Golden Nuggets

With Autism, there are so many challenges; confrontations with school, administrators, family, friends and strangers, that if you measured the stress that autism causes alone, we'd all be on some cortisol suppressing medication. In our Autism Society of America chapter (ASA), we take the time to let the members talk about something positive that happened with their kids, we call them our "golden nuggets". When our chapter began to diversify and host speakers and panels, several of us were missing the golden nuggets from the meetings. For many of us, this was the only time we could be around  fellow comrades in Autism; People who had similar paths on the same highway and it was nice for that short period of time to have empathy given and received from others.  To fill the void, my friend Connie started a Facebook page so we could talk about our Golden Nuggets and not have to wait  to share them at the meetings.

Last weekend, I posted on Connie's Golden Nugget page, that for the first time in several years, my 10 year old, #1 wore a short sleeved shirt. Now, that may not seem like a big deal to most people, but to us, it was  a huge moment. He chose to wear his new t-shirt from the hockey team's skate-a-thon. For years, even on the hottest days, he would wear long sleeve shirts. At some point when he was six, he decided that short sleeve shirts were no longer wearable. His sensory issues had surfaced and if he was happy wearing long sleeved shirts in the middle of summer, than that was fine with me. After all, I like to wear long sleeve shirts during spin or hot yoga classes just because I don't like the feeling of sweat dripping down my arms, so I could empathize on some level.

After this huge breakthrough, I began to think of how far he has come in the last year, and all the golden nugget moments we have had.

His BFF: His most social break-though was his new BFF, Will. The kids in his mainstreamed homeroom are very kind and accepting of him, and Will, is especially awesome with him. He has taken #1 under his wing and tries to engage him even though there is no eye contact. He is concerned and mindful of him and I couldn't have asked for a better situation. If you ask #1 who his best friend is, he says "Will". I called his mom and scheduled his first play-date ever,  to take them to play laser tag and they had the best time. Just seeing the two of them interact brought tears to my eyes.


His birthday party: Every year I ask #1 if he would like a birthday party or an electronic device, since the cost is comparable. Since this was the big 10, I asked him if he'd prefer a birthday party or an XBox. When he answered, "Party", I had to shake my head. Did I hear that right? You want a party? Not really believing what I heard, I asked him at random times over the following weeks, the same question and in different order, since he has a history of repeating the last choice as his answer, "Do you want an Xbox or a party?" "Party". "Do you want a party or an XBox?" Once again, "Party". Wow, I think he really does want a party.

Our close friends recently purchased "The Ultimate Play Zone" in Cockeysville, MD, so we booked the party there. We took the invitations that they gave us and attached a note. Telling them, about #1 and that it was his first real birthday party and we credited their kids for giving him such a  positive social experience at school that he wanted to have a birthday party. We invited all 24 kids from his class and  14 classmates joined him to celebrate. Every parents RSVP'd  and some kids even chose to go to his party over sports events because we let them know how awesome and unique that was. It was nice to see so many kids and parents come to support his big day. And every kid there kept the secret that the Red Power Ranger was coming to visit. The video alone will make you smile.





He got his first 100 on a test. Once, again, not a biggie to #2, the Aspy, or to most people, but a huge accomplishment for him on two planes: 1) he proved he was able to absorb and demonstrate skills, and 2) all the extra time I spent with him trying to get the information into his head, was working. He aced most of his geography tests of the United States and is doing better than "barely passing", so when he comes home with great grades, the parade comes to town. Yes Houston, I'm here.

He protests with appropriate language. This is a huge jump from "I will scream, flap and run through the house and maybe cry a bit, to "come on mom. Are we finished yet?" and "why do I have to learn this?" When I offer him a snack he doesn't prefer, he responds with, "You want to give me cookies."as if he is trying to hypnotize me into complying.

He is more aware of other people's emotions.  He has asked me, "Mom, why are you angry? If his sissies are crying he comes to me and asks me what their problem is or he asks them what he can do to help them. Long ago, we linked his lack of eye contact with unawareness of a situation, but we know now that eye contact has nothing to do with awareness. His ears work fine. If he hears someone's voice change, he is on it and wants to know why. We can use this skill to teach him some of the subtleties of human interaction, even if he has to rely on his sense of hearing over his sense of vision to read people.

It is our job to teach, direct and prepare him for life as an adult, which is only eight years away, and it is accomplishments like these that shine hope on the years to come. I'm looking forward to the next batch of golden nuggets regardless of how small they are because each one is a treasure.

The Great Clothes Change-Over

Gone are the days of Spring. I remember them as part of my childhood, the not quite cold, not quite warm days that had a little bit of wind and required a light jacket. On some days, you could go outside and try to fly a kite or do some other spring activity. The whole point was to enjoy the weather until it got to hot to move about.

Now, Spring is like a blip on the radar. When the daffodils pop up, it is still considered winter weather and then all of a sudden, it gets hot. When the temperature goes from 30 to 80 in four days, (-2 to 28c) the foliage reacts, like "oh crap, I must catch up"  and before you know it, your car, and everything else is covered in a light green haze. It's like zero to 60 in 5.6 seconds. 

And when the weather gets hot, the clothes that were in your kids' drawers are now too warm for the season. Each season I empty and restock their dressers and leave only the clothes that are weather appropriate, because fighting with a child because they want to wear shorts in February is one fight I choose not to have. I call this process "The Great Clothes Change-Over", because packing, sorting and purging clothes for five kids is an immense task. So, the weather abruptly changes, I have to go into the basement and get the bins containing the appropriate clothes. 

The boys are easier, because they are easy; Shorts? Shirts? Check, check.  I have a system for giving away what is  too small and move on with the day. Although #1 will has severe sensory issues and refuses to wear short sleeve shirts even on the hottest days. He will wear shorts if I take out every pair of pants out of the drawer.

With the girls, sentimentality comes into play for two reasons: they are the babies, my last ones, my girls, and they are girls. We all know that when we go shopping for children's clothes, the girl's section is three times the size of the boys. Girls have all the cutesy dresses, matching leggings, coordinating head bands and socks. Dressing a girl can be a big to-do. Many of these designers keep in mind that mommies are the big buyers who now can live their childhood fantasies of dressing their own children. Don't let your five-year-old self down by throwing sweats on your girls.

Girls clothes are also more ambiguous. The sizes run differently from each manufacturer, which in boys clothes, isn't that big of a deal, but with girls clothes it matters. My girls are a bit girthy, which means that they aren't jeans, snap, button or zipper material. I'm not willing to send them to the treadmill yet, they're just built like their mom; brick-house style. (I just had an image of a hearty Korean dancing) The clothing is more flexible in some ways. You can get several seasons out of knit dresses if you buy them a size bigger than they are now. As they grow the dresses get shorter and eventually can be worn as a shirt.  Leggings can be still worn as capri leggings as they grow. So, in some ways, you are getting a bit more for your money because they get more wear out of them.

When sorting through the girls clothes, instead of being able to read a label and make a decision, "keep or toss" you have to view it differently which slows down the entire process. Not many kids are willing to stand there while you try clothing on them without bribery or a mutiny. Though, with two, I could make it into a runway show and call it "Baltimore's Top Toddler". Work that hallway, baby. On second thought, just imagining changing two children countless times is enough to make the vodka bottle vibrate, so, no. 

I guess now, I have to get into my meditative stance and imagine myself completing the process so I can get the bins ready and get to work. I may have to call a friend to help me through the process. 

 Well, at least the one piece of clothing I don't have to worry about during the hot weather is socks. Just knowing I don't have to wash and sort socks for the next three or four months makes the rest of it bearable. Wait, do you hear the Bailey's vibrating? Must go check it out. 

Poopies, Pukies and Sick, Oh My

The Eskimos have almost a hundred words to describe "snow."  I have almost as many to define body fluids. Over the last two weeks, I have been immersed in the world of boogers, sick poopies and pukies and learned to appreciate the value of paper towels.  I feel like my super hero utility belt should have a roll attached to it, ready to clean messes on the fly. And boy have they been flying.


The week before spring break, I started to put plans into place of how I would keep five kids active enough to prevent them from reenacting scenes from the fighting video games. And then, our house became the Casa de Sick and everything that was planned was no longer an option. 

First we all got hit with the fever thing and just when we were beginning to get better, we got hit with the stomach virus. The fever thing managed to leave #1 and my husband alone, but the stomach virus took no prisoners and worked it's awful way through our family like a slow moving wave.  On Easter, my ear clogged up and my hearing was greatly reduced in one ear. This could be seen as an advantage with all the kids home for eight more days. Built in ear plugs. Each day passed by managing fevers, puking positions, cleaning up misc body fluids and doing more laundry than ever thought possible.

We were in poop and puke paradise and the sick wouldn't leave.  Talk about a Bounty challenge.

Try teaching a four year old the protocols of puking while they're in mid flow. "ok girls, we puke in the bathroom, a garbage can, and if you can't make it, anywhere but the carpet." Carpet is so over-rated. Just thinking about the abuse it has gotten from five kids puking all over it, makes me never want to go without slippers again. Give the kids apple juice, not grape juice. Grape juice stains.

I also had to negotiate a proper puking place for #1. He deemed the potty as an inappropriate puking receptacle. He wanted to stay in his bed, but after I explained to him that we'd have to change his bed every time he puked in it, we both agreed that for this type of puke, puke #34, the sink was a viable option. 

When sping break ended, I was hoping that the sick would leave too, but to no avail. #1 missed his first day of school this year. With three puking children at home I went through more rolls of paper towels than I can remember. At one point, I was running between two puking and one potty bound kid. Twin S looked scared when she felt a different type of poopies than she was used to. "Mommy, what are these poopies?", poop #21. "Those are sick poopies", I replied. she took a minute to process the new information and then she said in her hand waving chatter, "mama, the sick poopies are flowing like water from my butt. They don't feel so good. They splash in the water. Are you gonna wipe me?" Good observation. The best four year poet I have heard to date.

I had to Google "drinking alcohol while on anti-biotics", this is what I found: "Although alcohol doesn't reduce the effectiveness of most antibiotics, it can reduce your energy and delay how quickly you recover from illness. So, it's a good idea to avoid alcohol until you finish your antibiotics and are feeling better." 

Only one more day to twitch through and hopefully, fingers crossed, everyone is ok by then. Note to self: buy more paper towels.

 Magical Snow

Some people just love snow. They were born in it, would make a house of it, bathe in it. They bring their offspring in the snow to frolic; not me. I went to college in snow country, Oswego, NY. Aside from walking to class in it, and making drunken snow bunnies,  the recreational value was lost on me. Being cold, is just not my thing. I mean, I went to school in ski country, and I never tried it, ever.

Now fast forward, five kids later. You'd think that my paradigm of snow had shifted. After all, kids love snow. The magic of childhood is seen in a child's eyes while they are discovering the joy of snow. Yea, it is also there when they are sleeping. I like that better.  I've seen many of my neighbors with their one or two kids outside playing in the yard and they have it easy. You feel like you have to take your kids outside too, to keep up with those neighbors. Otherwise, the neighbors will point to your house while talking about you and say, "She never lets those kids out of the house. I never see them outside." Well, lady, we play in our backyard for a reason, YOU.

Try dressing five kids for snow. Just the thought of it makes the vodka bottle sing my name a million times louder. Because, to get that amazing task done, it will suck the energy out of you for the rest of the day. You have to find their snow stuff,(in MD, it snows so infrequently, that the snow suits and gear are among the holiday stuff that is used once a year, along with the vase some relative gave you that you have to keep and display if and when they ever come to visit.) So you find their snow stuff and then you have to dress them or facilitate dressing. 

#1 can dress himself, but somehow, he still thinks that we are more related to dolphins than we really are. Baby, your butt does not require the same exposure to air that a dolphin's blow hole does. Keep it covered. I promise you, you will not be oxygen deficient. Yes, pants are supposed to cover your heiney. So, I have to help #1 pull up his pants to a suitable height. #2 dresses as if he is a messy version of superman changing in a phone box. Think Chris Farley emerging from the box dressed as an Eskimo and you have a great visual. #3 can mange mostly autonomously, but we have the same "butt needs air" problem. Lastly, the twins need help every step of the way. But now, they like to run laps around the house in between items.

The time comes when they are all suited up and resemble variations of the Michelin tire people and then it is time for the item I despise the most: the gloves or mittens. Why is it, that trying to get your kid's thumb in it's allocated section in the mitten, harder than understanding the theory of relativity? When you're holding the mitten and guiding their hand into the mitten, somehow the thumb goes awry and no matter how you try to manipulated the mitten, that freaking thumb will head off in some juxtaposed position making you go through the process of putting on and taking off the mitten enough times that you either let the thumb remain rogue or you send them outside, sans mittens before you lose your shit and wind up saying those bad words, as you chuck the mitten across the house. And that is when #1 walks in, puts his face in my face and asks, "What's wrong mom? Why you so mad?" Gotta love him. 

Gloves are worse, they mock me with with all 10 fingers. They look so innocent and pretty until your children try to put them on, and then it become Houdini's magical evasive gloves. It may be easier to catch salmon with your bare hands than to put gloves on a kid. Even watching them try to put the gloves on is painful. You try to let the kid be autonomous and you have to slap yourself several times to prevent yourself from grabbing the glove and helping them. After taking a Xanax to get through the last five minutes of watching your child struggle, you take the glove thinking you can get it on, 1,2,3, but you can't. For some reason, it won't go on. All of a sudden your child has twisted their fingers to resemble 94 years old rheumatoid arthritis hands. And you have to stifle the desire to chuck the glove across the room so #1 doesn't come in to ask what the problem is.

When you finally get out in the snow, you wonder how long it will be until someone has to go potty, want something to eat, throw snow at a sibling or want to come in.  You have to grab all five sleds because no one wants to share and remember to grab their helmets. You know the other mothers on the hill will be ready to hit the child services number on their phone if you don't have your children properly protected.  If you're lucky, you'll get a couple minutes and then you have to make the decision to stay with the kids outside or go with the one who wants to go back in. 

 Maybe if it snowed more often, I would have a snow routine in place that would make the transition easier. Is it great to watch the kids enjoy the snow? You bet. And it even makes all the effort to get there worth it. Well, at least some of the time. But, a coffee with Bailey's always makes a good reward for the effort.

 A Puzzling Disorder

In honor of World Autism Day, I am re-posting the speech I gave last May as key note speaker at "A Puzzling Disorder" fashion show/fund raiser. This show was put together by my close friend and fellow mom of a child with Autism.  Photo of me and Nikki Harris, founder of HGE Designs.

My name is Shari. I am the mother of five children, three of whom are on the autistic spectrum. Yea, let me repeat that, three of my five children have autism. Usually when I meet people and they learn that I have five children, their heads jerk back in surprise. Maybe its because I look so amazing...and when they learn that my three boys are autistic, their heads jerk back again and sometimes the questions come. "Is it genetic? How does it happen?  Is it a Jersey thing." (yes, I was asked that) but the truth is, that no one knows how you get it. No one has been able to figure out the cause, and what we know right now is that there is no cure.

As a parent of a new baby, we naturally are aware of the developmental guidelines and milestones that they are supposed to reach. And when we notice that they are not reaching them, we start to worry. Many of us have had pediatricians that say "just wait, the words will come. And if they don't in 6 months, we'll do something then." So you go home and wait. And when our child is still not talking we finally get the referral to take them for a hearing test and then later to the neuro- developmental pediatrician. (A word that I could not say for months without having to try a few times.)

From the moment the diagnosis is made, every parent goes through a period of re-evaluation. It is when you realize that the fantasies you had, about the type of child you were going to have, were not going to happen. And for most, even reaching a parallel to our own childhoods was something that would be out of reach. And so, as a parent you go on the road to understanding everything you can and you question everything, including the fish you ate during pregnancy, the immunizations, the environment. And when you realize there are lots of theories, but no answers, you begin to formulate what your child needs and then figure out how to get it. You seek out the experts and learn all the lingo. You learn all the different types of therapies, the scope and modalities and learn to speak in acronyms. The BCA is doing ABA, working with the OT for sensory integration. What? This is certainly a language I didn't speak even after my first son was diagnosed. But 7 years later I speak it quite well.

And then you learn about how the public school system deals with your child. For many of us, we all enroll our kids in school with the belief that the school will do what is best for our children. And then, we realize that once again, we had to reassess a fantasy. We realize at that moment, that WE are the experts on our children. And as much as we want the schools to sweep in and make it OK, with all the therapies they need,because of course they HAVE to know more that you, it just doesn't happen. We, as parents are the biggest and loudest advocates for our children. It is the mighty parent that fights the noble fight to assure the developmental needs of our children are met. Cost is the bottom line for public schools. And most times the needs of your child are placed way below the districts bottom line.

Many of my friends and family ask me how I do it. How do I deal with 3 autistic kids. Well, they are each different and have unique and individual skill sets and personalities. The best way to paint this picture for you is to tell you about a note I posted on Facebook in December where I wrote how each of my children answered the same question.

"Who do you want to give cookies to?"

#3, (PDD/NOS); He named the five people he sees and has interaction with regularly: The teacher, teacher's assistant,the afternoon assistant who helps out when the morning assistant is out, the Librarian, and our neighbor, Becky who he adores.

#1 (Autism): I ask him this question, he voices a loud "ahhh" and runs back to the TV. I grab his face and ask him again and he runs away again, "ahhh". Finally, I ask him loudly while holding his face and trying to get eye contact and he names his two teachers. I then ask him, "what about Marco?" (his aide), "yea" he responds and runs away, "ahhhh"

#2 (Asperger's) He gets a pen and paper and makes a list of every teacher, custodian, secretary and parent helper in the school. There are close to 30 people on the list. "OK, Julian. Great list", I say, "but, you should only give to the people that you see and those you want show appreciation to." "OK mom" he answers. He helped assemble the packages and gave out 17 containers of cookies. He loved walking around the school handing them out.

Each child is different and each requires their own schedule and behavior plan. Every day it feels like someone handed me a Rubik's cube, or three, all mixed up and my job is to solve it everyday. Some days it is easy and some days it takes all day or never gets solved. This is why many have referred to autism as a puzzling disorder. Each child is different and complex. Each requires an individual and unique plan for understanding and helping. Unlike standard diseases such as kidney disease or Lyme disease, there is no definitive cause and no standard treatment. The manifestation of this disorder is individual. and many times it can piggyback with another disorder such as ADD, ADHD, Epilepsy, Anxiety disorder, OCD, and food allergies.

Being a parent of autistic children means you have to teach them many things that come innately to most and hope they are getting it. (I remember when we moved here from New Jersey 18 months ago (like you couldn't tell) we met some of the neighborhood kids and one asked me, “Does Isaac has a brain disease?” It caught me off guard, but I thought about it a second and then I answered him. "Yes. He does. And what that means is that he has trouble doing things that are easy for you and me. He really does want to talk to you and play with you and play with you, but he doesn't really know how and we have to help him. Do you think you can do that?” He said “yes” and I knew he felt better because he now understood and that he could help.

Being a parent with autistic kids means that you talk and repeat things a lot. Since they have a difficulty with modulating their volume, I am constantly telling them "indoor voice". (which gets me nowhere). It means you have to grab your kids head sometimes or speak robot to get any type of eye contact. It means having to say their names several times using several different pitches and volumes to get them to respond. It means telling them EVERY time, several times, to wash their hands or do most daily tasks. BUT, it also,means taking a moment to appreciate the one time in days that they have a little conversation with you which includes answering questions and giving eye contact.

It means you have to take everything that is abstract like interpersonal communication and make it tangible. I had to explain to my Aspergers kid that just because you think someone's shirt is ugly, that you don't have to say it. I tell them, "words can hurt just like fists."I had to explain the different reasons people yell: "surprise, fear, frustration and anger". And I have to explain which emotion I'm feeling while I am yelling at them. (talk about having self control) and it also means, that you take nothing for granted. Every little step is a victory. Each accomplishment acknowledged.
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And then you have to teach them social rules, another very abstract concept. What is appropriate and inappropriate to say,  and when you can say it is very challenging. I made a chart describing the things you need to say and not say to make friends. I remember I was getting feedback from school that one of the boys was giving his penis some extra air time during school and I had to give them the talk. I'm in the car with all three and say "ok boys, when does the penis come out? Only in the bathroom and in college. Got it?" And then you repeat it a bunch of times and make them say it back and hopefully it sinks in.

I had to teach the boys "not all dogs are friendly and not all people are nice". The first time a person was unappreciative of my Asperger's kids questions and walked away from him, Julian asked me why the man didn't want to talk to him, he was confused.

So not only do we have to be able to provide a balance within our families, we have to deal with the people that don't get our plights or our kids issues. The looks we get from people when our kids throw themselves down in the doorway of a store they have never been to, because they have anxiety of new places. The odd comments from strangers and sometimes family members who mistake behavior issues with a lack of discipline. And the overall lack of compassion and support that comes from not understanding the complexity of the disorder. One year for the holidays, my brother and his wife gave my kids, monopoly. Yea. Monopoly, to my ADHD, can't sit for 5 minutes, autistic children. Some people just don't get it.

And then we realize that some of our friends and family stop calling or visiting. They are not comfortable and their kids don't want to play with ours anymore because they are weird. So, on top of it all, some of us get abandoned in our time of need. Awesome.

So, you seek out people who understand. You focus of the positive stuff and count our blessings. And you find humor in the quirks and intricacies that define them. Yea, your kids may be good at sports but mine knows the gross domestic product of Chile. So there. Your kid might be popular, but my kid can crack passwords. If my 9 year old sees you enter a password once, he will remember it forever. He figured out on his own how to get around parental controls. He even figured out that he can keep windows open on the computer, the ones he isn't allow on, like you-tube and keeps the ones he can be on infront so he can flip back when I walk into the room. He also can sing back songs he heard once) My 7 year old has an amazing memory and can tell you every present he got for each birthday. He memorizes Wikipedia and the CIA Facebook. And my five year old will take any iPhone, itouch and iPad and rearrange all the apps into folders and the he will scour iTunes for new apps. My 9 year old is a food poacher. At the pool he will walk up to anyone eating pizza and say, “Pizza. I love pizza. Can I have a piece?” People usually don't say “no” to his sweet little face. So he has learned to work it.

In the autism community, there are two types of parents, the type that put their head in the sand and hope that their child gets what they need and then there are the fighters. The ones that own the fact that although they can't cure their children, they can fight to make their lives just a little better. So we look at why we are here this evening.   All because one of our warrior tribe wanted to make things better not only for her child but for all involved.

It is my great privilege to introduce to you this evening , a great friend, incredible designer, and most of all, an amazing mom. It is because of her talent , tenacity and devotion to her children that we are all here this evening. Please stand and let's welcome Nikki Harris to the stage.

 For more information on HGE Designs, please visit: http://www.hgedesigns.com/ or
 http://www.facebook.com/groups/307856060453/

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.