Mommy in Pieces

Just a mom that wears a cape under her street clothes.

Archive for the category “awareness”

Déjà Vu – A Diagnosis Once More

We have been here before. Just 16 months ago we got the confirmation. You never forget hearing those words for the first time. “Your son fits the diagnostic criteria for Autism.”  He is so different that his big brother, most people scoff at this diagnosis.  But there is a wise saying, “When you meet one child autism… you have met one child with autism”

The difference this time… I know more.  I am less scared.  Alex is now enrolled in the most amazing, intensive ABA program.  He is in the same classroom, with the same staff, that Ben had last year.  He is making great strides, he is talking and interacting.

The diagnosis of Autism Spectrum Disorder is not a death sentence.  For this family and many others, the diagnosis is freeing, it gives answers, it opens doors.  The diagnosis has helped us to find our little lost boy…

Small Victories

     Ben doesn’t love food.  He could go long stretches without eating.  He just doesn’t think about eating as an important part of life.  When he does eat, it is in very limited quantities and from a very small group of foods.  He was a sweet tooth and is a crab monster.  We have spent a lot of energy and therapy time working on requesting food, staying at the table, eating foods that he doesn’t love.  But still eating is a challenge.
     Ben as eats in cycles.  He will eat pudding every day for three weeks.  Then it becomes equivalent to liver and haggis.  Another food takes its place.  But Ben will never give us a clue what the next food of choice is!  Eating is just a frustrating topic in this household!  But maybe the path is changing…..

     This morning, while I was making my breakfast (a toasted peanut butter banana sandwich – ritual the morning of a long run), Ben was watching me intently…  “Can I have?”  I don’t think I registered what he was saying at first..  “Mommy, can I have?”  He was clearly pointing at the bread in my hand.  Ben wanted bread??  “NO! Sandwich!”  I can with almost 100% certainty credit this word and this desire to a game he plays on the iPad.  He has to feed the animal the foods that appear over their heads.  If you give them the wrong foods, they make silly faces and sounds.  He LOVES this game.  When he plays it, I get to hear my favorite belly laughs.
    Grabbing the jelly from the fridge, I have a shadow as I go to the counter..  Time to break out a kitchen gadget!  I have been waiting for the moment, when I get to make my little boy a sandwich.  (I know if seems silly, but when your child doesn’t eat like a typical child, these moments become huge in your mind.)  I grabbed my Pampered Chef Cut and Seal and got to the important task of fulfilling this request.  Trying not to get my hopes up that it wasn’t a fluke request, I of course put too much jelly in the center.
    
     Sandwich finished, on the plate it goes and I turn to see Ben still standing next to me with the biggest Cheshire Cat grin.  His little hand reaches up – presumably to take the plate to the table… and the sandwich is GONE!  Before I can blink, he is curled into the corner of the  couch nibbling away like a squirrel!  Normally he would be told to sit at his table, but I was too excited that he was actually eating what he asked for!  He was eating a sandwich, just like any other 3 year old boy on a Saturday morning.. sitting on the couch in his under-roos, watching cartoons… Life felt normal!


Patience Is..



“Mommy, how many dinosaurs?”

     ” One.”
“Mommy, how many horse?”
     ” Six”
“Very good.  How many butterfly?
     “Nine”
“That’s right mommy!  How many owl?”
     “Three”
“Mommy, how many elephant?”
     “Four”
“No.  Try again.  How many elephant?”
     “Five”
“Very good mommy.  How many horse?”
     “Six”

     The poster has ten animals on it and eventually we get through all ten.  How long it takes is up to me and how my memory is faring.  As soon as one round is finished, the arm on the record resets and we are right back to, “Mommy, how many dinosaurs?”

     It seems like a great conversation.  Here is Ben, communicating and having a true back and forth interaction.  But alas, here is where Autism rears its ugly head!  Welcome to the world of Echolalia.  Not familiar with this word?  We weren’t either until we had been ushered into this new world.  “Echolalia, sometimes referred to as “scripting”, is the repetition of words, phrases, intonation, or sounds of the speech of others, sometimes taken from movies, but also sometimes taken from other sources such as favorite books or something someone else has said.” (Source: AutismSpeaks.org)

     Ben has the amazing ability to make this rote speech sound natural, organic, and spontaneous.  The only difference, is that we have been through this exact sequence of questions and answers 23 times this evening and 1.3 million times before it.  The intonation never changes.  The combinations of praise and rebuff never differ from the script.  The only thing that does change is my ability to remember which numbers belong with which animals.  As with most kids, this kind of interaction always occurs when your hands are in a soapy sink of dishes.  


     Patience is… responding the the 1,300,001st question, even though the answer hasn’t changed since the previous 1,300,000 times.  Patience is… answering over and over to feel some semblance of a normal conversation with your three year old.  Plus.. how can you say no to that face!

     


 I am currently in training for my FIRST half marathon and I making this run into a fundraiser.  I will be running to benefit the children of Variety Child Learning Center.  Please check out the info!

The Person… First

“You know who I am talking about… That ___________person”

“She is __________. I think her name is Sue.”

Why must we put the label first?  Why do we let a label define us?  We all have such long lives to live and most of us will go through different incarnations. One day, one label suffices and the next day it is totally wrong.

What about a child?  How about the child with a developmental disability?  Why do we let their diagnosis define them?

I have been lucky enough to be give two major blessings in my life. My sons bring so much joy and light into my life. They teach me new things every single day.

My oldest, Ben is an incredibly sensitive and empathetic little boy. He knows just the right way to give you a hug when you are sad. He watches over his little brother and makes sure that he doesn’t stray too far from his best friend the hippo.  He loves Thomas the tank engine, and Curious George and the movie Cars. Ben has the deepest most contagious belly laugh and a very special twinkle in his eyes.

Ben lives in a special world that we are a just lucky to be visiting. He sees the truth behind everything. He knows the deep down meaning of love.

Ben sounds like a typical little boy who loves to run and play with his toys. You wouldn’t be surprised to hear that his nickname at school is “The Mayor”.  There are so many adjectives to describe Ben, that Autism is always LAST on the list. His diagnosis does not define his identity. It does not change who he is, it supplements it. The word autistic is never placed before my son.

The concept of person first language is to emphasize the person rather than the special need, the individual and not the diagnosis.  By changing the way a sentence is structured the focus changes with the intent of focusing on our commonalities.  With person first language Ben going from being, “My Autistic son Ben” to “My son Ben who has Autism.”

 To see more information on how you can utilize person first language check out this simple chart People First Chart

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