Sunday, Bloody Sunday

Mom Says:
Moms and dads see parenting so different with a typical child. Take an autism child and expect two parents to agree and you get a divorce rate of at least 50 percent. Our marriage is still intact. But, each day we experience our autistic child in two separate worlds -- male and female. This blog seeks to show the "he said, she said" of raising an autism child. We don't seek to show a perfect example, but a real one -- ours.

If there's one lesson we've learned -- and never graduate from -- it is to not blame each other. Blame autism, blame the environment, but don't blame each other. Yet, it's so tempting.

Tonight, our family was peacefully reading bedtime stories... both parents were there, a rare thing in itself, and two kids were listening. Our oldest child with autism was sharing a book with his younger sister and it was a rare moment of family bliss.

Mom thought she had a great idea, to cut the autism child's nails before calling it a night. With that thought, I wish I could rewind the clock. Our autism child, Dylan, has such high sensory issues that things like washing his hair or cutting his nails are still a major ordeal. I say still because we have been through 5 years of his life and 3 years of intense therapies to work out things. On most days, I think it's gotten 100 percent better. Tonight, I wondered if we'd gotten anywhere.

While my husband and I both held him down to cut his fingernails, he squirmed and screamed loudly. We are used to this and in our ideal world, he just gets used to it one day and gives in. Not yet. And now we are further from it. My husband took a cut and Dylan moved too quickly and suddenly blood was spurting everywhere. We all ran to the bathroom. He screamed and squirmed even more than ever and blood was splattering all over the bathroom. He was covered in blood and both of his parents were too. Within moments the whole family had blood everywhere. It's a wonder that a small cut can produce so much blood. It looked like a horror show had hit our house.

With Dylan's limited language, we tried our best during his hysterics to explain what an accident is and how sorry we felt. All he could do is sing some memorized songs that bring him an ounce of comfort. But, then he'd see the blood and get upset and squirm out of our arms and there flew more blood. All I could see in his eyes was "how could you do this to me?" The few things he did say cut me to the bone, I felt like it was my blood. "Mom, Mom" he screamed, as if begging me to take it all away. He has so few words and yet these brought me joy and pain. The joy was that he still needed me. My pain was that he didn't have more he could say to express his pain.

My 3-year-old daughter ran in the bathroom with band-aids telling him that she could make it all better. It's one of the many screaming ordeals she's observed in her short life. Only this one was different: there was blood spattered everywhere. What a beautiful thing that she tried to help. What a sad thing that there wasn't anything I could do to make it go away for her. Mommy guilt rages, we can't take autism out of the typical kids' world either.

The blood stopped in what was probably only 10 minutes, but felt like 10 hours. I held him in his bed till he fell asleep and looked at the blood splattered all over my clothes. As I lay there, a flood of emotions came over me, why did God think I could mother an autism child? Why do such simple things such as cutting fingernails turn into such major ordeals for Dylan? Why can't I make it all go away? Why? Why? Why? The mommy in me wishes it could all make sense and I could create a world that makes sense for me and my autism son.

Dad Says:

When my wife says nail cutting time, I think of all the nasty things done to me over the years. Of all the bullies, the nasty teachers, and bad bosses, cutting an autistic child's nails beats them all.

On the best day, cutting my kids nails is one of those chores that you never finish. You know, like an assignment from the Hades foreman, after a really nasty life. But it's not. It's the day to day. And the really horrible thing is, it must be worse for him.

Here is the play-by-play. The second my kid sees those shiny nail clippers, he tenses up. Then he comes out swinging. It wouldn't be so bad, but he has these comic-book strength nails. With dirt caked under them. From experience I know that anything this kid scratches is going to be infected. Like my face.

So I get my wife to hold him down. Half-heartily, she gives a hug to the now screaming child.

"NO NAILS!" He yells, as he flips around in my wife's loose arms. Then, out comes the business. My wife pulls out these monster clippers, for toe nails and talons and such. These are the only two things I have to cut his nails.

I have to push his arm against the bed, then move his fingers out. This is the only way I can get his now-wet-with-perspiration hand flat. It is the only way I know how to cut his nails. It takes all of my hand strength to hold and cut. My son uses his other hand, and his feet, to keep me from bringing the nail clippers closer to his nails.

The first nail goes well. After a kick to my face, so does the second. The third nail, well, that's where the pleading to "hold him down" reached deaf ears. His sweat soaked hands slipped and I couldn't hold him.

"Clip." Went the clippers into soft flesh.

There was a brief second of silence. It was broken by the phrase, "I'm trying to hold him." Then screaming. And blood.

Bandaging an autistic child is really difficult. He kept trying to keep his hands clean by waving them back and forth. Even though it was a little cut, there were droplets all over the white bathroom floor. My three year old calmly brought us the bandages.

After about an hour trying to hold him still, for a very minor cut, we were able to bandage him. Then he kept trying to tear the bandage off. I looked at my wife. Her white shirt was ruined. She had blood on her face.

"You put her to bed, and I will stay with him." She said.

My daughter wasn't affected by any of this. She did cry, but it was for her kitty cat. She can't sleep without it.

'At least one person is normal' I thought.

After he went to sleep, the blood was cleaned up off of us and the bathroom, my daughter was crying. She had thrown up. I assume it was stress.

All this came from cutting fingernails.