Educational Discussions

Below are educational discussions from members of the FOD Family Support Group which may be of help in determining how to handle your children's educational needs. Please keep in mind that laws regarding rights and procedures may vary by state.

—If your FOD child is entering the public school system and you want a 504 plan in place you should contact your school district's special ed or special services director to set up a meeting to voice your concerns. You may request to have the school's principal, nurse, and kindergarten teacher at the meeting to go over the protocol you want followed in case of a problem with your child...i.e. signs of low blood sugar, how to handle it, who to notify, etc. The formal protocol letter and a written statement from the family would be helpful ... (contacts and phone numbers, notify of illness occurring in that particular classroom). Make it as detailed as you want.

A Section 504 is for children who have a significant problem that affects a major life skill, in this case, school. Problems can be illnesses, motor delays, etc. If my son did not have a 504 for the speech and fine motor delays that is under special ed services, he would have a 504 for his unspecified FOD diagnosis and seizures. I have a written procedure for the teacher and school nurse to follow in case of hypoglycemia or seizures in school. Our son is going into kindergarten in the fall also. He was getting his speech and OT services through a district pre-k program. The elementary school is aware of his needs.

Maria
Undiagnosed FOD mom

—I am struggling with our school district for my son's needs. They feel he is going to be ok with a 504 Plan and I feel that he should continue to qualify for special education under IDEA with the category of Other Health Impaired. I am going to mediate with the district on July 21. I have some very good merits that I feel are fair principal. We'll see what happens.

If your child has any suspected delays I think that you should request an evaluation by the school. The request needs to be in writing and should be sent to the principal and your district Special Education Director (remember to keep all copies for yourself, also). The school can test them for any O.T., Speech, P.T., L.D., or other services that they may qualify for. If she/he is not experiencing any significant delays, you can still request a 504 Plan be developed after your meeting. Your 504 plan can be as detailed as you want; don't let the school tell you that it is too much. ADA will support you. If you need assistance you can call the Office for Civil Rights. You can contact an advocacy group in your area for help with this plan.

If you would like more information the Parent Education Project, in West Allis, WI has a beautiful packet (64 pages of easy reading) on 504s. If you are interested, their phone number is 414-328-5520. I have always had a frustrating time dealing with our schools for my son. I know how it feels to be unheard or misunderstood! I have two other children who have never had any special needs and there is certainly a huge difference; although, there shouldn't be. If you are interested I could send you a copy of my son's 504 draft. Let me know if I can be of further help.

Sheryl
Unclassified FOD mom

—My daughter (MCA), age four, is supposed to start kindergarten this fall and will be put into the school daycare at the end of this month. I have been working with the district RN and trying my best to explain MCAD to her and let her know what needs to be done to properly take care of my daughter and she just doesn't seem to understand the seriousness of this. The first conversation with her I thought went pretty well until she sent me a packet of information that she was sending to the school health clerk and teachers to "educate" them. It was all about diabetes! I e-mailed her a few weeks ago telling her how alarmed I was with this misunderstanding. I told her that the only thing she had in common with a diabetic was the tendency for hypoglycemia and even then that is comparing apples to oranges. A diabetic's blood sugar can be brought right back up and stabilized but not my daughter's. I explained to her that because she is not insulin-desensitized and does make insulin she will bring her sugar levels right back down. I told her that when she was ambulanced to the hospital with a blood sugar of 14 and put on a 5% dextrose IV, her sugar went back up to 88 and within 10 minutes was back down to 35.

Anyway, I say all that so that I can ask HAS ANYONE ELSE GONE THROUGH THIS??? I am soooo frustrated and don't understand why an RN can't understand but I can! I have an appointment with our new geneticist (we just moved here) on the 18th of this month and I told the nurse that I wanted her to come with us so that she could hear it straight from the doctor and if she had questions she could ask. Hopefully she will believe/understand the doctor. I was amazed that she said that she would go. I hope she gets it after this. If anyone has any suggestions or ideas please let me know.

Michelle
MCAD mom

—That is very alarming that the nurse confused MCAD with diabetes, although sometimes I'm afraid that people just don't know what to do if they don't have a frame of reference and have never experienced something before. It is good that she agreed to go to the doctors with you. What I have done for our son (VLCAD, going into 2nd grade) is prepare a write-up about VLCAD in layman's terms and exactly how she is affected in school, including what accommodations need to be made for her. I then had a meeting with all people who would be involved with her (principal, OT, Speech Therapist, Special Ed Director, nurse and teachers) so that all of them understand. Maybe that might be a route for you, as personally I would not trust another person (even a nurse) to relay that information secondhand to the people who will be working directly with your daughter. Let me know if you would like to see the letter I prepared for school and I would be happy to email it to you (or anyone else who is interested).

Dawn
VLCAD mom

—I can sympathize with you!! My daughter, MCAD, 5, starts to school this fall. We had a letter with us when we went for registration explaining MCAD and stating we wanted to meet with the teacher BEFORE school starts. The school nurse was going to make a copy to give to the principal, but she didn't while we were there. When we did not get a reply, I called and requested the principal call me back to discuss my daughter's health problems. The secretary called me back, and wanted me to explain to her what the problem was. When I told her I needed to meet with the principal and Katie's teacher, she stated they had not assigned classes yet.

I am going to give them until the week before school to call me back. If they haven't called me then, I am going to call the Central Office and get them to set me up with an appointment. (They'll probably claim they have meetings then and say they can't meet with me.) We have been blessed with Katie; only extreme stomach viruses and one case of strep have put her in the hospital. But I have I terrible fear of a secretary leaving my child waiting in a school sick room when they need to call me, my husband or SOMEONE to come get her. If you have any luck with your school, let me know. I need some encouragement!

Gail
MCAD mom

—My daughter has MCAD. She started kindergarten last year. She had a great year. I met with the school nurse and her aide before school started. I gave them the emergency protocol sheet and family information sheet about MCAD from Dr. Roe. I informed them that I needed to know immediately if she vomits or has diarrhea. They knew that she could go "down hill" quickly. She also had to have forms filled out for taking medication at school. Once again, there was no problem with this. After lunch, she would go to the office to see "Miss" Annie to get her carnitine. Medicine and emergency cards went with her on field trips also. She also has a medic alert bracelet. I met with her teacher and told her what to do if she got sick at school.

The school was even to contact me if another child in her class had a stomach virus. Our school requested that all students (K-5) bring a mid-morning snack to school. I supplied her teacher with the sugary cereal of choice - Froot Loops if she thought she was "too tired." I am so sorry to hear of your experience. Stay on top of these people until they understand. I know that the office got tired of seeing me before school even started. The only problem we had was when a substitute did not call us when another child got sick (on my daughter). She just let her wash up and change her shirt. Strep, stomach viruses, colds, and flu made their rounds through the school several times. She got strep only once, but she never quit eating so she did fine.

Melanie
MCAD mom

—Oh, I am so glad that my children are out of school. There are so many issues with which to deal, not the least of which is an FOD problem. For those of you who are putting your dear FOD children in school for the first time, I'm sorry for you. I could tell you not to worry, things will work out, but it wouldn't do any good, as you have to find out for yourselves.

The beginning of every year was a worry to me, but when I look back, I have to smile, as it worked out and my child almost always came home smiling. Different school systems are just that....different. Each state, county, city or town has very caring AND very indifferent individuals to deal with and HOW you handle them will greatly reflect how soon you will get what you want. My mother, when she was teaching me the ways of the world, always said, "Kill them with kindness." That is advice that has taken me through some pretty difficult times when dealing with the school system. I hate confrontation. Just hate it! That's too bad and a personality flaw that has done me in more than once. However, I have learned much in my many years (with four children) dealing with the school system.

Be firm. Say what you mean, and mean what you say. Be persistent. Don't be obnoxious!!! Be nice, not nasty. Think through what you want and practice at home what you are going to say. Don't get put off by the school secretary. SHE is the one to kill with kindness. You KNOW what you need to make school a pleasant experience for your child. (Don't ever EVER talk in a negative way about anything to do with the school in front of your child....EVER.) Call the county office if you need to and then call the state if you need to, and know that you have the right to do that. These same people, who block you, are the same ones who would be screaming at the top of their lungs if it were their child.

Be a room mother/father, if you don't work or can take off work. Volunteer for everything. I was a computer mom, on the school advisory board, volunteer for the teachers any time they needed something done (volunteered by my children a lot), and room mother for twenty years. I loved it and wanted to help and do my part. Then one day, I needed THEM. I needed help for my child and they were pretty good about giving her what she needed. Was that because they knew me so well??? I don't know, but it didn't hurt.

Learn what your child's rights are in school. The ADA is a good place to start.

If you are in the school, and we all should be involved, you can see what goes on, feel the waters, so to speak. You can see how the other children react to your child, how the teacher treats your child, what your child's needs are and what you can do to help them. Oh, by the way, do that at a distance from your child. Remember, mother rhymes with smother for a reason!!!

Continue to share your ups and downs about school with your FOD friends so that they may benefit from your experiences. You'll find your way, I'm certain of it. Along the way you'll teach the teachers and may learn something yourself. With all of you working together, your child will be fine.

I'll be praying for you.
Mary
Adult LCHAD mom

—United Kingdom GA2 x 3 'Working with the schools to get what your child NEEDS!'

Hi Everyone in the FOD Family Support Group. My grandchildren, Jamie (9), Lewis (2½), and Emma (1½), all have GA 2 or MADD. To say the least, we have been overwhelmed at times with all of their needs (i.e., medical needs due to residual effects of late diagnoses), but this time we have GOOD NEWS to report!

The good news is, that after five years of talks and meetings with the Local Education Authority, they have decided that Jamie, because of her medical needs, should have a nurse with her so that she may attend her new mainstream school with safety. But it really has not been a smooth ride. It is the result of attending meeting after meeting for 5 years! Persistence is important!

In order to come out on top at these meetings it is vital to arrive at them prepared and ready to argue your point calmly. If a suggestion for a possible plan comes from one of the earlier meetings and you know it is unworkable for whatever reasons, the temptation will be to dismiss it ~ DON'T! Instead point out your doubts but agree to try it. Next, if something gets fouled up, document it ~ write it down including time, date, and staff involved. The school staff CAN BE your strongest support for your child, but they must be aware of your child's particular problems and concerns. Discuss your doubts with them and don't worry too much at this stage about the response you get. You'll find out soon enough whether they have listened to you or not! We have learned that the hard way over the years!

Go ahead and let them try THEIR new plan (but you know it's unrealistic) and watch it fall flat. The staff you have talked with will THEN remember your doubts and your suggestions. Remember that these are the people that have to make whatever plan is chosen work. You will need their input. Also never forget that they work for the people you are trying to influence (administrators). They know the way the system works and this is where they can help you.

Once you have a member of the staff that is able to understand your doubts and concerns ask them to make a report for you to take to the next progress meeting, because these issues are likely to be complex and having them written down will help others better understand your point of view. That staff member can be an advocate for your child at that next meeting and any future meetings. You now have someone that understands your child's particular needs and problems (i.e. medical, physical, cognitive, emotional etc) and because they know how the system works, you can use them as a sounding board and support person just before meetings with other teachers and administrators.

You now have two people in that meeting (yourself and the staff member) that are aware of the facts at grass root level and believe me it really makes things a great deal easier. A word to the wise ~ these meetings will most likely make you very angry on occasion so learning to redirect that anger and get a fair deal for your child is VITAL! It worked and is still working for us. Warmest wishes,

Woody and Company
(BIG HUGS FROM THE KIDS)
chazle@ukonline.co.uk

***Note from Deb: Thanks for all of your calls, Woody and Clare (GA2 mom) ~ I also REALLY enjoy talking with Jamie. Even though we can't see each other and it's sometimes difficult to hear her, I KNOW we are 'connecting' across the ocean in a very different and important way. Hugs your way too!