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EDUCATIONAL ISSUES BLOG

Hosted by Dena Hook
TS Alliance Director of Advocacy and Education

 

Instructions

1.  This blog is intended to address questions/concerns about educational issues only, such as IEPs, IDEA 2004, transitioning from school to the community, etc.

2.  To ask Dena a question, click on "Post a New Story" and a simple word processor-like pop-up box will appear. 

3.  In the "Story Title" line, please state your First Name and State where you live only.

4.  In the "Story Content" box, simply type in your question.

5.  After you're done writing your question in "Story Content," simply click on the "Post Story" icon at the bottom to submit your entry.  Please ignore the "Tags for This Story" box.

This blog is "moderated," which means your question will not automatically appear on the page until Dena is able to answer it.  However, if you need immediate assistance with an issue, please call Dena at (800) 225-6872 or email her at dhook@tsalliance.org.

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What is the difference between an Accomodation and a Modification?
9/14/2011

When you are talking to a teacher and they are talking about giving your child an accommodation and/or a modification do you know what they are talking about?  Below are brief explanations between an accommodation and modification.

 

Accommodation

An accommodation is basically, “how are we going to get the information into your child and how are we going to get the information out of your child to prove he/she understands the information?” If your child struggles in reading then the science book could be put on tape or someone could read the chapter to him/her. If your child is in a wheelchair, how is the school going to get him/her into the classroom? An accommodation helps a child to receive the information without the general curriculum being changed. Intervention specialists should be working with the regular education teacher on accommodations to the general education curriculum.

Examples of Accommodations:

• Allow additional time

• Allow student to take test in small group

• Have student repeat directions back to you

• Have directions read to student

• Enlarge test print

• Provide extra pencils

• Frequent beaks

• Use FM system for hearing

 

Modification

A modification is basically, “what part of the general education curriculum does my child need to learn?” A modification determines what part a curriculum assignment does a child need to learn. If a class is learning the parts of a plant and how it grows you need to ask, “Why does my child need to learn this?” Does your child need to know how to name the parts of the plant and how the environment affects each part? Maybe your child only needs to know how to plant a seed in soil, provide water and sun, and understand that is how a plant grows. Your child is being exposed to the general education curriculum but at a modified level. The intervention specialist should be working with the regular education teacher on what part of the general education curriculum your child needs to know to reach his/her fullest potential.

Examples of Modifications:

• Provide task on student functional level

• Reduce work to what is relevant to the student

• Omit higher math facts

• Simplify task

• Change rules to fit learner’s needs

• Give different test than the rest of the class

• Reduce number of concepts being taught

 

A modification changes what is being taught to the student. The only concept being taught is what is relevant to the student. It is still the general education curriculum but as the students functional level.

Is Your Preschooler Heading for Kindergarten?
7/27/2011

If your child will be going to kindergarten this school year there are ways you can help. Here are some suggestions you can do at home this summer to support your child in this transition. 

 

·        Frequently drive and/or walk by the school your child will be attending explaining that this is where they will be going to school. Point out what door they will use to enter the building

·        Arrange play dates with other children who will be in your child’s classroom

·        Work on skills such as hand-washing, dressing, and using the bathroom

·        Start working on a school time routine about two weeks before schools begins such as:

~ picking out their clothes

~ eating breakfast

~going to bed early

~getting up early

·        Talk about what they should expect and roll play being in a classroom

·        Have your child be part of shopping for school supplies and clothes

 

These are small things that you can work on with your child and help their first day of Kindergarten be less stressful for them and YOU!

Extended School Year Services
6/13/2011

The first thing I would like to do in explaining ESY is telling you what is not. ESY is not a one size fits all program. ESY should be based on your child’s individual needs outlined in the Individual Education Plan (IEP); preparing readiness skills for the next year’s school program; and  can be delivered in many different environments as deemed appropriate by the IEP Team. It is not a two week program offered to everyone. It must be individualized services following goals and objectives outlined on the IEP.

 

 ESY is special education and related services that are provided to a child beyond the normal school year in accordance with the child’s IEP, and at no cost to the parents. 

 

IDEA 2004 §300.106 states that:

 

Every public school system must:

 

1.      Ensure that ESY services are available as necessary to provide a free appropriate public education (FAPE).

 

2.      Have the IEP Team determine, on an individual basis that services are necessary for a child to receive FAPE.

 

3.      The public school system may NOT:

 

·        Limit extended school year services to particular category of disability

·        Unilaterally limit the type, amount, or duration of those services

 

How is ESY determined by the IEP Team?

 

As a parent you need to request your school districts policy on ESY.  Knowing what your school policy is will help you to best advocate for your child. There should be more than one criterion in determining if a child needs ESY. Many school districts use the criteria of regression/recoupment as the sole process in determining ESY. Meaning will your child have regression of necessary skills over the summer months. The recoupment is measured by children without disabilities. On average every child will lose skills over the summer months and it will take at least 6 weeks to recoup those skills lost. If it will take your child more than the average amount of time to recoup then ESY services would be considered by the IEP Team. 

 

There have been many court cases over the years throughout the district courts across the country setting up standards for ESY. School districts can use regression/recoupment but that should not be the only consideration in determining ESY. The IEP Team should also consider nature and severity of the child’s disability; are any emerging skills going to be lost because the child is at a stage in development vital to the mastering of the skill; and are the parents able to provide the necessary structure for the student over the summer months. 

 

Many times ESY is only considered during the spring (IEP season) in reality ESY should be considered months earlier around January or February. By having the discussion of ESY earlier, if there is a disagreement, there will be enough time for parents to exercise their rights under the Individuals with Disability Education Act 2004 (IDEA). You are part of the IEP Team and can request an IEP meeting at any time. When requesting an IEP let the school district know that you will be requesting ESY. By scheduling an IEP meeting earlier you will have enough time to work through any disagreements and/or exercise your rights under IDEA.

 

When preparing for an IEP meeting to discuss ESY, utilize the school district policy on ESY. Outline why ESY is needed and provide any evaluations and/or medical records to support your position on ESY. Know going into the IEP what your position is and that you are willing to exercise your rights as a parent under IDEA. If you would like to know more about your rights, go to: www.tsalliance.org and click on “school issues” then click on the publication “Parent’s Rights” and download free.

 

I do want to point out that ESY is not intended to provide instruction on all IEP goals only on the goals addressing the skills where regression will happen during the school vacation. It is also not provided when a child fails to achieve their IEP goals. If your child is not achieving their IEP goals the IEP Team should be reconvening ASAP after receiving a progress report that is showing lack of progress. Don’t wait until the annual IEP meeting to discuss your child’s lack of progress. You should be receiving a progress report on your child’s IEP goals as often as you receive your child’s report card. 

 

 

ESY
5/11/2011

The first thing I would like to do in explaining ESY is telling you what is not. ESY is not a one size fits all program. ESY should be based on your child’s individual needs outlined in the Individual Education Plan (IEP); preparing readiness skills for the next year’s school program; and  can be delivered in many different environments as deemed appropriate by the IEP Team. It is not a two week program offered to everyone. It must be individualized services following goals and objectives outlined on the IEP.

 

 ESY is special education and related services that are provided to a child beyond the normal school year in accordance with the child’s IEP, and at no cost to the parents. 

 

IDEA 2004 §300.106 states that:

 

Every public school system must:

 

1.      Ensure that ESY services are available as necessary to provide a free appropriate public education (FAPE).

 

2.      Have the IEP Team determine, on an individual basis that services are necessary for a child to receive FAPE.

 

3.      The public school system may NOT:

 

·        Limit extended school year services to particular category of disability

·        Unilaterally limit the type, amount, or duration of those services

 

How is ESY determined by the IEP Team?

 

As a parent you need to request your school districts policy on ESY.  Knowing what your school policy is will help you to best advocate for your child. There should be more than one criterion in determining if a child needs ESY. Many school districts use the criteria of regression/recoupment as the sole process in determining ESY. Meaning will your child have regression of necessary skills over the summer months. The recoupment is measured by children without disabilities. On average every child will lose skills over the summer months and it will take at least 6 weeks to recoup those skills lost. If it will take your child more than the average amount of time to recoup then ESY services would be considered by the IEP Team. 

 

There have been many court cases over the years throughout the district courts across the country setting up standards for ESY. School districts can use regression/recoupment but that should not be the only consideration in determining ESY. The IEP Team should also consider nature and severity of the child’s disability; are any emerging skills going to be lost because the child is at a stage in development vital to the mastering of the skill; and are the parents able to provide the necessary structure for the student over the summer months. 

 

Many times ESY is only considered during the spring (IEP season) in reality ESY should be considered months earlier around January or February. By having the discussion of ESY earlier, if there is a disagreement, there will be enough time for parents to exercise their rights under the Individuals with Disability Education Act 2004 (IDEA). You are part of the IEP Team and can request an IEP meeting at any time. When requesting an IEP let the school district know that you will be requesting ESY. By scheduling an IEP meeting earlier you will have enough time to work through any disagreements and/or exercise your rights under IDEA.

 

When preparing for an IEP meeting to discuss ESY, utilize the school district policy on ESY. Outline why ESY is needed and provide any evaluations and/or medical records to support your position on ESY. Know going into the IEP what your position is and that you are willing to exercise your rights as a parent under IDEA. If you would like to know more about your rights, go to: www.tsalliance.org and click on “school issues” then click on the publication “Parent’s Rights” and download free.

 

I do want to point out that ESY is not intended to provide instruction on all IEP goals only on the goals addressing the skills where regression will happen during the school vacation. It is also not provided when a child fails to achieve their IEP goals. If your child is not achieving their IEP goals the IEP Team should be reconvening ASAP after receiving a progress report that is showing lack of progress. Don’t wait until the annual IEP meeting to discuss your child’s lack of progress. You should be receiving a progress report on your child’s IEP goals as often as you receive your child’s report card. 

New Video
3/28/2011

Check out 15 Tips for a Better IEP is the first in a number of situational videos to support families in better advocating for your child's education.  Please check it out and let me know what you think.

Go to School Issues on the web site 

 

Best Always,

 

Dena

 

New Vedio's on Good Advocacy for Your Child's Education
1/25/2011

 

The TS Alliance is busy making Educational Advocacy Videos to post on the TS Alliance Website.  These Videos will be on different situations that happen in IEP meetings.  These Videos will instruct parents/caregivers how to be their child's best Advocate in each situation and what are your rights in each situation.  The first Video is tips on Advocacy strategies in an IEP meeting.  I will be announcing these videos on "Inspire" our on line social network.  To join “Inspire” click on “online communities” at the top of our web page. www.tsalliance.org .

Dena

 

 

Does you Child need Special Education Services?
11/15/2010

Special education is a set of services and supports provided to children with disabilities to help them progress in the general education curriculum. The Individuals with Disabilities Education Act 2004 (IDEA 2004) is an education law designed to ensure that children with disabilities are not only exposed to the general education curriculum but progress in it also though a free appropriate public education (FAPE).

 

When your child is diagnosed with tuberous sclerosis complex (TSC) the medical issues can be overwhelming and dealing with the school is the last thing you want to do. It’s bad enough that you practically have to earn a medical degree to understand everything going on with your child medically, but you also must understand what your child needs educationally. The school should know what is going on with your child -- they are the experts right? Wrong! You are the expert. Many teachers and administrators are not familiar with disabilities in general, let alone in the area of TSC.

 

Just because your child has TSC does not mean that your child will automatically receive help in school. The law is very specific a child’s disability and it must adversely affect learning or he/she will not qualify to receive help in school. To further complicate matters, under the Individuals with Disabilities Education Act of 2004, the child must meet a certain criteria to even qualify. So, just because your child has a disability does not mean the school has to provide any kind of support or help.

 

Child with a Disability

A child with a disability is one who has been evaluated by the school system in accordance with the law and qualifies as a “child with a disability,” under IDEA 2004. Children are identified with a disability under the following categories:

• Intellectual Disability

• Hearing Impairment

• Visual Impairment (including blindness)

• Serious Emotional Disturbance (referred to Emotional Disturbance)

• Orthopedic Impairment

• Autism

• Traumatic Brain Injury

• Other Health Impairment

• Specific Learning Disability

• Deaf-blindness

• Multiple Disabilities

• Speech or Language Impairments

 

To get special education services a child has to be identified in one of these categories. The following procedures must be followed in identifying a child with disability under IDEA 2004:

 

• Not discriminate based on race or culture

• Be given in the child’s native language or mode of communication unless it is clearly not feasible to do so

• Use a variety of tools and strategies

• Be validated for the purpose used

• Be given by person trained/knowledgeable

• Be used in accordance with the test instructions

• Measure more than just IQ

• Accurately measure aptitude and/or achievement

• Use numerous tests in the evaluation process

 

If a child has more than one disability he/she will qualify under the disability that most adversely affects learning, or he/she can be identified under multiple disabilities. If your child has intellectual Disabilities and autism, he/she could be identified under either depending on which is affecting learning the most. Is the developmental delay affecting his/her learning more than the autistic behaviors? If one does not outweigh the other, then you might want your child evaluated for multiple disabilities.

 

To learn more go to www.tsalliance.org and click on “school issues” then on the publication “Parent’s Rights.”

Good Advice
8/26/2010

Jennifer Flinn sits on the TS Alliance Educational Advisory Borad she is located in Canada.  But, I felt what she wrote would be helpful to parents in general.................!

 

Dear Parents, Guardians and Friends,

 

As the new school year quickly approaches, I thought I would write a short letter to everyone about TSC and your child in school. As an Elementary Educator, and a mom of a 4 year old with TSC, I know this can be a stressful and anxious time for parents and children.

It is important to work with your child’s school to try to get the best educational experience possible for your child. As you know, TSC affects every child differently. While some children may be average or even above average, others might be very developmentally affected. However, it is important to realize that TSC’s affects can sometimes be subtle, and it is important for educators to be aware of your child’s condition and the possible impacts it might have on learning. For example, many children with TSC may have more anxiety than children without TSC, or may have specific learning areas that are affected, making it more difficult or take them longer to learn certain skills or gain knowledge.

Here are some ways you can work with your child’s teacher to help ensure a productive and happy school year:

  • Don’t wait until the first day of school to contact your child’s teacher and educational team regarding their condition. As a teacher, I know how hectic and busy it is on that first day of school is. Approaching your child’s teacher on this day may not be the best way to ensure they get the best help and that your message is heard. It is better to contact the school during the last week of August. The staff is often back at work, but there are no classes running, so the teachers and resource team might have time to focus on your child’s needs. 
  • Do approach the school in the last week of August (or better yet in May before the next school year) to discuss your child’s condition and potentially how the school will accommodate them. This is particularly important if your child will be attending school for the first time, or if they are starting at a new school.
  • Do ask if you can meet their new teacher, any EAs that might be involved and the resource teacher, as well it may be a good idea to introduce your child to the principal. 
  • Do be upfront about your child’s condition. Some parents worry about “labelling” their child-especially if their child is developmentally typical. However, as a teacher I know it is always best to have more information then less-remember you and the educational team are in a partnership-give them as much information as possible to help them do the best job they can for your child. There is also an important safety consideration. Even if your child has never had a seizure, if they have TSC there is always the possibility that they could develop seizures in the future. By letting the school know that, and what to watch out for, you increase the chances that if a seizure were to occur it would be dealt with appropriately and quickly.
  • Do carefully read any information that comes home.
  • Do read over and take an active role in developing the IEP.  This is meant to be a working document to help accommodate your child. You have the right to contribute to its development, and you know your own child best! The goals on the IEP are what the school is working towards with your child-make sure you agree they are the best goals for your child!
  • Do check to make sure things that are on the IEP are being followed through! The IEP is a legally binding document. If it specifies a certain amount of support for your child-that means they are entitled to receive it! It is up to you to make sure that they do. Unfortunately, with tight budgets and many competing requirements on a teacher’s time, it can be a case of the squeaky wheel gets the grease.

 

There is also a wonderful resource on the TS Alliance website about school issues and TSC, as well as a new document about TSC and behaviour issues. Both of these excellent documents may be helpful to your child’s teacher, resource team or school in not only planning how best to meet the needs of your child, but also in helping them to understand this complex disease and its implications for school. You may wish to print this document out and bring it in to your child’s teacher:

http://www.tsalliance.org/documents/Teacher%20Guide%20to%20TSC.pdf

http://www.tsalliance.org/pages.aspx?content=567 

I hope everyone has a smooth transition to a new school year! It is an exciting time for you and your child. 

Jennifer

School is Starting and I Don't Have an IEP!!
8/9/2010

I have gotten quite a few calls from parents stating that they do not have a signed IEP in place and school is starting in a few weeks. What should they do???

 

The first thing is to request an IEP ASAP. Put this request in writing put a time frame for them to get back with you. Such as: Please get back with me within 3 school days. Send this request Certified mail and make sure you get a returned card that they received the letter. Usually they state that there are no teacher’s available until a few days before school starts. You will need to insist that the school set up a meeting within those few days. You CAN NOT keep you child home for school even if there is no current IEP in place. It is against the law to keep your child home from school and the school is required to contact the courts if you do. 

 

I need to point out that the school district does not need you signature on their proposed IEP to implement it. The only time the school needs your signature is on your child’s very first IEP when they were put into special education. 

 

If you and the school could not agree on services and/or placement for you child you will need to get into an IEP and try to work it out. If you can’t the only way you are going to stop them from implementing their proposed IEP is through your procedural safeguards under IDEA. To learn about your procedural safeguards down load the document “Parent’s Rights” off of our web site or contact me dhook@tsalliance.org.

Dear Michele
8/9/2010

The first question is when was his last evaluation? The school is required to do an evaluation every three years if anyone on the IEP feels there needs to be testing (you are a member of the IEP team). If the school has not done a complete evaluation I would request one just to see how much you son has progressed. If there has been no progressing or regression then the school is not doing their job. The law requires that a child in special education progresses in the general education curriculum at their functioning level. If you have the ability to have a nuro- physiological evaluation this would give you and the school more information on his abilities. This is explained in my publication “Teacher Guide to TSC,” starting on page 8.(this can be downloaded from the our web site).

 

If the school is working on living skills my question would be does he know how to read basic signs (Men, Women, Exit, Emergency, Fire). Does he have the skills to cook, wash clothes, and basically take care of his personal needs independently? If they are not working on these issues then they are not focusing on living skills either. I would also suggest that you request a transition plan for him. The law says that transition needs to happen at age 16 or earlier if it is needed. When TSC in involved then transition should start in middle school.   The school is required through the transition plan to get you son’s skills to a level where he can live as independently as possible. This plan is to guide the school on what is needed for him to live as independently as possible. You can read about transition is “Transition from School to Community,” and it also can be downloaded from our web site. Knowing what your vision is for your son should be the driving force of the IEP and the goals that are written on the IEP. Such as:

 

When he gets out of high school what is the vision:

 

·          Assisted Living

·          Independent Living

·          Assisted Employment

·          Competitive Employment

·          2 year Technical School

·          Community College

·          4 year College

 

Looking at his present level of performance what does he need to learn to achieve this vision?

 

It is definitely not too early to start answering these questions and pushing the school toward you vision for your son. Remember parents are their child’s best advocate.

Michele, NY
6/18/2010
My son is 11 1/2 yrs old  has been is special ed school since he was 3.  He cannot read, does not know math. He can recognize #'s and letters.  He knows how to write his name & family members names.  He loves music and memorizes lyrics to songs.  He is in 6th grade this year since he was sent to a new school because he is considered in "Jr. High School" he had alot of problems transitioning so instead of forcing him to do work they just let it go.  I feel a whole year was wasted.  I do not understand why a child cannot be "left back" when they are in Special Ed, in two years he will be out of this school and who knows where he will be.  The teacher tells me that he will be put in a school that focuses on life skills not reading & math. Is there anything I can do?  Should I try to get him into a private school & pay for a school and will a private school still push him along according to his age?  I have no idea what to do!!!!!
Summer is Here!!
6/11/2010

Summer is here and everyone is so glad to be out of school. But, let’s not forget that children lose about 6 weeks of education that the have to recoup at the beginning of next school year. This is the average for a child without a disability. So, as parents of children with disabilities we have to make a greater effort to keep our child up to speed. 

 

Read, read, read, and read some more. Be an example for your children and show them that you value education by reading. Those of you who have older children you can read the same books and have a daily discussion on the story. For younger children take them to the library and book store on days when it is raining. Don’t forget those bed time stores believe me they remember when they become adults.

 

Don’t miss an opportunity to teach your children. If you are cooking include them in reading the directions and measuring out the ingredients. When you are in a store have them estimate what the bill will be or which item is a better price. It is these little things that keep our children stimulated and learning. So, have a great summer but don’t forget education.

Help for College
5/5/2010

Fran,

Yes,colleges are required to provide accomodations to students with disabilities.  The law that mandates that colleges provide these services is the Rehabilitation Act of 1973 Section 504.  This law is a civil rights law which states that a student with a disabiltiy is to receive the same education as a student without a disability.  Every public college has a special education department to help student's with disabilities.  They do require documentation of the disabiltiy and current evaluations.  

There are scholorships available for student's with disabilities.  Here are a couple of web sites for you:

Federal government’s Disabilities Information website.

Grants for Disabled Individuals.

These might be helpful!

Dena 

School's Understanding TSC
5/5/2010

Brieanne, CA

It is hard when a school does not understand the manifestations of a disabiltity such as TSC.  We here at the TS Alliance are trying to help with this by developing publications for educators.  We now have "Educator's Guide to TSC,"  and "Behavior and TSC" to help with this issue.  You can downlaod them from our website.  Just click on School Issues and scroll down to publications.

I do not have an opinion about the Waldorf Method in education.  I am a firm believe that we keep trying until we find what works.  I would suggest however that you join our parent list serve and ask if there are any parents using this curriculum for thier children. 

To join the list serve you just go to the web page and at the top of the page click on " online support," then a menu will come down click on "discussion groups" and follow the directions.  This is a free service and is a good way to get information from otheres who have had the same issues to deal with.

Transition Issues
4/11/2010
I am a single mom of three girls, my oldest who is 18 has TS and was diagnosed just prior to her 2nd birthday. Since that time, school has been a long arduous and difficult road. I pulled her out of school in 3rd grade to homeschool her because she was not going to pass her FCAT. I got her through that and back in at the end of 4th grade. Despite numerous meetings with staff and teachers, and Sylvan Learning center, etc. she failed one grade in middle school and did BETA to catch up the next year which she was successful at. She failed her first attempt at 9th grade so we did Florida Virtual School to try to catch her up again. Needless to say, she's 18 and in between 10th and 11th grade - she'll be 19 next month. Her confidence has suffered so much as she has seen two years worth of school mates graduate without her. She was looking at another year like this when we were given the GED exit option. She decided she wanted to do the GED exit. She just took the GED and hopefully will be graduating as this program allows regular graduation IF she passed the FCAT test she took earlier this year. She really wants to go to college - she wants to teach children in elementary school. She has processing problems, short term memoriy issues and is almost void of organizational skills/abilities because of the TS. It has taken her so long to get through high school - I just wonder what services she can take advantage of in college. I am a single mom - not wealthy by any means, I struggle financially but do my best for all three of my girls. But unfortunately that means I cannot afford her college and definitely not one where it might take her two or three tries to get through a class. Is there any assistance, financial and learning that she can take advantage of through some type of program out there? How do we overcome short term memory - I have had to repeat things her whole life over and over because of that  and it just takes her so much longer to process new information - she has to do 10 times the number of math problems that others have to in order to 'get it' when it comes to new things - however, her IQ is in normal range - when she finally does get the information she does retain it. I know we are extremely lucky when it comes to this but I also know the school board has no idea how to deal with a child with 'processing issues' - they only look at IQ and say - she has no problem. I did fight with them for two or three years and finally got her accommodations - do these apply in college too? Thanks for your help and any info on financial and learning help in college! We're blessed that she has not suffered a more severe form of this! Also, how do I tell her about the lung and kidney issues that may develop - I have never nold her yet - I didn't want to scare her but she's an adult now - any suggestions would be helpful. Thanks, Fran
Brieanne, CA
4/9/2010

After reading through some of these stories, I find relief, but also extreme anger and frustration for these kids and parents. My 10 year old daughter was diagnosed at one month old. She looks the same as every other kid, except for the white spots and the angiofibromas. So school has been a complete nightmare. She was kicked out of a christian preschool at age 4, and I struggled for years trying to get cooperation with IEPs. It would be great if you could just walk in and say "hey..here's the problem. Do you have an IEP for that?" Unfortunately, I have dealt with years of teachers and school psychologists doubting that there is anything significantly wrong with Alex. Telling me how according to their standardized testing..blah blah blah. It's so infuriating. So I enrolled Alex in a private school for kids with Autism, ADHD and learning disabilities, and even that has been a struggle. She has threatened to kill herself and other kids, sliced her arms up with a piece of glass she found when she was angry, and screamed at the teachers in violent outbursts daily. Everyone always has advice..."well have you tried this school, or that school?" And I just want to scream. So many people have no idea what we parents are going through. I can't understand how there is still so little awareness of such a major disorder. I have opted to home school Alex. I am a single working mother of two, but it's kind of hard to work when you get called 3x a week to pick up your child early due to psychological meltdowns. I am planning on trying the Waldorf method curriculum. Have you heard any positive or negative feedback for home schooling a TS child?? I'm pretty much out of ideas. Any advice would be greatly appreciated!!! 

 

Hang in there, parents!!!! :) 

Transition
3/11/2010
 

April,

The first thing is to find out about support services. In PA go to the http://www.pamedicaid.pitt.edu/faqs.html#a4  It will tell you about you Medicaid Waiver program. If she is not on their waiting list contact Pennsylvania Developmental Disability Council (PADDC) and get her a case worker to help you with the process. They should be involved with her transition planning. 

These Waivers will provide her with resources and support throughout her life. Also, planning for the future of an individual with special needs requires in-depth knowledge of the federal laws as they pertain to government benefit eligibility and legal documents such as special needs trusts and guardianships. There are important financial considerations as well for providing not just lifetime care, but quality of life.

 The transition plan you described sounds like you are working on appropriate goals but, are you addressing assisted living and/or assisted employment goals. What type of services can she receive to help her in these two areas? Is assisted employment something that the team feels is possible? Just an IQ does not tell the entire story. What can she do; and what is she interested in?  Is part of the transition plan getting her into the community? 

Since she is just 17 you have a few year years to address many of these questions. I would also suggest that you down load our publication “Transition for School to Community” as a resource. I don’t know if I helped or just gave you food for thought???

Dena

Transition ideas
3/10/2010
My name is April and I work in a private school in western PA.  I have a student that I am currently working with who has been diagnosed with TS.  She has been given an IQ of approx 46 and it has been determined through VP Map that she falls into the 0-18 months range in verbal behavior.  Our student is 17 years old and I've really been struggling with transition ideas.  We continue to work on daily living skills, communication, community skills.  Any help/ideas would be greatly appreciated.
How to get Special Education Services
2/15/2010
 

Special education is a set of services and supports provided to children with disabilities to help them progress in the general education curriculum. The Individuals with Disabilities Education Act 2004 (IDEA 2004) is an education law designed to ensure that children with disabilities are not only exposed to the general education curriculum but progress in it also though a free appropriate public education (FAPE).

When your child is diagnosed with tuberous sclerosis complex (TSC) the medical issues can be overwhelming and dealing with the school is the last thing you want to do. It’s bad enough that you practically have to earn a medical degree to understand everything going on with your child medically, but you also must understand what your child needs educationally. The school should know what is going on with your child -- they are the experts right? Wrong! You are the expert. Many teachers and administrators are not familiar with disabilities in general, let alone in the area of TSC.

Just because your child has TSC does not mean that your child will automatically receive help in school. The law is very specific a child’s disability and it must adversely affect learning or he/she will not qualify to receive help in school. To further complicate matters, under the Individuals with Disabilities Education Act of 2004, the child must meet a certain criteria to even qualify. So, just because your child has a disability does not mean the school has to provide any kind of support or help.

 

This booklet is designed to do is educate you about your rights when your child is diagnosed with TSC. It will teach you how to get services and support in the school system for your child.

Child with a Disability

A child with a disability is one who has been evaluated by the school system in accordance with the law and qualifies as a “child with a disability,” under IDEA 2004. Children are identified with a disability under the following categories:

• Mental Retardation (Intellectual Disability)

• Hearing Impairment

• Visual Impairment (including blindness)

• Serious Emotional Disturbance (referred to Emotional Disturbance)

• Orthopedic Impairment

• Autism

• Traumatic Brain Injury

• Other Health Impairment

• Specific Learning Disability

• Deaf-blindness

• Multiple Disabilities

• Speech or Language Impairments

 

To get special education services a child has to be identified in one of these categories. The following procedures must be followed in identifying a child with disability under IDEA 2004:

• Not discriminate based on race or culture

• Be given in the child’s native language or mode of communication unless it is clearly not feasible to do so

• Use a variety of tools and strategies 

• Be validated for the purpose used

• Be given by person trained/knowledgeable

• Be used in accordance with the test instructions

• Measure more than just IQ

• Accurately measure aptitude and/or achievement

• Use numerous tests in the evaluation process

 

If a child has more than one disability he/she will qualify under the disability that most adversely affects learning, or he/she can be identified under multiple disabilities. If your child has intellectual Disabilities and autism, he/she could be identified under either depending on which is affecting learning the most. Is the developmental delay affecting his/her learning more than the autistic behaviors? If one does not outweigh the other, then you might want your child evaluated for multiple disabilities.

The school typically doesn’t know how a TSC diagnosis will impact learning, because TSC affects everyone differently. The school does not have to recognize the disability if they feel it is not affecting your child’s learning. If your child is passing with Cs and Ds, the school will probably not want to test. You will then have to push to get them to understand for example it might take your child two or three hours a night just to do homework. Most school systems will only evaluate a child if he/she is failing.

Because the school is not an expert in TSC, they don’t always understand that your child is struggling and not just being lazy or not putting forth the greatest effort. More over, many times there are no outward signs of TSC. Since many regular educators don’t understand disabilities, they feel if they don’t see any visible signs of a disability, none must exist.

 

If you are in this position, the first step is to write a letter requesting your child be evaluated for a disability under IDEA 2004. Put as much information in the request letter as possible describing the areas your child is struggling. (There is a sample of a letter in our Parent’s Rights document on our web site on page 37.) Once you have requested the evaluation, the school will do one of three things:

 

1. Send you a “permission to evaluate form”

2. Refuse to evaluate until they do interventions

3. Refuse to evaluate  

The school does not recognize your letter as a request to evaluate your child, even if that is what you stated in your letter.

They will only recognize their “permission to evaluate form. “ Once you have signed that form, the school is required to evaluate your child within 60 calendar days (this is not school days) from the day you gave your consent to evaluate. School systems choose to only recognize their state-approved parent request form. So, when writing your letter makes sure you give them a specific date to respond. To get the 60-day time frame going, you must sign their form stating that you suspect you child of having a disability under IDEA 2004.

The school can also state that they want to do a Response to Intervention Model (RTI) first. The school has authority to choose the RTI process to determine whether a child has a specific learning disability. They first determine if the child responds to scientific, research-based intervention. The problem with this type of intervention is that the 60-day time frame does not start until after the RIT process is completed. Sometimes it will be a full school year before the school will move forward with testing. That means your child may experience a year of failure and/or struggle before you can get them help.

 The idea of the RTI Model is not a bad practice if the school system is trained in the RTI process and the interventions they are using are in fact evidence-based research. These are the questions to ask:

1. How long are you planning on doing the RTI?

2. Am I involved in this process?

3. How are you going to collect data on the outcome of the RTI?

4. What is the evidence-based research to back the RTI you are using?

 

If the school system refuses to evaluate your child, you have no choice but to exercise your rights as a parent of a child with a disability. You want to proceed with the most un-adversarial approach, such as asking for a meeting with the person who runs the special education programs in you school district, who is sometimes called the “Special Education Director.” If you don’t know who this person is, go to your school district’s web site and look for who is in charge of Special Education. If you do not have access to a computer contact the TS Alliance at 1-800-225-6872 ask for the Advocacy Department, and we will assist you in finding the contact for Special Education.

If this does not work, you will need to ask for a meeting with superintendent. You would request a meeting with the superintendent and write a letter to the president of the school board. (There is a sample of this letter in the Parents Rights Document on our web site on page 37.)

If the superintendent does not agree to have your child tested, you will proceed with a complaint to the State Department of Education. Most State Departments of Education have complaint

 

forms on their web site. If you do not have access to a computer contact the TS Alliance at 1-800-225-6872, ask for the Advocacy Department, and we will assist you in getting your State’s Complaint Form and help you fill it out.

 

What if I disagree with a School's Evaluation?
2/1/2010

Parent's are not always going to agree with evaulations done by the school system.  Let's face it they are not experts in TSC.

 

What parents need to understand is that the school psychologist must know how your child is currently affected with TSC and what changes may occur in the future due to the progression of TSC in the brain. The psychologist will not provide an evaluation that is as thorough and extensive as your child’s neurologist. Sometimes the school psychologist and your doctor’s recommendations do not agree.

 

Unfortunately, the school system and medical system do not always agree with what a child needs. When the school system’s evaluation comes back, and you disagree with the results, there are steps you can take as a parent to get the school to take into consideration your doctor’s evaluation. So, when their is a disageement a parent can request an independent educational evalution.

 

Under IDEA 2004, parents are entitled to an Independent Educational Evaluation (IEE) at the school district’s expense. The law recognizes that when a school psychologist works for a school system, he/she are not always a free agent or as unbiased as needed to support the specific educational needs of your child. Basically, this means the school pays the psychologist, which may sway the outcome of the evaluation. Legally it is not supposed to but sometimes it does. IDEA 2004 took this into consideration and as a safeguard parents have the option of an IEE.

 

If you believe the evaluation is not appropriate for your child, you can request an IEE. I strongly suggest you request that verbally at the evaluation meeting and later in writing.

 

Your signature is very important the school can not do anything without your written consent. So, make sure that you agree with everything before you sign anything. This will save misunderstandings later on down the road.

 

If the school wants you to sign an attendance sheet do one of two things:

1. Make sure that at the top of the sheet it states that it is just an attendance sheet. If the paper does not state that it is just an attendance sheet ask them to write it at the top of the page. Then request a copy of it before you leave.

2. State that you will sign the attendance sheet at the end of the meeting. If you agree with the outcome of the meeting sign the attendance sheet and ask for a copy. If the meeting does not go the way you wanted refuse to sign the sheet. State they will be receiving written confirmation of you attendance through the mail.

 

This is tricky because you do not want to seem adversarial. So just state, “If you don’t mind, I would like to sign the attendance sheet at the end of the meeting.” Usually the school will be surprised but there is no reason for them not to agree. You did not refuse to sign it.

 

Once the school district understands that you disagree with the evaluation it may do one of two things:

1. Provide you with a list of independent evaluators who are not employees of the school district. You can also ask if the school would be willing to pay for an evaluation done by your doctor. They can refuse and require you to pick from the list.

2. Refuse to pay for an IEE and initiate a hearing.

 

If the school district refuses to pay for the IEE it is required to initiate a hearing to show that the evaluation they administered is appropriate. In the case of TSC, it will be extremely difficult for them to prove their evaluation is appropriate because of the complexity of this disability.

Parents always have the option of paying for an IEE themselves. There are many reasons why it is good for you to pay for an IEE yourself, such as:

 

• Your doctor is an expert in your child’s disability.

• You have documented evidence that your child needs special education services.

• The school system must consider the data in your evaluation in deciding if your child needs special education services.

 

If you choose to pay for an IEE make sure your doctor knows that the evaluation must meet the school district’s criteria.

The school cannot disregard the findings of the IEE and they must consider the data in deciding if your child needs services.

 

If you believe the evaluation is not appropriate for your child, you can request an IEE. I strongly suggest you request that verbally at the evaluation meeting and later in writing.

 

Your signature is very important the school can not do anything without your written consent. So, make sure that you agree with everything before you sign anything. This will save misunderstandings later on down the road.

If the school wants you to sign an attendance sheet do one of two things:

1. Make sure that at the top of the sheet it states that it is just an attendance sheet. If the paper does not state that it is just an attendance sheet ask them to write it at the top of the page. Then request a copy of it before you leave.

2. State that you will sign the attendance sheet at the end of the meeting. If you agree with the outcome of the meeting sign the attendance sheet and ask for a copy. If the meeting does not go the way you wanted refuse to sign the sheet. State they will be receiving written confirmation of you attendance through the mail.

 

This is tricky because you do not want to seem adversarial. So just state, “If you don’t mind, I would like to sign the attendance sheet at the end of the meeting.” Usually the school will be surprised but there is no reason for them not to agree. You did not refuse to sign it.

 

Once the school district understands that you disagree with the evaluation it may do one of two things:

1. Provide you with a list of independent evaluators who are not employees of the school district. You can also ask if the school would be willing to pay for an evaluation done by your doctor. They can refuse and require you to pick from the list.

2. Refuse to pay for an IEE and initiate a hearing.

 

If the school district refuses to pay for the IEE it is required to initiate a hearing to show that the evaluation they administered is appropriate. In the case of TSC, it will be extremely difficult for them to prove their evaluation is appropriate because of the complexity of this disability.

Parents always have the option of paying for an IEE themselves. There are many reasons why it is good for you to pay for an IEE yourself, such as:

• Your doctor is an expert in your child’s disability.

• You have documented evidence that your child needs special education services.

• The school system must consider the data in your evaluation in deciding if your child needs special education services.

 

If you choose to pay for an IEE make sure your doctor knows that the evaluation must meet the school district’s criteria.

The school cannot disregard the findings of the IEE and they must consider the data in deciding if your child needs services.

 

Members of a legal IEP meeting!
12/23/2009
 

I would like to start the beginning of this New Year with some basic information on IEP meetings. One of the most important aspects of the IEP process is to have all the team members present. 

Members of an IEP Team should be made up of the following:

• Parents

• Regular education teacher of the child; if the child is or may be in the regular education environment

• Special education teacher of the child

• Where appropriate, not less than one special education provider of the child

• District representative

• A person to interpret evaluation results

• Child, when appropriate

• Any others with special knowledge or expertise in the area of the child’s disability  

Prior to IDEA 2004, all of these participants were required to attend the IEP meeting for the IEP to be written. Now, a member of the IEP team can be excused from attending an IEP meeting if the IEP team member’s area is not being modified or discussed, and if the parent and school agree in writing that the member’s attendance is not necessary.

If the school system wants to excuse an IEP Team member when their area is being modified and discussed then the law states that a parent has to be fully informed in his or her native language, or other mode of communication, and understand the granting of consent is voluntary and may be revoked at anytime. The school will be required to provide the parent with appropriate and sufficient information to ensure that the parent fully understands he/she is consenting to excuse an IEP Team member  in which their area is be modified and discussed. The parent also has a right to revoke consent at any time.

IEP meetings are to be held at a convenient place and time from parents. If the parents cannot attend an IEP meeting the IEP can be held over the phone to make sure there is parent participation.

 

An IEP can be changed without an IEP meeting if the school district and parent agree that an IEP meeting does not need to be held. The changes to the IEP will be written in document form. The parent has to request a copy of the changes if they want a copy. The school is not required to provide a copy of the changes to the parent.

If your child requires accommodations, modifications, its services in an area where an IEP Team member cannot attend, I strongly suggest that the meeting be rescheduled until the IEP member can be present. Anther option would be to proceed with the IEP meeting, but if there is evidence that the IEP is not going well, to revoke your consent and reschedule the IEP meeting. The school system cannot excuse a team member without your written approval.   Let’s look at the IEP team member who is the school representative. This person should be a person knowledgeable in the area of curriculum and in resources the school has available. He/she must also have the authority to commit those resources.

 

This means that if you are in an IEP meeting and the team has decided that your child needs Occupational therapy (OT) for 20 minutes twice a week, the district representative has the ability to state that the school will provide those services. If you are in a meeting and the district representative states that he/she does not have the authority then all of your required team members are not present, because this person would not be considered a legal local education representative.

Administering Diastat at School
9/30/2009
 

I am been receiving numerous calls and e-mails about public schools systems refusing to administer Diastat. Their crisis intervention plan is to call 911. In many cases delaying the administering of Diastat can result in neurological damage or other serious health consequences. So, relying on 911 is doing a major disservice to the child and setting the school up for litigation. There are three laws (ADA, Rehabilitation Act of 1973 Section 504, and IDEA 2004) that support the administering of medication for children with disabilities. 

The law states:

Under 504 and ADA a school that receives any type of federal funding cannot:

Deny students with disabilities the opportunity to participate in or benefit from any aid, benefit or service afforded to their peers without disabilities, even if a modification or accommodation must be provided to allow participation. Section 504 requires public schools receiving federal funds to provide a free and appropriate education to all qualified students with disabilities in their jurisdiction.

 

This means that the school must provide whatever it takes to ensure that a student with TSC can participate fully in their education. So, in order for a child with seizures to be safe and participate in the regular education curriculum there must be someone to administer the Diastat when needed. Using 911 is not a safe and efficient way to handle administration of Diastat. Administering Diastat under Section 504 would be considered a “reasonable accommodation.”

IDEA

Special education” includes instruction that is specifically designed to meet the child’s

unique needs that result from a disability. It can involve adapting the content, methodology or delivery of the instruction. “Related services” include “transportation and such developmental, corrective and other supportive services (including . . . medical services, except that such medical services shall be for diagnostic and evaluation purposes only) as may be required to assist a child with a disability benefit from special education.”  IDEA regulations also include “school health services” as a related service and define “school health services” as services provided by a qualified school nurse or other qualified person.

 

Under IDEA the administering of Diastate would be consider “related service.”  I want to stress here that it is VERY important to make sure that this is addressed as part of your child’s IEP under related services. If the school system fights you on placing it on the IEP you might want to quote the following court cases:

Silsbee Independent School Dist., 25 IDELR 1023 (Tex. SEA 1997).

 

The hearing officer held that calling 911 was not an appropriate response where

treatment for a seizure disorder was needed, because there was no guarantee an

ambulance would arrive within any particular time frame, despite the fact that a hospital

was nearby. The student in this case was a seven-year old first grader who experienced

convulsive seizures, along with drop apnea. The school had a seizure protocol, which

involved having school personnel turning the student, Steve, on his side, timing the

seizure, contacting the school nurse and administering Diastat if his seizure and apnea

lasted for three minutes or more.

Student v. San Francisco Unified School District, No. 2331 (CA Special Education

Hearing Office 2002)

The hearing officer ruled that the implementation of the protocol of the student’s

neurologist for the administration of Diastat by qualified District personnel is necessary

to make public education meaningfully accessible to the student. It was also found that

the protocol is necessary to meet the student’s unique needs and afford him an

educational benefit. The protocol, therefore, is a related service the District must

provide.

Make sure to get a letter from your Neurologist stating the importance of Diastat and that it is imperative that it be administered on sight and not after a 911 call. Have them state very specifically what harm will be done if it is not administered in time. Many schools do not have nurses in every building. This is an issue that can be easily addressed by the doctor stating that personnel can be trained in the administering of Diastat and they do not have to be a medical health professional.

I hope this information is helpful.

Dena

 

Age 21
9/30/2009

Mau:

You are right!  The IEP Team would decide and the student would finish up the year at age 22.  There are even some states that have put in their state regulations that a student can go beyond 21.  It just depends on you state but, federal regulations state 21.  States can go above and beyond federal law but can't go below it:!

 

Dena

 

Behaviors in School
9/15/2009
 

School has started and the honeymoon period is over. Many children with TSC struggle with changes and behaviors might appear. A new teacher, new aide, new classroom, or a more inclusive setting might be the culprits for these behaviors. 

Many schools strive to provide a more inclusive setting for children with disabilities because they confuse “least restrictive environment (LRE)” in IDEA with inclusion. The law does not mandate inclusion it mandates what is appropriate for a child with a disability. 

Inclusion is not always what is right for all children they might struggle in an inclusionary setting. An inclusionary setting could be in a regular classroom with services and supports, and/or a mainstream inclusion program where the child receives a pullout resource room for a short period of time throughout the day. Some children with TSC need small group and one on one to meet their educational needs.

When a child’s educational needs are not being met they become frustrated and behaviors occur. If your child is having behaviors remember to ask the typical questions:

  • Has medication changed?
  • Is there a possibility of seizures?
  • Has something at home changed?
  • Is there a different teacher?
  • Is there different classmates?

But make sure not to overlook their educational program and make sure that it fits your child’s educational needs.

Jordan's Fears
8/11/2009
 

Jordan’s Mom:

Anxiety disorder is one of the manifestations of TSC in some individuals. I am assuming that Jordan is on an IEP. (But, if she is not you need to get her evaluated and either set up on an IEP or a Section 504 plan.) 

What has the school done so far to address her educational needs? Missing 180 days in the last two years is not acceptable under any standards. Did the school set up home instruction? You really need to call an IEP meeting so that she can receive services at home until you get a diagnosis. The psychiatrist you are taking her to can evaluate her and give recommendations to the IEP Team. The IEP can be set up so that she can do a gradual transition back into school. 

The other issue is you are legally responsible for getting her to attend school. The school can file truancy charges and/or educational neglect charges if this is not addressed on the IEP. 

Dena

Jordan's Fears
8/11/2009
My daughter Jordan has missed 180 days of school in the last two years.  Not sure why the middle school did not keep her back but I went to bring her to a two week orientation at Pembroke Academy prior to starting her freshman year and she was crying and screaming that she cant do it and that she can't be around that many people.  She stated that she can't breath.  Looking at her being that scared I could see that she was having a panic attack.  I do not know what to do.  I made an appointment next week with counselers and am trying to get her in with a good psychiatrist.  In my honest opinion she is too far behind to start high school and I feel she needs alot of counseling to overcome the fear.  Forcing her to go to school the last two years did nothing for her.  Her problem is medical I feel and not behavioral.  Has anyone experienced this with there teenage children?  
Are you ready for school?
8/3/2009
 

Ok, so you have the new cloths, shoes, and school supplies ready for school. But, have you taken the IEP out and looked at what services your child should be receiving when school starts?   When those services will start? Where those services will be delivered? Who will be delivering those services? 

Many times therapies don’t start until at least two weeks after that first day of school. Is this what you agreed to in the IEP?   Look at the IEP and see if your child is going to be in a regular education classroom, resource room, or both. How are your child’s services being delivered? Is the regular education teacher providing the services, special education teacher, or therapist?   

If you feel the IEP is not clear and you have questions contact the school. Most administrators start school the first of August and are available to meet with you. It is best to get these questions answered up front before your child starts school. If there is a disagreement you have time to get things resolved before that first school bell rings.

Starting school on a positive note is the first step to a successful school year for your child.  Being an involved parent means being an informed parent, so don’t be afraid to ask questions.

Supeme Court rules in favor of parents
7/6/2009
 

Last month, the Supreme Court found that parents of children with disabilities may seek reimbursement for private school tuition even if the child has never received special education or related services from the school district. In this particular case (Forest Grove School District v. T.A. No. 08-305) the school system had done an evaluation that was requested by the parents during their son’s freshman year in high school. The school’s evaluation found him not eligible for special education services. The parents then went out and had their own evaluation done. There private evaluation found that their son had ADHD and other disabilities related to memory and learning. The parents took the advice of their private experts and placed their son in a private school for children with special needs. They then informed the public school and requested reimbursement for tuition. The school district requested to do a reevaluate of the student. The parents gave their permission and the school did another evaluation, again finding the student was not eligible for special education services.

The Supreme Court ruled that the schools evaluation was legally insufficient because their evaluation did not address all areas of the suspected disability. Under the Individuals with Disabilities Improvement Act parent’s can seek reimbursement if the school district did not offer a free appropriate public education (FAPE) to their child. There are three stipulations to this:

  1. Parents must reject the Individualized Education Plan (IEP) at the most recent IEP meeting;
  2. Parents must give written notice 10 business days prior to removing the child from the public school to the private school;
  3. Parents must make their child available for an evaluation from the public school.

The school’s defense was based on a clause added to IDEA in 1997 stating that a court may order reimbursement to parents where children had previously received special education services. The school district stated that because they never provided special education services then they were not responsible for reimbursement. But, the court disagreed saying this would mean that the students who couldn’t get any services would have less rights than those to whom the school provided some services. This is a major reinforcement of FAPE in IDEA.

Jana/Haedan Texas
6/11/2009
 I am very blessed to be raising a child with TSC.  I have a beautiful 3 year old that has taiught me so much since his birth.  It saddens me to read these stories of such horrible experiences with schools.  Espeacially an adult posing as an educator make light or fun of any child with any dissability.  My child was a part of ECI until he was 3 and then went to Aledo ISD for their PPCD program.  Knowing that this was an unknown disease I gathered all the information I could get my hands on.  I had all of his doctors & therapist write notes and ideas about teaching and working with Haedan.  He has seizure disorder, sensory disorder, failure to thrive, has multiple flags for Autism spectrum and the OT tells me he displays many mental retardation flags.  His speach is 15- 20 months delayed, but he improves remarkably everyday.  The school district and all his teachers are very helpful and very one on one with him, I truley believe arming myself and helping educate Haedans teachers about this disorder helped alot.  They now understand and are prepared for whatever may come.  As sad as it is some of those educators may be intimadated by this disease because they are not knowlegable.  Common sense says we had to learn new ways to parent these children for them to flourish, so must we help educate their teachers.
Home Schooling
6/3/2009

AG:

What a horrible story!  I am so sorry that this was your experience with public school.  I am at a loss for words and for me that is rare!!

Hopefully, we can get educators and communities more informed about TSC.  I am presently writing a booklet for teachers on TSC.  We are also launching a new list serve for professionals.  It is our hope that they will share their experiences educating children with TSC with others.  Dr. Vicky Whittemore and I will be monitoring the list serve for any questions or misunderstandings.  All we can do at this point is educating as many educators and health care professionals as possible.

I am glad that you daughter is doing well.  Home schooling is always an option but, not for the reasons that you had do home schooling.  Hopefully, professionals will read you story and it will help another child before damage is done.

 

Dena

 

 

 

AG-NORTH CAROLINA
5/22/2009

I am the parent of a 13 year child who has Tuberous Sclerosis. She was diagnosed when she was an infant. She has been placed in special education classes since she first began school at the age of 4. We live in a small community, which no one here knows anything about children who have TSC. It has been very painful and difficult for us. My child endured taunts from faculty, peers, as well as other parents.

As my child got older, her behavior has gotten a little different. The pediatrician says it is normal teenage attitude and rebellion, along with TSC. Last year, after a long fight with the school system, I hired a special education attorney. This was extremely time consuming and expensive, but my husband and I felt that it would be worth it. After a 3 day IEP meeting at 8 hours per day, and no monetary means to continue on, I decided to homeschool her. I was taunted and laughed at by other parents and the then PTO president even went as far as to write letters to our local newspaper, to suggest I put my child into an institution. Other parents follwed lead.

I am a fighter and my child's only voice. I fought and held my head high, spoke at board of ed meetings and maintained my dignity. My daughter hated school and would beg me not to send her, after the physical altercation, where the teacher decided to intimidate my child. I was reported to DSS by the teacher, for supposed abuse, where I now am very active. It was found that the report was made out of retaliation. The teacher and principal were getting people to sign petitions to throw my child out of the county. After all of the embarassment and taunts, I decided to home school my child, which was the best thing I could have ever done. My child is growing  mentally and emotionally. She is so happy and has learned so much. I was fortunate to have a supportive husband and family and friends. Everyone has a different approach, but mine was to see that my daughter become what I know she can be.

To Sign or Not to Sign
5/6/2009

We are now in the middle of IEP season. Parents struggle with the dilemma of signing or not signing the IEP. If I don't agree with everything on the IEP should I sign it?

I think a good way of looking at an IEP is like a contract. You are contracting with the school system to provide your child with a free appropriate education. If you have a contract with someone to build your house would you sign a contract that only includes half of the house? Do you just assume that the contractor will finish the job? No, you make sure everything is in the contract that you want completed.

There is nothing wrong with telling the school that you want time to think the IEP over or talk to your spouse, friend, or relative about it. If you do sign the IEP and you don't agree with everything the school will be required to implement the IEP as written.


The bad part is if you have to file due process, on the IEP that you didn't agree with, the school must implement that IEP until the due process is over. It does not matter that you only agree with part of the IEP it will be the stay put until the due process is settled.

Implementing the last agreed upon IEP during a due process is called “stay put.”


So, if you do not sign the IEP and go due process then stay put will be your child’s last IEP you signed.

Help is appreciated
4/28/2009

I wanted to thank all the parents who responded to my request for information on working with students with TSC.  I admire you all for being such amazing advocates for your son/daughter.  I hope that by sharing my research with my peers and classmates, we as educators can become better advocates as well, and better educators for the children.

I think many times teachers do get caught up in everything that is going on in their classrooms, but you are right - parents know the child best, so I think it is important that everyone involved, the parent, the teacher, the aide, therapist, etc. all work as a team. 

Just to give you some insight into my project - I am writing a research paper, but then also sharing a powerpoint presentation and brochure for my classmates. Each student in the class will receive a brochure - the idea being we may not all have time to read each other's research paper, but we do have time to skim over a brochure and file it in a safe place so when we start working with a student who has TSC (in this case, however each student is researching something different) we can pull out that brochure and have some background information, and resources to go to for additional information.  (Just wanted you all to know what I am doing with the information I have requested)

So again, thank you so much for sharing your thoughts and concerns. 

 


Donna Georgia
4/23/2009

I would love for my son's teachers to understand that while I know that Chris is  a challenge, it is not for lack of discipline at home or that we are not supportive of their (the teachers efforts) but his complex medical condition makes forward progress both of academics and behavior more of a roller coaster than a straight trip. That we parents are not trying to be difficult but we want the education system to see our children they way we see them. I don't expect Chris to solve complicated math or read War and Peace but I desire that he grow as much as possible. I also want him to be treated with the respect and dignity that should be afforded to all.

 

 

Donna Turner Mom to Danielle, Jan and Chris w/TSC

Suggestions for Teachers
4/23/2009

As a parent, my most important thing I would like teachers to know is that all kiddo's with TS process information at different levels.  Many times teachers will say my son looks just fine, he is doing well, but only he knows how his brain takes and processes information.  Please do not automatically assume that because he looks fine, that he is able to mainstream without any problems.

At the begining of each school year I provide my son's teachers with as much TS information as they are willing to take, and let them know that the packet will help them understand my son and how he operates.  Many times the teachers tend to take it as a joke, and tell me that they have processing issues themselves.  And as the school year progresses and he starts to struggle with things...I have to remind them about the packet and to please take the time to read, understand and educate themselves.

I understand that educators are busy and do not have time to hold hands with every child, but taking a moment to understand a TS kid will avoid more time spent when the issues have become problems.

Thank you very much for your question.

Stephanie Zaugg - Mom to Andrew with TS - 15 years old

Re:What Teachers need to know (From Steve in MI)
4/22/2009

I think the main thing to keep in mind is the individuality of each TS case--no two are exactly  alike.  Therefore, what works for one kiddo may not work at all for another--be open to alternate methods of teaching a child.  In our case, our son's skills are very scattered--he does some things at an age appropriate level, and others he is very delayed in.  I'm doing my best to be brief here, but learning about the unique challenges each child faces with missing/diminished/delayed skills would probably do a lot to help identify largest areas of need.

Also--and this cannot be stressed enough--LISTEN TO THE CHILD"S PARENTS!!  We are the real experts when it comes to our children, and want to do our best to help you help them.  Oftentimes, district officials look at us parents as "the enemy", or "ignorant" about education.  This is not the case--we probably do more to prepare for IEP's than district officials do.  If we are pushing for things that may seem out of the norm, there is most likely a very good reason for us to so.  Hear us out before judging us, and be willing to make compromises.

 

I commend you for working towards being a SpEd teacher and wish you the best of luck.

 

Steve 

 

Dad to Nicklas, 6, w/TS
Jane in California
4/22/2009
Dena is right when she says each case of TS is different.  One general comment I could make, however, is that teachers should never assume behavior problems are only behavior problems.  Both good and bad behaviors can have multiple causes.  In students with TS, behavior problems can be symptoms of a physical problem, such as a growing tumor.  They can be side effects of medication. They can stem from frustration when the work is too difficult or support is inadequate.  They can come from misunderstanding social situations.  Or they can just be the student's way of having fun.  Teachers faced with behavior problems should try to understand the source of the problems.  Proposed solutions based on a misunderstanding of the source will inevitably fail.
What teachers need to know
4/22/2009

   That is a hard question to answer because of the differences in TSC.  One child might have mild manifestations and another child could have severe manifestations.  A child with TSC can have a mild learning disability where another child can have severe autism.The key would be to utilize all of the information that parents bring to the IEP meeting when determining services. 

Many parents have neuropsychological testing done privately.  This is a wonderful resource for you and the IEP team because it gives in- depth information on the child's cognitive, motor, behavioral, language, and executive functioning.  A Neuropsychologist will give recommendations on support services and teaching strategies to guide the IEP team in developing an appropriate IEP. 

Many times parents feel intimidated in the IEP process and don't feel heard.  Helping parents to feel comfortable and their input valued in the IEP process will help build a working relationship.  Schools and families must work together for children with TSC to reach their fullest potential.

I want to thank you for your question and hopefully you will get more input than just mine.  I also want to let you know the TS Alliance is starting a professional list serve.  This list serve will be for educators, social workers, and health care professionals.  This list serve will support individuals working with children and adults with TSC.  We hope to have the professional list serve will be up and running by the first part of May. 

Watch our web site for more information.

Dena

 

 

 

 

 

Advice, suggestions for teachers
4/13/2009
I am a middle school teacher and am currently going back to school to get my special education license.  I have been doing research on TSC and would like input from parents - what would you like educators to know about your son or daughter that would help the child, either on a daily basis or long term?  Thank you in advance!
Getting Ready for Your IEP Meeting 10 Things to Remember
4/10/2009

Hello Everyone:

Well it's IEP Season again.  I just wanted to post some suggestions in preparing for your child's IEP. 

1. Look over you child's IEP.  Then consider if you are happy with the services and progress your child has made over this last school year. 

2. Sit down and make a list of services and supports you want to keep or ones you want your child to receive.for the next school year.

3.  Make your list so that the most important things on the list are at the bottom.  These are the things that would be "IEP breakers."  Keeping the "IEP breakers" at the bottom of the list will give you time to establish a working relationship before the hard issues.  This list will also help keep you on track during the meeting, and will ensure you don't forget anything.

4.  Always go into an IEP with a positive attitude. 

5.  Take someone with you (friend, neighbor, or family) to help you stay focused.  Give them a copy of the list and they will make sure you don't get side-tracked.  It is always good to have two people listening.

6.  Make sure there is a person who meets the criteria for "Representative of the Local Education Agency."  The criteria is:                                                  

*Qualified to supervise or provide Sp. Ed. instruction   

 *Is knowledgeable about the general education curriculum  

 *Is knowledgeable about available resources and can say yes or no in providing the service.    

You don't want to get to the end of the IEP meeting and the Representative say he/she does not have the athority to commit those resources.

7.  Let the school/teacher know when you feel they are doing a good job.

8.  Never sign an IEP you do not agree with everything on it.  State you want to take it home and think about it.  Talk to someone who can be objective and can help you either to agree with it or call another IEP meeting to discuss your concerns.

9.  Never leave an IEP meeting without the original IEP.  Many schools will bring a draft and write on it and then want to make a "clean" copy.  State that you want a copy of the original to take home and they can send the "clean" copy to you later. 

10.  If there is a disagreement during the IEP call an end to the IEP before tempers get out of control.  State you are going to think over your options and get back with them.  Contact an advocate or the TS Alliance office for support to discuss your options.

If you have any IEP Meeting suggestions please share them.

 

Dena

 

 

 

Parent and Therapist in NY
3/31/2009

You make a good point! I am sure that every child would benefit from speech services.  But, Special Education Services are only provided for a child identified with a disability under the Individuals with Disabilities Education Improvement Act 2004 (IDEA).  There must be evidence to support receiving services such as speech.

Section 300.347(a)(3) of IDEA states that a child must receive the supports and services for the student to:

- Be involved and progress in the general education curriculum 

- Advance appropriately toward attaining their annual goals (both in academics and functional skills)                                                     

- Participate in extracurricular and other nonacademic activities  

- Be educated in least restrictive environment (regular education classroom with nondisabled peer as much a possible)

This is why it is important to support the need for services through evaluations both school-based and private.  Being a parent of a child with TSC, you understnd the importance of educating the school system in TSC and your child's manifestations.  One of the ways to do this is by using a Neuropsychological Evaluation.  School systems have to "take into consideration," any private evaluation that the parent brings to the IEP.

If there has been a Neuropsychological Evaluation done this is a wonderful resource for the IEP Team.  A Neuropsychological Evaluation can provide information leading to the diagnosis of a cognitive deficit or to the confirmation of a diagnosis, as well as to the localization of organic abnormalities in the central nervous system.  Most importantly it can guide effective treatment methods for the rehabilitation and education of a child with TSC.  This basically means, it can help the IEP Team decide the right type of services and supports are needed for a student to reach their fullest potential.

Unfortunately, because of budget issues and/or shortages of therapists in school systems it is the squeaky wheel that gets oiled.  More often than not, if parents do not come prepared with documentation and data supporting therapies their child will only receive minimum services

 

 

services in school
3/28/2009

HI... i am a parent of a child with TSC. I am also a speech therapist in a middle school in NY.

I am certified in Reading, Elementary ed ...

I have been working in the school setting for over 20 years. 10 years as a speech therapist. I am glad i came across this very important issue. I deal with this everyday at work.

I just want to remind parents that I know how important getting services are for you child, especially in the early years of school.

I have to remind parents constantly...and i had to remind myself when my daughter was going through the school system, that i had to keep one thing in mind when it comes to requesting services.

Lets take speech again, ...

Is the child's speech for example impacting his, her educational progress. This is stipulated in the law. Just because a child may sound like they need speech services, and just because a child has a awful disorder as TSC doesnt mean the child automatically qualifies for services. In the school setting, does the child need services because their disorder impacts their educational progress? if the answer is yes, then the child should be evaluated for the services.

If the answer is no, it still doesnt mean the child shouldnt get speech services. However, the child should seek services outside the school setting.

 

Answer to Joy's Question
3/25/2009
Joy

Depending on what your child's needs are will determine how much therapy she will receive. I suggest that you get documentation from your doctor stating that she needs therapy. ( Let's use Speech as an example) Make sure that he includes in the recommendation that " In order for her to progress in the general education curriculum she will need (Speech) therapy 3 times a week for 20 minutes one on one with the (Speech) Therapist. Your doctor does not want to put any subjective words in his/her recommendation like "may need" or "would benefit from" make sure that he/she says "will need." Then have your doctor state what harm will be done if she does not receive Speech. This will give you leverage going into the IEP meeting. If you know there is a shortage of speech therapists in your school check out the local hospital or private speech therapists in your area and ask if they will contract with the school. Then if the school states that they do not have enough speech therapist you have a resource for them.

Remember they can not tell you that they don't have the money to pay for the service. You daughter is entitled to a free appropriate public education (FAPE). If the IEP Team agrees then they have to provide the therapy.

Hope this helps


Dena

Therapies in a school setting
3/21/2009

Dena,

My question is getting enough therapies in the school setting for my daughter. She is 5 years old and will be entering the school system in the fall. We are working on getting her IEP planned out. I would have her getting all therapies everyday if it was up to me but our district is short on therapists. So I am looking for any documentation justifying more therapy is best for her. I am also wondering if you have anything showing me how to put it in the correct technical termonolgy for them. Is there anyway that if the district is short on therapist is there a way that they can pay an outside therapist to come in? I hope this makes sense to you any help would be appreciated.

Thank YOu,

Joy Leist

Dena's Answer to Angela
3/11/2009
Angela, we do have an IEP publication on our website specifically written for parents of children with TSC.  You can view it here.
Angela OH
3/11/2009

Do you have a publication about IEPs that might help me?

Welcome to my blog!
3/9/2009
Greetings from TS Alliance headquarters and welcome to our new educational/school issues blog.  I'm looking forward to seeing and answering your questions.  But, if you have an urgent need, feel free to call me at 800.225.6872.  -- Dena

 

 

 

 

 

 
 
 
 
   

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