Part 2 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.
Hope: Pass It On
– read part 1 of the story here –
Autism + Duchenne
As with many on the spectrum, Owin can become over stimulated very quickly and that can cut plans short. He is also prone to frequent meltdowns due to the frustration of not getting what he wants, either because we said no, or because we aren’t understanding what he is after.
With the overstimulation aspect, well, we make it known to people upfront that we do things on Owin’s time. Meaning if we are at a birthday party or family function and he tells us he is done, it is time to go. Could be an hour, could be twenty minutes.
There are times that we are simply unable to attend an event because we know it will be too hard for Owin to participate or the area is not the safest “Owin Friendly” environment. There is a jumping castle or unfriendly play area that we know Owin will want to go on or in, but unless we clear the other kids out, it is just too unsafe.
Even if we attend, we have to hover over Owin every second to make sure he doesn’t stick something in his mouth or grab something that may hurt him or someone else which makes us miss most of the event we were there for.
Meltdowns and Triggers
The meltdowns, as with any child, can be frustrating to deal with for any parent.
Knowing the triggers are great because we can usually find a way to calm him down rapidly. Whether the cause is a big trigger or a little trigger helps us determine if he just needs a snuggle or does dad need to pick him up and sing to him (Hallelujah usually works) or does he need to go into a dark room with his headphones on and decompress.
With the miscommunication side, it can be much more difficult to navigate. We do not know what he wants or what the trigger is and he can’t tell us or covey with a gesture what he wants and it can be very frustrating for all of us.
More than once we have all been near tears and at our wits end trying to get through a major miscommunication meltdown and left feeling like we are failing as parents. It is here where we pull on each other’s strength and support, and pray.
Another aspect of Owin’s behaviors and conditions is that he requires almost constant care and attention. This makes it very difficult for us to have time together and can often put a strain on our patience and empathy for each other.
Quality respite care is hard to come by. Those we use have openly stated that they get overwhelmed while caring for Owin. We rely on family a lot and I feel like at times this is more a curse than a blessing. We seem to see less and less of those we care about, and sometimes I feel it is because Owin can be very intense.
On the other side of the spectrum, if Owin is comfortable in a place, he will strip down and go to take a bath. We were at an event for Hope Kids a few months ago for the premier of Disney’s Light Year. We got all snuggled into our seats and Owin got under the blanket and then tried to strip down. Needless to say, our plan was cut short.
Keyed into Everything
Other issues we deal with is how to limit Owin’s activities.
Again, he can’t tell us when he is tired or when he is hurting and once we start to see a limp, it’s far past when we should have stopped. At the same time, he needs to be a kid. He needs to be out there playing and interacting with the other children at school.
Of course, there are simple solutions to some of the issues. Long distance walks, Owin is in his wheelchair, activities that are high impact are avoided when possible or made to be much less impactful, and when he shows signs of fatigue, we stop. This is where we again have to be keyed into everything.
Mom in this case is phenomenal. She is his main caregiver and is so synced in to Owin, that even a minuscule little change in behavior gets her attention. We can’t say what is best for anyone else’s child but we feel like we have found a good balance for Owin and one that keeps us less on edge.
Wonder, Love and Joy
Owin is six and is still ambulatory.
Though we have seen some decline in him in recent months, trouble getting up off the floor, fatigued more easily, more frequent rest breaks, the main diagnosis we deal with at this time revolves more around the Autism, however the Muscular Dystrophy aspect of his life is never out of our thoughts.
Owin has had several surgeries already in his short life, including having a medication port placed. He receives weekly infusions of Exondys 51 and is on Deflazacourt daily.
But through it all, he lives with wonder in his eyes and so much love in his heart. He finds joy in things most of us take for granted, such as stopping to crunch a dry pile of leaves or the way he stares at a butterfly.
Click here for the third and final part of Hope: Pass It On.