GOAL!!!!
By guest blogger & TACA dad Chris Benbow
“Dad, I miss hockey.” That’s what my 6 year-old son, who has autism, said to me a couple of weeks ago as we were getting ready for dinner. I can honestly say that I never expected to hear those words from him.
I’m a sports guy. I grew up in a neighborhood where the kids would meet at someone’s house after school and we’d play sports. From football to soccer to street hockey to the classic “kill the guy with the ball”, that’s what we did. We established our allegiances to our favorite teams and still root for them to this day. Growing up, I spent most of my weekends travelling around to hockey rinks in the Mid-Atlantic, many of those trips with my father. I didn’t appreciate those road trips with dad back then, but I see how valuable they are now. To this day, my dad and I talk about sports more than anything else.
In the winter of 2006 when I found out that we were having a boy, I immediately started thinking about those typical father/son experiences – having a catch in the back yard, teaching him how to ice skate, playing one-on-one in the driveway and letting him win, etc. Obviously there’s more to fatherhood than this, but it’s what I would think about waiting for my son to arrive.
Calvin (I’m an Orioles fan) was born in July of 2006. At 20 months old, he was diagnosed with autism. Before we brought him to the doctors, we knew that something wasn’t right, something was missing. He was disconnected. He didn’t have any speech. In fact, he had no way to communicate at all. If he wanted something, he would fuss or scream or cry until we guessed what it was, and we were ok until he changed his mind and wanted something else. After the diagnosis, we began a journey to get our son back by any means necessary.
My wife, Melody, started furiously researching to find anything that might help. We were engaged in traditional therapies and started incorporating other non-traditional approaches. Once we changed Calvin’s diet and started seeing a DAN practitioner, we saw positive results almost immediately. He was responding; there was life in his eyes! Melody also found TACA, which provided invaluable moral support and guidance, a much-needed life preserver in an ocean of fear.
While I was always an active participant in Calvin’s various treatments and therapies, there is a moment I will never forget that changed my role in his recovery. At the appointment discussing starting Methyl B-12 shots, Dr. Dornfeld looked at me and said “It’s Dad’s job to do the shots. Mom’s got enough; this one is your responsibility.” Not going to argue with that logic, I embraced the role and became the shot guy. I tried to share in as much of the responsibility as I could. When we did a round of HBOT, I was the guy. I would wake up early and do a session in the ‘spaceship’ before I left for work and then would do another session before Calvin went to bed. I needed to have that role with his treatment and recovery. Lying in a hyperbaric chamber for an hour might not be having a catch in the backyard, but I was able to connect and spend time with my son.
Calvin will probably never be a sports guy. I don’t foresee him wanting to go to or doing well at a Rutgers football game – way too loud and over stimulating for him. I took him to a hockey game and he got very excited when the players left the ice after warm-ups because he thought the game was over and it was time to go home. He wasn’t happy to find out that it hadn’t even started yet. But he knows what teams we root for. He will properly celebrate a Tottenham goal (jumping fist pump) and he might just interrupt his own activity to high five after a Cowboys touchdown.
However, here we are 5 years after his initial diagnosis, and Calvin is telling me that he misses hockey. The sentence came out of nowhere but is still quite significant. First and most importantly, my son is talking to me. There was a time I was afraid I would never hear his voice. Too often I forget this and take for granted where we are now versus where we started. Secondly, Calvin misses hockey. Getting up early and getting to the rink isn’t much of a chore, but keeping him on the ice for any period of time usually requires some negotiation. But it was the first year he was even willing to get on the ice so we’ll take what we can get.
The Bulldogs are an organization made for kids like Calvin. We accept all players, regardless of skill level or prior experience. We celebrate each and every accomplishment, despite how common it may appear to an outsider. We are a special hockey program designed to introduce and teach the game of hockey to children with special needs. We want to provide an opportunity to experience the game we love to individuals who would otherwise not have the chance.
With the help of the American Special Hockey Association, I got together with a couple of parents with special needs children and some dedicated volunteers and we founded this team. Every Sunday morning from November to March, we meet at a freezing cold rink that is only partially enclosed and have practice. What was an average of 17 players in our first year has grown to more than 30 in our third year, and I expect to have more in the upcoming season. It’s an indescribable experience to be on the ice with these players, seeing the smiles and the excitement. We celebrate all of the milestones, from standing on their own to putting a puck in the net to playing in an actual game. Parents see their children achieve goals they once thought unimaginable.
And I am now one of those parents. Last year, at the last practice, Calvin skated on his own for the first time without the help of a coach. Sunday mornings are about quality time spent together at a hockey rink, like I had with my father. My response when he told me he missed hockey? “Dude, I really miss hockey with you too.” I’m already looking forward to next season.
Editors note: Did I mention HOW MUCH we love TACA dads?! Well, I do. We do! The world would be much harder without them. Thanks Chris for your story. You have scored big time in our books!
Autism Dad: Am I a Unicorn?
By Guest Blogger & TACA Dad: Dave Fecak
Stories of autism moms have been shared and celebrated for years, and rightfully so. With a growing population of children being diagnosed on the spectrum, new autism moms are being inducted into this exclusive club every day. If ‘exclusive club’ gave you visions of velvet ropes, a VIP lounge, and bottle service, you’ve got the wrong club. Autism moms are more like the motorcycle gang on the other side of town, and as passionate and protective for their children as the gang is for their bikes. And if you even look at their bikes/kids funny, you may find yourself well-acquainted with the business end of a pool cue.
Autism dads are out there too, but with divorce rates and traditional custody arrangements being what they are these dads tend to have a much lower profile. Bumping into another dad at a TACA meeting or a conference isn’t four-leaf clover rare, but it is rare enough that there is an established yet unspoken protocol for when two dads cross paths – two to three seconds of maintained eye contact and a swift head nod (which can be optionally garnished with a blink) serve as both a gesture of goodwill and a mutual acknowledgement that autism dads are entirely powerless against their warrior mom overlords.
Autism grandparents are yet another less visible demographic, perhaps in divorce situations serving in loco parentis, and always the first stop for any fundraising (hint: they LOVE cookies). Autism brother and autism sister are helping out too, with autism aunt and uncle pitching in when they can.
I am, technically speaking, none of these people. I am autism stepdad, the unicorn of the autism family ecosystem. Remember that motorcycle gang I was telling you about? With the pool cues? I married one of them.
How rare is the autism stepdad? Let’s ask Google.
“Autism mom” – 95,000 hits.
“Autism dad” – 24,000 hits.
“Autism stepdad” – 4 hits.
Four. This is by no means a scientific experiment, but the results are still fairly incredible, considering that “Autism dachshund” graces the web more then 500 times.
When Deanna and I started dating, she made it clear that her daughter (already diagnosed and then three years old) Rosie would always be number one in her heart and that I would be no better than number two. Many moms may think that way, but warrior moms actually sit you down, look you in the eye, and say that stuff right to your face! As the child of a single mother who also had the protective instincts of a lioness I respected and understood her sentiment. I must confess, however, to being mildly put off when Deanna amended her statement in a follow-up phone call with the clarification that she also owned a comically giant Clifford-sized dog, relegating me to number three.
For most people, the feelings of parenthood start during pregnancy when the expectant mother takes certain precautions to care for her unborn, the couple adoringly view ultrasounds, and the future father may assemble a crib and make midnight runs for ice cream. At the moment of childbirth, true parenthood begins. Stepdads like myself with no biological children of our own typically start the evolution into fatherhood a little later on in the child’s life, and that sensation of parenthood has to develop gradually over time.
Being a stepdad was a bit awkward at first. I distinctly recall being at events with Rosie when she was four or five, and strangers would approach me to tell me how cute she was (see photo for evidence). My responses were less than graceful. Where biological parents tend to take these types of compliments with gratitude, this scenario was entirely new to me,. My instinct was that I can’t simply say thanks (as some sort of tacit acknowledgement of credit for her cuteness) based on her lack of my DNA. I usually went with something along the lines of “I know, isn’t it ridiculous?”
I remember the very first time I had what I felt was a parental moment. I dreamt that I was in a grocery store, pushing Rosie along in the seat of the shopping cart. There was a Jimi Hendrix song playing over the store’s sound system (in my dreams all grocery stores exclusively play classic psychedelic rock), and Rosie looked at me and said “Is this song by Big Bird? It sounds like Big Bird.” And I told her emphatically, “No, that’s not Big Bird. That’s Hendrix.” The dream was entirely unremarkable, except for the fact that at that time Rosie had not spoken more than a couple words, formed a sentence, or ever framed a single question. I learned a couple years later that my mother, who had no grandchildren of her own, had similar dreams where Rosie spoke (likely without the Hendrix).
Of course, I have had other parental moments that were less than glamorous. In the first few years, nights were always filled with mystery and suspense. Will she sleep tonight? Will we wake up to a flooding bathroom? Will she have her crib radio playing the same three lullabies on an infinite loop all hours of the night à la the world’s worst DJ? “DJ Rosie here spinning all your bedtime favorites! That of course was Brahm’s Lullaby, and before that Twinkle Twinkle and Baa Baa Black Sheep – coming at you next, by no one’s request, Brahm’s Lullaby and Twinkle Twinkle!”
I’ve been bitten and pinched enough for several lifetimes, and there were years where I probably lost as much sleep as I got. Some young children with autism have been known to empty the contents of their diaper, then to smear or throw their creation. This was our reality, and yes, sometimes it does hit the fan. That phase didn’t last long, but left an indelible impression. Just like other autism parents, I’ve seen (and stepped in) things.
To any aspiring autism stepdads, it’s not all feces and insomnia. You are going to learn so much. If you like acronyms (and who doesn’t?), you are in for quite the treat! It’s a little known fact that autism moms and dads communicate primarily using letters. An ASD DX may result in EI in the form of OT, PT, or ABA, then in an IEP fighting for an LRE, eating GF/CF, leaving you to ask yourself “WTF?”. So yeah, there will be acronyms.
When autism moms discover that you are an autism stepdad and not an autism biological dad, your stock may rise a few points. The moms will whisper, “He’s so good with her. Did you know that he’s not even her real dad?” You may be portrayed as a knight in shining armor on a white steed, coming to the rescue,which of course is not true but a vast improvement from the reality of chubby guy in a track suit driving a minivan. The single autism moms may view you as some semblance of hope that they, if they so choose, will find a partner to share both the victories and trials that come with raising a child with autism. Single autism moms love their kids too much to ever settle.
I must confess, becoming an autism stepdad was never an item on my bucket list. You fall for a girl, you meet the daughter and the autism and fall for the package, you begrudgingly accept the giant dog, and there you are. The experience over the first seven years has taught me much about humanity, humility, patience, and the ability to love someone unconditionally who may not always seem to love you back. Like many, I never expected to be a special needs parent, but I have never regretted the decision.
Editors note: we love TACA dads. We are continuing our stories leading up to Father’s Day. The world would be much harder without these great, hard working dads. Thanks Dave for your story. We are happy to have you on our team.
Finding My Voice: you can recover from autism
By Leya Aronoff
My name is Leya. I am 16 years old and will be a senior in high school next year. Today, I would like to share with you something special about myself.
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When I was two and a half, I was diagnosed with autism. At the time, fourteen years ago, there weren’t many programs specifically for autistic children readily available. I attended a special education preschool, where I learned my first words. In 1st grade, when my classmates learned to read and write, I couldn’t. During that time, we found out that I also had dyslexia. Reading was so hard for me that after attempting to read two or three sentences, I would burst in tears. My parents tried to resolve the problem by taking me to an intensive reading course, which didn’t help very much. This problem lingered until the end of 2nd grade. My parents came across a therapy program, which is a series of exercises that stimulate the senses, and were tailored specifically for autism. This helped me more than anyone could imagine. After six months of the program, I started to catch up to my classmates, and learning how to read wasn’t physically painful anymore. I continued on the program for almost a year and a half. Slowly, other aspects of my life started changing as well. I started eating more diverse foods and being in loud places or new situations stopped being scary. My earliest memories are from when I started this program. In fact, I don’t remember anything before 2nd grade.
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By age 13, I had overcome most of the symptoms of autism and dyslexia, but I hadn’t found my “voice.” Sure, I answered questions and talked to people. But I couldn’t talk to people about my feelings and opinions and realizations. I hadn’t figured out how to show or express these things in a way that would make people understand.
In 8th grade, my family went on a ski trip. At that time, I had been homeschooled. So, one of my assignments was to write a descriptive essay. Naturally, I looked out the window, saw the snow-covered mountains and skiers, and thought about writing about skiing on a mountain. After I finished writing, my mom (my teacher), took it and corrected little mistakes here and there. Then, she took another look through it and said, “You know, your essay has a rhythm. If you cut the lines shorter, it can be read as a poem.” And that is exactly what I did. Out came my first, wonderfully-written poem. Knowing how I struggled with reading and writing earlier in my life, I was stunned by the fact that I just wrote a poem in the first place. This is how it went:
Up the chair lift
Cold creeping up on you,
Numbing every part of your body.
Takes hours for it to wear off
So it seems
While hanging in the cold,
You seek the better skiers
Skiing beneath you
With grace and aggression blending
Feeling happiness and joy as they go
Finally, off we go
Feet on the ground again
Brings your power back
Looking for the place to go,
Not too easy, not too difficult
With powder, but not moguls
Groomed, yet not icy
With fresh snow, not slush
We choose, we go
Down, down through the snow
Trails show the way
Trees keep the boundaries
Smelling the fresh snow
While fresh cold air hits your face
Skis carving snow
Joy and happiness on the skis
Make you feel powerful
Make you feel unstoppable
Make you feel professional
All of a sudden,
One little hesitation,
One little ditch,
One little mistake,
And you take to the ground
Tumble after tumble
Seeing only whiteness of snow
The sound of your breath
The pounding of your heart
Then, it stops.
All the aching
The pain
Snow in your cloths
The cold
No skis on your feet
The panic
Power starts to fade
The weakness
Moments later
You find your skis,
Snap them back on,
Ski the rest of the way,
Down to the chair,
And you go through it
All over again.
Once I got home from that trip, I dashed straight for the computer and wrote poems all day. I had found my voice. Every time I finished a poem, I felt amazing, like I just got let out of my cage. My poetry unlocked a door that no one, not even myself, knew was there.
Now, writing poems does so much for me. It helps calm me down. It helps me figure out what is actually going on in my life. It helps me find myself in times when I feel lost.
Here is an example:
The World
Whenever the world feels like
There is no room for you,
You don’t belong,
Or nothing seems to work out,
That’s when you need
To stand out the most.
And show yourself to everyone
Let them know you are unique,
Special, one of a kind
Make them want to be with you,
Learn from you,
And even look up to you
Because you are special
You are your own person, and no one else
And you just have to know the person you are
And believe in the person you want to be.
Because you are the only person who can
Show the world who you are.
I have spent half my life without communication. Only three years ago did I find my “voice.” I believe everyone has a voice. If you haven’t found yours yet, it isn’t too late to start looking. Even if the barriers between you and your voice seem impossible to overcome, you have the power to find it in yourself.
Your “voice” can come out through anything, not just through spoken or written language. It can be expressed through dance, sports, visual arts, photography, film, music, or even through fashion. It can be shown in more wacky, non-conventional ways, like bouncing on a pogo-stick or making strange concoctions of food. It doesn’t matter how far-fetched or seemingly crazy your idea may seem, as long as you can express yourself while being safe and respectful, then that is all that matters.
Since I found my voice I made a resolution to share my story with the people who need it. To help others who are still searching. I started an inspirational blog on Tumblr: AndSeeWhereItTakesYou.tumblr.com. If you too need some happy thoughts and encouragement from time to time it’s a great place to get some inspiration. I also took my story to the stage at TEDxYouth in Hollywood. Please watch: You Only Live Once
Being autistic is not your final destination. It is just another milestone in the journey of being alive. It only means that your “voice” is hidden somewhere in the fog of your brain. But through hard work and believe in yourself your “voice” can break free.
Now, it’s your turn to believe in your inner “voice,” let the world hear it, and see where it takes you.
Editors Note: I am so proud of Leya. She is such a strong positive force for families and individuals living with autism. She truly has shared her personal story and feelings to help educate and empower families. I admire her success story and triumph over coming obstacles. She has such a promising future and I cannot wait to see what she does next!! ~ Lisa
More recovery stories can be found on the TACA website: https://www.tacanow.org/category/family-stories/recovered-from-autism/
The DSM-5 Nightmare
By Lisa Ackerman
Since 2011, TACA has been warning families about changes proposed to the diagnostic guide used to detect autism (formerly known as the DSM-IV). The DSM-5 is the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders released at the American Psychiatric Association’s Annual Meeting in May 2013. This is a list of all the articles we’ve published since we heard of this change:
A Physician’s Perspective on the Proposed DSM-5 Autism Diagnostic Criteria
http://tacanowblog.com/2012/02/15/a-physicians-perspective-on-the-proposed-dsm-5-autism-diagnostic-criteria/
Diagnostic Criteria Changes: What your family needs to know
http://tacanowblog.com/2012/01/25/diagnostic-criteria-changes-what-your-family-needs-to-know/
DSM-V Goes Forward: Major shift in diagnostic criteria for Autism Spectrum Disorder approved
http://www.tacanow.org/family-resources/dsm-v-goes-forward-major-shift-in-diagnostic-criteria-for-autism-spectrum-disorder-approved/
DSM-5 Last call to action http://www.tacanow.org/blog/dsm-5-last-call-to-action-proposed-changes-in-the-autism-diagnostic-criteria/
We rang the first warning bell in all the autism community in December 2011: http://www.tacanow.org/family-resources/autism-vs-aspergers-syndrome-diagnosis
We participated on sub committees to provide feedback. We asked for a call to action for all parents living with autism so they could voice their opinion.
Sadly, the DSM-5 is a reality. Thanks to Holly at TACA, we have a new article that outlines issues on its implementation for families. We encourage you to please read it and share: The Controversial DSM-5 has been released: How to safeguard your child’s services:
https://www.tacanow.org/news/the-controversial-dsm5-has-been-released-how-to-safeguard-your-childs-services/
The autism community already faces so many challenges. The announcement of DSM-5 is yet another kick to the gut and a serious hurdle for many families.
Who is Dr. Bernard Rimland?
By Lisa Ackerman
I am an old timer. Jeff was diagnosed with autism in 1998. Some folks have more time in this journey while others have less. There are several reasons why my family formed TACA; first, my son Jeff and the other was Bernie.
Who is Bernie? Bernie was like an uncle to me; a great and knowledgeable person I sought for advice and answers. Bernie treated me like family and worked tirelessly for a most important cause. Dr. Bernard Rimland changed EVERYTHING about autism for the better.
In 1998, I was frantic and needed help. I came across a phone number which I called and I recall that Dr. Bernard Rimland spent over one hour on the phone with me. By the end of the call, I felt hopeful. Wait! I felt more than hope—I felt empowered.
As it turns out, I learned that Holly had the same experience and it was then that I knew that I was not alone. The “old timers” like myself and Holly have countless stories of others like ourselves that have had the fortunate experience to have come across Dr. Bernard Rimland. Quickly, Holly began to refer to Dr. Rimland as the original “Hope Whisperer”.
By the time I had spoken to Dr. Rimland, several doctors had told my family that my 2 ½ year old should be placed in a “home.” After talking to Bernie, I knew that was not true and autism was not a “game over” diagnosis. That simple call changed my life forever.
I have always wanted to write about Bernie for years; however, each time I tried, I began to shed tears. I truly miss him. Dr. Bernard Rimland passed away on November 21, 2006. It still seems so unreal that he is gone; I can only imagine how his family feels. Dr. Rimland’s inspiration was his son Mark who was affected by autism.
In the early 1950’s autism was blamed on bad parenting. Mothers were described as “refrigerator moms”, a term that described mothers who were cold, unable to form any real connection with their children. The scientist who reported this hypothesis was later dispelled by one amazing man: Dr. Bernard Rimland. He knew this was a completely false theory. His wife Gloria had always been kind and loving towards their children. He set off to prove that theory wrong and change the view that bad parenting was not to blame for a child developing autism.
Dr. Rimland founded The Autism Research Institute and The Autism Society of America. Over four decades, he gathered hundreds of scientists to look at autism and find potential causes, treatments and answers. He united thousands of families under one premise: autism is treatable. He became the godfather of the autism medical movement.
It’s fitting to share this post about Bernie before Father’s Day. He was the ultimate caring dad to his son Mark and thousands of kids like mine.
Here are some videos about Dr. Rimland’s life and inspiration:
https://www.youtube.com/watch?v=t55oeQBx4VA
https://www.youtube.com/watch?v=UUI1k_boOpY
Here you can find many tributes to Dr. Rimland’s work: http://www.autism.com/index.php/about_rimland .
Bernie’s number is still on my cell phone’s contact list. I cannot push myself to delete his phone number. There are many times I pick up my phone looking to call Bernie; I truly miss his voice and guidance.
Bernie has been a constant driving force for many of us in the autism community. He challenged us to do the right thing and fight seemingly insurmountable odds. Today, he is still my “North Star”.
These are two treasured items I keep in my office; I look at them daily.
Bernie collage & daily reminder Bernie’s DAN! Conference 2005 Introduction Notes
My message to families living with autism: If you appreciate groups like TACA, you need to know who Dr. Bernard Rimland was and continues to be in our community. He taught us so much; therefore, his legacy and work must live on.
Will your access to compounded medications be restricted or denied by a new Senate bill?
Do you obtain compounded medications for your child?
Do you work with a doctor out of your home state?
If you answered yes to one or both of these questions, please read on. There is a potential Senate bill that could greatly affect your family.
First some background: You have may or may not have heard that a rogue pharmacy acting like a manufacturer, the New England Compounding Center (NECC) in Massachusetts, apparently violated numerous state and federal laws and distributed contaminated medications that, sadly, resulted in the deaths of more than 50 people and made many more gravely ill. We all want our medications to be safe, and we applaud those who look out for our safety and the safety of our children.
What is at stake: Legislation that has just been approved by a U.S. Senate Committee in Washington to address the NECC situation, S.959 has far-reaching implications for the Autism Spectrum Disorder (ASD) community and for others who depend on compounded medications. Whether intended or unintended, access to important compounded medications that are used to treat children with ASD could be restricted or effectively denied by S.959. This is largely because, under this bill, the FDA is given expansive and unchecked authority to control the compounded medications we depend on.
What this bill will affect: This new bill, S.959, could directly affect your ability to obtain sterile medications such as Glutathione and Methyl B12 for your children, especially if you get your medications from a compounding pharmacy located in another state. But it can even affect the availability of the sterile compounds you get within your own state. Moreover, the doctors who treat children with ASD may not be able to work with the pharmacies they work with now.
Now some of the details:
- If S.959 passes as written, many compounding pharmacies that now serve the ASD Community may be forced to either (1) stop compounding sterile medications altogether or (2) eliminate interstate sales of sterile medications.
- A new type of entity that the bill creates, called “compounding manufacturers,” will be able to sell sterile medications across state lines. But they will concentrate on large volume markets like hospital drug shortages and not on special needs patients like children with ASD. They would be prohibited by the law from filling prescriptions.
- The FDA gets far more authority over non-sterile compounded medications (pills, tablets, suspensions, creams, etc.). If your child needs a version of an FDA-approved drug, with preservatives, gluten or sugars removed, FDA would have the authority to make your doctor justify the compounded variations you need. FDA could require burdensome new paperwork.
- FDA has the power to remove compounded medications from the market if they don’t think they are appropriate.
The bottom line: Your medication options could diminish; you and your doctor may not be able to do business with the compounding pharmacy you currently use; and your costs could go up significantly.
It only takes a few minutes to voice your concern: Please pass this information on to others. We encourage you to contact your elected representatives in Washington, D.C. and let them know of your strong opposition to S.959 as it is currently written.
To connect with your members of Congress and for a sample email to send, visit www.protectmycompounds.com.
We Salute You
By Lisa Ackerman
Raising children diagnosed with autism can be an enormous challenge. What’s harder? Raising children diagnosed with autism while you have a parent in active military duty.
Many love Memorial Day weekend to enjoy extra time with the family. We must never forget the importance of this day and what it represents.
At TACA we salute all families in active or past service this Memorial Day. We appreciate what you have done for our freedom. We give an extra salute to the families living with autism in the military. You exemplify the word: hero. Thank you all for your service to this great country.
TACA is proud to offer support these resources for families in the military:
http://www.tacanow.org/family-resources/military-resources/
Thank for your service and your sacrifice.
