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.