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.

The Ver Hage Family

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Told by Kristy and Rich Ver Hage

Shane was born in 2010 and before his first 2nd birthday, he was diagnosed with Autism. Shane is now 12 years old, and such a great kid!

Recently, Jill’s House Weekend Adventure Camp came to our area, and it has made us and Shane so happy.

When the COVID-19 pandemic hit in 2020, his world stopped, just like everyone else’s. Around the time things started opening back up, he fell sick with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). In 2021, he didn’t feel well, developed brain inflammation, and started having seizures; his behavior had changed completely. Almost overnight, he went from being an active kid to not being able to walk for even five minutes without pain. It was such a shock to witness how aggressive PANS was, and how quickly it had taken control over his body.

We worked with our doctors for a long time to diagnose his condition and identify the right treatment for him. He feels much better now, and we are working really hard to help him regain his strength and energy. Due to PANS, he developed anxiety, so the Weekend Adventure Camp was very important for him! We were nervous about taking him to camp, but when we saw that volunteers who were part of our church were also going to be there with him, it put us at ease.

As much as we needed the weekend, he needed camp even more. We were so happy to learn that he climbed the rock wall! The encouragement and cheers he received motivated him, and he made it all the way to the top. He was so proud of himself for that accomplishment.

Shane attends a wonderful school, and he participates in a special needs Sunday School class at church. His world is pretty small. We know that he wants independence, but it’s hard. When he was at camp, he was independent and could do what a typically abled 12-year-old kid gets to do.

When it was time to pick Shane up on Sunday afternoon, we were so emotional and happy to see him. He was happy to see us, too. During camp, he received love, attention, and care. It was a truly special time.

Having a child with special needs is often a journey where you feel alone. We are very grateful to the many people who spent their weekend with Shane so that we could feel human again. It was amazing and a real blessing.

Shane kept saying, “I want camp,” for many days after the weekend. He has also taken on a new love of rock climbing, which we get to enjoy at a local indoor rock-climbing gym. We are so grateful for Jill’s House and look forward to many years of more weekend camp experiences. Thank you, Jill’s House, for coming to New Jersey!

Thank you for making stories like Shane’s possible.

The Edelbrock Family

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Told by Laura Edelbrock

Before Emma was born, my husband and I both had full-time careers in music. I was a high school music teacher, and he had served with the US Army Band for 35 years. Then in 2000, God gave us Emma! We knew before she was born that she would have Down syndrome, and when she reached puberty, we learned that she was autistic as well. We moved from a lifestyle of practice, performance, and perfection to this lovely life we now have with Emma, which we like to call the real life!

 

When I was six months pregnant, we found out that Emma would be delivered in this beautiful package, and for the next three months we embarked on a journey to prepare our lives and our hearts for her. But we spent many sleepless nights worrying about the future of our family. One such night, when I just couldn’t seem to fall asleep, I decided to read the Bible, knowing that was where I would find the comfort my heart longed for. I was reading a passage in Luke about the two disciples on the road to Emmaus. This was a story I had read often, but that night, I heard God’s voice clearly speaking to me.

The two disciples were talking to each other, despondent, when they were met by a stranger. The stranger asked them, “So, what are you talking about?” They simply responded, “We had hoped for something different.” I had to stop reading. That was us! We had hoped for something very different with our pregnancy and with our family. But then as I continued to read the story, I was reminded that the stranger on the road was the risen Christ. Jesus had come for the brokenhearted. He had come for us! My heart cried out, and I started weeping. I looked down at the Bible, my vision so blurry that I couldn’t even make out the heading of the section I had just read—“On the Road to Emmaus.” Through my tears, I saw the word “Emmaus” split into “Emma” and “us.” God had given us her name, and I knew in that moment that we were exactly where we were supposed to be.

Emma was born on a beautiful snowy day. We could feel the peace around us, and on our ride home from the hospital, we felt the need to stop at our church, where we found our pastor in his office. We had been surrounded with love and understanding during our pregnancy, and that afternoon, with our pastor, we dedicated Emma and our life to the Lord.

We knew that from that moment on our lives would be radically different, and for 23 years, God has not stopped writing our story into a memorable tale.

Emma started attending Jill’s House in 2014, but it took us a long time to get to that point. In my mind, I thought Jill’s House was for families who had children with different needs than ours. However, as Emma approached puberty and we began facing new challenges, we were encouraged to reconsider Jill’s House. Not just for Emma but for us!

We cautiously moved forward with our decision. Our intake meetings were successful, but we were unsure how Emma would respond to staying overnight in a new place, away from us. We worked with our intake team to create a “social story” of Jill’s House on her iPad, uploading pictures and videos of the different rooms at Jill’s House and then inserting her own picture into those rooms. The story helped us introduce her to Jill’s House and all the activities she would participate in while staying there.

 

When Emma’s first visit arrived, we still weren’t sure how her time away from us would pan out. Would we get a call in an hour or late at night? We never received a call, and when we picked her up at the end of the weekend, she was so happy. The staff kept thanking us for allowing them to spend the weekend with her! After a few more overnight stays at Jill’s House, she would barely wait for the car to come to a complete stop before jumping out and running into the building.

The blessing of Jill’s House goes far beyond Emma’s overnight stays—they continue in the form of family retreats, Bible studies, women’s retreats, and marriage retreats. Now that Emma is 23 years old and out of school, we have established relationships with other parents who are in the same situation as we are. We encourage one another and share resources.

Emma is nonverbal, but she is incredibly expressive, so daily maintenance can get busy and jumbled. That’s where Jill’s House blesses us the most! God led us to Jill’s House—a place that lets Emma do what she loves the most while allowing us the time to rest. She would return to a quiet and peaceful home, and rejuvenated, we would be able to completely dedicate our time to her.

Our story took a big turn, but God was so good to prepare us for it, and he continues to keep us close. Emma is such a blessing to our family and to others around us, and through Emma, we have been blessed by Jill’s House.

Thank you for making stories like Emma’s possible.

The Edwards Family

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Told by Cathy Edwards

Keith is the youngest of our six grown children. We are blessed to have four grandchildren, with one more on the way. Every day, we are grateful for the ways God has shown his love for us, through our family.

When Keith was born, I could feel the grace and patience of Jesus’s love for him in my soul. Keith was born with Down syndrome and autism; but we all knew that Keith was God’s perfect plan. He is now 21 years old and has been attending Jill’s House since 2010. If Jill’s House had not been part of our lives for all these years, it’s hard to imagine how things would’ve been.

Keith’s first weekend stay at Jill’s House was two months after it had opened, in 2010, when he was 11 years old. We were so nervous, as we had never before considered the idea of respite or our child staying away from home overnight. But I’ll never forget the look on his face when we were driving home after the first weekend. He appeared to be in a kind of dream state, as if he were replaying the whole weekend in his mind. It was almost as if he couldn’t believe it was real; maybe he was wondering if it was going to happen again. He was quiet. And this type of behavior wasn’t typical for him; so I knew, at that moment, that Jill’s House was really something special.

Between each visit, Keith would mark the days on the calendar until his next visit. He had been going to Jill’s House for about a year, when we began noticing how comfortable he was. He would walk into the building and say, “POD two, please!” He was so at ease that it was almost as if he were checking into a hotel.

Though Jill’s House has mostly been for Keith’s benefit, it feels like God has used Keith and Jill’s House to impact the whole family!

After observing Keith at Jill’s House, our middle daughter applied to be a volunteer there. Later, she took a staff position. She said that she had never worked at a place where people just loved to be there. She had once considered going into Nutrition. But, observing Keith at Jill’s House and being on the team as a volunteer and an employee changed her heart, and consequently her career path. When you witness people come forward to help fund a cause or help serve, it replaces fear with love. It inspires you to step up and do the same. We feel that there is no other place in the world for families like ours. Our daughter is now a Special Education Teacher.

When Keith was younger and we were attending the McLean Bible Church (MBC), we were excited about Jill’s House opening in the community. Before that, Keith would participate in the Access Ministry at the church, while we would attend the worship service. It was during that time when our faith in God’s sovereign plan was really nurtured. We were attending the MBC, so Keith could participate in the Access Ministry. However, we believe that God provided a space for Keith, so my husband would return to church. It was while we were attending the MBC that my husband accepted Jesus as his savior.

God’s plan, for our lives, is always greater than our plan!

While we feel very fortunate that Keith has had all this time at Jill’s House, we also feel sad that he will be aging out of the program in a few months. Our dream is that Jill’s House continues to help families, even as kids grow into adulthood. Jill’s House brings such joy and comfort to families!

Keith loves interacting with people, using technology, and making people laugh. He loves kids and will be assisting us as we develop a Special Needs Ministry, at our new church. We are excited to see how God uses Keith to bless others in the future!

God’s plan is always greater than anything we could possibly dream of, and God’s grace is always sufficient.

Thank you for making stories like Keith’s possible.

The Knowlton Family

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Meet Margot and Family

“To describe Margot in one word it would be, tenacious! She is a great friend, and a strong advocate for kids with special needs. She is sensitive to the needs of others and has such a great spirit! Margot was born with Down Syndrome and has always had to work extra hard to do simple things. But she is wonderfully tenacious.”

“Margot considers herself to be an average 15-year-old high schooler and she has a good group of friends. She has an older brother who will be going off to college in the fall, and a 4-year-old brother we adopted after fostering him when he was a baby. We know Margot sometimes feels left out, being a girl with special needs in the middle of her brothers, but she truly loves her family.”

“As a toddler we received in-home therapy support and the therapists would often come to the home with their bags of toys and treats. Margot quickly learned that bags were like a treasure chest! You never know what is inside. If we were at the beach or with other friends, she would often go through bags hoping to find something fun. She had such a light even as young toddler that her inquisitiveness wasn’t a bother! She has always been very curious of people”

“Now that Margot is 15 years old her curiosity has turned into compassion. Margot was crowned Miss Illinois Amazing Junior Teen and she will be going to Nationals in July. This is an advocacy event that empowers young women with special needs to speak up for themselves, to gain confidence, and to inspire others. Margot wants to be a writer when she grows up and has been doing a lot of writing. She also volunteers, does charity events, and advocacy work for kids with disabilities. We are so proud of her!”

“Margot has a great friend group of kids who have special needs and some who do not. Margot would say that she and her friend group are ‘Really cool!’ . They do typical teenage things like go to the movie theater, go to McDonald’s, or hang out at each other’s home. Though she has great time with her friends and her family, we also know that she needs something special and just for her. Margot’s special place is Jill’s House Windy City Camp!”

“We were so happy to learn about Jill’s House around 4 years ago. A friend of ours shared that she was working at the Windy City Camp. I had no idea this camp existed! We connected with the camp staff and immediately enrolled her.”

“Now that Margot has been going to camp for several years, she has developed some favorite things about camp. For starters, Margot considers herself a foodie and says the food is really good! She also loves having a camp buddy. But hands down, her most favorite thing about camp is the Talent Show. Margot will carefully prepare for the Talent Show. She plans what she will do and what props she will bring. She will sometimes dance or sing along to a favorite song.

“Camp has been so great for Margot! She knows a few of the girls who attend camp regularly, and she loves being able to spend time with other kids who have different special needs than herself. In our family with an older brother and a younger brother, camp is Margot’s special place where she gets her special attention. While Margot is at camp, we spend one on one time with our other kids. We are relaxed because we know that Margot is cared for. The nurses really show love and care for Margot, and that means so much to us. When we pick up Margot from camp, she chatters about her camp experiences for the first few minutes of the 90-minute car ride home. She will sing her favorite camp song, “Father’s House” and share about the talent show. But camp is also exhausting! It never takes long before she is fast asleep.”

“We are so grateful for Jill’s House and the Windy City Camp and providing Margot a place to be herself and feel special.”

Thank you for making stories like Margot’s possible.