Crusading Through the Unknown

Hi!

I suppose by now you are curious about what the heck is going on.

You are not alone -- I am too!  Ha!

Have you ever tried transfering schools for your child with special needs during a pandemic, and the school you are trying to transfer to stops in-person learning?  

I don't recommend it.

There are so many variables and unknowns at this point, that I still don't know what we are going to move forward with.  However, there are some things I have learned that I am darn sure of.

1) I will do whatever I have to do, talk to whoever I have to talk to, move wherever I have to move, etc, to make sure that little Brady P. gets the best therapies, helpers and resources, so he can thrive.  This is about thriving.  His potential is vast, and I want him to shine.

2) I cannot control everything.  Sometimes I just have to put all my desires out there and then sit back and wait to see what is going to happen.  It's so hard to make a decision when circumstances are rocky.  I have to let go.  I HAVE TO!  Or I don't sleep at night, and the day feels heavy,

3) Once I set my intentions for the big picture, things fall into place.  At least they are starting to!  It seems like if you can pave the way for your dreams with your mind, then the universe knows what you want, and you start to notice the opportunities that pop up.  You are already paying attention to the things that will serve you, so you can grab opportunities easier.  It's so wonderful.

4) My family is amazing.  It seems like once we started this idea of getting Braeden into a school with more resources for his needs, my friends and family were very supportive.  Not just supportive, but helpful.  We have suddenly built this "team" and seem to be in a group effort with the same end goal.  We are all on the same page and are willing to do whatever we have to in order to make sure that little Swizzley boy can thrive.  It's very powerful, and I am grateful.

5) Honesty, openness and communication are so key in moving any process forward.

6) We are all connected.  Do I really need to say more about that?  We are all connected.  Every person on this planet.

Brady P. is doing great.  They other day, he sat down with his homework sheets on the floor and started answering the questions all by himself.  ALL BY HIMSELF!!!  

Usually this is a massive effort by me and Homework Panda, but not yesterday!  My parents applauded (my mom is helping out as his school aid for the week) and I gave him a big hug.

What a man!

We are so proud.

It's those little things like that that are big in my heart, and it makes moving forward with the best of intentions through the unknown all worth it.

Even the biggest hearts get tuckered out

So... Need a Job?

Hi!

I want to let you know that Blogger, the platform I write this blog on, has changed its interface for me.  What does that mean for you?  You are experiencing weird fonts, sizing and formatting.

Once I publish lately, some of the things I typed, aligned and formatted change.  Not sure why!

I just wanted to apologize for any goofiness you see as I try to figure out how to compensate for all those changes.  Thanks for your patience.  Now you know I'm not losing my mind, just losing control during the interface from typing to publishing.

Onward!

Brady P. started school!  First day, baby!

In the actual school!

I don't really have a lot of information to relay about it at the time except that it will take some adjusting for him.

AND...

The school is looking to hire an aid for him!  Could that person be YOU???  You already know Brady P.  It's just a matter of getting here and working school hours 5 days a week or so.  If you are interested, call Miss Jill at the school!  Pleeeeease! (906)289-4447.

I am in a rush, so I will leave you with this picture of my wee man before he got on the bus yesterday.  

He is proud!

Have a wonderful day!

My little poser

T-shirts Don't Lie

Hi!

I have to ask.

Do you have someone with Down syndrome in your life?  I ask because, well, it's really hard to understand the impact of it unless you do.

Then again, maybe that's why you readthis blog!  So you can start to understand.  

Or maybe you read it for the camaraderie because you do have an extraordinary person in your life.  Lucky you!

Let me tell you about a couple t-shirts I bought for full-price online.  This is important because, for one, I don't really like to wear t-shirts.  And for two, I don't like to buy things unless they are on sale or second hand.  

But when these shirts came into my inbox, the words on them hit me so hard that I ordered them (each at different times) right away.

The first says, "Down syndrome Mom: If you think my hands are full, you should see my heart."

I bawled the moment I saw it.  It was, and still is, perfect for my life.  

People often see me and tell me that they don't know how I do what I do.  They are often amazed at my situation.  

Or... something.  

I don't really know how people view me and my son.  I just hear what they tell me sometimes.  Often they say nothing directly to me, and that's just fine.

They can see what they see of us.  They can see that "my hands are full" as I leave my groceries on the end of the checkout counter while I tell the cashier, "I'll be right back!" because my son just got mesmerized by the automating sliding doors and decided to run out of the building.

Or they hear me talk about the three different kinds of therapy that he needs to have in order to even have a chance of catching up to the other kids.

But the kicker is the latter part of the t-shirt.  

"You should see my heart."

Because it bursts at the seams with love.  The grammies and grampies know this.  The aunties and uncles know this.  The community members know this.

Brady P. makes your heart burst with love.

He walks out of his room in the morning, closes the door behind him and greets me with a huge "Good morning" smile, a hug or a joke.  What a way to start the day!

We sit at the picnic table in the yard to eat dinner, and each time he hears a car horn, he shouts, "Hiiiiii!" so loud that it's embarrassing.  Even more so when he stands on the bench waving his arm shouting, "Hiiiiiiiiii!" to a car alarm.  And he does it more and more because I absolutely crack up.  What a ham!

And he gives me sweet kisses on all the parts of my face and says, "I love you, Mommy," and my heart absolutely melts as we embrace in a hug.

He is the sweetest, most loving person I have ever met.  His depth of caring and compassion has taught me to deepen my own.  It's like he's an angel and a human at the same time.

"You should see my heart."

It is so full.  

I would not trade my experiences with him for anything.  And I have never wished he was different.  He's perfect for me and our family and our community.

The other shirt says, "I am a Down syndrome Mom.  What's your super power?" With an S in the Superman emblem.  

I know it seems a bit haughty, but it's true.

When your child has Down syndrome, they don't just walk.  They don't just talk.  They don't just pick up a crayon and draw.  

Without support, love and encouragement, they really are not designed to do too much more besides love people and want to eat sweet food.

This may be a bit generalized, but in my experience with many other parents, it's true.  I mean, decades ago, people with an extra 21st chromosome were thrown into institutions where they were expected never to amount to anything.  

ANYTHING!

Then people started working with them.  Started giving them the love, support, encouragement, therapy, repetition and community that they need to thrive.

People realized that our extra chromosome friends could learn.  They just need extra help.

You know, I have never really thought about it in that way before, but in that regard, I am helping a small body of a person become what society can deem a worthy human being.

That sounds absolutely horrible.

But that's the way people used to think!

And Brady P. did not get put into an institution where he still can't walk or speak or know all the colors or the alphabet or how to count to 10 in 5 different languages or be able to name a dinosaur for each letter of the alphabet.

No.  He did not go to an institution

He came to be with me.  And our family.

And he can do all those thingsI mentioned.

He is amazing.

So that, I suppose, is why the parent of a person with Down syndrome can wear a superhero shirt.

Because it's true.

Thanks for listening.

Have a wonderful day!

Represent!

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.

A Chance to Teach

The teacher at the Copper Harbor school just asked me to do a talk about Down syndrome to the class.

Heck yeah!

I am fired up about it.  Thoughts, facts and things I've learned first hand are flooding my brain.  I just wrote a brief outline about the points I want to cover, so I don't forget them all.  I'm glad to get the opportunity to take some time to really think about what I want to say.

Because it is really important.

It is about my son.

But on another level, it is about everyone.  We are all different, and that is how I plan to start my talk.

Details aside, let me also say this:

It is starting.

My chance to advocate for Braeden and everyone on the planet is starting.  It starts small like this, but it is starting.  This is my path now, and I need avenues in order to get the word out.

I am excited to share my knowledge with the kids.  I hope they enjoy learning about it.  I hope they are surprised by what is possible.

And then I look forward to telling you how it went!  Stay tuned!

Do you?

Just another note about this picture.  We all came into this world with our own specific gifts, tools, characteristics and handicaps.  What we do with them, and how we view ourselves on this planet are truly what define us -- more than what we think we "gain" while we are here.

Think about that for a minute.  See you next week!

Advocacy Links

Brady P. turned three on Sunday.  Three!  Happy birthday, Brady P!!!

But don't go telling me that they just grow up so fast.  That you blink and they're in college.  That time just flies when they're little.

That is not the case for Brady P. Pie Jones.

He still wears pants made for a 12-month-old.  The kids at school call him a baby, and some of them are three years old too!  He doesn't talk.  He doesn't dress himself.  He still poops in his diaper and denies it.

Don't think I am complaining.  I don't know any different, and I really don't care because he is my Braeden.  He is different, but he is awesome.

In our daily life, he amazes me everyday.  He is so sharp, storing a wealth of knowledge in his brain.  His loving eyes and smile captivate innocent passersby.  He shows interest in his independence.  He is curious about e.ver.y.thing.  Everything.  It's no wonder it takes us so long to walk to the lakeshore!

And I wouldn't trade him for an ordinary kid.  Nope.  I'm glad he is extraordinary.

This summer he surprised Grammy Linda and me with his exuberant gestures to oration and songs.  I wasn't going to share this video with the Internet (mostly because I was trying to chant like a preacher), but it illustrates the awesomeness of Brady P.

We did this totally impromptu, but it is still one of our favorite videos to watch.

Brady P., the Preacher ~ Video

So I have started advocating for Brady P., people with Down syndrome and every person on this planet.  I can't help it.  It's what I came here to do.

I am a member of the Upper Peninsula Down Syndrome Association.  They raise funds to help educate and support families of a person with Downs.  They also offer fun events that allow the parents and families to get together and bond.  Oh, man, do I love that part.

I am joining the Parent Advisory Committee for parents of a child with special needs in the Copper Country.  Through that organization, I have also heard of other programs available in the U.P.  I can announce those once I check them out.

I wrote my memoir about raising Brady P, and how that affected my life dramatically.

I founded the Brady P. Project, which is a non-profit organization through the state of Michigan and, after it raises its start-up goal, it will become a federal 501c3 non-profit organization.  

If I would have had an ordinary child, I would probably still be freelance writing for outdoor adventure publications.  A fine career, but this new path has so much more meaning for me.  So much passion.  So much purpose.  So much love.

Thanks for being a part of it.

Now this is a free blog, and it will always be that way.  But I have an idea.  If you would like to give a gift in honor of Brady P.'s birthday, why not donate to the Brady P. Project?  It a can be a gift in any amount.  Though your donation is not yet tax deductible, it will be once our initial $400 goal is reached to apply for 501c3 status.

Thanks.  Even if you don't donate, thanks for reading and expanding your heart and mind.  Smiley face.