Invisible Again

In October of 2010, I wrote about autism being the invisible disability.  I wrote about how our children have no physical markers that signal to the world the way their brains are just wired differently. While autism awareness is more widespread today (since I wrote the original post the statistics for autism have shockingly gone from 1 in 110 to 1 in 50), the supports and services our children need are still hard fought for and sometimes denied. Services vary greatly from school district to school district and state to state. Some of us desperately need these supports for our children. It is the only way they can thrive and reach their full potential. Sometimes, it's the only way to keep them and other family members safe. We would like our children to be in the news for positive things. Not because they wandered away like Avonte Oquendo, where the school personnel failed to keep him safe.  Or the parents who murder their children because they see no other way out after being denied help and services time and time again. (I absolutely do not condone murdering your child which is why there are no links to media stories.)

So we as the parents are invisible until something horrific happens to one of our children.  Then the media and the public pay attention.  Then there is judgment, public outcries for justice and finger pointing. How much suffering and how many tragedies could be avoided if the people and system who are designed to help children like ours actually worked? What if, instead of judging us after the tragedy, you put your hand out and helped to prevent the tragedy. Society is reciprocal. At some point all of us will need help from one another.  No one's life is free from difficulties.

If you are the friend of someone with a special needs child, you offering to watch the child for an hour, bringing a meal, calling with a funny joke or just being a shoulder to cry on could make a big difference. I am fortunate that I have a strong support system in place. Some friends with typical kids and a wonderful network of special needs moms and dads who will come if I call and say for today I can not face this alone. I, in turn, have the same offer on stand by for them as well.

The tragedies need to stop. They can be stopped with support, love and compassion.  The autism rate has soared in the 6 years since Boy Wonder's diagnosis.  Autism crosses every race, religion and socioeconomic barrier. It does not and will not discriminate. We could be you some day and we will be here for you.

Hi

I always talk about how we waited for Boy Wonder to talk. Getting him to talk was difficult and mostly him just repeating back what was said to him.  His progress over the last two years regarding speech has been phenomenal. The little boy we were told would never communicate can talk . Is it conversational? Well no but he can tell us what he wants. He can say hi to people. In fact, it's one of his favorite things to do.

Every morning, I hear him fling his bedroom door open and he comes running down the hall. He bursts into my room and jumps in my bed with me. He presses his forehead against mine and says, "Hi!" and that is the very best way to start my day. Now if I could just get him to bring me coffee in bed. A girl can dream, can't she?

Snow Day Playlist (Where is Summer?)

Yay There's No School (Xanax Time)

No You Can't Wear Shorts with Your Snow Boots (Put On Your Damn Snow Pants)

I've Got My Snow Pants On! (Mommy I Have To Pee)

Snow Boots On the Wrong Feet (Accident Waiting to Happen)

30 Minutes to Get Dressed (5 Minutes Outside)

Delayed Opening Would Have Worked (Superintendent's A Moron)

We Only Throw Snowballs at Daddy (Mommy Will Kick Your Butt)

Make Us Hot Chocolate (So We Can Dump It In the Garbage)

Mommy's Our Short Order Cook (Look At Our Maid Cook)

I Need Dora's Map (Looking for My Sanity)

I Saw Mommy Kissing the Bus Driver (Day after Snow Day)

4  PM is the New Bedtime (Benadryl Darts)

I Love My Kids (Especially When They Are At School)

Humor is the only way to stay sane when you've had way more time with your kids than you should have had since mid-December. Now if you'll excuse me I'm going to go make a drink. It's 5 o'clock somewhere.

The Goal is Happy

"When I was 5 years old, 

my mother always told me that happiness 

was the key to life. 

When I went to school, 

they asked me what I wanted to be when I grew up. 

I wrote down ‘happy’. 

They told me I didn’t understand the assignment, 

and I told them they didn’t understand life.”

― John Lennon

I always said that when I had children that I wanted them to be happy. I didn't care if they were trash collectors as long as they at the end of the day they could honestly say they were happy. By no means does this mean I do not or will not encourage them to reach their full potential. I will not, however, force them to do things just because they look good to other people.  Forcing kids to do something because you feel it makes you look like a good parent, to me, is kind of the opposite of a good parent. I'm not talking about making them eat vegetables or go to sleep early, the daily nitty gritty of parenting. I am not talking about making a commitment and then walking away when they change their mind. I'm referring to letting a child find out who they really are without undue pressure to be daddy's football player or mommy's ballerina.  Sometimes, a child's interest is very different than a parent's dream of what their child would be like when they were born. And sometimes you have a child who is not a child you ever imagined when you decided to become a parent.

6 years ago today, Boy Wonder was diagnosed with severe autism. It was devastating and life changing. I felt then, and sometimes still do, feel ill equipped and vastly under qualified to parent  a child with a disability. But BW has taught me so much. He turned the world right side up. He made me more patient (mostly), far far less judgemental and he showed me that proving people wrong is really really fun. 

I may doubt my ability to make the right choices for him when he can't tell me what he wants or why he is upset but I do know for the most part that my boy is a happy kid. So while we may have a bunch of IEP goals unmet and life skills we have been working on for years at home, I do know that my biggest goal for my son is met daily, he is HAPPY and in the end that's all I ever really want for him and his sisters. 

Eight Years

Eight years of

love and joy

smiles and giggles

tears and struggles

late nights and early mornings

learning and growing

turning nevers and can'ts into yes he can

inspiring and silly

miracles so very many miracles

and a whispery deep little voice that says,

"I love you to you"

Happy 8th Birthday to the Guy who stole my heart!

You are love personified.

 

Run, Run, and Run On

Yes I am running again this year with Team Up with Autism Speaks in the Allstate Boston Half.  I've been asked when I'll stop running but I don't plan on stopping. Boy Wonder will always have autism. His sisters will always have a brother with autism.  I don't run for a cure. We are long past the stage where I use words like cure or recovery. Boy Wonder has autism. He is profoundly needs life time care autistic.

So why do I keep running? Why do I stand up at Board of Ed meetings and say no this isn't right? Because my little boy's life still has potential, meaning and value. He has taught me what unconditional love for your child means. He taught me the joy is in the small moments of achievements. That the nots and the nevers aren't necessarily true.

I run because more children will be diagnosed this year with autism than with any other type of lifelong disability. When Boy Wonder was diagnosed 6 long/short, all mixed together years ago, the rate was 1 in 150. The rate now is closer to 1 in 50. I wonder what it will be if I/We don't do something now when Diva and Sweet Baby Girl are thinking about having children.

I run for the special educators who love our kids, for the services Boy Wonder will need when he ages out of the education system because the waiting lists for those services are endless, I run to know why my boy has autism so his sisters can make their choices with more knowledge than I did. I run for his sisters (and all the other siblings) who love their brother and know how to make him laugh and smile despite being only three and five years of age.

I run because I can because there's nothing I wouldn't do for my three babies.

Cause we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we're miles away
So we'll come
We will find our way home

If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on 

Carry on by Fun 

Ed's Note: You can click the Team Up with Autism Speaks to donate or you can click the Allstate Boston Half to register to run.

But for the Grace of God

When Boy Wonder was diagnosed with Classic Autism just under 4 years ago, the rate was 1 in 150 kids had autism. Then it was 1 in 110 kids. The current rate is believed to be anywhere between 1 in 88 or 1 in 50 kids have some type of Autism Spectrum Disorder.  We are your "But for the Grace of God" story. 

We hear what you say about our kids. We hear what you say when we aren't there to listen when you speak about our kids. And it always eventually gets back to us what you say when we aren't there. To your kids, " Be nice to Johnny. He has special needs" in your Florence Nightingale voice yet then you complain that your kids were placed in the inclusive classroom with our kids.

You complain about what it costs to educate our kids out of one side of your mouth while looking at us with eyes full of pity while rubbing our arm and asking in your most sorrowful voice,"How's Sally doing?".  Then you stand up at a Board of Education meeting and ask if (insert extracurricular activity of your choice here) was cut because of what it costs to educate those special needs kids and furthermore, that our kids are holding your kids back academically.

We hear you and we see you. More importantly, your kids see you. They see your hypocrisy and your double standards.

I'll let you in on a little secret. I'm no saint. I didn't chose to adopt a special needs child. Most of those who have kids with special needs didn't chose this path. It was thrust upon us by some random act of God, genetics or luck of the draw. I know I checked off the smart and perfect child who will never give me a moment's worry. He or she would grow up, go to college,  and have a happy, successful and independent life.

Let me ask you a question. How would you feel if I said well since my kid can't participate in (insert extracurricular activity of your choice here) I'd like it removed from the school. It's not fair to have (insert extracurricular activity of your choice here) since my kid can't and most likely will never participate. That's not fair now is it?

Federal Law protects Boy Wonder. It mandates that he is given a Free Appropriate Public Education. Your child is also entitled to a Free Appropriate Public Education.

So what does your child really learn by having children like ours in their classrooms? Hopefully, they are learning empathy, compassion and an appreciation for other people's differences. They are learning tolerance and acceptance. Aren't these all things that will serve your kids well when they are adults? Yet you want to take that away from them. I bet you think you are all these things but you're not. Your words and deeds have proved otherwise, yet it's not too late for you to change and be a positive example for your kids. Autism and other developmental and learning disabilities are NOT contagious but bigotry, ignorance and intolerance are very contagious.

I Wouldn't Want This For You

I wouldn't want this for you.....

the sleepless nights

the endless toilet training 

or 

the Code Brown that goes along with it

the physical, emotional and financial toll it painfully exacts daily

the worry of what happens when we are gone

the worry of what someone may do to him without us knowing

the effect on his sisters

the epic crying tantrums

and the guessing why that goes along with those tantrums

the hours of endless screaming vocal stimming 

the stares and the judgments that go along with those stares.

the battles with the school districts.

I will unselfishly keep all these to myself.

I would want  for you.....

the wonder of small miracles

the belief that he can do so much more than we are told

and 

that he is in there with so much to offer

the big belly laughs 

the whispered halting I love yous and pick me ups

the unexpected oven mitt to the head informing the world his pizza is ready

his forehead pressed to mine and saying hi

the absolutely adorable way he chews gum

his sweet sleeping face when I find him all wrapped up like a mummy in his sheets

Those I will so selfishly keep for myself.

The Typical Not So Typical Day

We don't often get to do things without a schedule or taking into consideration what Boy Wonder likes or will tolerate. The girlies are far too often asked to put what they want aside for their brother. Is it fair? Well no but there's a difference between fair and right. Sometimes they aren't necessarily the same thing. Last week I took the girls for their birthday pictures. Yes one of them was three months late but that's how we roll. So after the pictures, we headed to the mall to see the Easter Bunny. We've been trying to talk Sweet Baby Girl into her first haircut for months. She had up until that day that she "no needed my hair cut you silly Mommy. Haircuts are for boys." Well she said in the car, "I want my hair cut. Just a little. Like Diva gets." So I decided I'd let the housework and all the other things on the agenda for that day slide. They rarely get to pick how the day goes so off we went. First we rode the elevator (a few times cause hey we could) instead of BW's beloved escalator. Then someone was ready to be a big girl with Bunndee peeking out from under the cape for moral support.

Then they decide it was time for the Easter Bunny. He never knew what hit him.

Then we may or may not have have a Crumbs Cake Push Pop for lunch by the fountain.

Oh and in case you were wondering, Diva doesn't live here any longer but Cheddar the Bunny now lives here.

And then they were ready to go home. They had fun. As I tucked them into bed that night, Diva whispered in my ear,"Funnest Day EVER!!!" And it was for them and for me.

Glittering Glowing Gregarious Gorgeous Five

My oh my how we have changed over the last 5 years. From helpless baby to a strong, independent, funny, smart, loving, compassionate, so gorgeous you take my breath away girl. You are.........

 Glittering

            Glowing

Gregarious

Gorgeous

Five

Happy Fifth Birthday Diva! 

May you always be as happy as you are today!

We love you!!

So here's to a child
who is joyful and clever.

Happy Day. Happy Year.
 Happy Always and Ever.

~Happy Birthday Little Pookie
Sandra Boynton 

How Was Your Day?

How was your day? You ask your kids, your spouse or significant other (if you have one). You ask a friend or a loved one who you know has something either wonderful or difficult going on.

If you have typical kids, you know the details don't come all at once. The highs and lows, the nitty gritty details come out over the course of dinner, bath time and bed time. They let the little things and big things out. We learned a new song, Mommy.  I have a new friend. George has a new baby brother. I cried because someone was mean to me. I got a time out for not listening. I didn't like my lunch. And so on and so forth. The details come out, so you get to know what they did and how they were while not being with you. 

I have never hid the fact that we swim in the murky deep end of the autism pool. Boy Wonder is not able to tell me how his day was, good or bad, what he did or what he learned. I can only know from what I observe of his mood, his behaviors and what ever it is he chooses to show me he has learned because the language and ability to communicate at that level is simply not there at this time. For the boy, we were told would never be able to talk; not even able to communicate the want of drink or food or to ask to use the bathroom who can now do all of these things, I do believe it is wholly possible that some day he will be able to tell me about his day.

So that's why when the yellow bus doors swing open every afternoon and I see my gorgeous boy's big smiling face I ask him, "How was your day, handsome?

Patience

And 5 years ago when Boy Wonder was just two years old we started on the never ending toilet training road. We stumbled. We learned how to clean things. Boy Wonder learned that we knew he could do it so if he messed up, he'd be cleaning it up.  Consequences, praise, incentives, positive practice, regression and progress we've been through it all.  We decided this would be the one fight we'd never give up on. So much of his independence depends on this one life skill. And just when we were thinking when will this skill be attained, it clicked and Boy Wonder started taking himself without prompting on a consistent and regular basis.

So good things come to those who persevere. The wait and the hard work were worth it. Sometimes the long and meandering road is hard and lonely but in the end if it gets you were you need to be and you know that all your patience, hard work and love has paid off. And knowing that makes you more patient and willing to wait for the good things that come from those you love.

Unexpected Gift

Because sometimes the unexpected gifts are the things you never planned on but love the most.

#ThisisAutism

The misconceptions this week have been horrifying.  

Autism does not equal evil. 

No More Apologies

I had to bring Boy Wonder with me when I took the girls to school this morning. As we were walking out of Diva's class, another mom was walking her little girl inside. She had a Dunkin' Donuts bag in her hand. Boy Wonder loves him some munchkins. It was one of his first words. Mr. Eagle Eye can spot a bag or box of munchkins quicker than I don't know what.  Boy Wonder spied the Dunkin' Donuts bag in her hand and tried to take it out of her hand and then I said," I'm sorry. He has autism." and it sounded to me like I was apologizing for his autism. 

I can't and won't apologize for his autism.  I correct his bad behavior just as I do his sisters' bad behavior but he is who he is. His autism is so deeply embedded in him that there is no separation. There is no line to see who he'd be without his autism. I can not apologize for who Boy Wonder is and then expect people to accept him for who he is. 

Because Boy Wonder is a smart, funny, joyful, happy loving brown eyed snuggly boy who happens to have autism. No apologies necessary. 

Be The Woman......

You would like your daughter(s) to be:

financially independent

and better yet,

emotionally independent.

Caring.

Compassionate.

Loving.

Self accepting of their flaws AND

their beauty.

Try new things.

Fail or succeed but

always get back up.

Shine brightly.

Be proud of your differences

and

accepting of others' differences.

Look for the humor in life.

Don't hold a grudge.

Forgive.

Apologize when you are wrong. 

Know when to fight 

And when to walk away. 

Speak up for those who can not do so for themselves.

Let go of the past.

Enjoy the present.

Look forward to the future.

Know that things change 

slowly

and/or

instantly.

Set the example for the woman you would like your daughters to be and your sons to marry.

Restore The Shore

We are here. Alive and grateful that we only lost power for 36 hours. We have heat, electricity and running water.

Our friends and loved ones on the Jersey Shore were not so lucky. They lost everything. My BFF, D and her husband are spearheading a donation drive. They are renting at their own expense a very large U-Haul truck. Please help us fill it.

The people need, diapers, wipes, cleaning supplies, bleach, rubber gloves, toilet paper, paper towels, toothbrushes, toothpaste, feminine hygiene products,  soap, rubber boots, warm adult and children's clothing, coats, hats, blankets, etc. Anything you can think of they need.

 If you would like to donate, please email me at boywondersmom1004@yahoo.com. We are in the Northern New Jersey area. If you can help in anyway, it will be greatly appreciated by this Jersey Girl. 

We are down but we are never out. Why? Cause we're from Jersey.

The Other Two Reasons I Run (Run for My Girls)

Mommy, you're going running again??? Can't you stay home?

~Diva

Mama, watch me watch me. I run fast just like you. Give me a medal.

~Sweet Baby Girl

I don't only run to raise awareness and fund raise for Boy Wonder, although I'd run barefoot across the surface of the sun for that kid if it would help him.  I run for my girls who will grow up as siblings to a brother with serious special needs. I run for the girls because their happiness is just as important as their brother's although at times to them it may not feel like it. 

I can not change the fact that Boy Wonder has autism. What I am trying to prevent is my girls from hearing is "your child has autism." I would like  my girls to never know this heartache. I'd like for them to never know worry and fear, sleepless nights over your child's future who can't take care of themselves. 

So I don't only run for my son, Boy Wonder but for his sisters who love him fiercely and who often deserves more then they get in the way of time and attention but all I do is for them too. Especially the running.

Seven

Seven years....

of big silly grins

delicious belly laughs

of those big brown eyes

puckered up kisses

carrying you on my left hip

of ups and downs

of small and big miracles

of pure unadulterated love

Happy 7th Birthday Boy Wonder!!

Joint Attention

Boy Wonder, age 2 years 1 month, presents with a complete lack of joint attention.

Boy Wonder's Initial Evaluation 

November 9, 2007

One of the best things about parenting small children, ya know other then the whining and your pants being a walking tissue, is seeing the wonder and laughter in their faces when they experience things for the first time and their little faces looking back at you to see if you are seeing and experiencing what they are experiencing.  That type of connection with your child is what every parent expects but when you have a child with autism those moments are hard to come by. They are focused inward. You fight your way into their world and try to bring them out to your world. You wait for that connection and in our case we waited years. 

While not a daily occurrence, joint attention does happen more and more with Boy Wonder. We took all of them to the Bronx Zoo on Saturday.  They had a Dora and Diego 4-D short film exhibit about a robot butterfly. We were hesitant to take Boy Wonder in. Would he keep the glasses on? Would he vocal stim loudly to the point of annoying other people? Would he just flip out and need to be taken out quickly? We looked inside the theater. It wasn't even a quarter of the way filled. We decided to sit in the front row with Boy Wonder and Big Daddy positioned near the exit. Boy Wonder decided he'd sit on his Daddy's lap.  As the lights went down we put the 4-D glasses on him and Dora and Diego sprang out at him and he laughed, his big delicious belly laugh. He watched the butterflies come dancing onto the screen and reached out to touch them and then he looked over at me to see if I was watching and laughing too and when he saw I was laughing,  he laughed harder. That connection is all that more meaningful because it's been an uphill battle and we are rewarded with the sweetest victory.