Thursday, April 28, 2011

Happy Birthday and Happy Ever After

A birthday is a day to celebrate you and the day you were born. It’s ALL for you. The day can be relaxing or packed full of activities. There can be parties and special dinners, cake, ice cream and presents, too. It’s a day to feel special. Your family and friends wish you to be HAPPY. They send cards, they call you on the phone, or nowadays, they text you or even send those wishes through facebook.

Today is your birthday. WOW, nine years old today. So many HAPPY birthday wishes came your way today? Did you hear them? Do you know what they mean? Do you really know how many people wished you Happy Birthday today?

Tomorrow, people will ask me, “Did he have a Happy Birthday?

As I reflect, I could say…

You appeared Happy because you slept in
You appeared Happy because you wore your pajamas all day
You appeared Happy because you got to watch
Sesame Street
all day at Nanny and Papaw’s
You appeared Happy when we sang the Happy Birthday Song to you
You appeared Happy because you got to eat cake and ice cream for dinner.
You appeared Happy while playing with your new toys and watching your new videos.

As your mother, I know you. Although you couldn’t say it with words, you showed it with your actions, with your smile and with your laughter. "Yes," I will say, "he had a Happy Birthday."

Happiness is something I pray for you everyday, not just on your birthday…anything from contentment to intense joy. I want you to feel it, to experience it, and to keep it with you all the days of your life.

Reality is that depression affects many individuals with autism, especially as they get older. With each birthday, I realize that I am not able to protect you as much as I was the year before. You are a year closer to becoming an adult and soon, you will be interacting with society on your own.

The difficulty that you have communicating your thoughts and feelings so others can understand them makes my heart ache. Most people rely on their relationships with others to have happiness. I ask myself, “Will others be able to see what makes you happy? Will they encourage your happiness, or will they steal that happiness away?”

So, as I write this snippet I pray fervently that one more person in the world will become a little more aware of the scope of autism
…. that they will know what is right in their hearts,
…..that they will truly know and respect that EVERYONE has a RIGHT to be HAPPY.
Not just on their birthday, but everyday of their lives.

Sunday, April 24, 2011

Non Verbal Communication 101

The outward excitement that exuded from our 4 year old as we started on our “adventure” to The Great Wolf Lodge was obvious to all around. Anyone could hear it in his voice, see it on his face and watch it in his actions.

Understanding what our other son was thinking and feeling about this adventure was another story. As parents of a nonverbal child with autism we depend on “reading” his non verbal communication in every circumstance. It is vital to quickly pick up on his cues to help him (and everyone else around him) to have the most positive experience ever. Sometimes we are successful with this feat, sometimes we are not.   

As we started out Friday morning, he willingly donned his coat and piled into the car with us. For the hour drive, he sat quietly with his noise cancelling headphones on and his hoodie pulled up over his head. He peered out the window. He seemed content. Occasionally he would look my way when I talked to him and his brother about this secret adventure that we were going on. No inquisition on his face, just a stare.

I wish I knew what he was thinking. Did he know where we were going? Did he figure it out? Was he excited about this? Was he wondering, too…”Are we there yet?”

We stopped to eat lunch and the rest of the family surprised the kids by showing up there. He appeared excited to see them. He greeted them all and even wanted a kiss from grandma. When they were getting ready to leave, he took my glass of iced tea and dumped it over. Although entirely inappropriate, this was his way of getting our attention to try to tell us something. It may have meant he was upset that they were leaving. It may have meant he was he telling us that he was done and he wanted to go, too.  Or it may have meant something entirely different.  We don’t know.  We had no time to analyze.  Honestly, we still have not deciphered its true meaning. There are times when we have to make judgments and assumptions in attempt to divert escalation of the behavior. Leaving was the swiftest and most efficient solution.

When we pulled up in the car to the entrance of The Great Wolf Lodge, he started to make noises. They were happy noises. He even had a smile on his face and clapped his hands. Did he truly know where we were? Did he remember this from last year when we came? Only he knows. If I had to make an assumption based upon his body language, his facial expressions, his gestures and the inflection in his vocalizations, I would say that he was one happy fellow that he was at The Great Wolf Lodge.


One thing we need to watch for is when our child is being overloaded with sensory input. Too much, too fast leads to a meltdown quickly. If one has ever been to The Great Wolf Lodge, you know that it is very loud in the swimming area. For the child with autism, it is sensory overload: the sound of the water splashing, the fans humming, and the echoes of the people shouting. There are bright lights and movement everywhere. We used earplugs and the Ear Buddy to help filter some of the sounds. Surprisingly, he tolerated it very well.

Although we rely heavily on reading HIS nonverbal communication, our son is unable to read nonverbal communication of those around him.  He has difficulty respecting the personal space of others. We often have to remind him “Touch nice” or “Hands to yourself“.  Relaxing in the pools, we noticed our son would slyly scoot away from us. We earnestly followed him to be in arms reach if an intervention was needed. As hard as it was, we could tell by HIS non verbal communication, he was telling us to “back off, guys, let me explore and have some space.” Almost as if telling us “You’re cramping my style.”

He is almost 9 now, you know!

So we did, and you know what? He made us proud!

It was time for diner and we were a little worried that he wouldn’t want to leave. However, he transitioned out of the swimming area, changed clothes and ventured into the car to go to another restaurant for dinner without incident. There were 10 of us, so waiting for a table and for all of the food to get there was a little long. He was so patient. But guess what? When he was done, he was done. How did we know? Well, when he threw the silverware on the floor and hit his dad.  That was the obvious sign. So, out to the car he and I went. Once in the car, he calmed down and we waited for everyone else to come out.

Back at the hotel we ventured to the arcade….OH Thank you arcade for the game where winning the spiky sensory balls were so easy. I won him as many as he could carry and squeeze at once. (BTW, that would be four!). They kept him occupied for many hours up in the hotel room, along with
Sesame Street
on the computer.


The slightest changes in routine cause our son distress and, it can turn a fun time sour in no time at all. Bedtime was approaching, and he was just not tolerating this change in routine. This wasn’t his house. This wasn’t his bed. Not to mention there is a “CAVE” in the room. We could sense his anxiety. He paced back and forth throughout the room. He was pointing to the door and trying desperately to escape. He was in fight or flight mode. With everything we had we tried to console him. He ran to the bathroom and pointed to the tub. He wanted to take a bath to soothe himself. Yes, it was eleven o’clock at night, but if that was what it would take, we would do anything. He took a bath, and got into his pajamas, but he would not go toward the beds. He still wanted to leave the room. I grabbed my cell phone, some pocket change and slipped on my shoes. Out the door we went.

I could hardly keep up with his cadence. He was pulling me down the hallway. He went to the windows and pointed to the waterpark. The lights were out, and no one was in there. I explained that it was closed and everyone was going to sleep and when they woke up, they could come back in the morning. He wasn’t having it. Desperate and panicky he led me to the front door of the hotel. It was pitch black outside and pouring rain. He didn’t care, he wanted to leave. I had to stand my ground and told him we were not leaving. I took him to the gift shop thinking a treat would soothe him, but it didn’t. I tried to hold him, to console him, but I couldn’t. His body was tense. The sounds he was making were heartbreaking.

We sat in the lobby. The clock said 11:40. I knew that this was going to be a long night. To me, it was quiet in the lobby although, you could tell the conversation of two patrons, who were sitting by the fireplace, was bothering him. He fidgeted on the couch. He was restless. I walked with him to a darker hallway. We sat on the couch and I held him tight. His eyes would slowly shut, then open suddenly as the employees passed by in the hallway.

At last, I felt his body go limp and his breaths get deeper. I didn’t dare make a move until I knew for sure he was asleep. As I sat there for about another 30 minutes, my heart cried out for this little boy. I cannot even imagine what he feels like as he goes through life without being able to speak a word. For his entire life, he has been told what to do, when to do it and how to do it. He lives in a world that doesn’t speak his language. He is unable to tell someone when he is happy, worried, afraid or angry. He is constantly relying on the scope and impact of non verbal communication, and mostly on the ability of others to interpret that correctly. If I had to do that on a daily basis, I would be frustrated and anxious, too, my precious one. Just know, momma’s here for you, and I’ll do my best!

Saturday, April 23, 2011

Are we there yet?

Our family was going on an overnight stay at the Great Wolf Lodge. We kept it a secret to minimize the excitement for one child, and the anxiety for the other.

Although, we were able to keep it a secret, we were unsuccessful with keeping the emotions at bay.

The suspense was too much for our four year old.

“An adventure? What kind of adventure?” he would ask over and over again.

And, each and every time, our response was, “We told you, it’s a secret!

Everyday, He would try to get an answer.

One day, he crawled up on my lap and whispered in my ear,” Mom, are we going to Chuck E. Cheeses?”

“No, not Chuck E. Cheeses.”

The next day, “Mom, is it a bouncy place? “No, not a bouncy place” I replied.

“Mom, what about the movie theater”? “No, not the movie theater”.   

“Mom, I know, We are going to the park, right? “No, honey, not the park”.

Finally, the day that he was waiting for came. As we packed the car, he grabbed his dragon stuffed animal and carried it to the car.” “Why are you taking that with you? “I asked.  He responded,” Mom, dragons go on adventures.”

“Oh ?! okay,” I said.

Thank heavens the drive was only an hour ! Because, for that entire hour, we were serenaded with Fa La La La La, La La La La !!!! Really? A Christmas tune in April?  Each time we asked him to please stop singing, he would ask,” Are we there yet? “And each and everytime, when our reply was "no", he would say,”Oh, man this is taking so long.”

Yes, one hour in the car for a 4 year old AND for the parents who keep hearing “Are we there, yet” IS eternity…

When we reached our destination, the excitement he exuded was an understatement. He was so surprised to see that his grandmother, his cousin and his aunts and uncles were there, too.

He ate. He swam. He ate. He went to the arcade. He ate. He conquered the waterslides. He ate. He played…Oh, did I mention that he ate? Yes, this boy can eat!

He was disappointed as “our adventure” came to an end, but we were able to overt the tears by telling him we were going to get something to eat before we drove home. We weren’t even in the car 5 minutes, and he fell fast asleep. As we arrived at Sonics, I called his name gently to wake him up. I tapped his leg to arouse him, but to no avail. “Are you going to wake up and eat your hotdog?” I asked. Those big brown eyes opened. He ate his dinner without a word and then fell back to sleep.

It was a quiet one hour car ride home. No Fa La La La La La’s. No “are we there, yets”. No questions, no statements, no tears. Just silence.

When we arrived at home, he awoke and walked into the house. Still a little tired, he laid on the bottom step and said, “Mom, Dad….it sure is good to be home.”

Thursday, April 21, 2011

Family of Four

We could do this. I just knew we could. It just seemed right.

He was smiling. He was happy. He had a great day at school.

He waited patiently for his dinner at the restaurant. He ate everybite. His belly was full.

Transitions in and out of the car were uneventful.

Yes, this was it. This was going to happen. We were going to the movie theater as a family. ALL four of us!

Tickets were pre-purchased and the long line was avoided (P.S. Thank You Fandango)

He joyfully walked through the doors and down the hallway to the designated theater. He even had a skip in his step as we found 4 seats together. He pulled down the seat and sat down. He donned his noise cancelling headphones, and appeared to enjoy looking around at all of the other movie goers.

FINALLY, the four of us together in one place about to enjoy a movie as a family.

A few minutes passed, and the lights dimmed and the bright screen illuminated. As the action flashed on the screen... I saw it, I knew it...

He was not going to be able to do it. He could not look at the screen. The sights and sounds were just too overwhelming. He pointed to the EXIT and signed "HELP". He got out of his seat and bolted for the doors. I left with him and walked through the cinema hallway, hoping to ease his anxiety. I tried multiple times to get him to go back in, but he simply could not do it.

HIM not being able to do it = US not being able to do it..Autism divided this family again.

1 hour and 36 minutes later, our family reunited.

Family Of Four, But Admit Only 2

Friday, April 8, 2011

So close...but yet so far

My husband and I don’t usually ever have a moment to sit back and observe our child play in public. We have to be active participants in playing with our son. We are the ones that jump with him, that bounce with him, and attempt to play catch with him. We are the ones that pull out all the tricks to engage him….Oh, what we won’t do to make sure this kid has fun.  We yearn for the smiles, the giggles, and the shrieks….all of which affirms his fun! 

Last night we took the boys to Pump It Up taking advantage of “sensory night” for children with autism and their families. This is one of our son’s favorite places to go. Jumping is his thing.  For the most part, he wanted his dad to jump with him and wrestle with him in the bounce house. Of course, I participated, but tonight, I had an amazing opportunity to be an onlooker, observing him play, observing when had he had enough? When did he want more? What activities was he drawn to, and which ones did he stay clear of?

Another boy with autism joined us all in the large bounce house. He had a few words, but they were quiet words and difficult to hear over the loud humming of the blowers and the loud voices of the children.  He was a smiley guy, and we knew he was having fun by the sign of his flapping hands. It appeared he enjoyed sitting in the middle of the inflatable while everyone around him jumped giving him the sensory input he was craving.

That is when I noticed it. It was interesting and peculiar, yet very intriguing. Was I really seeing what I truly in my heart wanted to believe I was seeing? Was he really doing it? Was my son trying to make a friend? My eyes didn’t leave him. I blocked out every sound and sight around me as I watched, and watched some more. 

I noticed my son’s laughter would increase as he would bounce right by this other boy. He would crash into the wall, stop, turn around, locate where the boy was again and then, full speed ahead, bounce right back by that boy as close as he could. This time, the boy reached out his hand as to try to “tag” him. My son shrieked in delight. After many times of this “game”, my son approached the boy very slowly. He came ever so close him, but not enough to touch him. He pointed to him and then looked at me, as if was saying,” Hey, mom, look at my new friend”. At that moment, I quickly prompted him to say” hi”, but he squealed and darted the other way. The boy continued to smile and flap his hands. The boy watched my son out of the corner of his eye. He made a move, but was stopped in his tracks by the voice of his caregiver who sternly stated, ”quiet hands, don’t hit.” The boy restrained himself and then left the bounce house.

My son quickly ran to the netting, scanning the room. Then in an instant, he was out of the bounce house, too. I quickly left to see where he was going. Breaking all the rules, both of them climbed the ladder to the slide and down they went. Neither one paying attention to the unsafe nature of them going down together, they were stunned when they crashed at the bottom of the slide. There was a moment of silence and motionless bodies. But the laughter returned and then they went their separate ways.  

I started off to chase my son, but stopped to listen as the other boy’s caregiver said,” I think he has found a friend. He doesn’t have any friends in his neighborhood because they are so mean to him.”

I couldn’t say a word. I just gave her the empathetic look of “I so understand.” This was a Dagger…a dagger to the heart, bringing me back to reality. My heart longs for the day that my son will have a friend.

But, no, I wasn’t going to let that bring me down, because this was reality too! My son does not have the words to talk or the skills to play productively, but yet tonight, he wanted to engage with another boy in his own way. He was trying to be social. He was engaging (without being prompted ), he had an interest…he wanted a friend.

He demonstrated social skills that were so close, but yet, ...so far.