"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.