The Adventures of Boy Wonder

And Yet More Proof That God Loves Messing With Me

2012-02-26T18:11:00.000-04:00

So I took THE DIVA to Princess Tea Birthday Party yesterday. I got to sit and watch her play withe classmates and learn how to drink tea with her pinky out. The mom had her younger sister and her friend helping out doing hair, makeup, nails and how to act like a princess lessons. THE DIVA kept cracking up the sister's friend. She came over to tell me how much she enjoyed THE DIVA. We chatted a bit. She tells me she is a part time nanny and babysits as well. She also tells me she is an aide at Boy Wonder's school. I'm thinking ooo babysitter as our current babysitter is pregnant and we will need a back up. I ask her if she knows Boy Wonder. Her face lights up and she says oh he's so sweet and such a cutie. Then she says oh you probably know my mom!!! I ask who her mom is. Guess who?? THE SPECIAL ED DIRECTOR.

And there you have it reason 8,679 why God loves to mess with me.

Paying It Forward with 13.1 and 26.2

2012-02-17T11:43:00.016-04:00

And as I finished up training for the NYC Marathon last year, I said never again. I ran it for all the right reasons and with tons of support but it was long long months of training and hours spent doing long runs on Sundays but the excitement in the runner's village was contagious. So I thought to myself well just maybe I'll do it again next year but then I hit mile 18. Mile 18 was my breaking point. I was tired with 6.1 miles to go but I checked my twitter feed and holy freaking cheering section. And of course I had the famous Luau waiting for me at around mile 23. So I ran on because letting my hero down is never ever an option and I always finish what I start.

So I finished and I was sore for a few days. I started to think well why not run it again? But I put it on the back burner while I started school and had a few other things going on. But then I got inspired by MrsSgm who decided she'd kick a little Congressional butt I mean brief them on military families living with autism and then go on a national TV show and ya know tell the nation what's going on. And my friend who is starting a non profit tennis academy for kids with autsim. Or always Judith who fights for healthcare reform nationwide for her son, my son and everyone else's sons and daughters living with autism. Or Jess who speaks out with eloquence and class for our community on a daily basis. And all the other mamas who have done so much for all our kids.

I have been blessed by the people who have been on the road ahead of me. They have blazed the trail through a scary forest. They have reached back, grabbed my hand and pulled me forward. They have welcomed me into the village. Now it's my turn, I can reach back and pull someone forward. I can tell them you'll get there. Maybe not in the most direct route, there will be twists and turns and uphill battles and oh watch out for the rabbit hole. But you are never ever alone.

So in honor of these amazing people and their sons and their daughters, I decided to really get my crazy on and because ya know Luau likes as many of us to participate in his crazy as he can convince to join him, I'll be running the Boston Half Marathon (click >HERE< to donate) on September 16 and then the NYC Marathon (click >HERE< to donate) on November 4 for Autism Speaks. If you are in a position to donate please do so and if not you can just cheer me on on Twitter.

You can make a difference in this community but only you can figure out how to do it in a way that matters to you the most. This is my way of giving back. What's yours?

Unexcepted Blessing or My cousin is the next Dionne Warwick Physic Friend

2012-01-27T09:26:00.000-04:00

Editors note: This originally appeared elsewhere for THE DIVA's 1st Birthday. As I watch her rapidly approach her 4th (how did that happen) Birthday, I remembered this post. It's one of my favorites. Because as much as she is being all sass and brass tacks lately, she is really and truly a blessing.

Late in July 2007, my cousin U. came to visit me. I was in probably the best shape of my life. Boy Wonder had yet to be diagnosed but I knew something either wasn't right or I was a really shitty mother as he didn't seem to like me. While U. and her daughter K. were here, I came close to fainting a few times. U. said to me,"Maybe you're pregnant!" I said, "Maybe I'll slap you."

I tell Big Daddy what U. said and we laugh until I start counting. So I take a pregnancy test and get this.....

Unexpectedly pregnant!!! Oh shit! I was thrown for a loop but quickly accepted it which led to this.......

On the first day of Spring March 20, 2008, my water broke in Target at 9:30 am which then led to this at 11:21 pm later that evening....

Which brings us to one year later, Happy 1st Birthday, Diva! Mommy and Daddy love you more then we can ever say!

What It's Like To Have A Child With Autism

2012-01-26T10:38:00.000-04:00

Editor's Note: This post originally appeared elsewhere in March 2010. While our sleep issues have mostly subsided, the Tasmanian Devil is a rare sight these days, and Boy Wonder is far more present, a lot of this is still true. ~J

Some days it's like having a ghost in the room. You can see them but you can't touch them. They can't hear you.

Other days, it's like someone dropped off a Tasmanian devil. A whirling, stimming, running, jumping yelling dervish who leaves a path of destruction in their wake.

Every day, a constant worry about their future and selfishly your future cause you sure as hell didn't sign on for this shit. Some days the worry is manageable and on the bad days it's paralyzing.

Wondering if something happens to you who will care for and love your child because you know there are very few if any people willing to do it.

Watching the news and wondering what you'll do if your child ever gets so violent your life and that of your other children could be at risk and praying it never gets to that point or become the mother who is so overcome she overdoses her child on medication and kills him.

Cringing when you hear other parents complain about the budget for special education kids in your school district and kind of wishing you were still that ignorant but knowing you are a better person now.

1:00 am wake up calls followed by another at 2:30 am and 5:00 am because God forbid we sleep through the night.

You get to have some one come to your house 6 days a week to give your child therapy.

But there's progress, love and hope. Progress because you never let up on him EVER. Love because he's your child no matter how God made him and when he looks you right in the eye and smiles it's all worth it. Hope that all this hard work will pay off in a miracle.

Oh Wait This Blog Is Suppose To Be About Boy Wonder or Pay Attention Mommy

2012-01-19T11:17:00.000-04:00

Boy I've been a whiny mess lately. Jesus. Time to pull up the boot straps. Ok here is what Boy Wonder has been up to lately. Ready?

Ok big one first, he is starting to take himself to the bathroom at home to umm pee unprompted. Yes!!!! He toilet trained himself for um "Code Brown", as Judith and Jeneil call it, years ago.

No matter what he asks for he always says please at the end unlike THE DIVA and Sweet Baby Girl who just say NOW!!!

He is mastering out of programs at school weekly and he is showing an interest in reading. This is huge but ya'll get that right??

The hand biting has almost completely disappeared and his hand has healed.

He is learning to ride a bike and he loves it.

He is trying new foods unprompted. He ate Big Daddy's egg salad. I'm not personally a fan but hey he tried something new that wasn't candy or chips.

He has his first loose tooth and he is tolerating it well.

He is initiating playing ring around the rosie and tag with the girlies more and more.

There's plenty more but these the big and small things that have brought me a lot of joy and hope over the last few weeks.

#yearoftheoxygenmask or I Ran Away For The Weekend

2012-01-17T15:19:00.000-04:00

Because I can't take care of the 3 maniacs if I can't take care of myself.
Because the last 6 months nearly broke me.
Because the years are short but the days are long especially when you are a special needs mama.
Because I have things going on that are difficult that I can't share just yet.
Because I could, I ran away for the weekend and sat by the pool with my lovely wonderful friend.
I needed it. I feel like I can draw a deep breath and I'm ready for whatever 2012 is going to throw my way.
2012 is the Year Of The Oxygen Mask Project. Do something for you. I did and it feels really really good.

Ed. Note: To learn more about the Oxygen Mask Project, please click here. You can also follow the Oxygen Mask Project on Twitter @OxygenMaskProj. You can also visit their Facebook page at The Oxygen Mask Project.

Time for A Change

2012-01-09T13:41:00.001-04:00

It takes strength to survive;

It takes courage to live.

Strength and Courage

~David L. Griffith

The winds of change are blowing wild and free.

Make You Feel My Love

~Bob Dylan

4 years ago, Boy Wonder was diagnosed. All we've done is survive since then. There's been ups and downs. There's been joy and sorrow. There's been 2 steps forward and 1 step back but we've been in crisis mode. We can't stay here anymore. I can't stay in crisis mode anymore. I also can't be Mommy or Autism Mama all the time anymore.

I will never be the blissfully ignorant, happy go lucky person I was once upon a time. The past 4 years have taught me too much about judgments, incorrect perceptions, empathy, acceptance, patience and love. We aren't who we were pre-diagnosis.

So I'm choosing to make changes. I start college this month. I'm looking to go back to work. I'm practicing forgiveness of myself and others. I'm thinking seriously about what would make me happy no matter what other people may think.

It's time to stop surviving in the land of what could've been and time to accept what is and go after what would make all of us happy. Everyone deserves happiness. I just have to let go.

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

2011-12-30T21:11:00.000-04:00

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!!

2011-12-26T08:45:00.000-04:00

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

2011-12-23T09:52:00.002-04:00

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

2011-12-21T09:04:00.000-04:00

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

2011-12-19T19:35:00.000-04:00

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)

2011-12-12T10:13:00.000-04:00

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

2011-12-05T10:52:00.001-04:00

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

2011-11-21T09:49:00.000-04:00

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

2011-11-16T10:22:00.000-04:00

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

2011-11-15T11:42:00.000-04:00

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

2011-11-09T12:12:00.001-04:00

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

2011-11-07T14:37:00.001-04:00

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

2011-11-03T13:33:00.000-04:00

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

2011-10-26T16:20:00.001-04:00

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

2011-10-18T13:43:00.000-04:00

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

2011-10-14T08:32:00.000-04:00

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

2011-10-08T21:09:00.000-04:00

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

2011-10-04T06:00:00.002-04:00

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?

2011-10-01T22:13:00.000-04:00

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

2011-09-27T09:22:00.000-04:00

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

2011-09-23T10:11:00.000-04:00

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

2011-09-21T16:42:00.000-04:00

Incidentally x 2

2011-09-20T22:52:00.000-04:00

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

2011-09-14T12:34:00.000-04:00

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

2011-09-13T14:44:00.000-04:00

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.

2011-09-09T14:03:00.001-04:00

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

2011-09-06T21:54:00.001-04:00

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

2011-09-01T14:24:00.000-04:00

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

2011-08-31T13:03:00.000-04:00

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)

The Two Best Things That Ever Happened to Boy Wonder

2011-08-12T14:39:00.001-04:00

We are not only our brother's keeper;

in countless large and small ways,

we are our brother's maker.

~Bonaro Overstreet

They are the two best things that have ever happened to Boy Wonder. They pull him out when he hides. Aggravate him just enough to keep life interesting. Engage him in silly play. To them, just for now, before they are old enough to realize he's different, he is just their brother and playmate. And I do hope that they realize that he is the best thing that ever happened to them. They will learn things from him they can not and would not learn any other way.

Which Way?

2011-08-08T22:00:00.001-04:00

Where do we go from here?

This isn't where we intended to be.

~You Must Love Me~

Who do we ask when we don't know which way to go?

The Map!!!!

~Dora the Explorer~

Do you keep waiting for it to get easier? I do. I keep thinking tomorrow, next week, next month it will all get easier. In the rare quiet moments, I mourn the things I've never done with Boy Wonder. At not quite 6, there are so many things I thought about when I heard, "it's a boy" that we would do. By now, he would have been participating in a sport. We are still watching Little Einsteins and Dora instead of Phineas and Ferb and Sponge Bob. I've never had an eye roll or an Ugh Mom don't kiss me. This would have been the summer he learned to ride without training wheels. But the training wheels are on the bicycle for this whole ride.

I work through it most days but lately it's been a tough haul. We made the decision to try medication. We are sitting here on pins and needles. Watching Boy Wonder intently for effectiveness and possible side effects. Hoping that the vocal stimming and hand biting will calm down, that it will give him the focus he lacks.

So where do we go from here? One foot in front of the other. No looking back just forward towards hopefully what will be an easier time.

In The Moment

2011-07-15T09:05:00.000-04:00

Rejoice in the things that are present;

all else is beyond thee.

Montaigne

Take your eyes off what you lost.

Daniel @blindpoet

I often feel as if I have been absent from Boy Wonder's toddler years and preschool years. He's my oldest child yet he's the one I've spent the least amount of time with since his birth. I went back to work when he was 10 months old. At 17 months, he entered Early Intervention and I found myself unexpectedly pregnant with THE DIVA. At 2 years, 1 month and 5 days he was diagnosed as having severe autism and we threw him headlong in to therapies, day in and day out. At 3 years old, he boarded the school bus for the first time, came home got off the school bus and I had a therapist here waiting for him. Right after the THE DIVA'S 1st birthday, I found myself unexpectedly pregnant with Sweet Baby Girl. (Yes I see the pattern here. No it will not be happening again.)

So since Boy Wonder's been 17 months old, he's been in therapy and I've been popping out babies like tic-tacs. The little girlies are always here and always making their presence known. I feel as if I don't often to get to just be his Mommy. I'm always his advocate, therapist, coordinator, etc. but just Mommy doesn't happen often.

Yesterday, when the bus dropped him off, THE DIVA was off at camp and Sweet Baby Girl was napping. Boy Wonder wandered over to the front steps and sat down. Instead of rushing him inside like I normally would, I sat down next to him. He put his head on my shoulder and smiled. And I sat and just enjoyed the feeling of his still small body pressed up against me and just enjoyed being his Mommy.

Love: Autism Style

2011-07-12T09:05:00.000-04:00

Jess over at A Diary of a Mom wrote a beautiful post about Brooke showing Katie empathy. Yes go read it. I'll wait.

Back? Ok good. So I remember the doctor saying the Boy Wonder would never really connect with people or show love and affection. I have found that statement to be untrue. I have a cousin who from here on out shall be referred to as SuperCuzzy. Boy Wonder loves her. LOVES HER. They have a special connection. He cries when she leaves. She is an AHHHHHHMMAAZZZINNNGG person. She worked as a respite worker for a family with several kids on the spectrum during college. When she visits, there's no explanations and no judgements. She just sees, helps, gets it. So when she walked in the door Friday afternoon, she was immediately jumped on and loved by Boy Wonder.

So he'll never show love and affection? Yeah sure whatever. Tell that to SuperCuzzy. She'll tell you different.

Oh Jim Perdue, Part Deux

2011-07-11T10:56:00.000-04:00

Hi Jim,

How's your summer? Any vacation plans? So I thought I'd give you an update about Boy Wonder and his chicken eating adventures. Especially as the girls in your customer relations department were super and sent me some awesome coupons.

Well, we tried and tried every product you offered and BW turned his nose up at all of them. We finally had our Speech Pathologist, the wondrous K start a feeding therapy program with him. He would eat chicken for her but not for us. Until one day when Big Daddy accidentally overcooked this chicken.

And then Boy Wonder proceeded to stuff his face with chicken.

So Jim, it looks like we can continue our relationship. I'm off to Shop-rite to stock up.

Fondly,

J
COO of Boy Wonder, Inc.

A Fairy Tale For My Friends

2011-07-07T09:33:00.000-04:00

"I'm never going to survive this summer"

A message sent to a select group of friends on Facebook yesterday

Which began a discussion of true yet hilarious scenarios which inspired this post.

There once was a woman who had several children. But yet.... Her house was neat. Her clothes were immaculate. Her makeup and hair sublime. She got to eat meals while they were hot. Her coffee was cold only if she ordered it iced. She got to use the bathroom alone. She also got to shower daily.

Her husband was a big help and he cleaned and cooked and noticed things left on the stairs and took them up on his way. He even folded laundry and put it away.

Her children never fought or whined. They didn't do spit art on the windows or draw on her walls. They slept THE WHOLE NIGHT THROUGH!! They ate their meals quietly and nicely.

And then she heard screaming on the baby monitor and woke up.

The End

WHAAAAAATTT???? I told you it was a Fairy Tale. And yes Big Daddy does help around here so no smart remarks when you get home honey. mmmmKay?

Michael Phelps Who?

2011-07-05T08:12:00.000-04:00

Summer Olympics 2020? Anything is possible.

Visible or The Double Edged Sword

2011-06-21T11:50:00.001-04:00

As Boy Wonder grows older his Autism grows more visible. No longer is it invisible to people who don't know what Autism is. As my firstborn, there's so many firsts that I haven't experienced with him. He has made more progress then I was told by that doctor he would ever make.

I often only see BW in relation to the DIVA and Sweet Baby Girl so while I notice the differences, it's my normal. Between school and his therapies we don't often get to do things with large groups of kids his own age. But yesterday was BW's preschool picnic. This included the inclusive preschool as well as the preschool with disabilities class. As they had all of the kids line up in the front of the room, my heart sank. I knew what was coming. The music therapist started to play his guitar and all the typical kids and some of BW's classmates started to sing. Not my Boy Wonder though. He cried and stimmed and bit his hand. And the thrill of his joyful progress just two weeks ago evaporated.

I know next year when I go to the preschool picnic for the DIVA, I'll get my typical moment. But I also know, I'll see all the kids from BW's former class and I'll remember yesterday. The double edged sword of raising typical kids and a special needs kid.

Joyful Progress in Pictures

2011-06-07T15:11:00.000-04:00

True progress quietly and persistently moves along without notice.

~St. Frances De Sales

Without struggle, there can be no progress.

~Frederick Douglas

We attended D's little girls 3rd Birthday Party on Saturday. (Happy Birthday A!!!) Now usually Boy Wonder just hangs by the chips and wanders about not really interacting with the other kids but then this happened spontaneously and unprompted. Ready????

Spontaneous unprompted appropriate play with other kids. He looked at them and laughed along. Thanks for the wake up call Boy Wonder. Mommy's watching.

Painful Progress

2011-06-03T09:25:00.000-04:00

In this world, there is a kind of painful progress.

Longing for what we've left behind, and dreaming ahead."
— Tony Kushner

We had Boy Wonder's Annual IEP review. His placement has changed from Preschool with a Disability to Autism. He will be in a self contained classroom next year for "Kindergarteners and First Graders."

While I'm glad he has made enough progress to move ahead, the lack of development grows all the more apparent. Sweet Baby Girl is surpassing him weekly. The DIVA is a runaway freight train so far down the track ahead of him. I know it does me no good to compare my kids. It's not a luxury I often allow myself. But for a few minutes I'll wallow in it. I thought we'd be farther along by now but we aren't.

The school year is almost over. BW will be attending Extended School Year. But I'm dreading the fall already. Why? Our town hands out lawn signs for all the kids starting Kindergarten. It says "School # 2 welcomes you to Kindergarten." This is not a Kindergarten I ever imagined.

But I'm not alone. Alot of us are feeling this way after IEP season. It's disappointment and heartbreak for now but the hope and joy will come back around.

Oh Jim Perdue

2011-05-10T11:46:00.001-04:00

Dear Mr. Perdue,

May I call you Jim? I feel like we're close like that since my son has eaten your Perdue Baked Chicken Breast Tenderloins for lunch and dinner. It's the only protein he gets some days.

You see, Jim, Boy Wonder has Autism. He is a very selective eater. Your chicken tenderloins made it past his extensive screening process. So imagine my dismay, when I have been unable to find them in the 4 local food stores that I ~~stalk~~ look for your product in. I'm a resourceful kind of girl so I went and checked your website and found the product is no longer listed there.

Well Jim, Boy Wonder hasn't eaten any chicken in 3 days. I tried your other products and he will have nothing to do with them. I am currently contemplating cheating on you. I may have to go to Whole Paycheck and buy the only other brand I know he will eat.

But ya know what Jim? Life's tough enough for us. I'm sure I'm not the only Autism Mama who has a kid who would only eat those chicken tenderloins. Could you please please bring them back? Please? I've attached a picture below just so you know exactly which product Boy Wonder enjoys.

I hope we can continue our relationship, Jim.

Thanks,

J
Boy Wonder's Mom

For My Kids on Mother's Day

2011-05-08T10:39:00.000-04:00

Editor's Note: I wrote this post last Mother's Day. It's still relevant. I've only updated the pictures.

For the one who is proving the doctors wrong.

For the one who makes me laugh till I have tears streaming down my face.

For the one who was a total utter surprise but is a joyous smiley baby.

For making me a better person because really you have shown me what matters.

For teaching me what love is really all about.

For the smiles, giggles and utter silliness.

For sleepy hugs.

For I love yous.

For a reason to get up in the morning.

For showing me what real determination is to each of you.

For the everyday gift of being your Mommy.

I love each and everyone one of you for exactly who you are at this very moment.

Happy Mother’s Day!

I Will NOT

2011-05-06T10:19:00.000-04:00

let you limit his future.

let you fail to help him realize his full potential.

let you warehouse him till he ages out.

ever stop fighting for him.

ever stop loving him.

stop fighting for his right to be himself.

I won't stop ever EVER.

Well I won't back down
No I won't back down
You can stand me up at the gates of hell
But I won't back down No I'll stand my ground, won't be turned around
And I'll keep this world from draggin me down
gonna stand my ground
... and I won't back down

Tom Petty and the Heartbreakers

Swinging To His Own Beat

2011-05-02T10:54:00.000-04:00

I took this picture yesterday afternoon as my kids enjoyed their new swingset after weeks of rain and mud. They are all laughing and having a grand time.

When my girls are older, I want them to look at this picture and celebrate their brother's differences. He may not always go in the direction we want him to go in but he gets where he needs to be in his own sweet time.

And wouldn't the world be a boring boring place if we were all exactly the same?

Umm Beyonce??? The DIVA is after your job.

2011-04-21T07:58:00.000-04:00

The Deep End of the Pool

2011-04-17T08:02:00.000-04:00

Do you know my fabulous friend Jess over at A Diary of a Mom? Please go read this post of hers before you proceed. I'll wait. Cue Jeopardy Music.

Done? Ok good. Let's get started then.

We swim in the deep end of the autism pool. Maybe not the deepest murkiest part but we are in pretty deep. Yes Boy Wonder is not very verbal. His social skills and play skills fairly non existent. He struggles to express his most basic wants and needs while we struggle to understand him.

But our struggles are just that. OUR struggles not your struggles. While your struggles are in the shallower end pool, they are no less challenging just different.

I've never once wished that Boy Wonder was less autistic, had HFA or Asperger's. I've wished he didn't have autism at all. I wish no parent ever had to hear,"Your child has autism."

I empathize with your struggles and I celebrate your child's victories. But never once have I thought that your child has it easier then mine. I just think their challenges are different.

I don't want more company down in the deep end of the pool. It's crowded enough down here.

Four Words For World Autism Awareness Day 2011

2011-04-01T06:26:00.003-04:00

It's funny how four little words can change your life. Will you marry me? I want a divorce. You have a son. Your son has autism. I've had all of those things said to me. The last two are the only ones that really changed me. The very last one changed me irrevocably.

Four words that change your perception of what you thought the future would hold forever. Gone forever the blissful ignorance of those kinds of things happen to other people and never ever to you. You become more aware of other kids development.

You learn acronyms, like PRISE, IEP, IDEA, and ABLLS. You learn about DAN Doctors, Bio Med, Floortime, ABA, VBA, ST, OT and PT. You try the GFCF diet.

You are forever changed. Drastically and radically changed. You stop staying the "R" word. You judge others less. You find compassion and tolerance. Your patience and empathy grows.

You find out who will step up and be a real friend. You find out who will step away. You'll make new friends who are on the same path.

But I can say this with utter certainty, you now have a choice. You can choose to be bitter over what you think you've lost or you pick yourself and move forward. Your child standing in front of you. S/He needs you to dig deep and be more adult then you ever have been in your life.

I promise progress will come sometimes painstakingly slowly and sometimes surprisingly quickly.

Now I have four words for you. You CAN do it. And that's a promise.

When the Words Won't Come

2011-03-29T13:30:00.000-04:00

I think I am understanding lately how Boy Wonder may feel. I have so much to say but I can't say it. I keep getting in my own way. Post ideas listed everywhere. Half written posts in my head but when I sit down to write nothing comes. I feel blocked and jittery.

Is it because of what's going on with the school district? This waiting game of who pays for what if anything? The Boy's placement for next year has me on edge and jumping out of my skin. Snappish and no patience for little girls whining.

I could tell you that I'm running faster but it's fueled by fear and anger. That the forced rest days built into the schedule I'm tempted to ignore because physical pain dulls the fear and anger.

Sleep is elusive for me and Boy Wonder. He's been getting up at 3 am.

I could tell you that I feel that there's been no meaningful progress for Boy Wonder for months and that it makes me angry. Angry because I thought we'd be farther along by now. Or I try to remember that he seems happy and that's what matters most.

I could tell you that Sweet Baby Girl is developing beautifully and typically. She is my happiest, sweetest, most smiley baby. At 15 months, she has a few words and is into everything.

Or that the Diva is living up to her name. In all her 3 year old glory, she thinks that screaming in my face will change a no to a yes. Or that potty training is optional. But she is so smart and can be so sweet. Lots of questions and I can do it myself. Or that I find her fashion sense outrageously wonderful.

I could tell you other things but I'm searching for my words just like my Boy Wonder.

A Diva Promise or All Lies

2011-03-26T07:03:00.000-04:00

You Say Tomato I Say Tomatoe

2011-03-25T08:25:00.000-04:00

“Individually, we are one drop. Together, we are an ocean.”

Ryunosuke Satoro

Strict ABA Program

Floortime

Gluten Free Caesein Free

Special Carborhydrate Diet

Whatever he/she will eat today Diet

DAN Doctor

No DAN Doctor

Biomedical Intervention

Lucky if they take a multivitamin intervention

A known genetic cause

Vaccine injured

Genetic factors with environmental triggers

No clue why my baby has it

Team Curebie

Team Neurodiversity

Praying for a miracle

Praying to get through the day

Just diagnosed

Years since diagnosis

Our children are part of the fastest growing diagnosis in the world. They have autism. Yet we fight amongst ourselves. We judge each other's choices. We call names. We are steadfast in our beliefs that our way is best. We preach acceptance yet don't practice acceptance.

But what would happen if we all banded together? If we worked together, despite our differences? We all have one common goal. We want happy healthy children who grow in to valued productive members of society. Who will be happy and safe long after we are gone. I don't know how we can possibly get our children where we want them to be if we can't band together now.

Don't you think it's time we all worked together?

1 in 110 DO COUNT!

2011-03-23T08:20:00.000-04:00

I recently receive my April issue of Parents Magazine. As I flipped through the magazine, I noticed that despite April being Autism Awareness Month there was not one article on Autism. I was shocked and dismayed. Not even on article on the early warning signs of Autism? Are these people for real?

I wrote about it on Facebook. I liked Parents Magazines fan page and called them out on it. I received a condescending reply. I got the other Autism Mamas on board. We've received no real response.

We will be canceling our subscription.

Parents Magazine just so you know our children with Autism in all of it various forms are deserving of so much more then your dismissive attitude. Maybe next year you'll do a better job. Hope springs eternal.

Three??? What????

2011-03-20T07:30:00.004-04:00

"Divas are not made, they are born."

~Fiona Apple

Three??? How did that happen??? She is a walking, dancing, talking, laughing screamy screamer of a girly girl. She is her own person. Stubborn, strong willed, hilarious, compassion starting to show. Developing typically and effortlessly much to my relief.

Happy 3rd Birthday to our Diva!! Look out world she's three now!!!

Light It Up Blue

2011-03-18T07:19:00.000-04:00

April 2, 2011 is World Autism Awareness Day. My wonderful friend, Jess, wrote this letter to President Obama asking him to Light the White House Blue in order to raise awareness for our children with Autism. If you are so inclined, please drop by and ask Mr. President to participate.

Our children can't have acceptance till the world is aware of them. Awareness is only the first step down this yellow brick road.

Leave a comment for my boy and all the other boys AND girls like him.

C'mon Mr. President. I'll even say please.

Run The Hill

2011-03-15T13:11:00.001-04:00

So the marathon training is going well. I'm getting really quick on the flats but hills ugh. I am not a fan of running hills. They are a necessary evil.

A necessary evil. Boy Wonder has so many of them in his life. OT, ABA, ST, PT. Making him speak if he wants anything. Interruption of stimming and self injurious behaviors.

When he was being taught to go up a flight of stairs foot over foot, I kept saying, "Come on Baby! You can do it! One foot in front of the other!"

So as I run my necessary evils, I keep telling myself, "one foot in front of the other." I'll get myself up those hills just like Boy Wonder.

United/Divided

2011-02-19T00:16:00.000-04:00

United we stand; divided we fall.

Aesop

In the end we are all separate: our stories, no matter how similar, come to a fork and diverge. We are drawn to each other because of our similarities, but it is our differences we must learn to respect.”
Unknown

I watched Dr. Oz's show the other day. I don't normally watch his show but a fellow autism mama told me the topic was going to be on the causes of autism. I know this is a hot topic within the autism community. I know and understand that we can't prevent it, if we don't know what causes autism. I, also, do not think it's one thing causing autism.

It was a very divisive hour. I, for one, do not get all the infighting among the autism community. I think we all have a common goal for our loved ones with autism. We want them happy, healthy and whole. We want them to have a life of purpose. We want them to love and be loved. Whether you choose the GFCF diet, you see a Dan doctor, you believe in ABA, Floortime, RDI, or biomed, we want our loved one to no longer suffer from whatever particular demons autism visits on them.
We can not move forward if we continue to fight amongst ourselves. Our children needs services now and most of them will need supports through out adulthood. We are all entitled to our own choices and opinions regarding our own children. We know our own child(ren) best. What works for Boy Wonder may not work for your child and vice-versa. No two children with autism are exactly alike nor should their treatments, therapies or education be exactly alike. Autism is not cookie cutter.

Time is marching on for our kids. For their sakes, shouldn't we all make an effort to respect each other's differences of opinions? Isn't that what we are constantly asking of other people? To respect our children's differences? What kind of example are we setting if we can't respect each other's different choices?

It's time to stop fighting amongst ourselves and to start fighting for the reason we are here in the first place. Our kids. Are you willing to try?

26.2

2011-02-11T22:33:00.001-04:00

26.2 miles for Boy Wonder.

For all boys AND girls challenged by Autism.

In honor of the parents who blazed the trail.

For those whose biggest heartbreak is yet to come.

In honor of my friend who flies all over the country to get health insurance reform passed for our kids.

And my friend whose words offer me comfort and hope that I'm not alone.

And her husband who tells me I can run it.

And my friend whose faith is inspiring.

And my friend who gave me a glimpse into the possibilities of the future.

And their siblings who grow up quicker but wiser and with more compassion then the average bear.

And all my fellow mama bloggers to the right and the rest of my village who don't blog but I think of everyday and fool around on Facebook with on a ~~regular~~ ~~daily~~ hourly basis.

A 26.2 mile run in the 2011 NYC Marathon for Autism Speaks Team Up in honor of our quirky brilliant beautiful children.

Legs don't fail me now.

If you'd like to support my effort, please email me at BoyWondersMom1004@yahoo dot com for the link to my donation page.

This Would Be Funny If It Weren't So Damn True

2011-02-03T18:17:00.002-04:00

A Village

2011-02-02T22:25:00.000-04:00

Hillary Clinton said it takes a village to raise a child. That's even more true when you have a special needs child. We have a case manager, a teacher, paraprofessionals, occupational therapists, physical therapists and speech pathologists to name a few.

But what about us Mamas? Its been hard for me to connect with anyone here in the heavily populated 'burb where I reside. I tried the ~~whinebitchcomplain~~ support group at Boy Wonder's school. It wasn't a good fit. I found my village online. I've been fortunate to have met a few of them in person. This weekend I met even more of them.

It is wonderful to NOT have to explain. To speak in the shorthand of special needs mama. A sigh, a sentence that doesn't have to be finished because your thoughts and feelings are understood. Compassion without judgment or pity.

We drank and ate. We laughed like lunatics. We shared our stories. We cried and then laughed some more.

If your village is not in your hometown, look online. Read blogs. Comment. Write your own blog. We're here. To laugh with you, to cry with you, to have some tequila with you, to catch you when it's all too much and we are here to celebrate when your child hits one out of the park.

Come find us. We're waiting.

The Best $100 We Ever Spent

2011-01-22T07:45:00.001-04:00

Boy Wonder loves to swing. It calms him and helps him self regulate. Its also teaching him to take turns.

The DIVA loves that her big brother is playing with her. The only problem is Sweet Baby Girl thinks she's big enough to get in on the action. We'll just keep letting her try even though she's too little. Why? Because all of my kids playing and laughing together was not something I was sure I'd ever see.

What's the best item you've bought for your child?

So Anyway

2011-01-07T21:53:00.000-04:00

We received our independent evaluation from the BCBA and one line still has the power to steal my breath away and bring tears to my eyes. Do you know what it is? I think you do but I'll tell you anyway.

"Boy Wonder is a very handsome little boy with significant needs and delays."

It's a stab in the heart every time. Why? Because I no longer focus on what he can't do. Do we work on his deficits well of course. But I concentrate on how far he's come. He can go upstairs foot over foot. He can speak in a whole sentence. He can brush his own teeth. He's on his way to being potty trained. He's beginning to, however, clumsily and inappropriately begin social interactions. He has joint attention. There's many many more things.

But significant needs and delays in black and white will sucker punch me every time.

Surprise

2010-12-26T09:00:00.006-04:00

D.J.: Was I an accident?

Roseanne: No, D.J., you were a surprise.

D.J.: Oh. What's the difference?

Roseanne: Well, an accident is something that you wouldn't do over again if you had the chance. A surprise is something you didn't even know you wanted until you got it.

Happy 1st Birthday, Sweet Baby Girl!! My BEST Surprise EVER!!!!

From Our Home to Your Home

2010-12-21T21:25:00.000-04:00

May the coming year be filled with hope and progress and love. May you weather your storms.

For My Girls When They Are A Little Older

2010-12-20T10:19:00.000-04:00

My darling delightful girly girls,

Oh how I love the two of you. I love everything about each of you from the top of your heads to the tips of your toes. Watching you play together, the silly giggling, the let's splash each other in the tub and the snuggling each other. You two are delicious.

I want you to know that I love all of you equally. Boy Wonder takes up an enormous amount of time because of his Autism but it does not mean I love him more or either of you are less important then Boy Wonder.

All you ever have to say is Mommy I need you and I will make the time. Maybe not right that instant but I will do whatever you need as soon as I can.

We are all working so hard right now to get Boy Wonder where he needs to be so you my Diva and Sweet Baby Girl can have a brother who talks and shares and expresses himself.

You my darling girls have been so important in bringing Boy Wonder out of his world and into our world. If it wasn't for the two of you, I think he'd be even further behind. You two push him, engage him, aggravate him and make him laugh.

So my beautiful girls know that I love you both so much more then I can ever say.

Mommy

Lightbulb Moment

2010-12-09T23:38:00.000-04:00

Well Boy Wonder had his independent evaluation. It went well. We were told his school is great and that he works hard all day long. That you don't often seen this type of program in a public school. The BCBA also agreed that Boy Wonder has made the progress he has made because of school and his 15 hours a week of home programming. He will recommend in his report that the district should be paying for his home hours. Hopefully this will all go smoothly.

The BCBA asked if we had any questions. What does the future hold? Is it not enough all that what we do? As hard as we push him? I'm thinking we are working Boy Wonder every minute of every hour of every day and although his progress is miraculous I thought we'd be somewhere else by now. More typical, less therapies, more freedom, less worry. So yes I secretly hoped that possibly his school wasn't the best fit for him but it turns out it is. It is a bitter pill to swallow that my Boy Wonder is more profoundly autistic then I was willing to acknowledge.

So now we'll keep pushing him on, cheering him on, making sure he has all the therapy he needs to continue his miraculous progress while Mommy gets her head out of the clouds.

Never Say Never

2010-11-17T00:08:00.000-04:00

He'll never talk said the doctor.

Invisible

2010-10-27T13:07:00.000-04:00

They call Autism the Invisible Disability. There's no outward physical markers. When most of our kids sit quietly, you'd never know they have a disability. But our kids, for the most part, don't sit quietly. There is vocal and physical stimming. There's scripting, echolalia and rigid routines.

And then they do it in public and you get unsolicited advice and remarks. Or as Pixie Mama says people think of it as bad parenting.

Because when you see our kids with Autism all you see is their outward beauty. You don't see their brains misfiring, getting stuck on one word or script, or that even the softest clothes annoy them or loud sounds scare them. That for some the world appears to be through thick glass and for others its like being at a rock concert all day long in front of the world's biggest speaker or so bright it's like living on the surface of the sun.

I know you can't "see" their Autism. I know it because when I look at the picture below I can't see it either but it's there.

I wonder if you could see it would you treat our children more kindly? Would you show them tolerance and compassion? Would you keep your mouth shut and not offer unsolicited advice? Would you keep your remarks to yourself?

But in all reality, if you look you can see it. You can see it in their behaviors, their way of speaking and lack of eye contact.

At a current rate of 1 in 110 children living with Autism we are surrounded by it. Autism not really so invisible after all, is it?

Five

2010-10-04T08:50:00.000-04:00

Because I can't say it any better I will be stealing song lyrics today. Forgive me.

When I see your face

There's not a thing that I would change

'Cause you're amazing

Just the way you are

And when you smile

The whole world stop and stares for awhile

Cause MY BOY, you're amazing

JUST THE WAY YOU ARE!

Happy 5th Birthday Boy Wonder!

You have come so far this year. Keep the progress coming!

Love,

Mommy, Daddy, THE DIVA and Sweet Baby Girl

Bullying

2010-09-29T09:24:00.001-04:00

We've all been a bully or been bullied by someone at some point in our childhood. Whether we were part of a herd mentality or it's something we saw at home, we have all been affected by it at some point.

But the bullying in the news is over the top. To bully someone to death for suspecting they are gay, to break someone's arm for being a male cheerleader, or when an adult bullies a child with autism.

It begs the question, what example are we as parents setting at home? Are we bullying our spouse, our children, other family members? Are we standing by idly while one of our children bullies their brother or sister in front of us?

Are you teaching your children tolerance and respect for others? Or are you sending your children a message that anyone who is "different" deserves contempt?

Are you teaching your children to think for themselves when their friends are being mean? That it's ok to stand up and say hey you're being mean and knock it off.

I understand peer pressure and I get that for the most parts our kids want everyone to like them. But there are some kids who are different, who embrace their differences, who aren't afraid of a choice that may make them a target and shouldn't we celebrate those kids who are not afraid to be different?

What is to be gained by standing by while a child who has special needs is picked on by their classmates? Are you teaching your children it's ok to pick on someone with special needs? To use the word "retard" as a joke? That autism is something made up because there are parents who can't control their kids? That it's ok to THINK you are making yourself look better to pick on and abuse someone who can't defend themselves or doesn't understand you really aren't their friend?

Please please teach your children that no two people are exactly the same. That differences are wonderful. The classmate you mock and belittle today may be the one to save your life one day. Not everyone has to be friends but everyone should be treated with respect.

You are your child's most important example. Make damn sure you are a good one.

Resigned

2010-09-22T07:13:00.000-04:00

It's interesting how we all handle our kids challenges. We all want what's best for our kids. We push them. We fight for them. We won't give them what we know they want unless they specifically ask for it. Some of us know already that we are in for lifetime care as the physical and/or mental needs are so great. That our babies will always need a high level of care. For others, there still is the hope that they will have independent lives.

So you ask, J, just where are you going with this?? While in the grocery store recently I ran into a mom whose son is in Boy Wonder's class. She admired Sweet Baby Girl. We chatted for a bit. She then told me she was resigned to her son being a baby for the rest of her life. I had not much of a repsonse for that statement. I've met her son. He reminds me of Boy Wonder. The difference is her son is not getting all the after school therapy that Boy Wonder is getting. Her district won't pay for it and she can not afford it. The boys are not quite 5 and to hear her say she's resigned herself already saddens me. I wonder where her son would be if her school district would step up and do what's right and quite frankly APPROPRIATE.

I'm not resigned. Not just yet. There is still hope, possibilites. Maybe even a miracle or two. But resigned? Not even close!

The FAPE Dilemma

2010-09-16T17:00:00.000-04:00

Free and Appropriate Public Education right???

So when Boy Wonder was about to turn 3, we engaged a Child Advocate to help us through our first IEP meeting.

At that time, the school district was not willing to pay for any home hours. The Special Education Director's personal belief is that a kid should be a kid. We had 10 hours of ABA and Speech Therapy in home at the time in addition to the minimal services we were getting through Early Intervention. The Child Advocate advised us to stop all private therapy so that when Boy Wonder's progress wasn't satisfactory we could then attempt to get the district to pay for it. Big Daddy and I decided that this would not be in Boy Wonder's best interest. We continued paying for home hours ourselves and added on additional hours.

Boy Wonder currently has 11 hours of ABA and 6 hours of Speech Therapy at home. The district pays for 2 hours of ABA. He would be not have made the progress he has made without all of the private therapy. We are about to retain an attorney. We are going to request an independent evaluation of Boy Wonder's current program and ask that the district pay for the in home therapy.

He's come soooo far. I know his progress is nothing short of miraculous but I think he can do better. I am not sure if where he is now will get him where he needs to be.

Time to stand up for my kid. Put your seatbelt on.

Verbal Vomit

2010-09-09T07:39:00.000-04:00

THE DIVA can not stop talking. It is all non stop chatter around these parts. Whether she's asking questions, talking back to the tv or bossing Sweet Baby Girl and Boy Wonder around.

She was chattering non stop while we were out in the public the other day. A woman said to me, "I bet you can wait for her to be quiet." I just smiled and shook my head.

Because all you other mamas of non verbal/pre verbal children know when you have a child that talks and talks you know what a gift it is. They can chatter day and night and you'll never tell them to be quiet. I might ask her to lower the volume but never do I tell her to be silent. That sweet little voice is a balm to my heart even when it's shrieking at me to get her more grapes now MOMMMY!!!

So I don't care if she talks all day and night just so long as she does.

The First Day of School

2010-09-08T09:24:00.000-04:00

3 years ago Boy Wonder was diagnosed with Autism. 2 years ago, I put him on the bus to go special needs preschool. Today, I think of all the other parents who put their "special" babies on the bus for the first time. I want you to know it will be ok. You'll do it because you know it's what your baby needs. So put them on the bus, go inside have a good cry and they'll be home before you know it.