School

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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School

Postby lttutrow » Wed Aug 04, 2010 10:01 am

Anyone else feeling a little nervous about school starting back up? My daughter missed about the last six weeks of school last year, and while the last month has been a good one for her, they are changing her meds back which will happen within the first days of school starting. How does school work for your kids? Any things that seem to help more than others or things that make it worse? Does anyone here have experience with homebound services, and if so, do you mind talking a little about how that works and got set up? I hope we don't go that route, but if she ends up having a year like the last one ended, I think that would be better than having her teach herself with accommodations for due dates, which is what we did last year.
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Re: School

Postby lcolangelo » Wed Aug 04, 2010 10:41 am

My 11 year old was on homebound instruction for about 3 months last school year. I simply called the guidance office-- she is in 6th grade, and they told me what I needed to do== we had to get a note from her pediatrician stating that she needed home bound instruction until further notice. 2 Differnent teachers ran it== she went to the library for aobut 2 hours 3 times a week. They would also have come to our house-- but with 3 other kids at home the library was quieter. She was then resposnsible for completing the assigned work on her own time. It worked out well== but she really missed her friends-- I think she was glad to finally go back to school. Any other questions feel free!
Good luck!
Lisa
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Re: School

Postby lttutrow » Wed Aug 04, 2010 7:35 pm

Thanks Lisa!
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Re: School

Postby memom » Sat Aug 07, 2010 7:53 am

I too am a little nervous about the upcoming school year. MaryEmma started school last year but we soon realized she could not handle full time attendance. Once we got her settle into the home bound program it worked very well for us. We had a teacher come to our house 2 - 3 times per week. Also, we supplemented her work with an on-line teaching program. MaryEmma has a play house in the backyard which we set up for her and the tutor. In the end, she past second grade with A & B's. I know she would not have done so well if left in school.

I hate that she missed out on so much extra school activity last year. But, the home bound program was really the only way she could handle learning. This year we are going to let her be assigned to a class and try sending her only a few hours a week. Our therapist suggested scheduling her to attend school when the teacher is going over subjects that MaryEmma is good at like math and art. This way, MaryEmma will feel confident and have some time in the classroom. Subjects which are more demanding for her and require one on one teaching will be taught at home by the tutor.

One thing I noticed while trying to keep her in school last year was the lack of continuity. When she missed a week or two at a time and then returned to the class she was behind. This would undermine her confidence and she felt left out and sad. By teaching her at her own pace, in a controlled environment she could do the work and she felt good about herself.

Our school district required us to have our ped. doc. sign a health form and we set up an IEP for MaryEmma. They worked very well with us and really have been supportive through the whole process.

I wish all the best for you and both your children. Please know I think of you often and follow both of your children through caring bridge. I know how hard this is for everyone. I just keep reminding myself to live by the hour and enjoy life as much as we can, whenever we can.

Thinking of you & your family...

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: School

Postby lttutrow » Sat Aug 07, 2010 10:05 pm

Thank you Lauri!!!
How has MaryEmma's summer been?
I'm definately nervous about sending Kaylee to school. Our school has registration every year, even for returning students, and the nurse was positioned in the hall. The hall everyone was walking down toward the library to get their schedules. The nurse began asking the standard questions, "Does your child have any medical conditions we should know about?" Me: "She has a 504 plan that has more detailed information in it." (while turning to look at the many people in line or walking right behind us) Nurse: "Are there medical conditions or medicines related to that?" Me: "Umm..well, she has a chiari malformation and is on medication for the headaches that she still has." Nurse: "Does she have seizures?" Me: "Well, we don't think so, but they're going to do an eeg to see. They think it's the syncope causing the blackout." Nurse: "She blacks out?" Me: "Well, she has Neurocardiogenic Syncope." Nurse: "OH! Well, we at least need a peer buddy with her at all times then! Someone who knows what's going on for her and can help get the attention of a teacher." Nurse: "Should we give her an ice pack for her headaches?" Me: "Uh, no, actually, she's allergic to the cold." Nurse: "I'm sorry, did you say she's allergic to the COLD, you mean like, cold temperatures??? We should get the guidance counselor who is assigned to her out here to talk to you, just a minute." And it turns out the guidance counselor was too busy, she did call me and the first day we can meet with them is about a week into the school year.
This is a new building, so not sure if the air was just not turned on yet, or if they are planning to keep it turned down as a cost saving measure, but even the staff were red faced and fanning themselves. Kaylee started feeling sick and we were only there for a half hour. She overheats really easily. I hope this goes well, but I feel like we need to plan ahead for the things we know will be obstacles and have a good back up plan if that problem solving isn't effective enough.
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Re: School

Postby memom » Wed Aug 11, 2010 9:39 pm

MaryEmma's summer has been hard. She has been on antibiotics three different times for returning fevers. She has terrible reflux, dizziness, headaches and leg pain when she over does it. She is having problems swallowing. At one point she could not swallow at all and we ended up in the emergency room. They said it was an allergic reaction, I was not convinced. We had allergy tests run and turns out she is not allergic to anything. Anyway...

We see Rhuematologist Oct 1st for follow up. They called in a presciption for Celebrex, we start tommorrow. She also is on Omeprazole for refluz/stomach problems. She has been taking 400 mg of motrin 2x day for 2 weeks now in order to keep inflammation in check. It has helped in some ways but it also causes her to have insomnia.

I am waiting to hear back from school counsler about setting up her IEP for this year. School starts on the 23rd and she is getting a little nervous even though she knows she will not attend everyday. I like you hope things go well, but I am preparing for alternatives.

I will keep you posted on our progress. Let us hear how things are going for you and your family.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: School

Postby hbananax0 » Fri Aug 20, 2010 12:26 am

Hello(:

I used to follow your childrens progress but have to admit, over the past few months I have really seperated myself from anything medical...It was time to be able to be a teenager. I truely do hope that are doing well and you are also.

School has always been something that makes my mother, the school nurse, teachers, guidence counclers and myself...well, stressed out! Over the past few years and after missing two years of school we have seemed to figure out something that is working for us. Hopefully you'll be able to pick and choose things that may help your children.

-Keep on top of sleep. If i'm not sleeping we adjust my sleeping med right away. There is just no way somebody can do their best work if they are not well rested
-Eat. The school year starts and I get overwhelmed. In turn, something is going to suffer. Having a midmorning snack has proven to prevent headaches around lunch time and keeps me less foggy. Before we were allowed to eat in class, I simply went to the nurse where she kept my stuff.
-No Backpack!!! This one is huge, no backpack...not even if it is roller. Backpacks lead to muscle spasms that cause those nasty tension headaches that are so hard to get rid of. My school nurse gave my boyfriend a pass to leave class five minutes early in order to come pick up my bag and bring me to my next class.

sleeping pills kicking in !!
I'll add more as I think of them.
Best of luck!
Hannah
Chiari 1 Malformation, EDS, Tetherd Cord, Cervical Instablity, Cranial Settling, Occipital Neuralgia, Retroflex Odontoid
ICT @ TCI 9-26-08
ICT, PFD and CCF Oc-C4 @ TCI 1-28-09
http://www.caringbridge.org/visit/hannahpatry
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Re: School

Postby memom » Fri Aug 20, 2010 9:26 am

Hi Hannah,

You are a breath of fresh air! Thank you for sharing your tips for school. They are very timely. Yes, we are a little bit stessed out here, but I keep telling my daughter that we are going to start out slow and see how things go. We found out MaryEmma's teacher for the year is our neighbor three houses down. I like her alot and I believe this will make things a little less stressful for MaryEmma since she knows her already.

Please forward anymore tips and suggestions you have, we appreciate them more then you know! Take good care of yourself and try not to over do it! Looking forward to hearing from you again soon...

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: School

Postby lttutrow » Sat Aug 21, 2010 10:46 am

Hi Hannah!
Thank you so much for the tips!!!! Did I read on one of the other boards that your head pain is back?!? I hope I am remembering incorrectly! If it is, I hope a solution can be found quickly!
Thanks again,
Lori
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Re: School

Postby Grindel2 » Tue Aug 24, 2010 3:28 am

Lori,

I have been dreading school re-starting. I am with you there! It can be so hard with Robbie. Mainly I hate trying to keep on top of the school and all the stuff that comes up. Would love to stay updated on the homebound stuff in case it comes to that. Robbie as you know doesn't tolerate heat. In June 2009, I had to give the school a doctor's prescription for Robbie's classroom temp. We just had her write it on a prescription pad. The prescription states the classroom temp may be a maximum of 70 to 72 degrees. You could do something similar.

Kaylee cannot learn if she is too warm. She also cannot learn if she has to stand too long and her autonomic issues are triggered. I probably already gave you this site, but the advice for schools might be helpful. http://www.dynakids.org/schools.jsp

We have a health plan for school, signed by our doctor. I can send it to you offline if you wish.

If it comes down to a struggle a couple of key terms are access to the curriculum and FAPE (Free and appropriate public education). Kaylee cannot access the curriculum if the school is too warm and she is ill. It is also not appropriate for her to be made sick by her school environment.

I am guessing this was a new school? It sounds so chaotic and disorganized. If the 504 plan isn't working you could ask for an IEP under other health impaired. Although in a way I laughed when I read your description of the nurses reactions to your information. It was so ridiculously awful it would be funny if it were not real life. I had a friend whose insurance company denied her son necessary medication. When she cited that it was the experts in the disorder at NIH who determined that the medication was necessary, the insurance company's rep said she had never heard of NIH and did not know why their opinion would matter. Hopefully when you talk to the counselor this will be worked out.

I wish Kaylee and Keegan the best of luck in the new school year. (Although really I wish we call could have a couple more months of vacation because I am so not ready for school to start!)

We have a teacher we are very happy to get, at least.

Hoping for a great year for all these kids!
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Re: School

Postby memom » Mon Aug 30, 2010 9:34 pm

The first week of school went pretty well, all things considered. MaryEmma was able to attend a few hours spread throughout the week. On Wed., she and I put together a presentation for all the kids in her class about her condition. MaryEmma used a skeleton to show everyone where her surgery took place. We also showed a short video that Childrens National Medical Center made about MaryEmma and the treatment of her condition. Kids asked questions and MaryEmma loved answering them. She told everyone about her many trips to Washington D.C to see her doctor and the city sights. She really opened up and talked about her condition. It was a beautiful.

I am glad I did not send her more than a few hours to start off. She did have a difficult time sitting in class. The chair was too hard and offered no support for her back. She came home the first day and ended up in the wheel chair for the rest of the day (she was only there 3 hours). We got the chair situation worked out. I wish it was that easy to solve other issues such as the dizziness, headaches, pain, blurred vision, insomnia, etc...

Overall, MaryEmma loved being back in class. She has a few buddies to help her along and she is excited about the school year. Yeah!!!! We have a meeting with counselor on Wed. to put IEP in place. MaryEmma's classroom teacher happens to be our neighbor and is working very hard to make things go as smoothly as possible (what a blessing). The school is going to assign us a teacher to come to the house two days a week for 2 hours each time to help keep MaryEmma up with the class.

We have come a long way since surgery one year ago, last month. I understand how to handle MaryEmma situation better and MaryEmma is beginning to accept her condition and cope the best she can. I really hope we can get a few hours in every week... it made MaryEmma feel so good to be a part of something normal. Until next time...

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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