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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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Wednesday, July 09, 2014

A Letter To Myself

Writing prompt #3 for the Summer Blog Hop Series challenge is:

The Early Years: A Letter To Myself

Dear Twenty-Something Michelle,

Hello! This is a letter from your future self. It looks like you are settling in nicely to your life. Things seem to be going well, you have a great husband, a job, a new house. Ok ... a not-so-new house considering we are talking about military housing!

You are now at a point in your life when you and Joe want to start a family. Great! Now settle in for the long haul. I don't mean to burst your bubble, but this isn't going to happen as easily, or quickly, as you think it might. Prepare to be on the 'trying to conceive' journey for over a year.

I will say that thankfully you won't need to start fertility treatments, although you will have that initial appointment or two to get the ball rolling.

Since you don't want to find out the gender as you'd like to keep that a surprise, I won't spoil that for you by revealing it in this letter.

I do, however, want to give you a heads up about your newborn baby. Your first born child will be born with a medical condition. Your child will have a slightly different genetic make-up than you or Joe have - something to do with the chromosomes.

I'm not telling you the specific diagnosis because I think it's important for things to happen the way they were supposed to happen. I just want you to know that you will receive some news upon the birth of your child. News you weren't expecting to hear, and news you don't really imagine for your child.

But I also want you to know, and to remember, that even though your child will have this life-long diagnosis (there is no cure), this child is still your child. This child is still the child you and Joe created together. This child is still the child you get to take home and raise. This child is still the child you wished and hoped for. This child is still the very much wanted, and loved, child you will carry for 9 months.

There will be some challenges, but there always is in parenting. It is ok to feel whatever you will feel in the moment. It is ok to be afraid of the future because the unknown can be scary.

As I'm writing this to you now, this child-to-be will be 11 years old in 6 days. This child has already seen much and accomplished much in 11 years.

This child just went to 2 sleep-away camps this summer and had a blast - I'm sure that's something you won't imagine happening when you receive the diagnosis.

Enjoy your newborn. Cherish your newborn. Raising your child, getting to be a parent - that is what matters and what counts. The diagnosis you can deal with one day at a time. The diagnosis will become secondary.

I'm not going to promise that everything will be easy, because it won't.

But I can promise that everything will be all right, because it is.

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Sunday, July 06, 2014

Back From Camp

Kayla recently returned home from her second sleep-away camp and both were a big success. Almost too much of a success!

On my way to pick her up from her first camp I imagined that she wouldn't be happy to see me at all. What with her reaction upon my returning with her sneakers the day I dropped her off? I thought for sure she would say that she didn't want to go home.

Instead I was pleasantly surprised when I received this greeting:

"MOM! MOM! MOM!" screamed at the top of her lungs as she ran all the way to me with arms opened wide and then gave me a big, tight, lingering hug. I guess she missed me after all.

And then that was short-lived.

She fell asleep on the way home. Just over an hour later she woke up, disoriented, and said, "Where we going now?" Me, "Home." K, "No!" Then she fell back to sleep for about 5 more minutes.

Woke up and said, "Mom?" Me, "What Kayla?" "I want to go back to camp." she managed to get out before the tears. "I want to go back to camp now." And then she sobbed. And sobbed.

She refused to get out of the truck when we got home. Wouldn't give Joe or Lucas a hug after I finally managed to carry her inside.

Lucas tried to cheer her up to no avail. She was despondent. She kept saying she wanted to go back to camp now.

I thought a good night sleep would help and she would be back to her usual perky self in the morning.

Not so much. 

When she woke up she stayed in her bed crying about wanting to go to camp and see all her friends. 

I told her we had to get up, get dressed, eat breakfast and take Lucas to VBS and then she had to help me get some things at the store.

When we returned home I sent her upstairs to get her glasses that she left on her dresser. She never came back downstairs. She stayed in her crying off and on for about 2 hrs. I could hear dresser drawers open and close. I could hear her talking to herself. I knew I had to let her work it out for herself, because up until then she didn't want any comforting. 

When it was time to get Lucas I went upstairs to find Kayla back in her pjs and in bed. She had also repacked her suitcase - she put all the contents of her pajama/socks/underwear drawers in her suitcase.

It took about 1/2 a day before she finally was more like herself and she went outside to play with Lucas. 

I'm glad she had such a great, fun, amazing time at camp, but wow! Emotional overload!

She did better coming home from her second camp though. Maybe she was resigned to the fact that she was going to come home whether she wanted to or not! Or maybe it was because this camp was only 3 nights away. Joe said she was a little sad and quiet on the way home, but it was nothing like when she came home the first time.

I'm so glad she had the opportunity to attend both of these camps and have a little bit of 'amazing' built in to her summer!


Tuesday, July 01, 2014

When You Have A Son

If you are raising, or have raised, a boy, you just might have a story like this to tell one day.

It was about 10:45 at night. Joe had gone to bed about 10 minutes earlier. I was in the living room, on my laptop answering emails when I heard footsteps coming downstairs. 

I thought it was Kayla wanting water, but the fridge door didn't open, she doesn't say anything, and the footsteps go to the pantry. 

I briefly worried that she was going to open the door to the garage and the alarm would go off. 

I stood up and heard some rustling noise and saw a head by the shelf so then I thought she was confused and getting cereal.
As I took a couple steps toward the pantry I realized it was Lucas. 

I went to stand next to him to see, and ask, what he was doing. When I got next to him that's when I discovered exactly what he was doing. 

He was peeing in the trash can. 

Yes, he emptied that water bottle he drank on the way home from the water park (I knew that was a mistake!) into the trash can.

He peed, and peed, and peed, into the trash can. 

All I could do was laugh, then cry because I was laughing so hard, then laugh some more. And be thankful that at least he managed to aim and hit the trash can w/minimal light from the living room. 

I had to go wake Joe up to tell him what was going on. He heard my laugh/cry and it startled him awake, "What?! What is it? What's wrong!?"

I managed to blurt out that everything was fine, that I was laughing. In between breaths I managed to get out, "Lucas just came downstairs and he's now in the pantry peeing! in! the! trashcan!"

He had never done that before, so I felt it was a milestone worth of waking Joe up for.

When I tucked Lucas back to bed I told said, laughing again, "Lucas, you just peed in the trash can!"

He looked at me like I was the crazy one.

So who has a peeing-in-weird-places-in-the-middle-of-the-night stories to share?

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Monday, June 30, 2014

Passport To Imagaintion Part II

Last week I mentioned the Passport To Imagination program at Michael's. Follow up to that post after Lucas attended last Monday.

The class seats 16 kids, and 16 kids were registered, but only about 10 showed up. The parents don't have  to stay with their child(ren) either; you can sign them in and leave, and then sign them out when you pick them up.

3 other moms stayed; I stayed for a bit at the beginning, then I browsed around the store and came back near the end.

If all 16 kids had shown up and none of the moms had stayed I think it wouldn't have run as smoothly since there wouldn't have been extra hands to assist the kids when needed with their projects.

The project they made was this Perler Dolphin. After getting all the beads on the pad it had to be ironed. Since they can only use products from the store they couldn't use a regular, full-size iron. It was a small fabric type iron. Which worked fine, it did the job, but there was only one iron being used and with the smaller size of the iron it took a little longer to finish the project. While their dolphins were being ironed the kids completed their second project - a paper cut out of dolphins created to look like a 3D image. This didn't take up too much time. Thankfully not all 16 kids showed up or else I don't know how long some of the kids would've had to wait for their dolphin to be ironed. I don't think this would have been completed in the 2 hours of the class.

The at-home project that I thought they got to take home to do was actually a suggested project that you can buy the materials and do at home. It doesn't actually come with the class.

Since each week is based off a road-trip theme of going to the different museums I thought that during the class there would be a presentation or information or story about each of the museums, but there wasn't. There is a Passport to Imagination guide-type book that shows each class, the dates, the museums the projects are based off of, the projects, and activities to correspond with that day. In this guidebook there is information on each of the museums though, so even though we're not able to make it to every class we can still do the activities in the book and bookmark projects that we can do at home.

Lucas enjoyed the program and creating his dolphin. He thought it was neat how it came out after it was ironed. He has gone through the guidebook and asked me if he can go to several of the classes that he is interested in making the craft for that day.

He had a lot of fun, was excited about it, and more importantly he made a new friend. He and this other boy hit it off so well that they took it upon themselves to exchange phone numbers in hopes of getting together outside of the class.

Overall it is a fun and inexpensive activity to do during the summer and we will try to go back for a few more classes this summer.

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Thursday, June 26, 2014

My Connection With Disability: An Introduction

The Summer Blog Hope Series is going to be a challenging one!

Bloggers are going to work their way through a whole arc of disability connection by sharing their stories over several preset prompts.

The first prompt is My Connection With Disability: An Introduction

If I have any first-time readers to my blog I will start by saying that my connection with disability is being a parent to a child who has Down syndrome.

Prior to that I had no real involvement to the disability world, or community. (I had a grandfather who had Parkinson's disease and a couple of strokes, but not living near him or being able to visit often, I didn't have as direct a connection with disability as I did when I became a parent.)

Kayla is my first-born child and we suspected she might have Down syndrome when I was pregnant with her. I had the triple screen blood test which came back as 1 in 88 chance of having a child with Ds. We declined an amnio. Level 2 ultra sounds didn't reveal any markers that gave us any more of an increased risk.

I didn't know anything about Down syndrome. Sure I had heard of it, and like many people from my generation I did grow up watching Life Goes On - so I knew one of the characters (Corky) had Down syndrome. Beyond recognizing the facial characteristics of Down syndrome I knew nothing else. I didn't know anyone with Down syndrome and there weren't any students with Down syndrome in any of the schools that I attended.

I didn't know anything about Down syndrome except to know that it wasn't something I wished for my child to have; in fact, every night after getting the results of the triple screen I would go to bed praying "Please God don't let my baby have Down syndrome, please let my baby be ok."

Waiting for Kayla to be born also meant waiting to find out her gender and the number of her chromosomes (although at the time I don't think I even knew that Down syndrome was the result of an extra chromosome.)

As soon as Kayla was born and I looked at her face I knew she had Down syndrome. I thought she had the tell-tale facial characteristics and there was no denying that I gave birth to a baby with a diagnosis. There was no denying that this was not how I envisioned parenthood to begin.

I really don't remember much of what I thought about Down syndrome, or what I thought it meant for Kayla, or what I thought it meant for me as a mother and of our future. I had nothing to go on, no expectations really. I just had a feeling of my daughter has something. It became this thing she had but I didn't know anything about it or what to do with it.

To read more about how I felt over the possibility of having a child with Down syndrome read my post "Guilt" (this became a story in the book Gifts).

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