Autism: Dear Lord - Give Me….

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By Pamela Rundall Mari

 

When my brother and I were small I can vividly remember my Mom saying “Dear Lord, Give me strength.”  This was most probably uttered when we were acting up or she was overwhelmed being a single Mom.  And we were typically developing children.

 

Now that I, as a single Mom, find myself raising a son with autism, I all too often repeat this phrase.  And the other day as I did, I thought, what else do I ask for heavenly assistance with?  

 

Dear Lord Give Me:

 

Strength - the strength to put in another day when I am physically, mentally and emotionally wiped out.  Give me the strength to hold back the tears, the fears and the downright cries of desperation when I feel I am losing the battle to assist my son with his challenges.

 

Patience - to wait while my son learns to wait for things that he wants immediately and cannot gather the patience himself to do so.  Wait for him to understand that not all things come as quickly as we want them.   Patience to deal with those in the outside world that do not fully understand autism.  Patience to answer their probing questions, their snide remarks and their ignorance regarding autism.  Be patient with them, for in many cases, they simply do not know.  They may seek, however, to understand if you have the patience to explain to them.  

 

Insight - give me the insight needed to decipher what my son is telling me is his own way not being able to format the words properly as you or I do.  Let me read into what he is trying to tell me in his language.  Let me know from being his Mom and spending almost every waking moment with him, those things which escape the perception of others around him.  I know what he means.  I know what he wants.  From experience.

 

Creativity - to keep his interest in learning new things.  To take a bad situation and turn it into a laughing moment by redirecting him.  To be quick thinking and use those things that are positive to him to change his mood from a negative one to a happy one in ten seconds flat.  To show him he is capable of using his own creativity to sing or create stories or art.

 

Humility - to ask for help when I need it whether it be from therapists, teachers or other parents.  When it comes to autism, none of us knows it all.  Be humble enough to admit this and never be ashamed to ask for advice for this is how, as autism, parents, we learn and help others.  

 

Bravery- to let go when need be.  Allow him to participate in events or activities which from a Mom’s viewpoint might seem a bit scary or difficult for him.  Encourage him to be brave but be brave yourself by not holding on too tightly.  

Pride - Allow me to be proud of what I have accomplished for and with my son.  There are many others who could not have done so.  Although at times it is difficult to realize this, every day we scale another mountain.  Instill pride in my child that he may know when he has done a good job.  Teach him that being proud of one’s self is a good thing when you work hard to get to a goal.

 

Time - give me all the time and more that I am allotted to be on this earth to teach, love, cherish, encourage and fight for my son and all those like him.  Time passes so quickly and there are days you turn around and wonder how you have gotten where you are.  But there is so much more to do.  Use it wisely but spend not too much worrying.  

 

So, Lord, give me and all autism parents these things.  

 

His answer:  “You’ve always had them.”

Autism: Hashtag # TAGS

 

By Pamela B. Mari

 

What is it about tags that drives our kids on the autism spectrum crazy?  Well, most people would say it’s a sensory issue.  Those scratchy, itchy tags feel like a million small biting ants against our children’s skin.  And unless you are on a daily shopping mission to find clothing manufactured without tags you will have to deal with them.

 

They come in many shapes, sizes, textures and variety of placements.  You have your normal behind the neck shirt tag.  Ok no biggee.  Easily removed with scissors.  Then you have the “sewn in” tag.  These come in many varieties.  You have the small horizontal, only sewn at the ends tags or the mega huge square sewn all around the outside tag.  This requires the parent to use the super duper tag remover tool known as a “seam ripper”.  The reason is these mega tags have over one million (or so it seems (seams)) (pun intended) stitches in them.  But, if you’ve got the patience you can persevere and get these stinkers out.  

 

Then of course you have the sneaky, “I’m sewn to the bottom edge of the shirt” type of tag.  Now this demon appears totally harmless and should really cause no sensory issues as it is usually affixed in an area that rests on the pant leg of the wearer, not the body itself.  

 

And parent be aware that these demon “tags” can make themselves known at the most inappropriate times.  Meaning the tag does not become a problem until you are: a. in the car,  b. walking into school, c. waiting for the bus in rain/snow or any given time or place that you do not, unless you are “super Mom”, happen to have scissors or seam ripper in hand.

 

However, these type of tags now bring us to another realm.

 

The “I JUST PLAIN HATE TAGS” TAGS.  

 

This is where the autism comes in as opposed to sensory issues.  This presents itself as a hate for tags on EVERYTHING.  

 

Tags on pillows.  Tags on stuffed animals.  Tags on mattresses.  Any tag has got to go.  I can only assume that this is a rigidity of thought issue.  I hate tags on my clothes therefore even though a tag on a teddy bear is not bothering me, it’s a tag and it has to go.

 

As an autism parent you will never be able to give “hand me downs” away because you never know for sure what size clothing you are offering because there are no TAGS!!​

 

So go forth and gather your tools for the war on these vile little critters.

 

TAG YOU’RE IT!

 

The Language of Autism : Or "I'm Gonna Boof You"

 

The Language of Autism or “I’m Gonna BOOF You!

 

By Pamela Rundall Mari

 

When my son was almost 3, he spoke his first word.. Blue.  Brought about by Blue’s Clues, the TV Show.  Prior to his autism diagnosis a year later, I thought he was just a late talker.  He would point to things and grunt.  He would stand in front of the TV, gesturing in concert with “Steve” of Blue’s Clues uttering jargon with the same intonation as Steve.  

 

The words came slowly.  Blue, cake, ball.  I used a technique called “recasting”. He would say “ball”. I would say “blue ball”.  Repeat the word the child said but add on one more word.  He would point to the cupboard and say in a demanding, frustrated tone “pretzel”,

“pretzel”.  I got so frustrated at his lack of sentences I blurted “I WANT A PRETZEL”,

Holding the desired item in front of him like the proverbial carrot.  He was so angry he finally yelled “I want a pretzel”.  YES..HERE YA GO SWEETY.

 

Fast forward thirteen years.   He is now 17.  He never stops talking.  Some of the problem though is that as much as 75% of what he says is “scripting”.  Repeating phrases, whole conversations from video taped movies.  He is capable of carrying on a brief conversation, if the topic suits him.  He soon drifts back to the scripting again.  

 

He makes up words, “neologisms” that represent other words to you or me.  Example:  If you bump into someone you have “BOOFED” them.  “I’m gonna boof into you.”  He refuses to say other words.  TREE is leaves, branches, trunks and roots. Every time he needs to say the word tree.  You can imagine how “Rocking Around the Christmas Tree” sounds.   “Winnie the Pooh and the  Honey Leaves, Branches, Trunks and Roots.“  A friend told me this description of a tree was also used in the Blue’s Clues show.

 

Bee is “makes honey lives in a hive”.  Pretty becomes “beautiful”. Which is ok until you get to “that looks beautiful big”.  Won’t say the number “four”.  Holds up four fingers and says “this one”.  Chicken is “hen that lays eggs and lives in a barn”.  Something - (An aversive word for him - he gets horribly angry if you say “something”.  He says  “different than the other”.

 

There are also word rules with regard to exact phrases.

Example: French fries, not just fries

Hamburgers, not burgers (unless it’s the line from the movie Pulp Fiction - “this is a tasty burger”.  That’s allowed.

 

Slippers are slippers and never to be referred to as shoes. The pretzels we buy in the “blue bag” are called “blue pretzels” and don’t you dare forget to say “blue pretzels”.                  It’s not the “Spongebob” Movie, it’s the Spongebob Squarepants Movie.  No shortcuts.

 

You could say it’s creative.  His own personal way of describing things.  But for our family it is a major cause of distress.  Let’s face it.  How many times in a day do you say

“I have to go upstairs to get SOMETHING”.   And Lord only knows how many times we have messed up and said “here’s your FRIES”.  No sooner does it leave my lips do I realize what’s coming next.  A major upset from my son.  There’s no blurting things out at our house.  You truly stop and think what you are saying.  

 

But the bigger question is WHY?  Why this self constructed set of rules with regard to words?  “I don’t like that word” he will say.  But that’s not the reason I believe.  A friend and I have somewhat narrowed it down to the concept that “you” the “speaker” are using it out of the context he first heard it in.  If he heard the words “down there” in a video where “Plankton” from Spongebob said “down there you moron”, you are not allowed to use that phrase unless you are repeating that script.  

 

So does it become a matter of rigidity of thought?  Is it his way of keeping things the same.  The “sameness” which seems to be so important to our kids.  The security of knowing what’s coming next.  The unexpected, change is so scary.

 

I try so desperately to convince him that these “words” can be used in other ways.  “Everyone is different” I tell him.  We all speak differently.  You cannot control what other folks say.  If you don’t like what they say, then you can ask them “please don’t say that word” but you cannot let it upset you.

 

At school the use the “let’s drown him in the word’ technique.  If he says he doesn’t like a word they go out of their way to say it, or even play a song with the word in the title or chorus.  The thinking is that over exposure to the word will result in him not being offended by it eventually.  

 

I honestly don’t have the guts for that method mainly because there is only one of me at home to deal with the meltdowns vs. six teachers/helpers/aides in the classroom.  I’ve not been very successful to date to say the least.  I tell him “words are just letters of the alphabet put together and letters cannot hurt you.”  

 

I long for the day when the old “sticks and stones can break my bones, but words can never hurt me” is a reality.

 

Or, am I barking up the wrong “leaves, branches, trunk and roots?

 

 

 

"When when"

When, when !! Blast it all….When!!!

By Pamela Mari 

My son likes to watch “The Sword and the Stone” the Disney movie about Merlin the Magician.  There is a scene where Merlin tells the sugar bowl “when, when, blast it all….when!!” as the animated sugar bowl continues to spoon sugar overflowing his tea cup.  The message - “enough is enough”. 

This too, is true for many of our kids with autism.  You have to plan accordingly.  You have to know when“enough is enough”  or you may be pushing your and their limits. 

This week we were scheduled for a “psych eval”.  A tedious task that must be done every six months in our area to determine if a child still “qualifies” for therapeutic staff support services, mobile therapy and behavioral specialist support.  Basically, red tape for the insurance company to make sure they are paying for“progress” on the child’s part.  My son has begun to hate these visits to the provider’s office because on previous occassions, he overheard another child on the spectrum making loud vocalizations.  He remembers that.  Every time we go now I’m biting my lip that he makes it though without meltdown.

He was doing surprisingly well.  Answering all the doctor’s questions about school and camp and Halloween.  She gave a nod showing her approval of his participation in the conversation. We were about 20 minutes into the interview at that point.  

I could tell he was nearing the “when, when” limit when the “sugar overflowed the tea cup”.  He became upset when the doctor said one of his “least preferred words” (he has a major aversion to some common words and gets very upset).   The glorious presentation turned into a major meltdown.  Ok, bad enough.  Sometimes it cannot be avoided but then, to make matters worse, both the doctor and my son’s Dad started calling his name to get his attention, thinking they could stop the meltdown.  

I am not on the spectrum but I had a major auditory issue with hearing his name being called from two directions in the room. “JOEY”…left…”JOEY…right” “JOEY…left”

“JOEY…right”.  It was a bombardment of sound that even I could not stand.  I don’t know what kept me from saying “Blast it all..WHEN!!!!!   Do either of you really think that by yelling his name together it will help calm him?  

We managed to “escape” the office in what seemed to be an eternity.   I would think that a professional in the field would understand the idea that some of our children do not do well in question and answer periods.  And, if they manage to make it through, don’t’ push your luck.  

In speaking with another autism mom today and explaining the situation to her she offered her thoughts.  She remarked that she has no problem at this point in her life in explaining when beginning an interview with her son, that if she sees her child becoming nervous or agitated she will, for the benefit of all concerned, immediately state they are leaving to prevent any such incident and unnecessary anxiety for her son.  I took that piece of advice under advisement. 

I had not however, practiced what I preached because I had also scheduled an in home visit on the very same day, two hours after the psych eval, by a state visual consultant for my son’s vocational goals.  

“Oh no”, I thought, “he will never make it through another interview today”, “I have to call her and cancel”.  I was wielding the sugar spoon and had not taken my own “when, when” recommendations.   About half an hour passed and things calmed down.  

My son made it through the second interview with flying colors.  I was amazed at his conversation with the vocational counselor.  She too smiled at his answers to her questions.   As the conversation ended he directed her in the blunt fashion some of our children exhibit “you have to leave now”.  And she did but we had accomplished two very important goals and survived. 

I will not, however, ever, keep spooning that sugar on.  I now know “when”. 

A Deal With The Deer My Dear

A Deal With The Deer My Dear 

by Pamela Mari

As I turned the corner to enter the cookie aisle at the supermarket I spied an elderly gentleman.  He might have been late 60’s early 70’s.  He used one of those “oh, I’m not getting much today” mini shopping carts.  He was examining a generic box of wheat thins.  There might have been one other item in the cart.  There was no missing however, the large bouquet of yellow daisies that stuck out of the front of the cart.  I could not resist commenting.

“Who’s the lucky lady?” I inquired.  His head came up to meet my gaze.  “My wife”, he replied “she’s at the cemetery”.  “I’m so sorry”, I said.

“ She was very sick, she’s in a better place”  “The funny thing is, “ he noted, “ she always hated fresh flowers”.  “ The damn deer eat them as soon as I leave them at the grave”.  “ I think she’s in cahoots with them”, he chuckled.

“I go there a lot” he said “it makes me feel better”.  “She was the best thing in my life”.

As we parted I felt so bad for him but I was uplifted by his sincerity and true love for this woman he has lost.  How lucky she was to have had him.   I’m sure she doesn’t mind the flowers now.

Autism: If Things Were Different

Autism:  If Things Were Different 

by Pam Mari

Today is my nephew's 16th birthday party. It's a surprise party.  His Mom, my sister in law, has been working her tail off to make it extra special.  She's a graphic artist. She designed the invitations and sent them via instagram.  The party color scheme coordinates with the colors on the invitation.  She is detail crazy and will drive herself to the brink of exhaustion to make sure every detail; food, games, music, pool toys and poolside seating are all creatively presented and arranged.

It's a rite of passage for her son and she wants it to be memorable for both him and his friends.  

My son, his cousin, is 17.  And has autism. 

Were we invited?  NO.  Am I upset about it?

ABSOLUTELY NOT. 

But, I can't help thinking if things were different how the day would go.

There are over 30 teenagers on the guest list.  It will be loud.  The music will be blasting.  My son could not tolerate this sensory overload. 

There will be girls singing along with the music. My son hates other people singing.  

There will be kids jumping, diving and running around the pool.  Swimming races.  Pool basketball. 

Pool noodle fights. Loud voices yelling "look out"!

Girls shrieking with excitement.  Splashes in your face.  Too much excitement and noise for my son. 

30 kids and not one of them would have an idea in the least of how to interact with my son.  That is not to say that they don't want to.  They simply don't know how.  You can't give a crash course in autism during a birthday party.  

My son would probably end up smushed in a corner of the pool by himself trying to avoid all the excitement.  I'd probably have to rush him into the bathroom after he got out of the pool as he doesnt' understand you just don't take off your trunks in front of other people, especially girls.  Somewhere along the line I would, with 90% accuracy, predict a meltdown.  

And the fact of the matter is, I just wouldn't want to go there.  I wouldn't want my nephew to have to deal with this at his special party.  I wouldn't want my son to have to endure this just to say he went.  

But I can't help thinking if things were different. 

"Hey", the voice on the phone says, " don't forget to tell Joey he has to come to Thomas' birthday party.  He would want his cousin here."

We would pack up and make sure we were there on time and bring a present that my son would pick out because teens know what other teens like. 

My son is a good looking kid much like his cousins.  I'm sure the girls would want to hang with him.  He's a good singer and would probably be singing along with the group to the blasting music.  

"Hey Mom, I tried some of that spinach dip Aunt D made.  I've never had it before.  I like it. Can you make some for us at home?"

"I appreciate the chance to sit and relax" my sister in law says.  "Where's Joey?" she asks. "Oh, I dunno he probably went for a walk with the other kids", "they will be fine, probably walked over to the shopping center to get some pizza".  

"Mom, can I stay here and you go home?"  "Aunt D is gonna make a bonfire and I want to stay until later". "Ok, text me when you are ready to come home", I reply. 

On the way home my son tells me about one of the girls he met at the party.  He says he might like to meet her at the mall and see a movie next week. 

It was a good day for him and his cousin. 

But instead, we will stay home.  We will make peanut butter and banana sandwiches.  None of which he will eat.  We will watch the same video ten times during that day.  I will try to avoid making loud noises or saying the wrong word or god forbid, singing.  And my nephew, hopefully will have a great time and his stressed out Mom will see the fruits of all her labors give joy to her son. 

But I can't help thinking - if things were different. 

Random Acts of Coffee

Autism: Random Acts of Coffee

By Pam Mari

My son has autism and a self restricted diet. I'm at McDonalds every day. We have one local McD's that he refers to by location "top of the hill McD's ".  The other day I went on my usual french fry run. One of the regular staff was on break and standing outside. We started talking. She asked about my son.  

I explained a little about kids on the spectrum and how many times due to sensory issues they only eat a few food items. I told her how my son used to like to feed the seagulls that invade the parking lot each summer. 

"I cry every stinking day" I told her,"because now he cannot see the seagulls. He can't see anything." I explained to her what we have been through in the past three years in regard to my son's vision problems.  She listened and then announced that she had to go back to work.  "I hope things get better for you" she commented. 

I decided to take the drive thru method since it was raining and as I approached the pick up window the girl said to me "do you want a cup carrier?".  "No," I replied "I only have one drink, the large Hi C". 

She held in her hand a coffee cup.  "Isn't this yours?" she asked.

"No not today", I replied.  "Oh well our manager said you usually get a vanilla latte so she made it by mistake so here, it's on us", she announced.

"Oh thank you" I said.  " Well she's right here, if you want to thank her" she noted.  She moved aside and it was the young lady that I had been talking to outside the McD's earlier.  

It made my day.  A Random Act of Coffee-A Random Act of Kindness. 

I told everyone I met that day how thoughtful it was of her to take notice of my sadness and make a small effort to brighten my day.  

You might say to yourself "I wouldn't know where to start" to do this for someone.  Any small gesture will do.  Take a shopping cart back to the store for someone.  Bring their trash cans back from the curb after pick up day.  Put a cupcake on a co-worker's desk.  Making cookies?  Take some to school for the office ladies.  

Know a Mom of a special needs child?  She may appear to have it all together as he plays chauffer, doctor,therapist and teacher to her child but trust me, there's nothing nicer than a little surprise from someone to keep you going.  

Random Acts of Kindness.  Random Acts of Coffee

Spread that stuff around-a latte!

Autism: Not Tonite

I wonder just for once if I could blog about something other than autism.  I do, sometimes, get tired of talking about it.  

It's been a rotten winter here.  Not a lot of snow, but every time you turn around it is snowing.  Just enough to be a bother.  Just enough to cause a school delay or school closing.  Lack of school and lack of structure is a nightmare for our kids with autism.   OOPS. 

I suppose I should be thankful that it is February and my son has just caught his first very bad chest cold of the season.  We've been off school since last Thursday and finally decided a visit to the Dr. would be in order, mainly to check the lungs as his cough sounds worse than an old man in a bus station. 

 I always prepare a written autism prep page for the staff and for the new Dr we were seeing this visit.  Because of my son's autism.  OOOPS.   I write a small sign "please don't say the word feel" it is a meltdown trigger.  The nurses are very kind and understanding.  

The new Dr. we saw this visit was not a good match.  Enters the exam room saying "Hi, Hi, HI, HI'. 

Well, you don't repeat words numerous times in my son's book of rules so that did not start us off well.  When he went to look in my son's ears, i was seated next to him and even to me, HE WAS LOUD.

"YOU HAVE TO LET ME LOOK IN YOUR EARS"  HE YELLS!!!!!   

Im old  but not senile yet.  Didn't I tell you when you entered the room that he is very sound sensitive??  Maybe that's too complex an idea for you, a doctor, to grasp.  My son started to cover his ears and rightfully so.  YOU HAVE TO HOLD HIS HANDS , he demands.   Okey Dokey Doc.  Just super bedside manner.  

I'm only allowed to spend ten minutes per patient the doctor tells us.  So, I'm basing this diagnosis on what I see right now.  If it gets worse come back.  OH THANKS I FEEL SO MUCH BETTER NOW. 

Autism or not, I don't think you are a great pediatrician.  Autism or not OOPS. 

What WE Celebrate- Autie Moms Be Like Yippee

"What We Celebrate" "Autie Moms Be Like - Yippee!!"

by Pamela Mari

What autism moms celebrate is not like what a regular moms whoops it up about.  Our thrills are smaller, later, and less frequent than other moms.  But we hang on to them and advertise them to our friends and other autie moms with a chest full of pride.  The first successful bathroom visit, a new word, a full sentence, a new food, a pleasant public event, any of these is cause for a major celebration in our world.  

Our house is similar.  My son is what is termed "verbal" meaning he can talk.  He never shuts up.  The catch is however, how much of this is meaningful "conversation"?  The ability to converse with another person is another highly sought after goal in our spectrum world.  

But sometimes they catch you off guard.  

This week as I opened the car door for my son's aide to guide him into school he asked my son "How are you today Joey?".  With one foot in and one foot out of the car, stepping onto the curb my son replied 

"I'm sick of this weather".  

My mouth was hanging open for a few seconds.  Damn straight kiddo!  This weather sucks and that's exactly what I would have said on a morning like this.  It was appropriate to the question.  It was timely in that it shot out of his mouth without a moment's hesitation.  It was delivered in an appropriate tone.  And it was uttered and just left as that.  He did not perseverate on the topic as he tends to do many times.  Just said it and forget it.  

So when your child comes home from school today and you ask him 

"how was school today Henry?" and he answers "class was boring" and walks upstairs remember for a child with autism, it's the greatest thing since sliced bread. 

Autism: I Just Called to Say "I'm Tired"

Autism:  I Just Called to Say "I'm Tired"

by Pam Mari 

Dear Autism: 

I got your voicemail yesterday.  I suppose I was busy when you called and to be honest I usually don't respond to voice mails because they are usually from bill collectors.  

But your question deserves an answer.  You inquired " I just called to ask how you and your son are doing, being that I'm in your life I figure I'm entitled to know". 

Yes I suppose you are right.  Let me enlighten you.  

I AM TIRED. 

I AM TIRED. 

I AM TIRED.

And since you seem to operate on a 24/7/365 schedule you must never tire.  It appears that you never tire of causing pain and disruption.  

You never tire of bringing tears to my son's and my eyes.  You never tire of stressing out marriages.  You never tire of stealing otherwise enjoyable moments from my son's life.  You never tire of tying my stomach in a knot first thing in the morning or the last thing at night. 

Perhaps your perseverance, stubbornness and never say die attitude is the only thing I could applaud about you.  But alas, for me, I'm freaking tired. 

Allow me to elaborate. 

As I stated before, I'm tired. 

I'm tired of the crying. 

I'm tired of the meltdowns. 

I'm tired of the sensory issues that make simple tasks like bathing, haircuts and clothing a major battle. 

I'm tired of the rigidity of thought you cause that makes it so I cannot utter certain words or phrases to my son because for him, they are only to be used in the context he heard them in - a video. 

I'm tired of hearing ten seconds of a video over and over and over and over again. 

I'm tired of trying so hard to teach simple social skills like why it is wrong to scream at ten at night. 

I'm tired of working so hard to get my son to take one little bite of a different food.  His diet stinks you see and I worry about his health. 

I'm tired of not having anyone over to visit our house. 

I'm tired of the looks and stares of others. 

I'm tired of fighting for a local classroom placement for my son since our local school doesn't provide an autism class. 

I'm tired of seeing friends on Facebook and other social media talking about their great vacation or dinner out or visit to the museum.  

I'm tired of scouring ebay for toys that ceased to be produced ten years ago.  (although I do consider it a victory when I find one).  

I'm tired of trying to explain to my son that they just don't make them anymore and watching him meltdown because he doesn't understand that concept. 

I'm tired of being hit. 

I'm tired of other family members who chose to walk out on us telling me "it's my fault".  I don't consider you to be "my fault".  You are just there, like a tossed away beer bottle on my lawn. 

I'm tired of looking like crap.  

I'm tired of not giving a darn that I look like crap.  I used to care. 

I'm tired of not laughing.  Of course, you would not understand that one.  Or maybe you secretly laugh at us.

I'm tired of eating or should I say "inhaling" my food.  There is always a behavior or a meltdown that needs attended to at that time. 

I'm 56 years old.  I'm tired.  I'm not dead yet but wonder how long I can carry on.  My son is 16. I'm tired of worrying about how he will survive when I'm gone.  

I'm tired of coming up with creative ways to thwart a crying situation or meltdown.  I'd much prefer to come up with creative party ideas or themes for college essays for my son. 

I'm tired of wiping butts.  However I will say that in this regard I consider myself lucky as so many other autism moms are still carrying diaper bags.  

I assume by now you get the picture.  I'm tired.  I'm exhausted.  Mentally.  Physically.  Emotionally.  Creatively.  

I'm tired in every aspect, regard and measure of my life.

Lastly, I'M TIRED OF TALKING ABOUT YOU!!!!

But don't despair.  I won't quit.  I won't give up.  I won't change my number.  Please don't feel obligated to call again.  I  will simply push the "ignore" button.  And I will carry on with the mindset that the things that appears to be killing me, may be the thing that will save me.

Autism: Soup du jour

Autism:  Soup du jour

by Pamela Mari 

I've seen it written by many autism experts that if a child on the spectrum expresses a desire to learn, or a talent for a given activity, that should be fostered and encouraged.  I suppose tonite's activity falls under that umbrella. 

My son was watching "Barney" wherein the story of "Stone Soup" was acted out by the children.  If you are unfamiliar with Stone Soup, the plot is that a traveler teaches a group of farmers how to make soup from a stone.  The idea is that by sharing everyone benefits. 

It's 9pm on Tuesday nite.  Second day back to school after summer vacation.  A lot of getting back into the necessary morning routines and getting away from staying up late and getting up late. 

I leave the room for a moment and come back to find a chef's delight of vegetables on my stove.  Celery, potatoes, carrots, tomatoes.  Joey has garnered from the fridge all the ingredients he wants to use to make "stone soup".  

As mentioned, it's 9pm.  We have to get ready for the next day of school and it's hard enough to get my son with autism to separate from preferred activities.  I can see this "super soup" making us way too late in getting to bed.  Why do kids always wait until the middle of the night to request help with a project?  What's wrong with asking for help at 4pm?  

He seemed to be however, proud of himself for finding all the ingredients needed for the soup so I went along with it.  He enjoyed adding the veggies to the pot and even went back to the fridge to look for additional goodies to add to the soup.  Plus it seemed to me to be a more thought producing activity than sitting at the VCR scripting.  

"You can eat vegetable soup and it will get rid of your "suds", he told me.  (Spongebob Squarepants refers to a head cold as "the suds". 

I think we set the land speed record for making a pot of homemade soup.  It wasn't half bad either.  

It was one of those "pick your battles" moments.  I'm glad I didn't choose to quote the Seinfeld episode and say "no soup for you!"

Autism: I Forgot The Jelly Beans

Autism:  I Forgot the Jellybeans 

By Pamela Mari 

So how do you keep a 16 year old son who is blind and has autism occupied at home during the summer?  It's not easy and the boredom turns into frustration and down right crankiness. 

Yesterday when my son remarked that he wanted to make a chocolate cake with chocolate icing I replied "yes of course we can do that."  He noted though that it must have the following decorations:  jellybeans, gumdrops, gunk of chocolate,  (gunk of chocolate equals chunk of chocolate) M&Ms and sprinkles and gummy worms. 

At the supermarket I hit the lose candy isle to garner my supplies.  Twenty-seven cents worth of gummy worms.  A small bag of M&Ms.  A small bag of gum drops.  The gunk of chocolate I knew I had left over at home in a zip lock bag from Easter when we received a large hollow  Easter egg.  

Today is a very boring day so I offered to make the cake with him.  He wanted no parts of "cracking" the eggs for the cake mix.  

"We have to make sure it cools properly" he mentions.  (A script from a video, but appropriate.)  As evening approaches I tell him he needs to help me decorate the cake.  He helps in spreading the icing on to the best of his ability considering he can't see what he's doing.  

I offer up the decorations.  Gummy worms.  Gum drops.  Sprinkles.  M&Ms.  For "gunk" of chocolate I used a few left over Girl Scout Thin Mint cookies - just as good. 

"We need the jellybeans" he reminds me.  

INSERT IMPENDING DOOM MUSIC FROM JAWS WHERE SHARK IS HEADING FOR BOAT. 

I FORGOT THE JELLY BEANS!!!!!!

Now thus far this has been a pleasant, no meltdown activity and I'm determined to keep it so.  Mommy brain goes into overdrive.  "Where in the heck can I find some jellybeans?".  I dig frantically through the cupboard thinking I may have stashed a few for just this type of situation but alas, none to be found.  Ok.  Think.  Think.  Jelly beans equal Easter.  I sprint down to the basement where I stash the Easter baskets.  I dig to the bottom of the plastic easter grass and retrieve the golden treasure-a handful of jelly beans.  

Blood pressure back to normal, I ascend to the first level of the house and deliver the required final decoration.  He is pleased and finishes decorating the cake.  I'm the only one who is going to eat the cake anyway and I'm gonna scrape off all the excess sugar before I do so it doesn't matter to me how old the jelly beans are.  

Note to self:  Mom's memory is nothing compared to my son's.  Always write down what you need from the store. The Easter Bunny only comes once a year. 

AUTISM: "HE'S NOT NORMAL" YOU SAY?

Autism: "He's Not NORMAL you say"

by Pamela Mari

This week I drug myself to my doctor on dual purpose.  The first, to have my blood pressure checked as per Doctor's orders, and second to ask why I've had fever, aches, chills and general beat by a stick feeling for a few days. 

Don't get me wrong, I LOVE my Doctor.  He's highly intelligent.  He's calm and compassionate.  He listens intently to complaints about things not necessarily connected to the reason for the visit itself. 

I feel fortunate to have found him.  

And, he always asks about my son with autism.  This visit we started talking about why a person would complain of not being able to have a bodily function like, "I can't swallow, I can't hear" etc. when no medical evidence exits to support that complaint. 

Then, out it came "Well let's face it" he said, "HE'S NOT NORMAL". 

nor·mal 

adjective

1.

conforming to the standard or the common type; usual; not abnormal; regular; natural.

It didn't hit me till I got home and I'm not sure if I'm offended or not?  Of course, I suppose my son with Autism is "not normal".  You would think though that someone in the medical field would be a little more word choosey when speaking to an autism mom.  What ever happened to "he doesn't perceive the world the same as we do" or 

"his reasons for things may not be immediately apparent to us" or

"we may not be understanding his rationale for doing what he is doing".  

Yes I am painfully aware that rewinding ten seconds of a video tape over and over again:  is not normal. 

I'm aware that only having a 3 item diet: is not normal

I'm aware that having a dislike for certain common words: is not normal.

I'm aware that pulling your shorts down at the McD's drive thru

because your butt is sweaty: is not normal. 

I am painfully, agonizingly, cant sleep at night, gray hair and wrinkles, 30 lbs lighter - aware. 

Or - is it just a word?  Should I take no offense to it? But then I think would someone say, "well SGT Baker, we know that you cannot ride the city bus because your lost your lower limbs in battle and you're not NORMAL?

Or would the sports broadcasters say: We are so proud of the American wheelchairs athletes and what they've accomplished here today even though they're not NORMAL?  HELL NO they would not.  So we do we only use that term for folks with developmental disabilities? 

Since I've left the Dr's office the wound from the knife I felt stab me in the stomach has healed a bit.  Do I owe it to the other autie moms to point this out nicely to my Dr?  Perhaps I will. 

DEAR AUTISM-REGARDING YOUR ACTIONS OF TODAY

DEAR AUTISM: REGARDING YOUR ACTIONS OF TODAY 

by Pamela Mari 

Dear Autism:

Regarding your actions of today I am compelled to contact you.  This morning at home was nothing short of heart wrenching and I thought I was going to pass out for sure.  These meltdowns are starting to kill me.  Thank go we didn't have school this morning, however, we did have a very important eye doctor appointment in the afternoon. 

By 1pm I managed to get my son back on the semi-quiet track and myself in a state of semi-functionality to get dressed for the appointment.  These visits are always hard for my son.  You couldn't have crawled back into your hole and left us alone for today?  

We managed to make it to the Dr's on time and the wait was not long.  However, when the Dr appeared in the room in his typical friendly manner, your compadre "sensory issues" slinked into the room along with you and when the Dr's voice when UP AND DOWN, it set my son off on a mega-meltdown.  I'm tired of having to bring an actual "sign" with me to appointments that says:

AUTISM TRIGGERS - PLEASE DO NOT SAY THESE WORDS AND PLEASE DO NOT TALK IN KINDERGARTEN CIRCLE TIME SQUEAKY VOICE!  

Sometimes I just plain forget to warn people.  You could have reminded me!  It was too late.  My son was off in a full blown, cursing, crying meltdown.  Dr. and I left the room and left Dad to deal with the situation. 

I try to retain my composure to go to the appointment setting desk.  I can hear my son, still escalated in the  exam room.  

I'll have you know though, Autism, that by handing me lemons today, I went right on and made lemonade.  I never pass up an opportunity to explain to any living body standing still, about autism.  I explain that the sound of the dr's voice lilting up and down is like the sound of fingernails on a chalkboard to my son.  

Most folks listen and appear truly interested.  Perhaps they are just being polite but I don't really care.  They may retain one thought that I have communicated and pass it on to someone else in their life.  One more person educated.  

So in short, I wanted to let you know that I understand your presence is always there, looming around to create another upsetting situation.  But be warned I will not allow you to masquerade under the label of "bad kid" or "terrible parent".  I will tell all that I meet of you. Don't let it go to your head - I don't paint a pretty picture of you. 

AUTISM: I HEARD SOMEONE CRYING TONITE

I heard someone crying tonite

A single autism parent

Tired

Alone

Worn out

Wanting out

Without solutions

For a better life for themselves

And their children

A desperate cry for help

From one who appears to have

The strength of many

But it is a silent scream

Some days some years

The pain outweighs the good

The rainbow. The silver lining

Cannot be summoned here

And the will to persevere dwindles

A friend extends a hand

Just one passerby views this life

And lingers for a moment

With only words to offer

The silent scream becomes pure silence

In word and action

And the cleansing tears flow

The heart will regain strength with the new day

Fueled by love

There is no stronger power

Share it widely, please

Autism: Who's Guto?"

Autism:  "Who's Guto?"

by Pamela Rundall-Mari

It was one of those autie mom days.  You know what I mean.  The I can't take one more meltdown, one more script, one more request to repeat a script "say it, say it".  The kind of day where you know if you lay your head down on the bed, you are so beyond comprehension tired, that you would be out like a light. And you know you can't do that.  You are on day and night shift....alone. 

My son with autism loves to listen to the "How to Draw" tutorials of Disney characters on YouTube.  "I want "How to Draw Stitch" by BTSPRO."  BTSPRO is an artist who I believe may have or still works for Disney.  He takes you step by step through drawing the characters and we actually have replicated some of them following his directions. 

"I want How to Draw Pluto", my son requests.  I validate his request by repeating:

"OK...HOW TO DRAW GUTO".   "GUTO"?  WHO THE HECK IS "GUTO".  I'm so tired it strikes me funnier than all get out and I actually snort laughing.  I can't stop laughing at this stupid mistake I made.  I'm trying to restrain myself and my son says "It's not Guto, It's Pluto".  But, at the same time I catch him chuckling too. 

He's laughing at the fact that I am laughing uncontrollably.  I push my limits a bit and ask "Are you sure you don't want GUTO?".  I'm so tired and the release of laughing was a pleasant experience. And the fact that we SHARED a laugh, a bit of common understanding, a moment of theory of mind, shall we say,was fabulous.  I understand that you thought it was funny and I think it is funny too.  This is a type of moment I wish for more often 

Today, again with the Ipod asking for "How to Draw" videos.  First it was "Chip" the Chipmunk.  Then "I want How to Draw Tale"??  He catches himself every so quickly.  "Not Tale, I mean Dale".  

"Did you say Tale?"  I ask.  "Are you sure you don't want Guto?"  I start to chuckle again.  He returns the laugh.  I'm gonna ride this one as long as I can.  And poor Guto, whoever you are, it's all at your expense and I'm loving it!

Autism: For Once Everything Turned Out Perfect

AUTISM:  FOR ONCE EVERYTHING TURNED OUT PERFECT
by Pamela Mari

On bad days with autism it's hard to remember that there are in fact, good days.  The other day was no exception but the outcome made it all worth it.

My son had been bugging me to play a computer game with him.  Bear in mind that he can no longer see due to a horrible health condition.  So I am his eyes.  The game was a a Jump Start brand game and a relatively old version at that.  We have a desktop computer in our sun room that runs an old version of Windows just to accommodate his "old" pc games.

We start the game.  You have to pick a pet and then play other "mini games" to win prizes for the pet.  Then you get to fly the pet to a "new home" via hot air balloon. There are about 8 pets total.

A few years ago I went to a Best Buy store looking for some item my son had requested and I told the salesman we had some of the series but my son "had to have them all".  "Oh, he's a completist" he replied.

Completist:  noun
collector who attempts to collect an example of every item in a particular field.

While this is true of my son and mom can attest to trying to provide all the items in each particular collection, that's another blog.

I would say he's also:

A Finisher:
1. To arrive at or attain the end of: finish a race.

You can't just stop in the middle of the game.  YOU MUST FINISH.

With that in mind we muddle through the game.  We've got a few "pets" under our belt when all of a sudden, the game crashes.

I felt my heart and all my other internal organs, sink to my feet.  I knew what was coming.  The meltdown ensued.  The offering of "we can start again" did nothing.  I suggested, wondering if it was the program itself, or the old computer that was causing the problem, that we try again tomorrow in the bedroom on that desktop computer.  As the words exited my mouth I thought "oh God, what if the program won't run on that one?"  It runs a newer version of Windows.  But tomorrow is another day.

So, as it will, tomorrow came.  Predictably so my son headed for the sun room to take another shot at the "unfinished game".  I quickly grabbed the CD and ran to the bedroom.  I inserted the disc and low and behold it loaded. "Let's try it in your room today" I announced. And so we did.

I'm so desperate for this darn game to work and to be able to "finish" that I start clocking how long it takes for each "pet" to finish his appointed duties before we move on to the next one.  My heart is in my mouth that we can finish the game before another "crash" happens. 

Ok so you have to make the balloon animals, and line up the animals in the correct size order and give the pet his treat and then you can fly away in the hot air balloon.  But being the "completist" that he is, my son has to use each option, that while available, is not necessarily needed to move on to the next animal.  Meaning, he has to stop and listen to "the itsy bitsy spider" and "barn house rock" before we can fly away in the balloon.

And I as the "mouse operator" on this mission am

"WHITE KNUCKLING" hwīt'nŭk'əl, wīt'-) also white-knuck·led (-əld)
adj. Slang
Characterized by tense nervousness or apprehension:

my way through this game.

We finally train and adopt out the last "pet" and the words that I seldom hear make the whole nerve wracking, nail biting experience seem like a walk in the park.

As he leaves the computer and walks to the kitchen my son says "For once everything turned out perfect!".
"Thanks for playing with me!"

Was it worth it?  Oh yeah and I could not feel more "complete".

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