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School and Life After High School

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School and Life After High School

Hi everyone,

Tara Brinkman (psychologist from St. Jude), Wade and I will be meeting with anyone who brings their IEP to camp to discuss what is working and what isn't. Our hope is to write to each school with the participant and share their strnegths and concerns. We also want to really help with planning for life after high school.

Many of the transition plans I have seen are vague or unrealistic or set the bar very low. Can you share your experiences (good and bad) with the school system.

Thank you.


Luke (14yo heading into 9th grade) has a 504 mostly allowing for more time on tests and less homework. We've been fairly fortunate in that our school is small and appreciates/requires parent participation. So, they've been responsive to our requests. We have had a few individuals though who are either clueless (sorry, not PC) or don't care. Sometimes it is important that we step in and inform, sometimes we let Luke advocate for himself, it really depends on the person and issue. 

We too really try to focus on Luke's strengths and figuring out accommodations for his weaknesses. We appreciate any additional insight you can provide us and his school. I'll track down a copy of his 504 and send it along. 

With hope and peace, 

Janet, mom to 14yo Luke (brainstem JPA dx at 9yo)


I'm very interested in the transition steps.  We homeschool (15 yrs - going into 10th grade) through the local school district, and so his IEP is pretty vague already, but knowing what other brain tumor survivors have had for transition goals would be helpful to guide us on this part of our journey.


Grace is 17 and heading to college in the fall.  Her previousl 504 allowed for extra time for testing, less homework, extra time to make up assignments and a plan that allowed her to leave class to go to the nurse for medication and rest when a headache hit her.  Grace isn't particularly good at advocating for herself so I often find myself in that position on her behalf.  We need advice on how to handle these types of things at the college level.  This is going to be a huge transition for her and I want to do everything we can to help it go smoothly and ensure her success in college.


Thanks Kelly. David Strauser from the University of Illinois will also be at Teen HUC. He is going to review the disability offices at college and accomodations. Some of the mentors who just finished their first year will also be sharing their experience of what worked and what didn't. 

It is awkward asking for accomodations. We will try to make people more comfortable and help with ways to talk about your strengths. Kelly, can you send Grace's IEP and we will help her with specific accomodations which make work in college?



Jacob was diagnosed at the very beginning of 8th grade. It took us until the last day of school to get an IEP in place. He left the hospital after his biopsy with recommendations for a 504. The school told me it was too much paperwork but that they would work with him.

When that failed, I pushed for an IEP. We live in a very small community, there are less than 125 kids in the whole high school. There are not many kids with IEPs. He entered High school with a plan in place. My husband and I met with all the teachers and made sure they knew all his strengths and weaknesses. He was put in a special class where he could work on his homework from other classes and receive help with it. All was good until one teacher decided she did not have time to follow his IEP.

I have struggled with the school and their lack of responsibility in following through. His plan states he is able to retake any quiz or test he gets an F on but does not state how he can retake it. When I asked for it to be put in, I was told it didn't need to be specific. I will definitely be sending his IEP with him.  Any input in dealing with the school is very appericaited! Thank-You


Offline favorite subject.  School and Transitioning afterward - - - scares the heck out of me!!!  Kyle is 16 and an incoming junior.  Our school district has been WONDERFUL with his IEP and his education thus far.  No complaints at all.  We live in a school district known for good spec ed services and we have been very, very lucky.  I know this is not true around the country.  My worries lie in after HS - colleges that offer spec ed services or acoomodations - love that you'll have someone at camp to discuss these issues and check out what colleges offer.  Love too that older survivors will share their stories.  Stacia - can you make sure Kyle is listening during these talks??  (hahaha)


"The school told me it was too much paperwork but that they would work with him." Deballen, this is one of my pet peeves! Schools love to do this because once you have an IEP or 504 they have a legal obligation to follow it (at least that's the theory).

Nothing they say in a meeting or other communication is enforceable unless it's in writing in the IEP. The same for any meeting requests you make -- if it's not in writing, you didn't make it. Depending on the regulations in your state there may be timelines for them to respond, but those timelines only apply to written requests.

The terms for retaking tests absolutely can be in Jacob's IEP, there is nothing in the law that prevents specifics about accommodations. Including the terms creates a legal obligation for the school, that's why they don't want to include them. I would argue that the terms should be included so that his teachers have clear guidance and are not burdened with trying to figure out how to implement the accommodation. Life is easier for everyone when requirements are clearly spelled out.

If you have a friend, neighbor or relative who is willing to attend IEP meetings with you, I highly recommend that. As you know, the meetings can be very difficult and emotionally draining for parents, so having an ally who's less emotionally involved with you to take notes can be a big help. If you know anyone with any connection to the schools or education in general, that person would be perfect, but you can bring anyone you want to an IEP meeting. Or you can make an audio recording of the meetings, although you generally must give at least 24 hours notice (in writing) of your intent to record a meeting.

What you have right now is a compliance problem, and failure to comply with an IEP can be a serious violation of the IDEA. Sometimes, just saying that you know they are not in compliance can be enough to get a school to shape up. Sometimes it's worth it to hire a special education advocate. I have a friend who lives in a small school district who was getting nowhere with accommodations for her son. When she brought in an advocate who clearly spelled out what he needed and how the school could provide it, they completely changed their tune and he now has wonderful supports in place.

Wright's law ( is a wonderful website for parents dealing with special education issues. They have tons of information and even sample letters, etc. for communications with the school.

I hope this helps a bit. As you might guess, I have a lot of experience dealing with an uncooperative school system. I know how frustrating and even heartbreaking it can be when you just want them to level the playing field for your child.


HI Everyone, 

Transitioning is always hard, whether from middle school to high school, or high school to college/work.  These are definitely areas that will be talked about with everyone throughout the trip.  

Additionally, as Stacia previously mentioned, we will be working with the participants and their IEP's to discuss what is working for them and what they struggle with.  Stacia and I will work on sharing these insights with the schools and parents in a hope to better meet the needs of each of the teens.  If you haven't already, please email your child's IEP to Stacia at  Additionally, please let us also know what you see that is working and not working in terms of your child's IEP.  JenC did an excellent job of explaing your rights and offered some wonderful suggestions!  Thanks JenC. 

Looking forward to seeing all of your teens soon!



My Lexie is 16 and an rising junior. She had an opportunity to take a community college chemistry course because her high school is so small it doesn't offer HS chemistry. She ended up doing well, but I was shocked to find out from their disabilities person that extended time on tests and a separate space were the Only accomodations she would get.  She has all sorts of great accomodations to assure she is successful in her HS, like no blank spaces, word banks, etc.

So it is of great interest to me to discuss what the standard is for college accomodations, as compared to HS accomodations? I imagine it varies, but it would be good to know what the standard is, especially since she went to a tiny private HS, and has no official IEP or 504 at this time. Her school is applying for her to have extended time and an separate space on PSAT's and SAT's.

Thanks all.

Alice Williams

I didn't send Matt's IEP but am extremely interested in this topic and in his school receiving helpful relevant information! We struggled to get an IEP in place at all and now there is one but I'm not sure it's specific enough or actually helpful. His teachers are all so kind and they just love him. But sometimes I don't want them to tell me what a good kid he is - I just want them to figure out a way to teach him math! :) We have very little in way of a transition plan or goals. I think kids with brain tumors are overwhelming to school districts. There is so much variation in different kids, they don't see very many of them, and they want to be sensitive to the sometimes medical fragility. It's a balance. I wish I knew more about what to push for. I think Matt's school would be open to my suggestions but I don't even know where to start, so I can't fault them for being overwhelmed.

I have been battling the school system since Tommy first came back from his treatment in New York in 2004.  The school doesn't seem to understand how to deal with Tommy.  Now I will be the first to say that it can be frustrating when dealing with Tommy, but if you understand what triggers him then deescalating him is an easier task.  Tommy got so depressed from not fitting in with his other classmates that he actually had a breakdown and was hospitalized for suicidal thoughts in February 2013.  He was then placed into a partial hospitalization program through our county Human Services which was located at his school.   He had two more hospitalizations; October 2013 and April 2014 for depression and suicidal thoughts.  He is the first child to spend as long as he did in the program which put him way behind academically due to most of the day was attending groups.  He is now in the emotional support classroom full time, but he is probably on the level of a 7th grader instead of a 10th grader.  It doesn't seem like the school cares if he gets an education.  I worry how he is going to deal with the real world once he graduates school.  When school is in session, Tommy's stress level is raised to the max.  I usually get 2-3 phone calls a week at work for behavioral issues and end up having to go to the school.  Any suggestions would be greatly appreciated.



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