On empathy and othersuch things society says our kids don't have

I know that I promised a humorous post on JJ's many things he does and has done in the past, however, something more deep has entered our house.  Society says our children lack empathy. Lately, the media has stated that having Asperger's means a predisposition for violence. There is so much negative, and frankly, just plain wrong information out there that it astounds me. Tonight was a night for proof of that.

Now, you all know that SS is ASD. However, she is also an 8 year old girl with feelings, insecurities, and the innate female knowledge of using tears as manipulation. With her ASD, comes major compulsion issues. We are currently trying to work on them, but it is hard and slow going. As many parents of ASD kids can probably attest, quite often, it feels as if our children really don't care if we are there are not. Sometimes, that compulsion is so strong, it overrides their outward show of respect and love.

Tonight, SS and I were having a conversation about her stealing things in the middle of the night. Mind you, as her parent, I should have realized how distracted she was, but I didn't. In the middle of this talk, she tried to take something that she knows she isn't supposed to have, right in front of my face. I am not the perfect mom. I get mad. I got mad. I told her that we were having this conversation and she did this right under my nose. Then, I told her to go to her room. As soon as she left the room, I began to cry. I felt unseen, unwanted, and unloved by my own child. As Puck was leaving the house, I was verbalizing my pain to her in a conversational tone, completely forgetting that JJ has super hearing.

JJ and SS have a unique way of talking things out. They understand each other in ways that I cannot begin to comprehend. Here I am, crying my eyes out alone, as Puck has gone to work, and I hear JJ in SS's room.

" How could you do that to mom? She was talking to you about not stealing and you tried to steal. Do you know how that makes her feel? She feels like you don't love her. Do you know how lucky you are to have a mom, a dad, and a stepmom that love you? There are kids that don't have that. Look at all these clothes and toys in your room. Where do you think those come from? Mom, that's where. She buys you all these things. She works really hard so you have them. Look at that huge castle poster on your wall. Who painted that for three days for you, by hand? Mom did. Here you are sitting here shoving strawberry fruit snacks in your mouth crying and worrying about nothing but your stupid sea monkeys. You are hurting everyone. Me, mom, Puck, the cats, everyone. You are killing mom."-JJ

"I'm not killing her." -SS

"When you do those things, you kill pieces of her heart and soul. She does everything for you. You think staying home and going to school with her is easy? She makes me do so much work. You need to go out and apologize to her and mean it. Use your emotional face. Don't just say it with a blank face."-JJ

At this point, there is a good deal of mumbling and I have no idea what is going on. But, after about ten minutes, they both emerge from hiding. JJ tells me that SS has something to say to me, but that I should listen because she has a secret to tell me too. He turns to her and says," Ok, now tell her what you need to tell her. Tell her how you feel and tell her with the face that means the same thing."

"Mom, I am sorry that I hurt your feelings. I am sorry that I stole in the middle of the night. I do love you, but I do have a secret. Sometimes, I think the same way you do. I think you don't love me. I think you sometimes love JJ more."-SS

"Why do you think that, SS?"-me

"Because I am always in trouble and he is always home with you, but I have to go to school."-SS

"So you think because you get in trouble for doing naughty things, that we don't love you. Honey, it's BECAUSE we love you that you get in trouble. What kind of parents would we be if we let you just get away with everything? We have to give you consequences for naughty things. Do you understand that?"-me

"Yes."-SS

"Ok, well I am sorry that you thought we didn't love you. I will try harder to make sure you know that we do. After Thursday, I will be home all the time and I will make sure I take special time to make sure you always know. Ok?"-me

"Ok. I am sorry that I hurt you. I will try harder to behave and not steal. I will also try to listen to you more often."-SS

Out of the back of the room comes, "And I will try harder to be more like I have been today. Helpful, nice, and understanding."-JJ

The moral of this whole thing is that JJ, who is supposed to lack the ability to empathize, took it upon himself, knowing full well that SS understood him better than us, to go explain to her what she did. He understood it. He used his autistic knowledge of himself and his sister to fix a situation that I would have been lost in. He used the tools we taught him to teach her what was right. To further it, SS came forward and discussed her emotions and fears rationally and with little difficulty. To round it out, all three of us came to a place of understanding. There was no violence or threats in JJ when he talked to his sister other than an accidental swipe across the throat with his super long nail in a sweeping hand gesture. (This explanation from his sister, so not an excuse.) There was no malice. What there was, was an incredible amount of empathy and understanding in a child that society says should completely lack it. It was amazing.

I am still upset that my daughter would think I didn't love her, but also can sort of see her point. For six months, I have been home most weekdays while she was in school, and at work on the weekends when she was off. That is my fault. It took me too long to see what needed to be done and to do it. I did get there though, and that is what counts. So from here on out, I will be the parent I want to be for them. I will be there more often and never let either children feel that again. I have learned my lesson, and the children, at the very least, have acknowledged a problem. I don't expect them to be perfect and I don't expect them to be able to curb all of the impulses that come their way, but they acknowledged them.

Tonight, my children taught me a valuable lesson that I will never forget.

SS the Choarder

A newly found friend of mine gave me a great idea for a blog. We were discussing our children's mutual tendency to be hoarders, or choarders (child hoarders), as they are called on The Street. As the conversation went on, I started to think of some of the things I have found in, on, or under SS's bed and I thought, what a great idea. For those of you that are new to me, let me tell you that SS is 8 years old and has ASD. Now, choarders come in all shapes, sizes, and neurotypes, but ASD kids have such a unique way of thinking that it leaves you with a serious WTH mind set when you find something. Instead of giving you every detail of the discovery stories, I will proceed to list them, for your enjoyment.

unopened peanut butter jars
opened peanut butter jars
unopened bread
opened bread
crackers
lotion
perfume
napkins
cough drops all out of their wrappers, but none eaten
a dirty knife with day old cake crumbs
a cup of milk
her brother's Pokemon cards
her brother's Skylander figurines
girl scout cookies (can't say I blame her for those)
masking tape
duct tape
wrapping paper tape
wrapping paper
unused plates
clean plates
milk in the jug
a pan of brownies
post it notes
peanut butter spoons
assorted cutlery
entire boxes of cereal
entire boxes of pudding cups and fruit
feathers
rocks

Well, you get the picture. We try to clean her room out once a week and have her do it the other days, but it's never the same and always a surprise. She has recently realized, after 2 years, that we will find things in her room, so now we are finding them in the dirty laundry, under the bathroom sink, and other such weird places. I mean, who finds the remote they thought they lost days ago in the bottom of a cereal box, or their license in the broiler. The places we find things is astounding. The ONE place she has never tried to hide things is the book shelves. She may be a ninja choarder, but she is a smart one!

There are jobs, then there are JOBS!

So, one more day until I find myself in a new but old occupation. I am so excited, and at the same time so scared. I know the children don't react well to change. There will be consequences to this action, even if it is a good one. Plans are being made, schedules written. It will be a whole new world around here. JJ is going to finally get the full structure and scheduling he needs, if I have to drag him kicking and screaming into it. The rules around here are going to change. I can see where plenty of you have probably already got a set schedule for your children, but mine haven't had one in a long time, due to the inconsistent work schedule I have endured for years. I plan on getting JJ up EARLIER every other morning to go running with me. He has so much energy and hopefully it will mellow out his days. He will be running Monday, Wednesday, and Friday. I have his school work down to hours. He has so much time to finish it, then we move on. I included breaks or snacks, lunch, and reading time. Monday through Friday he will follow the schedule set for that particular day.

Along with the school scheduling that is long overdue, both children will have their afternoons scheduled to a T as well. From homework to bedtime, they will follow strict guidelines. I am working on visuals for SS due to her short term memory issues and a checklist for ever-logical JJ. I will be adding chores, free time, clean time, and various other activities, including some sort of social time, where they can learn to be polite. I know, typically children have already learned this, but mine are too honest sometimes. I am not saying honesty is a bad thing, but there are better ways to say certain things, and they will learn to do it together.

I plan on including some audio exercises for SS. I was thinking along the lines of keeping a bass line beat during a song. If I could teach her to separate the sounds out, maybe she would have an easier time in crowds and at school. Since the children are so musically oriented, I figure this could work. We get no help from anyone, even though we were told that when she turned 8, she would get it. We have yet to see anyone standing up, and when we search, they run and hide.

There is so much more that goes into being home with two autistic kids than there ever was in my "day job." There is more potential for disaster, but also, there is a multitude of possibilities for happiness and growth. I took this "job" knowing that the one I was walking into was much harder than the one I am leaving. I hold no regrets. Reservations I have in spades, but those will fade as time passes. It is time I am the parent my children need, not the parent the world thinks I should be. I aspire to really keep up the house, and the scheduling, and the routines. Remember when I said I wanted to white picket fence? Once upon a time, I was a stay at home, clueless mom. Well, I am ready to be that again, but this time, I know what I am doing for the most part, and I know how to wing it like a champion.

Yes, it will be long, but let's get it out there.

Sitting here thinking about where to start. Most people would say the beginning, but honestly, my beginning wasn't all that different than most peoples. Let me start with this: I am a mother of not one, but two kids who happen to have autism. I guess I won the genetic lottery. They are quirky, fun, interesting, and talented. They are also challenging, rigid, and stubborn. You won't hear me mention bio-dad much because to be mentioned, you actually have to be there. I used to tell people he tried. Truth is, I think if it is convenient, then he will try. If he wants it his way, he will try. When it comes to day to day living and knowing your children, it's just not there. My children didn't have magic autism dust dropped on them at birth. It came from somewhere. From the inability to even begin to TRY to understand his children and all the research I had to do because of them, I have a good idea how this all came to be.

I remember the first moment I ever considered having children. I was sitting in my friends bedroom. Prom was right around the corner and dresses were being tested. Mirrors were being used. It was all very girly and unlike who I am. Amongst the flurry of being normal teenagers, my friend turned sideways in the mirror and said, "Come here." With the look of utter confusion, I got up and cautiously approached the evil of the mirror. Before I had a chance to react, she grabbed two pillows, stuffed them under our shirts and stated bluntly, that we would be cute pregnant. (Interesting side note here: she had a baby not a year later, but I digress.) I stood in that mirror and for the first time, I thought about it. I mean, really thought about it. Yes, I was 17. No, I did not intend to run off and make a baseball team and try to live on rainbows and butterflies. But, I thought about it. Did I want the whole white picket fence, perfect husband, and two and a half kids? I did, which is ironic. Some day, I may tell you about THAT particular irony.

Three years later, I found myself as round as I had been that day in the mirror, without the pillow. I was newly married and expecting a child. Oh, the things I thought about. Never in my life could I have ever imagined how it was REALLY going to be. All the books and television shows portray an idea of perfection. They give us the facts based on how it should be in typical society. I was young. I didn't know better. At the time, I would have sold a toe to stumble across the books I have now. When my son was born, I was elated. As he grew, I thought everything was perfect. I thought painting with his diaper was normal. I assumed he was just quiet and pensive. When he did start speaking, I did not even consider how late in the game it really was, nor did it occur to me that words like trapezoid and aquamarine were not normal words for a two year old. I suspected, but I was living in a dream. I did nothing. Not because I didn't think anything of it, but because bio was so adamant against any testing.

Then, along comes my daughter. When she would scream in crowds, I thought that was typical. When she had to sleep in dead silence with a blanket over her head so no light would creep in, I didn't think about it. And again, painting with the damned diaper. Everyone kept saying that it was a sign of intelligence or early artistic ability. Everyone can shut it! They weren't spending hours a day cleaning crap off the walls and floors. They weren't bathing their child three and four times a day. They had no idea what I was going through.

As both children grew, they spoke to each other, but not really to anyone else. I would find my son in my daughter's crib talking to her and she would talk back. It was a lot like twin speak. I didn't understand a word, but they were coming to know each other, which was huge because it always seemed to me that my son didn't have many friends. They still do it.

Not long after my daughter came along, I left with both children. I met my soul mate and started life again. I started with new ideas and new approaches. I had my son tested. I did not go through the grieving that so many do because I knew something was up. Yes, he had Asperger's. Great. Now, will someone PLEASE tell me how to help him. No answer. None. Everything my son has accomplished to his now scary 12 years of age, has been learned the hard way. We all learned the hard way. We read the books. I cannot name a thing we did not try. When none of it worked, we gave the book to a few less understanding family members and threw out all the rules. WE built this street. Not a therapist, or classes, or a counselor. We had to do it all on our own.

When my daughter turned three, she was mandated for early intervention screening for school. When her results came back, I cried for days. I never imagined there was anything going on. I mean, how was I to know she was speech delayed? Her brother didn't talk until he was four. I was told that she had SPD and a mild form of autism. I was told she had no dominant hand, therefore, no balance or ability to catch herself when she falls. She had weak fine motor skills. It was akin to being smacked in the face with a big fat "YOU ARE BLIND" sign. Hindsight. It's all about hindsight. Then the seizures started. Of course, as is par for the course in our family, they were petite mal, which meant if you weren't watching, you didn't see a thing. It was FOUR years before anyone other than me or Puck ever saw her have one. We lived that long with people thinking we were lying or seeing false things. Judgement about medication. The schools noted she was not doing well, but did not meet "the gap" for an IEP. That is a long time to hold your ground against the world, including those you love, but we did.

We have worked hard to get to where we are. I have worked hard to be a better person and mother for my children. We tried seeking help, and until recently, nobody answered. I finally understood how my kids could get so frustrated because even when they were speaking, nobody was listening.

We have made major changes on Autism Street in the last year. They have been amazing changes. When we stopped listening to the world, and started listening to ourselves, it made a world of difference. No, we aren't conventional, even from an autistic parent's point of view. So what! Our children have made greater strides this year than ever before.

Recently, my son asked me how I always know what he is feeling and thinking. I told him that it's because he doesn't communicate like everyone else. I had to learn, from the time he could walk, a whole new way to listen. I had to learn new sets of body language and facial expressions. I told him that even though it is hard for him to understand universal body language and expressions, that I am bilingual. I speak society AND autism. I don't always have the answers, but I was never afraid of a little research. It is a very good thing that I am such an  awesome multitasker, because I would be in so much trouble if I wasn't. If you have an ASD kid, you know what I mean. Try having a four way conversation with another adult and two children with different "forms" of autism. It requires you to maintain three different ways of thinking.

Our life is exhausting. We don't sleep much. I forget to eat quite often. As an example of how chaotic life can be around here, it took me a year and a half to learn my address. We laugh, cry, scream, pull hair, flap hands, bounce off walls, feel crazy and sane at the same time every day. This IS our life. If you don't have kids on the spectrum, you may not understand this, but our life is AMAZING! Yes, it is hard. I think that the difficulty is what makes us better at it, day by day. I see families out there, with their white picket fences, "wonderful husbands", and two and a half kids and remember I wanted that. After years of struggle and tears, I wouldn't trade my life for anyone else's. Our family is more functional and bonded than most of those we see around us. Our way of life doesn't leave enough time for huge arguments that you can hear through the walls. Our way of life requires us to be more sensitive to what isn't being said. It requires us to communicate on all levels, at all times. It makes us a better family. My children don't "suffer" from autism. My children were blessed with it.

To sum it up, society can bite me. Convention can get the hell out of our way. We do it different. We do what works. But, above all, despite the crap we swim through day to day, we are happy. When we tell a story, it may sound negative to the world, but it's not. It is a normal in our life. And what a life it is!