Friday, December 27, 2013

Autism: A Christmas Kick In The Head


Don't get me wrong I HATE AUTISM. I loathe it.  I would give it away, throw it out for the trash, put it in the blender, burn in on the barbeque, well, you get my drift.  I hate it for the moments, the experiences, the joy, it has stolen from my child.  I hate it for the pain, the anguish, the confusion, the tears it has caused my child.  For those who feel otherwise, that is fine.  For those who view it as a blessing, a difference, I applaud you and support you 100%.  I have not reached this level of thinking yet. 

The past two years of our lives, my son's and mine, have been hell.  He has lost his eyesight and his father. (No, his Dad did not die). I cannot explain either to him in terms that he is able to understand yet.  He is so much stronger than I in that he takes on each day without the knowledge that I have, trusting, I suppose, in me.  Through this 2 years I have been drop kicked by every emotion imaginable.  Fear, anger, hatred, betrayal, doubt, mistrust, envy.  I've been on the amusement park log flume ride of emotion and the boat never seems to pull into the starting area.  It just keeps looping and looping around and trust me, I wanna get off. It's the joke about "show me a Mom who has never thought of taking the car keys, driving off and never coming back, and I'll show you a mom who can't drive.  

But I can't drive off.  He needs me.  He needs me now more than ever.  

But this Christmas in an unexpected moment I received a rather strong KICK IN THE HEAD.  I began following a story on Facebook about a little girl in our state, 7 years old, whose days on earth were numbered due to a very rare form of leukemia.  I read how the folks in her town rallied in numbers exceeding 8,000 people, to fulfill one of her last hear Christmas carols being sung outside her home.  I jumped on the prayer chain on Facebook for this child.  Her family clung to the slightest hope for a miracle for her to pull through.  She had been through so much in a short period of time, 7 months since her diagnosis.  Christmas Eve, my son with autism and I retired for the night thinking of the gifts he would receive the next morning when Santa visited our house.  

Her parents however spent the night in vigil over their precious child whose life hung in the balance. 

I awoke Christmas Day and checked their Facebook page to find the worst.  Their daughter had passed from this earth at 3:10 am.  My heart sank.  How will this family every have another enjoyable Christmas remembering this as the day they lost their child?  

Like a kick in the head from a size 13 Army boot I realized.  Yes, my child has autism, but I have him.  I have him here on earth.  I'm sure her parents would tolerate any form of loudness, hyperactivity, any meltdown, any repetitive behavior, any negative, annoying, tiring situation for the opportunity to spend time with their child, who is gone. 

I vowed any moment in 2014 when I am feeling sorry for myself, when I'm exhausted from autism, when I'm saying "why my child" I will think of this family and this child.  I'm realizing that sometimes miracles don't always immediately present themselves as such.  You just need a kick in the head. 

Tuesday, December 3, 2013

Autism: No Leftovers Please


With Thanksgiving being just slightly behind us I feel compelled to write this blog.  I've avoided it for a long time.  Reason?  Somewhat to be private about what's going on in my and my son's life, somewhat on legal advice, so I will keep it clean. 

This Thanksgiving was a tad different than the last.  This year my son's health is somewhat better than last year and he was actually able to get out of bed and listen to (not watch) the Macy's Thanksgiving Parade.  This is a tradition in our house and for his sake, even though he has lost his eyesight, I continue it.  We wait for our favorite character balloons to come down the street.  I describe them as they appear so he knows what's going on.  I admit I embellish the line up with those characters he wants to be in the parade that are not.  I suppose it gives credit to my creativity to come up with descriptions of "Little Bill", "Charlie Brown" "Barney" and other characters that are not really in the parade.  I'm sure there are some that would disagree with me on this but it's my choice. 

After the parade I start to work on the turkey and the other food items that only I will eat.  My son has the typical self restricted autism diet.  By the end of the day I am exhausted and wonder why I go to all this trouble for only one person to eat.  Why only one person?  Reason being my husband of 26 years left our household two years ago.  My son, autistic and newly blind and myself are the leftovers. 

Let's check the Wikipedia definition of leftovers:

Leftovers are the uneaten edible remains of a meal after the meal is over, and everyone has finished eating. Food scraps that are not considered edible (such as bones or the skins of some vegetables and fruits) are not regarded as leftovers, but rather as waste material; any remaining edible portions constitute the leftovers.
The ultimate fate of leftovers depends on where the meal was eaten, the preferences of the diner, and the prevailing social culture. Home cooking leftovers are often saved to be eaten later. This is facilitated by being in a private environment, with food preserving facilities such as airtight containers and refrigeration close at hand. Some leftover food can be eaten cold from the refrigerator, while others may be reheated in a microwave or a conventional oven, or mixed with additional ingredients and recooked to make a new dish such as bubble and squeak.

So allow me to compare the definition of "leftovers" with regard to food and that of "leftovers" with regard to a family. 

The "uneaten edible remains after everyone has finished".  The people you promised to love honor and cherish and rear, as in brining up a chid, that you leave remaining after you are "finished" with them. 

The "ultimate fate of the leftovers depends on where the meal was eaten (this might mean if you are surrounded by  extended family to help and support you or if you are left on your own).  "The preferences of the diner" could this refer to how much of a darn the departing party gives to those left behind?  "And the prevailing social culture") to me this means how society views what you have done to your family members and how well you will be accepted in society for having done so.  From our perspective I would say that our society has lost all its morals and holds nothing sacred or honest anymore.  The "it is what it is" motto prevails.  

I spoke with another autism mom prior to Halloween this year.  "You know" she said, " the divorce rate for autism families is 50%".  So of course, I looked it up. Based on a study done by the Kennedy-Krieger Institute of Baltimore, MD, a premier facility serving autism families, the divorce rate for autism families is no higher than that of regular families. 

So, do you blame it on the autism?  Or something else?  I do not know.  I do know however that at the "new location"  there are no meltdowns, no tantrums, no stacks of video tapes, no scripting, no ritualistic behaviors.  There are no barriers to living.  If one wants to jump in to car and take the kids to the movies, go for it.  If one wants to have guests over for a dinner party, go for it.  Wanna plan a long distance vacation, go for it.  Want to have everything neat and tidy, of course we can.  Want everyone to have their best, prettiest, glamorous, fashion conscious appearance.  Yes we can do that, because, remember "people judge you by your appearance".  God help us. 

However, you forgot one thing.  Back at home plate, (yes, pun totally intended)  you left the stove on while you were out (from Lilo and Stitch).  One of the leftovers is not doing well.  Well really both of them are not doing well.  The elder one who supported you until you became successful and self absorbed is alone and tired and stressed and yes, IT SHOWS.  She, or maybe he ( could be both scenarios) is struggling as you cannot imagine to support a child that has his own struggles internally.  A child that does not understand the change; how can he when the "elder" doesn't either? You have left her to explain the unexplainable.  To deal with a broken heart and a child with a broken heart.  You have left her to hear "you have to call Daddy" in the midst of a major meltdown.  She cannot explain the reality of this situation to a child that does not understand anything other than "you are supposed to be there", a child who quotes the Tigger Movie "Why can't we go back and be a family again?".  He speaks in scripts but speaks his heart as best he can.  The pain in him is hard to watch.  The leftovers are trying hard not to spoil. 

Therefore with this Thanksgiving passed until next year, I beseech anyone having problems in their family and marriage living with autism.  Do anything, do everything, try it all to salvage what was once the dream.  Forget you ego and go to counseling, get a second outside opinion and guidance.  And STOP THINKING ABOUT YOURSELF SOLELY.  YOU HAVE LIVES IN YOUR HANDS.  People are not disposable like a turkey leg.  You cannot simply scrape them off your plate.  They did not ask to be brought into this world, they are of your making and they deserve so much better.  NO LEFTOVERS PLEASE.