One of the biggest challenges when dealing with an autistic child who is nonverbal is figuring out what he/she wants. As a child, my son yelled, gestured, pulled me into the kitchen, pointed at a cupboard and watched as I pulled everything out, yet I often did not get what he wanted. This daily occurrence was emotionally draining for both of us.
Today parents need to learn about every technique available that might improve a child's chances to interact with others, to ask for what he/she wants and to express emotions. Twenty years ago, we experimented with PECS, AKA picture exchange, a system of communication that enables the child to hand a picture of the desired object to his parent or teacher with the hope of receiving said object. Today, APPS designed specifically for communication make PECS nearly obsolete. Apple is far ahead of the game, and if the parent finds the I-Pad to be too expensive, there are many financial grants available.
While Greg was in high school, we tried sign language, but often Greg could not retrieve the word from his brain which would enable him to sign the word for us. More frustration. Today, there are computer programs which teach sign language. What an amazing innovation. When facilitated communication was discovered, we jumped on board, but Greg just stared at us, dutifully typing what we hoped he was trying to say, again unable to make a choice on what he really needed to say.
We all became artists in our family. I took classes, Jay became an expert copier of anything needed to engage Greg and Greg began to draw at age 4. We used art to greatly strengthen Greg's receptive language. However the production of expressive language was slow. Unfortunately, until Greg had art therapy, we were unable to guess what he was showing us. The therapist helped us discover that Kermit's huge ears indicated how noise probably bothered Greg. A picture of Bert giving Ernie a haircut showed us that Greg understood the concept, but he still refused to have a barber cut his hair. We remained patient on that one, snipping away on small sections of Greg's hair while he was taking a bath so the hairs wouldn't bother him. Eventually, he allowed us to take him for his first haircut, at age 16. Life imitated art successfully in that case.
For a child who is totally nonverbal, the parent has these options and others that I am probably not even aware of since we have moved into a new chapter of Greg's life. Educators and parents must determine which is best for each child and move forward, only stopping to evaluate and recommit to some kind of communication therapy or a combination of many.
Most of Greg's teachers along the way encouraged us to continue speech therapy. An occasional naysayer said he would never improve. Greg had a few words and was able to speak in times of extreme frustration; other times, he shut down and just screamed. How agonizing for someone who knows what he wants to say and not be able to get it out. I enliken it to someone who has had a stroke or car accident and whose faculties are all in place but who cannot communicate due to damage to that ability. Greg's teachers were right. Speech therapy needs to happen no matter the age of the child. Greg is speaking more than ever now, and although it is mostly functional and brief, it is speech that helps make his life easier. I am convinced that a combination of all of the previously mentioned therapies along with one-on-one intensive language instruction resulted in Greg's increased ability to produce language.
We have absolutely no regrets about trying every method to improve Greg's speech. Everything combined to create the young adult which Greg has become. He still cannot carry on a conversation, yet he communicates. Sometimes he uses speech; other times, written language on a white board at work. Sometimes he points; other times he draws a picture. Each child must be looked at individually because not all techniques are good for all children. Moreover It must be remembered that there is no single solution.
Now that Greg is 28, having successfully transitioned to a semi-independent living situation, he has been forced to show everyone who is new to his care what he wants. Our children grow up and they become adults with adult needs, but hopefully, a corresponding desire for independence sets in as well and they are able to survive.
Parents: Be patient, keep a steady course of therapy going and hope. That is the paradox. PATIENCE and HOPE are in short supply while raising a special child. Looking forward to the future is also difficult. We live in the moment, trying to cope with the daily challenges, and we cannot envision a future in which communication improves, a future in which we are able to figure out our child's wishes.
Nevertheless there is hope for a productive and happy future. Remember these words: Never stop teaching your child. Pick a therapy and do it religiously, even if it looks like it isn't working in the present. The results are stored in our children's brains to draw from when they are older. It might not happen for many years, but one day, they remember something they learned while growing up and might draw from it to communicate; to survive, even.
No one is the perfect communicator. People without verbal communication deficits often do not ask for that needed hug, those warm words, or that positive reinforcement, and we have to guess what they need. The ability to communicate is the greatest gift we have. We just need to find the ways that work for everyone, especially for our special children. A simple task? Not at all. But a worthy challenge.
With Alice, Greg first learned the vocabulary of each activity Alice introduced. Then she pushed him to ask for what he wanted.
We turned every outing into a language therapy session. "What are you doing?" I asked. "Cherries," Greg answered. We then added verbs and tried for two word combinations. "Picking cherries."
If Greg was highly engaged in a task, he was more open to language acquisition.