Empowered Parent

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?