Desensitization program…..

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Doctors appointments are like buses, there isn’t any insight then 2 come along.

These past few weeks Teddie has seen a countenance specialist & has had an assessment at EWMHS (Emotion wellness mental health service) with the aim of being offered a desensitising programme for is anxieties.

Unfortunately, the countenances specialist could not offer this programme but gave us lots of helpful tips to work on while we wait for Teddie to receive a program.

I was very doubtful Teddie would be offered a program with EWMHS as during his assessment all that was mentioned was social stories. 

“Have you tried using social stories?

How I didn’t leap over the table for this woman I really do not know so I repeated what she had said in case I had misheard her. She then started to tell me what a social story was, I interrupted her mid-sentence and said, although I appreciated her professional opinion and a description of what a social story is Teddie was past the stage of using social stories. 

I completely appreciate people study or train for years to do the job there in but unless you live with an ASD child YOU HAVE NO IDEA. It’s bloody hard work & it’s a 24/7 job, not a 9-5 job where you can leave the stress of a hard day behind you. 

During our appointment, I made it clear I was not the type of parent that takes No very well. I had my professional head on and at times was as qualified as she was. So when she has the audacity to ask me if we have tried social stories I took that as an insult. Teddie will be getting on the program as he bloody needs it.

 However, I am overjoyed to say I received a letter this week from EWMHS offering Teddie a desensitization program.

I’ve come to the conclusion that the only people parents can rely on are ourselves, we have to fight at every corner to get what our children need. I know I’m to the extream but honestly, I don’t know where Teddie would be if I wasn’t.

What is a desensitising programme & how does it work?
A desensitising programme is a type of behavioural therapy that can be used to help children or adults with ASD & Asperger’s syndrome effectively overcome phobias and other anxiety disorders. 

There are many stages of a desensitising programme. 

  • COPING STRATEGIES– Assess the child’s sensitivities, to find out how severe they are.
  • PROGRESSIVE EXPOSURE– A gradual exposure to the feared object. 

PSYCHOLOGICAL PREPARATION:

  • Desensitization works best when the child feels comfortable and empowered
  • Find the thing that upsets the child.
  • Allow the child to experience the object in a non-threatening way.
  • Listen to any concerns they have, and reassure them as best as you can. 

For Teddie, his anxieties affect him more than his inability to communicate (although his speech has come on leaps & bounds) These fears hinder him daily especially using the toilet. This is our main focus however the programme will cover a wide spectrum of Teddies fears with the end result of helping Teddie to access toilets throughout his day.

We have no idea whether this program will help Teddie with his fears all we can do is try.

We will continue to be Teddie’s voice and will always fight for what we believe in.

We love our bear and wouldn’t have him any other way.

The National Autistic Society

 

The A word………

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A question I am always asked is whether Teddie is aware he’s any different from his peers, my answer has always been the same,

“No”

Teddies confidence has always been refreshing, without it I think he would be a completely different boy.

Teddie is unfamiliar with unkind words and name calling, I doubt he has any concept of them if a child said something to him as he’s never been around that environment. Unless there was physical contact, ie pushing Teddie would continue to play around them. There will, of course, be a time when Teddie is exposed to this bully like behaviour, I only hope this never hinders his confidence.

Teddie will happily approach new children and always tries to join in on their game, especially if its chase.
The difference between Teddie and the other children is Teddie has no concept whether the children want him to play with them, most of the time Teddie isn’t playing with the new children, he’s actually playing alongside them. If the children ran off without him he would happily run with them thinking he is joining in.

This week Gareth and I caught up on the TV series The A word. The story follows members of the Hughes family, who seem to lead a normal existence until they receive some unexpected news. Communication problems with 5-year-old son Joe Hughes lead to a diagnosis of autism.

While watching The A word I noticed a lot of similarities to our journey, we went through the motions of saying

“he’ll get there”

Although there are many similarities we have never hidden behind Teddie having special needs, in that respect, we are complete opposites.

last weeks programme, Alison Joe’s mum forgot to charge his iPod which he listens to all the time, Joe’s iPod runs out of battery in the car on the way to his new specialist school. This completely changes the dynamics of Joe’s morning resulting in a difficult transition into his new school for Joe and his mum. I sympathized with her as the slightest change to routine can make or break Teddie,

I love the series but what annoyed me was how quick Joe got a placement into a specialist school, most families I know have had to go through legal proceedings to get a placement.
I know it’s only a programme but I would have liked the series to have shown the struggles us families have to go through in order to get what our children are entitled too.

I have made more PECs cards this weekend, Teddie is still showing signs of being unsettled, even at home. I have placed social stories on our routines and the school transition around the house so he knows whats happening. I have also printed a plan & completed board for Teddies 1:1 to try, if the day can be planned ahead Teddie will feel less anxious if he can see whats going to happen (hopefully)

Life with a Bear has its up’s and down’s but as always we wouldn’t have him any other way!

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