Erin is a new blogging friend of mine and I’m sure she’ll quickly be one of yours, too! Erin is a mom to identical twin sons both diagnosed with Autism Spectrum Disorder at the age of 2. She writes about her life with 3 boys under 3 at The Slacker Mom.
Did you know? According to AutismSpeaks.org, boys are 4 times as likely to develop autism than girls.
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First impressions can be misleading. We all know about not judging a book by it’s cover. Even the beautiful books.
My boys look just like any other 2-year-olds out there.
They have thick brown hair and long dark lashes. Mischievous grins dance across their lips when they are up to something and pouty mugs cross their faces when they aren’t happy. They run and jump and play and laugh. They love ice cream cones and granola bars and apple juice. They hate naps with a red-hot passion and they are extremely annoyed by their little brother.
At first glance, they could be any 2 year old.
Until you bend down to talk to them and they refuse to make eye contact and you are met with a few garbled sounds, maybe a demand for a favorite treat or most likely, no words at all.
Until you try to play *with* them and they are off in their own world and can’t be engaged without some really physical sensory tactics- like bumping into the walls or laying in a big pile of dried beans.
Until you see them throwing a tantrum of epic proportions- hitting and screaming and biting on their own hands and throwing themselves on the ground for no apparent reason, with no clear outline of what to do to stop it.
With autism, things *seem* normal on the surface. But, engagement is difficult and sometimes rare. Often there are no words, so communication is full of frustration on both ends. Tempers run hot and fuses are short. Sensory overload is unpredictable.
Our home is sparse. The furniture (that hasn’t been destroyed by boys who like to tip things over) has slowly migrated to rooms they have no access to. There is nothing breakable within their reach. An autism-proofed house has a prison-like quality. Safety first.
Autism can be a nightmare for parents. Dreams seem to be snuffed out in a single diagnosis. It takes time to see that it is not, in fact, the end of the world. Days get filled up with various therapies depending on what plan of action you decide sounds the best for your specific child (because there is no single right way to treat it and there is *no* cure).
You cut yourself off from friends with neurotypical kids, because the pain of seeing those kids next to your kids is just too much to bare. There is really nothing related to their development that doesn’t eventually come around to them having autism. Casual conversations with other moms always leave me feeling like the bad news police.
There she goes, talking about autism…AGAIN!
I can just be quiet and not participate, but I want to talk about my kids. I like to talk about my kids! You just can’t separate it from everything and put it in a neat little box. I don’t have neurotypical kids, I have kids with autism. I can’t pretend these are not issues I deal with just so everyone is comfortable.
But, at first glance, they seem just like every other kid.
I like that they are not immediately pegged as being disabled. It’s like a bit of a head start before everyone catches up and realizes that something is different. If they are really lucky, people will overlook it altogether and just think these are two really quirky kids.
Talking about Awareness: By talking about her boys, Erin is inevitably an advocate for autism. What are you an advocate for? Or, what charity/organization is near-and-dear to you?
And yet people need to hear your experience. I’m *such* a believer in tearing down the walls. Your experience of parenting is just as valid as your friends’, and you can enrich each other.
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I do think they need to hear it, It makes most of them very uncomfortable though. I kill a lot of threads in the parenting boards i am a part of! I figure 1 in 70 in Minnesota will be diagnosed, 1 in 110 nationally…they are going to meet other kids/ moms/ dads dealing with this. It might be them! I think because it is so broad, so misunderstood and kinda scary, it’s much easier to pretend I’m not there.
great post! going to check her out….
and I’m always about spreading Down Syndrome Awareness!
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Thanks for reading my post! I’m very excited that Jenn offered this forum for me to write.
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Thank you Erin for Sharing your feelings. I have a lot of feelings like yours as well. Everyone tends to stay away from the mom because the kid is different. You don’t know how to talk to them because when they are saying all the stuff their kids are doing you get that feeling like you have failed, yet you know it’s in the diagnosis. Keep up on what you are doing!!!!
It’s the worst feeling. Some days I want to scream: They aren’t contagious! You know
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Now I feel guilty. While I do have a special needs child (cerebral palsy), I always felt that kids with autism get more attention to discovery a cure or treatment. When you wrote, “There she goes, talking about autism…AGAIN”, it made me feel kinda bad.
My niece has autism and she’s a rough one. She’ll be ready to fight a boy in a heartbeat.
Thanks for sharing. By the way, I found this blog on I’m Still Standing by Shelley
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Don’t feel guilty! I don’t know the numbers on what the research dollars are for CP but Autism is miniscule considering the number of kids diagnosed. A lot of kids don’t even get evaluated until they are in school because so many of the signs are things that are easily dismissed. It’s tough. Then again, any disability is tough. I blogged about this video a dad made a few months ago- it sums things up perfectly. http://www.theslackermom.com/2011/08/19/1-in-110/
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Thanks. I’m going to check out the video
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Sometimes I think it would be easier if autistic kids looked different. I don’t know how many “you are an awful mom” looks I’ve gotten when he wouldn’t engage with relatives we saw a few times a year, when he threw tantrums in public or refused to separate from me without tears. Now that he is 19 his odd behavior makes people ignore or move away from him–which doesn’t bother him, but yea, it bothers me, but I have to admit, that if he was not mine….
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