Achievements.

I have been reading all the posts on Facebook this week by parents dropping their young adults to universities around the country.  My older boys are 19 but were in a class a year down at primary school so their contemporaries have all hit 18 this year.

It’s bittersweet reading about other people’s mainstream children. We chose for the boys to go to mainstream state primary with their one to one ABA (applied behaviour analysis) tutors. It was definitely the right decision for their younger years. They learned alongside mainstream children. They were the only ones with autism in their classes. They learned how to interact and how to cope with everyday life, not cocooned in a special needs bubble. For us, this was even more necessary with all four boys having autism. We are always in danger of the boys being isolated from the world, living in an autistic school not of our own making, but by default.

They became ‘friends’ with some of those children. Sadly, not life long friends though. Most of those primary children are still mates with each other despite heading to different secondary schools. That’s hard to watch too, over the years, those wonderful sustained friendships which my boys don’t have. And now, I am reading and watching those children, now adults, stepping out into the real world, fully independent.

It’s hard not to compare. It doesn’t help us. It doesn’t change anything. I do not want to be bitter or resentful. But the irony of posting an ad recently, recruiting for buddies and people to hang out with the boys is not lost on me as I read those posts.

I am proud. I am so proud of my boys as you all know who read my blogs. I don’t want to compare them with their contemporaries.

I want to compare them with their younger selves. Those lost little boys who could not talk, who could not communicate with me or each other. Those little boys who had meltdowns and tantrums and would run without looking into people or traffic if we had not been there gripping their hands. Those boys who only ate pureed food for years, who screamed and screamed if they needed hair cuts. Their world was a hard one, hard for them and for us.

We worried that they would never talk. They learned to talk. We worried that they would only eat a few restricted foods and how that might damage their health. They now eat almost anything and everything. We worried that we could never take them out in public without people staring at us and tutting at us. We take them nearly everywhere now. They can sit and eat, they can watch a film, they can even watch live theatre.  We worried that they would never be able to go out alone safely. They have started to be able to do this.

The academics have never been the important bit for us. Learning about life and being able to access it and most of all, enjoy life has been our one abiding mission. We have certainly achieved this.

Our boys have achieved so much more than we ever dared dream of. Yes, those other children are now heading to university but they were always going to do that. You could already see that at age seven. They have achieved what was predicted for them.

Our boys have achieved way, way more than was predicted for them. How incredible is that? And how proud I am of them all.

 

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We parents do have a valid voice for our children.

Twitter wars.  Twitter is a frightening place to be a parent of a child with autism. A very small but very vocal section of the neurodiversity movement are on the defensive. I do understand that for years, those whose autism has been largely discounted and ignored are now asserting themselves. Their signs of autism may not be as obvious to others as the autism many of our children display but they too need understanding and support.

The problem seems to be that autism is now an all encompassing label.  Those with what may have previously been labelled with Asperger’s are now under the autism umbrella along with those with classic autism. The arguments stem in part from the fact that those adults want to be recognised not as having a disability but a difference.  We parents of children with the more severe form of autism want recognition that our children do have a disability. There are probably many who exist in a grey area between the two states.

Should there be a cure? Those whose autism does not cause them pain or distress argue vehemently that there does not need to be a cure for autism. Increased awareness and acceptance but no cure. Talk to a parent of a child with severe gut issues, epilepsy and learning difficulties whose child may be constantly in pain or distress would counter argue that, yes, there should be a cure. But again, what about those in the middle who may display traits of brilliance alongside their very obvious difficulties in navigating their lives.

Discussion is vital. Awareness and acceptance are vital. We need to see each other’s point of view.

My real issue comes with the fact that a very small number of those more able people, criticise parents trying to do everything they can to support and help their children with severe autism. They are probably only a tiny minority but with big voices and they attack on twitter. How do they know what it is like to care for a child who may never talk or communicate? How does anyone know except those parents who care for their children 24 hrs a day.

I resent being criticised for giving my children the opportunity to have had many years of ABA therapy.  There has been talk of children growing into adults ‘suffering’ from PTSD due to ABA therapy as young children. What my boys are ‘suffering’ from is love. They were diagnosed at two and written off, looking forward to a life of institutional care. We turned that around with ABA. Come and meet my boys, four happy young people. They have futures to look forward to, they are not distressed, they are not traumatised. I argue that before ABA, the world was probably a much more traumatic place for them to live in.

Thanks to ABA (applied behaviour analysis) their lives have been transformed.

I do not want to waste my energy arguing with those who would argue against helping my children to have happier lives. I want to use my energy to write blogs, to write books, to inspire parents of young children newly diagnosed with severe, non verbal autism, looking for some hope. Because there is hope and I do not want the negative voices to drown out positive parent voices.

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Please talk to me…but not just about autism

I crave silence from conversation. But, I also crave conversation. No wonder people don’t know whether to talk to me or not, I don’t know if I want them to either.

My four boys are all now fully verbal. That wasn’t always the case. When they were little and newly diagnosed with autism, we worried that they might never talk. Fast forward sixteen years and they hardly ever stop talking. It’s not necessarily conversation though, it’s talking, which to me is not the same thing at all. Some days, I am ‘talked’ to or even at, by all four at once. It is quite normal to be juggling two or three simultaneous conversations which certainly keeps me on my toes and having to concentrate. Even if I negotiate turn taking, I will then still have different threads of conversations from each boy in turn.

It’s hardly surprising that sometimes I long for silence. A quiet house to myself to be able to think straight. But equally, I long for what I call adult conversation. I want to discuss and have reciprocal conversations about more varied topics than my boys do.

A few weeks ago, I managed a rare morning to myself to meet a friend locally for coffee. It’s harder to find free hours away from the boys in the holidays and consequently, even more precious and necessary.

I was approached by an acquaintance.  She wanted to introduce me to the woman she was with, who wanted to talk about autism and ABA (applied behaviour analsyis), the method which got my boys from being non verbal to fully verbal. It’s life changing and I want to shout about it from the rooftops, but only when I want to talk about it. Which means, I need a morning off from autism sometimes. She wanted to arrange a meeting with me. I don’t have the time to meet with everyone who wants my time. I really, really don’t.

I spent ten minutes scribbling down websites and finally said that all the information she was asking me about was in my book. I wrote it because I was asked the same information so many times from so many people that I realised that for every hour spent talking to one person, that hour could be spent writing that information. Slowly, I found odd hours to write a book.

I hate to feel I am peddling my book to people. I ended up saying that there was a copy in the local library she could borrow. Perhaps she didn’t want to pay for a copy. Talking to me is free.

All I wanted that morning was coffee with a very good friend. To talk about anything other than autism. I also read fiction, go to the theatre, have opinions on brexit. I am not just a walking, talking ‘autism’ mum.

If our children are labelled, then so are we. I sometimes feel that is all people see me as. Someone to talk to about their child and autism. A living autism helpline.

I am not unfeeling, how can I be? I have four boys with autism. I know the help out there is pitiful. I know support is not easily available, that the information people need is so hard to find. I know parents are so stressed and need someone to talk to, someone who knows the system, who has been there and will understand.

But, I can’t be there for everyone who wants me to be. I am exhausted by the system too and by my life some days. I shy away from public speaking. I fear I will be engulfed by people wanting to talk to me.  I cannot be a full time counsellor, I don’t have the time. I am trying to concentrate my energy into writing to reach more people that way. I know it’s not the same as a one to one personal chat but often it’s all I can do.

Please talk to me. I have some great holiday book recommendations!

29 August 19-14-48 BEN