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

Starting Second Grade Already?

He's off! Jake just boarded his bus, bound for second grade, and I'm not gonna lie.  I'm doing the happy dance!  Today is the first day in MONTHS that I've had all to myself. I'm resisting the urge to go back to bed.  I have way too much to do to catch up after an entire summer with kids in tow.

This summer has been amazing though.  After an ENTIRE SCHOOL YEAR in which the teacher did nothing.  I kid you not. Nothing.  I'd walk into class and find kids standing on the table, others running around, shelves cleared, and no work being done; Despite countless meetings and discussions with principals and Directors of Special Education, therapists, and everyone I could talk to, Jacob digressed instead of progressed last school year.  There was no inclusion last year.  How could we when he had begun hitting and spitting again? When he was found in the middle of a five-lane road, within feet of an active railroad line, and at a school that borders a highway? I spent most of last year clawing my out of a pit created by a teacher who didn't care about the progress of the kids.

I may have cried when I found out he was getting a new teacher--one he'd had in preschool and is gung-ho about making sure the kiddos have the best education possible.

The second Jacob started Summer break, I went about the business of fixing everything that broke during school.  We went to a developmental neurologist who recommended a book, "1-2-3 Magic" By Dr. Thomas W. Phelan - Because it's 18 months later and we STILL didn't have an ABA provider for Jake. Two days into implementing the book, and we began to see results.  MAJOR results.

He went from flopping and throwing tantrums for thirty minutes at a time, kicking, screaming, spitting, and attempting to bite, to 10 seconds of showing displeasure, then complete compliance.  No drugs (he was diagnoses with ADHD and they wanted to put him on Ritalin). No spankings.  No arguing. No frustration.  He is now manageable. Hallelujah!

He's beginning to talk too.  When he gets made, he'll sign entire sentences to me, which I try not to laugh at. But it's so darn cute to see him scowling as his little hands are gesticulating wildly telling me why he's upset. I love it!  When he speak,s he signs and tries to speak the words at the same time.  Every day he gets a little bit closer to being understandable. And he's gone from saying one syllable of one word, to trying to say two or three words at a time.  It's glorious!

His independence is increasing too.  Last year he wanted me to dress him and make his food. Now he dresses himself, and is beginning to work the microwave to help me fix him simple meals too.  I expect he'll be making his own sandwiches and other foods by the end of the school year.

Plus, there haven't been any elopements in months.  My stress levels are dropping and I'm having opportunities to enjoy my son, rather than just manage him.

Life is good.  Change is good--as long as it's in the right direction.  My little boy is growing up.  Not only physically, but emotionally and cognitively.  I think I'm gonna just sit here on my first day of school and bask in that knowledge for a little while.  Yeah.  Life IS good.

It's that time of year again - SCHOOL!! (Along with several random photos collected over the last several months!)

Jacob is ready to go back to school. 

How do I know?  Well, it didn't take a rocket scientist this morning.  We were taking his big sister, Courtney to her 2nd day of kindergarten.  Parking is pretty bad at Court's school, so we had to park a ways away and then walk.  As we waited at the crosswalk, several large, yellow school buses passed us and Jacob began jumping up and down and grunting like a monkey.

A couple of times, he tried to run to the bus's doors so that he could climb on.  After my heart stopped once too many times, I grabbed him and put him on my hip to carry the rest of the way to the school.  

Once inside the school, I put him down to walk next to me. He yanked his hand out of mine, and began running down the hall, grinning from ear to ear.  Finally, half way down the hall, I caught up with him - After he'd made 3 new friends, of course.  

We discovered that his big sister was supposed to start the day at the playground to wait until the bell rang, so we took her outside to the toys.  Again, Jacob began jumping up and down excitedly (his 'happy dance'). However, much to his dismay, rather than letting him play with the other kids and climb all over the toys, I was cruel enough to walk him away from the playground!

Thus ensued a world-class tantrum including throwing himself onto the ground, wailing like he was being tortured, and laying limp on the wet grass as I tried to pull him to a standing position.  Needless to say, he was not happy.  (By the way, the pull-up on his head in the picture above is CLEAN - just in case you were wondering.)

Eventually, I wound up putting Jake back on my hip and carrying him back to the car, listening to him whimper each time a bus drove by us again.  (The picture above is Jacob, drawn by his big sister)

By the time he got home, Jacob was furious at me.  Apparently, he doesn't like to be teased with the hope of going back to school only to have his hopes snatched from him.  Who wants to spend the day with your mother anyway??

Lucky for us, Jake's school starts next Tuesday.  Woot! Woot!

I don't know whose happier.  Jacob or me?

I'll give you three guesses. 

Picture Day!!!!

What a crazy 6 weeks it's been since my last post.  No, I haven't forgotten about DownRightLiving.com  It's just that I've been sick.  Then my kids got sick.  Then I got sick AGAIN.  Hopefully, now that summer is just about here, I'll be done for the year (cross your fingers!)

Today, I got such a treat. Jacob brought home school pictures!

Now, I don't know what happened between the time when I was a kid and we took pictures only once per year.  No re-takes.  You got what you got.  And most of the time, what I received was something I wanted to hide in a deep dark corner in the recesses of my room.  No seriously.  I have proof. See?

  

Now a days, kids get to take school pictures, re-takes if they don't like them the first time, and a second set of school pictures at the end of the school year!  The first couple times I saw the request for school picture money come through our home I scoffed.  Why do you need TWO sets of pictures?  But for Jake, who is only 3 anyway, 7 months makes a big difference.  Case in point:  Beginning of the year pictures & End of the year pics.  

My daughter, Elisha LOVES his beginning of the year pics.  I don't.  I love love LOVE his new one.  So much so that I've already posted it on Facebook, Instagram, and (now) here.  Yes, I'm a doting mother.  I can't handle it!  I just love my little guy so much!  Enjoy :)