3rd Annual Puzzled Over Autism.

EEEKKK!!!

It's coming up! Our third puzzle-a-thon! It's one of my favoritest (i know that's not a word) days of the year.

This year it will be April 27 (we like the last Saturday of April) and again from 10am to 10pm - same locale...

This year we have fun door prizes too! I'm getting so many awesome things donated from all over the country! Fun fun and when Kyle gets our flyer done, I will post it!

spectrum sibs.

Tonight Eva prayed that God would give Maddy just a little excitement about the upcoming puzzle a thon and for the entire month since this is her special month. I wanted to chuckle about the fact that Eva was asking for Maddy to receive excitement, being that Maddy is usually one big ball of excitement about pretty much everything from the sun rising to her bubble gun. But the honesty and the heart and the depth of her prayer left me fighting back tears.

It's hard to explain autism. Super hard.

What is harder is to explain it to the siblings.

Why does Maddy get so much attention? Why does Maddy's rules seem to be different than ours? Why does everyone have a shirt with Maddy's name on it? (The later coming from the twinsie, Maelle, miss fashion diva...that while she will wear her sister's shirt, there is always a begrudging moment when she puts it on and knows it doesn't have her name on it. And yes, Dr. MAL's suggestion of getting some Maelle tshirts has been heeded and we plan on creating a special Spectrum Sib day just for her and Eva)

It's gotta be a rough gig. Really. Here is this sibling that you love and yet can be overly emotionally charged, crabby, overstimulated, bubbly, distant, lacking personal boundaries, controlling, giving, and - in Maddy's case - FULL of nonstop chatter - always talking over you. They get special classes. They have special "toys". Everyone asks about them. And...to top it all off, you are semi "in charge" of them whenever the parents aren't around. But not in a way that makes you feel powerful...in a way that gets you in trouble if you miss something that they did and your parents ask you about it later.

Tough gig.

And I know it.

And don't worry...many many many many many many many people feel the need to remind me of it too.

"don't forget about your other kids too"

as if I would somehow forget they existed and that they have needs and that they want their sister to be "normal" just as much - if not more - than I do.

So then, as if I haven't spent enough time worrying over my parenting decisions for Maddy and her spectrum remission and regression and remission and why is she still chewing on that stupid pencil and biting her sweatshirt zipper....as if I haven't spent enough time worrying over my skills at spending equal time with each child and my husband. As if I haven't tried to at least remember to brush my teeth in the morning, I have to worry about how people perceive my parenting skills for the spectrum sibs.

"Oh you sure talk alot more about Maddy than Eva or Maelle."
"I doubt that, maybe you weren't paying attention to that conversation."
"why are Eva and Maddy in piano but not Maelle?"
"Because she's 4."
"So is Maddy."
"Yes, but Maelle doesn't have any issues with her finger strength or dexterity. Piano is a fun way to encourage Maddy to use her fingers independently and give them strength."
"But what about Maelle?"
To which I want to scream: NEWSFLASH but it will never be fair. Ever. Never ever ever. No matter what I do or how I try. I can never make it even. All I can do is my best and hope that is good enough.

I have spent the last 3 years agonizing over this....probably more like 4 years when we really get down to it. And thankfully tonight, listening to Eva pray for her sister to feel loved in "her special month" helped me breathe a little.

Eva may not understand even a sliver of what Maddy's autistic remission is and why she gets more attention or why sometimes Maddy is the way she is....but it doesn't matter to her. Maddy is her sister and she is proud of it.

Sometimes the most freeing words are said by six year olds.

Many times I find Eva and Maelle off whispering with each other while Maddy is absorbed in book land and while this used to bother me...that they were excluding Maddy in some way...truth be told, Maddy probably wandered off and decided she was done with imagination and wanted some time to just be with her books. Now I smile to know that even though our journey is different, and we're not in the midst of therapies and ABA and chaos...I know that they have each other. Eva and Maelle will have a bond that Maddy will never truly understand. Just like Maddy has a bond with many of her spectrum buddies that they will never understand.

Sure, it's not always roses and there are many times when I hear "but it's not fair" in our house. I'm finding that slowly we are all melding into our family norm. Each of us connected by a unique bond to each other. Sealed by our Heavenly Father. Thank you, God that even in the hard times, you bring the smiles and the laughter and the Hope of the future.

small moments.

I haven't updated in awhile. Mostly because I needed to take a much needed break from analyzing everything Maddy was doing or not doing. I just needed her to be Maddy and me to be Mommy and that was it. It's a luxury that very few families get when they live in the spectrum world.

I have much to tell about our recent trip to Walt Disney World and what an amazing time we had and I will. I promise you all a post about that. But not right now.

In the midst of being parents and raising typical kids, we lost sight of few of the legislative things that were happening in our state. Last night we had a brutal wake up call to just how terribly off course things were going. We may be able to take a break from analyzing our daughter but the greater responsibility of helping others can not be shoved aside.

Yet I do not feel up to writing an honestly very angry entry about how things are going in legislation.

What I do want to say is how thankful I am for every small moment.

Last night I was furious and frustrated about legislation and laws and bills and vouchers and all that garbage. I have never been one for politics and now after following them, I dislike them even more. I am not a debater. I don't like to argue for the sake of arguing. I avoid confrontations. I don't like any of it. Except when my kids are involved...then Mama BearKatt comes out.

Eventually I decided it would be best for me to just go to bed. I did all I could do. Emailed and social media'd all of the appropriate people. Time to just call it a night and trust that God was working over all of it. So in my night time routine, I walked into the girl's room to check on them before going off to bed. My girls all sleep in the same room - three little girls in a little room. Not because we don't have room for them to have their own room but because they CHOSE to be close to each other. It's pretty darn sweet.

I started with Eva in her daybed, covers askew and one leg hanging over the end like usual. I covered her back up, shoved her leg back onto the bed and kissed her forehead. Maelle on the top bunk with no covers but the one baby blanket over her face. That girl has slept that way her whole life. Super hot but has to cover her face. I remember how terrified I would be when she was a baby and she would shove that blanket over her face and be snoring away. And then Maddy girl on the bottom bunk in a tangle of at least 4 different blankets. She always wakes when I untangle her. Last night was no exception.

Her eyes fluttered and then opened. She looked at me and instant recognition rang to them and her mouth quickly formed a very huge and satisfied smile. Her eyes shined as she whispered, "Nigh-Night Mommy."

"Nigh-Night Maddy." I whispered back with a matching smile.

"Sweet dreams," she said, lazily.

"Sweet dreams to you too, I love you Maddy."

"I love you Mommy. I'll see you in the morning." and she nestled in with a happy smile while her eyes closed again.

My heart melted. It was exactly what I needed at that moment. Reassurance.

Today she practiced piano with her wonderful teacher and again I saw another moment of reassurance. Here she was learning to use each finger independently with music involved. It is a wonderful thing for OT. It challenges her finger strength and forces her brain to make each finger work independently yet together. She has the mental capability to do it...she already knows all the notes when you ask her. It's a matter of teaching her fingers to do it.

Would I have imagined 3 years ago that we'd be teaching Maddy how to play piano??? No. And each time her little fingers work hard at pushing those keys, my heart melts.

So even if the bigger picture isn't actually what I want it to look like, (the bigger picture being that MV has gone on to help other families get the treatment they need) at least we know and can be assured that what we did was worth it. That it works. That because of all that time and effort, we changed a life. I need to remember this when the bigger picture has so many setbacks. We didn't help Maddy overnight....we can't help everyone else overnight either.

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.