16 years of ABA has come to an end.

Our youngest son, Marcus has just finished at mainstream primary school where he has been for the past 5 years with 1:1 ABA support. Prior to that, he started ABA at just 2 years old before he even got an official diagnosis.  So that’s 7 years clocked up for him alone.

His older three brothers all did full time (35 – 40 hrs a week) ABA from their diagnoses. The twins, now aged 18,  started at just three years old.  Their younger brother, Hector, was six months old at the time. Two years later, he was also diagnosed and started ABA too.

For many years , I managed three full time programmes concurrently.  A neat sentence to write which conceals eight very long years of incredibly hard work.

It was hard work for me to manage it all. We had three tribunals to win funding along the way. It was hard to recruit tutors over the years – the hardest bit of any programme. It was hard to have people constantly in our house, in our space and it was hard to find the funding to pay for it all. At times, we had two lodgers living with us to fund it but that show just how much we believed in it.

And, if it was hard work for us, it was equally hard work for our boys who had to learn to speak and to do so many daily activities that they were previously unable to do. Sometimes, simple things like getting dressed could take hours to teach. The boys had to get used to having someone who was not ‘Mummy’ with them for hours at a time. Sometimes, I felt compelled to let tutors go if I felt they were not compatible with my chidren. After all, the boys couldn’t express in words if they were not happy but their behaviour displayed their thoughts at times.

I needed to be an advocate for them in so many ways. Choosing the tutors, choosing schools and nurseries and managing it all. It was a privilige in many ways to be allowed that level of control, to have a say in who I chose for my children. I was recently told by another mother that I have a reputation for only employing really good tutors. I am very proud of that, even if at times, it meant we had no tutors while I hunted for replacements. I feel my boys always deserve the best I can do for them.

ABA worked best with people who had an open mind. Those who didn’t necessarily follow all the rules. The ones who had the imagination to realise that a great social interaction in the playground between one of the boys and an unknown child took priority over learning to read. After all, those skills are the ones we most want for our children. Social inclusion is vital and needs to start at an early age. I have written before about how, when the twins were diagnosed at aged three, my wish for my boys one day would be for them to be able to go into a pub with friends and order a  drink. Thomas achieved that this year. I did not wish for academic success, that was too tall an order but I did wish for them to be happy in social settings and we have managed that over and above my expectations.

It also worked best when everything taught was meaningful. Why would a child wish to know the names of kitchen items? If they wanted to know the names of every Thomas the Tank engine, that was what they learnt to begin with. In doing so, they learnt that language benefited them, it was worth learning. After a few years, we could teach them the labels for less preferred things, like items of clothing, still meaningful and useful but not quite so desired.

Without ABA, my boys would not be the socially able, happy and positive boys (or nearly men) that they are today. We were helped by the fact that we found a fantastic , inclusive primary school where they were allowed to fully integrate. They learnt academics but most importantly, they learnt to mix in mainstream society which has set them up for life.

I have never counted how many tutors we had over the years but there are many who have left an imprint on all our hearts, who we will forever be grateful to. Those who truly cared about our boys and their possibilities. Many of them we are still in regular contact with, many of them still visit the boys and the boys are so glad to see them again. They miss them still, which just proves how they felt those people were their ‘friends’ and not just tutors. We count those special tutors as friends too. In many ways they are like a second family for our boys.

Do I regret any of it? No. I just wish there had been more help in finding and recruiting and training tutors. I also wish that there did not need to be the battles that also accompany running programmes. The unnecessary tribunals. For those who cannot afford to run a programme themselves for the time it takes to get to tribunal, life is hugely unjust and unfair.

We have living proof in all our boys of how life changing ABA was for them all. Happily, we are not part of a control study which might show how they would be without having had the benefit of it. I will never stop saying how important early intervention is and how we, as parents, should be allowed the choice to do therapies such as ABA.

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Twins – Ying and Yang

How many of you have a twin or both twins on the autistic spectrum? I seem to know quite a few sets affected. In some families, both twins are on the spectrum. Sometimes one twin is more severely affected than the other. In boy/girl twins it is often only the boy who has autism.
Statistically, identical twins have a much higher risk of both being affected, often quoted as 99%. In non identical twins, I suppose the risk is the same as for any sibling with ASD in the family ie around 8%. But is autism more common in twins than in a single child?
 
My boys on paper look remarkably similar. Their results of cognitive tests are often almost the same. Their ability to do other tasks are very similar but they are very different in many ways. There are no tests at a young age to indicate personalities.
I remember the first Ed Psych visiting them at age three, asking me if I would dress them differently so she could tell them apart. I laughed and told her she would have no problem! She had looked at their reports and presumed they must be identical.
 
Another Ed Psych remarked how opposite to each other they were, almost as if I had one child with ASD and the other without it. Each had an equal half. While one boy is sensory seeking, the other is sensory avoiding. One likes to eat continually, his twin needs to be reminded to eat. They mirror each other in so many ways.
 
They are proof of how different every child with autism is, even those closely related to each other.
 
Parenting multiples has its own problems. Not just practical problems like feeding and looking after two babies at the same time. As they grow up, they often both need attention at the same time. Any parent of twins will tell you how much harder it is than to look after two siblings who are close in age.
Adding autism makes what is already double the work, squared. Any child with autism requires so much more attention than a child without autism. Then you double it.
Double the time, double the therapy, double the patience. Don’t even think about the costs. Financial costs, costs to the parents’ mental health.
Are there any advantages?
For the twin, with a non autistic sibling, I would imagine the benefits are great. A permanent partner for life who understands you and supports you. The twin bond is very strong. Some say the bond to a twin sibling is stronger than the mother/child bond. So those twins are the lucky ones.
And if they are both affected? They have a partner for life too. Maybe not one who can provide practical support but certainly a sibling who loves them unconditionally without judgement.
Twin parents, like autism parents, have a mutual understanding. Those people chosen to be a combination of both twin parents and autism parents have a close affinity to each other. We support each other because we understand better than most, how challenging it can be.
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Graduation Day

Yesterday was my twins, Thomas’ and Benjamin’s (18) school graduation lunch. They have been at their special needs school for 7 years.
 
The boys had a wonderful day of celebration. They may not have many exam passes to boast of although we were told that Benjamin had just been awarded a distinction in his level 2 drama. A huge personal achievement for him.
 
For us, it was about celebrating the past 7 years and who our boys have become in that time. They had been through their primary education at fantastic local mainstream school accompanied by their ABA tutors. Moving schools and no longer having 1:1 help was a huge step.
Changing schools meant they had to manage alone, although within small classes and with teachers who understood them. They needed to learn to work independently and to take responsibility for themselves. It was a hard transition but one we felt was necessary.  It is stigmatising for some children to be accompanied by one to one support at mainstream secondary. We wanted our boys to no longer feel ‘different’. To be like everyone else in their class instead of always being the ‘special needs child’.
For the first few years, it was hard for them to adapt. Change is always hard and harder still when you don’t have your own personal support by your side. Being twins did not help. They were thrown together for the first time for years. They had to travel together in a taxi. They were in the same class together. They had always been in separate classes until now and even different nursery schools long ago. Rather than being a support to each other, they resented having to be together so much.
Over the years, they slowly made friendships. They forged strong bonds with many of the teachers. A small school has its advantages in many ways. The boys were nurtured in a safe, cohesive atmosphere.
In the past few years, they have become young adults. The dramatic change has only really happened in the last year. Suddenly, they are no longer boys. They have become adults. Not just physically, but in their demeanour, their outlook on life.
They talk of the things they want to do. The people they want to become. They are looking to the future now and not just living in the present which they did for many years.
The graduation was a very special day. We were able to celebrate just how far our boys had come since they started there seven years ago. It is not just about exam results. Life is about celebrating personalities and social skills and all those attributes with no grades attached.
We are proud of our boys for overcoming so many difficulties. They are polite. They are kind. They care about other people. They try their utmost in everything they do. They have some qualifications because they worked so hard to achieve them.  Thomas is a super fast runner because he trains nearly every day and is so determined. That determination has also driven him to pass maths exams and to learn how to handle his own emotions. Benjamin practises his drumming every day. He works so hard to aquire knowledge and skills both within and out of school. He too has the same determinaton to succeed.
We were so proud of them yesterday. They were so proud of themselves too.
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