Taking the Scenic Route

This is going to be one of those rambling posts, so be warned.

My emotions are such a jumble right now.  I am frustrated and sad.  I have spent a lot of time the last few days updating my files, creating a nice neat notebook with all of Zane’s evaluations, plus phone numbers of all the different resources and all of his doctors and going through my calendar to list when the last appointments were for everything.  It is a pain in the butt, but it seems like the stacks of paperwork always ask all that stuff, and getting it all together in one place makes that process less irritating.  I have also been on the phone with various school people, trying to find the balance between being civil and lighting a fire under them to get moving on the evaluations for the IEP. 

It is such a colossal task when you are dealing with a large school system because everything seems to be done by committee, with dozens of people doing little parts of everything.  I am also a bit beyond frustrated with that school nurse and her inability to call me back and never answering her dang phone.  I know she doesn’t like me, but she also has that grating thing where she is sticky sweet to your face and you just know it is a total farce.  People like that make me twitch.  I just want to get past the neighborhood school and on to the one I will actually be dealing with. 

I also got another suggestion to go ahead and just let him come to the neighborhood school before the evals were done because they had a 5th grade kid with autism whom they were able to mainstream with supports successfully.  I made it clear that wasn’t an option for Zane because I was not going to take the chance of a negative experience for him.  It is better to have him enter the classroom a few weeks later and have the proper supports than to just “see how it goes” and take him on the first day.  He is challenged enough with the social aspects of a classroom when he has supports and I refuse to even attempt school without it. 

I am also waiting on calls back from the people who do the DD/MR waivers for getting things like respite care.  There is a large waiting list to get access to the services, so a part of me is wondering if it is even worth it.  Another avenue of frustration so far. 

And, the other thing I am waiting for is a call back from several places because I am trying to find somebody in town that does either music therapy or has some experience teaching music to a preschooler with ASDs.  I have always had music lessons in the back of my mind, but was not sure how to get that done with him.  Then I did some research and realized that I really need to pursue this for him. (links at end) I have always believed it is very important for kids to have music in their lives, and some form of music lessons will be insisted on in this house for all of my kids (prefer a few years of piano/keyboard as a base, but I also hope they will choose to play at least one other instrument as well). 

He has always been interested in music, and often messes around on Zach’s keyboard, but I am not sure how to actually teach him music.  My music theory and technique is rusty at best, and I know that the instrument that I am most competent at (flute) would not be a good choice for him.  He was totally taken by the violin/fiddle brought into the preschool class last week, but I don’t know a thing about strings.  Zach plays mostly by ear, and I play by reading.  Zach is a LOT better than I am at the keyboard, but neither of us is at a level where we have any business teaching it.  I haven’t even gotten to the part where I figure out how to pay for lessons once we find somebody, but we will cross that bridge when we come to it.

I think what is getting to me is when I am pursuing services for him, in order to get the services I have to talk about why he needs them, why we can’t just go the typical routes, and generally clear a path for him that he is able to navigate.  It forces me into the role of talking about negatives, deficits, splinter skills (still am annoyed that it is a ’splinter skill’ for an ASD kid, but for everybody else it is a ‘talent’), and generally, talk about my child in a way that seems so alien to me.  I just don’t see him that way, and I hate, hate, hate that other people do.  He is different and quirky, yes, but I mostly see him as my sweet, loving, fun little boy who is just the light of my life.  I hate being put in the position of protecting him from people who can’t deal with people who don’t conform to the ‘norm’.  I hate that people can’t just naturally be decent human beings and treat others with respect and love, but we all know that is, sadly, a rare quality. 

Once I get past some of this paperwork stuff and get back into a more normal routine, I will feel better.  It has to be done, and it sucks, but it is important. 

I pray I can find a good music therapist or somebody who has the ability and compassion to help teach him music.  I really think it would be good for him.

Music for the child on the autism spectrum

Music Therapy and Autism

Music Therapy and Language for the autistic child