Thursday, September 26, 2013

Article: Navigating the Nightmare of Special Needs School Lunches

My latest post on Special-ism is now available.  It's all about how we changed our kids school lunches to be more "squish and forget" friendly.

If your child's school bag is always coming home with dozens of squashed and stinky mouldy sandwiches in it, then these changes could work for you too.

Click over to Special-ism to read the post.

Saturday, September 21, 2013

Child Support Essentials - Advocates

Child support essentials is a new series which looks at the essential roles in a special needs child's life, how they help the child and the ways they can hinder when applied improperly.

Advocates play a very important role in a special needs child's life. They help the child get access to support and services, they stand up for the child's rights and they promote the child's needs without damaging their self esteem.

In my opinion, the best advocates have a similar condition to the child they are supporting and they have a unique understanding of the child. I also think that the best advocates are free.

I like to think of myself as an advocate. I spend a lot of time trying to raise awareness of Asperger's syndrome and "bust the myths about it". I'm always fighting negativity and highlighting the positive aspects of Asperger's syndrome. My efforts are directed towards helping others to understand and to better accept the differences in those on the autism spectrum - and to help those on the spectrum to more easily fit in with the nuances of our society.

I don't spend a lot of time working with individual children, other than my own, to help them overcome their natural difficulties but I do help some in my capacity as a Cub Scout leader.

Most of my efforts are directed towards increasing the understanding of the adults who live and work with the children I seek to support.

Some advocates require payment and will then attend school meetings as an intermediary. We did this once and I completely regret the experience.

Bringing your own "expert" to the table to "take your side" will only increase tensions between you and the school. What better way to say, "I don't trust you" to your child's teachers than to bring someone with you to refute their every point. School meetings should be a place for peaceful cooperation and mutually beneficial advancement, not competition.

Sure, you'll probably have your "best school meeting ever" while the advocate is present as the teachers will agree to most of your proposals no matter how stupid they sound. Unfortunately, you're more than likely to discover that nothing has been implemented a few weeks down the track and the school will tell you that they tried the new methods but they simply "didn't work". You'll discover that you spent a lot of money and wasted a valuable IEP meeting just to hear the teachers pretend to agree with you for once - it's just not worth it.

Instead, use your advocates as sounding boards for ideas or resources for questions. If possible, offer the advocate as a resource for your child's teachers; someone they can ask questions of too. You'll find that the best teachers will really appreciate you providing them with an independent expert and will make use of your advocate at least once. Anything that you do to increase their knowledge of autism in a positive way will help not only your child but all others they come into contact with throughout their teaching lives.

A good advocate won't let emotions get in the way of truth and  if they're not related to the child in question can often offer unbiased advice and insight that can make a real difference in your child's education.

Friday, September 6, 2013

Interviewed on One Quarter Mama

There's an interview with me up on the One Quarter Mama blog,

Click here to read it.

While you're there, have a good look around the site because the One Quarter Mama blog is really very good. It's written by a mother with autism who has a child on the spectrum and is written in an honest and engaging way with a dash of humour for good measure.

Wednesday, September 4, 2013

When Playtime Turns Bad (Saving the Toys)

A couple of weeks ago I packed up my kids toys. It's not the end of toy playing for them but the toys are going on an extended hiatus.

It's not even the fact that in all the years they have had them, they've never cleaned them up, despite promises of rewards or threats of punishment. After all, we solved the "Lego underfoot" problems by giving the kids their own toy room which we can easily close the door on instead of cleaning.

Nope, it's because both boys have entered a destructive phase which I remember from my own childhood.

For me, it all came to a head when I visited a friend's place and we watched TV together. There was
This advertisement for "battle damaged derby cars" which sounded incredibly cool. Of course, my parents had financial issues; dad was out of work and my mother hadn't worked since I was born. There was no chance of getting the cars and even if there were, I'd be waiting about 10 months until Christmas.

The next week at school, my friend kept talking about how he was going to convert his matchbox (die cast metal) cars to be "battle-damaged" and then a day or two later he told me how great they turned out.

I knew my friend was a pathological liar because he'd often tell unbelievable stories, like how he rode his bike faster than all the traffic but somehow I didn't think to question his honesty then.

The next weekend, I took my suitcase full of precious matchbox cars into the garage, chose a couple of cars that  I didn't love quite so much and I took to them with a hammer.

I failed. They simply crushed and their wheels broke off. They didn't give the authentic "battle damaged" look I was after. I decided that it was something I had done wrong and gave it another shot with some different cars. I failed again.

I tried over and over again, with the hammer, chisels, screwdrivers and all kinds of other things thinking that if my friend did it so easily, there must be a problem with me.

Finally, only my very favourite cars remained. Everything else was destroyed. It was then that I snapped out of it and realised what I had done to my beloved toys.

I knew that I had to get rid of them but I couldn't put them in the bin or my failure would be discovered. I decided to put them all down the drain in the street.

So there it was that my parents found me crying and putting all my beloved cars down the drain. I never explained why, I simply didn't have the words to express it. I was disciplined and my parents never let me forget the incident but I didn't need disciplining. I needed understanding.

My parents told everyone around me and many people said to me that I was wasteful and that if I didn't like my cars, I could have given them to their child. They never understood that I loved those cars and that there was a psychological reason for my actions.

I held onto my last five cars until I had kids and I passed them onto my kids, who eventually broke them. I never played with them again though because just looking at them reminded me of one of the saddest days of my childhood.

This all brings me back to the present. My kids love Lego. It's the most played with and most frequently requested of all their toys.  Of course, being 10 and 13 now, they're starting to turn to other indoor pursuits like gaming and the internet.  This means that the lego is being played with less and is being picked up even less than usual.  About six months ago, I picked up all of the lego and noticed a disturbing trend. My kids had disassembled all of the lego people, lost most of the pieces and chewed many of the others. By disassembled, I mean down to the smallest pieces, detaching the arms from the shoulders and the hands from the arms so that they're no longer recognisable as "pieces of people". I reassembled the people again as best I could and told the kids not to do it again.  Adding, that if they did, I'd remove the lego for a long time.

Recently we needed to make some changes around the house to make some more room, I decided to clean up the lego and to my horror, I found three intact figures. The rest I collected into a bucket (carefully separating their pieces from the rest of the lego - a process that took nearly three weekends on my knees). One day I'll work up the stamina to reassemble them.

I've decided that my kids playtime has turned "bad" for the lego. I'll give them back in a year or so when they're older and more appreciative (and more responsible) but in the meantime, I'm doing things to protect them from themselves. I don't want them to look back and regret their mistakes like I did.

Sunday, September 1, 2013

Book Review: We Said, They Said: 50 Things Parents and Teachers of Students with Autism Want Each Other to Know by Cassie Zupke.

We've been through the IEP process many times for our kids. The IEP meetings we have now are fairly productive but both of my kids suffered for the first couple of years because we didn't have an effective working relationship with their teachers. 

As parents we had certain expectations and as teachers, they had their own agenda. My wife and I would often talk about how much easier things would be if teachers just told us their plans.  Of course, at the same time, we didn't realize just how much we were leaving unsaid.

"We Said, They Said" is a book in two parts. The first part contains 25 things that parents really wish they could say to teachers while the second is 25 things that teachers wish they could say to parents.  Reading through these, I saw myself and my wife in many of these - and I reached a much better understanding of the motivations and pressures of the teachers.

The book starts with an introduction which is essentially a seven page disclaimer. I'd strongly recommend reading it because it sets the scene and puts your mind in the right places. In this book, we leave political correctness behind for a while and spend some time looking at reality.  It's well worth it.

Of course, this also explains a little about why parents and teachers don't say these things to each other. Many of things they'd like to say could be taken the wrong way, many are politically incorrect and some things are downright illegal. Teachers have a lot of rules around their code of conduct which could land them in very hot water if they were broken.  This book gives some great examples of how teachers try to communicate this information less directly. It also gives parents a few really great pointers on the types of questions that they can and should ask to get results without putting teachers in an uncomfortable legal position.

The parenting section covers many of the hardships of raising a child with autism, the fears that parents have, their trust issues, they way they have been "burned" by professionals in the past and the challenges of acceptance and exhaustion.

On the teacher's side, the book talks about how they really feel with special needs kids in the classroom, their difficulty coping with new challenges and the various ways in which parents of special needs children make their job so much more difficult.

It's a fascinating and eye-opening experience which has helped me to understand many of the blunders I made during the IEP process.

I'd strongly recommend that all teachers and all parents of mainstreamed kids with special needs (not just autism) read this book.  It will completely change the balance of the IEP process and your relationship with the school. In fact, I can think of no better way to kick-start the school process for a new year and new teacher than to read this book and then give a copy to your child's teacher to read before your meeting.

We Said, They Said: 50 Things Parents and Teachers of Students with Autism Want Each Other to Know by Cassie Zupke is an enlightening and breezy read with excellent formatting.  It's available in paperback from Future Horizons and from Amazon.

Honesty disclaimer; I was provided with a review copy of this book.