Friday, October 7, 2022

Jacob's Expressing Himself and Showing his Artistic Side

 I'd often wondered how Jacob would learn to express himself if he couldn't talk. 

I could tell by watching him that he had way too much to say, to remain uncommunicative with the world. 

It did not surprise me when he took an interest in drawing. 

Initially, he scribbled. A LOT.  But soon, he began adding structure to his lines. Spiders. People. Monsters.  Lots and LOTS of monsters. He's obsessed with them. But he's also obsessed with anything slightly scary. 

During ABA he drew pictures instead of practicing his letters. Then he started asking for paper when he wasn't in ABA. Soon, I was seeing marks on the wall (sigh - there went the new paint job!) and then he was asking for different things to color with. Instead of a ballpoint pen, he wanted a colored pen. Then he tried colored pencils. And back to colored pens.                                            

In June, I took him to Hobby Lobby, and we perused the art aisle. He was like a kid in a candy store!

"What do you want?" I asked him, pointing to the row of paints, pens, and pencils. 

He pointed to a package of colored pens.

"Pens?" I asked.

He nodded.

"Use your words. P-eh-nz," I said, enunciating each word.

Jake stared at my mouth and mimicked each letter. "Ph-uhhhhh-ssssss,"

I nodded and smiled. "Good job." Jerking my head toward the cart, I said, "Throw them in."

He grinned, giggled, and tossed the pens into the cart, then clapped his hands and did a happy dance, hopping from foot to foot as he giggled.

We walked a couple of feet and did the same thing with paints. And again with chalks and papers. In the next aisle, we found canvases. They were on sale—half-off!

We pushed the cart down the aisle while I looked for 8X10 canvases. They'd be the perfect size for Jake and his behavioral tech when she came to work on Wednesday. They could go outside, sit on the grass, get a little sun, and paint to their heart's content without worrying about a mess. 

"Mom," Jake said from behind me.

I turned to his voice, and he was standing in front of a massive white canvas, about two feet tall and four feet wide. Oy. 

"Uh, that's a little bigger than I'm looking for," I said. "Let's find something smaller."

Jake shook his head and pointed to the ginormous canvas.

"It's too big, Jake."

He pointed to the canvas and shook his finger. "Dis."

I glanced at the price tag.  Yep. Half-off.  The massive canvas was only going to cost me about fifteen dollars. I glanced at Jake and squinted. Would it end up being a jumbled mess? Or did he have something in mind? Sometimes it was hard to tell. But for fifteen bucks I was willing to throw caution to the wind and let him embrace his creative side. Who knows? Maybe he'd surprise me.

"Okay. Grab one," I said. 

Jake's eyes widened, he giggled, then he pulled a giant canvas from the aisle and handed it to me. I picked it up to put it in my cart and chuckled. Too big to fit. I was going to have to carry that thing with one hand the whole rest of the trip. 

Thank goodness we were almost done. 

Our final stop was in the acrylics aisle, where I let him choose any ten colors he wanted. Hues of reds, oranges, pinks, and purples.  

His grin was as big as his face and he laughed and did a funky skip dance all the way to our car. All weekend he asked to paint, and I kept reminding him he needed to wait until ABA on Monday. 

As soon as Ameila showed up, Jake was pointing to the canvas and the paints and dragged her, and the person shadowing her, out to the yard where they could paint. Thank goodness it was a sunny day. He probably would have painted in the rain if he had to.

He gave each person a paintbrush, and I brought out some paper towels and water.  Then, he got to work, pouring his paints onto the giant canvas and swirling them all over the white surface. 

He grinned, and pointed to the others, making sure everyone got a chance to add their art to the project. We made smiley faces, and monsters, and wrote letters, and painted our names. He added a wheel, a heart, and a whole host of designs we couldn't interpret, but I'm sure meant something special to him. 

When we were done, we left the canvas on the grass to dry till after dinner. 

I expected him to forget about it, but he was the one to remind me. We went outside, retrieved his masterpiece, and he had me hang it on the wall of his bedroom where he could see it from his bed. 

A few days later, he added three more canvases, decorated with other behavior therapists.  Then, he added drawings made with ballpoint pens and written on lined paper. Words he wrote by himself. A spider (actually, lots of spiders!), people, butterflies, hearts, and anything else he was in the mood to write. Each page was taped to his walls, or on his ceiling near his bed. A few he had me put up above my computer so I could see them when I worked. 

As the weeks went on, the drawings became more precise. The hearts were less boxy, the lines smoother and rounder. The humans began to have fingers and necks and arms and hair and faces. The monsters had more legs and body parts.  Now, four months later, he continues to draw. Nearly every day he has something new to offer me. 

I pulled out an old camera I bought for when our oldest daughter played sports. It's a very nice camera. Not professional grade, but definitely not for selfies. 

Now that I don't have anyone in sports, I don't use it nearly as often as I should. I can do everything I need with my old iPhone. 

So I loaned it to Jacob and wound up with 137 photos of his toes, his knees, the rug, and his belly.  But there were a couple of gems too. Hopefully, if his interest continues, I'll be able to share some of those photos as he gets a better understanding of how the camera works. 

I'd love to see the world from his eyes. 

Thursday, March 10, 2022

Explosion of Words

 It's been so long since I've done an update on Jake. 

Life has been a whirlwind of activity. It always is, especially when he has six hours of ABA (Applied Behavioral Analysis). 

We're fighting insurance, and have been for months now.  Despite the fact that ABA is clinically proven to be effective for those with Down syndrome, insurance only wants to pay for those who have Autism. But six hours per day of ABA would mean nearly $2000/week in fees without insurance. 

Our doctor has given a diagnosis that insurance has said qualifies him for ABA, but they still won't pay for it.  It's been months and we're still fighting them. I'm not going to lie. I'm beginning to sweat. Any moment, I can get a phone call from our ABA provider cutting us off. 

I've tried to get a second opinion, and they're 18 months out for appointments. 

I have only one more person we can call.  We actually made an appointment with them four months ago, but they changed their registration proceedures and took us off the appointment list. So now we're starting all over again. 

Add COVID to the mix, and everything is getting done at a snail's pace. It's brutal. 

But do you know what isn't brutal? 

Jacob's recent explosion of words. 

Yes, so many new words!

Words like 'thank you' used to be signed by blowing a kiss. Now he says, 'dank you.'

Today, as we watched Abominable before bed, I heard words like "home" and "Buddah" "fish" "baby" "water" "whoop" "snake" and a few other words. He's actively using and practicing words. And he delights in seeing my reaction to each new word. 

Plus, he's beginning to see the power of words; telling me what he wants to watch rather than being forced to choose between two movies of my liking. Counting, and asking for ten more minutes before going to bed, or asking to play with his big brother. Asking for (chicken) "nuggets" when he's hungry, or a "smooth"(ie) if he wants something different. 

Last week, my husband and I went on vacation alone for the first time since Jake was born. Jake didn't like it. Our adult son was watching Jake and his sister for the week, and said that several times, Jake would come to him and sign simultaneously while saying, "you, me, drive, mom, dad, now." He wanted Nathan to drive him to get us from wherever we were. Right NOW. 

When I came home late Monday night, Jake was already asleep in bed. In his usual fasion, he stirred late in the evening, so I crawled into bed, and put my arm over him. He rolled over, opened his eyes, and looked up at me. A grin washed over his face and he said, "Ahh, Mamma." Then he wrapped his arms around my neck and hugged me until he fell back asleep. 

Life is good. 

Speech, when we hear it, is amazing. 

It's hard to believe Jake is no longer a child. He's an eleven year-old man-child with meaty hands, and mischevious grin.  And I love him to death!

Friday, March 4, 2022

My "Jacob Book" is written

So I submitted my "Jacob Book" to a publisher a couple of months ago, and found out recently that they want to publish it. (Insert squeeling, screaming, and few tears of joy here). 

Something I've been talking (threatening) to do for years now, is about to come to fruition. But what that means is that I've been going through old blog posts re-reading my posts about what life with Jacob was like in the early years. 

I'm not going to lie. There were times I cried. And there were moments where I had to stop work to give myself a breather from the emotions coursing through my mind and my body. 

To say that this book is emotional, is a massive understatment.  But when I look at Jacob's face, and watch him interract with others, I know that no matter the emotional toll, this story HAS to be written. 

It HAS to. 
People need to see that Down syndrome is not something to dread or be afraid of. 

 It's a joy.

A blessing. 

The hardest thing I've ever done. The hardest thing my FAMILY has ever done. 

Worth every minute.

I often find myself unaffected by the little things in life. Because I've already endured the big ones. All too often I say, "It's all good." or "It is what it is." 

Because life IS what you make of it. 

And Jacob reminds me each and every day that there is so much beauty in life, if you will look for it. If you will take a moment to count your blessings and embrace the glorious messiness of humanity.

It took months to submit my book to the editor. It was so much harder than anything else I've written. And I've written more than a dozen books already. But hopefully, in the rawness of my story, you will see the beauty, and the love, and the hope.

I will keep you posted. 

Life is good.