Sunday, November 23, 2008

I Never Know If I should Write These

I always feel a bit funny whenever I do a post about Asperger's Autism and Caleb, I don't know why, maybe it is that I don't want to feel like he is being labeled or if it is because I deal with it everyday so I don't need to share anything but the positive side of it here - Anyway I digress.

I was talking with a friend the other day who was saying that she thought one of her friends son's may be autistic, and even though his parents were in denial that she felt she shouldn't say anything. Caleb's Asperger's is fairly mild on the spectrum scale and I had to fight long and hard when it came to finding professionals that would listen that there was something in my little boy that wasn't coping. Even now I get people saying that "you wouldn't know", "am I sure", or my all time favourite verse "All boys do that". I have got to say though a lot of the symptoms of Asperger's are normal toddler behaviour, just in the extreme. At the primary school we are sending him too eventually they had 12 boys with Asperger's this year, a friend commented "That can't be right, they must just over diagnos it". I digress again.

The photo above is of Caleb's trains all lined up, a really common coping technique. We have a lot of repetitive play and not too much imaginative, compulsive moments. He also manages really well in social situations and then tantrums once we get home as he works so hard to keep it together for outside people. At his peak, we couldn't leave the house, new places were just too hard, and we have slowly built that up over time to where most of it can be enjoying, even if 2 hours is about his limit. I have got to tell you I too have some great stories from snide people as I tried to calm him down, but that is for another time.

I guess the point I am trying to make, even if it is long winded, is if you think that there is something with your child you are concerned about, to search until you are satisfied with the response (not in an over-the-top ER kind of way). Caleb was at his peak of behaviors at the beginning of the year, and now after lots of work he is doing great. There is light and relief if you know what you are dealing with and you can give your child the tools to cope. I also discovered the best solutions for our major problems, (getting in the car seat, toilet training, showering, etc) were the ones that I came up with. I know him best, it too a long time though for me to trust those instincts. Blah - I hope this made some kind of sense, I promise more sewing tomorrow.

19 comments:

Kerry said...

You shouldn't have to apologise for writing about something like this. It's your own blog, and sometimes it helps to get it out there. Plus, someone might read this and actually gain some valuable insight about asperger's. It's a very ambiguous disorder and not many people know much about it, so thanks for sharing. Your little boy is so cute by the way! :)

Hoppo Bumpo said...

You're doing a great job Cindy.

(PS. the scenes of tank engine line-ups look familiar to me!)

Sarah-Jo said...

I am a firm believer in mothers instincts, the medical profession really need to sit up and take notice when mothers voice their concerns

I know its not the same but I went thru the same kind of stuff when trying to get my sons allergies diagnosed

especially his rhinitis which would effect his behaviour and sleep and it was so maddening

A mother knows best

great post!

JustJess said...

Great post Cindy, I was nodding a lot as I was reading it. It's a curious condition, and we have had the snides from people too as we learn how best to deal with Master Six. You are doing a great job. x

Kat said...

You have every right to express these things on your own blog. I understand your pain with the doctors not beleiving you. I have a wide range of food allergies that when I eat them its like I have ADD. It took my mum so long to get someone to listen to her when I was younger and work out these allergies. But she knew something was wrong and she searched and searched till someone helped her find the truth. When it comes to your kids you should always follow your gut instinct. Mothers always know when something is not right.

potty mouth mama said...

Cindy, what a great post. You're a great mama and don't you forget it!

That line up looks familiar to me too!

As you said, you are the best one to diagnose your own child - you know him best.

Beth said...

I think it's great that you're blogging about it and I love hearing your stories. The more information from first hand experience, the better! There is so much misinformation about it (from both medical professionals and regular people!), so in my opinion, telling people what it's really like is the way to help bring those walls down. Your posts definitely help me to learn more about it.

Linda said...

this is a great post! My nephew has Asperger's and my sister went through an incredibly hard time to get a diagnosis. She ended up doing so much research herself at the same time trying everything possible like diet etc. My nephew is now 12 and even though my sister is now having therapy as it has really taken it's toll on her over the years, she is a lot better and so is my nephew. He is at the lower end of the scale too but nontheless as you would know it has been extremely hard on the whole family. They did the DAWE programme have you heard of that? It helped a lot

Poppy and Mei said...

Oh I loved reading this!
You're a great source of inspiration.
Thanks for reminding me to always trust my gut, it's so easy to forget when the outside world may not agree with your methods or beliefs...XXxx

Leni and Rose said...

This is your space, your place to write whatever you want to. So write away, my dear! And you're right on track - mothers instinct is always spot on...

mellimoomoo said...

Oh Cindy I think you are one amazing mama. "Mummy intution" is in my opinion, always spot on when we tune into it. Our babies are a part of us, so of course we know when something feels not right, or they are hurting. You are so wonderful to remind us all to listen to these instincts. Thank you.
xox megan

Amber said...

Oh you lovely mummy, you lovely thing.
Mother's instinct is clearly stronger than outsiders opinions.
You writing these words will convince me and so many other mummy's to trust themselves.
Stay real...i love it..xx

dearmolly said...

a wise woman said to me only last week, "be a lioness and protect your cubs". That's exactly what you have done - it's instinct, but sometimes we're made to feel like we're overprotective and paranoid. This is your family, this is your blog. Don't apologise, and thanks for sharing.

Lynda
xox

Sophie said...

I think that your experience with Caleb makes you who you are, and it is why people read your blog, you are honest and people can relate to your situation. Never apologise for just being yourself.

Tinniegirl said...

What a great post. It's really interesting to read about your experience and also to be reminded that often people close to children do know best. Thanks for being so candid and sharing real life with us.

Lauren said...

I love this post

Sarah said...

Hi CIndy,

Just discovered your blog because of the Eye Spy and then read further. What a relief to find a blogger who has a son with AS. I have an Aspy as well. He has just turned 10. A struggle till finally the school acknowlaged his behaviour and in grade one (experienced teacher of AS) began our journey with a name. He has just turned 10 and for me it has been a big sence of guilt. Did I do good enough. Did I understand him as best as I could. Have I done the right thing by him. I am sure you understand these feeling when many other people do what you posted about.

Thank you very much for sharing it - I have held back posting about my Aspy because I just did not want to hear what the general jo blow says anymore.

Christie said...

So nice that you wrote this, if only to make people more aware of asperger's.

Alos good to encourage people to trust their own instincts, as you say, you know your child best.

Glad to hear that thinga rea getting easier x

Anna Lloyd said...

It sounds like you are a great Mum! I think trusting your intincts is always right as a mother. You know your son better than anyone. Don't let anyone make you feel otherwise.