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!!!

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.

Update on Gemiini.org - It's been a long time coming!

What does a crab say?

Holy cow!  I did NOT intent to go six months before returning Jacob to the Gemiini Program. But, life, being life, threw us a curve ball and we've been knocked flat on our butts for the last four months dealing with test after test, blood work and doctors appointments for our oldest daughter (age 19) after it appears she had a TIA (a mini-stroke) at Christmas. 

Come to find out she has a hole in her heart and a macro adenoma (tumor) on her pituitary gland in her brain.  But....that's a story for another blog :)

During that same time, we discovered that Jake's T-tubes had fallen out.  How can that possibly be? Those buggers are sewn into the ear drum and don't fall out. They're surgically removed. 

Yeah, well.  This is Jake we're talking about.  If it can't be done, he will do it. 

So, in January, he had his second set of tubes put in, and the ENT said this ears had looked horrible when he did the surgery - pieces of flesh were removed, both ears were highly inflamed, lots of fluid behind the eardrum, etc.  Yeah, all sorts of nasty fun. 

But, when the surgery was done, he began to hear.  How do I know?  Well, he'd walk into the ENT's entryway, which was basically a stairwell, and yell to hear his echo.  It was adorable - in a cute sort of way.



What does a Lizard say?

We took him to an audiologist twice to make sure that he could hear and were told that he can hear down to 2 decibels (he's in the range of normal).  Wahoo!

Now, we begin playing the game of catch-up.  Still, at 4 1/2 years old, Jake is basically non-verbal.  Occasionally (as in once every 2 or 3 weeks) he will say a one or two word comment, which his hard to understand unless you're looking for it.  But other than that, life is all about a series of grunts, hand gestures, and pulling on my hand to show me what he wants.

Last week we were finally able to start Gemiini again - after nearly 7 months.  I figured we'd be starting all over again.  But you know what?  It wasn't like that at all. 

As soon as the videos came on, it was like he'd found his long lost friend.  Jake looked at me and his eyes lit up, then he began mimicking the animals and the sounds he'd learned previously.  It was like he'd never stopped!  I can' tell you how nice it was to know we hadn't lost all his hard work. 

We were able to get about 20 minutes in that morning.  And another 10 in during the afternoon. 

The big issue we're having right now is that I'm using the Ipad and he likes to play with the buttons - hitting play, then rewinding, then fast forward, etc.  I think it's a universal thing for kids his age.  I hear there's a way to lock the screen, which is my goal to figure out tonight. 

But I know that people were waiting on an update.  So this is the first.  I'll add a video of him watching Gemiini in a couple days so you can see where he's at in the process. Then I'll give you more updates as we progress.

Thanks for your patience!

Birthdays and Buddies

What a crazy busy week it's been!

Jake had is fourth birthday on Saturday (Wahoo!) and it was surprisingly low-key.  What I love about this age is that there are no real expectations from the little ones.  He didn't care that I bought him a cake.  He didn't care that the gifts never actually got wrapped - he liked playing with the bags for days afterwards.

He LOVED the car we bought him.  It had buttons for him to push that created sounds and flashing lights on the top of the hood, then the car moved forward - fast if he was on the linoleum.  The sounds drove the rest of the family crazy, but I think that was part of the mystique for Jake.

For quiet times, we bought him several small dump trucks, front loaders, bucket trucks, etc.  They're perfect for the palm of his hand and he can carry them anywhere, which is a bonus for him.

And, of course, a magic microphone to help encourage his speech.

Like I said: Low key, but nice.

Tuesday we dressed him up in his knight costume and the little ones went trunk or treating at our church.  He's been munching on candy all week.  I will be soooooooo happy when the candy is gone!












And yesterday, I got to see Josh, Jake's NICU buddy - also with Down syndrome, who was born the day after Jake.  Josh and his mom came to town and we got to spend a little over an hour catching up with one another as Josh had his monthly chemo and check-up.

I am so lucky to know Marla and Josh.  Not only because they're a great family, but how many people have the opportunity to have a child nearly the EXACT same age as your own to kind of guage things off of?  I can look at Josh and realize that he's a much better talker than Jake, but Jake is taller and bigger (probably due to genetics and the drugs from the cancer).  Both of us are going through potty training right now, and have discovered that both boys are doing it backwards from our other kids - mastering pooping in the toilet first, then peeing.  Who knew???

It's been a great reminder that we're all in the same boat, our kids do things a little differently, and sometimes slower than non Ds kids, but we're all getting it.  And, really, would you want it any other way?  Nope.  Not me.  I love Jake just the way he is.  He enriches my life in so many ways that I wouldn't have experienced if he didn't have Trisomy 21.  He makes me a better mother.  A better person.  And that's what it's all about, right?  Being the best person you can be.  Sigh.  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. 

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.

Summertime & Growing Up

Summertime is a bittersweet time around our house. On the first hand, I get to spend more time with my kiddos playing, laughing, having fun, and doing all the things we didn't have time to do during the school year.

 On the other hand, I am spending nearly every waking minute with my kids.  I'm not going to sugar coat it.  I, a say-at-home mother with 4 pretty fantastic children, am NOT, by any stretch of the imagination, maternal.

I don't spend hours on the Internet searching for fun activities to do with my kids during their sunny days and snuggling them every chance I get.  OK, I do snuggle a little bit.  Can you blame me?  Look at that face of his!  He's adorable! :)  What make motherhood rewarding for me is the knowledge that I am doing something truly important: Teaching my children to be happy, healthy, productive parts of society who will give of themselves to make the world a better place.

 What I enjoy about summer break is that time the older kids get to spend with the younger kids.  We have a pretty wide age spread between the olders and the youngers.  Essentially, we have 2 families of children.  The now-college freshman and her brother, the high school freshman, and then we have the kindergartner and the pre-schooler.  The funny thing is, though, that their personalities are so similar, it's like I'm raising my older kids all over again! Except this time I can fix some of those pesky mistakes I made the first time - or make my older kids experience the frustration I had with them when they were younger. Oh the poetic justice!!

 In the meantime, we will spend our summer playing games with one another, cleaning up the perpetual mess in our home, sunning ourselves alongside the kiddie pool, going to track meets for the olders, and recouping from an exhausting school year.

 There are no big vacations planned for the first time in years.  No going to Nationals for Track, or Family reunions requiring 12 hour drives in the Suburban.

 I think our biggest adventure will be a camping trip in July an hour away.  And maybe a couple family hikes.

 Jake spends his time constantly exploring and learning, although few words, if any come out of his mouth.  So I'm concentrating on reading him lots of sound books that require him to make sounds to mimic the animals.

 He's discovered art, and movies, and playing in the kiddie pool.  We'll make a major attempt at potty training this month, along with swimming lessons.

But for the rest of the summer, it is about living life simply and taking the time to enjoy the little moments with the ones who mean the most in our lives.  Because before we know it, they're all grown up and leaving the nest.

Happy Graduation, Elisha!  We love you!

~Mom & Dad

He Reminds Me of Calvin & Hobbes

This week we decided it's time to update our pictures in the Living Room.  And, in homage to one of our favorite cartoon characters, Calvin of Calvin and Hobbes, we took these:

We had so much fun sorting through the hundreds of photos we've accumulated of Jacob in the first 3 1/2 years of his life.

Even though I've spent the 12 years prior to his birth around persons with disabilities, I guess living with a child who has Down syndrome is different.  Or, maybe we're just really really REALLY lucky.  Although I doubt it. 

Jake has already taught me so much about never underestimating the spirit of an individual, and to never judge them by their 'label'.

Jacob has been surprisingly intelligent, resourceful beyond belief, and his expressions mimic those of Calvin's. 

Every morning I wake up to see a twinkle in his eye that grows brighter as his discovery of life increases.

Day after day, I notice the frustration he feels, evident in his rare outbursts - not because his mind doesn't comprehend, but because his body won't cooperate with what he's trying to get it to do.

I see pride reflected on his face when he accomplishes a task he has worked hard to achieve.

Then there's the mischievousness.  Oh, my sweet, naughty, little rascal!  He has a special look on his face and inflection in his giggle when he teases me or tries to get away with something he knows he shouldn't.

Then there's the calm patience he exudes.  I often experience this emotion on one of his many sick days.  Although a relatively health child, I think his medical issues early in life diminished his immune system.  It seems as if he brings home virtually every cough, cold, or bug possible from school or church.  Sickness generally means I get to have a precious few moments of quite as I cuddle with my rarely-still son.

When he isn't sick, Jacob is usually HUNGRY!  That means he spends a LOT of time trying to manipulate me into giving him more food.  He takes his time eating, spending several minutes well after the rest of the family has left the dinner table savoring his food.  It's not unusual for my little boy to ask for 2 breakfasts, and snacks before lunch.  "Please, sir.  May I have another?"

Outgoing.  Jake LOVES to get his picture taken.  And if I don't do it, he will!  Thus, one of his first selfies!

Contemplative.  This is one of those emotions he shows that I really didn't expect to see from Jacob.  Especially as a child. But on occasion, I will catch him sitting still, seeming to contemplate the world's troubles and how to fix them.  Before long, he will get up from his little chair and go about his business fixing whatever it is that's been weighing on his mind - usually with one of the above mentioned emotions.

Competitive.  Another delightful emotion I've seen as of late has been Jake's competitive nature.  His big sister is only 18 months older than he, which allows for many opportunities to compete.  His favorite thing is to play basketball and catch, or running (which often results in him catching up to, and tackling his sister - with perfect form, I might add!)

Aside from his endless love and compassion, I must say that my favorite emotion I see Jacob exude is his imagination.  This little boy is no vacuous space housed by a shell of a body.  Oh, no no no no no!  Little Jacob is this treasure-trove of thoughts and emotions wrapped up inside a firecracker of a boy.  Every day I will, after hours of playing with friends or his sister,  find him playing by himself perfectly content playing a game of make-believe that only he understands, or hiding under the hamper in his own private island of mystery.   

Yes, life is good with little Jacob around.  All he needs is a toy tiger to carry with him everywhere he goes!