Guardianship

SIBLING TIES BY PAIGE TALHELM

It astonishes me that complete strangers read a few documents and heard an hour of testimony, and made the decision for this human being that will affect the rest of his life… even though we are the ones who have been there for him, every single day, for 18 years.

What was the biggest day of your life? Was it your wedding? Your child being born? That big promotion you’d been working towards for years? At the age of 24, I have already had the biggest day of my life. Recently, my brother turned 18, so we had to file for guardianship. That was the biggest day of my life.

I feel like I have been preparing for this since Sammy was born. It has always been my vision to have him live with me once he got older. I wanted to do it to finally give my mom a break. I wanted to be able to give Sammy a somewhat normal, “away from home” experience, where his safety wasn’t a worry for any of us. I always knew I wanted to be Sammy’s future guardian and when it actually came time for the petition for guardianship, I couldn’t have been more certain that this was the right thing for me to do.

The process for filing for guardianship is painstakingly long and confusing. My mom spent months filing paperwork, tracking down old documents, visiting lawyers, taking Sammy to doctor check-ups, etc. All of this, in addition to her full time job and taking care of two kids.
I still have no idea how she keeps her head on straight with all of these stresses.

Sammy was appointed an advocate, which was probably the most emotional thing about this entire process. For one, having an appointed advocate made it all real. Although I love Sammy, it breaks my heart to know that he needs an appointed guardian because he is unable to make decisions for himself. Secondly, when I interviewed with the advocate to explain why I wanted to be his guardian, I came away from it so distraught. The advocate had questioned me about every little detail and I almost felt like I was a criminal. For someone who often takes off work for appointments, travels two hours to watch Sammy, and has dedicated her whole life to her brother’s cause – I came away from it feeling like I hadn’t done enough.

Finally the day came and I had never been more anxious in my life. Although I know that I am the rightful guardian if anything should ever happen to my mom, I had myself worrying – what if these strangers don’t see how close Sammy and I are? How much he means to me? What if the thing I had been working towards all these years didn’t work out? How would I deal with it? What would happen to Sammy?

I had never been to a court hearing. I could imagine it being like the shows I see on TV. It really was funny to me though, that this was a hearing for someone with special needs and when Sammy came in with his music on, they informed us that it was absolutely unacceptable. Sammy was put in a side room (still in the court room) with our cousin, where he could listen to his music freely and wander around. But really? Even though I understand that it may make things difficult to hear, this was HIS hearing. Let’s at least give him the decency to pretend that he could understand a little of what’s going on. Or even that we’re all here, based on the fact that someone has special needs – and couldn’t we make little exceptions?

So, after months of preparation… the hearing was over. Just like that. The decision wasn’t even made there that day in the courtroom; we had to wait almost two weeks to hear back! I was named alternative-co guardian rather than co-guardian. This means that if anything should happen to my mom, or Sammy’s dad, I would step in as the other guardian. However, our goal was to have all three of us as equal guardians. Although I am still a guardian, I was totally crushed.

This was the most important decision and plan of my life. I couldn’t believe that I wasn’t “good enough” to be one of Sammy’s main guardians. Although I am still a big part of his guardianship, I felt like I was named as a “just-in-case” guardian. Even though I know better, it was like the judge saw me as not doing what I needed to be doing to be his guardian. I am happy that there are things in place like this to keep people like Sammy safe and free from being taken advantage of, with them being over 18 with special needs. But it also astonishes me that complete strangers read a few documents and heard an hour of testimony, and made the decision for this human being that will affect the rest of his life…even though we are the ones who have been there for him, every single day, for 18 years.

Sammy will be taken care of, regardless of the guardianship hearing, and that’s all that matters. And I cannot wait for us to finally live together on our own together. •
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SIBLING TIES
Paige Talhelm, 23, lives in the Baltimore area and will begin pursuing her Master’s degree in Education of Autism & Pervasive Disorders at Johns Hopkins this coming fall. She is currently a Director at PALS Programs, an advocate for The Next Step Programs, and leads a  support group for siblings of individuals with disabilities. She is the older sister of two brothers, Sammy and Jack. Sammy, 17, has autism, is non-verbal, and is not toilet trained. He is the sole reason for Paige’s push to help individuals with special needs. She hopes to one day create a program for Autism treating adults over 21 with job searching, continuing education, learning life skills, and to increase their independence. Read more about Paige’s life as a sibling of autism on her blog: www.sammyssister.weebly.com

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