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Does Having a Child With a Disability Make It Harder to Co-Parent?

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Parenting is best shared, and sometimes it even is.

The balance between child-rearing and breadwinning is a challenge for any family, whether or not both parents work outside the home, if parents are married or divorced, if they are single, gay, or straight. When childrearing becomes something other than straightforward, that balance -- never easy to achieve -- can become unsustainable.

Danielle and Anthony met as junior associates in the corporate practice of the Boston firm where they both landed after law school. Pretty soon they were living together, and in 2001 they married. "I loved the long hours," Danielle remembers, "and I loved the travel. I loved the deals. I just really loved my job."

Jonathan arrived nine months later, and being highly competent, Danielle and Anthony made it all work. (I've changed the names in this family at Danielle's request.) They had a full-time nanny, and someone to clean, do laundry, go to the grocery, and cook. Danielle's star was rising faster at work than Anthony's. "I often worked until midnight, I travelled a lot, and was working at least 60-80 hours each week," she said. Fortunately, Anthony was not only a good attorney but also a great dad and partner. "Anthony's amazing with the kids, and is super patient with them," so it all worked out.

But to be fair, Danielle was the point guard of the parenting team. "I made the appointments and did the bulk of the parenting," she said, "and partly because I'm a control freak, I was perfectly happy that way."

Looking backward, Danielle says she realized there was something going on when Jonathan was about a year old. "He didn't smile, and he didn't like being held, and he would push you away," she recalls. His speech was delayed too, although Danielle wondered if this was because their nanny spoke to him in Spanish.

Danielle was online looking for a diagnosis, and pretty soon she had him evaluated by the town's Early Intervention program. A speech therapist spent a few months working with Jonathan before deciding he was developing normally and didn't need services. It took until he was three and a half before Jonathan was diagnosed with Asperger's syndrome, a condition on the Autism spectrum.

Now the appointments ramped up -- physical therapy, occupational therapy, speech therapy -- and Jonathan started going to a school that could provide for his significant needs. Danielle kept working, adding coordination and worrying about Jonathan's care to her to-do list.

About the same time Jonathan's brother was born, and still Danielle kept working.

But a few years later, during a 'feedback,' session with Dr. Ann Helmus, a neuropsychologist in the Boston suburb of Newton who specializes in children on the Autism spectrum and those with learning challenges, she heard something unexpected: often the siblings of children with significant health concerns end up having psychological issues because their parents are so wrapped-up in caring for the sick child that the "normal" child is neglected.

A year and a half ago, after calculating the budget numbers and determining they could do it, Danielle decided to leave work. Now, she is surprised she made it in the workforce as long as she did. "All of the moms of children on the [Autism] spectrum that I know left work as soon as their child was diagnosed," she said.

Leaving work, "felt really good in many ways," she said. "I can just focus on the house and the kids. I'm doing more household things that I used to leave for the nanny."

But to the extent that there was a modicum of balance in the parenting responsibilities, it disappeared. Anthony's job: supporting the family. And Danielle became the full-time mother of a complex child with Asperger's and a typically-developing younger son.

When Jonathan's preschool said he was doing great, it was up to Danielle to worry that he actually wasn't getting the support he needed to excel, and to team up with Helmus to push the school to provide more services. It was Danielle's job to challenge "doing great."

"Anthony always said, you're really good at this. You're amazing at this," Danielle said of the disparity, "I don't feel like he should be doing more. This is my role, and he has his role."

Which was supporting the family of four on a single income, and even that responsibility came with it's own disparity of perception in the eyes of the no-longer-working Danielle. "Financially, it's a big burden," she says. "And it's not fair that he has to bear the burden alone, but he's never given me a hard time about it."

Helmus acknowledges that the cost of caring for a child with special needs - health insurance never covers needed services - often accentuates the role distinctions, as the parent with the most earning potential is the natural one to work more to support the family and the additional cost of therapies. (Full disclosure: Helmus is my wife's boss.)

"I'd say that maybe 70 percent of the time, the family system has figured it out, and everyone has a role, and it's working," Helmus says, "but in 30 percent of the families I see patterns developing that are really dysfunctional." (Out of respect for patient confidentiality, Helmus and I did not discuss Jonathan or his family.)

Helmus has seen families where the full-time parent establishes her (and it is usually the mother) identity and self-worth around her role as caregiver to such an extent that she becomes invested in the child not getting well. Another pattern Helmus has seen is for the working parent to minimize the child's needs, and by extension, the caregiving parent's extraordinary efforts on behalf of the child.

Helmus believes that what's best for the child, and what's best for a marriage, is for the parenting to be shared, at least a bit. Her suggestions include:

  • At least one afternoon or one weekend day each week, the breadwinning parent should do everything for the child with special needs so that parent has firsthand knowledge of what it's like to be with their own child. "By doing that, the spouse who isn't the primary caregiver can appreciate what it's like for their spouse five days a week, and also understand why it's important for that spouse to pursue their own interest and get out of the house and feel like a whole person so they can get back in the ring on Monday morning," Helmus advises.
  • Both parents need to interact with the professionals. Helmus will reschedule feedback sessions if one parent can't make it.
  • The breadwinner has an important job too. "Sometimes I see parents who are resentful that their spouse doesn't do enough with the children, and I'll point out how expensive speech therapy is," says Helmus. "Each person needs to be valued for their role."

Danielle says she doesn't miss the law, but the transition from lawyer to full-time mom has been challenging. "You certainly feel a little bit less important, and it's taken a bit of time to figure out what's important about me and who I am other than a mother raising two kids."

The financial dependence is also tough to swallow. "Back then I could drop $200 on a pair of shoes without thinking about it. And Anthony didn't have anything to say about it," she says. "Now I couldn't do that. But then again, shoes don't really matter to me right now."