Walking With Drake

One Mother's perspective on autism.
Let me start this blog off with a bang.  If you're one of those folks who hates Autism, this probably won't be the best read for ya.  Then again, I invite you to open your mind up and let go of some of that bitterness.

You see, I've been on this journey with my son for almost five years.  Drake recently turned seven, and he was diagnosed with autism just a few months before he was three. You may think..."wait, that math doesn't add up."  That's because I knew way before his diagnosis that he was autistic.  I'm one of those paranoid mamas and my instinct is almost superpower level in strength.  Folks, I was a literal basket case the first time I ever Googled anything about autism.  Why?  Because I didn't understand it.  So, from the time Drake was around ten months old, until he was eventually diagnosed with Autism around 2 1/2 years old, I was literally a nutcase. In fact, I should probably have a PHD on my wall based on all the research I did those two years.

I didn't tell a soul for several months of my suspicions, not even my husband.  I wanted to make sure I had all my facts straight.  I wanted to understand things myself before I presented the idea to anyone else.  I was scared out of my mind.  I read all the articles about people curing their kids with these magical biomedical treatments and special diets.  I read stories of children who suddenly didn't have autism anymore.  I read about the horror of some therapies. But, one day I stopped reading and had a plan of sorts.  Drake needed a diagnosis and Drake needed therapy, those two things I knew for sure.  I also knew that Drake was always going to be autistic. Always.  There is no magic pill.  There is no special food that will change him.  He is autistic and always will be.  It wasn't very hard to accept.  It was a fact and I accepted it as such.

Those first few months after diagnosis were life-changing in many ways.  I realized I could no longer hold a job and get him the kind of help that he needed.  I realized that everything about my life before was not going to be the same.  Instead of signing up for T-ball, we were signing up for Speech, Occupational, and ABA therapies. It didn't bother me, it just became my mission.  I'm not a baseball or soccer mom...I'm an autism mama.  I eat, sleep, and breath all things autism.  I wanted to know anything and everything about it because it is such a huge part of my son.  I wasn't sad about it, I was determined.  Determined to make sure he received the best care, the right doctors, the best therapists, and more than anything acceptance.

So you see, when people send me videos, articles and thoughts about how to cure my child...I am offended.  Drake doesn't have cancer.  He is not dying.  He is not sick.  Drake is autistic.  His brain works differently, and my friends that doesn't mean he is diseased.

I've found a way to take this bull by the horns and win.  And that way is through acceptance of my son. You see, joy doesn't need a cure and when I look at Drake I see joy.  He is happy being who he is.  You cannot have any joy or peace if you can't accept your child for who they are. I don't care how many supplements you pump into your kid, or how many oils you rub on their body...if that child is truly autistic they will ALWAYS be autistic.  If some medication, supplement, or therapy helps your child then HOORAY!  I'm happy for you and I'm sure your child feels better in their body.

I'm not a cave man.  I understand that some people diagnosed with autism need lots of help.  I understand that autism affects my child differently than it affects a lot of children.  Your child may be higher functioning than mine or mine may be higher functioning than yours.  You know what though?  They are both still autistic.  I'm not envious because my friend's child is higher functioning, their child is not mine.  God gave me this child.
I am in full agreement that some may need special diets or  all sorts of medications and supplements to balance their body  In fact, Drake takes several supplements.  They make him feel better.  They make him feel more at ease.  What they don't do is take away his autism.  I have zero desire to make Drake non-autistic.  If someone showed up at my door tonight and said, "If you give your son this pill, he will no longer be autistic."  I couldn't do it. I don't know what kind of child I would get in his place.  I don't know who he would be.  Maybe that makes me a moron, I don't know.  I just don't look at autism and see it as demonic.
Autism has not stolen my child from me.  Do we have hard days?  Absolutely.  I would love to take away Drake's frustrations, anxieties, and struggles.  But, not all of that is autism.  Some of those things come from co-morbid conditions such as Apraxia of Speech and anxiety disorder.  If someone offered me a magic pill for Apraxia of Speech I would be all over it.  Drake wants to talk.  He wants to verbally express himself.  You may say, "well, whats the difference...if you would cure one, why not the other?"  Because autism makes him who he is. His personality, his quirkiness, his humor, the way he observes things, his honesty, literal thinking,  the way he thinks, sees, and feels are all traits that I love about him and autism. I am not bitter about autism and what it has "done" to my child.  It's who he is, it's part of him.  Taking away autism would take away the Drake that I and so many others love.

One thingI have learned on this journey is to listen to other autistics.  I've spoken to many and almost 100% of them have told me that they are proud to be autistic.  Yes, some of them have other medical conditions that hinder them greatly, but it's not autism they complain about.  And I'll  tell you this, you "cure people" hurt them with your words.  Your words make them feel unappreciated, unaccepted, unloved, and unnecessary.  That's a hard pill to swallow isn't it?  But, it's the truth.

Those of you who want "normal" kids rather than the ones you were blessed with are damaging to the autism community.  Not only that, you are working so hard to fix your kid that you're missing out on some amazing opportunities.

You're missing out on:

Watching the trees in the wind.

Listening intently to the birds.

Being at peace in the forest where there is little noise.

Finding joy in a colorful piece of ribbon.

Noticing the texture of something new.

The way water feels on your skin.

Hearing rain underwater.

Being able to completely ignore people without a care in the world.

Very little interest in the material world.

The simple life.

Loving and being loyal to a select few.

Joy that is indescribable.

All of those things above are things I've learned from Drake.  He is very in tune with his senses and often awes me with things he loves.  More than anything else, I've learned to stop comparing Drake to other kids and just enjoy who he is as a human being.  Yes, I have worries that are far more intense than what normal parents face, but I also have immense peace in knowing that Drake is happy.  I'm thankful that I've always kept that as a top priority when speaking to people about Drake. "I want him to be happy."  That is how I begin any conversation with a new therapist, his IEP team, or a doctor.  His happiness is what drives me. Again, joy doesn't need a cure.  I've chosen to see the joy in this life with Drake.

If you are struggling with acceptance, know this...your kid feels it.  If you want your child cured, even if you haven't voiced it to them, they know.  These children and adults are not rocks.  They understand what you are saying, feeling, and how you portray them in the community.  If you want joy on this journey you must accept them.  They will grow by leaps and bounds once they know that you believe in them  AS an autistic person.

I invite you to accept autistic people.  Help them be all they can be by encouraging them and  helping them along the way.  If I had to guess, they will help you far more than you will ever help them.

This is the question I get asked most often about Drake.

The simple answer is, I don't know.  Along with autism, Drake also has an Apraxia of speech diagnosis.  Apraxia is much more complicated than many people realize.  While therapy is available, it's still somewhat of a mystery.  In short, there is no way to know for sure if the muscles of the mouth and the brain will learn to cooperate effectively. Sometimes they do, sometimes they don't. I will say that Drake has a severe case of Apraxia.  On top of that, Drake is an absolute perfectionist and doesn't want to do much of anything unless he can do it 110%.

Drake was diagnosed with autism at 2 1/2 years old.  At the time, lack of communication was the biggest red flag.  There were also other red flags such as: lack of eye contact, appearing deaf, little interest in toys, odd fascinations, and various aversions.  As someone who knew very little about autism, I was most concerned about his lack of verbal communication. In the last few years, I've learned so much, therefore, my feelings have changed quite a bit.

If you look at the research, statistics, and listen to most healthcare professionals...most of those things will tell you that our time is running out.  The window of opportunity for speech development is rather low at this point.  Drake will be seven years old in another month.  According to "science' the likelihood of him ever being able to communicate is almost at zero.  But you see, I don't rely much on  what "they" say.  I choose to hold onto hope. I'm one of those, "your will be done, Lord."   On the flip side, I'm not in denial about it either.  He may never be able to verbally communicate, and I can say with confidence that I'm okay with that.

Cue the 'gasps.'

Maybe I'm crazy, but it just isn't at the top of my list of priorities anymore.  You see, even if Drake does find his voice, he will always struggle with verbal communication.  At this point of the journey, I have given him as many tools and ways to communicate that I possibly can.  He has always been persistent when it comes to getting what he wants.  He may lead by hand, he points (that didn't come until about a year ago), he knows a few basic signs, and he has an AAC communication device.  All of these things help him to communicate his needs.  Sure, none of these things are as "easy" as verbal communication, but it sure makes it easier for him.  Plus, in this age of technology, he will one day be able to type/text, etc. I'm content with that.

Do I wish I could hear him say "mama?"  Of course I do, and I have a couple of times.  Drake has spoken several words randomly over the course of the last few years.  Mama, Daddy, iPad, Hug, No, Yeah, Yum, and more.  The words are all there. In fact, his receptive language is literally astounding.  He has always been a listener and a thinker.....I think it would be scary if we actually knew all that he has to say.   The thing is, he will be able to tell me one day.  It may not be verbally, but because of technology...one day he will be able to tell me whatever he wants.  It's exciting to think about it.

In many ways, I've learned that verbal communication is overrated.  Drake has taught me so much on this journey, but the number one thing is to listen with more than your ears. He has taught me to be more observant, more patient, and shown me a level of love that I didn't know existed.

When I tell him I love him, many times he will put his face next to mine and nuzzle.  If I ask him if he loves me too, he will reply with a nod and sign, "mama." Ya'll, it gets me every time.  I don't need to hear the sound of his voice to know he loves me....I can feel it.

My hopes and dreams for Drake are so far beyond verbal communication.  What I want more than anything is for him to be happy, gain independence, and continue to be confident in who he is.  None of those things require him being able to verbally communicate.  I'm not giving up hope that he may one day find his voice, but I'm also not going to despair if he doesn't.  One of my goals in this parenting gig is to make sure this kid knows that he is amazing, loved, and capable of anything.  I never want him to think he has failed or isn't good enough because he can't verbally communicate.

So when someone says, "do you think he will ever talk," they may hear a sigh from me...especially if he is in the same room.  I understand their concern, but I am also frustrated because being able to blab out a bunch of words doesn't make you a more complete human being. I wish that people would look at Drake and see more than a deficit.  I wish they understood that he is smart, funny, happy, and content being who he is. To me, those things are far more important than words coming out of a mouth.

Will he ever talk?  Only God knows that for sure.  My job is to love him and encourage what he CAN do and leave the rest to the one who knows.

Every year since Drake began private preschool at age 3, I have created a social story for any teachers or staff who may be working with Drake.  

Last year's  Kindergarten social story was quite extensive because I was a total basket case and beginning public school with a non-verbal child is absolutely terrifying.  However, if I could have hand picked a school, teachers, and staff to work with my child...I would have picked all those people.  

This year, Drake will be surrounded by many of the same teachers and support staff.  However, he will be joining the regular education children throughout his school day for lunch, recess, and electives such as art and music.  Of course, he will have Koda with him and his 1:1 support. I am all about inclusion, but I don't believe it should be rushed or forced.  As Drake is ready, he will be spending more and more time in the regular education classroom.  But, not until he is ready.  I think that is the beauty of this school.  They do what is best for each child and know exactly what inclusion should look like.  We are blessed to have educators and staff who really get it.

I am quite proud that I don't feel the need to write a ten page novel to the teachers and staff this year.  I'm sure they are thrilled as well. 

Dear teachers and staff, 

We are looking forward to another great year!  I am once again trusting you to take care of Drake and make sure he is protected, loved, and challenged educationally.  As most of you know, Drake is non-verbal.  However, this certainly doesn’t mean he doesn’t understand language, emotions, or has an inability to learn.  He has amazing non-verbal communication skills and also has his AAC device (please always give him access to his words).  Last year, I took Drake to school having no idea what the year would bring.  I can confidently say that it was everything I wanted for Drake, and more.  Mainly because each person who worked with Drake had his best interest in mind.  Thank you, thank you all.  
I have included some information about Drake below, information that many of you know already. Koda is also an important part of Drake’s day. She is a constant in his life, helps tremendously with anxiety, and has helped him socially.  If anyone needs training, has questions, please let me know. Feel free to share with anyone who may be new on his team this year.  
Most importantly, please keep me informed on how Drake is doing…both good and bad. Remember, Drake cannot tell me how his day has gone. I need to know if things are okay, for my sanity. I have no way of knowing if someone was mean to him, if he made a new friend, if he mastered a goal, or if he ate all his lunch….unless you tell me.  I will keep a communication notebook in his bookbag, just like last year. Please communicate with me there, by phone, text, or email.  

Here’s to a great 2018-2019 school year.  You all are appreciated and loved so much already! 

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.

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