Aqua Therapy & Innovative Therapists

I have to give huge shout outs to Parker's therapy team.  Over the last few weeks they have each been especially innovative with Parker in moments of need.  My last post mentioned Ms. Deanna, our Speech Therapist, using aquarium tubing to get around Parker's tendency to bite straws.  Ms. Vicki, Parker's OT, has been using Therapeutic Listening with us to try and give Parker some additional body stability and awareness.  This week, it was Ms. Julie's turn (and her intern, Sarah).  

Every other week, we drive about 20 minutes north to Wisconsin for Aqua OT/Aqua Therapy.  It is a decent production-- the pool is at a HUGE rec-plex, and getting Parker ready for swimming takes some time.  While waiting at the pool this week, Ms. Julie informed us that because of a sanitation incident (aka: toddler poo!), that the pool wouldn't be ready for Parker to swim in until nearly the end of our session.  Instead of just sitting and waiting (keeping Parker still while near water- his most favorite thing - and near a wet, slippery floor would've been hell), or cancelling our session, Ms. Julie had us drive over to the small rec-plex lake, and did OT there.  That's right. Parker got to do aqua-OT in a lake! How fun!

These ladies are responsible for a huge amount of Parker's progress.  When I am ready to throw in the towel, or am frustrated with his behavior, they come swooping in with new, great things to try.

#thankful.

Hearing & Tubes & Straws, Oh My!

 Unfortunately, due to scheduling issues at Lurie, we had to cut out Parker's ophthalmology evaluation to get his hearing test and tubes done before the end of November.  Thankfully, Parker's hearing is normal and the tubes (normal sized this time!) went in wonderfully.  I am disappointed we missed the opportunity to get a really close look at Parker's vision, though.  I just could not risk waiting until November in case Parker had a hearing issue.  Hopefully, they will find another opportunity to do this.  

What we've learned at this point is that we need to work on clear annunciation when we speak to Parker.  He is having trouble distinguishing sounds that differentiate similar words

This summer in speech has really been spent on working with a straw and drinking from a cup.  Parker still gets the majority of his liquids from bottles, which is getting to be taboo for a 3.5 year old.  We are going to schedule a follow-up video swallow study soon to see if/how much progress has been made since last year.  We are really hoping to lose the thickening powder we are supposed to use for Parker's liquids from a cup. 

Our AWESOME speech therapist, Ms. Deanna, came up with an innovative way to get around Parker's tendency to bite straws.  We are currently using aquarium tubing to practice blowing bubbles in liquids that either taste super yummy (chocolate milk, which P has never had before), or colorful water.  After "accidentally" sucking inward a few times, Parker has figured out how to suck in intentionally.  This is HUGE. We are hoping to keep practicing that so that he is able to drink from a straw soon. Look out, Home Depot. We might clear you out of your aquarium tubes! 

The "ack-gack" and "suss"

Parker is learning new words every week, with a major focus on summer time.  This child is so obsessed with getting to school! Every night he asks to get his back-pack ("ack-gack") on and will sit in front of any door.  It has a clip in the front that he is working on trying himself, and he refuses to remove the back-pack for bed time.  I'm pretty sure it is the same size as him!  

He also LOVES the bus ("suss"), and his driver, Miss Pam.  She is such a sweet lady with a hard job! When the bus roles around the corner, I have to be sure to have a firm grip on Parker's hand, because he takes off running!  Thankfully, my feelings don't get too hurt but his excitement to get on the bus (and leave), because when the bus rolls around to drop him off, he starts smiling, yelling, and kicking the bus window.  

We are working hard on getting the beginning sounds of words with him-- repetition, repetition, repetition.  Right now, whenever we stress the "B" sound at the beginning of bus, Parker will say "buh-suss."  When we stress the "M" sound at the beginning of milk, Parker will say "mmm-gohk."  Needless to say, it is a work in progress.

I love this boy.  Even though it has nothing to do with Matt and I, I'm proud of how happy he is all the time.  It is a lesson for all of us to not take life too seriously.  

Thankful.

Tonight was a good night. On this special needs journey, I've discovered that other kids are often more intimidating to me than adults. Kids ask hard, blunt questions like: why can't he talk? what are on his shoes? etc. My challenge is coming up with age appropriate responses and managing the unpredictable, while fighting the urge to protect Parker from any possible pain or cruelty.  There are moments where I just want to whisk him away, and keep him holed up in our safe family bubble.

Tonight, Parker played with a little boy at the park, which honestly always makes me a little anxious. This little boy's sister, who is wheel-chair bound with significant special needs, had enjoyed the swings with us earlier in the evening.  This little girl was so beautiful--like Parker, you could tell that the swings were the best part of her day.  Her Grandma, there with her and her four siblings, was an incredibly happy, larger-than-life woman.  It was energizing just to be near them.

For the first time, I could really say Parker played WITH this little boy, not near him. Parker followed him, mimicked him, laughed with him, and was independent. He went down the big boy slide by himself. This little boy (maybe 4?) waited for Parker down the slide, helped him off the edge and up the steps, and let him slide first -- all without saying a word.

Tonight, I am humbled by a 4 year old. I am solidified in my understanding that Parker (and others with special needs) inspire kindness, empathy, and HEART in us all. And in turn, we get to pay that kindness forward. I love that.

Tonight, I am most thankful for a sweet child who innately looked out for my baby-turned-big-boy.  I hope we see him again at the park soon.  I hope that we meet many more children that have this kindness in them.

I so badly want to post a photo of this sweet boy's face, but out of respect to his family whom I don't know, I'll leave it at this.  Even here, you can see him waiting at the top of the slide for Parker to reach him. I wanted to hug this kid!

Are We Doing Enough?

Today is my only day off this week, and I am still hoping to spend much of it cleaning and catching up on some of the things I haven't done all year, like organizing closets and such (later).  But an article caught my attention today, and drove me deep into the never-ceasing, always-hovering question..."Are we doing enough?"  This damn question haunts me.  All.The.Time.  From therapies, to equipment, to supplements, to activities, etc.  I'm never quite sure if it is the right "stuff."  Nights that we lounge on the couch and watch The Wiggles are barraged with guilt about all of the skills we should be practicing. The guilt never stops.

The challenge of parenting in the 21st century is the endless access to information, opinions, and then some more information and opinions.  I am usually somewhat decent about reading enough to feel informed, and then making an educated decision.   The area of supplements and cognitive research goes outside my comfort zone.  As it is, we debated about using Nutrivene, which is a widely used vitamin powder.  When one of Parker's pediatricians said "If I were in your shoes, I'd be doing the same thing as you" in terms of using it, that was my solidified decision.

We are doing our best to take things day by day, and when needed, weigh the risks and the benefits, and also the opportunity cost of the things we do.  We know that the sometimes 2.5 hours of evening therapy Parker gets a week is at a financial and family-time cost to us, but the benefits of extra practice for him are worth it.  We will continue to be his advocates for life, even when that means making the tough choices and taking some chances.

Summer is within view!

I am just days away from "summer," which in my job, means time to learn, research, and have sporadic meetings and trainings.  I still get a lot of time "off" -but as all teachers know, we are rarely truly off.  In Chicago, summer means going from 62 one day to 94 a few days later.  It gets hard to plan activities, but we will at least be at the pool on those super hot days.

Right now, we are relishing in finally being at the language stage where Matt and I know what Parker is saying, but other people might not yet.  We have waited and worked for so long to get here, though we are just at the beginning stages.  Parker is so interested in speaking (when he wants to), and includes a lot of his own gibberish in the mix.  We are fiercely proud of him.

"Mo" Slide!

Parker has been adding words so quickly!  He has started to mimic us, which we love.    Here are some words he knows and is working on:

More, drink, bye, go, ready, 2, 3, eat, swing, slide, mama, daddy, I love you, hi, Chase, dog (woof), pig (he snorts :) ), cat (meow), monkey (ooh ooh ah ah), sheep (baah), elephant (how does one type the elephant sound?), horse (neigh), bottle, milk, all-done, sleep, coat, poop (HA!), up, down, out, no, walk, stop, and probably a few others I'm not thinking of.

And him asking for "mo" slide and "mo sing" (swing) with his Daddy are favorites!

Cow...Moo!

We are working on speech any time we can.  Sometimes this is repeating animal names and sounds before dinner, sometimes this is just watching videos on letters on mama's phone.  We hope to make everything purposeful, but let's be honest...sometimes the dishes need to get done without 97 interruptions.

We are so proud of our little dude.  He is enjoying learning animal names and sounds--- Excuse the snotty nose in this video. He so rarely lets me video his talking sessions that I have to post anyway :)

Destruction Mode

Man, it is good this boy is cute.  He is in constant demolition mode wherever he goes.  His little hands are into EVERYTHING.  I'm excited that he is exploring and testing boundaries; there are worse things than messes.  But...I'm tired!  The newest fun thing is walking to the kitchen island (which he is now as tall as!!!!) and swiping off anything within reach.  This was first tried with a full (luckily cold) coffee cup -and, being the queen of clutter, I struggle to stop repeating my mistakes.

We are working HARD on redirection and following commands.  We are also working on not raising our voices when we are frustrated.  While Parker is understanding more and more, it is difficult to tell when he understands you and is ignoring you, or if he really isn't processing what you are saying.  We are also struggling with discipline when we know he is ignoring.  Developmentally, time-outs are our best option, but he doesn't understand them well.  He is so easy-going that he often doesn't mind time-outs.  So, most of the time, we re-direct.

Luckily, he is a repetitive kid and sticks with the same few naughty behaviors...currently, pressing buttons on the entertainment system gadgets, throwing insert-object-here (phone, remote, food, etc.), and some others.  He is manipulative at times, for sure.  I see our future filled with 1) Cute smiles, giggles, and hugs to get out of trouble and 2) Mock innocence/fake misunderstanding.  We are just stepping into the smiles now!  Admittedly, there are times when it is hard not to laugh...like when he figured out how to make the ice-maker on the refrigerator work and stood in euphoric shock when they first came tumbling.  It is a work in progress!

Morning Shenanigans

See the story in the post below...