Timothy's Schooling

His home bound tutor flaked out on us the second week into instruction. She came 15 minutes early (so I wasn't there). Then she left right before I got there. We had arranged for her to be there at 3:30, she came at 3:15 and left at 3:30. I had called and told her I was coming because I was in traffic, but would be there right away. She left within a few minutes of me getting there. I called again and she said she was there at 3:15 like we arranged (I said no we arranged 3:30 AND I don't get out of class until 3:15 and had been very clear about that.
Then the next appointment, two days later we were waiting for her and she never showed. I had called that morning and made it clear again that the appointment was at 3:30. She never showed. I called her at 4:00 and she said she had called me twice that day and left a message (not-there were no messages). She claimed to have the stomach flu.
The next week she didn't show again. I called her at 4:30 and she said she was overwhelmed with responsibilities and could not teach Tim. I emailed his counselor at school and was told that his homebound teacher, "came to me with concerns that you were not keeping the appointments that you had scheduled with her and then when she was trying to arrange an alternate time, you were not flexible. She resigned from the position to serve as Timothy’s homebound teacher." OMGosh!!!! I was incensed!!! She lied to me, she lied to the counselor and her supervisor! So, I have been after them for two weeks to get another teacher and to report these lies to her supervisor. I have had no replies and have not been able to get him a new teacher. The state tests start tomorrow! Tim will not be able to take them. This morning I called and left a message with the homebound office. I said,
"I am very concerned that Timothy is not receiving his education. He is entitled to a free public education and he has rights under the Americans with Disabilities Act. Please arrange a new teacher for him as soon as possible." I left my phone number. I got an email this afternoon stating that Timothy has a new teacher. I had resolved that if I had not heard in the next few days I was going to bring a law suit against the school district. Its a good thing they responded to my phone call.

Sorry to hear that. I hate when people do things like that and then lie to try to hide the fact that they were in the wrong. They always act quickly when you threaten them with things like that. I hope Tim goes well in his exams, Good Luck to him.

You should put this in writing. I'm in Canada, but our school won't do anything unless it's in writing. I can't even get them to return calls. It's possible that things are better in the states, but I'm sufficiently cynical that I think that you need to document this thoroughly. This is serious.

Lily

You're right, things are always better in writing.

I'm sorry to hear this happened. My "group" of co-workers include homebound teachers so I hate to hear that a professional lied about it. I have a pregnant student right now who is due in May, so if she has her baby early, I will be her homebound teacher. If something doesn't work out with a student or I'm not comfortable, I tell my boss and she gets another teacher for that student. There was no reason to lie about it. I hope the teacher that replaces her ends up being good. I love being able to work one on one with students because it is easy for me to see "results" and improvements they make as they get older. I usually get a student on my caseload from 6th grade until they graduate.
I'm curious, how does Tim qualify under ADA? (Does his ITP qualify him?)

I hope he does well on his state exams whenever he has to take them. Wish students didn't have to do them, but at least it gives the teachers the accountability of making sure that they are covering the curriculum they are supposed to within a grade level.

Tim qualifies because his platelets have been so low for so long and he is so unstable. Here in Charlotte, the CMS schools, there is so much violence in the schools, and we are in a system where he could get in a situation where he might get knocked around and or even get in an accident and it would be the end of him. His ITP qualifies him for homebound services. His hemonc agrees he should not be in school at all. With the Nplate he has been a bit higher recently, but who knows how long it will last. Even today he woke up with petechiae on his arm from sleeping on it, so we'll see if he held out this week.

We met his new teacher today. She seems really nice. She used to work in an enclosed classroom with BED kids, that's behaviorally-emotionally disturbed kids. She seems really good with him and he seems to like her. She seems open to our schedule and not high strung like the last teacher was. We were off to a good start, I think.

Oh, as far as ADA, ITP is a disability...any disability qualifies an individual under ADA. A person cannot be discriminated against in any way, and Timothy cannot be denied his right to a free public education because he has a disability, his disability being ITP. He cannot attend school because of ITP, and if they deny him his education, and by not providing a homebound tutor they deny his education, then they deny his rights. I hope that answers your question.

Seems we are in the same area. Logan has been on Promacta now for 3 weeks. Not to sure if it is working. I am thinking the doctor will up his dosage next week. His counts went from 25K down to 13K last week. We did not go this week (thankfully)
It is very frustrating going to the doctor every week and very heart wrenching to see my 5 year old get so upset with getting his blood drawn and not being able to play like his friends!

Heather
Mother to Logan 5, diagnosed June 2009. Has not had counts over 25 in months!

Heather,

Just wanted to quickly say not to give up. My son didn't have a single count over 20 for 6 months, and most of them were around 10 or lower. Anyway at about 6 months he suddenly looked loads better and when I took him for a test his count was 120ish. Since then it has bounced all over the place, sometimes up and sometimes down, but never quite as low as it was those first 6 months. Logan might just improve by himself yet..........I hope so.

Ali

Donna...thanks for clarifying about the ADA laws. Nice to know if Caitlin is ever in that boat in the future! (I hope not!) I'm sorry to hear you have alot of violence in your schools. I don't think I've seen a single fight in the school I'm at in the 6 years I've been here so I feel blessed about that! My daughters' school have had a couple of fights, but nothing major. I went to a high school that had gang problems (fights almost daily...many involving weapons) so we really had to watch our back so I understand the feeling of being in that atmosphere.

I hope to hear that Tim is still on the upward trend with Nplate! I'm curious...did he get ANY kind of response when he was on Rituxan? I am still very hopeful that we will go back next week or the week after to find out that Caitlin has a jump in her platelet count.

I'm not sure I agree with keeping a child out of school, due to ITP, but he's not my child and I don't know the school, so I'll support your decision. I can certainly understand home bound schooling when a child has multiple abscesses, which result in educational delays and ITP can cause that.

If you have problems in the future, there's an organization called Advocacy for Patients with Chronic Illness www.advocacyforpatients.org/ This organization works with schools and districts which are being uncooperative with parents who have children who need special services, or end up with excessive days off due to illness and need tutoring and home bound school or special services. She can help you in managing the school. She also helps with insurance denials and other insurance or disability concerns.

I think the decision regarding homebound is a case to case decision. My other son was homebound for a time. He needed it at the time. He has a heart condition and MS and was not able to attend school due to severe fatigue. He is now at age 18 attending high school and is a freshman/sophmore. He is a special case and is finally ready to attend school full time. He has many learning disabilities and needs and is in enclosed classes, and a few mainstream classes. But he is really enjoying school and though he is struggling in his mainstream classes, he wants to be there.

Timothy is very fragile and his doctor does not want him in school. When he can drop to zero or 1k at any time, its just not safe for him to be in an environment where he can have head injury, etc, its just not worth it. He tends to be aggressive as well, and think that he is indestructable. ITP is not to be underestimated as a disease, and I think it is just as dangerous as any disease. I'm going to listen to his hemonc, who by the way, is one of the best in this region. Homebound is the best for him at this time.

I forgot to say that Tim did not have a response to the Rituxan. I hope that Caitlin does, though.

Hi,
Just catching up with the boards, I think that having to get your son home schooled cannot have been an easy choice but one up to you. You seem to be very level headed and as every child is different and every child with ITP has similar but different reactions you have looked at all the options. Even in the home environment it is not easy, my son got a climbing frame last summer and within a month was diagnosed with ITP. But a five year boy will climb. I am in the UK and lucky enough for him to attend an independent school with small class sizes and his headteacher is wonderful any injuires we are contacted immediately. All the best and good luck.

Nadia.

I hope Tim does better. I have you looked into homeschool support groups in your area? I began homeschooling mine a few years ago because my oldest is Autistic and Jonathan has been on isolation all year. He's four and can read and write and do basic math, and she's 12 and graduating 8th grade. it was hard starting out cause they miss their friends, but we have found lots of homeschoolers around here to hang out with and that has really helped. LOL The key is finding the ones that haven't been totally sheltered and are weird. I still hope to one day send Jon Jon to public school, but right now it's just not an option. We are doing American School for high school. But you can just go through the school system, borrow the books from them and do them yourself. We don't use a tutor or anything, but then we've been doing it for a while. i hope you are able to get things figured out for him.

I've been a homeschooler for a long time. In NC the public schools do not support homeschoolers at all and will not lend books or supplies at all. Its crazy here. You can't get any support. I have not been able able to find any support groups in our area either. So, its been all on my own for years. My boys have been very difficult to homeswchool, my youngest, and Timothy being the hardest. They just don't want to do their work. Josiah has real learning disabilities, and so putting him back in school was a necessity. Having a homebound teacher for Tim has been a Godsend. Today was the first day I was able to get him to do any assignments. I worked out a barter system where he works for 30 minutes he gets 15 minutes of either phone or internet time. We don't have TV, so it worked well today. He did quite a bit of work. I hope it continues to work. He's really bright, so it doesn't take him long or much effort.

My girls...they were easy. I had a whole classroom, supplies. But that was in California. You could go to the school, they would give you supplies, books, even teacher support if you wanted. They know how to do it (at least 10 years ago).

Wow! I'm so sorry to hear that they don't offer any support. My daughter is also very hard to get her to do anything, but when she does she is very bright. I think it's harder for the super smart kids cause they get bored easy. I barter with her too. Finish one subject and you can walk the dog around the block. It works most of the time. Thank goodness. The woman in charge of the school district's private library here had a husband with ITP, so she is super understanding. The rest of the staff are not, and will tell me there is nothing I can borrow. Then I go in to her and she hands me everything I need. LOL! I love her! Since my oldest, Makenzie, will be starting high school, I wont need the library for her this year. I think I will start Jonathan on his first grade work this year, though, because he seems to be ready. I'm glad Tim cooperated with you today. It's so hard when you are trying to do what's best for them and they can really fight you on it without even knowing they're doing it. Hopefully he keeps up the hard work!

Donna--and anyone else who's interested,

If the problem is that the pace is too slow, or sometimes he's not feeling well during a school day and misses info--look into virtual school! There's a large program that runs for FL schools--helps kids take classes their school doesn't offer, lets kids take additional coursework if they want to. But you have to have a kid who will actually log on and do the work! Look into it for your state! High school level and up! Ann, Caitlin's Mom

Ann, how I WISH NC offered a free virtual school. There is not one here because NC does not support homeschooling. So, the kids suffer. If I want to do virtual school I have to pay my monthly income to pay a semester's tuition just for one child. Its sad, but true for a single mom in school. So sad. NC sucks.