Thursday, December 30, 2010

Family, Developmental Delays, and Doctors - Part 2

Autumn’s first evaluation for Early Intervention services didn’t get us very far.  She was 16 months at the time, and they couldn’t say for sure that she was behind because some kids just take longer to walk.  They suggested we enroll Autumn in a Kindermusik class connected to one of the Early Intervention programs in the area.  They could keep an eye on her, and we could do another evaluation in the fall.

By that fall, they could document a definite delay, and Autumn qualified for Early Intervention services.  I can’t say enough good things about the Early Intervention program we were involved with.  Generally, we drove to their office two days a week to participate in Kindermusik and/or Busy Bees (a structured small group activity time).  Speech, physical therapy (PT), and occupational therapy (OT) were done at our home in Autumn’s natural environment. 

Between doctor visits and therapy, the number of appointments was immense, and Autumn was labeled “Medically Fragile” by the foster care system.  There were over 157 appointments in 2007, 114 in 2008, and 69 in the first half of 2009.  With my experience as a first grade teacher, I knew that the preschool years are the most critical time to help children with delays.  I did all of this knowing that it would not last forever.  However, I wanted to do all I could to help Autumn succeed in life – especially if she were ever to leave our family and return to her birth family.  The good news is that all the hard work paid off.  Though there are still problems, at one of her well visits, Autumn’s pediatrician would later describe her progress as “absolutely miraculous.”

Children age out of Early Intervention when they turn 3.  At that point, they are referred to the public school system.  I have to say that moving form Early Intervention to the school system for services was a real let down.  With Early Intervention, you have a service coordinator, in-home services, and so many options.  The school system is only concerned about delays that will interfere with learning in a classroom environment.  The cognitive domain has always been Autumn’s strongest area.  She qualified for speech and nothing else.  So, I was driving her to the school for speech twice a week while driving to separate places for all of the other therapies she still needed.  One of the great organizations she was involved with during this time was the Lakeshore Foundation.  There she participated in land and water classes that helped develop her coordination and gross motor skills. 

Finally, in the fall of 2009, with the general diagnosis of encephalopathy myopathy and the possibility of a mitochondrial disorder, she qualified to attend the preschool class at the local public school.  We were able to receive most of the services she needed while she was there, the constant running all over the city was finally slowing down a bit.

We started seeing Neuro #2 in April of 2009.  She ruled out a Fatty Acid Oxidation Disorder, and ran several other tests.  She wanted us to see a doctor at Medical Neurogenetics in Atlanta that specializes in diagnosing metabolic and mitochondrial disorders.  However, they do not accept Alabama Medicaid, and this was Autumn’s only insurance since she was still a foster child.  It would have to wait.


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