Archer’s Story

“When Archer was almost 2 years old, (21 months by nursing mother’s metric), he lost all gross motor skills. He was right at the point where he started running and jumping off the floor with both feet. But at 21 months, all his progress abruptly stopped. 

It was October 1, 2019. Archer had just gotten cochlear implant surgery. The surgery lasted five hours and he was under general anesthesia. Archer was not waking up like expected. They wanted to keep him overnight to monitor him. The anesthesiologist told us he should be walking before we were discharged, that he should not have been taken off IV after surgery and the person who prepped us for the surgery gave us the wrong duration of time to stop breastfeeding Archer before surgery. It should have been 4 hours pre-surgery, not 6 like the person said. 

Archer was still exclusively breastfed at this point because he refused to eat whole foods. I was pregnant with my third child, absolutely fearful that this stress would cause a miscarriage like my second pregnancy. My milk was drying up as my body’s resources were dedicated to nurturing another baby, so Archer was losing weight at an alarming rate. 

It was October 14, 2019. We drove 70 miles to the nearest children’s hospital. Archer had a weird discharge in his diaper, he couldn’t stay up long enough to nurse properly and when he stood up, his legs quivered under him. In those two weeks post-surgery, he hadn’t walked. He couldn’t even stand. At 2 a.m. Dr. Eric held up the World Health Organization weight chart and told us, “your son is not even on the chart, he’s starving according to these numbers. Based on his blood work, he’s also malnourished. You can leave the hospital when he is on the chart.” I heard the threat in his words. If we tried to leave the ER, they would call Child Protective Services on us for negligence. 

Around 10a.m. that morning, I’m yelling at a nurse, “He just had surgery on both ears!” She is about to hold the sides of Archer’s head, still fresh from surgery, so that another nurse can shove the NG-tube up his nose and into his stomach. We would have to give him tube feeds until he started eating with his mouth. The Gastroenterologist, an occupational therapist and two different speech therapists told us nothing was physically wrong with him that would stop him from eating. It was most likely a texture-based issue. 

During that stay, Archers legs were so swollen with IV fluid. I took him to the playroom every day, but he could barely move. There was a glimmer of hope when I saw him stand up to play in the kitchen and he moved one leg to push the shopping cart. I have to buy these toys for him when we get home, I thought. 

It was October 23, 2019. I explained to the cochlear implant surgeon that between October 1st and October 14th, Archer’s weight hadn’t shifted much-and the ER doctor said that Archer was starving according to WHO charts. “Why would you operate on a starving child?” I asked him. “Well, I thought if we kept him on fluids, he would be fine,” he replied. “So, you knew there was a risk. Why didn’t you tell us? I asked you what you thought about his declining weight in the pre-surgery appointment, and you said there was nothing to worry about,” I pointed out to him. “Yes. I knew it would be bad, but I didn’t think it would be that bad,” he justified himself. My son could have starved to death on his watch. When I reported him to the Board of Physicians, they said I didn’t have enough proof to back my claim.

We got a home health nurse shortly after the NG tube was placed. She would administer tube feeds and care for him. She helped stretch his legs and encouraged him to push the shopping cart. 

It was November 14, 2019. The nurse wasn’t careful. Three days after a GI surgeon placed a gastronomy button (or g-tube) in Archer’s stomach, she stepped on the feeding bag line connected to his g-tube, forcing his button out. Only the surgeon could put it back because the site was still fresh. She came with me on that 70-mile drive to the ER. I fired her that week. 

In the following weeks we began working with our second occupational-feeding therapist in the hopes that she would have a breakthrough with Archer. During her last seven visits, I witnessed her try the same technique with Archer, losing his trust with every try. “I don’t think that’s working for him,” I gently said to her on her second to last visit. “Well sometimes, we have to be the villain,” she shrugged. “You’re losing his trust,” I told her at the last visit. “Well, I can’t help him anymore. You should try another therapist,” she huffed. 

At that time, Archer still wasn’t running like he used to nor was he jumping. Archer was overly cautious and unwilling to take risks. His doctor didn’t think he needed physical therapy. Before having children my husband and I agreed we wanted our children to be confident and know how to defend themselves. We figured taekwondo was a way to achieve this. Once we discovered Archers Deafness, we thought it was even more necessary for him to feel confident. Then, after hearing horrible stories of Deaf children having their hearing equipment stolen or damaged by bullies, I thought Archer especially needed to learn how to defend himself. 

Hoping to also help Archer improve his gross motor skills, we emailed a taekwondo place in the area where we lived at the time. They had an elaborate story on their website about working with kids with special needs. They noted their experience, had pictures of children in wheelchairs, and responded promptly to my initial emails and questions. On the trial visit, the instructor thought it would be better for Archer to sit out the first class and only watch. (Based on the email correspondence, I was under the impression he would participate in class.) At the end of class, the instructor tried to talk to my Deaf son. I explained his cochlear implants were not perfect and Archer couldn’t understand spoken language well; he only used ASL. Yet the instructor continued to speak to Archer. I offered the correct signs for the instructor to use so Archer could understand him. He did not pay attention to me and kept talking to Archer. Before we left, the front desk person said she would be in touch with me to set up a time for Archer to come for an actual trial class . . . And the very responsive front desk lady never followed up with me. 

We moved to Abilene two months after that and tried to find another place for Archer to take classes. Team Chip’s website seemed promising, so I emailed them with my questions and concerns. Glyn Ann did not shy away from Archer’s needs and said he only needed to be potty trained for sanitary reasons. I skeptically agreed to take him once he consistently used the potty. 

It was April 5, 2022. I took Archer to his first Team Chip class. He could understand more spoken language with his cochlear implants, and he was more comfortable with his g-tube. However, he would still not take many risks. He was scared of climbing and jumping off things. 

During class, I could not understand how they got Archer to jump from big heights, climb obstacles, and pay attention. Archer gained so much coordination those first few weeks. It was the first time I felt relieved. Some classes, Archer had to be carried. Some classes he didn’t want to spar with the other kids, so the instructor filled in. Not so slowly Archer came out of his shell. He began to look people in the eye more. He mumbled less. And even though he is still shy, he walks with his chest a little higher. 

In the beginning, we didn’t understand about character creed and stripes (students move up to the next belt rank by earning stripes, including memorizing/reciting a creed.) Archer learned the wrong creed for his first belt testing. His instructor said that it was fine. His instructor said he can say it or sign it, whichever he’s more comfortable with. Having dealt with so much pushback in the past with him using ASL (namely ENT specialist, teachers, and a couple therapists), I was shocked that the instructor would be so inclusive. 

After Archer would receive all his stripes, he had to ask an instructor to sign a belt testing card that approved him for testing day. I had Archer practice the phrase, “can you sign this, please?” We found an instructor to ask, Archer said his line. The instructor asked him a follow up question. I explained that Archer didn’t practice a response to that question. The instructor said it was fine. He signed Archer’s card. 

Archer made it through three testing’s when a new mom sat next to me. Her son was being carried by one of the instructors after beginning class with a meltdown. She looked to me and explained that her son was having a hard time transitioning. I laughed. I told her the only person here worried was her. I told her my son had to be carried through some classes too. I told her about a child who would roll on the floor. They carried him too. I told her how I had overheard a mom talk about her son’s physical developmental issue that Team Chip really helped with. The mom seemed relieved. “I don’t know how they do it,” she confided. We agreed, they have the patience of angels.

I have had to fight the education system, therapists, professionals, multiple medical personnel and sometimes even my spouse to make sure Archer got what he needed. But you know who I did not ever have to fight? The staff at Team Chip. 

I can name five medical professionals who dropped the ball where Archer was concerned. That’s one for each year he’s been alive. I can name five therapists or other professionals who I’ve had to go against and advocate for Archer. That’s one for every year he’s been alive. I can name five family members, friends or church members who disagreed with, judged, or scoffed at my decisions for Archer. That’s one for each year he’s been alive. I can also name five inappropriate or hurtful comments one of those people said to me about Archer’s situation, too. That’s one for every year he’s been alive. 

I can also name five staff members at Team Chip who took the time to ask and understand Archer’s situation. That’s one for every year he’s been alive. I can tell you five moments where a staff member went out of their way to connect with or encourage Archer. That’s one for every year he’s been alive. I can name five times staff members used ASL with him. I can name five staff members who expressed interest in and followed through with learning some ASL for Archer. That’s five more than any family member of ours . . .  It was only appropriate that we celebrate his 5th birthday at Team Chip. 

Before that birthday party, a friend of mine, who is a therapist herself, prepared me. She said she’ll bring her son, but he might not participate due to his social anxiety, which she is working on with him. At the party, I noticed she was by herself, and her son was fully involved in the activities. She asked me if you had to be a member to host a birthday party there - she expected she knew where her son would want to celebrate. We talked more about the program. She asked me how often Archer came to classes. She said she might need to consider enrolling her son. In less than an hour, her son went from clinging to her side to jumping around without her having to hold his hand. That was more than she expected of her son at a birthday party. 

I can name so many instances where instructors really went above my expectations. (For example, the handful of times I walked in carrying my sleeping daughter, someone magically appeared to help Archer get his shoes off and tie his belt.) The little things add up. 

Since I first emailed Glyn Ann about Archer taking classes, her only concern was getting him through the door. Since then, they have done more than I could have ever asked for when including Archer-down to considering incorporating ASL signs in their teaching. They don’t just have a heart for kids who are different, they have the drive to work with the issues different kids present. Their expectations are high but reasonable. They don’t make Archer feel different even though he is. They simply adjust their technique for him and make no fuss about it. Their inclusiveness has earned my support.

Team Chip has my loyalty for good reason but more importantly they have my respect for how they treat children with special needs.”

by Erica, a Team Chip Mama