I can have countless conversations, while asking for advice, that go something like this, "Just change his IEP" or "Put that in writing" and my favorite, "Make sure you are nice about it." My biggest question that I ask myself is, "What can I do to get through my worry?"
I am going to worry. I know that living this life with Sam, the worry will never go away. I personally feel that this concept called worry is what keeps me on my toes. To all of those that think that worry has no use I have to politely disagree because it works for me.
While on vacation in Maine I stumbled upon a post about how Sam's school has changed things around and I don't know who will be the Autism Specialist and who will be Sam's new Vice-Princiapal. What the heck can I do about any of this and what is worrying going to do while I am hundreds of miles away from home? Worry gets my wheels churning and the seeds of "what's next" are planted. Raising my daughter was so different because she didn't face the challenges of Autism and I felt little need to be involved in her schooling. She was in good hands. I cannot have that blase attitude with Sam because if I am not in the ring of education nothing will get done. I have no faith in the school system that is supposed to take care of Sam and to get him as far as his capabilities will take him.
The biggest challenge for me is when the worry changes to anger. Anger can also fuel me forward but when it grows, sometimes exponentially, the wall between those that I am communicating with are sealed with air tight cement blocks that is my stubbornness to stop listening. I have little use for anger so I continue on my path filled with worry stones that remind me that I have to continue with the fight.
I have to then ask myself, "Who am I fighting with?" Is it myself or is it with others that I feel should be doing a better job with Sam. Recent memories haunt me of sitting with the school psychiatrist as she tells me about Sam's snip-its of intelligence making me feel like she is saying that we just can't expect too much of him. Worry sits on my shoulder as the powers at be tell me that they would prefer a non-trained professional to help Sam with the Assisted Technology. I just do my best to sit back and politely tell them that it just isn't good enough. And there are those that think that I should just get used to the idea that Sam will not go far in life because of his disability. My job will never be done and I will lay off the school professionals when he is twenty one.
So for now I have to figure out what I will do with my worry until school starts. I will write my emails and make phone calls and write letters to make sure that meetings will take place at the start of the school year. I am going to do a better job with taking notes. I will put everything in the IEP such as my need for documentation for the Assisted Technology. I will do my best to be nice. I am Sam's Mom and this is my job and I am going to do it well.
There is one thing that is on the top of my list to stop worrying about. I will worry less about what other people think of me and how I raise my son. I have many wonderful people that "get it" in my life. This will be enough for me. Thank you everybody.
Sincerely,
Debra Pierce Bellare.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
