Thursday, September 23, 2010

When you learn your child has Autism

I was pregnant with my second son and I went and attended a child health clinic where the nurse was teaching me a course on Positive Parenting. I had my toddler there with me, and she noted that he wasn't talking. He was two and a half, and I didn't really know when to expect a conversation out of him - being my first child. I half dismissed her comment, telling her that he would be right. But it sat at the back of my mind.

My younger sister in law is a special needs teacher, and her older sister is a primary school teacher. They also commented to me around the same time, maybe a little later that I really ought to go and get my son checked out for his hearing, because he should have been talking by the time that he was two and a half. So, I ended up in the paediatrician's office. We went to the hearing laboratory to check that out and his hearing was cleared - so we ended up at the speech therapist.

I remember driving around a roundabout with my baby and toddler in the back seat of the car, going around a couple of times, crying - because "something was wrong with my son!!" It is devastating to learn that there is anything wrong with your child ...

To cut a long story short, my son attended the early childhood education program for special needs children, under the category of speech language impairment. He never had a real conversation with me until after he was seven.

I sent him to a preschool around the corner, after he had graduated from the early childhood program. The teachers at the early childhood program were pressed for funding, and Caelon was going to be attending a private preschool, so he was discharged from the early childhood program.

I thought that everything was fine, until I attended the mid-year parent teacher interview. I remember the lovely young teacher looking at me sincerely, saying that she thought I needed to go and have a review with the paediatrician. Apparently all my son ever did was sit in a corner quietly by himself, and never spoke to anyone. He never participated in any games, and had little rituals that he needed to do. He was also notoriously difficult to toilet train, and had massive tantrums at home, and at school.

I ran over my cat one day (she survived) because my son had a meltdown at the preschool, and I put my youngest son in the car, and quickly backed out of the driveway - they told me that I had to pick him up, because he was hyperventilating. (I think he was having a panic attack-meltdown thingy).

Anyway, so back to the paediatrician - my son was then formally diagnosed with Autism. He wasn't speaking, wasn't interacting, and had all kinds of behavioural things.

I remember sitting at a party that my son had been invited to (the only one he has ever been invited to) and sitting quietly to myself. The parents around me were talking excitedly about how their children would be going into the first year of primary school soon, and my son was going to be enrolling in a state school with a special education unit.

A guidance officer had done an IQ test on my son, and told me (without him knowing) that my son's score was typical of a child with Autism. I then confirmed to the guidance officer that in fact - yes - my son was diagnosed by a paediatrician and an allied health team as having Autism.

I used to cry loads and loads, that although I spent hours at the occupational therapist trying to teach my son different skills and improve his muscle tone and fine motor skills, and get him toilet trained, and hours working with the speech therapist - and doing our home programs, and trying to deal with his younger brother (who was very very full on - and later diagnosed with Aspergers) - I was devastated and wondered if my child would ever talk to me. I felt very alone.

I joined a local support group - and became their president for a while. That helped a little - to share with the others. But I had my own issues going on - I had been diagnosed with a mood disorder, and I was trying to manage that while I looked after my eldest son with Autism, and try to cope with his younger brother (who also had some health issues with his kidneys, and very challenging behaviours).

It all became too much for me and the bottom dropped out ... I tried to take my own life.

Thankfully, it was unsuccessful, and I am still here to be able to tell you that although it is difficult, that you will get through it.

I have found a new found hope in my faith, and I have also put more supports in my life that help me to cope ...

Not long after my overdose, and my second son was diagnosed with Aspergers, my husband and I bundled up the two kids, and went and saw a social worker. He was very kind to us, and uttered some words of hope. I had been told by somebody that my youngest son probably had a reactive attachment disorder, and I felt devastated to think that I found him difficult to cope with as a baby, and resented how he cried all the time.

The social worker told me that every day that dawns is an opportunity to renew your bond with your child. Last night my youngest son sat down together with a hot chocolate each, and I read him a chapter out of Wind in the Willows (my favourite childhood book). He said a little prayer, and told me he loved me. I hugged him and told him I loved him - we now have a wonderful relationship, and enjoy doing all sorts of cooking of different things (specially things that involve chocolate). So that gave me great hope, to think that I can bond with my son, despite our difficult start together.

As for my eldest son, did he ever speak? Oh yes, he just told me he is going to invade my room and play the Xbox 360. He is still very shy at school, but he copes with a largely mainstream curriculum, with teacher aide support, and literacy and numeracy skills learned in the special education unit. He can read and write, and is very good at remembering a huge volume of facts. And he talks to me all the time about his favourite animals. He is starting high school next year, and wants to go on to have a career looking after wildlife.

My youngest son wants a career in movie making - he is extremely creative, and he sits down and writes little stories that he then sets up some action figures in the middle of the lounge room, and films them with his little flash memory camcorder, which he helped to save up for.

What is the lesson in all of this?

Yes, while you are going through the process of diagnosis, and subsquent therapy appointments, and hear sometimes that your child is not going to have a very good prognosis - don't give up hope!!!

The other thing that the social worker shared with me *bless his heart* was that the parents who go on with their children, and survive through all the difficulties, and are the most successful - are the ones who are like a beacon to others, and share the stories of hope and triumph over difficulties. Every day we have a small victory, sure - we still have lots of difficulties, and sometimes there are some really tough days -

But never give up hope. Wherever your child sits on the spectrum, he or she can have a good life, a wonderful life, and bring yourself and others great joy. Learn to appreciate the wonderful qualities about yourself, and your child - focus on the gifts you both have, get help where you need it, and

*enjoy the journey*

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