web analytics
Avatar of Scott MacLellan

by Scott MacLellan

Transitioning to Adulthood with a Disability: Leaving Pediatrics

May 21, 2013 in Featured by Scott MacLellan

When you’re disabled, moving on from pediatric healthcare can be pretty scary. For my entire childhood, I had been regularly treated by a team of doctors; first at the Izaak Walton Killam (IWK) in Halifax, Nova Scotia until I was six, then at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa, Ontario, until the age of eighteen.

One of the biggest upsets of leaving pediatric care behind can be losing the large network of doctors and specialists you’ve dealt with over the years. So, while you can, it’s a good idea to see if your current doctors can refer you to adult specialists. Some of these referrals will work out, but some of them will not. If something isn’t working for you, remember that it is your health, and you have the right to look elsewhere.

If you aren’t quite at the stage where you’re comfortable with dealing with new doctors, one solution is to ask any of your pediatric specialists if they would be able to continue seeing you. Sometimes, this is an easy way to go. It can save you from the long wait lists that come with certain specialist, and you already know each other, so there isn’t any need for long discussions about medical history. In a couple of cases, this worked out for me, and I still see the same dentist and orthotist as when I was younger.

Another good source for help at this time is your family doctor. Keep them in the loop as to what is going on with your transitioning, and ask them if they might be able to help you coordinate things with your other doctors.

Unfortunately, there will be times in this transitioning phase when you may feel lost, like waiting for referrals or trying to explain your lengthy medical history to new people. During these times, it’s good to be prepared. If you can, ask your doctors for a copy of your medical files. This may sound like a tall request at first, but legally, they are yours. Something you can do on your own is to create a medical spreadsheet. Include doctor’s name and contact information, disabilities, ailments, names of medications you take and their proscription numbers if applicable, and any other information you think is important to your health.

With a little advanced planning, and some patience, you’ll be able to transition to adult healthcare with little worry.

Next month: Entering the adult healthcare system.
——-

SCLAIMER: The legal details associated with some of the following topics apply to my personal experiences, and may differ from place to place. Consult with local professionals for specifics.

——-

Thank you to Mabel’s Labels for their sponsorship of Support for Special Needs! Be sure to connect with them…

150x150_adMabelsLabels

Mabel’s Labels site, Twitter, Facebook, andtheir blog! Subscribe to their newsletter here.

Did you know that Mabel’s Labels can help you fundraise? Check it out here!

What are Preschool Shoe Labels? Help your toddlers learn left from right AND label their shoes with their names!

 

No Comments »

Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

The Things That Matter

May 20, 2013 in Community Wisdom, Featured by Robert Rummel-Hudson

image[1]I take a lot of things for granted.

Looking back on what was undeniably a bad week, there were many elements I wasn’t feeling very good about. I was already feeling low myself, even before Schuyler’s Miracle League baseball situation went entirely off the rails. As is usually the case with youth sports, it happened for reasons that had nothing to do with the players but which ended up screwing things up for all the kids. Schuyler also had a small seizure, not a bad one but the first in many months, as far as we know. And of course, we’re preparing for the bad part of Schuyler’s IEP, the one that got kicked down the road until this week because of pieces that we objected to a few weeks ago. I have every reason to believe we’re going to object to them all over again on Wednesday.

So it wasn’t a great week. And as I said, I take a great many things for granted.

Until I received the email.

It wasn’t from anyone I knew very closely, and it wasn’t loaded with details so there’s no way to know what was missing from the story, what extenuating circumstances make this story different from my daughter’s. But it said enough. He was a little boy a couple of years younger than Schuyler with polymicrogyria, Schuyler’s monster. This boy had a history of small seizures that were identified as absence seizures in the email, but which sounded, judging from the aftereffects, like the partial complex seizures that Schuyler sometimes has, according to her neurologist. The boy had no history of grand mal seizures, not until the day last week when he had his first.

His first, and his last.

It’s easy to get lost in the world in which we live. It’s so easy to forget how quickly things can change. It’s not hard to miss how what seems like a quirk of development, an unusual manifestation of the architecture of a child’s brain, can turn into epic loss with one unfortunate firing of electricity. The world we live in can feel comfortable, even when it’s grey. We think about a future that might have color, but we sometimes allow ourselves to forget, for hours or days at a time, that the future could also contain bitter darkness, and that today’s manageable monster may grow fierce and hungry in an instant.

Would we live our lives differently if we thought about those monsters all the time? I don’t know, and I’m not sure I like the sound of that life, the one lived under threat. But I imagine how we might behave if we really considered the impermanence of things, and if we considered the things that matter. Happiness, fulfillment, lives that thunder and shimmer and take our breaths away. And love, the kind that makes us whole.

You have to ask yourself important questions, in the face of the sudden and the monstrous. If you knew it would all end next week, in a quick and awful electrical storm, or because of a tragic and random accident, or in any of the million ways the universe has devised to devour us, what would you do with the ones you loved? How would you live?

And if you can, if it is within your power to do so, you live your life that way.

Tags: , ,
2 Comments »

Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

One Small Light

May 13, 2013 in Featured, Featured Member by Robert Rummel-Hudson

photo[2]There’s someone I want to talk to. There’s someone I want to reach. There’s someone I desperately wish would listen to me.

And it isn’t you. Sorry.

It isn’t you because you are already here, at a site called Support for Special Needs. If you’re here, you get it. You’re almost certainly part of the club. You have a disability, or your kid has one, or someone you love or work with. We may not have anything else in common, but the thing that we do share isn’t small. When I come here and I write about Schuyler or my own fears and triumphs as a parent, you might say that I’m right, that sounds exactly familiar. Or you might say I’m full of crap. But you’re probably never going to say “Oh, that never occurred to me.” Because if you’re in the club, there’s very little that hasn’t occurred to you, often in the middle of the night when the shadows are long on the ceiling and the future grumbles softly under the bed.

I love talking to you, I really do. But sometimes, and often of late, I want to talk to someone else. Someone new, someone unaware.

I want to talk to them, and take them by the lapels and pull them close and ask them “Why? Why can’t you see? Why can’t you change? Love is waiting, if you could just see for yourself.”

Over the weekend, I spoke at an event at a local library. It was advertised as a Literary Tea. Once a year, the library hosts a tea and dessert event. You come, you drink some tea (fancy), you listen to a harpist play (very fancy), and you hear an author speak for twenty minutes or so about their book (maybe fancy, maybe very much not so, as it turns out). It wasn’t a disability related event, not at all. The attendees could have heard someone talk about history, or fashion, or squirrel monkeys. That didn’t matter. Tea, harp and fancy talk.

It was, in other words, a gathering of the people I want to talk to most of all these days.

How did it go? I’m not entirely sure. I sold a few books, so that’s good news. I talked to a few people afterwards who seemed to connect with my points about how we can build authentic relationships with the disabled, and in doing so begin to truly change the world. I saw a lot of blank faces. I saw some irritation from time to time. I didn’t reach everyone. I reached a few, I think.

That’s how it happens, I guess, this idea of a fundamental change in our society in its attitudes towards those with disabilities. You reach others, most don’t hear, but a few do.

I have an essay that I’m shopping around to sites that don’t aim specifically at the disability community. I don’t want to give it to a crowd that will say “Hear hear! That’s exactly right! I’ve been saying that all along!”, or even “I disagree, I live in this world of disability too. You’re entirely wrong, and here’s why.”

I want to reach the crowd who says “I never thought about it like that before. I’m going to give that some consideration.” I’ll even take “Why should I care? I don’t know anyone like that. Someone else will take care of it.”

Because every now and then, someone will care. A light, previously unlit, will flicker on, and society will move one more tiny step towards a world that is fair and accommodating, and which will make room unconditionally, for people like my daughter.

I’ll take those tiny steps. I’ll happily watch those tiny lights come on.

Tags: , ,
3 Comments »

Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

Tooth and Claw (and an IEP)

May 6, 2013 in Community Wisdom, Featured by Robert Rummel-Hudson

photo[1]What to say this morning, in the aftermath of Schuyler’s IEP meeting last Friday?

It was the best of times, it was the worst of times.

I thought it might be a bad one going in, actually, one in which we were going to have to fight tooth and claw for what we wanted for Schuyler. It has become more and more clear that Schuyler’s assistive speech technology use has been neglected, a fault for which I take as much blame as anyone. Her special education team has been doing fantastic work, but a kind of dependence on Schuyler’s verbal speech had made all of us a little lazy.

Schuyler using verbal speech sounds like a good thing, a great thing, even. Almost a decade ago (God, has it been that long), when she was diagnosed, the idea that she might one day verbally communicate in school would have felt miraculous. But there’s a tough reality. Schuyler’s verbal speech can usually be deciphered when it’s in the context of a conversation where her responses can be anticipated. In reactionary situations, Schuyler does pretty well. But when she wants to express a thought that is independent, or which is complex, her verbal speech fails her, badly.

The problem with school is simply that almost all of her conversations now are contextual. For her teachers, that means that she can go all year using nothing but her verbal speech and do pretty well. For her classmates, however, it means that for Schuyler to be comprehended verbally, she has to speak in very simple sentences. Schuyler dumbs it down so that she can be understood. It’s easy to miss that she’s not doing very much in the way of independently generated, complex communication.

Schuyler is finishing seventh grade. The days where that kind of communication will adequately serve her are critically numbered. I’d argue that they’ve probably been over already for some time.

We went into this IEP meeting asking for a lot, requesting no less than a total shift in the philosophy behind her AAC usage. The benchmark for success would no longer be that she managed to convey her simplest points through verbal speech, or that she could use her iPad to clarify when that speech failed her. Her iPad would no longer be a parachute. Schuyler would be encouraged, by all her teachers, to use AAC as a primary mode of communication. And we requested an outside consultant with whom we have been very successfully working for the past few weeks, to facilitate a workshop and to help lead this sea change in AAC philosophy, not just for Schuyler but possibly for those who come after her.

As we discussed the way that the iPad provides an opportunity for comprehensive communication that is impossible for Schuyler when she uses her simplified verbal communication, I handed out copies of a poem (with Schuyler’s permission) that Schuyler had written two days before. Her band director and I had discussed possible ways to get Schuyler to embrace her creativity, and the suggestion was made that if Schuyler could write a poem (something she’d toyed with before), the director would turn it into a song for her. When I floated this idea to Schuyler, she pounced on it.

This is what she created as a result.

When I shared the poem, I asked the rest of her team if they thought Schuyler could ever communicate the things in this poem using just her verbal speech. I asked if they’d known such a poem was even in her. I think Schuyler’s words had an impact, much more than anything we said. In her way, she self-advocated like a pro.

So we knocked all this around the meeting, and we came away with what felt like small victories at the time. We rejected the speech therapist and assistive technology team’s goals for language and speech, and set a date for another meeting later this month to amend them further into something comprehensive and measurable. So essentially we punted on the hard stuff. And our request for a consultant-led workshop is going to be considered, which might be a polite way of saying that they’re going to spend the next two weeks coming up with a solid way to say no. I think we’re going to have to fight hard for this one, in no small part because there’s a perception that we’re asking for someone to come in from the outside to facilitate something that the assistive technology team should have been doing.

Which might be true enough. Toes might be stepped on, I concede that. It just can’t be our problem if they are.

Overall, it wasn’t a bad IEP meeting. Most of the team was very responsive to the philosophical shift we asked for, and they seem eager to find a way to engage with Schuyler in a more comprehensive way. It did feel a little like IEP meetings of old, where we fought tooth and claw for what we felt our daughter needed. It was emotionally exhausting, like being attacked by vampires and bled dry,and we both felt like we’d resorted to becoming Those Parents for the first time in years. Not a great feeling, but a necessary one, I guess.

Did we achieve what we needed to? We’ll find out soon enough. Teeth to remain bared a little longer; claws to remain sharp.

7 Comments »

Avatar of Julia Roberts

by Julia Roberts

5 (special needs) Relationship Tips

May 1, 2013 in Featured, From Julia by Julia Roberts

vacatJust off of a blissful 18th wedding anniversary I wrote this post with tips on how we’ve made our relationship (with the challenges we’ve faced) work. I’ve been thinking about this a lot because we are approaching our 19th anniversary in June. We’re even getting away for a night or two to a local hotel. To sleep and well, you know, to do the other stuff we can do when we’re allowed time to think and be together with no responsibility but to ourselves and each other.

Even in this 19th year we’re still learning. We’re still seeking to be better partners to each other and how to make things work better for our little family. This past year especially, we’ve grown closer. I’m happy – and even a little proud – to say that we’re reinventing our couplehood. This isn’t something I thought we could do, or I guess I didn’t know we would do.

Over the many years since we had two kids with special needs, we’ve learned how to cope as a couple but the challenges took their toll. Our situation was at times, very tense. Multiple appointments for the kids for years, major life-saving surgeries, management of dozens of meds and treatments, educational road blocks, emotional fall-out of medical trauma and of course the debilitating depression of our son, who was suicidal for a couple of years.

We were (and still are) certainly on the same team, meaning we were a couple unit (romantic, right?) with the same goals 1.) Keep the kids alive. 2.) Keep them emotionally stable. 3.) Keep them on track educationally. 4.) Keep them on track socially. 5.) Be fiscally responsible to help them in the future and then everything else like give them experiences, help them become good citizens, and help them have confidence and so on. Like I said, we’re a unit in the parenting thing and we’ve learned a few things along the way…

1. We accept the roles in the family that work the best. I do what I’m good at and he does what he is good at. We can pinch hit, and then there’s that Hit By a Bus Plan I’m so proud of.

2. We’re both flexible enough to take our relationship and roles into negotiations with each other. In the past I’ve said, “I can’t order these meds anymore, you’re going to have to take it over, or at least the 17 at CVS and I’ll do the 6 mail order.” We did that a few years ago and it works. We constantly are swapping out duties, sometimes even for a little bit.

3. We’ve always made time for each other, even if it wasn’t officially a date night. There were a couple of years we didn’t go out. Or at least not very much. We had one friend and one sister we felt could stay with the kids during the worst and so, we just didn’t go out very much. But we did trick the kids and put them to bed early (they can’t really tell time) and have a date night with our favorite take out. TV off and work pushed aside. It was intentional in-house dating and completely enough to lead into “date” night, otherwise known as sex night before we passed out from exhaustion.

4. You’re important too, at least you should be to yourself. I preach to caregivers about doing whatever they have to do in order to steal some time for themselves be it for a movie, lunch with friends, sitting in a park reading a book, or doing a hobby you’ve been pushing aside. Do not underestimate how important this is. I’m sorry, I can’t take the excuse from nearly all of you that you’re too busy. You can take 1 hour a week or two 30 minute segments a week. I do it and I know you can too.

5. Don’t give up your sex life and if you do, go get it back. I wish I could tell you there is some secret to making this better for couples like ours. You know, overworked, stressed out to the max (sorry typical parents, we have you beat on this, we just do), financially strapped/stressed, worried constantly about what we’re going to mess up or miss that could impact our kid, and well, that is all a recipe for a low to no sex drive and life. In the last year or so I’ve decided to change it for us and well, we have. It was very intentional. Say no to thinking your sex life is ever going to be spontaneous again, those days are O.V.E.R. Be intentional. I will say, for us, all of the sex we’re having is honestly making all of the stressors I’ve listed above not seems so terrible. And we’re closer than we’ve been in a long time and we were pretty close before, honestly. So, things are pretty good. I suppose I have to break down and write about the sex game changers for us, huh?

My beloved is going to be so happy I’m sharing our sex life on the Internet. We are pretty proud of it though (he recently had a conversation about it with a male stranger in a bar). Feel free to add to the list because I’m still learning and can use all of the relationship tips I can get, too!

That picture above (taken in a London pub by one of our kids) sums up our relationship accurately…out of focus, off center, fun, laughter and maybe a cocktail or two to fun things up.

Tags: , ,
1 Comment »

Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

Field of Dreams

April 29, 2013 in Featured by Robert Rummel-Hudson

imageOne of the most satisfying relationships that Schuyler has had over the years has been with the Miracle League. For those of you who don’t know, Miracle League gives over 200,000 kids and young adults with disabilities an opportunity to participate in a variety of sports, primarily baseball but also soccer, basketball, flag football, and even bowling, in leagues designed to accommodate their disabilities while at the same time giving them authentic sporting experiences. There are over 250 Miracle League organizations in the US, Canada, Puerto Rico and even Australia. If you’re looking for a pure good in this world, you couldn’t do much better than Miracle League.

A few weeks ago, Schuyler was asked to participate in a special baseball camp sponsored by the Texas Rangers Baseball Foundation. The Rangers have been huge supporters of Miracle League over the years, including providing crucial support for the construction of the Miracle League field in Arlington. The Foundation partners with Baseball Fantasy Camps, LLC to host a Fantasy Day every spring for Miracle League players.

I can’t tell you how much it means to these kids. Not just the fun and the activities and the attention, but also the fact that they are taken seriously. That’s not a small thing. The kids were broken up into a number of smaller groups and went from station to station, working on various aspects of the game. They were mentored by Texas Rangers Alumni, some from way back, others only recently retired, and it was clear that these former players and coaches were getting as much from the kids as they were giving.

I’m sure I’ll miss someone, but I’d like to thank them individually. The alumni who were present included Larry Hardy, Dave Hostetler, Kevin “Shrek” Mench, Don Stanhouse, Pete O’Brien, Tim Crabtree, Mike Munoz and Ken Suarez. Schuyler’s group was mentored by Kevin Belcher and Mark Brandenburg, whom I used to watch pitch for the Rangers back when I was in college. All these guys gave of their time, and it meant the world to every player and family member there.

It’s so easy to get caught up in the day-to-day issues and the differences and the anxieties of raising a kid with special needs. It’s easy to forget that they have a lot of the same dreams that the rest of us had, about summers spent in itchy uniforms with local sponsors’ names stitched on the back (I played for the Odessa American, the local paper) and breaking in a new glove that wasn’t right until it looked like it had been run over by a truck a few times, and that perfect once-in-a-season swing that sends the ball into forever.

Unrealistic? Perhaps, but they were probably just as unrealistic when I was thirteen and imagining my name being announced at the old Arlington Stadium. It’s on the backs of those dreams that we grow up and discover the dreams that were meant for us.

For a lot of kids, baseball dreams loan them wings for a while until they find the ones fitted just for them.

(Note: Next time, perhaps we’ll ask them to just put her first name on the back of her jersey; “Rummel-Hudson” hilariously took up most of the back of her shirt, almost encircling her number. But as a friend pointed out, Boston’s Jarrod Saltalamacchia still has her beat by a letter and a half. She’ll have to make baseball history some other way.)

Tags: , , , , , , ,
No Comments »

Avatar of Julia Roberts

by Julia Roberts

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.

 

Tags: , , ,
1 Comment »

Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

What We Need From Schuyler

April 22, 2013 in Featured by Robert Rummel-Hudson

photoI’ve written for years about what Schuyler needs. From her teachers, from her parents, from her friends. From the world, really.

But let’s talk about something else. Let’s discuss what the world needs from Schuyler, and from kids like her, inasmuch as any kid with a disability is like any other.

Schuyler needs to attend school, and to spend as much of that time in classes with her neurotypical classmates, learning as much as she can on their level and finding her way through the bigger world around her. But the members of her school community need her there. Desperately.

Her teachers need to find the ways to reach her. Schuyler doesn’t follow some of the standard rules for kids with disabilities. She doesn’t always respond well to routine; many special educators will tell you that structure and order are the most important things to bring to kids with disabilities like hers. But Schuyler thrives on the new, and the teachers who reach her best are the ones who figure that out early on. Special education teachers who depend on experience to guide them are perhaps predisposed to failure. The lessons learned from individuals are of limited value. Previous experience provides a place to start, but the thing that makes teaching special education so challenging (and probably what makes it rewarding, too) is how every student requires an educational approach that is wholly unique. Schuyler is an unusually vivid example of the principle.

Schuyler needs to be around neurotypical classmates, she needs to develop strategies for moving through and functioning within neurotypical society. She needs to be able to do that on her own terms, with a recognition of the importance of her diversity. Learning to navigate those complicated relationships is going to be important, and her neurotypical classmates are the key to making that happen.

But there’s a dirty little secret of inclusion in public education. It is Schuyler’s neurotypical classmates who stand to benefit the most. Schuyler is the best friend anyone could hope to make. She’s funny and wild and most of all, she is fiercely loyal. But being Schuyler’s friend means learning to accommodate her differences. It means slowing down for her communication and allowing that her very different brain gives her a very different outlook on the human experience. There are deeply satisfying rewards to Schuyler’s friendship, and to friendship with her disabled peers. But those rewards aren’t just handed out. They must be earned, with patience and openness. Kids who never have those relationships in school grow up… incomplete, I’d say. Some of us are lucky enough to find the path one day, even if we never fully complete it. Kids who know Schuyler and her people from the beginning get there sooner. They are more complete than I could ever hope to be.

Schuyler needs family. She needs the care of those who aren’t supposed to turn away, no matter how challenging she gets or how many times they get it wrong.

But God, do we ever need her. Schuyler is a lifelong commitment, but she’s also like a warm star at the center of my solar system. When I get lost, I know where that center is. When I get disheartened, I know where to turn to for warmth. The complexity of parenting Schuyler is something I can’t even describe; in ways both large and small, the reality of being Schuyler’s father changes every day. It’s work with no job description; it’s building something large and complicated without a blueprint. It’s making it up as I go.

And yet without that work, I’d be a shadow of the person I am. Schuyler doesn’t exist to teach anyone a lesson or inspire us to be better people. That idea is frankly offensive. But those of us blessed to have someone like Schuyler in our lives would be foolish to miss the opportunity to grow into more complete human beings as a result of the authentic relationships we enter into with them. On their terms, by their rules, on the surface of their worlds.

We need Schuyler. We’re lucky to have her.

Tags: , , , ,
No Comments »

Avatar of Julia Roberts

by Julia Roberts

Special Needs Parent Wish List

April 18, 2013 in Featured, From Julia by Julia Roberts

Looking for a new healthcare provider, therapist or tutor? What do you want? Because I have two kids with multiple issues, we’ve had the chance to work (and fire) a lot of professionals. What do you look for in a healthcare partner? Can you add to this list?

Accessibility and Response. Ask about the best way to give and get information. If not through emails then by fax or calling and preferably a specific nurse in the practice or department. (WOULD LOVE THEM TO BE ON EMAIL!)

Knowledge.  Do they have specific knowledge about my child’s condition? Unless it’s rare. And if it is rare (as is our case) will they approach my child’s case with a willingness to learn.

Willingness to listen. Ask if they have time to address a list of questions you might have.

Competent and friendly staff. The nurses and office personnel

Location. Travel time, traffic patterns, days of the week appointments are available

This Special Needs Parent’s Make it Work List

Communication. I put a lot of things in writing so we were all clear. If I expected an answer to something or wanted to inform the doctor/practice about another doctor’s report/treatment I would write it down and fax, mail or leave notes for the files on visits.

Prepare. If we have an appointment with someone whose communication style is different from my own I over prepare because I can often be thrown off course trying to understand everything they are throwing at me. So I write my questions down.

Confidence. I know my children best and I like to work with healthcare professionals in a team approach but sometimes it doesn’t feel that way. I’m no longer afraid to speak up – respectfully – when I need to in order to get answers, clear the air or get clarification on something regarding care.

Intuition. I am confident in my intuition like I wasn’t in the early days of diagnosis. I’ve learned that my intuition is usually right and I don’t let my fears stop me from expressing my concerns. As a parent, I’m armed with the fact that I know my child best and that means something important. If it doesn’t seem like it’s important to someone on the team I don’t give up making sure my voice is heard.

I encourage all parents of kids with special needs to speak up and help change things that aren’t working at a practice or department to impact change for parents behind us. Likewise, when you have care that is exceptional be sure to share that with the team because chances are they don’t hear that often enough.

Some practical tips I have that help our relationships with the medical community…

- Files! Keep incredibly good files. Ask for copies of everything and keep a log of the dates of important time markers.

- Appointments – ones that take months? In order to get in, I called every day until for a “cancellation” until they finally gave up and fit us in. I’ve tried to be flexible.

- Office staff – When they’re having a bad day I try to not let that impact me and especially my kids but I’m not afraid to mention it to them or the doctor.

- Infiltrate. I try to make a point to get to know the nurses/office staff of the doctors – they are the way to information and refills! Things are just easier when you know someone.

- Be Nice. I send picture cards of the kids. I’ve been known to have the kids bring in pictures. I’ve been known to bring in a caramel corn or brownies, too. 

Tags: ,
No Comments »

Avatar of Robert Rummel-Hudson

by Robert Rummel-Hudson

The Trophy

April 15, 2013 in Featured by Robert Rummel-Hudson

photo[2] The final game of the season for Schuyler’s Miracle League soccer program always brings elevated emotion. Friends who have taken weeks to open up to each other, to overcome their own particular monsters, both neurological and social, suddenly find themselves saying goodbye just as they’re figuring out complicated social maneuvers. They’ve found a weekly routine that’s now ending. It’s unavoidable, of course. The season can’t go on forever. But at the last game and its trophy ceremony, emotions run high.

This time, it’s different. On this day, the game is stopped as one of Schuyler’s teammates, one of her favorites, has a seizure on the field.

A long seizure, probably three minutes at least. A terrifying one.

The kids are pulled off the field, and parents and coaches surround the young man. The room grows silent. It’s an indoor facility, and not a quiet one, but for the next ten or fifteen minutes, the only sounds in the room are distant whistles and shouts and shoe squeaks from the volleyball courts in another part of the building. Among the parents in these stands, there isn’t a sense of panic. It’s something more akin to resignation, and a familiar sadness. “We’ve been here before,” their faces seem to say. “We know how this goes down.”

The players are another story, though. They’re upset, they’re flustered at the unexpected drama, and they are deeply concerned about their friend. I see Schuyler pacing the sidelines, putting her face in her hands or hugging herself tightly as she goes. I walk around the field and meet her on the other side, where she immediately bursts into tears.

“I’m worried about my friend,” she says, repeatedly. She keeps watching him; all she can see are his legs sticking out from the crowd. They’re now motionless.

“He’s like my brother.” I’ve never heard her say this before. It occurs to me that she might only now be realizing she feels this way about him, now that he feels so far away.

I explain to Schuyler that her friend is having a seizure, a little like hers but also very, very different, and that he’s being taken care of. She calms down a little, but it’s clear that she is still thinking about him.

He is eventually helped off the field with the use of someone’s wheelchair (one of the benefits of Miracle League, I suppose; if you need to momentarily borrow a wheelchair, you’re probably covered), and game play resumes. The kids play hard again; they are battling it out at the other end of the field when the ambulance backs up to the doors and takes their friend away. This is probably just as well.

After the game, the kids line up for their trophies. Their names are announced, their pictures taken. Every child receives the same trophy, the one that recognizes their participation rather than some particular athletic achievement. The oft-maligned participation trophy, as it were. Everyone is thinking of the one kid who isn’t there receiving his trophy.

Like their missing friend, every player on that field earns that trophy. For the members of these teams, there’s no such thing as “just showing up”.

1 Comment »

%d bloggers like this: