So, we are still without the necessary services from the county and Zach is running a fever of 103.5 degrees. To those with children, we all know that having a sick child is no fun, a high fever even worse. Add in the complexity of a special needs child who is non-verbal and doesn't understand language - -and all I can say is another layer of heartache. I cannot tell him that he is sick and that it will pass. I cannot tell him that he needs to drink to stay hydrated. I cannot tell him that he should not fight the medicine we are trying to give him and puke it up all over the place, or else out come the suppositories that are only in acetaminophen and don't last nearly as long as ibuprofen. But probably worst of all, he can't tell me if/where it hurts. With this in mind, I have decided that every time Zach gets sick, he will immediately go to the doctor in case of something more serious. There goes some serious amount of time and copays, my friends.
So off Steve took Zach to the dr's so that I could go to work and hammer out a new schedule and deal with several meetings. While at the dr's office with Steve - he yacked all over. Steve was going to ask Dr. N about getting Zach tested for Lyme disease, but amongst the chaos, did not manage to sneak it in. So, we decided, since we think the front office at the pedi's is sometimes hard to navigate, we would send a fax with our request and medical reasoning with attention to Dr. N. Let's see what kind of response we get - Steve is sending it from work as I write this.
In the meantime, I ran into an old neighbor who as part of pleasant coversation, asked about the kids. So I told her. People likely don't want to hear the truth, but I have decided to tell them anyway. Some people probably think I am nuts, but once in awhile I find it worthwhile. And that was the case yesterday. As I explained to her our lack of services (to which she chimed in she was not a fan of Facilitated Communications) I recalled she used to be a school teacher, and furthermore, a school administrator. She was so patient as I told our story, and then she gave me a peice of advice - contact the state department of education and let them know. I realized she was used to dealing with school age or preschool kids, and this would make sense for that. But Zach was only two - and this isn't in the school district's jurisdiction yet. But, nonetheless, her point was a good one; someone at the state level was overseeing this, and they should be notified of our situation - so I skipped my 15 minute lunch yesterday and rattled of the following letter to the New York State Department of Health Early Intervention Program email listed on their website. Make no mistake about this folks, even though I blog, I do no consider myself a good writer - I know I am likely very deficient in grammar and whatnot - afterall, us engineers have never been known for our writing skills. However, all you English teacher types out there - feel free to give me some pointers, as I haved a feeling I will be writing a bunch of these letters in the near future.
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Availability of ABA services in Onondaga County
Our child was diagnosed with an ASD at the end of November while in Early Intervention services. As part of his evaluation a report was drafted which included the diagnosis and recommendations for ABA type services.
After notifying our Service Coordinator of the diagnosis and providing copies of his evaluation report, we requested ABA-type services. We are being told by our Service Coordinator and the Onondaga County Early Intervention Program Coordinator that these services are not available in our area under the Early Intervention program. They have stated that there are professionals in the area who do ABA type therapy, and he will be eligible for those services when he can be admitted into a preschool program this September. (9 months away)
Frankly, we are extremely surprised by this since both the "Clinical Practice Guideline Report of the Guideline Recommendations Autism / Pervasive Developmental Disorders Assessment and Intervention for Young Children (Age 0-3 Years)" sponsored by the New York State Department of Health Early Intervention Program and the "Autistic Spectrum Disorders Children Under Age 5 Onondaga County Resource Guide for Families and Professionals" both specify that:
"Behavioral and educational interventions are currently the predominant approach for treating children and adults with autism."
and
"It is recommended that principles of applied behavior analysis (ABA) and behavior intervention strategies be included as important elements in any intervention program for young children with autism."
More than two months have now passed since my son's diagnosis. Furthermore, it should be noted that he started in the Early Intervention Program in July of 2008, and has shown no progress using DIR/Floortime approaches from his SLP and only recently began OT services - a total of 2 hours of services compared to the 20 hour minimum recommended in the "Clinical Practice Guideline". We are told by the professionals that time is of the essence in getting our son the services he needs (as prescribed by two doctors) - that we need immediate and intense intervention, yet feel an unreasonable amount of time has passed for not getting these services.
This is a very difficult time for any parent, and is exacerbated by feeling that we cannot give him what he needs. If you feel you could be of any assistance to us or to Onondaga County in helping us get the necessary services for our son, we would appreciate any help you could offer.
Sincerely,
Dr. and Mrs. Steven Morphet
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