Map Quest This

For women, the day our internal GPS activates is when we enter into a committed relationship. That is the day the chores and duties of the household are divvied up and the GPS turns on. Suddenly, your partner is asking you where stuff is; their stuff, house stuff, and all stuff is now your responsibility.

When you have kids, 90% of your day is spent finding other people's stuff. The other 10% is finding the stuff that the kids took from you.

"Mom", Twin "R" comes to me, waving her hands around, doing her princess dance," I can't... find... my...Tinkerbell doll." Me, actually knowing where something is for a change, responds, "it is in your bed. Go get it." She responds, "it's... not... there."(agitated dancing). Meanwhile, she has not moved. She is still looking at me with her sweet little face expecting me to pull it out of thin air.  "But you didn't look", I say. "I did" she says quite emphatically stomping her feet as though that would help the argument.  I look at her wondering if she had an out of body experience in which she mentally teleported upstairs and could confirm her first statement. I say,"it's in your room, if you want it, go get it." and then she says, "you get it." Oh, no, not playing that with a 3 year old. "Excuse me?" (my older kids know that question is an invitation to "time out";the first sign in the road that they don't want to go down). "Come with me, please", she says. Impressed with her ability to negotiate a compromise, I agree and much to her surprise, it was in her bed.  And that, was an easy fight.

Not all quests for lost treasure end so well. Sometimes the girls come to me, and in their sweet little voices, ask me for stuff I can't comprehend. I ask them to repeat and all I get it "I can't...find...blahblahblah." (must envision that they are waving their hands to enunciate and dancing around like a drunk butterfly).  And then, I feel like I am a contestant on Jeopardy, the music is playing the audience is watching, the opponents are hoping that I fail, and I still have no clue what the coveted item of the moment is. "I'm sorry.", I say,(the audience groans), "mommy can't understand what you want."(cause all moms speak in third person). "Can you show me?" and then  child throws self on the floor with the whine that I'm sure all my neighbors can here. (Glad it's not summer. Window are open in summer. Sound travels in Summer. Hopefully my neighbor is already drunk.) I think to myself. "Vodka is in the cabinet", I hear the little voice in my head. Must ignore. Eye on prize. And then, I start guessing random toys they own that I have in my mental inventory. If I get to the point that I actually guess which toy, they look at me like, "it's about time moron. I am speaking English here."(said in NJ accent).  If I am no where close to finding the lost ark, I then dig deep and try redirection. I offer other toys, just to be shot down and given the "I'm so offended" face. In a sea of desperation, I offer the Strawberry Shortcake movies on Netflix. This is like crack to most 3/4 year old girls and even though the theme song makes me wish the liquor store sold vodka IV drips, I still offer it.

My favorite location requests come from the child who is seeking the object they just had in their hands. Really?!? "You just had it. Where did you put it?" And magically, poof, it just became my problem. They feel that once they told me the problem, their part was done. "Excuse me?" I tell them all the time, "it is not my job to find your stuff." But, they're not buying that at all. Somehow, they know what the mommy manual says and I am mistaken.  They just have the expectation that I will magically tell them where their possessions are; like it is part of my DNA. 

I am convinced the dryer troll who eats all the single socks, has an extended family that includes the "action figure appendage eater", "doll shoe troll," "anything Dora eater", "Fairy troll", and "Video game/DVD snacker". We have had to teach the children how to properly address our action figures wounded in action. "He is amputee Captian America. Make him play nice with Decapitated Wolverine." "Dora is happier barefoot. "The fairies are busy making things beautiful." (That one failed big time) Must remember that toddlers want things NOW!!!!!!). And now that the boys have Legos, those pieces are so tiny, the vacuum is the likely cause of their disappearance. When things cannot be located when they are wanted, it is an invitation for any child to melt. Although I have organized their crap in an orderly way, nothing can compete with a whirl wind of tornadoes leaving massive chaos.

Eventually, most things pop up, sometimes right in front of you and sometimes among the dust bunnies under someone's bed. Now that the boys are older, I send them on "search parties" armed with flashlights to venture under their beds in search of the lost DS cartridges, cars, action figures and whatever else they own and maybe hadn't realized was missing yet. Those expeditions are usually quite fruitful. But yet, there are the assorted items that slip into the twilight zone. Disappeared, never to be found again. As long as it is not my stuff, I'm really ok with that. Even my GPS has it's limits.

Potty Training: Not for Wussies-repost

When any parent announces that their kid will begin potty training, what they are really saying is,"my life is going to be hell. I just signed up for boot camp and until this kid has success, my life is going to suck. It is going to challenge me in ways I never knew and I cannot fail. It is my parental obligation to get this kid to use the potty. I will not fail. I will be a winner and be among the millions, billions, who have crossed that bridge before me. If they can do it, so can I. God help me".

And with "We Are The Champions" playing in your head, you walk up to your 2/3 year old and say, "hey, I want you to meet my friend the potty." Child looks up at you and then runs away faster than Flash could even dream of, then disappears under a piece of furniture you had no idea they could fit under. And that, my friend, is the first time your child said "HELLLLLLL NO" to you.

So you go online, read blogs, take DVD's out of the library and realize that none of it works for your situation. You begin to wonder if your child was Houdini in a past life the way they can disappear when you just mention the word "potty". You beat yourself up and start to lose your mind and then the one thing the kid was trying to tell you all along becomes clear: They are not ready yet.

You put the project on hold and refrain from punching anyone in the face who is bragging about "how easy" it is to potty train their kid and anyone who asks you how boot camp is going. "F-U people, boot camp sucks. Your child is just a product of your OCD ways. I know you duct-taped that kid to the potty." You let yourself go online to research adult diapers and buy a few rolls of duct tape, just in case, of course.

Over the next few months, you approach, re-approach and dangle fancy rewards in front of them, just hoping that something, (please god, anything) works. And then, one day, they comply. They agree to sit on the potty for whatever it is you offered them, (hoping you didn't promise them a small island somewhere) and you have to shake your head because you are in shock. "Did I hear that right? kid is not under the sofa. Oh my, they are PULLING THEIR PANTS DOWN". (cue Queen). Ok, 1/2 second on the potty counts. You can have that Island off the coast of Africa, Madagascar?, sure. 

You start the child on a schedule, you set the timer for every half hour and take off their diapers hoping, just hoping, they don't challenge the stain guard on the new carpet.  You load up on teddy grahams and every time that timer goes off, after thinking "already?", you put that kid on the potty. After two days, you want to get a baseball bat and smash that timer in a million pieces. You are feeling erratic with this new schedule, but the kid is just sitting on the potty for cookies. THERE IS NO OUTPUT. ANYWHERE.  News flash: the kid is working you. They have figured out that to get the reward, all they have to do is sit on the potty. No output required. That is when you have to up the ante and require output for reward. Be it cookies, M&M's, crack, whatever.

The kid responds one of two ways, they agree or tell you "hell no". What you realize after you've upped the ante, is that now you have to do more too. To get the kid to sit there and produce output, you have to sit there and encourage output. So, you get some books, toys and electronics and sit with them. (But be careful with electronics on the potty. My #1 murdered an ipod that way and I learned from the Apple store that more electronics are dropped in the potty each year than you would think, but I digress.)

Days, weeks to follow, you watch your kid like a hawk, (if you have multiple children, a distracted hawk) hoping you can identify the "pre-I-have-to -go-potty-dance", before it turns into, "I-got-to-go-potty-dance", to "I-am-peeing-myself-dance". You clean up accidents, encourage and celebrate successes. 

With all five kids, they were remarkably different. Kids with Autism have a much more difficult time than their typical peers just because many have transition issues. Imagine doing something your entire life and then one day you have to change. This is exactly what potty training is. You are now telling them what was previously acceptable is no longer an option.

We started #1 on the potty at age three, but he didn't have pottying autonomy until age five. With #2, we started at three and by age four he had pottying autonomy but was in a diaper at night for another year and a half. #3 fought us and outright refused. We attempted multiple times with a variety of rewards and nothing worked more than a day. What we learned from him was that he was the captain of his own ship; he wasn't going to do what you wanted no matter what the reward. It was not until we threatened to put him on the potty every 10 minutes,(that was fun) and we did that for a day, he decided to do it on his own.(he was 5.) No night accidents, he just did it. Control was his issue.

The girls....a different breed entirely.

Twin "R' sashays into the room singing, "mommy, I have to go pee-peeeeeees". "Ok", I say," go do it". She replies and her song turn to whine, "no, you come with me." (What are you the queen and want to receive an audience). As she is on the potty, Twin "S' makes her announcement, "I have to go too." (Identical twins. Biology doesn't lie). We are at the point where I am just monitoring autonomous or quasi-autonomous behavior. At almost four, they are just a pull-up at night team and really good during the day. They just want to hold court when they go.

In the end, potty training boot camp varies from kid to kid. you may hear the victory song quickly or it may take years. And when all is done, you're just glad you've made it through. And now that you're not buying diapers, you have more money for beer. Cheers!

"I picked out my car"

When I woke up Saturday morning to get the boys ready for ice hockey, I saw my #2 already awake sitting in front of his computer. I went into the garage to get the hockey bags, and he came in to help. As he grabbed his bag, he said, "Mom, it will only be 6 more years until I can drive a car."
I replied, "you are 8, it is more like 8 more years." (it is 7:15 am, he is 8. Am I really having this conversation?)

"Well", he continued, as I put his equipment on, "I was online designing my car."  "What kind of car were you designing?", I asked. "A BMW", he replied, "I had a choice of two doors, four doors, and a van like yours. I picked the two door." He went on to describe the option packages he wanted. "How much is the car?", I asked . "$44,000", he answered. "I also designed two Honda's. They were $22,000." I asked him, "So what does that tell you? You can get two Honda's for the price of a BMW."  He nodded, laughed, and continued, "I also designed a Hyundai, like dad's and a jeep. But, I liked the BMW the best.""Of course you did." I say, "A BMW is a premium driving machine. But rule number one states, that you can't have a better car than your parents unless you buy one for me after you have bought one for yourself." (How early did this kid get up to be able to design five cars before 7:15am?).

Later that day, I walked into the family room and saw #2 on the computer. As soon as he saw me, he closed his computer, grabbed it and started up the stairs. "I'm gonna use the computer in my room" he said. "Oh no", I said to myself. The story my good friends told me about one of their sons watching porn on his iphone in the middle of the living room came to mind. "Computer check", I told him, and then he began to melt. I  thought,"oh no, what is he watching." The more he protested the more I worried. Finally, I told him that I wouldn't be angry but I needed to know what he is looking at. Reluctantly and shame-faced,  he told me,"I was designing another car."

"OH, THANK GOD!" I thought to myself, and I couldn't help but laugh at the sheer cuteness of that moment. He looked confused. I told him, "You're not in trouble. You just need to be honest and ask permission next time."  I  explained the meaning of "proactive", how he needs to ask permission to do things instead of being "reactive", getting into trouble because he didn't ask. I explained what personal information is and the importance of not sharing it anywhere.

My relieved child smiled, and showed the me Cube Car he designed,(car #6). As he added on all his extras, he asked us about the difference between leasing and financing. That is when dad took over and explained. "Leasing is paying to borrow the car; You have to give it back after three years. Financing is buying something when you don't have the money. So, you wind up paying more for the car by the time you pay back all the money." #2 nodded his head, and I watched another fact being absorbed by his brain.

"Ya know, 2", I said, "cars change so much over the years, who knows what kind of cars will be available when you drive." "Yea mom", he said. "And maybe by then, I will be designing my own"." He smiled the biggest, goofy smile and went back to designing. 

The Power of Siblings

Over the years, I have met many parents of children with Autism.  After they learn how many kids I have, some of them usually express a desire to have more kids, but they are apprehensive. The thought of having another child with a disability is intimidating. Many of them feel that one child with Autism is difficult enough and it would be unfair to add more to mix. 

Maybe our situation was different. When #1 was diagnosed, number 2 was already there. When number #2 was diagnosed, number 3 was on his way. When #3 was 16 months we had him evaluated and began Early Intervention services. And when #4 &#5 were on their way, we already knew what we were dealing with, and if these children had complications, we would deal with it.

When we were planning the kids, I wanted the kids to be close in age so the bond would be tighter than if I had waited several years between them. I wanted them to have a family in which they couldn't remember not having the others there.

What I know for sure, is that they all benefit from having each other in their lives. One of the biggest concerns when you have a child with Autism is their difficulty with socialization. When you have siblings, you have to learn how to interact with them. With practice, modeling and facilitation, all kids can learn to bond with their siblings. It is social group intensified. You can't  learn the interpersonal communication skills in a formal setting that teach the subtleties of  sibling interaction. Everyday the kids are learning to live with each other, talk with each other and play with each other. They are learning boundaries, triggers, and problem solving, and it benefits them all.  

I know my #1, who is the least functional of my kids, would not have the social abilities  he has today without them. He has learned to stand up for himself when #2, the Aspy, tries to boss him around. He will interact with #3 when he hears him call his name. And he will try to soothe the twins when one of them is crying. He will go up to the non-crying twin and say to her while he is pulling her towards the crying twin , "here, go make her feel better." (This is a million times better than what he used to do: grab his ears and start crying). On other occasions he will ask them "what's the matter? What can I do?" This is eons, past the kid who used to hit other kids that cried because it caused him to have a sensory meltdown. Having them in his life changed him. For the girls, having someone that could put on the DVD or the TV show they wanted was worth it's weight in gold. They asked, he delivered. He had no choice but to play attention to those little people pulling at his shirt because they wouldn't relent until he delivered. Because together, they could take him down.

Sometimes, I sit back and just listen to the kids talk to each other. I hear the girls talking about princesses and Strawberry Shortcake and I love the interaction they have with each other. At three years old, they have a great  socialization skills. The boys didn't have that ability until they were much older. When I hear #2 & #3 playing legos, or stuffed animals together, they have a dialogue, a game, or a goal. Ok, maybe the Aspy is setting the rules and controlling the game, but they are still playing together, which is something that kids with Autism usually have great difficulty with. But, because they are siblings, they are accustomed to each other and have an established dialogue.

When all five children are playing Just Dance 4, I sit, watch & listen to the conversation happening between them all while they are dancing, or trying to dance. (it usually looks like a butt crack bar mitzvah). They may not have the eye contact, but, they are talking to each other unprompted.

It is true they have moments that they fight, manipulate and antagonize each other. (My husband, an only child, never had the pleasure of typical sibling interaction). Those moments are when you jump in and model the behavior they need to resolve the situation:"I don't like it when you put my stuffed animal in the toilet." Then model the response for the perpetrator, "I'm sorry. I won't do it again. Let me put it in the dryer" Every conflict is an opportunity to teach and give them the tools, so maybe one day, they can negotiate a conflict without intervention. 

So my advice to the over thinkers: listen to your heart, know your capacity. When #3 was only 4 months old, I told my close friends that I felt that "someone's missing." Every time someone would ask me after that, "So, are you done now?", I'd say, "No, someone's missing." I knew in my heart, that someone was missing and another baby was in our future. Turns out that "someone" was a happy, chatty, pair of giggle girls that not only make me laugh, smile and appreciate the sheer beauty of their souls every day, but  are exactly what our family needed. Now, everyone is present and accounted for and better for it.

"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.