Monday, September 14, 2015

The "typical" sibling. Autism speak for the "normal" kid

I'm positive that Heaven exists and every sibling of a special needs child will be heading that way when their sun sets. They deserve it! My 16 year old son Jack hates to have me talk about him, post about him, and rarely allows a picture to be taken. But today, who cares what he thinks? This is my day to brag about the amazing man that he is becoming. And I would venture to say that he is the impressive soul that he is in large part by having grown up with Molly as his big sister.



In his social studies class last year, they had to research a topic and deliver a 20 minute presentation to the class. Jack chose to share the topic of autism. He looked up all the facts and figures and stats about the rise in the diagnosis. He shared the signs and symptoms. And he told Molly stories. I'm not sure how many peers in his class knew that he had a sibling with autism prior to that day as he had just started in the new school district the year before. Everyone in our tiny town of Manitou knew and had grown up with Molly too but when Jack choiced into Cheyenne Mountain School District, many/most kids did not know him nor what his home life looked like. After his presentation, I went on line to the parent portal to his grade as I was DYING to know how the presentation went as all he had told me was "fine". Ugh...communication with mom is not Jack's favorite thing. So I did what all desperate mothers would do...I emailed the teacher and asked. "Mrs. _ , I see that Jack Bell did very well on his presentation as he got a 98. As you know, you have never heard from me all year as we let him navigate the highs and lows of grades without us dealing directly with you. That is HIS job. But today, I am dying to know WHAT he shared about his sister. Is he traumatized for life? Did he even talk about her or was it just the facts and figures of autism?" About 1/2 hour later my phone rang and it was the teacher. She said "Kathy, I have SO much to say that it's just easier calling you than sending an email". I loved her already. "I have been doing this for over 20 years and Jack's presentation will go down as one of THE MOST memorable of all time. You could have heard a pin drop in the classroom as the students were so enthralled by his story".

He shared how Molly has OCD over taking out the trash, putting the recycle objects in the bin, clicking the light on the refrigerator from "ice" to "water" and then heads to the basement first thing in the morning to clean Jack's bathroom while he is sleeping. She takes his towel and meticulously wipes the toilet seat, the shower, the sink until everything is dry and sparkly. Then she hangs the towel neatly up.  Jack gets up 1/2 hour later, groggily walks to the bathroom, showers and dries off.....with the towel!! He had NO idea how long Molly's little system had been going on before he discovered her! And telling her to stop just doesn't work. So he came up with a smart plan: before bed he hangs his towel all wonky so that if it's straight and neat in the morning, he knows that Molly has been there and he retrieves a clean towel. Needless to say, he goes through A LOT of towels.

The kids in his class loved that story. And so do I.

Jack has developed a patience, understanding and sense of humor that many boys his age do not have. He thinks outside the box for solutions. He sets boundaries with Molly but allows for flexibility as he knows that getting mad and angry with her is the LAST thing that will help. She will melt into a puddle if we raise our voice in disappointment at her and she will cry and rant and will repeat "No" over.. and... over and over....and over... and over until you feel crazy and want to shout "Stop saying NO!" but that wouldn't help either.


Jack has learned to notice OCD patterns and help nip them. He notices when we his parents cave on issues with Molly and let her get away with stuff...like taking a basically empty bag of trash to the garage bin that only has 2 items in it. Sometimes I'm just too tired to deal with the tantrum that will ensue...so I let her do it. Jack will chase her down and make her put it back and leave it. He is good!! I am SO done with parenting this way after 18 years :)


The miracle to me is that he has NEVER been embarrassed by her. He loves her and accepts her and would go out of his way to connect with her in the halls of elementary and middle school. He even told his high school classmates when asked if he was angry or bitter about it that he wasn't!! He said that he loves her just the way she is. Wow. Powerful. Mature. For the record, I'm a little angry and bitter.


You hear about the typical sibling feeling slighted that so much attention was given to the special needs kid because of their: outbursts, therapies, they don't understand right from wrong so the typical sibling gets the brunt of responsibilities since they do understand, chores and "just let johnny have their way", families can't go out to eat or on vacations since the autistic kid makes that travel impossible and embarrassing, there is no money left as the family is spending so much out of pocket for therapies to heal their child that the typical kid can't do things that they would like to do. The list goes on and on.


So we have always had Jack's good fortune in mind too. And in many ways he had MORE of our attention since Molly was in therapy for so many of his early years so he had lots of 1:1 time with me that a second child rarely gets. The therapists would also sometimes incorporate him into the sessions with Molly which he loved as he got the food reinforcers too for picking the right color, for running into the other room and back, for responding to his name...all very easy things for him that he got a little chip (or cookie, or m&m for). He didn't have to share sports seasons with his sister as we all came to ALL of his games. He got to choose whatever he wanted to watch on TV as she just loved being beside him and didn't care what they watched. He picks the restaurants where we go. He chooses which friends and families to include camping and skiing with. Gosh, he has WAY too much influence :)


But he doesn't have a pal to play endless games of cards with on road trips (like I did). He doesn't have someone to share stories and secrets with (though she doesn't tell a soul if he tells her anything so maybe that IS good). He doesn't get to vent to her about us and have her say "I KNOW...they are so nosy. Mom wants to know who I want to go to the Homecoming Dance with! Can you believe it?" He will be her guardian some day and will have that responsibility to manage her care when we are gone.


Jack is intuitive, he is caring, he is sensitive to Molly and notices how those are reacting around her, he is protective, he is funny and teases her, he is her biggest fan, he notices her achievements, he can imitate her sounds, he loves her, and though they have never had a conversation, they know each other perfectly!


I hope one day (soon) he will do a documentary film about the life of a sibling. He has such a beautiful, healthy perspective that I think others would enjoy seeing through his eyes. He knows a few other siblings that would have interesting perspectives too. Could you please encourage him to make his inspiring film this year?

Why?

Because he won't listen to me.


6 comments:

Unknown said...

Oh Kathy............you MUST know that Jack is the way he is because of the awesome parents he has, right? He came into this world, and maybe he came into wise, but you all nurtured it, and showed him how to be the person he is today. Thank you for always being honest, it is refreshing!

Kathy Bell said...

you are right...we'll take a little credit for his awesomeness! but i do think that he has a special soul that was geared towards being the perfect brother to her and great son to us. thanks for always being my biggest writing fan leigh!!

Jeff Schreibefr said...

Really love this blog. It's obvious that Jack has been raised right and that the empathy and emotional intelligence he has developed at this age will serve him well throughout his life.

Unknown said...

Ok seriously I am crying. This is so amazing to read and just touches my heart. jack, do a film! You can do this. You have so much to teach and millions of people to be your students. Kathy, beautifully written! And one of these days we will see each other again and I will see your precious children that I met when they both couldn't walk or talk.

Unknown said...

Remember me? I need a warning for posts like this. I was teary just from the thought of Jack choosing this topic. He is a beautiful brother, son and human being. Beautifully written, Kathy. I hope you print this and save it for him. If he ever forgets how amazing he is, he should read this post.

Kathy Bell said...

Thank you Jeff!! Have so enjoyed reconnecting with you through FB. You make me laugh and I always love to laugh. Sarah, I can always count on you to get teary you big softy :) I love your idea of printing it up for him. Wonder if it will get back to him at school today that I had posted this? And Unknown...who are you? I love that out of everyone you did what I asked and encouraged Jack Bell to do a film!! :) Thanks friends for all of the encouragement!