His birth was fine with no complications, and holding my 6lb 8oz baby boy, Samuel, was the most wonderful feeling in the world. He was a tricky feeder, I had dearly wanted to breast feed but couldn’t get him to suck, I tried for 4 days, but just couldn’t do it and desperate for him to feed made the decision to bottle feed.
He wasn’t much better with a bottle, but we got by, he took little and often and put on weight nicely, so there were no concerns. I started wearning at about 4 months and he seemed to like it. There were no real issues.
Then at 5 months old Samuel became unwell. He suffered an extremely high temperature and developed a cough that sounded like a dog barking. It was Croup. He was admitted to hospital for treatment as he was struggling to breath. The hospital treatment worked eventually and Samuel recovered. However, he was to go on to have many bouts of Croup, I think in the end we were admitted to hospital on 7 occasions, sometimes having to stay for 3 or 4 days.
By the time Samuel was 3 years old the incidents of croup were less frequent and not as severe, but now there were concerns about his speech and development. He attended a nursery and staff were concerned at his unclear speech and lack of language skills. His motor skills were also extremely poor.
Samuel was referred to speech therapy and eventually Salisbury Hospital Speech and Language Department for tests. At 4 years old he was diagnosed with a submucous cleft palate, hence why his speech was so unclear, but additional to this the consultant told me that he wanted to test Samuel for a chromosome deletion syndrome called 22q11.
Following a blood test the diagnosis was confirmed. Samuel had chromosome 22q11 deletion syndrome.
Looking back at that time I can now see that I was numb.
I was upset, but didn’t really know what it meant, and so maybe I wasn’t as upset as I should have been. I feel quite guilty about that.
From that point on I managed to stumble my way through the minefield of red tape to get Samuel the help that he needed. I faught hard with his school and Local Authority to get him a Statement of Special Educational Needs, teaching assistant support in school and I managed to apply for Disability Living Allowance for him. He underwent two operations on his palate to try to improve his speech clarity, and he continued to receive speech therapy. As he got older there were more difficulties that became apparent and therefore more professionals that I had to take him to see.
Last year Samuel started in Year 4 at school. It had already been discussed that he would not be able to cope with mainstream secondary school, but this was the point that I felt a move to special school might be needed sooner rather than later. He had become very dependent on his teaching assistant, and although this was helping him cope at school, it wasn’t giving him any skills in independent learning. There were also friendship issues for Samuel.
I made the decision to view two local special schools, with a view to suggesting a move at his next statement review meeting.
My husband came with me to both school viewings. Walking around the first school I knew it was right for him, I could feel it.
That was the point that I finally came to terms with my son’s disability.
[This post originally appeared on The Mum's To Do List]
About Sally
Sally Whittle is founder of the Tots100, Foodies100, BlogSummit and the MAD Blog Awards. When she's not working, she can be found blogging at Who's the Mummy, or having fun with her 7 year old daughter, Flea.
Fantastic post, I have commented on the actual blog but I wanted to say I could be writing this post, it is very much so a grieving process, a hugely hard fight but worth it x