My children returned to school this week after two weeks Spring break and as I look back at photographs of their time off I realised something very significant: I am now able to take my own children out of the house!
That may seem a strange thing to say to anyone who has never been where I (and thousands of other parents) have been, but I can assure you every school holiday there are parents of autistic children right around the world stuck at home unable to leave the house with their own children.
Back in July 2016 I wrote this post where I quoted families throughout Britain who were trapped at home unable to take their own children out. It wasn’t lazy parenting or just anxious mums or dads, there were very legitimate reasons why taking their autistic child (and siblings) out the safety of their own home was a huge challenge. To summarise the list of reasons included refusal to leave by the child, no awareness of danger, violence and unpredictable behaviour, sensory issues and public comments.
I was one of those parents.
I have two autistic children, one with huge anxiety and another with challenging behaviour and huge sensory needs. For my safety (and theirs) it was best we stayed inside our own bubble of safety at home.
So what changed? Less than two years later and I have photographs of my children at soft play, in shops, swimming and in the park during school holidays. I not only took them both out myself but we all had fun and I even managed to snap some pictures! What others take for granted since birth has taken me almost ten years to achieve…but I got there, and you can too.
So how did I get to where we are now?
1. I worked out my children’s sensory needs and played to them.
I watched them at home and took notes. It was very obvious both my children loved water. They would play happily with water and bubbles and they both loved a bath. That got me thinking about swimming. I called the pool to see when they were quiet and while they were at school I went myself and took pictures of the changing rooms, lockers and showers (I knew they would never use these but they still had to walk past them). We watched YouTube videos of children swimming and I let them try on arm bands and rubber rings.
Then one day I took them swimming. The changing and drying was, and still is, a bit challenging but they love being in the water. It was worth it. Finally we had one place I could take them!
2. I took account of their need for routine and worked around this.
My children do not cope with routine changes. However that meant I could not leave the house with them so something needed to change. I knew there were some parts to the day that were unmovable like bath time and meal times. We never go out after dinner as I know how anxious and distressed my son gets if he does not have a bath at 6pm. He is more amicable and open to change after breakfast so this is when I usually head out now. It’s what works for us and that’s fine.
3. I do the activity and then bring them back home.
First bowling then home. First library then home. They needed to learn to trust me and they needed to know they would always be brought back to their safe place. There was no sneaking into the supermarket while I had them out or popping into a friend’s house on the way home. Short trips keep their anxiety (and mine) much lower and gives them time to process where we have been and wind down from that. One thing at a time is a motto that works very well for us all.
4.iPads come too.
For my twins, and many other autistic children, technology is much more than just a solitary chill out activity. My non verbal son uses photographs on his iPad to communicate and they both use their tablets to zone out when things get too much. If that means they play a game on their tablet and stay sitting on a seat while the other child takes a turn at bowling then I am delighted. Having their iPad helps the transition, minimises the sensory overload and brings them comfort. If that’s what it takes to get out the house then so be it.
5. I involve the children and instantly reward them.
Good old fashioned bribery got us out the house! I remember taking my screaming son one day to the supermarket. He was anxious and annoyed I was taking him out the house but I knew the benefits to him would out-way his anxiety. He was safe and with me and I was monitoring his stress levels continually. I took him in for bananas and right back out again. On the drive home he ate a banana while flapping with excitement. Now he associates the supermarket with food (instant gratification) and I can take him in with me for short periods provided he gets something to eat in the car coming home. There is no wandering aisles stressing him and I take him at times the shop is quieter to minimise waiting. It works. There is one supermarket near me that he never ever wants food though and that’s because they have another massive motivator for him: a lift! He knows if he stays with me while I pick up milk he can watch the lift for a minute before home. It’s mutual benefits really. With my daughter a promise of a magazine or other small treat had the same effect.
They both now see so much benefit to leaving the house that on occasions they even suggest going places before I do!
It took time and patience. I needed to take a risk and do it. It involved planning, risk assessment and sometimes having another adult with me, but we got there.
Like so many thousands of parents of autistic children I found myself staying home all day everyday because my children refused to leave the house, their lack of danger awareness scared me, their sensory issues were so high and I was worried about what people would say.
My children still have no awareness of danger. They still (and always will) have autism. They still have high sensory needs and I still get comments and stares from the public.
The difference is now we just go out and have fun anyway!
It wasn’t easy. It took time and patience. Today I can leave the house with both my autistic children on my own. I am proud of myself but I am ever prouder of both of them.
If you don’t feel you can leave the house with your autistic child can I tell you just one thing: There is hope.
It is most definitely worth it. You need out and the world needs to see both you and your amazing autistic children.