Walking With Drake

One Mother's perspective on autism.
I'm slightly afraid that I am going to be stoned to death for writing this, but it needs to be said. Let me begin by saying that I think we all have the tendency to be toxic in one way or another.  By nature, human beings are selfish.  We want what we want, when we want it.  Most of us can control it, or tame it in one way or another.  For some of us, it's something we have to fight daily. We must decide every single day to be selfless.  For parents, in most cases, that comes naturally.  When we are given these tiny humans to raise, we suddenly become selfless in many ways.  Most of the time that selflessness comes naturally.  We don't wake up every single morning and say, "ok, today I'm going to make myself parent these kids."  "I'm going to make myself fix them breakfast, etc."  When you have children your needs go on the back burner until their needs are met.  It's natural for most people.  Others suffer from mental health issues that prevent that natural change.  Some had their own toxic parents that either made them better or bitter.  There are so many circumstances that can make or break you as a parent, I understand all that.

What I don't understand is being toxic on purpose.  You see, social media has created a whole new sub-group of selfish/toxic people.  I'm not even sure these people are as toxic in real life as they come across on social media.  Social media empowers people to do or say anything their heart desires.  It is a juxtaposition of a blessing and a curse. I've seen it time and again.  People I know personally who will jump on a thread and say all manner of things.  When I read it, I feel like I don't even know who that person is.  In most cases, it's highly unlikely that they would be bold enough to say those same things face-to-face.  In fact, I have been guilty of this myself.  Social media makes us bold.  It's much easier to type words and hit that return key than to say something so brazen in person.  What I think we easily forget is that your written words are forever.  Any text message, email, inbox, social media thread, blog, or posting on FB has the potential to stay with you forever.  Think about that for a moment.  Screenshots are forever people.  What you say and do on the internet has the potential to affect you or stay with you for the rest of your life.  People have lost jobs over things they have said on social media.  Do you know who else will be affected by your words?  Your children.  Your autistic children. Your developmentally delayed child.  Your "hard" child.  Your ADHD child.  Your child who is non-verbal.  Your deaf, blind, or any other impairment child. And yes, even your typical child.

Because I am so "aware" of autism, I see lots of toxic parenting going on in the autism community.  These parents are not hard to spot.  They are often self-centered, disrespectful of their children's privacy, emotionally reactive, manipulative, envious,  critical, blaming, competitive, and draining. I didn't make this up.  You can Google toxic parenting and get the same thing.  Now, don't get me wrong...you don't need to be the parent of an autistic child to be toxic. But, because I am in fact the parent of an autistic child, I am somewhat immersed in the sea of parents who have children with various needs. Some of these parents handle things better than I ever will, some have burdens to bear that I would never want, some have their own health issues that make things more difficult, and some need to seriously look in the mirror and realize how toxic their parenting really is.

I hate autism

This is so hard (said so often that is becomes a mantra).

I wish my child did this or that like Karen's kid. 

People need to understand that our lives are horrible. 

I feel like a prisoner.

I am so sad.

Now, I want you to think for just a moment on those words.  What if your child read them?  How would that make them feel?  I'm not saying the feelings aren't valid, they absolutely are.  I just don't understand why you would proclaim it so loudly for the world to see.  What does it prove?  Is it being helpful or harmful? 

This is so hard.  This is so hard.  This is so hard. This is so hard.  This is so hard.

I am so sick of seeing those words over and over and over! Yes, it can be hard.  No, there is nothing wrong with saying it's a hard day.  But seriously people, some folks spit out those words so often that I feel like I'm on Drake's iPad watching it on repeat.  It's driving me nuts.

And who is it helping if you say it is hard?  Let me guess, "people can relate."  Hogwash. What about your kid?  Do you look at them day after day and say those words?  Do you?  I hope when they look at you they see nothing but a parent who is trying everything they can to help.  I hope they see more smiles than frowns.  I hope they see HOPE.

Parenting a child is hard, and many times parenting a child with addional needs is much harder. I cannot deny that.  There is nothing easy about watching your child struggle, in whatever way that may be.  Some parents deal with intense meltdowns, aggression, self-injury, aggression towards siblings, children who have seizures, children who elope, children who are extremely defiant, and children who are never comfortable or at ease.  All of these are harder than anything I have dealt with on my journey with Drake.  I don't presume to know what that life is like, all I can do is learn about that side of autism through others...and I do.  Some of my closest friends in this community deal with all of those things, and more.  The kicker is, they deal with it all with grace.  They don't disrespect their child by talking about private details on social media.  They don't stand up at a loud speaker and proclaim how much they despise autism, even though I'm sure they do some days.  Do you know why they don't do those things?   Because they understand the importance of keeping their child's most desperate days private.  I've said this before and I'll say it again.  How would you feel if someone constantly described your bad days?  Not only that, they did it for the world to see.

What is more important?  Your popularity and how many people can say, "me too" or your child's dignity?  There are ways of telling your story without making your kid look like a spectacle.  Facebook isn't a circus show.  I refuse to put my kid on display for the world to gawk at at say..."Oh, I'm so sorry, me too." It's wrong.  It will always be wrong. What I will do is show you the confidence my kid has.  I'll show you his expressive face.  I'll tell you about milestones.  I'll ask you to celebrate with me. I'll even tell you about some rough times, but only if I can do it and laugh.  Why do I do this?  Because I believe with ALL of my heart that one day he will read what I have written.  He will not be ashamed of autism.  He will not hang his head and wonder if he ruined my life.  He will not read about me being sad, because I'm not. Not only him, I don't want any autistic person to read my words and feel like autism made our lives miserable.  They get enough misery from society.  Drake is my child.  No, he isn't what I expected...but he is what I have and I can't imagine this world without him and his autism in it.  Toxic parenting is a dangerous for anyone, but for autistic children the ramifications can be even more damaging.  Our children deserve to be talked about respectfully, especially from their parents. I hope you will join me.

Lexi Rae would be sixteen years old today.  I can't wrap my head around that age. What would she be like? Would her sky blue eyes still pierce anyone who looked at her?  What kind of car would she want as her first car?  Would she have a boyfriend?  Would she be sassy like most teenagers?

Grief is a very taboo subject.  Especially when it involves the death of a child.  People tend to shy away from thinking, much less talking, about child loss.  It's not that people don't care, but it's just too hard to comprehend.

Sixteen years ago today, I gave birth to a beautiful eight pound baby girl.  Less than a year later just a couple months shy of her first birthday, she was gone.

You can read more about her life/death here: Heaven Has A Teenager.

I decided when I started this blog to talk about autism and Drake that once a year I would also dedicate my blog to Lexi Rae. This is my fourth blog dedicated to her.  After all, her life was important.  And for me it still is important.  You see, her life and losing her changed me.  While I did manage to put one foot in front of another and move forward, the loss of her broke me in many ways.  I'd even say it hardened me.  It was such a traumatic experience for us as a family and rather than let it break me, I allowed it to harden me a bit as a way to survive and move forward.

Allen and I were in our late twenties when we had  her.  We did a lot of growing up in less than a year. We functioned as one person for many months, and the bond we developed during that time was unbreakable, and still is.  Caring for a sick child will either make or break a marriage, and I'm thankful that it solidified ours.  There were days when I didn't know if I could continue on with the level of sleep deprivation I was facing.  Lexi was not a happy baby.  She was sick or in the hospital most of her life and she rarely slept.  It was hard.  The absolute hardest thing I have ever done or ever will do.  I don't think many people realize what losing a child can do to someone.  I also suffered a very early miscarriage before her, and while that hurt me...it didn't change me the way Lexi did.  I held her in my arms until her heart stopped beating, and folks....that is something that will stick with me until my heart stops. You see, child loss never goes away.  The memories have faded over the  years, but sometimes, if I allow myself to go there, I can still smell and feel her. It's mind-numbing and something I've learned to block.  Those are the kind of memories that will literally put me on my knees if I allowed them to fully surface.  There is no moving on from child loss.  You just somehow learn to exist with it.  You are trapped in a juxtaposition of love and grief. You go through the motions of breathing, laughing, eating, working, and existing. Everyday you somehow do things that need to be done, but yet you're still in that moment.  The moment when you lost your child.

I've had countless people tell me over the years that I am the strongest person they know. I am not ashamed to say that I am strong. It takes a strength to make your way through grief, to grab hold of life and let it pull you forward. The hardest thing I have ever done is watch my child die in my arms, and living every day since that moment has only been by God's grace and mercy.  Believe that. If not for my faith and knowing that Lexi is completely healed and safe in the arms of my Father, I would not hold my head high and continue on.  I have kept going all these years because He has given me the strength to do so.  It was never a goodbye for me, but rather a see-you-soon.

It wasn't until years later that I realized I may want another child.  It was scary to think about.  It had been almost seven years since she died and I didn't want to suddenly be fifty years old with regrets.  Drake gave me back a joy that I didn't know was possible.  I cannot imagine this world without him in it.  Yes, he is autistic. No, our lives are not typical.  But hardly a day goes by that I don't look at him and see her precious face.  Only this time it's happy.  Drake is healthy.  Drake is full of life.  Drake, who doesn't say a word yet, fills my heart and mind with such peace.  In my mind, I didn't expect to give birth to an autistic child...but God gave me a gift when he gave me Drake.  Yes, he has challenges...but the pure joy and love of life he has far outweighs any difficulties he may face.

So it is possible to come out on the other side of child loss and feel joy again.  For me, that joy came in the form of another child.  Our story, is just one story of child loss.  One of the worst things you can do is stop mentioning the name of the child that died.  Stop treating the subject as off limits.  Do you honestly think these parents have forgotten?   They think about it every single day....sometimes every single minute according to the circumstances.  They haven't forgotten.  They will never forget.  Speak that child's name often.  Don't you realize that speaking about that child keeps their memories alive?

Today, I have a sixteen year old in heaven.  I can't imagine a birthday party more grand than the one she is having.  I love you, Lexi.  Happy birthday, I'll see you soon.

"When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you."  Isaiah 43:2 

I’ve been binge watching "Call the Midwife" the last few days. Drake likes for me to sit right beside him when he isn’t feeling well. So, I’ve been watching that while he watches his videos. It’s been nice.

One particular episode had a lasting impression on me. Many children born with a disability, way back when, were institutionalized. It wasn’t necessarily that the parents didn’t want the child, it was sometimes because they felt they couldn’t care for him/her properly. In this particular case, the parents felt immense guilt because they thought perhaps they had caused their son’s Spina Bifida. The mother was suffering from depression and the father was at a loss since then it was proper for the mother to care for the child. It was all quite difficult for me to watch, yet I realize that was a different era. 

They planned to put him in a rather upscale institution where he would have been cared for quite well. However, upon inspection and talking to a couple of residents,  the father realized that his son was worth taking a gamble on. He decided that he and his wife could do this and help their son have the best possible life.  To some, gamble, may be a poor word choice but I was rather inspired by that particular word. My eyes filled with tears because sometimes that’s what we do as parents of these different abled children, we take a gamble.

We gamble against what doctors may tell us our children can and cannot do.

We gamble by placing them in the hands of therapists and teachers.

We gamble with which therapy is best or if all the therapy is too much.

We gamble when people ask us the “outcome” because many times we don’t know. We just smile and say “he/she is doing just great.”

We gamble with a society that doesn't understand autism or most disabilities.  We are constantly fighting to help others understand. 

We may even gamble with our own feelings. I can tell you that this is probably the biggest gamble, because our children need acceptance at home before they can get it anywhere else.  

Yet, we continue to gamble.  We do it for our child.  We take risks even when we are scared to death.  I would like to think that most of us gamble with a sense of hope.  I for one have never gambled hoping that my child would be "normal." But rather, I've gambled in hope that he would be the best version of Drake.  Still, it's a gamble. The unknown can be quite scary and some cannot get past that part.  They get stuck in very bad place, much like the mother did in this particular episode.  

I took a chance many years ago, fairly early on, and decided that I would accept autism with my whole heart.  Some may say, that was a huge gamble on my part. That meant learning everything I could, talking to people who are actually autistic, and never expecting Drake to be anyone but Drake.  We've had years and hours of therapy that have done nothing but better him. By better him, I mean help him to be confident in who he is as an autistic child.  I have gambled many times in the last seven years with this child and we are still winning.  I contribute our winning streak to my constant optimism and refusal to allow anyone around him who doesn't hold onto that same hope for him. Does he have deficits?  Of course.  Don't we all?  However, he has proven over and over again that he is an overcomer.  He can and will do great things.  I believe that with the whole of my heart.  Maybe that's a risky gamble, but I cannot imagine living any other way.  I owe it to Drake to always gamble with his best interest in mind.  

It's okay to take risks and step outside of our comfort zones.  Being the parent of an autistic child is not always going to be easy, but what's most important is realizing that the child you've been given is yours.  We as parents need to eventually come to a place of acceptance. We have to put comparison behind.  We have to let go of what we "thought" life would be.  Things may not be as you had envisioned, but that certainly doesn't mean life can't be great.  Remember... there may be bad days, months, or even years....but that doesn't mean you need to stop gambling that there will be wonderful days ahead. 

I cannot tell you how many times I've heard these words since I started blogging and created a Facebook page. Of course, I haven't always heard those exact words, but rather variations.

Autism isn't unicorns and rainbows.

You don't understand severe autism.

You are in denial.

You shame other mothers by being so positive.

You shouldn't judge us because we talk about the hard times.

I don't think you understand autism at all.

I'm glad your life is so glorious, but I hate what autism has done to my child.

These are only a few examples. Sad isn't it? The world we live in has become so harsh that being positive is seen as a failure of sorts. I don't understand such a way of thinking.

I completely understand that autism is not a walk in a field of daisies on a warm Spring day. Our life is not always sunshine and Care Bears. I have never claimed any of these things, nor have I ever objected when anyone stated that caring for an autistic child or adult is easy. Raising children in general is not easy.  When you add in additional needs, destructive behaviors, aggression, self-harm, seizures, and a whole host of other issues that can tag along with autism, the road can seem quite complex and even hard.

However, as simple as it may seem, this is the life you and I have been given.  It is up to us to make the best of it.  I choose to make the best of it every single day.  Ya'll, we have really crappy days.  Some days I do not like autism.  I don't love the fact that it causes Drake to have trouble communicating his needs.  I do not love that it prevents him from doing some things that I think he would love.  But, one thing I don't do is dwell on any of that. I focus on what he CAN do and what he WILL do.  I believe in him and he knows it.  Autism is as much a part of him as breathing.  It is the essence of his personality. I cannot imagine him being any other way.  He is who God intended for him to be.  This is the child I was given.  And honestly, I never once wished for a different version.

My hopes, dreams, and prayers for him are not lost.  I don't look at him with a sense of dread and despair.  I look at him and see so much potential, hope, love, and I cannot wait to see what his future will hold.  This is his life.  His dreams are his.  When autism was introduced to our lives I didn't feel that all my dreams of a perfect child were shattered.  What I did realize was that our path would be different, not less, just different. I made it my mission to get him the help that he needed to be all that he could be.  I want Drake to be the absolute best version of himself. I want to make sure he has all the tools, skills, and confidence to do anything he wants to do.  That is my job as his parent.

I have absolutely no idea what his future holds.  Heck, I don't know what tomorrow holds.  We may be faced with new challenges or we may hit a huge milestone.  The beauty of it all is each day is a new day.  I cannot sit around and dwell on the what ifs of life.  I don't despair over the life we have been dealt, and I am very smug to anyone who treats us as though our life is less.

I don't feel like I'm missing out on life.  THIS is my life. From the moment Drake was diagnosed I had a new purpose, and I gave it my all.  I still do, every single day.

You see, life is all about perspective.  It's about finding joy in any way you can.  Yesterday was not the best day for Drake.  He had kind of rough day at school.  But last night, before bed, he came over to me on the couch and snuggled up beside me.  He covered his legs with the blanket I was using, put his hand on my face and without saying a word I knew he was happy.

My goal in the last seven years has been his happiness.  We have spent countless hours on the road going to appointments, therapies, and school.  Through it all, my main objective has been his happiness above everything else.  While I know that learning skills is important, my focus has always been making sure he is happy.  I have removed him from several situations, people, and places that do not make him happy. I will continue to do that as long as I'm alive.

So you see, when someone insinuates that I am "too positive" about autism, it offends me greatly.  I suppose most people want me to talk about every single challenge we face.  They want me to bare Drake's soul for the world to see.  They want me to explain all the difficulties he has so they can empathize with me and all my hardships in raising an autistic child. They want me to be real, and by real I mean they want me to show weakness.  People, you're in the wrong place.  I will never speak of Drake as if he is incompetent.  I truly believe that one day Drake will read the words I've written about him.  Do you know what he will never read?  He will never read that my dreams were lost.  He will never read that I was embarrassed.  He will never read that my life was ruined.  He will never, ever read that he was anything more than an absolute joy.

He won't read those things because I refuse to put every weakness or difficultly on display for the world to see. I certainly wouldn't want people to do that to me.  Can you imagine if someone started a Facebook page about your life and told every weakness and difficultly you had? Doing it to children is no different. And yes, I will absolutely speak out against anyone who shames their own children on social media.  I will speak out against it because I don't want my son to one day read the words of some mommy-martyr and wonder if I ever felt that way about him.  Please don't misunderstand me.  There is nothing wrong with telling your story.  But if you cannot speak about your children in a respectful way, then it may be best not to speak about them at all.  Autistics are human beings, ALL of them.  They deserve to be spoken about respectfully, no matter their severity level.  You can call me judgmental, a parent-shamer, or any other ugly thing.  I do not care.  What I do care about is the message that many parents choose to put out into the world.  Many times it is a message that shames their children, and in doing so...shames mine.  I will not stand for it.  I will not accept it.

I want a positive world for kids and adults diagnosed with autism.  I want them to be proud of who they are.  The message of autism awareness shouldn't be a crying mother who is in constant despair because her child is different. That is not autism awareness. Awareness is about helping people understand that differences need to be accepted. We cannot expect society to accept our kids when we continually vomit out a message of despair and shattered dreams. Acceptance starts and home, always.

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! 

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