Sharing stories about their children!

People all over the world are sharing their stories! I love it!  Here is one from Tina Betler, just as she wrote it:

“Dear Karen,

I am glad you’re keeping up with everyone about your son. I
have to tell you, I was really kind of happy to find out that my first
son, Spencer, was diagnosed with PDD-NOS at the age of 18 months.
Although, I knew he had autistic tendencies when he was 8 months and
mentioned it to his OT when he was 10 months. I had taken Spencer to a
Developmental Pediatric when he was 10 months and they said he was
normal, he was a typical baby. Mind you, I already had Early
Intervention with the help of his regular pediatrician and my
pressuring. I had my Service Coordinator attend all of our appointments
with the Developmental Pediatric. So he was getting the help while all
of this was going on anyway.
I took him back 6 months later to the same doctor. Again,
there was no diagnosis given. Unhappy with their results, I wanted a
second opinion, of course. This one was without the coordinator. But I
had a gut feeling that all was going to go well. I had heard many people
talk down about this particular Developmental Ped. because of her
‘personality’ and others praise her. My thoughts were not how she
presented herself, but rather how she handled the testing she would
administer. We were in the room not 5 minutes and she said that I was
right about his condition! She noted it in her report too. We were there
for about a half hour when she diagnosed Spencer with PDD-NOS. I cried.
Not because of the diagnosis. It was because she understood my
frustration and my extreme persistence. I recommend her to many other
I didn’t get to see her for my second son. That was a bummer!
But I did get to meet a new doctor for Eric. He had two degrees.
Pediatric Neurologist and Developmental Pediatrician. He was really good
also. We had a GREAT conversation concerning Autism and Angelman’s
Syndrome, and the similarities and differences of the two. I also
brought up the idea of chromosomes and genes. To my surprise, the doctor
went along with it. He said he liked the way I was thinking. He was
quite amazed by my understanding of the medical field and my
enthusiasm.  I was skeptical that Eric had the same condition as
Spencer. They were totally different! After that, Eric went back about a
month later. I agreed with his diagnosis, PDD-NOS, Microcephaly, Static
Encephalopathy, and Hypotonia. Both of my boys received the maximum of
therapies: Speech, Occupational, Physical, and Special Education through
Early Intervention and Preschool.
Spencer’s diagnosis changed to Asperger’s Syndrome and Eric’s
is the same. But! They are doing extremely well in school and the
community. They get services through Lexington Family Services. Not just
Respite, Slumber Camp, Support Groups and celebrations. They make
friends all by themselves.
We  struggle through some days still.  Sleeping through the
night, homework time, emotional breakdowns, bath time, game time,  being
nice to pets ( getting better), sibling rivalry ( who gets most of Moms
attention!), picking up after themselves, hitting/slapping to get a
reaction (not to be mean, but to initiate play).


I am also on the Family Support Council and Autism Support Group, and am
trying to come up with some New ideas for new services. We’ve had a few
turned down. Have you used services  for Jonny that he really enjoyed
and aren’t a “typical” service? Something like: learning how to play an
instrument/s, cooking, dancing,  writing (books or plays),  One on One
Behavioral help?
We have Homework Club which was one of the best! Hourly Respite, After
School Respite, Autism Support Group, Parent Roundtable Support Group,
Strengthening Families (put on by another agency in our building), Girls
Cooking Class, and Music Therapy.”

Thank you Tina for sharing your story!

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