"Nobody told me there'd be days like these/ Nobody told me there'd be days like these/ Nobody told me there'd be days like these/ Strange days indeed/ Most Peculiar Mama."-John Lennon.

Those lyrics ran through my head after #1's bus pulled away. It started when I asked him to bring the garbage cans up from the street before his bus came. He put on his raincoat and went out. When he came back inside, he was very agitated. He ripped off his raincoat, grabbed his down coat and started to cry. A moment later, he ripped off his down coat crying, "I'll just get wet." I said, "yes. It's cold and rainy. Let's put a sweatshirt under the raincoat and you'll be fine." I ran to his room, grabbed two sweatshirts and let him choose(to give him some control). He chose the zippy.  I helped him put it on and then put his raincoat over it. And then he blew a fuse. He ripped the coats off his body like I had put acid on him, threw himself and the floor and started screaming.( His bus was due any minute).

My internal dialogue was like this, "OMG, OMG, OMG. What the fuck...do ..I ..do here? Shit. Fuck. Motherfucker."

So, I do what any parent who is being sucked into the vortex does; I start yelling. "GET UP! YOU NEED TO PUT A COAT ON!" (bus has pulled up). I help him off the floor and he grabs his raincoat without the sweatshirt, puts it on in an agitated fashion, one step from being upside down, grabs his backpack and runs to the bus. I can here him crying up until the bus doors close. 

"Mommy, can you fix this" Says twin S, "I NEED A MINUTE", I say, much louder and with more drama than I needed to. I get the magical sticky tape and fix what is required and I think, "what the hell happened?"  He was absolutely fine, until he went outside. I then realized,  We  taught him, "when it rains, wear a raincoat. When it is cold, wear a winter coat" We didn't teach him,"when it is cold and rainy, wear a sweatshirt under a raincoat." He had melted because the coping strategies he had in place didn't define the strategy for the condition he was presented with. It was illogical. I thought of Spock looking at Captain Kirk, in that "what the fuck?" way that only a Vulcan can pull off.  Autistic individuals are creatures of habit. As parents you spend so much time prepping your children for things  hoping they learn how to cope, but you always have to err on the safe side because you never know what seeps into their heads until they show you. 

Note to self: teach all kids how to dress on cold & rainy days, because, Nobody told me there'd be days like these. Strange days indeed.

Redirection: Not an English boy band

A few months ago, my dad and step-mom visited. It had been a few years since my kids had seen them and the kids were very excited. Within the first 24 hour period, my step-mom, who has known me since I was 7, took the precious time to criticize my parenting skills, the cleanliness of my house and even called my husband "useless". The comments left me in a traumatized state that extended for months past their departure.

I was telling my friend, Stacey, about the latest part of the drama, (my dad had written a letter telling me "to get over it"), and she replied, "you need something to replace that. It is useless for you to keep replaying that in your head. Find a song you can go to when your mind starts running that useless dialogue." So, I did. And now, I start singing Biz Markie's "Just A Friend", and it works like a charm. What I didn't realize, was how often I found myself thinking of all that drama.

Stacey had redirected me.

In my house, the ability to redirect any child during any said meltdown is the one thing that makes my alcohol cabinet confident that it will still be stocked tomorrow. Redirection is key. When my #1 is upset, I start singing a song he loves and it usually helps. When #2, the Aspy, is upset we used to do outrageous math problems with him, but now we appeal to his love of geography and say wrong "facts". "Egypt is the capital of France" and that usually works. With #3, PDD/NOS, we're not really sure what pisses him off and sometimes telling him Auto-bots have red eyes works and other times we just have to wait it out. For the twins, just turning into a tickle monster or talking in one of my sesame street voices helps. "Elmo says, cut that shit out." Just kidding.

When a school year begins, I write letters to the teachers and aides telling them what the boys interests are and tell them the best way to redirect them if needed. In fact, when prepping anyone to deal with my kids, the FIRST thing I tell them is how to redirect them and then I tell them possible triggers. 

The ability to redirect someone is an art. It is an ability to connect with someone's psyche, interrupt their internal dialogue, and press the "reset button." When one of my children is "reset" their face changes from all scrunched up to relaxed, their pulse decreases and the demon who had possessed my child has returned to the depths of hell. When I see that happen, I feel like someone placed a gold medal around my neck. "That's right baby. I am the champion" (cue, Queen)

I learned from Stacey that even though I am pretty much a pro at redirecting my kids most of the time,(well, 4 out of 5 ain't bad) I needed just as much help  redirecting as my kids do. We all benefit from having someone that can push us to the bright side. Stacey, this gold is for you.

2012-The year I shifted my Paradigm on my verbally limited #1

In April 2012, our ASA chapter sponsored Honestly Autism Day at Towson University. The key speaker for the event was William Stillman, author, speaker and  adult with Aperger's. A part of his talk was about the psyche of a person who is non-verbal. He asked the question to the audience, "has anyone ever lost their voice?" of course, everyone's hand went  up. He then asked the same question, but added, "for a week?", less hands, "A month?", two hands, "A year?", one hand. He went up to the woman and asked, "how did that feel?" And then, through a stream of tears, she explained all the frustration, anxiety and depression she endured during that time. Stillman, explained that society places the stigma of "less-intelligent" on individuals that are unable to communicate with us in the speedy manner we have been accustomed to and "we may lose patience, become bored or distracted, or dismiss their communication attempts altogether"(Stillman). He stressed the importance of addressing individuals with limited verbal function with an implied intellect and to allow them the extra time they may need to respond.

At that moment, I thought of two of my boys, who were both nonverbal until they entered the Early Intervention system at age two and a half, and then had limited language capabilities for years after. Even now, my 10 year old only uses language when he is being asked to use it or needs something. He doesn't see language as something that is fun, just a tool to get what he wants. And then I realized, I had let his language limitations dictate what I perceived his intelligence to be. It justified my perceptions of his disability.  I also realized that I spent most of my day managing him instead of having bonding moments and trying to learn more about him.

So, I began a quest to know my verbally limited  10 year old. I started joking with him, playing music to learn his favorite songs, playing video games with him and working on school work to realize where his struggles were. I treated him like a 10 year old. He had chores and was made as accountable as his overly verbal 8 year brother with Asperger's. When he would resist, we would reply, "you are 10. All your classmates can do this and you can too." Raising the bar and holding him accountable in spite of his diagnosis was the best gift we could have given him. 

At his IEP meeting with the school, I encouraged them to increase his autonomy and accountability. I had heard from a friend that his aide does way more for him than we would like and of course he doesn't mind. He's not stupid. Why should he do it if someone else is willing? The team looked at me a little cross, but then I said, "look, he's 10. We only have 8 more years to get it right. We have to use this time to prep him for the next level." Their faces changed and at that moment, they got IT. His schooling is not about today or tomorrow, it is the cumulative effect of the experience. 

And with that, our quest to teach him all the things he will need to know about life so he can function as a productive member of society continues. As does my quest to teach people how to deal with my son. I am glad that I was able to shift my paradigm so I could learn more about this wonderful boy that I spend so much of my time advocating for.

Today our ASA(Autism Society of America) chapter hosted an event at Build-a-Bear. Each child was given a voucher worth $25 to spend. I took the boys aside and explained the  rules: 1) stay together, 2) $25 is all you get. You can get an outfit and an animal or any combination, but it can't exceed $25. And then, all three took off in different directions. At that moment, I was glad for 4 things: 1) I knew most of the parents in the store from the ASA meetings, 2) most of the staff knew us from prior visits, 3) the store wasn't that big, and 4) my kids are not runners, so I knew I was 30 seconds away from locating any one of them, if not more.

The results:

Child #1, Autism, age 10, walks around the store once and sits on floor near the door. I tell him to get up and he walks around the store at least 10 times then spends time at the sound table. The bear counselor helps him find the one bear that lights up and he declares "this is the best bear in the store." Under budget and happy.

Child #2, Asperger's, age 8, takes a careful assessment of the inventory and makes his choices so he gets four things and spends every dollar.

Child #3, PDD/NOS, age 6, grabs the monkey, cause he loves monkeys, and asks me how much he has left. He then grabbed a little light-saber and was content. Under budget and happy.

A great day, a great outing.