Lessons Learned About School

This column first appeared in the Fall 2011 Newsletter of the Spina Bifida Association of Iowa.

Just as a child’s physical needs change from year to year, so does his or her academic needs. The school year brings ongoing opportunities for parents to learn how to academically support their children. Stross is now 20 years old and taking one to two classes a semester at a local college. After two decades of learning – his and mine – I continue to value this advice:

1 – Address physical needs separate from academic ones. Sometimes teachers and parents – out of eagerness to accommodate a learning obstacle – fail to fully break down an academic issue into physical and academic components. In first grade, Stross began arriving late to his classroom after lunch. The teacher, believing his trek to the cafeteria using his walker was too taxing, allowed him more time. Stross continued to be late. My diagnosis: He was enjoying his time at lunch more than the lessons that followed it. Once we addressed the academic issues and provided a learning incentive, he made it back on time, walking – and learning – on pace with his peers.

2 – Break through teacher barriers. Teachers may have preconceived ideas about what it will be like to have your child in his or her classroom. They may also have used methods and accommodations with other students that they assume will work equally well with your child. Each child has a unique learning profile. That remains true for children with special needs. For our family, that once meant constant, polite reminders that our son with spina bifida (and an assortment of learning disabilities) was different than the boy with cerebral palsy (and his own set of learning issues) that she taught the previous year. Communication is a must. Talk regularly with teachers about your child’s interests, and share stories about ways that he or she learns best at home.

3 – Keep using methods that work. Proven learning methods or tools keep working, but you may need to help teachers adapt ones that you know work well. For instance, Stross played a stellar game of Barney Concentration as a preschooler. I helped his middle school science teacher (and his paraprofessional) see how helpful that skill was when learning the names of elements on the periodical table. One weekend of Chemical Elements Concentration helped him earn a perfect score on his test that Monday.

4 – Support social aspects of learning. Children with special needs must reintroduce themselves to their classmates year after year. Because their uncommon life circumstances fall outside “the norm,” they need to help friends understand how the changes that they are experiencing differ. You may need to encourage your child to have conversations with their friends about uncomfortable topics and even practice conversations about things such as why they need to use a bathroom on a regular schedule.

5 – Enjoy each year. Your child – and you – build on accomplishments from one year to the next. Your child’s ability to be successful in the future is tied to the successes he or she experiences now. Enjoy what you are learning, individually, and together. The future is yours to create.
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Are you: "Focusing on What Matters"?

Our family's copy of the Spina Bifida Association of Iowa Summer Newsletter arrived today. I've been invited to be a guest columnist, and my first submission was printed in this issue (see below).

You may have come to my Injoy Blog because of the SBAA newsletter or found your way here through the website for my book, Involuntary Joy.

If you are coming to my blog for the first time, I realize you might be coming to see how similar our family's story is to yours. So you don't get too bogged down in my blog, let me point you to some specific entries - blogs with video logs (or vlogs)- that might resonate with you the most.

• A recount of our most recent Mayo Clinic day. Our Day at the Mayo Clinic - Rochester.

• An excerpt of a presentation that I make at educational training workshops and for future educators that attempts to explain how having a child with a disability creates a perfect storm for a family. When Your Baby Has Birth Defects. and Miss Blaser's Contemporary Issues Class.

• A recount of how I relive the day of Stross' birth every year. Stross Your Birthday is Nearly Here.

• A recount of how our family ran around Des Moines to fit in seeing two of Stross' doctors on a day with very sub-zero temperatures. A Day for Doctors.

Please let me know what you resonate with and what you might like to see discussed more. I believe our family and yours silently lives through much of life simply because it seems easier at the time (and maybe it really is easier). But sharing stories has benefits that cannot be denied: 1) We are reminded we are not alone, and 2) Others might obtain a glimmer of understanding for the first time.

If you are coming here because of the SBAA newsletter: Thank you and welcome. I hope you feel at home.

Joy

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Focusing on What Matters
published in Summer Newsletter, SBAA of Iowa

My oldest son, Stross, was born on May 5, 1991, arriving with spina bifida, hydrocephalus and a host of other congenital anomalies. He ushered my husband and I into an existence that has us unable to fully remember what life was like before his birth. And, truly, I wouldn’t have it any other way. Neither would Mark. (I asked him.)

Now, I am not about to wax poetic regarding the blessing it is to raise a child whose life is shaped, if not defined, by major birth defects. That doesn’t mean I don’t regard his life – and therefore mine – as blessed. It simply means I believe any notion of a blessing is lessened if I don’t regard my life’s dark moments with equal respect. After all, dark moments frame life’s lighter ones, coaxing me to focus on what matters most.

I’m resisting the temptation to tell you what I think that is, for I recognize that each family is charged with the task of determining what matters most at any given time. As parents, guardians or family members of someone born with spina bifida, I believe you know what I mean.

- Is owning a vehicle that can’t accommodate your child worth the luxury of keeping it?
- Is fighting for the right to sleep by your child’s hospital bed worth the confrontation you know you might encounter?
- Is time spent examining an EOB (explanation of benefits) worth the savings you might discover because of a misassigned charge?
- Is the opportunity for a night out worth the hassle of arranging respite?
- Is your child’s right to be taught in a class with his or her peers worth the meetings and tense conversations it might take to make that happen?
- Is the chance for continence worth the price – not literally but figuratively – of bladder augmentation?
- Is not making a career change worth the health insurance your family enjoys?
- Is explaining your child’s disability to a curious stranger worth the potentially pitiful reaction you might get in return?
- Is ignoring your marriage worth the effort it will take to either try to make it better or allow it to fall apart?

Sadly, this list only represents a small portion of the ongoing challenges regularly faced by families of children with disabilities. I can only guess that, as with my husband and me, your life has swirled at various velocities since your child’s birth, picking up speed or calming in response to the issues that regularly come your way. And, as with a perfect storm, there is a calm center. I regard the center of our family’s storms as the place where Stross resides, oblivious to all that is clamoring around him – at least most of the time. For his sake, I hope that always remains true.

What about you? Do you identify with the tumultuous and yet peace-filled moments that shape the lives of those who love someone born with spina bifida? That has been my existence for 19 years, and now I am one of the “old moms” on the block. That fact fascinates me, for I feel I still have so much to learn.

Stross still lives in our home with his younger brother, Skye, and likely will for a while – but not forever. He has had 14 surgeries in life and likely will have a few more – but not for a while. He is living a full life with opportunities to continue learning skills that will further enhance his quality of life – but not without a lot of extra work on our end.

I look forward to sharing life with you through this column or through my blog. Perhaps your journey is just starting out, or maybe you have lived experiences I’ve yet to face. I would love to hear what you have learned because of your son or daughter. Medical procedures, insurance battles, self-care advice, vacation tips, family encounters – you name it. Dark moments or light: There is joy in the midst of it all. Let’s plan on finding it together.

Our Day at the Mayo Clinic - Rochester

The medical profession has played a significant role in our son Stross' life since the moment his lungs first filled with air. Please understand that medical professionals may have assisted him in taking his first breath, but no more than they would have another newborn. No, their most diligent medical efforts for our otherwise healthy newborn-infant-child-now-a-young-man, have been related to his physical and intellectual condition.

His malformed body has been the reason our family has grown comfortably accustomed to the rhythm and reason of medical facilities. During the span of his 19 years, we've split our time between four major hospitals and become well acquainted with more than two dozen doctors. We've also shared hours upon hours of life with occupational and physical therapists. In addition to seemingly endless therapies, these years have also been marked by 14 surgeries and a hospitalization for an illness–rotavirus–that got out of hand.

But those facts aren't offered as complaints - only context. It's my way of attempting to explain how a place like the Mayo Clinic in Rochester, Minnesota, now feels like a former hometown we love to visit. Well, only if it's for a day of checkup appointments (a.k.a., the Spina Bifida Clinic Day).

Our family probably appreciates clinic days the way distant relatives appreciate family reunions. You get pre-visit anxiety, but mostly related to not fully knowing what to expect. And, you might enjoy a full day of really good news, or a day that goes down the dumper for a hidden reason that finally becomes known. There is only one way to find out, however: Show up and endure it all.

There is soooooo much more I could write about the way our family tackles a typical clinic day.

* How we strategically pack for a day that's mostly hurry-up-then-wait.
* How we understand to rush from one diagnostic test to the next so we won't get behind schedule the remainder of our day.
* How we individually entertain ourselves in our examination room "home base" while waiting for one doctor after another to stop by for a consult.
* How to create a new experience on our way to lunch or another building if we ever do get ahead of schedule.
* How we've learned to ask questions for which we might not like the answer.
* How coffee breaks and chocolate treats perk up the most tiring day.
* How budgeting a shopping stop on the way home is an important component to our personal wellness.
* How preparing for the possibility of tears makes them a bit more tolerable should they decide to well up and spill out.
* How time spent in an exam room or waiting room moves at half the speed of time spent eating lunch.
* How we feel connected to every person with whom we share an elevator ride - whether they are on their way to work or medical tests and consults of their own.

Our good news on this visit: Stross has graduated to annual visits across the board.

Our not-so-good news: Stross' body is no longer capable of safely bearing his weight when he pulls himself to stand. Where he once was capable of walking long hallways for large portions of time (using leg braces and arm crutches or a walker), he now should no longer attempt to stand.

Basically, we saw our son stand on his feet for the last time on this visit - if you could even call what he was doing on Monday "standing." I recognized the grief when it came. The same brand of tears I cried when we realized he should no longer use his crutches or walker to walk. My solace at that time was: At least he can still stand. Now that becomes a memory too. And you can see what it looks like as well, should you decide to join us on our clinic day via the vlog. I chose not to record my tears. Those are for my memories alone.

I hope you do watch these few clips from our day; I hope you enjoy seeing such a day through our eyes. If your family has someone that gives you a reason to be familiar with such experiences, I'd love hearing how your family tackles these days. We're all in it together, aren't we? And thankfully so.

"And I Learned Some New Things Too"

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On March 25, 2010, I was privileged to speak in Ms. Marian Greiman's Human Development class at Garner-Hayfield High School. My niece Jordan Blank helped host my time there, as it is a class she is taking. Jordan and I observe in our vlog (which she made before heading to track practice!) how it is possible to be related to someone and still not know things that are important to understanding the dynamics of that person's life.

The students were very attentive and asked thoughtful questions. I hope they now feel more comfortable learning about disabilities that shape the human condition. More than that, I hope they become more willing to meet and interact with people whose bodies happened to have formed differently than theirs.

Highlights of the day in quotes:

"And I learned some new things too."

"It seemed like everyone in class listened the whole time. You held their attention, even some that I know, for them, it isn't always easy to do."

"Thank you for saying what you did about not believing God did this to you. That has made all the difference to me. My brother has cancer, and I've been having a hard time. And you just helped me with that so much. I just want to thank you."

I hope to keep the dialogue going - to keep sharing about things that aren't always easy to talk about. Life gets exponentially easier when you realize you don't have to figure things out on your own.

Thank you, class. Thank you, Mrs. Greiman. Thank you, Jordan! (And, thank you, Krista, for your help too.)
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What You See, What You Get

As printed in
BE Magazine / Spring 2009 issue

My first strands of gray hair made themselves known during Mrs. Singer’s 8th Grade English class. Actually, Mark Bostrom, the young man who would—in my freshman year—become my first official date, leaned forward to softly herald their arrival from the desk immediately behind mine: “You have gray hair. Did you know that?”

“Where?” I inquired, for I had not known it.

“Back here,” he said, reaching up to move a section of hair near the nape of my neck.

I pretended to listen to Mrs. Singer and tried not to flinch when Mark—without warning—pulled out a strand. He handed it over my shoulder to affirm his discovery, and I looked with fascination at the evidence. Before I could formulate a response, he said: “Do you want me to pull them out? There are probably eight. Maybe more.”

What!?!

I cocked my head just enough to let him know I had heard his offer, but not enough to attract Mrs. Singer’s attention. Eight of them? He had counted? The thought fascinated me, but his offer to pull them out fascinated me even more. Obviously Mark believed that women weren’t supposed to have gray hair—that we were to rid ourselves of its existence by removal or, possibly, concealment.

Too young to have peers facing similar propositions, the moment felt momentous: My 13-year-old body was aging prematurely. How was I to respond? What kind of woman I would I be?

I shifted my position enough to lean back and whisper a decisive answer.

“No,” I told him. “Don’t pull them. They’re mine.”

Then I turned, looked him in the eye and flashed a smile. He smiled back.

Thirty years and tens of thousands of gray and white strands later, I have not looked back. I am now in my middle 40s with hair color that defies my age. I’m not as old as some believe me to be, and I’m ok with that. It is what it is.

In 8th Grade, I had no way of knowing that this don’t-assume-you-know-me-by-my-looks testament would help me identify with my oldest son, a young man of nearly 18 years who was born with physical and intellectual disabilities. His life-limiting circumstances have shaped not only his life’s course, but mine. And from the moment I first laid eyes on him, the deepest part of me continues to cry out, “Don’t regard him as less than anyone else. He’s mine.”

I certainly understand Stross is not “mine” in the most possessive sense of the word. I regard his life as mine to protect and guide. I also revere the wonder of who he is and regard him as a treasure to be shared with whomever can accept him for who he is: an incredible young man who lives nearly every moment with palpable joy.

As an infant, the extent of Stross’ disabilities was nearly imperceptible, for others couldn’t see he lacked the nerves necessary to walk, nor could they notice that he soiled ostomy pouches rather than diapers. Most of all, they certainly couldn’t tell that he would grow up only possessing the problem-solving skills of a seven-year-old. It took his father and me more than a decade to discover that ourselves.

Unlike that day in Mrs. Singer’s classroom, no one leaned forward to tap my husband and me on the shoulder then whisper the revelation of Stross’ rare birth condition into our ears. Our knowledge came as suddenly and surprisingly as the moment of his birth. Then, as with the moment of clarity when I accepted my gray hair, I accepted the reality of Stross’ altered existence by answering a question. This time the question was: “What kind of mother am I going to be?”

Since the day of his birth, Stross has helped me define my role by living as a constant source of unadulterated joy; and his joy exists regardless of circumstance. It’s a witness I value more with every passing year, and I continue to aspire to live as he does, taking in each moment as if it was designed for pleasure.

For instance, some legal papers arrived in our mailbox a few weeks ago, outlining the need for him to establish my husband and me as his legal guardians. As the papers clearly indicate, the action is necessary because his “decision-making capacity is so impaired that [he] is unable to care for [his] personal safety or to attend to or provide for necessities [food, clothing, shelter, medical needs] without which physical injury or illness may occur.”

As I read the stark legalese, a renewed sense of grief swept over me, and I choked with emotion. My son was nearly 18. He should be anticipating new relationships with roommates and dorm-mates, not being asked to re-define his relationship with his parents by relinquishing his right to make certain life decisions.

When my husband noticed I had been crying, I held up the papers in explanation and offered a simple statement: “The guardianship paperwork arrived.”

Stross snapped to attention and looked my direction with a face that beamed excitement. He sat taller in his wheelchair and lifted his hands with exclamation: “My lawyer sent me papers? Are those from my lawyer, Mom? Do I need to sign?”

I was momentarily speechless—just long enough to make the emotional trek from my path of self-pity to his land of endless delight.

He cued my response again: “Do I need to come up there and sign my lawyer’s papers, Mom?”

His repeated use of the term “my lawyer” brought an involuntary smile. This was about his life, and he owned it. He deserved a response.

“Well, yes,” I said. “I guess we should just get these signed right now, huh? Why wait?”

“Yeah. Let’s do it,” he said, beginning to wheel up the ramp to our dining room.

Why indeed? Our life as a family is what it is. We have a 17-year-old son who won’t be doing the same things his chronological peers are when his eighteenth birthday arrives. In fact, he’ll likely never keep pace with others his age for most of the things that comprise daily life. And that’s ok. It really is.

Maybe I started to learn that lesson in 8th grade and I have my early strands of gray hair to thank. Maybe realizing that my life might not track like that of my chronological peers has helped me as a mom.

As Stross regularly demonstrates, you just have to claim the life you are given, and then keep moving forward. After all, what you see and what you get don’t have to match. Sometimes what you get is far, far better.