I have long dreaded that I would become that mom...you know, that mom who is so ridiculous about her kids education. That mom who is at the Principals office everyday screaming at the staff, emailing the teachers, calling the teachers non stop. I never wanted my kids teachers to hide when I showed up. The one they call so annoying. I worried I had reached this point recently.
But I know now that sometimes it isn't because we want to or feel the desire to make someones day horrible. It's fighting for your kids well being and their future. I thought that Autism was going to be the hardest struggle but so far its not the Autism itself but rather the fight to get them the education they need. I wanted to type out deserve but I quickly reminded myself that school districts are only obligated to give adequate education, not exceptional. I actually read that statement in a court case where these parents were taking on the school district to get ABA services for their son but the district said no and that their son needs to be in their program which essentially was a watered down ABA classroom. So I can't say "what my sons deserve" because we all believe that our children deserve exceptional education. I say "need" now because there are certain things they need to be adequate in the education system.
Some issues have arose with the current education my sons are getting and all in a 4 week time frame. How can I as a parent allow it to go on any longer? Today I spent 3 hours on calls trying to fix it. Laying out evidence that what is in place now is not working and it will continue to fail. I had a plan before the IEP meeting and I left there with a different plan that I was uncomfortable with but knew we had to ride it out in order to prove that my plan would be better. In these 4 weeks I have watched my boys change and not all for the better. I know them well enough to know what components in their program are not the problem and what are. I have been doing this therapy intervention thing since before they were 1. I may not have letters after my name but I am sure not naive or ignorant.
In the IEP after every report was read I was asked if it sounded like my child. I said yes. If you ask me now I would say no. How far do we let our children go down the dark hole to prove a point to the bureaucrats that something is not working? The manipulation of parents because of our lack of knowledge is obscene and tragic to our children. Politics are alive and well in the arena our children are suppose to become productive people...educated people. I wont play roulette with my sons future. I just cant.
throw in a miniature candy in the center.
After all that the boys had their first session with the new Speech and Occupational Therapists that are on site. These are the same people who will be working on the eating issues/oral motor issues that they have. My boys stuff their mouth silly with food and will pocket the food as well. According to the school district this is a health and safety issue that needs major attention. After two weeks of waiting for someone to contact me on their start date I had to ruffle some feathers and it moved faster once I
yelled emailed at the right person.
During the sessions I focused on being there for the Speech part as I had already become a little familiar with the Occupational Therapist before. The Speech Therapist was getting a basis for where their skills are and flash cards came out.
I knew when they started school that one day there would be an awkwardness about a certain word...a certain name. In school I remember on Mother's Day we would make cards for our moms and we also did this on Father's Day. The word Father is a common word in most households. Its assumed that a child has one until further conversation and observation. I knew when the boys started school and holidays were celebrated such as Valentine's Day, that the word Father and Daddy would come up for Father's Day. What I didn't prepare for was just simply learning the word "Daddy".
The therapist held up a card of a cartoon man with a child. She said "daddy" to both boys and neither of them said the word back. They have never used this word and its never been a word that they have had to use. There is no one to associate this word with. The cards before this one and the cards that followed were easy for them, but this one card they were silent. It went into a pile of cards to be worked on.
I am sure there are some people saying that I am reading to far into it. Well, maybe. I know that the flash card was more for teaching the boys the sounds and then the full word... daaaa, deeeee... daaaaaadddddddddeeeeee. But to think that they will learn the word and that leading to what the word means, to learn there is a day to celebrate these... and then to learn that most of their friends have one.... but they don't, this is what I worry about. Seeing that they will be taught to say "daddy" or "father" means we are that much closer to the day they ask. Once they get a hold of what that word actually means its going to be one hard lessons for them and for me.
I cannot ask for them not to be taught that word, just like I cant ask for them to not be taught how to undo a door chain. Its letters and sounds that they need to learn. This is a train that I can no longer hold at the station.