We need Help! Trying to find a school for our SB Daughter

[BraeleyEliz]

Hello all! We having been reading posts on this site for over two years now. When we found out we were going to have a daughter with spina bifida, we immediately reached out for resources.
She is now 26 months and we live in a school district that has little to no special needs. ****So, we are looking to move and was wondering if anyone knew where we might find some information about schools and/or special needs schools.****
We are looking to get her in the best situation possible, within reasonable location.
We have alot of schools in this area(southern indiana) and it is going to be nearly impossible to travel and scope out all.
ANY INFORMATION WOULD BE SOOOOOOOOO GREAT!

Thank You

[NerdaliciouS]

Errm, you're going to hate me for this but, why can't she just go to a regular school?

[Summer25]

Errm, you're going to hate me for this but, why can't she just go to a regular school?

I second this! Why does she need a special school? Just because she has sb doesn't mean she does.

[Dodger67]

Me third!
She may be special to you and the family but she's not "that" special.

The best possible situation is for her to go to the same local school as her friends and other kids in your area. Unless she has serious intellectual issues or communication problems she should absolutely avoid "special schools".

Welcome to the forum! :happy065:
Lurking for 2 years wow!

[NerdaliciouS]

Exactly what Dodger said.

I'd hate having to go to a special school just because of my physical limitations (You only said SB, so I assume JUST SB). It'd make me feel extremely alienated. Not only that, but it'd make me look at my disability as if it were huge, nobody else would accept it, and it made me excessively stupid. So I wasn't "normal" enough to go to regular school. In other words, it'd mess up how I looked at myself forever.

In "regular" schools, there are aids, and nurses of sorts that can help with whatever she may have. Whether it's something physical, or learning wise. You can request to have somebody help. Nobody's forcing anybody to do everything. ie. I was never forced to do things in PE I was uncomfortable with. It's a matter of talking with the school and setting something up that works for you. Some of those aids are actually very nice, and a misconception is they'll do nothing, or they'll do all the kids work. Some don't and do. However, there are many that are trained and licensed to do what they need to do, and there are also many that will help the child LEARN instead of doing everything for them. Again, it's a matter of talking to a school to set something up that suits your needs.

Maybe I'm wrong, maybe there's more to the puzzle. But it really hits a nerve when stuff is said like how you've said it. It makes me feel inadequate.

[BraeleyEliz]

Sorry, I should have clarified a little better! Our daughter is using a walker and she seems to be doing fine. In fact, the PT says she should eventually be walking completely without it. Intellectually, she seems to be doing OK- we don't have any other children to compare her to, but she is catching on pretty quickly to everything she is confronted with.

Regular schools v Special Ed- this is where I guess we hit a nerve. Let me explain one thing- WE WANT OUR CHILD TO BE IN REGULAR SCHOOL MORE THAN ANYTHING IN THE WORLD!

But, we know she is, atleast initially, going to need therapy in school. Both OT AND PT. Right now, she is too young to guage intellectually, so we would just be guessing there. Also, we catherize- and she is not old enough to see if she, can or will catch on, to do it herself-initially. Finally we need to move now and wanted to make sure we cover all bases, regardless on what we think she MIGHT eventually be in(regular school). Although it is definitely something we consider in our decision of schools, we are just not confident enough yet to make our decision primarily on just the regular school.

[angel]

In most if not all schools now PT and OT can be provided as many children with SB recieve this in regular schools. Arrangments can also be made as to having someone help her cath until she can do it herself when she is older. I also agree with the rest that regular school will give her better opertunity than a special school however I do respect the fact that it is your decision. When I started kindergarden I was put in a regular school with everyone else. At the begning of first grade the school mentioned that they were just going to put me in special ed. I guess they figured if my legs didn't work my brain must not work either. My mom said you WILL test her and if she needs special ed fine if not leave her alone. I scored just under the gifted level. It would have been unfair to me as my education would have been ruined. I also credit being thrown in with the other kids with helping me to learn how to keep up in a world that won't wait for me. I learned lessons that I never would have learned anywhere else. Because of that I am a strong, independent woman who can make her own way.


Angel

[Dodger67]

Umm... The kid is only 2.

[NerdaliciouS]

You have more than enough time. -_-

[jellolegs23]

I agree with what everyone else has said, you can find services in a regular school to do all those things for her. In the meantime, try teaching her to do some of these things on her own before she gets to be school age ready. Parents need to treat their special needs children as if they were not disabled and have to teach them how to be independent, just like you would teach any other child. We may need alternative ways of doing things (i.e. walker, catheterization, PT, OT), but we still make the same milestones as anyone else does.

If the parents fail to teach their special needs child how to be as independent as possible then that is DISABLING the child more than the Spina bifida ever could. In Social Work, we call this "Learned Helplessness", the child literally learns from experiences and from what they were told from other people that they are more helpless than they actually are. If you believe you are helpless then you "become" what you believe. And unfortunately, I have seen many disabled people have this happen to them.

I think what you need to do is find a school that is willing to work WITH your daughters needs and legally they are all supposed to under the Americans with Disabilities Act (ADA), with the exception of private schools, but some schools will do more for her than others are willing to do.

Here is a link to the government webpage to familiarize yourself with all the rights and limitations the Americans with Disabilities Act has afforded many disabled Americans. http://www.ada.gov/. I hope this helps :)

[jellolegs23]

Oh, I also forgot to tell you, you can look up your state's local Spina bifida Association Chapter and ask them what they can find out for you too. Just google Spina bifida Association and then you can look at each individual state's association information.

[LillyPie]

Lilly is in Pre-k this year, because of the no child left behind act public schools are required to provide free pre-school for a child who needs services such as PT, OT and ST or any type of learning disabilities. Most of the kids in Lillys class are there for ST or OT and were not born with anything like SB. (there is one boy in her class with SB and him and Lilly are good buddys) You should be able to have her tested as early as 3 in your school district by calling the number listed in your area for public school special education. They will test her and an IEP will be written up for her with all of her needs. They also add in to the IEPs latex allergies, shunts (so they dont use strongs magnets), constant falls and so on. Each IEP is specificaly disigned for each child. Lilly will be going to regular kindergarten next year because her teacher knows she can handle it. Whats great is that with the IEP you can send her to any public school in your area, not just the closest public school to your home. Its a good idea to check out schools if you are planning on moving. Not all schools have these programs, so if that is what you decide.. find out which ones do. The program in my area is called Child Find, IDK if thats what they are all called all over the US but its worth it to look into. Lilly receives her PT and OT at school and she loves it! She gets and hour of each every week, the PTist and OTist go right to her school. And cathing at school, thats what nurses are there for, not just bumps and bruises. The nurse at her school is awesome. They also develop an emergency evacuation plan for your child that has specific details about how your child exits the school if there is an emergency and an emergency package (they requested me to take in with catheters, diapers, change of clothes etc). I know its scary to think about your baby going to school and dealing with other kids who dont have SB. I was scared that she would be pushed down, teased, ignored, or isolated. But she is doing so well and my fears have been proven to be........ just me being a worry wart. There was an issue at her 1st school but a filed a complaint, it was proved that my complaint was valid and we moved her to another school about 2 miles away and have not had any problems since.... I thought about specials schools too, dont get me wrong, but it was my own fears that caused me to think that way. Ive learned that its not about my fears or wants or needs... its about Lillys, because she really doesnt fear a darn thing when it comes to school or classmates. And now, I wouldnt have it any other way...:fyi:

[LillyPie]

Oh and I want to add that I understand both sides of this story...the feelings of a parent of a child with SB are ***A LOT*** different than someone living with it. Parents want to protect their kids and sometimes trying to protect them too much is something that we have to learn on our own not to do. We dont know what its like to live with SB....I do know that one major responsibility of being a parent is to protect your kids and its a natural mothers instinct to do so... sometimes we fail or make mistakes but we shouldnt be made to feel stupid or misinformed when we do!

[jellolegs23]

Hi,

I want to clarify Lillypie's last point. It is not our intention to make anyone feel stupid or misinformed when someone makes such a mistake. It is merely my intention to inform new parents that these things do occur and to watch out for them and that there is serious reprecussions to the child's development if it occurs. If there was anything other than that implied then I apologize. And Lillypie, you are correct that it is a parent's job to protect the child but it is the ultimate goal of the parent to have an adult child who is independent and well-rounded regardless of disability. We are not going to get any breaks in the real world just because we are disabled and parents have to prepare us for that, so that we are ready and able to take on the real world when we enter into it. The real world doesn't care that we have a disability and things are harder for us, the real world still expects us to live within the same rules, regulations, expectations, as any other adult. You want to protect the child but not accidentally hinder their development. I am sorry if that sounds cruel, heartless, and callous, but so is the real world, try living in it without the proper tools to be self-sufficient.

[jellolegs23]

sorry I realized after I made my last post how it may have sounded. I don't mean to be cruel or cocky in what I am saying. The only thing I am trying to get across is that it is almost impossible for the adult special needs child to live self-sufficiently if the child is not taught these things and the family just does them for the child automatically because its easier for the parents to do it for them. I realize it may be hard for a parent to see their child struggle but that is how we learn and grow.

[NerdaliciouS]

I think we all, or at least I know, that parents want to protect their kids as much as possible. I just don't like how things were phrased and I like putting in my point of view because I do deal with it! :D I think anybody can understand that, though... Right?

[LisaJoy]

BraeleyEliz --

So glad you decided to jump in and ask for help! Hope you aren't too put off by the strong opinions expressed here, but if you've been lurking for two years, you probably know the personalities on this site pretty well.

You are right to be looking into this now; it is not too soon, especially if you may need to move anyway. I'm assuming you're in the US, since you haven't corrected anyone making that assumption. The others are right --- under the Americans with Disabilities Act, as well as IDEA (one of the education acts; can't remember what it stands for), your daughter is entitled to an Individual Education Plan and to full access to a free public education in any community. However, we all know that some places (and even individual schools) do this better than others. Some states are better than others, and within each state, some school systems are better than others.

If I were in your shoes I think I would investigate school districts by asking questions about their inclusion policies, instead of about their special ed classes. You want to know the district's attitude toward children with disabilities and one way to get at that is to check out how hard they work to be inclusive. Do they seem to be proactive in placing as many children as possible in regular classrooms? Do they have a clear system for arranging for PT and OT services? Do they freak out at your questions about nurses providing catheterization, or do they seem to have answers to your questions right away, without having to go look it up or investigate? Do they start off by trying to pressure you into putting your child in a special class or school without even testing her first?

Despite the uniformity of federal law, there is wide divergence in practice. Many school districts try to segregate all children with disabilities (of whatever type) simply because it is cheaper than inclusion. Many school districts are eliminating school nurses to save money -- they would still be required to provide catheterization services, but will be much more likely to resist it if they've gotten rid of all the nurses.

I hope this is helpful. It comes with my usual caveat -- I'm not a parent, therefore I'm giving advice on something I have no personal experience of! I have sb, but when I was growing up, there was never a question of putting me in special ed; I was fully ambulatory and did not need any special services. And I was 11 years old by the time the Education for All Handicapped Children Act was passed in 1975 (the precursr to IDEA and the law under which the suit was filed that resulted in requiring school districts to provide catheterization).

[Gymp]

When I went to school in the 1960's and early 1970's there was no special anything,I fit in alright,made some great friends and have some fond memories of those times.

Gymp

[LillyPie]

Jellolegs

I understand what you are saying. I agree that any child even children w/ out SB need to become self reliant and independent. One thing I want to emphasize is that is hard for parents to not worry. And it is important for other people on this site to realize that parents do not feel the same way as someone living w/ SB. No ifs, ands or buts. When Lilly is an adult and has gone through adolecence and school and maybe even relationships I will never be able to fully understand what is was like for her. She will at some point in her life understand how it feels to be a mother and understand a mothers ways. We have been through more than our children will ever realize and we will have done it all with love for our precious babies that Drs told us would NEVER do much, that we should terminate, that our babies would never walk... Now excuse my french... but that F**king scared the shit outta me... but I never considered not wanting her... NEVER ... I made a commitment to raise her and be there for her no matter what obstacle and no matter how much I hurt in the process.. those are things that you guys (people living w/ SB and our own children) will never understand and I dont expect Lilly to or anyone else for that matter. Now that may sound harsh as well but there is no way around it. So please dont expect us to understand everything off the bat... That is why we are here .... right... to gain understanding and educate ourselves about our children.... at least that is what I am here for... I just dont like to see anyone being "harsh" just because a parent doesnt get it yet... Will we all at some point get the fact that we cant protect too much? YES..in our own time.. so dont get angry with someone for not getting it, you may also not know what its like to live in our shoes either..... I think most of us do not want anyone to have a pity party for us or our kids, we also just want comfort in learning and having conversations with others that do not critique us for not doing it the way they would do it or think it should be done... ya know? I agree with you all though, that a "special" school is not necessary in most cases of SB but did anyone stop to think about why a mom would consider it itstead of knocking her for it? Most of us are scared of course but, mainly I think because this is what is told to us when we are pregnant and by PT's and generaly people in the medical field... I learned a long time ago that most people in the medical field know horse shit about SB and its effects.... I pick and choose the information I receive from any health care professionals.. out of being misinformed too many times, not only with Lilly but my other kids as well... Sorry for the long post but I just want others to know its not just black and white.. there are a lot more about us parents and our feelings and fears than people may see... There is a poem that someone posted on here that offers some insight on those feelings and fears....

[jellolegs23]

Lillypie,I am sorry I have angered you, I never meant to come across in such a manner. I was just telling everyone my experience and I am sorry it came across that strongly. I will just be quiet now.

[LillyPie]

No... dont be quiet... we are conversating and that is normal... I just like to also put my two cents in.... I'm not angry with anyone :happy065:

[jellolegs23]

Lillypie,

Right back at you. :happy065:

[Lifeisgood]

Welcome BraelyEliz! Glad you are with us!!! :D

[NerdaliciouS]

Lillypie is right! I just wanted to say that, lol.
It just gets frustrating when some people CONSTANTLY talk and do things like the OP did. I can understand not knowing exactly yet, or whatever exactly, but sometimes it hits a wrong cord. After you've dealt with people making a big fuss out of it for nothing or whatever, it makes me wonder, lol. But yep. Sorry about that! But the way you worded it did kind of bother me. I still say talk to the schools when you're ready.
Dummdeedummm :Banane21:

EDIT: Though, I am still kinda ...ehhhhhhhh about it... It still bothers me. o_o

[angel]

I just wanted to say that you both have very valid points. I have said many times and will till the day I die that parents have it harder than the kids do in my opnion. I have it and know what it is like to live with it. My son has a lesser form of it however he still has some of the same issues. Knowing all that I know about it and how to live with it etc..... It is still hard as hell as a parent. The hardest thing for me is knowing what I know, knowing that I have to back off sometimes when every fiber of my motherly being is aching to step in and "help" him. I don't want him to get the bumps and brusises that life is going to give him but I have to litterally bite my tounge sometimes and FORCE myself not to get involved because my brain knows that he has to do this to mature into the independent adult that I am determined he will be.
I don't think anyone means to be harsh however it is very difficult to understand sometimes when you can't hear tone and see facial expression. Some of us with SB have seen the horrible affects that some have faced because of the overprotection. It hits me in a spot because had I not been so stubborn and had my mother not done things the way she did the rest of my family would have turned me into a completly helpless person, all out of love, thinking they were doing what was best for me. I have no doubt it all comes out of love.
I am glad to see y'all worked it all out. We have a great group here and it shows.

Angel

[jellolegs23]

Yes, I agree this is a great group!

[Dodger67]

BraeleyEliz
Thanks for starting this topic. :happy065:

When a conversation gets this passionate I know why I am part of this.
I love this group!
Logging in here is the second thing I do every morning after I wake up.

[Papillon]

Since I am 32, I'm talking quite a while ago, but I went to a mainstream ('normal') school for both Primary and High School. I didn't go to my local public school where my brother and sister would go later on, because they felt they could not cope with someone with the mobility issues I had, but a local Catholic School took me in and treated me the same as everyone else (while adapting some equipment/tasks/classes so I could take part), I did go to the same High School as all the local kids including my siblings. I had someone come in and help me catheterise for the first few years of Primary School, not sure exactly how many years, but eventually I was able to do it myself, before High School (which here in Australia is from age 12 or 13).

I needed help to get up and down stairs, so they had a machine that my wheelchair clipped onto and it had caterpillar tracks and someone stood behind me and controlled the machine - that was in Primary School and at the beginning of High School, then they installed a platform lift thing that went up the hand rail that I had a key for so I could operate it myself. Now, in 2010 they apparently have a lift/elevator!!!

I did get some extra help with English for a while (comprehension has never been one of my strong points, neither has essay writing which is a necessary evil at school), and I got extra time in exams because I am a slow reader and as mentioned above my comprehension skills and essay writing skills were not up to the level of my peers, and I also had issues with friendships every now and then, so saw the school counsellor a few times for help with loneliness/making and keeping friends.

Since I finished school in 1995, I am SURE things would be better and people would be more willing to make the changes necessary to have your little one attend when the time comes - after-all, as you say, she is only just over 2 years old!

Let us know how you get on.

Love Papillon

[fran]

Wow! After reading all of these replies I have tears in my eyes and can hardly see to type! I have so much to learn. I am afraid that I too feel way over protective of my daughter. I have been wondering about school as well, I just want the best for her. My daughter is adopted and her mother was told she should have a humane abortion due to poor quality of life. Thank God she had this baby but I have felt it is my job to ensure she does NOT have a poor quality of life. I love her so much and I want her to be happy. I have biological children who do not have any disability and we want the same for all our children...that they are happy and have the opportunity to be the best that they can be. Those of you who have Spina Bifida are such a valuable resource for us new moms, just keep telling us, our children will benefit from the advice you give us.

[angel]

Papillon,

It is cool having someone on here the same age as I am. You said you finished school in 95, I finished in 96. I know we are on opposite sides of the world but it's still cool :)

Angel

[LisaJoy]

Papillon, I would not guess that you have problems with writing essays judging by the way you write on here! I think you write very well -- way better than most of my college students.

[hope&faith]

wow, this was a very powerful thread. I have to say this is just one reason why this site (and all the people on it) is so valuable. Its absolutely beneficial to have the knowledge and experiences of those living with SB as us new parents are trying to charter the unknown waters of this journey. I think emotions on both sides can be pretty high.

Alex is only 11 months old and developmentally months younger due to his prematurity and I'm already stressing about what the school experience will be like for him. I don't want people to pity him, pick on him, etc. I already have found myself *wanting* to help him more than I might do for his twin because mobility differences are already presenting. His brother is cruising all over the place grabbing whatever toys he spies, while Alex is left behind a bit, unable to move around anywhere near as much and I catch myself wanting to just bring everything TO him. Its sooo hard watching him have to already work harder than his twin. But Alex is sooo strong, such a champ and I know that with motivation, he WILL figure out how to move more in his own way whatever his abilities are and I need to let him have this drive. But honestly its the hardest thing I've ever felt perceiving this struggle and not wanting to just make it better/easier somehow for him as his mom.

I know that in many of the same ways school will be like this. I'll have to watch him struggle a bit physically or emotionally and it will probably be harder on me more than him in many ways. But as others have reminded us, we ALL have struggles in this life with or without SB and its in those struggles that help us grow. We need those (gentle) reminders. thanks, Holli

[Papillon]

Papillon, I would not guess that you have problems with writing essays judging by the way you write on here! I think you write very well -- way better than most of my college students.

Thanks LisaJoy! That's a big surprise to me, since I did not get into University after school because of my poor marks in the final exams (or rather good marks in very low level subjects, which pulled my final Tertiary Entrance Rank mark down), could have gone to Uni later on as a 'mature aged' student, but I didn't want the stress, so never bothered. I went to a 'Technical College' (called Technical And Further Education (TAFE) here) after school, which did not require high High School marks and did a secretarial course. Hardly any (if any) essays in my courses at TAFE, and OK exams, much more like school than university.

When I write e-mails or messages on here I can read and re-read them and take my time writing them so that I think they'll make sense to the people reading them. When I was at school writing exams there was a strict time limit (even if it WAS a little longer than my peers' time limits each time) which added extra stress to the already stressed situation, so I would get all muddled up, running out of time to write my 'plan' for what I needed to write, and not having enough time to read over it before time was up. I HOPE I will never need to write another essay in my life!!