Sadie

Reminds me when she first got baby teeth

2012-02-07T19:02:00.001-05:00

Heehee... Sadie has 3 adult front teeth and 2 adult molars and 8 baby molars left in her mouth. As strange as her teeth look now, I think they are beautiful and so much better than all the super crowded 8 teeth that were there.
I spoke to the cardiologist today and her ASD hole is still 4mm and VSD hole is a few mm. He said not large enough to repair in surgery. However he was very clear that she should have a follow up EKG and echo on her heart in 9-12 months. Should be done under sedation again too. Ugh. But good news none the less that se doesn't need surgery. Yay!!!!

"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid" ~ Albert Einstein

Sent from my iPhone

Photos to go with the last post

2012-02-06T20:16:00.001-05:00

2012-02-06T19:29:00.004-05:00

Poor baby... Happy before

Looks like she was hit with a baseball bat, minus 8 baby teeth and plenty of room for her adult teeth to come in straight. Molars where filled instead of crowned.

So swollen leaving the hospital.

"Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid" ~ Albert Einstein

Under Anesthesia

2012-02-06T10:01:00.001-05:00

Sadie had 8 baby teeth removed this morning under general anesthesia. In addition, the two 6 year molars that came in defective due to hypoplasia (missing enamel) were saved and could be filled rather than crowned. Initially only 4 baby teeth were supposed to be pulled , but her mouth was just too crowded. We are so happy with the care and attention from her dentist and also the children's hospital team has been great.
While she was under, she also had a heart echo and blood drawn for a CBC, thyroid autoimmunity baseline, and food sensitivity.
We will be able to see her soon, after the heart echo is finished and she's taken to recovery.
Hoping for a restful afternoon and comfort for her little gums that are stitched up.

Sent from my iPhone

Broccoli

2012-01-29T18:18:00.001-05:00

Raw Broccoli:Sadie's item of the day to carry around.

Rheumatology appointment

2012-01-29T17:38:00.001-05:00

Last week we took Sadie to see her 11th doctor, a Rheumatologist. We have had concerns about her lack of circulation and also her super red hands and purple feet since she was a baby. When she is sitting in certain positions, her feet would turn VERY purple, but especially when we would hold her in a certain position. Her casts from 4 days old up till her surgery at 7 weeks made it worse. We notice her hands the most when she has a fever or she is exposed to more extreme temperatures. Finally after asking all the doctors with no known reason, it was recommended that we rule out Raynauds. After a long overview of Sadie's medical background, the doctor thoroughly examined her. She most confidently believed that Sadie does NOT have Raynauds. However, she explained in cases like Sadie's when kids have hypotonia (low muscle tone) that they usually have slow vessels and blood flow. She called it Vaso Motor Instability or blood pooling in the fingers and toes mostly due to low muscle tone related to blood flow and vessels. She also believed the color change in her hands during temperature change are related her Thermal Regulation or her body can't regulate itself in higher or lower temperatures. This pretty much explains her cold hands and feet. But it is scary when it's hot outside or very cold. Her little body has trouble adjusting. Since Sadie is having dental and a heart echo under anesthesia in February, she ordered a long list of blood work to get a baseline for her levels of autoimmunity, CBC, and thyroid.

New shirt and soooo cute

2012-01-19T07:15:00.001-05:00

Sadie's all ready for school this morning in her cute new shirt!

Still climbing

2012-01-18T16:41:00.000-05:00

Oh Sadie, please stop climbing.

Baking with Shelbi, keeping Sadie entertained

2012-01-13T18:28:00.000-05:00

Most all times, when I want to bake or cook with Shelbi, I have to let Sadie really get into a mess.
Today, Shelbi and I made a strawberry cake (box cake) and we decided to make homemade peanut butter oatmeal dog treats. We have small super cute farm animal cookie cutters, which are the perfect size for small dog treats.
The excitement of course includes me and BOTH girls in the kitchen with cabinet doors flying open...and bowls and spoons all over, flour dust and measuring cups. Oh and I can't leave out the plastic picnic table AND step stool which makes it possible for Sadie to reach EVERYTHING in the cabinets (all of which are locked, usually).
Under stressful circumstances, I'd say a half bag of mini marshmallows was the only major spill. But WOW a half bag of marshmallows can really spread out on the floor :-)

Truly, A fun Friday night at our house!

So what's going on these days....

2011-11-25T09:56:00.001-05:00

So what's going on these days....
Autumn has been consumed with getting everyone back into the routine of school... including me, and I'm not a morning person... So getting everyone up including myself has been tough. It all starts with the evening routine... dinner, bath, both girls to bed, and then I'm so relieved to lay in bed and watch a show, that I totally give up on the idea of packing lunches and getting everyone ready the night before. So this leads to stress in the morning... back packs, finding lost shoes, packing lunches, making supplemental drinks for breakfast, constantly pushing Sadie to drink her drink, changing a poopy diaper, getting her fully dressed (she is unable to dress herself), and finally out to the bus in time. All the while, Shelbi needs to got potty, I need to get the tissue that is stored up on a shelf (so Sadie won't unroll and play with it), putting a show on and meeting Shelbi's needs too. Once Sadie gets on the bus, the hustle to get Shelbi off to preschool, and flash. three hours of preschool fly by... Sadie gets of the bus a few hours later, and puff... it all starts over. I'm pooped.
Medically, Sadie's been fine, I've been making larger supplemental milkshakes for her and she's been feeding herself a little better these days. She looks healthy and even has a little belly and I can pinch a little inch on her hip. She's lost 2 top baby teeth and 2 bottom baby teeth. One top adult tooth and one bottom adult tooth have come in filling the gap that was once filled with 2 teeth. Her bottom six year molars have come in with a defect call hypoplasia (http://www.identalhub.com/article_enamel-hypoplasia-370.aspx) essentially meaning they came in missing enamel. Since she won't hold still during a dental cleaning, we are forced to put her under anesthesia to have both teeth crowned. Her dentist is also going to pull 4 baby teeth in a series of pre-orthodontic pulls to give her adult teeth room to grow in. So in a few more years she will have 4 more baby teeth pulled to give room for the next set of adult teeth to grow in straight, which might prevent her need for braces, which I can't even imagine how on earth we would be able to get in her mouth to do that. Since she hasn't had a cardiology appointment in nearly 2 years, our local children's hospital is coordinating with the dentist to have an ultrasound on her heart before her dental work at the same time she is under anesthesia, so that she will only need to be under anesthesia once.You can read more about this from my post nearly 2 years ago when she had a sedated ultrasound on her heart then... (http://sadie8p23point3.blogspot.com/2010/02/echo-under-anesthesia.html)

missing 2 top front teeth and one on the bottom

Behaviorally, she's been just as happy as always, smiling, snuggling, sweet as can be, making the best eye contact, and she has the best sense of humor, just giggling when you smile at her. She even has a little mischievous side... she will walk over to something she know she can't have and quickly grab it, laugh, and run away. She still empties out every cup she can get her hands on and loves to watch her water pour out of her straw sippy cup. We are always avoiding drinks being left out. In fact, she just grabbed Shelbi's crayon/marker bucket and emptied it out in a pile on the floor. She grabbed several markers and is marking on the bottom of her feet and belly button. It is so hard to keep things out of her reach and also attempting to teach her appropriate behavior at the same time. I focus on altering and modifying her environment so that we avoid taking from her all the time and also the stress of keeping one eye on her at all times. I know she gets very frustrated when I'm constantly telling her no and grabbing, so my motto for her is out-of-sight-out-of-mind. I've been Sadie-proofing our house again, adding another gate to the kitchen for safety and adding magnetic locks to some of our cabinets, since she can now reach her arm into the crack of the door with the other child locks and she can still pull things out. Our neighbor was kind enough to cut her bedroom door in half, unfortunately I'm afraid she will get up in the middle of the night and get hurt, so we can at least close the bottom half of her door so she is safe in her room during the night. Of course, we still have a baby monitor in her room too. I'm so thankful that she is such an amazing sleeper and goes down for bed so easily. I think she is so happy to have her space in her room, that she just falls asleep so quickly. I just worry about her waking randomly and figuring out how to get out of our house.
She was great at Thanksgiving dinner last night. I'm thankful she is sitting still for a few minutes at a time and even watching TV a few minutes at a time. She didn't try to flip any plates over, and she loved the spinach dip and crackers. She happily grabbed handfuls of dip when no one was watching.
She's doing great in school, even though her inclusive time with typical developing peers is VERY limited, we are happy that she loves school and gets excited to get on the bus every morning.

Einstein

2011-10-19T09:38:00.000-04:00

Special needs child

2011-10-17T23:10:00.001-04:00

Starbucks

2011-10-13T10:03:00.001-04:00

Just now, i was walking up to Starbucks coffee shop, two moms are outside on the patio sitting calmly and happily while their 3 children (small toddler) children play. Seeing that probably gives most people the urge to smile and say "awe so sweet." I feel that way for a few moments. Then envy... Then feeling ugh, " that must be a nice way to spend the morning" *sarcasm*
I walked in trying to push thoughts out of my head, wishing I could do that with my girls, wishing I could sit calmly with my best friend on a random Thursday morning and chat ... Simply chat.
Then in walks a Starbucks employee for the beginning of her shift, I see her look in the same direction of those 2 pretty moms smiling at their 3 children. She smiles as she walks past them and I imagine her thoughts are different than mine. She looks at them with a different lens with different expectations with a different perception. They seem happy and she seems happy for them.
I Secretly hate them.

cataracts

2011-09-25T13:59:00.001-04:00

Sadie's annual eye appointment was last week, Whoa surprising news...She has small cataracts...

Good Grief, she is scheduled for her next check up in 6 months to determine the rate of progression, since this is the first time he saw it. So, we are at a wait and see for now. Who would have imagined at an early age and those beautiful blue eyes, that she would have eye surgery in her future AGAIN.

Sadie had Strabismus (both eyes turned slightly when she was sleepy) eye corrective surgery June 2007 (i think it's crazy when your kid has been under so many times that you cant remember what happened when anymore).

First Bus ride

2011-09-08T08:58:00.001-04:00

Sadie's first school bus ride. She was a little fussy because of the errr chhhh sound of the bus and I assume the size and newness of stepping on the bus. I had hoped they would strap her in a 5 point harness, but they tried a regular seat belt with a snap lock over the latch. She settled down and the bus took off. It's all good.

Play

2011-09-07T18:29:00.001-04:00

Yep still making her sister ride along. Ha!

Siblings

2011-09-07T18:26:00.001-04:00

They play really well together, as long as Sadie let's Shelbi boss her :-)

The Arc of SHR: The Arc of South Hampton Roads

2011-08-31T20:05:00.000-04:00

The Arc of SHR: The Arc of South Hampton Roads

Sadie has a fever

2011-08-31T12:52:00.001-04:00

Poor baby threw up on me last night and has had a 100' temperature too. :-(

WHY?

2011-08-31T11:46:00.003-04:00

Last year at The Arc of Virginia State Convention in Charlottesville, VA, Simon Sinek spoke about the "Power of Why." This has been rolling around in my head for the past year. I follow him on Facebook, Twitter, and even read his blog. While, I will admit, I have yet to read his book.

This morning I watched part of his presentation again and I think we are able to connect his message directly to the success of consumer directed services. But more specifically, I think we can connect it directly to having successful, long lasting employees (Personal Aide Care Givers) for recipients of Consumer Directed Services. If hiring an attendant to do a job for a consumer is all based on activities of daily living and NOT based on the employee understanding the "why," they may not have a successful experience. Maybe people (service people, legislators, people without connections to people with disabilities, potential Personal Care Attendants) are missing the "Why" when it comes to the needs of people with disabilities. People who "get" the "why" are the people with disabilities and the people who have been given the chance to experience and value all people as equals.

Personally, over the past 3 years of having consumer directed services for my daughter, who has a rare chromosome disorder, I have struggled to have long lasting attendants for her. As I watched Simon speak again about the "Why?" I wonder if I have been hiring Attendants based on the "What" NOT the "Why."

Parents and consumers of services are directed to hire people based on the activities of daily living (ADLs) that the personal attendant is required to commit to doing for employment. They are given the hourly rate, times of day that they are needed, and they are given the list of ADLs to complete. Sometimes the person who is hired is in need of a job, they may or may not have experience with completing ADLs for a person with a disability. Even if they have experience, does this mean the attendant actually knows "why" they are doing the ADLs.

I call this the "method to my madness"...it is my "why", but I'm not sure I really express this fully to attendants. And so, I hire an attendant for my daughter, I explain what needs to be done with out explaining the "why" and so I continually find the attendant DOES NOT do what I ask. They are unable to see the meaning in the direction. But imagine this...in simplest terms, I ask the attendant to change Sadie's diaper every hour. The attendant forgets to do it and the consequence is that Sadie gets a rash on her bottom. However, maybe if I had said to the attendant, she needs her diaper changed regularly because her bottom is sensitive and therefore, she will get a rash if you don't change her diaper regularly.

Another example for my daughter is that she needs her nutrition monitored daily. So, if I start off by telling the new attendant what I want my daughter to eat and what time based on a strict routine. I even post this routine in a clear place, but the attendant may think I'm controlling or picky, but in fact, my daughter has a sensitive stomach and her body does not show hunger. Therefore, my daughter will not grow and thrive and be healthy. She could become malnourished or dehydrated.

The explanation of the "why" would give an emotional connection to the attendant to the consumer. I can not tell you how many times I have come home and found that the attendant has forgotten to give my daughter her high calorie milk supplement. Not until I explain her need for it, did the attendant truly understand. It would be like skipping a G-tube feed.

Is this possibly the missing element to the success of consumer directed services for those of us that are struggling? If we are "starting with the why" when we interview and screen during the hiring process, then we can hire people who "believe what we believe"...that people with disabilities have value, contribute, and are entitled to a life just like anyone and everyone. In Simon's words, "the goal is to do business with people who believe what you believe."

If consumers and Parents who are the Employer of Record for the recipients of Disability Services know "Why" they need an attendant and recruit attendants based on the "Why" not the "What," maybe there would be more success serving people in their home. For example, when the person with a disability is screened for a waiver service, the nurse and social worker go down a list of the "whats"...can the person dress, feed, bowel, personal care, etc. But I think the crucial element missing here is fundamentally the "Why." People with disabilities are found eligible for services for the "What," but truly to them it is really for the "Why."

Recently, I heard Dr. Al Condeluci speak about this and remind the audience of the "why." All people want a healthy happy life, they want a home, they want friends, income, they want to be a part of life and all the wonderful things that go along with being happy.

Some where along the way people in service system, people who work "in the system" are more concerned with the "what of the services" rather than the "why." People who live and breath advocacy and disability are engrossed in the "why."

So all these thoughts lead me to think about how to get people who needs a job and people who need an attendant to be on the same page about their "why." Possibly better training to parents and consumers for the hiring process, perhaps courses for new employees on self determination and person centered planning, or training for employers of record and the consumer to explain their "why."

On a legislative advocacy level, we can invite policy makers to our homes to see that the policies they create affect people with disabilities. We can seek out our local chapter of The Arc, or Center for Independent Living. I also know that some providers in our area have courses and training for their employees, maybe consumer directed services can tap into resources that are already established too.

Overall, as Simon Sinek says, "the goal is to do business with people who believe what you believe." Over the years, I learned that, but not sure I implemented it with consumer directed services and attendant care for my daughter in my home. It's time to "start with the why."

Escaping Irene

2011-08-30T09:42:00.001-04:00

On Friday we jumped in the car with the family to Escape the effects and dangers of Hurricane Irene. Considering we were hearing possible Cat 4, I think we made a good choice, especially living so close to the water. Storm Surge was a big concern in our area.

And so we were lucky enough to have family who rented a house in the mountains. I had a lot of concerns about being in a new house. After all, it is hard to sit still even at our "Sadie Proof" house. As I expected, Sadie was into everything in the kitchen...she just loves being in there. She is innately attracted to the ice maker on the outside of the fridge, the sink, the knife drawer, and of course the ever changing and interesting trash can. She was her normal self...she never stopped walking around, she was up and down the stairs, in and around exploring the WHOLE time. I don't think I ever sat down for more than a minute, and that's when I decided to barricade myself in our room with Sadie. So that she could feel more free and I could relax. At one point the 3 piece sectional sofa was split up in an attempt to block her way into the kitchen and to the stairs. Chairs were even put in front of the door to the stairs that went down to the 3rd bottom floor. The kitchen trash can was moved to the bathroom and grocery bags were hung up high for the trash in the kitchen.

A few things I didn't expect, she was able to go up and down the stairs mostly unassisted between the 2nd and 3rd floors. She actually sat on her bottom at the top of the stairs and scooted down on her butt. When someone was with her on the stairs she would hold their hand and walk down. She was mostly safe being left alone for a small amounts of time. However, a side note is she was "safe," I didn't say she didn't get into anything. The toilet paper had to be put up and any thing else like shampoo or soap would get dumped out on the floor. She emptied all our bags in our room on the floor and anything that would hurt her was already up in the top shelf of the closet. I was pretty worried about the open outlets and her pulling a dresser or tv over.

I think our trip gave me the courage to try another trip, with a little more prep, like taking a paid attendant so that I could sit a little more and enjoy the break.

Other things that I expected...Sadie was her usual HAPPY self, sweet, loving, snuggle self. She slept well once she went to sleep and she slept through the night both nights.

Overall, while it was stressful for me at the beginning of the trip, it did get better and I have the confidence that maybe we can try another family trip.

On a side note, Sadie and I met up with a friend and her family for lunch at Applebee's on Saturday. There aren't enough words to express how glad I was to spend an hour with them. Their daughters are amazing. Their oldest was so sweet to Sadie, even though Sadie kept blowing Frito mouth raspberries at her =) And their youngest shared a granola bar with Sadie.(their youngest has Down Syndrome, which I have to mention because being around a family similar to us makes me feel so normal AND I'm so grateful to have such a good friend that I feel "safe" around).

Below is a photo of the very very quick stop we made on Afton Mountain to view the Shenandoah Mountains.

Below is a photo of our neighborhood hangout, which is on the inlet. Our house is around the corner, but higher above sea level, so we actually didn't have flooding like this.

We came home on Sunday afternoon to electricity, minimal leaves, and small branches in our yard. Over all, I think we were very lucky and my heart goes out to those who had more damage and lost their lives to Hurricane Irene August 26-27, 2011.

doctor appointment

2011-08-22T12:30:00.001-04:00

Took Shelbi (and Sadie) for her post-op appointment at the Children's Hospital alone without help today (took a lot of courage). I complimented Shelbi on all her help with Sadie and she said, "Weeelllll Mom...I didn't want you to freak out." I about fell out of my seat as I was pinning Sadie between my knees and holding her arms, while the Doc was trying to examine Shelbi. HAHA We made it home without too much stress...More allergy medication and nasal spray for Shelbi due to fluid in her ears.

Surfing for the first time...

2011-08-21T10:37:00.003-04:00

Surfers Healing Camp was in our area yesterday. (click here for the History of Surfers Healing)

Our plans for the day included watching a friend's daughter surf in the morning and going to a Zoo event in the evening. A full day ahead, I had no idea our day would be so rewarding and exciting.

We started our 10min walk to the beach, eager to get there on time to see our 7 year old friend surf. We hustled to the beach and walked in to the Team Hoyt Tent telling the volunteers we were there to watch, but weren't participating in Surfers Healing. I immediately saw another friend who said that many times, if they have extra time, the surfers will take some of the extra kids out to surf. I thought, that's pretty cool, but really didn't expect for Sadie to go out. With in minutes, Sadie's dad walked over to the line and asked if they had room for Sadie.

With in seconds, they were putting a life jacket on her and walking her to the surfer and board on the beach.

It all happened SO fast...one minute we were getting settled on the beach, and the next I'm scrambling to get my camera out to take photos.

It was one of the most amazing events to witness. The view of your child sitting on the end of a surf board, as a professional surfer (volunteer) is paddling her out to the break...so surreal and so emotional. Watching them sit in the calm water rolling with the ocean. It was a moment in time where I had no fear, only joy that she was able to sit out there and feel the breeze, feel the water, and experience something new and exciting.

We stood at the edge of the volunteer lined water, watching as the surfers in orange shirts paddled out to the break and sat calmly on their boards. Watching from the shore, it looked calm and peaceful. I can say in my life living so close to the beach, I have never surfed, but I was emotional at imagining the joy the children had being out there in the water guarded by their surfers and protecting them. I felt secure too, as if I was letting go a little bit, that someone else was able to keep her safe.

Sadie's surfer (I wish I knew his name) took her out 3 times, and only wiped out once. He had amazing upper body strength, as he pulled Sadie up with one hand as they were riding the waves. Sadie's didn't keep her feet on the board and he was able to ride to shore holding her in the air. It really was one of those times in your life where you know you will remember every moment and cherish the volunteers, surfers, and organizations that care so much and offer so much to people with disabilities. Thank you Surfers Healing!

Sadie's enjoying the kiddie pool on our deck on this 102 degree evening. HOT!

2011-07-22T17:59:00.001-04:00

Another missing tooth

2011-07-21T18:56:00.002-04:00

Sadie eating her first ice cream cone

2011-07-14T20:56:00.001-04:00

I ordered Sadie her first Ice Cream cone from McDs yesterday. I only asked them to fill it to the top of the cone. She was so cute, she mostly ate the bottom first with it upside down.

Sadie's First Tooth

2011-07-14T20:41:00.001-04:00

Sadie lost her first tooth this evening. Awe, so cute with that little gap.

the retard word strikes my heart again.

2011-07-09T10:37:00.000-04:00

A FB friend, who I would consider an acquaintance more than an actual dear friend, posted this comment last night, which was directly after asking people to visit her little country store in the rural area of our city.

"I am so tired of dealing with socially retarded people. They just go through life with no filter on their mouth. They say whatever is on their minds without thinking of how it might be hurtful to others. I never know quite what to say to these people. Do you call them out right then and there? Ignore them? Shoot them? " ~ "FB friend"

I guess that's the danger in facebook. We read thoughts and post from "friends" who don't actually know they post words that are hurtful to our family, most directly hurtful and painful to Sadie and others who are offended by the r-word (most of my real friends are extremely offended by this word).

Her post has been bothering me all night and all morning, as I see people "LIKE" her comment, and even comment, with little regard to her use of the r-word.

I get it, so called "normal" people who act like jerks, or assholes, or flat out just don't give a hoot if they offend someone. But my FB friend did the ultimate, she associated intellectually disabled people with jerks, by directly calling them socially retarded.

But even so, I find it extremely ironic that she is actually contradicting herself by posting such an ugly statement about people in general. What is "socially acceptable" about posting a comment like this on facebook, when she has over 300 friends, and her business page has over 1000 "Likes."

Here is a link to one of my favorite bloggers...he says it pretty well... http://www.schuylersmonsterblog.com/2011/05/just-word.html

Here's another powerful message from Glee.http://www.youtube.com/watch?v=T549VoLca_Q&feature=youtube_gdata_player

"Not Acceptable" is a powerful and compelling 30 second television PSA which gives voice to a variety of diverse communities each of whom expresses that it is not acceptable to call them by what were once common words, but are now recognized as offensive slurs. It culminates in actress and self-advocate Lauren Potter from "Glee" stating that it is not acceptable to use the word 'retard' and she and "Glee" co-star Jane Lynch make a call to action to stop using the word and to promote the acceptance and inclusion of people with intellectual and developmental disabilities and to make their pledge online at http://r-word.org.

The bottom line...find a better word to describe what you want to say, or better yet, If you don't have anything nice to say...say nothing at all. People are offended.

zoo

2011-06-04T09:52:00.000-04:00

We had a pretty exciting trip to the zoo on Thursday. We were lucky enough to walk up to the Tiger exhibit to find one of the tigers in the water next to the glass. Even the zoo employees were standing in awe. They said the tigers rarely come that close. Unfortunately, we were only able to see him for about 1 minute that close before he swam back to land.

Inclusion Manual or Plan....what is the difference?

2011-05-12T13:52:00.000-04:00

Fellow Partner writes to her child's school requesting the ever confusing Inclusion Manual that is called the Inclusion Plan at the school level, but at the system wide level called the Inclusion Manual. Are you confused yet? Me too!

Here's the link to her Blog http://anyasjourneytoinclusion.blogspot.com/2011/05/my-letter-to-principal-and-assistant.html

Special Ed preschool exit

2011-05-05T22:21:00.000-04:00

Today at Sadie's IEP meeting, she will be exiting from the reverse mainstreaming class and entering Kindergarten in the fall.
She was found eligible to continue to receive special Ed services next year, but her label must be changed from "developmental delay" to another label before her 7th birthday. Label options are testing for the Intellectual Disability label OR Other Health impaired (OHI- meaning a medical explanation for her "issues."
Placement, self contained classroom with only children with disabilities OR an inclusion settig will be determined at another IEP meeting soon. Stay tuned...

today in the backyard

2011-05-02T21:49:00.000-04:00

being kids, climbing trees, swinging on swings, laughing, watering the garden....all fun, all inclusive, all reflects being a child....

IEP Team meeting, Preschool exit

2011-05-02T21:39:00.000-04:00

Sadie was evaluated for Special Education Services nearly 4 years ago. She entered preschool at our home school and shortly there after we removed her from that self contained setting (I won't elaborate to avoid burning any bridges at this time).
We placed her in a church preschool inclusive setting, where we were thrilled to see her have the chance to be free and play with her peers....as a 2 1/2 year old should be able to do.
After spending about 6 months at that preschool, right up to the end of the school year, we were happy about her placement. The teachers were loving and willing to accept her and all the children.
The following school year in the next class (the 3 year old class), one teacher in particular, refused to be in the same room as Sadie and told the director that she wouldn't go back in that room until Sadie was removed. She was against inclusion.
So now after Sadie's 2nd year in Reverse Mainstreaming (inclusion 6/6 students), which we believe was successful and beneficial to Sadie, she will be exiting the preschool special education program and entering Kindergarten, which she could have done last year.
I fear we may be facing the same reality as we did in 2007. The school system must change her label from developmental delay to ____ by the time she turns 7. Currently she is out of zone and we are hoping to have her back at her home school in the most inclusive environment best for her. We want to know she will be attending her home school (Least Restrictive Environment) with all the supports necessary to make her as successful as she can be (IDEA).
We hope her sister will join her there in the 2012-2013 school year and they build relationships with the neighborhood kids, just like any child should be given the right to do.
Her IEP eligibility meeting to exit preschool and enter Kindergarten is on Thursday and has been consuming my thoughts and emotions about Sadie's future and what's best for her. Oh how I wish I had a crystal ball, to know what battles to fight and what realities to face.
What I do know...Sadie is a sweet loving little girl, who is growing into her own independence whether people like it or not. She is wanting to have control over her movements and actions, just like the respect any of her age appropriate peers are given. She urns for control and independence caught in a world of adults who love her but most of time misunderstand her. She wants to swing alone, walk alone, run alone, dress or undress, she is Self Determined, and she wants to be heard. She wants to be understood, She wants to have friendships with our neighbors with her classmates. She wants to feed herself and put her straw in her juice box. She wants to climb the stairs without support. She wants so many things, and most of all I want her to have as much control and choice over her life too. After all, she is 6, she is a girl, she is herself and she knows herself and she wants to be a part of LIFE.

Fun at the Zoo

2011-04-24T11:14:00.000-04:00

We had a lot of fun over Spring Break! Especially thanks to Sadie's new attendant, Jessica, she has made life much easier. And of course, many thanks to Meghan who is a big sister to the girls.

VA Special Education REGS

2011-04-24T11:05:00.000-04:00

http://www.doe.virginia.gov/special_ed/regulations/state/regs_speced_disability_va.pdf
Virginia Department of Education Special Education REGS:

D. Applicability of least restrictive environment and FAPE provision in state-funded placements.
No state-funding mechanism shall result in placements that deny children with disabilities their
right to be educated with children without disabilities to the maximum extent appropriate, or
otherwise result in a failure to provide a child with a disability a free appropriate public
education. (34 CFR 300.114(b))

8VAC20-81-130. Least restrictive environment and placements.
A. General least restrictive environment requirements.
1. Each local educational agency shall ensure: (34 CFR 300.114)
a. That to the maximum extent appropriate, children with disabilities, aged two to 21,
inclusive, including those in public or private institutions or other care facilities, are educated
with children without disabilities; and
b. That special classes, separate schooling, or other removal of children with disabilities
from the regular educational environment occurs only if the nature or severity of the
disability is such that education in regular classes with the use of supplementary aids and
services cannot be achieved satisfactorily.
Department of Education
8VAC20-81-130. Least restrictive environment and placements.
71
2. In providing or arranging for the provision of nonacademic and extracurricular services and
activities, including meals, recess periods, and other nonacademic and extracurricular
services and activities provided for children without disabilities, each local educational agency
shall ensure that each child with a disability participates with children without disabilities in
those services and activities to the maximum extent appropriate to the needs of the child with
a disability. The local educational agency shall ensure that each child with a disability has the
supplementary aids and services determined by the child's IEP team to be appropriate and
necessary for the child to participate in nonacademic settings. (See also 8VAC20-81-100
H.) (34 CFR 300.117)
3. For children placed by local school divisions in public or private institutions or other care
facilities, the local educational agency shall, if necessary, make arrangements with public and
private institutions to ensure that requirements for least restrictive environment are met. (See
also 8VAC20-81-150.) (34 CFR 300.114 and 34 CFR 300.118)
B. Continuum of alternative placements. (§ 22.1-213 of the Code of Virginia; 34 CFR 300.115)
1. Each local educational agency shall ensure that a continuum of alternative placements is
available to meet the needs of children with disabilities, aged two to 21, inclusive, for special
education and related services.
2. The continuum shall:
a. Include the alternative placements listed in the term "special education" at 8VAC20-81-10,
including instruction in regular classes, special classes, special schools, home instruction,
and instruction in hospitals and institutions; and
b. Make provision for supplementary services (e.g., resource room or services or itinerant
instruction) to be provided in conjunction with regular education class placement. The
continuum includes integrated service delivery, which occurs when some or all goals,
including benchmarks and objectives if required, of the student's IEP are met in the general
education setting with age-appropriate peers.
3. No single model for the delivery of services to any specific population or category of
children with disabilities is acceptable for meeting the requirement for a continuum of
alternative placements. All placement decisions shall be based on the individual needs of
each child.
4. Local educational agencies shall document all alternatives considered and the rationale for
choosing the selected placement.
5. Children with disabilities shall be served in a program with age-appropriate peers unless it
can be shown that for a particular child with a disability, the alternative placement is
appropriate as documented by the IEP.
5. Children with disabilities shall be served in a program with age-appropriate peers unless it
can be shown that for a particular child with a disability, the alternative placement is
appropriate as documented by the IEP.
C. Placements. (Regulations Establishing Standards for Accrediting Public Schools in Virginia
(8VAC20-131); 34 CFR 300.116)

Change

2011-04-21T05:22:00.000-04:00

As usual Schuyler's monster blog hits home as we encounter similar issues. IEPs, feeling of reality and hope. Not knowing is so hard. Not knowing what's best and when to fight so damn hard so you don't ever feel like you didn't give it your best. Can't people understand that? I can see how hard it would be for someone to try and imagine being in my shoes. Shoot having a typical child like Shelbi is a piece of cake. Yes I know times will Be different when she's a teenager, but I'm talking these years, now, little worry for her Because she learns everything this first time. How will she feel when she realizes Sadie has a disability? She is an amazing sister, almost a little mother to her. So in times like these, all I can ask is wouldn't any mOther fight for the love and acceptance of her children...YES

http://www.schuylersmonsterblog.com/2011/04/spring.html

Community

2011-04-15T14:52:00.002-04:00

A community that excludes even one of its members is no community at all.

--Dan Wilkins, poet and motivational speaker

in September 2006 Possibilities

Friendship

2011-04-14T22:13:00.001-04:00

Abraham Lincoln said, “If you want to test a man’s character – give him power.”

With power, leadership, control over making the decisions for another person, a person takes on the responsibility to be open minded, challenged to think outside the box, and mostly to be considerate and compassionate to all people. Having the ability to alter a person's path in life is a huge burden to bear, or blessing to witness.

How one chooses to lead the direction of the person that is in question may truly test their character, test their ability to think change and inclusion can be a good thing. For what's one of the most painful emotions...feeling left out.

I challenge every reader of this post to imagine a world where we are given a chance to succeed or fail, before it is presumed we will fail, and are therefore not even given the chance either way.

Education comes in many forms, not restricted to academics. Let me ask you your favorite memory from high school or college...it is academically related or do you remember the people you were with?

oh the life....

2011-04-07T20:41:00.000-04:00

Sadie put on quite a show for our new Service Facilitator this past week. Her 30day visit was, well, very interesting. Unknowing and not having the time to read Sadie's "file," I allowed Sadie to give P a full introduction to her on her own...right down to poking her nipples, throwing ice, giggling while pulling her glasses off. Sadie was joyous and giggly, happy as always, and did everything to show her that she needs a 1:1 attendant. Her dad even looked at me at the beginning of the visit to ask if he should step in, ""no way," she needs to document everything Sadie's doing.

P said, "Anything new in the past month?" Well, I said, yes as a matter of fact, Sadie fell backwards 4 steps off our deck, a few weeks before that she had a sprained ankle, was x-rayed 2 times, and wore a cast for 2 weeks. We have no clue why she hurt her ankle (she doesn't talk). She also had the flu for about 7-8 days. And had 2 poopy diapers today...

Oh and happy birthday Sadie with Strep throat today.

Yesterday, I had 3 appointments to interview people and none showed up. Luckily, 2 actually called to say they couldn't make it (hours before the appointment).

Enough of the complaining, I'm not supposed to do that right? Wonderful husband who allows me to stay home with my girls,and all the while, I'm probably misunderstood because very few people live the life I lead.

On the positive note, Sadie truly is so happy and snuggly, sweet and true in the most raw nature (4 poopy diapers yesterday aside), she is amazing and has taught me patience, love, understanding, and had broadened my world thoughts, feelings, about life sooooo much. I treasure everything, and try to take nothing for granted.

Happy Birthday Babygirl, I love you.

Former School

2011-03-31T21:41:00.000-04:00

Yesterday, I walked into Sadie's former school to pick up a friend's child. The same school where the "3s" teacher refused to be in the same room as Sadie. She literally refused to be in the same room as her. Because Sadie belongs in a SpED class NOT in inclusion....according to her.
People like her are who we are fighting against. Closed minded, people who think they are better, love better, have a better life....!@#$ her....took everything I had not to say that to her yesterday....Am i really the bigger person for keeping my mouth shut when she so freely voiced her opinion. Well here's my voice...$%^& her.

Hello again

2011-03-29T10:17:00.000-04:00

Ok, so this might make me wishy washy, but oh well....I opened the blog back up to the public again after hearing my hubby's argument about all the people who have been comforted by reading Sadie's Story.

For the psychos out there who think Sadie is Sadie because we had beer in Italy when she was conceived, well my good friends would know exactly what I would say about that...so I'm going to leave that at that. @#$% you.

So Sadie kept her cast on for about 2 weeks, after a follow up visit to the ortho (who I just adore), he took another xray and couldn't find anything wrong with her foot. Was probably a sprain, tendonitis, or an ache, we just don't know. Anyway, she is not limping anymore and seems to be just fine.

We will be having her fitting for new DAFOs soon, just to wear at night to keep her tendons stretched. Oh i love getting her casted for those fittings.....NOT.

Anyway, hard to believe my baby will be 6 soon, and starting Kindergarten next year too. All day school...I won't know what to do without her all day....Maybe finally rest a little.

Sadie's First Birthday

Private

2011-03-22T17:56:00.000-04:00

Dear Friends and Family, I've decided to make Sadie's blog private to only emails/people I allow to see it. Please let me know by email, if you would like for me to allow you to have access to her blog.
Thanks for you understanding,
LisaLane757@gmail.com

Sadie's cast

2011-03-05T20:36:00.001-05:00

Last week Sadie started limping with very little signs of injury. She had a small swelling on the top of her right foot, but nothing that looked bad. B decided we should go ahead and take her to the Ortho. They X-rayed her foot, but didn't find any breaks. The doctor decided that it might be a sprain and went ahead and cast her foot. Frankly, I'm surprised she didn't hurt herself fighting to get free from me and the doctor holding her down while he wrapped her foot. I don't blame her a bit, but she does not like to be held down.
Anyway, keeping the cast on for 2 weeks isn't that bad, I'm just really glad it isn't summer. We've had to keep her out of the wet yard and sandbox, which she absolutely loves to be outside.

CDO Video

2011-02-17T16:18:00.001-05:00

Snow Days

2010-12-28T11:29:00.000-05:00

Willowbrook Institution Follow up by Geraldo from his 1972 visit

2010-11-08T16:06:00.001-05:00

In 1972, Geraldo Rivera did an expose on Willowbrook Institution in NY. If you have never heard of Willowbrook, if you have never thought what an institution looked back in the 1970's, if you have ever wondered about institutionalization in the 60's and 70's, watch this follow up story about Willowbrook. You will forever remember this place.
(click on the title and it will take you to the video)

BM

2010-10-04T11:42:00.000-04:00

Sadie had her 3 or 4th bm on the potty yesterday BUT her FIRST bm actually walking to the potty by herself sitting and going all while I was in the kitchen cluelessly making brownies!!!
Persistence isn't always annoying if you get what you want!!!
Sent from my Verizon Wireless BlackBerry

sandbox turned pool with 5 days of RAIN

2010-10-01T16:45:00.001-04:00

potty and more potty

2010-10-01T13:50:00.000-04:00

Potty training is seriously driving me crazy.....Yesterday she pooped in her underwear 3 times and peed all over herself twice. Keeping on top of putting her on the potty regularly is exhausting, sometimes she goes and other times she won't. I'm having a really hard time figuring out how to get her to have a BM in the potty too. She will grunt and grunt and I will repeatedly run her to the potty, but always she goes the second her underwear are pulled up and the 2 seconds that I'm not stalking her. The person getting potty trained here is "me." I can't give up yet though. I really do think that once we get her BMing on the potty that it will be easier. Any suggestions to get her to release.....

blowing raspberries....not funny to the speech therapist

2010-09-27T12:31:00.000-04:00

"Sadie is a wreck today, " was the first thing the pregnant twenty-something-first- time-mom speech therapist said the moment she saw me in the lobby of Sadie's school an hour ago. She continued to describe how Sadie was blowing raspberries or zerberts and she continued to tell her "no" and sign "stop" during her short 20 minutes of speech therapy. Her therapy session is at the end of Sadie's half day preschool. She continued to describe how Sadie thought it was funny and continued even though she said "no" and signed "stop." She was genuinely frustrated that Sadie continued to do this. And truthfully, Sadie looked like she had been crying, which is VERY rare.

Okay so Really????? Sadie IS intellectually disabled, she has the intellect of a two year....what the @#$% do you think two year olds do.....they blow raspberries and zerberts and they think it's funny. Honestly in the scheme of life is blowing raspberries and zerberts REALLY that bad. Sadie is essentially non-verbal, so how else you you expect her to communicate? The fact that the speech therapist found it necessary to complain over something so small the moment she saw me is concerning. Hell, she's luck Sadie didn't poop in her underwear or pee all over herself. Hell, how about starting the conversations with a positive comment first and then pick your battles. Really? Blowing raspberries is the definition of Sadie being a wreck today in a 20 minute speech session???

GRRRRRRR...........

Blogger Hibernation

2010-09-24T22:46:00.001-04:00

I think I'm ready to come out of blogger hibernation. I started this blog knowing that my audience was "me." I thought a few people here and there might read it, but really it was for me to express my feelings and in many ways, this blog became my friend. The friend I could tell anything to, share anything with, without judgement. Ironically, I have been saying for the past few months that I have been hesitating to write because I was nervous about Sadie's article and I knew the blog would be mentioned, I didn't know who would be reading it after it was in the paper.

But I just realized that might have had nothing at all to do with my lack of posting. I just now in the last 3 minutes and the previous paragraph realized that I haven't been sharing because I didn't need to.

In the past 3 months I bonded with two of the most amazing women. They see me truer than anyone ever has..they both have children with special needs and they know exactly what life is like. The unspoken connection that the three of us share has brought a sense of peace to the craziness called my life. I have spent the past 5 years isolated from nearly everyone and I just now realized how much happiness they have brought to my life.I realized just how lonely I have been. We have been sharing everything with each other and it feels good to have such wonderful friends.

We meet for coffee, or share a meal, we cry through movies, and we even give support with hugs and crying together. We know each other, we KNOW. With a look, a phone call, or a text, I know I've got friends for life.

And so I'm ready to come out of blogger hibernation because I have a lot to share now, wonderful things have been happening and I feel like I'm living again. And so the sequence of events that keep leading me to something new all started right here with this blog, this friend that I counted on and I could tell anything to, all thanks to Sadie giving me a new perspective on life and taking nothing for granted.

I'm looking forward to sharing more....for starters....Have you seen the movie Extraordinary Measures with Brendan Frasier and Harrison Ford? The movie was inspired by the true story about the Crowley Family in the novel The Cure by Geeta Anand. John Crowley also wrote a memoir, Chasing Miracles. Anyway, our local children's hospital is hosting its annual bioethics conference and John Crowley is the key note speaker for the day. Anyway, as one thing has lead to another, as it always will, I was asked to sit on the parent panel at the conference. Anyone that knows me knows that I'm pretty shy, so the thought of sitting on a stage in front of 200 heath professionals scares the @#$% out of me. Thankfully, I have several more weeks to calm my nerves and read The Cure. Chasing Miracles was powerful and hit home.
Looking forward to more blogging....

quote

2010-09-20T14:42:00.001-04:00

"Justice will not be served until those who are unaffected are as outraged as those who are." -Benjamin Franklin

Virginian Pilot Article

2010-09-08T22:16:00.001-04:00

http://hamptonroads.com/2010/09/sadie-will-never-grow-and-her-parents-will-never-give?cid=srch

Sadie

2010-09-08T22:02:00.003-04:00

Sadie always playing with her tongue.

The only photo from Sadie's first day of school. hmmmm, I had good intentions of taking a lot, I just don't know what happened?

Something to think about....

2010-08-25T00:39:00.002-04:00

From one of my favorite blogs:

Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010Yesterday at 4:33pm http://davehingsburger.blogspot.com/2010/08/people-who-are.html?spref=fb

Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010 The People Who 'ARE' It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people. No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt. People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others? It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified. The people who 'ARE' what the 'R' word refers to have a long history. They have been torn from families and cast into institutions. They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized. They have been held captive, have been enslaved, have had their being given over to the state. They are the group in society most likely to be physically, sexually and financially abused. They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system. They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts. They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt. They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity. They are the least likely to ever be seen as equal, as equivalent and entirely whole. They are the victim of some of the most widespread and pervasive prejudices imaginable. They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats. They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out. They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship. That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world. That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future. That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat. They are a people. They ask for respect and receive pity. They ask for fair play and are offered charity. They ask for justice and wipe spittle off their face. They ask to silence words that brutalize them and their concerns are trivialized. They ask to walk safely through their communities and yet bullies go unpunished. They ask to participate fully and they are denied access and accommodation and acceptance. And this is NOW. This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice. It is a voice not yet heard. It is a voice not yet respected. It is a voice not yet understood. But it is speaking. And when it is finally heard. The world will change. The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010Yesterday at 4:33pm http://davehingsburger.blogspot.com/2010/08/people-who-are.html?spref=fb
Rolling Around In My Head esse quam videri / A Blog By Dave Hingsburger Monday, August 23, 2010 The People Who 'ARE' It's in the press again.
Sent from my Verizon Wireless BlackBerry

I thought...

2010-08-20T07:38:00.001-04:00

I thought I would have to teach my child about the world, but instead I have to teach the world about my child." ~Unknown
Sent from my Verizon Wireless BlackBerry

Recent Photos

2010-08-07T09:50:00.003-04:00

Sadie on the deck

Sadie fell in a huge hole at the beach

Sadie having fun playing at Grommet Island Park on the beach

I am determined

2010-08-06T17:24:00.002-04:00

The past two weeks in many ways have flown by like a blur. I've been habit training Sadie to go on the potty and it has truly been a tiresome experience. We (I) have spent countless hours sitting, saying, repeating, "Sadie, go potty." I even went so far as to paint the bathroom at the beginning of the week, with the thought that if I'm going to be in here this much, I might as well do something. We immediately had pee pee success and I have really felt that with a schedule and a routine that Sadie will be able to be habit/time trained.
For those of you that have no-idea what "that" means, habit/time training essentially is training the caregiver to put the child on the potty at routine times or after routine habits. For instance, immediately upon waking, eating, napping, etc. or time training meaning every hour putting her on the potty. I'm getting all this knowledge from Toilet Training for Individuals with Autism and Related Disorders by Maria Wheller. Now for all of you that think WOW I didn't realize Sadie had advanced so much or understood that she could go on the potty. My response to you is once again, Sadie sometimes gets it and sometimes she just doesn't get it, and I'm reminded of that because she just pee-ed all over the couch, not because it was an accident, not because she has even an understanding that that was the wrong place to pee, but because SHE JUST WENT. She had to go, and so she did, without any bit of conceiving that she should have gone on the potty. Now, once again, don't get me wrong, just this morning I was sitting in the kitchen and out of the clear blue, I hear her tinkling on the potty all by herself. Yes, she walked her little butt right on in the bathroom, sat down, and pee-ed. But that is the enigma with Sadie, just when you think she gets it, she shows that she doesn't, and then she shows that she does again. AND, that is why potty training, this habit/time training is going to be, without a doubt, an ongoing process and possibly be months in the making of forming the habit. They say something like 7-12 times make a habit (someone better fact check me on that), but that it takes hundreds of times for a child with an intellectual disability to learn something too (fact check that too). And so with that said, we are on at the end of our 15th day of naked habit/time potty training and I'm not about to stop now. We are going to push through this and we are going to do it, I don't care if it takes 1 year or 5 years.
I am determined.

BM

2010-08-03T13:57:00.001-04:00

I have been keeping Sadie naked and potty training her for the past 12 days. She has yet to have a BM on the potty until today!!!! Yay Sadie!!!
Sent from my Verizon Wireless BlackBerry

Eating

2010-08-02T09:52:00.000-04:00

Imagining there are people starving in the world ...Sadie has virtually every opportunity to eat always. Yet, she could truly care less about eating...WTH
Sent from my Verizon Wireless BlackBerry

Washington Post

2010-07-21T22:41:00.001-04:00

We are in tomorrow's Washington Post. Our photos are online now... http://www.washingtonpost.com/wp-dyn/content/article/2010/07/21/AR2010072102651.html?sub=AR
Sent from my Verizon Wireless BlackBerry

85% divorce rate

2010-07-21T21:04:00.000-04:00

http://supportforspecialneeds.com/2010/07/21/eighty-five/ by my favorite blogger Robbert Rummel-Hudson, Schyuler's Dad
Sent from my Verizon Wireless BlackBerry

Microarray SNP results

2010-07-16T20:53:00.000-04:00

Hello everyone! Sadie had the Microarray SNP test and a CBC blood test. We found out today that she is anemic and will be taking iron supplements. The SNP test showed that her new karotype is deletion 8p23.2 extra xp 22.13 to the terminal deletion. In short, she is missing more chromo 8 than we originally thought an...d she has a larger band of extra xp than we previously thought too. What does all this really mean....???? Not to much, nothing has really changed....I wish I could say differently, but Sadie is Sadie and she will continue to show us her path.

a disgusting topic, still funny none the less

2010-07-13T08:54:00.002-04:00

While I haven't posted too much in the past few weeks, I found it funny to just go ahead and post this quasi-milestone....Sadie has been getting a complete giggle out of farting. There I said it. When the moment hits her, she will look dead at me, fart, then just so big and proud, she smiles, and follows that up with one of her classic squealing giggles.

With that tidbit of information out there in the universe, I can fill you in on the past few weeks and how summer is going around here.

I honestly haven't felt like writing much because of my new dilemma with making sure I paint a real picture of life around her/here. I struggle to stay strong. I try super hard to keep all emotions about the disappointments about Sadie hidden even from myself. When I feel those tingles of pain ripple through my soul, I quickly tell myself to pull it together. I remind myself of all the wonder and gratitude she has brought to my life. No matter how hard I try to squelch those feelings, they pop in and out weekly and on occasion, daily. I can compare it in a sense to the same feeling when you see one of your children nearly fall, that outer tingle on your skin as you reach out to catch them. But this is different this is the inner tingle, the inner fear that no matter what I do, I CAN'T FIX HER. It's the tingle inside that makes your eyes well up with tears and you are a breath away from pulling it together or finding a moment to cry.

And so I wrote that hours ago, in fact it was this morning, but still to reread it before posting, I wouldn't change a word.

On another note, the summer seems a third over and we have been going to the beach, water park, hanging in our back yard, and of course watching A LOT of Disney's Princess and the Frog. Sadie's attendants have made it possible for all the fun outside these four walls and I'm grateful to live in a country that offers services to her. I don't feel paralyzed to the enormous amount of energy it takes to get both girls out the front door, especially Sadie who still requires 100% help to dress, potty, eat, etc.

Both girls did have random fevers last week that lasted about 48 hours and both recovered without major incident.

Overall, we are having a wonderful summer.

Dear Universe

2010-07-12T12:18:00.001-04:00

Thank you for the bizarre coincidences in the past couple of days....they are really getting me thinking. Although some say there are no such things as coincidences.....hmmmmm
Sent from my Verizon Wireless BlackBerry

Good Morning

2010-07-11T21:25:00.000-04:00

Sent from my Verizon Wireless BlackBerry

Sonnets

2010-07-11T07:59:00.001-04:00

Elizabeth Barrett browning: 685. Sonnets from the Portuguese iv IF thou must love me, let it be for naught Except for love's sake only. Do not say, 'I love her for her smile—her look—her way Of speaking gently,—for a trick of thought That falls in well with mine, and certes brought 5 A sense of pleasant ease on such a day'— For these things in themselves, Belovèd, may Be changed, or change for thee—and love, so wrought, May be unwrought so. Neither love me for Thine own dear pity's wiping my cheeks dry: 10 A creature might forget to weep, who bore Thy comfort long, and lose thy love thereby! But love me for love's sake, that evermore Thou mayst love on, through love's eternity.
Sent from my Verizon Wireless BlackBerry

Fathering a Daughter with a Hidden Voice | Support for Special Needs

2010-06-20T16:27:00.001-04:00

http://supportforspecialneeds.com/2010/06/17/fathering-a-daughter-with-a-hidden-voice/
Sent from my Verizon Wireless BlackBerry

end of school=beginning of summer

2010-06-10T10:30:00.002-04:00

well...one more short week and another year of school will be over...summer school or extended school year begins...it still feels like a toss up to me...driving clear across town for 3 hours of summer school doesn't sound that exciting, but the 2 hour break I'd have would be great. ESY might also mess up our summer plans for the water park and beach, but then again ESY is only 5 weeks....see what I mean...I keep talking myself in and out of it. I guess the bottom line is...what is best for Sadie and the greater good of the whole family at the same time....ok still can't decide...

recent obsession with ice

2010-06-05T09:28:00.001-04:00

Sadie has replaced her bubble push talk obsession with ice. So I took one of her cheaper one push buttons and a photo of ice, I put it in a 4x6 photo sleeve and taped it to the refrigerator. Every time she wants ice she pushes the button. It seems that she is doing this every 2-10 minutes…. The idea is that she gets an immediate response and hopefully learns to push the buttons to communicate her desires…..hopefully….

energizer bunny

2010-06-04T12:23:00.001-04:00

funny how when you make a vow to be honest, that you then reconsider just how honest…even omitting…that’s not honest either is it? So, my last post i made a vow that my blog posts would be real…and here’s the reality.

i took shelbi to the new park on the beach this morning, the one for “all” abilities…and to my happy surprise, i ran into a friend who has a little girl with Down Syndrome. I consider this friend to be very similar in personality to myself and we always have lots to talk about. Her daughter is about 6 weeks younger than Shelbi.

now here it comes…the truth…i watched her chase after her, assist her with all levels of the playground, the slide, the steps, and we followed her around chatting , while she followed her little girl around to keep her safe. it finally occurred to me that this is EXACTLY what i must look like to all other people when i am chasing after sadie. i just kept thinking, how can it not be obvious to the people around me that while i chase and follow sadie that it must be exhausting…she’s like the energizer bunny….she just keeps going. i wonder what other people think when they see us together, when they see us following sadie for her safety. when they see that we NEVER have the chance to sit and talk, that we NEVER get the chance to enjoy the meal with everyone else…….is it really not so obvious?

usually when we go out to the park, cookouts, family functions, most of the time, everyone else is able and allowed to sit in their little *circle of friends and family*…they get to catch up and chat, but with sadie we are in constant movement to keep her safe from falling, putting dangerous things in her mouth, climbing on or standing on objects that would hurt her, holding her hand as she walks across uneven ground. and i walk and walk and walk and the little energizer bunny just never slows down for a break…NEVER….and…

thank you all the people who have been aware of the never ending following that we do to keep sadie safe and especially a big thanks to Amy and Nanny for helping me have fun at last Sunday’s cook out by following sadie and helping me keep her safe, while also being able to have some fun too.

NUK

2010-05-31T09:43:00.002-04:00

I'm adding this video because the OT keeps telling me to use the NUK, which we do all the time and have had for the past 2 1/2 years. This video was taken March 2008..........

I'm exhausted with the same ideas and need new ideas to help her chew, swallow, and reduce the drooling. but when you have a child who could really care less about food and eating and seems to be stuck in the put everything in her mouth phase....well what else am I supposed to do???????

honestly

2010-05-20T18:30:00.001-04:00

Lately, I’ve been reading a lot of blogs by other women who have children with disabilities. The more I read, the more I feel like I’m painting a fake coat of paint over my life in my blog. These women are truthful, deep, eloquent in their words about their lives. They say all the things that I want to say, all the things that I blog throughout the day in my head. I’ve been realizing that I always cut the truth short and try to make it a sweet positive picture. I never want to burden anyone with my normal, my reality, my disappointments. I never want to offend anyone, especially the people who I love the most who read this, but truly don’t get Sadie or they are afraid of her, or they are afraid to say anything…say something…After all, the majority of the people I know, simply have nothing to complain about, well besides the insignificant normal issues of parenthood or life. When someone asks about Sadie, I most always reply, she’s great, thanks for asking. But when I read the posts by these total strangers, these foreign bloggers, these yahoo groupers, I feel connected and it feels good to know I’m not alone in my feelings.

It hit me the other day after having a few conversations with my new friends. My new friends who also have children with disabilities, that the dynamics of my old friendships have changed, and I’m the one who changed. I’m the one who doesn’t have the patience to listen to the trivial. I don’t know exactly where I’m going with my post/point here, but I just want to start being real here on this blog. I don’t want to sugar coat it, I want other mothers who might be in the same position as me to feel a connection to me the way I do to them. I never meant to mislead anyone to think that life with Sadie is easy and wonderful all the time. Don’t get me wrong, life is wonderful and I have a lot to be thankful for, but it isn’t the normal that most of my normal friends have. (please don’t hit me with “who is normal”) And this reminds me how thankful I am for the fact that I appreciate everything that Sadie does in her life. Every little utterance, every hug, every kiss, I’m even grateful when Sadie puts her straw cup on the table rather than throw it. Silly to you maybe, but that is a huge accomplishment and testament to her cognitive growth…she reached that milestone, and I love it.

at the botanical gardens

2010-05-17T08:00:00.001-04:00

We celebrated Mother's Day with the family at Botanical Gardens. Sadie
absolutely loves to be around other people, smiling, laughing, simply
exploring. This photo was taken after she spent a few minutes waiting in
line to see the bald eagle nest at the Botanical Gardens. She patiently
stood there and when her turn came, she jumped up and down with her arms in
the air indicating that she wanted to look next. And she actually did look
for just a second. But most of all she enjoyed being on the step to the
telescope and Memaw standing behind her trying to help.

Grateful Mama: Thoughts on mothering my daughter

2010-05-16T22:11:00.001-04:00

http://sugarmagnolia70.blogspot.com/2010/05/thoughts-on-mothering-my-daughter.html

Sent from my Verizon Wireless BlackBerry

Beach!

2010-05-14T13:04:00.000-04:00

We made it!!!
Sent from my Verizon Wireless BlackBerry

We made it!

2010-05-14T13:02:00.000-04:00

Sent from my Verizon Wireless BlackBerry

Hibiscus Flowers on DAFOs

2010-05-13T15:49:00.000-04:00

The Henry's Family....Sadie has the same hibiscus flowers on her dafos!!!
Sent from my Verizon Wireless BlackBerry

Ortho update

2010-05-12T20:38:00.002-04:00

I'm making this short and sweet because I'm exhausted. We saw the orthopedic surgeon yesterday for Sadie's annual checkup. He said her feet look good, but she is still toeing-in. He recommended tibia torsion surgery, where the tibia is cut and then turned, and reattached so the foot is turned out or straight. She would then be in casts for 6 weeks....sounds like ZERO fun...for me or her...for right now...i say NO.

Several postings ago

2010-05-08T13:51:00.001-04:00

I would like to say for the record that I don't agree with the doctor that said Sadie was experiencing the terrible 2s....She didn't feel good and had the beginning symptoms of a sinus infection. She probably had a headache...anyway, she ended up being on back to back antibiotics 5 days after that appointment and a runny nose 1 day after that appointment. AND she is now on allegra for allergies.

At Duck

2010-05-08T13:42:00.000-04:00

Day at the Beach

2010-05-08T13:33:00.000-04:00

Killing time between doctor appointments at the park

2010-05-04T14:13:00.000-04:00

Geneticist appointment in the a.m. And PCP in the p.m. We got lucky and spent a great 45 minutes enjoying the sun and beautiful weather.
There's a newer better Microarray test that shows the bands of genes on a chromosome up to 2,000,000. It's called the SNP (pronounced snip) Microarray. The last test Sadie had a year and a half ago was the CGH Microarray, which showed up to 1,000 bands.
This is so important because genes control more than just hair and eye color, they also control, block, and communicate (epigenetics) with tumor receptors, cancer, other medical issues that might come up. Knowing which genes are missing, in Sadie's case, will help us keep a close eye on any potential medical issues. We know that Sadie is missing the gene that suppresses bladder tumors. So we will monitor her bladder.
Etc etc etc....
Sent from my Verizon Wireless BlackBerry

Pool

2010-04-28T14:53:00.000-04:00

All wet, all dressed, in the pool!
Sent from my Verizon Wireless BlackBerry

School

2010-04-27T20:11:00.000-04:00

I was responding to a question about preschool to Kindergarten. I
figured I might post this, especially after writting it down...this
was her path from private inclusion to now public "reverse
mainstreaming" (inclusion)

Well, Sadie had a wonderful experience at All Saints in the 2s class
and the director Dee was very open to having inclusion. However
wanting inclusion and having teachers willing to teach it, well that's
a whole different set of issues.
Sadie was in the 2s from Jan to May 2008. When she started in Sept
2008 in the next group up, one of the teachers actually refused to
teach in the same room as Sadie. She very bluntly stated that children
like Sadie belong in a special ed self contained classroom. We were
shocked and beyond belief that the director stood for that behavior,
especially when she told us she wanted Sadie at her school. The
director moved the teacher to another classroom and we continued
there. Sadly, the other teachers let Sadie play alone while they
engaged the other students. They even went as far to tell us that we
should only bring Sadie to school in the morning after she had a BM.
As if we really had control over that!
Ultimately, we moved her out of All-Saints at the end of November '08
and she started self contained at JBDey. Jan-June '09. We felt like
they were good enough, but still not the environment we wanted. That
drove me to look in to other preschool inclusion options. Donna Robel,
along with Susie OConnell met with the VB special ed dept. And
ultimately they were working on a pilot "reverse mainstreaming class"
modeled after Chesapeake.
Now, Sadie is at Birdneck, with the most amazing teachers in an
inclusion class, 6 sp ed and 6 typical.
My advice is to push for another year of preschool. How old is your
child, birthday? As long as they are 5, they should be able to go to
preschool. You might do some research and see if you can call an IEP
meeting (in writing). See what the team recommends, try to stand your
ground, find all your options!
Maybe someone who knows the answer about the age allowed in preschool
can respond!

--
Sent from my mobile device

Lisa

Sadie's Blog: http://sadie8p23point3.blogspot.com/

Shelbi's Blog: http://babybeachgirl.blogspot.com/

Sadie's school

2010-04-27T20:06:00.000-04:00

--
Sent from my mobile device

Lisa

Sadie's Blog: http://sadie8p23point3.blogspot.com/

Shelbi's Blog: http://babybeachgirl.blogspot.com/

Adjectives

2010-04-25T19:48:00.002-04:00

What adjectives would you say describes this photo?

R-word

2010-04-25T19:45:00.003-04:00

So a drunk stranger on a bike yelled a R-word joke as he passed our street. Some might say don't be so sensitive, others might say wouldn't it hurt you if you have an intellectually disabled daughter, who is the most loving, beautiful, innocent little child. Did you know that she didn't choose her intellect, did you know that people are injured, or perhaps people grow old and can't remember, perhaps you are still young and when you do something silly...you say that word. Do you mean it positively? How about saying a joke about the most vulnerable people, who are the most loving. I'm just saying...maybe you should think twice...
Sent from my Verizon Wireless BlackBerry

Back Yard

2010-04-22T17:06:00.000-04:00

So to sign back yard, you throw your thumb over your shoulder and then wave your flat hand parallel to the ground...back yard...well anyway, we all love spending the afternoons on the deck, playing in the sand, swinging on the swing, and just simply hanging out. We are glad to be home!
We came home from the splint clinic at 330, Sadie was fitted for Polly Wogs, (aka shoe inserts) also made by Cascade the same company that makes AFOs. Pretty neat concept, and I don't have to buy anymore cheap ones from the pharmacy! Plus insurance pays for it and that's aways a bonus!
I love sunny afternoons when it's in the low 70s.
Sent from my Verizon Wireless BlackBerry

Dinner

2010-04-20T18:42:00.000-04:00

Looking guilty after she dumped a cup of cooked rice all over her the table and put a handful down her dress...so cute anyway. Thank goodness for the dog!
Sent from my Verizon Wireless BlackBerry

Tree

2010-04-09T10:40:00.000-04:00

You can see how big the top of the tree is compared to the fence and bike in the background.
Sent from my Verizon Wireless BlackBerry

tree

2010-04-09T08:33:00.002-04:00

Ironically, as I pressed the send button on that last blog post, thetop of our tree fell half way down the tree and scared the crap outta me! Tree guys came out to take the huge piece out this afternoon.Having the whole tree removed next week!

Tree

2010-04-08T23:29:00.000-04:00

Sent from my Verizon Wireless BlackBerry

terrible 2s

2010-04-08T14:37:00.001-04:00

So, I took Sadie to the doctor this morning after feeling whole heartedly that she was suffering from something...an ear infection, sore throat, sinuses, allergies, something. She was off the charts fussy yesterday and this morning had a complete meltdown over nothing. She cried uncontrolably and without me being able to sooth her for over an hour. After her tears and mine; and seeing Shelbi standing there looking at both of us like we are crazy, I called the doctor and made an appointment. I was sure she'd find something. Afterall, Shelbi is on an antibiotic for an ear and sinus infection, I've also been on amoxicillin for the same. It seemed obvious that Sadie probably had the same.

After a thorough evaluation, she is a completely healthy child. The conclusion....Sadie is developmentally at 24-28months old..."Terrible Twos."

After pointing out that I've had a perfectly tempered loving child for the past 5 years and that I pretty much avoided (so far) the 2-3 year old temper tantrums with Shelbi, that the conclusion is that Sadie is struggling to tell us what she wants and then compounded by her disablilites...she is having tantrums.

Well this got me thinking on the way home, as I was debated to drink a beer with lunch or take a "pill" instead....that if Sadie has been on the 50%-60% developomental track for the past 5 years....Does that lead me to conclude she might possibly be in the terrible 2's -3's stage for 2-3 years???????? oh my gosh the thought of that really makes me want medication. That might be an overstatement because I'm pretty level headed when handling Sadie. My husband; on the other hand, well I kinda lose my head with him =)

Well, we are home now and as I type this post, Sadie is running around the deck soaking wet in a t-shirt and pajama pants (without a diaper) playing in the 6 foot plastic pool filled about 2 inches with cold water.....AND she is happy as can be and seems to be for now at least, back to her normal self. Thank Goodness.

Oh, Shelbi when to Granny's today for some quiet one on one without Sadie. She deserves a break too. I need to always remember that.

Sadie's Birthday

2010-04-03T20:41:00.000-04:00

Weight

2010-04-01T13:51:00.001-04:00

Sadies lost weight. Back to pushing food
Sent from my Verizon Wireless BlackBerry

Kindergarten

2010-03-28T09:39:00.001-04:00

I was quick to jump all over the idea of keeping Sadie in special ed preschool one more year. She should start Kindergarten in September, but she is making so much progress in the Special Education Preschool "Reverse Mainstreaming" Inclusion class. Sadie's class has 6 special ed students and 6 regular ed students. She has really picked up on hand holding, following simple directions, and her receptive language has exploded. She will even push her arm through the sleeve of her shirt when I hold the shirt open for her. She also lifts her leg up to put it in her pants when we stand behind her and support her. She even took her coat off one day last week when we came home and put it next to the closet. Although she requires a lot of prompting, she is at least responding to one step directions.

She is such a social little girl and we are so thankful that the school system offered this opportunity for her to be with her peers in an inclusive environment. Kindergarten is such a big transition for any child, but more especially for a child with special needs. The teacher said she'd probably be in a self contained class if she went into Kindergarten. I hope she can always be included with all children, but I also know that sometime what we want isn't always what's best.

While, I did jump all over the idea of her being in preschool one more year, it really hit home for me when I got the call last week for her tri-annual evaluation for special education services in preparation for Kindergarten. I told the coordinator that we decided to hold her back and she confirmed this decision with the teachers. And so, next week we with meet with everyone again for her 3 year evaluation of services, and we will tell them how happy we are that Sadie is in inclusion. With a heavy heart, I know my daughter will stay back instead of moving on like her same age regular ed peers I know it's what's best, but it is just another jab to our life that we live in Holland, NOT Italy.

Spring

2010-03-20T15:55:00.000-04:00

We've been enjoying this beautiful spring day!
Sent from my Verizon Wireless BlackBerry

Busy day!

2010-03-12T15:43:00.000-05:00

Sent from my Verizon Wireless BlackBerry

New stroller

2010-03-11T14:50:00.000-05:00

Sadie got her new Maclaren stroller last week and today was the perfect day to walk on the boardwalk. Of course, Shelbi rode her tricycle too! (I was trying to wear her out so she'd take a good nap heee heee)
Sent from my Verizon Wireless BlackBerry