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.