Welcome To Holland

This was written by Emily Perl Kingsley in 1987. There is no better way to describe the experience of becoming the parent to a child with special needs:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Assistive Technology Assessment is an Important First Step

Because of technology, an 11-year-old girl who can’t physically hold a pencil is on the honor roll. If not for a $200 word processor called a Forte who knows where she would be! Not only does it give her the ability to keep up with her fast-paced 6^th grade class, it’s cool and sleek so it gives her a “coolness factor” among her peers. I would argue these are the top conditions that need to be met when picking out appropriate technology for individuals. (You can read that article here: http://www.azcentral.com/news/arizona/articles/20131216assistive-technology-aids-special-education.html?nclick_check=1 )

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It’s important to remember to assess needs at an individual level before jumping straight to a tool. Too many times, students (and adults) are hooked up with a great piece of equipment that doesn’t provide them with what THEY need. There is a process, and anybody in the disability world is too familiar with how long these processes can be, but in this case it’s super important to follow through with a thorough assessment to ensure getting the best assistive technology possible.

For tips on how to do these assessments, check out The Assistive Technology Playground by my peer Marvin Williams.

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Morning Fantasy - A Mother's Dream Come True

I was cleaning out my garage and found a journal with exactly one entry in it dated June 29, 2004. It hit me like a ton of bricks because while I haven’t thought about this particular fantasy in a while, it still has a very strong hold on my heart. Here’s a piece of it:

You are sleeping now. I love watching you sleep because you are so peaceful. Your arms are not flailing nor are your legs kicking. You aren’t arching your back or twisting your head side-to-side or thrusting your tongue. Your hands are soft and only slightly curled as they should be, not fisted into a sweaty ball. The only thing that moves is your skinny belly as you inhale then exhale so perfectly. So perfectly.

I had a flash, a split second, when I knew you were okay and the next morning you were gonna come running into my room with sleepies in your eyes. You would stand right next to my face, barely seeing over the top of the mattress with your tiny-people legs and your string-bean body. Your hair would be all mussed and your pajama bottoms waist band would be half-tucked inside out. You would put your face right next to mine and whisper to me, “Mommy, are you up?” I would feel your sweet breath roll over my cheeks and with eyes closed I would whisper back, “Not yet.” So you’d climb in, as quietly as a hurricane and whisper, “Move over bacon.” I would and you would cuddle up to me. After waiting patiently for 43 seconds you would half-whisper, half speak, “I’m hungry.” So we’d get up, walk to the kitchen side-by-side, your soft tiny hand holding mine, and you’d pull up a chair to the counter and show me how to make pancakes.

But of course that didn’t happen because that flash wasn’t reality. It  left just as quickly as it came and when it was gone I mourned for you. You are alive and I’m so grateful for you but I mourn for you. For my angel face, the most beautiful girl in the whole wide world. And nobody can help me. Nobody understands why I feel this way but I do. I would give anything and everything up for you to be well and happy.

Nine years later, I still have moments where I mourn for the coulda’s, woulda’s, shoulda’s. But much of my thinking has changed. I have often (and still do, at times) felt that I’m living on the same planet as the rest of the human race but that I live in a different world. Thanks largely to the internet, I know that there are others like me, who do understand why I feel the way that I do. Wishing for things to be different but having somewhat of a fear of getting what I think I'm wishing for. There is often a battle going on in my head between living life the way it is and wondering how it would be if it were different.

Although I don't know what my daughter's thoughts and dreams are, what is most important is that is well and she is happy. That is the greatest blessing of all.

Don't Hate The Cure, Hate the Haters!

I am so sick of people who look for "cures" or better treatments or a change in their medical treatment being looked at as vile creatures that should be relegated to the depths of all of Dante's realms for eternity.

People with disabilities are already stigmatized and often cut off from general society because of antiquated assumptions and prejudiced thought. Why must people with disabilities have to endure hateful accusations from people within their own communities???

For those of you who may be unfamiliar with my family here’s a tiny recap. My daughter is now 15 years old. She has cerebral palsy which affects all four limbs that was caused by an injury at birth aka doctor’s error. She is non-verbal, non-ambulatory and needs full assistance in every aspect of life. She is a beautiful, intelligent, loving, funny girl who is disabled. I had her when I was barely 20 years old and raised her on my own. It was hard. I mean, really tough. Forget the psychological price a parent pays, the physical bill is enough to make some people dine and ditch! I can’t imagine myself without my angel face but I would be lying if I said there weren’t days where I felt like I just couldn’t do it anymore.

I would also be lying if I said I don’t still wish there was a cure or miracle waiting out there for us. If I came across some medical procedure, medication, doctor, wand, fairy dust or crystal ball that would take the CP right out of her without the risk of death or something like that, I wouldn’t even take a second breath before I screamed out, “HELL YES!!” Why do other parents – especially those of children with autism I have come to discover – judge me, and others like me, for that? Why do people in the disability community insist on further alienating individuals in their community who WANT a change? One paraplegic may be fine with never walking again while another searches for the scientific breakthrough that can give her her mobility back again. Is the former a “better person” than the latter because she’s “come to terms” with her disability, “accepted what’s been dealt”? Is the latter “better” because she’s a “fighter” and “isn’t giving up”? Why does one have to be better than the other? Each one of you reading this makes decisions for your own life that you feel is in your best interest. Each one of you reading this makes decisions for your own life that you feel is in your best interest. I’m 100% sure that none of you like it when someone offers their thoughts on which direction you should go in, especially when you don’t even ask!

Those parents who say things like, “I would never cure my child because then they wouldn’t be who they are”. Really? Every circumstance in everyone’s life makes us who we are. The family I was born into, the way my parents spoke to me, the school I went to as a kid, the friends I made in high school, the jobs I held in my 20’s…all those things make me into who I am. And I’m still evolving. Who I am in 5 years will be different than who I am at this very instant. So yes, if a child is cured or healed of their illness/disease/disability, they WILL be a different child. Anything that happens TO him, FOR him, WITH him, BY him will change him, for better or worse, whether he has a disability or not. 

How can anyone automatically assume that they know beyond a shadow of a doubt what their kids’ desires are when that kid can’t vocalize them? And who are you to judge me and others like me for wanting our kids to be able to have a different life? Do these people not think that if my daughter was given the choice, she would choose to WALK? Do they not think that she would love to TALK, to HAVE FRIENDS, SLEEPOVERS and GIGGLE FESTS? Do they not think that she would choose to have an easier road so that putting on a shirt is not a struggle; so that eating is a matter of preference rather than a chore of organizing her lips, tongue and cheeks in a manner that would allow her to bite, chew and swallow without spilling, coughing or choking??

Yes, if she were a “normal” kid in a “normal” school, she would be different. Maybe she would have an attitude – teenagers often do. Maybe she would be a bookworm. Maybe she would be a tomboy or a princess. Who the hells knows? I wish I did. Don’t villainize me for wanting the best for my child. Isn’t that what a parent is supposed to want?

Facing Your Fears - Do Disabilities Scare You Away From Enjoying Family Outings?

When we were kids, my Uncle Victor and Aunt Lina used to take me and my cousins to K.I.S.S. park every summer. At that time, there were about 6 – 8 of us, cousins and siblings, all elementary-school age. K.I.S.S. is an anagram that my uncle made up but back then, I really thought the park’s name was Kiss – only years later did I find out that it wasn’t! The adventure would begin with a mysterious letter we would get in the mail (what kid doesn’t love pulling a letter out of the mailbox with their name on it?) It would be in the form of a puzzle or note of some kind with clues. We would put the puzzle pieces together or figure out the riddles and discover that we were about to embark on another great day at the park. I honestly can’t remember if there were any other adults there besides the hosting couple or how we all even got there! I just have these wonderful memories of hot summer days, dusty games of soccer & freeze tag, canoe rides, horseback rides and fun, fun, fun! The entire time I wrote this section, I did so with a big smile on my face!

Many years later, when I was in my early 20’s, there was a thought to revive this old tradition. Several of us were excited when Uncle Victor suggested we hit the ol’ park again. My daughter was a toddler and I was having a (very) difficult time with adjusting and accepting life as we knew it but I was filled with nostalgia and excitedly looked forward to K.I.S.S. with my family. By this time, I was in a very deep depression over my daughter’s state of health. She couldn’t sit on her own, let alone walk; she was non-verbal so there were no first words or “mommy”; she was having seizures that were progressively getting worse. When I was pregnant, as all moms-to-be do, I had these visions and fantasies of how life was going to be. Her first steps, first words, going to the playground together, shopping for school supplies, sleepovers, giggle-fests…Everything crashed and burned the day she was born. I found myself constantly running through flames, trying not catch fire as I stumbled through the burning building that became our lives. Every milestone missed, every specialist appointment, every “normal” kid who walked by us was another spark, a new fire threatening to engulf me. I can tell you that practically nobody in my life had even an inkling that I was feeling this way. I’ve always had a hard edge to me and I’m sure I came off as angry or bitchy. But I felt tremendously lonely and terrified and sad. These are still feelings that stick with me today, thankfully not to the same degree, and I know that the majority of parents who have children with disabilities know what I’m talking about. I was having a tough span of days filled with these icky feelings when I wrote “A Mom Missing Out On Her Milestones”.

It was difficult for me to enjoy the day at K.I.S.S. park even though I had hoped that it would be a great day. There they all were, those walkers & talkers, flitting about, eating burgers at the picnic table we couldn’t get a wheelchair under no matter how we angled it, playing kickball, just doing what normal people do at a park. Enjoying the sun kissed summer afternoon, their laughter floating in the peaceful breeze as puffy clouds gently slid across a sapphire sky. That’s how my eyes saw their joy. Soft. Velvety. Melodic.

All I could think about was the uneven ground that I had to fight with the wheels of her chair. There were tree roots and branches littered about, hilly sections, small ditches and other barriers that come naturally in a park. We were supposed to walk over to the canoe area – a walk that we always enjoyed in the past – but I kept thinking about the struggle I would have pushing the chair over the grassy areas to keep up with the rest of the group. Not to mention the uncomfortable bumpy ride for my daughter who was sitting in the chair! And what about the canoe ride itself? How were we going to safely transfer her into the canoe when she can’t help at all? She can’t sit without full assistance – how can we get her to actually stay in there? And if we do manage all that and make it back, how will we get her out of it now that we’re IN the water and the canoe is bobbing about?

These of course were only (some of) the PHYSICAL worries that consumed me. I haven’t mentioned the bigger meaning behind the physicality involved in bringing along a person like my daughter to a fun day at a park! Seeing everyone else dashing about care-free made our reality (mine & my daughter’s), our differences, actually palpable. These differences weren’t just a notion. No, they were real; unquestionable; cold and hard. The toll this takes on a person’s psyche is sometimes unbearable. There are some days where I have to work at keeping my joy.

She is now 15 and looking back I wish I had done so many things differently. Isn’t that how it always is; 20-20 vision tends to be perfect. Why did I allow myself to focus on the negative parts of the trip? Thinking back on it, the only memories I have from that day is a sad game of kickball (for me; everyone else was having a great time, as I should’ve been) and the canoe ride. (Which, by the way, wasn’t at all terrible. She was still little so transferring is not the game of logistics it is today. But even today, I have Nick Vujicic to remind me that pretty much anybody can get in and out of water!) Because of my own personal issues, I didn’t allow myself to enjoy what she could do. She was having a beautiful time with her cousins even though she couldn’t run around bases or get a turn throwing the boomerang and wasn’t that the point of the day?

I find myself still paralyzed with fear to this day. I want to do things or go places and decide that I will take her no matter what but then I chicken out at the last minute. I start thinking about the things that can go wrong – maybe there won’t be an accessible area for us to sit/stand; maybe there will be steps we can’t get up; maybe it will be too crowded and she won’t be able to see anything except strangers’ butts; maybe we won’t be able to find parking. The list goes on and on. And yes, those things can happen. On our first family vacation in 2012 we found ourselves blocked out of a building that housed the resort’s pizzeria, arcade and ice cream parlor because it had steps, even to the first floor!

But what if things like that don’t happen?? What if we go and there is a spot waiting for us to park in, the venue has curb cut-outs and ramps leading to it so we can get there and there’s a wheelchair-accessible area so she doesn’t have to miss out on seeing what everyone else is seeing? What about that?

There are some things that we just can’t do, for logistical and emotional (on my part) reasons. We can’t go to certain people’s homes because they're just not accessible. Taking the train into the city for a day of sight-seeing and shopping – not gonna happen. Spending a Sunday at the beach from dusk till dawn with coolers filled with bagels, cold cuts and bottled water – a thing of my past. But why should that stop us from creating wonderful, loving, fun-filled memories doing things that we can do? It shouldn’t –  and it won’t!

Did you have fears or sadness surrounding family outings like me? Do you still? What do you do to try to get past these feelings?

Hurricane Sandy

I feel like I have been living in a post-apocalyptic world since being hit by Hurricane Sandy. We had no power, no heat, no hot water. We moved as much stuff from the fridge into coolers with ice to the garage & I cooked on the grill plate attached to my BBQ in the garage! That was pretty interesting - only being able to cook one thing at a time. I usually have a couple pots going at once. Then to do it with a flashlight because it gets dark pretty early and we can’t exactly have dinner at 4:30! I joked with the girl that I felt like we were camping. That’s a pretend game she often wants to play and she has asked to go camping many times. We have never gone and I never intended on going because I don’t find any appeal to sleeping on dirt, being crawled over by bugs. This experience has only strengthened my “NO WAY, JOSE” attitude toward “roughing it”.

And keeping occupied a kid with CP who can’t do anything for herself is unbelievably difficult. Think about it; you can pick up a book and read if you want, or play solitaire or even a board game with someone else, take a nap…but with the girl, I have to not only be HER body but my body as well. And a 14 year old (with delays) is not easily distracted, especially when she is trying to tell me what it is she wants and 1) I can’t figure it out because her communication device is dead and the game of 20 questions isn’t getting us anywhere or 2) she wants to do something on the computer or T.V. that requires power/internet and she doesn’t understand the concept of no power = no T.V./internet.

I knew I would be excited when the lights came back on but she was ecstatic! It was funny because she had already gone to bed about 15 minutes prior to the power coming back on. But as soon as she heard the “beep beep” from some of the electronics catching internet (that sounds like a new virus) and the voices from my T.V. set, she started to laugh and holler. She INSISTED I turn on her television so she can catch up on some of her shows! She was truly a happy kid.

P.S. – There are so many people still suffering through the after-effects of Sandy. The people living on Fire Island and other shore communities have lost so much. I haven’t seen the pictures but on the radio, the reporters were saying that each individual house looked like an island – all you could see were rooftops surrounded by water. This post reflects my joy at returning to normal without any major catastrophes save for some lost condiments that we couldn’t fit in the coolers but I don’t want to diminish the trauma being experienced by thousands. I do pray that those affected will find comfort and can return to their normal as quickly as possible, in Jesus name.

A Mom Missing Out On Her Milestones - Children With Disabilities

“Well, this is all she’s ever known so it’s not like she’s sad about what she doesn’t have anymore”

“She was born like this so she doesn’t know any other way to be”

“Look at Sara. She was born like that and she’s always so happy” (Sara is my aunt who is now in her 60’s and deaf)

These were all things I would be told when I would get sad about my daughter being disabled. She can’t sit, walk, talk, feed herself or transfer herself from one spot to another. She will never go to sleepovers, drive, graduate from high school, or get married. Please don’t say ‘you never know’ because yes, it’s true, miracles do happen and I am a woman of faith but as things are right now, this is reality. I can say these things without breaking down at this moment but it hasn’t always been this way. (There are still days when I can’t think about these things without losing my mind but thankfully those days don’t happen as often.)

I am confident that the people telling me these things are only trying to help. I guess what I was supposed to see was that she hasn’t lost anything…she never had it to begin with. Okay, I can see the logic behind that thinking but it just doesn’t translate into real life. Not with me, anyway. I know for a fact that many people who were born with their disability are perfectly aware of what they don’t have. And believe you me, I was fully aware of what I didn’t get to have.

What I was supposed to have was a baby who would come home with me when I left the hospital. She was going to smile and sit and clap her hands. She was going to pull herself up to stand and walk across the kitchen floor. She was going to sit in a dining room chair and eat her cereal all by herself. She was going to reach up for mommy’s hand and bounce along beside her, crossing the parking lot of Target, pigtails bouncing, sneakers flashing.  She was going to kindergarten. She was going to make mommy breakfast in bed – crispy toast broken into pieces because the butter was tough to spread, a glass of OJ dripping onto the tray and a flower made from construction paper grandma helped her make. She was going to sit next to mommy’s head while mommy lay in bed on a sleepy Sunday morning and brush it and put all these crazy ponytails all over it because that’s what mommy did with grandma when she was a little girl. 

I was going to have a little girl who would call me mommy.

So maybe she doesn’t know what she doesn’t have. But I DO. So if I cry or am sad about the fact that I missed out on my milestones please understand that I am allowed to mourn for the child I thought I was going to have. The one I did get is smart, funny, confident, strong-willed, gorgeous, loving, strong, protective, a daredevil and an awesome kid to have around! And the truth is I would not be who I am right now if I wasn’t blessed with her. But that does not mean that I can’t mourn for the little girl I was expecting. 

Handprints on the TV - A Milestone In A Family With Disabilities

We reached another milestone today. Handprints on the TV screen. I’ve been unknowingly waiting for this one and I couldn’t be more excited than if the boy had recited the alphabet today at 10 months old!

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One day, when the girl was 9 years old, we came home from the mall or somewhere and were “unwrapping”. That’s when we remove the chest harness, unbutton and remove the coat, unwind the scarf, strip off the sweater and take off the shoes. It’s a process as many of you well know! We were doing this in the dining room and I dropped her shoes in the corner, out of the way of her wheelchair so it wouldn’t block our path. I gave her a snack and took her to her room to stretch out in her bed and watch some TV. The unwrapping can take up to 10 minutes, depending on how cooperative the girl is and how many layers I need to peel off of myself, and the snack about another 15. Getting home from the mall can be exhausting!



Innocent yet mocking

When I got back to the dining room to clean up the snack mess I noticed her cute little black Mary Jane’s sitting in the corner of the room. Suddenly, the room shrunk to the tiny spot they took up and I was paralyzed. I remember thinking specifically, “Those shoes could be anybody’s shoes.” Walking up to my main door, anybody visiting my home would know immediately that there was somebody in this house that needed some assistance due to the wheelchair ramp. Other clues could be the wheelchair accessible van in the driveway; once inside, the backup manual wheelchair that is usually rolling from room to room with no permanent storage spot; the communication device that’s almost always on the dining room table; the roll-in shower; the bed rails...

But these shoes – these she wore without her orthotics (leg braces) so they were just regular ol’ shoes. Those shiny little shoes, so innocently sitting there. Mocking me with a deceitful beauty. It occurred to me that nobody could tell that their owner was disabled. They could have belonged to a blonde who had a thing for tiaras; the winner of last year’s Suffolk County Spelling Bee; the star of Abby Lee Miller’s Dance Company. That last thought was the one that froze me. My throat closed up and my chest tightened and they just sneered at me, filling my head with thoughts of little girls tapping, twirling, hell, just WALKING in them. But the soles of these were brand spanking new. They had been worn at least a dozen times yet not a scuff, not a scratch, not a scrape on them. They belonged to a little girl who did not tap nor twirl.

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My boy gives his mother the privilege of living through the things that most moms cringe at. I know a mom who is so anal about handprints that she wipes her microwave free from said prints several times a day! When her children were little, like 3 or 4, she would clean up their room WHILE they were still playing with their toys. Me? I’m going to leave the prints up for a while. When the TV is off, I like walking past it and seeing the proof that there is an adorable little boy in this home who is going to grow up to run, jump and yes, walk. 

Let's Go Swimming!...Maybe - Accessible Pools in Public Places

Public Pools and the ADA

The Americans with Disabilities Act (ADA) outlines the rights of people with disabilities and forbids discrimination of any kind towards this group. In 2010, the Department of Justice (DOJ) sought to apply this regulation to public entities that offer a pool or spa, such as hotels, by requiring them to make these amenities accessible. 2 ½ years later we are still waiting.


Apparently 2 years is not enough time to sort out what exactly the government means when it says “pool lift” or “sloped entry”. So no swimming for you if you’re unable to get yourself in and out of a pool and there's no one around to help you, buster!

Thanks to hotel lobbyists, such as the American Hotel & Lodging Association (AH&LA), who pushed hard to extend the deadline for compliance set forth by the DOJ and Senator Jim DeMint (R) who introduced a bill to do just that right before the previous deadline of March 17, 2012, the NEW, new deadline is January 31, 2012. To some people, I guess as long as THEY are not affected, accessibility doesn’t matter too much. Official deadlines for when these public entities were supposed to be in compliance have been extended repeatedly since 2010 – at least a half dozen times – even though these businesses were well aware that they were obligated to make these changes.

"Reasons" Against Making Pools Accessible

Some hoteliers who oppose the DOJ requirements threatened to close down their pool entirely or to fill in their spas. BOOO-HOOOO! WAH-WAH-WAH! You sound like a bunch of crybabies – “If you make me do that then I just won’t have a pool for ANYBODY!” The image of a two year old stomping his feet with his arms crossed and his bottom lip pouting springs to mind. Fine by me; lose ALL your business if that makes you happy… Another argument made by the competent and crafty hoteliers is that installing a permanent lift will increase their liability during times when there is no lifeguard on duty. UHHHHH, hold on a minute. Are you saying that able-bodied folk NEVER go in swimming pools outside of posted hours? DAMN those insolent handicapped rejects! Why can’t they obey the rules like their astute counterparts? You know, the normal people!

Family Ties

Imagine going on a family vacation with your children and leaving one of your kids at home or pool side or in the hotel room because they were too big for you to lift in and out of the pool. Imagine if your husband or wife was a quadriplegic and had limited use of their arms and couldn't help you help them get into the pool. Imagine if it was YOU; watching from the sidelines or just not even going at all!  This does not sound fair. It sounds miserable, depressing, demoralizing. To be treated as less-than, unimportant. Am I taking this too far? Really? My daughter’s ability to be able to socialize and vacation with her parents and brother is directly related to whether or not we can get her wheelchair where we are going. Read about when we were on a family vacation and couldn't get pizza and ice cream. Saying to her, “You can’t go to there because your wheelchair doesn’t fit there” is the same as saying “You’re not important enough to make a change that can open up your world”. Literally.

Any one of us (yes, even YOU, dear reader) could BECOME disabled by an accident or fall, sickness or aging; just because you weren't BORN disabled doesn't mean you never WILL be!!

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.

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!

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!