Hart Family

Hart Family

January 29  |  3 minute read

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!

When we adopted Stephen, we didn’t know his full range of disabilities, which we’ve definitely had to adapt to. However, God works in mysterious ways, and it has been a wonderful thing for both boys. While there are sometimes challenges, Peter and Stephen are such special blessings who bring much joy to our family.

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.

On the flip side, our hands are full! We are so fortunate that Peter & Stephen have some older siblings to come in and out and help us, and of course we have Jill’s House as a huge help, too! But yes, as you can imagine, we fall asleep quickly at night!

The change that came with school when the pandemic hit was something huge to adapt to—it was a big challenge to supervise everything constantly. Zoom was hard for Peter and Stephen when everything first shut down. It was hard to keep sufficient structure initially, which is key for our sons.

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.

Because he is nonverbal, Stephen has a speaking device. On it, he has a page of places, and we had to add Jill’s House Camp because he really wants to say it! When Stephen sees the Jill’s House logo, or wants to count down the days—because we do count down the days until time at Jill’s House! —he uses his speaking device to communicate his excitement and anticipation.

There are reports that come home each time Peter and Stephen have had a stay, and they read: “What we love about Peter” and “What we love about Stevie”—they are just beautiful. They warm a parent’s heart. Based on what these reports say, and what Peter has said, he loves the high swing! He has a very adventurous spirit and loves anything in the outdoors, so Blue Ridge Camp is perfect for him. Stevie loves board games, so he really enjoys playing those with the counselors out at camp, but he also enjoys new things, like hayrides. The counselors give them one-on-one attention and yet guide them to be a part of the group, which is so good for our boys.

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!

Thank you for seeing the beauty of our children. That is what is most touching. We view Jill’s House as faith in action in the most beautiful way—everyone invested in Jill’s House loves and cares for people who are so often on the periphery. Thank you for making this amazing opportunity possible for families like ours, here in Virginia and all around the country.

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Alsup Family

Alsup Family

January 29  |  3 minute read

Turner has epilepsy, autism, a variety of intellectual disabilities, and some gut issues. There are daily challenges, but God gave me a sense of humor to survive. In addition to Turner, my husband and I have a 14-year-old daughter (you can imagine how that is!), and my joke is that they have really taken turns being the difficult one! They are our two teenagers at home, with totally different needs.

My family is very new to Jill’s House Rocky Top. After getting in all the paperwork, Turner was eligible for camp January of 2020…right before COVID hit. There was a small pause in camp, but Turner attended Rocky Top Camp all throughout 2020, and last month it was my turn to experience the care of Jill’s House. The retreat I went on was the first for not only Nashville Jill’s House moms, but any of the Weekend Adventures camps across the country! When I told Turner: “Hey, I am going to Jill’s House this weekend!” he said, “Well when do I get to go to Jill’s House?!” It was a typical teenager moment of “How come? I’m jealous!”

The retreat was a time of feeling so deeply understood. It was such a safe place and offered a time of feeling so known—the similar experiences between moms were crazy. A while back, I realized something was lacking in my social life—I don’t have as many friends who are special needs parents like me. The retreat provided the perfect amount of time to be with other moms, share stories, and encourage one another.

Any mom would choose the needs of their child over their own, and a special needs mom has to choose that in an intense way. It was hard to choose my own self care for an entire weekend—not because I am worried to leave Turner with my husband, as I’m fully confident in his abilities, but because that is a choice I’m so rarely presented with. I felt so rejuvenated and renewed coming back into the day-to-day work of being a special needs mom. Our speaker was excellent! The message for the whole group was so on point for the importance of caring for ourselves.

Another thing about being a special needs mom—there is so much attention to detail required. To have that attention to detail turned back my way and given to me was humbling. From the notes that camp staff will send to me after Turner’s weekend stays, to the chocolate placed by my door each night of the retreat—the extravagant attention to detail in everything Jill’s House does for us makes us feel so loved and cared for and seen. That never happens in my world!

And what a wonderful time to have this retreat—at the very start of the year! Particularly at the end of such a chaotic and stressful year. When everyone was nervous at the start of quarantine, we joked that as special needs parents, we had that down pat! Welcome to our world! We are all too familiar with an isolated life. However, it has proven even more challenging in the last year. There is a feeling of deep hopelessness for parents whose children cannot have a real routine during COVID, to be home 24/7 without any help. I (and certainly all the other mothers) often ask, “Will my child ever have a normal experience in the future? Ever have that reward of schedule and the things they desire?” For this reason alone, this retreat was absolutely wonderful for me, and even more wonderful for those who do not yet have their lives back. COVID makes the need for a retreat such as this even more important—maybe even doubly as important as before.

As someone invested in Jill’s House, you are doing a wonderful thing for a community very much in need. Respite is so hard to find physically as well as spiritually, and I know how much I appreciate Jill’s House, the other moms, and the vulnerability. It is a huge amount of trust. Jill’s House does a terrific job of creating that trust so that you can either share your child with them for a day of camp or open up on a mom’s weekend. The amount of work that Jill’s House puts into it is massive. I have never been on a special needs moms retreat—it was just amazing. Even just a women’s retreat through church cannot compare to how specific this one was. Thank you for meeting the needs of people like me.

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Smith Family

Smith Family

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.”  

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Seyena_Susu Family

Seyena_Susu Family

January 29  |  3 minute read

I am originally from Ghana, and am a single parent caring for Sesi, a child with special needs. As much as it can be challenging to raise any child in a typical household, being single makes it more so, but at the same time can be rewarding. Getting into Jill’s House took a while. The paperwork and the wait list were long processes, but once we were in, the Jill’s House experience was heaven-sent. I say heaven-sent, because they changed the course of our lives. Where there seemed to be no hope, we found solace and gained a family. Jill’s House is like a second family to Sesi and me—and Sesi absolutely loves to come to Jill’s House. You guys are just so open—you fully embrace her! Sesi is an absolute star at Jill’s House! You are friendly and you ensure that Sesi has everything she needs when she comes for a stay. Sesi is encouraged to do new things at Jill’s House: she is always willing to do new things, she just needs a little push. And you all believe in her enough to give her that push! She has grown so much with the experiences from Jill’s House and it lightens my heart just thinking of the HOPE they bring to so many families.

There’s so much to love about the Tyson’s program experience— Sesi loves hearing people play the piano during the chapel services. When she’s not on the playground, she loves singing and dancing. Beyond that, the opportunities the Blue Ridge weekend camp has offered us just blow my mind. Canoeing, kayaking, ziplining—she totally enjoys all of it.

When else would my daughter have the opportunity to try all of that? To be included in activities that others would instead hesitate to encourage her to participate in. Inclusion is big for me and I thank God for a place like this that embraces our abilities and gives us opportunities to experience the joy of life.

I don’t have to worry about her, ever. Like all other parents, on her first night at Jill’s House I was waiting on that phone call to let me know she needed to be picked up. And that call never came! I am given peace of mind that I have no need to worry, and I have never felt such peace of mind about Sesi before. She has so many people looking out for her, and in the best way possible. What else could I ask for?

You look out for not only my daughter, but also for me, too. When my mom died four years ago, and I was in the middle of my grieving process, I went on a moms retreat. The Family Support team made sure I went, because they knew I was mourning and needed that retreat. God took care of me through the conversations and activities that weekend. I could just sit back and listen, use my senses to rediscover the goodness of God even in the midst of my storm. That retreat was another heaven-sent! I went on another two years later, and at that point could really indulge and engage. During Sesi’s stays at Jill’s House, I use my respite time to really enjoy my discarded reading—I never have any time otherwise to read. I have time to clean the home and finally accomplish tasks I’ve been waiting to get done. Otherwise, I will just watch a movie by myself and take naps.

Thank you for creating a place that cherishes Sesi and supports me to breathe again. Your generosity has given me retreats where I can find time to reflect and read and sometimes also do a small act of kindness to others. Your generosity has given Sesi beautiful new opportunities for adventure, joy, and caregiver friends who adore her. I am so thankful to you. God richly bless you and multiply what you give in many different ways. 

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Rohan Family

Rohan Family

January 29  |  3 minute read

Jill’s House has been such a fun, safe place for Rohan. And for me, it’s been a profound experience. Watching other people care for my child without judgement and pure joy has helped me see him in a new way.

It all started because we were involved with McLean Bible’s Access Ministry, even before Jill’s House was built as Rohan would attend some of their day programs.  Every parent who has a child with special needs is apprehensive about leaving their child, but I had only heard amazing things about the program from other parents I knew.. Jill’s House had only been open a year when Rohan started, and I was really excited for him to try this new environment.

At the beginning, I was just dropping him off to get a break and to gain space to actually think, whereas the rest of the time I felt like I was in the fire and simply trying to survive. Over the years, my other boys have participated in the typical sibling nights and we attended family retreats and other events. Those retreats have changed the way I perceived having a child with a disability. The Jill’s House staff would write notes after Rohan’s weekend stays, saying how blessed they were to have him at Jill’s House, but those words only sunk in once I spent time with the caregivers. I watched their care of him on those weekend-long retreats, and it helped me view my son with greater acceptance, as well as feel a stronger connection than I did before.

My son is a wonderful young man whom I am grateful to have in my life.. He’s 13-years-old now, and loves music, so the music room is one of his favorite rooms. He has autism as well as a visual impairment—because of that, his hearing is the main sense he uses throughout the day and has become very acute. He really enjoys stories, because he can’t read the books himself, we listen to a lot of audiobooks and read aloud. He uses modified sign language and an iPad communication system. The staff at Jill’s House know and understand him so well, that he occasionally doesn’t need to say much!

Having this level of support in the community has made such a difference for people like our family, because there are just not many places I feel completely comfortable and at ease—where he is accepted for who he is, where he gets all his favorite things and it is like a mini-vacation every time he goes. That vacation is for all of us and has been literally healing. We are so fortunate to have Jill’s House in our life.

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Rankin Family

Rankin Family

January 29  |  3 minute read

There is so much to love about PJ. She is tender-hearted and intelligent. She shows a huge amount of affection and understands a lot (you think she can’t understand you, and then she does something related to what you’re talking about). She loves to joke around, but is also sensitive enough to pick up on other people’s emotions—I feel very connected to her emotionally. On top of all that, we cannot keep PJ home! She is an extremely active girl, so we pack her life with activities, whether that’s a walk around the national mall or a trip to the zoo. This is why Jill’s House is perfect for PJ—she doesn’t have a long attention span, so the fact that there are lots of options (lots for space for both indoor and outdoor activities) is great. She’s a fan of all the activities, from basketball to the moon-bounce. She enjoys your chapel too, and loves to look at books, so the library is another favorite space for her.

We first heard about Jill’s House when PJ was too young to attend, but people kept saying, “You need to look into it!” We waited until she was 7 years old to apply, and since then it’s been really wonderful. My first impression of Jill’s House was how beautiful the building is, and how impressive it is that the program is very organized in every way. You truly take care of all the details. I’ve always enjoyed the calls with the nurses about PJ, when they’re concerned about her and want to know how she’s doing. I look forward to the notes that come home with her, detailing what happened in her day. That really helps me feel comfortable. The staff has such a positive attitude toward PJ: they want to work with her and other kids with differences. We have really appreciated participating in family activities such as the Christmas event and Ticonderoga Farms Fall Festival.

The period between March (when Jill’s House shut down due to the pandemic) and coming back to Jill’s House was hard for us. Having PJ and our other two kids home has quite interfered with my work, and my husband’s work was also disrupted. On top of trying to navigate working without receiving any help from caregivers, PJ became more aggressive and tried to leave the house—like I mentioned, we can’t keep her home! Besides Jill’s House, not a lot of our other resources are open right now, so our options for care are limited. That makes us appreciate Jill’s House all the more. The weeks PJ came back over the summer, my husband and I were actually able to work, finally exercise, and take care of ourselves a little bit.

And PJ was so happy to go back! PJ keeps saying “bus” over and over because she just wants to go on the bus to school. Since that’s not an option, PJ was delighted to be able to go to Jill’s House. She’s very social—she loves to be out and about with people, she’s very extroverted, so her being alone in the house is her worst case scenario! For PJ, it’s been terrific to be in a community in which she’s set up to find more friends who also have special needs.

Another wonderful thing about Jill’s House is that it is more cost effective. Not all places oordinate with Medicaid, so other options are more financially prohibitive. I am so appreciative of the place Jill’s House has in the life of our family, and grateful for the people who make that possible. Thank you so much for your financial generosity in honor of children like PJ!

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