Tuesday, October 9, 2012

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.

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!

Teenzilla's fundraising page

Shave your head!

Team Donna's Good Things

Danielle Bare Team Captain

Teenzilla's Mom

Wednesday, October 3, 2012

I'm the favorite parent..nananananana!

See how much they love me! 
I am the favorite parent in my house. I say that with a mixture of pride, ego, wonder and shame. Why am I the favorite? Well duh...because I am MOM of course. I know where everything is, I know what everyone is supposed to be doing, I allow before dinner snacks, I do anything they ask me to do- yes- even if they could/should do it themselves. I am not ashamed of this. I love my kids, and they have plenty of independence- even The Boy is getting better about getting his own stuff done. I ENJOY helping and being MOM. They aren't going to be with me forever, and time passes so fast- I intend on making every minute count.

 I wake them up for school with a "Good Morning Sunshine! and a cuddle. I make them whatever they want for breakfast,(ok- within reason on that one) pick out clothes, pack lunches and backpacks- well-just for The Boy now, Teenzilla pretty much takes care of herself in that regard.   The Boy is allowed to watch TV in the morning before school. I give gentle reminders throughout the morning about getting dressed, eating, teeth and hair brushing. I give the final 5 minute warning before we head out the door. Yes- I drive him to school. The sensory overload the school bus can cause is not worth it. The Mister drives Teenzilla- it works out.

But for some reason- if I am not here, there is meltdowns, crying and upset or pissed off kids. Dad runs the mornings with military precision. "GET DRESSED! EAT BREAKFAST! BRUSH TEETH AND HAIR! THEN YOU CAN WATCH TV!"  He is all about getting it all done as quickly as possible. I am too- I just have a gentler hand about it. The crying and "You're mean" and the constant arguing just doesn't happen...not often anyway.

I can bet money on The Boy losing his shit if I am not home in the morning. Hell- anytime I am not around. He comes home crying from practice 2-3 days of the week, sobbing "Dad is so mean!"  to which The Mister replies- "I was just trying to talk to him". This is true- but The Mister just doesn't read The Boy right sometimes. Generally, after practice- The Boy is in a place where he is focused and easy to talk with. But sometimes, that just isn't the case, and dad just doesn't see it.  It's become almost a joke in our house- I walk in the door and someone is yelling or crying and I immediately ask The Mister- "What did you do now?"

 I admit that lately it is getting worse, and more than a little annoying. Even Teenzilla asked The Boy- "Why do you always throw a fit when mom isn't around?" The Boy of course growls at her or tells her "Leave me alone witch"- THAT is a new one that will not be said again- at least not in my presence anyway.  Then Teenzilla says- "You would never have let ME do that!" Oh...silly little girl! You got away with MURDER when you were a wee lass, and turned out pretty damn good in spite of it.

 I have told The Boy repeatedly- you need to stop crying and throwing a fit with Dad when I am not around. There is no reason for it. I know you are used to the way mom does things- but just because I am not there, and it's just dad does not mean things are THAT much different.  Dad loves you and you need to stop telling him he's mean, or horrid or whatever else you say. It is disrespectful and it is going to start getting consequences.

Then he looks at me with those big eyes and says- "But you're the greatest mom in the world and I love you." Teenzilla rolls her eyes and stomps away at that point. The Mister gets an irritated look on his face and shakes his head. Do I recognize the manipulation? Hell yes I do. But I know that  brutal honesty  is part and parcel of autism- and this is him, just being honest.  The Mister says I allow the kids to lay epic guilt trips on me. Sure I do. What mom DOESN'T?! So I stick my tongue out and say "They love me best- so there!"  

The balance of power is constantly shifting- they will get mad at me and  he will get to be Super Favorite Parent for awhile. And that's just fine.

Monday, October 1, 2012

Inclusion Woes- questions about Autism and Mainstreaming

Go ahead...ask me a question. Any question. Well...almost any question about autism. And don't feel like you need to whisper it, or approach me with kid gloves. I am an open book when it comes to autism. I am more than happy to give you an answer to the best of my ability. 

Today, Autism with a side of fries wrote a GREAT post- Schooling them, Autism style yo!. A conversation with "Cousin D" that started with "WHAT DO YOU SAY TO A PARENT WITH A KID WITH AUTISM?"     What a GREAT QUESTION!  and she went on to give some great things on what NOT to say, as well as what TO say. Go check out the blog already!

I am all about "There are no stupid questions" I mean- that is pretty broad- sure there are some stupid questions out there- I have asked a few myself. But I really try to adhere to the the no stupid questions rule when someone actually has the guts to ask me about autism. 

Recently, I was bitching on my FB page about Inclusion and Mainstreaming and how I felt like The Boy was getting shafted at school.  I had posted:

"From October 29, 2010: Can't believe how awesome it is to see Noah in a "regular" class! Changes to his IEP- he is spending 100% of his time in the third grade class! This is what we have been working toward! We miss Ms. Bennett, Ms. Kelly and Ms. Donna - but this is what they have been getting him ready for- my heart is happy ♥
This was just 2 years ago...now he is spending at least half of his day in special ed. What happened?"

One of the fans of the page asked:  "Why do parents feel the need to fight so hard for inclusion of their special needs kids?"

In an instant, my hackles were up and my fingers were poised over the keyboard ready to type a scathing response. But I stopped myself, and read the question again. This was not posed in an insulting or rude way. This person really wanted to try and understand why I was mad and 
posting about this. Why was it so important to me?

As parents of a special needs child our job seems to be to  continually remind people that he is special, yet needs to live a life just as any child does... without prejudice. Teaching TOLERANCE is the reason for wanting our child to be included. It's a fine line we walk- wanting to make sure people know he has Autism, a special need but wanting him to be treated virtually the same. It's exhausting work- and I have it EASY in comparison to many, many parents. Children with physical disabilities, children with severe cognitive or developmental disabilities- services can be just as hard to obtain for them as well.

One of the comments came from Kristin Kunie:  "I have a 15 year old son with severe Cerebral Palsy... Hes basically a newborn in a 100 lb body. He needs to be taken care of by someone while in school and be in a special needs class. But... It's good for him to be around other kids... He likes being around other kids. He likes to watch them run around and play. He can't do the things that they can and never will. And it's also good for the other kids to be around kids like him. So they know that everyone is different. Hes in a wheelchair and a lot of kids don't see that. Then when they do, they don't understand."

Sarah Hansford  commented: "We would love a school for our autistic son away from mainstream so he can get an education in a stress free environment. He does not have an intellectual disability so he is not eligible for the local special schools. Yet he will struggle in mainstream. He needs to practice social skills at his own pace, not be thrown in the deep end. So there's my dilemma. I'm all for inclusion in mainstream WITH THE RIGHT HELP!!! unfortunately usually this doesn't happen and end result is homeschool." 

What about IDEA?  (Individuals with Disabilities Education Act) What about FAPE? ( free appropriate public education). These things of course are brought up time and time again. Ask any parent who has to have an IEP about the mountains of paperwork they have to sign saying they have been advised of both of these things.  These are the things that parents fight for. These are the things that parents have been advised their children are guaranteed but don't always receive them.  

And yes- A program the school considers “good”may not be adequate for every child, depending on the child’s needs. The bottom line is the child has a right to a free appropriate public education. If they do not learn and make progress in the district’s program, the district did not provide them with FAPE.  But doesn't FAPE extend beyond academic learning? Social skills are vitally important for any child's development and most especially those with special needs. They have to transition into the world someday. Yes, some may never be able to live and function on their own- but some WILL! Inclusion is so very important for these reasons and more.  Yes- there are children who are not able to be in an inclusive setting. Inclusion will not work for them, and may actually be more harmful than helpful. I recognize that, and I also know that MY son does not fall into that category. 

Of course schools are scrambling for money. Of course teachers are not being trained in how to teach kids on the spectrum especially in an inclusive classroom.  Which is a travesty- with numbers at 1 in 80 kids on the spectrum the real issue is WHY AREN'T THEY BEING TRAINED?? No Child Left Behind has pretty much made all teachers responsible for one thing- TEST SCORES. And I am sorry, but identifying academic achievement as the only aim of schooling detracts from the importance of personal, moral and social development.
When inclusion is implemented correctly, it can help a child with autism improve social skills and learn to navigate the neurotypical (NT) world. Unfortunately,  children with autism are placed in a typical classroom with little to no support which can lead to a failure of the inclusion experience.  Or like The Boy- they are stuck in a soecial education class where the biggest part of their "inclusion" is attending "specials" with the general education students. Many children with high functioning autism or Aspergers, who are successfully included academic classes, have no social supports. Many times schools only measure success by grades and place minimal importance on social skill development.
It really comes down to this.  Inclusion is belonging,being with everyone else, and feeling a part of what they're doing. It is acceptance, and knowing that you 'fit in'. You're no different than any of the others. You feel safe, secure, strong there. You can be yourself.  We all want to feel included right? Why should it be any different for our kids? WHY SHOULDN'T WE FIGHT FOR THIS BASIC HUMAN NEED??  

And why should we as parents  be branded as assholes and have people complain that it's not fair for their "normal" child to have a watered down education because of my kid on the spectrum? Oh yeah- I've heard that one. Kids on the spectrum CAN learn. Regardless on where on the spectrum they fall.  They just may learn a little differently. They may take an extra 5 minutes to process information.  They may need sensory breaks. They may need word processors because of handwriting issues. But THEY CAN LEARN!!   

So for all these reasons and more- THIS is why I fight for inclusion. This is why I advocate for my son. This is why I am finishing my degree in Special Ed with a focus on ASD's. I want to be able to help these kids, these families- to find their places, to belong, to be a part of everything. Because one day- these autistic kids are going to be autistic adults. And there is going to be a whole generation of adults foundering in the real world- all thanks to the education system and it's lack of successful, meaningful inclusion practices. THAT is a tragedy. 

This website is wonderful. So many great resources!