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Thursday, August 28, 2014

A Different Kind of School Issue

On the 6th day of school my son's emotions overflowed and spilled out.

 It started out innocently enough. He came home from school talking about his homework. He was trying to explain something about having to read sight words, but the teacher said they couldn't turn it in tomorrow, but he already knew the words. After getting him to calm down and explain to me and show me the homework I got a clearer picture.

On the homework sheet was a picture of a tree with a bunch of apples all around that had sight words written on them. The instructions were to practice these words all week and color in the apples of the words you knew. That was it. But he said the teacher said something like, "And nobody should be turning this in tomorrow."

I told him to read the words on the sheet. Did you know them all? Yes? Good. Color them in. That is what the instructions are - color them in when you know them and you do know them. 

I asked him if he was worried if he turned it in tomorrow that his teacher would yell at him and he said, "Not yell." Oops I didn't mean that literally. I asked him if he thought he would get in trouble. He said, "Well maybe clip down." He wanted me to write a note with his homework saying that he did read and know those words. I assured him I would and I tried to explain why I thought the teacher was saying nobody should turn it in the next day. I told him that the first week or so of school is usually spend reviewing what was learned the year before and maybe his teacher didn't think anybody knew all the sight words so she wasn't expecting it to be turned in the next day. Maybe she wanted to make sure everyone didn't go home and just color in the apples without really knowing how to read all of the words.

In the middle of all this I also read out loud the weekly newsletter about what they would be doing that week and the homework for the rest of the week. Reviewing #s 1-10. Matching #s 1-10 with the written words.

Then he started talking really fast like he sometimes does when he is upset and/or frustrated. These aren't his exact words, but it was pretty close to what he was trying to say, "Why do I have to just review everything? Why do I have to review everything that was in Kindergarten that I already know? Why did I have to review in Kindergarten everything that I already knew even before Kindergarten? It's just review, review, review." Then I noticed his eyes were red and a little wet at the same time he brought his hands up to wipe his eyes and exclaim, "Ahhh, and why do I feel like I just want to cry?" And with that exclamation and my arms enveloping him in a hug the tears came.

I pulled him on to the couch to snuggle with him and try to talk him through what was going on. I asked him what he was feeling. "I don't know." Are you feeling frustrated? "I don't know." A few more I don't know responses to my questions. Not wanting to put words in his mouth, or thoughts in his head, but trying to give him an expression to what he was feeling I asked, "Are you bored?" Finally a pause. "A little bit."

He told me about the "Crazy Color Creatures" book and his "...teacher read each page. Stopped. Told us to take out the pink crayon. Stop. Now underline the color word and any rhyming words. Stop. Same thing on each page. Take out this crayon. Underline this word." He was trying to explain that it was all done as a whole class following along. He said he just wants to get his worksheet and just be able to sit at his desk and do it. He wants to do things like that on his own. An example of the sentences in this little packet, "Sue Blue has the flu."

He is reading on a 2nd/3rd grade level. He read 30, if not more, books this summer - chapter books like Magic Tree House. I imagine it is so hard for him to sit and listen to a teacher read each page and waiting to go over each page one-by-one like that.

He wanted to know when he could start AR books again. (Accelerated Reading books at the school library that he was able to start doing in Kindergarten). I told him the newsletter said after the first parent-teacher conference they would discuss whether the student was ready to do AR books.


For the number review of matching ONE to 1 and TWO to 2? It's not challenging enough for him.

He is doing things like this in a workbook we have for him at home:

"Write the number seventy-five thousand, two hundred and twenty-two" and
"Write the number that has 2 hundred-thousands, 7 ten-thousands, 7 thousands, 5 hundreds, 3 tens and 9 ones." and
"What is the place value of the digit 3 in the number 526,310" or "What is the place value of the digit 4 in the number 34,890."

I fully realize a number of things
- Teachers spend the first couple of weeks reviewing material from the previous grade because of loss of retention over the summer
- Teachers have a curriculum/lesson plan they have to follow
- The school year just started
- She hasn't done reading/math assessments yet to know where all her students are at so she can start differentiating instruction
- He is not the only kid in class who can read, or knew the sight words on that paper (he said several other kids also turned it in the next day)
- He is not the only kid in class that could be bored by reviewing #s 1-10 and matching the written word to the number 

But what I do know is he is my child and he was upset and frustrated to the point of tears. What I don't want to happen is for him to get so bored with school he doesn't enjoy going and/or that the boredom will manifest in behavior issues - so far that has not happened as he clips up virtually every day - but it could be a possibility.

So when do I talk with the teacher about maybe giving him other things to challenge him? Something like matching words to their numbers through 100 instead of up to 10?

I think parent-teacher conferences are usually held before the first report card, so the first 9 weeks of school. Do I wait it out until the conference to talk to her about all of this? Tell him to suck it up for the first weeks of school while they review material? Talk to her now? Although this could all be a moot point since this week is just about over and they won't be matching words 1-10 to the numbers after this week. But the material still might not be challenging enough for him and he might still find himself 'bored' with reviewing things that he knows like the back of his hand.

If there are any teachers reading this - how would you like a parent to approach you not about concerns for their child falling behind, but concerns about their child needing more to be challenged? Is it too soon in the school year to mention this to his teacher?

There are some days I really get why parents homeschool. And days like this one make me seriously consider it.

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Monday, August 25, 2014

ADHD in Action

Kayla was diagnosed with ADHD about 2 years ago. Initially we decided not to medicate her with prescription drugs - mainly because of the side affects. However we're starting to reconsider that because I know not being able to focus and concentrate is affecting her at school and impacting her ability to absorb and learn new concepts. We see it every day when we try to work with her for 5 minutes at the kitchen table on school work. I can only imagine what a full school day is like for her. But to medicate or not to medicate is for another post.

Today is a glimpse into what I imagine to be a classic example of ADHD.

Kayla was in a drama camp this summer. She was one of 3 mice in the adaptation of The Hare and Tortoise. In this video clip you can see how distracted, and not so focused on the scene, she is with her shadow on the wall and her mouse tail. Lucas is sitting in the front row in the gray shirt with black stripes. She's trying to show him her tail.

She doesn't typically like anything in her hair, it doesn't help that the headband ears are slightly too large for her head. Throughout the whole play she kept taking the headband off and on, off and on, and adjusting her hair over and over and over to the point it was making me want to pull my own hair out!

While all of that is going on she does manage to get most of her lines. Even though in this clip a couple of her lines are said while she's facing the wall and not the other actors! Oh well - at least she knew it was her turn to speak and remembered her lines. Although one of her lines "We have ideas!" she missed her cue, but then came back with "Great ideas".

In case you can't hear it very well her first line is "where's my shoe?" After the "great ideas" she says "and kind", "he stole my shoe", followed by "we're underfoot".

I love this girl - Down syndrome, ADHD, and all! She makes me laugh in this video, it's just so Kayla.



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Tuesday, August 19, 2014

Another First Day of School

School started yesterday for my kids. I can not believe how fast summer went by. I guess it would seeing as how busy we were this summer.

Kayla was supposed to do Extended School Year. ESY for her was going to be 4 days a week, 3 hrs a day, and 6 weeks. However, that was before our summer schedule fully materialized. When all was said and done she had 1 week of VBS, 2 out of town trips, 2 sleep-away camps, and 2 local camps - one of which was 2 weeks. There was also one more out of town trip, and one more week of camp, but both of those were after ESY ended anyway. When I looked at the calendar I realized she would only be in ESY for a total of 5-7 days, which weren't even consecutive. So she didn't go at all. I tried not to feel too guilty about that, because even though academics are important -and Kayla does need extra work in that area - so, too, is being a kid and enjoying your summer and life experiences.

 So now Kayla is in 5th grade and Lucas is in 1st. They both knew some of the other students in their classes, so that was nice. It always help to go in to a new classroom and see some familiar faces!

This will be the last year that they are in the same school at the same time; and that makes me a little sad! Sometimes I wish they were a little closer in age, but there are some things you just can't help. I can't believe Kayla will be in middle school next year and I'm trying really hard to NOT think about that right now...and to just enjoy this last year of elementary school! It does my heart good to walk through the school with Kayla and hear so many other kids call out "Hi Kayla! Hey Kayla!" - often before she notices or says hi to them first.

Looking forward to a great year for both of them!

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Friday, August 15, 2014

Silk'n Blue (Review)

There are times I wish I were still a teenager - you know - not having any of those oh-so-fun adult responsibilities! But one thing from my teen years that I wish I could've left behind is acne.

Yes, I'm 41 years old and acne still bothers and frustrates me. I'm not a teen anymore, why can't I just have clear skin finally?!

I have tried a number of different facial cleanser and other products to help clear up and prevent acne, but the prevent part never seems to work for me.

I've been to a dermatologist and was on prescription medicine cream for my face as well as an antibiotic. While that did seem to help and lessen the breakouts, being on an antibiotic is not a long-term solution. After I stopped the antibiotics it was only a matter of time before the acne started again.

I don't have severe acne and I have much less than I did as a teen ... but it's still enough that these breakouts frustrate me, and at times depress me.

I had the opportunity to try Silk'n Blue for several weeks. What did I have to lose if it didn't work? It isn't prescription medication to take, or tubes of creams to try out, or chemical treatments. It is an at-home acne treatment system that destroys acne-causing bacteria and dehydrates oil-producing glands to prevent future breakouts. The Blue device starts neutralizing bacteria immediately.You'll see the results of clear skin in 3-7 weeks, sometimes sooner.

So what is Blue? It is a hand-held light device that incorporates blue-light therapy. The American Academy of Dermatology says this is the best-known  light therapy for acne treatment. It is clinically tested, FDA-approved, and recommended by dermatologists and has no harsh chemicals that dry out the skin.

That was a biggie for me - I hate using the topical creams and after a couple of days my skin is dried out and peeling and then I'm dealing with that!

So I've used the Silk'n Blue for several weeks and I have been impressed. As I just mentioned - no dried out skin!

It is easy to use - just place on the acne breakouts for 3 minutes and then move to another section of your face for another 3 minutes. It combines the blue light with heat radiation, but the tip has a sensor so it never gets above 106 degrees. There is no burn or redness to my face at all after using this.

I have been impressed and satisfied with this product. I think I've only had 2 or 3 small pimples crop up since using this; which is much less than I would have during that same time period when not using Blue. While the pimples weren't necessarily gone the next day they were gone in a shorter amount of time and they stayed small compared to the size they usually get. Using Blue seemed to keep the pimples contained and treated them before they could get inflamed.

Highly recommend the Silk'n Blue whether you're a teen or an adult: If you're bothered by acne this product is worth a try! You can use the coupon code EXTRATWENTY to get 20% off by Sep 30, 2014.

On Twitter and FB #silknproducts, #mc #sponsored


Disclaimer: I received this product from Mom Central and Silk'n to try for free. All thoughts and opinions are my own.


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Thursday, August 14, 2014

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.

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Wednesday, August 13, 2014

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.

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Sunday, August 03, 2014

Notes to the Tooth Fairy

Way back at the beginning of summer, and I say way back because my kids go back to school in 2 (!) weeks, Kayla lost a tooth while she was at Vacation Bible school. And when I say she lost it, I mean she literally lost it. I picked her up, she told me her tooth came out, showed me the missing spot, but when I asked her where her tooth was she said she didn't know.

We intended to write a note for the tooth fairy that night, but forgot. One day turned in to another in to another and before I knew it we forgot about her missing tooth and the letter. She didn't seem too concerned about not putting her tooth, or a note, under her pillow and getting something in return. Maybe because this wasn't her first, or second, or third (I've lost track of how many she's lost now) lost tooth.

But Lucas talked about writing a note. When he lost his first tooth in Indy he said he wanted to write a note to let the tooth fairy know that Kayla lost-lost her tooth. But with how busy we were at convention we just didn't get around to it.

Lucas eventually did get that note written, as well as a thank you note to the tooth fairy for the $5 he got for his first lost tooth.


Speaking of loosing teeth. Lucas came back from his sleep-away camp with his second lost tooth! And the tooth fairy visited him at camp ... he was excited to be left with these goodies!



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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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