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

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... backpacks, 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 meet 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 called hypoplasia (http://www.identalhub.com/article_enamel-hypoplasia-370.aspx) essentially meaning they came in missing enamel. Since she won't still 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, 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 knows 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 to 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 and even watching TV for a few minutes.   She didn't try to flip any plates over, and she loved the spinach dip and crackers.  She happily grabbed handfuls of dip.
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

cataracts

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 in June 2007 (I think it's crazy when your kid has been under so many times that you can't remember what happened when anymore).

First Bus ride

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 bus vest, 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

Yep still making her sister ride along. Ha!

Siblings

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

WHY?

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

On Friday we drove with the family to Escape the effects and dangers of Hurricane Irene. I think we made a good choice, especially living so close to the water and they were predicting Irene to be a category 4 hurricane.  Storm Surge is 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

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...

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 Virginia Zoo event in the evening.  A full day ahead, I had no idea our day would be so rewarding and exciting.

Eager to get there on time to see our 7 year old friend surf, we started our 10 min walk to the beach. We hustled to the beach and walked to the Team Hoyt Tent , telling the volunteers we were there to watch, but weren't participating in Surfers Healing.

Immediately, I saw a friend who said the surfers will take some of the extra kids out to surf if there's time. 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 to watch and hang out, and the next I'm scrambling to get my camera out to take photos.

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.  It was one of the most amazing events to witness. 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 waters edge with the volunteers lining the coast to help, watching as the surfers in orange rash guards paddled out to the break and sat calmly on their boards, while children with disabilities lay happily on their stomachs protected by a team of passionate surfers.  Each hoping to give a child with a disability an experience they would always remember.

Watching from the water's edge, it looked calm and peaceful.  Living so close to the beach all my life, I have never surfed, but I felt absorbed by the moment and emotional.  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 strength, as he pulled Sadie up with one hand as they were riding the wave.  When he lifted her up, she tucked her feet under her and didn't put her feet on the board.  He was able to hold her in the air.

In the end, she was given a medal, and her family a moment to feel grateful and joy for the memories that this day brought to us.

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!

Another missing tooth

Sadie eating her first ice cream cone

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

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

the retard word strikes my heart again.

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

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?

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

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

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

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

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

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

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://belovedmonsterandme.blogspot.com/

http://schuylersmonster.blogspot.com/

Community

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

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....

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

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

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.

Private

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

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.

 

Sick

I'm not sure what's worse... knowing your child is getting sick by the first signs and symptoms or fearing how bad it will be.  Either way, watching, anticipating, wondering how she feels, it's a sickening feeling seeing her stop eating and sleeping 3 hours in the afternoon when she never takes a nap.  Or hearing the first sounds of a gag, that you know are about to turn into throw up and wonder how close I am to a bucket, the sink, or hard floor that will be easy to clean up.  Because I've cleaned up throw up more times than I can count and don't event find myself repulsed by it anymore.  Or worse feeling relief that your other child who is now 5 years old, can at least sit and take in the experience with some understanding, and even lends a helping hand by brushing her sister's hair out of her face.

Hoping for a restful night tonight and that this little bug gets out of our house quickly.