We Are Not Alone ~ Guest Post

My friend and I had our babies five weeks apart. Three years later, I was driving home from work when she called to tell me that her son had been diagnosed with Autism. In the two years since diagnosis, they have walked the path of grief, acceptance and advocacy. They are so brave.

One day she told me she was done with people who didn’t get it, were in denial or tried to change the topic. “This is our reality. There’s no more question. If people can’t handle it, I can’t handle them.”  It was a hard moment. But she was telling me to get in her space. The journey had changed from diagnosis to treatment and there was work to be done. 

In honor of Autism Awareness Month, we are pleased to welcome her to our blog.

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I am a 39 year-old married mother of a 4 ½ year old son with autism. He is my only child.

The first question people ask when they hear my son has autism: “Is he like mildly or severely autistic?” They need a label. I have been asked, “Is he like rain man? Does he sit in the corner and rock? Or is he just a little odd?” Maybe knowing the severity of the autism determines the kind of support they will give? Maybe the response determines how they are going to feel about my son’s autism?

The question of severity is almost always awkward for me. What do I say? How much detail do I give? Should I tell them my son uses echolalia (the involuntary and immediate repetition of words or sounds made by other people)? Do I say he uses scripts from his favorite TV shows to communicate? Do I share that he didn’t sleep more then 2-3 hours in the first 2½ years of his life and that his receptive/expressive language is at a 2 year-old level? What would you say if it were your child?

Should I say he is moderately to severely autistic? My son has been assessed by multiple neurologists, psychologists, ABA therapists, ABA supervisors, two primary physicians, OT therapists, PT therapists, special education teachers and speech therapists. Not a single one of these highly trained professionals can or will answer the question of severity, so how can I answer it?

The reaction to the “label” or description of symptoms will indicate how the rest of the conversation will go.  Keep in mind I am talking about colleagues, friends and even family members. Some people make me feel loved and supported, while others leave me feeling isolated, frustrated and alone.

The following are some comments I HATE to hear the most:

• “God only gives you what you can handle.” OK, but this is not helpful when your heart is broken and every day feels like a struggle.
• “There’s a reason for everything.” I am a very spiritual person and I do feel there is a plan. However the comment feels lazy and makes the other person feel better.
• “Your son is so lucky to have you.” I can’t pinpoint why this one hurts, but it does. Maybe it’s because I am the lucky one? No matter how hard this journey gets, my heart overflows with love and gratitude for my beautiful baby boy.
• “There are so many therapies now and things you can do for those kids. He’s going to be fine.” These words minimize the whole experience in one swoop.
• “Oh that’s no big deal, my kid does that.” UGH. No, your kid doesn’t do that. I want to say “Really? When you ask your child the most basic of questions, do they have the ABILITY to answer you? Are they 4 ½ years old and still in a diaper? Are you able to take them to a family party without your child going into an anxious frenzy that requires two days of recovery? Do they echo back everything you say?” I could go on and on. When someone says, “Eh, my kid does that” my heart drops. The subtext of the comment is, “Yeah, what you’re saying is no big deal. Stop whining. I don’t want to hear it. You’re a drama queen. Get over it.”

And sometimes people say beautiful things, but if it’s delivered with a “just stop whining” implication, then the words hurt.

When people make comments that sting, I remind myself people do the best they can. However, that person and their poorly thought out comments create a palpable distance. I slink away from the relationship. I realize it is my job to make that person feel better about my child’s disability. And trust me, I don’t have the time to make you feel better about my child’s struggle. At one time I did and said anything to make other people feel better about the autism, but now I have no time for that nonsense.

Here is a list of things I find most helpful:

• “We love you and we are here for you.” Coupled with a hug, I LOVE this one!
•  “Is there anything I can do to help or make things easier?”
•  “That sucks!” A heart-felt “That sucks” does wonders.
• “This must be hard.” YES it is, and your acknowledgement of the challenge means the world to me.
• “It sounds like you guys are doing a good job.” Please know this means so much because every single day I worry I am not doing enough or more so, that I am not enough.
• “I can’t imagine how hard that must be.” Thank you for being honest, because the truth is that unless you live with a child who has special needs you do not know what the experience is like. Your honesty is refreshing.

The most loving, helpful responses are from people who communicate to us they are simply willing to be a witness to our family’s journey and struggle.

They don’t look away because it’s too painful. They have a willingness to sit with the pain we are feeling.

They put their arms around us and tell us we are not alone.