Yes, yes I am. I’m that Mom who has sat here and written and rewritten the beginning of this blog multiple times. I’m that Mom who has let the laundry sit in the washer for two days. I’m that Mom who has ordered pizza when I should’ve cooked. I’m also that Mom who has spent every morning on the phone with one doctor or the other or trying to get in touch with the Director of Special Services. I’m that Mom who is fed up with non-answers and no responses. I’m that Mom who has put my face directly in front of these people to get what my son needs. Yeah, I’m THAT Mom.
While things inside the house might slide a little bit, when it comes to what my kids need, I will go to the ends of the Earth to make sure they get it. Babygirl is on-deck for an appointment with an ENT to have an Audio Brainstem Response test scheduled to find out whether or not she actually is hard of hearing like her sound booth testing is showing. Kiddo is scheduled with the same ENT on the same day because he’s never seen one before. I was never informed that it was something we were supposed to do. He has fluid on both of his ears which is causing middle-ear dysfunction. So now we get to take care of that in a few weeks. On top of this, I’m trying desperately to get him into a place nearby that can handle a Deaf patient for a psychological evaluation to see where he falls on the spectrum. The new audiologist we saw last week asked if he had been diagnosed with a Spectrum Disorder within 2 minutes of meeting him for the first time.
See, here’s the thing… Kiddo’s entire life has been silence. For him, at least. For us, he’s been very loud. And that’s perfectly okay. We’re all used to it. Our lives have been one big adjustment. We adjusted when we found out he was deaf and we started learning sign language. We adjusted when he wore hearing aids and went through speech therapy. We adjusted when his Deaf gain was more than the aids could keep up with and he didn’t want to wear them anymore. We have learned more sign language, adjusted the way we homeschool and I’ve come to terms with the fact that he needs more help than what is within my capabilities. I am not a licensed professional counselor. I am not licensed in occupational therapy. I do not have the medical/educational background to help him in the ways that others can. But getting these services for him? I never thought it would be this difficult. We go through testing in sound booth last week, without an interpreter, me sitting in the floor, trying to interpret for him and also have a conversation with the audiologist which means, he loses access to the language around him because I can’t English and ASL at the same time. He doesn’t talk much. He responds to the sounds he can hear and says he hurt his leg. He says, “Yes” from time to time when he hears a sound. He tells them bye and says “I love you” because this is what he says to everyone when he leaves their company. I’m told yesterday in a phone call with this audiologist who, again, has met him once and observed him for less than an hour in a somewhat stressful situation where he was exhibiting exacerbated behavior of someone on the autism spectrum because, stress and new people, this woman tells me that he has no language. No. Language. She says because she only saw him sign 3 words that he isn’t fluent enough to be evaluated by a psychologist with an interpreter present since he has no language and what the interpreter says will be things he’s never been exposed to and he won’t understand. But couldn’t give me an example because she said, “They’re so tight-lipped about it, I don’t know what they would ask.” But you know well enough to tell me that my kid, that you don’t know has an extremely extensive vocabulary and will talk your dang head off for hours, has no language? And doesn’t need an interpreter?! No. He WILL have access to HIS language. Period. You can’t stop me, lady. And you won’t. Interpreters at all appointments, everywhere.
I’m not in denial that something is going on with my kid. I want validation that what I’ve thought for this many years was, indeed, correct. I want it documented, on paper, so that he gets ALL the right resources that he NEEDS in order for his education and his life development to flourish. I want what’s best for my kid. I will not stop until I get what’s best for my kid. No matter where that takes us or how many appointments we have to make or how many times I have to defend my child’s right to language access.
School has been in session for nearly a month and I can’t get the one person I HAVE to talk to at Special Services to call or e-mail me back. 5 e-mails, 4 phone calls. Not a word from her. Tuesday, I will be in her office, showing my face. God help me, hopefully not my butt also. I’ll keep my cool. Because Momma always says you catch more flies with honey. There’s so much more to all of this but I honestly can’t even start to process it all in order to write it all out. Just know that if you were to ever pass me in the street, yes, I am THAT Mom. The one whose hair is up in a ponytail and is probably wearing the same shirt from the day before (or the day before that) but don’t worry your pretty little head about whether my kids are taken care of or not. I will fight for them until the end of time. If you’re THAT Mom too, I salute you! Here’s to us! Giant coffees all around!
Til next time….
I’ll Clean, Cook, Sleep and Repeat….
CleanCookSleepRepeat 