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.

Let's Fix This- IEP Edition

Wow!  That last post was a doozie!  It seems to have been well received so I think I will continue to share some more IEP insights.  I come at this from a unique perspective.  I am a mama of typical children as well as a mama of a special needs child.  I am an educator and I am a parent.  I see the table from a lot of different perspectives and I try to be fair.  I will never advocate for the impossible.  You won't see me push for dolphin therapy for Isaac.  I know that no one goes into education for the exorbitant salaries or the world wide fame and glory (I giggle just writing that sentence).  We all start our journeys to the IEP table because we have loved a child.

So what the heck happened?

How did this group of people who have dedicated their lives to the service and love of children and knowledge come to sit around a table glaring at each other as adversaries instead of as team mates working together for the benefit of the child.

How did we lose perspective?

We lost sight of each other.  The emotion that pervades the atmosphere around the sterile conference room descended like a fog and clouded our vision.  We as parents lost sight of you the educator who are buried under paperwork and deadlines and budgets.  You are no longer Mrs., Miss or Mr.  You are no longer teacher, administrator, therapist or psychologist.  You are that entity that is denying our child what we believe will help him.  Our parental eyes are clouded by the instinctual protection of our young.  Instinct erases reason and elicits knee jerk reactions.  There is a moment when every parent believes that you as educators have the ability to make our child better.  We want a miracle and we forget that you are human servants just like us.

I have seen educators lose vision around the IEP table as well.  The professionals around the table are proud of the work that they have done for our child.  As the discussion progresses, I have seen educators become threatened and defensive.  The professionals lose sight of their student as this person's child.   Educators have dedicated years of their lives and mounds of money to their pursuit of knowledge as to how best to teach children.  As I have questioned educational practices as relates to my son, I have seen educators flare up in defense of their qualifications, professionalism, and personhood.  How dare I as a parent question established practice?  How dare I question them?

It does not take an expert in relational counseling to know that in those moments of anger, defensiveness and instinct, the child who should be at the center of the discussion is forgotten.

How do we fix it?

-Let's all remember to be grown ups.  Our child is counting on our ability to collectively move past first grade squabbles and work something out to their benefit.  The best bit of advise I was ever given regarding IEPs was to litter the IEP table with adorable pictures of my son and heavy helpings of chocolate.  It may sound silly, but we need to remember that the meeting is about a child and we should keep it sweet.

-We need to concentrate more on the relationship and less on one meeting.   My plea to administrators is to work on building a relationship with the families of the special needs students they serve.  Remember that our children cannot communicate much if any of what is going on at school.  If at all possible, let us meet the teacher before our child's first day of school.  Schedule an open house for the parents of the special needs students well before Labor Day.   Take a lesson from kindergarten.  Our children may be older but are in many ways as dependent and we as parents are just as protective.  The administration, therapists, staff to include nurse, psychologist, guidance counselor and other professionals who will interact with our child should be present.  Welcome the parents and their children at the open house.  Have food!  Display your best artwork!  Offer resources for them to use at home.  Be glad they are there and willing to participate in the education of their child.  These parents are not hurdles in your endeavors to educate but rather are resources to be received with gratitude.  They are the experts in the children you will serve and if treated with respect and camaraderie will be your greatest assets.

-Parents, remember your child's teacher and aids throughout the year.  Remember the administrators and staff.  Look for the good and compliment when you see good things.  Schedule those compliments if necessary!  Put it on your calendar once a week to share a compliment - an honest one- with your child's educational team.  I have never seen anyone go into education to advance their own grandeur.  They sincerely want to help your child accomplish and grow.  Encourage that.  Encourage them.  Become part of the school environment and culture to better foster the relationship that will help your child achieve his potential.

-Administrators, special needs students are essential and should never be pushed away as an afterthought.  The pressure to preform under the scrutiny of tests and standards is mind blowing.  It is easy to forget that hallway that pretty well runs itself anyway.  Taking the extra effort to include your special needs students into the day to day activities of the school will breathe humanity into your entire student population.  Your school will come to understand that as people we all have special needs.  You will facilitate an educational community who looks to help and care for those around them and will themselves achieve greater goals.  Inclusion of the entire student population will establish you as an advocate of children.  You will be regarded as someone who understands and respects the value and potential of all children.  By opening your door, your mind and your heart, you will build open relationships and so avoid the catastrophes of IEP meetings gone horribly wrong.

-Everybody, Breathe.  Relationships take time.  Give each other grace and forgive our collective human screw ups.  Ask forgiveness when warranted.  Assure each other of your devotion to the child and to the process.  Respect.  Love. Remember.

What I Wish You Knew...IEP Edition

Sam and I have attended countless IEPs.  An IEP for those of you blessed not to know is an Individual Educational Program and Isaac (as well as any other child with a qualifying disability under federal IDEA law) is entitled to one.  Without getting into the vat of Alphabet Soup that is Special Needs legislation, I want to pay some homage to the students, parents and professionals who are during these final months of school preparing themselves for this at least confusing and potentially hellish process.

So yeah, disclaimer, I have been to several nasty IEPs.  I have actually been to a few good ones.  Over the course of 13 years (think about that for just a second), I have made an in depth personal study of the IEP process as it relates to my son, my family and my sanity.  There are characteristics of good IEPs and of rotten ones.  As the season begins, I offer this blog....What I Wish You Knew...IEP Edition.

I wish you knew that...

1.  I stood in front of my closet for two hours choosing this outfit.  I have to bring my A game and image goes right along with that.  I debated painstakingly about the exact right combination of sweet, smart and kick butt.  I got ready as a knight prepares to face a dragon.  I hope the encounter will end in the dragon and I sharing tea over a picnic spread but I am prepared with my game face if the situation becomes one of curt negotiation.

2.  I do not share the same cognitive, language and social limitations as my son.  I am intelligent and professional.  Actually, I have studied education specifically for more than a decade, am a certified educator, have a graduate degree and am pursuing another.  I need for you to understand that I am not merely a placeholder in this room but am a viable and essential component of this team which will help shape my son's future.  Please speak to me like a grown up.  Respect my ideas and contributions.

3.  I am personally involved.  You may genuinely care about my son.  I pray you do.  That care will make you do your best for him and keep pushing you and him to greater achievement.  My stake in this is so much greater than yours will ever be.  I labored with this child.  I taught him to use a spoon.  I have been with him through unspeakable behaviors and hard times.  I am right now responsible for him 24/7.  He will be with you for a while but then and always he is mine.  For his sake, I push you to explore all options, to consider all sides, to change your plans in ways that will better serve him even if it makes you work harder.  I may disagree with you.  That's ok.  My differing opinion comes from the fuller knowledge of my child and our family dynamic.  I may not think your plan is viable.  That does not make me a poor parent.

4.  It still hurts.  I need to professionally hear the facts of my son's educational journey with you but the realities of the testing data still hurt.  I will try not to show it.  I will discuss it in depth professionally but when I am alone I will grieve.  What do you do with that knowledge?  I don't want your sympathy and to placate is to malign so please don't.  Please don't tell me you understand.  You don't.  Please don't compare your situation to mine.  Even if you are a special needs parent, you aren't the parent of my special needs child.  You do not understand.  You can't.  You can watch your words. Words are so important and set the tone for the meeting and for our relationship.  Refer to my child by his name and never by his diagnosis.  PLEASE PLEASE PLEASE do NOT use the word "autistic".  His name is Isaac.  Give me the facts and relate them to his current levels of functioning and his proposed goals.  Do it professionally and rely on me to fully process them later.

5.  I am so frustrated with this whole system.  A child's education cannot possibly be worked out via a succession of politically correct, legally stipulated, high stakes board meetings.  It's ridiculous.  I see in your eyes that you know that too.  I don't have horns and you don't either.  I know that.  I'm a teacher too. Education is about relationship.  We team.  We work together for the benefit of this child.  We cannot be afraid of each other.  We cannot fight with each other.  We cannot play games.  The clock is ticking.  My child started so very far behind that we have no time to waste.  I need to be involved throughout.  Communicate with me.  Allow me to visit and help and observe and participate in the same way that a parent of a typical child is encouraged to.  I swear I am not looking for a reason to sue you.  Trust me when I say that raising my child takes enough of my time and energy.

I understand and am grateful for the legal stipulations that bind the special needs educational practice.  My kid is tough and years ago would not have been allowed an education.  I know the reason for the law.  Honestly, the law exists to protect where there is no relationship.

This blog post is tough and potentially confrontational. It isn't meant to be.  I struggled to share this.  My words can be taken in a poor light.  Still, this is a place where I can offer my voice and maybe make some change.  This is a chance to share with you openly and honestly a different perspective.  If you have never seen an IEP from the land beyond the looking glass, you cannot know my perspective nor appreciate my apprehension.  It's about perspective.  It's about relationship.  It's about my child.  It's about Isaac.

This is a good place to stop for now.  There is more to write.  It's exhausting to be this honest with you sweet friends...but it is necessary.  I share my world to open your eyes so that you may understand the perspective of the parent at the table.  I share so that you may communicate wisely and with discretion.  I share so that you may begin to build relationships which will strengthen the education of the child which is at the center of it all.  

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!

Things I Choose

Yesterday was one of those days.  Nothing atrocious happened.  It was just a bunch of small stuff but enough small stuff stacked together can lead to an overall difficult day.  I had one.

After I had comforted myself as best I could with British television (I'm a nerd) and shed a few therapeutic tears, I managed to get a little sleep.

I woke early to a crazy Monday morning.  Isaac's sister had a field trip and had to get to school early. I had a nasty headache which was the only gift I had received from my self indulgent pity party the night before.

So now...the scene is set.  I have an auspicious decision before me.  I have a choice and the power to determine the quality of how this day and possibly this week will shape up for me, my sweet husband and my four children in this one instant.

I could... give into the pain in my skull and the panic of the morning.  I could yell at the kids and be short with my husband.  I could let the darkness of my mood seep into the room and infect my family.  I could poison their day and be repayed by their tears and watch them retreat into themselves as they attempt to avoid my gripes.  

That would be easy.  I just give in to what I'm feeling.

But there are repercussions even beyond the obvious.

Isaac has emotive echolalia.  Those are the big fancy words meaning he reflects back the emotions presented to him.  If I approach the morning as I may instinctively want to, I will be repayed not only by tears and sullenness from my typical children but also with an array of aggressive and difficult behaviors from Isaac.

Not the way to go...

I choose....to take responsibility for my own mood.  My Monday morning issues are my own and do not belong to my family.  I will not make them suffer for my ill spirits.

I choose...to warn.  I do tell my kiddos that I have a headache and let them know that this may not be the morning to speak Ewok or sing loud good morning songs (those activities having been popular around here lately).  I watch my words and my tone as I warn.  I'm not giving this information to be mean but rather just so they know.  Children should not be responsible for reading the minds of the adults around them.

I choose...to get to work.  My work is nurturing.  My calling is caring for these children that are mine. I hug my littles.  I wish my daughter well on her field trip.  I thank her for feeding the dogs.  I help my husband and I help my little ones as they prepare for their day.

I choose...to smile.  It isn't fake.  It isn't huge but it's a smile.
I choose...my tone.  My voice is light and encouraging as I help to wash Isaac's face and brush his teeth.
I choose..to look past my mood and towards their need.

and

I am rewarded.  The littles get on the bus happily after snuggling into a last goodbye hug.  Isaac and I blow dandelion seeds across the driveway as he talks about Easter presents.  The two of us together identify clover flowers and pluck two of them.  He holds them and then gives them to his bus driver and her assistant.  Her face lights up at my son's simple gift and his smile.  Her eyes shine and I can tell that she was affected by my son's gift of love.

Her day is brighter because of my choices.

I cannot choose what is given to me....but I choose my response...for Isaac.

Love you all!