Neverland Without a GPS

I just read an article on www.myfoxhouston.com which cited a study from the University of Wisconsin-Madison which stated that moms of kids with autism suffer from PTSD.  My friends and I have talked for years about the cumulative effects of caring for a severely affected child, and we all know how this level of caregiver stress can be absolutely debilitating.  I read another study years ago which documented that the telomeres (the tips of our chromosomes) are shortened when we care for a very sick child.  There aren’t a lot of places for us caregivers to go, but I hope this page can become one of them.

I asked my therapist about Post Traumatic Stress Disorder a few months ago and she told me that trauma has a very wide definition.  As a society we mostly link this disorder to soldiers returning from battle.  I’ve read of the difficult transition they must make from military to civilian life and I wonder what many of them would think of caregivers being lumped into the same category.  Michele Guppy, the subject of the Fox Houston article, stated: “We don’t leave our battlefield.”  And there’s the rub.

I showed this blog to my dad and he gave me a very interesting perspective: our stress is not necessarily post traumatic.  I am not a psychologist, psychiatrist, or social worker and I am simply offering my opinion here, not intending to diagnose, treat or otherwise provide any aid to anyone.  But my dad’s words made me look a little further.  Because we “can’t leave our battlefield,” perhaps a better term for this kind of stress is this (which I lifted word for word from Wikipedia.com:

Chronic stress is the response to emotional pressure suffered for a prolonged period over which an individual perceives he or she has no control. It involves an endocrine system response in which occurs a release of corticosteroids. While the immediate effects of stress hormones are beneficial in a particular situation, long-term exposure to stress creates a high level of these hormones that remains constant. This may lead to high blood pressure (and subsequently heart disease), damage to muscle tissue, inhibition of growth, suppression of the immune system,^[1] and damage to mental health.

The response to emotional pressure suffered for a prolonged period seems to fit with most of my friends and me.  Within that, there are traumas, such as surgeries, injuries or new and baffling patterns of behavior.  The common denominator in all of this is that we feel we have no control over the situation.

From the time Caleb arrives home from school until he goes to bed, I am on a constant state of alert.  A few weeks ago I was in the back of the house when he decided he needed to check on a workman’s car that was parked on the street (this creates unbearable stress for him and he needs to check constantly until they leave).  I have an alarm on every door and window so I was notified the minute he opened the door.  The sound terrified him and kept him from going outside, so the alarm more than served its purpose.  But both Caleb and I were shaken for about an hour after the sirens ended.

One of Caleb’s favorite forms of entertainment is his iPad.  It’s loaded with educational software and games and the YouTube app.  Mostly, Caleb loves to watch all the rides at every Disney park, which people have recorded and posted.  Sometimes he will hear a song he likes and ask me to find the video—I watch it first then decide if he can see that version, or, in the instance of one FloRida song, the Teletubbies version.  We mostly have success finding a clean video, but there are some songs that he just can’t watch.

Yesterday afternoon, Caleb came to me asking me to find a song that had the word “you” in it.  He had heard it earlier in the day on a field trip.  Caleb’s speech is extremely delayed and disordered and I am usually the only one who understands him at all.  I couldn’t understand anything of what he was asking me except for “you.”  He tried singing it to me and I could not place the song at all.  I went on the iTunes top 100 song chart list and tried a few songs, but I never found the one he was looking for.  He grew increasingly frustrated and angry, and I don’t blame him one bit.  How awful must it be to know what you want, to hear it in your head, and not be able to either search for it yourself or give enough information for someone else to find it?  Caleb eventually grabbed the iPad and stomped away.  Deflated and nauseous, my day never got back on track either.  I had a few nightmares last night and even writing this is causing my heart to race.

All parents suffer stress.  We know this.  I don’t know the answer to the problem of the upper echelon of stress that parents of kids with special needs.  I have been on several antidepressants.  In my case, they didn’t help, I believe because this is a life situation, not a chemical imbalance, but I do know some people whom they have helped.  I have been in therapy off and on throughout Caleb’s life.  It does help on a cognitive level but I have yet to master my response to stress.  I have been blinded for 90 minutes three times by ophthalmic migraines.  I have had panic and anxiety attacks, one of which sent me to the hospital overnight.  I constantly struggle with sleep and when I do sleep, I often have nightmares.  My muscles are a mess and I am in physical therapy to make them functional again.  Clearly, I am not the person to ask for ideas on how to deal effectively with this stress, but I would love to hear what others do to combat this life-strangling stress.

I think the worst part of special needs parenting stress is we never know what might pop up or when.  Like the other day, I can be having a perfectly happy day until Caleb needs a song on his iPad and I can’t find it for him.  Within seconds, I am a puddled mess of emotions and fear that I am not doing my best for him. Recovery takes longer the older he grows.

The University of Wisconsin-Madison study is an excellent step in the right direction of finding help for those of us who are suffering, mostly in silence.  I pray that the study doesn’t end here.  I pray they reach out to parents and see what kind of help is needed.  Respite services, extra support in the home, or even just getting the word out that we need more compassion are a good start.  Day programs for young adults who age out of the school system would be an enormous help.  But even I don’t have all the answers, and I’ve been on this road a very long time.

What do you think would help this community?