There are seven pages of definitions for the word retarded on urbandictionary.com. If you’re offended easily, I wouldn’t recommend looking it up.

Here’s the thing: I have three teenage kids and a fourth just about ready to hit the teens. I’ve heard, at various times in the past eight years, pretty much every variation of every definition they included on that site.

The word irritated me long before Katy came along. It means a little more now.

On Tuesday, though, I had a conversation with our (now) 12-year-old son that made me smile. A little background here. I coach Bry’s sixth grade baseball team. And when you spend any amount of time with a bunch of 11-12 year old boys, you hear all kinds of talking, including some terms you’d rather not hear.

Tuesday, on our way back from practice, Bry said one of the kids had told another one of our players that he threw “like a retard.” Not exactly the teamwork thing I’ve been working on. What interested me more though was what Bry said next. “He didn’t say it in front of me, though,” he said. “If anybody says it front of me, I stare at them until they figure it out and change it to another word.”

I asked him if that worked.

Bry’s reply: “They know not to say that around me.”

Can you see the smile on my face as I’m writing this?

This is the kid Shel and I were so worried about when we had Katy. He had been the baby of the family for six years before Katy came along. We didn’t know how he would react with a new baby to contend with.

Love at first sight. Katy smiled at Bryan just a few seconds after this. She pretty much has kept smiling at him ever since.

We shouldn’t have worried.

Have you ever tried to get a kid off of a video game? Kind of like trying to get one of the queen’s guards to move over in Britain. Tonight, Katy was playing on her slide with me when she pointed at a blanket laying over one of the couches.

“I-an.”

“You want Bryan?”

She nods her head yes, so I go searching for Bry. I find him playing Call of Duty on the XBOX Live with a bunch of friends. All I tell him is that Katy’s asking for him. “Guys, I gotta go,” he says. “I gotta go play with Katy. I’ll be back in a bit.” And he’s down the stairs. Just like that. He quit a video game for his little sister.

Can you tell I’m laughing while I write this?

What’s the blanket for? See for yourself:

That’s Bry, ridding the world of the R-Word for his sister, one stare at a time.

Investigational and Not Medically Necessary. Experimental. Or maybe you’ve seen the code “incidental.” Know what that means? It means the insurance company is just “Not Paying.”

I remember not so long ago when I couldn’t even imagine using coverage above and beyond what my insurance would normally cover. Those days are long gone. Now are the days where we try to figure out ways to get Katy the therapy she responds to best while fighting with our insurance company to get more and more varieties of therapy covered.

Aquatherapy, the single-most effective form of therapy Katy participates in each week? Experimental. Horse therapy? Investigational and not medically necessary. Speech therapy? We get 20 visits each year. Guess how many total speech therapy sessions Katy had last year. Over 50. Thank God most of those we’re able to get through her school district. Chiropractor? The co-pay is more expensive than the treatment.

It boggles my mind that insurance companies are unwilling to pay for a therapy now – even when that therapy has been prescribed by her pediatrician – when it may drastically reduce the expenses needed to care for her later on in her life. Yes, I know, I used the word “may” in there. It just seems to me common sense to dedicate more efforts to preventive care rather than reactive care.

Now, I don’t want to make it sound like I hate my insurance company. On the whole, our current insurance company has done more for us than any other I’ve seen. I’ve even got specific case representatives I call on for questions and approvals. I never call the number on the back of the card anymore. These case reps know Katy’s situation and call me all the time to check in on her. That’s nice to have happen with an insurance company.

I would recommend anyone with a special needs child talk to their insurance company about getting a personal case representative. It may take you a couple of hours on the phone to get it worked out; but it will end up saving you literally hours on the phone down the road with strangers completely unfamiliar with your situation.

So, what do I think: Is horse therapy “investigational and not medically necessary?” I don’t know. Like so many things you run into with a special needs child, sometimes it’s almost impossible to figure out why your child has suddenly made improvements. Did Katy begin to balance on her own following her first year of hippotherapy because of the therapy or because her body was just naturally getting stronger? I’ll probably never know.

But we’re not stopping now. In the video below, note a couple of things: First, yes, that is Brobee from Yo Gabba Gabba that she is holding. She usually has her pal Muno with her; but not today. Why is she holding a doll and not the reins? We’ve never been able to get Katy to grab the reins. She just balances herself in the saddle. Secondly, when she does the motion up and down with her hands, that’s “walk-on” in sign language. Katy has no interest in the horse standing still. None.

Last night, I walked into Katy’s room to find her trying to crawl UP her new play slide. I can’t even begin to describe how shocked I was. I took off running for the kitchen to grab my phone to try to get some video, ran back down the hall and proceeded to get footage of something that honestly brought tears to my eyes. I could not believe this was my little girl doing this.

Thinking I had just grabbed some of the best footage of Katy’s progress that I had ever filmed, I waited until I put her to sleep then went on my computer to upload the video to share with all of you. Now, imagine how furious I was when I found out the video was completely corrupted. None of it survived. To make it worse, Katy had ended up falling off the top of the slide before I put her to sleep and wanted nothing to do with it all this morning. I didn’t know how long it would be until we would even get her to go near the thing again.

Turns out, it only took a day:

If that wasn’t enough, I’ve even got the best film yet of Katy crawling to share with you, as well.

She’s making such good progress right now, we’re really wishing she still had a few months to go with her current group of therapists at her preschool. Unfortunately, the school year ends next Thursday. We want to thank every one of this incredible group of people that have helped our little girl achieve so much.

They will be sorely missed; but they will definitely not be forgotten.

I think the whole metaphor of trying to “climb the slide” is especially appropriate here. We’ve had so many times where Katy has taken one step forward and then slipped back again. There have been so many instances where she has said words to us once and we’ve never heard them again. Times when she tried to do something we’ve never seen before only to find her unwilling to even try it the next time. But through it all, she has kept moving forward. She has had steady progress up the chart.

And that makes seeing things like the videos above so special.

Ahp-ee mama ay!

Yes, in Katy speak, that is “Happy Mother’s Day.” But it is much cuter to actually hear it.  And now you can! See below:

We didn’t know how Mother’s Day was going to go this year. Shel came down with something Saturday night and her stomach was still bothering her badly this morning. Katy must have had it as well earlier in the day. She was dealing with a lot of stomach pain on Saturday morning. Were the two related? No idea, but it sure seems like it.

By late morning, though, everybody seemed to be feeling a lot better. We spent the day outside at five, count-em five, lacrosse games. Three for Bryan and two for Mags. I ended up missing one entire game helping a mother fix a flat tire. Having a manual to her vehicle would have helped greatly getting the spare down from underneath the back of the van; but we got the family on their way to a tire store!

From there, we celebrated Mom’s Day in tropical style. (For those of you that don’t know Shel that well, she loves everything Caribbean.) So, we had frozen margaritas in her new frozen drink mixer, she got two new mini palm trees and we had a seafood dinner on the grill. I think she liked it.

So, a Happy Mother’s Day to my wife, who is an incredible Mother to our small army of a family. It’s amazing to me that we are able to function as well as we do even with everything going on in our lives. Not only that, but she’s a successful business woman, as well. She amazes me every day and I’m thankful our paths crossed long enough for us to become a family.

And a big thanks to my Mom, Nana to all our kids, for everything she does for us. Even in the midst of recovery from knee surgery, she keeps trying to tell us to bring Katy over as often as possible. I know she’s still hurting, if she doesn’t want to let on to it too often.

And thanks to all the incredible Mommy’s out there who constantly put their children first in everything they do. You sacrifice a lot to get our kiddos the help they need and the support and love they crave. You’re all wonderful.

It is no secret that Katy loves water. She does aquatherapy every Wednesday not because we want to force her to do something. She does it because she loves it. Same goes for our pool. Katy wants to be in it every minute of the day during the summer.

Well, it just so happens that I was trying to get the pool open this weekend. I say trying because it’s been a very – well, trying – project this year. As you all know, we were in Memphis two weekends ago when a series of bad thunderstorms – and tornadoes – swept through the St. Louis area. (And a prayer goes out to the families in Millington, TN, where we stayed. A lot of that area is completely flooded right now.)

When we got back home, I couldn’t find one of our trashcans that Shel and I had been using in the backyard as we attempted to bring order to the madness. I just figured it must have blown down the street while we were gone. Uh, nope. As I got the filter running on the pool last Wednesday, guess what I found laying in the deep end? You have no idea how bad our pool was.

So Sunday, I’m finally starting to make some progress. Shel ran off to do some errands and I have Katy in the backyard with me. She sees the water and makes a bee-line for the pool. I naturally have all the gates closed and she can’t get to it; but I figure I’ll see what she does. So, I bring her on the pool deck with me.

She crawls over to the edge and I tell her “That’s far enough.” I sit her down over one of the built in seats on the pool and she puts her feet in. I’m fine with that. She’s done that in the past. “Katy. No closer.”

The kicking and splashing begin now. And now, the glint in my daughter’s  eyes has pretty much taken over.

I’m no further than a foot away when she decides to take her next scoot just a little too far. Down she goes. There’s a reason I put her over the built-in seats: She ends up with her butt on the seat and her face never completely goes under; but she scared herself silly.

And that’s exactly what needed to happen.

Too many times, I rescue my daughter from life lessons because of her situation. I realize there are times where it truly is necessary to do so; she wouldn’t understand what had happened to her. But this was not one of those situations.

This weekend, Katy was a typical five year old wanting to go swimming no matter what. Next time, I’m hoping she thinks about it a little more.

On Friday, Katy and I jumped ahead of our regularly scheduled appointment at Shriner’s Hospital here in St. Louis by a few months. Shel was getting concerned that we had stopped using Katy’s AFO (ankle-foot orthoses) braces and wanted to make sure we weren’t going to be hurting our little girl long-term.

A little background: We’d stopped using the AFO’s (ankle-foot orthoses) for the last couple of months for a couple of reasons. First, the foot and ankle problem that I’ve mentioned here in the past had continued to happen whether or not she had her foot in the brace or not. In fact, it seemed to be getting worse when we were trying to get her in the brace. So, I began to work with Katy up to 10 times a day doing stretching exercises with her ankle and her foot. She calls them her “ech-ses” which is about as much of “exercises” as she can get her mouth around. I tried them out of desperation almost after the botox episode at her neurologist. Imagine my shock – and there is no other word for it – when they seemed to have worked. From the day we started on these drills, we have not had one day of problems since then with her foot. Oh, she’ll turn it in still, but now all you have to do is tell her “Straighten your ankle out, Katy” and she’ll do it.

(You might wonder why I’ve never said anything about this development in this blog before. Well, I’m terrified of jinxing it. I’m only doing it now because it has everything to do with my visit to Shriner’s. If this post suddenly disappears from this site later on, you’ll know we’ve had a return visit from the problem.)

The second reason we’d stopped making her wear her AFOs is because we wanted to know just what difference they were making in her therapy. Well, we really don’t have a concrete answer on that, either. The only true recommendation we got on this was to try a hinged AFO instead of the solid piece brace she had used in the past. With the twisted foot out of the way, this might be a chance to develop some more strength.

And, quite honestly, there’s a third reason here: I’m not sure who to trust anymore when it comes to my daughter’s progress. Shel and I are already well aware that we know more about Katy’s condition than her doctors. It’s just such an ingrained issue to trust what your doctor says, and I don’t believe in the slightest that any of her doctors are trying to harm her. I just get the feeling more and more that Katy is a triangle that doctors are trying to pound into the square hole of what an average kid responds to for each specific issue we face.

We get to Shriner’s at 7:50 am and immediately head to radiology to get x-rays done on Katy’s hips. (Katy’s original issues with hip dysplasia are still the main reason we were accepted into the Shriner’s family.) Those done, we head back to the outpatient clinic and hang out in our room for awhile. Katy loves the mirrors in Shriner’s rooms. Memo to all doctors’ offices. Put full length mirrors in all your rooms. Kids (okay, Katy) loves them and it’s the only hospital she doesn’t freak out in.

For the next two hours, we’re visited by a nurse practitioner, and two therapists. At this point, we still haven’t seen her actual orthopedist, and this has been a recurring theme. We haven’t seen an actual doctor here the last three times we’ve been to Shriner’s.

We then get sent back to radiology to do another set of x-rays on her back. Katy has had scoliosis since she was very young. Along with her therapies to strengthen the rest of her body, we also began to take Katy to see a chiropractor over three years ago to see if anything might help. Evidently something worked, the diagnosis of scoliosis no longer applies to my daughter! Score one for the home team!

Anyway, we get back into the room and about 15 minutes later – lo and behold – we actually get a visit from her orthopedist, as well! And here’s the part where things just started to go wrong for me.

Katy’s orthopedist just didn’t seem interested.

She talked to the therapists and the nurse practitioner for a couple of seconds. Manipulated Katy’s feet for a couple of second. Told them – not me – that a hinged AFO would probably be okay if they wanted to try it. And then looked like she wanted to leave. I tried to get something more out of her, explaining the issues we’ve been facing with her foot turning in and what her therapists have said. You know what? I don’t know if she cared.

Look. I don’t expect answers any more. This has gone on for too long with us. I truly don’t expect anyone to miraculously say to us: “Your daughter’s problems with her deletion manifest themselves this way because of this X problem. And all we have to do is Y to fix it.” It ain’t happening.

But is it too much to hope for someone to care?

Is it too much to hope that one doctor will come upon Katy’s case and say “This is fascinating. Let’s take a closer look at this and see what we can come up with”?

God, I hope that’s not too much to ask for.

But it also reinforces the one mantra that keeps coming back to us again and again: I am my daughter’s advocate. My wife is my daughter’s advocate. It’s up to us to make things happen for her.

It’s always going to be up to us.

This weekend, my family had the opportunity to visit with a number of other members of the new Exceptional Family TV web community. Shel and I got to finally meet people we’ve been talking with through facebook, through blogs and through e-mail for months.

First, a big “Thank You” out to Susan for inviting us into your home and hosting us there for an entire day of filming. A “Thank You” to Nathan and Renee for your abilities as hosts for the interviews. A “Thank You” to all the other families there for being a building block in this new community of exceptional families that Susan and Nathan are constructing. There are so many times that Shel and I feel isolated – not physically from people; thanks to our kids, we are around families and friends non-stop – but isolated by experience. We become isolated by the simple fact of the life we now lead. For one weekend, at least, we woke up and had breakfast with other families who’s kids face similar problems to ours. We sat around a living room with a group of special kids playing in front of us. We had dinner together – all together – as one big exceptional family.

I’m dreading that I didn’t take photos. I hope Susan and the others have some shots or some footage I can add in later.

I said in one of the interviews about our family that I created this site in the hopes that just one family that gets the results of their genetic test will type that combination of letters and numbers that suddenly represents their son or daughter – 6(del)13q14.2q – and what they will find won’t be just a vast emptiness. That’s what we found when we first started searching for answers. Hopefully, someone who’s scared to death about what’s happening to their son, what’s happening to their daughter, what’s happening to the future they imagined with their child, will find a post like this and realize that their life as a family is just beginning. And that life – their family – can be exceptional.

Trust in hope.

todd

1) Show up.

2) Know what you want for you child.

3) Hope 1 and 2 are enough to get everything you think your child needs.

I hope you can tell that this is said with tongue firmly in cheek. Today’s meeting did not go badly. Not in the slightest. But there is so much going on in these meetings that you wish you could prepare better for them, or maybe have better goals for  your child.

I have to bite my tongue from calling out, “My goals for this year are to have Katy potty trained, walking and talking!” Nice goals all; but how in the hell do you get there from here? Better yet, are they even possible to reach? No, the goals set in these meetings are all based on day to day activities that help her function better in the classroom, in the gym and with her peers.

One surprise did come out of the meeting though. After our concerns and wishes were taken into consideration (integration into normal class rooms, music therapy continued and integrated into all classes), and all the teachers’ and therapists’ goals were added in, the head of the Special Ed Department at her new school recommended Katy stay at school for the full day rather than the half day that she’s had at Early Childhood Center for the past two years. There are just too many things we’re expecting her to do (or try to do) for her to accomplish in a half day.

The problem with this is, what do we do with the other therapies that we’ve provided out of our own pocket for Katy over the past few years because of their effectiveness? Physical (swimming) therapy, extra speech therapy, chiropractic care, horse therapy, all of these things happened during the time that will now be filled by the school day. We’ll need to figure something out before next August.

For today, though, I’m excited about the possibilities for my little girl. A little bit scared, as well. But after the leaps and bounds that she has exhibited in the past year, I hope I can dream a little.

I owe Katy that much, anyway.

Today, we meet with close to 20 teachers, therapists, school directors and administrators to make decisions for the next year of Katy’s schooling. Known as an IEP, or an individualized education program, this is mandated by the Individuals with Disabilities Education Act and determines our course of action, including Katy’s school as she enters Kindergarten next August.

We received a call from Marty, our regional administrator for Parkway, last week to ask if we could meet him for a tour of a different school than we had originally thought would be Katy’s educational home for the next nine years. We’d been wondering if this was going to happen. Let’s just say, we had heard from a number of people close to Katy that they thought she would be better off at another school than the one she was slated to attend.

So, off Shel and I went yesterday for our tour. Let me tell you, tours of this type are very different than the ones we’ve taken for the other kids in grade school and high school. When your main questions and comments concern whether or not the classrooms have doors or are open (Katy hates the sound of a door latching), are there ramps to all areas of the school, is the playground accessible, will Katy be integrated into a “normal” classroom as well, etc., it’s a completely different experience.

We left hoping it would be a good fit for her. It’s very much like it was when we she went off to preschool at the Early Childhood Development Center. We were scared to death as to how she would do. Early Childhood ended up being the best thing that could have happened for her and for us. She has thrived in school. Now, of course, we don’t want her to leave.

Unfortunately, that’s not an option anymore.

We just have to hope that development continues for the next stage. If it doesn’t work here, than we move on to other options.

Wish us luck!

Last night, I sat down to work on this site for a bit – trying to finish all the odd pages that just have “Under Construction” written on them. While I was working, I decided to do something I hadn’t done in a long time: I just plugged Katy’s karyotype into Google and let it rip. Imagine my surprise when a medical article I had never seen popped up.

For months, I’ve had Google alerts for all sorts of variations on “chromosome 6 deletions,” “chromosome deletion research,” “6del” and the like; but for some reason I had never entered an alert for “46,XX,del(6)(q13q14.2).” So, here I am, stunned to see this possible new information. Now, it’s not perfect. the deletion in the journal is actually 6q13-q14.1 – not 14.2. But that’s close enough to catch my eye.

(WARNING: BORING MEDICAL TERMINOLOGY EXPLAINED NEXT. “q” stands for the long arm of the chromosome; “p” would be the short arm. Specifically, what Katy’s karyotype shows is that she has a normal, complete set of chromosomes: “46”; she’s a girl: “XX” – a boy would be XY; that she has a deletion: “del”; it’s located on chromosome 6 – “(6)”; and that deletion is located on the long arm of the chromosome -“q” – from genetic markers 13 to 14.2, both on the long arm: the second “q”.)

After I pony up $40 for access to the medical journal for 24 hours, I realize that many of the articles being referenced in this new one are articles I was never able to find on-line before. So, I give ’em a shot. Low and behold, we’re in business! After about $150 more in access fees (God, you have to love medical research), I’ve got a few more pages of research than I had at the start of the day.

The only problem? There’s nothing new here.

There’s nothing here that I can bring to our insurance company and say: “See, this has had a proven affect on kids with chromosome 6 deletions. Please pay for this therapy!” I’m basically paying out a lot of money to confirm things I already knew. Such is the pattern, unfortunately, with my little girl.

This morning, Katy’s Nana – my Mom – underwent knee replacement surgery. So Papa, who usually takes Katy to school every day, was at the hospital and I took my little sunshine to class. Oh boy.

Do you remember the movie Mr. Mom? And the scene where he’s taking his kids to school for the first time and they keep telling him “You’re doing it wrong!” Katy didn’t use the words, but she let me know I was “doing it wrong” all the same. First mistake: I carried her into her classroom. See, Papa pushes her in a stroller. Didn’t seem like a big deal at the time. Someone should check my head. Second mistake: I didn’t just drop her off and leave. I tried to calm her down. You know, silly me, trying to comfort my daughter! Katy’s assistant, one of her therapists and her teacher finally – mercifully – just told me to leave. She was fine within seconds evidently. We, then, repeated this again at dismissal three hours later. Nana is no longer allowed to have surgeries or issues of any kind that involve a change in Katy’s daily schedules. 😉

Thankfully, on a serious note, Nana is doing fine. Visited her in the hospital later on in the evening and she looked great. She had just been given another dose of pain meds which may have had something to do with that. Nevertheless.

I feel like I’ve written a whole lot about absolutely nothing at all tonight. Sometimes I need to remember that we don’t have instruction manuals for the other kids, either. That sometimes there just aren’t any answers. It’s funny, my senior quote from high school was a tagline for a “Nike” commercial that said simply “There is no finish line.” Looking back now, that quote has even more meaning for me. Every fresh start is the end of whatever came before it. Every finish is just the beginning of something new. And we take one step to get to the next one to get to the next one. We can never stop trying to find answers for Katy. Every answer just brings more questions. But somewhere down the line, I’ll be able to look back and see not starts and finishes – not questions and answers – but simply an incredible life.

Trust in hope.