Monthly Archives: September 2012

Los Straitjackets…you should go!

Let’s face it. September is a boring month. The excitement of going back to school is over, it’s starting to get cold, Halloween is still far away, and the kids are busy with extracurricular activities. What should you do? Well, if you’re like me you could use  a concert. I love all music! Parents, schedule a babysitter because there is a concert for Easter Seals coming up.

The history of this concert will tug on your heart strings. Jerry Morrow, a board member at Easter Seals DuPage Fox Valley Region has a daughter with a rare disease called Q4 deletion. She has received services from Easter Seals DuPage Fox Valley Region for 10 years.  Jerry went to a concert years ago because the lead guitarist was from his hometown of Albany, New York. They stayed in touch through the years and started the benefit concert three years ago. Morrow emphasizes that all the proceeds go to Easter Seals.

“My primary motivation to help is that it haunts me to think of children or families who may just quit seeking assistance for their child due to the difficult and sometimes oppressive complexity of  insurance, Medicaid etc. Not every family can cope equally to the challenges brought on from a child born with disabilities” he said.

He wants to emphasize that Easter Seals is a home for families who are struggling with having a member who is disabled and recognizes that people can lack financial or other resources and Easter Seals DFVR aims to do it’s best to help them. This story reflects the Easter Seals DuPage and Fox Valley Region’s mission statement when it says, “and to provide support for the families who love and care for them”.

The band is Los Straitjackets who are America’s #1 instrumental rock-n-roll combo are coming to town for Easter Seals. They will be at Fitzgerald’s in Berwyn on September 27th. The tickets are $50 per person. I know a lot of parents could use a night out before the craziness of Halloween…and the holidays (yikes!) arrive. Get your ticket today at the front desk or at http://www.eastersealsdfvr.org/jetset. See you there!

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Handle with Care: Caregiver Relationships

A person with a disability needs to acknowledge that he or she needs help with certain tasks. These needs for assistance can be temporary or permanent. Either way, therapists at Easter Seals will help clients gain maximum independence; however, we need people to help us along the way. Our parents may be the first to help individuals with disabilities with these tasks but as we mature into young adults, personal care attendants may become the ones helping us with these tasks. Since personal care attendants or PCAs perform incredibly intimate tasks for us, the relationship has to feel right.

The bond between a PCA and the person needing care should be equal. There should be equal respect, honesty, and caring within the relationship. The PCA should never abuse the person who needs care. I have to write that because it is so important, any form of abuse should NOT be part of the relationship. On a different note, the caregiver should respect how the person who needs care wants things done. They can respectfully suggest a different way; however, the individual with a disability should have the final call in how she or he wants things done. On the other hand, the person with the disability has to respect the PCA. He or she has to respect the assigned hours and needs of the PCA. The person with the disability cannot guilt the PCA into performing tasks that the PCA did not initially agree to. As time goes on, both parties will feel more comfortable with each other and because of the comfort level in the relationship, responsibilities may naturally increase.

Amy Liss and her assistantHonesty is also important in the relationship. For example, if the PCA is going to be late…just be honest! PCAs have lives of their own and may have to be late every now and then which is completely understandable. On the flip side, the person with the disability has to be honest and upfront about their needs. The person who needs care can’t minimize the workload or lie about tasks such as how much physical lifting is required. If you have respect and honesty, you will have a good foundation.

The question is: how do you find this? Frankly, I don’t have the magic potion but I can share my techniques from my life experiences. When I need to find a PCA, my mother goes on Craigslist and writes a very descriptive job posting. After she e-mails a few candidates, we choose the ones I will meet with and I see how our personalities align. If I don’t feel like we would be compatible, we move on and interview someone else. When I did find someone else that I knew was a great fit, my mother comes out and trains her. We tell her about my disability and they practice performing personal care tasks for me. After that, it’s our first day together and it could be the start of a relationship that last years.

I know that if you genuinely care about each other, the relationship will be amazing! To give you an example, my primary PCA, Kim started with me freshman year of college and is still with me because we had a foundation of caring that led to a great amount of respect and honesty. These relationships can lead to wonderful friendships if you handle them with care.

Fashion Show

The 32nd annual Easter Seals DuPage and Fox Valley Region Fashion Show is coming up! Easter Seals clients will have a chance to show off their new skills on the runway. Clients can wear whatever they choose…even costumes! This is a really great opportunity for clients to take pride in their achievements – especially what they have gained with their therapists. 

                                                                                                                                                                                                                    

                                                                                        

I was such a girly girl growing up that I know I would have loved to participate in a fashion show. I would have rolled down that runway in my wheelchair wearing my Snow White costume and loving every moment of it. Also, meeting a REAL model at the age of six would have blown my mind! My mom would have been taking pictures and shedding some tears as her daughter’s face was full of pride! I will be living vicariously through each of the clients and hope to see you there for a memorable day!

If you’re thinking of joining us as we celebrate clients’ personal achievements, we would love to see you there! It is September 22nd at Drury Lane. This afternoon of showcasing clients’ precious possibilities will also include a lovely luncheon. Along with the luncheon, there will be prizes. These prizes include gift baskets, wine, and gift cards. Go to: bit.ly/OZvm5B.

Picture Independence

For parents, it can be hard to imagine what an independent adult life is going to look like for their child who has a disability. It is difficult because parents may have to wait until late into the teenage years to fully understand the limitations and abilities their child has. My family and I had to go through the same process of waiting.

When I was little, it was very difficult for my parents to picture me as an independent woman. “What is she going to be able to do” and “what type of help will she need?” they asked. The answers slowly revealed themselves throughout middle school and high school. There were some things I did need help with, for example, going to the restroom, feeding, dressing, and other personal care tasks. However, there were times when it was clear that I wanted to be independent and the fact that I had the ability made my family and I feel fortunate. So, as freshmen year of college approached my family and I outlined times of the day I would need help. The times I needed help were getting up in the morning, breakfast, lunch, dinner, and helping me with my bedtime routine. So, here is what my personal care attendant schedule looks like now:

8:00am-2pm: Kim gets me dressed, feeds me breakfast, takes me to work, feeds me lunch, drives me home

5:00pm: Depending on the day, Jen or Laura come and feed me dinner and I may ask them to help me with errands depending on how long they are scheduled to stay.

11:00pm: My roommate who is also an assistant puts me to bed.

 

Depending on what hours my assistants want, I oftentimes have to sacrifice some privacy or time to myself. It is understandable that they don’t want to drive for just one or two hours, they may want more. The relationship with a person with a disability and their assistant is unique. They have to have empathy for one another. In my eyes, the parent’s job is to oversee that everything is fair and right. For example, the person with the disability should never be abused in any way. However, the assistant should be respected and should never do something out of guilt such as working more hours without notice.

I hope this helps parents see possibilities for their child to be independent. I realize the definition of maximum independence is different for everyone, however, I hope my story gives parents hope and an idea of what lies ahead for their child which is their definition of maximum independence.