A Village

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

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

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

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.