asd, autism, general, parenting, special needs

So today we got a diagnosis

Today came the news I’ve been waiting for since january this year, and anticipated since january 2011. I’ve gone from fear and denial to acceptance and hope.

It was just over a year ago that we decided we wanted an offical diagnosis for Jessica. I know some people feel a diagnosis is a label, I did at first, but it’s an explanation. I want people to understand why Jessica is who she is, using just one word, and I want her to be able to do the same as she gets older.

A diagnosis takes time, and it wasn’t until January this year the process began. The four parts were all done in quick succession. The first part was a meeting with the Child Disability nurse where we talked about Jessicas development, then the second part, the ADOS assessment in school, part three involved the team meeting and talking with teachers, and observations. Part four, a meeting with the psychologist where we discussed Jessicas development, her areas of concern and family history. Everything was done the first week back after half term in february, and I’ve been waiting every day for a phone call to arrange a time to discuss the results. Every time the phone has rang I’ve answered it hoping it was about Jessicas assessment. I said I wouldn’t let the wait get to me, but it has.

The phone call came today. I knew it was the psychologist as soon as I heard a voice. She apologised for not being in touch sooner, as they’d been very busy. She said she would like to arrange a time to come out and discuss the results of Jessicas assessment along with the nurse. We arranged next thursday afternoon. My heart sank as I thought I’m going to have to wait another 9 days to find out some kind of conclusion. I thought about asking her what I could expect to be told, but I knew if she could give me any information over the phone, she would, so decided not to. But, she then went on to explain that she and the Child Disability Nurse will be meeting up with Jessicas pediatrician next week, and they’re going to tell her that Jessica does meet the criteria for a diagnosis of autism. The doctor will then give the official diagnosis.

She then kept talking, but I have no idea what she said, I was taking in that one sentence, the one I’ve waited four years to hear. I think I cut the phone call short by saying ‘ok, see you next thursday at 1.30’, hung up the phone and just stood there. It’s the result I’ve both expected and hoped for. It’s the only diagnosis which explains every aspect of Jessica. If I’d been told she didn’t meet the criteria, I’d have been disappointed. But it’s news you don’t ever really expect to be told, so it’s one of those situations where you can’t possibly predict how you will react.

I have had a few tears. I rang my mum to tell her, then my dad. I knew Andrew would be home in about an hour and didn’t want to have it on his mind driving home, so decided to wait to tell him. He came home, I told him and like me, he expected it but still felt slightly in shock. We told Callum, he gave her a cuddle and even actually asked if I was okay.

I’m not sad, I’m not upset, I’m not worried. I’ve spent too long being all of those things. I’m relieved, I’m content and I feel so incredibly lucky to be her mum. If it wasn’t for Jessica, I wouldn’t not only be writing this, but any blogs at all. I wouldn’t be the strong person I’ve had to become. My life wouldn’t be half as unpredictable and colourful.

So that’s it. My beautiful, smart, funny, clever, intelligent 6-year-old, who didn’t call me ‘Mummy’ till a week before she turned 4, who repeatedly asks the same questions, who is currently OBSESSED with shop names and clothes labels and will only wear clothes from H & M at the minute (not a fashion or brand thing at all, a logo thing), who tires me out with her sometimes 5am rises and extensive energy, who lights up my life like I cannot describe, has autism. And I’m so very proud of her

Advertisements
asd, autism, general, health, parenting, special needs

What April 2nd means to me

For many parents, today is the last day of term with one long weekend followed by two weeks to spend with their children at home. For me, it is that, and so much more.

April 2nd, is World Autism Awareness Day. A day I wasn’t even aware of until two years ago, and a condition I knew nothing about till 4 years ago. Today is about spreading awareness of a condition which affects 700,000 people in the UK, and taking into account their families, touches the lives of 2.7 million people, every single day.

If you’re reading this via Facebook, and you’re one of my friends, I know you’ll know what autism is. I’ve made my families journey with autism public for just over three years now. I’ve done it because I want to normalise a condition which I knew pretty much nothing about, as I’d never been exposed to it. I’ve done it because it helps me cope with the situation. It’s an outlet, it’s therapeutic. I’ve done it because I’m so incredibly proud of my daughter and I want everyone to know that disability does not mean inability.

But for anyone reading this who is unfamiliar with autism, it is a lifelong and disabling condition, which without the right support, can have a profound and often devastating effect upon individuals and their families.

Autism affects how a person communicates with and relates to other people, and makes sense of the world. Autism causes difficulty in three main areas, social communication, social interaction, and social imagination.

For me, it’s important to create awareness as autism can be described as an invisible disability. A child having a meltdown brought on by a variety of factors (light, sound, smell), can easily be mistaken for a ‘naughty’ child. I want my child to be accepted and understood. I want to feel supported, and not judged.

But most of all, I want EVERY parent of a child with autism to feel their child is accepted and understood. I want EVERY parent of a child with autism to feel SUPPORTED, and NOT judged.