Standing in the Distance

20121103-223251.jpgThe night when all the fireworks displays around the country are shining bright and making the loudest noises.

I like fireworks, NO, I love fireworks. The problem I have is that my son has a sensory processing disorder and for that reason we are unable to enjoy them.
Tonight was a mixed bag of emotions; my in-laws have moved closer to us but even closer to the main centres fireworks display. Yay!!

The plan was to go there for dinner then all pile into the garden and watch the fireworks from a distance; hoping that they’d be big enough to view. It was a little nippy and they started off later than scheduled, but they started with a bang a very loud bang that our son didn’t enjoy. He ran into the house quicker than you can say ‘go’ and closed the door behind him refusing to come out. It wasn’t our house and I wasn’t going to leave him in doors on his own so I tried to get him to watch them out of the landing window – point blank refusal.

There was a little whining and weird behaviour, mainly because it was getting late and not part of his usual routine but also because it was something he wasn’t enjoying. He didn’t like how the noise and vibration of the fireworks ran through his body.
I managed to draw his attention away from the discomfort by giving him my phone to play a game, but it didn’t change the fact that I was unable to go outside like you’re supposed to on fireworks night. I wasn’t able to appreciate the nipping cold air while snuggling into the many layers that I’d piled or do any awing at the amazing fireworks. I did however get to see them from the landing window and towards the end I actually had a big smile on my face, but it wasn’t as enjoyable as it should have been and it tugged at my heart strings.

It made me sad that my son is unable to participate in the yearly enjoyment that so many children love. That we can no longer go to events where fireworks are the main attraction, or any attraction for that matter. We can’t join in with friends and family who boast amazing photos on Flickr or Facebook, or give us their run down of events and their adventures from the weekend that we know we’ll never be able to have.

Next week I’ll give my usual smile of excitement at their stories, show my interest and maybe give encouragement for more, nod and ooo – ar, but deep inside, It will still be hurting!

Louis Theroux – Autism Documentary

Some of Louis’ documentaries can be very controversial but these two are apparently made with a little more tact and met with more understanding and less disbelief!

Will you be watching it? Let me know what you think once viewed (Thursday at 9pm on BBC)

Louis’ Blog

Coming in April: Extreme Love

“…Part 1 is about Autistic kids and their families.

We base ourselves in New Jersey, the number two state in America for its rates of Autism. According to the latest stats, one boy in 29 is diagnosed with the condition. (Rates for girls are much lower.)

Services for Autism in New Jersey are considered to be among the best in America and we spent much of our time in an extraordinary school, the Developmental Learning Centre in Warren.

The DLC Warren educates Autistic kids from three to 21 and tends to take kids who have more of the challenging behaviour associated with Autism: frequent tantrums, aggressive outbursts, serious verbal and social disabilities.

A lot of the coverage of Autism in the media tends to focus on the milder end of the spectrum: Asperger’s (as in the best-selling novel The Curious Incident of the Dog in the Night) or cases where the deficits are compensated by extraordinary abilities (as in Rain Man).

We made a decision to look at more “typical” Autism.

Among our contributors was Joey, aged 13. Joey’s a charming kid, outgoing, he reads and…”

via Louis Theroux – Home.

Touch

Let me tell you about our daughters sensory issues to touch!

She doesn’t like people touching her, a hand on the shoulder, a pat on the head, a touch on the arm, a kiss on the cheek, a cuddle – all are not allowed except when she is in the company of other people and will quietly take them with a grimace and then explode later with rude outbursts in behaviour.

Trying to find clothes that she will wear is very very hard; apart from the usual fads for any child of not liking what they should, she doesn’t like clothes touching her skin. It wasn’t until about two years ago when we were looking into our sons Autism and Sensory issues that I started to realise that she had a sensory issue to touch. As she was getting older, her outbursts became more apparent: aggressive, physical and more verbal. She would flail her arms out, swipe out at whatever would touch her, stamp her feet, wriggle away while making babyish tones of disapproval and outright refuse to go near male figures such as her father or mine. This I can only assume is due to their masculine appearance/demeanor which she associates with the boisterous boys and rough, scratchy, whiskered faces.

We learnt just before Christmas from her teachers, that she had also spotted that our daughter didn’t like touch. Upon placing her hand on her shoulder during class, she would quickly lower her shoulder away from the hand and her teacher removed it. She said that over time during that term, she’d been doing it gradually and keeping her hand there longer each time as this was something she would have to get used to in life. This I fully agree with, but being in Year 6, this was the first person in school to notice one of her problems but hadn’t felt it important to mention to us – something that fails all educators in their own knowledge and understanding of special needs which needs to be higher up the list of priority during teacher training! (in my opinion)

I’ve learnt a great deal in how to deal with her outbursts over the last year and as they progress, they are also decreasing in frequency as long as our attitude towards her and her behaviours are controlled; although I can’t control school and sometimes this can aggravate them and my husband finds it extremely difficult to understand and cope.
I am allowed to cuddle her but on her terms, when she asks – something I wouldn’t wish on any parent and have the greatest sympathy for any parent where their childs sensory issues are far greater and do not allow any touch at all. My husband very rarely is allowed to cuddle her, but on occasions she gives that spontaneous request which makes him very happy. I can’t say it isn’t hard to deal with, its heart breaking if you let yourself think about what others have and you can’t.

I digress – I want to tell about the temporary solution to her socks wearing.

About three weeks ago it go to the stage where she couldn’t find any socks that felt comfortable enough that she could cope with for the school day. She hates socks and we go through spurts of shoes being thrown across the floor, arms flapping, legs flailing and scraping on the floor and socks in piles where she’s tried and her anxiety and frustration have the better of her. On this morning I had to calm her, take the initiative and turned her socks inside out; this worked for one foot but not the other. After going through each sock one by one, I then turned it upside down and that seemed to work!

So now, each morning she goes to school with her sock inside out and upside down so that the company writing and heel of the sock is visible above her shoe at the ankle. But who cares about that when she’s started getting ready just that bit quicker and doesn’t have so many outbursts in the morning.

Secondary School Placement

I haven’t blogged for over a week. I wanted to ensure I blogged at least once a week but I’ve been tidying and moving around at snail pace. I do that every now and again, I go through spurts of laptop use or cleaning or not much at all. This last week I’ve been at school during the afternoons, volunteering and enjoying every minute. Today I spent the day tidying and cleaning for our daughters friend to come over after school. She is in Yr 6 and this was her first friend to the house since we moved in, back in 2007!

I have a few things to blog and must make a small note so I don’t forget – you can remind me if I haven’t done it by the end of next week. Our daughters issue with socks and the morning hassle and temporary solution.

Now for the main reason for this blog post: she has received her Secondary School allocation and she got her first choice. We are all very happy and she is excited – the school is brilliant and breaks the classes down from 30+ like most schools, to 17-23 depending on the groups ability. One of our main concerns would be her lack of organisational skills and as she hasn’t been diagnosed with any form of Special Need (although due to be seen by CAMHS) this school has a wonderful on-line homework log system where they show when its been set, when due, when tests are expected, when completed, what the homework is etc..

Anyhow, thats it – a quick post to shout to the world that we don’t have to fight or appeal, like we were expecting to.

Being a Sponge

It was in April 2009 that the signs of our son having any developmental issues in comparison to his peers became clearer. This was the point when we were told to not call him baby names as it was confusing him and making him think he was still a baby! In September 2009 we were informed we should seek advice from our GP and ask for a referral to the local Multi Disciplinary Team at our Community Hospital and in February 2010 we were informed he was likely to be on the Spectrum. Later in December 2010 we were given the diagnosis of High Functioning Autism, possible ADHD and definite Sensory Issues.

Initially I thought he had ADHD for his inability to stay focused and especially so with his later outbursts towards his Year 1 class teacher. He was going through stages of just staring at the wall and not responding, so at that point I was adamant he was having absence seizures which would have also accounted for his delay in development. During the assessments and whilst switching from one possible diagnostic idea to another I started to think that maybe he did have an ASD – mainly Aspergers, but wasn’t ready to put my neck out and let his teacher know that’s what I suspected, so continued with my previous suggestions and waited.

In February 2010 the Paediatrician said she thought our son was on the Spectrum and would be seen now by the ASD Multi Team to confirm. She’d spent 6 months liaising with us and the school to see how he developed and improved, realising that with all the evidence at that point the school wasn’t just being harsh (well, not in that sense anyway!) she passed us over to the rest of the team.

You can imagine the amount of web pages I went on to try to self diagnose our son; this ranged from ADHD, ADD, Sensory Processing Disorder, Absence Seizures through to Dyspraxia, Autism and Aspergers – if you create a search now, nearly every page that pops up that is more than a year old, I’ve probably read snippets of or all of it.
Night after night I read and read and picked out traits that matched this diagnosis and that but never quite fulfilling everything or the traits crossed over from one disorder to another. My husband was getting fed up with my need to keep looking and reading when even the professionals didn’t know and would refuse to listen to anything I said about any disorder that our son might have. His view was that until our son was given a diagnosis, he wasn’t going to stress himself out about it by reading things that possibly had nothing to do with him.

This is where he and I differ; I like to read all, everything there is – I need to know about every disability, I need to understand although in many ways I’ll never fully be able to relate with someone with it, but I can relate to the thought of it and any aspects similar that I see in me.

Once we finally had our diagnosis, I read book after book until what I was reading was duplicated information and a waste of time – at that point I gave up for a while. I read the following books from March 2010 when we were told he was likely to be on the Spectrum, until February 2011 when I re-started my higher education. Until then I soaked up all the information like a sponge; my hunger for information was enormous…

Reading list: –

Sensory Perceptual Issues in Autism: Different Sensory Experiences – Different Perceptual Worlds
 Olga Bogdashina

Communication Issues in Autism and Asperger Syndrome: Do We Speak the Same Language?
 Olga Bogdashina

The Autistic Spectrum: A Guide for Parents and Professionals
Lorna Wing

Asperger’s Syndrome: A Guide for Parents and Professionals
Tony Attwood

Cover of "The Way I See It: A Personal Lo...
Cover via Amazon

The Way I See it: A Personal Look at Autism and Asperger’s
 Temple Grandin

Cover of "The Out-of-Sync Child: Recogniz...
Cover via Amazon

The Out-Of-Sync Child
 Carol Stock Kranowitz

Sensory Processing Disorder Answer Book
Tara Delaney

Organize Your ADD/ADHD Child: A Practical Guide for Parents
Cheryl r. Carter

The Autism Sourcebook: Everything you need to know about diagnosis, treatment, coping, and healing
 Karen Siff Exkorn

I also read a few others but cannot find their details and can’t remember their names to search specifics but one was similar to the Ellen Notbohm book ‘1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s’ but about sensory play and not Autism.

I’m now on a break from my study until the middle of this year and for Christmas put a load of books on my wish list that I had read and wanted to keep or hadn’t read yet and wanted to.

Currently I’m reading: –

Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals
 Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy

Cover of "Sensational Kids: Hope and Help...
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Sensational Kids: Hope and Help for Children with Sensory Processing Disorder
Lucy Jane Miller

The following on my ‘to read’ list that I got for Christmas: –

to re-read: The Out-Of-Sync Child
 Carol Stock Kranowitz

The Out-of-Sync Child Has Fun: Activities for Kids with Sensory Integration Dysfunction
 Trude Turnquist and Carol Stock Kranowitz

Thinking in Pictures
 Temple Grandin

Emergence: Labeled Autistic
 Temple Grandin

Cover of "The Explosive Child: A New Appr...
Cover via Amazon

The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children
Ross W. Greene

to re-read: Sensory Perceptual Issues in Autism: Different Sensory Experiences – Different Perceptual Worlds
Olga Bogdashina

Occupational Therapy – Sensory Processing

Yes you’ve guessed it, I got our son’s OT report through the post today. I had to quickly read it, try to take a little in – then copy and add it to the rest of the paperwork for his Statutory Assessment request. As per last nights post, stayed up until late amending the question responses; today I copied everything, amended the OT details and this time got my husband to sign the sheets as well!

Anyhow, the OT report confirms that our son has various Sensory Processing Disorder issues and requires intervention, therapies, auditory integration etc. He has various proprioception and vestibular issues, posture problems; lots of little snippets to add to the big bits. To be honest, I thought the therapy advise was a little broad in information, but we have another 45 minutes with the OT to run through the report and maybe get a better understanding of the needs.

We then have to find some cash, work out what therapies we really need, want and start booking them up… seems like a few hours per week on various things over a course of 10 weeks – 2 years! I better win the Euro Millions tonight.