Monday, July 19, 2010

The Lowdown on CE

So here we are!

Eden is attending the Conductive Learning Center in Grand Rapids, Michigan. CLC is on the other side of the state for us...about a 2 hour drive. I had heard about the program years ago and kind of wrote it off as much too expensive and inconvenient to really be a possibility. I made a lot of excuses about why it was not an option, and I think they were valid excuses. I did not think that Eden would have been able to handle the stress and work load when she was younger, and I was afraid that putting too much pressure on her would have a negative impact on her body as well as on her spirit. I also worried that I would not be able to handle being separated from Holland and John for such a long period of time, and couldn't quite get to a place where I could justify the time and money commitment without knowing how much (if any) progress Eden would make and if it would be a fair trade off for how it would impact my family. It really just didn't seem fair to anyone at the time, so I never pursued it.

Then, several months ago a parent on a yahoo group that I belong to mentioned that she had a walker to give away. It was a walker that I thought might work for Eden in the long term, and she lives in my area, so I scheduled a date to pick it up at her home. I talked to this mom on the phone, then had a long visit at her house. Her 7-year-old daughter attended a 4-week session at CLC last October and she raved about how great the program was and really encouraged me to check it out. I started researching it again and became really motivated to learn more.

This time things really started to fall into place and I thought of it as a very real possibility. I have the summer off work, so I wouldn't have to take any time off. John's employer agreed to let him work remotely so he could come too. An online acquaintance offered up some great suggestions for summer camp options for Holland. The director of the program put us in touch with another family who offered to let us rent their house for the summer. We made a visit to the program for an assessment, and we were impressed by what we saw. Eden has made tons of progress over the past years in terms of her cognitive and language development. So much so, that I was sure she would be motivated and would want to do it. She is also at a great place physically, where I felt like she could handle the work load without being completely exhausted and losing too much weight. Plus, developmentally she is at a point where she is able to crawl and get around, and is really wanting to pull up to kneeling and bear more weight on her legs for walking.

So with much discussion, and a great deal of courage, we decided to go for it.

We are now two weeks in to a four week summer camp session. She is attending Monday through Friday from 9am till 2pm. And we are loving it. From my perspective, as a parent and not an expert in conductive learning, the gist of the program seems to be that by doing certain movements over and over, kids with CP can gain functional skills. A lot of the activities they do are similar to what Eden has been working on for years with her physical therapist. But, rather than working on these skills for 1-3 hours per week, she is working 5 days a week, 5 hours a day. They put a lot of focus on getting her to take responsibility for her own movement, to pay attention to her body and what she is trying to do. They have some unique equipment (wooden plinths, ladder back chairs, parallel bars and PVC pipes, etc) that they use to assist her in gaining certain skills. They sing songs, read stories, and incorporate a theme into each session (the theme for Eden's camp is Pirates), but everything they do is actively targeted at improving each child's physical functional abilities and maximizing their potential.

It's pretty strenuous. Every child is expected to do the MOST that they can possibly do. I got snapped at today because I picked Eden up to take her to the potty. She is supposed to do as MUCH of the work as possible in getting herself to the potty...which means that they bring the potty to her and she has to stand up to help get her pants down then help lower herself independently to the potty. When she is finished she has to pull herself up to standing, to help pull her pants up, and walk back to where she needs to be and get herself into the right position to continue working with the class. Whew.

I was not expecting any miracles. I knew that a four-week Conductive Education summer camp was not going to make Eden walk. I must admit that deep down in the recesses of my being, I kinda wished it, but the ever-present logical part of my brain was always there to give me a reality-check. I am a little bit cursed with an overabundance of logic and skepticism. It's one of my many flaws.

So we went into it hoping that it would be a nice change of scenery, would give us some good ideas on how to change things up a bit, and would hopefully be a great adventure. And that is exactly what it is turning out to be.

I am learning a lot that I will definitely be incorporating into our everyday life. Eden is making really good progress, and I have seen some amazing results from her hard work and persistence. She is not walking. She is not really even standing and pushing a walker as well as I had hoped she would at this point. during the line program she was able to keep her legs straight while lying on her back while she swung a ball up and down and from right to left with her arms. It brought tears to my eyes (I actually wanted to bawl but there were other people there). She couldn't do that last week. And yesterday her stepping out to meet me in the hall was the best it has been. And one of her conductors told me that she stood really well at the bar wall and was able to stay standing through an entire song! And when I went in to meet the class for swimming on Monday she was sitting by herself on the floor tugging mercilessly on the second sleeve of her shirt AND SHE GOT IT OFF ALL BY HERSELF! Then she put her bathing suit top on with very little help and was so, so proud of herself.

So yes, she is making progress. We have had very minimal tears, and she looks forward to going every day. She really enjoys watching the other kids and I think she really feels like she is part of the group. The program is really well run and I have felt welcomed by the staff and other parents.

There are other things that have fallen into place to make the whole experience even better. The house we are staying in is perfect and close to everything. Holland is thoroughly enjoying her own summer camps (last week she did gymnastics camp and this week Little Diggers at the botanical gardens) We are all enjoying a little break from the monotony of everyday life, and it is shaping up to be quite fun.

Now I just have to figure out how we can get back before next summer. I'm thinking February.


Anne said...

It sounds like a wonderful program. I am glad it has been a positive experience!

Becki said...

Billie, John & Girls,

Congratulations on being halfway through with the Conductive Education summer camp! For Johnny (this is his 11th summer camp!) he can't wait for Saturday mornings to be able to sleep in! It sounds from your latest blog entry, that you are enjoying CLC and I am so glad. Glad that you feel welcome, but mostly glad that you are starting to see the benefits of this wonderful program first hand! Way to go!
Becki Agar (aka: Johnny's proud Mom)

BusyLizzyMom said...

I am so glad things are going well. I had enrolled Elizabeth in a brief CE camp and I was impressed by how they work on so many functional goals for independence. The bonus of a daily camp is great to give her a 'boost' before she starts school in the fall.
That is so great that Eden is taking off her shirt, it is a hit or miss thing here and we have worked so long at it.
These therapy spurts are addictive because you can see so much progress, it just is a really expensive habit.

Katy said...

That sounds so great! Like you, I still think that Charlie's body would take a beating if we did an intensive program, so I am putting things like that off for a little bit longer.

I am really thrilled to hear about all the independent stuff that they are teaching her. To me, that kind of thing will be the difference in the end. I know, as parents, we put a lot of emphasis on walking, but in reality, walking is not imperative to independence. I know you know that--I just need to remind myself sometimes.

Anonymous said...

I was hoping you would have a CE update posted. I was wondering how it was going. Glad you are all enjoying it!


The Buckley Family said...

I'm so glad the camp is going so well for you! Definitely something to keep in my back pocket for now but I have a feeling it would be good for Annabel in a couple of years. I will probably be contacting you. : )

Daphne said...

Hi~ I'm from Hong Kong. I found this blog on the web. Have been viewing some of your videos uploaded a few years ago. Saw how beautiful babies grow into beautiful girls :) Holland & Eden truely have a very loving family (including the dog!). Best wishes to your CE camp. I hope Eden will discover more and more of her own abilities, in the camp and in the future :)

Janet "Grammy" Harrold said...

Thank you for sharing your CE experience. My granddaughter Hailey is 3 years old and has Athetoid C.P. My son and daughter in law are seriously considering it and I think that blog posts like this help to seal the deal. Eden seems like a very determined little girl.I know she will continue to do well. I am going to add you to my blogroll. Thanks again.

k said...

Hello! I just found your blog and I also have a micropreemie (she's 10 months actual, 6 months adjusted) who just came home in June. I live in the same area of the state as the camp and didn't even know it existed! So glad you found it.

Unknown said...

Hi there,

Re-reading this post because we are considering CE this summer as part of Hannah's post SDR recovery plan. It would be daunting to move our whole "operation" (3 kids) across the country but for a short stint and if we can find housing, it might be do-able. Sounds like you had a good experience, so much so that you're going back again this summer. Who knows, if we can get our act together, maybe we'll see you there!

CP and Me said...

Hey Billie,

I just commented but was logged in under my work acct (lacnadmin) so am just sending this comment so you know where it came from!


Billie said...

I hope you do! I would love for our families to meet!