Family Adventures and how Autism ruins them

You know, most of the time I try and be positive, even upbeat about living the autism life. But sometimes even my incessant cheeriness is dulled by how our lives are dictated by crap that autism throws at us.  And those days are the days I say AUTISM SUCKS and I don't care who doesn't like it.

I did not say "The Boy sucks" and I never ever would. But this weekend the fact that autism and the anxiety it creates abruptly cut an  impromptu family adventure very short frustrates me.

The Mister surprised us on Saturday and said- get to the car- we are going on an adventure! This is unusual for him to begin with, so we all did as he said. Everyone piled in the car laughing, excited to get out of the house.

Look how happy we all are!

An hour car ride filled with singing, laughter and playing the alphabet game, everything was fine and dandy. We decided to stop at Cabela's- just for the hell of it. Things continued on, light, fun, and silly with The Boy amazed at all the displays- and then all of a sudden I saw the signs-  the anxious look in The Boy's eyes, the jerky body movements, the heavy breathing- here comes the meltdown.  Time to go, and go get something to eat I tell The Mister.  Teenzilla rolled her eyes and mumbled something under her breath which I chose to ignore.

Blown away at Cabela's

We got back to the car and talked about what else we were going to do. The Boy asked if we were going to go home now. I said- well- we were kind of planning on some more adventuring after getting some lunch. The panic really set in at that point and he cried- "I JUST WANT TO GO HOME!"  Ok, ok- let's get some food.

Over lunch we talked about taking a trip to Ikea, or just aimlessly driving somewhere and stopping when we saw something cool. As I watched The Boy barely touch his chicken nuggets, I knew our adventure was done for the day.

Teenzilla was pissed. Pissed at her brother, pissed at me, and refusing to be consoled. That finally made me snap at her, and tell her I have to miss out on things all the time, she just needs to get over it. Of course, I immediately regretted this- as tears welled up in her eyes, and she yelled back "I AM ALWAYS DISAPPOINTED! HE always ruins everything!"  *sigh* Yet another family outing derailed by Autism. Teenzilla taking a back seat again to her brothers sensory needs and anxiety issues. I know it sucks. I hate it too.

As soon as we got home, I told her we were getting pizza and she should ask her BFF to come over to hang out.   She shrugged and went to her room. The Boy visibly relaxed as soon as we pulled in the driveway. The panicked look in his eyes, the tension in his whole body, it all went away. I knew we made the right decision- even if it was at the expense of the rest of the family having fun. I was frustrated and a little irritated too. Well- a lot irritated. I have to keep telling myself  "It's NOT his fault, it's NOT his fault." This wasn't a case of a child being a brat- this was sensory issues and autistic behaviors in overdrive. And despite his (and our) efforts, today just wasn't a day he could overcome them

Siblings get screwed sometimes when dealing with an autistic brother or sister.  Either they feel an overwhelming sense of responsibility, or they feel resentful, jealous and anger. I follow all the advice. I make time just for her. We do lunch and shopping dates, I let her friends all hang out here, we do movie nights- anything to make it all about HER, since so much of our world does revolve around The Boy. From what we watch on TV, what we eat for dinner, and where we get to go-  it can be difficult to balance.  And The Boy is high functioning, I can't imagine how much more tricky it becomes when you have a child that has moderate to severe autism that requires 150% of your time and attention, PLUS any other children that need that attention too. I feel bad even complaining.   But sometimes you just have to let it out, right? Tomorrow is another day.  Just keep swimming.

My loves ♥

The one where my daughter shaves her head

My brave, awesome girl!

March 16, 2013 will forever be one of the most amazing days of my life. That was the day that my 14 year old daughter shaved her head for St. Baldrick's Pediatric Cancer research.  If you don't already know the story behind this amazing thing she did- you can read it here, Would YOU shave your head for a great cause?

How many teenage girls would do such an amazing thing? I mean- 14 years old, a freshman in high school, at a time in her life when girls are usually obsessed with their looks, wanting to fit in, and dealing with the hell that can be high school?  Frankly, I am still kind of surprised she went through with it. But she did, and now I am in absolute awe.

This is really something to be proud of, for everyone involved. Everyone should be proud of the very brave folks who got into those   barber chairs and then allowed strangers to shave their heads completely bald with hundreds of people looking on.  This is a HUGE thing to do, from the men who may not have a lot of hair (I also saw a lot of beards getting shaved off!), to the young kids who aren't as concerned with what they look like yet. But most  especially for the women and girls who shave their heads.  It is a powerful statement to make to the children currently battling cancer, and have no say in losing their hair. and to those who love them.
It was an exciting day full of emotions for everyone. Our team, Donna's Good Things Michigan raised almost $4000, and Teenzilla raised $1150 of that.  The event, St. Baldrick's of Romeo MI raised over $230,000 this year, and has raised  raised over $760,000 in just six years of hosting events for St. Baldrick's.  This year there were 520 shavees....520!!!   It was a literal assembly line of people shaving their heads.  It was HUGE!

The story behind the pink spots on her head: Mary Tyler Mom had made a comment when we first began this journey, and my Teenzilla had hot pink hair, that "Donna would have been enchanted with her pink hair" Since that pink was long gone- Teenzilla was ADAMANT that we do a quick dye job before shave day. I di my best to keep the dye of her scalp, but failed in spectacular fashion!   Between baking soda and peroxide, she has gotten most of them off now! But it has been a HUGE source of questions. So now you know! 

Meeting Mary Tyler Mom 

Teenzilla was amazing through it all. She brought a friend with her- which was so great- I think that really helped keep her calm and they danced to the music playing, and checked out the cute boys. ) And when Mary Tyler Mom  showed up- wow! Teenzilla was so excited to meet her, the mom of the beautiful Donna who was her inspiration to do this, and when I found her and said "She's here!" , Teenzilla's face lit up like Christmas and she rushed to go and meet her.  After a big hug, MTM presented her with a "Swag Bag" and the most heartfelt thank you I have ever heard.



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 next huge 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.

Teenzilla goes back to school tomorrow- and she is nervous. Even though a lot of people knew she was doing this- it will still be a shock to see her beautiful bald head.  I will be nervous for her, and have already told her if she needs me to come get her- I will be there in a hot minute.  But, I don't see that happening. This kid of mine is one of the strongest people I know.  When I asked her how she felt about what she did she replied, "Pretty damn awesome, mom".  I think she  is going to be just fine.

Love this look!

Gorgeous!!!

Holy crap! My daughter is shaving her head!

You know a year ago, when my Teenzilla said she was going to shave her head for St. Baldrick's, raise money for pediatric cancer research, and in memory of Donna Hornick, I indulged her. As parents we all do this, our kiddos say they are going to do something BIG, or something CRAZY and we smile and humor them, knowing that the fancies of kids, especially teenagers are fleeting.

Now we are 5 days away from the shave event, and she has not wavered once. At least not out loud, or in front of me. Her conviction is strong, her ideals are overwhelming, and her passion is that which only teenage girls have.

But, until the other night, when talking to my dearest childhood friend, I had not thought about how I felt about it. Other than knowing without a doubt that I could never do it, I have only really felt fierce pride in my girl. But now it's stuck in my head, all the feelings that I have not even thought about. My baby girl is going to be BALD.  BALD. A part of me cringes at the thought of my very pretty daughter not having hair- I mean, isn't hair one of the ways how we females define ourselves. If we have a bad hair day, it really puts a damper on the rest of our day. If we get a bad cut or color, it really upsets us. Unfortunately, we live in a society that bases everything on how we look. If we are overweight we must be a slob. If we choose not to wear makeup we must be a hippie. If we do something out of the ordinary to our hair (like when Teenzilla went shocking pink) there are stares and judgmental asshats to contend with.  And being a teenager?? In high school?  Fuggedaboutit.

I have been told "I can't believe you are LETTING her shave her head. she is going to be teased so badly"  Letting her?? No- this is HER decision. This is not some whim of a fickle teen girl- this is for an amazing cause, something bigger than she is. It takes guts and heart to do what she is going to do. It's amazing, it's life changing, and not only am I "letting" her do it, I am her loudest supporter! But there is the part of me that is scared for her, and worries about any teasing or bullshit she will have to endure. She is a strong kid, a good kid, but I don't know if she has, or if she is even able to really process what going bald means. Aside from the amazing sense of doing something awesome that is.  I don't pull any punches- I have told her repeatedly, people are going to stare. People will make comments, and not all of them will be nice. She says "Bring it on". I hope that attitude stays intact- she's gonna need it. I am very nervous about the reactions, and most of all, how my girl will handle it. It's gonna be hard. Oh- and did I mention she is also in the schools Spring production of Cinderella?  Yeah- she is going to be in the spotlight- shiny bald head and all. Well- she will wear a wig...but still!

I have caught myself reminiscing about her hair when she was little, long, curly and beautiful. She cut it off in first grade for Locks of Love, and I cried. Not in front of her, and I cried not only because she cut off all her hair, but because even at the tender age of 6, she had a big heart. And....she wanted to have a haircut like Dora the Explorer! I have always been the mom who encourages trying different things, from wardrobe to hair. Especially hair, after all, it does grow back. And I can't say I have loved every hair decision she has made, but I raised her this way- and she is her own person- and a damn good one at that. I get compliments all the time, what a great kid I have, and what a great mom I am, having raised such a great kid. And I will take credit for raising her to be the way she is, but she deserves the lion's share- she is not a little girl, she is a beautiful, funny, smart young woman who made this choice all on her own.


Today, I had a comment on my FB page- and I just have to share:

A year ago Jan, I had to shave all my hair off for a brain surgery. My hair was to my boohiney, I braided it, cut those 5 thick, long braids off & donated them as well...as the clippers inched their way over my scalp, I felt a new me emerge! At first it felt like my identity was being stripped from my grasps, I felt naked, vulnerable & honestly, a little lost! I think it was harder on my best friends than it was for me! Then a saying came to mind as tears were streaming down my face "If you don't like something...Change it...if you can't change it...Change the way you think about it!" That's what I did, changed how I thought about it! I began to think of the process of the wigs being made, the ladies that would receive them (I had THICK, long hair so def made at least 2 wigs! ), how it would effect their lives forever & suddenly I had peace! Sure people stared at me where ever I went, women (most of them!) were THE worst & the men were surprisingly wonderful! I received A LOT of compliments & support! Im not sure why Teenzilla is shaving her hair, sounds like its just for donating it & that is plain AMAZING!! I want to thank you, as her parents, for raising such an AMAZING daughter!! Thank you! As I would tell myself, its just hair & it grows back! It did in fact change me, it strips you down to your core & thankfully I had been working on myself in order to become my best self before having to be naked, vulnerable & bald in front of the world, I was taught to be comfortable with WHO I am not the identity of my long, thick hair! Bald ROCKS!! Rock it out Teenzilla!! I will be bald agn soon, another brain surgery, you what tho! I GOT THIS & BRING IT ON!! P. S. she will be really cold, a friend made me the best beanie ever & it became my favorite accessory! Go beanie shopping before or make one with one of those knitting looms (WalMart $13) and she can pick her color of yarn! Rock it out Momma & Teenzilla! YOU got this & BRING IT ON! Much Love! -Nicole Johnson

While she is not donating her hair, the money she has raised, that all goes back to St. Baldrick's and the solidarity for those who don't have the choice to go bald or not- it's mind boggling to me. 

And once again, I have to thank the indomitable Mary Tyler Mom for sharing her beautiful Donna's story with us.  The sad reality that is childhood cancer, and the lives taken much too soon has a face, a name, a story, and is not just another sad statistic for us.  It's amazing how one family's story changed our perception in such a huge way.

Please check out the links here, about St. Baldrick's, about Teenzilla  and share!

St. Baldrick's
I'm shaving my head!
Rylee's Donation Page
Michigan's Team Donna's Good Things

Would you shave your head for a great cause?

My girl!

What would you be willing to do to make money and a statement for a great cause? Would you be willing to shave your head? I know I wouldn't. But my Teenzilla is. My heart is so full and proud- I really can't describe it.

Last year we started reading Donna's Cancer Story.Sheila Quirke, AKA Mary Tyler Mom, wrote a heartbreaking serial blog about her beautiful daughter Donna, and her 31 months of treatment. I have never read anything more gut wrenching than this. I sobbed. I raged. I shared this beautiful girl and her beautiful family with everyone.

Donna

Teenzilla read Donna's story too- and like me she cried and said "Fuck Cancer. What bullshit. It's not fair."
Said with all the conviction and vehemence only a teenager can muster.

 Through Mary Tyler Mom, I learned of the St. Baldrick's Foundation. "On March 17, 2000, reinsurance executives John Bender, Tim Kenny and Enda McDonnell turned their industry's St. Patrick's Day party into a head-shaving event to benefit kids with cancer. Their 20 "shavee" recruits planned to raise "$17,000 on the 17th." Instead, they raised over $104,000!  Now this has turned into the world’s largest volunteer-driven fundraising program for childhood cancer research  and today the St. Baldrick's Foundation funds more in childhood cancer research grants than any organization except the U.S. government."

I watched as several of my friends made their way to Chicago last year, and prepared to shave their heads. I donated and cheered them on. I followed their blogs and their Facebook pages. And I shared all of this with Teenzilla.  She looked at me after seeing all the pictures of the newly bald, and said, "I want to do that".

I chuckled, and I said, yeah, right. She looked me straight in the eye and said- "I am serious mom. So many kids have to go through chemo and lose their hair and they don't have a choice. I want to do this. It's just hair. It will grow back."

I told her that I would support her 100% if she wanted to do this, but secretly I thought she would never do it. The next event was a year away- that was a lot of time to think about it. And being a fickle teen girl- I expected her to forget about it, and then change her mind.

Then a few days ago, my friend Danielle from Life With Penis People, who had talked about starting a team last year,  asked if Teenzilla was still interested- because she was starting a team here in Michigan. I asked Teenzilla and she said "Oh heck yeah I am interested!"   I asked "Are you sure?" And she said "Absolutely positive mom"

So we are starting the fundraising. The big day is March 16, 2013. Teenzilla's fundraising goal (a'la me) is $1000. She is a little worried about raising that much. I told her- "You are young, beautiful and an amazing kid. People will donate and you will raise $1000 and make a difference. and then you will be bald and I get to rub your head!"

Our captain, Danielle! Thank you for starting our team!

I am beyond proud of her. This is HER idea. I am so amazed by her. She is mature beyond her years and has the all consuming passion that is unique to young people.

And in 5 months she will be shaving her head in honor of all the kids going though the hell of chemo.

 Damn. I am in absolute awe.





Please consider donating to this wonderful cause. St. Baldrick's is  just an amazing organization. Following are links to Teenzilla's fundraising page, and our Team, Donna's Good Things. If you are in Michigan, consider joining us- as a shavee or a volunteer! Look for St. Baldrick's events in your town too!
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Teenzilla's fundraising page

Shave your head!

Team Donna's Good Things

Danielle Bare Team Captain

Teenzilla's Mom

Back to School- the 2011 Edition

This is it! The first day of school for the 2011-2012 year. I bought the kiddos new clothes- new backpacks and shiny new pencils and sent them off to learn this morning. Why is it then- after taking the day off even- that I am in the dumps? Could it be because  I missed their entire summer WORKING?? Could it be the weather is cold and grey outside? Could it be that I am tired and out of my thyroid medication? Most like a mixture of all of them.

Always posing

The boy started his first day as a 4th grader in a mainstream classroom in a new school. Close to home, with a wonderful teacher and what is hopefully a VERY helpful and supportive IEP team.  I am so very excited about this year.

Teenzilla started 8th grade. The last year she will be a "Big Dog"  until Senior Year.  She bounced out of the house this morning looking adorable as usual with a "Love you Mom" over her shoulder as she headed out.

Beautiful girl!

The Mister went with me to the Boy's new school to make sure he got to the right classroom and to talk to the teacher a little as well. He settled right in and began doing the seek a word puzzle she had out for all the kids. Right away I saw 2 kids he already knows in his class...that was very nice. The teacher (who Teenzilla had in 4th grade!)  asked us a few questions and then the school psychologist popped in as well.

I left feeling both relieved and anxious at the same time. I am so happy I took the day off work. But now- as I sit here- I am thinking I like it a little TOO much. The thought of going to work 45 minutes away tomorrow and not being instantly ready to help if needed is making me very nervous.  VERY nervous and a little bitchy.
I am sure he will be just fine- but I WANT to be closer. I WANT to be home. I WANTITWANTITWANTIT!!!! (cue temper tantrum here)

Not to mention Teenzilla and her anxiousness over advanced math this year, Not that I could be much help with that- but I could make her laugh and fix her a snack until Dad got home to help.

So- I am starting a fund-if you would like to contribute to my "Stay at Home Mommy Fund" please contact me for details. $1.00 here, $5.00 there..all donations are accepted and appreciated.  Thank you for your help!

The care and feeding of a 12 year old girl

Have you ever tried to really figure out the mind, thoughts or emotions of a tweenage girl? DON'T!!  Trying to decipher my 12 year old has me banging my head on the wall..literally. She is a moody, snippy emotional wreck most of the time. 

The rest of the time she is a funny, smart, talented girl who is a pleasure to be around..unfortunately that side is losing it's majority vote.  While she is not "officially" a teenager yet- she has been on the path since toddler hood. I knew from a very early age that my beautiful princeASS was going to be a headstrong, opinionated, confident ,young lady. Don't get me wrong. These are all good traits to have- but they come with a downside...a whining, eye rolling, foot stomping, door slamming downside.

Since beginning middle school my daughter has changed so rapidly- she grew 3 inches, got boobs, started her period and discovered boys.  Yes-boys. The hormones are strong with this one, and I am considering locking her in a cage or making her wear a chastity belt, or strapping her budding chest down with an ace bandage- any other ideas are welcome.

We are currently dealing with her first crush/heartbreak. She started liking this boy at the end of 6th grade. It was cute, awww..baby girl likes a boy. Harmless right? This young man was very polite and cute too. Unfortunately he is also dealing with some issues of his own, things I can't really understand and I know that my daughter- despite her mature facade- is incapable of dealing with. So her father and I said that it was to be a friends only relationship- telling her she was too young, etc. etc.  Summer went by- she was busy- I didn't hear anymore- that was the end of it right?

Recently I have heard some disturbing things from other friends and other friends moms. They are apparently a "couple" and she is head over heels for this boy. Something I was completely blown away by when it came to my attention. I stalk her Facebook and her phone and have seen no signs...what did I miss and when? I asked her about it- and my normally chatty daughter clammed up and claimed that they were friends and nothing else. I reiterated my rules- no dating, no boyfriends at 12 years old. We will revisit the topic later on down the road. 

Then came the first boy/girl birthday/movie party. This also caught me off guard as she never told me that boys were invited as well- one of them being THE boy. I spoke with the mom and they were going to be chaperoning so I let her go.  And again- I hear the very disturbing "She REALLY likes this boy" *sigh* Now I have to bring the hammer down and it's not going to be pretty.

So-  I sat her down to talk. I told her I didn't appreciate being lied to, and this was unacceptable and she is NOT allowed to have a boyfriend, she is only 12 years old and if I had to be a hard ass then I would.
Cue sobbing. Cue yelling  "You don't understand!"  Enter more lying as she tries to tell me he is just a friend. Not fooled little girl- those tears are not for a "friend"  Then there is me- pulling out the angry mom voice- telling her in no uncertain terms that this is to cease and desist immediately or there will be some very serious consequences.  Exit sobbing daughter- stomping up the stairs slamming bedroom door and cranking music up.  Dad looking completely shell shocked and me feeling like I was just run over by a truck.

This will certainly not be the last time we deal with such things but it has completely thrown me. After a couple of days of monosyllabic grunts and extra moodiness she is perking up again. The control freak in me is going crazy because while I can control what is going on at home, on the computer and phone and outings- I can't do that at school. So now I have to trust her not to lie to me- and that is hard. She's a kid, this is her first "love" I remember what that was like- it was wonderful, awful, amazing and terrifying.  I am watching her grow up- and let me tell you there is nothing more  frustrating  and scary  than being witness to your baby girl turning into a woman. But the transformation is not complete. She is still a little girl, whether she likes it or not and I intend on keeping it that way for as long as I possibly can.