By / Jan 3

Everywhere we turn, it seems the sanctity of life is under constant assault. While society continues to turn this way and that, its consistent trajectory is undeniably toward the autonomy and supremacy of the individual—the all-important self. But not every individual is granted the same dignity.

As the pro-choice narrative has continued its cultural advance, the argument for aborting preborn babies has devolved into what has become the supposed absolute right of an individual to choose the fate of another life based on something as fickle as that person’s preference. The prizing of one individual’s choice has resulted in the lawful termination of scores and scores of little boys and girls. 

Policies targeted toward those with disabilities

Nowhere is this more apparent than in the conversation developing around the dignity and viability of people with Down syndrome, particularly babies in the womb. In the past several years, for example, a regulation was passed in the state of New York that required insurance plans to cover abortions, stating that health plans cannot “limit or exclude coverage for abortions that are [deemed] medically necessary” (emphasis added), an umbrella term that includes a lengthy list of disabilities.1https://www.supremecourt.gov/DocketPDF/20/20-1501/180185/20210526121754439_20-1501acTheChurchOfJesusChristOfLatter-DaySaints.pdf 

In the U.K., language is written into the country’s Abortion Act that permits abortion when “there is substantial risk that if the child were born it would suffer from physical or mental abnormalities as to be seriously handicapped” (emphasis added).2https://erlc.com/resource-library/articles/explainer-abortion-act-in-the-u-k-challenged-but-upheld-by-the-high-court/ In each of these examples, the language being used, ambiguous as it may seem, gives lawful allowance for taking the lives of preborn boys and girls with Down syndrome.

A special education

For years now, as an educator who teaches special education within the public school system, I (Juliana) have had the privilege of seeing firsthand what many proponents of these heart-wrenching abortion policies fail to see: the very real contributions that children with Down syndrome make to society. Too often, our advocacy for people with disabilities, while well-intended, stops short of recognizing that these individuals are not only worthy of life, but are an integral part of a healthy, functioning society. 

During my time as cheer sponsor of an inclusion cheer squad, for example, wherein female students with various disabilities were invited to join the varsity cheerleading squad, I watched as these students contributed to the culture and morale of the team. And I witnessed them carry out the role of a cheerleader with skill and competence. At an even greater magnitude, the same proved to be true in my experience as co-head of the delegation for our local Special Olympics chapter and our district’s Special Olympics club. These are people who have much to give and teach us.

I am the one who has learned the most as I’ve taught and led students and student-athletes with Down syndrome over the years. Often, it was them leading me, showing me what it means to love, work hard, empathize with others, overcome challenges, and always do it with joy. You might say I received a special education from them.

A Christian response

The inherent value and dignity of people with Down syndrome is not dependent on their contribution to society, of course, but on the fact that they bear the image of God as fully and irrevocably as every other person. And in the face of broadening abortion policies, Christians are to set ourselves apart as those who welcome babies and individuals with Down syndrome because they are created by God in his image.

But that’s not where our responsibilities end. Because people with Down Syndrome—babies and adults alike—are made in the imago Dei, they can and should be welcomed into the task of the cultural mandate, helping to bring about the sort of relational and societal flourishing reminiscent of the garden in Eden (Gen. 1:28; 2:15). They are just as equipped for this work as anyone.

This means that the people of God should lead the way in opposing abortion measures targeting babies with disabilities, care for these babies and their mothers, lead the charge in advocating for their integration into their communities, and show the watching world what a healthy, functioning society looks like by recognizing their abilities and giving them opportunities to contribute to its flourishing.

People of life

It is no overstatement to say that our secular society is on a campaign to stamp out individuals with Down syndrome and other disabilities. Disguised as an act of compassion toward the preborn baby and his or her mother, the right to choose has become an exercise in extinguishing these young, unique lives and depriving mothers of their children. And it is a choice often applauded by society at large. 

But Christians, informed by the Word of God and empowered by the Spirit of God, are called to an altogether different mission—one of true compassion, where the dignity of people with disabilities is acknowledged and where their lives are contended for from womb to tomb, in the courts and the delivery rooms and the classrooms across this country. 

People with Down syndrome, born or preborn, should not be seen as candidates for termination because of an extra chromosome. Instead, they should be seen as persons, made by God, loved by God, bearing his image, and fully capable of carrying out the cultural mandate right alongside the rest of us. And certainly, as we work shoulder to shoulder as co-laborers in the call of God, we will learn a few things from them. By God’s grace, we’ll be the ones who are recipients of a special education of our own.

  • 1
    https://www.supremecourt.gov/DocketPDF/20/20-1501/180185/20210526121754439_20-1501acTheChurchOfJesusChristOfLatter-DaySaints.pdf
  • 2
    https://erlc.com/resource-library/articles/explainer-abortion-act-in-the-u-k-challenged-but-upheld-by-the-high-court/
By / Nov 29

Steve and Martha have been attending Peace Church for 15 years. Their children are young adults and work. Their family is active in the church and the small groups ministry. Seth and Sharon are in the same small group. They have three children. Their two daughters are in the honors tracks at school, and they have an 8-year-old son with disabilities. He is presently labeled with developmental disabilities but will go through evaluation for one of the high-incidence disabilities. 

Both couples seem to bond. Steve and Martha want to be helpful to Seth and Sharon, but they find themselves asking questions like, “What can we do to be a support and listen to them? Where do we even start when our lives seem so different? Is there any way we could help bear their burdens and show the love of Christ?”

As the above example shows, parents of kids with disabilities have both similar and unique needs in comparison to other parents. Brothers and sisters in Christ want to help each other but may struggle to know the best path. Researchers have shows that families with disabilities need emotional support, navigational support, and informational support. Most importantly, they desire spiritual support. They need to be reminded of God’s love and his good purpose for them in this season of their life. As their friends and church members, we can be an asset to them and help bring them hope. But how can we do that wisely and not be harmful in how we help? 

Emotional support 

All parents need emotional support and understanding from their friends and church family. The Bible tells us that we are members of one body (Rom. 12). That means that when one part of the body is suffering, the whole body is suffering. And when one member is rejoicing, the whole body is rejoicing. As these families look to us, we might point them to scriptures that emphasize the promises of God, give wisdom, and bring hope. We can also acknowledge their suffering and challenges while listening and not giving advice. We shouldn’t immediately share our experiences, but instead demonstrate empathy. Looking at the Gospels, we see Jesus doing this again and again. He listened to those who came to him.  

Emotional support might also come by setting up peer-to-peer support groups through the church or offering respite nights for families such as the model seen in Jill’s House. Just as it is challenging for parents of any child to have time alone and ensure that their marriage is healthy and strong, it can be even more so for parents of children with special needs. As their brothers and sisters in Christ, we should be proactive in seeking out ways to provide that emotional support. And for parents who are just beginning to navigate life with disabilities, a “small cup of cold water” in the midst of much confusion will go a long way. 

Navigational support

Parents need help to know how and where to get the information, support, and therapies they require. In the story above, Seth and Sharon are going to be part of an “evaluation for disability,” and they may be intimidated or unclear about what that means. This is where the church can step in with practical assistance. We can help take some of the burden off of them by investigating different options. Or, we might listen and ask helpful questions as they talk about what they are learning. 

Another way that churches can assist is by seeking to know what tools are available in their area. Are there ministries in your city that help? What about health services? Having answers to these types of questions, or even thinking through what the questions might be, can help parents who are unsure of what comes next or where to turn. For parents who are on a steep learning curve, any assistance that the church can provide to help orient them and provide grounding is helpful. It can often feel as if there’s no time to learn or even reflect on what has happened, especially right after a diagnosis or during major changes in the life of their child, whether emotional, physical, or spiritual.

Informational support 

For parents and families, the first people they often go to for understanding and support are their close friends and church family. That means you. They may ask if you know anything about the websites and suggestions that are constantly being thrown at them. Do you know teachers, specialists, doctors, or nurses? While you don’t have to (and won’t) have all the answers, you can be a willing resource and connector as they are trying to find those answers. 

The internet has provided a plethora of information for parents of children with special needs. Though it should always be checked to ensure it is reputable, organizations and support groups online offer parents answers to questions that they either have now or likely will in the future. While each child and situation is unique, these can be good places for parents, and churches seeking to minister to parents, to start. Engaging Disabilities with the Gospel is an organization that exists to equip churches and families to serve members and friends. Similarly, Joni Eareckson Tada and her ministry, Joni and Friends, has done excellent work in this area. 

Additionally, books such as Stephanie Hubach’s Same Lake, Different Boat or Greg Lucas’ Wrestling an Angel can be helpful tools. 

Finally, realize that parents of children with special needs will have two types of questions: micro and macro levels. At the micro level, they may wonder what to do for a specific situation: How do I navigate the dentist? How do I handle discipline? What if he doesn’t play well with others? At the macro level, they are likely to face questions that tap into those deeper concerns and worries of being a parent: How can I trust God in this? What does God’s sovereignty mean in my situation? Depending on your specific context or experience, you may be able to answer some of these questions or know where your friends can turn. 

Spiritual support

The most important thing that churches can do is provide spiritual support to parents of children with special needs. Life is a marathon, not a sprint, and these parents will need assistance for the long haul. Child rearing is tough in the best of circumstances because every child and situation is different. But parents of children with special needs face additional struggles whether of inadequacy, stress, anxiety, or even just wondering what life will be like for their child. 

The church is uniquely equipped to answer those questions because we have a God who has spoken through his living and active Word. And he sent his Son, who is familiar with our sufferings and gives us his Spirit to guide us into all truth. God is faithful and provides grace and strength for each moment, even when we don’t know what to do. And we serve a God who has, in his wisdom, seen fit to bring together different members of the body to serve and care for one another. 

Getting back to our example at the beginning, Steve and Martha can listen and provide spiritual support to Seth and Sharon. As older parents, they will have important insights to share of the faithfulness of God. They can tell about how they have seen the Lord work through prayer, the Word, and faithful training in the lives of their children. Fundamentally, they can come alongside them as friends and provide a listening ear. They can pray for and with their friends and seek to encourage them with scriptures that God has used in their own lives.

We, as fellow believers in Christ Jesus, have a unique and wonderful opportunity to listen and support families who have children with disabilities in our churches. We can create a welcoming community where, if they are weary and confused, we can bring hope — a place where we are not trying to fix things but listen, empathize, support, and speak the truth in love as brothers and sisters in Christ.  As we “bear one another’s burdens and so fulfill the law of Christ,” (Gal. 6) we can help families with disabilities truly flourish as they are figuring out how to be faithful in the midst of God’s work in their lives. 

By / May 20

The Indispensable Podcast, hosted by Ethan and Michaela Holsteen, is a ministry of the Louisville Regional Baptist Association (LRBA). In the podcast’s second episode, Ethan and Michaela sat down with Robert and Hollie Brookman to hear about their family’s experience regarding the challenges and blessings of navigating special needs and the church. 

The LRBA was kind enough to allow the ERLC to transcribe a portion of that episode below. You can listen to season one of the podcast on their website or Apple Podcasts. Season two will be released soon. 

It’s exciting to be able to highlight a story about one local church’s ministry to a special needs family and also to celebrate how a local association of churches is working toward disability awareness.


Introduction: (00:00)
Grief can be isolating. When we go through loss, we often want to shrink back to put up walls and pull ourselves away from others. However, what we most often need is others around us, helping us to look up from our current situation to see how God is at work and be reminded of what is true, not ignoring the pain, but learning how to walk the path of suffering well while in Christian community.

Ethan Holsteen: (00:40)
In this episode, we had the privilege of sitting down with Robert and Hollie Brookman in their home to talk about their experiences wrestling with an unexpected diagnosis and realizing the value and necessity of the church community.

Michaela Holsteen: (01:04)
Robert and Hollie Brookman have three children. And at the time of this recording, Hannah was 3 1/2, Clara was 18 months, and they had another baby on the way. Hannah has Cri du Chat Syndrome. It’s also called 5p- (Five P Minus), and it’s a rare genetic disorder. According to the Five P Minus Society website, only 50 to 60 babies are born with this syndrome in the United States every year. Can you tell us a little bit more about Cri du Chat? What does that look like?

Hollie Brookman: (01:41)
Yes. So it is a rare genetic condition where she is missing a portion of her fifth chromosome. And really all that means is that it causes some developmental delays, and can cause some health problems too. It is a spectrum disorder. So it’s all over the map. One person with Cri du Chat may or may not have any of the same characteristics or qualities as the next person with Cri du Chat, but it does result in some developmental delays, both physical and cognitive, and for Hannah right now at 3 ½ , it looks like not being able to walk on her own without holding onto something and not being able to communicate verbally right now.

Michaela Holsteen: (02:45)
After Ethan and I heard a little bit more about Hannah’s disability, Hollie and Robert described the season of life before Hannah was born. Early on in pregnancy, physicians told Hollie and Robert that Hannah was developing slowly. At around 15 weeks, the doctors referred them to a high-risk clinic, thinking that Hannah might have had Down syndrome. However, after some noninvasive testing, Hollie and Robert received the news that Hannah likely had 5P-.

Robert Brookman: (03:14)
Results came back, and we got the phone call from the genetic counselor saying, “We think it’s Five P Minus. Our first reaction was to immediately go online and look up everything we could about that. She told us not to, but right off the bat we found a lot of resources from the Five P Minus Society, which is the national support society for families

So, we felt like we were going to wait to follow up with a lot of that stuff until the diagnosis was actually confirmed. But I mean, overall, our first reaction was, I don’t know how you would describe it, but . . . 

Hollie Brookman: (03:59)
Well, the testing that we did was not conclusive testing. I think that’s kind of important for that to be established that it was a screening, and they really couldn’t, say, give us a percentage of how likely it was going to be, but only that it was very possible. And so our reaction was, “Well, let’s just not tell anyone until we know for sure.” It would have been the day that she was born when we would have figured it out. So we had several months where our first reaction was that we’re just going to keep this to ourselves. And we’re not going to tell anyone outside of maybe our parents and siblings. We were just holding onto this on our own and not really sharing it with anyone or trying to reach out or anything like that. And we lasted, how long do you think we lasted?

Robert Brookman: (04:54)
We got that phone call on a Friday, and we said, “You know what, we’re not going to tell anybody; we’re going to keep this to ourselves until we get conclusive results. We’re just going to operate as if that phone call hadn’t happened. And, um, that lasted for a day and a half. I remember on that Friday, we did not want to be alone. We called pretty much everybody in our community group to see if we could go out to dinner with somebody just to get out of our house and stop thinking about it. But you can’t stop thinking about . . .

Robert Brookman: (05:59)
So, I led our family down a very bad path. I know that for a fact. That first day we found out about this thing, it was like, “We we’re just going to . . . I told you, “We’re not going to tell anybody about this. We’re going to hold onto this. We’re not going to talk to anybody about it until we find out.” That was totally the wrong thing to do. Like just totally backward. Then we felt, “We need to tell somebody. We can’t hold on to this. Like we’re already crumbling under it, and it’s been 36 hours.”

Robert Brookman: (06:30)
It finally just hit us that if we are in a community group with a church that keeps saying that community is meant to be a support and to help carry the load and bear a lot of those burdens, and yet we’re not willing to let community do what it’s supposed to do because we’re just going to hang on to this out of our own pride and out of our own, you know . . . It’s our first kid, what do you expect? You just kind of go into it with rose-colored glasses thinking everything’s going to be fine, because that’s most people’s deal. You don’t really ever think, “Oh, the first one’s going to have a genetic disorder.” So, yeah, we made it probably a day and a half before the first people we told, who were our parents.

Robert Brookman: (07:16)
It was something to finally start to unload that. And then, you know, Sunday, obviously, we met with our community group and it was just like, this is going to be difficult to even just tell people this, because of fighting a lot of those feelings of pride and of worry and anxiety and all of it. But you know, people surprise you with how they react to stuff and you think, Oh, well, I’m so focused on how I don’t want to share this that I’ve totally lost sight of how everyone else is going to react in an encouraging way. And that’s all that we received — just encouragement time and time again.

Hollie Brookman: (08:19)
It was several months of ups and downs of emotions. And I was so thankful that we did share with our community group, because I had a lot of women in our group who were pouring into me and pointing me to the truth and reminding me that God is still good in this and that he still has a plan for her life and that it’s to glorify him no matter what she looks like, no matter her genetic makeup, no matter if she can walk or talk. And it was just so important for me to be able to hear that, to hear something that was true rather than what a lot of people’s first reaction is when you tell them something like this: “Oh, well maybe, maybe the test is wrong or, well, maybe she’ll outgrow it, or maybe . . . or, man, that’s really stinks. You do not deserve to have this happen to you.”

Hollie Brookman: (09:15)
And so it was really good that we did share it, because there were people that we trusted who were wise that could be praying for us and could point us to biblical truth throughout those months when we just didn’t know what was going to happen, but we were still processing and mourning what we thought our child was going to be coming to terms with — what God was giving us — which in the end it was still good even though it didn’t necessarily feel good at the time.

… 

Michaela Holsteen: (12:11)
So what were some specific Scriptures or biblical truths that you were clinging to during that season?

Robert Brookman: (12:17)
The one passage that I constantly go back to, that I read very early on during the pregnancy after we found out about 5P- was John 9. It’s Jesus and the disciples walking along, and they come upon a man that was born blind. So, the disciples at the beginning of the chapter lean over and they’re like, “Hey, do you know who sinned, this man or his parents, to make him born blind?” And Jesus’s reaction is, “That’s not the point. The point is not that someone did something that caused this. The point is that God’s strength and power and plan would be shown through this person’s life because he was born blind.” And then, you know, the chapter continues on, but that first five or so verses of that chapter where that interaction happens, there’s so much you can pull from that.

Robert Brookman: (13:10)
I mean, the fact that it’s not the Pharisees that are asking this question, it’s the disciples. It’s the people that you would expect to have the right answer and to know what to say in that moment who are the guys that end up asking just a really ridiculous question. And the fact that Jesus says that the point is not something happened because of something they did. You know, I think some people have the idea that special needs or things that happen like that are born out of some kind of circumstance whether that’s spiritual or otherwise. I don’t think that has anything to do with it. God has predestined people to be born differently than us. And so you know, for us, that was a really huge piece of Scripture. It was just saying that Hannah was going to be born the way she was not because of anything that we did, not because of sin in our lives that caused God’s wrath to come down on us in the form of this special needs child. Instead, it was all about the fact that God wanted this to be a part of our family’s future. And there was a plan behind it all. 

… 

Hollie Brookman: (15:03)
Yeah, it definitely shifted our focus from being internal to asking, “What is the purpose of this?” Ultimately, it’s to glorify God somehow. We might not see it now. We might not be able to conjure up some reason why God would put this in our lives, but it’s to bring him glory. And we’re going to understand that someday. I don’t know when, but we will understand it someday. What helped me in the transition from mourning the idea of what my child, my first child, was going to be like and wrestling with those emotions that come with that but not wanting those emotions to take over and make me feel like I didn’t deserve this and that God was not being good and that God was punishing me for whatever reason was: I kept being pointed to this story that comes out of Mark 9, where there’s a boy with an unclean spirit and the disciples bring this father and the boy to Jesus because the disciples have been unable to cast the spirit out.

Hollie Brookman: (16:05)
And so the man says to Jesus, “If you can do anything, have compassion on us and help us.” And then Jesus said to him, “If I can? All things are possible for one who believes!” And immediately the father of the child cried out and said, “I believe. Help my unbelief.” And that was something that I had to cry out to the Lord about often when I was in tears and a complete mess —j ust in those spirals of emotions. And at the same time, knowing God is still in control and God is still good, but there’s parts of me that didn’t believe that in those moments. And so just crying that out over and over again was something that I did as we were working through this. And that stuck out to me. And that’s something that a wise woman that I had talked to about what was going on had pointed me to from the beginning. And it’s just something that I clung to throughout the whole season of our life, where we didn’t know what was happening.

Ethan Holsteen: (17:08)
After much anticipation and a challenging delivery, Hannah was born. Her diagnosis was quickly confirmed for Robert and Hollie when they heard their newborn daughter’s unique cat-like cry which is characteristic of Cri du Chat syndrome. Further genetic testing made the diagnosis official. However, instead of feeling the anguish of anxiety upon confirmation of Hannah’s diagnosis, by God’s grace, they felt peace as well as the excitement and joy of finally meeting their daughter.

Michaela Holsteen: (17:39)
Three years later, Robert and Hollie have welcomed another little girl into their family and are awaiting the arrival of a third. Their life is not what they originally expected, but the joy and hope that they have in the faithfulness of Christ is evident. Their days now are filled with lots of laughs, spilled oatmeal, trips to multiple therapies, and filling out endless Medicaid waiver forms, yet they wouldn’t change a thing.

Ethan Holsteen: (18:07)
What does church life look like for your family? Some of the positives, some of the challenges.

Robert Brookman: (18:12)
Yeah, so, our church doesn’t have a ton of special needs individuals in it to begin with. Especially in the kids’ ministry, there’s just not that many kids with special needs. And so, you know, us being the first, as we were looking for that John 9 purpose and asking, “What is the thing that God’s got in store for us as a family? Not only just for Hannah’s life, but for us,” we thought, “Maybe this is part of what God’s wanting us to do — to get our church involved in special needs.” Our whole mentality was leaning into our church family, not away from it. That’s what we did with our community group. I think most people’s first reaction when something hard happens is to lean out. You tend to draw away from church, because of either pride or hurt or feelings of isolation thinking, “I’m the only one dealing with this, so no one else will really understand it.” Our first tendency as people is just to get away from people, but the need is to lean in.

Robert Brookman: (19:58)
And so for us, that meant, “We’re not going to pull out of church or stop serving just because we have this child that’s medically complex, that has a lot more needs. We’re going to make it easy for our church to minister to her. So whether that was educating our leaders; I know we’ve met with our church leaders a bunch of times just to talk about how we as a church can better support special needs individuals. 

Robert Brookman: (20:47)
So we met with them to talk about that stuff. And we met with families that regularly served in Hannah’s classrooms to make sure that. . . . “Hey, I want you to understand that when she’s doing these things, here’s what these things mean.” We put together a book of signs after she had started signing, you know, most people don’t know ASL, “But in case she starts doing something where she needs to communicate with you, we want you to be able to understand what she’s trying to get you to do. And so here’s a little book of what the signs look like.” So for us, it was more about equipping the people that were there to serve us and make it as easy as we could on them so that we could continue to lean in.

… 

Hollie Brookman: (22:59)
People have been super gracious and just really wanting to serve our family in this area. And so that has been really encouraging for us — the way that our community group has come around us and adjusted the way we do things in our community groups so that we can still be involved but also not neglecting the needs of our children. But just that has been really, really encouraging for us, learning what the church body is actually supposed to look like. You know, just in general for me, that has been really helpful. I’ve just learned that, wow, this is what God is talking about when the early church is being formed in Acts and we see them bearing each other’s burdens and helping each other in all these different ways. We’re really experiencing that on a weekly basis.

Michaela Holsteen: (23:57)
Their church’s response could be summed up in two words, understanding and collaboration. First understanding that Hannah’s participation in Sunday school will look different than most and also understanding that she’ll need unique and individualized care when it comes to spiritual formation and discipleship into the future.

Ethan Holsteen: (24:17)
And second, collaboration, not in the form of a support group like Robert and Hollie originally thought but rather church members coming together with pastors to form what Robert described as a spiritual care team, a team of church members working together to help people with disabilities inside their church regarding their individualized needs, inclusion, and spiritual growth.

Ethan Holsteen: (24:41)
What would be one encouragement that you would share with families struggling to find their place in the church with a child with special needs?

… 

Robert Brookman: (25:49)
Sometimes it’s hard to hear, but you’re not a member of a club. You’re a member of a body. You are not meant to go and be a consumer and only be ministered to. The whole point of a church is, yes, you go and learn things and you can be ministered to, but every person in the church serves a different role. You know, some are meant to encourage, some are meant to go, and some are meant to speak. Some are meant to be encouraged and others are meant to be encouragers, but nobody in the church is meant to be an appendix — that part of the body that no one knows what it does. And if you got rid of it, no one would care. As a member of a church, you have a job. And that job is not just, “Oh, well, I serve, I sing on Sunday mornings. Oh, I do this thing.” That job is to be there and be a part of it. And it all comes back to leaning into church and leaning into community versus leaning out. The gut reaction in times of trials and trouble and things like that is to pull away. Emotionally, it’s the first thing you want to do because it protects you. Or at least it feels like it’s going to protect you.

Robert Brookman: (27:18)
We think, “If I pull away, then I don’t have to share the hard stuff. I don’t have to be vulnerable in front of people. I don’t have to have my pride hurt. I don’t have to share my life with anybody. And that all feels really okay in the moment. Then you get down the road a couple of weeks, a couple months, a couple of years. And it’s just like, “Man, why in the world did I pull away from that?” Or worse “Why didn’t they pursue me? Why didn’t they do all this stuff?” And it totally leaves off your responsibility to be a two-way street. Lean in. 

… 

Hollie Brookman: (30:18)
And I think along with that, just being willing to be that awkward person in your community group that starts crying when there’s a bunch of new people there and they have no idea what you’re talking about. But for me, this diagnosis has taught me so much about my own pride before Hannah was born. I didn’t really understand or value the church body or value a community group. And the way that God’s timing worked out is incredible because he got us involved in the community a couple of months before we got pregnant with Hannah, and he just used that whole situation to teach me that everyone is broken and everyone is dealing with something. And he has designed people to need other people, to need the church body and to work together to encourage, and to point one another to truth.

… 

Hollie Brookman: (31:42)
My encouragement to others is just as Robert was saying to lean into it and be willing to experience something that’s uncomfortable for the purpose of experiencing what God intended the church body and community to be. 

Michaela Holsteen: (33:43)
One of the things that I really appreciated about Robert and Hollie was their transparency when it came to their initial reaction to lean away from the community and to work through this on their own. Even in the early stages of finding out that their baby could potentially have a diagnosis and how they very early on realized that they actually needed to press into the community. And they found so much comfort and support, even in surprising ways, ways they didn’t expect it.

Ethan Holsteen: (34:17)
I think once they were in that community and were interacting with the church, the church’s response was what struck me was, “Let’s create a team of people with the parents, with other people from the church to help serve this family well.” And I think that’s a good example that you don’t have to have a special needs ministry, like a formal one, in order to care. Just get with the family and do something.

Michaela Holsteen: (34:45)
Right. And they also talked about using the skill set of members that are already within their church. So if you’re a part of a church, there’s probably going to be nurses there, there might be physical therapists, occupational therapists. There are so many different people that are already members of your church with skills that can be utilized in caring for those with varying needs.

… 

Michaela Holsteen: (36:10)
Thank you for listening to the Indispensable Podcast. For more information about Cri du Chat Syndrome, check out FivePMinus.org.

By / Apr 19

Ten years ago, we sat in child-sized chairs in a storage room/office at the elementary school across the street from where we lived in Pennsylvania and heard these words from a psychologist, “We believe your son has autism.” We had walked in that morning knowing something was different about James, and we walked out with a diagnosis, a binder of resources, and the promise someone would call with our next steps. 

I wasn’t new to the world of disability—my big sister has Down syndrome. But my experiences as a sibling and my experiences as a mom were different. Honestly, everything was different after that day. How we spent our time was different. We now had therapy appointments to go to and books to read. How we spent our money was different as we paid for behavioral therapy and occupational therapy. Our relationships with friends changed, as their kids grew and matured through stages James wouldn’t reach in the same way. Our relationships with family members changed, requiring them to adjust their plans around his needs. My plans to homeschool James changed as his preschool teacher held his hand and walked him into the big elementary school when he was just three. 

Changes to our church 

One more thing had to change—the church my husband pastored. Even though I had grown up in a church that welcomed my family and many other special needs families in our small town in Oklahoma, making accommodations and having a culture of inclusion, it hadn’t occurred to me that our church at the time of James’s diagnosis wasn’t ready to welcome special needs families. I looked around and didn’t see kids or teens on the autism spectrum, with Down syndrome, cerebral palsy, or any other disability. In most school districts, 13% of their student population is in special education. But that number wasn’t reflected at our church. 

In the parable of the Great Banquet in Luke 14, we hear Jesus speak of another time a portion of the community was excluded. The master of the house invited many friends and neighbors to his banquet, but they had excuses about why they couldn’t come. So he instructed his servant to “‘bring in here the poor, maimed, blind, and lame.’ ‘Master,’ the servant said, ‘what you ordered has been done, and there’s still room’” (vv. 21b-22, CSB). 

The master may have looked around his home, his table, and noticed who was missing, much like I did when I looked around our sanctuary the Sunday after James’ diagnosis. Kids like James were missing. Adults like my sister were missing. And our mission was clear—invite them in, and make them welcome. Then, we’ll experience the truth of what the servant told his master—when we make room for those who need accommodations, those who are often neglected, ignored, or ostracized, we realize there is room for everyone. When James pulls up a seat at the table and joins them at the banquet—when they actually see him—the entire church culture can change in miraculous ways. 

When our church sees James, they see the image of God in him, and they learn to see the image of God in everyone they meet. We once had an older church member tell us, “I was at the grocery store and saw a boy flapping like I’ve seen James do, and I knew why!” They learn, like the disciples did in John 9, that disabilities aren’t the result of sin on the part of the parents or the person with a disability. Jesus said, “This came about so that God’s works might be displayed in him” (v. 3b). They see the work of God through the life of James, the life of every member that makes up our church body, and the life of every person they meet in our community and beyond.

When our church sees James participate in corporate worship time and group Bible study because of the accommodations we’ve made for him, they make room for other children and teens with autism, with sensory processing disorder, and with obsessive-compulsive disorder. And as they meet his needs—as they make the gospel accessible to him—they know they can meet the needs of the 6-year-old with ADHD, the 9-year-old with visual impairment, the 15-year-old with Down syndrome, the 32-year-old with social anxiety, and the 73-year-old with dementia. 

When our church sees James use his gifts to build up the body, they know they are needed and valued too. They see the truth in 1 Corinthians 12:4-6 and step into their place of service, “Now there are different gifts, but the same Spirit. There are different ministries, but the same Lord. And there are different activities, but the same God works all of them in each person.” They know it isn’t just the pastor on the stage or the teachers in the classrooms who are equipped to serve, but that everyone has a role. 

And when our church takes these steps, they are able to see themselves more clearly. They don’t have to say they are doing fine Sunday after Sunday, because they see that perfection isn’t a prerequisite for belonging in our church family. They see strength, perseverance, and faith lived out right in front of them, and they ask God to produce those qualities in themselves as well. They see their need for the good news of the gospel each and every day.

I’m so thankful for how our church in Pennsylvania responded to James’ needs after his diagnosis. I’m thankful for how our church here in Texas welcomed him and our family a few years ago when my husband became the pastor, and overnight they had to build a special needs ministry. I’m thankful for the churches I communicate with each week in my role as the special needs ministry consultant for the Southern Baptist of Texas Convention. And I’m praying for the day that people with disabilities have a seat at the banquet table in every church in our world and that their absence is noticed and missed. Because when my church sees James and your church sees members with disabilities, we reflect God’s purpose for the church and the beauty of heaven.     

By / Dec 8

I didn’t know about Advent growing up. We had an Advent calendar—a blue cardboard illustration of Bethlehem with punch-out doors that revealed mini Bible verses—that my sister and I dutifully unpacked every year and remembered to open in fits and spurts. I heard the term in church from time to time during December and ultimately came away with the idea that “Advent” was just a grown-up word for “Christmas season.”

But Advent is not the same as the Christmas season; at least, not by default. A person can do Christmas-y activities every day without observing Advent. But participating in Advent inevitably leads to a celebration of Christmas.

The word “advent” simply means the beginning of something important or the arrival of someone important. In the case of Christmas, it means both. In the four weeks leading up to Christmas, we think about, look forward to, and finally celebrate the advent of God’s incarnation—his showing up on Earth as a human. That’s a very big deal, and it is very hard to understand. Christ’s coming was anticipated for a long, long time, and it foreshadows another, final advent of Christ that hasn’t happened yet. It’s a lot to think about. No wonder Advent is so long.

Part of what I love so much about Advent is that it doesn’t carry the same expectations that Christmas sometimes does. There is no pressure to be cheerful, no need to get everything (or anything) just right. Advent is about waiting. It is about struggling with weighty thoughts and sitting with the reality that things aren’t as they were meant to be. It’s about accepting all over again that we need saving.

Yearning for Advent 

It wasn’t until I was a new mother—new not only to motherhood but to the world of rare genetic disease and medical fragility and disability—that I found myself yearning for an Advent practice. 

My son’s life started with a long stay in the NICU. Then a feeding tube. Then seizures. Then a diagnosis that told us nothing certain other than that things would be difficult. By that Christmas, I had been living in pure survival mode for months, barely functioning during some of that time. More than any other time in my life, I felt myself deeply wrestling with the thought, This is not how it’s supposed to be. And in response, I felt my soul cry, Come, Lord Jesus. Advent resonated with me that year in a way it couldn’t have before, and I wanted to participate in it meaningfully.

Advent is about waiting. It is about struggling with weighty thoughts and sitting with the reality that things aren’t as they were meant to be. It’s about accepting all over again that we need saving.

The sensible thing would have been to choose a simple practice, perhaps a daily reading to start with. But I craved something hands-on. My life was so messy and up in the air that it felt important to me to make something concrete and beautiful.  So, together with a couple of friends, I hatched plans and made craft store runs and worked and worked and worked. What I ended up with was a hand-crafted Advent calendar consisting of a garland of hand-sewn felt envelopes, each embroidered with the number of the day. I selected my own progression of Scripture, wrote each out by hand on fancy paper, cut it with fancy edges, slipped it inside the envelope, and fastened the hand-sewn button to seal it up like a present. 

My family did use that calendar for years, but it was the making of it that impacted me most deeply. It was unnecessary and over the top and felt desperately important. Every step of the process echoed the wonder of Christ’s birth back to me in the midst of some of my darkest hours. Christ’s coming is an affirmation that our physical world matters to God. Therefore, what happens in it matters. And, therefore, my suffering matters. Simultaneously, his coming is a reminder that our physical world isn’t everything. It isn’t the end. In a way I didn’t fully grasp at the time, making the calendar was stepping into those truths. With my hands and my time, I was crying out, I need You so much more than I ever knew. I need to be reminded of the promise of beauty and wholeness to come.

Even though the crafting of that Advent calendar was so meaningful for me, it was not a sustainable tradition. I never took on a task of that scale for Advent again. But it did teach me the importance of doing something tangible during the season when I’m turning my mind to God’s physicality, to his humanity. 

A stick-with-it approach to Advent 

As my son got older and was joined by cousins, my sister and I wanted them to establish their own hands-on Advent practice. The trouble was that we couldn’t find resources we could stick with through the whole month. Some had too many words for little ears and some required too many steps or supplies for tired moms. So, we started experimenting with designing our own activities. Over time, our project evolved into Unexpected Gift, a storybook and activity book set that was published this year

Our goal for Unexpected Gift was to provide an all-in-one resource that would make the observance of Advent meaningful and accessible for a wide range of ages, abilities, interest levels, and life situations. It needed to be simple, hands-on, and gospel-centered. For several years, the development of the books was part of our own Advent practice, and we still use the completed materials every year.

In our home, we don’t have a regimented program for practicing Advent, but more of a small handful of (more-or-less) daily rhythms that quiet us down and focus our attention. These days, our Advent practice involves three main things:

  1. Slow down. After Thanksgiving, we start to wind down for the year. We shed commitments as the month of December goes on, stopping therapy sessions, ending school early, backing away from regular social commitments. We slow down and make space wherever possible. The point of Advent is to prepare him room in your heart and mind and life, and that can be tricky if you’re cramming too many extra things, no matter how fun or good, into already full days.
  2. Do one day from Unexpected Gift. I help my son make the day’s craft (we almost always do the most basic version), we read one page and one verse (from the ornament). Sometimes we’ll talk or pray about it a little bit. It’s just right for us.
  3. Shut down early. In the evenings, we stop a few minutes early. We turn off our screens, turn down the lights, and sing one Christmas carol together. Everyone takes turns choosing and sometimes we try to learn more verses than we knew the year before. Most nights, this little ritual turns into extra minutes of closeness and quiet. Ten easy minutes well spent.

If ever there was a year to establish an Advent practice, this is it. We are all carrying more fear, more sadness, and maybe more anger into this holiday season than we have in a long time. I encourage you to choose something simple, tangible, and gospel-centered: a touchstone for the coming December days. Let it remind you that your life on those days matters and that Jesus came to us to give you the promise of beauty and wholeness.

By / Oct 15

Anytime I am asked to share our story, I am equal parts excited and nervous. Our story is not a typical one, thought it started out very charmed.  We easily could have been the stock photo for a new picture frame. I married my college sweetheart, a camp friend from high school. We both graduated from college, began our careers, got married, and moved to Dallas. We had a plan, and we were confident that our plan was surely God’s plan.  

When “typical” no longer defined our family 

After a few years of marriage, we started our family. We had a beautiful, healthy, strong-willed daughter. A couple of years after that, we had a handsome, healthy, and athletic boy. We continued moving forward with our plans and working hard at worldly success. In the fall of 2008, everything changed. I was pregnant with our third child. My pregnancy was normal, and there was nothing to be concerned about—until I went into labor five weeks early. From that moment on, our family has been anything but “typical.”  

Libby was born, and we instantly knew that something was not right. Multiple doctors and nurses came in and out, having very hushed conversations. They took her out and did not bring her back. She was taken to the NICU with a number of concerns, the most significant being respiratory and cardiac. We were told that she had a very serious heart defect and would require surgery. She was struggling to transition from the womb to the world and was requiring assistance to breathe, eat, and rest. She had open heart surgery at 10 weeks old, and it was shortly after that surgery that we were told that Libby had a very rare chromosomal abnormality called Trisomy 16P. 

We were told that the chances of her celebrating a second birthday were highly unlikely. We heard many things from doctors in the days following the diagnosis. We were told to “take her home and love her while you have her.” We were told “if you had not already repaired her heart, we would tell you not to bother—she won’t live long enough for the surgery to be worth it.” We were told to carefully consider our future family planning. Our heads and hearts were spinning. 

One of the most encouraging things we heard was, “Who knows?” It was a comfort and relief when a very knowledgeable physician would admit that maybe he or she did not know what Libby’s future looked like. It was in these moments that I could feel the Lord nudging me and saying, “I know.”  

Libby is now 12 years old. She is healthy and happy and truly a miracle from God. Life with Libby has been anything but easy. We have felt very much like navigators of a foreign territory. We have not found another family or even medical professional that has experience with Trisomy 16P. When Libby was diagnosed, there were 30 reported cases. Libby does not walk or talk; she has the cognitive ability of a nine-month-old baby. 

Despite the difficulty and stress, we decided to continue to grow our family. We met with doctors and specialists. We were told that it was a scientific impossibility that we would have another child with Trisomy 16P. In October of 2011, after a very typical pregnancy, we welcomed Hannah Jane into our family. Hannah’s heart was healthy, she was not premature, she was breathing on her own; however, we both knew that something was atypical. We were told that she also has Trisomy 16P. We were shocked and devastated all over again. How could this be? 

How our family experiences God’s faithfulness 

Although the diagnosis was the same and the girls are technically genetic twins on paper, our feelings were different the second time. I never want to sugarcoat it—it was hard. We cried many tears. We questioned God’s plan. We felt angry. At the same time, we felt a peace and a calling. We have had hundreds of doctor appointments, surgeries, and hospitalizations. We have had such extreme mountain-top experiences, like when Hannah walked over 700 steps in her gait trainer a few weeks ago at school. We have also had dark, scary experiences in the valley. We have walked through nights in the ICU where we didn’t know if our girl would live. We have sat through surgeries that were long and life-threatening. We have flown in care flight helicopters and been transported by ambulances more times than I can count.  

Here is what I have learned: God is God over the peaks and valleys. God was and is faithful every moment in between. He has been faithful to provide through his Word, his presence, and his people. I am grateful that God’s Word addresses fears and pain, anger and sadness. I am thankful that God does not turn away from our emotions. And I am grateful he continually speaks through his Word and his people. 

For anyone walking a similar path, I encourage you to find a Bible-believing, Gospel-preaching church that will minister to you and your family. We have been been a part of three different churches—all who have loved us well and cared for our girls. 

I would also encourage you to find parachurch ministries that minister to you and your entire family. Our very favorite event every year is attending Family Camp with Joni and Friends Texas. Joni Earekson Tada is a hero of ours and has established an unbelievably life-giving ministry that cares for families with disabilities. 

And most importantly, I would encourage you to press in to God’s Word and discover what he says about suffering. John 16:33 has become my life verse, “I have said these things to you that, in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world” (ESV).

I fought the reality that our life is anything but typical for a while, but now I embrace the calling and blessing that we have been given. Our girls have taught us so much about God—his faithfulness, provision, and love for us. Our girls do not speak, but they communicate the gospel every single day. Our plan did not look like God’s plan. In 2013, his plan surprised us with welcoming our fifth child into our family. Campbell Grace is a healthy, active, extremely talkative seven-year-old now. His grace abounds, and his plan is always better—for his glory and our good. 

By / Sep 30

When my son James was born in 2007, I searched Scriptures for just the right verse to pray over his life. As I would rock and feed him at 2 a.m., I wanted to whisper a verse that he would remember as he grew—one that would be true for him when he was two, 12, and 22. After reading and praying, I finally picked a verse.

“And Jesus increased in wisdom and in stature and in favor with God and man” (Luke 2:52 ESV). 

That is exactly what I wanted for him—to grow smarter and stronger, and for God and others to show him favor. In those early days, I couldn’t have predicted how important that verse would be for his life. 

In 2010, he was diagnosed with autism. It seemed as if my prayer wasn’t being answered. He wasn’t growing smarter or stronger. He was losing communication skills, and he was well below average for weight and height. Others weren’t showing him favor either. He was excluded from friends’ birthday parties and kept to himself around his peers. And, honestly, I wasn’t sure that God was showing us favor either. 

We struggled with our new role as special-needs parents—juggling doctors, therapies, and restrictive diets. We had to learn a new language with acronyms like ASD (autism spectrum disorder), SPD (sensory processing disorder), and GF/CF (gluten-free / casein-free). I continued to pray, “God, I’m begging you to help him to grow smarter and stronger. Show him favor. Cause others to include him, be patient with him, and love him.” I prayed this night after night, again and again.

Ten years later, I can see my prayer being answered. He is learning. He is growing. Overall people are patient with him and kind. God has had favor on him and our family. And praying that verse over James for all these years has changed me as well. It has reminded me how much God loves James and how he has ordained this life for our good and for our growth in godliness. 

The importance of prayer 

Praying for and with our children with special needs is incredibly important. We won’t know this side of heaven what a difference our prayers have made in their lives, but I do know that praying this verse over James has brought me hope, even on our hardest days. 

You may want to pick one verse to pray over and over again as I did back in 2007. Or you may find many verses that speak to your situation and pray those over your son or daughter. If your child is able, you can include them in the prayer time. My son James has limited verbal ability, but he does pray with me each evening, and I know his prayers bring God joy. 

Here are some verses you may want to use to pray for your child today:

  • “For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well” (Ps. 139:13–14).
  • “And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ” (Phil. 1:6).
  • “And so, from the day we heard, we have not ceased to pray for you, asking that you may be filled with the knowledge of his will in all spiritual wisdom and understanding, so as to walk in a manner worthy of the Lord, fully pleasing to him: bearing fruit in every good work and increasing in the knowledge of God” (Col. 1:9–10).
  • “To this end we always pray for you, that our God may make you worthy of his calling and may fulfill every resolve for good and every work of faith by his power,  so that the name of our Lord Jesus may be glorified in you, and you in him, according to the grace of our God and the Lord Jesus Christ” (2 Thess. 1:11)

I hope the practice of praying Scripture for your children with special needs encourages and strengthens you as it has done for me. God’s Word is living and active (Heb. 4:12), and his power has everything we need for life and godliness (1 Peter 1:3). We can invite the Holy Spirit to work in us and through us as we love our children by praying for them. Join me today in lifting up our children to their Father who created them with a purpose and who loves them.

By / Nov 3

Kelly Rosati moderates a panel on Adoption and Foster Care, Special Needs, and Mental Health with Lynnette Ezell, Herbie Newell, Palmer Williams, and Zack Pruitt at the 2018 ERLC National Conference. 

By / Jan 23
By / Oct 18

Joel Dillon discusses ministering to special needs families.