Friday, March 26, 2010

Perfectly different - guest blog/rant by TantrumMaumma

As a first time parent you seem to rely on the books and the net and other people for advice on when your child should be meeting certain goals. We did this with families’ friends and the health nurse. Our son met some milestones before expected some on time and some a lot later than expected.
We had experienced some strange behaviour from our son, but all in all we were told he was developing fine and there was nothing to worry about.

In my heart I knew there was something different about him, he would headband when he was frustrated but I kept telling myself that it was normal, he would scream if any one he didn’t know touched him, he had what I know is sensory problems, he hated the vacuum, the aeroplanes, and the traffic, as he got a bit older there were a few more problems added to the list, one in particular my son doesn’t like crowds, he will close his eyes and rock, this happens on the bus if there are lots of people.

We have been through 2 paediatricians to try and work out why my son, barely talks, and why he has what I used to call strange habits, my son wouldn’t play with toys no matter how shiny, how much noise they made, or how much they lit up, he would just throw them. He would line up things we had in the house for example tuna cans, or play with door hinges. They were his toys.

It wasn’t until we became involved with Child protection, that any one listened to my concerns, apparently its not perfectly normal for your toddler to put their hand on the glass of a oven while its roasting hot and not notice there hand had been slightly burnt, or be in the shower and turn off the hot tap and not notice the water is stone cold and still be standing in there.
Child protection arranged for us to see the pead at the local hospital, who said she would do future assessment with my son, and referred him off to early Intervention. We are still on the waiting list a year on for services such as occupational therapy and speech therapy. That Pead shortly afterwards left the hospital and referred us off to a different pead who actually gave us answers and path ways to help.

The new pead told us our son has speech delay he has approx. 20 words not all clear enough to be understood and uses maybe 3words in a sentence but that is not very often it’s more like a once in a while thing. 
Our son also has Autistic traits and will be getting a full on assessment in August shortly after his 3rd birthday. We have been referred off to a specialist play group where we can meet with families going through the same thing and meet with some early intervention workers.

Some of the most hurtful things that have been said in recent times is that I caused my son’s disability. 
Why on earth would I do something like that for? 
I’ve been told that I have feed him to much gluten. 
That he is disabled because I fully vaccinated him – I know people have their thoughts on vaccination and that is okay I don’t push my beliefs on you and you shouldn’t do the same to me, the repost linking vaccinations to Autism was recently retracted. 
I’ve been told I wasn’t nice enough to my son while I was pregnant. 
I’ve been told god is punishing me for having a bastard child. 
I’ve been told that I can cure my son with magic pills and diets and stupidly expensive “doctors”. 
Autism was genetic there is no way you can catch it from my son, he is not a freak, nor should he be cured, He’s not naughty he is misunderstood and Autistic. 
(We call him Autistic because it’s easier than explaining that he has signs and hasn’t been diagnosed yet) 
No matter what you or anyone else thinks my son is an amazing person he is a bright kid and he is human. I love him just the way he is and he is perfect.
We found this website to be very useful
I also support this charity and hope when my son is old enough he can go on that this camp They also have a great section on forgiveness
They saying that has stuck with me from the start of all of this is “EVERYTHING WILL WORK OUT IN THE END, IF IT HASN’T ITS NOT THE END”
Thank you for reading,

With love TantrumMaumma


Anonymous said...

Keep up the good work

Anonymous said...

Sounds like you are doing a wonderful job with your son :) I am a family day carer that is caring for a little boys with some of the same traits as your son and they dnt need to be judged so harshly, some ppl have no idea :( they need a lil bit of support and extra understanding !! Keep up the good work :)