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 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.

The Smith Family

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January 29  |  3 minute read

“Jessica and I are missionary kids from Southeast Asia and high school sweethearts! After getting married, we spent some time in Alaska—in fact, on our first Sunday at our church there, we announced that Jessica was pregnant! We had lost our firstborn shortly after she was born, so we were very excited about this next pregnancy. Lo and behold, our son Trevor came two weeks early that summer. 24 hours after he was born, he started turning blue, so we were medevaced off the island to a children’s hospital in Seattle. A few days later the doctors found out Trevor had Down syndrome, which was a complete shock to us. No one in our extended family was familiar with Down Syndrome in any way—so not only were we surprised, but we were also unequipped and very much alone.”

“Trevor has transformed our life in many ways and has given us a passion for the special needs community. A door opened when we heard whisperings about the Jill’s House Windy City camp. When we found out that was an option, we pursued it, hard. Once it opened, we were at the very first Windy City Camp weekend and have been at almost every camp since!

Respite opportunities are very hard to find—especially in Illinois. There is very little funding for it, especially in Illinois. Children who have special needs carry their own challenges, so that certainly impacts the options for someone to provide respite care. There is no other organization we know of that facilitates nights away like Jill’s House does. Jill’s House is tackling and pioneering a very challenging task, and for that we are very grateful.”

“It is a bigger ask to request family to stay with Trevor overnight and he doesn’t have friends that he goes to have sleepovers with. Knowing that we could send him away for a whole weekend, that he would have a total blast, and that we could do something together or take our other kids on special adventures was HUGE. It really is something that he looks forward to in a big way—he is such a huge fan of Jill’s House, and it is a very special privilege to have something so cool that he really loves. He has a great time, every time.

Trevor is very unique—I don’t think we’ve ever met a child with Down syndrome like Trevor. He is very high-functioning, very verbal, very involved in all parts of life, and is very athletic (he loves doing high intensity workouts!). Trevor loves to play his drums, he is deeply loyal to his high school (he is super proud to be a Tiger!), and absolutely loves movies. In fact, at Windy City Camp he will organize the entire Jill’s House staff into all the parts and characters of movies, and then they reenact the entire film, wearing costumes, as Trevor narrates!”

“Besides running camp like he is the prince there; Trevor tells us that his favorite things about camp are ‘his buddy and the s’mores’. The buddy he is paired with each weekend becomes his new best friend for life!

We had a nearly year-long break during the pandemic, but once Camp Windy City opened back up, Trevor was able to go again! He verbally expressed several times how much he missed Windy City Camp during that time.

Another thing that we are so grateful for about Windy City Camp is the staff: they are just fantastic to interact with. They are enthusiastic and professional and joyful all at once. The paperwork they do is proof that they are tracking Trevor so closely: an indicator of how intentional the staff try to be. Jill’s House does everything they can to make each weekend a special weekend.

At home, there is pressure on our other kids to include him, or on me to entertain him. While he is having his own weekend adventure at Windy City, we can all relax. We don’t have the added level of “Well, what’s Trevor going to do? How is he going to engage?” We miss him when he’s gone, we are always ready to have him back, and we love hearing about his fun times at camp, but it is very lovely to just have that brief time of relief from the ongoing stress and tension we feel each day.”

“Churches are often looking to bless families like ours. They have big hearts, they are well-intentioned, but the ways they are typically able to help is not what we truly need at the core. They will do a big Saturday morning activity or show a movie for families affected by disability. But that limited time is not true respite. What our family really needs is a weekend off. That is too hard for a church to pull off without the help of a place like Jill’s House.

That being said, Trevor has gone to a full week-long camp before. He had the time of his life, but he was out of his routine, and we ended up doing damage control at the end of it. For that reason, a weekend is a very reasonable amount of time to entrust others to care for Trevor. Jill’s House is not long enough that things will get overlooked, but long enough that we all get that true respite: Windy City Camp is the perfect amount of time for Trevor and for us.

Unless you have a child with special needs and live the day-to-day underlying stress that that places on a family, and then feel the relief when that is taken away temporarily, I think it would be hard to understand exactly how amazing Jill’s House is for a family like ours. All we can say is a huge thank you to you for making this opportunity possible and accessible for us and for Trevor.”