Walking With Drake

One Mother's perspective on autism.
Last weekend we spent some time with two of our dearest friends.  These two friends are really the only people we socialize with that don't have a personal connection to autism, but they accept Drake and love him fiercely.  It's rare that we get to hang out with them without Drake.  But, last weekend we had the babysitter come over for a few hours and we went over to their house to just chill for awhile.  It was nice to just talk, laugh, and enjoy a carefree day.

During the course of our visit we talked about many different things.  They have always been so good about showing interest in what is happening in Drake's life.  During one of the conversations I talked about Drake and I swimming in the pool a few days earlier.  It started to rain while we were in the pool and we stayed because...well, why not.  Drake has always been fascinated by rain and wind. At one point it began raining really hard and I noticed that Drake kept going under the water.  I decided to go under myself...and the sound was magical.  It was sensory heaven.  When I finished the story my friend looked at me and said...

"Sometimes I envy ya'll so much."

It kind of caught me off guard and I turned my head kind of like a dog would when they are trying to figure out what you're saying.  I replied, "really?" She said, "yes, I really do."  Keep in mind, she didn't say those words with malicious intent. I believe she was being completely honest, but with complete admiration and respect.

From there the conversation changed, but I can't get those words out of my mind.  I have analyzed them over and over. You see, most of the time special needs parents are the ones who have an envy problem.  We envy what we think should have been or perhaps even what will be. We envy the "normal" comings and goings of life.  We envy the way people in the world take almost everything for granted.  We envy what we perceive as the easy life. Honestly, I don't envy  much anymore.  I had my moments in the beginning though, lots of them.  Because I've chosen to be a glass half full type of gal, I suppose it has helped me to see the beauty in the drastically different life we live.

So, for her to say that she envies our life...well....saying it shocked me is an understatement.

Since that day I've tried to figure out what exactly she envies.  Here are a few things I've come up with.

1.  Our simple life.  Everything about our life is simple, very little is ever complicated.   As a family, we all love just being at home together. We don't care about the comings and goings of life much anymore.  If we have to choose between going out to eat or cooking a meal, we choose to cook a meal. For this reason we turn down lots of plans.  We say "no' a lot. Has Drake made us this way?  Quite honestly, yes.  And we like it.  In many ways I believe this is why Drake is so chill most of the time.  We don't force him to do things for our benefit.  If I think he can handle it, we give it a try.  If not, you get a firm "no."

2.  Drake has zero interest in materialistic things. Hearing rain under the water is much more exciting than the latest lego set. He loves nature, wind, rain, shiny things, hugs, tickles, string, water, his dog, and only certain people.  He never asks for anything at the store. If he does and you tell him..."we have that at home," that is good enough for him. No complaints.  He never sees a toy on TV and demands it.  If we all woke up on Christmas morning and there was nothing under the tree for him, he would grab his iPad and go sit in the chair without a care in the world.  That's kind of awesome, isn't it?

3. Drake never asks to do anything outside of things we do at home. He isn't interested in sports (thank you Jesus, I don't have to sit in the burning hot sun while he tries to hit a baseball).  He doesn't complain if we don't let him do this or that..unless it has the word iPad attached to it.  He may ask to go see his grandparents, go to church,  or go swimming.   We take him places and we try to expose him to as much as possible, but at the end of the day....home is where his heart is.  Don't get me wrong, he likes to go lots of places, but there is always a smile when we pull back into the driveway.

4. Our life is easy.  Now...before ya'll start throwing daggers, let me explain.  Autism is hard.  Everyone who lives it, knows that.  Some days I count down the minutes until bedtime because I've had about all the autism I can take.  But, most days are just easy. We keep things simple. We have a routine and we stick to it like glue. Every day is kind of the same.  There may be a day or two a week that things are different, but for the most part we stick to a strict schedule because it makes Drake's life easy, and therefore ours.  Drake has an intense therapy schedule that would blow most people's mind.   Five days a week we are on the road 2-3 hours a day for the last four years.  I know that doesn't sound easy at all, but it's easy for us because it's what Drake needs.  He wouldn't be where he is today without it.  This leads me back to #1 above....because our life is so busy during the week, we love more than anything to simply be at home on the weekends and decompress.

5. I've thought long and hard about how to word this one.  I think it would be easy to envy our life when you think about how scary the world is today.  There is a pretty huge likelihood that Drake will never be addicted to drugs, enjoy the taste of alchol, steal (intentionally), or any of the other horrid things that his typically developing peers may be tempted by.  Being blessed with literal thinking helps in many ways. Drake doesn't see skin color, he doesn't know what hatred is, he doesn't know about wars and famine and death, he just lives and loves. The fears that parents of typically developing kids have will most likely never be my fears.  On the other hand, I have fears and worries they cannot imagine.

After writing these thoughts down, I can understand how our life would look less complicated in many ways.  While we have many worries, they are not the worries of the world. Living this life is truly like being in a different galaxy.  People on the outside don't always understand us, but those who do can see the beauty in it all.  It can be hard, isolating, complicated, infuriating, but also peaceful, simple, beautiful, untarnished, and freeing. But then, I'm one of those weirdos who thinks autism is cool.  I'm fascinated by the way Drake sees and hears the world.  I love the way he communicates non-verbally better than most people verbally.  I love his snarky little expressions and the way he demands attention.  I love his curiosity and his brilliant mind (a mind that I would love to live inside just once). I look at him and I'm amazed most days. If I am envied for any of that I am proud.  Autism can be hard, but loving Drake and the life he has helped us live is easy.

I can't believe you are 15 years old today.

Where has the time gone?  I'm sure it would have gone by even faster if you were actually here on Earth with us.

Drake is already 6....I cannot believe we've had him for six years.  I also find it hard to breath sometimes when I think what a blessing you would be to him.

I always dreamed of having two children.  I guess it's part of growing up as an only child.  I wanted a brother or sister, and almost had one.  She would be eleven years younger than me if mama had not miscarried midway through the pregnancy.

It's hard to think about death until it happens to you.  Sadly, it's also hard to appreciate what you have until your world is turned upside down.  I wonder sometimes if I would embrace Drake's autism if life wouldn't have taken you away from us.  I know an autism diagnosis is difficult and some children struggle far more than Drake ever has or ever will....but I can still see all the good things about autism.  I would like to think I would feel the same way regardless of child loss, but I often wonder.

I think sometimes losing someone precious to you, has a way of changing your entire outlook on life. Losing a child even more so.  Through the years I've learned to see the good in almost any situation.  I've learned to forgive quicker...and I've learned to walk away when necessary.  I have no time for the regular annoyances of life. Things don't get under my skin like they did years ago, because I have survived something no one should ever have to survive. It also makes me a bit judgmental because some of the things people complain about often make me cringe.  You don't complain as much when you've buried your child. Nothing can really compare to that, you know?

Burying a baby is the worst. I suppose that's why I'm so big on hope.  I've survived one of the worst things possible and God gave me another child...a child I never thought I wanted.  A child diagnosed with autism.  I love him fiercely.  He healed a place inside of me that was void. He gave me the hope I needed.

I still miss you, Lexi.  Every single day.  You would think  after 14 years that I may be able to go a few days.  Nope.  Laying in bed at night being unable to sleep is the worst.  Thats when the memories like to visit.  It can happen during the day as well, but I'm normally so busy that I'm able to redirect my thoughts.  Our time with you was so hard.  The constant, mind-numbing worry, and fear was literally indescribable.  You were so fragile.  You were so sick and  unhappy most of the time, yet when you smiled it lit up the whole room.  You, like Drake, were very observant and a deep thinker.  Thinking back, I should have known you wouldn't survive. Your will to live was not there.  This was not your home, and you knew it.  *Those of you who do not know the story of Lexi can read it here.*

When Drake was born, I knew immediately that he was healthy.  Because of you, my instincts are pretty intense...and the first time I held him  I felt complete peace.  I knew without a doubt that he was strong, healthy, and ready to do this thing called life.

Drake being autistic has made life a bit more challenging.  Things are different for your Daddy and I now.  We don't have the freedoms we once had, sacrifices needed to be made, we don't always get to do the things we want to do, and there doesn't seem to be enough hours in the day....but we are also so happy.  Drake has a way of making anyone happy.  He is so full of life.  He can charm the pants off of anyone, and it sometimes makes me chuckle to think about how much that would probably annoy you as an older sister.  He has come so far in six years with therapy, love, determination, and so many awesome people who love him.  I know you would be as proud as we are.  He is truly a light in our life. Our life may be different, but I feel like...in some small way...having Drake with us gives us a little piece of you.  I see you so many times in his facial expressions.  It literally takes my breath away.

Lexi, I miss you.  I hope you know that your Daddy and I love you.  It's hard being here, while you're there....but I have no doubt that I will see you again one day.  I know you are happy now.  I know  you are at peace, and that makes me smile.  Since you've been gone, so many people who loved you are in Heaven with you now.  It makes me tear up to think of the reunions I'm missing.

Happy birthday sweetie.  One more year and you'll be sweet sixteen.....I really hope there are cars in heaven. <3

I have written a blog for Lexi or about Lexi every year on her birthday since starting this blog for Drake.  I hope you'll joining me in remembering and celebrating this beautiful child who was my first love. 

The most important thing I have learned on this journey with my autistic son is that I can never lose hope.  When I think of the word autism, the word hope quickly follows that thought.

Lately, there has been lots of division in the autism community.  I know most people think that some of us should just move on from this.  I can't.  

The reason I can't move on is because of a six year old little boy.  A little boy who is non-verbal. A little boy who is fierce.  A little boy who was diagnosed with autism when he was 2 1/2 years old.  A little boy who I looked at when he was less than a year old and knew something was different.  

I knew nothing about autism then. I was afraid.  I was at times in complete despair. I cried a lot and did nothing but research for months. When I was at my lowest, I sought out a community of people who understood this journey and those very people showed me that hope goes much further than despair. Shortly after Drake was three years old I started a facebook page and found even more hope. I read stories of children who did not speak until they were six or seven years old.  I read stories of children who had severe behavior issues, that later graduated high school and held a full time job. I found hope.  Today, I'm hungry to know any and everything I can.  It has become my passion.  I'm fascinated by autism and how the autistic mind works. 

You see, there is absolutely nothing wrong with having desperate feelings.  There is nothing wrong with having intense emotions, doubts, fears, worries, and negative thoughts.  If you are a parent, it's  your nature.  People deal with their emotions and worries in different ways, and at different times.  Some keep them all inside.  Some boldly proclaim them.  Some may mask them with things like alcohol or drugs.  Some internalize them so much that they fall into a deep depression.  Some depend on their religion to get them through. Some choose joy and hope. There is no right or wrong way.  Of course, some of these choices are not the best choices.  That doesn't mean we should shame someone who may choose to deal with their feelings in a less than appealing way.  But.  And there is a big but. 

There is a problem when you as an individual use your emotions, fears, worries, and negative thoughts to spread a message that could potentially have huge negative consequences for a subtype of people.  Autistic people are probably judged and ridiculed more than most people with disabilities.  Many autistic children and adults look just like anyone else.  There is not a look, there is no marker, there is no definite sign for the world to see.  Society sees a child screaming and crying on the floor and assumes they are a brat.  They see a child flapping their hands and squealing and find it odd.  An advocate's job is to help society recognize the difference between  a bratty kid and an autistic kid. An advocates job is to educate and empower society with knowledge about autism.  They want to help the world see what they see. Advocates need to be the voice for their child and other children.  

advocate: a person who publicly supports or recommends a particular cause or policy.

I consider myself an advocate because I have a platform that allows me to publicly share information on autism.  Most of that information comes from my day-to-day care of my own child.  I also use the page to share information from others who are on similar journeys. My page is not butterflies and rainbows.  I do share the difficulties we face...within reason.  I write and share about Drake's life because for now, I am his voice.  When I share, I make absolutely sure that I am not shaming him or making him seem like a burden.  I do not share tantrums or meltdowns.  I do not share information that would harm him in any way or hurt him if he chooses to read it later in life.  I choose to share joy, milestones, happiness, and if I do share about a difficult situation I always end with a message of hope. This doesn't mean that I don't cry, have my own tantrums, lose my cool, have doubts, fears, and insecurities as a mother.  It means that I want to project a message of hope. 

In the last week I have seen many things that burden me. I have seen parents make statements such as this:

"I think it's important for my child to know what a burden he/she is.  It's called being real." 

"I don't care if my child sees what I write.  It's my life too." 

"I'm not going to sugarcoat this.  I have sacrificed so much and I hate what autism has done to my life." 

"I get tired of all the hope, butterflies, and rainbows.  My child will NEVER be able to do this or do that." 

"I hate autism" 

"I feel like my life is over because of autism" 

"My kid is not like yours.  My kid will never be able to wipe his own butt or even tie his shoe.  My child is severe and always will be." 

"Autism has destroyed my life." 

Ya'll....I can't.  I am literally shaking after typing those things.  When you have children...it's not about you anymore.  Your child, autistic or not, is yours. They can hear you.  If they can't read now, I'm betting one day they will.  I feel like the message I've fought so hard to get out there has been destroyed.  I feel like I'm living in a world with angry parents who wish every single day that they had a "normal" child.  It breaks my heart.  It breaks my heart for those of you who feel that way and more than anything it breaks my heart for children and adults diagnosed with autism.  They deserve better.  We have become a selfish society when we think it is okay to talk about our children this way, with no regard for their feelings.  Children thrive off of positive energy and affirmations of hope.  

Another thing, I don't want society to see me and think "that poor woman."  I don't want society to feel sorry for me.  Millions of people have seen the story of a mother at a difficult moment in her life.  We have all been there.  What bothers me is the message this gives to a world that doesn't have the knowledge many of us do about autism.  Society is seeing a woman at her worst.  Again, I'm not faulting her feelings....it's the message of utter despair and loss of hope.  I don't want people to feel for me.  I want people who will change policies, schools, insurance, respite care, provide housing, and do positive and meaningful work for autistics.  Autistics and their families do not need pity..they need a whole lot of hope. 

I am going to leave you with this message from my dear friend Brad Larsen.  An autistic adult who has been hurt by what has been going on the last week. 

My name is Brad Larsen. I am an autistic adult.  I am one that was told that I would not amount to anything in life, would never graduate, go to college, hold a job, have relationships, do any self care or do anything of value to the world.  I am the one that keeps proving those people wrong by a strong refusal to give up. 

People think because you cant talk that you cant understand. We understand fine but can't always respond verbally. They think you are stupid. They talk like you are not even there. They act like our lives are less than others, that our lives are not worth living. Just because its not the ideal life for someone does not mean its the same for us. 

It's fine to grieve and be scared, but please don't write the story of a person before they've had the chance  to live it. It's not all about you, it's about your child. I often fear being a burden and wouldn't want anyone to use my story as a child to gain attention.  It sends a very negative message about us. 

And that my friends, is why I choose hope.

I had a meeting with Drake's teacher this morning and something amazing happened during that meeting.  It was almost like the heaven's opened up for a moment and everything became crystal clear.  I felt this instant relief flood through my entire body.  This feeling only lasted for a second, but it was powerful enough that it took me a few minutes to be able to drive when I made it back to the car. I love his school.  Every single person...right down to the janitor knows my child by name and they all treat him like he is the most important person there.  His teacher and the rest of the staff in his special education class are phenomenal human beings.  When I drop him and Koda off in the morning, I don't worry...ever. I could never put into words what a huge relief that is. I never thought public school would work for Drake.  I heard too many horror stories and went into my first IEP last year with all my paperwork, my advocates, my therapists, and I was ready for a fight.  I never had to fight...

You see, I have been in full-blown mission mode for the past four years.  Every single thought, breath, and moment has been in high gear.  From the moment Drake was diagnosed at two and half yeas old,  I was on a mission to make his life as bearable, happy, and content as possible.  I knew he needed good, solid therapy. I knew it would be a battle to get that therapy and get him all the services he needed.  I researched, I sent emails, I made phone calls, and I prayed.  If the person I needed to talk to could not help me, I called someone above them.  This has truly been my life the past four years.  Thankfully, and by God's grace, I have been able to get everything Drake needs to help him.  There have been so many times when I've wondered if I'm doing too much, or if I'm not doing enough.  It has been a constant battle, mostly with myself to do whatever needs to be done to help Drake be the best version of himself. In the process I've become a terrible friend, someone who forgets important events, I've given up hobbies, I am more snappy with my husband, I've become a bit demanding, I need more naps,  and I'm physically and emotionally exhausted.  But you know what?  It was worth it.  Every single bit of it.  Every sleepless night filled with nail-biting anxiety, every phone call, every email...it was all worth it.

Throughout these four years I have made changes when necessary to make sure Drake is happy, learning, gaining independence, and just being allowed to be a kid.  I have pushed him to be the best he can be....but never close enough to the edge that I feared he would fall. This morning when I met with Drake's teacher we talked about many things.  Drake has been have some minimal behavior problems the last couple of weeks and I wanted to make sure we are both on the same page.  I wanted to make sure he is being challenged enough, or maybe he is being challenged too much.  Having a non-verbal child makes it so much more difficult to always know what is going on, but when you have a team of people that understand you and your child...it's a beautiful thing.

Drake's teacher and I discussed several things.  We talked about his schedule, we talked about his behaviors, social skills, communication, etc.  In the midst of all that she kept saying, "he is so bright." The funny thing is, she wasn't just saying that to make me feel good, she meant it.  He IS bright.

Drake is smart, funny, clever, very aware of his surrounding, eager to learn, charming, easily engaged, and so very happy.

Then she said these words:  "I have actually changed the way I teach and think about things because of all you've done for Drake."

That was when the heaven's opened.  People, seriously, for just that brief moment I knew that it was all paying off.  All the therapy, phone calls, long car rides, sacrifices, sleepless nights, research, fights...it has all been worth it.  Now, please don't think I am tooting my own horn.  Quite the opposite.  If anyone deserves a gold medal it's Drake.  He has done all the work.  This kid works harder than most adults in one day.  I admire his strength, perseverance, and willingness to try. However, being a special needs parent is no joke. And when someone looks you in the eye with tears in their eyes and says they admire all you've done for your child and they see it...well, I think that is the goal.  Our ultimate goal as parents is to put our children in the right places at the right times so they can shine.  Drake is shining bright.

Try as I might, I could never put into words how thankful I am.  I'm thankful to be this child's mama. I'm thankful God has given me the tools and the sass to get Drake what he needs.  I'm thankful for my supportive husband, family, and friends.  I'm thankful for Drake's therapy clinic, his ABA therapists (who have worked actual magic to help Drake), his speech therapist, and this phenomenal school he is attending.

I don't think for one minute that we aren't going to have bumps in this road. However,  today I'm sure of one thing, I may not be doing a lot of things right, but I can say with confidence that I'm a good mama.  I'm doing the best I can, and Drake is thriving.  That's enough for me.

Sometimes certain conversations stick with you.  It's usually not the entire conversation, but rather little snippets.  Somewhere in the mix of all the words the person you are speaking with says something that sticks with you. Some words stick a little more than others.  Some leave you feeling empowered, some words sting, some hurt, and some just make you think...and think..and think.

Words are powerful.  So powerful. 

A few months ago I was speaking to someone who I admire greatly.  This person was just getting to know Drake and understand him.  We were chatting about how amazing he is doing in school and how much he has progressed in a very short amount of time.  It was an amazing conversation. There were lots of smiles and I think my eyes even welled with tears.  Then she said, "sometimes he seems so normal, like you would never know anything is different."   

I distinctly remember pausing for a moment.  I imagine I turned my head a little, sort of like a dog does when they are trying to understand something you're saying to them. I think she noticed the change because she then said, "I don't mean that in a bad way." I smiled and said, "I understand." 

I do understand.  I understood exactly what she was saying.  In certain situations and during certain times...Drake doesn't appear to be different than any other child. In other words, he can blend right in. 

For some reason, I cannot get those words out of my head.  I've thought of them often.  I've thought of them so much that it's helped me to recall the times that I have thought those same words.   

He looks so normal. 

The words make me cringe. Not because she said them, because I've had to admit to myself that I've thought them too. I know for a fact that I've never said them out-loud, because saying them out-loud would make me a horrible person somehow.  

This morning while I was drinking my coffee I thought about the conversation again and decided to look up the definition. I read it probably twenty times...


Conforming to a standard; usual, typical, or expected

The first and only thing that  jumps out at me when reading the definition is 'conforming to a standard.' 

This is the struggle that autistics all over the world face daily.  They are expected for conform to a standard. Anything outside of that standard is considered different, strange, unusual, or wrong.  No one actually says that, because saying that would be awful.  Instead, we say things like, "he looks so normal when he does x,y,z." Perhaps you are like me and you haven't said it....but you've thought it.  

You know those times:

He sat in a restaurant quietly and even ate some of his meal. 

He played on the playground with some of the other kids.

He said "hello" without needing a prompt.

He sat through a whole movie at the theatre. 

He sat with us at the dinner table through the entire meal. 

He was completely engaged during our craft time. 

We went to a family gathering and he didn't become overwhelmed.

All of those things are things a "normal" kid can pull off most of the time, right?  So when our kids are able to do these things...we consider it a huge success.  Wow, look at the progress he/she is making.  But in our minds, we sometimes think... "wow, he looks so normal." 

Even typing those words gives me a small panic attack.  Why?  Because I don't want Drake to ever hear that his normal isn't okay.  All of the things I listed above, Drake has done...like the absolute boss that he is.  Therapy has  been a huge part of helping him to be able to handle himself in otherwise uncomfortable situations.  However, never once have I taken him to a therapy session in hopes that it would make him what society considers normal. I take him to those therapy sessions so that he can understand how to cope with a society that doesn't understand him. And while I have been guilty of letting words like, "that seemed normal," cross my mind.  I am sickened by the fact that my brain sometimes thinks things that my heart doesn't agree with. Being autistic is Drake's normal. Because his brain works differently than mine, that doesn't mean I am more normal than he is.  I feel like many times autistics are expected to be chameleons.  They are expected to act, behave, or handle themselves just like everyone else. It's okay for them to be different, but they need to change to suit the needs of those of us who are more typical.  

Thats why there are always harsh looks in Wal-mart when your kid has a massive meltdown because his senses are in overdrive. Those onlookers don't understand autism. They want to see the chameleon version. So what do they do?  They assume that your child is unruly and needs discipline.  

Somewhere along the way, we as a society have learned to see things a certain way.  When we see something that is different, we don't know how to respond to it.  When society sees a  six year old flapping his hands or squealing with excitement, they see a child who isn't like their child.  What they are missing is the joy. When they see a child totally overwhelmed by a situation, they choose to pass judgement on the parent.  What they are missing is the flashing lights, the echos in the room, and  the strong smells. 

While I think therapy has been crucial in helping Drake be more comfortable in  a world that doesn't understand him, I never want him to think his normal isn't okay. Normal is just a word in the dictionary.  I think it's time we all realize that normal has many different variations and learn to accept those variations instead of always searching for chameleons. 

“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

A Social Story About Drake


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 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!


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