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.