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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autism, parenting, special needs, speical needs, Uncategorized

Jessicas ADOS assessment and the next steps

Yesterday morning I went into Jessicas school, where the next part of the autism diagnostic process was to be completed. After a short wait in reception and a brief chat with one of Jessicas teachers, I was then invited into the room in which the assessment would be carried out. I then met the two psychologists who had been busy setting up the room, and the child disability nurse who came out to ask me a series of questions regarding Jessicas development and behaviours, a couple of weeks ago. It was then explained to me that I had to literally just sit on the chair next to the door, and not give Jessica any help, or interact with her at all, unless asked by Jessica. The idea is they want to see how much of the assessment she could do on her own without any help. Turns out she did it all.

Jessica was brought into the assessment room by her teacher, she then looked at me, gave a big smile and shouted ‘Mummy’! And gave me the biggest and longest hug I think she ever has. She then looked around at everyone in the room, then pointed at me telling everyone ‘Look, that’s my mum’. Jessica then noticed the selection of toys on the floor. Amongst the toys was a jack-in-a-box which Jessica played with briefly, some small wooden bricks which she then began to stack up, a book which Jessica read all of (she can’t read the words just yet, she just reads what she sees whilst following each word with her finger), some plastic cutlery, and a car, I’m struggling to remember what else was amongst the toys, but it was easy to see why each one had been selected. I’ve just realised that the car was there to see if she would play with it, or be more interested in spinning the wheels, however, I don’t even think she even picked the car up.

Jessica played with each toy appropriately, without any help, and until she was invited to do the next activity. I was asked if she would play like that at home and I reinforced my answer given during the questionnaire, that Jessica never plays with or shows interest in any toys. If she had those toys on the floor or table at home, she would still be walking along the back of the sofa, doing roly polys and climbing on the furniture.

Jessica was then invited by the psychologist carrying out the assessment, to sit on the chair next to  her. She then said ‘Okay’, got up, walked over and sat down. Jessica was then presented with more toys. I could see that the idea was to now observe her imaginative play skills, aswell as joint attention, and sharing. Jessica was asked if she would like to play with the little wooden dolls, which she did, picking up the miniature plate for ‘dad’ when she was told he was hungry and picking up the tiny baby doll when she was told it was crying, which she then said she would put into bed as it needed some sleep. Some more items were then placed on the table. A plastic cup with a spoon, a small plastic ball, a small square of material and what looked like a box a necklace would be presented in, with the foam padding inside. I was pretty gobsmacked when Jessica then opened the box, saw the foam inside and said that the baby needed a bubble bath and put the baby inside. It didn’t even occur to me that was the idea of the box. She then said she would dry the baby and picked up the small piece of material wrapping the baby inside of it. I didn’t notice the link between the actual wooden dolls toys, and small non related items which were to be incorporated into her pretend play. Again, Jessica doesn’t do any pretend play at home. She has monster high dolls which she wanted for her birthday, but rather than play with them, she carries round in her Monster High bag, along with her Monster High books and pens. She also has a baby doll which she may pick up, give a cuddle to, then throw on the floor. We ended up binning her Hello Kitty kitchen about year after we got it, as she would just dismantle it rather than use it for imaginative play.

Whilst playing with these toys, the psychologist then said ‘Jessica, look’, and pointed to a fluffy toy rabbit on the table opposite. She looked, said what it was and was excited as it then started to move as the nurse controlled it.

The tasks which followed included Jessica being presented with a picture of a beach. She then started to describe what she could see, using verbs such as ‘boy swimming’ ‘playing football’, and adjectives such as  ‘holiday’, and a series of nouns. Jessica was asked if she had ever been on holiday before, which she replied with ‘No’, even though we went away three times last year. But we’ve never been abroad, just for long weekends away in this country, so Jessica in this context was associating a holiday as in somewhere with a beach. Jessica was the given a baby doll, and the psychologist used some play-doh to make a birthday cake. Jessica then put four candles in the cake, began singing happy birthday (without being asked to), cut the cake when asked, but not before she took out the candles, fed the baby, then wiped it’s face. When asked how old the baby was, she said 7.

Jessica then had a snack of grapes and biscuits, and was told to just ask for more if wanted. The psychologist then started blowing some bubbles, which Jessica jumped up and began popping.

At the end of the assessment, I said goodbye to Jessica and the psychologist took her back to her classroom, Jessica leading the way there. I was then told she had done really well, and was asked my thoughts on how it went. I agreed, really well. Jessica had also counted to 40 during the assessment (skipping from 20 to 30). I’ve only heard her count to 10 as she stops at 10 every time we count, refusing to count further. I also said I was very impressed with her role play, although role play is something she has learned through therapy, and it is repetitive rather than spontaneous. I then asked if they could give any thoughts and feedback but was told no, as this assessment is just part of the diagnostic process, which I already know I was just interested to hear if they had a clearer picture of where this will go. But I take it it’s their procedure to not give any results or indication of what the outcome of the assessment was.

The next steps are another questionnaire for me with more in-depth questions of family history and Jessicas development (I’m not sure how much more in-depth can they be from the last questions?!), and Jessicas observations at home, where I expect she will fully cooperated, participate and interact. I came home and did some more research in the ADOS assessment, and reading other parents experiences. I realised there are 4 different Modules, depending on a childs age and ability. Jessica did Module two, the module for children with some speech and phrases. Some parents had feedback and results straight after the assessment, some were sent a letter and score in the post, and some waited upto a year for a diagnosis. I had a look at the criteria and what exactly Jessica would be scored on. My initial feeling was she will fall short of the score needed for an autism diagnosis. Her interaction was brilliant, as was her attention, and eye contact, which made me feel disheartened. But I’m not a psychologist or nurse and they’re trained to look for things I probably never even noticed, so I guess it’s still a waiting game.

 

autism, parenting, speical needs

Stop juding our parenting

Todays news highlighted a story in which a young mum was ‘awarded’ £5 by a kind-hearted fellow passenger, in praise for her three-year-old sons good behaviour during a train journey. Although criticised for being perhaps patronising, nobody can deny the extreme kindness behind the gesture, and can only imagine the ego boost and rise in self esteem for being recognised for such good parenting. However, I think we are missing the point that this also highlights the upsetting example of exactly what we expect from children and what constitutes as ‘good parenting’.

I’ve been reading the comments made on links to the story on Facebook. Lots of proud mothers gushing about the praise they have also received about their childs wonderful behaviour and manners, a lady even commenting on how well behaved her 4 MONTH OLD was, also on a train journey, and another mum describing the praise received from other diners, as her she managed her two young children beautifully, meaning they dined on a nearby table in peace.

This is a letter I wrote to a local weekly newspapaer three years ago http://www.newsguardian.co.uk/news/think-before-interfering-1-4131880 It was written one afternoon, after several weeks of hurtful comments about me and my then three-year-old daughter. The comment previous to the one which prompted me to write the letter, was off a lady telling my daughter that if she didn’t stop ‘making those noises’, santa wouldn’t come. I think that was the first time I spat out the words ‘She’s autistic and can’t talk’, and walked home in tears. Last year I put a letter though both my neighbours letter boxes. Jessica, still largely non verbal at the time, was screaming from getting up, to going to bed. I discussed speaking to our neighbours about it with my husband and health visitor, but decided they know we have two small children, they’ll understand. Particularly the family with four children very close in age. However, after hearing one of them banging on the wall as Jessica screamed one morning whilst I struggled to get her dressed for school, I waved her off in her taxi, sat down with a pen and paper and wrote two letters, one for each adjoining neighbour, explaining Jessicas condition and assured them I would be seeking help and advice regarding the screaming at her pediatric appointment the following week. I know I should have knocked on their doors and spoke to them face-to-face, but I felt I wouldn’t be able to talk without getting upset. One neighbour knocked on the door, and told me not to worry and just concentrate on Jess, and the others, nothing.

Now at age 6, Jessicas  behaviour is very unpredictable, both and home, and especially in public. Throw in a 3-year-old and it’s a recipe for disaster. My anxiety levels shoot up every time I leave the house, as I not only have to deal with the potential difficult behaviour, but of course the on lookers, who are unfortunate to be in the same proximinty as my ‘un-ruley’ children which has obviously resulted from my terrible parenting skills.

I should mention that I took my children to The Baltic last summer. They love arts and crafts, and so took them to join that days activities, which they did and thoroughly enjoyed. However, as it was time to leave Emily threw the mother of all tantrums  as I tried to fasten her in her pushchair, whilst Jessica shouted continuously that she needed the toilet (Autistic children don’t always understand the concept of waiting). Jessica then ran away, so I lifted Emily out of the still unfastened pushchair (due to her kicking and screaming), picked her up and ran after Jessica as she was heading for a lift which doors were about to close, heard the pushchair laden with bags hit the floor, grabbed Jess by the arms, and that’s when a young girl working at the Baltic kindly asked if I would like any help, and held Jessicas hand whilst I again battled to sit Emlly in her pushchair, and reasurred me everything was fine by telling me her mum has told her stories of how she would often act up in public as a child.

We need to remember, this is 2015, not 1940. Our children are no longer expected to be ‘seen and not heard’. We should live in a society where we support each other, not praise those with beautifully behaved children, and chastise those for not. I spent most of the summer last year indoors feeling unable to cope with the glares, comments and stares should my children so much as make a noise, I’m not doing the same this year