Weary Warriors

Therapy is an important part of life for a kid on “the spectrum” and their family, as well. Shane receives several different therapies throughout the week. In his day school, he receives intensive Applied Behavioral Analysis (ABA) therapy for 4 hours per day, 5 days per week. Basically, ABA therapy is finding a way of motivating the child and using a number of different strategies and positive reinforcement techniques. In addition to ABA therapy, he has music therapy three times per week and sees an Occupational Therapist once per week. He has made leaps and bounds of progress in social situations and self-soothing techniques. He has made friends in each setting and brings surprises to his partners-in-crime and they give him small trinkets, in return. They’re simple things that mean a lot; a ballerina ornament, plastic egg with rocks, a green toothbrush, rings from gumball machine, plastic frogs, spiders and tiny cars. All of these are tremendous strides since anyone touching Shane’s things would normally have resulted in a kicking, throwing, temper tantrum. In fact, he thought that every kids toys should belong to him “forever and his whole wide life” which resulted in no play dates, ever. We were too afraid of the freak-outs and are still are not comfortable, although we’re almost there. 🙂

At each office, I watch the kids come and go. They have various degrees of needs and characteristics ranging from those who are severely autistic who need any and every service they can get to “normal” kids needing only speech therapy. Some are in wheelchairs and can’t walk, some refuse to get out of the car or get back into the car, throw their backpacks on the ground and refuse to get up, others are running around the waiting room because they can’t sit still, some are making odd noises, some run to their favorite seat before anyone else can sit there. Many carry cell phones, iTouches and iPads, watching the same video over and over for constant entertainment. During the time the kids are in therapy, the parents and caregivers surf the web, knit (I’ve seen a ball of yarn turn into a whole sweater), do paperwork enjoying their every minute of their hour of solace. I see the same ones weekly and wonder how they do it, where do they find the strength to care for someone who demands so much of them every minute of the day…they weary warriors.

Each week, Dave* leads Sam* into the office with a gentle sway and soft words. He has dark circles under his eyes and looks like he could collapse at any moment. Sam is severely autistic and commands every minute of his father’s time. He is non-verbal, walks with a shuffle and doesn’t really communicate in an effective way. He carries an iTouch and watches the same videos repeatedly. Each week, when the therapists come for Sam, taking away his iTouch for less distraction during his session results in a noise that is difficult to describe. Once Sam has left with his therapists, you can see Dave breathe a sigh of relief.

We had never really spoken before, but on this occasion he shared part of his journey with me. At six weeks of age, it was apparent there were problems with Sam. He stared blankly, cried continuously and responded to no ques. At ten, Sam has the developmental capacity of an 18 month old baby, but is the size of a 15 year old boy. Dave met a school administrator somewhere along the way who assured him that they could get Sam into a public school program in Charlotte that offered the specialized services he needs. So, he sold his prospering company in NY and relocated to Charlotte. I sat and listened, taking in all the information I could. When Dave talked about Sam, the love beamed from his eyes. He smiled when he told the story about a barber in town who cuts kids hair when they’re laying on the floor in between playing “Red Light/Green Light.” I could tell that a good sense of humor was part of what was keeping Dave on the sane side of the mountain.

When Dave’s grandmother died, he and Sam went to the funeral. The minute the director of the funeral home saw them walk through the door, he directed them to the “children’s room.” Dave said they didn’t want to go to a separate area and would be joining the rest of the family. As always, Sam had his iTouch in hand. He wouldn’t wear headphones so Dave turned the volume down, but Sam just turned it up. He watched his video and found his favorite scene, rewinding it to the same spot over and over again. So in the midst of tears and sorrow, the guests heard special music playing during the funeral service, the Cowboy Dance Song from Elmo’s World: The Wild, Wild, West. Through the tears and laughter of the guests, Dave knew that his grandmother wouldn’t have wanted her funeral service to be any other way.

Dave’s story is inspirational to me. Each evening when I climb into bed wondering where to find strength for the next day, I think of Dave and others like him. As exhausted and overwhelmed as I feel at the end of the day, I know that my challenge is nothing compared to theirs. They are so weary, yet so strong with such courage, tenacity, love…they are true warriors.

“Perhaps I know best why it is man alone who laughs; he alone suffers so deeply that he had to invent laughter.” –Friedrich Nietzsche

*Not their real names

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3 thoughts on “Weary Warriors

  1. Today in class, we were discussing cystic fibrosis. It was so hard to hold back the tears when we were watching videos about the different symptoms, treatments, and life expectancies. It makes you realize how fragile life is..and how blessed we are everyday!

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