Family burdens: In our own words

Thanks to the readers who commented on the financial and family burdens they face while raising their children with special needs. In your own words, here are some of the visible and invisible costs we bear along with the rewards of raising our children:
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"With our Aspie in particular, we never know which day the school will call to tell us he's just done something inappropriate or violent. We also have three days a week with therapists coming into the home. So my husband and I both have chosen to work part time, where, in a family of our size, we fall just inside the SSI radar with two diagnosed children. (If we only had one we wouldn't qualify.) This way, we have a chance of being much more available to deal with issues and time tables.

But because of our two we are also not 'soccer parents,' and won't be. We can't commit to giving our non-autistic son what many of his peers have--baseball, basketball, other team sports with practices and places to be and practices to meet. I think that's a cost that's hard to quantify."

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" As I was working this morning,I wondered if society as a whole understands the impact of autism on their financial burden (it was the economist in me this morning...ie. if 85% of our marriages end in divorces, then that means that a large amount of our families are on welfare and thus needing public assistance, WIC, etc...) So therefore, the pennies that society pays for services is really 'chump' change in compared to everything else. "

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" For us, having a young adult with a developmental disability means more: more laundry (he often wets the bed and is messy), more hot water (a hot bath is a favorite calming activity), more gas (a ride in the van is a favorite outing), and more child care for longer; barring a miracle, our son will never be able to be left without an adult caregiver. A huge extra expense too is dental care. Our son needs general anesthesia even to fill a cavity. Ugggh. Notice that I listed no special equipment or therapy in my list; just survival takes extra money."

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"Another expense for families is the severe lack of care options for our loved ones, especially after age 12. Many, many parents (usually the mom) want to work, are able to work, but cannot find reliable care.....at any cost.....for their child with a disability so they end up at home. I worked full time when our children were small and I have terrible memories of days gone bad when sitters would not show, etc. etc. In this area, care often runs 9 to 15 dollars an hour, again, when you can find it, so in many cases when the parent does find work, the net earnings are minuscule.

Or, worse for children, many special ed parents take jobs in schools such as staff assistant because the hours are the same [as student school hours]. These parents end up being truly burned out as work and home life start to look the same."

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Once again, my appreciation for these comments. They add a personal touch to the findings of a recent study, which I summarized in my post Financial Burdens of Raising Children with Disabilities: Policy Wonk Edition.

Not so pretty: New National Study on Financial Burden of Raising Children with Disabilities

What impact does having a special needs child have on a family's financial well-being? This is a frequently debated question with limited data to lead the way. However, a recent national study of the financial burdens on families raising disabled children sheds some important, and sobering, light on the subject.

"Material Hardship in U.S. Families Raising Children with Disabilities" is a study recently published in the journal Exceptional Children and written by Susan L. Parish and a few of her colleagues at the University of North Carolina -Chapel Hill School of Social Work. These researchers analyzed data from a 2002 national survey, using specific economic hardship measures to compare families with and without children with disabilities. The full study can be found via a link on Dr. Parish's web site here A summary of the research can also be found at the UNC School of Social Work Fall 2008 Contact magazine article link here. Below is the "Cliff Notes" version.

The study compared families below and above the federal poverty line (a controversial concept itself outside the parameters of this post), on these specific measures: Stability of telephone services, medical hardships, food hardships and housing hardships. The study verified what we likely already know: families at or near the poverty line who are raising disabled children face severe hardships in all these areas.

However, the research also showed that "a substantial proportion of middle-class families raising children with disabilities experienced material hardship." (p.88). The researchers were surprised to find that many higher income families are also struggling. Such families, due to their income levels, are ineligible for assistance and support available for lower income families. Yet, they still incur extra expenses that do not burden other families with "typical" kids.

I think we know what some of these costs are - therapies ,therapies, therapies, durable equipment, special medicine, educational tools, adapting homes for special needs, medical costs. And there are also lost wages of parents who need to care for children, higher costs of recreational opportunities and child care, and more.

What does this mean? It means that many middle-class families raising children with disabilities are running out of food at the end of the month, have to choose between therapeutic interventions and paying their phone bill, must move frequently because of financial problems [and our kids need stability - ouch!], and forgo preventative health care because they can't afford it. What is so frightening is that this study was conducted BEFORE the current economic downturn.

POLICY IMPLICATIONS

What are the policy implications? Instead of reporting what the researchers suggest I'm asking you readers to recommend what can and should be done. My next post will discuss the journal article's policy recommendations but I'm curious about your take. Also, please share how having a child with a disability impacts your families financial well-being. I also know I left out some of the extra costs we families incur.

Workplace Disclosure and Children with Special Neeeds: A look at some research

Disclosure - my last post talked about how and when to inform people in the community about your child's disability. But what about people in the work place? Do you tell co-workers and Human Resources about your child's disability, and if so, when? Before you are hired? After? And how much do you share?

For those of us with less "traditional" employment, is our decision to work outside of the nine-to-five work world our way of dealing with the disclosure dilemma, by essentially avoiding it? How many of us work at home to optimize flexibility? And in doing so, are we letting potential employers off the hook?

Researchers at the Portland State University Research and Training Center on Family Support and Children's Mental Health have studied what they coin "Dilemmas of Disclosure" for both parents and human resource professionals. Their findings are summarized in the power point presentation: Caring for a Child with a Disability: Dilemmas of Disclosure for Parents and Human Resource Professionals.

This presentation includes some telling quotes from parents on the disclosure issue:

“Honesty with my employer. That has been the main
strategy and working very, very hard when life is
going well to make up for the times when I have to
be out from work.”

“I do try to be up front with selective people about
this. Some people I tell about my son’s emotional
disorder; to others I just say that my son has a chronic
illness that sometimes requires hospitalization.”

“All I’ve been able to do is explain to my employer
the reality of my life with an autistic child. Some have
understood and others have absolutely not!”

These Portland State researchers have also written a comprehensive article on the topic of workplace supports (and the shortage of them) for families who have children with special needs. This research in outlined in Disabilities and Work-Family Challenges: Parents Having Children with Special Health Care Needs on the Sloan Work and Family Research Network web site.

Fellow moms, please weigh in on this. If you are employed at a work place, how do you deal with the disclosure issue, along with the need for flexibility? Those of you with alternative work arrangements, how big a motivation is autonomy and flexibility? And for those moms who currently do not work "for pay" (because we ALL WORK) - would you be more willing or able to work if there were comprehensive protections and supports for employees who are parenting children with special needs?

They say I don't pay attention but I said "No, no, no!"

I have a dear friend I'll call "K" who is a 50-something physician and mother to two teenage boys. Ever busy, K nonetheless prides herself on being hip and keeping up with the latest music and fashion. K recently discovered Amy Winehouse, a young "white soul" singer from England with a smash album, Back to Black, with one of K's favorite songs - Rehab , with the chorus "They said I had to go to rehab but I said no, no no."

The other day K dashed into Borders to buy Winehouse's latest CD, on her way to an hour's drive on the freeway. She went to the Amy Winehouse section, grabbed a CD that listed Rehab as its first song, got on the freeway and popped her CD into her car player. She heard the familiar Rehab introduction and waited eagerly to sing at the top of her lungs. And waited. And waited for words that never came. That's when K looked more closely at her CD and realized she had bought the "Smooth Jazz Tribute to Amy Winehouse." Words - not gonna happen.

K told me this story and played her CD for me. True disclosure: I am not a smooth jazz affection ado. After I stopped doubling over in laughter, our conversation went like this: "I can't believe they put the Smooth Jazz tribute CD in the Amy Winehouse section not the jazz section." "Yes, that is like putting the 'Kidz Bop sings the Beatles CD' in the Beatles section not the children's section." "I should go back to borders and tell them that, but I'm too embarrassed." "Don't be embarrassed, just do it." "But, really, I can't believe they put it in the Amy Winehouse section."

K is like most of us, too busy doing too many things to pay full attention to one thing at a time. We get embarrassed and hesitate to share our goofs with those outside our close circle, which is why I suspect this kind of thing happens to folks in midlife more than we know. My suspicions are confirmed by Chathryn Jakobson Ramin, author of Carved in Sand: When Attention Fails and Memory Fades in Midlife. This fascinating book, written in a fun-to-read style, explores the role of neurology, biology and stress in midlife forgetfulness and diminished attention. The book details the author's various interventions to combat her own "spaciness" and offers suggestions for improving your memory and focus. Ramin also takes a riveting and at times hearbreaking look at the factors that can contribute to Alzheimer's, along with current research aimed at warding off its effects.

Cathryn Jakobson Ramin's web site has some good information on midlife memory and attentionissues, including quizzes on how your particular brain works. This ABC News link has a chapter excerpt. I've listed an Amazon link for the book in my sidebar. If you don't have time to read, it is available as an audio book. For locals, you can try to find it at the Camas Public Library, where I got my copy. Now, if I can just remember to return it.....

Our brains ,they are a changin'

Inventing the Rest of Our Lives: Women in Second Adulthood is an excellent book by Suzanne Braun Levine that focuses on the changes in women’s minds and emotions, as well as bodies, as they enter their late forties and beyond. Levine calls the transition women make in their late forties and fifties a” Second Adolescence.” This idea hits home for me, since I have a teenage boy at home.

Brain researchers have found that part of our brain functioning related to memory does start to decline at this time – that would explain why I can never remember the names of Sayer’s “paras” (instructional aides). However, our brains also begin a “growth spurt” in myelin during midlife, most specifically between ages 45-50. Myelin is within the portion of the brain responsible for emotional learning (the medial temporal lobe). This section of the brain helps us in “making judgments, finding new solutions to old problems, and managing emotions – not sweating the small stuff” (p.14).

Adolescence is the only other time in our brain’s development that myelin increases. Because women experience an increase in myelin at the same time as the hormonal changes of menopause, this brain growth impacts women more than men. Dr. Francine Benes, a brain researcher, found that there is a 100 percent growth in myelin during the teen years and another 50 percent growth around age fifty. Further research has documented brain development in both stages of lives. In fact, the book Yes, Your Teen is Crazy, by Dr. Mike Bradley, discusses adolescent brain growth at length. This is the best parenting book I’ve come across for teens, but I digress.

My next post will talk more about how midlife women are like and how we are different (thank goodness!!) from teenagers. But for now, one way we maybe are like adolescents is our need to create silly songs. So, to lighten things up I will be sharing some verses on my ditty “My Different Nest Things” to the tune of “My Favorite Things” in the Sound of Music. So, channel your best Julie Andrews:

My Different Nest Things

Hot flashes and meltdowns and long IEP meetings

Getting used to “I want to touch seven lights” as greetings

Writing in parent-teacher logs books every day

These are a few of my different nest things

Coping over time; coping among friends

A great group of moms that I am getting to know are members of the Special Education Parent, Teacher and Student Association (SEPTSA) here in Clark County. These women are mainly my age or older, with children who are in their teens or early adulthood. I feel so at ease with these women, as we discuss coping strategies and share places in the community that are particularly tolerant of our children. These midlife mothers, which I’ll call “SEPTSA moms” have a sense of acceptance and comfort with themselves and their families that I respect and strive for.

The article “Coping over time: the parents of children with autism” (Gray, D.E., Journal of Intellectual Research, vol 50:970-976) is a longitudinal study of parental coping with autism.
The study looked at how 20 families cope with raising an autistic child over time, through the use of two sets of in-depth interviews. Initial interviews took place at a treatment center for autism, and follow up interviews were conducted 8-10 years later. The researchers found that parental coping techniques changed over time. Parents in the later study used a fewer number of service providers and therapeutic interventions, and relied more heavily on emotion-focused means of coping such as social support, religion and a greater appreciation of their child’s positive qualities.

The researchers theorize that one reason for such a shift is that parents of younger children with autism have high expectations that their child would make significant progress toward “normality.” However, several years down the line when these expectations are not met, such parents turn to strategies to cope with the permanency of their child’s disability.

Gray’s study sheds light on why I feel more akin to the SEPTSA moms than some of the younger moms that I come in contact with through other groups. THE SEPTSA moms are more oriented towards the long haul, not the quick fix; the “what now?” not the "why my child?” The SEPTSA moms accept their kid’s quirks and seek ways to allow their children to experience joy in their own way. For example, Sayer is into banging on windows, walls, and tables. We have taught him to bang a drum or the floor instead. Even better, at the last SEPTSA meeting, a mom told us about a monthly drumming circle her own son enjoys that can provide Sayer with a chance to drum to his hearts content, with fellow drummers.

One positive thing about midlife is that is gives you some perspective. I can absorb the energy and enthusiasm from younger moms, without their feelings of urgency. I'm further along the "special needs" learning curve and that's a good thing.