The Vargas-Portocarrero Family Story

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Told by Rita Vargas (Mom)

The Jill’s House adult program is a dream come true. Ricardo is welcomed, engaged one-on-on, and growing in independence.

I’m Rita, mom to Ricardo. He’s 37, endlessly social, and lights up whenever there’s a chance to talk, play a game, or ride a bike. Ricardo was born in Bolivia and diagnosed with Kabuki syndrome. Over the years he’s had many surgeries—cleft palate repair at birth, spinal surgery at five months old, eye procedures—and therapy after therapy. We moved to the U.S. when he was just two months old, and Fairfax County Public Schools supported him from the time he was a toddler.

Life gets so much harder when kids get out of the school system. As a young adult, for a while Ricardo was in a day program that was not good for him. He had to sit around stuffing envelopes and my heart just broke.

Things got better when we got into the Adults with Disabilities Day Program (ADDP) at McLean Bible Church. Ricardo has a girlfriend who he met there years ago. Although she moved to Florida two years ago, he visits her during his summer and winter breaks. They talk on the phone every night.

We learned about Jill’s House because Ricardo met Jill Solomon at ADDP, just a stone’s throw from Jill’s House! But Ricardo was already too old to participate in Jill’s House programs, which were serving kids up to age 21. When I heard last year that Jill’s House was starting an adult program, I couldn’t believe it. A few of us ADDP parents went to the open house, and the moment I walked in, I knew it was for Ricardo. I signed him up right away.

Now, Tuesday nights at Jill’s House are Ricardo’s favorite. He loves the individual attention, the chance to talk and play, and the warm welcome he receives at the curb. Staff run up to greet him by name, and he beams. Before I can even park the car, he’s calling out, “Bye, Mom!” and heading inside with a big smile. The Jill’s House adult program is a dream come true. Ricardo is welcomed, engaged one-on-on, and growing in independence.

Ricardo’s absolute favorite activity is riding bikes. At home, he would ride for hours in our cul-de-sac, but his bike is broken right now.  Jill’s House has the same bikes as his at home. He happily hops on their bikes and rides with joy for as long as he can. He also loves to play “game show host,” asking staff to be contestants while he quizzes them. Chloe, one of his favorite staff members, has become a real friend to him. She accompanied him at the “Night to Shine” gala, making the evening extra special.

When Jill’s House started offering adult camp sessions of Weekend Adventures, we were there for the debut! Ricardo had such a fun time at Blue Ridge in Middleburg. He found it thrilling to go horseback riding!

As a single mom, when Ricardo is at Jill’s House, I can meet a friend for dinner without worrying about being home by 8 p.m. to relieve a caregiver. I can breathe, laugh, and come back refreshed. That kind of respite keeps me going.

Jill’s House helps Ricardo grow in independence. For each visit, together we make a checklist for his overnight bag—toothbrush, clothes, all the basics—and he now packs for himself. I double-check, of course, but he’s learning to take responsibility.

Community has been another gift. Through Jill’s House moms’ dinners and Zoom meetups, I’ve connected with other parents who understand this journey. At a recent dinner, I met another mom and we started dreaming together about future housing options for our adult children.

To the staff at Jill’s House, I want to say: thank you for answering God’s call. You could be doing a thousand other things, but instead you pour out love, patience, and joy for our children. When I drop Ricardo off, I feel complete peace. That is no small gift.

 

 

 

 

 

The Hart Family

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Told by Cindy Hart (Mom)

We were so thrilled when we heard about Jill’s House. Suddenly we had this community of people who understood our boys and connected with us as a family. The staff understood their needs. Nothing about our boys was new or different to them.

When Peter was born, he was a joyful surprise to our already large family. As we welcomed our seventh biological child, he also entered us into the new world of raising a child with Down syndrome. Peter also inspired us on an unexpected path into the world of special needs adoption. That’s how we welcomed his younger brother Stephen into our family.

As we started the adoption process, our goal was to have another boy a little younger than Peter and also with Down syndrome. When our adoption agency showed us a picture of Stephen, 18 months younger than Peter, we immediately felt a connection to this little boy in China.

We brought Stephen home at the age of three and a half years. As we adjusted to our new family dynamics, I began to suspect that Stephen might also have autism. It wasn’t just the language barrier. It became clear that Stephen processed the world differently. He started using a communication device, and we navigated our way through various therapies.

Even though we had all these kids and had been in the same neighborhood for a long time, we found ourselves in a whole new world. We had the support of our church and older children, but we weren’t connected to the special needs community. We were so thrilled when we heard about Jill’s House. Suddenly we had this community of people who understood our boys and connected with us as a family. The staff understood their needs. Nothing about our boys was new or different to them.

We first sent Peter, and Stephen joined soon after. Early on, they stayed in the same room together, but Stephen kept Peter up at night. So, the staff thoughtfully gave them separate rooms. That’s one of the things I love the most about Jill’s House—they understand the kids so well and know what will work the best for them.

Peter and Stephen haven’t attended the same school since preschool, due to their different needs. Their time at Jill’s House Blue Ridge camp has been a rare opportunity to share experiences. One of my favorite moments was when Stephen saw Peter do the high swing and decided to try it himself. If his big brother does something, Stephen wants to do it too! That was a thrill for all of us.

Stephen gets so excited about his upcoming Jill’s House visits. About a month away, he will start talking about it on his device. While Peter and Stephen are busy having the time of their lives, my husband and I spend our weekends reconnecting as a couple, catching up with friends, or visiting our older kids. One weekend, we even used the time to drive down to Charlottesville for an event our daughter was involved in, stayed overnight, and still had the time to do things at home before pick-up.

My husband and I loved the marriage retreat. It was remarkably wonderful to meet other couples who truly understood our journey. Being around other couples that really prioritized their marriage—and also have this unique experience of raising children with special needs—was really, really wonderful. My husband is now a regular at the Dad’s Saturday morning brunches, and I’ve joined the Thursday evening gatherings. As we connect with the community of Jill’s House parents, we gain tools and friendships. I only wish we had gotten involved sooner.

We are grateful for so many things about Jill’s House. But thank you for seeing the beauty of our children. That is what is most touching.

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 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 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 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.