Autism: "Doobee Or Not Doobee?" - And Never The Twain Shall Meet

Autism:  "Doobee Or Not Doobee?" - And Never The Twain Shall Meet

My sister in law called me the other day with a question.  As the mom of two neurotypical teenage boys, she faces her own unique set of challenges, totally dissimilar to mine, as I am an autism mom.

The situation was a friend of her eldest son had advertised himself as "smoking pot".  Whether or not this was actually true remains to be proved, however she was perplexed as to what to instruct her son to do regarding continuing to "hang out" with this other teenager.

She posed the question to me asking what would I do if I found that one of my son's friends was using drugs.  Now, remember my son is 16 also but has autism.

So, I admit when she first posed the question my mouth was open but nothing came out.  I didn't have an answer for her.  I knew she wasn't dwelling on the fact that Joey has autism and the likelihood of one of his friends smoking pot, though not  impossible, is highly unlikely.  

While this is not necessarily a situation in a young life worth celebrating, I was left with that tugging feeling, knowing that this is just one more problem that I as an autism mom, will probably NOT encounter.  

We ended the text conversation and I was left staring at the mental image of that list that  some autism moms know all too well.  The "things my kid will probably never do" list. 

Things like:

Worrying about getting driver's license

Not having enough money to buy his own car

Being upset about finding a date for the prom

Not making the track, football or basketball team 

Deciding what college to apply to 

Having a girlfriend and getting dumped by that girlfriend

I thought of the two young men, my son and my nephew.  I thought of the dichotomy between a neurotypical teenager and one with autism.  Both approximately the same age but living in two different worlds.  

Is my son,  in a way, better off that he will not have to deal  with some of these normal passages into adulthood?  Is his innocence to his betterment?  Is worrying about missing a "Finding Nemo " VHS tape less stressful than worrying about "finding a job"?

Or is it me?  My Mom used to say " you can't miss what you never had".  Perhaps my son will not feel the loss of some of these average teenage experiences.   But I will feel the loss.  I must stop imposing my perception of what his life should be compared to other teens.   I must let him live his own life on his own terms.   The two young adults are not the same and never will be...and never the twain shall meet.

Oh, East is 
East, and West is West, and never the twain shall meet,
Till Earth and Sky stand presently at God's great Judgment Seat;
But there is neither East nor West, Border, nor Breed, nor Birth,
When two strong men stand face to face,
tho' they come from the ends of the earth!
by: Rudyard Kipling

Autism: Play Nice

Autism:  Play Nice!

When teaching our children, neuro typical or children with autism, what are the things we stress when it comes to dealing with others?

PLAY NICE!

SHARE!

DONT SAY MEAN THINGS TO OTHERS!

IT'S NOT ABOUT WINNING!

NO NAME CALLING!

NO BULLYING!

EVERYONE HAS THEIR OWN WAY OF DOING THINGS!

Simple everyday rules and guidelines such as these are the mindset we try to impart to our children.  Children on the autism spectrum struggle with these concepts more than other children. The interpretation of these words may be obvious to us but not as easy to decipher if you are a child on the spectrum. We as adults are charged with explaining the meaning of these phrases to them and  giving examples of how to implement them in their daily lives. 

I believe it's called: SOCIAL SKILLS.

So why then why do I see grown adults, most of them not on the spectrum totally ignoring these rules?  And to make it worse, these are folks in the autism community.  Lately I've seen family members of persons on the spectrum, reduced to tears over the rude, hurtful, bullying comments made by others.  

We are all on the same team so where is the concept of "play fair" amongst us?  

As we all communicate in the hopes of providing each other knowledge and support, can we not remember that "we all have our own way of doing things?"  If you do not agree with a parent with regard to a treatment, medicine or behavioral approach, by all means say so, but be constructive, not destructive. 

Every parent has their own vision for their child.  You do not live in their house, you do not know their child as they do. Of course I've seen parents talk about treatments or procedures that they use in the hopes of helping their child that I, myself, would never dream of trying.  But that's "MY" opinion.  And you know what they say about "opinions".  

So as you hit the "playground" of life tomorrow be kind to your friends.  It's about "winning" for each family member not "winning" the argument.  It's about giving the "high five", not pointing the finger.  It's not "popular" vs. "unpopular" team and it's certainly not

DODGEBALL!                                                                            

Autism: My Pom-Poms Are Flat

Autism:  My Pom-Poms Are Flat

by Pamela Mari 

"We are autie mommies"

"Mighty, mighty mommies"

"Everywhere we go 

people wanna know"

"Who we are?"

"So we tell them" Hooray!

I was not a cheerleader in high school.  I was in drama, theatre and served on the newspaper staff.  I vaguely remember trying out for cheerleading.  I think one of the tests was to run up and down the bleachers without breaking your neck.  After which, I departed the gym, knowing this group was not for me.  

In a conversation with another autism mom earlier this month we discussed the ongoing "cheerleading" we do for our kids. "Yeah, great job". "You can do it".  " Don't give up, we will get there" "One more try honey".  "Don't let the angry feelings get you."  "I am so proud of you."  "I will never give up on you."  

The list of encouragements is endless. 

It must have been a relatively bad day with autism at our house.  I felt as if I had climbed to the top of the "cheerleaders" pyramid, done the flip and landed flat on my butt.  Where was that person that was supposed to catch ME?  I remember saying to my friend "that's it...my pom poms are flat".  There's no playbook, no coach, and no spare players on the bench.  At our house it's a one man team, and a one man cheering section.  There's no time outs, we are always in overtime.  I am the quarterback, the defense and the offense.  I'm ready to throw in the proverbial "terrible towel".  I have met the enemy and it has won. 

My friend in her wisdom let me rant. "I've tried and I've tried", I told her, I've repeated this a million times and he still doesn't get it!  

A seasoned veteran of the game she simply replied "Yes, but the million and tenth time, he will!

So here I go, with the Hail Mary pass into the fray chanting: 

"We are autie mommies, mighty mighty mommies!

Autism: The Mother of Invention

Autism:  The Mother of Invention 

by Pamela Mari

I guess I shouldn't complain.  My son with autism doesn't ask for $200 sneakers.  He doesn't ask for $500 gaming systems.  I don't have to listen to him lamenting about the fact that he doesn't have the latest cell phone or computer game.  His requests are relatively simple with one exception.  He usually asks for things that "don't exist".  

By this I mean he asks for things that he sees in videos.  He obsesses about creations that no toy maker in the world gives a darn about and certainly isn't going to put into production.  

In so wanting to give him what he desires I have become a creator of the un-purchasable.  My Mom used to tell me 

"necessity is the mother of invention".  

NECESSITY IS THE MOTHER OF INVENTION:

proverb has been defined as– when the need for something becomes imperative, you are forced to find ways of getting or achieving it.[3

Very true at our house.  

One example. Joey likes to watch Winnie The Pooh.  There is an episode in which Tigger pretends to be "The Masked   Defender" (or Offender, as I think Joey sometimes calls him).  Tigger takes on the persona of Zorro and does battle with a runaway bale of hay sporting all types of junk that it acquires as it runs through the Hundred Acre Wood. 

The intro to the cartoon mentions Piglet's new "stinky sidekick", which of course is the yucky bale of hay monster.  Joey hears this as "stinky inside kick".  So for years now he's been bugging me to build a "stinky inside kick".  I've been putting him off for years.  But this year I felt he'd waited long enough.  I promised him we would make it at Halloween.  We went to the local pumpkin and flower mart and bought a small bale of hay.  But shortly thereafter he developed a case of conjunctivitis, which in our house are deadly words so I thought perhaps it better to not use an allergy laden mess of hay.  I chose a cardboard box.  This stinky inside kick had arms,  supposed to be a garden tool and a plunger.  I used a potatoe masher and a turkey baster.  It needed a belt and sneakers.  Belt made out of yarn and sneakers fashioned out of cardboard.  But the real catch was it was supposed to drive wildly on a wagon.  We have no wagon.  So we used an office chair on wheels.   The googly 3-D eyes were made of the bottoms of take out soda cups.  Joey dressed himself as "The Masked Offender" by using a bathrobe, a belt, an old cowboy hat and winter gloves.  He was ready to defeat the "stinky inside kick".  

A more recent "invention" challenge was presented to me this week.  In the movie "Lilo and Stitch: The Movie", Lilo and Stitch the alien, reanimate evil experiments like himself, by using a machine that utters:  "Container ready", "Experiment 625 activated".  The machine dispenses a small ball which they then drop in the bathtub and an evil experiment creature is created. I knew my son would not settle for my voice saying the computerized sounding voice, so I took my Iphone and recorded the segments from the movie.  Now, to create a machine.  Humm, I went to Radio Shack and got a small bluetooth speaker shaped like a can.  I could then transmit the recorded lines to the speaker.  But now, what to use for the experiment "pods".  I got sour balls, the round candies, in the loose candy aisle at the supermarket.  I only grabbed a handful because I don't particularly like "sour balls" and didn't want to be stuck with a lot of them after the activity.  WRONG!!!  Half way through the acting out of this scene I ran out of sour balls, I had to dig them out of the water and try to salvage them to be re-inserted in the water bath.  Note to self:  Next time buy enough "experiment pods".  Nonetheless, he was pleased to hear the sound coming out of the speaker and it was successful. 

And last but not least how could we forget the day Spongebob, Mr. Krabs, Squidward and Patrick venture onto  "dry land" in a challenge issued by their friend "Sandy Cheeks" the Squirrel.  This video scene shows the aforementioned characters taking on the form of puppets, on sticks as they blast out of the sea and onto dry land.  This meant I had to create a Spongebob, Patrick Starfish, Squidward, Mr. Krabs and Sandy all in "puppet on a stick" format.  Spongebob, Patrick and Squidward were all carved out of household cleaning sponges.  Mr. Krabs was purchased in the seafood aisle of the supermarket, a real steamed crab.  And dear Sandy Cheeks was last.  She was shown as a real "hand puppet" in the video.  I called the toy store in our town known for horribly expensive but rare and unusual toys.  "Do you have a squirrel hand puppet?"  "Ok, I'll be right over".  After scoring Sandy at the toy store I brought her home to try to construct a "diving helmet" which she wears in Spongebob because she obviously is not a water creature, so she needs air.  I cut the bottom off a spring water bottle and it fit her head just right.  So now my son was able to play out all the characters just as they are shown in the video.  

I'm so happy he's not into Spiderman!

Autism: Breaking the Sound Barrier

Autism:  Breaking the Sound Barrier

I don't know why I always think I am the only one experiencing a certain behavior in my life with my son with autism.  Before he was diagnosed, I thought it so peculiar and unique that he liked to rewind video tapes.  I wondered why he did it until I stumbled upon a list of 

"stereotypical" behaviors for autistic children, rewinding video tapes being one of them.  

Last week on Facebook I read of how many other children will have multiple media sources, the TV, the DVD, the CD player, the computer, all running at the same time, which my son does also.  Ok, guess I'm not alone in that one either. 

But today I touch on the subject of "noise". Again, I cannot be alone in this situation with regard to autism and our kids.  I think about the TV commercial where the homemaker answers the door to find a service man outside.  In the background you see two children jumping on the couch, beating each other with "pool noodles" making a good deal of noise.  We can assume this commercial portrays "regular" kids so sometimes I wonder 

"am I just too old for this?"  " do kids actually make this much noise?", "what about a family where they have numerous children of varying ages?" does it get this noisy at their homes?  

At our house we have "good" noise and "bad" noise.  "Good" noise is the type I am experiencing as I write this.  My son is in a good mood.  He's watching a video, and a dvd at the same time.  We have Charlie Brown on the TV and Chicken Little - on the DVD.  He's singing "Don't Go Breaking My Heart".  This "good" noise is accompanied by him rocking the bar stool so that the feet slam against the ground, bam, bam, bam.  As he is doing this he's also vocalizing some new verbal "stim" I guess it would be called "ooh, ooh, em, em, em".   It's driving me nuts.  I know he can't help it, but I cannot tune it out.  As he's doing all this, he's smacking himself on the forehead.  Another new one.  And when time allows, poking his index finger on the counter, tap, tap, tap, tap. There is a ritualistic series to these movements but I can't honestly say I've tracked it yet.  I have to admit though, many times this "good" noise, Spongebob yelling, Scooby Doo and Shaggy screaming all together, is too much for me.  I can honestly say I know what "sensory overload" is.  And I also think, that perhaps I am more sensitive to it than my son, or maybe it's a personalized thing, what bugs me does not bug him and vice versa. 

Bad Noise:  ca·coph·o·ny noun \ka-ˈkä-fə-nē, -ˈkȯ- also -ˈka-\

: unpleasant loud sounds

Best word to describe "bad noise" at our house.  I'm sure I don't have to explain "bad noise" to other autism parents.  The noise that goes with a meltdown, or at very least, an angry moment, a refusal or making no bones about the fact that my son is displeased with something.  LOUD NOISE. 

To the outside world though, all these noises must seem extreme.  I've decided to "classify" them based on the possible thoughts of those who might hear them and not know the full situation inside our house.

GOOD NOISE:

1.  Cartoon noise, Spongebob yelling, Patrick crying, or Squidward screaming "I gotta get out of here". 

As a female TV reporter who came to our house last week said "When we walked on the porch, we figured there was a special needs person living here".  "Oh, how intuitive of you!"

2.  Banging on the counter:  "hey I guess the neighbors must be installing new drywall". 

3.  Jumping on the bed:  "they must feed that kid too much sugar"

BAD NOISE:

1.  "But I Don't Wanna Go to School"....because this is a fully functional sentence most people assume he is just a spoiled brat and the "if that were my kid" thoughts and comments flow.

2.  A sensory meltdown caused by a loud unexpected sound  from either the computer or vhs :  the stray cats run from the porch

3.  A "who knows what caused it" meltdown including hitting and throwing objects:  "the herd of deer crossing the property have jumped the fence to get to the other side of the road."

4.  the combo meltdown:  Mom committed some cardinal sin by saying the wrong word, or the wrong ending to a script, or god forbid the DVD player doesn't work or the gameboy gets stuck, topped off with puberty and a ton of other emotional issues:  the real estate agent contracted to sell the $950,000.00 house built about 100 yards from us is realizing she will probably never sell the joint.  

But there was a time when it was quiet here.  About a year ago my son was very ill.  It was very quiet here.  An eery, scary, doom filled quiet.  Without the physical energy or the mental desire to participate, there can be no noise.  I longed for him to have the drive to engage in any of those "noisy" activities he used to.  I swore at that point, that when he recovered, I would not complain about the "noise"....the "autism noise" as long as he was strong enough to produce it.  

So, it's 10pm here and we have both Lilo and Stitch and Spongebob and Patrick on.  Yes, it's getting on my nerves but.....I'll take it!

Autism: A Christmas Kick In The Head

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 wishes...to 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. 

Autism: No Leftovers Please

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.