From Screening to Diagnosis

The developmental screening confirmed what we already knew but did not want to believe.  Not only was he delayed, but significantly delayed in all developmental areas except the area responding to physical/motor skills.  From the time I made the appointment to the time of his screening, we had already lost 2 and a half months.  He was screened in October of 2009 and he did not begin receiving services until February 2010.  We lost a total 6 months of services by the screening process alone. I advise all parents to get their child screened as early as possible.  Make your appointment while your child is months old and as soon as you suspect any delays.  Know the signs – learn what to look out for here.  Don't wait and think that your child will catch up. 

Once eligible, the program provides therapy services to the child at no cost to the parent either in your home or in an educational setting.  We chose the educational setting.  While enrolled in an early intervention educational program, your child receives both occupational and speech therapy. 

Reagan was a very happy child.  He transitioned very easily into the school environment.  Certain questionable practices at his first school placement led Dad and I to request a transfer for the next school year. Because he wasn't three when the next school year began, he was able to benefit from another year of the early intervention program.  The next placement was a huge improvement.  His teacher was a wonderful person.  They taught Reagan to eat with a spoon all by himself using a special, adaptive spoon and bowl introduced by the occupational therapist. They taught him to stay seated during activities by sitting on a gel pillow. This was no easy feat. (He still doesn't stay seated for longer than a few minutes while at home or outside the school environment). 

But still, he wasn't like the other children in his classroom.  He was far more hyperactive than his peers.  He flapped his arms when he was excited.  He showed very little interest in playing with his peers or participating in group activities. He was always content playing with toys all by himself.  He also loved lining up his trains. He was always taking off his shirt. He would even play pranks on his teacher by throwing the shirt over the fence when she wasn't looking. He would get so excited when she finally noticed and would watch her retrieve the shirt. At home he jumped.  He jumped all day long on the bed - my bed.  As a toddler he jumped in his play yard so often he went through three different ones.  His need for air and all these other symptoms were all signs that I needed to get him evaluated for the unthinkable - Autism Spectrum Disorder.  Strangely no one told me to get this done.  I had to ask.  How do I get him diagnosed? Where should I take him? Had I not asked, he would have gone undiagnosed for at least another year.

I took him to a Neurologist at the Miami Children's Hospital.  Right away he was diagnosed with PDD and given a prescription for ABA Therapy and the LEAP educational program.  The LEAP program, what is that?  How am I suppose to get him into that?  There are now early intervention programs specifically designed for ASD children 0-3 years old. Reagan probably would have benefited from such a program.  The option was not on the table at the time.  But I did eventually find out what the LEAP program is.  It is the self-contained ASD Pre-K ESE half day program offered to students between the ages 3 and 5 who need a less structured environment.  Reagan needed a highly structured educational environment and as a result transitioned into a classroom that followed the TEACH model. 

As for the ABA Therapy, it took me over a year to finally access these services. Each time I called my insurance provider, I would get nowhere.  I would search via the online provider directory and not find any available behavioral therapists.  I would call each speech therapist listed in the directory only to be told that they did not provide speech therapy to children or Autistic children.  One speech therapy provider had advertised ABA therapy services on their website.  When I called, they said they no longer provided such services. I didn't know what to do.  The school therapists did not know what I needed to do either.  His teachers didn't even know what I needed to do.  So I didn't do anything for about a year with regards to accessing ABA Therapy services.  Had the early intervention services provided access to ABA Therapy services, I would have avoided this gap in service.