PUZZLES & CAMO

SHELLY HUHTANEN

Living Through Uncertainty

As a military family who has experienced several moves, it is common knowledge that our son with autism will experience some sort of regression due to these moves… If it's hard for my son, I can only imagine how difficult the last four months have been for over 7 million children and their families.

According to the National Center for Education Statistics, there are over 7 million children with disabilities in schools, which translates to 14 percent of all students who attend public schools. These numbers do not factor in other children with disabilities that do not attend brick and mortar schools, but rely on therapies, such as occupational, speech, or ABA therapy. With the pandemic, most of these children have not been receiving services or support close to what they were receiving before the pandemic. Only more turbulent times lay ahead for these families because we have not even begun to factor in regression due to lack of services over the last 4 to 5 months.

As a military family who has experienced several moves, it is common knowledge that our son with autism will experience some sort of regression due to these moves. The only question we usually have is, how will he show regression. He may slow down his caloric intake each day that could eventually affect his weight. Even worse, he could refuse to eat some foods altogether that we had worked so hard for him to start consuming. His health is always our priority, but to witness our son doing SIB (self-injurious behavior) can be so defeating and at times make us ask ourselves if our family can handle another move. If it's hard for my son, I can only imagine how difficult the last four months have been for over 7 million children and their families.

These children may not have transitioned from one town to another, but they have transitioned from a life they knew to a new life they have not experienced before. They may be at home, but their parents are either trying to juggle their lives with muddling through curriculum they have not been trained nor prepared to teach.

The other night, I listened to a mother trying to care and educate two children with disabilities due to schools being closed: "I try to do the exercises the occupational and speech therapists advise me to do with my son, but I don't have their hands. I can't do what they do."

SAFE AT HOME: "Broden looked at me and smiled as he sat down with his tutor. "I'm not going anywhere. I'm right here."

As I listened to her frustrations, I kept thinking about her son and what he was thinking while he sat next to her in his wheelchair. The last thing he wanted her to feel was frustration with not being able to provide therapy to him. She does enough, but there is a common theme. We, as parents, are the ones who have to figure it out. We're the ones who are the last ones standing and it is up to us to give our children what they need.

Our family is on the fifth month of in-home services for our son. I would be lying if I didn't say I was a little jealous when I look out the window and I see neighbors planning little excursions to get away since school is out. I have to tell our typical son that he has to wait until the weekend for us to take a drive or go to the park because I need to be at the house due to therapy every day. I'm human and I'm allowed to feel that way at times, but I'm reminded that Broden is receiving what he needs. Not every family is able to experience this and for that, I'm grateful for what we have.

This morning after his tutor arrived, I happened to be sitting in a chair in the corner talking to my typical son while he laid on the loveseat in our living room. I glanced over and saw Broden jog down the hall, look over at our other couch, zoom past the kitchen and then back into the dining room where his tutor was getting ready for their next session. "Broden what's wrong? Are you looking for something? Mom? Mom is in the living room." I walked into the dining room, "Were you looking for me? I'm right here. I won't leave the house without telling you." He reached out to hug me. I told him I loved him and reminded him that I would be just down the hall. He looked at me and smiled as he sat down with his tutor. I looked back at him, "I'm not going anywhere. I'm right here."

In that moment, I knew it was all worth it. That feeling of contentment on his face is what all of us have been missing for four months. We have been living with uncertainty for quite some time now and what we really need is something we can rely on. We want to know what's going to happen next, but in reality, our future is still unclear. Are schools going to open? If so, what is it going to look like? When are the COVID-19 numbers going to stop spiking? When is a vaccine going to be available? It's a lot for anyone to process and it's understandable that tempers are flaring due to all of these uncertainties. Even though I don't have any of the answers to these questions, I was able to be there for my son this morning and deliver on a promise of always being there. I needed that. •

PUZZLES & CAMO

Shelly Huhtanen is an Army wife stationed at Fort Benning, GA who has a child with autism. She enjoys sharing her experiences of day-to-day life caring for her son with autism while serving as an Army spouse. She authored "Giving a Voice to the Silent Many" that encompasses many stories of raising a child with autism in the military. Shelly is passionate about autism advocacy for our military and works to bring awareness to our local legislators and command about providing better support for our military autism community, such as better health care and education.