Is it Autism?
From around three years old I knew there was something different about Jake. We would go to the local play group and Jake would play on his own, if other children approached, he would walk away – I would smile at the other mums and try to get Jake to go back to them, but he would just get upset. I noticed other things like he covered his ears when I used the hairdryer and that he didn’t come up to me and show me things like his sister did. When he started school, I approached the SENCO for help who referred us to a Paediatrician.
The Paediatrician was great and really listened to us. She suggested that Jake was placed on a waiting list for an Autism assessment. There it was, that word, Autism. This wasn’t a surprise to me, I had started to look online and when I typed in the things Jake did Autism came up a lot. I wasn’t shocked, but it definitely felt more real when the Paediatrician said it out loud. My brain filled with questions ‘What does this mean for Jake?’ ‘Will he go to the same school as his sister?’ ‘What will his life look like?’ As a family we understood there was a long wait for an NHS assessment, so we went private.
When things started to make sense
We went for Jake’s assessment and as we were now expecting, he received a diagnosis of Autism. Jake was five years old when he received his diagnosis. I had even more questions but fortunately the Occupational Therapist and Speech and Language Therapist who had done the assessment helped answer them. Jake could communicate so I didn’t feel that Speech and Language Therapy was right for us at the time, but we had noticed a number of sensory needs so booked some follow up sessions with the Occupational Therapist to understand this more.
We had three sessions with the OT learning about sensory processing, co-regulation, meltdowns and shutdowns and how to make adjustments and strategies that could help Jake. We learnt more about Autism and how Jake really relies on routine and predictability to get through the day. We did go back for some Speech and Language therapy sessions to learn more about Autistic communication – I stopped asking Jake to look at me when I spoke with him, understood that for him to share with me I would have to ask a question as well as understanding the joy it brought him to be able to tell us about whale sharks…. Uninterrupted and at length!
Life now…..
When we first started our journey, we had no idea about Autism. Our perception of what a diagnosis would mean for Jake was far from the reality of our life these days. Now Jake is 10 – he goes to Scouts, he plays computer games with his best friend, he knows every fact about Manchester United, and he still loves whale sharks! We still go on holiday, go to theme parks, play football in the park but we do them our way with schedules, timers and routines. We might not be able to do things in the same way that other families do but we get it now that it is ok for us to do things differently and in a way that works for us.
Things aren’t always easy – School is challenging for Jake, and it has taken a long time to get the right support for him in the classroom. Friendships are tricky – he has one very best friend who completely understands him but interactions with others are hard if he misses the joke or someone doesn’t see things from his point of view. The sensory processing needs will always be there – Jake now uses noise cancelling headphones, he wears a school sweatshirt instead of a knitted jumper and having his hair cut remains extremely uncomfortable for him. We know now that before we go anywhere, we have to tell Jake exactly what we are doing and show him pictures or videos and give him an itinerary which we have to follow – there is no room for spontaneity or surprises.
We know that meltdowns will still happen, but we do our best to try and make sure they don’t happen often. We embrace Jake’s special interests and are in awe with how much he can remember! We know that chicken nuggets and cheesy pasta isn’t the most balanced diet, but we know he will eat it and we have made peace with that – we still offer the broccoli but don’t worry when it gets declined! We accept now that Jake is just Jake and our life is our life. We take the good days and we work through the hard days together.
Things I have learned along the way
- Every Autistic child is different – how one child experiences Autism is not the same as another!
- Autistic communication is still communication
- Meltdowns are not tantrums, they are a response to feeling completely overwhelmed
- If you say you are going to do something, you have to do it! Jake won’t let us forget!
- There are good days and hard days. What works one week might not work the next
- Find your Community- connecting with other parents of Autistic children has been so helpful to us
- You know your child best – don’t be afraid to tell people how it is
- Sensory processing needs are real!
- When a strategy is working well don’t change it, things are probably working well because of the strategy!
- And Finally…… Whale Sharks are the largest living fish species in the sea!
More information
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