He did it! Son1, 15, made the summit of Kilimanjaro!

Tania writes…

Luca Kili

Son1, Luca, made it to the summit with other team members

For those of you who have been interested in Aspie Son1’s expedition to Africa, a quick update.

He made it to the summit of Kilimanjaro! He wasn’t alone, of course. Luca was one of seven boys and three team leaders in their group to make the very summit, Uhuru Peak, Africa’s highest point on 23rd July 2013.

I had heard the numbers already from the wonderful Suzi at school, but did not know if Luca was among the ones who had made it to the very top as, despite strength and training, there are many factors that can intervene.

Congratulations to Luca and to all the boys who made the ascent, in both teams, shepherded by teachers, Sherpas and the action men from World Challenge, whether they managed the final push or not. Let’s not forget, they are all at a specialist school, although those still with physical difficulties would, of course, not have chosen to make the trip. And, they are all aged 15-17.

They have already laid a classroom floor and dug drainage trenches at their twin school, got to know the children, played football with them and cooked for them. They are now on safari before returning home next week.

I dreamed on Thursday night I was with my boy and he told me then he had made it to the top. It was such a vivid dream that I knew it must be true. But real-life confirmation came from Will Scrace’s mum, Collette, and made me burst into tears with relief – many thanks to Collette.

Thanks to everyone who has commented with kind words here and on Facebook – it’s really appreciated and will be something I can show Luca when he returns. If you’d like to leave a comment, that would be brilliant – they’ve all worked so hard.

Happy weekend!

Expedition Roll Call: (Added to when and if permission given)

Team 1: Luca Tirraoro, Will Scrace, Chad White

Led by: Richard from World Challenge, Mick Johnson from MHS

Team 2:

Led by:    

Kili teams

The teams before departure

 

 

Kilimanjaro Update – no casualties so far!

Tania writes…

A quick update on the 17 boys, all with some form of special needs, including my eldest, who’ve headed off from More House School in Frensham to climb Kilimanjaro and build facilities at their twin Shia School in Tanzania.

They’ve all arrived safely, are haggling and buying their own food and cooking for themselves, doing acclimatisation treks to prepare for the climb and even practising some Swahili. No casualties reported so far, though I am still worried that five pairs of pants for a month just isn’t going to cut it.

Below is from the front page of this week’s Surrey and Hants News by journalist Henry Ascoli who asked if he could focus more closely on Luca so that the readers would understand more about what a challenge it is for these boys in particular.

Fingers crossed they stay safe and I’ll let you know how they get on.

For me however, the challenge will be to get his younger brother into school for the rest of the week before Founder’s Day on Saturday, a morning that is always a test of endurance, high emotion and anticipation seeing which parents have deepest pockets to bid on the yearly auction (Hint: it won’t be us).

It’ll be hot, so I advise any new parent at our school to have fans, water and tissues (for joyful tears) at the ready, as the boys (all 400+ of them aged 7 to 18, except for those below) collect their end of year certificates and we laugh as Mr Yeoman pokes cruel, yet caring, fun of the sports teachers once again.

Kili

Asperger’s, anxiety, Angels and an African adventure

Tania writes:

Eighteen months ago, Asperger’s Son1 signed up for the trip of a lifetime.

His special(ist) school had joined up with World Challenge to organise a month-long expedition to Tanzania in Southern Africa. Participants would carry out project work in their twin school, Shia school, go on safari but most importantly, climb to the summit of Kilimanjaro.

Kilimanjaro

Destination Kilimanjaro

The school, More House, in Frensham, educates boys from 6-18 who have a variety of learning difficulties. They are bright boys, but may have dyslexia, Asperger’s, dyscalculia, dyspraxia and other similar disabilities and have a different learning style to that in mainstream. The school has a growing Learning Development Centre with an expert OT department.

So, a trip up a 5,895 meter mountain, the highest in Africa, is not going to appeal to every year 10-12 student. Especially the part where they had to raise the £4k plus cost themselves.

But Son1, whose difficulties are social and communication rather than physical (apart from a lifelong tendency to fall over nothing and break stuff just by looking at it) was up for it. He took part in the training and the fundraising and learned valuable skills along the way.

brotherly love

A brotherly farewell

And it hasn’t been only him who has had to learn skills – I have tried (and often failed) at not transferring my own anxiety to him. Anxiety is one of his major difficulties but he has learned to hide it to fit in and so it comes out in other ways, often aimed at us. We have learned to understand this and to breathe deeply and not shout back.

And so, today, 18 months later, the day of departure has arrived.

Top Dad, a former Royal Marine Reserve, has had endless fun “helping” (okay doing) the kit prep. He confessed that for weeks he’s thought it was him going up the mountain and is now devastated to realise he won’t be going himself.

Amber good luck Angel

Amber good luck Angel

So, checklist: Good luck amber angel and laminated angel prayer from (loopy) mum? Check. Immunisations? Check. Epipens for allergies? Check. Passport, visas, paperwork, four season sleeping bag (it’s freezing at the top), walking poles? Check, check, checkety check check.

Me with Son1

Tania with Son1

Tension has been high for the last 24 hours with Son1 answering every parental enquiry with a snappy, tetchy response. Anxiety hovered uneasily over Tirraoro Towers.

He said farewell to Son2, who is at home again, having decided school activity week is boring and not for him, thank you. He is an elegant school refuser. No shouting, no tears, just a polite decline.

kitcheck

Last minute adjustments from Top Dad

Anxiety joined us in the car on the way to school. I got a half hug when we got there, Top Dad was refused one. And then he was gone.

Will I see my amber angel again? Will we see Son1 again? Stay tuned. For those of you who have a spiritual side, here is my Angel prayer for my precious boy.

I  call on you, Archangel Metatron
And as many angels as needed
To protect my son, Luca on his travels
To surround him with protective angelic arms
And keep him from harm
And return him to me safe, healthy and happy
Guide him to get the most from his journey
And to gain in wisdom, compassion and spirituality
Help him to think ahead before he acts
And to keep going when he wants to give up
But most of all to enjoy his time
And know that we are all thinking of him
Thank you.

A spin around The Autism Show

Last Saturday, Debs and I visited The Autism Show at London’s Excel. Poor Debs fell over the dog a couple of days earlier and has her wrist in a splint so my long-suffering husband, Marco, came along as chief wheelchair-pusher and photographer, so thank you to him for putting up with my constant requests to go, stop, get closer, further away and turn left and left (I can’t remember right).

It was great to put faces to names and we excitedly foisted lots of our brand new SNJ pens onto people whether they wanted one or not.

We had an interesting chat with Mark Hayes from Autism Eye which is a great publication – free copies were available at the show. The magazine is also available as a digital download as well.

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Tania, Anna Kennedy, Debs

It was a whistlestop tour as I had to dash back to watch Son1 play bass in the school Jazz Band at a local Fayre  (they were splendiferous, if you like jazz take a peek at this. You can’t really see Son1, he’s the blond kid right at the back). Because of this we didn’t get time to see the Autism’s Got Talent show, but we did meet and have a chat with its founder, the tireless Anna Kennedy. Among her many achievements, Anna has started her own autism school, published a dance DVD for people with autism and hosted many, many events to improve the lives of young people with ASD, as well as having her own special needs children.

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Peter from SEN Mag, Tania & Debs

I was also delighted to meet in person, Peter Sutcliffe, the Editor of SEN Magazine. I have written for SEN Magazine in the past and subscribe myself – it’s a great source of information and ideas!

The award winning team from SEN Assist were also there. They make educational software for children with SEN and Adele, the company’s founder also works at Freemantles Special School, so she has plenty of young people to test her products on!

There were lots of stands with interesting resources, specialist schools, sensory equipment, legal services, and even products made by young people with autism from LVS Oxford. They teach their students real skills they can use in adult life, which of course, brings with it increased confidence and self-esteem. I bought some of their lavender sachets, my favourite scent (very old fashioned, I know!) Son2 decided when we got home that as he is a fan of lavender as well, I must have bought them for him. I have not seen them since but his room is smelling suspiciously fragrant.

IPSEA were on hand to give free advice in private cubicles and there was a big presence of course from the NAS and Ambitious About Autism

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Evelyn Hope Ashford & Debs

One great resource we will be featuring in more depth soon is Advocacy Service, Education Equality founded by Evelyn Hope Ashford. It is a low-cost advocacy SEN service and their advocates can also accompany you to meetings, tribunals and so on. Check out their website for more information.

We met so many amazing people in such a short amount of time! I really think the world of special needs is blessed to have so many energetic, dedicated and just bloody amazing people working to help children with SEN/D. Many, if not most of them are in the sector because of their own direct experience as parents of children with disabilities.

Finally, I end the post with an apology. I was due to co-present with Debs at the Wordswell Towards a Positive Future conference this Thursday. Unfortunately, I have realised after the weekend’s activities of Autism Show, Fayre and supermarket (how very dare I!) left me too exhausted to move on Monday, that it’s just not possible for me to manage the demands of travel and a day long conference. EDS and PoTS strike again!

However, Debs will be holding the SNJ fort and she has a brilliant presentation about parental co-production. I understand there are just a few places left, so if you are near London or can travel, tickets are just £30 for parents including lunch – and the chance to meet Debs of course and grab an SNJ pen – who could resist?

Other presentations will be from IPSEA’s Jane McConnell and Child Psychologist Charlie Mead, both of whom I am very sad to be missing. I am a great admirer of Jane and Charlie is one of my heroes for his brilliant work with vulnerable children.

If you do go, let me know your feedback – it’s a great line-up and our Debs is a complete star; I’m so proud to have her with me on Special Needs Jungle. We have lots of exciting things lined up in the next few months. The TES logo top left is a clue!

Did you go to The Autism Show? What did you think?

No change please! ASD Son2 and the hair tong dilemma: Can you decide?

Tania writes:

Yesterday it was my birthday and I was very pleased to receive some wave-making hair tongs to bring a spot of variety to my poker-straight locks.

tania-bday13

The scene of the crime

I gave them a try that evening as we were going out for a family dinner to our favourite Italian (Il Colosseo in Farnborough in case you’re interested). I was pretty pleased with the results and went to show Asperger’s Son2 (almost 14) who was, as usual, ensconced in the Technolair.

He broke off from his laptop for a moment to have a look and I could tell by his face that it wouldn’t be good.

“You look like a Disney Princess,” he said. “I don’t like it.” He gave me a hard glare and turned back to his computer.

I was, actually, rather pleased with looking like a princess, especially given my advanced years – although there is always the danger of looking a bit mutton.

This reminded me of when I (obviously mistakenly) wore some purple crushed velvet leggings- something quite different and unusual for me. Son2 pointed at them and asked, “What is that fiasco? Take them off.”

When I told him I wasn’t going anywhere and no one would see me he replied that he would see me, because, of course, that was all that mattered. I have never worn them again.

Son2, like many children with ASD, finds change very difficult and for him, this is only getting worse as he gets older. It particularly includes anything different about me. As the central person in his life, he likes me to be the same at all times. He also doesn’t like me being away, which can make life difficult.

tania-bday13-2

Don’t mention the hair…

When we got to the restaurant, me still with the dreaded waves intact, I made the mistake of mentioning to my sister-in-law, within Son2’s hearing, that he was unhappy with my Disney Princess look. This, of course, reminded him of his unhappiness and that, coupled with the noise of the restaurant, was too much. He refused to speak or to order any main course or eat any birthday cake and sat plugged into his iPad for most of the rest of the evening.

It was only near the end of the evening, when he pulled up the familiar images on his iPad of his carefully-painted Warhammer figures that he began to relax and managed to have some after-dinner mints.

I could have kicked myself for mentioning the hair when we were at the restaurant. It’s a bit like the Fawlty Towers German/war scene: Don’t mention the hair. I mentioned it once and I think I got away with it.  I got away with it in the house, but alas, the second time meant the evening teetered on the edge of disaster.

I think it illustrates how easy it is to slip up when you’re walking on eggshells most of the time. Life is not normal, even though your kids have no visible sign of disability. I wasn’t thinking about the repercussions of careless talk.

When we got home, I tied my hair back but it wasn’t enough. This morning I went into him with freshly washed and back-to-normal straight hair. He opened his eyes, looked at it and sighed happily. Everything was as it should be.

So what do I do with the hair tongs? Do I keep using them in the hope he’ll just get used to them or pack them away in their box? Help me out and vote below!

Catch your kids being good with help from Maya Angelou

Tania writes:

“Catch them being good” is the oft-repeated advice to help encourage positive behaviour in children. And it’s good advice. But when your child has a behavioural disorder such as ADHD or Oppositional Defiance Disorder, it can be very hard to do.

For one, you are probably on your last nerve and your child seems to be determined to get on it. For another, you probably feel that you’ve tried all the ‘good advice’ and your child is resistant to all of it.

But, as the parent of two, now teenage, boys both of whom have Asperger Syndrome and one with ADHD and the other ADD, I would urge any parent in this position to keep trying with this particular piece of advice, even if you have to do it, at times, through gritted teeth.

Angelou quote 1It’s also difficult to remember, especially when you’re exhausted and the mere sight of the source of your angst, little Jane or Johnny, can make your stress levels soar. You’re constantly on the edge, waiting for the next crisis to blow-up. Parenting can feel like fire-fighting, with little time for fun.

Being a parent/carer of a child with special needs can be like being in a battle zone with other parents of ‘regular children’ sitting on the sidelines tut-tutting and always ready to tell you your tactics are all wrong.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”  Maya Angelou

The above quote by American writer, Dr Maya Angelou, is what ‘Catching them being good’ for children with behavioural issues is about. It’s not the words you use or the action you praise, it’s about the self-esteem you are building in your child by doing it.

These children may look like nothing bothers them but you would be very wrong to think that. Every harsh word, brush-off, dressing down and punishment is keenly felt as rejection and the constant message that they are bad, unwanted and not worth loving.

So how do you do it? How do you step outside your own heart-ache, despair and sense of parental failure to build up the self-esteem of the source of your stress?

Here are a few tips that worked for us. They may work for you, they may not, but watchfulness will give you clues as to what does work for your child. You have to build on this and not give up. Of course I am not a child psychologist, I’m a parent, like you, and so I am speaking from my own direct experience.

1. Make a list of your child’s difficult behaviours. This may include being super-fast to anger, screaming, hurting other siblings/children, being unable to sit still at the table, not responding when spoken to, refusing to wash or go to bed or walk safely outside etc. Making a list when you are sitting quietly and calmly can also help you begin to identify triggers for particular behaviours.

2. Now you have the list in your head, you know what to look out for. So, when your child has sat at the table for even five minutes, praise them. It’s tempting to ignore it while they’re being good in case mentioning it sets them off, but this is a long process and you will both learn as you go along. “It’s so nice to see you sitting in your seat, it makes me really enjoy being with you at dinner time.”

Angelou quote 2See, this is not just, “Well done for sitting still” which really means nothing. You are, instead identifying the positive behaviour and backing it up with a positive effect it has had.

Another scenario: If you have identified some potential triggers from your list and you realise such a situation is about to arise, don’t wait for it to happen and then react. Step in with your praise first.

Perhaps your child finds not being first in the queue really hard, or not winning on Sports Day overly distressing (both experienced by Son1). Just ahead of time, say to your child that you understand that they find not being first really tough to cope with and you will be very impressed if they can hold it together if the worst happens.

So here, you are validating their feelings so they know it’s okay to feel bad if something doesn’t go as they planned, but you are giving them another option for a reaction. Personally, in this situation, I would also offer a small reward.

If they don’t manage to hold it together, console them rather than reprimand them. I know that Son1 had no confidence that he could control this overwhelming need for being first, but by praising each small step and helping him see that he had done the best he could, helped him to eventually overcome it.

“I did then what I knew how to do. Now that I know better, I do better.” Maya Angelou

Don’t give them mountains to climb though, praise small positive behaviours and begin to build up confidence.

Will it work first time? Maybe, maybe not, but don’t give up. Because :

  1. Your child will begin to see that you understand what makes them tick and this will increase trust.
  2. You will begin to feel more in control because instead of throwing up your hands and wondering WHY s/he does this, you will know and be in a position to help.
  3. Eventually your child will begin to see that they have a choice over how they react to situations. This is a huge skill and something many adults don’t even know.

angelou quote 3“Nothing will work unless you do.” Maya Angelou

So, it’s not a quick fix, by any means. But my child was worth investing the effort in. From being the recipient of behaviour charts in reception, alienating other children and being, at times, uncontrollable, Son1, now 15, is in one month’s time joining a school World Challenge expedition to Tanzania to climb Kilimanjaro and  carry out project work.

I am immensely proud of him and the way he has been enabled to work out many of his difficulties with the help of his Dad, myself and his specialist school.

I hope this might help you with your child. Or maybe you have some tips of your own that you could share?

Echolocation (aka Dolphin Boy)

Deb writes..

Some of you may have read a report this week about the use of echolocation in blind children.  In the article, it states “New research from the University of Southampton has shown that blind and visually impaired people have the potential to use echolocation, similar to that used by bats and dolphins, to determine the location of an object.”

As you will know my youngest son is visually impaired and in April 2010, we worked with Daniel Kish from World Access for the Blind.  We had been introduced to Daniel via a lovely lady called Sarah from Common Sense (a parent led charity supporting and empowering parents of children with VI in the UK).  We had approached Sarah as we wanted J to be using a cane but here in Kent, the practice (at the time) was to introduce canes when a child was 7 or 8.  However, me being me, I had researched the use of canes for hours and chatted to other parents across the globe – thank goodness for Facebook – and I wanted J to have a cane much earlier.  Common Sense loaned us a cane and Sarah introduced us to Daniel Kish as he recommended using a longer cane than was current recommended here.  The general practice here is to provide a cane which measures from the floor to the user’s sternum whereas Daniel advocates using a cane which measures from the floor to the bridge of the user’s nose.

Jamie caneWe were very fortunate that Daniel would be in the UK shortly after we contacted him and we arranged for him to spend three days with us.  Daniel is best known for his work using echo-location and we had our first introduction to it when Daniel arrived.  I was amazed to watch this man (with no vision) walk confidently around our home and the local area.

We spent the first day in the local park, walking along a long path which led to a fountain.  Daniel explained how using the sound of the fountain as a target for J would help him walk independently – yes, I was the mum who always held his hand.  Along the path, there was a row of trees and then a large open space.  Daniel explained to J that using a small clicking noise would help him know when the trees were around him and when it was the open space.  I am sure we must have been a very entertaining sight in Kent that day, Daniel and J with their long canes and me with my eyes closed, making clicking noises as we walked along.    But do you know what?  It really works.

You can try it yourself – sit in a quiet room (probably best once the children are at school) and close your eyes.  Hold your hand in front of you at arms length and make a clicking noise; then move your hand closer to your face and repeat the clicking noise.  You will hear the difference.  When an object is closer, the sound is louder and deeper.  You can even do this using a wall in the house – close your eyes as you walk slowly (and carefully) towards a wall and click.  As the wall gets nearer, the sound gets louder.  Then walk towards an open door and hear the difference.

We spent the next two days with several of the practitioners involved in J’s life.  His mobility officer, his VI play therapist, his nursery staff and another mum of a child with VI came along too.  It was fascinating for me, as the wealth of knowledge in my house was just outstanding.  As a mum, it was like a Masterclass on all things VI.

Daniel spent time explaining to J how to differentiate size with the clicks.  This involved lining up several glasses, bottles etc and asking  J to tell us which was the largest, smallest, plastic etc.

jamie homeIt was three intensive days but three days that changed a lot of what we did.  J decided that clicking wasn’t for him so he uses his voice.  He is my son and like me, he likes to chat and if anyone has met me and thinks I talk a lot, they need to meet him and realise I am a rank amateur in comparison.  Due to the fact that he is still a child and less than 4′ high, his voice is a great navigation tool for him as objects are still very large around him.  Cars and garden fences are large in comparison to him so this works well for now.

We are now working on the clicking more, as we appreciate that as he gets older, the talking may have to reduce in quantity (or maybe we are just hoping).  We will spend time out as a family and often we all click just to encourage J to do the same.  We are so used to people staring at us as a family that we no longer have any worries about how we are perceived by others.

The local and national press covered the story and J became known as the Dolphin Boy.  Sarah from Common Sense had worked with Daniel and her son was known as Bat Boy.  The media coverage was quite fun to do ; it really helped to raise awareness and of course, I got to sit with Ben Shephard on the GMTV sofa.

You can see the BBC video here and World Access for the Blind have several links to other coverage on their site

Labels: Love or Loathe them?

Deb writes…

Are labels a help or hindrance?  Do you love them or loathe them?  Do they change the way you or your child are seen?  Do they change the way you or your child are treated?

What about the labels given to the parents?  Oh yes, we all know they happen.  I asked a group of friends what labels they had been given by family, friends and practitioners and if they thought they impacted on the way people interacted with them.  Some of their responses made me genuinely laugh out loud but some were just a touch too close to home.  So what labels are parents given – do you recognise yourself in any of these?

Labels c. SNJThe Bubble Wrap parent.  Also known as a Cotton Wool parent.  This parent is judged as being too protective, hindering their child’s development.  They are seen as not allowing their child to experience life or not allowing their child to take normal risks.

The Bolshy Demanding parent.  Also known as the Rottweiler parent.  This is the parent who is educated and knows what the standards for services should be.  This is the parents who refuses to take “no” as an answer; the parent who will stay up all night reading the Education Act or the Equality Act so they can challenge decisions made.  This is the parent that the good practitioners admire and the bad practitioners detest.

The Competitive parent.  Also known as Oh no, here they come parent.  This is the parent that other parents dread bumping into.  The one who wants to constantly tell you just how much harder it is for them than you.  The one who makes other parents walk away from support groups believing they don’t belong there as their child isn’t disabled enough.

The Coping parent.  Also known as the Brave parent.  This is the parent who, from all appearances, seems to be dealing with everything perfectly.  They just get on with it – or so it would seem.  This is the parent who never asks for help and rarely, if ever, complains officially.

The Helping parent.  Also known as the Hindering  or Controlling parent.  This is the parent who supposedly hinders their child’s development by helping them too much.  The parent who will do “things” for their child instead of allowing their child to learn to do it themselves.

The Neurotic parent.  Also known as the Over Anxious parent.  This is the parent who looks for problems that don’t exist.  The one who refuses to accept “they’ll do it when they are ready”, the parent who thinks their child is not developing at the expected rate.

The Unengaged parent.  Also known as the Hard to Reach parent.  This is the parent that doesn’t access services, doesn’t respond to surveys; the parent who doesn’t always show up for appointments.

SuperMumAnd let’s not forget everyone’s favourite – the Special parent.  Also known as the Super Hero parent.  This is the parent who  gets told   “I don’t know how you do it”, “I think you’re amazing”  “I wouldn’t be able to do what you do” and the ever popular “only special people get special children”.

So which label fits you?  If you are anything like me, then you will have heard most of these at one time or another.  Usually I am known as the bolshy, demanding rottweiler (and yes, I was actually called that) and the coping parent.  Oh, and of course, the “Special” parent.  Which means that when I find myself having a bad time and not coping, no one quite knows what to do with me.  I had been put into a lovely little box and I fitted in there nicely – how dare I come out of it!

Often, this is what happens with our children.  They are given a label and society/family/practitioners all have different expectations of what that label means.  For example, Autism can mean “rain man”, “no eye contact” or “just naughty” depending who you speak to (and how your child presents at that particular time) but as any parent will know, our children are individuals and have their own personalities.  They also have good and bad days – why should a label change that?

We often label practitioners.  Supportive, waste of time, self-interested, my life-line, pen-pusher and the list goes on.  How often though, have you had met a practitioner and thought they were fantastic, only for a friend to be shocked because their experience had been very different?  Does that mean practitioners are individuals, have their own personalities and have good and bad days too?

So, if this applies to our children and to practitioners, then obviously this means we too are individuals with our own personalities.

Why should a label change that?

A personal take on depression: Would you recognise it in your child?

Tania writes

It’s Depression Awareness Week, although with the state of the economy and the weather, it wouldn’t surprise me if most of the country was painfully aware of feeling a bit in the dumps.

Ah, see what I did there? Of course, there’s a difference to being a bit blue and being clinically depressed, and for parents of young adults, teenagers and even younger children, it is very important to know the difference.

For example, what is the difference between your child just having a bad day, or your teen often being irritable or secretive because that’s all part of hormones and growing up, and the onset of something more intractable that will require careful attention and treatment?

Granddad

Granddad

I was diagnosed with clinical depression at the age of 16, although I had always been an anxious child due to an often uncertain home-life. For me, I can trace the true onset of major depression back to the death of my beloved grandfather, who suffered an unexpected and fatal heart attack in front of me when I was just 12.

The adults were allowed to grieve; I was told to ‘put it behind me’, although how I was expected to have the skills to get over the shocking death of the only male constant in my life is beyond me. My, now late, mother, many years later, told me that, in retrospect, she regretted the way she had handled it, but in fairness, it was 1980, and things were different then.

That evening, I had to call the ambulance for my gran and explain what had happened. I was staying with them over February half-term, while my sister was at our Dad’s house.

The trauma of it still revisits me though, even now after adult therapy. It’s still raw, 33 years later. It makes you less able to cope with adversity in a healthy way. The detail is still etched on my mind. It changed me, irrevocably.

Today, I’m great in a crisis, but I pay for it afterwards – a delayed reaction. I’m ever-vigilant, the fight or flight response never far from the surface. It’s not an easy way to live.

Some Shocking Statistics*

  • 1 in 10 children and young people aged 5 – 16 suffer from a diagnosable mental health disorder – that is around three children in every class.
  • Between 1 in every 12 and 1 in 15 children and young people deliberately self-harm  and around 25,000 are admitted to hospital every year due to the severity of their injuries.
  • More than half of all adults with mental health problems were diagnosed in childhood. Less than half were treated appropriately at the time.

Depression can often be part of illness

Anxiety and depression are also features of Ehlers Danlos Syndrome, with which both Son2 and I have now been diagnosed, so I was predisposed, in any case.

Son2 hasn’t had any trauma, but with EDS and Asperger’s it was almost a dead-on cert that he would be affected. He has acute anxiety problems, but because of my experiences, I knew what to look for and he is receiving treatment. It won’t ‘fix’ him, but it may help give him coping skills.

Son1, who also has ASD, has anxiety issues too. On the face of it, he looks like he’s coping well with help from his specialist school, but I know it’s still there, waiting to trip him up and so parental vigilance is needed.

Luckily for both of them, their father is the ultimate laid-back Dad (or in their speak, “soft as a pillow”), so they have a great male role model and a close-knit family. Even that, I know, is not always enough.

This is the first time I’ve ever written about my own depression and it isn’t easy. I’ve been embarrassed, not wanting to show weakness. I can barely utter the words ‘mental illness’ in relation to myself. But just recently, since I’ve been ill, I’ve had to do a lot of reassessing. I expect I have felt the same way teenagers feel when they don’t want to admit they are depressed or that there is anything bothering them at all.

Just because your child or young person hasn’t suffered a huge trauma such as family break-up or bereavement does not mean they are not at risk of mental illness. Lack of confidence, being bullied, poor body image, difficulties at school can all be factors.

And that’s not even taking into account any special needs they may have such as Asperger’s, dyslexia or other learning problems that can affect self-esteem. Or they may just be genetically predisposed to it, especially if you or their other parent are affected.

young minds logoAs a parent, you need to know what you’re looking for and Young Minds, the mental health charity for young people, have lots of resources on their site for parents and for young people themselves. Take a look, even if you don’t think your child has a problem. Parents are often the last to know so knowledge is power. There is also a section for teachers on recognising and helping young people with mental health problems.

The usual NHS route for young people with mental health problems is via your GP and then to CAMHS, the Child and Adolescent Mental Health Service, but as you can see from the comments in this post that is a very variable service, depending on where you live. I really would advise checking out the Young Minds site as well.

I shared just some of my story to help raise awareness that depression can happen to anyone, at any age. But when it happens to a young person, without a vigilant adult, their problems can spiral out of control catastrophically. Self-harm is becoming more common, anorexia and other eating disorders are almost certain to include depression and far too many families are torn apart by the loss of a young person to suicide.

Teenagers are notoriously poor communicators; they are working on growing up and away, if they are able. Be watchful, be informed, keep talking. If you can’t do this without arguments, try this book, the 1-2-3 Magic for surviving your teenagers. It will show you how to begin to see them as young adults in their own right, and no longer just your little ones.

If you’d like to share your experiences, resources, tips or knowledge I’d love to hear them!

* Source: Young Minds

My son and his literal world

Debs writes….

My eldest son, K lives in a very literal world and we spend half of our day trying to watch what we say, and the other half paying for the fact that we forgot.  “Watching what we say” – there you go, that phrase would have K staring at our faces to “watch” what we are saying.

Inititally, this caused us heartache, for example when we saw him closing a door and shouted “watch your fingers” and he did.  He watched them as he closed the door on them.  We hadn’t said “move your hand away from the door”.  However, it has also caused us some huge entertainment.

For a long time, K believed my name was “Hiya”.  When people visited us, the first thing many of them said as they walked through the door was “Hiya” and K truly thought this was my name.  When I intitally suspected this, I said to my parents “I’m sure he thinks my name is hiya” so that evening, at dinner, my dad said “Hi K” and K responded “Hi Grandad”, then my mum said “Hi K” and he responded “Hi Grandma” and then I said “Hi K” and he responded “Hi Hiya”.  Mummy Hiya was confirmed.  This did amuse us, especially when I left him at nursery and he would respond “Bye Hiya” or “See you Hiya”.  Yes, I know that this could be interpreted as me laughing at my son but nothing could be further from the truth.  We have to get through this jungle with some sanity intact so for us, a sense of humour is essential.

As he got older, K realised that my name was Debs and he also understood that I was his mummy.  However, he chose to call me Debs.  He would return from school and say “Hiya Debs, where’s Chris” and I would reply “Daddy is at work”.  This went on for some time and still does, however, when we asked him why he called me Debs and not Mummy, he gave me a very confused look and replied “But you don’t call me Son, you call me K”.  So yes, why should he call me Mummy – which is in fact my relationship to him – when I call him K and not Son.

Sometimes his logic just stumps me for a response.  On one occasion, K had been settled in bed, however, when I finished making a brew and walking into the sitting room, he was sat in there.  I asked “Why are you not in bed” and his response was “because I am sat down here”

shameOf course, living in such a black and white world, with little understanding of social rules can cause some issues.  Usually mortification

We had one occasion when I was trying to plug him into a booster seat with one other child (in a booster seat) and a non-petite lady in there too – not an easy task.  So how mortified was I when I asked K to move towards me and he responded  “it’s not me, it’s her – she’s fat”.  Now as a non-skinny lady myself I was horrified for this poor lady and I told him very firmly that we don’t use this word, it’s not a nice word and he was plugged in and off they went.

That evening, I asked him how the day was and he replied it was okay, I asked about the journey and he said he was “squished” in the car because the lady was fat.  I explained again, this was a word that makes people feel sad inside and not a nice word to use.  The next morning, we walked out to the car and I suggested that it may be nice to apologise for using that word and he was happy to do this.

We got to the car, he sat down and as I plugged him in, he offered an apology.  “I am sorry I said you were fat yesterday, Debs has told me that it is not a nice word and it can make you sad inside which is not nice”.  The lady accepted the apology, I smiled with pride and then……..

“Debs, it’s not my fault I am squished in here.  It’s her, she is overweight and needs to go on a diet”  The driver at this point choked, I was looking for a hole to crawl into and K said “is that ok, Debs – I didn’t use the word fat so no one feels sad.”  Want to bet?

So yes, the literal world can be amusing, heartbreaking, mortifying and a real challenge but we try hard to keep smiling.   I would love to hear your experiences, maybe we can all help each other.  We now have a rule with K that he doesn’t comment on people’s height, size, colour or clothes unless they ask him to.    What rules or tips do you have?

Autism Acceptance? It’s so much more than that…

Tania writes:

It’s Autism Awareness/Acceptance Day, Month, whatever… lots will be written today about what autism is and what it isn’t.

No one expects to have a child with an ASD/ASC, whatever they’re calling it this year. Once you have the diagnosis, it’s like entering a parallel universe of impenetrable mazes with multiple dead-ends, where people speak in strange acronyms and expect you to understand what they’re talking about.

You can get lost in the battle to secure services, support, suitable education and the funding thereof. As your child or children (in my case) grow, you will encounter different challenges such as transition to adulthood, training, independence.

If your child is five or six, you’ve probably not even thought this far ahead. This is just as well; it would be too much to cope with. We are now at this stage: my boys are 15 and 13.5 and both have different levels of need and what one may manage, the other may not.

superbabeOne thing we have learned – just when you think you’re doing okay, something comes along to trip you up and you have to take stock and look for new solutions. You are constantly operating at your maximum tolerance, so that when something comes along that you didn’t expect, it is easy to experience meltdown or even breakdown.

People on the outside often do not understand this and may judge you accordingly. This says more about them than you.

While working for better understanding, treatment and life chances for people with autism or any other condition is a necessary and constant crusade, for those families affected, it is much more personal. It can often be just as big a battle for self-acceptance and coming to terms with a diagnosis and that this is the way life now is.

For me, recent health issues have meant I have had to accept I am not superwoman and reassess my goals. After five years of not claiming school transport, I have now had to admit my limits and ask for a taxi for them. It’s a compromise; I won’t ask for both ways because  they need the security of knowing if they’ve had a bad day, it’s over as soon as they’re in the car with me.

Universal Truths

But whatever your personal circumstances, I believe there are universal truths, and not, for that matter, just for parents of children with autism, but for any parent of a child with a disability, medical condition or rare disease (named or not), so you can just substitute the word ‘autism’ for any of those.

We’ve been doing this a while now, so I feel pretty qualified to offer the following, based on my own experiences:

1. If you have never cared for a child with autism, you don’t know what it is like. Even if the parent seems fine and happy, you should never make assumptions of what it’s like being in their shoes.

2. It’s different for every family affected. For example, if you have a child with high functioning Asperger’s, it is likely to be a very different experience to life as the parent of a non-verbal, severely autistic child. This is even more true if your child has medical needs as well.

3. It’s hard work – mentally and physically, wherever they are on the spectrum. Some people cope with certain aspects better than others. Sometimes you will feel like you’ve been run over by a steamroller but you will eventually peel yourself off the floor like a flattened cartoon character, because you have to.

4. Stress and worry are likely to be your constant companions; maybe even depression. What do you expect? You’re only human. It’s okay to admit it and to seek help for yourself. In fact, it’s preferable than pretending everything is fine.

5. You will be judged. There will always be people who think they can parent your child better than you can. You will learn not to care.

6. You are likely to end up with more friends who have children with special needs than those who don’t.

7. You will feel like running away. Or worse. You almost certainly won’t end up doing either.

8. You will learn to smile when people tell you they don’t know how you cope, or that you do fantastically well. Inside you may well think, “If you only knew…” You may actually want to punch them, but it’s probably better to resist.

9. You will grieve at some level for the life as a parent you had envisaged before you actually were a parent. Then you will get over it and get on it with. After all, what’s the alternative? But at odd times, this grief will revisit you. This is normal.

10. You will read studies that tell you autism is caused by any number of things, most of which you will feel, at some point, are your fault. None of them are. Autism probably has lots of different triggers which result in similar symptoms. Read the studies, or don’t, they won’t change your reality.

All that matters is that you try to be the best you that you can on any given day. Some days will be good, some days (sometimes whole weeks) are better forgotten. Others can accept that or not; they can choose to be your friend and love you without judgement or not. You have no control over that.

Accepting yourself for being flawed and imperfect can be much harder than accepting your child’s diagnosis.

It’s what makes us human.

Rare Disease Day: My son has Retinopathy of Prematurity

facebook-profileToday, 28th February is Rare Disease Day. It’s an awareness raising day for the millions of people around the world who are affected by rare conditions. Most suffer from lack of investment in research and drug development because there simply aren’t enough people diagnosed to make it a profitable enterprise for pharmaceutical companies.

Today on Special Needs Jungle is the third of our series of posts about rare diseases as our contribution to raising awareness. You can find links to the others at the end of Deb’s moving article about her beautiful son J, who has a rare eye condition that means he cannot see.

Debs writes:

rosie and jamie 005

My twins were born three months early.  After an emergency arrival into the world, R, my daughter “just got on with it” (as the NICU nurse described it).  However, her brother, J, was not so keen to be here early (he still doesn’t like early starts) and needed more intervention.
As a result of their prematurity, they both developed Retinopathy of Prematurity (ROP).  This is the abnormal development of blood vessels in the retina of the eye and the condition has five stages.  My daughter was diagnosed with borderline stage 1/2.  My son was initially diagnosed with Stage 3 but this quickly developed to  stage 5, which in layman’s terms means his retinas have detached.  He has no vision or light perception.

ROP develops in 16% of all premature births (with this rising to 65% in those with a birth weight < 1250g) however, severe ROP (stage 4 or 5) is very uncommon – less than 500 children per year.

I still vividly remember the night we received the diagnosis.  We were told this was a routine eye examination for premature births (with very little other detail) but as soon as the ophthalmologist was examining my son, I knew by his reaction that something wasn’t quite right.  To check for this condition, the baby has to have their eyes pinned open and I remember just listening to my son cry.

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Ten things I wish, with hindsight, I had known

Debs writes….

As we go through the Special Needs Jungle, we pick up tips, we gain confidence and we often think “I wish I’d known …….. at the beginning”

I wanted to share with you the ten things I wish I had known (or had the confidence to believe) when we entered the Jungle.

  1. When you sit in the room with the practitioners, you are an expert too. You may not be an expert in your child’s diagnosis (yet); you may not be an expert in what services are available for your child but you are an expert in your child. You know your child better than any practitioner. So at your next appointment think “I know my child and I bring this expertise to the meeting.”
  2. 1401629_dancing_girlsIt’s okay to take a friend to an appointment. Not just for support but also to take notes. Someone who, after the meeting, can help you to remember exactly what was said. I have walked out of so many appointments and thought “what was it he said about…….”. They can also be the person who can take your child out of the room when you want to have a discussion you don’t necessarily want your child to hear. Taking a friend is not a sign of weakness or even seen as confrontational, it’s just support when you really need it. Often our friends without children with SEN wonder what they can do to help us – let them help.
  3. It’s okay to feel sorry for yourself sometimes. I really tried to bottle those feelings up and pretend that I was okay, that I was coping when inside I wanted to shout “why me, what did I do”. I would sometimes avoid my friends who didn’t have children with a diagnosis because I wanted to ask “what did you do differently, why do you not have to deal with the same things I deal with”and then I felt guilty for thinking this. But guess what? It’s normal. So many parents of children with SEN go through this, especially at the beginning when you are learning how difficult this system is, this system you are involuntarily dealing with. Don’t bottle it up. When I have a day like this (and I still occasionally do), I stay indoors, I turn off my phone and I cry. Then I get myself back up off the floor and I have stopped feeling guilty for being human.
  4. 1321733_broken_heartSometimes it is going to hurt. When you get a diagnosis, even if it is a diagnosis you have been fighting for because you know the label may help to get the support, it can still hurt. Just because you are expecting it, don’t think it will hurt less. It may not. When I got the diagnosis of hydrocephalus, it was unexpected and it hurt. However, when we went for the diagnosis of ASD, I was expecting it, I knew it was coming and I knew it would help but it still didn’t hurt less when it was confirmed. I can still remember sitting in the car on the return journey and feeling like my world had been turned upside down. I can still remember people saying “what are you upset about, you knew they were going to say this” but do you know what, even though I find this hard to admit, I wanted to be wrong. I wanted them to laugh at me and say “you silly neurotic woman, why would you think he was autistic”. But they didn’t and it really hurt. Then, years after the diagnosis, you will have reality checks and they may hurt. This morning I suddenly had this realisation that I won’t be able to just scribble a note for my son when he’s older. If I have to nip to the shop and maybe he’s in bed, I won’t be able to stick a post-it note to the door saying “nipped to the shop, back in 5”. Yes, I will be able to braille him a note but where do I leave it? I know we will come up with a solution but just this morning, I had a reality check and it hurt.
  5. It is stressful. When you are pregnant with your first child, everyone with children will take great delight in telling you how stressful it is, how this child will change your lives and you may think you understand what they mean – until your child arrives. It’s the same with the system, I can tell you it will be stressful but until you are going through it, it is difficult to understand exactly what I mean. At Kent PEPs last year, we asked parents how they dealt with stress and also, more importantly, how they knew they were stressed. We produced a leaflet for parents with advice and tips from parents in the same position. It’s our most popular download.
  6. Don’t get to crisis point before asking for help. In Kent, we have to go via our Disabled Children’s team to get direct payments and so many parents, who would benefit immensely from this service, refuse to access it because it means involving a social worker. We asked parents recently what would put them off and the main response was “fear of admitting you were finding it hard to cope”. Please don’t wait until you can’t cope before you ask for help. Admitting you are finding it hard is a sign of strength, not weakness.
  7. c&fbillimageI wish I had known more about the law or that there were statutory bodies and charities set up to help parents of children with SEN law. Several websites (including this one) and charities are there to give you advice on SEN law and your local Parent Partnership Service is there to give advice on SEN educational law. There is a huge list of Acts, Conventions and guidance out there to help protect our children but often, you only find out about them when you have already been through months of stress. Even if you do not have the time or ability to read and understand The Equality Act or the new Children and Families Bill, there are others that do. Try to think ahead and find out where you can get help before you need it. .
  8. You will get turned down. I remember the first time I was turned down after applying for support for my eldest son. I had presumed that common sense would prevail and he would get help because he needed it. When I was turned down, I was really shocked. I took it personally, I thought perhaps I hadn’t made it clear, perhaps I had offended someone, perhaps it was me they were saying no to. Having three children with SEN, I soon realised that the system can often be a case of “apply, get turned down, appeal”. I eventually stuck an A4 sheet with these words written in red, yellow and green on my fridge as a reminder that this was not my error, it was down to the system.
  9. You will meet some amazing people. I have met people who inspire me, who motivate me to carry on and people who I feel privileged to have in my life. Most of these people live this, they don’t do it for a living (but there are exceptions). A lot of the parents I know who are involved with their local parent carer forums are amazing to me. Some of these parents have found their way of dealing with the stress, they get involved and try to influence change. Not all parents are ready for this or want to be involved but I am so pleased to be part of the group.
  10. super_hero_flyingI am not Superwoman. If I had to choose one thing I had known at the beginning, this would be it. The hours I spent trying to achieve the un-achievable! Superwoman is a fictional character who does not have children – and definitely not children with SEN. Trying to be everything for everyone all the time is not possible. Spending your days thinking “I should have”, “If only I had”, “I wish” is never going to lead to a good place. Neither does comparing yourself to another parent who is perhaps involved with so many different things that they make you feel like a failure. People deal with things differently, some choose to get involved with forums, some choose to set up support groups, some want to go along to a support group and others just want to avoid support groups like the plague. Whatever works for you is the right thing – for you. You can always get involved or step down from involvement at a later date. You have to take time for you, you have to choose your battles and you have to remember there are only 24 hours in a day. Focus on what you have achieved, not just the things you believe you have failed in. Sometimes, getting through the day without breaking down is an achievement. Celebrate it. Getting dressed can be an achievement, as can making it to an appointment on time. Celebrate the achievements, no matter how small you think they may seem to others. You will know what it took for you to achieve it, so say “well done” and feel good about yourself.

What do you wish you had known? These are my ten things, they may not be yours. More importantly, what achievement are you celebrating today?

Special Needs Jungle named in The Times “Top 50 Sites To Make You Smarter”

Wowzer!

Special Needs Jungle has been named in the The Times (yes the UK national newspaper) as one of its “Top 50 Websites To Make You Smarter”.

Special Needs Jungle

How amazing is that?

Thanks to Justine Roberts, co-founder of MumsNet, who gave SNJ the ‘thumbs up’ in the ‘parents and teachers’ section of the Top 50.

It means a lot, especially as I’ve recently been diagnosed with  heart rhythm condition, Inappropriate Sinus Tachycardia, which makes day to day life much more difficult as I try to keep up with all my commitments.

This is partly why I’m so pleased that Debs Aspland has come on board to contribute all her knowledge and experience of SEN and coaching and help me take Special Needs Jungle to a new level.

SNJ is, at the moment, voluntary, although if I carry a post about a commercial product, I do ask for a small donation to my boys’ special school.

I’d like to move it to a self-hosted WordPress, but I don’t have the time to make sure it’s done properly, so any advice from savvy readers would be gratefully received!

So, thanks again to The Times and Justine. You’ve made my day!

Exciting news from Special Needs Jungle-bringing in a fresh perspective for 2013!

I have some exciting news for Special Needs Jungle for 2013!

In 2012, the site really took off and now covers a much wider range of issues about special needs and disabilities, thanks to the many fantastic guest posts that people have kindly contributed. I am aware that my boys are growing older and have a certain type of special need and I have been thinking about how to expand the parental perspective  for the site.

Last year, I met the most amazing woman, a fellow transplated Northerner with an incredible knowledge of SEN/D who also has three children of her own with a range of disabilities. Her name is Debs Aspland and she is also the chair of Kent PEPS parent carer forum. Her energy and dedication amaze me.

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Ordering at Starbucks, Asperger’s style

Yesterday, I took the boys shopping to Basingstoke. As I’m not currently able to walk far, I sat in Starbucks armed with my iPad to do some work, while they toured Festival Place, pockets filled with Christmas cash.

Now, I’m not good at Starbucks. I don’t even like coffee that much and would rather not consume my daily calorie allowance in one latte topped with whipped cream. Then, what size do you want? I can’t even remember what the sizes are called, never mind how big they are. By the time I get to the front of the queue, I’m as glazed as a doughnut, so I always go for tea, Earl Grey, errm, medium? Ish? I know, it’s very “Mrs Brady, Old Lady” of me.

cupI hadn’t been there too long before Son2 joined me with his purchases from Lush. He is a big Starbucks fan so I gave him some cash for a drink and he joined the inevitable, slow-moving queue.

I had a proud moment, marvelling at how Asperger’s Son2, 13, was now able to queue and ask for what he wanted by himself as well as meander round the shopping centre (that he knows well) without me.

I watched from my seat as he made his choice, paid and wandered over to end to await his order. Then Son1 appeared, exchanged a few words with his brother and came over to me, looking incredulous.

“He said the woman asked what his name was to put on the cup and he told her it was David!

David is not Son2’s name. Not even one of them. Not even close. Son2 approached with his drink and I asked him why he’d said that it was.

He shrugged. “I panicked!” he said. I understood immediately, for, dear reader, the apple doesn’t fall far from the tree.

We headed back to the car but it soon became apparent that Son2 was not enjoying his choice of beverage, a Vanilla Spice Latte. He passed it to Son1 who asked him why he’d chosen it.

Son2 grinned. “I panicked…”

Doing your best is all you can do

Today I’m feeling a little sad. Son2 is off school again with joint pains in his legs. We’ve just been for a blood test and he is awaiting an appointment later this month with a specialist in London. I’m pretty sure I know what the diagnosis will be but it hurts to see my 13 year old son in so much pain that he is hobbling around.

Do your best.. even when blowing bubbles

I spoke to our school nurse and, because of his school’s hilly campus, it is likely that we will have to draw up a care plan for him so that, if the pain persists, we find a way for him to attend lessons with as little discomfort as possible. Once a diagnosis is made, I will talk more about the condition as, although classed as a rare disease, it may be much more common than thought.

This has made me realise even more how futile it is to have expectations, high or otherwise, when you have children with special needs. Whenever things are going well and you rest on your laurels, you might think it’s ok to concentrate on other aspects of your life, such as work. This is always a mistake. So it is necessary to concentrate on everything at the same time – to keep your eye on all the balls in the air for whatever you have to do.

This is, inevitably, stressful and, as some have recently discovered, can make you short-tempered with those who do not try as hard as they might. It also means that, occasionally, one of those balls is dropped. For example, I have been so focused on my work and the children that sometimes, my poor husband doesn’t get the attention he deserves when he has supported my new, busier schedule and cheered me on.

I expect a lot from myself, however, and set myself high standards. In practice, this inevitably means I often disappoint myself when I am forced to let someone down. Today, for example, I was supposed to be going to Woking to attend an SEN meeting. However, Son2’s urgent blood test, meant I had to let someone down in order to do something more important. Unavoidable, but it still didn’t make me feel good. Happily, we managed to have the meeting later via a conference call. Then I was supposed to be meeting a new friend when I got a call to say Son1 also wasn’t well and could I collect him at lunchtime? Meeting cancelled.

I have also, up till now, expected a lot from people around me  in terms of people doing their best. I don’t care what anyone’s abilities are, I just care that they try their best, whatever their best is at that moment in time.

Is this unfair? Actually I don’t think so. No one can give their top performance all the time – our energy varies from day to day. But note, I said “their best whatever their best is at that moment in time”. It is something that I really want to impress upon my boys, despite their undoubted and, in Son2’s case, increasing, difficulties.

No one can expect more from you than your best, whatever that may be, but you should give your best at all times even if it isn’t as good as it was yesterday. I mean who wants to be a slacker? I think if you go to your deathbed knowing that you tried your hardest to achieve your goals (whatever they are) and make life better for other people (if you are able to) then you can die happy.

For some this may be achieving great things, for others, the gains may be more modest, but it’s not the size of the achievement that matters, it’s the effort. For people with a learning or physical disability, what may look on the face of it to be a small gain, may indeed have actually been a colossal effort worthy of huge praise.

I am also lucky to be involved with people who do more than is expected, who go the extra mile to do a great job and those who frequently think of others before themselves. These people inspire me to keep on keeping on even when, as today, I want to bury my head under the covers, go to sleep and wake up to find myself living in a fringe universe where the good live long and happy lives, where no one is hungry and where kids are pain-free and universally well-treated.

Maybe in another lifetime.

SNJ on MumsNet – The Paralympic legacy debate

So, here I am, back from Sweden after what was an amazing meeting for people with limb disabilities from 12 different countries. It’s not easy to travel with a disability and especially with a wheelchair but this did not deter them from making their way to Malmo to take part. It was fantastic to get together so many people from far apart who face so many similar challenges. It was possible for them to discuss their own experiences and how they can work together to bring a strong, positive voice for the needs of the limb difference community

Just before I went, I was asked by MumsNet to submit a debate piece about the legacy of the Paralympics against the Equalities Minister, Maria Miller. This I was delighted to do and, this afternoon, it is published here http://www.mumsnet.com/bloggers/paralympics-legacy-debate.

Ms Miller’s piece is about the positive influence the games have had, whereas mine is a little darker. The games were great – inspirational, a great spectacle – but their legacy?

Well, you can read both points of view here and then click the debate link at the bottom to have your say.

 

What’s your experience of CAMHS?

Many of our children have to be referred to CAMHS – The Child and Adolescent Mental Health Service – to help manage their behavioural difficulties or perhaps if they are experiencing a difficult period of depression or anxiety.

After a very difficult Year 8, largely due to an issue with a particular teacher about whom the less said the better, we found ourselves in this position with Son2, who has Asperger Syndrome. He was referred by his paediatrician at the end of last year.

The paediatrician, it later transpired, in the battery of blood tests ordered, had not included a Vitamin D test and so missed that part of his issues stemmed from a severe Vitamin D deficiency. This was only picked up by our forward-thinking GP, when Son2’s legs began to cause him pain some weeks later.

So, we wait for the CAMHS appointment. And wait. And wait. Meantime, Son2 was finding it difficult to go to lessons and is on many occasions, unable to go to school at all, a stressful situation for the whole family.

Then eventually, an appointment arrives, SIX MONTHS after referral. My husband takes the day off and off we go. At the appointment is the paediatrician and a CAMHS psychologist who shall remain unnamed to save their blushes. Son2, predictably, refuses to speak to either of them.


We explain Son2’s issues, as the paediatrician yawns through the whole appointment, then takes a phone call. At an appointment we have waited six months for. I studiously ignore him. The psychologist agrees to prescribe a trial of a particular medication and says she will call the school to speak to his counsellor there before we get it filled. However, to the best of my knowledge, she does not and we are left with an unfilled prescription a week later, still waiting to hear back from her. I call and leave a message. No response. So, I decide to get the prescription filled although Son2 will only agree to take it after I take him back to our GP who explains to him the effect it will have on him and that he will soon start to feel better, something, presumably, the psychologist should have taken the time to do.

Within a couple of weeks, indeed Son2 is feeling better and even manages to go to the local shop by himself for the first time in a year. But there is still no word from the psychologist and we are coming to the end of the bottle. I call the GP who agrees to prescribe a further bottle, even though this is supposed to be a monitored trial.

Off we go on holiday, where Son2 has a couple of relapses but is generally much better. When we return, there is still nothing from the psychologist, so I call my GP again to ask who should be monitoring Son2 as we have heard nothing, nor have we received a follow up appointment. She checks her screen and has a recent letter scanned in that says Son2 had been referred to the wrong county sector of CAMHS and had been re-referred to a different local region. They had not bothered to cc us in because, of course, as the child and his parents, we are the least important people in this process, it would seem.

I am incensed. And as David Banner used to say just before he turned into the Incredible Hulk – don’t make me angry. You wouldn’t like me when I’m angry.

I call the new department to find out what is happening and, to avoid my call going ignored again, I  pass on to the lady who takes my details that I am also co-chair of the local parent-carer forum and a response would be appreciated, as I am extremely unhappy at this rather careless administration when they are dealing with a vulnerable child who has been prescribed some serious medication.

An hour later, a lady calls me, very concerned that I shouldn’t be complaining about them and I assure her that it’s not them at fault, but the other CAMHS section. We now have an appointment for 25th September. So, because of this mistake in referral Son2 will have had three months with no monitoring for a child who was only put on an initial trial of an SSRI.

It doesn’t bode well for the future for an integrated health, education and care plan if they can’t even figure out where you should be referred. And at the heart is an autistic boy who has been suffering since the end of last year. Parents should not have to chase for information, it’s very distressing, because it makes you feel very alone and insignificant.

Because of my position, I happen to know the head of CAMHS in our county (a very sincere person, in my experience) and I emailed her to tell her about the whole sorry tale. As I expected, she was horrified and apologised, assuring me she would ensure Son2 received the right treatment and that she would also take steps to make sure this did not happen to anyone else.

However, I am not sure my experience of CAMHS, in any county, is particularly unusual, or even especially bad, and I would be interested in hearing your story too.

Parent-carer forums – why not get involved?

As you know, I’m co-chair of Surrey’s parent-carer forum, Family Voice Surrey. I joined at the beginning of the year and realised just how much there was about SEND provision that I didn’t know. Although I was very well informed about statementing, there is so much more that involved complex needs provision, transition planning, vulnerable children and the morass of different funding streams is a jungle in itself.

My co-chair at FVS is Angela Kelly, herself the mother of two sons, both with special needs. Ang and I get on very well and have a very productive relationship. In fact, we’ve just been working hard to launch the new Family Voice Surrey website before we head off on our respective summer hols.

Being involved with a parent-carer forum is something we both feel strongly about as a way of helping other parents in a similar position to find the help they need and to be involved ourselves in shaping local special needs services for families who need them. If you feel like you can offer something, why not get in touch with your local forum? You can find a list here

Recently, we’ve both had to speak at a number of events and drafted a joint speech, which we then personalise with our own experience.  Angela spoke at a Voluntary and Community Services event in Surrey and I thought what she said about her own experience was really powerful and explained why parents who are already under immense pressure looking after their own children with special needs, feel compelled to give up their time to get involved and help others. I’m posting an excerpt here:

***

I have been involved in the Surrey’s parent-carer forum for almost 18 months and been involved in the Pathfinder project since November 2011.  I became involved as a result of my own frustrating experiences of the current system. Endless hours on the telephone. Endless filling in forms, endlessly telling my child’s story over and over again.

Being heard but not listened to is one of the most frustrating feelings there is and for this to happen time and time again, when you yourself are exhausted and just about hanging on, well something had to change!

Parent-carer participation is at the very heart of the pathfinder project; it is mandatory. We are central to, and key partners in, the SE7 SEND pathfinder activity and this has been a learning process for all parties involved both parent and professional.  Far from being a lip-service ‘add-on’ or after-thought, our voices are the ones that should be heard the loudest over the noise of politics and officialdom. After all, it’s our children, that we love and worry about every day, who are the point of the whole exercise.

All parent-carers who are involved are a parent or a carer of a child or young person with SEN and or disabilities, so we have a wide range of experience between us of what it is like to live with and try to find the right educational, health and care solution for children with additional needs.  This is what makes parent participation vital, to make sure that any changes to the system actually DO improve support for children with SEN & disabilities which will, in turn, help their parents.

This gives us a unique perspective when it comes to our involvement in the pathfinder. Because of course, we are the ones still caring for our children’s needs, when the professionals have gone home for the day.We aim to bring an informed voice to the discussions for the direction of reforms for the various work streams. This involvement that has helped the professionals see the positive side and the potential benefits to parent-participation.

Two parents from the committee sit on each stream of work that is being tested.  These are, the Education, Health and Care plan, Early intervention / complex needs, personal budgets, the local offer, transition and vulnerable/looked after children who have no parents of their own to speak for them.

My overall experience of my involvement in the Pathfinder has been positive and I feel that as a parent-carer I am able to contribute to shaping the future for SEN and disabled children

Volunteering: The best way to spend your summer

We’re heading off for Italy this weekend and because both boys have special needs, we’ve always rented a villa with a pool and taken their Grandma and Nonno along to help out, so that we can all have a break without worrying about potential public meltdowns.

But imagine if your child has a serious physical illness or disease that makes it difficult to go anywhere without a high level of medical support? Pressure on families like these can be immense and no one needs a break as much as them.

Barretstown, based in Ireland, is a specially-designed camp that provides Therapeutic Recreation programmes for children with serious illnesses and their families. But to make it possible, the camp needs thousands of caring and energetic volunteers every year. My colleague, Rob Pleticha, whose day job is Online Communities Manager for RareConnect at EURORDIS, the European rare diseases organisation, is one of them. He volunteers every year to help children who are living with illness or rare diseases. A short time ago, he spent a week at Barretstown and he’s been kind enough to write for Special Needs Jungle about his experience and the camp.

***

You arrive the night before the training. It’s dark but the trees are bright green, the horses are so comfortable, they lay down in the pasture sleeping, and the cabins spread thorough out the grounds emit a warm glow. You sleep well in the Irish night as fresh air fills you.

You’ve come to Barretstown in Ballymore Eustache, Ireland to participate as a volunteer “cara” at an eight-day camp summer session. 120 kids from 7 countries will arrive in two days. They all share the common experience of living with a serious medical condition at a young age.

Barretstown is a member of the European Global Organisation of Serious Fun Children’s Network camps founded by Paul Newman. The five camps in the European network allow over 3,000 children from 26 countries to attend summer camp and have life changing experiences. The services are always free of charge to families.

(more…)

Finally: summer, special needs stories and a teenage birthday

Special Needs JungleAh, so school’s out for pretty much everyone from today..just in time for the summer sunshine to finally show itself.  Although my boys are enjoying the end of their second week of alternately slumping in front of screens or eating everything in the house, interspersed with a bit of warhammer painting or deafening me with electric guitar-playing (this is Son1 and he’s very good, thank goodness)

But today is a special day in our house – it’s the long-awaited dawn of Son2’s teenage years. Summer birthdays always seem the longest to come around and last night, having decided to no longer resist being 13, Son2 decided as it was inevitable, he might as well get really excited about it.

He’s now exploring his iPad (see image for his personal engraving on the back) and newly-boosted collection of Orks as he awaits the arrival of a few school pals for a party.. of some type.. to be decided when they get here. I just have to provide pizza, drinks and be scarce, which I  am more than happy to do.

One thing he won’t be doing is perusing my list of must-read stories from the week and this is a shame, because, if he was twenty years older, he’d enjoy them very much, I’m sure. So, happy holidays to you and Happy Birthday to my brand new teenager!

Inspired: Son2 meets Dr Temple Grandin.

Last night we had the privilege of going to see Dr Temple Grandin, the autistic woman famous for inventing humane animal handling systems. Dr Grandin is also a renowned expert on autism and Son2 was very keen to hear her speak.

So off we went to Reading, but by the time we had arrived and found the Town Hall, Son2 had become overloaded, fallen into intractable silence and could not be persuaded to eat or drink anything. This was not looking good and I wondered if we should just go home. But I had only booked because he had wanted to go and I knew hearing Dr Grandin would be important for him.

Dr Temple Grandin & Son2

Dr Temple Grandin & Son2

There was a while to wait before the show started and I offered Son2 some cash to see if he wanted to get anything in the cafe. Off he set, with me trailing behing him. His eyes alighted outside the auditorium on Dr Grandin signing books. He said nothing and we went down to the cafe where he could find nothing to his liking. Back we came and he slowed down at the book buying table. I asked him if he would like a book and to get it signed. He would.

The queue had diminished and we got the last book. Son2 met Dr Grandin for a brief moment as she signed his name and hers and he went back to his seat clutching his signed copy. He managed a small drink and a bite of his sandwich. I knew that as soon as she started talking he would be transfixed and so he was, for a full hour.

Dr Grandin spoke about how important it was to engage young people with autism, for them to participate through common, shared interests and how to teach them bottom up, not top down. By this she meant using specific examples to teach concepts, to teach the child according to the way he learns. She said it was also particularly important to discover the root cause of a child’s problems, whether it was biological, sensory, fear/anxiety or a hidden medical problem. It was important to give an instruction for the type of behaviour you want, rather than a negative instruction.

Dr Grandin said that much more research needed to be done into sensory issues, which Son2, in particular, is very sensitive to. She also pointed to how so many young people with autism were without basic skills and how fifties-style parenting, emphasising behavioural expectations by way of routine, benefitted young people with an ASD.

Her advice to teenagers with ASDs was that if you find it difficult to interact with people socially, then impress them with what you can do – build up a portfolio of the things you are good at and play to your strengths because talent gets respect. In this way, you can find a place for yourself in society.

Dr Grandin has a new book out, the same one that Son2 has today taken to school. It’s called Different… Not Less: Inspiring Stories of Achievement and Successful Employment from Adults with Autism, Asperger’s, and ADHD.

We didn’t stay for the Question and Answer session after the break – Son2’s attention was exhausted and so was he. But he took a lot from it, I could tell. Dr Grandin is very similar in her thought processes to him and I believe he was inspired and comforted to realise that so many people had come to listen to someone just like him.

Before we left, I asked him if he’d like his picture taken with Dr Grandin – because I knew he would. I explained to Dr Grandin that Son2 now needed to go home but he would really love his picture with her. “We’d better do it right now, then!” she said and Son2 quickly went to stand at her side. It’s not a great quality image, but I know it’s one Son2 will treasure.

On the way home, he was ready to eat his sandwich and have a proper drink. It hadn’t been an easy trip, but I know that he was satisfied and that’s enough for me.

SEN – The Next Steps – My views & Meridian Tonight feature

So, there’s been much furore today about the headlines for proposals that  450,000 children be ‘struck off’ the SEN register. This is a bit of a stupid headline, to say the least. I was interviewed by Meridian Tonight (clip at end of post) about it for my views as a parent of SEN children.

The story was linked to this announcement from the DfE today that continues on from the SEN Green paper on Special Needs and Aspiration, that was trailed last week. It seems that any story about children with special needs is pounced upon by the haters and the critics. Oh, those bad teachers. Oh those terrible parents. Oh those benefit scroungers. I can guarantee you that none of those people who make moronic comments like that are either a teacher or have a child with special needs, which means that they should, quite frankly, shut up.

The key points in today’s “Next Steps” announcement were:

  • The new Education Health and Care Plan (EHCP)  will eventually replace the statement and will last from birth to 25 for those children who need it. The EHCP will be a “single assessment process, … ensuring that families have confidence that all of the different local agencies – across education, health and social care are working to together to meet their needs. This will stop parents having to have to undergo repeated assessments with different agencies.”
  • Personal budgets: all families with an approved education, health and care plan will have a legal right to request a personal budget, if they choose.
  • Joint commissioning: LAs and clinical commissioning groups would have to put arrangements in place to ensure that services for disabled children and young people, and those with SEN are planned and commissioned jointly.
  • School choice: parents whose children have an education, health and care plan would have the legal right to seek a place at any state-funded school of their choice – whether maintained, academy, Free School or special. LAs would have to name the parent’s preferred school so long it was suitable for the child, did not prejudice the education of other children or did not mean an inefficient use of funds.
  • Local offer: all LAs would publish a ‘local offer’ of  support, so parents would know exactly what is available instead of having to fight for basic information.
  • Mediation and the tribunal and children’s right to appeal to a tribunal: introducing mediation before Tribunal for disputes and trialling giving children the right to appeal if they are unhappy with their support.
What some sections of the press jumped on was that the statement from the DfE mentioned an OFSTED report from 2010 that claimed many children were wrongly identified with SEN. I touched on the reasons for this in my post on Saturday, so you can read it there. But to say that this happens often or even routinely is a huge exaggeration.
It is quite right that the government should seek to provide the most appropriate provision for children whether they have actual SEN or whether they need nurture groups because of family difficulties. If they can bring forward the funding and expertise to put this in place, then they should do it as soon as possible.
What they should NOT do as soon as possible (ie, this summer) is think that their policy can be informed by any results from pathfinder trials of the EHCP. In Surrey, this is still at a very early stage – ie, we, at Family Voice Surrey, are not even sure that any families are yet trialling it, so to have any firm conclusions drawn by this summer is optimistic in the extreme.
Tomorrow, Surrey has another day-long EHCP meeting that myself and my FVS colleague, Angela Kelly, will attend with great interest.
What must NOT be done is for these plans to be rushed through for political reasons – we are talking about the futures of some of society’s most vulnerable and if you’re going to shake up the system it should be done properly, in a considered manner.
Anyway, now for the light relief. Christine Alsford from Meridian (where I cut my TV reporter teeth) came over and filmed me and Son2. Son2 only agreed if he could be in his BodySox and the crew thought this was a genius idea.  What do you think?

Special Needs Jungle in the Daily Telegraph. What I really think

There’s a story about SEN in the Daily Telegraph today “Can 20 per cent of schoolchildren really have special needs?” by Peter Stanford. It’s already attracted lots of comments, some informed, others somewhat less so, shall we say.

The story is a follow on to other, recent reports blaming rising SEN figures on either bad parenting or bad teaching or both. Peter wanted to find out the real root of it, but it seems even he was flummoxed.

He interviewed me for the piece and the general gist of what I said is there, although I didn’t give up my TV career to go into school to help, I gave it up to be with my children at home because I decided it was a much better use of my time than giving good “TV smile”. Being able to help in school and see for myself how things worked was very useful, especially in the light of my boys’ difficulties. I could see for myself how different they were to other children, in a classroom setting. I could see that the teachers were, in my opinion, of varying quality, ranging from totally brilliant to inexperienced and out of their depth.

What I said when speaking to Peter but didn’t make it into the piece, was that I believe that the pressures of today’s society on children, parents and teachers are immense. Responsible parents are faced with the knowledge that their kids are going to have to survive in a highly competitive world and are more vigilant when they see their child not doing as well as they might. Responsible parents just want their child to have the same opportunities as every other child to reach their potential – and that sometimes means accessing extra help through the SEN system.

Are these parents all middle-class? Many are, but far from all of them. I know this to be true from the emails I get. It doesn’t matter what class you are, the difference is how much attention you’re paying to your child and that has nothing to do with class.

Now, it is obviously true that a child does not automatically have SEN just because they are not at the top or even the middle of the school class. But a parent knows their child the best. When their profile of achievement is uneven or their social difficulties affect their ability to learn, intervention is warranted. In a mainstream school, a teacher has thirty children in the class. That’s thirty children of differing ability, different learning styles and varying levels of attention and behaviour, whatever their background.

Teachers aren’t super-human. They’re overworked, stressed (whatever the man from OFSTED says) and under-resourced. Can one person pay as close attention to the needs of thirty totally different children as each child requires? Of course not and the blame is not theirs. The SENCo might have three other roles in the school. The IEP may not be worth the paper its written on because it’s rarely looked at (through time pressure, not because the teacher doesn’t care).

This is why responsible parents have to step in to make sure their children get the help they need. They’re not “sharp-elbowed” or any other derogatory term. They are responsible, vigilant and determined, because if they don’t help their children, no one will. And don’t think that they are able to somehow ‘cheat’ the system. Only around 2% of children actually get a statement – far less than should have one in my opinion, but those that do have been through an unforgiving assessment process of experts and, sometimes, the scrutiny of an appeal to the SEND Tribunal

And what about those children who are not blessed with determined parents like these? The ones who are often put on the SEN register because it’s the only thing in a teacher’s toolbox to give them a leg-up? This is the huge inequity of society. These children often fall through the cracks. They end up in a continuing cycle of deprivation. They may even end up in the criminal justice system.

They may or may not actually have special educational needs to start with, but if their home life is insecure and they live in poverty, it is sure to have an impact on their learning. They may just need attention and nurturing to give them self-esteem and confidence in themselves. Former head teacher, now an Educational Psychologist, Charlie Mead, has an answer and it’s not rocket science. He has instigated ‘nurture groups’ in secondary schools with amazing results.

In this presentation he describes how nurture groups in mainstream secondary schools can enable children with “special educational needs” to receive the support they need and improve their educational outcomes making the best use of scarce resources. Watch his presentation below. To see him speak, book for the TAPF SEN conference in June at this link

Sensory needs met with a Body Sox

Many children with special needs have sensory issues, including my two. Their school used Body Sox which Son2 absolutely loves. He asked me to source one for him and here he is modelling it. I think it’s him, anyway…

Why I turned my back on my TV news career

Recently I appeared in Woman magazine – a small section in a feature entitled, “Meet the regret-me-nots”

My piece was headlined, “I regretted becoming a full-time mum”, which isn’t strictly accurate – rather I found myself, like many mums who give up professional life for stay-at-home motherhood, feeling a certain wistfulness for opportunities forgone. I also experienced the loss of self-esteem that many women feel when they no longer have a full-time, possibly high-flying career. In fact, when I stopped being a television news presenter, even my own mother (herself a career woman) stopped boasting about me. After all, I was just a mum now, wasn’t I?

Well, I happen to think that parenting is the most important job that anyone can do – because done badly you can ruin the life and chances of another human being. And if I’d been at work, I may not have had the time or energy to work out why my children were different. The subtleties of Asperger’s can easily be missed or misinterpreted and that can lead to the child not getting the help they need to fulfill their potential.

You can, of course, be a great parent and work full-time and I would never suggest anything else – other peoples’ lives are simply none of my business. But for me, once I’d held my son, my decision was made. I think my colleagues were a little shocked that this ambitious, somewhat fierce, journalist could just walk away from what I loved doing so easily.

We had to move to a cheaper part of the country to afford it at the time, but my own chaotic childhood had left a deep yearning for a stable, traditional family structure and I’m lucky that, despite the special needs issues, we still have that. I’ve also replaced my career in the often soulless world of television news with something better – my family, my writing, the special needs work and my new job helping people affected by congenital limb differences. I’m a better person because of it. Maybe now my (sadly, late) mum would even boast about me again if she could!

Anyway, now a new issue of Woman is out, I figure they won’t mind if I post my own little piece here. You can find the Woman Magazine website here. Thanks to reporter, Nikki Osman, who wrote the piece. Click the image or the link below to read it for yourself.

My husband and I are off on a spa break tomorrow, courtesy of GP carers breaks in Surrey  If you’re a carer in Surrey, you could be eligible too. If you know someone this applies to, please pass the link on to them.

Look out for the regular story round up tomorrow!

Woman Magazine 9April-Tania Tirraoro.

Conversations with an Aspie teen

When your Asperger’s son is deep in adolescence, it’s sometimes hard to tell whether their behaviour and conversation is more autistic or teenager. Two examples below from (extremely intelligent) Son1:

Son1: Are you saying I’m fat?

Me: No, it’s just that I need to put my office chair down and I don’t have the weight to push it.

Son1: So you ARE saying I’m fat.

Me: No, but you’re five inches taller than me and therefore heavier.

Son1: I know you think you’re 5′ 3″ but you’re not. You’re 5′ 1″. Which means I’m seven inches taller than you.

Me: Deep sigh.

Later…

Son1: What’s this suitcase doing at the bottom of the stairs?

Me: It’s your suitcase that I’ve been asking you to take upstairs for the last three days.

Son1: No you haven’t.

Me: Yes I have, ever since you got back.

Son1: No you asked me to take my CASE upstairs and this is a suitcase, so I didn’t know what you were talking about.

Me: Slaps own forehead.

Teachers didn’t understand my bright sons’ ASD, says Tania Tirraoro (SEN Magazine)

I’ve just been sent a pdf of my article that was in the last issue of SEN Magazine.

The magazine is a great read – lots of useful ideas for anyone – parent or professional – involved in SEN. The have a free trial offer and it’s just £32 a year to subscribe. I take my copy to read while I’m waiting in my car for my boys to finish at school

Click the link here to read  in full about whether teachers find it hard to recognise special needs in bright pupils.

An interesting addendum to the piece, we often hear (and experience) how teachers miss signs of SEN or fob parents off saying, they child is ‘just young’. My sister, herself a teacher with SEN qualifications (a rare bird, is she) says she is often leery of mentioning to parents when she spots a potential SEN problem such as ASD or ADHD in a child. This is because often the parents don’t want to know and can be quite aggressive when the matter is raised by a sharp-eyed and concerned teacher. The pendulum swings both ways….

Click the image below to open the story. SEN Magazine can be found online at www.senmagazine.co.uk. Twitter: @SENMagazine

Ritalin, talking therapies and what I think our kids really need…

The Health Minister, Simon Burns has said that the chief medical officer and the NHS medical director are planning to write to clinicians to remind them of the full range of NICE guidelines on conditions—including ADHD—that affect children’s mental health. It came in response to an adjournment debate on 25th October 2011 called by MP Pat McFadden on the rise in prescriptions for children of the drug methylphenidate (Ritalin, Equasym etc) used to treat people affected by the symptoms of attention deficit and hyperactivity. These symptoms affect behaviour and the ability to learn and as well as being found in ADHD, are also co-morbid in young people with autism, Asperger Syndrome and other similar development disorders.

Mr McFadden made a plea for the Minister to carry out a proper, comprehensive review of the use of these drugs involving professionals from the medical, psychology and teaching fields, as well as the families of those who have been prescribed the drugs. He asked the Minister, “Will he commit his Department to carry out a proper research project into the use of the drugs, including the age of the children receiving them? Secondly, in the light of the huge growth in prescriptions, will the Government carry out a proper review of practice in the field, as called for by the Association of Educational Psychologists, before the new guidance comes into effect in 2013?”

Mr Burns said he himself had a family member who was successfully being treated with Ritalin. “Across hospital and primary care, the prescribing of drugs for ADHD increased by around 12.5% between 2007 and 2010, the latest four years for which data are available, and by around 6% in 2010 alone. Prescribing in primary care alone increased by 22% in that four-year period, reflecting a significant shift in prescribing activity from a hospital setting and into primary care. Looking back further, one sees that prescribing in primary care has tripled in the past 10 years.”

However he pointed out that the cost of doing nothing was too great for those affected and that, if left untreated, mental health problems can lead to low attainment in school, antisocial behaviour, drink and drug misuse, worklessness and even criminality in adult life. He said, “Getting things right for children and their families—through a broad range of support to promote good mental health from the start of life, through the school years and into adulthood—can make a real difference to young lives.”

Yesterday, the government announced a further £32 million pounds for child mental health services, including talking therapies. While this may seem like a lot, when split across the country, it might not go as far as hoped. Talking therapies take time and require therapists qualified in techniques such as cognitive behavioural therapy, particularly in its use with children. I believe that this issue should not be looked at in isolation. It is an educational, parenting and medical issue all at the same time.

In educational terms, it should be looked at whether the right learning environments are available to teach children for whom sitting still in a classroom is impossible. There is plenty of practical advice available giving tips and strategies to help manage students with ADHD and help them thrive in a regular school environment. What is needed is the will to implement them consistently at a classroom level. That takes teacher training. And when I say consistent – that is key. One of my sons one year in mainstream had a teacher who managed him well. The next year he moved into a class with an older teacher who didn’t even realise he had a diagnosis, let alone the will to adapt her teaching style to help him. It’s no use having teaching assistants who are just mums looking for a part-time job. If they are to work with learning disabled children or those with attention or hyperactivity issues that may be clouding their true ability, the TAs need to be well trained. Some are and sadly, some aren’t. That’s not good enough. Our ASD sons were both treated for a while with medication. But they no longer need it because they are now in the right educational setting. This is not only my view, it was  the opinion of their paediatrician, an experienced and well-respected man.

Parenting wise, parents who have children with difficulties need support. They need to learn techniques to manage their children effectively and I’m not talking only talking about parents from lower down on the social scale. Just because you have a good job or a good education does not mean you come automatically equipped with the parenting skills needed to cope with life in a household where there is constant stress and discord because of the behaviour of one of your children. I know, I’ve been there and I know plenty of other middle-class good parents in the same boat.

Medically, and here we come back to Mr McFadden’s debate in parliament, we need GPs who don’t fob parents off, and we need specialists who listen to parents and who have the knowledge of and access to, up to date research and therapies pertaining to children’s mental health. They need to be able to work with parents, schools and CAMHS together to be able to put the right package of treatment together for the child concerned. Yes, it takes time and money – well they’ve just given £32 million, so there’s cash to be spent. But when you are talking about a child’s future you cannot take a piecemeal approach. Questions such as why is the child having the behavioual isssue – is there an underlying medical condition? Are they dyslexic? Do they have a speech and language problem that has gone unrecognised? A holistic approach is needed. Many of children like these turn out to be gifted in one area or another and need to be given the chance to let their talents find a way to the surface. If nothing else, in the 21st century and with all the research already available it should be within our power to help some of our most vulnerable people to thrive.

Lastly – and this is key. the media should stop being so damn judgemental of parents and children with behavioural problems and yes, Daily Mail, I’m talking to you and your readers who are so quick to condemn and who publish ill-informed opinions and blatant untruths about this already embattled section of society. I believe the reason the Health Minister, Mr Burns, gave such a thoughtful and informed response was because he himself has personal knowledge of the issues. Which just proves the adage about walking in other people’s shoes.

The sidelong glances that can cause anguish

One of the most difficult things to cope with when your child has a ‘hidden’ disability that affects their behaviour or social communication ability, is the attitude of other people, even other parents.

When my older son was small, he would always be on the go and would find playing with other children difficult, even though he wanted to. He would be unable to sit still in class, would always need to be first and when upset could go into a deep, black sulk that would be incredibly hard for him to recover from. I often felt that people were looking at him and blaming his ‘bad’ behaviour on a lack of parenting skills.

At first, he was invited to parties and to tea, but play-dates became few and far between. On the way home from school he would sometimes be in a fury because of something that had happened in school and would march off in front of us or sit on a wall and refuse to move. Other parents would pass us by, maybe with a pitying smile, sometimes with a disapproving look. What a terrible mother she must be, I could almost hear them think.

At the time, I was searching for answers to my son’s difficulties. Other parents, I know, thought I was just trying to blame his behaviour on ADHD when he was just a naughty boy. After all, he looks perfectly normal and he’s clever. He just needs a firmer hand! Then when he was initially diagnosed with ADHD (although later changed to Asperger Syndrome) and we tried medication, other mothers’ disapproval was palpable. All he needs is better parenting – what kind of mother gives her kid ‘the chemical cosh’?

Once, following the internment of my mother’s ashes, we went for lunch at a local pub. We were several hundred miles from home so we had little option. My younger son, who also has AS, was distressed, hungry and thirsty. When he is like this he becomes unable to speak or make any decisions even about what he wants to eat. He made something of a scene and then, when food came, I had to sit him on my lap and help him eat and drink. A woman at a nearby table had glared at us throughout with the most sourpuss look on her face that you can imagine. I had had enough. “What are you staring at?” I challenged her. “My son is autistic and we’ve just buried his grandmother!”. The woman looked shocked that I had called her out. “You’re the one I’m looking at,” she claimed, which could not have been further from the truth. My sister, Deborah, who had seen the same thing, said to me, “Good for you.” That woman had passed judgement on my son’s distress, not knowing anything about him or us. I feel angry now, just remembering it. She’s just lucky my sister Claire hadn’t been there; she’d have got up and smacked her one!

It’s people like that woman and other self-righteous mothers who have no experience of children with so-called ‘hidden’ disabilities that make life harder for those of us who do. Sure, there are bad parents out there, but before people judge, I just wish they would consider that the child that’s having a meltdown in the supermarket may just have special needs and the harried parent with them is probably exhausted, embarrassed and hoping for understanding, not condemnation.

A Good Image for Asperger Syndrome

Cover for This Last Summer

I’m about to blow my own trumpet, so look away now if  you’re not into hearing people’s good news…

I’ve just published my novel, This Last Summer, on Amazon Kindle and it will also be available in print in a few months. I’m writing about it here because the book features a character with Asperger Syndrome. Ben Chambers isn’t the main character – that’s his TV reporter sister, Maddie, but my aim was to portray a high-functioning character with AS to show that it is perfectly possible for people with AS to live fulfilling lives, despite their difficulties.

Ben is a young man just completing his Phd, still living at home, but often underestimated, even by his own family. Sure, he has difficulties in tough situations – but he has a good support system and this makes all the difference to him.

I hope I’ve done a good job with Ben – if you get a chance to buy the download on either Kindle at Amazon UK, Kindle at Amazon US and Smashwords in all sorts of formats. It’ll also soon be available on ibook and at Barnes and Noble in the US.

Books I recommend for Special Needs

I have quite a collection of books about special needs and parenting and thought I would share some recommendations with you. I usually buy mine from amazon.co.uk, so I’ll link to each book so you can have a closer look.

1-2-3 Magic – Thomas Phelan – This is an absolute must for all parents who want to regain control of their children and their own lives. It’s slim and easy to follow and very very simple. The key is to talk to your children about this new method of discipline, and when you are counting – don’t say anything else! Both parents must buy into it and FOLLOW THROUGH. Our usual punishment is removal of computer privileges if we get to three without compliance. We don’t usually get to three. It works.

The Complete Guide to Asperger’s Syndrome – Tony Attwood. The foremost expert on AS. Great book, easy to read. I used some of this to help explain my son’s condition for his statementing process.

Kids in the Syndrome Mix of ADHD, LD, Asperger’s, Tourette’s, Bipolar, and More!: The One Stop Guide for Parents, Teachers, and Other Professionals (Paperback) -by Martin L. Kutscher; Tony Attwood; Robert R. Wolff.  – Excellent book explaining the co-morbidities and how you can take practical steps to help them.

Hot Stuff to Help Kids Chill Out: The Anger Management Book -by Jerry Wilde.  A slim volume That is written to be read alongside your child and shows that that anger actually damages themselves and helps children take responsibility for their own emotions. A great little book.

Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family (Paperback) -by Jude Welton – Another slim volume written from a child’s perspective explaining his view of the world as a child with AS. Very useful for siblings, friends, teachers and grandparents. Lobvely illustrations and easy to read typeface.

If you have any recommendations of your own, please leave a comment, I’d love to hear from you.

Journey’s End for our Statement – And a Brighter Future.

Just to update the post about my son getting the statement of Special Needs, we’ve just heard that the LEA has agreed to fund him at his independent special school. Great news and what a relief!

When they issued the draft statement they said they were concerned how he would manage in mainstream secondary.. so they were going to recommend mainstream secondary with support. Now we know, don’t we, that for many children with Asperger’s, it’s not a question of someone sitting with them or being withdrawn into social skills groups for so many hours a week. It is more a constant nudging that they need and a vigilant eye for when things are starting to go wrong.

During my research, I spoke to several mainstream SENCOs (Special Needs Coordinators). They are all dedicated to their pupils and do a good job in difficult circumstances, but one said to me that they sometimes “don’t hear from their ASD students for months until something goes wrong”. She was saying this to illustrate how these students ‘coped’ adequately with day to day school life. All I could think was that at my boys’ school the teachers are in constant contact with the boys and things are never left for months until something goes wrong. Although this teacher was trying to be positive and reassuring, I knew then that my son would end up depressed and unhappy in an environment where he could go unnoticed for months at a time.

Why should he simply ‘cope’ when other children thrive? This is not what I wanted for a boy who is incredibly bright with enormous potential but who is also extremely sensitive with sensory issues and problems with social integration. On the face of it, you wouldn’t think there was anything different about him. But it is precisely when ‘things go wrong’ that you see that he is not the same as everyone else and does not have the coping skills that most children his age have.

This is what More House School teaches him. As well as supporting him academically, it supports his social needs on a daily basis and when they see that he is heading for trouble or he becomes upset, they can help him develop the skills he needs so that when he is an adult, difficult situations don’t throw him off-course. This means that when he leaves school to go out into the outside world, he will be as well-equipped as anyone else to deal with all kinds of situations and different types of people.

If we hadn’t managed to get the LEA to agree to fund him, we would have had to pay £13,000 a year for our son to receive the right kind of education to give him the best chance of a successful life. We had tried mainstream and had found that, with the best will in the world, the kind of support he needed wasn’t available. So why should we have to pay for him to get what every other child in mainstream gets without any bother? We didn’t opt out of the state system out of snobbery. We were, in effect, forced out, because our sons were not mainstream children.

Our LEA seems to have woken up to the fact that it is cheaper and easier to pay for children to go to this particular school than it is to find all the support they need within the state system. If they had to make their own school for high-functioning ASD boys, complex dyslexics (who often have co-morbidities), and children with great Occupational Therapy and Speech and Language needs, they would have all the capital costs to pay on top of  the per-pupil cost. These would include buildings and maintenance, electricity and all those other costs that don’t include teachers and support staff salaries and benefits.

Just paying £13,000, and leaving it up to someone else probably seems like a great deal. We haven’t asked them to pay transport – we moved to be closer so I can easily take them myself every day as I would if they were at any school. This is my part of the deal as transport costs are a never-ending headache for LEAs and I see no reason to add to the burden when I am in a position, and more than happy, to take them myself.

However, although Surrey, our LEA, have done the right thing for both my sons, (and three cheers for them), I know of other families who are having to fight tooth and nail and at great expense to get their local authority to do the same. I know of one child in Hampshire, who got a statement with no argument but despite his severe social as well as physical needs, the LEA thinks he will be able to cope with a mainstream placement against ALL the advice they have received. This is pig-headed stupidity and a game of brinkmanship with parents to see who will blink first. There is no logic to it and when the case gets to Tribunal, Hampshire will lose and will have wasted taxpayers money fighting a case that didn’t need to be fought. The family will have suffered emotionally, financially and completely avoidably.

Hampshire have recognised this child’s needs for OT and SLT in part two of his statement and yet have made no provision in part three of the same document and they think this is acceptable. They think it is okay just to dump him in the local secondary where his needs cannot be met (and the family has the documentation to prove it). Hampshire should know that it won’t intimidate this boy’s mum. She is every bit as determined as I was to make sure her son gets the placement he needs. It is appalling that she should have to put herself under considerable strain to do so. I will keep you posted as to what happens.

An Actor’s Life For Him.

My 11 year old has just had his first co-starring role in a school play. He’s currently playing Ratty in a production of ‘Wind in the Willows’ at More House School.

When he came and told me that he was planning to audition, I was very worried about how upset he would be if he didn’t get a part. I wanted to shout, “Don’t audition! It’ll make you miserable!” But I held my tongue and told him what a great idea it was.

On the way home from school a few nights later, he was telling me what he had had for lunch and then, “And by the way, I’ve been cast as Ratty in the play.” I nearly crashed the car, gripped by a sense of excitement and fear. Excitement because someone had had faith in him to cast him (Thank you, Mr Kirkham) and fear because I knew that over the coming months we would have to HELP HIM LEARN HIS LINES.

Now, I have no objection to helping him, quite the contrary, I used to do the same for my mother in her amateur dramatics days. The fear was that he wouldn’t want help and wouldn’t bother to spend any time learning his lines at all. My son has Asperger’s and is very bloody-minded and stubborn. I worried he would refuse any offer of help and, true to expectations, the only time he would let us help was when he was in the bath. We would then have to perch on the toilet lid and go through the script with him as he soaked in the bubbles. Still, at least he was learning it.

The weeks passed and as often as we would ask him if he wanted to rehearse, he would politely turn us down. I ground my teeth with anxiety as I imagined him on opening night, being prompted with every line and ending up humiliated.

The Saturday before the performances, he finally let us help and we were horrified to find that there were several scenes that he only had a very hazy recollection of. In a frantic effort to assist, we recorded the whole script onto his computer so he could listen to it and practise.

Luca as Ratty

Luca as Ratty

Then, last night came. We filed into the hall, nerves jangling, taking seats in the second row, as we were banned from the front in case we put him off. The lights went down, and he was on stage, delivering his lines with perfection. He even prompted Mole at one point. How on earth did that happen? The boy was fantastic! They all were!

The production was beautifully staged, the live music was impeccable, the set imaginatively decorated, the costumes perfect. It was nothing like a ramshackle school play, it was … slick, impressive and great entertainment.

For the first time ever, as I watched my son on the stage, I saw him not as my 11 year old son, but as a young man in his own right, not connected to me at all; an individual with talent, confidence and guts. I was so proud, I could have burst.

For all his problems with ASD, my son is a truly remarkable young man. But although we have tried our best to help him as parents, it is the staff at More House School who have found a way to nurture his gifts, with expertise, understanding and always, encouragement. They make him feel that he has something to offer; that he wants to audition and join in, that there is a place for him and he is welcome. That is no small achievement and proof that with the right educational setting, obstacles can be overcome and where everyone is treated as the individual they are.

It is nearly the end of the school year and I expect I’ll gush again before then about how wonderful our school is, but for now, Mr Kirkham and your amazing team, three cheers for you all and a huge thank you!

Give ASD children the school provision they need

The Times today (Saturday 13 June 2009) has an article about children with special needs being excluded from school. It points to a recent survey showing that 55 percent of parents of children with autism saying their child had at some point been unofficially excluded from school.

Other figures in research by the paper show that although children with special needs make up a small proportion of children in schools, they make up a huge percentage of those excluded. The problem is worst in primary schools, largely because of a lack of resources.

I think that it is not just a lack of resources but the fact that schools are increasingly expected to cope with children with  emotional and behavioural needs as well as autism, with little or no extra training. A mainstream teacher should be just that – a teacher who teaches mainstream children. He or she is not trained to be a special needs teacher and should not be expected to be one just because the government says so-called ‘inclusion’ is key.

The situation is made worse by the lack of specialist places for children with special needs. With the closure of many special schools and lack of places for children with conditions such as Asperger’s Syndrome in the first place, these children often end up with an inadequate education because they have difficulty accessing the curriculum in the same way as their ‘normal’ peers. They also have problems making friendships because they are perceived by other children as ‘weird’ and who wants to be marked out as being friends with the weird kid? This leaves the ASD child socially isolated, sometimes bullied and learning that they have no place in ‘normal’ society.

There are those whom I have heard say (including the Schools Minister Sara McCarthy-Fry), ‘Well, they’ll have to mix with all sorts when they’re grown up, so school is a good training ground for when they’re adults.’  This makes me incensed; so, they should get used to being friendless, excluded, shunned and bullied because it’s going to happen to them as adults? Is that what they would want for their children? Secondly, it is not true that they are likely to mix with all sorts of people when they are adults. We all live in fairly small mini-societies and communities where we tend only to meet people broadly similar to ourselves, unless you are someone where it is your job to mix with all sorts of people such as those in public life or public service (note the word ‘public’). This is hardly the likely career path of someone with ASD. Unless of course, they get the proper training when they are young.

If they can’t get this specialist training at mainstream school because of a lack of resources and expertise, where are they going to get it? At a special school? Don’t be silly, they’ve either been closed or are over-subscribed.

It then falls to the independent sector to fill the gap. These independent special schools usually cost a lot of money because that’s what it takes to provide suitable specialist help to give these children a shot at a reasonable life. I say, if that’s what it takes, then that’s what it takes and the Local Education Authorities should cough up and pay unless they’re willing to find capital resources to invest in their own facilities.

There are good state special schools that can provide for children with severe special needs. But it is those with higher-functioning autism who are left to cope in mainstream school with or without support because there’s nowhere else in the state system for them to go.

My boys, both with Asperger’s, have experienced both mainstream and independent special school. I have nothing but praise for the teachers in their mainstream school; they did their best given the resources and time they had at their disposal. But it was not enough and I am sure they would be the first to admit it. Now at their independent school, they have the vital small class sizes they need, specialist teachers, access to Speech and Language and Occupational Therapy where needed, counselling when required and mentors who keep in close touch with them.

I was told by one SENCo at a good secondary that they could cope with children with Asperger’s and sometimes she didn’t have a problem for ‘months on end’ until something kicks off and it all goes pear-shaped. At our school, this never happens. Things never get out of hand because they are not allowed to. It’s a small school and teachers know what’s going on with the boys so things can’t kick off in the first place. That’s the difference.

My boys are getting the social and key skills training they need to help them cope with the ‘real world’ as well as a good academic education. For them, you can’t have one without the other. I had to work hard to get the LEA to pay for one son and I’m still waiting on the outcome for funding with the other. Until then we’re paying £12,000 a year ourselves which is not easy to find.

The point of ‘inclusion’ is to be included in society when they are adults, not stuffed into a one-size-fits-all classroom in the hope that they may learn social skills through osmosis. That’s politics at its worst, where dogma overcomes common sense and expert opinion.

Child-Free.. as free as the wind blows..

This morning, without so much as a backwards glance, both our boys climbed on board a coach with their classmates and set off for their annual trip to PGL. For us, this means no children in the house for the next four days. We still have the dog of course, but he doesn’t put up a fight at bedtime or complain that dinner is ‘disgusting’.

At the same time as feeling ever-so-slighly elated, our hearts do go out to those brave teachers venturing forth with fifty boys aged between 7 and 11, all with some type of special need. These range from dyslexia, to speech difficulties to Asperger’s Syndrome. The teachers know only too well what puzzled faces could ensue with the saying, ‘It’s raining cats and dogs’.

Far from being tough little tykes, practically all these boys have in their backpacks their cuddly toys, blankets or other comforter, even the big strapping ones like my 11 year old. He has his old cotton cellular cot blanket, a stuffed reindeer and two stuffed Club Penguin plushies, all shoved down into his rucksack along with his tuck for the trip.

Our boys went on the trip last year and then, there were  a few tears from my youngest before he set off, but as soon as he was on the coach, he was smiling again. I shed more tears on the way home at the thought of them being away from me on a school holiday for the first time. When they returned, I was going through Son1’s bag and there was a suspicious amount of clean underwear, an untouched toothbrush and a still-neatly folded flannel. It turned out that he hadn’t washed, cleaned his teeth or changed his pants for the whole four days.

Despite this squalour, he still managed to bag himself a posh girlfriend at the end of trip disco. She rang him so often afterwards that I heard him say to her, “Can you not ring me so often, it’s getting a bit annoying.” Oh dearie me, he has a lot to learn.. but then he was only 10 at the time.

This year Son2 is determined to grab himself a girl as well. He has carefully chosen himself a pink linen shirt from Zara and refused to get his hair cut so it’s nice and long and trendy. However, after his success last year, Son1 is uber-confident that the prep school fillies will be throwing themselves at his feet again. He’s offered his brother a few pointers, but let’s hope his tips on personal hygiene aren’t among them..

See my other blog – Not As Advertised

I’ve decided to start a second blog. I know, that’s just greedy but there are plenty of them to go round if you want your own. It’s called “Not As Advertised” and it’s for all those posts that I don’t want to put on here because this site focuses on special needs.

Not As Advertised - Try it and see!

Not As Advertised - Try it and see!

It’s about how the life you expected to have never turns out as you expected -hence the title,  Not As Advertised. If you like these blogs, please take a look at Not As Advertised and I’d be very pleased if you followed it..

The latest blog is entitled ‘It’s my birthday’ because it is. My birthday. I’m double 21. How on earth did that happen?

Long ago..when I was somebody

Long, long ago, before I was ‘Special Needs Mum’, I had a great career as a television journalist and news reader. I loved it – the job, the lifestyle, the image, everything. My last job was reading the bulletins that went out on NBC/CNBC Europe – I was famous in Sarajevo, for God’s sake! (UK, not so much!) I may have gone much further if I had stuck with it.

So what happened? Why would I give all that up? The answer, my friends, came in the form of two very demanding sons, born close together and from whom I could not be parted.

I read the other day in the Sunday Times magazine about Natasha Kaplinsky combining motherhood with her high-flying career and not getting much sleep, despite the inevitable nanny/helper. Her career was much more high-flying than my own when I had a baby, but I could have gone down that route, getting a nanny who would help take the strain while I continued gracing the TV screens of far-flung places in Europe and receiving sticky fan mail written in green ink.

My baby however, was not, in retrospect, what you’d call average. He could hold his head up almost from birth. He would lie there awake at the most unkind hour of the night, his blue eyes glinting in the reflected streetlight from outside our Clapham flat. He didn’t sleep through the night for eight months. When he cried, it was loud enough to wake the dead. He crawled early and walked at 9 1/2 months; he was always on the go. We thought he might actually be an alien.

He hated being bathed, dressed, put in his pushchair, changed, put down. He liked being fed and being entertained. As inexperienced parents we thought that perhaps this is what all babies were like. Early trips to the baby gym convinced us otherwise. There was nothing ordinary about him; he was super-bright and hyperactive and it was clear to my husband and I that we could not leave him in the care of anyone else. This meant I could not go back to work immediately.

By the time he was ten months old, I was expecting our second child so again, going back to work was unfeasible.

Our second son was born with a clicky hip, needing a splint and extra care. From the time he was six weeks old, our eldest would walk by him and smack him on the head. Every time. By now, our twenty month old could do jigsaws meant for five year olds and make complicated duplo models. We were convinced he was a genius!

When our youngest began to have Reflex Anoxic Seizures just after a year old (see www.stars.org.uk for help with this condition) it was clear again that a return to work was not on the cards. He could have up to three seizures in one day, usually triggered by his brother being mean to him.

I began to do voluntary work for the charity STARS, using my journalistic knowledge to help with their newsletters and press releases. This turned into helping them with a big heart rhythm campaign (see www.aaaw.org.uk) and then on to learning about how to update their web site.

Over the years this has developed into my own business at www.tirraoro.com. I work from home because now that both my boys have been diagnosed with Asperger Syndrome and we know how they need to be helped, I couldn’t leave them in after school care or regular holiday play schemes.

Too many years have passed now for me to go back to where I was in TV and I’m too old and have too many responsibilities to compete with the young, thrusting twenty-somethings who can work all the hours they’re asked to for not-too-great amounts of money. I’m not sure it would be as much fun either, as in the seat-of-the-pants days when I worked for the newly-created Meridian TV or with mad Croats and Australians in WTN’s foreign TV News Agency, although maybe that’s just the rose-tinted memory glasses.

I read with interest all the furious stay-at-home vs working mother debates and how one is better than the other or not, but for me, the debate is much more complicated than that. I do what web-sites, PR & design work I can from home for small businesses and charities; I’ve written two, as yet, unpublished novels; I’ve passed an OU course in Social Science and I’ve successfully researched and secured two statements of special needs for my sons. And then there’s this blog, designed to help and entertain others like me.

I feel guilty for not bringing in as much money as I could if I worked full-time and sometimes I feel a little regretful at leaving a career I loved, especially when I see people I know still doing it. But I take comfort from knowing that if I had left my children to go back to my career, it would have been almost impossible to spot that they had complex and underlying special needs, nor done as much as I have to get them the help they need. Life is stressful enough as it is; with a full-time job as well, I would have been booking my stay in The Priory.

I know there are mothers of children with SEN who do work full time and their children have not missed out, but personally, I would have found it very difficult to do both, at the level I wanted without a nanny, which I also didn’t want. Having a job like I had meant working shifts, long hours, being called in when a big news event broke and not being able to say no without it dentingyour career prospects. I loved my job so much I would have found it impossible to give as much to both it and to my children without something going pear-shaped. If someone reading this does both those things with autistic children and without considerable support, then hats off to you, I’d love to know how you do it so I can write about you with admiration!

But I’m sure I am not alone. How much talent is going to waste because mothers cannot return to the hours they used to do or find a job that will give them the flexibility they need to use their talents to the full? Maybe I should start a website for people like me who are good at what they do but can only work a few hours a day. If there is already one out there – let me know!

Sports Day at More House School

We’ve just come home from Sports Day. This always used to be a day of tears, upset and general not wanting to go to school. That is, until they started at More House.

Although our eldest has always been a capable sportsman, last year we were all amazed when our youngest son won his race, largely down to the thoughtful way the PE staff had grouped the boys so that each boy had a real chance of winning. He had never won a race before, was not well coordinated, pretty dyspraxic and hated anything to do with sports, but this win, encouraged by the wonderful members of staff had spurred him on.

This year when Sports Day dawned, he was excited, a bit nervous and most of all, ready to win.

It’s amazing how the right encouragement and instilling self-belief can give a child a complete turnaround. Actually, it’s not amazing at all, it’s common sense, but it had never happened before for my son. When his PE teacher told him last year that he was really impressed with him in hockey, he held on to it all year as validation that someone (other than us, of course) believed that he could do well in sports.

During the year he has gradually gained confidence and competitive spirit. He has moved up the ability groups from bottom to top in a couple of terms and now believes that he is fast and able to win if he puts his mind to it. Now he wants to take part in sports and he wants to be picked for teams whereas before, he would do anything to avoid it.

Here is a short video of him and of his brother Luca, both winning their races. The mad woman shouting is me (who never won anything at sports and so am doubly proud)!

To cap it all, Giorgio won Most Improved Athlete of Year 5, something that I do not think he will ever forget. Tonight he is truly a happy child (for once!)

I wanted to write this post to thank the PE gods that are Messers Williams, Roddis, Faasen & of course Mr Williamson..(who could forget him?) for their dedication and enthusiasm to our boys. I’m not sure you realise how much we parents of  boys with challenges appreciate your efforts. Sports Day was inspirational and so are you.

Great News – A Statement!

Got the news we had been waiting for today – Son1 has got the Statement of Special Educational Needs we had applied for. Don’t have all the details yet and we still have to sort out placement (which if I have anything to do with it will be his current school).

This time last year the head of our school’s Learning Support department told me I should apply for a statement for Son1. I thought she was mad, because he is achieving well although his educational profile is uneven and his progress is affected by his social and communication difficulties caused by his Asperger Syndrome. Still, I thought, she wouldn’t say it if she didn’t mean it. We had been through the process before withour younger son and he is now funded at their independent special school by the Local Education Authority and I didn’t relish another trip down the same road. Still, I reminded myself, it’s not for you, it’s for my boy, took a deep breath and plunged in.

I started out by applying for an assessment, which was initially turned down (see earlier post). After they reversed the decision and carried out an assessment, it went to the area special needs panel yesterday and the news came through that he had been given a statement.

It does beg the question, why was he refused an assessment and then is given a statement and I think this is largely down to the ‘new broom’ approach at the local LEA.

I now have to convince them that paying for him to attend his current independent specialist school is the right thing to do, so no time to waste! It does show however, that if you do your research, persevere (like I said, I started this path a year ago) and you are sure of your case, then you can come out with the result you believe your child should have.

It may take longer than a year for some, depending on whether you need to appeal, but I was originally told neither of my sons would get a statement and now they have one each. I used the methods I have described on this website (see links at the top of the page) both times. So, anyone reading this who is onthe same road, take heart and don’t give up!

See the outcome here

My hero – Geoff Adams-Spink

This is an item about a hero of mine, Geoff Adams-Spink. Geoff is a BBC correspondent whom I met when we were both training to be journalists on a Post-Grad course in Falmouth. He has worked extensively across the BBC and has never let his disability prevent him from achieving his goals.

Of course, he’d never have got as far as he has if he wasn’t jolly clever, a world-class wit and superlative speaker as well but he is also an example to my boys that whatever difficulties you may have, they are surmountable with a shed load of grit and determination.

My boys have different disabilities to Geoff, but it is my hope that they will never let their own challenges stop them following their dreams.

The dog, the hand-washing and the ASD child.

As you may have read, we’ve just got a puppy, a labradoodle. He’s very cute and has transformed our elder ASD son’s life. The dog is the first thing he thinks about in the morning and the last thing on his mind at night. He’s even okay at scooping the poop without fuss, although washing his hands afterwards is a bit more of a problem.

Our younger son, who loves dogs, has got the hang of the hand washing, just not the dog. He is definitely not the pack leader where the puppy is concerned. The dog jumps and nips at him all the time which Son2 finds very distressing because he loves to pet him. The hand-washing though is going over the top. Son2 has always been known as a very, very clean child. He never forgets to cleanse his hands after using the lavatory and spends so long in the shower I’m surprised Al Gore isn’t on our doorstep offering a lecture on water wastage.

Every time Son2 so much as brushes against the puppy with his hands, he’s at the sink, massaging soap into his fingers and doing an inadequate rinse job. It’s become so bad that in the space of two weeks, he’s come down with eczema on his knuckles. Turns out, he was using washing up liquid instead of handwash and, despite it being an eco-friendly detergent, it’s apparently not done his skin any good at all. He’s now been prescribed a special handwash by the doctor that he can use as much as he likes and he carries a tube of aqueous cream around in his pocket for use at school. Sadly however, I think getting the dog to see him as anything more than another play thing is going to take longer to sort out.

The new arrival

I am not a doggie person. My husband is not a doggie person. And yet, yesterday, we brought home a puppy. Leo the Labradoodle.

We have read that dogs are supposedly good for children with autistic spectrum disorders and so, putting our own lack of need for a furry friend to one side, we searched for an allergy-friendly pup (as my husband is allergic) and Leo is who we found.

Leo the Labradoodle

Leo the Labradoodle

He has taken to his crate and dog bed as if it had been his from birth. He is already asking to be let out for his business and the boys have fallen in love with him, as have we. Son2, however, is not so keen yet on actually touching him and every time he does, carefully washes his hands immediately afterwards. Having a dog has made no difference however, to Son1’s hand-washing habits, or lack thereof.

All of a sudden, Son1 & Son2 have become puppy experts, telling us what to do and how to do it. They have already spent much less time in front of the TV and used less computer time as they check on their charge and ensure he has everything he needs. This is actually not too much as he sleeps a lot of the time at the moment.

Neither child has taken the opportunity to scoop the poop yet, but it will only be a matter of time and when he is big enough to go for walks, this is Son1’s department as he is rather like a puppy himself and needs walking every day.

I have taken to heart The Dog Whisperer‘s advice that you must be pack leader to be in charge of your pooch and I have decided that this is the same for raising boys too, even those with Asperger’s, if not more so. I think this whole dog thing is going to work rather nicely.

SNM Holiday 3: Incident on the beach

So, we were well into the holiday, we’d done Goonhilly Earth Station where Asperger’s Son2 had had a tantrum because he wasn’t heavy enough to go on the Segway Tour and then Asperger’s Son1 had a tantrum because we said if one couldn’t go then no one would (to avoid unbearable crowing afterwards). We’d done the Eden Project where despite all the amazing things to see in the biomes, the restaurant and the shop were still the most popular attractions.

So it was Thursday, it must be Tintagel. I was particularly looking forward to going up to the castle as the last time we were there we’d gone the wrong way and had to climb down a steep grassy embankment to get to the castle by which time my legs were too wobbly to go up it. This time, we knew better. The five of us, including Grandma, went down the equally steep hill to the castle but at the pay station, Son1 decided he wasn’t going up the rocky outcrop path to the castle in case he fell off and tumbled down the cliff into the sea. Now, this is a  perfectly safe English Heritage property, not for the faint-hearted, granted, as it is a bit of a climb, but safe nontheless. But he was adamant. He was not going and he was more than a little worried about his Dad going as well in case he came careening off the edgeinto oblivion and then he’d just be left with me, No-Fun Mum.

His fears were both irrational and not, as he is rather accident prone and if anyone could fall down a perfectly safe path and crash on to rocks at the bottom, it would be him. But once he had firmly refused to go up, Son2 decided he wasn’t going up either, so my husband and mother-in-law went up by themselves, leaving me to sit at the cafe and watch their progress, while the boys drank hot chocolate. One day I will get up there. One day, before I am too old to manage it.

After lunch, and further fortified by Granny Wobbly’s Handmade Crumbly Fudge (not to be missed at Tintagel), we set off in search of a beach further down the coast. The tide was on its way out and there were surfers braving the early April weather to catch a wave or two. The boys made do with rock-pool hopping and exploring and were having a great time, which meant we were too.

What happened next?

What happened next?

Son1 then starts jumping from side to side of a stream leading to the sea, bordered by boulders, some covered in slimy seaweed. Please stop that, I asked. Please stop that Grandma asked. No, we were told, it’s fun. You can guess what happened next, can’t you?

Hey, who left that slippery seaweed under Son1’s feet? A mighty splash and he lands, fully clothed, in the water. In April. Of course, it wasn’t his fault. Of course not. It was the seaweed. It was the rock. It was our fault for not buying him some shorts at the surf shop that he had wanted.

So, he got his shorts and a T-shirt as well. The nice lady, a mother of six herself, had seen it all before and put his wet things in a carrier. Son1 is now the proud owner of a  very cool Trebarwith Strand Surf Shop T-shirt and is none the worse for wear and I am just glad the lodge we stayed in had a washer/dryer.

I just imagine how boring our lives would be without our own home-grown Comedy Central players. Most people look at us parents of Special Needs children and think how sad we must be. But it’s laugh or cry. I know which I would rather do. And just think of the stories we’ll have to tell their children.

HolidayPost Number Two here

SNM – Holiday 2 – The Zoo

We booked a day as a zoo-keeper at Newquay zoo for the boys. This was an unparalleled success! The day involved being taken around the zoo with a zoo-keeper, togged up in a special ‘junior zoo-keeper’  T-shirt, feeding the otters and the penguins and generally get a behind-the-scenes look at the life of a zoo keeper.

Boys Feeding The Otters

Boys Feeding The Otters

Every time we’ve been to the zoo in the past, it has been a race around the enclosures to see who could get to the shop first. We routinely spend more time in the shop than actually looking at wherever it is we’ve gone for the day. But this time – magic! Mark, our guide for the day, led the boys around, helped them prepare stuffed rubber ‘kongs’ for the monkeys, complete with mealy worms that Son1 refused to have anything to do with and explained all about the animals we saw along the way. The boys were fascinated and never lost focus; a miracle!

He showed them poison frogs being bred in a back-room, baby lemurs, talked to them about the red pandas and helped them to feed the Asian otters and, the boys’ favourites, the Humbolt penguins. They learned so much in a morning and were happy to chat away to Mark, even though they don’t generally do strangers.

At the end, Mark told me that he was always amazed at the number of zoology students who had Asperger’s – they had, he said, the equivalent of ‘green fingers’ with animals. Son1 is now determined to study zoology and has decided not to mess around in Science anymore. I’m sure his teacher will be most relieved.

Holiday 3: Here

Holiday 1 Here

Special Needs Mum.. on holiday 1

It’s that time again.. the long (3 weeks in our case) Easter break. We took advantage last week of finishing a week earlier than state schools by heading down to Cornwall to stay in a beautiful lodge at a country club, before the price went up.

The boys refused to travel without extra pillows, soft toys, blankies, laptops etc, which made our car full to bursting point, but, once wedged in, off we set. We arrived a mere four hours later with only one incident during lunch at McDonalds when Son2 peeled off all the monopoly stickers while Son1 was in the toilets causing trembly lips and watery eyes and a promise to visit McDonalds again during the week (something to look forward to).

On arrival, the children were delighted to find the lodge had a jacuzzi bath and that was their evening entertainment set. Instructed to only use enough bubble bath to wash themselves with, I left them to it while I went to unpack. I know, I know, although they are 9 & 11, they do have Asperger’s and perhaps I should have sat with them, but they were just across the hallway and I could hear them twittering and giggling away. Some time later I also heard a retching sound and dashed in to find Son1 standing, covered in so much froth he looked like bubble man with a bubble top hat, arms outstretched and wailing that he had swallowed some bubbles and thrown up. In the jacuzzi. OMG! How long had we been there?! They had totally ignored instructions and tipped half a bottle full of bubble bath into the already foaming jets. Once Son1 was hosed off in the shower, hubby and I then had the task of cleaning vomit out of the bath (thankfully the jets had been off).  Happy Holidays! More follows here.

Meridian TV Special Needs update

This is an update on the Meridian TV items aired last week. There was so far been around 150 posts from parents, almost all who feel they have been let down by their LEAs. Meridian’s Christine Alsford writes at http://blogs.itvlocal.com/Meridian/2009/02/11/struggling-with-special-needs/

“We are planning a follow-up piece based around teenagers for later this week. So don’t forget to tune in – we’ll be posting the report on the website too. We are persevering with this because so many of you are telling us how worried you are about provision at secondary level, and voicing your concerns about children who have been excluded and are going to end up with no qualifications and an uncertain future. But we also want to try and put together a whole board of photos of as many people as possible who have contacted us about their situation. This is to try and show the full scale of the problem and the sheer number of people who have contacted us. Please can as many of you as possible e-mail to us either a scanned picture of yourself and your child with special educational needs or just of your child. Please be aware that these will be used in a forthcoming broadcast and on the web so you should be happy for you child’s image to be transmitted. Please label them carefully –we will not be using surnames, and we won’t be saying what area they come from. Please just give their age, their learning difficulty and Christian name. The e-mail address to send them to is specialneeds@itv.com Many Thanks -Christine Alsford”

*Update note – Meridian are updating their website so this is not available at the moment

Diary of a Special Needs Mum Pt2

Despite the hassle of the average pre-school morning, I always look forward to picking up my children after a hard day at school. That is, until I actually pick them up.

Waiting for them to emerge after prep, Son1 appears, flings his backpack at me and tries to get his skateboard, which is muddy, into the back seat of the car.  He flings himself after the skateboard, ignoring my protests.

“Where’s my snack?” he says, by way of a hello. That is all he says, plugging himself into his MP3 player. I resume the wait, for Son2. And wait. And wait.

“Did your brother do prep?” I enquire of Son1.

“Wot?” responds my eldest, removing an earphone. “No. He did swimming.”

Oh. My. God. The swimming pool is outdoors. Son2 has Reynaud’s, which was why, that very morning he’d decided to go to school on a mild day with wooly hat, gloves and scarf on. No coat though. In fact he was in the car before he realised he wanted these items and when I said we would be late if he went back, he’d screamed ‘I’ve got Reynaud’s you b***ch!’ at me. He is nine. Needless to say I took him back into the house, late or not, for a good talking to whereupon he found the things he wanted anyway.

So swimming on an Autumn afternoon, in the outdoor pool. Could be quite pleasant, you might think. Well, it might be, unless you’re the poor sap stood waiting for him to have a very long, hot shower afterwards, to warm up, before he finds his kit, puts it in his PE bag, finds his backpack and shleps all the way up to the car park.

“Shall I go and tell him to hurry up?” asks Son1, amazingly helpful.

“No, I’ll lose you both.” I answer. Nonetheless, Son1 is off on a mission, bolting from the car and disappearing into the school estate. By this time, everyone else has come out and left, some with parents, some in taxis. There is a delicious dinner smell coming from the Refectory where the boarders are about to sit down to their evening meal.

More time passes. Twenty minutes, in fact. Son2 eventually arrives, with luggage, which he drops at my feet. “Where’s my snack?” he asks, obviously a familiar greeting in our family.

No Son1. Son2 offers to go and look for him.

“NO!” I shout, feeling like we’re in an episode of the Chuckle Brothers. Son1 appears several minutes later saying he can’t find his brother, who is now sitting in the car, plugged into his own ipod.

It’s ten to six. Finally we set off for home, where I have earlier prepared Bolognese for dinner.

Forty-five minutes later, I have persuaded everyone to come to the table, except husband, who is still putting in long hours to pay for school fees for the son not yet statemented (That’s another story).

Half-way through dinner Son2 shouts, “This has meat in it. I told you I was a vegetarian! You’re so stupid!” Clearly he didn’t notice during the first five mouthfuls that Bolognese usually consists of meat.

“But yesterday, I made Cauliflower Cheese and you said you didn’t like that either!” I reply, “If you’re going to be vegetarian, you have to at least eat vegetables.”

“I don’t like Cauliflower. Why do you always spoil everything I try to do? You’re mean. I hate you!” he says and carries on eating anyway.

Later, Son2 must do his homework as he didn’t do prep at school. This is a nightmare, as anyone with children like ours will attest. We get, ‘You write it for me?’, ‘It’s too hard’, ‘I can’t write’ and the inevitable ‘Who invented homework anyway?’

My husband is home now and he is rapidly losing the will to live as he tries to help, telling his youngest that if he can’t do homework at home, then he must do prep, not swimming. Son2 throws himself on the floor before we come to a compromise that if he writes it, we will dictate it. This he can just about manage, though we have to spell every word and if we go too fast, he shrieks at one of us.

I leave father and son to it and go to supervise Son1’s bedtime ablutions. We have bought him a High School Musical toothbrush that plays two minutes of music so he know how long to clean his teeth for. It’s a fantastic idea and my son’s teeth are still recovering from the shock of being cleaned properly for the first time since he started doing it himself.

“Mummy, can I do free-running, you know where you jump across buildings?” he asks.

I look at my son in wonder, “Darling, you just told me that you hurt yourself falling off a bench you were sitting on. Your whole life is like free-running.”

And his isn’t the only one. My husband and I often feel like we’re hurtling at great speed from one precarious place to another trying to negotiate the obstacles of our sons’ special needs that make them exasperating, though never less than lovable. I keep telling myself that one about God not giving you more than you can bear, but sometimes I seriously wonder if he got me mixed up with someone else.

However, when they’re in bed, finally asleep, they look just like beautiful angels and you know that, despite everything, you wouldn’t swap them for the world. And then I go and have a large glass of wine.

<Diary part 1

Diary of a Special Needs Mum Pt 1

I was talking to the head of the Juniors Department at my sons’ school the other day. She noted that parents of children without special needs had no idea how tough it was for parents who did have children who are not so-called “normal”. I hadn’t considered this particularly before, even though both my boys have Asperger’s Syndrome, so I lay before you a precis of a couple of my days and you can make your own minds up. Here is part one, between six am and 7.30am on a school day.

Friday morning, wake up at six. Lovely husband brings breakfast for everyone; the high point of my day. Neither boy wants to get out of bed. We need to leave by 7:30 to get to their special school twenty miles away on time. Son 1 (10) eats his breakfast and hides under the covers. Son 2 (8), complains that he doesn’t like his breakfast and asks for something we don’t have and nothing else will do. Tantrum ensues. Eventually settles for toast after setting everyone’s nerves on edge with ten minutes of whining that he never gets what he wants. Special Needs Mum (ie, me) heads for shower at 6.25 as Son 2 disappears into his room and shuts the door.

Ten minutes later, Son 1, who insists on having a fan blowing full blast in his face all night or he can’t sleep, drags himself out of bed and goes into his brother’s room to bother him. More whining and some screaming ensues. SNM is forced to stop getting ready and intervene. Is ignored. Count Son 1, following technique learned from 1-2-3 Magic book. Son 1 reluctantly disengages from attack on Son 2 and slinks back to his bedroom on the verge of ‘3’. Notices that Son 2 is sitting, naked, playing Lego. He had begun to get dressed, but got distracted. SNM puts his clothes next to him and tells him that Lego time is finished and he must now get dressed, then returns to drying hair, nerves frayed.

7am: SNM gets snacks and drinks ready for boys’ bags. Son 1 is dressed and sitting watching Disney Channel. SNM turns off TV because it isn’t allowed in the morning, something Son 1 knows very well but doesn’t stop him from complaining and trying to switch it back on again. Is sent to room to put his tie on.

7.15: Son 2 still playing Lego so SNM goes in and sits with him, handing him each item of clothing in turn until he is dressed. Son 1 makes an appearance in doorway to resume tormenting, sees SNM and retreats hastily. SNM realises Son 1 has stolen Son 2’s tie. Son 2 is incensed, pushes past SNM and leaps on his brother, trying to rip the tie from around his neck. SNM peels Son 2’s fingers from around Son 1’s neck and demands the return of the tie.

Son 1 whines, “But then I won’t have one,” completely missing the point that it isn’t his in the first place. Son 1’s tie is finally located, stuffed into a small pocket of his school bag, along with a letter from school saying they need some money for an author’s visit. Today.

SNM rummages in purse to find money, has none, catches husband on way out who has just enough and leaves for work with no cash left in wallet. SNM tells boys to clean their teeth and then searches, unsuccessfully for purses to put the money in. Both boys’ purses are missing.

Screams heard from bathroom. Five minutes to go before leaving time. Son 2 is weeping because Son 1 kicked him. Son 1 says it was because Son 2 poked him up the bum and called him fat (he isn’t).

SNM feels final nerve-ending tightening to breaking point. Takes deep breath, orders sons downstairs to put shoes on.

Son 1 can’t find his shoes. Son 2’s are under the sofa, covered in mud. SNJ snatches them away and rubs them over with a damp cloth. Son 1 finds his shoes, also muddy, puts them on and runs upstairs to get his bag, leaving trails of dried mud on the carpet.

SNM’s eye begins to twitch.

7.35, out to car, only five minutes late. Son 2 stops short of getting in, declaring he needs to find his Nintendo DS for the journey and refuses to get in the car until he has it, disappearing back into the house. Goes upstairs in shoes, leaving damp muddy marks on carpet from the bits SNM missed when rubbing them over. Five minutes later, re-emerges and screams at Son 1, who has taken the front seat when it’s apparently not his turn. SNM reminds Son 2 it is, in fact, Son 1’s turn who says helpfully, “Yeah, idiot, see, it IS my turn.” Son 2 tried to hit him but SNM catches his arm mid-air.

Time: 7:42. By now, traffic has built up on the motorway slip road that wouldn’t be there if we’d left at 7.30. Join queue of traffic as Son 2 turns on DS, with jingly jangly noise grating around SNM’s brain. But at least we’re on our way and that’s something to be grateful for.

Now, those mums with “normal” children would probably say, pursed of lip, that SNM doesn’t have control over her children, or that their own children wouldn’t dare to behave like that or perhaps, even suggest that SMN’s parenting skills are lacking.

I say just getting my boys into the car every day for their trek to school is a triumph. When my younger son was diagnosed with Asperger’s, one mum said to me “Well he isn’t that bad, is he? It’s not as if he’s severely autistic or anything.” To her, because my son didn’t fit her “autistic stereotype”, we must be just exaggerating or trying to pass off bad behaviour as a medical condition to excuse our bad parenting. Perhaps she’d like to swap her morning routine with me and then see how smug she is. But I know that my tale above will be familiar to thousands of other parents of children with special needs and for others, it’s probably not half as bad as their mornings. But you know, my sons’ teacher is right. Parents of neuro-typical children are often quick to condemn when they see children behaving badly, without realising they have a hidden disability such as Asperger’s. Perhaps if they walked in the shoes of a special needs parent for even one morning, they might think differently. And would I swap my children for theirs? Actually, no I wouldn’t because though they can be tough to deal with, they’re mine and to me, despite everything, they’re perfect.

Part two will follow, when I summon the energy to do it. Thanks for reading.

Update: Find Part 2 here