Autism Over the Years

A new year, a new  beginning, and new hope... How do I not hope?  How do I give up on that boy/man, that God has given us?  Where do we quit and just say... it's time to stop believing in miracles?  The human spirit is an astounding thing.  Just the teeniest little bit of hope, can keep us going for days on end.

It's Christmas time... and as I write this, so far Britton has spent all the hours that our other children and grandchildren are here in our home, hiding in his room.  He didn't want any part of it.  Noise, making messes, people talking and laughing.  I am trying desperately to be the hostess, the mom, the grandmother, the wife.  But there's a dark shadow in the back of my mind, my son is not part of this.  He is hiding away.  All this, unsettles him.  It seems to raise his anxiety, and basically freak him out.  It's all, just out of order.  Not in his normal routine.  We took his food in to him.  We even took up some of his presents.  (He didn't open any of them)  We use to try.  For years we tried all kinds of things to get him to be part of our world.  We finally accept, (I'm trying to finally)  accept that he cannot do it.  I'm sure he has wondered when we would finally get it.  WE are the slow learners.  It sure wasn't because he wasn't trying and trying to tell us.  I guess because we are his parents and WE WANT for him to be part of anything we enjoy.  Any family event.
I got it a few years back, but it took a little longer for Randy, (his dad) because that man is not a quitter.  He loves so fiercely and so sacrificially that giving up has never been an option.  I keep saying, "we aren't giving up, we are accepting."  It's hard to believe that's the truth I suppose.  I am always reminding myself that Jesus taught us that God is on the side of those who suffer.  We can rest assured that whatever grieves us, grieves God more.  That when we long for relief from so much difficulties, God longs for it more.

“Yesterday is gone.  Tomorrow has not yet come.  We have only today.  Let us begin.”  ―Mother Teresa

We struggle with the question of whether Britton will ever be better, ever learn more, ever heal his gut... ever get past this autoimmune encephalitis?  A struggle between, hope and fear.  A struggle between faith, and facts, a struggle between what is, and what should be.   Our attempts at treating all Britton's conditions, feel like the Whac a mole game at Chuckee Cheese.  We whack one, only to have the other rear it's ugly head.

Autism,  "islands" us, and I promise you, for anyone involved in suffering in some form, scale does not matter.  I read that studies show that people who suffer with someone at their side, live twice as long as those who suffer alone.  Not only that, but they are able to endure twice as much pain when someone stands beside them and cares.  It's almost like that person endures part of the pain for them.  I am reminded that Jesus said, He would never leave us or forsake us. He is always standing beside us, helping us endure.   I hope our constant presence at Britton's side does something to help him endure.  God knows we are vigilant.  We have gotten old watching him suffer... we have learned much in this land of suffering.  Yet, I  can't find any where in the Bible where Jesus told the sick to accept their fate, and just deal with their suffering.   He always, always, always, walked up and healed them.  I will not, give up believing that through whatever means, He will do the same for Britton.  If not in this life, than certainly in the next.

“Those who do not move, do not notice their chains.” 

Yes, it's Christmas, and he is 24.  We have had 23 Christmases with autism.  Nine of those we spent at Texas Children's hospital, it  seems forever ago, and also just the other day.  So much has changed, and that change is really what we have learned.  He isn't really any healthier than he was back then, we just don't take him to the hospital much anymore.  Now we know, that the medical community doesn't really know what to do about most of the things that happen to Britton.  AND, if you tell them he has autism, they almost stop trying to help.  We experienced that on two separate occasions this year, when Britton had seizures, and a near drowning,  the medical community basically stood by and did nothing.  Seriously, they did nothing.  He lost 50lbs in 6 months, and they honest to goodness, the Lord as my witness said, "It's just part of being autistic."  Then they refused to do a lower GI.  I mean, really?  It's so scary, how they just don't seem to want to treat people with autism.  I don't know if it's ignorance, or some strange fear.  Whatever it is, it's not good for families like ours.  It's true that gut issues accompany autism, but that is certainly no reason not to treat them.  No reason to leave a person in pain, just because they can't tell you how bad it's hurting them.  50lbs of weight loss is an extremely serious symptom.  But if you're autistic, and God help you if you are also unable to talk.... there will be very little help for you.  I read that a man who had survived the tsunami in Japan where an unthinkable number of people died in a matter of minutes. (19,000)  This man, told anyone who asked him, that the only possible answer is that God overslept that day.  Every time I think of God, "oversleeping" it breaks my heart.  Those of us who know God, know He never sleeps.  But this man, his pain, his despair, could not be reconciled with a God who watched what happened, awake.  His only rationale, is that God had slept through it.  I so understand that feeling.  It is a difficult battle, understanding.  Poor Job, did the same thing.  He cried out directly at God and asked for an explanation.  "Why?"  That is the question isn't it?  I once read a story where a man suggested that perhaps God had another world, and so on occasion he neglects this one?  It just doesn't line up with the grace and love of Jesus.  All my frustration, and questions, put me in very good company, the prophet Jeremiah, so frustrated, demanded of God, "I would speak to you about your justice."  Oh how often I have felt that one.

Yet it's the mercy of God that still astounds me.  Days that I cannot go on, He will find a way to encourage.  Today I received a poem, somehow I've never heard it before.

Heavens Special Child

A meeting was held quite far from earth,

It's time again for another birth.

Said the angels to the Lord above,

This special child will need much love.

His progress may seem very slow,

Accomplishments he may not show

And he'll require extra care

From the folks he meets way down there.

He may not run or laugh or play:

His thoughts may seem quite far away.

In many ways he won't adapt,

So he'll be known as handicapped.

So let's be careful where he's sent.

We want his life to be content.

Please Lord find parents who

Will do a special job for you.

They will not realize right away

The leading role they're asked to play

but with this child sent from above,

Comes stronger faith and richer love.

And soon they'll know the privilege given

In caring for this gift from heaven.

Their precious charge, so meek and mild

Is heaven's very special child.

(author unknown)

Wow, just wow.  It helped.  It's been some really hard days.  Although we look forward to being off work, we also know that we will be working hard at home, because, well...

Holidays are just HARD for those with disabilities.  They are hard because we have to keep Britton's world in order.  We get up, we go to work, he goes to his facility and we do it all exactly the same.  On holidays, it's all different.  People in the house, mom and dad trying to sleep late.  (7am) Eating at different times.  It's just hard on him.  This poem helped bring it all back into perspective, and a tiny bit of encouragement really can go a very long way.

“The harder the conflict, the more glorious the triumph. What we obtain too cheap, we esteem too lightly; it is dearness only that gives everything its value. I love the man that can smile in trouble, that can gather strength from distress and grow.” 
― Thomas Paine

Speaking of struggles, and triumph, and hope.... last January we found a doctor.  A doctor who specializes in autism.  A doctor who has two children on the spectrum, and has fought like a momma bear to get them well.  Although she practices in Florida, we visit her through Skype each month, and we went to see her the last few weeks of November.  She is a respected physician and pediatrician who has practiced more than 20 years.  It was so refreshing not to be afraid of Britton's behaviors in front of a doctor.  She studied him.  For THREE hours, she watched his OCD behaviors, his visual stimming, his frustrations.  She did what doctors use to do, she cared about our family.  She even believed she could help Britton.  Now there's a novel idea.  We are currently doing so many tests, and it all feels so overwhelming, but she did give us hope.  HOPE, that maybe we could if nothing else, get him some relief from so much pain.  He deserves that, all humans deserve at least that.  She also suggested a communication technique that I gave up more than 15 years ago, because it had been proven fault.  Apparently, it has made a resurgence, and she felt Britton was perfect candidate.  I am struggling to find a way to make it work.  It could be a miracle.  I'll keep you posted.

“All it takes is a second and your whole life can get turned upside down.” 

It's true that I believe that all my son's illnesses can be traced back to his MMR vaccine.  Yes, I do believe that.  He was vaccinated in the morning, and he went into anaphylactic shock at 2am the next morning.  The journey began that morning.  History certainly staggers under the weight of suffering brought about by human ambition, or hatred, or lust.  It's hard for me to believe that a pharmaceutical company, and a government would conspire to do such evil to it's own children.  Yet, it's happened before.  When Harod believed that a Jewish king would be born because the wise men told him it had been foretold, he killed thousands of Jewish boys under the age of two.  Just to be sure no one would undermine his power.  Who knows why our government has allowed such atrocities, yet our government continues to cover up those who expose the truth over and over.  This past year when the researcher for the CDC came forward with the truth, that he had lied about the results of his tests in relation to the MMR and autism.  He disappeared.  You probably never heard about it, as he was silenced very quickly.  He just didn't want to go to his grave with so many deaths, and so many ruined lives on his hands.  God bless him if he is still alive.

2015 is  here, and believe it or not, I have hope.  As one of the first families to experience autism, I pray we will be some of the first to see some real help, some truth, some change.  I believe that as the tide of parents who refuse vaccines becomes larger and larger... and the government closes the noose around their necks to force vaccines.  Parents are beginning to ask more questions.  Unlike my family, we had no information, we had no internet.  Parents today have the ability to find the truth if they will only look for it.  Families like mine, continue to tell our stories, if for no other reason than to save a few who are willing to hear.  I would try to save my worse enemy from autism.  I would still give you anything I have learned here in the land of suffering, if it would save your child.  Yes I am adamant.  Yes I am certain.  Yes, I will save anyone who will listen.