By Laura Shumaker
The news of the Sunnyvale mother who shot her autistic son before turning the gun on herself has shocked and saddened the autism community, but sadly, the story is similar to others in the past few years. I recently talked to Peter Finch of KGO Radio about the latest tragedy. What advice would you give to parents of young children, he asked, to manage the stress of raising a child with autism?
Here you go:
1) Build in breaks for your self. Find mentor/helper/babysitters. How? Ask your regional center about respite, find out if local colleges have programs for students who would love to spend time with your child for college credit, (I’ll have more info about this option soon), ask local high schools and colleges and churches about community service projects.
2)Connect with parents who are in the same situation. In the San Francisco Bay Area, check Parents Helping Parents, Matrix Resource Centers, orSupport for Special Needs. AUTISM SPEAKS also has a terrific resource guide to check out–state by state. Myautismteam.com is new, and also has great info.
3) Don’t be afraid to ask for professional help. It was the BEST thing I ever did.
Here is my story. I have told it before, but it is timeless. Please reach out to me if you are struggling and I will do my best to help find you resource. PLEASE forward my story to someone that you are concerned about:
I was a part time pharmaceutical rep with a one and a half year old at home the first time I got really sick, sicker than I had ever been. I remember walking up a flight of stairs carrying my detail bag full of Advil and The Today Sponge (yes, I know this dates me) and feeling so weak that I had to sit down until I felt strong enough to go down the stairs in search of a pay phone so I could call my husband.
“I think I need to go to the emergency room,” I told him. There, it was determined that I had a meningeal infection and was given IV antibiotics. Still, it took me weeks to completely recover.
“This is so strange!” I told my doctor, “I never get sick!”
I didn’t admit to him that I had been laying awake at night worrying about my first child Matthew’s development after noticing that he wasn’t meeting the milestones of other children his age.
In the years that followed there was the diagnosis of autism, two more sons and a host of stress related illness including a case of pneumonia that landed me in the hospital for two weeks.
I knew all along that I needed help, but we were spending so much on Matthew’s therapy that I couldn’t justify the cost of a therapist for myself.
“This is just the way it is,” I told myself, “Talking to someone is not going to change that. I just have to tough it out.”
So I talked to family and friends,(usually ending the conversation with ‘but I’m fine, it could be so much worse’.)
I prayed and I exercised when I wasn’t sick. I didn’t sleep.
It wasn’t until I had a public anxiety attack at California Pizza Kitchen, where our family of five was celebrating my 41st birthday that it became clear that private therapy was a necessity.(Attack documented HERE.)
If you are somewhere along this path but still have doubts about the value of private psychological help, read on to learn how my own misconceptions were debunked:
1) “This is just the way it is. Talking to someone is not going to change that. I just have to tough it out.”
Yes, this is the way it is. Research studies indicate that there something uniquely stressful about raising a child with autism.
“Sustained or chronic stress,” says Esther Sternberg, MD, “leads to elevated hormones such as cortisol, the ‘stress hormone’, and reduced serotonin and other neurotransmitters in the brain, including dopamine, which has been linked to depression.” Esther is the a leading stress researcher and the chief of neuroendocrine immunology and behavior at the National Institute of Mental Health. “When these chemical systems are working normally, they regulate biological processes like sleep, appetite, energy, and sex drive, and permit expression of normal moods and emotions.”
A good therapist can:
a) help you manage stress with common sense tools and solutions that you hadn’t thought about since you are so overwhelmed by the relentlessness of your job.
b) make you aware of resources that are available to you. Did you know, for example, that your family might qualify for free respite care? (translation-free babysitting.)
c) refer you to a psychiatrist for a medication consultation. If you are having anxiety attacks in public on a regular basis and if you are not sleeping, you may need pharmacological intervention.
2) “I can talk to my family and my friends.”
Yes, you can talk to your family and friends–and they can only do so much. They may sympathize, but you need guidance from an impartial professional.
3) “I can’t afford it.
I know. Therapists can be expensive. My doctor recommended a therapist (one that I recommend to everyone I know-she is just wonderful) that was partially covered by our medical plan. Still, it was an investment, but one that I believe kept me afloat. Check withParents Helping Parents and Matrix Resource Centers and your local Regional Center to find a therapist in your price range. You can also visit the American Psychological Association Website for information about therapists in your area.
4) “I went to one before and I hated it.”
I actually went to one who told me in the first few minutes that she was going through a horrible divorce. Another asked me to role play with an empty chair. The one I ended up with (the wonderful one) came with a strong recommendation from my doctor.If you need help finding a therapist, contact me here and I will try to help you.
5) “What about group therapy?”
Group therapy is an excellent option. Ask your child’s pediatrician for resources in your area, or see #3 above for additional resources.
“I’ve used private therapy and the support of friends and family, says Susan Woolner, autism advocate and the mother of twins on the autism spectrum. “We also have a very strong autism parent network that supports other parents at breaking point. It works well because we’ve all been there and our support is unconditional, without judgment and we’ve all been there ourselves.”