Tuesday, November 25, 2014

the R word.

Tis the season....for Regression.

If you have been following Maddy from the beginning of her journey, you would know by now that Maddy has "regression spells" for lack of a catchy phrase. (we'll call it - The Icky R)

Every 90 days Maddy goes though a period of time where she has extreme behavioral regression. She is combatant, angry, unfocused, and flat out FRUSTRATED with the world. This happens every 90 days or so of her life. And always, it ends as abruptly as it starts only her brain has conquered something new. Rhyming, skipping, solving Mario levels, learning social norms - all of these things have literally emerged overnight from one of her regression periods.

The last one we had was very minimal and she emerged with better handwriting skills. The one before that, in April - was awful. It was the worse one that all of us had encountered. It lasted two weeks and was the worst two weeks I have experienced in a few years. It was very rough and I don't accurately know what she learned to end it all.

I was beginning to see signs of this one coming. Sometimes she just had bad days - we all have those - but day 2 confirmed it. She is in it. Thankfully, so far, she has been sleeping which is new - usually her regression periods always accompany lack of sleep, making her even more irritable.

Yesterday, I saw tears in her eyes as she said to me, "Mommy, my sisters just can't understand me. I can't get my brain to explain me."

And I nodded and hugged her. As the tears fell from her eyes, I could feel the inner struggle inside of her.

Isn't that one of life's greatest fears? To feel like no one understands you? That you are alone.

I held her tight and whispered to her, "Don't worry, Maddy. I will always work to understand you. I will always be your Mommy and I will always do my best to help you. Always."

She pulled away from me and smiled a bit. This cheered her up. Because she is six. And at six, as long as Mommy understands then all is well.

I will not be enough for her in a few years.

In a few years, the evident social awkwardness that is already emerging will be even more stifling.

At home we work on simple things like 'playing with dolls' as Maddy doesn't have much of a concept of why or how to play dolls. I think she understands it on a surface level but ultimately the purpose of pretending to have conversations and continually dress and undress dolls seems insignificant to her. At least when she plays a video game, she has a purpose: Defeat the level. There isn't much of a concrete purpose to playing dolls. So we work on it. She earns Wii time for playing dolls nicely with her sisters. Not because I want her to be a robot but because I want her to attempt to experience what it is like. To have that social time. To practice conversations. To practice the elegant fine motor skill of dressing dolls.

Many days I am forever grateful for Maelle and Eva for their patience. For their love. For sharing the excitement of a video game. Maelle hates video games but everyday she also practices "playing video games" with Maddy so that they can bond closer. Not because I asked her to or I make her. Because she wants that time with her sister. My heart overflows. Many Barbies have become friends with Mario stuffies so that all can play.

This morning in the middle of the Icky R - I heard Maddy exclaim "MAELLE - I WISH YOU DIDN"T EXIST!"

Maelle, in tears, "But Maddy, I LOVE YOU. I do everything for you!"and as I separate the two, I hear Eva say to Maelle, "Maelle, you know she doesn't mean it."

And I am conflicted. I feel upset and horrible that Maddy yells such things and yet proud of Eva to quickly take on the consoling role to help her sister.

I know ALL siblings - especially sisters, I am told (I don't know, I never had a sister but I probably did tell my brother that I hated him sometime in our childhood) say these things. They do. They are children. Their emotions are worn on their sleeves and are ready to burst at any given moment.

I know they all have these moments.

Yet coupling it with the Icky R - when Eva and Maelle will experience Maddy shouting, screaming, hitting, biting, and everything else - it doesn't help the situation. And it's really nothing that I can accurately describe because most people who have not experienced Autism Meltdowns or Regression will only see a very bratty child.

I have been told, "wow, are you sure she has/had autism? She just seems like a brat to me."

I kept my mouth shut but I wanted to say something. But yet, i can't say that I wouldn't have thought the same thing before Maddy.

It's tough. We will get through it. Maddy will come out better and have an acquired new skill. We will all adjust. Life with Maddy is great - she is the brains of this operation - we all know that. Eva is the dreamer and Maelle is the heart.

It doesn't come without tears.

But nothing worth it does. 

Tuesday, November 4, 2014

exceedingly exceptional.

Maddy is soaring through Hooked on Phonics! Tomorrow she will be half way through the Kindergarten Series. Yes. In less than a month, she has managed to conquer many of the issues that she had been dealing with previously. We shall see how she does when the reading rules get more detailed and there are exceptions but for now, she is cruising.

I admit that I was hesitant on it. What parent who homeschools isn't hesitant when they seek out a new curriculum? The answer is none. Sorry, admit it - homeschooling parents - curriculum planning is enough to form some serious ulcers if you let it!

But curriculum has always been an issue with Maddy. Not in the bad sense, just in finding one quick enough for her brain. So far, we have done fairly well. It is amazing to watch her mind work.

(I must digress and say that it is a gift to watch ALL of my girls' minds work. Anyone who watches a child learn something for the first time can attest to just how amazing that is! Regardless of child!)

She was "prescribed" some Eye Patch Therapy...which consists of her playing her Wii games for 1 hour a day with an eye patch on her stronger eye. The gamer was thrilled that a doctor would actually prescribe something so awesome! I laugh. I would probably be equally thrilled to be able to play games for an hour out of my day because the doctor said so. Justin or Maelle? It would be torture for them!

Overall there aren't too many signs of a Visual Processing Disorder and Dr. B said it was really too early to tell such things. So we take what we know now, help her learn to read, help her strengthen her eye, and prepare for things later on.

If anything, this whole thing taught me that we will never truly be "in the clear" with Maddy. How can it? Every 6 months, she is evaluated. Every 6 months we search for clues to look further into how her brain works. It is an amazing tool to have. We are incredibly blessed for the Team that we have! Always working to help Maddy be Maddy in THIS world.

Every 90 days we are reminded how blessed we are. How can 90 day perpetual regression be a good thing? Because it reminds me to never take it for granted. Because her behavior every 90 days while her brain is conquering something reminds me how she could be all the time. How blessed we are for God's grace, healing, and the knowledge of ABA.

How schedule, follow through, tough love, consistency, rules, rewards, and prayer can make or break a day.

We will never be "in the clear" and it's ok. I would never trade it. Regardless of outcome. She is a miracle. She is a blessing.

She is Maddy. 

Tuesday, October 14, 2014

study those eyes.

We met another incredible professional last week as we took Maddy for her eye assessment. Dr. B, we will call him, was such a great doctor. He was very interactive and pleasant as he did his overall assessment of our girl.

You never know what to expect when you go to these appointments and you meet a "new" doctor. One bad experience will make you hesitant at the meeting of any other new doctors.

I still remember Maddy's first PT assessment when they asked another doctor to come in and take a look at Maddy's toe walking.

He stepped in the room. Listened to the PT therapist give her assessment. Then without much thought he says, "Well, she seems pretty autistic to me. What's her diagnosis?"

I will never ever forget that. I can't remember the doctor's name, his face, his...anything...i just remember those words and being shattered inside.

Such was NOT the case with Dr. B. He was great. His initial evaluation had him very unconcerned at this point. She was too young to worry yet about dyslexia and when he heard that I had switched her reading curriculum to Hooked on Phonics, he was very pleased. As much as I want to laugh at those infomercials from my childhood - Hooked on Phonics is actually a legitimate phonic teaching tool for kids learning to read. He loves the program.

He tested her depth perception and was blown away by her 30 second testing with a 100% accuracy. Most kids would only dream to do it that fast.

We began explaining more of her story after he said that it was very clear to him that she was highly intelligent.

Then you could see the wheels churning in his brain...he got excited...more testing options came to mind and now we have Maddy set up to take more evals tomorrow morning. There are some new tests being done with kids who have autism (even in remission....she will always be considered to have it) and he asked if she would be a case study for them.

Of course.

When has Maddy never been a case study? And the more I can learn about her brain...the better for both of us.

More to come. For now we take a sigh of relief in knowing we are doing all we can for her. We buckle down at helping her learn phonics and await results to see just how we might help her more.

Thank you for your continued prayer and support!!!

Saturday, October 4, 2014

i before e, except...

Things have been relatively steady in the life of Maddy these last couple of months...I wanted to write quiet but anyone who has ever met Maddy knows that she is anything BUT quiet! Yet, for the most part, things have been more of the same. Maddy being her boisterous self and cruising through the summer and turning six years old.

In August she had her yearly evaluation for autism spectrum disorder to make sure she is still classified as being IN REMISSION: Residual State, which she was found to be (praise the Lord) and she also had an academic evaluation as well. This time, she was evaluated by a different reviewer who did not know any of her history. She came in to the testing being viewed as a typical functioning child who just turned six and was entering 1st grade.

This was a huge milestone as given our small town and our network of people, not many people don't know that Maddy is/was on the spectrum. Not many people can look at Maddy innocently as any other six year old. We all look for signs and quirks and ways that maybe that spectrum will show up. It's true. It just is. It's a fact. No one can lie to me and say they have never looked at Maddy and searched her for signs. And it's ok. I expect it. I do it myself. I can't imagine other people not.

And sometimes not knowing history can help other issues come to the eye that may or may not have been seen so clearly.

One of Maddy's quirks is her literal brain. She can be so literal. And in that, we have discovered a learning disability.

Let me back up a bit.

We chose to homeschool last year when Maddy (and Maelle) entered Kindergarten. That choice was based on a very large variety of factors. Many of them due to the nature of our family and how we are such a winter family. We do all of our recreation (dog sledding) in the winter as a family. So having the kids in school during those prime months just didn't work. Another reason, in the very many, was that Maddy needs to be taught with as few distractions as possible for her brain to fully focus. She had previously been mainstreamed in public preschool and did great (she had a great teacher too) but it was very clear that in order for our little social bug to flourish academically, she needed individual instruction without distraction. And given the quickness of her brain, she was often bored and found various ways to get herself in trouble.

The last year I watched Miss Maddy excel at mathematics and flounder at reading. There are too many variables in learning to read. "a" does not always sound like "A" sometimes it sounds like "ay" or "ah" or "uh" depending on each rule. "ph" sounds like 'F'. "Read" can be present or past and said entirely different.

With Math...1 is always 1. it doesn't change form. It is solid and regardless of rules 1 is 1. 1 + 1 always equals 2. There are no substitutions. No exceptions. 1 + 1 = 2 end of story.

We took our time, used a curriculum that is very ABA like so her brain could see the small steps to form the big steps. We would time and time again get to about lesson 60 of 100 and have to start over again as she would become so frustrated that she was in tears.

So when the letter came back yesterday that Maddy has a reading disorder, I wasn't overly shocked. I could see that one coming. What I didn't see was the possibility of a new diagnosis....

Visual Processing Disorder

What is it? Basically there is a disconnect between what her eyes are seeing and what her brain is comprending.

We don't know yet if she has Visual Processing Disorder....she will be scheduled to see a specialist and have evaluations and such.

It was incredibly difficult to read the letter that is usually full of glowing remarks of Maddy and this time to read that her evaluation 1.5 years ago had her above average to now being average and poor in reading.

Many people experience this with their child...your child has a learning disability. okay. you adjust your life and move forward. It is not life threatening. In the grand scheme of things....it is minor. I have friends who are dealing with their daughter having a very life-threatening brain surgery in December and another friend who has a very young son who most likely has some form of muscular dystrophy. So what is the big deal? A learning disability...so what.


We have been running this race since 2010.

And though I don't post as often. There are still daily issues. She still has oral sensory issues where the kid chews on everything. Everything.

She forgets how loud she talks.

She forgets social norms like personal space.

She has intensely sensitive hearing so we always have to make sure we keep her prepared for loud noises.

She wanders.

Every 90 days she goes through a behavioral regression where she does not sleep and becomes exceptionally difficult.

So no....it's not life threatening.

And I would not change my life for the world and I am incredibly thankful to have her perpetual sunshine in my world!

I just didn't see another sensory issue waiting around the corner.

Yet...look at how far she has come. She spent much of her toddler years trying to become a toddler. Her preschooler years to be up to par and beyond the bar of her peers.

So here we go to another round of testing...and therapy...and tutors.

We will press on. This was never a sprint. This is a marathon. And we may not be marathon runners but we are mushers...and that is a hardy bunch.

So we again ask for prayers as she goes through more evaluations and more testings. We are so thankful for everyone remembering us in this journey. God is Good. He will sustain us. We will press on. 

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.