Hayden’s Speech has been the biggest challenge for us with regards to his autism. I cannot help but think every other behaviour we have problems with would be so much easier to handle if we had the beauty of communication. I don’t mean I expect in depth conversations on why he doesn’t want to go to bed, or why he persistently wee’s on the carpet. But knowing he has understanding of what we are saying or even him being able to share how he feels to some level, would make things a lot easier at home.
If you have followed our story you will know Hayden followed a very ‘normal’ development process in his very early years. By the time he was 2, he was joining two words and was able to name many things. His noun vocabulary was wide and we had no reason to question his speech development. That was until the words just stopped. He could name about 20 items, but compared to his 100+ just a few short months before, it became an issue quickly. We found it hard to differentiate between tantrums/meltdowns and just pure frustration he could no longer express his wants or needs without screaming.
Over time his noun vocabulary once again increased, at a very slow rate and has always been considered limited for his age group. There were many immature pronunciations creeping in. Purple became ‘Purya’, mummy became ‘muyee’ and cuddle became ‘cuya’. It was incredibly frustrating to experience, especially when at the time even though deep down we knew autism was a possibility, we were constantly told by professionals that he was no way autistic.
We have always found SALT (speech and language therapy) quite frustrating, it is hard to express clearly where Hayden is with regards to a neuro-typical development because we simply have no prior experience, yet struggle to see how someone can make judgement after an hour appointment or observation. Many therapists we have come into contact with have frustrated and annoyed us, but nothing like what we are currently experiencing. I would say the whole system is flawed, yet my experiences with Ellis and SALT have been a lot more productive and effective.
When we met our current therapist, she was so lovely. She made comments and listened hard to what we had to say. We explained how Hayden could say many single words, not always clearly but the basic vocabulary was there. We told her of our previous experiences and what has/hasn’t worked. She then said she would do most of her observations in the school setting but was always happy for a home or clinic visit. We had a couple of other observations to go through, but from that point I knew her main point of call would be the school. Her initial idea was to implement a system called PECs but I had my concerns that it would cause Hayden to become lazy. The TA at the time had little support so the whole PECS system was not being implemented properly. There was too much focus on an individual picture card (bubbles) and little else. It was then decided Hayden had enough speech to try and focus on developing his language rather than using images. If only they had listened in the first place.
From that point observations seemed to disappear. There was so much promise that once he started in reception he would get a lot more support surrounding his language skills. This hasn’t really been forthcoming. There was an observation in the first term, but it took place on a particularly bad day, Hayden was tired, his 1:1 was off sick, he had school photo’s that day and there was very little sign of any cooperation from him. It was an hour spent blowing bubbles. And that is the last observation that happened. The school stressed to me they were a little lost with what to try so I asked to speak to the lady that see’s Ellis every couple of weeks in pre school. She is head of the speech and language department so knew expressing my concerns to her would force some action.
It just so happened that morning, Hayden’s teacher made me aware our therapist had phoned the previous day to arrange her next observation visit, which would take place the following week. I still spoke to the boss expressing my concerns about the lack of support, but said I would try and speak to our therapist myself about maybe having a clinic appointment alongside her school appointment so I could share my thoughts.
The following week I asked the school how he had got on, but nobody seemed to know anything. I spoke to the SENCO who advised me she had expressed concern for the lack of development in the past 6 months. She had also sent me a letter saying she had tried to call me. Yet, I have told her 4 times I don’t answer unknown numbers so to leave me a voicemail and I shall call her back as soon as I can.
I will admit I haven’t called her. But I am angry. Angry that she can make that assumption. I am also angry that without any support or guidance from her, how is progress going to be made? I need to calm down before I make that phone call. I need the think carefully about what I want to express and where I need to focus my attention.
Hayden’s speech has actually improved massively over the past 6 months. There is more copying than there has ever been and he is trying to form sentences. I very rarely understand the sentences but when I do the pride and accomplishment in his face is enough to melt my heart. He is trying and we are trying, but without the experts support and guidance how are we supposed to progress any further or quicker?
I always expected to receive so much more support, guidance and assistance once we obtained a diagnosis, I didn’t expect to have to fight, pester and badger people for it all.