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Thursday, April 15, 2010

Unsolicited Parenting Advice

You'd think I'd be used to this by now. Almost every parent who has a child with autism, Asperger's Syndrome, or any number of autism-spectrum disorders deals with this regularly. Some people have this compulsion to give unsolicited parenting advice - and quite frankly, it pisses me off.

Here's what happened today. Someone freaked out because Sam had two doughnuts. I didn't care that he had two doughnuts. He's on a medication that doesn't allow his body to feel "full". Weight gain is a common side effect for Risperdal - Sam has gained 20 pounds since he started taking it in September. I know Sam is overweight. But... it's not like he eats two doughnuts every day. 

This man - who, by the way, doesn't even have children, much less a special needs child - told me that I needed to "curb" this behavior and not let him eat so much or he would grow up to be obese. He was really freaking out that Sam had two doughnuts! It's a really good thing there were other kids around, otherwise I would have told him exactly where he could stick that bit of parenting "advice".

How do you handle the unsolicited parenting advice? Today was a bit extreme - for the most part, the unsolicited parenting advice I've gotten was definitely more gentle. I usually smile and nod and tell them we've tried that already, because chances are we have. We've tried everything!

I ended up just ignoring this man, but if he ever opens his mouth again to tell me how to raise my son, I will say something. Rawr!

Tuesday, April 13, 2010

What a difference a year makes

Today is Sam's 8th birthday, and I'm embarrassed to say, I've been on the verge of tears all morning. I'm just so proud of him and everything he has accomplished.

It was one year ago this month that we got Sam's diagnosis of Asperger's Syndrome. What a day that was. I had been fighting for almost a year prior to his diagnosis, trying to get information on doctors, trying to get school professionals to give me some direction, trying to convince Sam's father that there was something going on with his son and that it wasn't ADHD (like another doctor had said). 

It was so clear to me that Sam had Asperger's Syndrome. But when I talked to his teachers, his occupational therapist, his behavior specialist, the special education department, his preschool administrator, family members, social services... everyone had a different opinion. It was so incredibly frustrating, trying to figure out what to do and where to go.

Finally, something happened that spurred everyone into action: Sam threatened Kaydee with a knife. Horrible, right? But really, if it hadn't happened, we may still be spinning our wheels. 

Sam didn't really threaten his sister with a knife. I'd mistakenly left a knife out on my desk after opening a package from his father for Sam's birthday, and Kaydee picked it up while I was in the shower the next morning. Sam took it away from her and was trying to explain that it was dangerous. She wasn't listening, so he mimicked "stabbing" motions to show her how dangerous knives are, and Kaydee ran to me crying that Sam had tried to poke her with a knife. Because I hadn't seen what happened, and Sam wasn't telling me anything, I had to go with what Kaydee said happened. 

I called the special education department, spoke with my parent liaison, and she got me an appointment to see a doctor in Bismarck the next day. Finally I had the name of a doctor who specialized in Autism.

When we met with the doctor, I was terrified. I thought Sam was going to be locked up or admitted to a psychiatric facility or taken away from me, because of the knife incident. Instead, I finally got answers. I was finally told, in no uncertain terms, that Sam was autistic.

While some parents may feel disappointed or upset with a diagnosis of Asperger's Syndrome, I was relieved. No, I was more than relieved. I felt vindicated. Ever since Sam was a baby, I'd thought I was a horrible mother. I thought I had done something terribly wrong. Why couldn't I get through to this kid? Why wasn't he listening to me? Why was he acting out all the time and fighting me over stupid things like socks? Why was he so much trouble? 

People whispered about me. No one ever said it to my face, but I'd heard enough to know that the general population thought I was a horrible mother too. Hell, even my ex-husband had his doubts in my capabilities as a mother. 

But no longer. Now I have a name for what ails my son: Asperger's Syndrome. Now I know what I'm dealing with and how I can help Sam with his disability. I dove into research. I ordered every single book I could find about Asperger's Syndrome. I watched him and learned about him and put all my knowledge to good use. I fought for his rights at his IEP meetings. I explained his behaviors. I implemented new tools at home and introduced those tools to his IEP team to help Sam cope. 

And while I've been talking this whole post about how his diagnosis has benefited me, it's really benefited Sam the most. Last year at this time, he had severe sensory issues. He had to wear his socks inside out because the sock "pimples" bothered his toes. I couldn't get him to wear shoes (he wore snow boots). He couldn't stand bright lights, and he cried when his photo was taken with a flash. We couldn't go to a basketball game because of all the noise and chaos. He would cover his ears and yell for everyone to shut up in the lunchroom. 

Today, he has none of those issues. He can wear socks and shoes without problems. He can wear t-shirts with a silkscreen on them. While bright lights still make his eyes water, he doesn't throw the fits he used to. Last month, we went to a basketball game, and Sam just remembered to watch the time clock so he could cover his ears when the buzzer rang. He's learned to manage his sensory problems.

It's not only his sensory deficiencies either. Things are so much more calm at home. I don't fight him when he fills his pockets with rocks - I let him have a rock collection. I don't fight him anymore at the dinner table - if he doesn't like what I make, he knows he can make himself a sandwich. We use the Incredible Five-Point Scale to help him identify where he is emotionally (and it works for me too!). There are so many other accommodations and changes we've made at home, but by now they've become second nature to us, so I can't even identify them all!

I'm just so proud of my boy for all he's accomplished this past year, and I'm proud of myself. I'm proud of Kaydee, who at five doesn't really understand it all, but she sticks up for her brother at school. She's had to endure a lot this past year too, but it hasn't broken her playful spirit. 

Yay for us! 

Happy birthday, Sam! May you experience even more growth in this upcoming year.

Additional reading:

Since Asperger's Syndrome is considered a social disability, it is easy to recognize in school-age children. However, there are some early warning signs to Asperger's Syndrome that can began in infancy.
by Heather K. Adams

Saturday, April 10, 2010

Public speaking about Asperger's Syndrome

Today I gave my first ever public presentation about Asperger's Syndrome for our local Sons of Norway group. I had a small audience (eight), but it helped me reach my Autism Awareness month's goal to teach three local people about Asperger's Syndrome and autism. 

While I can talk for two weeks straight about Asperger's Syndrome just off the top of my head, I was really quite nervous. I'm just okay at public speaking. I tend to stutter and say "uhm" a lot. But I shouldn't have been nervous. They made me feel at ease as I stood in front of the room with Sam at my side.

I introduced myself and my children, and then started talking about Sam. I talked about how he got diagnosed and the relief I felt when he was diagnosed. I gave a definition of Asperger's Syndrome, compared it to autism (which people tend to be at least a little familiar with), and then launched into an explanation of the various traits and how they affect Sam: language/body language/humor difficulties, the lack of empathy, the sensory deficiencies, meltdowns, etc. I also touched on the good aspects of Asperger's Syndrome: the excellent memory, the high intelligence, the wild imagination.

I spoke about how my parenting techniques have changed after his diagnosis, and I also shared that while people who don't know about Sam's disorder think I'm a bad mother, I know in my heart that I'm not. I'm the best mother I can possibly be for Sam and Kaydee.

I got a lot of compliments afterward, and the audience asked a lot of great questions. They were very interested in the topic and thanked me profusely for coming and speaking for them. Most of them had never even heard of Asperger's Syndrome.

I just feel really good about myself today. 

Thursday, April 8, 2010

April is Autism Awareness Month

Last month, at one of Sam's PeeWee wrestling tournaments, his friend's mother overheard me talking about Sam's autism and how hard it was for him to learn the wrestling "moves" in that loud, chaotic environment. She pulled me aside and said, "I didn't know Sam had autism. When did you find that out?" She was surprised to learn that Sam's diagnosis was a year ago.

Since April is Autism Awareness Month, I decided to really look at how I am raising autism and Asperger's Syndrome awareness in my own community. My goal was to teach three people about autism-spectrum disorders and the effect Sam's Asperger's has had on all our lives.

I post all my articles I've written about Asperger's Syndrome on Facebook, and I have had several people (although not local people) thank me for linking my articles. My friend from college said she's learned a lot about Asperger's Syndrome from me ~ and she's a school teacher!

When someone local asks me about Sam, I explain that he has an autism-spectrum disorder called Asperger's Syndrome. Mostly they just smile and nod, and I try to explain things to them, but I haven't been able to come up with a good, yet brief, explanation.

And honestly, not too many people ask me about Sam. They just assume he's a naughty kid.

So how do I raise awareness in my local community? I write for my local newspaper, and I have pitched an idea to my manager for us to interview local families who have children with autism (including mine). So, there's one idea.

There are also a lot of Autism Awareness products - jewelry, t-shirts, buttons, car magnets. I bought a couple t-shirts from Cafe Press, and some pins from another company to wear, to let people know how proud I am of my son with Asperger's Syndrome. 

I am also giving a presentation this Saturday about Asperger's Syndrome for our local Sons of Norway group. I'm so excited! The woman asked me if I could give a 15-minute presentation on such short notice. I laughed and said, "I could talk for two weeks about Asperger's Syndrome right off the top of my head!"

I think I have accomplished my goal, or I will have by the end of the month. What are you doing for Autism Awareness Month? Let me know!

"The puzzle pattern of this ribbon reflects the mystery and complexity of Autism. The different colors and shapes represent the diversity of people and families living with this disorder. The brightness of the ribbon signals hope - hope through research and increasing awareness in people like you."