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7 Lessons I've Learned From a Year With Autism

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We’re quickly approaching the one-year anniversary of my son’s autism diagnosis. This has been a busy year filled with change and learning. I think that out of our little family, I may have been the one who changed and learned the most. Some of these lesson have been painful. I want to share some of  it with you. Hopefully you can learn from my mistakes. Or at least find comfort knowing that you aren’t alone. Because you need to…

1. Be kind to yourself
Yes, I did think at a year old that my son might be autistic. Instead, he was almost 6 when he was diagnosed, making him ineligible for all of the early childhood interventions. I have felt way too much guilt over it. I have had to let it go. The only thing the guilt was doing was sapping my much-needed energy from the here and now. I did the best I could with what I knew. That, my friends, is the only thing that we can do.

This leads us to…

2. Listen to your gut
I can’t stress this enough. I’ve learned this the hard way. If you feel these’s something up with your child, then push for an evaluation. The worst case is that you can be wrong. Best case is that you are saving everyone from unnecessary misery. You bypass number one. It’s a win/win. There will be times that you will be the unpopular voice. Everyone may doubt you. We as the parent some times pick up on stuff that no one else may see. The last piece that led me to seek an evaluation for my son was another blogger’s journey. I found my self saying far too often, “Wow her daughter is just like my son, and she is autistic.”

 3. You are your child’s best advocate
If you see your child struggling, speak up. If you see a big change in behavior, find out why. Don’t be afraid to ask questions. They need you to. Many of our children have a hard time communicating with words. You have to become a professional at understanding their form of communication. Verbal and nonverbal. I always think of Grover from Sesame Street: ” I will unleash my powers of observation!” Be quiet and watch. They will tell you what is wrong even if it isn’t with words.


4.You are not alone
One wonderful thing about the internet is that you’re able to connect to a whole world of people who have been there, done that. No judgment, no questions, just love and acceptance. If you look and are patient, you will find your tribe. I had spent six years of not knowing why. I was doing everything right. Why was my son so different? Why was our family so different? It turned out we/he isn’t/weren’t; I was just looking in the wrong place.

5.The Golden Rule is not for the weak
Treating others the way that you want to be treated includes folks with a different opinion. That includes on the internet. Yes, you have arrived at your opinion through research and careful thought. That doesn’t mean that people with opposing views haven’t gone through the same means to form their opinion. I am not saying there aren’t absolute truths. What I am saying is that the other person deserves respect, just like you. Walk away if necessary. If you don’t want people using hurtful words towards you, then don’t use hurtful words towards others.

This is a big one, so hear me out…

6. Autism is not the worst that could happen 
My initial response to my son’s diagnoses was, What can I do to fix him? After spending time reading the writings of adults with autism and families living with autism, my paradigm has shifted. I realized he is who he is and it is OK. He isn’t broken. He just needed new ways to navigate the world around him. I am always telling my children that everyone is different, and that it is good. I want to be clear. If your child needs speech therapy, get them into speech therapy. If they need help to learn how to deal with sensory overload, then get them occupational therapy. Yes, you should help them be the best them they can be. Just like you would do with any child. Autism, however, is not an affliction.

Yesterday I was told how much my son’s classmate loves my son. I was told it’s because my son is always kind to him. Of all of his accomplishments, I am the most proud of the kindness and love in his heart. When I was pregnant with my son, my husband and I used to talk. We decided that out of all of our hopes and dreams for him, there were two supreme things. He would always know we love him unconditionally and he would be able to love others. I feel like in its own way, things have gone full circle. How can that apply to you?

7. No matter the path, the goal is still the same
You may have just been told your child is autistic. Maybe you are a year in, like me. Or you may be the seasoned, warrior mom who is smiling at my naivety. Whoever you are and where ever you are on your journey, my goals,(yours, ours) as a mom don’t change with a diagnosis. I still want the same things for my son. The path has just changed.

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This post originally appeared on An Awkward Mama’s Life.

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Originally published: February 2, 2015
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