Klonopin helping

A quick update to say that I think the Klonopin is helping Anna a little. She is not perseverating as much and she has not attempted to leave the house this weekend without permission. She only tried to leave school a couple of times Thursday and Friday instead of constantly. We still have a long way to go to get our little girl back, but it's a start.

Thanks for all of your support.

Mayan Families Needs Your Help

Amigos of Mayan Families,

Many of you may be aware that Guatemala is facing a huge crisis. The President of Guatemala has called it "a calamity". The drought has caused severe food shortages and the cost of basic food items continues to rise daily. According to Unicef almost half of Guatemala’s children are chronically malnourished—it has the sixth worst record in the world. In parts of rural Guatemala, where the population is overwhelmingly people of Mayan descent, child malnutrition reaches 80%. A diet of little more than tortillas does permanent damage. This is the only diet that many families have right now.

In Guatemala, which has some of the worst levels of chronic malnutrition, children have already started dying. In rural areas, thousands of families can no longer afford to eat. Malnutrition rates are rising among the very young, and the elderly. We have many mothers who are not eating, just surviving on a few tortillas a day so that they can give the food to their children. Children who suffer from chronic malnutrition are not in immediate danger of starvation, but they will face stunted growth and a diminished mental capacity. The children don’t look underweight — they just look tiny. Some have light hair, others have patches of hair missing, some are even bloated. Families that before could afford to feed their children, are now struggling but the families that were already living without enough to eat are now facing daily hunger and the children are quickly becoming malnourished and sick. Daily, we have families coming to our door who have nothing to eat. The worst affected are single mothers whose wages were barely able to keep the family together before this crisis. Now, they just do not have enough to feed their children even the very basics.

Through your help, Mayan Families currently feeds over 110 children everyday at our three pre-schools. These are children that have been identified as malnourished or are in danger of becoming malnourished. We have started a feeding program for the Elderly this week. Many of the elderly people do not have enough to eat and are becoming very malnourished and weak. We need your help to be able to continue to feed these people and the many more who need help. This is a crisis situation and while we believe in long term solutions...right now... people who are hungry cannot wait for crops that will grow during a severe drought or chickens that will lay eggs. They need help today. The biggest need and challenge facing the indigenous people of Guatemala this year and in the coming year will be the struggle to have enough to eat. The United Nations children's fund, UNICEF, reports that Guatemala has the worst malnutrition problem in Latin America, even higher than the 35.2 percent average in Africa!

October 1st is Children's Day in Guatemala. We traditionally celebrated this with a pinata and cake. This year, in the hopes of giving children food, we are asking for a small donation of $10 or more to be able to provide a child with a bag of corn and several pounds of beans to take home. Beans are sometimes the only protein the children will receive. We need food for general distribution... this is for families that are in desperate situations, many of these will be single mothers.

A 100 lb bag of corn is $35US. This will supply a family of five with tortillas for two weeks.
A 100lb bag of black beans is $90 US.
A carton of 30 eggs is $5US.
A basket of food with a cooked chicken is $35 US.

To help a family get through this crisis, please consider donating today. Any donation of any size, to help feed a child and their Family will be greatly, greatly appreciated. We don't want to turn people away that we know can be helped. With your generous donation, we can help those who are in terrible situations and give them hope. If you would like to nominate your sponsored student to receive your gift of food, we would be very happy to do that.

TO DONATE: Please click on the link to visit our website and donate online at
Donate Online
and put it in the General Donation area, "Where most needed". You may also choose to send your donation in the form of a check. Please make it payable to Mayan Families and send to:
Mayan Families
P.O. Box 52
Claremont, N.C. 28610

We are asking you to join in our efforts to help the Guatemalan people by giving a tax-deductible donation. We hope that you will be able to help us with a donation of $25, $50 or more, this will feed a lot of children. However, any donation no matter how small is always welcomed and appreciated. We make every dollar count! We are asking that all contributions - personal, employee and corporate - be made as soon as possible.

You can make a difference right now, today! Thank you for your support.

Best wishes,
Sharon Smart-Poage
MAYAN FAMILIES
Tel: 619-550-2608
ABOUT US: Mayan Families is a small non-profit group working in the Highlands of Guatemala. We are a registered 501(c) (3) Non Profit Charity. Your donation is tax deductible.

Thank you once again for supporting Mayan Families!

From Holly: Our family has made a small donation so that Irma (our sponsored student, #778) and her sister will have food to celebrate Children's Day. Please consider donating just $10, it can make such a big difference! Thank you!!!

Talked to Anna's class and her neuro

I am overwhelmed.

I talked with Anna's class this morning while she was out of the room. Her teacher offered me a chance to do it or the school counselor could've come in, but we thought I might offer a more personal touch. I was really nervous and not quite sure which approach I should take. My exceptional women friends that meet once a year for a retreat (moms I met on iVillage when Anna was a baby and they all have children with special needs) made some great suggestions about how to talk to the kids. (Thank you so much, ladies! You have no idea how much you helped and how I felt your support while I was there today.) I made it very Anna-centered instead of talking about just autism and how Anna is different.

I discussed autism, the five senses, how she was born with it, how it affects her. I talked about the things that Anna loves (SpongeBob, AFV, sports, frogs, baby dolls), things that scare her, things that are easy for her, and things that are hard for her. I focused on how she is the same as them. I talked about how Anna (with more emphasis on Anna's brain) reacts to stress and fear. The kids had TONS of questions. I was there for 45 minutes. I ended the session with asking them to share some things they really like about her and how they could be a good friend to her. I think it went pretty well. They are having a hard time understanding why Anna wants to leave class and come home, why she asks the same things over and over, why she pushes/shoves/hits, why she wants a wheelchair so bad, and why she refuses to work.

I told them we are having a hard time understanding too.

Things have really changed this last week. It's tough to realize when you are in crisis mode with your child, how much it consumes you. All of a sudden, your reality is completely different (again) and when you stop to take a breath, you realize that this is really hard and it really sucks. I can't imagine what it's like to be in Anna's head right now. I can't imagine that she can find any kind of equilibrium. Just when I think I have a handle on how to be her mom, something changes, and I really question my ability to parent her well.

There are days when it feels like I'm juggling so much, I don't know if I can keep all these balls in the air. Between Dominic's challenges (setting up OT appointments and arranging changes in his classroom), Jenny's senior year stuff (I think I'm supposed to meet with her counselor Friday to talk about college planning and applications?), my appointments (did I tell you I found a lump in my breast? I'm seeing my GP tomorrow), Charlie the puppy (he starts intermediate obedience class Saturday), being the SEPAC representative for our campus (I'm supposed to volunteer Saturday for a parent summit and be in a mock ARD), and Anna (the list is too long), and all the regular crap (I bought a laptop three weeks ago that I can't get calibrated properly and have spent hours and hours on the phone with customer service, now I have to prepare to send it in for repair)... I'm so overwhelmed. I know what I need to do... take one day at a time, one task at a time... but actually doing this without this internal churning in my head and heart... well, I'm a little lost in it all right now.

Writing does help me. Sharing helps me. Making siggies and such really helps me. So I thought I would put this all out there and maybe get it out of my head. Sorry for the vomit of overwhelms... I appreciate you reading all of that, lol!

I just don't know how to help her or what to do, and that is just so very sad for me as a mom. I talked with Anna's neuro yesterday and tonight we are starting her on Klonopin for anxiety. She historically hasn't reacted well to most medicines so we are nervous. I'm keeping my fingers crossed that it will help her and that she can start to manage and cope again. As I was leaving the school, one of the teachers said that she was worried about Anna... yesterday she was in Anna's class (the administration now has Anna supervised 100% of the time since she is such a flight risk right now) and said that in a split second of distraction, Anna was out the door. I just wish I knew what's going on in that cute, little confused brain of hers.

Occupational therapy evaluation and an update on Anna

Dominic has his OT evaluation this morning and what a suprise! It looks like he has proprioceptive issues caused by sensory integration dysfunction. I would never have guessed. Anna has very intense sensory issues but they are the opposite of what Dominic has. Dominic needs to move his body constantly to know where his body is in space. This could be the cause of his impulsivity, hyperactivity, and even poor fine motor skills. It takes practice to learn how to color and write and he needs to move too much to sit still. The OT has recommended therapy twice a week initially so we are going to start that as soon as possible. There are many things his teacher can do to help him prepare for desk work; I'm excited to see what changes will happen once we implement some new strategies.

Anna is continuing to struggle at school this week. Last week, Anna left her classroom without permission three times on Tuesday once making it to the library before being intercepted and once she picked up another student and actually left the building to go to a portable at the back of the school property to see her resource teacher. We thought at the time that was because the 2nd grade class had a walking field trip that morning and the change in routine disrupted her. Well, she has continued to leave her class several more times and she has gotten physically aggressive with her teachers and peers. Anna is refusing to do any work, insisting that she wants mommy. She wants to call me and continually is asking for me. Her poor teacher looked so defeated yesterday.

Last night, I took Dominic out to dinner as a reward for really turning things around at school. He is no longer chewing on his shirts and he is following the rules and not getting in trouble. I also wanted Anna to have a break from me since she is getting so incredibly dependent. My mom kept both kids for a sleepover on Saturday and Anna actually cried when I left, kind of like separation anxiety. Curtis had to take some work calls while Dominic and I were gone and when he was finished, he realized that Anna had disappeared. He discovered his car door open and the car running! Anna was down the street. When he asked her why his car was running, Anna said that she was going to try to find me. I nearly threw up when I heard this. Anna was in her room crying when I got home since daddy sent her there for the rest of the night.

I've emailed her neuro just now to talk about what might be going on. We have several theories...
~ She is pre-ictal and might have a seizure soon.
~ She is spoiled and is manipulating everyone to get what she wants.. or is just simply being attention-seeking.
~ She is dealing with anxiety and fear, and that is driving her perseveration with seeing mommy and wanting a wheelchair. Having the routine change last week at school crossed her threshold for coping.
~ It's a combination of these issues.

We think the third scenario is most likely. It takes a lot of her coping skills to deal with school and such a large classroom of children. If we operate under the assumption that she is anxious, then we can intervene in several behavioral ways. First, lots of reassurance. Break the day down into small chunks. The teacher can say, "I know you want to see mommy and you will see her at 2:45. First we need to do ___, then we will do ___." If she begins acting badly, ask her, "Anna, are you scared? Do you need a break? When I see you make a better choice, you can have a break. Can you try that in a different way? Can you ask me in a different way?" etc. I think the wheelchair issue is driven by a 2-year fear/fascination of a little girl who is in FLS... this has been a long-standing issue for Anna.

We are obviously pretty freaked out about her safety right now. Thank goodness she didn't figure out how to put the car into gear... I shudder to think what could have happened. I think she is capable and determined enough to leave school to try to walk home to find me. She will really need intense supervision for the short-term until we can figure out what is really going on with her. The car keys will be kept hidden. I'm worried that she is not capable of learning right now and is disrupting her classroom too much. We need to find a good balance between expectations and reality. This could be a big cry for help; she is a people-pleaser by nature and all the people around her are not happy with her right now. I think going through the day feeling overwhelmed and anxious could cause all of these symptoms. It may be time to try an anti-anxiety med. We're not sure what to do next. Hopefully her neuro will have some advice.

A funny story about Anna

So Anna has had an off week. She's been difficult at school and a little tough at home. On Wednesday, Anna left her classroom three times. The first time she wandered around in the hallway for awhile before coming back in. The second time she made it to the library and the librarian brought her back. The third time, Anna decided that since they had a field trip that morning (which is probably why she was so off that day... the change in routine) and she hadn't seen her resource teacher, she would just leave and go see her by herself. On the way, Anna picked up another student, actually left the school building, and went out to the back portable where her resource teacher is housed. She was just determined to do her own thing and no one was stopping her! This is important to understand her state of mind when reading the next little anecdote.

All week, Anna has been perseverating about wanting a wheelchair, I mean like it's completely taken over her brain. We've talked about how she can't have a wheelchair because she can walk and how they are only for people who need them. She just can't let it go. It's the first thing she talks about in the morning, the first thing after school, the last thing before bed, and it even wakes her up in the middle of the night. I don't understand why her brain does this to her. Yesterday was a particularly bad day at school that included her shoving and hitting other students. When she got home, I only talked about {not} getting a wheelchair once with Anna; then I told her I wouldn't discuss it anymore. She got so worked up about it that she had a full-out meltdown in her room for 20 minutes. Then she got calmed down and said, "Fine! I just go myself. I go to the doctor's office and get a wheelchair!" I asked her how was she going to get there? She said, "I will drive the car!" She then stomped away, returning about 5 minutes later with my driver's license and cash in a ziploc bag saying, "Mommy, I can't find your keys." OY VAY!!! She's only 8 years old! I really think that if she had found my keys and I wasn't paying attention, she would have attempted to drive the car and you all would be reading about us in the newspaper! She is too much. We all had a good laugh and were impressed with her determination and logic. Thank goodness I still had my car keys in my pocket!

Met with school staff about Dominic

Whew, it's been such a busy week. I met with the Assistant Principal and Dominic's teacher on Monday to talk about the test results from the child psychologist and strategize on how to best help him be successful in kindergarten. We were prepared for it to be a 504 meeting if it was necessary. To be quite frank, I really didn't know much about the 504 plan... IEPs are what I'm accustomed to.

It was a very amicable meeting. Dominic's teacher had lots of positive things to say about him, especially in how much he's improved in just the first few weeks. His behavior is actually pretty good and the teacher was surprised to hear how much he struggled at preschool and at home. She said that he definitely needs more attention and redirection, but overall follows the rules, is well-mannered, and respectful of her and his peers. He seems to have little control over his body, constantly moving, swinging his arms around, fidgeting, wallering in the floor during circle time, etc., so his peers are fearful that he is going to bump them or hit them. The teacher is going to make a large taped area on the carpet for him so that he has more room when sitting. She lets him get up as often as he needs to and allows him to stand during seated work. We're going to implement the OT recommendations after he starts therapy (his evaluation is next Tuesday) at school and they are going to start him in a social skills group at school. They are also going to consult with the TAG (talented and gifted) team on how to help him not be bored during kindergarten; TAG doesn't officially started until first grade.

Overall, I'm very pleased that they are so willing to help him, especially without a formal plan in place. We can always revisit the 504 in the future if these changes aren't enough to make a difference.

My Charming Boy by Becca

Becca has a new kit out today called My Charming Boy available at Enchanted Studio Scraps. Isn't it darling?


My layout:


Thanks for looking!

August 2009 Siggies Slideshow

Thank you for your input about seeing my siggies. Here's what I made in August!

Thanks for looking!

What would you like?

I am falling a little behind on my regularly scheduled posts. At the beginning of each month, I like to show the previous month's siggies in a slideshow. It takes a while to wait for them all to display in that format however. Since I have some family who reads this blog, it's a nice way to show them what I've been up to... I'm not sure anyone else cares, lol.

So my questions are these:
1. Do you want to see my siggies each month?
2. If yes, would you prefer a slideshow or have them displayed in the post?

Thanks for taking the time to answer!!!

Make Me Smile by AnnaBV Designs

Oops! I totally forgot to post Anna's new kit on Friday, sorry about that! Anna has a new kit called "Make Me Smile" available at ScrapMatters. It's so adorable with lots of fun elements and awesome polka dot patterns!

Make Me Smile


My layout


Thanks for looking!

Dominic's child psych test results

Wellll.... isn't this interesting??? It looks like Dominic may NOT have ADHD after all! The pyschologist did IQ and achievement testing and our little pickle is smart! His overall IQ tested at 124 and his achievement functioning tested at 132.

Here's the really interesting part about the ADHD. On the IQ test, three subtests indicate excellent performance with attention (working memory), concentration (cognitive efficiency), and delayed recall (scoring 132, 126, and 138 respectively). Because of these scores, it is highly unlikely Dominic has ADHD!

There are three types of ADHD:
1. Inattentive
2. Hyperactive/Implusive
3. Combined Type

Previously, Dominic was diagnosed as Type 3, Combined Type ADHD. Now Types 1 and 3 can be ruled out. There may still be a possibility that he is Type 2, but the doc recommends making some environmental changes first to see if the hyper and impulsive behaviors stem from being under-challenged. If the changes do not make a difference with these behaviors, then we'll feel more confident that Dominic has an organic problem with impulsivity and hyperactivity. He's testing at the 2nd grade level for reading and math. Writing in on grade level (kinder) and is a source of great frustration to him. Little did I know that he has fine motor delays as well as trouble with some oral language; and the doc tenatively diagnosed him with Developmental Coordination Disorder and Phonological Disorder. She recommends occupational therapy and a home-based writing program to help him with the writing delays ("his impairments in fine motor cause him to find seated and written work laborious and almost unbearable"). He could also benefit from some speech therapy to help with some pronunciation issues he's having (though I think this is a mild issue since he is completely understandable). Emotionally, Dominic does have some trouble with social skills and being oppositional. She recommended a social skills group and environmental changes. Again, if these changes don't make a difference in his behavior, then we might be dealing with something more substantial like Oppositional Defiant Disorder (I hope not).

So we have a long list of recommendations:
1. Private occupational therapy for fine motor delays and a sensory dysfunction evaluation.
2. Speech therapy evalation for phonological processing problems.
3. Challenging academic material, gifted and talented program.
4. 504 plan for fine motor coordination and behavioral challenges.
5. Modifications to curriculum for fine motor issues (use a pencil grip, assessments not based on writing, etc.).
6. School-based social skills group.
7. Home-based instruction writing program.
8. Individual and family counseling.

Now I need to set up private evaluations for OT and ST. I need to talk with his teacher, principal, and school counselor to create a 504 plan and see what options we have academically. Our school does not offer a TAG (talented and gifted) program for kindergarten... it starts in first grade. I'm not sure how we will be able to challenge him now. If we can't find something to interest him, he will be so bored that his behavior problems will intensify. He's only had 1 good day at school so far.

Egad, am I glad I listened to Curtis about not continuing the ADHD medication! No wonder Dominic hated it. When he said, "Mommy, it makes me slow," he really meant it. I am so glad we went ahead with the psychological testing! I am feeling relieved that Dominic may not have ADHD (for his sake... I think having a brain that can't stop you before you start would be quite frustrating!) but I also realize that his issues will continue to be challenging for him. Sometimes it's easy to forget that he's just a 5-year old boy!

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.

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!

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!

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.

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!

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!

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.

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.