Possibility Playground's Run, Walk, Roll will be held this Sunday, May 31st in Port Washington's Upper Lake Park.  Registration starts at 9:30 and the run starts at 11:00 a.m. 

Possibility Playground in Port Washington is the playground that I wish we had when Andrew was younger.  Roughly the size of a football field and the Milwaukee area's only fully universally accessible playground for kids of physical abilities, it is chock-full of adaptive swings, tunnels, slides, wall murals, bridges and sensory activities.  There are so many things to do that your kids will never want to leave and you can be relaxed because the playground is wheelchair and walker accessible.  Another great thing about this playground is that kids can play side-by-side with their non-disabled peers.  Volunteers are currently raising funds for handicap accessible restrooms and an interactive water feature.

For more information or to register online now, go to: info@possibilityplayground.org

Sometimes we don't mean what we say.  We have all said something hurtful without thinking and possibly hurt a friend's feelings in the process. Even President Obama said something he didn't mean.  It just slipped out - comparing his inept bowling to a Special Olympics moment was a moment that I am sure he would like to forget.  My son, who still thinks the president is a good guy - can't believe that a president could say such a thing.   Andrew has started talking about all of the things that he and his friends with disabilities CAN do to try to offset the president's gaffe.  Not a bad plan.  This is a good learning moment for everyone.  At the end of the day there was a lot of chatter for Special Olympics and people with disabilities.  From a PR standpoint what was bad for Obama was great for special needs.  Never have I seen so much press for special needs.   The point is that the slip-up was too easy and words do hurt, even if it wasn't meant as a diss on people with intellectual disabilities.   As an educated society, we should match our language with our growing acceptance and tolerance of physical and/or intellectual differences.  Now is the time to continue the conversation that President Obama inadvertantly started a few weeks ago.  Let's make it a pact to watch what we say and show respect for people with differences.  That is why I support the Special Olympics cause to stop the use of the "R" word.  It is another example of  a meaningless hurtful word.  Join Special Olympics Chairman, Tim Shriver and 34,090 people and sign the petition to stop the "R" word.  It is time to show RESPECT - that is a better "R" word, I think.

Wow.  Don't even know where to start.  As a mom of a chld with a disability, yesterday was..... surreal.  In fourteen years, I have never once seen this kind of dialog about special needs on the radio, TV, Facebook and of course, Twitter.  People were tweeting madly on the topic and Special Olympics was a key trend word.   I am grateful for the dialog.  Tim Shriver, the Director of Special Olympics said it best... words hurt.  Oh, yes they do and Obama's words stung the special needs community.   I think I actually winced.  ugh. It hurt me to think about kids who do Special Olympics, who may have heard the president on Leno or on the various media clips that were played yesterday.  Kids with special needs already know they are different.  They know it in the stares of others or more subversively, when the are ignored by their peers at school.  Society still has a ways to go towards tolerance and acceptance of differences.  and for some kids it is a struggle to find peace with that - with being different. 

Obama made a mistake and he has apologized.  

Keep the dialog open, talk to your kids about tolerance and different abilities. 

We all have them hanging around the house; old keyboards, monitors, power cords, hard drives and towers.  Independence First, in Milwaukee, can help you get rid of that old stuff and will recycle your compter equipment for free. Their IT experts will clean out, spruce-up and donate the equipment to people with disabilities who may not be able to afford them and who need them.  I can't imagine my life anymore without my computer and the internet.  It is how I am able to make a living, organize my expenses and stay in touch with old friends among many other things.   Now, imagine your life as someone who, for health and medical reasons, has a hard time leaving the house - that computer could be a lifeline to work and social connections.  To donate, contact Independence First at: 414-291-7520.

Check out the Fox 6 News story  on the Independence First Computer Recycling program.  At the Fox site, scroll down to Contact 6 Video stories and click on Computer Recycling. 

My March column, Empowered Parent, in Metroparent Magazine is about the importance of travel for our kids.  New experiences, sights, sounds and best of all family bonding time are all benefits of family travel. 

Here are a few ideas of my own and from friends with kids with special needs:

Want a family outing that's easy on the wallet and gives back to a good cause?  This Sunday, March 1st, the Admirals will play for the Macc Fund.  For three bucks per ticket your family can watch the Admirals take on the Houston Aeros. 

Amazon has introduced the new Kindle 2, available on February 24th, which is a wireless reading device that can download books, newspapers or blogs in less than 60 seconds.  This could be a very big deal for the disability community and for my son.  The new Kindle has text to speech technology and the capacity to enlarge text which could be a huge help for people with vision or reading disabilities as well as for seniors.  This could be the answer for students who need their textbooks on CD or scanned into a computer software program such as Kurtzweil so that they can access their textbooks.  We just ordered Kurtzweil and Dragon Naturally Speaking text to speech software for Andrew's laptop.  This software will allow us to scan textbooks and Andrew will be able to produce his own schoolwork without a scribe.  As he is heading into high school, this will do wonders for his independence next year.  The downside is that we (parents and school staff) will have to spend hours scanning textbooks and other texts with the Kurtzweil program.  It may well be worth the $350.00 investment to instead download textbooks and newspapers on the Kindle 2 within a minute.  It could be a dream come true and a freedom from some of the academic barriers that we have experienced because of Andrew's vision disability.  We will have to wait and see when the Kindle 2 becomes available if is in fact the answer that we have been looking for.

Every New Year brings loads of lists from entertainment shows, newspapers and magazines - best dressed, worst movies, best couples, best restaurants, and on it goes.    At lunch yesterday, Andrew talked about the lack of accessibility in the bathroom of the restaurant we were in and what a shame it was because the food is so darn good. He is an expert at bar placement and doorway widths.  The conversation turned into our family's best and worsts for accessibility and special needs for 2008. Here are just a few of our favorite and not so favorite websites, toys, restaurants and attractions for families of kids with special needs.  Our family will be taking notes throughout the year to add to the list.  What are your best and worsts for 2008?  Please share and I will add them to future posts on the subject.

Best Accessibility of Milwaukee Area Attractions/Restaurants/things of interest:

--Possibility Playground, Port Washington- The area's first accessible playground!  There is too much to say about this wonderful place - check out my story in the in the very informative January Metroparent special needs issue: Possibility Playground.

-Stonefire Pizza Company - Best accessible bathroom around with tons of room for wheelchairs, automatic sinks at varying heights, and perfectly placed grab bars, big automatic entrance, fun and good food too!  The building and gaming were designed by an architecture firm that specializes in universal design, to be accessible to all ages and abilities.

-Carrabbas Italian Grill, Brookfield, West Allis - "The best chicken fingers around", which are made on-site.  My son has recently also raved about the lasagna.  The bathrooms are accessible and the staff is friendly.  A nice family spot where I can get a decent glass of Chianti, to boot.

-Joey Buonas Pizza, Milwaukee - A ramp and an elevator lift help to get you to the dining area.  Good food and friendly staff, too!

-Red Arrow Ice Skating Rink - Open and accessible, wheelchairs allowed on ice and a bonus -Starbuck's! 

-Mitchell Park Domes - Great accessibility and the renovations/lights are fantastic!

-Discovery World - Wide open with exhibits at different levels for wheelchair users.

-Lakefront paved portion of the Oak Leaf Trail off of Veterans Park- The paved trail is about 3 1/2 mile round trip and a great way to get a decent wheelchair accessible hike.  You can't beat the view of Lake Michigan, the Milwaukee Art Museum and Discovery World. Plus, you can stop at Veteran's Park to fly a kite (the kite store is also wheelchair accessible).

-Milwaukee Public Market - Fun, yummy and interesting foods to excite and challenge your family's palate. Best fish tacos, new england clam chowder, falafel and I dare you to pass by the bakery and leave empty-handed!  The elevator takes you up to an eating and food demo area and the restrooms, which are large and accessible with automatic faucets.

-Milwaukee Streets and Curb Cut-outs in the spring, summer and fall - Walking/Wheeling around downtown Milwaukee in the spring, summer and fall with our family is a pleasure.  The cut-outs in the curbs and ramping allow people who use wheelchairs and canes to easily navigate the city.  Wonderful!

-Great Websites: Judy Winter's Winter Ramblings,  About.Com: Parenting Special Needs Children, and 5 Minutes for Special Needs

-Best New Toy: Sorry Sliders - Great fun for all ages and abilities.

-Other Resources:  Children's Hospital of Wisconsin Southeast Regional Center for Children with Special Healthcare Needs is staffed by parents of kids with special needs ready to answer any question you have, timely seminars are available and the library is also chock-full of books on special needs of all kinds. Katy's Kloset Equipment Lending Library - Donate or borrow gently used and spiffied-up wheelchairs, walkers, bath-rooming items, etc. 

 Some Accessibility 

-Ann's Italian Restaurant, Hales Corners - The entrance is highly accessible with a ramp and a pretty patio.  We love the food and the pizza and the service/management is really accommodating and friendly, but sadly, the bathroom is small and nearly impossible for a wheelchair to get in.  People who are slow walkers or who use canes should be okay, but please enlarge the bathroom so we don't have to use carry-out!

- Charcoal Grill (New Berlin, Greenfield Ave.): At this location, the wheelchair accessible bathroom stall  is too small to fit a wheelchair through the door and if a person gets into the stall, the bars are inconveniently placed.  This is too bad because we all agree that the food is good - especially the Harvest Salad or the Buffalo Chicken sandwich.

- Marcus Majestic and Ridge Theaters - Big enough bathrooms with automatic faucets, although borderline in the limited amount of wheelchair accessible seating.  People who use wheelchairs and have big families or more than just two friends need to sit apart from their loved ones. We could not necessarily go to the movies with even half of Andrew's wheelchair basketball teammates.

 Worst Accessibility of Milwaukee or Wisconsin Area Attractions/Restaurants/or other:

Milwaukee Streets and Curb Cut-Outs in the Winter: Our dinner at Joey Buonas last week almost didn't happen because we couldn't get up the curb through the snow and ice that had not been cleared away by the city.  Three helpful guys helped me lift the wheelchair up and over the snowy/icy barricaded curb and into the restaurant.  On our way out, the kind host of the restaurant helped us back over the mess so that we could get to our car.  The city really needs to work on this.

-Wilson's Ice Cream Parlor, Ephraim, Door County - Okay, I understand that this is an institution, however, there is no way into the front door (stairs going up to porch) and the only way in for a wheelchair is through the hot greasy kitchen  - not acceptable and kind of gross.  I spoke with the co-owner about this a few summers ago and mentioned that there was a perfect spot for a ramp on the side of the stairway.  Her answer was that Wilson's was a historical building and that a ramp would ruin the aesthetics. To add insult to injury there are no bars in the bathroom.  The owner shrugged when my then, 12 -year-old son brought this up to her. Okay then, we now go to Not Licked Yet Frozen Custard, Fish Creek, which is down the road. The aesthetics are great, with a pond and playground AND its accessible with a large bathroom.  Enough said.

Worst Movie: Tropic Thunder - for its incessant use of the "Re-tard" word.  I get and often enjoy "irreverent humor" and exaggeration.  This movie however, just made my husband and I uncomfortable. Intelligent adults probably could get the "irony" type of humor.  However, how many teens and others will use it as an excuse to use that archaic "R" word against people who have cognitive disabilities or who they mistake to have cognitive disabilities only because they look different?  Well, they saw it in a movie with Jack Black, Ben Stiller, Robert Downey Jr. and Tom Cruise, right?  Shame on you Disney/Dream Works Pictures.

Please share your best and worsts for 2008!

Andrew has always been very creative and that is how he defines himself.

Happy New Year!  Did you make any New Years Resolutions for 2008?  Did you reach your goals?  Oh, I  made my usual goal to eat healthier, to exercise and lose weight.  Some years it works and others... well, we will again attempt this lofty goal for '09.  One goal I was proud to accomplish however, was to keep my family first as much as possible.  Raising children is a full time job and for parents of kids with special needs it can be like having three or four jobs.  

The goal to keep family first in 2008 proved to be a challenge because my husband and I both started new businesses this year.  We work from home, which is a big help because we tag team parent in the morning and after school for rides to therapy and activities.  When Andrew goes to bed many times we will run off to our respective home offices to work while he is asleep.  So far it works.  Am I tired?  Yes!  Am I happy?  Yes.  It has been an interesting, productive and meaningful year.  I feel a bit like a juggler.  When I start to feel stressed - that is the cue to stop what I am doing and spend time with my son, because chances are that is what I am really stressed about.  He is also quite vocal about his need for me to be present for him and that is okay - at this very moment he has wheeled into my office to tell me that it is  five minutes to family game night and to please get off the computer.  Time to go play Sorry Sliders.  Have a great New Year with your families and if you have any tips on how to juggle work and parenthood - please send them  - I would very much appreciate it!  

Recently, I had the immense pleasure of having breakfast with one of my very favorite authors and special needs advocates, Judy Winter.  (see blog---) It was a thrill to meet the woman who confirmed and validatd everything I had thought about.....  It could absolutely be said that this woman is my idol. As readers of this blog know, Judy wrote the book I needed and wished for when Andrew was first diagnosed with CP at 6 mo. of age.

The timing could not have been better.  We just finished up Andrew's Neuro-Psych testing at Froedert with the wonderful, warm and sensitive, Dr. Newby.  Yeah, I highly recomend him.  Andrew's transition meeting for highschool is coming up in a few months and I am gearing up to be the best advocate for him that I know how.  Judy had some wonderful advice and words of wisdom for me.  She told me that this was a critical time in planning Andrew's future and that while helping to make a living for our family is of course important, it was imperitave that I focus on helping.... A. through this transition and get the plan into place properly.  Judy said that this was a critical time that will set the stage for adulthood.  We talked about all of my "balls in the air" and Judy really suggested balance in my life.  Balance?  She is right, I know.  So, once again I will make sure that I get my morning work out in and lunch with a friend once a week, and a date with the husband once a week as well.  We hear it all the time, don't we?  If we are not healthy and strong - physically and emotionally - if we do not take care of ourselves, we will not be able to take care of anyone else.  Period.  I  know this to be true from experience.  So, like Oprah, I am in search of the big B word - Balance.  The exercise and healthier eating gives me alot more energy than my previous carb - loaded (I love Potato chips too), sedentary lifestyle. Writing and running a business keeps me on my bum in front of this laptop for most of my days.  That is unless I am cooking with my new business.   To that end we also discussed the need for parents of kids with special needs to take care of themselves physically and emotionally.  Admittedly, I have not done a super good job of putting myself anywhere at the top of the list.  Like alot of parents, my tendency is to put my son, work, marriage and house way above myself.  Who has time to workout or walk or even eat healthy?  That has changed recently and I must admit - I do feel better focused.....

Like many parents, I have lots of balls in the air, but none is bigger or more important than the Andrew ball.  With a new business in addition to freelance writing -  type

So thank you Judy and Oprah, for putting things into perspective for me. 

Sam is an inspiration for Andrew and kids like him.

Grafton Family

Special Needs Site at ASK.com

"The greatest gift that a mother can give to her child is to have her face

light up whenever the child enters the room."   - Toni Morrison

No better gift, indeed.  I know first hand what it means to be that child who is loved unconditionally by her parents and I also know what it means to me as an adult.  It means that I have a strong sense of self and good self esteem. More importantly, it means that I have been given the gift of a box of tools for parenting, by the example of my parents.   These tools help me to be a good and loving parent.  Boy, have those tools come in handy!   While my parents did not raise a child with a disability - the same box of tools - filled with unconditional love, acceptance and the embracement of our child's unique set of talents, works in raising our son. 

With the obstacles that our children with special needs must overcome on a daily basis at school and at home, that unconditional love and understanding is vital for their self esteem and sense of self worth. The Toni Morrison quote at the top of this page is written on the dedication page of Rick Lavoie's book for parents of children with special needs titled, "It's So Much Work to Be Your Friend".  That book is a toolbox of its own- with great advice in helping your child achieve social success.

Rick is a renowned self esteem expert, special needs champion, speaker, educator and author.  Rick is also known for his videos about learning and children with disabilities called F.A.T. (frustration, anxiety and tension) City.  His website is chock-full of tips, articles, pod casts and stories for parents and educators about helping children with special needs succeed at school and at home.

On Wednesday night, November 5th, The Special Education Advisory Board of Elmbrook invites all interested parties to view Rick Lavoie's video and workshop "Beyond F.A.T. City".  This program will help parents and educators more fully understand the frustration and anxiety that children with learning disabilities face on a daily basis.  Rick's video is full of tools and tips to help your child learn the way they need to learn and at their own pace.  The presentation will be held from 7:00 - 9:00 at the Elmbrook District Office, 13780 Hope Street, in Brookfield.  For more information contact Sally at 414-704-8248 or email Sflasch@aol.com.

As parents of children with special needs, I believe we can never have enough tools to aid in our parenting, so I will be at the F.A.T. City workshop to learn as much as I can about helping my child learn without frustration and anxiety. 

My mother's face still lights up when I walk in, as did my father's before he passed away.  I have paid it forward and this is the gift that I give my child every time he wheels into the room.

Thanks to Jenny McCarthy and Oprah, there has been much media coverage on the link between diet and the symptoms of Autism.   Wisconsin mom, Margie Reichwald, has developed a cookbook for children who have Autism with recipes that are gluten, casein (dairy) and soy free and that have helped her son tremendously!  Here is a link to Margie's inspiring segment on the Morning Blend.  Margie says, "While my son is not cured of Autism, a cloud has lifted and he is on the path to recovery.  His journey with Autism is a lot less of a struggle since we removed the allergens from his diet."  I got a lump in my throat when Margie talked about the first time her son touched her cheek lovingly and said, "Mommy".  Anything with the potential to ease the struggles of a child with a disability is welcome in my book!  Thank you Margie!   Click HERE for information on Margie's cookbook, "Autism: A Path to Recovery - A tried and True Gluten/Casein/Soy Free Cookbook".

AND for even more info on the link between Autism and diet: 

This Wednesday on October 15th at 6:00, there will be a panel discussion on the Feingold Diet, as well as gluten, casein and soy free diets at the Parent's Place, 1570 E. Moreland Blvd., in Waukesha.  Meg McKenna, co-founder of Milwaukee Moms.com and fellow blogger, is leading the discussion.  Please call the Parent's Place to make a reservation: 262-549-5575.

Information is power and the more informed we are the better we can help our kids! 

In this crazy economic situation, I believe that we need to take time to slow down, ENJOY LIFE and not get stressed over things we can't control.  Breathe.  Judy Winter has started a Seven Days of Simple Pleasures series and has invited others to join her on this week of recording the simple pleasures in life. So, here I go and please share your simple pleasures as well!

Our family went to Veterans Park today.  The lakefront was spectacular and I was reminded of how much I really really love living here.  It was an absolutely gorgeous day in our city.  The sun was shining, the lake glistened and people were hiking, biking, roller blading and playing ball. 

We flew a kite and then walked about eight miles total on a part of the Oak Leaf Trail along the lakefront, past the wedding parties at the Milwaukee Art Museum, Discovery World, Summerfest grounds with a detour to the Milwaukee Public Market where we stopped for brownies, coffee and a Mexican Orange Soda for Andrew.  The miles upon miles of paved pathways allow wheelchair users to enjoy a good hike along with the numerous curb cut-a-ways that make navigating a wheelchair in this city a breeze.  Our simple pleasure for today was to simply enjoy our great city of Milwaukee.

Every Sunday night Andrew, my husband and I gather our supplies; a big bowl of popcorn, a box of tissues and pen and paper for accessibility design notes. All of this is in preparation for our favorite show, Extreme Home Makeover.  No other show has done more to shed a positive and productive light on so many different kinds of disabilities and medical conditions; ADHD, autism, cerebral palsy, blindness, cancer, muscular dystrophy, spina fida and the list goes on.   

We love this show and last night's episode did not disappoint us.  The Akers family, of Westchester, Ohio, have three children. A son, who has Chrohn's disease and two daughters with Spinal Muscular Atrophy, which can be very painful.  The two girls both use wheelchairs.  This family is a true inspiration in perseverance and fortitude.  In particular, 8 -year -old Brooke Akers, had this to say, "If you always look at the bright side, it can change your life."  Now, that is an attitude for all of us to emulate. 

In my last blog entry,  I told you about Judy Winter author, speaker, photographer and advocate for people with disabilities. She is also a BIG Extreme Home Makeover fan for much of the same reasons that I am.  Check out Judy's personal photographs on her Winter Ramblings blog from an EHM build near her home in Michigan this week.  She really picks up on the spirit and energy of the design team and everyone else involved in the build. 

And if you are still in need of an inspiring pick-me-up, check out what twelve-year-old John Thomas Robertson is doing for kids in need.  This cool kid, who is a train lover and believes that ALL people should be able to enjoy the historic trains in his hometown, wants to make the trains wheelchair accessible for his friends with disabilities. He will now get his chance with the help of Ty Pennington and the EHM crew.  Enjoy and get inspired!

When Andrew was diagnosed with cerebral palsy at 6 months of age, my range of emotions was vast.  Grief - for him and me and the loss of our hopes and dreams.  Anger - why us, why him?  Guilt - what could I have done differently?   There was also a very strong sense of determination on my part that regardless of what the doctors told me - I would give my baby the best and happiest childhood ever and help him reach his fullest potential above and beyond what the doctors told me. 

Out of sheer love for my child - I began an attack - there's no better word for it - on his diagnosis.  I did research and made milestone charts and graphs on what we needed to accomplish daily to help him reach those ever-looming milestones.  There was lots of stretching and reaching. Hadn't rolled over yet?  Out came that battery operated toy that bounced around to entice Andrew to roll.  Say new words? Out came the apple sauce on his outer lips to get him to move that tongue and of course there was me chattering incessantly and reading aloud to increase his auditory language skills.  He was a happy - giggly baby who didn't mind all of this work - it was a lot of hands on play and more attention and love than any baby could want or need.  We exposed Andrew to as much of the world around him as possible through language, travel, lots of playtime with cousins and friends and lots of one on one play with me. 

It has always been a reach for the stars - dream big type of mentality in our house and I only wish I had the book that I recently found to show me that my feelings were normal, to guide me and to confirm that I was doing the right thing.  "Breakthrough Parenting For Children With Special Needs - Raising The Bar of Expectations" by Judy Winter, 2006, is the book I needed when Andrew was diagnosed and I recomend it for all parents of children with special needs. Judy Winter covers it all; the diagnosis, education/IEPs, family, expectations and advocacy.  In particular, she encourages parents and educators to hold the bar high and to keep it there.  She has loads of tips and resources and ideas for parents.  

This is an empowering book that's relevant through all the ages of a child's life. Judy's blog is also one of my favorites - check it out.  Judy's message and positive and productive mind set about raising a child with a disability is one to learn from and to emulate. We all want the best for our kids and what better gift to give them then to help them reach for the stars? 

Tomorrow is the IEP. It can be overwhelming, daunting, emotionally exhausting, make you sick to your stomach AND you can turn it into a powerful tool to guide your child toward the future he deserves.  Oh dear, the weight of it all is almost too much to bear - maybe I'll go back to bed.  Nope, gotta deal with it. Thats alot of weight on our shoulders - yes, I am talking about your child'e IEP.

Ours is coming up and I have gone through my usual range of emotions (see first sentence).  Now, I have been at this IEP thing for oh, about eleven years and it is still a very intense thing for me.  Especially at re-eval time.  I have found a way however, to feel powerful and be the best advocate that I can be for my child.