Monday, February 1, 2010

Realizations

I've told myself before even starting this post, I need to be brutally honest with myself. Sometimes the truth hurts and sometimes it's just a good eye opener to reality.

The day we fitted Aiden for hearing aids, they told us not to expect much from him in the means of seeing reactions - he had a profound loss, he was DEAF and they probably wouldn't do much. It tore me up inside. I wanted my baby to hear my voice NOW not later. I refused to believe them and I fed my child every ounce of language and all the listening opportunities I could. I became a walking auditory verbal model. I put his hearing aids on when he woke up and took them off when he slept; and after a month or so of still not seeing a reaction, I didn't quit. At Aiden's first soundbooth, post hearing aids, he tested around 80db across frequencies. By the time he was 9 months old, they questioned holding off on his simultaneous CI surgery as he was testing up to 50 db across frequencies. HE LOVES TO LISTEN.

Before Aiden's CI surgery, I set up a schedule with our audiologist for Aiden's multitude of mapping appointments. I wanted both ears to be activated at once, she did not feel comfortable with that want. In fact, there was a seven week gap between activations. Our audiologist provided a good explanation of how she wanted to be conservative and make sure Aiden adjusted to his first "new ear" before mapping the second. I took a deep breath and trusted her. After his first two mapping appointments, within the week, Aiden tested at 25 db across frequencies and we moved up the second ear activation by over four weeks. HE LOVES TO LISTEN.

In therapy, I was told not to get too excited in the beginning as it would take quite some time to see results. "His ears are like a newborns."; "He's only one month hearing."; "Give him time." Within a month he was turning to his name. After two months of bilateral listening, Aiden was saying, "mama", repeating two of the Lings, understanding the word "no". HE LOVES TO LISTEN.

Throughout much of our journey, Aiden has been a rockstar; awing his team of professionals and showing them just how much he truly does love to listen.

That's why it has been SO HARD the last four or five months seeing my boy go from leaps and bounds to an almost complete standstill.

I've said it before, but I'll say it again, they say you shouldn't compare your child to others, but, oh well. We all do it. I saw how other munchkins activated around the same time as him were really starting to talk. I took it with as much ease as a mom who's main agenda is to get her deaf baby to talk, can. The worry grew as I saw my baby not only NOT talk, but lose some of the few words he had. Even scarier though was that the only lings Aiden used in babble was the ah and m ... no ee, oo (I was okay with no s, or sh, as these are high frequency sounds and typically come later). And we were 7 months past his first ear activation.

Fast forward to November and Aiden's speech evaluation at his school. At this point he is 8 months post activation and receptively tested at five months! I drove home in tears. Aiden's audi came back from maternity soon after and between her and Aiden's school, we found out his map was VERY off. We also found out that he had some sensory integration issues and additional OT issues. I felt like I was going to break down. I had worked so hard since this little man was brought into my world and I didn't know what else I had in me. I felt we were back at square one.

We're now in February - almost 11 months post activation of the first ear and we have about 12 words consistently used in context; only have the /ah/ and /m/ for lings (although for a whole two weeks he walked around saying "sh", but "sh" has since disappeared); he still does this horrible nasally deep breath like he's gasping for air sound (yet, not near as much as he used to); and he still isn't bee-bopping to music like I thought he would by now. Receptively though, he's rocking right along. Yet I still CONSTANTLY WORRY. I think I always will.

Since our move to Ohio from Maryland, we've met with our new AVT and today we met our new audiologist. Both, highly recommended professionals in their league. Both told me the same thing our wonderful audiologist back at Hopkins said,

"He's responding to all the lings at good levels across all frequencies, he shows he understands receptively, he's only 10 months "hearing", he has a wonderful personality, no he doesn't have much of a vocabulary, BUT I'm not worried about him because I can tell ... HE LOVES TO LISTEN!"

Since I have left Maryland, and after hearing our new team's assessments of Aiden, I have made some HUGE realizations:

I really need to take a step back and READJUST ... not my expectations, because I will always carry high expectations for all of my kids ... but my FAITH - in myself and what I do not only as Aiden's teacher, but as his MOTHER.

To start thinking first in terms of how far he's come - of the POSITIVES; and not of what he's lacking.

Aiden's world doesn't have to be all about therapy all.of.the.time. Yes, we make each moment a teachable one as much as possible, but it's okay to LET IT GO now and then ... in fact, I'm finding out it's quite healthy.

Each kid is their own kid and will perform when they are ready to perform. I can't compare. Aiden is Aiden. He will do his thing when HE is ready.

Remember that everyday this boy makes me smile, makes me laugh, and there's not a day that goes by that I'm not SIMPLY.AMAZED.

My son IS A ROCKSTAR. He may not have a vocabulary that I WANT HIM TO HAVE yet, but he's doing such a phenomenal job listening! What more could I ask for from my DEAF CHILD?

He will dance when he wants to dance. And I will.not.stop playing music videos, dancing, and singing my heart out to him.

He will say some form of "shoe" (instead of grunt) when he's ready to say "shoe" and by golly, after all the silly monkey sounds, tapping on my "tEEEEEth" and "bEEp-bEEps" I've done, one day he'll screech out that "EE".

He will SAY some form of his brother and sister's name because I will continue to repeat it over and over and over again until he does.

He will get the /p/ and the /oo/ and the /ee/ and put them all together yelling "POOPEE" throughout the store at the top of his lungs ... and as he does, I'll just laugh, knowing I worked on all three of those damn sounds since the summer of 2009!

One day, it will all come together, and when he's ready, he will explode, because my boy truly does,

LOVE TO LISTEN.

13 comments:

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Kel said...

Oh hon, lots of hugs to you. You are so right that he is a rockstar and you can't compare! I swear I need to print this out and put it on my fridge... Danny isn't even doing anywhere near as well as Aiden is, and with his first hearing birthday 2 weeks away I swear I am going crazy with worry and, quite honestly, disappointment that he isn't one of the kids saying 1 word, let alone 10 or 100. In the end, though, they'll ALL get there, right? And that's what matters.

Melanie said...

Been there, Tammy! The bad MAP, the comparisons, all of it.

Keep repeating the positives in your head- even if you feel different that day.

leah said...

You are such a good mom. And Aiden is going to take off again- sometimes I think those developmental plateaus are the hardest. There have been a lot of hurdles to overcome recently- that bad MAP probably took a bit of time away from his "hearing age.He WILL dance to music. He WILL yell "poopie" in the grocery store and cause old ladies look at you with scorn, he WILL succeed.

Mom to Jiya said...

Aiden is definitely a star kid...Jiya is not doing as well as he was at that stage...but he definitely gives us a lot of hope...keep it up aiden

Herding Grasshoppers said...

Tammy... you're awesome. I think we all have to "preach" to ourselves, over and over - to remind ourselves to celebrate what's good. We moms just beat ourselves up.

We worry. At least, I know I do. I have the amazing ability to take any little perceived problem and extrapolate it out 20 years and turn it into a crisis. *sigh*

You've already said it better than I ever could... Aiden will soar :D And we can all celebrate each other's progress along the way.

Julie

Herding Grasshoppers said...

BTW, I didn't mean to imply that hearing loss, or sensory integration are just "little perceived problems"... I just meant ... oh crud, that things aren't always as bad as they feel, and that I believe you and Aiden will overcome.

Julie

Naomi said...

wow, I could have written that post. It is EXACTLY how I am feeling. In fact I was just researching a school which is 1 1/2 hours away from here to see if it might help. I think worrying about our kids is something that Mums do too naturally. Thanks for the reminder that we need to stop worrying so much. I want to enjoy my little girl and not spend all of her early years stressing about what she isn't saying.

Lily's Mom said...

We all worry and we always will. It's what mothers do. I hope things are getting off to a great start here is Ohio.

tammy said...

Julie, you make me laugh! I didn't think anything of it, but thanks for the second comment! ; )

and yes, I am a huge worrier and over analyzer, but it's getting better with age! :)

Kat said...

Girl, you inspire me with every post! Aiden is a rockstar in every way...one that will try your patience and turn your hair grey, but he does rock! Keep in mind something that Becky always says to me, "the first year post activation is a hearing year...give him time."

I have a few things that I need to mail you. So email me your new address and I'll send you a package.

Also I saw your comment on my blog and I wanted to let you know that I got the chipper chat from super duper Inc. Pretty cool site!

We seriously need to schedule a call and wine drinking night...you always make me feel so empowered and strong when we chat! Lots of love!

Rhonda said...

Hi. I just clicked here from cicircle. Very nice summation of feelings. Just so you know though, it is possible to not worry at some point. Or, I should say, to not worry about the things you're worrying about right now. There's always worries, deaf child or not. But when I think back to a time when I TRULY didn't trust that Neal would ever hear a thing, even with his ci and compare it to now, it's amazing. His speech and language aren't a concern at all anymore. There are behavioral/social issues for him, and there are things like hearing in noise to contend with, but the worry about whether he would ever hear or have clear speech is a very distant memory now.

Cloggy said...

... we all get to the phase where we say "Now, shut up.."
One of those wonderful milestones...

It will take a while... but you'll get there...

http://lotte-sofie.blogspot.com/2008/06/another-milestone.html