A Note to The Care Givers....From One Also in the Trenches

Hello Sweet Friend-  I am so glad that you managed one free moment and I am so honored that you gave it to me.  We never thought we'd be here, did we?  We had such plans for our lives.  Cleaning poo and dodging bites were never a part of those plans for me.  I remember growing up that I wanted to change the world.  I got the education. I got the job.  I was on my way.  Then life came to call.  I was enlisted to this just like you.  We were called.  Life and love demanded our service.  We didn't have to stop our lives.  We didn't have to jump off our track to success.  We made a choice but it was the only choice that our hearts would have accepted.

I know you know how hard it is.  I feel like I am stumbling though from one moment to the next.  There are no child rearing guides as to what to do when your teenage son is howling on the porch.  I tried to figure out what he wanted but he cannot reach the words to tell me.  I tried to calm him but he insists that he is "sad".  And who am I to redirect and tell him that he isn't?  Who am I to invalidate his feelings that he is so loudly expressing?  I finally walk away and let him howl but not without saying a quick prayer that the neighbors won't call the police.  Sometimes a soul has to howl.

Perhaps we would all be more sane if we howled.  Sometimes I want to.  I want to howl and weep when I realize where our journey has taken us.  It shouldn't have been this way.  We sought treatment when we got confirmation of what was happening.  I threw myself into treatment plans.  I spent hours trying to grab my child back from the land that he sought with his blank stare.  We should not be here.  News reports of scientific studies all but promised that intensive early intervention and proactive parenting make up the gilded path towards recovery.  Except when it doesn't.  On top of the day to day struggles, I am overtaken with guilt.  Maybe if we had done more....but what more was there to do?

I sometimes want to howl for sadness.

I want to howl when I realize the place where we have found ourselves.  We are in the land of inevitability and resignation and pity.  There is a difference in the way we are looked at, my son and me, than when we first started our journey.  At the start of our journey, we were thrown to the care of twenty year old young women who were full of hope and who demanded adherence to their directives.  These sweet things were bent on extracting the autism and cognitive impairment from my child with a syringe of intensive behavioral training.  They were made more passionate by his very slow progress and redoubled their efforts to save my son.  These sweet cherubs fought round upon round with Isaac's autism.  He awarded them with slow...very slow...progress.  It was inevitable.  They tired.  We all did.  They left and tried their strategies on other younger, more responsive, children.  They were forced to give in to Isaac's autism.  I watched as one by one the cherubs left us, saddened in their defeat.

A stoic fog of resolve set in and sucked our hope away.  The professionals changed ages and faces.  Those who would aid us now were older and wore wiser faces.  They knew.  This was the best we would get.  Isaac's challenges would severely challenge us all indefinitely.  We began to look not so much at how we could fight to get him better but rather how we could so order our environment to make things more comfortable.

The sane soul wants to howl for the brutality of resignation.  It wants to screech in defiance of the future...both his and mine.  It wants to shriek at the inequity.

And yet, I don't join my son in his howl.  I am tired.  Oh so very very tired.  I sigh.  I wonder at it all and in the end I resign myself to the stoic advice..."Keep calm and carry on."

I walk in the house and do the dishes.  I check on my younger son's homework.  I quiz my daughter on her spelling.  I clear the table.  My hands know the motions and I know the importance of keeping on.  In the midst of everything, we must keep moving.  My children need me.  Isaac will calm himself soon and he will be hungry.  He needs my help.  If I give up, what chance does he have?   Keep calm.  Keep steady.  Keep moving.  Carry on.

To you, sweet reader, I say...Keep On.  You are making a difference... just not in the way you may have preferred.  You are changing the world.  It is the very small act of love that makes a world of darkness crumble.  I know you are tired.  Trust me, I know.  I know your spirit wants to howl. It may, but only for a moment.  You are needed sweet friend.  So am I.  We are needed to show the world that love and steadfastness and care are not dead.  We, the caregivers, give the world what it needs to survive.  We are the ones who moment by moment save society from the instinctiveness of cruelty. We show what humanity and love are.  Love is born in the act of moment by moment care giving.  Its a painful process and we are the ones who are chosen to show it.  We are strong enough to endure the birth of love.  Keep On.  We must.  We are called.  We are needed.

A Letter to the Mom of a Typical Child from Me...A Mom of a Child with Special Needs

First of all, special needs is a misnomer.  We both have children with special needs though mine has autism and yours is typical.  Our children are unique to their own personhoods and individulalities.  So lets strike that title.  This is just a letter from me to you....one mama to another.

Our journeys are in many ways so very similar.  We were both given an miracle to care for, to comfort and to guide.  We both looked forward in anticipation to the arrival of our little one and both our lives were forever changed the moment we were introduced to our bundled and blanketed babe.  We were both overwhelmed with a weird mix of doubt and love and joy.  We both felt a ferocity of protection towards our infants.  We were both brand new mamas and had both been given the highest responsibility- that of bringing up a child.

We were both overcome by those first few days, weeks, months and years...for similar reasons if you think about it.  Is our child healthy? hungry? in need of anything? safe? liked? loved?

We're both still overcome by those very same thoughts, aren't we?

The only difference between us, dear sweet friend, is that one day someone came to tell me that my child...my love-my contribution to the world-the very best part of me- was less than perfect.  One day, someone told me that there was something wrong with my child.

That person then led a parade of other somebodies to invade my family's doctor's office, our home and our school.   They wrinkled their noses and squinted their eyes.  They examined my baby and found him defective.

Their titles and degrees alone shielded these arrogant offensive ones from my wrath.  Its amazing what we will let people say about our children if they have a properly distinguished title.

Then, these professionals told me exactly what and how much was wrong with my child- how delayed he was and with which disabilities he had been affected.  My child lost his name to the world that day and gained labels.  He was no longer Isaac Asher- Happy Laughter-

In a moment, he had transformed from Isaac to autistic, handicapped, disabled and delayed.

That was the day that you and I, sweet friend, parted ways.  You continued on your journey of swimming lessons and soccer matches and I started off on a new road of therapies and advocacy.

Dear friend, like you, I brim with pride for my child.  I have seen him overcome so much and achieve wonders I never dreamed possible.  Society though is still distracted by his many challenges and failings.  I merely rejoice that he has learned to smile and tell me that he loves me.

I helped my child attain every word, every skill.  I taught him to obey societal rules and to ask for what he needs.  I did that so that the world could better learn to accept him for his wonder and not be blinded by his differences.

May I ask a favor of you, sweet friend?  You know as well as I do that our circumstances, yours and mine, were chance.  Either one of us could have been given a child with challenges.  Either one of us could have traveled the path I am on.  It could have been you writing this letter.  It could have been you trying to figure out how to ask this favor of me.  By chance alone, it isn't.

I need you to teach your child- your typical child whom the world has deemed worthy of a place in society- your child who has passed inspection- about love and acceptance.

I need you to teach your child about my child.  I need you to teach your little one to love and appreciate individuality and uniqueness.

Teach your child not to fear those who are different than himself.

Teach him the truth, that all of us are treasures and worthy of the highest honor.

Teach him kindness.  Show him how to seek out those who need encouragement and then to bestow love.

Teach your little one compassion and empathy.

Teach your child the validity of other people's feelings and of his own.

Teach your child love.

Tell him of his purpose- our purpose as humans- to journey together; to take care of each other and to step out together in achievement and in hope.

As one mama to another, I know how important our role is.  We shape our young ones.  We contribute and can sculpt our dear ones into helpers or hoarders.

I ask.  I beg.... please teach your child to love.

The future of my child depends on it...

With all my love....  Isaac's Mama

Targeting Autism

I squinted at the screen and sipped my coffee, skimming the news stories of the day.  I always feel the need to check to see if the earth is still spinning.  If I ever find that it isn't, I'm going back to bed.  This morning I saw a headline about two teen age boys that targeted a young man who was different and beat him.  The man had done nothing wrong but his differences had been spotted and targeted.  The boys had given in to a very basic instinct of cruelty and pursued the young man on several occasions so that they could inflict pain.  Then they pridefully posted their exploits online.   This story comes just days after another news story reported a separate  group of teens who tricked a young man with autism into a degrading and dehumanizing situation in which he thought he would be participating in the ALS ice bucket challenge.  The peers he was with made him strip to his underwear and made a video of the young man being doused not with ice water but with a vile concoction of excrement and spit.  

It should be difficult for anyone to read news stories like this.  It has been difficult for us to digest these stories here too.  We have had to inform Isaac's sister, Eva, of the recent happenings.  She is in high school and the videos I have described have become viral.  I would rather she hear about this stuff from me.  I warn her when I read stories like this.  She is only 18 months younger than her brother and she has grown into an amazing combination of strength and sensitivity.  I hate having to keep her abreast of tales of cruelty.  She listens stoically and vulnerably.  I didn't know you could be both stoic and vulnerable until I had related one of these stories to her.  I have to tell her to be on guard for Isaac and for others that she will interact with at school.  Be kind to those who are different and who may be targeted.  Watch out for them.  Listen.  If you hear anyone bragging about this kind of idiocy, tell someone.  She nods.  Her experience as Isaac's sister is so very different mine as his mother.  I wonder at how she perceives all of this.  I am almost scared to know.

The severity of Isaac's autism relieves me.  These most recent accounts of cruelty have been directed at those who have much greater functionality than my son.  It is much more difficult for anyone to harm Isaac because he is always under adult supervision.  What an odd blessing.

My heart goes out to the victims and their families.  People with autism make the perfect targets. Their main struggles lie in the areas of socialization and communication.  What an amazing opportunity for bullies!  Here is a population that won't spot your devices and won't report you.  you don't get better than that.  They are so easy to target.  Parents have fought epic battles to have their children with autism included in typical classes.  Many families have spent thousands and thousands of hours and dollars teaching their children with autism how to approach peers, how to participate in a conversation and how to make a friend.  The thought that a typical peer would take an interest in a child with autism is thought of as a monumental event in the life of the whole family.  Everyone rejoices that this child who has struggled so much socially over the years might actually have a friend.   I cannot imagine the feelings that must be washing over the victims and their families.  Betrayal, Anger, Guilt, Hurt,.... I have learned that nothing can lay your soul so bare as to know that someone has hurt your child.

And yet, how very cowardly to choose this population.  These teens have chosen to target a group that cannot fight back...at all.  Dear Lord in Heaven, what is growing this amount of hate?  How can that much darkness be quelled?

Hate grows hate and there is no weapon or curriculum or law or mandate that is strong enough to stamp it out.  The only cure is the decision of each individual to stand against it.  Your own decision to look beyond the differences and see the similarities...your decision to teach your children that there are always more similarities than differences....your realization that everyone is valuable...those flickers of hope and love shining together with the hope and love from so many others....that is the only stand we have as humanity against such cruelty.



  

A Tragedy...

I read a news article and my heart broke.  A mother of three children one of which was affected severely by autism pled guilty of attempted murder and will soon be sentenced.  She had been an involved parent and a stalwart advocate of her child and others with autism for over ten years.  She had researched and fought with agencies trying to get help for her child and her family.  At the same time, she daily dealt with the behaviors that defined her daughter's autism.  The teenage daughter was big enough to hurt herself and her mother and her siblings when she was aggressive.  The girl had difficulty containing bodily fluids and did engage in negative behaviors such as smearing feces.  The mother reached a horrid moment and attempted a murder-suicide via carbon monoxide.  They were found before either expired.  Just retelling this story breaks my heart.

First the obvious, severe behavioral challenges do not justify an attempt to end a life.  I do not condone infanticide.  Challenging behavior, even severely challenging behavior, never gives a caregiver the right to take a life.

However, there is so much more to this story.  There is a tone of desperation that should not be missed.  Autism is diagnosed more and more frequently and a number of those diagnosed are severely affected.  I have tried to give you within this blog, sweet reader, a tiny peek as to certain aspects of what life can be like with Isaac.  I give you no more than a tiny peek because I do not think you could handle more than that.  I love my son dearly, and we do the best we can ....but I would not wish this experience on anyone ever.

I have been hit and bitten and kicked.  I have been bruised and I have bled.  I have cleaned out feces from every toy, room corner, and article of bedding.  I have cleaned feces out of teeth, nails and ears....while being screamed at and hit.  I have showered my child at all hours of the day and night.  We have rethought room construction and accessories in response to Isaac's pica (eating non edible things).  We are sometimes a half of a step ahead of Isaac's autism but are usually just figuring it out as we go along.

In the midst of these behaviors, we have fought and advocated with every available agency.  We have begged and cried.  We have written our legislators and have become indignant at their responses and the lack of real help.  Isaac gets every available service that exists here.  It is in no way enough.  At the end of the day, it is me and Sam interpreting, managing and mitigating Isaac's behaviors.  I have written at length about how this impacts our family and our ability to get about in the community.

There are more difficult situations.  I am not envious of them.

I am lucky.  I have an amazing husband and we share the responsibilities of caring for Isaac.  If one of us needs a break, the other parent steps in.  Some are single parents.

To be honest, I don't know which was the most difficult day...the day Isaac was diagnosed or the day I finally realized that help was not coming because help of the sort that would actually help did not exist.  Neither were great days.

I am lucky.  I have the ability to take life moment by moment.  I categorize my life in two time periods...now and not now.  It is a coping mechanism and it helps.  I get through the now.  I clean or deal with a behavior or argue for a nonexistent service in that moment.  The moment passes and I may have a moment to take a deep breath.  That is a good moment.  I thoroughly live there until the next moment sweeps me forward.  Moment by moment....step by step.

The mama in the news story got overwhelmed by all the not now.  Not now past is full of very difficult memories.  Not now future is full of worry.  Both not nows will crush you.  My heart breaks that my peer got swept into the not now and followed it down its overwhelmingly forceful bleakness.

I pray that this case will shed some light on the realities facing many families.  We need help desperately.  Our children need services now and will continue to need them throughout their lives. This news story is a tragedy but perhaps it can serve as the canary to alert the populace of the overwhelming need that is at hand.

Just Persnickety...A Mama's Confession

People really don't know how best to respond when they meet us as a family.  Isaac never tries to hide his...nonconformity.  He is exceptionally true to himself which is one of the few positives about his autism.The extent of his challenges is quickly obvious to passersby.  Most are somewhat uncomfortable with special needs.  Its ok to feel that discomfort.  Its a basic and evolutionary feature of who we are as humans.  We are genetically designed to look out for what is different.  Different in the wild often meant dangerous.  We scan, we notice, we evaluate.  People used to shy away from this unpleasant social situation by hiding their relatives with special needs.  Society is just now seeing families out and about who care for someone with special physical or intellectual challenges.  Good people are often overcome.  They try to process what they see.  They approach the family and say to the caregiver, "I don't know how you do it."

To be clear, I am not a superhero.  I never was a super mom.  I gave up on the pursuit of perfection a very long time ago.  I am oh so very very very human with so many flaws.

Truth is, I don't know how I do it.  I'm not sure of what it is that I am doing.  I am maintaining I guess.  I am treading water.

Want to know a secret?  I don't like having a child with autism.  I love my son, but I do not like his autism.  Not at all.  There are those who embrace their martyrdom.  Not me.  Caring for Isaac and navigating the murky whirly enveloping waters of "service" entities is the most difficult thing I have ever done or could imagine doing.  I don't like it.  Not one bit.

Another secret...I am not strong except in the strength that comes from weakness.  I'm not sure if the quality I possess is strength or just stubbornness.  Stubbornness makes much more sense.  I endure.  Sometimes, moment by moment but I endure.  I endure because of the commitment I have to my children and to my husband.  Not enduring, not persevering is not an option.

Still, there have been several natural consequences to parenting Isaac.  I like thinking of natural consequences.  They are the logical result of given circumstances.  They are not good or bad and are not drawn from heaven or hell...they merely exist because of the actions that led up to them.

Some of the more negative first (so that we can end with the positive):

I have been meted a fair share of sorrow.  I grieve the child that didn't come.  I grieve the futures and story lines that could have been but aren't.  I also grieve the person that I am not.  Its funny.  The world sees my strength but I, mistress of my most secret thoughts, am inundated by my fears and failings.  I am not the person I would have chosen to parent Isaac, but it wasn't my choice.  I grieve the present that sometimes surrounds me.  The smell of urine, the look of aggression in my son's eyes, the sound of escalation.  They can form a very dark cloud that threatens to overcome me. My spirit stamps its foot.  I don't like it.  I have cried. Worse yet, I have been drawn to a place of despair and have found that safe spot alone in my bed that I did not want to leave.  I have come close to giving up.

I have been showered by anxieties.  Is he going to hurt himself or someone else?  Does this professional know what they are talking about?  Why are they not helping?  We have dealt with incredible levels of incompentencies.  Agency heads have seated themselves on my sofa and taken attendance.  I stared dumbfounded as I have been asked in my own living room across the table from a "professional" if I was present.  Really?  And you are the one I have called in to help?  Really?  At that time, Isaac was aggressing, eating non edible things (walls, mattresses, and much worse), attempting to carry large appliances up the stairs and breaking into neighbors homes to watch their televisions which were somehow different from ours....and this supposed helper wants to know (as they look right at me) if I am present as we are meeting in my living room.  Oh, God in Heaven please have mercy.  That is the most comic of the anxiety provoking situations we have dealt with.  Others have dealt with everything from bruises (hand shaped), bites and scratches received at school, to truancy meetings when Isaac had been to the doctor too often (each with excuses from the doctor and some visits at the request/order of an over involved school nurse), to the questioning of my parenting skills by those who thought they could do it better than me.  There are fifteen years worth of stories.  Too, too many for one post.

There are positive natural consequences too.  They are born out of the trials of the negative consequences.

I am grateful.  I see and notice kindness and progression and hope.  I am able to encourage in a more meaningful way.  I can offer hope because I know the darkness.

I am persnickety.  Southern word.  It means stubborn and willful and crafty and mischievous all rolled into one.  I persevere and I am persnickety...two different traits that parenting Isaac have grown in me.  These two traits together are what I think people mistake for strength.  Perhaps they are unfamiliar with the term persnickety.  I am not so much strong as just enduring and I will get my way...eventually.  I want what my son needs and I am persnickety enough to get it.  That obstinate determination has been born of so many who have endeavored to placate and patronize my son's needs and my own intelligence and instinct.  We have endured so much that I am truly frightened of very little.  I grieve the situations we are continually pitted against but I will never just give up.  I am too persnickety to give anyone the satisfaction of putting my son or me into a conformist box.

I am grateful to be able to see beauty and to know gratitude and grace.  I relish my persnickety-ness and spirit.  Both my gratitude and my persnickety spirit continue to grow under the weight of the sadness that will not be fully lifted and the pelting rain of the anxiety provoking incompetence that will not go away.  The lack of reprieve is not fully bad.  The natural responses to the hardships of life prove my sanity.  If I were never sad nor worried in the circumstances of caring for Isaac, I would be delusional.  I see the reality.  I respond with the sanity of grief and worry.  I daily attempt to use that grief and worry to procure enough strength to persevere and to grow my persnickety spirit.

What Do You Do with Quiet?

Listen to that...hushed stillness...not a noise except the birds outside calling to each other in the trees around our house and the buzz of the insect trapped in the light fixture.  Look, not a movement save my own fingers pecking away at the keyboard.  When did the clock tick so loudly or the fridge make such commotion?  It is all still and quiet.  I like it but it is so strange.

Many parents report this phenomenon the first day of school but few mean it in the same way that I do.  I can always hear traces of Isaac.  He is noise.  He is motion.  In perpetuality.  There has not been an instant during the last few weeks and months that the house has been absent the sound of his back rocking against the soft back of the cushioned couch or the hard wood of his seat at the kitchen table accompanied by his incessant hum, hum, humming.  The downstairs ceiling bounces and creaks under the constant jumping from his bedroom.  Those sounds are harmonized with the call of Veggie Tale songs on good days and screaming crys on those days where he is frustrated.  The house still seems to echo those words he repeats over and over and over, "Tomorrow.  Tomorrow is.  Tomorrow is First Day.  Just one.  Present.  Tomorrow.  Tomorrow."

What a blessing is the quiet.  What a joy to hear the wind blow through the trees in the front yard.  For three months, Isaac has given us the moment by moment play by play of our day.  "Tomorrow morning.  Oatmeal."  "Good afternoon.  Lunch."  "Dinner."  "Tomorrow.  Patrick"  "Tomorrow.  Tonya"  "Tomorrow.  Mom and Dad Tomorrow"  "State Park.  Hike and Drive.  Come out and play."  "Big Smile"  "Sunday School.  Tomorrow"  Those were the good days.  The bad days brought inconsolable screams as he poked his finger in his eye, "Sad.  Why you sad?"  "Very upset."  "You must calm down."  The good days brought goofy smiles and the bad days brought aggressive tantrums.  But always, always, always...there was noise and motion.

I trained my ears to hear his feet coming down the stairs towards our exits.  I perked up whenever I heard any of the children raise their voices, trying to ascertain in a decibel the status of every child.  Were they all ok?  Was Isaac upset?  Was he escalating as he heard another child in a bad mood?  Did any of them need help?  Harmless childhood antics threw me into malease and paranoia.

I trained my eyes to note any and all movement towards doors and appliances.  Where was he?  Where was he going?  How many apples had he had today?  How many bananas?  Was there any glass container in the peanut butter cabinet?  Where were the dogs?  Was he going to let them out?  Was he going to walk out?  Does he have on his brace?  Its too hot for him outside with it on.  Where is he sitting?  Are there ants out there?  Is he ok?  Is he going to the bathroom?  Has he taken himself to the bathroom already and do I need to clean him up?

I was constantly aware of his needs. I shepherded him through all of his bathroom runs and made sure he was wiped and clean.  I helped him wash the oil off of his face at least twice a day.  Had he picked a scab?  I was there with the prescription antibiotic so the wound would not infect from his constant need to reopen it.  I watched to see if his pants had fallen past his hips and if his brace was in the proper position to hold his back as straight as it could.

I took him with me whenever I went to the restroom and handed him a magazine.  I could not trust him for a moment unsupervised.  He would occasionally look my way and tell me about bathroom etiquette.  "We poo poo in the potty."  "If you have to go potty, stop and go right away."  "Yea.  Good job."  Play by play.  There are not words for that.

I did not shower when he was awake.  How could I?

I am the grown up.  I must be ever vigilant.  Anything can and might come up.  The terrible times are when he comes and says "Broken" and hurriedly leads me upstairs to his room.  I pray to the good Lord that it is something I can fix.  Maybe something came unplugged.  There was the one wretched day when his computer fizzled and almost fried.  By God's grace, I fixed it.  There is nothing to explain its operation other than God's pity on me as I sat with all the pieces of the motherboard scattered all over Isaac's bed and then trying to stuff them back in to the box in a way that would this time work.

But now....quiet.  Still.  What do you do with quiet and still?  I long for it and devour its peace but I cannot bring peace to my inner self.  My ears still perk at the slightest sound.  The high pitch of the bird's call outside has set me in a panic over and over again.  My eyes still scan for movement.  I try to sooth my spirit and embrace the quiet peaceful afternoon.  I hush my hurried mind that is already preparing for Isaac's return from school.  I purposefully push away knowing thoughts of the long term consequences of living in an ever vigilant state.  For now, I sit and type and listen to the quiet.

What I Want From the Schools....

Summer is waning and families and children all across the United States are being saturated by Back to School ads and Back to School thoughts.  Kids are nervous to know what their teachers will be like.  Teachers are excited to meet their students.  Parents are nervous and excited.

We buy school supplies and clothes.  We notice how much our children have grown and we get ready for orientations and open house activities.  Parents greet each other in the halls.  Anxious smiles and nervous waves make the entire school hum with excitement.

This scene is normal and familiar to all of us.  Autism though takes the familiar and typical and adds a bull horn.

The truth is....I'm scared.  I have reason to be.  Isaac starts at a new school this year.  A new school means new administrators and new teachers.  There will be new therapists and new assistants.  Isaac's success depends on the competency and compassion of everyone who interacts with my son.  I will not discuss the history that has made me unusually trepidatious.  Suffice it to say I believe my ever present worry is warranted and every sentence within this piece has a two hour story behind it.

School officials are scared too.  I know that.  Parents of children with IEPs (Individualized Education Programs) can scare school officials to death. We tend to be very protective of our children.  We have had to be.  It is difficult (but essential) to give new professionals a fair chance.  We, as parents of children with special needs, have been through so many difficult situations already.

Some professionals are scared to even have conversations with parents of children who participate in special education without convening a full meeting of the IEP team.  Some school officials are afraid that as parents we will ask for dolphin therapy, that we will be intentional thorns in the school's side and that we want to micromanage our children's education.

Sigh....fear leads to lesser communication...and less communication leads to fear and misunderstandings and frustrations....parents and educators can easily be drawn into politics and no one suffers except the children.

I cannot speak for all parents.  I am only Isaac's mama but maybe I can help to bridge the communication gap.  I'll try because I am so very tired of the games.  I have no desire to be an intentional thorn in anyone's side.  I have four children including one with severe autism.  I have neither the time nor the energy nor the desire to be a pain in the rear just for the fun of it.  I do not like having to keep coming back and expressing a dissenting point of view.  I promise.  No part of this is fun for me.  I have no desire to micromanage Isaac's education.  Really.  I am an expert regarding Isaac.  I am an educator.  I am always pursuing the latest information regarding autism and special education.  I will educate myself but I want the professionals educating Isaac to grow their knowledge too.  I have too much to do to rewrite the curriculum.  I know what that takes.  I have no desire to do that.  I do not want to write Isaac's IEP.  I do not want to manage the classroom.  I want Isaac to be educated by professionals who can do all of that as easily and with as much skill as those who educate my typical children in typical classroom environments.

Maybe it would help if I just put it out there.  Here is a list of what I want from the schools.

What I as Isaac's Mama Want:

I want....what is legal.    Honestly, its a big deal to me.  So many have fought in the courts and through the legislative circus to establish laws to protect children who have disabilities.  The law is written.  It has been interpreted and decisions have been put forward to delineate what the law means.  The law has been enforced throughout the years.  Students with disabilities are entitled to a free and appropriate public education.  Isaac falls within one of the disability categories.  I want what he is entitled to...a free and appropriate public education.

Appropriate means that qualified professionals who are knowledgeable about the tenants of education and in Isaac's case of his special needs are working with him.  Appropriate means that basic tenants will be adhered to.  He should be kept safe and clean when at school.  Appropriate means inclusive.  More on that later.

I want...equal access to anything that a typical child would be granted in the school environment.  Persons with disabilities are a protected class under Section 504 which is typically thought of as civil rights legislation and also protects people of every race and gender from discrimination by governmental entities or any organization that accepts federal monies.  I want Isaac to be included, as is legal, in school assemblies, lunch, pictures and school related activities.

I do not particularly want separate programs for my son.  I would love accommodations and modifications to be in place as is legal so that Isaac would have the same opportunities to participate in every aspect of school life if he and we so choose.  I would love to never hear that Isaac cannot participate in a field trip or other program due to his special needs but that there is another program which he may enjoy more.

 Separate is not equal.  Ever.  At all.  We have a long legal history to back that up.  I would love for every child with whatever special need to be accommodated at their zoned school.  Without question.  I would love for every school to be able to provide an appropriate education for each of their zoned students no matter their disability category.  Like I said....I want....what is legal.  What I am arguing for is adherence to a minimal standard.

I want ....educators to look first to the student's strengths and abilities as is purposed in the legislation.  I want the first thoughts to be of how can we as an educational community include children with disabilities into every aspect of our community.  That is legal.  That is minimal.  That is what I want.

I don't want anything extra.  No dolphin therapy.  No private flights to California for additional therapists or treatments.  No luxury gym.  None of that....

 I want the same thing for each of my children that I send to school.  I want to know that they are going to be educated by professionals in their zoned schools under school administrators who look at students with disabilities as members of the greater educational community.  That's all.

I want....what is legal.  It sounds so very simple.  I wish it were.