Preparing the School for Your Child With Spina Bifida

[Holly]

Preparing the School for Your Child With Spina Bifida
From Terri Mauro, Your Guide to Parenting Special Needs.

Teachers can be great allies in keeping your child with spina bifida safe and successful in school, but you'll need to make sure they have all the knowledge they need to help. Use these suggestions to create a information packet to bring educators up to speed.
Five Things Teachers Need to Know

1. Please be mindful of things in your classroom or school that present mobility problems for my child. Remove or rearrange anything that might keep her from getting around safely and easily.

2. If there will be any sort of change in my child's classroom or routine, please notify me as far in advance as possible so that we can all work together in preparing him for it.

3. It's okay to let my child's classmates know about her condition as long as it is done in an appropriate way; I'd be happy to help prepare a program.

4. My child has a serious health condition, but he is still a child with ordinary interests and hopes and dreams. Please help us keep his life as normal as possible.

5. Please keep the lines of communication open between our home and the school. My child needs all the adults in her life working together.
Educational Implications

[The following is excerpted from Spina Bifida, a publication of the National Dissemination Center for Children with Disabilities. Fact Sheet 12, January 2004.]

Although spina bifida is relatively common, until recently most children born with a myelomeningocele died shortly after birth. Now that surgery to drain spinal fluid and protect children against hydrocephalus can be performed in the first 48 hours of life, children with myelomeningocele are much more likely to live. Quite often, however, they must have a series of operations throughout their childhood. School programs should be flexible to accommodate these special needs.

Many children with myelomeningocele need training to learn to manage their bowel and bladder functions. Some require catheterization, or the insertion of a tube to permit passage of urine.

The courts have held that clean, intermittent catheterization is necessary to help the child benefit from and have access to special education and related services. A successful bladder management program can be incorporated into the regular school day. Many children learn to catheterize themselves at a very early age.

In some cases, children with spina bifida who also have a history of hydrocephalus experience learning problems. They may have difficulty with paying attention, expressing or understanding language, and grasping reading and math. Early intervention with children who experience learning problems can help considerably to prepare them for school.

Successful integration of a child with spina bifida into school sometimes requires changes in school equipment or the curriculum. In adapting the school setting for the child with spina bifida, architectural factors should be considered. Section 504 of the Rehabilitation Act of 1973 requires that programs receiving federal funds make their facilities accessible. This can occur through structural changes (for example, adding elevators or ramps) or through schedule or location changes (for example, offering a course on the ground floor).

Children with myelomeningocele need to learn mobility skills, and often require the aid of crutches, braces, or wheelchairs. It is important that all members of the school team and the parents understand the child's physical capabilities and limitations. Physical disabilities like spina bifida can have profound effects on a child's emotional and social development. To promote personal growth, families and teachers should encourage children, within the limits of safety and health, to be independent and to participate in activities with their nondisabled classmates.

[Dodger67]

There's something about the texts that bothers me.

They are only about the differences.
Its really easy for aprehensive, uninformed teachers and caregivers to lose sight of the fact that the child is also a regular kid with the same behaviour patterns, emotions, socialisation, desires and needs as any other kid.

[kali]

I also felt the same! when people talk about a child or adult with sb they talk only about the causes or disabilities . Aperson with sb is just a regular person , who feels needs and has wants . I think its time people look beyond the name sb and see the person. When I look at my 9 year old son, I forget he has sb, hes just a normal child, who acts like all the other 9 year old kids and wants the same thing. and hes justas good at driving his mom crazyl lol

[Gymp]

No disrespect intended here but when I was sent to public school there was no special integration at all.I was thrown in with the wolves so to speak.It seems as though your centering out the kids with SB and other disabilities making the point that they're different and need integration,they're not,they're people.You can't hold their hands their whole life, they'll fit in fine on their own,if you let them.

Gymp

[angel]

I gotta get in on this one. I agree that there is way way to much emphasis on the differences. I also think that the help that is offered sometimes is to much and isn't good in a number of ways. I am sure i am gonna get blasted for this but here it goes anyway.

A lot of times these kids have aids that are with them all day. For some things i can see it but a lot of time what i hear is the aids do everything for these kids. That is not helpful to the child. The child should have to find a way to do as much as absolutly possible for themselves!!! I will scream this from the mountain top until the day i die because it is true. If there is a learning problem then by all means get the kid some help but a lot of kids I have been told about (mostly from their parents) the kids qualify for it so why shouldn't they have the extra help to make thier lives easier. I will tell you why because it makes them stick out more. Because it isn't teaching them any skills of learning to adapt and learning to overcome a tough situation when there is someone there doing it for them. When my son had problems this year at school getting his things to class. I was told that he qualifies for an aid to carry his books for him and make sure he has all his things for class. This would help him pass the grade but i refused it because it would do nothing else for him! It doesn't teach him that sometimes we have to work a little extra hard to get things done in order to get by in this world. This is not just true for people with disabilities because we are all have our strengths and weaknesses!! I will tell you that he is struggling to get by but he is learning along the way. He is learning lessons about life about himself and about how the world works. When it is time for him to get a job he will have learned that even if you have to fight every day to do that job he can do it. If he doesn't learn this he don't stand a chance in the real world. Fair? that is an argueable point but fair or not that is the way the world works. I want him to find his own way to adapt. That is the only way he will survive and i know that because i speak from personal experience as an adult who has had to fight her way to where she is now. There is no end in sight but it has prepaired me well for whatever life throws at me. I also feel I have an advantage over others because I can adapt easier than others because i have had to do so my whole life. Practice makes perfect.

We are far more alike than different. I am not special, i am not differently abled, I can't walk on my own two feet. Simple, uncomplicated english i can't walk. That is where i draw the line on my differences that is between me and the so called "normal" people. Yeah i got the neurogenic bladder but i learned to take care of that myself as a child and no one knows anything about it. Why? Because i learned to deal with it and it is none of anyone's business what i do when i am in the bathroom. If they don't know it then is it really a difference? I don't know what they do when they are in the bathroom either so there really is no comparison. I suck at math. I know that may be an SB trait but a lot of people that don't have SB suck at it to.

Teachers need to teach as well as parents to the children who don't have a disability, just because some kids don't do everything the same way you do doesn't matter. They also need to teach this to the kids with disabilities. They shouldn't be made to stick out. It shouldn't be pointed out that they are slower (if they are) or that they need extra help (if they do). Parents need to let the kids struggle a bit. I know it is hard to watch as i said before i am going through that now. There is nothing more that i would love (and to be quite honest it would be easier on me to) to just let someone help him coast through. I absolutly can't do it though, and i get crap from a lot of people that keep telling me "he has a problem and you aren't providing all the help he needs" I am providing him with help and the problem isn't completly fixed but he has pulled up 3 grades to passing and the others have improved dramatically and will be up to passing by the next report card. Furthermore he is learning self reliance!! He is learning that maybe he is a lot tougher than he thought he was! He complains daily that it is so hard and to that i respond every day everything worth having is worth working hard for!!!!!!!

Angel

[Dodger67]

:goodpost:Angel for President!!!!
I agree with you 100%

[Gymp]

Well said Angel,you've articulated my exact thoughts in a better way than what I could have written,Bravo!

"Aids" You mean there are actually people that go around with a (for lack of a better word) disabled person all day at school ???? Wow the world sure has changed.I don't think I would have liked that at all when I was a kid.I stood out enough as it was with the way I walked and to have someone chaperoning me all day too, to boot would have made me stick out even more like a sore thumb than what already was.

I feel that school is there so that a child can learn to think for themselves and how to associate with others not just reading,writing and arithmetic.An aid may hamper the first two,no?The goal in life is to learn to be self sufficient...

Gymp

[angel]

Gymp,

Yeah there are aids that help all day long. Get a load of this. My son has SBO he can walk and do everything himself. You would never know he had any disability at all if you looked at him. Someone would have to tell you or you would never know.

Because the diagnosis SB he qualifies for an aid that would carry his books for him to and from each class and get all his things together for him (remember he can walk and carry his own things). How crazy is that????? Is that really necessary! In my opnion it is just stupid that it would be offered to him as it should be clear to ANYONE that is way more than he (and most people) would ever need.

When i was in school (I am 31 now so i think i started Kindergarden about 1982 or 1983) I was tossed in there. And it was sink or swim. Keep up or don't go to school. There were no accomidations but one made for me and that was a little room off to the side so i could take care of personal things.
I had to learn to climb flights of stairs. At 4 years old i was learning by 5 i was a freakin PRO!! I can't count the times i also fell down those stiars (we are talking 12 to 13 stairs) and hit the concrete floor below. That was just the way it was. I carried my own books, had to get to class on time.

I am so greatful that I had to do that. Man it really taught me how to be competitive in this world. Hell i have been fighting to keep up since 1982!!!!

Angel

[naomi6896]

My son Braden is in the sixth grade and they wanted me to send him straight into special ed so that he could get services like PT/OT but I worked at that school for six years four of those years I was a special ed aide. I knew that wasn't for Braden he is smart, just lazy, of course if you offer to do something for him..........he is going to let you. Right now he is considered a part of 504 and he can get modifications and get extra time to do assignments but that is it...............he carries his own books and walks to all his classes....the staff didn't understand why I was so stubborn but I explained to them that his mental capacity is fine it is only his motor skills that are lacking. I said look he will not be a pro football or basketball player I need him to be able to support himself with the use of his mind he needs to go to college and earn a living like that. I think special ed is great for people who truly need it but sometimes as parents we just accept things too easily and before we realize it our children are out of highschool and can't read or write this is not a slam on special ed...........it really isn't..............I just think if your child struggles and still advances then struggle is worth it.....Gymp is right sink or swim there are no aids in the outside world........it is a cruel place and the sooner adjustments are made the better off kids will be......

[dahliafaolan]

First of all, let me say I agree with all the points that you guys have made. The school system nowadays is crazy. I've been mainstreamed since kindergarten and that was a big break through in my area. (I'm from the South so you know how they feel about integration! lol) I'm a wheelchair user, and I have bladder/bowel incontinence problems, but that's it. I can do everything else for myself. They tried giving me an aid too. Like I didn't stick out enough being the only kid in a chair in the entire school! Thankfully my mom turned them down. The schools were always weird about the stuff they did and did not want to offer to help me through school. In one school, they'd offer me the nurse to help me catheterize, but not the bathroom. In another, they made the classroom accessible, but were giving us trouble to pour the sidewalk for me to get there. My personal favorite was that they were very eager to help me get into special ed classes, but when it was suggested that I might need to be tested to get into accelerated classes, they tried putting on the brakes on that one. We fought them for four years on that one. My favorite part was the reason they refused. They said it wasn't possible for a person with my condition to be of an higher intellect. My mom b****ed and griped until they finally did the test. I was found to be 11 points off of being a genius and could read at a college level at 8 years old. I was in the accelerated classes the next day. But I think my favorite of all the stupid things I have heard over the years was something the superintendent of transportation told my mother. For over a month, the bus would bring me to school late. Well, needless to say, my mother went to complain to the superintendent of transportation. He told her that it didn't matter if I was late to school because I was a cripple. I can only imagine the butt reaming my mom gave him!

[Dodger67]

In South Africa the system is/was rather different.
I went to a school for kids with physical disabilities.
The school did not cater for sensory or intellectual disabilities - there are more highly specialised schools for that.
We had a full academic programme plus comprehensive medical/therapeutic services (5-6 fulltime physiotherapists for about 350 kids). About 10% of the kids in the school were wheelchair users. In my grade alone there were always between 4 and 6 kids with SB. Most of the kids (myself included) boarded in hostels as they came from all over the country. The sports programmes included "normal" sports such as field hockey, cricket, tennis, etc for the kids who were "relatively normal", while the "paralympic" types of sports delivered a fair proportion of the previous and current national and international stars - Ernst van Dyk - world wheelchair marathon champion - was a couple of grades junior to me.
I used to take a lot of "heat" from teachers for my laziness - they kept bitching at me that I had the second or third highest IQ in the entire school!

Education policy has changed in recent years - most disabled kids are mainstreamed and the "special" schools have been cut back severely - so much that the kids who really cannot mainstream are at a huge disadvantage. Homeschooling is quite rare here and has become stigmatised to some extent due to the "political" homeschoolers.

[Gymp]

The only consideration I was ever given in highschool was use of the healthroom washroom.One was eligible for bus tickets to and from school if you lived 2.5 or more miles away.I lived 2 miles from school and even though I walked terribly I was turned down for that so I either hitchhiked in winter or rode a bike in the spring and fall.I was a constant truant and was kicked out of school more than once.The last highschool I went to they made me sign a contract that I'd show up every day and not be disruptive.I was really good in art sooo they let me take grades 10,11 and 12 art all at the same time.I ended up with the highest marks in art for the whole school and received a scholarship to study art at university.Just before graduation I dropped out again and threw that all away...A few years later I ended up going to night school and paid out of my pocket to get my grade 13 equivalent to take up an apprenticeship in printing,which I completed and I printed for many years afterward.

Gymp

[angel]

By the time i got to highschool i didn't get any concideration either. I had to be there when everyone else did no extra time to get there. I had a couple of teachers that let me keep a text book in their room only because the damn thing weighed about as much as i did! Other than that i was on my own and by then there was no room for bathroom issues it was the girl's room with everyone else. What i did was wait until i knew that almost no one would be in there so i could have some privacy.

Angel

[naomi6896]

First of all, let me say I agree with all the points that you guys have made. The school system nowadays is crazy. I've been mainstreamed since kindergarten and that was a big break through in my area. (I'm from the South so you know how they feel about integration! lol) I'm a wheelchair user, and I have bladder/bowel incontinence problems, but that's it. I can do everything else for myself. They tried giving me an aid too. Like I didn't stick out enough being the only kid in a chair in the entire school! Thankfully my mom turned them down. The schools were always weird about the stuff they did and did not want to offer to help me through school. In one school, they'd offer me the nurse to help me catheterize, but not the bathroom. In another, they made the classroom accessible, but were giving us trouble to pour the sidewalk for me to get there. My personal favorite was that they were very eager to help me get into special ed classes, but when it was suggested that I might need to be tested to get into accelerated classes, they tried putting on the brakes on that one. We fought them for four years on that one. My favorite part was the reason they refused. They said it wasn't possible for a person with my condition to be of an higher intellect. My mom b****ed and griped until they finally did the test. I was found to be 11 points off of being a genius and could read at a college level at 8 years old. I was in the accelerated classes the next day. But I think my favorite of all the stupid things I have heard over the years was something the superintendent of transportation told my mother. For over a month, the bus would bring me to school late. Well, needless to say, my mother went to complain to the superintendent of transportation. He told her that it didn't matter if I was late to school because I was a cripple. I can only imagine the butt reaming my mom gave him!

Your Mom sounds awesome I always go toe to toe with anyone that says my son cannot do something especially when I know for a fact HE CAN!!!! just today his math teacher requested a conference because he has a 90 average and she is concerned he may need extra help and am I willing to send him to special ed???? last I checked a 90 average is pretty good.....but what do I know you see they get extra funding from the government for special ed kids and if the kid has a physical disability that is just more money all together so they try to shove it down my throat every chance they get........

Good to know you did so great and your Mom sounds AWESOME!!!!!!

[dahliafaolan]

Your Mom sounds awesome I always go toe to toe with anyone that says my son cannot do something especially when I know for a fact HE CAN!!!! just today his math teacher requested a conference because he has a 90 average and she is concerned he may need extra help and am I willing to send him to special ed???? last I checked a 90 average is pretty good.....but what do I know you see they get extra funding from the government for special ed kids and if the kid has a physical disability that is just more money all together so they try to shove it down my throat every chance they get........

Good to know you did so great and your Mom sounds AWESOME!!!!!!Thanks Naomi. She really is a special mom. But my abilities weren't the only reason my mom tried to keep me out of the special ed department. My mom had been looking into the special ed departments from the day I started talking and wasn't happy with the amount of attention that was spent on the kids. It seemed to be that special ed was where they stuck the kids with disabilities when they wanted to forget about them. My mom wanted to make sure I was always in regular or accelerated classes so that i would get the proper mental stimulation I needed. (I was one of those kids you had to make sure I stayed busy or I tended to get in a bit of trouble.)

Good for you, Naomi! Last I checked, a 90 was a great grade so I wouldn't be too concerned with what your school says. You are the mom. You know what's best for your child. Don't ever let anyone try to tell you different. Heck, before you know it, they might be asking your child to take the ACT/SAT whatever your school takes over again just so they can improve the school's test scores. (They actually paid for me to take my third ACT test because they knew I could make above a 25 and bring the school's average up.)

[joybell322]

okay, got a quick question for you all - Lizzie is getting into a public school by the end of next week. I've been homeschooling 'til now. She is getting an aide because bowel incontinence is an issue right now. She'll also be getting physical therapy & occupational therapy. I'd like to let her go without an aide, but I am concerned with the bowel incontinence. It's almost under control, but she still has an accident every now and then. Any suggestions? I want her to learn independence, and she knows I expect pretty much the same things as I expect out of her sisters. But when it comes to the outside world, I turn into a softy. I do want what is best for her, however, and will take or turn down whatever I need to.

[angel]

okay, got a quick question for you all - Lizzie is getting into a public school by the end of next week. I've been homeschooling 'til now. She is getting an aide because bowel incontinence is an issue right now. She'll also be getting physical therapy & occupational therapy. I'd like to let her go without an aide, but I am concerned with the bowel incontinence. It's almost under control, but she still has an accident every now and then. Any suggestions? I want her to learn independence, and she knows I expect pretty much the same things as I expect out of her sisters. But when it comes to the outside world, I turn into a softy. I do want what is best for her, however, and will take or turn down whatever I need to.

my advice would be teach her how to clean up at home first. Once she has that down turn her loose to do it at school. Truth be told sometimes she may come home messy. God knows i have had this issue with my son however there was no way i was going to let him have an aid because there was no reason he couldn't do it himself. As he got older the issue faded away. It is the hardest thing in the world to turn them loose when you can't be there but it is very necessary. Expect an issue here and there because they will come up. An accident may happen but it isn't the end of the world. She may get embarassed one or two times (i sure as hell did when i was little because i didn't have everything perfected but just kept on going!) My son had his share of embarassments as well but learned valuable lessons from them about how to be responsible for his body and his issues.

Angel

[dahliafaolan]

Well I can't say how things will be for your school, but for me, I didn't have an actual aide to help with that. I never could clean myself due to the rods issues. So any time I would have an accident, I would excuse myself from class and go down to the severe special ed class and ask for the nurse and the nurse or aide would clean me up in their bathroom. Then I'd go back to class.

[Gymp]

When I was in school there wasn't a full time nurse on staff,she was there twice a week.

I was given special permission to use the health room bathroom,which I used to clean up after having accidents.

Gymp

[sophiasmommy]

my heart aches inside as my 4 yr old already is recognizing her differences she doesn't want to wear diapers since her soon to be 3 yr old sister doesn't and the kids in her pre-k are loving toward her in a nice christian school but outside of that thers already differences being noticed and then theres the 6 yr old that I feel guilty for disliking who pointed out "my sister is 4 and she doesn'r wear diapers" because somehow she notices sophia was when her shirt was a little up in the back I dont even know my point I am just a wreck sometmes and maybe i want to have a pity party one day out of the year and scream its not fair spina bifida sucks and i hate it

[chelle722]

Thank you SOOOOOO much for writing this! As a mother of an 11 month old child with SB AND a 6th grade teacher this hits home in SOOO many ways! I totally agree 100%. Yesterday my son's PT told me he won't be able to walk without braces AND to never expect him to play competitive sports. WELL thanks to her I am banking on the fact that he will (with God's will) walk the best he can with or without braces and I will NEVER tell him he can't compete with anyone else. In fact I plan on encouraging him to compete and do his best in whatever endeavor he chooses. God bless you! Michelle

[LillyPie]

Lilly is in a public pre school program, she has no aid but does receive PT and OT. I think an aid is over the top. Now when it comes to a school making arrangements and making a school accessable for ANY child with or without SB I agree. I think its about damn time people recognize that not everyone is the same. Thats a plain and simple truth. I have accepted it. And every single child deserves the same chance as all the other kids, disabled or not. Do I think that some people take advantage of resources they dont need...YES! I just want my Lilly to have the same chance as everyone else. What pisses me off is when a public facility claims to be handicap accessable, then when we get there.. they are NOT. Some people who are disabled may not care, but when it comes to my child I DO. I think Ive said it before, I AM HER ADVOCATE and I will fight, say whatever, and be mean to whom ever I need to be to make sure she at least has a chance. No one will ever be able to say that I didnt provide my daughter with all she needs. I will see her struggle and it will kill me inside, but I will do what I can to help her help herself.

I actually think it is a wise idea to prepare the school and teacher for a childs needs, as certain arrangements such as accessability of a class or completion of sidewalks and accessable playgrounds may need to be made, I think those things are fair to ask for.