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Parenting Special Needs Kids
By Jean McAulay

Arielle Senzon has just turned 3 and she’s doing all sorts of things her parents were told she’d never master. Although she couldn’t see at birth, she is now learning to read. She makes eye contact and can smile. She’s even learning to crawl.

“I feel so lucky to have her and wouldn’t change her for a minute,” says mom Susan Senzon, D.C. Susan used to practice yoga or meditation to feel more present in the moment—being with her daughter provides that sense now. Throughout her pregnancy, Susan did everything she could to prepare her body and protect her baby. She got adjusted regularly, exercised, ate very well, took appropriate supplements and even avoided using her cell phone. “I totally put this bubble around myself. I was so excited,” she says.

In her ninth month, she was rear-ended in a minor car accident. Although Susan and husband Simon, also a chiropractor, were seeing a midwife and had chosen not to use ultrasound during the pregnancy, Susan agreed to one while being checked for injuries at the hospital. “They could see that our daughter had a very special brain and no one knew what to make of it.”

The test was followed up with a Level II ultrasound and the results confirmed the Senzons would face some special challenges. “The medical doctors started throwing all kinds of terms around and after several months we did finally get a diagnosis,” explains Simon. “We discuss the specific diagnosis with doctors as needed, but to others we just say, ‘Arielle has a very special brain.’ We want people to think of her potential, not whatever limitations they might assume or read about with a certain diagnosis,” he says.

“For parents of kids with special needs, the greatest joys come from learning to appreciate every little advance your child makes,” says Robert Naseef, Ph.D., a psychologist with Alternative Choices in Philadelphia and a parent of a child with special needs.

“Kids with special needs are just kids in many ways, but their lives are more complicated and difficult as well,” he says. “Having a child with special needs is a life-altering event. Families often wish others understood that—that they knew how different, and often how challenging, their lives are.”

New hurdles to navigate
Having a child with special needs challenges a family on many levels. It often sets people on an emotional roller coaster of anger, guilt and grief; requires parents to make numerous, often confusing, treatment decisions; consumes significant financial resources; isolates parents and children from many typical activities of childhood, and is physically exhausting.

“If you’re at the beginning of the journey, it can be very difficult to talk about,” Naseef says. “It’s like the stages of grief in many ways. Parents feel shock and numbness and perhaps anger at the injustice of it all. Mothers, especially, sometimes blame themselves or feel they should have done something differently. Over time, most throw themselves into learning everything they can to help their child. Eventually, most parents learn to accept their child as they are and come to some sense of peace with the present. They learn that they can still have a good life as a family—it might be different and harder than they expected—but they can live fully.”

“Honestly, I still have moments of grieving for what might have been, but they are fewer and less severe now,” Susan says. “We’ve had to redefine our expectations. We have a lot of precious moments and a lot of joy—it just doesn’t look like the picture most people would think of. The littlest milestones are huge for us.”

Chiropractic philosophy meets medical intervention
One of the greatest challenges early on for chiropractic families with special needs children can be acceptance. “There is this cognitive dissonance with chiropractors that makes it hard for them to accept that there’s a problem,” explains Joan Fallon, D.C., a chiropractic researcher and author whose New York state practice is comprised primarily of children with special needs.

“Children of chiropractic families are often diagnosed later because the parents aren’t as willing to admit there’s an issue,” Fallon says. “They feel it can’t happen to them. They feel this disparity between having done everything naturally and now being confronted with a child who has problems. The two aren’t mutually exclusive. I remind them that chiropractic philosophy allows for limitations of matter and that limitations of matter are just that.”

Susan Senzon knows that firsthand. “I felt at first that others in the chiropractic community would feel that my body had let me down. But sometimes things just happen. You can do everything right and things still just happen.”

Chiropractic families may also feel almost ashamed of needing to rely on medical interventions to help their children. “Parents sheepishly come to me and almost confess needing to use medical interventions. I’ve seen the embarrassment people feel in this profession when confronting an issue like this,” says Fallon.

“I had this impression that ultrasound was this awful, terrible thing,” Susan says. “I understand the argument against it, but the benefits can be great. I wish I hadn’t felt so guilty about having it done. I was so glad we had a few weeks to prepare for our daughter’s needs.”

Chiropractic philosophy and care helps keep many special needs children (even those who don’t have chiropractors for parents) in top form. Fallon notes that, particularly among many of the sensory integration issues that are common today (including ADHD and autism), chiropractic adjustments can help the nervous system work more effectively.

Chiropractic plays a huge role in Arielle’s care. “We feel her immune system is so strong because of regular chiropractic care. We have a close relationship with Dr. Donald Epstein and we made a commitment to get Arielle to him as much as possible. In her first year alone, he adjusted her about 60 times,” Simon says.

“Our chiropractic education gave us tremendous information to be prepared to handle something like this,” Susan says. “We have a fuller understanding of what’s going on and felt armed and ready to be in this situation.”

Striking a balance
The Senzons feel they have also reached a good balance with using the medical interventions Arielle needs to survive. “I really have a different outlook on medicine than I did before,” Susan says. “We deal with a very delicate situation. We need to keep in contact with Arielle’s medical doctor. We have a long-term goal of getting her off all medication. But right now she needs it to live.”

“We have a healthy skepticism,” Simon explains. “Most families who don’t have a chiropractic background just do everything their doctor says and they have their kids on so many meds. We’re very minimalist with what we do medically.”

The Cousineau family of Michigan follows a similar approach. “We’ve refused a lot of tests through the years,” Hank Cousineau, D.C., says regarding health care decisions for his daughter Courtney, 24. “We didn’t fit into the system totally. There were things the medical doctors wanted us to do that we just wouldn’t. Other things, like patching a hole in Courtney’s heart, were apparent we had to do.”

“The adjustments she received, her nutritional program and her overall level of fitness before her heart surgery were phenomenal. The doctors told us afterward they expected her to be in the hospital 60 to 90 days. She was there only seven days. The doctor told us he’d never seen a child with Courtney’s problem who was so strong and had such a high level of health,” Cousineau says. “That had a huge amount to do with chiropractic.”

Helping marriages, families thrive
Families of special needs kids do face some unique challenges, although many find the struggle can bring their family closer together. “When we first met with our neurologist, he said 80 percent of couples with special needs kids end up divorced,” Susan says. “I feel fortunate that Simon and I have a very strong relationship. Our communication has always been excellent. We’ve had to create balance. He has become the breadwinner and I’ve become the caretaker. It’s been humbling for both of us.” Susan works in the couple’s Asheville, N.C. practice one afternoon per week.

“It’s widely believed that the divorce rate is higher for families with special needs children, but there’s no conclusive, empirical evidence,” Naseef explains. “What there is empirical evidence of is that the family is under greater stress. Parents may feel their marriage is more fragile because of the stress.”

Naseef also points to significant financial strain due to higher medical bills and co-payments, increased use of medical services, maxing out on health coverage and needing to make physical modifications to the home. “Even just hiring a babysitter will cost more because the person has to have greater qualifications,” he says.

“I wish families better understood they don’t have to lie to themselves about how hard it can be to care for a child with special needs. It’s OK to talk about it out loud and also to know it will get better,” Naseef advises. “As powerless as we can be to make the problems go away, you learn you have power over your relationship with your child and relationships in the family. That’s where our impact really can be. That can help the child’s development and help the family as a whole.”

In the Cousineau family, for example, Courtney’s sisters actually taught her how to sit up, walk and talk. “Working together like that tied the knot inside them tighter and gave all the girls a strong message about how the body works and what an amazing piece of equipment it is,” Cousineau says. His two oldest daughters are both chiropractors and Life University alumnae.

Moving on, enjoying life
Although special needs families face significant challenges, they often also experience uncommon rewards. Many say they have become better parents and more patient, more appreciative people as they have stretched to meet their child’s needs.

“I always thought we’d have a most special and unique baby because of the people that we are and all the things we do to take care of ourselves—and now we do, literally,” Susan gushes. “I would hate to think people feel sorry for us because there is such tremendous joy in our life in celebrating the very little things. I treasure the closeness we have as a family.”

Cousineau concurs, “We don’t know why this happened to us. We don’t want to know. We have the honor of taking care of this child. Our job is to accept that honor—to enjoy it, live it and love it.”