Saturday, March 24, 2007

The Interim November-December 2006

Geez, having a child that is deaf is soooooooo NOT easy. It would be easy it if I was already well versed in sign language and had been using signs with Max since birth, but we didn't know he was deaf therefore I'm trying to cram in a language and teach him. Our communication is limited (Problem 1). He is nearing the terrible two's and has started to practice a little early. I had asked someone how I was supposed to handle some of the things that Max does, such as pulling his sister's hair, pinching her, all the good stuff siblings do to one another. It's my responsibility as a parent to stop this behavior, right? So I asked how I should go about doing this. The woman knew just how I was to handle this. Great, I can't wait because this really is nerve-wracking and it makes the ugly side of me come out in full force. She gives me phamplets that tell me I'm supposed to sit down and explain to him why he cannot engage in this behavior. Ummmmmmmmm, have I mentioned that our signs are very limited? I can't sign to him, "Max honey, you can't pull your sister's hair. That isn't nice and it hurts her. Don't do it or Mommy is going to have to either make you sit by yourself while you think about it and if you continue to do it I'm going to smack you on the butt to emphasize that you are NOT TO PULL HAIR". This will not work for us. I'm frustrated. See there are no answers in all of this. I could sit and look up all these signs for this and then sign them to him, but he will have no idea what I'm trying to say. In fact, I'm sure he would think it is funny seeing Mommy desperately flapping her arms like a bird, then we would be all off track as he signed bird and pointed to me. Besides the frustration of feeling that you are limited in discipline, there is also the frustration of not being able to explain. I can't explain to him, and my explanations to my daughter about his behavior sound cheap and small and unworthy even to my own ears and I'm saying them. Let's also talk about when he is doing something further away from me, I can't yell "Stop" or "No". In the house I can stomp on the floor to get his attention since he feels the vibration, but outside or in buildings that have concrete floors there's no stopping him. This is a challenge and sometimes a race that repeats itself over and over again. He runs, I run and stop him and sign no. He runs again and again I run and sign no. Over and over. Back to problem No. 1: Limited Communication.

Problem No. 2: A Whole Lot Going On.

I'm sure that anyone with a child that has special needs can tell you that there is a whole lot going on. Max has speech therapy two times per week, he goes to a playgroup on Monday mornings for kids with special needs, he goes to the Deaf Oral School toddler group, (which is over an hour away) once a week and then you can throw in doctor or audiology appointment, and a sign and play group once a month. Whew, just writing it all down wears me out. This is on top of the normal activities in a household, cleaning, paying bills, errands and even though other people talk about this I have yet to experience it, relaxation. I ride the wave of guilt constantly over this whole lot going on. I have guilt for my daughter who is 6. I try and try to have time with just her but it is soooo hard. I didn't get her girl scout patches sewn on when she got them and now some are missing, her little bag that they were supposed to be sewn on was blank for months. I've missed things because Max had an appointment here or there, or I was just so rundown and tired I simply forgot.

Can you Hear Me?

Sunday, March 18, 2007

The Interim 2006

Max's deafness obviously comes as a shock. We don't have any deaf people in our family. I don't know any deaf people. Of course I live in hillbilly heaven and there's not a lot of people but I still don't know what any of this means. First Steps, which is exactly what their name implies, is our state's early intervention program. They provide us with a speech therapist twice a week (Ha! That's funny considering my son is deaf, but she is supposed to help with total communication which is sign and spoken language) and give me booklets and phamplets that have different organizations that we can call. They fill out forms for us to try and get Medicaid or Medicare and send those off, and they get me in touch with a man who is supposed to be able to help me. His name is Jay Cherry and he works with the deaf and the hard of hearing in Bartholomew County. I start calling all the numbers and leaving my name and all info regarding Max and wait for them to call me back.

Don't think that I've accepted this and forged forward like an army trooper who knows they are going to conquer. There were some pretty bad days in there where I sobbed and cried and tried to understand what happened and what this all means. Dark thoughts came in to my mind such as what would happen if he was driving and a cop pulled him over, what if he was reaching for a pen and paper and the cop thought he was reaching for a weapon and shot him, how was he going to order food at McDonald's or anywhere else for that matter. I've never seen anyone sign at McDonalds. What about friends? How will he make friends? Max was never going to hear the ocean, or music, which is something I really, really love. I played 6 different instruments when growing up and my husband also is musically inclined. He played the drums in different bands and fiddles with his guitars. MAX WILL NEVER HEAR ME SAY I LOVE HIM. That's what hurt more than anything. My mind would go to those dark rooms and try to explore them and it would leave me so raw and so hurt and so very scared. I couldn't imagine not hearing anything and when my mind would try to explore that area, it was very, very scary. On top of this, we have a daughter who is 5. I feel so useless because I'm so overwhelmed, so upset and trying to work things out and I feel like she is being left out. I've tried to explain Max's deafness to her, but it's hard. It's hard for me to understand so I know it's hard for her to understand. Isn't that the way it is when one has a child with special needs? One gets lost in all the drama, the pain, and all the new appointments with doctors, therapists and specialists. The pain of feeling like you have failed not one, but two children is unbearable.

Jay calls us back and offers to come down and meet with me and help me anyway he can. He comes and brings more information and tries to explain Max's deafness to me, the speech banana and other things about deafness. I'm still overwhelmed so I take in about one-half of what he says.

We finally get Max's hearing aids but not without drama. Of course the audiologist at Riley's made ear molds right after his ABR. She was SUPPOSED to send them right away to the hearing center of my choice, (this was no easy task finding a hearing center that did pediatrics) and she didn't get them there on time. The hearing center, thinking they had called and told me that the appointment had to be cancelled were very surprised when we showed up with Max expecting our hearing aids. When we found out what happened we were devastated. Again. Why? Why did this happen? It was going to be another 2 weeks before we got the aids. We finally get the aids and guess what? The audiologist at Riley's didn't get the mold far enough in the ear canal so they have to make more because those don't work. GRRRRRRR. I'm already upset, in shock and whatever and this is really starting to take a toll. It is October 3 before Max gets both of his hearing aids.

In the meantime, people were being told about Max's deafness. Of course I never said he was deaf. Oh no, that was way too hard to pull out of my mouth. I would say he was hard of hearing. I was still under the belief that Max had moderate to severe loss in one ear and was again under the false assumption that his hearing aids would "fix" everything. We would have our work cut out for us, but they would work. People would react differently, some would apologize like it was their fault and look at us both with pity, yeah I feel it, pity me because I'm lost and I don't know how we'll survive this. Some would say, "There's so much they can do now days". Oh really, because everything I'm reading and what I'm getting is that they can't tell me what caused it, they can't tell me how he will do with hearing aids, they can't tell me if the hearing aids don't work whether the cochlear implant will work, as far as I'm concerned THEY CAN'T TELL ME ANYTHING OR HOW TO FIX THIS!!!!! I think that most people think that because we are advancing in the medical area that there are all these wonderful avenues we can take to "fix" this, but their isn't. If you have some type of medical problem, say for instance your heart, the medical professionals can tell you, "Oh we'll just do an angioplasty, bi-pass, or even yeah we'll get you a new heart and you'll be good as new." But with deafness, those medical professionals can't tell you a thing, other than cross your fingers and hope that something helps. It sucks. More people need to be aware of this and donate for more research regarding hearing loss and deafness.

When Max gets his hearing aids people look at us strangely. Some ask questions, some just stare at him, then at me. It's hard to tell what they're thinking. Sometimes it makes me angry, other times it makes me unbelievably sad. There was a woman one time that said, "can they fix him?" I want to lash out at her, "yeah, they can fix him but I don't want them too, I'm selfish and I want him to be just like he is." Another time Max and I had gone to the BMV. Max was asleep and laying on my shoulder and hearing aids ring if they are close to anything, loudly. One of the women at the BMV was looking right at me and saying, "What's that sound? What is that? Do you hear it?" She kept asking over and over in that "tone" while looking at me. (That tone is the tone that a teacher or parent uses when they know that you have messed up but want you to freaking admit it, so they ask stupidly in "that tone"). I ignored her until it was evident that she was not going to give up and replied, "I'm sorry I can't hear you from this ringing." She then asked if he had hearing aids, "No, he wears these because the President sometimes calls to confer with him on special matters." She knew I was pissed and shut up. Can you HEAR me?

Saturday, March 17, 2007

August 2006 Max IS Deaf

Max is deaf. He's what? Deaf. I don't know what you mean.

We found out that Max, 18 mos., is deaf. How did this happen? He passed his newborn screening, I've got the little paper that says so. How did this happen? We don't know, the doctors don't know, no one knows. We could get genetic testing done, but why? Why put him through that and we're not having anymore kids, FOR SURE, so I guess if it is a big issue with my kids when they get older and start thinking about having kids they can get tested then. I won't do that to them or us right now. It is what it is and there's no changing it even if we have the answers.

We leave Riley's Children's Hospital shocked and befuddled. We were told that he had severe-to-profound loss in his right ear and moderate-to-severe loss in his left ear. I don't know what that means, I will find out (later) but for now I don't know what that means at all. After the audiologist got done with us a doctor came in. He starts Blah, Blah, Blahing says that "20 years ago he would have put his hand on my shoulder and told me he was sorry". What? He said that he wasn't sure if hearing aids were going to work or if the cochlear implant would even work. He does assure me it's not my fault. What? They send us off telling me to let them know which audiologist they are to send the ear molds that they have made to. They don't tell us where to go from here, what to do, nothing. We're lost in deafness. We don't even know what it means. On the way home I make Trent stop so I can pick up a baby book on signs. The journey has begun. Can you hear me?