When A Meltdown Lasts Five Hours, A Mom Needs More Than A Break
05/09/2013 - 17:24
Rabbi Rebecca Schorr
Rabbi Rebecca Schorr
Rabbi Rebecca Schorr

I need a break. Every mom says that. But my doctor also says this about me.

And it’s no wonder; a 2009 study found that mothers caring for children with autism experience chronic stress comparable to combat soldiers. Combat soldiers.

My day starts early. And not because I am a morning person. In fact, according to family lore, my ability to sleep until 9:30am, which emerged early in my infancy, was one of the deciding factors in my parents’ decision to gift me with a sister just after my second birthday. God, the ultimate jokester, sent me a son whose circadian rhythm has him rising sometime between 4:30 and 6:00am, depending on time of year. Which means that I am rising sometime between 4:30 and 6:00am.

During the hours that the kids are at school, I squeeze in errands, chores, and any phone conversations that require my full attention. Because once the bus drops off Ben at the end of the driveway, there is no telling what the remainder of the day will be like for us.

A therapist comes to our home two afternoons a week to work with Ben on his behavior, social interactions and coping strategies. Visits to other specialists and the occasional haircut round out the rest of the afternoons. Dinner, shower and bed for Ben soon follow. And then I have some time to spend with our other kids as well as get to any other housework that I hadn’t been able to complete due to conflicting events such as meltdowns. Meltdowns that can last up to five hours. Oh, and there is a lot of paperwork and phone calls with various doctors and insurance agencies to fill my time as well.

You’d think weekends would be a break. You’d be wrong. They are even harder. Without the structure of the school day, Ben suffers from perpetual boredom. Our weekends are filled with his relentless needs and behaviors. There is no break from his meltdowns and constant desire for us to entertain him as he is unable to fill the hours of the day on his own. We often find ourselves relieved, come Sunday afternoon, that Monday is just around the corner.

Some months ago, at my annual physical, my doctor pressed me when I complained of fatigue. Instead of giving me “motherhood is tiring” or some other empty platitudes, she gave me a prescription: for self-care. “You must carve out some time for yourself to exercise,” she said. She explained the physical and mental tolls that stress cause and warned that it would get worse, not better, if I didn’t take better care of myself. Citing recent studies of the long-term health risks for caregivers, she then gently asked if we had looked into respite care -- short-term termporary care provided to people with disabilities so their families can take a break from the daily routine of caregiving – as a way to assist me in my role as caregiver, mother and wife.

An article in the March 2013 issue of the Journal of Autism and Developmental Disorders confirms the information my doctor gave to me. Researchers found that parents of children with autism were less stressed and had improved marital quality with each hour of respite care received. The study seems to suggest a relationship between respite care, stress reduction and quality-of-life improvement.

But finding someone to care for Ben is not easy. While moving onto a street with three teens would have made other parents think “instant babysitters” and start scheduling regular date nights, Ben’s autism is much more than the average babysitter is able to handle. Parents of kids with special needs are less likely to leave their children in the care of others for a variety of reasons including shortage of trained caregivers, limited resources and lack of nearby family. I fit this profile.

Still, I am managing so far to follow my doctor’s advice. I exercise almost every day and attend a weekly support group. And the four weeks Ben spends at Round Lake Camp during the summer provide the respite that our entire family needs. It gives us the ability to interact as “normal” families do and for my husband and me to reconnect as partners rather than caregivers. My doctor was right; respite does everybody good.

Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow whose work appears regularly on the Rabbis Without Borders blog and Kveller.com as well as a variety of other online sites. Writing at This Messy Life (www.rebeccaeinsteinschorr.com), Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Follow her on Twitter @rebeccaschorr

 

Comments

I am so lucky to have a husband who has been very involved with our son from the start of his life. He did everything I did when Z. was a baby except nurse him! Z. does not have Asperger's but rather is closer to the other end of the Autism Spectrum. Life hasn't been easy and has included having to move to different states in the search for the best school program and services for our son and for our daughter. We have now lived in Michigan for almost 26 years. Now that Z. is an adult -- God willing, he'll celebrate his 33rd birthday in November -- and although he no longer lives with us, we are still very involved in our son's life. He moved to a shared residence (a.k.a. a "group home") three years ago, and has thrived and continued to develop language, which was previously quite minimal and not always easy to understand, and his behavior has improved tremendously. The company that provides his care follows a method called "Gentle Teaching." I suggest you check it out. It is very specific and requires intensive training on the part of the staff, but it works!!!!! (In a few weeks, I too will receive training in the method.) Michigan is, to my knowledge, the only state that offers special ed. through age 26, and helps with providing respite care. I don't know how other parents have dealt with the impact of such a disability on a younger sibling, but she too is now an adult and lives out-of-state. She has been deeply effected by having a family member with such strong needs and has chosen not to be in touch with her brother. She still shows evidence of resentment over all the years we had to expend most of our energies and time on her brother. At one point, I was sure the best thing would have been to give Z. up to either foster care or adoption, but my husband convinced me to hang in there. I'm glad we did, but the negativity of our daughter regarding her brother was a terrible price to pay.

Combat soldiers? No wonder I am so tired!

GREAT post! Our post traumatic stress is real. It's hard to take a break, but even harder to get one.

Agreed. I didn't realize that other parents were feeling as overwhelmed and stressed as I was until I read these reports and articles. Even just knowing that I am not the only one makes a difference. And while exercise is not as much of a respite as I need, it is making a real difference in my overall health.

Hello. I am also a parent of two now youngmen with aspergers syndrome. Nowhere in your article do you make mention of the boys' father. Is he not in the picture? Does he have nothing to do with the boys? Has he unfortunately passed away? Why is everything simply on your shoulders? Why is there no shared responsibility?

One of the things that we did and still do is make sure that the other parent, on the weekends since the hubby works of course, spends the days with the boys. Not only does he get to know his children but it gives me the break I need, even if it is going to the food store alone. I also use this time to do the things I need for myself, haircuts, nails, exercise etc.

I simply don't understand why you have no support system at all? As a Rabbi your job is to teach others to care for themselves and their families, even figure out how to provide support systems for those that need it. Why not for yourself?

As I mentioned in my piece, my husband is indeed in the picture. However, as I am home with Ben (and our two non-spectrum kids) full-time, these responsibilities fall to me. Of course he spends time with the kids and "gets to know his children." But, as is the case with an overwhelming majority of households and for a variety of perfectly understandable and valid reasons, the primary caregiving is done by one parent.

Comment Guidelines

The Jewish Week feels comments create a valuable conversation and wants to feature your thoughts on our website. To make everyone feel welcome, we won't publish comments that are profane, irrelevant, promotional or make personal attacks.

Add comment

The content of this field is kept private and will not be shown publicly.
By submitting this form, you accept the Mollom privacy policy.