Let me start from the beginning and share a brief history of the Miracle League. In 1997 a baseball coach observed a child in a wheelchair on the spectator side of the fence. It was a sibling to one of his players. He invited the child to play and quickly realized the obstacles he had getting around the clay field with raised bases. In 2000, local Rotary and Ruritans came together to raise the money to build the 1st field located in Conyers, GA. Miracle League currently has 250 chapters; we are in 44 states, Puerto Rico, Canada & Australia.
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:
Choosing a Guardian for Your Children
Who will care for your minor children in the event you and your spouse pass away? Have you put you desires in writing?
Many people put off making this decision, as it can be a very difficult decision to make. Firstly, is not a circumstance you even want to think about and secondly, the issues and logistics of deciding who could best care for your children are very complex. While an unpleasant task, I encourage all parents to discuss this and to put their decision in writing. Failure to do so can cause additional family strife and even result in court battles. Or, perhaps everyone will agree on an arrangement but it would absolutely not be what you would have wanted.
In Virginia, you may designate a guardian of your children in your will or in a separate written document. Please be aware that such designation is not a final rule of law. The Courts retain the right to place a child with another party if that is found to be in the child’s best interests. Also, if the other parent survives you, that parent will automatically be the guardian of the child unless it can be shown that would not be in the child’s best interest. While not determinative, your written wishes can be used by a court in determining placement and will often avoid a court contest by making your desires clear to your loved ones.
Meet Dr. Joe Niamtu
Dr. Niamtu is well known in international cosmetic facial surgery circles as surgeon, teacher and author and is regarded as a key opinion leader by academics and clinicians worldwide. He is a fellow of the American Academy of Cosmetic Surgery and the American Society for Laser Medicine and Surgery . He is board certified by the American Board of Oral and Maxillofacial Surgery. His practice is limited to cosmetic facial surgery. He has Cosmetic Surgery Procedures Certification from the Commonwealth of Virginia, Department of Health Professions.
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.
Disney Pixar’s ‘Inside Out’ is a delightful, most enjoyable film. This movie gives us
many opportunities for some important lessons on the nature of our emotions and
how to make sense of them. Learning to regulate emotions is an ongoing lesson for
the Builders & Gamers group at Autastic Avenues. ‘Inside Out’ inspires us to offer
our clients activities with some fun application as we work to increase executive
function skills, critical thinking and how to respond flexibly rather than react when
we deal with the unexpected in our daily life.
While sitting on a park bench during a playdate, I noticed my friend’s interaction with her daughter, born the same year as my daughter. Both girls had been playing in the sandbox, when they ran over excitedly to the bench to talk about what they had found. As they came over to us I noticed that my daughter’s running looked different from the other little girl’s. While each girl found similar items, Sally, my friend’s daughter, immediately told her mother she found a ball in the sandbox. Her mother hugged her and started to describe the ball (i.e. color, size). My child had trouble saying the word “ball” and she became frustrated in not being understood. We were unable to move beyond just finding the treasure and the frustration of not being able to discuss it.
Does this sound familiar to you? Although you shouldn’t compare your child’s development to other children, it’s okay to use other children’s development as a reference point. If you have experienced this type of scenario on multiple occasions then a talk with your pediatrician is recommended.
Children may have a delay or difference in many areas of development such as talking, walking, manipulating toys, or developing relationships.
Pediatricians have assessment tools that they use during office visits to determine how your child is developing. One example is the Ages and Stages Questionnaire (A&S).
Ages and Stages is a tool that may be used by parents, pediatricians, public preschools, and private child care programs to determine how a child is developing. Ages and Stages Questionnaire is available to parents on-line or through a paper format. Children may be screened from 1 month to 5 ½ years of age. Results are taken to the pediatrician’s office for scoring and interpretation. Your pediatrician will determine if your child meets requirements for further evaluation for Early Intervention Services or monitoring with educational activities provided by A&S’s with repeat assessment.
Me and Earl and the Dying Girl
Very recently, my mother took me to see a movie, Me and Earl and the Dying Girl. I was not certain about the movie (Oh, look, a movie about a girl with cancer! THAT hasn’t been done before. *cough* Fault in our Stars *cough*), but it turned out to be very good. Mom said that it would be a good idea to write a review of the movie, as well. I was also not certain about this activity (Oh, look, a movie about a girl with cancer! And I am reviewing it, despite never having done a movie review in my life! THAT should be easy to do properly!). Anyway, this is a new experience for me, so I hope that the readers of the internet will bear with me.
To begin, I will need to describe the plotline of the movie. (spoilers ahead) The movie centers around protagonist Greg Gaines (Thomas Mann), an invisible high school student with low selfesteem and a penchant for making parodies of foreign movies. He becomes fast friends with Rachel (Olivia Cooke), the titular “Dying Girl”, after she gets Leukemia. Unlike typical cancer movies, the focus is primarily on the lives, misadventures of Greg, Rachel, and Earl (R.J. Cyler). As Rachel’s condition worsens, the story focuses slightly more on her suffering and Greg’s attempts to make a movie to cheer her up.
All in all, I’d give this movie a 3.45 out of 4 stars. The movie was good enough to make me laugh (and cry (manly tears, mind you)), and it’s not often that movies elicit that reaction from me. I consider the ending a bit of a low blow, though, in that I feel that the movie is tricking me. To understand this, you’ll have to watch the movie yourself. Yep, you’ll need to buckle down and actually watch the darn movie instead of just listening to some 15yearold finagle his way through his first review. Honestly, though, the movie was excellent, and I highly recommend watching it.
Catch you guys later,
Cole is 15 years old. Cole has Asperger’s and is this site’s first young adult monthly contributor. Cole will write about a variety of topics. He will be starting Deep Run IT specialty center in the Fall. He dearly loves pet sitting, and is a total pet whisperer!
A dad asked me recently how I “do what I do every day”?
Do what I do? I smiled, but did not answer, it really got me thinking. It is what I know, or better yet, what I am continuing to learn “to know” every day, every moment and without a plan book .