What a difference a year makes

NOTE  Please be aware the videos contained within this post were made with the intention of being shown to the professionals who support Zachary, specifically Speech and Language, but alas here we are. I apologise for the mud on his face in the first video and the lack of trousers (pants for any Americans reading this) in the second video, typically he had just spilled water all down his trousers before I started filming. I would like to add I do regularly clean and dress my children 

What a difference a year makes. A year in any child’s life is huge, not just in a child who has autism. A year ago we finally got someone to take us seriously about our concerns for Zachary. I had been attending my local Surestart children’s centre. We went to 2 groups for 1 hour per session twice a week. The staff were amazing, Zachary adored going there. He was an energetic little boy who loved running up and down the corridors on his tip toes, who didn’t like to sit for snack time or song time and was a little obsessed with trains.

One day I asked one of the staff if I could talk to her after one of the sessions had finished. I sat with her and out flooded all my concerns, his speech, his eating, his excessive running, jumping, climbing, his obsession with trains, the way he played, his sleeping or should I say lack of. I spoke to her about the impact it was having on our family and the fact that I felt completely alone. Everyone I spoke to just kept saying he was an energetic little boy, that his speech would follow and so what if he liked trains, is that really a bad thing? They kept telling me he was a normal two and a half year old little boy. I didn’t believe it, I couldn’t believe. Either there was something more going on or I wasn’t fit to be his mother. It wasn’t fair on anyone.

I will be eternally grateful to the staff member (Shabana) she sat with me, she listened, she gave me tissues to wipe away the tears. She told me she knew that Zachary was displaying some ‘red flag’ behaviours, but she didn’t realise how bad it was at home. I was spending a minimum of 2 hours a night lying in the dark in his bed with him EVERY night, where I was unable to make any form of contact with him, even eye contact, but if I attempted to leave before he was asleep, all hell broke loose.

We were awaiting Zachary 2 year old development check with his health visitor. Shabana and I made some calls and raised our concerns and we arranged that he would be given the SOG check, It’s a more in depth check as far as I am aware. When his appointment came around, we went into the room and he was being pretty well behaved. Although he did keep trying to escape, he wouldn’t even look at the assessing nursery nurse. He only spoke about Thomas the tank engine, he really struggled to listen and pay attention and complete any of the activities apart from the 4 piece jigsaw. He couldn’t match the colours, or even follow the instruction to place something on top of something else, even with a demonstration. When the time came to get the little doll out and her accessories, a shoe, brush, toothbrush and cup. She couldn’t even get him to sit at the table or engage with her. For me though he was actually being pretty well behaved, even though at times he did just lie on the floor or start running and running and running ignoring everything that was said to him at least he wasn’t screaming.

After the assessment and  a discussion about his behaviours at home and a the play groups. We were given this form.

 

The grey pencil line shows where he should have been and the circles show where he was for things such as locomotion (physicality), speech and language, hearing and language,self care and social interaction. You can see here he was around 6-12 months behind in most areas. Lowest performing area was his hearing and language. His highest performing area was his physicality, no surprises there. I remember the lady who assessed him saying that I had done the right thing. She said she had an idea of what was wrong, but it was not her job to diagnose.

This bit of paper opened up so many doors for us. We were able to attend Special Educational Needs groups, we got a speech and language referral, this got us through to the paediatrician which got us through to physiotherapy which meant Zachary got his bi lateral casts and then onto Occupational Therapy and his Sensory processing disorder diagnosis, it meant we got a Family support worker, and an early years support worker which got an Individual educational plan in place for him, we got his Child development centre referral and ultimately his Autism Spectrum Disorder diagnosis. It might not sound like much, but its been a busy, busy year filled with appointments.

Zachary doesn’t have all these people involved with him now, some services he has been discharged from and some he has just become a part of. Services such as the speech and language and the occupational therapy, they discharge him, giving us specific targets he needs to meet, we work on these at home and in nursery and once he meets these requirements, he gets referred again, they assess and give us his new targets and then they discharge him and the process continues. People always talk about how important early intervention is and when we went to his diagnosis meeting they commented on how much he had already had and how much you could see as he has developed so well.

The video below •ZACHARY: APRIL 2014• Is a short snippet into Zachary’s world then. He struggles to make minimal eye contact, he doesn’t understand the questions he is being asked. He is responding with answers to do with Thomas the tank engine, which at the time was, what is known as his special interest. If you look closely you can see that he appears to be in his own little world. You will also notice that he smiles a lot and is a happy little boy.

 

Fast forward 12 whole months and wow, what a difference! In the video •ZACHARY: APRIL 2015• he is making eye contact almost the whole way through, he is trying so hard to respond appropriately and does manage it on occasion.

You can see he is learning to use his imaginary play and is trying to extend what he does. He also used the phrase “biggest ever” we have been working on the concept of big and small/little daily both at home and at nursery and it looks like it is paying off. The thing I love the most is how much he engages and that he isn’t stuck in his own little world anymore. Don’t get me wrong, he zones out at various points through out the day, but that level of engagement gives me so much hope for the future. As a parent with a child with autism no matter how ‘mild’ hope is what we live for and hope is what keeps us sane. So these tiny snippets show how my boy has grown and I can’t wait till next year to see where he is. For now my plan is not to worry what lies ahead tomorrow but to enjoy today.

Thanks for reading

Cherrysnotmyname 🍒

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