Another Reason Why I Don't Do Shit or God Laughs At Me

So you know how when you meet someone for the first time, whether it's a blind date, job interview or whatever someone walks past you and you think," Please God let that not be the person I'm  here to see." Yes well I went to my first therapy (Dear God why the fuck am I admitting this shit? I don't talk about my feelings, sex or body parts. Jesus!!) and as I walked down the hall this elderly and yes she's an elderly lady, who was clearly related to Dr. Ruth, walked past me and I thought, "well I already know God's not in  my fan club. Watch that be my therapist."

Guess who was my therapist????

And I just laughed when I got outside and asked the Sister Mamas,"Did you bitches have me punked? The therapist was like Dr. Ruth's sister!! OMG!!"

OH and just so you know inappropriate laughter does not help your psych eval but it did let me know that I am on my way back to my irreverent, find myself funny self which is who I have really missed. 

Ed's Note: For all those who tweeted, texted, emailed and phoned me to offer their love and support while I lost my shit. Thank you. If you need help ask for it. It gets better.

My Surprise is Two!!

Surprise is the greatest gift life can grant us.

~Boris Pasternak

I wrote about  My Surprise last year.  She still surprises me every day. She is a developmental milestone ass kicker. She is funny and finds herself funny. She is speaking in full sentences. She can tell me if she is mad, sad or happy. And Sweet Baby Girl loves you hard. She is the lovingest squeeziest baby girl ever. She lives up to her Sweet Baby Girl nickname. I would love to go back to the scared shaken moment when I found myself very very unexpectedly pregnant with her and whisper to that woman, "She will bring you so much joy. She is the sister THE DIVA needs desperately." And now My Beautiful Surprise is TWO.

Happy Birthday, Sweet Baby Girl. You are TWO in all it's funny, silly, smart, loving and beautiful glory.

Dear Santa The Remix

Editor's Note: This post originally appeared elsewhere in December 2008. While I now I have a much clearer idea of what Boy Wonder's future holds and the knowledge that the miracle of recovery is just about gone, I do have hope that we can help him reach his full potential. Like every child he does have a lot of potential and its my job to make sure he reaches it.

 

Dear Santa, 

I think you know what I want for Christmas. Yes, world peace, an end to the insanity of terrorism and genocide and a nicely rebounding economy would be nice but really I want the one thing I can't have.

So instead how about a little glimpse of ten years down the line? Just so I know what's going to happen. Good, bad or indifferent I can take it. It's the not knowing that wakes me up at night.

So I know I am most likely on the naughty list but hey I usually do use my evil powers for the greater good. So how about it Santa? Just a five minute peek into the future 10 years down the line. I'll leave you an extra big cookie this year and homemade hot cocoa with a little kick to it.

Love,

Jersey

But what I would write this year......

Dear Santa,

So hey I didn't get my peek all at once when I asked, you revealed it gradually over time just what I can mostly expect. You are a smart man, Santa. When I asked to know how this  whole autism thing was gong to play out, you knew I wasn't ready to know just how hard it was going to be. So how about you just get to work on that hope, love and happiness thing? That's what would work. I'm doing my part but if you could kick just a little Christmas magic my way, I'd be eternally grateful. I'm off to make your cookies. THE DIVA is helping. Don't worry I made her wash her hands.

Love, 

Jersey

Editor's Note #2 I also highly recommend checking out the Weekly Whirl-Our Favorite Holiday Blogs. I'm proud to call several of the bloggers close friends.

Happy Holidays

I wish you all a wonderful Holiday Season. My wish for all is that you find the courage, strength and faith to pursue the things that will make you happy and bring you peace.

Waving the White Flag

It's been building since the 4 year anniversary of Boy Wonder's diagnosis. The demon chases me daily. I tried to outrun it. I tried to excessively clean the house to tame it. I tried disappearing. But it followed me relentlessly. It waited patiently for my defenses to be decimated by the unexpected death of a childhood friend, the sinking realization that Boy Wonder outgrowing his diagnosis is gone and the loss of a support person I'd come to rely on.

I started to cry Friday night and I couldn't stop. Saturday and Sunday brought more of the same. This morning at spin class, I started to cry, got off the bike in the middle of class and texted Big Daddy that I needed help. I needed to go to the emergency room. The wheels had come off the wagon. I waved the white flag.

The ER doctors were not helpful. Someone who is crying, shaking, hasn't slept or eaten in over 3 days and clearly not an addict needs help. Because I wasn't willing to kill myself anytime soon, they sent me off with an appointment with a therapist in two weeks. Not helpful especially when you are not a ask for help kind of girl. So off to the GP, where I got to sit in the waiting room while Big Daddy sheltered me from those staring as I cried on and off for 3 hours.  So for now, I have a contingency plan to get me through the next two weeks. 

I will get better. For myself because I'm a survivor. For my family because they need me. For those who are coming up fast and furious behind me as the rate of autism continues it's astronomical rise. Because I do have faith that the things and people I've lost will turn up again someday.

Thank you to my village for all the love today. You always show me the light at the end of the tunnel.

And D., my ever loving loves me as I am friend, you're my rock.

If you feel like you can't go on or you're alone. You aren't. I promise. Ask for help. I did and I'm glad even if I had to jump through hoops to get it.

And yes the hospital administrator will be getting a letter when I am my old fresh self again.

The Race (The Art of the Reframe)

against windows of opportunity closing.

against a progress report that makes no sense.

with a map that makes no sense because there is no direct route from point A to point B with autism.

against discrimination.

against underestimating Boy Wonder.

against self-doubt and self-blame.

against those who are opposed to children and adults with autism getting the services they need.

OR

to be ready for windows of opportunity.

for real progress.

for a concrete plan of action that will get us from point A to point B.

for acceptance.

for helping Boy Wonder reach his full potential.

for hope and belief in the future.

for advocating endlessly to get children and adults with autism the services they need.

I needed a reframe after a miserable progress report and a miserable trip to Toys R Us trying to figure out what to get Boy Wonder for Christmas.   Some days it all comes together and some days it all falls apart.

A Little Time With My DIVA

 The best thing you can give your children,

next to good habits, 

are good memories.

~Sydney J. Harris

We were off. Just THE DIVA and I to Super Cuzzy's Wedding. You can read about Super Cuzzy here and here.
 A little one on one time for the little girl who struggles with being the middle child.

You want chicken nuggets at 10 am. Well sure.

She was so well behaved on the flight out that people were surprised to see her get off the plane.  She watched TV, colored in her book and told her doll to be good. Not sure if she was reminding herself but I took it. 

Then the next day we were off for a get pretty day with the rest of the bridal party.

Waiting to get her nails done!!!

 The finished product. This poor kid has my feet.

Then we were off for a bit of accessory shopping.  She was so well behaved that she got pretty much everything she asked for.  The other bridesmaids would now like me to take them all on vacation.  I don't think that will go over to well with Big Daddy.

Once we were done shopping, some frozen yogurt was in order.

Stirring it to make a smoothie. 

Then it was time to get ready for the rehearsal  and dinner.  She was well behaved the entire time.   She was her usually silly, girly, never stops talking self but no screaming or carrying on.

Then it was Wedding Day and we were super excited. Time to get her hair done. She could hardly wait.

Oh the hard life of a flower girl.

We are almost ready.

 Me and the BRIDE aka Super Cuzzy.

Then off to the restaurant with Super Cuzzy and Super Cuzzy #2 

THE DIVA stayed behind with her new Partner In Crime aka Aunt J.

We didn't do nuffin faces. 

The World's Most Gorgeous Flower Girl

And during the wedding I was reminded again just what a wonderful person Super Cuzzy is because her favor was awesome.

Instead of favors, they donated to the 

Fisher House Foundation and Autism Speaks.

THE DIVA had a great time. She walked down the aisle nicely. She danced, was taught how to fist pump, ate, ran around like a maniac and laughed like a loon. But at 10 pm she asked to go to sleep.

Wedding 1 THE DIVA 0

The next morning we packed up and headed back to the airport. I hope that she remembers this trip. I hope that she knows while she rarely gets one on one time at home that I always look for a way to make her feel special and loved.  Because she is a special, beautiful, funny, smart, much loved little girl and I need her to know that now and always.

 Future Flight Attendant. 

She takes your safety seriously.

Unexpected Gifts

So today's my birthday. Yes yes thank you. I was going to write about how I am so ready for a change. That it's rarely too late to chase your dreams. To make a change, defy people's expectations of you, how I can't believe how much change has gone on and that I'm registering for college classes for the first time ever next Monday.  But then my friend, A. from over at Try Defying Gravity (Go read her blog) posted this on my Facebook page.

So my unexpected gifts always go back to the incredible friendships that I would have never ever had. It's taught me to really see people. Not what they just might be showing but what's underneath the surface.  I'm grateful for all for my autism mama friends, the ones close to home and the ones spread out across the country. We are a diverse group but we all get one another and appreciate each other's differences. I would choose for our kids to never struggle the way that they do but I am so proud, grateful and blessed to call each and everyone of you my friend. 

Ed. Note: A. would like you to know that she really doesn't want to hit me but she would however like to smell my eyeballs.  Hey to each their own.

Happy Revisited

Ed. Note. This post originally appeared elsewhere back in January 2009. I am re-posting it as a reminder that while I may struggle and I have struggled more then usual lately, that Boy Wonder is happy 98% of the time. This is way more then can be said of most of us. His happiness is all the matters. My selfish expectations do not matter as much as his happiness.

Autism Autism Autism Autism Autism Autism Autism Autism

That awful word that beats in my head all day long from the moment I wake up till I go to sleep, if I sleep at all. It's always here sometimes louder then others, sometimes barely a whisper but always with me.

I am never distracted by other things enough to ever forget it. Autism. While I'm watching a movie. Autism. While I am in a meeting at work. Autism. While I am out with friends for a drink. Some days, it fills me with despair. Other days, it fills me with a rage that scares me.

It affects every aspect of my life. It has changed me in a way, that divorce, death of a family member and other hard knocks have never been able to change me.

It has shaken me every day over and over for the past year. The well meaning things people say make me want to scream some days. He'll be okay. He'll come out of it. Oh really, may I see your crystal ball?

But just when I am at my most wretched and worst, Boy Wonder will give me a gift. He looked at me this morning with a huge smile on his face and said "Happy!!! I HAPPY!"

Yes, you are my most darling little boy! That's what I need to remember that in spite of Autism you are a happy boy!

The Elevator

You go to the hospital or maybe the adoption agency and you go up up up in the elevator. Several hours or days later you come down and they let you leave with this brand new little person and you yourself are a different person. You aren't just you anymore but Mommy. You  think,"What the Hell? They're letting me leave? I don't know what I'm doing." There's no instruction manual. But you figure it out and you make good choices and bad choices. The good choices you keep. The bad choices are easily fixed. You adjust.

And then a few years later, you go to a different hospital.  You go up up up in the elevator. You fill out forms asking all sorts of questions about your baby's development. Your perfect precious baby. You go into see the doctor. Your perfect precious baby is so profoundly disabled that the doctor doesn't even need to finish the test. You go down down down in the elevator. You aren't just Mommy anymore but a Special Needs Mommy. You were just brutally hazed in to the club.

And again, you think," What the Hell? They're letting me leave? I don't know what the fuck I'm doing." There's no instruction manual. Now you doubt all your choices. Any decision is agony.  You worry about making bad choices because now you know the bad choice could make it so he's never independent. Or the choice between a group home or an institution when he's older. Or whether he'll speak or never speak. Or interact or rock in the corner. Or be sweet and loving or aggressive and violent. He can't tell you if he's cold, hurt, sick or if someone did something unspeakable.

And you ride the elevator every day. Some days it goes up and some days it goes down. You just hope you're getting off on the right floor.

You'll Make It Ok

4 years ago today, at 2 years 1 month and 5 days old, Boy Wonder was diagnosed with autism. When we left for the doctor's office that day, we weren't expecting to hear those words. It was the first time I ever felt real fear and sorrow. I remember crying hysterically and the doctor telling Big Daddy," She needs to get herself under control before she hurts herself and the baby she's carrying."   These are the things I wish I knew the first year.

• The first year sucks but you'll find Jess, Judith, Jeneil, Pixie and Tanya. They get you through it.
• Some people disappear. Some come back but many do not. You make new friends though.
• D. sticks by you. She gets Boy Wonder. She remembers this day every year and makes sure to call you.  
• That there's always room in the rabbit hole for just one more and there's always a hand to pull you out.
• Big Daddy goes to every meeting concerning Boy Wonder. EVERY MEETING. You never face the firing squad alone.
• When the doctor said BW would never talk, HE WAS WRONG.
• When he said he would never show love, HE WAS WRONG. 
• When he said he'd never initiate play, HE WAS WRONG. 
• The baby, you're carrying, THE DIVA, she's fine.
• And the Surprise, Sweet Baby Girl who comes along just 22 months after THE DIVA, she's fine, too.
• You'll finish a marathon in Boy Wonder's honor and his buddies from across town and across the country.
• You find the village. The sister mamas. The ones who tell you and who you tell when things go awry, you'll make it ok.

But what I really wish I knew on that awful day was that in the end, I'm strong enough to make it ok for my Boy Wonder, and his sisters. I may have to ask for help along the way but I will make it ok because there is no other choice. 

My Hero

   View from the Verrazano Bridge

I ran for my hero yesterday. I ran when I wanted to quit because I never let him quit. I ran because I had such a cheering section going for me on Twitter that I couldn't let them down. I ran on because Luau was waiting to run me in at mile 23 when he'd already finished hours ahead of me.

At mile 18 I hit the wall. I started saying the names on my jersey over and over again in my head to keep myself going. I had to walk the better part of the next 3 miles. I then saw a shirt that said, "Honey Badger Takes What She Wants" and I took it as  sign from the village to get my butt moving. I ran on because My Gurl was waiting at mile 26.

I ran on because Super Cuzzy drove up from DC to support me and take care of my kids.

I ran on for all 3 of my little darlings and Big Daddy who haven't seen much of Mommy on Sundays in months.

and for my best friend D. who loves me and supports me no matter what mess I get myself into on a regular basis. 

But my biggest reason for never quitting was my hero, Boy Wonder. He is my inspiration for doing all that I do every day. Him and his sisters.

Thank you again to everyone that supported me yesterday. You were all with me at the finish line. I swear. Look here's your medal.

Finish

I ran my last 4 miles this morning until the 26.2 mile run on Sunday. I was asked last night if I really planned on finishing last night. The answer to that question is YES. I will finish because I'm running for:

• The mamas who gave up their careers when the diagnosis hit.
• The mamas who had to work harder at their careers to provide for their child(ren) with autism.
• The mamas who would never speak up and now roar like lions when someone messes with their child.
• The siblings who get so much less of our time and attention because of autism.
• The naysayers who tell us all the things our kid will never do and yet our kids prove them wrong.
• The ones who believe our kids can do most things if given the opportunity and tools.
• My friends in the rabbit hole. (Stop hogging the tequila.)
• For the Daddy that dyed his hair blue.
• For those who are mad at God.
• For those whose faith in God carries them through the tough times.
• For those who send their solider off to war and fight the battle at home alone.
• For those who have paved the way in getting laws passed to provide for our kids. (Thank you Judith!)

But I am running mostly for hope. For my own hope for the future and for my fellow mamas hopes for the future.
I do know that I am never alone and I also know that autism is no longer an invisible disability.

To all my family and friends and friends I consider family, thank you for your support and for believing in me and my son. I love each and everyone of you.  See you at the finish line.

Initiate Play

initiate - to cause or facilitate the beginning of: set going

play - a recreational activity especially: the spontaneous activity of children

Mommy Mommy I want to play Ring Around the Rosie, Ashles Ashles (DIVA speak, not a typo) we all fall down is the DIVA's new favorite game. She wants to play with everyone. No one is spared a turn. Not even Boy Wonder. 

In 3 days, she taught him how to play Ring Around the Rosie. He laughs and holds hands and turns in a circle. He loves it. He loves it so much that when the DIVA decided she was done playing the other day, he walked up to Big Daddy and said, "I want to play, please."

Late by 4 years, he has hit his developmental milestone of initiating play. Better late then never.

Uninspired/Inspired

Words of encouragement give lift to a heavy heart

I've been forcing myself out the door to run lately. I've been hitting the snooze button. Shaving off a mile here or there. I've been uninspired to run and I've run angry and fearful. That is not the kind of running that I love to do.  I had forgotten why I started training for this marathon in the first place.

But then on Saturday, I was off to visit the village.  I got off to a late start because of a scary incident with Boy Wonder and finally was off to get my guuurll, C. and drive off Thelma and Louise style. (Sorry Brad Pitt does not make an appearance.) And on the Merritt Parkway, I lost it, at 80 mph, because once in a while the enormity of what has become my life can still sneak up and overwhelm me when I least expect it.  And C. keeps her cool and talks me off the ledge because she gets what I'm saying and more importantly, what I'm not saying.

C. and I arrive and everyone else begins to show up too. There's hugs and so good to see yous before we all settle in to chat, laugh, cry, coin new catchphrases (that's a celery flower, bitch), cheer each other up and umm maybe there was some singing. And but most importantly we talk about our kids triumphs and what they're doing and I'm reminded again who I'm running for because it's not about me. And my friends tell they are proud of me for running for our kids and for me it' so small compared to what they've done for me. 

And this morning, I ran inspired on happy feet. Inspired by women, who snort, honk, cluck and moo and who just get it.  And who sent me on my way Sunday morning with a remembrance of what friendship and a giant metal chicken can do.

My Guuuurrrrlllllll

It's the friends you can call up at 4 a.m. that matter.

~Marlene Dietrich

This time last year I hadn't even met her. No clue she existed. We'd both been invited to an autism mama gathering. The host let us know we'd both be on the same train and introduced us. We exchanged a  few lots of hilarious texts. I got on the train in Newark Penn. She was waiting in New York Penn. She keeps telling me I'm going to miss the train. I say I'm on the train. She gets on the train and we act like silly teenagers. Comparing notes and stories. Laughing like lunatics.

My phone rings. It's Big Daddy. He says,"Sweet Baby Girl ate rock salt." I say,"Um yeah?" She says,"Why is he calling you? Tell him to call Poison Control." He hangs up and calls back a few minutes later. Poison Control said no big deal.

Big Daddy then made a fatal mistake which sealed her and I together forever.  Big Daddy says, "I tasted it. It was really salty." Me,"You tasted what?" Him,"the rock salt." Me," You tasted the rock salt!!!! WTF!! Why?" C says,"Your husband ate rock salt!!! WTF!!!" Cue hysterical laughter. 

C., you are a smart, amazing, funny, beautiful, talented, loving and compassionate person. I'll be the Ethel to your Lucy anytime. Aunt Jersey to your kids and a thorn in your husband's side.  I've got tarp, a shovel and a chicken. I've got your back like you've had mine. 

And Dude, MY HUSBAND EATS ROCK SALT!!!

Pushing On

Editor's note: This was originally published elsewhere in April of 2010. 

I'm reposting it here for my mamas who are just getting back into a healthy lifestyle. I'm proud of you. 

*Inspired in part by Luau. Go see him!

4:07 a.m. Alarm

4:15 a.m. the whir of the elliptical trainer begins and the angry rock music starts blaring from the iPod.

5 minutes in the sweating starts and the demons start to loosen their death grip.

10 minutes in faster I go. Hopelessness just lost his grip.

15 minutes in the sweat starts to pour as I turn up the resistance and raise the incline. Rage falls away.

2o minutes in breathing hard letting go as Sadness gets crunched in the fly wheel.

25 to 5o minutes in the zone. No thoughts other then pushing on and through the fire as my legs burn.

50 to 55 minutes I begin to slow down as  the sky begins to lighten and I hear one or another of my little tribe of hooligans begin to stir.

Why you ask? For my sanity and health so I can be here for them because who will care for Boy Wonder when I’m gone? I need to be here as long as possible. So I can walk the walk of a Special Needs Mommy. So I can breathe deeply and calmly when chaos seems to rule the day. To set an example for my girls that a strong woman is a beautiful thing and that weak and helpless isn’t cute. So I push on each and every day for myself but mostly for them.

Six

It.....

happened.....

 in....

 the......

 blink.....

of.....

 an....

eye!!!!!

Six!!!!

Happy 6th Birthday to our Amazing Boy Wonder!

We Love You!!

Mommy, Daddy, THE DIVA and Sweet Baby Girl

Why Mommy?

The DIVA asks............


Mommy, why does he yell AAAHHHHHHHHHHHH?

Mommy, why won't he use his words?

Mommy, why does he bite his hand?

Mommy, why does he cry so hard?

Mommy, why does he rip up your books?

Mommy, why does he run in circles?

Mommy, why won't he play with me?

Mommy, why is he scared of the worm on the Wonder Pets?

Mommy, why won't he keep his clothes on?

Boy Wonder has Autism, DIVA. He can't help it. He's trying really hard.

Mommy, why does he have that?

I don't know, DIVA. He just does. 

Mommy, why don't you make him better?

I'm trying, DIVA. 

The Four Hardest Words

It's not the load that breaks you down,

it's the way you carry it. 

~Lena Horne

I sit and watch THE DIVA figure things out. She wants to do everything herself. She gets mad if she can't figure it out. She gets mad if she can't something to do exactly what she wants. She gets fiercely mad. (I wonder where she gets that from?? Shut up) And she is so proud of herself when it all works out to her DIVA satisfaction.  But the one thing she, 9 times out of 10, will refuse to say is, "Can you help me?"

I know exactly whom she gets that lovely trait from. I'm a do it myself girl. I hate hate asking for help. Relying on other people? No thanks. 

Oh but the Boy Wonder has taught me, I must ask for help. I can not do this alone. It has gotten easier not quite 4 years in to ask for help for him. 

And now almost 4 years in, I am learning to ask for help for me. From the Mamas. From a few other very special people.

If you're just starting out on this road, ask for help. Take help that's offered. If not for you, do it for your kids. In watching THE DIVA struggle and refusing to ask for help, I've learned I need to ask so she can learn to ask for help.

Recipes

Recipe for Guilt

1 cup of comparison

1/2 cup of looking back

1 cup of self judgement

2 tablespoons of regret

 

Stir, wallow, self-pity

Best if kept to yourself.

Recipe for Hope

1 cup of appreciating uniqueness 

1/2 cup of looking forward

1 cup of compassion

2 tablespoons of joy

 

Stir, celebrate, enjoy.

Best if shared with the village.

 

Ed. Note. Blogger is messing with the fonts. I have no idea why they don't match. 

I Never Run Alone

Incidentally x 2

Children have to be educated, 

but they have also to be left to educate themselves.  

~Abbé Dimnet,

Art of Thinking, 1928

Ahhh one of the first things you learn when you have a child with autism is that they don't just pick things up. The professionals call it incidental learning. We don't see much of incident learningl from Boy Wonder.  However, every once in a while he likes to shock us with just how much he observes.

Recently, I was refereeing the girlies and his pizza was done. He heard the beep, went in kitchen, got the potholder, put the potholder on his hand and came out into the living room and said, " I want pizza!!!" Alone, no instruction, no prompt, NO NOTHING. Completely and utterly independently. 

Then, Friday night, we took the 3 kids to Target since THE DIVA'S epic love of all things Disney has yet killed another blu-ray player. Boy Wonder does not get to go to Target often.  As Boy Wonder and I stood on line, he kept letting go of the cart and going to look at the crack soda cooler. I kept telling him, "No soda. Hands on the cart, please." I finish paying and I hear this crinkling noise. I look and he's smacking a bag of chips on the conveyor belt. I apologize to the woman behind me  for the chip smashing. She says,"Oh he put those on the belt."  I started to laugh. He is standing there all smiles saying, "Chips please". Usually he would hand me the bag and say, "Open chips" but he put them on the belt. You can't tell me he didn't know we had to pay for them. I know he knew. 

So maybe he doesn't "incidentally" learn as fast as most kids but he does learn and so does Mommy. Even in Target.

Back and Forth

Ed Note: This was originally posted elsewhere back in July 2010. I had a request to put it out here on our new home. I've only updated the picture.

I can’t.

I can.

He’ll always need care and supervision.

He’ll outgrow his diagnosis.

I knows what’s best.

I have no clue.

We’ll have a conversation.

We won’t have a conversation.

I’ll know what he’s feeling.

I’ll never know what he’s feeling.

I’m not cut out for this life.

I’m his mother for a reason and I will do it.

His sisters will resent him.

His sisters will protect him.

People will reject him.

People will accept him.

A lifetime sentence.

The gift of a lifetime.

Girl's Night In Or Beware Dirty Dirty Dander Cat or It's Not All Autism All the Time

So D, the BFF, invites me and two other chickies over on Saturday night. I always forget about Dirty Dirty Dander Cat, hereafter known as DDDC. I show up around 7:30. So we are chatting (discussing kids), laughing (mocking husbands) giggling, (mocking each other) and my eye starts to itch. Me thinking its my contact goes in the bathroom and fools around with it. I then remember DDDC. Idiot me is sitting on the couch that DDDC loves to lounge on. We are all now umm tipsy and laughing at me. M. and C. decide it's time for pretty pretty picture time, which how  I wound up with this picture.

So I decide to go home and scare the crap out of Big Daddy because hey I think it's funny and I know it will be gone by morning. So he's all like "EEEWWWW WTF?? Did you get in a fight?" and I'm like, "yes we had jello wrestling and I got an elbow to the eye! NOT the DDDC got me!"  Except my eye isn't any better so off to the ER. In which, once I'm assured I don't have a scratched cornea, I start laughing and texting D., C., and M. that I'm in the ER and that DDDC is going to get the chicken.  Meanwhile I'm sure the good doctor is thinking of calling for a psych eval and I'm thinking if I go all Britney on him it'll be like a vacation!!!

But he didn't so I went home and sent this to D., C. and M. and especially DDDC just so they'd know I meant business.

My eye is fine. Eyedrops and glasses for a few days and good as new. So umm if you don't want me to come over D. can rent you, DDDC for a nominal fee. 

A Rant About F.A.P.E.

I'm different; not less.

Temple Grandin

F.A.P.E. - Free and Appropriate Public Education
- is an educational right of children with disabilities that is guaranteed

by the Rehabilitation Act of 1973 

and the Individuals with Disabilities Education Act.

I'd like to remind the school districts that it is your responsibility to educate our children with disabilities. They are entitled to an education under FEDERAL LAW. We, as the parents of children with special needs, realize that the cost to raise and educate our children is extraordinary.  But you never ever hear me say, "Cut the extra curricular activities for the typical children. My kid can't participate. Too bad. What do I care about your kid?"

But we as, special needs parents, hear this refrain constantly. Some school districts point us out. They put the bulls-eye on our backs and  are creating an us vs. them mentality. It's unnecessary. All I want for Boy Wonder and his peers is an appropriate education.  I and the other parents want to watch our kids grow, learn and succeed, just like any other parent.  Just as I want for my two darling neuro-typical girls who will participate in extra-curricular activities that Boy Wonder can not currently participate in.

Our kids are a vital part of the community. They teach compassion and empathy by just their very existence.  They have a lot to offer the world, if they are educated properly and given opportunities to succeed. I can only quote Temple Grandin,"Different not LESS!!!""

So listen up School Districts of America, do not MAKE ME GET THE CHICKEN. We are only asking for what our kids are entitled to both our special needs kids and the typical kids. A free and appropriate public education.

.

Hopes

Hope arouses,

as nothing else arouses,

a passion for the possible.

~William Sloan Coffin

My hopes for the following school year in no particular order. 

 For Boy Wonder to express what he's feeling.

A smooth transition.

A year of teamwork.

An IEP followed to the letter and in spirit.

Progress in small ways and big ways.

Open honest communication. 

Less bullshit cause I'm tired of bullshit.

Educators who want my Boy Wonder to succeed in life.

A bus that shows up on time.

A friend for Boy Wonder. (I'd say friends but I don't want to be greedy.)

Here comes kindergarten. Not the kindergarten I imagined but still it's kindergarten.

Shoes

If it ain't broke, don't fix it.

Anonymous

On the day Boy Wonder was diagnosed, the doctor said alot of things in his accented voice. Most of it rushed past me. I couldn't even comprehend that this man had told me my baby had autism. He gave no hope. Said,"there's no cure." He made a few suggestions. He said based on the way BW was walking he should have shoes with high tops and orthopedic inserts. He told us to go to a shoe store near the hospital that specialized in these kinds of shoes. My first thought was, " Oh good, I can fix something for my boy." 30 minutes after he was diagnosed we walked into the shoe store and bought him boots with inserts.

We recently took Boy Wonder to an orthopedist at the suggestion of his new neurologist.  It was recommended that again we go with high top shoes and orthopedic inserts. So we went and bought new shoes with inserts. Can't hurt. Might help.

 If tomorrow I could take away all his struggles I so would. I'd give anything for Boy Wonder to break out of his autism. But here's the thing, he doesn't need to be fixed. He is who is he. I want things for him. To be happy, to have a purpose in life, to have friends but he does not need to be fixed. He needs to make his own progress.

And I figured that out while wearing these. 

 "The perfect shoes can change your life."

Cinderella

Or at least your perspective.

 

Uncharted

I'm going down,
Follow if you want, I won't just hang around,
Like you'll show me where to go,
I'm already out of foolproof ideas, so don't ask me how
To get started, it's all uncharted...

Uncharted 

Sara Bareilles

What to expect from the upcoming school year? I have no idea but I do know it will be what we make it for the two of them.  Two of them?? Yes THE DIVA is going to preschool.

The I ain't nothing but trouble grins.

Cut it out Mom. I'm a cool kindergartner now. Jeesh! 

 But I'll still be home to entertain Mommy!!!

Come on September 7th!! We are ready!! (I think)