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#9982 - 08/20/03 12:41 PM Shauna...how was Ryley's 1st day?
Robin Offline
Member

Registered: 02/20/02
Posts: 76
Loc: Irmo, South Carolina USA
It was probably far scarier for you than for her. Did she like it? How was the teacher...the other students? Did she seem comfortable? Are you holding up ok?

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#9983 - 08/20/03 05:04 PM Re: Shauna...how was Ryley's 1st day?
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
Funny you posted this. Ryley Starts school Sept 4. I called to see who the teacher was, they don't know still. i asked to set up a meeting with the Princepal, school nurse, teacher and me when they did the teachers and the schools sec. told me I only needed to talk to the teacher and she would decide if we needed to involve the nurse and princepal. I am slightly ticked and that is putting it nicely.

Then today I get a phone call asking if I want to put Ryley in their Head Start Program. I don't know if anybody knows about this program. It is smaller class sizes with 2 teachers and is supposed to be like a normal Kindergarten. I asked my Aunt who teaches and she says it is for low income kids who don't get to do things like go to the zoo or even grocery stores. That isn't Ryley at all she goes more places then I ever did. She also said it is for kids that are getting ready for kindergarten. Again Ryley is way ready she knows the alphabet and can write it. She can also tell you the letters when doing flash cards. She spells her name and writes it and her phone number.

I think they want to put her in there so they don't have to bother with her, or they want to protect her. She doesn't need protection or special classes. She just wants to be in normal class and treated that way. She is just like any other kid, but with a little more limitations then others. I don't know what to do or how to get my point across. I just want her to experiance school like the oldest did and do all the normal kid stuff. Any help or advice is most appriacated. Thanks in advanced.

Shauna & Ryley
Johnson
_________________________
Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

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#9984 - 08/20/03 06:58 PM Re: Shauna...how was Ryley's 1st day?
Ellen Offline
Member

Registered: 07/08/02
Posts: 38
Loc: Cleveland, OH USA
I would start off by asking why they want to put her in Head Start. Then I would make an appointment to see the princepal. Any parent should be allowed to see the princepal for any reason. Explain your concerns to him and STAND YOUR GROUND. Then make an group appointment with the teachers, the princepal and the nurse. Tell the secretary to stuff it!

The princepal in my school made all the difference in the world to make sure that I was treated fairly. The rest of the staff seemed to take their que from him. The teachers were great and so was the nurse.

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#9985 - 08/20/03 08:58 PM Re: Shauna...how was Ryley's 1st day?
Anonymous
Unregistered


Shauna,
I'd call back and tell the secretary that if it were up to her to decide who needs to see the nurse, she would be the nurse! I basically agree with everything Ellen said. My wife is a child development specialist and is assistant director/lead teacher at her school where she runs the infant/toddler room. I know I have heard her say something about the "headstart" program but can't remember what exactly it was. When she gets home tonight I'll ask her and let you know.
Keith.

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#9986 - 08/21/03 04:51 AM Re: Shauna...how was Ryley's 1st day?
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
I would really like to tell her where to go, but she goes to my church. Which makes me even more ticked because she knows all about Ryley, and is still acting like she is no big deal. It is a big deal to me though. Yes Ryley is a normal child she has feelings, she gets in trouble, she likes to play and even drives me crazy like her older sister, but she requires a little more attention on the physical side. She can play but for short periods of time in the heat. She gets cracks that require attention and wraping. She needs eye drops and lots of water at any given time. Those and more are why I need to talk to the Teacher, Nurse and Principal.

I am going to call tomorrow and if she trys to tell me not to worry I will just go to the school and chain myself to her desk tell I get my meeting (ha ha ha). Humor gets me through times like this.


I did tell the lady from Head Start that Ryley and I don't think this class is for her. I told her Ryley belongs in a normal class and that she can't be protected her whole life. Ryley needs to be able to make her own mistakes and learn from them, but I will always be there when she needs me. She says mom I just need to get in and go for it; (must be talking with grandma again).

Ryley is really excited though, and I am excited for her. I think kids will be drawn to her sweet personaltiy and look past the skin. She might have one or two that will try to bring her down but I think she will handle it just fine. Then again she might not have any kids pick on her either. Feel free to give any info or advice I am greatful for everybodies input and think you are all wounderful. I am thankful for this sight and that we can all support each other. Thanks again

Shauna & Ryley
Johnson

P.S. I will keep everybody updated and write about her first day as soon as she gets home.
_________________________
Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

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#9987 - 08/21/03 05:36 AM Re: Shauna...how was Ryley's 1st day?
Sirena Offline
Member

Registered: 05/04/03
Posts: 57
Loc: Wasilla, Alaska
Hi Shauna,
It sounds like the secretary is making decisions she shouldn't. You do not have to ask to see the principal or nurse, you tell them you need an appointment. They have an obligation to listen to your concerns and I am sure that they will. Head start is for low income, often high risk kids. Ryley has some special needs but that does not make her a "special needs child". I agree with you that she needs to be in a regular classroom. Remember that is the public school system the sqeaky wheel gets the grease. I see it everyday. Never take no for an answer when you are advocating for your child. Good luck, I am sure it will be fine.
_________________________
Michele Menzia

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#9988 - 08/21/03 12:32 PM Re: Shauna...how was Ryley's 1st day?
Anonymous
Unregistered


Shauna,
I talked to my wife about the headstart program, she's not sure about every state in the US but here it is not for low income kids. Headstart is for kids who technically aren't old enough to start school yet even if they are smart enough. Unfortunately it is also for kids who are old enough but not ready for school yet. As far as it being for low income families, has nothing to do with it. It probably got labeled with that because more low income kids are in it because their parents both work and the kids haven't been taught enough yet. If Ryley isn't old enough to start in her class they may be able to put her in the headstart program, if she is old enough demand she be put in the "regular" class. Hope this helps.
Keith.

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#9989 - 08/21/03 03:07 PM Re: Shauna...how was Ryley's 1st day?
Robin Offline
Member

Registered: 02/20/02
Posts: 76
Loc: Irmo, South Carolina USA
Shauna...at Jordan's school, they have a program in place for special needs kids called IAP (Individual Assessment Plan) or 504 (which is code for The disabilty act)although Ichthyosis is disabling at times, it's not totally a disability...
anyway...since the 6th grade, Jordan has been in this program here is South Carolina
I meet with The pricipal, the school psychologist, nurse and teachers...so that I can give them the booklet on Ichthyosis and ask for certain considerations for Jordan...she carries a bottle of water with her, she needs to be seated near the front of the room (her ears get stopped up with skin and wax)she can apply lotion as needed during class and may dry out worse during during the winter from the heaters in the rooms, she also needs to be limited to time outside because of overheating. If they have any others questions, they can email me directly at home...other than that, I ask that Jordan be treated just like any other student...because that's all she ever wants, to fit in and be normal. This secretary is over stepping her bounds and making decisions for you, Ryley and the school...now it's time for you to tell her and the school what Ryley needs from them...she's not an invalid, nor is she mentally challenged...she simply needs consideration concerning her condition...thats all...plain and simple....I went through exactly what you are dealing with right now...and I'll tell you what...this will be the first and last time it will happen...the school just doesn't know any better...so you have to show them

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#9990 - 08/21/03 07:22 PM Re: Shauna...how was Ryley's 1st day?
Alyssa Offline
Member

Registered: 08/12/03
Posts: 16
Loc: Roselle, IL USA
Shauna,

Upon looking for information for my mother who has EHK, I came across a section on the FIRST Website that reminded me of these series of posts to you. The page provides information and tips to familiarize your daughter's schoolmates and teachers with ichthyosis. You may find it useful. It can be found at the following URL:
http://www.scalyskin.org/content.cfm?ContentID=68&ColumnID=10

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#9991 - 08/22/03 01:12 AM Re: Shauna...how was Ryley's 1st day?
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
Shauna, my son has EHK and is going into the fifth grade. By profession, I teach children who have disabilities. I was lucky when Evan started school. He had the same kindergarten teacher I had. In addition, I worked in that building. I was able to explain all about Evan's condition and keep an eye out for him. When Evan entered third grade, we moved and I worked in a different building. That was hard on all of us.

The point to all of this is that I think most people do want to do the best for Ryley, they just don't know what that is. That is where you come in. Ryley probably does qualify for special education services under "other health impaired". Evan does. We declined those services because like you, Evan did not need help with academics. At the end of third grade, I had some concerns about Evan and his school work so we did (the school staff with my husband's and my input) what is called a Multifactored Evaluation. He did not qualify for any additional services except for being other health impaired. What I thought he might have qualified for was Occupational Therapy or Physical Therapy but his deficits in those areas were not severe enough. We did though write a 504 Plan like Robin discussed. It is part of the Americans with Disabilities Act. In that we wrote the adaptations that Evan needed to be more successful and comfortable in school. As a team, we made a list of the things we thought Evan needed and wrote them into a plan.

Evan did not have the 504 plan until he got a little older because I thought the teachers would take care of him when he only had one teacher. As he gets older and has more different teachers in the school, I felt that it should be in writing so that everyone would know.
One last bit of advice coming from the teacher side of me. If at all possible, go into the school believing that everyone there wants the best for Ryley. I think that makes communication go better if the school doesn't see you as coming in and pushing right off the bat. As a parent, listen to everything then make up your mind and push when you feel you need to. Good Luck to you and Ryley. I know it is hard but like Robin, once the school staff is educated, I think all will be easier.

Deidra
_________________________
Dee

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