Growing up, I truly believed everyone went to college. My parents emphatically emphasized the importance of education and also being able to financially support yourself. They often used the phrases like, “When you go to college…” and “When you have your first job…”
Consequently, I thought that graduating high school and going to college was the normal course of events for every child. My parents described being able to support oneself as a joyous accomplishment and something to celebrate.
It really wasn’t until the latter part of high school and the beginning of college when I recognized this was not always the case, as many kids didn’t attend college. My parents somehow left this part out; not because they thought less of people without a college education. In fact, they taught me respect for all people. It was really more because they both truly valued higher education and what it could mean for young adults..
When Life Throws a Curveball
In raising my own children, I followed my parents’ lead, emphasizing education and supporting oneself. My husband and I began instilling this value in our kids at a very young age. Things were on course for my older child. However, the upward education trajectory for my son came to a grinding and screeching halt in 9th grade, when he became ill with major gastrointestinal issues, fatigue and dizziness. Getting out of bed and leaving the house was even a challenge.
We searched for answers in all directions, checking with doctors across the country. A few of the doctors were able to put names to what he was experiencing, but not one had a total solution. There was and still is no definitive protocol for his condition. Therefore, we only had partial success in getting him better.
Going to school full-time was no longer an option and out of the question. He simply did not have the energy or stamina.
We found a small private school where he could attend part-time on a flex schedule; taking a couple classes at a time. We were even able to schedule his classes in the afternoon, which was wonderful since it was extremely difficult for him to get moving in the morning. We felt especially lucky to even find a school with such flexible scheduling options.
Our new goal for him was just to be able to “stay in school” in any kind of capacity and be able to complete some kind of education. No longer did we think about what could be beyond the current school year. It became more and more difficult to picture anything beyond middle school; let alone high school. Completing one grade at a time became the overarching objective - one day / one week at a time..
Just finishing each school year was a huge feat! Finally, my son finally graduated high school; albeit two full years later than usual. As bright as he was (and still is), he was never able to handle a full-time load.
Considerations Going Forward
At this pace, completing a college education feels quite daunting… both to him and us. In fact, continuing to take classes would leave him no energy for anything besides school. Between terrible fatigue along with brain fog (dysautonomia) and a host of other things, college certainly doesn’t seem realistically doable.
Of course, my son’s situation no longer fits neatly into the picture of what was instilled into him growing up - a college education and financially supporting himself. Our picture for him and his own picture for himself no longer fit.
This has resulted in a jolting reality for him. Being chronically ill means the vision for his life has to totally change.
How does he handle this? How do we, as parents, handle this? What kind of goals can he set for himself since he can not always count on his body holding up? He doesn’t even know how he’ll feel from day to day. What can he do to create meaning and purpose in his life? How do we plan as a family? How do we help him gain self confidence?
Here are the 6 steps we are taking to address these questions:
Redefine early adulthood goals. Let your child know that an alternative plan to what was dreamed of is “okay.” Working a few hours a week might be just as meaningful to your chronically ill child as a full time job for someone else.
Find a career coach or someone who thinks outside the box. Ideally, he/she would have hands-on experience working with chronically ill individuals, or at least be an individual with great empathy for those who are ill or have unusual circumstances.
Look at all of the angles where part-time work from home could be possible. We are lucky to live in an era of great technological advances. So many areas are now a possibility. There are also all kinds of work certifications that might be an option. Be open and flexible in looking at all possibilities.
Develop a plan with loose target dates. As we’ve learned, while it’s important to have goals to shoot for, we also need to remain flexible. Overall, you could set an aspirational goal (i.e., to become a freelance writer) Or it might be more digestible to set goals for when he’s 20 yrs old, 21 years old and so on. Then, break those down further in managing to achieve them.
Discuss realistic possibilities. What if he may not be able to totally support himself ever? Would he ever apply for disability in the future? Walk through the tough questions. Sometimes it is better to discuss those earlier than later. You know your child has those in the back of his/her mind just like you do. These are all painful questions but at some point, they need to be asked and openly discussed.
Never lose “Hope” for a meaningful life. Think about - and discuss - what “meaningful” or “purposeful” means to your child. An unpaid internship would even allow your child to learn about himself/herself. My son is now looking forward to the possibility of earning his own money, even if it is minimal. We’ve never lost hope or rather I would not let my son lose hope for better things to come. That was the other thing my parents had taught me - “Never give up hope.”
I want to say how we (and he) recognize how he’s very lucky that he can continue to live at home for now and not have to entirely support himself. Not everyone has that luxury.
However, what does the future hold? If he can’t support himself, how will he live? This puts so much pressure on us as parents. Will we be able to leave money when we pass? Will it be enough to supplement the money he is able to earn? These are questions I ask myself (way too) often.
Life just does not always allow us to complete the picture we have set for ourselves and it is often a painful reality. The most important thing I want for my son right now is to feel good about himself in whatever he is able to accomplish and to have meaning in his life.
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.