My children are all grown up! My son is almost 21 and has Aspergers. He is high achieving and is at University doing a Physics Masters. My daughter my baby is now 18! and so I find myself a mum of 2 adults which is a little scary.
My daughter is Autistic but also suffers from a rare brain/mobility disorder called Spinocerebellar Ataxia. This is a progressive condition and affects her mobility and spatial awareness as well as affecting her cognitive abilities.
She is still able to walk a little but appears drunk all the time and at times it's worse than others. As a result she falls over frequently and pin balls off furniture in the house. She suffers with pain and it is now starting to affect her bladder etc.
It has been a very bumpy road bringing these two wonderful young adults through their chilhdood.
My son is going to be able to live independently as indeed he already does renting with other Aspergers students at Uni but my daughter is going to always need support.
She is no longer at school as the school she went to for 6th form despite offering all the support she needed got things so very wrong and the headmaster admitted to me that they had indeed failed her badly.
It has been such an upsetting and confidence shattering time for my daughter and for me.
My ill health and history of depression has meant that things have been even tougher.
I am disabled myself now and physically struggle to help her with some of the physical needs she has and so the struggle will unfortunately continue.
I am scared of what the future will bring for her and for us her parents.
I feel that maybe I need to document all that has happened if not in the hope that I could support others going through similar issues but the fact that I have held in so much for so long and to document it may be beneficial for me.
And so my plan is to little by little write about what has happened and what we have coped with over the years which is no small achievement if in fact I can call it an achievement when we are still going through it but hey, we have got to this point alive just!!
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