AAM Guest Post: If I Knew Then...

Once again, I am pleased to be able to share the #Autism story of another family whose story brings another piece to the puzzle.  I've been friends with Cherokee for several years, having met through an online pregnancy and baby site and we've kept in touch regularly over the years.  Her story proves that it's never too late to get answers and make connections:




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..."