Navigating Life On The Spectrum

Finding out that Ashy was on the spectrum honestly wasn't too much of a surprise for us. Still, hearing the words definitely does have an impact - not just for us, but for his siblings and other family members as well.

We never actually saw Ashy as “special needs” - he was just different and quirky. It's learning how to adapt and help him feel like he's more part of the family, rather than feel like he's an outsider; not really fitting in with the family.

It can be quite tricky trying to find time to put that extra effort in, but it's important to have a strong family to help support you when there are things like therapy sessions.

We make sure that we do things like routine. Ashy has a routine, I've got all the other kids into a routine, and I’m now a sucker to make sure that I like to have my life in a routine. Those sorts of things were challenging to start with, but now it's just day to day.

We have our set times, we have alarms set up around the house, I have numerous ones on my phone. We have Google Home that gives us cues - things like it's time for bed. Even just five minutes to stop, reassess, and pull ourselves back in the right direction when it can be chaotic. It is definitely needed, especially when you have a house as full as ours.

Ashton was just under two years old when we thought he was a little different to his siblings. There is autism in the family, so we knew how to pick up some of the little traits. Then, it was waiting to get him into speech therapy and occupational therapy, getting referrals, etc. It can be quite daunting with the amount of people you have to go and see.

Once we started occupational therapy and speech therapy, the difference in him was amazing. Not just for him, but for us as a family as well; to better communicate and know how to help Ashy around the house.

As a parent, when your child gets upset, the first thing you want to do is make them feel better - but if your child can't express why they feel upset, because they don't know, it can be quite upsetting and daunting.

This can make you feel stressed - and they'll pick up straight away that you're feeling stressed, which makes it worse for them. It’s been great having Arisse help us work out ways to understand him and for him to understand us as well.

It's the little things - like when they say a simple word like “mum”. It makes you feel like you're doing the right thing. It can be quite difficult, but it's worthwhile for the simple things like him having friends or the sorts of skills that other kids find quite easy.

Ash used to find these things quite difficult and would stay in his own little bubble. Now, he is quite happy to let anybody he trusts into his world. For a kid on the spectrum, if they let you into their world, you take that as the biggest compliment because they won't just let anybody in.

Therapy sessions are only half an hour a week, or an hour. It's not very long, so they teach you the strategies to use at home. The slightest little thing that they teach you - you just make sure you try and implement it at home. Once you see the difference it makes for them, it makes it easier for you, and it makes it so much easier to keep going. Just a small thing that they recommend can make the biggest difference at home and make it a hell of a lot less stressful - for not only them but for you as well.

It can be quite daunting when you hear the words from the paediatrician, "yes, he is on the spectrum"; knowing things will be more difficult for him.

Our OT realised that Ash is a visual learner. For him, he doesn't quite process things if you just tell him something. So, writing it down and giving him visual cues to recognise doing “this first” and then he can “do this” has helped a lot.

We put a whiteboard on our fridge so that he can either write or draw what he wants on the board. That way, if he can't tell us, he can show us what he wants.

When he was learning how to do sign language (when he was first learning to talk), having the symbols up on the fridge so he could see them - those sorts of things have been amazing to help make things easier at home.

I can't say it enough, but repetition is so amazing. Especially for kids on the spectrum. Once they learn something, it sticks and almost loops. Once they get into the habit of something, they always stick with it.

They highly encourage bringing family members to therapy sessions, so I always have his siblings with me. If it's not one, it's quite a few - so it can be quite crowded. But, Arisse always turns around and goes, “the more the merrier!". She doesn't just focus on Ash, but what we can do to help Ash and involve the siblings. This has been great, because they can chat to her about what they can do to help. She will explain to them how his mind works and what works well for him.

For example, if Ash gets too emotional, they now know that sometimes they need to take a few steps back for him to regulate himself a bit. Then, he's quite happy for them to re-engage. Whereas, when he was quite little, they would try and play with him and it would bring him into sensory overload because he didn't want anybody in his "bubble" - as we put it at home.

Now he's quite happy to have his brothers come into his bubble, but they also understand from learning from Arisse - that when it gets too much, what Ashy's cues are and that sometimes they need to take a step back.

My biggest advice would be to not be afraid to vent any of your worries or questions to your therapist; they are there to help you. I flood my therapist with as many questions as possible!

Another big thing would be to listen to what they say - and to make sure to implement it at home. Don't just get your immediate family members, but get aunts, uncles, friends... get everyone involved as well. It honestly makes a world of difference, because not only do you learn how to adapt better for them, but they also learn how to adapt in the “normal life” with everybody else. ​

Arisse has been amazing, not only with our family but even talking with Ashton's school - so the teachers can learn about Ashy's ways. This has been amazing and some therapists may not do that, but Arisse goes above and beyond.

He finds it hard to concentrate on things, so having things like fidget toys, or something small that he can play with, helps him to focus. You may think, "well if he’s fidgeting, he's not focusing", but it actually helps so much. While they're doing something, their mind can focus and realign itself on the task at hand.

Find out what your child is passionate about. Ash has gone through many phases of things he's obsessed with. We've gone from the Trolls movie to movie themes, where it's just the first 20 seconds of 20th Century Fox - and that used to be on repeat for hours upon hours.

If they are starting to get upset, showing them something that they're really passionate about (and kids on the spectrum get hyper-focused and extremely passionate about certain things), can make them change from a meltdown to something that makes them happy.

Those sorts of things can make a big difference, especially when they're not quite sure why they're upset. If it is a sensory meltdown, the best thing to do, I've found, is to sit close by so that he knows I'm there.

I won't invade his space, because he doesn't want anybody in his space. I'm there when he is ready to engage me. This way he knows that I don't understand why he is upset, but I do want him to know that I'm there when he is ready. He will come over once he's cried it all out and I will give him a tight hug. He likes the pressure - it helps him.

When he used to have his sensory meltdowns, my first instinct was to go up and give him a hug - and that would just send him into meltdown mode even more. Arisse taught me the strategies - to make sure that he knows I'm there, but I will wait for him to come to me. Just them knowing that you're there can make a world of difference for them.

One of the difficulties we've had is learning what affects Ash and how it affects him. For example, when he goes outside, sunlight can be too bright for him. So we've realised that he needs to have his sunglasses on.

When we would go to the shopping centre, Ash would cry and get upset. It made it really difficult. We realised the fluorescent lights would make him feel like he had a headache, so sunglasses inside made a world of difference. He liked to sit in the trolley, but a lot of the different sounds would overwhelm him. So we learnt to use headphones - but because he didn't like it being quiet we now play his favourite music.

At the supermarket, you'll see him sitting in his trolley, music playing in his ears, sunglasses on, and he's quite content and happy to go shopping for ages.

Arisse is amazing when it comes to working out how to best support your child. Not only for your child who has special needs and needs different strategies for daily life, but she also helps the parents and other family members as well.

It’s not just focusing on Ash - it's about how we can work as a family to make it more peaceful, and less stressful; working out that it's not special needs - it’s how we can help everybody's needs to make it more special in the family.

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