Educational Issues Among Children with SB

[Holly]

Overview
To meet the physical, social, emotional and academic goals of children with Spina Bifida and hydrocephalus, specific needs must be weighed and considered through testing and evaluation, class placement, education services, social and emotional adjustment.

The Value of Testing
All children have abilities, some of which are better than others. Unfortunately, children with physical disabilities are often labeled based on their disability rather than by their strengths or skills and need additional assistance to identify their educational abilities.
Required by state and federal guidelines, evaluations provide basic information about children's intelligence, achievement levels, and occasionally social and general functioning. Some psychological evaluations test for language, learning disabilities and social/emotional functioning.

Key Findings
Research linking the physical aspects of Spina Bifida with hydrocephalus to intelligence and learning demonstrate that children with Spina Bifida with hydrocephalus possess:
Average IQs, often with significantly higher verbal than nonverbal skills resulting in greater reading and spelling skills and much lower math skills.
Poor perceptual-motor (non-verbal) abilities that affect their eye-hand coordination, which can create problems with handwriting and other motor activities
The higher that the lesion is on spinal cord is affected, the greater the possibility that intelligence and motor skills will be lower. More severe hydrocephalus is associated with lower intelligence scores.Children or adolescents with Spina Bifida and hydrocephalus may have problems with memory, comprehension, attention, impulsivity, sequencing, organization and reasoning-areas that could emerge as problems as their school experiences become more complicated.

The Importance of Evaluation, Placement, Homework and Parents
Even if children are performing well in regular classroom work, they should have psychological or neuropsychological testing to identify specific strengths and potential weaknesses and accurately place children with Spina Bifida in school. Parents, along with educators and health professionals, can request their children with Spina Bifida constructindividual education programs (IEP) to reflect special education services.

Studies show that teachers rate children with Spina Bifida and hydrocephalus as hard-working as other children. However, motivation in school can become an issue to those children who are overly dependent on parents. For children with relatively poor motor skills, homework can become an obstacle to academic performance. Fortunately, calculators and computers can help to ameliorate problems with math and written work.

Children diagnosed with Attention Deficit/Hyperactivity Disorder (ADHD) face additional problems in paying attention or being easily distracted from their work. Medication, as a possible intervention, can help and the improvement in attention and concentration is obvious.

Above all, it is important that teachers, parents and health professionals all focus on the children with Spina Bifida/hydrocephalus. Nothing should take precedent over the students' best interests.


SOURCE (http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2700265/k.BA94/Educational_Issues.htm)

[lolathechecker]

sometimes i wonder if i was mis-diagnosed as a child. they thought i had adhd, but could never figure out why i only had a few symptoms: short attention span, impulsiveness, poor orginization skills, poor math skills, but a very extensive vocabulary(i was speaking in full sentences at 11 months), my attention span was limited to specific things i would pay attention to, like the fact that i would read for hours and hours, but would get bored with my toys after only a few minutes. my mom said that when i was a baby i had small, hairy patch in the small of my back (one of the only visible signs of spina bifida occulta)

[Dodger67]

Has your lumbar spine ever been x-rayed? It might be worth a(nother) look.

[lolathechecker]

i havent ever had it xrayed, but i plan on it after she is born.

[mommy2cnj]

I have had trials along our "school-age" journey, that maybe many of you had. With C & J being in school, I have had to fight more and more for their rights. Set aside the paperwork portion (that's another issue), I have had to fight to get my child something to do on the playground, because they said it's too risky for him to play on the equipment as everyone else does. Umm, he can access the equipment. He can crawl around on it. What they're worried about is injury. Hmmm, wouldn't ANY of them children be at risk of injury playing on playground equipment? I've also had to fight for busing to get my son to field trips. Because I really don't have anyone here to help out if my daughter were to have an emergency back at school, I have to drive along to these field trips (they want me to go in case there is something latex that he may touch). These people should have some knowledge and understanding of these things....I had to learn, just like anybody else would. It doesn't come naturally. However, since I have to drive, they assume he is going with me. STOP! Nope! You STILL have to have handicap-accessible busing. Let's throw in the possibility of me having to go back to the school due to an emergency with my daughter; is it fair to my son that he has to leave early? NO! I had actually been told that they didn't have the money to run another bus. That is SOOOOO illegal for a school to tell a parent of a child on an IEP that "they don't have the $$$" for something....it's called FAPE - Free and Appropriate Education. They don't like hearing FAPE. This is just a couple of the many issues that I've had to deal with in the public education system. My advice to parents of children on an IEP is to take the IDEA handbook (although it may seem greek at the time) and start browsing through it every chance you get. Start learning the laws to know that these schools are not going around them...... Sometimes I feel as if I'm just griping/complaining yet again, but in all reality, all I'm doing is fighting to receive services that my children are *keyword...ENTITLED* to. I'll be glad to share the paperwork issue with anyone who inquires. That's again, a complete, lengthy different issue. I've actually been told that I should be happy that the people who help my children are going above and beyond their call of duty. Erm.....nothing is going above and beyond duty when I'm not demanding anything they aren't entitled to. :)

[Barb]

We have had the exact same issues with fiedtrips! Why do they assume we are going, an dif we do, driving? My son wanted to ride the bus with his freinds!

[mommy2cnj]

Exactly, and they try and take that away from them. However, when we first were enrolling in the district, I came and had a meeting with them 4 months in advance and their #1 priority was "We want socialization for them."

HMMMMMMMMM!

One more thing I'd like to add. I was told by advocacy (they're GREAT!!) that since they want us there due to something that they are not trained in, as well as they expect us to provide transportation, as long as there is a transportation piece in the IEP, we can get paid for our time by the district to do such things. Just an FYI!!

[angel]

My mom fought so many battles. The first one was that the school was going to just put me in special ed assuming that there must be something wrong with my brain since there was something wrong with my legs. She said if she talkes the test like all the other kids and she needs special education then fine put her in it. I almost tested gifted not quite but way far from special education.
In the first grade i had my club foot repaired. This school had no ramps and this was before the ADA and i missed 3 months of school. I failed that year because i missed to many days. Went through first grade again. Then i went to the second grade (remember i am already a year behind) It was time for the spinal fusion. I had to wear a body cast then body brace all of this for a total of a year. Needless to say one can't go to school in a body cast and they were just going to make me skip that and go for second grade the next year. My mom was so pissed. She cried begged, pleaded telling them that i would be 21 when i graduated and it was totally unfair to do this to me again. There was nothing she could do. Finally at the last minute one of the school board members said if they didn't get me a home bound teacher that she would quit the board and drag all of them through the mud publically. They got me my teacher after that. I guess the money just magically appeared!!! Interesting side note to that is this same lady was superintendant when my son started kindergarden. She called me for a meeting in her office. She asked me if i remembered her and of course i did. She told me if there was ANYTHING he needed come directly to her and she would make sure he got it!!! She said after fighting for you this would be easy.

[brennachu]

:bluesbrothers: Woo-hoo! Blues Brothers rule...just had to throw that in there.

Well, yeah, my b/f has spina bifida and he's ace at all things numbers and statistics and (him being a New Zealander) everything aviation.

But when it comes to concentrating...forget it. And he's 33 and he's always had a problem.

When I've spoken with his mum, she said Jamie was never the same once they put the shunt in his head (some IDIOT put it in wrong one time) but since then..that's when the forgetfulness and attention deficit kicked in....about 16(?)-ish.

Would it even help to have him evaluated for ADHD, or is it just a sometimes SB thing?

:3a:
Brenda

[Dodger67]

The one common factor that I noticed when I was at school with a number of other kids with SB:
Many who had shunts had some or other difficulty with language. One in particular spoke so slowly that I'd feel tempted to shake the rest of the sentence out of him.

[Barb]

:bluesbrothers: Woo-hoo! Blues Brothers rule...just had to throw that in there.

Well, yeah, my b/f has spina bifida and he's ace at all things numbers and statistics and (him being a New Zealander) everything aviation.

But when it comes to concentrating...forget it. And he's 33 and he's always had a problem.

When I've spoken with his mum, she said Jamie was never the same once they put the shunt in his head (some IDIOT put it in wrong one time) but since then..that's when the forgetfulness and attention deficit kicked in....about 16(?)-ish.

Would it even help to have him evaluated for ADHD, or is it just a sometimes SB thing?

:3a:
Brenda
Attention issues and hydrocephalus are very common.