Editor’s Note. Look for upcoming articles from Kimmy, I am so excited to be growing our community of Special Needs parents and children to share with us. If at any time, you are interested, please send me a note.
Presenting a gallery of artwork by Tyler Szymonik. My son Tyler is 12 years old and has profound autism. His speaking skills are very limited. When you first meet him, you might think that not much is going through his thoughts. But he often drops us hints that he really is ‘in there’. He has often reminded me of the tiger in the ‘Calvin and Hobbes’ cartoon. To the rest of the world, Hobbes the tiger is a stuffed animal. Blank expression, unseeing eyes, cuddly but devoid of thought. But when he and his boy Calvin are alone, Hobbes comes to life with wit, a sense of humor, and the capacity to misbehave in sometimed clever ways! Thus it is with Tyler.
Recently, he gave us an interesting glimpse of what is going on in his mind. Of what he likes and finds interesting. It came in the form of several pictures he apparently drew in Microsoft Paint on the computer, and saved to a file. Being Tyler, he never pointed them out to me or his dad. We would probably never have known they existed if he had not set a few of them up as screen savers. One day I walked into the office and there they were, silently passing by on the screen. We were delighted at these little snapshots of what is in his head, and investigated further. There were more. LOTS more. I submit them here for you to peruse. I hope you enjoy them. Cindy
Hi, my name is Jason Dash and I am writing today about my son Max Dash and how is attitude, bravery, and smile over the past 6 months has not only inspired our family, but has taught us how to be better parents, and what being a parent actually means. Max is an amazing little boy who just turned two on July 10th. This winter, he was diagnosed with Type 2 Spinal Muscular Atrophy (SMA II). My family had been preparing ourselves for this diagnosis for some time. We noticed early on that Max was having trouble sitting on his own and wasn’t hitting some of the same gross motor milestones that many children usually hit.
No matter how much you prepare yourself, the reality that your child will never walk, still hits you like a freight train going a million miles per hour. Your mind goes blank for a few moments and when you come to, you just keep telling yourself that everything will be ok. Although you really can’t comprehend what ok means or, how things are actually going to get to the point of being “ok”.
The first few doctor visits and the first trip to the muscular dystrophy clinic at the Richmond Children’s Hospital were hard. As a parent, you try to be attentive as possible, understand everything the doctors are saying. You try to hold yourself together, because you want to be looked at as a strong parent however, all the while, you really don’t know what that means and you are worried that you will never get to the point of being ok.
Six months into this diagnosis, our family still hasn’t figured everything out. We have a long way to go, and every day we learn something new, but for the first time since the diagnosis, I can finally say that we are beginning to feel ok.
What we have realized is that Max is the same as any other two year old despite his diagnosis. Our initial feelings of, “Max will not be able to accomplish the things he wants to” – is totally false. The idea that nothing will be normal was not anything but an initial reaction caused by fear and uncertainty. We have noticed that in Max’s mind, it doesn’t mean a thing to him that he is wheelchair bound or unable to stand. He wants to do the same things he witnesses all of the other children doing. We have made it our job as parents to encourage him and make sure we find a way for him to do it.
It is about stretching him and challenging him in everything he wants to do. We see an achiever in our son, whether it be him playing tee ball in the Miracle League, learning how to control a motorized wheelchair or just trying to complete tasks that many of us take for granted every day. A neighbor of ours mentioned this past weekend, ” I love seeing your son, he is always smiling and, he makes you realize that there is so much to smile about.”
Being ok, means that every day we work to give Max what he needs to succeed, to be happy, and to prosper in a world where the only limits are the limits you give yourself. Our job, is to keep Max smiling, so that he can change the world, one smile at a time.
Hi all. I am Cindy Szymonik, and I am the mom of two really great sons. A teen with VERY high functioning Asperger’s Syndrome, and an almost-teen with rather profound Autism. Over the years, I have kept a list in my head of some of their endearing (and maybe not so endearing) quirks. Now, we all have quirks. Kids who are not on the spectrum have some awesome quirks also. But some of the quirks displayed by those on the spectrum are worthy of note in the Guinness Book of World Records. If you are the parent of a quirk-meister and are idly wondering whether the quirks might be spectrum worthy, I submit the following for you to peruse:
Top 10 Annoyances of Being A Special Needs Parent
Below is my David Letterman style Top 10 list of Annoyances being a Dad of a special needs child to
Peyton (aka P, Pman). The list is half serious, half humor. Please take it with a grain of salt. Also
understand this is NOT the Top 10 list of things that make me Angry as a Dad of a special needs child.
That list I believe is fairly universal to special needs parents and there’s no need to dwell on that special
neurologist and principal who at the mere mentioning of their names make my blood pressure rise, the
flames shoot out of my ears and horns… but let’s not regress. Moving on!
1) The pool
I don’t mean the pool itself. It’s a great place to play and my particular one has a bar to boot.
The pool is an interesting place where you have a high density of people in a relatively small
space. This allows me to be in a position to observe and over hear a lot of chatter without
actually being part of conversations. This one is a two parter:
a) “The Friend Parent” – I don’t know what happened to my generation, but there are way too
many adults with children who don’t really parent. They seem too concerned with being
their child’s friend to discipline them in any fashion. And at the pool, that turns into
annoying little SOBs that don’t know how to act and thus ruining my precious few hours of
freedom from my responsibilities at home. Between their kid’s behavior and the constant
lifeguard whistle blowing (where the adults have delegated their responsibilities to other
kids with whistles to do the parenting), I’m about to lose it.
b) Stop complaining and back biting – As I said, I get to hear all sorts of conversations at the
pool. It’s amazing what people complain about as a ‘problem’ in their lives or the amount of
B.S. they say about other people. Hey, come over to my place, I’ll show you some
difficulties. Stop your complaining and read ‘a’ above… do some parenting. There’s no telling
what is said about me when I bring Pman to the pool. Just stick to the plastic surgery. At
least I can enjoy that.
2) School Office lady
I’m not sure what it is with this particular group, as it seems to be the same no matter the
school. It’s as if there was a question on the application for this position that asks “Were you
never in a position of power? Would you like to be?” It’s amazing the amount of attitude I’ve
gotten over the years when I arrive to grab P for a doctor’s appointment about the signing in
process or this or that. I’ve had harassing phone calls demanding why there wasn’t a note
explaining his tardiness or absence. Oh, I’m sorry, he was having a seizure. No I don’t have a
doctor’s note because I know how to deal with them myself. While they’re chattering away
about rules or whatever, I’m simply holding back the voice screaming in my head which is
shouting ‘Your rules don’t apply to my son and personally I don’t give a rip about your
procedures!’ I wonder how many have gone home with a headache because I was secretly
burning holes through them with my eyes. Darn superpower has never worked.
3) Mom has all the answers
This isn’t a knock on my wife. She’s a great mom and wife. We have things pretty well divvyed
up as far as workload goes with Pman. My issue is with everyone else assuming she does all the
work and is the one who knows all of his details. Without exception, every time we (yes, we, I go
to every doctor’s appointment) the nurse/doctor looks to my wife with all of their exploratory
questions. This isn’t limited to the medical profession. This happens with visitors at home or just
about anywhere else. Hey, people, who do you think lifts this 80 pound 12 year old kid? I’ve
wiped his rear end more than any other person on this planet. [Side note – think about that
task. Imagine if you pooped your pants and the type of effort that would take to clean. I do it
every day]. So you can ask my wife some questions because she’s much more attractive than I.
But my eyes are over here!
4) No label
Global physical and mental retardation
From zero to 5 years of age, we drove P to every major hospital on the East Coast. We shipped
his blood all over the country. In the end, nothing. No diagnosis, no label. We have no fancy
magnet or sticker to put on the car, no catchy slogan, no 5k walk to raise awareness or funds. It
makes no difference to us as parents and it makes no difference in his care. This is the primary
reason we stopped searching after 5 years. That and I was done with watching people feebly fish
needles in his arms looking for a vein. Finding some label or cause would result in no change to
his care or the love he receives. That being said, not having a label is seemingly hard for
everyone else. Those around us have nothing to latch on to. You can see the discomfort in their
eyes when you say ‘Retarded’. As if saying ‘Downs’ or ‘MS’ or any number of other names is
Ironic, isn’t it?
5) The know it all
This applies to wide range of folks.
The therapist who constantly changes his equipment and writes demanding emails about how
we need to do this or that. Eh, you spend 15 minutes a week with him. Stop messing with his
stuff without talking to me first and no, I don’t have 15 wheelchairs of all shapes and sizes just
lying around to meet your ever changing criteria.
The person who knows ‘why’ this happened to P. “It must be something you ate during
The person with the cure. “You need to feed him this” or “He needs this pill or that”
The person who knew somebody. “My friend has a child with xyz, so you should do pdq”
They all mean well (maybe). But hey, after 12+ years at this, I think I’m good to go. In other
professions I would have a PhD by this point. As a matter of fact, I’ve directed doctors in the ER
on what to do as they looked at P and were dumbfounded. Do you think anyone would mind if I
added ‘MD’ to my signature?
6) And their kids are normal
What this isn’t: This isn’t a ‘why him, why us’ rant.
We did everything the correct way when Kris was pregnant with Peyton. Everything from
conception to 3 months of age was textbook perfect. Yet, things didn’t turn out that way in the
long run. A consistent annoyance are all the others who didn’t ‘follow the rules’. Those who are
too caught up in their own selfish acts to do things the right way. Those who smoke, drink
alcohol, drugs, certain foods and on and on and on. Those who basically do all the things doctors
say not to do during pregnancy and seemingly, their kids are biologically normal. There’s no
rhyme or reason. I’m counting on natural selection to balance their equations for me.
7) The Grandparents
Some of my fondest memories are of spending weeks in the summer with one set of
Grandparents or another. Whether fishing or driving a riding lawn mower around and around, I
had a blast. It wasn’t until I was an adult that I realized that this time with them was probably a
crucial annual break for my mother. Well, now I’m a parent and I’m ready for some payback!
Unfortunately, that can’t happen. This primarily comes down to their homes (like everyone
else’s). They aren’t designed with P’s safety in mind. Couple that with their inability to meet the
physical demands in caring for our little man. Everyone is well intentioned, but in the end, the
number of people who can appropriately care for P can be counted on only one hand (#1 Me, #2
My wife, 2 caregivers… ah, yeah, that’s it). The old adage is that Parents want their grown kids
to have grandkids so that they can experience the tribulations of parenthood, while the
Grandparents sit back saying ‘I told you so’ and having a good laugh. I want my old adage, of
dropping the kids off and heading out on our own for a week or two while the Grandparent’s
house melts into a blur of chaos and screaming.
If I see one more Shared Facebook post about Stay at Home Mom’s that are worth $250k, $500k
or a bazillion dollars annually I’m going to pop. The justifications in these things are always the
same, equating their day to day tasks to corporate jobs and their value. Hey, over share-er on
Facebook, I do all the same things you do AND I have a job AND I have a severely disabled child. I
would kill to be a stay at home dad. Those weeds in the lawn, taunting me through the window,
would be pulverized. I would be in shape, tan and my golf game would finally be under 100. Stop
complaining. See how good you have it and enjoy. Oh, and the term ‘play date’ has to go.
Seriously, stop it, now.
I will admit, although in the smallest of minorities, I am lucky enough to have a couple of moms
in my neighborhood who do admit they have it great. I salute you… and I want to join you.
9) The Gawkers
This one is obvious. It doesn’t fall into the ‘makes me Angry’ category, simply because it’s
expected. My wife is a generous soul, telling others that it’s ok to talk to P instead of starring
with gaped mouths. Me? I usually return the stares with my nastiest glare. I think my beard
really adds to the affect. Unfortunately, people are so entranced, they rarely look up at me. I
recently read ‘The Trident’. It’s about a Navy Seal and toward the end of the book, was shot
through the face in Iraq. Needless to say, the injury was gruesome. He and his wife travelled all
over the country for years seeing specialists trying to reconstruct his face. Each time they were
in an airport, people would stare like he was a freak show. He got fed up with it and started
yelling ‘Boo’. I may need to change my tactics. P and I are going Navy Seal on folks from here on
out. Eyes down people!
10) The Wawkers (the opposite of Gawkers, glazed over Walkers).
These are the people who are oblivious that someone in a wheelchair is within their vicinity.
Hell, they are oblivious to everything. This isn’t even a Millennial thing. People of all ages are
simply in their own bubble without looking around. They are the same ones you walk behind at
the mall and they suddenly stop in their tracks. They don’t step to the side or even attempt to
be aware that they aren’t alone in this highly trafficked area. Admittedly, I’ve nailed some shins
with P’s wheelchair because I knew they weren’t paying attention and I did the opposite of
trying to avoid them. It’s devilishly fun watching them get popped, their face instantly gets red
while they start to process what’s caused that welt and pain. As it sinks in and the wheelchair
comes into focus, you see this huge bulge in their throat as they swallow all of their instinctive
curse words as they realize they were about to topple over a disabled child. I don’t even care if
my smile gives away that this wasn’t as much an accident as they assumed. Teeheehee. Score
one for Pman and Pop. Like Jay Z says, On to the Next One…
So there you have it. I hope it’s given you a laugh or two.
Hi, I’m Leslie Wood’s Mom, Lisa Wood. I would like to tell you what an awesome person my daughter is. Leslie was actually a still born baby. The doctors performed CPR on her for 12 minutes and brought Leslie back to life. She was diagnosed with Spastic Quadriplegia Cerebral Palsy at the age of 9 months and has been in a power wheelchair since she was 5 years old.
Leslie is now 18 years old and a rising senior at Hopewell High School and everyone at Hopewell High knows it. This past school year, Leslie participated in the 2015 Miss Hopewell High School Pageant and was voted Miss Congeniality! She was very excited and happy about that, she even had her own Paparazzi flashing pictures during the pageant and afterwards. She could not stop smiling the entire night.
Leslie has taken full advantage of her school’s curriculum, she will take a Life-Skills class for three blocks and this fall will be an office runner for the Main Office for her elective. In the past she has taken Early Childcare and Catering classes for her electives and she has worked in the Library at school.
In her free time Leslie played baseball with the Miracle League of Richmond every Saturday morning. She was on the San Francisco Giants team and came ready to play ball with her bat each Saturday.
Leslie was also selected to attend the 2015 I’m Determined Youth and Parent Summit in Harrisonburg, Virginia at James Madison University in June. This two-day event is sponsored by the Virginia Department of Education and the Partnership for People with Disabilities. Youth with disabilities from across the Commonwealth meet to network and discuss issues of importance to youth and young adults with disabilities. This year’s theme was “Get To Work.”
The mission was “to provide children with disabilities with the knowledge and skills they need to live, learn, work and participate in communities of their choice with the maximum amount of independence as possible.”
While there, Leslie and I both made a lot of friends from all over Virginia. Leslie and I met Angela West, 2015 Miss Wheelchair Virginia and Asian Cultural Broker for the Center for Family Involvement at Virginia Commonwealth University. Angela and Leslie instantly connected and they shared stories about the pageants. Angela wants to mentor Leslie to participate in the 2016 Miss Wheelchair Virginia Pageant. Leslie and I are both very excited for this opportunity. In addition, we obtained many resources to help Leslie work on important skills needed for all careers, no matter what pathway she takes.
A Very Special Day
Once every year, my family and friends celebrate a special holiday. We all get together to celebrate, and it almost feels like there is a magic in the air, an aura of brotherhood that encourages peace on earth and goodwill toward men.
I am talking, of course, about the annual Autism Society of Central Virginia 5K. …What did you think I was talking about? Christmas? It’s not even December!
…Anyway, I wanted to talk about my experience with this year’s race.
I woke up early that morning and went about my daily routine. Uncle Tim and Aunt Dana were already staying at my house so that they could participate in the race, and we had a sort of… breakfast arrangement on the counter. I don’t remember the details of what was there, but I knew that there were some Pirouette cookies in the arrangement, because I ate them.
Soon it was time to head to the starting square. I hopped out of the car and rushed to the site – and had to wait on everybody else. Many members of my extended family came, including Sam, the athletic child of my aunt Jan; Jason, the less-athletic but better-at-games son of aunt Shelly; and Brosef, aspiring lawyer and older brother of Jason. My friend, Chad Chaddington, and his mother also showed up to race with us.
When the race started, Sam told me he was going to race alongside me. Although he could easily leave me choking in his dust, he decided to keep pace with me because he didn’t get to see me very often. As we ran we talked about various subjects, such as the teaching of evolution in schools (Did you know whales evolved from wolves? It’s Troo! (maybe)).
After 35 minutes of running we finished the race. I returned to our starting point, feeling quite satisfied. Then I went to get a snow cone to replenish lost calories. I also saw my dad back at the starting point, and since I had never seen him pass me, I was naturally confused. He informed me that he was already back because he had never left. I was both relieved that I hadn’t been beaten to the finish by my father and rather disappointed in his decision not to run.
When everyone had finished the race, we packed up and headed back to my house to participate in the next, and most important, event: the after-race barbecue. As my family and friends came, I called Sam, Jason and Chad upstairs and I utterly defeated all of them at Super Smash Bros. we enjoyed a friendly game of Super Smash Bros.
That was how this year’s race went. I’m looking forward to next year’s race and particularly to seeing my friends again. I’d also like a camera to record the race; maybe I’ll get one for Christmas. See ya!
My husband, Scott, and I had the privilege of becoming volunteers for Miracle League last spring (2014). I saw a post online from one of my coworkers about her son looking forward to playing baseball through Miracle League. Right away I became very interested and began looking up information on how to become a volunteer. At first, we weren’t sure what to expect. Who would we be a buddy to? What exactly do we do to help? Will we be effective and make an impact on these kids? How will we be able to interact with them? However, after the first game, we became hooked! It was so much fun, especially seeing the kids interact and enjoy it! We saw the joy through the eyes of each child. Each week we came back, I continued to be a buddy to the same player. Her name is Sara. After playing a few games with her and talking, I knew she was the player I was supposed to be with each time. Before every game, Sara makes sure to look for me and give me a hug. We truly have built such a strong relationship that I cherish. She is such a sweet and energetic child. She always has a smile on her face and I love when she laughs! Every week I look forward to seeing her and her family. It’s almost like we have become a little family. Sara’s sister, Jamie, also plays on the team. She’s a go getter and loves to knock balls out of the park! We enjoy talking with her as well and getting to know her. Scott has become friends with another player, Casey, on the team. He enjoys being his buddy and talking to him. This opportunity has been such an awesome experience for the both of us. I always tell Scott that “this is my favorite part of Saturday.” It brings so much joy to us and brightens our day. I’m so thankful God led us to such an amazing place with amazing people. I wouldn’t trade this experience for anything!
As stated in my previous article, I have Asperger’s Syndrome, which slightly impairs my social life, but I am still capable of going through society with relative ease and minimal stares from passersby. I do know someone who is less fortunate than I am, though: my brother, Tyler Szymonik. Unlike me, Tyler has full-blown autism, so he has great difficulty speaking, interacting with others, and generally functioning in society at large.
Twelve years ago, our lives changed instantly when our vibrant and healthy three-year-old son suffered a traumatic brain injury. He fell head-first from a second-story window onto the asphalt driveway at our home in Powhatan, VA.