Tuesday, March 12, 2013

Just keep your head up

I have often been told what a strong woman I am for doing all that it is I do for not only my son but for my family. I have felt on top of the world and empowered. The motivation and drive I have had has been unreal. How sad is it that it just takes such a small word, a sentence a person to completely knock you down and make you wonder why you are doing what you are doing, second guess everything you do and question your  own sanity?  It happens because we let others around us influence our ways of thinking. Some are better at resisting and ignoring others just take it all to heart and do worry about what others say about them. It sucks that some of us are wired that way and that people have to be so mean but at the same time sometimes people don't realize they are being mean. They are just sometimes uneducated, inexperienced or just plain ignorant when it comes to speaking to people on things they are not familiar with.
I have been proud of my quest to educate myself on ASD and what my son is going through. I want to help others and be more of an advocate and educator. However due to my own insecurities I sort of just kept my motives to the world of Facebook and those who are closest to me. I decided to throw caution to the wind and say screw what others think of what I am going through and what others think. What seems so small and trivial really got to me more than I think it should but at the same time left me wanting to make more of a statement. It all was over a poster for our H's walk team in April. Someone threw it away shortly after I left it in our break room and it left me ticked off. After some encouraging words from friends I decided to to create more posters and place them all over the place. It was an awesome feeling I got to just know that I don't care what you say or what you do this is who I am this is what I do and you can just get over it! The way my friends supported me on this was amazing. It really boosted my confidence and made me feel invincible.
I think what is hardest to deal with right now is those who spend the most time with him and don't take the time to understand him and what he is going through. The fact that he looks "normal" and acts "normal" is enough for them to dismiss his diagnosis. I don't want to look at his weaknesses and I know he has so many strengths but my fear is that if his weaknesses go unnoticed that this will only cause more problems later on in life. I want the absolute best for him and for him to know that we will fight for him with ever thing we have.
Today at speech while he was doing great and making progress the conversation that we had was not really comforting in my eyes. While she said he has made so much progress she seemed to discount my valid concerns and wanted to graduate him from speech maybe seeing him twice a month. While I am happy part of me is concerned because there are things that still need to be worked on such as being able to talk to others in a social setting, how to control his talking when he is worked up, overwhelmed and excited. There are other things that concern me about his speech but to me it doesn't matter now because after I said them she said "Well he has what P something disorder so that is part of it." I said yes he has Pervasive Development Disorder. The fact that she works with my son WEEKLY has a COPY of his diagnosis on FILE made me slightly irritated. Through a fake smile and clenched teeth I thanked her and left. I understand she has several patients but I would think with needing to know your patients diagnosis would be important when working with them. My child is not some client he is Hunter he is a child who needs a lot of help in the social aspects along with just day to day.
When I came home from dropping him off at school I let all these hit me and I finally decided that enough was enough. I called his doctor in Denton and spent an hour on the phone with her. I poured out all my frustrations and concerns and she was amazing. She addressed them all and made me feel so much better. She told me some steps to take when it came to preparing for our IEP meeting, how to handle his speech therapist and those who must interact with him who seem to not be aware of what his disability entails. She reassured me that I am doing a great job with him and that I will be his biggest voice and to not settle unless I was totally sure of what I was doing. While some of this is easier said than done I my focus now time and attention on the important things... Keeping my head up!