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Sunday, August 26, 2012

Funny

Okay most of the time I don't post all the the funny things Ian does....he really does not realize how funny he is...so I am going to start trying to remember some of the things he does....

We are sitting watching TV and he has decided he wants to scare Brian...this is how it goes:

Ian "Daddy?" "Oh Daddy?"
Brian "Yes?"
Ian "AAAHHH"
Brian just looks at Ian...like what are you doing?
Ian "Daddy?" "Oh Daddy?"
Brian "Yes?"
Ian "AAAHHH" "I'm trying to scare you, so scream like you mean it."
Brian "OK"
Ian "AAAHHH"
Brian screams like he means it and Ian has the best grin on his face...
PRICELESS.

Saturday, August 25, 2012

The Seven Habits of Highly Effective People Applied to Special Need Parents

I was reading an article on Stephen Covey's "The Seven Habits of Highly Effective People" applied to special needs parents and found it interesting.

Be Proactive
This should speak volumes to parents with special needs children. Be proactive; recognize that you are "response-able" to help make a better life for your child. It is most definite that you will probably have to do things outside of the normal. Translation: think outside the box.

Begin with the end in mind.
This is based on imagination. What kind of life do you envision for your child as an adult? Imagine them going to college, living independently, having a social life. Imagine a great, world changing....and then see every detail through to the end.

Put first things first.
The third habit reminds people that "to live a more balanced existence, you have to recognize that not doing everything that comes along is okay." Life management -- it is okay to not do everything that comes along. Set priorities for the "day to day" and long term, so you can live a more balanced life.

Think win-win.
The phrase "win-win" may be ubiquitous today, but it's likely popularity came from Covey's fourth habit, which means "agreements or solutions are mutually beneficial and satisfying." Think "Win-Win" every time you are negotiating. Which can be almost daily when advocating on your child's behalf. Keep the "win-win" habit in mind when working towards solutions or agreements that will be both mutually beneficial and satisfying.

Seek first to understand, then to be understood.
Seek first to understand, then to be understood. This habit can be used in all areas of our children's lives.  We need to become good listeners to our children, which may require more intent observation to their behaviors, schedules and activities in order to understand and respond appropriately, not just respond! This habit encourages helping our children to be understood better in their daily lives.

Synergize
"Synergize" assemble and build a winning and diverse team of all-stars Choose, not only, the right doctors, therapists, teachers, aides, tutors, and coaches, but also, family and friends that will be effective in helping your child reach their potential.

Sharpen the saw

Sharpen the saw...you are your child's best advocate. You must find ways to preserve, enhance and renew yourself on a daily basis. Without you where will your child be?

Some of these are definitely easier then others...some come more naturally then others...but then isn't that just part of life as well as any relationship one may have. I am going to keep these habits in mind as much as possible as I go about my days.  

Sunday, August 19, 2012

Week of MD appointments....

That is what last week was....week of MD appointments. We started off the week with the orthopedists. Brian and I were very surprised to learn that Ian's scoliosis had not changed. We both thought it had. We were not surprised to learn that Ian needed a new back brace, it had been getting tighter around his stomach. After his appointment, Brian decided to drive over to the orthopedic appliance store (we could not remember the name of it so driving over was the best we could do) and at least figured we could make an appointment then if they could not fit him in.  We got lucky they were able to fit him in....wait and here is the pattern he picked for his new TLSO (thoraco-lumbo-sacral-orthosis). 
This one is better compared to the one he currently has....
I guess Ian decided to tone it down a little bit...now we wait and go back in a few weeks to get fitted.

Our next appointment was a with a urologists. We were not sure what to expect with this appointment, however, it went well. We were basically looking for different ways to take Ian to the bathroom. For those of you who know him....he says "I am a boy, I stand to go." Well that is not so easy to do all of the time. So what we were told...pretty much to let him stand, try to get him to sit or use a urinal. So we will continue to adapt as best as we can with this given Ian's determination to "stand".

Next was the pulmonologist; this appointment is the one that is going to bring the most changes to our normal. We got his sleep study results back from a few weeks ago....Ian has mild sleep apnea. We knew this would eventually happen and that Ian would need to start either BiPap or CPap...we should know by the end of the week which one he will be on. He will need to be on this when he sleeps. While we were at the MD, the fitted Ian for the mask he will need for the machine. Another sleep study will need to be done in order to determine the parameters the machine will be on....this appointment was not a surprise for us. We learned sometime ago that Ian would eventually end up on either one of these machines for respiratory support, we just did not know when.

So now we wait to get the new TLSO and to find out if BiPap or CPap will be the winner.

One more week of summer vacation and the kids go back to school, we are all ready for the school routine to come back into our home.



Thursday, August 16, 2012

Casey Cares and The Ravens

Casey Cares Foundation....and the Baltimore Ravens.....
http://www.caseycaresfoundation.org/index.cfm?page=news&id=134


Waiting for the players to come say hi and sign the football and flag we brought with us.             


 Just some of the players who came over to day hi, sign our stuff and take pictures with us.



 Even Brian had to get one taken.
 Meet Casey from Casey Cares....she is wonderful...
And here is Becca with the football and all the signatures....and tomorrow night we get to go see the Ravens play Detroit Lions....bring it on....

Bath Chair Update

Many thanks to Tara for starting the petition, to everyone who signed it, and for all the wonderful support from near and far...so what is going on with the bath chair...to make a long story short...when we first ordered a bath chair for Ian we ordered one which could also be used as a transfer chair, however, with this chair in the bathroom, we could not move around to bath Ian...and he was not even in the chair. So we were told by the vendor they would take care of it and order us a chair (not one to be used as a transfer chair as well). With the whole denial process going on Brian and I started to wonder how the bath chair we had cost over $2,000...we did a little bit of research on line and realized we were being charged for the original bath chair. We learned some other interesting things which have been resolved with the vendor and BCBS...the vendor is now submitting a claim to BCBS for the chair we do have....we are still expecting for the chair to be denied as it is considered a convenience item. So the bath chair saga continues but until we get the denial for the correct chair we have to wait...

Tuesday, August 7, 2012

MY SPECIAL DAUGHTER (AND HER SPECIAL BROTHER)

I was going through some paperwork and found this...I wanted to share it.

MY SPECIAL DAUGHTER (AND HER SPECIAL BROTHER)

My son, Jacob, believes that Disneyland is the happiest place on earth. For my daughter, Shira, it may or may not be a happy place, but Disneyland is certainly the place where she is happiest to be Jacob's sister. Because Jacob is autistic, we don't have to wait in line to enjoy any of the rides. Instead, we flash his IEP (Independent Education Plan, given by the public school system and attesting to his condition), Disney bestows a VIP pass on Jacob, we skip the line and get stared at by all the other guests. As we breeze onto the ride, Shira beaming, I routinely overhear people mumbling,

"What's so special about them?"
What is so special indeed?

In the language of our age, our son is "special" and our daughter is "typical." Ten years earlier, he would have been "disabled" and she, "normal." A decade passes, the compass shifts, the language moves. But having a special child often doesn't feel special. It feels hard, burdensome, relentless, a joke. When our twins were born, we had dreams of them as inseparable, a playmate always at the ready. We dreamed of their always having an intense connection with someone who would understand them on an intuitive level. Those dreams have withered, scorched in an inferno of special therapies, medications, procedures, and behaviors. Dare I cling to the hope that Shira will feel a connection to Jacob when they are grown? Will she make him a loving presence in her heart and her life?

Jacob is "special," and that will be Shira's burden throughout her life. Should any child have to mature in the shadow of that additional responsibility?  Jacob may be special, but Shira isn't typical, which is fortunate; she can't afford to be.
  • At three years old, Shira wanted to join me in greeting congregants arriving at Rosh Ha-Shanah services. I told her she could pick her own clothes, so she picked two items that expressed the fullness of her own unique personality: her Cinderella ballroom gown, and her arba knafot underneath (complete with tzitzit hanging out below). Thus attired, she reached up and shook hundreds of hands, wishing them a smiling "Shanah Tovah!" That is no typical child.
  • As a child of four, Shira found out that people die. During one of several conversations about mortality, Shira informed me that, when the time came, she would hold my hand and die with me. When I told her that I hoped she would live for many, many years after I did, she burst into tears. "Abba, I don't want to live if you aren't living!" That's not typical either.
  • At age seven, still a white belt in karate, Shira's instructor gave her a wooden board by mistake (only the higher belts get their own boards.) When her teacher tried to retrieve it, Shira was so adamant that he relented. Shira smashed it in two with her first kick.
Shira knows who she is, feels passionately, and lives without restraint. I can't help but suspect that, in part, she is so special because she has a "special" brother.

Once Elana (my wife/her mother) was reading Shira Mori's Story, a wonderful book about an autistic boy written by his wise eleven-year-old brother. Shira began to cry when we got to the parent's loving decision to place their autistic child with a foster family who could provide him with the care he needed. "We won't ever do that to Jacob, we will?" She cried, horrified at the possibility. We explained that each family was different, and had different needs. Jacob would stay with us.

Shira, in the middle of nothing in particular, announces that it is unfair that she has an autistic brother when none of her friends do. She plugs both ears when Jacob makes his nonsense sounds, his "silly talk." She rolls her eyes in disgust when her emerges from the bathroom with his pants still around his ankles. She deliberately picks the video that she knows will make him scream, cry, and fling himself to the ground.

But Shira is also the one attracted to friends who are distinctive and unusual children. She is the sister who hands Jacob half her french fries, without his asking, because she knows he likes them. Or her leftover brownies, Shira is the first to try to assure him that the hotel room is safe and secure, when it feels unknown and threatening to him. And if we discuss some future plan without mentioning Jacob, Shira is the one to insist, "Jacob too!"

Raising a child with special needs is challenge enough. But raising that child's sibling is a task requiring no less consciousness, planning, and consideration. In the press of an autistic meltdown, Shira's more subtle needs can easily appear less pressing. Because she is more verbal, her acting like a seven-year-old feels petulance when Jacob's problems rise to the surface. And, finally, because Jacob requires constant attention and assistance, it's easy to let Shira fade into the background. Her very sweetness, understanding, and sympathy make it easier to give her short shrift.

For all that, it is also true that having to make room for an autistic brother, mentally, emotionally, and in the prosaic details of her family, Shira has developed a depth and a caring that takes my breath away. Shira is a miracle in our lives. And like all miracles, she defies simple understanding, eludes neat categorization. There is no one quite like her. It turns out that she is, in her own way, special too. And isn't that typical?



(Rabbi Bradley Shavit Artson is the Dean of the Ziegler School of Rabbinic Studies at American Jewish University, where he is Vice President. He is the author of The Bedside Torah: Wisdom, Dreams, & Visions and Jewish Answers to Real-Life Questions.)


Sunday, August 5, 2012

Some recent pictures ...

Here are some shots that I love and wanted to share. I hope you enjoy them as much as I do.