Lake Lesson

Hey!

I miss you.

I sure hope you are doing well!

But, you know what? I'm learning, alright. I hope you are too. And I can help you learn from my mistakes, if that's okay. Some people learn best by reading, some by doing, some by taking notes, etc. I learn best by making mistakes. 

Ha!

You might remember that I've been quite busy lately. I mean, that's why I scarcely get to this computer to write you your weekly love note. 

It's not you. It's me. Wink.

So I've been busy, alright, and some things have been falling by the wayside as they say. I don't like that feeling.

Life ebbs and flows, however, and we just need to roll with it. But there are some things, like those good things that we do for ourselves to keep us sane and at peak performance that often get left on the side of the road.

Hint: try not to do that.

Starting in April of 2022, I decided to start doing cold water immersion.  Some people sit in ice baths up to their neck for as long as they can stand it. Some people take cold showers.

I have this large and lovely just-above-freezing body of water right down the road. 

I chose the lake.

Her Majesty, Lake Superior, that is!

My first try was 17 seconds in that beautiful frigid beast up to my neck. I made it 48 seconds the second time. Then I surpassed a whole minute!

I was trying to go in once or twice a week because it made me feel sooooooo good... after I got out and warmed up, of course! Let there be no doubt that lake is cold. I brought a thermometer in one time, and when I pulled it out, the mercury was at 33 degrees F.

Coming back to an icy shore

My point is that I was making this wonderfully exhilarating event part of my weekly routine. I was feeling sharp, full of energy and full of life.

Then I got "busy."

Wah waaaaaah.

I was doing all the things I mentioned in my last post plus all the other parts of life that I don't need to bore you with. We all have life to deal with. 

And we should be so lucky.

But let's learn and get it right, okay?

So after a month and a half of busyness taking over my "me time," (that's right, I didn't go in for 6 weeks!) I decided to go back into the lake. Just last week.

I was alone, and I had no towel, but I worked with what I had. I could absolutely feel that I had to get in there. I couldn't take it anymore!!!

So I went in for about 30 seconds at my favorite beach.

As I emerged, the sun warmed the beach rocks just enough, so I could warm myself.

Once I got to shore and felt humanness return, I sat in the rocks and then -- well, let me tell you what my journal says for that day.

    Then I sobbed.

    Sobbed and sobbed.

    "I missed you!" I cried to Her Majesty. (Repeatedly)

    "I needed that." I wailed. (Repeatedly)

    I came out and felt like a totally stripped down version of myself.

    I was not a mom. Or a deputy clerk. Or a girlfriend. Or a mountain bike coach. Or anything.

    I. Just. Was.

Yeah... I needed that!

And all the stress I had been feeling was rinsed away because I realized that I was putting it all on myself to be all those things in such a capacity that I was over-extending me.

Does this sound like anyone you know? Do you do this? How do you real yourself back in when you do?

More often than not we commit to more than we can handle. There are so many facets to life, and, in a way, it's fulfilling to be a part of as much as we can. But we must remember to always take care of ourselves or we'll have nothing left for other people, other jobs, other passions and other hobbies.

Whether this resonates with you or not, I thought it was worth sharing.

And, hey, if you ever want to try cold water immersion, I know a great place to go!

Miracle Worker

Remember last school year when we found and aide for Brady P? 

I have not praised her enough to you yet.

This post is a shout out to her.

Braeden calls her "Miss Whiz."

Miss Whiz and P. Pie

Miss Whiz devotes her time with him to the absolute highest standard. Each time she sees room for improvement, she takes it. When she sees it's time for a change, she makes it.

She doesn't just view her position as a job, she uses it as an opportunity to help improve somebody's life.

And she is nailing it.

Let me tell you, though -- her efforts don't just change his life, they (in a HUGE way) change mine.

I can just be a mom. (Haha. Like being a mom is simple at any capacity!)

I didn't know that was possible for me before she came along. I was used to being his everything.* 

I tried to carry out all his therapies at a somewhat large magnitude. I am not really a therapist, so I expended much more energy than I would have if I could have done those things efficiently.

Miss Whiz does them efficiently.

She is a therapist.

She has made giant strides with him in all areas while I have been able to take a giant step back.

I no longer have to focus on how his fingers are positioned on the pencil as he makes each letter of the alphabet; I can just have him sign his name in somebody's birthday card. I don't have to worry about how many times he can hop on his left foot; I just make sure we get out for a hike together. I don't have to sit in front of a mirror with him to show him how to position his lips and tongue in order to make a specific sound; I can just make up a silly song with that letter in it and have him sing it with me.

Do you understand this change? His therapists spearhead the target areas, Liz puts them into daily action according to his IEP and I get to supplement them while we have fun.

I also get to be amazed at how far he progresses without me having to be there to prod him every step of the way.

That is nothing short of a miracle.

This summer Miss Whiz worked really hard on biking with him. (As a caveat, I will say that this is a bit of an ego-crusher for me because I am a certified mountain bike instructor... But to teach a small child how to balance on a bike??? I'm at a loss!)

Liz puts the effort in. She does her research. She finds resources to get him just what he needs in order to succeed. She even got him cool dinosaur pads because she believes in preparedness and safety. And she is just awesome.

Yesterday during school, she took some videos of him doing one of the things they tried to do all summer: pick his feet up and coast down a hill.

I am so proud of both of them for their perseverance. I have shed several tears while writing this post as I think back on how much things have changed.

They are quite the team!

Here is that video for you to enjoy. I still can't believe he's coasting down the hill like that! My heart bursts.

I hope you have something to be proud of today too!

* This note refers to the above comment stating how I used to have to be his "everything." Nobody could or should be somebody else's everything. And in all honesty, we have great support from family, friends and community. I would never discount that. I am grateful. We also would not be where we are without all those fine people.

But as the nearly full-time guardian of this little person during the school year (and looooong winters), I sometimes feel like I am doing everything for someone else to the point that I don't have a life of my own. That has been quite difficult over the years, so this contrast shows me how this is a miracle.

Even some of those helpful family members have felt a relief as Liz has entered our lives.

I got the opportunity to let go of some of the reigns and regain a connection with myself. I get to just be Amanda more than I could before.

So again, thank you to everyone who has been on this journey with us and shown support. And thank you to Miss Whiz for helping our dreams come true. We are all truly blessed!

My Little Ninja

Hi!

Our neighbors are really cool, and they ordered an American Ninja Warrior line for our backyard. We have the space, and they have the stuff, so it all work out.

Mr. Braeden has tried it a few times, and I have already seen significant improvement in his endurance, balance, strength and confidence.

Here is a little video. My favorite part is the giggles at the end.

Have a great week!

Home Summer School

Brady P. receives three kinds of therapy during the school year.

Physical: Targets gross motor development.  His main goals as of now are going up a flight of stairs alternating left and right feet with no railing, jumping forward 18-20" with two feet together and balancing on one foot for 5 seconds.

Speech: Targets the development of his mouth to say sounds correctly.  His main goals now are formulating confident sounds correctly, speaking in sentence phrases and reading sight words.

Occupational: Targets fine motor skills.  This one he just started, and his main goals are holding a pencil correctly, practicing writing his name and using his special scissors.

I've been concentrating on the first two for the first few years of his life.  He makes progress at every visit with his wonderful therapists.

Here's what I'm guilty of.  

I don't like to draw, so I never really made him color much.  I didn't do a whole lot with his writing, and I never thought of tackling cutting with scissors.

Well, now he needs to do that stuff in kindergarten in the fall.

I whined.

Nooooo!  Not the pencil!  Not scissors!  Waaaahhhh!

But nobody cares when you whine.

So I've been getting out his workbook from the school and his special scissors nearly every day after breakfast.

"Okay, Brady P," I'll say all excited-like.  "Are you ready to work in your workbook and cut with your scissors?"

"Yeah!" he'll shout like I just asked if he wanted to go get ice cream.

 

Practicing the Q!

That enthusiasm has kept me going every day.  But you want to know what else keeps me encouraged?

He is so darn good at it.

Let me back up.

Have you ever taught a child how to use scissors?  There is so much hand-eye-brain coordination going on there, you'd think you were composing a symphony.  

I'm not kidding.

We are building strength in the hand muscles, lining up the paper with the scissors, squeezing the scissors fully without pulling to rip it instead and holding the paper with the other hand.

That is just to snip little pieces of paper one time.  And we keep going back to the beginning, so he has that base of strength to work with.

Wow, wow, wow.

Just when I think I can't be any more patient, I learn it in another way.  And in an encouraging way, nonetheless because he can't see me get frustrated.  If I do, then he will.

He needs high fives for completing a cutting session.  He needs claps for finishing one strip.  He needs praise words each time he squeezes the scissors all the way to the end.

Is this boring you?

Try teaching an almost five-year-old how to use scissors.  I honestly never thought I would.  It is tedious.  It is slow.  It seems like somebody else's job.

But it is mine.  And his.  And his progress and excitement makes it all worth it.

He is doing better and better at the writing, too.  I'm not going to get into all the minute details involved in that, but it's its own song and dance.

However, if he goes to kindergarten, and his teachers are impressed at how he holds his pencil, makes marks and uses his scissors, it will be sooooo worth it.

Because he is worth it.

Extra, Extra!

If you've been with me for the last few months, you know I like to switch it up.  One week you'll get adventure pictures, the next you get a lecture on love and kindness, the next you get school updates, etcetera, etcetera.

Today we are going to go a little deeper again.

Into the realm of what it's like to be a parent of someone with "extra" needs.  

I prefer to use the term extra.  "Special" needs doesn't seem to cut it for me.  We all have special needs.  Needs that are unique to us as individuals.

What are some of yours?

Braeden, to me, has extra needs.

We are learning another language together (American Sign Language), so we can communicate effectively with each other.  Within that, we are also able to share that language with others -- expanding their horizons and opening communication with others that use ASL daily.

To me, that is extra.  It's a bonus.

I have to drive Braeden "to town," which is anywhere from 36-52 miles from our house, a couple times each month for therapy.

He has speech therapy in Calumet and physical therapy in Houghton.  Let me tell you, I am not a fan of driving to town, especially in the winter with a morning appointment and a blizzard.

But it is important that he gets assessed.  That I am given tips for further progression.  That he is praised for what he has achieved in the last month.  That we keep wow-ing his therapists.

The drive and the praise are extra.  And they are both worth it.

Braeden has extra medical needs.  Besides a yearly well-child checkup, he gets his blood drawn to check his thyroid levels and make sure his thyroid medication is at the right dose.  Extra appointments and extra number checking for me to make sure that what the doctor says matches what I believe.

He had open-heart surgery at 4 1/2 months old.  This May we go to see his cardiologist for a two year check-up to see how that operation is holding up.  He will also see his urologist in Ann Arbor, Michigan this summer to make sure his urethra surgery is still keeping things clear.

I believe he is fine in both these areas, but I will go the extra (700) miles to make sure.  For a half an hour appointment.

These are the things I've been doing from the beginning.  Luckily, with the physical and emotional time and energy of grammies and grampies along the way.  But to me it's "normal" until I realize how extra it really is.

The other day, Braeden came up to me, expressed his cuteness, turned around and walked away.  But there was something about that moment.

Wow, I thought.  I am raising that little boy.  And he has Down syndrome.  I am just doing that.  Not everybody would do that.

And it's true.  Not everybody would.  It is a choice I make everyday.  Not just to keep a small child alive, but to keep on top of all his appointments, all his medical records, all his therapies, all his progress.

To make sure we get out each day to bask in the glory of the snow or the sunshine or the lake.  To have extra giggles while we have our dance party.  To take extra time to show him my mouth while I sound out words that I know he wants to say.  To clap extra loud when he actually does.

Having Brady P. in my life has taught me a lot.  A lot, a lot.  And I am grateful for the schooling that only he could bring.  

He might be extra work, but he is so worth it.  If you ever meet him, or you already know him, you know this to be true.  

If you have someone extra in your life, I hope you know you are fortunate.  And they are fortunate to have you.