I have to say, after spending 4 days at the Moog Center, the workshop was everything and nothing like I expected it to be. It was certainly a well spent and worthwhile 4 days for the most part, and I’d highly recommend the workshop to anyone who is receiving limited services for their oral-deaf child right now.

I’m not sure what I was expecting going into it. I’d heard that it was great. I’d heard one family tell me that the 4 days there made the difference for their child to start speaking, though I knew better than to expect the same for Danny. I’d heard that it was chock full of fabulous information. Day 1 was a bit of a let down as a result, because it was, well, day 1: covering the basics. Living where we live, receiving the services we have since we found out Danny was deaf, it was basically a whole lot of recap for us. It was good reinforcement that we knew what we needed to know, and it was nice to meet other families with hearing impaired kids, but the solid take away didn’t really start on the first day for us.

Day 2 is when things shifted. We started to learn new things. We started to be able to compare the Moog Center with CID (through whom we get our services). It was great – and yet, the emotional aspect of the workshop hit with full force on day 2 as well. We went over the “typical” development of children with cochlear implants after their activation, and we also got to sit and talk one-on-one with the therapist who was working with Danny while we were there.

The day ended in tears for me. We’ve had a vague awareness for a while now that Danny isn’t going as quickly as other bilateral kids, but I don’t think we ever realized just how slowly he’s going, how much cause for concern there is right now in his lack of progress. Now, I want to make it very clear – the people conducting the workshop were not the ones scaring us. The therapist was honest but not blunt, not fear-mongering. However, neither John nor I are stupid people… I’d go so far as to say we’re relatively astute. It was an unavoidable truth, our elephant in the room. They also made sure we were aware of his other issues, in case no one had discovered them yet: the fact that he doesn’t walk great for his age, the fact that he doesn’t use his left hand like he should. Yes yes, we know. We know all too well.

I went to bed that night not wanting to go back.

Day 3 we learned more, and the therapist was pleased to tell us that Danny was picking up on things fairly quickly. Now, she is no miracle worker, but if there is one bit of hope that I’ve taken from the whole workshop, it’s that he can learn. Of course, being a therapist, she was unwilling to commit to anything, and gave the same wishy-washy responses that had made me want to punch so many people over the past years: she has no crystal ball, you just have to wait and see, by Christmas if he’s not made much progress you can look at things again and consider your options.

I swear that I would pay every dime I have to have someone who is a therapist, who has seen countless hearing impaired kids in countless circumstances, just tell me what their gut feeling is about Danny. Is it the lack of therapy and time we’re able to properly commit that’s holding him back, or is there some neurological something involved? Any time I alluded to the fact that his picking up on receptive things for her quickly meant that it could just be a lack of therapy, she would hem and haw. Maybe that’s what therapists are supposed to do. Maybe it’s the same covering-their-bum tactic that doctors do. But when a parent says, “I think that’s a great sign, and with more dedication and time in a toddler class, he’ll do great,” and a therapist says, “Well, just go ahead and do that and see what happens,” it’s like they’re putting up a huge neon sign for the parents:

“Good luck with that. Your child is terribly disabled, but since you’re so hopeful, I’m not going to shoot you down… I’ll let Danny do that himself.”

Thus the desire to punch something.

In the afternoon of day 3, there was a panel we all got to participate in. Three families with older kids that had gone to Moog came in to sit and talk with us, one parent and one child from each. The kids were 7-12 years old, all with at least one cochlear implant. John took a lot of hope from it and came away feeling somewhat better. I had to step out a few times to keep myself from crying. I’ve got issues, and I know this… One of the biggest is the fear to hope that Danny can get there. It’s not that I don’t believe he can, but I’m equally optimistic and terrified that the other shoe is going to drop like I’ve been waiting for all this time. That damn CMV Boogeyman whispers in my ear, They are different. They are normal. Danny is not, and he will never be.

I am so ready to be free of that voice.

And then it was day 4, the half day, and we were done. I think I went through an entire grief cycle just over the course of the workshop, but in the end I left feeling hopeful again. We got to watch another family work and be coached through a language learning opportunity with their son, and then had our turn while they watched. It was simultaneously great to see another child acting much like Danny is – the stubbornness, the refusal to play along, the same level of language – and difficult to watch at he pointed and made clear, obvious gestures that Danny doesn’t make. Danny gets his point across with gestures, but they’re still more abstract, tapping things with his whole hand, pointing/reaching with his whole hand, nothing clear like him pointing at me and then pointing into a cup to say, “put the dang juice in here, mommy!”

I pushed past that particular reminder that nothing is normal when it comes to Danny. He’s doing well. He is.

I think the hardest part of it all, really, was walking out and having to go back to work the next day. I am ready to be at home with him. I am ready to have him attend CID’s toddler class. I am ready to spend the other mornings working with him one-on-one, no distractions, no older brother trying to take over every activity I do. I am ready to give him the tools he needs. I don’t say it to be guilty or a martyr, but honestly, we haven’t done what we need to do for him up to this point. We try, we have the best intentions, but the circumstances just aren’t right. I’ve felt that way for a long time and had people assure me I’m just worrying too much…but it’s clearly true, and I do have faith that with more Danny will start making the progress we desperately want to see.

I’m finally allowing myself to be a little excited, and a little hopeful, for all the things we’ll see once August comes around. I’m scared – oh, I am scared! I’m scared I won’t be enough, I won’t do it right, I won’t be able to help him. I’m scared there really is something underlying that’s preventing him from achieving the same level more typical CI kids do. Until proven otherwise, though, I just have to believe that with more time and attention and effort, he’ll finally start to get it, and he’ll be on his way.

The last thing I took away from the workshop is a solid reinforcement of how luck we are to be in St. Louis. Listening to what all the other families were receiving and were having to do to receive services for their kids…we are so lucky. We don’t have to drive 3 hours one way for audiology or therapy…we don’t have to fight tooth and nail to get someone to pay for it…we don’t have to wonder about what to do for schooling because the only class available is nothing that they need. We don’t have to consider splitting up our family, one of us living with Eric and working, the other one living across the country for Danny to attend a school that caters to his needs.

We are truly blessed in our circumstances.

Now if only Danny’s progress would reflect that.