What You See & Don’t Know

“Never mind my autism, what about your ignorance? Become educated before you become opinionated!”

This morning I read a tweet from Autism Speaks about an article “7 things you don’t know about a special needs parent”. Even if you don’t have a child with special needs, you may have a new understanding about those who do after reading the article. If you & I are friends or family, you may even have a new understanding of me.

What lies before us & before us is nothing compared to what lies within us.
-Ralph Emerson

We just came back from a week of vacation & while it was fun and amazing to see my family and friends who I have not seen in a year … it also comes with a lot of stress, even less sleep, more meltdowns & two very frustrated and stressed parents. One thing that was especially hard for Adam & I was the constant judging and snide comments about us as parents or our children .. but mostly Aiden.

You or the rest of the world may see a three year old boy who loves Lightning McQueen, dump trucks & hot wheels cars. A little boy who may cover his ears & scream “loud” as your kids are screaming & you are ignoring them to continue your conversation. Maybe he is not sitting still & being quiet because he is playing with his cars or playing peek-a-boo with his sisters. He may be talking louder then you would like, but know that we are working on that so please bare with us.

You may get annoyed because he has said “hi” to you four times while you are ringing up our groceries, but know that up until the last six months, he would not have looked at you. He never would have said “hi” or ever tried to engage in a conversation. In fact, remember that when he is “talking too much” too. To you he is talking too much, but to us he is using his words to communicate with us. Something he hasn’t been able to do until very recently. You may take for granted about your own child, because you may never know what it is like to not know if you will ever be able to have a back & forth conversation with your child. If you will ever hear their voice. If you will ever hear them say “I love you” to you.

While you may see a temper tantrum with parents who appear to be coddling him, we are in fact trying to calm him so that we can try to figure out what is wrong. I am sure you would rather have us try to calm him down then let him continue to scream, right? Otherwise then you would be judging us for being “those parents” who let their child continue to scream. Seems like we can’t win either way.

While I don’t go around telling every random stranger who gets annoyed with him or Adam & I all of this, maybe I should. The next time we are getting dirty looks, being judged as parents or the next time someone calls my child retarded.

More then anything I wish people would take a moment to learn about autism & try understand Aiden. Unfortunately not everyone does & who knows if they ever will. Instead they will make comments that aren’t funny, tell us how to parent & become even less a part of his life. That sucks. Sorry for the simple “it sucks” but honestly it does. I can’t & won’t look at him and say “I wish they accepted you, for who you are & not who they wish you were”. Although maybe then he would understand that it’s them that are the problem & not him.

I will admit it, like the mom in the article … I am very tired, stressed, I do feel alone, I am very scared & wish people would stop with the jokes, retard comments & wish that I could talk about Aiden but also sometimes not talk about it because sometimes I need a break.

Sometimes when you see me out, I may look like a I am two seconds away from loosing my mind. Truth be told nine times out of ten I am! Please don’t judge me. Just know that it has probably been a really trying day, but I am trying to make it thru with as much sanity as I can. I will try to remember that you don’t live this life everyday & may not have any clue what it’s like. So I will do my best to understand your uninformed comments & try to inform you.

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2 thoughts on “What You See & Don’t Know

  1. I read that post but didn’t really agree entirely; sure every parent on the spectrum feels tired, stressed and alone at times, but there are outlets for frustration, and social networking is a great way to connect with other parents; not to mention reading a few good blog posts!

    • I agree with you, I didn’t agree 100% with the article but I felt like it was a great start of an explanation to those who don’t have a clue what life is like for those taking care of someone on the spectrum (more specifically our everyday life). It has been our experience with particular people in our life that it is much easier to judge and offer “advice” then to listen & try to understand.

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