Ranting on Facebook

So today I had a rant on Facebook. What about? The media of course! One of our national media outlets has decided to make this "let’s report on Autism week." First it was about a new "cure" that seems suspiciously like electroshock therapy. Then the advertising regarding a famous footballer’s son that sounds suspiciously like the story is going to be about yet another cure. Then, what else but the good old over diagnosis debate? Lumped right in there with ADHD and on the back of comments by an NGO that claims to be promoting Autism awareness!

I'm so tired of the way Autism is portrayed in the media. It appears if you are famous or a sports person it is okay to have a child with Autism and it is not about parenting but it is always about cures. Fact is any treatment that is reported is out of the reach of the average Australian family or is simply fraud to make that person more money or make them feel better about themselves AKA Jenny McCarthy.

Lumping Asperger's in with the ADHD debate is damaging and hurtful to those parents trying to do their best with a condition that has nothing to do with parenting. I think there are two types of the disorder to be honest, one where the child is predisposed and has a family environment that promotes the development and the child that has for some reason some biological basis to their disorder. Children with Asperger's are not "badly behaved". Actually in my experience it is the so called neuro-typical children and adults that treat people with Asperger's badly!

Bullying

I am writing this and sharing this photo to take a stand against bullying. Gi Jo is too scared to make for himself. In 2010, when Gi Jo was in grade six he received this head injury courtesy of some boys who thought it was okay to smack him into the concrete because they believed that him bending over talking to ants was weird. Before this, they had been his friends. They justified this behaviour by saying they felt "betrayed" that Gi Jo did not inform them of his ASD and it was not until they saw him in the special ed unit that they realised. This started an ongoing series of taunts and social isolation. Most of it, I wasn't even aware of until recently, when GI Jo took a drastic measure to attempt to illustrate to his tormentors what he had attempted to express through his words. His behaviour became the focus and the consequences were that he now has become more socially isolated as a result because we feel that distance education is his safest option.

When I think of what happened my mind goes to stories in the media about other young kids that resort to violence and/or suicide to attempt to deal with bullying. I do not condone violence in any way and I am saddened that some young people take their lives rather than feeling that adults can help them. However, that is exactly the point that I am making. These young people become so desperate that they act in these ways. I  can not help thinking that teachers are too caught up with paperwork, process, and stress and parents in maintaining their lifestyles and dealing with other external pressures that the unspoken cues are missed. I could forgive that, I can forgive ourselves for missing the unspoken cues with GI Jo. What I can't forgive is the ignorance of the possible outcomes. We warned both schools at various times when certain behaviour from the other young people was coming to our attention. I have the above photograph as I was forced to email it to the school to demonstrate how serious it was that no one contacted us or supported our family and our boy through this. I had to threaten to make a police complaint for it to be taken seriously, even then the school never followed through on their promised conference with the boys involved.

People becoming teaching professionals often ask me how to prepare for having children with ASD in their classes. This is what I now say: Watch closely for the bullying, don't ignore it, watch for unspoken cues that indicate there is a problem with peers, listen to the parents of the child, act before it is too late.

The curse of the Mummy Judgers

For anyone who has ever had a child, whether they have special needs or not, they have no doubt had the displeasure of being judged by other mothers (or worse by a know it all non-parent). Topics such as breast feeding, cloth or disposable nappies, dummies, and circumcision are sure to raise a barrage of debate. In this age of the Internet and social media, it seems those who judge most are most visible, in the written sense at least. If they are pulled up on their judgement they fire back with freedom of speech and a heap of crap about "if you don't want it judged don't write it...." *blah*.

The other day I was questioned about my choices with GI Joe. I was able to defend them in a calm and reasonable manner but why should I have to. Unless you are tying your child to a tree (the thought has actually crossed my mind) or abusing them, no one has a right to interfere with your learning process as a parent. As a social scientist I often cringe when anecdotal evidence is pulled out in an argument but I think most adults with a non-abusive childhood can pull out some examples of  their own parents' parenting mistakes but end the story with, "and I turned out okay." Two of my children have developmental delays but all of my children are turning out okay! People need to be supportive and not judgemental or I fear we may see a society too scared to take risks based on what other people may say!

A really hard week

This week has been incredibly emotional. Not to go too much into details for GI Joe's privacy, but we were thumped on the head with the knowledge that he has not been going as well as we thought he had been. I wish that we had known how tough he was doing it. We have made the decision to home school through distance education. A hard choice and one that GI Joe is not entirely happy about. I have learnt the true impact of bullying on people with ASD, their family and the community in general. It seems we are becoming more and more educated on ASD but perhaps this is not getting passed on to our teens.

The Little Things

It's amazing the little things that can make a difficult day better. The photo above was a day at the beach. We hadn't been to the beach much as we have runners, so it requires a quiet beach and eagle eyes. We did not realise how much Baby Yoshi would love it. I need to remember this day in times when I'm am struggling. Baby Yoshi has been particularly echolalic lately. I don't care if it is politically incorrect, whatever, but echolalia is the thing that makes me cringe when it comes to ASD. This week Baby Yoshi had a fire truck visiting school, he was anxious that he was going to miss out on the experience (may have been anxious about the noise possibilities as well). When Baby Yoshi is anxious he verbally names the object of his anxiety...over and over and over and over. After the event he had to reassure us a lot that the fire truck was okay. I went shopping and spotted a fire hat. As soon as I gave it to him he said he loved it and it must have been enough to focus his thoughts because there has been no mention of the fire truck since. Hopefully he won't expect to see the fire truck again next Tuesday! Last year, we had to put a "crazy shirt" in his bag on Fridays, every Friday for a month before he realised that crazy shirt day was only a one day event!

The Back Story

I have started this blog with a couple of insights into my life now, but realise that there is not much of a hint of who we are, who I am and how I came to be sharing this journey.

GI Joe

GI Joe is my oldest, he is turning 15. I was a young mum, not a lot older than he is now but when I found out we were pregnant, I was very excited. He was born into the world by a Cesarean as he was determined to be different from the start (breach). As much as I adored him, there was just something I could not put my finger on. I did think I would get the magical eye contact, the gazing down and looking longingly into his beautiful big eyes and that it would be instant love. GI Joe was having none of that, he wriggled away from my embraces, arched his back, screamed and looked everywhere but at me. The only time he would gaze longingly at anything was if it was shiny. I never forget my mother in law taking him to the doctor for me and commenting later that he stared for an hour straight at a door handle. He had reflux and on more than one occasion the pediatrician queried if I had post natal depression as he like me was not picking up on a lot of warmth between me and my little man. I loved him with every fibre of my being but  every time I got close to him he would cry.

Toddler-hood came and we had a happy little family of three, in our ugly little renovator. I desperately wanted  baby number two but it just wasn't happening. I was working in child care and GI Joe came to the centres that I worked in with me. Comments from other workers about his behaviour started, "He did the oddest thing today." "Do you think he needs to be assessed." Being in full denial at that point in time, I decided that I would put him into family day care. The issues continued there for a while, until we met the most patient lady in the world, Inga. Inga, I now know could see it all along. She knew it was Autism but she knew we didn't know and at that stage didn't want to know. She looked after him for a year and during that time baby T-Man came along......

We had no choice, we had to accept GI Joe was different to the other kids. He hated T-Man, wanted to kill him, hated me for changing his routine, hated me for bringing something noisy into the world.......

One day I went to playgroup, I was tired, trying to feed T-Man and it was pack up time. GI Joe lost it, the epic of all meltdowns. A lady named Kathy (with a non-verbal autistic boy) dealt with GI Joe while another lady (can't remember her name) came over. She looked up at Kathy and said, "It's time."

"Time for what?" I asked in tears. She sat there and told me how she had watched me, they had watched me struggle with GI Joe whilst doing all the right things as a parent. She told me that I needed to go now to the doctors and get a referral to have him assessed. She told me that she didn't care if I didn't like her any more, that someone had to tell me. I agreed that I was struggling and called the doctor there in front of her. I thought the doctor would dismiss me, our doctor we had since before GI Joe was born, he didn't, he was relieved. As GI Joe was still melting down while we were there, he became concerned and called our  pediatrician, who was also relieved and who got us in straight away. GI Joe destroyed the pediatrician's office! We were sent straight over to the developmental unit at the hospital, where he bit the developmental pediatrician and ripped down the curtains in the exam room. He was assessed, had an EEG and bloods, and a  speech pathologist and psychologist saw him on the day.

Two days later we got the call and the diagnosis...Autism.

There was all the usual emotions, ones you feel guilty about but there was also confirmation that I was a good mum and his dad was a good dad, we were good parents. We have had many tough times with GI Joe but he is a beautiful boy. He is in full denial of his Autism at the moment but I watched my beautiful cousin Miss Molly (http://missmollyandaspergers.blogspot.com.au/) go through the same and I know eventually, with support he will accept it.

Baby Yoshi

Well baby Yoshi's story is a lot shorter as he is only six. We picked up on his behaviour's fairly late in the game, he seemed to develop okay. Baby Yoshi has good speech (the best out of all our children) and was settled in a routine. The similarly to GI Joe a change of routine made us face that there were issues. Baby Yoshi is a lover not a fighter. Personal space is not something he has learnt. Neither is staying still. We started out with a diagnosis of ADHD but the enduring patterns of fixed routine, meltdowns in most social situations, and fixed interests (Mario Bros is the current obsession, hence the Baby Yoshi nickname) had my pediatrician querying Asperger's.  As I have a degree in Psychology the doctor was open to suggestions and my opinion. I waited some time and then called him and told him that I agreed and that I would like him assessed accordingly. The diagnosis was confirmed and we are doing the tough early years with him. I never understand the idea of early intervention stopping at six. I know we have a few more hard years ahead.

T-Man and Princess

T-Man and Princess are not on the spectrum but they are worth mentioning. I think that job of being siblings in a special needs family is a hard one. T-Man has it particularly tough so sometimes his behaviour is harder to deal with than the other two boys put together. I am sure other parents have children with middle child syndrome, but I wonder if it is as bad when the other children don't have so many challenges. He is bright, engaging, and funny.

Princess was a lovely little surprise. All of the boys adore her. I have never seen any one bring GI Joe out of his shell like she does. I hope that continues, it is the most heartwarming thing to see. I think he knows she just loves him for who he is. She's picky about who she attaches to so I think that helps him feel special and loved.

A Break

Today I got a break, nothing special, just went to buy our little princess a second birthday present. Anyway, when I got back Baby Yoshi was in full swing. I think he thinks he owes me one for going out. I was attempting to do something with my iPhone and getting quite frustrated. I found myself matching him tone for tone, never a great thing when your children are overstimulated by sound (hey we are all human). This chaos prompted Daddy to chime in. In his usual style, he tells Baby Yoshi I have "lost my marbles." Baby Yoshi promptly began to discuss a time where he had some marbles, lost some marbles, then found them under a pile of old toys in the shed. Where can you go with that but laughter! Daddy did try to explain what it meant but Baby Yoshi simply said, "That is a silly saying, you can't have marbles in your head, and so you can't lose them from your head." He's got a point!