Filed Under (CMV & Special Needs) by Kel on 13-01-2012

This little boy, I think, is always going to keep us guessing.

The first question may be – what on earth?

John and I have spent a few years, now, trying to figure out just how to parent this child…and many days, I feel like I’m still at a loss. It’s hard to know when to challenge what we know are his abilities and when to cater to what we know are his inabilities. It would be easier, by far, just to write off some things and let the status quo stand, but that’s not what we want for him. Stagnating and not pushing themselves isn’t what we want for any of our children. That being said, we know that Danny, in some areas, is more of a 2 year old than a 3 year old…but the trick is, many of those areas are disappearing. Rapidly. And then you have the areas where he’s more of a 4 year old, or older. (The other day, he read the first 2 sentences of the snowman poem that was sent home for Eric to read as homework. Um, what? “This is snowman happy,” the paper said, so Danny cheerily looked at it and announced, “Ih ish oh-am AH-ee!” And I assure you, it translated much better aloud than in writing.)

I try to meet him at his level, but sometimes that’s so hard to find!

Our latest project, or challenge, is getting Danny away from being locked in his room at night. Now, that sounds pretty terrible, and it’s not something I talk about much – especially online – because I can see the accusations flying. We have had a hook and eye on Danny’s door for quite some time now. Our nightly routine finished with me taking him into his room and giving him a big hug. He would take his CIs off, put them in his box for them, and go lay down happily. I’d wave, close the door, and lock it. Some nights, he might get up and try the door, other nights he would just drift to sleep. If he tried the door and it didn’t open, he’d go lay down and that would be that. It gave him a definable rule that it is Time To Lay Down, and without it, he would decide it is Time To Play and wander the house until midnight.

Now, in about 2 months, we will have a baby. The room Danny was in is also the room the baby will sleep in, and our routine just…wouldn’t work. So we prepared ourselves for a lot of long, long nights.

…and Danny decided he would just lay down on the couch or the futon and go to sleep, and stay there all night long. Well, OK then. Apparently, from the last time we tried (about 6 months ago?), he became ready. Yes, ideally he would be sleeping in a bedroom on a bed, but honestly – who cares? He is in a safe, comfortable spot, sleeping all night long. Eric went through a fairly long phase of sleeping on the couch rather than his bed, and he is just fine.

This is just like most things for Danny. It may be at a different time than other kids, but he figures things out and decides what works best for him. Sometimes, we need to help direct that, because his choices aren’t very appropriate or safe… But often, it works. He’s growing more and more independent about the daily things of life – getting undressed, getting dressed, putting his clothes away in his hamper once he’s worn them, putting his shoes on. He’s full capable, and sometimes I find myself having to step back and remind myself of that. Because he passed the “typical” time to dress himself, I just got in the habit of always doing it for him. Why? Because it was easy. But parenting and easy don’t go hand in hand, so little by little I keep forcing him to work on it himself. If he’s struggling and getting too frustrated, I help, and I try again a little later. He gets there in time.

The biggest difficulty is remembering that just because he doesn’t talk doesn’t mean he doesn’t understand. That’s an easy one to fall into as well. Whether it’s autism, speech apraxia, or who knows what else he’ll eventually be diagnosed with, as much as he wants to talk and tries to talk, it just doesn’t work so well. He is really trying, though, very hard! We are developing our own language in this house, because he says a lot lately, it’s just nothing anyone outside Danny’s circle would understand. “Oh Ah-were. Ehhhhhhh OUK!” (“No water. I want milk!”) “Ah uh ow-aye. Ih-aye! Ehhhh ah-oo-air!” (All done outside. Inside! I want computer!”)

Unfortunately, I can see this being his biggest life-long challenge. And after reading this article, it reminds me all the more of how and who he is, who he could become, and that I will always have to work to remember that even when the rest of the world doesn’t.

There is a lot of personality in there, and one fabulous little dude who wants very much to get it out. He has so much to offer. I hope that, the more awareness is raised of people like him who are “trapped in their shells” so to speak, he will be accepted and embraced. He is so happy, and I want him to stay that way.




Jen C. on 13 January, 2012 at 12:43 pm #

Beautiful post! Enjoy your last weeks of pregnancy!

David on 13 January, 2012 at 5:21 pm #

I tried unsuccessfully to search your blog to see if you’ve previously answered this question:

Is there a reason you are not signing with your son?

If Danny does not have a neuromuscular or cognitive deficit, he could be telling you what he’s thinking in a standard language. (Maybe you have seen the YouTube video of the 2-year-old conversing with her mother in BSL. This level of fluency is normal in signing families)

If someone has told you that signing will interfere with speech, well, most charitable thing I can say is that whoever told you that is misinformed. Sign language provides earlier access to language. Language competence *supports* speech.


maurene on 13 January, 2012 at 6:39 pm #

Great post kelly, I must admit I was intimated to start with over Christmas just because I wasn’t sure what Danny was trying to express but I soon figured out that he would get the message across just fine. He amazes me!!!

Kel on 14 January, 2012 at 7:47 am #

David, I appreciate the question.

I introduced sign with Danny as a baby and continued for a few years, and the team at the preschool he now attends also use sign – including one-on-one signing with him in therapy sessions. No one has had success getting him to even attempt to sign. He did pick up the sign for “more” for a while, though it was just him clapping his hands together, but even with reinforcement and us using the sign with increased frequency, he quickly dropped it.

Along with his deafness and neurological whatever-it-is (the undiagnosed autism/apraxia/whatever), he also has low muscle tone and poor fine motor control. His ability to mimic hand motions (signing or finger play) has never been strong. It also started out delayed, as he was born with a global muscular weakness on his left side that we suspect was neuromuscular – left eye was weak and would drift a little, left foot needed more support and bracing than the right, left arm he completely ignored and did not use until he’d had a good 9 months of OT.

So basically, the reason I’m not signing (more) with my son is that he shows no interest or competence in it despite years of exposure and attempts. When we initially learned that Danny was deaf, my hope for him was that he would be bilingual – speech AND fluent signing – and I plan to sign with this baby, because I absolutely agree that signing and language support speech.

David on 14 January, 2012 at 9:44 am #

Thank you for explaining, that makes things much clearer. I was hoping that my brevity would not come across as confrontation.

I suspected that you’d covered this, but I could not backtrack in your blog as in some others. The one mention in “Danny’s Journey” didn’t clarify either.

I understand that the muscle tone and weakness issues can really impact expressive signed language. I encourage you to continue with signed language as well as spoken, since it is possible that Danny’s expressive abilities might move at varying paces for sign versus speech.


Kel on 14 January, 2012 at 11:59 am #

I do plan to, David, so he’s got all the options on hand (no pun intended!) at all times. Plus, since I do plan to sign with the baby, there may be some spill over and extra interest when he sees his brother trying it out and having success… Who knows! :)

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