Transition starts now….



I am a procrastinator by nature.  Despite years of effort to change that, and despite those many, many times I barely skated in just before a deadline (or even just after) – I still often wait until the 11th hour.  My ability to underestimate the amount of time it will take to accomplish something is crazy, as is my ability to do some of my best work under the pressure of a soon to sound finish alarm.

I guess it should not be a surprise to me then, that I find myself finally truly focusing on “Transition” for my daughter now… now that she is 17 and due to leave for college in less than a year.  Except, I think this process is probably something you cannot really cram for….and I find myself trying to execute in a short period of time what I should have been working on for years. Some of my failures in this arena are becoming glaringly clear as I try to get my little bird ready, and strong enough to fly.

In all those early years, when we would be at the JA Conference, or at camp, or an education day – and I heard “Transition” – I imagined a very specific and finite period of time that would begin neatly at the age of 18 or so…and be wrapped up tidily by 20.  It seemed so remote and distant, I just put it out of my mind and worries. I was wrong.  My friend Liz told me this years ago.  She manages the kids program at the Annual Advocacy Summit – where they are teaching kids how to use their own voices on Capitol Hill – and she told me that I needed to look for every opportunity to empower my daughter to be in charge for herself. Unfortunately, I didn’t embrace the lesson as I should have.

Transition: noun tran·si·tion \tran(t)-ˈsi-shən, tran-ˈzi-, chiefly British tran(t)-ˈsi-zhən\:   a movement, development, or evolution from one form, stage, or style to another

Transition, is a mindset and practice- it is a slow evolution..and it starts NOW.  I mean for you and your kids.  Whether they are 18 months, or 3 years or 13 or 18. Transition is not only some specific period of time, at some adult age, when children magically maneuver from a pediatric rheumatologist to an adult rheumatologist and suddenly know how be a self-advocating, self-caretaking adult. Well,  essentially – when you hear the phrase – that it was it is intended to mean. It is that too…and there are resources that are specifically designed to help you with all of those daunting tasks. But let me share something with you….

Now that my daughter drives – and now that the schedules of my two sons are getting busier, I have been encouraging Caitlin to make her own appointments for the orthodontist (she is almost done with her Invisalign braces) and for the dermatologist. These are never initial visits, but follow-up visits – and it is approved by the practices for her to attend without me. When she attended the first visit without me, I got a panicked text about a copay. “They want me to pay??” she asked incredulously.  Ummmmmm. Hello? Are you not the same child who has been by my side at virtually HUNDREDS of medical appointments over the last 14 years?  And this process has escaped your attention??

Yes, dear.  You must pay the copay.

Alas, it is the eleventh hour.  In six months, my daughter will be 18… and to have ANY access at all to her medical records or to speak with her doctors, I will have to have written permission…and even then, I will not always be granted the privilege.  All I can see at this point, is my failure – and all of the missed opportunities to prepare her for what is to come.

This is not something unique to me, or to my generation of parents – this goal to take care of things for our kids to a fault.  This is so very, very common. This summer, I read a book called How To Raise and Adult which very thoroughly examined the challenges that this generation of children is facing because they have been overparented.  In an effort to protect our kids from the things we fear (which are statistically not any more prevalent but just seem so, because of media saturation) and with the goals of helping our kids succeed in a world that is becoming crazily competitive yet is also burgeoning an “everybody-is-a-winner” philosophy – we, and I include myself, have helicoptered away some of our children’s ability to self sustain.  Kids are less likely to go outside and play, and more likely to attend a parent monitored playdate with organized crafts, snacks and activities.  Kids have less chores, less responsibilities and more Cantonese lessons and business plans for their own non-profits.  Parents are completing class projects, rewriting college application essays and…gulp….attending job interviews with their children (Let me just jump in and say that I believe I am only guilty of about 51% of the examples given in the book! haha).  The book carefully traces the changes in the world over the last 40 years and makes a great case for how, in the recoil back from the latch-key days of my childhood- we have corrected fairly far in the other direction.

Naturally, if it’s quite common to do a little too much for our kids in an effort to give them the best life possible – it would stand that we, as parents of kids with chronic illness, are probably doing even more.  Because it takes our effort so often to just make things fair – to just give them even ground with their peers.  It takes working with the doctor team, sometimes arguing with them – working with the schools, counselors, nurses, teachers – working with their friends – arguing with insurance – , taking sports coaches aside, educating a seemingly endless throng of people who don’t seem to have the slightest understanding of what your child deals with.

Believe me – I am not saying that we should stop that.  And I’m not in any way saying that the tough decisions regarding treatment plans or course should be abdicated to children. All I am saying is that there is room in the discussion for your child’s voice – no matter how young. Because for our kids, becoming an adult will be more complicated and life management will require a greater skill set.  It’s one thing to start understanding how to manage finances, live on your own, cook a meal, change the oil on your car – all those things that young adults have to learn as they start to stand on their own two feet.  It’s another when you add in the needs of caring for your chronically ill self – medications, insurance, doctors, proper nutrition, rest and exercise/ physical therapy, emotional health….all at the same time that you are learning to juggle the responsibilities of just plain old adulthood.  With stress being a trigger for flares, it’s no wonder that so many JA kids suffer huge health setbacks when they start college. The way I see it – every skill I can help Caitlin master now gives her a slightly better chance of maintaining in her future.

So, my advice to you dear friends – is to start now.  No matter how old your child is, there are age appropriate ways to teach them to advocate for their own care, to be aware of their own details.  Encourage them to speak for themselves at the rheum appt – I know that too often, I did the talking.  Not only because I have a big mouth, but because I had the memory of all the details.  But even with young ones, you can spend some time preparing for the visit – and maybe even bring a drawing where your child has colored over the parts that hurt.  Older kids can track symptoms on an app. If you have teens, connect them with information on how they can take charge for themselves. And here are some articles on how we can help our kids prepare for being capable adults and even a website dedicated to helping with the process.

Encourage them to advocate for themselves – to teachers, to coaches, to friends and family. Imagine what you want life to be like for your young adult of the future. Of course you want it cured by then!! Me too!  But just in case it isn’t – or even if it is! –

How much do you hope that your future young adult will be independent, capable
and strong?  And what can you do to get them there?

This entry was posted in Awareness / Advocacy, College, Dealing with the public, Education, Overcoming obstacles, Transition, Uncategorized. Bookmark the permalink.

2 Responses to Transition starts now….

  1. Sarah says:

    I’m right there with you as mine turned 18 last month. Its a mind boggling process and add developmental disabilities and you can imagine. I don’t want to hold his hand and drag him through this and I don’t want to just turn him lose. This transition thing is rough!

  2. Stefanie says:

    Hello! As a now almost 30 year old who has grown up with JRA, I understand how scary this transition process is! The transition out of college into the workforce was almost harder for me than the college transition. However, by having JRA and being forced to be independent with my medical care and advocate for myself, I not only learned how to be a mature, responsible young adult, but I also learned valuable skills to help me in my career. Learning how to manage talking to health insurance companies and being responsible for your own health care will help your daughter in many ways to come! Best of luck!

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