My son has Autism…there I said it…It took 12 years from when
I first noticed something was “off” with him, but finally, we have a name for
it…I have to go back in my memories …and there are quite a few…
I guess you could actually go back to when he was a baby and
wasn’t hitting milestones like all the other kiddos his age…He was born with an
Atrial Septor Defect (a hole in the heart that would never heal on its own) and
I had him operated on at the age of 22 months…(Thank you Maj. Corcoran at
Walter Reed Army Medical Center)..then there was the RSV when he was a few
months old, or the meningitis at about 10 months old..He had a rough
start… fortunately, I was stationed in
Washington DC which had many resources available…I didn’t have to go overseas
for the military…I was a single mom til he was 9 years old til I met the man I
am married to now…
When he was three
years old, I enrolled him in Francis Fuchs school in Maryland..its a school for
handicapped kids…The said he had a “developmental delay” but that was about
it..his speech was very delayed…He went there for 2 years for preschool and
kindergarten, then I enrolled him in a local elementary school but he was in a
special ed classroom…I had made a poor choice in a caregiver (she was local and
I could afford her…) She was nasty to him and made fun of his delays all the
time…I regret that choice often…
Circumstances changed and I packed him up and came back to
the west…we finally settled into Montana, where my parents lived…We moved right
in with my parents and he started in the first grade just down the street from where we live now. In Montana, there is no IEP
code for “Developmental delay” so they changed his “codes” to “cognitive delay”
and “speech delay” We live in a very
rural area and at the IEP meetings,( where I would cry often) they couldn’t send us anywhere to get
tested…When he was 7 I took him to Shodair Children’s hospital and had him
tested for genetic issues, particularly, Fragile X syndrome…all tests came back
negative..we still didn’t have any answers.
Elementary school
was “ok”…my husband, who I married when Nate was 9 adopted him..It gave us a
lot of stability…At the end of 4th grade, the Special Ed supervisor
called us in to her office (this woman should have retired many years ago) She
advised that although Nate was ready scholastically for 5th grade,
she didn’t think he was ready socially…it was a difficult decision, but we did
have him repeat. It did turn out to be a good decision…
Middle school (grades 6-8) was really unnotable. The kids
all knew it was “nate” and tho he didn’t have any close friends, he was
generally accepted. We came up with goals at his IEP meetings, but still no
diagnosis…that was hard… No one knew how to help the source, we all just
treated the symptoms…we (the teachers, the special ed counselor, etc) did the
best we could do with what we had…He had many little quirks…he would seriously
‘disappear into his own little world”..and you’d have to get his attention to
bring him out…he would have conversations in his head from movies or tv
shows…his memory was excellent, but the things he chose to remember weren’t..
Then came Freshman year of high school…
Nate went to a very large school…over 1000 kids..I was very
nervous for him because here he was used to a rural school where everyone knew
each other, and all of a sudden, this little fish was going to be let go into a
very large ocean…and the first semester didn’t go well…At. All …You see..Nate
is very blunt…if he thinks it…he will say it…there is no “social filter” and he
will say whatever he thinks. This has caused me embarrassment on many
occasions…Well..when your highschool freshman goes up to a football player’s
girlfriend, and says “you have very nice breasts”…it can cause some alarms to
go off!!! He avoided getting beat up
that day because some faculty intervened..
The call that changed our life….
In November of 2009, we got a call from the high school
counselor…she suggested we have Nate tested…she sent us to a wonderful woman
named Dr. Jenny Simon-Thomas…this happened over Christmas break of freshman
year…The counselor had looked at Nate’s file that came from the middle school
and said “there is MUCH more than “cognitive delay” going on here….Dr. Simon-Thomas
spent 6 hours of testing on Nate..she had the school fill out
questionnaires..she had us fill them out…She interviewed us..and a teacher at
the school..and Nate…she is an amazing woman who we recommend to our friends
with kiddos with similar issues. I had her call our Middle school and introduce
herself so that other kids wouldn’t fall through the cracks like our son did…I
felt a lot of guilt that we didn’t know sooner and a lot of heartache could’ve
been avoided…but I was reminded to keep looking forward…
January 20, 2010….
Dr. Simon-Thomas
called my husband and I to her office…she sat us down, and I said “its
aspergers isn’t it”…she said “No, its full out Autism,, though he is high
functioning…he also has ADHD..thats why he can’t focus on schoolwork (hence
outbursts and tv conversations in his head)
She explained all the results on the tests…its like she had known him
his whole life…She had 19 pages of results, recommendations, reasoning..etc She had ideas for the school to
implement..she had “next steps” for us to do as parents…It was like the sky
opened up and this beautiful beam of sunshine came into our lives and finally a
“name for it”…
Today…
That was a little over a year ago…Dr. Simon-Thomas suggested
we get him on some medication for the ADHD…Nate is now an A and B student…he
told his dad one day “Dad, I can finally take notes in class”…It was also
recommended for him to start seeing a counselor to help with social skills and
role playing..Julie is the best thing since sliced bread and last year he was
seeing her once a week, but is doing so well that its now every two weeks…Our
IEP meetings are filled with hope for the future…We (his special ed counselor
and i) say there are “two times in Nate’s life..Before diagnosis, and after… “ Nate is “ok” with his diagnosis, and he often
asks questions about it “where did I get it…do you have it mom”….He watched the
movie “Rainman” and understands that Raymond in the movie had severe autism and
he has “high functioning”..Nate is a wonderful big brother who loves Harry
Potter and video games…he is a skinny and tall thing who likes History and
geography…He has glasses and braces…and a great personality..oh..and he has
Autism..but that’s just a little piece of his wonderful puzzle!
Bio: Cherokee is a busy mom to 4 boys and is one of my few online friends who is not yet a blogger... I love this part of her facebook bio, so I'm re-posting it here: "My house is never perfectly quiet or perfectly spotless...but I have come to realize that Sanitation and Silence are overrated..."
