The Sunday Series (118), with Mark Brodinsky

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

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.

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.”

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.”

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.”

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.”

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/).

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.”