Friday, January 8, 2010

Normal Expectations

A few posts ago I mentioned that AJ's teacher wanted to explore a specific curriculum for AJ. The curriculum is called Every Move Counts. The entire school team that works with AJ met with another district EI teacher who uses the curriculum to discuss the program, the assessment,what it includes, and AJ (of course) this past Tuesday. It was, apparently, a very productive meeting.

The first part is to conduct a video assessment of AJ. It will be a 30 minute assessment where they take him through multiple sensory experiences. The assessment will be on Monday. The team will review the video that afternoon after school, and the following Monday we will watch the video along with AJ's team here at our home during our monthly home visit. We are anxious to see what this assessment will show not only us, but AJ's school team. While I know I don't need to say it, I am thankful every day for AJ's school, his program, and his team. They continually go above and beyond to help my son. That is priceless.

This curriculum was suggested since AJ is making gains in every area except communication.

This fact is literally, breaking my heart.

I find such odd parallels in AJ's adoption journey and AJ's cochlear implant journey. We spent so much time defending the Guatemalan adoption process, defending his small size, so much time creating a pretty, happy story. So much time explaining facts and how it would be when he came home. Giving rules and sharing normal expectations.

When we were anxiously awaiting AJ's CI surgery, we spent months defending our decision, trying to explain how a cochlear implant works. Giving repititive corrections about when he would hear and how he would hear. Providing a "loose" timeline of when he would start understanding speech, making sounds, and hopefully talking. So much time creating a pretty, happy story. Giving rules and sharing normal expectations.

I think its safe to say that Jeremy and I are no longer allowed to have normal expectations.

While we never thought his cochlear implant was a "fix", we certainly had what we thought were very realistic expectations. AJ is a smart little boy. So why isn't he making sounds or babbling yet? Note: I'm not saying we think he should be saying 4 word sentences. This is a realistic question. At this point, 8 months post-activation, we should be seeing more. His auditory gains are pretty much on point, but whats with the lack of communication? There is no verbal, no signing, really. AJ's preschool program allows us to be around a lot of other kiddos with CIs (and HAs), which is wonderful. I smile each time I see the older grade schoolers running to the office in the morning, some with CIs or HAs and some with neither, and its just the norm. But it also shows me just how far behind AJ is. Its like his class is running through a jungle, some fast, some slow, and AJ's stuck in the quicksand.

At the back of my head is this stupid chromo testing. I called the insurance verifier at the Child Development Center to see if she had heard anything. Turns out we have the one of the slowest insurances to respond. Fantastic. I was told that T19 will pay for it, but we need the approval or denial from our primary first. Sound familiar?

What if there is something else going on? Maybe his brain is not functioning correctly. I hate to say it, but there it is. Are some receptors not working? While I know the past is impossible to change, all of this had made me yearn for a different experience. FOR AJ, not for me. I wish we could have been there from the beginning, right after his birth. Spoke to his birthmom about her pregnancy. Spoke to the doctors after he transferred to the hospital. Been with him in the NICU. We'd know what happened. It frustrated me to no end that we don't know. What happened while you were in Guatemala? A question that will remain unanswered.

AJ's activation came at an odd time. He phased out of Birth to 3 just 2 months after activation. He had less speech therapy than I would have liked. Why didn't I realize this then? Should we have dropped the sign? All this time and he only has one sign does consistently. Sure we've gotten others, but not they are not consistent. signing now? Should we not focus on signing so much? Is it motor or cognitive? What he understands auditorily is passing up the signs he knows. Sometimes he has difficulty using his vision to pay attention to a task, etc. Should I have him in private therapy outside of school. What can we do different? WHAT AM I MISSING? Pardon my babbling. It helps when its not all in my head.

No one wants to hear that their child is not doing something. Communication is essential to life. Communication is critical. This is a big issue, this isn't "Johnny doesn't like to share." I'm terrified about all of this. Yes, Mel, I used that word. I really am. I don't have the answers, and that frustrates the *#@( out of me.


  1. Sending you strong, positive vibes, as I know that you have A LOT on your plate, a lot more than any of us blogger mommies really understand. It sounds like you have a great team working for AJ and maybe this new program will be exactly what he needs. You are an amazing mom, and you are doing EVERYTHING in your power that you can possibly do. AJ is so very lucky to have you. *hugs*

  2. Keep on keeping on. You are an awesome advocate and AJ is a very special little boy. Don't look back, look forward. And don't put yourself through the "wouda-coulda" game. xoxoxo

  3. Ditto Jennifer and Tina.

    I have nothing new to tell you and in a way I shared your frustration, but not exactly. I wish I had something magical to say to make it all better! Know that AJ is working with the BEST team around and they are just as committed to him as you are. You are doing what you can- always trust your GUT.



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