Friday, June 21, 2013

Where Are They (Ahem, We) Now?

Right now I am imagining someone just stumbled on this blog.

This new reader knows a child who sounds like my Rooster did several years ago. Reader wants to know... how have the recent years been for Rooster?

Of course, Rooster is a case of one, and the child Reader knows might have a very different path, or a similar one... we all have unique journeys.

But I was once like this Reader, and I found similar stories to my own, and wanted to connect.

So, Reader, if you know Rooster and his family (my husband, J; my daughter, Peaches; and myself) struggled substantially through the difficult years when he was diagnosed with autism and began school, let me tell you a little about our trajectory from then to now, the summer before fourth grade. But I will work backward.

As I type, my kids are pretending to run a dance studio. Peaches, who happens to be typical, plans, naturally, to be the star. She has hired her brother to be her bodyguard, dressing him in almost all black, including the large, oversized shades. The one exception is the pink and green bow tie she insists he wears. She pays him from her piggy bank, knowing he is motivated, as he is saving to get his own talking toy like the one she purchased from her savings. Today, the toy that has a voice I found grating, came on in the other room. Rooster told Peaches, "I think you are neglecting your toy. Clearly she needs more attention."

Rooster's sister is his most accepting and inclusive playmate, though they fight like siblings do. Looking back, finding friends has been the hardest part of our journey with autism. They are few and far between, but there ARE friends, and they are rare treasures. Rooster still has unusual expressive language. He still processes slowly, has somewhat restrictive interests, and can melt down. However, the fears I had that he would never take turns, share, express empathy, engage in imaginative play, or sustain a conversation proved unfounded. I would have loved him with all my heart no matter how he developed, but he has continued to show me that he is full of surprises of many kinds, and while he is on his own unique path, it's a path of certain growth.

Rooster continues to struggle academically. He has dyscalculia, a math disability, and ADHD, in addition to autism. He needs an aide in the general ed classroom, and a resource support and a gifted ed therapist for math. Reading appears to be his greatest gift, and today we will go to the library to wallow in the wonders of words. Our family shares a deep, abiding joy in books.

If, Reader,  you are wondering what tools have proven most useful to our boy over the years, my opinion is that we benefited tremendously from (not in this order necessarily, except the first one, which has been, beyond any shadow of a doubt, the key that unlocked all the other resources time and time again):

  • the blogosphere (other blogging families have been virtually lifesavers)
  • families we have met in waiting rooms and autism meet-ups
  • social stories
  • ABA
  • gfcf diet (NEVER in my wildest dreams would I ever have believed that until we tried it)
  • time, patience, hope, love
I have said it before and I will say it again: doctors never provided us much value, despite going to the ones with the best reputations and highest bills. From general pediatricians to a variety of specialists, their advice and tools were mostly mediocre and sometimes wrong, painful, and detrimental. We do have a good developmental pediatrician now, but the best doctor we have ever seen is the one whose doctoral program focused on special education, not medicine. Other things I wish we had skipped: speech therapists provided by schools, ADHD medicine (we did a few trial runs before realizing they were NOT right for our Rooster), and osteopathy. We would never advise others against anything (see the unique path philosophy above), they just didn't fit our needs.

Now, if you will excuse me, I need to check on the bodyguard and the diva, and get us ready to pick up some amazing stories in the library. Amazing stories are like life blood for this Roostery clan. 

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