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?