Autism diagnosis journey #2

Journey #1 was underway but hitting obstacle after obstacle when it became clear that G also needed support, but in a very different way to J.

G had a trauma in her young life which brought many of her difficulties to light and also led me to engage with all the support services going in the local area, and then again when we moved to a new area.

Unlike with J, G's difficulties are easier to see from the outside and more 'typical' of autism in girls.

G went to two primary schools, having to move abruptly following her young trauma and finding it incredibly difficult to change to the second school she needed 1:1 support immediately and her teacher realised this without me having to say anything which was refreshing.

However, it was so distressing to ave to drag her into school everyday we made the decision to stop putting her through it and deregistered her. She is now home educated too. If I had known that home education was a legal and valid alternative way to educate your children I would have never sent any of them to school. School can be brilliant for some children, can be the making of them, but for others who are bullied, slip through the net, learn differently or are extremely anxious it is a living nightmare.

I took G to see our local GP with a diary of my concerns and asked for a referral to CAMHS (child and adolescent mental health services). The referral bounced back so I referred her again myself after finding a copy of the referral form online. I decided to bombard them with paperwork and evidence so they gave her an initial appointment. Ironically it came through as two days after J's initial appointment after all the fighting and arguing (they call this advocating for your child but it feels more like going 10 rounds with Anthony Joshua).

The mental health nurse said we would have a long wait to be seen, but I knew that already.

In the meantime it was becoming more apparent that A was also displaying symptoms and difficulties similar to J, so journey #3 was about to begin.

I didn't know which way was up anymore. I decided I needed to try and help one child at a time.

Whilst J was waiting for CAMHS to see him after his diagnosis I took G to see a private occupational therapist for a sensory assessment. They picked up on a multitude of issues I had never even considered, but which instantly made sense.

With the sensory processing difficulties G was coping with fresh in my mind I started to think about J, so booked him in for a private occupational therapy assessment too.

Meanwhile G had an appointment through with CAMHS thanks to a new ruling which was designed to cut waiting times. She was assessed in a tiny white windowless room, in a long corridor reminiscent of a ferry. There were two women she had never met before, a table, and a chair for her. I wasn't meant to stay but there was no way I could leave her. She curled up in a ball on the chair and shut down entirely.

She was diagnosed following the assessment with high functioning autism (they don't call it Asperger's anymore), anxiety and selective mutism with signs of post traumatic stress disorder.

The NHS occupational therapist saw her and discharged her after one appointment because they can't do a sensory needs assessment.

The NHS speech and language therapists saw her and discharged her after one appointment because she can physically produce the sounds for speech.

There is no help for her. No support to help her through her problems. She self harms, has dark intrusive thoughts, struggles with depressive episodes and pain. She is only 9 years old.

The NHS could offer her six sessions of counselling but it would take her that long to be able to trust someone enough to speak to them. She has been through similar with Mind. They offered her sessions with a lady who promised her she could go back if she felt low again, but then the lady left. Services are not good enough and my heart breaks for her.

#Autism #SelectiveMutism #SM #Aspergers #PTSD #anxiety #CAMHS #mentalhealth

Gymnastics

We face a weekly dilemma here- gymnastics.

All three children enjoy the sessions once we are there, all three are progressing well and are confident enough to speak to the teacher/coach (a huge achievement for them all).

But....the demand of getting there every week, knowing it is coming up and knowing who is/in't there who might be there is often too much for our eldest and youngest, leading to tension Wednesday evenings and meltdowns Thursday mornings.

I have always managed these with the aim of continuing with the sessions because I see how much they thrive when they are there and am reluctant to let it stop.

The gymnastics is held in a community hall where mats are rolled out on the floor, apparatus unfolded from a cupboard which must be related to the tardis, and then tidied away again at the end (usually by our children and the coach amongst a few others). They can work towards the gymnastic badges if they want to - of course both our children with PDA want to, and are highly competitive over who has which badge first, despite the 7 year age gap.

We had tears from our eldest child this last session for just this reason in fact. All of our children have been at 99% of the sessions, so are around the same stage in the badges too. But- our eldest daughter passed her badge this week and the other two didn't. I can hear you all gasping for air knowingly right now.

Our youngest struggles to process a lot of what is said in the sessions because of the movement, other people there, poor concentration and lack of processing time allowed for, but she copes by copying her siblings and hand signals from me. Our eldest tried his best to practice the two skills he is lacking for this badge, but the coach ran out of time, meaning he has a long wait until the next badge session. No amount of explanations or empathy helped him. In the end I took him for time out from the session, suggested a splash of cold water and a swift return to the cool down, which he took me up on, but it has compounded a difficult week for him. (concerned mother as ever).

Small things like this which can be easily brushed off by most children, are a massive issue for my children. They get stuck on unfairness, perceived uncaring and my eldest struggles hugely with the idea that one of his younger siblings might achieve something he has not (although he tends to take it better if it his youngest sibling for some reason).

Because of the processing time my youngest requires, it is heartwarming at times to see him physically helping her in gymnastics, showing her and supporting her to achieve the stretches/shapes and moves she needs to complete. But at the same time he laughs at and demeans our eldest daughter. It is at these times that praising the positive and ignoring the negative becomes tricky........but doable in the long run, with a close eye on her mental wellbeing and mental health, and strategies and techniques for her to deal with it too.

All cats have asperger syndrome

Wow! That's my reaction to this amazing little book.

If there was a checklist for a perfect book for my daughter, 8, it would read something like this:

1. Cute cover
2. Cute, fluffy, cuddly animals inside.
3. Not too many words.
4. Means something to me or makes me feel better.
5. Cute pictures.

Well, this book ticks all of these boxes and then some.

I love books, I love how they can help and inform people without being forceful, overbearing or being misunderstood. They do not require demands, they do not chase you or contradict you. They can bring about a full range of emotions in any reader, no matter their age.

My daughter has felt different for some time. She has verbalised this to us, and we have tried our best to help her, as you will know if you have been reading these posts so far. No matter how much we reassure her that she is not weird, she is different in a good way and to embrace this as she is amazing, I think it means more when it is in print than when it comes from your Mum.

We read through every statement before giving it to her today, Every single page means so much and made us instantly think of her.

When she got home from the care farm we showed her the book and the smile that beamed across her face said it all. She loved the pictures inside but more than that she recognised herself throughout the book. She was able to see that she cannot be the only one, because someone else wrote this little book.

If you have a child with aspergers syndrome, or high  functioning autism as it is now diagnosed in the UK, I strongly recommend this book. It will help your child not to feel so alone, is not a self help type book, but a pretty and approachable book with a neutral attraction and cuteness factor.