We all worry about our children.
We worry that they will be unhappy or might not make friends or might struggle with all manner of things. Will they read at the “expected time” and to the “expected level”? Will they be able to “keep up” with the other children? Will they be “good enough” at school?
We all worry.
But when your beautiful child has a complex range of disabilities those worries really are in a whole new league.
One of my greatest wishes for my son is that he will have true friends.
It is a simple wish really but it has been a huge worry.
Because, whilst his wheelchair is obvious, what you don’t see from photos is his learning disabilities or social difficulties. Yet those differences can make a child stand out as being “different” just as much as the wheelchair does.
And sometimes those difficulties can be even greater barriers to overcome when it comes to making friends.
Yet we have just had the ultimate friend moment -THE SLEEPOVER!
One of Adam’s friends (neuro-typical, no disabilities) wanted to sleep over and both boys were excited.
A perfect moment!
Of course, Adam was awake till after 11pm, overwhelmed with excitement that his buddy was sleeping in his bedroom, thinking ahead to the next morning and beside himself with excitement that his friend will be there when he wakes up.
He needed to get up twice during the night to go to the toilet (not easy with a child who doesn’t stand or walk) and talked till way too late. His buddy was even asking him to be quiet!
He was up too early the following morning and utterly exhausted most of the day.
Just as most children are when they have the first friend come for a sleepover!
His friend stayed all day and had endless patience with him.
We played a game but Adam didn’t cope well with it, we did some baking but Adam didn’t cope well with it, we went out for lunch but Adam couldn’t eat it but his friend carried on regardless of any reaction, as though everything was perfectly typical, and we had a great day.
Not once did that lovely boy ask why Adam couldn’t roll the dice to play a game or why he was getting uptight. He just carried on and let Adam do whatever he needed to do.
Because they are true friends.
I follow the writings of Rainbows Are Too Beautiful and that is where I saw the term “#madeupmilestones” being used to describe the things which are special to us as parents of disabled children but which don’t always have the same importance to others.
My son may never reach the milestone of walking or sitting unaided but I am celebrating this as the milestone of making a true friend. A friend who wants to spend time with you and who wants to stay over at your house is a big thing. It is a milestone which goes unnoticed for most but it is as real as any other to us.
And this is just the beginning because Adam has a couple of other friends who want to come for a sleepover too!
Today I have hope for a more inclusive future.