Surprise

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

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

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

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

He'll never talk said the doctor.

Invisible

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

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

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

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

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

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

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.