Saturday, December 17, 2011

Autism Parents Version of The Night before Christmas

Twas the night before an IEP meeting, when all through the house, every creature was stirring and running about. The assessments were filed in a notebook with care, in the hope that we’d get a one on one aide.
My son was having another tantrum in his bed, while visions of ABA therapy danced in my head; And I knew that I was out of my element since I’d never been taught any behavior strategies. When up in the attic arose such a clatter, I sprang from the room to see what was the matter.
Away to the attic I flew like a flash, tore up the ladder and then fell with a crash. I picked myself up, just as the light from above gave luster to my wife holding her stash. And what to my wandering eyes did she have but the behavior analysis thought lost long ago.
With this new data in hand I ran like a flash, scanned the info and sent out an email blast. The email was sent to the IEP team to consider the findings and help manage my son’s needs. My hands were both trembling and flailing about as thoughts of receiving help were brandied about.
Then came a knock at the door from below and I knew in a moment it must by Steve Nick. The advocate we hired had arrived at the door and more rapid than eagles he started pacing the floor. He discussed all our options, and then he whistled and shouted and called out their names.
Now OT, Now PT, Now Speech and Behavior Plan, On Counseling! On Parent Training! On Assistive Technology and Recreation Therapy! To the front of the classroom! To the use of an Aide! Oh there are still more options to be heard.
As we finished discussing his needs, we moved on to possible goal ideas. Then a wink of his eye and a twist of his head, soon gave me to know I had nothing to dread. He then spoke not a word, but went straight to his work and filled up a graph plotting the bell curve. As soon as he finished he turned with a jerk, and laying a finger aside of his nose, and giving a nod he screamed EUREKA and rose.
He sprang to his feet and showed us the data which proved our concerns were more than valid. When everyone was happy and thought we had a good strategy Steve Nick left our house with a bound. As he sprang to his car he gave me a whistle. As he drove out of sight I heard him exclaim a Free Appropriate Public Education for all, and to all a goodnight.
Author Unknown

Thursday, December 15, 2011

Intuition at Birth

On October 22, 1993, after 8 hours of labor and a difficult pregnancy, my son was finally born. My husband and I did not know in advance whether our child was a boy or a girl, so we had names picked out for each. Caleb Hugh for a boy and Rebecca Norma for a girl.

After delivery of our baby boy Caleb, he was whisked away for the traditional weighing, examining, and wrapping in blankets. My husband then proceeded to go to the payphones to call family to share our good news.  He joined me shortly after, and the nurse brought Caleb into the room, followed by our pediatrician. He had a concerned look on his face. We became concerned when the words out of his mouth began with "I have something to tell you about your son..." We could not help but imagining the worst, every parents nightmare when a child is born.

The doctor went on, to explain to us, that Caleb was born with two toes webbed on each foot, two fingers partially webbed together on one hand, and two fingers completely connected on the other hand. "He will need surgery to correct it, but it shouldn't be complicated, and he will be FINE". We were relieved. I was fearing a heart defect and open heart surgery....

I was elated as every mom is when their child finally is here. I picked Caleb up, and held him next to me, in the traditional newborn hold. My husband was sitting on the bed next to me, and we sat there admiring this new life we had brought into the world. We looked closely at his little fingers and toes, especially the ones that were webbed. The bones were fine, it was just skin that needed to be separated. No biggie.

Caleb began to cry. As his mother, my first instinct was to hold him, rock him, talk to him. Assure him that everything was going to be okay. I tried breast feeding him, it made him cry worse. I tried holding and rocking him, he screamed. The nurse helping me in the room, was beside herself as to what to do next. That is when I noticed something significant. He did not want to nurse, or be held. He did not want to be TOUCHED. If I put him in his bed next to mine and NO ONE touched him, the crying stopped. If I picked him up and held him, or tried to feed him, his legs straightened like a board and body stiffened. THAT IS WHEN I KNEW... something was terribly wrong. At that time, I just didn't know what it was.

Needless to say, after two weeks of struggle trying to get him to nurse, we finally went to bottle feeding. Caleb just looked at us as if to say "what took you so long?" Most of his first couple years were a struggle trying to comfort him, getting him to sleep, and trying to keep him from injuring himself. We had to take him out of his crib at 15 months. We would find him stuck between the rails, or laying in the bed, UNDERNEATH the mattress with it laying on top of him. We really thought that sleeping on a mattress on the floor seemed much safer.

Keeping him in bed, being a chronic insomniac, was impossible. My husband and I would finally get him to sleep around 2 am most nights. At the time we did not have a car, and we both had to be at work at 6 am. In order to get to work on time, we had to get up at 4, get two kids ready, packed, dressed, walk 10 blocks to the babysitters house by 5, walk two more blocks and be on the bus at 5:07. This was our daily routine five days a week. We were exhausted. Caleb never slept. We were beside ourselves on what to do. Since his birth, I had this lingering nag inside me, that something wasn't quite right.

When Caleb was 2 and was not speaking a word, we became concerned. I took him to the pediatrician and shared my concerns with him. He listened intently. I had a good relationship with him, and not long before this, my daughter Brianna was diagnosed with a speech issue and was receiving therapy at preschool. Genetics on my side of the family was affected with quite a few speech impairments corrected with therapy. I asked him for a speech evaluation, and he complied.

I brought Caleb to the Rochester Hearing and Speech Center, where they did testing on him. Testing included fine and gross motor skills, adaptation skills (ability to do things for himself), cognitive (mental), and speech. After the testing was over, the professionals called us into a large conference room to share the results with us. I thought this was odd. I was expecting the results sent to the doctor, and he would call me.

My husband and I sat at this table with about ten different professionals around the table. it was rather intimidating. That is when my world started to spin. One professional was in charge, and explained the test results to me. Caleb was severely delayed across the board in all five areas. We asked what this meant. Their response was "this is an indication of Pervasive Developmental Disorder". When questioning exactly what that was, and what could be done about it. The lady responded with the words.."I'm sorry, I am NOT allowed to tell you". In my mind, I am thinking...WHAT? You tell me my child has symptoms of this condition then refuse to tell me? She continued.. "You need to see a developmental pediatrician". We scheduled an appointment at Strong Memorial on this date..(a month away). We left frustrated and confused.

We did not have a computer, so I went to the local library to find anything I could find on Pervasive Developmental Disorder. I found out, in the middle of a public library, that the room of professionals believed my son had autism. I broke down in the library, I was overwhelmed. MY HEART WAS BREAKING.

I shifted gears in the only way I knew. I was going to find out everything I could about autism, especially the form they believed my son had. I read magazine articles, took out every book I could find. It was 1996, so the information superhighway was not as it is today. Information on autism especially was scarce. Every book I read, every magazine article I read was outdated, information inaccurate for the time. I just did not know that at the time. Each thing I read depicted the worse case scenario, severe mental retardation, limited functioning, and basically hopeless. I fell into depression, suffering an emotional agony that few can understand. A feeling of helplessness, and hopelessness. An inability to do anything to help the child you brought into this world.

Several weeks later, the developmental pediatrician, Dr. Susan Hyman confirmed the suspicions of the Hearing and Speech Center. When asked about his life, what it would look like, would he be functional, ect...we were answered with an "I don't know". We left with an answer...but yet no answers. But we did in fact have a plan mapped out by Dr. Hyman. That is when our REAL journey began... OUR LIVES CHANGED FOREVER BY AUTISM...