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CK grew up an adorable child, hitting all of his milestones except for one big one: speech and communication. I include communication because just after his 2nd birthday and initial contact with Early Intervention, we taught CK to point. Anyone with knowledge of child development understands that pointing is a 1 year old skill - and a very, very important one.
At 2.3 years of age (6/98), Early Intervention evaluates CK with a Speech and Language Delay. The report reads:
The personal, social and cognitive areas show significant developmental delay. It is difficult to assess during this one testing session if these are valid concerns or whether this documented delay is due to his lack of vocalization and understandable speech. He is not able to demonstrate attending to conversations around him, respond to directions and tasks, socializing with peers, nor imitating manipulative tasks at age level.
6 months later, in January of 2000, Early Intervention evaluates CK with Autism. The excerpt from the report above is from his Speech and Language Delay evaluation, not his Autism Evaluation. The 6 month delay in an autism educational diagnosis should not have happened with the wording of the original evaluation above. Any professional or parent of a child with autism would have immediately requested further evaluation for autism with this report. When dealing with young children, many studies show that the earlier a diagnosis can be gained, the quicker a program can be put in place, thus the child stands a better chance at a normal life. We lost 6 months.
At 3 1/2 years of age, I ask Early Intervention about toilet training. "Oh, you just teach him the same as a typical child, here are some photo-copies of training pamphlets" said the Speech Pathologist, who was assigned to us for consulting. One year later, I find that Early Intervention possessed the book I used to help toilet train my son. CK was not ready for toilet training by traditional methods but was successfully trained by myself and our hired therapist over the summer anyway.
By August of 1999, we hired an Applied Behavioral Analysis (ABA) consultant from Portland, OR. Currently, the travel costs for the consultant to drive to our town out-cost the actual fees for services rendered. This is because ABA resources are scarce in Oregon and non-existant in, or near, Corvallis.
Our second therapist came on-board in September. With two therapists, a consultant, and proven results of our program, we asked Early Intervention to pay for our program. We were denied. Early Intervention claimed the 4 hours a week of services is enough to gain the skills listed on his goals. Early Intervention denied requests to teach labels (standard nouns) and finally agreed to teach language skills that involve features and functions of nouns like animals, vehicles, furniture, etc. They claim it is not their job to teach nouns.
Before he reached 4 in January of 2000, CK's IFSP team decided the self-contained autism classroom was no longer appropriate. His social and language gains, along with the fact he is by far the highest functioning child, made the placement at a self-contained classroom inappropriate. We persuaded Early Intervention into placing him at Kindercare, a corporately run pre-school. Our argument was based on the fact that CK has been attending Kindercare since before age 2 in a full and part-time situation and functioning well with his typical peers.
CK had been assigned 7 different Early Intervention Instructional Aides between January and December 2000. This inconsistency, topped with aides that have little to absolutely no training in autism, special needs, nor behavioral issues caused CK to regress in his behaviors and social skills. Early Intervention contended this was the fault of the Kindercare teacher. The Kindercare teacher was bewildered with a lack of understanding as to her teaching responsibilities. Early Intervention took 6 months to meet with the Kindercare teacher and show her the teaching goals, per law. This was too little too late. CK was switched to a different classroom for the summer.
By summer of 2000, CK's Early Intervention Case Manager/Cognitive Area teacher and Occupational Therapist resigned from Early Intervention. The 20+ year experienced, award-winning Occupational Therapist resigned based on the poor administration of Early Intervention resources and lack of the ability to serve her clients appropriately due to caseload size. CK's Pivotal ResponseTraining aide (a technique to teach social skills and language) was reassigned away from CK. Three quarters of his one-to-one therapy were lost in one fell swoop with 3 new replacements. By December 2000, CK's IFSP was still not being followed with direct instruction of 4 hours per week. Aide number 6 is given the daunting task of carrying out 1/2 of the IFSP. This is after being told numerous times that aides do not receive enough training to take data, let alone carry out goals.
Our monthly out-of-pocket costs for teaching CK averaged $1200 a month during the summer of 1999, to $1000 a month during the school year, to $1800 a month during the summer of 2000. Starting in 2001, we had consultant costs every other month of about $500. These are labor costs and do not include, books, teaching tools, and seminars. As one can see, this is not an inexpensive program. What do we gain in all these expenses, frustrations, and huge efforts of coordination A better chance that our child has to lead a normal life. What does society gain from our money, frustrations, and huge efforts The chance to save 2 million dollars over CK's lifetime for support and services by way of mental health, group homes, or even prison.
As parents of a child with autism, we are literally screaming for resources: Professionals with certifications in ABA, trained therapists, books, videos, etc. I have noticed each parent in my community start from scratch by having to learn about autism and get additional out-of-pocket services by themselves. Parents often can't help each other as we are too busy helping our children and fighting Early Intervention or the School District. These are hard working, intelligent, tax paying parents that love their children and want to help them in any which way possible. Society is getting a great bargain by having such motivated parents that want the best for their child in order to have the best outcome. Now society needs to give back by funding these parents...the money saved in the long run will far outweigh short term costs involved.