Tag Archives: Special Needs

Hope for Families with a Child with Autism: Advice for Parents

A recent study identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder. (1) In the United States, most individuals are familiar with the disorder because of the high likelihood that they know someone with autism. The stress of any special needs diagnosis is difficult for a family, and those with autism have unique struggles. In order to identify resources available within our Catholic Church when faced with a diagnosis of autism, we can look to the words of our Holy Father Pope Francis:

When there is no human hope, there is that hope that carries us forward, humble, simple—but it gives a joy, at times a great joy, at times only of peace, but the security that hope does not disappoint: hope doesn’t disappoint (Morning Meditation, 3.17.16, emphasis added).

When I was told that my son was diagnosed with autism, I was the only adult in the room besides the doctor; my son and his two older sisters, ages 5 and 7, were there too. Our son was age three at the time, and his father was traveling out of town on business. I will never forget the whirlwind of thoughts, feelings, and sense of fear that day as I stood in the doctor’s office.

Now, twelve years later, I can look back at those days with the benefit of hindsight and more importantly, grace. Despite the many challenges, and at times heartbreaking pain, I cannot imagine life without my Joey. That fear has been replaced by hope.

I have learned several lessons since that day, and each day brings a new lesson in how to help him grow. Each day also brings new insight for me as a parent, including where I need my own personal and spiritual growth.

The wisdom in our communion of saints is a resource that every Catholic can rely on when working with a child who has special needs. Three themes from our Holy Father’s ministry, which he emphasizes in homilies and in his writing, suggest a three-pronged approach for families with a child on the autism spectrum. Let’s look at each one:

Progress Forward

Many times with a child with autism, it can seem like one step forward, two steps back. The challenge is to have a long-term perspective, recognizing that the small steps you are taking now to provide early intervention will have a future payoff. Because autism often accompanies co-morbidities like anxiety, it can be difficult to manage your own natural worry as a parent, as well as that of your child. Make sure that every so often you take time to review the progress your child has made, and to express your appreciation for all of his or her hard work. It is also important to pat yourself on the back from time to time, because being a parent of a child with autism can be difficult and lonely. It can help to find local support groups in your area so you can share resources and support.

Humility

Frequently, mothers think that they are the only one who can meet their child’s needs. While it is important to recognize the mother’s role, both father and mother have to acknowledge that they cannot meet their child’s needs alone. Humility shows us that we have to rely on others, whether that be hiring in-home therapists, seeking private grant funding or finding other ways to get the support that you need as a family to successfully support your child with his or her diagnosis.

Simplicity

Pope Francis is noted for his simplicity as well as his humility. Sometimes, when a child with autism has an IEP (Individualized Education Program), a treatment plan with multiple medications, therapies both inside and outside the home, as well as the need for structural home modifications, the needs are so great that it can be hard for families to prioritize what is most important. Simplicity means focusing on the most important needs of the child right now, in this moment, and enjoying the many wonderful moments of joy that the child brings. I have chronicled the many funny things that my son has said to me over the years, which have not only made me laugh out loud in the moment but are something I treasure years later as I re-read them.

For families who have a child on the autism spectrum, don’t give up! There is hope, and lessons learned over time and from others can make the journey easier.

(1) https://www.autismspeaks.org/what-autism/prevalence

About the author
Ann O’Keeffe Rodgers is a wife, mother and advocate for those with autism. She lives in Jacksonville, Florida, and is CEO of Hope Springs Florida, a vacation respite home designed for working-class families with a child with autism. Ann can be reached at rodgers_2244@hotmail.com.

A Special Family: Shaped by Down Syndrome, Grief and Grace

By the time our son Stephen turned seven, we were hoping to adopt another child. To our three birth children, Guy (8), Stephen (7), and Matthew (5), we had already added David (3) and Danny, whose Down syndrome no longer seemed remarkable. He had passed the ripe old age of one and, although he was developing more slowly than our four older boys, he was making strides at his own pace. Other than a small PDA (a patent ductus arteriosusa or small hole in his heart) and the croup which scared us all half to death, he was in good shape physically. (The hole eventually closed, and he outgrew the croup, thank God!) Except for the time I fed him too many carrots and turned his skin orange, we were doing a pretty good job of parenting. Danny had grown into being just another member of the family, and we felt that we could care for one more baby with special needs. Down syndrome did not seem like a disability. It was a challenge which early intervention services helped us to meet.

The following spring, we met John Francis in The New York Foundling Hospital. He was four months old. The first time I held him, he looked up at me and smiled. (I refuse to believe it was gas!) I was a sucker for cute babies, and his little face won me over. Like Danny, John Francis had a small PDA. This was not an issue, but the colostomy bag attached to his little abdomen did present some problems. I had to learn to care for it before The Foundling would release him to us, and that made me nervous. But he had that adorable little smile and I soon managed to clean out his bag, “like a pro,” one of the nurses said, as though his guardian angel was guiding my hands. Looking back now, I think perhaps he was!

Our first night at home, I had a slippery little mess on my unskilled hands. I think that was the only time I wondered about the wisdom of our decision! My sister, who was present for my struggles and frustrations, suggested that I use a meat baster to flush out his little bag. That solved my biggest problem and I continued to use that baster until his colostomy was reversed by the time he was two.

The other boys did not like the idea of the colostomy bag, although it was covered up and soon became a non-issue. They were also against us naming the baby “Francis.” They thought the kids in the neighborhood would make fun of him. I had to laugh at that. Here was this little Chinese baby with Down syndrome and a colostomy bag and they were worried about kids making fun of his name! But we compromised on that, and named him John Francis instead. To my knowledge no one has ever made fun of him or of his name!

After his slippery beginning, John Francis found himself the littlest child in a busy household. We had decided, even before adopting Danny, that our family life would not change because of the addition of children with special needs. We went to Church, took them all to McDonald’s, went shopping and on vacation. Other than toting more luggage, along with the usual baby paraphernalia plus that necessary baster, we managed. My husband took the older boys to their sporting practices and events. I stayed home with the little ones, and joined him when I could. We were a typical family, busy in the chaos of everyday life.

Russo 2 children

All of the boys got along, but Stephen took a special interest in John Francis. They were “roomies” and Stephen seemed happiest when he was holding the baby in the crook of his arm. I can still see the look of pure joy on his face as he went about the house toting John Francis with him. They went to bed and crib, as usual, on the night of February 12, 1990, but Stephen came out of his room about 10 p.m. in distress. He had a terrible headache and could not sleep. I gave him some pain reliever and put him back to bed. I could soon see that this was not an ordinary headache. We called for an ambulance and, by 3 a.m. the following morning, Stephen was dead. His undetected brain aneurism had burst suddenly, without any warning. That is what made us a “special family”: grief, not Down syndrome.

A family does not get over the death of a child. As time went on, we began to function again, but it was very difficult. The older boys mourned Stephen quietly, and my husband, Tony, sank into a deep depression. The laundry did not stop, the house did not stay clean, and the meals did not cook themselves. I managed to get through some very difficult days bearing the brunt of a loss which nearly paralyzed us all. Losing Stephen was the greatest challenge of our lives.

I knew that, in order for me to heal, I had to give myself over to something greater than my loss. It seems incredible to me now that my husband, Tony, went along with my desire to find another baby, but he did. We began to actively pursue another adoption and were led back to The New York Foundling Hospital the following year.

A baby girl with Down syndrome had been born in January of 1991. She had a large hole in her heart and lay, we were told, like a little blue doll. The agency did not want us to meet her until after her surgery. They were afraid she might not survive, and did not want us to face what would be another devastating loss. A lot of prayers were sent up to heaven during the next few months! After the surgery, we were finally called in to meet her.

Now this little bundle was a challenge of a different sort! She had not developed the ability to suck and swallow. On the positive side, her heart had healed well and her prognosis was good. I faced the daunting task of putting a tube down her nose into her tummy four times a day so that she would be able to get the nourishment she needed to thrive. I was to do that after I coaxed her to drink from a bottle, something she never quite mastered. I did not know if I was up to this task, this risk of giving our hearts to another child, at all.

After we met Maria Grace, I went to church. By then Stephen had been gone a year and a half. While sitting in the back of my parish church, I looked up at the altar, praying for guidance. There, my soul very clearly saw Stephen, holding a little baby out to me in his outstretched arms. It was as if he were offering me the gift of life. How could I reject it?

Again, angel hands seemed to guide my own as I learned to feed Maria Grace. We brought her home by the end of that week, another China doll, when she was seven months old and weighed less than eleven pounds. Matthew, our youngest birth son, had taken over Stephen’s place as “roomie” and chief holder of John Francis. I was able to devote my time to the baby’s careRusso 3 children resized

Our children are now grown. Our oldest son, Guy, works in a school with a boy who has Autism. He hopes to teach full time in September. Matthew worked in a Day Program with adults with special needs for three years and is looking forward to teaching Social Studies in the fall. David was a “Buddy” with United Cerebral Palsy and also “buddied” while he served in the army. He will graduate from college this May. Danny and John Francis both go to work daily in Hub Sites, gathering places from which adults with special needs go out to serve as volunteers in the community. Maria Grace also volunteers at a Hub Site. This only daughter of mine has grown into a confident 23-year-old who has the ability to keep us all in our places. Even the dogs! Down syndrome has not been a disability for us. It has been, instead, the lens through which we, my husband and I and all of our children, have learned to love each other. You can see our story on YouTube at “What to Expect When You’re Expecting a Baby with Down Syndrome”. I hope that the smiling faces it contains suggest that Down syndrome is a gift, like life itself.

How has it been raising a family in which three members have Down syndrome? It has been a gift to treasure – and to share!

A Lesson In Love From Our Dying Son

In the fall of 2011, my husband Patrick and I had been married for eight years and our family was rapidly growing. Our oldest child had just turned six and we were expecting our fifth child in December. John Paul was born on December 6, 2011. We knew immediately that something was very wrong. The delivery itself was traumatic, during which his arm was broken. When he was finally delivered, he didn’t make a sound. He couldn’t breathe. He was barely moving. He was whisked away to the neonatal intensive care unit. In the days and weeks that followed, we gradually started to understand the severity of John Paul’s condition. When he was 5 weeks old, he was diagnosed with Spinal Muscular Atrophy (SMA). We learned that SMA was a genetic, progressive, and terminal neuromuscular disorder. Gradually, every muscle in John Paul’s body would weaken and eventually waste away. Usually, death is caused by complications from a common cold because of respiratory weakness. You can imagine how we felt being told that our son would die from complications of a common cold, knowing that we had four children at home, several of whom were not yet adept at covering their mouths and noses when they sneezed or coughed.

Of course, Pat and I were devastated. We were trying to wrap our heads and hearts around the reality that confronted us. At the same time, we were also quickly falling desperately in love with our son. We saw his first smiles and he could even hold my finger in his hand. During our time in the NICU, it was a rollercoaster of singing lullabies and whispering sweet nothings one minute and the next using emergency procedures to bring his oxygen saturation levels back to normal because he couldn’t clear his airway the way most people do by swallowing or coughing.

We had gleaned some hope from families that we had been put in contact with who had children with the same diagnosis. They were living at home with their families, growing, learning and loving despite their weak bodies and many medical issues. In many cases, they were living way past what doctors were anticipating. We desperately wanted that for JP. We wanted our other kids to get to know their new brother and we wanted JP to feel the love and joy of a home and his family.

When he was 7 weeks old, JP had surgery for a G-tube, to enable us to feed him with a feeding pump and a tracheostomy because he required constant breathing support from a ventilator. When he was 3 months old, we brought him home.

It was beautiful to see the other kids interacting with him. Joey learned to use the suction machine and would practice reading to him, Liam loved learning to do his physical therapy exercises with him, Madie danced for him, and Ben would kiss him and play peek-a-boo. At every meal, they would fight over whose turn it was to give him his medicine or hook up his bag of formula to his g-tube port. This was our “new normal” and we loved it.

We also had some pretty major struggles in getting adequate nursing care and ended up doing much of his 24-hour care ourselves, taking shifts through the night on weekends, frequently jumping from bed to assist a nurse in clearing his airway and helping him recover his oxygen saturations to normal levels, taking him to appointments with just about every specialist you could name. He was hospitalized several times for infections. We also observed him quickly losing strength. Within a few months of his homecoming, he had lost the ability to smile, what little movement he had in his fingers disappeared and he was increasingly losing eye control.

Having a child who was so medically fragile introduced new challenges to our marriage as well. Never before was communication so critical. In some ways, it was easier to understand where the other was coming from. We were more sympathetic and patient because we were both going through the same sleep deprivation, emotional exhaustion, and tension of caring for a child whose life was not a given from one moment to the next. We were more unified and accommodating, and we literally knew where the other was at any given moment. John Paul gave us opportunities to love each other in new ways, like delaying waking the other when it was time for the 2 a.m. shift change or making sure the other got “snuggle time” with JP. We were reporting to each other when we needed to step away from John Paul’s side so that the other was “on call.” We also literally didn’t have the emotional energy for petty fighting. Did both of us snap sometimes in exhaustion, stress or frustration? Absolutely, but neither of us put that much weight on it. We both knew we were as vulnerable to the same weaknesses. Things that weren’t critical to the mission were quickly forgotten.

In other areas, our communication was more difficult than it ever had been. We had to make decisions about the future of our family and about how to do what was best for our son who was on life support, and we didn’t always agree. Little by little we learned that even when we disagreed quite strongly about the course we felt our family should take, we had to respect and trust the intentions and heart of the other. Resolutions were not always made overnight. Ultimately, because we both truly did have the interest of John Paul and the entire family in the forefront, when action needed to be taken, we were able to see eye to eye with time and prayer.

In February of 2013, we learned that much of John Paul’s brain had wasted. There were also new concerns that he had developed a type of nerve cancer. With a lot of prayer and peace, we discerned that God was calling John Paul home. On February 20, 2013, our parish priest said a Mass in our family room and, surrounded by family and songs of praise, JP joined the saints in heaven.

It has been a little over a year since John Paul died. Pat and I are learning how to support each other in the different ways we grieve. We are learning to be better listeners and better sharers. There is a deeper bond between us now. I can only compare it to what I imagine the bond is like between two soldiers who are fighting in the trenches together. I say “fighting” because even though John Paul isn’t with us now, the war is not over yet. It won’t be until we are both reunited with our little boy. There are plenty of battles left to fight and only God knows what they will involve. They may include more children with SMA. They may include more healthy children with other struggles. They will include the challenge of helping our children get to heaven.

Many times in the last two years, it took getting to that breaking point, whether it was feeling like getting adequate nursing care was impossible, receiving yet another call with bad test results from a doctor, or snapping at my husband in exhaustion, before I surrendered the circumstances to God. Ultimately, God did work everything out, but had I trusted Him with it sooner, perhaps I could have appreciated His hand in those moments rather than in retrospect. There are many statistics about the damage the death of a child can do to a marriage. Sadly, I don’t doubt their validity but it is a number that is unnecessarily high. When God gives us more than we can handle, it is because He wants us to entrust it to Him, and let Him take care of it. We can only fail if we try to do it alone. Of course, the myth is in thinking that we can do anything without God. Whether it is sharing the last piece of cake or burying a one-year-old son, we constantly rely on the grace that God gives us in our vocation to get our spouse and children to heaven.

Related Articles
“Spiritual Help for Grieving Parents” by Charley Monaghan

About the author 
Elena Kilner is the author of Letters to John Paul: A Mother Discovers God’s Love in Her Suffering Child, http://mooringspress.com/letterstojohnpaul.html.

About the photo
Patrick and Elena Kilner with their children, used with permission.

The Family in Service of Life: An Adoption Story

Early married years

We were married on June 7, 1997. Three months later, we moved into our first home, an 1800 square foot historic house in Staunton, Virginia, a city of about 25,000 located in the heart of the Shenandoah Valley. It had four bedrooms – perfect for our plans of beginning a family. Rob was working as a youth minister and part-time high school teacher and Robin was the second grade teacher in the same Catholic school as Rob. In arranging our house, we thought that it was important to keep one room set aside as a perpetual guest room, open to receive whomever Our Lord might send to us. We felt that this was a room that should be preserved as such even when we began having our own children. Little did we know how abundant God’s plans would be.

After three years of marriage, it became clear to us that we were not able to have children. Several doctors could not find any obvious biological problems. We saw fertility specialists who finally said that the only hope for conception was in vitro fertilization – an option we were not willing to consider. We wanted the gift of children, but we did not want to manipulate and attempt to force a gift that Our Lord was not going to give us willingly.

Three children in a row

Then came the rush. Some friends of ours were on the board of the local foster unit of the Department of Social Services (DSS). They had a five-month old baby boy in their care who would eventually be free for adoption, once the parental rights had been terminated. But before they asked if we were willing to take in the baby, they warned us: the previous two families who were offered this child turned him down because of the extensive intestinal and brain damage he had suffered as a result of his birth mother’s illegal drug use. They thought he would likely not talk, not walk, and may eventually end up institutionalized. On April 21, 2000, Christopher was brought to our home. We never looked back.

In late June, we were approached again. This time, there were two little girls, five years old and nine months old. Would we be willing to accept them as likely adoptive children? Of course! So on July 8, less than three months after Christopher came to us, we were joined by Lisa and Lorianne. Our permanent guest rooms were now full, and we began to look for a larger home. In the meantime, Rob moved to a full-time teacher position at the school and Robin took a year off, providing after school care in our home as she began the all-important role of being mother to our three new children.

Another baby in need of a family

We did eventually move around the corner to an old Victorian house, giving us more space. For two years we continued raising our awesome children and doing our best to form them in the ways of the Church. In July of 2002, DSS called again. This time, they had an eleven-month old baby, the youngest of three who were removed from their family. They were expecting that after 3-4 months, the children would be placed back with their birth parents, once things had settled down. Samantha came to us unable to crawl, speak, make facial expressions, hold herself up, or even reach for things. Her initial doctor visit suggested that she might be paralyzed from the waist down, since she did not respond to any stimuli there. Her two other sisters, Shelby and Sabrina, were placed with another foster family. DSS did not want to place all three with us because they were concerned about the level of care that Samantha would require. All three girls had spent their days locked in a storage facility while their parents went to work. They were fed apple juice and Twinkies. Samantha just had apple juice and had lost weight since her eight-month checkup. We could see her bones, she was so thin.

Two more makes six

The next two years brought with them quite a trial. It was during that time that Christopher’s birth parents’ parental rights were terminated through a series of lengthy court hearings. Likewise, the legal process for Lisa and Lorianne came to a close. This allowed us to have the three kids baptized. Up until that time, we were not the permanent parents of them. Therefore, we could not reasonably promise (as is required at an infant baptism) to raise the children Catholic. Only after the adoption was finalized, were there no longer any obstacles to the responsibilities of Baptism. During these two years, it also became more and more evident that Samantha’s birth parents were not able to care for their children. The goal changed from returning the girls to their biological parents to moving them to a permanent placement. That permanent placement was with us. In the summer of 2004, then, our family welcomed Shelby and Sabrina, bringing us to a total of six children. Two years later, feeling a call to move to Robin’s hometown and wanting to start over as a forever family, we moved to Omaha, Nebraska. As we write this article, Lisa (18) is a freshman in college. Lorianne (14), Shelby (13), and Sabrina (12) attend a Catholic school here in Omaha. Christopher (13) and Samantha (11) attend a Catholic special needs school in town. Rob is actually the principal of this school, and Robin works for the Family Life Office of the Archdiocese of Omaha.

Lessons from adoption: difficulties and blessings

Along the way, we have had some trials and some great joys. One question we decided to settle very early on was about communicating the facts of their adoption to our children. From the time they entered our home, they knew that we were their “forever parents” (adoptive parents) and they came from their birth parents. We worked hard to make it clear that their birth parents loved them, but were not able to care for them. We taught them that God brings tremendous good out of bad situations, and that is how we became a family: a family that God put together from painful situations, a family called to bring healing and joy to one another and everyone we meet. As the kids would age, we disclosed more and more information about their previous situations to the extent that they could understand. About twice a year we do Google searches for their birth parents. Twice, these searches revealed deaths: Christopher’s birth mother had committed suicide in an overdose, and Samantha, Sabrina, and Shelby’s birth mother had died of an illness. We told our children and worked through the grief and conflicting emotions with them. We have remained very open about their respective situations. At first, we had a fear that if we told our children too much, perhaps they would want their birth parents instead of us. This fear faded over the years, as the love and trust in our family deepened.

The difficulties that come from adopting out of foster care are certainly present. When children are ripped from their birth parents (even if the birth parents are not doing their job well), they are hurt in the process. There is no doubt about it. That pain enters into the adoptive family, and God is calling on the new family to be the method of healing. For us, this meant helping our children deal with permanent brain damage, severe learning difficulties, epilepsy, attachment issues, major depression, and even suicide attempts. If you would have asked us back in 1997 if were ready for all that, we would have said, “No way!” But Our Lord provided the grace, the people to help, and the love to bring healing not only to our children, but to us as a couple as well.

The joys of adopting, however, far outweigh any difficulties. These joys are no different, perhaps, than any other family who gave birth to their children. We will say, though, that our children, maybe because of their origin and adoptions, have a tremendous heart for anyone who is downtrodden, suffering, or poor in any way. They are very quick to reach out and want to help those in need – those who stand in the same position they once stood. Seeing this is for us one of the greatest joys of adopting: our own children seeking to show the generosity that they were shown.

The family is called to serve life

In his apostolic exhortation Familiaris Consortio (The Role of the Christian Family in the Modern World), Bl. Pope John Paul II named “serving life” as the second of four tasks of the family. God did not give the Lairds the ability to serve life through procreation and birth. Instead, He gave us the gift of serving the lives of those children He placed before us, and we are ever grateful for this gift. It has created our family and has transformed us as persons.

For families considering adoption, we have this to say: If Our Lord places the desire in your hearts, then go for it! All the difficulties begin to fade away when your brain damaged son throws a touchdown pass in the Special Olympics, or your daughters give money for less fortunate classmates to buy snacks after school, or your oldest daughter seeks a profession to help those who struggle to overcome the difficulties she once faced. Our family is not perfect, far from it. But in the end, the family that God put together has helped each of us follow Him more closely. And isn’t that the mission of the family?

About the authors
Rob and Robin Laird, pictured above with their children, were married on June 7, 1997. Rob is the Principal of Madonna School, a Catholic school serving students with special needs, and Robin is the Coordinator of Marriage and Family Ministries for the Archdiocese of Omaha. They currently reside in Omaha, Nebraska with their six children, Lisa, Lorianne, Christopher, Shelby, Sabrina, and Samantha.

Parenting: What Airlines Can Teach Us

I have been blessed with being a part-time stay-at-home dad since 1999 and a licensed therapist since 1996. I thank God for the gift of being a dad. Parenting is the most exhausting and exhilarating thing I have ever done. I have never been so caffeine-dependent in my life, but I am convinced that God is OK with that.

I do find that parenting for me and my wife is much easier when I follow the profound lesson of airlines. (I am not talking about the way they price their tickets or overbook most flights.) Let me explain.

Before every flight, the airline attendant comes into the cabin and tells the passengers something like this: “If cabin air pressure changes, masks will deploy from the ceiling. Grab the mask and make sure there are no twists in the tubing. Gently place the mask over your face. Oxygen will begin to flow immediately into the mask. Place the mask on yourself first and then help those around you who are unable to assist themselves. Have a nice flight and enjoy the pretzels.”

Here is the key: “Place the mask on yourself first and then help those who are unable to help themselves.” What are the reasons they teach this?

Airlines know that if adults are able to receive the oxygen they need first, then there is a chance that others can be saved. For example, we have a seven-year-old son who has Down’s syndrome. If in the middle of a flight, a mask with a rubber band comes down from the ceiling he is going to have a great time with this new toy from the sky! He will be flinging it all over the cabin, playing with the rubber band part especially. His oxygen supply will become critically low.

That is the reason airlines tell us to put our masks on first. If I live there is a chance I can help others. If I don’t get the oxygen I need, then I will pass out, guaranteeing that those who can’t help themselves will also pass out. If parents could learn from this model I am convinced that our families would be helped tremendously. Here is how it would look:

Parents would not feel guilty when they devote positive time away from their children: time to pray, time to exercise, time with life-giving friends. Of course, this can’t happen all the time, but we as parents have to make sure some of our basic needs are being met. These met needs provide much-needed air in the midst of a near-suffocating amount of parental tasks.

When we meet our basic needs then we are better able to meet the demands of our children. How do we do this?

It depends. If you are married, talk with your spouse and plan ahead for times when you can pray, go for walks, talk with uplifting friends, visit with a spiritual director, or simply take a nap. If possible, plan a retreat every year. I try to go on two or three retreats a year, and so does my wife. I miss my family, but I come back refreshed and full of new oxygen to share.

Also, plan on syncing your calendars at least twice a month. During this time talk to each other about how your needs are being met. If you need more time away for life-giving activities plan them ASAP. Spirit-led time away will always help our families.

If you are a single parent perhaps start a babysitting group so one person can babysit once or twice a week, giving the other parents some free time. Or, talk to your church and see if there are some trusted Confirmation students who are good babysitters and need service hours. Time alone as a single parent is critical.

When I have shared this wisdom with hurting families and the parents start to create positive times to meet their needs, amazing things start to happen. Parents become more patient with their children. As they become gentler with themselves, they become gentler with their children. They begin to breathe the breath of new life.

May God bless you as you meet your needs so that the Holy Spirit will equip you to meet your children’s needs.

About the author
Jim Otremba, M.Div, M.S., LICSW, is a nationally-known workshop presenter on parenting and other topics

This article is adapted from the author’s parenting workbook: The Daily Dozen of Christian Parenting. To order the workbook or to arrange for a workshop in your parish call the Center for Family Counseling at (320) 253-3540 or visit www.healinginchrist.com

Illness

Many kinds of illness- physical, mental and emotional- can impact a marriage. They range from the occasional cold, to an unexpected accident, to chronic or terminal illness.

Here we consider long term or chronic illnesses, and serious conditions such as cancer, loss of a limb, diabetes, and life- altering disabilities. All of these test the “in sickness and in health” part of the couple’s marriage vow. Illness, especially chronic illness, changes the relationship with spouse, family, friends, social network, and God. Illness can bring out the best – and sometimes the worst – in both spouses.

A long or severe illness is usually a crisis- a turning point that can lead to ruin or renewal. A chronic or life-threatening illness creates a demand for a “new normalcy.” Not only do familiar daily patterns change, but also your expectations of how you will live, love, and share a mutual life. There is no going back to the way things were – only a going forward. At times it can feel like a roller coaster ride from hope to despair and back to hope. That’s normal. In addition to dealing with the illness itself, other issues that couples need to address include finances, ability to work, lifestyle, intimacy, and emotional and practical support for everyday life.

Dealing with the illness

This starts with understanding your illness and accessing the best medical treatment possible. Many people turn to the internet for assistance. This can be both a blessing and a curse. Which websites offer reliable help? How can you distinguish valid medical information from advertisements? See the websites below for a start. It’s crucial to have a strong network of support. Initially, many people want to help by bringing food, running errands, visiting, calling, and praying. As time goes on, however, many do not know how to give sustained help. The person with the illness and the caregiver(s) may fear asking too much or too often.

Suggestions

  • Keep building your support networks as you age. Make sure you ask many people who can give at least a little time rather than depending on one or two people to do it all. Draw from church groups, neighbors, friends, relatives, community support, and support groups of persons with similar illnesses. Try to have at least five good support friends, or more, to insure that one will usually be available to lend a hand. Depending too much on the same group of people can burn out the entire group.
  • Develop a mutually respectful relationship with your doctor(s). The less stress you feel about your medical care and frustration of dealing with the system, the better your chances for recovery.
  • The primary caregiver needs care too. If you are the caregiver, treat yourself with as much kindness and care as you do your ill spouse.
  • Take advantage of support groups for people with your illness. Look into partnering with a “patient navigator” to help you move through the medical system. Hospitals often sponsor support groups or can link you with a mentor.

Financial stressors

Some couples are blessed with insurance that covers expensive treatments when illness strikes. It may not cover lost income, however. When a wage earner loses a job, everything changes. You may need to draw down your savings and cultivate a simpler lifestyle. The illness may affect the kind of job your spouse needs to get.

If a couple is younger (especially if you are still in the active parenting stage) the financial stressors can be even greater. Some couples use up their resources and need to declare bankruptcy or hope to qualify for Medicaid.

Suggestions

  • While you’re still well, consult with a person who understands the financial issues involved with chronic illness and disability. Make sure you have both a short term and long term plan.
  • If it’s too late for the “while you are well” suggestion, do it now and lean on the medical support services to guide you.

Work

The loss of a job has repercussions besides loss of income. Identity is closely tied to one’s work. Work helps us feel productive, important, and useful. We may need to grieve the loss of this identity. Loss of employment also takes away important social networks. The caregiver may have to take on additional employment or household responsibilities. These role reversals can be difficult for both partners. Few people like depend on another for daily care. The ill spouse may feel guilty about burdening the caregiving spouse. Self-esteem takes a hit. Meanwhile, as generous and loving as the caregiver is, this “job” is time-consuming and draining.

Lifestyle and Recreation

The caregiver might have to do things that he or she had previously not done. The illness can become the focus of your life and everything can revolve around it: researching it, getting to/from treatment, dealing with side effects, doctor visits and support groups. Even cooking can be a challenge if the ill person needs a special diet or needs to be coaxed to eat. Recreational pursuits that both of you previously enjoyed may become physically impossible. Travel may be more difficult. This doesn’t mean you don’t have fun; you just have to be creative about finding new interests that fit changing physical abilities. Recreation may become more passive such as watching TV, movies, or going out to eat. The caregiver may need solo recreation such as working in the garden or going out with friends.

Suggestions

  • Careful planning can help couples work out treatment schedules, but make peace with the reality that the future is not knowable or predictable.
  • Keep a sense of humor. Make sure that each day includes some type of play and spiritual activity.
  • Do not let the illness become the primary organizing principle of your life, even though recreation might not be what you’re used to. Persons who do the best in treatment are those who continue to play, take short vacations or day trips, and continue to socialize to the extent they are able.

Intimacy and sex

Physical limitations, emotional and physical fatigue, financial pressures, and lack of time can all affect intimacy and lovemaking. Snuggling may replace sexual intercourse. Sometimes, even touching or holding is difficult. Many chronically ill people report that although sexual intercourse is limited or non-existent, emotional and spiritual closeness increases because of the shared trauma. Look for new ways to express your love so that you can sustain a caring, growing relationship.

Mental Illness

A spouse with mental illness presents an even more complicated situation. The disease is harder to “see” and often caries a stigma. Relative and friends may not be compassionate. It can be hard for the caregiver if the spouse is unwilling to accept help and follow treatment. The mentally ill person may show little gratitude for the efforts of the caregiving spouse. In this situation, a support group with an effective counselor is a must.

RESOURCES:

Hanks, Jerry and de Cordova-Hanks, Bobbie. Tears of Joy. Infinity Publishing, 2006.

Stephen Ministries trains and organizes lay people to provide one-to-one Christian care to hurting people in a faith based setting.

The author acknowledges the Durham, NC Cancer Support Group for its help.

For Further Reading:

Resources for Caregivers:

  • Nourish for Caregivers – a faith-based program designed to meet the practical, emotional and spiritual needs of family caregivers.

About the author
Susan Vogt is an author and speaker on marriage, parenting, and spirituality. Her website is SusanVogt.net.

Little Miracles

Andrew and Anna, married for nearly 10 years, face one of the biggest challenges that any marriage can confront. In June 2006 their daughter Rose was born with DiGeorge’s syndrome, a serious genetic disorder caused by the deletion of a small part of a chromosome. Because the condition is rare – 1 in 4,000 – Rose’s prognosis is uncertain. Right now doctors are debating how to treat her heart and gastrointestinal abnormalities.

In the meantime, the couple’s life has turned upside down. They try to maintain some normalcy for their other children, ages 5 and 3 ½, even as they struggle to meet Rose’s medical needs. Constant medical procedures and midnight wake-up calls to give Rose her medication put a lot of strain on the family. Tempers get short and “the small stuff creeps up.” Much-needed breaks, such as leaving the children with a teenage babysitter so that the couple can enjoy an evening out, have become impossible. Andrew and Anna know that marriages break up over these kinds of difficulties, and they are determined not to let that happen.

Friends, family, and the Secular Franciscan Order offer understanding and practical support. Andrew finds that Pope John Paul II’s encyclical, The Christian Meaning of Human Suffering is helpful for people going through a situation like theirs. Andrew and Anna have a special devotion to Saint Teresa of Calcutta.

In the face of such uncertainty, the graces of marriage keep Andrew and Anna going. They have learned to celebrate the “little miracles.” “Rose came home,” said Andrew. He and Anna believe that God entrusted Rose to them, and they know that God will be with them in whatever lies ahead.

Marriage and a Special Needs Child

Carolyn called me through the Pastoral Solutions Institute to discuss her marriage to Tom.

“We were like a lot of couples. It used to be hard to find time for each other what with work and the boys, but when our Jimmy was diagnosed with profound autism, it was like a bomb went off. Tom just withdrew into work and all my time was taken up taking Jimmy from one doctor to another and trying to keep my other kids’ lives as normal as possible. All of a sudden, the little bit of time Tom and I had was totally gone. Between that and how resentful I feel toward him for leaving everything to me, the tension is terrible. I don’t know where to begin.”

Carolyn and Tom are like a lot of families with children who have special needs. According to some research, the divorce rate for couples with special-needs kids hovers around 80 percent. More hopefully, however, other studies indicate that 18 percent of these couples in this situation say their children have brought them closer together. What’s the difference between the couples who rise to the challenge and those who don’t? Here are some tips.

The challenges of raising a special-needs child can become a blessing.

  • You’re in it together. Under any circumstances, a couple needs to be a team, but this is rarely as true as when a couple is confronted by the challenges that can come with raising a special-needs child. But the challenges can become a blessing if the couple responds to each challenge together. The research is consistent that the marital problems couples may experience in this situation are not so much caused by the time and effort it takes to attend to the child’s needs, but rather from the tendency for couples to retreat into themselves and stop communicating with one another.
  • Make time to pray together and communicate about schedules, feelings, and needs. Be sure to find simple ways to take care of each other. Little actions like saying, “I love you,” calling from work to check-in, and thoughtful gestures that communicate your appreciation for each other are critical to keep up morale and marital rapport. It doesn’t have to take a lot of effort, just thoughtfulness. Making a “love list,” in which you and your mate identify simple ways to attend to each other, can give you ideas for the days you are so busy you can’t even think. (See my book: For Better… FOREVER! A Catholic Guide to Lifelong Marriage for more details).
  • Deal honestly with your frustrations. Sometimes parents struggle because their feelings of intense love for their children become intensely complicated with frustration, exhaustion, irritation, resentment over the care that is required of them, as well as guilt for feeling anything negative about their child, for whom they would happily give their lives even on their worst day. These negative feelings usually pass soon enough, but couples can help each other manage these emotions by being willing to express them to each other, tolerate them from each other, and nurture each other through those difficult reactions and help each other get back on line. It can be frightening to confess these negative feelings to each other, and it can be tempting to want to shut down your mate when they are expressing their frustrations (even when you feel similarly). But couples who find the courage to confess and listen, are the couples who rise to the challenges because of each other’s support and love.
  • Take time for each other. Every couple needs time alone, but it is critical for the parents of a special-needs child who need time to process their stress and reconnect. Getting this time can be difficult because finding competent childcare can be a challenge, especially if the child’s disability is serious. But even when date nights out are impossible, it is essential that a couple at least carve out some time at home where they can be alone to play, pray, talk, and be intimate with each other. Studies consistently show that people who deal with stress by reaching out, instead of pulling in, can learn to thrive despite–or even because of–their challenging circumstances. Cling to each other in good times and bad.
  • Get assistance and support. Make a list of the support and resources you feel you need to help your child achieve his or her potential and to help your marriage and family function at its absolute best. Even if you think it is impossible to meet some of these needs, write them down. Then, don’t be shy about telling everyone you know about these needs– regularly. As Christians, we are privileged to be part of a community that is obliged to respond to one another in generosity and love. Don’t feel that you are burdening others with your requests for babysitting, housekeeping help, respite, or support. Renounce the pride that tells you that you shouldn’t trouble other people with your problems or needs. Give others the gift of allowing them to be a gift to you.
  • Seek help quickly. When you are traveling down the road of raising a special-needs child, you can’t afford a breakdown. Seek assistance at the first sign that you are experiencing a spiritual, emotional, or relational problem that you aren’t sure how to get through on your own. Most disabilities have national organizations dedicated to researching treatments and supporting families. Contact them early, and become involved in your local chapter and any support groups, social outlets, or advocacy opportunities they offer.

Additionally, make sure that you are getting regular spiritual direction, and even if your family is doing well, strike up a relationship with a counselor you can trust so that if you need an answer to a quick parenting question or require a marital adjustment, you don’t have to spend weeks looking for competent help. Prior planning helps assure that help will be available right when you need it.

About the author
Dr. Gregory Popcak is the author of eight books integrating the Catholic faith and psychology. He is the director of the Pastoral Solutions Institute, an organization that provides counseling and other services to couples, families, and individuals.

© The Couple to Couple League International, Inc. P.O. Box 111184, Cincinnati, OH 45211-1184. Used with permission.

Editor’s note: The Catholic Church observes October as Respect Life Month. There are many ways to promote and protect life; the above article focuses on one. For more information visit the Respect Life website.