Wednesday, March 24, 2010

Half Full

Eden's assessment for the conductive education program in Grand Rapids went really well and we have been accepted into their summer program. The program director evaluated Eden and seemed to be extremely impressed by our little gal. She was effusive in her compliments regarding Eden's cuteness and reiterated many times how "extremely bright" she is...which of course, made my mom heart happy. She seemed very optimistic about Eden being the perfect candidate for their program and seemed confident that she would make great strides in meeting some of her physical milestones over the 4 weeks that we will be there. Our hope is that she will make progress with standing and bearing weight on her legs, and perhaps start working toward a goal of pushing a regular walker with better form. We also hoping that Eden will learn to take more responsibility for her own body and start helping us with more of her basic self-care, such as transfers between equipment and assisting with dressing and feeding.

The program director said that this program was actually designed specifically for kids like Eden. She had some interesting comments about Eden's type of CP. Eden was initially diagnosed with spastic diplegia (high tone in lower extremities). Eventually that diagnosis was changed to spastic quadriplegia (high tone affecting all four limbs). We know that Eden is not "typical" for a child with spastic quad CP, as her spasticity (high tone) is actually very mild and fluctuates, whereas her trunk tone is quite low (or floppy...called hypotonia). So this person, who has worked with many, many kids with CP, thinks Eden's CP looks more like dystonia or athetoid CP with fluctuating tone. In the end, it doesn't matter so much to me anymore what we call it. I do however, think that a lot of what she said makes sense in terms of Eden's difficulties being much more related to involuntary movements and motor planning issues rather than just to high or low muscle tone. She says that we really need to focus now on teaching Eden to slow down, pay attention to her body, and pull it all together. I think this is spot on.

Eden is excited about the program and I think she is really going to enjoy it. I am not just looking forward to her making some gains in her gross motor skills. I am also really looking forward to her being able to meet and make friends with some other child who have physical challenges. We are lucky to have a few friends with CP in our community, and this has been invaluable in helping us teach Eden about disability and what it means for her and others. However, Eden spends the vast majority of her life surrounded by adults and children who do things easily and don't face the same physical challenges that she does. I think it will be a great experience for her to see and understand that she is not not the only one always needing help. She is not alone.

The Conductive Learning Center is a little over 2 hours from our house, so we will be packing up and living at either Ronald McDonald House (most likely option due to cost) or a hotel suite (more comfortable but pricier) for 4 weeks in July-August. John is looking into working remotely, and the plan is that he will come with us and work for at least part of the time. I am investigating some options for a summer camp for Holland at the same time, and one of my blog readers (whose blog I also read regularly) has given me some really great suggestions that I think Holland will love...although she has already made it clear that she wants to do conductive ed with Eden!

There are, of course, some downsides. One is certainly the cost. Between the cost of the program, living expenses, travel expenses, and a summer option for Holland we are looking at several thousand dollars. We will use our tax return, as well as some of our savings to fund this venture, and we will have to forgo any other summer vacations, but I am hopeful that it will be worth it. It will be an adventure! Another downside is the fact that Eden will get more benefit from the program if we do it more than once a year. If we have great success this summer and decide we want to pursue it again we will definitely have to look into some fundraising options.

As an aside, in Hungary (where the program was developed) this program is FREE. In Germany it is fully funded through insurance. In the US...nothing. I guess that Medicaid used to give a $500 stipend to help families with the cost, but that ended this year due to budget cuts. So instead, we pay more for our Medicaid and get less (diapers are no longer covered in MI as well). I'll just stop there. Don't even get me started. Pfffft.

In other news...we had a blast in Columbus and thought They Might Be Giants totally rocked. The girls were giddy with excitement when we got to the hotel, and they literally screamed and squealed when we pulled into the parking lot. The hotel was really nice and we had a super-fun time swimming in the pool. My kids are literally fish. Except that while they may think they can swim, they really can't! They were skinny little balls of energy and joy the whole time we were at the pool and they had, in their words, "a total blast."

The downside (geez, there always is one, isn't there?), is that we did not sit together. We were clueless about the time change and after a confusing morning we (luckily) finally figured it out and arrived at the show with less than a half hour to spare. Parking was a nightmare and my stress level was through the roof by the time we got to the venue. I asked at the ticket counter and was informed that the show was completely sold out, even in the accessible area. And yes, it gets worse.

John sat with Eden in accessible seating. There were 6 seats. The other 4 seats were occupied by a family of 4. And no one in their party had a disability/used a wheelchair or walker/or appeared in any way to need wheelchair accessible seating. Big Sigh. Now John, to his credit, is a much more laid back guy than I am. It really didn't bother him and he just let it roll off his back. If I had been down there I most certainly would have said something...politely and nonconfrontationally for sure, but I would have made it happen, even if just to ask if they would hold one of their small children in their lap so I could have one seat in which to hold Holland in my lap. It wouldn't have been a big deal. But...John didn't see it as necessary and just had a good time enjoying the show with Eden.

I made the most of it in the mezzanine with Holland. Everyone had fun. The girls loved it and didn't seem to mind the arrangement at all. I was the only one with an issue so I made a big effort not to get all stressed out (but I was) and to let myself relax and go with the flow. During the encore I noticed the family seated in (what should have been) our accessible seats had left so Holl and I rushed down to catch the last song with Dad and E.

Then...on the way out, as we were TRYING to make our way back to our very crappy parking location, Eden ran Holland over with her powerchair, Holland fell and hit the floor with her glasses which embedded into the side of her face, dangerously close to the eye that she was about to have surgery on. I should mention that they were both mesmerized by the 3 escalators in the atrium and were staring at them as we passed by. So neither was paying any attention to what they were doing...Holland aimlessly walked directly into Eden's wheel as Eden aimlessly drove her wheelchair. I saw it happening at the exact moment that it was too late to do anything about it. So the whole thing ended with me sitting on the floor of the venue lobby with a sobbing Holland in my arms assessing the damage. She ended up with a nice bruise and bloody puncture wound on her left temple. Fortunately it is healing nicely.

This whole experience was a nice, fresh dose of reality for me, realizing that as much as I sometimes like to think I DO, I don't and CAN'T always control everything and I don't always have it all together. There are some battles that are worth fighting, and some that aren't. Sometimes you have to stop worrying about changing the world, and instead focus on what is most important...enjoying the experience for what it is and being in the moment with your kids.

These amazing kids have really taught me so much. It is much too easy to get caught up in the "bad stuff". I could easily choose to remember the negatives of this whole experience. We were late. Parking sucked. We didn't get to sit together. The people sitting is our seats didn't even need accessible seating!! Nobody seemed to realize this was unacceptable! My daughter ran over her sister with her WHEELCHAIR. My daughter needs a wheelchair...

But if you were to ask Holland and Eden about the show...they would tell you it was GREAT! They would say that their favorite part was the shooting star song when the disco ball made it look like there were stars everywhere! Or they would tell you about the avatar puppets that were SO HILARIOUS! Or about how many times the CONFETTI sprayed everywhere! They would tell you that they got to see John and John in real life and it was SO COOL! And they played Mom's favorite 12 Crazy Monkeys song! And Dad's favorite High 5! Holland danced in the aisle. Eden sang along and reached as high as she could to catch the confetti. It was great. It really was.

And that's what I am going to choose to remember.

I am so lucky.

My kids are constantly reminding me that the glass is half full.


Anonymous said...

I'm a lurker but I love reading about your girls. I just wanted to say even though no one appeared to need accessible seating, it doesn't mean they didn't need it. Some disabilities are invisible and it's never good to assume.

Billie said...

I understand that. But this was not "disability" seating. It was wheelchair accessible seating. There is a difference.

Katy said...

I found myself with similar issues in Disney World. I wanted to kick the butt of this family that went through the disbilitiy entrance because it was their daughter's birthday. Ugh! Or people who would just walk up the disability down ramp because it was less crowded. I had to remind myself a lot that getting all worked up wasn't going to improve my vacation.

The Buckley Family said...

Glad you had a good time overall (even if it was clouded). I'm excited for you guys for Eden's summer camp. You will definitely have to fill me in on it, it potentially sounds like a great opportunity for Annabel!

Alice said...

Ooo its annoying me too - I would definitely have done my best to get one of those seats - my husband is like yours and sometimes I so wish I could be like him and let everything wash over me. Glad the girls had a great time

Denise said...

I have to request wheelchair accessible seating when I attend any big function. I have MS and never know if I will be in a "flare" or not. I am bothered by the fact that you were denied 4 seats and they were apparently given 4 seats.

Kat said...

I'm a Hungarian who lives in Slovakia. Budapest where the Pető Institute is situated is about 2 and a half hours by train from my town. I've never done CE in Budapest. It has never been recommended to us back in the late 70's and early 80's when I was Eden's age, who knows why...

I on the other hand wish Dr. Nuzzo's PERCS surgery was available here and Dr. Park's SDR and reverse walkers from ebay and...

Anyway, good luck with CE!!!

The girls are so cute as always!!!

spastic diplegia

spastic diplegia

GreenGirl said...

Just to compare cost you may want to consider a few other programs.. We have done TEAM REHAB in Decorah Iowa and have found that the rates are better than what we pay for outpatient PT. That being said we were also able to get our insurance to cover the cost.
Your girls are great!

Kendra Lynn said...

Kids really do remind us of that, don't they? Even when everything around us is screaming, "Live stinks!", our kids are smiling and livin' it up. :) Hug the girls for you guys.


BusyLizzyMom said...

That is pretty sad that you were unable to sit as a family and let the girls enjoy it together. The girls memory is the most important and it sounds like they had a great time. You would not want them with a memory of Mommy yelling at someone because of seating (which would probably happen if it was my kids). Those kinds of moments you are not able to enjoy the moment and it sucks.
Good to hear Eden got in the CE program, we did a March Break camp a couple of years ago. I really like that it looks at the whole child and increasing their independance, it does not just focus on PT alone. The travel was too far on a daily basis so we stoppped. We did 3 week run of Medek out of town and I have to say Elizabeth and I (Daddy stayed home) really had a great time together. It was nice to not have to worry about the house etc as we were staying an a hotel suite, I loved having our bed made each day. Financially it drained us but I do not reget it one bit. I can understand why Holland can't attend but it is a shame that they cannot be together. We still do not have the offical diagnosis for Elizabeth but I do see a lot dystonia in her movements, for example if she is doing something with her hands trying to get her feet to bend for her AFO's is impossible as she is stiff as a board but her underlying tone is very low. I have read lots and lots on dystonia and it says it becomes more apparant as they get older which I see (wemove is a great website).

Anonymous said...

Oh, dear.
When my daugther started school I noticed there was an American woman who took her girl there (I live in Spain). I am Spanish but have lived in the US and have a strong affinity with Americans, so I though she would be someone I could approach and maybe make friends with in this new school.

Then I realised that the car that was always parked in the disabled spot at school was hers. Another day, I found her in the supermarket. She had left her two children alone in the car while she shopped. And, you guessed it! She had parked in the disabled spot. I asked, very politely, but certainly looking for confrontation, who in her family had a disability and she said that no one, but this way it was faster for her to go in and out of the supermarket. She added she did not feel fully confortable leaving her kids alone there.

I'm spare you my answer which makes it imposible for us to ever be friends, of course. On the plus side, she's stopped parking in the disabled spot at school, now it's a family form South America who park there.

Esther and Brian said...

Hi...I'm from Hungary originally (raising my twins bilingual, too). I read your blog and admire your kids very much. They are precious..

The Peto Institute is actually very close to my parent's house in Budapest and we always see many many foreigners taking their kids there for rehab and other services. I think that it is world-renown for sure...

Best of luck this summer!!!

Bethany said...

de-lurking to tell a short story...

My family just got back from a delightful 70th birthday party for a good friend of ours who happens to live with CP.

I could tell you that he walks awkwardly and makes himself understood with difficulty. That his hands shake when he tries to handle small objects. I could tell you that he has faced frustration and prejudice during his 7 decades in his problematic body.

Or I could tell you that this amazing man has volunteered at our local library and in our church for many, many years. That he claps and dances to any music (especially his favorite, Elvis! On a recent visit to his apartment, my girls treated him like a rock star, dancing with him in turn and laughing uproariously.) That my heart melts when I see my daughters walking in pace with him, watching his lips carefully to hear about his week, or playing a fierce game of Sorry at our church's retreat. That the day he put on "Love me Tender," held out his arms to my oldest, and painstakingly asked, "May I have this dance?" will forever be one of my favorite memories.

Most of all, I would like to tell you that the love he has for others, especially kids, shines unmistakably through him, completely eclipsing his disabilities.

Please don't think I'm trying to make any sort of statement about your girls or their (or your) past journey and future lives. I don't think this story will make the hard days better or in any way reduce the struggles you all face. Mostly, I just felt compelled to share about this man because of the way you recognize and work to reduce your daughters' limitations, but never stop rejoicing in the unique, delightful human beings they are, despite...because of...beyond their disabilities.