advocacy chat tonight

Hi Socks, it’s me Lindy the special ed. student that you gave such great advice to. Well I have another problem, but it does not deal with LD only. It is about a child who has spinal- bifida and is LD. His mother came up to me in school today where I was doing one of my labs. She knows I am a special ed. major. She asked me if she could talk with me a minute. I told her I was not through with school yet, but I would do the best that I could. She said her child who is in the 2nd grade is in an inclusion class and has an IQ of 97. She said he has always done well in school. She has had to make modification for him, but she doesn’t feel he is getting the education he should. She said everyday the class has to write at recess because they have been talking in class. The students can’t play on the playground, but they go outside and write for an hour, while the other 2nd classes are outside playing. The students who are not in trouble have to suffer right a long with the ones who are causing all the trouble. Her son has never been in trouble in class for talking or anything else and she doesn’t feel he should have to miss his recess everyday for something he has not done. The teacher tells her how wonderful he is doing. She said out of 46 worksheets he only has his name on them. She said she talked with his teacher and she said he needs one on one because he is so slow. She can’t hold up the class just for him. His mother said he in very capable of doing the work, but it just takes him longer. But that is only half of the problem. He has to be catheterized every 4 hours, because he is paralyzed from the waist down due to his spinal-bifid. Well she said he doesn’t get to the nurse when he is supposed to. When the teacher notices he has not been is when he has leaked all over his clothes. She has said something to the nurse and the teacher about getting him to the nurse’s station every 4 hours on time, but they said they forget. She asked me if she could have the school hired a full time parapro just for her son so he would get the attention he needs? I don’t know what to tell her. Could you please give me some advice? You were so helpful when I needed help before and I told you I would probably be bothering you again. Thanks so much.

Ahh,friend:-) Never a bother! Okay,a couple of issues here.

1. If the Mom is seeing blank worksheets,she needs to be asking for some type of documentation of how much the student has progressed. Teach needs to be showing some data. When was the last assessment of his progress?

2. He is doesn’t have an IEP,he needs one, or a 504,or a health plan. Not sure what kind of modifications to suggest here,unless I know what kind of plan the kid has educationally.

3. Okay now on the self cathing. If this child needs to be cathed every 4 hours,if their is a prescription from a physician then the school nurse is responsible for making sure to FIND the kid. This is the Nurses responsibility.It’s a medical order,and carries health concerns if not carried out. 1. being if this child is dry in between caths,then he probably takes meds to prevent leakage,if he is leaking his bladder is way over full.
2. Spina Bifida kids who cath do not feel when their bladder is full,they do not have the sensation to tell.If their bladder fills too much,the potential for the bladder to burst is possible.
3. If this child is starting to self cath,and the bladder remains full for too long of a period the muscles in the bladder wall weaken,and the ability to be able to stay dry between cathing can be a problem later on.
4. There should be a plan to help this child learn to cath himself. The school nurse should be having a plan for this,and following it?! This is a lifeskill,school should be following a plan to help this lifeskill,it is educationally relavent. Especially since where does he spend most of his time?
Okay,believe it or not,I am a orthopedic nurse who taught many a 6 year old how to cath themselves. Don’t know what state your in,but tell this Mom to call the nearest Shriner’s Hospital,ask for the myelodysplasia nurse,tell her or him you want the child evaluated to learn to self cath. It is totally free of charge,Shriner’s that is.
5. Now about the Para. If the school wants to pay another professional to comply with the plan,then this is what they will have to do to follow the law.
I would tell this Mom that getting a letter from a medical Dr. with clear directions and the potential health risks that could develop from not following those directions,should go a loong way to getting the extra help. Frankly the school could figure it out,but if not,they will have to do something.

Until you can get help from the Shriner’s or figure out a better plan, why not buy him a cheap watch that can be programed to beep in four hours. That should remind his dizzy teacher to get him to the nurse.

You know what Annie? What a fabulous idea:-)

I so agree…I have a nephew with Duchennes, and his biggest asset is…his MOUTH. “EXCUSE me…” and then, as he has been taught, he tells them what he needs…this is natural for him and his parents have just built on it, but any child can be encouraged to speak up. NOBODY should have to endure what this child is enduring. I really agree with empowerment — if he has to suffer, he might as well learn how to get help.

I might add that this nephew also has developed the smoothest manner of answering ‘stupid questions’ that I have ever heard. And, if you are physically different, this is another ‘lifeskill’ that is essential!
best wishes,
Elizabeth

You are so right!!!!!! I will tell her. Better than that let the teacher and nurse wear it.

That would be a great idea, but this child doesn’t know when his bladder is full. And you know how most children at this age are. Having to go to the bathroom is the least of his worries.