Hi all, I was just informed that Bobiam is offering a special Jimmysfans discount on the t-shirts that he designed. If you enter, Jimmysfans in the coupon section on the Bobiam website, you'll receive a 15% discount off your shopping cart!
$1 for each T-Shirt Sold will be donated to the Amplatz Children's Hospital at the University of Minnesota.
Sunday, June 26, 2011
July 6th is just around the corner. For Jimmy, this means that he will be 18 years old. For most soon to be adults, ones 18th birthday is very exciting. For Jimmy, it may feel like just another day with a chance to go to Valley Fair. For me, Jimmy's birthdays have been a more sad than happy occasion. He didn't have birthday parties as he didn't really understand them, he wasn't really interested in gifts and he couldn't eat the "party" food. Normal teenage milestones for Jimmy have not been marked with the epic excitement of a Driver's License but with a mothers remorse at what could have been. His birthdays remind me that another year has passed where I have failed to help him overcome his challenges with autism. It is a reminder that I have not been able to change his life as I had hoped….drivers license, girlfriends, voting, college, etc… maybe, my expectations and hopes were not firmly grounded. Certainly, Jimmy has positively changed my life more than I have changed his life. It is through Jimmy's art that I am seeing his world differently. This July 6th, I am determined to
approach the day differently.
When Jimmy was diagnosed nearly 16 years ago, we were given marching orders to set in place his services. Brian and I lined up resources with Fraser (www.fraser.org), our school district, Speech Therapy, Occupational Therapy and additional help for our five children who were all under the age 5 1/2. Brian took a leave of absence from his career to help us manage the reams of information that we needed to decipher. We made our plan and I embarked on a mission to understand, fix, repair and restore Jimmy as best I could. I followed the instructions directed to us by those in the know. One of the most daunting tasks was the "packet" we received from Dakota County. It was so overwhelming. I'd begin reading the information that was intended to be helpful and put it down in tears thinking how can we be in this position. Educators and Therapists insisted that we continue with the paper work to make sure that Jimmy was protected and services through the County were lined up. Honestly, I hoped that we wouldn't need their help because Jimmy would grow out of his challenges. Well, the long and short of it is that we found out we didn't qualify for funding for services and that we would pay for nearly all of Jimmy's care ourselves. In fact, the insurance companies didn't even want to contribute to his care declining services at Fraser and even ear infections. The battles were fierce. It was an overwhelming time for us and many many other families who had children in the spectrum. The upside is that I never thought about the process with County again until last fall when our school district reminded us that Jimmy would be 18 soon….they asked about Jimmy's social worker…...we didn’t' have one. Here we go again, I was overwhelmed before we started.
So, what does turning 18 mean for your family if you have autism? The documents that I thought I had avoided were back on my desk. The task that I had postponed for 16 years was back with a vengeance and I felt less capable of managing the emotion of what this means for Jimmy, Brian, me and our other kids than I did when Jimmy was 2. The process is full of lawyers, coordination of wills, designations of guardianship, court dates and many "what ifs". Perhaps, the real challenge is managing through the emotion of what turning 18 means for your family if you can't care for yourself. I hadn't thought about it this way until recently.
A few weeks ago, we met with our attorney to discuss some of the final pieces of the process before we proceed to court to be named Jimmy's Guardians prior to his 18th birthday. We were discussing the ins and outs of guardianship and social security. I found myself beginning to tear up. I excused myself from the meeting and wept in the ladies room by myself. I felt, how is it possible that a judge will decide if I can continue to care for my son? It seemed so frightening. What if the judge takes Jimmy's movie lines seriously? We joke about it but…what if? I understand that this process is intended to protect and provide….it just doesn't "feel" that way to me. We have been working with people in the County that wish to be helpful, attorneys who know their roles and all are empathetic. This seems to be more about a mother's loss and reality check than it is about an overwhelming and daunting process.
Anxiety and anticipation are present in the unknown. Jimmy isn't aware or bothered by what the family faces on his 18th birthday. He is looking forward to going to Valley Fair on July 6th. He isn't concerned about going before a judge because he doesn’t know what it means. I know that I will be anxious and will unlikely be able to avoid a deep sense of sadness, loss and failure. I had hoped that my skills as a task master, instruction follower, resource builder and loving mother would all have prevented us from the need to go through this process that we are in. Perhaps, my expectations and hopes were misguided. Yet, those expectations and hopes have helped me positively persevere through the last 16 years.
Jimmy is defining who he is an artist and loving human being who also has autism. He is creating a future for himself that is clearly different than how I had imaged. He won't be able to care for himself yet he has many valuable and unique skills. He has already positively impacted many lives. I am learning to take his direction which his siblings seem to see easier than I do. Whoever said that my expectations were right?
Through Jimmy's art, he has created a bright future for himself and I am learning how to follow his lead rather than insert my own expectations. I am determined to fight my natural sadness on his birthday with a sense optimism for his future. Each time I look at one of his art pieces, I feel a sense of peace, joy, innocence, pride, and optimism. So, on July 6th, 2011, I plan to celebrate Jimmy's 18th birthday with the same sense of joy and peace that I see in his art and let go of a the sadness that has been hallmark for me on that day.