Leisa Williams is a special needs mother with a passion for the wellbeing of families like hers, who lovingly care for their children with disabilities. When doctors predicted that her son, Justin, diagnosed with autism, would never speak or progress beyond the capacity of a toddler, Leisa and her family were thrown into turmoil. With hopes sidelined, toxic relational patterns forming, and endless unforeseen responsibilities and struggles adding pressure on all sides, Leisa and her family eventually fell to their knees before the Lord. Leisa joins the podcast to talk about her experience with disability, hard-fought faith, and hope that comes from trusting God and remaining connected to the body of Christ, especially when life gets hard.
For more than two decades Leisa Williams has cared for a son with a disability. She knows firsthand the grief, hopelessness, family divisions, and weariness that often plague families living with disability. That’s why she wrote her book, Hope Wins: Overcoming Feelings of Hopelessness in Special Needs Families.
Leisa joins the podcast to talk about the challenges that come with disability and the importance of turning to God and Christian community, even when it’s tempting to withdraw. Her insights shed light on many pain points that can come with disability and offer strategies for families and communities to find connection and hope in the midst of difficulties.
Get your copy of Leisa’s book: Hope Wins: Overcoming Feelings of Hopelessness in Special Needs Families
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Joni and Friends envisions a world where every person with a disability finds hope, dignity, and their place in the body of Christ. Founded by international disability advocate Joni Eareckson Tada, we provide Christ-centered care through Joni's House, Wheels for the World, and Retreats and Getaways, and offer disability ministry training and higher education through the Christian Institute on Disability.
Crystal Keating:
I’m Crystal Keating and you’re listening to the Joni and Friends Ministry Podcast. Each week we’re bringing you encouraging conversations about finding hope through hardship… and sharing practical ways that you can include people with disability in your church and community.
Lisa Williams is a special needs mother who has a passion for the well-being of families like hers, who lovingly care for their children impacted by disability. When doctors predicted her son would never speak or progress beyond the capacity of a toddler, her life was thrown into turmoil.
Suddenly her own hopes and dreams were put on hold, sidelined by a constant stream of appointments, decisions, and unforeseen responsibilities. Today, she's joining us to share her life experiences and hard-fought-for faith gained while raising a son who is now 20, and he's serving as an intern at a church where he desires to be a pastor.
Welcome to the podcast, Leisa.
Leisa Williams:
Oh, it's really great to be here. Thanks for having me on.
Crystal Keating:
I'm so glad to have you on all the way from Australia. Where are you located in Australia?
Leisa Williams:
I live in Canberra actually, which is the capital city. We call it the Bush capital in Australia. So, it's a really great city to live in.
It's like living in a city in the Bush and my son is actually living now in Lake Macquarie, which is five hours away from Canberra. And that's been a real journey, which I'm looking forward to sharing with you on this podcast.
Crystal Keating:
Well, I can't wait to hear more and we're so thankful that you're joining us from so far away. You know, when you first received the diagnosis that your son had some developmental delays, it sounds like everything changed for you. So, Leisa would you share a bit about those early days and your experience as a new mom whose world was rapidly changing?
Leisa Williams:
Yeah, it felt like I had been sidelined, to be honest. I was someone who was very performance and achievement orientated. I grew up as a musician. I love music and I had really developed my whole life around my teaching of music and my career. And I'm raising my other two children and obviously raising my three children and I had them all on a track really to grow and develop in education and to perform like I did. And when Justin was diagnosed with autism, it really just stopped me in my tracks because all of a sudden, I wasn't living my life that I thought I was going to be living. I didn't see that my family and my children were going to be on the same path that I thought that they would be on because it impacted absolutely everyone in our family.
And when we were actually told that Justin might never speak or progress beyond the capacity of a toddler, I really did feel like all my hopes and dreams were put on hold. Because all of a sudden, these appointments and decisions and unforeseen responsibilities sidelined me, and it was a struggle to, to accept that and to come to terms with that and realize that I could not keep living my life the way I had thought it would be.
Crystal Keating:
Oh, yeah. And we've heard from so many moms and dads who feel the same way. They have hopes and dreams for their children and how their family will be. And that all stopped for you. And you shared that the early years of raising your son with special needs became really all-consuming after that diagnosis and that your family developed toxic patterns of relating to one another. So, when did you begin to realize that you were experiencing fatigue that was deeply affecting the whole family? And I, I'm also wondering even just that hopelessness of feeling such a loss at some of the dreams and desires that you had for the future.
Leisa Williams:
Yeah, I, I talk about in my book, cause I've written a book called Hope Wins: Overcoming Feelings of Hopelessness in Special Needs Families.
I, I think there was a real sense of hopelessness because I couldn't do what I thought I would be able to do. But not only that, those dreams that I had for my child and even my other children, all of a sudden seemed to be put on hold. And it was really hard because I had to really deal with grief and a transition into a new life.
And it felt like someone had died. It was a grief that finding out that Justin was developmentally delayed, just felt like a death, but only he was alive. And I'm not saying that to put him down or minimize anything. But I did feel like my world had slowed down so much and even stopped for a moment and it can be hard because it's like, well, I'm just talking about me, but what about him?
What about everybody else? But it didn't change the fact that that's how I did feel and the reality for me and my husband was that we still needed to keep going. We still needed to pay the bills. We still needed to do the mundane chores. And in that somewhere from this performance and this striving and this career that I was wanting to have, it was like, the music kind of died in me for a season.
And I put my hopes and dreams on hold that any mother would have not only for her child but for myself and even my other children because I didn't know how to deal with that grief and to come to that point of acceptance, that he might never speak or walk or play like other children that every time, you know, I'd look forward to celebrating a birthday would come that reminder that he was more delayed and different milestones hadn't been reached.
And so, in those early days, I wanted to withdraw. And at first, I felt like friends were including us in everything. But over time I felt like the invitations to parties and birthdays and social events and being the mom on the side of a sporting team, those opportunities just weren't there. And I realized I was nursing my grief and in my grief that I really started to push other people away.
I didn't even find it easy to wanna connect with people who had the same struggles as I had, because deep down it was like me saying, well, I'm going to become just like you. And that was a really, really hard place to be because I isolated myself I think, as I was struggling to come to that point of acceptance of this is what our family was dealing with and was Justin's reality.
And it did become then all-consuming. And so, our family, when I talk about toxic patterns of relationship, I guess we became self-focused on what our needs were. So, my husband and I struggling with resentment about wanting to live a certain life, but not being able to live the way we wanted to live feeling easy to blame the person who had the most need in the family. But the reality is we all had needs. We all had problems. It's just that these issues in Justin's life were surfacing issues in my life and in my husband's life where we weren't as healed and whole as we could be. And it really brought us to our knees.
The siblings had their own grief to transition with and accept and their own way of expressing that and sort frustration and anger. And I think for a season, we are almost like turning on each other, not knowing how to relate. And it was really in that when I say pit of going down and being stripped that we all started to turn to the Lord and just say, we can't do this. We need help. We need you, Jesus. And that began a journey of reaching out for healing and coming to a point of acceptance and realizing that God was with us in, in these circumstances that felt incredibly hopeless.
Crystal Keating:
Wow. Yeah, God has such different ways of drawing us to himself, ways that we would probably never desire were we in control of it. And he has a way of showing us what we really need, which is him and all of these realizations put you on this path as you call it to really follow the Lord but simplify your life. So, what did that look like for your family?
Leisa Williams:
Well, back in those days, we were involved in a lot of things in the community. I was running playgroup. I was in the worship team. My husband was an elder in our church. We were doing, doing, doing, and we found, as I've mentioned, a lot of value worth in what we did. And so, simplifying was actually coming to that point of acceptance of starting to strip things out and being comfortable with being at home together as a family.
And I say that really sensitively because I know that sometimes in the special needs families being at home is really tough because it's like there can be, be a hotbed of emotions and caring and so many things to do. But we needed to simplify by not being out three or four nights a week, being out all weekend.
We needed to choose strategically what we did do and what we didn't do and who we connected with and except that some of those friendships would go by the way that when you're not doing, and you're not seen, it brings another wave of grief because all of a sudden you don't feel like you belong.
And just because we weren't doing didn't make us any less valuable and that we weren't lazy and not feeling guilty like in church circles and coming to that point and simplifying also meant just going with less. And if I needed to continue to work part-time, which I did for many, many years, that was okay.
But working was also something that helped me keep focused and connected as well. So, I didn't quit absolutely everything, but really had to seek God and ask him, what should we be doing or not doing? And how can we learn to rest in him as a family, even though our relationships for that season were quite strained and to get the help?
Crystal Keating:
Well, that's so good where we've talked to a couple people on our podcast, even this season where the emphasis moves from being valuable because you can do to recognizing value because you are before God.
And that's a beautiful but humbling place to be. But I think that's really where we experience that nearness of God and our true purpose. And how do we reflect God in this moment? How do we commune with him? How do we walk with him even if we can't do all those things at church, maybe that we used to? Well, you talk about even experiencing self-pity. So, what steps did you take to rise up from that very deep pit?
Leisa Williams:
Well, I have to really thank my husband for helping me a lot with this. My husband didn't fall into the self-pity as much as I did. He remained very connected to his hobbies and maintaining a sense of doing a couple of things for himself, which was part of his self-care so that he felt connected to others and to the gifts that God had given him. He loves night sky photography and metal detecting, and just being out in the Bush.
And he used to do that, and I used to struggle and feel resentful almost of him. With that, because I felt like I've got so many appointments in my life, every time I have a spare moment and I'm not working, I have to go to an appointment or I have to make a phone call or I have to apply for funding, and all my free time is soaked up. And he used to be like, Leisa, just let it go. You can do something for yourself. And I didn't really know how to do that. So, he encouraged me to go on a Christian retreat actually and take some time out one week a month to be able to just spend time with God, connect with other Christians, have a place where people could pray for me, and just even work on my own inner healing on this journey, but it was also in nature.
So, I could connect with nature. I could do some art. I could do some creativity, and that actually helped me to deal with my self-pity that was starting to become destructive, and woe is me. They really encouraged me to let go of the what if, the if only, to not just be going back and thinking about what if I hadn't have had Justin immunized or what if I'd picked up the signs earlier, or if only Justin could be X, Y, and Z.
And to take my thinking out of those destructive thought patterns and to start giving them to God and saying God, what questions do I keep asking that keep me stuck in self-pity. How can I rephrase my question so that I actually have hope in these circumstances? And it was out of that, that I was encouraged to dream again and to begin to think, well, I might not be able to go down and you know, be in the worship team cause I can't do that logistically. But I can listen to worship music in the car. I might not have time to be at a particular group or do the things I used to do, but I can actually listen to a podcast, or I can have a coffee with a friend or invite someone over to my house. Or I can work part-time and enjoy the amount of hours that I have teaching music.
And focusing on what I can do and not what I can't do in my simplified life and coming to peace with that. And also having others, like my husband, keeping me accountable to self-pity because there's a fine line, I think, between empathy and sympathy and then going into self-pity, like I did need empathy and I did need sympathy.
But too much of it in the end when this is my reality, you know, ongoing meant it was only feeding self-pity. And so, people holding me accountable and encouraging me to dream and to focus on what I can do. That was really, really helpful.
Crystal Keating:
Sounds like it. Just the way and the impact that people around us can really have on us, especially when you talked about feeling like you wanted to withdraw. You didn't even wanna identify with other mothers who had children with special needs, to really seeing, wow, we need one another, and we need the Lord first and foremost.
What a blessing your husband has been to you, and I'm sure you to him as well, that you can partner together. So, let's talk about managing your own needs. How do you do that? How did you learn to manage your own needs and the needs of the other members of your family? Justin was not your only child, right?
Leisa Williams:
No, he's the youngest of three. He's 21 years old now. So, we've been on quite a journey with him and it's an amazing story with what God's been doing in his life, right, since his early beginnings. But managing my own needs were probably not very good at the beginning, but one thing I did do was try to prioritize my health.
The Lord just really talked to me about keeping myself as fit and healthy as possible. And so, I think my husband and I working in partnership was very key. It's really probably significant to acknowledge that somewhere up to 80, 90% of marriages with children with autism do not make it. They end in divorce because the stress is so heavy.
They actually will put people in our situation, almost like having the stress levels of those who are in the defense force, in the SAS. Like it's very full-on because you never can switch off. Wow. Some people, I know families who women up at all night with their kids who just don't sleep, and we had experienced that as well, like go to bed at night and they're skimming and humming in the room next door and slapping and things like that. The pressure that can come on a marriage and in the family is very intense. So, we realized if we didn't start to pull together and work together, we weren't going to make it.
And that's where it fed into toxicity because it's like, well, we can keep turning on each other, blaming each other, cracking under pressure or we can get on our knees before Jesus and be the family that prays together - stays together, and seek him in everything and trust Jesus to help us make a way when it honestly feels like this is no way.
And I cannot tell you how many times it just has felt there's been no way. But what Jesus has done with my husband and I is learning to be kind to each other. And so instead of me resenting my husband when he'd like, wanna go fishing for a weekend or be taking photos of the stars or, you know, midnight or whatever, because we were awake, cause our son was awake.
I started to say yes. Ian used to say, well, you can go away for a weekend, and I'd be like, no, I can't. I can't leave you with the kids. You won't cope. You know, I was very faithless and, and then I thought, well, actually I can. And so, I did do the weekend retreats, but then I would go for a walk of an evening.
Like most nights he would just give me half an hour or, or have an hour where Ian would be with the kids, and I would just go for my evening walk. I love the Curves gym and so then I just started going to Curves and saying, well, if I go to go three times a week and do my 30-minute workout, good, that is for me time.
And as we started to work together and release each other to do things, I had a friend at one point, just turn up with the whole of the scrapbooking and she could see I was in a really low point and she for about two years would come over with her arms, filled up with scrapbooking and photos and craft things.
And I wasn't even crafty, and she would just do scrapbooking with me. And those things were all part of, I guess, my self-care and starting to feel whole again, and looking at what my own needs were so that I wasn't completely operating out of an empty cup.
Crystal Keating:
Yeah, that's so good. How do you help others to find that same I wanna say permission, but sense of release to care for their own needs? I think there is a sense among Christians as like, we need to die to self and it's not about self and we need to give of self. So, where did you find that freedom to say actually caring for myself in these ways is giving me more energy to care for my family? Like how did you come to that place?
Leisa Williams:
Well, that was really through going on my Christian retreat through an organization called LL Ministries. They really encouraged me to connect to God in a way that I had never connected with my heavenly father before. They just said to me, Lisa it's not about what you do. It's about who you are in Christ. And probably that depth of self in a way when I had to become someone that I never realized I was because I realized so much of my identity had been caught up in what I did.
And when I had Justin in such a way, it's such a blessing because he enabled me to connect to my heavenly father like I'd never done before, because I had to go and say, well, you know what, if everybody else I feel judged by because I'm not doing anymore and I can't use my gifts and my talents the way I used to. But it doesn't matter to my heavenly father. He absolutely loves and adores me as his precious daughter.
And he sees me when nobody else sees me. He wants to connect with me, whether it's through craft or drawing or playing an instrument, songwriting, doing card making or scrapbooking, or with my husband when he is out. And so instead of seeing my husband as like, you are just checking out or you're lazy, I'm like he's out there with creator God taking photos of the stars and being filled up and refreshed, which means he can come back into the family and give more.
Really, it was just coming to that deep point of no matter what I think anyone else might be thinking. And it was interesting after I wrote my book, one of my reviewers said to me, Leisa, you feel judged and it's like, you're justifying yourself all the time, always looking for that approval, like, because I'm not doing anymore because I feel like my simplified life has suddenly cut me down. I'm not on as many rosters if any, sometimes at church, because I think we can't be. But it doesn't mean I don't love God anymore. It doesn't mean that I'm not in the body of Christ, but then I would just say well Lord, what can I do to serve you? And what I realized was that as we're crunching this out in our family, God's actually imaging himself through us because that's what family, that's what marriage is.
It's about imaging God through relationship so that we have Christ in us, and he just started to just give a peace and now I do serve God and do things. But it's come out of who I am, not me needing approval or feeling that I need other people to approve of me. Does that kind of make sense?
Crystal Keating:
Mm-hmm yeah. And there's a lot of freedom in that and a lot of joy in that. And other people can sense that. And that's where we really proclaim the excellencies of God. Right?
Leisa Williams:
Yes.
Crystal Keating:
That's beautiful.
Leisa Williams:
Yeah. And other people have seen, other women now, they've seen what's happening in our family and they do the same and they can see it works.
And it's not that we have all these people who are now no longer serving in the body of Christ, but the services coming out of a different place. Right. Right. It's out of a place of rest.
Crystal Keating:
Thank you for listening to the Joni and Friends Ministry Podcast. If you’ve been inspired, would you leave a 5-star review? And don’t forget to subscribe! You can also visit joniandfriends.org/podcast to send me a message. I’m Crystal Keating and thank you for joining me for the Joni and Friends Ministry Podcast.
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