Kicking, Biting and Spitting: What I'm Doing To Combat the Combatant

I've had difficulty the last several months with a new development.  Kicking, biting and spitting.  This has been so much of a struggle, that I've called in behavioral specialists, and DD Services has moved his respite care from 0 hours last year, to 58  hours/month this year (Jake was throwing the mother of all tantrums at the time of his assessment. I'm not sure if that's good, or bad).

This problem has escalated since he started kindergarten, which is a class consisting of seven other kids with developmental disabilities and three para-educators (assistants).  As best as I can tell, Jake is the youngest, and the others range into the 2nd or 3rd grades.

The teacher is new, and highly motivated (thank goodness!), but she is also inexperienced (bless her heart).  I like her. Her heart is in the right place. But there is much trial and error going on in the class.

I've shown up to get Jake for his therapies, and the poor woman is flushed and frazzled.  Once, I came in and the room was annihilated - someone had literally cleared the shelves all over the floors.

Sadly, Jake is beginning to pick up on some of these behaviors and bringing them home.

We contacted a behavioral therapist and had a (sort of) consultation.  However, he wanted the entire allotment of Jacob's DD money $1200 to be used for behavioral services.  Um, I'm sorry. There are BOOKS on behavioral therapy (of which I will be buying - I'll blog about that later, I'm sure). Plus, he approach to dealing with Jacob is to wait his tantrums out, or offer him something that he wants more.

Okay, let me make something clear. I have FOUR children. I am not willing to let Jacob rule my world and dictate when and where I will do things.  I have absolutely no problem taking the time to teach him to behave properly, or what acceptable behavior is, but ALLOWING him to continue with his tantrums, and making the rest of us revolve around him is not acceptable to me. And it does him no favors in the future. It only teaches him that tantrums are acceptable ways of expressing frustration.

So, we've been working with the OT, PT, Speech, and the teacher at school to figure out the best way to work with him.  I suspect that some of this is due to his frustration that he can't communicate his wants and needs properly, and it will go away once he can speak a little better.  Other things are learned from the older kids at school.  And still others are from his innate stubbornness.

For now, I'm doing the following, though I'm sure this will be tweaked as I figure out what works and what doesn't:

1)  Try to spend more quality time with him than I have in the past.  Primarily, this is so he understands that good behavior means he gets lots of attention.  Bad behavior means time outs in his room or on the couch, without the attention he craves.

2) When I'm with him, we try to unplug. From everything.  No cell phones, no TV, no music.  I limit the amount of sensory input he can get.

3) Lots of physical play. Jake seems to respond well to physical activity.  The teachers say he behaves better in school after PT and OT sessions. He starts swim lessons tonight, and we're actively working on getting him to the park and going outside to play.

4) Quiet time. He's beginning to sit still long enough for us to read books. So, I'm encouraging that too.

5) I'm working out. This kid is STRONG!  His behavior isn't going away anytime soon, so I'm taking action to be able to handle him better.  The moment he gets stronger than me, I've lost that battle.

6) Taking breaks (Respite). I'm totally utilizing the respite care.  Luckily, my oldest is 21 and wants to be an Occupational Therapy Assistant, so she'll be the respite care. But we've agreed to let him go over to her house twice a month on the weekends so that our family can have a break. We love Jake to death, but taking care of a child with Ds is hard. And it's important for the other kids to remember what life as a normal kid is like, and to enable us to give them their much-needed attention too.  

Kindergarten? Already?? Where Has Time Gone?

How can it possibly be a year since my last post?  I know life has been crazy busy around here, but seriously?  I sit here scratching my head wondering where time has flitted off to and I'm ashamed.  So many wonderful stories I could of shared, but I haven't.  So, let me glaze over some of the highlights of the past 12 months. 

Speech:  Jacob is making progress.  Not as quickly as I'd like, of course, but there is progress.  He's beginning to say words like bunny, ball, bubbles, peaches, there is it, this, dad, juice, etc.  He is attempting to say prayers at night, and speech has progressed from learning sounds, to emphasizing words.  Do Jake and I have conversations? No.  But I can see marked improvements since last year, and I'm happy with them.

Physical Therapy:  Jacob has spent months in the pool with Craig, our physical therapist.  Not necessarily because Jake needs to learn how to swim (although he does), but because he is so incredibly strong, that the water is the only place that Jake doesn't feel comfortable. Craig needed Jake to learn to trust him and follow instructions before he could teach him anything. After several months in the pool, Jake has finally graduated to "dry land" and is now learning how to follow instructions rather than flopping on the ground and trying to overpower us.   Jake has calmed considerably in the last several months.  And, although he isn't perfect, I don't have to worry about him running into traffic any more either.  This summer was the first summer I didn't have to follow around behind him in the backyard for fear he'd try to climb the fence and run for the streets.  Thank goodness!  He is finally beginning to calm down and be a boy who follows instructions...about 30% of the time now. 

Our family has been on many adventures to places like the park, Yellowstone, go-carting, and other stuff.  

 We were sure Yellowstone would involve lots of running after Jake, or making him wear some sort of harness or leash, but he was perfectly happy holding someone's hands, or on our shoulders discovering with the rest of us.  It was in-cred-i-ble!!!

Is he perfect? Nope.  There are still days when he flops.  Okay, he flops just about every day.  But it's not all day, every day.  Now it's once or twice a day.

His personality is beginning to blossom too.  He loves to laugh, and play, and discover.  His  brain is always absorbing and learning; processing.  One of the most enlightening things I experienced as a mom was when I let him run free with the hose.  I never knew something so simple as a hose with running water would be so remarkable to Jake, but he played with it for hours.  Not just filling the kiddie tub, but spraying the dirt, and seeing the cause & effect of the water stream, and how changing the flow of water changed what happened to the dirt, or  how hard the water was when it left the hose.  He discovered how to make mud, made puddles in the grass and jumped, and how pouring water into the air conditioning fan made all the water fling back up into the air like rain droplets.

Bubbles were a big thing this year too.  He's mastered the wand, how to adjust this blows to make big bubbles and small bubbles. Catching them on the wand, etc. Bubbles are one of his favorite things to do. Oh, how I love to watch him learn and grow. And to be a little boy.

He LOVES his big brother, and spends as much time as he can with him.  They play a hunting video game and Jake helps him find the Moose, or Nate adds a hunting dog to the game that runs around on screen while they're walking and Jake loves to watch the dog and point at him.

I love watching Nathan signing to Jake during church, or wrestling with him on the living room floor, or even when he falls asleep next to him at bedtime.

These boys make my heart swell!  I am one lucky mama.

Jacob has changed so much over the last year.  Much too much to describe in one blog.  But I can tell you this much:  Kindergarten will be the year of CHANGE.

Sleep Apnea Sleep Study for Jake

At Jacob's last  check up with the pediatrician, she put in a request that he get a sleep study done because children with Down syndrome have a higher tendency to have issues with sleep apnea.

It took months for us to connect with the doctor, have our preliminary visit, then actually have the sleep study done.

I'd had no idea what to expect from the study, aside from the fact that Jake would be there all night long and they'd be monitoring his sleep patterns somehow.

We showed up at the hospital at 7 p.m. on a Tuesday night and met with the technician. She showed us to a room that looked very much like a hotel room complete with a queen sized bed, a couple night stands, and a chair in the corner.  There was a bathroom connected to the room, and a second room where I could sleep if I chose.  She pointed out the cameras that would be used to watch Jacob while he sleeps, then showed me all of the cables that would be attached to various parts of his body.

Jake was NOT impressed.  From the second she started trying to attach the cables to his body, he began fighting.  He'd kick, and scream, and yell, and push, and wiggle--anything he could do to keep them off his body.

We struggled for FOUR hours to get them on him, then to get him to lay down in bed, and to keep him from yanking the cables out of his hair and off his face.

FOUR HOURS.  I finally had to physically restrain him with both my arms and legs until he couldn't move, then wait for him to cry himself to sleep.  By the time he fell asleep at around 1:00 a.m. both he and I were a sweaty mess.

By morning, the technician verified that yes, he did have sleep apnea, and maybe I should get a sleep study done too.  Um, you'd sleep like a brick and snore too if you'd just fought Jacob for four hours.  That kid has stamina.  I'm just sayin...

I heard nothing for another six weeks, then finally hear from the pediatrician asking if we'd ever had the study.  I confirmed that we had and that we were waiting on results and were told it may take a few months to hear anything.  She was not impressed, so she made phone calls, and a referral to the ENT.

At his appointment this week, we were told that Jacob had obstructive sleep apnea and another form of apnea that affects his brain waves when he sleeps.  He will be getting his tonsils out shortly to help with the apnea since there is no way Jake will sleep with a CPAP machine.

The ENT said that once the tonsils were taken out, they normally do another sleep study.  I quickly informed him that there was NO WAY I was going to subject Jake to that study again. Not for a very long time.  He agreed when I told him the story and said that instead he'd do a follow-up with him after the surgery to make sure his airways are doing well.

Here's to hoping that will be enough, and we don't find ourselves in another all-night war of the wills!

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.

We have an OFFICIAL logo!

Look at it.  Isn't it pretty?  My heart flutters and a tear forms in the corner of my eye when I gaze upon the fantastical wonderfulness that is...our official logo.  It's been four years in the making.  We've talked about DRL, and we've promised that it will actually come to fruition.  But today we scream from the rooftops: "We are alive!!"  Ok, maybe this is all a bit extreme to some.  But for me, it's a pretty big deal.  

I've talked about Down Right Living becoming a non-profit organization for so long, but have made no steps to do so.  Yeah, part of it is because Jake has had a few issues. Then Elisha and her  heart issues.  But in spite of it all, I've decided to push DRL to the top of my priority list and earnestly begin fundraising to make it happen.  I even have a business/marketing plan (gasp!)  I know, right?

Be afraid...be very afraid. 

Until then, if you'd like to help us reach our goal, we have a couple options for you.  

1) Donate outright through GoFund Me.  Donate to Down Right Living. Help us become a non-profit!

2)  Buy our T-shirts...or tank tops...or sweatshirts...(you get the picture) from us.  You can check out the options here: http://www.cafepress.com/sassysips2?nocache=yes

Every little bit would be appreciated.  None of it goes into our pockets. It goes directly into making DRL a non-profit and paying forward to those other families touched by Down Syndrome. 

Adoring Daddy

The last several months have brought about subtle, yet significant changes in Jacob.  I don't know if it's because he's actually changing, or if, because of all the things going on with Elisha, I've begun to notice and appreciate the little things in life.

The biggest thing, for me, has been how Jacob has changed from being completely self-involved, to slowly incorporate others into his list of concerns.  In the past, Jake would run from activity to activity, with me in his wake trying to keep up.

 But now, he tends to want me to be a part of his adventure, searching me out so that he can grab my hand, and pull me with him to discover the flowers growing outside, or to watch his favorite show, or to practice Gemiini together.

The other week, however, it truly hit home as our family went to play tennis for the first time this season.  K.C. piled me, Nathan, Courtney, and Jacob in the car and took us to the high school's tennis courts, which (thankfully) have a very high chain link fence with gates that latch closed.  This allowed me to not worry quite so much about Jacob and gave him the impression of freedom to run as he chose.

I very much expected him to run through all of the tennis courts, chasing after balls, gleefully playing and exploring by himself.  However, this night, he stayed pretty close to his daddy's side.

K.C. offered him a tennis racket, which Jacob wheeled with pride, teetering from side to side as he tried to compensate for the extra weight, and grinning from ear to ear.  He'd stand right next to his dad, trying to mimic his stance, looking up occasionally to make sure he had his legs and hands right, then swinging at any oncoming balls within 5 feet of him.

Nathan would toss a ball over the net, and Jacob would grin, run after it, swing-- usually missing, and run after the ball.  Once the ball was retrieved, he'd run back to his dad, hand it to him, and 'assume the position', taking great care to mimic KC's stance.

It was absolutely adorable!  What a heart-warming experience to see Jacob and KC playing together, and having fun.  In a life full of chaos and running to and fro, it's a tender moment, that makes me smile, even now, in retrospect.

Those are the moments worth living for.

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. :)

A random story about Jacob

 *All names, locations and information was made up to protect the innocent*

Once upon a time there was this little boy named Jacob. 

He had 3 big brothers and sisters who always seemed to have fun.  Jacob wanted nothing better than to run and play with his brothers and sisters. 

But because he was so little, he was often left behind.  

Poor Jacob.  He was so sad.  Being little was nooooo fun. 

One day, little Jacob decided he wasn't going to stay home any more.  

So he filled his backpack with goodies, and decided to go on an adventure of his own. 

During his travels, he want to the botanical gardens,

National Forests,

And even the grasslands of Africa.

Every day was an adventure for this little fellow. 

After traveling the world, little Jacob decided it was time to go home.  

He packed up his bags, and made the long journey back to his family.

His big brothers and sisters greeted him with open arms and told him how important he was to the family.  They had missed him soooooooo much!  Jacob never realized how important he was to his family, and decided that he would save the rest of his travels for another time when he was much much older.  

The End!

P.S. ~ This was just an excuse to showcase some of my favorite Jacob pictures from the last couple of weeks :)

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.