Walking With Drake

One Mother's perspective on autism.

I Can't Let It Go

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.

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  1. I understand completely what you are saying and I agree 100%. I have done my share of complaining but the complaining is not directed at my son, it is directed at the people who do not understand my child or the people/professionals who should know better. I do not go into detail about melt-downs or behaviors and I certainly share accomplishments.
    I do not morn my child.
    I do not morn my life.
    The only thing that I morn or worry continuously about is his life after I am gone. He cannot live on his own, he cannot take care of himself, he does not understand danger, he does not understand when/if someone is taking advantage of him. He has no siblings. He is verbal but communication is not always there, so he cannot communicate when something is wrong. Even though I have taken all of the steps that I can to make sure as much as possible is in place for when that time comes, he will, I am sure have to live in a group home when I am gone and that terrifies me. He will be at the mercy of strangers. I want him to be as happy as he is right now for the rest of his life. I do not want to think about him being abused, hurt or treated poorly. I don't want to think about him not having his beloved books, markers, band aids or computer. I don't want to think about him not understanding why this treatment is happening to him. This is why I write about him. This is why I tell stories about him so that maybe people will understand how his mind works and understand that not all autistic individuals are the same. This is all that I can think of - every . day . of . my . life. I love my child more than I could ever have imagined that I could love anyone and I live in terror of what will happen to him when I am not there to protect him.
    This is not not about my life, it's about his - his future.
    Although I do not agree with some of the blogs, articles and videos out there, at all. I do think we need to shine a light on the fact that everyone is not the same. Maybe not in the way it's been done recently and not in the words that were used - but we do need to see every side. We don't need to share every detail - I don't but I understand that some people do. It's sad that all of this is causing so much upheaval, there was enough of that already.

    1. Thank you, Vickie. Your words are beautiful and I feel like you and I have similar thoughts and feelings about our kids and how to best advocate for them. I was not trying to add flame to the fire with my post. But, I was trying very desperately to get a message of hope out. I feel like the recent video paints a negative picture for our kids...and us. Again, I don’t fault her feelings...I’m just sad that millions of people (the majority knowing nothing about autism) have that kind of awareness in their mind now. I’m trying my best to move on, but I’ll be honest...I’m struggling.

  2. I know you were not trying to fan the flames - I would never think that. I’m sorry I chose to get everything out of my system on your post. I agree that they way somethings that are out there and the way they are presented do paint a dark picture.

  3. Absolutely no reason to apologize. I have so much respect for you and appreciate your comment. <3