Because of Isaac

Life is full of twists and turns.  Lots of little girls envision themselves as a mother.  Few imagine themselves mother to a special needs child.  Even if they did, there would be no concept of exactly what that would mean.

It's difficult to take stock of how exactly Isaac has changed who I am.  Many moms write about their babies and how their lives have been forever changed by the jolt of love that engulfed them during the birthing process.  They write sincerely of their experiences....but that experience isn't really mine.

Labor and delivery were difficult with Isaac.  I came very close to being transfused right after he was born.  I wanted to be overwhelmed with emotion but my body was demanding my recovery.  I don't remember a lot from those first few hours.

When I was ok again, Isaac was having a difficult time learning to eat and once that was reconciled, he was overcome with colic.  Those first few months were difficult and didn't leave a lot of room for abject joy.  By the time all of this evened out, Isaac was exhibiting the first signs of autism.  He was aloof and looked at my interruption of his day as an annoyance.  I spent a lot of time thinking I was doing a horrendous job as a mom.

So our journey has been different and Isaac's impact on my personhood has been different.

Because of Isaac, I am more compassionate.  I think...I hope...I want to be anyway.  I have learned the painful truth that things are not always as they seem.  Behaviors are just behaviors.  They do not define a person.  They are symptoms...outward expressions of what is going on inside us, how we feel, what we want, our frustrations and our loves.  Isaac has taught me to dig for the root of the behavior to better understand those whose path I cross.

Because of Isaac, I have learned that I am stronger and more capable than I ever could have imagined.  My husband and I have faced down a room full of twelve school officials bent on selling us on an educational plan that would not have been appropriate for Isaac.  We have successfully navigated through up to fifteen of these meetings in a year's time.  We have advocated and argued and wept and perservered for our son.  We have seen to it that legalities have been followed and that those surrounding Isaac believe in his capabilities.

Because of Isaac, I have learned how weak I am.  We are taught that through sheer endurance we can achieve all we ever desire via work and a determined attitude.  That's a lie.  We need each other.  I cannot maneuver this trail by myself.  I need love and encouragement and help.  I am weak, but so are you.  We are all walking wounded who need to rely on each other and on God's grace to reach our destination.

Because of Isaac, I am too honest.  I can't hide Isaac's nonconformities...nor do I want to.  I see through the facade of perfection that so many pursue.  I can't pursue that.  I am so very far from perfect.  There is no point in painting on a veneer of perfection.  I try not to make my honesty hurtful.  There is no need to be mean.  I kindly refrain from the game.

Because of Isaac, I have become somewht of a recluse.  I am not laying blame on the boy.  It has been my decision, but it has been to some degree because of the experiences I have had on this road with my son.  My honesty has cost me a lot.  Believe it or not, some people don't appreciate it when I disagree with them or when I kindly point out that what I hear them saying is something that is not legal, ethical or nice.  I have seen people hurt my son and my family and me because we are different.  It has knocked the wind out of me.  I battle the urge to retreat to the safety of home and the love we have grown there.  It is easier to stay here, where there is acceptance and where we are set up to handle Isaac's needs...where we are relatively safe from snide remarks and hurtful stares.  Its not my favorite thing to admit, but it a natural reaction...the act of retreat.

But because of Isaac....I continue.  One foot in front of the other....one moment at a time.   A minute is too long to ask...but I can get through this moment...and then the next and then the next.

Because of Isaac and his brother and sisters.  Because of my husband, because of the words of compassion and love that must be shared....because of the stories that need to be told...because we are all valuable and special and amazing...I continue.

Because of Isaac, I have met all of you and you have given Isaac and me a great responsibility.  We have been allowed to share with you and to love you and to encourage.  Isaac has led me to know you and to hold your hand as you travel your path.

Isaac's Friends

It is ironic that Isaac has over 500 facebook friends.  It is wonderful, but it is ironic.

One of the primary domains that autism affects is the area of socialization.  A deficit in socialization is actually one of the things noted when a person is evaluated for autism.

We humans are social creatures.  We are meant to interact and we seek opportunities to do so all the time.  It is that social nature that drives us to achieve those first few milestones.  As babies, we respond to social entreaties to learn to reproduce sounds, form them into words and finally talk to those around us.  Our social nature drives us to walk to mama, use utensils like a big kid and learn to share love with those around us.

That's what makes autism's affect of socialization such a nasty thing to a young child.  There is little to no desire to please those around the child.  There is no social reason to imitate.  

Isaac never minded being cuddled but he didn't really seek out the opportunity.  I still remember getting on the floor to play with my baby and Isaac looking at me with a look that said, "Do you mind?"  I still say I was the only mama of a six month old who took up baking and embroidery.  I tried.  Lord knows I tried.  I spent so much time on the floor attempting interaction with my son that my knees wore thick calluses.  I sang Raffi songs, read board books, recited Good Night Moon, played orchestrations with kid instruments, pretended, played, interacted, begged, held, hugged .... and nothing....except that little annoyed look.  Mothers of other young children who obviously knew much better than I offered their sage advice as to how to better bond with Isaac.  I tried all they suggested for surely the difficulty was with me.  Everyone else seemed to have it figured out.  And then I painfully discovered that it wasn't about me at all.

It was about Isaac and this newly named but not new aspect of my son.  It was about his autism.  Things made sense.  Autism does not much care for others.  It is narcissistic in the extreme.  Autism sees people as tools.  Autism made my son only seek me out when he needed to use me to retrieve a cup or something to eat.  Autism held his tongue as I sang songs designed to encourage language and desperately repeated "Mama, Mama."  His first real words were demands for things he needed, "Cup", "More", "Video".  We were thrilled to hear any words at all.  I think the first time he said and meant "Mom" was when he was five.

That sounds sad to say.  It isn't sad to Isaac.  It was and is to me.  But its not about me.

Autism sets everything on its ear.  Autism redefines everything.  "Friend" has a different meaning for Isaac.  Isaac's need for friends and socialization is different than mine.  It would be easy to look at Isaac and determine that he is lonely and that he is suffering from autism.  Honestly, Isaac is not lonely and does not suffer from autism.  Isaac is sometimes bored when he cannot get out and do things but Isaac doesn't mind not hanging out with others.  Isaac has never suffered from his autism.  He has only suffered (in his mind) from the stupidity of others around him (usually me and Sam) who do not have the ability to clarvoiently understand what he wants at the time and then respond to it.

It would be easy to assume that Isaac's lack of social opportunities makes him sad.  But, we are imposing our neurotypical (the politically correct word for those of us without autism) perspective on the boy.  Autism is a neurological disorder.  It is pervasive and affects every piece of who Isaac is.  Autism is certainly a spectrum disorder meaning that individuals with autism are affected at different levels.  Isaac is severely affected.  His desire for socialization is much less than yours and mine.  He does not particularly like to be around others.  He has learned to like parties because he associates them with cake and ice cream and all sorts of goodies like that.  Still after he has eaten, which he does quite quickly, Isaac again retreats happily into his world of veggies.  He will indulge those around him if they are willing to join him in watching his videos and singing his songs but that's all.  Isaac's autism is quite narcissistic.  I'm not criticizing.  I'm merely explaining.

I have always felt a need to accept Isaac for who he is.  I want to respect his personhood and his preferences as much as possible.  Socialization is important for Isaac in that he must learn to tolerate people and to successfully interact with them enough to fulfill what is necessary for him.  He needs to know how to interact politely with community helpers and folks who want to interact with him.  He needs to know how to imitate to acquire new skills.  He needs to know how to seek company if he desires it but that's it.  We as a society tolerate shy people.  We can let Isaac have his space too.

A friend to Isaac is someone who is willing to slow down and be quiet.  A friend is willing to give Isaac undivided attention to activities they would find redundant and boring.  A friend will do calendar time with the boy over and over and not complain.  A friend will list out the videos Isaac wants written down.  A friend will sing Veggie Tale songs and will not muddle the visit with what to Isaac is too much pointless conversation.  A friend will accept Isaac for exactly who he is.  A friend will then help the world translate Isaac and interpret for others Isaac's needs and wants.  Isaac has been blessed to have had a few friends.  They have earned a spot in his vocabulary.  They have made an impact on the boy for their total love and acceptance of his personhood.  As Isaac's mama, I am thankful for those that Isaac would call friend.  I love him enough to let him keep to his own definitions of friendship and love.

All Eyes on Isaac!!!!

One of the most difficult challenges we have is Isaac's tendency toward elopement.  Unfortunately, we are not alone in our struggle.  Elopement is the high falutin' educational word to describe the fact that Isaac is quiet and quick and may well leave the area he is supposed to stay in.  Most little children elope...at least for a second.  Any parent whose child has strayed out of eyesight for a second too long knows the feeling of terror that grips your stomach and your heart when you realize that you cannot put eyes on your charge.  Thankfully for most parents, this stage is short lived.  For many families of children with autism,  the stage is ongoing and is a source of constant worry.

The first time Isaac went missing was at a church nursery.  He was three and had just been diagnosed with autism.  We had taken him to the big boy nursery that Sunday as he had outgrown the infant to toddler room. The church was moderate size.  It was too big to know everybody there yet too small to be thought of as a megachurch.  There were two services and it was common for parents to drop their children off and pick them up throughout all of the worship hours.  Sam went to get Isaac.  The  very sweet lady looking after the children assured Sam that "Isaac wasn't here today."  Sam told her that we had dropped him off before service.  A look of shock passed the sweet lady's face when she again stated that she had not seen our son for the entire hour.  The church was very near a road.  If he had gotten out....we did not want to imagine that.  We tried to maintain our senses knowing that if we panicked we would lose more time.  We looked all around and finally found the boy in the baby nursery that had been abandoned as there were no babies during that service to tend.  Isaac had slipped out of his new room as parents were dropping off and picking up their children and had retreated to the dark baby room to play with the toys there.  He had been unattended by all but God for an hour.  The lady felt horrible.  The church felt horrible.  We were relieved as we clutched our little prodigal in our arms.  I wish I could say that was the last time Isaac had wondered off.

Isaac left the house once as I took up one load of dry clothes and put them on my bed and then came back downstairs.  I had been upstairs ten seconds, but the door was open and he was gone.  He left once when we took his younger sibling to use the restroom during toilet training.  He has slipped away to discover the joys of someone's entertainment center as we were trick or treating.  When he learned that everyone has a television and a computer and a kitchen, his array of options exploded and it was nearly impossible to keep him safe inside the house.  We took turns guarding the exits to make sure the boy would not leave.  If we had to use the restroom, we took him with us.  There was no other alternative.  We tag teamed with each other for the opportunity to shower.  He stays up all night so the challenges were ever present.  Finally, our pleas were heard and the state stepped in to offer one time structural assistance.  Most families request ramps so that a loved one in a wheelchair can access the house.  We requested a wooden six foot fence to be installed backwards so that Isaac would not be able to scale the obstacle and resume visiting neighbors and their electronics.  We knew the fence could not deter Isaac's escape...but perhaps it would buy us some time and he wouldn't get as far away.

Every month or two you hear a news story about a person with autism eloping and coming to great harm. Many drown.  Several die of exposure.  These folks leave their homes, schools or care facilities.  Elopement is a pervasive danger within the autism community.  Many with autism (though certainly not all) are affected by this desire to simply walk or run away.  Isaac struggles with intellectual disability and so cannot perceive the myriad of dangers he is exposing himself to when he leaves the safe haven we create around him.  Isaac is instinctually and powerfully drawn to his chief interests...electronics at the moment followed by food.  He, like all of us really, can get bored with what he has.  When that happens, Isaac follows his instincts to procure his desires in other environments.

We ALWAYS have eyes on Isaac.  ALWAYS....at home, in the community, at church, everywhere.  Do you remember that stage in your child's development when they would get into everything and you had to always have eyes on them (between 18 months and three years).  The thing that keeps these small sweethearts alive through that developmental period is that they are short.  They are further hampered by their inability to successfully navigate difficult doorknobs.  Isaac is taller than me now and there is no door that he cannot out maneuver.  We have never left the parenting stage of constant vigilance.  I sit at the computer that I have placed in the kitchen.  From here, I can see every entrance and exit to our house.  Before I take a break to use the restroom, I will call Isaac's sister from her room and have her come down and keep watch.  This is how every day passes with Isaac.  If we don't, we risk Isaac's elopement.  We risk the danger of injury or death.  We even risk the chance that some well meaning person who is ignorant of the situation as a whole may report and accuse us of neglect or endangerment.  So we keep watch and we take turns using the bathroom.

I don't write this to depress you dear friends.  I want to create a window for you to see the joys and sometimes the struggles of the families that are caring for individuals that are severely affected by autism.  There is no understanding without knowledge.  I share knowledge with you so that you may share compassion with those who live this reality.  I share because a lot of people are afraid to.  They are convinced that their struggles are the result of their own poor parenting.  Any family can be affected by autism.  Amazing parents sometimes have a child with autism.  People who are not good parents sometimes get a child with autism.  The numbers are one in sixty-eight.  Boys are more likely to be affected but beyond that autism does not discriminate by socio-economic group, race, educational status, patience levels or ability of parents.  We just get dealt a card.  I'm just giving you a peek at my hand.

Be the Helper

My all time, flat out, absolute hero is Fred Rogers.  His gentle spirit ministered to America's children for four decades.  He taught little ones that they are special just the way they are.  He taught them how to deal with feelings and fears.  He helped the children explore the world.  He payed attention to those who are most overlooked.

Whenever something horrid happens, the Internet and the television pundits ring out with the famous Mr. Roger's quote:  "Look for the helpers."  His mother had comforted him with that bit of advice when he was a young boy and was scared.  Mr. Rogers himself comforted the nation's children in the aftermath of 9/11.  "Look for the helpers."

I love that advice, but would caution all of us grown ups to remember that Mr. Rogers was speaking to children.  We seemed to think he was speaking to us.  Maybe it was our narcissism, maybe it was because Mr. Rogers had ushered us through our own childhoods, but we need to remember that the dear man in the red sweater was not speaking to us in that moment.  Mr. Rogers gave children the very best advice for them. When a child is faced with a situation that they cannot control and that is scary and confusing, they must look around for the helpers.  There are always helpers- people who know how to get things right again, people to tame the monsters and light the dark.  There are always helpers to guide the little ones to safety and to comfort them with their presence.

That advice was aimed at children.

What advice is there for us who reluctantly are cast into the sometimes dark and frightening adult world?

Listen carefully, dear friends....

Be the Helper.

We have grown up.  We traded toys and dolls for freedoms and responsibilities.  Our responsibility is to those little ones that Mr. Rogers left in our care.  They are looking in the midst of the shootings and the hate and the atrocities...they are looking for the helpers.  That's us.  That has to be us.

We are each uniquely gifted to be a helper.  When we were small, Mr. Rogers encouraged us to think about who we were and what our gifts and talents were.  He featured all sorts of grown ups using their unique gifts to help their neighbors, remember?  He encouraged us that when we could, we would find our gift and use it to help our neighbors.  Sweet friends, it happened!  We grew up!  It's time!

What is your gift?  Encouragement, Caring, Helping, Healing, Listening....  You know what your gift is.  It is that thing you do that fills your heart with joy.  It is that thing that comes as naturally as breathing to you, the thing you can't help but do.  How can you use your gift to help your neighbors?  Be careful here.  I don't mean how can you use your talents in an occupation.  Go further.  How can you use your special gift to help minister to the people all around you? If you are a medical provider, that is wonderful!  How can you help heal hurt outside of your practice?   We are all called to be helpers to our neighbors.  You know, of course, that our neighborhood is a bit bigger than the one Mr. Rogers could showcase in miniature houses during his welcome to his television house.  Our neighborhood is immense.  It covers the globe.  Our neighbors are scattered all around the world and while we may be divided by political boundaries, ideologies and language, we are united in our uniqueness and value.  How can you then ,dear friend, be the helper you are called to be?  How can you minister to those around you?

Mr. Rogers was an ordained Presbyterian minister.  He ministered to generations of children who are now adults and who are his legacy.  The man ministered God's love to us for all of those years.  It's time for us to be the helpers we are called to be and minister God's love to those neighbors we see who are hurting...and there are so many of them...  So many are looking around for the helpers.  They are looking for us.  Let's go.

God Made You Special and He Loves You Very Much!

Isaac has loved Veggie Tales since he was six months old.  I actually remember the first time that the boy laid eyes upon the cartoon vegetables.  Sam and I were mall walking with the boy in tow.  We have never been great mall lovers but the mall did provide a respite from the heat of South Carolina with a well laid "path" and convenient places to change a diaper or nurse a baby depending upon the need.  We were killing time and enjoying each other's company.  We were the proverbial happy little family perusing through the shops and had ended up in the children's corner of Family Christian Stores.  Cue the heavenly throng and the spotlight, dear reader.  It was here in the storefront of Family Christian in our local mall that Isaac and Larry the Cucumber and pals first met.  It was Dave and the Giant Pickle.  My child's head swung to the video.  He stopped his baby noises for a moment.  He was in love.

I do believe in love at first sight.  I have seen it.  The love Isaac has for the Veggie Tales is a real and steadfast thing.  I understand child development and do know that he was attracted to the catchy music and to the bright colors (green cucumber/red tomato).  Still, I am grateful that out of all the videos/shows that are out there that Isaac chose Veggie Tales.  Isaac has loved Veggie Tales for the better part of his fifteen years.  Can you imagine putting up with Teletubbies for that long?

During the summer, I end up watching veggies with Isaac.  He watches and rewatches his favorites.  He was overjoyed to find that certain Veggie Tales were now on Amazon Prime!  I sit with my teenage son and watch the antics of vegetables.  They end each show with a basic message: "God Made You Special and He Loves You Very Much!"

Wow!  That is worth repeating.....Dear Reader, Listen and Know....
God Made You Special and He Loves You Very Much!

Let the truth of that sink in.  God crafted Isaac, me and you for a select purpose fit just for us.  One hears of such despair and hurt that manifests in shootings and other violent acts.  So many have lost sight of that one key truth that Isaac quotes on a loop...

God Made You Special and He Loves You Very Much!

That is such a powerful truth.  That statement frees you.  It releases you from the fetters of other people's ideas of what you could or should be or what you could or should be about.  The truth releases you from the futile scurrying of society trying vainly to fit in and be like everyone else.  You cannot be like everyone else. You should not be.  God created you specially and differently.  You are important.  You matter.  You have a purpose.  The world tries to entice us to bury the truth in the business of chasing an artificial reality.  That only leads to dark depressive days.  You will never be good enough to gain the world's love and admiration. Think of our most renowned heroes.  Everyone of them faced a crowd of people shouting snide and hateful remarks.  The greater an impact they had, the more their culture hated them.  You can't please the world...but you don't have to.

God Made You Special and He Loves You Very Much!

Hold tight to that truth.  Draw your strength and motivation there.  Realize your purpose in that statement. The God of the Universe made YOU SPECIAL and LOVES YOU dearly.  How can we despair?  Don't let the world douse the light that God put in you.  Don't let it smoother out your purpose.  When you are tempted to give up dear friends....

Seek the advice of a vegetable and remember....

God Made You Special and He Loves You Very Much!

Obsessions

I had planned on writing a different blog today.  I had planned to write about the experience of watching the rain clouds gather while we watched from a shelter at Lake Warren.  I had planned to write about the beauty of the storm and of its magnificent power.  That was the plan.

The reality is that Isaac is obsessing.  For those who will understand this, Isaac is autism obsessing.  For those blessedly ignorant of my phraseology, imagine the worst toddler obsession you have ever encountered and magnify that behavior to the hundredth power.  I'm being kind.  It's actually more than that.

Isaac has been up and down the stairs wearing a path in the flooring between his room and the kitchen where I sit to write.  He has always been obsessed with Veggie Tales and the computer.  Managing his behavior used to be easier as he was entertained by switching from YouTube clip to YouTube clip featuring a hodgepodge of Veggie Tales, Barney and Disney sing a longs.  As he has aged, Isaac's obsessions have multiplied.  His computer no longer fully satisfies.  He has added a calendar fascination.  I blame the schools.  They concentrate a good bit through the years on the calendar, the specifics of the date (month, day and year) as well as upcoming holidays.  If a child is particularly prone to obsession, this constant curricular reinforcement over the years is akin to perpetuating a drug habit.

Isaac began taking all of the calendars in the house and stashing them in his room.  He writes on all of them and tries to put something on each and every square.  He identifies the most obscure holidays and fixates on them.  Last year, he discovered for the first time that he could ask for presents at Christmas and then get them.  It may sound like a simple concept to you, sweet reader, but to us this was a major cognitive breakthrough.  We celebrated his achievement until after Christmas, when Isaac identified the next holiday out and demanded presents for Martin Luther King Jr.'s birthday.  He then wanted presents for President's Day and for his sister's birthday.  When we successfully held these requests at bay, he found that we did concede and say that we would give presents for Easter.  Every day, all day, every moment, he talked about Easter presents, List, One- Two Presents.  The obsession grew to such a frenzy that the rest of us resorted to drastic measures.  We moved Easter.  By the Saturday before Palm Sunday, the children were in complete agreement.  Make it stop.  Tomorrow can be Easter.  It will be OK.  God will understand.  I wrote a social story for Isaac and we changed Easter.  Thankfully, he bought it and the plan of mobile Easter went off without a hitch.  We breathed in one sweet moment of peace until Isaac looked up at us and said "Mother's Day.  Presents.  List.  One, Two."

I was fed up.  "No Isaac.  All done presents.  Presents for me on Mother's Day.   Mine, Mine, Mine, Mine, Mine!"  It would have been laughable.  The whole situation is until you stand back and think about what that kind of obsession does to the sanity of those who live with the obsessive person.  You do learn to block out a fair amount of Veggie and calendar talk but that becomes more difficult when Isaac comes up to within an inch of your nose and reminds you that it is "Almost Father's Day.  Presents.  One, Two."

"No Isaac.  Presents for Dad on Father's Day."
"List.  One, Two Presents."
"For Dad, Isaac.  Just for Dad."
"Sunday is Father's Day.  Presents.  One, Two.  Just Two.  Just Five."

You ignore the boy.  He comes closer and closer and gets louder and louder repeating and repeating and repeating.

You cannot yell.  You may not scream or reprimand angrily.  If you do, behaviors will escalate quickly and you will have a much bigger mess on your hands.  A redirect with an alternate activity lasts as long as the activity lasts and then the obsession starts again with the same level of incessance and volume.

Popular advice tells us to live day by day.  During these times, day by day is much too long a period to comprehend.  Moment by moment by moment.  That's how you get through.  Manage this moment.  Live through this moment.  Keep it together through this one moment and then the next one and the next.  That's the trick.  Moment by moment until I know that Sam is coming home from work.  Then I can tag off and it can be his turn.

The Lighthouse

I won't lie.  There are so many aspects about autism that stink.  They really really do.  We have had to deal with aggression, self aggression, pica (eating things you shouldn't...read, eating everything you shouldn't), communication deficits and differences, fine motor deficits and differences, sensory differences, smearing (don't ask), etc, etc etc.  Autism can seem like a very dark journey along a hidden path with no map.  To make matters worse, there are sometimes adversaries along the road.  There are those that lay traps and attempt to sabotage the journey so that they may maintain status quo and make sure things are done as they always have been done before.  It does not matter if what they are doing suits the needs of your child.  Their way fits the mold.  Their way is acceptable.  There is no discussion.  You need to be quiet and accept status quo.  There are also those who lay traps because they have been offended.  They have been offended by Isaac and have taken his potential aggression personally.  They have been offended by Sam and me as we have asked them to consider an alternative route to help Isaac along his way.

But there are some people along the journey of autism who hold a lamp.  There are some that tirelessly man the lighthouses that show up periodically along the road.  They are not recognized as anything special.  They come from different backgrounds.  Some are teachers; some are physicians; some are bus drivers, secretaries, friends, church helpers.  They represent every socio-economic group and every ethnicity.  They may be any age.  Those that man the lighthouses are united only in their love for the others who travel this special needs road.  They have noticed the perils and have gone to great lengths to be the one to help.  These friends light the way.  They offer support and love.  They offer service to those with special needs.  They offer light on a dark road.  They offer hope.

There are no special compensations given to these light bearers.  There are no parades or awards.  They serve because they are called to do it.  They give their time and energy because one day they caught sight of the special needs road and they felt the pull to help.  These special people do more than provide us with light so we can more successfully navigate the potholes and dangers around us.  They offer their hands and help us along the way.  They do not pity us.  They respect us and our children. They know we are capable travelers.  Still, everything that can be done by one is more quickly and more capably done by two.  These light givers are here to help.

Today, Isaac got to deliver the very first Lighthouse Awards associated with I Can for Isaac.  We hope that these awards will serve as tangible evidence of appreciation and inspiration to the people who have provided light to us as we have traveled the road of special needs.  We recognize them for their ability and their willingness to serve.  We celebrate their head and their heart.  We hope to recognize others who have helped, who have responded to the journeys of those of us on this special needs path.  We will see how that progresses.  Today, we got to breathe a thank you.  Today, we were given the opportunity to encourage the encouragers.  Today, we got to shine a light for the light bearers.

Summer Plans

Today is a half day.  So is tomorrow.  Friday is the official last day of school.  The kids are excited.  At least, all but my youngest who is saying goodbye to second grade and still enjoys school.  She has been tormenting her siblings telling them that she will miss homework and asking them why they won't.  I watch their mounting excitement and try to figure out my own reaction to the upcoming break.

I will be so very happy to have my kiddos home.  They are exceptional young people and really cool kids.  I actually do miss them during the day so the prospect of spending my days with these small humans is exhilarating.  They are some of my very favorite people on the planet.

I watch Isaac as the end of school draws near.  I wonder how the summer will be for us.  He is a goof nut (that is a mommy term of endearment, folks) and I do enjoy his shenanigans.  I watch him smile and giggle as I hope and pray for a good break.

We have had difficult summers.  There have been breaks where I have spent the entire three months standing in front of my kitchen sink.  Literally.  One can see all the exits to the house from the vantage point of the kitchen sink.  I have spent many days and many months leaned up on the cabinets in front of the sink watching to see if Isaac is going to try to leave the house.  When the boy descended the stairs, I was there ready to redirect and supply an alternate activity that would keep him inside and under my care.

There were summers when his behaviors were out of control.  Thank God, I don't think this will be one of those.  There were summers when Isaac was angry.  He spent his days hitting himself and lashing out against others near him.  I spent those summers praying that all would be well.  Whereas a school has a collection of professionals within the scope of their radio, I have only myself to rely upon.  I am glad to report that Isaac and I got through those rough summers.  He was as happy as he could have been and everyone stayed ok.  Isaac and his siblings and I...we got through.

There were summers when we spent the entire holiday in the house.  Particularly when my youngest was small, it was impossible to plan for the myriad of potential scenarios that one may encounter by taking them all out by myself.  Those days are mostly past.  I can reasonably count of Isaac's siblings to obey me the first time.  They know what I am managing.  They know the importance of their own behavior.  Still, outside events like Bible School would take so much planning that I will probably decide against them.  Every excursion's success always gets down to the question of how can we do this with Isaac.

It is difficult to plan play dates for the other children too.  Their friends and their families must be vetted first.  Before any child comes over, I call the parent.  I tell them about Isaac's autism.  I try to keep my voice light and blithe as I discuss the fact that while Isaac usually prefers to keep himself entertained with his computer in his room, that their child will see some potentially different  behaviors and that these behaviors may be frightening.  I ask the parent to talk to their child beforehand about Isaac's happy behaviors of jumping and shouting at his computer as he replays a Veggie Tale line over and over.  I tell the parent that there is the potential that Isaac will be up singing loudly to himself all night.  I suggest a day visit before the child will spend the night.  If the parent agrees to allow their child to come over, I spend the day watchful of Isaac's behavior so that I can interpret it and soothe our newly arrived visitor so they may want to come back again.  Sometimes, the thought of the process is too grueling and I attempt to steer my children away from asking for play dates or slumber parties.

I want it to be a good summer.  I want so badly to spend family time with the children and to learn more of who and what they are.  I want us to enjoy some of these fleeting moments together before adulthood pulls them off into their own whirlwind worlds.  I tell myself that it will be a good summer.  Isaac is at a really good place this year.  His therapists are pleased with his progress and he has had a great semester at school.  His baby sister is 8 this year.  Maybe this summer everyone is old enough to support some summer outings.  I want to try.  As difficult as it may be, I want to try.  I have connected with so many wonderful people through this blog and Isaac's Face Book page.  People are beginning to understand.  Maybe they will be ok sharing some days with us without being frightened off.  I want to try.  I want to think that this will be an amazing summer.

A Tantrum Before Bed...

Isaac did not care that yesterday was his parents' anniversary.  He did certainly enjoy the spoils.  We celebrated, as is our tradition, with a cookie cake which is reminiscent of the one we used as a groom's cake at our wedding.  Isaac was most impressed with that.  He was also impressed at the homemade pizza which we made to remind us of how right after the wedding Sam and I , famished, (who gets to actually eat at their own wedding?) stopped by Pizza Hut and paid with the cash out of our wedding envelopes.  But beyond the food, the day itself had no real meaning for our son.

I didn't expect the day to have any real significance for him... but I could have done without the tantrum.  In Isaac's defense, the day seemed out of order.  Sam had taken the day off work so he could spend the day with me.  Isaac did not expect to see Sam pick him up off the bus and certainly did not expect to eat as early as we did.  The days at school seem different as the students prepare for summer break and now the day at home was different too.  Isaac usually excels at transition...but yesterday, he didn't.

It was time for bed.  I told Isaac to shut down his computer and use the restroom.  He glared at me and left his computer.  The boy stomped toward the bathroom.  He sat down and folded himself in half over the toilet.  He does that and usually it means he will have a bowel movement...but sometimes he can fall asleep that way.  I gave him some time but realized there was no evidence of action.  "Isaac, use the bathroom!  Come on, its time for bed!"  I admit that I raised my voice.  I was frustrated.  I had been coaxing Isaac's younger siblings to clear a trail between their individual doorways and their beds to maintain fire code compliance.  Isaac was already huffy and now caught my mood too.

I will always hate his yell of frustration.  Tonight, he sat on the toilet red faced, screaming, yelling and hitting himself about the head with a closed fist.  "Sad!" he screamed.  "Upset!"

Immediately, I turned away from messy room patrol.  My mood went further south.  We had been here before.  Isaac has struggled with aggression and self aggression.  "Really," I thought, "not tonight...please"  Outwardly, I maintained composure.  I shut the children's doors.  "What do you want Isaac?" I sighed.  I was more tired than anything else.  Emotional fatigue seized.  We have danced through this scene so many times before.  Isaac, still on the toilet, stopped beating his head and turned toward the mirror.  He took himself in with his red face and teary eyes.  He pointed to himself and let the image rev up his emotions further, "I want sad!  I want upset!"  He began to beat himself again.

"All done fit."  I am nothing if not matter of fact.  "I need you to finish using the bathroom.  It's time for bed."  My words were received with more yelling and hitting.  He kept looking at himself and revving his emotions up to a more and more excited state.  I kept a blank expression.  One cannot respond with any expression or it feeds the behavior.  I don't know if its worse that I know that or worse that I can watch my son beat himself and maintain an expressionless gaze.  "All done, Isaac.  Time for bed."

Isaac had now reached that place in his behavioral pyramid that demanded he strike out.  I was there.  Isaac's aggression is never personal.  He just uses it as communication.  I know when to back away but today he was quicker than I expected.  He caught my wrist.  He grabbed it and squeezed hard.  I tried to turn out of the grab but he is getting stronger.  His nails dug into my skin.  "Snot," I thought "he broke skin".  I am ok at the sight of blood but I hated that he broke skin.  The fact that he changed the skin and produced blood on it would be reinforcing to the behavior as a whole.  I tried again and this time twisted out of his grip.  I maintained an expressionless gaze and a flat affect  "No thank you." I repeated.  "What do you want?  Use words."

"Upset!" He screamed!  " I want sad!"  He kept stealing glances at that stupid mirror.  I made a mental note to move that thing out of the bathroom.

"I need for you to go to bed."  I responded.  "Put on your pajamas"  The doors of Isaac's siblings were still closed.  This is certainly not the first scene they have witnessed.  My youngest used to say that Mommy was "brave like Mulan" because Isaac's tantrums did not appear to phase me.  Isaac finally complied and laid down in bed after a few more grabs at me.  He went for my chest once but I managed to back out of that one.  He did get my wrist again.  Each time he made contact, I realized a bit more fully how much bigger and stronger he is getting.  I wonder sometimes when he will really hurt me.  He knocked me off balance a couple of times but I was still able to maintain composure.

He was still screaming when I left him to go to sleep.  I couldn't figure out what he wanted exactly.  He never would use his words other than to confirm that he was upset.  I did not dare go to him to comfort him as I had already been at the wrong end of his behavior.

It was as calm as it would get.  I read a story to my eight year old and kissed my ten year old.  I checked in on my thirteen year old.  I felt like a horrid mother for not passing the threshold of Isaac's room but I did not want to make things worse as it seemed like he might be calming.

I came downstairs.  The gentle mood of our anniversary had evaporated.  Worry set in as I imagined fifty different futures that were bleak and dim.  It's times like these that reality shows it face...and away from the children....I allow myself to shudder.  He's getting bigger.  How much longer can we do this?  It's not personal and I know that.  Isaac is frustrated and is trying to communicate that he is not happy.  But how does this play out?  I can't go there because there are no good answers.  I comfort myself in my husband's arms.  We watch Netflix and sip coffee.  We choose not to think about the future too much.

This morning, Isaac got up and was tired but ok.  The events of last night were gone from his thoughts.  He does not hold a grudge.  He lives in the now.  It was a usual morning of dressing, breakfast and bus.  He's off to school and I sit here at the kitchen table pouring myself out in this blog.  I do think about the future.  I pray.  I hope that all will be well...and then...I push it to the back of my mind...until I have to face it again.

What Can You Not Do This Summer?

It's a goal anyway.  A few weeks ago, I was at my wit's end trying to balance meetings, people and obligations.  I noticed how very very noisy and insistent everything seems to be.  I'm not talking about the kiddos - that's a different kind of noise and need.  It was the world that seemed to be encroaching.
The bird song outside my window was being interrupted by the ringing of the phone.  The noises from the pond were being overtaken by the roar of the television.  Enough.  I am tired of the noise.  I am tired also of the heartache.  I go to the news sites and am bombarded by the accounts of shootings and stabbings and hatred.  Enough.  My soul is tired.

I made a decision.  I am consciously stepping back from the typical this summer.  I am set to have four days a week that I can concentrate on my little ones and on my husband.  I have taken a break from school and have a limited work schedule.  I am set to give my time to encouraging others through this blog, Isaac's page and anywhere else I have the opportunity.  I resolve to pay little attention to the news of hate.  I would much rather propagate love and hope.  I want to use these next months to celebrate simplicity.  We will continue to explore the parks and let nature use her balm to heal our maligned ears.  She can soothe us with the sounds of waterfalls, of leaves blowing in the winds and of bird song.

We won't sign up for many groups or camps but will get together to fellowship with friends.  We will step back and center.

Next year, two of my four children will be in high school.  If we don't take a moment to breathe amidst the rush of time, it will be too late and these opportunities will be lost.  No thanks.  The time is now.  I know so many are planning their summers and there are things that need to be done.  Still, I challenge you.  What can you not do this summer?  Schedule a break and learn again to listen, to hope and to love.  Moments pass and we cannot reclaim them.  Who will join me for a slow and simple summer?

Isaac's Sister

From the very first, people questioned us about choosing to have our children close together.  Our sanity, ethics and morals were further questioned when we had children after Isaac's official autism diagnosis.

This morning, Sam and I went to my daughter's middle school awards day ceremony.  We squeaked in just as the program was beginning.  We had had to negotiate a long line of vehicles carrying other proud parents.  Our state park hiking and navigating skills had paid off as we finally found a place to park at the community center adjacent to the school and had negotiated the trails across the creek, past the ball field and beside the elementary school to reach our destination.  Next time a great crowd is expected, I will wear my hiking boots as a necessary accessory.  We arrived thankful and a bit sweaty and found a seat on the bleachers.  The floor of the gym was populated by the massive eighth grade class all squirming in their seats quite unaccustomed to dressing up.  Parents and siblings lined the bleachers and the teachers and administration were on stage beaming at their pleasant duty of recognizing these students whom they loved.

The pledge was said.  The national anthem was sung beautifully by one of the students and then the presentations began.  We had been notified that our daughter was to receive an award but beyond that we knew nothing.  Related arts instructors presented their tributes first.  Band, Strings, Chorus...

Our daughter's name was called.  She had been recognized as the Chorus Student of the Year.  I listened to her name echo in the middle school gym.  I watched my child confidently approach the stage and retrieve her award.  I beamed.  Sam took pictures.  The room cheered for my child.  More and more awards and recognitions were distributed.  Now all the academic regalia had found their honorable owners.  There were a few more acknowledgements to be made.  I again heard my daughter's name called to receive an award.  She had joined an elite group of peers who had been determined by the faculty to be honored with the Citizenship Award.  She, with her presence and spirit and attitude, had made the middle school a better place overall.  She had affected the school.  She had mattered.  I am so very proud.

I remember years ago watching my daughter crawl through our carpeted hallway chasing after Isaac.  Isaac would sit in front of the air return and strum it ceaselessly to feel the vibration and to hear the noise.  I remember watching my daughter as she strummed it once and then crawled on.  I remember all the times she sought her brother out to interact and play.  I remember how even as a very small child she looked out for him.  I look back on my daughter's early childhood and think of all the ways she has had to grow up ...maybe sometimes too quickly.  I wonder sometimes what the overall effect has been.  I have long tried to comfort myself with the knowledge that everyone has something not quite typical that they deal with.  Our family is very aware of autism.  Other lives have been touched with other challenges both physical and emotional.

I watched this confident young lady walk to the stage this morning and my worry is gone.  I see from the bleachers.  She is strong.  She is beautiful.  She is smart.  She is respectful of all types of people.  She is a good human with a kind heart.  She is my daughter and I am so very  proud of who she is and what she is becoming.

What We're About Now...

The time has come to do a redefinition of terms.  I started this blog and the Facebook page in March as a preparation for April as Autism Awareness Month.  I started the projects more for myself than for anyone else.  It's tough to be Isaac's Mama.  It's hard to deal with the educational, economical, behavioral, psychological, hold it together,  juggling aspects of caring for Isaac.  It's hard and it's ceaseless.  Isaac needs total care everyday.  OK...Stop and go back to that last sentence.  Read it again. Let those words sink in.  Isaac needs total care everyday.  Think about what those words mean. Being Isaac's mama is a whole new kind of hard.  I started this blog and the Facebook page as a way to process and a way to cope.  I had no thought that anyone would actually read my musings, let alone seek my words as the days and posts accumulated.

The project was a call to refocus.  I needed to refocus as well as anyone else.  It is so easy to watch the list of weaknesses pile together into an ever darkening mountain of inability.  It is so easy to let the shadow of that mountain squash the joy out of your soul.  I felt that weight and knew that I had to refocus on to the abilities.  There had to be some abilities.  I had to find them and I had to focus there.
The project was born.  The Facebook, the blog, the call of  "I Can For Isaac".  I would find those things Isaac could do and celebrate them.  I could not alter reality, but I could change my perspective regarding it.  I watched; I took pictures; I wrote; I noticed; I documented; I refocused.  More and more people came to like Isaac's page and like his pictures and posts of encouragement.  More and more people found inspiration in Isaac's persistence and in his innocence.  Isaac's gift of encouragement was validated.  Isaac's ability to inspire other's with love was received with joy.

The response to Isaac's page and blog surprised me, but I guess it makes sense.  This world makes sport of throwing up the unsuccessful and publicly jeering.  Our souls long for innocence, love and encouragement.  That is a huge part of the gifts and talents God gave to Isaac.  Isaac can disarm with his need and his innocence.  He can use his gifts to remind you of yours.  He can do a lot, but he needs a lot of help too.  Isaac's gift is that in his presence we remember that we are like him.  We put on a better show of invincibility, but we need help and love too.  We need someone to believe in us.  We need someone to focus on our gifts and not on our failures.

When the blog and Facebook page were born, I challenged you to come up with something you could do to make a positive change in yourself.  Isaac works hard, you can too.  That was the basic premise in March and April.

It is almost June and the project has grown into another thing.  The central aspects of your personhood will never be changed by outward declaration.  There is a pretense in the shout of "I WILL BE KIND!"  "I WILL BE COMPASSIONATE!"  "I WILL LOVE!"  You could climb the highest peak and shout those affirmations, but I wouldn't believe them.  No one would.  Kindness and Compassion and Love are born quietly in your heart and in your head.  You open yourself to those beyond yourself.  It is not an obnoxious ear splitting declaration.  The lovely intangibles of Kindness and Compassion and Love are born quietly and are continually nurtured by the choices you make as you encounter opportunities given to you.

I Can For Isaac is a place that will nurture and encourage that piece of you that chooses the lovely intangibles.  I Can For Isaac.  Because you know Isaac, you know that everyone has value.  Because you know Isaac, you know that every person has success and is capable.  Because you know Isaac, you know that everyone has struggles and everybody hurts sometimes.  Because you know Isaac, you recognize the importance of kindness and of love and of compassion and of courage.  Because you know my son, you can be inspired to be better.  You can call yourself to be better.  You can call on yourself to matter in ways that matter.  You can nurture love in yourself and in those around you.  You can see them as the gifts God designed them to be.

It has changed, but it is still the same.  I Can For Isaac.  I Can ..... Be Better, Love Harder, See More Fully.  I Can ... for Isaac.

Thank You For Being A Friend...

OK...stop singing the Golden Girls theme song to yourself.  Though it is a good song...just a bit overused.

In the midst of the blogs and the videos and the posts, I wanted to take a minute and say "Thank You."

Thank you for giving a few moments of your day to check in on Isaac.  There are so many demands on your energy and your time.  The fact that you make a moment to check in and see what Isaac is doing is always amazing to me.  I know what its like.  People are clamoring for every spare second and you choose to give freely to Isaac of your time.  You read the posts and this blog.  You like and comment on his pictures and videos.  You keep up.  You insert yourself into Isaac's life.  Lord knows you are not getting paid and you have to put other things on hold for a moment in order to make time for Isaac.  Still, you give freely of that most precious commodity of time.  Thank you dear friends.

Thank you for giving me your ear.  I skimmed a news article yesterday that bemoaned our ever lessening attention span.  The article proclaimed that if something can't be said in two seconds, it will be ignored.  Dear friends, I am often prolific and every once in a while profound.  I am not an easy read.  I do try in these writings to give you an honest look into our lives and our journey along this complicated trail of special needs.  Our walk with Isaac is complex.  The road changes terrain with every step.  It is impossible to give you an honest account that is brief and simple.  Life with Isaac doesn't work that way.  We love you enough, dear reader- we value you enough- to gift you with our honest selves- that takes a bunch of words and it takes an attentive ear.  You give yourself freely to these writings.  You read them and you think about them.  You absorb my words and with those words you take in a little bit of our lives.  You share the trail and while you are reading, you journey with us.  Thank you sweet friends.

Thank you especially for giving us your heart.  I am continually astounded by the number of page views that this blog consistently receives.  I am floored by the number of likes Isaac has on his page and am humbled at the daily level of activity that occurs among the posts and pictures.  You have chosen to love Isaac.  You have chosen to bring him into your heart and to allow him to change your vision, your expectations, and your perceptions.  You have allowed my son to inspire you to try harder, to listen and understand others more fully and to love more deeply.  You have allowed yourselves to redefine Isaac and others with different needs.  Isaac is not incapable to you.  He is a fine example of God's craftsmanship put here for a grand purpose.  He is not a person for whom you feel pity but is instead an example of strength and perseverance.  You have put on new eyes that see the weakest as the strongest. You have opened your hearts to celebrate the victories of friends of all abilities.  You have fallen in love with my son.  Thank you, thank you, thank you dear sweet friends.  

Isaac's Love

There are many things about autism that are indescribably horrid.  My years as Isaac's mom have included days of frustration and tears.  I have dealt with irrational people and impossible situations and have wondered how I would ever ever survive.  There have been lots of hard days.

But some days are wonderful.  Some days, Isaac's autism is more of a gift than an obstacle.  Today has been a peaceful day.

Isaac has a cold.  He is tired and snotty, but other than that he feels ok.  Thinking that the boy needed some rest and that his teacher does not need to chase his nose with a tissue all day, I kept him home.

I gave the day to my son.  Isaac directed our course.  He has guided me through a slow gentle day. He sat on the couch and watched his favorite cartoons.  Isaac has loved Veggie Tales since he was six months old.  Sam and I are incredibly lucky that Isaac chose Veggies to perseverate on.  They are well written and funny.  The writers are talented and (God love them) they even put a few punchlines in their work that only the parents will understand and enjoy.  So we watched the screen together as vegetables reenacted Bible stories and morality tales.  Isaac was all smiles.  He looked at me and commanded "Sing" when the vegetables broke out into songs.  I take this as a compliment worthy of an invitation to sing at the Kennedy Center.  Isaac does not and cannot lie.  If he wants me to sing with his Veggie Tales, then I must be pretty good!  He does not ask just anyone.  I wear the call to sing with the Veggie Tales as a badge of honor.  Of course, I obeyed.

We sat.  We watched.  Isaac rocked.  I sang on command.  Isaac let me sit close and give him a kiss.  At one point he put his head on my shoulder and fell asleep.  Isaac only dozed for a moment and then was again awake and rocking in time to the singing, dancing produce on screen.  Still for a moment, Isaac choose me.  He put his trust in me to comfort him when he didn't feel well.  That is an honor I cannot describe.

Autism is a different kind of thing.  Isaac has never given me love because I am his mother.  As hard as it might be to read, I have long understood that my value to my son is in the care I give him.  Autism does not ascribe feeling to role.  His love is different.  It is a rare thing that Isaac would seek out a moment of comfort from me as his mom.  But today, he did.  I held Isaac.  I held him and remembered those days years ago when I held him and sang him to sleep for an afternoon nap.  I remembered kissing his forehead when he was a baby, and today I again allowed myself that privilege.  There have been excruciating days.  Today though is not one of those.  It is gentle.  I will enjoy the peace.    

Life with Isaac: Sleep

Caveat:  I am writing today on about three to four hours of sleep.  This post may not be eloquent but it will be honest.  I pray it won't get me into too much trouble.

I do believe my boy is fundamentally opposed to sleep.  The difficult thing is that I'm not.

Isaac has struggled with sleep issues since he was a baby.  I remember being in my third trimester with Isaac's younger sister, cradling Isaac around my protruding stomach and praying he would sleep so I could.  He would move his arms.  I would reposition him.  He would kick his legs.  I would reposition him.  I thought he was quiet and he began to fidget with his toes.  It became apparent that there are some things that a parent cannot make a child do.  Let me assure you:  You cannot make a child sleep.
Those early days were easy though.  Later on, we would wake in the night/early morning/who knows anymore to the blaring of "I Can Be Your Friend" (a Veggie Tale song that is usually sweet and welcoming but whose warm notes are not particularly edifying before four o clock a.m.) and Isaac jumping up and down in front of the television.  We got up and put him back to bed.  Ten minutes later and the television was blaring again.  And on and on and on.

Autism is a neurological disorder.  Isaac's brain is inherently different in ways that modern science does not understand.  I am completely convinced that he does need as much sleep as a typical person.  The difficulty is that...Sam and I do need a little sleep from time to time.

Having children is stressful.  Having a child with special needs is exceptionally stressful.  You have to be prepared for one of fifty scenarios with twelve solutions and three back up plans in two seconds flat.  You must reasonably deal with your child with special needs, your typical child, your spouse, your coworkers and any of a plethora of medical, educational or bureaucratic representatives as they present their issues.  You must be an expert on medication, behavior, therapeutic intervention, educational policy and law and the state hierarchy of services on two to three hours sleep.  You must always present as a professional or you will be brushed away as an idiot and your child will not get the attention or service that he requires.  This is a minimal standard.

Do you remember dragging yourself through those first few months of infant waking?  Do you remember you dependence on coffee and the bags under your eyes?  Do you remember waking from your first full night sleep that your baby allowed you?  Remember that and multiply it by fifteen years.  That's what we are dealing with.

I'm not writing this to complain.  Everybody has something and I understand that.  I'm writing to educate....to let you know what its like.  I'm writing to give you a feel for the level of exhaustion so that when you see a parent of a child with special needs you will better understand and will give us grace if we ask you to repeat something, if we trail off mid sentence, if we lose focus, if our eyes or our tone of voice reflect our frustration, if we shed tired and frustrated tears, if we look like we have been up all night.  Give us the gift of grace.  Dear ones, you cannot imagine what it is to be awake for three nights straight as your ceiling shakes under a teenager jumping all hours in excitement of an upcoming holiday.  It is unnerving to wake to Isaac at two o clock in the morning standing over you centimeters from your face greeting you in a loud but low voice, "Good morning."

The sleep deprivation thing is not fun.  It is one of the most difficult things about having a child with special needs.  It makes daily life difficult.  Don't some use sleep deprivation as a method of torture?  It makes travel almost impossible.  We have to block all exits with a suitcase which he will hopefully trip over so that we may wake up and prevent him from leaving the hotel room.  We have been know to sleep in shifts which only half works.  The trek home takes Olympian effort.  Imagine staying up all night for days on end and then having to drive back home.  Coffee is indeed a great friend.

Thank you for reading...for taking a moment to see...for extending grace....for loving us....

Excuse me friends while I go try for a nap...

Change

Bear with me friends.  My computer is being wonky so I'm writing on a tablet.  That's not such a big deal if you are under 30 but I am almost 41 and from the only quasi computer generation.

The thing I am thinking most about today is change.  Recently, I got word that my alma mater is closing its doors after 130 years of existence.  Virginia Intermont College was a small private college and I was fortunate enough to get there via scholarship.  I graduated in 1995 and it has been a while since I last visited.  It makes sense on paper.  Times at hard for small private schools.  They could not keep enrollment up.  My mind justifies the facts of change, but my heart grieves.  I met Sam there.  Geeks that we were, we met in the library.  We courted there.  We announced our engagement there.  We are each other's best college souvenir.

Last year, another old haunt slipped away.  I spent many summers working as a camp counselor at Buffalo Mountain Camp.  I worked with so many little ones, grew so much myself and discovered God alive and well in the tranquility of the mountain.  I left the mountain confident of its endurance.  And then there was an enormous mudslide and the camp was no longer able to function.  My mind understands the concept of natural phenomenon, but my heart grieves.

I know it is ok to mourn change but I also know the perils of staying put.  Isaac's cognitive differences have kept us in the world of Veggie Tales and Barney well into his 15th year.  The absence of change brings a stale stagnant reality.  In many ways, we are stuck while everyone else travels on around us.

I remember when each of Isaac's siblings passed him up developmentally.  I was of course thrilled that they were developing typically and growing like they should.  And yet, I mourned.  I told myself that I. Pruned for Isaac but in reality I simply mourned for myself.  Isaac has little social awareness, a rare advantage of severe autism.  He was, is and always will be fine with himself.  I mourned that I would not get to experience the usual adventures and changes of life with him.  My head knows that we have had different adventures and still will.  Yet,  my heart sometimes mourns.

I love you sweet friends...

Ironies

Autism is the gateway into the world beyond the looking glass.  It is a place where rules apply but not the logical ones we are used to obeying.  I sometimes feel like Alice being led along by the likes of Tweedle Dee and Tweedle Dum through this wild new world desperately trying to keep up and to comprehend their strange take on the manners and logic of this realm.  The world of autism is frightening and it is dreadfully difficult to find one's footing.  It can also be pretty cool.  Autism is an irony.

I have met the best people along a path I never wanted to explore.  My fellow travelers who have children with special needs are devoid of pretenses.  They are honest.  They are relevant.  They are real.  They are the strongest and most persistent people I know.  They are also the most humble and the most aware of their own weaknesses.  They are the people that have the most reason to scream yet seem to be the people who are most able to come up with logical clear arguments as to why a thing needs to be done a certain way for their child.  The other parents along the road have the most reason to weep yet travel amid laughter.  They have learned that a sense of humor is as essential as a walking stick along this journey.

I have learned to call attention to things society tells me are of little to no importance.  In this upside down world, it is the small things that are of the mean the most.  I clap when I see a baby point!  I jump up and down in delight when I hear two and three word phrases!  I have been known to stop shoppers in the aisle and compliment their little one on a great job using their words.  I have learned the value of encouragement and love, things that society rates as substandard to prosperity and power.  I have learned the value of stillness in a very loud world and yet I have rejoiced when my child uttered the word "No" instead of displaying his disapproval via aggressive behavior.

I have redefined vague phrases like low and high functioning.  I have a different standard of what is important and what I most value for my child's education.  Functionality has for the most part trumped academia.  For every skill taught, I need to know how it will help my child progress in the real world. Success, progress, regress, independent, functional...these words been whittled away to their barest meaning.  My standard has become basic and yet it is grueling.  Isaac does not have time for educators to play.  A skill must be proven useful to Isaac's reality in order to merit the award of functionality and the time to address it.  I care less about high level math and much more about the social skill of waiting in line.

Ironies continue.  I will share more as the blog progresses and my imagined comfort level with you, dear reader, grows.  I will be honest.  Ironically, you must decide if you really want me to be.

I Hate Regression!

If ever there was a word to detest, it is "regression".

I remember teaching Isaac to use a spoon.  I had waited for him to catch on and to emulate what Sam and I were doing with a utensil as we ate.  We had no idea about autism at the time but we were fast becoming aware that Isaac had absolutely no interest in what we were doing (eating) or how we were accomplishing the feat (using a spoon).  Instinctively, I understood that if ever Isaac was going to learn to use a spoon that I must teach him.  I was doing behavioral therapy without knowing it by first giving him hand over hand prompts to negotiate his spoon to his bowl, to scoop the semi solid spinach into it, and to transport the food into his mouth with minimal (for us) spillage.  I then moved back to holding just his wrist, then his elbow and then just pointing and reminding.  It took two months and a lot of work but finally Isaac had mastered eating with a spoon.

Finally, he had mastered this skill!  Finally, he had conquered his hurdle.  Isaac had done it!  He did it!  We did it!

And then....

One morning, I put Isaac's breakfast before him and my child looked at his spoon like it was an alien thing.  Not giving it more than a cursory glance, he began to grab at his baby oatmeal and fist it into his mouth.  I stared at my little one in shock as I watched him smear the food all over his face and hands.  Some who read this may think I was overreacting.  Babies will play.  I know...but this was different.  I saw his eyes.  He had forgotten.  All those hours of working with the child....all the practice....all the progress....gone...just gone....into a moment of regression.

Regression is a dirty word.  Humans were not meant for it.  We were meant to progress to new things and to continually look for new adventures to conquer.  And yet, here we were, my son and me.  He had certainly regressed.  He had forgotten, and we must step back if we were to reattain the skill of eating with a spoon.  We have children with the anticipation of walking forward with them as they explore new challenges.  I cannot explain to you how difficult it is to take that small hand and with your child step back.  I could not ignore Isaac's direction.  We stepped back and went to work again.  Again we worked hand over hand, again we faded the prompts, again we worked for weeks and again he achieved the skill.

I was thrilled but wary...I was beginning to  understand that something more serious might be involved with Isaac's forgetfulness.  I was frustrated that this had taken so very long.  I blamed what must have been poor parenting.  Other babies did not necessitate this much extra time and practice to learn simple skills.  I was confused at how a child could just forget a basic skill.  Down at my base, I was fearful of the shadow I saw in the distance telling me that something was different about my child.

Isaac isn't the only one who regresses.  We all do.  We find ourselves staring at the same doughnut or the same glass or the same picture over and over again.  We know better...but we forget.  We find ourselves in the same relationship making the same choices all leading to the same outcome.  We know better.  We have been here before and progressed beyond our struggle....and yet.  We regress.  The only difference between Isaac's regression and our own is the type of information we have forgotten.  We are actually more culpable for our regression than Isaac will ever be of his.  Isaac's autism steals his skills.  We know and choose to regress.  I think that makes his regression much less severe since there is no cognitive intent.

We can learn from Isaac.  There is only one way back from regression.  We must progress.  We must honestly look around and comprehend our position.  We must choose.  We must take a step and another and another.  We must choose to progress.

Where are you sweet one?  I have been regressive of late.  It's time to look around and see where you want to live.  I am taking a step forward today.  I choose to progress.  It's difficult, but worth it.  Isaac can do this.  We can do this.  We can progress ....for Isaac.

Confessions

It is not quite 8 am on Tuesday.  The children are on their buses headed to school.  The house that is usually full of squeals and laughter and stomping is now quiet but for the loud tick of the Mickey Mouse clock keeping the time.  I am at the keyboard writing to you and to myself.

I am procrastinating.  The reality of the day is trying its best to get my attention and I am doing my dead level best to avoid it.  I have been doing a lot of that lately.  I have gotten good at procrastinating and avoiding.  I am behind in my school work.  There is a paper I should have finished but instead I am typing this blog amidst a table littered with unorganized paper and notes encircling my workspace like the walls of a crazy cozy igloo.  There are calls I should have made but haven't.  There are chores to be done that have not been carried through.  I have lost track of the last time I worked out.

So now you understand.  I am not perfect by a long stretch.  I am not a martyr or a saint.  I am a perfectly ordinary person who is perfectly capable of becoming perfectly paralyzed by the realities around me.  I struggle and fail in so many areas.  I could ponder my imperfections.  Heck, I could have help with that.  There are many out there who would relish in telling me how very imperfect I am.  I could walk through my house and note all that needs to be done.  I could stare at the computer screen with unfinished school work.  I could stand on the scale and lament the pounds that have eeked their way back to me.  I could wallow.  Wallowing would be easy and safe and in a strange way... comforting.

But I think of the fact that I am posting on Isaac's blog.  I can for Isaac.  I think of the countless hours and weeks he has spent learning the basic bits of every skill he has ever attained.  I think of the times he has succeeded and of the times he has forgotten and given back ground he has gained.  There is nothing so frustrating as watching your child try in vain to remember a skill that was once mastered and is now lost to the cognitive deficits of disability.

When Isaac loses a skill, we double up and reteach it.  We sometimes have to start back from the beginning.  Sometimes we have to go before the beginning and reteach the introductory skills relevant to the skill he has lost.  When Isaac is stuck, we work to free him.  That boy is full of lessons.  I feel stuck.  I must work to free myself.  The chores will not be accomplished by birds and squirrels circa Snow White; the paper will not fly together of its own accord; the pounds will not disappear on their own.  I am stuck.  I must choose to move and I must work to make progress.

When Isaac was born, I refused an epidural.  Though I hate needles, my primary objection had less to do with the needle and more to do with the fact that I wanted to fully walk through the journey of birth with my son.  It was a beginning way for me to experience life with him and not ask him to do anything I was not willing to do myself.  Isaac is 15.  He struggles to learn and then relearn and then relearn again.  I find myself again holding his hand as I do the same thing.

Its good to confess imperfections.  Its good to show your underbelly.  We expose our humanity.  We share our journey.  We pull each other along and we share our achievements.  We get an opportunity to love.  With love and thoughts of my son and of you dear friends, I am off to face my dragons, do some chores and write a paper.

"So...be your name Buxbaum or Bixby or Bray or Mordecai Ali Van Allen O'Shea, you're off to Great Places!  Today is your day!  Your mountain is waiting.  So...get on your way!"  Oh, the Places You'll Go  Dr. Seuss

Why I Celebrate "Incapable"

Don't you remember that moment when you first held your child in your arms?  You cradle this new tiny treasure gently and hold him close to your cheek.  You laugh and cry at those precious newborn noises and something magical happens as he first reaches up to grasp your finger.  You imagine...you wonder how this young one will change the world.  In our naive way, we parents automatically wonder if this new human will make his mark in medicine or science or politics or entertainment or sport.

You look at that tiny person and love him completely.  You feel so privileged to share his journey.

Isaac is 15 and he is changing the world...but not in any way I could have ever allowed myself to imagine.  The journey that Isaac has led us on is completely different than any I was prepared for.  To many, Isaac would be judged as incapable.  His cognitive and developmental difficulties make aspirations of college or culturally approved career unlikely.  That is our reality.  I used to rally against any idea that Isaac was incapable of anything.  It insulted my heart that my son would be found lacking ability.

And then I started thinking....Isaac is incapable.

Isaac is incapable of prejudice.  He is not racist or classist or sexist.  He has no bias towards anyone but judges everyone who crosses his path on their own merits.

Isaac is incapable of hate.  It is a foreign concept to him.  He may not like the situation he is in...but nothing for Isaac is ever personal or vengeful.

Isaac is incapable of deceit.  He is 100% true to who he is all the time.  He never hides his emotions. You always know where you stand and how he feels about you.  A cloud descends when he is upset and his face fills with joy when he is happy.  His smile widens, he jumps excitedly and laughs loudly.

Isaac is incapable of self-pity.  He likes himself...a lot.  He knows what he likes and he enjoys doing it. Isaac knows who he likes and he enjoys surrounding himself with those people.  Isaac understands himself completely and thinks it odd that we don't.

In many ways, Isaac looks at us and thinks we're weird.  I think he's right.

So yeah, Isaac is incapable of so much.  I think of myself holding that new little one 15 years ago.  I remember my dreams of his occupation and relationships...and I think of what I got instead.

I have a son who judges every person as a unique individual, a child who is devoid of hate and deceit, a son who knows himself fully and celebrates who he is.

I got Isaac.  I got so much more than I could have ever dreamed.  I've got a lot to learn from my guy.

Let's rejoice in the personhood of those we love with autism.  Celebrate "incapable".