‘Behaviors of concern’, ‘challenging behaviours’, whatever the term that floats around different professionals, there’s one thing for sure…everyone involved in the process of how those challenges manifest is affected.
Recently we have been brought to the stark realisation that personal care for our autistic and severely learning disabled six year old son is a 2:1 requirement. It has been at school for some time and it has now followed at home.
My husband used to work in London with some overnighters when the children were younger. When I think about how I would manage if that were still the case now, it takes the breath from my lungs. I simply could not manage, not for a day. One positive of Covid-19 in my family is remote working for Dad. As we gradually come out of restrictions we are lucky that there will not be a full time return to the office. When I need a hand, unless there is a conference call then can’t be gotten out of, I have my team mate, my soul mate, my husband. And we have never been more of a team in our decade of marriage than we are right now.
One of us deals with the nappy changing, the other protects the nappy changer from hits, kicks and bites.
At the crux of these behaviours that challenge, its really important that we remember – before we are challenged our son is challenged first, every time. Something in his environment is too much for him and it causes him to overload.
It is not his fault. Grayson has sensory modulation disorder, a subsection of sensory processing disorder and this makes physical touch that is a) not deep pressure proprioceptive compression type squeezes and b) touch that is not on his terms extremely distressing. Yet personal care is unavoidable. We have to keep our son clean.
We have measures in place. A sensory diet that is followed to help keep his central nervous system ticking, to keep him within his sensory window of tolerance in readiness for any episode of personal care. We use warm, re-usable wipes in case the coldness of babywipes upsets him. We use visuals to support his understanding. But even with all of these measures, a nappy or outfit change could see you emerge with a huge bite mark in your arm for days to come.
Afterwards Grayson is always remorseful, he squeezes me tight but this time in a cuddle, he tells me wordlessly that he is sorry and that he loves me, and I hold him right back and rock him back and forth. I breathe in and out, mirroring his rhythm until it slows and we have calm. When he is close to me like this and I can feel the beat of his heart, when he has stopped hurting me and is full of love and warmth I could stay that way forever, safe in our bubble. We are frozen in time son, you and I. Still singing the same lullabies to you as I did when you fit neatly inside my arms. I imagine us still sitting together rocking back and forth in a cuddle, still singing those same lullabies when you are fifteen and thirty.
I make this promise to my son. Your Dad and I, we will never stop reading, researching, learning, speaking to peers and reaching out to professionals. We will never give up on our quest to fully understand your needs and challenges and more importantly how we can help you through them. We will never think ill of you for expressing yourself. Your behaviour is all communication. It is our job to learn your language. Some day, we will be expeets, I promise you. Until that day we will work, every sibgle day on doing better than we did the day before.
Beautiful Caterpillar 