Wednesday, March 24, 2021

The Lucky 95%

I know I've touched on this before, but I have the kid who says hi to everyone.

He waves ecstatically to each vehicle that drives by when we are on a walk.

He waves and shouts, "Hiiiiii!" if he hears a car alarm go off or a car beeping when it locks.

He hugs his friends when he sees them.  Sometimes two or three times!  He even hugs strangers when the universe grants permission. He is no dummy. He is connected to more than we can see.

Right now he is six-and-a-half years old. I do not tell him that he can't say hi to everyone. I won't tell him that he can't give random people hugs (especially once the pandemic is over!). I will not hinder his innate, loving, accepting, inclusive behavior because that is not my place.

Someday, he will be an adult that does this.

How do I feel about that?

Kids are one thing, but as people become adults, things aren't so cute anymore.

When I was growing up, or, heck, any moment before Brady P. came into my life, I was afraid of people who said hi to everyone.


They just said "hi" and waved ecstatically, and I was afraid!

All I knew then was my perspective. I was obviously insecure with myself. I absolutely did not take the time to understand other people who seemed to be different than me.

Now I get to.

My previous experience gave me compassion for the people who don't say hi back to my super-friendly little boy. Most people do, by the way. Probably 95% of people are absolutely charmed by him.

The rest pretend they didn't hear him.

That used to be me!

But I can't think, "Geez, what a jerk!"


I just get to think, "Yup. I used to be like that. Maybe they will understand someday."

But maybe they won't. Maybe it is not their journey, and I cannot judge. That is not my role.

Or any human's role!

We are all just here doing the best we can with what we have and what we know.

That's exactly what Brady P. is doing.

He lifts the hearts and spirits of 95% of the people he meets just by being himself.

It's true that you can't please everyone, but 95% isn't bad.

That other 5% may or may not figure it out someday. I was so ignorant about it that the type of person I used to turn my back to came out of my own body and now we spend nearly every day together.

Ummm, message received!

And now we get to share that message with others.

Sunday was World Down Syndrome Day. 3/21. It stands for Trisomy 21 which means there are 3 chromosomes on the 21st pair. Pretty clever, hey?

It's also the first day of spring, and this year in the harbor, it was glorious, so we had a little parade to celebrate!

You'll have to visit the blog to see the video. Thank you to my friend Steve for putting it together!

And considering the fact that I am still a nut that waves to random people, I will be proud of him when he does that forever too.

Wednesday, March 17, 2021

The No Zone


How are you doing?

I can't hear you.

I said how are you doing???

Oh. Nope. Still can't hear you. Guess this reading thing is one-sided.

Well, I hope you're good. At minimum.

If you're not, then you just have some things to work through. It might be one thing, it might be one million. But you have to start somewhere!

Best of luck!

Parenthood is quite interesting. It's as though your kid knows when they overcome a hurdle or milestone, so things can get easier in one department, but then they make it harder in another.

Brady P. is 90% potty trained, and I am so proud of him! His sentences are flourishing. And he no longer says "Mup!" to me 1,000 times a say. Just more like 5.

If you don't remember, "Mup" is sort of his game of "gotcha!" And he really would get me. Like, every time.

He is also, for the most part, doing a really good job of staying on task to get ready for school. That's imperative. I don't wake us up with enough time to dilly dally. Just enough time to do all the things and run down to the bus.

So what's the trade off?

The "no" phase. 

Even Miss Liz, his aide as school, noticed.

"Hey, Braed, are you ready for supper/ to getting dressed/ to go out for a walk/ to see a friend/ to use the potty/ to eat your yogurt?"

"No, Mummy. I said no."

And he means it.

I have to do a lot of bribing and deal making with him. For instance, if he wants me to say yes for him to watch his iPad, then he needs to say yes to peeing on the potty first.

"No, Mummy. I say no."

"Okay, then. I say no iPad. When you show me you filled your potty up, I'll give you your iPad."

Then it goes either way. It depends on his priorities at the moment, I guess.

Liz keeps reminding me that we will get through this. We will. It just gets a bit annoying because we seriously can't go anywhere on the weekends. I mean, not even for a walk! He spent the last two Sundays in just his undies!

Now you can condemn my parenting choices for that, but I know that he just wants to have his way sometimes. He works really hard at school, on the potty, getting ready for school, reading his evening book and speaking full sentences, that I just have to give the kid a break.

I mean, that is a lot even for a normal kid. This child has to work much harder to do things that most kids do. For instance, he tries sooooo hard to get his sentences right (and out quickly) that he rolls his eyes up and stutters several times before he spits it all out. He is processing a lot.

So I will give him a few weeks of "no" (hopefully that's all!) because I am so proud of him, and he is really developing quickly in many areas. 

He just needs to feel like he is in control sometimes, and he'll get over being so negative about basic daily life. It's really not that fun, and he knows it.

But he can do what he needs to do. I mean, he's six!

Just to prove how hard he works, here is a video Miss Liz made of him during one recess. Just one! And he's on snowshoes!

If you can't see the video in the email, please find it at Downs by the Bay.

Have a great day!

Thursday, March 11, 2021

In the Dugout

Hey there.

My jobs have taken their toll on me this week, so I'm on the bench.

See you next time!

Wednesday, March 3, 2021

100% or Bust

Let's clear one thing up right now.

If you ever see a family with a child with Down syndrome, don't ever, ever feel sorry for them.  Don't think that they wish things were different.  Just know that those parents and siblings (if they have them) feel so blessed.

They feel like this extraordinary person in their life is truly a gift.  They know that they have already learned so much more than they ever would if things would have been "normal."

I speak from experience, and it echoes for everyone I have ever talked to who has this special person in their life.

Nobody would change it.


If you happen to be somebody who is in this situation and you would change it, please feel free to let me know.  I haven't met anyone like that before.  I am very open-minded and I will listen.

Now let me tell you how cool my little person is.

He likes to do things.  Lots of things.  And he is surprisingly good at anything he likes to do.  I believe that's because he does those things 100%.

It's either 100% or not at all. 

I suppose he will go through the motions for some things if he has to for a reward, but otherwise, it ain't happening.  (Like getting his boots on for the bus some mornings... ugh!)

Take the simple act of eating a piece of chocolate.  Like most normal human beings, he loooooves chocolate.  He doesn't get it often, but when he does, he sits down somewhere, holds his pinky up, takes tiny bites and (from what I can tell) thinks only about how wonderful that chocolate tastes.

He focuses 100% on that chocolate.  That's smart.  And it's being in the moment.

The other day he found "Baby Sadie" a doll who helped him learn how to potty train.  He picked her up and fed her a bottle.  He rocked her, kissed her and hugged her.  He petted her head and talked to her.  Then he laid on the chair with her and covered them both up with a blanket for a rest.

What an angel boy.

When we play a matching game like Memory (we have three different ones!) he is all in.  He pays so much attention that he remembers cards that I completely forgot where they are.  He has his favorite cards out of each stack and, when he finds it, he puts it in his little corner and tries to find the match each time after.  He is so diligent and sharp.

The other day I set up the hockey net, brought up our sticks and Braeden found the pucks.  We took turns shooting.  He was so into it that I made us each little signs with our numbers and he said they should go on our backs.

I obliged.

He was great about taking turns.  He positioned himself so well that he made 90% of his shots, and he even showed off some stick handling skills!  He was really proud of himself, but do you want to know the coolest part?  He was really proud of me too.

I did not make all my shots because I went farther back and tried fancy moves.  But when I made it, he squealed, "Great job, Mummy!"  And he meant it.

He doesn't do it if he doesn't mean it.

And low and behold, he is one of the best impromptu dance party buddies I have ever known.  

When I get a wild hair and ask if he wants to have a dance party, he is down.

Now I'm not going to pretend that we just turn on some music and dance.  Oh no.

We dance party!

We turn it up, plug in the moving colored lights, put on a skirt (sometimes with jingles), don a wig or hat, push on some sunglasses and, if it's dark, break out the glow sticks.

Not only does he love the dress up part, he loves to show off his moves.  I mean, we can't just look like good dancers, we have to be good dancers!

I'd like to throw up my hands and say that I don't understand how he comes up with such awesome moves, but I think it's nature and nurture.  The kid has moves.  He choreographs his body into intricate patterns.  Now, we're talking floor spins, inversions, splits, bends and the whole what-have-you.

The kid is on fire!

He just gives it his all.  And why wouldn't he?  What's the point of going through the motions when he can be really good at all the things he likes?  What is stopping him?


Absolutely nothing.

And that, my friend, that is the beauty of it all.

A person with an extra chromosome knows what they like, and they do it with all their heart.  To them, there is no other way.  And for us 46-chromosome people, it truly is a gift to watch someone live that way.  We would be silly if we didn't try it ourselves.