Literacy and Down Syndrome

These two manilla envelopes hold a world of possibilities! They teach reading to kids with Down Syndrome, and we all know the importance of being able to read. When I ask for donations to Gigi's Playhouse this is how it is spent. Sturdy, personalized laminated books are made for kids with DS who are learning to read!

A volunteer spends a half-hour with Phoenix every other week teaching him how to read. We also practice at home. (Phoenix's little brother Rio is even getting a head start on reading because he always wants to do the activities with us!) I just leave the envelopes out and Phoenix will climb whatever he has to in order to get his hand on these babies!

This is his family book. This is obviously his favorite book! He loves looking at pictures of himself and his family. It is easy to get him motivated about reading when he and his family are the topic.

It is helping with his spoken language too. Today he said "I see." It was amazing!

Right now he is matching words, so learning by sight. It is working! He knows what the words mean, if I say, "Give me Tiago", for example, he can choose correctly from a large group of words.

This book is about school. He also has books made for him on the topics of sports and food.

Here is a clip about Gigi's Playhouse. At 1:44 you can see a picture of Phoenix from when he was 1 year old posted outside the Playhouse. At 3:16 you can hear more about the literacy program.

SO PLEASE CONSIDER DONATING TO GIGI'S PLAYHOUSE by attending the Gala in February and donating to TEAM PHOENIX for the 5K in June! Or any other time of the year. 2011 calendars are also sale.

There are still kids who want to learn to read but don't have a tutor. Donate your time as a literacy tutor.

Training is provided and sessions run about 1 hour every other week. Email hoffmanestates@gigisplayhouse.org

Thank you for reading this, for supporting our cause and seeing the full potential in people with Down Syndrome.

Apple pickin'

• I clearly remember going apple picking in kindergarden. I was so proud because my mom was a chaperone!!! So I was elated when a friend of ours invited us to meet him and his new wife for a day of apple picking. This should definitely become a family tradition. Since last weekend, we have made apple cinnamon oatmeal, baked two pies and eaten plenty of apples.
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• Here is the pie recipe we've been using. It is super kid-friendly, I think, and very little clean up...and delicious! Our next adventure will be pumpkin picking and, you guessed it, pumpkin pie!
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• 1/2 cup apple juice, orange juice or white wine (seriously delicious!)
• 1/2 cup white or brown sugar
• 1/2 cup butter (one stick)
• 6 Golden Delicious apples - peeled, cored and sliced
• 1/2 cup white or brown sugar
• 3-4 tablespoons cornstarch (i doubled the amount and used all-purpose flour as a substitute)
• 2 (9 inch) unbaked pie crusts
• *try adding cinnamon, nutmeg, and vanilla if you'd like!

1. Preheat oven to 350 degrees F (175 degrees C).
2. Combine juice, 1/2 cup sugar and butter in a sauce pan and heat until melted. Add the apples and cook until fruit is tender.
3. Combine the other 1/2 cup of sugar with the cornstarch. Stir into the fruit mixture, then cook until thickened. Cool then pour into the pie shell. Cover with the top crust and seal.
4. Bake at 350 degrees F (175 degrees C) until golden brown.

http://allrecipes.com/Recipe/Apple-Pie-II/Detail.aspx?prop31=1

At Old Navy

Something about hats just makes them dance!

Mirrors too!

Next time we don't have anything to do I'm taking the kids to Old Navy. Wow, they had so much fun! And did you know that they have interactive displays there??? (Well, my kids make everything interactive, even a few preppy dressed manikins and their dog!) Poor Tiago did not join in the fun. He was strapped in the stroller!

CODE YELLOW

Two Perfect Little Angels!

We Can Do No Harm!

The Reality- Double Trouble!

Off topic- This is what Phoenix had gotten out of the fridge and planned to have for breakfast!

I found out what a CODE YELLOW was last week. I took the three boys to Target. I figured we had a large gap of time and I had very few items to purchase so I figured this would be a successful trip despite being outnumbered 3 to 1! Phoenix and Rio were very excited about the seating arrangement of the cart (they could sit next to each other) and Tiago was just as excited about sitting in the basket part! There was one problem, the straps kept coming undone so Phoenix and Rio were got loose! They were actually very well behaved. I was impressed. When they strayed too far from me they came back and had fun playing and laughing amongst the clothes rack. And then suddenly Phoenix was gone!!!!!!!!!!!!!!!

Rio and I thought we heard his "Dah, dah, dah" but we couldn't find him. I found a sales associate and they radioed over the walkie talkies "Code Yellow", which means they lock all the doors (so that no one leaves with your child) and do a sweep of the store aisle-by-aisle. The lock down part helped me not freak out. They didn't find him right away, but eventually he was found 2 feet away from where I had been standing looking at the clearance rack. He was hiding between the boxes of car seats!!!

Even crazier was that as soon as he was found, RIO TOOK OFF! And they had to call out another "Code Yellow". Now I was completely embarrassed of the behavior of my kids. Luckily, we found him almost right away. What was he doing? Hiding. WOW! I'm amazed at how quickly Rio made the connection "I hide. I get attention."

From now on, before we enter the store, two rules are reviewed.

1- Stay close to Mama and/or Papa.

2- No hiding!

Never Let School Get in the Way of an Education

Phoenix giving a hearty "AHOY" with his maties!

Adorable Rio, although he prefers the adjective "cool".

Yummmm. A Chicago-style hot dog!

Curly fries for "Curly".

Just a few of the things I found in Tiago's mouth!

When Pheonix plays hookie it is always with the best intentions!!! Last Friday he took the day off, although at one point in the morning he was standing out at the bus stop (our driveway) in his underwear and backpack, and we headed downtown to see the Tall Ships (historic sailing vessels from around the world, we just called them all pirate ships though!) at Navy Pier.

Phoenix's first day of school

Today will be Phoenix's first day of school. In a few hours, at 11:47am to be exact, the "short bus" will pull up to our driveway and whisk Phoenix off to a special education pre-school. Mom, Dad, Grandma, Grandpa and his two little brothers will be cheering him on as he steps on that bus, recording the moment with our cameras and mapping out his life according to our hopes and dreams for him. Yet here I am thinking about the RETARD BUS.

Let me start by saying that I truly am ok with having a child with special needs. No pity needs to be given. But sometimes I'm just slapped in the face with how I was before Phoenix. I don't think I personally made fun of the "'tards", but I'm sure that I laughed along with whoever was cracking the jokes and I definitely did not stand up to anyone who was making fun of them. One can chalk it up to "kids being kids" or that it was "harmless" (yeah, right!!!!) but I stood on the sidelines and let it happen. I know part of it was "the fear of the unknown/people different from me", but it is my indifference and apathy that haunt me. Why don't I understand or feel empathy until something happens to me personally (i.e. having my own child with special needs)?

Today will be an exciting day. We got a great deal on a DIEGO backpack and Phoenix will be a stud in his blue button-down pilot shirt, navy blue POLO shorts and his new navy blue CROCS. His tan face, curly hair and frequent smile will charm everyone he meets. But there is a lesson here that I wish I had learned as kid- to love, respect and give dignity to ALL people (John 13:34-35).

"Dots, No Dots"

Ok, so I know that he really just says "N...Dah" and "Ya...Dah" but I still think this is a HUGE deal!!! He´s actually communicating using spoken language! And I wasn´t even trying to get him to say anything. We were just separating the puzzle pieces and often times I DO say "Dots, No Dots" but this time I didn´t so HE DID!!! I have noticed so many more "words" this week including green truck, toot toot chugga chugga and shake. This is soooooooo exciting!!!

I have recently started using strategies from the book Play to Talk. For example, I talk a lot LESS and WAIT a lot longer for him to respond in any verbal way, then I imitate his response and try to keep the dialogue going as long as possible. I must admit, it is so FUN because he loves that I "speak" his language and it allows him opportunities to practice verbalizing and learns that making sounds gets a reaction. I highly recommend this book because the strategies are easily adaptable and its all about respecting where you´re child is at instead of constantly thinking about where they SHOULD be. Check out the website.

Famous Phoenix

by Gøran Nielsen

by Inge Wahl

The local papparazzi are always after Phoenix! And I LOVE IT! These are just two of the photos I recently received! I think both are great photographers but it does help when the subject is my beautiful Phoenix! Wherever we go people I don´t even know say, "Hi Phoenix!"- the grocery store, the swimming pool, a local event, EVERYWHERE. He was even invited to a cabin for spring break while the rest of us stayed back in town! Yup, he´s famous (at least in this tiny, isolated, depopulated fishing village on the edge of the earth in arctic Norway)!

Sharing Phoenix

The Phoenix we know and love!

Here in Norway the state offers something called avlastning, which translates literally as "relief". All Norwegians have a right to avlastning but families with a special needs child are greatly encouraged to take advantage of it. The topic is brought up every time Phoenix goes for a check-up, Have you started with avlastning? We have always been hesitant about it; we never felt like we NEEDED it and I think we were somewhat offended by the thought of "relief" from our child. We love Phoenix, enjoy spending time with him and he is our responsibility! And I even felt like they were saying that we don´t spend enough time with the other kids because Phoenix demands so much attention, like he´s just work or something. While those were assumptions, I still feel parts of those assumptions are true, that there is some internal change that must take place in Norway´s attitude towards the disabled.

At our most recent "early intervention" meeting we were again encouraged to consider avlastning. Our response was that we haven´t taken advantage of it because we don´t know anyone that fit our criteria. Soon after that meeting one of the people attending offered to be our "reliever". She has a husband and two young girls and a cat and she was already excited about taking Phoenix snowmobiling at their cabin...and that is when my attitude toward "being relieved of Phoenix" changed.

I am choosing to see avlastning as awareness. Of course it is AWESOME for Phoenix to be the little brother and get tons of attention and do things he loves like snowmobiling. And it was nice to just have the two younger kids and more one-on-one time with Rio. But what excites me the most is the impact that Phoenix will have on this family. That two adults and two young girls will see a person with special needs as an individual who deserves respect and dignity. That someday when someone uses the word "retard" or makes fun of the disabled kid they will stand up for that individual, because they knew Phoenix, because he was a part of their lives and they liked having him around. It might sound strange, but I´ve always had this feeling that I need to SHARE Phoenix with the world. I need to share him because people need to be EXPOSED to him, to people different from themselves, to learn from him and to be stretched by him.

So we shared Phoenix with a wonderful family this weekend; moreover, we shared our dream of a world where all people are treated with respect and dignity.

Treasure Hunt

Believe me, we're not always this creative!

Phoenix and his pirate booty!

Rio giving a hearty "A-hoy"!

Relaxing and enjoying the spoils.

Check out the pirate tattoo on his leg!

Better than Vigeland

"Angry boy"

Phoenix is much more interesting to these Japanese tourist than the sculptures!

Yes, they all wanted individual pictures with the boys!

Phoenix had another idea! A Wiggles dance instead!

Taken in the park by Daddy.

Oslo is home to an amazing sculpture park. Vigeland Park is the largest park of its kind made by one single artist in the world. Covering over 80 acres, Vigeland's lifework contains more than 200 works in bronze, granite and wrought iron.

All that is to say that while surrounded by this spectacular artwork, a group of Japanese tourists stopped to take a ton of pictures of OUR KIDS!!! I guess they thought it was cute that they were walking around the park in their matching rubber boots with a blue guitar in hand. I am especially proud that even though Phoenix looks different they still wanted to take pictures of him. I laughed so hard at the spectacle that I cried!!!

Here are more images from the park:

The Monolith

The Bridge

Google images

i <3 trash

Boys are so much fun! Look what they get into! Having fun in the trash containers!

They speak!!!!

I could watch this a million times! Rio's face is so cute. He's trying to get his lips to do what he wants them to do! And Phoenix is just adorable. AND SO GOOD at saying "Rio". We're so proud of him!

Dress-up and distress

Dress-up was so fun! Totally worth the money for these adorable outfits. The cowboy one is my favorite!

Distress. Ugh, I'm still recovering from the weekend. Ben has been out-of-town at a funeral for 5 days.  Thank God he's coming home tonight and for the moment I never want him to leave me alone in Tromsø again!

This part of the post is going to blame Tromsø for everything! But the big thing is that motherhood is not easy for me. Well, mothering two kids that is. My anger issues and now my compulsive overeating disorder (self-diagnosed but I'm definitely going down that road if I don't get some control) started with the birth of Rio. I'm sure I had these issues before but having 2 kids just brought it clearly to the surface (maybe a good thing). Oh no, what will child #3 bring out in me? 

So I went to the gym on my new membership. Kept getting interrupted by the daycare provider. But no problem. I was thankful that someone was watching them so that I could work out. I thanked them a million times and thanked Phoenix and Rio too. 

I was excited to take the kids to a free music concert, part of the Northern Lights Festival. We got kicked out basically because Phoenix BREATHED and I just flipped. THERE IS NOTHING TO DO HERE AND NO CULTURAL EXPERIENCES AVAILABLE FOR KIDS. I HATE IT SO MUCH. I CAN'T JUST GO FOR HIKE WITH THEM ALL THE TIME! 

I've been keeping it together for awhile as Ben has had shoulder surgery and can't help at all with the kids' basic needs (changing diapers, getting them dressed, pick up/delivery at daycare) and now him being gone. 

It was just too much. I really had a break down and it continued today. AND NOW Ben just called to say that his plane was cancelled due to strong winds (but he's a prankster so I'm sure if I actually believe him!). 

Anyway, I totally failed as a parent. I lost it on my kids in a really bad way. I'm constantly asking myself, "Why can't I do this? Why can't I handle it? Why am I so unsure about my decisions?" All in relationship to being a parent. Thank God I have good friends who can be honest with me about their own parenting struggles. Often I feel so alone in this struggle but I am grateful that I'm not. I just need to share it with people instead of just trying to handle it all on my own or with an apology. 

There is so much more but now its late and I'm just emotionally exhausted. 

Cute pictures though, huh? So grateful that there is so much joy to be had despite life's junk.  

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