[31 for 21] ~ Today, I Wept…

I have always appreciated how where we live in Canada there are four distinct seasons.
About half the time, I am all on board for the changing of the seasons. Okay, let’s be honest here, I am fully committed when we are changing from Winter to Spring, and from Spring to Summer. The other half of the time however (obviously I am talking about from Summer to Fall, and even worse, Fall to Winter) I dread. I drag my heels, I complain, I pout that the warm weather is leaving and the advent of what seems like the eternal winter is upon us once more. Throughout the entire winter, I find that I constantly need to remind myself that it is just a season. That this too, shall pass.

This morning Jake and I were in his weekly Speech session at PREP, the preschool he attends twice a week for children with Down syndrome. We had just finished what I thought was a really fantastic speech session. He was engaged and involved during activities that are typically non-preferred for him, and he pushed through an activity that he was not interested in at all, and completed it. I was so proud of him and the progress that he is making with his new Speech Therapist.

We left her office, and were standing at the door to go downstairs to his preschool room. Before opening the door, however, I stopped to chat with a friend, who was there for a different class with her little guy. In the middle of my conversation with her, there was a commotion. I stopped talking and looked over, just in time to see Jake pushing another little one down to the ground, and standing over him pulling on his hair. I immediately stopped him, scolded him, and made him apologize to the poor little boy. Compliantly, he did apologize, I apologized profusely to the mother, and, full of shame and embarrassment, I quickly excused myself and took Jake down to school.

I came back upstairs after dropping him off, got into my car, and wept. I bawled like a baby for a good half an hour. Huge, heaving, ugly sobs of frustration and disappointment and embarrassment and inadequacy.

I wept because this was not an isolated incident. There was that time at the park last week, where he went up to a random kid and pushed him over for no reason. There was that time a few days ago that he bit his cousin on the cheek, completely unprovoked. There was that time today, after preschool, where his gymnastics instructor told me very gently, that he has developed a new behavior in the class of attempting to bite people who get in his way. There was that time yesterday at his typical preschool where his aide stopped him as he was reaching out to pinch a peer. And the list goes on…

I wept because I don’t understand. There have been no changes in our schedule or routine, there have been no major life transitions that have occurred lately, there has been nothing to suggest that he should be acting out in this way. I do not understand why the sudden change in my once easy-going child.

I wept because I want more for Jake. I want him to have friends, not drive his peers away with his erratic behavior. I want to be able to trust him around other kids. I want to continue to provide him with more opportunities for independence and growth, not feel as though I have to monitor his actions more closely. I want him to be a healthy, well-rounded child, capable of understanding and controlling his impulses.

I wept because I feel like a failure. Like I am somehow not providing him with the tools and resources he needs to be able to function in appropriate ways. Like I am failing Jake in the moments he needs me the most.

I don’t understand this new phase. I don’t know where it came from, why it exists, or how to navigate through it.
I know it is just a season. I know that this, too, shall pass.

But today, I wept.

Look at this cuteness! Why does it seem like this stage is like Dr. Jekyll and Mr. Hyde? One second, cute! The other second, pushing people over and biting. Grrr…

 

[31 for 21] ~ The Blurred Line of Boundaries…

So, it turns out that when you have a migraine for four days straight and are lying in your bed, depending on other people to help watch your children, popping Tylenol like it’s going out of style, and wishing with all your might that there were something you could do to get rid of the pain, you don’t feel much like blogging. Today the migraine has been downgraded to a headache, and a headache is something I can live with! So, I’m back:)

I’ve been thinking a lot about boundaries lately, specifically how to teach Jake about proper physical boundaries. I struggle in this area for several reasons. At the preschool that Jake attends twice a week (the one that provides specialized services for children with Down syndrome), they are beginning to work on physical boundaries. The teachers who work with Jake will give a high five, but they are starting to shy away from hugging, in order to be an example for the kiddos to learn that there are people we hug, and people that we don’t hug. They also teach all of their aides (the aide is hired by this organization, but goes to Jake’s typical preschool the other three days a week with him…) to do the same.

In theory, I totally, 100%, completely agree with the philosophy behind this. I have a deep desire to teach all my children, but especially Jake, who belongs to a vulnerable population, what proper boundaries look like. I absolutely want to jump on board the boundary train.

On the other hand…
At Jake’s typical preschool, which he attends three times a week with his aide, they end each class in a different room. The teacher stands by the door to the room where the parents are waiting, and calls each student to come out by name, as they see the parent waiting for them. And without fail, each student comes running out the door, stops, hugs their teacher, comes to the next door, stops, and hugs the second teacher, and then runs to find their parent.

What?!
How on earth am I supposed to expect that Jake won’t hug his teachers goodbye, or his aide (whom he absolutely adores), when that expectation is not put in place for the rest of the class? And to be honest, it hurts my heart a little when he tries to hug his aide, and she struggles with it. Because she wants to give him a hug too, but feels torn, and I feel for both of them in that situation. How am I supposed to be okay with not showing physical affection (in the form of an innocuous hug) to people who are safe people in Jake’s life? I am already working hard at teaching boundaries with people who are not a part of Jake’s regular life, but I actually feel as though physical touch, in appropriate ways, is super important at this age from people who are safe. People like teachers, and aides, who work with my kiddo day in and day out.

And so I end the same way I began.
The lines are all blurred…

Super excited for preschool!!

Such a handsome dude!

This is Jake in his typical preschool class, being the helper of the day! He LOVED it!!

 

[31 for 21] ~ These Are a Few of My Favorite Things…

Happiness.

Okay, I know I’ve posted about the word happiness for a few days in a row now.

I will switch it up tomorrow, but what I want to show you requires few words but much happiness.
Back about six months ago, we won a free photo shoot from PREP (www.prepprog.org), the organization where Jake attends preschool.
Back a couple of weeks ago, we had our family photo shoot in the beautiful fall leaves.
Back a few hours ago, I downloaded the pictures from said photo shoot onto my computer.

This is happiness.
Enjoy:)

 

[31 for 21] ~ Who’s the Lucky One?…

Happiness.

Today’s word is happiness. Actually, a more suitable word might be thankfulness or gratitude, but seeing as both of these words cause me to feel happiness, I’ll stick with that one for today.

Last week was rough for me.
I have already mentioned that I am tired, that I am waking up multiple times a night with both Noah and Jake, and that my exhaustion is at an all-time high. It was Wednesday morning. My hubby had left early that morning, so I was on a time crunch to get all three kids up, ready, and out the door to drop off Jake at preschool. Enter the biting incident. My emotions, which at the best of times are precariously perched on the edge of a precipice, could not stand up under the pressure of the events of the morning, and I fell apart.

I cried at home, rocking and comforting my baby boy (who incidentally, cried for about 90 seconds and then got over it and was fine). I sobbed into the phone as I called my husband to recount the story. I teared up while saying goodbye to Jake at preschool. I dropped Jake off, stopped in to see the Occupational Therapist that works with his class, and bawled uncontrollably in her office. I left the preschool, tried to forget about my sadness, and failed miserably. I went back to pick Jake up from preschool, and lost my composure again, crying uncontrollably in another office with more staff members. I used more Kleenex that morning than I have in the last two months combined!

Here’s where the thankfulness and gratitude comes in.
I am thankful to everyone in my life who loved me, supported me, encouraged me, and spoke truth to me that day.
I am especially thankful to the women at PREP (www.prepprog.org), the place where Jake goes to preschool. These women are amazing.

First of all, they love my kid. Unconditionally. And not only do they love my kid, but they love my whole family. I can actually feel their love and support, and it is an incredible blessing. For this love, I am undeniably thankful.

Second of all, they went above and beyond for me. It is not in any of their job descriptions to sit and listen to a weepy, bawling mess of a woman. It is not their responsibility to provide a shoulder to cry on. It is not their duty to provide comforting words, to give perspective, to show me the bigger picture, to empathize with me, or to encourage me above and beyond the scope of their job. But they did all those things and more. In my moment of absolute vulnerability and weakness, they treated me with respect, dignity, grace, and understanding. They were a soothing, healing balm for my soul. And for that I am incredibly grateful.

And thirdly, I am forever grateful that my complete and utter meltdown did not change their perception of me. I was able to be fully present in my moment of weakness and have them meet me there. But I came back to preschool this week, and they did not walk on eggshells around me. They did not treat me with pity, or look at me as a weak person. They recognized the moment for what it was, but did not let it define their view of me. My gratitude to these wonderful women runs deep.

Who’s the lucky one?
I am.

Bad day…

Better day.

 

What Happens In a Week…

I’ve got nothing.  Well, nothing profound anyway.
Then again, who says I always have to be profound?!
Instead of profundity, I thought I’d quickly share a snapshot of this week…

Monday was a holiday, so we had a family day at the Calgary Zoo!
It was a great time…not too cold out, Cole was a happy camper the whole time, and Jake had a blast, except for the part where he got a piece of yarn from my pom-pom stuck in his throat!

Tuesday night my husband and I attended a seminar hosted by PREP.  It was an information night about a long-term savings plan geared towards individuals with disabilities, called the RDSP (Registered Disability Savings Plan).  It was also about Estate Planning, and how to make sure that your child with disabilities is provided for in the event that you are no longer around.  My husband and I both came out of the meeting a little shell-shocked ~ so much to think about, so much preparation to be done, so much cause for worry.  My head is still swimming…

Wednesday brought with it a trip to the Physical Therapist for an update and evaluation.  Jake was such a superstar for her!  She noticed right away how much progress he’s made in a very short period of time ~ he was accomplishing tasks on Wednesday that he hadn’t been doing when she had seen him five days earlier.  He is progressing every day.  He is getting stronger.  He is gaining confidence.  This is fantastic news, and what I need to stay focused on.  The harder news to stomach…while Jake is doing amazing, his gross motor skills at present rival those of a typical 10-month old.  As much as I know that this is going to be our life, it still rocks me to the core to hear the stark reality of how far behind my child is.  I often wonder how one tiny event, such as the fantastic progress that Jake is making, can simultaneously hold so much cause for celebration and heartbreak.

On Thursday I was overflowing with pride.  I met up with two dear friends who I used to work with, and we got to catch up and meet each others’ kids.  As we sat together and I watched them interact with Jake, I felt so proud of my son, and so humbled to be the mom of such a great kid.  His smile melted them.  His personality drew them to him.  His joy was contagious.  I think all three of us women were blessed by each others’ presence.  I know I was…

And that brings us to today…Friday!!  Music Therapy, Drop-in Group Therapy, and a chance for brothers to just be brothers and play together…

Happy Weekend!

 

Day 23 of 31 ~ Just Keep Doing What You’re Doing ~

I am a worrier.  I worry about everything.

When I was pregnant with Jake, I worried that I had gestational diabetes (which I did not).  I worried because I continued to measure small throughout my entire pregnancy, and no one seemed to know why.  I worried that my baby would have Down syndrome (we had no idea that he actually did).

When I found out that Jake was in fact diagnosed with Down syndrome, it was as though the floodgates opened to worry on a whole new level.

Now I worry about all of the possible physical issues associated with Down syndrome: sight, hearing, heart issues, stomach issues, leukemia, thyroid problems, and the list goes on.  And not only that, but I also worry about developmental issues: gross motor skills, fine motor skills, communication, learning, and so on.

This guy (Cole) definitely takes after me; he often looks worried as well!

Today it snowed.  A lot.
Despite the snow, we bundled everyone in the car and went to PREP, and Jake was the only kid in his class!  So Jake got some great one-on-one time, and I got some time to chat with some of the staff there.

I told them that no matter what else is going on in life, no matter the joys, the struggles, the stresses, or the celebrations, there is always the nagging feeling in the back of my mind:  I am worried.

I am worried that I am not doing enough for Jake.  I am worried that I am missing some important aspect of his development that I should be working on.  I am worried that I am not pushing him enough.  I am worried that he might not be at the same level as other kids with Ds who are around his age.  I am worried that I am not a very good teacher for him.

You know what his teacher said to me?

“Karyn, don’t worry.  Just keep doing what you’re doing.  Jake is doing great.”

Every once in a while, we all need to be reminded of that.

Don’t worry.

Just keep doing what you’re doing.

 

Day 2 of 31 ~ A Day in the Life ~

This morning, like every Tuesday morning, Jake had PREP (www.prepprog.org).

“What is PREP?!” you ask…
I will go into a little more depth about PREP later on this month, but the gist is that the PREP Program is an organization in Calgary geared specifically towards individuals with Down syndrome, and their goal is for inclusion into home, school, and community life.  PREP stands for “Pride. Respect. Empowerment. Progress”.

Jake LOVES PREP!  It is basically a “pre-preschool” program for him, geared towards getting him used to a structured environment.  They sing songs, have play time, snack time, gym time, and lots more.  Jake’s teachers are amazing, and we have nothing but fantastic things to say about the program.  More on this in weeks to come, but here is Jake, having fun during play time!

Today was actually quite a busy day for us.  After PREP Jake had a nap in the car, I grabbed a healthy McDonalds lunch (note sarcasm here!), and we headed off to see his Pediatric Cardiologist.  We have check-ups with this specialist every 6 months, since Jake was born with an ASD (Atrial Septal Defect), a small hole in his heart.  Here’s Jake, getting his routine ECG and Echo done.  What a trooper!

The last time we had an appointment with the Pediatric Cardiologist, the ASD was measuring 4-5mm, and our doctor started talking to me about possible surgery down the road.  I was devastated, discouraged, and heartbroken to think of the possibility of my precious little boy having to undergo heart surgery.  Since that appointment, the worry is always in the back of my head, and as today’s appointment approached, my stomach was in knots.

Today, 6 months later, his ASD measured only 2mm!!  Woo hoo!!  Talk about great news.  The doctor said that they will keep an eye on things over the next little while, but he is optimistic that we are headed in the right direction for a possible closing of the ASD on its own, thus avoiding heart surgery.  Best.  Day.  Ever.  I cannot even begin to put into words how elated I am, and while I know that we are not out of the woods yet, I feel cautiously optimistic and hopeful:)

That’s it for now!  More tomorrow…as I continue the 31 for 21 challenge.