On the campaign trail, Gov. Sarah Palin proudly holds her baby son, Trig, who has Down syndrome, and promises “to help families who have children with special needs.” You don’t have to know trigonometry to realize what that adds up to.
Gov. Palin addressed that issue in a speech today in Pittsburgh, Pennsylvania, to groups that deal with special needs. " ... [T]he truest measure of any society is how it treats those who are most vulnerable," she said, and brought up another way special needs has affected her family: her sister Heather has a 13 year old son with autism. Gov. Palin proposed three ways to better serve families with physical or mental special needs children:
• School choice for parents, with federal funding that will follow the child.
• The full funding of government's obligations under the Individuals with Disabilities Education Act
• Strengthening the National Institutes of Health, to work on long-term cures and providing better information to families
Gov. Palin also urged extending the Vocational Rehabilitation Act to teach special needs children the skills they need to live independently. But having a special-needs child not only requires expensive, life-long therapy for the child — it requires marital therapy as well.
A little-known fact is that the divorce rates for parents with special-needs children is tragically high. According to the documentary Autism Every Day, the divorce rates for these parents soar to as much as 80 percent. A recent study in The Journal of Consulting and Clinical Psychology revealed that parents of a child with attention deficit hyperactivity disorder are nearly twice as likely to divorce by the time the child is 8 years old.
And when I contacted various special needs organizations to get a figure for divorces, spokespeople were reluctant to give a firm number, but acknowledged that it’s “very high.”
That is why over 90 percent of women who discover that they are carrying a baby with Down syndrome choose not to continue the pregnancy because of the potential stresses on the family.
Gov. Sarah Palin and her husband, Todd, will hopefully stay married and defy these odds. But experts caution that the family dynamic requires one person doing more of the heavy lifting, and that usually falls to the mother.
So what is the formula for families to forge together vs. falling apart?
The caregiver — usually the mother — will feel like a twister has ripped through her home and heart, literally uprooting her life. To survive is a daily struggle; to thrive requires a candor between husband and wife that drills into the deepest crevices of their beings and leaves no emotional stone unturned.
“Each parent must painfully realize that the problem will not go away, and how they deal with that is essential to making the marriage work,” says Dr. Katie Eisenstadt, a therapist who has been working with special needs families in White Plains, N.Y., for almost 30 years.
Just recently, Jenny McCarthy spoke to Oprah about how her husband dealt with his pain over Evan, their son, and his autism. He shut down, she said, which led to their divorce.
“I felt very alone in my marriage,” she said. “He never sat down with and said, ‘What did you find out on Google?’ There was never that connection of wanting to know and being there.”
Her resentment is common among mothers who often do all of the relentless, exhausting, all-consuming legwork of finding medical information and therapists for their child.
“The mother feels abandoned by the spouse, who gets to escape to work when she can’t,” Eisenstadt notes.
“But the father may now be working two jobs to support the extra therapies, which then puts a strain on the couple’s relationship, since they have less time together.”
An added stress factor is that human nature wants to “blame” someone for what happened and these emotions are harder to process. As Eisenstadt says, “It is easier to blame the relationship instead of fate.”
Finessing this issue requires the diplomacy of a U.N. ambassador. Often the mother must decipher language barriers to access her husband who rarely wants to be burdened with her day to day accounts of trying to battle insurance companies and find new therapies. The men start to tune out instead of sharing the struggle — or at least the wife feels that is so. The husband may be listening, but his life still has time away from the special needs reality and he wants to share those parts as well.
Connie Iddings, a mother of four whose 21-year-old son, Matthew, has severe dwarfism and other disabilities, says her husband, Dan, recently reached a breaking point. Their son no longer would be in school — a break — and was home fulltime. “He couldn’t get over the fact that his goals in his career weren’t going to happen and there had been too many sacrifices,” she says. When they got separated, Iddings was initially terrified.
When you have a special needs child, you are on duty 24/7 and even a trip to a supermarket or gym is considered a treat.
As a soon-to-be divorced woman, Iddings found her own solutions. “As moms, we don’t look for help because we are the helpers. But now I realize I don’t have my husband as a support and had to utilize other avenues,” she says.
Now Iddings uses the Internet — including Firstwivesworld.com — to “find a community of people to bounce ideas off and find resources.” She asks friends and family to possibly commit a day a month to help with groceries or babysitting.
The internet has truly been a lifeline for her, especially since having a special needs child often makes the parent more homebound. “We don’t get a lot of invitations to come over for dinner,” she admits. But while at home, she is not alone in her experience thanks to the internet.
In retrospect, Iddings, like others, realized that she could have done this earlier, reduced some of her stress, and “normalized” her life by reaching out.
Bonnie and Sam Marks, a New York couple whose 23-year-old daughter, Sarah, has a severe form of spina bifida, have successfully managed their lives to be fulfilling and loving by following that formula. When the doctor told them the diagnosis about their daughter, Sam told his wife, “We are in this together.”
That unwavering support meant everything, especially in the early years when Bonnie was consumed with her daughter’s care around the clock. They also wisely created pockets of time where they could vent their pain and grief to each other. “Eventually that helps you both have empathy for each other instead of being polarized,” she said.
Bonnie also credits a social worker at the hospital for giving her “permission” to delegate and compartmentalize, with compartmentalizing being the magic elixir.
“She told me that I also had to give time to my son Aaron (now 26) and my husband and not feel guilty about it,” she says. “Having someone say that released the pressure.”
Marks says that couples have to have alone time separate from their parental responsibilities, whether to go on hikes, play tennis or travel.
Just recently they took a holiday trip to India without their daughter. “She had wanted to come and I told her that the dietary problems wouldn’t make that possible,” said Bonnie. “We have learned that we still have to make time for us as a couple for the health of our family.”
Any family that deals with special needs children eventually accepts their fate and finds a daily rhythm. But looking for meaning as to why this happened also drives them to unexpected places. Because her daughter had brain development issues, Bonnie Marks became a neuropsychologist.
Michele Pierce Burns was a Harvard educated career woman on the fast track in the banking world. Then she had an autistic son, Danson, now eight. The stress derailed her career and her marriage. To manage all the stress, she started doing yoga and found a whole new direction in life. Now remarried, she is a master yoga teacher for parents of autistic children and has been trained to also help autistic children. This March, Danson: The Extraordinary Discovery of an Autistic Child’s Innermost Thoughts will be published.
The book explores Michele and Danson’s “non-verbal conversations typing and writing together after he wrote his first word at age 7.”
“Life is full of surprises,” she says. “I thank my son for bringing this new life to me.”
Still, as Gov. Palin said, "The parents of children with special needs ask themselves every day if they are doing enough, if they are doing right by their sons and daughters."
As Tim Shriver, the president of the Special Olympics, told me, “having a child with special needs doesn’t create serious problems in a marriage but may magnify them.” It can also focus the lens on what really is important in life and frees people from being afraid of vulnerability.
Too often, he says, people greet families with special needs children with sorrow, lamenting how hard and disappointed they must be. “More have to ask what joys can come from these children and how that affects your outlook on life,” he says.
As my friend Margot Weinstein, who inspires me with her grace and wisdom, says, “the experience teaches you about the power of love and acceptance. You truly appreciate the joys of life more fully.” Sometimes, she admits, there are harder days than others. But the power of love is a force that elevates any challenge.
Indeed, Gov. Palin echoed those emotions in her speech today when she spoke about her son Trig: "In some ways, I think we stand to learn more from him than he does from us. When we hold Trig and care for him, we don't feel scared anymore. We feel blessed."
And she will learn, since Trig is still a baby and the real challenges will start in a few years. Her speech today about what she and John McCain propose for special needs children is a strong start in helping. But as always it's a matter of finding the funding. With Alaskan oil money Sarah Palin raised the state funding per special needs child from $27,000 a year per child in 2006 to a projected $74,000 per child in 2011.
Perhaps she will create a similar pipeline for the funding of special needs programs on a national level, and that would truly be a bridge to somewhere.