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!

Camping, Leashes, and Socialization.

Last week our family went on our much-anticipated family reunion trip to Montana.  This was more than 9-months in the works and was intended to celebrate the 60th wedding anniversary of my husband's parents.

Extended family drove as much as 20+ hours to be a part of the week-long event which took place in a massive KOA completed with log cabins, RV spaces, and tent sites.

KC and I had discussed, and fretted over how Jacob would react to being in the woods with so much family, away from his structured activities at home, and anything familiar.  I'd recently discovered that Jake was a runner, who doesn't look back and won't stop until something stops him, or he runs into a literal wall.  The thought of him roaming freely in nature without walls to stop him terrified me.

Despite my apprehension, we made it to Montana and pitched our tents.  On day 1, Jacob ran from me twice.  And I'm talking down the gravel road, up the hill, and nearly to the bathrooms before I caught up to him and drug him home.  It's a good thing there were no cars driving around.  Then, it was a matter of, "Jacob, don't touch."  "Jacob, give me the knife."  "Jacob, don't throw rocks at the cars."  "Jacob, don't turn the spigot on full-blast and splash everyone around you."  "Jacob, sticks aren't for poking people."....  You get the picture.

The fist few days were exhausting.  Then I got sick.  I was cramping something fierce, and they seemed to be getting worse with each passing day.  I was taking every chance I could get to lay down, hoping the pain would pass and leaving the stresses of Jacob to the rest of the family.

After one particular break, I re-emerged to be informed that Jake had gotten through the electric fence designed to keep the wildlife out of the KOA and one of our family members had to go under it to retrieve him.  Wow.  Just, Wow.

So, out came the leash.  I had already spent the last 4 1/2 years promising myself I wouldn't become that parent.  You know, the one who has their kid on a leash in public places like an animal or a pet.  I, surely, could find a way to keep Jacob safely within arms reach, right? Nope.  There comes a time when a person must accept the fact that she is wrong, and realize that sometimes it is better to keep your child from being electrocuted than worrying about whether or not they look like a dog on a leash.

Surprisingly, I discovered that Jake liked the harness too.  He'd bring it to me in the morning and have me put it on him.  Sometimes, I'd follow him around, and others I'd let it dangle like a tail trailing behind him.  That darned harness was a lifesaver.  I'm not going to lie.  I'd do it again.

The other epiphany I had while camping was realizing I haven't been socializing Jake as well as I should be.  How incredibly easy is it to just say, "Nope. Let's just stay home today." Or to have the older kids stay with Jake and Courtney while I go out and run errands.  But keeping Jake locked up in our home - whether intentional or not, isn't doing that little boy and favors.  How will he learn social boundaries, how not to touch everything around him, or even how to socialize properly with strangers if he never has opportunities to have those experiences?

We had chances throughout the week to explain to his cousins that he is different and why he is different.  It was an opportunity to educate, enlighten, and show them that though he is different, Jake is still very much the same and likes to play just like every other little kid.

In spite of being sick and having to eventually go to the emergency room, I feel as if the trip was a good one.  I learned a lot, and Jake (I hope) learned a lot and was able to enjoy the experience with his extended family and loved one.  It certainly was an adventure no matter how you look at it!