My Son, I’ve Failed You

My dearest son,

Today, I failed you. I failed as your voice, your advocate, and your mother. Since you know me kid, if you could speak, you would probably say, ‘Oh, mama…You are too hard on yourself‘.

And, maybe I am. I just love you so much and I cannot stand the thought of the world not giving you a chance. Or learning about your disability. I cannot stand the fact that they refuse to acknowledge the real you. You have autism kid. It’s okay to say that. It’s even okay to say that you have severe, nonverbal autism and that each kid with autism is unique. And it’s definitely okay to say that you struggle because you know what buddy? Your family is right here with you. You will never struggle alone.  Nor will we ever downplay your disability, hide it or lie about it to make other people feel comfortable. Even when we feel bullied to do so.

Autism is real.

And lying about the severity isn’t helping anyone. It can’t be fixed with the snap of a finger and it really can’t be debated by people that have never met a child with autism. You want to know why kiddo? Because your disability cannot be summed up in a department manual. But despite all that, some people think it can be fixed. They think it can be made less hard with one extra hour of therapy a week or more committed parents. I just laugh. A weighted vest isn’t always the answer. A PCA isn’t going to solve all of our problems. Respite doesn’t make the emotional weight any lighter for the moms and dads.

Sometimes, in some cases, kiddos still need more. And I learned today that is where the help stops. You want to know where the gap in the system is world? It’s when families need ‘more.’ When in reality you should be able to turn to your health insurance company, county and state…that is when the help disappears. That’s a scary reality kid.

Autism is real honey. You have it. And you are amazing. I want you to know that. This is why we talk about autism in our home. We are so proud of you just the way you are. We aren’t trying to change you. We are just trying to help you. We want you to have your best life ever. And in order to do that, mom and dad need some help sometimes. We know that we can help you with certain adaptations. We just didn’t know it would be so hard to get them.

I recently met with some folks that are apparently autism experts. We talked at length about how I needed help to give you your best life. I want you to know how much time, energy, money and strength it took for me to get to this point Cooper. Time where I could have been helping you instead I was preparing for this one conversation. It was very scary buddy. I’m just one mom. I’m not special. And I feel like I am going to war for autism at times. It shouldn’t be like that.

On paper I was asking for help in the form of a tool that would give you a better life. But in reality, it had nothing to do with that. I was there to tell them how serious autism is and how it affects families. I was there to share the reality of severe autism.

Asking for help symbolized so much more for me.  It symbolized your needs. It symbolized that autism is a real disability. It symbolized just how much autism affects our ability to live our lives.

But most of all it symbolized how little some people care about families with disabled children and ultimately, the child themselves. It symbolized the isolation we feel.

I failed though.

I wasn’t expecting a full blown fight Cooper. Actually, I was shocked. I felt that it was so obvious. Autism is a neurological disorder. It ranges from severe to high functioning. I thought that once I told them about you, your rigidity, your size, your intensity, your inability to understand safety or communicate, or even walk it would be done. However, they didn’t see it that way bud. They saw a child that is fine. He just has ‘autism.’ Not a physical disability. They saw a family that was not trying hard enough. And they saw a little boy that can be fixed with more therapy. I was shocked Cooper. We have so far to go. What if I’m not strong enough kid?

You know what else was puzzling Cooper? These people have never worked with children with autism. Nor had they ever met you Cooper. These are the people that are making decisions for your future. For our life. When they said your name and alluded to the fact that your disability wasn’t a big deal and that we could just do more therapy, my heart broke. I was not prepared for the overwhelming feeling of defensiveness that I felt. That is just not me honey. But how dare they talk about you when they’ve never even met you. These people have never seen our family struggle. They’ve never seen me chase you down a street covered in sweat. Or me carrying you on my shoulder while you beat my back. They have never watched you roll and sit in the middle of a road. They had no idea what we go through.

I told them that we uprooted our family and moved to get you better care. And that I pulled you from public education to get you the best therapy. I told them how you already get 40 hours a week of intense therapy. How much more did they want you to get. And who is going to pay for this therapy because our health insurance company won’t. Nor will the state. I told them we were trapped.

Something dawned on me during the conversation.

We’ve reached the point where the help stops. We are alone with your disability kiddo. At one point when I was blissfully new to autism I thought I could always get help if I needed it. It’s spewed at parents all the time. Get a social worker. Early intervention. However, I recently learned that asking for help means more paperwork. More dead-ends. More so called experts reading statutes and laws to me. And you know what kid? Those statutes and laws were put into effect long before autism was this prevalent. And long before disabled kiddos stayed at home with their parents.

The system is broken.

I also wasn’t prepared to speak about your disability for two hours. Don’t get me wrong, I can talk about you for days and days. I am an expert in you Cooper. But I wasn’t prepared to talk about you in such a negative light. This mama sees the beauty in you and in autism. But today, I had to talk about how hard our life is. I had to tell the truth.

Would you hate me if you knew the things I had to say? Would I even be able to say the facts in front of you kid. Talking about severe autism kills me. I know people think I am embellishing. Or, if I smile they think I’m being funny. I do this Cooper because it hurts my heart so badly to say the truth. Every time I say that your receptive and expressive language is at that of a six month old baby I have to hold back the tears. It’s even worse to tell them that while you are 70 pounds and six years old you are still very much an infant. No one wants to believe that Cooper. And I want I really want to say is…I don’t want to believe it either. But I love you and I am your voice. It is my job to stand up for you and speak the truth.

And immediately after it was over I felt like a monster Cooper. I felt like I painted the ugliest picture of you. And now as I sit here feeling guilty you are sitting in front of me. Every few minutes you grab my face with your hand and shriek and smile and point to your trains on your Kindle. And that smile. There really are no words kid. It’s perfect.

Oh, my God kid I love you. Yet, I want to apologize. The world does not want to see your kind of autism. They do not want to believe it exists. And I’ll tell you why. Because it’s not always beautiful. It’s not the autism you see on television. It’s not the kind of autism that graduates from college or gets married. But yet, it’s the kind you and I live together.

I’m sorry honey. Today, I failed you.

I failed to get through to them about how hard you are working every single day just to understand this world. And how your disability makes every day activities like walking, sitting and communicating impossible. I tried to tell them how badly you want to be in the community and see the world but it’s impossible without a little help. They wouldn’t listen kid. I tried to tell them that admitting you have severe autism is the hardest thing I’ve ever had to accept because, admitting that felt like I was giving up on you. It broke me a little bit buddy. But you and I, we are fighters.

I want you to know I’m not giving up. I will not hide your disability from the world to make people feel better about themselves. We have a long way to go kiddo. If I can’t get the autism experts to see severe autism for what it is then I’m not sure what else I can do. But, we will figure it out together.

We need to change the system. It needs to change from, ‘Your child has Autism. Good luck.’ To, ‘Your child has autism. How can we help?’

I’m not hiding you. And I’m not shutting up.

I love you kiddo.

Your,

Exhausted yet determined mama