Part 3 of Hope: Pass It On
about the authors:
Paul and Trisha Petersen have five children from the age of 28 to their youngest Owin who is 6. Owin, who has Duchenne Muscular Dystrophy (DMD) and Autism Spectrum Disorder (ASD) is 6 years old. You can follow Owin’s journey on Facebook and also by scanning the QR code at the end of this story.
Nonverbal and Brilliant
Fast forward a few years, past the adjustment period, the start of steroids and the other medications. Past the thousands of posts, stories, studies and the countless pages of medical jargon we learned to digest, and here we are.
So back to the question at hand. What is it like raising a child with DMD and ASD?
Well, Owin has the ability to put together 100 piece puzzles and loves to explore and take apart things to find out how they work and then put them back together again. It’s amazing.
But there are special challenges for sure.
One of the biggest challenges we face, is understanding Owin’s limits and the tells that he shows. Because Owin is nonverbal, he obviously can’t tell us that his legs hurt or he is getting tired or hungry, so we have to be tuned into to his body language and interpret the meaning of his gestures, grunts, screams and coos.
Being nonverbal, however, does not mean Owin isn’t intelligent or that he cannot communicate. In fact, he is a brilliant little man and he has his own way to communicate.
When Owin wants to watch TV, he will hand us the remote. If he wants a specific show, he will grab the remote and make us pick him up so he can choose the movie or show, down to the exact episode, that he wants to watch.
When he is hungry, he will pick what he wants, usually from what we call his “Red Food” category. Lasagna, spaghetti, nuggets with catsup, chips with chamoy, etc.
If he wants to leave the house, he will grab his back pack and his hat. If he makes us grab extra sippy cups, it means we are going for a walk. If he points at where the keys are hanging, we are going for a drive. It is just for us to decern where, which he will guide us.
A great adventure where we learned just how smart Owin is, came a few months ago.
Owin grabbed his hat and backpack and pointed at the keys. Of course we also took along his beloved box of Natures Bakery Fig Bars. It travels with us everywhere (more on that to come).
We loaded Owin in the car and he proceeded to point and gesture us to turn here and there. Over 7 miles and 13 turns, to take us to Sam’s Club. Once inside, Owin, guided us to the cereal Isle to get himself another box of Fig Bars. This particular box has been through 4 states and many adventures with Owin. Being in tune with his signals helps us to help him and makes our lives a bit easier.
We have our daily struggles and so many must do routines and idiosyncrasies such as having his Natures Bakery Fig Bars as his security blanket. (Really, Natures Bakery should be sponsoring us with the times we post about their product.)
I hope we were able to answer the questions.
Even just a little glimpse into our daily lives has been overwhelming to many people in our circle. Even though we don’t get out much, we do have a fantastic emotional support network with family and a couple of close friends.
Owin can be a lot to take in at times but when he comes and wraps his arms around you and gives you a strong hug and a snuggle, it makes everything fall into perspective and place. It makes you realize what unconditional loves is and it renews your strength and vigor to keep going.
We all are fighting for a better life for our children and we as parents, caregivers, advocates and family members in the DMD community are living on a shoestring of hope of things to come.
Hope is what drives us, hope is what binds us as families and as a community. We wake up every day with hope in our hearts. Hope for a good day without a meltdown. Hope that today isn’t the day he will stop walking. Hope that today is the day, that a cure is found.
Hope, pass it on!