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#10274 - 10/04/04 08:47 AM Starting School what should I tell the teacher?
Bare Carmen Offline
Member

Registered: 07/14/04
Posts: 56
Loc: Australia, Brisbane
Wisnon is starting school next year and his teacher has asked me to tell her as much as I can inregards to Lamellar. I told her all that I know but he has never been to "big boys school" before and I am not sure about a lot of things. What about sports? Lunch time play? Creaming? The sun? Heat? The school grounds are large, so how could the teachers keep an eye on him. I am not sure if he would know when he is too hot or too dry. How did all you mums do it????? Please tell me all that I need to tell the teachers.
Carmen

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#10275 - 12/31/04 05:03 AM Re: Starting School what should I tell the teacher?
robinlynn9901 Offline
Member

Registered: 12/30/04
Posts: 40
Loc: Scotia, NY, USA
Hi, My name is Robin and im not sure how much help I can be since we have EHK and not Lamellar, but maybe I can help in some way. When my son started school the first thing I did was request to have a casual meeting with those that will be interacting with my him; the teacher, assistant, school nurse, principle and any therapy people he was involved with. When we sat down for the meeting, I tried first to tell them what it was. In our case- its simply dry skin. The skin grows really fast and sticks to us so its visible to anyone. I told them that under everyday circumstances it didnt hurt, but a fall likely will. I told them he's uncomfortable using his knees and elbows and will adapt around it. I gave them a tube of bacitracin (our best friend) and told them that if he gets a scrape, they can apply a little to the affected area, but that bandaids won't stick and that air is best. If heat is a concern for you- Im not sure how your son is, but mine get red in the face and itchy when they get hot. Simply tell the staff to descretely check him when hes outside- so he can play without being given too much attention. If he is showing signs just have them bring him to a shaded area or indoors for a little while. When they asked what to tell the other kids, I simply said to explain it to them so they can relate. Ask them if they have dry skin in the winter (most will say yes) and then tell them that's what your child has but worst and it doesnt go away. This explaination works well and helps kids relate so its not so foreign. Help your son by taking his everyday life and just adding school. Think about what happens on a daily basis at home and just tell them about it. This is the most helpful. And dont worry too much- he will be fine. One of the best things you can do is be sure your son understands himself and what he has. Teach him to tell others so he begins to feel comfortable with himself- then he will learn his own limits and he will know what his body needs and when.
I hope that helped some. Feel free to contact me if there is anything else I can offer you. Sincerely Robin

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#10276 - 12/31/04 07:45 AM Re: Starting School what should I tell the teacher?
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
I did the same as Robin as far as meeting with the office staff teacher nurse ect.. I also found it helpful to buy the Teacher hand guide book from the F.I.R.S.T web site. I went through it and highlighted all the stuff that applied to Ryleys type in her case Lamellar. I made sure they knew she couldn't sweat and needed to be watched when she starts to get red ask her to come in and get a drink to cool down for a bit. She got to take a friend in with her also. I use a self cling wrap from Petco to wrap cuts and splits and I gave a supply to the school for her also. They call me always before putting anything on her cuts to make sure it is ok. She gets to lotion herslef when she dries out in the nurses room and they put her drops in her eyes.

As for the kids in the class we read Spookly the square pumpkin to them. A great book that talks about being different. The kids love it! I also take her cooling vest, mister, lotions, snd whatever else she uses that school that is different to them and let the hold them and see what they all did. We have had only one problem with a little girl and when I talked to the teacher she took care of it. The little girl said sorry the next day and they were fine the rest of the year. Ryley is now in 1st grade now and does very well. If you have any questions or want to chat feel free to e-mail me also.

Shauna

[This message has been edited by ShaunaJ (edited January 01, 2005).]

[This message has been edited by ShaunaJ (edited January 19, 2005).]

[This message has been edited by ShaunaJ (edited January 19, 2005).]
_________________________
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#10277 - 01/17/05 08:56 PM Re: Starting School what should I tell the teacher?
charmed7 Offline
Member

Registered: 03/07/04
Posts: 165
Loc: Hartford, CT
I wanted to make one comment. Our schools require a note from the doctor stating it is acceptable for the nurse to put lotions and sunscreen on my son. You may want to look into any obsticals like that before he is in classes so you're prepared. Good luck.
_________________________
I have a gifted 14 year old boy with X-Link Ichthyosis, Type I Diabetes and Bipolor Disorder.
I have a 7 year old girl who is uncanningly healthy
I have a spunky 1 year old who doesn't quite understand the word "No" yet.

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#10278 - 01/19/05 01:13 AM Re: Starting School what should I tell the teacher?
Terilee Offline
Member

Registered: 01/17/05
Posts: 13
Loc: Beaverton,OR, USA
As someone who was misdiagnosed all through her childhood,Ican't stress enough how important it is that the teachers and staff have as much information as possible. And in some cases they really need to keep an eye on some of the other kids. as you may have already experienced, kids can be incredibly cruel and I spent years being called names by both students and teachers since they just assumed that because I had all these scales,peeling, and bleeding and the occasional odor problem that I couldn't contol, that I was dirty and didn't practice good hygene. That along with the torture of being scrubbed with brushes, steel wool, bleaches, and even borax (yes, borax)to try to control it, made my elementary years a real living hell. It was a real releif to find out that my original birth dx of harlequin was true (they changed it because I survived.) All I can say is keep a very close eye on your child's moods, they won't always tell you they're being picked on.

As always forwarned is forarmed and so the more info you can give the school staff the better. Otherwise just love that dry little kid to pieces and hold him just as much as he can tolerate.

Good luck and keep the faith!
_________________________
Terilee

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#10279 - 01/21/05 01:03 AM Re: Starting School what should I tell the teacher?
Bare Carmen Offline
Member

Registered: 07/14/04
Posts: 56
Loc: Australia, Brisbane
Thanks you all for caring about Winson. I have spoken to the school and they have done all they can to understand and care for Winson. They have also put on an aid for him, his teacher rung us and told us that the person they've put on is the same child care teacher Winson had last year. It just so happened that she has now left the child care and went for the job at Winson's new school. Praise the Lord. She didn't know that it was Winson till after she got the job. I don't have to worry about that anymore. I am now just worry about the words from other kids. Love Carmen

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