Letter To My Daughter

Monday, 23 December 2013

Dear Kayla,

I will be the first to admit I'm not a great mom. I know I have many faults and have made many mistakes in raising you. The incident over the necklace is just one example of those parenting mistakes.

When I picked you up from school the other week and your aide told you to show me what your friend/classmate gave you I was expecting it to be another one of those rubber band bracelets you've been coming home with.

I wasn't expecting to see the dainty, silver necklace with the "K" around your neck.

I admit to having almost two simultaneous thoughts. The first being absolutely touched that your friend gave you a gift like that. I had to hold back the tears.

Immediately following that thought was a feeling of dread in the pit of my stomach as I thought to myself that this gift was going to end up broken in no time.

I was surprised to even see you wearing that necklace. You don't like to wear anything on your arms, around your neck, or in your hair. So while I was touched by the gift she gave you I also felt like it was kind of wasted on you as it would end up sitting on your dresser, or more likely, broken.

On the way to therapy I kept pointing out your necklace and how nice it was of "I" to give it to you and how important it was to take care of it. I kept mentioning that you had to be careful with your necklace so it didn't break.

You were great about keeping it on the rest of the day. That night after I finished making dinner I went upstairs to get you and noticed all the lights were off. I found you in bed with your pajamas on. You said you were tired so I cuddled up beside you and started rubbing your back.

I don't know what made me think about your necklace, must have been intuition, but I reached up to your neck and asked you where you necklace was. You said, "It broke."

I admit I reacted a bit too strongly to the news of what I figured would happen had happened so soon after receiving the gift - that it didn't even last a full day.

I jumped out of your bed and said, (ok more like yelled), "What?! Kayla where is your necklace?!"

You told me it was on your dresser and there I found it split in the middle - no way for me to fix it.

I was so upset and didn't control my feelings well at all. I yelled at you about not being responsible and taking care of your things and look at what happens you end up breaking your stuff. Then I continued in my childish ways and stomped down the stairs so frustrated.

You came down for dinner and sat at the table where I was still fuming over the broken necklace and I didn't let it go. I continued to be upset about it and harp on you about breaking a necklace that someone gave you and how this was such a special gift.

Of course it was no surprise when you left the table and I heard you in the bathroom crying.

I sat at the table and cried too.

Cried because I was ashamed at the way I just reacted and cried at the way that I treated you and cried that I yelled at you and mostly cried because my actions caused you to cry.

I heard you in the bathroom crying and saying, "It broke itself. I didn't do it, it broke itself."

And there I went again, "Kayla it didn't just break by itself! You had to have done something to cause it to break the way it broke. You did something, you weren't careful!"

More tears. From both of us.

I finally went to you and in a more calm voice asked you if you were trying to take your shirt off when you changed to your pajamas; and when you pulled your shirt over your head did the necklace get caught and break? You said yes, but it's hard to know if that's what really happened.

I pulled you in to a hug and apologized to you. I told you I was sorry for yelling at you about the necklace. I told you I still loved you. I know it didn't make everything better, but I wanted you to know I was sorry and that I still loved you despite my less-than-desirable behavior. 

I don't even know why I was so upset over the necklace. I tried to find the words to explain it to you, but I don't think we got very far.

I think it was because this necklace meant more to me than it did to you. I think I've always put a lot of importance on material things ... attached memories to them and they became my memories. Material things became important to me. I had scrapbooks filled with things from my growing up years. Things that I kept because this person or that person gave it to me, or tickets to this movie or that movie because I went with so-and-so.

I was so touched that this girl gave you a present, I think maybe for Christmas. I don't know how many other girls she might have given a gift to as well, or if you were the only one, but either way, you were one that she did chose to give a gift to. You were included. She thought of you and wanted to give you something and I wanted that to mean something to you.

And you were happy about it- I could see it in your face when you showed it to me. But I wanted you to be like me. I wanted you to be responsible like I was when I was your age. I wanted you to take care of your things. I wanted you to just know how you were supposed to take care of the necklace. I wanted you to take pride in it.

I think my anger was anger at myself that I unfairly directed at you. Anger because of my own image of you doesn't always reflect the person who you are. Anger at myself because sometimes I blame your having Down syndrome on things that frustrate me. I had the fleeting thought that if you didn't have Ds you might have cared more about the necklace, might have been more careful when changing your clothes, might have just known how to be gentle with it. I know that's not fair and that is one of my faults. I never said I was perfect. I know I'm far from it.

I know there was no reason to be so upset over a $5 necklace from Claire's. The "K" charm on it was still intact; all I had to do was replace the chain. I did apologize to you, but I'm saying it again that I'm sorry I went overboard. I was just hoping the gift of this necklace would last longer than an afternoon.

I did go to Claire's and get a new chain. But by then I had traumatized you about the necklace because you refused to wear it. I convinced you it would be ok to wear it to school and that your friend would be happy to see you wearing the gift she gave you. You finally relented and I've been able to get you to wear it a few times now.

It looks so pretty on you.

I'm not the best mom, but I am trying to be better. Thank you for forgiving me for my faults.

Love, your Mom.

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You What? uKloo!

Friday, 6 December 2013

uKloo (pronounced You-Clue) is a fun, engaging, early reader treasure hunt game for kids ages 4+. It was created by Doreen Dotto who has 2 boys that were reluctant readers and tried to avoid doing reading homework. She wanted to create a fun way to get them engaged in reading with a bonus of being active while doing it!

So what exactly is uKloo and how do you play it? The game comes with 4 sets of cards (3 reading levels and a set of blank dry-erase cards). You set the cards up in various locations throughout the house according to what is on the card. Once they find one card it will tell them where to find the next card and so on. The last hiding spot reveals their surprise.

The surprise can be anything you want it to be. A dollar store toy, a certificate to get ice cream, a sticker, a card from mom or dad, a lollipop, etc. It doesn't have to be complicated at all!

Examples of each level of the reading cards from early readers to more detailed readers:
1) Look beside the milk
2) Find it in your helmet
3) Search on the bed under your dad's pillow

For early readers there is also a poster of all the words that are used on the card. If a child gets stuck on a word they can refer to the poster that has a picture with each word to help them figure it out. The poster is also sorted by verbs, preposition, helper words, and nouns. The words in each category are also listed alphabetically.

My kids love this game and frequently ask to play it. Sometimes I use it as an incentive when Kayla is a bit slow getting ready for school. I'll ask her if she wants to play uKloo when she gets home and that usually perks her up! She even tried telling her aide as school about a game she was going to play at home, but he had no idea what she was talking about.

They both enjoy running around to the next spot and seeing where that card is going to take them ... and wondering when they are going to find their surprise!

Here are 2 quick videos of each of them playing the game.

Make a video - it's fun, easy and free!
www.onetruemedia.com

A short clip of Kayla. I had a couple more video clips of her reading her cards and finding her surprise, but they've mysteriously disappeared from my phone ... coincidentally after Kayla was looking through the videos!

Make a video - it's fun, easy and free!
www.onetruemedia.com

uKloo has won 9 awards (3 from Dr Toy categories), is available in Canada, US, and International, and available as a free app.

uKloo2 - Riddle Edition Treasure Hunt Game for ages 7+ was recently released and that is on my to-get list for Lucas's birthday. While Lucas does have fun with the Early Reader game, the Riddle Edition will be more challenging for him and I'm sure he would enjoy figuring out the riddles to find the next clue.

Disclaimer: I received a uKloo game for free to review, but all opinions on the game are mine and my children's!

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We Sing 80s Review and Giveaway

Wednesday, 4 December 2013

A Wii video game featuring 80s music? Growing up in the 80's I say: Yes, please!

I received a bundled pack of the Nordic Games We Sing 80's (to include 2 microphones) for review. 

Since my husband is also a child of the 80's I figured this would be a fun game for us to have for the Wii. If you were a child of the 80's you know you loved the music from that decade! This game has 30 songs including 21 that were worldwide number 1 hits. There is a good variety of mixed genre including songs by Cyndi Lauper, Paula Abdul, Smokey Robinson, Cameo, Queen, Tears For Fears, Lionel Ritchie.

There are a couple of big names not on the list - Whitney Houston and Michael Jackson - but maybe there are copyright issues and they couldn't use their songs.

I thought I knew a good amount of 80's songs, but there were several songs I didn't know.

I figured this would be a game that only Joe and I would enjoy ... not our kids. Of course we couldn't try it out after they went to bed because they probably would have woken up from our singing!

Even though my kids know nothing of 80's music they were very anxious and excited for us to break out the game ... and they wanted to play it too ... even though we kept telling them these are EIGHTIES songs and you DON'T KNOW THESE SONGS!

That didn't matter to them. They wanted the microphones and they wanted to sing. They had a blast. Since they lyrics scroll through on the bottom of the screen this is also a great way to increase reading skills and reading fluency. It's so funny to hear Lucas trying to keep up with the lyrics of the song as he's reading the words scrolling through the screen.

Kayla's favorite song seems to be "Boys (Summertime Love)" by Sabrina (one of those songs that I didn't know). It's not easy for her to keep up with the flow of singing the lyrics, so this one she can easily sing "Boys, boys, boys" over and over!

They've asked to play this several times and Lucas has told me that his favorite songs are "True Colors" and "Smooth Operator"! Another day we were driving and he hears on the radio station "the best hits on" whatever radio station it was and he says, "No, that's not right! The best hits aren't on that station. The best hits We Sing 80's!" I guess he's turning in to an 80's music fan?

You can play up with up to 4 microphones and there are several ways to play - solo, party, karaoke, 8 multiplayer modes, original artist with video plays on the screen. There are singing lessons, replay features, and 3 difficulty levels.

I already know that I have no musical talent and should only be singing when I'm driving (ha!) and this confirms that, but it also made me realize how many of the lyrics I actually don't know! I find it much harder to sing along as I'm trying to read the lyrics.

All in all my family has been having fun with this game and enjoying 'singing' together ... but I won't embarrass my kids (or myself!) with a video showing our non-singing skills. You can watch a trailer for the We Sing 80's game here.

Giveaway! You can win your own copy of We Sing 80's by leaving a comment stating what your favorite 80s song/musician/group is. Please make sure I have a way to contact you if you're the winner. Winner will be chosen by random.org

 

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Pancreatic Cancer: Know It, Fight It, End It

Wednesday, 13 November 2013

November is Pancreatic Cancer Awareness Month. One of the main awareness events that happens in November throughout the country are PurpleStride walks/5Ks to raise funds for the Pancreatic Action Network. 

Last year we went to Savannah for the PurpleStride walk.

That was 4 months after my dad passed away. He had been attending the walks in Orlando and we didn't get a chance to go with him, so I wanted to honor his memory at the Savannah walk.

It was hard. Harder than I thought it would be. While I'm glad we went in his memory there is a small part of me that thinks it was too soon.

At the last one my dad attended in Orlando he told me spoke in front of the crowd as one of the survivors.

It was hard last year knowing he was no longer a survivor. Knowing he wouldn't be going to any more PurpleStride walks and speaking to the crowd.

I've been flip-flopping over whether I wanted to make the trip to Savannah this year to do the walk again (Savannah is the closest one to us). A part of me wanted to go to continue honoring his memory.

But a part of me didn't. I admit to being somewhat bitter. I didn't want to go to an event that would be a constant reminder that my dad is no longer here. I didn't want to go to an event and raise funds for treatment and a cure that is too late for my dad. Yes, just a little bit bitter.

I am absolutely not saying that it isn't important to keep raising funds for pancreatic cancer research, treatment, and cures for the people who are currently fighting this disease, and for the people who are yet to be diagnosed. It is important. The 5 year survival rate for this type of cancer is just 6%. (My dad fought it for 3 years). It's the only major cancer with a 5 year survival rate in the single digits and has remained that way for 40 years.

There are no early detection methods and the symptoms that do appear could be attributed to other medical conditions (my dad was first diagnosed with pancreatitis). More than half of the diagnoses are made in the latter stages. Surgery offers the best chance, but only about 15% of cases are caught early enough for this surgery...and even with surgery this cancer recurs in approximately 80% of patients.

So yes, more research is desperately needed. Only about 2% of the National Cancer Institute's budget is allocated to pancreatic cancer, the 4th leading cause of cancer deaths.

I'm not denying that there isn't a need in the pancreatic cancer community for events like PurpleStride to raise funds and awareness ... there is ... I'm just saying that I'm also bitter and still mourning for my dad and that I know my participating won't help my father. Sometimes that is still hard for me to come to grips with.

I didn't know if I could put my emotions aside and do the walk this year. But the decision ended up being made for me. The Partners in Policymaking class that I'm involved in meets the 3rd weekend of every month and the walk in Savannah is on the same weekend I need to be in Columbia for class.

I won't be at the walk this year, but I can still donate, raise awareness, and always, always honor and remember my dad.

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Sticky Love Notes

Thursday, 7 November 2013

Unbeknownst to me Lucas found the "sticky notes" on the computer. He proceeded to type up 2 notes and was excited to show them to me.

I know he's just starting to learn typing at school; he's told me about learning some of the home keys starting with F and J.

So I know he's not adept at typing away on the computer; he doesn't know where all the keys are yet. I wonder how long it took him to type these 2 notes using the 'hunt and peck' method.

I'm glad that he's so secure in the knowledge that he is loved!

 

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The World Series, The Red Sox, and My Dad

Tuesday, 5 November 2013

Sports has a way of connecting people. A common bond among strangers. A love for a team passed down through generations. Celebrating a win over the water cooler with co-workers.

My dad loved sports. He was a fan of the 4 major sports teams in the Boston area: Red Sox, Celtics, Patriots, and Bruins. He followed them all and rooted for them all, but he was extra passionate about the Red Sox.

He played baseball from early on and continued playing softball in the military on base teams. I wanted to be like him and attempted to play softball in school. I touched on his love of sports on the eulogy I wrote.

As I mentioned, he was a huge Red Sox fan. His father was a huge Red Sox fan. And I'm sure his father's father was a Red Sox fan as well. I am my father's daughter; therefore, I too, am a Red Sox fan.

Sports was my connection with my dad. That thing we had. I couldn't, and didn't, play softball well at all, but I could sure talk about the Red Sox (or Celtics, or Bruins, or Patriots) with my dad.

When my dad joined FB our conversations became even more centered around sports. He was a coach from home - critiquing the game and coaches' decisions from the first play. He let his opinions be known of trades that happened during the season and during the off-season.

A glimpse into some of our FB conversations:

Feb 2011: Me to my Dad: I know you've wanted the Celtics to trade Perkins, so you're probably happy about that ... but Nate Robinson too? He was productive coming off the bench for Rondo; they shouldn't have traded him. And w/Shaq's injuries they really need another big man with KG.

Dad: What, he was traded? Let me check this out. I didn't hear this till you posted it. I wanted a big man in the middle. I didn't want Robinson traded but now that West is back, he is just as good.

Aug 2011: Dad: I thought we had a chance to come back but not now after Napoli hit that home run. CJ Wilson owns the Red Sox. (I have to laugh at finding this one because Napoli was on the Red Sox this year and helped them win the WS.)

Apr 2012: Dad: Bowden is a young starting pitcher that started with the sox last year. He only pitched 3 inning this year and gave up 2 hits and one run and was sent down to aaa. Marlon Byrd is an outfielder with 3 singles in 43 at bats this year. The point I was making is that we don't need any more outfielders, we need any kind of pitching. I know we have 2 starters on the dl from the outfield but we have AAA to bring any up if we need one, but not to trade for one and have another contract.

It was 3-0 when I started this post. Now they are losing 4-3 after the post. We don't have one reliable starter. Doubront seems to be doing the best. Their last starting pitcher.

The only 3 doing good on offense are Aviles, Sweeney, and Ortiz. Ortiz is leading the a.l. in batting average.

That is what I'm missing from my dad during the different sport seasons.

My dad has a brick at Fenway Park (as does his father), he was buried in a Red Sox jersey and Red Sox hat in his hands. He has this at his grave site.

  A lifelong and forever fan...

So when the Red Sox won the World Series last week it was bittersweet. As a fan I was ecstatic. As my father's daughter I missed sharing that moment with him. It was hard not being able to talk to him, to hear the shared excitement in his voice, to picture the smile on his face as he likely would have said something like, "Wow Michelle, they did it! Another World Series! It took almost all my life to see them win 1 World Series and now they have 3 in 10 years!" to re-hash the Series. It made me miss him even more. It brought back the reality of him being gone.

When the Sox won in 2004 my dad sent me a World Series t-shirt and commemorative baseball.
When they won again in 2007 he sent me a couple more commemorative baseballs from the post-season.
Now they've won in 2013 and there won't be anything else coming from my dad this time. Bittersweet.

They finished in last place last season. They had a manager and players that just didn't mesh well. Which, in a way, might have been sort of fitting since my father passed away in July of that year. I wouldn't have felt like celebrating any post-season play last year.

But this team, this bunch of bearded-clad players ... my dad would have enjoyed them. He would have liked the players they brought in. He would have liked the coach. He would have liked their never-quit attitude. He would have liked their personalities. He would have liked the team mentality.

I guess he still did enjoy this team and this season and this World Series win ... it was just in a different place than here. And he got to enjoy it with his father. I know they were celebrating together.

Even though my dad is no longer here, I guess we do still have that thing, that connection between us. We still have it because I won't be able to watch the Red Sox without thinking of my dad.

Thank you, Red Sox, for knowing how to bring together a city, and also for making this daughter, who is missing her father, feel just a little bit closer to him.

 

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The Day After

Friday, 1 November 2013

Another October has come and gone. Another 31 for 21 finished.

Thanks to everyone for participating in the annual blogging challenge for Down Syndrome Awareness Month.

I know some people express that it gets harder every year to blog every single day in the month of October; especially about Down syndrome specifically. I know it feels like you've come to a point where you've said (blogged) all there is to say about Down syndrome.

But please don't be discouraged. From the beginning (Tricia) said that every single day didn't have to be a post that was Down-syndrome related; and that still stands today. The point of the challenge is just that - a challenge to yourself to blog every day. If you miss a few days - it's ok! - the blog police are not going to come get you!

And even if you feel like you've said all there is to say - just remember, you never know who all is reading  your blog. Every day there is a possibility of a new family getting a Down syndrome diagnosis and they might stumble across your blog. You never know who you are reaching. You never know who might come away from your blog that day with a better understanding of life with a child with Down syndrome.

Maybe it's time to change the name to National Down Syndrome Awareness and Acceptance Month. I know there is some consensus in the Down syndrome community that awareness has been raised and we don't need to raise anymore awareness; that people are aware and what we need to be advocating for is acceptance.

I agree about acceptance, but I'm not so sure the intentions behind awareness have been fully met. Yes people are aware of Down syndrome. They know of Down syndrome, but there are still stereotypes. There are still misconceptions. There are still negative and false assumptions about people with Down syndrome.

For the new parent receiving the diagnosis of Down syndrome are they really aware of what that means today? Or do they still have an outdated image in their mind of what Down syndrome was years ago?

Has the right kind of awareness been raised outside of the community? The kind of awareness that paints a more accurate picture of the capabilities of people with Down syndrome? Or are people still not aware about Down syndrome until they have a reason to be - until they have a loved one with Down syndrome in their lives.

I don't claim to have all the answers, but I don't think we can totally stop the campaign to raise awareness either. I think we need to expand that campaign from awareness to include acceptance though. Hmm... should I start a change.org petition to get "Acceptance" added on to that monthly designation?

Since today is also the day after Halloween here are a few Halloween pictures of The Supergirl, The Pirate, The (not-so-bandwagon) Red Sox fan, and The Civilian!

 

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Ten Years In

Thursday, 31 October 2013

I've been doing this for ten years now.

I've been a parent to a child who has Down syndrome for ten years. A decade's worth of experience, yet I feel like I have no great wisdom or advice to give.

I experienced the roller-coaster of emotions upon realizing that my first born child has Down syndrome: through being in a fog, to guarding myself, to depression, to acceptance, to moving forward. Yet there is no way I could write a memoir.

There is nothing in my experience that would be overcoming anything and coming out the other side unscathed.

Even though everyone has their own story, there is nothing in my story of having a child with Down syndrome that would stand out.

I had no major turning point, but rather a slow day-by-day grasp of finding my footing of being a new mother and a mother to a child with a diagnosis.

I have one vivid memory of an 'a-ha' moment. Kayla was a newborn and I can't remember if we had our 2 week visit with the pediatrician at that point or not. I just remember trying to find something, anything, on Down syndrome. Something that would give me a glimpse into what this meant and what to expect.

I was in my room and picked up the Mayo Clinic Complete Book of Pregnancy and Baby's First Year that was sitting on my dresser. I found the section on special needs and Down syndrome. I can't remember a thing that was in the book about Down syndrome, but I remember it was the first time I came across Emily Perl Kingsley's "Welcome To Holland."

I know people either love or hate this poem. But for me, in that moment, it was what I needed to read. Maybe it was because I found it on my own and I didn't have it thrust in my face from so many people right after Kayla was born.

By the end of the poem I was crying (I'm sure postpartum hormonal fluctuations played a role in that, too).

Yes, when I read the line, "But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland." it spoke to me. It opened my eyes that I couldn't sit around and be depressed because I would miss out on the experience of being a new mom; the experience of this beautiful, adorable baby in front of me. So it did help give me perspective.

But here I sit after 10 years and I've heard over and over the usual cliches about being a parent to a child with Down syndrome and find that I can't identify with most of them.

I don't feel that Kayla was sent here to teach me a lesson. There is nothing that Kayla does with the intent and purpose of teaching me, or the world a lesson. She is simply a child, living her life. She does not exist so the world can learn from her.

She has not taught me to be more patient. Although I should be more patient, it is a 'lesson' that I've just resigned myself to not getting. I do get irritated and impatient with her; just as I do with Lucas.
 
I don't feel that having a child with Down syndrome has changed me as a person. I am still the same person I was before I gave birth to Kayla. The only thing that has changed is that I'm more aware of Down syndrome whereas I had no connection with it before her birth. Giving birth to her did not cause some seismic shift in my personality, in the core of my being. I am who I am and that didn't change just because my daughter was born with Down syndrome, anymore than it changed when I gave birth to my son.

I don't feel that having a child with Down syndrome has made me a better person or parent. I fail at being a parent every single day.

I can say that I can't imagine my life without Kayla, but it has nothing to do with Down syndrome. It has to do with the fact that she's my daughter and once someone important is in your life, of course you can't imagine life without that person in it. I can't imagine my life without my husband, my siblings, my parents, my son. It's not Down syndrome that makes me say I can't imagine life without Kayla in it.

She's a blessing in my life, but not because of having Down syndrome. Again, she's a blessing simply because she's my child, she was a very much wanted first-born child. She's a blessing because she's my daughter and I always wanted a daughter.

She hasn't taught me the meaning of unconditional love because she has Down syndrome. I would love her unconditionally if she was born without Down syndrome and I know she, and Lucas, love me unconditionally because I am their mother. Down syndrome doesn't play a part in understanding what unconditional love is; it's unconditional because we are a family.

My journey is not extraordinary. It's a journey like hundreds and thousands of parents, all doing the best we can with what we have and what we know.

There is nothing special and there are no great life lessons to be learned from my journey.

So, no memoir from me (there are some great ones out there though!). The single piece of advice I could give a new parent of a child with Down syndrome can be summed up simply and it is live your life. Live your life with your baby the way you planned to before you received that diagnosis.

Having a child with Down syndrome does change some things (school decisions, employment, independent living, planning for the future in a more precise way) but it doesn't change everything.

You have a baby with Down syndrome, and just like that old TV show ... Life goes on.

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21 Life Experiences

Monday, 28 October 2013

21 life experiences that Kayla has had. Some of them are big life experiences (becoming a sister! flying to another country!) and some of them are little things (going sledding after a blizzard!) but they all add up to enjoying life, living life, and experiencing life.

1. Putting her feet in the ocean for the first time.
2. Flying to Denmark. Twice.
3. Taking a ferry to Sweden.
4. Enjoying the aftermath of a blizzard.
5. Going to an NFL game.
6. Having fun at the Boston Children's Museum.
7. Hiking a mountain.
8. Throwing out the first pitch at a Charleston RiverDogs game.
9. Going to Disney. And Sea World. And Sesame Place.
10. States Kayla's been to, or through: NM, AZ, TX, OK, WI, MO, IL, IN, OH, WV, VA, MD, DE, NJ, NY, PA, CT, MA, NC, SC, GA, FL.
11. Roller skating and ice skating.
12. Sledding at White Sands National Park.
13. Visiting a pumpkin patch and jumping in to a pile of hay.
14. Spending a weekend at Victory Junction camp.
15. Mastering the monkey bars.
16. Climbing a tree.
17. Participating in a dance recital.
18. Tea Party/Slumber party birthday.
19. Becoming a big sister. 
20. Giving yourself an oatmeal facial.
21. First job experience as a hostess at a restaurant.

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Royal Fairytale Ball

Sunday, 27 October 2013

We have taken the kids to a few plays at Creative Spark Center For the Arts and they have really enjoyed them. They are close to the action and the cast involves the crowd in parts of the play.

I saw they were having a Royal Fairytale Ball and the whole family was encouraged to dress up. I knew this was something my kids would enjoy so I signed us up. I only had to buy one item to complete our Royal Family transformation.

I was a queen. I wore the red bridesmaid dress from my sister's wedding and pinned my kids' dress up king/queen robe to my dress and wore the red headband crown from Kayla's outfit.

Kayla was a princess in a red and gold gown that my mom got her last year for Christmas. My dress matched hers almost perfectly. She wore the tiara that she wore when she was a flower girl in the above-mentioned wedding.

Lucas wore the knight cape with his shield and sword that he got for his birthday last year. He thought it was pretty cool that he was the only knight. (considering there were only 2 other boys, one a toddler and one a little older, odds were in his favor!)

Joe could have went as a king, but he opted for the jester hat that I picked up for him at the store. Every royal family needs a jester.

Joe wasn't alone in his jester-ness!

Twirling and dancing (notice she couldn't keep her tiara on as referenced in my sensory post; nor the necklace she tried on at home or the one they gave her there.)

Protecting the jester and chasing the Giant from Jack and the Beanstalk

Having her palm read.

Also, this family won the best dressed royal family award. One of my kids will be attending a free summer class next year!

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Sensory Processing or Just Her Thing?

Tuesday, 22 October 2013

Most of us have some sensory issues in some capacity. Whether it's a certain something we don't like to touch, or a certain texture of food or drink we don't like to taste. For instance Kayla likes apples and applesauce but she doesn't care for apple pie/apple crisp (or any pie for that matter). I don't think she likes the soft texture of the apples when they've been baked.

A lot of kids with a disability are sometimes also diagnosed with a sensory processing disorder.

Kayla's never been diagnosed with this and we've never had any real concern about it, but sometimes I wonder if she does have something sensory going on that maybe impacts her more than we realize. Or not. Maybe these things are just little quirks like we all have.

She does not like having her hair brushed. Sometimes it's because of little snarls or tangles, but I condition her hair and I spray it with de-tangle spray. There are times she acts like it's the most painful thing in the world to have her hair brushed.

She also will not keep anything in her hair. When she was younger I could put barrettes in (not that they'd stay in very well because of her fine hair, but I could still put them in) and put her hair in ponytails. Not anymore. No ponytails, braids, barrettes, or hairbands. Some mornings she'll tell me "yes" that I can do something with her hair, but she usually doesn't come home with her hair the same way.

Last year I bought her a few of those shirts that have the necklaces attached. She would come home with the necklaces in her backpack. She's doing somewhat better this year of leaving the necklaces alone.

Belts on her dresses? She constantly unties them and then fiddles around with the belts to the point of distraction until those, too, come off.

She won't keep on any other type of necklace, rings, bracelets or watches. She seems to like jewelery ... she'll get excited about something, pick something out of a treasure box, but she simply won't keep it on. She got a watch for Christmas last year and several times would ask for it on but less than an hour later she's asking for it to be taken off.

She has come home from school with 3 of these rubber band bracelets and 1 ring. She excitedly shows me that so-and-so gave her this one and so-and-so gave her that one. She'll wear the bracelets; briefly. Back in her backpack they go. I've tried encouraging her to wear the bracelets by saying that's what the other girls in her class are wearing (as if I was ever the fashion-conscious girl growing up - not!), and telling her how nice it was that so-and-so gave her a bracelet and she should wear it to show her she's wearing it. Some mornings she'll head off to school with it on, but it's in her backpack by the time she comes home. In other words, she doesn't like to accessorize!

She loves things like paintbrushes, leaves ... anything feathery. She likes just holding them in one hand and brushing it across the palm of her other hand. She likes pretending many things are paintbrushes and that she is painting.

Sometimes she'll get a hold of a pencil and just walk around all afternoon with it. And then there is the thing that she does with the erasers on the pencils that drive me crazy.

She absolutely loves these Shoulder Buddies. Or more specifically the hair. She'll brush their hair over and over and over on the palm of her hand. Or brush the air with them. Or shake them out and then mold the hair over and over and over again.

She also picks at her nails, and the skin around her nails. Her fingers look bad, but I can't get her to stop something she doesn't seem to be aware of doing.

What kind of sensory quirks or habits do your kids have?


 

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The Sibling Age Gap

Wednesday, 16 October 2013

When Joe and I started talking about when to try for a second child we envisioned having them relatively close in age. While the age gap between them isn't that large (4 years 7 months to be exact), there are times I wish they were closer in age; like now that Lucas has started school.

I thought it would be nice for them to grow up going to school together, but that's likely not to happen beyond elementary school.

Because Lucas was born in February he didn't start school until this year; because Kayla repeated Kindergarten she is in 4th grade this year, otherwise she would be in 5th and this would be their only year in the same school.

I know that students with disabilities can stay in school until they are 21, or maybe 23 in some states, but I don't know exactly how that looks and I know each state does things differently.

Does that mean when they are 18 and a senior they walk across the stage w/the classmates they've been with for 4 years and then return back to their high school to do it all again with the next group of seniors? And then do it again after that? Or do they just walk across the stage the one time with their classmates but keep going back to school for the next 3 years? To do what? Take all the same classes? Go to another separate part of the school to work on life skills? Take 3 more years for a job-type class? I have no idea and I haven't looked too much in to it since things could be different by the time Kayla is in high school.

But right now I don't want that for her. I don't know what it will be like when she's in high school, but I don't want her to go through the motions of walking with her class at age 18 and then just continue to go back to the school for the next 3 years. I don't know what all the answers are though.

IF she does do something like that, then I guess it would be possible for she and Lucas to be at the same high school at the same time.


But as of right now they'll only have one more year of being at the same school together and riding the same bus together. (Unless we hold her back to give her another year in elementary school before transferring to middle school - but I'm not sure I want to do that either given that she's already repeated a grade and would then be 2 years older than her classmates).


When she starts middle school he'll only be in 2nd grade. And when she's finishing high school he'll be finishing middle school.

I don't know why this feels so important to me, but it does make me somewhat sad. I wish that she would have her brother with her through the school years. Just to have that familiar face and someone on her side. And there's probably a part of me that was hoping he would be there to 'watch over her' - keep an eye out for her.


Overall I just wish all this school stuff and decisions and placements and transitions didn't have to be so hard.

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Girl Scout Fun

Tuesday, 15 October 2013

I recently signed Kayla up for Girl Scouts (as if we don't have enough going on!) but a friend of mine convinced me to give it a try. Her 2 daughters are in this troop and Kayla knows them too.

Another opportunity for Kayla to get out, be social, and make new friends.

Last weekend we had our first event/outing with the troop (pumpkin patch) and Kayla had a great time. Looking forward to next month's trip to go ice skating!

 

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Mother-Son Time

Sunday, 13 October 2013

Since Lucas started Kindergarten I don't get many chances to spend time with just him anymore. I remember the same feeling after Kayla was in school and Lucas was born ... not having much mother-daughter time with Kayla. It was rare to get to spend some one-on-one time with her.

I know it's important for each child to have some alone time with each parent for that undivided attention, and while my intentions are good for trying to schedule that, I often fail at finding the time. Weekends are usually pretty packed doing things together as a family that we don't get much time to go our own ways with each child.

As preschool was winding down for Lucas I was treasuring the last few times we were able to do things together like the occasional breakfast at IHOP which was a treat for him since Kayla can't eat there.

Looking back on my time with Lucas before he started Kindergarten I feel like I didn't take advantage of all the 'free' time we had together. That I didn't get us involved in enough things. That we didn't have enough special days together exploring our community. Although Joe said it seemed like I was always telling him what Lucas and I did over the week; I look back and can't remember much of what we did!

A couple of weekends ago I had planned for us to go, as a family, to Drayton Hall since it was free for Smithsonian Museum Day. We've been to this plantation before, and while the kids aren't too interested in the house tour, it is nice to walk the grounds and take the trails by the river and the marsh walk.

Kayla ended up having a friend over to play that day and when her friend wasn't going to the plantation Kayla wanted to stay home instead. Lucas said he still wanted to go to the plantation and since Drayton Hall is part of the Charleston Explorers Club we could get the kids' passports stamped.

So Lucas and I spent a nice afternoon together; just the two of us, exploring the grounds of Drayton Hall, and counting all the large spider webs on our marsh walk. And it reminded me that I need to make more of an effort to find time for Joe-Lucas, Joe-Kayla, Me-Kayla, Me-Lucas time together!

 We thought it was pretty neat to see how this tree grew around this old railroad tie and eventually lifted it off the ground.

 

How do other families fit in time with each child to have one-on-one time with each parent?

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What I Didn't Know

Saturday, 12 October 2013

I really don't remember what was said to me by the doctor, who after examining Kayla, came to talk to us about some characteristics she had and that he suspected Down syndrome.

I already knew the moment she was born and I looked at her face and in to her eyes that she had Down syndrome.

I wanted him to dispute what I suspected, but he didn't. So while he was talking to us my mind went blank. I didn't register all that he said. It was a short conversation. I don't remember being alarmed by anything he said, I don't remember anything particularly negative that he said either. I think he had a somewhat neutral to positive tone. But I couldn't tell you what he said.

I know many other parents had a different experience in which the tone was largely negative focusing on all the potential medical issues that may or may not affect their child.

No one knows anything about what their child will be like after they given birth. Whether they have Down syndrome or have the typical 46 chromosomes. No one can tell anyone else what life will be like with their child and I understand that.

The things I didn't know then ... Kayla's personality, her quirks, her likes and dislikes, her abilities are what made it somewhat harder at the beginning. Even though rationally, I know that no one could tell me those thing about Kayla, just as they couldn't tell me about Lucas.

But what would be nice to hear along with the Down syndrome diagnosis would simply be that you will take your baby home and live life ... no, not just live life, but experience life with your child. And that experience includes frustrations, challenges, joy, and love.


I'm re-sharing this post I wrote 2 years ago for Parents.com; Having A Child With Down Syndrome: What Nobody Tells You.

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Buddy Walk 2013

Friday, 11 October 2013

Last weekend we participated in our 11th annual Buddy Walk. It seems odd to say 11th annual when Kayla is only 10, but we walked in our first one the year she was born, 2003, when she was just shy of 3 months old. Technically this was our 12th total walk since we participated in two walks in 2009 when we lived in MD.

From what I can remember of each of the 12 walks ... we've always had a nice, sunny day ... except one time. That cold, rainy day from the Northern VA walk. I'm talking coats, scarves, and gloves kind of cold!

I guess when you've lived in NM and SC the walks usually end up being warm/hot and sunny. And add humid to the mix when you're on the east coast! Last weekend was no different. Although there was some rain that day, it seemed to have rained all around the area ... except Daniel Island where the walk was held.

Kayla enjoyed snuggling up to this sweet baby (and she kept trying to wake him up!) He was born at Holloman AFB, NM ... just like Kayla was!


Our team, minus my mom who stayed under the shade!


Kayla's BFF


At the end of the walk: red, hot, and sweaty!


With the band:
 

Future drum major?
 

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