End the Spectrum

In the world of autism, I’ve found there to be a myriad of parent types. There are the parents who just want their child to be accepted as they are. There are parents who want their child to be healed. There are parents who refuse to acknowledge their child’s problems. There are parents who are great at intervention and advocating.

I could keep going.

A little while ago, there was a video of a mom that went viral. In the video, she tearfully talks about the struggles she faces with her son who has autism. She also talks about her worries and her grief. It was very moving and I loved her authenticity.

Not everyone loved it though.

In one of the support groups, she was bashed for not accepting her child as he is. This broke my heart, because her grief was ignored.

I think the hardest part of having a child with autism is carrying the grief. Unfortunately, talking about this grief can be labeled taboo. Shouldn’t you love your child just as they are – no strings attached?

I do love my son just as he is.

The problem is that the way he is inhibits his life severely. Imagine never being able to talk. Imagine never hearing your child say “I love you”. Can you? Can you even imagine that? Can you imagine watching your child bite himself until he bleeds?

I recognize that Evan’s autism is more severe than others. For many, autism is a social awkwardness that just needs acceptance. For a few, autism is a nightmare. Calling it a spectrum does not  do the disparity justice. In fact, it destroys true advocacy for these children as a whole, because they all need something different.

Someone once said to me that if their child had autism that it wouldn’t change a thing. My response?

Smile. Nod.

Say bad words in my head.

Autism changed everything. It limits us in every area of our life – spiritually, physically, financially. I grieve for these things.

I do not love my son less.

Stop stifling my grief with judgements about my child’s acceptance. No one accepts him or sees his reality more than I do.

Candidly,

Ash

When You Feel Uncomfortable…

I remember going to a pool party with mother. It was one that her co-worker was holding for their department. It was a gloriously sunny and warm day in July. We drove an hour to get there and on the way, she explained to me that some people have different sexual orientations. Her co-worker and partner were lesbian and very kind, generous, accepting and loving. She wanted me to be prepared for this experience so that I would not say something offensive (I was about 10 years-old) and would feel comfortable. We had a great time and I really loved their dogs. One even jumped in the pool!

Homosexual, gay, lesbian were never weird to me. These things were part of life and love and learning about ourselves. “Sin” was a word they used at church and one that made me feel more uncomfortable than anything related to sexual orientation. At times, I would say things to my LGB friends that I think probably showed that I didn’t always think of things from their perspective and I wanted, still want, to be better about this.

Now, as an adult, there is a new acronym LGBTQ. Transgender was not something that I encountered early in life and is something that I’m more aware of now that I have kids. Kids and friend’s kids are deciding their gender regardless of anatomy parts. I am fumblingly awkward and I know it. I want to be better and I’m reminded of my conversation with my mother and how it shaped a loving perspective. I want to pass these things, this love, to my children.

But what about my fumbling awkwardness?

To be truthful, I get butterflies in my stomach and I feel a general sense of confusion when people share. I don’t understand, but I want to understand. The other day, a fellow mom with a  transgender child shared a video interview of 3 different families and their experiences. I was amazed at the strength of these families and the various different reactions each person had. But mostly, I was struck with the way I identified with each person’s story.

I think we can all say that at times we’ve felt out of our element, confused about our identity and lacking in the feelings of belonging. I related to the children and teens who were transgender. I also related to the parents who were concerned for their children’s futures. One of my favorite author’s, Brene Brown, recently shared that “If we look for the ways that we do not belong, then we will find them. If we look for the ways we do belong, then we can also find those.” How significant this is!

We can look for all of the ways that we are different from individuals who are LGBTQ or we can look for the ways we are similar. In our similarities, we find acceptance and belonging. In our differences, we find fear. This is the choice we have – belonging or fear. Which will you choose?

To My Body

Dear Body,

I will never forget the days after my second miscarriage. Swallowing emptiness, a piece of me was lost forever. Pain and fatigue occupied my sleep and my waking. You were speaking to me, but I did not want to hear you. You had let me down. All of me had wanted that baby, all of me except you. Why had you given up? Why had you failed me?

When miscarriages happen, people say stupid things. Things like “It’s better this way.” and “It just wasn’t meant to be.” My mother said, “Your body just wasn’t up to it.” I didn’t want to hear her and I didn’t want to hear you. All of my life, you had never talked back. Now, it seemed you were screaming – screaming and whispering all at once.

The message I felt and heard was all too clear. “You have never cared for me. Why should I care for you? Why would I willingly do anything for you?”

I didn’t know what to say so I slept. I cried. I raged. I slept again. I ate. I cried. I slept again.

We never came to terms, you and I. Life slowly ebbed into normalcy. New things, different things happened. Occupying things.

I was pregnant again and this time, you didn’t give up, for whatever reason. That’s when I knew you had not really let me down. You hadn’t failed me.

Miscarriages are the way of things. They happen. No one knows why.

Years have gone by now.  We never came to terms, you and I.

I wonder, is it time? Most of my life, I’ve trounced you around paying no attention to your messages. I was taught to be that way. I chose to stay that way.

What if you were always talking? What if I had listened?

No matter, now.

What do you say today, my unknown neighbor? What mystery do you hold?