Monday, March 2, 2015

ready, set, go.

We are in the last week of our old normal.

Next week Maddy starts therapy beyond what we have been doing at home.

And if I must, let me digress for a moment and say that the at-home sensory therapy seems to be helping. She is mastering her Moro Reflex "Starfish" movements and I can honestly tell a difference when she has been consistent with her Starfish and when she has not.

I know. It sounds nuts.

How does moving like a starfish for a few moments reconnect the brain and help her manage her emotions, mood swings, frustration and improve reading skills?

I honestly don't know. But it does.

She is reconnecting parts of her brain. God has made our bodies crazy amazing.

When we finally get scheduled with OT - I am sure she will get a new movement. She will be excited and resistant at first but Starfish has become a very important part of our day.

Say what you will about Yoga or Stretching activities - call it what you want, but as long as your heart is set on Jesus, it's not evil or pagan. It's just movement. I can praise God for the glorious ways he has made our bodies and I shouldn't be surprised that stretching and meditating on the Lord will help you rewire your brain. It sure helps rewire your heart. 

Dr. MAL agreed that most of what we are dealing with is sensory - she sent us home with the Vineland (diagnostic tool for ASD) to fill out and send back (ooops...better get on that!) and we will go back to her in May.

Maddy saw Jen in Speech last Thursday. It went well enough. Maddy is definitely vocal. She expressed her opinions to the point where I literally wanted to take her out of the testing and correct her sassy responses to the testing that she found beyond boring. (UGH< IS THIS OVER YET?)

We are awaiting test scores to see if she will need speech services but she did get signed up for a Social Skills Group that starts next Thursday. 1 hour long peer group with other kids with various needs in the social skill department. I hope she likes it. She needs help in this area.

It will be a weekly group so that will be trip 1 to the city and when we get OT scheduled that will make trip 2 to the city for the week.

I am not complaining. I will, always, do whatever is necessary to give Maddy the skills and tools she needs in life to - not just be successful - but to be happy.

That is about all I can update. Some days are great and others are awful. Such is life with kids, yes, I know.

I have to just reflect upon how drastically different and unimaginably beautiful Maddy has made my life. 

She sees the world beyond normal and when I catch a glimmer of how she sees it - it sure looks different. Sometimes beautiful and sometimes ugly. We have work to do. All of us. Maddy doesn't just go into therapy. We all do.


Sunday, February 15, 2015

the moro of it all.

I don't usually - or haven't before - came to this blog with an I don't want to attitude.

Typically, blogging has been a release for me. A time to let all those thoughts out and just purge my soul of what I want to say but just couldn't quite do it with my speech.

Lately, I feel so defeated when I sit down at my computer and open up blogger.

Everyone likes a champion.

Everyone likes a story of someone who has defeated the odds and WON!

No one likes when the champion has to return to the fight and the odds are stacked against them again.

That's probably why sequels tend to tank when it comes to movie productions...but i digress...

I felt very much like a defeated champion on Thursday.

We had to return to Rehab Therapy after a 3 year reprieve.

We had to return to a place that I hoped I would never ever have to return to.

All Wednesday night, I was a mess thinking about having to walk that hall...go down the elevator and return to a place that harbored so many hard times - even with the good outcome.

Thursday morning came and instead of worrying about how I would feel when we returned to that place, I had to deal with the reality of life. My car broke down. And I scrambled to find a replacement to get her to her appointment. We walked 3 blocks in -40 windchill to find the replacement and get on the road again.

I wanted to give in and just go home. It was not an option. She needed to be at this appointment and I was going to get her there. The weather was cold. The roads were icy.

We arrived 15 minutes late and we rushed through that hall, hurried in the elevator and into the appointment.

I didn't have time for the dramatic re-entrance.

We spent over 2 hours at that appointment learning and testing Maddy.

As I talked with Stephanie, as I listed out all the sensory concerns and issues that we were dealing with, they seemed to pile upon each other like Mary Poppins unpacking her suitcase. How did they all fit in that tiny little package?

Stephanie was great, as always, and made notes while simultaneously testing Maddy's OT skills. When I finished, I could physically feel my stomach sink.

How did we get here?

An image popped into my mind.

A sunny sky was over us as we unloaded everyone on to the beach for a warm day in the sand and the water. Maddy found her way to the shore and we watched as she played in the low tide. Splashing and having fun. The mother in me worried a bit because she can not swim, but I relaxed as the water was low and there was no concern. Flash forward to minutes later, the tide rolls in and she is neck deep in the water, thrashing for help and she is miles from the shore.

How did she get so deep so quick? Where have I been?

The mother in me is furious with myself. How could I possibly have watched her become so distracted with the sensory world that it got this bad? What have I been doing all this time?

Many different tests later and Maddy was allowed to go play for a bit in the ball pit. I focused on everything that Stephanie was trying to tell me. She failed the sensory tests...all of them. We will have to go back to square one.

The Moro Reflex

I invite you to read this article about what the Moro Reflex is.

We need to start back at the basics. She clearly has an un-integrated Moro Reflex. So she is learning a technique called "Starfish" that she repeats 3 times a day for 30 days to help integrate her Moro Reflex again.

Here is a youtube video of what Starfish is.

I'm still trying to wrap my mind around it all and that is why I am redirecting you to other articles. I don't know why I can't seem to explain it in a clear manner...but i can't - so please read/watch those.

Meanwhile...

We go back to see Dr. MAL tomorrow.

We go for speech evals and more OT information in 2 weeks.

We are hoping to meet with the hospital social worker as well...we have no services anymore because Maddy has aged out of everything.

So not only are we having to reintegrate back into the world of therapy - we also need to rebegin our lifestyle of trailblazers.

I am not, at this time, going to go into details about services and costs as I don't have all the information yet. What I am familiar with, Maddy has aged out of....

What I do know is that her diagnosis is changing and it's heart breaking.

And isolating.

I really just want my happy Maddy back. She is not happy these days and that is the most heart breaking part of it. Anyone who knows Maddy can describe her as "happy" and when we first lost her - we lost the happy....and to see the happy disappearing makes it disheartening.

A dear friend called me today to say that "you didn't miss anything! We haven't noticed huge changes either until recently...so don't take responsibility for something that wasn't there. You didn't miss anything. You jumped to alert the minute things did seem different."

That means alot. As a mother...I feel like I need to carry the 100% burden of missing things. It is an impossible task. I am exceptionally hard on myself. I don't want to fail her - or any of my kids. I want her to not just survive life but to LOVE it. The good, the bad, the hard, the easy, ALL of it. To experience it. And be joyous that she has a Savior who loves her and will someday call her home. And to see the smile fade from her face and the happy laughter to leave her lungs makes me sick. To see her in tears and frowns destroys me. No - not all kids will be happy 99% of the time. But Maddy usually pulled a solid 95%....this is so not her.

I just want her. Nothing less.

Wednesday, February 11, 2015

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. 

Wednesday, February 4, 2015

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

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."