Sunday, March 21, 2010

National Down Syndrome Day

well hi there!
Today is National Down Syndrome Day.
I figured to celebrate - we would post a zillion random photos from this past few weeks. It's his 13th month with us. It's amazing how time is flying by. So fast I cannot download the photos quick enough!


this is the view every morning when I am feeding Max at the high chair. My feet and his. I think his are much more attractive!
Both of us looking over the edge into the other's world
At Club 21 Max is being Filmed for an upcoming fundraising event. I was interviewed and filmed as well.
Standing and watching the balls pop up from this toy he loves
Looking up at the trees in March as I sip a decaf latte and sit with my husband and sleeping baby Max is in his stroller.
Huntington Gardens with both his mama and his papa. Getting ready to stand...
There it is again! These days he takes one step - and when he takes the second step he falls forward onto me usually.
more happiness
learning about flowers at huntington gardens
He LOVES water. There are water features at the huntington children's garden and he LOVES getting his hands in there.
he loves to whistle! Yes he whistles!
And he loves his "auntie" Christina! He got to see her TWICE this past week.
oh and more happiness!
last night we had dinner with Andrew and Kirsten ( we met at their wedding ) and Max got to play with Niko and Willa. Niko and Max became fast friends!

and guess where we are heading today??
Yep - more huntington gardens for us.
I think if we go every single day for a year we can see something new every time. We are going to find a shady spot under a tree and laugh and play.


we might just mix it up and go to the zoo - although on the weekend? ACK - so many people!

Max is such an AWESOME guy. I'm SO glad we don't live in a world where kids with Ds are automatically sent to institutions like they were not so long ago. And I'm so glad that we didn't know he had Ds when I was pregnant. If I knew and read all the stuff out there I would have had the WRONG idea about what Max was going to be like. He is NOTHING like what they say. he is MAX.

The biggest joy of my life.

Saturday, March 6, 2010

More Standing! And a visit from Grandma

Grandma DeeDee came for a visit on Friday. We met at Huntington Gardens. It was her first time there. We had lunch at the cafe and then I showed her the Japanese Gardens. We took Max out of the stroller and gave him some time on the grass. For those of you following the blog you know that Max has had some aversions to the grass. Which is why I started to go to Huntington Gardens every day to get him used to it. I was on a mission. As you can see here he is totally fine with it! YAY!!

my attempt at a family portrait while holding the camera....
And there he goes!! Standing - Standing and more standing! We used to count how many seconds he would stand - and it was roughly 6-8 seconds. We stopped counting! He just goes and goes and goes. He gets a thrill out of it and howls with joy! sounds like
eeeeeeeeeeeyahhhhhhhh!!!! and then - I do it back - and then - you guessed it - he yells back.
Once he plops down from standing he looks at me with a grin and I know in a matter of seconds he is going to stand right back up again and yell!

yep I'm yelling here. And that is what we call his superman pose. He throws his arms back while he is standing.
big hugs and laughter - I know what you are thinking....LOOK AT THOSE RED SHOES!!
I know - aren't they AWESOME!? They came from Grandma Marty for his birthday.
yep - you guessed it - more yelling with glee!
moments later - he is zonked out. p.s. that blanket is a god send from our Aunt Lois. HE LOVES THAT BLANKET! if he is having a hard time going to sleep we rub the blanket on his cheek and he calms down immediately. That blanket has super powers.

I think Grandma will meet us there again so Max can show her the Children's Garden, The succulent garden, the ponds, waterfalls, etc etc etc....and more standing....

Any guesses on when the little guy will walk??

He's taking one step unassisted right now......and then flings his body forward on me as he tries for another step or he sits back down and tries again....any time now!

Wednesday, March 3, 2010

Spread the word to end the word

photo taken when Max was 10 months old - at the Buddy walk with John C McGinley

So - today is that day again. March 3rd - The day we use to campaign the "Spread the Word to End the Word " ...............and that word is Retard.

Yesterday I was at the vet picking up my cat from getting a bunch of lab work done. She is doing just fine - but as Max and I were waiting for the bill - the gal at the front desk was talking about driving somewhere and how she is " navigationally retarded ". My heart did a flip and I had something like a hot flash and my hand went right over my heart and I gasped. As I was beginning to say something to her she then continued to say it AGAIN in the next sentence!
So I said - " Everytime I hear that word I feel very uncomfortable" and she looked at me and you could see that she immediately realized what she was saying.
We were just ooing and ahhhing over how cute Max was and then in the next breath out came the word retarded....twice.
I must say it was surreal.

She apologized and had a hard time looking at me in the eyes. I told her that I understand that she didn't mean anything by it and that in our culture we don't realize how the word is really hurtful to a group of people that cannot even defend themselves. It felt good to say that. It's hard to know exactly how to bring it up. Because I still have issues with wanting everyone to like me - and not wanting to create conflict ( I know this is surprising to some of you! )
And I don't want to come off as an ass - or be mean - or be over bearing. I just want to tell people how I feel when I hear that word and try to use that moment as a way to share what that word is and how it hurts.

There have been times - since Max was born - that people have used the words "retard" or "retarded" and I had to really think to myself - is this the place or time to say something?
And there have been times - when it was not.

At the park in the middle of a playgroup someone said it and I was too stunned to know what to do.

At an AA meeting two people at the same meeting shared about how retarded they were feeling in their lives and again, not sure how to deal with that. I felt it was inappropriate to tell someone how to share at a meeting.

A gal walked into a meeting wearing a t-shirt that read " borderline retarded but not that stupid. " I had never met her before and decided that the best solution for me was to wait and get to know her since she would be going there regularly. I figured she could meet Max and get to know him and then I could talk to her about it once we had more of a friendship.

This morning I read an article written by John C McGinley. He writes on this topic so well that I felt the need to share it here. Please click on the link and read it. Pass it on to someone else.

Max has been helping me to evolve as a human. And I have a feeling that he might be helping you out there as well.

People have asked me what word to use if you want to still make a certain kind of point but don't want to use the r-word. I've replaced the r-word with the word "ridiculous".
Do you have any thoughts on what word might be used instead??

Here - read this - let me know what you think.....

Tuesday, March 2, 2010

new developments

here's Max in front of the bamboo garden at Huntington Gardens last week in the grown up stroller!

so we've been going to Huntington gardens almost every day. And this week we changed his car seat to one that stays in the car for bigger babies - and that means changing his stroller to the actual bugaboo seat instead of just putting the car seat on the stroller. This is a BIG change in many ways. The biggest one is that he would take a nap in the car and I would take him in the car seat and he would just keep on sleeping. So we could be out for 2-3 hours and he would nap almost the entire time in the stroller - in the car and never wake up.
Now I have to take him out of the car seat and then put him in the stroller and strap him in - which means he wakes up.
So.....long story short - I no longer leave the house at the time of his first nap like I used to. This way - he actually gets his full nap and it's undisturbed. But it means we had to stop going to my Monday women's AA meeting, my Tuesday Meeting at Club 21 where I had just started to go to a weekly volunteer meeting, Max's Wednesday playgroup with mom's club, And Friday's playgroup at club 21 he misses half or all of it.
And his second nap is from about 2-4 or 3-5 so we've been missing the Thursday playgroup in the afternoon and Friday's Music class.
So basically we are missing everything he is used to doing with me every day.
I realize that this is going to change once his naps go from 2 down to one nap but it's a big adjustment.

on another note - Max is starting to take his first steps!!!
Oh yes
one, two and three.
He is trying and trying to walk. It's amazing to see.

and - on yet another note
Jerry and I are celebrating our 8th year together. Today was the day we met. At our friends wedding in La Jolla. This morning we were sharing with each other that this is the best year yet. It just keeps getting better and better.

Max started OT today to work on his fine motor skills. This is the only thing that he has a slight delay with. We are working on his pincher grasp mostly. But feeling glad we got this started right when he needed it.

one more thing....
and an update on the eye surgery - we have an appointment this thursday with another doctor and another appointment on March 22nd with yet ANOTHER doctor. We are basically seeing every doctor that our friends have recommended and we heard the names of these more than once by people we love and trust. I should write a short paper on each doctor and what we like and don't like about each of them. I'm sure you know me by now - I will be posting about all of them here real soon.

thanks to everyone who sent support and love our way. We need all of it!
We feel surrounded in a bubble of love for sure. I am SO glad this blog world, e-mail, phone and actual face to face human interaction exists! We are blessed with many friends and family members who are praying for - loving - and thinking of Max and that means the world to us.

Today - early this morning our friend Audrey had to take her daughter Estelle in for surgery for 3 different procedures. I was a bit emotional about this because I am close to knowing what this is like. I haven't heard anything yet - but we are sending them a lot of love tonight. Audrey is one of the founding members of Club 21. Her daughter is an AMAZING and BEAUTIFUL little girl. I love to watch her - she defies what you think it is to have Down syndrome. She is articulate, clear when she speaks, and a real "pistol" as her mom calls her. We love this family and we hope all is well tonight.