Wednesday, April 16, 2014

The Beginning

Well, here I am beginning this blog.  People may wonder why I would want to do this, but frankly, I am hoping that this will be cathartic for me.  You see, I am married to and a mother of persons with Asperger's Syndrome or high functioning autism or now the new DSM-V label of Autism Spectrum Disorder.  While my husband has not been formally diagnosed and my son no longer fits under "the Spectrum" thanks to the new diagnostic criteria, trust me, I deal with the quirks and idiosyncrasies of this condition in both my husband and my son.  This means that I get to live with the adult and the child version of this and at night when they are both tired and are both stimming . . . . . . . you can bet it is reeeeaaaalllly interesting around here. 

What's even better is that I am a trained professional mental health counselor that NEVER dreamed I would be doing therapy in my own home with my own husband and child 24/7 at this level.  I mean, sure, what woman doesn't have to do some type of therapy with their husband and children in a normal situation?  But when you live in an Aspie world?  Honey, you are living and doing on a whole different level!

To let you know where this journey began, I need to start back to when my son was a baby.  I always knew he was different.  I mean how many 6 month olds do you know that when coming into a room scans it to make sure that everything is in place as he wants it and if not, crawls over and adjusts whatever is out of place in his mind and puts it back?  For example, every morning I would shut a little window in a playhouse that he would play with and every. single. morning. he would crawl over and have to raise the window up.  Also instead of just playing with his toys, he would have to carefully study it and determine how it worked and/or would attempt to unscrew any screws there may be to take it apart to see how it was put together and this, ladies and gentlemen, was when he was an infant!

As my son got older the quirks became stronger and more noticeable and he became harder to manage.  Something was just off.  I kept telling his pediatrician that something was going on, but she just kept dismissing me and telling me that they would wait until he was in elementary school to evaluate further.

Having a nephew with Asperger's that wasn't diagnosed until age eight and seeing the struggle his parents had to getting him help and dealing with the school, I wasn't about to wait to see what was going on.  Through my own training and research that I did, I knew that the earlier the intervention the better luck we would have in helping my son assimilate with the rest of the world.

So in July 2013 we had him evaluated by a local pediatric neurologist who specializes in autism.  The outcome was that yes, he had a lot of the Asperger traits.  However, with the new DSM-V criteria and the powers that be removing Asperger's completely from the DSM and instead saying it falls under Autism Spectrum Disorder, they could not say he fit "the Spectrum."  Instead they labeled him with ADHD and Sensory Processing Disorder.  And then wrote a several page long report as to what types of services and therapies he would need that essentially said "this kid has Asperger's but we can't say that officially." 

At first I was happy, I admit.  I didn't want him to have the autism label and the public stigma that went along with it.  However, I quickly found out that in the great state that I live in, because he does not have that diagnoses, he does not qualify for ANY autism type services because they are Medicaid paid only and he can't qualify for Medicaid with his current diagnosis.  Also our insurance refuses to pay for anything because they consider his issues to be attributed to developmental delays and therefore are not covered under their policy.  The only thing they would cover is individual cognitive behavioral therapy.

So that is where we began.  I found out that in my area there are only two therapists that specialize in this area, and out of those two only one takes private insurance.  Consequently, that is where we began doing therapy. 

To make a looooooong story a little bit shorter:  Having been trained to cognitive behavioral therapy and play therapy myself, let's just say this therapist is NOT a specialist in this area even though she has sold herself as one to medical professionals in our area.  After only three sessions, both my husband and I said we were done. 

I then took my son to a developmental pediatrician and he gave me leads as to who the "experts" are in our area.  I called and talked to them, and several others locally and in other states and was repeatedly told the same thing:  "Yes, your son has issues that are severe enough to be problematic, but not severe enough to qualify for any services in your area/state.  You are going to have to do the therapy yourself and become the expert."  Greeeeeeeeaaaaaaat!  This meant that I no longer was just "mom".  I now was mom/therapist and am dealing with therapeutic issues 24/7.  The good news is that when I told the experts everything I was doing, they told me that I was doing everything that they would do and I was on the right track.  The downside: I get no break or help.  Even in my private practice that I used to have I got to go home at night and not have to do therapy or think about it if I didn't want to.

It is also a complicated situation because the more I researched/studied, I realized my husband was the exact same way as my son, only an adult version.  He even repeatedly will say, "He acts just like me when I was his age."  (To which, honestly, I just want to slug him and yell, "Then you deal with this!!!")  Needless to say the two of them have a lot of conflicts because in our Aspie world when they are tired/stressed, they both begin stimming which consequently, exacerbates their frustration and stress and they butt heads.  This means that not only do I wear the hats of wife, mother, and therapist.  I also play referee A LOT!  Not to mention I also have two little girls who are a year a part and are currently almost two and almost one.  Needless to say, I am constantly B-U-S-Y!

So this is my world that I live in.  My son is currently 4 1/2 and just finishing his first year in preschool.  Our world can be interesting and quite comical, but also exhausting, frustrating, and lonely.  That's why I am here:  To vent/share/yell/cry/laugh/sigh. 

My grammar, spelling, and sentence structure will not be perfect, so if that bother's you, quit reading.  This is my blog and my space and in a way my own therapy for me.  If along the way there is someone out there that it may help or give a moment of, "Finally, I found someone who understands!"  Then even better!  Because trust me, the Aspie world can be a very lonely world for the neurotypical (NT) caregiver.  Many people shy away because they are scared that they might "catch" it or of the unknown aspect of it.  Consequently, the caregiver is shunned as well, but more on that on another day.

Until then:  sit back, relax, and welcome to our journey!

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