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

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.

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.