Mixed Opinions

I am continually amazed by the people and opinions I come across in this journey of ours.  I truly had this image (before I ever started) that every professional I would have to work with, would have the best interest of every child in mind, they would know what needed to be done and move forward.   While I truly believe that those in the medical and educational fields do mean well, I am amazed at the double talk, I constantly get.  Everyone wants to undermine the other person and they contradict themselves wildly.  That is just appalling to me.

Several months ago, I approached Sam's preschool teacher with the idea that he could have autistic tendencies.  I have noticed things from the time he was little, but whenever I bring them up, people often brushed them aside.  This time, I pushed harder.  I requested an evaluation be done.  But I didn't stop there, I went out and set up my own evaluations to be done privately.  I wanted to cover all my bases. 

The first evaluation to come back was from the school.  We didn't get the initial results from the school psychologist, but rather from the preschool teacher basically telling us that the testing showed he was fine and that he wasn't on the spectrum.  I was so excited!  I told everyone.  A week later, we got the results from the private psychologist.  He diagnosed Sam with PDD-NOS secondary to his xxyy syndrome.  We took that information back to the school only for them to try and undermine what this Dr. from the University of  Utah had told us.  They said he used outdated tests and basically that he was either wrong or it didn't really apply to Sam in the classroom.  The school pyschologist actually told me that his social problems were not a big deal and didn't need to be addressed now, however, they would keep that diagnosis on file so that if he struggled with friends at a later date, then they could see about doing something about it.  What?  That makes no sense to me.

Then there is the ongoing debate for children with ASD (autism spectrum disorder) and other developmental delays on whether they should be taught with a behavioral approach or a sensory approach.  The school (at least in our district) will only approach it from a behavioral approach.  However, new studies show that if you can reach a child at that core level and work on fixing what is causing the problem, you have a chance of building a real relationship with them and helping them to develop into higher levels.  The behavioral approach mostly teaches patterns and scripts.  I'm sorry, but I want more for my little boy.  I don't want him to go through life with memorized scripts to say in social situations.  I believe, with all my heart, that he can have more!  I want him to feel and share love!  I want him to experience this big, beautiful world in the way that most of us are able to and take for granted.

I have been reading "Engaging Autism" by Dr. Greenspan.  It teaches DIR or the floortime method.  When I asked the school psychologist about her thoughts on this method, she told me she didn't know anything about it.  Am I crazy that I don't want my child to go through a system that is not even willing to look at other types of beliefs and methods?  Am I crazy that I don't want something so strict and structured that it forces my child to behave perfectly within their model and completely fall apart at home or in outside social situations?  On some levels, Sam has improved over the past year in school.  They say he is perfect in their setting.  However, his behavior at home has completely deteriorated.  His relationships with those closest to him are distant, most the time.  He pulls away from my touch 90% of the time.  He rarely makes eye contact with me and he has yet to spontaneously express love to me in any way.  If I tell him I love him, he looks away.  I want more, and I refuse to put up with what this school is offering.  I truly don't know how I will accomplish this.  There is an amazing private school that I would love to send him to, but there is a waiting list and expensive tuition.  But, I want something different then what the school is telling me to do and what they are offering.

I know I will find the answers, and I know there will be little moments of pure joy because I am willing to fight so hard for him.  One thing is for sure, I am done fighting with "the system".  I only have so much energy.  I choose to put that energy into Sam and my other children.  I won't spend another precious bit of my time on a system that is broken and failed.