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Twins Update



 
 
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Old July 8th 04, 03:25 PM
Frisbee®
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Default Twins Update

I've been a poster, but mostly lurker here for probably six years (the age
of my boys).

Since I don't post all that often, I don't suspect many of you know me or my
family, but I thought I'd post a bit of an update on my boys, Dustin and
Dylan.

My wife first noted problems with my boys (developmentally) at around age
two. Her first son (from a previous marriage) was up and walking at the age
of nine months. Our boys went from cruising to walking (more or less
skipping the crawling stage) at the age of 15 months. At the age of two,
however, neither boy had any words at all. Dylan, the younger of the two
(by fourteen minutes) had actually acquired one word, or more precisely, a
two-word phrase "Bear Book" but stopped using it after only saying it a
couple of weeks.

Thanks to my wife's persistence with the pediatrician, we managed to get
them evaluated at about the age of 2-1/2. They received the label of
PDD-NOS (Pervasive Developmental Delays - Not Otherwise Specified) and were
admitted to the "ARC" (which I -think- is Alachua (our county) or
Association of (or for) Retarded Citizens) where they got a sort of day care
and some limited therapy - mostly speech therapy.

At the age of three, they were entered into the public school system in
pre-K. Various tests were done on the boys to try to determine the cause(s)
of the developmental delays, but most came up with nothing. Dylan received
a CAT scan and was diagnosed as having "mild" PVL (periventricular
leukamalasia) which is scarring on the white (or grey?) matter of the brain.
A pediatric geneticist who looked at the scan told us he could barely see
the scarring at all, though, and more recently a neurologist who also looked
at it agreed. Both boys will soon be getting another CAT scan. The
geneticist had both boys screened for various genetic causes, none of which
were positive. He stated that in his opinion, however, it was something
genetic, he just didn't know what. He wanted us to come back in a year for
more testing, but our insurance would not cover it.

Both boys have finished Kindergarten this year, and will be entering 1st
grade this fall. Their speech therapist recommended a University of Florida
program for the summer called (argh... another acronym to try to remember)
MDTP? Which again, trying to remember what it stands for (wife always knows
these) Multi-diagnostic Training? Program? We were led to believe it was
going to be some kind of summer program for the boys, but what it turned out
to actually become (at least for us) was yet another long series of
evaluations. Fortunately for us, it was free

They started with testing their hearing, something that we'd done almost
yearly for years, again until the insurance would no longer cover it. This
time, however, the doctor specifically said that Dylan had an auditory
processing disorder, but did not go into detail that day. I'm sure we'll
get more specifics when the final team meeting is done (soon I hope).

Both boys also spent quite a bit of time with psychologists and a
neurologist.

On June 1st of this year, we finally got an "official" diagnosis (label).

Dustin and Dylan are "high-functioning autistic". They both scored
relatively high on a non-verbal IQ test, at about 114 and 115. Were it not
for their speech delays, they most likely would have been diagnosed as
Asperger's Syndrome, which is on the autism spectrum as well.

We should be getting more information, soon, as well as some kind of
"official" documentation so that we can get more help for our boys.

Is anyone else in this group the parents of an autistic child or children?

--
Fris "Ironic that we named Dustin after Rain Man Dustin Hoffman?" bee®,
MCNGP #13

The MCNGP Team - We're here to help!
http://www.mcngp.tk

Certaholics
http://groups.yahoo.com/group/certaholics

 




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