Special Needs, Special Graces

May/June 2008 Issue | Posted by Daria Sockey in Features

I knew something was wrong with Michael. He seldom spoke, compared with his six older siblings when they were 3. And his behavior — it was like a wind-up toy that wouldn’t ever quit, punctuated by intermittent shrieks with no apparent cause. 

“This must be that ADHD you read about,” I said to myself. “And it looks like we’ll have to get him into speech therapy before long.” One thing I knew for sure — Michael was not autistic. I learned about autistic children. The autistic child was emotionally withdrawn, rocked back and forth, and was unresponsive to touch and affection. My son loved hugs and kisses.

Then one day, shortly before his evaluation at Children’s Hospital, I was browsing through Barnes & Noble and my eyes fell on a quote from parents of an autistic child, recalling how they had used my exact reasoning: “No, it can’t be autism. She’s too affectionate …”

Uh-oh.

For days my private prayer life became nothing but a repeated question: “God, what on earth were you thinking to do a thing like this to us?”

This is a fairly common reaction when parents learn that a child has a severe disability. But God has far more in mind than making me miserable. I learned that, and so did four other moms of God’s special children. Here are their stories.

“Truly a miracle”

Debbie Iannone of Paramus, N.J., had already had an ectopic pregnancy and a miscarriage. She and her husband, Emil, had just about decided on adoption.

“But we thought adopting a special needs child would be too much for us,” she said. “I still think God has a little chuckle over that one!”

They had just settled on an agency when Debbie found that she was again pregnant. She resisted the idea of pre-natal testing — abortion for any reason was out of the question — but then changed her mind. The amniocentesis re­ ­vealed that their unborn daughter had Down syndrome. Further tests revealed fluid around her heart and lungs. It seemed unlikely the baby would live until birth.

“I was incredibly upset,” said Debbie. “I wondered why God let me get pregnant again if he was just going to take my daughter away. In spite of this, my husband and I felt absolutely certain that one day we would understand why we went through this.”

Each new ultrasound showed the baby’s condition getting worse. 

“The first time I felt her move, I was hysterical. I think I’d been pretending I wasn’t pregnant and trying not to think about it,” she said. “But in a short time, I started to look forward to her movements, and if a little time went by without me feeling anything, I’d start to worry that she had finally died. But she’d always start moving again. We were on lots of prayer lists. My prayer was for God to help me deal with whatever he had planned for me.”

One day, Debbie noticed a marked increase in little Theresa’s movements. The next ultrasound revealed a miracle: The fluid had almost entirely disappeared.  “The pediatric cardiologist — who is Jewish — immediately called it a miracle and still does,” she said.

Theresa did need heart surgery at eight weeks, but came through it fine. Today she is doing well, a sweet, easygoing child who loves going to preschool.

Debbie has had her questions answered. “Why did God let me get pregnant and then let me think I was going to lose Theresa? Because whatever challenges I have with her will never come close to the ordeal of carrying her for 20-some weeks believing she was going to die before I even met her.” 

As for the future, “I pray a lot, sometimes for Theresa and her health or her future. But mostly I pray for the strength and patience I need to be a good mother. We both believe that there was a reason Theresa was given to us. We feel fortunate to simply believe, ‘Thy will be done.’”

“We’ve been given an enormous gift”

Mary Ellen Barrett of Lindenhurst, N.Y., had the feeling something was not quite right with her firstborn, Ryan, while he was quite young. 

“He didn’t clap or play peek-a-boo like other babies. … Everyone kept telling me that boys just develop slower. … I kept frantically trying to get him to do things like other babies I knew.” By the age of 2, Ryan had been evaluated and was receiving early intervention in language and education. He didn’t begin speaking until he was 3 years old.

His eventual diagnosis was pervasive developmental disorder (a condition that is related, but not identical, to autism) with some characteristics of obsessive compulsive disorder, as well.

Mary Ellen has also had to endure the anti-life attitudes of doctors. 

When Ryan was diagnosed, she was pregnant with her third child. “The neurologist said to me, ‘You know this runs in families, but I guess it’s too late to do anything about that’ — he was pointing to my big belly,” said Mary Ellen. “With each subsequent pregnancy, I have been warned that the child will likely be ‘damaged.’ That’s the word they use. I think people who consider these children damaged are themselves broken.”

Ryan is a study in contrasts, of sunshine and shadows.

On the one hand, he struggles with reading comprehension, despite trying every remedial method at school. He becomes extremely frustrated and angry with his inability to both decode and understand words at the same time.

On the other hand, Ryan is a gifted musician, an accomplished guitarist who learned to read music with no trouble.

A switch from traditional schools to home schooling has enabled Ryan to make a little progress with reading, although it is still difficult. But he really shines on Friday night, when he plays guitar for a group of families that gathers to pray the Rosary. Ryan’s personality can be prickly. He doesn’t understand humor, so a joke at his expense makes him angry. He also has a compulsive way of laughing that can irritate others.

But, Ryan loves to pray. “Long before he could tell time he somehow knew when it was 3 p.m. and would pray the Divine Mercy chaplet. He prays the Rosary daily and loves Our Lady. He wants nothing more than to be a Franciscan Friar of the Renewal and play guitar at Mass every day for the rest of his life. … It’s not unusual to hear me say, ‘Stop praying and go outside and play ball.’”

The Barretts realize what a blessing Ryan has been: “My faith has greatly deepened due to Ryan’s disability,” said Mary Ellen. I gave him to Our Lady’s care and began praying Rosaries regularly. Ryan’s abnormalities were accepted and treated as part of his uniqueness. We have grown in faith together, and the biggest blessing has been the conversion of my husband, David, to the Catholic faith. I don’t know that any of this would have happened if Ryan had been born without his disabilities.”

“We’ll have perfect bodies in heaven”

Sean and Joseph, the two younger sons of Pattie and Chris Curran of Kernersville, N.C., have a rare genetic condition known as Shwachman-Diamond syndrome. It’s a disorder that affects the bone marrow, pancreas, and other organs, and puts the boys at risk for leu­ kemia. Bone marrow transplants for SDS are possible, but very risky.

Starting at around 6 months of age, the boys failed to gain weight or grow, despite an adequate diet. They were also frequently ill, as every little cold became a full-blown bacterial infection.

They spend one day per month in the hospital receiving intravenous immunoglobulin. Because of this, they can gain weight and grow, but the boys are still small for their age, and extremely prone to infection, similar to children who undergo chemotherapy. In addition, Joseph has obsessive-compulsive tendencies, which make medical procedures more traumatic for him.

“But he’s a wonderful child — bright and full of energy,” said Pattie.

“I often tell people that there are many blessings to be had in having two chronically ill children,” she said, although Pattie admits she wouldn’t have said that when it all began seven years ago.  She re­ ­ counts a conversation she overheard one day.

Joseph: “You know, when we get to heaven we won’t have to take pills or anything!”

Sean: “I know! We’ll have perfect bodies in heaven. No more pokies or sickness! I can’t wait to get to heaven.”

Joseph: “Me either!”

Pattie said, “At first I was sad hearing them talk like that, but my sadness turned to a smile as I realized they had the attitude I should have — that we should all have. We should have that eagerness to get to heaven.”

The Currans are big on the concept of “offering it up”: giving their illnesses and related inconveniences as a gift to God, to join with his Son’s to help others.

“I used to feel down because of the boys being sick and suffering so much,” said Pattie. “Now, as St. Paul says, I rejoice in these sufferings and realize that God has chosen them for some great purpose; and some of that purpose has been fulfilled! We have all grown stronger in our faith, and I know they have touched many lives while at the hospital. God has used our family’s suffering to teach us to rely more on him and showed us how rich our blessings really are.”

Recent update:Joseph is likely to need a bone marrow transplant in the near future, but so far no match has been found for him from the 6.5 million donors in the national registry. Please keep Jo­ ­ ­ ­ -seph in your prayers.

They keep showing up — a chosen vocation

They have four biological children. All have allergies and asthma, one has learning disabilities, another has Asperger’s syndrome (a milder form of autism), and one has miplegic migraines, which give him symptoms like cerebral palsy.

Most parents would quit having children at this point. 

But Jenny and Chris Kelly, who worked with special needs children all their lives, knew they had a calling. They began with taking in disabled foster children and eventually adopted three of them. Their special challenges range from reactive attachment disorder to bipolar disorder to spina bifida. 

But Jenny and Chris don’t see kids in terms of their problems. “We haven’t gone through the grief so many parents do,” said Jenny. “We have always enjoyed the uniqueness of each child with no expectations other than that they become the best they can be and that those who are able become productive members of society. Those who ‘can’t,’ provide unique opportunities for the rest of us.”

That doesn’t mean that it’s nonstop sweetness and light in the Kelly home. The challenges can nearly drive them crazy a times: hospital stays, medications, operations, defiant behavior that has led to holes in walls and broken windows, having to leave church or stores because of tantrums, dealing with catheters, bed wetting, and misunderstandings with friends and family who just don’t get why the Kellys chose this lifestyle.

“On more than one occasion,” chuckled Jenny, “I have screamed [to God] at the top of my lungs, ‘You created them! You take care of them!’ I have a running dialogue with God most days.”

But all these troubles and inconveniences make the victories all the more sweet. “We celebrate those triumphs and milestones in a big way,” she said. “The love and smiles are unconditional. When our kids succeed in a sport, write a paper, dress themselves, make friends, or get praise from strangers it is magical. It gives a sense of a job well done, of pride and thanksgiving.”

The Kellys are perhaps the ultimate pro-life couple.

Chris, having been himself adopted, feels strongly that they should be open to every life, no matter how that life comes into the family. He and Jenny feel that since God has entrusted these children to them, he will see them through.

“Without our children we would be more selfish and materialistic. We’d be less patient, kind, compassionate, and empathetic,” said Chris. “In return for putting our trust in God we are taken care of. We always seem to have what we need when we need it. … We are called to parent special kids. They keep showing up.”

My own Michael

Back to us in my own home. 

Michael is 11 now, and I am starting to get an idea of what on earth God was thinking when he sent us our youngest son. He was thinking of teaching me humility and patience. He was answering my unspoken dissatisfaction that the only way I ever helped the poor was to impersonally drop checks in the mail from time to time — so he sent one of his beloved poor ones to be my very own. 

He was thinking that by means of Michael, my husband and I, with our children, could be shaped into something far more lovely than we would otherwise be. Every night I pray for Michael’s healing, adding “if it be your will — and if not, then give us joy in caring for him just as he is.”

That prayer has already been answered.

Daria Sockey writes from

Venus, Pennsylvania.

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