welcome back.

On the heels of such great news about our insurance coverage comes other good news. It is news that we were not expecting to hear this soon. News that we hoped we would hear someday...

We are in the middle of the "transition" from Early Intervention to preschool. There is alot of jargon that I will spare you with, but basically the state intervention services stop and the state school system takes over. All of this is federally mandated. So when I say "state" it really is state and federal...but that's really beside the point.

Because of that transition, the school system requires a renewal of all the prior assessments. That means the EI team comes out again with their big bag of toys, along with speech or OT or PT...and they do the same testing that they initially did on your child to see where they are. On top of that, they ask for assessments from any other sources like the SLP they see on a more frequent basis.

Bottom line. It's alot of testing.

So when the SLP came out to reassess Maddy, something was quite obvious. Maddy.

And after her testing, she looked at me and asked, "so what concerns do you have with her speech now?"

And I looked at her and looked at Maddy and I was baffled. "um...none. I mean, sure, it'd be great if she spoke more often in full sentences but she is quickly getting there and she is well within the age range."

Then I kind of stopped. Wait. I have no concerns? No viable major pressing issues?

I thought, wow. How did we get here?

Shortly after their visit, we had a meeting with Dr. MAL. The main issue was Maddy's sleep and how amazing it had changed in the last 2 weeks. Shorten a nap and reinforce a wake up time and suddenly, she's sleeping a heck of a lot better. Wild.

Dr. MAL paused for a moment and said, "I've never gotten to say this to anyone before, but I think it's time that we start decreasing her ABA hours."

Welcome to uncharted territory.

We were just starting to introduce peer play; finding the peers and the times to do it and now suddenly we can take that ABA time and cut it in half and replace that time with functional peer play. We're going from 20 hours weekly of ABA to 10.

She's doing that well.

She has managed to master in a matter of nearly six months what most "good" ABA students accomplish in two years.

Did you catch that?

2 years worth of learning in 6 months.

Dr. MAL has never had a child phase out of ABA like this. Usually, she told us, they are phasing out ABA because the child is going to be starting school and they have to cut back in order to make the time for kindergarten.

She is academically over the requirements for preschool.

Socially...she is learning. And as usual, Maddy is a quick study. We have hopes of potentially letting her "try out" preschool in May for a few sessions at a time.

Now before I get too ahead of myself...let me say this, we're not out of the woods yet. There are still things that we need to work on.

But I can say this...we're at the edge of the forest. Instead of being fully engulfed in a sea of autism, we are in shallow waters with our eyes focusing on the ever increasing shoreline.

To take a child who less than a year ago, would not look you in the eye, would not respond to her name, would not even acknowledge your presence in the room, would never request anything from you....to suddenly a bright brown eyed girl who walks into the room and says while waving, "Hi guys! I'm Maddy!" and "Mama, come here. Open gate. Me in. please."

The last two weeks we have been experiencing "twin moments" to the point where it is almost daily now. Maddy and her twin, Maelle, playing tiny little games together. Making pretend snow angels on the carpet in Maddy's room, doing puzzles on their play table while sharing the pieces, running from room to room while dancing to their little music boxes, and making funny faces at each other in the window at the hospital. Suddenly, this friendship is erupting. Granted, they still fight. ALOT. But to see them socially playing together and finding the companionship of having a twin sister....brings me to tears.

Last Friday I took them into Rehab therapy without the stroller. Without the backpacks. Just two little 2.5 year olds holding each of my hands. And they were great. They walked with me. They listened to me. They took turns going potty. They washed their hands. They walked right with me in all the little steps they had to do in order to get to their speech therapy. It was a wonderful moment. I finally felt like I had a handle on this. This "twin" thing.

That finally my hopes and dreams for my little girls are beginning to form again. It's not that I ever lost them, they got blurry for awhile. They got lost for awhile. I got lost for awhile.

If you can look at all of that and see how amazing she is. How extraordinary her story is. You cannot deny the presence of God in all of this. I'm sorry but you can't. These are unreal results. Unreal. Everyone is speechless. In awe of this beautiful little girl.

She is so bright and so is her future. Welcome back to the world, my sunshine. Welcome back.

take that.

So. This is what has happened.

In September, Dr. MAL came up and put on a workshop to train all of us in EIBI or ABA. Basically she instructed us on what Autism is. What behavioral training is. How to do it and what would be expected of us and of Maddy in this whole process. We watched a video, did some training, and away we went. We knew beforehand that most likely our insurance would not cover this workshop. Typical insurance companies were denying coverage of this and even though she has condensed what used to be a 4 day training session into a matter of 8 or 9 hours, they would most likely not cover this.

We really didn't have any choice in the matter. We could do this and potentially recover our daughter from Autism or watch her slide further and further into her own world and lose our window of opportunity. So we did it.

The bill was sent to insurance and they denied it. Stating: No benefits are provided for this psychiatric service.

Dr. MAL wasn't surprised and nor were we. We had called the insurance company several times BEFORE the workshop asking if this was covered and why not and what could we do to get it covered. They wanted to know her diagnosis. Fine. Dr. MAL gave her an autism diagnosis. And still they insisted that ABA was not a covered service.

So Dr. MAL sent in an appeal. And we waited. And we waited.

Meanwhile, our state is in the process of creating a bill to get insurance companies to pay for ABA. It's in rough form and was approved to go before the state legislature but it wasn't recommended...we're going to fight hard for it but we have no lobbyists and autism treatment is vast and at best, only 47% successful. This might be a long time coming but we will fight for all those families out there who are less fortunate than us.

Then yesterday.

There was a pile of "explanation of benefits" letters waiting in the mail for us. We get alot of them since our insurance company and Medicaid are nice enough to cover Maddy's speech and occupational therapy. I assumed that's what it was.

I was wrong.

There it was. Approval of our appeal and our ABA workshop was paid. In full.

Paid.

I think my hands were trembling when I looked at Justin standing next to me. He wasn't really looking at what I was reading until I said, "no way."

"what?"

"they paid it."

"no way," and he ripped the paper out of my hands to see for himself. Both of us trying desperately to get to the second page for the true explanation of why they had approved the appeal.

The explanation was simple : this claim is being adjusted based on the medical information submitted by the provider.

Did you catch that? the medical information. Not the psychiatric information but the medical information.

Oh...do you say, dear insurance company, that autism is a Medical condition and not a psychological condition???????????

We're shocked. It's not just about the money. We're taking this as a small victory in a huge battle. We can't insight change without support. Sure, the bill was large and we've been fundraising to pay for it and all the other costs that come with a child with autism. But suddenly, it's gone. Paid. Done.

Wow.

This means the next time a family is sitting in Dr. MAL's office and hearing the words "autism" and "early intense behavioral intervention" - they don't need to be quite so scared. They don't need to worry about payment but rather the treatment for their child.

I know that I pick on cancer quite a bit. Sorry for that. It's just the most "popular" medical illness. And while not all cancer treatment is paid in full either and there are steep co-pays and bills, but most families with insurance don't have to face covering all the costs out of their pocket. That is the entire point of having insurance, right? So they can maneuver through this scary process and not be staring at the dollar signs the entire time.

We just took a small step towards that in autism and while ABA is NOT the cure, it is the most successful process at recovering children from autism when it is performed correctly. We (as in the autism community) have miles to go as far as finding cause and proper 100% treatment. But every little step counts.

Every little step counts.

into the new year.

Happy New Year, everyone!

I know I'm over a week late on that. Sorry. But I hope you all had a great celebration and the new year is starting out nicely for you all.

We've returned to life as usual after the holidays. Thankfully, even with the light schedule over Christmas and New Year, Maddy didn't really seem affected. She continued on her upward progress. That's a blessing.

We are charting her sleep - on week 3 of charting so far and there appears to be no major pattern that we're seeing. Though, it does seem that she will sleep slightly better when she goes to bed earlier. We did actually have one night that she slept through but at 2.5...MOST kids should be sleeping through. I know that it's "typical" for children with delays and/or autism to have sleeping problems. But I'm not going to leave it at that. Typical or not, I'm going to do my best to find out why. I don't know if we'll get an answer but there has to be some kind of solution. Not only for myself and Justin, but for Maddy. No one can possibly function properly on continuous lack of sleep. We will meet with Dr. MAL on Tuesday of this week to see what she thinks of it plus go over the progress charts from CARD on how she is doing.

We have finally been through all of the donations through the tree donation in our community. It was humbling to have such an outpouring from the community for us and for Maddy. We have been thrilled (the team included) by all the new materials. Maddy is most excited about the paint - what child wouldn't love to paint all day? Some of the money donations went to organizing her room. Isn't it great?

I wish I had a before picture to show you the less than stellar organization that was going on. Either way, it's been great to have everything organized and even Maddy was happy to see the shelving. The other money donations will go to the CARD Skills subscription, which will start in February at $250 a month.

The gas cards have been awesome. I think I'm most thrilled about the fact that you swipe the card and it automatically fills to the amount on the card. ha. The funny things that thrill you at this point.

But more importantly, all of this has been a true help. Not only with financial means or physical objects, but just to know that there is a community backing us and all that we are doing to improve her life. It's amazing. I don't hope that any of you ever have to go through what we are going through but if you do, I hope you will feel the amount of love that we have. To feel supported in the fight for your daughter's life.

You've all seen the news, I won't go in depth about findings that Dr. Wakefield falsified his findings in the link between vaccines and autism. I've never supported that belief in Maddy's case. I can remember (of what little I do remember of the twins' infancy) the subtle signs when Maddy was an infant that something seemed to be a bit different with her.

We are about 2 weeks from a big change in the team, Miss Melissa - aka the Organizer - will be starting her maternity leave. I wish her all the best and cannot wait to meet little Isaiah! Though I would be lying if I didn't say how nervous I am to be without her for a few weeks. I have great friends and great help and everyone of them has their special task they do for me and when I lose one, I'm lost! So I'm doing my best to mentally prepare myself for losing my right arm again for awhile (haha). And when I get her back, Miss Laurel will be off on her maternity leave (another baby boy that I can't wait to meet!) but I'll get my right arm back in time to lose my left. (And it just occurred to me that Laurel doesn't have a nickname....better work on that. Almost everyone else does...)

But there is prospect of newbies and that's exciting. (Interested in being a newbie? - email me: maddysvoice@yahoo.com or send me a comment on Facebook under Maddy's Voice)

I'm off for now. Just wanted to update everyone about the new happenings. Thank you for all the prayers and support! Love you all.