Monday, October 23, 2017

The Eye of my Little Storm

I have realized in the past several years that I have no real problems in life.  

Really.  The story I am about to tell you is one of those things that first world people "endure".  

But I love and try to serve, and far more importantly, am valued and loved by a God who cares about my circumstances.  My little, everyday, fairly ordinary circumstances, and for that I will be grateful for all of eternity.  When He knows that I really, really need my Daddy, He shows up in utter and absolute perfection, leaving me bewildered, breathless, and immensely humbled; starstruck at the enormous love He pours over me.

I think of all the times that my children run to me with some "problem" that is so very big to them, and an annoyance to me, and they generally know exactly what I think of it.  I am not a great sympathizer of  non-logical things.  I am a work in progress.

Not so my Jesus. He is infinitely patient with me.  So, so patient, and good, and kind.

 This past July 4th we gorged ourselves at a barbeque fit for a king, prepared by friends, and my oldest shoveled it in.  Going back for more and more, he was finally satisfied, and we left.  The next morning he was sick and I suspected food poisoning.  He was a lot of what it said he should be on WebMD, and since that makes it so, I figured that was the problem. Except no one else was sick.  A quick inventory of ingestibles revealed that he had not eaten anything special, so I thought perhaps he picked up a virus.

I was busy that day helping a dear friend with something that really was a very important thing.  As I helped her my son sat in the waiting room and quickly developed a fever.

I got him home and I began to suspect. . . . appendicitis.  I didn't know why.  I just did.  So I called the doctor.  His doctor wasn't there, so I got the On Call One.  I don't like the On Call One.  At all. I have my reasons.

I talked to the nurse, who left a message for the On Call One, who was supposed to contact me, "soon".

Nearly three hours later, I called back.

My biggest fear when moving from my comfort zone in the Midwest to the Pacific Northwest in a tiny town on the coast was not tsunami's, wildfires, or endless rain.

My biggest fear was that one of my very bestest favorite beloveds would get emergency ill, and I would be stranded with a very small hospital and no trauma center, unless you want to take a helicopter far, far away.

No one knew this that I know of.  But that's what it was.  

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~I call On Call Guy.  Something has happened in the past three hours.  We have other things going on.

I am CONVINCED it is appendicitis.


I just knew.   

And I know it needs to come OUT.  

As in, I knew like I knew when I was in labor with my kids. It is an unshakable knowledge.  And I am fooling around with On Call Guy, the gatekeeper for my healthcare.

On Call Guy finally relays, "It is probably a virus.  He will be OK."

"Ok, thanks", I placate.  I am done, and we are going to the E.R.

Ah, the E.R.  The E.R. has a reputation here for, shall I say, "extremely long wait times and questionable judgement."  

My fear is becoming reality.

Out of respect, I call the hubby. "Well, how do you 'know'?  Really??  I mean, what if you run clear over there, and it is nothing?"  I feel like I am going to jump out of my skin.  But I say, clearly and somewhat definitively,  "OK.  I will wait for you to get here. Then you can see what you think." He would be home in about 40 minutes.  

In the meantime, I am pacing my house. I am restless and irritated and unable to relax, so tightly wound and on edge.

And then it hits me:  this-----this wildcat inside me---- is a GIFT.  I'm not supposed to relax because if I relax, this will get missed. This is my job, to get this kid to the hospital and make sure this thing gets OUT.  And that is OK.  

This realization makes things so much better.  Hubby comes home, assesses (he is in health care) and too, is convinced.  So I am off.

The long E.R. wait?  Less than 3 minutes.

First doctor I see?  "The appendix needs to come out."

One time this child was under anesthesia.  He had to be given medicine to bring his heart rate up.  I was told then to make sure I told every surgeon ever to be very careful.  

He got the best surgeon.

No problems with anesthesia.

From check in until the last stitch was a grand total of something like 6 hours.  In less than 18 hours we were home.

And the whole time, I KNEW it had to come out.

But more than that, I KNEW that God was right there.  Oh, the peace! Never was a mama so peaceful, so serene when they told me that they would take him to surgery and have it out! I am less peaceful at the fabric counter at Jo-Ann's!  I was so thankful, and just, so so peaceful. 

God taught me that day: in the eye of your storm, even if it is not a big one, I love you enough to be right there with you, guiding you, loving you, comforting you, caring for you.

All I need to do is listen.

To trust and obey my sweet Lord.

My faith isn't in the good healthcare we received, but I am so thankful for it.  

My faith is in the One whose palm I rest in, whether that is here or there.

He knows your secret storm, and He will put you right there so that you can learn of Him and experience His goodness.

Ah, there is a Friend that sticketh closer than a brother, and that Friend is Jesus.

My prayer is that you know His peace.

Love to you all-----

Thursday, August 17, 2017

Just Two Boxes

When did we start putting people in boxes?  

We look at one behavior expressed in the entire lifetime of an individual that we have never met personally, and as a result, put them in a labeled box.  We close the lid, put it away in the basement of our mind, and feel pretty good about ourselves, as though we have done a service to all humanity and should be thanked for it.  We have simple-mindedly simplified the human condition.  How very nice and tidy it is now!  How very unchallenged we can be, in our existence that is uncluttered with dissenting opinions!

We don’t even have that many boxes to choose from.  Just a few.  
But that one person will fit, at least according to us, entirely in that box.

I wonder, if we examined our own behavior over the course of our lifetime, what box would we be in?  We can’t even remember what we have done in our lifetime.  Certainly we would pick our most shining moments?  Times when we sacrificed, excelled, succeeded, and shined above all?  

Surely we would not place ourselves in a box labeled with our own prejudices, our dirty secrets, our shame, our dysfunction, our weakness.  Surely not.  

Yet we know the truth about ourselves.  We know that we aren’t able to be presented in a gift-wrapped, bow topped box.  We know that we are many, many boxes, and if we are completely honest, we are a basement full of bad boxes before we are three tiny gift boxes.  

We are selfish takers.  We are worried about us, about our lifestyle and opinions being challenged, our comfort, about losing our right to self.  

And so we take others and place them in boxes, because then we can feel much, much better about our own boxes.  We are even willing to dig up the literal boxes of our forefathers, just to place them in a different box and bury them for good, throwing good and bad in the same box, burying it deep, and labeling it as bad, final, over.

You know, there are really only two people in history who were able to be relegated to a single box.

The first one is Jesus.  He is in one box labeled “GOOD”.  He is the only completely, perfectly good human being to ever touch this earth.  

The second one is Satan.  He is bad.  Always bad, and in the bad box.  He is against the good.  Jesus (the Good One) said that he is a thief, a liar, and a destroyer.  He is consistently so.

You and I? Other than the fact that we were made in the image of God, we don’t have any claim to the Good Box.  We are in the bad box.

Every. Single. One. Of. Us.

There are no black robes and gavels in the bad box.  We are like children, running around in imaginary play, judging one another by a different standard than the one we apply to ourselves.  We are largely unaware of our black box residence, and the wonderful work we do for its main resident.

And the Good Box?  Well, the man in the Good Box is different.  He does have a robe and a gavel.  But He looks at the bad box, and feels an overwhelming amount of love for the people stuck in it.  In fact He died for the opportunity to. . . . .

Rescue those bad people (you AND me) in the bad box, and let them be in His box.

“Thou shalt love thy neighbor as thyself”---- direct quote from the man in the Good Box.  

Apply the same forgiving, understanding, merciful standard to ALL OTHER HUMAN BEINGS as you do for yourself.

Can you even imagine?  

Instead of putting people in boxes,

Start thinking about which box YOU are in.

Wednesday, January 18, 2017

We need a better IDEA

I read the paper, and my breath halted at the weight of the sentence: agree to waive the right to a free appropriate public education (FAPE), and assume all educational responsibilities of your child. . . .

Whoa.  This was on us.  This was on ME.  I was to be the primary educator for my child with autism.  If I failed, he failed.

Steeling my resolve, I signed, and made one of the very best decisions I have ever made in my life.
There has been much in the news lately about IDEA, with president-elect Trump’s Secretary of Education appointment, Betsy DeVos, being under fire for a perceived lack of knowledge on IDEA.  IDEA stands for the “Individuals With Disabilities Education Act”, and is the federal government’s legal assurance that all children, regardless of disability, are to be given a “free appropriate public education”, which includes as much inclusion with typical peers in a typical classroom as is possible for their ability.  It is a well-written, beautiful, 40 -page document handed to parents and educators across the nation, and no doubt was well-intentioned in its purpose. 

Much like our bill of rights, however, the scope and breadth of its application into the lives of those it was written to protect depends much upon the viewpoint of those administering the law itself. 

When I was first handed the 40 page book, I read it from cover to cover, because I am a nerd like that.  I found nothing alarming in its verbiage, and took comfort it the fact that it seemed to actually address every possible scenario my panic-stricken, scared, mother-of-a-freshly-diagnosed-child brain could come up with, which was a pretty impressive list.  I went to the IEP meeting at my local school district, which said that our son should be placed into an inclusive preschool to enhance his verbal and social skills, and after he was evaluated, was slated to have speech, occupational, and physical therapy.  We opted to forego PT as my husband is a PT, and instead were looking forward to speech and OT.

My independent research of all things autism----and I mean ALL things-----told me that our son needed “intensive therapies” for speech and OT.  Intensive. 

I lived in a very good school district, with professionals whom I believe genuinely cared about the progress of our son.  But I was rather dismayed when “intensive” meant, “group speech therapy”.  It meant 15 minutes of OT once a week.  I believe that he had a small amount of individual speech at that time, but it wasn’t very much.  Although I really enjoyed his therapists and was confident in their skill level, there was just not enough time to allocate to what our son needed----certainly not meeting the criteria of “intensive”.

His teacher was a first year special needs teacher.  I was teaching her about our son as I was learning him myself.  She was very good to work with, and I appreciated very, very greatly her willingness to adapt to him, but I was a little taken aback by the fact that I was trusting his, and truly my, education about autism to someone who had not had a student like him before, and I was doing it in his formative preschool years. 

Realizing that more therapeutic intervention was needed, we turned to our medical insurance.  Our insurance would NOT provide speech therapy for the treatment of autism.  Insurance companies realize that public schools pay for speech and OT, our pediatrician told us, and therefore force it to be covered by the public school.  Praise be to God, and I mean that with all sincerity, He provided a private speech therapist at a reasonable out-of-pocket cost that we endured for 3 years.  OT was covered, and we were very thankful to have an excellent OT. 

Now------I want you to image dropping off your diabetic child at the public school and asking them to treat their erratic blood sugar.  You would never dream of that, right?  That is what countless parents of children with autism are expected to do.  We are to drop our children off and ask, beg, plead, and cajole to receive the services we so desperately need from the very entity that has to spend the money for them. 

Think about it---do you have to go directly to your insurance company to get your medical treatments?  Of course not.  You have a buffer in your primary care physician.  You usually get to pick your PCP.  And while your PCP is bound somewhat by your insurance mandates, he can write and intervene on your behalf and get things covered for you.

Parents have no buffer.  If you are in a great district with great staff and an awesome teacher and principal and lots of property taxes and/or federal grant money, this is a bearable experience.  It may even be a good experience.  They may helpfully and cheerfully help to bear your load, and you may have wonderful outcomes, and you may have extremely qualified clinicians.  I hope this is your experience, whether you are an educator or parent reading this. 

But if not?

If not, prepare to fight Goliath.  You will battle for years.  You will be told that his needs do not “interfere with his educational progress”, and therefore aren’t covered in the IEP.  You will become bitter, a Mama Grizzly Extraordinaire.  You will fight and fight and cry and grieve and fight and become angry and fight until you can’t fight anymore to get what your child needs. You will be “that mom”, when you never ever wanted to be “that mom”.  You just want your child to get the help they need and deserve.

When I was in multiple waiting rooms for multiple therapies, I would hear conversations among parents regarding what the school was providing for one child in one district, and what they weren’t in another.   It ran the gamut from equine therapy (higher end tax base zip code) to no therapy (federal poverty level zip code). There was very little consistency from district to district. 

When we moved from Ohio to Oregon, I came to our local district with papers measuring three inches thick that included evaluations from professionals, test results, and a current IEP.  Because we home school, the only service I was seeking out was individual or group speech therapy, since his neurologist recommended speech until age 15.

In spite of this evidence, my request was denied.  There would be no group speech, even if I drove him to the appointment.  Even if I pay property taxes to my district.  Even if I home school all my children, and buy all my own curriculum, and give money to the school, but take none.   Even if the now-retired special education coordinator laughed at the notion that I expected our son to go to college.

Oregon is one of only two states in the country whose Medicaid programs do not cover autism therapies.  They have received a special waiver from the federal government that allows them to do so.  Obtaining information from the Kaiser Family Foundation, I was able to determine that of the 920,000 children who reside in Oregon, a whopping 407, 899 receive Medicaid. 

When at least 50% of the pediatric clientele lack insurance coverage for therapeutic interventions, how many skilled pediatric clinicians will set up shop and practice in Oregon?

How many of those children on Medicaid have autism?  How many don’t get necessary therapies from their school districts?  How many of them have single parents that can’t pay for/find/drive to therapy outside of the school for their children?  How many make too much money to be covered under MR/DD guidelines, but not enough to afford out of pocket clinicians?

And what clinicians would be used?  In our small county I know of only two practices that provide those therapies, and they don’t accept all insurance, or are out of network.  To find further therapy is a 2 ½ hour drive one way for services. 

The school district, then, is the gatekeeper.  The federal government allocates a portion of money to those students.  Unfortunately, the federal government hasn’t ever fully funded the program that they have made law.  As a result, many compassionate districts are simply unable to pay for the services that are truly needed to give children with autism----who face a staggering 90% unemployment rate in adulthood!------the services they need to obtain a modicum of self-sufficiency.  Overpopulated classrooms, coupled with children who often teeter somewhere between being mentally challenged while simultaneously brilliant, along with understaffing and a lack of professional development and education among some of those working with the autism population (please----I said “some”, not “all”) do not yield optimal results for many children.

In unscrupulous districts, the money never makes it to some of these children.  There is no safeguard in IDEA that specifies that X dollars must go to Student X. 


When I signed the document waiving FAPE, I was doing so to obtain the Ohio Autism Scholarship.  The Autism Scholarship is funded by the Ohio Department of Education.  It gives the control of the money directly used by those students into a more equitable partnership of the parent and the school district.  My home district was extremely supportive of the scholarship.  My son received the intensive therapy he needed in his formative years, and I believe that it has had a lasting impact on him to this day. 

The other benefit to the scholarship is that because of free enterprise, there are many, many qualified ABA and speech therapists, counselors, OT’s, PT’s, and tutors (among other things) that have started in Ohio. There is a steady stream of income to those providers, which allows for excellent care. 

Is the scholarship perfect? No.  Is there fraud?  I am certain there is.  The Bible states that “the love of money is the root of all evil”, and there is certainly a lot of money involved in the scholarship.  Are the schools that have popped up to provide an education to those with autism “good” schools?  Maybe some are, and I am sure that some are not.

But what I do know is this:  I, who know my son like the very back of my hand, had more control of his therapy choices.  I didn’t have to plead with the gatekeeper.  I didn’t have to turn into “that mom”.  All the fighting I would have do to get what I needed, I could channel into helping him become the best him that he could be. I am so very thankful to God for the opportunity to live there in his formative years.

So where are we now?  Well, now I literally have no IDEA.  I am a rogue homeschooler devoid of therapy. 

That was all in the plan.

See, in November of 2007, when my precious boy changed overnight in my eyes because of a diagnosis, I did the only thing that I knew to do:
I “lifted mine eyes up into the hills, from whence comest my help; my help comes from the LORD, which made heaven and earth.”----Psalms 121:1. 

I kneeled on the side of his little toddler bed made with his sports bedspread, the sports that just two days before was sure he would be the star of, and now didn’t know what he would ever be able to do----and this mama prayed.  I begged God for two things:  the best clinicians possible, and wisdom in how to raise him.  After all, I had begged God to give him to me, and I had desired a child to raise for His glory.  And He provided me a sweet, wonderful boy.  God knows him and loves him far better than I do. 

To that, God has been abundantly, unbelievably, miraculously faithful.  I can’t even begin to tell you. He had the best therapists and he has the best neurologist. At one point in time, three of his clinicians sat on the governor’s board for autism.  I didn’t pay a penny for all that therapy. 

And now?  When I was denied by the school in 2014, I had to go to our insurance. And our insurance, which I had been told covered autism services, denied us.

I had to compose myself on the phone.  I hurried off, and collapsed on the bed.

And I felt God there, nudging me to release my son. . . .to Him. 

I had been hanging on, trusting in therapists and interventions.  Not trusting GOD, that this was all part of His plan, and that the plan is way bigger than my tiny point of view.  With His help, I did just that.  I felt the sweetest peace and relief wave over me.  It would all be OK.

So there is no speech.  There is no OT.  There is PT, and there is a customized education (which includes speech curriculum) by a diligent mama who would give her last breath for him.  Even if she dies doing fractions.

But there is peace, knowing that I am free to do what I need to do with minimal interference.

I don’t know the first thing about Betsy DeVos.  But what I do know is this:

Some of us just want to be left alone, to do what needs to be done.  We aren’t asking for you to do it for us.  We want the freedom of choice to do what is right for our children, for our unique circumstance that doesn’t fit into your paradigm.  Please, let us keep our choice.  I know charter schools and programs aren’t always a good thing.  Maybe they are mostly a bad thing, even.  But what makes this country great is that we have the freedom to do what is best for us and to do what we feel is right. IDEA isn’t working for all of us. 

It is time to explore a new IDEA.