Getting Ready For School!

[kclynn]

We just registered for school today. After being totally homebound last year my son wants to try to go back full time. His heart is in it, not so sure his body can take it. He was really tired today after registering and walking around to find classes.

I was wondering what the the other parents were doing with their schools, either for in school or homebound, to try to balance getting an education and staying healthy. I am pretty sure he will have a rough time of it no matter what. Our school is pretty good but it is up to me to ask for things. They are very interested in him succeeding but also staying healthy while doing so.

And I love to hear from the teens on here too! Help us parents do what we can for our kids

[corina]

i think it's great your son wants to give it a try, though i fully understand your worries kcmom! it's a good thing the school seems to be willing to work with you. really hope your son will succeed within healthy limits and have a better quality of life amongst his friends!

corina

[iheartcats]

I wish him well. I'm trying to hold on working full-time while I can...and my heart is in it. So I totally know what he's feeling.

The one thing (and this is so hard for me to get across, even!) is I can't do 'outside work' activities (grabbing a drink after work, long lunch break walks, etc.). People don't get it, but I just don't have the energy to throw out for that. I think you'll really have to be there and support him when he can't just do all the extra things kids do outside of school. Sometimes, that's the most frustrating.

It's hard to get up and get going in the AM, too, so I really try to hydrate in the mornings. Mornings have always been the worst for me and it's getting past that everyday!

[rmlyonsfamily]

Kayleigh finished last year on homebound and is planning on returning to school as well. She goes back August 25th. What concerns me more is that she goes to 2 schools during the day - she is at the career center the 1st half of the day, the high school the 2nd. We have an appt with her doctor Aug 17th to be sure she is ok to go. I have met with the principal already and they are aware of her very strict medication, nutrition, and hydration schedule. They said they'd need a letter from our doctor outlining it and they will comply - so that makes me happy. I think her day will look something like this:

8am - Meds and breakfast at home

10am - Snack and 20 ounces of fluid/gatorade at career center - no biggie because they allow food/drink

12pm - Noon meds during travel period and lunch

2pm - Snack and 20 ounces of fluid - she'll have to be excused from a class at the high school

4pm - 4pm meds to be given in the high school office as she leaves school

Honestly - I'm more nervous about her endurance, not necessarily the nutrition/meds. But I know it all has to work together.

[kclynn]

Last year was awful on homebound. We live in a midwestern state and with the record snows, cold weather, trying to find out what was wrong, isolation, well, it really is as bad as they say - and we had a good teacher. Depression was bad.

One thing I see is it looks like your school starts later than ours, that is a good thing! Ours starts at 7:30

I am going to do everything I can to get him to school at least a couple hours. They said our school has no option for part-time homebound and that is a crock. We live in a huge school district. I just fired off a letter to the head of special ed services (I was REEEAL nice, haha) I know the special ed coordinator at our school had never heard of pots so will just have to educate them all and tell them that if at all possible he needs to be at school, even for as little as 1 hour. Apparently the policy is 5 days absent they get put on homebound. 5 days is too long, and if he recovers after a couple, or is better, I want him in the school building. They told me this last year but I didn't really get to explore it. Unfortunately I think my son is starting the October slide already. He has been doing so great. It is 90 degrees and he is sitting in the recliner with a quilt.

His classes are all over the school (1800 kids, so big school) so I am worried about his endurance as well.

[rmlyonsfamily]

Her school starts at 8:30am. So she can eat, then take her meds, then head out the door. That does make mornings a bit easier. And her high school is huge as well with no part time homebound. (+400 per grade level). We're going to give it a try and see how it goes. If it doesn't, it doesn't. We have a huge church family with a large homeschool support system there. We may just switch to that if need be. The homebound program in our district is for a max of 8 weeks... so we don't have much of an option other than TO give it a good try.

I hope it goes well for you guys!!

[kclynn]

Really?! What happens after 8 weeks? That doesn't sound right at all. Surely they have other disabled kids who can not be in the class room? What about kids who have cancer or transplants? Kid that are immunocompromised and have to stay home. Do they just not provide any education?

[rmlyonsfamily]

Honestly, I'm not sure how they handle it after 8 weeks... can't say that I thought about it until now. But... I think I'll call and ask them Monday!

[Christy_D]

I'm not sure only an 8 week Homebound is even legal, this all falls under the Americans with Disabilities Act. I guess we are very fortunate in that our school is doing anything and everything they can to get Cody his education. His homebound teacher has been coming all summer(when he is well enough) to get his sophomore classes finished.

Last year, he was able to go for 7 weeks but only 4 classes a day. The school paid for his 2 online classes. Then when he couldn't go anymore they paid for 4 homebound classes, plus his 2 on line classes. This coming year, which starts Aug 15th (at 7:23 am!), he is signed up for 3 on line classes and 3 homebound classes. Our SSD homebound has a new on line program they started last year for kids who are out of class long term. It was so much easier than trying to do the school curriculum and having to communicate back and forth from the school teacher to the homebound teacher. His homebound teacher is his teacher, no other teacher from the school involved.

Hopefully these kids will all be well enough soon to make it to school with no problem!

Christy

[kclynn]

Kaybers Mom, perhaps they have distinctions or levels and after the 8 weeks they have a different level of service, may not impact you at all. As Christy said that would be illegal to deny education so I am sure it must be something like that. Especially a larger school district. I think some of the smaller ones still try to pull stuff on people and some of them can be difficult to work with no matter if they are large or small. I know last year you were really occuppied just trying to figure out what was wrong with K and getting her treatment. That is where we were last winter. My son was actually out of school for 6 weeks before we got any homebound and we had to approach them, which I think they were supposed to come to us. We weren't really thinking of that at the time but he got really far behind and ended up not getting all his credits. Guess we just all figure it out as we go.

Christy, our HB teacher complained, too. She said it would be much easier on everyone if they would at least just give her the curriculum. They COULD do that.

[bkweavers]

I'm assuming at this point that you have a 504 plan for your son? If you don't, I would strongly suggest it or putting him in the special ed program due to his illness. A Learning disabilities teacher recommended that for our daughter at the beginning and we have been so happy and satisfied with that. I don't seem to see many other kids with POTS put into special education completely on here or other websites and I don't know why. For the first year of becoming ill, she only went to school for 3 hours and she missed a lot of school during that first winter. We never had to worry about her completing all of the work because it was so modified for her. At this point, she is right on track to graduate with her peers. I have to say we've been very blessed with a great school district who educated themselves on her illness and went above and beyond for her.

Just a few other thoughts-I know it may be hard for your son to do this but have him use a wheelchair to conserve his energy at school. Liz sat in reclining chairs in every class because she couldn't sit up all the way. She also had an aide to help her at all times to get around school. Liz had lap desks provided to her as well. Those are just a few of the ways they helped her to make her life easier at school.

Your school HAS to provide help to you and your son. There is just no way they can't. Unfortunately, you may have to be very adamant and forceful to get what your son needs. It seems with this illness, you have to spend a lot of time and energy to fight for what your child needs!

I hope some of this helps.

Brenda

[kclynn]

Thanks Brenda,

That is all really good advice. My son last year was homebound and couchbound. But with meds and exercise he is quite active now, bike riding, went to camp, and does "most" all of what he wants. As you all know, he has to work harder to achieve anything he does, though. With school because he is going in strong I feel like it will be a bit of an uphill battle and though the school has been quite good so far, I really have no experience in dealing with in the school stuff. He won't need a wheelchair now, who knows in the future.

What kind of reclining chairs? You know school, they often have no imagination so if they don't have something, it helps to have specifics. The stress of all day, everyday I know is way different than bike riding in the summer. This year, though, at least we know what he has, he has meds or we can try new ones, what ever it takes.

Oh, he does already have a 504, though there isn't much on it right now since they didn't want to talk about it last year because he was homebound. I understand that, we didn't even know what kind of accomodations he would need and neither did they. Now that he will be there next week we will sit down and make the list. It does seem like we will be chasing symptoms, so I think they will see a lot of me. I am trying to think of something outrageous to put on the list that they can ax and it won't bother us and they will feel the satisfaction of not letting us have everything.... joking! The two things that are on there are extended time for assignments, and modified assignments. That is it, not much.

But seriously, if he takes a big crash I will even go for the IEP, I have nothing against asking and getting the services he needs. I had given them the Dynakids brochure which is a good start and has a list of suggested accommodations to start, some of which I wouldn't have thought of, like warning before fire alarm testing, so he can leave the building early, because he is sound sensitive, and it would really ruin the rest of his day.