Sunday, March 13, 2011

here we are.

There is a buzz around Facebook.

A buzz that I created, I will admit it.

A simple post that said, so much to say, but for now, say good-bye to ABA.

I left you all in a bit of a shadowy mist wondering what in the world was happening. Good-bye to ABA?! Are you nuts?!

The fact is this. She doesn't need it anymore. We've expounded our limits of what we can appropriately teach a girl who is almost 3 years old. We could easily teach her to read, ABA style, but most almost 3 year olds don't read. Most 3 year olds don't care to read. They love to play. And giggle. And run. And sing. And be goofy.

And the sole purpose of ABA is to teach basic life skills. To rewire the brain from Autism world to reality. And we have done that.

We have met with Dr. MAL, who continues to be astounded by Maddy's progress. She is amazed. With every new emerging detail of Maddy's development, her eyes would grow larger and the smile broader. Maddy, herself, was at the latest meeting and while the first half she was grumpy, tired, and coughing from her cold; she eventually moved into her happy bubbly self, playing with toys, singing songs, and cuddling with us. Answering questions. Full eye contact. Even called Dr. MAL by her first name when I asked her to.

Maddy had begun her ABA journey with just shy of 30 hours a week in September. Full intensive ABA. About 3 months in, we had to backpeddle to 20 hours, purely due to losing Melissa to bedrest, but she did fine with it. In January (was it January?) we cut her ABA in half to see how she would do and added peer play. By late February, we were down to 5 hours a week...with 5 hours of peer play and another 2 hours of Speech and OT. Her peer play included going into the private preschool that her sisters attend for 30 minutes at a time with 3 year olds.

Last week, she was sick with a double ear infection, Justin was away on business, and another member of our team went on bedrest. So there was no ABA last week. And Maddy...was...fine. Granted, she was sick, but she was ok. No regression.

So it is time to test the waters. To see how well Maddy can do with just peer play and general one-on-one time with her teachers. We plan to be adding more and more time in the preschool while it is still in session, with a goal of having her attending the preschool for the full 2 hours (with one of us to help her) by the end of May when school lets out. To prepare her, the best we can, for what this fall will bring. We have taught her all that we can, now we must apply it fully.

The day that we had the meeting with Dr. MAL, I was with my brother and his family as he had undergone a thyroidectomy to remove cancer. (he is doing really well, by the way) So I went to the meeting, then drove the hour drive back to see my brother, spent the night and came home to a busy Thursday. Friday, we had Eva's best friend over and all 4 girls played together nicely. Then yesterday.

It was a typical Saturday with Justin working and the girls and I were storm stayed at home (a major blizzard had blown through and prevented any kind of outdoor activity.) And Maddy was just purely amazing. I can't even describe it. She was just so....Maddy. She followed Eva around like her shadow and played every single game that E wanted to play. She played Little People with Maelle. She giggled with me at the kitchen table. She told me "secrets", gave me "big hugs", danced to the Alphabet song, worked on potty training (she is doing REALLY well at this!), and was about as neuro-typical as she could possibly be. She took her nap. She watched TV. She ate her supper (kinda...my kids don't eat). She wrestled with Justin. She sat on the couch, ate popcorn and watched Aladdin with her sisters. And at bedtime, without any melatonin, I could hear her in her room, talking herself to sleep.

I have never before heard Maddy talk herself to sleep. Even as a baby, she never did this. She would always be rocking and groaning. Or just groaning before she was able to rock.

If you have never heard a child talk themselves to sleep, I encourage you to find someone with kids and ask to hear it. It's beautiful. She was carrying on about something and giggling. Every so often she would get loud then soft. Eventually, she did rock, but only to get me to come into her room where she informed me that her "MILK EMPTY! EMPTY! EMPTY!" and once I gave her more, off to sleep she went.  (I know. I should not give her milk at bedtime. She has a pacifier too. these are the least of my major concerns. If, at 16, she requires these things...I will become alarmed)

I could honestly cry, for days, about what this feels like. To see your child go from happy baby, to lost in autism, to emerging giggling toddler/preschooler. To see the sparkle return to her eyes. To hear full sentence explanations coming out of her mouth. To have her reach for my hand. To look into her eyes and she says "love you, mommy" before you ever even have a chance to tell her that you love her.

It is. amazing.

And any given moment, I want to thank God for this amazing miracle child that He has given me. You never want to ask for a miracle but when you are blessed with one, you can never, EVER, deny His existence. He is. And though we should not need proof, Maddy is it. Miracles do happen.

The dark side to this would be the doubters. The people that claim she must have been misdiagnosed or that we're CRAZY to think that she is doing so well.

Misdiagnosis?

She was not misdiagnosed. And to say that she was does a disservice to me, Maddy, my whole family, our whole team, the autism and ABA community, and God himself. Miracles happen in the world of cancer and other related diseases daily. They don't skip over autism.

Are we crazy?

Well, yes, everyone is a bit crazy. But anyone who knew Maddy before and knows her now would say we are not. She is doing so well. In September, we sat for hours just to get her to LOOK at us and now, she searches for our eyes for confirmation of what she is feeling or asking.

Is she recovered?

This is the trickiest of questions. My answer is....not yet. Close. But not yet. We are approaching this with cautionary optimism. She is still dealing with some sensory issues and hand strength. But we came from a time when we didn't even know what she was cognitively understanding to having weak hands with sensitivity. Her head sensitivity is getting better. She lets me do her hair now and gets excited when she has her "piggies" or any kind of pony tail. Yesterday she let me clean one of her ears, before I couldn't even look at her ears, let alone touch them. But her sisters were having their ears cleaned and she said "Maddy's turn!" and laid on my lap and let me clean one of them before she was done.

Off handedly we asked her if her name was Maelle and she said, "No. I'm Maddy. That's me. Maddy. Not Maelle." (funny since she pronounces Maelle like MAIL and not May-el. But Maelle still calls her Manny from time to time so I think they're even)

We go back to see Dr. MAL in 2-3 months. When, most likely, she will reassess the autism diagnosis. When, most likely and Lord willing, she will lose her autism diagnosis. Our insurance company now is blaming the paperwork that states they are paying for her visits on an error by a reviewer and that we are accountable. Amazing that we have to pay for someone else's mistake. Oh the world of insurance.

But it does not even barely shadow what was happened. Nothing can touch this. I have my daughter back. The beautiful, happy, giggly, sweet, goofy, energetic, social, laid-back little girl that I always dreamed she would be. And more. When she was born, she was such a sweet baby. Always grinning. Quiet and content. I had dreams of what she would be like when she was 3. To see her become them and more so, is breathtaking.

I prayed to God that my baby would return to me by the time she was 4. Please. God. bring her back to me by 4. (most aba programs are 2-4 years long) Please. If you bring her back, I can survive those 2 years of blackness. I will. I can. Please. God.

7 months later. My baby is back. 7 months.

7 months.

Thank you God. I can never say thank you enough. Thank you. Thank YOU.

Thank you for all my beautiful friends and family who work with us, daily. Who listened to my sobs. Who brought meals for my family. Who prayed. and prayed. and prayed. Who gave up time with their own families to help mine. Who gave to us financially. Who read this blog and encouraged me. Who shared this blog. Who sent me facebook messages. All of you. Thank you.

Maddy is back. She is our miracle. Eva and Maelle have their sister back. Justin and I have our daughter back.

Here we are. all of us. Thank you, Jesus.

1 comment:

  1. I am just sobbing my precious Jana...tears of joy, celebration, relief, praise, love and for so many other reasons!!! I love you all so much!!!!!!! Thank you Jesus is right!

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