Tag Archives: children with disabilities

All I want for Christmas

Does anyone else dread being asked what their kids want for Christmas?

The answer, in regards to my four year old girl, is easy. EVERYTHING. If there has been a commercial for it, she’s all about it. It doesn’t matter if she knows what it is – it’s on TV, and therefore she must have it.

With Katie, it just isn’t simple. Most ten year old girls want all sorts of things – makeup, nail polish, sparkly anything. Katie still loves to watch the TV shows she watched when she was two and three years old. I try to give her a chance to watch the latest Disney shows and boy bands, but her response is usually to start screaming. Smart kid.

Anyway, people ask me what they should get for her. I have to say, I hate this question. I hate it. I hate that I don’t have many good answers. I can tell people her clothing sizes. I can direct them to the baby toy aisle – anything requiring fine motor skills is out of the question. I can confirm that she still watches Sesame Street, and what videos she has.

I want more for her than this. I know there must be more out there that she would love. I hate that I can’t get it for her, but even more, I hate that I can’t even figure out what it is.

People mean well when they ask this question, but I’ve pretty much stopped answering it. I don’t have answers. This has actually led to a good thing. Now more people are brainstorming about what Katie might like. More people willing to take a chance on this or that toy. And that has resulted in Katie getting a few things I never would have considered picking up for her.

One year, her teacher gave her a singing dog. Like, LOUD. This cheesy critter dances in place and howls to the music. It has been adapted so that she can use a big switch to make it go. I never would have pegged this for something she would want.

She loves it.

So, this is what Katie wants for Christmas. She wants you to think of her, and to use your imagination. Maybe you’ll hit on something really great.

Mini vs. Mickey – the rematch.

A couple of months ago, I found out that there was a newer, more advanced, more awesome version of the Mic-key button out there. It’s called the Mini-One. The Mini doesn’t stick out as far, so it makes life easier if you need a body brace, or belly crawl, or have a kid who likes to grab them and pull them out, etc. Naturally, I wanted one.

I jumped through the necessary hoops (why are there always hoops?), and got the new awesome thing for Katie. And… well, for starters, the largest diameter available in the Mini is a 14 French (4.6 mm). Katie had an 18 French (6 mm) button before. No big deal , but it did mean her stoma needed to shrink around the new button, and in the mean time it was going to be a bit floppy. Also, because the diameter is smaller, it is more likely to clog. I found this out the hard way. Katie’s Prevacid simply will not go through this tube. It clogs every time. I resorted to giving her this orally. It isn’t supposed to be chewed, but at least she was getting some of it.

Then I decided we had been better off with the old button. So, I tried to switch it back, but I didn’t have much luck with that. (See previous post for more on that.)

This week, it occurred to me that I could check with the doc about changing the button back. If it would require another surgery, that would be a deal breaker. But perhaps there was yet another piece of this equation that I didn’t know.

I called Katie’s gastro, and again was referred back to the surgeon. So, I talked with the the surgeon’s nurse, and she said they could probably dilate her stoma to get the larger button in. Woo hoo!

Well, okay, not totally woo hoo. Stretching out her stoma could be uncomfortable. So, I felt kind of crappy about that. But, having a button that fit her better overall, that did what we needed it to do, that didn’t sag – that outweighed the pinch of making the switch.

We met with the surgeon (again), and she asked about why we wanted to change back. Then she said that the last hospital she worked at had unilaterally sent all their Minis back – they hated them. So, I guess it isn’t just me.

Some people love the Mini. I think it has some neat features. In our case, though, the older technology is what works best.

There and back again.
There and back again.
No tears over switching back.
No tears over switching back.

Can you hear me now?

My daughter does not have a hearing impairment.

Katie uses a wheelchair. She rarely speaks – when she does, it’s either ‘yeah’ or ‘oh no’. If she feels apprehensive, she cries and/or screams. She feels apprehensive a lot.

Her hearing is flawless.

People are frequently intimidated by Katie and her complex wheelchair. Some people just give her a wide berth. But more often people are falling all over themselves to display their acceptance. Yeah, it is kinda cool.

When people who don’t know Katie want her attention, they frequently get right down in her face. Then they shout.

“HI, KATIE! I’M SARAH!”

Well, alrighty then. Katie might engage with this behavior, but more likely she’ll try to turn away from them, or yell back, in her own fashion – I would, too.

Katie has limited ways of engaging with others socially. She has preferences in how she’s treated. She enjoys being with a group, if they respect her boundaries and do something she likes.

All of this means that she’s just like anybody else.

When was the last time you met someone new? Were you a little apprehensive? Not sure whether you should offer to shake their hand, wave, hug, whatever? You probably opted for the least invasive greeting. You probably did not get six inches from their nose and shout, “HI! I’M ANGIE!!!”

The response probably wouldn’t be positive.

People with disabilities can be a bit intimidating, but they are just people. Just like meeting a friend of a friend at a party, you need to watch for their cues. Do the social dance. My daughter dances very well. Assuming you don’t shout at her.

Is this how you treat everyone?
Is this how you treat everyone?

Brush, brush, brush your teeth…

Today’s little product review… the Surround toothbrush

A couple of months ago Katie’s dentist gave us a free sample of a Surround toothbrush. I set it on a shelf and abruptly forgot about it.

I came across it the other day, and decided to give it a go. This is a toothbrush with bristles angling in on both sides. The idea is that you can brush your (child’s) teeth more thoroughly in a smaller amount of time than you need with a regular toothbrush.

Well – it might work. For someone. If that someone has a fairly large mouth, and is happy to open it to get their teeth cleaned.

Katie is not that someone.

I normally use a toddler size or just slightly larger brush to get her teeth cleaned. We also count when we do this. Katie loves counting, and it makes the task more tolerable for her to know that there will only be a few more seconds.

Katie gave the Surround brush a very definite thumbs down. While the concept might work for some, it is simply too big to wield in my ten year old’s mouth. I also could only move it back and forth on one plane – like sawing. Otherwise, the bristles would be down on her gums. Moving the brush around – a little here, a little over there – seems to make the process more acceptable for Katie. We’re going to stick with the little Snoopy toothbrushes from Target.

That said, someone in a different situation might find this brush useful.

The Surround Toothbrush
$5.00 + shipping at www.specializedcare.com
or free, if your dentist gives you a sample

Time saver or space waster?
Time saver or space waster?
In case you're traveling. Or if you want to call and order more. I don't.
In case you’re traveling. Or if you want to call and order more. I don’t.

Can I get that with a side of Fragile X…?

I have a group I get together with occasionally to talk about various ethical situations. You know – for fun. Recently we’ve been talking about something called PGS. This is a screen that can be done on embryos prior to being implanted into their would-be mommy. It can identify genetic anomalies. It can also tell sex and potentially even things like eye color and whatnot, although most clinics are taking a clear stance that they won’t let patients order up little blue eyed blond boys.

We have been trying to figure out the ethical stance on testing embryos for genetic anomalies prior to in vitro fertilization. It’s a muddy question. If you know an enbryo has the genetic code for a disorder that will let the child live about two painful weeks before expiring, should you weed that one out? To me, that seems pretty reasonable. Do you pitch every one that has trisomy 21? For me, that’s tougher. I know people with Down syndrome. Bright, beautiful, sweet, WHOLE, happy people. I think our world would be diminshed for the lack of them.

I’m going to add a quick aside here. This isn’t meant to be a discussion about abortion. When couples have in vitro fertilization, it is common that some embryos won’t be implanted. Wherever you happen to stand on that, this info is just meant to be background for what I’m trying to get to here.

That said, my real question is, why are we asking this? What do these would be parents think they are getting?

Parenting any child is hard. Being a parent means making a huge shift in your life, putting yourself, your dreams, your whatever, on the back burner, and finding a different kind of joy in the amazing little person you brought into the world.

If you sign up for parenting, you are contracting it in blood. You might have a child with a disability. It might be something that a casual observer doesn’t notice. It might keep you from going and doing the things you did before. It might result in your child dying.

You might have a child with no problems at all. Happy, healthy, gets good grades.

He might fall out of a tree.

He might break his neck.

He might get cancer.

Are you going to stop parenting because it got harder?

Odds are, no. Odds are, you will handle whatever your kids need, and you will adapt as their needs adapt. People don’t come with guarantees. Don’t count on a test ahead of time as the decision point of whether you want to be a parent.

Parenting is like enlisting in the army. If you aren’t prepared to do the tour, don’t sign up.

Katie's buddy Rylee.
Katie’s buddy Rylee.

Thank you. Now shut up.

Shortly after Katie was diagnosed, I was given a copy of the essay, “Welcome to Holland”. Odds are, you’ve read it. If not, go here. I’ll wait…

So, the Holland essay gave me a little comfort in the early days, and gives the overall message that things will be a little different, but they will still be cool.

Later, I read a piece called Schmolland. Read it, right? If no, you should – it’s great.

This one also spoke to me at a time when I was really feeling like I lived on my own planet. Play dates? No! Stress! Invites? What are the circumstances, will there be an easy escape, will it be during nap time, is there room for a wheelchair, is there a place I can change a four foot tall person’s diaper?

I still feel like I’m from my own planet sometimes, but much less than in the past. I know so many parents now, it’s like we made our own country. I have learned, finally, that this is normal. Not “normal” (do you see air quotes?), but really, just normal. I worry about my kids. Both of them. I rejoice in both of them. They give me utterly different causes for stress, and also very similar ones.

Every once in awhile, someone thinks they are complimenting me by saying something like, ‘I couldn’t do what you do! You’re so strong!’. Have you gotten this?

If you’re one of the people who says this, let me just say 1. Thanks. and 2. Shut up.

Parenting is not for wimps, and it isn’t for people who do things halfway. Are you a parent? Do you believe you couldn’t do it if your kid needed something more, or different, or whatever? Give yourself more credit. If you are faced with a challenge, you will handle it.

Don’t sweat the small stuff

Okay. No food after midnight. Check. No milk after 2 am. No problem. No water for three hours prior to the procedure, and morning meds are okay, as long as there’s no more than an ounce of water with them.

Check and check. And to make life a little easier, Katie is actually sleeping in this morning (after being up at 2 am for no reason that I could find). So, overall, this is starting out smoothly.

So why am I stressed?

This is not a big deal. I know I’ll look back and say, ‘That was cake.’. Of course, when I do, it will most likely be because we have moved on to dealing with something harder.

When Katie was born, we didn’t know she would have a disability. But she did have some jaundice. She had to spend an extra day in the hospital under the lights, and then she was on something called a bili blanket – think ‘baby wrapped in cumbersome neon blankie’, and you’ll have a good visual.

At the time, I was really stressed out by that. It was hard to hold my baby. I was a new mom, trying to get the hang of breastfeeding, get the hang of not sleeping any more, heal, and on and on.

Yes, yes. The horror.

But at the time, it was horror for me. It was stressful. I wanted to get rid of the stupid apparatus and move on with our beautiful new life. I had no idea that our beautiful new life would include days, months, years of things that would make that blanket look like the briefest of afterthoughts.

So, this morning I’m taking Katie in for her first set of Botox shots. It’s stressful, because we’ve never done this before. I don’t really know what to expect. It’s a PROCEDURE. It involves drugs. It involves a toxin, for goodness sake.

I know that there will be a day very soon where I will ask myself, ‘Why was I stressed about that? That was cake!’.

But I also know that part of that realization will come when we face a bigger challenge. So, for now I will be happy to indulge myself by stressing over the little things.

Tough decisions

I just scheduled my daughter’s first set of botox injections.

This is a common treatment for spasticity, and it’s been around for years.

Still, it was a hard decision for me. We’ve been trying to keep her muscles under control with oral meds for years now. We had some success in the beginning (although she slept all the time), but for the last couple of years, we’ve just been kidding ourselves.

I can’t get her safely into a sling, because she hyperextends and there are arms and legs and head everywhere. It takes three hands to keep her from fish-flopping out, and another two to run the Hoyer – the only lift Medicaid will cover, at least in my state. So, I lift her. She’s fifty five pounds now, and four feet tall. And she isn’t helpful. And she’s STRONG.

So, I’ve been slowly realizing that we need to do something else. So, we tried a different med – it made her throw up. We are trying another one – her doctor just increased the dose, because it wasn’t doing anything.

The research I’ve done – and it’s by no means exhaustive – goes something like this: Prescription. Stronger Prescription. Botox. Baclofen pump. Dorsal Rhizotomy.

After dorsal rhizotomy, I had to stop reading for awhile.

Her physiatrist has suggested the next step might be a Baclofen pump. I’m leary, because the oral Baclofen has done very little for her. We may try it at some point, anyway.

There is a degree of guilt with every decision I make. Am I choosing this for her sake, or for mine? Is this to treat her, or to manage her?

I think the answer is a combination. Katie can’t tell me if she’s in pain, but it’s a pretty good guess that she is, at least some of the time. You can’t sit around with your muscles flexed all day long and not get sore. You can’t be thrusting out of your chair looking for the chance to stretch without it seriously getting to you.

On my part, I can’t keep lifting more and more, taller and taller (I’m 5’3”, and don’t have much vertical leverage on her at this point) without seriously hurting myself. Selfish? Yes. But hurting myself isn’t really my concern, it’s more like background noise.

The real concern, the real thrust behind that horrible phrase, “caregiver convenience” is Katie’s best interest.

What would happen to her if I couldn’t care for her anymore?

We have family that would help, but how would they do it? How long would it be before they were injured, too?

So, we need the mechanical advantage. We need to be able to get her into a lift comfortably and safely.

We’re talking with vendors about what kind of lift system might do the trick. So far, three children’s hospitals have given me the equivalent of a shoulder shrug. Shriner’s said there isn’t a solution for that, but if you come up with one, you’ll be rich. (As if I wasn’t already motivated!). Gillette Children’s said the solution is not in the lift, but in controlling her tone. That’s as good an answer as I’ve gotten so far.

So, we’re going to try Botox.

If that doesn’t help, we’ll try the next thing.