Who else dreads annual reviews?

When we first started out, I thought annual reviews were about making sure our children were progressing and getting the support they needed. After a few reviews, I learned to be overly cautious if not downright scared of them.

Our first primary school invited the LA which I later learned was only done when the school thought they had a problem. Their problem was we were funded for ABA (Applied Behaviour Analysis) following two tribunals. The  head teacher didn’t want us in her school from the start. A few years and a few annual reviews later on a day which is etched on my memory for ever, we had three annual reviews all in a row! Yes, all three boys, one after each other. I won’t go into details but the  school was determined to get us out. We had only just won our third tribunal for our third son’s ABA funding and we were not prepared to lose it.

We did leave that school a few weeks later and took our funding with us to a fabulous, supportive school closer to home and closer to our hearts. They did us a favour in many ways in kicking us out but the anxiety and stress caused by that move affected me badly.

From then onwards, annual reviews at the new school were totally supportive. We discussed the boys’ progress, we talked about how best to help them. I stopped dreading them.

Until a few more years later, when our fourth son started school and we asked for him to repeat a year, like his three older brothers had before him.  We were told in no uncertain terms by the LA that he couldn’t stay down and the fact that we had asked was obviously proof to them that his ABA programme wasn’t working. They wanted to pull funding on that basis alone.  That annual review involved so many reports and assessments just to prove that it was working, and working really well. I learned to be very wary of asking for any changes after that.

Fast forward to a transition review at age 16 for the twins. The LA turned up unannounced in May and declared no funding for the sixth form where they were but that they needed to move to a local college a few months later. It was a blanket policy to move all children back into the borough which has barely any special needs provision within it. It was another battle which we won but it caused so much stress while we waited to hear if we could keep them at their current, appropriate placement. We never told the boys, it would have made them so anxious and worried.

Finally today, another transition annual review for both twins. What a fabulous, supportive day.  Their college believe in conducting comprehensive reviews at which everyone contributes and we discuss openly about all their needs. A really positive experience.

Do I have any advice? Only … always be on your guard, you never know who may turn up unannounced and try to wreck your world. Always have all the reports you might possibly need. Always make sure your parents’ statement outlines and enforces what your child needs. Keep one step ahead and think about what you might say if the worst happens and they try to remove your child’s provision.

I am always exhausted after every annual review and we have four each year.  I get stressed in the weeks leading up to them, these days unnecessarily so, but I suppose it is a learnt behaviour now for me to worry about what might happen.  The relief when we get through another one successfully is never to be underestimated.

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Talking to your child about their autism

To be really honest, I have no great advice on this one. It’s so personal. Every child’s autism is different and the way you tell them or don’t need to tell them about their autism is different.
 
My book was published three years ago. The title has the word autism in it. I needed to be sure the boys knew they had it or were it depending on how you like to describe it. I tend to say they ‘have autism’ but may also say ‘are autistic’, the terminology to me is interchangeaable. The boys prefer ‘with autism’ so I will respect their views.
Either way, I was conscious that someone might ask them about their autism and I didn’t want their realisation to come from a stranger and not from me or someone they trust.
I avoided talking about autism with the boys for many years. I don’t think it defines them. It is who they are and autism is part of them but there is so much more about them to focus on.
It’s a bit different in our household. All four boys have autism. To them, it’s ‘normal’. If you grow up in a family where everyone has autism, autism is the ‘new black’ . I do remember one of the older boys asking when Marcus would start having tutors. He was only about one at the time and had not been diagnosed. To them, having tutors was what everyone had, so when at two, he was diagnosed and did have his own tutors at home, that was just the norm.
The twins never questioned having one to one tutors at school. They adored most of them and were glad to have a ‘friend’ to go to school with. Our middle son did question it at seven. ‘Why do I have a babysitter at school?’ he asked. ‘Why do I need one?’ Questions the older boys had never asked and which threw me. I tried to explain but it was not easy and he was angry. He didn’t want ‘autism’ if it meant he was different from his classmates and needed extra help. We managed to transfer him at age eight to an amazing school for boys with specific learning difficulties ( there are boys with high functioning autism there too but mainly other needs like dyslexia) but crucially smaller classes and specialist teachers so he no longer needed one to one and was just like every other boy again.
Back to telling the older boys. Three years ago I asked Benjamin if he though he was different in any way from other boys. He thought for a while and replied ‘ yes, I am good at drumming.’ Great answer. Yes, he is very good at drumming and most people aren’t. I think I tried to explain that everyone is different and we all have things we are good at but things we are not as good at as others might be so it all evens out. I explained that he had difficulty learning to talk and so we had tutors for him from when he was just three to help him learn to talk.
Mostly, I explain that their autism has meant they needed a great deal of help to be able to learn to talk and how useful being able to speak is. Of course, they don’t remember being non verbal or pre verbal.
They have absorbed the fact that they have autism slowly over time, rather than being told in a defining moment in time. When I asked Thomas a few years ago about autism, he said he had it but it was no big deal, he was an artist. That was the important fact.
How wise my boys are. To Benjamin, his musical gift defines him and to Thomas, his artistic talent and his running define him. We don’t dwell on the ‘A’ word as we often call it in our house.
I don’t think I am qualified to advise anyone on how to tell their own child they have autism. I can only write about how I talk about it to my four very different boys.
I have not sold autism to my boys as a super power. The struggle for them as small children was too enormous for it to ever be called that. Their struggles continue.
Their power is that they have learnt to talk, to communicate when we didn’t know if they ever would. Their power is that they respect themselves and are proud of themselves.
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Work creation schemes for small businesses.

The older boys (20) have recently done some work experience placements in small local businesses with mostly one to one support from their excellent college, Ambitious about Autism.  They really enjoyed their few weeks. Their placements were chosen with their interests in mind. Benjamin worked in a record shop selling old vinyl and Thomas worked in a local gym which he uses on a regular basis so he knows everyone there.

One of the aspects of his autism means Thomas is unable to properly organise himself because of processing issues, he really isn’t up to organising day to day gym activities. He needed support to work within that environment.

I have two separate distinct observations from their work experience which has led me to consider their future work prospects.

Thomas has a non verbal IQ which is way higher than his verbal IQ, known as a spiky profile.  He is somewhere around the 97 percentile non verbally while his spoken language and understanding of language is around the third centile.  A huge chasm between the two means he has great difficulty in understanding and following complex instructions.

When people meet him, they perhaps think he just talks a little differently. He has great social skills and is very friendly and appropriate in his interactions with others but he cannot hold complicated conversations. Ask him a fact about an athlete and he will recount numerous statistics. Ask him what he thinks about Brexit and he will just tell you he is bored hearing about it. So are many people, but he doesn’t actually understand situations outside his own experience, like Brexit.

My first point is that he may be destined to do a repetitive job which offers him little stimulation. As a teenager, I stacked shelves in a big high street chemist but I had a range of intellectual stimulation outside this job. I could go to the theatre, read books, read newspapers, discuss the meaning of life as you do as a young person. I could get my stimulation elsewhere. Thomas needs mental stimulation from his everyday activities which work will one day be.

My second point is pay. He could volunteer his services for free and probably secure a position that he enjoys that way but why should he not earn a wage?

He is unlikely to get a job and earn a wage when unemployment is high. Every job he pursues, like working in a sports shop, is likely to be filled by sports graduates, those who can help customers try on and select new running shoes, who can put in stock orders. Thomas can count stock, he is hard working and enthusiastic, he can greet customers but he still needs help himself to choose a new pair of running shoes, he certainly couldn’t advise others.  The problem is, that Thomas will not be able to meet the minimum requirements for most of the jobs offered and many businesses will not be able to afford the cost of the support which Thomas needs.

The Equality Act means that any employer may have to pay him the same as they would pay a sports graduate capable of doing much more than he can, so it’s unlikely he will get the job.

But the jobs that would suit him aren’t out there.  Thomas’ employment prospects may be voluntary work or no work.

It would be so much better if there was an option for a scheme that contributed to small businesses and workplaces so that they could claim a subsidy towards paying the minimum wage and supporting a young person such as Thomas.

Fortunately, for Thomas, there may be other avenues open to him. As a sports model? or as a freelance illustrator? But someone (it will be me) will need to source the work for him and negotiate the contracts.

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Is there such a thing as a cure for autism?

From time to time,  you read a blog or an article or even a book about how someone ‘cured’ their child’s autism. Is that really possible? Can you ever separate autism from the person? From who that person intrinsically is?

Although I am wary of twitter, I continue to read tweets and posts from autistic adults as I do want to understand more about autism and how it affects people on a personal level. For some in the neurodiverse community, autism is sometimes seen as a gift, an instrinsic part of who that person is, their very personality, so how can that be removed?

I think one of the main grievances from the more able autism community, by able I mean in most cases, more verbal, is that we parents are seeking an outright cure for all types of autism. For those whose children have what we tend to call ‘severe’ autism – minimal or no language, self injurious behaviour, who will need 24/7 care for the rest of their lives, many parents will seek a partial ‘cure’ or a lessening of their child’s autism. Not a removal of their personality but removing that which causes them distress.

We do this out of love.

We parents will do everything we can for our children, to improve their day to day lives. We dedicate our own lives to looking after them and enabling them to reach their full potential.

I personally don’t believe that there is such a thing as a cure but there are certainly ways to help a child develop essential skills to make their lives happier.

I won’t write about the benefits of ABA (Applied Behaviour Analysis) in this post. Those who know me and know my boys already know that we did ABA in various forms for 16 years and that it was the one most vital thing we did for our boys.

But I won’t say it was a cure. It was a way of teaching them the same skills that other chidren without autism learn with very little additional help. Communication, learning to talk and to understand other’s speech. Learning to cross a road safely, learning to dress, so many vital life skills.

Some children have physical issues which impact on their autism. If a child is in constant pain, perhaps from a gastointestinal problem such as impacted constipation, that pain will inhibit their learning. When the pain is removed by curing the constipation, their child may experience a lessening of their autism. Those parents may then speak of their child’s autism being cured.

I believe all we can do is to maximise a child’s potential. Not sit back and just accept their autism as defining who they are and who they will be but actively helping them to achieve.

Sometimes, I almost feel bad about writing about how well my boys have done. From non verbal and having a diagnosis of classic autism before the ages of three to happy, talented, semi independent young men. I want to inspire but I don’t want to make any promises that if people do what we did, then their children will progress in the way that ours have.

I know I have done everything I could do to help them on their way but I also know that  genetics play a large part in who they are. My younger two sons are more able than my older two. Why is that? They have had exactly the same family environment, same schools, even the same therapists but their autism affects them differently to their older brothers.

It’s not because I learnt more and did it differently, it’s just how it is, for whatever reasons. Possibly physiological, no one really knows and I don’t profess to having the answers either, although I can’t begin to count how often and how many times I have been asked why all my boys have autism.

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Carer’s Allowance – UK versus NZ

In the UK, if you care for over 35 hours a week for a child or an adult who receives a disability benefit you are entitled to claim Carer’s Allowance of £66.15 a week.  If you earn over £123 a week, then you may not be eligible or you may be taxed on the allowance.

If two of you i.e. parents care for the same person for over 35 hours a week each, then only one of you can claim the benefit. Similiarly, I have four boys, all eligible for disability benefits but I can only claim one carer’s allowance despite looking after all four of them for over 35 hours a week each.

£66.15 a week divided by four boys on an hourly rate? Is that what I am actually worth?

How much is the state saving in caring costs by expecting family members to do most of the care for their relatives for pennies per hour?  Many of whom who are unable to work because they are caring for a family member full time?

My older boys used to get eight hours a week direct payments for carers to take them out. The social worker on her annual visit last year cut that to six hours. When I said that I didn’t feel bad about claiming eight hours as it would cost much more if they were to live fully supported within the community ie no longer at home, she said that some living  in community housing only get six hours too. But how much does their accommodation , admin and wrap around care cost? A lot more than eight hours does – actually only six now.

There was an article in the NZ (New Zealand) Herald in July which seems to have come under a low radar in this country. By which I mean, I have seen absolutely no mention of it anywhere. Why is this?

NZ are bringing in changes which mean that family members looking after spouses or children under 18 will be paid as carers. Paid a living wage.

From an article in the NZ Herald – 7 July 2019

Family carers are welcoming a Government announcement to pay partners and spouses who look after ill family members up to $25.50 an hour. People will be able to be paid for care they are already providing … [and] not be struggling financially to provide care that the state would have paid if it had been someone other than a family member.

He said his family had the fortune of having income, but today’s announcement would be especially beneficial for those who had given up incomes to look after spouses or children under 18.

We would never do it, but can you imagine if every parent in this country announced on the same day that they could no longer look after their child at home and that the state would have to pay for and provide all the care those children need?

How much would that care cost? A damn sight more than £66.15 per child a week.

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