I have cerebella ataxia. Mine came out about 5-6 years ago. It came out when I was pregnant. My daughter is now almost 6 years old. I hate that I cannot do things with her that I could've done 10 years ago. It is so heart breaking when she asks me to do things with her that are just not possible for me.
TEACH YOUR BODY TO DO OTHER AMAZING THINGS THAT ARE SPECIAL TO YOU TOO
LOZ
It is incredibly difficult to bring up a family, at the best of times. Luckily my kids are older now and really great at helping me. I think you probably need to try and explain to your daughter that sometimes Mummy cannot always do stuff but try to find things that you can do together and share. Kids are amazing and want to help once they understand : )
Love Lit
Hi,
I have got two questions. Did you have the rhogham shot and do you have mercury fillings?
Hi butterfly,
I too suffer from CA. I always think the present day kids are more receptive and understanding, and your daughter will understand gradually the situation. Now I have a 9 month old grandson and I am unable to do many things, except I put him on my lap for a little time. My husband suffers from Parkinson’s and fortunately has his mobility to some extent. I know with CA the difficulties of parenting but you are doing great taking charge of the situation.
Nan.
I too, have ataxia. I'm not sure what kind-cerebal or herditary. I am 63 years old and have lived with it all my life, plus I also have depression. I went to the Amen clinic in Bellevue, WA and was told there is a link between the two. I was diagnosed in 2007, but have had it for years. IN the 50's (when I was born) they didn't know about either disease, so I suffered; being called clumsy, backwards, etc., and when I got older, (my personal favorite) , having too much to drink. I now use a cane for balance, but I have four grandchildren and I run (sortof) and play with them. The other writer, LOZ, was right: do what you can and find things you can do with your daughter. She will understand if there are mobility things you can't do and other things you can. Remember that many other people have Ataxia and other disobilities. People know so much more about things like that now and there is a greater understanding.
I have the same Ataxia is you. But mines hereditary. Yes it is hard. I have a 13 year old that I cant discipline him the way I want. And I have 2 adult daughters that have kids. And I cant play with my grandchildren. So I know the feeling. Now I have to go to court. Because my son wants no part of his father. So I have to prove to the courts I can take care of him. Im scared!
I just recently had a baby girl, her mother and I are no longer together, everytime I go to see her her mom tells me to sit down if I want to hold her it's very frustrateing and insulting, I've lived with this for over 20 years I know how to handlel myself!!! I know this dosen't exactly fall into what you were saying but thats my little rant.
I know it is. I couldnt hold the babies on less I was sitting and had someone next to me, like I was watched as a child. People dont understand We don't do what we cant!
randy said:
I just recently had a baby girl, her mother and I are no longer together, everytime I go to see her her mom tells me to sit down if I want to hold her it's very frustrateing and insulting, I've lived with this for over 20 years I know how to handlel myself!!! I know this dosen't exactly fall into what you were saying but thats my little rant.
I understand Lori and Randy. My friends and even my children have me sit down when I hold their babies, until I show them that I'm not going to drop their children and I' even tell them when I need their help with their children. That's one nice thing about getting older: you know your limitations and aren't afraid to ask for help,
Butterfly, I came down with cerebellar ataxia when my youngest was 6 weeks old. I know the pain you're experiencing. One of my most difficult memories is having to have her walk into the ER after she got a fish hook stuck in her toe. One thing I could do: Child puzzles with my 2-year-old, because I couldn't read very well. The big pieces were fairly easy to handle. I agree with my fellow ataxians, stay strong and do what you can. My daughters are some of the most compassionate, understanding people I know. (They're 22 and 24)
Try to explain your ataxia to your child. Children are amazingly resilient and understanding! Believe it or not, your disability can be a learning tool for your child, helping her to be more empathetic and tolerant. Try to focus on the things you're able to do, rather than the things you're unable to do with her. You sound like a very loving mom and that means more than anything!!!
Thanks John Im tring real hard!
John "JC" Colyer said:
Love comes through even when you have Ataxia, be honest and show it , stay strong!
Lori said:I have the same Ataxia is you. But mines hereditary. Yes it is hard. I have a 13 year old that I cant discipline him the way I want. And I have 2 adult daughters that have kids. And I cant play with my grandchildren. So I know the feeling. Now I have to go to court. Because my son wants no part of his father. So I have to prove to the courts I can take care of him. Im scared!
I've just been trying to find things that I can do with my kids. We've been playing alot of board games and lots of reading to them. I explain to them that are just somethings that I can't do with them but I try to focus on what we can do together.
Hi butterflyflyaway,
I am an autism mom, researcher, and expert. I find it interesting that you got "cerebellar ataxia" when you were pregant. Did you by any chance get the flu shot at this time. The flu shot contains 25 mcg of mercury. If you cannot detox the mercury, your enzymes in your stomach will be affected. This will make you gluten sensitive. If you are gluten sensitive and you don't know it and continue to eat gluten your brain will become compromised. If you stop eating gluten you will stop the negative effects on your brain.
I proved to my insurance company what happened to my daughter with my compiled research. I would be happy to send this to you. Mercury can be extremely harmful if you cannot detox it.
Hi,
I am an autism mom, researcher, and expert. I find it interesting that you got "cerebellar ataxia" when you were pregant. Did you by any chance get the flu shot at this time. The flu shot contains 25 mcg of mercury. If you cannot detox the mercury, your enzymes in your stomach will be affected. This will make you gluten sensitive. If you are gluten sensitive and you don't know it and continue to eat gluten your brain will become compromised. If you stop eating gluten you will stop the negative effects on your brain.
I proved to my insurance company what happened to my daughter with my compiled research. I would be happy to send this to you. Mercury can be extremely harmful if you cannot detox it.
I wonder if what little games I play with my Grand son that's almost 5 would work for you too. I direct him to help me do some things to exercise my body like walking a little bit every week when he comes over. I tell him how he's helping me get stronger.
My Grand daughter is 9 and now is very understanding and knows my limitations now because I tell her what I can do but exsplaine there are somethings my body won't do.
He also love playing the Wii Nintendo games like bowling, backetball, tanks etc. He's gotten really good at these. Some I can play and some I tell him I'll play next time and ask him to show me how it should be done or how he does it. And how great he is that I wish I could do that as good as him. He loes to hear that! This way he doesn't focus on what I can't do and neither do I. :0)
Hope that gives you even another thought to think about. :0)
Just think what a great thing that you are really teaching her about helping others and not to shun people because of their disabilities. Some kids never get the experiance or exsposure. I think it's just the real world so better they know right? :0)
I think it's so great that you can turn it around and help her be possivite about it too if you are (even if I have to fake it sometimes it works)! :0} I'm sure someday she will come across someone that will appreciate her knowing how to handle cituations or help out in some way.
My thought is that my Grand kids are more well rounded because of me having ataxia. I get a chance to teach them to be more tender to others with disabilities.
I think it come down to how you choose to deal with it, because I am willing to bet that it doesn't bother her at all. She accept and loves you anyway Mom! :0)
Hi Rose, I know your right on! :0)
rose said:
Try to explain your ataxia to your child. Children are amazingly resilient and understanding! Believe it or not, your disability can be a learning tool for your child, helping her to be more empathetic and tolerant. Try to focus on the things you're able to do, rather than the things you're unable to do with her. You sound like a very loving mom and that means more than anything!!!
Your right. These are some great ideas.
Jeannie Ball said:
I wonder if what little games I play with my Grand son that's almost 5 would work for you too. I direct him to help me do some things to exercise my body like walking a little bit every week when he comes over. I tell him how he's helping me get stronger.
My Grand daughter is 9 and now is very understanding and knows my limitations now because I tell her what I can do but exsplaine there are somethings my body won't do.
He also love playing the Wii Nintendo games like bowling, backetball, tanks etc. He's gotten really good at these. Some I can play and some I tell him I'll play next time and ask him to show me how it should be done or how he does it. And how great he is that I wish I could do that as good as him. He loes to hear that! This way he doesn't focus on what I can't do and neither do I. :0)
Hope that gives you even another thought to think about. :0)
Just think what a great thing that you are really teaching her about helping others and not to shun people because of their disabilities. Some kids never get the experiance or exsposure. I think it's just the real world so better they know right? :0)
I think it's so great that you can turn it around and help her be possivite about it too if you are (even if I have to fake it sometimes it works)! :0} I'm sure someday she will come across someone that will appreciate her knowing how to handle cituations or help out in some way.
My thought is that my Grand kids are more well rounded because of me having ataxia. I get a chance to teach them to be more tender to others with disabilities.
I think it come down to how you choose to deal with it, because I am willing to bet that it doesn't bother her at all. She accept and loves you anyway Mom! :0)
Jeannie, I have a Wii Fit I find that helps alot there's aloso a kids version called Nick Fit, I'm sure your Grandson would enjoy helping and playing that with you too
Jeannie Ball said:
I wonder if what little games I play with my Grand son that's almost 5 would work for you too. I direct him to help me do some things to exercise my body like walking a little bit every week when he comes over. I tell him how he's helping me get stronger.
My Grand daughter is 9 and now is very understanding and knows my limitations now because I tell her what I can do but exsplaine there are somethings my body won't do.
He also love playing the Wii Nintendo games like bowling, backetball, tanks etc. He's gotten really good at these. Some I can play and some I tell him I'll play next time and ask him to show me how it should be done or how he does it. And how great he is that I wish I could do that as good as him. He loes to hear that! This way he doesn't focus on what I can't do and neither do I. :0)
Hope that gives you even another thought to think about. :0)
Just think what a great thing that you are really teaching her about helping others and not to shun people because of their disabilities. Some kids never get the experiance or exsposure. I think it's just the real world so better they know right? :0)
I think it's so great that you can turn it around and help her be possivite about it too if you are (even if I have to fake it sometimes it works)! :0} I'm sure someday she will come across someone that will appreciate her knowing how to handle cituations or help out in some way.
My thought is that my Grand kids are more well rounded because of me having ataxia. I get a chance to teach them to be more tender to others with disabilities.
I think it come down to how you choose to deal with it, because I am willing to bet that it doesn't bother her at all. She accept and loves you anyway Mom! :0)