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?

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?

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. 

Communication Needs On A Flight

Flight Attendants Don't Know Everything?

I just finished reading an article about how a teen with autism that uses an iPad for communication was told to put the device away by a flight attendant on an American Airlines flight. When I read the headline, “Airline iPad Policy Sparks Disability Dispute”, I thought I would be angry by the time I finished reading the article. But then I realized, this is the perfect teachable moment.
 

The teen’s aide explained that the iPad was her method of communicating and the flight attendant (according to the article) responded by saying “with all her years of flying that she’s never seen or heard anybody using an iPad to communicate before”. She was simply following Department of Transportation guidelines and the policy of the airline. The first thought that came to mind was – how old is this lady? Then I thought – how is it that people still don’t know about this great age of technology that we live in? Also – how does such a large corporation such as American Airlines still not have their policies reflect these great advancements? Of course these things are obvious to me; this is the world I live in. So it’s unfair to automatically assume that someone is just being a big jerk. With that in mind, I’d like to take a moment to educate those of you who are blissfully unaware so that you don’t become the jerk in an article over a misunderstanding.
 

Communication Needs

DynaVox

For someone who is non-verbal, taking away their communication device, whether it is an iPad, DynaVox or flip cards is like taping your mouth shut with duct tape. Would you like to sit through a flight or car ride or football game and not be able to express your thoughts or feelings? I know sometimes you wish you could tape someone ELSE’S mouth shut but let’s focus here. Really picture yourself doing something you do daily – chatting with a coworker, ordering food, explaining medical symptoms to a doctor, telling a joke – and do it with duct tape over your mouth.

Some of you may think, “ok so I’ll just gesture with my hands, point to what I need or nod my head”. Let’s see what would happen if you tied your arms down to your body so that you couldn’t use them and couldn’t stand up or walk, either. That’s how it is for people like my daughter. She can’t do sign language and her pointing and gesturing ability is limited. You might also think, “it’s just a short plane ride – what’s the big deal?” Well, besides the fact that that’s just plain stupid, what if the person has a medical emergency coming on (for example, some people get auras right before they have a seizure) or a leg cramp or just realized they need their medication or need to use the restroom? All very important reasons to be able to SPEAK!

 

The End Result

 

For those of you interested, according to the article the teen was able to keep out her iPad after an intervention from the pilot. Thinking about the commotion that must have gone on that would prompt the pilot to mediate, I would have been very embarrassed if it was me in that teen’s shoes. I’m sure there were some jerks on that flight who were annoyed that their flight was being held up “over an iPad” but now that you know why it’s so important for some to be able to hold on to their personal devices YOU won’t be that jerk if the situation ever arises! Hey, you may even be able to intervene on behalf of the person who can’t communicate as easily as you can! And that person will be blessed to have a good Samaritan around at just the right time!