Exam time.

It’s that awful time of the year for our children. Exam time. How can you take exams when you cannot read or write or communicate at the same level as those who do not have autism ?

My boys at diagnosis were non verbal. They did not understand (receptive) or speak (expressive) language. In fact, as with most children with severe autism, they did not and still do not understand the subtleties of non verbal language either. Basically, they had no method of communication.

ABA changed all that. Hurrah for ABA and I will never stop saying it. Within a few weeks of starting full time (35hrs) of ABA, Benjamin at three and a half made his first sound, a request for water, just ‘w,w,w’. But, it was a start and from then onwards, he learnt to talk, slowly and painstakingly.

It was the same for all my boys. Years and years of intensive therapy and round the clock input from me too and they learnt to use language.

For the older boys, it’s still not language in the way that you or I use it. It is very functional but they get away quite well socially using the language they do have creatively. It is not enough to pass exams and to write essays. It is not enough to ever be able to read a novel or even a story book. But, it is enough to read facts and learn huge amounts of information on chosen subjects. Thomas can talk athletics at great length, whether or not you actually want to hear the feats of his sporting heroes is another matter.

The older boys have taken a few exams and have a few qualifications which is great. Everything they achieve is so much more than we ever hoped for and they try so hard. One of their most astounding qualities is to try and to keep trying and to strive to achieve. It is very evident in Benjamin’s music abilities, he practises for hours and hours.  Thomas does running training six days a week and is equally determined to succeed.  These successes for them are more important than passing exams will be.

Hector, 16, is mid exams now. He is the one I feel for. At age five, he was assessed as having two year old language, single words. It had taken three years of hard work to get him to speak and understand two year old language. He was three years behind his peer group. At least three years.  He has struggled with language but he has overcome so much and now holds normal conversations, a huge achievement. Huge. However, he still struggles to comprehend written language. Like his brothers , he has never read a book for pleasure.

The exam system in this country means he is having to take exams at the same time as his peer group. Not only has he had to catch up on years he missed when young, he is also expected to catch up and then keep up year on year.

He is stressed. He feels he has to achieve what everyone else does or he will be labelled as ‘thick’ and ‘autistic’. How he hates that word still.  Most people do not understand how it feels to be a young person struggling to learn to speak, to read, to achieve academically what your brain is capable of but your severe language disorder hampers you from doing. He does not celebrate his autism. To him, it is something which prevents him achieving what he feels he should be able to.

We are so proud of him. Of how well he has done and who he is today. He doesn’t appreciate where he has come from. He cannot remember much of his early childhood. We remember and will never forget the lost little boy, who regressed at just two and lost all his language. The exams he passes are a monument to him, to his ABA tutors in the early days, to the wonderful More House school where he has been for the past eight years and to us, his family.

We will be proud of all that he achieves. But I want him to be proud of himself too and sometimes that is the hard part. I hope he passes his exams. He deserves to pass as he has worked so hard to overcome what most children take for granted, language.



It’s alright to feel miserable

Some of you may have read between the lines from my last post that I am not alright. I held back on that post hoping to feel better, but, I felt worse.

Most of the time, I am so busy that I don’t have time to think. My best friend/enemy, adrenaline keeps me going and going until I crash. Sometimes the crash is physical which I have learnt to deal with. Sometimes, it’s mental. I have learnt to deal with that too.

This week, it’s defintely my mood which is suffering. I am exhausted. Perhaps it’s a form of PTSD following months of EHCPs and PIPs. I can’t begin to tell you how stressful that was. It is over now and I was successful but at what price?

The years take their toll. Autism does not go away. It changes. The stress on a parent never goes away and I have four boys to look after.

When I get like this, I just feel ‘why me?’ I confess that is my overriding thought. ‘It’s not fair’. It’s not a pity party. I don’t need pity and neither do my boys. We are all doing amazingly well. We have achieved so much as a family.

Close friends try to reassure me. To remind me of all the positives. We are all healthy. The boys are truly loved and I am in loved in return. I have holidays to look forward to. The boys are all now in the right educational settings. I am a published author. I should be feeling happy and proud of myself.

I acknowledge these feelings of misery when they come. I accept them. They are what makes me human. I am not a robot. I cannot be Pollyanna all the time. I know they will pass but at the time, I am utterly miesrable. Miserable with my life.

Nothing anyone can say helps. I think of it as deep hidden sorrow. It’s not good for it to stay inside and eat me up slowly. It needs to come out and be recognised and then it will leave me. Slowly, over the years, each little bit leaving will make me whole. My black periods are seldom these days. I hope there is not much sorrow left inside.

I don’t need to make happy lists and thankful lists of what I have got. I don’t need to fill my time to distract myself. I just need to acknowledge that pain and let it just be. It will pass.


Do you ever feel invisible?

This is not an attention seeking post. I am not looking for compliments and reassurances from you, the people reading this post. The very fact that you read my blogs means you are probably in the same situation as I am. If you are not, you will most likely have some empathy and understanding of what it is to be a special needs mother.

Invisible? To whom? Not to our children. We are probably more visible to them than many mothers are. We are there with them full time, every step of the way. They are more dependent on us and for longer than most children are. We are ever present.

I hope we are not invisible to the schools who look after our children, to the teachers and tutors who teach them.

But, to many, we are invisible. A hidden army behind closed doors. An unpaid army of carers looking after our children and fighting for them, for what they need and deserve.

It’s a recurrent theme in my life. That feeling of not being visible or that what I do on a daily basis is not visible. If I say ‘I am doing four EHCPs all at the same time’ to another special needs mother, I get cries of ‘Oh my goodness, four!’ ‘That’s way too much work for one mother’. If I mention it to someone who has never heard of an EHCP, their response is to say ‘Oh, well, I’m sure you will get it all done’ ‘And what have you been up to recently? You must have lots of spare time now the boys are all in school full time?’

Invisibility is an evening with other parents, who all ask each other how ‘work’ is going, who seem to have an identity.  Often, they don’t really know what to ask me about, so they don’t ask anything. I have sat at dinner parties feeling totally invisible.  I can’t talk about my ‘work’, it makes them feel awkward, they don’t want to hear about my struggles with four EHCPs. It’s just paperwork after all and don’t we all have to do admin?

I know some special needs mothers do manage somehow to go to a paid place of ‘work’. I am in awe of those who manage any sort of career.  I cannot.  I won’t go into all the reasons I cannot work, I don’t need to justify myself.

I know I impose guilt upon myself. I do not earn an income. I feel guilty for spending money that I have not earned. Where does that guilt come from? I believe it stems from years of invisibility, of being made to feel I don’t do enough.

How do we, special needs mothers, get recognition? What do we need to do? What do I need to do to stop feeling like an invisible woman?