First I will tell you my story…
My first contact with autism was when I was a teenager. I helped with a summer camp for children with special needs. I was in my first year of Occupational Therapy school when I had heard about the program and decided to jump on board. The program had a mixture of children with disabilities and was there to provide care during the summer when the children were not in school. I loved it! As I was closing in on finishing my OT program I had to clinicals and one of them included an eight week rotation with children from the ages of 3-5 years old. I was NOT excited about this. The children I had dealt with during the summer camp were 11-21 years of age. However, my instructor at the time was not going to change it so I dug in and did what I had to do to finish my program. Then one day……I met Noah. A brown haired, brown eyed, non-verbal three year old that had been diagnosed with autism at 18 months old. I completely fell in love with that kid. As luck would have it, the preschool was starting a classroom for autistic children the following year and they needed an OT. I would have done whatever I had to do to work with Noah. I began working with him in his home program doing Applied Behavioral Analysis (ABA) training. The following fall I started at the school and continued to do his program along with several others. I was dealing autistic children 7 days a week and loved every minute of it! I miss it to this day.
The following story is as written by Jeannie C. about her son Lito.
A Day in the Life of a Child with Autism
“Good morning Ma good morning Daa” he says as he lumbers down the hallway wearing his ‘always smile’ across his face. “Ice cold grape juice” he says without looking up, just like he does every morning. “HUG” he demands as he crawls his 95 pound frame into his Dad’s lap spilling coffee as he goes. Dad knows who gives the best, the sweetest, the longest hugs ever, its this little kid! Spilled coffee doesn’t even make the list of things that matter.
For 11 year old Lito, one of autism’s most difficult challenges is being painfully shy, bashful to the point of immobility, unable to look at or even towards someone new to him. His flag is his most important object when we go out in public. Flip, flip, flip it’s in constant motion, a help in dealing with the ongoing anxiety of being away from home (meaning being around other people). The flag is also a soothing helper because anytime someone new is close by he can drape it gently and quickly over his head covering his eyes to avoid the pain of seeing and being seen. His flag is also a funny and useful tool in expression. “Lito”, I say “do not roll down the window, its raining out.” Glancing at me out of the corner of his eye he gives his flag a sharp snap in my direction. Isn’t that called back talking?
Without his flag in his hand forever flipping, there are times when Lito can get stuck in high gear, hands flapping, chortling, yodeling and grimacing. Well what do ya do with that? Fortunately it almost always happens only at home. No pills for us thank you, so our remedy is unique to our family. Sitting in the living room (a LARGE PART of the living room!) is a swing. A large, sturdy, outdoor type chair swing! When the flapping and chortling start its time for a swing and Lito loves nothing better. Hands spinning, voice volume on loud, back and forth – back and forth- back and forth- ever so surely his hands relax and his smile returns. Never longer than 15 minutes and his hands are resting quietly in his lap, “Ma’s boy” he says with a quiet smile
Bedtime. It used to be so many long sleep-interrupted nights. Getting to sleep was easy enough, staying asleep for Lito was a very different story. Both Lito and I would wake up almost every day tired, very very tired. But knowing we have to always be learning and with help from friends who care and know us best, that changed. Now, we rub just a few drops of essential oil on Lito’s neck, tummy and toes at bedtime and now, almost always he is a great sleeper. We are both so thankful.
“Starfall Cat, Abby, Freya, Chloe, Snowbell” through the room goes Lito saying over and over the names of all the pets he has known. Then, “Belle’s stomach hurts” he repeats again and again through the day (his bout with the stomach flu this winter made a lasting impact on him and surely on one of his favorite movie characters!)
We would not change all these different ways of acting, different ways of thinking and different way of seeing for anything in the world because they all add up to a different way of loving that is our gift each day from a little boy name Lito.
While autism can sometimes be hard to dealwith, what you get in return when working with them is unmeasureable. Even on the really hard days when I got home my heart was full!