School district witholding aquatics therapy to daughter

[Alexia]

My daughter is 8 and has been going to adaptive aquatics therapy for 5 years now. (Since she was 3 years old). By sheer luck she had not had a seizure there until this school year. The first one occured in the water, they pulled her out of the water and after about 5 minutes she came out of it. Nothing out of the norm for her. She is always in a flotation device and with 1:1 supervision in the water. She averages 1 seizure every 7-10 days and has a VNS. About 1/2 the time the VNS does not work and she requires the Diastat. The school nurse at the aquatics center freaked out! The nurse said she could not come back to aquatics until we got a new physical form signed by the neurologist. (We already had one on file from her pediatrician). It wasn't good enough. She said "the neuro should know she's comming here". Like we were doing something sneaky! So I took the form to the neuro and he signed it (didn't even look at the form, I filled it out). Two weeks later she goes back, she has another seizure while loading her back on the bus to return to school (not even in the water). They did not follow her seizure action plan which the nurse fussed about not having the last time. They waited 4 1/2 min called 911, then used diastat. The seizure lasted 10 min. They should have used diastat first. They sent her to ER without her 1:1 aide who is supposed to go everywhere with her. They sent a teacher who did not even witness the seizure or know my daughter.

Now they have suspended her aquatics therapy because she is "too unstable" to quote them. We ask what is it that you consider to be stability? They have no answer. We have a note from the neuro saying she can swim with proper supervision and flotation device. They say that because she had two seizures there that she is unstable. Never mind that she went 5 years without having a seizure there. Her seizures have not changed and have been pretty consistent.... about every 7-10 days. We are used to that pattern and do not stop giving her baths or take her swimming because she "might" have a seizure. The other thing is that they are not concerned about her being on the school bus for 30 minutes every day without a nurse present. But at the aquatics center there are 3 nurses, lifeguards, and aides present at all times. So they must not be that concerned about a seizure occuring on the bus. I am so angry about this. Aquatics therapy is one thing that really benefits my daughter. If not I would not push this. We have an advocate helping us with this issue and have had an ARD meeting and "discussed" this for 2 1/2 hrs and came to no resolution. They also want us to pick her up from school after each seizure if she sleeps more than 1-2 hours, and if she gets diastat they insist on sending her to the ER even though the seziure stops. It's their way of forcing us to take her out of school for the rest of the day. Now I don't expect them to let her sleep all day. I would like for them to try to get her up after 1-2 hours. And I don't want her being put on a bus if she is still sleeping. However, if she has a seizure at 9:00 am and we have to take her home she misses not 1-2 hr of school but the whole day. When she gets home she is wide awake. They say she needs to rest the rest of the day and should be at home. I'm sorry this is so long, I just wanted to highlight all that has been going on. I really feel like they are denying services to my daughter because of her epilepsy. I just wanted to get input from others. Does this kind of discrimination happen often? We are in our 10 day recess and meet again in a week to see if the school district will reinstat aquatic therapy. Our neuro is behind us, and the teacher and other therapists are supporting us (as much as they can of course). The ones holding out are the school nurse, and the district level nurse (who by the way looks like she did her nursing training before Pennicillin was discovered)!

[AncientWolf]

I'm sorry to hear about the problems you are having with your daughter's school. It is unfortunate that through ignorance and legal/insurance fears people tend to over-react to epilepsy. With your neuro on your side there should be no further question by the school. I don't know if there is another school that will do better for her or if there is a legal option available for you to pursue. Hopefully someone else here will know the legal aspects of all this.

Whatever happens I wish you and your daughter the best.

Peace,

Daniel

[Lindybuzz]

Are your daughter's services covered by an IEP or 501 plan? If they are, the school cannot legally change them without a new plan in place that you have signed. My children are both grown now but I remember the discrimation and horror we went through, trying to get an education for our son (who is severely dyslexic and has a moderate to severe speech/language disorder). Your child has very specific legal rights and it doesn't sound as if her school is obeying the law. Schools count on parents NOT knowing their children's rights and it is vital that you know as much about the law and what your child is entitled to as possible.

[lor]

I feel so sorry for your daughter & all young children with epilepsy, mine didn't start till age 12 & most occured at home. The misunderstanding of others is what hurts. If she has someone with her I see no reason why she can't go in the water (they must be thinking of some sort of legal thing, but what could go wrong in the first place :confused:) What I mean by "misunderstanding hurts" is that they could hurt her by not letting her learn. If she has a tonic-clonic sz. early in the day, yes, she will want to sleep an hr or so but then they must know she will likely be fine I think (I was, except for sore mouth).

[mercy]

Alexia I'm sorry that you're having to fight the school system so much. I think when I was in elementary school there were 2 different schools that would call my mom after a seizure and ask her to come get me. The schools were really good when I went to jr high and high school and didn't call. (I don't need diastat and hardly ever have a TC when I'm awake. ) When I went to college some profs would call security if I had a seizure. One phys ed teacher got me out of his biking class because I had a seizure on my bike and he didn't want me along when the class went for a bike trip from maine to Massachusetts. So this stuff has been going on for years, but I'd hope that maybe by now things would be better.
I hope you get things worked out with this school soon.
mercy

[Alexia]

Thanks for the support. I am dissappointed (maybe not so supprised) that this type of discrimination still happens. Advocacy Inc. has taken our case. I hope that it doesn't come down to a law suit. I don't want to be known as the parent who sued the school district. We have had such a good relationship with the school and teachers. I still feel like the teacher and the therapist working with her are supportive of us, they just can't openly express it because it could adversely affect their jobs. This has become a district wide issue now. They are changing policies regarding the aquatics program. I have talked to other parents of kids with seizures who have stated that the changes are affecting them because of an "incident" that happened at the aquatics center. I think we have a strong case. Our neuro has been in contact with the district Medical Director. According to our neuro this is all about liability and risk reduction on the part of the school district. I don't see them backing down easily. Our neuro thinks what they are doing is rediculous. Wish us luck. Next week is our ARD.

[Porkette]

Hi Alexia,
I work in public school as a teacher aide in special ed. and take my word the school is breaking the law by not letting your daughter have therapy. When I was in jr. high my school gave me a hard time because I had so many sz. (absence and cp) in a day that they kicked me out of the school for 3 yrs. and I had to go to a boarding school out of state and live there.
My best advice to you is to get ahold of the Epilesy Foundation and report the school by doing this they will have one of their lawyers come into the school and check things out without the school realizing it's the Epilepsy Foundation and then they will be in a lot of hot water legally from the National Education Association (NEA). This is definitely discrimination which is totally wrong.
Don't back down from the school or the administrators many of them have turned schools into a business and politics where they could careless about the students.
Here's wishing you and your family the best of luck and May God Bless You All!

Sue

[lamac]

Alexia...good luck with this...a lot of good information here...Like Lindybuzz mentioned...what does your daughter's...(wish I had her name) IEP say? The district MUST follow that and if they don't, or if they change it, there must be a meeting with the entire team. Also, my school sends kids to the nurse for a variety of reasons and they call her a nurse, but her title is Health Assistant. Our district needs to have a specific number of nurses but each school does not require a nurse. Several have the assistants who are supervised by the nurse. It may be different state to state...

Lamac

[Alexia]

They are being so rediculous about all this. The aquatics therapy is part of Adaptive PE which is listed in her IEP. The place she goes has 1 RN and 2 LVN nurses on site all the time, plus lifeguards and she wears a flotation device and is in the water with an attendent. What could possibly happen to her. She is much more at risk of complications from a seizure while riding on the bus after school when there is no nurse or diastat available to her. They are not insisting she not ride the bus, and they are not insisting that a nurse be on the bus with her either. We have our next ARD on Nov. 9th. Common sense tells me that they will see how rediculous they are being, but in reality I can see them saying no and us having to get lawyers involved.

[EarthMonkey]

The question is whether in the adaptive PE section of the IEP the aquatics therapy is specifically listed as part of adaptive PE. If it is listed legally the district would have a hard time getting around it. If it is not listed specifically (i.e. 30 minutes of aquatics therapy weekly goal to be able to move arms across her body) the district will most likely be able to substitute something else that would be considered by the district to work to reach that goal. The supreme court ruling which sets the parents as responsible for proving the district is not supplying proper means to reach IEP goals would support that.

[Linda25]

I don't want to be negative, but there was a very sad accident that occured in CA back in about 2001 and these kinds of accidents may be why your district is being so strict

A preteen girl with epilepsy who did have a 1 on 1 aid and was surrounded by teachers, life guards and other children at the public pool had a seizure and drowned in a matter of a minute or so.

It's hard to imagine that something like this can happen with so much supervision, but freak accidents do happen

I'm not saying that your daughter shouldn't have therapy, but I think the school district may also be having some serious safety concerns. Even just one dead child is not acceptable

good luck to you, I hope a good solution can be found

love,
Linda25

[Alexia]

Her father and I are even willing to go to the aquatics session and be there with her while she is in the water. It is scarry that those things can happen. It could happen right here at home in the bath tub. Lord knows she has had her share of seizures in the bath. We have to have eyeballs on her at all times when she is in there. But as I told the school district ... you can't stop living your life because she might have a seizure. I'm sure I'm preaching to the choir here! I could go out and be in a car accident at anytime. That doesn't stop me from driving to work or other places. I am 100% certain that the school district is only concerned about their liability in this matter. There is nothing else to this for them. Their arguments are only excuses. They don't want to come out and say.... "we don't care if she has a seizure or not we just don't want to get sued". Instead they hide behind..."we only are looking out for her best interest and safety". I know there are other kids with seizure disorders who are being allowed to swim. Why are they singeling out my daughter? And it can't be the first time a child has had a seizure during aquatics. This school district is the 4th largest in Texas. The numbers would dictate that she is not the only child to have a seizure in the aquatics center.

[Linda25]

I would think that if you or your husband were there they couldn't have a legitimate reason to refuse. I'm sorry you are going thru this, must be VERY frustrating

good luck
Linda25

[lamac]

Alexia...I work in a school district smaller than yours...we have about 6000 students in the entire district....1,600 at the highschool where I work. I am at every Special Ed. meeting...you hit the nail on the head when you said that you feel the district is only concerned about their liability in the situation.
This district has been sued in the past and we have been told many times, from administration that they don't want to go through that again. I am sure that if anything happened to a student they would be concerned for the family and it would be difficult for those that work directly with the student...but...the main concern at the top is the responsibility...not the fact that the student loves and benefits from the therapy sessions.

good luck with this,

Lamac

[J2636s]

I was a teacher for almost 30 years. The district is in violation if the aquatics are specifically listed in the IEP. The very best thing you did was to get an ADVOCATE involved! School districts do not like to give advocates a tough time... they have strong legal ties and are very vocal. Don't be worried if it does come to you being the parent "who sued the district"... guess what, it probably occurred before.... many parents sue districts. The only thing you may have to do is actually sign off on her being in the water, as there have been deaths in pools - not only from kids with E, but just plain freak things [a HS kid around here died of a stroke in the pool - no preexisting helath concerns; the district was sued and the parents collected.... I don't see how.. it was a freak occurrence and it could have been anywhere; just so happened he had the stroke and did swallow water before he was immediately taken out of the pool, so they argued the lifeguards didn't care]... this is definitely the school worrying about liability.

Fight for your kid!

[Alexia]

We had our meeting. It was down to the last minute to where I thought they were going to say no she can't swim. At the last minute the medical director for the district and our neuro had a long talk (about 4:30 the day before our ARD) and they decided to let her go to aquatics. I am so glad we did not back down and had an advocate with us. I probably would have let it go if the advocate had not been with us for support and advice. That's one thing I learned is how to be a stronger advocate for my daughter.