Special Needs Families

October 16, 2017 Length: 23:59

Fr Alex interviews Presvytera Melanie DiStefano on the rewards and challenges of raising a special needs child. She offers observations on how parishes can welcome families with special needs and advice on how families can feel more at ease in community life.

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Fr. Alexander Goussetis: Welcome to Family Matters. My name is Fr. Alex Goussetis, and our topic today is special needs parenting. We are joined by Presvytera Melanie DiStefano. Presv. Melanie received a Master of Divinity degree from Holy Cross School of Theology in 2003. She and her husband, Fr. Joseph, live in Campbell, Ohio, with their only son, Michael. Michael has a dual diagnosis of Down syndrome and autism. Father and Presvytera serve St. Nicholas Greek Orthodox Church in Youngstown, Ohio. Presvytera also teaches at Holy Trinity Orthodox Christian Academy in Warren, Ohio. Welcome, Presvytera.

Presvytera Melanie DiStefano: Thank you, Father.

Fr. Alex: We read in Scripture that we are born in the image of God. How do you see that revealed in a special needs child?

Presv. Melanie: Well, I think I ponder how we are created in the image of God a lot in general as human beings, and sometimes I wonder if we’re at all in his image—maybe I should speak more for myself—but I can only speak about how I see holiness in my own child. I compare his life to that of Christ, because he is the supreme icon of God the Father, revealing to us who God is.

So I guess there are a few things that come to mind. One is truth and authenticity. Michael has no guile. He has no mechanism that he engages that allows him to calculate any kind of meanness. I’m not saying he’s without sin, because he can be naughty just like any child, but he is not guilty of the calculated meanness that many of us are who have more intelligence, as my confessor once told me when I was struggling with Michael lashing out at us and hurting himself and hurting us. It’s true. Michael doesn’t… He just reacts. If there’s pain, he reacts. So there’s an honesty about his life. He’s in the moment. He loves, he cries, he yells, but there’s no pretense; there’s no hypocrisy.

I think Christ, over and over again, when he came, talked about, “I’m telling you the truth. I’ve come to speak the truth.” That was his main purpose, and his words were to speak the truth and to display the truth. Michael reminds me of that so much.

I think also the holiness. The scriptural definition of “holy” means to be set apart for God’s special purpose. A special needs situation has definitely a special purpose in God’s plan. There are times that I don’t always understand it, I don’t realize, and I doubt that he has a special purpose, and I wonder what this is all about, why he suffers the way he does, why our family can’t have what I would perceive to be a fullness of life in that we’re limited to what we can do and where we can go and how often. But there’s a holiness there, and I do see Christ working through Michael in his relationships.

I see just by Michael smiling at people their heart melting. There are times that people at church will tell me that they’re going through a hard time and Michael will look at them and immediately they know that God is telling them that God is telling them everything’s going to be okay. I’m sitting there looking at him, thinking he’s misbehaving in church, and there’s someone behind us that is being fed through Michael’s eyes. So it’s amazing to me, it’s miraculous to me, how God does work through Michael. And he has no speech. Michael doesn’t speak at all. So his movements and his eye contact and his smile really are the avenues that God works through to speak to others.

I think also he’s humble. Christ humbled himself when he became human to such a degree, and we can’t even really, in our limited understanding—it can just blow your mind trying to understand how God could become incarnate and he condescended. Michael did not by choice; he was given this sort of—I guess it’s a gift—it’s a gift and it also doesn’t feel like a gift a lot of times, but it’s a gift in that his body is humbled. St. Paul talks about when we are weak, then God is strong within us. I think that weakness of body allows God to operate more fully as opposed to when, for example, I get caught up in my own gifts and think they’re my own and get arrogant about them. That doesn’t allow for God’s grace to shine through. That’s me trying to impose who I am—who I think I am—on someone or some situation. But with Michael, he just is and he’s simple, so God can work through him more fully.

Fr. Alex: So there’s a purity of heart. And when you say “guileless,” it reminds me of the exchange with Philip and Nathaniel and Jesus in the Gospel of John. That’s how he’s described: “There is no guile in him.” So there’s a certain purity and honesty in who Michael is and how we relate to him and how he relates to us.

Presv. Melanie: Exactly. There is a purity, and I’m sitting here looking at a picture of him as a baby, and he’s smiling. I don’t know how we got him to smile then, because he was not feeling well at that point in his life, but he was smiling so sweetly. He just shines. There’s this purity that comes through in his eyes and in his face. It’s just hard to describe.

Fr. Alex: When you say that he does not communicate with words, it does open up that whole other huge area in terms of how we relate through our actions, through our body language, through our eyes, and through our face. That’s just such an underappreciated, I think, at times, style of communicating, that you’re really dependent on in the way that you relate to Michael.

Presv. Melanie: Yes, the way you put it actually is helping me right now, because I’ve been thinking a lot about the struggle of not being able to communicate with Michael. We know that God, the Son, Christ, is called the Logos and the Word of God. I often wonder about that. Michael doesn’t have words, and communication is so vital to our existence, and it’s underappreciated and misused and overused. But that Word of God is a Person; it’s not just about his words: it’s about who he is. So that helps me even make the connection about who Michael is and how he communicates: maybe not with verbal words, but with other ways.

Fr. Alex: So what’s the most challenging aspect of raising a child with special needs, and, at the same time, the most rewarding?

Presv. Melanie: I think the challenges have varied throughout his life, because Michael has a lot of medical issues. There was a time in his early life—he was a preemie—he had to have heart surgery and kidney surgery and bladder surgery, and those challenges were so overwhelmingly stressful—I’m always fearful of his life. There’s the trauma of his being in the NICU for many months: it plays itself out whenever he gets sick. So those things are definitely among my biggest challenges.

I also think there is a little bit of a grief that comes along with your child’s life not playing out in the way you had hoped. I’ve been feeling a little sad lately, just thinking about some of the things he’s missing. Sometimes it happens when I visit with family members or friends who have children sometimes his age or even younger. Even though I’m not supposed to compare, I’m comparing and I’m thinking, “Oh my goodness, even toddlers are further advanced.” A lot of times children are afraid of Michael, and it’s painful and it hurts. I saw a post this morning about—it was from a special needs mom—how we grieve the loss of our child, even though they’re alive. So we have these hopes and dreams that we have for our children, and it’s “supposed” to play out a certain way in our mind, and when that doesn’t happen, you’re constantly going through a period of dying to what you had hoped for and then praying through that and being grateful for what you do have. So I think the challenge of that grief that comes in waves and unexpectedly sometimes, that is a very big challenge.

As far as I think some of the most beautiful things and blessings about having a child with special needs is that God has given me an insight into what it does mean to be human. What is at the gist and the core of our existence? It is love. I mean, I know that and we all are told that, but do we operate that way on a daily basis, when things get busy and crazy and worldly dynamics play into things? What Michael needs is love, and at his core what he expresses the most is love. So I think God also uses Michael to humble me and to change me. I think I’m sillier now than I ever was; I’m not as serious a person. I’ll do anything to make Michael laugh. I’ve just become a different person because of my child with special needs. I want to relate to him on his level. Whatever can help us connect, I go there. It’s not always easy, but I feel like God is helping me to change through that, because the love for my child overcomes my laziness or my fears.

Also I don’t have to worry about a lot of the things that parents with typically developing children worry about. I don’t fear for Michael’s salvation. I know that when he goes home to be with the Lord, there’s no question he will be in his arms. He will not be judged as harshly. I’m not saying he doesn’t have sin, but because he doesn’t have that psychological awareness of sin, I don’t fear for that. I don’t fear for what can happen to him in his teenage years, how the world can really drag teenagers down. I have none of those fears, so even though we might have somewhat of a load in different ways, that spiritual heaviness isn’t there. I don’t worry for his salvation.

Fr. Alex: So what role does the Church play in all of this? What I mean by that is: What can parishes do? What can the clergy and the laity do to help families with special needs children feel more at ease in church so that they might attend more regularly the services or just be more engaged in the life of the community?

Presv. Melanie: From my end, just the way I see it, I think there are some very practical things that would help. I think churches are becoming more adaptive to physical disabilities and handicaps, and just even wheelchair accessibility helps or changing rooms, or even a private room for larger children who need to be changed, and a cry room obviously helps. But when a child gets older and they don’t fit in those situations, I would just say I think the church community or congregation can help by being patient, not being scornful if the child is making noises. Smiling at the family always helps because, as a parent, you’re feeling some tension of “when do I take them out?” I know that’s normal for every parent, but also you don’t want people’s prayer to be interrupted. Sometimes it’s on an unexpected, loud cry—and what do you do? So I think just the way you respond without being overly pious and “we have to have zero noise in our congregation in order to pray”…

When I was at Holy Cross as a seminary student, not married—some of the seminarians were married and had children—I have to confess, at that point in my life I had zero tolerance for noise, and it bothered me if the children were making noise. I would think, “Oh my gosh, if I ever have children, this is how they’re going to be raised.” Of course, that’s the arrogance of not having the experience, but when you become a parent and you realize—that just turns things upside-down.

I also realize, though, during my Holy Cross years, I said, “Okay, God is everywhere and God is in every situation, and even if people are distracting me in prayer, that’s my issue; that’s not their problem.” Because God, if he asks us to pray without ceasing, that means it’s possible in any situation and in any circumstance. So I think people need to be less worried about what’s going around them and more worried about what’s going on inside their hearts, and realizing: Okay, this is part of my prayer. If a family is struggling in church and making a lot of noise—special needs or not—how can I help, or what can I hear in that? Maybe the words from the Gospel can come to mind, and I can hear Jesus saying, “Suffer the little children unto me, for of such is the kingdom of heaven.” Or maybe thinking of it as them singing in their praise instead of a distraction.

I think just being patient is a huge help, and also: don’t be afraid to look people in the eye. You don’t have to go overboard in offering help. If you think someone needs help, fine, but don’t be pretentious about it. I think it helps to just force yourself to not be afraid of looking into that situation, because then that gives a connection to the family members, and they don’t feel so different.

Fr. Alex: It allows all of us to be mutually supportive. There are things that you may benefit from the other families in the community; Michael’s presence or your family’s presence is also benefiting their journey in Christ and the Church. There’s such a mutuality here that is part of the body of Christ. It’s not just about me and God or my relationship with God. So what you’re describing really challenges all of our parish communities to be supportive, be open, and recognize that every single person in that community is in the image of God, and we’re all working together to work out our salvation, as St. Paul says.

Presv. Melanie: Beautifully said, Father. Exactly. And that brings to mind something that I think is a beautiful thing that some larger parishes are doing in that they are scheduling a Liturgy for families with special needs. That does give the opportunity for those who are maybe embarrassed to come to church or feel like it’s overwhelming because they feel like they have to attend to the needs of their child so much that it’s just exhausting to come. It helps lessen that load a little bit, so I do see the benefit and the beauty in that, but ideally, in my heart, I believe people should be coming to the Divine Liturgy no matter what their need, just for the reasons that you said: that we feed each other as the body of Christ, that we are doing the work of the people in our praise. Seeing somebody who has a very obvious disability can sometimes be hard for those of us who don’t like to look at our own weaknesses. I think it’s harder for us when we are in that frame of mind, but it’s also good for us and helps us to remember that we are all reliant on God.

Fr. Alex: It is. Sometimes in parish ministry we segment, maybe sometimes to our detriment, but there’s something to be said about the inter-generational nature of our worship in Orthodox communities, in the ways in which we come from different backgrounds. Certainly I understand the need for youth ministry and OCF ministry and senior citizens, but, as you’re saying, there’s even more benefit in having all of us together in worship, because that reflects the whole nature of the Church and where we are as communities.

Presv. Melanie: Exactly. The gospel reading that was read a few weeks ago, of Jesus healing the two blind men comes to mind. Here are these people with a disability, and they’re trying to get to Christ and the disciples are trying to send them away, trying to protect Christ in some way from the commotion or whatever it is. So the disciples, who are we, who are so-called typically developing people, sometimes don’t realize the greater need—but Jesus said, “No, bring them to me.” So we have to remember that when Christ was here on earth, he invited and included everyone. There was no exception to his table. It’s just a good reflection of what that should look like at the Mystical Supper.

Fr. Alex: In a presentation that I once heard you offer, you felt strongly about calling upon the saints for help, and I was wondering if you could somehow tie that into our conversation today in regard to parenting a special needs child, but just your thoughts about why that was such an important element of your spiritual life.

Presv. Melanie: Right. I think the saints have spoken to me a great deal in my journey in Christ, especially at times when I feel distant from him and feel unable to approach him. I know that should never be the case, but psychologically oftentimes we feel we’re too sinful or not worthy of his help. We have the saints who in some way are more relatable to us. They are human beings; they’re not also God, like he is. So many have struggled through the same passions, the same weaknesses, and calling upon them for their prayers because we know they have that sympathy in our struggle is a way for us to connect to Christ when, for whatever reason, we’re putting a wall up.

Not to mention that the mother of God is also our spiritual mother. She loves our children for us when we can’t, in the same way that Christ does. I turn to her for help in loving my child properly. At one time, you actually gave me the counsel of turning to Virgin Mary. It was when we had received the diagnosis of autism when Michael was three-and-a-half years old, and I remember speaking to you and just really struggling. You said, “Go to the Virgin Mary. Go to the Theotokos, and she will understand what you’re going through.” I said, “How could she understand what I’m feeling? She has a perfect Son.” And you said, “Yes, but I’m sure that she did not have in mind how his life would play out the way it did. She did not have in mind the suffering that he had to endure, and she had to accept God’s plan for his life.” That always stays with me in times of doubt or fear, that she can help me to endure and to trust that it is part of God’s plan. I don’t know what’s part of his plan in the suffering aspect of Michael; I don’t want to say I know everything about it, but at least to just trust that, in the end, God will sanctify this life and make it something that he can shine through.

Fr. Alex: And we’re blessed to have that cloud of witnesses supporting us and in modeling for us. We’ve been joined by Presvytera Melanie DiStefano, and our topic today has been special needs parenting and special needs families. Thanks for being with us today, Presvytera.

Presv. Melanie: Thank you for having me, Father.