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Tuesday, July 29, 2014

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.

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Monday, July 28, 2014

His Turn For Camp

I've blogged here and here (about our family weekend) about camp Victory Junction.  We went to another Family Weekend back in April (how have I not blogged about that?!) and Kayla just went for the first time by herself this summer. 

Among many great things about VJ is the fact that they have a summer camp just for the siblings of someone with special needs. A time for the siblings to get to experience the fun of being away at camp, without your parents, for a few days.

Lucas is only 6, so I was a little hesitant about sending him for his first sleep-away camp this summer, but he's not the only 6 yr old there, so I was in good company! He was so excited at the opportunityy to go back to VJ by himself.

Sometimes it's hard having a sibling with a disability, and sometimes it's hard just being the younger sibling, period! We hear a lot of, "How come Kayla gets to do x,y,z? Why is x,y,z just for Kayla? Why is that only for kids who have a disability?"

We try to find the balance of teaching those life lessons: life isn't fair, everything isn't always equal, you won't always get to do the same things as Kayla just like she won't always get to do the same things as you, there are some things you'll be able to do that Kayla won't be able to do. Kayla is older, she wasn't doing those things at age 6.

We don't want either of our kids to have a sense of entitlement that they deserve everything and anything.

But some things are simply harder for a 6 yr old to understand, as much as we try to explain it.

Kayla didn't get to go to to a sleep-away camp at age 6. I don't know if I would have been ready/comfortable to send her to one at that age! Maybe it's because Lucas is my second child and I'm a little more relaxed with him, and it probably helps that we've been to VJ twice as a family and I really feel comfortable with their program and how things are run at the camp.

Whatever it is - Kayla had the opportunity to attend 4 camps this summer, so I went ahead and applied for the sibling camp for Lucas. To give him an opportunity that was just for him (although the irony isn't lost on me that the only reason he has this opportunity is because of having a sibling with a disability!)

So he's off at camp and he had no problem making friends as soon as we got there - he was almost too busy to even stop and tell me bye!

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Saturday, July 26, 2014

Life With A Superhero (Book Review)

When Kayla was born there weren't very many books on a parent's experience raising a child with Down syndrome. There were a few, but (if memory serves me right) they were older books.

In the eleven years since Kayla was born there have been a whole slew of new books/memoirs written on this subject. Most of the memoirs follow the same type of story line and revolve around the children still being very young in age. I'm always interested in the next book on this topic as I enjoy reading about another family's life experience.

The newest/latest book I've had the opportunity to read is unlike previous books (that I'm aware of) in a couple of ways: The book, Life With a Superhero Raising Michael Who Has Down Syndrome, is about the adoption of Michael as an infant from another country, and the story follows Michael into adulthood.

The title Life With a Superhero is not about Michael being a superhero, or having above-human qualities, or being angelic, but the title comes from Michael's love of all things superhero. 

Since the author, Kathryn Hulings, adopted Michael this memoir doesn't take on the same tone or storyline of other memoirs with receiving a surprise diagnosis, grappling with the meaning of the diagnosis, and finally coming to acceptance of the diagnosis.

While I don't know Kathryn Hulings, and have never met her, her writing has a feeling of raw emotions and sharing the good, the bad, the ugly. Reading her story felt authentic, as if she didn't hold back. She talks about her parenting style and sharing parenting moments that she regrets and admits there was  never a good excuse for some of those moments. Reading that made her seem like a real person with flaws and that she never tried to present her life, or the journey of raising Michael, in a false, too-positive light.

The book doesn't try to paint and overly positive picture of raising a child with Down syndrome. She shares the triumphs (being a member of their local community's swim team), to the challenges (Michael's running, finding a preschool that wouldn't balk at accepting him to their program, and independence). 

I especially enjoyed the last several chapters of Michael's transition out of high school into adulthood. She shares about the love of Michael's life - Casey - and their intense desire to get married. It was interesting to read and Michael and Casey's parents have, and are, navigating their relationship and helping them to be as independent as possible.

This one paragraph sticks out for me. After explaining about all the ways Michael is included and thriving in high school, Mrs Hulings eloquently states,

"Not once before the moment have I mentioned Michael's capabilities as measured by tests and percentages and standards used for old-school special education placements." She goes on to say that academically he is on a second-grade level, emotionally like a 10-12 yr old, and socially shares interests and obsessions of any typical young man. She continues, "If an archaic placement system, that did not encompass the ideas of inclusion had been implemented, and educational services were based on his 'stats," Michael would have spent junior high and high school imprisoned in a contained, exclusive classroom, combing his hair and pouring juice."

Just as when I read the book, Who's The Slow Learner, I want to shed a few tears over the thinking that things that happened 'back then' are still happening now. Mrs Hulings mentions "old-school special education placements" and "an archaic placement system" - yet that is still what we are dealing with here. Kayla's first placement was predetermined and solely based on how she measured up on tests and percentages. It might be old-school and archaic, but it is still happening and I can only question why. But I digress.

I appreciate the chance to get a peek into Michael's life as he is still growing and learning in to adulthood. This was a refreshing book to read.

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Friday, July 25, 2014

Scavenger Hunt

I haven't had a chance to post a recap on LuMind Foundation's Race for Research Road Rally we participated in last month.

It was a fun, busy 3 days of driving from one NASCAR-themed location to another throughout NC, TN, and VA. We had scavenger hunt items to locate and/or take pictures of along the way.

The scavenger hunt was a fun challenge! Each morning we would get our list and I would look at it thinking there was no way we would find everything on the list; yet somehow we managed to find everything. Only one picture eluded us and I think it was that picture that separated us from first and second place!

My favorite scavenger hunt picture was "a dog in a car." Thank goodness Lucas brought along Henry for the ride! (Side note: A guy at the hotel spotted Lucas and Henry and stopped to tell us that he had that stuffed dog as a kid and it was still in his possession. He asked if he could take a picture of Lucas and Henry because his daughters would get a kick out of it. My own Henry story is here with Kayla then receiving the below Henry that Lucas has now attached to.)

We had to get creative and imaginative for some our scavenger hunt items. One such item was "a receipt from an oil change." I had my oil changed a few days before the trip, but took the receipt out of the van. So we stopped at a quick-service oil change place and I got to explain what we were doing and why were were doing it. The lady working there has a nephew with autism; connections like that are neat. They were able to print us out a receipt from a customer who just left and paid cash (so no credit card information was on the receipt).

We got these cool magnetic decals for our cars. Wells Fargo was one of the sponsors, and we needed a picture of Wells Fargo - so there you go!

When we got a tour of NASCAR driver David Ragan's sponsor Front Row Motorsports I asked if they could spare a quart of oil ... all for the scavenger hunt.

Likewise at Richard Petty Motorsports where I was able to snag (I asked!) a spark plug, scissors, and soda can.

I found this nice police officer outside of a store in a shopping center and he obliged our request to stage this pull-over for a photo of "a routine traffic stop on the side of the road."

And our photo for "team member filling up tank of gas."
For a postage stamp we stopped at a random business, once again explaining what we were doing, and why, and the business we happened to be in was one that provided services to people with disabilities.

That was my favorite part of the scavenger hunt - the few times we were in the community looking for items we needed and being able to talk about LuMind Foundation. the Race for Research fundraiser, and Down syndrome cognition research.

Our team award for 2nd place in the scavenger hunt:

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Wednesday, July 23, 2014

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 Regardless, I only recommend products or services I use personally and believe will be good for my readers.

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Tuesday, July 22, 2014

Challenges Related to Disability

This week's Summer Blog Hop Series writing prompt is: Talking Raw, Talking Real: Challenges Related to Disability. 

While I can't write about the challenges of having Down syndrome, I can write about the challenges I've experienced as a parent raising a child who has Down syndrome. When Kayla is older and better able to understand a question like this, and articulate an answer, I am curious as to what she would say are her challenges related to having a disability.

Parenting any child, 46 chromosomes or not, presents challenges, but there are some specific challenges related to Kayla having Down syndrome and ADHD.  I'll address what I feel are the 3 biggest ones at this stage in our lives.

1. Having to go through the whole IEP/special education process. Let me preface this by saying two things. One, I'm aware that it wasn't that long ago that kids with disabilities weren't allowed in schools to receive an education, so I'm thankful times have changed. Two, every IEP meeting and experience and school is different and I'm well aware that there are plenty of families who have good, well-received, pleasant IEP meetings. This has been my experience.

Just about every single IEP meeting we've had can be summed up in a single word: Stressful.

It has been absolutely stressful trying to make changes in a system that is set in its ways. It is stressful to spend hours upon hours researching and reading the myriad of information and websites on inclusive best practices, modifying curriculum and accessing the general education curriculum in a general education classroom. It has been stressful to narrow the resources down in an attempt to present ideas, websites, solutions to the IEP team only to have it not taken, or to have bits and pieces taken out of politeness but to feel like nothing is ever done with the resources presented; nothing feels like it is being followed up on. It is stressful to feel like you are getting nowhere and that nothing is changing.

It has been challenging and stressful to try to plan ahead for Kayla's school years ... to envision now for what we want later for her in high school. It feels challenging because we don't have to do any of this with Lucas. Besides the standardized testing that all students go through we don't have to subject Lucas to as many evaluations and reports and scrutiny.

2. Academics. Kayla struggles with academics. She struggles with reading, math, spelling. I know repetition is so, so important for kids with Down syndrome, but it can be downright frustrating to repeat over and over and over and over the throught process of adding +1 to a number. I am constantly saying, reminding, hinting, and telling her, "You're just adding ONE more; it's 5 plus ONE more; it's just the NEXT number; 5....etc." Yet she still can not independently think to herself that 5+1=6. She has not memorized math facts (except 0s,). She needs prompting. The math resource teacher has been using Touch Math with her for the last 2 years. I've heard plenty of other kids with Down syndrome have been able to learn to do math with Touch Math, but I don't feel like Kayla is getting far with it - at least not independently.

The school seems to feel like she is getting the hang of it and making progress with it but I don't see it at home. (And the reverse is true where I see her successfully using a calculator at home and they say she doesn't use it well at school.)

Example for Touch Math: If she is presented with 5+3 these are the steps she should take: identify that 5 is the larger number and start her counting by saying "FIVE". Then either use a pencil to put her 'touch points' on the three, or use her finger to touch the places on the 3 where they should be and continue counting on from 5, "6, 7, 8." I don't see her doing this independently. Given a math problem at home she looks at the problem and just blurts out any random number without any thought process behind it. I have to remind her to use her touch points. I have to put my finger on the bigger number (if it's during one of my more patient times I will ask her which number is bigger), I have to remind her to start with 5 and I usually put my finger on the 3 and touch the three points. Sometimes she'll do that herself, other times, on a larger number (starting with 6) the touch points are doubled. If we're doing something on the computer and she can't visually see the points on the 6 she doesn't seem to know how to tap the 6 six times. I find Touch Math confusing and too many steps for her to remember. But what do we start over with now?

She is not like many kids with Down syndrome I know who do well with spelling or reading, either. So yes, Kayla struggles mightily with academics.

3. This challenge could be partly because of Down syndrome, but because she has been diagnosed with ADHD too I will attribute it to that. Impulsive behavior is challenging and frustrating for me. The definition of impulsive:
1. characterized by actions based on sudden desires, whims, or inclinations rather than careful thought
2. based on emotional impulses or whims; spontaneous
Those describe Kayla to a T. She is constantly doing things suddenly and spontaneously without any thought. She acts before thinking. She can't just walk calmly with us, if something catches her eye she is off and running towards it as we are yelling for her to stop and come back. She just can't. She can't focus on that object and our voices at the same time. Doing school work is difficult as she is easily distracted. It seems any time we sit down at the table to do any type of school work I lose her every five minutes. I'm constantly calling her name, redirecting her back to the paper, trying to get her attention as she stares off in space. I'll say something and ask her a question about it and she'll answer me with something that has nothing to do with what we were talking about. She's always changing the subject.

It's enough to make me want to pull my hair out.

So these are my struggles and challenges with Kayla right now.

Feel free to join the blog hop and share your challenges related to disability.

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Friday, July 18, 2014

He'll Buy Her A Gluten-Free Dessert

On Friday night of the annual NDSC convention there is a welcoming reception (light desserts/cash bar) and a dance.

There were several types of chocolatey gooey desserts.

There was one gluten-free dessert: chocolate covered-strawberries.

Unfortunately for Kayla when we arrived at the reception all of those strawberries were gone. The server told me they must not have ordered very many because they weren't bringing any more out.

These gluten-free desserts were right on the table with all the other desserts. If they had a separate table for gluten-free desserts and it was something like GF brownies, or cookies, I have a feeling they wouldn't have been all gone. But being placed on the table with the rest of the desserts, and being chocolate-covered strawberries (doesn't just about everyone like chocolate-covered strawberries?) they were all snatched up fairly quickly. I was frustrated for Kayla because the plates of brownies that kept coming out had strawberries on the brownies and around the plate ... couldn't they have put some of those strawberries in some chocolate and replaced the platter of "gluten-free" desserts? The next offering was a cup of fresh fruit. Kayla really wanted some chocolate-covered strawberries. Strike out number 1.

For lunch on Saturday we were at the food trucks. One of the food trucks was a cupcake-selling truck. The lines were long at all of the trucks with the amount of attendees at the conference. Kayla kept asking for a cupcake. Being that she didn't get dessert the night before Joe went to ask if they had GF - they did. They had GF cupcakes, but they were all sold out. Strike out number 2.

Saturday night at the banquet: Kayla had a GF meal ticket. We get to our table and like all tables the dessert is already out. It's a bit of cheesecake in a cup. The server took Kayla's away once I showed her the GF ticket. The substitute GF dessert? Fresh fruit in a cup. Strike out number 3.

I don't have anything against fresh fruit. I encourage my kids to eat fruit whenever possible. I just felt bad for Kayla that she couldn't have a dessert that most everyone else was eating - again. I thought with having a GF meal and with this population, (increased chance of having Celiac disease) that there would have been a different option/substitution for dessert.

Lucas overhead Joe and I talking about the lack of gluten-free desserts and feeling bad that Kayla didn't get to have anything. I know this seems trivial, complaining about dessert, but I did feel bad for her.

Lucas came over to whisper in my ear because he said he didn't want Kayla to hear.

This was my conversation with him:

"I know what I can do with the $5 I got from the tooth fairy. Tomorrow I'm going to buy Kayla a gluten-free cupcake from that truck. And I'll get $1 back since it cost $4."

Tears in my eyes. Tears over how sweet and thoughtful and unselfish he can be.

I told him how very nice that was of him.

He said, "Well first I was thinking I could get her a bracelet (from one of the vendors in the exhibit area), but then I thought she doesn't really wear bracelets. So then I thought about getting something for myself. But then she didn't get to have anything last night or tonight and I did, so next I thought about buying her a cupcake."

May he always be this concerned and caring and have such a big heart.

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Thursday, July 17, 2014

How You Live

July 12th was two years since my dad passed away. That date fell right in the middle of the NDSC convention so I had plenty to do to keep my mind occupied and distracted.

July 4th, Kayla's birthday (July 15th) and the annual convention (usually in the middle of July) will always be wrapped up in the anniversary of my dad's death and funeral. Two years ago I went to convention the weekend after my dad's funeral.

So today is 2 years to the day that my dad was buried and I see this video clip of Stuart Scott's speech at the ESPYs.

It was hard to watch, but I also realized that I needed this today of all days.

I am still angry that my dad in no longer here. I'm angry that he's not here to fight cancer anymore.

But Stuart Scott reminded me of something in his acceptance speech. He reminded me that even though he's no longer here, what mattered is how my dad lived his life while battling cancer. And he did just that - he lived his life. He continued to do the things he loved to do.

And when the third treatment was obviously no more effective my dad made the choice to not try a different chemo, to not put his body through that anymore - for a chemo drug that really didn't have much success rate for pancreatic cancer. He made the choice to live how he wanted to live.

Stuart Scott reminded me of this when he said, "When you die, it does not mean you lose to cancer. You beat cancer by how you live, why you live, and the manner in which you live."

My dad beat cancer in that way. He did not lose to cancer when he died, because it was on his terms - his terms to forgo chemo treatments and live whatever time he had left in the way he wanted to live. He was thankful for each and every day he had.

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Wednesday, July 16, 2014

His First Lost Tooth

We just got back from the National Down Syndrome Congress annual convention in Indianapolis.

The convention is about all things Down syndrome. Workshops, speakers, films, vendors, and families. Lots and lots of families roaming the hotels and the city ... families who have a loved one with Down syndrome.

In the midst of this all things Down syndrome weekend, Lucas managed to garner a little attention for himself.

He lost his first tooth!

It had been loose and wiggly for several weeks. The morning he lost it (on Friday) I wiggled it back and forth in an attempt to break the roots free from the gum. It seemed like it would just take a few wiggles to get it out as it was 'hanging by a thread.'

He said it hurt when I did that so I stopped and just let nature take it's course.

Later that morning Joe and I were talking with someone when Lucas excitedly got our attention by yelling that his tooth was out and that, "I pulled it out myself!" and there he was holding the tooth in his hand with a big grin on his face.

He was so proud and excited to have finally reached this milestone that he was telling every stranger he ran in to that he "pulled my tooth out!"

Then next several pictures that I took that afternoon had him pulling his bottom lip down trying to get that 'missing tooth' look in the picture.

If you're wondering, yes the Tooth Fairy found us. Before he went to bed Lucas said he "prayed to God to tell the Tooth Fairy that he was in a hotel in Indianapolis.'

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Tuesday, July 15, 2014

To My Eleven Year Old

Dear Kayla,

Today you turned 11 years old. Happy birthday my beautiful girl.

Your first couple of birthdays I would look back on your birth and had tears mixed in with the happy celebration. Those tears were not for you, but for me. You see, when you were born, and I realized you have Down syndrome, I cried. I didn't cry because you were born, and I didn't cry because I was sad about you. I cried because you had a diagnosis and I cried because I didn't know what that meant. I cried because of the unknown.

The future is still the unknown, but it is no longer a cause for tears...because I know YOU. I know who you are, I know what Down syndrome means to you and how it applies to your life. I get to watch you grow up and there is no greater gift.

So over your first few birthdays I cried because I regretted crying in those early days and feeling like I missed out on something while we were in the hospital and our first weeks at home.

But I no longer cry over the memories of your birth day. I learned that it was, and is, ok to cry over something you just don't know what to expect. I learned it was ok to cry about that aspect while still loving you and feeling overjoyed at becoming a mom.

I was never sad about you ... quite the opposite. I was thrilled you were a girl. I secretly wanted my first born child to be a daughter and there you were. You were what I wanted - my little girl.

You are my little girl who doesn't like to wear jewelery or have anything in your hair. You won't keep a ponytail or braid in your hair. But you love dresses. Oh how you love dresses!

You are growing up to be exactly who you were meant to be; who that is yet we don't know, but I'm enjoying watching you blossom into a beautiful young lady.

I know that I'm not the best parent. I know I have many flaws. I know I fail in many ways. I know I make many mistakes. But I'm the only mom you've got so you're going to have to stick with me through this journey! I'm learning as we go.

I love the way you embrace life. I love your giggles - they are infectious. I love your spunk, and, most of the time I love your energy!

Grab on to life with all you've got and swing with all your might. You've got your whole future in front of you and I know whatever you do you'll give it your all and you'll be successful. Your independence and determination will carry you far.

 Happy 11th birthday to my favorite daughter!


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