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. 

Friday, November 15, 2013

Autism: All Heart and Innocence

Autism:  All Heart and Innocence 

This week we had a tragic event happen in our neighborhood.  Down the road from us a young lady runs a riding stable and school.  I could walk there from my house.  The barn that houses the horses is very close to the road itself.  Many times you can see the children, some very young, leading the horses out of the pasture to the riding ring next to the barn.  People tend to drive extremely fast on this road, taking into consideration that is is a residential neighborhood.  When you drive up the hill to my house from the horse barn at certain times of the day, you get blinded by the sun.  

This week I heard the sound of the local fire department sirens and could see down the road to a large assembly of emergency vehicles in the area of the barn.  I wondered if one of the horses had escaped and caused an auto accident.  It was the next day that we learned that a young lady, a riding student 15 years old, had been struck by a car. 

I explained this to my son with autism.  He listened quietly as I told him that some folks drive too fast.  That we must never go near the road.  That mom and all other drives must concentrate when they are driving and that it is a serious job. 

Today I made the daily McD's run to get Joey's french fries.  When I returned I saw him make his way to the computer printer in his bedroom.  He extracted a piece of printer paper and brought it to the kitchen. 
"I want to make a card for the girl that got hit by the car", he announced.  

Now, my son loves to make cards for family members around the holidays.  When he was home sick the entire school term last year, he wrote letters and cards to his best friend in class.  The content was usually something related to "Blues Clues".  

I offered to help him with the message for this card:

"Get Well Soon"

Emily, I hope you are riding your horse soon!"
Love, Joey XOXOXO

I am soooo proud of him.  To think of this on his own, to empathize with someone who is in pain, to offer to do something for someone else, is monumental for him.

We made the card.  I inserted a little note with a picture of Joey for the parents to read and understand why it is such a basic piece of artwork.  

I hope the understand that for him it was a great accomplishment and that he hopes that their little girl gets better.  

Another example that our kids are truly full of heart and innocence.  Something to be applauded and copied. 

Friday, November 8, 2013


Autism:  30 Days of Thankful

So I gather there is a challenge going on during this month of November on Facebook wherein on each of the 30 days of this month of Thanksgiving, Facebook users must post each day, a thing they are thankful for. 

I thought I'd put a little extra twist on this and try to come up with 30 things I am thankful for with regard to my son's autism.  As I start here I wonder if I can come up with 30 as I, personally, do not view his autism as a "blessing" as some parents do.  I view it as a curse, a nightmare that has robbed him of his childhood and all the experiences connected with it.  I view it as a burden that he must carry for the rest of his life, a constant struggle to cope and understand that the regular person has no comprehension of.  

Therefore I challenge myself to find 30 things about my son's autism that I should be thankful for. 

1.  I'm thankful that I have the strength to support my son.
2.  I'm thankful that we currently have a superb autism class teacher.
3.  I'm thankful that there are professionals with the patience to
work in this field. 
4.  I'm thankful for the other moms and dads I have met fighting the same fight who offer help to me whenever I need it. 
5.  I'm thankful for my son's ability to speak, although in cryptic 
terms somehow, as there are children who cannot. 
6.  I'm thankful that my son can use the bathroom by himself, freeing me from diapers as there are children and adults who still need them. 
7.  I'm thankful that my son can brush his own teeth. 
8.  I'm thankful that my son can feed himself, although a severely limited diet, but nonetheless he feeds himself. 
9.  I'm thankful for the people who tell me from time to time, 
"you're doing a great job". 
10.  I'm thankful that my son has found a buddy in our Yellow Labrador Retriever and is capable of expressing concern about him. 
11.  I'm thankful for my sister in law who is caring enough to come running over to my house when a meltdown is something I cannot control and am worried about.  A fresh pair of hands is appreciated. 
12.   I'm thankful that my son can attend a regular school and get some exposure to the neurotypical kids in some situations. 
13.  I'm thankful for the new gym teacher who is a drill sergeant with the regular ed kids, but a gentle kind soul with our adaptive PE kids. 
14.  I'm thankful for people who do not criticize but are open to learning more about autism. 
15.  I'm thankful when a meltdown onlooker sticks up for my child amidst criticism. 
16.  I'm thankful that a class aide would actually seek out a job placement working specifically with my son. 
17.  I'm thankful that my son sleeps through the night and does not have any sleep issues like some folks with autism. 
18.  I'm thankful for our local Autism Society who provides support 
and events and activities for our kids. 
19.  I'm thankful for our local therapeutic riding center, CATRA which provides our kids with horseback riding opportunities. 
20.  I'm thankful for the Special Olympics Area M, Cent. PA who gave my son the chance to win the 50 yard dash. 
21.  I'm thankful that I've made some adult friends with autism who enjoy writing as I do and I thank them for sharing their personal experiences with us all. 
22.  I'm thankful when my son participates in an event and comes home and says "That was fun!".
23.  I'm thankful that I was able to create a small book for our kids with autism called "Curvy Herbie and Straight Nate" and that it is used by teachers, parents and professionals in the field and that it is able to help kids be more flexible.  It was a labor of love. 
24.  I'm thankful that my son is finally working on being able to express his emotions.  A long way to go but a start. 
25.  I'm thankful that this autism journey has shown me to be thankful for the little things we have and share, not clothing, not cars, not prestigious colleges, not soccer teams, just being needed and loved. 
26.  I'm thankful that as bad as my days with autism are I know that there are loving parents who deal with much worse as they care for their children. 
27.  I'm thankful for my mom who worked so hard to bring up two children by herself and by doing so taught me to never give up, it never hurts to ask and to believe in your own abilities.  It carries me every day. 
28.  I'm thankful that my son is sitting here in the kitchen singing.
29.  I'm thankful that I've had the opportunity to meet a group of people who honestly have no prejudice and treat people as they are treated.  They harbor no preconceived notions or biases about people regardless of race, color, creed or physical capabilities. 
30  I'm thankful that at bedtime, my son says, without being asked, 
"I Love you, you are my best friend". 

I'm thankful I made it to No. 30 but I realized it wasn't that difficult.  

Monday, November 4, 2013

Autism: Bad Luck or No Luck At All

Autism:  Bad Luck or No Luck At All

Ok so this week was Halloween and Trick or Treat.  My son missed this event last year due to horrible health issues that caused him to lose his sight.

So this year, we had to tough it out, autism or not.  Vision or not. We were not missing out on another Halloween.  Each year my son dictates what costumes we, as a team, will wear.  They are usually costumes that are not readily available on the retail market.  Mom ends up making them to the best of my ability.  This year we were Spike and Tyke, Dad and Son Bulldogs from "Tom and Jerry".  I used grey sweatpants and hoodies.  I made ears and mounted them to headbands.

My son made a new friend this past week at school,a little girl that also attends his school who was born without sight.  Her Mom very nicely invited us to come to their house for Trick or Treat.
Since we don't get many social invitations I wanted to take advantage of this offer.  She warned me they usually take a group picture then head out down the street.

We arrived on time amazingly and there were a lot of kids and adults.  The little girl greeted Joey and they announced they were going to take the group picture.  Our host came over and asked if this would bother my son.  I said "No, as long as you don't say the traditional "Say cheese" phrase.  He hates that and it will drive him to meltdown.  "Ok, we won't" she said.  Instead we got a very loud "SMILE".  This did not go over well with my son.  He stuck his fingers in his ears and was starting to become aggitated.  The photographer's cell phone flash was not working so we had to endure this about 3 times.  Argggh.

Ok, he kept it together.  All the kids started to scatter and head up the street to start Trick or Treating.  Off to the left a blasting chorus erupts with "HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU".
Now I'm thinking "why doesn't someone just shoot me?".  We are two for two now with the photo op and the most dreaded meltdown producer in our household "HAPPY BIRTHDAY TO YOU".  Can I not get a break here this evening?  I quickly turned his attention to the fact that the other kids were way ahead of us and we needed to go in the opposite direction of the singing.  THANK GOD IT WORKED AND OFF WE WENT.

We made our way down the street and around the corner in this neighborhood I know nothing about.  The group had long since passed us and proceeded onward.  We were on our own.

As we walked I'm vocally telling him about the bumps in the sidewalk and the cracks in the pavement so he doesnt stumble.  He has a hold of my arm and folks are probably wondering why I'm hanging onto a 15 year old kid.  At some houses I had to offer explanation as to his lack of sight when he did not readily reach into the candy bowl presented in front of him.  Most folks were nice and happy to help us.  We stopped to pet a doggy dressed in a super hero costume.  At one house that had a mega sized set of steps I asked one child to bring a piece of candy down for my son which he did.  Nice kid.

As we turned to try to make our way back to the car a lady stopped us at the intersection. This is honestly one of the very few times in my life I have been "Speechless".  I know if video taped it would have shown my mouth actually hanging open, no speech being produced.  This was brought about by her comment, out of nowhere:

"Oh, where is the other Three Blind Mice?"
"Uhhh, Excuse me?"  I replied
"Well there are two of you, so where is the other mouse of the three blind mice?"
Ok, at this point I'm frozen.  Thoughts are racing through my head. She could not possibly be that rude, I think.  Is she aware of the fact that our friend who invited us, is also not sighted.  Is she referring to her as the "Third" mouse?  Is she confusing our costumes to be that of "mice" and not "dogs"?  I want to grab her by the collar and scream " he is blind you stupid idiot".  But I didnt want to upset my son.

Calmly I replied :"We are supposed to be dogs, not mice".  We walked away.  I thinking my god, what other autism and social obstacles can we encounter tonite?  I thinking, my poor son, has held it together so well tonite despite the triggers he loathes the most.

After returning home, he said to me "I like the old trick or treat better" referring to the old neighborhood we usually frequent.  But I was proud of him for venturing into new territory and coming out the winner.

Friday, November 1, 2013

Autism: What Is It Like to Be an Autism Parent: The Blog Challenge

Autism: Being an Autism Mom/The Blog Challenge
I have an adult friend on the autism spectrum. He has recently expanded on his enjoyment of writing through, I hope, my prodding him to do so, and to use this medium to educate the world about autism as he lives it.
I challenged him to write a blog the other day, which he did and then, challenged me back. His request of me write: What is it like to be a parent of a child with autism? So Tom, this blog's for you.
What is it like to be the parent of a child with autism?
Best way to attack this is with a series of "one liners". In no particular order, neither ranked by positive or negative just as they flow from my frazzled brain.
Being a parent of a child on the spectrum means:
You haven't gone out to dinner in 15 years.
You can recite videos as well as your child because he scripts them so much.
You understand cryptic language such as "fireworks poops"
You haven't watched a full tv show in 15 years.
You read through every line of your child's IEP to make sure it includes what he needs.
You begin to talk in acronyms: IEP, BSC, TSS, ASD, PDD,
You are thankful that your child is able to use the bathroom finally, whenever (finally) is because some children cannot.
For you there is no such thing as just "jumping in the car and going to the mall".
You know that all tags must be removed from clothing.
You know that socks cannot be lumpy.
You want to grab that onlooker that during a meltdown comments "If that were my kid ......"
You want to hug the cashier that sticks up for your child during a meltdown by telling the onlooker to shut up.
Almost all your friends are parents of kids with autism.
You end up educating everyone you talk with about autism not on purpose just because it's your life.
You don't mind that your child calls you "parent" instead of mom.
You are thrilled when another child in school inquires about your child when they are absent.
Finding and having a good school teacher is better than winning the lottery.

You have found more patience and strength within yourself than you ever knew you had.

Saturday, October 26, 2013

Autism: Driving Under the Influence

Today's daily trip to McDonalds turned out to be an adventure in autism.  About 3 minutes out of the  driveway and down the road, the meltdown started.  Try as I migh to divert my son's attention it persisted.  When we came to a stop light at a very busy intersection I decided to take a longer route to a McD's further away to give him time to de-escalate.  No such luck.  I found myself pulling into the parking lot of a local shopping mall to be in a safe spot, off the highway.  

By now his voice is loud and there is banging on the windows, the dashboard, crying and screaming.  I scan the parking lot visually for onlookers.  I fear the day when someone, perhaps an officer of the law intervenes.  I propose it might go something like this:

(no disrespect intended toward our officers or first responders, somewhat tongue in cheek). 

My son: no, no stop singing Joey
Me:  I'm not singing.  Let's go to McDs.

Tap, tap, tap.
I turn to my left to see a officer standing by the car. 

Officer:  roll down your window Mamm.
Me:  Officer, there really is no problem. 
Officer:  Looks like a problem to me, what's going on here. 
Me:  This is my son he's upset. 
Officer, yes that's obvious, Hey son, stop banging on the windows. 
Me:  He has autism, he doesn't mean any harm. 
Officer:  whoa, hey buddy stop hitting your Mom. 
"What is the problem for him?"  Why is he like that?'
Me:  Hard to explain.  I said something he didnt like and this is what we call a "meltdown". 
Officer:  I saw you pull in off the highway.  Are you in danger?
Me:  No in times like this we seek a safe place to wait out the meltdown. Obviuosly the road is not a safe place.  Better to wait it out here. 
My son:  'A Clue, A Clue"....."I have to call Steve, I have to call Steve'. 
Officer:  "What is he saying?"  Why is he asking about clues?  Is Steve his Dad? 
Me:  No , the "A clue reference is from Blue's Clues...the children's show".  "Steve was the host of the show". 
Officer:  Why is he saying that though?
Me:  It has meaning to him.  At this point in his life I do not know what that meaning is.  Saying those things is his way of dealing with this distress he's feeling.  It's tough though because I can't call Steve as you well know. 
Officer: "Well he can speak I would not have thought he had autism". 
Me:  Some autistic children are verbal and some are not.   Meaningful communication is difficult for them and for some impossible. 
Officer:  'Doesn't it hurt you when he punches you?" "Isn't there anything you can do about that?"
Me:  yes, of course it hurts.  I'm only human.  You try your best to either block the blows or get out of the way, again, no where to go when you are in a car, another reason we pull off the road. 
Officer: "Don't you have anyone to help you?"  "I thought they gave aides to families with disabled children."
Me:  No most of the time I have no one to help me and that is true for so many autism families.  Funding is not there to pay for the assistance we might need and how often we need it.  It's not a budgetary priority for our State or Nation.  No one thinks of the futures these children and their families will face as they grow older.  We would like to be independent and not have to ask for help now so that when he grows he too, can be independent. 
Officer: "He seems to be calming down now." "Are you alright buddy?"
My son:  "Yes, we have to go to McD's now, what's the holdup.  You need to stop talking now. Let's go!
Me: "That's another thing our kids struggle with is social skills and manners.  Please don't take an offense officer.  He really is a good kid.  Life is just much harder for him. 
Officer:  "Is there anything I can do?"
Me:"Yes, please tell your superiors about this experience you just had.  Please tell them to sponsor training sessions for officers like yourself and our first responders so they know what autism can look like.  Please tell them to always ask the parents first what is going on if possible.  All children with autism are different and the circumstances also will be different.  We as a community need to know that you are educated as best possible and wanting to help us as we so desperately need it at times.  
Officer:  "I will do that and I hope you have a better day". 

I breathe a sigh of relief as he walks away and back to his car.  Another meltdown survived.  I wonder will he tell his fellow officers so they have just a glimpse into our world?   

Today's trip did not turn out as above.  We simply sat it out in the parking lot until it was ok to continue on our trip.  I want to communicate however when you see that mom or grandmom or dad in their car trying to calm an upset child please do not judge or criticize or offer nasty suggestions on how to raise a child, simply think that perhaps that person is "Driving Under the Influence:  Of Autism". 

Thursday, October 3, 2013

Autism: No Remote Needed

Autism:  No Remote Needed 

I've come to the conclusion today that if I were stranded on a desert island with my son with autism, I would never be bored.  I wouldn't have to think "gee, I wonder what's on TV?" because living with my son with autism is like having the TV on 24/7. 

He loves to script.  At this moment we are in the middle of the commercial for "The Muppet Movie".  You get both the play by play of the movie or video tape and the trailers and commercials that accompany each. 

Now, it's "Bear in the Big Blue House".  The "channels" change at will.  There seems to be no rhyme or reason to the changing of the channels, just whatever comes into his mind. 

The voices are amazingly close to those of the characters, including the british accent of one of our favorites, "Kipper the Dog".  Now the channel has changed to "Stuart Little".  

I guess I should be thankful he's not into professional wrestling or monster trucks because not only do you get the "script" of the show, you get the sound effects. Whether it be a "crash" a "bang" a "boing" or the most dreaded by me, a "scream" they are all delivered with perfect timing to fit the script.  

The hardest part is trying to teach him that the neighbors may not prefer to hear "The Rugrats" belted out at 10 at night.  I've taken to shutting the windows lately to prevent the sound from lofting across the street.  In the time it took me to just step outside to smoke a cigarette, we've changed from Lilo and Stitch, to the line in Rugrats Movie where Mrs. Pickles is in labor and the Dr says "alright Dee Dee, you can do it...push now".  "Now on video" . 

But sometimes he uses the script in realistic situations.  I remember one day we had to go to the radiologist for an xray of his wrist.  Killing time in the waiting room is not easy for a child with autism, and Joey began scripting from Spongebob.  Across the room a distinguished looking gray haired gentleman sat reading the New York Times.  Joey left his seat and climbed into the chair next to this man.  "Excuse me sir" he said.  "Oh no" I thought. I knew exactly what was coming. 

"I hope my horrible ugliness won't be a distraction to you".  He had delivered the "we're not ugly, we just stink" Spongebob and Patrick script to this man waiting for his own xray.  I rushed over to take him away from this gentleman.  I'm sure the man had no idea in you know where what this kid was talking about. He had played it out exactly as Spongebob did when he tapped the man in the seat beside him in the theatre on the shoulder. 

As I wrap up this blog we are now on "Scooby Doo and The Cyber Chase" commercial.  I know there are "behaviorist" explanations for why he does this.  He is capable of having a brief conversation.  It is not his preferred thing however.  He would prefer that you participate in the scripts and god help you if you miss a word or get your lines out of order.  His memory is incredible.  There must be a way to use this skill in a more productive and possible vocational manner. I struggle with these questions daily.  

But right now it is late and I need to find the "mute" button on this remote.  

Sunday, September 15, 2013

Autism: Up, Up and Away

Autism:  Up, Up and Away 

Ahhh, a quiet Sunday morning in beautiful Central Pennsylvania.  Birds chirping, clear blue sky and a bit of chill in the air.  I awake at 7am and prepare to face the day until 8am by having too many cups of coffee. As I stand out on the porch, I scan the horizon for the dreaded "monster", that one thing that drives my dog completely out of his gourd.  I try to kill time before letting him out to do his business so that it is not too early  should he bark and disturb the neighbors, but  early enough to avoid "the monster".  The "monster" usually appears without warning for you or I, but he can hear it coming miles away before the human eye can detect it.  

Ok, all looks clear and I open the back door and he takes off quietly to take care of business.  I call him back in saying "time for coffee".  Ahhhh, a sigh of relief.  All is well and we can all wake up now as most folks do on a Sunday morning. 

My son with autism is still in his bed, covered up with his blanket pretending to be a ghost.  As with every day, I hope for a day free of meltdowns, no upsets or triggers, a somewhat "normal" day. 

Hate to disappoint you Mom, it isn't gonna happen. 
(YOU GET THE PICTURE).  The dog is in full blown barking meltdown. 

He is running around the house, sliding around on the hardwood floors, barking his hyperactive head off at 50,000 decibels. I love my dog, I will protect him from anything as I believe he would do for me.  Labor Day weekend, he injured his right hind leg chasing "the monster".  It has taken me 10 days of semi house confinement, massages and assisted walking to get him back in shape.  I see him shrugging off any residual pain to zoom around the house, looking out the windows, determined to get to the monster. 

NOOOOO, Kipper stop! I try to stop him from over exerting the leg as he runs and jumps to see out the windows.  (By now the suspense must be killing you, "what is the monster?".  It is the hot air balloon that flies over our house.  Beautiful to behold, my dog views them as the coming of the "aliens".  The owners actually landed the balloon in our back yard one year.  My son and husband loved it, but it drove the dog to froth at the mouth.  "What's Kipper barking at?".  My son calls from the bedroom trying to be heard over the barking. 

"No, Kipper"I demand again and that's where the explosion ensues. 
"No no, you're screaming at me saying "no".  My son now, is in full meltdown.  Banging himself in the head, crying and screaming. "no, no".  I try to tell him I'm not telling him "no", I'm telling the dog. Too late, we are off and running with a full blown meltdown.  I do not know what the aversion to the word "no" is.  For him I'm sure it is connected to some script in a video.  Perhaps it was the level of my voice when yelling at the dog.  Mom error.  I've not respected the  "autism rules of the house", certain words that he cannot tolerate.  My heart sinks.  Please God, let it be a short lived meltdown.  He moves to the kitchen where he proceeds to vent his anger and frustration by banging on my kitchen counter.  He and the dog are now in full concert with each other with regard to noise.  I try the "hand squeeze", nope ain't working.  He's gotta work it out for himself, he's gotta vent, and de-escalate himself.  

After about what seems like an eternity, but in reality only about 20 minutes, things calm down.  The dog doesn't understand why I'm giving him dirty looks for something he cannot control.  He is scared of "the monster" and he doesn't understand what it is and what it could do to him.  He lacks the language to explain his fear, frustration and sensory overload that "the monster" creates.  

Not unlike my son's situation with autism.  I understand them both. 
But on mornings like this I can't help but think "Mr. Monster balloon, would you stop and take me up, up and away?"

Tuesday, September 10, 2013

Autism: "My Butt is Sweaty!"

Autism:  "My Butt is Sweaty!"

This blog falls into the "you gotta laugh" category because living with autism, if you don't allow yourself a laugh now and then you will self destruct. 

So just another day on the autism road.  I pick Joey up from school and as our ritual would have it, we head for McDonald's to get his french fries and orange Hi-C.  Still in the 80's here in Pennsylvania so the kids are wearing shorts and t-shirts to school.  Not quite autumn yet.  As we are driving along he's in the front seat next to me. 

"My butt is sweaty", he proclaims.  I've heard this many times before.  I assume the nylon material of the shorts causes him to sweat.  The fact that the car seats are leather doesn't help either.  "Hang in there" I suggest, "We'll be home soon and you can change clothes". 

We arrive at McD's and I give the drive thru lady our order and proceed forward to pay, then head for the pick up window.  I'm more concerned with planning out how to hold a bag of fries, a large drink and an ice cream cone, than I am with what's going on next to me. 

"Here you go" the pick up window girl announces, and I reach out to take the ice cream cone from her hand, turning to give it to Joey as my eyes fall on his lap. 

In true autism style, with no concern for the social situation surrounding him, he has lowered his shorts to alleviate the "sweaty butt" syndrome.  My mouth hanging open, ice cream in hand I just want to shout "pull up your pants"!  Something holds me back.  I hand him the ice cream and whisper "pull up your pants".  On the slight chance that the girl at the drive thru didnt notice I decide not to bring any more attention to the situation.  

But then as usual, the thoughts start racing through my head. "Oh my god, what if she did see?"  "What must she think of him?"  "What is she in there telling the rest of the staff at the restaurant?"  We do have a group of young people and the manager at this McD's that know us and know of Joey and they probably would come to his defense but these workers all seemed new lately.  These are times when I want to have a big Autism Awareness Ribbon plastered onto the driver's side of my vehicle.  If I had the money truthfully I would have my vehicle painted in puzzle pieces from bumper to bumper to stop the stares, questions and remarks we autism parents know all too well. 

As we drive home to a point I marvel at the logical way he solved his problem.  If we did not live in a society with rules and norms that we follow the obvious solution to your butt being sweaty is to remove your clothes.  It just plain made sense to him.  

I remember a teacher in high school asking the class one day:
"why do you iron your clothes?"
"because they are wrinkled", every replied. 
"do they not fit because they are wrinkled?" he asks'
"are they dirty and smelly because they are wrinkled?"
Another rule of society that truthfully has no practical basis.  We do it because society tells us to, that's they way it is and that is what you must do to fit in.  For a person with autism this must be horribly confusing because it is not based in logic.  It requires that unspoken desire to gain the approval and acceptance of others that many folks on the spectrum just cannot grasp.  

Obviously we must have some rules in order to survive without total chaos but think how much more relaxed we would all be without so many of them.  

Friday, August 30, 2013

Autism: Thera-putty In My Hands

Autism:  Thera-Putty In My Hands

Today was the third day back to school for my son with autism.  We've been off for a year due to horrible health issues that have led to him losing his sight. Getting back into the swing of things and being amongst people are all things we must relearn.  

My son has some of the typical sensory issues with clothes many kids with autism do.  Hates tags in his shirts or shorts.  Doesn't wear underwear anymore because a counselor suggested we simply get rid of them to stop him from rearranging the underwear because he was sensitive to it. 

He never was fussy as to what he wore even when he could see it.  He preferred sweat pants over jeans.  Didn't demand name brand expensive sneakers.  Probably would have worn the same sneakers till they fell apart and getting him to try on a new pair was a battle.  A smile would appear if you produced a cartoon character t-shirt such as "Ren and Stimpy" or "Dr. Seuss, Green Eggs and Ham".  Other than that, what company logo was on the shirt made no never-mind to him.  Being "Cool" or fitting in with the other kids in school with regard to fashion just didn't matter. Im not ashamed to say I shopped at Target or Kmart.  He always looked clean and neat and appropriate. 

So on Tuesday after we re-appeared on the school scene and I dropped him off, I made a trip to the local outlet stores.  Having been stuck in the house for over a year, I was thrilled to be flipping through the sale racks of clothing in the Aeropostale store.  I was even more thrilled to find that the shirts that originally marked $34.50 each had been knocked down to $7.99 and $5.99.  Woo-hoo.  I'm on a roll.  I gather up as many as I can find in the XXL size and head for the register.  "You know," the sales clerk comments, "that those are another 50% off the lowest price on the tag."  So that means I ended up paying $2.00 and $3.00 for these shirts that originally sold for $34.50.  And they are a teen friendly, accepted and desired brand.  I took my bounty to the register to check out and was also given a $10 off $50 purchase coupon so I ended up spending $40.00 for about 8 shirts and a $54.50 hoodie!  Yes, I am the bargain queen!  And he will be with the "in crowd".  

The next day he wears one of the new shirts.  Looks good and I am happy to see him make his way into school on the arm of his personal care aide/sighted guide.  At dismissal time, it was another story.  As he climbs into the car I notice a large smear all over the front of the shirt.  What is that "schmutz"?, I ask myself. 

1. schmutz

Used by Jewish mothers to identify that you've got some kind of crap on your face
Mommy: You've got some Schmutz on your face, Oy! 

His teacher remarks, "It's Thera-putty", sorry. 
I didn't pay much attention at that point and we headed home. But when I went to attack the dreaded "schmutz" on the shirt I started to do a slow boil. 

I just bought this shirt.  Yeah I only paid $3.00 for it but it's the principle of the thing.  I texted the teacher "how do you get this gunk out of clothing?"

"Let me ask the occupational therapist", she replied.  For those of you who don't know what Thera-putty is, allow me to explain.  It is a stringy sticky mess of stretchy stuff that OTs use for kids with ASD to give them some hand manipulation work.  Lord knows what it's supposed to do in the long run, other than make a mess. 

"First, she texts, get an ice cube, rub on spot, put some WD40 lubricant on spot, rub some more, get a butter knife and try to scrape off, then rub with rubbing alcohol, then swing a dead chicken over your head while hopping on one foot". (my sarcasm) Point being, good luck getting this mess off your clothes.  And if you can get this stuff off I will nominate you to take Mr. Clean's place on TV.  The shirt is ruined.  

Ok, enough crying over a spilled $3 shirt.  A new thought entered my mind.  OMG, did he actually walk around school all day looking like that?  Was he paraded through the hallways so the other kids, let alone the faculty, viewed the "schmutz" all over his shirt?  My mind conjures up conversations being held about the shirt.  "What's with that kid?"  "Isn't he in the autism class?"  "What the heck is all over his shirt?"  "Why do they walk him down the hall like that?"  "Why does he wear those sunglasses all day inside?" "He probably couldn't see that his shirt was messed up when he put it on this morning." "What type of parent would send a kid to school looking like that?"  
My heart starts to ache over the endless possibilities of making fun that he probably endured over the "schmutz shirt".  

But then a wave of realization sweeps over me.  Having autism and the sub standard social skills that can go with it, he probably was not aware of any such social faux pas.  He could not care less if there is gunk on his shirt.  He is not out to please anyone.  He is not out for their approval.  Sure if someone says "I like your shirt" it may or may not please him, but it is certainly not what drives his day.  "Judge not lest ye be judged" is his mantra, because he does not discriminate against the few friends he has, be they black or white, skinny or fat or fashionable or fashion geeks.  In this case, the autism shields him from hurt.  

But this turns my thoughts toward another question.  Is he better off knowing or not knowing?  Is his lack of understanding sparing him future emotional turmoil that we all experience? My mom used to say:

"where ignorance is bliss, tis folly to be wise".  Perhaps that is true. 

Friday, August 16, 2013

Autism: " I shall call him "Brutus"

Autism:  " I shall call him "Brutus"

There is a young man of about 25 who works at our local supermarket. I shall call him "Brutus".  Is his name really Brutus?  Of course not but it got you to read this blog.  Let's call him Sam.  

Sam works as a bagger and general helper at the supermarket.  He is a large young man.  Would have made a good linebacker in high school.  Sam is one of the hardest workers at the store.  Some of us understand Sam, and some do not.  Some stare and crunch up their faces with a questionable look.  Sam, of course, has autism. 

On any given day you will find Sam at the end of the checkout lane conversing with himself.  He has a vast knowledge of sports teams, knowing the dates they played, the score and the upcoming schedules of each team.  He has a habit of smacking his hands together with such force that the sound resonates through the supermarket.  I often wondered if this was a coping skill taught to him to use when he gets nervous or if it was a replacement given to him for a more offensive behavior.  Or maybe for him it is a sensory issue. 

One day as he was bagging I said "So Sam, how are you doing today?"  He immediately put down the item he was bagging and walked away.  Oh my god, I thought to myself, you scared him and he had to walk away to avoid reacting negatively to it.  Then the cashier told me " he won't touch pickles"..."if you buy a jar of pickles he won't bag it".  
I breathed an autism mom sigh of relief.  I was having an "I should have known better moment there for a bit".  

Sam will talk with anyone.  Usually you can hear him spotting folks in the market he knows.  He will call from two aisles over "Hello Mrs. Brandy Miller" "how are you today".  "Mrs Brandy Miller are you still working at the bank".  "Nice to see you Mrs. Brandy Miller" "ok" "talk to you soon".  The problem is, as I noticed today, sometimes the person to whom the greeting is directed, fails to respond.  I find this sad.  

Today as I entered the checkout line, Sam was in a different position from his usual "end of the checkout" bagger's spot.  Sam was a customer.  "Sam", I called.  "Are you doing your own shopping today?"
"Yes, I am, how are you today, thank you I'm doing very well" he replied.  Sam had a decent size cart of groceries.  

My curiosity was aroused.  

Today as he had his groceries rung up he conversed with the girl running the register. "Ashley, do you work tomorrow?"  "I work ten to two Ashely", "Do you work tomorrow Ashley?".  "Ashley I will see you tomorrow when I work ten to two." "Ashley, what hours do you work tomorrow?" 

I wondered if he was really doing actual shopping or a practice run. I perused the groceries he had selected.  Many juice boxes.  Jug of lemonade, ice tea and a bottle of vitamin water.  A link of some type of smoked sausage.  Two or three "lean cuisine" type dinners.  He bagged it himself in the "reusable" "keep it green" type of plastic shopping bags the store sells.    And two Sunday newspapers. The total $133.00.  

"I'm going to pay for my order in a minute Ashley". "Ashley I will pay for my order in a minute".  He fished his debit card from his wallet. "I'm gonna pay for my order Ashley".  His gaze changed to the computer screen that shows the total as the register records it. "Ashley how much was that newspaper?".  "It should be $1.75", he made note to the cashier. "The Carlisle paper is $2.00 and the Harrisburg paper is $1.75.?  The cashier was confused.  "There are TWO newspapers there." I pointed out to her.  Sam knew the prices of both and noticed that the register had only rung up the one on the bottom as she slid them over the scanner, since they were one on top of another.  "I'm gonna pay for my order now Ashley".  He slid his debit card through the machine, entered his code and announced "I'm gonna go put these in the car now Ashley", "I will see you when I work ten to two tomorrow, I will see you when you are working tomorrow Ashley". "Have a nice day Ashley, ok bye bye."

And he departed. 

I wanted to grab the lady behind me in line and shake her saying
"Did you see what Sam just did? He bought his own groceries and paid for them correctly.  He has a job, he earns his own money and he came in here unescorted and did his own shopping.  Do you understand what a great accomplishment that is?" But of course I could not.  It would take me hours to explain to the average person not aware of autism, how much work, bravery and fortitude it took for this young man to get to this point in his life.  My frozen foods would melt in the time it would take me to explain that a grocery store full of crying babies, "deli order # 23 ready" loudspeaker announcements and crowded aisles and a sea of colors can be a nightmare for our family members on the spectrum.  So, I smiled to myself for his achievement and paid for my own order.

As I exited the store, the idea crossed my mind that I would love to be able to speak with his parents.  I would love to ask them how they managed to teach him all they had that got him to this level of independence.  I scanned the parking lot hoping that perhaps he was still loading groceries into the car.  I swore to myself I would approach them and congratulate them and Sam for his job well done. 
But alas, he was gone.  

Every time I see Sam at work at the market I am reminded that I too have a son with autism.  I wonder can I teach him what he will need to know to at least reach this level of self sufficiency?  I suppose it will be one day at a time and one "jar of pickles" at a time.