Questions You Don't Think You Should Ask....The Future?

Its been a while since I've done a questions piece.  They are ridiculously difficult to write.  I have to decide how honest to be with you dear friends.  I have to figure out how honest I can be without getting into a hob gob of trouble...

That's a promising start, huh?

Isaac is healthy with the exception of his cognitive impairment and scoliosis.  His autism is really a neurological difference and not exactly a health impediment.  Isaac is fit and strong.  He is getting stronger all the time.  Isaac has just become taller than me and truthfully would be taller save his scoliosis.  Isaac's body is sound but his cognition is greatly impaired.  It is a difficult situation.  The thing that keeps a toddler alive is the fact that he/she is short and does not have the ability to manipulate simple doors.  Isaac is tall and can get through any door or cabinet.  There is not a place that I can put the kitchen knives where Isaac cannot reach them.  The same goes for the cleaners, appliances and anything else you can think of.  There is not a way to secure our entire house in a way that he could not hurt himself and still function enough to provide food and cleanliness.

Young children are prone to tantrums when they cannot communicate adequately their wants and needs.  They may also act out when they are told no.  Isaac can too.  Sometimes, the answer is no.  Sometimes, I don't have what he wants and cannot get it.  Also, I realize that catering to Isaac's every whim would promote more tantrums.  He needs to be able to tolerate (at least to a point) the terms "no" and "wait".  When Isaac is upset, he may hit and/or bite himself.  He may well reach out and hit or bite those around him.  By those around him, I mean Sam or me as we can spot the warning signs of a tantrum and step between him and whomever he is near.  The laws of nature say that Isaac will only get stronger while Sam and I age.

We have thought about several possibilities for Isaac's future.  Some people live with their adult children with profound special needs until the parent dies.  I wonder at how difficult that transition would be for the adult child with special needs.  Their entire world that has been established since birth is suddenly turned on its ear with no plan or person to assist a gentle transition.  People with autism struggle with change.  I can't think of a more difficult situation to purposefully put Isaac in.  Some people actually have other children so that they can care for their child with special needs.  That's not fair to either child and I could not bring myself to do that.

The only alternative left with any real merit is a group home.  Many will bristle upon reading that last sentence.  Many will think that I don't care about my son.  I do love him.  I love him enough to (when the time comes) research and find a place that is a good fit for him...a place where he will be kept busy and fulfilled and a place where he will be well cared for and loved.  I love him enough to work with the staff of that place and provide a gentle transition into the next stage of life....just like we will transition the other kiddos into adult life.  I love him enough not to let his routines become so ingrained that he will be thrown into regression and confusion when Sam and I pass away and he must live somewhere else.

Our choice will not be the choice that other's make.  That's ok.  We all get to travel our own roads.  Our choice does not involve dumping our son off and forgetting him any more than we would plan to do that with any of our other children.  We will transition them all so that when we are gone, they can still live.

Love you all dear friends....

Questions You Don't Think You Should Ask: How Did You Know Something was Wrong...Part 2

These have been difficult blogs to write.  It is hard to relive those moments of wandering and uncertainty.  It is necessary.  I was always glad for people that had the heart to help Isaac but there was a distance.  They came in and saw bits and pieces of our lives but they never understood the gamut of our reality.  There can be no understanding without honest sharing.  That is why I give these blogs...this history...to you.

I was heavily pregnant with Isaac's sister when the doctor first suggested there may be difficulties with Isaac's development.  Right information- wrong timing.  I have shared in a previous blog how the pediatrician again broached the subject of Isaac's development just hours after I had given birth to his sister.  Again, his timing was less than ideal.

Honestly, we knew something was wrong and we sensed the immensity of the problem.  There was something not quite right that was hanging over my toddler like a consuming dark shadow.  I did not have the power to confront the shadow just then.  To have pursued diagnosis at that time would have been to have named the monster and to have released it from Pandora's box and given it power to consume those happy first months of my daughter's life.  My husband and I sensed this. We waited.  I do not regret that decision.

When his sister was six months old, we pursued diagnosis for Isaac.  A friend had called.  She was a very close friend who had earned the right of honest conversation.  I knew she loved my family.  I knew she loved Isaac.  She said she had read something about Asperger's Syndrome and it made her think of Isaac.  She asked if she could send me a link.  I read the information she sent.  It did not seem quite right.  There was a link on the page to autism.  I followed the link.  I read the information.  My Mama Gut Instinct alerted.  I knew. The monster's name was Autism.  Sam came home for lunch.  I revealed the name.  I looked into my sweet husband's eyes as I told him about the characteristics of autism.  His Daddy Gut ignited and he knew we had named the monster correctly.

That was it.  Autism was the shadow's name and he was now fully unleashed upon our lives. We went to offices.  Professionals came to see Isaac at our home.  Therapies and early intervention rammed through our door and ripped our lives apart. Our peaceful quiet weeks were now peppered with a barrage of TLAs (Three Letter Acronyms).   We spent hours back and forth on the road to pursue Occupational Therapy (fine motor skills), Physical Therapy (gross motor skills), Speech Therapy (for receptive and expressive language) and intensive assessments (psychological, developmental, genetic, educational, etc.).

Sam and I bore up as best we could.  He took the financial arena and I became an expert in the education of children with autism.  Our home was littered with papers as Sam filled out form after form.  For my part, I wore a path down the hallway and to the door as I welcomed therapists of all kinds through our threshold.  Daily, we kept the house tidy (not an easy feat with two small children) as we expected visits from early interventionists and behavioral therapists.  Together, we were all sucked into this black hole of the shadow of Autism that had overtaken our son and was now intent on consuming us all.

We were exhausted mentally, physically and emotionally.  We were collapsing under the strain when we decided to change our strategy.  We had been fighting a shadow.  We had been trying to rid our son of autism by beating against the wind.  Everything we had been doing was important, but we could not withstand it much longer.  We redefined the game.  All the facts pointed to the reality that autism was pervasive.  It was a part of who our son was and we would not eradicate it.  Even at a young age, it was obvious that Isaac was severely affected.  We made a controversial decision but one that was right for us.  We would continue to do everything in our power to address Isaac's needs, but we would see Isaac's needs for what they were - a piece of the family's needs as a whole.  We would pursue every therapy that we could afford, but we would not work such long hours that we would miss our children's childhood.  We would take respite, and nurture our souls during time spent away from the hysteria of this new world of special needs.  We would love our child.  We would hold him to a high standard.  We would do all that we could, but we would not give up the core of our family to do that.

That decision changed how we lived.  We were no longer bound to try every new and expensive therapy.  We forgave each other and Isaac with more ease.  We were no longer concerned with how to kill the beast of autism.  We wanted to contain it and tame it.  We wanted to learn how autism affected our son and how best to communicate and interact with him.

The journey was and still is difficult.  Isaac has had more hours of therapy than is imaginable.  He has progressed but he still has autism.  He is significantly affected.  We have dealt with more than I care to disclose here but we are still standing together as a family.  We still love each other.  We are still here.  That is to us the most important thing.

Questions You Don't Think You Should Ask: How Did You Know There Was Something Wrong?

This question is relegated to the taboo because it is thought to be too personal, too intrusive, too right out nosy.  Still, this is a valid question and one which I will address.

I was 24 when I had Isaac and he was our first child.  Sam and I are intelligent and loving, but we were young and naive.  No one ever expects anything to be vastly different about their child.  No one expects anything short of the Gerber baby who will one day graduate Yale with honors and become a President or an astronaut or someone who will change the world for good.  I had taken care of myself when I was pregnant, taken prenatal vitamins, etc, etc, etc.  I expected a healthy child.  I had no reason to expect otherwise.

You are never supposed to take a retrospective view of history, but I will break the rule and look back to flag the clues that were unnoticed and unmentioned along the way.  Isaac's cry was different.  It was louder, more commanding, urgent and incessant.  My recovery room was down a far hall and yet I could hear my baby's voice the moment they brought him out of the nursery door.  The cry is not something I can reasonably describe in print.  It was merely different and he was so very difficult to comfort. We assumed (the doctors too) that Isaac suffered from colic as his cry continued through the first days and into the first weeks and even into the sixth month.  He was comforted only by three things:  the swing (when he was old enough), the sling (a baby carrier that cradled him tight against me) and the Spring (when I fed him).

There were issues concerning his feeding.  Periodically, he would forget how to nurse.  I'm not sure how to describe this but on occasion he would look at me as if I were an alien creature when I would try to give him nourishment.  This was more than a nursing strike.  His eyes were confused and angry. He was hungry and had forgotten the way to get food.  We worked through at least two instances where we had to teach him how to eat.

After he was six months old, the crying mostly subsided and a quietness crept in.  He was a happy baby that enjoyed playing with his toys.  He would babble mostly the same redundant syllables "da da da da da" though these were not in any recognition of my husband or of anything for that matter.  Isaac had a toy car that he loved playing with and would spend hours in the floor with it.  The car had a short string attached to its front (remember this was 1998 to 1999 when such things were allowed on toys...oh the dark ages :) ).  Isaac would sit with his car and instead of pulling it or even using the shape sorter windows to make music, he would wrap the string around his thumb and then unwrap it.  Wrap, then unwrap...again and again and again.  At first I thought he needed some help to teach him how to appropriately play with his car.  I interacted and tried to play with him.  My sweet six month old glared at me and grabbed his car.  I tried again and again with the same response.  He was content.  

Here, dear reader, you have spotted red flags.  Remember please that I was 24 and this was my first child.  Remember too that no one wants to think that anything is developmentally different about their child.  Remember and show grace.

Children are my thing.  My talents lie in reading The Very Hungry Caterpillar and Good Night Moon, in singing every rendition of every early childhood tune and in crafting teachable moments out of just about anything.  I am a teacher and I love children.  I am good at it.  I tried with Isaac during those first couple of years.  I stayed home and played on the floor with him until my knees calloused.  Still, he was quietly content.  I told myself that some people are quiet.  Perhaps my son was one of these introspective old souls.  When I took him out, people commented that he was such a good baby.  To this day, I hate that phrase.  When did we mistake quiet for good.  For the first year, I had to think of things to occupy my time because my son was such an "easy" child.  I sewed.  I baked cookies.  I started a cookie ministry to the local hospital.  Every week, we would leave several batches of cookies along with a Bible verse offering comfort to those in the ICU waiting area.  I honestly didn't understand the other mothers who complained that they could not get anything done.  My child demanded comparatively little.  

And then, things began to change.  He began missing developmental milestones.  He didn't care to imitate.  He explored objects differently from most children.  He held the fork to the light and watched the light pass through the prongs.  It was sometimes difficult to get his attention.  He was late to walk. He was less tolerant of change.  He noticed when we crossed from tile to carpet and complained loudly through screaming tantrums.  

Again, dear reader, remember that I am pointing out the red flags of my journey.  You began this piece knowing what you were looking for.  I was enjoying motherhood and assuming the perfection of my child.  By this time, I was pregnant with Isaac's sister.  We wanted to have at least two children and had thought that having them close together made as much sense as anything else.  You're in diapers...You're in diapers.  Remember that you are reading our history and offer only grace and love.

There were many times that Isaac would cuddle and look up at us.  He would giggle and interact.  Autism is pervasive but there are moments especially with young children with autism that appear typical.  Tantrums were easily explained by colic or teething.  Babies cry.  Little ones throw fits.  It was almost perfect...just not quite ... and what wasn't perfect might have been a childhood expression of individualism.  It took a long time to put together the puzzle of what was going on with Isaac.  There is more to written but this is enough for today.  We can pick up again tomorrow.

Questions You Don't Think You Should Ask: Why Don't You Leave?

This question seems much like yesterday's but I swear they are different.  Yesterday's question gets to the point of why we want Isaac to participate in the community.  Today's question is more about how we teach him to deal with the transitions and complexity of life outside of his normal routine.

Many understand that it is Isaac's right as a community member to participate in community life.  Many read yesterday's statements and would never argue the point that Isaac be allowed access to stores, schools, places of worship, etc.  Many understand and are kind if Isaac exhibits happy behaviors.

Understanding is replaced by fear when Isaac becomes unhappy.  Fear can open the floodgates for all sorts of unfortunate behavior.

First, fair disclosure...  Isaac struggles with language.  He has learned to use it, but it is difficult.  Isaac will at times communicate via behavior.  Sometimes, Isaac is tired of being at the store or is bored with his current activity or wishes we would just move on already.   It is difficult for him to politely interject with, "Excuse me Mom.  I would like to move on now.  I would like to leave.  I am not having a particularly pleasant time."  I would think myself hallucinating if he did say that.

Isaac is more likely to communicate by proceeding up a behavioral pyramid which begins with vocal sounds and can end with a full on meltdown.  The meltdown is usually directed at me but is not personal.  It is communication.  He is expressing his frustration with me and his desire to leave his current environment. Sometimes, it is possible to cut things short and leave at the beginning of the behavior pyramid.  Sometimes, though, it is neither practical nor prudent to stop our activity for Isaac's sake.  Sometimes, my sweet mama answer is, "No".

Why do I tell Isaac "No"?  I tell Isaac "no" for the same reasons you express that sentiment to your child.  Isaac is a child and I am his mother.  I am tasked with the responsibility of teaching him how to behave.  Sometimes, the answer is just "No".

Isaac learns behaviorally.  To a large extent, we all do.  We have had to teach Isaac that our "no" stands.  I remember when Isaac and his sister were very young.  Sam and I had to get a new trash can.  Isaac got tired of being at Target and proceeded to throw a massive autism fit.  His sister decided that if Isaac got to cry, she could too.  We told the children, "No thank you.  All done fit."  We weren't mean...just absolute.  We did not yell.  We stated factually.  We then proceeded to discuss which trash can was the one for us while the children wailed.  Oh, the looks we got!   We ignored the onlookers and went about our business.  Eventually, the children realized there was no pay off to their behavior and grew quieter.  Had we scurried away to the car at that moment, Isaac's tantrum (and his sister's) would have been reinforced by a positive outcome.  Had we attempted punishment at that moment, Isaac's behavior (and his sister's) would have been reinforced as he would have caused a change in my behavior.  We addressed his current behavior with words spoken with a flat affect, "No thank you.  I do not like your fit"  and we went about our shopping. There was no pay off for the behavior.  He got nothing out of it and honestly throwing a fit of that magnitude is exhausting for any child.

People around us were uncomfortable.  I understand that.  I regret that.  I do not try to put Isaac in difficult situations as a way to ruin other people's experiences.  It is me that may have to deal with scratches and pinches.  It is my eardrum that is the closest.  I do not try to be obnoxious.  I don't go to the best restaurants with a screaming aggressive child.  Still, I cannot let Isaac's behavior dictate the lives of those in our family.  Isaac is a member of our family and we look to his needs.  He is a member and not the central component.  Isaac has three siblings and two parents.  Our needs must be accounted for too.

Parents are tasked to teach their children about life and how to proceed successfully through it.  We teach our children how to wait and how to respond when we are frustrated or denied what we want.  Isaac does have autism, but he is still a child and also needs to learn these truths.  Sometimes Isaac throws a tantrum.  I don't take it personally.  I don't stop what I'm doing.  We go on.  We manage the best we can.  That's really all we can do.

So what do you do if you hear Isaac's frustrations at Wal Mart?  You can look at me and pose a question with your eyes.  You can ask if I am ok without saying anything and without judging.  I will respond.  Usually, I am ok and don't need assistance.  He is fine...just not quiet.  We will be ok.  If you can offer direct assistance by helping to carry the groceries or open the door, that would be great.  You can realize that this is not the first tantrum that I have seen from Isaac and that I am an expert regarding my son.  Be assured.  Follow my lead.  I have this.  It will be ok.  I will remove him when I can, but I cannot rush my behavior or things have the potential to get much worse.  You can be understanding.  You can offer a smile or even a hug when things have deescalated.  You can say a prayer for Isaac and me.  You can move past your fear and respond in love.  You can love me.  You can love Isaac.

Questions You Don't Think You Should Ask...Why Did You Take Him Here?

I enjoy tackling questions that I see so often in people's eyes.  I honestly wish they would go ahead and ask them and let me respond instead of whisking away in a whir of awkward political correctness.  Without honest sharing, no one will grow and people will continue to nurture fear and stereotypes.

"Why is he here?"

We are a regular family.  We go to Wal-Mart and Food Lion.  We go to church.  We sometimes go to restaurants and have been to Disney World.  Why?  We go out because we enjoy it and we need stuff.  It's kind of a boring answer.  Sometimes we go out when we would rather not.  There have been days when I have been sick and cranky but we need toilet paper.  We go get the toilet paper regardless of mood.  Our mood would be much worse if we went without necessities.  Sometimes when we are out and Isaac is not in a pleasant mood, I catch the question in a whisper I was not intended to hear or in a glance from one person in line to another, "Why do they take him out anyway?"

Isaac's needs have prevented me from responding at that moment.

Sometimes the question is asked in honest concern for my son.  Sometimes the question is poorly phrased and is meant to be, "Why are his parents imposing this stress upon him unnecessarily?"  That does sound better, doesn't it?  Sometimes the question is posed because Isaac's presence is making the questioner uncomfortable.  I do understand that.  We are afraid of what we don't know.  Isaac's behaviors are different and can be frightening.  It is not a sin to be afraid.  It is not a bad thing to be uncomfortable.  The only shameful behavior is a failure to learn from your current situation and stay stymied in prejudice.

Isaac goes into the community because he is part of the community.  He and so many more people with autism (the new CDC numbers cite one in 68) are members of communities, neighborhoods, churches and families.  Isaac is more like you than not.  He has basic needs that must be met.  It sounds simplistic but here is a breakdown.  Isaac goes to the store because we need groceries and we are all out to get them.  Isaac goes to a restaurant because he likes to eat (what teenage boy doesn't?).  Isaac goes to church because he and we need strength and love.  Isaac goes to school and attends classes, lunch in the cafeteria, assemblies and events because he needs to be educated.  Isaac goes to museums and cultural outings because it is important that we expose him to the world around us.  Isaac goes to Disney because he likes to have fun.  Isaac goes to the state parks because he likes to get outside.  You get the picture.

It is good for Isaac to get out.  Isaac has a difficult time with social outings but he still needs them. In fact, Isaac suffers much more when he cannot get out.  The summers are difficult for us because it can be difficult for me during the day to get all of my kiddos out and offer all of them the support they need.  It can be difficult for one grown up to manage Isaac and all of the others.  It is possible but it is difficult.  Summer days stretch lazily on and on and on and Isaac can develop a nasty case of cabin fever.  He wants to get out.  He gets bored.  He lives for the weekend when Sam and I can together get the children out to do and to explore.

It is good for the community to see Isaac too.  The media tries to teach that the community is peopled by skinny models who never get a zit and always dress in the current fashion.  Have you been to Wal Mart?  The community is comprised of people.  People are unique.  People are marvelous.  People are real and come in all shapes and sizes.  They look different, sound different, are different.  A community is made amazing by the uniqueness of those that people it.  It is imperative that the community be exposed to people with different abilities and uniqueness.  You cannot accept what you are unaware of.  You cannot be aware if you are denied knowledge and exposure.  You cannot purge prejudice unless you become aware of the value of others.  That all begins when you see Isaac out at Wal Mart.

I have noticed a change.  More people tend to accept Isaac when we are out.  More people are approaching me and telling me about their loved one who is affected by autism.  That might seem rude but I don't mind it.  These folks are reaching out.  They are grabbing on and embracing us.  They are bringing us in to themselves and into community.

Questions You Don't Think You Should Ask: Why Haven't You Tried This?

People want to help and it frustrates the daylights out of them when they can't.

There is a tendency to see a picture that is off center and to attempt to straighten it.  We want things to be ok.  Maybe its that innate sense of community and preservation and protection.

Ever since it was first discovered that Isaac was not following the typical developmental curve, people have posited their opinions of how we as Isaac's parents should proceed.  We have been asked about diet change, alternative medicine, traditional therapies, educational strategies, vitamin therapies and the pursuit of further diagnosis.

Sam and I do our best to listen...really listen...in love.  We generally have a good ear to the ground when it comes to new information regarding autism.  I am a news nerd by nature so I note any study or article that comes across my NPR or BBC feed.  I will occasionally miss one.  I'm not perfect.  There is a lot that I don't know and honestly can't understand.  My literature minded brain needs hard scientific studies translated a bit before I can fully comprehend them.  New information is good information.

Sharing information is one thing.  We listen.  Sam and I research that information.  We talk about it - extensively.  We may involve Isaac's medical, therapeutic and/or educational team.  We weigh the options.  Our general end all test remains the PITB Factor.  Items that pass the PITB may be tried; those that do not are for the moment at least discarded.  (For those that wonder...PITB is a reference to a Sam and Spring made standard and refers to Pain In The Behind Factor.)

The extent of Isaac's struggles were clear very early.  I remember well teaching him how to use a spoon giving full hand over hand prompts and then fading back to wrist, elbow, etc when he was two and before he was formally diagnosed with autism.  We realized early that we cannot cure our son.  Isaac has autism.  It is pervasive and affects every piece of who he is.  I can't cure him.  I can accept him as my son.  I can celebrate him.  I can love him.  Sometimes, even those things are difficult but they are what I am called to do as Isaac's mama.

Isaac is not at the center of our family.  We are a circle.  We are a team.  No one person's needs come first.  The family bends and flexes to meet the needs that are present in love.

Does that mean that I have given up on my son?  Not on your life!  Does that mean I do not love him? NO!  Does that mean that I will not advocate for him?  Not even close!

I accept Isaac for who he is...autism and all.  I love him.  I have fought tooth and nail for him throughout his life.  I have argued, reasoned, researched, wept over and defended Isaac.  I will never stop advocating for him.

We have evaluated every new thing presented to us and we put it to the PITB test.  Will this new therapy be too much of a pain in the behind?  Will it steal more sanity than it will create?  How much stress will it load upon Isaac and the rest of us and for what actual benefit?  If the benefit outweighs the PITB, we will implement it.  If we fear that he or we will be crushed under the additional weight of the new proposal, we pass it by.  Isaac is more important than that.  Our family structure and preservation is more dear.

Our PITB Factor test has led us down many untrod paths.  We gave Isaac the behavioral hours we could afford and no more.  I have a background in education and so learned the tenants of behaviorism, ABA, and a slew of other educational based practices used for children with autism.  We tend to shape our child rearing strategies around a lot of those premises.  Isaac is involved with speech, physical and occupational therapies.  We are faithful about keeping dental, orthopedic, psychiatric and other general medical and therapeutic appointments.  If new information surfaces that makes sense for Isaac and for our family, we are all over it.

Sometimes, we wander into something by accident that is of more help than anything we could have researched on our own.  We discovered that Isaac could hike.  We further discovered that he liked it.  We all did.  Hiking was perhaps the best accidental discovery we have ever made for Isaac.  He is so visual in his processing that the defined trail and trail markers are perfectly fitted to his world view.  He is outside so no one needs to try to make him be quiet.  If he makes noise, the snakes stay away and I am a happy happy mama.  Isaac loves that he is continually progressing, exploring, seeing new sights.  He has a goal...to get to the end of the trail.  He beams when he is finished.  He is rewarded with accomplishment.  His general response "Yea! We did it!"  Then he looks to me as any teen aged boy would and asks for a snack.

My advice... which may be worthless but it is here...is that it may be helpful to provide new information to families dealing with special needs....if you offer it in love and if you understand that the family has every right not to pursue the therapy or treatment you are suggesting.

Mostly, families love their children more than anyone else ever can.  Mostly, families have a much greater context for their child with special needs than anyone ever will.  It is another thing if you know that inaction will result in real harm to the child.  Be careful with that though.  Not agreeing with you or not sharing your world view is not tantamount to harmful behavior towards a child.  You may not agree with the family's decision.  That's ok.  You have shared and unless you know that the child is coming to real harm without action...sharing and loving and offering your hand to help and to hold is enough.  You don't have to fix it. You can't.  Just love us through.

Questions You Don't Think You Should Ask: Why Did You Get A Son With Autism?

Ouch!  Nobody is supposed to ask that.  But people have...and just that bluntly too.  It's not really that crazy of a question.  As humans, our first instinct when we see anything atypical is to ask "Why?".

The short answer is the scariest one.  Nothing.  I was twenty four when I had Isaac.  So was Sam.  I was and am healthy.  There had been no known instances of autism in either of our families.   I had great prenatal care and took prenatal vitamins (seriously someone asked me once if Isaac had autism because I did not take prenatal vitamins).  Pregnancy, labor, delivery...everything was pretty normal.  Sam and I met in college.  I had just finished graduate school when Isaac was born.  Sam and I are both reasonably intelligent...depending on the day and our caffeine intake.  I did not drink, use caffeine (ok...maybe a little chocolate ;)), or do drugs at any point during my pregnancy.  I nursed Isaac through his first year.  When he did start eating solids, Sam and I made up pureed vegetables and froze them into ice trays.  No processed food for our baby!  Education is my thing and I love early childhood too.  I engaged Isaac in play.  I sang him songs.  I read him books and books and books.  But the fact remains that Isaac has autism and cognitive delay and nice list of a few other diagnosis too.

That's part of what makes autism so scary, isn't it?  By the books, we did everything right.  We were not supposed to have a son with severe special needs.  But life happens and paths change.

Sometimes the most obvious question isn't the right question.  Many people a lot smarter than I am are delving into the issues of what may cause autism.

That's not a question I have time to wrestle with.  It's not my question as Isaac's mom.

My question is this:  What am I going to do with Isaac's autism?

How am I going to let Isaac's personhood shape me?  How am I going to cope day by day and moment by moment with the realities associated with Isaac's autism?

My answer:   I will live with Isaac's autism.   I will let my son shape me as I in turn shape him.  I will cope moment by moment.  I will live fully in each one.  I will celebrate the great moments and live through the challenging ones.  I will try to learn from those moments too...but first I will live through them.  I will seek help from God who made both Isaac and me and from the community that has gathered around us too.  I will live through this moment and then move on to the next.

I do want you to know something.   I, as a mother of a child with special needs, am not stronger or more saintly or more or less deserving of a child with special needs than anyone else is.  My only real qualification to be a parent of a child with special needs is that I am a parent of a child with special needs.  Autism hits everybody and is not shown to have much of a nationalistic, educational or socio-economic bias.  It is in many ways a great equalizer.  Isaac has autism and I am his mama.  That's it.

Parenting Isaac has taught me that I am stronger than I ever would dared to have hoped.  Isaac's autism continually sheds light on my greatness and my weakness.

How did I get Isaac?  Why does Isaac have autism?  I don't know.  My ignorance doesn't change anything.  I will try to help him and love him and encourage others along the way.

I leave you with beautiful words from Winnie the Pooh.  These words are gifts to me and you today...no matter what we have to face.  "You are braver than you believe, stronger than you seem, and smarter than you think"...A.A. Milne

Love You Sweet Friends...

Questions You Don't Think You Should Ask: Why Did We Have More Children

I like having this blog.  I like knowing that somewhere out there someone is reading my thoughts and letting me add my voice to thier own private understanding of special needs.

The irony in which we live is that we are free to express our ideas but are bound by a culture of silence made by the fear of political incorrectness.  There are questions I see in the eyes of those who meet us or hear our story. A precious few actually ask.  Many more quash their curiousity with Southern manners.  This post though is not intended to deride manners.  As a Southern mama of four, I hold manners in highest regard.  But manners are not meant to quash...they are meant to guide and offer genteel strategies for navigating the social jungle.

The point of all that:  Honest questions when asked in love are welcomed questions.

One question we have gotten over the years.  Why do you have four children?

My answer as to why we chose to give Isaac siblings centers around community.  We were already pregnant with my oldest daughter when we heard the first whisperings that Isaac's development might not be progressing typically.  I remember that first mention.  It was on my due date for my second child.  I had consciously filled the day with errands refusing to succumb to the notion that any child would be so punctual as to come on his or her directed day.  The due date was only a guess anyway.  Best to keep busy.  I had made Isaac's well visit appointment that day.  He was eighteen months old.  The doctor made routine inquiries and raised an audible eyebrow when I reported that Isaac was not yet speaking words.  He suggested there might be a problem and wanted to know if I would like to explore that further.  I suggested that I was approximately 40 weeks pregnant and that now might not be the best time.

He stammered off an answer.  About a week later, I had my little girl.  She arrived in the middle of the night and was absolutely beautiful.  My labor (without pain meds) had been hard but had been worth it. She had arrived and we were celebrating.  The children's doctor came to examine my new little one bright and early after the eventful night.  One of his first questions was whether I had thought anymore about Isaac's speech and development.  No... I hadn't nor did I want to after a night in which I had labored and completed a natural delivery of my beautiful 9 pound daughter.  GRRRRRR....

ANYWAY....

Time passed.  We took a few months to welcome our new baby and get accustomed to being a family of four.  I still don't regret it.  When our new little one was six months old and Isaac was two we began the journey that led us to discover Isaac's diagnosis.

More time passed.  We withstood the onslaught of therapies and professionals and evaluations.  We were doing everything we could for Isaac.  We watched his sister crawling through the hallway.  We thought of her need.  She would need community.  We were here but this little girl would need someone with unique understanding of what it is like to have a brother with autism.  She needed someone nearer her own age.  She needed another sibling.  So we had another child and then another.

Were there risks?  Yes, but there are when you have any child.  There had been no previous diagnosis of autism on either side of our family before we had Isaac.  Were we nervous?  Yes, but fear cannot be allowed to stop your life.  Were we vigilant?  Oh yes!  We watched our sweet ones and celebrated loudly when they made milestones others might miss.

 All of the children are richer for the experience of growing up together.  Isaac is too.  There is nothing like having to share a household to force lessons of waiting and transition.  We are a team.  The children love and lean on each other.  None is more important than the other.  The family flexes as different needs arise.  We love each of them and dote on them without favorites.  They are ours.  We are community and we help each other.

Please understand that I have given you the gift of my honest answer to an honest question.  The answer though is mine.  Other families choose different paths for different resons.  I can only give you my answer but I offer it anyway to shine a little bit of light on what may otherwise be an unaskable question.

Love you Sweet Friends!