Accessibility

Even though Gracie is getting better and better at walking, she still tires fairly easily. It makes sense; her body does not work the way it should, so she has to work harder to do basic things like standing and walking. A few months ago, her OT gave us a referral to a durable medical equipment company, and we ordered her a new wheelchair/stroller. It came today and it is awesome! Gracie is sitting in it right now, watching “Sofia the First.” She loves it. I love it too – I can’t wait to go jogging and take her with me in her new stroller. It rolls very well, so it will be a big change from our old stroller that made me feel like Sisyphus.

We have come a long way since the first time we ordered an adaptive device for Gracie. When she was just a baby, her physical therapist wanted to brace her, practically over her whole body, to encourage proper posture. I resisted; it didn’t feel right to me. At that time, we didn’t know that Gracie couldn’t feel pain, but had we known my resistance might have been more well-founded (Gracie is prone to pressure sores). As it was, though, I was not ready to accept that she needed braces, and strongly resisted the therapist’s recommendations. Maybe it was just because she was so pushy and not very easy to work with. Either way, I found out a few weeks later that she was going behind my back and bracing Grace at daycare when I wasn’t there to object, so we fired her. Our new therapist worked with Gracie for a few months and again recommended that we try orthotics to keep Grace from twisting her ankles so much. Still hesitant, I eventually agreed. Chad was heartbroken because it reminded him of his childhood—he spent several years in a full body cast after extensive hip surgeries, and more years after that in braces, learning to walk. I was heartbroken because it meant she was different, she wasn’t normal, she couldn’t do it like everyone else.

Those little orthotics didn’t last long. Sure enough, she got wicked pressure sores each time we tried to use them. Plus, it didn’t stop her from trying to twist her ankles. In fact, she was pushing against them so hard her therapist was concerned she would fracture her tibia. She told us to stop using the orthotics. It was a relief to toss them aside, even though it meant we would have to look elsewhere for solutions to keep Grace from twisting her ankles. We tried taping instead, which worked for a little while. She soon learned to push through the tape, though, and again we were at a loss for what to do to protect her feet. It would make us cringe to watch her twist her ankles around, or put all the weight on the side of her ankle.  It is amazing that Grace made it through those years without an ankle fracture. 

By the time she was 2, we wondered how she would ever learn to walk. We knew by then that Grace had no response from her sensory nerves, so she was not getting any input from the ground. It explained her severe ataxia – imagine trying to walk without being able to feel the ground! We knew that if she would ever learn to walk, she would have to figure it out herself. The only thing we could do was keep encouraging her to try, so that eventually she might work out new neural pathways and learn the impossible task. We ordered her a reverse walker – like a little old lady walker but the open part is in the front, so it encourages proper upright posture.

The day the walker came was another sad day. We had to accept at that point that our daughter was (is) disabled. It’s not that we didn’t know before, but that shiny metal frame was a glaring reminder of her disability. It was awkward and cumbersome, and it was difficult for her to use it in our small house. We would try to get her to use it to take walks, but she tired out so quickly that we would end up carrying her AND the walker – a difficult task indeed.

Soon after the walker came, we found out about Gracie’s visual impairments. We regretted ordering the reverse walker instead of the regular one – a regular front-bearing walker would have also acted as a cane of sorts to keep her from falling down stairs or curbs. But at that point, we had already committed and Gracie was getting used to using the walker. We brought it to her old school for blind kids, and something amazing happened. In the school’s wide and brightly-lit hallways, Gracie learned to walk. She had plenty of room to navigate with her walker, and she formed those new neural pathways – she learned how to hold her body while she walked – and it wasn’t long before she ditched the walker and took steps on her own. It truly is amazing; without peripheral vision and without any input from her feet, she should not be able to walk, and yet she figured it out. That bright metal frame was the key to her success, and she still uses it. It gives her stability, so she can navigate the hallways at her new school without us worrying that she will lose her balance and take a hard fall.

When Gracie started at her new school this fall, we were so apprehensive. It is the school district’s only non-inclusive school, and I’ve been hearing about it since Gracie was a baby (mostly not-good things). I was afraid of sending my girl who has come so far to a school where everyone is disabled. I didn’t want to hurt her self-esteem – and I didn’t want to hurt mine, either. But when we got to the school for our tour, something amazing happened. The school is fully accessible, including the playground. The accessible playground opened my eyes. Grace can’t play on a regular playground unless there is someone right there waiting to catch her if she falls. But with the accessible playground, she doesn’t need a helper – she can’t accidentally fall off the side, she can get up all the ramps with her walker, there aren’t any ladders or ropes or all those other things that make regular playgrounds off-limits.

After that school visit, I realized that even though she’s disabled, she just needs a little help and she can get around like everyone else. A few pieces of adaptive equipment could change her world – could give her the independence we never dreamed of before. I started visualizing what adaptive equipment could help her in our house. I wanted to get her a frame for the toilet, so that she could start to learn to get her own pants off if she needs to go potty (she doesn’t have the balance to stand up and pull her pants down, but with bars to hold she might be able to do it). I wanted to get her a sturdy step-stool so she could use the sink without us worrying that the little toddler step-stool would slip out from under her, or that she would slip off the side. And, I wanted to get her a wheelchair – the kind that looks like a large stroller – so that she could go to parks, the zoo, and other places that require more walking than she’s capable of. This time, it wasn’t sad or depressing to order the equipment – it was exciting! My girl might be able to live a fairly normal life after all, if we only got her a few things to make it easier for her.

So today, the wheelchair arrived, as did the “handlebars” for the toilet. It wasn’t depressing at all! I’m excited to see if we can get her potty trained now – or at least, get her to the point where she can change her own pull-up. I’m excited to be able to take her places that were inaccessible to us before. I’m grateful for the opportunity to provide her a bit of normalcy. We have come a long way since that first sad orthotic delivery, and I’m so happy for her.

 

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Doctors

We got a letter yesterday informing us that one of our very favorite doctors (Gracie’s infectious disease specialist) is no longer at her practice and will now be working at a different hospital with mostly adult patients. My first thought was, “Well, I guess we’ll be going to that hospital from now on!” but then, as reason crept in, I realized that the hospital our fave doc transferred to won’t be able to treat Gracie’s frequent cellulitis and osteomyelitis, since it’s primarily a respiratory hospital. We will continue going to the lesser-known children’s hospital in town for run-of-the-mill infections, where Gracie has been treated enough times to have a solid history and loads of records.

I suppose it’s to be expected that doctors will come and go, but it was such a shock with this doctor. She is a solo practitioner who works under the umbrella of a bigger group, so it’s surprising to me that she closed her solo practice so suddenly. And, equally bothersome, she had surgery in November, so I’m worried that she had complications from her surgery, or that something happened as a result of her absence that jeopardized her and her practice. I hope she’s okay.

I have thought of her many times during our extended absence from antibiotics. I’ve wanted to reach out to her, just to say hi, but I was superstitiously worried that by contacting her I would somehow induce the karma gods to give Gracie an infection. I stayed away. Gracie’s health is more important than keeping in touch with a doctor, even one who is very nice and who I would hang out with socially if the situation were different. Now, though, I wish I had reached out.

The silver lining is that this particular doctor frequently told us we were one of her favorite families—told us Grace is one of her favorite patients. I know that if we needed her to at least weigh in on what antibiotics to use, she would. If Gracie’s pediatrician needed advice, she could still contact this doctor. I know Dr. D. hasn’t forgotten us, just like we haven’t forgotten her. I just hope she’s okay and this transition is good for her.

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School

Even though it’s only January, it’s time to start thinking about school for next fall. I wish we had started this early last year—I had no idea the school district personnel were off all summer along with the teachers, so I didn’t realize that having my first contact in late April was way, way too late. But this year, we’re in the system, and today I met with Gracie’s preschool teacher to discuss what services she will need at school next year.

What a difference it makes to have her already getting services through the schools! These past few months at the public school have been more than enough time for the teachers to get to know her and look past her very scary diagnoses. The meeting today went great. Her teacher and I are on the same page. In fact, her teacher is recommending that Grace get exactly the services I was trying to get her at the beginning of this year. But I didn’t know the buzzwords—didn’t know what to ask for—and it turned out to be a mess. Next year will be different.

Grace’s teacher is going to recommend that she get “intensive paraprofessional support” in the classroom as well as vision services, occupational therapy, and physical therapy. Her teacher very candidly said that Grace doesn’t need a special education teacher—she belongs in a regular classroom with regular kids. But, because of not feeling pain and the blindness, Grace will need someone with her in the classroom to help her get around. As her teacher mentioned, she also may need a scribe—there is no doubt that she will be able to complete the assignments, but she probably won’t write with a pencil on paper, so hopefully the para will be able to help with this also. Her teacher is also going to start the process of getting Grace keyboard training, which apparently takes a long time.

Grace’s teacher also told me that she is sitting on the IEP right now in order to protect Grace. She said there hasn’t been a day that Grace has been in the classroom that she hasn’t met all of the IEP goals. She explained that she knows Grace needs vision services and OT/PT, but they have never seen any behavioral issues in class, and if they complete the goals in the IEP without coming up with new goals that aren’t fake, Grace will have to leave the school. She said the closest thing to a behavioral issue they have experienced is that Grace tends to try to change the subject when she doesn’t know the answer. It’s so true! She does this at home, too, but we never connected it.

It’s such a relief. They really know her. They have seen everything I was trying to show them at the beginning of this year—that Gracie is a typical kid, very sweet and VERY smart, but she has these medical needs that are really unique and scary and they prevent her from learning like a typical kid. Even better than knowing her, though, is that they are going to give her everything I wanted for her at the beginning of this year. They understand that she’ll need that one-on-one support to get through the day, but also that she doesn’t need special ed. It is amazing and I’m so relieved.

I probably shouldn’t hatchet my counts before they chicken—after all, we don’t even know what school she’ll be placed at for next year—but the first step is done and it’s such a relief. Thank the good lord.

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Fingers

About 100 times a day, I tell Gracie to get her fingers out of her mouth. Each time I see her chomping on a finger, it makes my heart beat a little faster. She has done some serious damage to her fingers by biting, and nearly every hospital stay has been because of a bite wound gone bad. It’s not just one of those mom things to say when I tell her to get her fingers out of her mouth – it’s a seriously big deal.

Recently, we spent the day with a family with a 1 1/2 year old. All day long, that cute little boy had his hand in his mouth, and it was all I could do not to say anything about it. He can feel pain, so he’s in no danger of biting his fingertips off, but it was just as scary to me to see him with his hands in his mouth as it is to see Gracie the same way.

It also made me remember those early days of finger wounds, before we realized they were self-inflicted and before we had any idea Gracie couldn’t feel pain. She was behaving like a typical baby, putting her hands in her mouth and experimenting with her new teeth. But, unlike a typical baby, it didn’t hurt her when she bit her fingers. She never had that immediate cause-and-effect reaction of pain from the bites, and so her biting got worse and worse and the wounds got more and more serious, eventually resulting in infections, gangrene, auto-amputation, and antibiotic resistance.

Things are starting to change for our little Amazing Gracie. She is starting to realize the cause-and-effect that she never got as a baby. She is old enough now for us to reason with her, so when she bites her fingers and defiantly says she wants to go to the hospital, we can tell her that if she does, she will have to miss school, she will not get a sucker at school on Sucker Friday, she won’t be able to go to ballet or riding lessons, she will have to have her hand bandaged and won’t be able to write or color, and she won’t be able to play with her toys or sleep in her own bed or eat when she wants or watch “Sofia the First” or enjoy any of the other luxuries of home life. And – this is new and amazingly amazing – she is starting to get it. She is learning that even though she doesn’t feel the pain of her bites, there are consequences. They may not be immediate cause-and-effect consequences, but they are still there and they are dire.

I hope that someday I will not have to remind Gracie to get her hands out of her mouth. I hope that as she gets older she will be able to resist the impulse to bite entirely. I hope that she does not defiantly injure herself, and we can enjoy a few more months without a hospital stay and without antibiotics.

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Superstitious

Last year began with a hospital stay. On New Year’s Eve 2013, I took Gracie’s gloves off after daycare and her right index finger was red and swollen. Since she didn’t have a wound on that finger, I thought maybe it was injured and decided to take her to her pediatrician for an x-ray. The next day was New Year’s, and the doctor’s office was closed, but I called on the morning of the 2nd and made an appointment for that afternoon. By the time we got there, Gracie had a fever. My heart sank — redness and swelling with a fever is the hallmark of infection. Gracie was admitted that day and spent four days in the hospital.

This year is starting differently. It’s already January 5th and we are not even close to a hospital stay. Gracie has a couple of minor wounds that I’m keeping an eye on, but so far nothing that will require antibiotics. In fact, it has been nearly 3 months since her last dose of antibiotics. It’s hard to relax completely — we have been through too much not to wonder when the other shoe will fall — but the calm has been amazing.

Our whole family has benefitted from the relative normalcy. We are able to have a somewhat normal routine, without the constant interruptions of doctor appointments and hospital stays and medicine doses and wound care. The weight of the constant worry when Gracie is so unwell brings all of us down and stresses us out, sometimes to our breaking points. But now that she’s healthy, that stress is lessened, the weight is lifted, and we can just be a regular family. It’s amazing.

We have been through this too many times to expect it to last forever, but I am enjoying it while it does. We need it to last a few more months at least — Grace needs several months off antibiotics so they will maybe start working for her again. The longer she can stay off the medicine, the better. So, for Gracie, I’m keeping my fingers crossed, and looking for lucky clovers, and not letting any black cats cross my path, and collecting horseshoes. Good luck, Gracie!

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Reflections

It was the best of times, it was the worst of times. Or so penned Charles Dickens, anyway.

It’s the last day of 2014, and I am reflecting on all the events and happenings of the last year. Gracie had some major accomplishments—she became proficient at walking, when a year ago she could barely make it across the room. She has even been trying to run, although her gait is odd and straight-legged. Better still, lately she has been jumping—both feet off the ground, not holding onto anything, and landing without twisting ankles or breaking legs. These are major accomplishments for the kid we thought might never walk! She defies medical knowledge. Without peripheral vision and without input from her legs, she should not be able to walk, and yet she’s going farther and farther, getting more and more steady on her feet, and developing a more and more normal gait. She’s amazing.

Another major accomplishment happened on Christmas. Gracie wrote her name! It brings tears to my eyes to think about it. She has not been able to create representative drawings or write legible letters until very recently; I’ve always assumed she could not see well enough to translate the pictures through her hand. There’s also the possibility that the lack of sensory input prevents her from making the fine movements with her fingers necessary for writing and drawing. But, Amazing Gracie did it again. On Christmas, using a new notebook and pencil brought to her by Santa, Gracie wrote G-r-a-e. Okay, she forgot a letter, but for the first time ever writing her name it was impressive! Just to make sure it wasn’t a fluke, she wrote it again—twice! I’m so proud of her. I have never even seen her write a G correctly before; usually they are kind of upside-down sixes. She has that G down now, though, and a few more letters to boot.

The year had its downside, too. That whole business with Gracie’s special needs school was just awful, and it still upsets me to think about the way they treated us. Every cloud has its silver lining, though, and we really like the public school Grace now attends. Plus, they can’t kick her out. Gotta love America—we really are lucky to live in a country where she gets proper medical treatment and will get a decent education.

I look forward to the new year with optimism. Who knows what kinds of things Gracie will be able to do by the end of next year—maybe she’ll be running normally, able to write the whole alphabet, closer to potty training, doing things I haven’t even imagined yet. The possibilities are endless. Go, Gracie!

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Rudolph

rudolph

Yes, the red-nosed reindeer. It’s the most wonderful time of the year, and we’ve been enjoying all the old Christmas classics my husband and I grew up with. We especially like the original Rudolph, the story of the misfit reindeer who befriends a misfit elf and a bunch of misfit toys and ends up saving Christmas for everyone. It is a beloved classic, but especially so because it fits our special needs life so well.

The story of Rudolph is one we live daily as parents of special needs children (or as people with special needs). It is not our child’s fault that he or she is different – it’s not like anyone would want to be blind or disabled or not feel pain or have a shiny red nose. And yet, the other reindeer won’t let our children join in any reindeer games (like Monopoly!). Sometimes, instead of prejudicial reindeer, it’s the other parents who give dirty looks to our disabled children, or the schools that will not honor IEPs, or the discriminatory Santas that won’t let special needs kids on their laps, or the million other injustices that happen every day in this special needs life.

Rudolph’s story gives us hope. His disability turned out to be the very reason he was able to save Christmas. He did not discriminate against Herbie or the misfit toys. In fact, he helped them overcome their own limitations and reach their full potential. It turns out that we, as parents, have a little Rudolph in us too. We are guiding our children through life, helping them overcome obstacles, fiercely advocating for them, being their first and best champions. And someday, just maybe, our children might go down in history, too (like Washington!), by using their limitations as strengths and giving us a new perspective. I know Gracie will. She is going to change the world with her shiny red light of love.

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