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 ❤

 

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Growing up on the spectrum part 8

Hi readers! I felt compelled to write about my sister again as I am watching the show Parenthood. If you haven’t seen it let me bring you up to speed. Its about a family and real problems and real dreams and how they interact with each other. There is a little boy named Max who is diagnosed with Aspergers Syndrome which is on the Autism Spectrum. In the episode I just watched Max is setting up his room for his sleepover with his cousin Jabar. His uncle Crosby (Jabars dad) comes to deliver news that Jabar and his mom are not able to make into town from their New York home this week and that plan had to be changed. Enter the meltdown. Max begins to yell and “clear” his legos off his table. (Clearing is a form of aggression in which the individual throws, slides or removes items from a particular space). I have seen these many, many times and in that moment when Max begins to meltdown and the other characters, minus his tutor begin to panic I knew exactly how it should be dealt with, and how to bring him back down to his baseline. I sympathize with this character so much and I find myself wanting to jump in this show and work with this child.

Its funny to me that I can deal with a child who is on the spectrum. A child who is aggressive, or having a meltdown better than a typically developing child. I have 2 nieces and 3 nephews (3 of which are my God Children) and I always feel bad because I feel like I don’t know how to relate to them so I try to be extra attentive and show them the amount of love and attention that I would show Rachel. The 5 of them amaze me the same way Rachel does yet somehow it is drastically different, if that makes sense.

Something I worry about with my future children is that if they are typically developing, will I not be able to relate to them? I am so used to working and relating to kids with special needs that I don’t know how I will be when I am a mom and if they are typically developing.

Do any of you have experience with special needs kids???

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growing up on the spectrum part 7

Hey everyone, I felt really compelled to write this story as is one of the hardest to write and one of the lesser known.

The day she got lost…

When I was 12 and in the beginning of my 6th grade year I had a typical day. Went to school, anticipated the end of the day and when 3:30 pm rolled around I was ecstatic. Once the bus left the school  and we were in the middle of rush hour small town traffic my friend turned to me and said “hey that looks like your sister.” I completely ignored her comment because I knew that Rachel was on the bus on her way home. When I was dropped at my stop I made the 10 minute walk up to my house only to be greeted by my mama in tears.

“They can’t find Rachel”…

In that moment my entire world shattered and I began to lose my grip on reality. How could the school lose a 10 year old Autistic girl? Well this is how…

Apparently the bus driver, a woman whose name I cannot remember, called the school and said she would be running about 20 minutes late. Rachel knew she needed to get home, so what did she do? She began to walk. She ended up walking from her school to Rattlesnake road, which according to google maps is only  a 3.1 mile walk averaging about an hours time. We had everyone in our family out looking for her. I remember when my mama was on the phone with 911 her describing what Rachel was wearing and that was an ever harder thing to hear. Rachel was obsessed with purple at the time so a lot of what she wore was purple. She had on a white shirt with purple shorts and white tennis shoes with white and purple socks. I remember hearing that description and my heart breaking. We were fearing the worst at this point. I was on the phone calling friends who may have seen her. It was at almost an hour after I had been home that I told my mama I was going to walk down to the end of the road just in case she did walk home.

During this walk all I remember was praying. Praying that she was okay. Praying for her to come home and praying for all the courage I could get in case something had happened to her, I was ready to be a rock. A car that I recognized was driving up the road towards me. When the driver came into focus I realized it was my mama’s boss and long time family friend Tommie. When she got up to me she rolled down her window and said “Look who I found” When I opened the door there was Rae, in her purple and white outfit. She was scarlet red from the heat of walking and even more sweaty. I remember grabbing her and hugging her and asking “what the hell were you thinking” Never had I had such a moment of total and complete bliss in that moment holding onto her. When Tommie got to our house and my mama saw Rachel she  hugged Rae, sent she and I inside to get Rachel changed and get some water. I however sat outside and watched as my mom held Tommie and sobbed uncontrollably. About an hour later my Aunt Nana and some cousins came by to check on Rachel. Our cousin Victoria, who is closest to me in age told me about how when she was trying to ask people if they had seen Rachel, she was crying so hard nobody could understand what she was saying. People had seen her and mentioned the direction she was going. The crazy part is, Rachel knew exactly how to get home to us. She knew when to cross the street in traffic. She knew what landmarks she had to pass. She knew she needed to get home.

Never before in my life have I been more terrified. You will never understand the feeling you get when you hear  your special needs sister is lost. I am not a mother nor do I know how my mama felt when she received the news but I know how I felt.. I felt weak, and sick. I felt 100 percent helpless. I remember thinking what if I never see her beautiful face again? What if I never get to make her laugh? All I wanted was to see her in her purple and white outfit.

This happened 15 years ago and I remember it like it was yesterday. I remember everything. In all my life I have never felt so insanely lucky that she was found safe. I never knew fear until that day. Having her in my life has been such a blessing in so many ways. I thank God, Buddha, Zeus, Gaia, anybody for keeping her safe and bringing her home.

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Growing up on the Spectrum part 6

 

Hey readers, I was watching a show that I am hooked on called Born This Way about a group of individuals with Down Syndrome who live their lives magnificently. The episode I am watching shows the relationship between one of the girls Rachel and her typically developing brother Jonathan. It made me really miss my Rachel and I was inspired to talk some more about her.

Watching her Grow…

Over the weekend I was house sitting for a long time family friend. Funnily enough one of the friends knew Rachel before we knew her. She worked with Rachel through school. This family has been such a blessing in our lives and have accepted Rachel with such ease. I always try to invite her to stay with me at least one night. We watch movies, try out new shows on Netflix and play Wii. As I sit with her and see how amazing and beautiful she is it literally makes my heart hurt. To see how far she has come and how much she knows and understands is amazing and shes amazing! She kicked my butt in Wii sports (I won at baseball!) I introduced her to a kids show/movie line called Monster High because I find it so fun and cute! We started Once upon a Time so that she could have a new show to watch on Netflix. I love the time we have just us because I get to hear her voice and see her emotions without any other distractions.

Taking a Breath…

There are always bad days. There are times when I get so frustrated with her because sometimes she can be so stubborn and I end up getting really short and snippy. When this happens I always realize right away that I need to take a step back, apologize for getting pissy and realize that she is doing her very best every day. She is the only person I know who gives 110% everyday in all that she does. If everyone lived like Rachel we would be Kings and Queens.

Being the Older sibling…

Being the older sibling is a blessing and a curse. I love that I have someone who looks up to me but my “mama”bear instinct kicks into overdrive. Most older siblings do protect their younger siblings but when you have a brother or a sister who has any kind of disability it makes that instinct a thousand times stronger. I love that she is my little sister and I would never change that, but I have to learn to step back and let her learn her independence and strength.

Ease…

When Rachel was diagnosed, my mama told my dad that “one day she will be blessed with ease”( writing this quote brings me to tears) and on the day of her high school graduation she received a card in the mail from our daddy and in it he gave her praise but then mentioned that mama said “she will be blessed with ease.” Growing up watching over her, protecting her, loving her and seeing the woman she grew up being makes me realize that this quote is so true and although there will always be struggles for her, and for our family she really was blessed… and so were we.

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Check back for more about Rachel

Growing up on the Spectrum part 4

Hey friends, I wanted to do another post about growing up with my beautiful sister, this one is more about me this time…

Being an “only” child.

Growing up with a special needs sibling is a wonderful and beautiful adventure but if I am being totally honest, it can be lonely. Unlike my peers who have brothers and sisters who they fought with or played with, I couldn’t fight with Rachel. Not that I ever wanted to but I never understood what it was like to argue with a sibling. I remember I had a friend who would fight with her brother and I would laugh because I had never seen siblings fight.

Playing wasn’t like how you would play with your friends at recess. Rachel and I would reenact parts from our favorite movies or sing songs. I never wanted to play outside because I was afraid something would happen to Rachel.I always wanted to protect her from the world. I am still very guilty of that.

I never wanted to push her outside of her comfort zone because I knew she could meltdown. Meltdowns are exhausting for all involved and  while you need to change-up routine with people on the spectrum, seeing Rachel meltdown kills me. It physically hurts my heart.

I am not an only child by any means but my mama raised two very different children, two very different ways in one household by herself. That is something to brag about. She had to make sure Rachel was very well taken care of while taking care of me too.

Many people always talk about how wonderful my mama and I are but it really has nothing to do with being wonderful. It has to do with loving this person so much that we would do anything to keep her smiling and make sure she is taken care of. My mama has said I had to step back and let Rachel have everything before me, but I don’t look at it like that. I knew from a young age that this little person needed help and as her big sister that meant that i needed to help out with mom and school and social activities. She is my best friend and being able to see her grow into the fierce woman she has become has been so worth it!

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This is her giving her Maid of Honor speech at my wedding.

Growing up on the spectrum part 3

Hey friends. Today is the most amazing girl in the worlds birthday. I already did a post on her but I enjoy writing about her and what life is like with her so much, so here is part 3.

Seeing Relationships with her…

I have had so many AMAZING people come into my life who have done nothing but accept her and enjoy being around her. It’s hard to look at your friends lives and see what a typically developing sibling relationship is like because I have never really had that. However Rachel has single handedly found her way into those people hearts. Some of the most special relationships are ones that to this day make me feel so blessed to have these people in her life.

Rachel and Jamie: Jamie is my best and longest friend. I have known her since kindergarten and she has done nothing but selflessly love Rachel the way that I do. Jamie has seen the good and bad. The milestones and meltdowns. To this day when she sees Rachel it is always a pass at me, going in to give Rachel some love. Jamie was there for literally everything in Rachel’s life and I thank God for that because she is a whole new dynamic and very important piece in Rachel’s world. She is another sister to her.

Rachel and Josh: Josh was my best friend who happened to live with us for a year. Josh was very kind to Rachel, always making sure that she was included in everything we did. He took such an interest in her from the beginning and was a brother to her. It was a totally different dynamic than she was used to but she grew to love Josh.

Rachel and Brittany: Brittany was another one of my best friends. We were insperable. I remember the first time she stayed over at my house I mentioned that Rachel was on the spectrum and she just kind of shrugged her shoulders like what I was saying didn’t matter because she had already made her mind up about her. She was instantly kind and treated Rachel as an equal. She didn’t talk to her like she had Autism but like she would talk to me and she took an active interest in getting to know her.

Rachel and Brittney: Brittney is the older sister of my best friend Jamie. She was a year ahead of Jamie and I. This family accepted me as one of their own but they also accepted Rachel. I can remember Rachel coming over one afternoon with me to Jamie’s house and Brittney asked Rachel if she wanted to watch a movie in her room. Britt had a T.V in her room so it was the best room in the house. She walked Rachel in, tucked her in and gave Rachel options as to what she wanted to watch. I never appriciated something so much as this gesture. It almost brings me to tears because she had no hesitation with Brittney, or any of Jamie’s family and knowing that Britt took the time to make her comfortable was a comforting feeling for me and I am forever grateful.

Rachel and Kyle: This relationship is one of Jokes and laughter. When I first got together with Kyle I was unsure of how this relationship would work. I was so in love and wanting to marry this boy (at 18 yes I did!) but because he had no clue of special needs and was not exposed to it, i knew if he did not mesh with Rachel It wouldn’t work. However, it really does work! It took time because he is shy and so is Rachel, but now she is so attentive to him and always aknowlages him as he does for her. There is so much sass between the two of them and I was recently told from a family member that on our step dads birthday, Kyle and I were talking and she tapped them on the shoulder and said “They are so good.” That is huge! She adores her “brother-in-law” Kyle.

Rachel and Ray: My two Ray (e)s. This was probably one of the easiest relationships of the bunch. Rays dad was Rachel’s school bus driver and I had known Ray for a good portion of my life through school. He understood to approach Rachel calmly and warmly. He didn’t push to make her talk he just let her talk to him and responded when it was needed. To this day, I love watching them interact beacuse, he just gets it! He treats her like she was his sister.

Rachel and Sharon: This was also another easy relationship because Sharon’s mom worked in Special Needs and also because she has such a big heart. She always made sure to find Rachel at school or somewhere in my house and say “hey dude” with a big hug. Sharon and I call each other “Mer” (its a LOOONNGG story) and whenever she comes by Rachel yells “Hey Mer!”

Rachel and Ashley: Ashley is such a warm, kind and wise soul. I knew that introducing them was going to be smooth sailing. She was warm in talking to her but did not try and hug her. I appriciated this because hugs can be so intrusive, but she let Rachel get to know her, become comfortable and treated her like a best friend. They are now very close and Rachel always asks “How’s Ash?!?”

Rachel and Michelle: Michelle is Ray’s wife and one of the most wonderful people in my world. When we expalined Rachel to her she nodded her head with a smile and just loved her. I remember Rachel standing around listening to all of us talk and Michelle walked over, put her arm on Rachel’s back and just began to talk to her. She asked her questions about her day, about her life and when Ray and Michelle became engaged she told Rachel that she would now be Auntie Rae.

Rachel and Desi and Robert: This is a very special relationship because these are my God babies and Rachels Niece and Nephew. These children are miraculous and were instantly kind. They talked to her about movies, because they knew how much she and I loved them. They made her laugh and she made them laugh. Rachel has told me how much she loves “those kiddos” and seeing how selfless they are with her is beautiful.

All these relationships have helped shape Rachel. They have made her learn and grow. This was a very emotional post for me because she is so loved by everyone. All of these people have let her into their hearts with no questions. You all will never know what this means to me. Thank you for allowing her to get to know you. To learn how to interact with you and for just being kind. I will never know how to repay any of you for this.