Monday, August 6, 2012

10 Things People Tell Autism Parents

Being a parent of a kid with Autism is a unique experience. You feel often times like you are in the same world as everyone, yet also entirely in another. Often times from the outside, things can appear normal and fine, but upon closer look you realize the inner workings are entirely different.

Here are some of the things people say to me, as a mom of a kid with Autism. On the surface, these statements seem true to them...but it's only upon closer look, that you realize the true depth to Autism and the impact it has on my every day, plan, future, and heart.

10 Things People Tell Autism Parents
1) It's okay now that your kid has Autism, because you are used to it.
  • How I really feel: I look fine. I smile. I am happy. Truly, I am. But, I am never quite used to the fact that my kid has Autism. This is something that never goes away. Not in a month, a year, or a decade. It is always there and always challenging in different ways at every stage in Colton's life. It hits me in different ways every day and still hurts to realize...he is different...he might not ever get married, or have a group of real friends, he might get bullied. I'll never fully get used to it.
2) Are you sure he has Autism? He seems fine to me.
  • How I really feel: I know you are trying to make me feel better, by telling me is doing well...and I'm glad you are looking on the positive...but please try not to negate what I am going through. He is not fine, and I have about 20 professionals and test results to remind me. My life is dedicated to helping him, and he is where he is because of 35 hours a week of therapy and nonstop effort. 
3) He can talk though (or eye contact, or insert whatever), so he must not be THAT Autistic.
  • How I really feel: I am grateful EVERY time Colton says anything, that he started talking again (after not speaking for a few months). I'm glad you think he is talking well, but again, anything to minimize what I am going through makes me feel a little dumb...and like you think I'm being over dramatic. Being able to talk some, or have some eye contact doesn't mean he is fine. Talking doesn't mean he knows how to communicate well or hold a conversation or make a real friend. 
4) If your next kid has Autism, you'll be okay though because you already know how to handle it.
  • How I really feel: Having another kid with Autism, I've heard is equally if not more devastating than the first kid's diagnosis. I KNOW how hard it is and how much work it is, and now I might have to go through it again with an entirely different kid. It'd be like saying "oh you had one child, you know how to parent the next." They are all so different. I still hold on to the hope of a normal family, having another kid with Autism shuts that little hope I have left.  I mostly just want you to validate my fear, and tell me that it would be hard...not try and comfort. 
5) I'm sure your next kid won't have Autism. The chances probably aren't high.
  • How I really feel: Do you know how many people willingly get pregnant after having a child diagnosed with Autism? Not many. The statistics are tough to swallow. If we have another boy, our chances of our next kid having Autism are around 20%. I have known families with 4 kids all with Autism...I see it all the time. 
6) I heard this diet can cure Autism.
  • How I really feel: I like the help and resources people give me, they have been very helpful. It's true that diets can help a lot of kids on the spectrum...but...there is no cure for Autism. No quick fix. I wish all it took was a diet. That is just false hope however. (personally, we don't do any diets)
7) You just need to discipline him more...or try it like this.
  • How I really feel: I doubt my abilities a lot on our really rough days. I am aware he is throwing a tantrum, or kicking sand, or not listening, or hopping too much...very aware... I have an entire team of professionals including myself doing everything in our power to help shape Colton and his behavior into the person I know he can be. Colton's mind works differently, and unfortunately, what works for most kids doesn't work the same way for Colton. If it did, he wouldn't have Autism and we wouldn't need therapy. 
8) What super abilities does Colton have?
  • How I really feel: Only a small percentage of kids with Autism have those super super genius abilities. Colton doesn't have anything yet that stands out as to where he will excel or what he will be really interested in. All I can hope for is to find something he IS good at, give him confidence, and hope he can turn it into something he can be successful in. 
9) Can't you test for Autism when you are pregnant?
  • (I got this one last week) You cannot test for Autism when you are pregnant. Autism isn't diagnosed through a blood sample or brain scan, it is diagnosed through observation. They know Autism is mostly genetic, but they don't yet really know what that means. 
10) How can I help?
  • Justify my feelings. Acknowledge the difficulty, and rejoice with me in the successes. Notice Colton. Don't talk about him like he's a science experiment. Talk to him, get down on his level and try to get to know him. Tell me he is handsome. Don't question the decisions I make for him, just support me. Allow me to vent and be angry, some days I need that. Allow me to be positive and optimistic, I have high hopes for Colton. Basically just love us :) 

10 comments:

Jill said...

Yes. Thank you. And, for the record, I have 100% confidence in your parenting decisions, and I thank God every day for our dear little boy, his amazing parents, and his outstanding support team. You sometimes appear super human, but I know you are flesh and blood just like any mom. Your concerns for Colton's future are mine as well. As his Grandma, I feel a deep familiar chord with every word you say.

I am said...

So you and I are going to write a book. Someday, when we have time to breathe, think and sit for a spell. Probably a series of books. The first volume being "what not to say" and hopefully with all the stupid things I am told I can keep it to just one volume. My latest sting -- someone throwing the "r" word around as they taught their RS lesson. Church should be our safest place, yet it is where we sometimes are most vulnerable. Hugs to you and the tongue-biting you have to do all too often! You are beautifully awesome even though you feel like a exhausted, worn-out mom.

Brooke said...

Great post. I have heard all these comments before and it is very insightful to see your thoughts behind them. It is hard, because people usually mean the best. But a lot of times saying the wrong thing is worse than not saying anything at all. You know I admire you so much. You are an amazing mom! I love you.

Emily S. said...

I found your blog from blog hopping from an old friend from BYU a while back, and have really enjoyed reading your blog! My 3 y/o son has autism too... you wrote this post so well! I couldn't have done it any better myself. Thanks for being so sharing about Colton. I'm not quite there, but hope to be at some point.

Cami and Juan said...

Thank you for this post. It is very informative.

Greg and Karianne said...

Love this Angela and I love you and Colton! I really admire you and all you do for your family and you can still make time to be a great friend and visiting teacher :)

Lisa said...

Great article! Forwarding links to some friends.
Who knew that being a parent could be so fraught with agony? In all my daydreams while pregnant with my first, I never imagined the torture of waiting for her to speak.

sam and brittney said...

Thanks for sharing your feelings. I love your blog. You inspire me to want to be a better mom.

Julia Bouley said...

Love! Beautifully put. I personally love it when parents say " bite me" to some of those statements. :)

Ashley J @ MommyByDayCrafterByNight said...

Love ya girl!! And love love love Colton! First dibs on a pre arranged marriage! :) I am sure Blakers will agree with me on that on! ;)