Saturday, April 30, 2016

I'm Not Going to Prom

Hello Dear Winos...

I must first apologize for my LOOONNG absence- I just stopped writing and never started back up again :-(

But I am back, and not even writing about what you would expect- Autism Awareness Month, Inclusive Education, or even autism for that matter.

Today I want to talk about not going to prom. I didn't go to my senior prom, on account of just having a baby and all. I did go to prom as a sophomore - asked by a senior- who also happened to be my 2nd cousin- who I still suspect felt sorry for me- and his date got food poisoning the day of.

No- I'm not going to my senior girl child's prom. Of course, I'm not talking about LITERALLY not going, sheesh, I'm not that bad of a smother (yes I am). No- my beautiful, amazing, smart, funny, talented Teenzilla wants absolutely NOTHING to do with her senior prom. And I am heartbroken.

Silly? Selfish? Yes and yes. But I accept these feelings and don't even feel bad about them. Since I birthed a girl child, I have had elaborate daydreams about first boyfriend (he was a weirdo) first formal dance (went with her friends) and PROM. The last hurrah of her high school career.  Shopping! Frilly princess dress! The hair! The nails! THE SHOES! The date showing up in a limo and their  perfectly matched corsage and boutonnière! The pictures!  In my silly daydreams I have pictured all of this happening and it never failed to make me smile.

But my wonderful, independent, headstrong, amazing daughter isn't going. Not with a boy/girlfriend (hey- whatever makes her happy) or a group of friends- or even saying screw everything I am going by myself and I will SLAY.  She HATES dances- does not like mainstream music- and has a like/dislike relationship with her classmates. Who I am I kidding- she INTENSELY dislikes the majority of her class, and I can't say I blame her- a lot   of over-privileged kids (what do you expect, we live on an ISLAND FFS!) that she has nothing in common with, save a very select few who I love as if they were my own.

Nope, my amazing kiddo will not be dress shopping, will not be getting a frilly, huge, Glenda the Good Witch type dress, or getting her hair and nails done, or picked up (in a limo or otherwise), or taking a million photos, or getting embarrassed when I shed a tear or two because this truly makes her graduation and departure for college so much more real, and my little girl in pigtails is grown up.

I have nobody to blame but myself and her dad. We raised this strong woman-child, we instilled the values she has, we encouraged not following the crowd, not doing things because everyone else was and to follow her heart but listen to her brain. She has never been anything but unique. She has always been an old soul, wise beyond her years.  She has never conformed to social norms, or rather never more than enough to make life a little easier on herself. She is opinionated, brash, anxious, and bold. She is an anachronism.  And my heart is practically bursting with pride at the fantastic person she has become.

But I am still selfish. I still want my prom daydream. I still want all that goes along with being the mom of a senior girl getting ready to go to prom.  I won't lie, I've cried about it. I threw myself a pity party and drank a bottle of wine to drown my sorrows. My self-centered sorrows. My broken daydreams.

This isn't about me. This is about this lovely young woman I have raised.  This is about her ideals, wants, values, thoughts and dreams. The ones we taught her. The ones we encouraged.

Yeah... my brain knows all of this. It's my heart that is having a hard time accepting it.

Friday, May 9, 2014

Mother's Day...Get it together family!

Mother's Day. A day to honor the person who gave you life, the person who knows where everything is all of the time, the person who selflessly gives up so many things to make sure her family is happy, safe and feels loved. But flip that coin, and you can get a bitchy side. And I fully embrace my ungrateful, whiny, bitchy side when it comes to this day. For years, I smiled and gushed about how I loved the homemade gifts and home burnt, I mean, cooked breakfasts. I truly cherished any effort made to make this one day a year special. But as my kiddos have gotten older, I have noticed there is no thought, no pizzazz, no EFFORT in doing something special for me on MY day.

I am my family's EVERYTHING- as most mom's are. I am the cook, maid, chauffeur, doctor, lawyer, teacher, warden, confidant, laundress, advocate and cheerleader. I go to every meeting, school function, concert, play, you name it, I do it. I know right where that shirt you NEED is, and I will stay up late to wash it too. I do all of these things and so many more, and I do it because I love them with every fiber in my body, they are my sun and my moon, forever.

They know what I want on this ONE day to honor me. I like quiet. No video games or sports (unless I choose one of them) playing on the TV. No laundry or cleaning. No fighting among kids. Maybe take me out to breakfast or brunch. Or let me stay in bed all day if I choose with NO INTERRUPTIONS. Make me a mimosa. Or three. A day trip to the spa- now you're talking. But I most definitely do not want:

1)A burnt, partially cold breakfast in bed. First you woke me up. Second, you made a huge mess. Third- I don't like eating in bed. The flower/weed from the yard does not pretty up this disaster. So thanks, but no thanks.

2) Asking me the day before what I want. If you haven't at least THOUGHT about Mother's Day prior to the day before- just forget it.

3) Anything that implies household chores. Vacuums, pots and pans, a 50's style apron. Nope, nope and nope. Save that shit for birthday and Christmas.

4) Jewelry. Yeah- you heard me. I wear my wedding ring, occasionally earrings if I can find a matched pair. But I don't need or want anything else. Now- get my wedding ring cleaned- that would be appreciated.

I would enjoy a day of chillin with the kids- binge watching something on Netflix, taking random naps- and not being responsible for anyone's meals, laundry, or have to play referee. Don't ask what needs to be done- just do it. Don't make snippy remarks to antagonize someone, and don't be sarcastic with The Boy who doesn't get it anyway, and ends up in meltdown mode. Don't ask me where ANYTHING is (unless it is my empty wine glass- I will be happy to point you in that direction) and don't begrudge me MY day. I love you all, and am grateful to have such a beautiful,wonderful family. Me getting a day "off" won't change any of that.
And please- don't forget- this is my 12th Mother's Day without my own mom. I miss her every day. This day is one of the hardest. I might be kind of weepy. Don't ask questions, and don't make a big deal of it if I burst into tears and run upstairs. It will pass. Just have another glass of wine waiting when I return- and everything will be just fine.

Friday, March 7, 2014

Screw you Daylight Savings Time!

It's that time of year, the time when we "spring forward" and gain extra daylight, anticipate the arrival of spring and most importantly LOSE AN HOUR OF SLEEP! In an autism household- sleep is a precious commodity, one that is horded like fine jewels or our favorite wine.  Nighttime wanderings, odd sleep schedules and the like is something that most parents with kids on the spectrum endure. Melatonin is the Autism parent's best friend. But when those clocks change-  at either time of the year- it can send our kids into a tailspin that can take a while to recover from.

The Boy, like most autistic children, NEEDS structure and routine. He doesn't like abrupt changes in plans, although as he gets older that seems to be getting a little better.  But when things don't go as they should- in his mind anyway- it is prime time for massive frustration, irritability and possible meltdowns. The time change   is not just an inconvenient part of life for him. Having extra daylight means absolutely nothing to him. The clock on the wall and his internal clock are now different. While his body (and the Melatonin) are telling him one thing- his dad and I are telling him something different- and it messes him up. 

In years past- the time change has been a source of agitation for the whole family. We have to adjust dinner time, medicine time and try to ensure that the first day of the time change he is resting, relaxing and hopefully prepared the following morning for school.  I can't count how many all nighters we pulled (melatonin and Clonidine would get him to dreamland, but would not keep him there.) He was moody, over tired, and not a joy to be around at all. Our lack of sleep made us just as irritable, and of course that made life just all around miserable for everyone. 

This year, like every other year, we will spend Sunday just relaxing, keeping things quiet and make the adjustments that are needed as unobtrusively as possible. This may help, it may not. Monday is also a delayed start at school, so that may help. 

That doesn't mean that the anxious knot in my belly is getting any better. And all of the worse case scenarios are playing on a loop through my sleepless mind. Not like I don't have enough to keep me awake at night, like the impending IEP, some odd behaviors we have been seeing lately, my work, my school...the list goes on. 

I hope that we have an easy transition like we had 2 years ago, and even last year wasn't the worst. We prepare for WWIII at all holidays, family gatherings, family outings and yes for Daylight Savings Time.  Prepare for the worst, hope for the best- my life's motto. 

I think that maturity plays into all of this, and the older he gets, the better he handles unexpected (or even expected) change. He lives by his calendar, and announces any and all holidays on it. So he is aware of DST, and aware we all lose an hour of sleep. And so far, nothing negative. 

Now if only Mother Nature would cooperate, and stop with this polar vortex and snow crap- then we could truly feel like "springing" into anything. 

Tuesday, February 25, 2014

What day is it? Donna Day!!


It has been 3 years since I read Donna's Cancer Story. In that 3 years I have learned more than I ever want to know about childhood cancer. And by that I mean the things that someone on the outside rarely, if ever, know. The fear, pain, and anger that I can't even fathom. The daily minutiae of caring for a child with cancer. But the one thing that has stuck with me is the HOPE. The hope that Mary Tyler Mom keep alive, despite the fact that she lost her beautiful Donna to the evil that is cancer. Through her pain and sadness, this hope shines through. In her words, in her deeds, and in her daily life. Some days, that light might be dimmer than others, but it doesn't go out. THAT is strength folks. That is amazing.


This time last year, my Teenzilla was preparing to shave her head for the St. Baldrick's Foundation, which began in March, 2000 as the annual reinsurance industry’s St. Patrick’s Day party, held at Jim Brady’s pub in Manhattan. The goal of shaving 17 heads and raising $17,000 turns into 19 bald heads and $104,000 donated to fund the research of the Children’s Oncology Group. 

It was an emotional roller coaster, raising the money (over $1000!) and the event itself.... wow. At the time, Teenzilla was 14, a freshman in high school, and as passionate about what she was about to do as only a teenage girl can be! Mary Tyler Mom and Mary Tyler Son came from Chicago to cheer Teenzilla and her teammates on, and that too was an absolutely amazing gift- getting to meet the woman who's daughter had inspired my girl to shave off her pink hair in Donna's name

When they called her time (3:27) to come to the staging area, I went with her and the captain of our team, Danielle, to get in line. When it was time for me to walk away, I lost it. I started sobbing, hugged them both so tight, not able to put into words how proud I was of them. Not since each of my children made their entrance into the world have I felt so overcome with pride, and emotions. I seriously felt dizzy with all the feels. There are no words to describe it.


When the time came for her to climb into that barber chair, I was shaking, crying and laughing all at the same time. Then came the moment I will never forget.  A man told us that she was amazing, and how he had lost his young daughter in September and how proud HE was of our daughter for what she was doing. Again- the flood of emotions that came over me was literally staggering. I lost my mom to cancer, but I have no idea what it means to move to "Cancerville" as MTM says, and to lose a child. I call myself a warrior mom, dealing with autism, but these parents, and kids are true warriors. 

My baby girl rocked her bald head, and the kids and staff at the school were incredibly supportive. I am still in awe of what she did, such a beautiful, selfless act, it's simply amazing. And what a difference a year makes!                                                      
                                                        Photo: Wow!! In 3 weeks it will be a year since the St. Baldrick's shave!!

It's a year later, the hair is grown back,  and she still talks about her experience, and has said she wants to do it again- after graduation! 

In celebration of Donna Day 2014- I am asking YOU, dear Wino's, to help out. There are many ways for you to be a hero to kids and their families battling cancer. 

1) CLICK this link-Donna's Good Things  It will take you to the Donna's Good Things fundraising page. Donate $5 or $500- EVERY bit helpsSt. Baldrick’s Logo
St. Baldrick’s Logo

Donna's Good Things at Candlelite Chicago Logo                      

3) Buy one of these super cool shirts! I know that many of you share my like for superheroes and all things geektastic- Teenzilla and I both have one of these shirts, and they are very cool, and definitely attract attention- Marvel Super Heroes Save Lives 

4) Go to the St. Baldrick's Foundation website and read about their mission, their accomplishments and the creative ways they are funding research for pediatric cancer. CLICK this link- St Baldrick's

5) Find a shaving event near you and SHAVE YOUR HEAD!!!

Mary Tyler Mom's family has grown, and they adopted Mary Tyler Baby just last year. And even though Donna has been gone longer than she was here, her story and legacy live on in her mom, dad and two brothers.  Life does go on. 

 Remember MTM's mantra- Always, ALWAYS choose hope.  Hope will help you make it through.



Tuesday, December 31, 2013

New Year's Resolutions are for idealistic hipsters....

It's that time of year again. The time when we all tell ourselves (and everyone within earshot) just how dramatically our life is about to change. Of course it is. Of course we do. Just like we did the last twenty New Year’s eves. And how well did all of THOSE turn out? Many of us are fantastic resolution makers. Beyond that, not so good. The making, good. The doing, not so good.

January is the "official" start time for change. A new year, a new you and all that jazz-you know the story. But if you really think about it- shouldn't you be making changes all year long? Why the hell are you waiting till the end of the year or the start of a new year? If your life was screwed up before 12/31, its going to be screwed up going into the new year. "But this year will be different!" you are probably saying or thinking as you read this. I truly wish you the best of luck with that. I know for myself- making a "resolution" is basically setting myself up for failure- because NOBODY holds me to higher standards than me- so when I fail- I fail HARD.

Let's count my resolution failures shall we?

1) Years 2002-2010- Going to lose weight and get into shape and eat better (even joined a gym for 5 of those years- have you seen my fat ass?)

2) Years 2005-2010- Going to quit smoking (quit for 6 months in '06, and again for 4 months in '08. The rest of the year's, maybe quit for a couple of weeks maybe a month)

3) Years 2001- 2010- Going to stop "sweating the small stuff" (OK- I have relaxed a little more over the years)

4) Years 2001-2010- Going to work with my hubby to make and stick to a budget (We try, all year round- getting better, but still not there)

So yeah- the biggest resolutions most people make, are my biggest failures.Damn. It's kind of depressing. I have come to the realization that if you make a resolution you might as well throw a penny in a fountain and make a wish. It’s the same hopeful optimism that drives both activities. No "resolution" will work unless you have formulated a plan- written it down and gave yourself reasonable time to complete it. And I repeat- why didn't you (or I) do this earlier in the year? I have needed to lose weight ALL YEAR. I have needed to quit smoking ALL YEAR. I have needed to save money and take better control of my finances ALL YEAR. The changing of the calendar after drinking, eating and smoking to my heart's content is not magical in itself. If only! Then we would all be thin beautiful, rich non smokers and there would be peace on Earth yadda yadda yadda.

If I am going to try to better myself, I should be doing it year-round. It should be a constant goal, not something marked on a calendar. I know that these things need to start at some point, and what I need to do. I also know that falling on my ass and looking like a total schmuck and then beating myself up over my dismal failure is not a good strategy.

So despite an abysmal track record and a vast wasteland of shattered dreams, we continue to approach every New Year the same way; with the same pointless strategy. Isn't the definition of insanity doing the same thing over and over and expecting a different outcome? So that must mean that a whole bunch of us are off our nut insane because that’s exactly what we do.

2013 hasn't been a horrible year- of course we had our setbacks, but there was a lot of good too. I'm still in school, The Mister is 3 classes away from his Bachelor's Degree (I am a year out- but hey almost there!), I got an amazing job as lead teacher and director of a great preschool, The Boy went away to camp for a week and we both survived, Teenzilla shaved her head for St. Baldrick's, (still blown away by that!) I got to meet Mary Tyler Mom at the shaving event- that was fantastic! I was a very loud advocate for The Boy and spread autism awareness like fairy dust all year, I got to watch a beautiful woman realize the dream of becoming a mom, to TWINS- I Want a Dumpster Baby has been a source of many smiles and happiness for me this year! I am pretty happy with 2013 for the most part, and look forward to a productive 2014.

I won't be making one single solitary resolution though. With the exception of those born on January 1, none of us are actually a full year older on New Year’s day. I challenge challenge everyone today to stop looking at the new year as a means to an end and to start looking at every moment as an opportunity for a new beginning. So eat, drink and be merry ,and just be just realistic, thankful, and hopeful.

Sunday, December 15, 2013

The holiDAZE with Autism

Making him take pictures- not my best idea

The HoliDAZE and Autism... two things that don't often mix well. The rushing, the loud music, the winter clothes, the crowds,  and new foods can all be a sensory NIGHTMARE for the child with Autism. Meltdowns are more likely to happen during this time of year- and with all of the other things going on it is VERY easy as a parent to get overwhelmed ourselves. So here are some things that we have found helps us out this crazy time of year...and being blessed with a child who has High Functioning Autism, we have it easier than some folks. But these tips can be helpful for ANY child and frazzled parent. So here goes...

1)This time of year is filled with meeting new people and the social stresses of being polite, and thanking people for gifts can put a BIG strain on a kiddo on the spectrum. Social stories are AMAZING helpers - but so is a willingness as parents to be understanding, TRY and limit interactions that involve a lot of new people and settings.  Don't do too much on any one day, if possible- limit things to one event a day. And if at all possible- try to entertain at your house- this gives your child a safe environment where expectations are  understood.

2)Schedules tend to change A LOT this time of year. And as I am sure any parent of an autistic child will tell you, schedules and predictability are VITAL in keeping the peace. Try and keep the daily schedule as close to "normal" as possible. Have a chill out time if you can. Try and include (if and when appropriate) your kiddos in the process. Put events on a calendar just for them- then remind them as time gets closer- it helps to take the mystery out of something new- as they can get ready by watching the count down. Each morning, share that day's schedule with the kids, and only that day's schedule. Don't worry about tomorrow or next week.  Again- SOCIAL STORIES!! Can't say enough about them!

3)Sensory issues during the holidays - where to begin? New foods, new textures, new can be a veritable mine field for a autistic child.  Some things that might help are Keep clothes soft and comfortable,( this is particularly hard for me as I am the "Let's get dressed up" mom). Serve a favorite at meals, or have them eat before. This is a cardinal rule in our house- nothing worse than a hungry kid -ANY kid. Don't force hello's and goodbyes- this is a chaotic time with a lot going on- forcing the issue is NOT in anyone's best interest!  Crowded malls bring out the worst in people- imagine not having the ability to filter all of the noise, touching, lights and loud people- you would meltdown too!! Try and shop without then kid - you will BOTH be better off!  

4) Make sure family and friends are well informed about your child's "quirks". What might be mistaken as obnoxious or rude behavior is more than likely just a part of your autistic child's personality. Seeing the world in black and white can be a blessing and a curse. Especially around the holidays when we might be interacting with people that we don't see often, and who may not always be on our top 10 list. Make sure guests are aware that your kid may need a break- and they are walking away without answering because they feel overwhelmed, not because they are being a brat. Or (especially in our house) the kiddo answering a question or engaging in conversation that is COMPLETELY about dinosaurs- just smile and nod- we will take care of it when it seems to be out of control. Remember, they want to be involved too- but if you ask a lot of questions that is usually a sure way to shut them down. Also- processing time is usually longer, so be patient and wait for your answer!  

5)Find ways that your kid can help to make the holidays their own. Baking, decorating, setting the table, helping with Christmas cards- be as creative as you can. This is an amazing tradition builder as well as making Christmas with Autism a good time for all. 

6) And please don't forget about US. As parents to a kiddo on the spectrum, we spend a great deal of our time keeping schedules, trying to make sure  other siblings aren't losing out on things they like as well, school issues, friend issues,  and the holiDAZE are no exception. We don't get to enjoy holiday functions and family gatherings, probably because we are trying to keep the kiddo on an even keel,so most times we just don't get to go at all. We get a little stressed, overwhelmed and lonely too. Stop by with some of those cookies the whole family got together to make- you know- that fun event we decided not to attend because our ASD kiddo is all over the place, meltdown conditions are high, and the time of evening it is at is NOT the best time for him.  Please don't assume that just because he is older, he is "better." Not how it works. For us- early signs of puberty are starting- so now we have a whole new set of challenges. Everybody is dealing with their own challenges with autism and the holiDAZE- just remember- be patient, and be kind. We really appreciate it. 

So whether it is a Merry Christmas, Happy Hanukkah,  Happy Kwanzaa, Blessed Yule or Merry Jar of Dirt for you- I hope some of these will help.   And please- by all means wish me a Happy/Merry/Blessed  whatever- I promise not to be offended.... I will be happy you took a minute to say something nice to me. 

Sunday, November 17, 2013

One pissed off white suburban mom

You know what? I really want to thank U.S. Education Secretary, Arne Duncan, for pointing out that the only reason I am against Common Core is because I am a white suburban mom who has  realized my kids aren't geniuses. WHEW! Thanks for that Mr. Duncan. Here I was thinking that Common Core was a reboot of No Child Left Behind, another one size fits all set of educational standards that failed spectacularly. But clearly, as you so succinctly pointed out- it is ME who is missing the point- what with all my "helicopter mom" antics and happy ignorance of my children's poor education.  I am thrilled that you find it "“fascinating” that some of the opposition to the Common Core State Standards has come from “white suburban moms who — all of a sudden — their child isn’t as brilliant as they thought they were, and their school isn’t quite as good as they thought they were.”  (P.S. what kind of sentence is this? Seriously- YOU are in charge of education?)

(If you haven't read the article- please read it here- I am not exaggerating or joking)

I was apparently completely wrong in thinking that the Common Core State Standards (CCSS) were developmentally inappropriate,  micro-managing attempt to guarantee that teachers will teach to the test and attempt to turn otherwise bright, imaginative students into fact regurgitating drones that are unhappy, frustrated and worst of all- NOT LEARNING. I guess I was wrong about the fact that CCSS is a program that is paid for by billionaires, and "researched" by people who have zero educational background.  And I must have misunderstood that  states have been threatened  to implement this very flawed set of standards or lose federal funds.
And when you said "The Common Core has become a rallying cry for fringe groups that claim it is a scheme for the federal government to usurp state and local control of what students learn. An op-ed in the New York Times called the Common Core “a radical curriculum.” It is neither radical nor a curriculum. … When the critics can’t persuade you that the Common Core is a curriculum, they make even more outlandish claims. They say that the Common Core calls for federal collection of student data. For the record, it doesn’t, we’re not allowed to, and we won’t. And let’s not even get into the really wacky stuff: mind control, robots, and biometric brain mapping"  were you referring to the DOE, February 2013 report that has pictures of the exact biometric devices you are claiming you can't use? I don't know about mind control- but YOUR department put this study out. (See page 44, article 11)  I am really confused now.  This coming from the same man who said that the best thing to happen to the education system in New Orleans was Hurricane Katrina. WHAT THE HELL??

And I must be completely delusional to think that white suburban mom's are the only concerned parents. Apparently no other race or ethnicity or socio-economic group  is worried and angry about CCSS. And dad's well- what do they even care?  Let's not even consider special needs students who will be expected to perform right alongside their peers, regardless of ability. I mean- your goal is "preparing for a global economy" - and apparently these children, the ones with autism, ADHD, dyslexia, etc. etc. etc. do not fit yours and your billionaire backers molds.

My kids may not be geniuses, but they are smart. They are capable of learning- yes, even my son with Autism. I have watched my daughter work her ass off to maintain an A average. She wasn't coddled, she wasn't told she was great no matter what she did. She was, and is held to a higher standard, and her hard work and perseverance and continually good  great report cards are evidence of that. I have watched my son work hard to understand concepts, and have modified curriculum for him, to help his differently functioning brain understand concepts. I do not feel like I was "punched in the gut" by the horribly low standards my kids were being held to. Because they weren't.   But maybe that is just my "delusional" belief.

Mr. Duncan- your rude, racist, sexist remarks are disgusting and have pissed off many, many people. Not just we white suburban moms. . And YOU are in charge of our children's education? It terrifies me to think where my very intelligent children will be when they graduate if this ridiculous set of standards continues to permeate and destroy our schools. Good teachers are leaving their jobs because