J-Bear and Me

learning to navigate the world, j-bear style

Tag: non verbal

But He Talks!

J has a whole lot of words. He learns words by the day, gaining a few here and there in this wonderful effort towards grasping the art of communication. He describes things, he makes curious questions, he even has exclamations that crack me up.

This leaves us in a strange situation.

See, I frequently have to defend the fact that when I describe him, I use the term “nonverbal”. Now, I can understand why some of the static occurs. It’s a misleading term. People confuse “nonverbal” with “mute”.  Nonverbal means “not using words and terms for speech”, which leads to quite a grey area when it comes to J. He has words. However, a lot of those words are not functional.

Conversations with J are very simple. They are not detailed, they are not nuanced. Granted, I am not expecting to discuss the finer points of Plato with my 4-year-old, but we do not get beyond the level of perhaps a 2.5 year old with his speech some days. Other days, we get fantastic statements and great phrases, but they are simple. He is very simple, and very direct, with his words. He does not understand concepts like “hungry”, “thirsty”, “wet”, “dry” but he understands “cereal”, “milk”, and “water”. It has to be concrete and visual to be quickly understood or it is lost.

This is just how it is, and you know… It’s okay. We figure it out, but it’s why he will continue to be noted as nonverbal for the sake of those just meeting him. His language skills when reaching out and interacting to the world outside his closest people is severely limited but he can, and will, try when he is ready and willing to do so.

Also, if you happen to meet him, he’s highly likely to greet you with “no”. Not “hi”. No. Or “not yet”. That’s his way of letting you know that he recognizes you’re there, but he’s not quite sorted you into his world view. He’s working on it, and when he’s ready and got things adequately settled he returns to you in his own way. He is always encouraged to say hello, to be friendly, but I will never force him into niceties he is not yet ready for. We just have to find a more constructive way for him to do this than saying “no”.

Funny, I just wrote all these words about J and his relationship with verbal communication and I have to laugh. He rarely remembers names for people, or even cares much for them, but Nonie Dog, she has a name. Always a name. I think this name will stick for whoever our dog shall be just because his little voice is so sweet and adorable when he says it, as though he is laughing as he says it. I love it.

Conversations

I keep going to start a post with the phrase “So I was having a conversation with my son…” when I stopped and realized that, hello, that phrase deserves a post in and of itself.

One year ago, words here and there accompanied by sign was where we were at. This wasn’t a terrible place, but it was a challenging place. His world was so closed off that letting people who did not doggedly spend hours with him get more than a fleeting glimpse the wonder that is J was difficult to impossible.

Then, six months ago, we had words. Words were coming with regularity. There weren’t a lot, but some days he was repeating and trying them out and other he was using this small handful of words purposefully. The progress was great. He was working hard, trying to do his best with what he was given.

Now? The path my son has travelled in this past year is tremendous. I cannot even try to measure the distance because that is just how far it has been. The world laid down the mightiest of challenges to J and rather than inch along slowly – a pace that is perfectly acceptable, mind you – he blew along like a charging bull! We have spontaneous words now, sometimes coming in two and even three word combinations. We have some great listening and simple direction following emerging. He is playing games with easy instructions, he is singing songs with that can be clearly deciphered by people who don’t see him every day, he even makes attempts to communicate with strangers.

I know at least a couple of the wonderful people who helped him to get to this point read this and wow. J is showing off the fruits of your labor and his own so beautifully. I have conversations with my son is something that I thought was in our distant future, not in our today and now. Between you all – his Early Intervention team, his beloved Building Blocks ladies, his Kioko therapists and his team at school – you’re all making him just blossom and I know I shouldn’t be but I am so in awe and so in love with the beautiful little boy who is getting more beautiful by the day.

So I had a conversation with my son, and it was glorious.

Road ID

So. One of my big things with J is making sure that somewhere on his person is something that can identify him. He won’t tell you his name, so something visible and readily available to whoever he encounters feels a must to me. He also has MedicAlert, but that doesn’t quickly give the person in front of him his name and pertinent information.

Last year, I got dog tags made for him through My Precious Kid and love them. They come with nifty little carbiners plus silencers, so I would stick them on J’s shoe and off he’d go. Unfortunately for me, this doesn’t work with most sneakers and we’re getting into a season where sandals aren’t entirely appropriate. I could stick the dog tags on his coat but he isn’t always wearing that. When he is out in public he does indeed have his shoes on the bulk of the time… so I went searching.

A few months ago I had ordered a Big Red Safety Box from the National Autism Association. It has some great stuff including a coupon to receive a Road ID. Don’t know what a Road ID is? Check them out at their website.* I was dubious at first. All I had to hold this thing onto J’s shoe was what seemed two flimsy pieces of velcro. The plate I had made was quite nice and I could jam pack information onto it. These guys, they knew what they were doing when they made this product. I am unsure if they knew the impact it could have on children like mine but it’s a wonderful little thing. Wary of how well it would hold, however, I stuck it on his sneaker and have been kind of standing back over the past weeks to see how it works.
I am pleased to report it works great! When he comes home from school I’ll snag a picture of how they fit onto the sneaker. I love that I could word what needed wording in a pleasant manner, alert people to the fact J is non-verbal and point them to immediately call me. He still has his dog tags, mind you, but this is a great addition to our safety items.
A completely dorky aside: I am loving being a crash test dummy to finding things that work to help these kids and our families. Using Mabel’s Labels has been a blast, using the dog tags and shoe tags has been amazing… Who knows what else I will find!
——————
*= in the interest of full disclosure my link to Road ID is an invite link – any who make orders from it will help earn credits towards future IDs J may need. If you aren’t comfortable with that, it’s cool, just go to http://www.RoadID.com and purchase via their site without any affiliations. It’s all good. 🙂

Yeah

Little bear has a new ‘thing’. It”s actually a very good thing that did not become a thing until he saw the strong reaction it got.

J is still recovering from his cold. This means he has occasional coughing fits. When he has one, I generally ask “hey, are you alright?” after he’s done. It used to be that the question would go unanswered but he might look my way or just generally putter around as per the usual, showing me that he was indeed okay. Sometimes I have to use this to distract him from the temptation to try forcing a gag that won’t work. Yeah, that’s another thing for another day.

Yesterday this all happened while he was standing across the room and as the coughing calmed, I asked “are you okay?”. He looked directly at me, a rare occurrence in and of itself, and nodded stiffly then said “yeah”. Clearly. With meaning and intention.

I was stunned.

Now, as I’ve said before, J is not a silent kid. He babbles a lot and is echolalic, meaning repetition is king in his language. His skills in repeating words have exploded in the past months, enough that one must watch what they say around him. The words come out most when he’s in a place he is secure and comfortable, so I hear them all. It’s not often he is asked a question and gives a direct, precise answer though. It is quite, quite rare.

So of course I gushed and teared up and wrote on Facebook about the event.

Now, never ever let non-verbal fool you. Never let it be thought that J doesn’t catch ever nuance of what’s going on in the world around him. Why? Because wouldn’t you know it, now every time I ask if he’s okay he automatically crows “yeah!” in search of that big, happy reaction. There’s snot pouring down his face and he’s hollering that he’s just fine.

We have some learning to do, but it’s going in the right direction so yeah…We’re alright.

Ni Hao, Internet

Yesterday, J visited his ENT for his post-op check up. He has healed beautifully, which is awesome to hear, and unless something different goes wrong or he has issues down the road we are discharged from the ENT’s care.

This is good to hear because despite the fact the ENT is a great doctor (Dr. Doolittle, he has offices in Winchester and Woburn) he scares the daylights out of me. It is just the unfortunate side effect of his build and demeanor. He’s not gruff or anything, I just don’t know him, can’t read him and immediately perceive him as a threat. Sucks but that’s reality. 

J has no such qualms. Despite the fact this is the man who operated on him, he was completely cool with office visits and even for a brief moment opened his mouth on his own for the doctor to inspect his throat. When the doctor said “farewell”, my non-verbal son answered him with a firm “ni hao” and then marched us out of the office to continue with our day. 

Ni hao is Chinese for hello. There is a little cartoon called “Ni Hao, Kai-lan!” that is apparently a thing on Nick Jr. He’s seen bits and pieces and this is what he took away from it. 

“Non-verbal” is such an odd situation to try and explain to other people. They see a little boy who makes a lot of noise! He says a lot of words, or approximations of words most of the time, and he sounds like he’s carrying on fantastic conversations. He mimics the cadence of common conversation beautifully. He can parrot a lot now, but what people who don’t spend significant time with him miss, through no fault of their own, is how little of what he says is functional. Help, please, thank you… Those come on a regular basis and with purpose. Bye-bye is pretty solid too, but the words that get used appropriately come and go with the wind it feels like. School will be a godsend for him as it will reinforce structure and language skills but for now it’s all a crapshoot.

It’s pretty amazing to me still how expressive he is. You can never mistake his mood. I’ve written about how he has a face like glass before and I love that about him. That coupled with his wicked little sense of humor keeps things lively. He has also learned to turn those big grey eyes up at strangers to melt their hearts before they can think ill of anything odd he’s doing, which works for now but I fear the day it begins to fail him. 

Hopefully that’s a long way down the road.

Anyway it’s about seven hundred degrees here and ants are attempting to take over this slum apartment so off I go to kick some insect butt. Wish me luck.

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