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Tips for Making Life Easier in Special Needs

April 25, 2013 in Featured, From Julia by Julia Roberts

I was driving my son to an appointment the other day and I was thinking about the chaos our family used to be in when he and his sister were little. Like years ago when we had 15 appointments a week and my head was still spinning because of the diagnosis and the new life and the missing of the old life.

1. Hold One Day Sacred – When we were at the height of therapy and doctor appointments in the early years (12-15 per week) I was committed to having one day a week when they didn’t have an appointment. Our day was Thursday. I would never, ever schedule an appointment on that day. It became a day we treasured when they were little.

2. Double Up on Appointments – We try to double up everything by scheduling things together to get appointments out of the way in the same day. The kids have come to appreciate getting them out of the way by interrupting their lives just one day.

3. Easy Clothes – For my girl with low muscle tone? Leggings, jeggings or jeans with elastic sides so buttons don’t need to be used.

4. Find Your Circle – find your people and hang on to them. When you find people who support you and your family in the way you need to be supported do not let them go.

5. Find Yourself (or don’t lose yourself in the first place) – Keep something of yours sacred. Fight to keep a hobby going or find one. Carve out time for yourself even if it’s a stolen 30 minutes a week.

 

A Life’s Work

January 28, 2013 in Featured by Robert Rummel-Hudson

imageWhen I was a very young child, I knew what I was going to be when I grew up. I was going to be a zookeeper. I don’t know where that came from, exactly. I loved animals (then as now; just witness the ridiculous new giant chinchilla cage sitting behind me as I write this), so I guess to me five year-old mind, it made sense. The zookeeper was the guy with all the animals. There was a certain logic at work. And he could make other people actually clean up all the poop, so it seemed like a sweet gig.

As I grew older, I had a very brief period around the fifth grade when I thought the thing I wanted to do with my life was play baseball. It didn’t take long for me to let go of that particular dream. During my brief Little League career with the team sponsored by the local paper (the Odessa American, by golly), it was clear that even among gawky eleven year olds, I was a pretty poor baseball player.

When I began playing trombone in junior high, what became my longest running and most serious future aspiration was born. I was going to be a professional musician one day. Maybe I was going to play trombone, or perhaps I would become a band director. In college I decided I would become a musicologist. But music was my destiny, that was clear. That particular dream took a long time to let go of, and honestly, I still sort of quietly identify myself as a trombonist first and foremost. (My current skill level would not necessarily back that up.)

It was in high school that I discovered that I could write, but I didn’t really take it seriously as a future until later in college. And it wasn’t until I had Schuyler and began walking down her path with her that I found my subject, both of my book and my subsequent writing.

More than that, though, I found my life’s work.

I suspect that parents of neurotypical, unimpaired children come to feel like their lives eventually revolve around their kids. For parents of kids with disabilities, however, this becomes the literal truth. Whatever we were doing before, wherever we were heading with our lives, those things remain, but it is in the full-time and unending work we do for and with our children that comes to take the lion’s share of our souls. It is the work that drives our days, and it is the future anxiety that keeps us awake at night. Whatever I thought my life was going to be, I am now Schuyler’s father.

I would never describe that job as easy; just the worry about her future, especially after I’m gone, incrementally eats away at me like a mouse hiding in the walls of a house. But having said that, and having acknowledged the challenges that we as a family face and the even greater ones faced by many others, I can nevertheless tell you this without hesitation. I have never entertained a dream, no matter how secretly epic, that has ever come close to the deep satisfaction and immeasurable personal growth that I experience as a result of being Schuyler’s dad.

I’m a much better person because of Schuyler. I can remember the person I was before she was born and before her monster was identified, and I’m not impressed with him. I’ve not exactly arrived at the person I want to be now, either, but I can kind of see what that guy might look like. Schuyler’s the one who has shown that to me.

It wasn’t her job to do that; she doesn’t exist to make me a better person to to be anyone’s special little inspiration. But the byproduct of her life is extraordinary. Not just for me, but for everyone in her life.

Schuyler has become my life’s work. In doing so, she has given me such a life to work with.

Core Stability for Kids with Special Needs

January 9, 2013 in Featured by Shelley Mannell

 IF YOU GIVE A KID THEIR CORE…….

One of my favourite children’s books is “If You Give a Mouse a Cookie” – I love how the beginning of the story is also the end of the story.  As a Physical Therapist I understand that success in motor skills begins and ends with core stability; the core supports every skill from eating to printing to walking to basketball.  And I think it’s outstanding that so many people are now talking about the importance of core stability for kids.

However, I think we need to bring some clarity to our core conversations.  Specifically, there are inner core muscles and outer core muscles.  The four inner core muscles stabilize our spine and pelvis before every movement that we make.  (FYI these are: the respiratory diaphragm, the pelvic floor, the transversus abdominis and the multifidus.) And our research has shown that there is a key to building core stability – we need to have neutral alignment of your rib cage and pelvis and we need to be able to breathe into the front, back and especially the sides of our rib cage (we call this “umbrella breathing”).  This is the way we efficiently stabilize our body in preparation for movement.

There’s another bonus to teaching children to engage their core.  As children get that all important alignment and learn to breathe fully with their diaphragm, they impact the calming nervous system.   It turns out that when we belly breathe or when we breathe with our upper chest, we don’t impact those nerves; we calm only when we breathe by fully expanding our diaphragm.

For many reasons, children with special needs have difficulty activating their inner core. They actually do the opposite; they hold their breath in order to create stability. Sometimes they begin this almost as soon as they are born.  And difficulties with muscle tone (both low tone and high tone) make neutral alignment difficult, which interferes with inner core activation even further.  A nervous system stuck in the “fright or flight” response interferes with core activation too.  All this contributes to poor movement quantity and quality.  It sounds like an insurmountable problem but thankfully it’s not.   We are teaching therapists about inner/outer core relationships, their impact on motor skills and how best to address them in treatment, activities of daily living and recreation (http://bit.ly/WRVMI5).

So when children with special needs activate neutral alignment and umbrella breathing, every activity becomes a core activity.  And if you give a kid their core, you are preparing them for a lifetime of successful movement.

photo credits www.friendshipcircle.org

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Shelley Mannell,  PT, HeartSpace Physical Therapy for Children www.heartspacept.com

@heartspacept on Twitter or HeartSpacePT on Facebook

Forward

December 31, 2012 in Featured by Robert Rummel-Hudson

So what to say on New Year’s Eve? Do I write a standard end of the year thing? List of resolutions? Best of/worst of list? Isn’t a NYE post just supposed to write itself?

Perhaps. But I’m not sure I feel compelled to look backwards this morning.

I’m thinking about the new year, and all the changes that are coming. Schuyler goes into 2013 as a newly minted teenager, and that’s something she is taking very seriously. Schuyler works hard to overcome her own demons, some of which are related to her disability and others perhaps coming from a different monster altogether. Becoming a teenager has convinced her that she needs to grow up a little, even though honestly, it’s something that I don’t think she really wants to do.

Like a lot of special needs kids, Schuyler is hard to pin down on any scale of age appropriateness. It’s impossible to say that she’s got the intelligence level of the maturity level of a certain age group. She is all over the map, as she always has been. In some ways, she presents as much younger than she is. In others, mostly emotionally, she is wise beyond her years. What you’re left with is Schuyler, as she is, an innocent (perhaps even naive) little girl and sober young woman. Another year will bring some big changes, but some aspects of who she is will stay as they are. And the trick of reconciling those different levels of growth will still be Schuyler’s to pull off.

Julie and I will continue to try our best, stumbling at times, striding confidently at others. We will continue to do what needs to be done at home while facing a world that doesn’t understand. “Oh, that’s just like what every teenaged girl goes through,” I’ll continue to be told by well-meaning commenters on Facebook. “Oh, I get that. My daughter went through the same thing, except of course she can talk and isn’t developmentally delayed and doesn’t have the threat of seizures hanging over her head. But still…” We will continue to smile as the world sees a little girl who presents so normally and who almost passes, almost, while we worry about a future that frankly, neurotypical parents just don’t understand. We don’t understand it, either, but we know it’s going to be hard, for Schuyler most of all.

There are a lot of changes waiting for her this year. One year hence, when we’re looking back on 2013, it may very well represent something very much like a whole new life for us all. But there will be certain things that won’t change. Schuyler will be Schuyler, the same weird and wonderful little monster-slayer that she’s always been. She’ll remain in the care of a loving mother and father, in a family that probably doesn’t look like yours but is nevertheless exactly right for us. She’ll have triumphs to look back on, and setbacks, and hopefully there’ll be more of the former than the latter. She’ll be ten feet tall by then and will have even more smelly boys lurking around, unaware of the mortal danger they’ll be in. (I may be old, but I’m driven by overprotective dad power with a boost of curmudgeon for good measure. You’ve been warned, punks.)

But most of all, she’ll still have her monster. She’ll still wrangle with it, negotiate with it, figure it out. She’ll get knocked down by her monster from time to time, but Chumbawamba-like, she’ll get back up again.

And she’ll still have me. She’ll always have me, until I run out of years myself. Like all of our kids, Schuyler will walk into an uncertain future but she won’t be alone. Never alone.

Happy new year, everyone. Bring it on.

Birds of a Feather

December 10, 2012 in Featured by Robert Rummel-Hudson

It’s been a while since my family spent any significant amount of time with a group of kids with disabilities. For the past year or so, Schuyler has been doggedly committed to socializing with her neurotypical classmates, with results ranging from maybe promising to outright catastrophic. It’s rough for her, with her invisible disability and her stubborn determination to pass, to get so close to making it but falling short in the unforgiving world of middle school. It’s been beating all of us down a little.

This weekend, we got a little break. We attended a small birthday party for one of Schuyler’s oldest friends, a relationship that goes all the way back to her very first days in Schuyler’s AAC class when she was five. They don’t attend school together any more, and haven’t for several years, but they get together periodically, trick or treating together every year and doing something for their birthdays, which are just a few weeks apart. As they’ve grown older, their disabilities have progressed in different ways, and they’re no longer the little twins that they once were. But when they’re together, they are every bit as joyful as ever. Their friendship is a touchstone, a familiar place in an ever-increasingly complicated world.

Our commitment to Schuyler’s social integration with her neurotypical classmates remains as strong as ever, particularly since it’s driven so deeply by Schuyler’s own desires. And yet, on a weekend like this, in a gathering of four kids, only one of whom was neurotypical and who was something of a perfectly perfect miracle of patience and kindness (I think he might have been a robot; if he was, he’s definitely one of the droids you’re looking for), it’s not so difficult for me to recognize the temptations of sequestering these kids into classrooms where everyone is different, and so none are. It’s so easy to get caught up in our objections to putting our kids onto a kind of Island of Misfit Toys, but when these odd birds of a feather flock chaotically together, there’s a safety in numbers that, for a short time at least, can feel comfortable.

It’s perhaps something of an illusion, of course. The party was held at a miniature golf/go-carts place, and on a slightly chilly December Sunday afternoon, so the place was pretty deserted. But there were still a few other families, and I saw some of them giving The Look to the party of different kids playing a very different kind of golf. But I must confess, I was watching for The Look. Schuyler and her friends seemed carefree. Their flock was fine.

The third girl in the party wasn’t someone I knew, but in very general terms, she was on the autism spectrum and had some other challenges as well. Those challenges didn’t line up at all with Schuyler’s or her friend’s, so it was enlightening to watch as the three of them navigated their interactions. Schuyler and her friend, non-verbal but highly social, and this new girl, completely verbal but trying (with, I must say, a good deal of success) to navigate some tough social issues and make it all work.

It did work, and I was proud of them all. Schuyler was extremely anxious going in; she’s had a rocky time with kids her age over the past few months, and lately she has often seemed ready to give it all up and go into the woods to write her manifesto. But she ended up having a good time, aside from a few moments when her newly discovered melancholy caught up with her. She shakes those moments off better than her father, however. The defining moment for me was tearing through the go-cart course, Schuyler sitting at my side and squealing with happiness for the entire five minute ride.

My hands were numb from the cold, and I still have a slight ringing in my left ear from Schuyler’s ecstatic barbaric yawp. But it was the finest five minutes I’ve spent in a very long time. I am always honored when I get to join their flock.

The Teachable Moment

November 12, 2012 in Featured by Robert Rummel-Hudson

Today at a local store, Schuyler encountered two exceptionally mean-spirited young teenaged girls who were mocking her behind her back as she played a video game, completely oblivious to what was going on. As I walked up behind them, I heard one of the girls say, “I’ll bet she’s retarded.” Then they saw me standing there.

I have a confession to make. I am terrible at teachable moments.

This certainly isn’t breaking news, or even a recent epiphany. Schuyler has had a diagnosed disability for over nine years, and an identifiable one for longer than that. Her behavior can be odd; her speech can sound Martian. While in many ways hers is an invisible disability, it does’t take much in the way of observation to come to the conclusion that she is a very unusual little girl. And human nature being what it is (ie. dependably horrible), we have never had a dearth of condescending looks and snotty remarks to deal with. We live in a North Dallas community that probably prizes conformity more than most, so I’ve had plenty of opportunities to develop a thick skin and sensitive reply for the decided insensitive remarks that generally accompany Schuyler in her progress through this grand rough world.

But I’ve never gotten there. I’ve never reached the point where I could sigh, collect my thoughts and then patiently explain why Schuyler doesn’t talk, or why she behaves the way she does, or why hearing a term like “retard” can be so devastating to families like ours. I’ve never achieved the ability to transcend “protective father” and embrace the teachable moment.

I wish I could say that when faced with rudeness or even abuse directed towards my daughter, even in the absence of patience and an appreciation for the opportunity to shine a little light into a dark world, I at the very least will wield my authorly wit (a dubious thing to begin with) and eviscerate the insulting party with a cutting barb of my own. But the sad truth is, I rarely even rise to the occasion that much. When faced with a hurtful world, my response is fast, confrontational and decidedly uncivilized. I can usually be counted on to provide a two-word response, and not “Happy Birthday.” I become Caveman Dad.

This is what happened today. My response to the girls wasn’t constructive. It wasn’t kind, or educational, and it wasn’t appropriate. When they returned several minutes later with their grandmother, my responses to her were similarly unimpressive, unless perhaps you’re a casting agent for a basic cable reality tv program. Fortunately for me, the grandmother seemed to know her grandkids well enough not to be surprised by their behavior, and the whole thing was defused quickly. There were no apologies, but no one called the cops, either. I’ll take that.

Any time I mention incidents like this on Twitter or Facebook, I inevitably get lots of “Go get ‘em, Dad!” responses, and they certainly do make me feel better about my hot head, my short fuse and my harsh language. Well, in the short term, anyway. But the truth is, I’m not proud of my reactions. I’m not just a dad looking out for his little girl. I’m also an author and speaker on disability issues. And theoretically at least, I’m a role model for my daughter. (Stop snickering back there.) I’d like to be able to display a higher standard of behavior. I’d like to do better; I’d like to BE better.

I’m not sure what the answer is to this problem for me. The piece that I seem to be missing the most, patience, isn’t one that I come by easily. And every time someone says something horrible or insensitive to Schuyler in front of me, I can’t help but wonder how many nasty things she hears when no one is present on the scene except her classmates and peers. It doesn’t help that she’s becoming a touch paranoid about what people are saying about her. It’s clear she’s heard enough to fill in the blanks herself when she’s unsure. Shy of even her thirteenth birthday, Schuyler has become a little jaded about the people around her, particularly the ones she’s never met and who simply judge her on her shaky ability to conform to the world around her. She gets that from her own experiences with that world, and she no doubt gets it from me, despite my desire to teach her otherwise.

I’ll keep trying to do better at this, although I feel confident that I’ll probably continue to fail. That depresses me a little, but on some level, honestly? I can live with it if I must. I wish I could do better at the teachable moments. But I hope to never disappoint her when what she really needs is an protective father. Even if he’s just a caveman.

What parents need to know about occupational therapy in the school setting

November 6, 2012 in Ask the Occupational Therapist, Featured by Dr. Tiffany Showalter

By:  Dr. Tiffany G. Showalter, OTD, OTR/L

An occupational therapist or OT is a highly trained medical professional who evaluates and treats individuals of any age who have problems engaging in meaningful activities or “occupations” relevant to their everyday lives.  I can’t tell you how many times I have told someone that I am an OT and they want to know about getting someone a job.  In this economy, wouldn’t that be nice if I could get everyone a job?  The “occupation” in occupational therapy actually comes from the word occupy, and means any activity that “occupies” a person’s time.  This may include self-care, play and leisure activities, in addition to, work.  For a child, their job or occupation often involves playing, learning, and going to school.

Children make up a large part of the population receiving OT services and these services may be in the medical clinic setting or in the educational setting.  Not only are the settings different, but the priorities of each are quite different.  There are many children who require medically driven therapy services to participate in their relevant occupations and they can be referred for these services by a physician.  In the schools, children who have a medical need for therapy may or may not require therapy for an educational need. Additionally, a physician’s referral is not required nor does it determine need or amount of services provided.  OT in the school setting supports the student in meeting his/her educational goals; therefore, the level of OT support is driven by the student’s IEP. Educationally relevant therapy services may be indicated if the expertise and knowledge of the skilled professional (OT) is required for the student to meet their established educational goals and objectives.  It is important to understand these differences and why the goals are specific for outcomes related to the setting for which the student participates.

What is educational or school-based OT?

Educational or school-based OT is designed to enhance the student’s ability to fully access and be successful in the learning environment.  This might include:

  • working on handwriting or fine motor skills so the student can complete written assignments
  • addressing oral motor or swallowing concerns for eating while at school
  • helping the student organize himself or herself in the environment so that he/she can attend to activities appropriately and follow directions
  • working with the teacher to modify the classroom
  • adapting learning materials to facilitate successful participation within the school.

School therapy is provided in the natural school environment, meaning treatment and/or evaluation may take place in the classroom, library, cafeteria, playground, or other designated area within the school.

How do I get OT for my child?

Occupational therapy (OT) is considered a related service under Part B of the Individuals with Disabilities Education Improvement Act of 2004 (IDEA), and is provided to help students with disabilities to benefit from special education.  As such, OT is a supportive service.  If your child has a disability, as defined by IDEA, and needs special education and related services to meet their unique learning needs, then he/she might require an OT evaluation or services.

How are therapy services determined?

An OT will evaluate the student using both informal and formalized assessments.  They will also review the student’s current IEP, interview teachers and staff working with the student, review work samples, and/or observe in different school settings.  After completing the evaluation, they will then present the findings to the IEP team.  Next, the IEP team determines whether OT support is educationally necessary based on the evaluation findings and the recommendations of the therapist.  Finally, the team determines the amount, frequency, and duration of OT services.  OT may be provided individually or in groups and may consist of direct treatment, consultation, or monitoring.  Consultation with teachers and school staff is an essential part of occupational therapy services.  By providing information and training, the educational staff can integrate the recommended strategies and techniques with the student everyday.

Who should I contact if I have concerns about my child which I feel may need addressed by OT?

The best place to start is with your child’s teacher.  However, you may also contact your county school system’s special education department or your school’s occupational therapist with your questions.  The American Association of Occupational Therapy is also a useful resource.

Disclaimer: I hope you enjoyed reading this article.  Please remember you are reading this information of your own free will and are taking the information at your own risk.  The author is the legal copyright holder of this material it may not be used, reprinted, or published without my written consent.  This information is for entertainment and informational purposes only and is not intended to provide or circumvent medical, legal or other professional advice.

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Watching (privacy and special needs)

October 22, 2012 in Featured by Robert Rummel-Hudson

Schuyler had an odd exchange with one of her neurotypical friends at school last week, which is hardly surprising, both for a twelve year-old girl and one wired as strangely as she is. It was a conversation rife with peril, illustrating how almost paranoid she can be when she’s afraid other little girls are talking about her (which is probably bad, because at her age, someone is always talking about someone), and illustrating repeatedly how her presentation, naive and direct as it is, can feel very much like bluntness, or even rudeness.

Schuyler steered this conversation into dangerous waters, and then somehow, with the help of friends who seem to grasp her difficulties clearly enough not to take her too personally, she navigated her way out of them. It was one of those episodes that probably happens every day to almost every pre-teen girl in America. But two things were different about this conversation.

Because of Schuyler’s disability, it took place mostly by way of text message, using the iPad that she utilizes as a speech prosthesis.

And we watched the whole thing transpire in real time.

For some reason, it’s very important to me that you should understand that this wasn’t the result of an intentional plan on our part. When I set up iMessage on Schuyler’s iPad, I also set it up on her little iPod Touch, which she uses quite frequently as well. The idea was to give her more options with which to communicate with her friends (who at the time were almost entirely our adult friends as well). But when she has a conversation on one device, they show up on the other, complete with little audio notifications.

Even when one device pings, we try not to look at what she’s saying. But when it went off in the middle of the day last week, it was clear that she was sending messages during school. That’s not a problem in and of itself; knowing that she was perhaps doing the high tech, Twenty-first Century version of passing notes in class was encouraging. But we looked at the conversation that was unfolding because it was taking place with someone who wasn’t in her contacts, someone who just showed up as a phone number, not a name. And then we kept reading as it happened. Reading, and worrying.

So yes, we watched the conversation, and we fretted about many things, not the least of which was a persistent question: Were we invading Schuyler’s privacy?

The answer is clearly yes. I can make as many excuses about not knowing who she was talking to, or not intentionally setting up her devices so they would function as eavesdropping implements, but the truth is still what it is. We were listening in on her conversation. We started because we wanted to be sure she was talking with a classmate and not a child molester, but we stayed with that conversation long after we figured out whom it was with. Out of fairness to Schuyler, we told her that we’d seen the conversation and we talked about what had gone down. But that conversation was very much after the fact.

To be honest, I’m not entirely sure how I feel about it. I’m writing this, so clearly it’s not a casual invasion. For years, we had the power of checking the transcripts of Schuyler’s daily output on her dedicated speech device but almost never did so, respecting her privacy except in a few cases where something happened at school where that transcript could clear up questions and speak for her in her own defense. Inasmuch as we could, we always granted her a measure of privacy. We still try very much to do so.

And yet, I guess our vigilance manifests itself in some ways that aren’t always pretty, or fair. And when I weigh the possibilities and potential outcomes of her new conversational world, I feel like a creeper for reading her exchange, but I am willing to accept that if it means I don’t feel like an abysmal failure later after she befriends someone online who takes advantage of her naivety and her trusting nature and hurts her one day, and I never saw it coming.

So we make bargains with the devil. We commit small crimes against our child, in the hopes that we can prevent larger ones later. That hope may be loaded with its own naivety, perhaps. But we’re a little like Linda Schell, the mother in the film version of Extremely Loud & Incredibly Close, who (SPOILER) secretly goes before her son Oskar on his desperate adventure in order to protect him from afar. In the film, she explains it to him at the end.

Linda: I went into your room and I tried to think like you did. I wanted to understand.
Oskar: You were snooping on me?
Linda: I was searching for you.

We try to go out into the world with Schuyler, which of course we can’t, and protect her from the pitfalls both of a dangerously complex world and the traps of her own making. This is, of course, also impossible. But we take on that quixotic mission because we want to hold her above the worry and the heartbreak. Doing so means standing in it knee-deep ourselves. And I suppose it means stealing from her independence sometimes, in the hope of strengthening it in the bigger picture.

I feel real hesitation to meddle in her life, and I think it might be a mistake, albeit one I make out of both love and necessity. I can’t help it. I watch her from afar, but not too far, because I love her desperately. And also because I know her monster watches her, too. But with eyes that are both cold and opportunistic.

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Julia, site co-founder, contributes to Build-A-Bear Workshop’s blog about her daughter’s journey with special needs. Please visit to see what story is being told on our site sponsor’s blog.

Special Needs Induced Flexibility

October 17, 2012 in Featured, From Julia by Julia Roberts

I am fairly rigid when it comes to organization. This stems from a need to control. I know this, so this isn’t a new revelation for me. My organization skills help in just about every other area of my (our) family life. It impacts schedules, cleanliness, time, etc. etc. You get the idea.

This was all well and good until I had a kid or two that needed extra care. Extra care brought appointments for doctors and evaluations and therapy and extra trips to the pharmacy for medication and special diets and a certain level of energy even though the energy had already been zapped by late night breastfeeding and diaper changing. Extra care increased the paperwork, calls to insurance companies and to doctors to set appointments and deal with copays.

Life got complicated for someone (me) who likes organization (read: control).

Fast forward through two kids’ kidney transplants. Dialysis for one. Emotional fallout. Education deficits. All things that bring complication with them and complication factors that have laughed in the face of my need for organization and control. Laughed.

Now, 13 years into the special needs world, I find myself reexamining my flexibility. Is it enough? Take yesterday’s issues with our son…he’d come home with a detention slip (again) because of his behavior. His behavior this year isn’t as good as last years and well, we have no idea why. Is this grade harder? Puberty? Growing out of current mental health cocktail? A mixture of all of the above?

The way isn’t as important as the fact that this situation demands more flexibility from me. I think, “Haven’t I given in enough? Haven’t I changed enough to accomodate this life?”

Sadly, no, apparently not.

These new issues bring new plans and have set us in yet another direction to get the behavior under control (After all, you can’t go around flipping off the teacher, can you?). It’s required my husband and me to figure out a new tact to take. Again. We’ve come up with the current currency for him (electronics and working on a jeep with his dad) at the top of the list. But what if this doesn’t work? What if he continues to get detention slips and flipping people off?

Last night as I was sighing (ever so calmly and resigned), I looked at my husband and said, “We have to remember, he’s not normal and we’re trying to make him fit in a normal world.” When I said that it was the first time I’d voiced that fact aloud to anyone. And it made me incredibly sad because it’s heartbreakingly true.

There are always new ways to be flexible in the special needs world. And if I ever forget it, there’s a new situation to remind me.

The stress we bury while waiting.

September 19, 2012 in Featured, From Julia by Julia Roberts

Every 30 days, give our take a few days that way or this way our kids get blood draws so we can check on their kidney function. We’ve done at least that (or a lot more if warranted) for the last 5 1/2 years for our son and the last 3 years this month for our daughter.

This monthly schedule is based on the idea that the tests would give the doctors an indication that the transplanted kidneys are starting to fail and they would, hopefully, be able to begin a steroid protocol to (again, hopefully) turn the rejection around which usually means a hospital stay for about a week.

In July we had a really bad scare – our first big one – when my son’s labs showed what the doctors were sure was rejection. They called and wanted to admit him immediately. We were 7 hours away by car and over an hour away from the nearest hospital, which we opted for to double check the labs from 2 days before. It took us a few days but the lab numbers came back to a safe number, then to my son’s baseline a week later. Scary.

Every month (hopefully together) I drive the kids to the hospital for labs. Then we wait. We hold our collective breaths and wait for the results to tell us yes or no. Yes, we have to figure out the next treatment plan or no, we’re good for another month.

The period during the lab draw and the wait is, well, part of life. It’s part of our normal. This is to say that it may be our normal, but there isn’t anything normal about very nearly constantly thinking about a failing kidney.

The normal-ness of it all makes me forget that I bury the stress it brings each month because it’s what we do, we just keep moving forward. Every once in a while I feel it though. I feel the heaviness of the potential results and what they could mean for my kids and our family if they are negative results.

Then I remember that for both of my kids this is monthly. Until. And I remember this is my normal and I bury the stress and worry again.

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