pillars.

Maddy had a very important day today. She completed her first ever IQ test. She also did several behavioral tests and Kindergarten testings.

Thank goodness that she is four and has no idea to get nervous for these things. And thank goodness for Dr. MAL (again) for being a constant for Maddy so that she knew exactly where she was going today and who she would be with. Maddy happily greeted Dr. MAL and marched on back to her office without more than a "bye Mommy" to me.

If only things were so easy for Mommy.

She had three hours of testing today. 3 hours of pure brain power. (Okay, they took breaks too...let's not get too drastic) and just thinking about it made me tired. I haven't had to put my brain to work for 3 constant hours in quite some time....and not just thinking but having to answer questions on demand.

My work consisted of filling out the GARS, Vineland, and the other developmental survey that we have done yearly. And after just doing these a mere six months ago....blah...this really should only be a task to do once a year. They are exhausting and after awhile you really begin to question whether or not you know all that your kid can and cannot do.

And then wait.

We eventually ran off to Sam's Club to get some of the monthly grocery shopping out of the way but it felt weird shopping while she was testing. I don't know why.

After the three hours were up, out bounced one happy little preschooler. Ready to turn in the coins she earned for prizes and go to "King Burger" for fries and apples. I thought for sure we would have one grumpy and overtired little girl this afternoon. As usual, Maddy proved me wrong. She was wired! Happy, skipping, chitter chatting non stop. All. Afternoon.

All was well....except...I hate these days. I guess I am an avoidess...meaning I don't like to deal with memories that are challenging. In some ways, I find it best to just push forward and hope that time will deal with those memories and not me. It's a really dumb belief. And I know that I cannot push these things away forever. It's just extremely hard to remember those days. To remember how close we came to losing her completely. To have nothing but the shell of our baby girl. And maybe it's really hard sometimes to see her now and see how amazing she is and just how we might not have ever known this. Not that I sit around weeping all day. I don't. Thank the Lord. But days like today make me face the reality of how close we came.

Justin has the wonderful outlook of being proud and happy to take these surveys and do these appointments because he feels great being able to focus on what she can do NOW and what she did not do THEN. And that's a great point. Logically I know this.

My heart still aches.

Generally because I didn't have time to weep then. I didn't have time to sit and cry. To crawl under the sheets and cry for a few weeks. I had to take action and I told myself that once she was better....once she was recovered and typical then I could find the time to cry.

The only "problem" is that now is that time. And I generally do not let myself cry about things.

Preliminary results were that nothing huge jumped out at Dr. MAL. Most of her little hiccups, if you want to call them that, were age typical. Typical. Something we prayed for. Something we continue to pray for. Justin joked and said "yes! Our daughter is average!"

Dr. MAL was quick but quiet to point out that she is slightly above average.

We will return in 2 weeks once she has had time to score everything. We also have surveys for Maddy's PreK teacher (oh won't she love me tomorrow when I give them to her??) to send in for scoring.

Such blessings and how horrible that my fault is that I don't know how to receive blessings.

This past weekend, Justin and I were eating lunch in a small downtown bread shop. The minute we walked in the shop and I saw the boy in his preteen awkward body and the way he was eating an over sized cinnamon roll, I knew the boy was on the spectrum. I just knew. Then he started talking with his father about history and government and presidents and obviously things that I know nothing about but probably should....I knew. He is on the spectrum. And the good father that he had was right there, eating lunch with him, and asking him questions and gleaning from his knowledge. Making a connection with his son in the best possible way.

It pained me to see them. I wanted to cry. Just sit and cry for this boy and his father. Not because I pity them. Not because I think that I, of all people, could have "saved" his son. But there was empathy and there was beauty in what the boy's father was doing. And how this may be something they do every Saturday afternoon. Or even everyday.

I wish I could put words to the feelings I have. But I don't. Sometimes pain...good or bad has no words.

How am I going to help? How am I going to overcome this overwhelming rock in my stomach from 2010? I don't know. I know God does. So I will keep trusting Him. Keeping pressing in and on. I am forever thankful. These feelings that were stuffed are working their way out. They need to. Ready or not. I gotta face this.

Vote for...

I do not like election talk. (in other words....prepare for a rant.)

In fact, I hate it.

Lately, I have been doing less and less television watching and that is not due to the fact that EVERY commercial is a slam against some political opponent, though that would be a good reason to do so. I just don't have the time and patience for television anymore. I would much rather read a book and let my brain give me imagery than a box. Plus, we have found with Maddy that too much TV is not good for her brain. We notice her behavior is directly related. Lots of tv = bad behavior. Less tv = good behavior. And she watches good things like Little Einsteins or Word World and still...it affects her.

So in the rare moments when I take time to watch something and I see the political ads, it disgusts me. And it's not just television....you can see it all over the internet. Facebook can get brutal.

I'm not necessarily a party voter. Admittedly I tend to vote more democratic but don't stop reading now because you are a republican. I frankly don't care what party you are.

What I do frankly care about is autism. Specifically what is going to be done about it.

And have ANY of the candidates discussed it in detail......

Can any of you answer that?

I sure can't.

In my stupid state (I do LOVE north dakota, I honestly sincerely do.) I haven't heard a word about it. My stupid state still cannot pass any kind of insurance reform. My stupid state still cannot agree that ABA is the best course for autism. My stupid state is so messed up that people have to quit their jobs just so they can qualify for Medicaid so they can get HELP because they can't afford to work and not get any help. MESSED UP.

Oh but wait....this candidate wants to cut Medicaid because people are just lazy on Medicaid. If they were cut from it, then they would be inspired to get a job. Sorry. No. I will honestly admit we were on Medicaid for 2 years while Maddy had her diagnosis. We were on WIC. My husband has a state government job and we could not afford to pay for our expenses. Our community rallied around us and raised THOUSANDS of dollars to pay for Maddy's treatment that was still mostly supported by VOLUNTEERS.

Could I have worked to gain an income so we wouldn't have had to be on Medicaid? Oh but I was. I was working my butt off running my daughter's ABA program. Her 30+ hour a week ABA program that required close to 75+ hours a week for me. Not to mention my other two kids. And the 24 hour a day monitoring that she needed. But...sure...i should have found a job instead....left my kid to her autism world and left the tax payers to pay for her future institutionalized care that would have been near millions by the end of her life. Yeah, that makes sense.

No one is talking about an epidemic happening to our kids. It was 1 in 120, then 1 in 100, and NOW 1 in 88....holy crap. And NO ONE is talking about this???? Even AIDS in the 90s wasn't this bad and it was ALL OVER THE NEWS. I remember being taught as a young elementary kid about AIDS and how it was safe to be around people with AIDS...how not to bully them. Is anyone teaching our kids about autism? Is anyone teaching them how to be around kids with autism and not to bully them?

So who will I vote for? Show me a candidate passionate about autism - finding a cause and teaching remission while forcing insurance reform....and I will vote for them.

thank you aba.

Not to be misread as "thank you abba" as I really don't have anything to thank abba for...

I could probably write for hours about ALL of what ABA has done for me but I don't have hours. I have approx. ten minutes before I seriously need to get supper made in the kitchen...really I should be doing that right now, but I had to spare 10 minutes into the sloppy joe prep time to write this quick jot.

I am teaching Maddy and Maelle to read. It's a program based on ABA thinking and takes 100 easy lessons that are roughly 20 minutes long. And sometimes those can be the longest twenty minutes of my life. Sometimes they can be the most inspiring 20. It really depends on the day, the kid, and the lesson. And while I had great intentions to do this everyday this summer....they are only on lessons 11 and 12 as I had to take a break in mid summer to clear my mind from this daunting task.

Teaching kids to read is hard.

But, that's not the point. Because teaching a child to come out of Autism and into the real world is hard too. really hard. But possible.

So I really just want to thank ABA for teaching ME the power of positive reinforcement. For teaching me that if I get completely and overly excited about one small thing...eventually those small things build up to huge mountains that children can conquer almost effortlessly.

I am no stranger to acting ridiculously happy. I tend to be the type of person who is willing to do most anything for some comedic laugh. Odd since I am an introvert...but anyway, yes, if I can act really dumb to make you laugh...I will do it. So can I act overly silly and excited to praise my kid and make them believe in themselves? You bet. And it works. Really. It does.

ABA is all about breaking things down to small steps and when the kid does that small step, praise them like there is no one watching how ridiculous you are being. So when Maddy read the word "sat" today and I danced around like a monkey....my mind was thanking ABA.

I don't think I would have ever thought that such small things as tickles and giggles and shouts and high fives over writing the letter "t" would create such awesome responses....but it does. And it teaches both Maddy AND Maelle that they can do amazing things because I believe in them. That's a wonderful gift.

This is such a weird post but I have to make supper and I don't have time to edit out all of my side thoughts...so welcome to my brain...I'm gonna go make sloppy joes.

testing season.

It is that dreaded time of the year for every parent with a child who has/had autism or any of the spectrum disorders...reassessment time.

One would think that since Maddy is in Remission that testing season wouldn't be so nerve wracking for us. But it is. I don't know what it's like to have a child who had PDD and went through retesting and was "upgraded" to Autism or Asperger's or what have you on the outcome. I don't know what it's like to have a child with autism and after retesting still has autism. I do know what I know. And I know is that it's hard no matter what the circumstances are. Because let's face it, your child could have a really horrible day and the outcome is drastically worse then reality. Or your child could be totally on top of their game and have a more dramatic outcome then reality. Kids are kids. They, like us, have their good days and their bad days. You can prep and study and help them but ultimately it is up to them.

And these are kids that are young. The younger you are the less predictable you are, in my experience.

I'm not bashing the system...it is what it is and without it, we wouldn't have what we have. And I can't say that any of Maddy's test results (though she is still in the middle of them until July) have come back skewed. They have been exactly what I expected so obviously the system works in our case. I know what Maddy can and cannot do...but that doesn't mean I don't still worry!

She had her Speech and OT assessments last week and like I said, I was not surprised by the outcomes. Thank God. I did get to watch her this time which is new, usually the parent is far too distracting for the child so we have to step out but I guess at 2 days shy of 4, I was no longer distracting for Maddy.

Speech was up first. I must say that I LOVE Maddy's SLP, Jen! I do. I honestly love that woman. She has been with us since the beginning and I trust she knows our Maddy's speech abilities as well as we do!

There they were testing. I was amazed at Maddy's skills. She was wonderful. I went into that testing not having any concerns over her speech abilities (minus grammar but she is only 4) and the outcome was just that. She did amazing and Jen had no concerns and nothing to see her for! She tested within the norm for 4 year olds and even some scores on the higher end of normal.

She sat for nearly 1.5 and did this! That was extraordinary in itself.

So we shuffled off to OT. We already had concerns on her lacking OT skills and she had just sat for over an hour testing her speech skills. It's kind of the equivalent of doing your homework: you have 2 projects to do, one is easier for you but it's still going to take awhile and the other is hard. You chose the easier yet more time consuming one and by the time you get to the harder assignment, you are already taxed on your mental ability.

We let Maddy play for a few minutes in the balls while I spoke with Steph, her OT.

And I must say that I love Stehanie just as much as I love Jen! She, also,  has been with Maddy from the beginning. She has seen Maddy at her best and her worst. Maddy had mastered her OT for her age last year around this time and we were thrilled. Stephanie wanted to keep an eye on her and had been evaluating her every 3 - 6 months.

She had not seen Maddy in 6 months and while Maddy had made huge gains in those months, her OT skills had not really grown much. She still has trouble with her pencil grip. Her hands get tired easy and she just doesn't want to sit and do fine motor activities. She's not a child that likes to sit and color. That is torture for her. She would love to sit and read a book or sit and play with her Mario guys but to color? Ugh. No thank you.

I could tell she was getting to a breaking point and I quickly grabbed a rice crispy bar in hopes to give her some sugary energy. She didn't really want to build with blocks, something she doesn't normally struggle with.

She did her best with a few outbursts. Maddy is a pretty happy, easy going child...but when she is done. She is DONE. And the outbursts will only get worse if left unattended. Some kids just shut down and refuse...she's not quite that bad...but her patience doesn't last long when she is reaching her breaking point. But let's face it. She is FOUR YEARS OLD. What four year old would put up with being tested for nearly 3 hours?? Not many.

We got some tips from Stephanie and we are to see her again in 3 months with hopefully some dramatic improvement or we will be looking at OT sessions again. I'm not overly worried. I don't really want to travel and do OT once or twice week again, but if we need to, we will. That's just how it is.

Today I did her GARS, Vineland, and Child Behavior Checklist...another yearly daunting task. Any time you have to answer multiple questionnaires with 100+ questions on your child's behavior, it's exhausting. Am I overly worried about any kind of spectrum re-diagnosis or regression? No. Frankly no. I can say that with honesty since we visited with Dr. MAL 2 months ago and she was very excited about how well Maddy was doing. Does Maddy still have things to conquer? Yes. She still likes to chew on everything. She needs help with her OT skills. Is it enough to warrant fear? No.

I am forever thankful. She has her good days and her not-so-good days. She is going through a very defiant stage and challenging our parental authority....like any other 3-4 year old. Eva did this at 3, Maelle did it at 3.5, so of course Maddy will do it at 4. I have the luxury of remembering just how awful Eva was at this phase and seeing what a joy she is now at 6. One of the various reasons why siblings can be such a blessing for children AND parents.

Maddy sees her pediatrician tomorrow for her yearly check up. We will see Dr. MAL on June 27th. She will have scored up our questionnaires and we discuss Maddy's 1st year of Remission from Autism.

As always, praise God.

2nd Annual Puzzled Over Autism

It's April! So welcome to Autism Awareness Month!

Also, we are a mere 18 days away from our 2nd Annual Puzzled Over Autism Event. Who is ready to spend 12 hours puzzling with us???

On the last Saturday of April, we hold a 12 hour puzzle-a-thon in order to raise money and awareness for those with Autism.

This year we will be raising money for Maddy's summer speech program, which will have high co-pay costs.

Because Maddy has done so extraordinary, we are now taking applications for other families to be supported with our puzzle - a - thon. This years' "Friends of Maddy" include Chris Kincaid and Maggie Luibrand.

Chris Kincaid is a teenager who has Asperger's. I have had the privledge of knowing Chris for almost 2 years now and he is such an awesome guy! Skater and hip hopper...love him! He is in need of some educational tools to help get him through high school. He is mainstreamed and honestly he does amazing! But there are always areas that could be improved and we hope to help him.

This year we are branching out to help another girl in our community and while she does not have autism, she suffered a brain injury at birth. Maggie Luibrand has done some amazing things in her mere 2 years of life and we hope to continue to encourage her and her family to the best of our abilities. We recognize that families with ANY kind of special needs children need our help and we're asking for your help in us helping them!

So how can you help? On the sidebar, there is a link to our paypal page if you would like to sponsor Maddy in the puzzle a thon. Basically we ask for a flat rate to contribute and encourage Maddy in her puzzling. It can be any dollar amount. Just be sure to comment that it is for Maddy's Puzzled Over Autism sponsor.

Then come join us, if you are local, on April 28th from 10am to 10pm as we puzzle away! There will also be chili served from 11am to 7pm if you aren't a puzzler but would still like to join in the fun and eat some grub.

The flyer is coming soon and I will post it then. Thank you all for your continued support. Without you guys, we don't know where we would be!!! We can only hope to carry on that hope to many other families in our community!!

Much love.

If you know of a family that could use our support for next year, send us an email at maddysvoice@yahoo.com for an application for that family to be included as "Friends of Maddy".

happily mistaken.

Today I sat on the arm of my couch and looked out the window. (I know and yes, my mother did teach me that I shouldn't sit on the arm of furniture, but I still do it. I am teaching my kids horrible habits as I have never once told them not to do it. I let them jump on it too. shock and awe.) I was staring out there waiting to watch Justin drive by, off to his conference. The skies were gray and the clouds were telling me that it would be snowing soon.

I was feeling melancholy at the departure of my husband. After ten years of being together as a couple and married for eight of those years, he is my constant. I do feel a bit lost and a bit not all together with him gone. My best friend through it all. I love him more than words.

I heard a small creature clamber up beside me and from the corner of my eye, I saw a pink shirt and sandy hair. I heard, "what cha doing, Mommy?"

I kept staring out the window and said, "I'm just watching for Daddy to drive across. He's at Dennis' getting ready to go."

And as I turned to look at who I thought was my Eva, I found Maddy. I shook my head a little and smiled. "I thought you were Eva."

She shook her head, "No, I'm Maddy, Mommy."

"I know that, silly. I know. You just sounded like Eva."

To which, she just shrugged and pretended to fall off the arm of the couch into the game of Save me, Mommy.  And I was left a little dumbfounded.

First let me address the obvious...Eva has sandy blond hair and Maddy's is kinda sandy brown...so how could I mistake blonde from brown? Well, Maddy has natural blond highlights on the top of her head and close around her face. Eva's hair also is how mine used to be where it would be almost bleach blonde in the summer from the sun and then sandy in the winter...so in a quick corner glance, it's easy to do.

She spoke like Eva. Eva, the first born, has never sounded like a baby. She started talking around 1 year and she always sounded like a grownup. There wasn't any baby speak or toddler speak...she just spoke. Maddy has toddler speak. Where they leave unimportant words out...or they phrase them differently: "what are you doing" in toddler speech is "what you doing".

And I, thinking that I am talking to Eva, responded in a way that I would to her. I told her exactly what I was doing...where if I knew it had been Maddy, I would have said, "oh just looking out the window to see when Daddy comes by"

It's a funny thing. How differently you talk to each of your kids. And I never really realized it until that moment.

But more importantly, I took that one quiet moment to realize that even when I try to relax and not worry about Maddy. When I try not look for any kinds of regression, that I really don't. Until I get a moment like that. An innocent moment that any parent has with their kids and mistaking them for someone else. But the fact that I could mistake Maddy for Eva was beautiful.

Not that Maddy needs to strive to be Eva.

Maddy will always be Maddy...with her quirks. And her love. And her literal words.

Eva will always be Eva...with her drama. And her love. And her big sister teaching.

Maelle will always be Maelle...with her temper. And her love. And her mothering.

Maddy has been sick alot this year. Any kid who is sick all the time is not their usual selves. They can be whiney, or clingy, or crabby, or distant. Maddy is absorbed and has a hard time focusing her attention when she is sick. It's normal...her Daddy is the same way when he is sick. He goes off to his own planet of sickness. It's also frustrating and worrisome for me. Because I have a huge part of my brain that knows she is fine. Then there is that other part of my brain...the autism mom brain...that is ticking away concerns and observations. And no matter how hard I try, Autism Mom Brain is really hard to shut up when Maddy acts distant.

She will be having her adenoids removed next week and tubes put in her ears. Yuck for surgery but having done part of this procedure on Maelle and seeing the major improvements, I know it is worth it.

Also worth it was our experience in the doctor's office when Maddy willingly let the good doctor look in her ears and nose. Then let him spray in her nose and shove a snake like light up her nose with minimal complaint. She was bright eyed, alert, and friendly....the Maddy that we all know and love.

Explaining to him her journey and see the shock and amazement on his face. The slow smile that crept across his face as he understood the gravity of Maddy. To hear him say what a miraculous child she is....

...that quiets Autism Mom Brain. And it makes me ever so thankful for the love and the journey that is Maddy.

new definitions.

I'm sure some of you have seen the hype and controversy surrounding the latest changes in the DSM about autism. If you haven't, I suggest you google the words "autism" and "dsm 5" and you will be able to peruse all the articles and opinions in the matter.

Basically, the criteria for meeting the autism diagnosis is getting more strict.

Some people feel this is a necessary change to stop this very media friendly view of autism becoming an epidemic.

Some feel this is outright wrong and will deny thousands of innocent kids the services that they need.

Where do we sit on this issue?

More strict or not, Maddy doesn't meet any criteria for autism. Under the more broad terms and the more narrow ones.

Yet, in that, Maddy DID have autism at one time and, believe it or not, she DID meet the very strict "new" criteria that will be defined in the newest DSM.

So while these changes don't affect us, they affect thousands...if not millions...that's the truth of the matter. And I can kinda see both sides of the issue. I can kinda understand why the scientists and doctors feel they need to clamp down on the criteria because yes there is misdiagnosing going on.

Notice I used the word "kinda."

The problem with raising awareness to an illness is that while it helps get more people the help they need, it increases the number of people diagnosed, and makes everyone more aware of how "real" the problem is.

What you don't see is when new technology develops and scientists and doctors are able to pinpoint diabetes easier or heart disease easier or even cancer...they don't go and change the definition of what any of those illnesses are to avoid telling the public how "real" the numbers are for people having those illnesses. You see excitement in the medical community at the better prevention or early diagnosis possibilities.

Am I frustrated? yes.

Because any child, whether they are have a very severe case of autism or a very mild or "high functioning" case of it, deserves treatment. All of them. Every single one. Adults, teens, kids...all deserve care.

And when you take something and make it "harder to get" - all those people lose. Lose services. Lose understanding. Lose compassion. They just lose.

Did I want Maddy labeled? No. I really didn't. I didn't want Maddy to have ASD. I didn't want her to have the Autism label if she could potentially recover. What I learned was to not shy away from that label. It's nothing. It's just a word. Autism. And now, her official diagnosis being "autistic disorder REMISSION" - i wonder how the DSM people feel about that one.

Let's be honest. I really don't have to say ANYTHING about insurance companies because they didn't pay for crap BEFORE with the broad autism definition, that surely isn't gonna change now. Since, apparently, autism is a psychological problem and therefore not a medical one. (whatever.) And whatever people did get some money from them, they sure won't get it now.

The public opinion will change. It will. Because the adversity I hear now is gross. When they find out your child had autism, they assume that it was mild and say it to your face. "Oh it must have been just a mild case of it" as if it were nothing. It doesn't make it any easier. It doesn't bring back the years of her life when she was NOT herself. And by the way, she did NOT have a mild case of it. She had a very moderately severe case. And you just belittled everything we did. And you just belittled all the people that have a mild case of autism and are struggling to adjust to life. The ones you make fun of or think are weird...they have mild autism and you're not helping them. You are mocking them.

Finally let me just say this. If the DSM people want to make autism "harder to get" - though I'm sure they say it's just a more accurate - will they change how hard it is to have cancer? (sorry cancer folks, I really am NOT picking on you) Will they make criteria for that...if your tumor is not x amount of millimeters or centimeters or inches wide then technically you don't have cancer. You still need chemo or radiation but it's not large enough to be considered cancer. You will not get your treatment paid for by insurance companies because your case is mild. So foot the bill, do your treatment, fight your fight...but don't complain because you really don't have cancer. You just have a mild sign of it.

Ouch? yeah. I thought so.

happy new year.....

So sorry to miss the New Year! I will be writing a new entry tomorrow (too tired tonight)...stay tuned. Hope you all had a great christmas and new year! (and most of January too!