Testimonial: "We are so proud of our son and of all his accomplishments."

 

by Candice & Donald Smith

August 25, 1998
 

We are enthusiastic, positive and incredibly proud to write this testimonial about our son Matthew. And yet we have also seen a very dark and desperate time. Let us begin to tell you about our story.

Matthew was born in August 1993 with a few minor problems at birth. His Apgar results were 9 and then 10. He was considered a healthy and happy baby at 9 lbs.15 ounces. During his first year he accomplished each milestone right on time. It was at the age of 18 months that I noticed a change in Matthew. He said nothing and in fact, didn't seem to understand language at all. The simplest of instructions he could not follow. He had little eye contact and would only look at you for a second or two. The biggest factor was his consistent, unexplainable tantrums. He would collapse to the floor with his arms and legs flying about, all the while he would be screaming and crying loudly. These tantrums lasted 15-20 minutes at a time, 6 to 7 times a day.

At that time he was due for his 18 month checkup and we voiced these concerns with our pediatrician. Her suggestion was to wait until he was two years old. At the age of two things just worsened. We were given a referral to a pediatric neurologist with an appointment two months later.

November 28, 1995, is a day we will never forget. Matthew was assessed by a neurologist during a 15-minute interview. Matthew cried continuously, played with the blinds and flicked the lights on and off two or three times. A physical exam of 2 minutes was performed and then we were given the preliminary diagnosis. In this neurologist's opinion Matthew had "autistic like behaviors". What! My son is autistic I thought. Time stood still. My heart was pounding and my mind was reeling. I didn't even have a few moments to pull myself together when he continued in his business like manner to hand me a piece of paper, all ready prepared with a list of tests Matthew needed. CAT scans, EEG, hearing tests, blood tests, etc. The standard tests of ruling out anything medical. He did not give us a moment of sympathy, concern or a glimmer of hope. My walls felt like they were coming down. We drove home both in a daze. I sobbed continually. How could this happen? What had we done wrong? Why was this happening to our precious child? I felt like it was over and we had no where to turn.

The tests came back normal with no further explanations. We were told to contact the psychology department for an appointment.

We were desperate. Matthew's condition worsened. At 2 years 4 months he said and understood nothing. His tantrums increased. I often wondered at that time what my neighbors must have thought was going on. We felt alone.

My call to Dr. Zelazo changed our lives forever. His secretary was the first compassionate, sympathetic person I spoke with. I knew from this first call that these people cared and there was hope.

Matthew was tested in January-February 1996 with standard testing procedures and in Dr. Zelazo's lab with IPP testing. Since Matthew lacked language and due to his non-compliant behavior he would not sit for 15 seconds straight to complete the standard testing procedures. The Information Processing Procedures (IPP) was his only hope. Even with these procedures the testing was very difficult. He was noncompliant, resistant and in fact to the point I was concerned that the testing could not be done. But the testing was done in three sessions. From this we were given the first ray of light - Matthew was an intact processor. What a huge relief our child was not mentally retarded.

At this point we were given an intensive cognitive-behavioral therapy program for Matthew. This program was a drastic change to how we viewed time out. Every time Matthew tantrummed we put him in the corner facing the wall with his hands at his side. The first time it took 45 minutes before we had 15 seconds of silence. The next time it took 30 minutes and so on. At the same time we were introducing a 12-minute therapy session with Matthew each day. At first it was to get him to sit still and comply for 12 minutes. These early therapy sessions were fun using playdough and puzzles. Matthew was rewarded constantly with edibles and often with a warm hug when he showed compliance. Once we accomplished compliant behavior in these sessions, we slowly introduced one-syllable words like ball, cow, etc. The language was first obtained through repetition and then by asking "What's this?" Through repetition and rewards he accomplished each goal. Graduating from a one word spontaneous utterance to two and three word spontaneous utterances. Coincidentally, as his tantrums decreased his language was increasing. These 12-minute teaching sessions taught him self-control and compliance.

From July 1996 through December 1997 Matthew participated in the Toddler Treatment Group, 3 days per week, 2-1/2 hours per day. This group is reserved for the "worst case" children. It gave him the opportunity to participate in one on one intensive therapy. This part of his treatment was crucial to his overall recovery. Once a week, while the children where in the treatment group, the parents got together to discuss the daily trials and tribulations. It also gave us a chance to enjoy those wonderful moments of progress. We took turns doing our 12-minute sessions with our children so that the group, along with Dr. Zelazo, could critique our methods. This parent support group was an equal part of the overall therapy process. First of all it gave us a chance to be with people that knew exactly what we were going through. Nobody knows the frustrations, and fears like these families. We would get the encouragement and strength to face the upcoming week during these meetings. Secondly, it gave us a chance to improve our own skills in our own 12-minute sessions with modifications or new techniques.
I often say that we would have been lost without the support of Dr. Zelazo's team. I am scared to think where Matthew would be today without this wonderful care. I was always guided with a watchful eye and steered towards the right path when things would go off from time to time. The truth is that I owe my son's life to them. I believe that without this program my son's condition would have worsened and he would have eventually been diagnosed as mentally retarded. No amount of words can ever express the gratitude I feel for this group of dedicated and wonderful people.

In any kind of therapy there are times when things seem like they are not proceeding fast enough or the way I would like them to be. However, it has made a hopeless situation into a positive, hopeful experience. It has made us stronger as individuals and as a family unit. My hope is that all parents will get this kind of support. Our children have the right to these methods and therapies. They have the right to go the school at 5 to socialize with other children and enjoy life to the fullest. This was our hope for Matthew and is our hope for every child.

In January 1998 Matthew was integrated in a full time program at Montessori schools. He did exceptionally well and in fact kept up with his peers.

On February 16, 1998, Matthew completed testing procedures at the local children's hospital. In conventional testing Matthew earned a Global Mental Age Score of 58 months at a chronological age of 54 months. More importantly, his rating on the Childhood Autism Rating Scale placed him clearly in the non-autistic range.

Matthew communicates with us and continues to progress rapidly on a day to day basis. He knows his alphabet, numbers, colors, shapes and he even writes his own name. It is important to note that his behavior has changed drastically. There is the odd time he goes for time out to cool down, but the majority of our disciplining is with reasoning. He is excited about starting kindergarten next week and keeps his school bag close to him at all times. He doesn't want to miss the bus!

We are so proud of our son and of all his accomplishments.

B.D.M.
Parent