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This blogpost is for the future college students with disabilities and their parents. Having a disability often introduces more challenges, and hopefully by providing some guidance, you will both feel more at ease with this major life transition!
Disclaimer: I will be using the term “parents” to refer to whomever was your primary caregiver with recognition to various home lives and therefore not meaning who gave birth to you but rather who cared for you and you looked to as a parental figure.
A cheat sheet for those of us who want the answers without reading ;)
- Have an open dialogue
- Set up doctors nearby
- Make sure to have at least a month of meds
- Check your college resources
- Deep breaths
A tidbit for young people to gain a little insight into our loving, yet sometimes overbearing, parents
For most of your life your parents have probably been there to take care of you, especially when it came to your disability. Whether it was accompanying you to the doctors, helping you navigate the world, or providing extra accommodation, those of us with disabilities know our parents likely play a huge role in our day-to-day lives. I know for me, when I was diagnosed at 12 with a disease that entailed 5 hour IV infusion sessions at the hospital on a monthly basis, it was beyond scary. I will never forget the day my doctor shared all of this overwhelming information about my disease. I remember going out into the hall and crying, trying to wrap my brain around this massive change. In that moment, I was scared and alone. Then my dad came out and held me. I don’t remember what he said, but I remember the fear dissipating, knowing that I wasn’t truly alone. Many of us have had that moment, where we were given life-changing news and suddenly, we were no longer “normal”. For your parents this was probably a huge scary moment for them as well. Their baby now has a disability that will affect them for the rest of their lives, making our daily functioning more difficult than it already is. Many of us have come to rely on our parents for our needs as we navigate the world with a disability. But as we get older, we start getting more independent. Maybe you start taking charge of your own medical necessities; driving yourself to appointments, making decisions about medicines, choosing what treatment plan or doctor is best for you. Independence can be foreign and exciting, but for your parents, it might be terrifying. What if something happens and they aren’t there to help? Finding that balance between supporting you and granting you your own freedom can be tough. I had difficulty seeing this, and at times even would feel infuriated when my parents expressed constant worry and anxiety. This becomes especially challenging if you are going off to college and your parents are miles and miles away. This huge change can be stressful and anxiety-inducing on both ends, but there are a few steps you can take to make this transition more comfortable.
For the parents and students looking for tips
Parents: I think the best way to prepare is to have an open dialogue with your child a couple months before they plan to move. Let them know you are there for them and will be there to help guide them as needed, but also instill confidence in them that they can handle this change. Together, you can make a list of things to accomplish before they leave. These things can be done together, but it may be a great time to let them take charge a bit, allowing your kid to be in charge of communicating with the school and doctors. Once they arrive at school these conversations can continue. But be careful to not assume they need help. Instead, a great way to have a healthy conversation is to ask your child if they want advice or just to have you listen. This lets your child be in charge of how they want to structure the conversation and allows them to be independent, while also seeking help if that’s what they want. Empower your child! It will help both of you grow.
Students: One important thing to take care of prior to going to school (at least a month in advance procrastinators!) is ensuring you have doctors and medicines taken care of. This is something a child can do on their own or with the help of their parent. I am going to be writing to the individual student themselves, however, parents please also pay attention! It is a good idea to do a check-in with all your doctors about a month prior to leaving. This should include the specialists who treat your disability, but also your regular doctors, dentists, etc. It is good to make sure nothing underlying is going on, and will provide you a nice gap before needing to get checked out again once at school. It gives you time to settle in. Depending how far you are going away to school, it is likely you will need to establish with new doctors to continue their care in their area. This is part of the reason to try to not procrastinate, as it can take a while to get this all set up. I would recommend first visiting your specialists and letting them know where and when you are going to school. Most doctors have a lot of experience with young people going away to school and will likely help you create a plan. If needing to transition doctors, you or your parent can still ask to have your current doctor as the primary one in your care but you can use a new doctor for in person appointments or emergencies. It is important to get your doctors communicating early on so everyone is in the loop and on the same page. Your current doctor may even have a referral for who you should see. If not, just make sure to call a new doctor a few weeks before leaving for school and tell them the situation and plan. This allows plenty of time if there is a waiting list or if you need to do a virtual visit first to establish care. Also, be proactive in providing both your current and new doctor with the other’s phone number and ask them to call as soon as possible to begin this transition.
Parents and Students: As far as medicines go, again I would first see what your current doctor recommends, but if possible, it's a good idea to try to refill your meds for a month or even better a 90 day supply (if pesky insurance allows it) right before you go. This is just another way to ensure you won’t have to worry or stress about needing to refill those right away. In addition to prescriptions, it is a great idea to bring extra over-the-counter meds you take or may need while away (tylenol, benadryl, etc). I know for me it helped ease a lot of anxiety to know that I had a supply of medicines I may need.
Student: Research, research, research! I know research isn’t exactly fun, but hey, if you are going into college, you might as well prepare with something essential. Research your school in depth. If you are like me, you probably already want to do this just to see what clubs and fun coffee shops your school has to offer, but also make sure to check out their disability resources. I also highly recommend emailing a counselor or advisor ahead of time (you know the rule; 1 month), to discuss your disability and see who you should reach out to for accommodations. There are many great accommodations and resources out there to help make school more accessible and easier.
Whether you are a parent or a student reading this, the most important thing is to take a few deep breaths. College can be scary with or without a disability and navigating it while handling your health care can be extra stressful. Just remember, it is going to be okay. These tips are meant to ease some of the stress and offer helpful advice for making the transition as smooth as possible. When you get stressed or worried, take a few deep breaths and take a little break from the planning. Drink some tea, read a book, and once calmer then return. And don’t be afraid to ask your parents for help. It doesn’t make you any less of an adult or independent, I promise.