Windows of Hope

She Says:

There are moments in raising a child with autism that you see a glimpse of normalcy, that you feel a part of the "other" parents and that you enjoy a typical child moment.

Last Friday was one of those for me.

My son had a Kindergarten Fairy Tale Ball. I was dreading it. Even a typical boy doesn't find dressing up as a Prince very enjoyable. It's not really their dream like a girl dreams of being a Princess. I had chased him around the house a few times begging him to try his Prince cape or crown on to no avail.

Earlier in the week, his teacher had called to say "How badly do you want Dylan to participate in the Ball? He's not too interested in the practices." It's one of those constant dilemmas you face in raising an autistic child: do you force them to fit in or allow them a break? I of course opted for the first choice and replied "If he's acting up in practice, then he shouldn't be allowed out of it."

Thank goodness I was right. I could have been dreadfully wrong. Often I am.

On Friday, Dylan walked into the Fairy Tale Ball in full costume. He was all smiles to see his mom and sister at school and put on an amazing performance. He sang with the other Kindergartners and danced with them. He gave hugs to fellow classmates and even held hands with the girl dressed up as Scarlett O'Hara.

Scarlett O'Hara's (aka Noelle)'s mom e-mailed me a thank you... she thanked Dylan for being such a good friend to Noelle. I never dreamed my son would get a compliment like that. I felt like jumping up and down too. Noelle and her mom made us all feel normal... for a moment.

The Highs

Every now and again, in the race to "fix" your child with autism, you get a breath of fresh air. Your child does something you've worked on for years all on their own. They initiate a conversation. Or answer your question without prompting. Or they just plain mix in with typical kids. A typical weekend, I guess that's what we had.

Dylan's Kindergarten had a Fairy Tale Ball this week instead of kids dressing up for Halloween. On Monday, I get a call from his teachers complaining "Dylan really doesn't participate in the song practices on stage, he runs in circles during the

Friday night our church had a Trunk or Treat. At first, I thought, a huge crowd of people mixed with an autism child equals royal nightmare. But, like anything, I pressed on to the activity. We pulled

Church

He said:

Church and autism; hot oil and cold water.

Try to convince an autistic child to put on Old Navy underwear instead of the favorite Blue Fruit of the Looms. Try to put the rest of their clothes on. Feed them, and try stuff vitamins in them.

Then tell him that he is getting ready for Church.

Watch the clothes come off, the breakfast get thrown, and your eardrums fall out and die ten feet from you.

If there was ever a time to put a camel through the eye of the needle, it is 45 minutes before church.

Saturday Chaos and Rule Breakers

She says:

Saturdays can be so confusing for an autism child. Each one is different and no two are alike. Parents are usually rushing to do chores or play and don't want to be on a schedule or a routine. This particular Saturday, I insisted we go as a family to a pumpkin patch.

This is where the rule breaking part comes in.

My son with autism had shown no enthusiasm at the pumpkin patch. He wasn't responding to us in any way. He seemed like he'd rather take a nap than look at animals or pumpkins. We'd ask him to smile for photos and it all seemed like a huge effort on his part. Nothing was sparking his interest. He was unresponsive in every way today.

That is, nothing, until he spilled his water bottle on a goat and the animal jerked away and stuck his neck back out. Dylan continued to pour water on the goats and they'd jerk away and he'd crack up laughing. My sister asked, are you sure this is behavior you want to encourage? I wasn't sure, but it was the first time that he had responded to anything all day. So, I had to continue watching. A few other boys near the goats started to laugh with him. Soon, all three boys shared water bottles and threw squirts at the goats. It was our first sign all day of human involvement and we were thrilled.

Another mom was not so thrilled, she stormed over and yelled at my son, "that makes me very sad when you hurt the goats!" I wanted to yell back, do you not see how alive my son? He has a glow in his eyes and is laughing with other kids! But, I knew she wouldn't get it.

You see, autism moms, are a rare breed. We celebrate when they lie -- that means they understand language in a complex way. We cheer when they fight with other kids or siblings -- that means they are interacting and sticking with the kids. We let them jump all over the couches and beds -- it's a cheap form of OT therapy and usually keeps them involved with other kids. We'll do anything to keep their attention, bring them out of the cloud or fuzz they live under. We have a strange set of rules to live by.

Tolerance in Texas

Today we tried to squeeze every moment in with the kids.

Waking up at 5:30, we ran those kids until bedtime. It was a basic Saturday: shopping, move more stuff to my sister in law's apartment, and go to see farm animals. We do this nearly every Saturday. It more or less makes my son look normal during the week.

In addition to working with an autistic son, I made the mistake of buying a home with a lawn. This means that any free time must be spent away from my family, work, and the blog, at Home Depot.

So, my son and I went to Home Depot. The part my autistic son cannot take is being in line--any line. He gets so anxious he shakes, screams in an ear piercing high pitched voice, and goes limp on the floor. And a line is the only way to get out of Home Depot.

Standing next to me, was a woman who looked tolerant. Her hair was cut short. It was colored white, yellow, and what once must have been puce. I think there were some dark roots, but I really can't be sure. Her shirt color kind-of sucked all the light from her pale-snow like skin, but somehow made her florescent yellow skirt and high heeled black boots stand out.

To me, this look screams tolerance. In nature, when an animal has these colors, it means "avoid".

Before introducing herself, she told me how her kids were almost worse than mine. I let her know that my son is autistic, that he hates lines, and I thanked her for not minding the outburst. Then comes the line that I have heard so many times.

"You know what I think it is..." she began.

And before I could say "No thanks, I can do with out that knowledge." I get to hear this line, once again.

"It is in the mercury in the immunization shots." We all have lines that we hate. That one is mine.

I don't know why my son is autistic. I don't care if it is mercury, or the inability of his immune system to fight off allergies. The likely cause: that is the way he is. That is the way A LOT of kids are these days. I love him and my daughter--who is not autistic--exactly the same.

If there is a miracle cure, I'll take it. I will take anything that won't harm my child. The last place I expect to find an answer to why my child is autistic is in a shopping line.

Still, I appreciated her ability to not give me that "why can't you control your kid" look.

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.