Thursday, May 03, 2012

Once more now, with should-haves

More than two years. That's how long it has taken me to come to somewhat peaceful terms with Fly and his PDD-NOS diagnosis. Pervasive Development Disorder Not Otherwise Specified. So, he has autism but it doesn't fit the typical autism mold. So mild, the diagnosing physician told JP and me, that in a few years no one would probably know.

I think Fly is at that point now. After finding out about multiple food allergies (typical of people on the spectrum), learning from a DAN doctor, behavior therapy, two years of going to occupational therapy twice a week and trying different tactics with Fly to see what works -- here we are.

We were told not to tell anyone because he would probably outgrow it. A couple other doctors we worked with later said they didn't think he would outgrow his main issues, but some of his challenges could be overcome.

Depending on which day you would see Fly, you would think he is a regular five-year-old boy or a kid with severe ADHD who has vocal stims and meltdowns and no impulse control.

And we don't medicate.

And so we live on the edge, literally. We aren't special-needs enough for the special needs community, but we aren't normal enough for the rest of the world.

A very frustrating edge to live on.

I have learned so much the past two years. I wish I could have blogged about our journey. But when I came to write, I just couldn't do it.

It was too painful.

And I'm pretty sure I've lost most of my sense of humor.

Having a child with Fly's challenges was so consuming, and yet I couldn't write about it. (And that doctor had said not to go around telling people because he is so I couldn't talk about it, either. Most of my real-life friends don't even know.) I have been frank and honest on this blog, and not being able to share what was really going on ... it shut part of me down.

I wish I could have blogged about the shame I felt when Fly was kicked out of soccer. When he was told not to come back to preschool. When finally, after a year of potty training, he could go on his own after treating him for a yeast infection in his digestive tract that we didn't know about. When I was judged by other parents for his public meltdowns. When he hit or bit other children. When he went through testing. Again. And again. When we found a lovely new school for him. When we started seeing breakthroughs. When friends started avoiding us. When a psychologist told us she couldn't see us any more unless we gave Fly medication -- which we didn't. When I felt I myself needed medication to help me deal with it all. When I just lost it. So many stories I could have, and should have, shared.

And then there is the Junebug. Sweet, easygoing almost-three-year-old Bug who has had to put up with so much. He continues to bear the brunt of Fly's wrath and controlling ways, and doesn't get his share of attention or time. But he is happy and smart, and tough, and I look out for what's best for him despite having a brother with challenges.

This blog started out about raising a baby boy, and then another, and helping them grow the best I could. I don't know where to go from here, both with my life and with this blog. In life, Fly is set to go to a regular kindergarten in August after a summer at social skills day camp, and I am so afraid the kindergarten won't be able to handle him and turn him away. Bug will go to preschool a couple days a week, leaving me wondering "What's next" for my life as well. In this blog, well, I have a couple other blogs I am known for but where I don't write so honestly -- but I will always love this first blog and the good memories I have making my first blog friends and sharing stories with other moms.

So I may or may not blog here again.

Fly's story started out here as a baby yet to be born, and I know his story will continue despite any challenges or diagnosis or trouble he gets into. And I plan to be there with him, helping him and helping to heal him.

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Blogger Freckle Face Girl said...

No matter how frustrating it gets at times, I think you are on the right path. I really believe diet adjustments, therapy, and staying away from medications really are the best way to approach these challenges. It is sad that you’ve mostly had to deal with it in silence. I can understand why though.

By the way, when both of your boys are in school next year, your me-time will go by too quickly. Suddenly, you have a chance to do things by yourself that you’ve been trying to do while entertaining kids. You’ll still be busy. Grocery shopping, cleaning the house, shopping in general, and all of those chores will get easier for a few hours a week.

9:17 AM  
Blogger Awesome Mom said...

((Hugs)) I can't believe your doctor told you not to tell anyone. That to me seems so wrong. It cuts you off from so much support and understanding. I get that labeling can be bad, but it does not have to be. I hope you post here more often so you can get at least some support with what you are going through.

9:41 AM  

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