Happy Dance

Love this child.

Childcare

This is a long rant...be warned!

Ridiculously enough, childcare is still a crazy battle for us.  As Parker's behavior gets more and more challenging, our childcare options for him dwindle before our eyes.  Today's meeting was one that left us feeling defeated, defensive, and highly emotional.  We were essentially given an ultimatum...provide a full time aide for Parker in his next room, or leave the school.  Since there is no funding support for children with special needs under the age of three, no guaranteed one-on-one support once they turn three, AND the daycare is unwilling to take on even part of those costs, the path is pretty clear for us.

My immediate concern is finding him childcare in the fall.  We have a visit set up with at least one other child care center, and beyond that, will be seeking in-home daycare or a nanny.  I recognize that as the student to teacher ratio gets higher over time, presenting significant challenges for a typical classroom.  That being said, I believe that being in an environment with his age-group peers is the best option for him.  I also believe that a daycare setting has the resources and structure in place to provide more purposeful learning opportunities for him.  Ultimately, though, daycares are not set up nor are they willing to be set up to accommodate Parker's needs.

We were told today that there are other kids with Down Syndrome that have made it through the daycare program at our school but that Parker has more needs than they can handle.  We were told today that the teacher in his room spends hours a day just with him and that she feels so bad that the other kids aren't getting the attention they deserve.  Ouch.

I love my son, and I fully recognize that my love for him blinds me in some situations.  This is not one of them.  This is a situation where people are making a conscious choice not to take the extra step (or even a part of a step) to help him.  It might be wrapped up in a nice, pretty, educational package, but the reality is that it comes down to $$$$.  I don't even know that this issue is specific to Parker's school.  Other schools get around this kind of an ultimatum by holding kids back a room, or letting things slip within the room.  I do give this school a sliver of credit for sticking to what they believe is the most educationally beneficial, despite the fact that the educational benefit and monetary benefit happen to swing towards the school and not Parker.

My long term concern is and apparently will always be.....When is it Parker's turn?  Educational institutions are charged with the task of progressing EVERY child/ALL children.  I understand that this translates to....schools will spend their money on the things that impact the most children at one time.  They can't or won't afford to dedicate a disproportionate amount of resources to one child or a small piece of their population.  BUT WHEN IS IT PARKER'S TURN?  When is it his turn to benefit?  When will someone other than Matt and I and our families do something that is individual to him and his needs?  When will it be time for people to ask what is in his best interest, and then literally do every single thing that it would take to get there?  That is my fundamental, heart-wrenching question to the world.

I know that in the grand scheme of his life, this will all work out.  I know Parker will be educated, and that people will work hard for him.  But sometimes these roadblocks just suck.  They are crushing and exhausting, and my Mama Bear comes out and is just tired.  Whew.

Let's hope and pray that we find truly the best child care setting for Parker.

Blog Reprise: Kalyn's Wedding Weekend!

Time to reprise the blog for summer. We had such an incredible time at Kalyn and Chris's wedding weekend in Atlanta.  We arrived a few days early so Matt could make it into a work trip...which was good financially....not so good in terms of keeping Parker occupied.  The hotel pool was a big hit...but we did struggle otherwise to keep Parker busy in a hotel room.  We drove around, went out for lunch, but it was HOT, so spending a lot of time outside wasn't easy for us.  

Parker did an awesome job on the plane rides, and was adorable during his Ring Bearer duties--I can hardly wait to see pictures.  He even slept at the reception...which was perfect for us.  

We loved being a part of their special day.  Witnessing the power turn on after a bad storm right as the bride entered the church aisle was more than perfect!  I am already missing these pretty girls and the new bride!

Carry the Banner for your Family

This morning, on my way to the 2nd of two full days of a weekend conference, I was gathering my thoughts for a blog post-- all set to write this evening and just spew the gory details of my family and our luck as of late.  And quite honestly, I may still do that, because even though this blog started as an online scrapbook for our family, it has morphed into a place for me to process my thoughts, and in some cases, unload my emotions.  The complete and total nerd in me views this like the Pensieve in Harry Potter books-- which is essentially a vat of memories and thoughts that are collected to free the mind for other things-- like making it through the day.

"I use the Pensieve. One simply siphons the excess thoughts from one's mind, pours them into the basin, and examines them at one's leisure. It becomes easier to spot patterns and links, you understand, when they are in this form."- Albus Dumbledore/JK Rowling.

However, I spent most of the day staying in sessions with the same speaker, whom grew to really admire.  He made two profound points during the conference.  The first is to change your perspective-- BE the change, no excuses.  He shared a video that I was emotionally unprepared for, which left me nearly crying in an auditorium full of peers.  The point being...we are responsible for our own mindset.

The second is to "carry the banner."  Now in the context of my conference, this meant that as educators, we are ambassadors of our schools and our students.  We represent them, and they deserve us at our best.  Personally, I felt connected to this in that it is easy to complain and feel sorry.  I am continuously adopting the mentality of "it could always get worse," but with 6 ER visits between Parker and Matt in the last 10 weeks, it is easy to lose sight of that.  With the challenges, responsibilities, insecurities, and stress in our marriage, it is easy to lose sight of the fact that Matt and I represent our family.  What people hear from us shapes their opinion of how we function as a couple and as parents.  And though sometimes the opinions of others shouldn't matter, the bottom line is that they do, even when you don't want them to.  

So in the spirit of that mindset, I am trying not to "siphon" my thoughts into my "Pensieve" in a negative, toxic way, even though it may seem that way sometimes.  The whole writing process feels cleansing to me, but frankly, can leave me raw.  And sometimes I wonder if laying out my vulnerabilities on a blog increases my vulnerability when I don't have strength to spare...and am sometimes fearful of the image it produces of my family in our hardest, most imperfect moments.  

My take-away from writing this post and from my learning as a professional is that we should always be willing to grow-- continuously and positively, but that it is okay to stumble and fall...as long as we keep working hard to get up and be better.

2015- Month 3!

Time is flying, and I am getting no better at consistently writing here.  2015 has been crazy for us already.  Matt has had business trips and a lot of late nights, I have attended several conferences, Parker had a hospital visit- it seems like it should still be January.  So, to continue the trend of re-cap posts, here's to being done with January....

THE FLU:

Ugh. If I never have to go through this experience again, I will be a lucky girl.  It was one part traumatizing and 3 parts exhausting.  Waking up to your child struggling to breathe with a 104 fever is not enjoyable by any means-- though Parker didn't seem to mind anything except the IV at the hospital.  I learned the hard way, but will be sure to warn other moms that breathing treatments seem all innocent and helpful when they are happening, but I was unprepared for the late-night, wall-bouncing energy that comes from five breathing treatments in one day.  Parker was literally running from one end of his white metal crib to the other.  We were ultimately lucky, though-- he did not develop pneumonia, and only spent about 30 hours in the hospital.  

Therapy Updates:

Parker is working hard in all of his therapies, as always!  He is walking and exploring running, he can go up the stairs and is just now starting to realize that going DOWN is the best part (via belly slide, of course).  He is very slowly expanding his horizons with food.  He is still a broccoli/veggie lover, and has been enjoying peanut butter and jelly sandwiches!  He still is not a fan of meat, but we are working on it. 

Speech remains our biggest struggle.  We have quickly realized that if we don't constantly continue to push him to use signs, he will stop using them completely.  We aren't sure if that is on purpose, or if he isn't retaining the knowledge of the sign.  We are looking into getting additional, private speech sessions.  I am looking forward to being able to hone in on this in the summer when I am home with him.  I know in my heart that he is better off in his classroom with his friends then at home alone with me, but the one-on-one support is my biggest guilt-inducer.  I'm hoping that, as he continues to become more interested in his peers, he will start mimicking them more.  

The contacts are pretty much the same.  They are stress and frustration causes for Matt and I, but we are consistently reminded of how worth it they are when Parker has them in.  As we keep saying- he is a different kid when he can see well.

Parker's Favorites: 2 yrs 2 months

Parker's 2nd birthday was such a blast.  It was the pick-me-up that we needed after losing my Grandpop.  It was super-hero themed, which I will admit, we are little bit obsessed with at the Preis house.  Let's face it-- it is better than most of the skull, bug, and monster themed junk out there for boys!  Plus, we feel like Parker is our super hero.  

So two months after his birthday, here are some of his favorites as a partying two-year-old!

Parker's favorite food: Uh-oh.  Parker still likes his veggies, but is turning into a carb-hound like his Mama.  He loves pasta, macaroni and cheese, PB&J sandwiches, and smoothies- but only the ones Daddy makes!

Parker's favorite toys: Anything he can throw is still his favorite, but in particular, he loves his popper push toy, his Little Tykes car, any and all chairs, his refrigerator magnets, and Chase's tail.

Around the house:  Roaming the halls of our house is one of Parker's favorite things to do.  His favorite pit-stops are: 

• At the kitchen cabinets, because they can be LOUD
• Mommy and Daddy have gotten smarter about leaving the bathroom door shut, but whenever he gets the opportunity, the toilet is a MUST SEE.  
• At the dining room fold-up chairs-- because he can push them around the house
• The STAIRS! Because reaching the top before Mommy and Daddy realize he is gone is the best-- many giggles ensue. 
• The refrigerator water dispenser tray is his favorite place to hide toys!

All time best: Parker is obsessed with his Daddy's guitar! He loves holding the pick and strumming, and listening to Daddy sing.

2015: The Beginning!

We have started off 2015 at a pace that seems as if it is a thousand miles per hour and slow as a snail all at the same time.  We had three "cold days" off of school last week, and are slowly trying to get motivated to un-decorate the tree, clean the house, and start crossing things off of our home/marriage/friendship/parenting punch lists. We have home decorating items, like getting a dining room table (which was a big deal to my Grandpop), putting up blinds, and organizing the always-there piles of STUFF - that really should have been done months ago.  I'm tired just thinking about it.  We have also come to the realization that as a family, we really need to be better about taking date nights and vacations and remembering how much we love each other without the stress of day to day life nipping at our heels (or sometimes, chomping us whole).  So that is on the docket to plan, too, which is more exciting to me than choosing blinds.  

Amidst all of our indecision on some things, we are kept at the thousand miles per hour pace because Parker has officially entered the toddler club-- complete with energy boosters and insatiable curiosity.  We are both loving it and completely exhausted.  It is tough in some situations, because he is into EVERYTHING, but doesn't necessarily understand commands-- which goes beyond just simple stubbornness.  Things get a little scary when he doesn't respond to the tone/volume of our voices OR our words when in a dangerous situation- like reaching to touch something hot or playing with cords.  It is all par for the course of being parents to a toddler!  

He has moved up to the next room at his school, meaning he is back with his peers for the first time in several months.  We are so excited about this.  I'll admit-- it is sometimes panic-inducing to walk into the room and see all of his peers talking and participating in structured activities, and see him wandering around them completely disengaged.  We are working on it, though, every single day, and believe that his feisty, bubbly personality will carry him farther than we can imagine.

So for now, 2015 is about improvement all around!

Nixing the Inner-Grinch

So this is mainly to get my inner-Grinchiness out of the way before the holidays.  In January, Parker moves up to the next room at daycare!! Normally, this would terrify me, but I am excited! He does so well with peers as his models.  His current room is 12-18 month olds, and he is 25 months, so he will be back with kids his age!  After two years and three daycares, it is amazing to me how clear it is when people LOVE Parker, versus being intimidated by his diagnosis, versus thinking of him as more work.  I think it is a mixture of Mommy instincts, plus teacher instincts that tune me in to this...and sometimes it is depressing.  

Parker has intensely and abruptly entered into toddler-hood.  He is mischievous (and clever), wild (and hilarious), stubborn in his exploration, and beautiful.  Typical toddler, right?  The hard part is that his communication struggles prevent him from comprehending commands or instructions-- so he is diving head-first into two-year-old behavior with the language skills of a 10 month old.  This makes some of his behavior challenging.  Currently, his teachers are frustrated with his swatting, pulling, and throwing.  He is STRONG! So he throws hard, and sometimes hits other kids with the toys he throws.  Gone is the baby whose calmness was envied by our friends and family with kids-- which we did love, but truly, we are SO thankful to see him engage with his environment!

The bottom line is, that it has become clear that some people see Parker as extra work and effort, and I hate being witness to that.  Teachers have a LOT of responsibility no matter what age level they are teaching.  But less teaching or child development knowledge is much more excusable when I know they love my boy. To be fair, this week has been worse than others, but still...I look forward to the next step...because it brings new opportunity to bond with people who love Parker despite his challenges, and who believe in him, and believe he can achieve. 

Cardiology 2014

This was it....the appointment that caused so much dread, anxiety, fear, and every other similar adjective in the book.  This one single cardiology appointment hung over our heads, looming, for an entire year.  I heard the Coldplay song "A Sky Full of Stars" on the way there and had tears in my eyes, because it makes me think of my Grandpop, and tends to ironically come on whenever I am thinking of him.  At the time, it felt ominous and sad, but I know that it was his message that everything would be okay.

The very last thing in the world we expected was to see the cardiologist's stunned face as he looked at the echo-cardiogram, and the very last thing we expected to hear was that we could come back in two years just to feel better about following up.  We were prepared for planning follow-ups and surgery dates in 2015.  We were prepared to hear that nothing had changed (like last year). 

To say we are grateful feels like the biggest understatement of our lives.  I know that so many other parents have so many worse issues to deal with than a moderate-sized hole in the heart, but for us....this situation (and the threat of open heart surgery) was unbearable.  This is a massive weight off our shoulders.

I really feel like we have guardian angels in our grandparents.  I picture my Grandpop up in Heaven, teasing my Grandmom, and rolling his eyes at the attention and admiration he is getting from down below.  I picture Matt's Grandpa leaning into his Grandma, saying "PMA!" - Positive Mental Attitude.  We are lucky to have them watching over us, and are lucky to have had them all in our lives.

Our little boy is so well loved, and is so fortunate to have (finally, in our minds) caught a break.  A big break.  Thank God.