Nov. 22, 2012

Being Thankful
by Meagan Brannon
This week, Ben had a homework assignment sent home from preschool. It asks his family to help him complete an “I am Thankful for” project to share with the class. My immediate thoughts were frustration and gloom. What am I going to help Ben put on this blank piece of paper besides scribbles? How do I know what he is thankful for? If only he could tell me. I yearn for that knowledge that is locked up inside him. I wonder if he would say something sweet, like being thankful for his mommy and daddy. Or maybe he’d take a typical four year old boy approach and be thankful for his toys or his favorite Backyardigans DVDs. November is a month in which we reflect on what we are most thankful for in our lives. So instead of feeling gloomy because I don’t know what Ben would say, I’ll take my best guess for him. I think Ben would be thankful for his family. He’d be thankful for all the tickle fights and snuggle times with daddy, for all the hugs and kisses from mommy, for all the fun trips that his mamaw takes him on, for all the cousins and friends that he has to play with and hopefully for having two younger siblings that follow him around because they think he’s the coolest big brother in the world. Yes, I think that’s pretty close to what Ben would tell me if he could.  As for me, while one day I hope to be thankful for Ben’s voice, for now I’m thankful for his smile, his contagious laugh and his caring personality.  He brings joy to my life everyday and I’m grateful that I get to be his mom.

Nov. 06, 2012

by Meagan Brannon

When Ben was born,
I never imagined I could love someone that much.

When Ben was born,
I never imagined that he wouldn’t look into my eyes.

When Ben was born,
I never imagined it would be hard to go to public places.

When Ben was born,
I never imagined that he wouldn’t understand my words.

When Ben was born,
I never imagined that I would still be changing his diaper at age four.

When Ben was born,
I never imagined that silence would fill the long car ride home.

When Ben was born,
I never imagined that therapists and doctor visits would be a big part of our lives.

When Ben was born,
I never imagined that life would be so hard.

When Ben was born,
I never imagined that he would teach me more than I could teach him.

When Ben was born,
I never imagined that he would be such a loving big brother.

When Ben was born,
I never imagined that one little boy could touch so many hearts.

When Ben was born,
I never imagined how very lucky we were to have been given such an incredible child.

When Ben was born,
I never imagined how strong he would have to be.

When Ben was born,
I never imagined that I would become a better person… all because he was born.

October 1, 2012

Red Flags
by Meagan Brannon

When Ben was about 9 months old I started noticing little things that didn’t seem quite right:

• He often didn’t look when I called his name.
• He didn’t wave bye.
• He didn’t bable very often or attempt to imitate sounds.
• He cried often, especially around a large group of people.
• He didn’t point.
• He walked late (14 months).
• He didn’t play with toys correctly.
  These along with other behaviors eventually lead us to the google search page where we reluctantly typed, “Symptoms of autism in infants”.  Here are a few red flags to look for and if your child has any of these red flags, please contact your pediatrician and ask to be referred to a developmental pediatrician for an evaluation.  Early intervention is the key to success!
  While a diagnosis of autism is generally not made until a child has reached an age between 2-3 years, signs of an impeding diagnosis can appear as early as within the first year of life in 6 to 12 month old children.

The Top Ten Signs of Autism You Need to Watch for in Your Infant
1.  Does your child rarely smile when approached by caregivers?
2.  Does your child rarely try to imitate sounds and movements others make, such as smiling and laughing, during simple social exchanges?
3.  Is your child delayed in voicing baby babble or babbles infrequently?
4.  Does your child fail to respond to his or her name with increasing consistency from 6-12 months?
5.  Does your child not use gestures when communicating by age 10 months?
6.  Does your child make poor eye contact with you or others?
7.  Does your child seek your attention infrequently?
8.  Does your child repeatedly stiffens arms, hands, legs or displays unusual body movements such as rotating the hands on the wrists, uncommon postures or other repetitive behaviors?
9.  Does your child typically not reach up toward you when you reach down to pick him or her up?
10. Do you see delays in motor development, including delayed rolling over, pushing up and crawling?

September 11, 2012

Most days I remain positive
by Meagan Brannon
Most days I remain positive. I focus on the good things. But there are some mornings I wake up and I feel like I can’t breathe. The panic creeps up on me. When will Ben talk? What if he never does? I can’t imagine living my whole life, not being able to have a conversation with my child. It’s just not fair. We have so much to talk about. There are so many things that I don’t know about him. What’s his favorite color? What scares him the most? What does he want to be when he grows up?
One morning on the way out the door, I said my routine “bye buddy” to Ben. To my surprise, instead of the usual silence that follows, he replied, “bye mama”. I was floored. That little voice was the sweetest sound I’ve ever heard. I cried tears of joy all morning. I kept replaying the words over and over in my head. By that evening, though, I had outplayed it. I could no longer hear the sound of my son’s voice. I had forgotten it. It was the best sound I’ve ever heard and I couldn’t remember it anymore.
Every night before I go to bed, I pray. I thank God for all the blessings he has given me and I ask that he allow Ben to talk, if it’s in his plan. Every morning I wake up hoping that today will be the day. Will I hear his sweet voice say his sister’s name? Will he tell me bye today? Some days we hear a word here or there. But most nights, I lay down for sleep feeling defeated. It didn’t happen today. Another day I lost. Another day of silence has passed. My heart breaks a little more each day.
I still hold on to hope that we will get there. Most days I really believe it. But on the days where I feel doubt creeping up on me, I’m grateful that I have a wonderful support system to remind me of how far we have come. I have people I can call that remind me that my son is smart and strong willed and fully capable of great things. I don’t have to hear words to know my son loves me and that he is happy. I see it in his face. His smile and his laughter are enough. For now, I’ll focus on that.

-August 27, 2012

One day, I’m not even sure when or how it happens, the sadness slowly starts to fade away. Something inside of you shifts. Instead of feeling hopeless, you begin to find hope. You stop watching other people’s children with jealously and envy and begin to watch your own with feelings of pride and joy. The days don’t seem as dark as they once were. My sadness has been replaced with many other emotions. I feel happy again. I enjoy watching Ben play, even if it’s not the same way the other kids do it. I’ve learned to appreciate the things he does well. For instance, my child can spin a coaster on its side with perfect precision. It’s actually quite amazing. He’s also very good at jumping on the trampoline. I used to feel uncomfortable talking about Ben’s accomplishments with others, because most of them are delayed for his age. But now when Ben does something I deem as wonderful, I want to shout it out to the world. No achievement is too small. My son’s disorder allows me to stop and smell the roses. Hearing the sound “ma” probably means more to me, than the mother whose child has said it without reservation since infancy. I have truly learned to appreciate all that Ben can do. I’ve also learned to never give up. We’re still setting our sights high. Bill Cosby said it best when he stated, “In order to succeed, your desire for success should be greater than your fear of failure.”

– Meagan

-August 20, 2012

I wanted to share one of my favorite letters with all of you. It was given to me shortly after Ben was diagnosed. It beautifully describes what it is like to have a child with a disability. I do not know the author but am able to relate to her every word. If you like this letter, please pass it on.

Welcome to Holland
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for awhile and you catch your breath, you look around… and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.

– Meagan

– August 13, 2012

The Devastating News
I think I’ll always remember the dreaded day. D-day (diagnosis day), as I like to call it. It was early March, 2011. We had been traveling over an hour to Cincinnati Children’s hospital numerous times over the last eight months for evaluations and screenings. We knew in our minds that the diagnosis was coming, but our hearts still weren’t ready. We were told to leave Ben at home, so just my husband and I were there to receive the news. I still remember the doctor’s face. When she walked into the room, I looked into her eyes and knew exactly what she was going to say. I know it’s her job, and she’s probably done it hundreds of times, but she looked as if it pained her to tell us. I’m not sure how my husband and I looked, but she seemed concerned before she even broke the news. She asked, “what do you think I’m about to tell you?” My husband was silent, and I replied, “that Ben has autism”. She then flashed us our first ‘pity look’ and nodded her head.

We get ‘pity looks’ almost anytime we go out in public. Ben looks like an average kid, until he makes a strange sound or does a strange gesture. Then people turn their heads, and I can see the wheels spinning. Sometimes I wish I had a sign that read, ‘Yes, he has autism!’ Other times, I think to myself, that I shouldn’t have to explain. I owe no one an explanation. Once a person realizes that something is “off”, we are flashed a ‘pity look’. The look that says to us “Oh, you poor things.” I’m sure I’m guilty of giving this look before to others, but until Ben’s diagnosis, I had no idea how hard it was to be on the receiving end of it. Yes, our lives are hard. No, we are not perfect. But, my child is amazing. He’s dealt with more obstacles in his short four years than many adults have ever had to face. He’s overcome barriers with determination and grace and he has the biggest heart of any toddler that I’ve ever known. He’s kind. His laugh is contagious. He inspires people. I feel sorry for people who don’t know my child. They are the ones that are missing something, not us. We have a healthy, happy little boy who completes our lives. We are the lucky ones. So don’t waste your pity on us. Give it to a child who doesn’t have enough to eat, or to a person who has nowhere to live. We don’t need it. We are blessed beyond measure.

– Meagan

-July 31, 2012
My name is Meagan and I am a parent of a child with autism.  My son, Ben, was diagnosed one month before his 3rd birthday.  Ben is now 4.  He is a typical little boy. He likes to run, climb, play, tickle, chase, jump and be silly.  Autism also causes my little boy to have meltdowns, cover his ears, have trouble with social norms and feel the need to self stimulate when he’s overstimulated.  My son doesn’t know he has autism or even understand what the word means.  He does know that he lives in a world where he is constantly misunderstood.
Ben doesn’t speak, yet.  I say ‘yet’, because I know more than anybody what my child is capable of, and I have no doubt that one day we will have long conversations.  But for right now, Ben only says a few words here and there.  It’s a constant guessing game as to what Ben wants.  For the most part, he can lead you to whatever he needs, the fridge for a drink, the cabinet for a snack, the tv for a movie, etc. But when it comes to abstract needs such as a hug because he’s sad, needing help when he’s sick or reassurance when he’s scared, Ben is unable to communicate any of this to me.  Autism is a constant challenge in our everyday lives.
We have good and bad days just like everyone else, but we learn to celebrate the good days and truely appreciate the small stuff.  A moment of constant eye contact, a sound of a word, an unprompted kiss are all huge deals in our home.  Ben has taught me more about the meaning of life in his four years than I ever learned the twenty four years I lived before him.  I look forward to documenting our journey on this blog.  Any battle worth fighting, is going to be hard.  I’ll share the good, the bad and the ugly in hopes that we may inspire someone to fight.  Fight for more research and more funding for services. Fight for a child who doesn’t have a voice.  Autism will not win this fight, but Ben will… just wait and see.
– Meagan