CP and reading difficulties

iVillage Member
Registered: 07-30-2003
CP and reading difficulties
4
Wed, 07-30-2003 - 12:32pm
Hi, my name is Judi and I'm the mom of a seven year old boy. I use to post on the cerebral palsy board quite a bit but stopped about three years ago. My son is entering the second grade in September. My son is quite bright but unable to learn to read using the phonetic method taught in his public school. He is seeing a reading tutor twice a week and will be in resource room come September for 90 minutes a day for reading. The tutor (who's also the resource room teacher) says Josh is dyslexic. Josh is learning to read using a method called Recipe for Reading. I would like to know if anyone else has a child using the same method? Josh also was diagnosed with hypotonic cerebral palsy at age 13 months and growth hormone deficiency at age 5. He receives injections daily of growth hormone and has physical and occupational therapies twice a week.
iVillage Member
Registered: 08-08-2003
Fri, 08-08-2003 - 9:54am
I'm sorry to but in with this..but I just started browsing here and I can't believe what I read as your history sounds like my current situation. I was wondering if you would be able to share more information with me. My son is 14 months old, has been in PT/OT since 4 months old due to hypotonia and torticollis (head tilted to side). He has made GREAT progress and we are anxiously awaiting his first steps I pray. I'm especially curious about growth hormone information. How and why did that come up? My son was on the 75% growth curve but dropped and dropped to now the 10%. He has stayed on 10% so doc's seem less concerned. He's had EEG's done, first one was suspicious (at 4 mo) did MRI and found normal, and repeated EEG done about 9 mo old and it was normal. No seizure activity. My son favors one side more has had gross and fine motor delays. So far cognitive and socially seems fine. Again, sorry to but in but hope you can take time to help me. Thanks - Wendy (Mitchell's mom (14 months old) and Laura's mom 7 yo) ps - never thought about CP message board, but Mithcell hasn't been officially labeled CP yet.
iVillage Member
Registered: 07-30-2003
Sat, 08-09-2003 - 11:03am
Hi Wendy, I hope things are going alittle better for you. My son was alittle over 5 pounds, 16 inches at birth and always small for his age. He didn't hit 10 pounds until he was almost five months old. Our pediatrician never said it was a problem and Josh was always on the 5th percentile for height and weight, since he had so many other health problems, we did not consider his lack of growth or weight gain a major issue. When Josh was three he started to slip below the 5th percentile and by the time he was five he had fallen off the growth charts in both weight and height. Our pediatrician (now our ex-pediatrician) still didn't think it was a big deal but at this time I did. I insisted that Josh be seen by an endocrinologist who diagnosed him with IUGR - interuterine growth retardation which means he did not grow properly in the uterus and never caught up to his peers. Blood tests showed that Josh's pituitary gland was not releasing the proper amount of growth hormone. Josh then underwent several more tests to see if his thyroid was functioning properly, he had full skeletol xrays, a bone age was done and finally an MRI of the brain to rule out a tumor on the pituitary gland. The endocrinologist started Josh on growth hormone treatments in July of 2002 and one year later he has grown 3 inches and gained almost 4 pounds. He is no longer wearing toddler size clothing at age seven and while still not on the growth charts in height or weight, he is getting closer, he is now the size of a "normal" five year old. Feel free to write me directly at Mom2Joshua@aol.com for questions or a sympathetic ear.
iVillage Member
Registered: 05-21-2003
Fri, 10-17-2003 - 1:42am
Dear Judi,

Hi, my son is also seven and has mild CP. He has severe speech articulation disorder, a severe fine motor delay, and a small physical delay. He also suffers from severe reflux. He receives speech, ot, and Pt at the school. We are also having trouble with reading. He is in second grade and reading at a first grade level. We are awaiting testing for dyslexia within the next few weeks. I'm not sure it will help much since our school has no dyslexia program even if he is diagnosed until third grade. We have been using the Hooked on Phonics program since Kindergarten. It has helped, but has been slow going. We live in an isolated small town in Texas on the border of Mexico due to my husband's job. Our resources are limited, but I fight hard at the school and advocate for his rights almost daily. The school didn't even have an Occupational therapist until I fought for one. Anyway, I would love to learn more on the program your son is using and would be glad to share anything new we try with my son that helps. Our biggest problem this year is that the kids are picking on him and he is becoming more self-aware of his disabilities. He has become very angry and started acting out in class, in fact, he got sent home today. He told me he feels like a freak and the kids won't sit by him on the carpet at reading time, etc. Have you experienced anything like this? I hope you haven't, but I am desperate for ideas on how to help him. Reading used to be our biggest concern, but this has overshadowed it this year. He is scheduled to see a psychologist next week, but I fear they may come up with some crazy diagnosis of ODD or ADD (although he's been tested before and none found) when I know it is because of his "not fitting in". Please email me at ejlopez@gte.net if you have any advice or just want to vent! LOL! Adrienne
iVillage Member
Registered: 03-25-2003
Fri, 10-17-2003 - 9:23am

Hugs to ALL of you, esp Adrienne!!! I'm fearing that yall won't be able to support each other and talk, just judging from the dates when the messages were posted... I'm thinking the ones posted in July or Aug probably doesn't even come by to check for responses anymore. That's the sad thing about a slow board.


But anyone that DOES read this, ((((Hugs!!)))) you all are dealing with many of the same things and I wish I could get everyone back on this board just to touch base and 'meet' here.


Anyway, I'm a mom of a sweet ds with CP as well. I used to post here and on the CP board a long time ago, and decided to stop in, in the past few days for some reason (thinking God might've directed me here, because I've found people who are needing to talk to someone). But my Remy has spastic hemiplegia (left side) and seizures. His seizures are totally controlled by meds at this time, so that's hardly even an issue. But I do wonder about the reactions of kids in his class in the future. He just turned 6 but is still in a pre-school special ed class. He just added on 2 hrs of regular Kindergarten to his day, and he has adjusted wonderfully with it. The kids are still young enough not to care that anyone in their class is different, but I know I do worry about just what you (Adrienne) posted about. Remy will start regular Kindergarten next fall, and will then be dealing with 'normal' kids and he will also be 2 yrs older than they are. I'm hoping that won't turn into a factor when he gets older and the kids start realizing the age difference. Remy is small for his age (about 7-8%) so he's not below average, just small... so hopefully that will actually keep him from appearing 2 yrs older than everyone else later on. The physical difference will be enough of a challenge, we don't need the 'age thing' to come into factor as well!


You can't tell from looking at Remy that he has medical concerns, unless you see his AFO, or notice that he doesn't use his left arm. He DOES move his arm, so it's not that noticeable until you try an activity that requires both hands... I think that's when the other kids will notice. Remy is still at the point where he has no clue anything is different about him (what a blessing that is!!!) but I know one day he will 'find out' and realize the differences. I wish I had some ideas for you, Adrienne... I haven't gotten there yet, and but I can totally understand your worries. Especially that part about the counselors/psychologists tacking on ODD or ADD... I also agree with you that he doesn't have those disorders, but that his behavior problems stem from his feeling ostracized by his classroom peers. I bet the PSYCHOLOGISTS would feel the same way if they were treated the same way by THEIR coworkers and peers. And a 7-yr old isn't going to have the emotional tools to be able to know how to handle it without some acting out. I'll pray for you- that the psychologists will be smart enough to realize that. No more medical diagnoses and simply treating with meds!!!!


I'm just 'big' on not treating every social and psychological problem with meds. Can you tell??? I didn't grow up with such a prevalence of medicated kids when I was a kid... it's a soapbox I will have to stay off of otherwise I'd get totally off track.


I am also in TX... I used to live in San Antonio but now I'm waaaay up in the TX panhandle, up between New Mex and Oklahoma. Hello fellow Texan!!! (to Adrienne)