Sometimes major breakthroughs in one area come with challenges in another area. This has been so true for us this week as one child has made a huge leap whist at the same time we have had to come to terms with yet another diagnosis for the other one. But whatever both children face I am determined to stay positive. They are both so young and we have the support of some great professionals and a great school for Isaac that I have every reason to be positive.
So I will start with the new diagnosis.
Isaac has always had a eye squint. He was born with it. All my family wear glasses and all my husbands family wear glasses too, so the kid had little chance of avoiding some sort of minor eye issues. Saying that, so far his twin sister has passed every eye test and has no trace of a squint so perhaps his squint could have self corrected given time.
Unfortunately his squint has been getting worse as he has aged. He has, and still does, attend the hospital eye clinic regularly. Then came his diagnosis of neurofibromatosis type 1 in Decemeber and more frequent visits to the dreaded eye clinic, more drops to be administered and more lights shone in his eyes. Neurofibromatosis is a tumour condition that can cause eye problems as tumours form on the back of the eyes. It has always been difficult to fully test Isaac’s eyes as he only focusses on the things he chooses to and so looking at boring pics of grey trains and houses was never high on his agenda. And his learning difficulties and global delay and inability to speak makes conventional testing inappropriate.
Back in mid March I mentioned in my blog ‘Sometimes I cry’ that specialists were now thinking Isaac only had vision in his left eye. One of those gorgeous brown eyes had not formed properly at birth and extensive retinal scarring meant that his vision was affected. Sometimes you could see only one eye was focussing but other times it was yet another ‘invisable’ disability.
This week we had a home visit by a vision impairment pupil support specialist. Now that Isaac is in full time education this specialist wanted to visit and talk to us about anything we could do at home or the school could do to support Isaac. Through detailed information from Isaac’s eye doctor, information from his nursery and from looking at home photos and videos of Isaac he was able to confirm what we had been hoping to avoid. In addition to having classic autism, neurofibromatosis type 1, global developmental delay, severe learning difficulties, pica and seizures our son also has a vision impairment. What a lot for a 4 year old to deal with! I was sad, I was heartbroken for my baby and frightened of what the future holds but I am determined this is going to be positive. My God can turn any negative to a positive.
Here are the positives:
He is right at the beginning of his education so full support can be put in place now.
He is still non verbal and his speech and language therapist was about to introduce pecs (picture exchange communication). We can now ensure the size and colour of pics helps him see these as well as possible.
His disability money has recently been reviewed and his award given indefinately so informing them of this new diagnosis would simply be a phone call rather than a re-submitting of pages and pages of forms.
His left eye shows great vision so he will not require glasses at present (which is fantastic as these would only get chewed and eaten!)
We now have a further explanation of why he likes to walk up and down beside bushes and walls. He has remarkably developed his own coping stategies by using these large visual markers to support his vision. This boy is inspiring!
And his vision seems to make a remarkable recovery when food is involved. Yesterday I had to leave my soup for a minute to deal with his twin sister who was lying on the sofa unwell. By the time I returned to the kitchen a minute or so later here was Isaac helping himslelf to my lunch!
His first tooth fell out this week too. In true Isaac form…he ate it! I’m sure it would be a good form of calciun and it is certainly not the worst thing he has ever eaten I can assure you.
And now for something even more positive. Something remarkable. Naomi came home from nursery last week and told us the name of a friend! This girl has never spoken in nursery, although she has been going for two and a half years now. She is selective mute and has social anxiety and is on the autistic spectrum too. She tells us about everyone in nursery (staff and children) by describing what they are wearing, so to finally know a child’s name is such an answer to prayer. This little boy is in her group at nursery and she even said she plays with him! I thought I would push her further and ask ‘have you spoken to him?’ If you count a whisper then we have major progress indeed! My sweet little girl then asked me if we could write Ewan a letter and ask him to come and play with her.
So mummy wrote a little letter to a family she has never met inviting a strangers child to come for a play date. And this mummy was as excited as her daughter when Ewan’s mummy called to set up thier little date. I can’t wait to tell you all how it goes. However anxious or nervous my daughter feels on the day I am determined this is going to be positive. We will do a run to the house first, we will talk about what will happen and we will read stories about playing with other children and going to other people’s houses. And the nursery will support them both and encourage the friendship too. A first ever friend to play with.
Whatever else this coming week brings we have this to look forward to and whatever else we face I know I always have my family and my God.
And a determination next week is going to be positive as well.
Here is my wonderful daughter playing a boys game ready for her first ever play date: