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Guest Post: You Never Know What Their Quirks Will Become

April 25, 2013 By

Today’s post started life as an email that my friend Jacquie sent to the autism parenting group that we both belong to.

Jacquie is the mom of two boys, aged 8 and 16, who both have special needs.

Her older son, Eric, has autism. He has his challenges, but as you will see in this post, he is finding his way in the world. I will not say any more – I will let you read for yourself.

8-year-old Justin has RAD (reactive attachment disorder), autism and intellectual delay. He is one of those unreasonably good-looking kids who you just know will be making girls swoon as soon as he (and the girls) hit puberty.

And Jacquie? Well, she’s just a fabulous friend and a fantastic mom. I am immensely grateful to her for allowing me to share this story of Eric. To special needs parents like myself, this is really a story of hope.

Without further ado… over to Jacquie.

Eric

Eric

 

When Eric was a baby, the only way you could soothe him was singing.

When Eric was a toddler, he used to stand in the windowsill of his bedroom’s gigantic window and listen to a cassette of kid’s songs sung by kids over and over.  When the tape ended, he would scream until someone came and turned it over and pressed ‘play’ again.  Then he’d scream until we got the hell out of the room.

When Eric was a preschooler, he’d sit in front of Windows Media Player and watch the visualizations you could choose to go along with the music that was playing.  He’s spend hours just watching these graphics move and change with the music.  God forbid you try to distract him.

When Eric was in kindergarten, he developed a musical crush on Shania Twain.  I still shudder to think of that year.

When Eric was in grade school, he started to make music using free music programs like garage band.  It was awful.  I didn’t have the heart to tell him he sucked.

When Eric got to high school, he asked for a professional-grade music-editing software suite, so we gave him that for Christmas. Subsequently we began seeing him only for meals and The Big Bang Theory.

When Eric had a little experience with production, he asked for a Mac, which has superior music production capabilities.  He was taking guitar lessons, piano lessons, and music classes at school, so we thought it was probably worth it.  Subsequently we began seeing him only for meals.  There are days’ worth of The Big Bang Theory episodes on the PVR that have never been watched.

When Eric was a week younger than he is right now, a Danish music promoter contacted him and, based on the free content Eric has put out on music sites and on the the contests he has won with his compositions, offered him a 6 month contract.

When Eric was 12 hours younger than he is right now, we signed.  Eric is now represented by a dance music label in Denmark.

His songs will go up for sale on iTunes, Spotify, Juno, and Amazon.  This company will help him design his logo, refine his sound, and establish a presence in the market.

When Eric was a little boy, we mourned the way music took him away from the world.  Now he’s bringing his music to the world.

(Photo used with permission of Jacquie VonHunnius).

Filed Under: autism, Guest Posts, Health Activist Writers Month Challenge, Hope, Jacquie VonHunnius, Music Tagged With: , , , , , , , , , ,
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5 Things This Autism Parent Wants You To Know

April 2, 2013 By

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1. When we tell you that our child has autism, don’t say you’re sorry. We know you mean well, but why should you be sorry? We’re not. Autism parenting can be as tough as hell, but we adore our kids, and like any parent, we do everything we can for them.

2. Autism is a neuro-processing disability. It is not an intellectual disability, although the symptoms may or may not include cognitive impairments. Don’t assume that a child with autism struggles intellectually, but at the same time, don’t assume that everyone with autism is like Rain Man.

3. If my child is in the room, any questions you have about him should be addressed to him, not to me. Don’t ask me how old he is or what grade he is in at school. Ask him. Afford him the same respect you would give to any child. He may not be able to answer all of your questions, but he has to have the opportunity to try. If he needs prompting, I will help him. But always operate under the assumption that he can, not that he can’t.

4. I don’t expect society to bend over backwards for my child. He is a child with autism living in a neurotypical world, and we are doing our best to give him the skills he will need in order to survive. He is always going to be different, though. He will never fit any mould of what people may think someone “should” be like. What I ask is that you embrace and accept those differences.

5. It is a very sad fact that the autism community is fragmented by different beliefs, and sometimes those fragments attack each other. Moms who choose to vaccinate their kids are accused of being bad parents. People actively campaign against autism organizations that do not promote a certain agenda. Insulting terms like “sheeple” are flung around. All of this really bothers me, because we should have a common goal – that goal being a better life for our kids. That should be what we are aiming for, over and above everything else.

Filed Under: autism, Health Activist Writers Month Challenge Tagged With: , , , , , , , , ,
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Autism Diagnosis: Blessing, Curse, or Both?

January 12, 2012 By

Receiving my older son’s autism diagnosis four and a half years ago was both a blessing and a curse. On the one hand, this diagnosis meant that there was something wrong with my son. I had known this for a long time, of course, but having it told to me officially meant that I could no longer hide behind the cloak of denial. I had to face the fact that my child had a developmental disability that would, in all likelihood, affect him for the rest of his life.

On the other hand, though, having the diagnosis meant that we could now get our son the help that he needed. Instead of having a vague sense that there was “something wrong”, we had a name for his condition. We had something to Google, we learned what services to seek, and we entered the labyrinthine world of special needs funding. Although we were devastated, having the diagnosis did make us feel a little more empowered.

About two years later, I stumbled upon an Internet support group for parents of children with autism. This group was not designed to diagnose, or debate, or judge. It’s primary purpose was – indeed, is – to give parents a safe place to talk about the daily challenges of autism, to vent about whatever was bugging them, and to freely utter the phrase, “Autism is bullshit” without having someone jump down their throat.

This group has turned out to be an invaluable resource for me. I have made friends there. I have been able to give and receive advice. I have come to appreciate that in the autism world, there are children both better off and worse off than my son. I have been allowed to express hope and despair, I have been able to laugh and cry.

And I have been able to learn. Through the experiences of other people, I have been able to develop some strategies to help myself, my son and my family. I have come to have a better understanding of what role my younger (neurotypical) son can play in his brother’s life. I have realized that even the strongest of marriages can be strained by the presence of special needs, and I have learned some ways to deal with that. I have learned about how different things are in the United States vs. Canada where autism services are concerned.

I have learned about the difficulties some parents experience, first when it comes to getting a diagnosis for their children, and secondly, when it comes to getting and retaining services. And just this week, I have learned that all of this may be about to change under the new DSM-V diagnostic criteria. Whether it changes for the better or for the worse is an opinion still up for grabs.

Tomorrow: how will the autism diagnosis change, and what does it mean?

Filed Under: autism, Autism Diagnosis, Autism Friendships, Autism Services, Developmental Delay, Doctor, Learning Disability, Special Needs, Support Groups Tagged With: , , , , , ,