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.

One Last Look Back...I Love Second Grade!

I got to visit my youngest daughter's class!  Her amazing and creative teacher who understood the importance of teaching both academics and real world skills asked me to come and talk to her class about special needs.  Actually, she wanted Isaac, but he was in school so I was a decent second choice.

I was thrilled!  My background is in education and honestly I do so much better with children than I do with grown ups!  Children are honest and free and fun....adults....well, not so much...

The class gathered on the carpet and I got to say hi.  I got to tell them that everybody has special needs.  They looked at me like I had grown a third head until I showed them my glasses.  I showed them how without my glasses I could not even read the title of a book until it almost touched my nose, but with them I could see well.  I told them about some other special needs.  I need coffee before I can have a reasonable conversation in the morning.  Several of the children related to that one.  Their parents had a similar need.  We talked about some more special needs and about how as people we all have the need to love and to be loved.

They were listening and making connections.  It is exciting to see children's minds opening!

I continued and brought out one of my very favorite books, Let's Talk About It:  Extraordinary Friends by Fred Rogers.  I of course had to explain who Mr. Rogers was, but after that we explored the book together.  Mr. Rogers did such a great job with children because he was also very honest...even when speaking about difficult topics.  His text was simple and straightforward.  He introduced his readers to six children some of whom had special needs and some of whom were typical (or at least as typical as children get).  Beside the picture of each child was a description of who that child was and the things that child enjoyed.  Mr. Rogers would have been pleased as the second graders on this carpet lit up with each description.

"I like to play dress up too."
"I love pizza."
"Hey, I play soccer!"

The children were excited about each of the little ones the book introduced and as yet were not paying a lot of attention to the special needs and equipment that some of the pictures displayed.

We continued to read.  The photographs in the book showed all the children going through their day.  It showed the kids at school and at meals and at play.  The text reassured the readers that it is OK to wonder about others and it is OK to be curious.  Mr.  Rogers encouraged the children to ask questions if they want to find something out.  I got to encourage the children on the carpet to ask questions too. I got to tell them all the things I wish I could tell adults that are uncomfortable in Isaac's presence.  It is OK to wonder.  It is OK to ask.  It is OK to be curious and want to find things out.  Any question is OK as long as it is honest and kind.  I got to show the kids that people are more alike than different and then I got to show them pictures and videos of Isaac.  These children did better than I could have imagined.  They opened their eyes and saw Isaac's antics.  They laughed when he was being silly and smiled when he was being cute.  I reported Isaac's accomplishments and I told them about his special needs.

Then I asked if they had questions.  Hands shot up all over the carpet.  One girl asked why her mom's friend with special needs would sometimes get behind her on the couch, count to three and push her off.  I wondered with her if sometimes we don't get our behaviors confused.  I asked her if she ever got called down for using an outside voice inside.  "Oh, yes." she assured me.  I asked the others if they had ever gotten in trouble for throwing a ball in the house.  Several kids responded positively to that one.  "Well," I wondered, "what if your mom's friend got a little mixed up.  Pushing you on a swing is great...but pushing you off the couch isn't so fun."  That made sense to the child.  Another friend from the carpet asked about someone she knew with special needs who would approach and feel her hair.  The girl in front of me said that a young girl she knew spoke differently and repeatedly complimented her hair.  We talked about so many different situations.  It was an open discussion of differences and similarities.  I so wish grown ups could be as mature and forthcoming as these children.

It was time for lunch so we had to discontinue our time.  I think we could have talked a lot longer.  Throughout the conversation, the children were understanding more and more that people are all people and that everyone has the same basic special needs...the need to love and to be loved.  There are so many important things to learn in second grade.  There are so many lessons to be learned.  I pray that these children will hold onto at least that one lesson on that one day...that we are all important, we are all special, we all have value and we are more the same than different.

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.

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.    

41....and Changing the World

OK Dear Friends...Permit me a slight bit of nostalgia.  My birthday is next Monday.  I will officially be on the back side of 40....that sounds horrid.  You know what I mean though...I will be 41.

It's difficult to think of myself as 41.  Isn't that supposed to be an age when someone is officially an adult?  Surely not!  I still believe that one of my missions in life is to bring back pig tails.  My all time hero is Mr. Rogers and my favorite treat is marshmallows in my oatmeal.  There is no way this is the behavior of an official adult.  Sigh....

I remember as a child thinking I would change the world.  I envisioned myself in a high power business suit and heels strutting around an office with a briefcase and a kick butt death glare ready to eradicate all who thought to thwart my path.  But that's not me.  Never has been.  I found a path that suited me more.  I found out a different way to change the world.

I love.

I encourage.

I teach.

I change the world.

God has granted me the opportunity to minister first to my husband and my children.  I get to cheer them on, encourage their strengths, and support their journeys.  I get to teach my children how to love, how to look for the needs of others, how to encourage and help those around them, how to share burdens, how to distinguish what is really important from what society says is essential.  I get to help fashion these amazing people that God put in my care.  I get to encourage their spirits and help form them into the glorious creations God made them to be.  I get to change the world.

God has granted me the opportunity to minister to friends I know and friends I have not yet made. God gave me a hunger to encourage and to support.  I have had the privilege of providing a smile and a few words to let tired and fed up people know they are making a difference.  It sounds so negligible to the rest of the world, but I have seen the difference a sincere smile, a hug and an open heart can make.  It can change a person.  It can change the world.

I ditched the idea of heels, hose and a power suit a long time ago.  I feel much more comfortable in jeans and a tee shirt.  Birkenstocks are a lot more comfortable than heels.  I think the world could do without my contribution as a titan.  I hope I have made a bigger difference with love.

My goal for the next 41 years...use the gifts of love and encouragement that God has given me to share...and yeah....make pig tails trendy ;)!

Reshaping Mother's Day

I have never liked holidays that are exclusionary.  Mother's Day as defined by the Publix commercials (our modern day equivalent to Currier and Ives) is a fuzzy romantic remembrance of idyllic family togetherness dipped in chocolate with candy sprinkles on top.  Those fictitious displays are beautiful and may serve to move some cookies and cakes through the check out lines.  More likely those commercials serve better to move great amounts of  alcohol and binge chocolate through the check out as folks compare messy loud reality to a sweet, sensible, serene haze of fiction.

I swear I'm not bitter.  I love sweet and sappy...when its fairly owned and not set up as an unattainable ideal.

Mother's Day, as most people celebrate it, causes more tears and disappointment than anything else.  If you have been blessed with a beautiful, compassionate, loving mother, it will mean much more to her to share your appreciation often instead of saving it up in one lump sum to be dumped on her kitchen table in May.

And then there are those who would never make the audition for the Publix commercials.  Mother's Day spawns pain for those who have tried to have children but who for whatever reason cannot.  Mother's Day rips open scabs of pain for those who have been abused by the women who bore them.  Mother's Day smacks those who have been abandoned or who have seen more rejection than love from their mothers.  Mother's Day can be hard for mothers whose children are struggling with their own behavioral and legal issues.  Mother's Day is relentless because of what we have made it.

Mother's Day needs reshaping.  Why not use Mother's Day as a time to celebrate and practice those ideals that we espouse to the day?  Why not use the day to practice kindness and compassion?  Those who seek to commercialize our guilt and shower the women around us with flowers and jewelry cannot make money off of the reality of mothering.  Mothering is messy.  Love is messy.  Compassion and kindness call us to go out of our way and be bothered by those who are the most demanding but also the most needy.  Love isn't usually aesthetically pleasing and any mother worth her salt knows that.  Cleaning poo, vomit and other bodily liquids isn't a grand aspiration of many.  Why not honor those women...those people... who have influenced our lives with love by showing them what we have learned?  Why not do what good mothers around the globe do every moment?  Look around.  Open your eyes.  See what needs doing.  Do it.  Mess and inconvenience and preference be damned.  If you see it, its yours to help with.  Show others what it is to love and to be loved.  Celebrate that and you will have moved Mother's Day into a viable, valuable day worth the honor ascribed to it.  

Isaac Can...

Isaac loves to be the first to greet each new month.  He gets so excited that he stays awake for three solid days jumping up and down in his room all night long.  "Almost May.  May 1st."  He started last week trying to progress on to May. Every calendar had been flipped and we had no idea what month or day it was around here.  Finally, today I gave in.  Today is the last day of April and the calendars are beginning to tear from constant flipping.  "You're right, Isaac.  Tomorrow is May.  May 1st tomorrow."  There is no way that child is going to go to sleep tonight.

Isaac is moving forward but I am taking a quick moment to look back.  April was a very full blur.  So much happened so very quickly with Isaac's face book page and with the blog.  So much has happened that has resulted in the same outcome...a change in perspective.

Even as a mama, it is easy to get swept into the Land of I Can't.  I have been told since I first held Isaac up to the professionals at large that Isaac Could Not Nor Would He Ever.  As a parent, I understand that my first job is to celebrate my children, but the incessant drone of diagnostics and harsh statistics does tend to squeeze the optimism out of even the most ardent pillar of strength.  

Champions of children with special needs are at great danger of being eaten by the alligators of rationality and sensibility.  These dangerous beasts assault with factoids and worse case scenarios as they drag the champions into the swamp of despair where hope and optimism are consumed with the veracity of a fresh kill.  

Yeah, I've been there.

But there is a way to crawl out. 

First, we must realize that we must crawl out.  These children have so few champions that we must return to fight for their cause.  

Next, we must change our perspective.  The teeth of those that "know better" are the facts and statistics that draw their dark realities.  Their weapon is their ability to draw our attention away from our children and to their despair.  I do understand reality and the need to face it head on...but I have found that life is all about perspective.  As champions of children, we do not have the luxury of a dark perspective.  We must shift our glace.  We must look to any hope and light we can find.

We must realize the wonder of the children we champion.  We must recognize who they are, what they can do and by whom and with what purpose they were created.  Our children are uniquely challenged and we may have to look hard to find their "I Can"...but it is there.  Since I have begun this outreach for Isaac, I have been overcome with what my son can do.  

Isaac can bring so many of us together.  Let's face it folks...we are an eclectic group but we have all come together to champion a child.  

Isaac can inspire.  I have had the pleasure of hearing some of you say that when you are having a difficult day you look to Isaac's page.  If Isaac can accomplish, so can you.  You're right!

Isaac can do so many things and with each account of each accomplishment, he can change us.  He can shift our perspective so that he is no longer a special child to be pitied, but has transformed into an amazing young man to be celebrated.

Isaac can make you smile.  He can open your heart and your mind.  When you follow my son's journey, you become more accepting of others around you who have unique needs.  You remember that we all have something going on and are kinder.  Isaac can soften your spirit and sometimes even your tongue.

Isaac Can...do all of that and so very much more.  Thank you for the opportunity to share with you.  Thank you for letting Isaac in.  

April is over but Isaac and I will keep writing and posting.  Autism Awareness Month is at an end but Isaac's autism is not.  We will keep on achieving and celebrating!  We hope you will keep on reading and liking and commenting.  We will work to spread love and encouragement.  The world needs more of that anyway!

Love You Sweet Friends!  

The World Needs A Hero!

Today is Hero Appreciation Day!  Around here, we hear a lot about heroes.  Actually, we mostly hear about one hero in particular.  "The World Needs a Hero. I Am That Hero.  They Call Me Larryboy! Wherever There Is Trouble, I'll Be There!  When Vegetables Call Out, I Will Answer! Evildoers Beware.  You are no match for me and my Super Suction Ears!"  Isaac knows the whole thing and will randomly recite this heroic Veggie Tale mantra.

I have spent the weekend thinking of heroes and their defining characteristics.  The heroes that matter most are the ones who would rather not be heroes.  They have no superpowers nor amazing abilities.  They have no absurd sense of ego or hubris.  They have ordinary eyes, ordinary resources and ordinary strength.  Their only real heroic quality is their understanding.

A real life extraordinary hero has not blinded himself to the needs of those around him.  A hero looks around and sees what must be done....and does it.  A hero does not promote himself.  How can he when that would waste time?  Time must be spent on what matters.  Time and resources and strength must be given to helping, to healing, to doing what you can because you can.

Heroes aren't born on Krypton. They aren't bitten by radioactive spiders.  They are those who cannot stand by and watch others suffer.  Heroes have displayed the super ability to push out of a narcissistic bubble and see and react to the needs of those around them.  This type of hero astounds our modern age much more than a fictitious one.  Whenever it is discovered that someone has acted in a truly unselfish way that has helped his community, the media descend and ask "Why did you help?"  The hero looks confused.  Truthfully, he looks a bit dense.  He slowly answers,  "Because I could.  Anybody would have done the same thing."

A hero doesn't expect thanks.  A hero wants more than that.  A hero wants action.  A hero expects us to be heroic too.  Listen to his words, "Anybody would have done the same thing."  A hero calls us to be heroic.

Think of the heroes around you.  Think of those that unselfishly offer kindness and love.  Think of those that see a job that needs doing and rise to meet its challenge.  Think of those that stand up to responsibility not for grandeur of accolades but because they have appropriately owned the responsibility to care and to love and to help those around themselves.

Think of the heroes that have touched your life.  Honor them by embracing who they are and what they stand for.  The world needs more ordinary heroes.  Go be that hero.  Tights are optional.

The Land of I Can

Isaac is more like you than not.  He needs a place where he can honestly achieve and feel the pride of knowing that he accomplished something.  Isaac needs to know that he matters.  We all do.  We all need a place where our abilities outweigh our clumsiness.  We need a place where we can try and our efforts are rewarded by success or at least progress.  We need a place where we can achieve.  We need to look around ourselves with pride and shout "I Did It!"

The first casualty of Isaac's diagnosis was his potential.  The label of autism brought with it a litany of things that Isaac would have difficulty achieving and a fleet of dreams that we as his parents watched sail out of our lives.  His early childhood was spent in therapy centers and classrooms.  I remember rushing about to get the children ready to take Isaac to his therapy appointments three and four times a week.  He was surrounded by dull cinder block walls and a mundane repetition of "B B Bubbles go Pop Pop Pop".  It was killing my spirit.  I cringe to consider what it did to his.

Isaac struggles with academia.  It is not his bent.  Language and social situations are difficult.  Traditional schooling and therapy sessions are a necessary part of Isaac's life but they will never be the central part of his accomplishments.  Honestly, they are not meant to be.

Isaac found the freedom to succeed in the woods.  He has found pride and accomplishment as he tames trails, rides in a boat, finds treasure and shares picnics.  Isaac has found his "Land of I Can" in the wilds of the outdoors.  He has found kindred quiet spirits amongst the rangers of the parks we have explored.  Those that safeguard the natural spaces have long known their healing qualities.  There is ready acceptance from those who nourish their own spirits with the diversity of the wild places.

We are freshly back from Spring Break.  We spent it in the gentle mountains of South Carolina.  Sam and I knew it would be good for us all but we were dumbfounded at how great it was for Isaac.  He made connections we hadn't heard before.  He used words to share with us.  He commented.  He smiled.  He laughed.  He proclaimed "We did it! Yea!"

Isaac dictated a poem under the stars beside the cabin at Oconee.  It was short and to the point but poetry all the same.  "Stars.  Bright.  Goodnight."

Isaac made connections about fishing.  He commented about the boat, the pole and fish.  When prodded a bit, Isaac laughed "That was fun."

Isaac even complained in very typical way.  At the end of our trip when Isaac had been without a computer or a Veggie Tale video for an entire week (He has never done that before and we were amazed that he had accomplished this feat with almost no behavioral difficulties.), we listened as Isaac paced around the cabin.  He usually repeats lines from favorite movies but these words were new.  We listened more closely and laughed outright when we heard him repeating "Hike and Drive and Hike and Drive and Hike and Drive" over and over as he made his way back and forth across the cabin floor.  We laughed and we rejoiced at the complaints of our teenage son.  He had never ever put together anything like that before.

The woods fed his language.  The wilds fed his pride and nurtured his spirit.  They lent him identity.  They peeled away his limitations.  The wilderness found his potential and became for him Isaac's very own Land of I Can.

**Special Thanks to the South Carolina State Parks!  Thank you for ushering us into the land of I Can!

God is a Parent of Child with Special Needs: An Easter Gift

I had managed to make it to the car and slam the door before I lost it.  I don't cry sad tears.  I cry when I'm angry.  I cry especially when I am angry about injustice.

How dare they!?!  I wanted to scream out but kept quiet because my sweet Isaac was innocently strapped into his car seat behind me.  Instead, I muttered under my breath and behind my tears, "How dare they as representatives of Christ ignore my son's existence?  How dare they pass him over so completely?  How dare they not include my son without so much as a glance his way just because he is not like them?  How dare they ignore and judge and devalue just because they don't understand?"

We had been to Bible School.  It wasn't our church but it was one in which we knew people.  It was a good opportunity for socialization for Isaac and for me.  Not wanting to impose and because I love children and grew up in Christian education, I had volunteered to shadow Isaac who was about five at the time.  I tried to bridge the gap that spanned between Isaac and his typical peers throughout the week.  Isaac struggled (still does) with communication and socialization.  Luckily, I don't.  I engaged the other little ones and helped Isaac to participate in their play.  I helped to sow the seeds of understanding that they had more in common with my son than not.  I understood their reticence. These were little ones and most had never been exposed to a child like Isaac.

I watched as they began to accept him as the week wore on.

And then...

And then about Wednesday....as our class rotated with the group to the Bible Story area...it happened.

Isaac was literally passed over.  It would have been easy to have forgiven the children if they had exposed my son to this injustice...but this...this came from adults.

We all sat and listened to the story.  The leader began separating the children into groups spread throughout the room.  All those with blue shirts were Pharisees.  All those wearing yellow were Sadducees.  The crowd were those children wearing red.  Isaac and I waited expectantly.  Every possible wardrobe combination was named except the one Isaac wore.  All the children had assembled into the various assigned groups.  I watched dumbfounded and cradled my son in my lap who was thankfully socially unaware as the Bible story was played out around us.  I kept thinking...surely now...ok, maybe now...there would be a part for Isaac.  He would of course be included. The children weren't doing anything difficult.  They would wave their hands when their group was pointed to.  Isaac could do that!

I chose not to have a temper tantrum in front of the group of small children as they were led to present their Bible Story.  As hurt and angry as I was as Isaac's mama, I understood that would have accomplished very little.  Isaac and I waited till the story was over.  I quickly took my son, went to the car, strapped him into his car seat, turned on the radio and threw him a toy.  I fell into the driver's seat, slammed the door and lost it.

The indignant accusations soon spiraled into a red hot angry conversation with God.  God is a big God and He is understanding of his children.  He can handle our honest anger.  He is big enough for that and I was in the mood to be honest and angry.  "How dare you?" screamed my soul.  "How dare you expect me to imagine that you came to this world to experience my hurt.  How dare you claim that you understand my situation?  You have never experienced this!  Your son was perfect.  How dare you claim to speak love into my heart that cares for this child with severe special needs?"

"My son is different.  My son is misunderstood.  People are afraid of this beautiful child.  They are afraid of this little one that came from my innermost being."  Tears were flowing and my tissues could not keep up with my nose.  I hit the steering wheel sitting alone in the parking lot with my indignant wounded soul and my innocent and unassuming child.

"You cannot possibly understand how it feels to have people...your people God...to misunderstand, to cast out, to ignore, to disregard a child...because he is different.  You cannot possibly understand what it is to love and nurture your own treasured child  and watch as others berate and mistreat him."

I took a breath.  Well kind of.  My breathing was stifled by my tears.  My rage gave way to absolute soul wrenching exhaustion.  I began to quiet.  In the quietness, I reflected on my accusations.  Tears welled up again.  They were different though.  Not the enraged tears of a wounded mother protecting my young, these were quieter heart wrenching tears.  I don't use that term as a cliche.  I literally felt as if my heart was a washcloth and the tears were being squeezed from my soul as I realized.  

God is the parent of the most special needs child of all.  His son was completely different that any other human ever created.  Jesus' perfection made him atypical.  There was no baby ever made with greater care or more treasured than God's son.  God put all his love into that child.  He presented this baby with pride as a gift to the world.  God saw the perfection and beauty and grace of his own.

And then...He watched.  He watched as his boy was ridiculed and misunderstood and passed over and ignored and cast out....because Jesus was different.  He watched as Jesus was berated and disregarded and tortured and killed.

Oh God.  He understood and He knew.  The realization hit.  Still in the driver's seat of my parked car, I collapsed into the arms of the Creator of the Universe and wept.  I let him hold and comfort my soul.  I crawled up into the lap of God and let him quiet and calm me.  All the while, Isaac sat in his car seat listening to the radio and now flipping through his Veggie Tales book.  

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".

It's Autism Awareness Month...What I'm Aware Of

It's April.  April has been designated Autism Awareness Month.

There are not adequate or accurate words to share with you how challenging autism can be....at least not that I can muster right now.  I'd rather share with you what autism has made me aware of and how my son's diagnosis shapes me into a better person.

Autism has made me Aware....that there is no such thing as a small achievement.  I used to take for granted the everyday mundane things.  I would have never thought to rejoice to see a toddler pointing at what they want or pretend that a tupperware lid was a cookie.  Every step is a big deal.  Every move ahead is noteable and noteworthy!  Everyday brings so many new opportunities to learn! And every new thing discovered is worth rejoicing over.

Autism has made me Aware...that the quietness of kindness and love are more forceful than the mightest hurricanes of uncertainty or fear.  Why is it that we are taught that kindness equates to weakness?  Kindness, compassion, love...these are the lights that break through the darkest evils.  Everyone has uncertainly.  Everyone has a burden.  Our souls are thirsting for those lovely intangibles of kindness, compassion and love.  Autism helped to teach me that.

Autism has made me Aware...that anyone can minister....and should.  We are community.  It is our job to notice those around us, to see need and to meet it.  Autism went further on this point.  We are all important enough and capable enough to minister to each other in some way.  We are never so incapable that we cannot love.  We are never so incapable that we cannot inspire.

Autism has made me Aware ...that life is made up of moments.  The difficult ones will pass and we can make it through.  Hope inspires and gives us the will to get to the next moment.  The beautiful moments pulse joy.  They sparkle with wonder.  Autism has made me aware enough to recognize these glorious moments, to seize them and play in them.  Rejoice!  Play!  Laugh....Loudly!  Grab it, Enjoy it and Cherish it.  Tuck it into your most special memory pocket.  It will grow into hope.

Autism has made me Aware...

The Light of Hope

I have always loved to celebrate.  Why not smile?  Why not take a moment and remember the good?  But it has been Isaac who has taught me the necessity of celebrating.  It is not idleness that commands us to stand back and reflect.  It is our intrinsic need to focus on the things that really matter to the world.

I remember the first year after Isac was diagnosed.  He was two.  His younger sister was six months old.  I dreaded the diagnosis even though I was smart enough to know it was coming.  I dreaded the Pandoric Box I was sure diagnosis would open.   Slowly and bravely, we approached the diagnosis and were immediately surrounded by whirlwinds of acronyms screaming around our Happy Laughter.  The sinister shrieks of therapies, evaluations, specialists and agencies consumed our ears with deafening cries that threatened to drown out our Isaac's laughter.  The nemesis of laughter is despair.  It flew out of the diagnosis and descended into our hearts.  Autism consumed our thoughts and our schedules.  

But do you remember the story of Pandora?   After all the demons escaped, something else was freed.    Something small....and seemingly insignificant....Hope rose. Out of that horrid diagnostic day, Hope appeared.   We realized that as Isaac's parents, our primary responsibility was to grow this Hope and to harbor her sisters Faith and Love.  We resolved that while we could not ignore the more difficult aspects of Isac's diagnosis....we would not let them define Isaac or our family.  We would harbor Hope, we would celebrate achievement, we would take joy in baby steps and hold tight to the faith that we could make it through.  Hope provided the light to help us remember that our son was not autistic.  He was and is... Isaac.  Happy Laughter.