Going to the pool with Autism

I am that mom at the pool,  the one who rarely takes her eyes off her kid, even though he is 11 and can swim. The one who seems extra nervous and calls her son over frequently, trying not to draw too much attention.  What you don't hear is me reminding him to respect personal space, not to be too rough, not to grab or splash if he's been asked not to do so, or to just chill out.  

I am the mom who worries about what the other kids are saying to him, and his reaction- moving around pool side depending on where he is at,  making me look like the "helicopter mom" that can't leave her kid alone. What you may not understand is that my son's "quirks" and misunderstanding of social cues can make  him a target for ridicule. Even good- natured teasing will confuse him, causing him to get upset and could cause a meltdown.

I am the mom that is on high alert, because my son gravitates towards kids much younger than he is. An older child attempting to play with these younger kids draws the attention, and possible incorrect assumptions about his motives. So I am always having to keep an eye out, reminding him frequently to not be too rough, and isn't there some kids closer to his age he would like to play with?   I understand why he prefers the younger kids sometimes, and will gladly tell you to ease any concerns you might have.

I am the mom keeping an eye on not only my son, but the other kids, whose teenage babysitters are listening to their iPods, texting, or just enjoying the sun, with a cursory glance at their young charges from time to time. What you don't know is what sometimes seems like playing or harmless rough-housing is actually an issue that needs to be addressed, and a good majority of the time, it is not my son instigating it, but not moving away from it either.

I am the mom who feels bad telling her 11 year old son that I would love to play with him in the pool, but doesn't he want to hang out with the other kids? He already deals with so much, I don't want to add to any teasing because he is hanging out with me. The kids are old enough now, that I can't play with all of them like I used to. What you don't know is while my son is  11 years old, he has a developmental delay that makes him more like 9 years old, and playing with me is fun and safe.  I still do play with him, of course and hope he won't be made fun of later.

I am the mom who won't hesitate to chastise an adult, whose child my son knows makes mean remarks to him, and to their mom, who not only laughs, but perpetuates the teasing. I do not tolerate adults who know better acting like this. Your child's behavior and the way they treat my son, and others who have differences is a direct result of your immaturity and lack of compassion. It's people like you that make my job of raising and spreading awareness that much harder.

I am the mom who is beyond thrilled  when other kids are including my son in their games, making him a part of the group and just being 11 year old boys playing "Sharks and Minnows" at the pool.  What you don't know is I am probably holding back tears, and quietly celebrating what you take for granted.

Holy crap! My daughter is shaving her head!

You know a year ago, when my Teenzilla said she was going to shave her head for St. Baldrick's, raise money for pediatric cancer research, and in memory of Donna Hornick, I indulged her. As parents we all do this, our kiddos say they are going to do something BIG, or something CRAZY and we smile and humor them, knowing that the fancies of kids, especially teenagers are fleeting.

Now we are 5 days away from the shave event, and she has not wavered once. At least not out loud, or in front of me. Her conviction is strong, her ideals are overwhelming, and her passion is that which only teenage girls have.

But, until the other night, when talking to my dearest childhood friend, I had not thought about how I felt about it. Other than knowing without a doubt that I could never do it, I have only really felt fierce pride in my girl. But now it's stuck in my head, all the feelings that I have not even thought about. My baby girl is going to be BALD.  BALD. A part of me cringes at the thought of my very pretty daughter not having hair- I mean, isn't hair one of the ways how we females define ourselves. If we have a bad hair day, it really puts a damper on the rest of our day. If we get a bad cut or color, it really upsets us. Unfortunately, we live in a society that bases everything on how we look. If we are overweight we must be a slob. If we choose not to wear makeup we must be a hippie. If we do something out of the ordinary to our hair (like when Teenzilla went shocking pink) there are stares and judgmental asshats to contend with.  And being a teenager?? In high school?  Fuggedaboutit.

I have been told "I can't believe you are LETTING her shave her head. she is going to be teased so badly"  Letting her?? No- this is HER decision. This is not some whim of a fickle teen girl- this is for an amazing cause, something bigger than she is. It takes guts and heart to do what she is going to do. It's amazing, it's life changing, and not only am I "letting" her do it, I am her loudest supporter! But there is the part of me that is scared for her, and worries about any teasing or bullshit she will have to endure. She is a strong kid, a good kid, but I don't know if she has, or if she is even able to really process what going bald means. Aside from the amazing sense of doing something awesome that is.  I don't pull any punches- I have told her repeatedly, people are going to stare. People will make comments, and not all of them will be nice. She says "Bring it on". I hope that attitude stays intact- she's gonna need it. I am very nervous about the reactions, and most of all, how my girl will handle it. It's gonna be hard. Oh- and did I mention she is also in the schools Spring production of Cinderella?  Yeah- she is going to be in the spotlight- shiny bald head and all. Well- she will wear a wig...but still!

I have caught myself reminiscing about her hair when she was little, long, curly and beautiful. She cut it off in first grade for Locks of Love, and I cried. Not in front of her, and I cried not only because she cut off all her hair, but because even at the tender age of 6, she had a big heart. And....she wanted to have a haircut like Dora the Explorer! I have always been the mom who encourages trying different things, from wardrobe to hair. Especially hair, after all, it does grow back. And I can't say I have loved every hair decision she has made, but I raised her this way- and she is her own person- and a damn good one at that. I get compliments all the time, what a great kid I have, and what a great mom I am, having raised such a great kid. And I will take credit for raising her to be the way she is, but she deserves the lion's share- she is not a little girl, she is a beautiful, funny, smart young woman who made this choice all on her own.


Today, I had a comment on my FB page- and I just have to share:

A year ago Jan, I had to shave all my hair off for a brain surgery. My hair was to my boohiney, I braided it, cut those 5 thick, long braids off & donated them as well...as the clippers inched their way over my scalp, I felt a new me emerge! At first it felt like my identity was being stripped from my grasps, I felt naked, vulnerable & honestly, a little lost! I think it was harder on my best friends than it was for me! Then a saying came to mind as tears were streaming down my face "If you don't like something...Change it...if you can't change it...Change the way you think about it!" That's what I did, changed how I thought about it! I began to think of the process of the wigs being made, the ladies that would receive them (I had THICK, long hair so def made at least 2 wigs! ), how it would effect their lives forever & suddenly I had peace! Sure people stared at me where ever I went, women (most of them!) were THE worst & the men were surprisingly wonderful! I received A LOT of compliments & support! Im not sure why Teenzilla is shaving her hair, sounds like its just for donating it & that is plain AMAZING!! I want to thank you, as her parents, for raising such an AMAZING daughter!! Thank you! As I would tell myself, its just hair & it grows back! It did in fact change me, it strips you down to your core & thankfully I had been working on myself in order to become my best self before having to be naked, vulnerable & bald in front of the world, I was taught to be comfortable with WHO I am not the identity of my long, thick hair! Bald ROCKS!! Rock it out Teenzilla!! I will be bald agn soon, another brain surgery, you what tho! I GOT THIS & BRING IT ON!! P. S. she will be really cold, a friend made me the best beanie ever & it became my favorite accessory! Go beanie shopping before or make one with one of those knitting looms (WalMart $13) and she can pick her color of yarn! Rock it out Momma & Teenzilla! YOU got this & BRING IT ON! Much Love! -Nicole Johnson

While she is not donating her hair, the money she has raised, that all goes back to St. Baldrick's and the solidarity for those who don't have the choice to go bald or not- it's mind boggling to me. 

And once again, I have to thank the indomitable Mary Tyler Mom for sharing her beautiful Donna's story with us.  The sad reality that is childhood cancer, and the lives taken much too soon has a face, a name, a story, and is not just another sad statistic for us.  It's amazing how one family's story changed our perception in such a huge way.

Please check out the links here, about St. Baldrick's, about Teenzilla  and share!

St. Baldrick's
I'm shaving my head!
Rylee's Donation Page
Michigan's Team Donna's Good Things