I can’t even describe how I felt at the time before I met Family Action… I was heartbroken, upset, frustrated… It was a profoundly difficult time.
Claire’s son’s neurodivergence brought daily challenges for the family, but finding support and connection through Family Action made all the difference. At a Christmas Toy Appeal event, their son chose gifts for the whole family, including a simple box of hot chocolate for his dad that meant so much and was a reminder that the support was helping the whole family.
My son has PDA, which is a type of Autism. It stands for Pathological Demand Avoidance, which is funny as children with PDA might not be able to cope with demands, but they are flipping demand of you!
PDA means that any demand, even brushing your teeth, is too much so all that domestic stuff was hideous. He is such an intelligent, lovely boy but due to the pressure he felt he would often try to run away or, if he was at school, set off the fire alarms. It was horrendous.
Eventually I had to take time off work because we had to take our son out of school, and we had zero provision for looking after him. Now I’m with my son 24/7 and it can be absolute hell… I really want to go to work, and I want a break.
My husband was also angry and frustrated as he was going off to work and it was upsetting to hear me upset. It put him under a lot of pressure every day.
When I first spoke to Family Action, I instantly felt really pleased because they knew so much about PDA. They told me about a course I was keen to do about low demand parenting. I also saw that they were running a drop in for diagnosed and undiagnosed children with NDD (neurodevelopmental disorders) I was, like, “yes!”
They also ran a Plan Bee course that was three sessions in my town – the course explored what neurodivergence is and gave strategies to parents, as well as providing the opportunity to meet other parents who were going through the same situation.
I kept saying to my husband “We’re not alone. There are other people… and they live locally!"
Finding the right support
The thing is, I am fortunate. I’ve got loads of friends who are really supportive… but they don’t really know what it’s like, not really.
Now I go to the drop-ins once a month, when I went last month, everything was falling apart again, as we haven’t been given the provision we need – luckily the people at the group looked at resources and other alternative provisions to help us out.
When Family Action ran a Toy Appeal event last year my son didn’t want to go but I took his tablet and everything and I put him in a pushchair so he could be invisible.
When it came to picking his gift, he really struggled, but Claire at the service picked up on those struggles and said he can have more than one if that helps.
Love from the Toy Appeal
He picked two things; some stretch bands and some putty, as they’re both very tactile, and that’s something he seeks out and needs a lot of.
Also, he got to pick gifts for the rest of us – a mindful colouring book for his sister and a hot chocolate selection box for daddy. What was funny was that my husband REALLY loved the hot chocolate. I was really taken aback, and thought “it’s only hot chocolate”.
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