J-Bear and Me

learning to navigate the world, j-bear style

Tag: communication

Odds and Ends

So, mama apparently forgets to write. Here’s some miscellany since when last I sat down and updated here.

The end of January started what I believe is the snowiest 30 days in Boston’s history. Seriously we were/are buried. It just kept coming, storm after storm dropping a foot or more and our town was more than negligent in cleaning up after each hit. J gets uncomfortable when just a smidge of snow gets visibly on his shoes, forget having to hoof through snow that was up to his forehead or higher. He did not play in it, he’s still only now coming around to touching or stomping on some of it. It was hard on all of us, especially he and Brooklyn. Hopefully now the weather will slowly improve into a beautiful spring and this boy and his dog can get outside and enjoy the world as they love to do.

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Language has been the biggest change in J in the past months. He is saying a lot of purposeful phrases and incorporating new scripts into his day-to-day life. There’s a lot more “I don’t know!” rather than “NO!” in answer to questions and more importantly, his listening and being able to follow directions is continuing to blossom. He says some great sentences now, none of which I can think of off the top of my head of course, and is very warm and engaging to familiar people. His biggest communicative challenge continues to be extending those skills to people outside his familiar circle but that’s what Brooklyn is there for. She brings the people, he can learn to share his charm with her supporting him.

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Speaking of Brooklyn, we had out first and hopefully only major fail season. This weather combined with dietary and timing factors led to some embarrassing situations in two different stores. The uptick of this situation is that I believe I am now an expert pit crew. The downside to these situation is that people are not understanding or kind. The staff at 4 Paws for Ability is fantastic though, one of the head trainers talked me through a few strategies and along with fabulous advice from a dog food expert we seem to have Brookie B handling things a lot better. As the weather warms I am looking forward to more excursions to work on her skills in public. She is fully trained already, mind you, it is our job now to keep her fresh and ready for whatever J may need of her.

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J’s birthday is in June and he will be a big 5 years old. Our boy, he is so blessed in terms of clothes and toys. He has everything a little boy could ask for plus a dog. This year, our goal is to make his birthday about giving back. Sure, we will do our usual fun traditions on his birthday but we also would like to fundraise in his name to sponsor a training class at 4 Paws for Ability. Sponsoring a class means you fund their refreshments during training, their training materials and their graduation goodies. Our class was sponsored by one of the area universities and they spoiled us rotten.

Watch this space for further details. Maybe we’ll even be able to sponsor more than one class, time will tell!

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.

Echoes

J’s earliest steps towards spoken word were echoes of things he heard around him, specifically that which he heard on cartoons. It was barely even recognizable until you paid attention and realized it was not the literal syllables he was mimicking but the cadence and expression lent to those syllables. He could capture the mood and melody of speech but not the precise verbal components.

This was the base we had to work with, and it was a good one. It proved he heard all around him and how very involved he was. He was showing us that he was, indeed, always listening and always taking things in. The cartoons he mimicked scenes from gave him comfort. They were predictable, easy to understand. It makes sense when you view the world through a different lens.

Now, it is a year post Early Intervention almost and his way of speaking and interacting has changed and grown dramatically. This is most evident in his scripts. Scripts now have words and are clearly echoes of parts of his day. I hear things about school in his scripts, from how the teachers gently ask another child not to touch something to how another staff member is very sharp in demanding quiet from the children. There are still lines from cartoons and now even songs, filled with words and sounds rather than just sounds. It’s remarkable to behold.

Last week, he surprised me. He took his echolalia and turned it into pragmatic speech. He was chilling out as we were driving to his therapy session and whenever we go out, I begin our trip with explaining “okay, first we go (place #1) and then we go (place #2)!” in a cheerful manner. Sometimes this is with visuals but of late it has been without as he’s been doing fine without that extra support. Well, good sir J misses nothing. I had told him where we were going and when I said no to a request for ice cream, he perfectly parroted my manner of speaking when he chimed back with “First ice cream, then home!”

You clever little monkey.

I was laughing so hard, and so very proud. No, we did not get ice cream then go home. We went to therapy, THEN got ice cream and went home.

Last night as I laid down with him to help him go to sleep he was whispering something I could barely hear. I scooted closer and pretended to be asleep as I hugged him and he kept speaking quietly as he settled in to finally go to sleep himself. He was repeating all I usually say to him throughout the day. All the years of narrating our lives was condensed down into a few short minutes of perfect mimicry. It was all I could do not to cry. It was the biggest return on an investment I have ever had.

He’s always listened. I knew that. I never knew how much he retained, for children are children and mom’s voice can go in one ear and out the other at times. This wasn’t the case with J though. My words are there, right in his heart, he just needed time to find a way to show me that.

Talking to Chip Clips

I talk to chip clips.

“Chip clips! How are you? Are you happy today?”, I ask with open enthusiasm.

The chip clips, affixed to a bucket by magnets, are moved to nod in answer to my questions.

These inanimate objects might as well have names, personalities, families and jobs. They are an intricate part of our family, at least. They live on metal pail given to J the Easter before last and are one of his stim items. The simple act of looking at these two chip clips on their pail from various angles is peaceful to him.

So I talk to chip clips.

This is not the only thing I talk to or with. Stuffed animals come to life, displaying exaggerated reactions and emotions to reflect to J how emotions work. Cars with busted parts in the parking lot to a garage requiring reassuring J that while said car does have a boo-boo, it will be okay, someone is going to fix the boo-boo. Trees must be greeted and occasionally hugged on the way out of schools. Light poles are said hello to as well.

My child struggles with social skills. There was a long time of his life where he displayed few and seemed distant, even removed. The progress he has made is substantial and part of that progress entails living in a manner most unexpected yet most oddly pleasant. We end up going a lot slower through life and seeing a lot more. There are details he catches that I would have otherwise missed, all because we stop at all those trees.

It’s tempting some days to hurry him along with the thinking that come on, we said hi to those trees already earlier today… It’s becoming more clear that when there’s no emergency, there’s no need to hasten or skip these things. These habits, they only linger while they serve a function even if that function only is obvious to J himself and to forcibly remove them is fixing what is not broken. That ends well for no one.

So next time you see a bedraggled mom with a sweet-faced little boy stopping to chat with trees or talk to chip clips, remember that as odd as it may be to you it might very well be very important to them.

Besides, chip clips are fine conversational partners when they are voiced by a nearly 4-year-old who formerly had near zero functional communication skills. Fine partners indeed.

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.

Learning Emotions

This may be typical 3-year-old stuff alongside typical autism stuff but J-bear understanding emotions is kind of a trick. It’s not that he does not feel emotions, for he feels the entire gamut and then some I believe. It’s not that he is not empathetic either, for his sense of empathy has been known to blow many of us around him away. It’s the actually labelling and sorting of them that just is not there. Not yet.

… But for one.

A couple of weeks ago J started announcing loudly and cheerfully “HAPPY!” in his bright little voice, practically doing a dance whenever he said it. He’d sit in the back of the car sing-songing the word. So much joy came out of this little boy every time he said the word that it always made me smile at the bare minimum.

Then it dawned on me.

This was a thing. He was telling me something. At whatever given moment he was cheerfully announcing the word, every bit of evidence spoke to him actually being the emotion he declared. Overwhelmingly so.

Then it happened. Saturday, I was feeling miserable and J hopped up onto the couch beside me. My good side, as good as a side could be at that point. We started goofing around with my phone and the front facing camera but never can I generally get him to smile into it. Then as we were snapping photos I said “happy!”…. and this happened:

jacobcouchhappy

excuse my huge blue shoulder

He was intentionally joyful! He repeated it as brightly as possible and I got this image.

For a little boy who barely communicates with the world he just plain blows me away sometimes. He’s making things known and that just delights and amazes me. I love nothing more than watching this little boy learn and grow.

 

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