Sunday, August 30, 2009

I knew this would happen

Anna is sick and won't be going to school tomorrow. She hasn't slept well the last three nights and is up again right now. I'm sure by the time she's better, Dominic will be sick. At least we haven't had any seizures! I've gotten completely hooked on Professor Layton for the DS, so that's been keeping me busy while I snuggle with my Booski. She is not a good sick person, bless her heart. I hope she feels better tomorrow.

Saturday, August 29, 2009

First week of school

If you want the abbreviated version... Jenny = worst first day ever, week ended better; Anna = fantastic first day and wonderful first week; Dominic = rough first day, a little better end to the week but still a long way to go.

I would've never guessed that Anna would be the one to have the best first week of school! Her 2nd grade teacher is wonderful and such a good fit for her. Anna continues to see the same team as last year for Resource, ST, OT and she has the same aide so that continuity is fabulous for her. I was joking with Curtis that she'll probably come home with a cold soon and be out of school next week. Sure enough, Anna came down with a sore throat yesterday and is sick today. Let's hope the seizure monster stays away this weekend.

Dominic came home the first day complaining that "there are so many rules... there are like 70 rules and I can't remember them all!" He's so funny. He really had a hard time. He was called a tattletale and crybaby the second day, got in a physical fight, and lost his best friend on Thursday. His teacher said that he is trying really hard and that each day gets a little better than the first. Curtis and I met with the child psych yesterday and got quite a surprising report about Dominic's test results. I'll share those in my next blog post.

Jenny broke down and cried, gutwrenching sobs, after her first day of her senior year (this was after getting home after work... poor thing had to work on her first day of school). So much went wrong for her starting with her schedule, she lost her senior ID and parking sticker, she has no classes with friends, she was invisible at lunch, she won't get to see her boyfriend, Chris, during lunch because of his college class schedule, she had a rough night at work, and she found out she failed her history class again (she was in AP US History last year and failed by 1 point, and had to take it at ACC this summer, and failed that... which is so weird since she passed the AP History exam... so that means she has college credit for US History but not high school credit and if she can't get high school credit, she can't graduate). UGH!!! We've managed to sort out most of the issues, but it was so hard to see her cry like that. Life is too short to be that unhappy. Curtis and I also suggested she not work during her senior year and we'll pay for her essentials. So last Saturday, she gave notice and her boss was not very gracious about it and asked her to work an extra week and Jenny is so nice, she said yes. With marching band and school, it's just too much. For example, last night Jenny didn't get home until 2 am because they had a game in College Station (and wth is up with that? why do they have to drive 2 hours for a football game???) so yesterday she had to report to band practice at 8 am, then get on a bus after school, and not get home until 2 am. She had to be at work this morning at 9! I feel so bad for her. I called her boss two days ago and explained that Jenny cannot work an extra week and I hoped it would not affect her ability to get a good reference but she needs to focus on her school work. The lady was not very nice about it and ended up hanging up on me! What is wrong with people? Ugh.

So I'm happy to report that all the kids had better ends to the week than beginnings. I think with the right support, all three of them will have a good year though it's going to be a bit of work getting things set up for them initially.

Here they are on the first day of school!

Dominic's class

Anna's class

Thanks for reading!

Friday, August 28, 2009

A mom and daughter day with Jenny

Last Sunday, my mom and Curtis agreed to take on kid duty all day so I could take Jenny shopping for new clothes for school. Jenny never complains about having worn out shoes or clothes that don't fit, so she really deserved a shopping spree. We had been saving up for a little while so we had a nice small-ish budget and we were ready to leave the house just before noon. We were so excited that we both put on makeup, including lipstick! (Just please ignore my 2-inch gray roots. My hairstylist said my base color has officially changed from brown to gray, lol. Now that the kids are back in school, a haircut is on my to-do list.)

I got this amazing shot of Jenny, I think my photography skills are improving. I would love to take some classes to really understand the full capabilities of my camera. Isn't she beautiful??? This is completely unedited!

We shopped until we dropped, not getting home until 6:30. She was so excited and put on a fashion show for us after the little ones went to bed. It was nice to see her happy and confident. The first day of school was really rough for her, but I'll post about that a little later.

Autumn Approaches by Becca

My dear friend, Becca, has been so busy! She already has another new kit out and I love it. I'm sooo ready for fall. We've had 67 days of 100+ degree days already this year. Her new kit is called Autumn Approaches and it's available at Enchanted Studio Scraps.

Autumn Approaches:

My layout:

Thanks for looking!

Monday, August 24, 2009

Back to school tomorrow!

Jenny starts her senior year of high school tomorrow. We spent six hours together yesterday at the mall getting her desperately needed new clothes. Anna starts second grade tomorrow and Dominic starts kindergarten. I meet with Dominic's child psychologist this Friday to go over all the test results from his evaluations... I'll let you know how that goes.

Today I met with Anna's new second grade teacher and her main resource teacher to go over how our summer went and talk about her change in seizure presentation. I was suprised to see the art teacher, music teacher, two PE coaches, the school nurse, her speech therapist, her one-on-one aide, and the principal also join us. Suddenly I felt like I was conducting a formal meeting! Everyone was very attentive and asked questions about how to help her if she should have a seizure at school. She is at higher risk than last year since the last seizure she had really had no cause that we can discern. We decided to not tell her classmates about the epilepsy... if she has a seizure at school, then we'll talk about it. We went over the protocol for using the Diastat and I reminded the nurse to call 911 should we need to use it since it depresses her respiratory system so much; she'll need supplemental oxygen. I really felt the mood shift talking about this in such detail and it hit me how serious it is dealing with seizures.

The speech therapist asked if we should talk about Anna's autism with her classmates while she's out of the room. I think it's a good idea... from the experiences my other mom friends have had with their special needs kids, peers start teasing in the third grade. If her peers are informed now, maybe they will stick up for her later? I'm hoping for tolerance and acceptance, Anna's behavior can be aggressive (especially when she's scared) and different so I want to be sure the kids are comfortable around her and not scared of her. They asked if I would like to talk to the class. Whoa! I'll need to do some reading on how best to present this information. Maybe since I love her so much, that love will shine through and the kids will want to be her buddy. I hope, I hope.

I'll be posting some pictures later this week of the first day of school, Dominic's birthday party, and various other events this past month. This will be the first time that all three kids are in school at the same time! Woohoo! I can get caught up on requests and start doing some other projects that have been on hold.

Friday, August 21, 2009

The Ballad of the Night by AnnaBV Designs

Hello friends! Anna has a new kit out today at ScrapMatters called The Ballad of the Night. It is simply gorgeous with lush textures and beautiful elements. I chose to scrap a layout about myself this time... I told you turning 40 made me contemplative!

The Ballad of the Night:

My layout:

The journaling reads:
Today I turn 40.
In some ways, time is going by so slowly.
Being a mother to three, one with special needs,
takes it toll. Each day is like the day before...
demanding, exhausting, and filled with the most
consuming love I've ever known.
Where am I in this? Who am I?
A wife, a mother, a daughter, a friend.
A nurse, a doctor, a researcher, an advocate.
What is next for me?
Time is slippery.
Quickly speeding by, I see middle age...
a chance to redefine ME.

Thanks for looking!

Monday, August 17, 2009

A new endeavor for a friend!

One of my dearest digital designer friends has made the leap from siggy maker to digital scrapbook creative team member to digital scrapbook designer! Exclusively designing for Enchanted Studio Scraps, Becca made her debut on Friday and has opened her store... By Becca!

She has created two kits to get started, Love Reborn and Fading Summer. Here are the previews and my layouts:

Love Reborn

My layout:

Fading Summer

My layout:

Becca is also having a CT call, so please send in your application if you are interested in working with a super sweet and talented designer!

I am so excited to be working with Becca in this capacity. She is very sweet, very smart, and oh so talented. Congrats, Becca! And thank you for inviting me onto your team!

Sunday, August 16, 2009

I'm 40 today!

I've never really been bothered by birthdays or aging, but I've got to admit, this one is making me a bit contemplative. This morning I was blessed to log on and read tons of birthday messages on Facebook and my various message boards. My mom sent me three e-cards and wrapped all of my pressies (she is the most wonderful gift wrapper, each present looks exquisite, and birthdays have always been a big deal in my family). My dad and his wife flew in from Ohio to celebrate. It's been a couple of years since we've gotten to see each other and we are having a wonderful visit. My husband took the little ones at lunch, during his extremely busy work day, so that I could have lunch with Jenny, Dad, and Dotttie. All in all, a wonderful start to this new decade of life.

But I find myself very blue today. I didn't sleep well which exacerbates my fibro symptoms and feeling overwhelmed, and the little ones are being a bit of handful today. One of the first things I read today was a CarePage update from a mom who lost her 4-year old daughter to cancer last year. She has also turned 40 recently and she is one of those amazingly optimistic and positive forces of nature. I read her long update about feeling 40 and fabulous and finding joy when and where you can without guilt. Here she is, having lost her daughter, and she is by far a healthier emotional person than me. Each day for me feels like the last, a Groundhog Day if you will. I vowed not to indulge in a pity party today, but it is what it is. This is a hard life.

I scrapped my very first page about myself last night in honor of turning 40. I examined my thoughts on this and really thought about who I am. I am defined almost exclusively by other people: wife, mother, daughter, friend... and by my roles: caretaker, nurse, doctor, researcher, advocate, volunteer, cook, etc. Just like every other mother in America, except for the special needs parenting part. I have a found a small niche just for me with digital designing and I love it. I'm thinking of taking a photography course in the spring. I need to start focusing on myself more but it's very hard. Whenever I see a picture of myself, I immediately pick out all the flaws. I'm overweight, out of shape, broken, and sick. I'm also strong, kind, gracious, and generous. Why does that negative voice persevere more than the positive? I used to be like this other mom whose writing moved me so much this morning. I used to be positive and sunny. Now I feel defeated and tired. What happened to me?

As I reflect about turning 40, I also imagine the future while thinking about how I got here. So much is unknown, I don't have a roadmap for parenting Anna or what her adult life will look like. It may be that my life remains intertwined with hers long past typical children and I need to make my own space now. She needs it too, she is very dependent on me. I will seek help with this. I will exercise more and eat better. I will seek more laughter and dwell less on negative thoughts. I will accept myself. I will accept Anna. (And I want to take a moment to thank you all for the wonderful words of suppport on my last post.) I will not be broken and sick, I will be healthy and vital. I will be happy when I can and sad when I need to be; I will be present in this moment and twine together the past and future. I will honor my husband and my mother and my oldest daughter for their incredible day-to-day support and unconditional love. I will reach out more to friends and also take care of myself. I will find pieces of me that are waiting to be found and I will enjoy that process. Here's a toast to the next five years, they will be better.... I will be better.

Thursday, August 13, 2009

Thoughtful Thursday: "retard"

Sticks and stones may break my bones
But words will never hurt me.

Is that true? Some words can hurt. A word is a word; how we interpret it ascribes its meaning. The tone of voice, an inflection, body language, and history all play into how a word is taken. I wish I could rise above hurtful words and recognize they are said in ignorance, laziness, or anger but it’s hard to take the high road when it involves one of your own children.

I have a mentally retarded daughter. Anna is not stupid. She is aware that she is different and it frustrates her that she cannot do the same things as others in such an easy, intuitive way. She has to work hard to meet milestones and she does work very, very hard! She also lives with autism and epilepsy… she copes with many challenges every minute of every day and yet she find joy and brings us joy by just being alive.

As I watch my daughter struggle and triumph with tasks such as reading and addition, hearing the word “retard” used in any form makes me flinch. It diminishes her hard work and her accomplishments. She does not have less value as a human being because her brain processes information differently than mine; nor does anyone with this label. The MR label is a way to get services to help her academically. Because of this label, she can receive instruction in reading, writing, and math in a 1:1 setting within her school district. It’s amazing to see the differences in black and white when she is in a resource setting versus a mainstream setting; she is not able to learn in a typical classroom. I am proud of her and I celebrate when she masters something because I know she worked very hard for that achievement. She has gifts and challenges, like every typical child.

There has been a movement to ban the “r” word… retard. It’s rarely used in an accurate, contextual way… more often it’s used to make fun of something or someone that is stupid or slow, to demean someone, or sometimes in a self-effacing way. I have friends who say, “I’m such a ’tard.” Most of the time, the word used in this manner does not intend to offend, it’s careless and thoughtless, but not malicious.

Quite frankly, I’m a little on the fence about banning the word. The “n” word is not a socially acceptable term yet when African-American rappers use it in their music, you don’t see picket signs around record stores or music stations. So where do we draw the line? Is the word “retard” something that should be socially shunned? I say absolutely yes. Words can hurt. But I don’t know that banning the word would accomplish a goal of inclusion… in fact, I think it would bring about more divisiveness. I wish I could rise above the ugliness of its connotations and not let it bother me, but I can’t. I’m forced to get in its face and take a stand. As more and more children with special needs are identified and integrated, we must embrace them, include them, and teach our children acceptance. It starts with us as parents.

A couple of years ago, my oldest daughter was taking driver’s ed. At the introduction of the car crash videos, the instructors said something like, “Yeah, you better be careful or you’ll end up like the retards on this video.” Jenny stood up and talked about Anna; she said that she doesn’t like that term and prefers cognitively challenged. You know what happened? She got laughed at. Someone even said, “Are you serious?” with a derisive tone and threw a pencil at her. I lodged a formal complaint against the teacher and fortunately the director of the agency was very supportive because has a niece with special needs. But I was dismayed by Jenny’s peers’ reactions and it made me scared for Anna. I was also very, very proud of my Jenny. I can’t imagine the courage that took, but she was undeterred by fear… she was driven by anger.

If someone uses the “r” word in my presence, I think about my little girl and decide to take a stand... I think about Jenny’s bravery, I think about being hurt by ugly words myself over the years, I think about Anna laughing with pure joy over something silly, I think about all of the amazing kids I’ve met on this journey, and I take a deep breath saying something as simple as, “Using the word ‘retard’ makes me uncomfortable, would you mind rephrasing that?” Sometimes I’ll go into more detail, sometimes I won’t. I’ve never gotten a negative response.

I’m not asking that you do the same, but maybe just think about how words have hurt you in the past and see if taking this particular word out of your vocabulary would be something easy to do. Pass this post along to family members who use the word if it’s too difficult to talk to them. Talk to your children.

We can each make a commitment to change, as individuals. It’s start with us… today… right now. Thank you for reading this and thinking about my little girl.

Wednesday, August 5, 2009

Rough day

I've lost count of the meltdowns. Dominic is having one of those days where he hurts himself over and over which makes Anna upset. She's handled most of the boo-boos pretty well but one pushed her over the edge and she ended up biting me and pulling my hair (she gets physically aggressive when she's scared). I'm so so so tired.

I think she is going to have a seizure today. She's so off, her brain is irritable.

Pain, presence, and perspective

I had a rough night last night, Anna was up for a bit around midnight. With school starting in less than three weeks, anxiety is setting in and she is beginning to perseverate about not wanting to go back. It breaks my heart to see her so upset and scared, I wish she didn't have to go. It's hard to believe I'll have one starting as a senior and one starting kindergarten.

Dealing with chronic pain takes a lot of energy. Sleep is such a key component to managing pain levels and poor sleep definitely affects my ability to cope, to be present, to be patient; and poor sleep affects Anna's ability to cope with everyday life also. She is grumpy this morning and I'm hurting and foggy. I have fibromyalgia and whatever connective tissue disease I have is degenerating. It depresses me sometimes but then I remind myself that it could be worse. It's all about perspective.

I've been consciously working on being present this summer, truly in the moment. It's incredibly hard to do! Anna is one her second meltdown this morning and I'm only on my second cup of coffee. It's going to be a very long day. I'm going to try to take a deep breath, let go, be present and mindful. This moment will never happen again.

Saturday, August 1, 2009

July 2009 Siggies Slideshow

Here are my siggies for the month of July. Thanks to the best requesters in the whole world! To get your own siggy, please visit CrumbSnatchers!

Thanks for looking!

Safari! by AnnaBV Designs

Anna has a new kit out today at ScrapMatters called Safari! It's great for scrapping all of those zoo pictures and adventure photos.

Here's my layout... I took all of these photos on a drive-through safari ranch that is within a couple of hours from our home. It was an awesome experience to have a zebra come through the window and let us pet him!

Thanks for looking!
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