‘I Really Hope He’s Proud Of Me’

Photo Credit: Emily Hoff

Today’s blog post is a little different as our featured person is an amazing young woman who knows first hand the impact dementia can have on a family, as well as the attitudes people face all because they have special or additional needs.

Emily Hoff lives in the USA and since she was in 9th grade has been part of  ‘The Buddy Club’, a volunteer programme that lets kids, and teenagers with special needs to do everything everyone else does by pairing them up with a friend, or buddy while having fun. We at the DC want to give her a special shout for putting other people’s needs first!

Emily was kind enough to share her story with me so I’m going to let her tell it, in her own words with just the odd explanation so that everything makes sense to our readers. Once again Emily, thank you so much you are amazing.

“I joined Buddy Club in the ninth grade because I love helping people. When I was in ninth grade, I was telling one of my teachers about how I planned on volunteering in a dementia unit in a hospital. Because she saw I loved helping others she recommended that I should join the Buddy Club. Even now that I have graduated high school (Class of 2016) and am in college, I am still a member of Buddy Club. After only two months of being a buddy, Buddy Club made me want to be a Life Skills teacher.

The other buddies and I do many activities with the Life Skills students such as cooking, baking, field trips, going to dances, in-school and out-of-school events, bowling, parties,  and participating in an annual Lip Sync Show. We also help them with and buy from their self-run snack stand, Coco Loco Cafe.

During my junior and senior year of high school, I was elected as the first Buddy Club President. Buddy Club is the best and most life-changing experience I have ever had. Buddy Club is my happy place. Buddy Club is what made me very dedicated the special needs community.”

Photo Credit: Emily Hoff

I asked Emily about her experiences of the treatment people with special needs have and her comments were illuminating especially when it came to how someone with say Autism is treated in College.

“There are most definitely very few people out there who are tolerant of those with special needs. More people, especially teachers, college professors, and students of all ages, need to be taught  how to be accepting of and how to handle students and peers with special needs of any age.

Not all, but many teachers and college professors don’t  have enough patience with these students and are refusing to follow their accommodations when they are required to follow this written documentation by law. Whether a student with special needs has  extended time on tests, using a device to audio record classroom lectures, or taking a test in an environment with reduced distractions teachers should make allowances.

Educators do not want to follow these because they claim it makes their job harder, but I honestly don’t see how; no matter how many students with special needs they have. There are even Special Education teachers who refuse to follow IEPs (Individual Education Plan). There just needs to be more training  about how to handle the students with these needs.

In addition, teachers should be teaching all of their students, no matter how old they are, to be accepting of anyone with special needs. I am pleased that in today’s generation the topic of special needs is spoken about in Early Childhood Education settings because I do not remember being taught this as a child.

There are now more Special Educational Needs programs in schools in my state, Pennsylvania, than there were in my childhood as far I know, but some schools still do not have enough of these services. According to a poll that I posted on my advocacy page, 58% of my followers voted that there are not many Special Education programs in schools in America and 42% voted that there are many programs for SEN.”

I asked Emily for her favourite inspirational quote as her Instagram is filled with them! She did not disappoint either, picking a quote by good old President Lincoln himself. 

“My favorite go-to quote for life is a quote by Abraham Lincoln: “I walk slowly, but I never walk backwards.” I can relate to this quote personally and I’m sure that the Life Skills students that I have worked with through Buddy Club and everyone in the special needs community can relate to this quote too. WHEN a person with or without special needs reaches an achievement does not matter. What matters is IF they reach the achievement and that they never give up.”

Emily and I also spoke about the language people use when addressing someone with Autism, special needs and even Dementia and how important it is to be respectful at all times.

“I definitely think that derogatory language and comments about autism and any disability are still an issue, especially in schools. The worst one is the R-word. As I discussed with family recently, the word “retarded” actually used to be okay because it was used in the diagnosis of “mental retardation.” Sadly, many people changed this word to be used as an insult so it lost its original meaning. Now it offends families and friends with loved ones with special needs and that is why it is now called an intellectual disability.

Derogatory language directed towards the special needs community is often used in bullying. In my school district when I was in middle school, students outside of Special Education started calling the students in Special Education “speds” and even when they reported it to their teachers absolutely nothing was done about it ever.

The special needs community is not only insulted through derogatory phrases, but rude comments too such as, “What is wrong with them?” and disrespectful remarks about their behavior and developmental delays. You can’t always tell if a person has special needs and people with special needs know that and so do I, but what individuals need to do before judging the special needs community is think.

Think about that person and their behavior. Think about “that girl talking back to her parent(s)” in public. I am not saying that their problems are an excuse for their behavior, but people with special needs have major challenges that are sometimes invisible. No stranger knows the full story of that person and they may be seeing someone with special needs when that person is at the end of their rope.”

Photo Credit: Emily Hoff

People need to stop judging that person and/or blaming their parents for their behavior. They need to think that ‘that person may have special needs’ and be understanding and start having some empathy. Many people think that saying these derogatory phrases and comments are some sort of joke and do not take into consideration that saying these things can be very hurtful; they need to take these phrases and comments seriously for the purpose of being respectful.

Photo Credit: Emily Hoff

Our community also needs to be educated more on how to respect the special needs community and what language to use to respect them. This includes putting the person first before their disability when talking about them. In addition, children and people with special needs should not be seen as “abnormal” because they are normal. Actually, define normal because we all have our differences! Children and people with special needs just want to be treated with respect, acceptance, and be included like everyone else and they should be. If people would do this, they would find out that these unique people are just like them

We then spoke about Emily’s time volunteering on a Dementia unit and the time spent caring for her dear ‘pop’ or grandfather when sadly he developed Alzheimer’s around seven years ago. 

“I started volunteering in the Dementia unit in St. Joseph’s Manor, a residential nursing home where older adults live, when I was fourteen years old because of my love for helping people and did it for three years. The most valuable things that I learned in those years were how to be even more nurturing, all while Dementia, and how to take care of adults with Dementia. To interact with the residents, I would have conversations with them and do activities such as cooking, baking, singing, playing games, and arts and crafts. My care giving skills included wheeling and walking the residents to lunch, feeding some of them, comforting residents, and giving some of the residents their non prescriptive medications.

I felt that the residents with Dementia were looked after perfectly. They were very well taken care of and supervised by the nurses and recreational therapists. They were respected too. The nurses and recreational therapists always made sure that the residents with Dementia were fed, given their medication, occupied with things to do, their hygiene was cared for, were supervised, and were safe..

I didn’t really talk to my Pop (my grandfather) about his condition, but some of my other relatives did for a brief time such as my dad and his siblings.  They would tell him that he was told things, but that he then forgot due to his condition getting worse. After this, he started forgetting almost everything due to his short term memory loss.

When he went into a nursing home, challenges began when nurses were telling my dad to tell my Pop that his challenging behavior was unacceptable. My dad said that he would try to talk to him about it, but explained that it probably wouldn’t change anything because those behaviors were being caused by dementia so he couldn’t help it. He ended up transferring to a different, much better nursing home for personal reasons.

I do also think that the practical side of caring for someone needs to be talked about more. Adults with dementia eventually lose their physical ability and memory of the importance to independently take care of themselves in most ways, such as taking a shower, hair care, brushing teeth, and feeding themselves. Obviously, this isn’t their fault but they do also need to be monitored for their safety to prevent wandering.

When they lose their ability to self-care, they need a caregiver or other person to help them do so. These self-care tasks are not only important due to their condition, but also for their general health. As my Pop’s death got closer, he could no longer feed himself and would refuse to eat when most people fed him. Yet, for some reason whenever I fed him any food or drinks he always ate it so I ended up being the one who always fed him for the rest of his life. I truly believe that the reason he only ate when I fed him was because he was doing it for me.

People definitely struggle to understand and engage with adults with dementia for the same reason they do with anyone else with any other type of special needs. I have observed that people are more accepting of children and people with life-threatening special needs, especially cancer, than developmental disabilities and dementia because they fail to realize that chronic and terminal illnesses are considered special needs too.

When the people who are accepting of those with cancer are ignorant to adults with dementia, they are forgetting this illness is always terminal. I care about those chronic and terminal illnesses too, especially cancer, but people need to treat adults with dementia like everyone else because even though dementia affects their mental health, they still want to be treated like everyone else and know when they are being disrespected. They should not be respected out of sympathy of their disease; they should be respected because respect is a basic human right.”

Finally, I asked Emily how she thought her Pop would react to everything she’s done and been a part of since starting out with The Buddy Club. In answer, she said this...

“My Pop had a tough fight with dementia for six years and passed away two years ago. When he passed away, I said I love and will miss him forever until the day I see him again. I think about him every day since his passing and am given signs everyday that he is watching over me. Three things that I would tell him about my life if he were still alive would be about what I am doing in college, my advocacy page, and all of the volunteering I am doing to help the special needs community. I really hope he is proud of me.”

Thank you so much Emily for sharing your story with us at the DC. I can tell you one thing, your Pop would be very, very proud of his granddaughter! 

Photo Credit: Emily Hoff