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."