Daniel's Birthday Letter - Age 7

Daniel's birthday letter - age 7

Dear Daniel,

I wish you a belated happy seventh birthday! 

I'm not so much astounded by the number of your age at this point. I think I'm getting used to the passage of time. But as I pause to reflect on the year that you were six, I am astounded, nonetheless. I am astounded by how much growing up you did in this last year and how much progress you have made in such a short period of time.

You've grown, changed, and progressed so quickly in this year that it's been difficult to keep up. And we have been so incredibly busy! You've had ABA therapy 3-5 days per week. First it was with a DTT therapist, but I concluded she was harmful and fired her. We switched to a NET therapist, Miss Nicole, whom we all adore. You've also had OT thrice and speech twice a week, and somewhat frequent other miscellaneous appointments. Your sensory processing has improved exponentially; your flexibility is within normal limits; stereotypic behaviors are only evident on very rare occasions and to people who know you extremely well who also know a ton about such things. In fact, over the last six months or so, it has become the consensus amongst your teachers, therapists, and other relevant providers that if you were assessed today, you would not meet criteria for Autism. Whether it is gone forever or merely in remission for a time, or whether your other stuff just looked for all the world like ASD, we don't know. For now, it doesn't matter; and it's neither good nor bad. It's also not a crystal ball, so as much as your Type-A mama always wants to tell the future, I can't speculate meaningfully on what is to come.

What I can reflect on meaningfully is this moment and the past. At the moment, we are thriving. Your dad loves his work, spending time with our family, and is training for a 50 mile race in June. I am loving life as a SAHM, lack of sleep, very busy schedule and all. And you are Super Daniel! (You gave yourself that name for playtime not so long ago, and I'm stealing it because it's the perfect description). You are every bit the perfect, whole, unique, wild, wonderful, powerful, intense, adorable person that I wrote to on the day that we received the terrifying diagnosis, only MORE so. You are still opinionated, sometimes shy, prone to anxiety, and fond of predictable routines, only LESS so. (Except the opinionated part. That hasn't changed.) You are humorous and serious, spiritual and embodied, cerebral and emotional. You are "grow[ing] up to yourself." And you blow me away! 

We have reached this moment in our lives by acknowledging our challenges, seeking information on and help with the areas where each of us has struggled, celebrating successes, learning from mistakes, extending grace to ourselves and to one another when we blow it, and leaning deep and hard into our faith. I look forward to continuing to do lots and lots and lots more of all those things!

It's hard to believe that such a full year could contain more than I've already described. But, indeed, it has! The year was filled with great big milestones. You learned all sorts of things, developed new strengths and skills, had play dates without us, had your first sleepover, endured your fifth move, and finally got that sibling you'd been begging for. You are an amazing big brother to Baby Matthew. Before he was born, you made a series of videos intended to teach him life skills; you hold him, feed him, read and talk to him, and you're remarkably patient about having to share your parents' time and attention. 

You make friends even more easily than in recent years and have your second crush. (You and Lydia broke up in the most adorable seen that her parents or I have ever witnessed, and these days it's all about Raelea)! You continue to like math but say that you were "born to read." In the last several months, your ability to read has skyrocketed and you've been reading voraciously all sorts of different things. For a few months your great lit love was Harry Potter. You also love the Magic Treehouse series and you tolerate the non-fiction fact trackers that go with them.

Thanks to your new found flexibility, you are being introduced to new things that delight you all the time. New book series, movies, games, activities, restaurants, and people. Among this year's discoveries are bowling, swimming, making your own movies on the computer, maps and navigation, and chess. And you're begging for archery classes. 

This year my prayer for you and invitation to you are similar but not identical to last year's. I invite you to continue to stretch and grow; to risk and try and sometimes fail; to love and trust and dream, and try to fly. And also, I affirm the charge that you seem to have taken upon yourself. In an incredible way you are emerging. Continue to emerge, magnificent son. You've got this.

Love, 

Mom

My Autism Awareness Month rant for 2014 ;-)

So, it's Autism Awareness Month, and I'm all for awareness. While people are being extra aware this month, I'd like to ask that people be aware not just of the difficulties and problematic aspects of autism, but also of the fact that autistic people are people. Unique, wonderful, precious people. As worthy of honoring for all that they are as any other person. Moreover, I think it's important to make clear that eliminating autism isn't everyone's goal. It's not even the most widely-held goal of the people whose votes count the most (in my opinion). And what I want those of you who know and love me to know is that it's not my goal.

I'm all for providing loving, nurturing, supportive, empowering therapy to all people who struggle with anything, including Autism. Heck, our family gave up everything to do just that. I do believe in ameliorating challenges and difficulties, and always, always, always laying for all people, including Autistic people, a foundation for joy (and adult independence). When my son was given this diagnosis, it was made more than clear that we were supposed to be sad. So, we were. We were supposed to be scared. So, we were. I'm not saying there's not room for grief and anxiety. There is. Of course there is. Parents grieve stuff. Parents worry. But the constant barrage of symptom-talk and minimizing, pathologizing, and ignoring the things I love most about the coolest child I've ever met (I know, I'm biased) makes me flipping mad.

Until recently, Daniel had a highly educated, highly experienced, and incredibly pompous and negative "therapist" who seemed hell-bent on forming my child in her own image. I didn't fire her because of her intentions (those sorts of people are too common to be completely avoided). I fired her because it was working. I heard my child becoming a parrot in the living room, echoing back to her useless and bizarrely inaccurate/incomplete answers to even dumber questions. I saw his spirit caving in. I hated myself for subjecting him to it; all the while wondering if it was still "in his best interest." Answer: NO!

Before the diagnosis day when everyone in the room seemed so darned focused on getting me to see how scared I ought to be, that question would have seemed like a no brainer. But fear makes people hesitant as much as it makes us impulsive, and I wasn't sure whether that time I was at risk of being too hesitant or too impulsive. In the end, I was neither. When I told her that she wouldn’t be allowed to work with him anymore, her response was haughty, righteous, and cold. Tragic really. But without a second thought, I filled with play, joy, and laughter the hours she was trying (with a really weird version of good intentions) to use to break my kid. The results have been really good. He's doing wonderfully well in school, gaining new skills and strengths by the minute, we can go to church in age-appropriate peace, and he is so very, very, very happy! I am too. I did replace that "therapist" with someone amazing. She's a therapist according to our insurance company, which pays for her; but really, she's a highly qualified playmate, mentor, and a big-time Daniel-fan. She loves him. She's not afraid to say it. She loves him for all that he is, and only wants (as I do) to equip him well to pursue his own passions and dreams.

So as we are all being aware this month, I hope that we will focus our attention on love, kindness, and respect for people with autism. Before we talk about autism, let's talk about personhood. Let's open our minds and our hearts. Let's love. Let's respect. And let's remember that the reason other people aren't like us is because they aren't us. Let's teach our children to cope in the world that they live in, to respect others, to be responsible, to be moral, and to be kind. And with whatever energy we have left (and whether your kids are on the spectrum or not, there's not much left), let's get a hobby.

1/8/15

Neat observation from D this morning - i think it provides insight into how his brain takes in the world. I also think maybe next year he should do an ABA science project. He was explaining to me events from the backseat of the car when we were on our way to school.

"Matthew dropped his bottle so I got it for him. He saw it coming so he started fussing quieter and quieter until it got to his mouth."
Tiny moment, yes, but the events he described happened in such a short time that one would almost have to have experienced them in slow motion in order to pick up on M's observation and the decreasing decibel level.

1/4/15

So I will not forget it... I'm feeling really proud of D for making a really good choice, and helping me to repair a parenting goof-up. 

A while back I let D watch the first three Harry Potter movies, fast forwarding through the scary parts at first, then eventually letting him watch those during the day, with the lights on, pausing frequently to check-in, and only with me sitting next to him. He then started asking to watch the fourth movie, which I consider too scary for him; so I explained that the fourth book is too scary and told him to instead try to read the first book. I said reading the book would make his brain stronger and help him be ready to watch the fourth movie when the time came. He interpreted that to mean that he could see the fourth movie after he finished the first book, and because I didn't think he would actually read the first book, I didn't contradict him. Then, for Christmas, the only thing he asked for in his Santa letter was the first three Harry Potter books. I really didn't think he would actually read them (they are waaaayyy above what I considered to be his reading level and he ordinarily has a veeeeerry short attention span). But since they were his entire Christmas list, and I thought maybe I would read them to him later on, and of course, we want to support reading, Santa brought them. Anyway, since Christmas, he's been diligently reading the first book and I realized yesterday that I have a problem because I'm pretty sure he's actually going to finish the first book pretty soon, and that would mean I would have to let him watch the fourth movie. So, just now, I looked up the rating and explained to D that it's rated PG-13 and we talked about what the ratings mean, and he decided that it's not a good idea to watch that movie till he's older. Instead, he plans to keep reading the first three books, and when he's done, if he's still interested, we will read the fourth book together.