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If You're Curious About My Special Needs Daughter, Please Ask Questions

Updated on September 23, 2009
Cari Jean profile image

Cari Jean is a freelance writer and author. Her inspiring memoir "Having Faith" is available on Amazon. She resides in North Dakota.

My daughter, Faith, alongside the Missouri River.
My daughter, Faith, alongside the Missouri River.

My five-year-old has cerebral palsy. She is in a wheelchair and wears orthotics on her feet and splints on her hands. She is also fed enterally through a feeding tube. She is verbal though and she likes to laugh and smile, which are the most important things to me. I know my daughter - I know how much joy and love she has for others. Still, there are those who do not know how to relate to her. There are those who do not understand her disability, nor probably do they want to understand. It is easier for people to just ignore her and those who don't ignore her simply stare. This is the worst for me, the staring.

When Faith is out shopping with me, she likes to say hi to people. Sometimes people say hi back and sometimes they go the extra mile and come over and talk to her. This makes Faith's day! One time we were at a certain store near our home and an elderly gentlemen saw Faith and asked if he could have his granddaughter come and say hi to her. The little girl bounded over to Faith and asked how old she was and where she went to school. It was so sweet and so good the the man to do this. It brought tears to my eyes. I think it is important for people to help others know they do not have to be afraid of someone who is disabled.

Questions from Kindergarteners

Last week I was able to accompany my daughter on a class field trip to the Pumpkin Patch. While the other kids climbed and haystacks and went down the slides I walked Faith around the patch to look at all of the pumpkins. After about an hour, a few girls came up and asked if they could push Faith. I was a little hesitant because they didn't look very strong and some of the terrain was pretty bumpy. They won me over with their eagerness, though. When the other kids saw the little girls pushing Faith they wanted a turn too. They were having so much fun and it was obvious that Faith was enjoying it too. It was wonderful to see the kids engage with Faith.

A little while later it was time for Faith's feeding. The kids were a bit wide-eyed as they saw me connect a feeding tube to the button on the outside of Faith's tummy and set the pump's rate and dosage. They began asking all sorts of questions. "What are you doing? Does that hurt her? What does that stuff taste like? How does that get into her stomach?"

I tried my best to answer their questions in a way they could understand. The more they understood, the more they wanted to know and the questions continued. "How does she get dressed if she can't stand up? How does she sleep? How does she take a bath?" and on and on.

That day was a huge blessing for me, as well as my daughter.

Please Ask

I wish more people could be like these little kindergartners. As I mentioned above, the hardest thing for me to deal with is people who stare at my sweet little girl. Kids can be the worst because they are so blatant about it. I find myself wishing their parents would teach them some manners. But then again, the parents probably do the same. Sometimes I feel like yelling, "Stare Stare like a bear." I do refrain myself whether out of shyness or politeness, I'm not sure. If people are so curious, why don't they just come over and ask?

It's easy for me to say this now. But I do know that before I had my daughter, I probably wouldn't have. But now that I know differently, I know that it is best just to ask.

If you are ever in a situation where you find yourself near a special needs child or even an adult, I encourage you to smile and say hello. It's almost guaranteed you will make their day. And if you have any questions, don't be afraid to ask!

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    • profile image

      Carolyn 

      21 months ago

      I have a cousin named Ashley who gets special attention at restaurants and I love it and I have 2 things in common and tell me if you think I have a great idea but I want to make a water park/amusement park and have it be therapeutic for the disabled people who are like Ashley and then some parts of the rides we anand out wishing pearls instead of silver dollar city we would call it oyster dollar city because if you've been given an OK by Ariel then all systems go

    • profile image

      karen ciaranca 

      2 years ago

      Great article !!! I took care of my aunt who had C/P and MR for 20 yrs...how I wish these things were around when she was younger !! I also understand the stares. ...my line was...that a picture. ..it will last longer !!! I also found that if you just explain to kids they seem to understanduch better....my aunt was non vocal so she yelled alot but that was her way of communicating with us...though I did teach her some sign language so she could tell me want she wanted.....just a few of her favorite things....pizza,her radio and her favorite. ...SANTA !!!!my kids grew up with her and even my grandson and I know it made them better people....more caring and had compassion towards all people !! Thank you for writing this article. ...it really hit home....xoxox

    • Cari Jean profile imageAUTHOR

      Cari Jean 

      6 years ago from Bismarck, ND

      Shar - Um, excuse me? This comment is not very appropriate for this article. This article is about how I, as the mother of a special needs child has to deal with the curiosity of other kids when they are around my child. My daughter did not have genetic issues she was born early and as a result of lack of oxygen to her brain she had some damaged tissues which caused her CP. And by the way, there are no pics of embryos on this article nor am I a doctor who is trying to lecture.

    • profile image

      shar 

      6 years ago

      people not everyone wants to keep a fetus that could have serious genetic issues . don't blasphamize women who choose not to go thru a pregnancy of she decides terminate. we don't need pictures of embryos or or a lecture from a doctor

    • Cari Jean profile imageAUTHOR

      Cari Jean 

      8 years ago from Bismarck, ND

      Lita - I'm so sorry to hear about your husband. My husband works for a company that carries home medical supplies and runs into a lot of adults who need to be tube fed. I pray that someday our daughter will be able to get enough calories and nutrition through eating food but we have a long way to go.

      Thanks you so much for your kind words about my daughter. We are truly blessed.

    • Lita C. Malicdem profile image

      Lita C. Malicdem 

      8 years ago from Philippines

      I tube-fed my husband at home for more than one month. But he died young (age 48)just the same because of terminal cancer. Faith is very fortunate because her condition permits her to live the way she does- with smile on her face. And she is even luckiest to have a doting mother like you. You are both blessed by God's endless love- in one very special way.

    • Cari Jean profile imageAUTHOR

      Cari Jean 

      8 years ago from Bismarck, ND

      Hi chanice - I'm sorry but I really don't know the answer to your question. I have not had the experience of trying to breastfeed a baby with down syndrome. I know my baby was born early and I had a tough time breastfeeding her and finally I gave in and bottle fed her. I'm sure you can find the answer to your question somewhere on HubPages or elsewhere on the Internet.

    • jamexican profile image

      jamexican 

      8 years ago from oceanside,ca

      hi my name is chanice.i recently found out i was pregnant,and that my child might have down syndrome.i did tets but i dont wanna say she is 100% free of any diabilities.i have a question tho...can u breast feed a down syndrome baby or will it be harder?

    • Cari Jean profile imageAUTHOR

      Cari Jean 

      8 years ago from Bismarck, ND

      elayne001 - I pray all is well for both of your granddaughters. It can be quite the adustment to have a special needs family member but it can also be a time of incredible growth. Blessings to you and all of your family.

    • elayne001 profile image

      Elayne 

      8 years ago from Rocky Mountains

      My newest granddaughter has spinabifida and will never walk. Her first birthday was yesterday and I get to go see her tomorrow. They live far away so I feel so happy to get to see her again. Her older sister also has health issues. You have had to deal with so much and I am sure you have grown stronger through it all. I will be following you too. Best wishes.

    • Cari Jean profile imageAUTHOR

      Cari Jean 

      8 years ago from Bismarck, ND

      rmcrayne - Yes, I can definately tell which adults have had experience with kids w/ special needs. Thanks for reading!

    • rmcrayne profile image

      rmcrayne 

      8 years ago from San Antonio Texas

      What a great hub. Thank you for sharing Faith’s story. I’ve been on many pediatric interdisciplinary teams. Parents sometimes say they can always tell immediately which team members are the therapists because we always speak directly to their child, often before addressing the parents.

    • Cari Jean profile imageAUTHOR

      Cari Jean 

      8 years ago from Bismarck, ND

      breakfastpop - Thanks for your comment. I try to be a loving mother - at times I do not feel so wise though!

    • Cari Jean profile imageAUTHOR

      Cari Jean 

      8 years ago from Bismarck, ND

      A Texan - yes, Faith is a very happy little girl. Thanks for your comment.

    • breakfastpop profile image

      breakfastpop 

      8 years ago

      Thank you. What a wonderful hub. It brought tears to my eyes. Your daughter is very lucky to have such a wise and loving mother.

    • profile image

      A Texan 

      8 years ago

      Great Hub, Faith looks like a happy little girl and she has a great mom!

    • Cari Jean profile imageAUTHOR

      Cari Jean 

      8 years ago from Bismarck, ND

      I try to smile too and sometimes say hi. Thank you so much for your comment.

    • ericabrobertson19 profile image

      ericabrobertson19 

      8 years ago

      awesome hub, thank you. I spent 5 years working with families who had children with disabilities so I am pretty good about smiling, etc. sometimes I wonder if the parent thinks Im smiling out of pity and I hope not. I want to tell them "i know what its like!" Im with you on your side! what a great article.

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