that one entry where i go off on a tangent because i am frustrated.

I have been putting off writing this entry for nearly a week.

Because I don't have anything nice to say about Friday's appointment.

And I want to follow that old adage that goes "If you don't have anything nice to say, don't say anything at all." I was raised on that proverb.

Yet, I want to say something.

So I guess, I will go with this. There is still this huge misconception in the world that doctors no longer treat people or families with autism like they used to. That the old days of "your son/daughter will never (fill in the blank)....." are gone.

They are not.

Those doctors still exist. And I say "those doctors" because this doctor referred to Maddy as one of "those kids" (with autism) not once, twice but multiple times at the appointment.

"Those kids" can have normal EEG results. No one really knows why "these kids" think they way they do or why "they" have more headaches or stare off more.

And it bothered me. It bothered me so bad I wanted to scream.

She isn't one of "THOSE KIDS." She is MY KID and her name is MADDY.

He painted a very bleak - there's nothing i can do for you so I don't know why you are wasting my time - picture and sent us out the door. He does not believe she is having silent seizures. She had a chromosomal blood draw for a test that he basically said meant nothing 95% of the time but we did it anyway. That 5% means something to us.

I have absolutely nothing nice to say to that man. I hope I never see him again.

There is absolutely no reason to treat anyone like that.

I feel for every parent out there today who learns that their child has autism. I pray they don't encounter the types of medical and psychological professionals that tell them "they don't know why these kids have autism nor is there really anything you can do for them". I have seen with my own eyes, the hope and the joy and the reality that treatment can do. My child when from not speaking to full sentences and eye contact. Recovery/Remission does happen.

I don't care about why or how she got it. She has it. So let's move forward from that. There is no time for why. There is no point for why. There it is.

Yes, we need to discover as a society why and how autism occurs but for all of us IN it - it doesn't matter now. All that matters is how to HELP them.

So what happens now?

That's what has been buzzing around both Justin's and my own head. She is going to OT tomorrow - and despite recommendations to see a new OT person, we are going with what we know. The new place had a horrible time getting back to us with scheduling that I got annoyed and gave up. We'll go with where we were and see what they say. She will go for her speech evaluation at the end of the month.

We go back to Dr. MAL on Monday.

I am frustrated and annoyed with how difficult it is for a parent who actually WANTS to help her child. Imagine the kids of the parents who don't put in the effort. Because "those people" exist too.

You have to be so careful when you group people. You have to be extremely careful when you talk about autism. The spectrum is vast and every kid on the spectrum is unique just like every one of us is unique. I don't like calling Maddy "autistic" because it does not define her. She HAS autism - she isn't autism. She can only represent herself and her life on the spectrum. Is she one of "those kids"? No. She is Maddy and she has a mild form of what is turning out to be Asperger's Syndrome after being in remission for Autism Spectrum Disorder. Just like Eva isn't one of "those neurologically normal functioning kids"  - she is Eva and she has been healthy all her life.

Am I being hyper sensitive? yes.

I don't care.

You can't be an advocate if you don't love the individuality that you advocate. 

the middle of Oz

I will admit that I was naive to think that Maddy's journey through autism was over. I honestly can tell you that I thought we were done. These past four months has taught me that her "autism story" is not over.

That many times when we/she is faced with new challenges, the reality is that it won't ever be truly over. Not as much as I would hope it would be.

It made me realize, we are just starting a new chapter in it. It is a journey and not necessarily a destination. This new chapter of her life is just that - new. And like most new things, we are scared of it. Resistant to change. 

We are deep in the investigative part of the story. A new plot twist has arose and now we must use our detective skills to figure out how best to help the heroin conquer her foe. 

This time it will take us to the neurologist. (Cue in ~the infamous Wizard of Oz ~ and Mayo being the Emerald City). This "Wizard of Oz" travels though...so there is a plus. Because going to a pediatric neurologist is kind of scary like going to see the Wiz. Exciting and yet terrifying. All the things you may find out. All the new questions you may discover. All the unknowns.

And like Oz...there is so much build up to see one guy. Waiting lists, medical forms, anticipation. But he is just one guy. And I need to stop raising the bar of expectation. Not to sound negative but to be real. 

I always get nervous taking Maddy to someone new. The autism world is tricky and there are SO many views on treating autism because the spectrum is SO VAST. The trick is to find one who agrees with your method of thought and your child...because there are an infamous variety - from avoiding GMOs to music to dolphins to hugging to ABA...they are all over the board.  

So on Friday we are off to the see the neurologist (cue in: "We're Off To See the Wizard") in hopes of some new perspective of the brain of Maddy. Prayers appreciated. Updates will follow.

We have faith that this middle of the story will be full of the Lord's powerful work just as much as the beginning was.

"But the Lord stood at my side and He gave me strength" 2 Timothy 4:17a

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.

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

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."

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. 

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.