rockstar.

We are one day from the beginning of Autism Awareness Month. I'm so hyped.

I've been waiting awhile for a FULL month of dedication to Autism and raising awareness. Just when I think everyone on the planet has heard of Autism, I get random comments from people, "What's Autism?"

pause.

So here is an entire month for explanation and awareness.

Another reason why April is so near and dear to me is that, merely a year ago, I called Early Intervention about my concern for Maddy. April 16th, to be exact. It has been one wild year. I had no idea then what I was facing. No clue.

I went back through my emails with my bestie, Deanna, trying to remember what things were like at the beginning. It's kinda shocking because I know Maddy regressed further back than from the time I wrote this email.

April 13, 2010
Maddy.... I've had concerns with her from the beginning...like as a baby because she was never really all that great about eye contact. She was just so laid back and happy that I didn't think too much of it. She is such a busy little thing, independent, and happy. But can be in her own little world too. She rocks and moans...the ped assured me that was normal for kids learning to self soothe...but should she be doing that at the dinner table? She sometimes responds to her name. More times not. She will tune out everything and just stare...last night at the table, I kept saying her name and she would not respond and then I started waving at her and saying hello and soon Maelle started waving and saying hello and then Eva and finally she seemed to come back to us and saw us all waving and saying hi to her that she started giggling. She does point and she does acknowledge when I or Justin walk into the room when she isn't too engrossed in her playing. She says "hi, mama, up, down, ball, uh-oh, and hi there" but that is all. So I'm torn if she's just too laid back to care and I'm being over obsessed or if I'm missing something. Of course I will bring this up to my ped. when they have their 2 yr. check up in June and who knows, maybe in 2 months a switch will go off and they will both be talking up a storm. I can say that she does babble nonstop all day...it's just nonsense words in her own little language...making me feel like once she really gets it, she will never stop talking. Anyway...there was 20 minutes worth of me rambling about my worries.

By the time she was assessed at the end of April, she was not pointing. She was not doing any type of name recognition. She was not acknowledging Justin nor my own presence in the room. Her few words were gone. Gone.

I thought for awhile that Maddy never really regressed, she just stopped. Wow, was I wrong. She did, in a big way, in a short amount of time.

Alot of people tell me "oh you caught it just in time...good job Mom!" but I have to correct that. While, yes, I did have my concerns, it was Deanna who urged me to seek out Early Intervention. And being my bestie in the entire planet, her words were gospel and I did just that. Because, frankly, I didn't even KNOW about Early Intervention and if our state had such a thing.

Clearly I was clueless and my heart aches for all the other parents out there that have NO idea what kind of services are available to them. That is my heart's desire. So that no other mother has to send out that email and have no idea what to do. I knew when I looked at all the red flags for Autism that Maddy was them. Almost every single one of them.

Now.

Now Maddy is an Autism and ABA rockstar. She just is. She has truly kicked Autism's butt. She has given us so much hope. Any diagnosis is not the end all be all. ABA is what Maddy needed. It clicked in her brain. It put things back in her brain. And we are extremely fortunate to find such great people and resources. I have amazing friends and amazing people in their fields working hard for Maddy. An amazing creator guiding us all and giving us the blessing that she is. She is amazing. She is evidence of Him working.

We had a conference call about Maddy's progress with OT this morning and Stephanie said herself that her progress is nothing short of amazing. More astounding numbers and progress. When Stephanie had tested her in January, Maddy was still lagging behind in the OT world. She was, overall, less than 1% of kids her age. She had an 8 month delay, her hand eye coordination was less than 2% and her manual dexterity was less than 4%.

Those words were hard to hear in January. She had been soaring through everything and to hear that OT was still slowly progressing was awful. Stephanie could tell my dismay and reminded me of how hard we had to work just to get the cognition before she could really truly perform these activities. And that made sense. Logically. But my heart still hurt.

She retested her in March. She gained 6 months developmentally in 2 months chronological time. She gained 4 months on her peers and now only has a 4 month delay. This is within normal parameters since most kids have some kind of delay. Her grasping is at 50%, her hand use is 61%, eye hand coordination 41% (remember that less then 2% two months ago) and her manual dexterity is 47% (January was less than 4%). Her overall score is 39%. Amazing when you consider that you want it to be 50% to be considered "average".

Our twice a week trips have suddenly turned into once a week trips to the rehab center.

Suddenly.

We're not exactly sure what switch was flipped in her brain in January, but something clicked. Something happened. Because here she is. Our Autism Rockstar.

If someone sat me down and told me exactly what was going to happen last April, I would have laughed at their face...told them they were nuts...and walked away. If someone would have explained the depths of what we were going to do, I would have been terrified. I think back to July, August, September, October...such scary months. Such dark months. And now....

there is such hope now.

We have swam the depths of Autism, we were nearing shore, and now we are at the shore. Steadily shaking the last drips of water off our skin, as we walk, hand in hand, to the hope of the future.

Are we glancing back?

yes.

Because I will not let any child be abandoned out in that water.

ABA doesn't work for everyone. I get that. But it doesn't hurt anyone either. There is so much to be gained. SO much. If I had done all that work and the only thing I gained was the ability to hold Maddy's hand, I would have done it. No question. I would have done it. And I would do it again. And again. And again. I would do it until....

Please seek out your resources. Your child deserves it. Even if you have to be that loud mouth mom at a conference asking how your child can gain access to that free trial software...do it. Do it. I was that mom. And now this mom is rejoicing.

(Huge thanks again to Dr. Tarbox for listening to this mom and giving her a chance, to CARD, and to the SKILLS people. We heart you all. )

Never. Ever. give up.

If you need help, ask. You are NEVER alone. never.

Puzzled flyer.

HUGE thanks to Kyle for making the flyer for us!! Thank you so much!

updated to add: Location is Cavalier Evangelical Free Church

the funny thing about it.

I miss ABA.

I know. I know. Katt, are you nuts?!

Probably.

Okay, I don't totally miss ABA. I miss the camaraderie that ABA had brought us. My "ABAers" would meet every Monday night. We would have our weekly agenda and all the gab that comes with a group of 8 people coming together, week after week, to discuss one common goal: recover Maddy.

We would gather around my house, or Melissa's house, or the church and talk about our lives, talk about Maddy, and just talk. We had some interesting conversations. And our meetings, regardless of how "short" I promised each one would be, they always ended up being at least 2 hours...if not more.

You see, I love these people.

I love everything about them. I love how they gave up a part of their lives to help me get a huge part of mine back. They would come, week after week, and listen to me drone on about ABA. They put up with Maddy screaming and throwing tantrums at them. They did countless hours in a tiny room with that little girl. They put their heart and soul into teaching my little girl how to make the connections in her brain again. And they all did it...willingly. They cherished their time. They looked forward to their time. They loved on my little girl just as much as her own Mommy and Daddy did.

And now, our meetings are sparse. Maddy still has her sessions and they are peer play themed. Not much instruction is needed at this point. Teach Maddy to keep playing and to play appropriately with other people.

I'm not complaining about my miracle. I'm not.

I couldn't imagine my life without these people. I can't imagine my life any other way.

I just miss them. I miss our Mondays. I miss the closeness of us. I entrusted them with one of THE most precious things in the world. My baby.

Do I miss data sheets? NO. NEVER.

Do I miss having to keep up the insane pace of my genius daughter? Not really.

Do I miss the feeling that I have no idea what I'm doing? I don't know if that will ever truly leave me...but I've got peace that Maddy's ultimate life experience isn't up to me.

And it's not like I don't see my people. They are my best friends. I see them almost every day. I'm just such an emotional person. When I become as close as I have come with these people, I miss them about ten minutes after I said good bye to them. I'm such an emotional person, I was just distraught for days when my favorite television shows ended because I would MISS the characters. Silly. I know. But truth. When I form a connection, it is deep. And this connection is very deep.

I am forever grateful and thankful for my sisters. That's what they are to me. My ABA sisters. (Justin shouldn't be offended since he was the only boy...being that he's my husband and it would be weird to refer to him as my ABA brother)

I am happy to close the ABA chapter. I am. I just don't know any adequate way of thanking someone for helping me bring my daughter back. A simple thank you does not cut it. "Thanks again for that..." sounds ridiculous. Like they picked up Maddy from school and brought her home.

I know that just seeing her be the miracle she is...is probably more than enough for them. But I love them. And I hope they know that. I hope they know that they will forever be a very important part of my life. No matter where that life leads any of us.

Love you guys. I still think we need to get that bumper sticker that says "HONK if you love ABA"  :)

Puzzled Over Autism.

Our 1st Annual "Puzzled Over Autism" event is happening April 30th. Yes, the last day of April, which is Autism Awareness Month.

We will be puzzling for 12 hours straight in raising awareness for autism. Local community people can get registration forms to become a "puzzler" and then ask for monetary pledges for how many hours they will be puzzling.

The symbol for Autism is the puzzle piece, if you are wondering where this comes from.

There will be a Spaghetti Benefit Supper at 5pm that evening to raise money for our medical bills.

If you are unable to attend but would like to donate, you can through this blog or you can email me at maddysvoice@yahoo.com or find us on Facebook http://www.facebook.com/maddysvoice

Thank you for all your support! I "hear" that we've been getting alot more readers than I had originally thought. Thank you for reading and sharing this blog. We hope that in writing of our experience we might give hope to others out there, no matter what they are facing. There is hope. There is a loving God who is always there. Trust in that.

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.