Wednesday, May 18, 2011

ADHD, a year later (part II)

Recently, I've received emails from different friends (well, I consider them friends, for emailing me with such personal questions) who have suddenly been presented with an ADHD diagnosis, wanting to know what my experience has been like. They are where I was a year ago, trying to decide between the medication vs. non-medication route. I have had the opportunity to share with them what we have done and I'd like to document it for those who might be wondering but not asking; for my own personal record; and so Ainsleigh will someday be able to read this.

First, let's all repeat: Every child is different. I am not a doctor and I'm not going to write a self-help book anytime soon. (are you still repeating? because I just meant that first sentence. you can stop repeating now) Ainsleigh was diagnosed with ADHD Inattentive - the "quiet" ADHD. Focus is the issue. Which is kind of a disservice to her, since she isn't inattentive to EVERYTHING. Just to...stuff she isn't interested in. Or stuff she's overwhelmed by. Give her a pad of paper, or fabric and a Barbie, or a TV show, and a parade of elephants through the room wouldn't distract her from the task at hand.

We have not medicated Ainsleigh. It's something I wonder about every now and then, but then she'll have a really good week or so and I think, "This is a learning opportunity for us."

I've read a lot about the pros/cons of medicating, so I am not at all critical of those who go the meds route. I just wasn't sure it was for us. Our pediatrician said there were three options: meds only; meds/modifications at home; modifications only. We've gone the modifications only route. These include things like making sure she has enough to eat; getting enough rest; having her downtime; talking about reactions; etc. I'll explain a little more.

You'd think I'd feed my kids enough, right? Isn't that what moms are FOR? Ainsleigh has always been small for her age - 10th percentile - and has eaten healthy, but small, portions of food. Then along came her brother who can PACK away the food and I found it startling. As he has grown, he has been very vocal about needing MOREFOODI'MHUNGRYWHATELSECANIEAT?!?!?! I've been giving Ainsleigh more to eat lately and I've noticed that she is eating a LOT more. And she isn't a sweets nut - she loves fruits and vegetables (and nuts). I have to stop myself from being alarmed at the amount of oatmeal she'll eat in the morning. It's more than *I* would! And then she'll drink a green smoothie (spinach, carrots, oranges, apples, frozen berries, etc.). But I've had to retrain myself to remember: kids are growing (duh); a kid whose appetite has been satisfied can focus better; she needs it. I also have to stop myself from wondering if I've underfed her in the past. I don't think I have, but even wondering that doesn't help me going forward.

Sleep - that's a huge thing. Sometimes it's hard for her to fall asleep, and on those nights I'll do some relaxation/massage techniques with her. I can't remember if I read it somewhere or a friend told me about it, but it's basically helping them visualize each body part and saying goodnight to each one. I'll rub her back/arms/legs/head for a few minutes and then start at the top (head) and I will say each part and apply pressure (either massage or just weight) "Your scalp is going to sleep. Your ears are going to sleep. Your neck is going to sleep. Your shoulders..." etc. She really likes it, and Donovan will occasionally ask for it as well. I notice it more on the nights we're getting to bed a little later, or the kids are wound up from the afternoon.

Her bedtime is 8, but usually she's going to sleep around 8:15-8:30. I would imagine that with summer fast approaching the bedtime will be pushed to 8:30. She usually wakes anywhere from 6:15-7:30. Every now and then she'll sleep later and I attribute that to a build-up of fatigue.

This kind of ties in with downtime. She has always been the kind of kids who likes to have some time to herself. Sometimes when she gets home from school she prefers to go into her room and play by herself. Most of the time she prefers to go outside, but I see her natural separation every now and then. I'm the same way. I need my me-time. Sometimes when I can see she is about to have a meltdown, I'll head it off by asking if she'd like to go play by herself. It isn't a punishment. If she doesn't have downtime, then sleeping at night is harder. This downtime is one reason I hesitate to combine her and Gemma into a shared bedroom. Joel thinks the girls should bond, but I don't know if it's a good idea just yet.

Several years ago, I picked up the book When I Feel Angry through the book orders at school. It came in a "feelings" pack. It's actually a really good, simply-worded book. There have been times in the past when she has been upset and I'll just pull the book out and leave it on her bed. This does not always go over well. BUT, there have been times I've seen her pull it out on her own, even now. This book has helped us coach Ainsleigh that as she begins to overreact to situations to take deep breaths. Honestly, I thought it was a futile exercise until recently when I watched her begin to get upset and then saw her step back and take some deep breaths. I almost began to applaud. Seriously, it was that little sign I needed that these little things I'm doing are actually going to WORK. Well, not all of them. But SOME. And I'll take that. Anyway, talking to her about the right way to react has really helped.

And then, as far as schoolwork goes, I just have to be super vigilant about asking her what homework she has and what she needs to work on and if she put it in her backpack to take back to school (such a simple step, and yet so easily overlooked!). But even this is getting better and I see her taking responsibility for this on her own. Math can be hard (we need to work on our fractions this summer, but she knows her math facts), but she excels at spelling (most of the time) and she writes pretty well. Her reading (as I mentioned yesterday) has improved dramatically. I have to remind her to practice the piano and brush her hair and pick her dirty underwear up off the floor (eck). In short, a lot more reminding. Donovan sees stuff she doesn't. He figures stuff out that she is blind to. Different personalities. That's been the hardest. I'm much more like Dono.

For myself, I've worked on patience. My mind works fast. Probably too fast, at times. I always have a to-do list and I'm always in the middle of five of those things. Quantity doesn't always translate to quality, though. I'm marginally good at a lot of things - I don't think I really excel at any one. My mom has reminded me that some people's brains just work slower. My mom, for example, is very smart, but she doesn't have the frenetic video-gameish mind that a lot of people do. She's very methodical. I see that in Ainsleigh. I am working hard to slow down.

Ainsleigh began piano lessons this year. I was hoping that learning to read music would help with her fluency since in music you cannot skip notes. Her teacher has been fabulous and used some new program by which Ainsleigh effectively did the entire first year in a couple months. Her teacher said this format was definitely only for certain kids, and Ainsleigh is one of those certain kids! I am actually kind of surprised whenever I go in to observe her practice to hear that she's actually doing it correctly (I'm so lame).

About a month into the school year, my sister asked me if I had read anything about Omega-3s. "That's the fish stuff, right?" I'm kind of an expert, obviously. She said she had read somewhere that some studies showed it might help improve focus. Now, "some" and "might" are pretty vague terms, but I figured it couldn't hurt (when properly taken). And Costco carries delightful sealife-shaped gummy vitamins that make the kids feel like they're eating fruit snacks in the name of health.

I don't know that any one of the above has helped. I don't know if even the combination of the above has helped, or if just with age and her own learning she is adapting. The point is, things are getting better. Not perfect, not without frustration, but better.

I think at the core, for anyone with a child facing a learning disability (or not), you need to go with your gut. Your educated gut. Do the research, but also know when you've overloaded and overwhelmed yourself and stop there. Try a few strategies, but don't let it crush you. Figure out what you can handle, and then go from there. Victories that may seem insignificant to others (and even your pre-mother-self) will become monumental. You stop dreaming of a scholarship to MIT and start dreaming of them finding true joy and peace in life.

I think that's what I've figured out for myself - I'm not going to win a very public award or become a spokeswoman for someone. But I find real joy and peace in my life with the milestones we, as a family and as individuals, reach. I am a spokeswoman for my children. And that cause is what drives me. That cause is what has sent me back to the library for more tips. That cause is what has fueled me to try a dozen different things for making homework easier, until we have found what works for us. That cause is what makes me break down in tears in between stacks of fruit and patio furniture at Costco when I read that my child is back on grade level after falling far behind.

A learning disability isn't the end of the road. It's just a new road. It might be harder at times, and seem impassable at others. But sometimes the view is far more fabulous than that original road. I'm grateful for this road.


Lisa said...

Thank you for sharing. I especially liked the end, about doing as much as you can, then when you get overwhelmed, stop. That's what I've had to learn to do with Jonathan. I simply can't spend every minute trying to fix him. He would be miserable, I would be miserable, Aaron would be completely ignored. And maybe it wouldn't even help, you know? Change doesn't happen over night. Line by line, slowly, with work, change can happen. And I soooooooo know rejoicing in milestones that seem so little. Sometimes I want to scream to the world, "Jonathan picked up AND ate an APPLE today!!!!!!" And then I realize that everyone else's kid does that, and that they may not realize all of the things involved in that--picking up something cold and wet, biting down hard, feeling the juices go through his mouth, swallowing--these are all huge things for him! But from the outside, it's an apple. Oh well.

janine said...

I have to tell you, I had a little chuckle a couple of weeks ago as Ainsleigh and I played a duet of one of the songs she was learning. As she started to realize how good it sounded....this smile just crept onto her face and she started to was a happy moment! I think you are doing a great job!

P.S. Maiya takes the Omega-3 but the dose is much higher than what is recommended for kids for it to really make a difference with ADHD. I don't know much about it but I know my mom has done a lot of research on it.

Annie said...

GREAT! Thanks for sharing.