Finding Support is Challenging

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One of our new Jill’s House families recently had their daughter spend her first weekend at our location in upstate New Jersey. Here is one thing they said about their experience:

“Finding support is challenging. [Our daughter’s] weekend away at camp was the first time we were alone in 11 years. We were so excited to have this time together that we probably stacked our weekend with too many fun things, but it was very special for us. The best part of our weekend by far was knowing that [our daughter] was safe and having a great time.”

There are so many important points to unpack in those few sentences. Their words highlight…

  1. The general lack of services for families raising kids with intellectual disabilities.
  2. How difficult (near impossible!) it can be for parents to find time for themselves.
  3. The HUGE amount of trust parents put in us when they place their kids under our care and how critical it is for them to have peace of mind when their child is at Jill’s House.

I could go on and on, but I just want to share one more insight from this quote: the vast majority of parents raising children with disabilities aren’t choosing between getting respite at Jill’s House or from the other respite center down the street. Typically, they are choosing to get respite from Jill’s House or they are getting no respite at all (e.g., the parents above got time to themselves for the first time in 11 years!).

All that to say…thank you for all each and every one of you do to make it possible for us to love and serve our Jill’s House families. As you can see, you are adding unique value to their lives and making a huge difference for them and their kids.

In a Different Key

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I am currently reading a book called “In a Different Key: The Story of Autism,” which traces the story from the 1930s through today. As I was reading today, I was struck by one particular story and snippet in the book.

The authors recount the story of a 1970s California couple, George and Alice, who first provided foster care for a child, Frankie, who had autism and then went on to adopt him. George and Alice, along with others, had also gone out of their way to build a network of parents raising children with autism. About this network, the authors write, “There were not many of them in the circle, a couple dozen parents at most. But for George and Alice, and many of the others, knowing they were part of a community gave them the energy to hang on and fight.” Emphasis is mine.

Here we are fifty years later, and although we’ve made a lot of progress as a society in the way in which people with disabilities and their families are viewed and treated, community remains so critically important to families raising children with disabilities. We hear so frequently from our Jill’s House families that they feel isolated. And as vital as the respite Jill’s House provides is to them, knowing that there is also a community where they will be accepted, loved, and celebrated not in spite of who they are, but precisely because of who they are is a game-changer. The words the authors wrote could so easily have come out of the mouths of one of our Jill’s House families.

Thank you for all you do to help make Jill’s House a nurturing community for the families we are privileged to love and serve.

 

Warmly,

Joel Dillon

The Only Place

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Perhaps God’s greatest blessing on Jill’s House is the people he has called to serve here. They go above and beyond for our kids and their families in so many ways, which is ultimately what makes the services we provide so impactful for our JH families. I won’t say that is a totally unique aspect of Jill’s House, but I think it is fair to say it as at least distinctive.

Twice per week, our supervisors send out “debriefs” to the rest of the team on how things have been going. There’s a lot of technical information in those debriefs, but there’s also some room for sharing highlights. Below is some feedback that came from one of our supervisors earlier today. Please take a moment to read. It demonstrates not only the excellence of our staff here at Jill’s House, but more importantly, the difference that makes for our families. She writes:

“We have a kiddo that has high energy to the max. He loves to run, scream, loop videos of the Metro, pull his pants down, and occasionally go try to pull the fire alarm. He has been at Jill’s House for a couple of years now, and he has had his ups and downs. Right now, in life, he is a little down. So, when parents came in, we made sure to talk to them and see how better we could serve him. They were so apologetic, and you could see the frustration in their faces. We assured them that he would have a wonderful time and we had known him for years now and that there is nothing to worry about.

Just as we thought, he had a smooth, beautiful stay…[One of our Jill’s House staff members] had helped at times when he got excited to calm him down. She even got him to share his crayons and make artwork to send home.

In the morning, a tired but rested dad came to pick him up, and when we told him of his wonderful stay, he teared up and let me know how much that meant to him. He expressed how much [his son] loved coming to Jill’s House, and this was the only place they felt comfortable and trusted enough to send their child. By the time [he] came out to go, dad seemed to be less worried and both of us were teary eyed.

Through this, I wanted to highlight how sometimes the world views [our JH kiddos] as troubled, we view as a blessing and know that the love of God flows through our [staff] to our clients. That love of God makes a huge difference, giving [our JH kiddos] the freedom to be themselves and giving parents the gift of complete rest.”

Please join me in thanking God for the wonderful people he has called to serve here at Jill’s House.

A Step Forward

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Below is a note we recently received from one of the families we serve at our Chicago location. Her daughter just aged out of our program and spent her last weekend at Jill’s House a few weeks ago. It articulates many of our hopes for what families will experience at Jill’s House: “life-changing” rest for families and an environment for kids with disabilities where they are welcomed, embraced, loved, and celebrated just as they are.

“Hi,

This has been an amazing experience for us. I remember the first time we dropped [our daughter] of. I could almost not sleep that night, and we stayed only about ten minutes away. I waited for each update from you and your staff, and the pictures you sent of [her] smiling from ear to ear almost made me cry.

It took so long for us to give overnight camp a try, and your camp, and all of your loving staff, gave us the reassurance that we needed that not only could [she] handle being away from us, but she actually thrived. She LOVED every minute of it. It made us so proud of her, but it also made us proud of us because we were the ones that really had to push ourselves to try this. She had only ever stayed over at her grandparents’ houses. This was a huge step for us, and honestly, life-changing. I spent the entire drive home from picking [her] up from her last camp with you researching options for kids who are 18 or older. We know [she] needs opportunities like this in her life, and so do we. This gave me a profound understanding of how much [my husband] and I really do need that respite, and how ready [she] is for new opportunities and friendships.

[Our daughter] loved the card you all wrote her and it is in her dresser. She will be ecstatic with the photo album. And once we get a list of camps we have researched for older kids, I’d love to share it with you so you can pass it on to other parents. Your graduation ceremony was the icing on the cake, because instead of being sad, [she] felt proud of her accomplishment, and you all helped her celebrate that!

Thank you again for all that you have given our family!!
[A Jill’s House Mom]

A Beacon of Hope

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A few years ago, one of our Jill’s House dads said this about his son with disabilities:

“[He] is our ‘little piece of heaven,’ as we like to say. In the eyes of Heaven, we know that [he] is a child of God, precious and perfect in his sight…It’s important to know that we look at [our son] not as a burden, but as a blessing directly from God…Even so, the fact is that [he] is entirely dependent on us for everything…He requires around-the-clock care in order to feed him, to clothe him, to bathe him, to monitor him during the night, to give him his medications, and to position him in various locations throughout the day…This level of care, especially over a long period of time, takes a physical, psychological, and financial toll on the caregiver…[This] can often make on feel unusually burdened, isolated, alone, afraid, worried, dark, hopeless, and mentally and physically exhausted. Pure exhaustion. In the mind of the caregiver, there seems to be no answer to this.

I’m here to tell you that there now is an answer to this. And that answer is Jill’s House.

[Our son’s] first weekend there gave us the priceless gift of the first night in over seven years when my wife and I did not have to provide care to [him]—it was [his] first night away from us in over seven years. For the first time in seven years, the abnormal was replaced with calm and a sense of normalcy. Fear was replaced with peace. Isolation was replaced with relationships and a sense of ‘home.’ Physical and psychological exhaustion was replaced with rest, encouragement, renewed energy, and last but certainly not least—hope.”

I was reminded of this quote as I drove up to Jill’s House today. After 13 years, we just had a new sign installed, and I was reflecting on what might go through the hearts and minds of our Jill’s House families when they see Jill’s House. By God’s grace, I’m hopeful that we will continue to be a beacon of hope for thousands more families over the decades to come.

Moms Retreat at Meadowkirk

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A couple of weekends ago, we invited 20 Jill’s House moms away for a “Moms Retreat.” At no cost to them, we took them to a lovely retreat center in horse country here in Virginia (www.meadowkirk.org), pampered them in many ways, gave them plenty of time to relax and enjoy one another’s company, and—most importantly—invited a Christian counselor to facilitate several sessions with them and share the love of God in Jesus Christ with them. These moms were from various faith backgrounds or none at all, and our hope is that God would use the weekend to draw them all closer to Himself.

Here’s what one of our moms wrote about the weekend:

“I think I forget how much I need to be with other moms of children with special needs to experience a sense of belonging. I don’t feel that very often, and this weekend reminded me of how good it feels to be known and understood. I came away feeling so thankful that through my son’s life, God has given me the opportunity to meet each mom who attended this weekend.”

Thank you for helping make experiences like this possible for our Jill’s House families. You are playing a unique and indispensable role in their lives, creating one of the only spaces where they feel “known and understood.”