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.

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