Can you believe your child is starting high school? I know, they were just a toddler yesterday. As you begin this important part of your journey, remember the specifics of this information varies by state, school district and even by school. You know your child best so you want to set up services that work for your child. I tried to cover all the aspects for all children with all their varying abilities so some of these items may not apply to you. This might look overwhelming, but if you take it one step at a time, you’ll do great!

Learn about the “transition” program in your state (your school/district is covered below)

This is the big picture. You want to know state guidelines for handling the transition out of high school. Start by searching the web for: “[Your state] Department of Education Transition Program;” for example, “Colorado Department of Education Transition Program” and often it is abbreviated to CDE Transition Program. This is the link I reached.

Decide on the best class setting for your child. Usually the options are a self-contained classroom/school, a self-contained classroom/school with some inclusion, a “resource” setting where your child receives special education supports but goes to regular classes or no support/full inclusion. You and the school may not agree on this decision, but I would encourage you to push for as much inclusion as is appropriate for your child.

My son was based in a self-contained classroom but was included in typical classes for about half the day. He had 1:1 for reading and math, did an adaptive PE class that had students with and without disabilities together and went to typical cooking and computer classes. It worked well for him.

Learn whether there are different types of diplomas offered in your school (Individualized Education Program/alternative diploma or regular diploma).

Search the web for: “[Your state] types of special education diplomas” to see what options exist. There may not be a difference in some schools. Learn about the requirements for each and what they each may mean for post-high school education. It may or may not make a difference. If your child was to participate in after-school programs, they may have to keep certain grades. Make sure your child’s Individualized Education Program (IEP), or 504 if applicable, is written to provide appropriate supports for whichever path they take.

In our state, every child gets the same diploma.

Look into what kind of ‘job training’ they have, both in the school and off-site.

Some high schools will offer job training during the high school years and others will not offer it until their school transition program. A question to ask is if your child likes the job, can they keep it when they leave school? Often, they cannot because they are only job experiences, and the school needs to keep these so all the children can try out different jobs.

You may have to provide the job experiences in high school. That means you may have to find the job and provide the job coaching, if it is needed.

My son was offered “job experiences” during high school – one day a week when he was a freshman, two when he was a sophomore, etc. But they were only job experiences – my son could not have stayed at any of the jobs even if he liked it or was good at it. I didn’t find this out until he was a junior in high school.

Keep your child active.”

Get your child involved in some after-school programs, such as sports, music, etc. Your school may offer support for your child after school, but most likely it will be up to you to make it work. The article “Schools Cannot Deny Equal Opportunity for Participation in Extracurricular Activities” provides helpful advice for making it work.

My son started helping the freshman football team when he was a freshman (with my help). By the time he was a junior, he was doing it independently. Fourteen years later, he is still helping out. He goes to all the varsity games now too. He goes to the pre-game meals and rides the bus with all the players. He is even down on the field with them during the game. I know children who have been part of music programs and others who have helped build sets for plays. Others helped out in the library or ran cross country and track.

You can also look into programs at your local recreation center or private programs like Special Olympics. Daily exercise is important and should be emphasized early on. Check out the following links for ideas:

My son participates in unified programs at our local recreation center and in Special Olympics. Staying active is SO important.

Start incorporating transitional goals into your child’s IEP.

Transitional goals can be daunting to work through. Click here for a great resource.

Start thinking about what where child will go after high school – straight to a job, the transition program or onto college? Then consider what your child will do after that. Will they work? Go to a day program?

With that in mind, are there any goals you need to incorporate into your child’s IEP that will help with the transition to adulthood? They could be anything from life skill goals to inclusion for social skills to reading and math and science. Think about what your child needs.

My son did 1:1 reading, a computer class, a cooking class (took it three times), did several PE classes and helped with some of the sports teams. That worked well for him, and it is what I thought best for him as he went through high school.

Learn about the school/district’s transition program.

These programs typically are for ages 18-21, but it varies from state-to-state. They might be in the same school where your child is going now, or it might be in a different location. Search the web for “[Your state] high school 18-21 programs.” For Colorado, I got links to several of the schools and school districts in the state.

My son stayed in school between the years of 18-21, but I created his own transition program. I found a job at our local grocery store so instead of continuing work at a “job experience,” I asked them to train him at a job he could keep.

In the transition program I set up this schedule:

  • Got to school to do a reading and a PE class.
  • Go to work.
  • Go back to school and help out with the football/other sports team.

At age 21, the only thing that changed was that my son did not go to school in the morning. He went straight to work, but he still did go help with the football, other sports teams after work.

It made the transition out of school much easier for my son (and for me), and ten years later, he is still working there.

Research post-secondary education for your child, if you think that might be appropriate.”

]The National Fragile X Foundation’s website has a great page on planning for college. As you work through this, make sure you look at the services and supports offered at the school. Talk to other parents who have sent their children there, visit the program, spend the night and ask lots of questions! Also consider that maybe a trade school is appropriate for your child too.

Start to learn about the adult services/waivers in your state.

Start by searching the web for: “[Your state] Medicaid and waiver information.” Look into the programs your state offers and get on the wait list as soon as your state allows. There are different kinds of waivers, and there may or may not be a wait list for services. Some wait lists are several years long. You can also contact your local Arc, your local disability organization and talk to other parents for more information.

THE BIG ONE…Many aspects of your child’s life change when your child turns 18 years old so when your child turns 17 years of age (or earlier), start researching and planning!

Getting a Department of Motor Vehicle (DMV) – issued photo ID card, if you have not already done so, is important! Once your child turns 18, a school ID is no longer accepted by security screening at the airport (TSA). I searched the web for “Colorado DMV ID card” to find answers for my state.

I found that getting the ID card prior to your child’s 18th birthday is cheaper and easier than after they turn 18. Call your local DMV office and ask about their requirements.

Registering for Selective Service is required for all men ages 18-25. You can have this automatically happen when you get your DMV-issued ID card, or you can do it separately. We know this is a concern for parents of children with a disability. According to the Selective Service System’s website though, “If your son is not confined to an institution or homebound (completely bed bound), he is required to register.”

Before your child turns 18, you will also need to look into guardianship or other options. This area varies from state-to-state, sometimes significantly. In some states, the parents can file the necessary paperwork. In others, you have to have an attorney. Start by searching the web for “[Your state] guardianship.”Spend time on this one, figuring out what is best for your child. You might also call your local Arc to see if they offer a class on this topic, and you should certainly talk to other parents in your state to learn more.

Looking into applying for Supplemental Security Income (SSI). You can also search the web for “[Your state] applying for SSI.” Again, reach out to your local Arc, your local disability organization and/or other parents to learn about the process and find what works in your state/area.

The last big step to take before your child turns 18 is to look into your health care options. Again, start by searching the web for “[Your state] health care options for people with developmental disabilities.” You should also look at “The Affordable Care Act – What Disabilities Advocates Need to Know.”

My son is still on our private insurance, but he also has Medicaid. Right now that works for us.

Additional Resources

Yes, it is a lot of work for your child to become an adult, but your goal is to make them as independent as possible. Get started early so you are not overwhelmed with needing to do everything tomorrow. Use the ideas here to come up with your own plan. Your child will be an adult before you know it!

Jayne Dixon Weber, director of community services, NFXF

Jayne Dixon Weber
Jayne served as the NFXF director of community education (and other positions over the years) from 2007 to 2023. She has two adult children, a son with Fragile X syndrome and a daughter. Jayne is the author of Transitioning ‘Special’ Children into Elementary School, co-author of Fragile X Fred, and editor of Children with Fragile X Syndrome: A Parents’ Guide. Jayne likes to read, enjoys photography, and goes for a walk every day.