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?

Common sense prevails with more time to test the SEN reform proposals

Minister, Edward Timpson at the Select Committee today

Education Minister, Edward Timpson, has, it seems, listened to the concerns that so many, including Special Needs Jungle, have voiced – that the pace of SEN reform is too fast and more time needs to be given to learn from the pathfinder trials. At the Education SEN select committee on Tuesday, he announced the extension of the Pathfinders for a further 18 months to run through to September 2014. This is six months after the the bill was originally slated to pass into law and I, for one, welcome it. He did, initially, say he still wanted the bill to be passed by the original date, however.

The Minister said, “The overwhelming view is that we are moving in the right direction, but we want to get this right and if that means listening for a little longer, then I am prepared to do that.

In response to concerns from some that the new bill will remove rights that are already existing, Mr Timpson offered assurances that families’ current protections under the existing statementing system are intended to be carried through to the new system. This includes the right to request an assessment, which will also include parents, GPs and Health Visitors. Earlier, parent representatives at the meeting had highlighted the issue that the wording in the current bill did not make it clear that local authorities still had a duty to respond to a request for an assessment within a specified time period. Mr Timpson did not give a clear answer about imposing statutory time scales to ensure that local authorities could not drag out an assessment.

Mr Timpson said, “In no way shape or form is there an intention to water down the protections that parents currently have and if that requires some nuances to the drafting in the clauses that are currently before the committee, then I’m happy to go back and have a closer look at.”

Mr Timpson was at pains to point out that the purpose of the reforms was not to save money  – in fact, he said, spending on SEN had increased from £2.7 billions  in 2004/5 to £5.7 billions in 2012/11

The Minister also said that the Department for Education is working closely with the Department of Health to ensure health play a greater part in a new SEN and disability system. This was in response to concerns that in the draft bill at the moment, only local authorities have a duty to provide the therapies and support specified in a plan.

Regarding the health issue, Sharon Smith of Hampshire Parent Voice, part of the SE7 pathfinder, illustrated it using personal concerns relating to a duty on health to provide the specified therapy and care. She cited her daughter, who has Down’s Syndrome, needing speech and language therapy and if this came under health provision and wasn’t forthcoming, there would be no way to appeal or ask for a judicial review.

Mr Timpson said they will be looking at the NHS mandate and at redress in the NHS constitution, as well as ways to forge links between Joint Strategic Needs Assessments and Health and Wellbeing Boards.

Extension of pathfinders

Mr Timpson explained his decision to extend the pathfinders from March next year to September 2014 saying that in some areas of the trials there was already a grounding of good evidence (not quite sure which ones he means) but in other areas they still need more evidence- for example personal budgets- for the right regulations and a new Code of Practice to be formulated. By Next March, the bill still would not be on the statue books and so they would use that gap to learn from the pathfinders.

When pressed on the question of when the legislation would be introduced if the pathfinders were going to continue until September 2014, the Minister said, “I want to make sure we get legislation right. If that means a short delay in introduction of bill, so be it. But it is the parliamentary authorities who have the final say in what legislation is going to be introduced, when.

Which is very handy, it seems to me.

Mediation

When challenged about the proposal for mediation to be compulsory, the Minister said that there would be no in-built delay as a consequence of there being mediation, in that the two month period in which an appeal can be triggered would not be affected, as they anticipate mediation to take place within the first month. His answer to the question of capacity of mediation services was somewhat confusing, however. It also seems to imply that parents can still appeal in the same two month window as they can now with no delay. This needs further clarification.

Transitioning to the new system & legal status

The parent and service user panel

Questions were raised about how to transition from the current system to the new one for those children who already had statements. Mr Timpson said he wanted to avoid ‘blind panic’ and so the transition needed to be systematically and carefully introduced. He wanted to assure parents that the current elements of their child’s statement would continue in an EHCP with the same legal standing and EHCPs would have the same legal status as statements.  All current rights that parents have, he said, would be protected through the legislation.

Addressing worries that there is only a legal duty for the education part of an EHCP to be delivered, the Minister said that joint commissioning would give a duty to health and social care to cooperate and work with education and parents. I’m not sure I’m convinced about this, myself, and I’m sure many of my colleagues in the pathfinders will feel the same way.

For a transition from a statement to an EHCP, he said there would be obvious points – for example at an annual review or post 16 instead of moving to an LDA they would transition to an EHCP, but Mr Timpson said it was something they would need to think very carefully about. He didn’t think there is a single cut off for all children, but they would use the pathfinders to provide evidence on the best way forward.

With the all-encompassing approach of an EHCP, questions have been raised about what happens if a young person is out of education but still requires input from health and/or social care and Mr Timpson appeared to  indicate that local authorities would have a duty (a legal duty??) to try to get these young people back into education. He acknowledged there were difficulties when a young person was in higher education as they had their own structures but did believe that it was important to bring apprenticeships under the auspices of an EHCP.

Additionally, if a young person takes a year out at, for example 18, they will have a right to ‘reactivate’ an EHCP if they come back into education and if it if decided they no longer meet criteria, they will have the right, themselves, to register an appeal.

There has been talk of redefining Special Educational Needs but the Minister said the current definition was the one that was intended to be carried through, but as it was something they wanted to get right, they would continue to carefully consider the issue.

Terminology in the draft bill has been called into question and Mr Timpson said that the term ‘set out’ was intended to be the same as the existing ‘specify’ and it was not a  way of trying to realign what may or may not be available. Which does beg the question, if that’s what is meant, maybe they should have avoided controversy and said that to start off with.

Code of Practice

With the reforms comes a need for a new SEN Code of Practice and many believe that this should undergo the scrutiny of parliament. Mr Timpson said that he believed a new CoP should be a ‘living organic document’ that is concise and can be updated in a more natural way than going to parliament every time a change needs to be made. However, although he seemed on the one hand to be saying there would not be a consultation, he then said that there would be close involvement from parent-carer forums and a need to make sure they play a part. He did say that he was still listening to views that there should be a different route.

A new Code of Practice, Mr Timpson said, would be a document that parents can easily access and that would be clear what their rights are and what the process is for their child’s journey. It would include information about the EHCP, Local Offer and Personal Budgets but he didn’t want it to be labyrinthine. It must be effective, he said and that was why the pathfinders were important in informing that.

Local Offer

The Minister said that regarding the Local Offer, it was not their intention that it would be a duty for the local authority to provide the content of their local offer. However, he then said a key area that it should address is that on the face of the local offer should be information on how a young person could seek redress if they don’t receive the services laid out in it. I must admit I’m a bit confused here.

In the previous committee hearing, the experts present said they believed that there should be a national framework of minimum standards for a Local Offer. In response, the minister said that what was clear is that they want a Local Offer to genuinely reflect what parents and young people want that is local to them with strong local accountability. He said that there would be, in the new CoP, key areas the Local Offer should cover but he didn’t want to be prescriptive.

He implied that it would be up to parents to confront a local authority if what was available to them was not of the same standard as that in another authority.

In my opinion, the average parent of a special needs child doesn’t have the time or energy to go about researching what is available in other LAs and start demanding it from their own. This is why a national minimum standard is a good idea, Mr T. You cannot expect parents to police the Local Authority and its Local Offer – it isn’t reasonable or fair.

The Minister said a national framework was not currently the intention, but they would give it more consideration and I hope that they do for the very reason I have just given.

Congrats to the parents from Hampshire and the young people who made such good points clearly and concisely in their part of the proceedings. I agreed with the points they made completely and they did a really good job!

You can view the live video feed from the Select Committee on the Parliament UK website.

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..

Mother Needs Help For Self-Harming Son

I have just been contacted through this site by Sharon, a mother from Kent, whose son has been excluded from school following incidents of self-harming.

She writes, “My ADHD, ASD, Dyslexic, self-harming son, has just been excluded from school, because they don’t think Luke trying to strangle himself in class or him regularly saying he wants to kill himself, is a good role model for the other pupils. Their answer, discriminate (against) Luke for his disability. He needs support, not rejection and that’s all this exclusion is to him, rejection!”

This is apparently the second time Luke’s school has excluded him. His mother, Sharon, believes it is not Luke’s fault but it is because the staff in his mainstream school are not trained to deal with ADHD or Autistic Spectrum children.

Sharon is at her wits end. She says, among other self-harming incidents, her son has also tried to hang himself in the school’s P.E. cupboard. I have recommended that she contact SOS!SEN. Luke has been refused a Statutory Assessment Kent LEA and his parents have appealed to the SENDIST tribunal, which will be heard later this year.

Sharon says, “It looks like Luke will not have a secondary school to go to this year. The tribunal is only for a Statutory Assessment, then we need to go through the whole process yet again for a statement! We have already been to CAMHS for over a year now. No counselling, he was put on a waiting list for a ASD assessment, but there was a 13 month waiting list for that. The last time we went to CAMHS a new Dr. saw Luke and we now have a diagnosis of ADHD & ASD tendencies. Were awaiting a dyslexia test, and counselling for the self harming, which is quite evident to everyone, but they chose to ignore it, or put it down to bad parenting!”

Sharon says that Luke’s primary school failed to get him the help he needed and his problems are now worse as a result. I don’t know all the details of Luke’s case but it certainly seems to be an impossible situation to be in. However, it isn’t sadly, unique. Why is it that children in severe need of help with psychological problems are so often failed by those professionals around them?

I send my best wishes to Sharon and hope she manages to get the education and counselling for Luke that he deserves. If anyone reading this can offer free legal or medical advice to sharon, please contact me at info@specialneedsjungle.co.uk or make a comment below. Thank 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

ASD child? Are you getting what you’re entitled to?

If you are the parent of a child with an Autistic Spectrum Disorder, you don’t need me to tell you how difficult a ‘normal’ lifestyle can be.

Not only will your child have some level of social and communication difficulties, they may well also need speech and language therapy or regular occupational therapy that unless you pay for privately, you face a long NHS wait (in the UK) or it may not be available at all. Going for days out maybe out of the question because of long queues or simply the stress of facing the world and other people maybe too much.

You may even need to get hold of specialist equipment such as writing slopes, special types of pen or even a laptop that would make your child’s life so much easier but it all costs money.

If your child has a disability that affects their life so that they need more help than an average child of their age, you may be able to claim Disability Living Allowance. It is made up of two components, The Care component and the Mobility component. You can call the DWP for a form, or you can now apply for it online. It’s a tricky form to fill out, because it’s not really set out for children with ASD, but there is advice on the NAS website on how to go about it.

If you are refused, you can call up and ask for a reconsideration of the case if you think what you have said has been misinterpreted, or, failing that, you can appeal. We get the middle rate of care and the lower mobility rate for both our Asperger’s sons, and it’s worth more than £250 a month each. This helps towards the costs of specialist education, which includes OT and SLT that we would otherwise find difficult to afford.

Legoland, thanks to their disability scheme

Legoland, thanks to their disability scheme

If your child has a Statement of Special Educational Needs they may be able to get a laptop or other IT equipment from the LEA. Ask your school to arrange an IT assessment. My younger son has an LEA laptop that he makes really good use of.

If your child qualifies for DLA and you are their main carer, and you don’t earn over £90 a week, you can claim Carer’s Allowance, which is worth around £53 a week. Not a lot, but if their condition prevents you from earning money through working, (eg, you can’t leave them with childminders after school or in holidays because of their condition)  then you also can’t claim job-seeker’s allowance, so every little helps.

If your child gets DLA, you are also eligible for a cinema card. This means that one person/carer accompanying your child to the cinema can get in free. It costs £5.50 and is valid for a year. You get a photocard with the child’s details so it doesn’t have to be the same person taking them each time.

Many children with ASD love going to theme parks, but cannot stand to queue which means that they rarely get to go. However, many theme parks have special passes or stamps which mean you can use the exit as an entrance, thus avoiding the queue altogether. We did this and got around Legoland’s rides so quickly, we were able to leave by 2pm having been on everything and with barely any stress. Other attractions also have reduced rates for the disabled or free entry for carers. Check their websites or call them up before you go.

The above are in addition to the usual child and work related tax credits which are availabe to anyone who qualifies. More information on what you may be able to claim can be found at the Disability Alliance website



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.

Autism Costs UK economy £28 billion

A new study into the economic impact of autism spectrum disorders in the UK has shown that the total estimated cost is £28 billion each year. That averages out at £500 each year for every man, woman and child in the country.

The study, published in this month’s edition of the journal, Autism, includes estimates of the impact on the economy through lost productivity and says that further improvement in earlier intervention should considered and services across government and society in general should be better coordinated.

It combined data on prevalence, level of intellectual disability and place of residence with average annual costs of services and support, together with the opportunity costs of lost productivity. The costs of supporting children with ASDs were estimated to be £2.7 billion each year. For adults, these costs amount to £25 billion each year. The lifetime cost, after discounting, for someone with ASD and intellectual disability is estimated at approximately £1.23 million, and for someone with ASD without intellectual disability is approximately £0.80 million.

The research was carried out at King’s College London, Institute of Psychiatry, and the London School of Economics. Its authors found that, “At a time when the UK government is emphasising the need for higher rates of economic activity, and in particular is
trying to help people with disabilities and long-term conditions move into paid employment, the high costs of lost productivity stand out. Very few people with autism were in employment, which is hardly surprising given that there was little or no support to get them into work.”

The study points out that the figures only show what was spent or lost and not what ought to be spent. Autism advocates feel this figure should be much more, particularly in the area of early intervention and appropriate education. Such help can ameliorate the effects of the disability for many people with ASD, particularly those at the higher functioning end of the spectrum with Asperger’s Syndrome.

While the authors of this study emphasise that the costs presented do not provide an economic case for early intervention, they do highlight the importance of addressing that question. If early intervention could successfully change some aspects of behaviour that are cost-raising, both in childhood and subsequently, it may allow cost savings to be made and quality of life improvements to be achieved.

The research found that the range of sectors on which autism has an impact shows that there is  a need to ensure coordinated action across different parts of government and society more generally. It also said there was a need for a much better understanding of the cost and cost-effectiveness of various interventions and supports for children and adults to ensure that decision makers have a stronger evidence base when deciding how to allocate resources.

Study: Economic Cost of Autism: Martin Knapp, Renée Romeo and Jennifer Beecham, pub,  Autism http://aut.sagepub.com/cgi/content/abstract/13/3/317

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

The SEN Assessment Form – Yipes!

A few people have mentioned to me how daunting they find the form that comes for you to fill in to apply for a Statutory Assessment for your child. They’re worried they’ll forget something, they won’t phrase what they want to say in the right way, or that they’ll just do it all wrong and blow their chance.

I don’t know how every LEA approaches the application; whether they all send out a form or whether some do it another way. Ours send a form with questions and boxes to write in your answers as a guideline to help parents know what to include. The LEA has made the form in the first place because they do actually want to help find out what a child’s issues are. The problem is, it often makes the task more difficult because some people may think that’s all they can put in, or leave stuff out that needs to be in because there was no obvious place to put it or stop at the end of the box because they think that’s all they’re allowed to write.

I would suggest putting the form to one side, sitting down at your computer or with pen and paper and just writing your child’s story. You, bar no-one, know them the best. You are the one who has agonised over your child’s progress, or lack thereof, you are the one who has more than likely wept over the fact that they don’t fit in or just can’t get to grips with things that other children have no trouble with at all.

Start at the beginning, from the day they were born. Note down any problems with the birth, unusual development, recurrent medical or social problems, how they get on with others and with school work. You will be amazed how much you can write and you’ll probably shed a few more tears as you do it as well.

If you then want to fill in the form, you’ll be able then to pull things out of your narrative to put in the spaces. Or just leave the form out altogether and redraft your narrative making sure you’ve covered all the questions on the form as well as everything else you want to say. This is your chance to put your child’s case. If you’re turned down for assessment you will be able to appeal, but the more relevant information you put in now, the less likely it is that you’ll have to.

Refer to reports your child has had done and send copies of them along as well with your application. Go through the reports you have and pull out the parts that strengthen your case.

For example. “In his assessment on 21/4/06, Dr X remarked that Johnny has great potential but his lack of social skills was likely to adversely affect his learning. Please see report (numbered 7) enclosed with application.”

Then number that report number 7 or whatever number you’ve given it, and enclose it with your application. You could then back this up with remarks teachers have made to you or with comments from Johnny’s year end report, which you will also number and enclose.

If their writing is a problem, send in samples of it. If reading is a problem, write down the level they’re reading at or perhaps that they avoid reading because they find it frustrating. If they are desperately unhappy because they are bullied because of their differences, mention this as well. If their frustration makes them angry and violent or unpredictable or friendless, write this down too.

But my best advice when approaching your application is to tell your child’s story first and foremost. You don’t need to be a world class writer, but do use the spell checker on your computer or get someone else to read it over for you if you’re unsure. Enlist the help of a group such as Parent Partnership if you’re lacking support.

No one knows your child like you do. Others, such as teachers, will have a different and valuable perspective, so speak to them and include what they say in your application. The SENCo will be asked in any event by the LEA to fill in their side of things but speaking to them yourself will inform you of things you may not have known.

Update: I’ve just added a help template under “SEN Assessment Form Part 2