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Category: Special Needs

Alzheimer’s Has Changed My Life

Guillermo was born in Puerto Rico in 1952. He is one of 14 children. He is the only one who went to college and had a career. He served 28 years as a Corrections Officer in New York. This is my father and he has early onset Alzheimer’s Disease. For the last 8 or so years I have seen my father go from forgetful to unrecognizable. Alzheimer’s has taken a man I’ve always known and made him a complete stranger to me. Unfortunately, I’m also a stranger to him. It hurts like you wouldn’t believe. I knew it would happen, but you’re not ever prepared for it. I don’t think I’ll forget how I learned he’d forgotten who I was. We went to visit him and I asked him if he knew who I was, if he knew my name. He couldn’t tell me, he couldn’t even say that I was his daughter. I fought back tears, smiled and enjoyed the rest of our visit together as strangers. My father was a very strict, traditional, and typical Puerto Rican father and I hated him for it. I realize he did the absolute best he could as a widower with two young girls. All he wanted was the very best for his daughters, to see them succeed. I can not see myself in his shoes. There are so many things I wish I would’ve done before he got to this stage, mainly have a wedding. Now, I will never have my father walk me down the isle or have our father-daughter dance. Yes, he is still here, but is he really? I believe he’s in the middle stages now. He can’t be left alone, ever, and can only string 3 coherent words together. What isn’t coherent is stuttering, as if he’s looking for the words to say but can’t find them. He has also started speech and physical therapy. It’s hard to believe it’s going to get worse. My stepmother, his only caregiver, has been a saint during this difficult time. I know it’s been so hard for her, I can’t imagine watching the man you love totally disappear. She absolutely loves my father and I am so grateful for her. I wish I could do more to help and support her. I have watched the movie Still Alice. It’s about a woman who has early onset Alzheimer’s. We watch her deteriorate over time and how her family deals with it. It is not easy to watch someone go through this. I’ve kept my pain and thoughts about my father mostly to myself all this time. I mostly try not to think of it, I don’t let my mind’s eye go down all the possible roads of what late stages of this disease will look like for him. I can’t even read books about it (and I love to read!). I’ve gone as far as check them out of the library, but I can’t read them. Since I learned I became a stranger to my father I have been grieving as if he is already gone. I know this is a normal reaction, but  It still pains me to see him in such a state. The once determined, successful, almost tyrant of a man has been reduced to a baby in an adult body. Its heartbreaking. Thinking on what the final stage of Alzheimer’s will look like for him has me scared. This disease is terminal and will take his life, although I believe that part of him is gone already. My childhood memories with my father are not filled with sunshine, flowers or butterflies. It was quite the opposite. Regardless, my heart aches to see him like this. To have the very essence of who you are taken away from you is inhumane. My daughters won’t have the chance to know either of my parents. It’s an all around terrible circumstance that I’m still trying to wrap my mind around. I’m hoping to step out of this with peace in my heart…

When Enough is Enough

Way back in June I pulled Sakura out of therapy, both physical and occupational therapy. And boy did I get some crazy looks! In the special needs community it is unheard of to pull your child out of therapy for several months. Maybe for a week to recoup or go on vacation, but not 5 months. Well, we did and it has been wonderful. I have a friend who takes her son to 8 therapy sessions a week, another friend has 9 a week. I had 3 sessions to get Sakura to every week and it was killing me. Between school, homework and therapy I was at my wits end with it all. I was even throwing out homework the last couple of months of school, straight in the trash when we got home. The joy of not having to go to therapy these few months has been such a relief for all of us. To all you moms who are absolutely stressed out and maxed out, I would advise you to take a step back and breathe a little. This isn’t just for special needs moms. The mom going to activity after activity with their kids and hour after hour of homework at home, or the mom with 3 kids under 5 years old and 2 are in diapers take a step back and breathe. Give yourself a boundary, a margin for yourself. It’s alright to say “No more.” I’ve been getting better at saying that. After 5 months without therapy Sakura is doing great! When I did restart sessions with PT and OT her evaluations showed a marked improvement. I just smiled and reminded her therapists that she hasn’t been seen in 5 months, just playing like any other kid. Here is how I see it: she has a life long disability and in the grand scheme of life 5 months is just a tiny blip. I’m happy we spent it living a little more carefree and happy…

This is Our Normal

We have never known any different. We don’t know what it’s like to have just one child. We don’t know what it’s like to live without a lifelong diagnosis. This is our normal. To be honest I don’t think about it too much because it makes me sad. My daughter has brain damage and it will make the rest of her life that much harder. We don’t focus on that. We go about life as every other family, just with a few adjustments. I have two beautiful, amazing daughters who are absolute miracles. One has special needs, but what child doesn’t have needs? Some people have a lisp, some a lazy eye, some an awkward walking gait. We do what is best for our children. We make sure they don’t feel any less a person just because she has to use a wheelchair. We don’t want other people to pity us or feel badly for our situation. We want others to understand that our daughter is a person, bright and intelligent as any other 5 year old. Just yesterday she was passed over by our waitress because she saw her in the wheelchair. She asked Akira what she wanted and discussed her entire order with her. With Sakura she turned to me to ask for her order instead of asking her. She is perfectly capable of ordering her food and speaking with other people, but you’d have to talk to her to know that. Special needs is a broad term for those who live outside of what is deemed to be normal, but what’s normal? Life can be hard at times and we have to adapt our lives around the way the world is built, but everyone has hardships and you have to adapt as those hardships come along. We live life and we live well, very well…