Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, December 29, 2013

Updating about the AAAA's



I think I am long over-due for an update on each of the kids, so here goes!

Angela: I don't blog about Angela as much now that she is in  high school. There are parents and kids from her school who occasionally read the blog and Angela needs some privacy. Angela is a Jr. in high school this year and every day reminds me that in just a few months she'll be turning 18! Can you believe it??? Angela just finished her soccer season, and she lettered again! I'm so very proud of her. She's willing to try just about everything. Just before Christmas she started her floor hockey season and is anxious to find out which team she'll be playing on. Angela and Axel both did cheerleading for the fall but I think we are going to opt out for the second part of the season. She and Axel want to play basketball and we can only go so many directions at once! She loves to spend time in our sensory room dancing to music. Of course "One Direction" is a favorite. She's also liking Lorde and Katy Perry.

Axel: Axel is a 6th grader this year. He has grown up so much more than I could have ever imagined. He continues to make up for lost time. When we brought him home he was very much like a 4 year old, playing with toddler toys and going through all the developmental stages he'd missed out on. Now I would say he is very much like a 7-8 year old. He still loves Thomas the Train but his Thomas play is becoming more sophisticated. Axel really loves our sensory room, mostly hanging out in the ball pit, burying himself up to his eyeballs! He doesn't have a lot of time for the "little boys" unless it's to boss them around, but he can be very helpful with them too. Axel really likes to play Angry Birds and has figured out how to download every version he can find. Today I received a notification from one of our iPads that our email to customer services wasn't very clear and could I please call them to discuss my complaint. In other words...Axel emailed them. HA! I am frequently having to adjust the security settings on the iPads to limit where Axel can get to. He is very quick to figure out any piece of technology! Axel's speech is slowly coming along. We hear more words and phrases coming out now and then, but most of the time we get Axelese, which unfortunately none of us understand.

Abel: Man has this boy grown! He is going to be a really big guy! When he came home he was wearing size 4 pants, and he's now wearing 7 huskies. He is one solid kid! Abel is doing really well with speech therapy, where we focus mostly on communication. His speech therapist is doing a lot right now with auditory training, teaching him to tune into and recognize sounds he was missing before he got is hearing aids. He is doing well with Occupational therapy too, where they've been focusing on sensory integration and his fine motor skills. When he came home he could not do any types of fasteners, but now he can button his pants by himself and is learning to zip his jacket. Abel's behavior has improve significantly in the last month! He is starting to play more appropriately with toys. He loves to spend time in our sensory room, where is favorite activity is to be thrown into the ball pit or swing on his tummy.  After much negotiation with our school district we have recently come up with a new school plan for him. We'll be doing a mixture of homebound and school-based services as he learns to learn from people other than me, working up to full days in school. In the fall he will go to the ASL class where Axel currently attends. I can't wait for him to go because his communication is going to explode!!!

Asher: Asher is growing up! His communications is really taking off and he can tell us so much now, all in sign! He can tell me he wants me to pour some of my drink into his glass, or that he wants me to come sit by him. He is experimenting more with making sounds. He tries hard, but I don't really expect that Asher will be much of a talker. If he proves me wrong I'll consider it a bonus. We adore Asher just the way he is! Asher is really enjoying 1st grade. Its funny to see this tiny 9 year old boy who is in class with 6 and 7 year olds who tower over him! A few weeks ago he had a swimming day at school so I went along. Oh he had so much fun! I really like the program Asher is part of this year. He has a 1:1 assistant who is fluent in ASL which has been the key to increasing his vocabulary.

Our Christmas was grand this year. It was a true pleasure to have big brothers Noah and Tyler with us for the week.






Monday, December 23, 2013

We did NOT fall off the planet!

We are still here. Really.

I'm in a blogging funk lately. There is so much going on and I don't even know where to start. So tonight, how about I post some pictures that should have been posted months ago?

Lets to back to early October, shall we? Our trip to the pumpkin patch! The Apple Junction in Hastings. We love this place! It was our third year and we've been happy every time. It's not super crowded and there are several different things to do. It isn't huge, which is just fine for us. What's more important for our crew is getting them out and experiencing life!

The water pumps. Anyone who knows Asher knows he was totally obsessed with this! I loved that there were enough pumps for all our kids to participate at the same time. Notice Abel is watching closely how this is done. 

This is the look he gives when you tell him to do something he really doesn't think he wants to do. 





 


Enjoying the ride out to the pumpkins.



This is an observation tower that is about 30 ft in the air. Two years ago we  had to DRAG Axel up the steps because he is not very fond of heights. This year he went up pretty easily, but no, he was NOT going to look at at the beautiful view. Notice Abel is wearing a backpack? It has the water bottles in it and he really liked carrying the weight around. And yet, he hates wearing a weighted vest. 



Asher loved the inside of this wooden train!


Don't tell Angela, but this is the closest she's going to get to driving. 


Driver negotiations


Asher absolutely loved the wagon ride. All that vibration to soak up with his body. Heaven!!! He put his face on e.v.e.r.y.t.h.i.n.g. to test the vibration levels. 


The kids were all so proud of their pumpkins! Except for Abel. He was a bit puzzled by this whole experience. Thankfully it wasn't super crowded so he didn't have to deal with tons of people. 

I love this one. Classic Abel. "I am NOT putting my face in that thing!"

Saturday, December 14, 2013

Remembering Charlotte

One year ago today, our nation suffered the tragic loss of 20 children and 6 adults at Sandy Hook Elementary School.

Today we remember all of them:

Charlotte Bacon
Daniel Barden
Rachel D'Avino
Olivia Engel
Josephine Gay
Dylan Hockley
Dawn Lafferty Hochsprung
Madeleine F. Hsu
Catherine V. Hubbard
Chase Kowalski
Nancy Lanza
Jesse Lewis
Ana Marquez-Greene
James Mattioli
Grace McDonnell
Anne Marie Murphy
Emilie Parker
Jack Pinto
Noah Pozner
Caroline Previdi
Jessica Rekos
Avielle Richman
Lauren Rousseau
Mary Sherlach
Victoria Soto
Benjamin Wheeler
Allison N. Wyatt

The first name on that list, Charlotte Bacon, is the daughter of my high school classmate, Jo Jo and her husband Joel, sister to Guy.


Our hearts ache for their loss knowing there is nothing any of us can say or do to make it better. Nothing that can bring Charlotte back for them, nothing to erase the memories of that day from their hearts and minds.

What we CAN do is remember Charlotte and honor her memory. Charlotte was a lover of animals, especially dogs. In the wake of the tragedy, therapy dogs were instrumental in helping the family and community members deal with their grief, loss, fear and anxiety. Charlotte's parents started Charlotte's Litter. The goal of the program is " to advocate for animal assisted activity with Therapy/Comfort Dogs and their roles as supportive friends and trusted companions.  We strive to create turnkey programs that make Therapy/Comfort Dogs accessible to every man, woman, and child."
Orange Dog by Charlotte Bacon.
(courtesy www.NewtownKindness.org)
If you would like to help children who have suffered through a traumatic experience, please consider contributing to Charlotte's Litter. Your tax deductible donation can be made by going here.


Monday, December 09, 2013

Happy 3rd Gotcha Day Axel!

Three years ago,
on December 9th, 2010
in the city of 
Kragujevac, Serbia
Axel and I woke up early in our hotel room. 
We got all dressed up for our big day.


We walked just a few blocks away to the social center. 
There all the papers were waiting or me to sign them.






All the important people were there. (they're the same people who were at Asher's adoption ceremony exactly one year later!) 

You were declared

Axel Djorde 




That done, it was time to go down the street to the police station.
You loved walking with your legal guardian. 

The police station is a HUGE building!

We applied for your new birth certificate,
passport and Certificate of Citizenship. 

We had to wait a long time. 
Mostly because they had to re-write documents several times
Trying to get the right spelling of my name.

Finally it was done! Just nine days and you were officially my son! 

Who would have known how much different our lives would be just three years later? 
Who would have predicted how tall you would grow,
how much you would learn,
how much you loved life?

You're an amazing young man, Axel!
 I am so proud to call you my son!!


Thursday, December 05, 2013

Happy Adoption Day Asher!

Two years ago today
in 
Belgrade, Serbia

Asher walked out the doors of the institution
where he had spent 2,591 days.
7 years, 1 month and 5 days. 
His entire life.

We got into a car for the drive to his birth city
Kragujevac, Serbia



I signed the adoption decree

The ceremony was held







And when it was all done....

Asher 
was legally declared our son.

Happy Adoption Day Asher! 

We sure love you!

Monday, December 02, 2013

Refusing to communicate

Axel is in a full-immersion ASL program for deaf and hard of hearing kids who have cognitive impairments. He is the only child in the program who is hearing. This is his 3rd year in the program. Using ASL, Axel is able to tell whole stories, using much facial expression and variations of his signs to change their meaning.

At home, Axel refuses to sign. We struggle to get single signs out of him. I often play dumb when he does this, only responding when he finally, begrudgingly, gives the most basic of sentences, "I want more pancakes please." with much drama as if it is a lot of work for him. But oh Axel, I know better.

Tonight Axel headed to their bedroom. As he was going down the hallway, when he thought he was out of my sight, he silently motion for the little boys to follow him.

Hmmmmmm

I slipped on my spy boots, snuck outside and around to their bedroom window.

Axel had wanted to play "School" and needed students! He sat on his bed as the teacher, with the little boys on the floor in front of him as the students. He was signing away.

"Asher. What month? November! Right! It's November. Look! New month! December. D.E.C. (spelling the abbreviation) Look. Count. How many days? 1, 2. Right! Dec 2nd. Today. Today."

I tried to make a video but it was too dark from outside for my camera to pick it up without moving to where I would be discovered. 

Sunday, December 01, 2013

Three years ago today

Tonight we sat down with Axel. He has enough language now that maybe he can tell us some things. He can at least understand a lot of what we're telling him.

"Axel, do you remember a long time ago, you lived in a different house very far away? Do you remember, there was a different mama and papa?"

I showed him some pictures. They were pictures of his foster family.

"One day Mama got on a plane and flew very far away. Then I went to a house and knocked on the door, and a little boy came to the door. Do you know who that little boy was?"

"Me!" Axel signed.


"Yes, that's right! It was you. You were a little tiny boy. And I came to the door and said, "I am your new mama."