Does anyone have a high functioning child with Cerebral Palsy?

MOST HELPFUL POSTS

Jennifer - posted on 11/26/2008

41

22

7

Yes, I do! Our daughter Rachel has Cerebral Palsy and can do everything but walk. She is 3 years old and can use a walker. She started PT to learn how to walk with crutches. Her weakness is in her left side and has a gait. Her CP was caused by an in utero stroke at about 28 weeks (best estimate). She also has some vision issues. She has bilateral hemipilgia in her legs. Other than that she doesn't have any delays. She talks better than an average 3 year old. She has a great personality and can play independently for hours. As far as mood swings (Kristen noted below) she doesn't have anything more than an average 3 year old. Rachel is also very strong willed. She wants what she wants. She isn't a big fan of change. For example, getting a new pair of shoes or eye glasses. She wants the old ones all the time and won't let it go. She has a great memory (sometimes scarily so) and remembers everything! Most of the time we forget she has CP unless she is around other children around her age.

Eileen - posted on 09/19/2011

12

22

0

Hello Hello, my name is Eileen and I have a son Lucas who is 8-1/2 who has mild CP and is a right hemi. He still faces challenges but is doing great. He is in 3rd grade, as is his twin brother Sam. He learned how to crawl and walk using Intensive Pediatric Therapy using the PediaSuit Protocol which is a suit therapy. We are now considering trying stem cell therapy as we feel he has gone as far as he can go physically with physical therapy alone. He has had a few surgeries on his tendons and wears glasses and a brace on both his right hand and right foot. Feel free to contact me anytime at eileen@therapies4kids.com

Lisa - posted on 01/19/2009

33

8

2

I am the mother of Connor who is 12 and has ataxic cerebral palsy and is an A student. Connor just received his black belt in Tae Kwon Do. He has been going since he was 4. It has had the most signifigant impact on his overall well being. I was afraid of even approaching the instructors to work with my son when he was 4 and had just started walking. They are amazing and their response immediately was " he needs to be here, we can help him" When people ask me why Connor can do the things he can do (he managed to learn to ride a 2 wheeler this year!) I say martial arts changed his life. It has helped with his behaviour and attention as well. He has a severe speech problem and is always the slowest, but manages very well. His great sense of humour helps and we've always let him try anything he wants to. He says " I may not do it like you but I'll do it" He calls himself diff-abled. He just does things differently.Connor also plays piano, very differently I'll add. But he does it. We have OT/PT and SLP services as well. But martial arts was the way to go for him. He is also now instructing smaller children, it has done wonders for his self esteem. I always take Dr's predicted outcomes with a grain of salt. Apparently they don't know everything. My son had a moderate brain injury at birth due to medical negligence. We just love him and let him show us what he can do and offer all the support we can. Good luck on your journey.

Samantha - posted on 01/13/2009

1

2

0

Kristin, my 4 year old daughter sounds much like your little girl. My daughter has the same diagnosis but on her left side. She also has very poor vision in her left eye and suspected mild hearing loss, too. My daughter's neurologist warned me a couple of years ago that children with her diagnosis tend to have more behavioral problems. My daughter is also very strong-willed and difficult to discipline. She goes to an Early Childhood program and I also have her enrolled in gymnastics. She is high functioning although she had a speech delay which is what qualified her for the Early Childhood program.

Jennifer - posted on 11/26/2008

41

22

7

Our insurance paid for Hippotherapy. It's horseback riding for children with CP. It works out great to stretch her muscles and helps take care of some of the tone. Have you tried http://www.4mychild.com/? They are great and will help you find resources that you don't know are even available. We also found a company that trades medical equipment so we're not paying out of pocket once we've used the Durable Medical Equipment benefit. Depending on your house hold income she may qualify for SSI. We were denied but you can always try. If she qualifies for SSI (based on disability) then she would automatically qualify for Medicare. (it could be medicaid). You pay on a sliding scale. A lot of the resources have to be sought out unfortunately no one is going to hand it to these kiddos, which in my opinion is unfortunate. Oh, does she have OT & PT through the school system? That is automatic (even in preschool) once you have an IEP (individualized education plan). Does Riley have one yet? With Mild CP she would automatically qualify.



I do have those days that I want to run screaming just because of all of the overhead. Between the doctors, financial obligations, set backs, hoops that I have to jump through for services at school etc it gets to be too much.



Feel free to send along any questions or road blocks you might have run into. It has been my experience that you only find out what is out there from other parents. I'm happy to share the resources I've uncovered with you.

This conversation has been closed to further comments

23 Comments

View replies by

Jennifer - posted on 01/20/2009

10

15

1

Hello Kristin! I have a 14 yr. old daughter with a mild case of CP. She is in "Normal" Jr. High on the honor roll, in Honor Choir, a Puppets Ministry Team, active Girl Scout and very involved in our churches youth group. Lacie uses Fore Arm crutches to get around but besides that is pretty good. Their are some things that are harder then others but for the most part we are truly BLESSED!

Kelly - posted on 01/20/2009

4

1

1

hi ya i am also a mum of 2 children with cp my daughter also has right  hemiplegia and she holds her right arm up as well she wears a splint  she is n a main stream school and is doing realy well bless her. but i do get upset because she  has had a lot of kids making fun of her and also teenagers and it makes me realy angry because emily is such a plasid little girl very cheeky and gets away with a lot but he is so detemined to do hings wich is great .also my 3 yr old son has cp but is unable to walk is speach is brilliant and learing .im so glad i found this because its good to be able to chat with other parents that are going through the same thing

Catherine - posted on 01/12/2009

15

21

1

Laura, you must be an Angel and a very special person:)



With what the world throws at our feet and how we cope and deal with it all, I'm sure is an inspiration to us all. I'm so glad I found this circle of mum's, it's fantastic to talk to and listen to you all:) I wish you all the very best with your loved ones and I know I will be a regular in this circle. especially as my little boy is to embark on a world of surgeries this year and the years to come. The botox he has is nothing compared to our anxieties about surgery.

Laura - posted on 01/12/2009

11

7

0

I have 4 surviving quintuplets, and three of them have CP.  One boy with very mild, and two girls - one with spastic diplegia with some overflow into her arms and one spastic quad who uses a wheelchair.  They are 7.  Caterina, my one in the wheelchair has had three hip surgeries to correct congenital hip displacia - her hips didn't have sockets and her femur grew straight instead of at a 130 degree angle at the hip ball.  Surgery on the bones is TOUGH, but we have also had some muscle lengthening.  It's a walk in the park in comparison.  It depends on the type of muscle release she has.  We had percutanius - basically they put her to sleep for a few minutes and use a needle to go in and "poke" the muscle fascia and perforate it.  It releases the muscle without cutting it, which allows recovery to be fast.  It was outpatient!  We did do an adductor release the traditional way when she was 4 and that was an overnight in the hospital and then the recovery was fast.



 



It's hard to not project your fears on your child when they have surgery - who wants to inflict pain?  But, my daughter is very smart and knew things were going to happen.  We talked about how it would be - that we would go the the hospital and the doctors would come and talk to us about what we were going to do, and then they would give her some happy juice to help her fall asleep.  When she woke up, we would be there waiting for her.  If she would be in a cast, we would tell her that.  With the last muscle release, they put her in some soft braces for a few days to stretch out the muscles, but I could take them off for warm baths (very soothing!).  We just stay as calm as possible and know to ask for "happy juice" or something she can take orally to help her relax before they take her to the OR.  It's a helpful thing for all of us!  That last muscle release, she was singing and chatting with the docs as they wheeled her away. :-)

Celeste - posted on 01/09/2009

7

22

3

Ladies! I was so happy and inspired to read your posts on this thread! I am new to this. I have a 29 month old daughter, Bella Hope-(my beautiful hope) with spastic quadriplegia CP. (She was born at 26 weeks with PVL. We started weekly PT & OT at 5 months.) She is such a bright, strong-willed, happy little girl! The past several months have been extremely frustrating for her (& me) because she cannot move her body the way she wants to. She cannot sit-up, stand or walk. She does commando crawl around...mainly using her left side. It puts a tear in my eye when she says, "Mom, I wanna walk!" After taking her for a second opinion, she is scheduled to have her adductors and hamstrings lengthened next month. We are really excited about this because the doc says she should be able to sit up within 6 months and has a good prognosis for walking with crutches. But I am also very nervous...this will be her first surgury! Bella has extreme anxiety with doctors. She cries and cries just at mentioning "doctor"! If anyone has any advice they could give me about any of this, I'd appreciate it! I hope to be in touch with all of you.



Yes, Everything happens for a reason!

Jennifer - posted on 01/09/2009

41

22

7

Catherine....we say the same thing!!!! "Everything happens for a reason"! :)

Catherine - posted on 01/08/2009

15

21

1

Hi Kristin:) I'm sure it's something about kids with CP, they are so strong willed and determined, it's unbelievable!! My son was born at 27 wks gestation and we were told when he was 10 days old that he would be severely mentally and physically disabled due to a bad bleed on the brain and that we hould think about the option involving pallative care.



But as a mum, that just didn't seem to be an option for me! Now I have an extremely active, smart little boy who keeps his parnts and his 2 older brothers on their toes. He, now at 3 appears to have moderate right side hemiplegia, with his right leg mildly affected. He has yearly botox injections and can walk with the aid of his walker or a loving hand. After intensive PT, OT and speech therapy since he was 6 mths old, the only thing that sets him apart from other children is his physical disability. It seems kids are more excepting of other kids with special needs more so than adults. He has been welcomed with open arms at our local kindy, so we justhope we have the same luck when he starts school.



When I'm having a tough day, I just remind myself how tough he have it in the big wide world, but that he never gives up and is truely an inspiration to us all.



As we say in our family, " Everything happens for a reason ".

Dixie - posted on 01/08/2009

25

19

2

Hi Kristin!  I'm a special ed teacher in KY...I don't have a child with CP myself, but I do have a high functioning CP child at school on my case load.  He is very interesting.  I teach first grade and he is on level keeping up with all of the other kids academically.  I do know his doctor told his mother he would be mentally retarded, but he doesn't show any signs of that.

Kristin - posted on 11/26/2008

5

0

0

That is great advice Jennifer, you are absolutley right! I feel the same way. She is defintely a blessing and is so strong...we are very positive with her and treat her normally like we do our 7 year old. She can do anything she puts her mind to! She may be slower than some when it comes to running and such but so could someone without a disablity!

Martial Arts was also sugguested to us by our PT but Riley was more interested in swimming and gymnastics, so we went with that for now.

Right now we are struggling with insurance! She is very mild but has the CP label so we cannot get individual coverage for her.

It is so nice to talk to people that are going through the same challenges.

Jennifer - posted on 11/26/2008

41

22

7

I think the most difficult thing about having a child with disabilities is managing your expectations. I've been mentally healthier since I took things little by little and not worry about everything that could happen or what the future might hold. I do have hope that she'll be okay but now the hope is based in reality. I think it's easier on all of our hearts to have this approach.

I have 2 daughters (9&11) and a step-daughter (13). They are fantastic with Rachel and help a little. I think the hardest thing about finding out she had a disability was telling them. I needed to tell them so they didn't worry that something else could happen. Now, Rache is just Rache and I think most of the time we all forget that she has disabilities. If someone had asked me that 2 1/2 years ago I would've thought they were crazy. But at this point I don't know Rache any other way.

Kristin - posted on 11/26/2008

5

0

0

I have one other daughter, she is 7. She is a great help to her sister and vice versa. My older daughter is very shy and my youngest with CP is very out going so they are great assets to each other (when they are not fighting). Riley will start Kindergarten next year. She has done well with Pre School and can hold her own. You are right about adults...once Riley and I were walking out of the gym and this guy walked by us and said "that's how I was walking this weekend" (I guess he got drunk and was stmbling around). I wanted so badly to say something to him, I am just glad she was not old enough to know what he was talking about. Sometimes I think the kids think her AFO is kind of cool.

User - posted on 11/26/2008

2

0

0

Anika (6) is extremely smart too, though her social and emotional behaviors are delayed due to spending much of her life in the hospital. She wears SMAFO's and full body theratogs. Her braces span from her shoulders down to her toes, but they help her to walk independently for short periods of time. She's got such a zany sense of humor and just loves everyone to the max. :)

Jennifer - posted on 11/26/2008

41

22

7

Rachel wears AFO's too. I used to worry about other kids making fun of her but our experience is that most kids are more tolerable than the adults. She is in an integrated preschool and the other kids are great with her. We get many more comments from random adults that we don't know at places like the grocery store. Riley will come up with her own defensive mechanism I'm sure if she needs too. Do you have other children as well? We have 3 other girls. They are all older.

Kristin - posted on 11/26/2008

5

0

0

It all sounds so familiar. We also are in PT and OT. Riley is very smart and says some of the funniest things, sometimes I wonder if she has lived a previous life b/c some of the things she says is so above her age. She is so determined! The only noticable difference she has is her walk and sometimes holds her arm up when she is really concentrating. I worry about kids making fun of her later on. She does wear a small orthotic to keep her from walking on her toes.

Brooke - posted on 11/25/2008

19

24

4

my son is riding the line between mild-moderate cp. he just turned 3 in november. with the assistance of his p/t, o/t, speech therapist, and his walker he is very independant. he wants to do everything himself. which we absolutely encourage, i think its very possible to live a good life and be highly functioning with cp if the right groundwork is in place!

Kristin - posted on 11/25/2008

5

0

0

My 4 year old daughter has right hemiplegia. She is very smart but also strong willed. She has been having mood swings and can be hard to disipline, I am not sure if this is common with cp or just age related.

User - posted on 11/25/2008

2

0

0

Hi! My 6 year old has high functioning left hemipligia cp. She has some other health issues due to a yet-to-be diagnosed chromosomal anomaly.

Christina - posted on 11/25/2008

13

25

2

I don't know how old your child is. My sister has a child with mild but noticeable cerebral palsy. He plays sports although not as good as other children and very smart. My sister had him take martial arts for exercise purposes and seemed to have helped a great deal.

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms