this is real.

Three and half years ago my daughter had moderately severe autism spectrum disorder. She did not make eye contact. She did not point. She would not play. She did not sleep. She said a handful of words and that was all. The only typical thing she did at the tender age of 2 was run and eat.

It's surreal. I don't know if it will ever stop being surreal to me.

I have moments of pure joy when she looks into my eyes, rubs the hair away from my face, and says to me, "I love you, forever, Mommy. Always. I will never leave you. Just you and me, Mommy. Forever. Okay?"

I have moments of heartache when all three of my girls giggle and laugh at the table when they talk about when they were babies and they ask what 'baby names' they called each other. The giggle when I answer that Maddy didn't really talk to anyone. She called her twin "Baby" but that was about it. No names for her oldest sister. It's hard for me to think about the almost alien gibberish she would make when she got really excited and would stop her feet really fast. These things that I can't really share with them. Not now. Not when they are enjoying the memories of the past.

Moments of frustration when she has chewed yet another pencil to bits. The chewing is the last to go. Almost every "characteristic" has faded but the chewing. She still loves to have something in that mouth.

Moments of memoir when a phrase changes meanings for her. Recently I lost my temper with her and when I was apologizing later, I said, "Sorry I lost my cool." She quickly said, "No, Mommy, you're still awesome!"

Is this what it is like to raise a child who was once so lost and is now found?

Tomorrow we go back to see Dr. MAL for her regular 6 month check up. Am I concerned? Not necessarily. Yes, there is a part of me that ALWAYS gets nervous going to these appointments. I love Dr. MAL but ugh...still nerve wracking. (bring on the vineland and GARS)

Yet as I sit in the office and listen to the Barbie conversations going on in the next room with all three of my girls...my heart smiles.

the sister with the issues.

Recently I was talking with an acquaintance of mine who just found out she was having baby #2. We were discussing the "dos and the don'ts" of people who visit post baby and how most people, while their intentions are kind, frankly just don't "get it" when it comes to proper post baby visits. I'm sure any mother has had this conversation and while it was more of a vent session than anything personal, it quickly struck a chord with me.

She was discussing certain family members that brought along their sister who has some issues to stay for an extended period of time right after her first child was born. She was trying to figure out how to politely tell them that this time around they are more than welcome but the sister was not. She didn't mean to be mean but the sister's "issues" where a bit too much to deal with while she is dealing with post baby hormones.

Then she stopped. Looked me straight in the eye and confessed, "Well, she has Asperger's."

I was caught off guard and nodded slightly as I tried to calculate in my mind just how to properly respond to this.

She went on stating the girl was very "high functioning" and she "had a job" but she also makes these weird moaning noises and has an assortment of other medical issues on top of all her Asperger's ones.

"The girl is really nice and all but she's alot to deal with after just having a baby. I'm not used to that and I didn't grow up with that and I really don't want to be around that after I just had a baby."

More slight nodding on my part as I was wrapping my mind around this.

And suddenly I had this sinking feeling in my gut. Suddenly I had an entirely new "thing" to worry about. As if I really needed to find MORE things to worry about!

Maddy is no longer considered to be "on the spectrum" but she still has her quirks. The way she gets overly excited and talks really fast when she is with a group of friends. How she will bring up random facts that not everyone knows. How she will repeat something over and over until you stop and acknowledge that you heard her. Even then, she may continue saying it just to say it.

Yet suddenly I had this overwhelming fear that someday Maddy would be the sister who had some issues to one of my future sons in law (I KNOW I am stretching here...but this is how my mind works...because worrying about my potential sons in law's perceptions of Maddy is totally relevant...you know, because she's FIVE.) And he would be having some kind of conversation like this one day.

Obviously it wouldn't be about post baby hormones....but you get the picture.

What if Maddy's quirks that make her lovable to us make her annoying to everyone else?

I know. I know. I know. Autism or not, there are plenty of things that siblings annoy each other with. There are plenty of things that they just cannot stand about each other. So why does this bother me?

Because usually those things are something that you can change - if you want to. You can stop picking your finger nails or saying "like" a thousand times in a conversation. You can stop rolling your eyes or using finger quotations when you talk. You can. It is possible. You are aware that you do those things...maybe not overly aware of how OFTEN you do them, but you know that you do them.

But spectrum quirks are not things that are easily changed. Yes, they can be changed but not nearly as easily as a habit. It's hard to change your brain's tendency to go 500mph while you are trying to have a conversation. You can try...you could be successful...but it would be alot easier to stop grinding your teeth than making your brain slow down.

And I know....why do I care what other people think? Why do I care if they think she is annoying?

Because I am human.

Face it, everybody cares what other people think. They may say they don't. They do. And of course I care what people think of my kid.

If anything that conversation showed me that there is so much more work to be done to gain awareness of the spectrum disorders. Something that I already knew but it still rocks me. I don't expect every person to be like "Quick! Let's all learn about autism! Let's be super accepting!"

I would also assume or hope or pray that my daughters would find a man who would love them for them - crazy family and quirky sister included.

But it still bothers me. And it still worries me. It's hard to turn my Autism Mama Bear Brain off most of the time.

Yes, this is what we "autism moms" think and worry over. Really.

And yes, life carries on and my mind will wander to the next worry soon enough. I've decided to give this one over to God and trust He has a plan. So, then, why do I worry about it?

Because I am human.

wandering soul.

It's 5am and as I deal with another round of insomniac episodes, my heart is troubled.

There is an 11 year old boy with autism missing from a community very close to us. The boy had told his grandmother that he was going to go outside and when she checked on him later, he was nowhere to be found.

Search crews did as best they could all through the day yesterday but stopped when it grew dark, hoping to regroup and find the boy in the morning.

My heart aches.

I can imagine that this family has gone through something like this before...the "where is he now?" type of panic that runs through your body - but never this long. Never overnight. I know his mother and father are not sleeping tonight either.

It's common - too common - for children with autism to wander. To hide.

And it's terrifying.

Maddy has her episodes as well. Usually they are relevant to the fact that I muttered "it's time to go" and didn't remember to either 1) wait until I am absolutely ready to leave to say those words or 2) say "wait for everyone else, Maddy" or I will find myself looking for her.

Recently I had an adventure of "Looking for Maddy" when our new neighbor came over and I was giving her some fresh spinach from our garden. The girls were eagerly telling neighbor Char all about life in general and it wasn't until Char left that I did the usual Maddy surveillance check and didn't see her anywhere. After a routine house and yard check, my heart began to pound. It took me and the girls 20 minutes to find her. Hiding in the back of Char's car in her own mini game of Hide and Go Seek.

Only she didn't tell anyone else that we were playing that game.

I was terrified.

My backyard is next to a nature preserve and my mind could only imagine where she had gone too. And I thought with dread about the river that runs through it.

This past week I lost her twice at the city pool. Once because she was told (by me) that if she went down the slide, she could get her coveted Princess Luna pony - only they didn't do slides at swimming lessons that day and as I wondered how I would deal with her being upset about her not being able to "earn Luna", I realized that I couldn't find her anywhere. My eyes darted to the water, praying not to see her at the bottom of the pool. No. Checked all the locker rooms. The playground. As I was walking to the car, I found her at the top of the slide waiting for someone to catch her.

The second occurrence happened when I went to get Eva out of the locker room and left the twins with my grandma, mentioning that we were gonna go home after I got Eva. I came out of the locker room with Eva and found Maelle and my grandma but no Maddy. Minutes later, I found her in the car by herself, waiting to leave.

Even at VBS, they assigned one helper just to make sure Maddy didn't wander off to do her own thing.

From experience, I know that this boy's parents have gone through similar situations...but I'm sure nothing that has lasted longer than minutes. Nothing like hours. Nothing like overnight.

Please, Lord Jesus, bring that boy home.

More information about the missing boy can be found here: http://www.inforum.com/event/article/id/408466/group/homepage/

Maddy - Mission Possible - Portrait of Hope

mission: possible.

Our little Maddy Girl is in the news again: CARD is featuring her this week in their Mission: Possible series! Trying to share hope for other families out there!
Click here to see her youtube video!

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.