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!

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. 

Surviving COVID when you have Down syndrome and other updates

 Hey, everyone!  It's been  long time since I've written and I realized that not writing my blog means that I'm forgetting important details about Jacob's life.  So, I'm back.  Did you miss us? 

The last couple of years has been crazy busy for a number of reasons.  Obviously, COVID has played a factor. Who hasn't been affected by COVID, right?  

For Jacob, it meant pulling him out of school completely.  He has already been sick for several weeks prior to the schools shutting down in March (I'm pretty sure it was COVID--all of us had it, and I'd nearly gone to the hospital because I couldn't breath.  BUT we all survived.  I've never been the same, but I digress.)

With the mask mandates, and Jacob's underlying conditions (heart patient, overweight, sleep apnea, all the good stuff) we didn't want to risk him getting is (again?). And there was NO WAY we could get him to keep a mask on. So...No school. 

It was a hard transition. He loved seeing his friends and his teachers, but the mandates were not designed with children like Jake in mind. Now, nearly two years later, and we're still out of school.  Jake is 100% ABA, which takes up 6 hours/day--or the equivalent of a school day. 

Two years ago, he was basically mute.  He could say one or two words, but most of his communication was sign.  On Sunday, he said a four-word sentence without prompting.  We're seeing progress!

Since we've been gone, Jacob's big sister had a baby!  So now, Jake is an uncle!  And BOY does he love that child!  He would follow him around and play with him all day long if he could!  He's the ultimate doting uncle.  And Baby Ben adores his uncle!

Also, you know that story about Jake I wanted to publish?  I did. 

 

Sort of.  

It's part of an anthology.  And it's a short story--about 5,000 words.  It's the beginning of what my nonfiction will be when I get it published.  Yes, I still plan on publishing it. it's just taking longer than I wanted.  Life happens that way, you know?

If you'd like to read the story, It's part of the ANWA Anthology. All proceeds go to their scholarship program.  

Read this book NOW.  It's FREE on Kindle Unlimited!

I will be back.  MUCH sooner than last time. I promise.  As COVID rages on, and I continue to deal with the ramifications of how that affects Jake and others like him, I feel compelled to speak up and let other understand that he shouldn't be pushed to the back of the line or ignored. 

But more than that, I want to document all the amazingly wonderful things that are Jacob.  Down syndrome is only a sliver of who he is.  And I'd love to share it with you. 

Until next time...

Susan