Pennsylvania CdLS Gathering

Ben at CdLS gathering 

This weekend we attended our first ever CdLS family gathering!

On Friday I rearranged my schedule to work just a half-day, thinking that we would be ready to leave as soon as Isaac got home from school at 3 pm.  I should have known better – we are not the world’s most organized family, so we actually set out closer to 5:00 pm.  All three boys tolerated the car ride amazingly well.  The older two are quiet as long as their Gameboys are charged, and Ben slept most of the way there. 

The family gathering took place the next day at the Center for Creative Play in Pittsburgh, PA.  What a neat place that was!  I wish we had something like that in our little town.  We were surprised at how many people were there.  There were about 14 individuals with CdLS (and I think Ben was the youngest one there; the oldest person with CdLS was 28 years old), and lots of friends and family.  We met some truly wonderful families and parents, and enjoyed meeting all the kids.  It was surreal seeing all these kids whom we’ve never met before who look so much like Ben.  (BTW: I’m not posting any of their photos here because I didn’t ask their parents’ permission to do so.)

Isaac and Jonny castle 

Mark spent most of the meeting time out in the play area with the boys, while I stayed and listened to the speakers.  Ben really loved this wooden activity center.  (I wonder where we can buy one like it.)  Ben enjoyed being held by lots of different people, and he was quiet and content for the most part.

Ben at CdLS gathering 2

The food was good.  They even had our favorite pizza with basil and tomato!  And it was nice to see all of these kids with CdLS who were eating by mouth!  🙂

Eating

Truthfully, before we went to the family gathering, both Mark and I approached this weekend with some trepidation.  We weren’t sure how we would handle seeing some of the older kids and adults with CdLS, and we worried that it would be too overwhelming.  For me, anyway it turned out not to be as scary as I expected (although Mark’s experience was a little different, so I won’t speak for him).  I have a sister with developmental disabilities who is now 24, and the older kids reminded me so much of her. 

I hope we get the opportunity to attend more meetings in the future.  Mom: you will have to come and bring Maryam too!  😉

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11 Responses to “Pennsylvania CdLS Gathering”

  1. Christine Says:

    It sounds like you all had a great weekend!!

  2. Tom Says:

    We’re thinking of doing our first Buddy Walk for Downs and are also just as nervous as you seemed to be. Glad you braved it and went.

  3. Karen Says:

    Christine: yes, it was a great weekend!
    Tom: we are glad we went too. Overall it was a very postive experience for me. About two months after Ben was born, there was a national CdLS meeting that took place just a few hours from our home, but we just weren’t emotionally ready to go then. I think we’re ready now. I hope that if you decide to go to the Buddy Walk, that it will be a positive experience for you all.

  4. Lisa Leonard Says:

    I am so glad it was a good weekend for you! I find that it can be so encouraging to connect iwth people who are a similar place, but overwhelming to try to figure out what the future holds. It reminds me to take each day as it comes and let life be a process. I hope we can meet up one of these days. Maybe at a national conference?!

  5. Mom/grandma Says:

    Glad you were able to make the trip. Perhaps we may be making the next CdLS garthering with you all. Who knows?

  6. Sonia Says:

    It seems it was a very positive experience, I’m so glad. I agree with Lisa that taking one day at a time is key in keeping sanity intact. 😀
    PS I also wanted an activity center for Natalia, here are some of the ones I liked, we ended up buying the one made by Parent’s in Target (last link), she’s likes it enough to tolerate practice sitting, and I like the fact that as she advances in development she’ll find new activities (plus it was cheaper!)

    http://www.babyscholars.com/busboxtodact.html
    http://www.target.com/gp/detail.html/ref=br_1_9/601-4895709-0437733?ie=UTF8&frombrowse=1&asin=B000CSQ71G
    http://www.target.com/gp/detail.html/ref=br_1_10/601-4895709-0437733?ie=UTF8&frombrowse=1&asin=B000B6R36C

  7. Bennie Says:

    I’m so glad you went, Karen. We are already making plans to go to the PKS Kids national convention next June. How far away are you all form Philly?

    BTW, Happy Birthday!!!!

  8. Karen Says:

    Lisa and Sonia: you are right about taking one day at a time. So cliche but it’s all I can manange some days.
    Lisa: maybe we WILL get together at a national conference! That would be so cool. Mom, hopefully you will be here too.
    Sonia: thanks for the activity center links! I think we’ll be getting Ben one of those for Christmas. He’ll love it, and they look small enough to be portable.
    Bennie: we live about 3 hours from Philly. We can definitely meet up there next June if you’re there for a convention! We would all love to meet you guys in person.

  9. Rebecca Says:

    I can relate to those feelings about older children, but with another syndrome of course. It looks like your family had a wonderful time at the gathering.

    I also have a daughter who prefers not to eat much by mouth. She had a ng tube for awhile, but never anything else. She exists primarily on Pediasure. She will eat, but not in any real quantity. She still mashes her food she does eat her tongue, even though she has a mouthful of teeth.

    I’m hopeful that she will one day gain an appetite and eat with great vigor. 🙂

  10. Miss Behaving Says:

    When you mentioned previously that you were going I was really looking forward to hearing how it was for you.
    I am so glad it was a positive experience and that you are glad you went.
    Ben looks so engaged with that toy in the picture…..I see a purchase coming on.

  11. Petra Martinez Says:

    Hi, my name is Petra and I have a 6 yr old son with CdLS I need to know if there are any children with CdLS in my area or a support group that I can go to in my area. Please reply to my e-mail. Thank you.


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