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we got the diagnosis for cp

Anonymous
Posted by Anonymous
  • 26 Replies
for our 16 month old And I've accepted it. My husband has accepted it. But our family keeps saying that if we pray it will be fine and she won't have it. I know sometimes doctors are wrong but they aren't this time. I've know something was different about her muscles since we brought her home. I love her the same as I did prediagnosis but it is really frustrating when my family keeps bringing it up and will not let it go. Don't they understand how hard it is to go back and forth with a child's medical stuff? She's perfect to me and cp is just part of who she is. She is doing great and we have a lot of therapy for her which helps a lot. Why can't they just accept it and move on?
We found out in November btw. And boy were the holidays fun !
Posted by Anonymous on Jan. 6, 2015 at 10:30 AM
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Replies (1-10):
MellowMum330
by Bronze Member on Jan. 6, 2015 at 10:32 AM
Have you told your family how you feel? So sorry that they are putting you through this
LilyofPhilly
by Platinum Member on Jan. 6, 2015 at 10:32 AM
I have a good friend with CP. I forget she has it. It's such a narginal part of who she is. She's a special education teacher, and one of the strongest people I know.
Anonymous
by Anonymous 1 - Original Poster on Jan. 6, 2015 at 10:33 AM
Yes. They just shake their heads like they will not hmeven hear a word and then tell me "let's just wait and see" when I agree to just end the conversation it comes back up when I'm working with her legs or "babying her" she is not walking and just started tummy crawling

Quoting MellowMum330: Have you told your family how you feel? So sorry that they are putting you through this
Superlaura328
by Platinum Member on Jan. 6, 2015 at 10:36 AM
1 mom liked this

Maybe they're in denial? That's a pretty crazy thing for them to say :/

My oldest was diagnosed with CP at around that same age. A piece of advice that I can give to you is to take medical advice into consideration (of course!), but don't let doctors tell you what your child can and can't do at this age. I took my son (now 12) to a neurologist when he was about two... he told me that my son would never walk. It was devasating news. He also told me that my son would likely not function in a regular classroom. He learned to walk at age 3 using a walker, and independently at age 4. Now, he runs and plays with his friends. Is he as fast or as stable? No, but he still has a great time and is a very happy boy. He's been in general ed classes since kindergarten, and just receives intervention.

Start early and get her into a developmental preschool (UCP has many, as well as some other organizations). This was a tremendous help for my son (and if money is an issue, UCP does offer programs to help with that... we paid very little for him to attend).

It's going to be okay, mama :)

Anonymous
by Anonymous 1 - Original Poster on Jan. 6, 2015 at 10:39 AM
I have no doubt my Dd will get far. she is a little fighter. She's always so happy. It only affects her legs . It's not even a problem just something different about her. She just has different needs then our other children and that's fine. I think they feel like we're saying something is " wrong" with her even though we've explained that it is not like that. Her brain was injured during delivery and it afffexts her muscles. That's all. Nothing else. She reacts, sees, hears, babbles, feels just like everyone else.

Quoting LilyofPhilly: I have a good friend with CP. I forget she has it. It's such a narginal part of who she is. She's a special education teacher, and one of the strongest people I know.
Anonymous
by Anonymous 1 - Original Poster on Jan. 6, 2015 at 10:45 AM
1 mom liked this
Thanks. We have eci and they cover all of her therapy. Her neurologist is wonderful. He explained everything in a easy to understand way and told us that there is no way to know how far she'll get. That the best thing we can do is help her get as far as she can. All of her drs have been great but he made us feel so comfortable and at ease the first time we met with him. Right now we have lots of therapy and he said that before she is in prek age he is going to connect us with people to help her get prepared and to make sure to keep up with tutors just in case she starts struggling. It is just like with any kid. You learn to do what's best for that child

Quoting Superlaura328:

Maybe they're in denial? That's a pretty crazy thing for them to say :/

My oldest was diagnosed with CP at around that same age. A piece of advice that I can give to you is to take medical advice into consideration (of course!), but don't let doctors tell you what your child can and can't do at this age. I took my son (now 12) to a neurologist when he was about two... he told me that my son would never walk. It was devasating news. He also told me that my son would likely not function in a regular classroom. He learned to walk at age 3 using a walker, and independently at age 4. Now, he runs and plays with his friends. Is he as fast or as stable? No, but he still has a great time and is a very happy boy. He's been in general ed classes since kindergarten, and just receives intervention.

Start early and get her into a developmental preschool (UCP has many, as well as some other organizations). This was a tremendous help for my son (and if money is an issue, UCP does offer programs to help with that... we paid very little for him to attend).

It's going to be okay, mama :)

j3st3r
by on Jan. 6, 2015 at 10:52 AM

 Hugs.

It took A LOT of time for my in-laws to accept Amie's vision dx.  The were convinced she had the one of 40 sub-types that goes away on it's own.

Now, she's just Amie.  Almost no one remarks on her eyes moving back and forth.  She acts like a normal 2-year-old.  We KNOW her vision is poor, but she manages just fine.

They get it now.

Superlaura328
by Platinum Member on Jan. 6, 2015 at 10:52 AM

Awesome :). Good doctors really do make all of the difference. Back in Florida, we really didn't have any great ones (except for his physical therapist... she was AMAZING!). Here in Texas, he's started going to the Scottish Rite hospital and they are absolutely terrific. 

Quoting Anonymous 1: Thanks. We have eci and they cover all of her therapy. Her neurologist is wonderful. He explained everything in a easy to understand way and told us that there is no way to know how far she'll get. That the best thing we can do is help her get as far as she can. All of her drs have been great but he made us feel so comfortable and at ease the first time we met with him. Right now we have lots of therapy and he said that before she is in prek age he is going to connect us with people to help her get prepared and to make sure to keep up with tutors just in case she starts struggling. It is just like with any kid. You learn to do what's best for that child
Quoting Superlaura328:

Maybe they're in denial? That's a pretty crazy thing for them to say :/

My oldest was diagnosed with CP at around that same age. A piece of advice that I can give to you is to take medical advice into consideration (of course!), but don't let doctors tell you what your child can and can't do at this age. I took my son (now 12) to a neurologist when he was about two... he told me that my son would never walk. It was devasating news. He also told me that my son would likely not function in a regular classroom. He learned to walk at age 3 using a walker, and independently at age 4. Now, he runs and plays with his friends. Is he as fast or as stable? No, but he still has a great time and is a very happy boy. He's been in general ed classes since kindergarten, and just receives intervention.

Start early and get her into a developmental preschool (UCP has many, as well as some other organizations). This was a tremendous help for my son (and if money is an issue, UCP does offer programs to help with that... we paid very little for him to attend).

It's going to be okay, mama :)


1boy1girlmama
by Gold Member on Jan. 6, 2015 at 10:55 AM
1 mom liked this
My 5 yr old has cp on her left side and her right leg is also a little involved. DH's family was the same way they didn't believe us. But once they were around her more and as she got older they understood a bit more. I would just tell them denial isn't going to help her.

My girl started walking unassisted about 2 and really took off around 2.5. She has a limp and wears braces on her leg but aside from that she is so normal I forget she has it! She is even in the advanced kindergarten class at school cp doesn't hold her back much. Granted we have done lots and lots of therapy which when she was younger I wasn't sure it was working, but now I can see it helped a ton.

Your little girl sounds like the most important people in her life (you and her dad) are there to make sure she gets what she needs and that is the most important thing.
demonica29
by on Jan. 6, 2015 at 10:57 AM

Love and hugs coming from Arizona. I don't know what else to say, other than, family kinda sucks.

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