IMG_1142Loud noises bother people or startle people, but Camryn can literally lose it from loud noises. Tonight, Dave was hammering some shingles on the roof. To be honest with you, so much was going on in here with the girls playing and me making dinner that I didn’t even notice the subtle noise.

For Camryn, this noise was not subtle at all. She was obsessing over what it was and when it was going to stop. She started crying, but has come a long way with being able to communicate to me that the noise hurts her ears.

I do my best to not lose it, but part of me wanted to tell Dave to leave the darn shingles off and care about the roof at a later date, like at a time when Camryn is not home. Her inconsolable crying is SO tough at times. Another part of me is still in shock that a little noise can put her completely overboard. I want to tell her it’s no big deal, it isn’t that loud, to suck it up, but try to refrain because that is so selfish of me. It is a big deal to her. It is loud to her.

Today was Autism Awareness Day. I have been reading on social media from parents of Autistic children that they are annoyed that Autism is being celebrated. People are annoyed that we are “lighting it up blue” for one day to show unity and that this is not in fact a call for celebration. I keep reading that this is not a life that should be celebrated. I wholeheartedly disagree. This isn’t a celebration of our lives, but this is a time to celebrate coming together and creating awareness. This is also a time to celebrate parents of Autistic Children because other parents lose their crap over the dumbest things, things that aren’t even on our radar. So I will celebrate. I will celebrate how far we have come. I will celebrate that tomorrow is a new day. I will celebrate that I didn’t “lose” it today. I will celebrate that I have become so much better at just letting some of it roll. I will raise awareness with the hopes that I can help one person. And if someone else is helped because of my life, that is a celebration.

PS— Right now Dave is grinding coffee. If he wakes her up, I will lose it and celebrate nothing.

Advertisements

6 Comments

  1. Kellyann Mitchell on April 3, 2017 at 8:15 am

    Love this Kristi! Keep celebrating!!



  2. Janice Ayers on April 3, 2017 at 8:29 am

    So well said. Please keep it up.



  3. Gail on April 3, 2017 at 9:05 am

    Definitely celebrate!!! Autistic children are so special. I love how they tend to live in the moment, never judge people, and are incredibly honest. Celebrate Camryn! Celebrate your special relationship with her. Lite it up blue!!! Because I am one of those parents who is about to lose her crap over how unkind and awful some Division 1 athletes are being treated on a daily basis (my daughter is one of them). Actually, maybe you should whisper a little prayer for me. Because how people are treated is a HUGE deal. God bless Camryn, your family, and anyone who deals with autism on a daily basis.



  4. ruth m sill on April 3, 2017 at 10:02 am

    There are always going to be people that for whatever reason… want to steal your joy…as I tell Danny almost every day…we are the lucky ones…we get to choose…we can let it bother us…..or we can choose to let it go. There is so much freedom in that…it nearly always makes him smile…(referring to those who say we shouldn’t celebrate)

    As far as the noises…thanks for the reminder that some of our most routine activities can trouble those around us who may be more sensitive ….



  5. Cheryl Emerson on April 3, 2017 at 1:36 pm

    Camryn is ucky tohave you as her Mom. Stay strong, you have a beautiful daughter who has a bright future because of her loving parents.



  6. Trish Luberda on April 3, 2017 at 2:24 pm

    Kristi, I love your blog posts and I deeply respect you as a person. I don’t think you should ever stop celebrating Camryn, your life or how many obstacles you have overcome to get where you are today! However, as an old-schooled autism warrior mom myself (who gratefully has most of your day-2-day irritants to “lose it” firmly in my rear view) I can say that I don’t believe hardcore advocates are suggesting autism isn’t to be celebrated, but rather to mention and drive home the fact it’s certainly going to take a whole lot more of a committed effort than one #AAD or even a month annually in order to bring the significant changes necessary to treat those individuals with autism! Remember our children will soon be young adults and left without the necessary supports and services! In the words of my autism warrior “hero” mom, Kim Rossi Stagliano, who has/is raising 3 daughters with profound autism along with significant comorbidties, she has this to say, “Celebrating talents does little to educate the public on the intense challenges of the (autism) diagnosis and the tough aspects of living with the disability. What the autism community needs isn’t a party, but a sense of urgency and true crisis. They need advocates committed not only to getting them the acceptance they deserve, but also the critical help they require to survive, in the form of social programs, education, safety and employment opportunities.”

    Although the article is a bit dated, not much has changed, so if you or anyone else wish to read the full article you can view it here: https://www.washingtonpost.com/posteverything/wp/2015/04/02/my-three-daughters-are-autistic-i-despise-autism-awareness-month/

    God Bless you, Dave and all your girls!?



I would love to hear from you. Your comments and shares are appreciated so much!

This site uses Akismet to reduce spam. Learn how your comment data is processed.