J-Bear and Me

learning to navigate the world, j-bear style

Tag: progress

Superboy

Before I dive in to this post, just a note for those who missed it on Facebook – We are fundraising to celebrate J’s birthday by sponsoring a class at 4 Paws for Ability! You can read about it here.

This week, J’s hair was showing signs of growing out to a very unsightly mass. My son has sensational hair. It’s luxuriously thick, a beautiful shade of dark brown and soft as can be. The downside of this is that he hates brushing it, so when it grows out to any length because he hates haircuts even more, we have some disasters. His hair got long enough this time that it was in his eyes. I am sure that the Beatles would be impressed with his mop top but neither he nor I were entirely so.

easter

J, Easter Bunny and Brookie B. Thank you Xaverian!

I pitched the idea of a haircut every day. Every day. It was pitched always with low pressure. When something is already a source of major fear and anxiety it is absolutely wrong to add even more stress to it. There is no way that anyone in the situation will learn how to cope if we do that, right? So I pitched the idea gently, made a silly game of discussing it, and let him say “no”. The more he could not see out from under his bangs, the more I asked.

Then, in a moment of potential fail, I bribed. Now, we do not have to bribe in this house usually. True bribing, the offering of an experience or a prize in exchange for doing something desperately disliked, is exceedingly rare. This was a desperate time, it called for desperate measures… like offering a choice of Thomas and Friends trains or track. I asked him if he would like to get a haircut, then get a Thomas train after he finished his occupational and speech therapies on Wednesday…

…And he said yes.

I had to ask him 2 more times to make sure I heard correctly! We gathered the troops and pretty much ran headlong towards a local salon. We weren’t taking any chance of minds being changed.

J has always fought entering salons. He misses nothing. He knows where he is going. Brooklyn and he approached the salon with us and he started to hesitate but entered. It was busy, noisy and crowded. He stayed with us. No screaming, no resisting yet. He waited his turn, an absolute feat for him. A wonderful young woman named Danielle called us back when it was time.

He started to fall apart. I had to remove his coat. This strange but friendly lady was talking to him. He was scared because he’d never been this particular place before and his last memories were not good when it came to haircuts. hairscut

Then the stars, somehow, aligned.

Danielle exhibited a kind, gentle patience. We got his coat off. He sat on my lap. I wore the cape, he did not. He faced me, not the mirror, and he struggled… but when she started the clippers he ceased his screaming in fear and said “that tickles!”. He struggled mightily with all that a haircut entails, but he was not paralyzed with outright terror. He even laughed a couple of times. He allowed two passes of the cool blow drier to remove fallen hair from his head and shoulders, something he’s never done.

He did amazing. 

Now, he is roughly 10lbs lighter and 100 times happier without so much hair on his head. Brooklyn loved on him when he was done and they left side by side, just as they came in. She hated waiting for him while hearing him in distress but did her job exactly as she should.

We chose trains at the store not 15 minutes later, brought them  home, added them to our collection and enjoyed a fun night of playing with them. Now to hope that this experience keeps him aware next time that it won’t be quite so bad. It may not be easy, but it’s not terrible.

———————-

Oddly, the same day, we had another new experience.

J talked to a stranger. Spontaneously.

I generally have to prompt him when we are talking with new people. He rarely engages until he’s settled with the new people, which is fine. I wrote this up on my personal Facebook so I hope you’ll forgive my copying and pasting:

When we were leaving his OT/Speech clinic a gentleman (well dressed, handsome, clearly from a more luxurious tax bracket than we plebs) was behind us at a little distance. He caught up as we reached the end of the path to the parking lot, greeted us with a nod as he passed us and went on his way.

Or so he thought.

Jacob called after him. My son, who rarely to -never- talks to strangers without prompting, called spontaneously after the stranger. “HEY!”

The gentleman, being absolutely worthy of that term, turned back. “Yes?”

“Where you going?!” Jacob asked, like a surly little police officer.

“To my car,” the man answered, amused.

“Why?!” asks Officer Jacob.

I stepped in at this point, trying not to cry with laughter more than embarrassment because the man handled it so beautifully and I could not believe it had just happened. He smiled at Jacob and Brookie, waved to us and went about his life. This kid will never cease to surprise me.

My son sounded straight out of Southie, a silly Boston stereotype with his strong questioning. This man, who we have never met and may never meet again, could not have been any more friendly about it. That day, I swear… the universe was all together there for J to succeed however he wished to, so he did. He does everything in his own time, and his own way. I have zero doubts that my son is able to do anything he sets his mind to. He will show us his amazing mind and amazing skills in his own way and time, just as he does now, and I am loving being a privileged spectator on this adventure.

My Sunbeam

May God grant you always a sunbeam to warm you  ~ Irish blessing

This post should be easy to write and yet is not. There is so much emotion that comes with discussing the past year of my son’s life. I do not know where to start, so why don’t we go back to the beginning. Birthdays are great for that.

J stormed into the world at 4:58pm after I had labored for days then struggled against what I know now to have been PTSD-related panic. My first memory of him is of him laying against my chest, clinging to my finger with his tiny fist as the world kind of went crazy around us. I promised him then and there we had one another and everything would be alright, no matter what.

It feels like we’ve been holding hands ever since.

When your child is born it’s like a blind date: You might know the gender, maybe even have a few hints about the person you’re about to meet but most is left to chance and fate. I knew I’d likely be having a little boy, and that he was going to be a chunky monkey but that was about it. The little boy I got didn’t look anything like any baby I might have ever imagined, but he was exactly who I was supposed to meet. Dark hair, grey eyes, chubby cheeks and a cheeky demeanor… He was perfect. He is perfect.

This past year I have watched J graduate from the care of Early Intervention, leaving the loving guidance of Virginia, Nicole, Jess, Catherine, Loretta, Dana and Nicole HB to move on to preschool. He took those first steps warily, fresh off having his tonsils and adenoids removed, but once he gained momentum he never looked back. He had everyone who loved him to guide him plus a whole new group of people who came to love him too. His therapists at Kioko remained a reassuring constant to us too, something that was instrumental to making this transition possible.

He broke his arm in late July and we learned a lot of good lessons, like AquaCasts are amazing and mama was wise to make sure Santa brought a trampoline to mitigate a little boy’s need for jumping and falling.

When school started in September I was nervous. The schedule is rigorous for him. 4 days of full day school, 1 half day of school, plus two private therapy sessions… When you’re a little mite, that’s a big schedule. He adapted and not only adapted but thrived under the guidance of amazing classroom staff. The foothold that his EI team had gained in terms of language allowed J to blow past his stated goals for the year in mere months! He uses speech simply but effectively. He follows simple instructions. He understands emotions. He identifies some needs and wants. He recognizes needs and wants in his peers and happily plays with other children.

That last phrase is huge. J had only fleeting interest in peers a year ago. Now, at the end of the day, he says bye to all his friends in class and they say bye to him. I get teary eyed every time it happens because there is little more beautiful to me. He has friends, and these little kids are amazing. I have watched them all grow so much this year and I am dopey but I am as proud of them as I am of J.

People pat me on the back and say “you did this”… but I didn’t. I drive him around. I make sure he gets where he needs to be and has the tools he needs. I help him, yes, but all this accomplishment is thanks to the support of remarkable professionals and his own determined will.

If the year between his third and fourth birthdays has been huge then the year between this birthday and the next is going to be borderline overwhelming. The strides he has made now will only continue, and hopefully expand further, as his dog comes home. It is you, internet, along with all our friends and family, that we have to thank for that blessing. You’ve helped to change his life even more, and all for the better.

He walks under the warmth of a sunbeam every day of his life, this boy. He has some tremendous guardian angels and tremendous family here around him. I am so amazed that he is my son and grateful every day for the blessing he is even when I am covered in snot and half deaf from a bad day. I am grateful for him exactly as he is and giddy to see exactly who he will become. He was born my sunshine boy with the storm cloud eyes and he will always be that boy, deep down inside, even when he’s 6’3 and able to bench press me.

babyfluffs

aww, baby fluffyhair

Happy birthday, baby boy.

The Process of Communication

Here is a brief history of the past year to eighteen months of J’s life in terms of his communication:

When J was evaluated for autism in early 2013, he had barely any words at all. He had maybe a handful of signs, but a lot of his interaction with the world was not very communicative. His basic needs were met because those around him most knew he needed to eat, to drink, to be changed, to be clean, to be comforted and so on based on just knowing his routine and relying on that. We could learn what he preferred and did not prefer by his reactions, but there was very little purposeful communication whatsoever.

Early Intervention as well as intensive occupational and speech therapy began to eye the wall that was the barrier between J and the world at large in terms of purposeful communication* and started finding ways for him to find ways to get his message around said wall. We used sign. We used pictures, and still do use pictures. There was a lot of the people around him, especially me, constantly talking and constantly narrating and constantly employing language and communication in every manner we could while allowing him his time to get a foothold with it.

There was no hurry. We were still getting basic needs met and even occasional wants. It was not great, but it was functional, and we could get by understanding that all things will come in his time.

This is why that was so important.

From this past September to now, the gains in practical language have been fantastic to behold. It’s like he climbed halfway up the wall and takes great pride in hanging out looking over it. He loves to point and label things now and manages to surprise me with all the things he knows the name of. It’s a lot like listening to someone who is learning English as a second language as when he does not know the way to explain what he wants to say, he relies on a round about way of saying it. An example of this is when he saw a colorfully painted artistic representation of a gear, he announced “cake!” because it fell more in with how he sees cake and he did not know the name of what it truly was. It’s incredible to behold, really, for it challenges you to see the world you take for granted in a totally different light.

We still rely on pictures for communicating an idea of where we are going and what we might be doing when it’s time to try new things. They are a lifesaver for us, but he is using few picture cards to show people what he wants. He has on his own decided words are useful. This works for him, and if down the road he decides that written word is even easier, then we’ll cross that bridge then. I know I find written word far easier than spoken word so I would not be surprised or shocked by him turning out to be similar.

Then again, he’s such a little social creature sometimes that I can see him being completely addicted to chattering away.

I think the biggest change that has come with his language explosion is how he scripts. Last year, his scripting was barely decipherable. I could guess at what some of them were by just the cadence of the syllables and the one or maybe two half formed words that would filter through. He knew, obviously, just what was playing out in his mind’s eye, but it took me a lot longer and I was around him the most. Now, they’re far easier to discern and feature more than just what he might have seen in a familiar cartoon. I hear snippets of his school routine, or his home routine, or little scenarios he’s made up combining several of his favorite things. His imagination is starting to blossom which is terribly exciting all around. I know the way his mind works is remarkable (not that I am biased, right?) and I am eager for the world to see it.

A lot of this growth is limited to home, school and his therapy center. However, this is how he grows his skills. He will get completely confident in his safe places and he will branch out on his own. I have no fear that he’ll be chatting anyone who will listen’s ear off when the time comes, and have all the patience in the world about him getting there. One day, he’ll sit atop the wall that represents the barrier in communication between him and the outside world and he’ll grin like a fool, knowing he’s got it conquered.

That’s going to be a beautiful day, and I am so glad and amazed and awed and proud of the progress he has made. I am forever indebted to the teachers and therapists who have helped him to get here, and who have believed in him as much as I have, knowing he’d sort his way out and work his way along when he was read.

———–

*purposeful communication= There is still a lot in J’s speech that can just be jargon. They’re muddled sounds that could be words but only are said within his scripts. This has been the case since before he entered Early Intervention in early 2012 only now, it’s diminishing in prevalence. It once was 90%+ of what he would say, now I would guess it at maybe 30%-40%.  I do not dissuade him from his scripts for they, like his other stims, serve an important purpose to him. The sounds/muddled words can stay as long as they are required.

The Mayor

Have you met my son, the mayor?

He must have learned something from my friend and former co-worker Garrett for he’s really starting to become the little man about school, about his therapy center and about anywhere he’s familiar with. He has abruptly become all about people and it is both amazing and shocking – amazing for how happy it makes him and shocking for how stark a change this is from the little boy who entered Early Intervention two years ago.

This is what keeps me going, after all. I may have some pretty strong beliefs about all the wonderful things that are there in my son, but I am well aware that most of them aren’t always seen by the world at large. The biggest job undertaken since he entered Early Intervention and now since he has entered school has been to open that all up…

Well, I am proud to say that the doors are opening. Fast.

I have always called him my sunshine boy. He has always had this tremendous personality and a smile that could lift the heaviest heart, if even for a moment. When you combine that with his empathetic nature it makes for quite the compelling little man. Now, let’s layer some sincerely comedic timing and silly mannerisms and there you have it, my J-bear all neatly summed up. He adores making people smile and laugh. He loves initiating social games with the people he knows. The way he speaks is still quirky and sometimes hard for people who aren’t with him daily to understand but he never gives up on it – he persists til whoever he means to convey something to gets it.

The boy he is becoming blows me away. I want to keep fostering these caring, thoughtful, social, silly, wonderful traits that are emerging while letting him know that the days he isn’t so sweet are okay as long as he doesn’t stay there. I want him to forever know that even the best of people have off days. It is okay to be frustrated, to be mad, to be sad, to be however you feel but to not be unproductive with it. Feel it, work through it and do what you need to be better later – within reason of course.

I want to keep seeing him be the mayor. I want everyone we interact with regularly to continue to look forward to seeing him and what he’s up to. I want to see all of this social behavior just plain explode and flourish when he and his dog team up in October. Just stand back and imagine the power of one charming little boy and his equally charming sidekick/service dog…. Man. I really think they stand a good chance at changing the world, even if it’s just the world immediately outside our door.

I think I am going to like continuing to work for this little mayor.

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