Dr McGuinness

Tomorrow we are going to a party to wish our pediatrician "happy trails" as he heads off on a slightly new career.  He is turning his heart and skills toward being a hospitalist and leaving a very long career as a pediatrician.  He was the twins' doctor for five years which by physician standards isn't terribly long, many families see their pediatricians until adolescence, but I'm here to share with you it's not the length in time.... but rather the miles that we put on that poor, poor doctor!

When I had received the prenatal diagnosis that one of the twins would probably have Down syndrome, I set my mind to research and learn everything there was on the syndrome.  The diagnosis.  When we received another possible diagnosis that Tommy would have Dandy Walker malformation of the brain, I set out again to learn everything there was on that.  To study the diagnosis.  When our OBgyn asked "who" we wanted as a pediatrician, my jaw dropped, I had no idea.  I hadn't researched a pediatrician.  I only studies diseases, syndromes, malformations.... but had no idea about local skilled pediatricians.  I learned then that my baby would be a baby first and not defined by a diagnosis.  And as the delivery of the babies was quickened by a few weeks our OBgyn mentioned that since we were undecided on pediatricians, we could "take our chances" on whomever was on call that night and "see if you click" and want to chose him/her as our doctor.

After the twins were delivered and we were nestled back in our hospital room loving baby boys, we welcomed our family and friends to share the day with us.  And the "pediatrician on call" stopped by to meet the sweet nuggets of babies.

When Dr. McGuinness walked in he didn't really seem like a doctor at all to me.  He seemed more like an uncle that you saw year at Thanksgiving.....kinda ordinary, tall, not really "manicured" like other docs I knew, very friendly, and most notably humble.  Extremely humble.  I thought he wasn't really a doctor.  Until he started talking.  And I realized he was one really, really smart, kinda ordinary, tall, friendly, humble.... Pedatrician.

The moment engrained in my memory is that of Dr McGuinness asking to hold Tommy.  While he was less than an hour old and with one hand under Tommy's neck cradling his lil floppy head and the other hand under his bum, so he could hold Tommy's face directly across from his own and admire him...... the doctor edged himself onto the corner of my hospital bed and then up and completely onto it and kinda sitting right next to me in the bed while admiring with outstretched hands a sweet little eskimo bundled Tommy.

And he said to me in a calm and reassuring "doctor type" voice, "... he is perfect, congratulations...".  And I smiled.  And cried.  Simultaneously.  And of course said yes a million times.  And when I finished that good long ugly cry that only happens post partum (and a few times sprinkled thru each year, when you are a mom to a child with special needs, just so you don't get bored) our eyes met and Dr McGuinness continued "and I'm pretty sure he indeed does have Down syndrome ...... and we will want a genetic test to confirm".  And that was the last time I can remember getting such significant news in such a caring and loving way.

The short story is that we chose him for our pediatrician.  But never got the opportunity to stay in Bellingham that day as we were whisked to Seattle Children's and lived there.  For way too long.  But brought back a much, much healthier Tommy.  And a sweet Liam who spent much of his infancy cradled in my arms in hospital rooms and lobbies and on walks on the Birke Gilman Trail.

And we spent five years seeing our pediatrician and learning that he was indeed very, very smart.  He had diagnosed Tommy with Hirschsprung's disease, Down syndrome and eventually would play a major role in a diagnosis of moderate immune deficiency (Polysaccaride antibody deficiency), and eventually low platlet counts.... not only because as a physician he had a scientific skill set but also because he cared and he listened and he asked questions.  He treated Tommy as a person and us as a family.

Dr McGuinness saw Tommy many times over the five years when things were not looking really good.  It seemed a few times, long after the peds clinic had closed, Dr McGuinness and I would be standing in front of Tommy's glowing xrays on a hallway monitor and he would be explaining again why it looked like pneumonia and how to be admitted to the hospital ... or why it looked like it wasn't.

To say that the man could talk, is an understatement.  Dr. McGuinness imparted knowledge to us as parents with every breath.  And often times there was well over an hour, or two, in an appointment.  For a Christmas gift one year I asked him if he preferred wine or beer and he said "beer, definately beer, because my wife likes wine and it will be gone".

He showed me how to put in a g-tube *almost* with just one hand.  Which would come in handy a few times especially pulled over on a shoulder of I-5. We asked him to sign more paperwork then probably all of his other patients combined, FMLA, insurance appeals, grant applications for medical items, prescription changes, stacks of paper.

He taught me to want to know more.  And in fact, to want to know everything.  And to teach others what I learned.   And to care for families as a whole, not just the child with special healthcare needs.  Family support was taught to me early.   Once when the immunologist told me that Tommy couldn't attend public school nor could he attend sunday school, both because of his immunity, I told Dr McGuinness I wanted to give Tommy a "normal" childhood and the restrictions would cause him more consequences then the possible germs.  Our Pediatrician understood and said we could try school and try church... and six years later the support in our supported decision still rings in my heart.

He taught me to ask every question, because he showed me that he would make the time.  His pediatric history is still at Children's as every single person who cared for Tommy during five years there, knew not only where Bellingham was, but also who Dr. McGuinness was and they would smile when they said he was the best!

Much love to you friend and I hope as a hospitalist you see Tommy and I far less! 

Trusting process (video at the very end)

A traditional American Indian prayer seems such a simple way of reminding ourselves to let go and trust in a process larger than us as individuals, "May we be helped to do here whatever is most right."

I'm finishing a few books right now and one of my new favorites of all times is now "Kitchen Table Wisdom"  by Dr. Rachel Remen. 

Although I have practiced christianity my entire life, it is only in the most recent years that I can say praying has brought me the most quiet and holy of moments.  Times when my fear and joy are held in the most taught equilibrium and I feel the entire world has fell silent.  I pray when thankful.  I pray for people.  I pray for knowledge and discernment.  

"Each person is born with an unencumbered spot, free of expectation and regret, free of ambition and embarrassment, free of fear and worry, an umbilical spot of grace where we were each first touched by God.  It is this spot of grace that issues peace.  Psychologists call this spot the Psyche, Theologists call it the Soul, Jung calls it The Seat of the Unconscious, Hindu masters call it the Atman, Buddhists call it the Dharma, Rilke calls it Inwardness, Sufis call it Qualb, and Jesus calls it The Center of our Love.
To know this spot of inwardness is to know who we are, not by surface markers of identity, not by where we work or what we wear or how we like to be addressed but by feeling our place in relation to the Infinite and by inhabiting it.  This is a hard lifelong taks, for the nature of becoming is a constant filiming over of where we begin while the nature of being is a constant erosion of what is not essential.   We each live in the midst of this ongoing tension, rowing tarnished or covered over only to be worn back to that incorruptible spot of grace at our core".  -Mark Nepo

When I am troubled by difficult decisions, fearful about how my choices will effect the future, worried or anxious... I try to rub the tarnish off my core of grace.  And I am reminded that I love unconditionally.  That I trust in processes.  I can see and I can value everyones perspective and input and help.

In "Kitchen Table Wisdom" she reminds that simply trusting process has a great power.  An example is given of a mother present at the birth of her grandchild.  When her daughter is calling out for her help and in great pain of childbirth, the soon to be grandmother is reminded that all she can do is hold her daughter's hand.  Your experience is impotent as a mother in moments where you can only trust in process.  You simply must trust that the process of childbirth will reach resolve.  Without trusting in the process, all of our actions are driven by fear.  Fear is the friction in all transitions.  Having been in conversations with our local school about supports to Tommy for his education, I have been reminded to trust in the process.  Simply hold my son's hand, talk to the people in my path and be present in those conversations with the discernment needed. 

At a recent open AA meeting, I accompanied my daughter a recovering alcoholic, and listened to a very gifted speaker who talked about humility.  He spoke of the ability to visualize humility in ourselves as being the "eye of the hurricane".  Even though we have pieces or are part of the swirling world around us, we need to center our hearts as the quiet in the center of the hurricane.  Because in the end, if we really involve ourselves too much in the process, too much in trying to influence others... we become prideful, anxious and fearful.  If we visualize ourselves as the center of a storm, we can more easily allow others the dignity in their pieces of processes and their own success.  Which creates the most powerful form of grace.

As with my own daughter and her road to recovery and addressing mental health concerns, I can listen.  Listening is powerful.  Showing your attention and caring is a source of healing to someone.  Sometimes, often (ha ha), I don't get a single word in when she wants to talk.  And I remind her, and sometimes others that I meet as new parents to childrens with disabilities or just people that I meet in everyday life, if they want to talk to me there is probably nothing that they can tell me that would surprise me or make me feel (more or) less of them.  There isn't a life experience that they couldn't share with me, no fear that I couldn't somehow understand, no pain or suffering that I wouldn't remember somewhere in my own lifetime.  I am human too.  So filled with mistakes and feelings and thoughts...we have so much in common with each other.  It is so important for us as community to connect with each other.  The human experience is so much more fulfilling when we actually listen to each other and meet one another in a place of humility.

After meetings to further some supports for Tommy's kindergarten education, I put together my first "video". That's in quotes because you will soon see I had no idea how to edit a video.  But, it's a collection of his kindy photos for the first three months of his education.  Of course he had two and a half years of early intervention preschool.  But this is kindergarten.  It's big stuff.  He has a wonderful team of highly skilled educators.  An amazing paraeducator, the Tommy whisperer.  A life skills teacher that is genuine and cares about Tommy, and has a total of 17 kids under his teaching.  A skilled SLP that is piecing three modes of communication together for him.  An OT that is designing a more specialized program for his sensory diet, and it will benefit more than just his little self.  And an administration that is listening to our needs.  We are trusting the process.  And grateful to God that has gifted our family such a wide smiling, toe headed, hurricane of a human being.

Six years ago

Six years ago today I asked the labor and delivery nurse to wake my husband up, I was ready to deliver the twins.  There was deep snow outside the windows of the Bellingham Labor and Delivery room.

I asked her for two tylenols and within minutes was ready to push Baby A, Thomas William McMillan, into our OB's hands.  Six pounds and thirteen ounces of sweet baby!

Twelve minutes (.... long .... minutes...), the ultrasound on my belly showed Baby B had not turned head down.  And without missing a beat, the second OB calmly told me to take a deep breath, and she reached to find two feet and delivered Liam Scot McMillan, our footling breach.  Seven pounds and one ounce.

Sorry for the details, but one person out there I'm sure likes a good labor and delivery story. 

Names in our family mean alot.  Hannah and Nathan are both old family names on the Schlagel side of my ancestry.  Hannah's middle name is her grandma Ilene's.  Nathan's middle name is his father Michael's name.  Thomas was one of my favorite cousins growing up and his middle name is my father's name.  Liam is the last four letters of my father's name and his middle name is Colin's middle name (and yes it's Scot with one two, old school scottish).  Three names are Hebrew, Hannah (Grace of God), Nathan (Gift of God), and Thomas (the Twin).

The twins were born on the 12th month, 12th day and 12 minutes apart.  Which today is even more wonderful thinking it's 12/12/12 for their 6th birthday!  Tommy's teacher shared that it won't happen again for 100 years, what a neat date today is.

Liam stayed on oxygen support most of the first day.  I really missed not being able to hold him but that rush into the world didn't help his lungs deflate and then inflate the way they should have.  Thomas was layed on my chest and after many attempts to breastfeed he was seen to be failing by Colin in various ways.  And even with a prenatal possible diagnosis of Down syndrome.... little did we know the rest of the story.  That his heart had two large holes.  That he had Hirschsprung's disease.  That the rest of the year would be spent restling with do not resusitate and quality of life.  Thank God to our miracles!  Including how the twins have changed us as a family, for the better. 

Happy Birthday Tommy and Liam.  Oh my you both have been treasures!

Patience, attitude, the half-brother to Jesus, and Woods coffee

A few trials have come my way.  Such is life, right? 

Every single person reading this has been faced with trials.  Some big, some small, some life changing and life ending, some with new beginnings....each invoking their own pain, their own joy and a certain attitude that over comes us as humans. 

I'm here to tell you, I'm a wife.  A mother.  A sister, a daughter, a friend.  I'm an employee.  A farmer.  A Jesus loving believer.  And with all of those roles, comes a few issues of late.

Our pastor, who we have enjoyed for 10 years, who has preached at our church for approximately 28 years, was dismissed because the membership of our church wanted a new pastor to grow the church and take in a new direction (as I understand the issue).  I was confused, angry at the decision, sad for my own loss in a great teacher and anxious for what this change means to my faith.

My daughter, a freshman in college and a recovering alcoholic, continues to work a great program in recovery but her mental health struggles are now larger and more evident without the self medication of alcohol.  I am sad that she has such a struggle with co-occuring disorders, and worried for her future.  Beyond anything, I want the best for each of my four kids and strive everyday to be the mother they need, and at times I feel an absolute without a doubt failure at that task. 

My son, a kindergartener with symptoms and habits and behaviors from multiple developmental delays, struggles to be a kindergartener, struggles to be ready to learn and how the teachers plan for his access to an education continues to seem noncoordinated.  I am frustrated at what seems to be an unordinate amount of time, not just from me but also all the teaching staff, in coordinating services and people and care within systems that I thought and had dreamt were suppose to be coordinated already.  I'm disappointed that systems are just as imperfect as me as a human being.  It's really confusing and non sensical at times.

My oldest son is preparing college applications to University of California schools.  I cannot even adequately share how much his absence in my daily life will change my positive and fun loving attitude, he and I share a very mellow outlook on the human experience, often keeping each other in check, I sincerely enjoy parenting him and all that we talk about and learn from each other. 

The farm has taken much time this year to prepare for winter.  New drainage systems in the pastures to allow for standing water to drain quicker has taken much efforts by my sweet husband to dig, and redig, to design and redesign... and redig, ugh.  Lots of money thrown toward drains. 

Our marriage has taken a back burner to the struggles of late, and that is never what I or my husband intend to have occur.  We celebrated our 10 year anniversary and we both feel.... "we need a redo on that celebration".   We love to talk and dream and conspire but let's face it with life it's harder to fit in the "planning" portion of a marriage.

A friend died.  A dear sweet beautiful and wonderful mom of a four year old boy.  A colleague, a coworker, a friend to drink coffee and catch up with.  Someone that is still a follower of our family blog even though she is following from heaven now.

My parents are getting older.  Funny concept huh?  And my mom is scheduled for knee surgery which is much needed after many years of pain.  But the thought of my parents, who gave me such an ideal and sheltered childhood, aging... getting older... is pressing on me lately.  It makes me more concerned.  Makes me ask them if they need help preparing the house for winter. 

Somehow, I allowed the recent trials to consume me.  To have all of my thoughts channeled just to issues at hand.  I lost my view, myperspective.... and for a sheet moment I lost the belief in my faith. 

So, I checked myself into Woods coffee on a Sunday evening.  Kicked the miscellaneous teenagers that were lounging on the couch near the fireplace off after I overheard they had been there since 3pm (it was after 6pm).  I curled up on the giant couch with a carmel machiotto coffee and my bible.  Turned to the chapter of James (which was written by Jesus' half brother, and may have been one of the first books of the new testament.  Interesting facts!)  It was the last sermon that I listened to my pastor preach.  It was one of those profound experiences that you sit in your church and feel, this is all for me!  So much so, that I wanted to read the book of James in full (which is only five chapters), and thinking about the application to my life was where a cup of coffee always helps!

"..count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing."  James 1:2-4

I thought I knew patience before our twins were born.  I thought I knew patience before collaborating with education.  I *think* I know patience now.  Well, the fact is, by testing my faith, it continually teaches me patience.

"But be doers of the word, and not hearers only deceiving yourselves. For if anyone is a hearer of the word and not a doer, he is like a man observing his natural face in a mirror;  for he observes himself, goes away, and immediately forgets what kind of man he was. But he who looks into the perfect law of liberty and continues in it, and is not a forgetful hearer but a doer of the work, this one will be blessed in what he does."  James 1:22-25

I am always concerned that I don't share my belief systems with other people ("hey look I'm a Christian"), but rather that I try to be Christ like, as C.S. Lewis in "The Great Divorce" "There have been some who were so occupied in spreading Christianity, they never gave a thought to Christ".  Maybe, by showing others compassion and grace they will feel loved.  Calling yourself a Christian does nothing without the actions.

Recently I read an article on Taoists philosopher, Yun Xiang Tseng, theory "Game of Life". In this "game", there are several players, "the victim", "the persecutor", "the hero".  According to Tseng, each of us plays each of these roles throughout our daily life.  He warns however, that sometimes these roles are not what they appear. When you are a hero, you are sometimes a victim. When you are a victim are you seeking to prosecute? When you are a prosecutor do you believe you are a hero?  The secret he says, is to enjoy the position you are playing, but when the day is done, remove your mask, and separate yourself from your role. This he says, is the key to happiness. To the Taoist philosophers, emotions are like decorations in the living room. It is important to notice and explore them; but when you are done it is more important to place them back upon the shelf where they belong.

My attitude had gotten in the way of me processing thru the recent trials.
"Do not grumble against one another....as an example of suffering and patience...we count them blessed who endure. You have heard of the perseverance of Job and seen the end intended by the Lord—that the Lord is very compassionate and merciful."

Over the past year I have learned that grace can be found in the moments of the day that I allow others the dignity of working thru their own decisions, on their own path of struggles, and not being the solution but a resource to their success. Grace is sometimes a verb which is defined by a characteristic of honoring someone else with respect and allowing them their achievements thru being their own hero.  Solving their own problems.  And in that my attitude has changed. 

I reread "The Pastoral Practicality of Law-Gospel Theology" Tullian Tchividjian (who is Billy Graham's grandson, long story) who says "If we really love people and want to see them truly set free, we have to get out of God's way and let the crushing work happen so that the gospel can do it's curing work".  I've seen far too many people 'rescued'  by parents and family members which has actually ruined their lives because their fall has been cushioned by people that "love" them- robbing that person from ever experiencing true deliverance because they never experienced true desperation.  "God's office is at the END of our rope" because grace always runs downhill-meeting us at the bottom and not the top.

I have a vision for this next month.  To set my sights on a goal of being humble, loving and patient, wise, intelligent, genuine and sincere and celebrating opportunities to be a resource to people, but to keep my perspective that it's God's plan and He is control and I'm thankful that these are all trials to count as joys to my life, even in death... I can celebrate her friendship.  The human experience is profound.

Scouting for sanity

We are settled into school routines, Hannah at the University (her dorm and roommate are so cute), Nate full time at Running Start, and the twins as active little kindergarteners.  Go ahead and laugh about the difference between helping my oldest two on college level math and then helping my littles on coloring "only THREE ladybugs" on the page.  I know you are laughing with me, right?

All the after school activities are in full gear.  One of the sweetest activities is the Awana church program that Liam attends at a neighboring church.  It's only his second year but already he is accomplishing tasks within their program.  Earning "badges" for his Awana vest.  Patches that show his accomplishments.  Colorful and bright and slightly coveted by him.  Badges that are symbols of his skills and his knowledge.

So I got to thinking....
What would it be like if "parenting children with special needs" had a scout program? Brimming full of badges.  And we wore some type of silly sashes or vests with all of our colorful patches on it?  Our skills and knowledge would be sitting ontop our puffy little chests with pride.  Goofy huh?

Maybe the "scouting for special needs" badges would include a beautiful red heart shaped badge because so often as parents we wear our hearts on our sleeves, get a lil emotional at times, convey our thoughts with the most passion and belief possible.   After all, some of us have watched our children almost die.  A few times.  And a few people reading this have lost their child.

There would be hands on activities in our "scouting for special needs".  Similar to how I image boy scouts have "how to build a fire" on their week long campout.  Ours though would include a hands on lesson for how to change a five year old boy's poppy diaper.  While he decides that all 42 pounds of himself needs to be in the next room.  At the exact moment that you remove his diaper.  And he runs.

Or for some friends it would be cleaning a trach on their child that has. the. most. amazing. defensive. moves.  Like karate kid on fire while you are trying to clean it.

Or maybe for another child's parents it would be a hands on activity like oxygen tank wrangling.  I'm sure a badge with a cute rodeo illustration of a mom wrangling an oxygen tank up the front house stairs and over a few toys would be great.

And let's not forget the "replace the feeding tube, in the dark, alongside I5, while a state trooper tries to 'help' you" activity.  That poor trooper was a wee bit traumatized, thought I would get the 'first responder' badge after she nearly passed out.

We could even have a week long "scouting for special needs" camp.  Which of course would take place in a hospital.  80 miles away from your family and friends.  Fairly isolated.  With just your sweet struggling ill child, yourself, a half couch to "sleep" on, and your hair looks so greasy for many of those days, you resemble yourself back in middle school.  The camp would take place during the week of Christmas.  Maybe a cheery colored badge with a tree on it?

Maybe we could have a fee structure for our "scouting for special needs" program that is so complicated it involves insurance companies, personal excel worksheets to track explanations of benefits, nonsense limits on activities that are much needed, waitlists to get into activities and use your entire savings.  A few times over. This badge might have a dollar sign and a telephone on it.  Because on the phone about insurance or care coordination will happen, often, in this program.

I'm not sure if boy/girl scouts has a foreign language badge, but I'm here to tell you "scouting for special needs" would have one.  And the test for your understanding of that foreign language would happen on day one.  With no textbooks to read and memorize the definitions of the words.  Only your presence at grand rounds, sleep deprived, when your child has been admitted, and everything is verbal and the doctors think you understand.  It is all latin.  Or greek.  It's the "medical" foreign language. 

And of course you wouldn't receive your "scouting for special needs" badges unless you enjoyed a lot of humor.  Sometimes fairly dark humor like in this post.  Sometimes a lot lighter though and very fun.  Best when your husband pranks your child's physician, as he is about to discharge your sweet baby and has come to your hospital room only to check for bloating and distended tummy (which is totally flat and our bags are literally already in the car after three weeks of being inpatient), your sweet hubby stuffs something under your child's gown so his tummy looks realistically bloated.  And your doctor laughs so hard when he figures out is a joke.  And five years later sees you in a lobby at Children's and asks where your crazy husband is.  And laughs again.  Just keep it real.  And fun.  Because we know and have seen, life is fragile and oh so very short.

Humor is best also when shared with friends and family and thru some amazing support groups like Whatcom Center for Early Learning playgroups, Parent to Parent support meetings, Arc of Whatcom County and Down syndrome outreach events.  Support in getting to know other parents.  And realize it's totally okay to use your humor and laugh about the most painful experiences. 

In the end of "scouting for special needs" the program would graduate you. 

But it is you that has gotten so much more from parenting a child with special needs.

More character.

Patience.

Compassion that makes you ache.

Enjoyment of every single moment.

A need for large volumes of coffee.

An ability to be present, in the moment, in a split second.

Laughter.

An ability to cry like you have never seen a person cry before.

Honesty.  And it bears repeating, honesty with yourself and to others.

Forgiveness. Period.   

Love for your family that is so intense.

An absolute faith.  That is so freeing. 

A unique ability to fall asleep, when given a pillow and a blanket. Or one or the other. Anywhere.

Profound Joy

That you want to share your child with the world.



Motherhood is not a competition

Today is my birthday

I'm 44 years old. 

And I'm kinda feeling it this year (big grin)

I've been employed in the best job in the world

motherhood, for almost 19 years

And you would think that by now

 I would understand that my own experience as a mom is unique.

My children are each unique. 

Four beautifully and perfectly made kids. 

Each with their own strengths and weaknesses.

And yet, from time to time, in the small free moments of the day

I cannot help but begin to compare myself to others

Or I start to think about why can't my child be just a little more "x", like hers?

Or why can't I be less anxious, like she is always so calm

Or maybe if I went to the gym more, I'd have more energy like her

And I forget

That motherhood is not a competition or a series of comparisons

It's a unique experience

One that I never thought would turn out like it has

Never. Thought.

And for all the times that I started to compare myself or my kids to someone else

I now realize are little lost moments

So I'm thinking for the next 44 years, by the grace of God

motherhood will be absolutely savored

for whatever it is

the joy, the grief, the friendships with other moms, the parenting of my four

because it's all mine

and I need all those little moments.

Why Tommy should be in your classroom

"Take the first step in faith.  You don't have to see the whole staircase.  Just take the first step." 
Dr. Martin Luther King, Jr.

Edited 10/8/12 for how it will appear in P2P newsletter
Tommy and Liam started their Kindergarten education with a two hour “orientation” this September. This was provided by the three kindergarten teachers at our local elementary school. Each classroom was divided into half, with a morning orientation for half the students with their families, and an afternoon orientation for the other half of the students and their families.  Liam loved meeting his teacher, classmates and seeing his Kindergarten room which he would be in the next day. Tommy really enjoyed seeing the other kids and wanted to explore the room, touch everything and everyone, and walk the hallways.  Although they are twins, they are as different as day is to night. Both with their own beauty, both perfectly made, and both needed as a student in Kindergarten. I cannot say what the other parents at orientation were whispering or why they wanted to stare at Tommy. Maybe it’s because he is fairly loud at times. Maybe it’s their first time seeing a person with Down syndrome. I didn’t have time to ask them. But it felt as though I would be embarking on a journey where I had no handbook. Only the knowledge that Tommy is an individual. An energetic five year old boy. A brother, a son, a friend to most that he meets. A child that has a keen emotional intelligence, a boy that loves to play basketball. If those parents wondered “why” Tommy was there for orientation, maybe I would share with them these thoughts.

Today’s student body isn’t “typical or normal”. 2 out of 10 children have a mental health disorder. 1 out of 6 children have a developmental disability. 1 in 110 children have autism. 6 million children have food allergies, some
of them life threatening. Diagnosis is becoming more sensitive given modern science and services or therapies for those children more important. It’s harder to see a classroom of students without some of those students having special needs. Often invisible special needs. Our family shares an interest with all the other parents in the classroom to figure out how inclusion works. How Tommy can join the other students and learn and play and access his education. Inclusion isn’t impossible, it just takes teamwork. A sense of community needs to exist within the school and that classroom for inclusion to work. Parents and teaching staff all work together for inclusion to work.

If you are not focused on a classroom to include EVERYone then you are still practicing segregation.  History shows segregation based on gender, race, faith, disability.... only further marginalizes.   Societies that marginalize people, could also hate them.  "if he were in our classroom he would disrupt the lesson and ruin it for 26 students".  "he wouldn't be comfortable".  If you are a person who professes to be against bullying at school, but think that not allowing students from the Life Skills room into the general ed classroom is okay, you are condoning that SOME people are different and they don't belong.  That is a form of bullying.  It simply needs to be overcome at a very early time.... let's say Kindergarten.  Where kids can get a strong sense of EVERYones value and include each person in the day of fun and lessons. 

When done correctly, inclusion is great for every student and teacher and support staff. It’s a giant school and family community that celebrates strengths and works to even out the differences thru support. Children bring all kinds of gifts to this world. Different levels of intelligence, learning styles,
behaviors... and when working as one, it works. It will take parent volunteer hours and special hearts of teachers and support staff to make inclusion possible.

“ The IDEA (Individuals with Disabilities Education Act) was originally enacted by Congress in 1975 to ensure that children with disabilities have the opportunity to receive a free appropriate public education, just like other children. The law has been revised many times over the years. The most recent amendments were passed by Congress in December 2004, with final regulations published in August 2006 (Part B for school-aged children) and in September 2011 (Part C, for babies and toddlers). So, in one sense, the law is very new, even as it has a long, detailed, and powerful history. It’s a great law! Complicated, to be sure, but well worth understanding and implementing."  NICHCY - National Dissemination Center for Children

Most importantly, the IDEA is about making a community, a society, accessible to everyone. If a child has a peanut allergy, you are legally required to make his school safe. If a child has a behavior issue, you are legally required to create a safe environment. And as a parent I will volunteer and help in the classroom and with the staff as much as possible to make
this work. And in the process, friendships amongst children will be formed so that someday we won’t notice differences.

Maybe awareness of people who experience developmental delays needs to occur more in Kindergarten. Maybe starting at orientation. Maybe by a parent to other parents. Inform yourself, like I did, through some amazing girlfriends and research and then inform others. Tommy needs to be in your classroom!

Tommy is starting to learn the routines in his Life Skills classroom.  This classroom will provide differentiated instruction, mostly I believe thru discreet trial trainings and a specific curriculum.  Which will meet him where he is engaged and learning.  Then he will spend time, hopefully soon, with general ed Kindergarten for music, pe, recess, lunch.  And I can help the other parents understand why Tommy needs to be in the Kindergarten classroom.  Inclusion, do it, as much as you can. 

Liam is LOVING his Kindergarten experience, so many new friends and ideas.