Monday, September 9, 2013

After You Have Tried Everything Else But Self Care

One by one, we learned that the unthinkable...our little ones had autism. Immediately we went into "FIGHT IT AND FIX IT" mode to try and rescue our children.  After years of continuous "Super Parenting" we were exhausted mentally, physically and emotionally.  We had lost our home, and moved to a tiny apartment in another city. Our lives were consumed with all out efforts to stop the avalanche that had left our lives, almost unrecognizable.

Before losing our home in our fight to "fix" our children's lives, my husband and I exhausted any anecdotal leads of hope for a cure we found from scouring the internet. We gave up our usual foods and routines and practiced 4 years of strict compliance with the Gluten and Casein Free Diet.  We invested countless time and resources into Secretin, Vitamin Supplements, Fish Oil, Medications for Anxiety, intensive in home therapy of Applied Behavioral Analysis/Discrete Trial, Floortime or Child lead Play Therapy, Occupational Therapy, Sensory Integration, Physical Therapy, Auditory Integration Therapy, facilitated Exercise, One on One Speech Therapy, Full Inclusion, Special Education Classes, Mainstreaming, Play-dates, home modifications for therapy equipment, specialized toys, games and swings, hammocks, trampolines, ball pits.....The list is endless. 

We were strong advocates for our children investigating and researching to utilize what experts claimed  would help them or ease the effects of autism on their lives.  At the end of that time, we were exhausted, miserable, blaming ourselves and each other, feeling guilty, depressed and like failures for not working hard enough/trying harder to have been able to cure our children.  "If we were better, smarter, richer, more dedicated parents," we told our selves, "perhaps our children would have recovered" and would now be leading more normal lives?  To find any sanity and peace in the "right now" we needed to accept that Autism was beyond our ability to "fix".

Years have gone by, our lives are still largely unrecognizable from that fantasy "we always dreamed" they would be. A fellow parent with similar life challenges, committed suicide.  In the shock and disbelief that followed, her tragic death was ultimately a wake-up call for me, "Put on your own Oxygen Mask FIRST, before you try to assist others!"  It was then my dedication to, "Self Care for Parents" was born.

A year past and then schizoaffective disorder appeared on the horizon and has since become part of my daughter's life. Thankfully, by then I already had many months of attending Al-Anon Parent Meetings for self care under my belt.  I had "practiced" self care through working some of the steps with my Sponsor.  [Sponsor is an experienced parent with a son/daughter who has/had extremely challenging behaviors, who is practicing the 12 Step Program.]  A strong support system was in place and I had "people" and they were unconditionally supportive of me.  I had been helped in applying the 12 Steps in "all areas of my life".  I had heard in the Al-Anon Meetings that "there is no situation too difficult" for the 12 Step Program to address.

I had already grabbed hold of the real hope that is available through the working of the program.  I could experience peace of mind "serenity" and even grow personally and spiritually through the vicissitudes of life, whether my children's (now teens and young adults) situation improved or not.  Once we began to apply the Principles of the 12 Step Program to our lives the quality of our lives started to improve.  We had to accept our powerlessness over "changing reality" and admit that our lives had become unmanageable.  On our own, we were powerless over autism, schizophrenia, other people's lives, behaviors, places and things.  We needed a power greater than ourselves to restore us to sanity.  With that realization, we had progressed through the First and Second Steps of the 12 Step Program of Quality of Life Recovery for Parents.

Sunday, December 9, 2012

My Life was a Nightmare

My life was a nightmare that I could not wake up from, for many years.  After discovering that three of my children, had autism, and then one also having Schizophrenia, I could not imagine every being able to smile again.  Now, after years of fighting and "not accepting" the effects of autism and mental illness on their lives,  the quality of my life is "in recovery".  Today my life has joy, gratitude and real serenity. 

Working the 12 Steps as Self Care for Parents, has given me new tools for coping with life's ongoing challenges. The 12 Step Program helps me accept what I cannot change and find peace in that.  If I continue to fight against reality, reality will win and my life will be destroyed in the process.  Then I am no use to anyone.  I have moved on from feeling like a victim, to a place of gratitude for the many blessings I can now see in my life.  

If you decide that you want to move beyond "just survival mode" and believe that there has got to be "SOMETHING MORE" to life...This Blog is for you!   Please check out all the links to more information.   If you have comments or questions, I would like to hear from you.  Send me an email.  You are not alone.  


Would This Program Be Helpful for You?


Do you worry about your son or daughter's Autism, Mental Illness, challenging behaviors or other disability?
Do you have money problems because of your son or daughter's personal, health or behavioral needs?
Do you make excuses or personal sacrifices to cover up your son/daughter's challenging behaviors?
Do you sometimes feel if your son/daughter loved you, they would stop certain behaviors to please you?
Do you seek to blame someone or something for your son/daughter's behaviors, meltdowns or difficulties at home, school, or work?
Are plans frequently changed, meals delayed, or family/personal outings cut short because of your son/daughter's behaviors?
Has your son/daughter's problems at school affected your work, mood, emotions and relationships with others?
Do you sometimes feel trapped or overwhelmed with your intensive care-giving responsibilities?
Do family members walk around “on eggshells” or sacrifice their wants/needs to try and keep your son/daughter from getting upset or having a tantrum/melt down?
Have you or others been hurt or embarrassed by your son/daughter's behavior?
Are vacations, holidays and time off, not "relaxing" or possible because of the challenging behaviors?
Have the police, social or psychiatric services been called due to behaviors or eloping?
Do you tirelessly search for new therapy, equipment, help agencies, or special medicines/treatments?
Do you go out in public and/or ride in a vehicle with your son/daughter who is often very distracting or a safety concern to you or others?
Have you refused social invitations and group events out of fear or anxiety?
Do you feel guilty, or like a failure because you are not able to control your son/daughter's  behaviors, fix their problems or make things better?
Do you think that if only your son/daughter did not have this issue, your other problems would be solved?
Do you postpone self care or that of other family members to cater to the needs of the son/daughter with Autism, Mental Illness, Behavioral Challenges?
Do you feel angry, alone in your difficulties, frustrated or depressed a lot of the time?
Do you feel that there is no one, outside your immediate family, who understands your problems?

Bottom of Form
If you have answered yes to more
than 10 Questions, 

you are an "Off Road Parent" and your
Quality of Life would benefit from Recovery.

Click on Links for More FREE Resources.