World Autism Awareness Month: A Time To Focus On Our Similarities.

Tomorrow, April 2, is World Autism Awareness day. I thought about all the things I could say about awareness and then I realized that the people who read this blog know all this stuff. With the latest release from the CDC about the number of children diagnosed with Autism now at 1:68, there will be a day that everyone will know or be related to someone with Autism. And unfortunately,  It is only when something affects everyone is when things will change.

I decided to re-share excerpts from my post: We're More alike than you think. The post was inspired by Willman Stillman and my self-observations. Everyday I look at my children and realize I have more Autistic qualities that I realized. I have also realized that it not necessarily a bad thing. Maybe melting and throwing myself on the ground if I can't find my keys may be over-doing it a bit, but many things are really a core part of me; like my ability to memorize information. It comes in handy on Black Friday for sure.

You asked me a question. Here's your answer.

When people meet me and learn that I have three children with Autism, they look dumbfounded. 
I really think it throws them into a confused daze, because many times, they look at me and ask, "How could that be so?" And, "What causes Autism?" Like somehow through ownership, I know why my three boys have different manifestations of Autism. 

The answer is, I don't. My guess is as good as anyone else's. 

I do have my hypothesis, though. 

I believe we all have certain characteristics that are passed down through genetic lines, like hair or eye color. But there are also less tangible characteristics that jump on the band wagon. We can all look at something in our children, ie: perfect pitch, introversion, ability in sports, science, math, music, quirkiness or some other abilities we possess and link it to our genetic line.  When we choose to reproduce, our offspring inherit whatever is mixed among the DNA. We have no control over it. 

With that said, most of us have heard from someone in our families: "Uncle Johnny was always a little off", or "Uncle Pete didn't talk until he was five", or "when I was little, I made up a language no one understood but me," or "I used to memorize books of facts at tedium because it interested me. And my favorite:  "Ben was always anti-social and always said inappropriate things at family dinners." This means that in addition to our inheritable physical traits, we may also possess the genetics that can allow us or our off-spring to behave like those "off" relatives. 

We all know that in the "good ole days" people had disabilities and developmental delays. However, the prevalence was no where near the level it is now. The diets, air quality and medical precautions were far different than they are today.

Now, take the genetic factors and add in the stressors from the environment. Then, add in the low-level, unmeasured contamination from our food, fertilizers, and food packaging. There are a myriad of affects that we can endure from consuming foods that are processed heavily, packaged with potentially dangerous materials, and lack any nutritional value. Our bodies become a petri-dish begging to mutate. This imbalance can exacerbate certain tendencies, heighten sensitivities and in some cases, make us just plain sick. Our DNA, somehow becomes affected and even a marginal shift in the code can affect us. Autism is in many ways a natural amplifier. It pushes sensitivities, thoughts, obsessions, feeling and obsessions to a higher level. 

However, being able to determine if our DNA is affected is almost close to impossible because the affects are varied and subtle.  No one can pinpoint any one cause and Autism remains to be an enigma. 

I remember a conversation I had with our new pediatrician when we moved to Maryland. I told him that #1 stopped speaking and turned off shortly after he received the MMR, (Measles, Mumps, and Rubella shot). He was quick to tell me that the one study published on this topic was invalidated. I didn't know about the study, yet I didn't think that it was so cut and dry. I explained, "You know how some people have adverse reactions to certain medicines, drugs, food or the environment? Well, it means that every immune system is unique and different than any other. That is why there are trials with medicine and why some people can't have penicillin. I am saying that HIS immune system, perhaps, had an adverse reaction to the MMR. Especially since there was a noticeable change. Did he have a fever? No. Was he sick? No. But something inside that sweet little 18 month old child shut off that week and I know it wasn't the crackers that caused it. Something caused it. We put a foreign body into his system and he reacted. And maybe, his system wasn't able to handle it."

So let me clarify, am I blaming the shot? No. I am saying that the maturity of an immune system is hard to gauge and should be taken into consideration when introducing foreign bodies. When you enforce a standard of care on a diverse population, there are going to be ramifications.  

This is where the science has to adapt. We should be looking at Autism as a cocktail; containing many different components that affect comparable areas of the brain. It is when we can accept there isn't one answer that we can move forward. 

So lady, did you regret asking me why do all my children have Autism or why so many kids are being diagnosed with it? 

As I said, I have my hypothesis. It is MY opinion. I can see that many of my children's Autistic characteristics are in some ways just exaggerated quirks from myself or their father.  And in the cases in which we both had the same quirky tendencies, the children got it double.  

And considering the way we as humans live on this earth presently, it is no wonder why we are having problems. Our treatment of the earth is affecting us on a personal level.

I have faith that someone will figure it out. Unfortunately with this kind of issue, it may be decades, if not longer before there is enough data to make any type of hypothesis. 

Be warned, no one is immune.
Autism is everywhere and might be in your genes. 

Snow Day

Today we had another snow day. I read many of my friend's Facebook postings about hiding in closets and wallowing in despair, but I'm not one of them. 

You see, I actually LIKE not having to get five kids ready to leave the house. I'm sure my body does too. If someone were to monitor the level of cortisol in my system the 10 minutes before we leave the house in the morning, I'm sure it would be off the charts. Snow days mean no ugly transitions from the bed to anywhere. Forget about getting dressed, f-that. Stay in your pjs. Why? Because I don't care. Underwear? Well that is optional isn't it? I don't have make sure everyone has socks, is dressed, fed, brushed and has their shoes and coats on ready to roll. No lunches, backpacks or that f-ing homework that they remembered they hadn't done at 9:30 pm. 

And just when you thought it couldn't be any better than that, there is one thing that makes its super-fantastic: I can sleep in. Yes, you read it correctly. #2 is in charge of getting the twins breakfast.  All I have to do is make sure there is a fresh box of granola opened and ready to pour. No fuss, no muss. After all those years of being a slave to the kid's wake up time, I am finally free. 

Although I can still hear their super-loud voices throughout the house, it's easy to ignore when you are engulfed by flannel and down.  Must get earplugs. 

So what do we do all day? I let them play. Believe it or not, the fighting is really minimal and there are so many possible play companions that it works. 

I do make them read a bit and I work with #1 with his reading, math facts and saxophone practice, but it is no more than I require on a school day. Well, at least that's what I tell them. 

And I get to do all the housework and sometimes more that I would usually do. I know. You jealous?  I have been teaching #1 to do laundry and today he did several loads. I even started teaching him how to fold. I got the twins to help clean the bathroom and kitchen. #2 & #3 actually picked up some of the Legos that I asked them to clean up. Just show them the Lego-eating-vacuum. It works every time.

So friends, I'm sorry your kids drive you nuts and you are hating the snow and the snow days that come with it. But I really don't mind. That is, as long it is just one snow day at a time. 

Just Give it a Try

I admit, I dropped the ball a little. Once the girls began going on the potty full time, I really didn't mind begin summoned, "I"M DONE", to wipe their bottoms.  Hey, the hard part was done. I didn't have to follow them around and watch for the potty dance, clean up accidents,  or buy diapers which greatly depreciated the wine fun. 

So when they called, I assumed wipe duty.

And now they are five and will be starting camp soon and I realized that they will have to be transitioned out of this dependence. 

So this morning, Twin "S" was on the potty after her  announcement, "I HAVE TO GO POOPIES". When she was finished, she called out her usual, "I'm done." I handed her the paper and told her, " You know, you're five now and you will be going to music camp soon. I won't be there to wipe your bottom for you and you need to learn how to do this yourself."

She scrunched her face up and said, "then I won't go potty at camp."  Yea, good luck with that one. Followed up with, "why can't you come with me?" Well became most kids don't travel with their own official butt wipers.

I then listed all the kids we know that wipe their own butts. She seemed surprised that her brothers have the skill and she thought about it for a minute, assessed the challenge, and then said, "you do it."

I held my ground and then did what anyone else would do, I made up a song and Disney-fied it.

"Give it a wipe and drop it down,
 then they'll be applause around,
Just give it a try, just give it a try." 

"NOOOOOOOOOOOO"
 
"Give it a try and and wipe it up, 
and I'll give you two thumbs up,
Just give it a try, just give it a try."

 Her face scrunched up and she screamed, "NOOOOO, YOU DO IT!!!!!!"

"Give it a try, it'll be ok
 you'll wipe your own butt today
just give it a try, just give it a try"

"MOMMMMMMMY YOU DO IT"

So I kept singing and then added some ultra-fine dance moves, but she was not buying it.

Convinced my song was just fine and the critic was hostile, I walked away for a few minutes.

I returned a few minute later, looked at her tear-streaked face and the drop of liquid boogers resting on the crease of her lip, and felt the pang. I needed to ease her out of this distress.

I asked her, "are you afraid of getting poop on your hands?" She nodded. "Well, the paper will touch the poop and you won't get any on your hands. That's why we always wash our hands after we go potty."

I convinced her to try together and although she didn't exactly hit the target, she gave it a try and I finished up.

The Disney finale:
"You gave it a try, you wiped your butt
and now I'll give you two thumbs up.
You gave it a try, you gave it a try"

I asked Twin "R" if she was ready to wipe on her own when she went potty. She replied, "I will do it myself and you won't sing a word."

So much for my new career as a singer/songwriter.

The critics have spoken.

Dear Music Teacher

Dear Instrumental music teacher, I just got #1's report card and I see you gave him a "C". I read your criteria for grading and I am confused and angry and based on my Anger Management post, I really want to punch you in the face.

You see, I was a music major in college for three years and I went to school with people like you. The introverted music performer who got into education because it was really the only way to make a living. The thing is, you are a pretty crappy teacher when it comes to educating my kid. I watched you in concert, you had no fun, you sparked no excitement. You loved the talented kids and tolerated the rest of them.

You see, at #2 & #3's school, they have an awesome instrumental teacher. He is funny and makes everyone in the school wish they were old enough to play an instrument. He is a representative of the entire music program, the first face the kids see and their first exposure. If you don't ignite them, they will not be inspired to play.

You don't ignite the kids, just my nerves.

When we talked at the beginning of the year, before he chose his instrument, I told you that saxophone was my primary instrument in college and if he didn't get to play percussion, then saxophone would be his second choice.

So when you said that you start all the winds on clarinet and then change. I was confused.  Clarinet is an open keyed instrument. Take a kid who gets OT because they have fine and gross motor issues; who will already have some challenges with sitting up tall, blowing in to an instrument, and on top of it,  add the need to cover the holes, you are asking for failure. 

I went along with your decision and as a precaution, asked the OT to  accompany #1 to lessons to lend a hand and offer strategies, but you sent her away because you felt she wasn't needed.  I played clarinet too, so I helped him everyday as part of his homework and he wasn't getting better. I finally wrote you an email and told you I was switching #1 to saxophone. 

We practice five days a week and he has made so much progress since he switched. We work on all the band music and the exercises. The hardest part is getting him to learn the notes but since he has perfect pitch,  I sing the notes, and he can match them. You even said he was getting better.

And then his report card came home and you gave him a "C'. He had never forgotten his instrument, always was prepared and got a freaking "C". I saw that paper and lost my mind. And wrote you this email:

Hi ---, I just received #1's report card and I'm really confused. I log all his practice time in the front of the lesson book, yet you penalized him for not practicing. If you look in the front of the book where the log is, you will see the information.

Secondly, I don't know how you can grade a kid's behavior when it is specified in the IEP that he has a disability. That should be taken into consideration, and the fact that he is cooperating at all should be nothing short of amazing.

Lastly, I don't know how you can penalize someone for not having adequate note reading skills when you write all the notes above or below the note. That really doesn't encourage someone to learn the notes, rather to use it as a crutch. And, once again, if you read his IEP, you would see that he has transition issues, which translates as, teach him the way you want him to be. I sing the notes to him and NEVER write them down.

You really need to rethink the way you're choosing to evaluate him. I trusted you once with choosing an open keyed instrument on a kid with fine/gross motor issues.  But, now it obvious you have no clue as to what his IEP says at all, nor what fine/gross-motor delays really translate to in your field. That is why I sent the OT in to help when you insisted on him starting with the clarinet. I saw the red-flags and you didn't.

I am asking that you look at the log book in the front of the lesson book and submit a grade that reflects your oversight. 

Thank you

March Fourth

This morning I  was getting the kids ready for school, I glanced at Facebook and read a post of a great writer-friend from college. She shared a quote from Harry Connick Jr, "Today is the only day of the year that means 'go forward' - March 4th."

And with that, I was inspired. I thought about how time marches on unforgivingly. How seemingly in  the blink of an eye, my first baby is now 11 and the twins are five. Time marched on as I was getting the children evaluations, going to OT appointments, visiting the Behavioral Psychologists, and making incentive charts. 

Time passed with every book I read to the kids, every tea party, soccer game, hockey practice and with every time-out and meltdown. 

I thought about how much time has passed since we left our home in New Jersey to start a new chapter in Maryland. In August it will be four years and although there are still boxes we haven't unpacked, I can finally say that everything has fallen into place and we have a good life here. We have friends, people we can count on, great doctors, and a great Autism & special needs Community.  I am finally teaching yoga again and it will just keep getting better.

So today, on March Fourth, I am inspired to March forth and be mindful about the swift passage of time.  I will remain steadfast in my belief that each one of my children, regardless of their issues, will grow up to be nothing short of amazing. And, I will continue to believe that each day has the capacity for greatness, and make will make it my mission to find and share it. 

Sometimes, inspiration is just a Facebook post away.

So march forth friends, because St. Patrick's day is right around the corner.

Game Stop Drama

Every weekend I take #1 with me to do errands. Sometimes, as part of our outing, we stop at Game Stop and let him walk around the store, play some of the games and look at all the new video games. I love the staff at Game Stop because they love their jobs and know all the kids. #1 is comfortable asking them questions and they gladly engage and answer him.

This week, I told him the order of the errands. There were four stops and Game Stop was our second stop.

But when we pulled up to the store, it was gone. There was just an empty shell of the store that used to be. Oh crap, oh crap, oh crap. And when he realized it wasn't there, he fell into his default mode, "OH NOOOOO! YOU MEAN IT'S GONE FOREVER? My precious Game Stop, you can't be gone. Where are you? ARE YOU GONE FOREVER? Oh Mom, THIS IS WORST DAY OF MY LIFE."

I reassured him, "It's ok, there are two other locations. Let's do the third errand and then we'll go to the other one."  We got to Home Depot and he continued to lament on such a tragedy. He couldn't focus on the task and just wondered aimlessly around the store saying, "Game Stop is gone forever. I will never see my favorite store again."

I drove three miles north to the next location. We parked, got out of the car and discovered that store was also gone and another store was in it's place. Crap, crap, crap. What the hell? And then he absolutely lost it. He threw himself on the ground. I reminded him there was still one store we could go to and I bribed him with brownies to get up. Glad there weren't a lot of people around to stare.

We got back in the car and I was nervous. I had one more shot at this and if we failed, then it would be bad. There is one more store five miles in the opposite direction. We are going. Why the hell are they closed?

I told him, "I know this is really hard. Let's go to the other one and if it's not open, you can eat whatever is left of the brownies when we get home." It did calm him a bit, but the questions kept coming. "IS IT GONE FOREVER?????"

We were only supposed to be out an hour but we drove south to the location of the last store. When we pulled in the parking lot, #1 spotted the store, intact and open. With a nervous laugh and a sign of relief, he said, "Mom, it's here. I am so happy." He got out of the car, walked to the door and before he entered he said, "My precious Game Stop, I thought I lost you forever" and then kissed the window.

We walked in and after he gave one of the game displays a hug, he approached the manager and said, "I'm so glad you're here". And then he demanded answers. "Why are my stores closed? And then he ran off to inspect the store before he could answer.

The manager explained that there was a conflict between the landlord and Game Stop corporate so the store closed and will reopen in another location in the future.

We saw one of the staff members from our store and he told us it had closed right after our last visit two weeks ago. As I was talking to him, #1 walked up to me and placed a Disney Infinity character in my hand, "Here ya go, Mom. Are we getting this?"

"Yea buddy, we can get this", I replied. "This was a rough evening for you and you handled it well. At least now, you don't need those brownies."

He stopped in his tracks, turned around, looked at me and said, "Ah, Mom, I still want those brownies." Direct eye contact.

I smiled and said, "Ok buddy, but just one."
He smiled and ran off to look at another display.

Whew, Crisis averted this time. I can put the cape away now.

Dear Game Stop, please reopen your store in my town quickly. Sincerely, Shari