As I begin this post, I have no idea what I'm truly going to write. I have so many things going through my mind...
I thought that Thomas' new map from earlier this week was going to be the silver bullet. The one thing that would lead Thomas to speak to me. Well, I find myself even more frustrated than before. The first couple of days following the the revision to his map, Thomas was babbling and more engaged with things going on around him. He was open-mouthed talking more than ever. Sean and I were thrilled.
Friday dawned with a quiet Thomas and an absolutely horrible AVT session with Ms. Becky. It was not horrible because of Becky, true to Becky's form she had an entire session filled with great "fun-work" for Thomas...it was horrible because we didn't get much verbalization out of Thomas at all. In fact, I broke down in tears during the session. I cried all the way home in the car and for hours after the session. I find myself tearing up even now because of where Thomas is in his development. I hate to admit that he is not where I expected him to be 4 months post-activation with a relatively good hearing ear on his left side. I expected him to grasp this new technology and run with it. I expected him to do a new Texas Two-Step dance and amaze us all with the two steps forward, two steps forward, two steps forward approach. Instead, I find us taking two steps forward and then two steps back.
With his diagnosis, it leads me to wonder if he has had two bad hearing days in his left ear. And maybe with changing his CI map, it isn't enough to manage a bad hearing day because he isn't getting enough from his HA ear. For the first time since detection of hearing loss, I'm wondering if I should be taking a total communication approach with Thomas -- this is a very, very hard thing for me to actually write.
More than anything, the point that is sticking out at the forefront of my mind is: I'm failing my son. I don't know what is wrong...what am I not doing for him...have I not done all the research that I should...does he have another issue going on that we have not yet discovered...
So rather than bitching and moaning even more because I'm starting to really cry now, here are the things that I'm considering doing:
1. Sean has agreed to take Thomas to a kinder music class on the weekends if I can find one appropriate for Thomas. Also, I'm thinking about giving Sean more responsibility when it comes to therapy with Thomas. Should the weekends be Dad's time to do therapy with Thomas? Would he be willing to do things for Sean that he won't do during the normal week? Hell, I don't know, but feel it is worth a shot.
2. I'm investigating getting Thomas into a preschool class with hearing children. Even if it is only one day a week and three hours and even if I have to be with him the entire time because he is a "special needs" child. Thomas will typically do things for his sister that he won't do for me. So, it leads me to wonder if Thomas doesn't need to see other children his own age talking and making verbal requests.
3. I'm thinking about asking his audiologist for a "bad hearing day" program for his HA ear. I thinking that I should be LING checking Thomas before any technology goes on his ears to see where he is that day. If I don't get the responses in the high frequencies, I'm thinking that I should put the "bad day" setting on his HA ear.
4. I'm going to order a teacher's lesson plan book. With all of the objectives that Thomas gets each week, I'm feeling overwhelmed. So, mapping out the entire week at one time could help me engage him more and keep me more organized. Then I can make notes in the lesson book and take to each of his various therapy sessions.
One final note -- if you've made it this far in my post...I have discovered the website: http://www.childrenspublishing.com I have ordered some of the interactive books and the "plain talkin'" CD to try with Thomas.
Maybe with all of these things, I can get Thomas to make his own Texas Two-Step that is more movement forward and less movement backwards.
Ushers ... a New Journey
4 years ago
First, put your arms out, now wrap them around yourself ... that is me giving you a HUGE hug! You and I are so much alike (and so are our boys). We are our son's best therapists, we make every moment a teachable one, we worry, we stress, we cry, and all because we're not getting the results we're used to getting being the hard workers, always give 150% type of people we are. But this is different. OUr boys are a completely different "task" and we'll see the success, it just not be immediate like we're used to.
ReplyDeleteStep back. Thomas has been hearing with his CI ear for only four months now. You work with him day in and day out - you're doing what you need to do and much, much more - at home and with his phenomenal team. I think it's a great idea to get daddy involved on the weekends, I need to let some of it go too and just had the "talk" with my family that I CANNOT be his only therapist - we ALL need to help in hear and speak. It's so overwhelming and if you feel like I do, that it's all on our shoulders. Not a good burden to carry.
Again, I could've written this post. Our boys must have been separated at birth. We've had Aiden's maps adjusted two times now in the last six weeks and still nothing except more high pitched gasping for air type noises. Still no /oo/ or /ee/, still no /sh/ or /s/. All we STILL get are the same ol' consonants and same ol' vowels. His soundbooth looks better, but he's still just not getting it. I just can't help but think it has to do with his oral motor and some sensory integration (can't sit still/focus long enough to learn) issues. I need to get that book you recommended. And I've thought the SAME.EXACT.THOUGHTS as you have re: the whole TC approach. In fact, I'm truly thinking of using a little cueing to hopefully boost some of his speech. I've just heard many stories where it really helps. But then I feel bad even thinking of going this route. UGH!
I think a teachers planner is an excellent idea. I'll have to look some good ones up, if you find one, let me know. I also use a whiteboard calendar (that just has one week on it) so everyone can see what we're working on and it can become a discussion tool with Aiden too as he gets a little older. I also know a mom who works FT and put her son (w/ bilateral CIs) into a preschool, but found one with a very small teacher:student ratio (6 kids in the class). Her son did VERY well (and without her there). Now at 3, he goes to an oral program school (the same one Aiden will go to in Columbus). I'd definitely check it out Kat. That's the one thing I'm going to miss leaving hear, is Aiden's "play time" away from me. It'd be a good break for you too.
I'm rambling on and on! I should've emailed you. lol. Call me today if you get a chance. Keep your amazing faith, because no matter what we do, HE is ultimately "in charge" and will provide. Love you girl!