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.
Because I have to do it all the time.
I’m very much a “follow their lead” kind of parent. I don’t go to extremes – my children have limits, boundaries, rules, etc – but when they were babies I learned that everyone is happier if I pick up their cues and anticipate their needs. This worked great for Eric, and for baby-Danny as well.
However, as a mother to a speech-delayed child, for whatever reason, that’s a terrible thing to do. Instead of “anticipate” and “provide,” words like “sabotage” and “withhold” need to be slipping into my vocabulary. I’ll admit: it’s hard. After 2 and a half years of learning that tantrums and bad times are avoided by thinking ahead, I had to make a mental switch. I’m still working on it.
For example? Danny goes to the fridge. “Oh-eh!” he says, holding the fridge door and looking at me expectantly to make sure I’ve got his message. Open. Got it. I open it, and he taps the gallon of milk inside. Yep yep yep, he’s thirsty. I pull it out and pour a cup, talking about what I’m doing the whole way, and then he raises his hands for the cup.
“What do you want, Danny?” I ask him, and he gives me this exasperated look like, Jeez, lady, you haven’t figured it out yet? He raises onto his toes and I nudge the cup away. Away? What? That’s not right, a voice in my head exclaims!
“Oh, you want this milk, Danny? Mmmmmmilk?”
“Mm!” he agrees, finally making a verbal pronouncement of it. But, that’s not enough anymore. After the child has shown he is capable of saying “mowk” for milk and “moa” for more (an accomplishment he did at daycare yesterday that had his speech therapist calling me in her excitement, and me crying at my desk at work), I can’t settle for a simple /m/ sound anymore.
“Yes, milk! This is the milk you want, right Danny?”
At this point, it becomes a struggle, something I’ve spent years trying to avoid by anticipating my children’s needs and going with their flow. Yeah, I’m probably a big reason why Danny isn’t saying a bazillion words yet like all his other online CI buddies. But I work on it. A lot. If I don’t give him reasons to use his words, and adequate time to do so, it will never be worth it to him to put in the effort.
That’s what I think at least. What I hope. What I cling to when he takes forever to respond and the CMV Boogeyman is whispering in my ear, He can’t talk, you fool – I made sure of it!
“Mmm… Owk! Owk!”
“Oh! All right, Danny, here’s your milk!”
So what does it mean when I go to the door at daycare to leave, and my younger son pipes up and says, “oh-en?”
I’m pretty sure it means that I am supposed to start crying. Or cheering. Or cheering while I cry. For weeks now, before opening the car door or daycare door, I’ve been encouraging him to say “open.” He’s mimicked it before, a lot, but to say it on his own?
I’m going to have to work with him on other instances of “open” to make sure he understands the concept, but hell, that’s kind of like 2 words in one week. I don’t expect this pace to keep up, but the child is finally wanting to talk – at least a little.
Now, Alex, I’d like to buy a
vowel consonant…because if anything could make me feel even better than I do right now, it would be for him to use more than vowel sounds to form a word.
My deaf son is learning to talk, and it’s the most awesome thing ever.
I always told myself, I wouldn’t call it a first word until I knew it was HIS word – not him echoing something back, even if he only did it in the “right” circumstances. It had to be clear, and obvious. Definite.
Sitting in his high chair, Danny was playing with his empty plate, something he often does. Over the edge it spilled, clattering to the floor. He peered over at it. I gasped and gave him a shocked look, not saying a thing.
He met my gaze and said, “uh oh!”
I haven’t said uh oh all day. It may have been days. Danny’s said it plenty today though, whenever he drops something on the floor.
I’m resisting the urge to start dropping things myself.
That’s my goal: first word. Danny is doing a lot of mimicking these days in his vocal play; if we say something, he’ll echo back the vowel sounds. Usually he won’t include any consonants, those are still quite elusive, but he’s getting the idea of communication more and more! With our IFSP review coming up at the end of the month, we’re in evaluation season around here, and a recent evaluation placed Danny’s expressive language at 1 year 9 months.
I’d like to say I questioned it, but honestly, I dismissed it out of hand! How could a child with zero words be 21 months expressively? She looked over the sheet again and confirmed that it was right, too… Danny uses vocalizations and gestures to get what he wants a lot of the time. Not always, but often. So, because he has the concept of expressive communication, even though he doesn’t have the words, he scores high. The catch is that his receptive is right where we would expect it: 12 months, right in line with his hearing age. Now, kids will only speak words once they understand them, and the “benchmark” is understanding around 50 words before they say 10. To my count (I’ve been keeping track the past few weeks), Danny has about 20 receptive words or phrases that he understands, some of them in the context of songs rather than words.
No wonder he’s not spitting out words yet! He does show increased and new comprehension all the time though: he’s just learned “give me five,” and the other day when he was playing I said it was time to get some milk, and he immediately dropped what he was doing and bolted to the fridge.
But the best thing I’ve seen from Danny lately, the one that brought tears to my eyes, happened this morning in bed.
I went in to find Eric dancing outside the crib and Danny trying to hitch a leg over the rail. He can’t quite do it yet, but he tries awful hard, and I stood there and let him since I figure I’d rather he accomplish it the first time with me standing right there. Eventually he decided it couldn’t be done and dropped to his knees in defeat. With a smile, I offered my hands to him, our unspoken (since he can’t hear) sign for “come here kid, let me get you out of there.” He jumped back to his feet, raised his arms, opened his mouth, closed it, and then announced, “uh … peu!”
…Did my deaf child just say he wanted up?
It could have been fully coincidence, and I’m not going to call it until he does it again, but it wasn’t a usual babble of “uh uh uh” or “oo ah ah.” Up has two syllables at our house too, the “uh” which Danny is good at mimicking at the “puh” stress so he notices (and eventually emulates) the consonant on the back end. So, it’s possible.
Even if it was strictly coincidental, however, there is still something amazing here: without any verbal cues to mimic, and without any sound input at all yet, Danny chose to vocalize to request what he wanted. He wanted something, remembered that vocalizing is an effective way to communicate, and used his voice instead of gestures to request it even though I had just used a gesture myself.
Progress. Wonderful, fabulous progress. I got him out, let the boys run off to play, and disappeared for a minute to pull myself back together.
As Danny grows more independent, I’m giving him a little more time to play while…not quite supervised. I’m close, but I’m not right on top of him close like I felt the need to be for basically 2 years. This new found freedom is allowing some excellent brotherly bonding.
Eric had half a banana left, and Danny had none. Eric noticed, and he wanted to share with Danny. Over he rushes.
“Hey, Danny! Do you want a banana?”
He holds the banana up so Danny can see it.
“Banana! Do you want some banana? Yum yum!”
He pauses, staring at Danny for a moment.
“Say ‘banana,’ Danny, and you can have some!”
…Yeah, it’s pretty easy to tell we’ve been living the speech lifestyle for a while now.