Going to school with a vent

[Alex's mom]

So my little baby is almost 3:cry: and will be starting preschool soon. So far everthing has been going smoothly and the school dept has been pretty great about getting prepared to meet Alex's needs.

I'm wondering if any of you whose vented kiddos go to school have some suggestions - some things you've learned along the way that work, or don't work.

She is dependant on the vent all the time and is on a continuous feed through her GJ tube. She'll have a nurse with her. I'm not sure yet if she will be taking the bus or if I will be taking her. I plan on having a basic stock of supplies that will stay at the school. Circuits, trach and g-tube supplies etc. I am ordering an extra "car" battery and charger to stay charged at the school. She'll have a school bag that has the same supplies as her "go" bag and her suction machine. She doesn't normally use O2, but I've always kept a small tank in the car and on the vent stand at home as a "just in case of an emergency". Should I have one at school too?

I feel as though there are things I'm not thinking of.....

Help...:)

[TommysDad]

The only other thing I can think of to offer you is, "Do you have an back-up plan for educational needs IF Alex should be come ill and start to miss school frequently?"

Also, does she already have a wheel chair & vent attachment? I thought she did, but if not, that all will probably be required for her to ride the public shcool bus.

Other than that, it sound like you've got things covered!!! Good job!:D

~Maggie

[Alex's mom]

Thanks Maggie. We are waiting to receive our wheelchair, the order came in but it's not assembled yet. We're hoping to get it next week. Do you have a wheelchair for Tommy? What kind is it? I called about the vent attachment after I saw your post. They don't think it has one, but I'm not sure yet if she will be taking a bus. If I take her in she will be riding in the carseat anyway and I'll toss the wheelchair in the back.

The details of the IEP haven't been ironed out yet, but therapy and education at home will be something she will need if it turns out there are long periods of illness or if she doesn't tolerate being out so frequently during the winter months.

[TommysDad]

Long post!!! (Tommy's sleeping and I'm waiting for Tom to bring home dinner:p )

Tommy has a Zippy. We made sure to order the shelf that sits at the bottom of the wheel chair. This was supposed to be for the vent. We also ordered an IV pole attachement and oxygen ring just incase he ever needed it again in the future, and a tray. It was the weirdest thing how the try attached with velcro. It stunk! The wheelchair guy purchased some other clamps which allowed the tray to clamp under the arms and released very easily on each side. We also had to get a "daisy mount" for his high tech talker to mount to. The "tray" was supposed to hold the vent, but it doesn't, but it sure does make a nice place for the suction machine. Our DME ordered a dove tail clip from Pulmonetics and modified the back of the wheelchair to allow for the vent to clip onto the back of the wheelchair. They wouldn't allow the vent just to hang off the back in the blue vent bag from Pulmonetics. They were too afraid of the chair tipping backwards or getting launched in an automobile accident. Thus the dove tail clip. If my memory serves me right, they took the oxygen ring hardware, took of the oxygen ring part and drilled then screwed the dove tail clamp into the rest of the existing oxygen ring hardware that was left. So now I guess if we need oxygen, we'll be pushing it along side of Tommy instead of it riding along with him and his vent.

The shame of all of this is they told us our Zippy wheelchair "broke down" so we could fit it into the back of our car. If by "breaking down" they mean you have to carry an allen wrench (or how ever you spell it!) and disassemble it, well then that's fine! But that wasn't what I was expecting, and even if we disassemble it, it still takes up just about as much room. (We only have a Dodge Durango. It does have 3 rows of seating. But if our other son, Brandon, is with us, he must sit in the far back seat. Tom & Tommy sit in the middle seat, and I'm the designated driver:p The wheelchair won't fit in the talegate area left in the far back & our 3rd row seat is a bench seat with no split seat option. And the Durango isn't wheel chair lift friendly. So, in this lovely economy, I'm not running out to buy a new vehicle now that Tommy walks just fine. So, unfortunately, we haven't even gotten to use our nice wheel chair that took our DME 10 months to get us!!! Opps! Sorry I just stole your post!:eek: ) My point being, I hope you can "toss" your wheel chair in the back:o

As for the IEP...REMEMBER, it's a legal binding agreement that you signed for meaning you agree with it! If you do not agree with something in her IEP know it is your parental right not to sign it. You can always call a parent liason to help you at ANY IEP meeting, be it the first one or the 1,000th one! And if something is not written in her IEP that you are assuming your school district will take care of (like home bound services to start if she is absent too often), DON'T ASSUME ANYTHING!!! Get it in WRITING before you sign. Sometimes all these little things take time when making up an IEP, but at least you are starting well before the school year starts. So go for all of you! It's nice to see a school district look into the future so families can have time to ask questions. Also, know that sometimes being a little vague in an IEP can also work to one's advantage. So, you do have to look at things from several different advantage points, but you know your child's wants & needs best. Just make sure she gets everything you are looking for in that IEP before you sign. If you have never been to an IEP meeting, it can be very overwhelming to many parents. As a public school teacher, I always encourage parents to take that IEP home, read and review it before ever signing it. Sadly, not one parent ever took my advice, and then soon after the IEP, they want it modified right away! It doesn't work that way! Some districts make you wait 30, 60, or 90 days! Schools used to make you wait an entire school year!:eek: Ask your district what their time line/policy is if you should think your daughter's IEP should need to be modified during the course of a school year?

~Maggie

[Alex's mom]

We had our first meeting w/the town on Dec 1, and Alex will be 3 on March 21. Her eligibility meeting was held in the beginning of January. The school's OT,PT,ST and preschool teacher have all seperately come to my house when an EI therapist was here to get familiar w/Alex and with her needs and abilities. I wish everyone could have the experience we're having... it's been great.

Someone at one of our meetings had mentioned taking home the IEP before signing... can't remember who it was. I did plan on doing that. Thanks for the advice. Even with everything going so well, it can still be overwhelming and I would need time to read and understand and talk with dh about it.

The wheelchair we're waiting for is an Invacare Spree XT. We tried one out when she was getting measured. We even took it out to my car to see if we could fit it in the back. The back of the chair had to be removed and then something else folded down and then it had to be wiggled in. I came home that day and told dh we need to get a minivan - there is just no feasible way I can sanely do this each and everytime we go somewhere. The wheelchair will get ruined and the roof of the SUV will get ruined from shoving it in all the time. We purchased a Caravan. The floor is lower, the roof is higher and the seats fold into the floor. You could say we've done our part to stimulate the economy. :)

The wheelchair is made to hold a lot of weight on the handle (so I'm told from the dme) and are not easily tipped. I believe him, but my worry is that the bus will show up and won't take her on because of the way the vent is secured. One day at a time..... :)

[drct1245]

I was just talking with our IFSP coordinator about transition to an Part B. I had mentioned how we probably will not send Ayden to school in April b/c of his fragile lungs and because he will need to have his stoma closure surgery. She said that if a Dr writes a note on our behalf saying that b/c of Ayden's fragile lungs, he cannot attend in a class environment, the school district has to bring services to your child.

Ayden isn't on a vent, but still has O2 and his lungs are still a little streaky looking... so he isn't out of the woods yet. He is mobile, so that causes problems when there are other kids around.

I would say definitely have O2 at hand... BUT this will have to be in his IEP. Did you talk to an advocate? I am thinking of having one with us at our IEP just b/c Ayden is so complicated, but not as complicated as having a vent/wheelchair. A local friend has had so many issues w/ her son and O2 - he isn't on it all the time, but the Dr said that if he is below 92%, he needs to be on O2. In doing so, the school has been sending him home everytime he is on O2 and isn't allowing him to come to school on O2 - the school claims it's all or nothing on O2. :( very sad case.

good luck!! we are just behind you since Ayden's bday is April 8th.

[drct1245]

... As a public school teacher, I always encourage parents to take that IEP home, read and review it before ever signing it. Sadly, not one parent ever took my advice, and then soon after the IEP, they want it modified right away! It doesn't work that way! Some districts make you wait 30, 60, or 90 days! Schools used to make you wait an entire school year!:eek: Ask your district what their time line/policy is if you should think your daughter's IEP should need to be modified during the course of a school year?

~Maggie

Thanks Maggie for the info... I will make sure and take your advice. My preference is to take it home to digest! :) I was thinking about just getting an advocate from day one for Ayden... do you think that would send a negative message?? (sorry Stacey, don't mean to hijack your post)

thanks for your insight.
Dawn

[babysupermansmommy]

anthony cant go to school here yet...
they want to bus him 30-45 minutes away, and they wont let him take a nurse on the bus and they said he doesnt have to have nurse at school ,that they school nurse will do... I said NO WAY!

Hello Vent kid alone on the bus with just the bus driver!!!!???!!!
They dont get it still. And the whole not having his own lvn and just the school nurse there isnt okay with me...i feel they cant meet his needs so right now he is home schooled...
1 hours of sp a week 1 out OT 2 hours preschool teacher and the one think I HATE Is only 1 hour a MONTH Of PT!

[Jacob's Mom]

Stacey, It is really great that you are having a good experience. Jacob is in 1st grade (4th year in public school) and we have also had a great experience. It amazes me how much school districts can vary in what they provide - our district pays for a sx machine, supplies for it, O2 tanks, etc.

As far as the vent being attached to the wheelchair, we've taken a bracket off of a table stand and attached it to the back of Jacob's chair. I can post a pic if you'd like.

[Alex's mom]

Amanda, a pic would be great! Thanks! Glad that you had a good school experience with Jacob. I wish that could be true for everyone.

[Jacob's Mom]

Here you go, Stacey. I think my husband had to drill a couple holes to attach the bracket. When Jacob goes to school we also send the heater (his nurse plugs him in at school) and it sits on top of the big battery.

[Dana]

Hi,

Some suggestions I had are

1) Don't forget an ambu bag on the chair for the bus ride if needed.

2) We do keep an extra tank at school

3) An extra Sx charger at school is a good idea.

4) An extra g-tube is nice as well if it applies.

Fight for what you want in the IEP. It might be good to go see your child in the classroom if possible. This helped our teacher see where her wheelchair would fit and where it was a tight fit etc.

Good Luck. I bet it will be a good experience, especially if you have a school system willing to work with you.:D

[delightdee]

Amanda....I love the wheelchair set up!! Lukes chair is super small since hes only 14 months old but I love that the vent is attached. We use the stroller handle bar attachment and hang it over it.

[Ann]

Amanda....I love the wheelchair set up!!

I agree Amanda. Do you think we can get your dh to make one of these for us? (for a fee, of course.) I don't like how Jack's vent hangs on the handle bars.

[Alex's mom]

Thanks for the picture Amanda. Very cool. :thumb: