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I Know Things Now

Today my son 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 that 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 ten minute evaluations on the children. She detected something. I called her and she said she wanted to see him ASAP. I was very 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…blah, blah, blah…autism.

Wait! What?

I was shocked. And outraged. I could deal with being told Jackson had attention issues, but autism?? No. No way.

But, he did. And 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 typical school that just happened to be a good fit. It was twenty 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. We were in the trenches in the Battle of the Boy. FOR the boy.

He started kindergarten in public elementary school. He, and I, barely knew anyone. He was fine. I worried.

I had no idea what battles lay ahead.

I’ve learned more in the past six years that Jackson has been in public school, and part of our community, 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. The system is, indeed, rigged. I had no idea then that it was 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 that 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 could go on and on about this topic in particular because, thanks to a few very dedicated women, Jackson overcame obstacles and was given the tools to succeed in school, which translated directly into him becoming more self confident and self assured to emerge out of his shell and show us his true personality, which is awesome. These women, too, became my comrades. They hold a very special place in my heart and I hope that they know this. I wish them all the best things in life, because what they do is selfless and miraculous, and they deserve great things in return for their hard work and dedication.)

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 and, I think, that these kids of this generation are the first to really have to live in a world where there are different learners, different ways to be in the world than the way they live. It will be interesting to see this generation in 20 years. I think they will do great things. Be great people.

I’ve learned that my son was happy, even if I couldn’t see why. I’ve learned that he liked to be with other children, even if they barely paid attention to him. As long as they were in close proximity, he was happy. He didn’t need to engage very much in order to feel like he was included.

I’ve learned that worry never goes away. Most parents will tell you that but my worry was not of the “Will he get picked last?” variety, but, rather, “Will he get picked on?” kind.

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 ten, 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 that I am human, but still hold myself to a very 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 that I put on myself everyday 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 that I am not alone, even though it feels like I am sometimes (okay, 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 that even if I’ve read it, or heard it from others, I need to fully live something myself in order to truly understand it. I’m not that quick truth be told. It takes me a little while to catch on. I used to think this made me dumb and I was ashamed of it. Recognizing it though, I realize it doesn’t mean that at all.

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 to just go with it rather than fight it, even though that is often very 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 will be more difficult but he will learn freedom and independence. He will learn 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 okay. 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.

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Categories: Uncategorized

Jbear

5 Responses to “I Know Things Now”

  • Christine deSimas says:

    Love love love this!! And you guys. ??????

  • Christine deSimas says:

    I put hearts and it came out question marks. Lol. I do love you guys, I am not questioning it.

  • Sue Tannor says:

    Jaime, you are an amazing mom… Your children are mighty lucky to have you at their backs! I hope you are keeping these posts and will combine them into a book…. To help other parents navigate the confusing system, to help them appreciate the problems and complexities of raising a special child, to allow them to see the emotions and feelings that you share.
    We wish both Jackson and Ella successes in the coming school year ! They cannot miss with your love and incredible support!
    xox
    Sue and Rich

    • Jbear says:

      You are too kind, Sue. Thank you. Know that you are always in the back of my mind, having worked so hard for the rights of special education students. Jackson has been lucky to have many wonderful teachers and I’m sure many of your former students feel the same.


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