Her Face = Priceless

Last Friday, yes on Lucas' birthday, Kayla had a regional archery tournament in Columbia, SC.

Kayla's highest score was the 151 she got in Worlds last summer in Orlando. So far this season she hasn't been close to that score. Her best has been a 103.

I don't know what it was for this tournament, but she was on fire! She shot her best score yet - blowing away her 151. She came away from Regionals with a 165! She did so great with her shots; it was exciting to watch her.

After one particular round she was especially pleased with herself. She was excited to end that round with a 9 (she might have thought it was a 10; sometimes it's hard to tell until they go to the target to score their round) but we're all really excited for her when she gets that arrow in yellow!

Anyway, she was pumped coming back from the line and threw in a fist pump to herself. I'm so glad I caught this picture of her. Pure joy. Pure excitement. Elation. Self-confidence. Pride.

That's her coach behind her - just as happy for her as she was ... her excitement can get contagious!

Look at her face!

This was her "yes!" before the above picture, but of course someone waked right in front of me as I was taking the picture!

 Her coach is the best! He's so great with all the kids. 

Love You Forever

During my grandmother's funeral Mass one of my uncles read the children's book "Love You Forever" by Robert Munsch.

I don't think there was a dry eye in church as he read through the familiar images of a mother rocking her baby and singing

"I'll love you forever, 
I'll like you for always, 
as long as I'm living, 
my baby you'll be"

through her child's life. And of course as the story goes the one night she doesn't go to her son's house he goes to her house and returns the sentiment to her ... and then starts the tradition anew with his own newborn child.

After the service we gathered for a luncheon and that's where my own version of rocking my baby played out.

Lucas wasn't feeling well - lingering headache from a possible migraine the day before or sinus issues from flying and/or allergies from pollen in a different state affecting him - and I could see the energy drain out of him.

He tried to curl up on that cold, hard, metal chair and let his eyes and his head rest, but I knew he couldn't be comfortable like that.

I've told him before that he's too big to fit in my lap anymore even as he insists he isn't. I tell him there isn't any room for those legs and arms to go when I hold him.

But I also know that the time will come, too soon, when he won't want to sit in my lap, or be held in my arms, and so I relish those moments when they happen.

So I took him in my lap, even though he's all arms and legs now, and let his legs dangle off the sides of mine, and I tried to make him as comfortable as I could while he slept it off.

As I held him I thought of the book my uncle read. I looked down at this face, growing up when I'm not looking, and thought of the verse that parents everywhere have repeated to their kids, thanks to Robert Munsch, and how true the words are:

"I'll love you forever,
I'll like you for always,
as long as I'm living,
my baby you'll be"

She's Thirteen, Not Three

This past Christmas I was at a crossroads with Santa. I also felt myself in a conundrum with wanting Lucas to believe for another year, but wanting to tell Kayla the truth. Lucas was highly skeptical so I knew it wouldn't last much longer. I blogged about him coming to terms with it, and wanted to include what I was going through with Kayla, but that blog post was already long enough.

Kayla is thirteen and in the 7th grade and hasn't questioned the story of Santa. She took the story at face value - Santa brings gifts and that was that. I don't remember when I found out the truth, or how old I was. I'm sure I didn't still believe when I was thirteen and I doubt Kayla's classmates still believe.

So one day, several weeks before Christmas, Kayla was talking about Santa and I just casually said, "Kayla, Santa's not real, ok?"

Kayla, "Santa is real."

Me, "Well you know all the Santas that you see at parties or parades? Those aren't real Santas, they are just people dressed up in costumes."
She replied back, "He's real at Christmas you know." I had to laugh at that.

The next time we talked about it she said, "Santa's fake" and I confirmed, yes, Santa is fake. He's not real. I wasn't sure if she really understood what I was saying or if she was only referring to the Santa at the Christmas parties.

Then there was the time Lucas was asking about Santa, again, and Kayla yelled out, "Santa's fake! Right mom?" oops!

Up until Christmas she seemed to just accept the "Santa's fake" line, but on Christmas Eve and Christmas Day she was back to insisting that Santa was real.

There is a certain kind of magical element to Christmas when you have young kids who believe in Santa, and it's fun to see their surprise and wonderment at receiving gifts they asked Santa for, but as kids grow up that belief eventually fades away and I'm not interested in keeping Kayla in a 'younger' mindset.

I'm not going to continue that ruse with Kayla just because she has Down syndrome.

I want Kayla to be taken seriously by her peers, potential employers, and by her community. If she is 25 years old and still believes in Santa, will they take her seriously? Will they presume her competent? Or will they think she is less capable? Will they continue to treat her younger than she is? I am not going to play along, or encourage my adult child, to believe in Santa.

I'm not saying there is a right or wrong way on how to handle this, only this is how I feel and plan to parent my child.

People already have a tendency to treat her younger than she is.

How many parents have a typical 13 year old daughter who, when leaving a medical office, are offered a sticker?

How many parents have a typical 13 year old daughter who, when left in the exam room the nurse, or assistant, asks, "Would she like to watch Peppa Pig?"

No, she is not going to watch Peppa Pig - she's thirteen, not three. I realize she might not look like she's thirteen, but she's obviously not a toddler.

Yes plenty of older children/younger teens watch cartoons, but there is a difference between cartoons and preschool programming.

Yes I had a sticker book, two actually, when I was a kid. I still had those books when I was thirteen. I don't think I was still collecting/trading stickers at that age though - or if I was it was not on a regular basis and it wasn't with stickers from doctor's offices (which are, usually, more of the preschool character variety.)

Kayla is going to believe what she believes and I can't change it, or force her to not believe in Santa, but I won't encourage it and I won't continue to tell her Santa is real.

9th Annual 31 for 21 Blogging for Down Syndrome

The 9th Annual blog challenge called "31 for 21" is almost upon us! I feel like most everyone knows what "31 for 21" is all about, but in case there are some new bloggers joining in here is a quick recap:

- Down syndrome is 3 copies of the 21st chromosome (in medical terms it is Trisomy 21, frequently shortened to T21).
- October is National Down Syndrome Awareness Month
- There are 31 days in Oct
- Blog every day (31) in Oct to raise awareness/acceptance about Down syndrome (T21)
- So ... 31 for 21 Blog Challenge

A couple of guidelines:
- You don't have to blog about Down syndrome every day; just blog every day about whatever you want
- You should mention, at least once, that you are participating in "31 for 21"
- You don't have to be a parent, or grandparent, of someone with Down syndrome to participate
- Grab the button and post somewhere on your blog or in a blog post
- Sign Mr Linky so other bloggers can see all the participants
- Meet new bloggers
- Use #31for21 on social media

I will be sharing blogs from participating bloggers on the Big Blueberry Eyes Facebook page.

Here is a link to topic ideas to get you thinking about what to blog about. If you have any other topics please let me know so I can add them to the list.

Grab This Button

<a href="http://mdbeau.blogspot.com/2015/09/9th-annual-31-for-21-blogging-for-down.html"><img src="http://i185.photobucket.com/albums/x198/wish4rk/TTR31for21-5.png" /></a> <a href="http://mdbeau.blogspot.com/2015/09/9th-annual-31-for-21-blogging-for-down.html">Grab This Button</a>

Please add your blog to the list of participating bloggers:

Journey to Riding A Bike

Riding a bike has been something I've wished for Kayla to be able to do since she was born. It is one clear memory I have from those early days after her birth - asking Joe if he thought she would be able to ride a bike.

I've been chronicling this journey for the past few years. She was almost 10 before she even started riding a bike with training wheels. She just had no interest or motivation.

The next step was to take an I Can Shine bike camp and then she won a Strider Balance Bike.

It was such a blessing when she won the Strider bike. She really liked this bike - she didn't have to worry about pedaling and she felt more comfortable on it. The best thing was she could once again be independent and ride her bike around with Lucas and the other kids.

She still enjoyed our bike rides using the tandem bike, too.

We put her other bike up and let her focus on the Strider bike. It's been about a year since she's been using that one. On Monday we went for a ride on the tandem and I asked her if she wanted to practice on her other bike when we got home and surprisingly she said yes.

True to her word, when we got home she got on the old bike from bike camp and I held on to the handle. We started going and it felt like she was pretty well balanced so I let go of the handle to see what would happen. She stayed balanced and she pedaled for longer than she had in the past. I was shocked! She probably went the length of about 3 houses by herself without me holding on.

She agreed she would show Joe when he got home from work. So after dinner we went out to show him what she was able to do.

I let go of the handle expecting her to go a few houses down again, but she didn't. Instead she didn't stop, she just kept going. She kept pedaling and pedaling. My slow jog turned into a run. She saw a group of kids down the street and rode her bike towards them yelling, "Guys! I'm riding my bike!"

Most of the kids have seen her 2 years ago trying to practice with this very bike and not get very far, they've seen us ride around on the tandem, they've seen her on the Strider. I think it didn't register at first, what she was doing, but then one girl started clapping as she got closer and then a few other kids started joining in.

I was chasing after her, stunned that she was actually doing this, she was riding her bike totally independently! I had to hold back my tears.

When she stopped to turn around she said "I want to go again!" She rode back through the group of kids "Watch out guys!" and someone's dad was out bouncing a ball. The ball bounced up and hit Kayla and she rode through and he yelled out "Oops, sorry!" Without missing a beat Kayla kept pedaling, it didn't even throw her off stride, and she yelled back, "That's ok!"

When we went out to show Joe I was not expecting her to ride down the street stopping only to turn around. She hadn't been on this bike in a year. How was she doing this?!

But she was, she was doing it.

Words can't convey how excited and proud I am of her reaching this new milestone.

If the video doesn't work try clicking this link - it should go directly to the youtube video.

She Wants Me To Back Off

I have a tendency to stick close by Kayla when we're out and about. She's not exactly a wanderer, but more like she doesn't always pay attention to her surroundings ... or to where I am.

She wants more independence though. She doesn't always want me right there following her.

This summer we were in a restaurant restroom. I was waiting for her at the sink while she was still in the bathroom stall. All of a sudden she yelled out to me,
"Go wait outside!"
Me, "Outside where?"
K, "Out the door!"
Me, opening the door, but calling out to her, "Don't forget to wash your hands."
K, "Oka-ay" (said with an attitude)
As the door closed behind me I heard, "I know that!"

At the hair salon I left her while she was getting her hair washed to go check on Lucas in the waiting area. A few minutes later I went back to check on her getting her hair cut and she shooed me away with her hand telling me to go be with Lucas.

Our local water park had a "Special Needs Swim Night" where it was opened after normal closing time only for families with special needs. After we put our stuff down in chairs I told Kayla I wanted her to try going to the bathroom before we went to any of the water activities. As I was getting ready to go with her she took off running to the bathroom calling behind her, "I know where it is! I got it mom!" It wasn't crowded, she did know where the bathroom was and we weren't that far from it so I let her go. (Ok, I asked Joe to go follow her and just wait in the general vicinity of the bathroom area).

Sometimes I drop her off at the front door of her vision therapy appointment or ballet class and then I go park. It may not be a big deal for most 11 year olds to do this, but for me...and for her...it is. It means I can trust her to do exactly what she is supposed to do and go exactly where she needs to go. She goes right to the vision therapy room with her folder, or right to her ballet room without distraction.

We were in the waiting room for a doctor appointment and when her name was called I walked down the hallway behind her. She told me, "You go wait back there for me." That one I couldn't oblige her with though and told her I had to go to doctor appointments with her.

It can be bittersweet to realize you're not needed as much anymore.

But independence and confidence are beautiful things.

 

Golden Moments

This Summer Series Blog Hop writing prompt is Golden Moments.

At this time my "Golden Moments" have a focus on successful community inclusion. I have heard the stories from other families who tried to sign their child with a disability up for a class (gymnastics, music, dance, etc) or even preschool - and have been met with a deer-in-the-headlight look. They have been given a myriad of excuses of why they can't accept their child in this class or that preschool. They have been turned down or made to feel like there is no way it could work.

I'm thankful that, knock on wood, to date this has not been our experience.

Kayla hasn't done a lot of extra activities but the few things we have done there haven't been any issues with me signing Kayla up for a typical class.

A few years ago Kayla took a ballet class at the YMCA with her best friend (who also has Down syndrome). It was a small class, I think only about 5 girls. But there was never any hesitation of Kayla and her friend having Down syndrome and being in this class.

Last year I brought Kayla on base to participate in the Missoula Children's Theater. We just showed up for auditions like everyone else. I didn't call ahead of time and ask if there would be any issues with Kayla having Down syndrome. The only thing I did ask them to do after watching the first rehearsal was to slow down one of her sentences because her speech isn't as fast as the other kids. They had no problem with that.

I again brought her on base last week for another Missoula Children's Theater production, and again, we just showed up with the intention of participating.

She took a drama camp this summer with Creative Spark for the Arts and again, I had no problem signing her up for this camp. There wasn't any hesitation on their part with having Kayla participate in the 2-week camp.

I think it's important for Kayla to participate in a wide range of activities that involved her peers with and without disabilities. It's important for her to attend the summer camps that are just for people with disabilities so she is amongst peers that are alike her in that way - and it is just as important for her to be accepted, included, and involved in events and camps and classes that aren't disability-specific and to be with her peers who don't have disabilities.

My Golden Moments have been watching her participate, flourish, and make friends in both of these types of environments ... and to have something that I don't have to advocate for her to be included in.

She's just there - involved like anyone else. And that, to me, is a Golden Moment.

 

The Bike Chronicles Continued

I haven't done an update on Kayla's bike riding since this post in Feb 2013. After that post Kayla started riding her bike with training wheels fairly regularly. I thought I blogged about it, but can't find the post. She was finally independent on a bike; however, a bike with training wheels doesn't go very fast.

Last summer Kayla attended an I Can Shine (formerly Lose the Training Wheels) bike camp. While I wasn't expecting miracles, I was hoping for progress. She didn't get very far with it. They have a handle you can buy (which we did) that would attach to the back of the bike so the adult can help give support on a bike with no training wheels (and not hurt your back bending over to hold on to the seat). As you know when riding a bike: you have to have some speed to keep the bike balanced, upright, and going. She just wouldn't do it.

We brought it home and practiced whenever we could convince her to get on the bike. Her balance is just not there. She continued to enjoy riding the tandem-bike with me though, so at least there was that!

She would ask for her old bike - the one with training wheels - but they discourage you from going back to the training wheels after you've been to this camp. She really wanted to ride her training wheel bike down the street when other kids were riding their bikes, but I didn't want to take that step back. I finally sold it at a yard sale and then felt guilty. Extra guilty because it was her means of being independent on a bike and I took that away from her. But I wanted her to keep trying on her new bike with me holding the handle. She wanted me to take her new bike back to the store.

A few months ago I heard about a contest online called The Great Bike Giveaway. I had been eying the Strider bikes for a few years and saw they were one of the sponsors giving away bikes in this contest. But then I wondered if she was now too big for one of those balance bikes. She wasn't - they now make larger Strider bikes!

So I entered Kayla; and she won a Strider bike!

I should have taken video to show how she was when she first started using the Strider - just as with the bike with training wheels it was slow going. She basically was just walking with the bike between her legs. She wouldn't even really sit on the seat at first. I thought to myself that she will never get anywhere going like that! But she kept getting on it, kept wanting to ride it...was excited for this bike. She would ask if she could ride "my Strider." She started to get a little faster on the bike.

This is a very short clip of how she was on it in June:



And now look at her: She is getting enough speed and lifting both legs off the ground and coasting. Coasting! She is balancing on a 2-wheeled bike!


I might be just a little bit excited to see this progression in her. And I am feeling more confident that she will transition from her Strider bike to a pedal bike with 2 wheels.

Story From Our Neighborhood

Earlier this summer we were walking back home from the end of our block. Kids were outside playing and Kayla stopped to play with a few girls who were jumping rope with a large rope. Each girl was on the other side of the street, the rope being long enough, and one taking turns jumping.

I stayed on the sidewalk watching, and waiting, for Kayla. She took her turn holding the rope, but she's not as coordinated as the other girls. She tried to swing her arm in time with the girl on the other end. They were patient with her and attempted a few jumps when they could.

I was standing by a vacant house when 3 cars pulled in to the driveway. I remember thinking to myself, "Wow someone is actually coming by to look at that house." The for sale sign had been in the yard for months.

A few days later there was a moving truck in that driveway.

On one of our walks we met 2 of the 3 girls from the family. A week or so later I met their mom.

The mom told me that the day they were looking at the house she saw the girls playing outside. She said she watched them play for about 30 minutes. (She and the realtor were outside for several minutes waiting for her husband to arrive). She continued to tell me that she watched the girls with Kayla; she watched how they treated her, how they were with her, how they included her, how all the kids on the street were just out playing.

She said, "After watching them with your daughter I said, yep, this is the house, the street where I want to live." She doesn't have a child with a disability, though her youngest is entering Kindergarten with an IEP for speech.

I wouldn't say that Kayla has any "BFFs" on our street, but there are a lot of elementary-aged kids on our street. For the most they are friendly and accepting and including. That's the type of community I want for Kayla. For both of my kids. To be able to go outside and play. To have kids come knock on the door and ask, "Can Kayla and Lucas come out and play?" (Although sometimes that knock on the door becomes a little irritating when it always happens 5 minutes after we get home from somewhere).

This is why making 'the decision' is so, so hard. These are the formative years; these are the years friendships are made and acceptance is borne. If we move in the later years she will have to start over in more ways than one - she would have to start over with her name on the state's waiver list. That would put her even further back for benefits when she becomes an adult.

Still don't know what to do, but for now I will smile at the story from an outsider, from a new family to the neighborhood, who watched from a distance and saw that my girl was indeed, included.

Yoga Spinner Game Review

I'm always on the lookout for board games that both of my kids can understand and play ... and play by themselves with minimal parental involvements for those times I'm busy making dinner (or honestly, just don't feel like playing a children's board game!)

Yoga Spinner (ages 6+) by Upside Down Games is one of those games that fits those criteria. It's a fun, challenging, and active game, too.

The instructions are basic and easy to understand. You spin the spinner and draw the corresponding card and attempt the yoga pose for 10 seconds. There are some challenges on the spinner - you could land on the icon where someone gets to take one of your cards (but they have to perform that move for 10 seconds in order to keep it!), or someone else decides your category for you. One of the categories requires the move to be done with a partner. You can watch a short video clip of the game to get an idea of what poses are on some of the cards (54 poses in all).

I initially thought the game would go by fairly quickly (and it can), because the first person to collect 4 of the different colored cards wins, but it's not always as easy as it looks! Some of the yoga moves can be a little difficult to stretch and bend your body in that position if you've never done them before (I just might be speaking from experience here!) And to hold it for 10 seconds!

The first time Lucas and I played we modified it to say if you were able to attempt and hold the position for at least 5 seconds you could keep the card, but we would still try to hold for the full 10 seconds. The more we play the easier it will be to do the moves and when we are more comfortable (limber!) with the moves we will go with the full 10 seconds. This works well for Kayla too as it is harder for her to hold a position for 10 seconds.

Among some of the many benefits to yoga are better posture, enhances coordination and balance, increases physical strength and concentration, and develops greater flexibility (great for Kayla who has hypotonia, or, low muscle tone).

Yoga Spinner has won several awards including being rated for children with special needs by Able Play.

I frequently hear my kids asking each other if they want to play "the yoga game" and the answer is usually a resounding "oh yeah!"

I asked Lucas what he likes about the game and he said, "Because it's doing exercise and it's fun!"

Disclaimer: I received one or more of the products mentioned above for free using Tomoson.com. Regardless, I only recommend products or services I use personally and believe will be good for my readers.