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.

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!

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

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.