hold my hand.

Today it happened.

I can't believe that I almost went to bed without writing about it. I can't believe I forgot to tell Justin or the WORLD that it happened.

Today. Maddy. Reached. To. Hold. My. Hand.

She said "hold hand" and gently slipped her hand into mine as I stood talking to Ashley about their session. So quiet. So innocent. Like she had always been doing such a thing as that. Not knowing that her Mama had been waiting 2 years and nearly 5 months for her to do it. Hoping. Praying. Maybe someday.

Today was that day. She held my hand for a few short moments before she realized that we weren't ready to leave yet. My stomach did flips and I wanted to swing her around the room and tell her how awesome she truly is....but I held back, fearing that kind of outburst might prevent her from doing it again. It seemed to her, quite a natural thing to do.

Thank God.

Maybe she will never know just how unnatural that had become in such a short amount of time.

Catherine Maurice writes in several of her books about the day when her own daughter had suddenly walked over to Bridget (her ABA therapist), took her by the hand, and led them to their therapy room. With a smile on her face and happy to go.

I read that with a hopeful heart but a shadow of doubt. I didn't know if Maddy would ever do that. Would she ever walk into her therapy room with any one of us by the hand with a smile and an eagerness to learn? Is that asking and hoping for too much? Is that really possible?

It really is.

Starting ABA, we planned for the worst. Typically kids with Autism lash out at any kind of intrusion into their world and ABA is quiet an intrusion. A very physical and emotionally demanding experience on "their world" - and sure, Maddy did protest but not the extent I had prepared myself for and nearing the end of week 5 and calendar wise - a month into this - she hardly ever protests now. School has become fun.

We see so many wonderful things emerging from Maddy now. We have alot of work to do....don't get me wrong...ALOT. But she really is coming out....inch by inch.

Tonight I gave the girls all a glass of water for supper. Just plain water in a plain glass. No sippy cups. And as each of them sipped happily from the glass, I marvelled at such a moment. No sippy cups at the table. Really? Are we really getting there?

You see, having twins and a sibling who is only 2 years older....has been a lifetime. I know we've only been in the world of sippy cups for 4 years now but it sure felt like an eternity. That any small glimpse is welcome. Imagine. No sippy cups. Will I be sad? Will I be happy when I toss the last one out? I'm sure I'll have the usual tinge of sadness coupled by the thrill of independence and mobility.

Why is this so significant? Because there are kids out there with such severe Autism that they won't even drink from a cup, sippy or not. Nor a bottle. They are tube fed because they simply will not eat or drink. And when your child is diagnosed with Autism...you have no idea where that slippery road is leading you to. No clue. And no one can tell you either. The spectrum is just that: a spectrum. 

Are we recovering her? I sure hope so. We're FAR too early to tell. We're seeing alot of progress. Immense progress. May God let it continue. 

For now let me enjoy the memory of Maddy's tiny little hand in mine. Gripping it tight, waiting for us to leave. Walking down the hall. Hand in hand. Like any mother's dream.

hard knocks.

We found out last week that in July when we thought Maddy had received a "preliminary" diagnosis of ASD...it was in reality the actual diagnosis of Autism.

I can't really explain the number that did to my soul.

I got mixed reply about it. Some felt my hurt. Others saw it as good for our fight against insurance. I see both points. But pre-cancerous cells sounds a heck of alot better than cancer doesn't it? So does preliminary when placed before Autism.

Sigh. My heart hurts.

We're in the fight and just realized from the headquarters that we're in a war. Crap. We're gonna fight the same way but it just became a bigger foe than we anticipated.

And fighting Autism is like a war. Believe me. My heart go out to all my fellow warriors fighting to recover their children from the greedy arms of the dark, hallow enemy.

Sometimes I wish I was just being overly dramatic. I can be that way by nature but in this case, I am not. Really. I'm not. Autism creeps in slowly and before you know it, your child has changed. Slowly being engulfed by something that we cannot see, taste, hear, touch, or smell. Cannot be measured by a microscope or a blood test.

There are so many ups and downs. Yes, we got accepted into SKILLS and our curriculum is going to be handed to us in a few short weeks...but all the work is ongoing. We're so blessed to have this opportunity. The battle is really hard.

Maddy held my hand for 3 seconds the other day. She reached for me and gave me a hug. She asked for some more water. She asked for some "help" to "open" a pudding container. She asked me to "open gate" when she wanted to come in for supper. She laid on the floor on the other side of the Little People Play House as her twinie Maelle, sat on the other side and they took the Little People in and out of the door both jabbering away in a mix of "twin speak" and actual words. These are all glorious things. Phenomenal things. Things I wasn't sure would ever ever happen.

We took family pictures on Saturday and were quickly reminded at just how far Maddy has to go yet. It wasn't an absolute disaster, by any means, but it wasn't fun either. Maddy tantrumed, cried, ran like a crazy monkey child in and out of the portrait studios. She would not sit. She would not stand. She would not smile. We did manage to get a family picture with her smiling and ONE picture with her by herself with a smile. That was good for us. We called it a wrap. If you think 3 kids (with twins) is tiring...add autism to the mix and it just got exhausting.

Add the ABA, Speech, Occupational Therapy to the mix. Then preschool for the other kids. Early Intervention. Church. Bible study. The housework. Cooking. Our dogs/cats. Laundry. Driving everywhere (it takes us 1.5 hours ONE way for Speech and OT and we do that two times a week...that's 6 hours out of our week just driving).

I'm tired.

But I'm doing this for you, Maddy Girl. For you. Because God gave me you...He trusted me with such a precious jewel and I know He wouldn't leave me alone with you. Steadily, He is guiding us, holding us, crying with us, smiling with us, laughing with us, and cherishing the joy that you bring. He will bring you through this. For whatever reason, He chose me to be your mother. A blessing that, at times, I wonder what exactly He saw in me to give me such a responsibility. You are going to do great things. Your joy could teach us all a lesson or two. I know that I've said that before. I will say it again.

You are His child and I'm doing everything I can to trust in that. To be the best Mommy that I can be to you. To help bring you out of Autism's shadows and into the light of the world around you. You're bright, Maddy Girl. Super bright. 

Mommy loves you. Always. 

I'm tired but I will never ever be too tired for you. 

answered prayer.

Dr. Tarbox wrote me back today to present us with the info to be part of the Beta Trial version of the curriculum which is called SKILLS.

pause.

I want to scream and cry with joy all at the same time....but foremost thank GOD for this. Thank you, Jesus. Without You, we wouldn't even be here.

And thank all of you for your prayers and petitions to Him for this to happen. Really.

Thank you.

Beta launches Nov. 15 and I will be eagerly waiting at 12:01 am to get going with SKILLS.  We have until January 1 and then Beta will be turned off and SKILLS will launch to the public for subscription. Did you catch that? Yes, we have a month and a half of free access to this. Praise God.

quick.

Dr. Tarbox emailed me back yesterday. He is looking in to what he can do and he will be talking with me soon. That's nice. Keep praying.

Maddy is doing quite well. Though her sleeping has taken a turn for the worse. I fear she has gotten used to the melatonin like she got used to Benadryl and it's really not that effective anymore...I don't know.

I hope to write a much longer post later today but my house is an absolute disaster, I have bible study homework to do and data sheets to make and organize and video tapes to watch.....so we'll see.

opportunities.

So here's the deal. I went to an Autism + ABA seminar today presented by Dr. Tarbox is the Director of Research and Development for CARD (Center for Autism and Related Disorders). CARD was founded by one of the leading ABA specialists in the country and their main goal is to help teach and recover children from autism. During his seminar, Dr. Tarbox spoke about how CARD has developed the most extensive curriculm ever created for ABA and children. Some 4,000 tasks that every child needs to know between the ages of 0-7. They took that curriculum and put it online and are in the process of launching this very new and innovative software. All of it is completely tailored to each child and really the opportunities of this software and curriculum is endless.


Dr. Tarbox told us the curriculum is set to launch in Jaunary but they will begin a beta version for parents and some schools starting hopefully in November. So I asked him directly how I could get on that list. He told me to email him and he could sure see what he could do. So afterwards I did speak with him a bit, he gave me his card and told me to email him for more info on it. I don't know if he was simply just being nice and I have NO chance of ever being involved with the beta version of this...but I don't care. I emailed him anyway tonight explaining our situation....how impossible it is to FIND treatment out here, let alone curriculum....and with a quick prayer sent it off.

Yes, this will be available to the general public in January and they haven't set a price on it yet but I can assure you it will NOT be cheap. In fact, I doubt it will be ANYWHERE near afforable.

Please pray that we will be given this opportunity for Maddy. That God would make this happen. Pray. Pray. Pray. The opportunities that this would bring would be endless. The stress level for finding the best curriculum and resources for Maddy would go down immensly! I really can't begin to stress how much of a gift this would be. Sure, we would still need to do TONS of work and it sure wouldn't recover her without all of my wonderful friends and prayers and lots of hard hard work. It would just be one less thing to worry about.

Pray.

I will keep you updated.