April is Autism Awareness Month, and today specifically is World Autism Day. As a mom to three boys with autism, and thinking about what to write about today, I struggled. What exactly do I hope to make you aware of? Is awareness enough? Some would rather call it “Autism Epidemic Action Month“, and I’d have to agree. Awareness isn’t, nor has it ever been, enough.
So what should you know, to help take action?
Is it just the autism statistics in general, and that likely someone you know has a child with autism, whether they realize it yet or not? In 2007 the CDC reported that 1 in every 150 kids is diagnosed with autism.
Is it to share what my life is like, with the supplements, the therapies, the tantrums, the lack of sleep, the stress, the missing connection with my kids, the fact that I don’t get to have conversations, cuddles or heart to heart moments with my boys very often, if at all? Just so you can be a bit more understanding when I don’t return that call or email right away?
Is it to tell you that the rate of divorce among the autism community is so high and astronomical (nearly 80%) that it’s not only heartbreaking, but shows that more than just the children themselves need help?
Is it to make sure you know that even in a great economy parents of autism are hurting, because of the huge cost (and often lack of insurance coverage) for any and all treatments, often reaching hundreds of thousands for just one child, never mind during these oh so trying financial times?
Is it to tell you that even when my kids are doing better, it doesn’t mean they’re healed (yet!), and forgetting that they still struggle feels to me like forgetting all that we’ve triumphed over?
Ultimately I know that our country can no longer hide from this issue, too many are struggling to brush aside this epidemic. As families we many times feel as though we suffer in silence (even though we won’t tell you that), because our children don’t typically have overtly physical handicaps. Most of the time they appear “normal”. But just getting through a day, much less a week, a month, a lifetime, is a constant battle.
But every day, as I live and breath and experience my children, I don’t see their struggles. I look into their eyes and see their souls, even if their souls can’t look back at me. I see them, the real child, the real person, that is locked inside a broken body. I know that if they could they would tell me to not give up, to keep trying, that they love me and that one day this journey will be behind us.
A distant memory of a time when we didn’t understand, but we just hoped. We just lived.
{ 23 comments… read them below or add one }
Great post, Ari. Thanks for giving us a little glimpse into your everyday life.
Hopefully more people won't just be "aware" but they will take action- especially since most people KNOW someone or they themselves have been affected by this. Great post.
Wonderful post indeed. Your boys are adorable and are so very lucky to have such amazing parents. You and your husband are aweseome autism crusaders and I just wanted to tell you how much I love you. You are wonderful darling, simply wonderful.
You are such a beautiful mom to your boys, Arianne. The lengths you go to on a daily basis amaze me (I read the post you linked with the email from your dad). I have long prayed for more understanding of autism and a cure that so many families desperately need. I'm thinking and praying of you and your boys today.
Thank you so much. I have real hope that my boys can be healed someday. I hold on to that!
Beautiful post. Hard for others to understand how autism affects every part of our lives. You sound like a wonderful mother…thanks for the peek into your life.
Great post–and thank you for helping me to understand a little bit more.
What a terrific post. Thank you for sharing a personal insight into your day to day life. I agree, awareness is not enough.
Beautiful post. I don't know how you do it all, but I admire all you do.
I am also a mother of a child with autism and I wholeheartedly believe that this epidemic is manmade–we have so poisoned our earth with pesticides that disrupt the nervous systems of insects and other animals, that the aggregate tonnage is finally having an effect on us, the humans who created this ecological disaster. The brain, after all, is part of the nervous system. All families touched by autism should march on companies that produced chemicals like furadan and demand these poisons be removed from the market and the factories that produce these nervous system disrupters be shut down.
Thanks for this glimpse into your daily struggle — and testament to your love for your children. If awareness isn't enough, what actions can concerned citizens take? I'd love to know if there's any legislation that would be helpful (ie supporting research).
Hi Jess, reading through some of those links in the post helps with education, as for legislation – this is a good place to start: http://www.safeminds.org/research/ and as far as raising funds – the National Autism Association's homepage has great resources up right now: http://www.nationalautismassociation.org/
Thanks :)
`Arianne
Stopping by with hugs and love. Excellent post. How about sharing it over at 5MFSN?
Pretty please?
You can post it if you like Tammy!
Beautiful.
Your strength and love completely amaze me.
Thank yo for sharing your heart!
Aw, thank you :) So appreciate the support!
You know I am right there in the trenches with you, girl. Truly. We are the ones who are aware. Hoping to make others not just aware, but understanding.
T.
As the grandfather of a grandson who we think is autistic (his mother and father don't like uttering the word), I really empathize with you having three children that suffer with it. Her other two boys have developed normally. (I had a hard time forming that sentence). She's bought one of Jenny McCartney's books, but she still is not comfortable openly discussing it even with us, his grandparents. I feel like we need to all discuss our responses when people ask about him, but she won't talk about it. He's getting close to three years old. Knowone has asked directly yet. They've asked: How come he's so quiet? How come he don't look at you? Etc. We just laugh it off and say that "he is in his own world." Anyway, just hang in there!
I'm sorry to hear that your grandson is struggling, and it sounds like if she bought one of Jenny's books she's hopefully on the path to discovering that it's better to acknowledge and seek help, then pretend it will all go away. The more you support and love them, the easier it will all get. You hang in there as well!
Thank you so much for this post. I spent many years working with children who had autism and really developed a heart for them and their families. I wish more people understood what families are going through and the lengths they will go through for some hope of normalcy. I am sure many of your days are beyond exhausting. Thanks for helping us to see a tiny window into that world.
thanks for the love :)
Thanks for this post! I have a son with Asperger's Syndrome. I hope for healing for him and for your boys too. God bless!
This post made me cry. We are trying to grapple with our child and are still waiting to be tested. What you describe in a day is what we deal with. How alone you feel is so overwhelming. I just feel like you peeked into our home the way you express everything. I pray that tomorrow will be better. It has to be!
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