Emily’s Asperger’s Journey – Dealing With The Judgements Of Others!

I first heard about this week’s guest blogger Emily Jones, after reading a story which featured in a local newspaper in Victoria.   Emily went to the press when she was being confronted by parents who wanted her child, Ed who is diagnosed with Asperger’s,  removed from the school he was attending.

When I read Emily’s story a piece of my heart just broke.  I remember going through exactly the same experience.  So, I contacted Emily, through the school’s principal, and since then Emily and I have communicated regularly, and she has also been another great contributor to the Facebook.

I am sure when you read this story, you will relate so much to her words.  This can be an incredibly tough journey, and there are two things we all learn in this process. Firstly,although we are mothers – we are also first and foremost human, and secondly not every day is a good day! There are some days that just confront and overwhelm us, and then there are days when all of a sudden the sun comes out and the whole world suddenly looks bright – they are the days we hang on to!

Emily and Mark have been married for 13 years.  They have three children, Eloise who is 12 and started high school this year; Ed who turns 10 this month, and Hannah who is nearly six.  I hope you enjoy reading Emily’s story.

Emily’s Story

Emily, Eloise and Hannah

Ed was our second child. A “healthy” 7lb 9oz baby boy. Great pregnancy, great labour.

It wasn’t until a few days after he was born that we noticed that his feet looked odd. The midwife told us it was normal for babies to be all screwed up and as they grow they stretch out.

He was such a chubby boy. Loved his food always laughing, a real joy.

As he got older, his feet stayed the same, and we noticed that one of his eyes was turned. He was also having trouble getting over his colds and ear infections. In the space of 12 months he was diagnosed with one of the worst cases of metatartus adductis (banana feet), turned left eye with only 20% vision and Asthma.

I couldn’t believe that there were so many things that were wrong. I never had this with my other child and it was all so new. I don’t do illness well. I always think the worst and I tend to panic.

We had both his feet manipulated and set in plaster, and then it was into calipers. His eye was patched and at the age on 17months he had glasses. His Asthma was in check and with the pump every night.

Ed Jones

At the age of three, we noticed that Ed wasn’t talking like everyone else. He would read our lips and not many people could understand him. We did, but not everyone could. He was checked out we found he had a bad case of Glue Ear. He was fitted with grommets and had speech therapy.

We had specialist for every part of his body. What we didn’t have, was someone that would look at Ed as a whole. We got a referral to a pediatrician who diagnosed him with Asperger’s and ADD.

This is the part where I get stuck. I can talk about anything else but this. I don’t know why and maybe by talking about it here I might finally write what I need to read. I look at other people and other families with kids with ASD and feel that they have everything under control. That they have routine and order in their house. Then I come to find that they are living day by day and most of the time their heads are just above water. Just like me.

Our ASD kids, need us to fight for them. They are great kids and are just as fantastic as our other children..and so I fought for Ed.

At school he struggled. He would bully and be bullied. He would lash out at kids who didn’t understand him. I got sick and tired of being the only parent called to the school when something went wrong. Time after time I would put myself out there to talk to other parents and explain how Ed would see the world. They didn’t want know. They wanted him out.

My husband and I thought it was time to take things further. I wasn’t going to have my son kicked out of a school by parents who didn’t want to take time to try and understand what a day in my shoes was really like. Didn’t want to take  the time to try understand that not everyone is the same.

We took our story to the local paper. We made front cover, we made a lot of new enemies, but most of all we spoke to a lot of people who felt the same. We didn’t ask for pity, all we were asking for was a fair go for our son.

Ed and Mark Jones – having fun in the rain!

There were a few letters sent in that were not in our favour. I guess you can’t change everyone’s mind.

When this all came out, and we were front page news, I started to suffer anxiety. I would have attacks a lot and some days I couldn’t even go to school and get the kids. It wasn’t until one day when I was at the gate that a mum, who I had never spoken to, walked up to me crying. She said that she was so sorry that there were people out there, people in our school community that had made our family feel so low.

There are days, where I feel that I can’t go on. There are days where I really need to hurt someone.

Every day is different. There are some really horrible days, but then there are days where they make you cry with laughter and it that makes it all worthwhile. I am not perfect; my thoughts are not always the nicest thoughts. But I know that I will always fight for my boy.

Emily Jones

If would like to share your story by being a guest blogger on David’s Gift, please email me sally@davidsgift.com.au When we share our stories, we help and inspire others who are on the same path!

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