Parker's Favorites: January 2016 (Part 1)

I can't believe we are already in 2016.  In my head, I keep saying (incredulously) that this is the year Parker turns four.  For whatever reason, that starts to signify the exit from baby/toddler land and the entrance into big-boy-ville.  Parker has grown a bunch in the last 6 months.  His head reaches the island in our kitchen, and his baby belly is no more.  His hair(s) grows like weed(s)-- we are down to less than 5 weeks between haircuts before the mullet arrives.  He is ACTIVE to say the least, and so lovable.  We are always in a position to learn about him and from him.  His smile and laugh are contagious, even after he destroys a room, grabs a handful of my dinner and throws it across the table, or growl-yells in a restaurant.  There are times where I have to bite the inside of my cheek to keep from laughing at his earnest face when he is being "bad" -- or really, just exploring his boundaries.  I'm not inherently good at forcing him to do things for himself.  My gut reaction is to baby him and love on him, so it is a test for me to demand his best (and take the time when it is slow).

Parker is still our mellow little guy, but our definition of mellow with him has changed.  Mellow now should really read content.  He is happy most hours of most days.  However, when he was a baby, mellow used to mean calm.  Parker is no longer calm :)  He defines the word busy and very nearly bounces off the walls (more to come on this later).  He keeps us on our toes!  With that, here are his current favorites and goals:

Foods: Parker is picky like his mommy.  He finally likes chicken, as long as it has ketchup or bbq sauce.  He LOVES oatmeal, yogurt, broccoli, Mexican rice, and most sweet treats, which he very rarely gets.  Recently, he started to tolerate eggs, which is new for us.  He does NOT like anything cold, cheese, drinking out of cups, or feeding himself without throwing utensils.

Activities:  Before we realized what was happening, Parker became completely addicted to the iPad.  I think because it is bright and can be held close up, it is something that he can see well.  We try very hard to only play educational or musical shows.  Quite honestly, it is the only reason we can get anything done without it being undone.  We try and sometimes fail at not taking advantage of it.  It is one of our guilty parenting moments, but...mental sanity.

Parker got some amazing(ly generous) Christmas/Hanukkah gifts that he adores.  He has a piano and a puppy-guitar that he loves....because music is his absolute favorite.  When trying to sleep, snuggle, calm, or captivate, music is our go-to.

Parker also likes to MOVE.  He loves being chased around the house, especially when Chase is following him.  He loves to dance and often throws his own dance parties (with or without music) with his shadow or in front of the mirrors at speech/OT.  He LOVES aqua therapy.  In fact, he is at the point where we are keeping him from trying to go under water!

Honor Roll.

So, I have a long commute every day (as does Matt).  Some days, it is more about just making the drive so I can start my day.  Some days, it is about introspection and mentally preparing for the day or week that comes.  Other days, it is about observing my surroundings.  Sometimes, as one would expect, I see the same cars repeatedly.  The other day, I noticed all of the cars that were driving around me that had "My child is an honor roll student at x school."  At first, I just thought about how much  I begged my parents to put that stupid sticker on their cars when I received it.  It was a big deal to me to be on the honor roll, even through college.  But my next thought was kind of a punch in the gut.  Parker will never get one of those stickers.  I know most people come at a thought like that with the "oh, think positively, you never know what he will be able to achieve!" comments, and I appreciate their sentiment.  They are right, I don't know what my little man will achieve.  But I am also being realistic.  Parker shows over a 50% delay in comparison to his peers.  That is unlikely to change to the degree of him making his school's honor roll.  Will he care about this? NO.  It is just an example, which we will keep running into, of where our expectations for our baby have changed.  

And that is okay. 

That being said, I'd love to see a strong movement, like the #ChooseKind movement, take over where kids are equally recognized for their achievements as PEOPLE.  Like being kind and generous to others. Or for being "Green" and environmentally conscious.  Or being active in the community.  There are so many more things to recognize our children for.  I hope that when Parker is at the point in his life where students are working towards academic achievement with purpose, that there are other things that are highlighted just as much.  Because let's be honest... the "Yay, you participated!" awards don't quite cut it.  Let's show kids that we pay attention to more than their grades.

Two, Three, Go!

We are SO proud of our boy.  In a classroom of his age-level peers, Parker is flourishing.  His current word count is 9 (ready, go, two, three, Chase, all done, up, and walk).  We are noticing that, of course, repetition helps, but that he is most attracted to phrases where we use inflection or lots of energy.

We are still working on comprehension.  For example, in speech therapy, we are working on saying (and doing) walk....walk....walk....walk....STOP! To try and help Parker learn commands.  He will walk and say the word walk, he will attempt to say stop occasionally, but is still struggling to transfer the word stop to other situations.  I anticipate language comprehension to be a main topic of conversation as we move towards his special education evaluation and subsequent IEP meeting next month.

Language comprehension is also probably the hardest thing for people that don't know him to learn about him quickly.  Even new therapists, who are around kids all the time, sometimes have a hard time realizing that he doesn't understand their command.  This is definitely what we struggle with the most at home, too.  Parker has the (almost) size, strength, and behavior of the average 3 year old.  He is not interested in rules, flies in the face of danger, and climbs/throws anything.  The following directions and learning from mistakes is what challenges us.  Many people assume he is ignoring instructions, which aside from some minor exceptions, is really not happening.  But, we take it one day at time.  We are introducing time-outs at home to try and find some way to communicate trouble for repeated offenses-- current favorites are pressing the power button on the cable box, pulling the air vent out of the floor and putting things down it, climbing behind the couches, throwing/dumping food, etc etc etc.  

As we speak, he is upstairs jumping up and down in bed, giggling and babbling to himself.  He is strong-willed, and HAPPY.  I know moms get really frustrated about that assumption with Down Syndrome.  Kids with DS are definitely not all always happy.  We just happen to be blessed with a son who is.  We are lucky.  Even though my house is a wreck :)

Speaking of Celebrations.....

We've been having the very real, nagging internal dialogue for a while now --which we were just starting to verbalize to one another out loud....the scary (to us) kind....the "what if he never speaks" kind.  We can look around, and see that Parker's peers, with and without Down Syndrome, are all speaking in some way.  We try our best not to compare, but at some point, other kids become a baseline for what you need to focus on, and I think that is okay.

We've really been struggling with comprehension and speaking for a while now.  It is our most major stressor on this journey, if I'm really honest with myself.   To us, beyond the physical needs (eating, hearing, vision, etc.), speaking and reading are the keys to independence for Parker.  It took us over a year to teach Parker the sign for "more."  We quickly learned that if we don't intensely repeat signs, he stops using them.  Thankfully, the last 8 months or so, Parker's sign language has been increasing in frequency and he is now mastering signs in about a week, again as long as they are practiced often.

Our next step was Parker initiating the signs, instead just responding to our prompts.  I was over the moon when Parker first asked to "eat" without me asking him.  This is important for so many reasons, but one of the most prominent is that Parker is learning to show his opinion, which he doesn't always do.  We are also working on two-sign combinations- like "more please" or "more cracker."  We are learning the merits of the reward system very quickly with this.  Sign language has been life saving for us, and Parker is getting the message that communicating is important (or in toddler terms, it gets you what you want).

In the last few weeks, in his new (thriving) school environment, Parker has started mimicking other kids and adults, and exploring sounds.  Matt and I are always asking him if he is "ready to go," or saying "let's go," as part of our transition routines.  This lead to him repeating the word "go" one day last...which was astonishing to hear in his little voice, clear as day.  Over the last week or so, he started to be more purposeful-- though he is still mainly doing it when prompted.

It is no secret that Parker loves his doggy, Chase-- which is why, naturally, his next word was his version of Chase.  Seeing him standing in the crib in the morning, pointing to the dog, and saying "Chase!" is heart-warming.

Then, this week, we started saying "Ready Go!" during speech before going down the slide or swinging at the clinic.  Success!  I literally cried on my way home from his session, and sent the video of Parker talking to our families.

We are SO proud of this boy and everything he teaches us.

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.