Guest post: Aspergers and Home Ed

When Prue from Adventures in homeschool asked me to write a guest blog post about our home educating adventures for with a Special Educational Needs child I told her I don’t do anything differently really, I was at a loss as to what to write. But then I realised that to get where we are now, four years in, we’ve been on quite a journey. I’ve had to find various keys to unlock my child and I’ve used many different resources and methods in order to do that… So here is the ‘abridged’ story so far!

I have a large family, Elizabeth is 9, Imogen is 8, Leon 5 and Oona just 15 months old. Elizabeth went to school for Reception and one term of year one and Imogen (being just one school year behind Elizabeth) just did one term of Reception.

Our reasons for taking the children out of school were many See here but were mostly to do with my eldest child’s inability to cope within the system. I don’t mind telling you, I am an ex Secondary School teacher and placed a high value on the opinions of Ofsted and felt that the children attending an ‘outstanding school’ was of such high importance that we moved house so that Elizabeth could attend one. I was quite anti-home ed and believed in the Education System. However, the system didn’t fit my child and trying to make my child fit the system was slowly destroying my child and my family. I now realise there are many people for whom the system will never fit and for this reason I no longer believe in it. I respect anyone who has the gumption to do home educate rather than let the system destroy their kids.

We knew Elizabeth had High Functioning Autism or Asperger’s when she was in Nursery (as I said, I am an ex teacher and what I didn’t mention is Paul, my hubby is a counsellor and psychologist so we both had experience in this area and recognised the signs) and so we felt that as soon as she had an official diagnosis things would become much easier for her in mainstream education. Boy was I wrong! Asperger’s doesn’t affect the child’s ability to do the work provided, kids with Asperger’s are very bright so Elizabeth didn’t struggle at all in lessons and they refused to set her up with a Statement of Special Educational Needs. Her issues were all anxiety related. She would scream in the dinner hall (in order to drown out the noise of cutlery and kids echoing around the hall we think). She would lash out at other children on the carpet if they accidentally touched her (she didn’t understand accident vs deliberate) she would rearrange the teacher’s desk so that everything was in size order!…I could go on…suffice to say by the end of it her behaviour was terrible, and her home life was awful, she just screamed refused to eat, threw tantrums and was a little ball of stress and fury.

When we eventually took her out of school she was very underweight and she had extreme problems with anxiety. At first I went in very structured with lists and plans and everything was full-on however after 3 weeks we all hated each other, the kids were fighting and nothing was much better. So I did something I found (at the time) very difficult to do: I backed off. When the kids asked “What are we doing today, Mum?” The answer was “Playing”. I had to teach them to play. We went right back to toddler basics of ‘kind words, kind hands’ and if they fought over a toy I just quietly packed it away. It took about 3 weeks until they finally were able to play without any intervention from me. I couldn’t get Elizabeth to even open a book (any kind of book) even if I was reading it, she was so dis-engaged from learning.

At the time I was a member of a Facebook group which was a very busy group but is now quiet called ‘Asperger’s Soup’.  There are some strong online communities of people who identify as Aspie and many of the groups are extremely supportive to parents of children with Aspergers I think because they want the Aspie kid to be understood as perhaps they were not. I got a lot from this particular group. The first and most important was in the event of a ‘melt-down’ remove stimulus. Sounds like a really simple thing to do but it isn’t really. It’s hard to get a screaming thrashing child out of a busy area and into a quiet one without injuring them or yourself! But this was my first step on the ladder to dealing with my kiddo. So this was what we tried to do. I created calm areas such as pillow corners and squish boxes and tried to look for signs of a melt-down before they happened so that I could stop it before it started.

We basically tried to take the pressure off her and provide an environment where she felt safe and secure. Really, for Elizabeth it isn’t Asperger’s that causes her anxiety issues. Asperger’s means she is really bright with an excellent memory for numbers and for reading. The most debilitating co-morbid Elizabeth has is Sensory Processing Disorder which was the main reason for her stress in school: too much noise from too many different sources, too much to see, too much to process. We were having some of this at home too, but on a smaller scale.

So I read and read and read!

Some of the most useful books I have on my shelf:

The Out-of-Sync Child: Carol Stock Kranowitz

  • Explains SPD and describes symptoms and reasons for these. Offers some strategies to help

Asperkids: Jennifer Cook O’Toole

  • Written by a mother with Aspergers about how she home educates her Aspie children

Too loud too bright too fast too tight: Sharon Heller

  • One of the first books I bought re: SPD. Reading this one made me realise I have it too!

Sensory Integration and the child: Jean Ayres

  • Helps identify the AREAS in which your child is struggling with regards to SPD

Ten things every child with Autism wishes you knew: Ellen Notbohm

  • A very basic book, suitable to give to the child-minder, Nursery or Grandma in order to better explain Autism

Freaks Geeks and Asperger Syndrome: Luke Jackson

  • Written by a 13 year old Aspie boy. He is very funny and likeable and the book gives an insight into the mind of an Aspie. Mostly though, it’s just a lovely read!

Look me in the eye, my life with Aspergers: John Elder Robinson

  • John Elder Robinson’s family was pretty dysfunctional to start with, but he also has Aspergers. A good read.

The Curious Incident of the Dog in the Night-time: Mark Haddon

  • Whitbread book of the year 2003: brilliant. ABOUT an Aspie kid, but Mark Haddon isn’t Aspie

Thinking in Pictures: Temple Grandin

  • Another interesting read: Temple Grandin’s mind works differently to other people. It wasn’t much help with understanding Elizabeth because she is very different in lots of ways from Elizabeth. But still very enlightening

The Sensory Team Handbook: Nancy Mucklow

  • Aimed at teenagers with Sensory Processing Disorder, I could see that the book was very good, but it wasn’t directly useful for us. I did take some ideas from it and if your kiddo is 11-15 I would say it’s a definite MUST buy

And the two best for us:

Understanding your child’s sensory signals by Angie Voss

  • This book is FANTASTIC! Really simple to understand, so much so that Elizabeth took my copy and read it. It is set out in a really helpful way: at the top of the page it lists the problem e.g. ‘loves to hang upside down off of things’ and then underneath it gives lists of things you can do with the child to help with this. Elizabeth sat with me for half an hour whilst we put post-it notes on all the pages relevant to her and then went off to read it for herself. Brilliant book

How Does your Engine Run? Mary Sue Williams and Sherry Shellenberger

  • This is a teacher’s guide. It is written for groups, really and has a lesson-plan style format to it. I would read a chapter in bed at night, make notes and then teach it to Elizabeth. It is very, very good, describing to the child that their system is like an engine. They must identify whether they are running fast (giddy, excitable, angry etc.) or slow (tired, floppy etc.) or just right. Once they are able to identify how their engine runs the next step is to teach them how to control it.

 

I took her to Glasgow to see Ian Jordan at his multi-sensory optical practice and she wore blue lensed glasses for about 18 months. (She now refuses to wear them)

I fought for her to see an Occupational Therapist after a referral was made to OT via the consultant and they sent a letter to say that OT for SPD was no longer funded. I went all the way to the top at Lancashire County Council and demanded that Elizabeth be seen. It took me about 8 months of emailing and phone calls, involving our local MP until finally they funded two appointments with a top children’s OT who specialises in Sensory Integration:  Julia Dyer She did a lot of work with Elizabeth around her sleep issues and helping me to meet all of Elizabeth’s needs. She gave me the ‘How Does Your Engine Run?’ book, listed above and was there for me whenever I had questions about how to implement the suggestions in the book. The book and the OT work is about empowering the child really, so that they can tell when they are becoming ‘dis-regulated’ or out of sync and can put measures in place for themselves so that they are able to self-regulate. If you are nervous you might chew your pen or swing on your chair…these are self-regulatory tactics which help us to remain calm under pressure. Look back at old Manchester United games where Alex Fergusson is watching the match on the side-lines and you will see him madly chewing gum! That’s his way of helping to keep calm. He might not know that’s why he does it, but he’ll do it instinctively. SPD kids don’t have these neuro-typical instincts to keep themselves calm. Before Elizabeth does any formal learning she goes on the swing or bounces on the trampoline (linear movement is calming) or if she is watching TV and has been sat still too long you will see her turn upside down and dangle off the side of the settee! Again, its methods she has found to regulate herself. They’ve been hard learned.

So…I suppose I have to admit that we are an SEN home ed family even though I don’t print off work sheets in different colours or differentiate work as I did when I was a ‘proper’ teacher with SEN kids in my group. I don’t even have to have to actively prompt Elizabeth to go regulate herself very often any more. She is quite difficult to deal with and still has melt-downs and screaming fits where I cringe and hope the neighbours don’t ring social services…but on the whole she lives and learns and is happy day-to-day. We generally focus on the special skills in our family and quietly help with the things we struggle with. Why focus on what they can’t do? Yes, challenge them, yes tell them to keep trying, and not give up! But celebrate what makes us special in a POSITIVE way.

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