Perspective....part 2 - Rainer's story (eek, long post)

Some know this story, but when AEIOU asked me to write Rainer's story for their website, I was a little honoured but it also brought up a lot of tears, sadness, guilt and frustration.

I don't think those feelings will ever go away. I read this again today and feeling a little low. I don't like to think about the past too much but it needs to be said so it might help other mums or friends of mums who are going through this.

Meet Rainer
Wed Jul 30 2008

Rainer seemed almost the perfect baby - Able to sleep for long periods and without much fuss. Breast-fed like a trooper and even put himself to bed when he knew his older brother was coming home from Kindy at 4.30pm, and woke at 2am for his next feed. I thought to myself, "Here's one special boy, who is bright, perceptive and will do great things in the world.”

Rainer smiled in photographs, played with some toys and watched “ABC Kids”, but never seemed to WANT to play with others. He began to develop repetitive behaviours and obsessions with particular toys - Thunderbird 2 is still a firm favourite after all these years. The dozen or so words he was saying, were slowly disappearing and being replaced by baby-ish shouting, as a 12-month-old would, to gain attention.

After Rainer's first birthday, I was looking to return to work and put Rainer in Day care one day per week. This was to become the start of the road to seeing Rainer’s Autism. He never played with others, became attached to one particular carer, would not sit at group time or meal times. He could feed himself with a spoon and open and close containers (which others in his group couldn’t) but the socialisation was not there.

He began to lash out at the other children if they simply stood next to him, touched his toy or if he had to wait his turn. His speech descended into nothingness and the calls from some parents to have Rainer expelled from Day care sent me into a combination of rage and despair.

I knew he wasn’t a BAD child, he just needed a different approach. Luckily a new carer began in his room and she started documenting what set Rainer off during the day – what caused him to bite another, fly into a rage and exhibit odd behaviours. Without this information, I don’t think we would have had the diagnosis as early or quickly as we eventually did.

I promptly finished my contract and began the exhaustive task of finding out why my boy was different. I began taking him to Playgroup and although the Mums understood, there was never a moment where I could sit and watch from afar. I spent every moment at Rainer’s side, helping him to interact with the other children and watch how he played in an unfamiliar environment. I noticed that he was NOT playing WITH the toys, rather, moving them around in an inappropriate way. Trains moved like planes and visa-versa, balls were collected not thrown and painting took on a whole new dimension!!

Something wasn’t “clicking” in Rainer’s brain but I persisted in exposing him to as much as I could. I became, however, more drained which made me less inclined to deal with any number of Rainer’s episodes in public. I shopped for groceries online and only went out of the house for emergencies. Rainer enjoyed the car and his stroller, but they soon became battlegrounds. Getting him into his seat sometimes became a battle of strength as he stiffened his body and I worked up a monumental sweat to seat him. He damaged a number of strollers due to his thrashing if he didn’t like where I was going or I stopped for a chat somewhere.

It was breaking point for all of us, including his brother. At some point I remember hearing the word “autism” but only had experience with student who has Aspergers (another type of Autism), and I knew this wasn’t AS.

The order of events are now a blur, but I do recall visiting Rainer’s Paediatrician who observed Rainer at her office (which I was dreading) and asked a series of questions and then completed a questionnaire with us. This was to be the breakthrough and possibly an acknowledgement that we weren’t BAD parents, and Rainer wasn’t a spoiled brat or neglected.

We immediately enrolled him into the Special Education Development Unit, but the idea of “early intervention” for a child with Autism Spectrum Disorder at age 2 ½ , was a couple of hours once per week. We began looking for another place to supplement this weekly playgroup but we had to negotiate an Aide and then find a Centre who would accept Rainer with the Aide. More paperwork and interviews, but it happened.

We had Rainer on the waiting list for AEIOU and with the gains he was making at the C&K with his Aide, happily leaving me in the mornings was a HUGE step, we were quietly hopeful but at the same time nervous due to the number of children with Autism and the scarcity of places in AEIOU.

Happily, in Term 2 of 2007, Rainer began his full-time early intervention at AEIOU. In that time since, he is beginning to say words, is more attentive and will sit to read a book or sing a song. These may seem like small things, but to a Mother of a child with Autism, they are overwhelming. Rainer sometimes whispers “I love you” but you have to be very quiet. He comes up to cuddle us and only recently has he played appropriately with his brother and most of his toys.

An ultra-light aircraft flew over our house recently, a common occurrence, but Rainer has never once looked sky-ward to show any interest in what was up there, even commercial aircraft. Last weekend, for the first time, Rainer looked skyward and pointed at the ultra-light. I think I cried…..I was too shocked to remember. I called for my husband and we waited for the craft to fly over again, which it did. But Rainer didn’t look up again. That’s okay. At least we know that he is aware of what is going on around him, and that even for a moment, he is interested.

Autism is a condition that did sneak up on us and Rainer. Maybe he already was Autistic but we haven’t located the one “lightning bolt” moment that made it reveal itself in all its frustrating glory; the moment we thought, “Oh, there’s the Autism!”. He will never be “cured” of his Autism, it is something that we manage now and he’ll have to do as he reaches adulthood.

AEIOU has given us the resources to begin that journey with comprehensive early intervention, and we are confident that Rainer is still bright, perceptive and will do great things in this world. How special he has come to be for all of us.

So, now it's all there - in the public arena. The reason I quit Teaching (most of my fellow staff members and students weren't told and probably still don't know) and became the full-time Mum I am today. The reason I cry every day and get very little sleep. The reason I am forever on this bloody computer, sending emails to specialists updating them on Rainer's progress, researching food, biomedical research, vaccine ingredients (that's enough to scare anyone) and cheap organic produce.

And it wears me down.

But I have my creative outlet!! And I'm forever grateful that I have this, to escape....really ESCAPE. So I don't do this scrapbooking and other bits and pieces for future generations....I do it for ME!!! This is my legacy, not others'. And it's the only time I can be truly SELFISH.

Well, the partying with my girlies also helps. I think it's the anonymity of it all. Be whomever you want and then close the book and go home. Ahhhh, what a luxury!

Look what I made the other week:


More on how and where later.
Thanks for reading to the end....needed to record this somewhere for all eternity (blah blah blah).

brighter and buoyant....onward and upward....
p.s. in the words of Sparkadia "if you just can't trust yourself more than anybody else, the kiss of death is only but a breath away...." thank the lord for luscious indie pop gods!!!!