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?

4 Things My Mommy Imagination Ran Wild With

The boy had a sleepover at grandma’s last night and I almost feel like a new woman! For such a tiny person, he sure does take up a lot of space in the bed. Yes, he very often sleeps in our bed. When I was pregnant, and even after he was already here, I swore that I would not be one of those parents who would allow their child to crawl into bed with them, no matter what, but real-life has shown me that sometimes no matter how sure you are in your mind that you will be one way, your kid decides otherwise for you.

Here are 4 Big Ideas I had going into this baby thing that didn’t quite turn out how I imagined:

1.  He would have the most comprehensive & complete baby milestone book on the face of the planet – I imagined myself writing down the date and time, right down to the very second, that my boy hit every milestone. (I briefly considered using latitude and longitude coordinates to precisely identify the location the "first" took place but scrapped that idea when I remembered I have no clue how to figure that out.) His first smile, the first time he sit up on his own, the first projectile poop (That one was on daddy. Yes, on daddy. Twice. In the same day.) 

I envisioned this cutely decorated scrap book filled with snapshots and notes that we could look back on together when he was grown. Currently, he is 20 months old and I have one picture marked “first time drinking from a juice box” that I just tagged a few days ago in my pictures folder on my laptop. Don’t get me wrong, I have a bunch of photos and videos of him doing things – you know, important things like batting at a fluff on the carpet with his back to the camera – saved on my hard drive but they are in random order with no tags or captions. There’s a picture frame on his wall with a cutout for each month and a big one in the center for the 1^st birthday picture. I managed to put in photos that I guessed were months 1-10 just before his 1^st birthday but am still missing months 11 and 12. Maybe I can get around to it before his 2^nd birthday.

2.  Each person would sleep in their own bed – I know there are some moms (and dads, too) who think the best place for the parents & children to sleep is in one big, comfy bed. I do not subscribe to that theory. Unfortunately, my son does. They call it a “family bed”; I call it “I’d rather sleep on the couch because it’s more comfortable than my own cramped bed”. Up until he was about 11 months old all we would have to do is lay him down in his crib for naps and bed time and he would happily soothe himself to sleep. Out of nowhere, the script was flipped. I can almost hear the sound of a record scratching in my head when I think of the 360 he made. It began with him crying to be picked up. Ok, we decided, we’ll let him ‘cry it out’. But he would cry until he threw up. Eventually, he would skip the whole crying part and stick his hand down his throat to induce vomiting. This kid cuts right to the chase. We moved his crib to the foot of our bed, hoping being close to us would be good enough but no, he’d rather be scrunched up in bed with mommy & daddy. Wait, who am I kidding? The only ones scrunched up are mommy & daddy – baby is sprawled out like a king while we try not to fall off the edge of the mattress he's relegated us to nightly!

3. He would sleep through the night after he turned 1 – 

I really figured that by 13 or 14 months old, he’d be sleeping through the night. My zombie eyes and foggy brain prove otherwise. Up until about 16 months he was still taking 3 bottles a night! I’d like to say that I trained him to not need any milk through the night but truthfully he just grew out of it himself. What he does still do is wake up and insist on climbing into bed with us. You see, we transfer him to his crib after he falls asleep on our bed. But when he wakes and realizes he’s been moved, he screams and cries until he can get back into our bed. We must have a magical mattress because there’ve been times where I’ve woken to find him asleep, upside down at my feet. He’d climbed out of his crib onto our bed but didn’t quite make it to the top! He’s so sleepy, all he needs is to be in our bed, even if it is by daddy’s stinky feet (my feet do not stink).

4. We would eat veggies and healthy food every day, all day – Yeah, right. When I was a kid, my

mom had to tell me that every meat I was presented with was chicken, I wouldn’t eat anything dark, all the crust had to be removed from my bread & no vegetables or fruit (aside from bananas) would pass my lips. As I got older, I was known as the “Chef Boyardee Girl” because that was practically all I would eat. Then I went through a mashed potatoes-only phase. You could say I was a slightly picky eater. Turns out the apple doesn’t fall too far from the tree. I’ve read articles that recommend camouflaging veggies in foods kids love naturally. So being the crafty mom I am, I try to give him mac & cheese with broccoli mixed into it. It’s kind of amusing to watch him take a bite, chew it up a bit then let it dribble out of his mouth, down his chin and onto his belly, all the while eyeballing me with that “Go ahead. Test me” look. I’ve occasionally managed to trick him if he’s really hungry but usually you’ll find me trudging back into the kitchen to get him real mac n’ cheese.

Yep, things rarely turn out as how we imagine them. Especially when there’s a kid with his own ideas involved!

What are some things that you expected that didn’t quite turn out the way you thought it would?

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I Wanna Hold Your Hand

I’ve talked about some of my fantasies in “I’m Aware!”

My son helped me to realize one of them recently.

Such a silly little thing, to be able to walk alongside my child, holding hands but it’s the silly little things that make each day special. Today is a good day.

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?

YOU Have Autism, Too!

What is autism?

If someone is shy & considered “socially awkward” – does that mean they have autism?
If someone is quiet & doesn’t speak much – do they have autism?

If someone is always tapping their finger or their head – is that a sign of autism?

“SCIENTIFIC” STUDY

Well, according to a new study by the CDC, I had autism when I was a kid which I have apparently grown out of. And 1 in 50 kids have it, at least, according Michael Rosanoff of advocacy group “Autism Speaks”. 1 in 50?? Really?? Look, is it possible that of every 50 kids, at least one of them is gonna have autism? Sure, I guess so. Anything’s possible. But how in the world can doing a telephone survey on parents be considered a responsible way of getting information that can dramatically impact families? That’s how this particular study was done. 95,000 parents in 2011 and 2012 were contacted by phone and asked certain questions about their children. According to the study, less than a quarter of the parents contacted were interested in doing the survey which says that parents not affected by autism were likely not the ones answering the survey. But here’s my concern: parents cannot be the only source of information gathering in regards to a child’s health.

TEAMWORK

Before you lose your mind, let me explain what I mean. I am a fierce advocate for my children’s health. I stay on top of what needs to be done and don’t necessarily agree with the doctor’s advice just because s/he is a doctor. We work as a team to do the best for my kids’ health issues. I do my research and read up on issues related to their medical needs. But I am no doctor. I must take into account what the medical professionals are telling me when making final decisions on how to move forward.  Isn't it possible that some parents who answered this survey have their facts wrong? Couldn't it be true that there are parents who believe their kids “have something”, even though their doctors have disagreed with them, because they like to tap their fingers on the floor while watching Sid the Science Kid or because they ignore their name being called, no matter how much they’re called? Then here comes this phone survey, asking questions about an unsubstantiated fear they have and BOOM! 1 in 50 kids have autism!

Couldn't it also be true that these “symptoms” of mild autism are just harmless habits? Maybe that socially awkward person IS just supremely shy. Maybe that kid with a speech delay prefers to listen rather than speak. We all know that there is no medical test, no genetic screening, which will confirm conclusively that a person has autism. In very severe cases, it’s quite obvious. But are we saying that every little quirk is something? Does everything a person do or think need to be diagnosed as some type of neurological deficiency or disability? I've told you before; I really hated science in middle school and didn't do so well in it. Should I have been diagnosed with a learning disability?

ENOUGH, ALREADY

Listen, I’m all for research but in my opinion, all this media coverage on every single iota of autism research has gotten way out of control. I receive several newsletters on disability issues daily and in every piece of mail there are several links to one autism article or another. A new study on rats; a new therapy that may cure it; smelling salts that will change thinking patterns; scientific “breakthroughs” that have no evidence or track record saturating the brains of families who are looking for cures or even just minimal help. 

Don’t you think that all this “information” is actually detrimental, rather than helpful, to families who are really interested in actual help?

Dancing Dreams – Ballet For Girls With Disabilities

I was on the internet one day, just poking around, and I came across this wonderful dance program for children with disabilities. Dancing Dreams was started in 2002 by Joann Ferrara, a pediatric physical therapist with a background in ballet. It has grown from five dancers to over 50 girls, ages 3 to 17. Based in Queens, NY, dancers come from all over NY state and even New Jersey to participate. Each ballerina has a helper – a high school student who is trained to assist a student in class. Every year, the ballerinas put on a performance for their family & friends which is free and open for all to come enjoy!

This lovely program has been featured on the Today Show, CBS Early Show & other news channels. It’s also appeared in The New York Times and other national publications such as People Magazine. “Ballerina Dreams”, a book about the program published in 2007, won accolades in the publishing field.  Principal Dancer of the New York City Ballet, Jenifer Ringer, fell in love with Dancing Dreams & its mission and is now its Artistic Consultant.

Currently, there are three programs Dancing Dreams runs. There is the Adaptive Dance Class, of course. They also do community outreach where they speak at schools, teaching children about awareness. The Teen Leadership program helps volunteers learn valuable leadership skills while turning dreams into reality for the ballerinas.

Dancing Dreams is a nonprofit organization so it relies on charitable contributions for funding. There is also a voluntary contribution for classes to cover the cost but no ballerina has ever been turned away due to an inability to pay. Donators can choose to purchase items for ballerinas, such as ballet slippers ($35) or a leotard and tights ($75). See a full list ofdonation suggestions here.

Check out their website at DancingDreams.org