Let’s start at the end.
Ive been sat pondering how I should start these blog posts, do I start with why is this so important to me, why should anyone else care. Then I realised whilst these things matter, I would like to tell you a story, a story of which hopefully some of you can relate. A story of a perfect little boy born in April 2015 and his mother, that mother is me and the perfect little boy is my son, who at the age of three was diagnosed with ASD (Autistic Spectrum Disorder).
I would like to start this story at the end, and when I say the end I mean, when finally all the doubt and questions had been answered. At last I could finally give people the ‘solution’ to my son that they and I so desperately wanted and I can finally start the journey towards giving him the support he needs to have the life that he deserves. This was our journey to diagnosis and I would like to share it with you for my little boy and anyone else who has felt the loneliness that comes with awaiting a diagnosis. Furthermore I decided, with the aid of YMCA North Tyneside, that I would like to set up a group for families of children with autism; I know how difficult it can be and I’m hoping this group can help anyone who is the same position… Details coming soon. But how did we get here? Here is the story from the beginning…
My little boy was born with an innocence like no other, the best thing to have graced this very earth. Everything you could dream of with his perfect little face, eyes hair; everything beautiful from fingers to toes. The first moment I laid eyes on him I knew I would do anything to protect him. The usual things you think as a parent. The next few months proceeded as you would expect from any other new born, the changing, the feeds, the up and downs at night.
At the age of about 6 months I went to a health visitor appointment and she was asking the usual questions of “does he coo?”, “how much does he eat”, “how much milk does he have?” And then she said “has he started pointing?” to which I answered no, as he was hitting other milestones I didn’t really think anything of it at the time however for a while afterwards I remember trying so hard to get him to point at things, but he just wouldn’t. This was when I started to ask myself, is my child different? And maybe something wasn’t quite what it seemed.
When he turned one I started to notice the way in which he played with toys and that things he was interested in were different to that of children that I had experienced before. He would also zone out if you were talking to him as if he were ignoring you, but I assumed its just him, children have different interests and they progress at different speeds, maybe it was something I was doing or not doing. Blaming myself was something I did a lot in the beginning.
He started walking at eighteen months (which I knew was late). He never really had a tumbling over phase, he would just walk from A to B no help needed. He has always been a very fast learner, but won’t do something until he can do it and do it perfectly.
From 18 months onwards he started other little “quirks” that I found a little strange. He would sort things into lines and when he played, his play was methodical. There was a reason for everything he did; you could see him thinking about what comes next and he would get very upset if things were not done a certain way or in a routine. His social speech was next to nothing at this point although he would occasionally say hi or bye. Other than that if you didn’t want to test him on his numbers, letters, colours, shapes, read stories or play marble run… he had no time for you.
At two years old my boy regressed verbally, from previously saying mum, dad, hello, bye, this no longer happened, this is also where the tantrums started and these weren’t just tantrums you would usually see from a child at two, they could last anywhere from five minutes to over an hour, and they would tire him to the point of falling asleep…there was nothing I could do to get him out of them, I felt helpless. This was where I started to realise there was something going on. So about a week after his second birthday I rang my health visitor and told her that from what I had witnessed with him, I thought he may be autistic. I remember thinking… am I being over paranoid? But at that point I had done so much research into it I think I pretty much knew I had started the battle to obtain a diagnosis.
When on the phone to the health visitor, I’m not sure she took me very seriously or thought I knew what I was talking about because at that time I knew very little about autism. The process began with the ear and eye test first; at the time I remember thinking maybe his ears could be causing the speech delay but inside me there was this burning instinct that I knew I was right. Even though the test for his ears came back that he had glue ear, I still knew there was more to it, (the glue ear cleared up after three months). It didn’t explain why he would line his toys up in order and put them away in reverse order, or why he would obsess over letters and if he got one wrong when doing the alphabet he would go back to the beginning until he got it right, or why he didn’t like anybody in his personal space but he could invade others all he liked, or lastly why when he got excited about things he would flap his arms or if he didn’t like a noise he would clap his hands tightly over his ears. I needed answers to what I already knew, I just wanted to be able to help him.
After the ear and eyes we eventually got speech and language therapy and after two meetings in my home and one at my sons nursery, someone finally agreed with me, “I think you may be right, I think we should look into autism,” We were referred to a paediatrician who almost a year later finally said the words I had been longing to hear for reassurance I wasn’t going mad and justification to all of the things I had been so worried about, a little sentence that would help me to help my son “we are diagnosing him with ASD.”
YMCA North Tyneside are working with Verity on introducing a safe environment where parents and carers can openly talk about their own experience, with the intention of holding a monthly session at our Church Way location.
If you would be interested in attending one of the group sessions or simply have any questions or concerns you would like to raise, please contact Verity on firstname.lastname@example.org