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I am the crazy mom of five boys.  Four of my five boys are on the autism spectrum. Neuro-Diversity rocks!!!  I cook, I clean, I blog, I breathe.  Yup that is about it.  If you want to catch a glimpse of our crazy world you are more than welcome but don't say I didn't warn you.

Sunday, September 4, 2011

So I Married As Aspie-part cuatro


Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

-Emily Dickinson



Hope, such a simple word, a word that has lost so much meaning in today’s culture of immediacy.  Hope, such strength, such fragility, all summed up in one syllable.

Hope means to hold on when everything around you screams to let go.  Hope means to look for the good, the peace, the rest ahead while in the midst of the bad, the striving, the endless night.

I wish I could say that I held onto a nearly dead marriage all those years out of hope.  I wish I could hold this as one of my limited virtues.  Alas, that was not where I was at when we left the story.  No my hope had faded; I had surrendered to a life just as it was.  I stayed out of sheer stubbornness and conviction. I had made a commitment till death do us part and only death would separate us.  But hope can be found even in the darkest, deepest places.    Hope found me when I had given up all hope.  It came in a form I least expected.  It came in the form of my son Jamie.

I wrote briefly of the traumatic pregnancy I had with the twins.  That story alone would take a book to tell in its entirety but for brevities sake I will skip pass the details and go straight to major points.  After falling down a flight of stairs at 25 weeks, I was hospitalized for the majority of the remainder of my pregnancy.   Twin A (who is now known as Jamie ;) sack was leaking amniotic fluid.  Wanting to give the boys the highest survival rate possible they monitored the fluid for any sign of infection and had me lying on back on bed rest in the hospital.  We made it to 35 weeks.  Once he was born he was placed on oxygen because he was not breathing.  After a few days in the NICU (neonatal intensive care unit) another miracle of miracles happened.  He was breathing and ready to be released.    I noticed instantly that Jamie was different from Alex.  Alex looked for Jamie and wanted to be close enough to touch him.  As young as a few days old Jamie pushed Alex away.  Alex like most babies would respond to your voice….Jamie very rarely did, I chalked all this up to personality differences.  Around one Jamie began to babble as infants do.  But by one and a half he stopped.  I began to notice more disturbing things.  Jamie did not respond to stimuli the way our other kids did.  One night I was putting the rest of the babies to bed.  Jamie had taken a longer nap than the rest so I left him in the playroom to play a little longer.  The sun went down as I was doing the bedtime routine and I did not realize it.  When I walked into a dark playroom I was horrified at myself as a mother for leaving my baby to be in a dark room.  Most babies would have cried out or at least made some sort of commotion. Not Jamie.  He was sitting in the exact same place I left him staring blankly into space.  When he would fall and get hurt Jamie would not cry.  Instead he would start picking at the wound.   He actually pulled his stitches out one by one when he cut his knee open.  Barely a day after getting the stitched they had all been pulled out.  Around two Jamie began to scream for hours on end.  I could not figure out what was bothering him.  He also began to beat his head on the floor, not a toddler temper tantrum beating.  No he would beat until it was bloody if I did not restrain him.  I would hold him all day long, rocking him and counting in a monotone voice (the only way I found to calm him).  We brought him to several doctors, all of whom diagnosed him as severely autistic.  We were not given much hope for him.  Although not definitive, they felt the best bet was to medicate him to control the violent melt downs and to give anti-seizure meds as a preventative measure.  I refused to accept that this would be my son’s life.  My husband and I both began to research autism and decided to send him down the educational route.  We were blessed to be in a great school district that had a fabulous early intervention program.  ABA therapy, speech therapy, OT, PT, and a fabulous teacher made a world of difference.  The meltdowns began to lessen and slowly the real Jamie that was trapped inside began to emerge.  I remember vividly the first time he hugged me on his own.  I still cry when I remember the first time he told me he loved me.

Throughout my research I kept coming across information on Aspergers.  My oldest son Paul was now in Kindergarten and he was not assimilating well at all.  In fact, he was regressing at an alarming rate.  Through our research we began to suspect he was on the spectrum as well.  Again God was with us.  Paul was placed “by chance” with a teacher who specialized in SPED kids. In fact she had only that year returned to the regular classroom and had won awards for her work with autistic children.  She called me in for a conference and told me she thought Paul should be tested for Asperger’s Syndrome.  Since we had already started to suspect it ourselves we had no problem sending him for testing.   Sure enough, Paul was the poster child for Asperger’s (normally Aspies are not diagnosed this young.  Paul was a rare case because of his extreme giftedness and extreme Aspieness-for lack of a better word).  Now both my hubby and I began to research even more about Autism and Asperger’s.   The more I researched the more I learned how to communicate with my boys.  Simple things like keeping my emotions in check completely when dealing with them.  People on the spectrum have a hard time placing emotions and understanding them.  The more emotional I became the less engaged they were….in fact often they would ramp up and begin to melt down.  Another simple thing was I had to be explicit and precise in what I said to them, especially Paul.  Aspie’s tend to take everything literally.  When I once told Paul it was raining cats and dogs out he went to the window and looked out.  He turned around and said “It’s not raining cats and dogs, it’s raining a lot of water” Some of this was age appropriate but with him it was to an extreme.  I learned I had to prepare them for every, single change way in advance.  My boys were learning coping skills and how to mimic appropriate social responses. If I sprung a change on them they had no idea how to respond thus pushing them into a meltdown.

I need to break here and explain what an autistic meltdown looks like.  When I say meltdown some of you are thinking of a toddler screaming in the mall, others of you have watched a special on Autism and have seen a child screaming or flapping their arms or beating their head on a wall.  In the special they cut to the frazzled parent, back to the child and then to a commercial break.  In real life there is no commercial break. In real life, a meltdown can go on for hours.  In real life you look into the eyes of your child and realize they aren’t there, they have no control over themselves and it is your job to deescalate them and keep them safe at the same time. The causes for meltdowns vary.  It can be overstimulation from their environment, anxiety over an unknown situation or  often their minds race.  They can’t turn their brain off and it drives them crazy.  People often expect the Aspie can control it.  The truth is that in the middle of a real meltdown they are not in control, they are not even there; my guys often have no memory of what they did during a meltdown.  One night, not all that long ago, Paul was being driven absolutely crazy by the sound of the crickets outside.  Now short of going out and hunting down every cricket in north TX there was not a lot I could do to ease the situation for him.  We tried to drown out the noise, we tried to distract him but nothing worked.  He had a complete and total meltdown.  He tried to run out the front door completely naked except for his whitey tighties.  In the end we cocooned him with a blanket.  This works really well for several of my guys on the spectrum, they actually asked to be wrapped up like a burrito now when they start to feel out of control.  Cocooning is taking a blanket and wrapping the child tightly in it.  Only their head and feet pop out (like a burrito).  The pressure calms them.  I don’t know why but it works.

 My husband has given me the perspective of the person having the meltdown.  He has says it is very overwhelming,   Paul describe the noise and light as actually bringing physical pain that  you can’t escape it.  Hubby describes it more like being in shock, He says there is a serious disconnect between what you are thinking, which seems very clear and what you are able to get out.  .  Outside all we (the people around) see is the meltdown in progress. 

Ok back to the story…..

It was becoming more and more obvious to everyone (doctors and us alike) that my boys were not the only ones on the spectrum.  My husband was a Class A AspieJ  I began to apply the same communication techniques to him that I was using with the boys.  The results were amazing.  I also began to apply the same grace to him that I gave my boys.  Some of his obsessions began to have some sort of reason to me, the fact he rocked back forth almost violently as he fell asleep (making me somewhat seasick in the process) now made perfect sense.  He wasn’t just ignoring my needs or wants.  He honestly could not even see them.   When he obsessed on some particular thing when we talked, when he thought I was lying when I rounded 3:05 to 3 o’clock, when he flipped his coins over and over again, when he could not decide what flavor of ice cream he wanted, when he fought even the tiniest change of schedule, when he took every word out of everyone’s mouth literally, it all began to add up for me. Suddenly I knew how to communicate with him, suddenly I wasn’t going crazy….It wasn’t in my head.  Now I had hope that things could get better.  I just needed to learn the right language. 

I learned that I had to prepare my husband for things in life the same way I did my boys.    A good example would be when my son Sam wanted to join the boy scouts.  Sam asked me almost a year before he actually joined.  I slowly began to prepare my husband for the change.  I would once and while point out what a great organization Boy Scouts was, I would occasionally say how nice it would be for one of our boys to join.  At first his response was completely negative.  One day he looked over and said “I know what you’re doing but it’s not going to work this time!”  Finally when it was time for Sam to join I asked hubby the question “What do you think of Sam joining the Boy Scouts?”  He looked at me and said “I’ve seen this coming for a while.  I think it will work.”  Now if I had just asked him right away the answer would have been an immediate NO!!! Not for any good reason but simply because he was not prepared for the question.

Our relationship underwent a radical change in dynamics.  Honestly, this amount of management would be devastating to a typical relationship.  Like I said before, we are an outside of the box kind of relationship.   What works for us will not work for many relationships out there.  But there are relationships that resemble our out there; relationships that more often than not fail because no one is around to say that there is a different way.   The divorce rate where one partner has Asperger’s is over 80% according to some studies.  Other studies suggest the same rate is true with parents of one or more children on the spectrum.  We have beaten the odds.  We have succeeded through God’s mercy and grace.   That is not to say we have a perfect relationship.  There are still things we have to work out, still wounds that are healing.  But we now have hope.  We now have a roadmap that works.  It is my prayer that a couple that is just beginning their journey will read this blog and understand that it is possible.  All it takes is hope, a willingness to change, a willingness to give up your idea of what marriage should look like and embrace what it can look like, and a willingness to give and receive grace.    Lots of love-Kristine 
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