The Perez Family
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.
Told by Laura Edelbrock
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.
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.
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.
“Before moving to Virginia, we lived in Oklahoma, which is where Charleigh was born, New York, and Texas. Charleigh was much younger when we received the first diagnosis of Severe ASD.”
“Shortly after arriving in Virginia, Charleigh’s developmental pediatrician asked if we had heard about Jill’s House, which of course we hadn’t. Hearing about Jill’s House was a complete blessing!! We were so focused on providing the best care for Charleigh, that the idea of respite had never entered our minds.
Meet Margot and Family
“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!”
“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.
Our older children range in age from 32-18, and after them comes our son, Peter, who is 11! Peter has Down syndrome, and once we learned all about the joys of Down syndrome, as well as the need for international adoption of children with disabilities; we became interested in pursuing that option as well. Here in the United States, there is a waiting list to adopt children with Down syndrome, but in other countries those children are often institutionalized. In Russia, at that time, children with Down syndrome were often sent to a psychiatric institution after the age of 5 or 6. That reality tore at our hearts. On top of that, Peter is much younger than his siblings, plus making friends requires lots of support, so we could see the value of a special inter-family friendship. It was a process that we started hesitatingly and prayerfully. Our agency happened to have a strong connection to China, so we eventually met our son Stephen through an assortment of little pictures and finally brought him home in 2014, which means he has been a part of our family nearly 7 years!
Peter and Stephen have grown up together! Stephen, who just turned 10, teaches Peter to be gentler, and Peter teaches Stephen to be more adventurous. Like Peter, Stephen has Down syndrome, and he has autism as well. He is almost completely non-verbal, although he can make noises to mean “Home” and “Mama”… we’re working on one for “Papa”, too!
The boys are little buddies, always playing together, inside and out. They are very different but have a lot of the same interests—which means they LOVE going to Jill’s House Blue Ridge Camp together! They’ve always gone together, which they really prefer. Their friendship is very sweet, which has been so important for each of them to have during the pandemic. We cannot even imagine what it would have been like for them to be on their own during this time.
The boys were planning on going to Blue Ridge Camp on March 13th 2020, the weekend that everything shut down! That was such a big heartbreak for us, that the world shut down on that particular weekend. That morning we had the boys’ bags packed and we thought that time at camp would be how they spent their weekend. We are SO glad to say that we have been able to come to Jill’s House Blue Ridge Camp since it reopened, which has been a joyful highlight for both the boys and for us.
Jill’s House is a place that we really have confidence—the staff are familiar with the disabilities that our children have, there is full understanding of the medical needs of our children, and the combination of fun and structure of Jill’s House is amazing. We are very fortunate that our boys are physically capable to go adventure around outside. We were stunned that there was a place that even existed like this, and the glowing recommendation of a friend is what drew us to it initially. She referred to it as “a spa for special needs children”—how accurate!
Jill’s House is such a unique operation. When we have told people in other places about Jill’s House, people who don’t have access to what we do through Jill’s House, they are amazed, because it’s hard to find programs like this. We are so grateful that we have such a wonderful thing—there really is nothing else like it. My husband, Chris, and I don’t have parents who are able to take the boys and care for them, and it’s helpful when an attendant comes to our home, but it is certainly nothing like what Jill’s House frees us up to do, including special events with our older children. It meant so much to our daughter that we drove up to her college to attend a parent’s event, were able to spend the night, and spend the next day with her—things we absolutely could not do without our boys staying overnight at Jill’s House Camp!
January 29 | 3 minute read
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.”
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!”
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.