The Oxford dictionary says that validation means “...recognition or affirmation that a person or their feelings or opinions are valid or worthwhile”.
What’s that got to do with special needs? Well, a lot, in my opinion, although you’ll make up your own mind on that.
During my time at university studying to become a learning disability nurse I remember a tutor telling us about the “does he take sugar?” phenomenon. Basically, this means that when a person with a disability is out in public with an able-bodied person, attention is always given firstly to the able bodied.
In other words, when taking an order, a waiter/waitress will ask the able-bodied guest whether the disabled individual would like sugar (for example) instead of asking the person directly. Sadly, I saw this a lot in practice as both a care assistant for many years and then a nurse working with adults with neurological disabilities of all kinds.
In my personal life, I have seen the same thing happen to me when I am using my wheelchair due to my Multiple Sclerosis. It’s a strange feeling to be suddenly like a new (and less valued) person just because I am sitting down in a wheelchair!
Our son is a full-time wheelchair user and has been since he was nine months old due to spina bifida. In all honesty I have seen almost the opposite effect in that people absolutely swoon over a child in a wheelchair. I suppose this is because he is of course very cute and there seems to be more “pity” towards the situation of a child being disabled.
That’s a much bigger discussion; what I really want to communicate is that my other two children (triplets...how lucky are we!) are the ones who are often now overlooked, and Jacob spoken to etc much more. I often wonder if other parents find the same thing happens within their families and how they feel about it?
It makes me wonder what will happen when Jacob grows up and is a teenager and then an adult wheelchair user.
I also personally seek validation as a mum of a child with additional needs. There are times that I am sitting with Jacob alone if he has come out of a seizure for example and I just want to scream to the whole world how deeply my heart is hurting watching my beautiful little boy be taken hostage by this horrendous epileptic activity in his brain.
So, what do I do? I’ll ring people, send messages, post on social media, write blogs or ask for help in other ways. I feel I want my pain validated because it has to be so hidden, so I don’t scare Jacob when he is already feeling so frightened.
As someone with anxiety and a chronic overthinker, I then worry that people will feel I am using Jacob’s condition for attention or I am blind to anyone else’s pain when neither is true at all. It also makes me feel very weak that I can’t just “get on” with things that day for whatever reason.
Jacob had a particularly rough afternoon today and I’d happened to have been speaking to my big cousin, Louise, who I don’t see very often but thankfully know I can rely on. I’d told her I didn’t feel strong and she said, “You keep going and you never give up. That’s strength. He doesn’t see your hurt or your worry - he just sees his mum who is always there for him and always will be. That is most definitely strength. You are his person who loves him the best.”
She made me realise that yes, I’d reached out and needed to tell others about how hard I was finding it to support my little boy today, but that there are so many times it happens that I don’t feel the need to talk about it. I just move on and get on with our life.
So, the days I can’t do that I will try to be gentle with myself and realise I am only human and sometimes you really do need someone to validate the struggle.