This letter is intended to give you some background information on our son, Thomas. He was born on April 23rd, 1998. He was 10 ½ weeks premature and weighed only 2 lbs 14.5 oz. He was confined to the Neonatal Intensive Care unit for eight weeks during which time he experienced a level two brain bleed and contracted Necrotizing Enterocolitis or NEC. At times he was fed through a tube in his nose and other times by a “central line” or IV directly into his blood.
Eventually he recovered and gained up to 5 lbs. and was allowed to come home. For almost two years we watched his growth and monitored his progress with bated breath, always remembering that he would be four or five months behind other children his age because of his pre-maturity. When he started saying a few words like ma ma, da da, ba ba around 15 months we were ecstatic.
Then without warning, somewhere between 18 and 24 months he stopped talking. He would not respond to his name and was almost totally indifferent to the presence, or lack thereof, of any other person. We did not understand at the time, we just thought this was result of his being premature. Luckily, Thomas was considered an at-risk child and we were periodically in touch with Carol (no last names), our Early Intervention Service Coordinator. We voiced our concerns to her and she immediately had an Initial Evaluation done and started the Early Intervention process that allowed Thomas to receive Speech, Physical, Occupational and Special Education Therapy, for which we are eternally thankful. Thomas received those services from February of 2000 to June of 2001.
Although Thomas made significant progress during his therapy, which he would not have made without these services, he seemed to be “barley treading water”. To illustrate this point, was given the Battelle Development Inventory Test (BDI) by Roosevelt Children’s Center on 1/31/00. His initial test scores put him behind by 33% in his adaptive skills, 33% personal-social skills, 33% in his communication skills and 25% in his cognitive skills. Thomas was given the same test again on 2/09/01. His test scores at that time put him behind by 53% in his adaptive skills, 35% personal-social skills, and 30% in his cognitive skills. His Speech Therapists also estimated that Thomas still had a 50%+ delay in his communication skills.
Our service coordinator then said the Thomas must have a Psychological Evaluation done before we meet with the CPSE and transfer his services from Early Intervention to the school district. So we made an appointment for Thomas to be evaluated. On 3/20/01 we met with three Doctors from the Kirsch Development Services Center that specialize in Autism who all examined Thomas. After the examination we were told Thomas was Autistic. We were given a ton of information and were told that he should receive the maximum amount of services allowed and that we should consider an ABA program for Thomas. We immediately began increasing his services as providers became available and researching all the information we could find on Autism and its treatment.
It was clear that the Early Intervention Services helped Thomas considerably, without them he would have fell hopelessly behind, but it was also clear that he needed a more intensive program than the one he was getting if he was going to “catch up”, which ultimately, has always been our goal. We felt that he had come as far as he could go with the type and level of services that he was receiving and his providers felt that he was ready to move on to a more intensive program, especially in the area of communication. Language drives the rest of learning and he didn’t have the language skills that he needed to learn and grow to his fullest potential. We and all of his providers felt that Thomas was very capable of learning and that we needed to build quickly on his skills so that he didn’t fall even further behind.
So in June of 2001, we all met at the School District's offices with the Committee on Preschool Special Education (CPSE) to put together an appropriate Individual Education Plan for Thomas. We felt that is was vitally important that Thomas receive whatever services he needed that would allow him every opportunity to become “indistinguishable” from other children and an obedient and productive member of his class
We had faith that Thomas could achieve this goal. We based our faith on our experience with Thomas and the feedback we received from his providers. Without exception, they felt that, with the appropriate therapy and educational program, he could be mainstreamed into the public school system with little or no special services.
Like every parent we only wanted what was best for our child and we did extensive and exhausting research on every teaching method, educational program and treatment option available for autistic children in order to help us determine what would be the most appropriate education program for Thomas. Everywhere we looked we kept hearing ABA. The booklet “Clinical Practice Guideline, Report of the Recommendations, Autism / PDD” sponsored by the New York State Department of Health Early Intervention Program, recommends that the principles of applied behavior analysis (ABA) and behavior intervention strategies be included as an important element of any intervention program for young children with autism. The doctors from Kirsch Development Services Center all recommended a very intense educational program for Thomas. In the words of Dr. Bonnie Kramer, “Ideally, ABA and the DIR approach should be combined.”
We also received similar recommendations from most of Thomas’ service providers indicating that “A more intensive program to support his learning styles.”, “A comprehensive applied behavior analysis program should be considered.”, “Repetition is very important for Thomas' learning.” Thomas’ pediatrician also recommended the ABA and DIR Approach.
According to the Clinical Practice Guideline booklet mentioned before; “It is important to work with an educational team that is not only well qualified in ABA, but also understands and is familiar with interventions for learning disabilities, someone who understands and has experience with recovery from Autism, and use techniques that will carefully target the student’s learning style and help him progress to his maximum potential. It is important to include parents as active participants in the intervention team. It is recommended that parents be trained in behavioral techniques and encouraged to provide additional hours of instruction to the child. Parent training is important to help the family incorporate these techniques into the daily routines of the child and family and to ensure consistency in the intervention approach. It is recommended that training of parents in behavioral methods for interacting with their child be extensive and ongoing and include regular consultation with a qualified professional. It is recommended that any ABA program include as a minimum, approximately 20 hours per week of individualized behavioral intervention using applied behavioral analysis techniques (not including time spent by parents).
Armed with all of these recommendations and our own research on various educational programs we set out to visit several learning centers recommended in our area that offered a variety of services for autistic children. We asked numerous questions about the programs they offer; parental involvement, student-teacher ratios, classroom integration (the mix of special needs children with other children), and success rate with “inclusion" or mainstreaming of autistic children in a regular education school.
We were extremely impressed with the extensive experience and level of competence we encountered at Stepping Stones Learning Center. Stepping Stones has a full time ABA Psychologist on staff and several ABA teams. They also have the most experience in this area with integrating autistic children with other children and mainstreaming autistic children. They combine a center-based program with in-home services and parental training so that the “intervention can take place for almost all of the child's waking hours”. But most importantly, they have a documented and unprecedented success rate with autistic children!
Based on the recommendations published in the Clinical Practice Guideline booklet of NY, the recommendations of Thomas’ service providers, all of the doctors involved in his care, the information we obtained from our extensive research, the excellent success record of Stepping Stones Learning Center and the ABA approach, and our direct observation of several other learning centers, we felt that a program of intense ABA therapy would be the most appropriate educational opportunity for Thomas and that Stepping Stones Learning Center was the only place in our area that had effectively administered such a program. We were so confident that this was the appropriate education program for Thomas that we applied for and were promised a slot for Thomas even before we proposed Stepping Stones to the CPSE.
Why ABA? According to the Autism Society of America, ABA was specifically designed to achieve inclusive kindergarten readiness and is essentially 1:1 instruction utilizing repetition of learned responses until firmly imbedded. ABA tends to keep a child engaged for increasing periods of time and is effective in eliciting verbal production in some children, especially those in the mild-to-moderate autistic range.
It has been proven in clinical studies that 47% of autistic children fully recovered (achieved lasting normal functioning) using a full-time behavioral intervention program or ABA, and that 90% of the children in the study made very significant progress. By comparison, less than one-tenth of those in a part-time program make similar progress and no other study shows any other intervention to be as effective at helping a child realize his maximum potential development.
With all of this information the kind and caring members of the CPSE agreed with us and put their support behind our requests. Thomas attended Stepping Stones Learning Center from July of 2000 through August of 2002 where he made significant progress, enough in fact to be able to attend Kindergarten in a general education setting with ABA and related services and a 1-1 aid for support.
Thomas has made incredible progress. In Kindergarten he was able to read at a second grade level by the end of the school year and even had a leading role in a school play. Thomas is now in the first grade. He still gets about two hours a week of speech therapy, some ABA services as needed and he still has a 1-1 aid but we (Thomas’ team) are in the process of weaning him away from his aid and laying the groundwork for removing that aid by the end of first grade.
We refused to “give in” to Thomas’ autism and let it consume his future. We felt that Thomas needed to be challenged and we were there, ready to do whatever it took to insure his future independence and happiness. We believe that if we keep pushing him he may well overcome every shred of his disability and become a happy, healthy, productive member of society.
We must be willing to continue to do whatever it takes every day to make sure that nothing come between Thomas and his future. If we grow weary, hesitate in our resolve and fail to give him, and all of our children with autism, all of the tools they need to become a happy, healthy, productive member of society then we as a society will have to pay later, but ultimately the highest price will have to be paid by our children, and that price will have to be paid for the rest of their lives.
Mom & Dad
This site is for the private use of Thomas' family, teachers, therapists and friends as well as anyone
who is interested in Autism, it's treatments or it's effects on the family of and the individuals concerned.