A taste of reality …

A taste of reality …

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 …


14 thoughts on “A taste of reality …

  1. Oh Paul this makes for hard reading. I knew things were difficult for you right now but I didn’t realise quite how traumatic Christmas was. Stay strong, you’ll get through this tough period I’m sure.

    Sending love & hugs to you all especially Marc. Give Lady Bronte & Miss Moneypenny a hug for me too.

    Love Julie xx

    1. Your very kind Julie, thank you so much. It’s not easy to see him suffer and not to be able to do anything about it other than offer support and love, but hopefully we will get a productive review in a few weeks time. šŸ™‚

  2. How very sad.
    My wish for 2018 is that something can be found to ease Marc’s troubled mind and make it easier for you all to live a happy and peaceful life together.

    Please tell Marc I said hello.

    Best wishes to you all

    1. Your very kind Dougie, thank you so much. I think that after his next review we will (I hope) have a clearer idea of expectations and hopefully some medication that will ease his troubles šŸ™‚

  3. So difficult for you Paul. I cannot even begin to imagine your situation but admire your courage and your determination to find answers and help Marc to be as comfortable as possible, in every way. Our prayers are with you.

    1. Your very kind David, though it is Marc who suffers, we just feel a sense of helplessness, but it’s a new year and as things deteriorate, we are hopeful that in itself will enable new thinking towards a solution, Thank you so much šŸ™‚

    1. Thank you so much Les, Christmas 2018 is being planned already! We have to be careful about the triggers and hopefully we will be able to explore new medicines, which may prove successful through the year as well šŸ™‚

  4. Iā€™m sorry Marc is having such a hard time right now all because of 2 presents at Christmas time. I hope you and your wife get some answers from the specialists in February!

    Iā€™m prayer for you and Marc. Hopefully, Marc, will find his way out of his depression before you go to the doctors ā¤ļøā¤ļø

    Your key-pal buddy

    1. Your very kind Diane, thank you so much. Really understand the triggers, is key. We really cannot overlook anything and in time we hope to redevelop his coping techniques as well. As for the seizures, we can only hope that the decline in his health enables an opportunity to consider something not previously thought of. Until then, we continue to support in the best way we can. šŸ™‚

  5. You and your wife are in my thoughts at this very difficult time. I can only sit back here downunder and admire you for your positivity and coping skills.

    Best wishes from Sally

    1. That is very kind of you Sally, we really do appreciate your support. I always say however that no matter how difficult it can become for my wife and I, it is our son who is experiencing all the pain and terrors. If we kind find some relief for him and it is that we need to remain resilient and determined, but at that point I’m sure his world will become a happier place for him. Thank you so much Sally. šŸ™‚

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