Roll With It

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!

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!  

"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? 

When Andrew was little, like all kids, he loved to go to the playground and swing on the swings, climb the monkey bars and build sandcastles. Even with his lack of mobility, he found a way to get around and I was always there to help him through, up, around and on the equipment.  As he got older however, the sand or gravel bottoms that are typical of playgrounds were not wheelchair friendly and as he grew it also became more and more difficult to help him to maneuver playground equipment.

Enter Possibility Playground.  Possibility Playground, located on Lake Michigan at Port Washing Bluff in Upper Lake, is designed for children with special needs as well as parents or grandparents who use wheelchairs and was developed by Sue Mayer, whose son Sam has Down's syndrome, with help from Mardy McGarry, Sam's special education teacher.  This project has been a year and a half in the making and construction is underway right now!  It is being built over the course of five days by community volunteers. They still need volunteers, drinks and various food donations at the site. 

It will be a sunny weekend and if you want to make a difference, give back, get some exercise or if your kids are like Andrew, who wants little kids in chairs to have the opportunity that he did not- head over to Possibility Playground.  Some facts about Possibility Playground:

-  The playground is the size of a football field with a playboard rubber surface and double wide ramping to make it wheelchair accessible.

-  Specific therapeutic aspects of the playground will help children work on coordination, core muscle strength and walking as well as numerous slides, tunnels, high and low monkey bars and rings will keep kids busy for hours.

- A centrally located pirate ship, rock wall and lighthouse will add to the experience.

On Saturday, we will join in and lend a hand to help build this wonderful playground for all- hope to see you there!

Are you overdue for a mammogram?  Make that appointment and do not delay.  A good friend of mine and fellow "book clubber" was diagnosed with *** cancer several weeks ago.  She detected the lump herself and says that "she just knew". She has no family history and she is under 50.   This Friday she will have a masectomy.   

Gail has a strong spirit and a great "get- it- done and bear- it" attitude. She is the trooper who rallies when she has a head cold or the flu whereas I am apt to head right to bed with my Nyquil and a good magazine at the first sniffle.  She has lots of support from family and friends and many of us are already preparing meals for her recovery.  I am putting together a home package; soft fuzzy slippers, the first season of Mad Men dvds, peppermint green tea and lots of good books.

If you are a woman or a man who loves a woman-  check out her new blog to follow along on her journey and make that mammogram appointment now!   

While I am at it - don't forget the Susan G. Komen Race for the Cure. Our book club will all be there to support our friend in her journey.  Hope to see you all there!  

One of the things that I am always on the lookout for are role models for my son - people who have gone after their hopes and dreams regardless of their disability.  Our kids need inspiration and to know that others before them have succeeded with their disability.

Well, here is something for the girls.  Logan Magazine- a monthly periodical for girl's with disabilities who have the same interests many young girls have - stories about other girls like them, fashion and all things trendy.  My favorite part is the Tools for Living section that has the best eye lash curlers, nail polish, staplers and more for people with fine motor impairments.    It is written and edited by a young woman who survived a brain injury at 16 -years -old.  Here is the link to Logan Magazine:  http://www.loganmagazine.com/tools.html

Now, when I find one for the boys - I will let you know!

The divorce rate for parents of children with disabilities is 79%.  Whew.  That's quite a statistic.  I can see how it happens.  Marriage can be hard enough with so many things to agree on or not; money, household duties and child-rearing.  Then, there is the added responsibility of having a child with special needs.  We all know what those extra stressors are; worry over our children's health, education, future and more money worries because the financial strain on households with children with disabilities can be significantly higher than the average household. 

Lots of bad news right?  Not necessarily - there are things we can do to protect our marriages and our families.  We owe it to ourselves and our kids to fight for our marriage and fight hard.  I took a quick very informal survey and asked a few of my friends who have kids with disabilities what they do to fight for their marriage and keep it strong.  Here are some of their answers along with mine.

1.  Put your marriage first.  Oh, I know its difficult - especially with a child with special needs, but for the family to succeed in the long run - it is important to make time as a couple - not just as parents. Make and keep a weekly date night.  Come heck or high water do not give up that date night.  Remember what brought you and your spouse together in the first place and try really hard not to talk about your child's diagnosis - do something fun.  Go to a wine tasting or Jazz in the Park or try that new place on Capitol in Brookfield - Agave Southwestern Grill - they have a great outdoor patio that is festive and a fun place to hang out with your spouse.  Do anything that you love to do and do it together.   United Cerebral Palsy has a respite program that we found helpful when Andrew was younger.  Here is the link:  http://www.ucpsew.org/newRespite.html

2. Do nice things for eachother - like you used to when you were dating or first married.  A friend of mine will take her husband's car to the car wash and put his favorite gum on the dashboard.  Another friend's husband will draw a bath, light the candles and then leave her alone so she can enjoy much needed quiet time.  Last week, my husband offerred to watch my girlfriend's boys, because her husband was out of town so that we could go out on a girl's night.  It is the little things that you show each other how much you care that will add strength to your marriage.

3. Touch each other.  Life is full of details to be taken care of -mail, laundry, dinner, shopping and phone calls.  If you don't take the time to stop and touch each other, it may seem like you are not much more than cubicle mates.  Touch, in any form, is a great way to remind yourself that this relationship is intimate.

4. Communicate and laugh together. Share the good and the bad - it will help to lighten your load. A friend of mine and her husband share funny stories from their day as often as possible and with three kids, she says that there is plenty of humorous material to go around! 

5. Respect the fact that your spouse may be at different levels of accepting your child's disability and accept those differences.

6. Don't forget to take "me" time!  Another friend says that she needs that time to re-energize and get a fresh perspective on life.  Personally, I feel like a better spouse and parent after a girl's night out or better yet, a girl's weekend away!

7. Find a good counselor, if need be.  Cars need tune-ups right?  Think of it as maintenance for your marriage.  Ask friends or your doctor for a referral.  Good marriage counselors will give you and your spouse the tools you need to deal to comminciate and lighten the stress on your marriage.

What other things can we do to keep our marriages on track?  What do you do to keep your marriage strong?

My son made me dinner tonight and I am grinning from ear to ear.  Andrew likes to create his own recipes, but it is usually me who assembles and cooks them.  Tonight however, he wanted to do the creating and the cooking and after a very busy day - this was a gift.  It wasn't fancy, but it was good and super simple.  Sometimes, those are the best kind!  Here's a tip: keep diced vegetables in the fridge for small kids so they can be more independent when cooking.  This is an easy recipe that may be just the thing to get young kids interested in cooking and who knows?  With a little encouragement your kids may soon make dinner for you!   Here it is:

Little Mexican Pizzas For Mom

- 2 English Muffins, Split

- 1 cup Spaghetti Sauce mixed 1/4 cup cream

- 1 cup diced yellow and orange peppers (mixed)

- 1 small can of diced green chiles, drained

- 4 slices Monterrey Jack Cheese

- 1/2 cup Kraft Grated Parmesan Cheese

Split the English Muffins and place on a cookie sheet.  Spread the creamy spaghetti sauce evenly on all four halves of the english muffins.  Mix drained green chiles with diced peppers. Top each muffin with diced peppers, monterrey jack and parmesan cheeses.  Place under broiler until cheese is hot and bubbly - about 3-4 minutes.  Note: Help little ones remove pizzas from oven. Serve with sliced watermelon.  Enjoy!

I wrote a story last year for the Journal Sentinel about what parents of kids with disabilities do to stay physically strong and I interviewed several parents about their workout habits.  These parents biked, lifted weights, did yoga and pilates all in an effort to get and stay strong so that they would be ready to care for their children with disabilities both physically and mentally.  This summer I hit a physical wall and the time has come for me to take their advice.   

One of the realities of raising a child with a physical disability is that at some point that child will grow big enough that he will be difficult to move, if at all.  At almost 14 years old, Andrew has indeed grown quite tall and when he is standing comes up to the bridge of my nose.  I have always been strong enough to move him if necessary and have never really needed or wanted help. Andrew is more than fairly independent and can mostly transfer himself, unless he has the flu or like this weekend when we were literally stuck in the pool.  Andrew was too cold, wet and tired from swimming to stand or walk up the steps and I was having a difficult time moving his frame up and out of the pool.  The world is full of helpful people however, and as much as I didn't want help, I needed it and reluctantly accepted it from a man who was at the pool with his granddaughters. As Andrew said, "A grandpa to the rescue!"   He grabbed one arm and I grabbed the other and with Andrew's help, we slowly got out of the pool and into his wheelchair.  After thanking him profusely, he told me that he helps his son, who is a priest, at several camps for kids with disabilities and that it is okay to ask for help.  In raising Andrew, I have always known this day would come - when I would not be able to move him on my own.  What I didn't bargain for, was how it would make me feel - and I really hate to say this - sort of helpless.  So I will take the advice of those strong parents that I interviewed and hit the gym along with Andrew, so that both of us will be strong enough to physically and emotionally to move through life.  Oh, and ask for help when we need it.    How do you transfer your children?  What do you do to get and stay strong?

My son wants to be a pilot and a policeman and a video game designer when he grows up.  I am sure that next week he will want to be something else entirely.  The thing is that when he tells me that he wants to be a pilot or a policeman, part of me wants him to be realistic.  At school, they are steering the kids to start thinking about realistic career choices.  How is he going to quickly chase those bad guys when he will have to take the time to get his wheelchair in and out of that squad car?    Believe me, transferring a wheelchair in and out of a car is not a speedy process because at the moment I am the one hauling his wheelchair in and out of our station wagon and I am sure that I will not be there to help him when he is hunting down those criminals.

Thankfully, the mom part of me wins and I bite my tongue and I do not tell him to be realistic because I will not squelch his hopes and dreams for the future. I am the one who is constantly telling him that there are no barriers, for Pete's sake. At thirteen, he should still be able to dream big.  Heck, we should all dream big - no matter our age. How do I know that there won't be some new technologically advanced squad car for police with disabilities or that he won't invent it?    I am glad that I have not given in to realism because on todays front page of the Waukesha section of the Journal Sentinel is a story about adaptive airplanes for pilots who use wheelchairs. http://www.jsonline.com/story/index.aspx?id=776929 

Tomorrow at breakfast, I will show Andrew the story and then I will tell him again that there are no barriers - only hopes and big dreams of whatever you want to be when you grow up.

One of the more important goals that I have as a parent, is to teach my child to not let his disability be a barrier to his hopes and dreams for for the present or his future.  Whether it be making new friends, joining school clubs or playing a sport that he wants to play, I want my son to know that he can do the things he wants to do in life.  Already, he has a "can-do" spirit about him and I feel that a part of this is because of the various sports and recreational opportunities he has tried over the years; Topps Soccer, tennis, basketball, softball, hockey and martial arts.  We are fortunate that in Southeastern Wisconsin there are many opportunities for competitive and recreational sports.  Last Monday, I brought Jim Zomcheck, coordinator of Blaze Sports Milwaukee, on the Morning Blend with me.  Blaze Sports has a wide variety of competitive sport and recreational opportunities for kids with all kinds of disabilities and this summer there is a different sport to try almost every night of the week.  Tennis, softball, hockey, basketball and golf are all much better alternatives than tv, video and computer games.  The more we get our kids out there experiencing life - the more likely they are to explore new opportunities as adults. Here is the link: 

http://www.themorningblend.com/NewsArticle/tabid/1474/xmid/23761/Default.aspx

I like exposure for people with disabilities. A lot.  The more exposure people with disabilities get in the media and from celebrities - the more acceptance society will have for people who are different.  We need as much exposure as we can get because frankly, I still cannot believe that as my son and I walk/wheel alongside each other at the mall - we catch the inevitable stares of some people passing by.  Now, sometimes I like to think that it is because my child is so darn good looking.  The reality of the situation however, is that people cannot help themselves - a kid in a wheelchair is still different.

A few months ago, some writer friends and I saw Barbara Walters, who was in town touting her new memoir, Audition (Knopf, May 2008, $29.95) and love her or not, she is very successful.  Interestingly, she credits her success to growing up with a sister with developmental delays. Her sister did not have friends or go to college or get married.  Barbara says that if her sister had been raised today rather than in the forties, she may have been able to have those experiences.  Though things are not ideal in 2008, children with all different kinds of disabilities have access to a good education, social opportunities, college and marriage, if they so choose.

Barbara's experiences with her sister may have happened a long time ago and some of the things that they called people with developmental disabilities have thankfully changed, but she provides good insight into her feelings and experiences as the sibling of a child with special needs and according to Barbara, this is what drove her success.   

Thank goodness times are changing for the better.  There are still improvements to be made however, and we need to continue to pursue equality in education, accessibility, housing and jobs.

Thank you, Barbara for the exposure - we will take it!

How many times have we, as parent's of kids with special needs waited endlessly for insurance to approve a new wheelchair or walker?  Or, how many pieces of outgrown walkers, bath chairs or wheelchairs are gathering dust in your basement or garage?  Well, here is an organization that every family of children with special needs or elderly parents should know about - Katy's Kloset in Pewaukee.  Katy's Kloset, which is a part of Team Up With Families,  is an equipment lending library where you can drop off your kid's or parents old or outgrown medical equipment.  The staff at Katy's Kloset will then spruce it up and lend it out to familys' who need it free of charge.    Here is a link to a segment about Katy's Kloset that recently appeared on Lifetime TV.

http://teamupwithfamilies.org/

Do you believe that we meet the people we need to meet when we need them?  I do and yesterday was a perfect expample of this. 

Every year during the first week in July, our family heads to Door County with various cousins, uncles, aunts and grandparents for a family reunion. It is always a wonderful week of lake fun, game nights, fireworks, hiking/biking in Peninsula State Park and family bonding.  For my son, Andrew, it is always a joyous and wonderful relief to be surrounded by people who understand his disability and love him unconditionally. Every year there is one thing he looks forward to - the go-karts and he always rides with his dad or one of his older cousins in the double carts.

For a child with limited mobility, there is something about the speed and wind blowing on your face and through your hair that is freeing and exhilerating.  Because of tightness in his legs due to cerebral palsy, Andrew would have a difficult time controlling the gas and brake pedals.   Every year since he has been about 8 years old, Andrew has begged for a chance to drive a cart on his own and every year the answer has been no - you are not ready sweetie.  

This year, the go-kart track in Sister Bay was unusually empty and the only patrons were our family.  This was the perfect time to test Andrew's drving capabilities. All of Andrew's cousins were driving on the track to cheer him on.  My husband, Jan and I drove right behind him like two proud and very nervous mother hens.  With an ear to ear smile as wide as that track, Andrew took the turns beautifully and manuevered the course like a pro - until it came time to stop - his legs were so tight from all of the excitement that the only way for him to stop was to slow down and bump/crash into the cars in front of him.  There is no way that he would be able to drive the go-karts with a crowd or possibly at all if he could not easily control the brakes - this would be a danger to himself and others.

Andrew was fairly devastated by the revelation that he wasn't quite ready to go-cart safely - it represented the stark reality to him that he really could not do what everyone else can do - it was tough to watch him go through this because he is alot like me in that we kind of see things through rose colored glasses and mostly think positively.  I have always impressed upon him a "can-do" spirit and taught him that we can make adaptations so that he can do the things he wants to do in life. That night Andrew ranted and raved at the world and at his wheelchair and at his disability.  I hugged him tight and allowed him to grieve and also agreed that this was tough. We finished up like we always do - counting our blessings and talking about all of the things that he can do.  His cousins and aunts then basically descended on him to cheer him up and support him with all of the love that they could.  That was how we ended our vacation on Friday night and I thought that was the end of that.

Still recovering from our vacation, my husband, Andrew and I decided to go hiking yesterday on a wheelchair accessible trail called Paradise Landing in the Kettle Moraine Forest.  It took some back-tracking and getting slightly lost to find the trail, but we did and it even though the paved trail is only 1/2 mile long, we were rewarded with a natural spring to explore and an old spring house built by the Petitt in the 1930's.  As we headed back to the car, we saw a man in a wheelchair sitting on the fishing deck talking with a friend.  We didn't want to disturb him, but he called us over for introductions.  His name is Gary.

Gary talked about living with his disability and how we as parents can help Andrew be ultimately independent. He also talked to Andrew about possibilities and how he pursues his many interests.  He talked about adapting to what life hands you and he also talked about the importance of weight lifting and not depending on others - all great stuff coming from someone who knows.

Andrew then told Gary about the go-kart experience and his disapointment in the final outcome and Gary says, "Haven't you ever been to the track in Dousman?  They have go-karts with hand controls for the gas and brake pedals!"  Excuse me?  Hand controls? Seriously, I wanted to cry.   Andrew let out a joyous whoop and you can imagine just how excited he was.  My husband and I could not believe the timing of this meeting.  Unbelievable.  In the next few weeks, we will take Andrew to Dousman so that he can go go-karting in carts made just for him. I will let you know how it goes.

Who would think that on the day we needed it most that we would meet the person that we really needed to meet on a little trail in the middle of the Kettle Moraine Forest?  If we had not gotten lost - we would have missed him.  The point is that we didn't miss him and we were meant to meet Gary.

What are your stories?  In dealing with your kid's disabilities - who has popped into your lives in just the right place and just the right time?