Doing our Best
Simon is a fantastic 6 year old boy with Fragile X syndrome, but as is no doubt true of many other parents, we have found it hard to enjoy Simon and have felt our hearts sink when he comes home.
We can only do our best, and we need to know that this is the best we can do for our beautiful children. I wanted to write this to illustrate that we are all in the same boat, and that no one should feel guilty about having a disabled child. So we can see the positive side of our child, we now sit with him each night and write down 3 positive things which he has done, even if it is as simple as good talking or signing.
We still try to fit our life around him instead of fitting him around us and inform friend and foe before we go out! We keep to a routine so he goes to bed by himself, which does help to keep some of the behaviour under control.
We wish that the wider world would instantly understand when our children ‘inexplicably’ (to them) have a meltdown in the middle of the supermarket. Severe learning disability is such an unknown to most people, that even though they would actually like to help, they shy away. Education is the key here. Remember the person you were before having a child with a learning disability, they are all around you now. Think about it...
Debby, mother to Simon.