Sunday, June 16, 2013

Welcome to Autism

When Max was a baby his first Pediatrician was a guy named Dr Kothke.  He was okay, seemed well informed, mostly answered all my questions with "he seems okay to me"  On Max's 2 year visit I mentioned that Max layed on the floor on his chest with his legs crossed for like a considerable amount of time.  The Doctors  response was that maybe he was bored.  Bored really?  Thats your answer? 

We didn't really need to go back to the doctor between that visit and having Sam.  We had Sam and took him to a different Pediatrician and liked her fairly well, even after she told us Sam has a genetic disease we still liked her.  I decided to switch Max to her as well.

So at this point Max is 3 years old, his speech is a little behind but not too bad but he is still doing his leg crossing.  I make a special Apt with our Ped and ask her what is up.  She talks to Max, makes sure he makes eye contact, knows his colors and says he is fine.  Okay

At this point I am so busy shuttling Sam around creation to his appointments i'm not sure I would have noticed if Max grew a second head.  Well the leg crossing continues off and on and at some point Max add rocking to this repitore of things he does.

Max starts preschool, in October his teachers want to know what on earth my kid is doing on the floor.  I tell them he is leg crossing "floor humping" and I don't know why he does it but the pediatrician isn't very concerned.  Max starts to rock in his chair also and the teachers keep grilling me on what is going on with him. 

After a 20 min phone call to the Pediatrician I am assured Max is fine he since his academics are very good the strange movements are steroetipic behaviors and he should out grow them.  Okay.

His preschool teachers are still concerned so I video tape his episodes and show them to Sam's occupational therapist, 2 therapists actually.  One didn't really know what he was doing and the other thought he was just centering himself.

At this point no one knows what is going on and I am tired of asking.  Jeremy and I even tried taking him off of wheat in case he had an allergy or something and still he floor humped and rocked.

A couple of monthes ago one of Sam's teachers from early on came over to the house for a home visit.  Max starts doing his leg crossing and she says "what is he doing"  I tell her no one knows but more and more I feel like we should be more concerned about Max then Sam I just can't get anyone to listen to me.  She says we should talk to an occupational therepist becuase he seems to have some sort of sensory issues.

So I call the pediatrician again.  I tell her again about Max's behaviors and she again falls back on how good he is in school.  I tell her I just want a script for OT and she wants to know what for.  Sensory stuff I guess I say.  She thinks if we are really still concerned we should see some one named Dr.Bowers.  Fine lets do that.

So our appointment was last Monday.  Before we get there we had to fill out like an 8 page form about our kid.  There were all sorts of questions about how his delivery was to how old he was when he first held a spoon to when he was potty trained.  The more I filled out the more I wondered if maybe we did have a problem.  I mean know that you ask, yes max majorly freaks out when a train goes by.  He hates to have his hair cut, he prefers is waffles to be frozen, he hasn't shown a hand preference and he was a late talker.  Or maybe we are over reacting and he is just weird. 

I show up with video of said behaviors in hand.  I meet a very nice man named Dr.Bowers who talks about all his strange behaviors and some other things and basically tells us he is on the spectrum.   The Autism spectrum.

He tells me that as we are sitting here talking Max pretty much ignores us and that the toys he chooses are all linear based toys.  Trains are a very linear toy no imagination involved.  So my kid doesn't have an imagination, super.  He goes on to say that his teachers probably loved him because he is a cute little kid that doesn't make to much noise and can say the alphabet. 

So from here we have OT and Speech therepy to begin soon.  We will also have some therepy when he is in school.  He isn't supposed to ride the bus since that is a time when he rocks the most and I am to make sure he is engaged and not off in la la land, or going down the rabbit hole, as Dr. Bowers put it.   We are also going to try something called the play project, which I hope will help him with the imagination portion of the problem.

So the next couple days I was pissed off.  I was pissed that it took this long to get a diagnosis and I was pissed that I know have 2 special needs kids.  I mean really 2 kids with IEP's  really?  I am fairly certain I don't have the patience for this.  How do we dicipline him know if he rocks when he is im time out?  How do we deal with his melt downs know that we know he has a problem?

There is a quote I love  that goes "failure to plan on your part doesn't constitute an emergency on my part"  I feel like I am living this right now.  I feel like I have all this stuff I have to do before he goes to school that we could have been doing years ago had anyone listened to me in the beginning.  Its summer we are supposed to be playing not doing behavoiral check lists. 

I stopped whining yesterday though.  Yeah I am still frustrated as heck.  I so wish we had found out sooner but I cant change that.  I find my self dealing with this much as I delt with Sam's diagnosis.  I had to have CHARGE free days.  Today I had an Autism free day.  That means I didn't read anything about it, talk about it, or do any related paper work.  Well except for this post. 

I hope we get some info next week, this we know he has autism but are waiting on therapy is kind of weird.  Oh well.


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