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

Get to Grips with the SEN Code of Practice

When you dive into the world of SEN provision, you will undoubtedly come across a document called the SEN Code of Practice. This is the government document that spells out to schools and LEAs what their duties are regarding special education.

LEAs, under the Education Act “must have regard to” the Code of Practice. For parents, this means that it’s a document that you must get to grips with if your child has special educational needs.

For example, the SEN COP says that when a decision is made about whether to make a statutory assessment there is one critical question:

“7:34 In deciding whether to make a statutory assessment, the critical question is whether there is convincing evidence that, despite the school, with the help of external specialists, taking relevant and purposeful action to meet the child’s learning difficulties, those difficulties remain or have not been remedied sufficiently and may require the LEA to determine the child’s special educational provision. LEAs will need to examine a wide range of evidence. They should consider the school’s assessment of the child’s needs,including the input of other professionals such as educational psychologists and specialist support teachers, and the action the school has taken to meet those needs. LEAs will always wish to see evidence of, and consider the factors associated with, the child’s levels of academic attainment and rate of progress. The additional evidence that authorities should seek and the questions that need to be asked may vary according to the child’s age and the nature of the learning difficulty.”

Note it does not mention that they need to be so many years behind or that if they are above a certain level then they don’t need to be assessed. It is about the child themselves and their progress, rather than where they come on certain scales or test measures. This is particularly true for children with hidden disabilities such as Asperger’s or Dyslexia, who are often very bright, but whose achievement could be significantly higher and more in line with their potential if they got the right help.

Also remember that KS1 tests are teacher assessed and may not be an accurate reflection of what your child is achieving. Teachers have been known to misguidedly inflate actual test scores for a child who has a difficulty with recording answers because they know what the child is capable of verbally. But when you come to apply for assessment, the inflated score actually counts against you because although the Year 2 teacher has made an accurate recording of the child’s natural ability, it is not an accurate reflection of their achievement.

Download the Code of Practice from the Teachernet website. And then read it and use it to help your child get the help they need. This is, I know, easy to say, because it takes time and energy to get through it and if you’re working a long day and dealing with a child with special needs you’re probably short on both those things. But the document is fairly well set out, in sub-headed chunks to help you find what is relevant to you. To help, the relevant section for Statutory Assessment is from page 80, or 87/217 on the pdf document.