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

 

Reflection

How has 2017 come to an end already, where has this year gone?

The support we have had from family, friends and strangers who now we class as friends have been overwhelming.

I started writing Life with a Bear mainly because I felt like I was going insane with the behaviours I was experiencing from Teddie, I needed to vent my frustrations through writing. I never expected to get such a good response just from being honest with how I was feeling with Teddie’s journey. 

This year has brought ups & downs from having appointments cancelled left, right and centre, Overcoming one hurdle only to be faced with another, leaving preschool and starting school.

The kindness and support Teddie has received from the staff at preschool and now at school are truly amazing. Teaching is a job but caring the amount these lovely ladies do about Teddie’s well-being goes above and beyond their job role.

In the beginning of our, journey I don’t actually think autism was something I even considered, I just thought what Teddie was experiencing was a speech delay.

It wasn’t until I started researching speech delays in children I stumbled across an article on non-verbal autism, as I read through the article it was like someone was reading about Teddie, I knew in that moment Teddie was autistic. 

I’m often asked how I feel about Teddie’s disabilities, I understand why people would ask that question, I would probably ask the same thing. For me, it’s never been an issue, would I prefer Teddie not to have autism? I’m really not sure. 

Don’t get me wrong at times (most of the time lately) I HATE autism;

  • I hate the waves of distress it brings Teddie.
  • I hate the anxieties that haunt’s Teddie daily.
  • I hate the fear & sadness it brings him.
  • I hate that Teddie cannot express love or emotion like we do.
  • Most of all, I hate there’s no cure!.

As much as I have hate for autism, autism has made Teddie who he is. The love we have for our Bear takes over and will always outweigh the hate.

From the minute Teddie was born I knew in my heart he was gonna be our special Bear. I couldn’t take my eye’s off him and haven’t really since.

Teddies personality is infectious, he is so confident (considering) he lights up a room when he enters it we honestly couldn’t be prouder of him.

Parents often count down the years till their children grow up and are off their hands, I know we certainly have with Harvey (I’ve got my eye on his room). As much as I wanna push Teddie into the wide world we have to realise that maybe something that doesn’t or cannot happen.

For now, my everything is solely learning, researching and help educate people on what life can be like for families affected by autism.

We wish everyone who follows us a very Happy New year!