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Autism Parenting: Master of Disaster

Fire alarmBy Cathy Jameson

I recently talked to my typical kids about a house emergency plan.  We hadn’t had a review of that topic in a few months.  I wanted the kids to remember how to safely leave the house should we ever have a fire, earthquake or other event where we’d have to evacuate quickly.  We talked about how to call the police and which neighbor could help us if we had a middle-of-the-night scare.  My oldest daughter and my typical son understood the review well.  Ronan’s next younger sister had many questions and of course many concerns.  I answered honestly while also hoping to not instill fear as I spoke. 

I explained that these types of events are called “What if…” moments.  No one ever wants to go through them, but we should all be prepared for them just in case.  We covered what constituted an emergency, who was going to grab whom on the way out of the house, where our meeting place was and how we’d stay safe once help was on the way.  My five-year old sat quietly listening and then asked, “What about my stuff like my Bekah Bear and Flower Pillow?”  I reminded her that we would be sad if we couldn’t see her things again, but we can always get new ones later. “There’s only one of you, and I can’t go buy a new you.  So, get out of the house as quickly as you can.  Don’t go back in.  Please, don’t go back.” 

Two days after we had re-established our family emergency plan I had to make a 9-1-1 call.  Fortunately my older children were at school, so only my youngest and I were home at the time.  I had less people to get outside quickly.  The emergency was averted and then resolved with the assistance of our local rescue crew.  In just a few minutes an entire scenario of “What Ifs” flooded my thoughts.  I shudder at the thought of “What if….what if the house went up in flames?  What if I couldn’t get out of there fast enough?  What if I couldn’t save my own child?”  I am thankful for fast thinking on my part and a blessing that saved us from potential disaster. 

With only a precious few minutes to act, I had to call the fire department, run upstairs, wake up my sleeping child, run back downstairs, get outside and scamper up my driveway away from the house.  All the while I was checking off items on my mental “What to do in an emergency” list.  Think. Think. Think! Slowing down was not an option, but I had to slow my thoughts to know exactly what to do:  make the call, get me and the kid, run like heck, don’t go back.  It was tempting at the very last second to go back and grab my purse.  That split second tempted me to go 5 feet further into the house to grab our file of important papers that would be difficult and time consuming to replace.  But, I remembered the plan.  Stick to the plan.  Things can be replaced.  Life cannot.  Run.  Find the meeting place.  Wait for help.   Don’t go back.

Don’t go back.  Don’t. Go. Back.  I do that though when I go back in time with other thoughts.  It’s not the “What If” thoughts so much as the “What Could Have Been” thoughts about Ronan.  I think about the years of early parenting and being a very young mother.  I was so young.  I was still so new at it.  I was so trusting (a.k.a., stupid).  Really.  I took a great deal of the baby information my friends with older children shared as gospel truth.  They bought the more expensive Gerber baby food. I bought Gerber baby food.  They used the Baby Bjorn front baby carrier.  I used a Baby Bjorn.  They took their kids to well-baby visits.  I took my kids to well-baby visits.  They got their children their vaccines.  I got my children their vaccines.  How did I let certain things happen?  And, why didn’t I know about the flip side?  Surely other brands of baby food would suffice.  Didn’t I know that back baby carrier were better and more comfortable?  And, aren’t inflated vaccine schedules that aren’t mandatory too much too soon?  I was going through normal chain of events normal parents did because at the time, what I thought I was experiencing as a parent was normal.   

Normal.  Life for us now is “normal.”  It’s normal for me as I’ve adapted from the What Ifs when they turned into What Could Have Been and morphed into What Is Now.  I try not to go back too often to those thoughts, but they creep in over time.  It’s hard to realize that then, when I believed what Ronan was doing was normal, was something else.  Learning how to adjust and overcome those things Ronan had continues to help me face much of what is part of everyday now.  It’s what I know.  It’s what I try to understand and accept.  It’s our normal.

I will say that going back in time has served a purpose:  I learned a great amount of information from Ronan’s past to help me plan his present.  I sometimes have to gently remind myself that if I hadn’t discovered how to look for his delays he might be even farther behind today.  If I didn’t run into the people who guided me when I did who knows what path Ronan and I would be walking.  I can’t fully look away from what happened to Ronan because that will always be part of life.  How I handle that past will forever affect the future for my son and for our family. 

I have a feeling I’ll always look over my shoulder.  I’ll always wonder.  I’ll always hope that one day I can forget about how life changed forever.  I can’t go back and retrieve everything that happened, but I will use the past as a stepping stone to something new and something hopefully better.  Ronan shows me hopefully better every few weeks.  He can read.  He staring to write.  He’s learning how to type. 

Not too long ago Ronan started something new when I dropped him off at school.  I bring Ronan to the curb to his teacher (who then walks with him into school).  A few days a week Ronan looks back at me before I drive away.  He’s never done that before.  Usually he’d slowly head toward the front door of the school.  Lately, Ronan gets out of the car, takes a few steps and glances over his shoulder.  He looks at me and waits.  I look right back at him.  He stares at me with those big, brown inquisitive eyes.  I blow Ronan a kiss or sign “I love you.”  He lingers another second or two until I wave goodbye.  Turning his head toward school Ronan then continues walk into school.  He’s ready for his day. 

I sit in the car and smile thinking, “Wow, he looked back.”  Ronan looked me in the eye.  He waited for me.  He wanted one more kiss, one more piece of assurance from me.  He got what he needed.  He moved forward, and he started his day.  Go, my beautiful child.  Keep moving.  Teach me always how to go forward. I’m right behind you. 

Cathy Jameson is a Contributing Editor for Age of Autism.


Marie-Anne Denayer

To Jillba,
Well, I did lose my job and I am now forced to file for bankruptcy. After completing 2 residencies of 3 years each after 7 years of medical school, I chose to follow the path of academic neurology. Stephanie, the 2nd of 3 kids, was born in May 1987 as I at last started working in my chosen field. All was well until the summer of 88 when my 3rd child was born, but my life was soon to irremediably change. Stephanie received the 15 mos MMR that summer. The night of the shot she had an extremely high fever that when on for 3 days. By Christmas, she had lost all of her bilingual vocabulary, no longer interacted and regressed to crawling..We had entered the world of autism.
I started missing a lot of work to take her to specialists and to physical/occupational and speech therapy. She began having episodic high fevers and was eventually found to have Lyme disease. As she ended requiring 3 months of IV antibiotics, I cut my work schedule down to 1 day a week.
Fevers, lab-work improved but autism persisted.
I let myself be convinced to start a solo private practice. It gave me the flexibility of altering my schedule whenever necessary to attend to Stephanie's needs. Unfortunately, as not a week would go by without one Stephanie crisis or another, revenues started dwindling to the point where I was struggling to just stay afloat, this in spite of being an "expert" in my field. In December 0f 2009, after 25 years of juggling work, home, autism and 2 other kids, my immune system crashed and I was hospitalized for 7 weeks due to an overwhelming infection. Needless to say, my practice did not survive, and here I am, 2 years later, with still no more than 5 hours of service a day in a community setting for my daughter. I remain unemployed while my husband works, as private practice is totally unrealistic in my situation. Until I can secure more than 5 hours of service a day for my Stephanie, the practice of medicine will remain a thing of the past for me.



How did you manage to keep your job? I always worry about my son getting his services cut. I would lose my job immediately because they do not accept people being absent of gone for long periods of time. I am happy to hear that you did find a program that offers 1:1 services but 5 hours does not seem very much. Do you get any other support at home?


Thanking God for your safety this week! You too are irreplaceable.

Marie-Anne Denayer

As autistic as she remains, my daughter has always been extremely, if not excessively attached to me. The rare times I could go out without children, I would have to sneak out, otherwise she would hold on to me and carry on, wanting to accompany me.
She took the bus to and from school during the 18 years she attended our town's special Ed programs. For one year after graduating from the school system , my daughter attended a day-program, transportation no longer provided.
Every morning I would drive her to her program, then proceed to get myself to work. After a successful first drop-off, my daughter started refusing to enter the building, unless I accompanied her and eventually, most days would refuse to get out of my car. It became apparent that she did not like being there, nor did the program appreciated having her..."she was too difficult" and "required too much supervision". Thankfully, we were able to transfer her to a new program, but no services were provided for 3 months as the state had decided that she no longer needed "1-on-1" supervision. Since no program would accept her without a "1-on-1", we had to fight and appeal the decision. My daughter is now in a new 5 hrs/day program, transportation provided.
She otherwise rarely allows me out of her sight.


What a great ending to your story, Cat! He has made such strides this past year. We're so proud of him. Still wondering about your emergency though - we'll have to hear about that later.

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