Colby, my 17-year-old son with autism, and I went to Wal-Mart on Sunday afternoon, looking for valentines for my Aunt Jeanette to send to friends and family. Since she is no longer able to get out and about, I had offered to take on that task for her.

We entered through the garden section of the store and made our way to the stacks of Valentine’s cards. I called Jeanette as we dug through the shelves, but she was less than excited about the remaining selection. Since neither the Disney princess collection nor the 3-D Transformers packet appealed to her, she decided to forego sending cards this year.

Colby and I headed back out through the garden area. Suddenly, he plopped down on a patio furniture display. I try to follow his lead on our “outings” so I pulled up my own chair. As is often the case, we sat in companionable silence for about 15 minutes.

Colby transitions from meditation to movement with lightening speed. He abruptly leapt up, but, instead of exiting, he strode purposefully back into the main part of the store, made a bee-line for a display of sprays of fresh flowers, and scooped up two bouquets wrapped in cellophane.

“For Jeanette,” he said. “Give to Jeanette.”

To understand the impact of these words, you need to know that Colby’s language remains limited despite his years of hard work. His summation of holidays is categorized by one-word responses: “Birthday ... party.” “Christmas … Santa.” “Valentine’s Day … hearts.”

I had no reason to suspect that Colby had noticed the flowers in the store. I certainly had no reason to think he connected the act of giving flowers with Valentine’s Day. And I definitely had no reason to believe that he was remembering my aunt, a woman he sees twice a year at best.

But he did. He noticed and connected and remembered.

So I did, too. Thank you, Colby!

Happy Valentine’s Day!

As a mom of a son with autism, I have become adept at setting goals for Colby. One small problem. I can encourage and facilitate, drill and practice; however, ultimately, I cannot control whether my child meets those goals. This year I am shifting my focus a bit to work on what is within my control - me! So, in 2012, I am going to model my own goals after the ones I so frequently use for him:

· Find a wide variety of reinforcers – for myself! Intellectually, I may comprehend why my son walks away from me, looks past me, doesn’t answer me. My gut still sometimes feels the kick. In moments of flurry and frustration, we frequently resort to our tried-and-true “rewards,” whatever they may be. Red wine and chocolate … diet coke and doughnuts! Just as Colby needs a broad base of reinforcement options, so do I. I need to focus on expanding my choices to include selections that may increase my physical, mental, and emotional well-being – a walk, a song, a cheer, a game.

· Set some measurable goals - for me! I need to take my son’s goal (“He will ask a ‘where’ question correctly 8 out of 10 times”), and give myself a goal I can control (“I will ask and answer 20 ‘where?’ questions every time we go to the grocery store”). Instead of focusing only on Colby’s goals (“He will learn to tie his shoe”), I need to designate my own tasks that support those goals (“I will give Colby 8 opportunities to tie his shoes every day”). That way, I can experience a little success based on my own actions. Chocolate, here I come! Oh, wait … I’m going for a walk! :-)

· Schedule play dates - with other adults! An autism diagnosis drives many of us into isolation. In the face of the challenges that diagnosis brings, we often become disconnected. It is hard to concentrate on “small talk” when we are dealing with a crisis. Just as Colby is working hard to gain skills to develop appropriate social interaction, I need to build and keep my own relationships. I need to stay part of that “real world” I so desperately want my son to join. Friends can keep us moving forward – some by listening to our rants and raves, some by keeping us accountable in the work we need to do, and some who provide perspective from their vantage point outside the world of autism.

Holidays can be especially challenging for these families. Parents may struggle to muster excitement about shopping for a child who will refuse to open the present. They often spend their large family gatherings tucked away in a solitary room with a child who can’t tolerate the crowd. They may mourn the fact that their child won’t be sitting on Santa’s lap … or participating in a school program … or whispering with siblings about what presents await.

So what do you get this family?

For 50¢, you could send a note of encouragement to the parents. Let them know that you care. Mention any progress you have seen – a fleeting smile, better eye contact, more intelligible words.

For $5, you could deliver a fancy cup of coffee to a weary mom. Many children with autism are unable to sleep through the night; consequently, their parents are generally sleep-deprived.

For $50, you could fill up their car with gas. Children with autism often have therapy schedules that require frequent trips all over town. Their families frequently pay for these therapies out-of-pocket.

For $500, you could buy an iPad (a great “go-in” opportunity). This device is worth its weight in gold for children with autism. Tremendous apps are available - flashcards, educational games, entertainment options, even whole communication systems.


Whatever the amount you can spend, your gesture will be appreciated!

Hope Alive at Work

One 19-year-old client of our Hope Alive program, Michael, is a talented artist who has the ability to speak but struggles to sustain a conversation.  We created the opportunity for him to experience a “business meeting” with a local entrepreneur in need of some fabric design work. 

With the help of his “coach,” Michael put together his very first resume, which provided him a script for structuring the conversation.  They assembled a portfolio of his work, examined fabric samples, and engaged in role-play practice every day for weeks.

Michael learned the meaning of “small talk” – weekend activities and weather are permissible topics; recounting episodes of Barney & Friends are not.  He learned the purpose of “contact information.”  He rehearsed reading body language cues to determine when the meeting was coming to a close.  Much to his disappointment, he gained the understanding that  “Do you have any questions?” does not mean “Do you have ANY questions?” 

To maximize potential success, we also armed our entrepreneur friend with a script of her own, full of suggestions about what Michael might expect her to say. 

The meeting was an experience of hope in action.  You could watch Michael’s brain at work as he juggled remembering to smile and make eye contact as well as to speak in full sentences.  You could see the businesswoman strain to speak slowly and clearly and to provide plenty of positive feedback.  What a special time to see connections being made … on a myriad of levels!

In the end, Michael put his own special spin on the interview as he went off-script with his closing remark to our short-haired entrepreneur.  He shook her hand, smiled appropriately, and said enthusiastically,  “I love your boy hair!”

I am a lover of language. Because my education centered on word-based programs - philosophy, English, and law – I have spent spent years focused on selecting just the right word after considering the shades of meaning, the tone conveyed, the legal ramifications. I can share this passion with my older son, Rixon, a college freshman, majoring in mass communications; I cannot with my nearly-16-year-old son, Colby, who has autism and a workable vocabulary of only a few hundred words. Rixon and I can exchange quips and quotations, debate issues and craft stories. Colby and I must work together patiently simply to exchange two complete sentences. Often Colby must resort to spelling out his words to ensure that I understand his speech. And yet, on rare occasion, in his own way, Colby speaks to my deepest core.

Not long ago, I spent several hours behind closed doors in a conference room explaining Project HOPE’s programs to a group of visitors. In trying to describe the scope of our services, I found myself saying, “We really have many, m-a-n-y, mini , m-i-n-i, programs. “ I am accustomed to Colby’s habit of spelling to make sure a word is understood and relied on that device myself to make sure my guests understood that I was using homonyms (at least those two words sound the same in my Southern drawl!). I had never before used that phrasing and it stuck in my mind.

Late that night, Colby and I took our routine walk around the block. He rarely tries to converse during this time, preferring to ride his scooter fifty feet ahead of me. But as we rounded the last corner, he hung back and waited for me. When I caught up to him, he asked, “What does ‘many’ mean? M-A-N-Y?” I answered, without thinking about it, “ ‘many’ means a lot.” His next question stopped me in my tracks. “What does ‘mini’ mean? M-I-N-I?”

Colby was nowhere near the conference room that day. I had never before used that particular phrasing. He had never before asked those questions or used “mini” in any context.

The words themselves hold no deep meaning – just two words strung together. But the message I received was significant to me: that, on some level, way beyond words, Colby is communicating with us. One of Colby’s many, m-a-n-y, mini, m-i-n-i- gifts to me!

Since his diagnosis of autism in June 1996, my son, Colby, has worked nearly 40 hours a week to aquire skills that come naturally to most children.  At the age of 15, he has made tremendous gains, but language remains difficult.  He often strings words together in ways that make sense only to him:  "Dog over white big no hungry on fast."

So much to teach...

Last week, I was quizzing him in "Name that Category" cards.  I held up picture cards with three items on each one.

"Apple, banana, and grapes are ...." I started, and Colby quickly responded, "fruit."

I followed with "Hammer, screwdriver, and saw are ..." and he answered, "tools." 

My next card was "A cloud, rainbow, and sun are ...."  Colby's instant response made me stop my rapid-fire drilling.

"Beautiful," he said.

So much to learn...

Cards printed permission of Super Duper Inc. ©2009

Hope Academy's annual holiday program is over ... and my heart is full.  In a single hour, a multitude of celebrations unfolded.

The opening welcome was handled by four of our alumni, the first group from Hope Academy to be graduating from high school, which includes my older son, Rixon.  Although each of these seniors moved from our program into different high schools, all of them have made their mark - taking honors and AP classes, participating in the arts and sports, holding leadership positions.  After four years, they remain friends, eager to come back to recognize the impact of Hope Academy on their lives.

One of our current 8th graders, a leader with a quiet disposition who had opted to be the stage manager so that he would not have a speaking part, made a surprise request to do our opening prayer. He wrote a heartfelt, eloquent message and prayed it with conviction.

The preschoolers sang with gusto, the children with autism positioned next to friends who stood ready to help. Parents of the children with autism marveled to see them smiling into an audience of nearly 300.  Parents of "typical" students had tears in their eyes as they watched their children befriend their peers who were unsure about what to do.

One of our 3rd graders with autism, who often speaks too softly to be heard, proclaimed his lines into the microphone with poise, waiting for the applause to die down before delivering his next words.

A 1st grader with autism, who started with us this year with the expectation that we might not hear her speak for months, joined her class on stage and spoke clearly into the microphone, breaking into an angelic grin!

A 2nd grader who has struggled with anxiety laid her fears aside and took charge of her friend with autism, handling the microphone for him and guiding him off the stage.

In a beautiful blend of traditions, one 2nd grader wearing his yarmulke explained the significance of the menorah.  His friend, garbed as an angel, discussed the creche.

The 1st graders belted out "Frosty the Snowman," arms linked as they swayed back and forth, a plan they devised on their own to help their classmate with autism who was unable to stand in place.

One student on the autism spectrum was placed in charge of the light system, handling 26 different light changes all by himself.  Another managed four costume changes and brought down the house with his comedic role.  My younger son, Colby, performed the role of a doctor, for the first time in 7 years speaking lines that could be understood by the audience without benefit of written prompts.

Truly a celebration of hope!

With a fabulous Thanksgiving dinner behind me, and a month of December delicacies ahead, my thoughts have turned to my favorite meals this year.  I have dined in several spectacular restaurants this year and tasted some magnificent dishes - pepper-encrusted filet, black bean cakes with salsa, white and black chocolate bread pudding.  I have been treated to scrumptious dinners from friends and family who are excellent chefs.  But of all the food placed before me this year, my favorite was a bowl of red jello. 

Now, I am not a jello kind of gal.  I do not consider jello a dessert for sure - chocolate is not involved.  Nor do I see jello as a substitute for a salad, a fruit, or even a snack.  In my book, jello is really a useless substance.  Don't like the smell; don't like the taste; don't like the texture.

But, in July, a bowl of red jello became my most memorable dining experience of the year.  My older son, Rixon, and I were lounging in the sun, talking about his upcoming senior year - football practice, college applications, vacation plans - and dozing in between.

Suddenly, my younger son, Colby, burst through the back door, bearing two bowls of red jello.  This jello was not molded into cubes or rounded domes.  It was not garnished with dabs of whipped cream.  This jello had obviously been squished through Colby's fingers as it was glopped into the bowls.

And yet, Rixon and I sat up and looked at each other, astounded and ecstatic.  Colby, who has autism, had SERVED US jello.  Colby, in his 15 years, has shared food only a handful of times.  He has spontaneously said "I love you" only two or three times in his life.  His conversation, strained at best, nearly always centers on  "I want ..." 

But, today, amazingly, Colby had formed the thought, "I want to do something for my mother and brother."  On his own, he had searched the fridge, found containers of jello, torn them open, pulled out bowls, maneuvered the jello into bowls, retrieved spoons, and searched us out. 

As he thrust the bowls into our hands, his smile said it all.  For the first time in his life, Colby was performing an act of service, simply out of love.

The best meal ever.