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The Sunday Series (118), with Mark Brodinsky

August 21, 2016 By markbrodinsky Leave a Comment

It’s not always what you expect out of life, it’s about what you get, or more importantly what you are given.

What do you with the circumstances of your life defines who you are. The more love you love, the more you give and the more you buy into the belief that you will bend but not break, brings you strength.

No matter what you will overcome.

Life will give you what you need, if you just look at what you’ve got and be grateful. If there’s a secret to life, this is it.

Dive into gratitude and share your story to give others the ability to learn, to understand and to become more.

Everyone has a story.

I am Mark Brodinsky and this is The Sunday Series.


The Sunday Series (118): Full Heart

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At 22-years-of-age Jake Stirmer is living up to the best of his ability. Every day he’s giving everything he’s got to everyone he meets. It’s all you can ask of him because the best of his ability is defined by his autism.

As his mom Stacey will tell you, “if you meet someone with autism, you’ve met one person with autism. All are different, it’s a wide spectrum.” And in the big scheme of things why should this be any different from meeting someone who isn’t autistic, we are all different, each and every one of us. Jake simply has a uniqueness that makes him in need of a helping hand to survive in a world created by those, who for the most part, live outside of his own.

jake in bed

It’s a world which for more than two decades the Stirmer family has come to know well and to embrace. After all it’s Jake who has embraced them. “Jake is very, very affectionate”, says Stacey. “He loves me, kisses on me, hugs me, he definitely feels love. People even comment on it. And he understands more than people give him credit.”

It’s an understanding Stacey and her husband had to come to grips with after a visit to the library. Stacey remembers: “Jake was a very normal birth, he was the easiest child, almost scary easy, easier than my other two children. The first time I realized something was different was with his eyesight, he wouldn’t always focus on me when I called his name. The pediatrician got concerned around 15 months when Jake was not trying to walk. We visited a neurologist who told us ‘he couldn’t be autistic because he loves his mother and interacts with you beautifully.’  But not long after I was in the library and there was a poster on Autism Awareness Month, I saw the symptoms and I just knew. I went to my car and I just lost it…I called my husband and told him Jake has autism.”

associated_conditions_diagram

Testing, training and parental advocacy for Jake led him to be the first child to be funded for the ABA – Applied Behavioral Analysis in Howard County, MD. “It’s a process called discreet trial”, says Stacey. “A lot of repetition, ways of teaching the same thing over and over. For example giving a child a jigsaw puzzle with one piece missing, having him complete it, then taking two or three pieces away until they learn to do the puzzle. Or handling sensory issues. Jake doesn’t like to wear a hat. But you would put a hat on him for 10 seconds, wildly praise him, then do it again for 20 seconds, 30 seconds, etc until he could hopefully get comfortable.”

jake and siblings

Like any growth in life, like any challenge in which you desire to succeed, the parents of an autistic child seem to embrace the mantra of getting comfortable with being uncomfortable. It’s not just Jake who lives with autism, so do his family and friends. But everyone surrounding Jake is in Stacey’s words, “simply amazing”.

“With our other two children, (Jenna, now 28 and Corey, 25), we tried our best not to let them feel less important”, says Stacey. “They never showed any signs of feeling disadvantaged, they are great. The only part I feel they might have missed out on is our ability to travel. I’m not comfortable leaving Jake for more than three nights at a time. But we have a place at the beach and Jake has his own room and he loves it there.”

Jake also loves two special activities, swimming and bowling. Stacey says he taught himself to do both, and he simply loves it. He’s very trainable in a lot of things. He has worked in a garden nursery center, done some clerical work and janitorial work. But as his mom describes it, “it’s a whole new world in adult services, people forget, or they don’t realize these autistic children grow up to be adults.”

DSCN1877 jake and parents

Not only do they grow, but sometimes there are complications. For Jake and for his family, the new challenge arrived a few years ago when the seizures began. 

As Stacey explains: “He goes into full convulsions, full seizures. In school we had no idea he had any issues. But we got a call one day that he had a seizure for no apparent reason, another one happened at home. After tw0 seizures you are diagnosed with epilepsy. The epilepsy is easily the biggest challenge I have ever faced in my life. Once Jake started having seizures life turned upside down. He is 6-feet-tall and weighs 240-pounds. I can’t protect him when he seizes and he goes down hard. Jake is also on some strong drugs to limit the seizures and as they raise the dosage, there are side effects – issues with depth perception, dry mouth, headaches and more, all things Jake can’t tell me. And there is another drug he must be administered if he has a seizure lasting more than five minutes to guard against brain damage, because during a seizure you stop breathing.”

“It worries me when Jake is out of my sight that he is happy and healthy. Right now he’s in an adult program and as an adult he has legal rights, but in his mind he’s a toddler. We went to court to get legal guardianship of Jake, (as an adult). Without it he would not have been able to have certain medical procedures that are very important for his health. Without medical guardianship, Jake would not get his MRI or dental work. He would have had to consent to these procedures and he is not capable of doing so. The only way he can tolerate these things is under full anesthesia. Being the parent of a special needs child is a constant battle to get your child the services they need.”

IMG_5228 jake in hat

Even when that child becomes an adult – like Jake – and this is where Stacey says the funding is lacking. She says autism is the fastest growing developmental disability and the least funded. There are more children diagnosed with autism, then childhood cancer, aids and childhood diabetes combined.

And this is why, especially as the kids grow up, Stacey realizes more help is needed. She and her husband Lloyd created their own non-profit foundation, Voices For Autism. Their next fundraising event is coming up on September 24th at the Bethesda Blues and Jazz Club in Bethesda, MD. Stacey says they expect about 300 people paying only $125-a-head because they hope to raise more funds through sponsorship and a silent auction. (http://www.wearevoicesforautism.org/). Stacey says she sent out more than 4-thousand e-mails to companies around the world and has received tremendous response. 100% of the funds raised go to Autism Speaks, now in its 10th year, the world’s leading autism science and advocacy organization, (https://www.autismspeaks.org/).

voices for autism

It’s the advocacy that drives Stacey to make sure her son and others can get the best care. She also wants to empower others who are just joining the journey of raising an autistic child, as well as those who are trying to transition their child into the adult world. “I think it’s OK to feel bad, you have a new normal and embrace it and make the best of it. People would say to me ‘how do you handle it?’ I would say how the hell do you not handle it? It’s your child, imagine your child got into a bad auto accident, does that mean you are not going to be a parent anymore? I think it gets easier once you adjust to your new normal. It’s OK to feel bad sometimes and to ask for help.” Stacey says the classic essay by Emily Perl Kingsley helps to put it all in perspective: (http://www.our-kids.org/archives/Holland.html)

You can also read more about Jake and the Stirmer family’s experience in a book written by Tammy Barnes Bowers and eight other authors appropriately titled, A Journey of Hearts: Navigating Heartfelt Life Experiences, (https://www.amazon.com/Journey-Hearts-Navigating-life-experiences/dp/1457532735). The chapter on Jake and his family is called, Full Hands and Full Heart. As Stacey describes it, “everyone says you have your hands full, but you should see my heart, it’s just as full.”

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Until next time thanks for taking the time,

Mark

Donate to Voices for Autism: (http://www.wearevoicesforautism.org/)

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Author: The #1 Amazon Best Seller: It Takes 2. Surviving Breast Cancer: A Spouse’s Story
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Mark Brodinsky
Emmy Award Winner, 1996

Ever thought about writing a book? check this out!

Blog Reviews

Love seeing new blogs hit the ground running like this one (by a dad no less), but I also urge anyone vaguely interested in blogging to stay tuned, I am. Good luck on your journey – glad that I am along for the ride.

Rachel Blaufeld

Great blog Mark! I always appreciate reading what you have to say. You are very gifted and talented and hopefully someday you’ll not just blog, but write a book.

 Stephen Koncurat

I’m definitely along for the ride. We’ve all seen how much damage the written word can inflict. More positive writers are needed. And I love how you are using your personal experiences – those with your wife and children – and your gift of writing to open eyes and to inspire others.

Victoria Endicott

Absolutely beautifully written! The girls in your life must be very proud of you. Thanks for sharing Mark, I look forward to reading more!

Gina Glick Jolson

Very shortly this site will be famous amid all blogging and site-building users, due to it’s pleasant posts.

Leila Galloway

Absolutely beautiful! Are you at all thinking of penning a book? You’ve got a fan base out there that really thinks you should Mark. You write so eloquently. Glad that I got onto this site.

Marilyn Lefkowitz

Mark, You are truly a gifted writer and obviously, a special father and husband . Always a delight to read your words.

I’m speechless…beautiful words flow from your heart just like a gentle waterfall into a tranquil stream… thank you so much for the friend request I was blessed the day I clicked confirm.

Lynne Turner Dorsey

From your first writing in 4th grade entitled “People” which was published in the school newspaper, you have always been able to write. Never more so than when you started “Caringbridge” and now your blog, everyone who reads says what a wonderful writer you are. Our DREAM for you is to become an author and encourage people every day. You are by the far the best and we hope and pray you reach your dream.

Bonnie Brodinsky

I know you always thank us for reading but I would like to say thanks for writing.

Stuart Abell

Great piece. You are an inspiration!

Rob Commodari

Mark I just wanted to let you know that you are succeeding in your “ultimate goal”. I have gained so much from your blogs. I look forward to reading them for the special lift that they give me. Thank you.

Amy F.

I love waking up and starting my day with my coffee and your blog! It a great way to start my day with positive uplifting thoughts!! It puts me in a positive frame of mind throughout the day and allows me to reflect on my personal life, make changes, and grow !!!

Gayle Blank

You are quite talented Mark. Thanks for sharing!

Cynthia

I always look forward to your Blog Mark. Thanks for sharing and as you always do, make it a great / remarkable Day!

Chuck Connolly

Thanks for your Blog Mark. It is fun, encouraging and a nice break from a day full of ups and downs.

Jackie Hetrick

With my busy schedule, there is (sadly) little time for reading. But I have two must-reads every time I come across them, the sports section and your blogs. Keep inspiring and following your dream!

Ed Nemec

Mark, you are a truly remarkable individual. You do speak from your heart, I can’t wait to read your book. You are an incredible writer.

Debbie Press

Mark, I am glad I clicked on your post this morning, which lead me to your writing, your goal.
Would like to connect. This speaks to me.

Aileen Braverman

I can’t wait to read the book. I have followed all the blogs and feel so good that I know u guys. You make me cry but you make me laugh too. All the very best to you!

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WOW!!! It Takes 2 is a must read for anyone who has known someone diagnosed with cancer or other life threatening disease. This is the real story of a family lead by an incredible woman, Debbie Brodinsky, who took radical steps to beat the breast cancer beast. The story is told by her husband, Mark Brodinsky, through journal entries he kept starting with diagnosis through one year cancer free. This author's unique ability to pour his heart out onto the page draws you in from the beginning and holds you until the very end.

Thanks to Mark and Debbie Brodinsky for this gift...I have a new perspective on what it means to be a breast cancer survivor. You are a hero, Debbie Brodinsky!

TeeBThree
September 25, 2013

ittakes2_reviews_2

This book gives a heartfelt, in depth description of what it is like to go through breast cancer with the one you love. It is beautifully written and I felt as though I was living it with them! I highly recommend this book!

Jgs17
September 24, 2013

ittakes2_reviews_2

In It Takes 2, Mark Brodinsky windows us into his world where his wife, the cancer patient, is not the only victim. Part journal, part roadmap, It Takes 2 goes to the real humanity of facing the mortality of one's better half. Mark's candid perspective, love, and fierce intention resonate with hope in a story which is about much more than cancer. Mark himself is perhaps the most heroic character for the way he appreciates this life and so many of us in it...as he says, "thanks for caring."

Réné Pallace
September 24, 2013

ittakes2_reviews_2

It Takes Two: A Spouse's Story by Mark Brodinsky should be read by every person who is experiencing serious illness or injury or by a loved one of someone who is experiencing either of those situations. The book is an eloquent testament to the power of love and the healing energy derived from the belief that things will get better. There is not one word of "poor me" from the author or his wife who suffered breast cancer and the radical surgery she elected to have to beat the cancer. Rather, the book is a celebration of the courage displayed by them both in seeing it through.

The book also encourages readers to speak and write down their true feelings and be validated in them. John Mackovic writing in the Palm Springs, CA Desert Sun on November 2, 2013 quoted author and artist Doe Zantamata who said, " To be happy, you don't have to do anything new. You just have to remember how to believe again...Believe everything good is possible. Believe in your dreams. Believe in people. Believe in love. But most of all...believe in yourself." The author, his wife, their family and extended family and friends never stopped believing in his wife's recovery, and I think, in themselves. Read this book and believe.

Paul A. Riecks
November 4, 2013

ittakes2_reviews_2

This book is a must read for anyone with a family member with breast cancer. It takes you through the spouse's perspective from diagnosis to recovery. Mark journaled his wife's journey and put all of his emotions out there. It is beautifully written and inspiring to anyone going through breast cancer. Thank you, Mark for sharing Debbie's story.

Jmu1109
October 23, 2013

ittakes2_reviews_2

A friend recommended this book. This was a great perspective of a man standing beside his partner and passing along to the reader fear, hope, useful information and a broader story than his own. I loved Vinnie the tattoo artist. This is a great book. Thanks for sharing, Mark and "thanks for caring"

Blahsan

ittakes2_reviews_2

This book is a must read. What sets this book apart from other books about surviving breast cancer is that it is told by the husband and his point of view, not from the survivor. At times sad, at times poignant but even through the worst of it you can always feel the love he has for his wife, her strength and the strength of their extended family and friends. The posts that are included from their friends and family lets you really into the heart and strength of the family. I would recommend this book to anyone who is currently going through this, whether you are the person or the caregiver. I also recommend this book to anyone who has a friend that has been or is currently going through their fight now. It was an eye opener for me.

L. Bogash
Seven Valleys, PA

ittakes2_reviews_2

There isn't a shortage of books about breast cancer, but most are written from the perspective of the person who has battled cancer or a physician or other expert. What an enlightening experience to read about breast cancer from a husband and caregiver's perspective! Not only does the author give us insight into his wife's experience and emotions, but he openly shares and reveals his love, compassion, support, and, yes, sometimes anger at the disease as he stands by his wife's side during their journey to beat the beast. Your story may not be the same, but I guarantee if you have a loved one battling cancer, you won't go wrong reading It Takes 2.

 PattiM
September 25, 2013

 

ittakes2_reviews_2

From the moment I opened this book I never stopped reading. Mark invites the reader to come along on this journey that his family went through. I cried, laughed and learned so much. This book will give comfort and knowledge to those going through similar situations. Most importantly, Mark and his family never give up. They get knocked down and get right back up. They fought cancer together and with their strength, determination and will to prevail... They do!

 Jenny Schloss 

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Dateline, January 9th, 2013. The very first post ever on this blog, dedicated to one person. Back then the blog had a different title – Moments: Observations of Life: How did we get here?  Any one who has ever raised a child asks themselves that same question daily. Every story is different and every experience gives […]

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