Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

Thursday, April 3, 2014

World Autism Day



This story is one about ignorance. My own.

 
 Several years ago, something bad happened to my family, and I started pulling away from the church. The pastor, bless him, tried to stop the outward ebb of the Griffis family by organizing a motorcycle trip to Iowa. He drafted me as a driver in the break-down van to trail behind several of my dearest friends straddling hogs and Hondas as they roared down hundreds of miles of country roads. He thought it would be healing.

After bad weather, engine trouble, messed up hotel reservations and the awkwardness of dear people trying to pretend that all was right in the world, we headed back home. 


I don’t know what road we were on, and I don’t know what state we were in, but I was in the passenger seat with the pastor’s wife behind the wheel, watching our little biker gang take a huge, blind curve. Suddenly, there were rhinoceroses standing at the bend in the road. Even as my mind was registering that these life-sized beasts were made of stone, I jumped, the pastor’s wife startled, and the motorcycle directly in front of us, the one ridden by my friend Angie, swerved and lost control. We screamed and yelled frantic prayers to God as we watched Angie and her bike skid, drag and flip end over end at the side of the road.

I tell you all this as an excuse for my next behavior, even as I know that there really is no excuse.

Due to God’s protection, Angie was banged up, but otherwise healthy. We were all shaken to the core and decided to get off the road as soon as possible to recover. Golden arches appeared after a few miles and, by unspoken agreement, we all pulled off and walked in the restaurant to order.

I was last in line. The girl behind the counter was a pretty teenager with an unsmiling face. I watched and listened as she took my friends' orders in a cold, unfriendly manner without making eye contact. With each order, I felt rage building inside me.  She was so rude! I was physically trembling, and my thoughts became loud, angry and unorganized. My pastor was directly in front of me. I could see that he was already defensive when he placed his order, but he remained in control. The girl became surly at a request he made and refused to place his order until he changed it. My pastor, a man who was trying to help me at the worst time of my life, looked upset and confused… and that was it. 

Everything in me - the hurt, the fear, the rage - boiled over and that poor girl took the brunt of it all. I told her exactly what I thought of her, her rudeness, her arrogance, her teenaged snottiness. I made her cry. The other staff members gathered around her while trying to placate me. I demanded her manager. A tired-looking older woman approached me with caution, and I let her have it too. Did she care so little about customer service that she would let this insolent jerk behind a register? Why wasn’t this horrible girl in back with the deep fryers? Why didn’t she receive better training? Why wasn’t she disciplined? Why wasn’t she fired?!
 
The manager endured my barrage of furious questions with lines of exhaustion on her face, and said, “I’m sorry, I’m sorry, I’m sorry…” over and over again. When my rant was finished, she simply said, “We hire people with disabilities. She has autism.”

The rage was gone, replaced by a soul-deep tiredness. I was raised hearing my dad say, “There’s rarely a reason not to be nice. Show the world kindness.” I thought, ‘Wow. The first time I ever lose my temper in public, and it’s at a young girl with autism.’ Why didn’t I listen to my dad? And why, after working several months in the disability field, didn’t I notice the signs of disability?

It was because, while I recognized the possible speech impediments, disjointed conversations, slack jaws, protruding tongues, flat features and wondering, wandering eyes of some people with intellectual disabilities, I knew next to nothing about autism.


I don’t remember much else from that point onward. Just shame and embarrassment… and a determination that I would learn all I could about autism so, even in extreme circumstances, I could handle the disability with patience, love and control.

Over time, through reading books, magazines and blogs, and through the invaluable experience of getting to know and love the people of Shepherds, I learned about autism.

I learned that not all people with autism are socially disengaged – but some are.

I learned that some people with autism have bright, active minds while others struggle with remedial tasks.

I learned that some people with autism have sensory issues that cause them great stress – and some don’t.

I learned that all people with autism are somewhere on a “spectrum” because they all have different levels of functioning and differing abilities, much as we all do.

I learned that people with autism need support and understanding, not impatience, criticism and judgment.

In honor of this special day, I want to give you something - something that could change your life and the lives of those around you, something I wish I had all those years ago at that counter in McDonalds – knowledge.

Please learn all about autism this World Autism Day and National Autism Awareness Month.



Autism Research Institute - http://www.autism.com

Autism Now - http://autismnow.org



Top 25 Autism Spectrum Blogs - http://www.babble.com/baby/top-25-autism-spectrum-blogs/top-25-autism-blog-full-list

The Best Books on Autism - http://www.goodreads.com/list/show/15047.Best_Books_for_Autism 

Autism Parenting Magazine - http://www.autismparentingmagazine.com

Autism Asperger's Digest - http://autismdigest.com 

Autism Spectrum Quarterly - http://www.asquarterly.com/ 

Shepherds College - Guiding Your Transition to Appropriate Independence. Please visit us at www.shepherdscollege.edu.

Wednesday, May 1, 2013

Enablex, Miralax, Dulcolax, Levit…um...Viag…, Oh My!



Thank you to Cathy Harvey, Administrative Assistant to Shepherds College for writing today's blog.
 

Bet the title got your attention, didn’t it?  It is from a great book I read recently called Autism, The Invisible Cord: A Sibling’s Diary by Barbara Cain (2013, Magination Press). I picked it up at the library simply by perusing the shelves as I walked throughout on a hunt for arts and crafts books. (Read on for how the title relates!)

Since I began working here in 2009, I appreciate even more than before some of the excellent portrayals and stories of people with disabilities in books and movies. I used to relate to them from a distance, but now I do so with more personal interest and ability to apply what I learn from them.  I grew up with an aunt who had Cerebral Palsy and a daughter with undiagnosed Asperger’s, but their lives were our norm, so I never considered them in a way others probably perceived them—with a disability.  It is probably why statistics show 53% of parents are in denial about their children’s disability because a mother’s love does not see her child as anything but a beautiful tug at her heart.  Of course I did know my aunt and daughter had a disability (though my daughter’s was a mystery for years), but life traveled on as usual and we adapted to whatever they needed.  It wasn’t until I interviewed here and was asked if I knew people with disabilities that I thought of them more clearly as such. My first thought was that I didn’t know anyone which is why it surprised me that God led me here.  Then, like a light bulb moment, I realized I had grown up around it, so it was a natural part of life’s flow.

But back to the book-- The Invisible Cord: A Sibling’s Diary is a tender rendition of life from 14-year old Jenny’s perspective, of her school and family dynamic and what life with her younger autistic brother brings to her.  His name is Ezra, an atypical 6th grader whom she loves and defends passionately, wondering if she will ever be able to cut the invisible cord that binds her to him to explore her own dreams one day.  As she rises to occasions to defend him and gain a little revenge with his worst bully (a girl), she spearheads a story about bullying in her writers club to bring awareness to the school and her community.

He has his patterns and amusing routines, like regularly reciting a string of commercials, “Enablex, Miralax, Dulcolax, Levitra, Viagra!” in the most inopportune times that can make her want to disappear, or that keeps her laughing with his pure innocence.

She finds comfort in writing to her diary which she names “Dee,” sorting out her feelings about boys, friends, school, the principal, Ezra, and the dynamics of family members who love and accept him unconditionally, and those who never make peace about his permanent condition.

It a simple read, but so touching in the way Cain spins the tale, develops the character of Jenny, and draws the reader in to her home and school life.  It’s real (even though it’s fiction) and has a great ending which I will not give away!  I hope you will check out this Silver Medal Winner, 2013 Mom's Choice Awards book.  The back of the book includes tips for self-advocacy for siblings of children with autism.  It a great Sunday afternoon read, and I plan to read it again before returning it to the library.

Shepherds College - Guiding Your Transition to Appropriate Independence. Please visit us at www.shepherdscollege.edu.

Thursday, November 29, 2012

A Parent's Heart



Thank you to Shelly Kumfer for writing today's blog.

From the desk of a grateful heart:

November 27, 2012 was the anniversary of my salvation day.  I was thirty five years old when I fell on my knees and committed my life to God through Jesus Christ.  I came to salvation because of my desperate need for help with Charles, my only son.   I received salvation as a result of God’s grace upon me following the dark, lonely journey that lasted two and a half years of my life - the testing and diagnosis process of Charles and his ultimate diagnosis of autism.  It was on this day in 1997 when I was told after all the neurological tests and parenting interventions I humbly sat through, and what seemed like endless psychological tests and language therapy sessions on Charles, that someone had the courage to offer a diagnosis to us. Believe it or not, after all that we’d been through, it came as such a relief, a direction to go in, a path to take.  I invited God on the journey on that day and it’s been an incredible one, a journey I wouldn’t trade for anything now.  I have learned so much and continue to learn through my child.  He was never really my child, but a child of God’s. I happen to have the privilege of being his mom.  

One great benefit from all I went through is that I learned through parenting classes that any unacceptable behavior was unacceptable.  I used that as a gauge for my parenting boundaries.  If Charles misbehaved, there were consequences.  I really trusted the 1,2,3 Magic method of behavior modification and it paid off.  To this day people tell me how polite and well mannered Charles is to be around.  Of course, as his parent, I have questioned “are we talking about the same kid?”  I do believe it now as evidenced by what I personally experienced this past Thanksgiving weekend at Shepherds College to be true.  Charles was nice to his Mom! 

Back to the story…

Up until I was born again, I was left to wonder what I must’ve done to cause this.  It had to be something in my past that caused Charles to have this “problem”.  Quite possibly it was my parenting (or lack of) that was causing these issues to appear in Charles.  I can recall feeling so down and insecure about my parenting skills even though I had done everything “by the book”… every book that is except the Bible.  I was so convinced that surely there was something I had done to cause his delays and deficiencies.  It had to be what I did in my life that caused Charles to have these issues, and surely I must be able to correct his issues myself if I just do something “more”.  For example, get him in more activities, host more play groups, give him more social opportunities, expose him to more culture.  Believe me, if there was something I could think of to help my kid, I tried it.  I can recall the TV program Murphy Brown.  Well, I am not a TV person and I doubt I’ve seen more than one full episode of that show, but I’ve been told I was a real life Murphy Brown.  I worked as a business professional from home, and I had Nanny’s hang out with Charles while I worked full time.  I would do all kinds of arranging of activities for him, and everything was always amazing and way over the top.  You see, I felt Charles was my gift from the start and I wanted to treat him as such.  I was so thrilled to finally have my own child.  He was wanted more dearly to me than I can possibly tell you and from the moment I knew I was pregnant, I delighted in the hope of my child being healthy and cute.  Charles is all that!  He was beautiful and healthy, a true Gerber baby, even today, just bigger.  Always beautiful and sweet.  My dreams for Charles were huge.  I wanted him to attend private schools and thought Cranbrook in Michigan would be a wonderful place for him to thrive.  I thought about all the wonderful things he would do and achieve with the right opportunities in life and all that I would do for him to achieve his best.  I had it all mapped out. 

My dreams, my plans were dashed.  You see, these were all my plans not God’s plan. 

Charles was born in Manchester, New Hampshire and we lived a very happy normal life for the most part except for his forever absent biological Dad.  That’s an entire story in itself, but suffice to say that I had full responsibility of Charles from the moment he was born – he was all mine to care for, make decisions about, and love pretty much on my own.  We moved to Michigan in 1995 to be near family, which was wonderful for me as I was born in Detroit and my family was in the area.  My oldest sister was my best friend and lived nearby. She was always a constant help and encourager to Charles and me until her passing in 2000.  I am one of nine children, and there is no other person within our family that has any “special needs”.   Most of them rejected us which was evidenced in so many ways, but most of all by the lack of effort shown by them to engage, to invite Charles over to their homes despite the countless occasions we had “cousin overnights” at our house.  It was my impression that they really didn’t know how or want to have much to do with someone who was different.  Charles had many quirky habits like eating ketchup on everything except fruit, and he ate the same things all the time, and loved movies and video games.  I am not really sure of how they felt, but I think Charles was more than they could handle. I often heard them say “it’s all the ketchup he eats or he plays too many video games”.  It was pretty hard not to believe that it wasn’t me that caused Charles’ problems. Needless to say with a large family, I had at minimum a dozen opinions at that early stage of Charles’ diagnosis - all of which I am sure were well meaning, but didn’t really help much.  I have found that people are willing to offer opinions, but never really willing or able to act on them.  I felt alone in my journey, but looking back I can see God’s hand in all of it.  

I had no reference back then to autism because it wasn’t as widely diagnosed and therefore whatever information I could gather was of my own research and attending Seminars, etc.  There have been key people I believe The Lord placed in our path that were directly God sent. This early research took place in the late 90’s, long before the internet is what it is today for information access.  I did my best to educate myself on the subject of autism so that I could assist others in their understanding, not of autism but of Charles.  I really wasn’t interested in becoming an expert in autism.  I just wanted to reach my kid.  When I committed my life to God on that day we received the diagnosis, I believe it brought me direction.  A framework in which to begin a new journey.  Quite frankly, a relief to the darkness of the unknown.  What I can see now is that direction was straight into the arms of God. The plan of salvation is better than any I could’ve dreamed up.  I got on my knees that evening, humbled myself and said “God, I need your help.  Please forgive me for all that I’ve done (He knew it all. He was right there with me while I was yet a sinner).  Help me with my child, I’ll do anything for you, just please help me with my child.”  I’ve never prayed a more sincere prayer, I don’t think.  That was the beginning of the real journey of my life.  My life with Christ.  A redemption story.  When all seemed lost - my dreams, my hope, my joy -  God proved Himself faithful to His word.  He has cleansed me (still a work in progress) of all unrighteousness, has made beauty from ashes and has shown me that the only true hope and dreams are found strictly in Him.  That my sin wasn’t the reason why Charles is the way he is, it’s because God wanted to use Charles to bring Himself Glory.  It was such a burden lifted to have that realization.  God gets all the Glory.  He has revealed His faithfulness toward me through Charles and my experiences as a believer.  He is constant in His love toward us and has consistently shown me that His plan is for our good, to prosper us and not harm us, to give us a hope and a future.  I have come to believe that plan and future has included Charles and myself before time began.  That he was fearfully and wonderfully made in my womb and what the devil meant for evil, God turned it around for good.  I am so grateful and blown away that He is mindful of me, of Charles. His outstretched arm is over us and His banner is love.  


We live in northern Michigan and I married a wonderful Godly man in 2005 who has been a Dad to Charles and a husband to me.  I like to say (most reverently) that God is my cupcake, and Bruce (my husband) is the sprinkles.  He’s been so wonderfully supportive and loving to us both.  He is a RN by profession and has been a great resource to me and a particularly Godly influence on Charles. I believe Bruce loves us with his life.

I have often thought that people like Charles are extra special to God.  It seems to me Charles and those like him are included in the ones the Lord said “let the little children come unto to me and do not hinder them”.  I believe that God uses Charles and people like him to test hearts.  I have witnessed this over and over again how people respond to those that are “different”.  I have felt that way when I meet people at Shepherd’s.  My responses are very thoughtful because each person at Shepherd’s is an amazing gift.  I am blown away at the students I’ve met there.  God’s plan for our children is a good plan as evidenced by what I witnessed at Shepherd’s College this past weekend during the 2012 Thanksgiving break.  I have such hope today through the fruit of joy, peace and goodness Charles demonstrated toward his family while visiting him.  I am amazed he knows harder scripture verses than I do, he’s lost 30 pounds, (I’d like to go on the Shepherd’s diet, please) and his overall demeanor is magnificent!   I cried tears of joy for the entire eight hour journey home.

Obviously, God is using Charles to impact my life. God has used him to bring me to Salvation and continues to strengthen and reassure me that we can do all things through Christ who strengthens us and that with God all things are possible.  I have come to know that we walk by faith not by sight and it’s okay to trust The Shepherd as He is The Good Shepherd.  I had no idea that Shepherd’s College would be used to blow my doors off with Charles.  Letting go of my gift and trusting God and Shepherd’s College with him was a huge test of my faith.  God gave him to me 20 years ago, and I believed I was doing the right thing by walking in faith and trusting God would keep him safe so far away.  The time had come for me to let my baby bird fly and it was time to let God allow him to rise up on wings like eagles and soar.  The decision through much prayer and wise counsel was to send Charles to Shepherd’s College.  Charles did not want to go away from home.  I had peace about it or it never would’ve happened.  But, God has begun a good work and I am so hopeful He will see it through to completion for Charles at Shepherd’s College.  1st Semester appears to be a big praise to God academically and, ever so importantly for a person with autism, socially he’s making progress.  Yeah, God!! Yeah, Charles! Yeah, Shepherd’s! 


I can’t describe fully the incredible transformation that God is doing in Charles during his first four months at Shepherd’s.  Charles left home a somewhat depressed, sad kid with little confidence that he could do anything.  A gloomy cloud in his spirit and full of doubt as so many young people are today.  I am so pleased with the safe environment for growth at Shepherd’s. I witnessed the fruit in my kid this past weekend.  Charles told me at Thanksgiving dinner that he’s happier now than when he left home.  It melted my heart to hear such tender joy and assurance from my son.  He told me that he is glad we made the tough decision to send him to Shepherd’s College.  It’s all I needed to hear.  To know I had chosen well.  I chose well when I heard God call me those 15 years ago now.  I marvel at the journey of my life and feel grateful that I’ve been given such hope for my son.  My heart is blessed with joy that my child is happy and thriving. 


I hope that each parent, loved one and family member will experience the same joy I felt when I heard my child say he is happy.  I hope that each of us will savor our dear Savior’s birth with a twinkling of hope and wonder of how great God really is!  That when our children arrive home for Christmas break, we can love them the way God loves us, graciously and gladly.   There’s no greater feeling - hope.  I am overwhelmed with gratitude for what God is already doing in Charles.  Halleluiah, highest praise to God.  Glory in the Highest for His faithfulness toward those that love and trust Him.  He is good.  I could go on and on. 

Thank you Shepherd’s College for the hope that you’ve provided this grateful mom.  I am expecting His best for Charles!  You’ve been an instrument to deliver huge blessings to me and most of all to Charles.  Thank you from the bottom of my heart.

Shelly Kumfer 

Shepherds College - Guiding Your Transition to Appropriate Independence. Please visit us at www.shepherdscollege.edu.