10 things I Wished I Knew

I’m feeling inspired today after reading this wonderful article on Huffington Post Women.  I read a lot of blogs and articles and many that identify “Top 10” things to do, etc. I’m going to start a series of blogs that feature my “Top 10” ideas or thoughts about various topics.

First up.

10 things I wish I knew about autism before I figured them out the hard way:

• • The first time Rye does something is how he thinks it is going to be every time we do that activity again. I realized this while I was attending a workshop by Aaron Likens. Aaron has autism and he is an amazing speaker. He talked about how doing something a second time is really difficult for him at times if it is not EXACTLY like it was the first time including order of events, where he ate lunch, what he ate for lunch, etc. In retrospect I totally agree that this is true for Rye. I can think of numerous activities that we tried, things went great so we wanted to try them again. The second attempt ended in a meltdown and a need to leave early due to behavior.

• • Denial doesn’t teach anybody anything. If you are worried that it “could be” something, it probably is. Trust your gut. I knew early that Rye would be present one minute and then appear to be in his own world the next, I just didn’t know what it was that made him appear to “leave us” for periods of time. When he was a toddler and I would feel my “gut” kicking in, I would lean into him when he was sleeping and say. Stay with me don’t go away… stay with me, Mommy loves you. Trust your gut and your perceptions of your child’s behavior, they are probably right.

• • Rye does not know how others feel in most social situations. He does not employ theory of mind. I blogged about this several months ago. Sometimes I am easily angered by Rye’s lack of compassion toward others. I have to constantly remind myself that he struggles with understanding how other people feel because he really doesn’t know how to look at things from someone else’s perspective.

• • If he knows about it in advance, he can handle it. If he doesn’t it is really hard for him to handle a change that has not been predicted in advance for him.

• • Sensory sensitivities DO exist and they matter. I love this clip from the movie about Temple Grandin that was produced by HBO. Claire Danes who plays the fabulous Temple Grandin in the movie talks about how sensory sensitivities feel for her.

• • I do not have to be an expert about ANYTHING and the best thing I can do when I don’t know is to admit that I don’t and find somebody who does. Investigate all the services in your area. We really feel like it is helpful to hear the perspective and suggestions of as many professionals as possible. We receive services from multiple agencies, don’t feel like you have to choose one agency and receive all of your services from one place. Your only real obligation is to your child.

• • Thick skin is required. There is always going to be judgement. With advocacy comes skepticism, but education is the biggest component of change. There will always be people who interpret your mission differently than you do. Ignore this. It doesn’t matter. Let judgement be the concern of others, not your own.

• • Anxiety, Anxiety, Anxiety. Most of the time it is the freaking anxiety that gets him.

• • Baby steps matter too. Set realistic goals and the bigger ones will happen.

• • Find an outlet and a way to vent your frustrations, receive support and turn your journey into something positive for everybody. My outlet is writing on Autism Pirate, finding support from a fabulous Mom’s group called Mothers of Children with Autism, and giving back to the autism community by raising funds for Ella’s Hope for Autism.

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