It's that time again - IEP Review! How is Jacob's Progress?

The last day of school before Spring Break, it was time to meet with all of Jacob's Therapists to go over his latest progression.

I'd just finished Courtney's parent-teacher conference, which took a whopping ten minutes, so I figured Jake's might take about twenty.  I left the building an hour later.  Whoa.  How do I forget how in depth these things are?

In their defense, most of the stuff I either already knew, because I was dealing with it at home, or it was positive.  There's just a whole lot of ground to cover when you need to review Jake's progress with four people instead of one.

For occupational therapy, they discussed how he's learning to button things.  I politely informed her that this was a skill I would NOT be encouraging at home, because Jake's inability to unbutton his shirts are the only reason why he is clothed AT ALL at home.  They laughed.  I did too. But I was serious.  That kid is like Houdini with his clothes.  Shoes off on the bus, pants off the minute he gets inside the door, and if I'm stupid enough to put on a T-shirt, that thing is off in 5 minutes or less.  Then I spend the next 5 minutes running after a seriously FAST 4-year-old boy as his laughter echoes off the stairwell while he escapes my reach.

Jake's occupational therapy is working! Look at that circle!

Next, we talked about how Jake has gotten pretty doggoned good at drawing circles, but they're still working on the cross shape.  I agreed.  I informed the ladies that you know you're a parent with a special needs child when you look at the walls ready to scream, but stop when you see a perfect circle drawn on your wall in sharpie and marvel at how beautiful it is (thank goodness it was in the laundry room!).

The physical therapist told me how Jake is getting better at following directions.  When he first started with them, they'd go into the gym for PE and he'd stare off at the walls marveling at the giant mascots painted on the walls.  Now he will sit, participate, and pay attention.  I agreed.

 Picture courtesty of  Geri @ EACAP

Jake's ability to follow instruction (better, but not perfect) is the one aspect of his development I'd noticed the most in the past several months.  When we started at the school, we were expected to wait outside by the street for the bus to arrive, which wound up being 5-10 minutes of me either grabbing him to keep Jake from running into oncoming traffic, or holding his flailing body because he wanted to RUN!  Now, he and I will stand in the driveway and play.  He knows that the road is off limits and that he needs to stay on the driveway until the bus stops and the doors open.  It makes the bus portion of school so much easier on me now that he can follow instructions and knows some basic rules.

Picture courtesy of Geri @ EACAP

Speech therapy was the most entertaining, though.  It seems that Jake likes to pick his favorites and his least favorites.  With his least favorites, I swear he knowingly and willingly makes their lives miserable all day, every day.  At Children FIRST, it was poor Shawn, Jake's Physical Therapist.  I adored her, but for some reason, Jake was stubborn as stubborn can be.  She would often talk about Jake's Downsitude (Down syndrome attitude).  And it is TRUE.  That boy is stubborn beyond belief.  I know ultimately that stubbornness will enable him to persevere as an adult.  As a child, it's annoying as HECK.    Back to the story....Jake's speech therapist is his new focus of his "Downsitude".  He won't enunciate anything for her, or even make a sound.  I tell her about what he's doing at home, and her eyes get wide.  "He's not doing that here."  Figures.  Jake can be such a goober sometimes.

Picture courtesty of Geri @ EACAP

And, just to make his point, as we were leaving his meeting, I asked him to say "bye" to the ladies, so he turned around, waved his hand and said, "bye-bye", which was met with several squeals from the ladies as he walked out the hall and out the door to celebrate a 1-week spring vacation from school. :)

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!

Love and Intuition - Jacob Style

I don't know what it is about my boys.  But I am truly blessed.  

My girls are pretty freakin' awesome too.  Elisha is uber talented in EVERYTHING she does.  It's kinda disgusting, actually.  And I'm her mother.  She plays Division 1 Track - 4 events, was offered college scholarships in music and volleyball as well, is a truly phenomenal artist, is beautiful, smart, funny, sweet, caring, and dynamic.

Her 5-year-old sister is her mini-me.  Her goal in life?  To rule the world by the time she's 10.  She may actually do it.

But with all the talents my girls have, my boys have in equal amounts of intuition and love.  I'm not saying that they're stupid or ugly.  Quite the opposite, in fact.  Nate has a near photographic memory. And you've seen the pictures in other posts.  My family was not hit with an ugly stick (thanks to their father's genetics). But the qualities I cherish most in my boys is their concern for others and their laid-back attitude.

My girls? Well you don't get to rule the rule by sitting back and doing nothing.  My girls are a bit high-strung  which is why they're over achievers.  It's go go go all the time.  Courtney never shuts up.  Ever.  It's question after question after question as her little mind absorbs as much information as is humanly possible for a 5-year old.  Elisha is working her butt off at college from 7 a.m. till 11pm most nights, and still finds time to come home on the weekend to be a big sister to the youngers (Jake and Courtney).

Nathan and Jake.  Well, they just know.  Nathan is a watcher.  He observes and absorbs.  Jacob explores and discovers.

Up until today, I just considered Jake inquisitive (that's a very nice word for 'the little boy gets into virtually everything in our house'. He takes it apart, tries to put it back together, gets frustrated, throws it on the floor and moves on to something new while I try to pick up after him - over and over and over again).

Today was not a good day for me.  I somehow pinched a nerve in my shoulder rendering one arm useless, then proceeded to get a nasty migraine that had me pretty much incapacitated for the entire day and well into the evening.  Throughout the day, as I was laying on the couch nursing the pain in my body, Jake would come hang out with me.  He'd bring his tablet and sit on me and quietly play.  If I managed to pull myself up to a sitting position, he'd sit on my lap.

By 6 pm I decided to try to sleep some of the headache away while the olders (Nate and KC) watched the youngers (Courtney and Jake).  I was in my pitch black room 5 minutes before Jake cracked open the door and snuck in, closing the door behind him.  He climbed up on my bed, laid down next to me, and cuddled quietly in the dark next to his sick mother, putting his hand on my face, then petting my hair, trying to comfort me.

It was the sweetest thing!  My adorable 4-year-old son was trying to take care of his sick mom.

He stayed in the pitch black room with me for another 20 or 30 minutes before he walked out, got my Iphone, came back in, and watched Madagascar next to me (still in the dark) and held my hand.  He stayed next to me until it was his bed time, which wound up being him cuddled up next to me until he fell asleep for the night.

After a night like tonight.  No one can tell me that having a child with Down syndrome is a trial.  No one.  Nuh uh.  Jacob is not lucky to have me as a mother.  I  am lucky to have Jacob as a son.