Wednesday, March 19, 2014

the unexpected.

The big time gaps between posts are a good thing. Maybe not for you guys...but for us it is! It means that life is "normal" and there aren't major things to write about - other than the usual I cannot believe she was sooo lost and now she is sooo back and she is awesome! posts.

And honestly that is how life has been cruising along. Maddy being Maddy - still with her oral issue of chewing things and sometimes quite literal in her thinking but overall, just the average kid. She is impulsive and active. Always smiling and happy. A nonstop chatterbox - hard to imagine we had to WORK to get her to talk...now it is absolute WORK to get her to STOP TALKING!!!

We chose to homeschool her...and all the girls this year. It was the best fit for our family and our love for dog mushing continues to increase so when winter hit - we hit the trails with the dogs. Easier to do when they kids are stuck in school all day.

It has been a blessing to watch her learn and see how her brain works. She is an "all or nothing" kid. So if she can't spell "ate" correctly the first time...expect massive fireworks out of her. She does not like getting anything wrong. But that is manageable. Really, who likes to be told their answer is wrong?! None of us, really. Her emotions are on her sleeve and ready to bounce at any minute.

Man...do we love her!

This past weekend, we had a first. It was the first wedding for our girls to attend. They were all so thrilled (what girl doesn't love a wedding?!) and excited! The dress! The dancing! The ceremony! Not to mention that both the bride and groom are very close to me - the bride worked for Justin one summer and both were youth kids at one time in the youth group I volunteer with.

All was well until we reached the reception. I did my best to prepare and explain every part of the day so there would be less confusion. Kids like to know what to expect...especially my kids. So I figured they were aptly prepared. I was wrong.

I forgot about one detail.

Maddy has very sensitive hearing. A sensory setback that for awhile hindered her from public events due to noise. If she knows it will be loud, she does better. She went to her first basketball game this spring and did amazing! Yes, the buzzer bugged her at first but once used to it...she did great. This was something we (Justin and I) never thought she would be able to do. Basketball games are noisy!

The kind of noise at the reception was typical of any kind of gathering with a bunch of people who may or may not have seen each other for awhile. There were conversations all over the place and Maddy absolutely shut down.

She climbed into my lap, hugged her head against my chest, and plugged her ears. Every so often she would pop her head out and then back she would go. I was confused at first because this was so not normal for her. Then I put my "sensory brain" on and realized that hearing bits and pieces of several people's conversations was absolutely mind numbing. Overwhelming. Noise.

I thought back to the moment hesitation that I had at the door of my house before we left for the wedding...I had paused wondering if I should bring her noise cancelling headphones (we use them for concerts and parades and anytime we know it will be loud) and then shrugged it off, thinking...she's fine.

ugh, mothers do NOT ignore those crazy instincts!!!

So we sat in the corner of the reception. Maddy hugging me and zoning out as she fingered my necklace. A moment that I had not experienced in years. A moment of pain. A moment of exclusion. My heart was aching. I wanted to converse with people but would not dare leave her. We all know that when Maddy is not her happy self...she wants me...and only me.

Thinking back to that moment makes me fight back tears. It caught me so off guard. So unexpected. I felt like I failed to protect her. Sure, kids need to fail sometimes. They need to experience loss. They need to feel those things that make them human so they can grow. Yet, when it is something so biological, so beyond their control...us mamas want to protect. We just do.

I tried to remain as upbeat as possible. It was just a wedding reception after all...if this was the worst of it...really...so she hates big crowds. I hate big crowds too...but for other reasons.

Then as if God sent her Himself, a friend of the family came over and began gently and quietly having a conversation with Maddy. It was a bit forced at first. Maddy didn't want to have much to do with her...but given who she was...eventually she slowly grew more and more out of the shell she had encased herself in for protection. She began to chatter about Mario (oh such an "Asperger's type" of subject for her...she will go on forever about Mario) and smile up at her friend.

And somehow I found myself sitting alone at the table as she had bounded off to play with her friend and dance (!) on the dance floor with her.

The music started...the conversations died...and life was okay again.

God, You never cease to amaze me as You work in her life. I thought I had an idea of what God's love looked like until Maddy came along. And then He showed me an entirely new depth and level that I could not fathom. He showed me how He truly does save the lost. How He is always working. Always loving. Always doing exactly what a Father would be doing for His child.

Never, ever, despair...God is always working. Waiting is the hardest but His plan is the best.

Thursday, December 12, 2013

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.

Friday, September 6, 2013

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.

Thursday, August 8, 2013

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/

Tuesday, July 30, 2013

Thursday, April 18, 2013

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!