Growth Spurt!

Oh my goodness!  My child is growing. 

Whomever said my child was going to be small because he has Down syndrome had no idea what they were talking about!

Jacob is 18 months younger than his sister, and already weighs more than her.  Okay, in her defense, she's still a foot taller than him, but Jake is a TANK.

You wouldn't know it if you saw him.  But the child is dense.  Somewhere underneath that belly of his, there's a six-pack. Maybe a 12-pack!

Since he finished school in June of last year, he has grown FOUR SIZES.  That's not a typo. Four sizes.  He finished school a 4T last year.  He is now outgrowing his 7's.  Well, sort of.  His waist is too big for the 7's, but the pant legs are about 3 inches too long.

When I put him in 6X's, the pants would be obscene if he weren't still in diapers, but the legs are just the right length.  But that's alright. They match perfectly with all his muscle shirts!

So this week, I'm buying him a whole new wardrobe (again), and breaking out the sewing machine to hem up all his pants.

I guess in the grand scheme of things, a growth spurt (or three) is a good thing, right?

My Son Has Low Muscle Tone, But He's Strong as an Ox!

When Jacob was born, I read a bunch of the literature on what to expect.  Most of it depressed me, quite frankly.  I didn't want to know that Jacob had a increased risk of this or that.  I wanted to know what to expect in terms of development, and what virtually every child of Down syndrome had in common.

I quickly discovered that, like typically developing children, those with Down syndrome develop and grow at different rates, have different difficulties, and varying types of cognitive abilities.  However, one attribute, which appears to be across

the board for children who have Down syndrome is their low muscle tone.

Originally, I thought that meant Jacob would be weaker than typically developing children.  BOY was I wrong.  In fact, it was the exact opposite.  How is it that a a child, with an un-correct AVSD heart condition needed THREE nurses to hold him down for IV's?  Then there's the walking.  That happened at 13 months.  Where's the delay in that? And aside from a slight delay to catch up from being immobile the first 3 months of his life, Jake quickly built up steam and now exceeds nearly all physical expectations for kids his age.

And now that Jacob is 6 1/2, I'm forced to begin weight training because he is just about stronger than me.  Scary, huh?

So, low muscle tone does NOT mean weak muscles.  Then what does it mean? For a more detailed explanation, you can go to Wikipedia. They're the most straight forward and comprehensive. Essentially it means hyper-flexibility, and (sometimes) weak muscles, or muscle resistance.  For Jacob, it's TOTALLY hyper-flexibility.

Jacob's preferred position to sleep is folded in half, laying on his legs, occasionally sucking (or biting on his toe nails). Sadly, I don't think I've ever cut his toenails (please don't gag. I've done enough of that for all of us).

On the bus, Jacob wears a harness that has 2 straps for his feet, a vest that goes over his shoulders, and zips in back.  He's managed to slide out of that thing too.

He's slid out of his 5-point harness on his car seat (don't get me started on that one!), out of my arms if he's throwing a tantrum, or wedge himself into a drawer or a tiny cupboard.  I can't tell you how many times I've run through the house frantically calling his name, to find him grinning from ear to ear because he'd successfully hid from me. Sigh.

My boy is Houdini.  He can get out of EVERYTHING. If he were in a straight jacket, he'd find a way.
Luckily, he spends a lot of time in PT and OT, learning to strengthen his joints and his core.  Heaven knows, the rest of his body doesn't need to be any stronger.

Needless to say, this little boy keeps  me, and the rest of our family, on our toes!  Good thing we learned fast that low muscle tone does not equate to weak muscles, or any excuse to treat our child any differently from the rest of the kids in our home.

If anything, Jake's low muscle tone gives him an advantage.  Sometimes it's like the kid has four arms - quite handy when he and his 17-year-old brother are wrestling in the living room.  Or his hands are full, and he needs a little extra leverage with something he's playing with.

Never a dull day with Jacob around.  Never.

Wrist Wraps: The Unexpected Solution to Sensory Issues

So I went through a phase several months back when I was doing a lot of product testing.  Companies would send me their products, I test them out, then I'd blog, Tweet, or Instagram about whatever I was using.

For the most part, most everything was good.  Occasionally, I'd find something so wonderful I'd buy more when I ran out.
One  of those unexpected items were wrist wraps (If you go onto Amazon you can find the for under $10).  If you don't lift weights, you probably don't know what they are. But the concept is simple.  It's a thick elastic band, much like an ace bandage, that wraps around your wrists and Velcros at the end.  It's designed to strengthen your wrists when you're lifting heavy weights.  Since my kids are big into lifting because of sports, I decided to get a pair of wrist wraps.

Lo and behold, little Jacob got a hold of my wraps and LOVES them!  I think it's a sensory thing for him.  He'll put them on and take them off several times a day.  At first he needed my help, but now he can pretty much do it all by himself.  He wraps the elastic around his forearms as tight as he wants it, then runs around the house doing his thing until he decides he's done and takes them off.

I figured after a day or two he'd be tired of the novelty. But it's been nearly 6 months now, and he still pulls them out and wraps his arms.

I'm finding he also likes having the weight of my arm over him while he sleeps, and I've heard them talk about getting him a weighted lap blanked for school to see if that will help settle him down.

I guess the moral of this story is: As a parent of a special needs child, I must always think outside the box.  You never know what your child will find beneficial.

FINALLY....an Explosion in Speech!

For anyone who has followed me, or my journey with Jacob, you know that speech has been one of our biggest struggles.

Getting ready to go to speech therapy! 

Not only is he getting 30 minutes of speech at school each day, but he has another 30 minutes per week at a private agency.

Jacob's progress has been excruciatingly slow.  But there's been progress, nonetheless.  When he started at Youthful Horizons, he was essentially mute.  He didn't even grunt much.  We had him using Geminii system, but he got bored quickly.  And I think that's because the Geminii system is geared more towards people with Autism.  There was very little emotion in the programs, and it relied heavily on repetition.  All good things, don't get me wrong.  But he was bored. So we topped out on his progress pretty quickly, then backslid for a while. And, at $99/month for the program, we couldn't afford to keep using something that wasn't working.

About that time, we found Debbie at Youthful Horizons She and Jake have been an awesome fit.  She's mellow, nice, and she has all the best toys--at least Jacob seems to think so!

I've learned to appreciate the process of learning to talk.  First there is learning to push out air forcefully enough to make noise. Then you must learn to control your muscles enough to manipulate your lips enough to create specific sounds. And don't forget about placement of the tongue, jaw, and awareness of the cheeks, face, and other muscles.  All of these things had to be addressed in proper progression, while concurrently teaching him other means of communication via the PECS system and more sign language to enable communication RIGHT NOW.

Jacob is nearly 6 1/2 now.  Sign language is still his primary language, but now he's added a few words to his vocabulary.  He can say things like purple, bye, dad, mom (pronounced ba), Elisha (pronounced uheesa), he calls Courtney (seesa), bus, please (pronounced psss), blue (boo), there it is, that, dog, Craig (his PT), and occasionally, when he's in a good mood, I'll here his say Debbie.  13 words and 1 phrase. 

I'll TOTALLY take it!

And on those days when I'm frustrated that he still prefers to yell rather than use his words, I remind myself that we couldn't understand his older brother (who is normally functioning and actually quite smart) until he was 12! 

Patience, grasshopper.  Patience.

Boo Boos and Buses

Today is a short entry...thank goodness.  

It's not my favorite, but it's part of life. 

Yesterday was picture day at the school.  Wahoo!  It's always fun to see how much Jake has changed from year to year.  

He chose out his own shirt, we put mousse in his hair to keep the cowlicks at bay, and he was stylin' by the time we were outside waiting for the bus.  

Three minutes before the bus was to arrive, as luck would have it, he was running up the driveway and tripped.  This isn't one of those oops-I-tripped-now-I'm-going-to-get-back-up kind of trips.  Oh no.  Not my Jake.  It was more like a trip over your own feet, skid for 3 feet, and check to see if any teeth are missing kind of trips.  

When the bus arrived, I had a white washcloth that had blood all over it, my T-shirt was bloody, and I was still picking debris out of his mouth from the roadway.  Plus, he had a road rash the size of a silver dollar on the bottom of his chin.  Yeah, school pictures are gonna be fantastic this year.  Not. :|

On the upside, Jake is beginning to really start babbling.  I'm hearing tons more consonants coming out of his mouth, and he's trying to say entire phrases (yes!!!!!).  This morning it was "I did it!" and this afternoon, he said "buh..." as a school bus drove by.  I squealed.  It's the little things when it comes to speech for him.  And progress is still progress.  It's great to finally see some coming out of his mouth!

But, of course, we couldn't leave this little entry on a good note.  Because it's important to see that Jake is multifaceted.  He's smart, he's feisty, he's funny, he's clumsy, and...he's a runner.  

Today when the bus came (and I silently celebrated a no-trip day), I walked four steps to get his back pack.  I kid you not.  FOUR steps. In those four steps, he decided that standing still was not enough.  After all, he saw the bus and he wanted to get on!  So when I turned my back, he put on the gas, and ran out into the middle of the street to great the bus.  GAH!!!!  I don't think I've ever ran so fast as I did trying to drag him from the middle of the road.  Luckily, the bus was still 1/2 a block away and she slowed the second she saw him step foot on the street.  But it's scary nonetheless.  And the driver and her aid had a good laugh about the situation - thank goodness!

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. 

The Holy Grail of Speech Therapy - Gemiini.org

For those of you who know me, or have spent any significant amount of time with Jacob, you know that at nearly 4 years old, he is still pretty much non-verbal.  No seriously.  Not a word.  Barely a syllable.  Or a SOUND.

For a child who is at, or above age in nearly every other aspect of his development, his speech has been the bane of my existence.  

Now, don't get me wrong.  The boy communicates JUST FINE.  He just doesn't talk.  He nods and shakes his head for yes and no, uses several dozen signs, grunts or screams when he wants my attention - depending on where in the house he is in relation to me, and he will come, grab my hand, and direct me to anything he wants - pointing to the offending object.  

But me, being the crazy stickler that I am, insist on wanting him to talk.  I understand how important speech is to his development, and his ability to communicate with the general public as he grows.  In my book, stubbornness and laziness are not a good enough reason not to talk. 

I have worked tirelessly with the speech therapists over Jake's little lifetime to get the boy to say something. And on occasion, he will get excited and say a word or two, but never anything consistently.  Why go through the hassle of talking if you can communicate just fine in other ways, right?  Gah!

In my quest to find a way to get the little boy to talk, I stumbled across a website called Gemiini.org.  I think I talked about it on a previous post and said I'd follow up.  Well guess what.  I'm following up.  Because the program is FREAKING AWESOME!

In the 3 weeks since we started Gemiini, Jake has progressed more than he has in nearly all of his lifetime.  Seriously.  No joke.  (I am not being paid or compensated in any way for this review, by the way). 

So, after 2 weeks, I began to notice that Jake had picked up on several of the new signs (animals) shown on the videos.  I also noticed that he was starting to try to say some of the words. This is HUGE for me.  Because up until now, he wouldn't even try to talk. 

Now, 3 weeks later, I can actually discern a couple of the words he is learning as he watches the videos.  What's even more important than the fact that my little boy is trying to talk, is the amount of noise coming out of his mouth!  Jake has gone from a few occasional grunts, to babbling constantly.  He's working those mouth, cheek, and tongue muscles, which for those who don't have children with Down syndrome, is a BIG thing.

Children with Trisomy 21 are notorious for having big tongues and low muscle tone in their mouths.  So the babbling is a HUGE step.  And an important step in the speaking process.  Think about it.  Non-Trisomy 21 kids start out babbling before anything truly coherent comes out of their mouth.  Which means Jacob has taken the next step in speech development and is well into the beginning phases of speaking.  Wahoo!  Can you tell I'm excited? :)

So, are there any cons about Gemiini?  I only found two things that gave me moment to pause.  First off, it's kind of expensive.  At $50 - $90 per month, I balked a bit.  But it only took me a few minutes to talk myself into the price tag.  Specifically because Jacob's speech is so doggoned important to me.  Secondly, because Gemiini has a sliding pay scale, and third, because this was the expense I decided to use Jake's Developmental Disabilities reimbursements on for the year.  To me, Jacob's speech is the single most important factor in his development right now.

Secondly, the videos are a bit hokey.  With that being said, Jacob DOESN'T CARE.  He's 3 1/2.  He doesn't care about the quality of the video.  He just likes looking at the pictures of animals, and talking to the older kids on the videos.  There are no bells and whistles to the videos, and it did, admittedly, take a week or so for Jake to sit still long enough to get anything from the videos.  But I sit him down in front of the computer at breakfast and let him watch the video while he's eating and it seems to work just fine. In fact, now he gets pretty excited when I turn it on.  So, does it really matter?  No.  

Plus, we're only talking 10-15 minutes of video per day.  It's not very long.  His attention span can't handle much more.  

So, in a nutshell:  Gemiini.org.  Worth the investment?  Absolutely.  I'd recommend it to everyone.  

I'll keep you posted on his progress!!!

UPDATE (03/16/15)  We're finally back onto Gemiini!  Check out our latest post: http://upsanddownsoftheallreds.blogspot.com/2015/03/update-on-gemiiniorg-its-been-long-time.html

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!