Will My Child with Chronic Pain/Health Issues Ever Be Able to Go to College? Part 2

Brought to you by Creative Healing for Youth in Pain's Parenting Blog

Samantha Levy, PhD
July 28, 2022 / 4 mins read

Many parents who have children with chronic pain and other health issues wonder if their child will be able to go to college.

In Part 1 of my two-part series, I discussed managing expectations, helping your child choose the right college, and how to actually enjoy the college application process. In Part 2, I discuss how to help your child prepare for going to college after admission.

Congratulations! Your child with chronic pain has been accepted to college. There are a number of things that you can do ahead of time to make the transition easier.

Take Advantage of Academic Accommodations Before College

In high school, your child should be getting academic accommodations that are helpful for them. But it’s not just acquiring the accommodations that’s important -- they need to use them. For example, in order to get accommodations for the SAT or ACT tests, the student needs to demonstrate that they’ve had similar accommodations in high school and took advantage of them. It is not enough just to have been offered the accommodations in high school.

In addition, it is best to have had accommodations in high school in order to request them at the college level, and learning to use accommodations in high school makes it easier for the student to access and utilize them independently in college. Examples of academic accommodations include being given extra time on assessments, taking assessments in a quiet environment, obtaining extensions when requested, getting assistance from certain software programs, and obtaining another student’s lecture notes.

When you are dropping your child off at college, go with them to visit the office that deals with these accommodations. It is often called “Disability Services” or something similar to that. They will usually offer many services that you aren’t even aware existed.

Discuss Room and Board Accommodations with the School

There are also room accommodations that have been helpful for kids with chronic pain. The ideal set-up depends on their issues. Many of my clients request either a single or double room (as opposed to a room with three or four students) or the use of a bathroom with as few students as possible (for clients with IBS). For students with mobility issues, accommodations may include living in a dorm near the main building that has their major or near a dining hall.

One of my clients requested a single room and private bathroom so that he could have remote therapy sessions in his room, do hypnotherapy in quiet privacy, and not feel awkward using the bathroom frequently.

However, it is important to consider the pros and cons of a private room for each student, as it can be isolating. If the student is extroverted, having a single is usually not a big deal. One of my clients lucked out and got a single in a suite that opened to a common room, so he had the best of both worlds.

It is important to talk to the school about all of the housing options and consider which is best. Then, you can have a therapist or physician write a letter or fill out a form requesting the ideal housing option and explaining why your child needs it. Be sure to emphasize that the option will maximize the student’s academic success. After all, it is an academic institution, and they respond best to that argument.

If your child has dietary restrictions, you will want to speak with the head of the food services at the college. The chef will want to meet with your child to review all of their dietary needs. Colleges are very familiar with accommodating students now, so it should not be a problem. Make an appointment with the head chef before drop-off, so you have that in place when you arrive.

In addition, explore what the cafeterias are like and the other food options in the area around the college if your child has particular dietary needs. You can request that your child be allowed to have a mini fridge and microwave, and load their dorm room with foods to prepare on their own. Many of my clients with dietary issues also make sure they have things like supplement shakes on hand, to drink as needed.

Break Down the Skills that Your Teen Will Need

Like anyone going off to college, your child will need to learn how to do laundry and take care of basic needs. However, they may be behind in learning some skills because they’ve been focused on recovery. Make sure your teen starts working on the necessary skills far enough in advance so that they’ve got them down pat before going to college.

Additionally, there are things your child may have to do that other students don’t have to do, such as fill pill boxes, do exercises, and make doctor’s appointments. Make a list of things they need to be able to do independently in college and start working towards that goal for each task. It is helpful to follow this sequence in teaching any skill:

1. Do it for your child.

2. Have your child watch you do it.

3. Watch your child do it under your guidance.

4. Have your child do it alone.

Let’s use the example of filling a weekly pill box:

First, have your teen watch you do it. The next week, watch your teen fill the box and make sure it is done properly and in an organized manner. Then have your teen do it alone and just check it afterwards until you are convinced the skill is firmly in place.

Depending on what your child has been dealing with during the course of their medical issues, there may be many other skills that need to be worked on before going to college. That may include things like making plans with friends, waking up independently, getting out of the house on time for scheduled activities, or eating outside of the house.

College vs. High School

Don’t worry. So many kids with pain go off to college -- after barely scraping by in high school -- and do great because of the benefits of being in a college environment. For instance, in college, students don’t have to be in class for 8 hours a day! They can choose classes that don’t start too early in the morning, and build in breaks during the day. Additionally, they can take classes that they’re really interested in and avoid topics that they struggle with.

Making friends can be easier because peers are around at all hours of the day and night, and it doesn’t require a ride to get to them. I have a client who is very introverted and did not socialize much outside of his home during high school. He has a single room in college, but has found ways to socialize. He texted a message in the dorm hall Discord about setting up a poker night, and several other kids joined him. He also joined a club at his school and sometimes studies in the dorm common room so he isn’t too isolated in his own room.

When College is Far From Home

For students who are venturing far away from home, decide in advance which practitioners they can and want to continue to see virtually. If there are practitioners who they cannot see virtually -- such as acupuncturists or massage therapists -- or if they prefer in-person appointments, research the practitioners in the area around the college. The college health services department can be a good place to start obtaining referrals for local practitioners.

Handling the Drop-Off

Going to college is a tough transition for parent and child, even under typical circumstances. It is likely that your child has not become as independent as other kids when it’s time to leave for college. Teens with medical issues typically spend a lot more time at home -- and with their parents -- than their peers do.

When you drop your child off at school, they might want you to stick around a little longer to help them find where their classes will be, where the health center is, to go with them to the student disability services offices, to talk to the cafeteria head, and so on. You may choose to stay in the area for a day or two, as a transition time, once your child starts sleeping in the dorm.

On the other hand, don’t be surprised if your child wants you to leave right away. There is no right or wrong way to go about this process. Children who figuratively clung to you at home may shun you when you drop them off at college. It is difficult to know how they will react. Whatever they do, it’s their way of dealing with their feelings.

It is best to be calm and show confidence about your child’s ability to be successful at school, even if you are anxious about it. Remember when you left your child at preschool for the first time and the teacher told you to act confident about their ability to stay, even though inside you were freaking out? It’s like that!

Once you leave, be sure to check in with your child about things that don’t relate to medical issues. Ask how classes are going, what they’re doing socially, what the food is like and so on. Let your child decide if they want to talk about medical issues.

When your child returns home for the first visit, it may be tricky to know how much to help and how much to let them be independent. You’re used to doing so much for your child at home. Take the lead from them. Sometimes kids want to assert their independence when they return from college, while some kids who have been totally independent at school fall back into old habits of being taken care of when they return home. Be prepared for both scenarios, and talk to your child about what level of involvement they want from you at home.

If your child struggles significantly at school -- for either physical or mental health reasons -- and needs to take a medical leave, do not worry that it will derail them forever. This happens. Sometimes kids need a boost in services that are too difficult to obtain while at school. Some kids take a semester or two off and return to the same school. Some decide to transfer to another school that is a better fit or is closer to home. Remember, we cannot control the tide, but we can change the sails! Your child will get from point A to point B – it just may be a windier road than expected.

Take Time For You

When your child leaves for college, take the time to take care of yourself. You’ve been taking care of your child with many additional needs for a long time -- this is your opportunity to take care of yourself in a way that you haven’t for ages. Pick up a hobby, read a book, exercise, meet friends for lunch, and so on. Reconnect with your spouse, if you’ve had little time together. At first, your child may still need a lot of your help (from a distance) navigating college, but that will decrease over time.

If you feel relieved when your child leaves, do not feel guilty about that! You have done a great job in getting your child to college, and now you have time to heal from what you have all been through. Even though you want them to be independent and feeling well, you may miss taking care of your child. That is normal, too. It has been your job for a long time, and it is tough to let go. Let the moments unfold without judgment, and with kindness to yourself.

Dr. Samantha Levy, Ph.D. is a clinical psychologist who received her Ph.D. from Georgia State University in the Child and Family specialty track. During her clinical, child centered internship at UCLA, she became involved with the Pediatric Pain Program. Subsequently, she obtained her postdoctoral training there. Depending on the specific situation, Dr. Levy works either with whole families, individual children/teens, or parents. She employs an array of psychological orientations (e.g. CBT, play therapy, mindfulness, hypnotherapy, ACT, IFS), to help the children/teens with their pain and any accompanying emotional issues. She helps the families understand the connection between the physical pain and emotional difficulties (mind/body connection). She teaches parenting skills and helps parents facilitate their child’s difficult, courageous journey back to functioning more fully in the world again. Dr. Levy runs the CHYP monthly open parent group and the CHYP small group parent groups.