Friday, January 30, 2009
If I'm not "here" as much as I'd like to be, its because tax season is upon me. I do taxes from home for family and friends. I don't know how I'm going to find the time (most of my time is spent chasing Goldie away from the garbage can), but we need the moolah, so ....
Tuesday, January 27, 2009
My MIL is most put out by this. I recently gave her 6 pages of articles on why artificial sweetners are evil. This was my last resort after asking her repeatedly not to feed them to my kids or buy us food with
While the FDA is researching the evils of stevia, mercury is the lastest contaminant they have allowed to leech into our food system. I received this link from a special needs homeschool email list.
I do my best around here to avoid HFCS, but I don't always have time to cook from scratch or the money for alternatives. Example: Heinz ketchup w/ HFCS is about $2 while Annie's Naturals w/o is $4 at my grocery store. The nearest Whole Foods is an hour away.
The girls and I went through the cupboards to see what we had with HFCS. Just a box of Rice Krispies and some Dole canned grapefruit. Mini Me asked about the iced tea she drinks at school and I told her it would be better for to switch to water. She, too, has a milk allergy. Does anyone know if Silk makes individual soy milk cartons?
Monday, January 26, 2009
I was tagged for this on Facebook, so here it is. I changed some just so I don't seem too lazy.
1. I married my husband exactly one week after my 21st birthday. We’ve been married 12 years now.
2. My favorite color to wear is brown, I liked it way before it was cool. I’m stocking up on brown shirts now.
3. I’m addicted to Café Vienna, one of the General Food International coffees
4. I had post-partum depression after Goldie was born. I finally got help when she was 8 months old. I think it had more to do with losing 3 family members than it did with the DS.
5. In the last 10 years there have only been two months that I wasn’t pregnant or breastfeeding.
6. During those 2 months I got completely trashed at a wedding and am still embarrassed by my behavior.
7. When we decided to have a third child, we were thinking with our hearts not our heads. It’s a good thing, since my heart does most of the work.
8. I spent 6 months in the United States Marine Corps, until I fractured my pelvic bone.
9. I’ve stopped trying to have the perfect marriage. We do what works for us and I’m happy with that.
10. I was late for church this morning. Even worse, I only went because Swatcho made me. Then, she complained through the entire service while Goldie kept trying to escape.
11. Half of my family lives in Vermont, my mom is from there. I also have family in Mississippi and Texas that I have never met.
12. I enjoy mowing the grass because it’s a sure fire way to get time to myself.
13. I shot my neighbor’s dog in self-defense. No it didn’t die. Yes, I called the Dog Officer, 6 times.
14. I’ve been thinking about getting another tattoo.
15. I never got a college degree. Sometimes that bothers me, but that also means its still an option.
16. Ever since my Jr. High music teacher had us watch My Fair Lady, I’ve been a fan of musicals. My husband is not. Thank goodness I have girls.
17. I love hanging clothes outside to dry.
18. I worked for as a mail carrier between Swatcho and Goldie. Sometimes, when it’s nice out, I miss delivering mail. It was so nice to drive around by myself listening to the radio.
19. If you haven’t figured it out yet, I like to be alone. I’m an introvert; my husband thinks I’m
a bitch antisocial. It just depends on the situation.
20. I get migraines from red wine and aspartame.
21. I love cinnamon and dark chocolate.
22. I’m an information junkie. I question everything and research like crazy before making decisions.
23. All the stuff I need to know to care for a child with special needs overwhelms me. Sometimes, I think maybe ignorance really is bliss.
24. I always knew I would have a child with special needs. When I found out Goldie had Down syndrome, in a strange way, it felt right. Everything in my life had led to that moment and prepared me to be her mother.
25. I suck at putting my kids to bed. Goldie is sleeping in the recliner right now, and the other two slept in the living room all weekend.
Me on my 30th birthday with Swatcho and her friend.
Friday, January 23, 2009
Thursday, January 22, 2009
Mini Me celebrated her 8th birthday just days before Goldie was born. We've talked about how babies are made and she had a basic understanding of genes. Like she has my brown eyes and her sister has her dad's blue eyes. I was sorting throught a pile of dirty dishes while she sat across from me at the bar. She asked me if her children would have Down syndrome. I immediately began to reassure her. "No honey, they probably won't. Goldie's Down syndrome is not hereditary. It just happens some times. Only 1 in 800 babies has it."
Her reply: "Well, I can always adopt a baby with Down syndrome, right?"
At that moment I felt like she was raising me.
I just have to add, my SIL took this picture. It is such a fluke. Goldie was 8 wks old and wasn't able to maintain eye contact or focus on anything. (She has nystagmus) So, this is the only picture from that time where she is actually looking at the camera.
Tuesday, January 20, 2009
Sunday, January 18, 2009
We had a cozy night in, watching The Game. Mini Me and Swatcho are old enough to remember when the Steelers won the Super Bowl in '06, so they were all about the black and gold.
Hank picked up a Pittsburgh paper for me on his way home from work today. The first thing I noticed was that the article about the Steelers beat out the piece about the President Elect for space on the front page. I mean, really, he's already won.
The article (titled Great Expectations) discussed how Steeler's fans just expect their team to go to the Super Bowl every season. "In Pittsburgh, the Super Bowl is the standard. Nothing else will do." This got me thinking about Goldie and our expectations for her. I expect her to graduate from high school, pursue some sort of secondary education, get a job, fall in love, and live on her own. This is what I expect of all my children. If they choose to take a different path, that's ok. As long as it is their choice and not something they've been denied. Will I read this 20 years from now and think I was being naive. Maybe, but it won't be the first time.
Yup, she climbed up there all by herself. She is sooo ready to turn 2 in a couple months. (Edit: This is a supervised re-enactment of the actual first time she climbed on the table. Swatcho took this photo and I cropped myself out. All small chairs have since been removed and placed in a secure area. I do not enjoy trips to the E.R.)
I would love to say this pic was taken in the playroom, but I can't. Its our living room. I took the Christmas tree down this week and brought out the play kitchen.
Goldie's favorite way to cook food? Just nuke it! I didn't realize I used the microwave so much.
She can barely reach it, but the Wii board gives her just the boost she needs.
Friday, January 16, 2009
Tuesday we drove into Pittsburgh to meet with Sonia Sumar. Goldie and I were there for little over an hour, but it was an hour that will stay with me the rest of my life.
First, I have to tell you, that woman radiates love. pure love.
I brought Goldie early so she could get acclimated to her new surroundings. We were allowed to sit in the class and watch as Sonia worked with a little boy. We weren't told his diagnosis, but if I had to venture a guess I would say Cerebal Palsy. He looked to be about 5 and was one of the most articulate, intelligent children I have ever met. Sonia guided him through the yoga poses helping him relax his muscles with gentle touch, music and chanting. The two of them talked and chanted together the entire time. I was moved to tears at one point by the connection between the two of them. I tend to be a little emotional, but when I looked around I wasn't the only one with wet eyes in the room.
So, then it was Goldie's turn. This is where Goldie did her part to dispel the myth that people with Ds are happy all the time. She never had a complete crying break down, she just kept whimpering. Sonia respected this and guided me in doing some of the poses with Goldie. I learned she is capable of more than I thought. I also realize now that Yoga is about more than just poses, balance and strength. Its about being at peace with your body and who you are. Being happy in your skin. We could all use that. (I wonder if they have a class for mothers with multiple children)
Then there are the tangible benefits of yoga. Strength and balance. I really think learning the different chants would "count" as speech. I know Sonia used yoga as a form of vision therapy with her daughter. And how about just doing it for fun? I know the little boy I saw was having a good time.
The studio owner took pics for me, I'll post them after she sends them to me. Now, how to convince Hank that this is worth an hours drive plus the costs of the class?
Monday, January 12, 2009
We live in a smallish town. Most of the people on our road grew up here and built/bought homes near their parents. I love the sense of community we have. When Goldie was born the outpouring of support was unbelievable. Neighbors brought food, watched my older girls, folded my laundry and scrubbed my stove. They are like our extended family. During the summer we visit often and its easy to keep up on the latest news.
But, its winter so the news of my neighbor's new baby took a little longer to get to us. First, I asked around to find out if she had her baby. Then, I heard he had a hole in his heart and was still in the hospital. Finally, my husband tells me he has something on one of his chromosomes. I couldn't take it any longer, I stalked the new mama down at her parents to get the details.
Baby C was born November 11th, so he's 2 months old now. He has translocation Down syndrome. Please pray for him, he is having heart surgery tomorrow. They had hoped to wait until he was 4 months old, but he needs his heart repaired sooner. I never had to deal with this, so I don't know how much help I was to her. We also talked about EI, SSI, and medicaid.
I just can't believe Goldie will grow up with another child who has Ds living 1/4 mile away from us. She is only 20 months older than him. He also has an older brother and sister close in age to my girls.
Now, any ideas for a gift? I know they could use a gas card for traveling to the hospital or maybe they would just like some regular baby stuff. He is their third and their kids are spaced apart like mine, so some new items might be welcome. I haven't read Gifts, but I know it comes recommended. Hmmm.
Sunday, January 11, 2009
Stacy - My best mama friend, she moved away a couple years ago, but her name was the first thing that came to mind
Snow - we have lots of it now, 8 inches yesterday
Sled riding - great exercise
Soup - homemade by my Mom
Signing Time - Goldie signs butterfly now, so sweet
Sling - we love our pink Maya wrap
Sears - Attachment Parenting guru Bill Sears and his wife Martha; they also have a son with Down syndrome.
Stripes - on my kids or me
If you want to play, leave a comment with your favorite S thing and I'll give you a letter.
Friday, January 9, 2009
If you haven't hear of Yoga for the Special child there is a book and a website. I thought about becoming certified myself,but the certification course lasts 7 days and that just wasn't doable for our family right now. Nevermind my lack of yoga experience and cash to pay for the course.
Why yoga? Early intervention provides PT until Goldie is 3. After that services are provided through our school system. I've been looking into this and attended an informal Q&A on the transition process. Goldie will not receive individual PT, it will most likely be 15-30 minute sessions and they will be education based. We'd like Goldie to have strength, agility, and stamina. Doing yoga can help with all of these. Yoga is an activity she can enjoy for a lifetime, long after her PT eligibility has run out.
We have a family yoga dvd that I do with the girls. It is inspiring to watch her imitate the different asanas. I've also been looking at a dvd called Happy Me Yoga. But I am most impressed by Sonia Sumar and her story. Her book isn't just about yoga, it tells the story of her daughter, Roberta, who had Down Syndrome. We've started some of the activities she teaches, but are looking for some professional advice and guidance. I'll let you know how it goes!
I upgraded our DSL and installed the new router, with a little help from NetGear. Hank replaced our good 'ol rabbit ears with a new HDTV antenna and Goldie was able to watch Sesame Street for the first time.
Goldie spent time with all 4 of her therapists this week, after a 2 week break for the holidays. Our service co-ordinator brought the paperwork yesterday to increase OT to every week and decrease PT to every other. Goldie sorted blue and yellow blocks into containers with the Vision therapist today. This is something the VT thought she was ready for and I have to say I've been surprised, again, by what Goldie can do.
I even remembered to run the dishwasher after dinner 3 days in a row! The kids love it when they don't have to wash spoons before they eat their morning oatmeal.
I thought I'd post this pic just 'cause I like it.
Thursday, January 8, 2009
So, when we picked up a recipe for Goo at Mini Me's school science fair, Swatcho was bound and determined to stir up a batch of her own. Here it is:
Want to make your own?
Step 1: In 1 large bowl mix together
2 cups glue (Elmer's)
1 1/2 cups warm water
(I added the food coloring to this step also)
Step 2: In another bowl mix together
1 1/3 cups warm water
4 teaspoons Borax powder
Step 3: Pour step 2 into step 1. Mix it around until it solidifies. Not all water will be used. It is okay to lift out and knead.
Store in an airtight container. Should last 6 weeks.
While tearing and stretching her goo we talked about the properties of liquids and solids. Another gooey activity is just cornstarch and water. It changes from a liquid to solid over and over while they
Wednesday, January 7, 2009
Its moments like these I wish I had a sister growing up. I never felt that way until I had kids. I often think how nice it would be to if I could pick up the phone and have a sister to call. I've had some friends that come close though. And my brother is the best so I'm lucky there, too. I hope my girls always stay close.
Sunday, January 4, 2009
Thoughtfully given to me by Lisa at Finnian's Journey. Thanks Lisa!
And it is just what I needed today because the New Year's Eve stomach virus staged a sneak attack last night. After 3 days of seeming fine, Goldie was up at 3 am and has been puking off and on all day. Poor girl, its really sad because she keeps signing mim mims, but I don't want to feed her right after she's thrown up. But, she is nursing now, so we'll see how it goes... and someday I'll type with two hands again.
So, out of the 5 of us I'm the only one who hasn't succumbed to the this bug. Or maybe God feels sorry for me because I've already had TWO stomach viruses since November. I don't know if Hank will be able to go to work tonight, if he does I packed him saltine crackers instead of a sandwich.
I've lost track of how many times we've been sick so far this winter. Hank actually asked "where does this sh** come from?"
Well, you know, I take the kids to Wal-Mart and let them lick the toilets.
Seriously, I hate Wal-mart. I never go there. Ok, maybe twice a year, and I always leave ticked off. They also have the dirtiest bathrooms in town.
Honestly, I don't know where the germs come from. We never go anywhere because someone is always sick. I've become the queen of hand sanitizer and hand washing, but I can't see where its done any good. I also carry a shopping cart cover that keeps Goldie from
What I really told him was that I'm sick of this and I want to move somewhere warm so we aren't cooped up inside sharing germs 1/2 the year.
Friday, January 2, 2009
She started with OT at 5 weeks and then we added PT at 6 months. Her OT worked on holding her head up and sitting.
The PT and her pediatrician gently tried to prepare for the possibility that Goldie may not walk until she was 3 because of her low tone and she would not bear any weight on her legs at all. I would see moms with their babies standing on their laps and be a little green that Goldie couldn't do that. One of things that I think really helped Goldie was infant massage. I gave her a massage every single night until she turned one. Now we try to do it every other day or so. When she was 10 months old she woke up one day and she could put weight on her legs. It was the strangest thing because it wasn't gradual. Something just seemed to click for her.
That is also the month she became mobile. It wasn't a crawl or a scoot. She would sit, lean forward on her arms, and pivot her butt to the side. Hank nicknamed her Chim Chim because he said she looked like a monkey.
Then around 13 or 14 months she started crawling. But, she crawls without putting her right knee down. She uses her foot. This drives the PT batty. If Goldie is sleeping on her stomach she will even keep her right knee in the air. She also started pulling up on furniture around this time.
During the time from 8 months on, we used to "walk" her around. I would support her weight and encourage her to make stepping motions across the room. It is supposed to help with muscle memory and is the idea behind treadmill therapy.
Well, when she started cruising at 16 months she also started trying to step sideways. At 19 months Goldie took her first steps. We helped break the pattern of side stepping by supporting her as she walks up the steps. You have to move your legs forward to go up and she thinks its great. I'm usually pulling her off the steps. Another thing this has helped with is strengthening her left leg. When she began walking she would always lead with her right leg and the left would catch up, but never pass the right. I don't notice her doing this as much.
Now, at 21 months she is able to stand up on her own and stay standing. Her PT said some kids are so motivated to walk that they don't bother learning to stand until later. She is also stooping down to pick up toys while keeping her balance.
I do worry about her left leg being weaker than her right. I notice it in her left arm and in her left field of vision, too. (Vision is a post for another day) I wonder if this will go away or if her right side will always be dominant.
Thursday, January 1, 2009
A couple days after Christmas it was above freezing so the big girls wanted to roller blade on the driveway. Mini Me insisted that Goldie needed to come out and watch them. She was right. Goldie joined right in walking around the driveway.
Here she is zooming right by me.
The Frankenstein Walk. Don't mind the pile of dead stuff. That is where the tree was that fell on our garage this fall.
Goldie goes to playgroup once a month and enjoys all the cars and trucks there. So, my dad got her this big truck to push around. Hank corrected me, it is actually a uke. Anyway, pushing it outside will give her practice walking over different types of surfaces. And she can fill it up with goodies she finds along the way. Not to mention we need a change from shopping carts and baby doll strollers. Her sisters like to put her in the uke and push her back and forth.
Goldie was chowing on the popcorn.
Now I noticed Swatcho seemed a little subdued. Which is not at all like her. So I asked her, like 6 times or so, how she was feeling. So imagine my surprise when she pukes all over the carpet, couch, and even a little on our guest. This is another example of mother's intuition. I should know better than to ignore my gut feeling.
So, Hank slept downstairs with her and Goldie and I sacked out in the big bed. Until 3:15 when Goldie started puking. I was already up because she was squirmy so I rushed her to the bathroom. I still had to change my sheets, but its better than finding a toddler covered in puke and having to give her a bath in the middle of the night. I'll take the family bed over a crib any day. She bounced back very quickly and was nursing by 8 this morning.