Ghostdogs

Doing what I was told # This has to be the worst bunch of words in the English language. Often said when someone does a horrible thing. Used through history at some of the lowest points in human civilisation.

A little while ago I watched some parents struggling with their child. It was in a hospital canteen and it was busy. Basically they were trying to get what looked like a 10 year old boy to use cutlery to eat fish fingers and chips.

First an example scenario. Just to draw a picture without getting too personal. You are out and about and you see an advert for a dog walker. Just what you need.

Posted 20Jan2024 03:05am This is a long post so go get a drink before you go any further. The point of this post will be to answer some of the emailed questions I have received from the last two posts (No Rescue and Post No Rescue).

I was asked by a few people to write something about my last post. I have given it some thought and I still feel that what I wrote was from a place I exist in.

I have seen too much death, suffered too much loss and I no longer fear death. I look at society and each day I feel and see actions that convince me that mankind is a pox on this planet.

16 years, where did it go. The last 5 and a half years have been tough for you. I know how much you have missed Mammy every second of everyday. I know it has been hard for you.

Another year sweetheart and so much has changed. Tam is doing a lot better now. He is fit and well, his temper although just under the surface still, is more contained.

So the search begins. Turning stones over to find out what is underneath. What has life got left to experience? What do I look like now? Plus a whole load of questions that I have not even thought about or want to think about.

The past few months feels like I have been turning rocks over to find out who I was and who I will be. So far I have found nothing under the rocks that I like or that is useful.

Over the years since Bev died I feel like there have been so many let downs from a system that could only be seen as totally broken. I look back over the this period and think that if I had approached it from the perspective of that I was alone in walking out of the fire that life had become it would have been easier.

When life gives you lemons make lemonade. # I have not liked that saying for most of my life. Right now though it makes sense. Sometimes you have to apply the saying in a different way and use that deep down sarcasm that lurks inside us all.

A Cautionary Tale to those who have to look to local authorities for help. I write this for all of the parent of children that might need a bit of help from the social services.

Another rotation around the sun is done. Half way through the first month and not a thing has been done Tam is taking every moment of every second even when he is asleep.

If I wrote this piece a few weeks ago it would have been a detailed synopsis of all that is wrong with the treatment that Tam got from Claire Dover at Ferndene.

After a tough day yesterday and difficult sleep Tam was awake at 2am. At first he seemed to be OK and was singing happy birthday at Bev’s memory wall. He ate breakfast and asked for ice cream.

Waiting for the hammer to fall # 16th August # I have been put in a situation that feels like a battlezone and right now I am just waiting for enemy contact.

I think the biggest questions me and Bev had when Tam was diagnosed was “When will he speak?” and “What will he be like as an adult?”. Both of these questions were not answered and its only many years later I have realised why.

Why headphones? # Well sound sensitivity is a common cause of problems for people with autism. It varies a lot and the outcomes can be dramatic when a sudden sound hits that sensitive spot.

We have been up to a lot of things in the weeks since Tam was discharged from hospital. Some of them I might talk about here, but some will have to wait.

So over the past 2 months a lot of things have changed and I though it might be good to share what has worked well and what hasn’t. Now/Next # One of the things that has helped Tam at school has been his “Now and Next” board.

It’s Monday night and Tam has been home for about 12 hours. This is the first photo taken of him. To say he is a happy boy would be an understatement.

So planned visit with Tam today. It did not go as planned. Arrived at the hospital and was signing in when I got a call from an unknown number. It was the ward in the hospital to say that there had been an incident.

Oh hell, the day arrived that I was fighting against for so long. I had to get Tam some help and the only form left to me is to have him sectioned.

Update # I find us in a position that we need to make some tough decisions. Tam had a bad day at school on Wednesday and a couple of really bad nights due to that.

A lot of questions have come from the last post about Tam being excluded from respite. So, with the saying of “there are 3 sides to every story” I will explain the situation so that other people can learn from the situation.

I know it has been awhile since I have posted something but I have not had the mood to write anything positive. In the past month Tam has had a week off school with a bad cold (remember them?

When things go wrong it is very easy to get down and despondent. The past few months it would have been very easy to let that happen for me and Tam.

Frame of reference # Tam struggles a lot with holidays. The worst time is christmas because it has a load of indicators about losing Mammy. But other school holidays have immense challenges for him.

Well the holidays started off bad and got better. Tam started some new medication and it appears to have helped with anxiety and grief. It has not stopped him getting frustrated at things or from getting upset and crying when he thinks about Mammy.

Tams Holidays # The holidays started out really badly but did get better. Hope you like Tam’s photozine. I set it as kind of a challenge for us and something that had some structure around it.

I was going to write about things that went well and things that were tough in 2021. It was tough thinking about the year so I decided to write about one thing.

December has always been a difficult month (I feel like I might have said that before). It started a bit earlier this year and has been more intense than previous years.

Photo walks were always going to be a big part of the holidays for me and Tam. It’s a big part of his weekend to get out for a walk with a camera bag over my shoulder.

December is always going to be hard for Tam and me. The hole that was left in our lives when Bev died gets bigger again once December comes around. For Tam the sight of Christmas decorations and adverts can become too much and I have to try to isolate him from it.

December is always going to be hard for Tam and me. The hole that was left in our lives when Bev died gets bigger again once December comes around. For Tam the sight of Christmas decorations and adverts can become too much and I have to try to isolate him from it.

For a while now I have been thinking of taking the website down. Sometimes it acts as a memory of things we have been through and how much of a struggle both me and Tam have had.

Every week I try to make some time for a mental health day. Sometimes the plan is to just go and sit in a cafe and have a quite coffee and a cake, sometimes it just go for a walk.

This might end up being the longest post that I have written. I am largely writing it as a way of pulling together all of the things that have helped and therefore to remind me what is working. I hope as a side effect of that you find something useful.

Over Christmas Tam has enough to deal with. I try my best to protect him and show him all of the love that he could want. We have as much fun as we can and when fun is not welcome we prop each other up and work through it.

At 3pm today 13 years ago the world welcomed Tam Samuel Greenwell. My beautiful son. Bev had to have an emergency C section as Tam had wiggled himself into nearly hanging himself on the umbilical cord. Kids!!!

Looking after Tam and myself can be tough. Over the past few days it has been really tough. Yesterday Tam was sick. Nothing he had eaten that I can blame but he kept purging for hours and it became too much. I pleaded with him to go to bed and rest as I was not coping.

As parents life is full of worry. It does not matter what kind of child you have its full of worry. The only thing different in being a parent of an autistic child is that you have to decipher each situation. The obvious answer is not always the answer.

The Kubler-Ross definition of the stages of grief are listed as Denial, Anger, Bargaining, Depression and Acceptance. I understand the principle behind these stages but they are very much a simplification of the grieving process. Everyone grieves differently and the cause of the grief also causes the grief to rotate in different directions.

Written 3rd July 2019

I am not totally sure of my reasons for writing a blog or a book at the moment.