Parenting the ASD child
The amazing interview with Emma
As part of my ongoing research I spent time doing an interview with Emma – a mum who understands fully what it means to be parenting the ASD child, with additional needs and behavioural difficulties.
Emma kindly agreed to exchange a coffee for her experience of parenting an ASD child, and I spent some time with finding out how life is like for her. She told me that she hopes that it will help other parents to feel less alone, and know that there is support and training out there to help them.
Emma is mum to Sam. Sam is 12 years old and has ASD and Neuro-developmental disorder. He also has elements of Tourettes, visual issues and a facial tick.
How did you feel when you first found out that Sam had additional needs?
I actually didn’t know what ASD was. I thought that his behaviour was normal for a 4 year old. Other people had told me that they thought he had ADHD but I didn’t believe them.
I had absolutely no idea how bad it was going to get!
What behaviours have you had to manage due to Sam’s ASD and additional needs?
Oh gosh – so many!
We regularly get swearing, spitting, damaging things, aggression and anxiety. He often refuses to get on the school bus, or go to school, and he has lots of physical ailments – tummy aches, headaches etc.
He cannot manage any instructions which are not carefully broken into individual tasks, so I always have to be mindful of what I say. He is constantly distracted when trying to accomplish anything, he goes off to get his shoes and somehow ends up the other end of the house!
He has food issues – he is gluten intolerant, and his medication stops his appetite. He has recently started trying to cook in the middle of the night because that is when he is hungry! I actually have to make him a night picnic so he doesn’t burn the house down!
His sleep is the biggest issue. He is frequently up for several hours during the night. When he is asleep he shouts out every night.
The pre-medication hour in the morning can be exhausting. We have to battle to get him to take his medication, and often have several melt-downs before it takes effect.
He used to run off, thankfully this doesn’t happen anymore but he still packs his bags to move out when he cannot process discipline.
What’s been the hardest bits for you?
Living with it daily and the battles over behaviour. There are moments when I just don’t think I can do it and break down in tears. It can leave me exhausted, some days I feel like a 90 year old!
One of Sam’s conditions affects his empathy so if he ever see’s me upset he doesn’t show any understanding or care. It’s not his fault but it makes it hard.
Because he is a night-shift child I have to go to bed early so that I’m able to manage, and I don’t really go out anymore as it makes him so anxious.
What has been the hardest bit for Sam?
I’ve also had to fight to get Sam the support he needs, he was excluded from school before he got his specialist place.
I think it’s all hard for Sam. He doesn’t understand how to control his emotions and that makes him react inappropriately to so many situations. He has sensory issues so he is easily overwhelmed.
When he was younger he couldn’t make friends as the other children didn’t want to play with him. That upset me a lot at the time.
Since starting a special school he has made friends as they understand each other a lot more.
He doesn’t really play with many children locally as they don’t understand him as much. The parents can be really unkind as well, making comments about his language.
Have you ever felt judged?
Yes! When he was little I felt judged a lot!
I had to learn to deal with it without paying attention to what other people think.
When Sam is having a meltdown I have to stay calm to help him to regulate his emotions. If I am worried about what onlookers think that makes it worse for him.
When a trigger appears we just have to deal with it, no matter where we are, or who is looking!
What do you worry about?
I used to worry a lot, but there was so much to worry about that I had to teach myself not to!
After I built a support network of parents in similar situations it became easier. Together we would be able to find the funny side of the situations we have to deal with.
If we didn’t laugh we would cry!
What was the biggest turning point for you?
It was really when I started to learn more about his conditions and how to manage his behaviours. I went to conferences and training days, and completed a safer handling course. Sam can be very aggressive when he is having a meltdown. Learning how to physically handle him safely for both of us meant I could take charge of situations which I was previously worried would get out of control. He feels safer knowing that I can keep him emotionally contained.
Support for ASD families
How much support was available to help you with behaviour?
To start with none. He was diagnosed and medicated, and then a year passed with no support or intervention. It wasn’t until his behaviours at school got really bad that the parent support advisor referred me to an organisation which helped me to understand his conditions, and what to expect from him.
Where would you be now if you hadn’t been able to access support?
I wouldn’t be confident with managing his behaviours, or have the support for me. I think I would be very isolated. Learning how to manage his behaviours means I can keep me and Sam safe.
What is your biggest issue now?
His EHC plan. I am about to try and take the local authority to tribunal because his plan is almost empty, despite him having quite complex needs.
The area I live in has a very poor system of support for SEN children. I am lucky that he got a special school place, I believe there are many children in our area who just can’t get one, and their children just get excluded from mainstream schools.
I feel he has been let down with his care plan, his teachers have been unaware of his needs and that means they can’t manage him correctly.
What would you say to other parents who are struggling with their child’s behaviours?
I would tell them that the need to get some training or coaching. The more you can learn about how to manage their behaviours the easier you will find it to cope, and the better you will be able to help your child.
You’ll need a support network, that is key to emotionally taking care of yourself. When you share with others who understand it feels so much easier.
What do you think of the service that Empowered Parents is offering?
I think it’s amazing, I just wish it had been around when I first needed support! I had to wait for the referral process and for the organisation to have capacity to work with me. If I could have invested to get training earlier it would have made life so much better for me and Sam.
The way the programme uses a strategy set ystem for managing behaviour really allows parents to focus their energy (whatever is left!) on nurturing their child. That really helps the child to feel safe, and they can start learning how to manage emotions and behaviours.
The fact that you get ongoing support whilst you start using the programme is great, it means if you are unsure how to use a technique, or if you’re getting it right, you have a coach to speak to.
If Emma’s story has connected with you, and you’d like to access support and training, contact us today to discuss how we can support you.
Alternatively, you can access information and advice from some of the many support sites available, including the Autism Support Network.
Overall – if you are parenting the ASD child, you are not alone! There is support available through free and paid for services, and local networks in your area.