A Special Opportunity for You!

I've been busy.

Remember those wildflower close-ups I teased you with this summer?

Well, I finally got them on my website.  Yes, siree.

 

A portion of the UP Close collection!

But I am only telling you about it.  I want you, my dedicated blog reader, to be the first to know about it.  Please don't share this information publicly until I am ready.

Here's why.

I have a limited number of each print, and I want you to get dibs.  Sure, I'll produce more in the future, but it's crunch time before Christmas, and I want to make sure you have the opportunity to have one under your tree, if you so desire.

But with that said, please remember that I do really just have a few of each.  I don't expect a mad rush of online sales, but if things get busy, I'll have to get more materials.

Please remain patient with me.

Okay.  Ready for some eye candy?

Check it out at www.CopperHarborVitality.com!

I'm so excited!!!

If you do find any hiccups, do let me know.  I will work to get things corrected as soon as possible.

As far as life goes, all is well in the Harbor!  It's so quiet this time of year.  A time to truly kick back in the peace and quiet of this little town.

Brady P. says "Hi!"

The "Path" to School

I like to keep life fun.

Like each day when Brady P. goes to school.

I pull him in the sled.  The little red sled.

You'll have to imagine how cute he is all bundled up in his blue snow suit with his football hat and snowflake scarf on with his shark backpack in the front by his feet because I did not get a picture before he left for Thanksgiving break.

But he is stinkin' cute.

So here's the fun part for me.

I've been making a path.  

We take the same way every time, so I can get a little trail panked in the snow. 

If we are in a hurry to get to school (and we often are!), I'll pull him along the snow-covered road, so I can fling him in front of me as I run.  As his sled slows down, I make a ninja sound before I give him another yank in front of me, so he knows to hang on tight.

It's pretty fun.  He loves it.  

And when I laboriously hoof it up the driveway to the school, he shouts "Alalalala!" with his mittened index finger thrusted into the air like the leader of a brigade instructing his troops to commence forth with speed and force.  

He just wants me to go faster.

I laugh at the monster I created and tease him because, hey, I'm going uphill!  Who does he think I am, Super Mom?

Wink.

On the way home, we have more time, so we take the fun way.  

The "path."

I only quote the word path because once it snows or the wind blows, we are essentially starting over.  But I have not lost sight of the path yet.

We skirt down around the school building, and he has to hang on tight because the ground is so uneven that he often tips over right there.  He is learning to lean, though.

Then we follow the level path that traverses the playground.  The part I love most about that is how we cross the sled marks from recess that day.  

Sledding at recess.  What a cool place to go to school.  

Then we wind around the fence area, which is also off kilter from the swirling snow.  But he does a good job hanging on there.

After another public driveway, we enter the park.

Last week or two, a big UPPCO truck drove into the park.  They used the boom to put Christmas lights on the tall cedar trees.  I just follow the tracks the tires made as our path to cut across the park to the sidewalk around the community building.

From there we slide next to the sidewalk because it is shoveled pretty well, and sleds don't slide on cement.

Sometimes we'll stop in to the post office to check the mail.  

Then it's off to cross the street and carry on along the road in front of The Pines Resort until we get to our driveway.

It's really a lovely time.  I love the workout and Brady P. likes the ride.  When we take the sled out for a walk around town, he likes to pull the sled himself.

Then I get to shout, "Alalalala!"

How to Advocate

Being the parent of a child with "special needs" is, well, different.  And special.

Today I'm going to talk a little bit about what we have experienced within the education system because it can be challenging.  

My goal is to inform the mainstream public, who may never  have to think about such a deviation.  But more importantly, I want to give advice to parents who are in the same situation.

It can be difficult if you don't know your rights.

This blog is about advocacy.  My dictionary.com app defines advocacy as: the act of pleading for, supporting or recommending.  

It is not a passive word.  It is active.  It requires time, energy, research and dedication.

Here's my story to illustrate this. 

Brady P. started pre-preschool in 2017.  It started as two days a week for 2 1/2 hours a day, then went to three days a week.

I was mostly excited because I knew that would be the most socialization he would get in our little hermit lives.  He would see other kids.

He could watch them.  

He could listen to them speak.

He could interact with them to the best of his ability (which was mostly hugs and hair pulling).

He would catch their germs.

But he would be with them, and they would experience him.

Socialization at its finest.

I wasn't too concerned about academics, since I already knew he was a genius.

But here is where it was different for me.

I had to accompany him each day for the duration in case he pooped in his diaper.  The one room schoolhouse does not offer diaper-changing service.  And I get it.  I used to teach preschool at the one room schoolhouse.  That was not part of my job description, nor did I want it to be.

So I was there each day he was.  I hid out in a little office room and did administrative tasks that I could not do with a three-year-old running around and screaming for me (that was his method back then.  Now it's a polite "Mommy" and a tug on the sleeve.)

I watched the other parents drop their pre-preschoolers off, give them a hug and say good-bye.

I could not do that.

I wanted it so bad.

It was not an option.

This year started out the same.  I accompanied him each day, three days a week... dutifully, yet begrudgingly.

Why couldn't I just drop my child off at school and hug him goodbye?  When would my life start? 

Something had to change.  

Brady P. still poops in his pants (though the peeing on the potty is going really well!), so I had to be there.  Not only for that, but he needs a communication liaison.  He needs help washing his hands and eating lunch.  He needs to be told to stay in his seat.  He needs someone to pay attention so he doesn't run out the door and down the road to throw rocks at the shore.

He needs his own aid.

Low and behold, his IEP was up for review at the end of September.

What's an IEP?  It stands for Individualized Education Program.  Any child with a learning disability, behavior problems, etc. should have an IEP in place, so that child, the teachers and the other students all have a chance to work together as cohesively as possible without extra interruptions.

That's how I see it at least.  It's a way to keep the child included for the most part while making sure they receive the extra attention and support they need to thrive.

 

Wearing my mittens

That photo was purposely inserted to keep you interested as I talk about potentially boring factual information.  What a ham.

So Brady P. has an IEP.  

When he turned three, he started in the Special Education program which was the next step after Early On, an early intervention program from birth to three years old.  Special Ed uses IEPs.

Braeden's current Special Ed case worker (and angel, I'm quite convinced) saw the situation at the Copper Harbor one room schoolhouse.  Well, okay, I sent her a desperate email asking how we can make everything the best we can for Brady P.

She was all in.

I will interject here that we were thinking of moving to Arkansas for the winter, so Braeden could still see his dad on weekends.  So I was looking into schools there as well.

With an IEP, the needs requested in that document would transfer to another state.  So when our Michigan IEP was being written, any possible requests for Arkansas were considered as well.

Talk about covering our bases.  He could have gone to school in pretty much any state, and had his needs covered without having hours of assessments done.

Anyway, we wrote the plan for his speech and physical therapy needs.  They were adjusted as I saw fit because I learned a lot from the last IEP's mistakes.

"Can we see you more often?" I asked his speech therapist last fall.

"Well, it's in the IEP as once a month, so... we could make an amendment... but now winter is coming..." she lamented like we were kind of stuck.

Bam.  That answered this mom's questions.

GET EVERYTHING WE NEED IN THE IEP.

If you are a parent with a child who travels down this path, please heed this advice.  Do not wait for the professionals to tell you what they think.  

Tell them what you think, and be adamant.

You know your child best.

The professionals I have worked with all do their job very well, but they cover many children.  

You cover that one.

Get what you need for your child.

That's what we did.  With the help of the Angel case worker.

And now I come full circle.

I am not typing this blog from the little office in the one room schoolhouse like I have for many posts over the past year or so.

I am at my kitchen table, looking at the sun shine on the cedar trees.

Because Braeden has an aid.

***!!!Insert happy dance and Alleluiah songs!!!***

Yes, Brady P. has his own aid, three days a week.  A local person who does not have to drive an hour through the blizzards.  Bless his heart for applying and taking on the challenge of my little man.

So do you know what I got to do each day this week?

I got to kiss and hug my little preschooler goodbye.

He does so well when I leave.

I think we both need that.

When you know how the system works, you can use it in your favor, and get what you need.  I have found the professionals very knowledgeable, helpful and pleased that I take an active role in my son's education.

Please note that I am the representative for Grant Township on the Parent Advisory Committee (PAC) for Keweenaw, Houghton and Baraga Counties.  If you know of any parents in this area who are struggling with the system, please feel free to contact me personally, or call their office at (906)289-4250 ext.181.

You can attend a meeting with us for camaraderie, support, advice or more information.  There is a lot of support in the area, and yours (if you live somewhere else) that you may not know about.

Believe in your child, and believe in yourself.  I have learned that the possibilities are endless.

The Little Things

Hi!

What are you doing right now?

Are you doing 100-million things to try to get through the day?  Slamming coffee while navigation through traffic and finding a good radio station to read this blog to?  

Are you sitting in your recliner with a cup of tea while looking out the window at the beauty of Mother Nature and taking a few deep breaths before you have your favorite part of the week -- reading this blog? 

Wink.

Neither one is right or wrong (however, the former is dangerous while driving, and I don't recommend it.).  They are different, and  they are results of choices we have made.

We are where we are in life, and that's where we are.  It's not good or bad.  It just is.

How we choose to look at it is the only part we can control.

When I first gave birth to Braeden, my life instantly went from a peaceful, "easy" pregnancy to a sudden chaotic state of emergency: an infant failing to thrive, constant research about the unknown, troubleshooting daily life, real-life lessons about learning how to be assertive to authority and organizing a constantly-changing schedule of events.  

All while enduring sleep deprivation.

(If you are interested in learning the specifics about all that, I invite you to read Digging for Light ~ A Memoir to Inspire Humanity.)

That was the hardest thing I ever did in my life.  But we did it.  We made it through.  Thank you to everyone who helped.  I could not have done it without you.

Do you know how I mentally got through it?

I focused on the fact that it would all be over someday.  I just knew it had to be over some day because Brady P. would grow up.  His heart would get fixed.  He would have to gain weight at some point.  We'd have to figure out the cause of his emergency fevers too.

I visualized him as a happy, healthy, strong one-year-old. 

Daily.

Each moment I realized he was still alive, I was grateful.  

I tried to focus on my gratitude. 

Even when I would call my mother, the nurse, in a panic because his temperature spiked to 103.2 again, she would say, "Amanda, if his heart is beating and he's breathing, then it's not that big of an emergency."

It seems like a dramatic way to endure life with a newborn, but she was right.  If he was breathing and his heart was beating, then chances were, he wasn't going to die at that moment.  I had time to figure things out.

So I would try to be grateful with that time.  And be panicked while trying to get him comfortable and stable.  You know, mom stuff.

How do we even reach the point that we can feel gratitude in times of adversity?  How can we find it in our busy everyday life?  

We have to slow the heck down.

And say thank you.

For instance, I am grateful for the following things, so I say:

I am grateful for all that I am, all that I have and all that I can be.  I am grateful to live in this beautiful, peaceful town.  I am grateful for my health and abilities to do the things I need to do each day... and more.  I am grateful for my son who has taught me a whole new level of gratitude and love.  I am grateful I have good food to eat.  I am grateful I am pursuing my writing, a talent and gift that I can share to help me with my purpose of raising the consciousness of humanity.

That's basically the gist of mine.

What's yours?

Do you already have a spiel?  Is this something new for you?

Well, either way, give it a try!

Everyday.

And see how your life improves.

Cuz really, it's just the little things that help us get through the day.

So I leave you with a picture of Brady P. seizing the moment and enjoying a frolic through the leaves.  If it was a video, you would see that he turns around and goes the other way once he gets to the end.  Haha.  Little man.

Knee deep in the leaves

Trick or Treat!

Happy November!

I apologize for my lack of punctuality for the last two weeks.  Wah wahhhh.  

Blogger fail.

This Wednesday's blog time was replaced with a Halloween party and Braeden's first Trick or Treating in Copper Harbor, so there really wasn't time to sit and type.

Thursday was an all day town run.  

But I didn't forget about you.

The main thing I wanted to post was a picture of us in our costumes.

Unfortunately, none of them turned out crisp or well-posed, and I was just making fun of people who post blurry pictures on the internet.  Now here I go... posting one myself.

Instant karma, man.  Instant karma.  "Judge not, lest ye be judged."

So, judge away.

 

Super Mom and Batman!

Nonetheless, we did our part as super heroes, and helped save the day by being super awesome.   Braeden gave out hugs and petted puppies everywhere we stopped in town.  I just hung back, exuded super patience and pride as I watched him climb up and down the extremely high bus steps, carry his own pumpkin bucket and learn a new custom here in our country.

He got to eat Snickers for dinner on the "Ghoul Bus."  

Thanks, Copper Harbor, for a great Halloween.

The Natural Life

Last week we traveled every day from Wednesday to Sunday.

To and around cities.

Cities.

I get a knot in my stomach just thinking about them.

But all of Braeden's urology appointments were set up at the children's hospital in Ann Arbor (the best hospital we've ever been to), so we prepared.

I even convinced my mom who, surprisingly didn't need convincing, to take the ferry boat from Milwaukee, Wisconsin across Lake Michigan to Muskegon, Michigan.

While this option didn't necessarily save us time vs. driving around Chicago, it saved me the desire to jump out of the window of the car as it navigated 80 mph around a city full of hundreds of thousands of aggressive drivers.

I hate it.  It does not seem normal to me.  Yet, to some people, it's daily life.

To each their own.

Luckily, we signed up for the ferry.  

While waiting for the freshly arrived boat to unload, Braeden and I played out in the lush Milwaukee grass.  The sun was shining, and we donned only one jacket -- no hats and mittens -- as we had to do in the cold, rainy/snowy mix, gray Keweenaw.

Sometimes it's good to get away.

So we played in the grass.  And when I say played, I mean, Brady P. practiced his dives and rolls.  Laughing and smiling while the drying grass clippings stuck to his Copper Harbor sweatshirt.

It felt very liberating to us both.

I felt proud.

Little Brady P., who had already hugged all the kids his size inside the building, was now enjoying his time in the sunshine to the max.  Running in circles around the lone tree in the yard.  Diving and rolling and laughing.

I'm glad he gets a thrill out of nature.

Cuz I knew we'd be on that boat for almost three hours... and the car for three hours on each side of that.

He loved being on the boat.  So much that he stayed curious the whole time, even though it was his nap time.  He perched in the window to watch the sparkling waves.  I'm sure it reminded him of Lake Superior.

Perched

I'm really glad we spent that time outside because that was pretty much the only outdoor time we got.  The weather was up and down, but were often in the car... or the hospital... or in the concrete jungle... not rolling in the grass... or throwing rocks.

At the hospital, however Brady P. checked out with a positive outcome.  And we were told to come back in a year.  "Unless," his doctor said, "you want to skip this extremely long trip and get his next ultrasound done in Marquette.  Then we could just have a phone appointment."

Yes, doctor.  Yes.  We would prefer to skip that trip.

Picture # 4 by Super Man

As luck (and my mood) would have it, the ferry was cancelled on our way home, and we had to drive around Lake Michigan anyway.  But for that, my mom and I compromised, and we took the long way home in order to keep stress levels low, so this Yooper wouldn't jump out of the car. 

Those Eyes

Just look at those eyes.

In his element

Those little, almond eyes plunked right in the middle of that beautiful, muddy face.

I now know what lies behind those eyes.

Heart.  

Soul.  

Joy.  

Love.  

Gratitude.

Compassion.

Acceptance.

And a longing for acceptance and love in order to feel whole.

Before Braeden came into my life, I would see those eyes on any person with Down syndrome and look away.

Those eyes were not right to me.

Something was wrong with them.

They were too little.  There was nothing meaningful behind them, I thought.  

I was stopping right at the physical "face value" of them, and turning away, my heart hardening more each time.

But now I see those eyes in a whole different way.  I know that they look smaller from the outside.  I understand that that is a test for the onlooker.

Because, in order to feel the magnitude of love behind them, is to cast judgement aside, and look into them.

Not at them.

Into them fully.

And see the soul of a magnificent individual.  See the soul of all souls.  

See myself for who I am.

Before I was scared to see who I really was.  That was why I always looked away.

But I can't look away from my own son.  I am forced to learn.

Now I purposely dive into those eyes in order to scour my own heart for any other impurities.  

Brady P. shows me who I really am.  He shows everyone who they really are, if they look.

Through his wise, little eyes.

Thank you, Brady P.  We love you.

And happy birthday, you little 4-year-old!

"Key"romosome to Life

For the last four years, I've been watching videos about people with down syndrome.  They often come into my Facebook news feed and people send them to me in messages and emails because, well, they're relevant.

They are also inspiring.

Now, of course, it's media, and people can broadcast whatever they want to make things seems just they way they want them too seem.  

But there are some things you can't sugar coat.  Somethings you can't fake.  And most definitely, feelings that you can't make up.

I've shared some of these videos with you already, but here is one for this week that has crossed my path a couple times lately.

I love this little girl's spirit.  And confidence.  And her ability to be her own advocate.  It makes me so proud of her, and I don't even know her!

In a way, however, I do know her -- because I know Braeden. And I have a feeling he will be his own advocate too.

Sofia's message

As for me, I'm trying to advocate for everyone.  I believe that we all have a beautiful purpose, and once we are not influenced by greed and illusions of reality, we can let it shine.

Our friends with Down syndrome will be able to help us see this path because they are such a pure and vibrant life force.  They hold the key to how we can learn to do our part in this world.

All we have to do is watch, listen and learn.

Brady P. Sings the Alphabet

I'll spare you the chit chat today.

Brady kept singing the alphabet, so I recorded it for you.  When he got to "g" he smacked me because I was mouthing along.  But, jeez, Mom, he can do it himself!

CLICK HERE TO WATCH THE ALPHABET VIDEO!

A Little Extra

As a mother of a child with Down syndrome, I often feel like we (all the people involved in this little man's life) are a minority.  Most people do not experience the same repetitive challenges, moments of pride or depth of love that our family endures on a daily basis.

Before I go more into that, let me say that I am grateful for this unique adventure.

I sometimes feel a bit separated from other people because they might not know how to talk to us or even want to engage with us because Braeden is different.

But discomfort provokes a need for change.

And these changes have induced strength and purpose in myself and everyone else who loves him.

I know Brady P. won't just get by in a regular school with regular classes and regular friends without any extra effort.  His education would take a huge hit.  

Same with his medical life.  He doesn't just get by with the annual well-child appointment.  He has seen specialists from soon after his time of birth and will continue to all his life.  And the normal "cold" for him can turn into a panic attack as he struggles for a breath through his abnormally small passageways.

So, as his mother, I have to be proactive.  I do research.  I make phone calls.  I attend meetings.  I join groups.  I take him to therapy appointments.  And then I take the tools I have earned and use them the best I can to build an enriching life for Braeden.

It takes a staggering amount of time and energy.

But as a middle-aged white woman, I wouldn't know what it's like to be a minority if I didn't have Braeden. It is humbling, yet empowering to have this extra work placed upon me.  And I feel like I have more of a voice because we have different needs.  The spotlight mysteriously shines in our direction.

But we are not just different, we are extra.

Brady P. has an extra chromosome.  I know I've said this before, but it makes him more and not less.  I've written about how his hugs make people's day.  I've written about how his sweet little voice saying someone's name melts their heart.  I've written about how looking into his eyes shows you the depths of the universe.

That, my friend, is all extra.

So what can a person do when they feel like most people don't understand them?  Get with the other people in their minority group!

That's what we did last Saturday.  Grammy Linda, Brady P. and I went to the Mine Shaft bowling alley for the annual back to school party put on by the U.P. Down Syndrome Association.

I love that group.

Every person who goes to those events is extra.  The spotlight kids have an extra chromosome which exudes extra light.  Their siblings show extra love and learn extra patience.  The parents are extra real, extra supportive, extra understanding and just down right extra cool.

Watching his ball roll down the lane

I cannot express how much it means to me to be in a group of people who have all been humbled, yet empowered by the child that blessed their lives.  

I don't think anyone who truly loves, cares for and advocates for a person with Down syndrome could even fathom putting on a facade for the sake of popularity.  Because that special person in their life has taught them that it doesn't matter.

It doesn't matter at all.

It's what's inside that counts.  It's how we affect others that matters.

And Brady P. continues to teach me and all the people in his life that.  We are all able to see a more meaningful side to life, which humbles our ego.  Yet, at the same time, a true knowing of what is important in this life is then able to rise from within -- and that is the strength and purpose we find.

I am fortunate to experience this on a daily basis.  And I am grateful through and through.  And, as a writer, I am moved to share it with everyone who does not experience it first hand... and I hope that the world will be able to see it with a little extra light.