Sunday, February 21, 2016

Autism: Dear Lord - Give Me….


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.
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.

Saturday, January 9, 2016

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?




Thursday, December 17, 2015

"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 whenenough 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 forprogress on the childs part.  My son has begun to hate these visits to the providers office because on previous occassions, he overheard another child on the spectrum making loud vocalizations.  He remembers that.  Every time we go now Im biting my lip that he makes it though without meltdown.

He was doing surprisingly well.  Answering all the doctors 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 sons 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. JOEYleftJOEYright JOEYleft

JOEYright.  It was a bombardment of sound that even I could not stand.  I dont 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, dont 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 sons vocational goals.  

Oh no, I thought, he will never make it through another interview todayI 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

Monday, November 2, 2015

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.

Saturday, June 13, 2015

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?

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. 

Friday, June 12, 2015

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!