It hit us all quite hard. On Christmas morning, following a well planned build up to the day. Gifts that were not expected came to light and an extreme burst of anxiety rushed in. “What’s this” … “Where is it from” … “What will I do” … “do I open it” … “Can I leave it” … and many more fears, we can only imagine were terrorising his mind as our son come across them.
A person who has Autism can react in this way and we had learned a couple of years ago, to let our son see what his gifts are, help wrap them up and place them in his Christmas sack. That way, the sudden surprise of something different is avoided and he will be calm and in control as he works through what is expected. Completely forgetting all we had learned, we added a couple of last minute gifts that friends had sent him. Suddenly the bright and cheerful morning turned into one of terror. These two gifts had the effect of creating all his worse nightmares, instantly.
That was 21 days ago. This time, although we have been able to work through the fears and eventually get round to opening the gifts, lasting troubles still plague our son with increased uncontrolled seizures, virtually daily and migraines lasting two or three days. His mobility has worsened, his sleep is increasingly disturbed, he has developed severe shakes and his mood is very dark. “I’m sick of this” … “I’ll stop taking the tablets” … ” I wish it would go away” … “I’m fed up with this” … “It’s pointless” … many words he uses as he has heard elsewhere and his Autism brings out Echolalia which is repeating words that have been heard, ironically often in context, but he has no real understanding of them.
My wife and I have seen a step change and have our own fears knowing that uncontrolled seizures can lead to SUDEP and recently several cases have been reported on in the media, bringing home the similarities of the uncontrolled seizure. We know our sons condition is complex and we know and understand his life expectancy will be shorter. We seem to be facing a period where it is very challenging to enable him to become involved in all those experiences or observations we had hoped. For much of the last 21 days, we have sat calmly in our living room with him. He has not wanted to venture outdoors at all, he has not wanted myself or my wife to leave his side and we can see a genuine fear in his eyes if we need to.
His consultants have been made aware and we are monitoring every thing for them when we see them in a few weeks time.
We turn to God to look for his watching and caring love over our son, and for strength and answers. Sometimes we just as, why? We have never heard the words, “I love you Mum, and Dad” and I guess we never will, but those smiles we get from time to time are always heart felt. Of that we are certain.
Our hands, and faith, are with the medical profession now, soon we will know the next steps we will take and our support will of course adjust and change as our sons needs evolve. We may not ever get to see the sun set or rise on a shoreline, we may not get to fly a plane, but we will do all we can to make sure he remains safe, secure and loved …