Category: A Dads care …

If there is one thing that lifts my spirits, it is when the story of our family journey is heard by someone who takes something from it, and it makes their own journey a little more bearable.

I have spoken before of the echoes of people on this lonely road. A road less travelled but up ahead there are those who have experienced that little bit more, and if we share our awareness, some on this same journey behind us will hear our own echoes. And maybe, it will help them.

I was able to share our experience with the National Autistic Society once again and a family has something new to consider. My response will be published in their next magazine for a wider audience to read.

We try to make our footsteps clear, so that others my see them.

We grasp the opportunities and take an adventure. To stimulate our minds and capture new memories. The time is right and ensuring all care is maintained, we are acting upon it.

“Think of all the beauty still left around you and be happy”
(Anne Frank)

The pain from the seizure slowly subsides, his mind erased of memories. Our son is now gripped by the terror that autism brings. He needs strict routine. The seizure has removed that sense of familiarity. Memory loss. I know what is going through his mind. “Where am I” “what day is it” “what time is it” Eye’s displaying the fear he feels.

Recovery from his epileptic seizures takes much longer these days.

Epilepsy and autism entwined together. I continue to hold him, calmly talking and reassuring him. He is desperately lashing out at me, verbally and physically as he struggles to understand what is happening to him. It will pass. It always does. Right now, he is frightened. I will not shirk my place in supporting him. I hold him. “Look at me” I tell him, carefully averting my eyes so that he does not feel threatened by eye-to-eye contact. “Keep looking at me and take deep breaths” Gradually, familiarisation of my face and his environment returns. Breathing comes easier. Calmness eases his muscles and his terror.

The seizure attack and ultimate recovery time takes around five hours. Still, a residual tiredness persists which will take another day or two. I move him into the quiet area of our home. An area of resting colours, quiet music, and relaxed seating. Together we spend the next few hours just relaxing, my talking, our son has become non-verbal and so my words are not responded to.

It is easy to say, as many do, that our son ‘suffers’, I view it differently, in that this is how his world is. I need to embrace it and understand it. When I can do that, I can empathise with his understanding and together I can help him fly once again …