Hi! I wish I had parents like you in my class! I know that you feel that your child is getting lots of services, but really she’s getting about what everyone else is getting. Most kids do receive speech 2×30 and OT 2×30 so don’t feel that your system is already doing so much for you that you can’t expect more. It is clear that your child needs additional help for many reasons. You aren’t asking for this because you feel that you have a right to it, you’re asking because your child needs it.

I would definately see if you can enlist the help of your pediatrician. I have had parents get letters from all professionals involved with the child stating, if they believe it to be true, that their child needs a one to one for ______ reasons. Some professionals are also willing to attend IEP meetings with you to help support your request.

If you aren’t listened to, then request documentation as to why they are refusing a one to one. Let them know that you will seeking legal advice and will also be requesting an educational advocate.

Persistance is key. Legal support is important. Research is extrememly helpful. Look into what other families dealing with this same genetic disease have requested/received from school systems and use that to support your case.

Go in expecting the school system to do what’s right.

I wish you all the luck and the energy you will need on this endeavor. Keep at them!

You are doing the right thing by requesting her IEP be re-evaluated. I would suggest you keep a journel (and ask her teacher to do the same) of behaviors that require the immediate assitance of an adult/teacher to handle. This will help show the level of assitance and guidance your child needs to get through the day. As part of the re-evaluation, be sure to ask for an observation by a child psychologist of the behavioral specialist for the district. This will get you an opinion from folks who can not only support the need for an aide (depending on their findings) but may also provide other ideas for the current classroom staff to address her needs.

I would ask what is the current size of the class and how many adults (teachers and other aides) are in place? If you have a ratio of two students to one adult, it may be tough to get an aide, simply because , in the eyes of many programs, she has one (or half of one). Don’t let that stop you though. Getting the aide now will make it easier for when she transfer to another program once she reaches the age of 5 or 6.

PS..I am a Chicopee girl too!!

OK if your husband is a special ed teacher he should know that the first thing you do is request an IEP conference !!!! You say that you have a diagnoses for your child who gave you the diagnoses?? Get everyone that you know who deals with your child OUT side of school give you a recommendation for what you want. Has your daughter ever been evaluated by a nureo-psychologist?? IF she hasn’t get her evaluated privately so that you can make sure of her diagnoses They are the only ones that I trust to do a competent evaluation of academic and social levels. One you have the evaluation make sure that the person that does it gives you their recommendation for her education. Also get a recommendation from all of the health professionals her pediatrician, her neurologist, her OT and anyone else. While this is going on you should go to your states VESID web site and find a school who deals with the severely developmentally delayed. Find out the admittance policy and ask to make an appointment to check out the school. When you get the recommendations from all of the people tell them that you want the ratio of children’s to match the school that you choose. I know of classes that are as small as 6:1:1:1. which means that there are six children to three teachers the class room teacher an assistant teacher and an aide. If you want a para to be with your child one on one you will have to get that into the IEP and the best way to do that is to have it in all of the recommendations that you will get. Every thing that you want in the IEP make sure is in the recommendations. This is the way that I got my daughter to ge the specific services that she needed and my cousin got the services for her son who has apserger’s syndrome. We made sure that every specific thing that we wanted was recommended by the children’s health professionals that weren’t affiliated with the board of education. The school boards take those recommendations seriously.

Have you looked into other venues other than the school. I answered a similar question to this a few minutes ago. We have personal care attendants in Minnesota. I don’t know what they are called in other states.

I am a nurse of a young man who receives 24 1:1 nursing care. We have children who receive medical care from nursing assistants or PCA’s due to medical conditions. These people can be ordered to go anywhere with the child when the parents are not available to provide physical care including school.

In our state this is determined by the county health nurse. I don’t know where you are from but maybe try there to see if there are other resources that can help.

My severely disabled son in middle school choked on a bead and thank God a para in the room seen it and did the Heimlich Maneuver. The school district still refused to give him his own para. I received this advice from an advocacy group. I had a meeting with the principal, the director of the special needs program, and the teacher. By the way the teacher was totally on my side. During the meeting I made them aware of the situation and asked for a one on one para for him. Of course they said they wish it was possible, but there just isn’t money in the budget. The next step was to write a letter. I put in the letter everything we talked about during the meeting and asked for a para again. I sent this letter to the principal, the director, and all the members on the school board. At the bottom of the letter I put cc: and the name and address of an attorney. I just picked one from the phone book. I never retained him. I just put his name in the letter. I never said in the letter that I retained him. This is what the advocacy group said to do. Well it worked. The district suddenly came up with the money. The teacher and I had become friends so I shared with her what I was doing. She said that the principal came to her and said, “she really means business. She even has an attorney”. The teacher and I had a good laugh about it.

You could try one of two options, depending which one pertains to your child. You mention safety issues. What is the current ratio and is their a specific concern for your child that is beyond what the staff can provide. On occasion I have seen them given to kids with frequent seizures who might fall off of school equipment or if the child is in a wheelchair and is totally dependent on adult for feeding, movement, toileting etc. It has to be an extreme safety issue though beyond what the current classroom can handle.

The second approach is if your child is failing to make adequate educational progress towards their goals and needs more intensive instruction throughout the day. If your child is not making appropriate educational progress on her goals and objectives you can try to request a 1 on 1 under the assumption that she needs more intensive constant intervention to meet her goals.

At the very least since your child really does have a lot of services ask that the OT and speech person provide consultation to all of the classroom staff on how to work on your child’s goals throughout the entire day. Ask that they do push in (if they are not already) so that can model appropriate strategies for facilitating speech and motor skills in the classroom context.

Educationally it is likely that all kids could benefit from having a 1 on 1 support, but legally you have to prove that you child cannot benefit from their education without one or she has such safety and health issues that are extreme enough to require constant monitoring and that without that constant monitoring their is a high probability your child would become injured or hurt (beyond the normals bumps and scrapes.)

Having read the previous responses there is little I can add from a Texas Sp. Ed. teacher point of view. You have good advice here, take it.

From what I have seen in 19 years it is documentation, documentation, documentation. Keep records, get documentation of the need from all service providers you can especially your doctor, then demand that the administration have Sp. Ed. supervisors and administration up to and including the Sp. Ed. Director present at the meeting. Present your case and if necessary pitch what we call a “hissy fit”!

It’s amazing what parents can get when they REALLY press the issue. If this isn’t successful keep calling ARDs at every variance of the IEP until finally they will cave.

They will eventually cave on ANYTHING except alternative schooling. Long, long, long uphill fight on that one but it is your threat of last resort. You might threaten that as a bargaining chip to get what you need.

Well, that’s my experience, for what it’s worth.

Good luck and keep fighting for what you need.

As you know, Federal Laws require that a child be given an education meeting the needs of the child. Try talking to your State Dept. of Education. Look for advocacy groups..we have several in Illinois. Look under Dept. of Mental Health. You are not asking them to do it for everyone and that’s a rude answer, my dear. The ONLY child you are concerned about is YOURS, and you must be like a lion and protect your child. She gave you a cop-out answer. Find out what your legal status is for getting your child the help she needs, derserves and is legally entitled to. Don’t be afraid to do battle. I have a 32 year old with C.P…..I fought many battles, as he is very, very smart and graduated with honors, though very handicapped. You only have one chance to make this right for her. Put on your battle gear, but approach with a soft voice. Just insist on your rights.

UGH, the usual crappy lines. Tell them you are not talking about every child, you are talking about YOUR child. And what happened to the I in IEP ?

Just one person can’t make decisions for the child. The whole IEP team is suppose to decide.

Write to sped director and request ‘prior written notice’ for refusal of aide, and for why he made this decision without the whole IEP team agreement.

By sped law they HAVE to give this to you. They list the LEGAL reasons why they refuse on it. If they do not have legal reasons, after you ask for the prior written notice they will give the aide because they will not put illegal reasons in writing.

If your state has an Early Intervention Program, like my state Tennessee, I would check into that. Until 21, they offer developmental support and an assigned caseworker to your child. What state is this for? Also, good for you getting your child the best that you can. You sound like a wonderful mother who strives to break barriers for you child!