To The Lady At The Bookstore

To the lady looking at the Jesus Calling books in Redeemed Books today... You don't know me, or my son, or my daughter. And you'll never know how much your kindness means to us. My son just finished his 4th appt this week, when we went into Redeemed to look for a few books. He hit overload and started going into a melt down shortly after we walked in. I took him to the bathroom and waited for him to calm down so we could go back to looking. He loves books. He did well after we got out of the bathroom, looking at a few racks with patience and slight intrigue at the pretty colors. When we finished that row, he was ready to leave. But mommy took him to one more row, and he was done. Throwing himself, kicking, screaming, hitting. I hold him and keep him from hurting himself, because we can't leave until he's done or we just reinforce this reaction every time he doesn't get his way...

Then you came over to our aisle, looking at the devotionals alongside us. And while I'm dealing with my son, my daughter says hi and attempts casual small talk to show you this isn't something to worry about - it's our version of normal. But you keep looking at me and my son, and I brace myself for the inevitable criticism as you ask how old he is. 8. And his name? KiKi...

Next you do the unthinkable. You pick up a book. And show it to him. And you start counting the other matching books piled in front of him... And he stops screaming, and he waits as you point to another book. As his meltdown is suddenly ended by sheer distraction, he watches you in amazement. I steal that moment of distracted awe and tell him we can go now and usher him to check out. Happy and ready to go on with his day...

I told you thank you several times. But honestly, there aren't enough thank-you's in the world for what you did... Mommy trying to distract him doesn't work anymore, he knows mommy. A stranger trying to break into his world - even for a second - totally confounds him. To the point that he forgets to scream. And kick. And hit... He becomes the little boy that's no longer having a bad day and just wants to be happy with his world.

My son is KiKi. He's 8 and deaf and autistic. And having a very very long week. But your few moments of grace brought him peace and serenity in a way I can never describe. Thank you.

Communication Sucks Some Days

These are the days I can't explain to people with verbal or truly communicative kids. KiKi has been screaming - as in full bodied, blood curdling screaming - and hitting walls and himself, and stomping and jumping for 45 minutes. He wants something. I've tried asking him what and where (with no response), and after 45 minutes he finally tells me "green, blue, yellow, pink" then goes back to screaming. Again... another 5 minutes of screaming then the same answer, "green, blue, yellow, pink"... I am so frickin clueless as to what he's trying to describe. :(

Watercolor Painting

KiKi is doing his first watercolor painting today. He learned how to use watercolors from a combination of Dr. Panda app learning games and the Creative Galaxy tv show on Amazon Prime. These are two assets which have proved beyond value to his learning and expansion of both base life skills and social skills.

That being said, these connections are not immediate and are not made at the time of the engagement with the show or apps. He averages watching Creative Galaxy for about an hour every other week, and the Kindle Fire is a rare treat that he gets for about an hour a month. The last time he engaged either was a few weeks ago.

So this is how it works. Daddy has today off, so KiKi and I are watching him play a video game. Then KiKi decides he's done watching the game and uses his device to ask for "scissors" and "paper". In that order. I give him scissors. He again asks for paper, then points to a roll of easel drawing paper that's still in the wrapper. I nod and he brings me the paper to open. I open it, and he sits in the living room floor to cut a piece of paper. First piece is too small, so he puts it aside and cuts another. I'm curious what he's going to do with the paper, because at this point he hasn't asked for anything else to go with it.

Then he goes to his device and asks for a "paintbrush" and "paint". I sign "where" (technically "how"), and he goes over to a watercolor paint tray and touches it. I nodded and gave him the paint, and a cup of water for it. He's asked for the water to be refreshed three times, and he's not done yet. This is what it looks like so far.

Where's Your Jacket

One major step KiKi has made in the last year involves using an AAC (Augmentative and Alternative Communication) device. It's basically a tablet with a bunch of picture in different folders that speaks when he pushes a button. It's not used much in public, but great at home and in the car. Meaning he can ask for a drink without hitting and screaming to get his point across (most of the time).

It also means we can communicate with him, to ask basic questions or inform him of simple things, like where we're going next. A question goes something like this. I sign "where" (actually "what", but we're not going to to into the specifics on his version of sign language in this post), followed by selecting "clothing" then "jacket" on his AAC device. He looks at me, and I repeat this process a second time. He smiles, pushes "jacket", walks to his sisters' room doorway and waits. I follow and ask "where" again. He points to the top bunk bed, and waits for me to nod an "okay" for him to enter their room. Once he gets the nod, he goes in, climbs the ladder, fetches his jacket, gets down, and puts the jacket on.

The whole process takes about 8 minutes. Some times longer, if he doesn't want to find what he "misplaced". This same method works for finding shirts, socks and shoes. Yes, these things all have a place they belong. But, like most kids, he sometimes takes them off when he's not supposed to. And then he typically hides them to avoid getting in trouble.

Before his AAC device, this scenario took more like 30 minutes of sheer frustration and everyone else tearing apart the house to find whatever he had moved. Partly because we couldn't effectively communicate what we were looking for, and partly because he knew there was no way to hold him accountable for finding his own possession - he enjoyed watching us scamper like a game of hide and seek. Which is fine for a few minutes, but sucks when you have no way to say "I give up".

Welcome Letter

Kiki has hit a point where some days his progress is overwhelming, and other days I feel like we've taken several steps back. It's been this way for a long time really, just that on days when I'm already stressed and have a lot on my plate - I notice it more. And I especially notice the stares (and glares) from other people in the stores I take him into, on the days when nothing seems to be going right. I celebrate because he *only* threw himself down three times in one shopping trip, and yet most of the audience to his little display doesn't "get it". A few do. You can tell by their merciful glances, like they somehow understand. Like those two seconds of empathy are meant to tell you that you're not alone.

In looking for a way to somehow explain Kiki to everyone else without going through the apology phase, I started looking for alternatives. Because, well, honestly, I'm not sorry that you've encountered a Kiki. I'm sorry he's having a bad day, and I'm sorry that's your first exposure to his little world. But I'm not sorry that he's pulled you out of your comfort zone. And I'm not sorry if he's making you rethink your own definitions of "normal" or "misbehaved". Enough rambling. The point is that I needed another option. A plan B, if you will. So in looking for "autism awareness cards" online, I found several examples of what other people give out to those who find themselves accidentally being audience to a child's meltdown or tantrum or whatever cute (or not so cute) label you want to give it.

One of these cards had a blank line to enter a web address, presumably for one of the many autism awareness websites. But then I realized that such a card could serve a second purpose. It could give me a chance to share my baby's world with the rest of the world (or at least our little corner of it here in SW MO). And thus this blog was borne. I'm writing this introductory message with today's date left intact and unaltered. Then I plan on adding more entries to give an idea of some of his progress up to this point. The dates on those entries will be altered to show their real place in his little timeline, despite this blog not having existed yet.

My goal is to have a place to share his world and give it a chance to merge with yours. Peace.

Perler Beads

KiKi finished his first Perler bead design...

See that goo next to the duck's tail? He's watched his sister make aquabead designs. He tried using pump hand soap, to make the duck stick together. Bonus points for proving he CAN use pump hand soap independently. Just not for washing his hands.

I pulled up a youtube video and showed him that you use an iron to get the beads to stick together. We got to walmart and he asked for beads (on his AAC device) then pointed to walmart. We went in and I found an iron, which he happily put in the cart. Got home and he unboxed the iron and was trying to use it before it was even plugged in!

Aldi Fits

I'm really not sure whether to call this a good day or a bad day, so let's go with it being both.

The bad?... He threw himself to the ground fussing and semi-screaming three times in one trip through Aldi.

The good?... He threw himself to the ground fussing and semi-screaming three times in one trip through Adli.

Yep. It all depends on perspective. He had zero complete meltdowns. No kicking and clawing and head-banging. No trying to slam his head into the floor and having to be fully restrained to keep from hurting himself... He threw himself down three times, which is a record because it's usually at least five or six times in that store. And the throwing himself down was self-controlled to the point of just fussing, semi-screaming and light hitting. He tried so hard to contain himself, and that was honestly the best trip he's had through Aldi since he learned how to walk at 3 years old.

He's been having fewer public outbursts overall, although the bad days are still just as bad as they've been for a long while. Hopefully they continue to become more scarce, if only to lessen the stress and pain he inflicts upon himself.

Sorting Beads

This is KiKi hard at work. Sorting 22,000 perler beads. By color. He's been using the pincer grasp with both hands, and crossing the midline on both sides. This is his fine motor therapy for today.

This is after about 3 hours of him sorting. :)

Discharge From Feeding Therapy

Today, KiKi was officially discharged from feeding therapy. His therapist ran out of things to work with him on, because of the improvements he's made in the last year. His final feeding therapy celebratory meal? Three oatmeal muffins.