Helping Your Child With a Health Condition Prepare for Adulthood and College

The transition to young adulthood is filled with unknowns and stress for “typical” kids. When it’s your child with a lifelong illness, the process is even more complicated.

If your young adult can take over their healthcare needs as an adult, alone or with assistance, the pediatric specialists usually start the transition sometime in their teens. This “transition period” can take years. There is no hard-and-fast rule about when or if you entirely step away from healthcare decisions, but a period of transition can help your adolescent gain more understanding, confidence and decision-making over their own healthcare.

When my daughter was around 16 years old, I noticed the doctors started directing their questions to her. Because I was so used to answering them for her, it took me a while to figure it out. When I tell this story, I make fun of how oblivious I was until the light bulb went off.

“Oh, now I get it! The doctor doesn’t want to hear from me anymore. He only wants my daughter’s answers!” I laughed to myself. These appointments helped my daughter gain some experience asking her own questions to the doctor while learning about her health conditions.

If a new health concern comes up during the transition period, it is an opportunity to let your child take the lead. We did this when she was diagnosed at 18 with another major health condition. She took the lead on the new diagnosis. She did all the research and chose her medications, things I normally did for her. Her transition into college was easier because she had already experienced taking charge of one of her health issues. Depending on your child’s ability to understand their healthcare issues, you may still need to be involved for a while or even for the rest of their lives.

Medical Intervention During Transition

Surgery or a major medical intervention is something else that can happen during this transition period. My daughter needed open-heart surgery during college. While I had been educating myself for years on this upcoming surgery, her involvement in the decision-making was really important. Honestly, it was hard for me to “let go” but in the end, she decided on the exact surgery, hospital and surgeon. Happily, it was a successful surgery!

It may seem like a good thing if your child can manage their own appointments and medications into adulthood. It can also present another set of challenges. They may want to push their health care boundaries. These kids are tired of all the doctor appointments. I remember my daughter’s gastroenterologist said that many teens experimented with gluten-filled food in their teens and usually have a new understanding of their celiac disease after having a bad reaction. I also know a young woman who started rock climbing after her 18th birthday to prove to herself that she could do it even though she had many heart surgeries to correct her tetralogy of fallot (TOF) heart defects.

If your young adult is planning to attend college, there are more things to consider:

Finding New Doctors

Even if your young adult only sees specialists during school breaks, you should probably find doctors near the college in case of emergencies. Our daughter attended a nearby major university, so she was able to see her regular doctors throughout college.

College Accommodations

Does your child need some special accommodations for college? First, help them set up a 504 Plan before leaving high school, because colleges do not use Individualized Education Plans (IEP), but do follow the law for accommodations in a 504. If you don’t understand what is included in an IEP vs. a 504 Plan, the PACER organization which is funded by the U.S. Department of Education’s Office of Special Education Programs spells it out.

Secondly, contact the university’s Disability Services office. Disability offices at universities are generally very helpful and will let you know the resources that are available such as classroom and dorm accommodations, transportation service and more. Better yet, have your young adult contact them!

Thirdly, managing food allergies or celiac disease is easier than ever when going off to college because cafeterias typically have stations for almost every known food allergy. You may also want to contact the dietician in the dorm to make sure they can accommodate your young adult’s allergies.

Finally, I know last-minute requests can be taken care of as well. Our oldest daughter seriously injured her foot a week before college and was in a cast using crutches. I got on the phone with the Disability Office and they were amazing. Although we didn’t need it, we could have had disability parking while moving her in. They scheduled a van to bring her to and from classes. She was also able to jump to the head of the line in the cafeteria. These accommodations helped our daughter have a successful freshman year.

Check with the Disability Office with any questions you may have.

Although this is such an exciting time for most kids, the transition to adulthood for those with health concerns can be much more complicated. Remember the transition doesn’t happen overnight. It may take years. Take it one day at a time and talk to your child’s pediatric specialists for help.

And the reality is that you will probably always be a major resource for your child, even when they are an adult.