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Autism Mothers in Need of More Time for Themselves | Autism Key
 

 
 

Autism Mothers in Need of More Time for Themselves


istockphoto.com/jhorrocks

I just read a recent article by a psychiatrist proclaiming that a family with an autistic member needs to “reassess its priorities” and consider professional help in organizing their lives.

She went on to emphasize the importance of parents and caregivers taking time out for themselves and spending time alone with their partners and other children in the family.

Free associating, I came across a 2009 article in Disability Scoop report showing mothers of adolescents and adults with autism experience chronic stress comparable to that of combat soldiers. Levels of a specific hormone connected to stress were found to be very low — as low as those of active duty military. Over time, this hormonal condition may manifest in immune disorders and other serious illnesses.

In a companion study, the researchers followed up with the same group of mothers to assess their daily lives. These mothers spent at least two hours more each day as a caregiver than mothers of children without disabilities and were twice as likely to be tired and three times as likely to have experienced a stressful event. Additionally, autism moms with outside jobs were interrupted at work one out of every four days compared to less than one out of ten days for other moms.

Yet in a true testament to the dedication of autism mothers, these individuals were just as likely to have positive experiences each day and volunteer in their communities as those whose children were neurotypical.

As for myself, my life is in a constant stage of triage as I prioritize all the important things that need to be done. If I brought in a professional to help me get organized, I know exactly what he or she would say, only I’d have to pay to hear it said. And while the idea of taking time out for myself is a great thought, the reality is that I steal my time alone by staying up too late after my sons are asleep or getting up before they do in the morning. 

In evaluating the best cities for autism in Autism Speaks’ recent list, lack of respite care was the single biggest complaint from parents across the nation. I would love to see a chunk of money from all the walks, runs, banquets and spaghetti dinners during Autism Awareness Month applied to this pressing need. Then all of this great advice about taking time out to replenish ourselves and our other important relationships would feel doable instead of like grapes hung just out of Tantalus’ reach.

As we all know, Sunday is Mother’s Day. Hats off to all of us as we soldier on.

7 Responses to Autism Mothers in Need of More Time for Themselves

  1. kristen says:

    Recently, in Columbus Ohio, the local station did a story on this exact article of moms facing the same stress as combat soldiers.
    I can speak of the stress as my twins both have special needs/autism.
    My husband is in the National Guard and totally understands…
    Only…he thinks it is MORE STRESSFUL to be home!!! And he has been the the Middle East!
    SO…Autism Mommies…march on …this is a battle is WORTH fighting againist:)

  2. Susan says:

    Thanks for adding your unique perspective!!

    Susan Moffitt

  3. Chris says:

    I DESPERATELY want to find a way to make it possible for Moms and “typical” siblings of Autistic children to get respite time away from the stresses they face daily. I have been fighting this battle since one of my fraternal twin son’s was diagnosed eleven years ago. After overcoming a nearly fatal depression from my grief, I want to find a way to “pay it forward” in recognition of all those who held my hand along the way. I have too many medical conditions to list, and could likely be a “poster mom” for PTSD. I believe that as the mom’s of these kids we have the most power to improve the quality of their lives, especially going forward into adulthood. But before we do anything else, we HAVE to find a way to escape the constant exhaustion, the never ending stress, and regain our diminishing health. I have some great ideas, but the idea of starting a non-profit, etc. is just too overwhelming. However, I believe the solution is a viable one that will require a real grassroots effort in each community. Maybe the answer really is that “It takes a village..”. Any thoughts?

  4. Susan says:

    Everyone knows what a pressing need it is but no one’s stepping up to the plate. It seems like it’s going to require capturing the attention of organizations with power. I’d like to see Autism Speaks really press this as a major issue because they certainly have clout. Autism centers in hospitals may also be worthy of lobbying. The only thing I can think of is to identify entities that could make it happen, then flood them with emails, phone calls, and petitions.

    Susan Moffitt

  5. Chris says:

    Susan, thanks so much for your feedback! I have a “rough” business plan in mind, which would essentially target local businesses – especially women owned businesses – to become official sponsors of community specific groups. In exchange for financial support through services, etc., they would in turn receive support from us. Although not an Evangelical Christian myself, my experience has shown me that many of the local Christian college students are very accepting of our kids and families (I often use them for respite care), and I believe they would gladly volunteer their services on a semi-regular basis in exchange for community service credit for school. There are also many high school students involved in “Buddy” programs through their schools, and from what I hear from these students, there are ofter more volunteers than kids to pair them with. I am doing everything I can to “step up to the plate”. I could care less about power or recognition, I just want to make a difference. It’s time for all of us who can, to collectively use every tool available to use to implement the change. PLEASE continue brainstorming to share any thoughts, ideas, contacts, etc., so that I can continue to step forward and make my envisioned community “prototype” a reality. Thanks for listening…

  6. Tonya Frye says:

    I’m a mom to five kids, the youngest with Autism. I was desperate for respite…there was no affordable, accessible respite care program that I could trust. So we started our own and created a WORKING and AFFORDABLE model for community respite programs! :)

    We can’t wait for someone else to swoop in and do it for us…we have to be the change we NEED in this world!

  7. Susan says:

    I admire your initiative…

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  • * In 1970, Autism affected 1 out of 10,000 children
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