Coming out of hiding

Jill and I at the reunion

I was attending my high school reunion and a former classmate approached me. "Why aren't you writing the blog anymore? I want you to know how much you helped me when I needed it most. You need to start it again."

She actually liked the blog long before she realized I was the one writing it.

I explained to her, that sometimes life gets in the way.

Shortly after my last post,  I took a job as a personal assistant for a CEO. It was demanding and they became my sixth and most demanding child. The money was good, but the stress was greater. When your kids  beg you to quit because they miss spending time with you, well, that's the signal things need to change. So, I quit after my third year.

Three years ago, #1 started middle school and  two years ago, #2 entered middle school.
That journey is worthy of a post all it's own.

Add school, sports, scouts, music, gardening and other activities to the mix, and life became an overwhelmed fury; constantly running from place to place with my head barely attached.

 Any writer feels humbled when someone appreciates their story. Sometimes all  that is needed to get back on track is a little nudge and some encouragement. So, thank you Jill, for taking the time to tell me that what I share matters.

And with that, the blog returns.
Stay tuned....

I'M NOT DOING IT!

When #1 got off the bus, he was agitated. Usually he does the same thing everyday; walk in the house, walk right to the family room to see what is going on, check out the kitchen for snacks on display, and then take off his shoes and backpack. While he does his rounds I ask him how his day went and he always replies "great", before he runs upstairs to get the iPad. 

Today during his rounds, he said to me, "I'm not performing with Mrs. Allen's class tomorrow. I'm not doing it."  And then he ran off. Well, ok then.

Volunteer appreciation day was scheduled for the next day at school and his special education teacher asked him to perform a song with the other kids. He has a great voice and can bust a serious move, so it seemed like a good idea. That was until I heard him, "MOM, I'M NOT DOING IT!"

I wondered what could be the issue. Was it because he was fully mainstreamed and didn't go into her class anymore? Was it that he didn't like the song? That's why he won't sing in chorus. I told him I wanted to talk to him. I placed my hands on his head and turned his head so he'd look at me. I asked him, "Why don't you want to perform with Mrs. Allen's class? I'll be there."  

He looked at me and told me that if he performed the song, then he would miss a video that his mainstream class would be watching at that time. And apparently, that bothered him immensely

Wow. He just TOLD me what he was upset about. I didn't have to play the guessing game. I didn't have to ask a million questions and I didn't have to send emails to the teachers for insight on the problem. He simply told me. Wow, wow, freaking wow.

We have certainly come a long way. Just him being able to voice that feeling is a million miles from where he used to be. It wasn't long ago that he would get sullen and forlorn about such a trauma because the world would certainly end. And now, at 11 he is finding his words to express his feelings. 

And maybe, he has also learned that when he uses his words, we can help him. 

I told him, "let's come up with a plan. I know you want to watch that movie and Mrs. Allen and I really want you to sing, so how about we arrange so you can watch the movie after so you don't miss it?"

"Ok, Mom. I'll sing in the concert." he said as he ran off. 

Crisis averted for now. 

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