Thursday, March 13, 2014

1st blog post and why I'm doing this.

Our beautiful, gentle daughter just turned 17 years old a month ago. Where have the years gone? From the time she became school aged (3) and entered "the system", the chaos of IEP's, medicaid paperwork, and planning for her future, we have been thinking that this day was SO far in the distant future. Now we are facing her graduating from high school just one short year from now. "What will she do when she graduates?" The is the question that we hear from everyone that is kind enough to care. We ask ourselves the very same question. What IS the plan? Will she live at home for the rest of her life? Sure why not? I dreaded that thought when she was little and smearing poop on the walls, but now I kind of like the idea. She's WAY cleaner than her dad or her brother and she's so happy all the time that she creates an aura of joy and innocence in the home that we all need. I get nervous that once her younger brother heads off to college,  she will see that as an option and might want to head off too? She can't even cross the street on her own nor turn on a shower without scalding herself, so the idea of college puts me into a total panic. We'd ask her what her future dreams are if she had the ability to really answer, but those kinds of conversations are more frustrating than revealing. Here is a typical conversation around gifts: "Molly, what do you want for your birthday?" Silence. "What would you want for your present?" She will say on her "talker" (her augmentative device that is iPad sized and what she uses to talk) "present". ""No, but what do you want INSIDE the present, inside the box?" "Present". So that's kind of how the whole "what do you want to be when you grow up?" conversation goes. "Up". These are abstract concepts that are tough for her. We get no real answers. So she might still be living at home when I am 90 and can then wipe my poop smears off the bed :)

Basically Molly is non verbal, however in the last year 2 years since we introduced the VB-MAPP system of teaching her, she has begun to blossom. Brain connections are being made and it is fascinating to see the changes. She has about 20 spoken words and when "Mom" came out a few years ago, you know that I was thrilled. I would have cried if I hadn't have been SO surprised! So I figured that with all the new exciting changes that we continue to see in Molly, that blogging about her, uploading videos about her, and sharing the little milestones, will help our family to document the fun and maybe even provide a little hope to other families that are along the autism ride too.

I'm excited to document what is happening currently, as well as post pictures and videos from her first 17 years of life, to give perspective on how far we have come. Not really sure how this whole blogging thing goes, but let's give it a try!

23 comments:

Cody Family said...

Looking forward to following the blog ... thank you for sharing.

karen said...

I love reading your comments about Molly. I find the entire Bell family to be inspirational and I so loved having Jack as a student.

Nicole said...

I love this. I really look forward to reading all about the amazing journey you've been on and continue to travel.

AJ said...

Thank you for sharing Molly and you with me. I can't wait to follow.

Unknown said...

Dear Kathy...I love the idea of a Molly blog...you know I have a special soft spot in my heart for her, and have had the pleasure of watching her grow up to be the special young woman she is...it was always my dream that she would be Henry's date to his prom, haha...she has so much to look forward to...and I look forward to hearing more!

Kathy Bell said...

Thanks Rob! Hoping that we can get my water loving girl to Hawaii one of these days. Okay, so I really love the beach too :) We will see you then.

Unknown said...

I love to be in Molly's company because she truly does spread her joy to all those around her. Whether it is a sparkly new bracelet or a gluten free pizza, you can't help but smile at her happiness.

Kathy Bell said...

Thank you Karen!! Jack will be a big part of this blog for sure. He is AMAZING with his sister. I feel like they have been gifts to each other in so many ways. And you were a gift to him in the classroom.

Kathy Bell said...

Thanks Nicole! Gotta drum up those early speech therapy memories for me. So much of that time was a fog of chaos.

Kathy Bell said...

Dana...you are my soul autism sista and I WISH that Henry and Molly could have attended prom together too. He is a part of my heart forever. Will have a post about our relationship at some point. It's a gift to have a friend that understands even without words.

Kathy Bell said...

Ah Sarah, you can always make me laugh. She DOES like her sparkly :)

Kathy Bell said...

Thank you AJ. I guess this is where blogging is different from FB as you are my new friend that I don't actually know, huh? Glad you are along for the ride too!

Unknown said...

Love you, sista!

Unknown said...

I found her answers to those questions to be profound and complete. She has no concern over the object in the box. It is a "present". She has no concern over the circumstance of the future. It is "Up". It is the thought that counts. The future is only limited by our imagination. The more I try to explain what she is saying, the less meaning it has. It took me about 2 hours to write this. I am a grunting gorilla. She said more than I am saying here.

Caroline said...

SOOO exciting and wonderful!!!!! This gives me incredible new hope for my own daughter who has precisely the same struggles... I am so excited that you are sharing this journey with me, and so many - big hug to both of you :)

Kathy Bell said...

Thank you Caroline! Our girls are amazing aren't they?

Kathy Bell said...

John...oddly, I get what you are trying to say gorilla grunting and all. When I relax into just being with Molly...I understand her. Words often just get in the way. Sometimes I wonder if the lesson for me is to learn to speak telepathically?

Unknown said...

My heart is so so warmed reading your story, Kathy...Molly's story. I am eager to hear more about sweet Molly. :-)

Kathy Bell said...

Aww Sarah....I have some great video footage of early ABA sessions with you. You were so good with her and I know that you must be now a great mom too!

Unknown said...

I have a special soft spot in my heart for you Kathy. You have grown into an amazing woman and a more amazing Mom

Kathy Bell said...

Mrs F (I still can't bring myself to call you Jean), you just made my day! Thank you for your very kind words. They mean a lot to me.

Toni Olivieri-Barton said...

Kathy, I look forward to reading more of your journey. I remember the summer we went camping together and "awesome" was her word of choice. She is truly a special gift. Keep up the amazing writing.

Anonymous said...

Kath…I love you blog! Thank you for sharing the tales of your kiddos. You are an awesome mama!