A Growing Girl - Be Careful What You Wish For

I was having an e-mail conversation with a friend who also has a daughter with CP. I was telling her how my 15 year old daughter is still so obsessed with Barney (right now it’s Barney’s Great Adventure) and Nick Jr. type of shows. I commented on how we can’t even have a family movie night because she refuses to watch anything other than the shows she watches over and over (and over). It reminded me of an experience I had with her not too long ago.

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About 4 years ago I went to this event put together by a church I used to attend. They had a breakdancing competition with a live DJ and everything. I thought it would be a cool thing to bring my daughter to because there would be music (which she loves) and other kids and new people and I thought she’d like to see the breakers do their tricks. So I loaded her and her wheelchair up in the car and headed over there. (Read about what "loading her and her wheelchair up in the car" entails here.) I had been looking forward to going with her for the entire week and was excited! I thought this could be something fun we could do together that would make a great memory...something "normal" that typical families enjoy together. As soon as we got there, though, she wanted to leave. I mean, she wanted out of there immediately. I stuck around for a while, trying to spark an interest, pointing out the breakdancers flipping around, showing her the DJ booth. But she would have no part of it. She wouldn’t even give it a chance and I was so upset. I gave up, packed her into the car and headed back home, deflated. I was so sure that she would enjoy it and that it would be something fun we could do together, maybe meet some new friends, create some new memories. I was crying by the time we got home because I felt like I was robbed of a dream. I really thought I was going to be able to do something “normal” with my daughter.

After we got home and she was safe in her bed I really lost it. With tears rolling down my face, I just kept screaming up to the heavens, “PLEASE! JUST LET HER GROW UP A LITTLE!” “WHY CAN’T SHE JUST GROW UP?!?” I wanted her to grow out of the Dora and Barney kiddie stage and move on to the older kid stage, the one where iCarly is cool. I wanted to be able to take her to see a breakdancing competition. I wanted to be able to have a family movie night and watch a Disney princess movie or Monsters, Inc. That’s one of my many fantasies - having a family movie night. It sounds kinda lame but what can I say? I’m just being honest here. But we can’t do that because the baby shows she watches don’t really make movies.

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Thinking back on it I wonder, “What am I asking for?” What will her emotional evolvement come at the expense of? Today, my daughter is 14 and shows no indication of having an interest in boys. (And please don’t tell me to be grateful for that) She doesn’t feel sad because she doesn’t get invited to birthday parties or doesn’t have girlfriends to chat on the phone with (not that she could). She is perfectly content spending her days with her parents, brother and other family. If she were to “grow up” as I begged for, and grow out of the kiddie stage, would her desires change as well? Watching shows like iCarly may only serve to show her the things she doesn’t get to do like sleepovers or cheerleading. My asking for family movie night may bring sadness into my daughter’s heart because she may begin to long for the affection of a 14-year-old heartthrob.

In “The Monkey’s Paw” written by W.W. Jacobs, three wishes are granted to the holder of the paw but not without an enormous price. A mother who lost her son wished him to come back to her and he did. After he had been buried for a week. She got her wish but not in the way SHE pictured it.

I have decided to never again wish that my daughter would just grow up a little because she may end up paying a very high price for my charges.

Vanity & Botox In The Disability World

I have a certain amount of vanity for my daughter. Okay, a tremendous amount! She’s got a beautiful face, gorgeous hair and a skin tone that the New Jersey Tan Mom would commit second degree murder for. She’s bright and funny and loves her family. People at her school, people in the mall, people at the doctor’s office tell her all the time that she is so pretty and mommy dresses her so nice. And you know what? They’re right!

Forgive me for feeling an extraordinary amount of jubilation when people tell her how beautiful she is. Pardon me for having a bit of a cockiness about me when we’re at the mall and people walking up behind us pass us, then look back to see what the girl in the wheelchair looks like and they see that she looks like any other kid, but with extraordinary beauty.

Medically speaking, I would say she’s needed a minimal amount of intervention considering the trauma she sustained when she landed on this planet via C-section. Yes, she needs physical, occupational and speech therapy. Yes, she’s non-verbal and non-ambulatory. Yes, she needs hand-over-hand assistance with everything including playing. But she doesn’t have any heart problems; her hearing and eyesight are perfect; lungs, kidneys, intestines, bladder – all good in these departments, too. Her hips needed a little surgery in 2007 but are perfect now. So forgive me if I am a little conceited about the fact that she’s never needed any other special type of therapy or intervention for her well-being. It feels great going in to the doctor’s office (any doctor) and responding with, “She’s doing great!” when asked, “So how IS Miss Brianna doing these days?”

And you really must forgive me for being sad and finding it almost impossible to not cry when the doctor tells me that I should think about starting botox injections in her hamstrings and ankles. You see, her muscles are getting very tight and currently, she can’t straighten out her legs completely. And if we don’t address this now, it will only get worse. It will get to the point where she is in a permanent crouching position. Of course we don’t want that! And I know that there can always come a time where we have to do something new because she is getting older, bigger, heavier.

KNOWING she has CP and a myriad of secondary conditions that can (and most likely will) worsen does not make it any easier to hear it confirmed out loud.

Family Fun – How Barriers to Access Can Ruin A Vacation

So we went on our first family vacation. I was very excited; maybe almost more so than my daughter, if that’s humanly possible. And now that I’m back, I see it wasn’t all perfect but I’m definitely glad we did it.

A Family Resort

We went to Smuggler’s Notch which is a family resort in Vermont. I chose to go there because they have an adaptive program that the girl would be able to enjoy. While at camp, she went kayaking, swimming and swung on a Giant Swing, to name a couple things. Oh, she was also serenaded by a friendly pirate! The grounds were beautiful. Whoever did the landscaping should be commended. I saw the most unique and interesting flowers and bushes that threw off such a beautiful aroma as you walked down the different paths in the Village Center, which is the main resort area. The condo we stayed in was mostly wheelchair accessible. It was a very nice-sized apartment with comfortable beds. It was supposed to have a wheel-in shower but instead we got a sauna tub. Lifting her in and out of the tub would have been totally impossible if not for my strong hubby. One of their on-site restaurants, Morse Mountain Grille, is absolutely AMAZING. Everything we tried tasted gourmet. Even their white pizza was better than anything I’ve ever had in NY. Needless to say, we had most of our meals there!

Disability World

So what’s this post about? In the midst of all the fun and beauty, it struck me (again) how able-bodied folks can be so clueless to the fact that the tiniest little thing, like a 1-inch gap, lip, crack, whatever, in a sidewalk or doorway can completely block a person who is non-ambulatory (like my daughter and by extension, us) from entering a building, crossing a sidewalk or enjoying family time. I can’t really blame folks who don’t live in the Disability World for not knowing. It’s just not a path you’ve walked (or rolled in, so to speak) so I can’t expect you would know it without being educated on it. That’s what I’m here for.

Barriers to access are anything that block a person from accessing a public space. This can be something as simple as a single step into a building or narrow pathways in a department store to larger barriers such as no elevator in a multi-level building or the lack of a pool lift for wheelchair-users at public pools. 

Use Your Imagination

To all you walkers: imagine if you were on your way to a beautiful exotic island where there were gorgeous sunsets and the most awesome poker tables (for those of you readers who don’t really care for sunsets). You would be with your favorite people and you all had planned what you would do every day and every night together. You have all been looking forward to this getaway for so long and finally the day has arrived. You watch out your window as the plane roars down the runway; you’re all so giddy with excitement you can’t stop talking about what the first thing you’re each gonna do is. Finally, the plane touches down; you all grab your carry-on’s and walk towards the front of the plane where the pilot waves you off to your destination. You turn to disembark and notice that the jet bridge is about 3 feet away from the plane’s exit doors. You see, the jet bridge is old and doesn’t quite reach the plane but it’s allowable because it was made before the laws changed that made it mandatory that all jet bridges reach the planes’ exits. Sounds a little wonky but that’s ok because as long as you can step across, you’re fine…Wait a minute! You can’t reach it! Your legs are too short! Your loved ones are all taller than you are and are able to walk across. You can’t cross the jet bridge; which means you can’t get to the island; which means you can’t see the sunset or play poker. Your loved ones are all going to be able to do this without you. They feel bad you’re getting left behind but surely they can’t NOT go just because YOU can’t. You’re gonna miss out on everything all because of the damn jet bridge being JUUUUUST a little too far for you.

A Huge Barrier

The Village Lodge at Smuggler’s housed the on-site Ben & Jerry’s ice cream parlor, pizzeria, deli and pub for the resort’s guests. If you didn’t want to leave the resort and wanted a slice of pizza or to take the family to get ice cream after a long, hot day filled with fun activities, this was where you wanted to go. Except my daughter couldn’t go there. There is a walkway leading up to the door but there is a 1-inch lip at the end of that walkway that her power chair cannot get over because of its mechanism on its underside. Even if the walkway was made to end flush, once you got in the doors there are stairs galore. Normally, any public accommodation must be made accessible to all except if those changes are not “readily achievable” or when “they are not easily accomplished without much difficulty or expense”, according to the Americans with Disabilities Act (ADA). To read more about the ADA click here.

Not knowing about the barriers to access, we planned to go to get some ice cream with the kids. When we realized we couldn’t get in with the wheelchair it was upsetting, to say the least. The girl didn’t even want the ice cream; she’s just the type of kid that loves to do family things and she wanted to go in to the ice cream parlor with her mom, dad & brother. Instead, dad went in to check what he wanted while mom waited outside with the kids. When he came out, mom went in with his order in mind while he took his turn waiting outside. I felt excluded, hurt, left out, ignored. I felt like an outcast, an outsider. Like I didn’t belong. And I wasn’t even the one in the chair. The biggest part about this is that she knows that the reason we couldn’t go in was because of her wheelchair. I will be honest. I was way more upset than she was. But I wonder how many other families that have gone there for their adaptive program have also felt the way I did.



Maybe sometime soon every jet bridge will reach the plane’s exit doors everywhere, mandated or not.

A Little Girl's Thoughts & Dreams

I've often wondered what my daughter's thoughts look like. You can read a little about her here. Are they pictures strung together like the symbols on her DynaVox (her communication device that's something like a tablet but a little bigger and works similarly to web pages)? Or are they flashes of images just randomly popping up, not necessarily having anything to do with each other? I wonder if she jumps from thought to thought, like she jumps from one thing to another totally unrelated random thing in waking life. For example, using her DynaVox, she will say "snack cart" but not elaborate so I'll have no idea what she was just thinking about. Next thing she does is play a song off her MP3 list, so I guess she wanted to listen to music. Then she'll say she wants to play but then the computer will catch her eye and she remembers she already asked to go on the computer. Or maybe her thoughts are like a slide show. Or just sight words.

I also think a lot about her dreams. There was only once in her almost 16 years that she woke up screaming and crying really hard and I thought maybe she had had a nightmare but of course I have no way of confirming that. When she goes to sleep I'll say, "sweet dreams" and she smiles. I've asked her in the mornings if she had lots of sweet dreams and she always smiles and nods her head yes but I wonder: did she? Does she even know what dreams are? I mean, EVERYONE has dreams, right? Isn't that what they say? So I guess it's safe to assume that she does too.

Photo is from 2003

I can't help but wonder if in her dreams she can walk and talk. I was reading something about a teenage girl who has autism. She is non-verbal too but she spells and has found her voice through writing. Someone asked her if she is autistic in her dreams and she answered that sometimes she is and sometimes she isn't. When my daughter was about 5 or so, I had a dream that she was laying on the floor, floppy, because she had no tone to her body. Then just all of a sudden, she got herself up. She just stood up. It was so realistic because in my dream we were in the house we were living in at the time and everything looked exactly how it did in real life. I woke up right then and
                  I.
                    Was.
                        Devastated.
For that split second, I KNEW what it felt like to have a regular ol' kid and for the second time in her life it was yanked away from me. You know that image of someone standing on a rug and somebody else sneaking up behind him and pulling it out from underneath him? Yeah, that's what waking up from that dream felt like. 

I wonder if she has dreams like these. If she does, I would have to say that they don't devastate her the way mine do to me because she is always smiling when she wakes up. I mean, ALWAYS smiling. I think she knows a secret and just hasn't shared it yet. I can't wait to find out what it is!

A Little 411 On The Girl - Living With Cerebral Palsy

My daughter suffered oxygen deprivation during birth which caused a permanent injury. She now lives with quad athetoid cerebral palsy (CP). Athetoid CP means her tone (the tenseness/softness of her muscles) is mixed. Her trunk has low tone mostly and that's partially why she is unable to sit up unassisted. But sometimes it has high tone, like when she arches back. She usually arches when someone is trying to get her from one spot, like her wheelchair, to another, like her bed. She thinks it's hilarious to see someone struggling. No, really, she really cracks up at this. And the more you say things like, "Oh my God; wait!; stop moving; Oh, no, you're going to fall!", and the more you struggle to get her to cooperate with you, the more she cracks up. If it wasn't so dangerous (you know because falling on the floor & cracking your face open is usually not a good thing!) it would be kinda funny because she's got this crazy laugh. It goes from being loud and honking like a goose to absolutely silent with her mouth wide open and all you see is her shoulders bobbing up and down (I refer to it as the "shoulder shake").

Wings are in "landing mode"

The mixed tone is also in her arms and legs. Sometimes they are very stiff and it's hard to get her to relax her elbows and shoulders. Her arms jut straight out from the sides of her body and when she's in her wheelchair this can be dangerous because she can get them stuck behind walls when we're coming around corners or in doorways. They look like wings on an airplane or bird and I tell her to "bring the wings in, no time for takeoff now"! She has punched a few people from time to time, including me. That's kinda funny when it happens to someone who is annoying, not so much when it’s me. When we're in a crowded place, like in a mall, she could be sitting nice and quiet then all of a sudden she'll get excited about something and her arms will fly out to her take-off position and if there's anyone near her, their butt's gonna get smacked! Ahh, I recall the stunned faces of many a stranger that have turned to see that it was only a 14 year old girl on wheels who has just violated their nether region! That can be pretty hilarious too. I just start to get a little nervous when the person near her is a man and he's facing her because his family jewels are in the line of sight and that can be pretty awkward!

Captain's Log - Medical Log Book To Track Doctors' Appointments

Do you have a medical log book for your kids? If not, you should seriously consider starting one today! I think this is my #1 mommy suggestion because it’s important for all kids – not just those that have special medical needs like my daughter and my son with more than just a pediatrician to keep track of. Think about it. How many times have YOU changed doctors over the years? General practitioner, OB-GYN, other specialists…and how many tests have you gotten done? Blood work, x-ray, MRI, etc. Unfortunately our health care system is not digitalized yet so our doctors can’t access your past medical history unless you know who that doctor was, where they’re located and their fax number in order to request previous records. And that’s only possible if you even REMEMBER if you’ve gotten that test. You can’t make a request for a record at some doctor’s office if you don’t even recall having a record!



My son's Medical Log Book

So, now that I’ve got you wondering how many doctors you’ve forgotten and how many work-ups or scans you don’t recall, let’s not let that happen with your kids! I went to Wal-Mart and got a cute 3-ring binder so that I can save all of my son’s doctor visit records in it. What I do is, at every doctor appointment I request a copy of their notes (we see them write down everything from the temp, BP, height and weight to the nature of the visit and their recommendations). Then, I punch holes in the paper and stick it in the binder! How simple! There are some offices that won't give you a copy so I keep track of every appointment on my “Log Sheet” where I write in the date, doctor/location, and remarks for quick access. This way if I’m looking for the last time I took him to, let’s say, his pediatrician, all I do is check the log for “Pediatrician” and see the date. Then I’ll know exactly where to look so I don’t have to flip through the whole binder (which can get pretty big!) If you’re super organized (like myself; I love the office aisle in any store) you can use section tabs for different things like “pediatrician”, “GI”, “health insurance records” or whatever your organizational heart desires!

 

Aside from the fact that it’s fun to do (you see how exciting my life has become?!?), there IS an alternate reason to start this project. You just never know if something will go wrong and you need to look back at your child’s history to see when it started. Or maybe your pediatrician missed something that she should’ve caught and now you have the notes to prove it.

Enjoy your trip to Staples!

Games Day - Fun With Adapted Sports

Today was Games day at Mitchell Field in Nassau County and boy what a gorgeous day it was! There was no humidity, the sun was shining and a light breeze kept us happy while we waited our turn at each event. My daughter's favorite event (which is actually not an event but a fun activity to do in between events) is the swing. There is a huge swing that you can roll a wheelchair right onto and people who can't sit on a typical swing can still enjoy the twisting and turning of a crazy ride. Therapeutically speaking, it's referred to as vestibular motion. "Entertaining-ly" speaking, it's just plain FUN!

I have to say that I truly enjoy going with her. Not only because she gets to do fun things like ring toss, precision throw and the 40m dash (her favorite by far) but I get to feel comfortable. I'm not so worried about taking too long to do something, like giving her lunch, or being concerned about her wheelchair getting stuck or in the way of someone. Everyone else there is just like me. I fit in. I'm surrounded by people who know exactly how I feel about certain things without having to say it. Yeah, today is supposed to be about her but as it turns out, it's about me too.

Today was a great day!