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!

Dear Parents of Children with Down Syndrome...

I've always known I'd write a book about Jacob. 

I knew it the moment he was diagnosed with his disability.

I knew it before I knew I'd become a writer.

His story needed to be told.

This year is the year I will put this knowledge to action.  And, in true Allred fashion, I'm going overboard. 

I'm writing not one book (as blogged about before), but two. And I'm outlining a third book. This is in addition to the four nonfiction books about growing up in a family of ten that I'm re-releasing on Amazon, the six-book YA thriller series I'm self-publishing, 2 anthologies I'm participating in, and a YA urban fantasy I hope to pitch to a traditional publisher in June.

Am I insane?

Probably. Yes.

I've been putting off my "Jacob" books for years, telling myself I'd find time later.  But in light of all the abortions based off a Trisomy 21 diagnosis, and some countries even trying to eradicate Down syndrome completely, I can't put it off any longer. These books must be written NOW.

With that being said, I'm putting a call out to any and all parents of children who have Down syndrome.  I'd also like a select few people who don't have kiddos with Down syndrome but are closely affiliated with them - Special Education teachers, brothers and sisters, aunts and uncles, doctors and nurses, therapists, etc.  I'm looking for letters.

Why?

Because when Jacob was diagnosed, I was inundated with condolences. "I'm so sorry." "I don't know what to say." "What are you going to do?" Sometimes silence and shock.

Where were the congratulations and squeals of excitement I got with my other three children?

I aim to fix that with this book. This will not be a book filled with, "I was horrified and then I learned to love my baby."

This book will be, "Congratulations on having a new baby!  Your life is about to embark on a new adventure. And it will be amazing!"

 Am I going to candy-coat everything? Nope. But my emphasis will be on looking at the good rather than obsessing over the possibility of bad.  Embracing the similarities rather than freaking out about the differences.

If you're interested in being a part of this letter, I want to hear from you!!!

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.

Adoring Daddy

The last several months have brought about subtle, yet significant changes in Jacob.  I don't know if it's because he's actually changing, or if, because of all the things going on with Elisha, I've begun to notice and appreciate the little things in life.

The biggest thing, for me, has been how Jacob has changed from being completely self-involved, to slowly incorporate others into his list of concerns.  In the past, Jake would run from activity to activity, with me in his wake trying to keep up.

 But now, he tends to want me to be a part of his adventure, searching me out so that he can grab my hand, and pull me with him to discover the flowers growing outside, or to watch his favorite show, or to practice Gemiini together.

The other week, however, it truly hit home as our family went to play tennis for the first time this season.  K.C. piled me, Nathan, Courtney, and Jacob in the car and took us to the high school's tennis courts, which (thankfully) have a very high chain link fence with gates that latch closed.  This allowed me to not worry quite so much about Jacob and gave him the impression of freedom to run as he chose.

I very much expected him to run through all of the tennis courts, chasing after balls, gleefully playing and exploring by himself.  However, this night, he stayed pretty close to his daddy's side.

K.C. offered him a tennis racket, which Jacob wheeled with pride, teetering from side to side as he tried to compensate for the extra weight, and grinning from ear to ear.  He'd stand right next to his dad, trying to mimic his stance, looking up occasionally to make sure he had his legs and hands right, then swinging at any oncoming balls within 5 feet of him.

Nathan would toss a ball over the net, and Jacob would grin, run after it, swing-- usually missing, and run after the ball.  Once the ball was retrieved, he'd run back to his dad, hand it to him, and 'assume the position', taking great care to mimic KC's stance.

It was absolutely adorable!  What a heart-warming experience to see Jacob and KC playing together, and having fun.  In a life full of chaos and running to and fro, it's a tender moment, that makes me smile, even now, in retrospect.

Those are the moments worth living for.

Stopping To Smell The Roses

 Last post I talked a lot about all our plans for this summer, and how excited I was to be to be doing 'nothing' with my children. Here we are more than half way through the summer and we have done none - count 'em ZERO of our 'nothing' planned activities this summer.  But you know what?  Amazingly, I'm OK with that.

 One of the biggest lessons I've learned from being a mother of a special needs child and 3 other above-average intelligence siblings is to just go with it.  Hope for the best, but expect the worst.  I guess I wouldn't exactly say expect the worst, because sometimes I can actually get stuff done.  But I've learned not to get bent out of shape if things don't happen the way I want them to.

For instance, NO - Jacob still is not potty trained.  But, if I let him run around nekkid (which is his preferred clothing status anyway), he does make it to his potty toilet about 80% of the time.  If he's clothed, he'll end up wetter than if he'd jumped in the swimming pool.  There seems to be some sort of disconnect having to do with the whole 'take your pants off before you pee' thing.  I don't know.  But I'm happy with his progress and still hope to have him potty trained by the time he starts back to school. 

 Although I never got Jake into swimming lessons, I've seen tons of improvement in his gross motor skills.  For instance, a few months ago, he wasn't able to navigate the McDonalds play area.  He could go up, but couldn't go down, and spent most of his time yelling for his sister to come help him.  At 5 years old, she wasn't too keen on following her little brother around helping him up and down the obstacles.  And I don't blamer her.  Today, we went to McDonalds and Jake didn't need help a single time.  He can go up, down, through the netting, down the slides, through the tubes, and is completely independent.  Not to mention the fact that at home, he does somersaults, jumps, tackles, walks up and down the stairs without any assistance, and a whole myriad of other tasks he couldn't do at the beginning of summer.

 

Plus, Jakes's been trying out a new program we discovered to help with his speech (he's still only doing a couple consonant sounds) called the Gemiini program (www.Gemiini.org).  He's 2 days into it and already mimicking some of the sounds, pointing at the animals, and his babbling has begun to accelerate.  I'm cautiously optimistic.  I'm sure I'll give an update on my next entry. 

The toughest part about the summer time has been the change in his schedule.  Jacob does NOT like to have his schedule messed with.  And going from several months in the strict schedule of the early intervention class to being home all the time and dealing with the chaos of our large family, there have been some adjustment periods - i.e. he acts out by getting hyper and getting into nearly everything he can get his hands on.  I've spent most of my summer just going from mess to mess to mess cleaning up after the boy. 

 At first, it drove me crazy, but after a while, I realized that he was just curious.  Jake is an active boy with an active mind.  Without the stimulus of school, he is busy trying to find other ways to keep his mind busy.

We've still gone to track meets, and play dates, lots of time with extended family, reading books, exploring, playing outside, etc.  We still plan on going camping, and tomorrow our family will be watching a minor league baseball game complete with fireworks afterward (That should be exciting!).   But I no longer worry about my long to-do list screaming at me from the kitchen table.

So until next time, just know we're be-bopping around the house, doing our own thing.  Although we don't look like we're doing much, we take time to stop and smell the roses, enjoy the little things, enjoying that fantastically wonderful thing we call family and health, and bask in the sunshine of life.