Thursday, July 23, 2009

What does she mean by "rainmom"?

Rainman....rainmom.....get it? I've got a son on the autism spectrum. The part in the middle. Pervasive development disorder. It's characterized by the social delays associated with Asberger's Syndrome. It also includes verbal delays. It does not include some of the characteristics of full-blown autism, such as the inability to speak, refusal to show affection, etc.

I'm actually walking into a minefield by offering such brief characterizations. No two autistic children are the same. Some show all the classic signs while others do not. Let me tell you about Martin's fourth birthday so you can get a sense of what our life is like.

On May 14, 2008, Martin turned four. I gave birth to our second child, Sasha, just five days earlier. We wanted something low-key, because I had just given birth, but also because Martin didn't know what a birthday was. So we had some strawberry pie after supper. We sang "Happy Birthday." And we tried to show Martin how to blow out candles. We helped him blow them out.

After supper, Martin picked up some of the Bob Books we had gotten him recently. For the uninitiated, Bob Books are for early readers. Mostly three-letter words. We had never read them to Martin. He picked up the first one and read it to us. He was wearing a diaper at the time. It's a strange thing to have your child read their first book when they still can't use a toilet.

I'm blogging because having a special needs child can be lonely. People don't want to pry. They focus on the positives. In this way, people are nice. But life with Martin includes very difficult moments. And I'm a little tired of keeping them within the family. So, here's my blog. And I'm gonna do my best to write every day.

7 comments:

  1. Oh Jen!! I just want to hug you! My youngest son who is 9 has auditory processing disorder. No one in all the years of doctors and tests and therapy have ever labeled him as autistic but it's there. I know what you mean by feeling lonely. I'm scared and lonely all at once. We're starting to homeschool him in the fall because he does his best learning one on one though he is going to miss the social aspect a lot because he's a very social kid. If you ever need to vent. I'm here for you!

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  2. thanks for sharing the beginnings of your very interesting story. Martin sounds like a pretty cool kid. I agree with you on pushing those social norms. My son Lukas doesn't mind walking around in my high heels or giving hugs to other boys instead of hitting them. He still loves his dump trucks, but any "red blooded American" might raise an eyebrow. I simply smile. He's happy and well adjusted. Who am I to redirect his imagination just so he can fit nice and neat in a pretty little, pre-destined, gender specific box so society can feel better about themselves? not gonna happen! and for the record, I always thought your group of building scaling board game playing friends WERE the popular kids. lol

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  3. The picture of Martin reading you a Bob book in his diaper says so much about what life is like for your family these days. It's not an image I'm likely to forget--thanks for sharing it and starting your blog. I'd read the phone book if you wrote it, Jen, so keep it coming. I didn't realize how much I'd missed hearing your voice!

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  4. Hi Jen,

    Your sister in law Jeanine directed me to this blog, thank you for sharing your story. I know in many ways it might be a thought process for you, but I have a feeling it's also going to encourage other moms in similar situations.

    Our daughter was more special needs for a season but we have many friends with autism or asbergers. What you wrote is definitely a common theme. It's constant advocacy and very lonely at times.

    Martin has a great family, I look forward to reading more.

    Blessings,
    Julie (Tong) Arduini
    (I went to school with Jeanine and remember Stacy)

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  5. Blogging wasn't around yet when my two spectrum sons were Martin's age. I'm glad you have this outlet. It definitely can be a lonely journey. Friends on the internet helped me get through some of the toughest times. Still do, many years later. I'm glad I found your blog!

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  6. Hi Jen, my son Joey just turned 5 and was diagnosed with high functioning autism. He was a few months past 3 when he picked up a Dr. Seuss book and read it to us. Like your son, he was reading while still in diapers. In fact he is still in diapers. sigh

    Carol

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  7. hi jen, my names phil and i live in australia, my son is 12 and has aspergers, cant tie his shoes , or use buttons, has dreadful temper outbursts,,i know its just the frustration he feels, but he is so bright and clever, but school is hell for him, he just cant manage with the other kids,its been hard at times but i can see light at the end of the tunel,slowly but surely were getting better every day,,not that i think he's ill,he's just different to others,loving, caring and ohhh so very funny, i wouldn't change him for the world,,,,just some of the things he say's and does,,ha ha all the best to you both,,,Phil :)

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