Will He Ever Sleep Through the Night?

Today I am utterly exhausted.

I know, part of that is my fault. I stay up until midnight at the very least, often until one thirty in the morning, writing.  My personal time doesn't begin until after nine in the evening, and I use it to recharge in a variety of ways.

But I also stay up late because I know Jake will be up at least twice before midnight, and I don't like the idea of him roaming the house without anyone supervising him. 

We have a system right now.  I'll stay at my computer writing and he will get up at ten and midnight to get a drink, then I will put him back in his bed.  It doesn't matter if there's water in a cup (or twelve cups) right next to his bed within arm's reach.  He still gets up and searches for me.  I've tried ignoring him and letting him sleep on the couch, instructing him from my chair, tucking him in and singing a song, and getting angry.  None of it will keep him from getting out of bed. Sigh.

Recently, he's also taking a pit-stop in the bathroom, which is exciting for us who have been potty training him for like FOUR YEARS now.  He's becoming aware that he needs to pee in the middle of the night.  Baby steps.

Once I go to bed, I cross my fingers and hope he doesn't get up.  Locking him in his room is frowned upon. And I have a lock on our front door that is similar to the hotel locks at the top.  It's kept him inside thus far.

Usually, he'll come crawl into bed with me sometime between two and four in the morning, and I spend the rest of the night with his face pressed next to mine, and him breathing on my face.  Drives me crazy.  And I sleep horribly.  Most days I'm a walking zombie and I try to squeeze in an hour's sleep toward mid-day. 

But he's seven and a half now.  I'm getting tired of him sleeping in my bed (and so is my husband!). We've tried weighted blankets, different pajamas - and no pajamas.  Making his room cold, music, white noise, fans, and other things. 

Now, we've completed our third sleep study and are meeting with the neurologist to get him fitted for a c-pap machine for sleep apnea.  I have NO idea how I'm going to get him to sleep with the thing on, but I'm desperate!  I'm crossing my fingers and hoping it keeps him asleep.  Because I don't know how much longer I canzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Birthdays and Buddies

What a crazy busy week it's been!

Jake had is fourth birthday on Saturday (Wahoo!) and it was surprisingly low-key.  What I love about this age is that there are no real expectations from the little ones.  He didn't care that I bought him a cake.  He didn't care that the gifts never actually got wrapped - he liked playing with the bags for days afterwards.

He LOVED the car we bought him.  It had buttons for him to push that created sounds and flashing lights on the top of the hood, then the car moved forward - fast if he was on the linoleum.  The sounds drove the rest of the family crazy, but I think that was part of the mystique for Jake.

For quiet times, we bought him several small dump trucks, front loaders, bucket trucks, etc.  They're perfect for the palm of his hand and he can carry them anywhere, which is a bonus for him.

And, of course, a magic microphone to help encourage his speech.

Like I said: Low key, but nice.

Tuesday we dressed him up in his knight costume and the little ones went trunk or treating at our church.  He's been munching on candy all week.  I will be soooooooo happy when the candy is gone!












And yesterday, I got to see Josh, Jake's NICU buddy - also with Down syndrome, who was born the day after Jake.  Josh and his mom came to town and we got to spend a little over an hour catching up with one another as Josh had his monthly chemo and check-up.

I am so lucky to know Marla and Josh.  Not only because they're a great family, but how many people have the opportunity to have a child nearly the EXACT same age as your own to kind of guage things off of?  I can look at Josh and realize that he's a much better talker than Jake, but Jake is taller and bigger (probably due to genetics and the drugs from the cancer).  Both of us are going through potty training right now, and have discovered that both boys are doing it backwards from our other kids - mastering pooping in the toilet first, then peeing.  Who knew???

It's been a great reminder that we're all in the same boat, our kids do things a little differently, and sometimes slower than non Ds kids, but we're all getting it.  And, really, would you want it any other way?  Nope.  Not me.  I love Jake just the way he is.  He enriches my life in so many ways that I wouldn't have experienced if he didn't have Trisomy 21.  He makes me a better mother.  A better person.  And that's what it's all about, right?  Being the best person you can be.  Sigh.  Life is good. :)

Potty Training: Jacob Style

Once again, Jacob has defied my expectations :)

Yesterday, I was going about my business and he came up to me, grunted, and pointed to his pull-ups.

I asked him if he wanted to go to the bathroom, and he nodded. Then he took my hand, and pulled me into the bathroom where we have the potty training toilet.

Now, mind you, I haven't pushed potty training on Jake for the last couple of months because of the chaos of school. I wanted things to settle down before I pushed it on him again.

But once we got into the bathroom, he had me help him take his pants and pull-ups off, and POOPED right in the toilet. 

For any of you that have potty trained before, the potty always come first, and then months down the road, they get the hang of pooping. 

Nope.  Not Jake.  He wants to cut to the chase and master pooping first.  

Needless to say, the next couple of minutes were filled with high-fives, laughs, giggles, and squeals from his mother.  I guess we'll be doing some serious potty training these next couple weeks.  Jacob insists on it!  

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.