Mommy in Pieces

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

Archive for the category “autism”

A Little Challenge

I don’t often feel like have two amazing boys with Autism means that I am missing out on many parenting experiences.  However, there has been this one place in my heart that hurts deeply.  When I see the pictures of my friends with children that have donned a hat and uniform.  Parents that witness that first connection of bat and ball.  The quintessential American sport of baseball.   Sitting on the bleachers in the warm spring sun, cheering despite missed hits and jumping like a crazy person when they get their hit.  I had written that all off, that it wasn’t in the cards for my boys.

I am so lucky to be proved wrong!  We are blessed to have our own Challengers Baseball League in our backyard.  A BIG strong league of so many children of different abilities.  District 31 has been around for more that 20 years and has helped so many kids feel the grass and dirt and know the joy of making that out!

Yesterday was opening day.  While it was a little on the chaotic side what with wheelchairs and stimming and family members wanting to get that perfect picture, I was impressed at the amazing support being poured out for these kids.  There were buddies everywhere!  Typical kids and teens and adults to help everyone work on their skills and play the game.  I was stunned when I was shooed off the field to go “sit, relax, and watch the game!”  That may have been the best treat of it all!  I got to observe!!!  I got to actually sit and watch Ben have the experience!  There was someone else there to do hand over hand guidance.  There were plenty of people to redirect him when the perfect shine of the sun caught his attention.  And there here hundreds of pair of eyes watching and cheering him on as he stepped up to the plate for the very first time!

Photo Apr 26, 3 46 09 PM

The ball and bat may have been plastic.  But when he connected that bat to the ball on the stand with minimal assistance, you could see a connection happening within him.  He was happy.  He was proud.  He was doing something that millions of other children, typical or not, have been doing since the invention of the game.  The pure joy on his face when he was told to run.. I wish I could just bottle it!  I was even more amazed when he got to first base and actually STOPPED!

On his second round of the bases he got waved home.  My sweet boy, who couldn’t tell you how to play baseball, who can barely catch and throw could understand the importance of what he was about to do.  He was going to run home.  He was going to score for his team.  His excitement was so huge he couldn’t keep his feet on the ground!  He practically flew home.

Photo Apr 26, 4 11 45 PMIt is not often that I get too see Ben excited to this level.  Joy and happiness erupting from every inch of him.  I have not been able to wipe away the feeling of thanksgiving and pride.  My boy… the baseball player!

Photo Apr 26, 3 47 37 PM

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…

The Time Has Come

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     I am just days away from my race, but I am many dollars away from my goal!  Please, please, help me to reach the $1300 goal for the students of Variety Child Learning Center.  This school has truly changed the course of my sons life!

How You Can Help!

It is very easy to help me reach this goal!  There are three ways to donate:

     1.   Donate online In section 4 write in “Variety of Miles”
     2.   Please make Checks out to Variety Child Learning Center and write “Variety of Miles” in the memo field.  Checks can be mailed to:

Variety Child Learning Center
Attn: Development
47 Humphrey Drive
Syosset, NY  11791
 
     3.    Give checks made out to Variety Child Learning Center to me when you see me. ( But please let me know you have one for me!!)
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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!


No Crying in Baseball

     Thankfully Ben doesn’t play baseball.  He does however, play t-ball and as far as I know, there are no rules against crying in t-ball!

     Over the last 6 weeks Ben has been participating in a local t-ball program for children with Autism.  Team Heroes has been such a blessing to our family and we are so lucky to have been directed to them.

     At the beginning of the program, every aspect of the program was a challenge; warm up exercises, throwing, catching.  The only thing Ben really seemed to enjoy was the running!  (And usually he was running away from me!)  Most days left me feeling frustrated and exhausted as I just wanted Ben to learn something to show some sort of improvement.  Week after week the green fields and t-ball bats became synonymous with crying and meltdowns. I became very good at unfolding Ben’s clenched fists and hand over hand throwing wiffle balls and tennis balls.  The biggest challenge was the bases.  Beautiful white bases in a luscious field of green!  What child wouldn’t want to run right up to them and jump on them?  My child!  There was something about the base being different than the grass that unsettled Ben.  He would not step on the bases.  Even if he saw all of the other children, coaches, and parents standing on them, he just couldn’t break the spell that the grass had over him.  Ben would begrudgingly (slowly) go from base to base with much coaxing from me.  (Please read that as: Mom dragging child from base to base.)  Ben would stand next to the base.  He would stand on either side of the base.  He would walk around the base.  He would not step ON the base! 

     Fast forward through multiple weeks of the same frustrating experiences, wondering if I would ever see him pick up these skills.  (Warning: here come the tears)

     This past weekend when we got to the field, he was so excited to run down the hill and not miss his warm ups.  And then he surprised us all!  Ben picked up the ball and threw it, multiple times, without assistance! He got it!  His aim wasn’t great, but he was trying.  I was so surprised!  After a water break it was time to go to hitting and running the bases.  Ben wouldn’t let me help him bat, so I stepped away, preparing myself to watch him take multiple wild swings. 

I couldn’t believe my eyes when the bat and the ball connected!  To my amazing disbelief, he dropped the bat and took off… towards first base!!!  I thought that I was going to need the smelling salts when he stopped at first base without prompting and I noticed that he not only stopped AT first base but.. ON first base!

     Base after base, he ran and stopped.  He watched the other children at bat, waiting for when it was time to move.  He didn’t need for me to drag him along, in fact he didn’t even want me standing near him.
 
     My Ben had figured it out, after 6 weeks of struggle.  He knew what he was supposed to do and did it perfectly.  He had learned and didn’t need me anymore and in that moment I was so thankful for my sunglasses, but I think the tear spatters on my shirt gave me away!

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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