Since Hannah is going to be turning THREE years old in a few weeks (end of July), she is going to be aging out of Early Intervention services. I cannot believe how much time has flown!
Now the decision has come whether or not to put her into school or have her schooled at home this fall.
If we put her into school (hoping it is the same one as Ethan or Abby or very close), it would be 4 days a week for 2-1/2 hours a day. She would get socialization and stimulation, which is all we would really want for her. She loves music, singing, having books read to her, and just being around other kids (especially her siblings and cousins). She would also get PT, speech, and OT during this time.
If we keep her out of school and have the school district school her at home, I think it would be something like a couple of hours a week. PT, Speech, and OT would also come, but not as often as they would if she was in school.
The MAJOR problem is that they won’t allow us a one-on-one nurse or someone one-on-one for Hannah. This is so close to being the deal breaker for us. What if she pulls her trach out? Having a nurse “on campus” is not going to be helpful when you are dealing with a child who loses their airway — what if the nurse is with another child? Heck, what if the nurse is in the bathroom? Not only that, but what if she gets really upset, especially being in a place where she doesn’t know anyone, and she gets upset, which leads to her breath-holding spells, then becoming hypoxic which may lead to another tonic-clonic seizure or possibly even a stroke? If there is no one there she feels comfortable with to calm her down, what then?
The only way she can get one-on-one nursing is if she is on a vent. I don’t want to have to have Hannah’s condition deteriorate to get the type of care that we feel she should have. After talking to some people at the school district, she will be one of the more medically fragile kids they have had – but not by any means the most medically fragile.
I really want her to have that socialization and stimulation that being in school would bring her. We know she isn’t going to get a traditional education, and reality is, she doesn’t have the development or capacity for anything more than what a 12-month old can learn. But she does love interaction, loves trying to color, and we know she would thrive with that stimulation.
Daddy thinks we should try the school setting first and then we can always bring her home. If we do decide to do that, I can assure you that I will be sitting right outside that school’s front door WITH the teacher and administration knowing I am there in case something happens. But I just feel like I shouldn’t have to wait outside for 2-1/2 hours each day because she isn’t getting the type of looking after she needs.
I don’t know. I REALLY don’t know what to do.
I was in the same situation with Jobyna. I would love for her to go to school, but in our case it would be life threatening. I don’t even leave her alone in the hospital.
Follow you gutt feeling Carrie. If you are in doubt, then there is a reason. The schools here simply don’t have enough resources.
Our home teacher is phantastic! And I actually asked him how he felt about having such medically fragile children in school. And he agreed on my decision and opinion. Teachers aren’t nurses.
J loves her teacher and has lots of fun. We try to get the social interaction elsewhere.
What does ur doctor think of the school option? If your dr thinks she requires more individualized medical attention could u sue or threaten to in order to get the school to allow it?
It doesn’t make much sense to me. If a child needed a full time shadow it would be provided, the difference to me is much more obvious… such a shame that logic and bureaucracy never seem to go together…
praying for Little Miss Hannah.
praying for all of you but especially Little Miss Hannah.
I really question the no one-on-one aide. I’ve worked at a school that ONLY takes “special ed” kids, and many of them were “medically fragile”. Typically we only had 1-2 kids on a vent. Significantly more than that trached. The vast majority of the particularly younger trached kids had a 1:1 aide and/or nurse (the kid on the vent had both). What is the districts guidelines/policy for a 1:1? Have you had her doctor write a letter of medical necessity that she needs one? Have you looked into a student advocate for her?
The thing that I would be more concerned about is Hannah going during flu season and being exposed to all of that junk. (I do know kids that go to school from August to October, then April to June and are on homebased instruction for the winter months for that reason).
Good luck!
It’s tough. Austin turned 3 in Nov, has been on home based instruction since then – with Drs approval to skip school during winter months. He will start school next week for ESY (summer). I’m not feeling very warm & fuzzy about his new placement, but I am going to try it for summer.It was nearly impossible to get placement at the end of the year so that is something to consider if you decide to do half/half. He will be going with his own nurse…and the school still balked a little.
I can’t believe that she wouldn’t get aone on one aid. In OH she would have that. Gut instinct… go with it.
Carrie,
I’m teaching a home bound student and it works out really well-but honestly, my goal for her is to be able to go to “school” for an hour a day during music/art/social stim, but I just don’t think it will happen for her (she’s tremendously medically fragile!!!) I think Hannah is healthier than this child…
Remember LRE-least restrictive environment-they won’t provide the one on one unless it is part of HER LRE and I know that is not comforting for you to hear. I like Robert’s idea and yet I trust your gut instinct. I also appreciate what other’s have said-
Remember, you don’t have to agree to everything presented at the IEP-you could work on the placement piece with the district especially if the doctor’s talk about partial home instruction during flu season. Really examine what is Hannah’s Least Restrictive Environment? It may be that she can do a couple of days a week at school, a day of home instruction during non-flu times and then have the home instruction increase during flu time. She would become accustomed to the people but gradually.
I know this is a lot-I wish I were closer and could help and I don’t know ALL of Hannah’s particulars. I think if you’re open to work with the SD as well as trust your instinct, you’ll always do what is best for Hannah.
HUGS! Raelynne
I don’t understand why she cannot get one on one put into her IEP?
If you get a at least one doctor’s note stating that a 1:1 aide or nurse is required, it would (think it would) have to be written in the IEP. But make certain the note states ‘required’ and not just ‘recommended’, wording is very important.
Maybe you won’t mind me asking this, how do you pay for all this medical bills? I have a child with special needs and they turned down his SSI and medicaid because of our income, now, I don’t know what to do to cover his medications and treatments. I would appretiate some guidance from you or anyone. Thanks.
Best wishes for your daughter.
They hate the idea of one on one aides here. The only kids who get them are behavior kids who require non typical behavior intervention (the aide has more latitude than a typical teacher one physical restraint. They absolutely refuse to give V a one on one. That said, the class room has 2 aides and they are pretty much solely dedicated to her. It might be actually better than you think. I seriously doubt she would end up in the same school as your other kids. They only have the right programs at certain schools. I would also be suprised if they had a full time nurse at the school she got placed at but you should make sure she is at a school with a full time health aide you are comfortable with. I would TRY the school district. V learns nothing at school but I swear, she lives for it. Everyone there absolutely loves her and the kids are incredibly protective of her. We could never replace those relationships. Its a tough decision but I think its worth a try (with you sitting in the parking lot the whole time!).