Finding A Balance

In my last post I briefly touched on the fact that I sometimes become tired, sore, disorganized when managing my job as an OT in the school settings along with managing other adult tasks.  The question has begun to rise for me....how am I going to approach this?  Like everyone else I want to be able to participate in everything that life has to offer including having a career, maintaining a household, traveling, hobbies and relationships.  When do I say "No, I can't do all of this?"  Saying "No." to what our society has to offer really isn't in my nature.  Then I began to realize that saying "No." to what we all "should" be doing isn't in the nature of the majority of most Americans.

As I was gathering some of these thoughts and ideas about how I am going to get the most out of my mid adult life I came up with a few more questions or realizations.  How do other people with physical disabilities manage these challenges?  They certainly don't have a team of therapists and coordinators running around making sure they follow their plan.  Then I remembered that important word inclusion and how important it is with the students we work with at school.  Many adults with physical disabilities have something that is acquired based on their lifestyle and trying to come up with cool tricks to keep up with doing what they "should" be doing.  Becoming disabled at some point throughout our adult life is something that we're all going to face at some point even if it's from an acute injury.  So I began to realize that discussing stress reduction, organization and a healthy life style is something that every adult needs to be apart of.  Also because of the place I am at in my life I have learned true happiness and success is about having a good balance in all aspects of life.

One day I came across this article and felt it was perfect for what I had begun brainstorming:
http://www.huffingtonpost.com/scott-dannemiller/busy-is-a-sickness_b_6761264.html

Baggage. We All Have It.

 I realize that everyone is different and has their own personal struggles.  At some point in everyone's life they are going to have a physical aliment  that requires attention and a certain amount of rehabilitation.  This is how I view my cerebral palsy.  Some physical challenges that are kind of a pain to tend to and take care of.  I am very self reliant, independent (physically and emotionally) and I don't really consider myself disabled or challenged by the obstacles of what life has to offer.  If there is something I physically can't do, I ask for help, even though sometimes that is hard to do.  There isn't anything standing in my way from a full complete life.

 I realize looking at the bigger picture I am a minority.  Not everyone has a life-long physical disability.  People still view me differently than the average person because my speech is different and I walk differently.  I am amazed at how I tend to react to people who make my differences a big deal.  I think these people are a little weird and I become a bit more standoffish to them than other people who don't make my differences an issue.  Even when people want to put me on a pedestal for the person who they think I am, I get a little weirded out.  I am no different than a person who is overweight and has lost a lot of weight, or people of a different skin color/ethnic group  or people who have struggled with a mental illness and had to overcome extra barriers to succeed and  become a respectable member of society.  I don't want to make a big deal about my physical diagnosis because frankly I have better things to think about and worry about. 

However, no matter how much I like to ignore the fact that I am disabled, it's still there and will always be there.  It's there for me like an annoying ex husband you share custody kids with or college debt.  It always has to be considered in certain decisions I make and that's okay.  I'm more prone to becoming tired and pretty sore throughout my body.  I use almost double the energy a woman my age does to complete tasks.  Sometimes I wonder if I actually feel 38 or 43 years old instead of my actual age.  It takes me longer to walk to my car, get dressed or to eat.  Again, I am not complaining.  But lately it has been a reality check of what my actual expectations are for myself are and what my actual lifestyle will look like for myself over the next several years.  I remember my mom keeping tabs on this for me as a child.  When I first hit adulthood at 18 I realized full time college, a part time job and time for socializing until 2am on the weekends wasn't for me.  I feel like I am going to have it all, but just not all at once, my body just won't allow for it. 

I feel like my cerebral palsy is a pesky, annoying mishap that just happen to me.  To put it bluntly, it's my baggage.  I would not be the person I am without it.  It has made me more mature, more humble and a more empathetic person.  I wouldn't trade it for some other pesky, annoying life challenge.  I feel like I have the personality and attitude to handle it or conquer it with grace.    

My Greatest Battle of All - a 17 year old's perspective

I have this thing that is never going to give me a challenge the rest of my life.  It is called mild cerebral palsy.  When I was a little girl I used to think, "Well when I get older it will get better."  It is almost like I thought it was going to go away.  Just recently I have realized that it is never going to leave.  I can pretend that I don't have it, I can even ignore it.  But it's always going to be there and everyday there is going to be a situation that reminds me of this special challenge I have to face.  This is not really a bad thing.  I think my disability has made me a better person mentally and emotionally but I just get frustrated when there is a reminder of what makes me different than everyone else.

I would just love to get in the mind of someone while I am first meeting them for the first time.  Actually I would like to know what people think of me as they are gradually getting to know me better.  I'm sure their first impression is usually "I wonder if she is slow?" or "I wonder what she can and can't do?" or "Why is she talking funny?"  Then as people get to know the real me the wonder how and why I can lead the life of a normal person.  So many times I have been complimented on the work I do and the way I keep up with everyone else.  When people say things like this the first thing I say is "Oh Thanks, I try."  Then for a little while I feel proud of myself.  After thinking about it more I wonder what the hell that person expects me to do, just sit there and watch other people live their lives?  As a young person I have decided that I am too strong to let that happen.  The truth is I want more from myself than just winning the battle with my CP.  I want to get good grades, be a good employee and have lots of people like me for who I am.

To answer some of these questions, I am not slow except when it comes to Physics and I talk funny because my muscles are weaker than yours in certain areas of my body.  This means that my muscles have to work extra hard to keep up with my daily routine.  It mainly affects my right side and the muscles in my mouth.  I call my right hand "the dead hand" because whenever I try and make it work the muscles tighten up and make things difficult.  I limp because my entire right leg twists in.  When I take my shoes off you can notice that my right shoe is mainly worn on the right because it has adjusted to my foot twisting in,  Recently I have been having problems using these muscles too much.  It's like my body is telling me that it's over worked but mentally I don't want to stop so my body will have to get used to it.

At school most of the time I feel like a normal person.  Everyone knows my personality and they are able to treat me as an individual.  The scary thing is that next year I will be starting this whole new life with new people that have to get to know me all over again.  Right now this is happening at work.  My fellow employees are not mean to me but they treat me differently than they treat each other,  They all make jokes together and carry on conversations.  Then there is Kim, who they have to watch out for to make sure she doesn't trip or drop the trash bag.  It is just so hard for me to allow people to get to know the real me.  This is probably because I have to trust them before I can let them do this.  This is because I never know when someone is being nice to me to be sarcastic, because they feel they have to, or because they really want to be my friend.  I have learned how to read people throughout the years and I am able to notice the really special people who are just able to forget about my CP.  My friends are able to forget about my CP.  The best thing they do is make me over achieve.  Every time they complain about getting bad grades it always makes me want to do better.  The worst thing about them forgetting about my disability that pisses me off is there is usually no comment,  Then I feel bad because I feel like I am complaining.  But then I realize that there is no comment because they don't know what to say.  What I'm feeling at that time is something that they will never understand.

I think that my cerebral palsy will have an impact on the choices I make for the rest of my life, the career I choose, who I have relationships with, and how I raise my children.  While writing this essay I have learned that my greatest weakness is my greatest advantage of all.  I will never change who I am for anyone.

Why It Is Important to Create an Alternative Career

For a long time I have been thinking "I have more to offer the OT world and tiny corner of the world around me."  I just don't know what it is I have to offer.  I haven't come across a true passion that motivates me in a long time.  The way I see it, this is what a career should be.  Don't get me wrong, I love my students and the people I work with.  I still wake up satisfied with the idea of going to work and seeing these kids that I care for and the coworkers who I have developed relationships with.  Sometimes I feel like I am even making a difference, which is great!

 However, I do experience the feeling that I am stuck in a rut, that I am expensing my energy in areas that are not useful.  As a person with a physical disability, there is no energy to expense and no time to waste.  Carrying extra bags or spending extra time on paper work cannot be a part of the mix.  Discussing my expertise and knowledge as an OT in meetings and to parents and other professionals is only about 25% of my job, another 25% of my job is being with kids, 20% is used traveling and unloading/loading, setting up materials, organizing papers and trying to figure out procedures that change bimonthly; 20% is necessary paperwork that needs to be done for students to succeed and our public schools to be reimbursed.  And yes, I will admit the other 10% is used socializing and being incredibly flexible for building schedules and procedures that occur within the special education system.  If you can manage this type of multitasking, organizing and the level of people skills it takes to be a part of several different special education teams, this is a good job for you.  I will admit, I am decent at my job.  Many nights I come home exhausted and wanting something more.  I currently do not have a career.  I am smart and knowledgeable and I used to love Occupational Therapy as a profession.  For a long time I kept thinking there is room for growth within the bureaucracy of special education.  If I just try harder, I'll be more organized and there will be more time when I am less exhausted for professional growth.  If I try any harder with what I already know, I will collapse.  Then, briefly I have thought about what it would be like to switch jobs to a different bureaucracy.  A bureaucracy where there are no 3 year olds smiling at me (or hiding or running).  A bureaucracy where there are no summers or 2 weeks off at Christmas break.  A bureaucracy where billing is more challenging than it is in a school setting.  And I think, OT's mainly work in bureaucracy's when they need their bills paid. 

I am young, healthy and still motivated enough to keep on learning.  I have 2 degrees that are going to give me the skills I need to research and plan ahead with what I need to do to be a successful individual with a disability in the work force.  I think step one for me is devising a plan where I always work smarter, not harder.  Organization 101 will also be the key.  

Everything is Full Circle

Everything is Full Circle

I truly believe that everything happens in full circle most of the time.  People who influence you when you are young, eventually pop back up in your life.  For most of us we think of situations like this happening in our personal lives.  You always hear of people falling in love with a great friend from their childhood or running into old friends at reunions.  The 6 degrees of separation from Kevin Bacon truly does exist (even though I haven't figured out how I am connected to Kevin).  It seems that Facebook and other forms of social media and technology has magnified this.

When I look at my journey, honestly the oddest realizations of this concept has occurred in my professional life and because of that I feel blessed.  For me, it seems to personalize my career and make sense of why I work so hard every day.  I think the fancy new millennium term for this is networking however, I'd like to think there's more to it than that!

When I was young I had the same OT for 8 years.  Most people who know me have an understanding that Linda became a great friend to my family along with a few other educators from my elementary school days.  We mainly kept in touch with her through lunches and dinners at the Olive Garden.  We've attempted other restaurants but Olive Garden is our favorite (okay, maybe it's my favorite)!  When I started middle school my family had moved to Holt and my therapeutic relationship with Linda ended.  She received one call from Holt Jr. High when I was in 8th grade so she could give her opinion about my assistive technology needs.  At age 15 my mom and I were discussing my future and my career options/goals.  My mom had mentioned Occupational Therapy and from that point on I was determined to become a great school based therapist.  At age 17 I contacted Linda to mentor and shadow her within the school setting for a School To Work class my senior year of high school.  One week while shadowing Linda there was a Baker College student shadowing her at the same time.  Out of context, I barely recognized Bonnie a lady I once knew.  Between the ages of 6-9 years I was in therapeutic riding and 4-H for showing horses.  Bonnie was my instructor and 4-H leader.  Together, Linda, Bonnie and myself brainstormed and realized that the Baker College Occupational Therapy Program would be a great program for me to pursue my career goals.  I worked hard and stuck to that plan. 

In 2001 I went to visit Baker College and the OT program.  Like Linda and Bonnie had informed me it was a small program which allowed the instructors to be more personable.  While going through the program I remember each instructor taking the time to get to know me and my strengths and weaknesses personally and professionally.  Because of these interactions I feel I made it through a very tough clinical program.  A year and a half ago I started feeling like I have much more to offer with the education I've earned and the career I've started.  I received an email from the Dean of the OT program at Baker asking if I wanted to teach a course for the program.  Thoughts crossed my mind: "I can teach future professionals.  It's one area of OT that wouldn't be hindered by my physical limitations. "  So, I emailed back and basically applied.  Ever since then each quarter I was receiving a call from Baker to teach a course.  I took the opportunity when I had the summer off from my school position.  So 10 years after I graduated from the Occupational Therapy Program I went back to teach at the college level.  Something I never imagined in my wildest dreams.

When I drove up to the really tiny commuter school in Flint it was twice the size it used to be.  A lot had changed in 10 years.  But on my commutes there twice a week I remembered the same thoughts and feelings and fears I had on my drives there 10-13 years ago.  Once in awhile one of my favorite songs from that era came on the radio while I was driving and the hallways of Baker still smelled the same.  All I could think was how bizarre it was to basically go back in time.  I also realized how much I had changed since I was a student there.  One of the coolest things for me was talking with former instructors from the program and their reactions to how much I had changed professionally.  It gave me a chance to self examine and realize that professionally I am on a positive track.

So the day I accepted the summer job I texted Linda and told her we needed to celebrate and I explained why.  She said yes, we do!!  In June we met at Olive Garden and she made sure my lunch with the tiramisu was on her.  She explained to the waitress "our story."  A student she worked with 30 years ago was now about to start teaching at a college.  And that my friends, felt really good!        

I Am Working Where I'm Supposed To Be!

                A couple of weeks ago I had two very strong reminders that I am working exactly where I am supposed to be.  I received very good feedback from my supervisor.  I was appreciative of this and after this conversation occurred  I reflected back to all the difficult times and doubts I had regarding whether or not I would become a good OT working in the schools.  These memories ranged from my obvious physical challenges, bad grades in college, being sent home on medical leave by human resources until my health condition improved when I worked at the Mt. Pleasant Center and other misunderstandings with co-workers and supervisors regarding my cerebral palsy.  I will always be disabled regardless of how well I modify my environment or make accommodations for myself or ignore it.  Rather than my cerebral palsy being an actual disability I view it as this pesky, annoying imperfection that will always being around to make other people uncomfortable and at times my interactions with these people a challenge.  I am no different than any other person in a minority group and how I choose to handle that is up to me.  I have major self esteem issues, I have been told I couldn't make it or succeed, and I have been unable to ignore the fact that I will be discriminated against, always.  For a person in my situation I don't have the option of being naive or not learning the laws that protect me in the workplace environment.  It was just very nice to know I was valued by administration where I work.  This compliment and conversation was enough to make my day a good one.  What I didn't know, my day was about to get even better.

                I work mainly with pre-school to second graders.  Almost daily or at least 2-3 times a week I get asked "What is wrong with you? Why are you walking and/or talking that way?  I will be honest since it's daily, sometimes I give a short response, rarely I ignore the question and just keep walking.  When I do this usually the halls are crowed with lots of little people, snow pants, boots, coats and I am on a mission and preoccupied.  Please remember, I am not walking around thinking about my CP.  Many, many adults probably think that I am.  How many adults wander around thinking about their annoying, pesky, imperfections when they are at work?  So, when the students confront me about this so many times I am caught off guard.  I do try and give an explanation that is age appropriate and also appropriate for the time and place.  Most of the time I answer, "I was born this way and my muscles work slower in my mouth and legs but that's okay because we're all different, right?"  I usually get a nod and a smile. 

                On this particular day I was walking with one of my students I see for therapy and the halls were practically empty.  A girl walks up beside us and asked what was wrong with me.  I could tell instantly she was being sincere and curious.  So, I gave her my explanation.  She responded by saying, "Well, that's okay because you are really beautiful."  Well, my heart just lit up with joy and I had to think quickly with how to respond to that.  So, I told her thank you and that was very kind of her.  She said "Thanks, I like being kind to people."  Man, I love working with little ones!  This little girl made all the medicaid billing and paper work worth it for the next several weeks.  I wouldn't request a different job or placement for anything.     

Letter to Legislators

THE END OF PUBLIC SCHOOLS?

 

To Whom It May Concern:

I am writing this letter on behalf of the millions of minority children who have a right to a free and public education in the state of Michigan.  My passion is to educate and provide children with disabilities with the ability to self-advocate and become productive members of society.  I believe that all children are the future of our country and global society.  Even though I work specifically with children who receive special education services I am well aware that all minorities are at risk with allowing schools to open that are only for profit.  This includes children with different socioeconomic status and different cultural or ethnic backgrounds, as well as children with various types of disabilities. 

The basis of our country was to provide a free and appropriate education for all children.  Minority groups and politicians have fought for decades to make public education an equal opportunity for all children.  Some of the laws that were passed include the Rehabilitation Act of 1973, Education for All Handicapped Children (1975), the American’s with Disabilities Act of 1990 and Individual with Disabilities Education Act Amendments of 1997.  It is also important to remember the hard work and dedication that existed to desegregate females and African Americans in the public educational system.  

Several years of hard work in support of equality is about to become unraveled if this new legislation is passed.  I do believe this will inflame our current problems as a country.  I believe welfare and unemployment will rise.  I believe the middle class will be distinguished and the amount of individuals in the upper class will not increase.

My personal story is a reason why public education should not be tampered with or diminished.  At the age of 2 years old I was diagnosed with mild cerebral palsy.  I was immediately seen by several school based therapists in the home and at daycare until I entered a pre-primary preschool for otherwise health impaired children. 

I entered into these programs and received these services at a very unique time in the history of special education. I began my education when the Rehabilitation Act of 1973 was a decade old.  It had been around long enough for educators to become acclimated to the laws and changes that were required in the world of education, yet it was also new enough to realize that mainstreaming children with special needs with other students was a great idea.  I was able to attend an elementary school where a center-based program was still set in place with a wide variety of therapists and resources in the Lansing School District.  It was in this elementary school where general and special education providers encouraged my determination, motivation and ability to learn.  In fifth grade my dream was to be a babysitter or day care provider and the educators in my life told me I would surpass and go above and beyond that goal.  These public educators remained in my life as mentors and major advocates for the remainder of my education and career.

I moved to another local school district where I was fully mainstreamed.  I was on a teacher consultant’s caseload and received speech therapy twice a month.  In sixth through eighth grade the teacher consultant was not located in my buildings.  It was up to me and my parents to work with general education teachers to explain the accommodations I needed.  I was able to communicate well and succeeded on the B honor roll.  By tenth grade I was in all college prep courses and without having a laptop with me at all times for school work, I would have failed.  My motor speed was too slow to take notes and complete tests.  It was my teacher consultant in high school who went above and beyond her role to get me a school laptop on a full time basis. I was one of the first students at the time who took a laptop to and from school each day.  My teacher consultant also had me enter a school to work program where I learned about resume writing, interview skills and job shadowing.   My tenth grade geometry teacher stayed after school on his time to tutor me and a French teacher who had never had a special education student attended her first Individualized Educational Plan meeting on my behalf.  My parents and I both began to realize that my success was based on the effort and dedication by both general and special education teachers.  All of them were public employees and because of all of them I knew I wanted my future career to be based on educating children with special needs.  My dream was to give back what I had been offered. 

In high school I fell in love with Occupational Therapy as a profession.  I loved the holistic approach and that the foundation of the occupation was independence in all areas of life.  I was never a great test taker in high school and it would have been difficult to enter a 4 year college or university.  I began my higher education at Lansing Community College.  It was a great stepping stone for someone in my situation.  It provided me with basic entry level college courses and multiculturalism and it was close by and small enough for me to adjust to college life.  I began receiving services through Michigan Rehabilitation Services with a Rehabilitation Counselor.  Like Occupational Therapy this profession has an emphasis on independence for individuals with disabilities.  Through these services I received tutoring and counseling to hone my skills as a college student.  I also received laptops, text books and tuition money for my undergraduate degree in Occupational Therapy.  I transferred to Baker College of Flint to complete my undergraduate degree.  It was not your typical Ivy League school or Big 10 university however it was accommodating and appropriate for me to earn a higher education.  Many people had doubts that I could graduate from such a tedious clinical program.  The instructors were very hands on, personable and saw my ability to succeed.  In my eyes, the education I received at Baker College was a better one than I could have received at a competitive university.

I graduated in 2004, 5 years after I graduated high school.  I interviewed at several facilities and worked a couple of different jobs before I became a school based Occupational Therapist in 2007.  My first day of work at Eaton Intermediate School District was also my first day of graduate school at Michigan State University.  I paid for my master’s degree on my own and graduated with a Master’s Degree in Rehabilitation Counseling in 2010.

In 1983 the goal of my pre-primary school teacher in the Otherwise Health Impaired room was for me to be a success during my education and the rest of my life.  At the end of my undergraduate degree this teacher sent me an email that stated: “you are a testimony that Early Intervention truly does work.” 

Today, the first set of young pre-school aged children I serviced in Early Childhood Programs are in third and fourth grades.  A few of them no longer require special education services and they are succeeding in mainstreamed classrooms.  I feel several of them have a success story similar to mine based on how far they have some since they were toddlers.  Will they all end up at Big 10 universities or Ivy League schools?  Only time will tell.  These children are allowed to aim for any dream or goal they please.  My hope is public services are still available to allow them to succeed with the goals they set for themselves.  Will they need trade programs, smaller community colleges and extra services with modifications? Perhaps.  The fact that these programs and services are available for teenagers and adults makes me proud to be an American.

 I am nothing but a testimony that public education services should not be tampered with.  I am employed, I pay taxes, I will buy cars as needed, and I have built a brand new home.  I am a young professional spending money at local venues, stores, and restaurants.  I am successful.  The public services that were provided to me have been nothing but a benefit regardless of what political party you tend to be affiliated with.   

If I would have been born at a different time with the level of cerebral palsy I have, I do feel my education and life would have been very different.  It saddens me that if I were currently in school ready to enter the adult world; my future would not be as bright as it has been thus far.  As a politician with power, are you willing to take that away from America’s future?