Alex...ASD...Asperger's Syndrome and Us

I have hesitated to post this blog post for a long time...for two reasons.   One I have been concerned that I am putting too much of our life out there on the net.  I have been worried that Alex might be impacted in some way be the choices I am making on this webpage.  The second reason it I am was really waiting for that confirmation that we had this diagnosis. I didn't want to put it out there and then have to back peddle and say oh no...that wasn't it at all.   I do want to be truthful when I am posting..or as much as I can be,
This all being said..,Alex's privacy has been my biggest concern.  He is after all only 8 and has a long way to go.   Over the last few years we have been on a journey with Alex and it has been a windey one.   It really goes all the way back to Parents as Teachers and have some hearing testing done because I was afraid he had some hearing issues.  No one seemed overly concerned that it never changed.   We went to preschool with an overly active kid and into kindergarten with a kid that wouldn't sit still.   The first couple of teacher wouldn't come right out and say there was anything wrong or that we needed to be taking any steps with him.   I would ask is there anything we can do at home to help out.   We would get no information or "just remind him to be good in class"  "tell him to make sure to sit still during quiet time" "make sure he knows that he needs to be quiet sometimes"...it was maddening!  He came home upset everyday because all the other kids were getting happy faces and he was getting frowns.  He just couldn't get it together.
We were leaving Bloomington IL so I scheduled a sit down with his teacher and asked her point blank...do you think Alex has ADHD?  I also see some signs of autism and Asperger's...she said "oh I don't see any of that..he's just an active little boy and you have nothing to worry about."
Of course his dad was relieved and said we needed to put that rest because I had been driving him crazy about this for a while now.   I was not...I just kinda knew that something was not right and we were in for a bumpy ride.  When we got to Salina things did not get a whole lot better.   He found out that his teacher was a lot more involved and wanted him to do homework...my nemesis!  She also met me outside everyday and gave me a report on how Alex was doing.  She wanted me to know he was a great kid and Super Smart...but he was struggling in the classroom.  He was going to do well with some help.   "What?"   He needs to see his doctor...
Of course she can't in her professional opinion tell me that my son to see his doctor, but if it were her child she would take him to see his doctor for an evaluation for ADHD.   "REALLY, you don't say?"
So we went to the doctor and dad and I filled out a survey, teacher filled out a similar survey...if that survey had been read properly at the time it was given when her was in Kindergarten we might have gotten an ASD (Autism Spectrum Disorder) diagnosis then...but the doctor at the time glanced at it...read a few questions and said yep...he has ADHD.  Here is a prescription.  I want to see him every month to check weight and height, have a good day.
Six months went by and we had to increase medication to keep up with a growing boy.  We had to change doctors because our pediatrician was out of town and we found a new one that treat Alex and he really liked her a lot better.  It became apparent quickly that this pediatrician was interested in making sure Alex's needs were met...she began to explore the idea that Alex was in fact on the spectrum and referred us to KU...but that was going to take a year.
In the mean time Alex was struggling at school...with friends, with grades, with tests, and with the teacher.   I decided to go sit in his class one day and observe him the whole day.   It was sad how much of the day he spent distracted.  We had asked for an evaluation at the first parent teacher conference in October...my sit in was in December...nothing had changed in the classroom for him.  He was struggling and I could see why...it was loud and crowded and detracting.     He was going to have a hard time getting anything done in that setting...all the kids faced each other and he had to work with then all around him.

While I was at the school the lead teacher asked me if he was seeing a counselor for the ADHD?
"No, why would he see a counselor?"  Most doctors recommend counseling when you have a child on medication.  "HMMM...I never knew that?"
So we started counseling, it gave Alex someone to talk to other than dad and I.  It also gave him some tools to calm down when he was upset.  He was having these horrible meltdowns...and we couldn't figure out where they were coming from.   In  a couple of counseling sessions we talked about the lack of friends and how mom often had to help him form friendships, and help him maintain them.
I mentioned to his counselor my concerns about ASD and she said she would like to explore that further and had us fill out the survey that we had filled when he was in Kindergarten again.   This time they were scanned by the machine and it showed some autistic tendencies.  It was funny though that the teacher and I answered the questions very similar and dad answered them different.  I could only chalk this up to dad being so similar to Alex.  He is the very image of his daddy sometimes.
At this point the counselor thought it best to refer us to a psychologist in the field for further evaluation.
So that is what happened...it was a rather long interview with lots of questions and Alex was everywhere...of course we had not been able to give him his medication for several days...so he was kind of all over the place.   Thank goodness this doctor was really a children's doctor and he was amazing with Alex and so understanding of all of our concerns.  We walked out of there with a new better understanding of Alex and it is evolving.  He is an amazing little guy and so interesting.  With everyday we learn a little bit more about this fascinating kid and all the little sides of his little world.   Autism Spectrum Disorder is part of his world...it is part of our life...it is not Alex and it not him.  It does not complete his personality or make-up who he is...it is just a little piece of out world that is in his life and it is in our daily life.

If you have any questions please feel free to ask.  We are open to questions.