Growing up on the spectrum: Lessons Ive learned with Rachel

Hi everyone. Sunday is a special day in my family because my sister Rachel is turning 27!! Its funny how when you’re a kid the idea of you and your siblings aging never really crosses your mind. Its also funny how fast time goes by. I cant believe that she will be 27. I remember all her “big” birthdays, 16, 18, 21 and now I am sitting here writing this and thinking “she is in her late 20’s and in no time we will be having her 30th birthday”. I wanted to share with all of you some things that she has taught me in this life we have so here are some lessons from Rachel to Kelsey

  1. Empathy. Typically individuals on the spectrum do not feel empathy. My mama taught Rachel empathy from a very early age. I can remember if I was crying, Rachel would cry. At 6 years old I had no idea why she did that. It was because my mom gave her the cues that I was sad or hurt and how to act accordingly. To Rachel, that meant if sister cries, so do I. Writing this now makes me tear up.
  2. Memorization. As you all have read, or know. Movies were Rachel’s “zen” growing up. She and I could act and quote so many movies and still can to this day. I know that if she wasn’t around not only would I not be able to memorize like crazy but neither would our family. 🙂
  3. Fear. Never in my life have I felt such fear… I always worry. I always hope that she is ok and that nothing will harm her. I am always afraid that someone will make fun of her and she will know. Its a fear I would equate to that of a parent and a child.
  4. Hope. When my mama told me her diagnosis story and said that her doctors claimed “she will never walk, or talk or speak” I cannot imagine the feeling of hopelessness that could have caused. But then I look at Rachel, and I see all that she has overcome and does in her daily life and I cant feel anything but hope.
  5. Pride. I am one very proud big sister. There are days when I am so proud (like right now) and I just gush over her and I am sure people want to me shut up but my gosh, she is amazing!!!
  6. Work ethic. Rachel has only called in sick to work once and she tried to argue with my mama that she was okay to go to work. Mind you she had a fever and works in a retirement community so sickness can be life threatening. I called into work all the time! She goes to work with a smile on her face, on holidays, she works on Christmas and she is working on her birthday this sunday as well and she does it all with no complaints.
  7. Humor. Rachel is one of the funniest people I have ever met. She is the first one to say something outrageous and have me on the floor laughing. Sometimes she will look at me with this face she makes in the middle of family dinners and I will burst into fits of laughter.
  8. Fearlessness. Rachel believes that she can do ANYTHING!!! and while she does struggle she still tries and she will fight you until you have to tell her NO its not happening! Its amazing to see her strong will.
  9. Routine. Individuals with Autism thrive when on a routine. Rachel has had a routine since the moment my mom found out about her diagnosis. Because of this she has given me such a great example of how to keep myself (and get my puppy) on a routine, that I have a hard time straying from.
  10. Some days are harder than others. That’s the truth with life in general. When you have someone you love with a developmental disability there are days when you are just radiating pride and love and then there are days when she is frustrated and overstimulated and anxious thus making you frustrated, overstimulated and anxious. However, as I said before that is life, and I have learned that in those kind of events we talk about what’s wrong, we come up with a plan and then we move on and getting Rachel to deal with what’s wrong and then doing something that makes her happy is key.
  11. Patience. This is something you have to have when you have a sibling with special needs. This is something that my mom said I had my whole life with Rachel and honestly I cant ever remember have patience because I am a naturally impatient person. Its something that I continue to work on. When Rachel is upset (because she is very stubborn) its hard to reason with her without both of us either in tears or me having to be the big sister and stand my ground, even when her sweet face crumbles and her eyes well up with tears.
  12. Have fun. I think that society has such a stigma on people with disabilities. I am unsure as to why that is.. I always made sure that when a fun opportunity presented itself for Rachel that if I could go with her, or whatever that I would because she deserves to have the most fun and rich life imaginable. I was her date to multiple dances, including both of her proms. I was the first person to successfully take her to her first movie in the movie theater (which I sobbed during). I took her to get her first non-ear piercing (her nose) and my mama and I made her a deal that when she turns 30 I will be the one to take her to get matching sister tattoos!
  13. Milestones mean more. Milestones are huge for everyone, and I know that I may be bias but when Rachel hit her biggest milestones it was this wave of happiness, and assurance and pride that I don’t think everyone feels. When she first performed at her class Christmas show, I wrote about this previously but when I went to that show I expected a meltdown and for my mama, nana and I to have to take her home. When she held her little battery operated candle and sang We wish you a Merry Christmas and then yelled EVERYBODY, it took all that I had in me to not cry. That was the moment that I knew that she was blossoming and that she was going to grow up into the amazing woman she is now.
  14. Purpose. I’m not really good at any one thing. I am however good at understanding Rachel. I know when its been a bad day for her. I know when she wants to be included. I know her. If I never do anything with my life (minus what I am doing now) she will be my biggest accomplishment. While I am only her sister and I didn’t do a fraction of what my mama did, I am good at being her sister.
  15. Heartbreak. There are times when she has 100 percent broken my heart. I remember when I took her to get her nose pierced and the guy at the shop was explaining the release form to her I stepped in and said “Can I help her with this, she has Autism” and Rachel looked me square in the eyes, with a look on her face that I will never forget and said “I’m not Autistic anymore, that hurts my feelings” My heart broke and its breaks as I write this. I never want her to feel different.
  16. Acceptance. I have been extremely lucky that all of the people who I have brought around Rachel have been nothing but kind. It is hard to feel accepted by your peers when they have typically developing siblings but at a young age I stopped giving a shit and when Rachel and I were at the same school, I had her hang out with my friends and I. I also made it clear if they couldn’t hang with Rachel that we had no business being friends.
  17. Unconditional Love. Never in my life have I felt a love that I do for Rachel. Again I would compare it to a mother and child. There are days when I cannot believe how lucky I am that I get to be her sister. I get to have a different bond with my sister than many people do and I would not replace that for anything in the entire world.

These are just a few of the things she taught me. There are more everyday and I cannot wait to share more as they come.

 

 

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Rachel with her pup nephew Kevin ❤