The two greatest influences in my life: Roy and Ethilen Compton

Life with Roy and Ethilen Compton

     I have tried to explain "living with autism" the best way I can.  There really is no explanation I could give you, simply because autism presents itself in so many different ways.  As stated before, I am an honest person and when I write this blog, it is only for the benefit of others.  I show no mercy when it comes to bigotry, hate, bias, or racism.  Autism doesn't choose a family or person.  I have witnessed Alzheimer's disease on a daily basis and this illness can resemble autism in some ways.  My granddaddy, Roy Compton, had Alzheimer's disease and passed away at the age of 86 from this horrible illness.  I named Cole after him (his middle name is Roy), so you could say Cole is like him in so many ways.  As I reminisce about my granddaddy, who was the GREATEST MAN to influence my life (no dig to you daddy!), he was a loving, kind, giving, and Godly man.  Granddaddy Roy didn't see color, race, or hate.  He gave so much to me and my brother that the only right thing to do was to give back to my granddaddy when he was sick.  My granddaddy hung the moon.  I secretly wished I could have lived with my maternal grandparents, Ethilen and Roy Compton, simply because they gave us so much!  My mom (these are her parents) told them one day, "If you keep giving them so much, how will Shawn and Erika know a value from a dollar?"  We were their only grand kids, so they literally spoiled us.  That being said, we always respected them, because of the time they gave us.  I could dig a hole and fill it back up with dirt, simply because I was taught the value of hard work.  Nanny and Granddaddy taught us to respect all people, work hard, and you will reap what God gives you:  eternal life, which is the best gift.  We went to the same church, they attended all of our extra-curricular activities, let us hang out with them at our farm in Lake Tawokoni, vacationed every summer to Galveston, TX, and even took us on a two week vacation every year with my parents!  I could go on and on about my grandparents, as they were the greatest people I ever knew, but you get the idea about my love for Nanny and Granddaddy.  That is why it is so hard for me to write this next entry:  living with Alzheimer's and Autism.

     Cole was diagnosed at the age of six with autism.  My granddaddy was diagnosed with Alzheimer's at age 85.  A person could not be diagnosed officially with Alzheimer's until they died.  We knew something was not right with my granddaddy when he told us one day, "Who is that woman?".  That woman was his wife of nearly 54 years, Ethilen Compton.  Granddaddy had bad hearing, so at first we thought it was a joke.  Unfortunately, it wasn't a joke.  My mom took my granddaddy to see his doctor (who was a phenomenal doctor), and he unofficially diagnosed him as having beginning stages of Alzheimer's.  I was devastated, simply because I didn't know what was going to happen next.  My granddaddy lasted a year with this terrible illness, and it is one illness I do not wish upon anybody.  

     The reason I am comparing Alzheimer's to Autism is simply because I have lived with both of these illnesses.  Nanny Comp (this is what we called her) didn't want to put Granddaddy in a nursing home, simply because she thought she could take care of him.  This was not the case.  Granddaddy's Alzheimer's hit fast and hard.  Within three months of his "diagnosis", he turned into a person I did not know.  He was a very loving and giving man, but Alzheimer's turned him into a person I didn't know.  He knew me and my mom, but as far as other family members, he would get frustrated and cry.  I would sing to him and that would calm him down, when he would have one of his fits.  I never knew my singing would be a comfort to him, but we both cherished these moments.  Little did I know, ten years after his death, I would be singing "Amazing Grace" at my grandmother's bedside in the same nursing home.  She went to be with The Lord ten years after her husband's death.  To this day, I am forever grateful for the friendships we made at C.C. Young Memorial Nursing home.  There were so many special people (and some not so special) that came into our lives who helped us with Granddaddy, when he suffered with Alzheimer's.  I was devastated when my Granddaddy died, but was so relieved to know he wouldn't be suffering with Alzheimer's anymore.  Roy Compton was the man who loved me until the day he died.  His unconditional love and support of me and my family lives on through his amazing grandson, Cole Roy.

     You are probably wondering, "Why in the world am I comparing Alzheimer's to Autism?".  I visited my Granddaddy everyday (even before he had Alzheimer's), so he was a big part of my life.  I always believed his illness taught me compassion and understanding for what life had in store for me:  raising a child with autism.  Cole is not violent, but he can have your typical meltdown of a two year old!  Try explaining to the average person out in public, why your 5'7", 200 pound, 12 year old son is having a meltdown.  The one thing I learned from illness is that you face it head on, without taking crap from anybody-- including family members.  Autism is a mystery that I just can't figure out.  My son is brilliant, just like his granddaddy Roy was, but his brain is wired differently than most.  He can tell you in German "Ich Liebe Dich" (I love you), but if you ask him to tie his shoes, you are going to lose!  The way the brain works is fascinating!  Cole can become very frustrated with me, simply because he doesn't want to transition into the next chore or task I want him to do.  Cole's daddy (my awesome and amazing husband!) takes the approach of "tickle monster".  This game has turned into a normal routine in our house, simply because Cole loves the tickle monster!  When I need Cole to take a shower, the tickle monster can appear at a moment's notice.  You are thinking by now (just assuming) what in the world does a tickle monster have to do with routines?  One day, Cole came out with "tickle monster" instead of cookie monster.  This set off a huge laugh from me, my husband, and Cole!  We took after Cole and started tickling him under his chin and under his arms.  This game has paid off tremendously, to say the least.  He asks for the tickle monster and before you know it, the tickle monster appears!  In all honesty, I don't know how my husband comes up with these ideas, but he does.  This is why I love my husband to infinity, simply because he knows what Cole needs.  He is a wonderful father and husband and I seriously don't know what I did to deserve such an incredible man in my life.  I credit my granddaddy for giving me the outlook to look for a man like him-- funny, witty, cute, a great smile, but most of all, the trait of unconditional love.

     I am attending an autism conference tomorrow, so hopefully I can help you out with some new information!  I write this post today, in honor of my Granddaddy Roy Compton.  He would have been 106 years old today.  He was, and always will be, my hero.  I love and miss you Granddaddy!

True Friendship and autism

Friends

     Alright, I am the first to admit that making friends comes easy for me.  However, having a kid who has autism puts me into a category of "unknowns".  I don't have autism, so why punish me for my quirky ways?  Sometimes, there are just people who think I am weird, simply because I act weird.  Acting weird and being weird are two different things, in my book.  Weird is just a word that simply defines WHO I AM, which is fine by me.  However, don't call me stupid simply because I am weird.  The reason I am addressing "weird and stupid" together is because of one person who verbally attacked me and my son.  You can call me weird, but DON'T CALL ME STUPID.  

     As mentioned in a previous blog, I touched on my car wreck that I had in 1997.  I truly believe this car wreck helped me see who I really was and who my true friends were.  I am now 40 and can count on one hand who my true friends are.  I don't call my car accident a curse; I simply call it one of life's wake up calls.  We live in a cynical world, and the hate and ignorance that accompanies people's behaviors towards a person with autism or a disability simply sucks.  I can reflect upon my life and say, "Well done.  I did great with what God gave me".  I don't think many people can say that they are happy with their lives.  I thank God EVERY DAY that I have the life that I have, simply because you never know what each day brings.  

     Cole has autism and always will.  I don't try to "fix" him, simply because he doesn't need to be fixed.  I love my son, simply because he loves me.  Cole  has a lot of friends now, but unfortunately there is still that stigma that accompanies autism.  For instance, we have a house full of kids over weekly, but he has never been asked over for a play date by any of his friends.  I now realize that Cole is different, but does that make me different too?  Cole loves all of his friends, but as I witness life through a microscope, it hurts me to know that Cole has never once been asked over by another friend to just "hang out".  Why does this hurt me?  Cole doesn't seem to realize he hasn't been asked over to a friend's house that doesn't have autism.  There have been only two families that have made gestures to us to let Cole come over (without me) since starting first grade.  That being said, those two families are our very best friends.  I think the stigma that comes with a disability (autism, cerebral palsy, down syndrome, etc.), is one of just not wanting to learn what makes this person the way they are.  Today, as I write this post, my son was invited to a birthday party, but not to sleepover like the other boys.  Does this hurt me?  I think it could hurt some, but the realization is just this:  Cole may never be able to sleepover at anyone's house, just because of my fears.  Cole is a great sleeper, but overall, I just don't think I am comfortable with Cole leaving our house and waking up, wondering where he is.  As a kid, I know I didn't like sleepovers (my mom would receive a call in the middle of the night that I saw a ghost and she needed to come and get me).  I think the fear of leaving my home and waking up not knowing where I was made me think I saw a ghost.  As I got older (like fifth grade), I loved sleepovers!  That being said, I have always been kind of a homebody.  However, it would have been nice to have known my son was welcome to spend the night at just one friend's house without the bias.  For that, it does make me sad.

     Autism is a something that is a mystery, that I can't even unravel!  Cole has progressed so much, but so many challenges are still there.  Until we can explain to others that autism is not something that can just be cured over night, there needs to be more tolerance and understanding.  I think there could eventually be a cure-- whatever that may be-- for autism, but until that day, I would appreciate tolerance and understanding towards my son.  There are so many kids that don't have autism who need love. 

     I don't mean to rant on in this post, but what I have noticed with so many people is that understanding, compassion, and love is all you need in life.  I have seen some pretty messed up kids who have turned their life around, simply because they were given unconditional love.  Kids need parents to be there for them-- they don't need a best friend or an absentee parent.  I really get put out with parents and caregivers who try to be their child's best friend.  I am my son's best friend, but he knows who is boss in our relationship:  MOM.  Cole can get mad at me all he wants to, but he is the kid and I am the adult.  I have witnessed in just this week a lot of disrespect towards me, but also a lot of love.  What I just don't seem to understand is why treat me with disrespect when I have done nothing to deserve hate?  I love my son-- everyone knows that.  However, don't treat me like you treat your parents.  Kids are kids.  Adults need to act like parents and grow up.  Parent your kids-- you will be glad you did.  I want Cole to grow up and become a fine, young man like my husband.  I don't envision our world full of hate or distrust, simply because you don't parent or show love to your kid.  Children don't ask to be born into this world.  People make choices to have children (adoption is a GREAT thing!).  That being said, if you don't want to love your kid or give them the discipline they need from you, then you shouldn't be a parent.  Being a parent is the most rewarding but hardest job I have ever had.  I love being Cole's mom.  I know God chose me to be his mom.  Other parents, wake up before it's too late.  

     Being a parent and friend is easy for me.  I didn't want to end this post with a negative feeling, so tell your kid you love them.  Tell your spouse you love them.  Your children will love you more when you tell them it's okay to screw up-- but only once.  Mess up once-- that's a lesson learned:  mess up twice-- that's teaching your kid how to disrespect you as a parent and they can get away with it.  I learned from my mistakes, simply because I was smart enough to fear my mom.  I love my mom, but as a kid I knew to respect her rules.  For that, I am eternally grateful that my parents loved me enough to discipline me.  

Autism and New Year's Eve

Autism and Growing Up

      My life changed when I heard the phrase, "Your son has autism."  I had so many emotions going through my head and my heart, as I had done some research about autism.  What was I going to do with this diagnosis?  Was I going to hole up in my room and cry?  I initially cried when I first received the diagnosis about Cole, simply because I was relieved I wasn't crazy.  I thought in my head for some strange reason that I had caused this beautiful boy not to speak or talk, because of my pregnancy and labor.  As a parent and now autism advocate, I realize that my life as a mom and teacher became my mission to provide a safe haven for ALL students living with autism.  I went back to SMU to receive my degree in Music Education for two reasons:  I needed to finish my degree to give me the piece of mind that I could accomplish this very hard feat, but also to learn about students with disabilities.  I attended the groundbreaking of the Annette Simmons School of Education and I knew in my heart, I was suppose to go back to SMU when I did.  I had learned so much from music-- could I learn from this amazing school of education that was literally in my back door?  I took two education classes-- one as an elective, and it opened my eyes to something far greater than I could have imagined.  Special education was not really addressed as a class at Simmons School of Education.  I took an educational psychology class, thinking it could help (which it did), but the professor only addressed special education in two of my classes.  I kept asking for more literature, but I had to get my information basically on my own.

     Looking back, I knew far greater about I.E.P.'s and ARD's than my professor (who was only two years older than me, but already had her Doctorate in Education).  My main concern was the lack of information about Special Education in the state of Texas.  Cole was in the first grade when I started back to school, so I had really only been versed in Special Education lingo for a year and a half.  Returning to SMU helped me realize that I was smart, I could help my son beyond the classroom, and that he was brilliant.  I had to find a way for him to channel all of his brilliant charm and mind into speaking.

     I realize now that Cole was talking to me the entire time, but I just didn't listen to him.  The only words he said were, "10-9-8-7-6-5-4-3-2-1 happy new year 2006!".  At times, I would get so frustrated with his countdown that I would have to leave the room.  Cole was, and still is, obsessed with the New Year's Eve ball drop in Times Square that he has memorized scripts, days, the exact time a performer is going to sing, when the ball drops, and who pushes the button every year.  I changed my attitude towards his ball drop, simply because he was saying something.  I kept searching for ways to communicate with him, but nothing mattered to him but Dick Clark, New Year's Rockin' Eve featuring Ryan Seacrest and Fergie until 2009.  2009 is when it all changed:  my son started to speak to me and not at me about Dick Clark and Ryan Seacrest.  Everything Cole had obsessed about was New Year's Eve.  By this time, Cole had been to New York (where the famous ball drop occurs every year) five times-- literally, I tried everything to get him to talk!  Cole had found a website through earthcam that listed the events, time of everything that was happening on New Year's Eve, and he looked me in the eyes and said, "Mom.  Look at me.  This is New Year's Rockin' Eve and I want to push the button with Mayor Michael Bloomberg on New Year's Eve at 10:59 p.m. Central Standard time.".  I was blown away-- he told me to look at him!  I was in shock and jumping for joy because I tried for so long for him to look me in the eyes.  I can still remember that day:  December 31st, 2009, at 10:58 p.m. (Dallas time).  New Year's Eve has become, and always will be, our favorite holiday because of this breakthrough I had with my son.

     I have come to love Cole's countdown now, as he loves the Macy's Thanksgiving Day parade (5-4-3-2-1 let's have a parade!) and the New Year's Eve ball drop.  He is my son, he is perfect in my eyes, and if people think we are funny, it's because they haven't walked in our shoes.  We were in San Antonio, TX, recently for my annual T.M.E.A. convention (think 20,000 musicians and music teachers in one place) and something amazing happened.  Cole and I were walking across the street from one hotel to the other, and I noticed Cole doing the countdown again (he does it a lot!).  I asked him, "what are you doing Cole?  It's not New Year's Eve!".  All he did was point to the traffic light.  There was a voice that was counting down with the traffic light (simulated in the light!), so Cole joined in!  By the time we had made it across the street to the convention center, EVERYBODY was doing Cole's countdown!  Little did they know that Happy New Year was about to commence after the count down!  Happy New Year 2014!

     My life, as I have re-iterated, has not always been sunshine and smiley faces.  We have faced so much together as a family, that I can truly say I would not be in the place that I am today without the love and support of so many people.  I credit God for giving me my amazing husband (our biggest fan and supporter throughout this journey we call life), but also I couldn't have gotten to the point in my life without my brother, his kids and amazing wife Jen, my parents, my in-laws, and my cousins, Kim and Doug.  I don't know if  I was supposed to list names, but I truly am blessed beyond measure!

     Happy St. Patrick's Day!

Parenting 101-- with autism

Parenting 101:  Autism-style

     Okay, so for those of you who are just now reading my blog, this is my masterpiece, so to speak.  This blog came out of creating an environment full of love for my son, Cole, who happens to have autism.  Cole is now twelve years old and is a highly gifted child.  I was watching a show last night (sometimes it takes me weeks to watch a show, simply because it's all about Cole most of the time) that focused on the brain.  The television show-- it could have been a documentary for all I know!-- was about the life of Dr. Temple Grandin.  Temple Grandin is a personal hero of mine; if you don't know who this amazing woman is, google Dr. Temple Grandin.  You won't be sorry.  She is highly intelligent, but was diagnosed with autism at age 3.  Dr. Grandin is now 66, is a professor at Colorado State University, and is also an engineer.  Dr. Grandin did not speak until she was nearly 15 years old.  Her mom was told by doctors that Temple would just lead a life full of complacency, boredom, and frustration.  After watching this show, I realized how much Cole is like Temple.  Cole did speak a few words (Shit, Pizza, and Star Wars-- yes I said shit) when he was young, but trying to break through to the other side was so hard for me as a parent.  I saw the look in his eyes trying to say something.  By age four, I thought, what am I going to do for Cole to help him communicate with me and others?  I put my thinking cap on and thought, "how am I going to get others to know what I know about Cole?".  

     Cole is very smart-- he can work the computer like no other child.  By age one (he was one year and one month), Cole started to play with my computer.  This child stood on his tippy-toes (a sign of autism that I learned years later), and could find ANYTHING on YouTube.  What I didn't connect or realize is that Cole was teaching himself how to read and communicate by computer.  The computer was, and still is, his voice.  Because of YouTube and the computer, Cole has been able to learn (mimic) behavior patterns on how to act in public, how to speak a different language (he has taught himself Russian, German, a little bit of Spanish-- he says he doesn't need Spanish because Mandarin is so much better), but most of all, this is where he taught himself how to sing.  Unfortunately, Cole has picked up a few bad behaviors from YouTube, simply because he knows how to break through security codes I have set.  Forget parental controls-- this kid can look at what I am typing, learn what I have typed, then over-ride my parental control on just about everything within one swoop.  This leads me to a very funny story, that I have only shared with a few people.  Here is your laugh for the day!  I hope I don't offend anyone, but if I do, it's only because I have this boy genius who happens to be in special education.  One evening, as Cole and I were getting ready for bed, he told me he had gotten in trouble with Mr. Larry-- timeout.  Exact words from Cole:  "I'm trouble.  Mr. Larry timeout today.".  Then he started to laugh!  This was what was so confusing!  Mr. Larry was Cole's fourth grade special education teacher and was one of the great ones.  I can only imagine the shock and surprise on Mr. Larry's face, as Cole was surfing the Sesame Street website, and it turned out to be porn!  They have computers in Cole's special education classroom set up with certain websites, Sesame Street being one of them.  What happened initially is something that just happened-- Cole didn't break through a firewall (although he had twice before).  Some pervert loaded porn (it was BAD) onto the Sesame Street website in New York and it was all over the news the next day.  What happens next is the funny part (or at least I thought it was funny).  Mr. Larry did not know why Cole was making funny sounds, along with one other student who was also surfing the Sesame Street website.  They both had on headphones-- a requirement when having the computer on so other students can focus on their work, so all Mr. Larry heard was moaning and "Oh baby.  Yeah do it like that."  The worst part about the whole thing is that Cole and the other boy got ALL of the kids (even non-verbal kids) to moaning and talking!  This story is, by far, my most endearing, funny, sad, and true tale that I could share with anyone.  Sorry if it's offensive, but Mr. Larry and the aides were so happy just to hear all the kids moan and talk.  That was huge.  For obvious reasons, the computer was checked every morning for a year to make sure nobody had added "content" to any of the websites Cole's class was using.  This is one for the books and I can still laugh about it, two years later!  

     As I digress about Cole's unbelievable ability to surf the internet, I put his skills to use when I returned to SMU, Meadows School of the Arts.  I had returned to my alma mater and was completing my degree in Music Education (I was a dual degree candidate for music and education through Meadows School of the Arts and Simmons School of Education).  I only needed one year to complete my degree, as I had attended SMU from 1995-1999, so I thought, I can do this.  I am a single mom who has a child with autism-- how hard could it be to receive my degree from SMU?  I had dealt with life.  I could do this.  I am very smart-- according to my professors, I was very focused and knew what I wanted.  I was not your average SMU undergraduate college student-- 35, a single mom, returning to complete what I had worked so hard for.  I was in a near-fatal car wreck in 1997 (my senior year at SMU), so I always thought in the back of my mind, that car wreck may have caused me to have a child with autism.  I know now that was not the case.  Okay, so this is a tangent with words, but long story short, Cole helped me with two projects while I was a student at SMU.  I wrote a paper about Cole:  writing I.E.P.'s and conducting A.R.D.'s successfully in one of my psychology classes.  Did I mention I received A's in both classes that Cole helped me with?  I was also being pursued by one of my favorite teachers, Dr. Gail Hartin, to continue my education and get a Master's degree from Simmons School of Education.  I knew at the time it wasn't for me, but looking back, I should have continued my education.  Who knows, only time will tell if I need a Master's degree.  I attribute Dr. Hartin with my love of teaching.  She truly inspired me to follow my passion-- write music, teach music, but most of all, enjoy what you are doing.  Cole did a power point presentation for me (he set it up for me, as he was already my boy genius) for Dr. Hartin's class, and to this day, I have never told anyone that Cole basically did that project for me.  I used my own content, but he set up all of the margins, settings, font, EVERYTHING.  What still bothers me is that when I was presenting it to the class (Dr. Hartin asked me to present it to the entire class!), I didn't give full credit to Cole.  He truly is amazing and inspires me every day.

     The funny thing about autism is how to parent a child who is sweet, loving, smart, but can be annoying at times.  When Cole gets in one of his moods, I have learned to back off.  My husband tells me to just not bother him.  I swear, he is so much smarter than me when it comes to parenting Cole.  We have learned so much from each other, that we basically tag-team this thing we call parenting.  My husband knows when I am sad or frustrated with Cole, so he does the parenting when I can't.  We both try to talk to Cole in a calm manner, but sometimes we can both talk over his head.  What I mean by talking over Cole's head is sometimes Cole is angry or mad and doesn't express his feelings with words.  He has gotten so much better with time telling us he's angry (mind you, it took a long time, but we are finally there I think).  Cole, in general, is a very happy boy!  If I could, I would share videos with you through this blog, but I don't know how.  I guess that's one for Cole to show you, YouTube style!  Cole is a creature of habit-- chore charts, job charts, and flip charts are all a part of our daily lives.  If there is something out of order, even if it's reversing the order of his shower, how I help him with his clothes, simple tasks you and I take advantage of, this can put Cole in a bad mood.  The charts are wonderful, but at times, it's frustrating for me as a parent to see my child struggle with just one change.  You get used to that change and the behavior that comes along with change, but it still is a learning lesson for all of us.  I am truly thankful for pictures and charts because it has made our life so much better, but sometimes, we just need a break from life.  When life gets too complicated, take a deep breath, relax, and take a day off.  I did that recently with Cole (doctor's appointment during school at 10 a.m. and then a day with my favorite kid) can help anyone rejuvenate one's soul.  There is nothing like going to North Park, eating at Neiman Marcus with our favorite waitress Dori, then off to see "Frozen" for the second time.  Sometimes life just calls for these moments, even if you don't think you need them.

     Okay, so today I am 40 years old, the happiest I have ever been in my life, and I am celebrating it with the ones I love!  Life couldn't get any better for me.  Parenting is the hardest job I have ever had, but I wouldn't trade it for the world.  My son IS my life, and if you haven't figured it out by now, he is what keeps me going.  Cole and my husband are my inspirations for living life to the fullest.  As Auntie Mame once said, "Life is banquet.  People are starving to death".  I plan on living my life as I always have: with gusto, a little bit of glamour, a lot of humor, but most of all, love.  Cheers to turning 40!!!!!!!!!!!!

God Gives Us Second, Third, Fourth, and Infinite Chances!

Second Chances:  God's miracles

     I totally believe in miracles and God giving everyone second, third, fourth, and fifth chances in life.  That being said, I know some people don't believe in God, which is okay too.  Personally, I really don't know how people exist without believing in a Higher Power, but that's only my opinion.  I have always felt secure in knowing that I belong to God and that I have always been afforded the amazing right to worship in an environment that is free of bias and hostility.  I know what you are probably thinking:  this woman is a holy-roller and I don't think I want to continue reading this blog, because she is going to stuff her rhetoric and faith on me and try to make me a Christian.  I promise that I will NEVER force anyone to read my blog (okay, maybe only my family to proof errors), but as a practicing Christian in the Methodist church, I really don't know where I would be without God and my faith.

     My husband, who is the most sincere, giving, loving, and amazing person, will attest that I have had some issues when dealing with my past and present life.  We waited five and half years to get married, simply because I was not ready to be married again.  He is, and always will be, my rock, best friend, amazing lover, soul mate and the love of my life.  We met in November 2005, and we waited a year to start dating, because I was going through my divorce from my first husband.  He waited patiently, and he even dated another woman, which kind of threw me when he told me about her!  However, I knew in my heart (and apparently he did too), that over the course of time, I was the one for him.  The reason I am delving into our personal story is because we met at church and I feel God led me to him.  I went through so much with my first relationship, that I made my sweet husband jump through hoops for me, which was so wrong.  He didn't deserve the crap I gave him, but he continued to lift me up and care for me like no other person I had ever had a relationship with.  I dated a couple of guys after my divorce, but eventually we found each other again and our first date was on December 29, 2006.  I really had no idea that five and a half years later, we would be married at the same place we met-- our church.  He gets me and Cole like no other human being, which makes me love him more every day.  Hence, God gives everyone second chances, because I met my husband at church-- is that a coincidence?  I think not.

     Alright, so I am writing about other miracles when it comes to my life and Cole's life.  Listen up:  don't take life for granted, because if you do, you will wake up one morning and realize, "Hey, what just happened?".  I am turning 40 this Friday, and as my mom told me the other day, I am exactly in a place where I need to be-- happy, whole, and incredibly giving to others.  Cole's love of music (which is beyond contagious), is something that has given back to us immensely.  We started the original "Cole Warren and the Jambox Boys" a little over two years ago.  Cole's school has an end-of-the-year talent show, and when Cole was in the third grade, he wanted to sing the song, "Imagine".  I didn't know this until the day of the talent show, so unfortunately, he didn't get to perform.  The following year, the musical "Jersey Boys" became a mainstay in our household, so I told Cole to pick out two songs for the fourth grade talent show.  He picked "Sherry" and "Walk Like a Man", which fit his voice perfectly.  During this time, I was going through turmoil at my school, because I was a middle school choir teacher, who didn't know what in the world I had gotten myself into.  More about that in another blog-- let's just say it was one of things I had to try, but I wasn't given the proper support by administration, because I had 68 kids in one class, without help.  Alright, now back to Cole!  "Cole Warren and Jersey Boys" (we had to change the name to Jambox Boys, due to copyright law), was not an overnight hit with his friends, but they came to love it, simply because they got to hang out with Cole, play football, eat-- ALWAYS have food around for kids (this goes without fail), and then eventually get to practicing.  One boy, Gabe, even told me how much Cole had taught him and that he loved coming over.  Gabe has become Cole's best friend and we are so thankful for him.  Gabe took private piano from me, which opened up a whole new world about private music and teaching.  Gabe is just an amazing kid, but so are all of Cole's friends.  We have had changes to the band, simply because of other commitments, but Gabe is the only original band member (besides Cole), that has stuck with us and we are better because of it!  Tyler is still one of the original band members, but he only joins us when he's not playing sports or doing homework-- Tyler is somewhat of a boy genius and gifted athlete.  Okay, so I could write a book about all of Cole's friends, but because of these boys, Archer, who is Cole's lifelong best friend, and Luke, the band would have never been created and going two years later!  I give thanks to their parents and these sweet, young men.  I feel God gave us music, simply because it opened my eyes and Cole's world to friendship.  

     We were given a diagnosis of autism from Cole's school at age six.  Cole's first pediatrician never believed Cole had autism, so when he was officially diagnosed, we were basically told to "deal with it".  We changed pediatricians twice, and even tried a developmental pediatrician (money not well spent, that is not covered by insurance).  We are beyond blessed to have found a practice full of pediatricians, Forest Lane Pediatrics, that embraces Cole and all of his quirks!  I call Cole's quirks "Cole's little cole-isms", and they get him, simply because they are great doctors.  As I digress about Cole's many doctors, don't confuse this with "as needed", but rather embracing change.  As a first-time mom, I interviewed two pediatricians when picking out one for my Cole.  The first doctor seemed okay, so we went with him because he was a friend of one of my friends.  This doctor was good in the beginning, but after I realized there was something different about Cole, he never really helped us.  The last time we were at his office (we changed doctors when Cole was 8), he blamed Cole for putting play-doh in his ear.  We were there because Cole had a staph infection and it wasn't clearing up.  He told me that Cole would grow out of the staph infection when he hit puberty (mind you, Cole is 8!), but in the meantime, just put him in a bathtub with clorox bleach and that should do the trick.  My mom instincts kicked in and I let him have it.  I told him, have you not treated Cole for 8 years and KNOW THAT HE HAS A FEAR OF BATHING AND HAS BEYOND SENSITIVE SKIN?  I was in shock and disbelief that this pediatrician, who had been practicing since 1986, told me to put Cole in a bathtub full of bleach to treat a staph infection that would go away when he hits puberty.  After that visit, my now husband and I searched for another doctor for Cole, simply because we couldn't believe what we were hearing.  We finally found one that was covered by Cole's insurance and seemed to be a good doctor.  We stayed with this doctor for nearly a year, as he was retiring.  This doctor was a good transition doctor for Cole.  I am so thankful my husband and I stood up for Cole, simply because he needed to get well.  We went through this ordeal from 2010-1011, trying to find the right fit for Cole and for us, simply because we knew this doctor was retiring.  We interviewed two practices and went with Dr. Michelle Kravitz and Forest Lane Pediatrics.  She is wonderful and so are all the doctors at this practice.  

     When choosing the right doctor for your child, make sure to ask three things:  1.  Does this doctor have office hours after hours?  If not, do you have a clinic you refer your patients to on the weekends?  2.  Do you treat children with all disabilities?  (when asking this question, they must say yes, because of law, but you will know when they answer if they are the right fit).  Also, ask if there are any doctors specifically that treat "said disability" in the practice, and  3.  Do you have the proper resources to give parents and guardians when finding the right specialist, as needed, for a child with autism or other disability?  The reason I am telling you this VERY important information is because we have gone through the referral process for a very long time, and have not had much luck in finding the right specialists for Cole, simply because of insurance.  Make sure when checking on specialists, that you ask them specifically if they are covered by general health insurance AND behavioral health.  We have found out that there are two companies that work for us-- general health insurance (i.e. Blue Cross/Blue Shield) and behavioral health (Global United Health/Optum Health Insurance).  Make sure that you check with your insurance company first, because each resource is different.  When dealing with autism, this falls under behavioral health-- not general health.  This took me a long time to understand, but I am thankful for this knowledge, even if it took me eleven years to figure out!  Make sure that when addressing SPECIFIC needs for autism, you ask them who their behavioral insurance carrier is.  This has been a very long road for us, and if someone had given us this valuable information, it would have save us thousands of dollars.  That being said, I still would have spent those thousands of dollars to get Cole to where he is today-- a happy, loving, caring, and conversational individual!  Pat Minter was our saving grace, and has been Cole's private speech therapist since he was 6 years old.  We have not seen "Ms. Pat" since September, as our insurance has changed, but we all miss her.  She is a great friend to us all and we are all better because of Ms. Pat.

     The best resource when finding out, "What can I do to help my child?", is ask around at school.  There are early childhood programs at your public school that can diagnose your child as early as age two.  That being said, I didn't know about this until Cole started kindergarten (hence, Cole didn't go to an early childhood program through his public school, because we didn't know it existed and he didn't go to Day care or Mother's Day Out-- read potty-training, and you'll know why he didn't go to Daycare or Mother's Day Out).  I basically became that helicopter mom when trying to find out how to help Cole, so he attended Park Cities Language and Pathology Center at age 4.  We stayed there until he started kindergarten at White Rock Elementary.  Also, join an Early Childhood PTA (ECPTA).  This was the best thing I did for myself and for Cole.  I made great friends at my North Dallas ECPTA, and they gave me great comfort while parenting Cole as a baby and toddler.  Not every ECPTA is welcoming (I visited two others before joining North Dallas/Preston Hollow ECPTA).  I didn't feel that connection with the other moms at the other ECPTA's, until I joined the North Dallas ECPTA.  That being said, they were the right friends for me and for Cole at that time.  You will find that while parenting, there are friends that you can count on and lean on while your child is a certain age.  I could pick up the phone today, even though it's been nearly 11 years since we have gotten together, and see how Diana is doing.  Having that "mom/parent" bond is necessary for survival at ANY age.  Having a child with autism doesn't mean you have to put your life on hold-- if I had not had my friends, Diana, Lisa, Julie, and Farrah, I would have been a mess.  Taking care of yourself is the best advice I could give anyone, whether your child has autism or not.

     Okay, so this was a long blog post, but I wanted to make sure I addressed everything that has been on my mind!  Happy spring break and I, for one, am so thankful for this spring break.  God DOES give us second, third, fourth, and infinite chances simply because I am here.  I have been through so much with Cole and his needs, that I basically ignored my needs as a mom and wife.  I was not feeling good in January, so I went to the doctor to see why I was having nausea.  As it turns out, I had four ovarian cysts, after nearly two months of not knowing what I had.  I have EXCELLENT DOCTORS and if it wasn't for me changing doctors in 2012, I could have been a basket case.  I have a history of ovarian cysts, and had to have one removed in 2008.  That being said, I was not ready to face menopause or a hysterectomy.  My doctor, Amy Sigman, took great care when diagnosing my cysts.  I did have surgery a week ago to remove the unknown 4 cysts (we both thought it was endometriosis, as they didn't show up on two sonograms).  My recovery has been truly amazing, simply because I did my research before I went in for surgery.  If I had not changed doctors, I would have had to go through the process of having a hysterectomy.  I had to go through a battery of tests, one of them the "cancer blood test", knowing that I was being tested for cancer.  I knew it was probably imminent that I had cancer, simply because my mom had it and her half sister had breast cancer.  I truly believe after being told that one of the cysts looked 90% like cancer, it was my time to face my battle and journey.  Liquid cannabis was my drug choice, so what was I to do while Cole was in school?  

     God knew it wasn't my time to deal with cancer, so I truly believe he touched me and took away the cancerous cysts.  This happened to my grandmother, so why couldn't it happen to me?  I have always believed and trusted in God, simply because I know He has my back.  Peace out and God bless each of you reading this blog.....

Life Happens: make lemonade out of lemons!

Life Happens:  Make Lemonade out of Lemons!

I love my life-- don't get me wrong, I can get down at times and take it out on the ones I love the most, but overall, I have a great life!  I have always tried to be a positive person and live my life to the fullest, so I think this is why Cole is not your typical kid living with autism.  The hardest part of autism is telling Cole no.  I am a pushover when it comes to parenting him, simply because I want him to have everything in life.  That being said, I have had to learn how to say no in a loving way, because if my tone of voice sounds forceful or in the slightest way mean, he will have a meltdown.  Meltdowns in our house have become few, simply because I have tried to do my best by communicating my needs with Cole.  The next section will address how to overcome meltdowns and outbursts, while at home and out in public!

I am truly grateful for Allison Ausema, Cole's former elementary D.P. teacher.  Acronyms will become normal, as I write this blog-- D.P. stands for Developmental Program, also known as special education.  Mrs. Allison gave me a card one day while Cole was leaving school and told me I could use it over summer break.  This little tool-- it was a laminated flip card with different emotions and tasks-- has been my savior since third grade.  We were at Walt Disney World one year (Cole was in fourth grade), and a meltdown started, because "Bear in the Big Blue House" had been replaced by "Jake and the Neverland Pirates".  Alright, you are thinking, this kid is ten years old and he is upset over a show that has changed?  Let me tell you, that flip card was my protection against crazy parents, because Cole has always been a big kid-- the biggest and tallest in his class every year.  I didn't want to freak the other kids out (the show was catered to pre-schoolers), so as we passed each parent, I showed them this flip card and tried to explain to them my son has autism and was very upset they had changed the line-up.  Once I calmed Cole down, which took half the time it normally did in the past, all was well in our world.  

I feel really sorry for parents who teach their kids selfishness.  Empathy has always been my number one priority when teaching Cole and his friends about life.  Cole can become outright mean at times (now it's the hormones), but if you can find a way to combat a meltdown, in the end it will help not only the person having it, but others around you too.  I think the best advice I can give you is realize your kid is different, which is a great thing!, but be prepared when a meltdown happens.  We have come so far from major meltdowns (think throwing up, flailing yourself on the floor), simply because of thinking ahead and preparing for what will happen next.  In our case, that little flip card has been our God-send!

I will write another post later, but it's time for church!  We try not to miss church, because Cole has a special needs Sunday School class that is just wonderful.  Have a safe and happy week and I will write more later!  One last thing, you probably wonder what the flip card looks like.  On each laminated card, there is a face that shows angry, happy, sad, and excited.  There are also simple, basic tasks, such as washing hands, going to the bathroom, and waiting in line.  These simple tasks and emotions  help all of us, but especially Cole.  I will write more and find the website to make one of your own, simply because I think this is an invaluable tool to have for ANY child!

Choices: Daycare and potty training

Choices

As I sit down at my computer and think about what to call each post, Choices popped into my head today.  I realized last week after reading one of my friend's Facebook posts that her son was recently diagnosed with autism at age 3.  Her post made me realize that everyone has a story-- we have been living with autism for over six years and I wish Cole had been diagnosed at a younger age, simply because there is so much help out there for people living with autism.  I write my blog in bigger font, simply because it helps me see clearly what I am writing.  Today's post is about our life in the beginning.  I won't name any names, but this post is dedicated to a very sweet family that I have had the privilege of knowing since I was born.  The dad and I grew up in the same church, and even though we don't see each other on a weekly basis anymore, this family was a God-send to me growing up.  His younger brother and I were the same age and my older brother grew up with this dad, so as I said, we love you guys and I hope this helps you on your journey with autism!

I was frustrated with Cole when he turned 3, simply because this was the time of our life that he had to be potty trained.  This "big" issue is something that has always bothered me, even to this day.  Day cares and mother's day out programs don't address kids having potty training issues, when accepting a child into their care after age 3.  If your child is not potty trained by age 3, they will turn you away.  As a parent, I felt like I had failed Cole miserably in this department.  What did I do wrong?  Do I show him how to pee in his little potty at home or do we take another approach:  run naked in the house until the urge hits?  I had been told many stories by "seasoned" moms that it takes a little longer with boys, so be patient.  I was patient, but school wasn't.  We were kicked out of 2 Mother's Day Out programs, simply because I couldn't "teach" Cole how to go potty.  If this gets too graphic, skip the next paragraph.

As a mom, I wanted to be the best at everything-- this is what I had grown accustomed to as a child, teenager, and then young adult-- the best.  When I failed miserably at training Cole to go pee or poop in the bathroom, I wanted to cry and lock myself in a bathroom for hours.  Self doubt bore it's ugly head in my mind and I thought I had failed at motherhood, simply because I couldn't get my son potty-trained.What have I been doing wrong?  I have a crappy marriage (divorce during this time didn't help the potty training on my end, for obvious reasons), and I can't even get my son to go poop in a potty. Again, skip ahead if this is too much to read.  I tried everything-- a personal DVD player in the bathroom for Cole with his favorite Sesame Street episode, music playing in the background about going to the potty, and then actual underwear-- this was the last straw that made me think and know in my mind something was off with my Cole.  I tried books, asked other moms how they got their child to go potty without too much hassle at the age of 3, and I even tried to show Cole-- literally.  Now here is the kicker:  not once in my mind did I think Cole had autism, simply because he didn't show any symptoms.  Looking back, I can see clearly now that this was just one of the things I overlooked when Cole was young.  Cole and I lived with my parents during this time, and even my mom was getting frustrated with me and with Cole about the potty-training.  If I couldn't get him potty-trained, by God she could do it-- my brother and I turned out fine, so why couldn't she train Cole?  Secretly, I thought this was quite funny to see her try and fail at it.  Nobody wanted to think something was wrong was Cole, as he was so sweet and loving, but I knew there was something that just didn't match up.  Autism is so much more in the public eye now, but ten years ago, it was just becoming known.  Looking back during these early years, I wish I could have just accepted Cole for being Cole, and not the beast of "potty-training" that is so focused on the American culture and society we have become today.  With time, I believe there will be more studies, day schools, mother's-day-out programs, and hopefully more empathy for young kids and parents when they travel this journey called autism and potty training.

Cole is now a very healthy, twelve year old young man and I imagine you are wondering if he is potty trained!  To answer this question:  YES!!!!!!!  My answer to how did we achieve potty training:  Sarah K.  She was a God-send and I don't know what we would have done without this saint of a woman!  She was one of Cole's very first aides at school and is a very loving and kind person.  Her adult brother has autism and Sarah has this amazing gift with all kids-- especially kids with disabilities.  Sarah is now a teacher (she was attending the University of North Texas while working) and was certified specifically in special education.  Sarah broke through that mental barrier Cole had about going potty.  Sarah stayed with Cole at school in the private bathroom, designated specifically for the kids in the developmental classroom, and got him to go number 2 at school for the first time!  Cole was eight years old before he would go number 2 in the potty, but do I care?  Eight years old was a big year for Cole-- he went poop in a potty, started talking, and began on his personal journey of finding his voice through music.  

There is NO WAY I would change my life in any way, simply because it is an amazing life I have.  Cole astounds me everyday-- he has learned a number of languages through YouTube (German, Russian, Spanish, and Mandarin Chinese-- I think that's what it's called!), but I couldn't get him potty trained.  There are times, I look back and can reminisce about my frustration with Cole and that potty, but overall, we both have come a long way.  

The best advice I could give to any parent-- whether your kid has autism or not-- is to be patient with them and be positive.  Negativity gets a person nowhere when it comes to life.  Cole responds to positive energy, and when Cole is happy, we are all happy!  Don't push issues that you think are big with your child.  Nurture your kids gifts and talents.  You will be surprised and amazed at how awesome your child is, if you just raise them to be loving, kind, patient, and understanding to every human being!  This is easier said than done, but with experience, it CAN be accomplished.  You will be a better parent, spouse, and adult if you can just chill and enjoy each moment you have with the people you love.  Just breathe and let life happen!

Next subject-- the dreaded bath and shower..........