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[LynnZ]

Wow, I haven't been here for years. I used to post as "Lynn" many many moons ago and have come back because I know you guys are the best.

I will try and update quickly. Chelsea is now 14. Straight A's, plays 2 instruments (clarinet and alto sax) in High School bands. She is doing great. She is still my difficult child. But I love her dearly. Abigail my middle (11) is what brings me back. She isn't necessarily a difficult child but she has medical problems. She has psoriac arthritis and relapsing polychindritis. Yea I know WTH am I talking about. Give me a minute and I will go back. Then there is Bethany (8yo) another difficult child - ADHD and dysphonic dyslexic. OK, I have my hands full. She is doing well with her IEP in place.

My issues is Abigail Psoriac Arthritis (psoriasis and JRA Juvenal Rheumatoid Arthritis) and Relapsing Polychondritis (A blood vessel disease that deteriorates the cartilage in the body). She also has a subglotic stenosis - narrowing of her airway. Because of all of this she is on immune suppressives. She pretty much has no immune system. She goes to school and in 2 - 3 days she has strep. We tried homebound school for the first part of the year. It didn't work for us. We sent her back to school and damn if not 2 days later she has strep again. I have a 504 meeting planned in a week. 2 days a week for 45 minutes is not enough time to graduate the 6th grade. That is what is allotted for home bound schooling. This kids has health issues that keep her from sitting in a class room, yet she doesn't get enough teacher time to learn. I am her mom not her teacher.

Someone, anyone, have any ideas? We are in Michigan, In Macomb County, In Mt Clemens School Dis

Any advice is welcome!!!

LynnZ

 

[LittleDudesMom]

Wow Lynn, you have your hands full with your sweet girls! Great to hear the oldest and youngest are doing so well.

Unfortunately, I don't have any suggestions for your middle girl. Since homebound is not working and every time she goes to school she gets sick, I'm not sure what the alternative is. Why is the homebound time allotment so short? You mention you have a 504 meeting this week and I'm thinking her disability would qualify her for an IEP. Perhaps you can get more homebound instruction that way - although it sounds as if you would rather she be mainstreamed? Did the homebound not work because of the small amount of time or for some other reason?

I'm sure our resident eduction guru, Sheila, will be along to offer you some suggestions. It's usually pretty slow here on the weekends....

Sharon

 

[confuzzled]

hi lynne--
i have one with JRA who's on embrel so i know where you are coming from. i dont have any huge words of wisdom for you on the school issue. mine is in a self contained room in a smallish school (reasons other than JRA) and we've been very lucky illness wise. i have a good working relationship with the school nurse who lets me know if there is anything "going around" and then i use my judgement. we just had exposure to strep and mono and she let me know asap...fortunately he was already ON antibiotics. i dont know about your abigail, but when mine *does* get sick, he gets s-i-c-k...so i worry too about keeping him safe.

my only suggestion would be to speak to the rheum and see if they have any suggestions...maybe a medication change or prophalactic antibiotics during the height of the "sick" season would help the constant illness. hopefully some creativity can get her to stay healthy for longer periods of time.

hope she feels better soon!

 

[Sheila]

Even with-a 504, the sd is responsible for providing for your child's educational needs.

If the problem is there's no respect for a 504 in your district, get the IEP.

If you need input from a medical professional to convey the gravity of the situation to the district, get a letter from the doctor and send it Certified Mail to the school district. That way they are formally "on notice."

If this doesn't work, you'll have to start the Complaint filing process -- ccing it to your State Education Agency.