When you’re pregnant you always imagine what your baby will be like, you have this whole future planned out for them. You never really put into that plan anything you don’t see as the perfect life for them. They’ll be smart, go to university, support dad’s football team, enjoy the same music as mum, have the best job and definitely make you grandparents. What do you do when all these hopes and dreams seem to then become impossible?
Just before her 3rd birthday my daughter Amber was diagnosed with Autistic Spectrum Disorder. We noticed that she wasn’t hitting milestones in the red book you get when they’re born. We filled in the space for crawling, first teeth and walking, but the first word was left blank as was weaning. “Mamma” and dada” never passed her lips and she just wouldn’t take to lumpy food.
After a lot of talking and help from pre-school nursery she was referred to the complex communications team at St George’s. You do a lot of talking about how she behaves things she does or doesn’t like, but you aren’t quite sure how these things are relevant. You sit through the assessment and watch her be tested. Then comes the follow up and it’s confirmed that Amber is indeed Autistic.
My first thought was, OK so how do we help her? Questions about the future aren’t able to be answered so you leave the appointment feeling more uncertain then when you started the whole thing.
There’s a good reason, there’s no set pattern to autism or how it presents itself. It depends on keeping up constantly the methods given by specialists. It’s basically all on you as parents – use small sentences, encourage eye contact, use intensive interaction, look out for triggers for meltdowns, work out how to prevent a meltdown, work out how to make meltdowns shorter (if you didn’t catch the trigger before it happened), keep sleep diaries, behaviour diaries, stick to a strict routine and try not to change it too much. Work out the best way for her to learn numbers/colours/shapes. Learn the pecs (picture exchange communication, it’s a fine art!). Accept that one simple task may take months of work and that’s even if you do it everyday. You have to have the patience of a saint. You’re no longer just a parent you are a speech therapist, behaviour manager, special needs teacher and occupational play therapist too.
I’m not going to lie – it’s pretty daunting. Not only do you do all of the above yourself, but the rest of the family do too. Amber has two older brothers. Explaining that their sister was autistic was quite hard. When they see her doing things that they wouldn’t get away with it can appear that us parents are treating her as a favourite and they noticed this. Of course at first they found it unfair “Mum she’s throwing things around you need to tell her off!”, “Why doesn’t Amber get in trouble for hitting cos I’m not allowed!”.
I should point out Amber hits not out of anger, but frustration, she is exceptionally strong. I worried for a while that the difference between her and her siblings may have a negative effect on them, but now they boys totally understand and are as clued up as us.
She has a brother 2 years older and one day Amber had a total meltdown, she hit me and him and was very distressed, her brother’s reaction totally melted my heart. He took her hand and told her it was OK, brought down her favourite teddy and then asked her to come with him. He then took her to his bed, put her teddy in and stroked her head until she was calm. He then came down and simply said “It’s OK mum, I’ve sorted her”. After that I realised her brothers were as remarkable as Amber is.
Any autism parent will tell you that you can feel extremely guilty and unsure if you’re doing the right thing. Guilty, because she hits her brothers and we all have to revolve around her routine and behaviours. Unsure if your doing things right, there’s no cause found for autism and likewise no cure which means not as much information is stamped in stone so everything is “try it and see”. Am I getting the balance right between allowing her autism and adjusting some autistic behaviours. It can at times feel you’re suppressing her natural instincts so that she conforms to what is “normal”.
Living with autism brings out emotions you didn’t know you had, tiredness like you wouldn’t believe, again I’ll say the patience of a saint. You find your voice as you meet and deal with lots of different people with regard to your child’s care, but most of all you find joy in the smallest achievements. Your expectations don’t drop mind you, but you realise how simply putting a ponytail in Amber’s hair can feel like lifting the world cup!
This article was written by Christine Robinson-Perkins using our Community Reporters website
This is a great piece. The bit about Amber’s older brother is particularly moving. Thanks for sharing it with us.
Sounds like you’re doing a brilliant job and Amber and her brothers are little stars. Hope you can access any support you need.