Sometimes I feel I am the worst advocate for my son.
I don’t openly talk about him and how he is, what he is like or who he is. (Unless it is on this blog.) But in my defense I am not one (never have been) to talk about me or mine. I cherish my family. I know who we are, how strong we are, how much love flows through and around us because we have each other. But I don’t need to talk about it with everyone and that is what I feel I am doing when, in the off chance, I actually talk about J. Then when I do talk about him it may last for a minute, at the most two, and then I’ll turn the conversation back onto the person I’m talking with, ‘how’s everything with you?’, ‘how’s the kids?’, ‘did you have a good weekend?’ etc. It’s a bad little habit. I want to be able to talk freely about J without feeling like I’m boring the person who asked or share a story about J when a group conversation leads to kiddos. I need to gain more confidence to do this, to be myself around others, to talk about my son so others gain an understanding of who he is, what he is like, the good, the bad, even the difference.
Then on the other hand, I need to stand up against the intolerance towards J. Stand up to those who appear to be afraid to talk, associate, even be around our son. They need to be called out for their actions, for they speak louder than works. If they don’t/can’t figure out how to talk and act friendly towards our son, they will be shown. Just because he doesn’t speak, doesn’t mean he does not have feelings.
I will say though that I am a closet advocate, doing everything I can think of for J that I don’t talk about much. IEP readiness, confirming goals have actually been met and coming up with new ideas. Therapies: you name it, we have researched it and/or tried it; speech, OT, PT, behavioral, ABA. We have read and researched additional ABA techniques cause even though we liked the services, we weren’t able to afford it but we are on a waiting list for a program that we hope will be better suited for us all, maybe we will get in this coming fall. This will be the first summer that we sign J up for recreational activities; baseball and hopefully swimming lessons. We are figuring out how this summer will work as daycare is no longer an option for summer care (more to come on this later). I have researched essential oils and their positive affects to improve behavior. We have discussed to med or not to med, we agree not to right now, not our cup of tea and the longer we can wait before this is a must, the better. We have started estate planning and discussing J’s future, life insurance. We continue to research for items to label our home and cars properly notifying law enforcement or emergency personnel a person with autism may be present. We try to stay up-to-date on activities taking place in our community for those with autism. And the list probably goes on, I just can’t think of everything right now.
Therefore, in 2017 I vow not to be a closet advocate alone. I will talk about my son openly, sharing all the joy I feel for him and sometimes the dismay. If you ask me about J, I will be telling you stories and not gazing over the topic for if you are asking you likely truly care. But for those of you that are asking just to be nice, you have been warned. I will stand up for J with those who are at odds or seem afraid to talk to him, I will show them how to do so. I will not hide my son, I am in awe of him and want to gush about him to everyone just like any other parents want to.