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I can hear the saxophone in my head energetically playing the song "Pick up the pieces" ( in case you need a flashback to 1974) as I write the title to my latest blog post.  However, picking up the pieces in life is not nearly as spunky,funky or fun as this golden oldie.  How do you pick up the pieces when you have a child with a disability?  And often this is not just a one time event, but often it occurs over and over again. Sometimes the pieces are bigger than others.  Like when you first receive the diagnosis that your child has a disability, and often again and again as disappointments come into you and your child's life.  Sometimes the pieces are bigger than others.  Recently I experienced a four day period where my daughter walked out of her high school for the last time, she turned 21 years old, a potential roommate decided on someone else to live with, and she received a rejection letter for acceptance into a post-secondary internship program.  This was our plan.  She was to have her summer and then begin this post-secondary program in the fall.  I am her mother, her best ally, her advocate, her fierce Mama Bear.  It was The Plan that she would begin this program in the fall.  Suddenly, no matter how passionate, vocal, active, or involved I was, it didn't make a difference. What now?

  • First and foremost, I have a very strong faith in God.  I believe that He has the very best plan for my daughter.  I continue to cling to the Bible verse in Jeremiah 29:11 "For I know the plans I have for you...plans to give you a hope and a future" and am reminded of Proverbs 16:9 "In his heart a man plans his course, but the Lord determines his steps".  God is the one who designs the best plan, not me.  
  • Secondly, enlist the support of family and friends who listen.  Don't read over that too quickly. There are friends who care, but not all friends want to truly listen and empathize. Although many have good intentions, all too often they may be afraid of not knowing what to say or do, so they try to "fix" the problem or minimize it.  If this is not enough, it is OKAY to seek professional counseling.  
  • Thirdly, go back to the drawing board.  Who are your sources of support and your resources?  Use these supports.  In my case I immediately scheduled a meeting with my case manager.
  • Lastly, there are always options.  Research, network, and explore.  ASK resource is a great place to start.  And never, ever give up.  

Below are some of the resources that I used as I went back to my own "drawing board".

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Comment by Matt Bockert on June 30, 2014 at 11:23pm
Persistence is often needed when advocating for yourself or others. A couple years ago, my brother very much needed to start doing a daily nebulizer treatment to help his COPD. Unfortunately, there were insurance issues that prevented him from getting one thing without proof of the other -- he couldn't get the device without proof of the medicine, and couldn't get the medicine without proof of the device. It was an endless circle that caused months of frustration. But after hours of phone calls over several weeks, my mom and brother finally found a solution. Never give up!
Comment by Joanna Schroeder on June 25, 2014 at 2:08pm

Lisa - this is a great message about never giving up. It seems to be that "experts" often give people with disabilities limits but each person still has the potential to do more - be more, even if it's not what you expected. Would another possible resource for you as you go back to the drawing board be the Iowa Department of Education's Adult Career Education and planning?

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