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Monday, November 10, 2008

CdLS Sunday Blog Challenge

Here is our CdLS Blog Challenge Topic for today:

I have noticed that many people want to be helpful to families with a child with special needs, but don't know what to do. Sometimes we don't know what to ask for either.
Tell us about the most helpful things people have done for you. In retrospect, have you had someone trying to be helpful, but it ended up not being helpful at all?

One of the hardest things I've had to do over the last 4 1/2 years is to learn to ask for help from others. And fortunately, when I have gathered the courage to ask someone for help, they respond well and are eager to do whatever they can. I know a lot of our friends and family wonder what they can do to help Joey and I try to make it easier for them by letting them know what Joey's wants and needs are. I also try to make sure everyone is informed about CdLS so they feel more comfortable around Joey. I can feel a sense of relief as if people are saying "Oh good, she told me what I can do to help Joey and the family so now that's what I'm going to do. I don't have to wonder about it anymore." The most helpful thing to me is for people to accept Joey for who he is, and not to feel sorry for him or our family. He is such a blessing in our lives and I wouldn't change a thing about him. It is important for people to understand what a crucial part of our family he is. We learn from him every day, and he learns from us. I know our other children are especially benefiting from Joey ~ they are learning an important lesson of acceptance. The older boys' friends are very accepting of Joey and I believe it is because we are all open and honest about his condition. Our friends and family and other people in our community are not afraid of Joey or CdLS because of our awareness efforts and our open and honest attitude about everything.
I will share that one of the most helpful things for us right now is having someone come in and care for the girls while I take Joey to his therapy sessions 3 times a week. Our neighbors, Willard and Elsie, come to our home rain or shine and spend time with Emma, Abbie, and my nephew Cooper enabling me to take Joey to therapy without having to haul all of them along. What I would do without them I do not know. The kids love them and I know they are being well taken care of while I am with Joey. So if someone out there is struggling or needs some respite care, don't be afraid to ask. People are willing to help ~ they just need to know how. I also want to mention how helpful all of Joey's therapists are. He goes to a wonderful place called Wiggles & Giggles and he feels right at home. They have all taken him under their wings and are just as proud and excited about his progress as we are. We are grateful every day to have such a wonderful facility and caring staff right here in our own town. I am also thankful for all the help Joey receives through early intervention services. They have made his transition into preschool an easy one. He loves to go to school! We are also very grateful to Joey's primary care physician here in Columbus and all the wonderful doctors, nurses and other staff at Children's Hospital in Omaha. It is great to know there are so many caring people in this world and they all try to find the best avenue for Joey's care. And I can't forget to mention how helpful the CdLS Foundation and its staff are to us. Without them and all their helpful services and information, our road would be a lot more difficult to travel. So in retrospect, there is help out there for families caring for a child with special needs ~ all you have to do is ask. :o)

Here's Joey ~ peeking out his sister's bedroom window!


  1. Thanks for participating. First, I love the picture of Joey looking out the window.

    I'm so glad that you have good neighbors you can count on week after week. I guess I do need to learn to be more forward about asking for help sometimes.

    Thanks also for mentioning the Foundation. I should have thought of it because they have been extremely helpful to us.

    I have a question though. What do you mean by saying that you are very straightforward about Joey's condition with your older children's friends? Do you tell them the name of the syndrome and other things when you first meet them or do you send information to their classrooms or something like this?

    Thank you.

  2. I loved reading this! I havent experienced a whole lot yet so its nice to read things like this. Kaylee is only 8 months old and half her life has been in the hospital, if not more. I am very open about telling people about CdLS & I loved reading how you said his older brothers friends dont mind & that they know about the syndrome... I have been curious in my head how that would play out with Krista once she was older but this gives me ideas so thank you! & right now Kaylee still gets therapy at home which I am grateful for because we dont really have anyone that can watch her, we just moved to TN from FL and the only family we have here are my parents-in-law and they work and we havent really made friends here, well that dont work or that could watch Krista....

    Well I am just chattering away here, I just wanted to let you know I loved the post and it was nice reading your last one with the answered questions!

  3. Very true Rachelle...asking for help has always been one of the hardest things for me. Its something I still struggle with, but I'm getting a little better at it!

    Sounds like you have wonderful family, friends and neighbors and you've done such an awesome job raising awareness.

    Love the pic of Joey looking out the window...he is such a doll :-)

  4. Uhm....what would you ask for from your readers today? Barbara


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