Wednesday, July 30, 2008

Universal playgrounds

I've posted a few times about the playground issue because it's one I grapple with regularly. Playgrounds are such amazing resources for kids to develop all kinds of important skills and abilities, and most communities have them in one fashion or another. But so few of them are designed with a disabled kid in mind.

Now that we are raising a child with a physical disability it's hard for me to fathom that an inaccessible playground would ever be created in the first place. But like most people, until I got up close and personal with what it means to be physically challenged, I didn't spend that much time thinking about how inaccessible the majority of our communities are, not just playgrounds.

So now that I live in this world and am faced with it regularly, I feel compelled to try to do something about it and the playground piece is one I think I'd like to try to take on. I started to do some research and found out about this cool organization, Boundless Playgrounds, with the mission to help people like me get started on the road to building a universally accessible playground in their community.

If you go to the section of the site which lists Boundless Playgrounds across the country, you will find some amazing spaces that have been created for kids. It's incredible how even simple things like installing sand tables instead of sand boxes can make a huge difference for a kid in a walker or a wheelchair. Perusing the links to the different playgrounds is like visiting Santa's workshop. I'm so excited about the possibilities...and also totally overwhelmed at the idea of trying to make something like this happen around here.

I'm not sure where I'll go with this, but if anyone out there has ever tackled a similar project in their own community, I'd love to hear your story.

Potty time!

We're happy to report that Miss Isabelle is marching her way toward a diaper-free life! She is now wearing underwear all day except for naps/bedtime and has had few accidents. We've been "dabbling" in potty training for awhile now and just finally decided to take the plunge and let her go for it, and she's done great. I can't get over seeing her running around with her little bum in underwear instead of a big bulky diaper. It's all I can do to not give it a big squeeze every time she runs by.

Hannah expresses a lot of interest as well which is great. She definitely wants to try and knows when she's going/has gone. She just hasn't quite figured out how to hold it until she gets to the potty. We'll get there!

Wednesday, July 23, 2008

I can fly

Hannah decided she wanted to wear her butterfly wings to hippotherapy last weekend. She hadn't been in a few weeks and seemed kind of anxious about going ("I don't want to go see Tara, Mommy") so I told her that the wings would give her courage and strength.

She was still pretty tentative when she was up on the horse but she did manage to whisper a few commands to Tara and give her a hug at the end which was great. And of course as soon as she got off the horse she was talking a mile a minute again. ( "I did a good job, Mommy. Where did Tara go? Where's the other horses" etc etc)

I can see the value in consistency with hippo, because when we haven't gone in awhile it takes Hannah almost the full session to get warmed up and relaxed enough to gain something from it. But even when she's tense, her posture still looks great and she is able to straddle Tara pretty easily.

Hannah the courageous butterfly perseveres!

The wonder of imagination

Hannah and Isabelle are such a trip lately. This is such a fun age (they'll be 3 in September). Right now, they're big into comparing and pretending and imagining. For example, we 've been eating a lot of watermelon and I cut them into slices that are in the shape of triangles. Isabelle decided they look like sailboats so now when they eat watermelon, they each hold up their slice and move it around in the air and chant, "Sail away, sail away, sail away..."

They also take great pleasure in realizing things that are similar, like the same color or type of object or shape. One or the other of them will spot something in a crowd, like someone wearing a blue t-shirt, and yell out with glee, "That's a blue t-shirt, like the blue in the sky! They're the SAME!"

As it's high summer in these parts, we also have a lot of thunder and lightning storms. Isabelle has become a weather forecaster in the making, built largely upon her fear of thunder. When we go outside to play, she nervously scans the sky and asks me, "Are they dark clouds Mommy, or white puffy ones?" "Is it going to rain?" "Is Mother Nature going to make loud thunder, Mommy?" (My explanation of thunder has been that it's Mother Nature saying "it's too hot outside" and clapping her hands together to make thunder and rain to come and cool us off. B on the other hand, ever the engineer, tries to explain the science behind cloud formation, warm and cold fronts, etc.)

Isabelle has also gotten waaaay into her baby dolls lately. We don't have a lot in the way of doll accessories around here as I tend to choose more gender-neutral toys for them. But despite this, she is all about acting out the mother role, especially with her favorite and largest baby doll, aptly named "Big Baby." Big Baby comes pretty much everywhere with us now and the other day, as we were getting ready to leave our friend T's house Isabelle cradled Big Baby in her arms and clucked, "It's okay Baby, I know you don't want to leave T's house. But we'll be back again, I promise. It's ooookaaaay."

Isabelle has also gotten into this thing where when we brush her teeth, she first lists off all of the different items that reside in her mouth which we have to acknowledge when we brush. So tonight before I start to brush she tells me, "In my mouth there are two bunnies and a teddy bear. And, and, and a puppy dog. And a marching band! The marching band is playing and they are all dancing."

Hannah has her own toothbrushing routine which involves one of us identifying the various instruments in a marching band (we've been to a lot of parades this summer) and then humming some military march or another while we brush.

I could go on and on...the list of funny and quirky and weird things that they say and do is endless! I wish I could remember to write them all down when they happen so I can recall them when they're surly teenagers who won't even look me in the eye.

Saturday, July 12, 2008

More summer fun

I haven't posted any pics of the fun things we've been doing lately, so I'm going to try to catch up a little.

At the end of June, we did the Relay for Life with B's family in honor/memory of his dad who died of a brain tumor 8 years ago last December. This was our third year doing it; we do it every other year and the whole family participates (his mom, 4 older brothers and sisters and all of their kids). The girls were really into it and kept calling it the "big relay race." Hannah wanted to spend the whole time doing laps around the track which was great. Isabelle was more into learning how to use a hula hoop!

But most of all they loved hanging out with all 12 of their cousins and their Grandma!

Two weekends later, it was the 4th of July and we got to spend more time with B's family and all the cousins at the lake. This was the girls' 3rd year going and this time, they were old enough to really take full advantage of the summer lake experience. They stayed up late, swam, played, watched a parade, ate ice cream way past their bedtime, went in a paddleboat and a kayak...needless to say, 5 minutes into the trip home on Sunday afternoon, they were both asleep. This is saying a lot, considering they almost never sleep in the car.

Summer rocks!

Wednesday, July 9, 2008

Hannah's on fire!

Our girl continues to do amazing things. She is the Queen of Transitions lately. Her latest trick is that she figured out how to get off the couch (safely!) Now she wants to apply that skill to slide herself off any chair she encounters, including her high chair. She is definitely NOT content to sit and watch the world go by, thank God.

I found her standing up in her crib again this morning; this is the 3rd time it's happened so I think we can safely say that she's got that skill down pat. Last week, with a lot of cheering and prompting from us, pulled herself up into her walker, turned around in it and started walking. Independent mobility, here she comes.

She also asks to go up and down the stairs "by herself" constantly and she can make it all the way up just holding onto one of my hands. Going down is a little more tricky but she is just as determined to keep trying.

She's a regular pro at getting up from the floor into sitting now (well, she gets into a "W" sit which is not great on the knees/legs but gives her a solid base of support and some nice independence so we'll take it!) So now that she can get up, she is much happier crawling around from toy to toy since she knows she isn't stuck in that position.

Cruising laterally is getting easier as well. Little Miss H can cruise from one end of her play table to another, or from the play table over to the window.

And you should see her in the kiddie pool. If it's possible to do laps in a kiddie pool, she will do it. She starts out sitting nicely on her bum with her legs crossed, then flips over into a kneel, than back on her bum, then laying with arms dangling over the edge of the pool and legs kicking out behind her. All the while she and Isabelle are hysterical laughing.

All of this work and newfound skill is changing her body shape as well. Her little legs are becoming really defined and muscular and her thighs even seem to be developing some bulk to them. She's still our peanut to be sure, but she looks like a peanut who's been working out a lot!

Suffice it to say, I am THRILLED beyond belief with all that Hannah's accomplished lately. She is so determined and each success gives her that much more confidence and independence. As a result, she's been a lot happier and less frustrated. She and Isabelle can really play well together now too.

I know that Hannah has a long, hard road ahead of her and that some things will always be challenging. But she is still so young and has accomplished so much that I have very high hopes for where she's headed. You go, girl!

Tuesday, July 1, 2008

Paste on your happy face

After our appointment today we told the girls we'd go get a bagel. They were really excited because this means walking down the marketplace, a cobblestone pedestrian walkway with lots of interesting things to see. Last time we had an appointment we did this, and they loved it. Hannah cruised up and down the walkway in her walker and was a total champ. So we thought it would be a good idea to do it again.

It was another beautiful day so there were a lot of people out and about and thus, lots of people staring at Hannah with her AFOs and walker. She did great-not quite as good as the last time but she still made some good progress. But it's very stop and go and it requires infinite patience to wait with her while she walks a few steps, stops to check something out, asks to be held, walks a few more steps, and so on. All the while, people are stopping to look at her and us.

Most people smiled and were friendly, some just looked at her curiously. Several looked at us and said, "she's so cute," or at her and said, "you're doing great!" One woman let out a kind of screech and said, "Oh, looook at her! She's so cuuutteee!" And then she turned to me and asked, "Do they think she will walk someday?"

It takes SO much emotional and physical energy just to get out there with Hannah and her walker and some days it's even more of a challenge. Today was one of those days. I just was not in the mood to paste on the "I'm so okay with this" smile and humor people who approached us. I'm glad they aren't mocking or making fun of her, but it's attention nonetheless, attention we never would get if Hannah were a typical kid. And it really wears me down.

Maybe next time we will skip the walk down the marketplace for a bagel. It's a lot to do after an already taxing appointment. Or maybe next time the happy face will paste on a little easier.

The W word

We took Hannah to the physiatrist for another appointment this morning and anticipated making a plan for botax. Good news: he thinks her range of motion is really good and doesn't think there's a big need to do it right now! The other good news is that if/when we do go the botax route, sedation is available if we decide we want it for her. He gave some solid reasons for/against which made a lot of sense to me, such as:

-Sedation can help a lot if a kiddo is super anxious before and throughout the procedure
-Doing it without is a 20 minute procedure in his office versus 2+ hours in the hospital and with nothing to eat or drink at least 12 hours before
-Whichever route we choose, he'll support it and be happy to do it for us

My feeling at this point is that we'd try to do it without sedation first and see how she does. If it becomes a nightmare for her and us then the next round we'd sedate her. I'm just glad we have options and don't need to travel to Boston to have it done, which is what I was afraid might happen.

The other good news that came out of the appointment is that he thinks because her range of motion in her feet/ankles is so good, the next AFOs Hannah gets will have hinges. This is great because it means she doesn't need that added support.

I think all the work we've been doing with her must definitely be contributing to how well she's doing, because at our last appointment he thought we would definitely be ready for botax but now he said we can wait. Stretching, strengthening exercises, hippotherapy and swimming are worth their weight in gold around here! Summer weather definitely helps also. We're a pretty busy, active family.

The hard part of the visit (and there's always a hard part) is when the PT asked about our equipment needs which led to a discussion about adaptive strollers which meandered into the talk about the "w" word: wheelchair.

It even takes my breath away to just type the word so you can imagine how I'm feeling about it.

The physiatrist was quick to jump in and say that first of all, this was not something we needed to think about right now. And second of all, it might be something to consider only if we got to the point where Hannah was doing great with walking indoors or at school or short distances, but needed extra help when going longer distances and would rather propel herself versus be propelled by someone else (like in a stroller).

It all makes sense but I never in a million years thought we'd be talking about wheelchairs. For me, that feels like the last frontier, the "yes your daughter is handicapped" place. More so than the handicapped placard, the walker, the adaptive seating.

I will have to do a lot of processing, mulling over and crying about this before I can come to a place of acceptance. For now I think I'm just going to put it on the backburner and focus on what great things our girl is doing now. And hope that somehow either she can manage to make her way in the world without one, or I can figure out a way to be okay with it if she does need one.