Growing up on the Spectrum Part 2

Milestones and Phases…

Hey everyone, I got a wonderful response from my last post about my sister Rachel, who is on the spectrum so I thought why not tell you a little more about her.

With the spectrum comes Routine. This is something that is earth shattering when changed, however in order for my sister and many others on the spectrum it is important to change up the routine at random to teach the skills necessary to act appropriately and cope. Rachel, for the longest time thrived on her routine and still implements one today, however she has learned that your day does not go as planned all the time and that’s okay. She used to have full-blown meltdowns of tears and anger but now, my mama can tell her something is changing and that it will be okay. Rachel has learned to accept the change and roll with it.

Milestones in any childs life are huge. Milestones with a special needs child is even more huge. The ones I remember fondly are…

Rachel’s First word… Rachel did not talk at a typical age because she wasnt typical, She was 4 or 5 if I have my timeline correct and her first word was blue! Kids on the spectrum tend to perseverate or fixate on something for a period of time until the fixation changes. Rachels was a blue lotion bottle. Wherever Rachel was so was the bottle and when she finally spoke the Blue, it came out “badoo”. As time went on the fixation changed to the color purple then orange. For a long time she was hooked on the Letter O as well. she also fixated on people. For a long time it was Anthony Edwards on E.R, Then it was Jim Carey and now she loves House.

Rachel’s first performance. When Rachel was in third grade she was blessed with a teacher named Matt who was her special needs teacher, but she also mainstreamed in a regular class as well. Mary, her mainstream teacher had her class put on a Christmas performance where the kids made christmas crafts, and sang. I remember my mama, nana and I went to see what the class was putting on and towards the end, a shy little Rachel walked up on the tiny stage with a flameless candle and sang..

We wish you a Merry Christmas, We wish you a Merry Christmas, We wish you a Merry Christmas and a Happy New Year, EVERYBODY! Everyone stood up sang and clapped for her. This was HUGE!

Rachel’s High School Graduation. In 2009 Rachel walked across the stage with her cap and gown and a diploma in hand. When she was diagnosed they said she would never do anything (in so many words).. Wish they could have seen her then, it would have slapped them in the face!

Rachel’s First Movie at the Theater. For years both my mom and dad tried to take Rachel to the movies. It never worked. It was overwhelming for her. It was too loud, and visually just too much. When The Dark Knight came out and after it was reported Heath Ledger had died Rachel asked if we could go to the movies. I brought along my friend Sharon and forewarned her that Rachel had never been able to sit through a movie because it was too hard for her. When we bought our tickets and treats she walked into the theater very cautiously looking at the little LED lights that lined the walkway and kept saying to herself quietly “im okay, I’m okay”. She was okay! She made it the entire movie and now she is one of my favorite movie buddies!

Rachel standing up for herself. When Rachel turned 19 she wanted to get her nose pierced. I had mine done and my mom thought they were cute so she said that it was okay but Rachel had to pay for it. When we got to the Parlor she was handed a form of consent. Me, being the sister I am, I took the form and explained to the Piercer that she was Autistic, to which Rachel replied “I’m not Autistic anymore, that hurts my feelings!” This broke my heart. I knew she was smart and I never meant to hurt her feelings but I was acting like she couldn’t do anything and all she wanted was independence. I apologized, trying not to cry and said “Okay dude do you want help filling this out?” She said no until she had a question. When we got into the room they made a mark as to where they would pierce and the gentleman said “okay, I want you to take a deep breath in and when I say breathe out the hard part is over.” I grabbed her hand and said “Ready?” We both gasped for air and when he pushed the needle through she said “very painful, very painful.. oh were done!”

Rachels Big Speech… I got married to my highschool sweetheart October 4th 2015. Rachel was my Maid of Honor. One of her responsibilities was to give a toast. Rachel walked up in her sassy little black dress, introduced herself and gave a speech that had me in tears from the moment it started. at the end she said “Lets give a Toast to Kelsey and Kyle, the Bride and Groom.” My mom later told me she skipped a huge chunk of her speech, but its because she did it that made it so special to me. One of the guests who didn’t know Rachel began to cry saying that he had never had more respect for a girl for family like Rachel and her family. He said she was amazing!

She has taken leaps and bound because of my mom and my family and the world has let her take a chance. She is extraordinary and watching her grow up has been a pleasure!

 

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