Tuesday, July 30, 2013

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.

Tuesday, July 23, 2013

Best.Birthday Ever!!

A few weeks ago, I had made mention on my Facebook page Red Vines & Red Wine that The Boy was upset about not having more friends to invite to his birthday party. He asked me "I'm a nice guy, aren't I?" Shattered my heart into a billion pieces. How do you tell an almost 11 year old with autism, that of course he's a nice guy, and it's the quality of the friends, not the quantity?  Of course, I did tell him these things, and he seemed content with the answers, but I was still upset about it.

In the comments of this post, someone suggested that I do a "Card Party" for him. What a FANTASTIC idea! So, with some nervousness, I opened up our lives to the folks who like my blog,  page, and have followed our lives.

So many awesome cards!
We were not disappointed! The birthday cards started coming in about a week or so after I posted the request. The Boy didn't seem to really understand why he was getting mail from strangers, and I had to patiently explain to him (several times!) that all of these people read my blog, and know about you through that and my page. And that some of them have kids with autism like you, and some just want to wish you a happy birthday.  Once he understood he got quite excited!  He loves to get mail anyway, so the daily trip to the mailbox became an adventure!

He got musical cards, homemade cards, cards with stickers, cards with cash, cards with dinosaurs, cards with superheroes, post cards, cards made from duct tape - so many cool cards! He got a cool swag bag from Canada, filled with all kinds of Canadian fun, including a lot of little notes with Canada fun facts, he got a box of sweet treats from England, and a post card from Germany!

All told, he received 35 cards, gifts and well wishes from all over the U.S. and beyond. We kept track of the states he got things from on a map I printed out for him. It was not only fun, it was a great learning experience as well.

The Boy got cards from:



South Carolina

North Carolina









West Virginia












The cards overflowed into two rooms!

How awesome is that?? He also got two pen pal requests, and we can't wait to respond!  I was so completely overwhelmed with the kindness and generosity of so many people who, until now have only known my son as "The Boy."  With so much ugly in the world, this truly gave my hope in humanity a much needed boost.  I cannot thank everyone enough for participating and making The Boy's 11th birthday truly something special.    You are all amazing and wonderful, and I am thankful to have such positive people in our lives!

Sunday, July 7, 2013

Family Adventures and how Autism ruins them

You know, most of the time I try and be positive, even upbeat about living the autism life. But sometimes even my incessant cheeriness is dulled by how our lives are dictated by crap that autism throws at us.  And those days are the days I say AUTISM SUCKS and I don't care who doesn't like it.

I did not say "The Boy sucks" and I never ever would. But this weekend the fact that autism and the anxiety it creates abruptly cut an  impromptu family adventure very short frustrates me.

The Mister surprised us on Saturday and said- get to the car- we are going on an adventure! This is unusual for him to begin with, so we all did as he said. Everyone piled in the car laughing, excited to get out of the house.
Look how happy we all are!

An hour car ride filled with singing, laughter and playing the alphabet game, everything was fine and dandy. We decided to stop at Cabela's- just for the hell of it. Things continued on, light, fun, and silly with The Boy amazed at all the displays- and then all of a sudden I saw the signs-  the anxious look in The Boy's eyes, the jerky body movements, the heavy breathing- here comes the meltdown.  Time to go, and go get something to eat I tell The Mister.  Teenzilla rolled her eyes and mumbled something under her breath which I chose to ignore.

Blown away at Cabela's
We got back to the car and talked about what else we were going to do. The Boy asked if we were going to go home now. I said- well- we were kind of planning on some more adventuring after getting some lunch. The panic really set in at that point and he cried- "I JUST WANT TO GO HOME!"  Ok, ok- let's get some food.

Over lunch we talked about taking a trip to Ikea, or just aimlessly driving somewhere and stopping when we saw something cool. As I watched The Boy barely touch his chicken nuggets, I knew our adventure was done for the day.

Teenzilla was pissed. Pissed at her brother, pissed at me, and refusing to be consoled. That finally made me snap at her, and tell her I have to miss out on things all the time, she just needs to get over it. Of course, I immediately regretted this- as tears welled up in her eyes, and she yelled back "I AM ALWAYS DISAPPOINTED! HE always ruins everything!"  *sigh* Yet another family outing derailed by Autism. Teenzilla taking a back seat again to her brothers sensory needs and anxiety issues. I know it sucks. I hate it too.

As soon as we got home, I told her we were getting pizza and she should ask her BFF to come over to hang out.   She shrugged and went to her room. The Boy visibly relaxed as soon as we pulled in the driveway. The panicked look in his eyes, the tension in his whole body, it all went away. I knew we made the right decision- even if it was at the expense of the rest of the family having fun. I was frustrated and a little irritated too. Well- a lot irritated. I have to keep telling myself  "It's NOT his fault, it's NOT his fault." This wasn't a case of a child being a brat- this was sensory issues and autistic behaviors in overdrive. And despite his (and our) efforts, today just wasn't a day he could overcome them

Siblings get screwed sometimes when dealing with an autistic brother or sister.  Either they feel an overwhelming sense of responsibility, or they feel resentful, jealous and anger. I follow all the advice. I make time just for her. We do lunch and shopping dates, I let her friends all hang out here, we do movie nights- anything to make it all about HER, since so much of our world does revolve around The Boy. From what we watch on TV, what we eat for dinner, and where we get to go-  it can be difficult to balance.  And The Boy is high functioning, I can't imagine how much more tricky it becomes when you have a child that has moderate to severe autism that requires 150% of your time and attention, PLUS any other children that need that attention too. I feel bad even complaining.   But sometimes you just have to let it out, right? Tomorrow is another day.  Just keep swimming.

My loves ♥