Special Needs Guide
What makes my family special?
Photos by Natasha Barros
Mark Kritzman, 10, right.
This unorthodox athlete has a need for speed
When you realize your baby’s going to come into the world and go straight to surgery, it’s tough to focus on much else. “Baby boy” Kritzman was diagnosed in utero with gastroschisis, a hernia in the abdomen that allowed part of his intestine to develop outside the body. After going into fetal distress, he was born via emergent C-section at 32 weeks. Mark Kritzman entered the world kicking and screaming, and was on a ventilator while waiting for surgical repair of his birth defect.
During his stay in the NICU, Mark underwent a brain ultrasound that revealed some cysts; doctors said these may or may not be significant. After 25 days in the NICU at Mott Children’s Hospital, Mark Kritzman came home to his mom and dad, Shelli and Jim on New Year’s Day 2002.
Hypervigilant, the parents quickly noticed that some things weren’t quite as they should be. “Around six months, we realized that Mark wasn’t reaching some of the milestones: things like sitting up or being able to roll over on his own,” says Jim. “We took him to a pediatric neurologist with a list of seven things he couldn’t yet do. The pediatrician added two more.” The Kritzmans received a devastating diagnosis: Mark had spastic cerebral palsy, a condition that results in extreme tightness of muscles. All four limbs were affected, resulting in quadriplegia.
Physical therapy started immediately. Since muscles are constantly tense, stretching to achieve greater range of motion played a major role in daily sessions. Mark’s coaches and parents worked with him on positioning, sitting, and using his arms to reach for things. Progress was slow but steady. Mark could roll over solo at age three. He’s also undergone a variety of procedures: spinal surgery at St. Louis Children’s hospital, a laser tendon release procedure at Summit Hospital in New Jersey, and receives regular deep muscle injections of botox to help relieve some of his spasticity. Through all of this, as well as rounds of intensive physical therapy, Mark has never complained. “Homework,” says Jim, “is another story.”
The Kritzmans have also discovered some less traditional forms of therapy. When Mark was 22 months, Jim heard about hippotherapy through a support group. “Riding horses is amazing for building trunk strength,” he says. “We went to Great Strides Therapy, and the owner, Liz Sang-Watson, had never worked with a patient so young. But she was game, and Mark loved it.” Mark’s a regular at the stable; his favorite music plays as he rides, and he throws back his head to yell, “Yee-haw!” Though sessions provide a tremendous amount of physical work and benefits, the Kritzmans know that they would do them just for fun.
Avid travelers, the Kritzmans take Mark on every family vacation with his brothers, Luke, eight, and Joey, two and a half; he’s been to Mexico more than once as well as Disney World. “We’ve got the drill down,” says Jim. “With three kids, one in a wheelchair and one a very active toddler, we can get through security faster than folks who are struggling to get their laptops out of their backpacks.” Of the family’s three sons, Mark’s proven to be the daredevil so far. “If Mark weren’t in a wheelchair, I’d have to make sure he wasn’t jumping off the roof with an umbrella,” says Jim. “He absolutely loves to go fast.”
Of course, all the therapy has a significant price tag. Shelli and Jim have held a silent auction, a pig roast, and run a marathon to help cover costs, proving they’re literally ready at any time to run the extra mile or more for Mark. And Mark's been bitten by the marathon bug, finishing three half marathons, pushed by Shelli. They train and compete together, while Dad acts as support team, biking along taking pictures and providing moral support, as well as with fixing and adjusting anything that may break. Mom and son are starting to train for their first full marathon, with Dad is working on a custom wheelchair/stroller that will be more comfortable for Mark and lighter for Mom.
“We have a phenomenal support system of family, friends and neighbors. We think one of Mark’s purposes in life is to bring out the best in others,” Shelli and Jim agree. And they’ve learned that little things that many people take for granted are enormous blessings. “The first time your child says a word, or ‘I love you,’ or feeds himself — you just see that light turn on, it’s incredible.” Their advice for any parent: “Never underestimate what your child can do. Just when you think they can’t do something, they’ll surprise you.” For instance, one day when Mark was four, Jim realized that he was singing along the words to a Christmas carol. “We played instrumental Christmas music around the house a lot, but I couldn’t figure out where he’d learned the words, and honestly, with Mark being speech delayed, I never really knew how much he was taking in.” He asked Mark where he’d learned the words. Mark, who had rarely spoken, confidently piped up, “100.3, WNIC, your official Christmas music station!”
Parents Jim and Shelli with sons Mark, Luke & Joey, above.
Ella Naebeck, 5, right.
Pretty please, hold the sugar
You might hear a lot of little girls say those words with delight. But if one is pointing to what looks like a small hot pink cell phone pouch as she says it, she might be Ella Naebeck. That device is a pump that administers insulin in the proper doses throughout the day and night. The insulin goes through a tiny catheter into a needle that’s inserted subcutaneously in the wearer’s abdomen, and that needs to be changed every few days.
“It was definitely a little daunting to learn how to do that,” says Ella’s mom Leslie. “But it’s saved Ella from receiving six to eight shots a day. As is, we still have to do several finger sticks to check blood around the clock.” Ella is one brave kid.
Now 5, she received a type 1 diabetes diagnosis two years ago. During potty training, Leslie and Rob noticed that Ella was drinking a hundred ounces of water per day. At Ella’s three-year well child checkup, Leslie mentioned that fact to the pediatrician. A blood test revealed that her blood sugar was over 700; the normal range for her age is between 120 and 170.
“She was actually beginning to enter diabetic ketoacidosis, which is when your pancreas is spilling ketones, which are toxic acids, into your urine,” says Leslie. “We could have lost her. She was rushed to Mott Children’s Hospital; fantastic is an understatement for the treatment she received there.” After four days and three nights, Ella had stabilized enough that she could come home.
The condition shocked Leslie and her husband, Rob. No one in either of their immediate families has diabetes, either type 1 or 2, and neither carries the gene.
“This is never gonna go away,” says Leslie. “Ella needs insulin any time she has any carbohydrates at all. And if you know anything about nutrition, carbs are in just about everything.” While more refined carbs aren’t completely off-limits — for instance, a little bit of birthday cake — Leslie seeks out lower-carb options most of the time. “Ella knows she can’t have candy like other kids,” says Leslie. “But she never complains about it. For her birthday, she wanted her two favorite foods: steak and broccoli.”
Currently, the family’s raising money for a diabetic alert dog. Indianapolis-based Alert Service Dogs (alertservicedogs.com) provides dogs that stay with diabetics 24/7 that are trained to smell any upset in their person’s condition. The new addition to the Naebeck family could spare Ella many of the blood checks that have to occur around the clock. “At night, it’s like having a newborn,” says Leslie. “We have to check her blood sugar in the middle of the night, sometimes multiple times.” Pop cans, bottles, and donations are welcome, and can be dropped off at Saline Veterinary Service, P.C. (Interested readers may also call or visit any area Huntington Bank and inquire about the “Service Dog for Ella” account.)
And diabetes has helped the Naebecks connect with other families they never would have met otherwise. At a water park once, a family from Canton noticed Rob’s JDRF Walk t-shirt (the Juvenile Diabetes Research Foundation annual fundraising event). Now Brady, their son, is one of Ella’s best friends, and the families have teamed up to raise funds for the organization.
Their team name? Little Heroes.
The Naebecks: Benjamin, Rob, Ella and Leslie, above.
Sufyan Hammoudeh, 12, right.
A hard worker keeps things positive — and makes up for lost time
Sufyan Hammoudeh was two. And he wasn’t talking.
Relatives told his mom, Hanna Nimer, not to worry about it — even though his sister Fatima, 11 months younger, had a significantly bigger vocabulary. But Hanna, co-founder of the Fuller Hill Childcare Center, has a background in early childhood studies. Sensing something wasn’t quite right, she contacted Washtenaw Country Head Start services, who put her in touch with Eastern Michigan University.
Tests confirmed Hanna’s hunch: Sufyan was experiencing greater than moderate speech and language delay. He had difficulty processing information at the same speed as most people; Hanna says that he would get “lost in language.” Prepositional phrases like “under the table” or “by the door” were particularly difficult. “Any complex sentence, especially things like directions, would really throw him,” says Hanna. “If you gave him a two-part instruction, like ‘pick up your book and put it on the table,’ he couldn’t remember the second part in the time it took him to process and complete the first part.”
It wasn’t easy to face the fact that her child had special needs. “I come from a family of 13 children, and none of us has any learning disabilities,” says Hanna. “It’s very hard to admit to yourself that your child is different, that he needs help. As a mom, you’re so torn. You see your child struggling, and sometimes other kids would make fun of him. That hurts.” She also knew from her training that early detection was key.
Working primarily through the Ann Arbor public school system, Sufyan and his parents have learned strategies tailored specifically to his condition. He has math and vocabulary tutors, works with a speech therapist, and has learned a variety of memory techniques that help him with directions. Every year, an IEP (Individualized Educational Program) tailors a program for him at his school.
It’s hard work, particularly now that Sufyan’s in seventh grade at Tappan Middle School in Ann Arbor, a notoriously tough year even for students without learning disabilities. “He’s a hard worker and has a great attitude, but he can get pretty frustrated now,” says Hanna. “It’s a ton of work, and it’s just that much more challenging for him.” But the family recently received a pleasant surprise: Sufyan scored in the low average range on the MEAP tests. “Yes, it was low, but it was in the average range,” says Hanna. “That’s tremendous!”
When he’s not studying or playing sports — basketball, wrestling, and, as a good Michigander, football — Sufyan thrives on family time with his sisters, Fatima, 6-year-old Janeen, and 3-year-old Ayah, mom and dad, Mohammad. That can be as simple as hanging out on the patio with a cup of cocoa, or going to an orchard to pick apples. “He loves just all of us being together,” says Hanna. She believes that closeness with family, and the importance of community at large, may be, at least in part, a result of Sufyan’s special needs opportunities. “So many people have reached out to him that he has this wonderful sense that there’s a big community of caring people out there,” she says. “We’ve encouraged him from kindergarten onward that he should never hesitate to ask the teacher if he doesn’t understand something. So he’s not afraid to ask for help. As a result of all those things, he’s very positive and caring himself. I don’t know that he would be the same if he hadn’t had a bit of a struggle.”
Sufyan hasn’t decided on a career path yet, but he does know he wants to live in Ann Arbor and go to the University of Michigan. Perhaps most importantly, in all the vocabulary he’s learned, one word is missing: limits. Sometimes, he even thinks about being a football player. After all, he’s already tackled some pretty big stuff and come out on top.
Mom Hanna Nimer with her children, clockwise from top left, Sufiyan, Fatima, Ayah and Janeen, right.