Monthly Archives: October 2013

Shades of Gray

A stranger recently sent me an e-mail expressing her irritation with what she perceives as the media’s reporting of stories pertaining to only higher functioning children [with autism].  She has a teenage son with autism, and voiced frustration with, for example, having to leave stores because of his meltdowns and the related difficulty she has in explaining the situation to people.  Judging by the tone of her email, I truly think she erroneously believes our family’s days are rather peaceful and calm, relatively speaking.  I sensed resentment in her composition.  Want to know what I told her?  I get it.  That was my heartfelt reply.  I get it.  I know what you are saying, my friend.  I understand and my heart goes out to you—not with sympathy, but with understanding.  It was important to me that this woman—a complete stranger, knew she was heard and isn’t alone.

Having a child on the spectrum can be so darn isolating, irrespective of where he or she falls on the spectrum.  Public outings can indeed be tricky.  That’s certainly the case for our family.  It’s rare that we’re able to go somewhere that our son doesn’t act out to some degree, lesser or greater; it all depends on what’s going on.  By all accounts, he is considered to be high functioning.  What does that really mean though?  Our son is bright and by all appearances, has a very large vocabulary.  At first blush, these are things that most likely allow him to be considered “higher functioning.”  As his mother and the person who spends the greatest amount of time with him, I can tell you his vocabulary isn’t organic.  Much of what munchkin says is echolalia—the automatic repetition of vocalizations made by another person.  Jackson is simply verbally regurgitating things he has heard somewhere (usually Thomas & Friends or Curious George).  Oftentimes these things come out at very inappropriate times.  He has no governor on what he says or when/how often he says/repeats things.  His speech is rapid fire.

Admittedly, we don’t have a lot of public meltdowns.  But believe me when I tell you, Jackson exhibits his share of behaviors that constantly illicit stares, reactions and comments—none of which are favorable or desired.  Jackson often has difficulty modulating his behavior in public/crowded spaces and therefore, displays various self-stimulatory behaviors such as spinning, loudly vocalizing sounds and humming, and putting his mouth on things (i.e. shopping carts, windows, display cases and floors).   He frequently lies on the floor and spends an inordinate amount of time standing with his index fingers pressed firmly behind his earlobes because he is on sensory overload.  He also has auditory and visual processing disorders.   It’s extremely difficult for Jackson to remain focused for more than a few seconds (unless watching a favorite video), and equally difficult to grasp what he’s being told to do or not do.  We’ve been kicked out of and turned down by numerous preschool programs.  We’ve been escorted from stores and literally booted out of recreational playgroups and classes.  The comments are utterly ridiculous.  And in complete transparency, someone made a very false report to Florida’s Department of Children and Families (“DCF”) after seeing Jackson and me leaving story time at our local public library.  (Which we were forced to leave because of Jackson’s (above-mentioned) behavior(s).)  I still don’t understand that one…

All this to say, we—you and I, your family and mine, your son or daughter, and our Jackson—are walking the same walk.  In my humble opinion, autism is not black or white, only various shades of gray.  And appearances are always deceiving.  I have no answers, but humbly ask if we can support each other along the way.  I may not know you personally, but if you’re like me, you need all the love and support you can get.  I’m lifting you and your family up in prayer.  I’ve no answers.  I’ve no solutions. I’ve no excuses.  I simply want you to know I’m on your side—and I hope you’re on mine.  Lord knows, I need all the support I can get.

Blessings and peace to you.

Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart. ~ Marcus Aelius Aurelius

Who Rescues Who?

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“Dogs are not our whole life, but they make our life whole.” ~ Roger Caras

This photo is an accurate portrayal of the love our son has for our dog, Geoffrey—a rescue from Ruff World Animal Adoptions in Central Florida.  He is the fourth canine family member (and third rescue) we’ve been blessed to share life with in the past twelve years.

Our dogs—the last two (Felix and now Geoffrey) in particular—have been vital to our family. They have proven to be effective touchstones for our son—having a somewhat grounding influence on him.  For me they have proven to be great stress reducers.  My favorite part of the day is lying in bed at night waiting for munchkin to fall asleep.  Geoffrey snoozes with his front and back legs draped over me while his head rests in my lap.  The room is dark except for the soft glow of a nightlight.  As I stroke the side of his face and run his velvety ear repeatedly through my fingers I can literally feel the stress of the day wash away.  (Studies have shown that petting a dog can lower your heart rate.)  Truth be told, if it weren’t for my husband waiting for me to spend some time with him, I could conceivably stay there all night for the inner peace I’m afforded in that sacred space.

If you are contemplating bringing a canine family member into your home I urge you to please consider adopting from a rescue or shelter.  There are so many wonderful, loving dogs in desperate need of a loving forever home.

An estimated 2.7 million healthy shelter pets are not adopted each year, and only about 30 percent of pets in homes come from shelters and rescues.

U.S. shelter and adoption estimates

  • 83.3 million—Number of owned dogs
  • 20 percent—Percentage of owned dogs who were adopted from animal shelters
  • 3,500—Number of animal shelters
  • 6 to 8 million—Number of cats and dogs entering shelters each year
  • 25 percent—Percentage of purebred dogs in shelters
  • 3 to 4 million—Number cats and dogs adopted from shelters each year
  • 2.7 million—Number of adoptable cats and dogs euthanized in shelters each year

                                                                                     ~ 2013-2014 statistics according to the Humane Society of the US 

Shine Your Light

I have a confession to make.  I’m insecure.  I have been my entire life. To compensate for my lack of self-confidence I’ve historically been a rather gregarious gal.  Hiding behind this public persona, however, is a person deathly afraid of rejection.  I talk a good game, but truth be told I hide my life and my “light” from the world.

In previous posts, I’ve shared links to both a recent local television news segment [http://bit.ly/15QPPR2] and half hour news show [http://bit.ly/153Jhiu] I participated in, both of which speak on the subject of autism (early diagnosis and education, respectively).  Terrified of public speaking, I told myself that it would be completely worth it if our family’s story helped one person.  Let me tell you—I was elated to receive an e-mail from a woman who saw the news show on autism and education and was looking for information.  The discomfort I experienced by appearing on that show was well worth it based on this single e-mail from the grandmother of a young boy with autism.  She was seeking information on schools, programs and medical providers.  I was beyond thrilled to share information I’ve gleaned and compiled over the past two years.  Additionally, another woman contacted me via a mutual friend of ours.  She has a daughter with autism and is relocating to Palm Beach County.  She too was seeking information on education and healthcare/therapy providers.

Had I not stepped out of my comfort zone I wouldn’t have been able to help these women. The bottom line is this:  Folks took notice.  Awareness was raised.  People—just like me—are looking for help and searching for answers. Don’t isolate yourself.  People aren’t out to judge you. (Well, at least not the majority of them.)  Parents are simply looking for help.  They’re looking for a connection.  They’re looking for acceptance.  Their eyes are upon you and me. Illuminate your journey and you’ll light their path.  That’s part and parcel of our experience.

 “You are the light of the world. A city set on a hill cannot be hidden. Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all in the house. In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven.” ~Matthew 5:14-16