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What I’ve Learned in 9 Years of First Days With My Son on the Autism Spectrum

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Today my son Jackson enters middle school, and I am looking back on nine years of excitement and butterflies, hugs and goodbyes, smiles and waves. Both his, and mine.

I am feeling all of the feelings: excitement, joy and wonder, but also anxiety, worry and doubt. Today, my son will continue down his own journey toward independence. I am beyond proud of him for all he has accomplished. All that he has disproved and all the barriers he has crashed along the way.

It has been a bumpy road, with twists, turns and unforeseen obstacles, but he has emerged out of elementary school a smart, strong, funny boy with the world at his fingertips.

Jackson started preschool at 2 1/2 years old. At the time, we knew he was precocious and curious. We knew he had a great sense of humor. We knew he was a little hard to wrangle, but we didn’t really worry. When he started preschool, the school had a speech therapist do quick 10-minute evaluations on the children. She detected something. I called her and she said she wanted to see him ASAP. I was put off by her demeanor.

We called Early Intervention. They came out and evaluated him. They recommended speech and occupational therapy several times a week. My mind spun. My heart broke. But there was no time for that. It seemed like every moment without action being taken was time lost.

We brought in a private speech therapist to work with Jack at home. She mentioned the phrase “PDD” and told me to look it up. She left. I did.

PDD – Pervasive Development Disorder. Autism.

I was shocked initially, but every day since then, I have not wallowed or sunk. I have forged ahead getting my boy what he needed.

He went to a new preschool that was better equipped to teach him. It was a school that happened to be a good fit. It was 20 minutes away, where the kids knew each other. He did not have the luxury to go to school with his neighbors in his community.

We tried attending the district’s special needs preschool. It was not a good fit. Jackson was happier in his other school. We stuck with that for the next two years.

He went to speech and OT twice a week for two and a half years. His therapists became my comrades.

He started kindergarten in public elementary school. He, and I, barely knew anyone. He was fine. I worried. I had no idea what lay ahead.

I’ve learned more in the past six years that Jackson has been in public school than I think I have in most of my life. I’ve learned what it’s like to have to fight. To not be able to trust the people whose job it is supposed to be to help. I had no idea then that the system would seem deliberately made hard to navigate. That I would have to rely on friends who had experienced it with their own children to tell me how to travel down this road. That there are things no one tells you ahead of time. That there are things available, if you know where to look, who to ask and how to get them.

I’ve learned what it means to advocate for someone. To fight, and put yourself on the line for another person.

I’ve learned that I had more to talk about with my son’s teachers than I did with some of my friends. I’ve learned that teachers have the capability to do great things. That they can be great allies and advocates for their students. Some truly are heroes.

I’ve learned sometimes it’s better to refrain than speak when it comes to conversations about parenting. That worse than feeling excluded, is to feel pitied. Friends mean well but don’t always know what to say. And that’s OK. And some just don’t, can’t understand where we are coming from. And that is OK, too. They have their journey, and I have mine.

I’ve learned that empathy was a lost art and not something every child understands. Some children think inclusion means to tolerate. It does not. Some parents think that is enough as well. It is not. I’ve learned that we still have a ways to go in that department, but there is still time, and there is hope. And there is mostly kindness.

I’ve learned that my son liked to be with other children, and as long as they were in close proximity, he seemed happy.

I’ve learned that there is kindness out there, but you have to know where to look for it.

I’ve learned that my son is a beacon. He is hope, and he is kindness and he is love.

I’ve learned when your children are riddled with anxiety, and you are too, you must practice what you preach. You must also be mindful, count to 10, breathe, and take a moment.

I’ve wished I were a speech therapist, an occupational therapist, a psychologist and a social worker some days. I’ve wished I knew more to help my son.

I’ve learned the phrase, “Different, not less” and had to remind myself of it time and time again.

I’ve learned I am human but still hold myself to a high set of expectations. I still like to be in control, and I’ll never be content with myself. I wish I could change this. I do not want my children to feel this same pressure I put on myself every day, so I need to find the balance between pushing and challenging myself, and knowing it’s OK to make mistakes. That we learn from mistakes. And to not be ashamed of those mistakes.

I’ve learned that to move forward in this world, we can’t worry about what others think. Although we must accept and respect others’ opinions, we do not have to accept them as our own. But, to move forward means to make progress, and we must allow ourselves to grow, excel, strive and not become complacent.

I’ve learned that no matter how hard I advocate for my child, he will be his own best advocate. By putting himself out in the world and experiencing it. By allowing others to be influenced by him, and for him to allow them influence him, too (when appropriate, of course).

I’ve learned I am not alone, even though it feels like I am sometimes (OK, a lot of the time). I’ve learned that help is a phone call away, usually involving a bottle of wine and maybe some sushi.

I’ve learned to find perfection in imperfect moments.

I’ve learned that life doesn’t turn out like we think it will, and that it is way easier just to go with it rather than fight it, even though that is often hard to do.

I’ve learned to love. Unconditionally. To throw away expectations and rewrite your story.

So, today, as I pile in the car the boy and the girl who’ve brought me all of this knowledge, I reflect back on these nine years of first days. I load up the backpacks and lunch boxes and I send my boy off to the next phase of his journey. His life may be more difficult, but I believe will learn freedom and independence, and to advocate for himself. I will be forced through the procedures and rules that exist to take a step back and let him figure it out for himself. I hope he will be OK. I hope he will be happy. I hope he will understand why he has to do it on his own, learn for himself now. I hope he knows that although I may not be able to help him all the time, I am still here for him, and I always will be.

His future’s so bright, he’s gotta wear shades.

Follow this journey on My Special Boy.

Image via Thinkstock Images

Originally published: September 16, 2016
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