Pre K Introduction

Wow...it's been over a year since my last blog post...that tells you how exciting our lives have been.  But that's ok, boring is good.  Like all other stay at home moms (part time or full time), I am doing the BACK TO SCHOOL happy dance.  My mind is spinning with all the things I am going to do with my free time 3 days a week!  I might go to the gym, I might go shopping, will probably do some DSAMC work, will definitely spend the first few days sitting at Starbucks staring at the walls. 


School wise we made a pretty big change for Jake last year & we choose to pull him out of the school district at 6 years old and put him in a private preschool.  Didn't know that was a option, did ya?  We didn't either.  Until the school district tried to pin us in a corner & tell us where Jake would go.  They really left us no option as they were not going to "give in" to any of our requests as to how his education was going to happen.  Nothing.  It was simply a take it or leave it kind of meeting.  So we left it. 


We were introduced to a AMAZING preschool in our area where Jake was welcomed with open arms, hearts, and minds.  There were no issues of his age, no issues that he was not yet potty trained...no issues what so ever.  They even offered him a 1 on 1 aid since this was a big change for him & the help was anticipated.  The only question that was ever asked was where do we, his parents feel like he will fit in.  Jake ended up being in a class of 3-4 year olds, 2 days a week for 2.5 hours.  IT WAS THE BEST THING WE EVER DID FOR HIM.  We learned so much about him and how he learns, what he needs & doesn't need.  Not to say it was all rainbows and sunshine...it was a new experience & it had it's bumps in the road, life always will...but it was a amazing year.  With that said, we decided to do it again this year.  Today we went to his new class room, met some new friends, said hi to some old friends, and took a deep breath.  Last year I at this time I had so many emotions running thru me, I thought I was going to explode.  I was so angry with the school district, so excited to find a alternative, so filled with love that they genuinely wanted him there, and so anxious that I had no idea how it was going to work out.  This year, completely different story.  2 emotions...excitement & joy.  I am so excited for Jake...I feel big things are going to come our way this year.  It's our year of bumping up last years game to get us ready for the big leagues.  Besides the prep & the therapy and all the educational parts of school, this is the year that I start building the foundation for the friendship, the true, life long friendships that Jake will have.  This is the year that we will invite HIS friends from school & outside of school to his birthday party.  This is the year that we will become more social without the fear of parents & kids not "getting" Jake.  This is the year that it's gonna get real.


So, what prompted this post (1.5 years since the last)...Jake's birthday & his new class.  Jake will turn 7 in a few weeks & I want his classmates to come (I also invited a few of his classmates from last year).  It's most likely that his new classmates would not come, because they don't know him yet & lets face it...our situation is a little different.  We tend to fear the unknown & Down syndrome is still pretty unknown, unless it's part of your life.  So I feel like I need to step up my parent game and do something about it.  So I decided to write a letter to the parents of Jake's classmates.  The letter will be in the same envelope as his birthday party invitation.  Here is our letter:


 

Dear preschool parents,

We would like to introduce you to our son, Jake.  We know that it is uncommon to introduce our child this way, but we wanted you all to know a little about him.  This is Jake’s 2^nd year at West Side Preschool.  Our hearts are full knowing that Jake has been so warmly embraced by the staff & families at West Side Preschool last year, and we are excited for the new friends and opportunities this school year. 

Jake has Down syndrome, and while that is a part of who he is, it does not define him.  Jake is a little boy first, Down syndrome is part of his genetic makeup, just like his hazel eyes and dirty blonde hair.

Jake is almost 7 years old.  We know it seems odd to have him in a class with 4-5 year olds, but developmentally and physically, that is where he fits in best.  Jake is ALL boy.  He is a ball of energy.  He loves to play outside, if there is water & mud, even better.  Jake likes to give hugs & hold hands.  Hugs sometimes turn into Wrestle Mania, but we are working on that.  Everyone is a buddy.  He loves to high five.  His favorite snacks are Cheez-It crackers, bananas, and string cheese.  He is not the prettiest of eaters, but he gets the job done. 

Still wondering why we felt the need to introduce Jake to you?  Well it’s pretty simple, we want you & your child to feel comfortable around Jake, and in doing so, you have to understand a little about who he is.  For instance, Jake is pretty much nonverbal.  We are working hard on that & you will quickly notice that Jake may not have the ability to verbally tell you what he wants or needs, but he will find a way to make you understand.  The biggest way to help Jake with his speech is to speak to him normally.  He understands EVERYTHING you are saying to him.  More than anything, we just want Jake to have the same opportunities as any other child, we want him to be included, and we want him to learn good behaviors and fun things from the kids around him.  We purposely choose to pull Jake out of the school district and put him in West Side Preschool because we feel that the social interactions he gets from his typical peers is so incredibly important to his growth and development.  In the past year we have noticed that he is learning to play with toys appropriately (pushing trucks, building with blocks, pretend play with kitchen sets).  We have also noticed that he is following basic 1-3 step requests more frequently, and is establishing lots of small routines.  We firmly believe he has picked up these AWESOME habits from watching and doing what his typical friends are doing.  Every once in a while (especially at the beginning of the school year) Jake will get overwhelmed, or over stimulated & will need to take a walk.  We are so grateful to have Emily by his side to help him out.  You might notice that Jake does things a little different in class.  Our goal for Jake this year is to get him prepared for Kindergarten next year.  Sometimes we have to be creative about how to get things done.

If your child asks what is “different” about Jake (it’s ok, kids are honest & speak what they see), a simple explanation is that Jake has Down syndrome, which means that sometimes things take him a little bit longer.  Like learning to walk, talk, and color.  You can also explain to your child that we are all different.  That we have different hair color, eye color, height, and weight.  These are all the differences that make us special and unique.  There is only 1 you!  Yesterday I overheard a little boy at the park ask his mom why Jake looks different & she simply explained, “that is the way God made him”.  The little boy said, “cool” and they ran off to play. 

If you have any questions, we are always happy to answer them.  Please don’t ever hesitate to pull us aside.  If you are more comfortable chatting thru e mail or text, that is great too.  Like most people, we knew very little about Down syndrome before Jake came into our world.  We learn something new about it and about him every day.  We have some great books that we would be happy to lend to you about Down syndrome, if you would like or there is a great You Tube video called Down Syndrome 101-UDSF that very simply explains what Down syndrome is.  It completely lifted the fog for our 10 year old daughter, it’s that basic!

 

Happy 2015-2016 School Year

Julie & Zach Gould

509-430-0896

juliekgould@msn.com

I also added a super cute pic of Jake.

Wow...that entire post was wordy...but I need to add a few more words...I need to acknowledge some people who have changed our world and become our friends.


Sonia (Jake's speech therapist in the school district): YOU ROCK.  When we felt completely let down by the school district you came into our lives.  It is so obvious you love what you do and the people you work with.  We want you to know that we recognize how above & beyond you go for your students, & we appreciate you.


Patty P. & Krista (Jake's teacher & aid last year): Like Sonia, YOU ROCK.  You two will never know how much you lifted our family up by loving & accepting Jake.  More than his teachers, you became our friends & helped us realize that there is ALWAYS a alternative.  You are appreciated.


Patty G. & Emily (Jake's teacher & aid this year):  I have complete faith that you guys too...ROCK!  ;)  As you can tell from this very wordy post, I am excited & grateful for everything you guys are doing for Jake & our family this year.  We look forward to amazing things!  You are appreciated.


KidSPOT crew (Jake's PT/OT & Speech therapist outside of RSD): You guys know YOU ROCK, but just in case you forgot...YOU ROCK.  You guys have been with Jake longer than anyone (& you still let us come back every week).  We don't see you guys as "Jake's therapists"...we see you as our friends, who happen to be awesome therapists.  Jennifer, when Jake pops his "tude" with you, it's because he loves you!  ;)  We appreciate ALL of you!


So, put ALL of these people together in 1 little boys life & watch out!  Good things are happening friends!

 

 

Peanut butter, hair cuts, and a cure for Down syndrome.

He smells of peanut butter & speaks a language that only he understands.  We call it dolphin.  He's very social...when he's in just the right mood, with the right amount of people around, the volume of his surroundings has to be to his pleasing, and the chaos...well that has to be to his liking as well.  Otherwise, he's out.  He is 5 and loves nothing more than to be naked.  I made a chore chart that only says "pee pee in the potty", 7 times a day, 7 days a week.  I'm willing to pay .25 for each chore.  Shoot...who am I kidding, I would pay much more but shh...that's our secret.  He has perfect flip flop feet, but refuses to wear flip flops.  Did I mention he smells of peanut butter?

I'm feeling very random & conflicted this afternoon.  My day started off pretty normal.  The boy woke me up at about 5:30 am (his norm), so I flipped on Toy Story & put the pillow over my head.  He crawled around on top of me hooting & hollering as Woody went about his shenanigans. I'm over it, let’s get up.  We had our usual breakfast of eggs laced with Prevacid, bananas, and a Nutrigrain bar.  I am well aware he's done based on the flinging of left over banana that just hit me in the head.  Speaking of heads...let's shave his!!  Dad is home (back up is required)...let's get this done.  My boy does not enjoy the cutting of the hair.  But when the screaming is done, he's so incredibly handsome.  Nothing super exciting happened today...same ol' same ol' stuff.  Until I sat down at the computer to see what's happening in the world (according to MSN).  And I came across this...

http://www.nbcnews.com/health/could-it-be-cure-breakthrough-prompts-down-syndrome-soul-searching-6C10879213?ocid=msnhp&pos=1

I'm not even sure where to start.  Do I believe there is or ever will be a "cure" for Down syndrome?  I don't think so.  Do I hope that someday they (scientist) find a way to help give people with Down syndrome a higher quality of life?  Absolutely.  As I do for the rest of mankind.  This article talks about the possibility of helping/eliminating heart defects, Alzheimer’s disease, childhood Leukemia... but with what risks?  Jake had heart issues as an infant, but had open heart surgery & now is a little superman.  We are good there.  But Alzheimer’s...that scares me.  So to say they may have a "cure" for alzheimer’s in people with Down syndrome...I say bring on the studies.    One of my favorite parts of this article, "If Down syndrome were completely cured, the world would lose something from the absence of that culture," said Skotko, who has a sister with the condition. "There is something positive that people with Down syndrome contribute to the world."

Amen.

He smells of peanut butter, I can't understand him, and he tends to be fussy around people he doesn't know, we spend a lot of money on diapers (at 5 years old), and he flings food at me...but the absence of all of that, in my world...would be unimaginable. 

 

Needs

This morning I woke up with a overwhelming NEED to hold my boy.  My normal routine is to get up & jump in the shower real quick before I let the little distruct-o-con out of his crib...but this morning the force pulling me to him was too great.  I walked into his room & was instantly greeted with his perfect little smile.  I snatched him up and sat on his bedroom floor.  His norm is to give me quick hug, make a kissy sound and bolt out the door to destruct.  But today he hugged, and hugged & hugged.  And patted my back to match the pats I was giving him.  It hit me.  It was 4 years ago today that we almost lost him.  I squeezed him a little tighter...he squeezed back.  I pulled away from him & said, "thank you for fighting for us...we need you buddy".  As if he knew exactly what I was saying (I choose to believe he did), he gave me a belly rolling laugh as if to say "silly mommy...I wasn't going anywhere", kissed me on the nose, and jumped up to start his day of destruction.

It's funny the things that take me back to what we went thru.  Every time I hear a MedStar helo go overhead I cringe a little knowing someones life just got turned upside.  I CAN'T buy Pampers for Jake or anyone else...because that was what was used at Children's.  Peanut butter M&M's & Hot Tamales were my source of food because I could sneak them into the ICU in my pockets...every time I have them it takes me there...just for a second.  The smell of a certain hand sanitizer makes my stomach turn because of the gallons we used while in Seattle.  And every time I hear a little baby cry a little too hard my heart skips a beat...because that is what took Jake's last breath before he coded.  He cried too hard & his little body couldn't catch up because it had been fighting so hard for so long...it gave up.  Obviously I have 100 times more positive things that remind me of happier things, but I don't think the this day & these memories will ever escape me. 

So today I feel incredibly blessed that I was able to have these memories, hug my boy, and go on with our day...because our story could have been very different. 

Things That Make You Go Hmmm...

To all my fellow peeps of the 90's...your welcome (http://youtu.be/XF2ayWcJfxo).

Tomorrow I am going to meet with a group of fab ladies to talk about Glitz & Glam, DSAMC, and give them a little glimpse of Jake's "story". I am not a public speaker...by any way, shape, or form. But I'm going to pretend. Wish me luck. I was trying to figure out how to jump right in & it hit me...I'm going to start by reading Welcome To Holland.

I jumped into my word docs, pulled it up, and printed it out. I started to read...I ALMOST made it thru without crying...almost. Keep in mind, I have read it a million times. I could probably recite it. I still cry. It's beyond perfect. I wipe away the "I'm not alone" tears & move on to what am I going to talk about after I'm done crying tomorrow night in front of 20 ladies.

I've got it all figured out (ya right), got my little cheat sheet printed out...I'm ready to go. I look up & can't help but smile. On my kitchen table sits a little vase with 6 little tulips. I fell in love with tulips 10 years ago while I was planning my wedding. They are simple, pretty, and perfect. Not expensive, or flashy. I just love them. I REALLY wanted a huge bouquet of white tulips for my wedding...but that didn't happen. They are a spring flower & I had an early fall wedding.

I'm sitting on the couch content that tomorrow is going to go great, & a whirlwind of connection hit me. Starting my new life with the love of my life & having an intense need for tulips in my hand/ Welcome To Holland / Jake/ Tulips on my kitchen table making me smile.

I am happy.

I have a beautiful family.

I love and am loved in return.

Life is good.

Stop & smell the tulips my friends!

 

Conversations with a 7 year old

I know every parents has these days...but for some reason to days conversations with Gracie has me giggling.  It started off with...

Me: Gracie, you need to go thru your dirty jeans pockets

Gracie: Why

Me: Because I think you left your manners in your pockets...go find them please.

I get a cross eyed look from her, but she stomps off to her room & comes back a few minutes later with her dirty cloths & puts them in the laundry room!!  BONUS, I got her to do a little laundry too...wasn't even looking for that outcome!

Gracie:Okay mom...I have my please & thank you's
Me: Oh good
 A little later on at lunch, she hops out of her chair & starts to walk away.
Me: Hey Ms Lu...what are you doing?
Gracie: I'm done, going to go play now.
Me: STOP...check your pockets...come back & sit down & try again
Eyes rolling, feet dragging...plop in her chair.
Gracie: Mom, may I please be done?
Me: No, 3 more bites (I don't even look...it's the go to answer every time)
Me: Thank you Lu, now put your dishes in the sink please.

A little later I hear her headed out the front door...
Me: Hey...what are you doing?
Gracie: Going next door
Me: How about a "hey mom, can I go next door" before you just jet out.
Gracie: Ok, sorry.

10 seconds later she comes busting thru the house right to the bathroom.  She means BUSINESS!!  After a few minutes she peeks her head out the door and says, "Mom, I went poop...can I flush the toilet"?
Me: Gracie, that is a question that you never ever ever ever ever have to ask...you just do it.  As a matter of fact...if it's real big...do a courtesy flush!
Gracie: what's that?
Me: We will call daddy in the morning & he can explain...he's the expert in the family!!

Setting the bar high for 2013

For lazy, that is.  I'm frequently asked, "Do you ever stop"?..."Where do you find the time"?...and "How do you come up with this stuff"?  Answers: Occasionally, bedtime, and Pinterest.  Today is the exception.  Why today?  I'm not sure.  Maybe because it's a holiday that doesn't involve any kind of "celebrating", maybe it's because I'm on day 4 of a 24 day diet, maybe it's because I'm the only adult in the house & I can be lazy to any extreme that I feel necessary.  Don't get me wrong...my lazy only goes so far (it's pretty far)...but I'm not looking to make any trips to the ER (that would disturb my lazy...& it's expensive).

So, today I have STOPPED.  I'm being lazy.  I'm blogging from my laptop, on the couch, in sweats, hair in a towel from the shower I took an hour ago.  Your welcome for the visual.  How did I manage to STOP with 2 small children in the house...child slavery.  Yep, I said it.  Quit rolling your eyes.  Anyone who has children does it, or had children did it.  You call it "chores" or "helping out".  I made a game of it.  It's called "Gracie is mommy today".  It's derived from the games "Lets see who can clean their room fastest", "Who can take a nap the longest", and the most common, "Who can be quiet the longest".

1st task...get Jake out of the bath, diapered, & dressed.  Ok, I helped with the bathing (remember the ER avoidance)...but the rest was on her.  She went for the PullUp (normally he sports a diaper, but PullUps are easier to put on) nice call.  Dressing was accomplished, as long as we don't leave the house (which would most definitely land us in the ER being that Gracie probably can't see over the steering wheel in my car).  He's rocking his Toy Story jammie bottoms & Buddy Walk t shirt.  A+ for effort.  He's been dressed in worse!

2nd task...breakfast.  She went with what she knows...peanut butter toast.  Yes, I allowed her to use the toaster.  As any good parent would, I supervised...from the couch.  She rocked it.  She was happy, He was happy, mission accomplished.  I did do med duty (no ER today rule).  Oh and because she is "mommy" today she even made me breakfast.  A tasty protein shake. 

Playtime.  Jake has a movie going & is destroying the playroom as I type.  Gracie & the neighbor girl are coloring.  Like any good mommy, she is having a little "me time".  She has noticed that Jake is in destruct-o mode, but calmly said, "I'll get that later".  That's my girl. 

I just informed her that she may need to start thinking about lunch because Jake will need a nap in about a hour.  "What do you think you are going to make" I asked, trying to determine if I actually have to get off the couch.  BTW, I have a "no CPS rule" too.  Which means the kids have to eat.  "Mom, I don't know how to cook...I can't roast anything".  True that.  Thank God my laziness seeps out at other times because I just happen to have Crustable PB&J sandwiches in the freezer.  Pop them out & they are good to go in about a half hour.  I'm also teaching her time management!  But she's insisting on Spaghetti O's.  Can opener...microwave...potential ER visit...darn.  Guess I better get on that. 

It's only noon, but I'm guessing the rest of the day will go something like this...
-Family nap time (remember our game of who can take the longest nap)
-RedBox return & new rental (yes, I'll drive...geesh)
-Pizza for dinner (that someone else will make & deliver)...& there is a good chance that we will have a "picnic" in the playroom so that we don't even have to get up from our movie marathon. 

Happy Jan1, 2013!!

 

Two years ago we were having a hard time helping Gracie (5 yrs old) understand giving/wanting/needing/selfishness/kindness...just to name a few.  There were a lot of things that contributed to the lack of understanding.  Age was a big part of it.  But another big part was the fact that little brother had been getting a lot of extra attention in the 2 years past & that had slowed down dramatically.  Life was calm & it was time to pull in the reins & work on the things in our life that we just couldn't stop to take the time to do in the past few years.

While surfing the net, I came across a blog (via Pinterest) about a women who took her entire family out on her birthday & did random acts of kindness (RAK).  She did 1 for each of her birthdays.  I LOVE this idea.  And with my birthday being right before Thanksgiving & Christmas...it's perfect timing!  Double bonus...it's something that Lulu & I can do together...just the 2 of us, milling around the Tri Cities, making someones day a little brighter.  There are so many character traits in doing this that I want Gracie to understand & love.  I plan on making this a yearly tradition, with hopes that she does it with her children down the road.  We started doing this 2 years ago & it gets better & better every year.  The first year, I'm not gonna lie...was kind of a nightmare.  She REALLY didn't understand why everyone was getting all these balloons, drinks, toys...and she couldn't have one.  Last year I tried to make it a little more kid friendly by doing things that would get her interested (we Ding Dong Dashed, handed out lolly pops & balloons, & helped some people hang Christmas lights on trees)...just to name some of the 34 things we did.  This year we are cooking up some REALLY fun things, and my girl is excited!!

So, Lulu & I will be out and about sometime in the next week doing our 35 (YES, 35) random acts of kindness...1 for each of my birthdays.  And I think that admitting that I will be 35 this year should count as 1...but the whole point of doing this is that "it's not about me"...lol...so I'll let it slide!

Pictures to come!!