The Adkins Family

/in , /by

Told by Lacie (Mom)

When I pick Jaxon up from Jill’s House, sometimes he tells me to “go home” because he doesn’t want to leave.

From the very beginning, Jaxon’s life has felt like a whirlwind.

Right before he was born, my brother passed away. Then, after Jaxon arrived, we received an after-birth diagnosis of Down syndrome. Doctor after doctor told us they were sorry. But there was one doctor who said something I will never forget: “These babies are born to families who can give them a whole lot of love.” I never forget her words.

Jaxon’s start was anything but easy. He caught Respiratory Syncytial Virus (RSV) shortly after he was born and spent about three months in the hospital. Doctors discovered holes in his heart, and at four months he had open-heart surgery. They warned us that his recovery could be prolonged because kids with Down syndrome often have low muscle tone. But within a week, he was back to being his wild little self.

We call him “Action Jaxon” because he is constantly on the move. He’s nine now and full of energy. He loves basketball, swimming, horseback riding, collecting eggs at my parents’ chicken coop, and anything outdoors. He also has Attention-Deficit/Hyperactivity Disorder (ADHD), so a lot of our life revolves around maintaining routines and helping him navigate overstimulation.

My husband and I both work full-time, and we have an older son, Sammy, who is five years older than Jaxon. Sammy is an amazing big brother, but—I’ll be honest—much of our attention naturally goes to Jaxon. For years, we had no respite options available. There are no childcare options for him where we live. I called everywhere and came up empty.

Then I found Jill’s House.

I don’t even remember how I found Jill’s House—maybe a Google search—but I reached out, and they instantly responded that they could accept Jaxon. I was so nervous about his first visit. At that time, he had a tendency to elope, and his behaviors were more elevated. I barely slept that first weekend, because I was sure I’d get a call.

But I didn’t. Instead, they told me he did great.

That first visit, I was able to take Sammy to a movie and just spend time with him. We rarely get true one-on-one time together. When Jaxon isn’t having a good day and gets overstimulated, we sometimes have to leave outings early. So having that uninterrupted time with Sammy meant everything.

Now Jill’s House weekends are part of our rhythm. When I tell Jaxon he gets to go to “camp,” he gets so excited. He tries to pack everything he owns into his suitcase, and I have to secretly edit it down. He especially loves the horses. He’s been obsessed with horses for years, and now he gets to brush them—and recently, he even rode one. He also loves basketball and seeing his favorite Jill’s House buddy when he arrives.

Meanwhile, at home, we get something we don’t often have: rest. We do things Sammy loves, like escape rooms or arcades. Sometimes we just stay home and binge-watch a show. And I sleep. I still keep my phone next to me, just in case. But I sleep through the night now.

When I pick Jaxon up from Jill’s House, sometimes he tells me to “go home” because he doesn’t want to leave. That secretly makes me happy. He usually falls asleep about ten minutes into the drive home, completely worn out in the best way.

Jill’s House has truly been our saving grace. We don’t have other resources where we live. Knowing there’s a place where Jaxon is loved like he’s their own child gives us peace I can’t describe.

If another parent asked me whether they should try Jill’s House, I would say: Just do it. If you’re going to trust your child anywhere, this is the place.

 

The Tatikonda Family Story

/in , /by

Told by Radhika (Mom)

Jill’s House has given Esha new experiences and greater confidence, and it has given our family peace and rest. When we pick her up, she comes out with a big happy smile every time. That smile says everything.

We are a family of four—my husband, my son, my daughter Esha, and me. My husband works in software, and I work for the local school district. Our son is 17 and in high school, and our daughter Esha is 13. Esha has autism and limited speech, but she’s very smart, very happy, and always smiling.

We first heard about Jill’s House from the DDA, the Developmental Disabilities Administration here in Washington State. Before that, we had tried other respite programs in the summer, but they didn’t work for her. When we heard about Jill’s House, we thought, Let’s try one more time.

At first we were afraid—Esha had never been away from us overnight. I made a social story for her so she could understand what camp would be like. I told her, “You’ll stay for two nights, and you’ll have fun.”

When I dropped her off that first weekend, I was nervous, but she had an amazing time. The staff were so kind and welcoming—they greeted her with big smiles and helped her feel comfortable. They texted updates during the weekend and sent a detailed report afterward. When I heard how well she did, I was so proud.

During the week, Esha works so hard. She spends all day at school, takes a short break, and then has three hours of ABA therapy every afternoon. By the time she finishes, it’s already seven o’clock—then dinner, shower, and bedtime. Her days are long and structured, and she gives her best effort. That’s why Jill’s House is such a gift—a time that’s all about fun.

Now Esha goes to Jill’s House Puget Sound every two months, and she loves it. The staff encourage her to try new things—like the zip line. She hasn’t quite done it yet, but each visit she gets a little closer to doing it. Her favorite activity is horseback riding. We never tried that before Jill’s House, but she loved it immediately! Now when we travel and have the opportunity for horseback riding, we know it’s something she’ll enjoy.

She also loves karaoke, music, swimming, and sitting by the campfire. Every time we arrive at camp, she grabs her bag, runs to her room, and starts unpacking! Then she goes straight to dinner.

Last September, Esha celebrated her 13th birthday at camp. I asked if I could send a cake and treats, and the staff said yes. They celebrated with her and sent me photos. When I showed her the pictures later, she smiled so big. Usually we celebrate birthdays at home, but this one was special—her “camp birthday.”

When Esha enjoys her Jill’s House weekends, sometimes the three of us take a short trip near camp. Other times we head back home for dinner, movies, and some quiet time. I call it “a break for everyone,” meaning that Esha gets a break from us, too!

The reports the staff send after each weekend are one of my favorite things. They tell us what she enjoyed doing, how she slept, and how they helped if she got upset. Sometimes they share which strategies worked to calm her down, like giving her a short break or taking her outside. Those new ideas help us at home, too!

Esha understands more than people think. Her speech is limited, but she remembers everything she loves. If I say, “Doctor,” she says, “No!” But if I say, “Jill’s House,” she gets excited and starts packing! She repeats her favorite words from the schedule—“campfire, shower, music, horse.”

Jill’s House has given Esha new experiences and confidence, and it has given our family peace and rest. When we pick her up, she comes out with a big happy smile every time. That smile says everything.

 

 

The Zwiebel Family

/in , /by

As told by Andrew & Kate Zwiebel

Jill’s House Weekend Adventure Camp is a place where Jack can be Jack, and we are so grateful that he has a place where he is welcomed and loved!

Jack…is…awesome! He is such a good-humored, curious, and good-natured kid. He makes us laugh a lot, like when he randomly puts on his blow-up dinosaur costume! He will often play jokes on us too, like playing hide-n-seek in construction equipment while we’re on neighborhood walks.

We were married in Lake Tahoe, Nevada, while living in San Francisco, and shortly after our oldest was born, we moved to Seattle, Washington. Although the move to Seattle meant leaving family and starting a new adventure, we felt God’s presence and have continued to feel His presence throughout our family’s journey.

When I was pregnant with Jack, I remember thinking there was something different. When Jack was born, he was unable to pass the infant hearing test while in the hospital. He also had feeding and nervous system issues. We knew that early intervention was very important for Jack, so by the time he was 4 months old, he was undergoing PT, OT, and speech therapy. He also had strabismus and underwent two surgeries to correct his vision. We were hopeful that these interventions would correct his balance and motor issues, but he was still unable to hit some of his milestones.

After a few years of genetic testing and no findings, we were introduced to a new genetic test that ultimately provided us with the answers we had been searching for. Upon receiving the test results, we learned that Jack had a change on the FOXP1 gene. The way it was described to us was that this change is equivalent to having a single misspelled word in a whole set of encyclopedias. We were also told that, at that time, Jack was the only kid on record with this genetic abnormality. We were shocked! Although there was not a lot known about the FOXP1 gene, we were told that the only physician in the world studying it was located near us, at Seattle Children’s Hospital!! Talk about God’s provision for our family.

We were so encouraged and relieved to finally have some answers! We are both athletes, so when we received Jack’s diagnosis, we kept saying he was going to “Varsity FOXP1.”  Soon after, we became involved with The University of Washington’s Haring Center for Inclusive Education and early childhood intervention for children with and without disabilities— ultimately, a community of like-minded families and teachers we have grown to love. This is the community that led us to Jill’s House.

Jill’s House has allowed us to further explore the extension of a community we were already a part of, while offering safe independence for Jack through overnight camp experiences. We were pleased to know that Jack would probably attend camp with friends that he had already made through our involvement with Haring Center, but also be able to make new friends. Additionally, the religious core and mission of Jill’s House were also very important to us.

Jack has been consistently going to camp for 3 years. He loves hanging out with Jill’s House staff for the weekend, and he talks about being able to stay in his own room! At the end of a weekend at camp, he comes home tired, which means he’s also engaging in all the activities!

There are so many dimensions to camp! From archery and horseback riding to paintball and all kinds of games, there are so many great activities for the kids that are, quite frankly, hard to replicate at home. Camp provides Jack with a ton of experiences that help build his confidence and his skills—even an opportunity to show off his blow-up dinosaur costume in the camp talent show!

The first time Jack went to camp, we didn’t know what to expect or how to prepare for our weekend without him. Over time, we have realized how valuable and important respite really is, to spend time with our other children and with each other. We all look forward to those weekends now!

There have been so many God-moments throughout our journey. Jill’s House Weekend Adventure Camp is an important part of our journey and a place where Jack truly belongs.

The Roland Family

/in , /by

Told by Samantha Roland

Oftentimes, you hear something, and you can’t help but think, “Wow, that’s terrible. I didn’t expect that!” Our family has faced less-than-desirable diagnoses, depression, and fear. We have said, “Wow, we didn’t expect that!” but God used those moments; He has shown us that you can still be blessed. Our story is better and stronger, and we can’t help but say, “God is so good!”

When we were pregnant with Zoe, we opted to forego prenatal testing. We didn’t believe testing was necessary, as any result we might have received would not have changed the love we had for our unborn child. In hindsight, it might have been helpful from a preparation standpoint. We are older parents, but figured we were heading on a standard journey with a typically abled child.

When Zoe was born, we discovered she had Down syndrome, and our world became very confusing. We hadn’t received any resources and didn’t know how to care for a special-needs child. I remember a social worker speaking with us in the hospital, but even that meeting was discouraging. What we were facing was not at all what we had expected.

Zoe’s first year was full of medical appointments, and she had many seizures. She couldn’t even smile! We were in an unknown space, and I was unable to continue working at my job, as caring for my family was a lot of work.

Zoe is now 11, and though our journey was hard, we truly feel like we hit the jackpot with our sweet and tender girl. She is the most delightful person, and we are so grateful God chose her for our family story.

When Zoe was around 1 year old, God began to perform miracles in our family, as He began to heal us and knit us together! God healed Zoe of her seizures when she was a little over a year old, and my husband and I were strengthened as parents of a special needs child. Besides these miracles, the Lord brought Jill’s House to us!

I found out about Jill’s House from a mom at the playground. I was apprehensive, but excited to learn that Jill’s House is a Christian organization. Zoe has now gone to Jill’s House 3 times! She loves camp so much. Jill’s House is the most wonderful experience for her!

Zoe’s weekends at Jill’s House help her to feel like a grown-up girl. She gets to try on an independent life and enjoys doing things that other kids get to enjoy! She would probably say her favorite part about camp is sleeping in a sleeping bag, hanging out with friends, packing all her favorite belongings for the weekend, and spending a weekend away.

Families like ours don’t have much margin for anything outside our daily load. But we are also used to carrying it all. So, realizing that we aren’t carrying the load by ourselves, that we have a team of supporters and encouragers in Jill’s House, means so much. It’s just another way God has shown His faithfulness to us.

We have learned so much through Zoe! Walking through life with her and our community of friends has opened our eyes to the very special needs we all have. The team at Jill’s House has shown us that the most healing message anyone can hear is that even in your unloveliness, you are still loved! The team really covers everything they do for every child, with love and understanding. Having a team of people who love us, though we are different, is so healing to our hearts.