The Four Hardest Words

It's not the load that breaks you down,

it's the way you carry it. 

~Lena Horne

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

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

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

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

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

Recipes

Recipe for Guilt

1 cup of comparison

1/2 cup of looking back

1 cup of self judgement

2 tablespoons of regret

 

Stir, wallow, self-pity

Best if kept to yourself.

Recipe for Hope

1 cup of appreciating uniqueness 

1/2 cup of looking forward

1 cup of compassion

2 tablespoons of joy

 

Stir, celebrate, enjoy.

Best if shared with the village.

 

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

I Never Run Alone

Incidentally x 2

Children have to be educated, 

but they have also to be left to educate themselves.  

~Abbé Dimnet,

Art of Thinking, 1928

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

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

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

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

Back and Forth

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

I can’t.

I can.

He’ll always need care and supervision.

He’ll outgrow his diagnosis.

I knows what’s best.

I have no clue.

We’ll have a conversation.

We won’t have a conversation.

I’ll know what he’s feeling.

I’ll never know what he’s feeling.

I’m not cut out for this life.

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

His sisters will resent him.

His sisters will protect him.

People will reject him.

People will accept him.

A lifetime sentence.

The gift of a lifetime.

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

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

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

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

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

A Rant About F.A.P.E.

I'm different; not less.

Temple Grandin

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

by the Rehabilitation Act of 1973 

and the Individuals with Disabilities Education Act.

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

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

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

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

.

Hopes

Hope arouses,

as nothing else arouses,

a passion for the possible.

~William Sloan Coffin

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

 For Boy Wonder to express what he's feeling.

A smooth transition.

A year of teamwork.

An IEP followed to the letter and in spirit.

Progress in small ways and big ways.

Open honest communication. 

Less bullshit cause I'm tired of bullshit.

Educators who want my Boy Wonder to succeed in life.

A bus that shows up on time.

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

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

Shoes

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

Anonymous

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

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

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

And I figured that out while wearing these. 

 "The perfect shoes can change your life."

Cinderella

Or at least your perspective.