Early Christmas Presents

Today I picked Jacob up from school and his teacher met me at the sidewalk with three bags in her hands. "These are his Christmas gifts.  One was a donation from a nearby church. The other two..." she shook her head apologetically. "He chose them. I swear!" She shrugged and rolled her eyes. 

I thanked her profusely for the gifts, and ushered my kids back to the car, thinking nothing more of the comment.

When we got home, Jake snatched the gift with his name on it and ripped it open before I could get it under the tree.  Nerf guns and candy.  No wonder he was excited! 

I peeked inside and furrowed my brows before pulling out a leather day-planner from one bag, and a hand-made tissue holder in the other.  I looked at my daughter, and she looked back at me, equally puzzled. 

Jacob stopped playing commando with his Nerf gun and walked over to me, took the day-planner,  and nudged it toward my chest, indicating it was for me.  Then he did the same with the tissue holder.  He smiled briefly before returning to his Nerf gun and taking off toward the cat making shooting noises.

I stared after him, then at the gifts. He picked those gifts out for me? 

My heart swelled as I thought back over the last four weeks of sneezing and runny noses because of my allergies to our new cat.  He'd often brought me tissue whenever I sneezed. Had he thought of me when he saw the tissue container at school?

But the day-planner? Maybe he saw the two calendars I have on the wall next to my desk or the shelf of tabbed folders for each project I'm working on. Or maybe he just associated it with books because I have hundreds of them in my bookshelf, along with binders for my mystery game business, novels I'm editing, or half-written novels I'm writing.

I don't know what was going through Jacob's mind when he chose those two gifts. But he was clearly thinking of me. 

For the briefest of moments, I realized there is much more going on in that little mind of his than I give him credit for.  Though he may still be non-verbal, he is very aware of us. Of me. Of his family, and all those he loves and cares about. 

As he drifted off to sleep tonight, I hugged him extra tight and thanked him for his gifts.  He held up his hand, dropped the middle two fingers, and signed "I love you" before rolling over and closing his eyes.

This year, I got the most amazing early Christmas gift: Hope.

Kindergarten? Already?? Where Has Time Gone?

How can it possibly be a year since my last post?  I know life has been crazy busy around here, but seriously?  I sit here scratching my head wondering where time has flitted off to and I'm ashamed.  So many wonderful stories I could of shared, but I haven't.  So, let me glaze over some of the highlights of the past 12 months. 

Speech:  Jacob is making progress.  Not as quickly as I'd like, of course, but there is progress.  He's beginning to say words like bunny, ball, bubbles, peaches, there is it, this, dad, juice, etc.  He is attempting to say prayers at night, and speech has progressed from learning sounds, to emphasizing words.  Do Jake and I have conversations? No.  But I can see marked improvements since last year, and I'm happy with them.

Physical Therapy:  Jacob has spent months in the pool with Craig, our physical therapist.  Not necessarily because Jake needs to learn how to swim (although he does), but because he is so incredibly strong, that the water is the only place that Jake doesn't feel comfortable. Craig needed Jake to learn to trust him and follow instructions before he could teach him anything. After several months in the pool, Jake has finally graduated to "dry land" and is now learning how to follow instructions rather than flopping on the ground and trying to overpower us.   Jake has calmed considerably in the last several months.  And, although he isn't perfect, I don't have to worry about him running into traffic any more either.  This summer was the first summer I didn't have to follow around behind him in the backyard for fear he'd try to climb the fence and run for the streets.  Thank goodness!  He is finally beginning to calm down and be a boy who follows instructions...about 30% of the time now. 

Our family has been on many adventures to places like the park, Yellowstone, go-carting, and other stuff.  

 We were sure Yellowstone would involve lots of running after Jake, or making him wear some sort of harness or leash, but he was perfectly happy holding someone's hands, or on our shoulders discovering with the rest of us.  It was in-cred-i-ble!!!

Is he perfect? Nope.  There are still days when he flops.  Okay, he flops just about every day.  But it's not all day, every day.  Now it's once or twice a day.

His personality is beginning to blossom too.  He loves to laugh, and play, and discover.  His  brain is always absorbing and learning; processing.  One of the most enlightening things I experienced as a mom was when I let him run free with the hose.  I never knew something so simple as a hose with running water would be so remarkable to Jake, but he played with it for hours.  Not just filling the kiddie tub, but spraying the dirt, and seeing the cause & effect of the water stream, and how changing the flow of water changed what happened to the dirt, or  how hard the water was when it left the hose.  He discovered how to make mud, made puddles in the grass and jumped, and how pouring water into the air conditioning fan made all the water fling back up into the air like rain droplets.

Bubbles were a big thing this year too.  He's mastered the wand, how to adjust this blows to make big bubbles and small bubbles. Catching them on the wand, etc. Bubbles are one of his favorite things to do. Oh, how I love to watch him learn and grow. And to be a little boy.

He LOVES his big brother, and spends as much time as he can with him.  They play a hunting video game and Jake helps him find the Moose, or Nate adds a hunting dog to the game that runs around on screen while they're walking and Jake loves to watch the dog and point at him.

I love watching Nathan signing to Jake during church, or wrestling with him on the living room floor, or even when he falls asleep next to him at bedtime.

These boys make my heart swell!  I am one lucky mama.

Jacob has changed so much over the last year.  Much too much to describe in one blog.  But I can tell you this much:  Kindergarten will be the year of CHANGE.

Sleep Apnea Sleep Study for Jake

At Jacob's last  check up with the pediatrician, she put in a request that he get a sleep study done because children with Down syndrome have a higher tendency to have issues with sleep apnea.

It took months for us to connect with the doctor, have our preliminary visit, then actually have the sleep study done.

I'd had no idea what to expect from the study, aside from the fact that Jake would be there all night long and they'd be monitoring his sleep patterns somehow.

We showed up at the hospital at 7 p.m. on a Tuesday night and met with the technician. She showed us to a room that looked very much like a hotel room complete with a queen sized bed, a couple night stands, and a chair in the corner.  There was a bathroom connected to the room, and a second room where I could sleep if I chose.  She pointed out the cameras that would be used to watch Jacob while he sleeps, then showed me all of the cables that would be attached to various parts of his body.

Jake was NOT impressed.  From the second she started trying to attach the cables to his body, he began fighting.  He'd kick, and scream, and yell, and push, and wiggle--anything he could do to keep them off his body.

We struggled for FOUR hours to get them on him, then to get him to lay down in bed, and to keep him from yanking the cables out of his hair and off his face.

FOUR HOURS.  I finally had to physically restrain him with both my arms and legs until he couldn't move, then wait for him to cry himself to sleep.  By the time he fell asleep at around 1:00 a.m. both he and I were a sweaty mess.

By morning, the technician verified that yes, he did have sleep apnea, and maybe I should get a sleep study done too.  Um, you'd sleep like a brick and snore too if you'd just fought Jacob for four hours.  That kid has stamina.  I'm just sayin...

I heard nothing for another six weeks, then finally hear from the pediatrician asking if we'd ever had the study.  I confirmed that we had and that we were waiting on results and were told it may take a few months to hear anything.  She was not impressed, so she made phone calls, and a referral to the ENT.

At his appointment this week, we were told that Jacob had obstructive sleep apnea and another form of apnea that affects his brain waves when he sleeps.  He will be getting his tonsils out shortly to help with the apnea since there is no way Jake will sleep with a CPAP machine.

The ENT said that once the tonsils were taken out, they normally do another sleep study.  I quickly informed him that there was NO WAY I was going to subject Jake to that study again. Not for a very long time.  He agreed when I told him the story and said that instead he'd do a follow-up with him after the surgery to make sure his airways are doing well.

Here's to hoping that will be enough, and we don't find ourselves in another all-night war of the wills!

Gemiini Update: Jacob's Speech is Progressing

This is my monthly post on Jacob's speech progression using Gemiini.

Admittedly, we haven't been using Gemiini as often as I'd like.  Jake's older sister had heart surgery three weeks ago, so our focus was on her for much of April.  However, whenever possible, I would sit down with Jake and go over the videos.  Plus, they have an app that we've downloaded that Jake can click on without requiring me to log into their system to watch the videos.  I've caught him several time with his Ipad watching those videos and making the sounds and signs to the words.

I've seen a lot of progression in Jake these last several weeks.  He's progressed from using signs and a series of grunts to babbling with consonants, and even trying to use words.  This last week he pointed to an object and said "there!" (which sounded more like 'dehyr', but whose complaining?), and last night he was doing the da-da-da thing.  What a leap from absolute silence. 4 1/2 YEARS we've been trying to get Jacob so say SOMETHING, and now it's happening.  Is it bad to say there are days I want to shed tears of joy at this development?

This morning we were on again.  He only managed to watch for 10 minutes, but he did all the signs, all of the sounds associated with the animals, and was attempting to say the words.  He'd either manage to say the beginning or the end, but not the entire word.  They're baby steps, but for me they are HUGE.  I have hope.  And there's nothing better in the world than having hope for your child and his ability to communicate.

We have an OFFICIAL logo!

Look at it.  Isn't it pretty?  My heart flutters and a tear forms in the corner of my eye when I gaze upon the fantastical wonderfulness that is...our official logo.  It's been four years in the making.  We've talked about DRL, and we've promised that it will actually come to fruition.  But today we scream from the rooftops: "We are alive!!"  Ok, maybe this is all a bit extreme to some.  But for me, it's a pretty big deal.  

I've talked about Down Right Living becoming a non-profit organization for so long, but have made no steps to do so.  Yeah, part of it is because Jake has had a few issues. Then Elisha and her  heart issues.  But in spite of it all, I've decided to push DRL to the top of my priority list and earnestly begin fundraising to make it happen.  I even have a business/marketing plan (gasp!)  I know, right?

Be afraid...be very afraid. 

Until then, if you'd like to help us reach our goal, we have a couple options for you.  

1) Donate outright through GoFund Me.  Donate to Down Right Living. Help us become a non-profit!

2)  Buy our T-shirts...or tank tops...or sweatshirts...(you get the picture) from us.  You can check out the options here: http://www.cafepress.com/sassysips2?nocache=yes

Every little bit would be appreciated.  None of it goes into our pockets. It goes directly into making DRL a non-profit and paying forward to those other families touched by Down Syndrome. 

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.

Visiting the Cardiologist

This week was heart week for Jacob!  It had been 18 months since he'd seen the cardiologist and they wanted to do a checkup to make sure his ticker was still working properly.

We had planed our echo cardiogram for 11:00 a.m and then were scheduled to see the cardiologist at 12:30.  I knew we were in for a loooong day - especially since it's a 30 minute drive to see the Doctor.  So, at 10:15 little Jake and I were off to see the doctor! I had a bag filled with books, treats, videos, and a mental list of things we can do at the hospital where the cardiologist is located (since we're so well acquainted with it from past years!)

We show up at the cardiologist and Jake hit full-blown flirt mode!  He made his rounds to each of the little girls in the waiting room, then started flirting with the ladies at the desk, poking his head around the monitors to grin at them and wave.

He was all giggles and smiles until he took one look at the echo room - the bed,the monitors, the machines.  He didn't even walk inside before he totally freaked out.

Now, I expected him to be less than thrilled about an echo, but it has been more than 3 years since his heart surgery, and he's only had 1 other weekend stint in the hospital since then.  A full on melt-down was not anticipated.  But he looked like he was have a serious case of PTSD or something.

I had to pick him up, wiggling and wailing, take of his shirt, lay down with him on the bed, and physically hold his arms, legs, head and body while the poor technician tried to echo his heart.  30 minutes later, the technician gives up, telling me she's gotten as much as she's gonna get on my son.

We leave the room, both Jake and I looking like we'd just run a marathon.  I wish I'd brought another change of clothes.  Gah!

We head out to the shocked faces of the ladies at the front desk and are informed that we have 1 hour before we can see the doctor.  Undaunted, I tell them I'll see 'em in an hour, and take my son out to roam the hospital.

We stop by the Ronald McDonald House so he can talk to Ronald and give him a hug, then we go to the fish hall to listen to the fish, and check out the city from the sky walk.  Then, we went and had lunch in the cafeteria - which was quite exciting because there was no high chair and Jake was still grumpy from his appointment.  So even the dessert wasn't interesting him that day.

Finally, an hour later, we find our way back to the Dr's office and are called back.  The poor nurse tries to check his heart but all of Jake's happiness is spent so he just keeps swatting her away and insists on climbing up giving himself googly eyes in the giant mirror next to the examination bed.  But the sweet woman takes it in strides and goes to find the Doctor.

He walks in all smiles and sass (have I mentioned I like this doctor?) and tells me he's been getting lots of comments about how Jacob is full of 'energy'.  Laughing, I agree that his description is the most politically correct way of saying he's crazy active today.

Jake was nice enough to let the doctor listen to his heart for a minute, but nothing else.


And the prognosis is:  He sounds GREAT!  There are no leaks or issues whatsoever!  We don't have to go back for THREE MORE YEARS!!


It was totally worth the 5 hours of hospital time to get the news.

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

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 :)

Are Those Words I Hear?

How can it be that it's been 4 MONTHS since my last post?!?!

Oh, that's right.  Life has a way of seeming to slip through your fingers at mock speed when you're the mother of four incredibly wonderful, but unbelievably different children.  Living life with an over-achiever 18-year old senior, a just-figuring-himself-out 14 year old, a precocious smarty-pants-wants-everyones-100%-attention 4-year old, and ever-curious-crazy-busy-wonderfully-delightful 3 year old sometimes takes its toll on me.  

But I wouldn't change a single minute of it for all the money in the world (don't quote me on that in the midst of the chaos though!)

Jacob is already 1/2 way through his first year of pre-school and the differences are startling to say the least.  Who knew that 2 1/2 hours per day, 4 days a week would make such a difference?  But boy howdy it has!

(Jacob's school picture)

Since school has begun, Jacob has finally begun to say words!!  I'm not saying he's speaking in full sentences or anything, but considering the fact that before pre-school we were lucky if he'd even make a sound, his attempts to vocalize are massive!

Although most of it would be considered merely grunts by the lay man (isn't that always the case when any child is beginning to speak?), he's been generous enough to accompany some of his words with their coordinating ASL sign as well.  Now Jake will not only wave good-bye, but say it as well.  As a fully intelligible word, mind you!  He also says "hi", "mom" (but only when he's mad and can't get my attention any other way), "Elisha" (sounding more like 'la la' - but I'll take it!), "Nate", "no", "dad" and my all time favorite: "three" - which is usually because he is COUNTING to three!!!! Woohoo! 

In addition to the awe-inspiring phenomenon we dub 'speaking' I've noticed that Jake has mellowed.  Yes, MELLOWED!  This is the little boy who wakes up and hits the ground running full-speed from area to area creating disaster faster than a Level 5 tornado.  If you take a moment and watch, one cannot help but marvel at his efficiency.  It's quite impressive, actually, how someone so little can create so much destruction in such a little time. 

This too, has diminished significantly over the last few months.  When we left Children F.I.R.S.T. one of the goals they had for him was to have Jacob sit at an activity for 3 whole minutes before losing interest.  To date, I have seen him "read" books, color, sit for an entire meal at dinner, and, as I write, he is sitting at the back sliding glass doors staring out at the newly fallen snow covering our back yard.  - Oops!  I spoke too soon.  He's now pushing his chair to the cupboards to see if he can pour the cereal out onto the floors!...and now into the living room where he's knocking off all the throw pillows (sigh).  OK, he's not PERFECT!  But his attention span (for things he's interested in) has increased from a minute or two to as long as 10 or 15 minutes for the truly engrossing activities. 

Yes, I would dub pre-school a success.  :)



(Our favorite family past time is listening to Jake laugh!  It's the best sound in the WORLD!)

Now...if I can only motivate myself to get him potty trained.....

An introduction to School!

It's hard to believe that our 'baby' Jacob turns three TODAY!

Turning three means many mile stones for our little boy. Not the least of which is the fact that he transitions from Children's First, the therapists he's been using since birth, to the care of our school district.

I've spent months fretting over the fact that my little boy will be picked up at our doorstep by a giant school bus, whisked into the arms of strangers, and off into an unknown school with new, much older and larger classmates.  It's been nerve wracking to me to allow my toddler to branch out into the big new world on his own. No longer will I be driving him to his therapies, signing him in, washing his hands, walking hand-in-hand to circle time, opening the door, and making sure he is settled before I scurry away to revel in my 2 hours and 15 minutes of relative silence twice a week.  Now, I will be waving to him from my porch as they lift him into the bus (he is too short to climb the stairs himself) and close the big glass doors behind him.  From the time he leaves my home until the time he returns into my arms, Jacob will be gone a whopping 4 hours and 15 minutes, four times per week.  Thursday will be his last day with everyone he's known all his life, and on Monday, he will be thrust into four times more work/play time than before.

Honestly, I've spent months freaking out about this scenario.  Finally, last Friday, I got the opportunity to go to Jacob's new school, meet his therapists and his teachers - at the Middle School.  Crap.  Really?  The middle school?

As soon as we hit the parking lot and I unstrapped Jacob from his car seat, he was pulling at my arms, trying to make it to the sidewalk.  His face lit up as if he knew where we were and he wanted to explore.  The second his tiny little feat hit the asphalt, he was in a run, heading for the sidewalk, which he stepped onto before running again.  I hustled to keep up with him, and herded he and his big sister through the entry way filled with glass doors.  He giggled loudly to hear the echo of his voice in the brick walls and linoleum landscape, causing several faces to turn to the source of the noise and break out into impulsive smiles at his infectious grin.  As we waited for our escort, Jake ran from chair to chair to pile of papers, to the window, then more papers, systematically exploring every square inch of this new space with interest.

Soon Shannon arrived with a grin on her face, only to be greeted with an excited grunt from Jacob.  He managed to obediently hold my hand until we were half way down the hall before all the brightly colored doors, lockers, and artwork got the best of him. He yanked his hand from mine and ran as quickly as he could, giggling and yelling with excitement with his big sister hot on his trail.

After a few moments, we managed to wrangle both children into the correct room.  When Jacob crossed the threshold into his new learning environment, he didn't even stop.  Instead, he increased his cadence from excited to hyper as he darted from toy to toy before settling on the items he preferred the most.

After almost an hour long meeting with the staff, it dawned on me that Jacob had been relatively quiet in his play and discovery time of the classroom.  Success!!

But it wasn't until it was time to leave and he was running away from me, tears streaming down his face because he didn't want to leave, that I realized that all those fears and concerns that had eaten away at me for the past several months were a waste of time.  Jacob is going to be juuuuuust fine.  The only thing that's going to upset him in this transition? Coming home to mamma.  :)