The Adams-Nagel Family

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As told by Jan Adams

“Never will I leave you; never will I forsake you.” Hebrews 13:5

Nico was born in Guatemala and entered our family through adoption when he was 6 months old. We were excited to welcome a baby into the world, but when we couldn’t conceive a child naturally or through multiple fertility treatments, we knew that adoption would be how our family would grow. Our process of adoption from Guatemala was so uncommon and totally orchestrated by God. Our names were added to a list, and we were emailed pictures and details of children seeking a forever home. For several months we received emails from the listserv, then in March 2007, we received an email with a picture of the sweetest little one-month-old baby boy. We knew instantaneously that we wanted to meet him and bring him home! We arranged to visit Guatemala and meet him in July 2007, and he came home with us on a Medical Emergency VISA in August 2007.

Nico was very ill. He was medically fragile and needed urgent care which we located in the DC area before we brought him home. He was born with severe pulmonic stenosis and had his first surgery within days of being home. He was diagnosed with failure to thrive and had plagiocephaly which required 4 rounds of Doc Band treatments. He received OT to help with the formation and use of his mouth as well as PT due to his hypotonia.  He is on the Autism spectrum.  He has hearing loss and wears bilateral hearing aids, and significant vision loss so he wears corrective lenses. Nico has Noonan Syndrome and femoral anteversion as well.

I had to leave my career in telecommunications in 2007 because I was taking Nico to 7-9 appointments a week. I fought, and still fight for Nico to receive the best care, services, and opportunities to thrive.

Before we adopted Nico, we used to volunteer with Access Ministries (a ministry for children with special needs) at McLean Bible Church. In fact, as a volunteer at MBC, I cared for Lon and Brenda Solomon’s daughter, Jill, whom Jill’s House is named after!  We remember the years of preliminary work that were so instrumental in building Jill’s House. God was working in and through our lives in preparation for Nico, long before he was even born!

When Nico turned 6 years old, we were excited to register him at Jill’s House. With no family to help in the area and having a special needs child that made staying with a typical sitter or overnight with a friend, a non-option, Jill’s House was THE OPTION.

We met and trusted the staff so much, and I knew they would love and care for him as I did. Jill’s House was going to provide Nico with his very own experiences and opportunities. Eleven years later, we have wonderful caregivers who have been a part of Nico’s life and will never be forgotten.

Between scheduling doctors’ appointments, communications with Nico’s education team (teachers, therapists, specialists), maintaining the care schedule at home, and managing my full-time work, it is hard to relax. I am also a single mom, so there’s hardly ever a moment I am fully relaxed. But the school nights when Nico is at Jill’s House are a huge blessing! It is nice to have a break during the week when I don’t have to think about meals or the schedule, I can unwind, or work a few extra hours if I need to. Those nights are such a gift. But truly, the gift is for Nico. Where else would a kid have the opportunity to swim in an indoor pool before dinner on a school night?!

Nico thrives with a schedule and when he knows what to expect. When the Jill’s House bus arrives at school, he is excited to climb on and greet his friends, and he anticipates all the fun he’ll have when they arrive at Jill’s House. At Jill’s House, Nico gets to build relationships with kids and have fun with the staff and volunteers. Jill’s House staff and volunteers treat him like a typical child. They treat him with honor and respect, and the special child he is!

Our life is very complicated! So overnight respite is truly what I need. Jill’s House helps me to relax. There are very few places where Nico feels comfortable, safe, and loved unconditionally. Jill’s House is one that truly gives me the freedom to pause, breathe, and relax.

The Damm Family

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As told by Nadia and Joe Damm

 

Jill’s House is a gift from God. We can’t believe we get to enjoy it multiple weekends a year! We are so grateful that this is something our family can benefit from for years to come. Thank you, Jill’s House!

Before we had our children, we befriended a woman who has since become Alyssa’s volunteer Buddy at Windy City camp. This dear woman would share her experiences as a camp volunteer, and it always amazed us that people like her were willing to give up their weekends in that way! It was by God’s grace that this sweet woman entered our lives almost 16 years ago.

We have had a variety of experiences raising a daughter with Down syndrome. From doctors who didn’t see the value of life and encouraged us to terminate the pregnancy to inconsistent and challenging respite services, at times, it seemed as if the world did not want Alyssa here. At least, that’s how we felt. But we have also encountered many people who genuinely love our daughter, and Jill’s House offers that to our family!

Alyssa’s siblings have enjoyed going to camp for years, and Alyssa began asking for the same experience. We kept hearing about Jill’s House from our friend who volunteers there, and since Alyssa, at nine years old, seemed to be at the right age, we decided she was ready to go.

Though the intake process took a while, it was extremely comforting and helped in building our trust. Indeed, an immense amount of trust was required to place our child in someone else’s care. All the questions we were asked made us feel like they understood our daughter, and nothing excluded her from participating in camp. Through the whole process, I gained a new perspective on our lives and what we work through day to day with Alyssa. Although we felt reluctant about entrusting her to someone else, aware of what goes into caring for our child, every detail about Alyssa was taken into thoughtful consideration by Jill’s House, and they were excited to have her at camp.

Alyssa is adventurous and outgoing. During our Meet and Greet before her camp weekend, she toured the grounds, saw where she would sleep, explored the activity spaces, and enjoyed the outdoor activities. She was excited for camp and raring to go!

When her first Jill’s House weekend arrived, the whole family dropped Alyssa off at camp. Her brother and sister really wanted to see where Alyssa would be staying. We also decided to stay near the camp that weekend. We relaxed, lingered, and just talked. We gave one another time to share. We couldn’t believe how much we all relaxed and bonded. The weekend was amazing! Our older kids kept saying how much they needed it!

Alyssa had a fantastic time at camp, too. While she is outgoing, she still feels her way through every situation. We were so happy to learn that she enjoyed playing with her Buddy and our good friend the whole weekend! She picked up on cues that everyone there was happy to have her, and she felt safe. She was given choices, and she thrived!

At the end of the weekend, we were all so excited to be together again! Alyssa came home wanting to say grace at mealtime and share the devotionals and prayers they said at camp. We all felt refreshed and renewed; it was just the right amount to reset.

The Levine Family

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As told by Pam and Jesse Levine

 

To have Jill’s House available when before you had nothing, and then to have people who are so empathetic and gentle with your child. . . you can’t ask for anything more!

We always knew that we would adopt a child. Even when we were young and dating, we talked about adoption. We brought our first daughter home from China and quickly pursued adopting another girl so that the girls would each have a sister. Then after a couple of years, we adopted Jax!

We adopted Jax when he was three years old. We knew it would take some time for him to become acclimated to our family and to America. He had been in a Chinese orphanage for the first three years of his life. We noticed some developmental delays, but over time, we realized that there was more going on than just difficulty in adjusting to life with us. Originally, he was diagnosed with ADHD. Then after displaying further signs of delay, he received an intellectual disability diagnosis when he was about five years old.

As a family, we say, “Everything is figure-out-able.” We have moved a lot; we have faced frequent health concerns. We have received unexpected diagnoses, but we have always been able to figure it all out. We knew that no matter what we were facing with Jax, that we would be able to figure it out together!

Over the years we have had attendants to help with Jax after school, or for a few hours on a weekend, but we never had a full weekend of help or respite. As Jax grew older and we experienced new challenges, we also began to grow weary of finding relationships and activities for him to gain independence and help develop his social skills. One day, my husband did a Google search and discovered Jill’s House! We’ve never lived near family, and we always felt nervous about leaving the kids with anyone. But Jax would hear other kids talk about overnight sleepovers at a friend’s house, and he would ask if he could have those same experiences.

We decided to complete the paperwork for Jill’s House. Before Jax had his first overnight there, we were invited to the Jill’s House Family Christmas Party. We were able to see other families, and I was able to meet other Jill’s House moms. I enjoyed chatting with them and felt comfortable asking my burning question, which was, “Is it really safe there?” I wasn’t sure if Jax could verbalize if things weren’t right, and I was nervous. The moms understood my concerns without judgement and plainly said, “We’ve been here for 12 years, and it’s the safest place for our kids!” These moms explained that there are so many eyes on the kids while they are at Jill’s House, between the nurses and the program staff, and that it is just as safe as my own home!

Jax finally had his first weekend at Jill’s House in January. We were so nervous! We let him take his phone so he could text us at any time. The first night, he sent us a text saying, “Good night. I love Jill’s House!” We were so excited. The next day, he ignored us! We sent him a text in the morning, and again in the afternoon, but we never heard back from him. We decided to call later that afternoon just to see if he was okay and ask if his phone had been taken away. The supervisor shared that Jax was having a great time. He was busy, engaged in fun activities and was doing great! We were relieved, and we were finally able to fully relax! Now, when we drop him off, he barely says goodbye before jumping out of the car.

We attended the Family Retreat and had such a great time! Seeing the other Jill’s House families and knowing that, even though our families are all different, we all face some of the same things, was awesome! We were able to connect with other parents and get to know the staff even better. Jax also had such a great time with the staff. He really loves them!

Jax is going to high school next year and is very excited. He is part of a teen boy’s group with Boys and Girls Club of America, but he says his favorite activity is going to Jill’s House, where he feels so loved and welcomed! To have Jill’s House available when before you had nothing, and then to have people who are so empathetic and gentle with your child. . . you can’t ask for anything more.

 

The Farrell Family

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Told by Sean and Jenee Farrell

For Sam, Jill’s House Rocky Top Camp in Nashville is the happiest place on the planet! It’s his most favorite place to be.

Sam has been attending Jill’s House Weekend Adventures Camp since he was 12 years old. We started exploring different day camps and programs for Sam long before we sent him to Jill’s House. We wanted him to experience the youth church programs that meant a lot to us during our own childhood. However, we went through some frustrating experiences when Sam was turned away from other programs that couldn’t accommodate him. It was heartbreaking!

When we first heard about Jill’s House, we had obvious concerns. But when we met with the Local Program Manager, we were very impressed by the depth of her questions and her interest in Sam and his motivations. We were relieved to hear that Sam would be welcomed, cared for, and kept happy.

Sam is very social and loves to be active. He has a huge heart and a great sense of humor. He loves water slides, roller coasters, music, and dancing. He enjoys helping in the kitchen and likes knowing that he’s done something well. Although we were sure that camp would be a great experience for him, we were still cautiously optimistic.

When the first weekend arrived, we anxiously waited for the phone call asking us to pick him up—the call to tell us that they could no longer accommodate Sam. This is what we had been used to. But the call never came! Then, when we picked Sam up at the end of the weekend, he was radiating happiness. Pictures of him from that weekend—and those of many others he’s attended since then—show him with the biggest smile and a constant look of pure joy. We finally found what we had been looking for!

Sam excels in an environment that is set up specifically for him. Inclusivity is good too, for many reasons. But Sam thrives better in an environment that is designed just for him, and Jill’s House offers that experience. Everything that Jill’s House offers has been designed with him and other kids like him in mind.

Once we realized that Sam was going to be comfortable and accepted at Jill’s House, we felt immense gratitude, as if we had all been given the most tremendous gift.

Having a child with special needs can be difficult. We know Sam’s younger brother also feels that. But we also see how our family has grown in being compassionate and understanding of one another, and other families too. While Sam is at Jill’s House, we have been able to use the opportunity to connect in our marriage and take our younger son to activities that don’t interest Sam.

Sam is now 17 years old and will graduate from high school this spring. During the fall, he will move into vocational training, where he will continue to develop skills for employment. He enjoys helping in the school cafeteria and also works in the school store. Sam has a big heart and even bigger enthusiasm. He’s a popular guy wherever he goes!

When Sam comes home from camp, he will go through the whole list of foods he ate and the activities he did. And he would always ask to return! We have so many emotions as we consider this next chapter in Sam’s life. We are excited, yet we also feel sad that his time at Jill’s House is coming to an end. We will always be grateful for Jill’s House and the incredibly passionate staff at Jill’s House and Camp Rocky Top!

 

The Hansen Family

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Told by Grant and Julie Hansen

Olivia is 11 years old! She loves to be with people and socialize. She participates in her cheer team, plays all kinds of sports, and is a member of our local Girl Scouts and Cub Scouts troops. She also loves going out to eat and cooking food at home. She would say her least favorite thing is feeling bored, so we try to fill her days with activities she enjoys!

Olivia also loves being around people. Before she could even talk, she would manage to put herself in the middle of other kids while playing. As social as she is now, you wouldn’t be able to guess that she didn’t begin talking until after her 5th birthday!

We heard about Jill’s House from a Facebook group for parents who have children with autism. A parent mentioned that she had sent her son to Jill’s House, and he had a great time there. We had looked into other overnight opportunities for Olivia, but they either were week-long camps that we knew wouldn’t be a good fit for her or just didn’t feel right to us. However, Jill’s House and the local Garden State weekend camp were exactly what we were looking for!

Eventually, we were able to visit the camp and knew right away that it would be the perfect experience for Olivia. We wanted her to feel confident that she could be without us and still be okay. The Garden State Local Program Manager made us feel so comfortable! We were even told that if Olivia needed to talk to us at any time during her first stay, the staff would allow her to call home. But her first stay at Garden State camp was a perfect experience for her, and we didn’t hear from her at all!

Finding support is challenging. Olivia’s weekend away at camp was the first time we were alone in 11 years. We were so excited to have this time together that we probably stacked our weekend with too many fun things, but it was very special for us. The best part of our weekend by far was knowing that Olivia was safe and having a great time.

When we picked Olivia up at the end of the weekend, she got in the car and kept asking us when she could go back. Although she doesn’t share a lot of details about her time at camp, we learned that her favorite activity was the zip line, which she was able to ride twice. She also enjoyed playing in the pool and loved having a sleepover with her friend in the cabin.

We are truly grateful for Jill’s House. We think it’s amazing that Olivia has had this opportunity and that Jill’s House allows her to thrive in a safe environment among other kids. Now that her needs for social interaction with her friends are being met, it is helping her grow socially and our comfort level has grown too, because we know that Olivia will be ok.

We love Jill’s House so much!

The Sullivan Family

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Told by Sarah Sullivan

When our first child was born, we were living in California. Shortly after she was born, I stopped working, and we decided to move into my parent’s home in Illinois. We had planned to stay with them for a short time, so we could save some money. But then Kate was born, and our plans changed.

When I was pregnant with Kate, we decided not to do any prenatal testing but we had ultrasounds throughout the pregnancy. I remember during one ultrasound the lab technician took extra time looking at the space where her heart was, but we were not told about any problems. Kate was born with two holes in her heart and she was also diagnosed with Down syndrome. She had to undergo open-heart surgery when she was just three months old; then a pacemaker had to be put in, as some complications occurred because of the surgery. She was in the hospital for two weeks! Gratefully, we were with my parents during that time as they helped with taking care of our older daughter. God knew what we needed when He moved us to Illinois!

I had studied early child development before our first child was born and worked with kids with special needs—even those with Down syndrome, but we didn’t know what Kate’s diagnosis would mean for her or our family. Looking back, I believe God was preparing me for Kate, and I think God knew that I needed to see her and hold her in my arms before we received the diagnosis.

Those first few years of her life were filled with so many visits to doctors. At one point, she had eight different doctors! She is quite healthy now and doing very well.

In Illinois, Kate was involved in a program for children with Down syndrome, where she received most of her early support. The program was so wonderful and it offered profound encouragement to her and our family! I remember thinking about how much we were going to miss the program when we moved to Virginia after a few years. But then when we moved to Virginia, we found Jill’s House!

When I first learned about Jill’s House, I visited their website and read Brenda’s testimony there. I remember being so touched by her words! In her testimony, Brenda shared about their busy life with their older boys, and when Jill was born and later developed very special needs, she felt she couldn’t leave Jill’s side. They were all in desperate need of rest, but Brenda prayed that God would use Jill’s life for a greater purpose. When I read her words, all I could think was that when Jill was born, God was also thinking about Kate, our family, and all the other families that are being served by Jill’s House today. God is sovereign over all, and I’m so thankful to Lon and Brenda for their faithfulness in trusting The Lord with Jill’s life.

God IS good, and He has a plan! Life can be hard, and we don’t always understand what is happening, but when you step back and trust that He is faithful, you can see that He is working. Brenda’s words really touched my heart and helped me to trust that God is working in our lives too.

Kate started going to Jill’s House when she turned six years old and has been going there for the last 10 years. When she was younger, Kate was quite active. So, we found it hard to do our daily chores or even take her to the park. We would often avoid engaging in certain outings as a family because it was such a challenge. Kate is 16 years old now and full of life! She has a wonderful sense of humor, and she loves her family. She enjoys going out to eat, playing basketball, and putting on dance shows (for us) at home and Jill’s House.

Kids with special needs might be overwhelming or intimidating to some people. But everyone at Jill’s House sees these kids for who they are. God doesn’t make mistakes, and He has a plan for every single person on this planet. Everyone at Jill’s House seems to know that; they embrace that, and they love and serve our kids and families so beautifully! Also, from a practical standpoint, we can truly rest knowing that while Kate is in Jill’s House, there are on-duty nurses and excellent staff to tend to her medical needs and any situation that may arise. Everything about Jill’s House is such a blessing to our family!

The Roland Family

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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.

The Kalata Family

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Told by William & Maribel Kalata

We are a close-knit family! We watch movies together, we all talk about our favorite shows, and we spend a lot of time together at home. We are protective of our children, and our kids look after each other. Our kids are especially protective of their little brother, Ian!

Ian is 16 years old and full of life! Like other teenage boys, he enjoys his electronics and drawing, but because of Jill’s House camp, he has recently taken an interest in horses.

We have 2 cats at home, which makes him jumpy, and when he sees a dog outside, he will shriek back, but when he’s at camp, he becomes a different boy.

He not only enjoys the animals, but he also pets them. He has even gone riding on horseback! Jill’s House does that for him! Jill’s House helps him feel comfortable with new experiences and has helped him to be an adventurous boy.

Ian has been going to Jill’s House since he was 6 years old. The first weekend he stayed at Jill’s house was a nerve-wracking weekend for us! Leaving him for that first weekend was so hard. As parents, we felt guilty because Ian was never away from us. We were concerned that he would be okay, or that he wouldn’t understand what was happening. We worried about him eloping. We were very scared. But he had the most amazing time!

The second time he went to Jill’s House, he didn’t even look back at us as he walked through the doors!

Ian has been going to Jill’s House for 10 years. We know it’s less about how we feel when he is away and more about how much fun he has there and how comfortable he is. He loves Jill’s House so much, and we have grown to appreciate what Jill’s House does for him.

We think that Ian considers Jill’s House as an extended family. When we are talking about Jill’s House, whether it is going to the “big house” in Tysons or attending a camp weekend, his face lights up, and we know that he feels connected.

One of the nurses had the experience of being at both Jill’s House and at the camp, and she commented that when Ian is at Tysons, he is there to chill and hang out with friends.

But when he goes to camp, he is an adventurous boy! He is leading the charge and doing everything available at the camp. That is what Jill’s House has done for him. He has found relationships and connections, and he has gained confidence!

In terms of spiritual work—making sure the kids feel cared for, being kind and compassionate, and sharing God’s love—we think he understands all of that!

He’s not super verbal, but we will often hear him singing “Jesus loves me this I know”. We talk about Jesus and pray together, but we don’t attend church.

Jill’s House has helped Ian to feel the love of Jesus. I think he has made the connection between Jill’s House and Jesus, and he feels loved.

Jill’s House weekends are placed on Ian’s calendar, and we all do a countdown to these dates. Although Jill’s House is his special place, and the experiences are unique for him, we all feel like we have won the lottery. He looks forward to his visits so much that we can’t help but feel grateful in our hearts. We tell everyone about Jill’s House because of how much Ian loves it and what it has done for him.

The Anderson-Page Family

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Told by Pam Anderson

Born on the 25th of December 2007, Steven was a Christmas baby. He was placed with us when he was merely 6 months old. He was such a tiny baby—weighing only 6 lbs. when he arrived. Back then, I never could have imagined how radically he would change my life. He may not be my biological child, but I think of him as a precious gift.

At 9 months old, Steven was diagnosed with cerebral palsy, and we were able to get him into early intervention services. He went on to see different therapists and doctors. Over these last 2 years, he has had to undergo several surgeries. He has had bilateral hip surgery on both hips, developed contractures, has had to have surgery on one leg, and is about to have his other leg operated on this summer. He can no longer use a walker and is now primarily bound to a wheelchair. It has been hard, but he is a beautiful child and is taking on these challenges as well as he can.

Steven is very verbal. He speaks in phrases and can put words together to form sentences to tell you exactly what he wants and what he doesn’t. He is also very polite and charming, but he can be a pistol with me. I guess that’s what makes him a typical teenage boy.

I learned about Jill’s House many years ago through a friend on Steven’s T-ball team. I don’t know why it took me so long to inquire about it, but I’m so glad I finally did. I guess it’s because we as parents and guardians are so hesitant to send our special needs child into the care of someone else. We worry about our children and whether they will be all right or not. However, after observing Steven’s first weekend at the Rocky Top Weekend Adventures Camp, I wish I had enrolled him earlier!

Steven has now participated in the camp twice. As he was getting ready to go this last time, I heard him repeat to himself, “Make new friends.” As we arrived at the camp’s entrance, he rolled his window down and called out to his friends. It’s obvious that he loves the camp very much. When I picked him up at the end of the weekend, he went on and on about ziplining, water activities, and horseback riding. Yes, Steven went horseback riding! Who could have thought?

 

What I love the most about Jill’s House is that Steven can participate in various activities, and he is not made to feel limited in his ability. So many people are available to help each child experience all the activities, so if it was going to take 4 people to help Steven enjoy horseback riding, then that’s what they were going to do! One camp counselor told me, “Although Steven might forget about me, I will never forget about him.” In all honesty, I doubt Steven will ever forget how special the camp made him feel.

I suppose Steven would say that his favorite thing about camp is being able to see his friends. After all, being a special needs child can be very isolating; you can’t just run down the street and play with your friends. However, while at the camp, Steven gets to spend the entire weekend with his friends.

Since Steven is not my biological child, some people like to tell me just how good I am to be caring for him. What they don’t know is that he is the one who has been a blessing to me. He is a very special young man. I’m sure he would love to get up and run, but, unfortunately, that is never going to happen. I see him as a child sent by God, and I am committed to doing everything I possibly can for his sake.

Today, society has become more inclusive of kids and even adults with special needs by offering spaces for them to engage in a variety of activities; however, there is still a long way to go. Jill’s House does a beautiful job of helping these kids. I am so grateful for Jill’s House!

Thank you for making stories like Steven’s possible.

The Perez Family

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Told by Coleen R. San Nicolas-Perez

The day Joaquin was born was one of the happiest days of my life. Holding my child for the first time filled me with indescribable joy. I gave birth to a darling, sweet, and perfect baby boy, and life at that moment was … well, it was blissfully perfect.

All the nesting I did beforehand, all the motherhood books I read, and all the stories I heard from moms of typical children did not prepare me to be the mother of my special son. Nothing really prepares you for that moment when a doctor sits you down and says the word “autism”.

Joaquin was almost 3 years old when he was diagnosed with autism. Before that, he was thriving, even excelling in some areas. He would easily match picture cards before the age of 2, and boy! he did babble nonstop while doing his best to articulate words. He could recite the alphabet and count to 100. More importantly, my dear son had a special sparkle in his eyes.

That began to change after his second birthday. He wouldn’t respond to his name, constantly walked around in small circles, and stopped making eye contact. What was heartbreaking was that he became very quiet—barely a whisper.

That sparkle in his eyes quickly disappeared. He was a shell of his former self, lost in a world I couldn’t penetrate as much as I wanted to.

It took many years of therapy, tests, school meetings, advocacy, prayers, and a lot of hard work on his part to get to where he is today.

He is considered non-verbal, although he does verbalize a handful of words. The popular word he says these days is “cheeseburger”, which is one of his favorite foods. He can write his name and trace other words. He knows how to make the sounds of many animals. I find it adorable, even today, when he says “moooo”. He can point at objects and usually says “that one”. He doesn’t read or write, but we know he is super smart.

Joaquin turns 17 soon. My little baby boy is no longer little and far from being a baby, but in many ways, he still is.

Several years ago, Joaquin was also diagnosed with intellectual disability. His IQ cannot be determined because he is unable to be evaluated using a standardized test. Even with modified tests, the data shows he is way below average in comparison to those of his age and those much younger than him.

Every year, we go through the data with his schoolteachers, and every year, I am left with an ache and void in my heart and soul. It is difficult to put into words how exactly it feels when educational professionals, across the table, basically tell me every year that my darling, sweet, perfect child is far behind where he needs to be. No parent wants to hear this, but many do.

My family’s story is not unique. As I write these words, I know there are thousands of moms and dads out there who are trying to do their best for their children with special needs. I also know that somewhere nearby, a mom is learning for the first time that her child is autistic. According to the CDC, 1 out of 36 kids are diagnosed with autism. That’s not a typo. 1 out of 36.

Data after data. Tests after tests. Results after results. This is a tough life. It is physically, mentally, and emotionally exhausting. This life has pushed me to the edge and will continue to do so. What keeps me and my husband going is and will always be Joaquin—our perfect child.

He is the sweetest young man you will ever meet. A gentle giant, many have said. When this boy loves, he does so with his whole heart and being. He is kind and respectful, and oh boy! Is he resilient? … more resilient than his independent, career-oriented mommy, that’s for sure.

He enjoys going to school and being with his classmates and teachers. He is all smiles and hugs when I pick him up after school, probably because we often grab a yummy treat on the way home.

Joaquin can also be impatient, vocal, and demanding, which he gets from me. As for his sunny disposition and good looks, he gets that from his daddy who happens to be my childhood friend and husband for 25 years.

As hard as this life may be, I would not want to be on any other journey. I am absolutely in love with my autism family.

Not only are we an autism family, but we are also a Jill’s House family. We joined Jill’s House a few years ago. In the beginning, I was very reluctant and nervous for my non-verbal son to spend a couple of nights under the supervision of strangers.

The first time he went to Jill’s House Blue Ridge camp, I was convinced the staff and volunteers would call me in the middle of the night to pick him up. There was no way he would want to stay. Plus, there was no way the Jill’s House staff would take care of him the way he needed to be cared for.

I was wrong. I was completely and utterly wrong.

That first weekend, the Jill’s House team never called. They did, however, texted me a few photos of Joaquin to reassure me that he was doing fine. He was more than fine. The pictures showed him smiling, laughing, and having as much fun at camp as he should, as any teenager should.

Fast forward to today, Joaquin now walks into camp as if he owns the place. If I could read his mind, I am pretty sure he says, “Hey, sup fam!” to every Jill’s House staff member and volunteer as he settles in for a fun, safe, and positive weekend.

Jill’s House is a place of “rest, renewal, and relationships for kids with intellectual disabilities and their families.” For me and my family, Jill’s House is also about saving lives, because that’s what they do. The founders, staff, board members, fellows, volunteers, sponsors, and contributors of Jill’s House save lives … and they bring life back into families.

Note: Coleen R. San Nicolas-Perez is employed with the Department of the Navy. The opinions stated in this editorial do not reflect that of nor is an endorsement by the U.S. Navy.

Thank you for making stories like Joaquin’s possible.