J-Bear and Me

learning to navigate the world, j-bear style

Tag: speech

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.

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.

Without Words

J had a good but bad doctor appointment this morning.

We’ve returned to the GI clinic that saw him as a baby for help with his eating. He’s not gaining weight (again) and it’s just a struggle. His new GI doctor is fantastic. He has a cheerful disposition, is educated and understanding about autism and managed the to make a visit that was very frustrating to J as gentle as possible.

I could have talked to this doctor all day. It’s rare I meet a doctor like that!

Now, the doctor was fabulous but the clinic… not so much. The staff apart from the young lady who checked us in seemed like everything was overburdening, the nurses and assistants had no clue how to work with a kid dealing with sensory overload as J was and the building was HOT. Devil’s armpit hot.

Have I ever mentioned that J overheats easy? And doesn’t know what to do with it besides melt down?

Now pile that onto the fact we had to go for blood work and you realize we were destined to fail.

Picture if you will a closet in your home. Add to it some cabinetry and a table. Now stuff 4 adults and one screaming flailing child who doesn’t understand what’s happening into that closet. Turn the heat up to 90.

Then ask one of those adults, who has had some training, to get blood from the child.

This was what happened to us. It was HELL. The first phlebotomist was a damned nightmare. She DUG IN HIS ARM. Repeatedly. He was howling in sheer panic and I could not blame him. Then she complained she couldn’t get much and marched out. Thank God for the tech she brought back with her… That woman could get blood from a stone. She had him finished in no time. I wish she’d been the first to see him!

So after everyone involved lost 15 pounds of water weight we were done.

We went to Build a Bear, visited a play area, got donuts and came home. I am toast.

——————-

The title of this post refers to something that happened in the waiting room.

J does not sit still in waiting rooms. He moves around, stims, searches, explores. It is just how he operates to settle himself in an environment of uncertainty. My job is to make sure no one else gets bumped about. Today, he noticed a little girl who may have been close in age to him. She was in a stroller style wheelchair and smiled every time he looked her way.

He smiled back when  he caught her look and went over to sit beside her. Neither said anything. Neither needed to. They made a connection without words and merely enjoyed the presence of one another.

People spend a lot of time stressing “making” these kids talk in a conventional manner. I feel sad for them. They must not see how much they communicate without needing a single spoken word.

Mama Mama

It’s rare it comes in singular.

“MamaMama!” “MamaMamaMama!”

Directly at me. Never to anyone else.

People have names now. I have a name now. This isn’t simple repetition, or scripting taken for conversation, this is purposeful use of words. This is cheerful and always wonderful use of words.

“Mama, happy?” he asks as we sit waiting for his speech therapy appointment.

There was no one else in the waiting room. We were just sitting around and had only just gotten there. Sometimes, he’ll ask something because he heard someone else ask it, or I had just asked it of him. This one he asked all on his own and he waited eagerly for my answer.

“Yes baby, I’m happy,” I said.

“Okay!” and he went back to running back and forth from the door to my chair as he tends to do whenever we arrive.

He and I have been fighting rotten colds and allergies the past week or so. If I cough too much I hear a very loud “You okay?!”….

I imagine he’s retaliating for the millions of times I have asked him the same question. Incidentally, whenever I ask him, I expect him to say “no”. All that is required is an answer for me to know he’s actually okay. If there’s not a peep in response, I know to something might be up.

I do not find myself getting too sad when I see other children about his age speaking in a more expected manner. It’s becoming so much easier to see J’s path, and to see his tremendous progress even in just the past 6 months. The thought of “never” has slipped from belief in terms of J’s future and all possibilities remain open. Are there challenges? Will things be unconventional? Absolutely.

Since when is the road less travelled necessarily a bad road?

He finds his way, and as his Mama Mama, I could not be more proud.

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.

Merry and Bright

Tonight as I worked on our Christmas dinner, I coughed into my sleeve.

Whenever someone coughed, J asks immediately “okay?” and he will persist in asking until you answer and reassure him you’re okay. It’s my fault he does it, as whenever he gets coughing I ask him the same thing. The habit is completely endearing to me when he does it though.

Anyway, tonight I coughed. And he said, “okay?” and I was busy with what I was working on and did not answer immediately.

And he said “fine, mama?”

Everything stopped, if just for a split second.

One year ago, “mama” was only said as a fluke. It was said once and forgotten. The past few months, “mama” has been said when prompted, and with intention and understanding. I can ask him to bring something to mama and he will bring it to me and so on….

But… “Fine, mama?”

My son asked me, by ‘name’, if I was okay.

The boxes under the tree, he’s making it a habit of trumping anything that could be in them.

Yes, baby. I’m more than fine. I am wonderful for you having asked.

Merry Christmas and Happy Holidays, everyone.

Communication and Speech

I write off and on about J-bear’s communication. I have written about how he is non-verbal but not quiet on several occasions. It’s a major portion of life with him, recognizing this fact, so I suspect that if I sat down and really looked through all my babbling I’d find a lot more about this subject than I think right now.

Wandering the internet there were several discussions in several separate locations about communication. It focused on how speech driven a lot of the therapy given to children on the spectrum is rather it being communication driven. The conversations were interesting and most of all, they were true. Spoken word is the common manner with which we communicate but it is not the only way we communicate nor is it the only way we can effectively communicate. It is common thus it becomes the enforced norm as it is easiest on all else involved.

Except when it isn’t.

What I read was from family members of people on the spectrum and people who are themselves on the spectrum. Their points were valid and brought up my own feelings on the subject: Speech is not the end all be all.

Now, I want my son’s life to have as much ease as possible. I want people to enjoy the same understanding of him as I do but that is not realistic. I am with him the bulk of his days. I have spoken J-bear since the first moments of his life. I have the benefits and blessings of knowing how to read every bit of communication he has with almost complete fluency. This spoils me to a point, I suppose. I am open to accepting that truth. I am also open to the fact that speech might never be his main method of communication.

That’s okay.

My son was born with a manner of being that makes what is easy for most not easy for him. If using a communication device, using picture communication systems, using sign language, using spoken words, using gestures, using smoke signals, using Morse Code, using whatever works allows him to get what’s going on with him across then so be it. It will not be easy for others but that’s not what this is about. It’s his life, not mine or any others. If it works for him it is then my job to help work on being there to support his needs and support making what works for him effective to the world around him.

It’s not perfect. I envision a lot of uphill battles and frustrating events in my future. This is what was given to me the day I was given my son to love. There’s no nobility in it for it is what you do for your child, no more and no less. My child just happens to have different needs and it is my job, as his mother, to adapt and give him every tool and advantage I can manage to see him flourish.

He will flourish. I know deep down that one day he’ll tell me some amazing stories. The way he already laughs, smiles and engages without many words shows me that without a doubt. His mind is so beautiful; so clever and quick that once he cracks the code on how to share it with us all I bet we’ll all be highly amused and maybe even a little humbled. I can’t wait.

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