Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

My Daughter Said Something Really Neat Today!


gf4life

Recommended Posts

gf4life Enthusiast

Today my 7yo daughter and I were talking about her new friend. Her friend has Cerebral Palsy and she uses a walker to help her get around. They are in a stretching class together at our local dance studio and my daughter says that her friend enjoys the class, but she falls down a lot. I explained to her that her friend has a disease that causes her muscles not to work too well. (That is about as detailed as I wanted to get into it with her without doing more research to explain it better...)

So she asked me, "Will she get better or will she always be like that". I told her that she will always have the disease, but there are doctors and scientists looking for ways to cure it. Then I said, it is sort of how you will never be able to eat gluten, unless they come up with a way of your body being able to tolerate it. So here is the kicker! She says to me, "I wouldn't want to eat gluten even if I could. The gluten free food tastes so much better!" And I swear she was serious! :D

She doesn't mind being different. We went to a party today for the summer reading club at our local library. My daughter was happy when they brought out the snacks. They had ice creams bars and cookies. She got to have 2 ice cream bars since she couldn't eat the cookies. It wasn't as if she were suffering or anything! ;) And at vacation bible school last week all the kids were jealous of my kids because mine got a full sized homemade gluten-free cupcake and the rest of the kids got a store bought mini cupcake.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice

Sounds like you're doing a fine job, mom!!!

Link to comment
Share on other sites
Lisa Mentor

ditto, what a wonderful joy you must be doing. :)

Link to comment
Share on other sites
2kids4me Contributor

and another "good job" to you.

You may want to rephrase the definition when she is older perhaps. Cerebral palsy is not a disease but it is brain damage to the motor area of the brain. People with Cerebral palsy often have normal intelligence but speech is altered (in severe damage, they are non verbal). The muscles are fine - they just dont get the right messages for co-ordinated movement.

It most often occurs at birth (hypoxia, umbilical cord being entrapped by the baby's shoulder, or wrapped around baby's neck). It can also occurs if the baby requires surgery in the neonatal period and 02 is compromised during the procerdure - heart surgery, closing a defect from spina bifida etc.. The motor area is the first one damaged when oxygen supply is compromised (this was how the neuro guy explained to my friend)

With young children, the way my friend explains it to kids (her son has CP) is:

His brain cant send alot of messages to his muscles so they kinda do whatever they want. But his eyes work great and so does his sense of humour and he loves to visit with other kids and hear about you (he is non verbal).

Link to comment
Share on other sites
Lisa Mentor
ditto, what a wonderful joy you must be doing. :)

I meant "job", but "joy" can work as well. :)

Link to comment
Share on other sites
tiffjake Enthusiast
Today my 7yo daughter and I were talking about her new friend. Her friend has Cerebral Palsy and she uses a walker to help her get around. They are in a stretching class together at our local dance studio and my daughter says that her friend enjoys the class, but she falls down a lot. I explained to her that her friend has a disease that causes her muscles not to work too well. (That is about as detailed as I wanted to get into it with her without doing more research to explain it better...)

So she asked me, "Will she get better or will she always be like that". I told her that she will always have the disease, but there are doctors and scientists looking for ways to cure it. Then I said, it is sort of how you will never be able to eat gluten, unless they come up with a way of your body being able to tolerate it. So here is the kicker! She says to me, "I wouldn't want to eat gluten even if I could. The gluten free food tastes so much better!" And I swear she was serious! :D

She doesn't mind being different. We went to a party today for the summer reading club at our local library. My daughter was happy when they brought out the snacks. They had ice creams bars and cookies. She got to have 2 ice cream bars since she couldn't eat the cookies. It wasn't as if she were suffering or anything! ;) And at vacation bible school last week all the kids were jealous of my kids because mine got a full sized homemade gluten-free cupcake and the rest of the kids got a store bought mini cupcake.

That is so cool! I think kids are so open to things, and adults put limits on them that they don't see or feel so they get confused. But I don't have kids, LOL, so this is just my opinion based on babysitting and my friends' kids. Looks like you aren't teaching your daughter that gluten-free food is bad, and that is cool!

Link to comment
Share on other sites
taz sharratt Enthusiast
Today my 7yo daughter and I were talking about her new friend. Her friend has Cerebral Palsy and she uses a walker to help her get around. They are in a stretching class together at our local dance studio and my daughter says that her friend enjoys the class, but she falls down a lot. I explained to her that her friend has a disease that causes her muscles not to work too well. (That is about as detailed as I wanted to get into it with her without doing more research to explain it better...)

So she asked me, "Will she get better or will she always be like that". I told her that she will always have the disease, but there are doctors and scientists looking for ways to cure it. Then I said, it is sort of how you will never be able to eat gluten, unless they come up with a way of your body being able to tolerate it. So here is the kicker! She says to me, "I wouldn't want to eat gluten even if I could. The gluten free food tastes so much better!" And I swear she was serious! :D

She doesn't mind being different. We went to a party today for the summer reading club at our local library. My daughter was happy when they brought out the snacks. They had ice creams bars and cookies. She got to have 2 ice cream bars since she couldn't eat the cookies. It wasn't as if she were suffering or anything! ;) And at vacation bible school last week all the kids were jealous of my kids because mine got a full sized homemade gluten-free cupcake and the rest of the kids got a store bought mini cupcake.

you should be really proud of your daughter sounds like she has a good head on her shoulders.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



plantime Contributor

This is why I always told my kids things. I was told not to tell them when things were bad or someone was sick, it would put too much stress on the kids. I think that it eased their stress, simply because they knew what was going on. Your child showed just how much a child can comprehend and relate to things that are not good, and therefore be accepting. You should be proud of your daughter! Thank you for sharing it with us!

Link to comment
Share on other sites
gf4life Enthusiast

Thanks everyone. I am really proud of her. :D She is very wise for her age!

You may want to rephrase the definition when she is older perhaps. Cerebral palsy is not a disease but it is brain damage to the motor area of the brain. People with Cerebral palsy often have normal intelligence but speech is altered (in severe damage, they are non verbal). The muscles are fine - they just dont get the right messages for co-ordinated movement.

It most often occurs at birth (hypoxia, umbilical cord being entrapped by the baby's shoulder, or wrapped around baby's neck). It can also occurs if the baby requires surgery in the neonatal period and 02 is compromised during the procerdure - heart surgery, closing a defect from spina bifida etc.. The motor area is the first one damaged when oxygen supply is compromised (this was how the neuro guy explained to my friend)

I do plan to explain this more as she gets older. Thank you for the explanation. The amazing thing about this little girl with CP is that she lived for the first year of her life in an orphanage in Kazackstan, and she pretty much just stayed in her crib all day with no stimulation or interaction with others. Her adoptive parents were told that she would never walk or talk (in any language), but she is doing both! She can walk unassisted for short distances, but mostly uses a walker, and she can speak english as well as any other 6 year old. Her parents are amazing, too. They are in the process of adopting another child, possibly from the same area.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,177
    • Most Online (within 30 mins)
      7,748

    a-ball
    Newest Member
    a-ball
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      That's a good idea. It can at least establish the potential for developing celiac disease and can help people decided between a celiac diagnosis and NCGS (Non Celiac Gluten Sensitivity). And it doesn't require a gluten challenge and can be had without a doctor's prescription.
    • awright24
      I have my endoscopy on Thursday, has anyone had the procedure done with a cough? I don't have a continuous cough, but every now and then throughout the day I have sort of coughing episodes. They are a lot better than they were but I called endoscopy and they said to speak to my gp and my gp got back to me and said I need to ask endoscopy if its ok if I have it done still.  Help!
    • MMH13
      Thank you so much, everyone. For the moment my doctor just has me taking iron but hopefully we can reconnect soon. I'm going to look into genetic testing, too. Great advice all around and I appreciate it--and you can bet I'm going off the PPIs!
    • Eldene
      I walk fast for fitness, 4 to 6 km per day. I am also 74 years old. Apart from the Celiac challenge, my lifestyle is healthy. I had a sciatiac nerve pinching under my one foot, with inflamation in my whole shin. It was almost cured, when the other shin started paining and burning. I do stretches, use a natural cooling gel and rest my feet. Can Celiac cause muscle pains/inflamation, or is it just over-excercising?
    • LovintheGFlife
      I recently started shopping at a nearby Trader Joe's store. I was surprised at the number and variety of (healthy) gluten-free options sold there. I must admit their low prices are also quite tempting. However, I am curious as to the labeling on all their packages. While none of their products are certified as gluten-free, many are identified as 'GLUTEN FREE' on the packaging. Are these items safe for celiacs? Has anyone tried Trader Joe's products and have there been any adverse reactions?
×
×
  • Create New...