Reader Participation day

Hey everyone, it is survey time in the house of crazy. I'm asking you, the readers to comment and tell me what your favorite blog is to date. I'd like some feedback if you're happy with the layout, the font and the content. Also, if you have topics that you'd like me to talk about, I'd love to hear it. 

I am taking a break for a week and will shift the posts to Tuesday/Thursday. If you need a fix, I invite you to go back to the archives and take a look at the potty training post, or the toy post for a giggle.  Make sure you check back on April 2nd for my World Autism day post.

It Wasn't Me

I was walking through my family room,  headed toward the kitchen and noticed a puddle on the kitchen floor. A second later, twin R runs by me sans pants. "Did you have an accident?" I asked her, she looked at me, smiled and said, "No, S did it." She is not wearing pants and didn't she just tell me 10 minutes ago that she had an accident and I told her to change? Oh no, she didn't just throw her sister under the bus. I gave her the paper towels to clean up the puddle and went upstairs to check on the accused and yes, she was dry.

They have reached the age of deniability. They have realized that they are held accountable for the things that can be proven and what they admit to. Having several siblings to point the finger at is considered an advantage; because you have so many possible suspects. My husband, an only child, has yet to experience the "I didn't do it" when everyone in the room is saying it at the same time.

I am going to miss it when their poker faces become refined. Currently, I am able to tell by the tone of their voices or their facial expressions if they are guilty. If I am able to carry that skill into their teenage years, then I will consider myself very lucky.

Stuff, Stuff and More Stuff.

There comes a time when a parent wants to purge. They get sick of seeing the pile of primary plastic that has taken over their house. They look at that pile and wonder "how can I skim this so the kids won't notice?" Because the moment the kids see the pile, it's over. They attack that pile like it was all their favorite things and you are the worst parent in the universe for trying to get rid of their things. Evil mommy.

This morning I put a nice pile of stuff outside my door so the folks at gooddonor.com could come pick it up. I love that web site because it keeps track of your donations on line so when tax time comes, you have a record of your donations. I put the bags of clothes and toys out after the boys went to school. I took one last look at the toys and make a little trip down memory lane.

My eyes went to toys like the leapfrog learning table, a quasi-annoying table, but four of the kids learned to stand with that table, so it was a fond memory. However, many other toys triggered other emotions.

I nearly giggled myself to bladder dysfunction when I realized I could get rid of the Xylophone. It got banged at the most inappropriate times, like 6am on a Saturday morning, and was used as a projectile that landed with an loud clang, which was great feedback for any kid. I once sat upstairs drinking my Bailey's and coffee while I listened to the kids play the xylophone, throw the xylophone, hear the xylophone land in a muscial clank on the floor over and over again until the coffee was gone. And then I had no choice but to reposess the nuisance and redirect.  Bon voyage freaking xylophone. I hated you.

Another toy I am happy to see leave, is a Speak and Say about dogs. It didn't have an "off" switch and it used to go off randomly. I'd be sleeping and hear, "the saint Bernard is a helper dog" and then it would woof and play music. Good bye dog toy. I hated you.

Dear Letterpillar, you were fun when we got you. We tried to make you say bad words by combining sounds and if we got the right combination, you'd giggle. Your music feature was annoying and the button that would make you sing the ABC's, would be hit or go off at random times.  That made me hate you. Good bye. Go bug someone else.

Good bye Melissa & Doug's 16 block puzzle that had animal pictures on all sides of each cube that was difficult to put togther. At one point a PhD in Chemistry and a PhD in Physics were working together to assemble the puzzle but were unsuccessful. That puzzle was an exercise in futility. Everyone hated you.

Elmo & Cookie monster noisy sound toy without an "off" switch. The kids didn't even like you that much and you used to go off at random times during the night. I hated you. Buh-bye.

Dear shape sorter, I got so tired trying to find all of your pieces once you threw up all over the house. I had to put you on a shelf and each time I found a piece, I was that much closer to donating you to someone else who maybe would hate you less that I did.

Dear box of random puzzles. You just had too many pieces for me to ever like you. Go find someone else's sofa to hide yourself under. I'm done.

The V-Tech Story Time Piano was a myriad of horrors. It lacked an "off" switch, it went off randomly and the music sounded like slow motion polka music. Every action on that toy started and ended with a "ya-hoo." I heard that so many times, I was tempted to steal a tractor just so I could run it over. Good bye awful toy, you were hated.

I was happy to get the stuff out and donated. Managing to do that without carrying the stigma of "evil mom" was a bonus. Purging rocks. I look forward to getting the next batch out.  









There are other toysin that box that I look back with some nostaliga and there are some toys that were given to us and I realize why they were given to us.

I look at the amount of things and know I could choose to try to sell them via garage sales(which I hate hosting. I feel like the vultures have come out to eat you and take your stuff), ebay, cragis list , but that would take time and effort which I don't have. SOme how, the catharticism that is achieved when things are removed from your house over-rides the possible monetary gain from trying to see things yoursef. Plus, tax write offs are nice.

Taken Down by Godzilla

 
I'm quite convinced that #3 is a manifestation of the Katy Perry song, Hot n cold. That may be the very definition of Oppositional Defiance disorder(ODD). You tell them to do something and they do the opposite. It's like you have to go back to your days as an eight year old and adopt that mentality. I'm sure we all recall games that we used to play with our siblings, like the opposite game. I find myself back to that place. I feel like I have to say, "punch your  sister in the face" to get him to decide not to. "Make a mess of your room and don't clean up" with the hope that it will work better than everything else I have tried. Clean your room or I will take all your toys and light them on fire. It works, but don't try that at home.

The truth be told, he is the hard one. Because he has so many moments of Neuro-typical-ness,  he easily blends with the masses, that is, until he flips out about something. When he gets upset, the words just evaporate and a very pissed off Godzilla takes his place. Glad he can't spit fire. When his words go, the only thing that is still working are his arms and feet, so he becomes a screaming, hitting machine. 

The challenge with having a kid with PDD/NOS, ODD and sensory issues is how to approach. There may be a thousand triggers for an outburst and only one way to guide him out. Sometimes, deep pressure hugs is all it takes, sometimes, redirection via his monkey collection, sometimes, time-out, and sometimes, nothing works and we have to let him scream it out, either in timeout or his room. He is a Rubik cube to the thousandth power: complex, hard to solve and fun to play with until you get stuck.

Transitions are especially difficult for him. Even when we go to hockey every Saturday from November to April, it is still hard to get him out the door in the morning. So I guess for those that know about his transition issues, the schedule changes made for the Maryland State Assessments (MSA) were going to impact him immensely. 

For the last week and part of this week, thanks to the "snow" day, the school schedules have been altered including days and times that his teacher was not in his class. His daily behavior log has been far from the 17 smiley faces required to earn reward as a result. Yesterday was the pinnacle, the dreaded "yellow sheet" or office referral form was sent home. 

According to the form, #3 "shoved people so hard in line that several fell. When I asked if he did it, he said 'yes' and turned to shove in the other direction. He said 'I will keep shoving and hurting people until June. Then I will be dead."  Nothing like reading that to make you feel that your parenting skills have slipped to "destined to be on Jerry Springer" material.  The form also said he knocked down two classmates and kicked his friend in the chest. Ouch. My kid is not a martial artist. The kid was sitting on the floor when Godzilla got him.

At his last IEP meeting, we requested that he have an aide. But we learned that in Baltimore county, if you didn't move here with an aide in your IEP, it is really hard to get one added. There is an entire series of evaluations that need to be made, and if Murphy's law is up and running, of course, your child behaves well, perhaps the best ever, on the day of observation. When that happens, the report comes back praising the "great behavior" of your kid regardless of the fact that as soon as the evaluator left the room, the kid took the class like Godzilla on crack. So, our request was denied. We requested again, because next year he enters first grade and the demands are higher. The children switch classes for subjects and that alone is gonna mess him up. We were still denied. 

One of our IEP arguments is that you need to make provisions in an IEP for their worst day and frankly, a report like yesterday, that lists behavior that one would equate with a future serial killer, is a clear picture of his worst day. Did the school deal with it well? Yes. The teacher is amazing and so are the administrators. I am sure that in any other school, the principal would have tried to suspend him. Could we make better provisions in his IEP to deal with Godzilla? Yes we can. Give him an aide and take some of the burden off his teacher who has to manage 22 other kids.  It is unfortunate that days like those have to happen in order to reopen a dialogue that wasn't received previously.

He stayed in his funk for the rest of the day. Godzilla ate dinner and wound up going to be early. We made him accountable for his behavior and took away all of his toys that mattered to him. I told him he needed to apologize to his class and have a good day or he would lose his play-date with his classmate, scheduled for the next day.  When he woke up this morning, I made his sock monkey, Aquis, the catalyst for reminding him that he needed to apologize to his classmates and have a good day. I even told him that Aquis would go to school with him to help him with the apologies. He seemed very happy to take Aquis with him and seemed intent on his promises of apologizing. But, we won't know if he did until I see his teacher this afternoon. 

Will Godzilla complete the task? I guess we'll have to wait until 3:20 to find out. Let's hope he can do the dance. Go Godzilla, you can rock it.

Life with twins

Every time I venture out with the twins, we are approached by the curious, engaged in conversations and are stared at.  I always get the question: "Are they twins?"  As I say "yes", the treasure chest of potential  obnoxious responses given to me by my "Zen is so over-rated" Yoga students, opens in my mind: No, they aren't. One is two years older, I just don't feed her.  No, one is a boy, but I wanted two girls so I dressed them alike. "Are they identical?", is always asked next.  As I nod, some ask  "which one is older?" S is older than R by four minutes.  "What are their names?" Inquiring minds want to know. Once all of their questions have been answered, they always say, "they are so beautiful. I love their hair." I always respond, "Thank you. It's all me."  But they are so busy fawning and fussing, I know they didn't hear me. They part saying, "you've got your hands full," And then they go on their way. You don't know the half of it, Lady. You'd fall on the floor if you knew they had three brothers.

While I was pregnant with the girls, a few yoga sessions were spend trying to figure out the worst possible name combinations because I was asked to the point of annoyance, what I planned to name the girls. Our top two names were: Jalapeño Bertha Maude & Gertrude Agatha. It was funny watching people trying to mask their reactions to the names. Hehe, what you think, nosy?

 I often get asked how I can tell them apart. When they were born, we dressed them differently. R always wore pink and S wore purple and every other non-pink color.  As they grew, they began to show their differences. In every picture, R has a big smile, and S is more subdued.  Even though they are identical, they are two different people. They wear their faces differently and have different voices. They have different interests. R loves Strawberry Shortcake and S loves Dora & My little pony. S is my daring one, while R is more timid. They like different foods. But, the biology is the same. When one goes potty, the other is right behind.

The girls are our first typical children. Their language ability and the way they play with each other makes us laugh and smile every day. #2, the apsy, was the only one of our boys that spoke in sentences at a very young age, but he was talking at us and not with us. The girls ask questions and share their observations all the time.They have eye contact and want to do art. It was a shift for us, we didn't know what it was like to have typical developing kids or girls.

What joy it must be to have a built in wing-man. In each other they have a best friend, partner in crime, and comrade. The flip side, is that in each other is a fellow antagonizer. They are a pair and they each feel naked with out the other. When one is lagging behind, the other will not move forward until she has caught up. They are a constant consideration for each other and have seldom been without the other. When one falls asleep on the couch, the other is stroking her face, giving her princess kisses to wake her up. When one is crying and the other didn't cause it, the other is trying to help. They can't have snacks without the other. You make a bowl of snacks for one and she asks for another for her "sissy". Share and share alike. That is, until they don't feel like it, and then the fighting begins. They used to be big hair pullers. I'd be doing something and hear one scream in anger and then I'd hear the sounds that usually accompany hair pulling. I'd look up and sure enough, one had a handful of beautiful golden locks dragging the other to the ground.

At four years old, the girls are starting to realize the attention they draw. Twin R is particularly aware. "Mommy, I am so beautiful. I am a pretty butterfly princess," and then she dances around flapping her pretend wings as she sings. I call it, crack butterfly. Her sister joins her after a couple minutes, but she is the more reserved one. Perhaps she knows even now, that less is more. R will engage people she sees looking at her and gives them a reason to keep looking.


I can't tell you how many times I've had to look away so they don't see my face that is trying to stifle the laughter. They crack me up because they are the perfect pair. I may not feel that way in 10 years, but for now, I'll take it, along with lots of video. I need something to hang over their heads when they get older. "I will not hesitate to put that in the senior slide show..."

Plugging In

                                                   

 
I must admit, having five kids and three with Autism, puts me into a group that few share. Even in the Autism community I am regarded as an anomaly.  Sometimes my friends ask me,"how do you do it?" the truth is, that I don't know anything else. We all deal with the cards that we are dealt. I can only imagine that everyone else has their fair share of trials and tribulations and somehow, some way, we all manage to get through it. The only thing that really differs is the need for therapy, alcohol, or drugs during or after the journey. Why, yes, I do have glaucoma.

I hear on a daily basis, "I couldn't imagine having what you have. I just have two and they're neuro-typical. I couldn't do it." Well, the truth is, you haven't had to. If you did have to, you would. You would dig down deep, get yourself under control and determine what you needed to do to get through that situation. Ask any parent with an autistic child, how they manage and most of them will say, "barely". Many of us feel that we are always one step from the abyss. If we can keep our kids from melting, chewing, fighting, regressing in school or with behaviors, then we are keeping our heads barely above water.

Any parent of a child with disabilities is in a constant state of emergency. They are in stand-by mode just waiting for something to happen. I noticed that most people with neuro-typical kids don't live that way.

When we moved to MD, we had birthday parties for #2 and #3, with September birthdays. #2 was in 1st grade and #3 was in a preschool disabled class. We invited #2's typical class for a backyard party. I watched 95% of the parents unplug from their kids. They let them run wild and there was little accountability for their behavior. I had to yell at one kid who tried to climb on my roof and his dad was standing 10 feet away ignoring him. 

#3's class party was the complete opposite from the neuro-typical parents who let their kids trash my house the week before.  All the kids had disabilities and every parent was perched watching and waiting for them to misbehave, do something inappropriate, or melt in some way. They were like me, ready to take the time to intervene and teach their child when necessary. I had to assure the parents that they could relax a bit. Birthday parties and beer, the perfect pairing.

I wondered why most of the neuro-typical parents unplugged but the parents of children with disabilities were acutely plugged in? Maybe it was a combination of overconfidence and denial of the neuro-typical parents. They felt that their kid could not possibly choose to climb on someone's roof or be rude to someone else. And of course, they made good choices. 

As parents of a child with disabilities, we know that our child is going to have a rough time fitting in society. They are always going to be judged more harshly than their typical peers, so we have to teach them how to behave. Our kids may not instinctively know what is right or wrong or how to interact with others, so we spend our time correcting and educating them, because we OWN it. We try to teach them the subtle nuances that exist in human interaction and we are extremely sensitive to "the looks", from judging people.  We OWN the condition, we OWN their disabilities and we feel that it is our job to prepare them for adulthood and how to manage life independently, because it IS our job. We don't have the luxury that many neuro-typical parents have that their kid will get to adulthood in spite of their parenting ability. The reason our kids improve is because we fight for them, we have our finger on the pulse of their education, their therapy, their social skills, their diets and their overall health. Some people call that a "helicopter parent", but we call it necessary.

Is our job as parents of children with disabilities harder than the neuro-typical parents? Well , that is subjective isn't it? Many parents of children with disabilities also have neuro-typical children in the mix as well. And, now that we have have the twins, we are also in that category. Having children with disabilities makes you more sensitive, aware and patient and that transcends to all the children. What makes it harder, is that you always have to be plugged in and aware all the time. You have to capitalize on opportunities to teach your kid to be autonomous in the friendliest environments possible, which is not always easy to find. The judging eyes are everywhere and unless they have a shirt that says, "I have Autism" most people will mistake the kid, who looks "normal", as the kid who is misbehaving and the product of bad parenting.

 Maybe having three children with different manifestations of Autism; Autism, Asperger's & PDD/NOS, which I call my Autism variety pack, is a bit more challenging than having just one on the spectrum. I have to keep track of three different sets of triggers, therapies, needs, and be ready to intervene at all times. This is why I don't like taking them all out somewhere, in fear I will lose control of a situation. There is no such thing as down-time when I am out in public with my kids. In addition to managing the Autism, I have the fun that comes with managing my wacky pair of four year old girls.

So how do I do it? It is the only thing I know. I wake up each day and hope for the best. I know things could always be worse and I could run out of vodka. That would be way worse. Plus, I don't have to babysit any of those wacky kids from those clueless neuro-typical parents. "No roof for you", said the soup nazi.

Snow Day

Ask anyone what a snow days means to them and they will use adjectives like "relaxing", "fun", "easy", and "chill." Those people don't live in my house. A snow day to me is a day of anarchy. They turn into a bunch of locusts and eat everything in sight. They battle over toys, fight about looking at each other funny and any attempt to enforce structure is met with a whining mutiny. 

If I can get them engaged in some activity, video game, movie, then I can focus on the one kid that is demanding my attention and maybe, have some peace for a few minutes. But mostly, a snow day has me in a ready stance to deal with the evolving state of emergency that is my house.

I don't know why this is, but for some reason, children wake up earlier on weekends and on snow days. I personally think it is their way to get back at us for denying them cookies or some desirable at some point in their lives. So, when we had a snow day on Wednesday, it was no surprise that the first hour of the day started so early. 

Here is a play by play of my first hour:

6:30am: I heard the boys tell the girls,"it's snowing". I heard the girls squeal with glee and then their voices faded as they went downstairs. I stayed in bed and keep dozing.

7am: I heard a fight erupt somewhere downstairs and the screaming carried so well up the stairs. I thanked the builder of my home for making the house so acoustically deficient and continued to lay there hoping it resolved independently.

7:05am: Twin "R" walked into our bedroom and said that #2 & #3 were "having issues" and told us to go help.

7:07am: Husband went downstairs and broke up the brawl.  #1 started screaming because the other two boys were screaming. (Pure example of 100% feedback.)

7:10am: #2 was sent to time out in his room, #3 was sent to timeout in the guest room and #1 threw himself on the floor screaming while trying to look under door to find #3.

7:11am: #1 was told to get up. He got up and ran to his bed while still screaming.

7:12am: We went back to bed and reflected on what had just happened.(Face-palm.)

7:13am: The twins came into our room, climbed into bed with us and told us about their adventures.

7:15am: My alarm went off.

7:16am: The boys emerged from their positions of exile and started playing nicely again.

7:17am: The twins left us to go play with the boys.

7:22am: Percussion marching band is heard throughout the house and getting louder.

7:24am: Marching band arrived.(Magically, no one was poked in the eye with a drum stick.) Glad I was not hung-over. That would have been more painful that it already was.

7:26am: Husband decided he was going to work because the snow was just "snow". Smart man. Though he was leaving me in this crazy house alone. Thanks so much. Well, it will just be me and vodka to manage the house. May the force be with us.    

The kids managed to settle down and find activities for the day. The locusts attacked the kitchen leaving little in their aftermath.  After I got the duct tape off and got myself out of the locked closet, I did manage to clean the basement and gather a bunch of toys and books to donate. So I did accomplish something in spite of being pulled in 14 directions. Relaxing? No. Chill? No. Fun? No. Do I love school days? Yes. There is a reason my kids all have perfect attendance.