Far from being the non-interactive, non-communicating child we were not-so-gently warned to expect, he has grown into a gorgeous, happy little soul who can indeed communicate (very clearly too when the mood takes him!).
However, one area that we have struggled with has always been his mobility and muscle control.
Sams low tone means that its harder for him to support himself; his neuro issues mean that he experiences an alarming amount of abnormal movements, and struggles to make his body move in the way he wants it to.
This has increasingly led to frustration for him, and us.
He’s trying so so hard, but his brain struggles to send the right messages to his limbs. It has taken us the best part of 6 years to build his strength up enough for him to now be developing a sit-balance, so we always knew independent mobility for Sam was a distant future prospect.
I have no doubt that he will stand, and walk, in time.
So you will understand why, at our last Child in Need meeting at school, I ended up crying on his teacher, nurse and social worker (who has now sadly left the service… and what a huge loss it is).
As the meeting was at the end of the school day, Sam joined us with Amanda, his class teacher.
It was obvious to all that he was excited about something and Amanda kept grinning at him and telling him ‘not to tell!’.
Curiosity piqued, we had to know what was going on… Amanda then produced one of the school’s tablet computers and proceeded to show us a short video of my little man, trialling a power wheelchair and driving it BY HIMSELF.
This is a sight that we have longed for, and had not expected for many years yet.
He knew exactly what he had to do – he’s been watching the other children. Learning. Taking it all in and working out what to do, for the past 18 months!
I think I had tears coursing down my face all the way home, while one very happy, very proud little chap chattered away to me from the back of the WAV.
My little man, the boy who continues to defy predictions.