Saturday, November 11, 2017

How We Love

“More marriages might survive 
if the partners realized that sometimes
 the better comes after the worse.” 
-Doug Larson


I think many people are a bit in awe of the relationship Allen and I have built.  Notice I said, built.  There is nothing about marriage, or any relationship for that matter, that sustains without constant reconstruction.  
We were high-school sweethearts and I don't think anyone expected us to make it...including us.  But we did.  We have.  We still are...making it. 
In fact, I would like to boldly proclaim that today we love one another more than we ever have. Allen and I have been married for almost 20 years.  In all, we've known each other and been in some type of relationship for 27+ years.  Amazing. Truly, I am amazed.  It has taken a lot of work and even more heartache to get us to the place we are today.   We've had many struggles and barely made it through the first year of marriage without filing for divorce.  We were young.  It was hard. It's funny to think back on the things we struggled with then, neither of us knowing what real struggles could be.  
It has been said that tragedy can make or break a marriage. For us, thankfully, it made us the people we are today.  In 2002 we lost our first child to miscarriage.  It was an early miscarriage, I was only around two months pregnant.  A few months later I was pregnant again.  Lexi Rae was born in April of 2003. We were scared to death and overjoyed at the same time.  When Lexi was just over 9 months old, as I held her in my arms...with Allen standing behind me, she left this world and went to heaven.  Child loss is indescribable, but the bond Allen and I formed during those months can never be broken.  He was my rock then, and he is my rock now. You can read more about that story here, Heaven Has A Teenager.  
So much has changed in our life since we lost Lexi in 2004.  We are older and I'd like to think much wiser. Plus, we have Drake. I'm sure most people believe our lives are cursed.  We've lost two children and now we have an autistic child.  Nothing could be further from the truth. I cannot imagine a world without Drake.  He has brought so much joy and completion to our lives. He filled a huge void that nothing else would have filled. Has it been hard, yes.  Do we worry?  Absolutely. We've had many arguments on what is best for Drake.  We fuss, we fight, we get angry, we raise our voices, but not once have I worried about that man walking out and leaving us. Not once. Above all else, we are a team.  No matter how crazy my idea is, if it will benefit Drake and we are able to do it...we do it. One thing I know for sure is that Allen trusts my motherly instinct.  It has proven itself too many times not to trust it.  
So, how do we keep our love for one another and our marriage strong?  We wing it, mostly. Seriously though, there is no manual for this stuff.  However, I do believe it requires two people with the same common goal....making it work, no matter what. For us, it also requires these three things: 

1. Jesus. I can honestly say that we would not be married today without our faith. The relationship Allen and I have built with one another would not have been possible without trusting the Lord to see us through many, many trials. It would take me days and days of writing to list all the blessings we have received.  Many of them you would not believe. There have been so many, "that was God," moments.  The tragedies we have faced are nothing compared to the hope we have been promised.  I am so thankful every single day for the grace, mercy, forgiveness, and love we have been shown time and time again. 

2. Making time for us.  When Drake was diagnosed with autism over three years ago our lives changed dramatically. I quit my job and spent the majority of my time on the road getting Drake to and from therapy.  It was so different for us, but necessary. That very summer we started a new nighttime tradition.  At night, after Drake was asleep, we made time for us.  Was I exhausted?  More than you can imagine.  However, that 'us' time was more important than sleep.  We watched TV, sat on our porch, or played a card game/board game. Three years later, we still do this 3-4 nights a week.  Of course now we are lazy and generally just watch TV, but it's still OUR time.  We laugh, we talk, and we just enjoy one another.  I would also like to add the importance of intimacy. We make time for it.  It's a must in our marriage and important to keep those fires burning. Allen flirts with me now more than he did in high school and it makes me feel like the most beautiful woman in the world. He spoils me rotten and honestly treats me like a queen.  This man cooks, cleans, washes dishes, vacuums floors, and co-parents like a boss. When he has Drake, he isn't a babysitter...he is a parent.  Sexy, right?  I'm one blessed lady. Sometimes I feel so unworthy of such a man.  I can be hard to love.  I'm ill-tempered and on edge many days, but he knows how to make me laugh. He  knows that my stress level is high, that I'm exhausted and somehow he has learned how to love me in spite of my bad attitude. He gets me and loves me anyway. 

3. Find a babysitter. I know, I know...easier said than done.  Listen, it took us over two years to find someone.  About once a month we get away for just one night. By the way babe, if you're reading this..we are past due.  That may not seem like much, but it is the world to us.  An old college friend of mine is our babysitter (another one of those "that was God" moments).  Don't get me wrong, I was absolutely terrified the first night we left Drake.  It took lots of preparation and 52 pages of notes, but we did it. Drake absolutely loves it, but it's not possible that he loves it more than we do.  It's our one night to eat a nice dinner and just relax.  Sometimes we watch a movie, but mostly we find a place with a balcony..we sit on it, listen to music, and relax.   It's the most amazing thing in the world. We still are not ready to venture out and get away more than one night, but I think that is definitly something that is in our future plans.  

Our love has never been easy, but it's ours. Long ago, because of tragedy, Jesus, and just good ole love...we became an amazing team. I can't imagine doing life with anyone else.  Marriage takes commitment. You must be committed to doing whatever it takes to make it work....and it takes both people working toward that common goal. It's more than words, it's many, many actions over  and over that shows the other person that you're in this for the long haul.  Nothing about life is easy, and having  children with special needs puts so much pressure on an already strained and busy life.  However, it's doable. We are doing it each and every day.  If I could offer advice it would be to make love fun again. Flirt with your spouse, have romantic dinners (even if it's just at home), make your spouse feel important, encourage them, champion them, support them, and be present(perhaps the most important).  



 Love is patient, love is kind and is not jealous; love does not brag and is not arrogant, does not act unbecomingly; it does not seek its own, is not provoked, does not take into account a wrong suffered, does not rejoice in unrighteousness, but rejoices with the truth; bears all things, believes all things, hopes all things, endures all things. 1Corinthians 13:4-8



Wednesday, July 26, 2017

Kindergarten Social Story For Teachers



A Social Story About Drake










GETTING TO KNOW ME



How Autism Affects Me:
  •  I am non-verbal.  This simply means I have not found my voice. I understand most of what is said to me, as long as you don’t use too many words.  I communicate quite well by other means.  Hand leading, sign language, persistence, and my  AAC communication device (it’s like my thoughts in an iPad. How cool is that?) I have something called, Apraxia of speech.  This means that my brain and mouth have not made the connection needed for spoken language. 
  • I am a visual learner. I will be less frustrated with visual schedules and reminders. I’m very observant and curious of what is going on around me…even if I don’t appear to be. 
  • I can be very manipulative and will try reverse psychology to get what I want.  (I can’t believe my mother told my secret)
  • I sometimes struggle with making eye contact.  This in no way means that I am not listening…quite the opposite in fact.  I listen better when I can process without having to stare at someone’s eyeballs.
  • I may have trouble processing language.  This is particularly difficult for me if I am being asked to do something I am unfamiliar with.  Please don’t use too many words.  It is better to show me, rather than tell me. 
  • I get frustrated easily if I cannot do something.  I learn best by repetition. Don’t give up on me, if you continue to show me and encourage me, I will get it.
  • Sometimes I have high levels of anxiety.  My breathing gets heavier, my palms are sweaty, my complexion is pale, and if things get really bad I may throw up (although I haven’t done that in a long time).  If I am anxious, please try to show me that everything is okay.  Keep reassuring me and keep Koda nearby to help me feel safe.
  • Transitions can be difficult for me because I do not love changes in routines.  I’m learning to cope with this.  Visual schedules and steady routines help.  I also have my dog, Koda, who has helped ease my anxieties.
  • I stim when I get excited or I’m really happy (which is most of the time).  Stimming can look strange to others, but it is something I need to do in order to regulate my senses. As I get older I will realize that some types of stims are best to do at home. I also tend to be more comfortable if I can have something in my hand like a sensory toy. My stims include, squealing and sometimes screaming (we are working on this in ABA), clapping my hands, or putting my fingers together and tapping something. Most of my stims are vocal or auditory.
  • I am not aggressive at all.  I’m very affectionate and quite the ladies’ man.
  • I am not a runner.   I like to be with others and seldom want to do anything on my own.
  • Being non-verbal  causes me to have high levels of frustration when I cannot effectively communicate what I want, or if I don’t understand what is being asked of me.  I scream, rather loudly, when I am at the end of my rope.  Frequent sensory breaks will help me to feel more at ease.  
  • I’m what is known as a sensory “seeker.”  I love movement, jumping, touch, affection, tickles, hugs, squeezes, water play, climbing, and rough play.
  • I have a couple of co-morbid conditions that often go along with autism. Apraxia of Speech, Anxiety, and I am currently being evaluated for Dyspraxia ( which could explain some of my frustrations in motor planning).






What I love:  
·      I love my service dog Koda. 

·      I love swimming and water. In fact, I taught myself how to swim, hold my breath underwater, and I can swim the length of my pool this way. 

·      I love to jump on a trampoline.

·      I love to swing.

·      I love animals, particularly farm animals.

·      Books, books, and more books.  Picture books are my favorite. I love books with animals, Pete The Cat, and Dr. Suess.

·      I do not like a wide variety of foods..but I can eat a truck load of what I do like.  Pizza is my favorite.

·      I love chips

·      I love my Ipad.

·      I love Curious George.

·      I love games like Break The Ice.

·      I love to match and sort anything.

·      I love music and nusery rhymes. Music makes me happy.

·      I love my therapists.

·      I love Tumbling and my coach, Brodie.

·      I love other children, although I’m not always sure how to interact.

·      Sensory toys that are squishy, slinkies, fidgit cubes, etc.



Things I do not love:

·      Too many directions at once.

·      Change in routine.

·      People not understanding what I want.

·      Loud or unfamiliar noises

·      Cleaning people (Please be patient with me, this is a phobia of mine)

·      Being told to do something.  I sometimes get frustrated with demands.

·      Trying new foods.

·      Trying something and failing.

·      Being asked to participate when I don’t know what is expected of me.

·      Being told “no” when I don’t understand how I am wrong.


These are a few things about me.  I hope you know that I want to do well in your class.  I want to make friends with other kids but I will need help and patience. Please help me as I adjust to your style of teaching and realize that I learn differently and can get easily frustrated.  More than anything in the world, I want to feel accepted and I prefer to be treated like everyone else.  I also need you to help my friends understand what autism means and how it affects me.   It is simply a different way of learning, but learn I will. 







Koda


Koda is my service dog.  My parents worked really hard and raised lots of money to get her for me.  She is my best friend.  I’ve had her with me for over a year now.  She has taught me how to play, how to use my imagination, and how to interact better.  Having a service dog is still new to me and I am always learning how to use Koda to help me feel calm and safe. When it’s possible, I would like for Koda to be near me, but she doesn’t always have to be right under my feet.  Once Koda gets adjusted to being in the classroom with me please feel free to pet her and give her love on occasion.  She loves attention even more than I do!  It must have something to do with her being a girl….
My mom is going to attach her list of commands so you will know how to talk to her.  She is like me in many ways, mostly because she doesn’t talk.  But, like me…she listens very well. Thank you so much for allowing her to be part your classroom this year.  I know you will love her just as much as I do before long.



If you ever have any questions about Koda please feel free to contact my mom. She will be glad to help in any way she can.

I’m so excited about being in your class this year.  I hope you are excited to help me grow!


Love,
Drake



Friday, June 2, 2017

Finding the Light

I'm sure everyone has read  Welcome To Holland.  This short but powerful piece has been useful to me several times on our journey.  I often share it with folks who may not understand what it feels like to find out your child has special needs.  After all, we all go through our lives doing what we know how to do...until we need to learn a different way.  Being a special needs parents is exactly that....a different way of parenting.

Lately I've been thinking a lot about how my life has changed since Drake was diagnosed with autism  three years ago.  In some ways  life before seems almost dreamlike.  Yet, I don't find myself yearning for it.  I think early on I made it my mission to do anything and everything in my power to help him have a happy and successful life.  The first year was tough, trying to navigate this new world.  A world I had no clue about until I dove in, feet first.  Or maybe it was more like a belly flop.

To me having a child with special needs, autism specifically, is something like this...


Receiving your child's diagnosis is much like being in a very light and bright room....but suddenly everything is dark. There is no light anywhere.  You  manage to find the door, open it up and walk into another dark room.  Each and every time you find your way to a new door there is nothing but darkness.  You scream.  You cry.  You panic.  Or maybe you like the darkness?  Perhaps you need the darkness to envelop you so you don't have to think about how to get out of the room. Could it be that you're too afraid to try?  You're unsure of yourself and feel like giving up.

You wonder many things.  Why has this happened?  What caused the lights to go out?  Who can I get to help  me?  Even if I can think of someone to help me, how will I see to call them?  How would they find me in this very dark place?  You do not know anything about navigating your way because all of your life you have had light readily available.  You've never had a reason to learn about finding your way without it.

Then suddenly you feel this little tug on your hand.  In that moment you remember that you are not alone.  Your child is with you.  Mind-numbing fear begins to creep its way into the very recesses of your brain. Both of you are in complete darkness with seemingly no way out.  You try to pull yourself together because you need to be strong for your child.  You don't want him/her to be afraid.

You begin to feel your way around the room.  You look for the light switch, you look for candles, flashlights, or anything that could be a source of light.  The entire time you are holding onto the child so they will not get lost in this dark room.  The thought of them getting away from you scares you far more than the darkness.  It's so incredibly difficult because for some reason your child cannot speak in this darkness.  Yet surprisingly, the child isn't afraid at all.  They are content, happy, and seemingly at ease in this very dark world.

Eventually you get yourself together and figure out ways to navigate. You learn to do things in the dark.  You learn to rely on your senses to get around in this dark world.  You keep trying new things until you learn how to live life pretty comfortably in the dark.  And as always....that little hand is tugging you, leading you, pressing you to move forward.

Then one day you realize there is a sliver of light.  It is so tiny that you feel like your mind is playing tricks on you.  You try not to get your hopes up and even wonder if you are hallucinating.  Days, weeks, and months pass until one day you realize each day has brought a little more light.  You can actually see things in the room again.  Things still look a bit dull and somedays you can see much better than others, but you are relieved to see light again.

You also realize that other people have been there in the dark with you and your child.  You couldn't see them for your own fear and worry.  You begin to have conversations with them and are relieved to learn that you are not alone. Walking around in this very dim, sometimes dark room begins to become more bearable.  Sometimes you wonder about all those people you used to know who are still in their very light and bright rooms.  You wonder why they never came to help you while you were in complete darkness.  Then you realize they couldn't come because they don't understand the darkness.  They didn't have a little hand tugging them to plunge in further. Still, it hurts at times.  They could have brought you a flash light.  They could have checked on  you.  They could have helped in some way.  Later on you learn that sometimes dark rooms are not for everyone.  Not everyone has the privilege of learning to walk around in the dark.  Not everyone gets to feel the joy of seeing that first glimmer of light.

This journey with Drake has taught me many things.  I can assure each and every person reading this that I have more light in my life now.  Drake has taught me far more than I will ever teach him.  No, my life is not the same, but when I learned to walk around in the dark and I held tight to Drake's little hand I found a new me....a me I didn't know existed.  Our life is different.  The room is still sometimes dark and scary, but I also know that light can always be found.  As long as I have this little hand in mine I will do whatever I can to wait on that light, no matter how long it takes.








Tuesday, April 18, 2017

Fourteen Candles

There isn’t a day that passes when I don’t think of her.

Of course one could say that is huge improvement from dwelling on her every second of every single day.  But, I suppose after 14 years things change. 



 Lexi would be 14 years old today.  Surreal. 



I remember the moment she was born and how terrified and overjoyed I was at the same time.  I was a brand-new mama.  I didn’t know what to do with a baby, but I was so excited to try.  However, right from the start I had this gnawing feeling that something wasn’t right.  One week later we found out that her heart was very abnormal and our worlds would be altered forever.  I never dreamed that she wouldn’t live to see her first birthday.  I never dreamed that I would only have her with me just over nine months.  I never knew pain until I held her fragile body in my arms until her heart stopped beating. I explained most of our journey and our loss of Lexi in last year’s blog, Heaven Has A Teenager.

Every year since I started this blog for Drake, to spread awareness for autism, I promised myself that I would give tribute to Lexi too.  Technology wasn’t as advanced when she was here with us.  I didn’t have an outlet to share my thoughts and feelings.  In many ways I’m glad.  The emotions I felt during that time were too raw.  Losing a child changes people in ways that nothing else can.  I think most people assume that if you survive such an ordeal that you are strong, brave, and can handle almost anything else. 

The strength that comes from losing a child is not the same strength that comes from surviving cancer or surviving a horrible car accident.  Child-loss brings fourth unwanted strength.  A type of strength that is forced.  A strength that makes you trudge forward, while a piece of your heart is buried under a small mound of dirt in a little white casket. 

Yet, despite such intense heartache, I know where Lexi is and I know that one day I will join her there.  However, the loss is so great that hope seems mythical during the first days, months, and even years after losing a child. In the years since Lexi has been gone I’ve pondered many things about life, loss, and the hereafter.  Life took on a whole new meaning when I lost her and I don’t think people who lose children view life the same as people who have not had the unthinkable happen to them.  I think perhaps this may be why people avoid talking with me sometimes about struggles in their life.  They assume that nothing they go through can ever compare to what my husband and I have been through.  While that may be true to a degree, I understand that life still has struggles outside of the suffering I have faced.

 Unless you have lived this, you have no way of knowing.  You have no idea how precious each second with your child should be.  Cherish your children, always. You have no idea what it feels like to go home to an empty house with baby things scattered all about…and no baby. But, at the same time, I know my loss is not the same as what others may suffer.  I’ve always told myself that losing Lexi at nine months old was a blessing in many ways.  While many of you have no way of knowing what losing a young child feels like, I can’t imagine the pain of losing an older child.  I can’t imagine how much harder sudden loss would be verses a loss we had time to prepare for. I can’t imagine the gut-wrenching pain of losing a child suddenly in a car accident, drowning, or freak accident. I can’t imagine having your teenager laughing and joking with you one morning, but then gone by the afternoon.  Somehow that pain seems even more unbearable.

Lexi will always be a huge part of me. She will always be at the forefront of my thoughts. Sometimes my breath catches in my throat when I look at Drake and he makes a certain face or shows me his pouty lips. I can see her for the briefest second and it brings me joy and heartache at the same time. 

Then sometimes like today…she is all around me, reminding me that she is just fine.  I’m not one of those folks that thinks people can look down from Heaven and see what is going on here.  Heaven is a perfect place with no sadness and pain.  I feel like there is too much sadness and pain going on here for the happiness of heaven to behold.  However, my bible doesn’t tell me the whole story…and I know there are angels all around who can see what we are doing here on earth. Proof of this came today.

Just now as I am typing this a Facebook friend who has no idea that today is Lexi’s birthday or the significance of this image sent me the following photo….





Smiley faces were what Lexi loved most and they would almost always bring a smile to her face.




Simple reminders such as this let me know that Lexi is happy. In my mind, I have this amazing guardian angel who sends me these simple reminders, quite often, that she is just where she needs to be.  I just need to be patient and finish my job here before I can see her sweet face again.  I thought for a long time that my purpose on earth was to be her mama.  Many wonderful things happened in her short life despite any amount of heartache we faced.  However, I believe she was preparing me to be a warrior mama for Drake.  God blessed me with this beautiful, healthy, baby boy and I have no doubt that he has big things in store for Lexi’s little brother.


Happy 14th Birthday, sweetheart.  I can't imagine what kind of celebration you are having today.  I know it is magical. Until we meet again, I love you.














Featured Post

910 Days Later