I was reminded the other day about how far we have come with J and his autism and W and his wobbly eyes (Nystagmus).
I know this blog is centred on J and our life with his autism, but as W is his little baby brother and a part of the family I feel I can traverse off course slightly and chat about him a little.
I met a woman the other day, through something to do with J, and I explained about W and his wobbly eyes. It can be off putting for people who do not know as they think he is looking wildly about his surroundings so to explain to them puts them at ease and then talk closer to him so he can see them.
I remember very vividly the day I began to worry about his eyes. He was around two and a half weeks old. His eyes only moved a few times side to side.back, and then stopped. But, from research I did on Google and a chat with my wonderful cousin K who is a junior doctor, Nystagmus became the next medical word which would dominate our life and change the course.
I have explained before in this blog about the reaction my doctor gave to me at our six week post-natal check and her laughing attitude that Nystagmus is a rare disability and he couldn't possibly have it.
I obviously sought a second opinion, had to pay for private consultations as the NHS in this area do not send babies off to be checked for vision problems until at least nine months old and then add on the (at least) ten month waiting list. He had an MRI scan to rule out a brain tumour, which is linked to vertical Nystagmus, which by seven weeks old he had also developed.
So, backing up to this meeting I had the other day, and after I had explained about his eyes, the woman mentioned her son who has similar eye presentation. But, she exclaimed, "he is only three weeks old, so it's too early I expect to tell". How do you tell someone that actually it is not too early, three weeks is when baby begins to explore their vision and this is when we start to notice problems.
How could I say that it was exactly the same with W? That his eyes did exactly what she was describing of her son?
I felt so sad. Sad that another baby has this condition. Another mother has to endure the initial stage of worry, disbelief, hope, and blame. That the sight is very unsure of at this young age. We have to wait until W is able to talk to me to tell me exactly how far he can see and how accurate he can see - blurry outlines from a distance?
W can see around a metre away. He responds to lights that far. His close up accuracy is good. He will grab noses, hair and glasses off of faces, and I have to warn people that just because he needs to have things closer to look at, it doesn't mean he isn't a typical baby and will yank at you with all his might!
I thought back to how quickly this past year has gone. How desperately sad I was last year at the thought of another child growing up with a disability in this world of fast paced, uncaring, thoughtless people.
How it had to be my fault he had this condition. How people will gossip about me having two children with (different) disabilities and how it had to be something I had done.
Now, after having the all clear from the MRI scan, we were able to move on in the knowledge that it would not kill him, but it would affect him his whole life.
Those parents have to start this journey. They have to deal with the emotions and upset. It is hard, but, a year on and we are progressing very well, and W is my amazing, beautiful, clever, funny, and spirited little boy, who has a mummy that will not stand for nonsense from the medical profession, and who will always fight for his rights, and love him endlessly.
UPDATE - 23/7/13
I have written two more posts since I wrote this above.
You can find them here -
Update on the toddler
The Baby is now Three!
First ever post about it - this was the first time I had written about it.
