Morning Gem

Do you remember what it was like getting up early for school when you were a kid?

It was tortuously early and often still dark. Kind of a cruel trick, if you ask me. But here we go again.

Brady P does not like to get up for school. He wants to lay in his bed until breakfast is ready. It takes a great amount of coaxing to make him pee in the potty and get dressed. 

The most common words I hear on school mornings are: "No!" "Go away!" and "Just one more minute!" 

Ugh.

Luckily, he is a big fan of walking/running to school, so he will at least get out the door when we're ready.

Every victory counts.

On the weekends, it's a different story.

No alarms for either one of us. Another victory!

He wakes up with the light of day, gets out of bed, closes his door, closes the bathroom door and jumps into bed with me.

On those mornings, he is an absolute gem. So much that I had to write about it.

"Good morning!" he chirps as he climbs over me and rolls into his spot.

"Mummy! I had a dream last night!"

"Oh! What was your dream?" I ask.

Then he tells me his dream. It usually involves playing animals with his Grammy Linda and cousin Lauren, but he adds variations.

Then he asks, "What's your dream?"

You know, I dreamt, but I usually either can't remember or don't think it's appropriate to share. I'm just honest with him about that. He is disappointed, but he gets over it quickly.

Haha. Even when I remember my dreams, he is never too interested.

But there we are. Lying face to face. His adorable little cheeks are rosy and his smile is so bright.

He kisses my lips.

"I love you, Mum."

"Aww, I love you too, Dovie."

"I love you sooooooo much forever and ever."

"Oh, Honey, you are the sweetest!"

"You are the sweetest!" he says.

Then we snuggle closer and stare into each other's eyes. My heart fills with love, magic and gratitude. 

Wide eyes staring

I thank him everyday for coming into my life. I know he is the best gift I could have received in this lifetime, and being his mother is my greatest honor.

It can be difficult at times, but I wouldn't trade it.

Going Places

Hi!

Did I tell you we have a second grader?

Again!

Ha!

He started kindergarten a little early age-wise because he was ready. And he really was! He did great!

But now things are moving a bit faster in class, so everyone decided that this would be his repeat year. When a child with an IEP for a delay starts school early, it's pretty much a given that they will repeat a year. 

This is the one.

And it's perfect! All of the older kids from the past few years are going to Calumet school now, so B is one of the oldest in the school! Quite a different dynamic. Different, but good because change is part of life.

Miss Liz, his personal aide (and magician) said he is doing so well already this year. His output for actual work has really increased. We are so proud!

All the therapists that came to visit so far are thoroughly impressed. I tell ya. This kid isn't going to let anything slow him down.

Neither am I!

He's definitely changing and growing up, and I need to honor that. 

One way we did this was to get us new ride. A "motorcycle!!!"

We call it that because it's more exciting to say than an E-bike, which it is. But it kind of looks like one too!

On our way the first day of school!

We take it to school and to the shores and lakes and wherever we want to go. It gives us so much freedom, and I know he feels so cool on it. He sure is excited to ride it each time. He knows the rules about what to wait for before he can get on and off. And he can crawl up and down by himself!

What a little man. 

When he's on, he makes sure to hang on tight with both hands. That's another rule! He's doing really well. We are both not quite as scared as when we started. That bike is much heavier than I'm used to.

So far we really love our Rad Power Bike. Such a great find to keep us motivated to go places.

Where will you go next?

Little Victories

I think I've alluded to the fact that school mornings are get-up-and-go with no dilly dallying.

He's got to have his one bite (thyroid medicine), pee on the potty, get dressed and ride horses.

No wait, Mom. It's not ride horses. It's eat breakfast.

Oh yeah.

Haha. That is our song each morning to stay on task.

Then, when the big hand is on the nine, I put his shoes, hat, jacket and mittens out for him to choose which goes on next. Usually, during this process, I have to prod him to pick what goes on next and help him put it on.

But this morning, something changed.

I laid out his clothes when the big hand was on the nine. I told him I was going to put my boots on, and, I kid you not, by the time I slid my feet into both boots, I looked over and he had his hat and jacket on.

"Look, Mummy!" he showed me proudly.

Then he sat right down next to his shoes.

"Okay," he sing-songed. "Now my shoes!"

"Are you going to put them on by yourself?" I asked.

"Yes, Mummy."

And I watched in amazement as he did -- ever so diligently. Even the straps before and after. 

He tried his mittens by himself too (yes, it's still cold here!), but I had to help him with one of them.

I knelt down by him and hugged him so tight.

"I am so proud of you, P Pie! You can get your things on all by yourself! What a big boy, you are!"

"Yes, Mummy." he said. "Okay, let's go out!"

What used to be a terribly long, drawn out struggle turned into a quick two minute process. I know not everyday will be perfect like that, but what an amazing step forward!

My little independent boy. I am so proud of him.  He can do it, he wants to do it and he actually does it.

It's still a bit early to imagine this entirely, but someday, all the troubleshooting and struggling we do in a day, just to get through, will be done (or different!). I will have so much more energy for more productive things!

But right now, they are all teaching moments and guidance and persistence. Oof. It's been a lot, but we are getting there, and those little victories like we had this morning sure make it all worth the effort!

Chucking rocks in his duds

Thank you to everybody who believes in him.

Rejoicing in a Victory

Happy winter!!!

We just got what looks like 8-12" of powdery delight dumped on everything, so that sure makes it feel like winter is here!

What do I have for you today?

A heart melter.

Who is the biggest heart melter I know?

Brady P. Pie Jonesie of love.

Since schools and pretty much everything in this lovely state are taking giant precautions against a contagious virus, the one room schoolhouse did a video program this year.  It was pretty cute.

One of the scenes had Brady P. singing a solo of Jingle Bells.  In the program video, his solo was cut short and finished by his aide singing the line for him.  When I watched it, I didn't know why.  I figured he just got sidetracked or something.

But one day, I saw the original clip of that scene, and I learned why he stopped.

It made me break into absolute tears.  Good tears.  Happy tears. Like, truly the proudest mother on earth tears.

I can't even type about it without crying.

I will let you watch it to see if you got the same thing out of it as I did.

Oh man.

Sorry his voice is a little muffled with the mask and all, but he was saying the words.  His classmates heard him.  And they were proud.  So proud.

They know he has to work hard especially when it comes to speaking long phrases.  I'm not going to lie, I hear him jibber jabber throughout the day lately, so the fact that he sang Jingle Bells did not surprise me all that much.

But the fact that his classmates clapped and shouted so triumphantly lets me know that they are aware of how hard he works and how far he has come.  They were so genuinely proud of him that it made my heart explode.

Let me put it this way.

I am his mama.  I've been with him for over six years immersed in therapies, reading, speaking and all the things.  It's quite the project to help give a little person all the tools they need to be the best they can be.

But that's what I'm doing.

And to see that his classmates feel that they have invested time, energy and that genuine belief that he can do it, and then feel it's a victory to see that he has done it was almost like I was seeing a part of myself through them.  In them.

And it was so stinkin' beautiful!

It meant the world to me.

Thanks for sharing that with me.  I hope every person in the world gets to feel that at some point in their life because, well, there really isn't anything quite like it.

See you in 2021.  I bet you're ready!

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

Summer to the Fullest!

Man, summer sure is a difficult time to actually sit down and write at a computer.  There is so much more to life!

I missed you last week.  Want to know what's funny about that?  Last Tuesday I started writing to you, but by Wednesday, I changed my mind and I never published.  

Ha!

So just let me say that I finally got my little boy back with me.  We have been having so much fun!

It's amazing how, when a mama gets a break to do all the other things she needs to do, after her child comes back, all she wants to do is spend time with them!

Well, at least I do.

Brady P. and I have been spending every day playing.  Playing in the yard, going on walks around town, throwing rocks, finding adventures and new trails for him to hike (he loves to hike!), being goofy and laughing our butts off.

One of his talents is to blow raspberries on my belly so slowly that it sounds like a Harley Davidson idling under water.  Hilarious!

Two nights ago, I laughed soooo hard that I shook to the core.  It was much needed.  So wonderful and so healing.

Thanks, Brady P!

The rare Lake Superior water zombie emerges!

So we are doing great, just in case you were wondering.  

I hope you are too!

We have also been doing schoolwork.  It's necessary, so he doesn't regress in his cutting, reading and writing.  Oy!

Yesterday we drove 7 hours to Marquette hospital and back just to have his new urologist read his ultrasound from our local hospital and ask me a few questions.  Kinda seemed like overkill, but B was great on the drive.  Whew!

And his kidneys look great!  Hooray!   Some kids need to go on dialysis after having the ureter issue he had after birth, but we seem to be on a good trajectory.  Nice!

If you're curious, it's berry season!  Bils, thimbles, dews and blues are out.  Raspberries are coming soon!

See you next week.  I hope!

Stage Fright

Brady P. had his first Christmas pageant last night!

It was all pretty new and exciting as he has't yet performed in a Christmas, Thanksgiving or Memorial Day Program.  This was his first performance in front of half the town.

He had no idea what was coming.

We went to the school house early to get him in his elf costume.  

Cute as a button, he was!  I was pleased with how eager he was to put it all on.  No struggles.  Whew!

He ran out into the performance area with the other kids before the show began.  Everything seemed pretty normal to him.

Then, just 10 minutes before the show, all the kids went into the "preschool room" to wait for their grand entrance.

Unbeknownst to Brady P, the room filled up with townsfolk while they were in there. 

The lights dimmed as I sat in my front row seat.  When I heard the first jingle of bells prancing out, I started my video rolling.  Out came the first elf, then the second, then... a jingle of bells plopped down by my feet and pouted, "Noooo!"

Braeden parked his green and red velvet tushy on the floor and was not going to budge.  

Alrighty then, I thought.  Into the preschool room we go.

I thought I'd be able to convince him to go back out.

"Your friends are out there!" I said.  And I told him the names of some of his favorite people in town.

"No!" he retorted.  "It's too scary."

"All the people are too much for you?" I asked.

"Yes," he said and grabbed a fistful of my hair for comfort.

I immediately thought back to my first Christmas program.  I was in preschool.  The moment I saw how many people were in the audience, I bawled, and refused to go on the stage.

So I had compassion for the little man.  

I told him my story and held him in my arms.  We changed him out of his elf suit, so he didn't feel like such a spectacle.

By the time the show was over, chairs were moved, people stood up and the lights were bright.  Brady P. was happy to enter the masses in that setting.

Then, all the sudden, we heard a "Ho ho ho!"  Santa came!

All the kids rushed out, and gathered around.  Braeden was the first (and maybe only) kid to give him a big hug.  All the people said, "Awwww," and I don't blame them!  I teared up!

So the rest of the night went well.  And we made it through the debut performance.  I think it's a right of passage to run off with stage fright your first time out there.  Brady P. is apparently no exception.

Next time he'll know what to expect!

Leaps and Bounds

Tuesday I walked into the schoolhouse to pick up wee man, and the teacher started gushing to me about how awesome Brady P. did writing and spelling that day.

"What happened over the weekend?"  Miss Jill asked.  "I mean, it's like leaps and bounds from Friday to Monday."

I didn't even know what to say.  I was just so proud.

His afternoon aid stood there smiling.  A big, blushing grin.

His morning aid sent me a picture of his work earlier in the day.

Lili's name!

His special ed coordinator was blown away too.

"He wrote all the students' names," Miss Jill continued.  "A couple times. And he even wrote mine and came up to me all proud to say 'look what I did!'"

I know he's doing awesome.  I do his homework with him.  I read books with him.  I watch him progress. 

But to see other people beam at the accomplishments of my son fills me not just with pride, but with gratitude.  I am so grateful that he is a student in that school.  Not just because he's progressing, but because everybody notices.  Everybody is impressed.  And everybody is so proud of him.

The fact that little Brady P. shows significant progress in the areas he is so far behind in because of his extra chromosome, really touches the people that work with him.  Because they genuinely care about him.

His progress is their heart hard at work.

It's like a sprinkling of magic pixie dust blew through the schoolhouse and tickled everybody to the bone that day.  It's one of those moments where you can take a step back and say, "Wow.  We're really making a difference here."

And it means so much.  To everyone involved.

So, thank you to everyone involved!  You know who you are.  I'm not going to embarrass you anymore than that.

Thank you for caring.  And thank you for feeling proud of your efforts through a little boy who's going to help change the world.  Because you are giving him the tools to help him change it.

Ummm, Smile?

An interesting thing about little kids who are learning to talk (well, at least Brady P; he's the only one I've thoroughly observed.) is that they don't always know what shape their mouth makes while they are trying to produce a sound.

For instance, when I ask him to say "ooooo," he spreads the sides of his mouth out instead of pushing them together like an O.  We've tried a mirror and diligent repetition,  but I think it will just take some time.  I've seen him make an O shape with his mouth more lately, even if he doesn't match it with his sound quite yet.

Here's another goofy thing kids do when they can't see their mouth.

Smile terribly when you ask them to smile.

They can be jovial and laughing, but the moment you ask them to smile, it's like they suddenly use their brain and concoct an abnormal facial expression that somehow feels like a smile.

But it's not.

"Smile, Braeden!" the photographer told him on school picture day this week.

I've seen his smile face before, and it's really not becoming.  But somehow, that mouth posture transformed to something slightly hideous, yet comical.

Here's a photo from picture day that the photographer  recommended we do over.  I agree!

Not a framer!

And his morning aid thought it was funny, so she sent me a couple other pictures to show me that he still does it!

Smile!

Smile!

What a goon!

I'll have to show him that face in the mirror, and see how he reacts.  It's definitely not a smile.  It's upside down!

Well, I hope you at least got a real smile out of this.  He never ceases to crack us up!

Contrast

Ummmm, wow!

Thanks so much for all the encouragement, support and praise for little Brady P. and his team!  I still shed a couple tears when I read that last post, but it surprised me that other people did too.  

You're feelin' me.  I dig it.

Well, so far, so good at school.  It definitely takes a lot out of him, but that means he is putting a lot in.  Now it's just my job to deal with a wreck of a boy at the end of the day, and I can do that.  That's nothing new!

Because he (usually) wakes up the next morning ready to do it again.

I have not had a chance to talk extensively to the teacher or his aids about all the details of his day, but things should be a little less hectic for everyone soon enough, and hopefully we can share it with you.  If anything, parent/teacher conferences are in November.  I know they will come to me with any issues prior to that.

Soooo, do you want to know how I am doing?

Even if you don't, too bad.  Because it's my turn.

I am doing absolutely amazing!

I wake up, get him ready for school, buckle him on the bus, wave goodbye, then turn around and bounce up my front steps.  From there I can do whatever I want.

I mean ANYTHING!!!

Well, as long as I'm back by 2:30!

I can go back to sleep, I can meditate, I can clean my kitchen, I can write, I can do my art, I can visit friends, I can go to the garden, I can dance to MY songs, I can go out for an adventure.  Anything.

Yesterday, I went to town by myself.  Let me tell you what that means in comparison to going with wee man.

I got my list ready (it was a full day), my purse, water, coffee and snacks.  I did NOT pack a diaper bag, double check its contents, make sure he was sufficiently fed first, change a poopy diaper last minute, wonder how he was going to do on the hour drive there and back and all our stops in between.

The drive went smooth for me.  I meditated and processed life.  I did NOT have to keep saying, "Braeden, what do you need?  Sweetie, we are almost there!  No, I'm not playing animal songs right now, it's the radio.  Would you like another fruit strip?  Did you just throw your water?  Now you can't have a drink until we get there."

I went to all my shopping places, appointment and errands with just a purse in my hand.  I did however, notice every single other mom who had her kids with her (even a dad or two) and I felt a compassion for them that I hadn't known bef0re.  Because now I am on the other side.  Now I can see it -- I'm not swimming in it.  I did NOT have to calmly struggle to get his stiff, unyielding legs into a shopping cart, wonder if he was going to make it through the next place, sing him songs to soothe him through a store, buckle his rigid body in and out of the car seat a dozen times, stop for food when he was hungry or wonder when or if he was going to fall asleep on the way home.

So it was a peaceful trip.  

I missed him in places, of course, because he always says hi to people, and it is so stinkin' sweet.  But the freedom is unreal.  And I will get to do that each time, unless he has his own appointment.

Thank you, school.  For giving my little man a worthwhile place to be during the day, and giving me the freedom to sort my life out and start moving forward again.

Ahhhh, forward.

I am grateful!

Thanks for reading all my mumbo jumbo!  Here's a video that shows how tough this little man is.  Have a great week!

Kindergarten Strong

Most parents assume that their child(ren) will go to kindergarten when they turn five years old.  I mean, it's just a standard part of society, right?  It's the norm.  They don't think twice about it.  It's just what happens.

Well, for Brady P, that wasn't just going to happen on its own.  There was nobody, absolutely nobody telling me from the start, "Oh, your son has Down syndrome?  That's no problem for the educational system.  He'll just blend right in.  It'll be fine."

Nope, nobody.

Because it's true.

Everybody had to work hard:

• Braeden started learning more and more after his health improved around 5 months old after heart surgery.  
• He continued to hunger for the praise of finding the right letters, numbers, colors, shapes, etc before he was two years old.  
• He worked with therapists to progress in his ability to say letters and sounds.  
• Grammies, Grampies and Dad worked with him on all of their special talents.  
• I worked extensively with the Copper Country Intermediate School District and the Grant Township School District to set up what we might call "Special Education" in the one room schoolhouse.  *Ummmm, excuse me???  The one room schoolhouse right in Copper Harbor???  You bet your sweet behind!!!  We didn't even have to move to a bigger school system!!!*
• This summer, Braeden and I worked 4 days a week on holding a pencil, drawing letters and numbers and cutting with his special scissors because that was the biggest recommendation before he started kindergarten.

Yesterday.

Yup, little Brady P, almost 5 years old, is in kindergarten.  Right now.  Allowing me to write this weekly blog in a timely fashion, work on my career, work on my house, get out for adventures, make nutritious meals, go to town by myself and just plain feel like the door swung open on my mom cage.

Let me tell you a little bit about yesterday.

We both got up earlier than usual because the bus was due at 7:40 am.  Yup, the bus picks him up in the morning!!!

He seemed chipper, got ready for school, put on his backpack and I took a couple pictures of my little kindergartener.

Workin' it!

We got to our bus waiting spot, the bus came, I took another picture, buckled him in and kissed him on the head.  Then his dad went on and wished him well too.  Aaron and I both cried.  I high-fived him as the bus drove off.

Ready to jump on that bus!

Then I walked up to my door bawling.  I sat down on my couch and bawled.  I looked at his cute pictures from the morning and bawled some more.  I thought about all those bullet points that I just mentioned above and I bawled.  Tears well in my eyes as I type this now even!

I was so proud of that little boy.  He is so independent in his spirit.  He is so smart.  He tries so hard.  He loves to feel like one of the kids, and the kids just love him.  Yes, he is extra work (just ask his aids at school!), but he is so worth it.

At his very own desk!

He came home yesterday with a smile on his face, and woke up today ready to do it again.

If you have been keeping up on this blog, you know how much I have dedicated my life to that little boy over the last five years.  Him going to kindergarten was never assumed.  It was not even expected.  But you know what?  He deserves it.  I deserve it.  His family and this community deserve it.

I am so absolutely grateful for everyone who helped make this possible.  It was a giant team effort held together by a mama who refused to give up.

People always told me I was a super mom or an amazing mom or that they could never do what I was doing.  I never knew how to respond to that because I was in it.  I was just doing what I had to do.

But now, looking down from the climax of this achievement, I can see what I did.  I pushed the whole time.  And the support from my friends, family, community and school districts were pivotal in keeping me strong enough to keep moving forward that whole time.

I seriously can't believe it.  Brady P. has shown me once again that anything is possible.

And again.  I'm bawling.

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.

Basketball Jones

Braeden learned something new at recess today.  I'll let him tell you about it.

Hi.  I'm Brady P.

I am really cool.  I went to school today with my friends.  It was fun.  Guess what I learned at recess. The basketball hoop!

Rocking the little hoop

It was really fun.  Mr. North watched me do it a bunch of times.  He made me feel really proud like I was good at it.  I am.

I don't make it through the hoop every time, but I still like to throw and throw and throw and throw.  Sometimes I get it through the backboard!  Sometimes I knock the hoop, so it falls down.  Mr. North helps me put it back up.  He is nice.

Then my mom came.  I took her hand and pulled her close to the hoop, so she could watch me throw.  I stood really close underneath, so I would hopefully make another hoop to show her.  It took a while, but I made one, and they both cheered!

Mommy asked if I was ready to go because we had to go to town, but I just wanted to keep throwing the ball at the hoop.  I made it three times in a row even!  My mommy cheered cuz she was really proud, and I was proud too. 

After a while, I got a little bit hot, so I threw three more times then put the ball bye-bye.  I remember where it is, so probably next time I go to school, I will throw some more.  My mom will be mad because she thinks I have to get to school on time every time, but if I see the ball, I am going to throw it.

I hope we go back there before school next week.  I'll have to practice saying the word "basketball," so Mommy knows what I'm saying, and she can take me there.  She isn't very good at making it through the hoop, but I like to watch her try too.

Okay, see ya!