Thursday, January 22, 2015

onward....no...wait.

Living where we live means waiting for things.

Sometimes this is a good thing and other times it is not.

There is only one pediatric neurologist that comes to our hospital (our is a loose reference since we have to drive 100 miles to "our" hospital). He drives up twice a month from the Mayo clinic in Rochester, MN to see his patients up here. The hospital put us on a wait list to see him February 5th but being 4th on the list means....it is highly unlikely that anyone will give up their spot.

They scheduled us for March 26.

I don't take waiting very lightly. And the idea of waiting 2 months to have an EEG to see if anything going on with Maddy can be helped in other ways than behavioral modification was not going to work with me. When you are trying to rule out the "unknowns" - waiting 2 months is not helpful.

We called back, called around and got moved to February 24th at the Mayo Clinic. Yes, that means driving 7+ hours for appointments that may only be minutes. This surprised the hospital schedulers...

That doesn't matter. I will drive how ever many hours that I need to in order to either get answers,  rule out or factor in other possibilities.

So we are scheduled to see the neurologist late February. Back to Dr. MAL in early February and we are still waiting on places to call us back about her speech and OT assessments...which doesn't impress me. I will call again tomorrow and if I don't get a response, we will go somewhere else.

Waiting doesn't sit well with me.

I have never been a patient person.

Daily struggles continue....and all I can do is carry on and TRUST that the Lord has this all under control.

Sunday, January 18, 2015

realities.

Many kids, who are lucky enough to go through ABA and have incredible results and reach Remission or Recovery - get to stay there.

Some kids do not.

Because autism is an individualized disease. It is not neatly wrapped up in a series of words, expectations, explanations, or categories.

Because people are not that easy to compartmentalize.

I am going to admit that my worst fear has snuck its way back into reality.

Autism is sneaky.

My gut knew we needed to see Dr. MAL to confirm what I was suspecting but my brain wanted to convince my gut that I was paranoid. That I was so focused on her development that I could find a way to make her seem worse (for lack of better word) than she really was.

And my gut was right.

So my brain is reeling.

You see, the brain is constantly growing. Constantly changing. Constantly adapting to life. It should not simply stop when we reach certain milestones. It needs to keep working. Sometimes the brain can adapt and grow all on its own and sometimes it cannot.

Maddy is struggling to adapt to the changes that naturally occur in the brain at the age of 6-7....and there is a reason why most studies say that ABA is MOST effective before the age of 7....so MUCH needs to be accomplished.

Now it isn't full blown scary regression or anything like that. I know we are not that far in it. But there are obvious signs that she is having sensory issues, social issues and communication issues. And she has become very Aspergers-ish when it comes to obsessions. (Mario)

Dr. MAL wants to rule out Absence Seizures as well  so we are in contact with Maddy's Pediatrician (Dr. S) as well. (Absence seizures are short periods of "blanking out" or staring into space and like other kinds of seizures, they are caused by abnormal activity in a person's brain.)

We will go back to Speech and OT to get evaluations as well. Clearly there are things going on and we want to know the best ways to address everything before we can make a clear action plan.

But the reality is: there needs to be an action plan.

To be honest. it hurts. You never want to see your child suffer and many people don't understand what kind of "suffering" a child with autism has. Simply put: if you were unable to communicate with ANYONE on how you were feeling, your thoughts on life, your general NEEDS, or just have a very simple connection with another human being - would you not think of that as suffrage?

To be surrounded by a world who you didn't understand and couldn't understand you.

To want to have peers who connected with you. But can't make those relationships because your brain just doesn't' communicate like everyone else's?

Everyone has had a time (or several times) in their life where they felt left out, alone, misunderstood. Everyone has had a moment where they were made fun of or not included. Everyone has gone home to their mother at least ONCE in their life, with tears in their eyes saying "Why don't they like me?"

Imagine a life of perpetual "what is wrong with me"?

As a mother, I want to protect my child and I want my child to soar. To teach them all I know and help them accomplish what they love and dream about.

I will never stop fighting for Maddy.

The thought is daunting. The reality is terrifying.

She is worth every bit of it.

To say I'm tired already would be an understatement.

But I have to remain ever thankful for the time and the development she has had. That she can communicate with me - even if I can't quite understand everything - even if it comes after an angry outburst. That I had 4 years of relatively good times.

So now we go back into the trenches. So much is unknown. One thing I do know, God is with us. He has the plan. and HE will prevail.

As our verse has always said: "I have fought the good fight, I have finished the race, I have kept the faith." 2 Timothy 4:7

Sunday, January 4, 2015

the fine line.

I know that I have blogged about this before.

I just can't get it off my mind.

And it's not a pity thing.

I think it's just an ever constant reminder. For myself and for those around me.

Things are never as easy as they seem. Nor are they ever what exactly they appear to be.

My daughter has autism. Yes, she has what is called Autistic Disorder: Remission (residual state). People assume this means she is *snap your fingers* back to "normal functioning" and that is just not the reality.

The reality is not that at all.

What it means that 4 years ago she had a moderately severe form of autism where she did not speak, she did not function, she did not at all possess any of the mannerisms of a 2  year old child. Some age levels placed her at 6 months old.

What it means is that a team of us worked very hard to get her to the Remission status that she is now.

It does NOT mean she isn't without her quirks and tendencies. It does NOT mean she does not still have meltdowns. Or have auditory sensory issues. Or think with a very literal brain. Or have a social disadvantage.

If you compare then and now: you will see stark and very drastic differences. You will.

And if someone would have told me then what life would be like now, I wouldn't have believed them.

I know this.

It does not, however, make the regressions, the aggressions, the meltdowns, the communications deficits, the social awkwardness any easier.

We are well beyond her normal length of regression time. And I could argue that the inconsistency of the holidays (Christmas and New Years) probably added to it.

However, her behavior is: not okay.

I am worn down. I am in tears most days. I am feeling very defeated in how to help my girl.

We will be calling Dr. MAL and will see what she advises or finds. Until then, we will be on strict schedule mode. What does this mean? It means that every second of our day will be planned, arranged and scheduled. Bedtime cannot budge. We cannot be spontaneous. We must make the day as clearly defined as possible. It is really the only thing that helps Maddy improve and to be honest, I hate it. I am not a "scheduled" person. I just am not. But if I must be, I must.

People don't get it. I know that. It's OK. I wouldn't get it either before I had her. And the worst part is, how completely and utterly isolating it is.

I'm sure people assume I am self absorbed. And really - the REALITY - I have to be "Maddy absorbed" - for her to work out of this - she has to be 100% completely managed. Yes, I said managed. It sounds awful but it is the best way to describe life with a child with autism - regression, remission, or severally affected - and as much as I want her little creative wings to fly....right now they would crash her into a tree.

So I return to Psalm 46 on my knees and in tears for my heart weeps for my girl.
 "God is our refuge and strength, a very present help in trouble. Therefore, we will not fear, though the earth should change and though the mountains slip into the heart of the sea; Though its waters roar and foam, though the mountains quake at its swelling pride. Selah."

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.

Only.

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.