Still Fighting....

Sorry for the lack of posts, again. Blogger locked me out!

Well, the fight still continues for the children on the Medically Fragile and Technology Dependent children's Waiver (MFTD) in IL. Last week, the State legislature passed SB 2840. The Governor is set to sign it in to law sometime this week.

This bill effectively kicked many of the children on the MFTD waiver off, but instituting income caps to qualify. The entire point of the waiver is to WAIVE income requirements for services. Those who are left to qualify are going to have to pay between 5 and 20% of our income - anywhere from $400 to $1200 per month on TOP of insurance premiums, out of pocket costs, and regular bills.

The result of all of this is that many families are going to have to chose between going bankrupt, divorcing, quiting jobs, taking major pay cuts, or putting their children in hospitals. All of this is blatantly illegal under the Olmstead ruling. In a nutshell, The Supreme Court ruled that if services were available in a community setting, and the person WANTS to be in the community, it is illegal to force institutionalization on them. A good friend has written a great article explaining Olmstead for Complex Child Magazine here.


Our next step now is to convince a Senator to introduce a rider bill. This is essentially a separate bill that will say that any changes to the MFTD Waiver in SB 2840 is null and void. So far, we have had no luck.

Failing that, our last gasp are lawsuits. It is pretty cut and dried that we would win our lawsuits just on the Olmstead violations alone, however, the State of Illinois is currently being investigated by the Justice Department for disregarding rulings in several other Olmsteasd cases. They are currently in contempt of court and have no intention of following court orders.

We need help getting the word out to media about the back room deals and sacrificing of these children and their families, for others' personal agendas and biases. If you have any National Media contacts, please send them our way.

To educate yourselves more, please visit www.saveMFTDWaiver.com

One note here, there are MANY States poised to make the same cuts. California is well on the way. If nothing happens to the State of Illinois, be prepared for YOUR state to act as well.

Amazing and Grateful......

Hello all! So much to report today.

If you remember from our last post, there was a bit of drama going on in the Special Needs Community in the last few weeks. Serious drama - that involves missing awards, money, and the police.

Par for the course, when things get tough, Special Needs parents and friends get tougher!  If you remember, I told in the last post how several parents and some of their friends were trying to figure out a way to get the families who "won" that giveaway, their iPads. Enter Mission: iPossible!

We are grateful and humbled to announce that Christopher was selected to receive the FIRST iPad that they were able to obtain!!!  It has been sooooooo hard to keep it a secret this week. We are beyond thrilled to have received the iPad. Christopher is not too sure what to make of it, but was VERY happy to find the entire 1st season of Blue's Clues installed as a reward. LOL! As I have said to part of the Mission: iPossible Team, thank you just doesn't seem  enough.

I know that these folks will work hard to try to verify the original winners and obtain iPads for all. I know they are going over and above to make SURE that people know they are on the up and up. I HOPE that they are all able to have sweet, sweet dreams knowing that they have done God's work here. We also want to thank the other WINNERS for their prayers and gracious comments throughout all of this. Many asked or commented how happy they were that Christopher was the first awardee.  That means the world to us.  It also means that we will be helping to do what we can to make sure the others get this chance as well!!!!  :)

I know that sounds crazy, but we really had no other way to obtain an iPad. Christopher's will be used more as a communication device, to help with homeschooling, and to record therapy and doctor's visits without having to drag a bunch of paraphanalia along. This isn't the be all, end all to homeschooling or communication - but it frees up DME money so that we can get things like a stander or gait trainer.

As we stated in an e-mail to Mission: iPossible Team, Christopher has already shown that he knows more than he has previously let on. I should back up a bit for the new folks here. Christopher, in addition to Down syndrome, has had one or more strokes, heart defect, Infantile Spasms, and has crashed many times ending up on the vent. All of this has caused a considerable amount of brain damage - between 40% and 60%  - according to those in the "know".  We have been told that he SHOULD be in a persistent vegetative state because of the way his brain looks. Obviously, he's not. We are in uncharted waters here. Christopher is smart (I'm not just saying this because I am his mother. Ha! Ha!). He is smart enough to know NOT to let us know everything he knows, because it means more work for him!  The iPad helps us break through that barrier.

We also took the iPad along to therapy and his neurologist appointments today. It kept him entertained (doing "school"), served as a camera and video camera, AND his neurologist was so impressed! It was the closest I have ever seen him to crying. :)

So once again - THANK YOU, THANK YOU, THANK YOU!!!  If you would like to follow along, or if you would like to see how YOU can help, head on over the the Mission: iPossible blog.  You won't be sorry that you get involved in this one. :)


Keep an eye out for more pictures and videos of Christopher using his iPad and other devices!!!  Thanks!

Hugs!

Steph and Christopher

BTW - This gift means even more to us know that it came from a firefighting family!!!! Pretty much everybody on my Mom's side of the family have been firefighters. My Grandpa was Assistant Chief in our town. Thank you again!

That's All Folks!

If you look a few posts back, you will see that we were excited to announce that Christopher had won an iPad2 and $500 worth of apps. If have been anywhere in the Special Needs community lately, you know that the worst kept secret around is that this entire thing was a mess.

Mike, the author over at Marissa's Bunny, was the mastermind behind the whole thing. Frankly, I'm too tired to speculate WHY he did it, or the ins and outs of the whole thing. I am leaving the link to Marissa's Bunny over on the side of the page. You can go and read if you are interested.

What we DO know is that this person had no business collecting money on any body's behalf - let alone a charity that ended up not existing. We also know that at least 40 Special Needs families have been affected by this.

Forty families, like us, have planned therapy services, education plans, and even the chance to hear what their child is thinking on getting these devices. For us, we planned on using the iPad instead of purchasing a communication device that costs between $6000 and $10,000, depending on accessories and software. We have a limited amount that we can spend on Durable Medical Equipment per year. Those things include standers, AFO's, Gait Trainers, Communication Devices, Bath Chairs, Etc.

Because Christopher is doing so well in his rehab after his surgery, we have a LOT of equipment that is needed. Equipment that we never thought he would use. Now we are faced with deciding what we are going to do this year - get him standing and potentially walking? Potty training? New Special Needs Car seat? or allow him to communicate on his own for the first time in 7 years?

What ever happens, Christopher will get what he needs in the end - legally! We'll figure it out and move on.

As for him, there is an investigation on-going. We will let the authorities do what they are going to do. I have to assume that his life is going to be not very pleasant in the near future. He will be looking over his shoulder for awhile yet.

If you want to read more about it, you can go on over to Love That Max. Be sure to read the comments section, as it includes comments from Mike himself and a copy of the last e-mail he just sent trying to distance himself from the situation and confirming that there are no iPads.

If anybody out there reading this and was one of the original winners of the iPad, please head over to our friend Heather's blog, Little Wonders. She and a few others are going to try to get these kids what they were promised (the iPads), but they need verification of the winners.  Even THAT has come under question.

This has been going on for many weeks. I have gone back and forth from being mad to hopeful, to suspicious, now just plain disgusted. There are lessons here for all, and opportunity for many others. It is still a sad day in the Special Needs community to think that one of our own (if he IS the parent of Marissa), has targeted our own community for a scam and used his kids to do it.

Stephanie

Can I have your attention????

As the Mom of a child with Special Needs, I wear lots of hats. Nurse, Mommy, therapist, teacher, insurance agent, travel agent, and the biggest job I have is ADVOCATE. I don't just advocate for MY son, I advocate for all people with special needs.

One of the absolute BEST campaigns is Tim Shriver's Special Olympics "Spread the Word to End the Word" Campaign. The word we are talking about?  Retard or retarded.

You have all heard people use it, or you might have yourself.  "Oh that is so retarded"  "You are SUCH a retard!"  Yeah - we get that you think you are joking. The thing is - it's not funny.  You are using those words as a slam - as a putdown. Your aim is to bring down somebody to the level that you THINK my son lives at. The only one you are bringing down is yourself.  DOn't quote the dictionary to me. Don't site your right to free speech. To paraphrase Tim Shriver, you have the right to make a fool of yourself. We also have the right to tell you HOW those words affect us.

Don't believe me?  Maybe this will help:





Steph

Win a free iPad!

Go NOW over to Marissa's Bunny blog and enter for your chance to win a free iPad!

If you have never been, Marissa's Bunny is a blog by a Dad and is dedicated to his daughter who has infatile spasms.

Marissa's Dad is strarting a foundation, also called Marissa's Bunny Foundation. This is a merrit based give away, and ANY special needs child can benfit. Dad's bosses have genrously donated 5 iPads to give away (awesome!). 

So run on over and leave a comment and/or send an e-mail.  Good luck!!!

Hugs!~

Steph

Like Pancakes???????

Like pancakes?  Want an easy way to help raise money for Children's Miracle Network Hospitals? Looking for something new to add to your feeding therapy sessions?  Here is your chance!!! 

Stop by any IHOP on March 1 for a FREE short stack!  Load up the kids and hit the IHOP!!!!!  Enjoy!~

You can also sign up to receive a wake-up/reminder call on March 1 from your favorite celebrity!  Yea!
http://www.ihoppancakeday.com/

(From the IHOP website)

About National Pancake Day


March 1, 2011

Since beginning its National Pancake Day celebration in 2006, IHOP has raised more than $5.35 million to support charities in the communities in which it operates. While IHOP's National Pancake Day typically takes place on Shrove Tuesday, this year, the company will host its free pancake event one week earlier on Tuesday, March 1 to build buzz and excitement prior to Shrove Tuesday. With your help, we hope to raise $2.3 million for Children's Miracle Network Hospitals and other local charities!



Known also as Fat Tuesday or Mardi Gras, National Pancake Day dates back several centuries to when the English prepped for fasting during Lent. Strict rules prohibited the eating of all dairy products during Lent, so pancakes were made to use up the supply of eggs, milk, butter and other dairy products...hence the name Pancake Tuesday or Shrove Tuesday

 
 
~Steph

Mama's New Gig...

A couple of weeks ago, I was approached about writting a couple of times a month for another blog. Today was my first post.

This blog is really more than just a blog.  There are many great folks who will be contributing. I look forward to learning from, and sharing with them all! :)

If you get a minute, please stop by Living With Special Needs and show us some love!

Thanks!

Steph

How long?

For our friends.....

Get out the tissues!  Just wanted to share a video that I came across on youtube.  This one goes out to all of my Special Needs parents.  This video doesn't just represent the race that THIS father & son are running.....we are all running our OWN version.  You don't have to physically run an Ironman to understand that is what we, as SN parents are doing everyday.  Pay attention to the end! You won't be sorry!  Hugs to all.  :)

Steph

P.S. We will get back to more regular posting soon.  Christopher's surgery is scheduled for July 26th & we just got the house officially up for sale.  Lots of stuff coming...:)

Blog-ortunity!

Hey folks!  For those of you who have your own blogs, Dave at Rolling Around in My Head is hosting the Disability Blog Carnival for the month of June!!!!  Stop by and read the instructions here.  Leave him a comment with a link to YOUR blog, siting your favorite entry regarding disabilites. 

Have fun!

Steph

World Down Syndrome Day

Lots has happened since our last post....Lil Man had another series of seizures and was hospitalized.  So far, he has not had anymore.  Adjusted his meds agan and had a new EEG.  Haven't heard the results, but I'm pretty sure that nothing has changed or his neuro would have called us.

Last week, Gamma (a.k.a. my Mom) went in to the ER with trouble breathing.  Four days, an angioplasty, two stents, and an appointment with Cardiac Rehab later - she is home. 

Sunday, March 21 (3-21) is World Down Syndrome Day.  People all over the world will be celebrating our wonderful kiddos with a little something extra!  If you are so inclined, people all over the world will be releasing blue and yellow balloons at 4 p.m. your local time....

In the spirit of World Down Syndrome Day, I thought I would post some links for your enjoyment.  These came from a variety of resources including our local DSN newsletters:

The first few are for the locals - local being in Illinois.  Feel free to check them out even if you are not local:

HOISDA - Self Advocate Advisory Board:  The Heart of Illinois Down Syndrome Association Board of Directors approved the bylaws to provide for a Self-Advocate Advisory Board.  The purpose of the Advisory Board is to provide guidance and assistance to the Board of Directors  to promote awarenes of Down syndrome issues  and empower those with Down syndrome to  direct their own lives and achieve maximum independence.  The Self-Advocate Advisory Board accomplishes these directives by : Educating, Communicating, Sharing information and resources, Networking, Mentoring, Promoting respect and dignity, and Encouraging each other.  Please contact a Board Member if you are interested in an appointment to the Advisory Board.  http://www.hoisda.org/

The HEAT Program:  The Help Empower And Teach Program provides an opportunity for students to promote positive lifestyle choices among their peers.  They will focus on sexuality education and dating for the HOISDA group.  A seperate program will be offered simultaneously for parents.  The date of the presentation throught he Wellness Program at Bradley University is Thursday, April 15 from 7:00 to 8:00 p.m. at Bradley University.  You can learn more information about the HEAT program at http://www.Bradley.edu/campusorg/peered/

 Inclusive Practices in Early Childhood:  Sponsored by ProjectCHOICES - April 30, 2010, Grizzley Jack's Grand Bear Lodge, 2643 N. IL Route 178, Utica, IL 61373, Cost: $30 Professional, $10 Family Members, Questions : 630-629-0551

Family Matters Parent Training and Information Center (FMPTIC):  4Th Annual Family Conference: Resources and Inspriation for Adult Caregivers and Family Members of Children with Disabilites, Saturday, May 1, 2010 - For additional information contact: Deb Einhorn, Family Matters, 1-866-436-7842 x116 , deinhorn@fmptic.org  or Mary Smith, STARnet Regions I & III , 217-742-5252, mk-smith@wiu.edu

HOISDA /Advocates for Access Workshops - FMPTIC:
3-29-10  Removing Barriers and Building Bridges with Your School and Being Your Child's Advocate

4-26-10  Solving the Empowerment Puzzle for Youth with Disabilites

6-7-10  FAT City: (Fear, Anxiety, and Tension) Understanding Learning Disabilites

These workshops will be taught by the staff of FMPTIC.  All sessions are FREE  and a light meal will be provided.  Register at http://www.fmptic.org/  Time and Location: 5:30 - 8:30 p.m. at Advocates for Access CIL, 4450 N. Prospect Rd., Ste C8, Peoria Heights, IL 61616

Here is a little something for everyone!  Enjoy!

Self-Care: Why Parents of Children with Disabilites Must Nurture Themselves: From Disaboom:  http://tinyurl.com/ygxny6e

The "Other Child" with Special Needs: Understanding Siblings:  From Disaboom: http://tinyurl.com/yhqobwe

Positive Discipline for Children with Special Needs: From Disaboom:  http://www.tinyurl.com/ygstpz8

Canadian Down Syndrome Society: Lots of great information here http://www.cdss.ca/blog/information/general-parent-information/     Also a great section on Teaching Children with Down syndrome  http://www.cdss.ca/information/general-parent-information/teaching-children-with-down-syndrome-pdf.html

Think Beyond the Label:  Think Beyond the Label is committed to making the business case  for employing people with disabilites.  They are a partnership of health and human service agencies, and employment agencies with federal grants, coming together to build a uniform national infrastructure and approach that connects business to qualified candidates with disabilites.  The goal is simple: to raise awareness tha thiring people with disabilities makes good business sense.  Employes with disabilites have unique, competitively relevant knowledge and perspectives about work processes, bringing different perspectives to meeting work requirements and goals succesfully.  Hiring someone who " thinks outside the box" might be thinking too small when there's an oppoetunity to hire someone who lives outside the box.  http://www.thinkbeyondthelabel.com/

Bike-On America:  Offers adaptive trikes, bicycles, and handcycles.  Visit their site at http://www.bike-on.com/

Documenting Disparities in Obesity and Disability:  The recent FOCUS Technical Brief presents NIDRR-funded research highlighting the deparities inobesity experienced by youth and adults with disabilites.  Authors James H. Rimmer, PhD; Edward Wang, PhD; Kiyoshi Yamaki, PhD; and Brianne Davis, MPH conducted the research for the Disability and Rehabilitation Research Project (DRRP) "Reducing Obesity and Obesity-Related Secondary Conditions in Adolescents with Disabilites" (H133A060066), Center on Health Promotion for Persons with Disabilites, University of Illinois at Chicago.
Youth with Autism were 2.2 and 1.8 times more likely to be obese and overweight, while youth with Down syndrome were 3 times more likely to be obese and overweight compared with youth without disabilites.
The research shows that overweight and obese youth with cognitivie disabilites (Autism, Down syndrome, intellectual disability) had a significantly higher prevalence of high blood cholesterol, early maturation, and diabetes than youth with healthy weight.  The report can be found at:  http://www.ncddr.org/webcasts/webcast21.html

Buddy Cruise: Buddy Cruise is a unique conference for families of people with Down syndrome.  This year it is being held onboard Royal Caribbean's Monarch of the Seas.  They set sail July 19, 2010.  Time is running out to reserve your cabin for Buddy Cruise 2010! At this time there are a limited remaining that will hold more than 2 guests.  Call 1-877-BDY-CRUZ option #3 to reserve yours today. (other cabin options available)  Once your cabin is confirmed, don't forget to register online at http://www.buddycruise.com/    They have started to post sessions and events on our website, check often for updates. They ahave just confirmed Chris Burke from "Life Goes On". They are thrilled that he and his band mates, Joe and John , will be joining.

Take the Initiative - TTI at Western Illinois University:WIU has applied for a grant for a three phase integrated program to give individual with Down syndrome for the opportunity to be employable college students.  This program will allow students to take full advantage of all that a university campus offers, such as learning in and out of the classroom, access to technology, campus recreation programs, performing arts, preparing for a job and above all, a chance to realize their full and often underestimated potential.

Early Childhood Inclusion Training Resources: SpecialQuests's Preschool Inclusion Series videos and training sessions explore several aspects of including pre-school age children who have disabilities in programs and settings with their typically developing peers.  http://www.tinyurl.com/yc939nt

IEP Checklist App for iPhone:  Did you know there is a newly developed Individualized Education Program (IEP) Checklist iPhone application? The IEP is an individualized program designed to support the educational needs of school aged students with disabilites.  This new IEP app helps parents of students with special needs become better-informed advocates by making IEP information easier to access.  The IEP app is offered free of charge and is downloadable at iTunes. 

Down Syndrome Education International:  They are launching a series of online events presenting the current research activities of DSEI and their partners.  The live events are free to access online and by telephone for families, professionals, and scientists worldwide.
Over the past , developmental and educational research has increased what is known about the learning difficulties experienced by people with Down syndrome.  THis research has improvedteaching techniques and transformed education for many thousands of young people with Down syndrome today.  However, much remains to do.  Many improtant questions remain unanswered and many specific interventions have not been sufficiently evaluated.
Their series of online events will present our current research activites and discuss how they are working to answer critical questions about development and education for our children with Down syndrome.  http://blogs.downsed.org/downsed/2010/02/down-syndrome-research-free-webinars.html

QR Pharma Receives US Patent to Treat Down syndrome:  Radnor, Pa. -  QA Pharma Inc., a developer of novel ddrugs to treat Alzheimer's disease (AD), announced that it was issued a U.S. Patent No 7,625,942 a "Method of Treating Down syndrome" by the U.S. Patent and Trademark Office.  The '942 patent covers use of Posiphen and analogs to treat cognitive impairments associated with Down syndrome (DS).  This patent valuably expands upon the original Posiphen and analog patent that claims composition of matter and use of compounds to lower amyloid-precursor protein (APP) and thereby treat dementia and Alzheimer's disease. (Aricept?)

USF studies show link among Alzheimer's disease, Down syndrome, and artherosclerosis:  Nearly 20 years ago Huntington Potter kicked up a storm of controversy with the idea that Down syndrome and Alheimer's were the same disease. Now the evidence is in: He was right!

And that is not all.  Down syndrome, atery-clogging cardiovascular disease, and possibly even diabetes, appear to share a common disease mechanism with Alzheimer's disease.  Dr. Potter and colleagues at the Florida Alzheimer's Disease Research Center, USF Health Byrd Alzheimer's Institutes, recently reported.

Full article:  http://hscweb3.hsc.usf.edu/health/now/?p=9843

The studies' published papers can be found at:   http://health.usf.edu/nocms/publicaffairs/now/pdfs/PLoS1_Abisambra_Potter_1_1_10.pdf

http://health.usf.edu/nocms/publicaffairs/now/pdfs/MBC_Granic_Potter_Trisomy21_12_23_09.pdf


Hugs!

Steph

More Alike, Part II

In the last post, I listed posters and asked you to go vote for our kiddos.  Unfortunately, some sick individuals have taken it upon themselves to copy our kids posters and photoshop them with disgusting, filthy titles.  Lil Man's was one that was stolen.  I am currently working with the NDSC, the site administrator, and if neccessary law enforcement to deal with the situation.  In the mean time, I have pulled Lil Man's poster from the running.  Normally, I would not let this interfear with our lives, but some of the things posted are gross and threatening.  I will NOT allow his image to be used for that type of thing. 

I worried about this type of thing happening when I started this blog.  Luckily, the blog itself has not been targeted.  I have the link to the site where this is happening, but I am not going to post it here for two reasons: #1. I don't want these freaks to find our blog if it is not on their radar already, #2. I don't want them to get any more traffic.  You can e-mail me directly or contact me on FB if you want the direct link.  If you do, please send e-mails to the site administrator regarding this crap. 

For now, while you are out cruising the information superhighway, keep an eye out for unauthorized use of pictures of our kids.  These sickos seem to be targeting people with Down syndrome.

Thanks!  Hugs!

Steph

More Alike than Different...

OK folks, it is official....Lil Man has a poster at the More Alike than Different Campaign.  Please take a minute and go vote!  The top three vote getters will have their posters used for national promotions!  Lil Man is number 139.  We also have some friends there too!!!!!  Click on the posters below and it will take you to the site.  Thanks!!!!  Here is the link if those should not work  http://www.ndsccenter.org/?page_id=1992

Lil Man #139:

Sophia from Rejenerations & a local buddy from Champaign County Down Syndrome Network (look to the side for the link to their blog!) - #56

Addy - another blog friend Heflins link to the right - #11

And our local buddy Joey from Champaign County DSN - #21

We also have Larkin from Larkin's Place (on the Right) and our local Champaign County DSN - #113

And Mayson  - #4

Thanks for taking the time to vote!

Hugs!

Steph

Tell it like it is......

I have to say, when it first came out I was less than enthused about seeing this movie.  I couldn't stand Johnnie Knoxville & the whole Jack*$$ movie bit.....but when I found out the Special Olympics had consulted on this film - I finally agreed to watch it.  It is undoubetly one of my top ten!  If you haven't watched it yet, run, don't walk to get it.  Great actors who really show what life is like for people with special needs....  Be sure to stop the player in the sidebar to hear the message.

"Kick in the Gut...."

By now I am sure you have all heard Sarah Palin's reaction to the Family Guy show.  If not, you can read it Here.... I am not going to post a link, but if you feel so inclined, you can go to the Fox website and watch the entire episode online.   Now read the response by the woman who played the character Here and Here.- and the full email response Here. 

For those who are confused by my joy at her interview, let me say this - the episode of the Family Guy was, IMHO both rude, and empowering at the same time. The Stewie song was a little much, but way to go for potraying a person with DS who went out on a regular date, etc! In fact, I am almost more offended on how the brother is portrayed than the girl with DS....almost.

We lament the fact that people with disabilites are far too often portrayed as either the butt of a joke, or a tragic existance, or like a pet needing somebody else to care for and make decisions about....then when the opoortunity arrises where somebody with a disability it portrayed as somebody who can think for themselves, go out on dates with "typical" people, hell, even poke fun at others.....we swoop in convinced that the message was one of discrimination and that the people involved HAD to not have known what they were getting in to.....that they were somehow manipulated into taking such a stand!That they are incapable of thinking for themselves.

For the most part, the jabs that Palin is up in arms over were NOT about DS, they were NOT about Trig -  they were about Palin - Not TRIG - Sarah! Would it have been different if the actor/character involved did not have Down syndrome?  Probably. This would have never made a blip on the screen if it was a "typical" actress saying that her mother was Gov. of Alaska.  PALIN twisted it in to something else - then used it as an opportunity to speak for a group of people who she apparently deems too precious to stand up for themselves - therin lies the problem...

People with disabilities don't need people to speak FOR them - they need people to listen TO them when they speak!  Big difference, and one that is fluid and individual.  While some people with disabilites will probably always need advocates, they also need to learn to BE an advocate.  They need empowerment and the opportunity to advocate for themselves - they need enough respect to allow thier message to be heard, and the opportunity to present it - in short, they need to be treated as people first.  People with different likes and dislikes, abilites, hobbies, religions, races, and politial party affiliations.  People who are CAPABLE of letting you know their needs, wishes, hopes, and dreams - if only YOU have the courage to listen.

Sarah Palin decided that she would put herself out there as a "Disability Advocate", yet when given ample opportunity to stand up for people with Disabilities - she falls flat on her face.....Boy, she comes out swinging when she hears that somebody in the opposite political party has used the "R" word, but let somebody in her OWN party do it - one who has a National Radio Audience - and it is satire - a joke.  If you are going to be an advocate - you are either going to BE one or not.  The "R" word is no less offensive coming from my enenmy as it is from a family member!!!  Do you think that Trig is going to go to school one day and check voter registration cards before he decides if he is going to be upset at being called the "R" word?  Doubt it. Do you think he is going to appreciate being trotted out as the issue of the day every time Palin wants to attack somebody and can't figure out anything else to do it over?  Doubt it.

That whole situation typifies the attitude that Americans have towards people with disabilites, "Oh, I didn't mean it like THAT....Oh, it was a joke!"  Guess what?  I don't care how much money you make, what your job is, who your family is if you use the "R" word - you will get schooled!  Some more politely than others, but make no mistake, it will happen. 

Guess what else?  When/IF Lil Man gets to the point where he can do it himeself - HE will do it! 

A big part of our jobs as parents is to prepare our children to go out and be able to take care of themselves in the big, bad world.  Whether that be typic or special needs, the goal is still the same.  The journey may be just be different.  We do them no favors by allowing them to use their disability as an excuse for not doing all they are capable of....for example: just because Lil Man has had a rough time of it so far, doesn't mean he gets free rein to act like a spoiled brat....If he can throw his toys down the hallway, there is no reason he can't throw them in the toybox at the end of the day.  Just because he held still during an x-ray, doesn't mean that he should expect a gift for doing so.  If somebody or something is hurting him, doesn't mean he needs to lay there and take it until we figure it out.

Sure there are going to be disappointments, hurt feelings, chances lost - but those are all things that typical children need to experience as well.  I am not saying NEVER protect your child, just don't enable them to be dependent on you or somebody else for any more than they need to.  If we put our special needs children in a bubble - never allow them to get hurt feelings, never allow them to speak for themselves, never teach them to take care of themselves to the best of their abilites - then we are handicapping them come than whatever disability it is that they have.  They will NEVER figure out how to speak for themselves.  They will NEVER appreciate being happy if nothing bad ever happens!  And we, as parents, will NEVER get to appreciate the wonderful people our children have the potential of being.  We will never get to beam with pride that first time our child can speak up for themselves and remind somebody to speak TO them, not over them...

As for us, we have a long way to go to get there.  I am not fully sure where "There" is or if we are capable of doing it.  All I know is that I will do everything in my power to give Lil Man the opportunities he needs to grow - it is up to him after that......


Hugs!

Steph