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."