Medical Frustration?

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

Moderators: Tmagic650, Lori-ann

jruner
Posts: 7
Joined: Mon Apr 06, 2009 4:47 pm

Medical Frustration?

Postby jruner » Mon Apr 06, 2009 5:22 pm

My daughter Mary has "mild CP" she was born premature and had astroke she has right side weakness in her arm and leg and right neglect, she also drools if we let her go to school for too many hours in a day. She has a problem processing what she sees with her right eye. People ask me what type of CP she has and I don't really know, she does not have spasms bot has had heart, lung and neurological problems since birth plus failure to thrive and missed all of her mile stones.

Currently I have been waiting for two weeks to get a report from the neuropsychologist and she is not acting like herself and doesn't even want a birthday party at school. I think she is starting to be more overwhelmed by attention, what can I do to help her? I live in central Idaho and may was doing well until a few months ago and now she seams to be having multiple serious issues, I can't afford to move and medical specialist or over two hundred mile away.

Thanks,

John Runer

LizinTX
Posts: 40
Joined: Wed Mar 11, 2009 6:20 am
Location: Texas

Postby LizinTX » Mon Apr 06, 2009 9:41 pm

Hmmm, is she in a "mainstream" class or "special ed"? Are the other kids bothering her? Making her feel different? Could that be why she doesn't want a party? Would she rather have a party at home with one or two special friends?

I am a little confused, is the neuropsychologist report going to tell you what type of CP or is it to help with the depression/overwhelmed problem? When will you find out?

Do you have her in any kind of therapy right now?

Alright, I guess I have inundated you with enough questions for one post. :lol:
Mom to Jacob (13) Type 1 Diabetic, Sarah (10) CP, and proud wife of Dan.

jruner
Posts: 7
Joined: Mon Apr 06, 2009 4:47 pm

Postby jruner » Tue Apr 07, 2009 6:32 am

Mary is in special ed 20 percent of the time and in regular classes 80 percent. The other children are actually very supportive as are all of her teachers. The report is supposed to help us and the teachers assist Mary with learning and understanding her emotions better. We are also trying to balance how many hours a day she attends school with her chronic fatigue and these emotional issues. We would like to encourage her to be more social but we do not want to overwhelm her either. Mary has always had a hard time expressing what she is upset about it can take several days to tell us.

I think from research I would say maybe "hypotonic" would be the type of CP, she had to have therapy to sit up and totally skipped crawling still has poor balance and right fisting when tired. Both legs were tight until she got physical therapy. It is hard for other people to understand she has CP, because the physical traits are more subtle unless she is tired then they become more and more noticeable including stomping with her weak right leg. She still has some trouble swallowing when she gets tired and stores her food in her cheeks until she can swallow she also likes to eat several small meals to maintain her stamina.

The stroke she had at birth damaged a very large portion on the left posterior side of her brain. She is becoming more and more upset with changes in her routine as she gets older and seems less confident. I am trying to work on the idea of a couple friends attending a party at her Grandma's house. Counseling is something we are trying to get set up for Mary, however it can take her several months to talk to a new person.

John Runer

jlweissmi
Posts: 16
Joined: Mon Mar 23, 2009 11:31 am

frustrations

Postby jlweissmi » Thu Apr 16, 2009 8:09 pm

I think I understand your frustrations. It is sometimest very difficult for other people to understand the challenges our children face and the parent challenges as well. The only advice I can give is to try to keep her routine as consitent as possible. Would it be better for her to perhaps spend more time in the spec. ed room? The only reason I suggest that is it may be a more controlled environment. I am also aware of the benefits of the regular ed room so that would be a tough tradeoff. Best of luck with all of it.

sarahsmom
Posts: 45
Joined: Tue Apr 07, 2009 4:03 pm
Location: Florida
Contact:

Postby sarahsmom » Sat Apr 18, 2009 6:37 am

I'm just wondering, is there a stay-at-home parent? If so, perhaps your daughter can benefit from a half a day at school and half a day home-schooling. This way she will get the education she deserves but without too much stress of being at school for a full day. What grade is she in? I'm wondering because sometimes in high school (if that's how old she is) there are only a few required classes and the rest are electives (just remembering when I was in HS a loooong time ago). Perhaps she can just take the required classes in school and the electives at home.

Good luck to you and your daughter!
Want to see a pic of my DD Sarah? Go to her blog at http://helping-sarah.blogspot.com

jruner
Posts: 7
Joined: Mon Apr 06, 2009 4:47 pm

Postby jruner » Sun Apr 19, 2009 11:08 am

Mary is in second grade. We just received some test results from The Idaho Elks Hospital that state in speech and motor skill areas Mary is at a five and half year ability level. Mary is 9 years old now and we are still waiting for the Neuropsychologist's results. We have asked for some mental health services. I am also considering getting a service dog for Mary to facilitate a constant for her no matter where she has to be. Home school or at least partial home school is a route I would like to go, but the local school district is a little bit un-supportive. Advice would be great!

John Runer

LizinTX
Posts: 40
Joined: Wed Mar 11, 2009 6:20 am
Location: Texas

Postby LizinTX » Sun Apr 19, 2009 9:00 pm

I stated in my other ranting post that I homeschool. I will help you in any way I can. What state do you live in? Some are more homeschool friendly than others. Let me know what state and I will find some links for you.
Mom to Jacob (13) Type 1 Diabetic, Sarah (10) CP, and proud wife of Dan.

jlweissmi
Posts: 16
Joined: Mon Mar 23, 2009 11:31 am

schools

Postby jlweissmi » Mon Apr 20, 2009 9:15 pm

I can't speak for every state but i'm sure they're similar thanks to IDEA. Schools will try to guide you in ways that are convenient for them. I beleive they HAVE to do everything to accomodate you and your daughter. I know students who are homebound for accidents the school is required to send a teacher to the house. You may want to ask and if you don't get the answers you like then demand still not happy hire an advocate or threaten to. They don't like that. Also write everything you can in her IEP. Even if they don't follow through or you don't feel it's absolutely necesary if it's there they are bound to it. Hope this helps.

sarahsmom
Posts: 45
Joined: Tue Apr 07, 2009 4:03 pm
Location: Florida
Contact:

Postby sarahsmom » Wed Apr 22, 2009 6:23 pm

Can I also recommend something? I'm not sure if you have this where you live, but have you considered a Montessori type school? You said Mary was at a 5 1/2 year old level, so they wouldn't put her into a grade but group her where her abilities were. You could still try the half days. Also if your school district is unsupportive, perhaps the district in the next county over can help. Maybe Liz can shed light on this, but I was under the impression that homeschooled children follow state guidelines, not the local school district.
Want to see a pic of my DD Sarah? Go to her blog at http://helping-sarah.blogspot.com

jlweissmi
Posts: 16
Joined: Mon Mar 23, 2009 11:31 am

Montessori

Postby jlweissmi » Thu Apr 23, 2009 9:56 am

Montessori might be a great choice. I've not thought of it in that regard but it's true they would probably place her in a small group that is developmentally appropriate. Great Idea.

jruner
Posts: 7
Joined: Mon Apr 06, 2009 4:47 pm

Postby jruner » Sun Apr 26, 2009 1:28 pm

Homeschooling Mary is looking like a possibility more and more. We live in Challis, Idaho. I recently found out that in Idaho I can do duel enrollment even if the school doesn't like it! I am thinking if public school is too much for her we may only be getting speech at school and doing everything else at home or with private providers.

Thanks,

John Runer

sarahsmom
Posts: 45
Joined: Tue Apr 07, 2009 4:03 pm
Location: Florida
Contact:

Postby sarahsmom » Sun Apr 26, 2009 7:38 pm

I'm glad you can do duel enrollment. This way you can homeschool but still be able to take her into the actual school, if need be. Who knows? That balance might be perfect for her.
Want to see a pic of my DD Sarah? Go to her blog at http://helping-sarah.blogspot.com

MyraM
Posts: 2
Joined: Sun Feb 13, 2011 10:45 pm

Re: Medical Frustration?

Postby MyraM » Sun Feb 13, 2011 11:28 pm

It would really be difficult to have a medical specialist for your daughter two hundred miles away from your place. The best resort for Mary is home schooling. It could be the best for her until she would be able to cope up with her school environment.
Medical TV shows