Please help me with the logistics of DD on the bus with special needs

Mommy0608

New member
DD wants to ride the bus to Kindergarten. She's 5 years old, 44" tall and 34lbs. She has epilepsy and someone with her needs to carry her emergency medication (Diastat) at all times. DD can not be trusted to carry it herself, nor do I think they'd allow her to. When she has a seizure, she falls limp and would therefore fall out of her seat, hence the harness requirement. Harness use has been written into her IEP. The district has the STAR seats available for preschoolers (and presumably for older kids with special needs).

I need to contact the bus garage to figure this all out, but I'm not exactly sure what to ask for or expect. They seemed a little annoyed to have to deal with this when I spoke to some transportation representatives at Kindergarten Round-Up. When I mentioned that she'd need a harness, they just said, "Oh, we don't do that for elementary kids" even when I said she had a stipulation in her IEP that includes harness use on the bus. At her IEP meeting later on, the district's Director of Special Education had no hesitation recommending harness use be written into her IEP, so I know they'll have to do it whether they like it or not.

So... do I ask to set up a time to get her fitted for the harness and to show her how to use it? If she does ride the bus to school (still not exactly sure, depends on how this all works out), do I board the bus each morning to buckle her, or will she be expected to buckle herself (she'd only be riding to school, I am picking her up for sure)? There are no aides on the bus.

Second, what do we do about the Diastat? Do I send one to school for her teacher and one to keep on the bus? They are $450 each to replace, I don't want them just floating around. Also, it has to be kept within a certain temperature range, and therefore can not be left on the bus in the winter or late spring/summer.

What if there is a substitute bus driver? What if the driver doesn't notice her having a seizure? What if DD wants to know why she's the only kid in a harness?

I'm beginning to think I should just drive her to avoid all of this, but poor DD just wants to be a normal kid and ride the bus like everyone else. She doesn't understand that she has seizures or even what they are.

Anyone have any tips or ideas of what to expect or ask for? I don't want to be "that mom" but I fear that I already am.
 
ADS

safeinthecar

Moderator - CPS Technician
First off, I think it is really important that she learn and understand all about epilepsy.

Second, who at school is trained to administer her meds? I'm assuming that it is very specific people considering how Diastat is administered. Those people should have the med with them.
 

safeinthecar

Moderator - CPS Technician
She should have an aide on the bus that can get her into the harness and that knows how to use the diastat.

I'm not sure it's quite that easy in this situation. Diastat is administered rectally, so I'm not sure that an aide could give it to her on the bus at all.
 

jess71903

Ambassador
I'm an OT, so I'm all about kids with SN being allowed to do normal stuff whenever possible.

Honestly, though, in this situation, I think you driving her is the best solution. Even if the driver is willing to keep up with her drugs, I'm not sure I'd trust him/her to, especially if they aren't happy about the harness to start with. I think the bus is something that all kids think will be cool when they can't ride it, but the new wears off. I also think her being the only one in a harness will negate the "I wanna be normal" part of things. It's not like she will be the only car rider.
 

Dillipop

Well-known member
I'm not sure it's quite that easy in this situation. Diastat is administered rectally, so I'm not sure that an aide could give it to her on the bus at all.

I didn't know that. However, as a child with an IEP, she is entitled to safe transportation to and from school. If having an aide that is trained to administer her seizure medications and gets her on and off the bus is what keeps her safe, then that is what the school should be providing.
 

Mommy0608

New member
First off, I think it is really important that she learn and understand all about epilepsy.

Second, who at school is trained to administer her meds? I'm assuming that it is very specific people considering how Diastat is administered. Those people should have the med with them.

I've tried to tell her about it and she just looks at me with this blank stare and doesn't get it. She looses consciousness, so she really has no recollection of anything happening, other than when she comes to and is surrounded by people (some of whom are freaking out, depending on where it happens - other people at the library, for example :rolleyes:). I don't know how to explain it in a simple way that she'll understand.

As for who is trained at school, I was told at the end of last school year that there would be a team trained in the recognition of her type of seizures and administration of Diastat. I'm a little uncertain about whether there is a school nurse available at all times, or if the nurse is shared between buildings. I need to find out what this plan is and who it involves. Her ECDD preschool teacher last year was involved in developing the plan for this year, and told me it would involve teachers carrying walkie talkies to relay the message to whoever would be administering the Diastat when she has a seizure. She will have one classroom teacher plus specials teachers (gym and music) as well as her OT (same person she's been seeing since she was 2). I guess if there is a substitute teacher, her info will be listed in the sub plans, and the sub will have the walkie talkie to summon help if she has a seizure. When she has one, another adult will take the rest of the students out of the classroom.

She should have an aide on the bus that can get her into the harness and that knows how to use the diastat.

I thought about asking for that at her IEP but didn't... I wasn't sure if that was going too far or not.

I'm not sure it's quite that easy in this situation. Diastat is administered rectally, so I'm not sure that an aide could give it to her on the bus at all.

Right, I'm not sure how/where it would be administered in a bus. She is tiny though and could likely be laid on an empty bus seat.

I'm an OT, so I'm all about kids with SN being allowed to do normal stuff whenever possible.

Honestly, though, in this situation, I think you driving her is the best solution. Even if the driver is willing to keep up with her drugs, I'm not sure I'd trust him/her to, especially if they aren't happy about the harness to start with. I think the bus is something that all kids think will be cool when they can't ride it, but the new wears off. I also think her being the only one in a harness will negate the "I wanna be normal" part of things. It's not like she will be the only car rider.

Yeah, I keep going back to this thought myself. :( I'm not sure I trust that it will be handled properly on the bus.

I didn't know that. However, as a child with an IEP, she is entitled to safe transportation to and from school. If having an aide that is trained to administer her seizure medications and gets her on and off the bus is what keeps her safe, then that is what the school should be providing.

That was my first thought too. However, I hate to be "that parent" that everyone rolls their eyes at. :eek: On the other hand, you're right, my DD is entitled to safe transportation like all of the other students.
 

Mommy0608

New member
So if I do end up driving her to school every day, there is still the issue of field trips. In this case, her teacher would be on the bus also, and could probably sit next to her. Her teacher would have to be trained to administer the Diastat though, since I assume the nurse won't be coming along on field trips. Last year her preschool teacher was trained to administer it.

Would you still push for a harness in this situation (field trips only, teacher sitting next to her)? My thought is that yes, I'd want her harnessed anyway.

Her seizures are infrequent and pretty well-controlled with daily medication. Her last one was in March. None of her seizures have ever required Diastat (knock on wood!) It is used for seizures lasting 5 minutes or longer, and we've gotten close, but never exceeded 5 minutes.
 

ketchupqueen

CPST and ketchup snob
Staff member
Yes, I'd want her harnessed on field trips.

My mom gave Bridget an absolutely excellent explaination of what a seizure is, and when the child life specialist heard what she'd been told she said, "I'm using that..." If you'd like to hear it I'd be happy to share. I think she does need to understand what a seizure is, and that if she has one on the bus she might not be safe, etc. and that's why she needs the harness/needs to ride the car/whatever.
 

Mommy0608

New member
Yes, I'd want her harnessed on field trips.

My mom gave Bridget an absolutely excellent explaination of what a seizure is, and when the child life specialist heard what she'd been told she said, "I'm using that..." If you'd like to hear it I'd be happy to share. I think she does need to understand what a seizure is, and that if she has one on the bus she might not be safe, etc. and that's why she needs the harness/needs to ride the car/whatever.

I would love to hear what your mom told Bridget... everything I've tried hasn't worked at all. Thanks! :)
 

Patriot201

Car-Seat.org Ambassador
:I thought about asking for that at her IEP but didn't... I wasn't sure if that was going too far or not.


It isn't going too far. IN fact, there should be a part of the IEP that addresses special transportation and transportation needs. If needed, get an addendum written.
 

ketchupqueen

CPST and ketchup snob
Staff member
I would love to hear what your mom told Bridget... everything I've tried hasn't worked at all. Thanks! :)

Ok. :) Here goes.

So, when you ride in the car, there is the car, and there is a driver. The driver is in charge of the car, where it goes, how it moves, when it goes and stops. Your body is like your car; it takes you places, does the things you want to. Your brain is like your driver.

Sometimes some people have something called a seizure. When you have a seizure, your driver loses control of your car. Because your driver is not able to control your car, your car goes all over the place. The driver kind of falls asleep when this happens, so you don't usually know it's happening. You only find out later when people tell you.

The medications you take help keep your driver awake when it is at the wheel, and keep it from losing control of your car. Sometimes it might still lose control, though, and that's why the people around you need to know what to do to help you if your driver loses control of your car. When that happens, we have special medicines to help you, and will take you to the hospital if your driver stays asleep for too long, to help your driver get back in control of your car.

Because we never know when your driver will lose control of your car, we need to make sure that if that happens when you're in the car or bus, you are safe. Your harness makes sure that even if your driver loses control of the car, you stay safe.

I thought that was a great explaination that was on a level she could understand (she was almost 5 at the time.) :) I've added in the part about the harness to explain why she will need that in the car/bus longer than other kids.

(My mom also explained Emma's kidneys and bladder to her by talking about dump trucks and trash collection, lol. My mom kind of rocks.)
 

Mommy0608

New member
Oooh, that's great, thanks! I'm going to try it. She is very literal yet, and has a hard time with metaphorical ideas... we'll see. :)

Thanks again!
 

jess71903

Ambassador
I think going on the bus, in a harness on a field trip is a different ball of wax. Definitely get her teacher trained on her meds, and ask that she sit by your DD on field trips. It's not the actual bus that I think is the problem with her daily use of it, but the personnel on the bus. Keeping up and administering seizure meds is above a bus driver's pay grade IMO. It's something the teacher will be aware of all day every day, so she should be able to handle it.
 

skiersnowboarder3

Senior Community Member
I can only speak to the local school system here where I work but here, if a bus has a single child in either a harness or a wheelchair, there MUST be an aide on the bus. Because of this, transportation tries to lump special needs students together based on where they live and where they go to school. If you lived here, your daughter probably wouldn't ride the neighborhood bus. Anyway, the aide would buckle and unbuckle the harness each day. I'm assuming he/ she would be responsible for the medication as well.

Also, you had a question about the fitting of the harness. STAR harnessed seats are incredibly quick and easy to adjust to each student. There are clips that hold the shoulder straps in the correct place. These move up and down and are put right above the shoulders. The harness itself loosens and tightens down by the hips with two cinch plates. I'd probably go on the bus with her the first day just to make sure the aide tightens the harness properly.
 

Mommy0608

New member
I think going on the bus, in a harness on a field trip is a different ball of wax. Definitely get her teacher trained on her meds, and ask that she sit by your DD on field trips. It's not the actual bus that I think is the problem with her daily use of it, but the personnel on the bus. Keeping up and administering seizure meds is above a bus driver's pay grade IMO. It's something the teacher will be aware of all day every day, so she should be able to handle it.

Makes sense. Thanks!

I can only speak to the local school system here where I work but here, if a bus has a single child in either a harness or a wheelchair, there MUST be an aide on the bus. Because of this, transportation tries to lump special needs students together based on where they live and where they go to school. If you lived here, your daughter probably wouldn't ride the neighborhood bus. Anyway, the aide would buckle and unbuckle the harness each day. I'm assuming he/ she would be responsible for the medication as well.

Also, you had a question about the fitting of the harness. STAR harnessed seats are incredibly quick and easy to adjust to each student. There are clips that hold the shoulder straps in the correct place. These move up and down and are put right above the shoulders. The harness itself loosens and tightens down by the hips with two cinch plates. I'd probably go on the bus with her the first day just to make sure the aide tightens the harness properly.

We live in a small district with one elementary, one middle and one high school plus the early childhood center. I don't know if they'd have a separate bus for special needs students, but I doubt it.

I've actually installed and played with the STAR seat... I recently took the school bus class. ;) You're right, it's very easy to adjust and use it. I basically wanted to let DD see it and teach HER how to adjust it. I know she could tighten it up on her own, but she might need help getting the shoulder setting at the right spot. The district Special Ed director said there would be a designated harness on the bus for her and only her, so I thought it would be nice to get it adjusted (for the most part) ahead of time. Of course it would need slight adjustments for sweaters and such.
 

cat mommy

New member
Keeping up and administering seizure meds is above a bus driver's pay grade IMO. It's something the teacher will be aware of all day every day, so she should be able to handle it.

I would not feel comfortable with the bus driver near my daughter's naked butt. I would feel comfortable with either her teacher or a properly trained aide.
 

Mommy0608

New member
I would not feel comfortable with the bus driver near my daughter's naked butt. I would feel comfortable with either her teacher or a properly trained aide.

Yikes, I hadn't even thought of it that way. I have met the preschool ECDD bus driver and she's awesome, however, she won't be driving the elementary bus. I've seen the lady that drives the elementary bus that she'd be on and unfortunately she is one of the two we met at Round-Up who was less than thrilled about having her harnessed on the bus.

The more I think about it, the more I feel that I'll just drive her and let her ride the bus (harnessed) for field trips with her teacher on board. Now to get past the hurdle of telling DD she won't be riding the bus... she sees it go right past our house every morning.

So for field trip use only, should I contact the bus garage now to get DD familiar with the harness and teach her how to adjust it, or should I wait until field trip time?
 

Jan06twinmom

New member
I would wait until it's close to when DD will be going on a field trip. Then the arrangements can be made for her for a specific date and how to use the harness will be fresh in her mind. With cut backs, there aren't as many field trips.
 

Uzume2x

New member
How far is it to/from school?

Would there be someone on duty at school that could meet the bus within 3 minutes if a seizure occurred? Also, is there a sublingual rescue med that might work in the case of a seizure on the bus only? Several of my friends' children use sublingual meds instead of diastat. It's my opinion that they don't work as well, but it might be worth mentioning to your doctor.

At my school, the nurse goes on field trips whenever possible.
 

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