Sunday, August 7, 2011

Tantrum Time at Ikea

The other day I got confident and took all three kids on errands. We did Nordstrom Rack and Home Depot beautifully. There was a strong breeze out where we were so walking along the parking lot feeling the wind was delightful to Josh. It was strange moment of consistent obedience and happiness to be with each other. So I thought, why not? Let's go to Ikea as well. It was just across the street, we've got plenty of time left in the afternoon, and my girls love the childwatch there.

Things continued to go well. The girls were quickly dropped off at the childcare area and I attempted to go into the main showcase area to pick up one small item that I had meaning to get all summer long. Alas, it was not meant to be.

The high pitched sound of babies or young children crying or screeching is like kryptonite to my auditorily sensitive, autistic son. For some reason, the store was teeming with unhappy small children. (Later, I found out that the restaurant was having free meals for kids). Josh's body tightened up immediately. He held my hand with an iron grip. After a few minutes, he couldn't stand it anymore. He had to do what he does to defend himself and to show his great displeasure. Josh started screaming.

Now sometimes when Josh screams, it's just a very loud, "Ahhhhhhhhhhhhh", often accompanied by big tears and hitting himself on his head. At other times, Josh seems to feel that he wants to use words to yell or scream. He does not choose to use words that are specific or appropriate to the situation like, "I hate this!" or "Make them stop!" We have even tried to get him to use his words when screaming, feeding him lines like, "I don't like that noise!" However, it seems easier to his mostly non-verbal brain to just pick a random phrase from his memory and scream that phrase. They are usually phrases from songs since Josh's world and brain seem to be filled with songs and music. More than once, Josh has had screaming tantrums using worship songs like, "LORD, I LIFT YOUR NAME ON HIGHHHHHHHHHH!" It's pretty amusing, except that you are being tortured by his screaming.

This day, Josh chose to use words from a song that he must have heard on the radio (yes, I've been turning on the radio for him in the car lately because I've been feeling like if I have to listen to the Wiggles CD one more time, I might have to shoot myself.) I turn the front speakers in my van off so I can barely hear the music and Josh can get all of the back speakers to himself. SO, here we are at Ikea, with a million people around us and Josh is screaming, at the top of his lungs, "I DIDN'T MEAN TO TURN YOU ON!!!! I DIDN'T MEAN TO TURN YOU ON!!!! I DIDN'T MEAN TO TURN YOU ON!!!!" . . . over and over again, with tears and head hitting.

And the thing about Ikea is that they do this evil thing where once you are in the bowels of the stores, you have to walk, like, a mile to get out. They make you walk through the maze of the entire showroom in order to leave. It's like casinos in Las Vegas. There are no windows or easy exits. You are simply immersed in the reality of cheap furniture. This is wonderful if you are there to reimagine your kitchen. It's horrible if you are with a screaming child who is channeling a very upset Robert Palmer.

Also, most of the time, when Josh is upset in public, most people usually avert their attention out of kindness toward me. Sometimes people give me knowing smiles in a vague sense of support or compassion. Not this time. It seemed that everyone just stopped and stared. They were like a whole bunch of prairie dogs who had heard a strange noise and needed to pay attention for their own survival or something. I felt like I was in hell.

The next morning, as I was telling my husband about the experience, I had a good laugh. You know that mortified but hilarious belly laugh that comes from loving your kids but also valuing your own dignity. Ah, but parenting does not always allow dignity, now does it? At least in sharing about such mortifying experiences in good community, one can be restored and even healed.

Wednesday, August 3, 2011

Happy 9th Birthday, Joshua!

Nine years ago today, our beautiful son was born. His birth mom had not told a soul in her life about the baby that was growing inside of her. She spent most of the summer alone, hiding her growing belly at home. Her home/ family situation was such that no one noticed much about what was going on. At 36 weeks, she labored at home, took a bus to the hospital, and gave birth less than an hour after arriving at the hospital. Most courageous of all, she asked the nurses to help her to find an adoption placement situation for the baby. Someone at the hospital called our agency and our journey began.

Three days after he was born, we got a call. A Cambodian/ Laotian/ Cuban boy has been born and his birth mom has chosen us from our profile. Did we want to meet him? We hurried home from the beach vacation that we had been on and got ourselves out to the town where he was. Josh was already with his (amazingly wonderful) temporary foster family. We met him for the first time at the offices of our adoption agency.

From the first moment I laid eyes on him, I knew that he was supposed to be ours. I know it sounds hugely cheesy but it's true. He was a five pound, wrinkly, old man-looking Asian baby with a slightly yellow hue from the jaundice. But he was gorgeous. And I was so incredibly ready to be a mom . . . to this specific child.

Today he is nine years old and ninety pounds. He's gone from being vastly underweight and "failure to thrive" to being a bit overweight. He has strong opinions and has worked really, really hard to be as functional as he is. There is so much that he can do that the doctors told us that he might not ever do (like see, walk, feed himself).

The most important thing is that he knows that he is greatly loved. He knows that I'm his Mama and I know that he's my baby. Joshua is profoundly loved by the four other people in his immediate family and by a huge extended community. As I take a minute to remember and celebrate Josh's birth and how he was brought into our family, I am so grateful.

Monday, August 1, 2011

The County Fair

A few weeks ago, we had quite a fun adventure at the local county fair. We were able to get in for free through an organization that serves families with kids with disabilities. For the first hour after the fair opened, the rides were free as well.

Normally, we wouldn't dare try to do such a potentially overwhelming outing with just two adults and all three kids but, hey, the price was right, so we thought we'd give it a try. We got there extra early, like we were told, and stood in line, waiting to get in.

The interesting thing is that it also happened to be senior day at the fair so we were standing for a good amount of time under the already hot sun in a line with only seniors and groups which included many individuals with special needs. There was a large class of autistic teens from a local high school. The atmosphere was an eclectic blend of excitement and crotchetyness. My husband wisely elected to stay in the car with Josh while I kept our place in line with the girls.

At one point, the sun and the waiting got to be too much for an autistic kid behind us. He was about 9 years old, about the same as our Josh. I could tell he was on the brink of having a full blown tantrum. I could feel the panicky, desperate energy of the parents, who were trying to calm him down. I noticed that the kid's two older sisters immediately went into "helping out" mode, offering him water and candy if he would calm down. How profoundly familiar it all was to me.

As the child behind us was spiraling into a full blown, screaming, kicking, hitting, spitting melt down, an elderly woman, who was standing in front of us, said to me, "You might want to explain what's happening to your daughters or else they might be scared." I turned to look at the woman and could not stifle a laugh. It actually (unfortunately) came out as a cross between a chortle and a snort.

"Oh, they have a brother who has autism." I explained. "My girls are used to this kind of thing."

One look at my girls proved that they were not concerned in the least about what was going on. They were not scared, intrigued, or interested in what was happening behind us in the least. To them, it was as if this type of thing happened all the time. This kid having a tantrum of grand proportions was as interesting as a slight change in the breeze, almost imperceptible, especially in light of the fact that the line to their first trip to the fair was finally beginning to move.

We quickly texted their dad so that he and Josh could join us. When they did, we who were in line, were funneled into a tented area where several lines became one small, slow moving line so that bags and backpacks could be checked. This set up seemed ridiculous to me. You take a bunch of special needs kids, most of whom have sensory issues, AND elderly people, and make them move very slowly through a crowded, smelly, loud tent area. Who thought of this? I was beginning to feel very anxious that it was going to be my son's turn to have a meltdown.

However, Josh (and most of the other folks with special needs around us) did great. I think everyone was just so excited to get in. You could smell the cotton candy and the fried food. You could see glimpses of the ferris wheel. You could hear the carnivally music . . . and the line was moving, albeit slowly.

As my attitude changed from mom-anxiety to appreciation for the moment, I noticed something else. Everyone in that tent, in that line looked so human, so natural, almost organic. It was not a beautiful, Hollywood crowd waiting to get into the county fair. It was mostly senior citizens and kids with special needs. Folks had globs of sunscreen that were not rubbed in fully and most of us were already sweaty. People don't go to the county fair to dress to impress or for success. You dress for comfort and to have a good time. You are likely to just look like who you are.

I had the thought that if I were to paint a picture of a line of people waiting to get into heaven, it might look a lot like this. I know that others have pictured it as people dressed in white with shiny wings or something but, in that moment, I thought that by the time you live your life and die and are waiting to get into heaven, your appearance would probably reflect the sufferings, the humanness, and the brokenness that you had experienced as a person on earth. It would be a time to cast aside the fashion, make up and false images that cover up our true selves. We would be free to just be who we were . . . but there would be no shame. Just excitement about what you are about to experience once you get in.