Every Sick or Disabled Kid (& College Student) Needs Accommodations

If your child has a chronic illness like ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), long-COVID, fibromyalgia, POTS, Lyme disease, or Ehlers-Danlos Syndrome (EDS), you already know how challenging school can be. But did you know that your child may qualify for legal accommodations? In the U.S, this means a 504 Plan or an IEP (Individualized Education Program). Other countries have their own names for accommodation plans, but whatever they're called, educational support plans are critical tools for helping students with chronic illnesses and disabilities succeed in school. Your child has legal rights to an equal education, no matter what disabilities they are dealing with. 

No matter if your chronically ill child is in Kindergarten, high school, or at a university, they need an accommodations plan for school. Whether you’re just beginning this journey or have been fighting for accommodations for years, the links in this post will give you a solid foundation—plus practical tips, resources, and hard-won advice from a parent who’s been there. I've also incorporated information from other parents in the support groups I started.

All of these posts were updated in 2021 and again this week:

• School Accommodations for Kids with ME/CFS and Related Illnesses - all about the U.S. system, the difference between 504 plans and IEPs, plus tips on finding an Educational Advocate, educating school staff (no matter where you live), and more.
  
• Example School Accommodations for Kids with ME/CFS - lists of real-life accommodations my kids (and others) have gotten in school--schools can do a lot more than they think they can!
• Talking to School Personnel about ME/CFS - based on advice to our son on how to explain ME/CFS to his professors in college (but applicable to younger grades, too)
• How Our Son Went from Couchbound to College - just as important as accommodating your child's current needs is improving their condition so they can manage a more normal school experience! This was a summary of what we think helped our son, who missed 90 days of his senior year in high school, start college on time a few months later.
• Effective Treatments for ME/CFS - My full summary of all the treatments that have helped us over the years. We both now lead fairly active, semi-normal lives.

Please share this information widely, with any parents who might need it.

 

Does your child have an accommodation plan?

 

What accommodations have helped? 

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram. 

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Pacing & Management Guides for ME/CFS and Long-COVID

#MEAction is a great advocacy organization for ME/CFS and Long-COVID that offers a wide range of support and services for patients.

One of their recent projects was developing Pacing and Management Guides for ME/CFS and Long-COVID, with input from patients and medical experts. They have published two guides that are perfect for sharing with doctors and other medical professionals, physical therapists, and schools:

Pacing and Management Guide for ME/CFS and Long-COVID (for all patients)

Pacing and Management Guide for Pediatric ME/CFS and Long-COVID

Both guides provide a medical overview of what ME/CFS and Long-COVID are, a detailed explanation of post-exertional malaise (PEM) and how it limits patients, why exercise and Graded Exercise Therapy (GET) are harmful, tips on pacing, and resources. The pediatric guide would have been SO helpful in thr many battles we fought with our sons' schools to get them appropriate accomodations.

So, check these out, print them, and share them with any medical professionals (or school personnel) you or your child interact with.

Are these guides something that you will find helpful?

How could you use something like this?

Throwback Thursday: School Accommodations for ME/CFS

The following posts about school accommodations are written for kids/teens/young adults with ME/CFS, but they are equally relevant to kids with fibromylagia, Lyme and other tick infections, EDS, POTS, and many other chronic illnesses, especially those that are poorly understood by or unfamiliar to most school staff. Also, these posts reference the U.S. system of 504 Plans and IEPs, but much of the information on types of accommodations and information to help educate school staff is relevant anywhere in the world. These posts mostly cover elementary, middle, and high school (primary and secondary schools), but there is some information on college included, too.

I first published several posts on school accommodations back in 2012, so an update was long overdue! A few people had mentioned that some of the links on those old posts were no longer working, and this is certainly information that parents of sick kids still need today. So, I've completely updated them! 

These are the posts that you might find helpful in getting appropriate school accommodations for your child, teen or young adult:

• School Accommodations for Kids with ME/CFS and Related Illnesses - all about the U.S. system, plus tips on finding an Educational Advocate, educating school staff, and more.
  
• Example School Accommodations for Kids with ME/CFS - lists of real-life accommodations my kids (and others) have gotten in school--schools can do a lot more than they think they can!
• Talking to School Personnel about ME/CFS - based on advice to our son on how to explain ME/CFS to his professors in college (but applicable to younger grades, too)
• How Our Son Went from Couchbound to College - just as important as accommodating your child's current needs is improving their condition so they can manage a more normal school experience! This was a summary of what we think helped our son, who missed 90 days of his senior year in high school, start college on time a few months later.
• Effective Treatments for ME/CFS - My full summary of all the treatments that have helped us over the years. We both now lead fairly active, semi-normal lives.

I hope you find this updated information helpful!

I'd love to hear from you and hear about your experiences. You can click on "Post a Comment" below or connect with me on Twitter or on my Facebook page for this blog. There are wonderful, supportive communities in both places!

First ME/CFS Pediatric Population Study Published

Big news! A long overdue first-ever population study of kids and ME/CFS was just published in the journal Child and Youth Care Forum. It's full title is The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample and you can read the abstract here (or pay for the full text). There is also an excellent, brief summary of the study's findings in Science Daily.

A population study scientifically estimates what percentage of the population has a certain disease, in this case ME/CFS in kids. This is big news because when the CDC conducted two previous population studies on ME/CFS (the second one estimating about 2 million adults in the U.S. have the disease), they left out kids entirely; both of their studies focused only on those 18 and older. Those of us with kids with ME/CFS have long seen the desperate need for a population study of kids, to help educate the medical profession (and the public) that this devastating disease does affect children and teens.

 A few highlights from the findings of the study:

• Researchers, led by longtime ME/CFS researcher and advocate Leonard Jason, screened 10,000 children and teens (ages 5-17)  in the Chicago area (population studies like this start with phone surveys that lead to more intensive medical work-ups for those who meet certain criteria).
• 0.75% of the children in the study had ME/CFS-- that's more than a half million children in the U.S.
• Startlingly (though not surprising to patients!), 95% of the children identified as having ME/CFS had not been diagnosed. Only 5% had been accurately diagnosed.
• African-American and  Latinx kids were slightly more likely to have ME/CFS and even less likely than Caucasian children to have been diagnosed.

You can read a full summary of the study's results in Science Daily. Be sure to share this article with your own doctors, school nurses, teachers and administrators!

Weekly Inspiration: ProHealth - Coming of Age with Chronic Illness

Happy weekend! Summer has been so incredibly busy around here, with my adult sons in and out, all kinds of crises, and some travel (though very little actual vacation time!). I hope to post more on the blog in the fall.

Today, though, for my Weekly Inspiration post, I wanted to share my latest article, published this week on the ProHealth website: Coming of Age with Chronic Illness. You can read the full article at that link.

This is a topic near and dear to my heart, as my oldest son - who's had ME/CFS for about 14 years and 3 tick infections for the past 11 years - just graduated from college. He was mostly couch-bound during his last two years of high school and worked hard for six years to get an engineering degree. Besides our own experiences, for this article I also reached out to the wonderful group I run on Facebook for Parents of Kids & Teens (and Young Adults) with ME/CFS and Related Illnesses. Everyone agreed that maturing and becoming an adult with illnesses that are so limiting carries with it huge challenges, and the parents in the group came up with some great ideas and tips for helping your teen and young adult kids. I wish I'd read their advice about 10 years ago!

If you have sick kids, of any age, you might also be interested in an earlier article I wrote, When Your Kids Are Chronically Ill, which includes coping strategies for both sick kids and their parents.

And if your kids are healthy, but you are the one who is chronically ill, then check out The Challenges of Being a Sick Parent.

Finally, if you are wondering HOW my son managed to get through college with ME/CFS and 3 tick infections, it was due to our relentless (and somewhat successful) search for treatments that would help. He and I have both improved significantly and can now live fairly active, semi-normal lives again. This post on Effective Treatments for ME/CFS summarizes the treatments that have helped us the most, with plenty of links to more information.

I hope you are enjoying a lovely weekend, and that this information helps to inspire you and your family to improve your lives with chronic illness.

P.S. If you want to join the Facebook group, Parents of Kids & Teens (and Young Adults) with ME/CFS and Related Illnesses, please answer the questions that pop up after you click "Join" - that is the only way we have now to screen potential members (the group is for parents of sick kids (of all ages) only). We also have a separate group for teens and young adults who are sick, Teens with ME/CFS and Related Illnesses.

Weekly Inspiration: My Son

You may have been wondering where I've been for the past couple of weeks, and why I haven't been posting much here (or on Twitter or Facebook)...we have been getting ready for a huge event and the subject of today's Weekly Inspiration...

Our son graduated yesterday from college with a Bachelor of Science degree in Environmental Engineering!! This would be a wonderful accomplishment for any young person, but he has had ME/CFS for almost 14 years (since age 10) and also has Lyme disease plus two other tick infections. He barely remembers a life before chronic illness, and the combination of these diseases has been devastating and, at times, incapacitating.

For the past six years, he has worked harder than anyone else had to in order to achieve this incredible milestone. He showed amazing persistence, taking 3 classes each semester (that's all he could manage), plus often taking a class during summer and winter sessions, so that some years, he had almost no time off all year. He remained committed and determined, even after most of his friends graduated two years ago. He hit some major roadblocks along the way: the year he caught the flu in November and was completely incapacitated for 3 months; the many times he crashed so badly that he had to come home for 2-4 weeks and then catch up on all the schoolwork he'd missed; and just last week, days before graduation, a professor told him he failed him for missing too many classes (despite his accommodation plan), which resulted in an incredibly stressful lead-up to graduation with visits to Disability and the Dean of Students (now you know why I've been too busy to blog!). The result of that fiasco was that he still needs to take one last elective this summer...but he did walk in the graduation ceremonies this weekend.

I am in awe of what he has done. I think back to my own college days - the most carefree days of my life! I was perfectly healthy (and took that for granted, of course), partied wildly on the weekends, and worked hard all week, graduating easily in four years, ready to start my adult life. I manage support groups, both online and locally, for families whose "kids" have ME/CFS and related conditions, so I personally know or know of thousands of young people struggling with these diseases, and I have huge admiration for all of them. I was 37 years old when I first got sick, and that was immensely challenging. I can't even imagine what's it like for all these young people, including my son, to grow up like this. Of course, some of them are too sick to even try school, but many of them, like my son, struggle every day, week, and month to do what other kids do effortlessly. It truly is awe-inspiring.

So, here's to my son, my inspiration, my heart, for this incredible accomplishment. His commencement speaker said something to the effect of "the important thing in life is not what you achieve but what obstacles you overcome to get there." Our son overcame one obstacle after another to achieve this goal that other young people might take for granted, and we are so proud of him!

I hope that you are inspired by his journey, too.

NOTE: If you are wondering how someone with all those diseases was able to manage college and graduate, check out my post on Effective Treatments for ME/CFS - it outlines the treatments that have worked the best for both of us over the years and those that have allowed us both to become more active and live semi-normal lives. If you have a teen yourself, you might also be interested in the post, How My Son Went from Couchbound to College, about the treatments that helped him that summer before college, when we were desperate to find what would work to allow him to start college on time with his friends (which he did), after he'd missed 90 days of high school his senior year.

Scholarship for Young Person with ME/CFS in NJ

Copyright: ktsdesign / 123RF Stock Photo

The wonderful NJ ME/CFS Association has an annual scholarship for a young person with ME/CFS (who lives in NJ) - and the award has been increased for 2018! 

Here are the scholarship details on their website.

This is a great opportunity!

New ProHealth Article: Keep Learning, Even from Bed!

I had so much fun researching and writing my September article for ProHealth's Inspiration Corner! It's called Keep Learning, Even from Bed, and it includes a looong list of ways to learn, expand your mind, earn a degree, or even just ward off boredom while you're stuck at home sick.

Once I started digging into the topic, I found some amazing websites that offer both education and entertainment - everything from taking college courses to learning new skills to visiting museums, all from the comfort of your couch or bed! There are some great options here for people who had to leave school because of illness but also plenty to keep the rest of us busy and having fun, too!

Check out the article - it is filled with links to all these great websites. I was so inspired, I had trouble finishing the article and not just watching smart, fun stuff all day!

Weekly Inspiration 1/17: Online Learning Communities

Whew - a very busy week, with my son's 18 birthday, which made for one very hectic day and then needing time to recover! I have several blog posts planned, and I hope to have the time/energy to write some of them this coming week.

In the meantime, I wanted to share this fun, entertaining, and interesting TED Talk with you. A parent in our online Parents' group shared it, as inspiration for our sick kids who can't attend school, but I think it will be of interest to all of us with chronic illness (and anyone who is healthy, too, for that matter).

The speaker is renowned YA author John Green, who wrote such best-sellers as The Fault in Our Stars and Looking for Alaska (link is to my review) and whose books are being adapted into great movies, which is making him even more of a celebrity (I love when authors become celebrities).

In this TED talk, Green is talking about how he missed the interactive learning environment in school once he graduated and became an "adult." He says that this hole has now been filled with interactive learning communities online, and he provides several examples of hugely popular video series on YouTube (including his own, called Crash Course) that are educational, entertaining, and encourage their viewers to learn and discuss the content together. Many of these educational series - on physics, higher math, history, and more - have millions of viewers. It's all pretty fascinating. I'd heard about online classes and college courses you can participate in online, but this was new to me.

Here's Green's talk - and if you've read his books, you know to expect a good sense of humor:



While this is very, very useful for young people who are too sick to attend school (I wish I'd known about some of these more fun video series when my own son was struggling to get through high school from the couch), they are also a great source of education and entertainment for adults. Did you have to leave school early due to illness? Would you love to take classes at a local college but can't manage it? Or do you, like John Green, simply miss the intellectual stimulation of learning and discussing things together with other people? In any case, check out John's talk and some of his suggestions on YouTube, which are especially wonderful for those who are housebound and missing out on social interaction.

Here are some of John's examples of educational (and entertaining) video series available on YouTube:

• Smarter Everyday, featuring Destin Sandlin
• Crash Course, John Green's own educational video series produced with his brother (they also produce the very popular & entertaining video series NerdFighters aka Vlog Brothers)
• Minute Physics - quick explanations of everyday physics examples
• Doodling in Math Class - short, fun explanations of complex mathematical concepts in simple terms, through notebook doodles

How about you? Do you have some favorite websites or video series online for learning?

Young People, ME/CFS, and Limits

My own college Halloween (I'm Barnie, the short one in the middle!)

I led a healthy, active, normal life until I got ME/CFS at age 37, thirteen years ago. My oldest son, on the other hand, got ME/CFS two years after I did, when he was just 10 years old. That's a very young age to begin a life of chronic illness. He is 21 years old now, and he and I are both struggling with his limits.

After 13 years of illness, I am accustomed to this life defined by restrictions and limitations. I can't drink alcohol; can't eat diary, sugar, or yeast; can't stay up late; can't exercise the way I want to...the list goes on and on. I am resigned to this life ruled by limits because I know that if I stay within those limits - and take my medications and supplements at the right times every day - then I can function fairly well most of the time, especially for someone with ME/CFS. My son, though, struggles mightily with this life of limits.

After eleven years with ME/CFS (and the past nine with Lyme disease and two other tick infections, too), he is well aware that he feels better when he gets enough rest, sticks to a routine, and doesn't over-exert. Knowing that and doing it are two different things, though. I get frustrated when he does things that we both know put him at risk for a serious crash.

For instance, when he and his friends drove to Florida for spring break last year, he volunteered - volunteered! - to drive the middle-of-the-night shift, ignoring the fact that he needs a solid 10 hours of sleep a night to function the next day. I couldn't believe it when he told us that!

Last weekend, we were making our annual trip to the local pumpkin farm on Sunday morning for pumpkins and homemade donuts, and he wanted to join us. We planned to leave by 11 am (if you get there too late, they run out of donuts!), so he decided to spend the night at home so he could get up in time to go with us. He came home from work Saturday night but realized he'd forgotten something at his apartment at school, so he drove back there at about 11 pm. Next thing we knew, it was 3 am and we heard the garage door going down. The next morning (when he could barely drag himself out of bed and into the car), we said, "Why on earth did you stay out until 3 am?" He explained that when he stopped back at his apartment, a friend convinced him to go to a Halloween party, so he pulled together a quick costume and went!

Today, a similar story. He slept here last night because one of our cars is in the repair shop. He was wiped out and didn't get up until 1 pm today. As we were eating lunch (breakfast for him), I said, "Now, I know you have two Halloween parties to go to - one tonight and one tomorrow - so pace yourself, OK?" He grinned sheepishly and admitted there were actually seven Halloween parties going on this weekend! I advised him to just choose the ones that were most important to him, and he just said, "We'll see." Yeah, right, I know how this goes!

As a mother who has watched him suffer from this illness for eleven years, this drives me crazy!!

On the other hand, if I think about it for a moment, I really can't blame him. He is 21 years old and in college! When I was his age....well, let's just say I was more than a bit wild. I was a regular party girl and quite reckless. I can't imagine - in my wildest dreams - being that age and having to live within all these restrictions and limits. Unthinkable.

His is a time of life that is all about freedom, fun, and independence. A time when you have few real responsibilities, and life is all about friends, parties, and having a good time (oh, yeah, and school, too). It hurts my heart to think that he can't just be wild and free like I was, that he can't just do whatever he wants and make the most of his fleeting freedom.

So, although I worry about him constantly and often wish he'd be more careful, another part of me is rooting him on, thrilled that he is well enough (relatively speaking) to be able to go to college and live on his own and spend time with his friends. I remember all too well those dark days when he was in high school and mostly confined to the couch, missing 90 days of school his senior year. I want him to enjoy this time of life and go to the parties and laugh with his friends and stay up until 3 am...I just wish all that didn't involve such a big risk for him.

I will continue to worry about him, I'm sure, but I am also proud of him for making the best of things, for managing to have fun in spite of all his restrictions and limits, for trying his best to live a "normal" life. In truth, his life is far from normal (though that is hard for others to understand) - he eats a restricted diet (some of the time!), is on a strict regiment of medications and supplements that allow him to keep living his life, and does indeed crash if he does too much - but he is making the best of it and living his life as best he can. Although I may get frustrated with him at times, he is actually my hero.

I would love to hear from other young people (and parents, too!) - how do you find a balance between the limits inherent in this illness and living your life? How do you cope with so many restrictions at a time of life usually defined by freedom?

One Son Recovered?

Things have been crazy around here, with a visit to help my father-in-law sort through his house to get ready to move here and my dad having a 7-hour surgery yesterday as a first step to treating stage 3 melanoma. So, I am pretty exhausted and experiencing lots of stress.

But among all the bad stuff, we've had some good news, too. My 16-year old son has weaned himself off his Florinef (medication for Orthostatic Intolerance - OI) for the first time in 8 years, with no apparent ill effects! We tried the same thing last summer, but his symptoms flared up. So, after 8 years, he is now taking no Florinef, potassium, or salt tablets...and so far, he seems to be doing well. He's been very active - playing soccer, golf, biking, etc. in the summer heat, plus going to PT several times a week - and he's been feeling great.

His CFS has always been mild, and he fits the profile for those with the best chance of recovery (childhood onset, mild symptoms, up and down pattern, abrupt onset).

His symptoms began at age 6 (1st grade), at the same time as his older brother who was 10. Our younger son's symptoms were different, though, than mine or his brother's. His main symptoms were pain-related: chest pain, back pain, headaches, plus in his 6-year old words, "just feeling bad all over." He showed the classic post-exertional crashes and crashes when exposed to a virus but in between those bad periods, he felt fine. We talked privately to his pediatrician about our suspicions (by then his older brother and I were both diagnosed with CFS) but held off on officially diagnosing him - he was so little and still functioning well much of the time that we didn't want to saddle him with the label of being sick.

By spring of 3rd grade, he had missed over 35 days of school, and the principal called us to find out what was going on - at that point, his pediatrician ran all the necessary exclusion tests and officially diagnosed him with CFS. I had discussed his symptoms with Dr. David Bell (pediatric CFS expert, now retired) and Dr. Peter Rowe, pediatric CFS and OI expert at Johns Hopkins. They both thought that most of his symptoms were OI-related and would improve with treatment, so we started him on Florinef (our pediatrician worked with Dr. Rowe by phone, something he is still happy to do to help educate other doctors about CFS and OI in kids) which had helped out older son considerably.

The Florinef worked wonderfully - it cleared up all of his pain symptoms and greatly reduced the post-exertional crashes. On Florinef, he was symptom-free about 95% of the time and could do just about anything he wanted. He would still crash occasionally if he really overdid (we had an "only 1 sleepover in a row" rule!) and a cold might knock him out for a week or so, but otherwise, he has lived a fairly normal life from starting Florinef at the end of 3rd grade through the present.

He typically missed between 12 - 15 days of school each year for those occasional crashes but felt perfectly well the rest of the time. He's been playing soccer since he was 4 years old and has been on his school soccer team since starting high school, as well as a travel team this past year. He has had some injuries that sidelined him (he's hypermobile and prone to soft tissue injuries), but CFS/OI had little to no effect on his athletic life.

This past year, he missed only 3 days of school the entire year! That's a pretty amazing record for our household. And that included time out after a knee surgery. So, when he wanted to try going off Florinef again, we gave him the OK. He tapered off, as you're supposed to, and has now been completely off it for several weeks and is doing very well.

So, is he completely recovered? I don't think that's ever an easy question. He's definitely got Joint Hypermobility Syndrome, and he thinks he still has some mild OI symptoms. He says he sometimes gets dizzy if he stands up too fast or doesn't stay hydrated. But otherwise, he seems quite well. The real test will be starting school in the fall - going to school full-time and playing soccer two hours a day - but so far, so good!

That's your dose of hope for today - some people DO recover and it is possible.

Young People with ME/CFS - the Long Road to Independence

By the time most kids hit 18, they are more than ready to leave home and get out on their own. In many cases, they've been struggling to gain independence for years already, pushing their parents away, copping that infamous eye-rolling attitude, and itching to get away from the rules and structures of mom and dad's house. Even for those kids who can't wait to leave home, college can be a difficult adjustment - learning to take care of yourself, finding out what your limits are, and dealing with the stress of juggling multiple classes, tests, projects, etc.

Now imagine all of those adjustments and struggles while also managing a debilitating chronic illness (plus a few long-term tick-borne infections!). I know that many of you don't have to imagine it - you lived through it or are living through it now. I was perfectly healthy until I got ME/CFS at age 37, so it is hard for me to think of being that sick during my college years (I definitely burnt the candle at both ends!). My own 19-year old son is going through all of this now, and I had a rare chance this morning to cram a little bit of mothering, caring, and advice into our brief time together at a doctor's appointment.

Overall, he is doing quite well in college - beyond our wildest dreams a few years ago! He just started his sophomore (second) year, he lives on campus in a single dorm room, he takes 3 classes each semester, plus an extra one each during the brief winter and summer sessions, and has so far maintained a B average (he was a straight-A student for most of his earlier years, but again, just being there in college feels like a miracle to us).

I met him at a doctor's office this morning (he goes to a college nearby) for a follow-up appointment for an injury that happened a few weeks ago. I could tell the moment I walked in the door to the waiting room that he was not in good shape. He looked exhausted - beyond exhausted in that way that only someone with CFS can truly understand - and seriously brain-fogged (again, it takes a CFSer to recognize that vacant expression!).

He told me that he had pushed WAY beyond his limits yesterday and had an equally difficult day ahead of him today. He woke up at 8 am yesterday to fit in 2 hours of math homework before his first class, took a quiz, went to a second class, then had a 3-hour Chemistry lab! That meant that he and his friends couldn't get started on their group project until almost 9 pm at night. Until he went away to college last year, he rarely stayed up past 9 pm!! He worked on the project until 2 am - classic late-night studies for a normal college student but a superhuman feat of impossibility for a kid with ME/CFS, Lyme disease, plus 2 other tick infections. Today, he has two quizzes scheduled, plus a lot more homework. He was so wiped out that he woke up and came directly to the doctor's office, without having time for breakfast or morning medicines - a real no-no for him.

He sounded totally defeated and kept saying that he had no choice - he HAD to get all of this done. I only had a half hour with him, but I tried my hardest to be supportive and remind him that he does have options. I encouraged him to talk to at least one of his professors about postponing today's quiz. He has an accommodations plan with the college and already spoke to each of his professors about his illness at the start of the semester. It has been hard for him to learn how to speak up for himself and advocate for himself.

He said to me today, "But a college student is supposed to just get everything done and be independent. I don't want to ask for special treatment and have him think I'm not capable." I gently reminded him that he is dealing with several very serious, debilitating illnesses, that his professors won't understand how it all affects him if he doesn't explain, that his accommodations are not special treatment but just a way to try to level the playing field, and that the Disability office is behind him. I encouraged him to explain to his professors how a late night studying or too many quizzes in one day affect him, how his brain just gets overloaded and stops working. He finally agreed to talk to one of the professors today about possibly taking the quiz tomorrow, so he can rest first.

Then I had him follow me to a nearby coffee shop, where I bought him a blueberry scone (his favorite!) so he at least had something in his stomach for his first class. I think I convinced him to ease up on himself and open up more with his professors. I hope the rest of the day will be easier for him. I'm so glad I happened to be able to see him this morning, right when he needed some support, though I wish I could have done more. It was hard to say good-bye and drive away.

This period of growing up and becoming more independent isn't just difficult for him; it's tough for us as parents, too. Like all parents, we hate to see our child suffer and want to protect him and keep him safe. He is only 20 minutes away at college and comes home every Sunday so I can refill his 6 overloaded, always-changing medicine reminder boxes. In between those brief visits, we try very hard not to interfere and to let him live his own life. We want him to experience all that college has to offer, including that growth toward independence. But it's a hard balance to maintain when your child has been ill for so long, and you are used to doing so much for him.

Until about a year ago when he started college, he was severely incapacitated for much of his junior and senior years of high school, due to starting his treatments for Lyme and the other two tick infections. We had to do almost everything for him, not because we were overprotective parents but because he was literally incapable of getting up off the couch much of the time (see How My Son Went from Couchbound to College for more info). We acted as his advocates, with both medical personnel and school administrators and teachers, fighting for his rights and refusing to take no for an answer. He was so sick senior year that he barely managed to graduate on time (with the help of home tutoring, exemption from all 4th quarter work and from most final exams, and working through the summer), so he had no extra energy for college or scholarship applications. I did all of that for him, except the essays, because we had no other choice and he so badly wanted to start college on time. And somehow, he did!

It's a hard transition for us, to go from doing so much for him, taking care of him, and advocating for him, to suddenly not even knowing what is going on in his day-to-day life. We try let him do things for himself and don't text him unless we need something specifically. I think he is doing very well overall - he loves college, loves being on his own, loves all the time with his friends. On days like today, however, it is hard not to just bring him back home and take care of him until he feels better!

It is a long and bumpy road to independence for both him and us, but we are grateful that he is on that road at all. Intellectually, I know that he will get past this tough period this week and be fine, but emotionally, I want to wrap him in my arms and take care of him. Old habits are hard to break. I know that all parents go through this struggle to some extent, but it is just so much more complicated for parents of kids who are ill or have special needs.

I am sitting on my hands so I can't text him...

How My Son Went From Couchbound to College

I guess that post title is a bit misleading because the honest truth is that we really don't know exactly what caused such a miraculous improvement in our son that allowed him to start college with his peers last August. Desperate for some way to help him and allow him to start college on time, after 18 months of near-total incapacitation, we tried dozens of new treatments that summer, so we aren't 100% sure which of them is really responsible for his dramatic improvement ... but we have some educated guesses.

A quick bit of background for those who are new to my blog: My son's history with both ME/CFS and Lyme disease is a long and complicated one. He first got Lyme in 3rd grade but seemed to recover fully from that and was very healthy in 4th grade. In 5th grade, he suddenly became severely ill and was diagnosed with ME/CFS (which I'd had for 2 years). He missed 60 days of school in 5th grade and only attended part-time in 6th grade, with home tutoring. Treatment with Florinef for Orthostatic Intolerance dramatically improved his condition at the end of 6th grade, and he went back to school full-time, re-joined the band, and was even able to play soccer again.

At the end of 7th grade, he got Lyme again. This time, he did not return to his normal baseline after treatment. He remained more fatigued, though treating with more doxycycline didn't seem to have any effect. Over the next 4 years, his condition worsened very gradually. He was still attending school but missed 25-35 days a year, with ever-worsening fatigue and cognitive dysfunction (and all the other typical ME/CFS symptoms). Finally, some strange symptoms alerted to the fact that he had another tick-borne infection, bartonella. A Lyme specialist diagnosed him with Lyme, bartonella, and babesia (all tick infections); our best guess is that he had these other infections all along but they were never tested for or treated back in 7th grade.

Treating tick infections that have been present for that long is a tricky business, and most people get worse (due to a herx reaction) before they get better. Our son got even worse than most after so long, with an 18-month long severe herx reaction that left him mostly incapacitated. He spent most of his junior and senior years of high school on our couch, struggling to catch up on missed work, but with the help of home tutoring (and many fierce battles with the school for accommodations), he managed to graduate on time. Although he'd had some gradual improvement, he still had a difficult summer (and only finished his high school work the day before college started!), but at the end of August, he improved dramatically.

Yeah, that was the brief version! So what changed last summer that allowed him to start college on time and even live on campus? Here are the things we tried and our best guesses as to their effectiveness:

Beta Blockers - We have no doubt that starting him on low-dose, extended-release beta blockers at the end of August played the greatest role in getting him back on his feet (quite literally). He felt an immediate improvement and is now able to walk all over campus without crashing the next day and has even joined the Ultimate Frisbee team. He still takes Florinef for OI (we tried reducing the dose and found he still needed it), but adding the beta blockers resulted in a significant improvement.

Increase Imunovir/inosine - He started inosine last spring (something I have had good success with, too), but it was last summer that I began very slowly increasing his dose. He now takes 4 pills a day - which is still lower than what is recommended - and I think inosine has helped to normalize his immune system somewhat so that he can better fight those infections. I've also noticed that virally-induced crashes have become quite rare for him (and for me) since inosine. Note that we started with prescription Imunovir (not available in the U.S.) and later switched to generic inosine, which worked the same for us (but is far cheaper), and that the dosing is quite complicated and must constantly change. It's all explained in that post on Imunovir/inosine.

New Supplements - This one is more of a guess, but we changed many of his supplements last summer, and I do think that has helped. We consulted with a biochemist/registered dietician who advised us on supplements based on his history, symptoms, genetics, and circumstances. I think that the most significant effect probably came from those supplements aimed at improving his methylation process (something I had started on my own before) to allow his body to better process both the medications he was taking for tick infections, as well as the toxins (i.e. dead bugs) released by the treatments. I think this is a very individual thing--choosing appropriate supplements based on symptoms and history--and we relied on the advice of the dietician/biochemist. In some cases, he was already taking certain supplements (like a multi-vitamin, alpha lipoic acid, and others), but the biochemist recommended a specific brand that she felt would be better absorbed and/or more effective. All of this has been very expensive, and we are not entirely sure which have helped and which are a waste of money. We've been afraid to change anything since he's been doing so well!

Eliminate/Reduce Artificial Dyes -  I really have no idea if or how much this helped. The dietician/biochemist said that artificial coloring can be toxic to many people, especially those with chronic illness. He was ingesting a lot of it because he drank 2-3 liters of Gatorade a day. The salt and fluids helped tremendously with his OI, but she was concerned that the artificial dyes were detrimental. We switched from Gatorade to Vitalyte, a more natural electrolyte drink with only natural colors (and not much of that). I have no idea if it helped or not, but the Vitalyte is actually less expensive than Gatorade anyway, and both of our boys like it. I think it has a lot less sugar in it, too. Later, when we realized that sugar was a big problem for him due to yeast overgrowth, we switched again to GU Brew tablets.

Trial of Gluten-Free/Dairy-Free Diet - Again, I have no idea if this helped or not. The dietician/biochemist suggested he try a restricted diet. She did not suspect food intolerances but said that people with ME/CFS just have trouble digesting gluten and casein (a protein in dairy), and that these substances can increase fatigue and other symptoms because they block one of the methylation pathways in the body. Our son was NOT happy about such a restricted diet, but he was a good sport and went along with it. I joined in for moral support, and he and I ate strictly gluten-free and dairy-free (I was already dairy-free) for 7 weeks. His improvements began several weeks after starting the restricted diet and he didn't notice any improvements in GI issues, so after 7 weeks, he added dairy back in first and then added gluten back a couple of weeks later. Interestingly, he did notice some GI issues worsen when he added dairy back, so on his own, he decided to limit low-fat dairy (it is probably a lactose intolerance since higher-fat dairy products like ice cream and full-fat cheese don't bother him much). That was 6 months ago, and he is still doing well, so I don't think the gluten and casein were a major issue for him...BUT it is possible that eliminating them for a while helped his body to recover and improved his ability to process toxins by temporarily removing that methylation block. Who knows? Note that we later both adopted a modified Paleo diet, which does help.

I think those were the major changes we made. Once he began to improve, there was a cascade of positive effects that built on each other. As a result of his improvement, he was finally able to gradually increase his dose of antibiotics to treat Lyme to a full dose (for a long time, he couldn't tolerate more than 1 pill every 3 days!), so we are finally seeing some progress in his Lyme/bartonella/babesia treatment. I think this is a critical point to understand: when underlying infections are present (Lyme, other tick infections or reactivated viruses like CMV, enteroviruses, EBV, HHV-6), as they are in many people with ME/CFS, you can't improve until you treat those infections, and the immune dysfunction makes it worse. It is a vicious cycle, and you have to address it all  - treat immune dysfunction and underlying infections.

The beta blockers allowed him to exercise again, and he gradually built his stamina up as a result--this is something I have seen, too. Being able to exercise without crashing allows you to build muscle and improve cardiovascular functioning, which in turn helps to improve your overall physical condition and well-being, allowing you to do even more. He slimmed WAY down as a result and lost the bloated look he'd had. He now walks all over campus every day, plays Ultimate Frisbee with his friends (he's not yet in good enough condition to play in their tournaments, but he practices with the team and is gradually building stamina), and is taking 3 classes each semester. He lives on campus in a single room and stays up late with his friends like any other college kid (though he can go to bed early when he needs to). To our astonishment, he missed only 3 days of classes fall semester and has so far missed only 1 day in the spring semester (the result of 6 straight hours of snowboarding!).

It all still feels like a miracle to us, and we are grateful every single day. I wanted to share with you not only the specifics of what we think helped but also the hope. I don't know whether he (or I) will ever be 100% well, but improvement is possible. He is so happy to be living among his friends, going to school, and resuming a somewhat normal-ish life.

Talking to School Personnel About ME/CFS

NOTE: Refer to my earlier posts, School Accommodation Plans for Kids with ME/CFS and Related Illnesses and Example School Accommodations for more information. 

My son was home from college this week with his first bad crash of the school year. Fortunately, he started to feel bad on the weekend, so he ended up missing only 3 days' of classes and a few important assignments. While he was home, I was coaching him on how to manage his absence, how to inform his professors, and what to discuss with them afterward.

Since I seem to have caught his cold and am now the one stuck on the couch, I will just copy the guidelines I wrote for him this week. I just summarized the talking points that we have always used in past 504 meeting for him and his brother. These are specific to his situation but could be easily revised for any child/teen/young adult with ME/CFS or similar illnesses at any level of schooling. Ideally, he would have met with all of his professors before now to cover all of these points; he did talk briefly with each of them at the start of the year, but when he is feeling better, he will meet each of them during their office hours for a more thorough discussion, something along the lines of:
 

Discussion Points for Accommodation Meetings

Introduction and Overview:

• I have had Chronic Fatigue Syndrome (ME/CFS) since I was 10 years old.  It is a serious immune system disorder with genetic roots (both my mother and brother have ME/CFS also).
• I was also recently diagnosed with Lyme disease and 2 other tick infections that I have probably had for about 6 years.  I am being treated for these infections, but the treatment can make you feel worse, especially when the infections have been present for a long time.

What To Expect/How My Illnesses Affects Me

• ME/CFS is unpredictable – sometimes I feel pretty good and can manage like other students; other times I am completely incapacitated and can’t get up off the couch.
• My ME/CFS symptoms include:  low energy, low stamina, needing a lot of rest, flu-like symptoms including achiness and sore throat, cognitive dysfunction aka brain fog/difficulty learning and thinking.

• Lyme disease and the other tick infections make all of my ME/CFS symptoms much worse.  They also cause joint pain, nausea, and other symptoms.
• I always have some symptoms, but most days, I can manage OK as long as I get a lot of sleep and rest whenever I need to.
• However, once in a while, I experience a severe flare-up of symptoms (or “crash”) that completely incapacitates me.  These can be triggered by too much exercise or exertion, stress, or being exposed to a virus (like a cold or flu).  When that happens, there is nothing I can do about it except rest and wait for it to pass.  During these times, my cognitive dysfunction becomes very severe, and I am unable to do any schoolwork.  These crashes can last anywhere from a few days to a few weeks but usually last about a week.
• For math and classes requiring any kind of computation:  Part of my cognitive dysfunction includes dyscalculia, a defined learning disability for mathematical computation (similar to dyslexia for reading).  This causes me to have difficulty with simple computation.  For instance, I might set up a complicated problem correctly but then transpose digits or add 2 + 3 and get 6.  The worse my other symptoms get, the worse the dyscalculia gets.  When I am crashed or flared-up, it becomes severe, making math-related work impossible.
• For classes requiring writing:  When I am crashed or flared-up, it is almost impossible for me to write because my cognitive dysfunction becomes severe.  Translating thoughts into written words is a complex task that I just can’t manage when my symptoms are severe.

What I Need/How You Can Help:

• If I am absent due to illness, it means I am severely ill and unable to do any work, even from home. I will e-mail to let you know of my condition and any outstanding assignments and will let you know when I am well enough to return.
• If I have been absent for more than 1 class, I will need extended deadlines for assignments and extra time to catch up on missed work.  Once I am well enough to return to class, I may still have reduced stamina and be unable to do as much work as I normally do.
• I need extended time for some tests, especially math or writing.  It is even better if I can split longer tests into shorter increments.  My dyscalculia gets worse over time as I work.  It is also helpful if I can use a calculator to help prevent simple computational errors due to dyscalculia.
• If I have been absent due to illness for an extended time (more than a week), I may need to shorten and/or skip certain assignments (with your agreement) in order to catch up, decreasing the volume of work while still ensuring mastery of the subject matter.
• Medical absences should not affect grading.
• If I have been ill near the end of a semester, I may need to take an Incomplete in the class temporarily, to allow me some extra time to finish the work.

Any questions or concerns?
_______________

So, next week, our older son will talk to his professors about these points, and we will (finally) have a 504 meeting with our younger son's high school teachers to discuss these same things.

We usually also print and bring hand-outs for the teachers, nurses, and administrators, like these:

• ME/CFS in Children: Fact Sheet for Educational Professionals (CDC)
• School Nurses Can Improve the Life of Students with ME/CFS 
• The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations
  

 

Do you have any tips or resources for talking to school personnel?

 

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram. 

Movie Monday 10/15

Still struggling a bit here.  Craig finally went back to school today, three weeks after his knee surgery!  I know I said the same thing last Monday, but that was short-lived.  One day on crutches at school, and he was totally wiped out the rest of the week.  He seems more fully himself now and even has a friend over this evening for a school project, so hopefully tomorrow's check-up with his surgeon will bring good news. 

However, now Jamie is home sick!  He seems to have been exposed to one of the many viruses going around at school and is in a bad crash.  The good news is that he went 7 full weeks of college without missing a single class (!)...but now, of course, what we all knew was coming has arrived - the unpredictable crashes of virus season.  He is worried about his classes and deadlines he can't meet, so I am trying to help him learn how to communicate with his professors and explain the effects of CFS.  He talked to each of them at the start of the semester, but that first big crash of the school year is always a challenge.  For now, he's here at home, resting and catching up on all the TV he's missed while away!

Surprisingly, with all this downtime, we haven't watched many movies this week.  Craig was preferring TV shows last week and also had a hankering for some old favorite Halloween movies from Disney Channel (comfort TV!) that I grabbed for him at the library.  We did however watch another old comedy, continuing our streak from last week:

While Ken was out golfing, Craig and I watched Stripes, starring Bill Murray and John Candy.  Craig is a fan of both actors from classics like Planes, Trains and Automobiles and Groundhog Day.  As expected, he loved the silly comedy, though I had forgotten how much nudity was in it!  I think we may have gotten an extended version from the library - I don't remember quite that much nudity in it when I saw it in the theater in the 80's!  Anyway, we enjoyed the laughs.

Ken and I are still enjoying past seasons of The Good Wife and Treme, both excellent shows.  As a family, we are watching Bones, Glee, and Revolution each week.

Have you seen any good movies or TV this week?

(If you are also interested in what we are reading, check out the Monday post on my book blog.  And this week, I also posted about what I was cooking this weekend!)

Update on College Life with CFS

Oh, man...it's been ages since I've posted anything here AGAIN.  Sorry about that.  Even though the kids have been back to school, I have still been overloaded, battling a crash, plus a lot of running around because my younger son, Craig, hurt his knee (again) during the first week of soccer practice - doctor's appointments, MRI's, running medical records all over town, trips back and forth to school, etc.  Plus, my husband has been away for a week so I've had to get up at 6 am every day and do everything on my own.

Anyway, lots of you have been asking how Jamie is doing away at college (thank you for thinking of him!), so I thought I could maybe squeeze in a quick update.  Oops...time to get dinner ready...

OK, now that update...really...

So, Jamie has been in college for two weeks now, and things are going really, really well so far!  He is only taking three classes, and he says that is definitely helping.  He says cognitive functioning has been pretty good - perhaps some of his new supplements are helping (more on that complicated situation in another post).  Three days of the week, he only has one class, at 9 am, so he can rest for the rest of the day.  He has a single room, so he can still go to bed early - I think around 9 pm most nights (definitely NOT the norm for most college students!). 

Cool Gel Mat from Solutions catalog

The heat these first weeks has been a challenge for him because none of the freshman dorms are air-conditioned, and the buildings (and their electric systems) are so out-dated that personal a/c units are not allowed - students can't even have a fridge and microwave both running at the same time!  His dorm room is tiny, with just a small window and little breeze since it opens onto a courtyard.  He said his second week was made more bearable by the Cool Gelmat I ordered for him from Solutions catalog.  And, as of today, the temperature has finally cooled off here!  It's supposed to be highs only in the low 80's this week and lows in the 50's and 60's plus much drier!  That should help him a lot.

The high points?  He says the best things about college are the freedom and being near his friends all the time.  This poor kid has been practically chained to the couch for the past 18 months, mostly housebound and isolated.  Another benefit of going to college here in town (he's 20 minutes away) is that lots and lots of his friends are there, too - kids he's been friends with since preschool in some cases!  Best of all, his two closest friends - best friends since kindergarten - are there with him, each just one dorm building away.  So, he says, he loves being able to hang out with friends every day; even if he's not feeling well, he can spend a little time with friends in between resting, and he eats his meals with his friends every day.

For now, he is coming home at least once a week, on Sundays, so that I can refill his weekly medicine boxes (6 of them completely full!) and give him his B12 shot.  Last weekend, a 3-day holiday weekend here, his grandparents were visiting from out of town and it was incredibly hot and humid, so he slept here four nights in a row and spent a fair amount of time with us, but he still had the energy to drive back and forth to campus on Saturday and Sunday to spend some time with friends, too.  He was badly crashed on Monday and Tuesday (probably too much Frisbee with friends Saturday evening!), but he went back in time for his first class on Tuesday and says he felt better by Thursday morning.  This weekend, he only came home for a few hours today!  Just long enough to eat gluten-free pancakes, do laundry, let me refill his meds and give him his shot, and take a shower in his own private bathroom!

It is great to see him so happy and full of life after this long past year of suffering!!  It really feels like a miracle.  His stamina is still quite low, and we have a long school year ahead.  He says everyone in the dorms is already getting sick, so I sent him back with antibacterial wipes and hand sanitizer today!  Even in his very best years (and we are far from those), he still missed 25-30 days of school, usually in 1-2 week long crashes, so we know that is ahead.  But, he is making a good start and for now, he is happy and enjoying himself and being an almost-normal 18 year old, which is far more than we expected a few months ago!

Jamie (in gray) at home last weekend, enjoying a card game with us and his grandparents.

Quick Update and Good News!

Sorry I haven't been posting much - far too busy this week for even a Movie Monday post - I will try to catch up next week.  This morning I need to bake a gluten-free/dairy-free cake, bake GF brownies, refill our 12 weekly medicine boxes, shower, and pack for a weekend with my extended family.  Yeah, that's all.  So I really do have time for just a quick update - I thought I should at least share some good news...

The college's Disability Office called on Monday to tell Jamie they found him a single room.  It's not ideal - no a/c (in Delaware!), no private bathroom - but it IS a single, on the first floor, in a building a few blocks from where his classes will be.  So, Jamie finally made his decision:  he is going to try living on campus and will take 3 courses this first semester.  It took some convincing to talk him down from 4 courses - hopefully, he will be able to handle three.

So, we are taking the plunge!  Next week, we need to pay tuition, find out how he'll manage a restricted diet in the dining halls, outfit his dorm room, call the Transportation Department about parking, and then, on Saturday, help him move in!

Meanwhile, yesterday was Jamie's 18th birthday!  He is officially an adult now - yikes.  We took him out for a steak dinner (thankfully, his favorite meal is naturally gluten and dairy free) and celebrated with a gluten-free/dairy-free banana cake with "cream cheese" frosting!  Everyone LOVED the cake (I don't think they even noticed the frosting was non-dairy), and Jamie said he will be asking me to make that exact cake for his birthday every year until I am old and senile.

Thanks for all your encouragement and support these very difficult months - we still have a great many challenges ahead, I am sure, but things are definitely looking up.

Movie Tuesday 8/7

Somehow Monday slipped away with no time for a CFS Blog post.

We are all doing a bit better this week - thank you all for the wonderful supportive comments and encouragement last week.  Now that we have faced reality and gotten past the emotional part, we are all feeling more ready to deal with what is coming and make some decisions.  We have a meeting with the Assistant Dean of Engineering this week, and my doctor's office just called to say the Special Housing Request form and handicapped parking form are ready to be picked up.  So, we will get our questions answered about engineering curriculum and part-time (a good sign:  the Dean told me on the phone that he has had other engineering students with CFS and understands their needs!!), file those forms, and then help Jamie to make his decision...whether to live at home and just take a class or two or to try living on campus and take the minimum required classes to be considered full-time.  Either way, it will work out.

So, as you can imagine, we were in need of some good distractions this weekend after our emotional week!  We watched two good movies on DVD:

• While Craig went to the actual theater to see the latest Batman movie with friends, Ken and Jamie and I watched a movie that Jamie's wanted to see for a long time: Gone.  In this heart-pounding thriller (seriously, take your beta blockers before watching this one!), Amanda Seyfried stars as the victim of a kidnapping whom no one believes.  She claims to have escaped from a violent man who held her captive in a hole in a local park, but police never found the hole nor any evidence of the crime.  Now, she comes home from work one day to find her sister missing, and she is convinced that the same guy has come back to seek revenge on her for escaping...but of course, no one takes her seriously.  So, she strikes out on her own to find this dangerous man and rescue her sister.  This is one action-packed movie, filled with chase scenes and high tension that kept us all guessing.  We enjoyed it, but I wouldn't advise watching it right before bedtime!
• Sunday night, we all finally had a chance to watch Sherlock Holmes: A Game of Shadows, the second in the newish series starring Robert Downey Jr. as Holmes and Jude Law as Watson.  Like the first movie, this one was filled with action and suspense, with an intricate and clever plot involving the evil Professor Moriarty.  There is a lot of fighting but also some good laughs to lighten the tension.

We are also continuing to watch episodes of Alphas, Warehouse 13, X-Files, and Castle with the kids, and Ken and I are enjoying season 1 of The Good Wife.

Have you seen any good movies or TV lately?

(If you are also interested in what we are reading this week, check out the Monday post at my book blog.)

Grieving Losses and Moving On…Again

Yesterday was an emotional rollercoaster for our family.  On second thought, that’s not an accurate analogy because there were no ups, just downs.  We finally had our much-anticipated meeting with the Office of Disability at the college our son hopes to attend this fall, and it was a hard dose of reality.

As you may know, our son, 17, has had a really horrible year.  On top of the ME/CFS he has had since age 10, he also has Lyme disease, bartonella, and babesia (all tick-borne infections).  He has probably had these infections for about five years, so getting rid of them is a very long and difficult process, during which most people get much worse before they get better.He missed 90 days of school during his senior year of high school.

Somehow, through shear determination and the help of some compassionate teachers (and the hindrance of others!), he managed to graduate from high school in June, though he is still struggling to finish his last few Calculus exams and World Lit essays now.  He was accepted at the University of Delaware for Fall 2012.  Of course, given how ill he’s been this past year, we have all recognized that he may not be able to start college this month, as expected, but, as is typical for us, we have remained hopeful and optimistic and have moved forward with all the many steps required (endless forms, deposits, student orientation, doctor’s notes, etc.)

Today, we finally met with the Office of Disability (they won’t meet to discuss accommodations until after July 30 which seems like a backwards process to us!), armed with a list of accommodations we thought Jamie would need, including a single room, reduced course load, extra time on exams, and more.  Our first surprise was that they wanted to meet alone with Jamie and asked Ken and I to wait in the waiting room.  We understand their desire to have almost-adults begin to speak for themselves and develop independence, but we had no warning that the meeting would be conducted this way, so Jamie was unprepared.  To make matters worse, he is still very badly crashed from his trip with his grandparents, so much so that even just talking took a lot out of him (as I know all of you can understand!)

When we were finally invited in 90 minutes later, it felt like getting doused with ice water as reality hit, hard.  We discovered that the deadlines for special housing requests had passed.  When I pointed out that their office wouldn’t meet to discuss accommodations before August 1, she said, “Oh, those are academic accommodations.  Housing accommodations are different – you should have filled out a form back in April.” How on earth were we supposed to know that??  So, he is without a dorm room, single or otherwise.

I know it sounds silly, but I began to fall apart at that point.  We were hoping for – planning on – this very fragile house of cards of accommodations to all fit into place perfectly.  Jamie’s chances of being well enough to attend college in a few weeks were slim to begin with; with any one piece of the accommodations missing, it would be impossible.  I tried hard to stay in control, but the tears started coming. 

As each piece of news was delivered, I felt myself losing control.  No, attendance could not be omitted from grading; class attendance was a requirement and too many absences would result in failing a class (when did this happen?  When I went to college, you could skip all the lectures if you wanted, as long as you passed the exams!)  No, there was no way to give Jamie special parking privileges on campus; parking spaces were hard to come by.  No, note-takers were only allowed if the disabled student was present in class, not if they were absent.

It wasn’t all bad news – there were plenty of accommodations they were willing to provide, plus they made additional suggestions – use of an on-campus transportation service for disabled students, the ability to take as few as 6-9 credits and still be considered full-time, plus advice to talk to the Dean of Engineering about what classes might be dropped or postponed or taken during winter or summer breaks.  But there was also a lot of discussion about whether Jamie should defer enrollment for a semester or a year, until he is well enough to manage.

Again, we knew this decision was quickly approaching and that deferment was a very real possibility, but somehow, that reality just hit us all in the face yesterday.  I was almost sobbing by the end of the meeting, trying hard to hold my emotions in for our son's sake, but completely unable to do so.  We all left in a daze, not speaking.  When we got to the parking garage, I tried valiantly to pull myself together and look on the bright side.  I said something to Jamie about maybe living at home and going to school part-time.  He said angrily, “Just forget it, Mom!  I’m going to have to defer.  I’ve been kidding myself.  I couldn’t even fill out all the forms myself – that should have been a clue to me!”  When we got to the car, I tried to hug him, but he whispered, barely holding himself together, “Not here, Mom.  I want to get home before I cry.” My heart broke, and my own tears came back.

He went straight to his room when we got home, and I figured he needed some time alone.  Our younger son took one look at the three of us and said, “What happened?”  I changed my clothes and went down to the family room.  As I sat there with my younger son, I suddenly heard our older son, from up in his room on the opposite side of the house, sobbing and howling with grief.  There is no worse sound on earth for a parent.

I went up to his room and found him lying on the ground, wrapped up in his quilt.  My husband was there, also.  We grieved together and tried to comfort him, as he let his sorrow out.  He sobbed and told us he didn’t want to be left behind while all his friends moved on.  He told us he didn’t want to miss out on anything else because he’s already missed so much.  Our hearts broke for him. After a while, I hugged him and told him, “It’s OK…we know you are suffering and disappointed. Let all that sadness and pain out.  And whenever you are ready, we will be here for you, to talk about options and move forward with you.”

I was completely wrung out, both physically and emotionally.  We all were. I had some lunch and took my nap, Ken decided not to go into work and sat down to make some of the phone calls to follow-up on questions from the meeting, and our son came down to the family room to watch a funny movie with his brother. We were already beginning to heal and move forward, though it still felt like we each had a hole in our hearts. A few hours later, we gathered around the dinner table and began to talk about options and what Ken had learned through his phone calls.

And there are definitely some options. Housing said they could still get him a single room, if we get the forms in right away. Financial services said there was still plenty of time to withdraw for the semester, and they outlined requirements for part-time students. We are still in limbo for now, unsure of what will happen in a few weeks. The Dean we need to talk to is on vacation right now. Perhaps he will be able to live on campus in a single room and take a few classes. Or if he’s not well enough for that, he could live at home and perhaps just take one or two of the easier classes, then make up some during the upcoming winter and summer breaks. There are options and choices – and a whole new list of things I need to do to investigate them!

We got up this morning and had breakfast. Surprisingly, I’m feeling a little better than I was yesterday (I was crashed even before the meeting). Our son seems more engaged and alert than he was yesterday, though his joint pain (from Lyme) is worse.  We talked a bit while we ate, then I added a bunch of new items to my to-do list. We are once again moving forward, looking ahead to a future that we hope – and believe – will be better.

And so it goes with ME/CFS (and I imagine, all chronic illnesses). You get to a point of acceptance, living with your new normal, even feeling happy. You get up every morning and try to have a positive attitude, you maintain hope and optimism and keep trying new treatments. And, every once in a while, you fall apart. You feel, deep in your soul, the pain and sorrow of all that you’ve lost and all that you are missing.  You cry and grieve and own those painful emotions. And then, once again, you pick yourself up and brush away the tears and move forward.

2024 UPDATE: Our son did end up starting college on time, just a few weeks later. We worked with our dietician (who also had an MS in biochemistry) and our doctor on many different treatments (see my post, From Couchbound to College for details), focusing on diet, methylation, treatong immune dysfunction, and treating orthostatic intolerance. Together, all these last-minute changes made a big difference. The Dean did end up being very helpful, and our son did get a single room (though with no air-conditioning or private bathroom, though the bathroom was right next door). He took 3 classes each semester (and was still considered a full-time student, an accommodation that made a huge difference). When he was able to, he took an extra class during summer or winter session when students were on break. It took him six years (and many challenges along the way), but he graduated with a BS in Engineering. He still has ME/CFS and the three tick infections (though we think he may have gotten rid of babesia) and has had plenty of health challenges along the way, but at 30 years old, he's currently doing well, living with his girlfriend in another state, and working full-time. It was definitely worth all the battles and all the tears!

NOTE: If you have a school-age child (of any age, from preschool through college/university), please take a look at my collection of blog posts about educational accommodations. We fought for appropriate accommodations for our sons at every level--elementary, middle school, high, school, and college--and learned a lot of hard lessons along the way that can help you and your child. I also included LOTS of examples of accommodations (many of which the schools will likely not suggest or even know about) that helped our kids. Those examples will help even if you are in a different country.