"the epic" thank you!

as the day goes.

Today she danced in the kitchen with her sisters. They chased each other around the room in circles and giggled and laughed. Maddy said, "that looks like fun!" when her sisters first started the game.

Today she was just Maddy.

And while she had the first autistic tantrum at bedtime that she has had in a very long time, it does not overshadow the day.

Today she was just sweet giggly Maddy.

She no longer runs with her arms out in front of her. She runs like any other two year old girl. She ran from her room to the living room and back with Mae-Mae, Mama, and Daddy as we all played horsey.

Today she was happy Maddy.

She sat at the supper table and dabbled with her food like any other two year old girl. She ate. She didn't eat. She sang "bumble bee" with a cheerful tone to her voice. She ate. She didn't eat. She spilled her cup of milk on her lap.

Today she was our Maddy.

the low blow.

It's been a bit of a rough week. I'm just gonna say it.

And while I do not want to spend much time with negativity, especially on here. I do need to address something.

I touched on it briefly in the last post, well, the post before my Christmas letter "dilemma" (which did get written this year and hopefully it sounded nice and thankful and not depressing nor fake).

How do you know that what your doing is actually working?

There it is, folks. There it is. The question that has been resurfacing.

And it should be clear as day. It should be SO obvious that the question should have never left any one's mouth. But objectively speaking, someone walking into our world after not knowing Maddy for the last 2.5  years, probably does have a valid point............if they didn't believe a word that came out of my mouth about how she was.

This is what is so infuriating for me. I do not know a single parent that wishes their child had a disorder. None. No one sits around wishing and hoping for their child to have a special need so they can gain attention. If they do, they should be committed. But I can honestly say that ALL sane and good-intentioned parents DO NOT.

I didn't make up some story about how Maddy was before all of the intervention. I don't feel the need to seek attention this way. I would love to be doing a BILLION other things with my life. Really. I would. I would love to spend a fraction of the amount of time that I do on Maddy, with my other 2 kids. I would love to be able to go places and not worry that Maddy will get overstimulated. I would love to be able to brush Maddy's hair and know that when she tells me "OW, Mommy." it's because it's snarled and not because she cannot stand the sensory feeling of getting her hair combed.

How do I know it's actually working?!

Look.at.her.

Can she answer to her name? Can she make eye contact with you? Can she sit in a room with a bunch of other 2 year olds and make herself undisguisable?

The answer is yes. To all of those questions.

I'm sorry...i gotta let this out. It's been boiling in me for too long. I am trying very hard not to get overly defensive when it comes to Maddy and my role as Team Leader. I'm Mom first and I'm sure that does take alot of objectivity out of it. But I'm not doing this alone. I have 7 other people to make sure that I'm keeping things on track.

I think Catherine Maurice says it best here:

On the one hand, I understood some of this resistance. Anne-Marie was young, we had caught her condition very early, and we seemed to be already turning it around. It was hard for anyone who didn't live with her to believe that there was anything wrong with a two-year-old child who was now combining some words. They had no immediate way of knowing what her history had been, or how far from normal still was her overall social and linguistic development. How could they be expected to know about frequency of spontaneous eye contact, inflexibility of language, paucity of social overtures to people? They judged by what they saw, and to a casual observer she now looked perfectly normal. They thought it helpful to diminish and downplay whatever problem I was rattling on about.

On the other hand, their attitude inspired a certain defensive paranoia in me. Did they think I had made it all up? Yes, life is very boring on the housewife-mommy track. Maybe I'll con a few neurologists and psychiatrists and various other professionals into diagnosing my daughter as autistic. Create a little excitement around here.

Of course, the incredulity I was encountering at this point was nothing compared to the outright skepticism we found as Anne-Marie got better and better. It is impossible. This cannot be. This child was misdiagnosed. Autistic children do not recover.  (Maurice, Let Me Hear Your Voice, 1993)

Completely. Totally. How I feel.

17 years later. 17 years. 17 years?! Are you kidding me? In 17 years we have not progressed out of this? I'm still fighting the same battle that she fought....17 years later.

For arguments sake, are we still thinking the same things about cancer treatment as we did 17 years ago? I'm curious to know. (and really I don't mean to attack cancer. It's a horrible disease. Horrible. So is autism.)

I wish I could scream and shout at the top of my lungs and know that everyone was listening. Why does this need to be a battle? Why can't people just accept the awesomeness of what is happening? Why do they feel the need to argue?

Don't get me wrong, I have ALOT of people who are thrilled, amazed, excited, astonished at how Maddy is doing. I do. And I know not everyone is going to be on the same page, sentence, paragraph, page, chapter, book....as I am. I get that. I also understand that not every child will be as fortunate.

But don't tear down the ones that are.

How do I know that what we're doing is working?

Because I can look at my daughter, she can look at me, I can stroke her hair at bedtime and sing her a lullaby and when I finish, she can look into my eyes, say "nigh-nigh, Mama. Love you."

That's how.

'twas the year 2010.

So we arrived here. At a time that I have semi dreaded for quite awhile.

Christmas Letter time.

Usually I love to sit down and write the Christmas letter. It's fun for me to reminisce on the past year and everything that has happened. Usually, I find myself trying to edit down all the fun things I have to share with family and friends. I don't like to make it longer than a page. I think a page of boasting is enough. More than enough.

But this year....

While we have had some great results in the last few weeks, it doesn't totally overshadow all that has happened in the last year. And there isn't really a way to candy coat having a child diagnosed with Autism.

And I can't really write this:

Greetings! I hope you all have had a wonderful year....because ours sucked.

nor can I write this:

So our youngest twin was diagnosed with Autism in July BUT she's doing so awesome right now that it's really no big deal.

nor would it be right to not mention it at all.

Our past year has been boring. Nothing new to report. The kids are a year older. The end.

nor can I make the entire letter some sap story.

Poor us...boohoohoo.

So here I am. I could totally skip the whole Christmas letter ordeal but then really that would be the same as not mentioning it. I'm sure I'll come up with something. I always do. But it makes it all that much harder. Not that most people don't already know our story...but still.

It seems kinda silly to be so anxious about something as trivial as a Christmas letter, but that's just it, it is the little things that pile up to make everything overwhelming.

In some odd way, thankfully, our Christmas cards are in the middle of some shipping nightmare and after 2 weeks, are still not here. So at least I'm able to put off having to write this thing. Too bad that I know I have to do it.

I'll do my best to be jolly. We do have alot to be thankful for. Really. We do.

the results are in.

We had a meeting with Dr. MAL on Monday. It was one of those appointments where I couldn't wait and yet dreaded it at the same time. She wanted us in the office and requested to see Maddy. Gulp. She hadn't seen Maddy since the ABA training in September and she hadn't had Maddy in the office since the beginning of July. I know that sounds weird for anyone not directly involved but this is quite typical. Most appointments, while they were entirely about Maddy, did not involve her. And frankly, you can get alot more accomplished in a meeting when there are no children present, autistic or not.

She was planning on "testing" Maddy in many of the areas of ABA that she has mastered here for us. And while, I KNOW that she knows her stuff, it's nerve wracking. It's alot for a 2 year old.

Dr. MAL had moved her practice to join a group of psychologists in another building (we'll call it The Institute) and so everything about Monday was filled with anxiety. I had to arrive 30 minutes early to fill out the necessary paperwork, so Justin dropped me off in the middle of Maddy's OT therapy and went back to get her. I sat anxiously in that office for 30 minutes. By myself. The so-called paperwork that I was supposed to fill out had already been filled out when she first moved and anything else that I needed to fill out, the secretary (that's an entirely different story) wanted to wait until Dr. MAL was there to see what she needed. Great. So instead of at least having my husband to wait nervously with, I was alone. Staring at the decor. (Just think scary psychology offices from the 80s and you will picture where I was sitting)

It was like I could feel the clock tick every second away.

Finally I heard the rambunctious squeals from Maddy in the hallway and then walked in Justin and Maddy. A very nice distraction. Then Lori came from EI. Whew. My reinforcements have arrived. The secretary then handed me a 5 page document to read and sign................

Sigh.

Dr. MAL's office was nice. Nothing like the lobby. Very warm and comforting. There was a little playhouse on the floor for Maddy to play with and another big wooden activity block. She happily sat down on the floor and picked up the dolls and began playing appropriately with them. I followed Dr. MAL's eyes as she watched Maddy and I could see that she could see what we are seeing in Maddy. Relief.

I think I could write books about how that meeting went but the basic synopsis is that Maddy's progression is not typical. Not. At. All. She is progressing so fast that we are all astonished. Dr. MAL didn't even bother "testing" her because of how well she was interacting and playing in the office during our meeting. At one point we were talking about introducing foreign languages.

Stop.

There is no way in July that I could have imagined that we would be discussing foreign languages in November. No way. Maddy has only been doing ABA for 2 months. In 2 months' time, she has gained amazing eye contact, answers to her name, can follow basic instructions, can imitate, knows her body parts, can identify (with pointing and speaking) 9 different colors, understands verbs like running, kicking, crying; requests things, plays with her sisters, can identify basic nouns like cat, dog, car; gives hugs, holds hands, gives kisses, and is starting to ask questions like "how are you?" "Okay, Mama?" "where is green?"

At the end of the meeting I asked Dr. MAL if she would reassess Maddy. She said she will in March.

In many ways, I know that she will not meet the criteria for autism in March. Will she still have a diagnosis of PDD or such? Yes, most likely...but not autism. Not that anything will change yet. We have alot of work to do and we will keep doing it, regardless of criteria or not. But it's outstanding.

Phenomenal.

We've been sharing the news intermittently with people and while everyone is super excited and thrilled for us, there is a subtle, underlying question that a few people have asked.

So...was she misdiagnosed?

NO! I know many people that ask this question do not mean anything by it. They just want to make sense of things. I can understand that. Heck, I think I probably would think that too if I wasn't directly involved.

But no. She was not misdiagnosed. And in assuming that, that belittles every single thing that we are doing. In ABA, in speech, in OT, at home, and in prayer. No. Maddy has Autism. When I started all of this in April, I knew in my heart every single red flag. I could read books on other children with Autism and it felt like they were writing about my child. Dr. MAL is highly qualified to make the diagnosis. She studied under many of the pioneers in Ohio that are still working very hard to continue what Lovaas did.

God is working. In all of us and in Maddy. I firmly believe that. Saying that her diagnosis was human error, belittles Him too.

But this is psychology. There is no medical test to confirm autism. No extra or lagging chromosome. No blood test. No definite. There is always room for interpretation and it will probably always be there.

Is she recovered?

No. Not yet. Who knows if and when. She is still very much behind her peers on several aspects. She is gaining. Her exponential growth speaks volumes but unfortunately, that is what is required to catch up with a group that is also growing volumes every day.

We have alot of work yet to do.

So what are you saying?

I'm saying this: ABA is working. Speech is working. OT is working. Prayers are being answered.

That is what I am saying.

It's working.

keep on.

"A gap in time but not a gap in progress"

Maddy was a pirate for Halloween. Ah, Halloween. One of those holidays that every kid cannot wait for. Eva was a snow princess and everyday of October asked me if it was Halloween...yet?! Maelle was an Eskimo and while she had minimal concept of what actually was happening, she tagged along to whatever her big sis was doing.

And when it came to dressing up Maddy, I was lost. A bit hesitant. I didn't know what exactly she would tolerate. I had a half a dozen costumes from dress up clothes, prior Halloweens, friends, and even bought a new one in hopes that one of these would do. I did not bring out the pirate costume as Eva had been a pirate the last 2 holidays and I was tired of seeing it. She probably would have been it again if I hadn't told her "NO!" back in July when most kids (at least mine) start thinking about the candy holiday.

I had a black cat, a candy corn witch, various princess dresses, lion, cowgirl, chicken...and while I grabbed a turtleneck to put under Maelle's costume, Maddy snatched up the pirate hat from the dress up box, put it on her head and came up to me saying "RRRRRR....mateys!"

So I caved.

And she was the best pirate ever.

She didn't really understand the concept of trick or treating. After 4 houses she was done with all of it. She kept looking at us like why can't I go in the house? Why do I have to keep getting in the car? What is the point of all of this? Making me think we should have practiced this before doing but oh well. Thankfully at 4 and 2...trick or treating at 4 houses is enough for them. Next year will be different.

On Tuesday we had a phone conference with the OT and SLP therapy team that we see twice a week "in the city". It went well. It is quite obvious for everyone involved that Maddy is growing quickly. A blessing we can't even fully describe. They aged her developmentally between 2 and 2.5. She will be 2.5 on December 2. And she had spikes well above 2.5. We were/are in a bit of shock. Somehow our daughter has grown 9 developmental months in 4 actual month's time.

We can see it. But we also see how much we have yet to do. Yet we are thankful for every improvement. Every step and developmental milestone. Holding hands. Requesting things. Making eye contact. Understanding and preforming simple commands. Hugging. Singing songs. Forming sentences. Drinking from a glass. Using her fork. All of these "normal" things are so incredible to us.

When I think back to when Eva was 2 and how I, then, happily bragged at how advanced she was for her age, it makes me want to vomit. Really it does. Not that I shouldn't share my child's accomplishments but rather, that I thought they were some kind of reflection of me and my parenting. I didn't see the blessing of it all. Sure, my parenting style has evolved since adding the twins to the mix but I didn't raise Eva and Maddy much differently. No, I couldn't devote hours to sitting on the floor learning baby signs with Eva to Maddy or Maelle...but I didn't neglect them either. That's just the nature of the child. Some learn quickly, others are average, some are slow, and some struggle. But autism isn't learned. It's not a matter of spending more time with the oldest and less with the youngest. Yes, I did devote alot of time to teaching Eva and she is very independent but that is her...and her accomplishments, while they are great, are not because I'm a superior parent. Just like Maddy's accomplishments are a result of hard work and prayer, but not because we are somehow superior at any of this. In fact, I very often feel quite lost and inadequate when it comes to the task at hand: "operation: recover my daughter from Autism".

We had a stomach flu go through the house a few weeks ago and now we're dealing with a croup like cough with severe ear infections and sore throat. It makes me frustrated because we losing time in the therapy room and also because I'm tired of seeing my babies sick. There have been some slight regressions...she definitely rocks and groans more when she is sick. We had almost thought that behavior was gone (minus bedtime where it is still quite prevalent) but it came back like an old nemesis the minute she got sick. Sigh. She started turning the wheels on the train toy more than pushing the train around.

And yet. Today while she was playing with the Dora schoolhouse, the door was missing. So came to me and said "door on please." At first I didn't understand what she was wanting - her articulation isn't the best (she is still 2) but when I finally did, amazement. I acted like it was normal and began rummaging through the toys trying to find the door. Maddy then started saying "where door?" to which, I would say "yes, I don't know where the door is. let's find it!"

I think I looked through every toy box I could find. It was probably some 20 - 30 minutes later before I finally did find that door. She had moved on to playing with something else. I walked into the room and called her name while holding up the door to see her reaction. (remembering how awesome it is that I can call her name from across the room and she will recognize that it's her I'm calling and respond). She turned to look at me and when her eyes glanced to what I was holding...instant recognition! She smiled and said "yea! Door!" She ran over to the schoolhouse and said "please" while she waited for me to put it back on.

That dumb door fell off another 900 times in the 5 minutes she played with that toy but each time she would bring it to me and wait for me to put it back on the house. Normally such a task would become quite annoying but in the context of how amazing all of it was, it was fine. I will keep putting that door on if she keeps asking me to.

As long as she keeps asking.

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.

hewo baby.

Anyone who knows me knows that I do not like long gaps between postings and I feel like it has been a long gap since I actually posted something with substance. Not that the last post was worthless...it's very important stuff...but I didn't write it so it was kinda informal. Very "AUTISM" activism related and not Maddy related. I'm all for both on this blog but within reason.

Suddenly not only did we become parents, teachers, and now we're activists too. I shudder to think of myself as an activist. If anything, I've always been kind of an anti-activist. Not that I don't stand up for things but I'm not a "throw it in your face" type that the word "activist" implies.

Justin has been doing most of that anyway...writing and calling representatives for our state legislature to mandate that insurance covers Autism treatment. Because our state does not mandate it and thus, our insurance does not pay for it. I've never had a big beef with insurance companies (always thought they were alright to me) until now. Until the day that we get a huge bill in the mail with a little note next to the amount saying the insurance won't cover it because it "does not cover this psychiatric treatment" which to me is a bunch of crap. This same state insurance will pay for people to quit smoking but it won't pay for my baby to have the treatment she needs to rewire her brain to become a functioning member of society. stupid doesn't cover it.

I digress.

We are in Week Two of ABA (or EIBI...whatever, it's the same thing) and so far so good. This week has probably been more chaotic than last week, which I'm sure last week I would have never believed possible. But it has. And we're making adjustments and going with it as much as we can. That's all we can do.

Maddy is doing well with it. She isn't nearly as resistant as I thought she would be. If anything, she's bored. We're doing our best to integrate what she needs to learn with the basics and trying to be as overly exciting as we can possibly be. She loves to sing "I did it! I did it!" when she does a certain task right and that is probably the cutest thing ever. I will post some video on that soon, I hope.

She is doing well and so far our learning curve has been a steady slope upward and not any real dips down or backward...though I know they are coming. They are bound to happen. And I hate to say it, but I fear it. I try not to, but it would be impossible to NOT fear regression. Heck, I feared regression when Eva was potty training...and that is a tiny ant hill in the mountain of teaching a child how to embrace the world around them with ABA integration.

On Monday we had a meeting with Early Intervention and a local foundation that will be providing someone to come help us out 20 hours a month...with Maddy. Basically helping us with her. Taking her to the park or helping me take all of them to the park or what not. Anyway, Melissa was here with her little boy (who is just under 2) and Maddy saw him playing with her toy phone. She walked over to him, leaned over to get close to his face and said "hewo baby!" She attempted eye contact and an overall greeting to a boy that she sees fairly often. So amazing. A few months ago she would not have even noticed him or she would have ripped that phone out of his hands. But instead, she looked like a little adult...crouching over and saying "hewo baby." and waited for his response.

Those things make me smile. Justin took her to OT and Speech on Monday and her OT therapist was the same one who had done her eval back in July. She had not seen Maddy since July so she was shocked when she saw her on Monday. Literally shocked. She could not even believe the changes in her in the 2 short months since she has seen her. Justin was so excited he rushed off to buy me flowers....only Target didn't have anything other than Mums so he bought me two donuts...lol. What a good man, knowing that I would rather celebrate with a donut than a Mum. Though roses would have trumped donuts, anyday. Another time.

Last week she started saying "Where are you?" She would stop what she was doing and look up and say "mama, are you?" and look around. Now she says it with anyone or anything..."Milk, are you?" "baby, are you?" "dada, are you?"

I could cry. Really. Not that it's overly sad that she is missing something but that it's exciting to know that SHE KNOWS she is missing something. Again, a few months ago she didn't have the awareness to think or know that anything was not there to be missed.

It's not to say that it's not frustrating. It does get frustrating at times. I think she's approaching 2 developmentally...in alot of aspects she is past two but some she is not. And it's exhausting. Though we see her improvements...the tantrums are wild and full force. She hits, she bites, she throws herself on the floor and cries, and she still rocks and moans. I feel like I've had a 1 year old forever. I shudder to think back to when the twins were infants...months old and how I couldn't wait until they were 1 and walking. Oh i could wait. Really. And i just want her to be 28 months...whatever that is. She is certainly gaining the vocabulary...she has surpassed Maelle when it comes to talking but her comprehension has not. And oh what I would give to be able to say "give me your hand" and have her willingly give me her tiny little hand and hold it. I have never been able to hold her hand for longer than 5 seconds without her pulling it away or trying to bite me. I know she doesn't feel her hand being held the same as any other child but I hope someday she might. I really just want to walk hand in hand with her.

You just don't realize how important those little things are until they aren't possible to do.

But one thing at a time. As I type she is sitting next to me on the couch, having woken from her nap, she walked into the living room, turned the tv on, and hopped up on the couch and is sitting 1/3 of her tiny little body on mine so she can be next to me while she watches Word Girl. Happy. Content. One of the characters on Word Girl just tipped over something in a cup, Maddy said "Opsie!" and looked at me to see if I saw what had happened. And then giggled.

That is amazing.

She is amazing.

In the news.

Advocates Want ND Insurance Coverage For Autism


by (AP) BISMARCK, N.D.

Published: Wed, September 22, 2010 - 6:40 am CST

Bismarck, North Dakota - North Dakota's Legislature should require insurers to help pay for treatment of children with autism, advocates say.

Autism is a brain disorder that affects a person's ability to relate to others, and affects children in different ways. Experts say childhood therapy for autism spectrum disorder is important, but extensive behavioral therapy can cost more than $70,000 for a year of treatment.

A North Dakota legislative committee is considering a bill to require the health insurance plan for state workers to cover treatment for autism disorders. The committee's chairman, Rep. Bette Grande, R-Fargo, said the panel will decide in October whether to recommend that the Legislature approve the idea next year.

An analysis by Deloitte Consulting LLP estimates the mandate could increase the state health plan's expenditures by almost $3 million annually.

Nicholas Gates, a Dickinson police officer, asked lawmakers on Tuesday to support the measure. He was accompanied by his 8-year-old son, Noah, who stood shyly by his father's side and said little. Nicholas Gates said his son was diagnosed in late 2005.

"When Noah was first diagnosed, we were very overwhelmed. We didn't know where to turn, especially when we were told that our son needed specific treatment, and we weren't able to get that because our insurance company would not cover it," Gates said. "We were able to get some therapies ... but we were unable to get the social and behavioral therapies that Noah required."

The federal Centers for Disease Control and Prevention estimates that one in 110 children has an autism spectrum disorder. In 2006, the average prevalence for 8-year-old boys was eight per 1,000 children, the agency said. The spectrum occurs more often in boys than girls.

At least 21 states require insurers to provide treatment for autism, according to the National Conference of State Legislatures.

Maddy's Voice note: help us by contacting your local rep or Rep. Grande in Fargo and telling them to approve this measure. Millions of dollars are spent helping drug and alcohol addicts who choose their behavior and nothing is spent for children who are BORN with Autism. Remind them how much money WILL BE spent if these children do not recieve the treatment now and end up being institutionalized for the rest of their lives. These are children. Innocent. Beautiful. CHILDREN.

Where have we gone as a society if we abandon our children? By not covering their treatment, are we not abandoning our children and their families? Give them a chance. To live in happy awareness of the life around them.

humbling.

We had Maddy's EIBI workshop today and while I have loads to write about...I do not have the mental capacity to write anymore today.

I did want to quickly comment on how humbling it is to be in a room full of people devoted to helping your daughter. People who are freely VOLUNTEERING to work one on one with your child. To help her. To love her. To see her thrive. To help us help her. To help Maddy shine.

I don't know if any of you have ever been in that kind of situation. The kind of situation where you find yourself unable to truly do all that is asked of you so you must reach out for help. And to need people volunteering their time as there is no way you can pay all your medical bills, let alone pay people to do therapy for your child. To ask for help and then see it unfold.

It's very humbling. It makes me want to cry.

I have never felt so loved in my life. Ever.

To look around a room of 15 or so people and see them truly devoted to helping Maddy. Helping YOUR child...to see them smile when she smiles. To see them relish in the light that Maddy is. They know she is going to throw tantrums and be difficult. To sacrifice that time they have with their own families to help yours.

Time is a sacred thing. Everyone wants more of it.

Yet time is of the essence for Maddy. And to see these people gearing up for battle. Them vs. Autism. Bolding going into a land of unknown to bring your daughter back.....

it's speechless.

it's breathtaking.

it's love.

And when my daughter, my beautiful Madalynn, is recovered...I can never thank you enough. For giving me my daughter back.

May we take this love and let it grow. Let the world know what love looks like. It will take your breath away.

quick update

The gap in writing is not due to lack of content but more lack of time. Things are only going to get busier from this point on but I'm hoping to get into a routine and I can maneuver better.

My two oldest girls (by seven minutes...woo) started school today. It went pretty well. Maelle has some learning to do...but she is 2 in a 3 year old class so hopefully she will catch on and things will go okay. If not, we'll have to rearrange some child care but for now, it works. We have a bit of time before things truly start so we'll see.

Maddy is doing fairly well. We have started up her Speech and Occupational therapies...right now she goes once a week but by the end of the month she will be going twice. Early Intervention comes weekly. And Monday we have the workshop for EIBI which will start daily after that.

She is starting to put more words together and repeating a bunch. Even repeating actions. She is still rocking and groaning when she can fit it in...but thankfully she is lessening that and knows that I won't let her do it...so many times if she is doing it while watching a tv show, if I sit next to her then she won't rock. Not that I have all the time in the world to watch Word World or Sesame Street but at least she is stopping. Hopefully she will stop all together or at least I can create more distance from her so maybe if I'm in the room then she won't rock or she can see me then she'll stop...until maybe she will stop. I hope.

She went on a hike with Justin today while I was at the church getting her room ready and making sure the girls did okay at school. Justin said she had a really good time. He would ask her if she was okay and she would say "I fine" - very nice.

A couple of days ago she put her hands under the faucet and asked "wash hands?" I think this is the first time she has requested something...let alone with words.

We had our friends over tonight for supper and Maddy enjoyed all of it. It is nice to see that her bubbly outgoing self has not been affected. Eva and Maelle have always been such shy girls that it's great to see one that thrives on new people and new surroundings...so "non autism" - she truly is an amazing girl.

Consider this my short and sweet update. I'll write more soon. Off to bed.

watch. this.

the waters edge.

We took the girls to the beach for the first time last week. Correction, we took ALL the girls to the beach for the first time. Both Eva and Maelle had already been to there but I  we hadn't been brave enough to take all three girls at once before now. The idea of the twins around a body of water with only "zone defense" parenting was never appealing to me. My brain works against me, most of the time.

But Justin got it in his head that we could do this and then invited our friends and their kids over for a day at the beach and on the tiny little sailboat that we own. Being that it is late August, I figured now was the time. I couldn't really avoid it much longer - I have seen snow in September here, after all.

So off we went. Life jackets and Mommy's paranoia...to the beach!

Side note: our "beach" is but a small one on a lake that would be considered small to most people...even most landlocked folks like us, consider this a small lake. Given that at one time, Justin and I lived on the eastern shores of Lake Michigan, yes, this is a tiny dot in the lake chart. BUT it was a body of water...a large body of water compared to my tiny 28 pound Maddy.

Eva and Maelle were very much at home at the beach since they had been there before. Maddy was quiet but excited. She walked right down (with her monkey backpack and me close at her side) to the edge of the water and watched the tiny waves for a few seconds and then wanted to continue in. She didn't make any sounds at first...just quiet observance.

She loves the water to begin with so it was no shock that she just wanted to walk right in the lake and keep going. I corralled her back to the beach to switch out her monkey backpack for her life vest. She played the morning away on the beach and in the water with me by her side. She learned the word "castle" and on her own, she would shout "SWIM! SWIM!" when she was in the water. When she saw Daddy and Bill on the boat, she wanted to literally walk through the water to it.

She ate minimal sand, so that's a plus. If you don't know, Maddy still very much likes to put everything in her mouth to taste it. She seems to love dirt, sand, and chalk the best. Gross, I know. There is a syndrome called pica that involves eating inedible things. It does follow some kids with autism but at 2, I think that a pica diagnosis is a bit inappropriate. She is aged developmentally 15-18 months (with peaks at 24 months) at this point...and lots of 15 to 18 month olds still eat everything.

She seemed to like the sailboat. Mommy sure didn't. As we shoved off on the tiny sail boat on the tiny lake...I looked at my kids...4 and 2 and 2. Okay, none of them can swim. I doubt that even my 4 year old could tred water to keep her head above. And there are 2 adults. I don't like those odds. YES, they all had life jackets on but still. My anxiety was at an all time high. I had visions of Maddy climbing out of the boat, Justin diving in after her, thus knocking the boat off kilter so it dumps the rest of us out. I would be in the water trying to keep Maelle and Eva afloat along with myself??? Then I just told my brain to shut up! 

We did well until Maddy did start to climb out of the boat and I gave Justin that look that says GET US OUT OF HERE. Only we are on a sailboat. And suddenly the wind died. Oh God. Okay. I'm supposed to trust Him. So I stopped panicking and became Distracting Mommy.

"Does anyone see a bird? Let's look for a bird," as I overly gestured.

Looking in the sky there was nothing. Come on....there has to be a bird. I need a bird. I need some kind of distraction while we wait for the wind to come up again. Then suddenly...in the middle of the lake there was a hummingbird. A hummingbird? In the middle of the lake? Yep.

When we moved here...in the midst of my 2nd bout of postpartum depression when the twins were infants, I often would look out the window in hopes of seeing something uplifting and there was always that "same" green hummingbird to greet me. I don't know the life span of hummingbird (wiki says 3 to 5 years) but the symbolism was outstanding. Whenever I seemed to need some kind of uplifting assurance...there was a hummingbird. And there she (or he?) was again. I don't know if hummingbirds usually fly across the lake...maybe they do...but this one was so close to us, literally we could have reached out and touched her.

The wind picked up and off we went back to shore. Safe. Sound. Land.

Maddy and I walked the beach some more as I soaked up her tiny innocence. She was quiet and I wondered what she was thinking. If only I could crawl inside that little brain of hers and see what was working in there. If I could just go in and see what she sees. Hear what she hears. And KNOW that she was ok. To KNOW that someday we would be walking this beach and she would be running and laughing and telling me about every new thing she found. To bring me buckets of sand with her sisters and say "look Mommy! Look what we made!"

I don't want to put a damper on a great day. It was a good day. It was a stressful day for me but for every other player, a great day. That's what I wanted it to be for them. Just a fun day at the beach. With no care in their minds. Just fun. Happiness.

The thing about becoming a mom is that you can lose that innocent fun. You can wrap yourself very tightly in a web of worry. A web of unknowns. There are no crystal balls. We don't hold the future. We are intrusted with these tiny beings to protect, nurture, and love. (I mean dads too...I'm not trying to exclude you men)

On Friday we had our first therapy day "in the city". It was a good day but a hard day. The twins had a good time. Maddy did the best with the new surrounding. Despite her autism...she adapts to change just fine. She doesn't like the transitional change from activity to activity but as far as daily schedule goes...she is VERY adaptable. She loves to go places and see people. LOVES it. (so non autism there) Maelle is shy. She didn't like it much.  But she did well...she went with the SLP (speech and language pathologist) and I sat in the waiting room taking it all in.

There were all sorts of children there. Mentally handicapped. Downs. OCD. Some appearing to be spectrum kids. Two girls struck me...while they were 8 or 9 from their outside features...they seemed to be functioning around 2 or possibly 3. I don't know if those girls were spectrum kids or not. It's not like picking out veggies...spectrum kids are as unique as their fingerprints. Either way, it was eerie to watch them. Not that they were eerie themselves but just the gravity of everything. The weary parents were talking to the therapists about pool therapy. The parents looked exhausted. They looked how I felt.

I looked at my borrowed People magazine trying not to be that annoying onlooker gawking at them. I wanted to cry. I imagine that was how parents of newly diagnosed cancer kids felt when they toured the cancer unit of Mayo clinic. This shock and awe type feeling. Not that those amazing kids were scary...just the situation was. The reality was. Wondering if I was going to be them in 6 years. And some new mom will be sitting in my seat trying not to burst out in tears.

I don't know. That's just it. I don't know. And I kept looking at these new therapists like "are you really good enough for my Maddy? Are you the most qualified person I should be working with? Is OT really going to help or will it be a waste of my time? Speech play therapy? What is that? What are you doing that I'm not already doing at home? Don't you understand???? Doesn't anyone understand this? She is wandering farther and farther into the lake and pretty soon I won't be able to reach her...she's on the beach with her toes in right now. We gotta turn her around. Turn her from those dark waters. wrap her in our loving warm arms and run. RUN. Thinking...that was so close. We almost lost her!"

Autism is our modern age epidemic. It is. 1 in 91 kids have it. In some form. And while it is so common. The treatment is not. I asked the OT therapist (I don't even know what her name is..how bad is that?) what exactly she would be doing with Maddy and she gave me some vague response about working out her sensory issues. I nodded but thought "huh?" I should have said...no...what are you DOING. Like the actual activity. And maybe that's what will come out of my mouth on Friday when we go again. I'm not saying that OT is worthless...i just want to know what the heck it is. And what are the goals. Fine motor skills. Okay I get that...she does have problems with her hands....sometimes it seems like she doesn't know what to do with them. So how do we fix that? Tell me HOW.

I think the problem is that we went from no one hearing of autism to now everyone hears it. The problem is that most of us still feel like we are alone in this battle (I mean as parents, I have a wonderful support group of friends that are with me through this) - if it is so common, where is everyone else? Ashamed? In denial? Embarrassed? Where are you?

I believe that autism is a medical disorder. Not a mental disorder. For whatever reason some wires get crossed in the brain and the child just stops developing or regresses. Maddy hasn't regressed...she just stopped at 15 months. Just stopped. So there is nothing embarrassing about autism. Is cancer embarrassing? I don't think there should be any differential. Instead of having a brain tumor, she has a brain connection problem.

I had a great friend (actually ex boyfriend) in high school who had brain cancer. He was an amazing person. He was exceptionally smart. He called his tumor Betty. He had great humor about it...he knew he wasn't going to make it but he was gonna LIVE. He was going to do everything he could to fight Betty (including two brain surgeries) but he would not hide it. He was not ashamed of it. He knew it was awkward for people to except his boldness about his cancer but he didn't care. It was part of his life. It did not define him...just a part of him.

If he were living, he would tell me to march forward to find Maddy. To recover her the best we could. To never let the autism win. To never be ashamed of it. To never fear it either. Autism does not define Maddy. It is a part of her life...whether it remains to be a part of her life for her entire life remains to be seen. I will not give up on her. I will not hide her either. She is an amazing sunshine of life. Radiant and beautiful.

Autism is dark waters. I feel like I'm trudging through a thick cloud of therapies and remedies and experts...trying to decipher what is best for Maddy. Thank God for her light. She is so bright.

beginning scheduling.

So we finally heard back from our hospital and our Speech and Occupational Therapy is now scheduled! I could not be more thrilled about this! FINALLY! I feel like I made into the cool group or something of that caliber to finally have a set schedule of Maddy's non home based therapies.

There was a lot of scheduling to be done in order to fit Maddy's therapies back to back and to fit Maelle in there once a week for speech as well...and at the same time so we are only there for an hour...yes, 3 hours of driving for an hour of therapy....crazy right? But we're doing it. That's all there is to it.

Monday - Maddy will be doing her own ST and OT on Monday mornings and after thinking about it, Justin decided to take a half day on Monday and take Maddy to therapy on Monday mornings. I am willing to do it myself...even if it does mean leaving at 7 am....but I was very upset about having to give up my Mommy Bible study on Mondays. I know...in the grand scheme of everything, it may seem minor...having to stop going to bible study. Yet, I was heartbroken about it. I love those ladies and I love having that time to focus on ME and my relationship with my creator. And I can't be the sole therapy lady...it seems fair that one of us goes once a week and I'm not going twice a week all the time. It also means that most likely Maddy will nap on the way home and I can do her EIBI therapy in the afternoon while Maelle naps. Eva....I'm thinking about maybe she could take that time to spend with her great grandma, but I will need to check with her for that. I'm sure when Maelle gives up her naps in the afternoon, this will change...but for now that seems to work.

Tuesday/Thursday - Maddy will have her EIBI therapy from 9 to 11. I will need either a therapist or childcare those days...

Wednesday - We have Early intervention at our house at 10:30 so it looks like maybe we'll just have an hour of EIBI in the morning before Lori comes and possibly doing something in the afternoon after nap time...I'm not sure yet on Wednesdays. Possibly doing a 2 hour block after 3pm??? I would need a therapist or childcare from 3-5 then.

Friday - Both girls have speech and Maddy has OT - we will be gone roughly 9:30 to 1:30....the girls will nap in the car those days, I would imagine. So I would need a therapist/childcare from 2 to 4. And possibly someone to take Eva those mornings...she can come with, but you can imagine how boring of a trip that would be weekly for her!

The weekends, we will handle on our own....unless there are some of you who want to help and can only do her therapy on a weekend...we'll take ya then. I know for many the weekend is family time so I understand.

So email me....facebook me...comment...let me know if you can help or if there is another time that you can help or what not. I know alot of you have offered to help me...here is the childcare/therapy section of our support group. I will put up a weekly calendar once I have things more concrete. The EIBI part will obviously not start until after the workshop on the 13th. BUT the ST/OT part of therapy starts this Friday... The Monday speech will not start until Sept. 20.

To clarify...I need potential childcare for Eva on Fridays now until mid-September when everything else starts up too. Also, I need childcare for Monday Sept. 13. - ALL DAY for the workshop.

Also if you want to do childcare but can't commit to EVERY Thursday...we could potentially do a rotating schedule where you would only do it every other Thursday or something of that nature...if we get to that point, I'll probably ask one of you to schedule that for me as I have a billion things on my plate...anyone LOVE to schedule? lol. I need you. Whoever you are.

Okay....so that's that. I don't think I made any sense.

On a good note, we were in "the city" (as I don't want to specify where...this is the Internet after all) today at Target . Maddy was sitting in her double stroller with Maelle when suddenly I saw her start to gesture with her hands and then say "roun n roun....roun n roun" - totally singing "the wheels on the bus" - something that I have been singing to her all week after supper. She did the entire hand motions with me and Eva!!! On her own! I can't tell you how awesome it is to hear your child sing a song for the first time. While all she sang was 'roun n roun' - it was great.

So great to see her so connected.

I got this.

Yesterday was a bit of a break through day. When I look at it, last week was a breakthrough week. On Tuesday she began saying "oh no" when her shoe came off. By Thursday she was saying "Oh no, my shoe!" and by Sunday she said this: "oh no, my shoe come off!" An entire six word sentence. And she did it not once but twice so both Justin and I could hear it. And we did.

No fluke. A real sentence.

Then in the moments after her shoe came off the first time, she did something even more amazing than that. I know...a month ago that sentence would have been unheard of and so would have this:

So Maddy was up during nap time since she had napped earlier in the day. Just Eva and Maddy were up playing and Maelle was in her room napping. After an hour and half into her nap, she started crying. This isn't totally unusual. I'm sure she just lost her Nuk or something (yes, my nearly 27 month old twins still use pacifiers to sleep...shoot me. But Eva used hers to sleep with until she was a month shy of 3...and she's fine.) And I normally just ignore her and she will put herself back to sleep. Only this time....this beautiful time. Maddy heard her. And she became alarmed that her sister was crying in her room. She stopped what she was doing, looked at me, I acknowledged that I heard it too, she walked over to Maelle's door and began to gesture to me that we should go help Maelle. She said "open" when she got to the door (open is a famous word in our house these days) and waited for me to open the door. So, I did. She ran into the room...yelling "HI!" as if to save the day, found Maelle in her toddler bed, ran around to the side of it and noticing that Maelle had her Nuk, she pointed to it and said to me "baby".

Wow.

That series of events, while seemingly normal for any other child, are HUGE for Maddy. HUGE. Like Mount Everest huge. To show how huge this is...let me break it down. Not that I think you are too dumb to figure it out but for my own mind...here it goes.

1. she HEARD maelle cry. Alot of time ASD kids with hearing sensory issues cannot pin point one sound to the next. To them it is a jumbled mess of noise all at the exact same frequency. While you and I might hear a soft baby crying and a loud squeaky toy...she hears them both at the same level. So she had to pick out Maelle's cry from all the other things going on in the house.
2. She stopped what she was doing. Because she hears things the same level - it all becomes a blur that she can easily tune out. But it appears that by our persistence to make her part of our world instead of hers, she could assess that Maelle's crying was something different and she needed to do something.
3. She looked for me. She recognized that I am Mommy and I can help. That when someone is in trouble, Mommy should be told.
4. She went to Maelle's door. She could tell that her sister was not in the same room with her so she followed the noise to the source.
5. She asked to open the door. She vocalized with the actual word that she needed something done for her.
6. She ran in to save the day. By her smiling and saying "HI!", in her mind, would help her sister feel better. She was considering her sister. Something I have rarely, if ever, saw her do.
7. Seeing the nuk, she identified it as a object that a "baby" would have and she saw that her sister was, in a sense, pretending to be a baby.

Huge. I have probably never seen Maddy show any concern for her twin. Yes, as an infant, I could tell that they could pick up on each other's presence when they slept together or were on the same play mat. But as infants, they don't really show much concern for the other. Maelle did start to cry when Maddy did but...heh....Maelle is a bit of a jealous child. Sorry, honey, you are.  And she tends to copy what ever will get her the most attention. I love Maelle, don't get me wrong, it's just the nature of being a child.

So the fact that she did those entire series of events shows me that she is becoming more of our world. She is plugging in to us and out of her autism world. I could cry. If she did nothing else, if she reverted back to her own autism utopia...I know that she was here. We had her. I'm gonna do my best to keep drawing her out and with us. She can do this.

When we made the decision to switch therapists for Speech and I wrote about how horrible making decisions were, I had the underlying theme that I had no idea if I was doing the right thing. I had told Justin and my friend Laurel that it's not like life is a game show where you get this instant response. There are no flashing lights and some fake announcer voice booming into a microphone, "Congratulations, you have made the best choice....Johnny, tell them what they've won!"

It just isn't like that. And maybe in some ways I was asking God for a sign of some sorts. A kind of reassurance that we were doing what we were supposed to be doing. And I think I got it.

There is alot of ideals out there on asking God for signs and reading into things....I'm not going to get into that. I am going to say that I did feel His presence yesterday when she was with me. I did feel a sense of "relax, my child, I got this. Look at her. No...really...LOOK AT HER. Trust Me, I got this."

Even when our news isn't always so great. I feel peace. Today we found out that Maelle will not be able to go to preschool because the teacher had lost her helper. I know she felt really bad about having offered to help and then having to back out of it. I was a little saddened but I understand. I feel for her more than anything. It does kinda bring me back to square one as I thought I had 2 days of childcare taken care of while I did Maddy's therapy but that's ok. It will work out somehow. I don't know how. I have entirely NO clue. But it will.

For a moment I flipped out this morning as I lay in bed protesting that it was Monday morning, worrying about child care when we have the EIBI workshop at the church. Everyone I know who usually babysits for us will be at the training...and it's an entire day. My grandmother offered to watch them at the church but the ENTIRE day? I can't have them there all day long...that just won't work. But then I just stopped. It will work out somehow. It just will. I don't know. I have NO clue. But it will.

So while there a billion unknowns...I know there is one thing I am sure of. He's got this. No matter how it turns out. He's got it.

trust.

We decided to switch Speech Therapists.

Neither one of us knows if this is the best idea or not but we didn't feel comfortable with leaving things how they were. I didn't want to waste anyone's time if I didn't feel that we were seeing the person who best fits Maddy's needs. I am sure that ST does a great job with the other patients she sees. She just wasn't right for Maddy, in my opinion, so it's best to sever ties early.

Of course this leaves us with a new issues of now having to travel a much longer distance twice a week for speech and OT therapy. It isn't too much of an issue right now but it will be a problem when winter hits. I know Justin and I both pray for snow every year (yes we are those people) but this year I'll be hoping for a mild winter. I am not incapable of driving in the winter or in snow or anything of that...in fact, I'm actually relatively good at it...but I don't necessarily like it. And when I have any of my babies with me in the car then I really don't like it. But I'm just going to have to trust that this is the direction we are supposed to go.

The rural outreach program offered by our hospital is a nice thing to have, I'm sure, for people not necessarily needing the specific kind of treatment that Maddy needs. The problem is that there isn't anything real definite. There was no specific room just for speech therapy...one day we were using an ER trauma room as our speech room. Watching my 2 year old sit on a chair next to a bed with stirrups on the end while she tried to play with her speech toys was just unnerving. My mind kinda went...wait, what? What is...this?! The only other option was a family room in the hospital that had a table, couch, television....one of those rooms that even I, myself, sat in as we watched the hours on the clock tick away with my Grandpa M on his last few hours of life. Also very unnerving. I'm not saying that my child deserves a special room just for HER...but I am saying that any kind of speech therapy should have a room for it. Not some corner that no one is using at the moment.

And the option of coming to our house or Maddy's therapy room at the church (yes, I need to get that set up...mental note, go do that.) was out of the question...apparently we had to use the hospital facilities.Or lack their of. Weird.

So now we're waiting again...which is a horrible feeling. Absolutely gross. We waited a month for speech to start and then we turned her down so do we have to wait another month to find someone else? I really hope not. I have enough guilt as it is. The hospital was supposed to call yesterday afternoon with a schedule for us but they didn't. That doesn't make me feel any better. And while the scheduling lady is off enjoying her weekend with her family, I am watching my child and second guessing every move I am making. Parenting, when having to make the huge major decisions and not knowing if those were the right decisions, sucks.

Because all I hear is tick....tick....tick...in my brain. Everything says you gotta get this going NOW. If you get to 3 and you haven't started, you lost the best possible time for treatment. In 2 weeks she will be 27 months old and still no real therapy in line yet.

Breathe.

It is insanely hard to relax about this. Worrying doesn't do any good. It's human nature. My human nature. I know that I need to let go, trust that I am doing everything I can and let God take care of the rest. I KNOW that. Can I DO that? I don't know. It's in my brain...but my heart hasn't totally let go of this control issue. This need to try and control every aspect of everything so I can fix it. Even though I am drowning in myself. It's overwhelming. It's suffocating. And heartbreaking.

On Thursday Justin made me take Maelle to the beach. MADE me. Eva had gone to a friend's house. Maddy was napping after her 4 am wake up call. So it was just Maelle awake and both of us were home. He grabbed her swim suit and life jacket and demanded that I take her to the beach for some one on one time...something I barely EVER have with Maelle. I refused at first...I have too much to do. But he insisted. So off Maelle and I went. I felt horribly guilty to both Maelle and everyone else on the planet. On one hand, I was having someone else watch my oldest child and she was even volunteering to do some of our laundry to help me and here I was tripping off to the beach like it was nothing. And on the other hand, I never spend any time with my middle child...ever. She is always with a sister if she is with me. So it was much needed.

And as I sat on the sand and watched my beautiful normal spectrum functioning two year old throw rocks into the lake and giggle and laugh, I started to cry. She is so awesome and I'm missing her. She's being thrown into the "you're normal therefore you're fine" category. I was becoming one of those parents who neglects their other kids and only focuses on the "sick child". Though totally NOT intentionally. I mean, how could I not? It's typical trauma code...deal with the most life threatening patient first and work down from there. Do enough to get by with the others so they are okay. Not that parenting is trauma code...but you get the analogy, right? (no, i have no experience in the medical field...just raised by parents who were)

I did my best to let go of everything else that was happening at home and just focus on the beach, Maelle, and me. We had fun. She was amused by the sand and the rocks and the water. We stayed an hour and then she just put her shoes on and looked up at me with her beautiful crystal blue eyes and said "go go?"

I love her. I can only hope that I don't have to be forced into reminding myself to spend time with just her. That she has needs too. She needs her "ommy" just like Maddy does. And Eva does.

The moral was not to get so caught up in helping Maddy that I'm missing the bigger picture. I have to trust that God will give us the tools to do this. That He will sustain us. He will guide us through this path and however autistic spectrum or not that Maddy ends up being....she will be okay. She will be Maddy. And we will be a family. The housework will get done eventually. The meals will be cooked. The dogs will be walked and trained. The cats will be fed. The therapy will be done. And life will go on. We will make it. I have to trust that God gave us Maddy for a reason. She was our twin that we weren't planning on and her surprise existence and then surprise autism are all for something much greater than just US.

I can see her changes everyday and those changes are outward and not inward. That needs to give me hope. That He is providing a way for her. The simple fact that one day she was sitting on the slide waiting for her sister to climb up the ladder and she looked over at her, smiled, and said to her sister, "Hi Maya!"

That proves to me that we are not alone in this battle. We are never alone. Ever.

divided front.

Pretty much everything I have read that has been written by parents of Autistic children say the same thing...a subtle warning to prepare yourself for hitting about 900 roadblocks when it comes to therapy and decisions and whose opinions count and whose don't.

A month into this and we hit our first one. And yes, it has to do with PECS, that I mentioned in the last post.

I kinda sorta saw this coming but I was trying to ignore my gut. Something, that yes, I know I should not be ignoring. But you know when you're being thrown into an entire new world of things, you tend to not know what to think or what to trust.

So Justin took the girls to speech today. He offered and I took him up on it, giving me a chance to do some much needed deep cleaning in the house without the girls present. In all reality, I should have taken the opportunity to take a nap or enjoy a moment of my life without kids, but of course the practical side of me saw an opening in the war of mom vs. house + kids.

He asked ST if she had talked to Dr. MAL about PECS and unfortunately she had not had that conversation yet with Dr. MAL. So Justin informed her of our decision and from what he said, the defense gear came on. And thus begins the battle of whose therapy is the best therapy. Really. In 2010, we are still dealing with the SAME issues that Catherine Maurice dealt with in 1987?! Really?!

It makes my blood boil. It really does. Because I don't care WHO is right, I just want my daughter. I just want her. I don't want to win awards for finding the best therapy options in rural America. I don't want to be recognized as some kind of pioneer. I want my Maddy. That's it.

Instead I'm getting a frustrated and anguished little girl whose world is slowly being swallowed up by a big black sea. All I want to do is rescue her and I'm grasping at as many red lifesavers as I can.

And not only was the defense gear on but so was the offensive gear too...specifically towards Dr. MAL and how ST thought her ideas were "out there". (In Dr. MAL's defense, she spent her entire grad program in Autism and studied under Dr. Mulick who has ties to Dr. Lovaas, the pioneer himself...Mulick who has his own success rates with EIBI and...blah blah blah...she knows her stuff. Alot of people still think Lovaas was a robot creator and not really helping children recover from Autism) ST then informed Justin that she studied at a specialized school for autism..therefore she knows how effective PECS is. Which Justin raised the question that if she studied there then why she she only doing speech and not more Autism specific therapy such as ABA or what not. Is there such a thing called a PECS specialist? She might as well be one.

Eventually she realized how she was appearing and gave up to say, "well, you are her parents and you can decide what kind of therapy she receives." Thanks for stating the obvious.

So here we are. I don't really know if I want to continue speech therapy with her...but if not, we're looking at a 3 hour round trip commute twice a week for 30 minutes. Yet, there is a possibility that maybe I could schedule her OT the same day as her speech so at least the trip would benefit twice. As if we're not fighting a hard enough battle with Autism in itself, let's throw in the distance, the remoteness, and lack of professional personnel.

I feel like I'm beating my head against a wall. A rock solid wall.

For the last few weeks I have been physically sick to my stomach at night. I thought for awhile that I had caught a bug but a month later, I have realized that it's me. I'm literally making myself sick with worry. At times in my life, I've lost my appetite due to stress or depression but this is new. I have never felt nauseous over something. So physically ill with worry.

The weight of the world seems to be on our shoulders. The weight of Maddy's world. And every new decision or obstacle adds a few bricks. Because there is no way to know at this point if we are making the right decision. And the dark mud that we are mucking through isn't getting any clearer.

I know that every child on the autistic spectrum is unique and therefore that child's therapy needs to be unique...so why are we attacking the different approaches? Why? Don't we all want the same thing? Our kids back?

scattered.

The EIBI workshop is scheduled for Sept. 13th. If you need more info than that, let me know. EIBI stands for Early Intensive Behavioral Intervention and is a form of ABA and of course is a form of the behavioral therapy that was first integrated by Dr. Lovaas back in the 70s and 80s and so forth. You can learn a little bit more about EIBI here on the Association for Science in Autism Treatment website.

We met with Maddy's psychologist, Dr. MAL (using initials) on Thursday. The visit went really well. She will be leading the workshop in September, of course, and we feel comfortable with her expertise as we travel down this road of therapy and hopeful recovery.

(sidenote. let me apologize if this is the most choppy and weird post that I ever write. My brain isn't in "writing form" so I'm grasping just trying to make some congruency in writing this entry. Normally I would just put it off but I need to get the info out there)

Dr. MAL took down the names of all of Maddy's current therapists and will be calling them to establish some congruency to her therapy sessions. The problem that I was seeing was mostly in Speech and the PEC system. Remember when I mentioned PECS in the last post (PECS actually stands for Picture Exchange Communication System)? Well...from early on I could tell that Maddy was having some trouble wrapping her mind around this. Basically in the early stages that we are in of Speech, PECS was introduced with a "more" card. ST wrote "more" on a card and then had Maddy hand her the card when she wanted more of something. The problem that I was seeing was that Maddy already knows the sign for "more" and she is beginning to say it as well. The card was meaningless to her because she doesn't read and she really didn't have any clue of whether she should be signing "more" (like I require her to do at home) or giving this card to ST for more. Many times she tried to both but you can imagine that would be frustrating. Think of your everyday conversation and then imagine that you would have to hand someone a card or picture for everything you wanted to have or to express EVEN THOUGH you could sign or speak it. Annoying, right? And in a sense eliminated the need to speak if you can just hand someone a picture for it.

Now, do not think, for those of you who are in the "know" of everything I am talking about, that I am bashing PECS because I'm not. I think it would be/is highly useful for people who cannot speak or are not showing any signs of any kind of verbal or sign communication. In those situations, I can only imagine how VALUABLE this PECS system is. I bet it truly is amazing.

However, Maddy is showing signs of speaking...she has roughly 30 words at this point (mirror that to the mere 10 she had in April when we started Early Intervention) and a dozen more signs that she doesn't speak at this point. And she babbles. Plus she is beginning to use up to a 3 word combination. Such as "here you go". She added "welcome" this week after she hears "thank you" or says thank you.  And so obviously we are at the threshold of some really awesome speech...let's not confuse that with pictures. Of course we will still use them as like a visual aid...such as a schedule of what we're doing today but not as a basis for her communication TO us.

Okay. Enough of that. And for all of you who are going...what? I know. A month ago I would have been SO confused too. Thankfully I have this college degree in broadcasting which taught me how to think like an expert at something in a short amount of time...not that I am...but it comes in handy. Who would have thought being a reporter would pay off after I've been out of that industry for 4 years now?

Either way, I think any parent with a special needs child would understand that sometimes while all of your help has the best intentions....it's like being pulled in a million different directions at the same time. Everyone, including the general public and medical professionals alike, has an opinion on how you should be helping your child. Heck, most PARENTS in general know that. The unsolicited advice can be deafening. But so can the silence...so while I don't always appreciate everyone's opinions...I don't hate it either. Because the double edged sword of this is that sometimes when people say NOTHING to you about your child, it hurts more. It makes your child and your current situation, invisible.

Wow...I wasn't even meaning to talk about that today.... Anyway, I am a mess...of sorts. All I want is for Maddy to be "fine" - whatever that is. Sometimes I want to just wake up and she's smiling and talking to me and shows no autism aspects. I know that's SO unreal but I think it would be weird if I didn't wish for that. I know there is NO miracle cure for autism and I know we have a long road ahead of us. I know these things but my human brain still wishes that it wasn't true. I'm sure anyone with kids who have illnesses like cancer or diabetes or heart problems or tourrettes or Downs or any of them ALL wish their kids would wake up one day and be "fine". Like, oh, it was a mistake and your child is fine. Normal functioning child with no medical issues.

They say having your child diagnoses (preliminary or not) with Autism requires a grieving process. Just like any kind of loss, there requires a grieving process. I don't know what stage I'm at. I'm not in denial but maybe it's some kind of hopeful/realistic denial...like yes, i know it's true but I wish it wasn't. I'm still gonna fight really hard for it not to be true someday eventhough it is now. If that makes any sense.

Alright, just to wrap up this very scattered and jumbled entry. For those of you looking to HELP us. There is the workshop on Monday the 13th of Sept. If you have no desire to take part in the workshop, I will need childcare for my kids and those other mothers who will be attending sans kids. My friend Laurel is organizing a signup for bringing us meals twice a week...you can contact her about that - if you don't know her or what not, email me: jbkatt@yahoo.com and I can get you connected. Other needs include child care for Maelle and Eva - roughly 2 hours a day 5 days a week - you can sign up for one day of that week and Maddy's therapy will be at the church so you can even watch them there if you don't want to/can't bring them to your house or you can come to my house. And general housework. Such as helping me by washing/vacuuming my floors once a week or folding laundry or dusting or helping me organize this clutter. It's not always the huge things...sometimes it's the little things adding up that make everything very overwhelming for all of us. Like taking 30 minutes to come over and unload/load my dishwasher. Or changing our bedding. Seriously.

And if you want to know, in all honesty, it is VERY hard and VERY humbling to have to ask for these things. As mothers, we like to think we can do EVERYTHING and when we can't then we have failed in some ways. It's true. But my daughter's life is at stake and not my pride nor what I think other people think of me. Honestly, I just don't have time to mop my kitchen floor. Someday I will again. But not now. So for those who want to help...that is how you can help me. And prayer. Pray. If you can't do anything on my little list, pray. For Maddy. For me. For Justin. For Eva. For Maelle...just pray.

connections.

Maddy had her hearing test on Friday. It went way better than I could have ever envisioned. This girl has a tendency to prove me WRONG when I think things are going go a certain way. Thankfully, she tends to prove to me that she CAN behave rather than she can't.

Her hearing was fine. Perfect. Great. No issues there. So cross that off the list.

I didn't think there were any issues but I needed to be able to cross off something from the ever growing list of things that need to be assessed.

She did great. Turned her head to the sounds, looked at the lights, and was just a joy. The amazing thing was she had 100% name recognition when we were there. She looked every time her name was called. Consider her name recognition was like 20% in April...this is huge to us. We were out of there in 15 minutes. It took longer to wait in the waiting room than to do her test (typical, right?).

We came home and had another round of speech therapy, this time implementing PEC and ABA. I still don't remember what PEC stands for...and I could google it but I'm sick so I'll just explain it at this point as picture communication. They hold up a picture to explain to Maddy what they are want. Sometimes it's a question...like choosing which picture she wants or it's a request. We start out slowly (just like ABA) and start with the concept of "more". ST (okay, yes it sounds horrible to refer to someone by their job but I'm afraid if I gave her a fake name at this point...I might actually start calling her by that name instead of her real name and yeah...so ST it is) wrote "more" on a piece of paper and made Maddy hand her the card when she wanted "more" m&ms. It took 2 turns of hand over hand (where I hold her hand and her hand holds the card and together we do the action) before she began doing it on her own. By the 6th try, she said "more".

Let's stop for a moment.

I've never head Maddy say "more" before in my life. And to any other parent, it may just be one word out of the thousands that their kids say but to me it was incredible. I couldn't think of anything more beautiful (besides I love you, mama) for her to say at this point. I had chills of excitement through my body as that little girl sat on my lap waiting for her candy.

She didn't repeat the word, though we tried to get her to say it again. But continued with the card. Nice to see it is there and she is connecting that part of her brain. We continued on to another task which involved a Polly Pocket and spoon. She was to give the item to ST depending on what she asked for. I was a bit surprised by this because it's a bit more advanced in ABA. I have read that you start with just her giving you something and then only putting one other thing in there but never asking for it and then finally asking for either item. She did well though. Once she understood what was what then she was right on.

She played for the remainder of the time showing how much of a visual learner she is. As soon as ST would do something, then she would copy that. I have always known how visual she was from a baby but now it really seems to be working in her favor....for now. It will make understanding the concepts of what we want her to do and to make those connections in her brain easier. I can predict that it might be a challenge when we start requiring her to do things with only a voice command (like bring me your shoes from another room or something like that) but that's later. Let me be happy about now. And feel a sense of joy since I too am SUCH a visual learner that I can relate to her.

Her twin sister didn't have such a wonderful time at speech at her first session, but Maelle is quite shy. And stubborn. And at this age, Eva didn't talk to anyone other than her family either. She could speak paragraphs as long as no one else was around. And sure enough, as soon as we left that room, Maelle babbled away happily down the hall holding my hand. Stinker.

Otherwise, things are going well. The melatonin has worked a magic for us as far as bedtime goes. It really is amazing the change we have seen in her. She sleeps in her bed. She hasn't been rocking to sleep. The only downside we have noticed (aside from getting her to TAKE it in the first place) is that she is waking up at 6am now. Ugh. Some mornings it is 5am. She is getting to bed earlier so she is waking earlier. I'm not sure which one I like more...but I do know that I am glad that at least she isn't rocking against the door for hours at night.

Behaviorally....she has developed some issues there. I can say that I am not at all surprised. I expected all of this change on her to manifest in some way and I had also expected it to be her mood and it has been. Don't get me wrong, she is still happy Maddy. But if she doesn't like something, the tantrum has become very physical. She is hitting, pushing, kicking, throwing herself around like a 2 year old bully. And the biting. The biting is bad. Oddly enough, I'm thankful that Eva was a biter so this isn't foreign territory. But she was much younger with her biting (which makes sense with Maddy's developmental age being around 18 months - that's how old E was when she bit) so she was easier to contain. And she didn't have anyone other than me or herself or Justin to bite. So you can imagine that Maddy's main biting target is.....Maelle. Who in turn has started to bite as well. Ah yes. Why is it that bad behaviors are easier spread than good ones? But we're dealing with it. It's challenging and frustrating but I know her frustration is the root of all of it and once we break through the communication wall we are up against, it will get better. I know this. Sometimes you have to accept some bad that comes with the good, knowing that the good will later eliminate the bad.

And we're waging a war at this point. A war against Autism. Autism that is trying to immerse Maddy in a world where only she exists. We want her in our world. With us. We will win. But it will not be easy. So I have to remember that when she is at her worst...and when she is at her best. It's a fight to drag her out of Autism's grip. I can thank Catherine Maurice for giving me those images to trudge forward with. She fought a battle and won twice....rare, but it can happen.

For now, we are in the midst of chaos. Really. Sometimes I don't even know where to begin because we went from being stuck at home to running from appt to therapy to appt to therapy and back. My house. My life. My mood. My brain. My world shows it.

Case and point: I was at the salon finally getting my haircut (it's been since February...yes, i deserved that one) and at the end of my appointment, I took out my day planner to schedule my next cut (hoping if I schedule then I won't wait half a year to do it) and the stylist admired my planner.

"oh I need to get one of those! How great, you have your own planner."

and I looked up at her and started with "Yes...." and then stopped. I was about to tell her that my child was recently diagnosed with Autism and she has so many appointments now that I needed somewhere to write them all down or I would forget and I can't forget these very important- and then I thought. STOP. This woman doesn't need to know any of this. Just say thank you.

"yes, thanks, it's nice to have" I responded and that was all. A seemingly normal conversation, thankfully to her. And that made me realize just how out of it my brain was getting. Just how immersed I am.

So forgive me if I don't stop myself in the future and we have a really odd conversation like that one could have ended up being. I realize now that my brain isn't totally connected either.

speech 101.

Maddy had her first speech therapy session yesterday afternoon. She had developed a cold on Monday night so I was a bit skeptical on just how well it was going to go. She was doing better than Maelle (her twin sister) who was coughing and just a horrible mess. Maddy's was more runny nose than anything else.

Then I had to wake her up from her nap to go to speech...so then I got really skeptical on how cooperative she was going to be.

Then we got there and she was....ALL SMILES. That girl. Never ceases to amaze me. I know she doesn't feel well, just woke up, and she's going to a stranger in a strange room and she's fine. Happy. Good spirited. wow. I don't think I would be so happy about all that myself...but she's obviously not me.

So they play in the room, her and her speech therapist, (I'm starting to wonder if I should change names or get permission to use them....hmmm... for now I'll just call her ST for speech therapist) and Maddy is happily babbling and repeating and being extremely cooperative. She is saying words that I have not heard her say before like "in" and "open". We discuss Maddy for a few minutes while she plays and ST is surprised by the autism pre-diagnosis.

"Wow, she must have a really mild case of it. I have children who are severely autistic and it's quite clear and very hard to reach but she is doing great. I wouldn't have suspected that right away."

Of course, that makes me feel about a ZILLION times better. But as Justin pointed out later, that's the curious thing about autism. One professional can see it in one child so clearly and someone else can see it so mildly and from day to day and even hour to hour, just how severe or not severe, changes. It's not as (I hate to use the word "simple") as it is with cancer where the evidence is clearly there. Either there are cancerous cells or there are not. You can't have cancer one day and the next day not really. You either have it or you don't. Autism is sneaky that way, which I think is why many kids go unnoticed for so long because you can excuse it away for a very long time. "oh she's tired" or "she doesn't really like that game" or "well, I was really bored too so I would be zoning out too" or "Well, if I just played with her more often" or "she's teething that's why she got so upset about ....." and the excuses can go on and on. Not necessarily missed...just explained away. And I can say this because it's the SAME thing I did for months before I called Early Intervention.

And in some ways, I'm still having to point them out for people who just see Happy Maddy and they don't see the other factors at play. They don't see the lack of eye contact because they aren't looking for it. They don't see her rocking and banging her head against the door at night to fall asleep. They don't see toe walking. The lack of cognition. They just see Happy 2 year old Maddy. And GOOD. Because in the same token, I don't want people looking at my kids and then saying "oh she's the autistic one" either.

So I guess I'll just try my best to take the general professional and nonprofessional public's take on my daughter's severity of autism with a grain of salt. Until she isn't meeting criteria, she has autism...regardless of degree. When she doesn't meet criteria (which i have hope that she won't some day) then she won't have autism...regardless of degree.

Her pediatrician called and was very helpful. Back on track with her...the last meeting must have been a bad day...for either or both of us. She agreed to our thoughts on trying Melatonin at night for sleep and a vitamin B6 and Magnesium trial. Her hearing exam is scheduled for Friday. I'm not hopeful of that...she hates having her head touched and ears are worse. I'm guessing they will need to sedate her. At this point, I want it CLEAR that her hearing is fine. I have to eliminate all of the potential possibilities that I can.

Tomorrow we go back to her psychologist (it still sounds very odd to say your child's psychologist...it just does) and hopefully get some groundwork ready for ABA training. I have been asked to make a list of the things that I need help with. I hope to get that done soon. So I will have some concrete things that I need so people who want to help can look at that and see where they fit in. I have been blessed (literally blessed) with an abundance of friends willing and waiting to help me...they just need to know how. And once things really get set into place I will gladly take their help. At this point, I doubt I will say "no" to much.

A little sneak peak of that list is that right now we are hoping to have Maddy's therapy for 2 hours every morning at our church. We will need people to watch Eva and Maelle during that time OR willing to help in Maddy's therapy during that time. Generally speaking from 9am to 11am.

I could go on but my mind is spinning already. I'll be working on the 'support list' and hope to post it soon. I don't think I will have any definites until school starts as many of her therapies are dependent on school - ironic since she isn't in school yet but most of her therapist work in the schools with other kids.

On a happy note, because I have to end things with a happy note...it keeps me going. She has started to say "here you go" when she hands us things. This is a like a double note happy note. First that she is giving us things and she is speaking a 3 word combination. Very amazing. Just like our Maddy.