Monday, December 23, 2013

Wheels = FREEDOM!

Our girl has got wheels, and she is PROUD and HAPPY!

This picture was unposed. Just her sheer joy caught on camera!

It has been awesome to see her be so happy to be wheeling around this past week.

When the wheelchair company came a couple of months ago to fit Tessa for her wheelchair, they left a demo chair for us to practice with for a couple of weeks. She was definitely excited to be driving around a little, but she was also quite frustrated about not being able to drive it well. It's not easy teaching a one-year-old how to drive!

So it was our expectation that there would be some frustration and a bit of a learning curve when Tessa got her own chair. But she surprised us all by taking right off, navigating the reverse and all the turns around the house by herself. She was a pro within minutes!

The wheelchair guy made all the necessary adjustments to customize her chair, and as soon as he left Tessa took off towards the kitchen. Her first stop was a total surprise to me- the junk drawer. Of course! What 2-year-old doesn't want to dig around in a treasure chest like that?!

It was so endearing to watch her for the next 20 minutes, taking out items and examining each one and opening and closing the drawer a million times. She's been watching all of us open that junk drawer (which is the MOTHER of all junk drawers) multiple times a day but was stuck watching from her view from the floor. I love that her new independence is enabling her to satisfy her curiosities!

Tessa's chair is small and when the chair is in normal position, she is eye-level with other kids her age. But she can also push a button and raise the chair to counter height. As you can imagine, she LOVES this button. I've found her several times this week carrying things around that she has gotten from high places that even the other kids can't reach!

She asks to be in her wheelchair as soon as she wakes up and then just takes off, exploring and figuring out how to do new things like....

Coloring on her wheelchair tray with Merin

Getting crayons from the art supply box

Giving little rides to her older sister

And getting drinks on her own

We have some changes to make so that life is more wheelchair accessible for Tessa. The big ones are a new house and new van. Yikes!  But I'm thankful that although we live in a two-story house, our downstairs is completely accessible for Tessa's chair. We will move in a couple of years to a one-story house, but for now it's perfect for Tessa to access almost everything she needs independently at this age.

God has provided so much for us and we are deeply thankful for this precious beautiful daughter He has given us. Life with her is adventurous and sweet!

Wednesday, December 11, 2013

Tessa is on the move

Tessa's has progressed so much in her mobility. When I first met her she couldn't even sit up in a bumbo, much less move around. 

After mastering the bumbo, her first attempt at mobility was scooting on her back: 

Then her main mode of mobility became rolling..... rolling......rolling. She started slowly at first in June and now she's like a speed steamroller. Merin and Elias try to roll with her but their legs always get in the way so Tessa always wins the race. 

The other day at Walmart Tessa was begging me to let her roll down the aisle. But I just have to draw my boundaries somewhere and just couldn't let her do that. I'm okay with the filth on my own floors but I'm not so sure about Walmart. 

Here's a video of my rolling queen: 

Isn't she awesome!?

A challenge has been figuring out how Tessa can go from laying on the floor to sitting up independently. She started sleeping in a twin size bed recently that has a bed rail on it. One morning I walked in to get her and she was sitting up! She had figured out how to swing her little arm around the rail and pull her body up to a sitting position. 

So that got my wheels turning on how I could make something that she could use to do the same thing in the other areas of our house. I also wanted a walker for her. Then I saw my friend Kristin's blog and the walker they are using for their son (who is just like Tessa). It was easy to create the walker, spray paint it red (Tessa's choice) and put some flowery duck tape on it and now Tessa is "walking". She LOVES it! The low side allows Tessa to pull herself up independently and then she can use the other sides for movement.

Next up for mobility is her new wheelchair which arrives tomorrow. We can't wait!

Wednesday, November 27, 2013

Guide to Talking about Differences

I get asked a lot by parents of young children about how they should best respond to the questions that their children ask about my kids' disabilities. I always appreciate this question because 1) I know that it took courage to come ask me and 2) It allows me to share information that will hopefully make a bridge between that parent's child and mine.

Elias (age 9) is old enough now that he can answer these questions on his own. He generally chooses to just not reply to questions from strangers which is his right and I'm proud of him for setting that boundary. 

A quick story about Elias responding to questions independently: When he was about three years old, some people approached him and asked a question about his leg. I was too far away to intersect the question so I just watched from a distance. I was astounded that my young boy answered the question exactly as I had always done- word-for-word, including my personal hand gestures! My lesson that day was that he is watching me intently to learn how he should respond to others. I want my (and my kids') responses to be full of grace and honor and also with appropriate boundaries when necessary.

Here are a few tips on how to interact with my family (or others with differences)...

1.  Curiosity is normal and healthy! Please don't feel badly for being curious about my family. And please don't shush your child if they ask a question about our differences or make a harmless comment. This only teaches your child that the difference is something to be ashamed of and not talked about. Take advantage of the curiosity as an opportunity to educate your child.

2. Consider the context before asking questions. When someone is engaged in conversation or has their arms full of groceries, that is usually not the best time to ask questions.

3. My child is asking questions about your child. How should I answer their questions? I like this question because it means that the parent is willing to educate their child which helps bridge connection. And also this puts the onus on the parent talking with the child themselves rather than me needing to field all their questions.

For Elias our simple answer is that, "When he was born, his leg had a problem and he couldn't walk. So he had a surgery and the doctors fixed his leg so that he can wear this prosthetic leg now and run and walk like you and me." I sometimes add something like "and he is doing great now" or "it doesn't hurt him at all" because kids worry about these things.

For Tessa our simple answer is "She was just born without legs and part of her arm. And she is really healthy and happy and uses a cool wheelchair to get around."

4. Don't encourage your child's independence by having them come alone to ask us all their questions.  Please come with them! This way you are involved in helping them learn and can continue the conversation with them if they bring it up again in the future.

5. Don't ask: "What happened to her/him?" if I don't already know you or we aren't already engaged in conversation. And especially not when my children are around. I just cringe when I see strangers approaching me because they want to ask this question. While I understand curiosity, it's really just not their business. And it makes my kids feel isolated and strange.

6. Ask permission first before asking questions. "Do you mind if I ask about your son/daughter?" allows me (or my child) to make our own choice about whether or not we can respond to questions at that moment.

7. Keep in mind that you are not the first one to comment or ask questions. In fact, you may be the 20th person that day who has approached us with a comment or question.

8. Don't sensationalize my child's disability. As able-bodied people, it is hard to imagine living without arms or legs. But to my kids, it's just who they are. Sure they have obstacles to overcome and have to learn how to do things differently. But to them, it's really not amazing when they walk around on a prosthetic or hold a cup with one hand.

9. Set realistic expectations. By age 4, people were already talking to Elias about competing in the Paralympics. But in reality, no one goes up to an average soccer-player able-bodied kid and says, "Dude! You are totally going to make it to the Oympics!" It's just not realistic. And this kind of talk sets an expectation that people with disabilities have to do extraordinary feats to "overcome" their disability in a way. They don't. Just who they are, with their disability (not "in-spite of") is enough.

10. Take the initiative to build relationships with people who are different from you.  This really takes intentionality because without effort we easily end up surrounding ourselves with people who are just like us. So branch out and make friends with people who look, believe, speak and act different from you. Your life will be infinitely richer because of it!

Tuesday, November 26, 2013

The Questions, Comments and Stares

Before we adopted Elias, I spent a lot of time preparing myself for how to respond to curiosity and questions about our racial differences. Since it is obvious that Elias is not my biological child, I anticipated questions about "Is he really yours" and "Why doesn't he look like you?" and general international adoption questions from strangers who feel like it is appropriate to ask such things.

But I was totally unprepared for the amount of staring and questions that we would receive about his leg. In the 7+ years we've had with Elias, I've had ZERO questions about our racial difference and FOUR THOUSAND AND NINETY TWO questions about his disability.

The first few times I was asked a question by a stranger I was sort of caught off guard and stumbled through my response. (I can't count the number of time I have had people tap me on the shoulder to get my attention and then ask me "What happened to him?" Seriously!?!) As time has gone on, I've gotten lots of practice on perfecting my responses. I've also developed thicker skin and am able to set healthy boundaries and protect my kids better by the responses I give.

But even though we experienced years of stares and questions with Elias, I was taken back by the increase in the intensity of the stares and comments once Tessa became part of our family. At times this has been one of the most difficult aspects of life since adopting Tessa.

I have good days and bad days in how I handle my reactions and responses to people's stares, questions and comments towards Tessa. I've found incredible power in forgiveness- releasing the hurtful comments and not allowing bitterness to take root. And I continually thank God for the joy and honor it is to have Tessa as our own. This gives me strength to go to places where stares abound  like parks, schools, and restaurants.

Hearing about how much others comment and ask questions about our kids makes some people afraid to ask anything at all for fear of offending. Disability and racial differences can make people all awkward and overly fearful about doingsayingbeingasking the "right way". But education is key and I actually don't mind most questions- I see them as part of our role in our community as an adoptive family that includes kids with disabilities.

I'm going to do a little mini-series on the most common questions we are asked and how we respond and also a few tips on interacting with people with disabilities (hint= no different than anyone else). So stay tuned!

San Diego: Challenged Athletes Foundation

We were introduced to CAF (Challenged Athletes Foundation) a few years ago at the Endeavor Games and have been so impressed with this organization. In short, CAF provides grants, sports opportunities, etc to support the athletic endeavors of people with physical challenges. And they do it all with incredible excellence.

A couple years ago we were invited by CAF to attend their biggest weekend of the year- the San Diego Triathalon Challenge. It was an amazing event for Elias to be surrounded with amputees participating in sports with him for five days. So we were ecstatic when they offered to sponsor him again to attend this year.

CAF planned a full, long weekend with dinners, sport activities, and clinics all culminating with the Triathalon on Sunday. What is most significant about all of these events is the close relationships that are developed throughout as we all share stories, tips and ideas with one another. It's nice to be in a place with others who just "get" what it's like to have a child with a disability. CAF recognizes that this community is the most treasured part of the events and does a great job at facilitating these connections.

Seeing Elias run around with his posse of friends who all wear prosthetics is just priceless. They push each other to try new challenges and have fun while doing it.
It's especially touching to see the older athletes take intentional time to encourage and inspire the younger athletes around them. In this picture below Elias is running with one of his new friends Paul that he met a couple day prior. Paul is training to be on the Paralympic team and quickly became someone that Elias looks up to tremendously. During the Kids Fun Run, Elias kept tripping on cracks in the street and fell several times. Paul helped pick him up and then ran with him the rest of the race, even holding his hand a few times. It was so special for Elias!

One of the best events was surfing! Elias had a personal surf instructor to teach him the basics. He was nervous at first but then quickly got the hang of it and had a blast.


These new friends from South Africa fell in love with sweet Tessa
Elias was determined to complete his first 5 K. And he did it!

Quick family photo during the (beautiful) 5K

Doing exercises during the running clinic with Sara Reinertsen


Kids Stretch before their little fun run
 We can't wait to go back again in a couple of years!

Saturday, October 12, 2013

Photo Dump

I haven't been much of a blogger at all lately. Life is full and amazing and tiring and at the end of the day, I just don't have a lot of brain activity left to say anything interesting or useful. But my wonderful father-in-law has been asking for a blog post. So this is for you Bill!

HAIR- people ask me all the time how I am handling Tessa's hair. It's interesting to me the automatic negative connotation that black hair gets- lots of sighs and eye rolling and exasperation. But really it isn't all that bad and in some ways, Tessa's hair is much easier than Merin's hair. I'm fortunate to have  friends teach me about good, natural hair products. That and Tessa just has really great hair.

I bought Chase some coveralls for his birthday. He loves them and I'm not kidding. Here he is putting them to good use.

Elias and I had had a great date before school started- shoe shopping (for him), dinner and a movie. Taking out our kids for one-on-one time is so much fun!

Elias participated again this year in All Can Ski- an amazing event at Sea World San Antonio where people with disabilities get an opportunity to water ski around the lake. The first year we went, Elias was chosen to receive a custom ski and he loves it! It was made just for him and there isn't another one like it! He's getting braver and braver. One of these days we'll own a boat and then he'll become a pro.

Elias' fans at AllCanSki
Merin was playing with a battery-operated airplane and got the propeller stuck in her hair. Oops. We had to cut her hair to get it out but not before I made her pose for a picture.

Here is Elias on his first day of school. Merin was super excited to go along to see him off, but when he lined up with his class after the morning assembly to leave for the classroom, Merin had a total meltdown over him leaving. It was sad but actually pretty cute. :-)

Tessa is getting her first wheelchair! Here she is sitting in an electric wheelchair for the first time. She LOVED it! We still have this demo chair at our house while we wait on insurance for her own chair. Teaching a one-year-old how to drive isn't easy but she sure loves driving around outside. The chair is perfect for her size and when she is sitting in it, she's eye level with Merin.

Football Dude
Playing in the rare Austin rain!


Beach Bum
We took a quick family trip to attend the funeral of my uncle in Corpus Christie. Getting to go to the nearby beach was a little bonus and the kids loved getting to run and play on the beach!


Sister love