Don't forget the siblings

Came across a great article posted on the Sibling Support Project website, "the only national effort dedicated to the interests of over six million brothers and sisters of people with special health, mental health, and developmental needs." I found it very timely as we've been thinking about this stuff anyway, which prompted our visit to the child psychologist a few weeks ago. I share it here so that other parents of kids with special needs, who also have other children, can check it out.

A little bit "off"

As time goes on, I see patterns of behavior in Hannah that indicate when "something's up" with her. I don't always know what it is, which frustrates me, but I can tell when she's off.

So in the past few days, here are the things I'm noticing that are a little different for her:

-She's gritting her teeth together a lot
-She's eating A TON
-When she naps, she wakes up hysterical as if from a bad dream, and then I go up and settle her and she falls back asleep again (normally she just sleeps through until she's ready to get up, and wakes up either whining a little or calling to me to come get her)
-She's more floppy
-She's more whiny
-She's more hesitant to stretch her limits (i.e. she keeps saying she's scared to reach out for the grab bar and step up onto the stool in the bathroom, something she did easily and fearlessly up until about a week ago)

I'm thinking it might be another growth spurt, and maybe those crying spells when she sleeps are muscle spasms. Not sure though. She is also going through the longest stretch ever between botox treatments, because we have a consult about selective dorsal rhizotomy on Monday and they wanted to see her when it was totally out of her system.

It's hard to see her go through this, and I wish I could do more to help her. But what I CAN do is go easy on her a bit, let her be a little more lazy if she wants to be, as she is not afraid to push herself when she's feeling good so if she needs a break, she deserves it.

Why adaptive programs rock

This winter, Hannah and Isabelle participated in an "adaptive" tumbling class at a gymnastics school near us, where Isabelle took a class last summer. While looking at ways to build Hannah's strength and keep her active this winter, I learned of this new program starting up and jumped at the chance to sign on, especially since it was directed at her age group and they welcomed "typically developing" siblings or buddies.

The class was ideal on so many levels. First of all, it was only my girls and two boys their age who are on the autism spectrum so it was a very small group. This really benefited Hannah, who can get so easily distracted in big, noisy groups and would not have gotten as much out of using all of the equipment and facilities in that setting. Also, the instructor is a young, energetic woman who seemed to intuitively know how to relate to each of the kids despite their very different personalities and needs. She didn't try to keep to a specific routine (different from the class Isabelle took over the summer) and while she offered up SOME structure, she also let the kids take the lead a great deal. This slower pace made it easier for Hannah to keep up with everyone and it was also great for me that the instructor was not afraid to jump right in and facilitate Hannah's participation, something I'm usually doing when we get involved in "mainstream" programs.

The full benefits of participating in an adaptive program like this didn't fully sink in until almost the last week. But one week, when the regular teacher was out sick, a substitute taught the class who was new to our group as well as to the school itself. It became clear very early on that she was not given a heads-up on how loose and low-key our class was, as she kept trying to insert structure into the routine that the 4 kids, their helpers and the teacher had created over the previous weeks. And it wasn't working out at all. I sort of felt bad for her as she struggled to get all of the kids to go through each station she'd set up: Hannah was just kind of standing around, the two boys on the spectrum were running in different directions, and Isabelle was methodically following the teacher's lead. It was a little crazy. At one point, the sub had everyone go upstairs to the stretching area (which we did every week) and she started the routine before Hannah and I could get there with her walker. That's when I spoke up and said, "Could you please wait a minute for us to get there?!" She clearly missed the point of this very special class and it brought home to me the fact that I was so comfortable with the way things were run with the regular teacher and what a relief it was to be in such a setting, where there were no outside expectations or rushing around trying to get Hannah to keep up or worries about what people would think of her. It was so nice to just relax and let Hannah enjoy herself.

I think it is so important for Hannah, and all kiddos with disabilities, to be a part of their community and participate in activities with other typically developing kids their age. But sometimes, it's really nice to be involved in something with other kids like Hannah. And it's great that siblings are welcome because Isabelle is getting just as much out of it as her sister.

Next on board for this spring/early summer: an adaptive dance/theater class!

More moving and grooving

With a little bit of help, Hannah is continuing to do some great things. B was able to install some bars in our bathroom and now she can get inside, on the stool, and get herself to the sink to wash her hands or lower herself to the potty without help (just some spotting to make sure she doesn't hurt herself!) Check her out in the video below-and a note that the spots on the toilet are just where the potty seat has banged into it-our bathroom is really not THAT dirty!!!

The second clip is of Hannah coming up the ramp from our driveway to our back door doing a side step. Usually we leave her walker at the bottom of the ramp and then get her out of the car and place her in the walker and up she goes. Every once in awhile, she decides she would rather leave the walker behind and so she walks up sideways on her own. This is SUPER because it really works a muscle group that I can't remember the name of right now, but that is pretty hard to work unless you do this kind of motion (same one that you do when you make snow angels, and a muscle group that's notoriously tight in kids with CP). And what's more super is that when she goes up this way, she has to lead with her left leg which is the weaker/tighter of the two. LOVE when she gets those great PT exercises in all by her own volition! That's what it's all about...

triggers

I think post-trauma and grief are like this: you go along feeling fine and then all of a sudden, something hits you like a ton of bricks and you could, if you let yourself, go back to the hard, sad, overwhelming place that you were in when you first experienced a loss. It's hard to know what will set it off, but it's like your grief and trauma have these land mines scattered around your life and sometimes you unknowingly step on one and set it off.

The two triggers that got set off most recently:

The girls' (and especially Hannah's) medical files: I usually avoid reading through them unless I need to. Recently I had to go digging in Hannah's because we are seeking a consult for selective dorsal rhizotomy (more on that another time!). All I had to do was look at the copies of her quick brain MRI and I was immediately launched back to that day in the NICU when they told us about her PVL (brain injury).

Any meeting with a new therapist/medical professional: We are looking into getting a new PT (more on that, too, some other time!) so we had a consult with someone last week. Despite the fact that this PT was a very warm, kind, and seemingly knowledgeable person, I felt naked as I introduced her to Hannah, anticipating her judgment like we were getting a CP diagnosis all over again. I could barely hear her positive comments about Hannah and focused instead on what she said about "lack of protective reflexes" and "may not stand independently."

I can bounce back pretty quickly from these triggers but it still surprises me, the strength of their power.

sometimes all you can do is breathe

I took a Hatha yoga class with a good friend last weekend. I haven't done yoga in a looong time. I'm still sore! I realized how out of wack my body is from my pregnancy with Sam. I was proud of myself for not trying to push through all the poses and be comfortable with taking the easiest option for many of them. And it was good to try to relax although it was hard for me to turn my brain off (probably shouldn't have had that second cup of coffee right before class!)

One thing the instructor said that stuck with me. She was reminding us to stay present, focus on our own experience, and breathe. She extrapolated from yoga out to the rest of our lives and the various things that might cause us anxiety and stress. She talked about how in the midst of those moments, sometimes the most important, and only, thing we can do for ourselves is breathe.

This really resonated with me. I've had those times when I am so overwhelmed by one thing or another and I am barely breathing. It's a shallow, chesty breathe that just barely sustains me but does not energize me in any way, and might even make me more anxious or stressed. This instructor reminded me of the power of a deep breath, even when it's the only thing you can do.

So here I go...gulp...BREATHE.

Moving and grooving

Hannah has been working so hard on this for such a long time. I'm so proud of her!