enigma wrapped……

Tam like any child with autism that is non verbal (or minimally verbal) is difficult to read. I often describe as “an enigma wrapped in a mystery stuffed in an envelope and packed into a crate”. No matter how I can read some of Tams behaviours and find ways to comfort him there is always a time when every thing I think and every action I take does not work and misses the mark that Tam needs me to find. This is frustrating for both of us.

I spend 3 times the energy trying to understand what is going on with Tam and his reactions to things as I used to when Bev was here. I have a lot more to take into account as well. Before Bev died Tam had both of us to see things from different perspectives and he always had one of us rested and calm. Now all of his focus is on me and all of my focus is on him. There are things that only Bev or a mother could do that I cannot. This makes life harder.

I try to remind myself that time will help and that currently all things are still new and raw. He is dealing with so much still and so am I. On good days we pull each other up and have a good day and we build memories. On a bad day we at best we struggle around each other and on a really bad day we wind each other up to a breaking point and then both cry. Those bad days normally lead to good days. Kind of the cork in the bottle popping.

Grief, PTSD, autism, non verbal is a bad mix. It creates walls and barriers to understanding. It puts a barrier up to being able to comfort Tam. So, all I can do is show Tam all the love I have and try to make sure he understands that Daddy will help all he can.

Maybe in the next few years I will read this blog and wonder how we made it. Maybe Tam will read it out to me and understand how hard a time we had. Maybe we will read it together and we will realise that Mammy would be proud of us. I certainly hope so.

For now its Sunday afternoon and I have spent days preparing to get Tam back to school. We have had moaning, crying and a few angry breakdowns. I have tried to administer a new drug to help Tam to calm but I have been a bit of fool thinking that I could get Tam to take a tablet when he is in an angry breakdown. The problem is that there is too short a warning period for his angry breakdowns. Asking him to take a tablet only ended up with accelerating the breakdown.

As Bev would say “its time for a rethink and a fresh start”. Make a few phone calls tomorrow and see if there is a liquid form of the drug, even though that might be just as hard to give Tam.

Rest of the day priorities, maintain the calm we have while we can, bath for Tam, bed, sleep, breakfast, dressed and school. Wish me luck.

Alan & Tam

And the tears roll down my swollen cheek, think I’m losing it, getting weaker, I hold the line

Peter Gabriel, San Jancinto

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