On the go, go, go

This past weekend was go, go, go. Saturday was a balmy 70 degree day here in Indy. We decided to head to the zoo. We purchased an annual zoo membership in December after being entranced by the Christmas light displays and zoo hours open until 8pm. Then January and February set in. Frigid, raw cold. No zoo for us.

I think every family with small children all had the same idea Saturday. It was stroller central. It’s funny. I’ve noticed our stroller usage is different than how other parents utilize a stroller. While other parents will use the stroller as transportation for the child, we use it to haul our huge diaper bag, my purse, etc, and have Kaia push the stroller. Unless, like on Saturday, we have Kaia nap in it – which normally I never, ever do because I am a total nap slave. She needs to sleep in her crib. I revise that – I need her to sleep in her crib. I need that break each day. It’s just funny to see all these other kiddos hanging out, chillin’ in their ride, while Kaia, with proud intent, determinedly pushes her stroller along. I want her to have every opportunity to move her body, to know how to use her body for her own transportation.

I had to nurse Kaia a couple times at the zoo and it was pretty inconvenient. There’s no real great place at the zoo to nurse a toddler. We found an empty amphitheatre but later another Spanish-speaking family and children were hanging there too. There was no other place to go so I nursed her there while all the kids played around us. I wondered for the first time if other people think Kaia might be getting a little old to be breastfeeding. I sat her up to pat her back and burp her and stood her up and realized how big she was getting. It was in stark contrast to a woman I had just witnessed in the women’s restroom nursing (or attempting to) an 11 day old baby. The baby looked like a little bird to me. She had to literally show the baby the nipple and after several attempts finally got the baby to latch on. Kaia was like that before too but now is like a little barracuda. She now lifts up my shirt if I make the milk sign to her. There was no way I could’ve nursed Kaia in that restroom. Every flush of the toilets and rocket launch noise of the hand dryers running intermittently would’ve prevented her from nursing.

Instead, I peacefully nursed Kaia in the amphitheatre, while I watched the large-by-North-American-standards Hispanic family kids play contentedly around us. My husband snoozed on a bench nearby. I felt the wind blowing gently through my hair and the sun shining on my face. My little girl suckled at my breast, and I sensed how truly good life was in that moment.

Kaia also continued hippotherapy last week. She was standing! while riding on the horse this week. She’s been riding a different horse than Molly (the white show pony on the first day). Her newest steed is a brown horse with white markings on the face. He has a thinner back. And, get this, his name is Fairy Tale. Can you believe that? Fairy Tale. How cute is that? After hipportherapy we went up to a friend’s house for a playdate. Kaia will be starting a new OT at the end of April and the only time she has to fit Kaia in is immediately following hippotherapy so we'll have to race back home to see her. Until then we're going to enjoy being out and about early in the day on those days. But the good thing is then we'll have Fridays completely therapy-free. I'm looking into another storytime we could go to on those open days or maybe we'll just do other fun stuff. It's so hard to get out with all her therapies. I'm also looking into starting her in a kindermusik class. The girl isn’t a bit overscheduled, is she?

Sunday we went to the circus in the late morning. I was so excited to go to the circus. We were all a bit disappointed, though. I remembered the childhood magic of the circus, but the reality of the thinly veiled animal mistreatment, borderline talent, annoyingly overamplified sounds, and the mixture of the smell of cotton candy and animal dung just wasn’t as magical as I’d remembered. $18 a seat wasn’t too magical either. We managed to stay for almost the entire show then Kaia had had it and got pretty cranky.

We also spent some quality time out in our front yard/driveway this weekend so that Kaia could practice walking/pushing her various toys. Our whole neighborhood comes alive in the spring. We don’t have a playground in our neighborhood so the kids really just play in the street. It sounds like the projects. It isn’t, but I do think these kids could use a decent place to play. All the kids come running when Paul is out with Kaia. He’s like the pied piper. He’s always been like that, even before we had Kaia. Back then it was all the neighborhood preteen boys (who are now, I can’t believe it, in college). Paul is the cool old guy. The guy that knows how to do all the skateboard tricks that their Dads can’t do. Paul had a half-pipe in his backyard growing up so he is more than a decent skateboarder. But all the kids are in awe of someone who is their Dad’s age throwing those kids of tricks, and ask “Are you sponsored?” I know he loves it.

One very cute little neighbor girl always come to see Kaia when we are out. She is such a sweet girl. She is 5 and will be starting kindergarten next fall. She just loves to come see Kaia. On Saturday we had Kaia’s wagon out, her fancy radio flyer wagon. She alternately likes to push and ride in it. The neighbor girl joyously insisted on pulling Kaia around in the wagon.

I had this image watching them as she pulled Kaia in the wagon down the sidewalk. I imagined them older, in high school. The girl is just over 3 years older than Kaia. I thought - maybe when they are older, in school - she will look out for Kaia. Maybe if she sees her in the hall or at lunch she will say hi to Kaia. Maybe she will set an example for how the other kids should treat people that are different. Maybe she will be a guardian angel of sorts for Kaia. I know that’s a lot to put on a 5 year old girl. But I’ve got my dreams.

What I love about this girl is that she never once has asked what happened to Kaia’s lip/nose. She has a bit of a speech issue – she stutters – so maybe she understands what it’s like to be different and sees past that. Or maybe her parents already have had the talk with her and explained things and told her not to ask. I don’t care. I just love it that she loves my girl.

It was so cute how she would copy how I interacted with Kaia. We’ve been teaching Kaia how to climb into her wagon herself (it’s pretty difficult b/c it has the high wooden sides attached to the metal wagon base) and the other girl took it upon herself to teach Kaia as well. She would repeat almost verbatim the things I and Paul said to Kaia. What power we adults have, for better or worse, on children. I forget that sometimes. It surprised me to see that we have that over other children, not just our own.

All in all, it was a pretty good weekend.

Alternative therapy

Last Friday I took Kaia to an alternative type of therapy. Another mom I know that has a kid with cerebral palsy was frustrated with the progress her son was making in traditional therapy and with the lack of creativity of the therapists. She researched other types of therapies and found one called the Anat Baniel Method, based on the work of Feldenkrais. More info at: http://www.anatbanielmethod.com/help-children-overview.htm There were no practitioners of this particular type of therapy in our city. The closest was in Chicago, a three hour drive away. So, desperate to try anything that might help her son, she drove him up to Chicago to do this alternative therapy. Thankfully her insurance is covering the cost (or at least part of it) of the therapy.

Being part of a group of moms with kids with movement issues, she and the practitioner decided to gauge interest by having the practitioner come to Indianapolis for a weekend and offer a free trial session to kids here. I jumped at the chance to give Kaia the opportunity to experience this alternative therapy free here in town.

I have to admit I was skeptical. Some of the tenets of the therapy I agree with partly, in principle. For instance, they advise no orthotics. We actually waited quite a while before finally getting orthotics for Kaia. My concern was that she would never strengthen her ankles, which pronate, if they were fixed in orthotics. I finally relented to the idea that if we give her that support, she would have an opportunity to strengthen the other muscles needed for walking by being able to have the stability to try it. The Anat Baniel practitioner (she’s not a licensed OT or PT) also advised us not to assist Kaia walking by holding one of her hands. The idea as I understand it (which may be completely wrong) is not to force a child to be more upright than they are ready to be. The woman, after having me remove Kaia’s shoes and orthotics, spent most of the time touching/stimulating Kaia’s feet in a sitting position. She also touched her back. She didn’t mind Kaia being in, and didn’t force her out of, a w-sit position.

I still don’t really completely understand the theory behind it. Perhaps she didn’t do a very good job explaining it or maybe I just didn’t listen well. The other mom’s kid and Kaia have the same physical therapist. This PT was there observing for the session (The other mom had scheduled the PT to be there to watch her son’s session and the PT stayed for Kaia’s upon my request). I could tell she was trying very hard to be respectful by asking questions regarding the how/why of what the woman was doing. I didn’t think the practitioner provided an adequate explanation to her either. There definitely was some tension in the air. It pretty much is the complete opposite of everything that we’ve been told by traditional therapy to do with Kaia.

Kaia is tactilely defensive and did an admirable job putting up with all the touching. But fairly quickly she started to push the woman away and started signing “all done” and “bye bye” to her. I felt a little guilty forcing Kaia to submit to this therapy and yet I force her to do things that she doesn’t necessarily want to do all the time because it’s good for her – changing her diaper, brushing her teeth, etc. Inwardly, I was elated to see Kaia communicating her desires, even if I couldn’t fulfill her request. Thankfully the woman discovered some quirky things Kaia likes. Kaia warmed up to her so much that by the end she was trying to kiss the practitioner.

Anyway, the upshot is that if the practitioner generates enough interest, we could bring Kaia for sessions with her when she comes to town for a cost of $95 per hour. It’s actually unusual for insurance to cover it. I told her I’d check with our insurance to see if they would cover it because otherwise we really couldn’t afford it.

That same evening we brought Kaia to the monthly parents night out program. When we picked her up, Paul took her by the hand to assist her to walk down the hall. Wouldn’t you know it, she pulled her hand away and walked - on her own - the entire length of the hallway. It was at least 25 feet. The only reason she stopped was because the hall ended. We’ve had these breakthroughs before but she will usually revert to crawling almost immediately. So I didn’t hold my breath that it would remain consistent. She definitely has been on the cusp of walking for a couple months now, though.

Saturday we took her swimming in the morning and shopping in the evening. She was off and on with the walking. On Sunday, we put her therapy shorts on her. They’re called hip helpers, are bright red spandex, and she looks like a little super hero wearing them. She took off on Sunday! She walked at least 50 feet continuously and even made a 45 degree turn on her own in the middle of that stretch. She’s kept at it; alternating between doing really well or not being as motivated when she’s tired and/or hungry.

But she really can and is walking! She still falls a lot and walks with a wide base of support (the shorts do help with that), but she can do it! She can also climb up on to the couch by herself now! (That started late last week). Even after coming down with a cold Monday morning, which has thrown her balance off in the past (one of her therapists attributed that to increased fluid in the ear, which is the center of balance), she has continued to persevere in attempting to walk this week.

She also made the “help” sign to me, independently, without any prompting, today. Holy cow, was I surprised. Then she did it again a few more times. She also has said “bubbles” and “more” a couple times this week. She just loves those bubbles.

So what do you all think? Do you think she was just ready, no matter what? Do you think it was the one alternative therapy session? Do you think it was the hippotherapy (she’s gone 3 times now)? Maybe it’s the confluence of it all.

I wish I knew, but in the end I guess it doesn’t really matter. I accepted long ago that all we can do is maximize Kaia’s environment and provide opportunities for her to progress. She’s going to do it in her own time. I’m constantly amazed by her perseverance and her abilities in spite of the incredible challenges that she faces.