asd, autsim, parenting, speical needs

What followed Jessicas diagnosis

Three weeks ago, I received Jessicas Autism Assessment report. I’ve spent the time since then just kind of taking it all in and reading it over a few times. It’s 10 pages long, contains quite a lot of information and each time I read it I seem to pick up on something I hadn’t already.

I met up with the Clinical Psychologist and Autism Specialist nurse, who gave me some time to read through the report, which is quite hard to do when in someone elses presence. The pressure!  Obviously there was no pressure, but it’s a bit like being asked to provide a sample on demand during an anti-natal appointment. Your bladder refuses to cooperate, as does my brain sometimes. Some parts were quite upsetting to read, but I wanted to remain composed and deal with any feelings later on my own.

It’s not easy reading that during the school observation, the psychologist found that Jessica would sit next to, but not interact with other children, or that she doesn’t show any emotions other than excitement. Her ADOS assessment also showed that Jessica would only talk about items or topics she was interested in, and didn’t participate in to-and-fro conversation. I already knew all these things, but it’s different seeing them in print.

The report concluded that Jessica demonstrates a range of autistic traits in the areas of language and communication, reciprocal social interaction and stereotyped behaviours, reaching the threshold for a diagnosis of autism. Along with this, Jessica also has a learning disability.

After a few minutes I started to ask questions, after originally having non. After almost four years of reading up on autism, I kind of felt like a pro. I thought I would just thank them for their help and that would be everything done. But I needed to know how her future looks regarding school. I absolutely love her school and feel like I owe the world to the staff, but there is a little bit of me that remains convinced I could be taking her to the school just down the road myself some day. But the learning disability means that Jessica needs a visual timetable to get through a school day, she needs a quieter environment with minimal distractions to concentrate and visual aids to learn. She learns through seeing pictures rather than hearing words. Her needs may always be too high for a mainstream school. But I do mean it when I say I am absolutely fine with that.

I was also interested to know where Jessica falls on the spectrum. I didn’t really get a definitive answer. I think there is a preference not to classify as children can move about on the spectrum. But from what I could gather I think the general feel is pretty much mild, but almost leading into moderate.

The nurse then stared to talk about Jessica growing up and going through adolescence and how I might need help preparing her for change, and different stages of life. I know all kids need help with that, but more than a neuro-typical child. Something I hadn’t really given any thought to. And about how she is going to need to be taught skills which she doesn’t have or will ever come naturally to her. How to hold a conversation. How to act in social situations. What is and isn’t acceptable behaviour in public as opposed to at home. Just everything. Everything we do and our children do and we take for granted. I’ve pretty much got to manually programme my daughter in a sense. But with the help of support, books and any resources I can get my hands on, I can do it. I’ll do whatever I can to make Jessicas life as fulfilled, enriched and absolutely full of friends, as it should be.

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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