Parenting is for life, there’s no doubt about that, but having your child live with you, be financially dependent on you, and caring for them throughout their life is another level altogether.
That’s the level of lifelong parenting so many parents of special needs children like mine have to face.
My child will always be dependent on me.
He’ll be dependent financially as even if he somehow managed a supported job (very unlikely) he has no concept of money and he can’t manage a bank account.
He can’t even sign his own name never mind type numbers into a chip and pin machine.
While he will likely receive benefits in his own name that will always require to be managed by someone else, mostly likely myself.
He’ll be dependent physically as at ten he still can’t jump, catch a ball or dress himself.
He will need support to choose appropriate clothing and dress, see to his personal care needs including toilet needs, teeth brushing and hair brushing, eat, drink and remain clean.
It is unlikely he will ever be able to cook a meal, clean or keep a house.
He’ll be dependent on me socially as he has no awareness of others, safe places to go and he he has no speech.
He is vulnerable in every way and always will be.
So, what is the point of helping and supporting him to be independent in anything if he’ll always be dependent all his life?
Well, despite his complex and severe disabilities it is in everybody’s interest for my child to be as independent as is possible.
Just because my son has significant disabilities he has the right to be included and given the ability to do all that he can.
So when dressing him I give him a choice (unless school uniform as he would never choose this) and encourage him to participate in dressing by raising his arms, stepping into trousers and pulling jumpers over his own head.
He may not have an understanding of, ‘inside-out’, or, ‘back-to-front’, etc. but he can still help where possible.
When cooking for him I let him choose by showing him photographs or packets before cooking.
At bath time, I let him choose his own toys and put these in the bath tub. He also gets to choose his bubble bath and pyjamas.
When he can do something, like feeding himself with a spoon, I always let him. It’s great for his self esteem and allows me to do something else at the same time.
I start the zip on his coat and leave him to do the rest. He delights in pulling his own shoes and socks off when he comes in the house.
It would be so easy for me to do everything for him.
After all, he’ll always be fully dependent so why bother?
Well, the more he can do for himself the better he feels about himself and the better I feel too.
It will take much longer for him to master basic skills but the process of teaching him is so worth it.
The excitement on his face when he managed to get a sock on his foot for the first time was worth its weight in gold.
He’s not a, ‘lost cause’.
No child is - ever!
Even the most disabled child needs to be encouraged to be independent in whatever areas they can.
It’s worth the effort for them and for us.
My child will always be dependent on me for sure but if he can do something it’s my job to help him learn it to the best of his capabilities.
It’s about believing in them.
I believe in my son and always will.