Communication Interruptus

For the last decade, my heavy heart watched other children move on through their lives hitting their milestones on time while my son Liam struggled behind, knowing he wanted so badly to be in the mix but not quite finding his way. During the first 17 months of his life, he hit those milestones perfectly on time -- smiled, cooed, rolled over, sat up, crawled, pulled up, walked and said "Mamma," "Daddy" and developed a vocabulary of at least 73 other words we recorded. He was on his way.

Then autism hit.

His words and communication skills evaporated, replaced by screaming fits of frustration. He could no longer engage in basic communication skills like pointing to something he wanted. He just screamed until we either figured it out or fell into an exhausted heap on the floor.

Everyone else's world just kept on turning as ours experienced a head-on collision.

In 1998, when he was initially diagnosed, I didn't have internet access. I didn't have a cell phone. I only had an attached car phone with a giant inflexible antenna. Mairin wasn't talking yet. Our lives were spinning out of control. Our whole family had communication interruptus.

One month after Liam was diagnosed, AOL put a disk in our mailbox as they had for over a year. This time, desperate for more information, I decided not to throw it in the trash. I inserted the disk, took apart our phone and plugged the cord into the computer. That weird little squawky noise started as the dial-up modem engaged and POOF! I found a whole new world of people to teach me how to reach him; people who exchanged their sleep time to swap information until the wee hours of the night.

Three months later, Liam said "Up. Up. Up." We have been moving in that direction at his command ever since.

With the right therapy and treatment, Liam slowly began to talk again. One word here. One word there. Technology swirled around us and continued to evolve despite the communication breakdown in our home. In 2000, we got rid of the ridiculous car phone, replacing it with a cell phone the size of a small shoe box with a fancy flip-down mouthpiece.

Liam hooked three words together in a sentence that year.

In 2005, after Katrina hit, I very quickly learned how to jump on the texting bandwagon on my gaudy, girly pink cell phone. With all of the damaged cell phone towers, the signals were overloaded. It would easily take two hours of straight dialing just to get a full signal and chances of keeping it open were pretty slim. So I learned to jam each of those little buttons two or three times just to eek out the word "HELP!" After six weeks, I could text 50 words a minute in my newfound Morse code.

That same year, seven years post-diagnosis, Liam still couldn't say a seven-word sentence without significant prompting and encouragement.

In the last four years, the world's communications methods have exploded with the advent of YouTube, MySpace, Facebook, NING, Twitter, blogging and tiny cell phones to allow you to update and upload on the go. I can research anything on my Blackberry through BING or Google, check-in for my next flight, shoot pictures, capture video and zap one ringtone from my phone to yours. Cell phones have morphed into mini computers that allow me to email, review documents, slide presentations, Excel spreadsheets and record video -- increasing my communication while reducing the world to my fingertips.

Liam is still clawing his way up the Mount Everest of Communication before him determined to get to the peak. Trying to hit each milestone. Step by step.

This summer he asked for a cell phone because his little sister has one. I wondered if he could be responsible and keep up with it. He can! He uses it to call me when he is at his daddy's house to tell me about his day at school or ask me, "Which one of the United States are you in today?"

He quickly learned how to text -- an unbelievably important communication skill in this day and time. A teenage milestone that he has met -- in part.

He uses this new way to manage his life sparingly but most of his texts are clearly thought out. The first text was "Can you text me my girlfriend's number?" I still have that one locked in my phone. "Did you get the printer fixed yet? I have a project on Thursday." Or "I forgot to ask you to get waffles at the store for my breakfast Mom."

We still have a long way to go though. The other day a friend of mine got a text from him that said, "Two heffalumps covered in honey." The end. No explanation for why he sent it. We'll have to keep working on that.

Finally, yesterday, he asked me for a Facebook account and his very own email address.

I was scared for him to enter the world of the Internet with accessibility but he is nearly 14. Surprising me again, he hit a communication milestone right on time. Why NOT take full advantage of that?

We brainstormed on a cool e-mail address name for him. One that did not include Disney characters' names. One he can grow with over the next several years as he matures. We discussed how important it is to remember your passcode and to make it just tricky enough that you can remember it without someone else figuring it out. We talked about Internet Stranger Danger -- something about which we need to have about 80 Million more conversations.

He selected a picture for his profile that he liked. We set all the privacy settings to their strictest settings.

Then I let him fly. And fly he did.

He scrolled through my friends to figure out who he should send friend requests to. The first request he made was to a friend of his who is 13....along with an e-mail message which he typed out completely independently.

The subject line was "13 Year-Old Buddies" and it went just like this:

Dear O:

Bambi was the cutest and the winner deer. Did you like Bambi because he's cute?

Your Friend, Liam

P.S. It's from Walt Disney

I will continue to help him polish conversations in person, text and e-mail so that it is on level with his peers -- clearly -- but he is without a doubt headed in the right direction.

As I started to explain what a Facebook status is, I was stirring crawfish etouffee on the stove making dinner. He was complaining vociferously about it. He hates spicy food. Once he realized his Facebook status was a way to express what was on his mind, he smiled an impish grin. Then he wrote, "I can't believe my Mom eats crawfish. I hate spicy food because it's bad for my tongue."

After dinner, he decided the etouffee wasn't so bad. He jumped back on, independently found my page and typed, "Crawfish tails on rice for dinner is amazing. Only Boiled Crawfish is spicy. We want dessert at Target. Let's go!" which was promptly rewarded with a trip to Target to find something sweet.

This morning, he checked his account to see if anyone responded overnight. He smiled his cute smile, then shouted, "I have seven friends!" Seven loving, wonderful friends who will watch out for him and gently interact with him to teach him this communication tool.

Mount Everest's Communication peak still seems a million miles away sometimes but we are slowly closing the gap. Every day he keeps pulling out that pick axe of his and chipping away on his journey determined to make it up the mountain before him. His climbing party has tethered themselves to him to keep him from falling if he should slip.

The best part is that he is now high enough that he can look back down and see how far he has come.

And for once, he can relax a little, have some fun, talk to those friends and enjoy the view.

Comments

[fullhouse33981]

Sitting here with tears rolling. You never let me lose sight of hope, I just have to rememember to follow closely in your footsteps! Liam, darlin', you are the absolute best! Someday, Austin will be sending his request your way (he already loves YouTube), he found it before I did.

I read it out loud to my hubby, and got so choked up that I barely got out the last few words. His reply, "WOW", he also is a man of few words.

[Shelley Hendrix Reynolds - Huffpost Blogger]

I love you. :) Austin will get there one day. Keep truckin baby!

[AutismClassroom]

Thank you for sharing. That was a great article to read. I will be sharing it with the educators I work with on a daily basis.

Thanks again,
S.B.Linton
Founder, AutismClassroom.com
Author, How to Set Up a Work Area at Home for a Child with Autism and How to sEt Up a Classroom for Students with Autism

[Shelley Hendrix Reynolds - Huffpost Blogger]

THANKS! Just cause you don't see it on the outside doesn't mean it isn't happening on the inside. You can share with them that now that Liam has enough language he tells me ALL THE TIME about things that happened to him when he was little. Tell your teachers and educators that you work with that these kids are in there, they are awesome....and they KNOW what you are saying to them!

[msladydeborah]

Thanks for sharing this story. One of my granddaughter's is autistic. She has made great strides over the past few years. I always appreciate reading stories from others that educate and inspire!

Hopefully people who do not have autistic family members will begin to realize that our children are capable of doing so much more than they might expect. We also need to let people know that progress does happen in their lives.

[jwebs94]

Why do your kids not like me? No friend requests were received....
:)

I did see the comment about target! I almost replied, "Your mom didn't take you YET?" ;)

Way to go Liam. He is amazing!

[Shelley Hendrix Reynolds - Huffpost Blogger]

My kids love you fruitcake. It is nothing but Heart Heart Heart at this house for Miss Jenny, Gavin and Little Baby Liam. Are we still going to call him that when he is 35? And starring on Broadway?

[usna73]

Hi Shelley. I hope that other parents can also maintain the determination and courage to continue to help their children with autism make progress. Never give up.

While my own son, now 17, has missed many opportunities that have been developed since his own battle with autism, my wife and I still move forward. It is our duty and it is driven by love.

I have worked with Monarch Teaching Technologies, affiliated with The Monarch School here in Shaker Heights, Ohio towards the development of software called Visual Language Learning System. Our partners include Boston Children's Hospital along with other national experts.

The product is undergoing continous improvement and may be rolled out to edcuational settings nationwide in 2010.

Any interested party may visit the website for additional information: www.monarchtt.com

Please note that while this is a for-profit corporation, I have NO economic interest in them. In fact, we have been benefactors in the underlying institutions that provide the expertise.

[Kim Stagliano - Huffpost Blogger]

Here's another milestone. My sister sent me a baby doll from the early 1960s. (ebay!) Mia has taken a shine to it. She brought it to bed the other night and said, "Good night, baby." That was a first. She's never shown any interest in motherly pursuits. In fact, that was one of our first clues to her autism. When Gianna was born, Mia ignored her utterly. Progress and treatment and prayers and hard work will always pay off for our children.

[advocate70806]

Thanks Shelley, this story met all of my expectations. I am still waiting for the book.

[lisakm1109]

That it such an inspirational story! How wonderful that your son is meeting his milestones! i can't wait to see how far my son will be in his recovery by 14 :)

[Jessie Geroux]

Awesome awesomeness. I absolutely love hearing Liam stories. How cool of him to hit such a milestone...it makes me wonder if its similar to the talking one....so many moms of "typicals" say "we couldn't wait for them to talk and now they don't shut up"...where us autism moms/dads see that scenario in a completely different light...so wonder if the facebook milestone is similar..others set up limits to keep the kids off facebook...we secretly want them on connecting and befriending. Welcome to facebook Mr Liam...PS you are so correct Bambi IS the cutest

[divarady]

GO LIAM GO!!! I love these posts, Shelley. Liam is my hero!

-Di

[HRoger]

"and POOF! I found a whole new world of people to teach me how to reach him; people who exchanged their sleep time to swap information until the wee hours of the night." That made me cry as it reminded me of the same time period in my autism battle. Good for Liam and your family! Glad he has come so far!

[Kim Stagliano - Huffpost Blogger]

My girls have discovered YouTube. Oh boy... Did you know someone has blown up the Teletubbies? Eh Oh! Good for Liam's progress. See you Sunday at the NVIC conference!

KIM

[BillRodwick]

Shelley,
I look forward to your updates. You folks are indeed closing the gap.
Thanks for sharing.
Bill Rodwick