Pasta Therapy

Tuesdays are the night that my husband regularly stays late at work. They are also the day when behavior issues in my kids usually spike. Today was no exception.

The day was long. The house was a mess. The needs were many. By the time I put them all to bed, I was unfathomably tired. Launching into the dishes, I realized that all I had eaten for dinner was a slice of melon, two pizza crusts and a random piece of candy that I found in a tupperware (don't ask). It's quite possible that I had stuffed other things into my mouth while moving at the speed of light around my kitchen but I couldn't remember.

I was about to smear some peanut butter (that was already out on the counter) onto a piece of bread and eat it while cleaning when, for some reason, I found myself chopping a random piece of garlic. I chopped a few more. Then I browned it in a pan with some olive oil and the smell of it was wonderful and soothing. Inspired, I cut up a few ripe tomatoes from my garden and put that in along with some basil and a half an onion. I rummaged around my freezer and found some frozen shrimp. I pulled out some cold pasta (some in the shape of wagon wheels and some in the shape of Scooby Doo) from the fridge and realized that I was actually cooking a meal for me; yes, just for me. Well, while we're at it, let's squeeze in some lemon juice, and a few spoonfuls of capers. I finished it off with salt, fresh ground pepper and some shredded parmesan.

Then, I did something strange and unusual. I poured a glass of blood orange soda and sat down at my dining table with my pasta and I ate it. I did not multi-task for those 10 minutes. I did not read the paper. I did not check my email. I did not contemplate my to-do list. I let the dirty dishes and Joshua's unfilled pill box just sit in my kitchen while I enjoyed the taste of my dinner. And while I just sat and ate this fabulous thing that I had cooked FOR MYSELF, I felt my own sense of value and self respect increase in my own soul.

Thinking that People are Idiots

A few days after writing my last blog post (about a very rude and out of touch man at Bed, Bath, and Beyond ) I had an interesting interaction with God. I was at a memorial service for a friend. We were in the middle of a deeply emotional and intense moment of musical worship when I felt that God brought to mind the interaction with the man with no verbal governor. Alongside the feelings of sadness and grief that I was already feeling, all of the feelings of anger and resentment toward that man (and the many people who have said stupid things about Josh) exploded inside me.

Ironically, we were singing "Amazing Grace" while I was reliving my thoughts and feelings of hating the stupid idiots that populate the planet and my life.

"Amazing Grace, how sweet the sound that saved a wretch like me . . ."

("Oh yeah, and also that soccer coach who was rude to Josh, what an incredible jerk . . . ")

A few minutes later, I heard God say to me, "Have you ever said anything stupid?"

Of course, the answer is, Yes. I know in my heart that I say stupid things all the time. In fact, just a few minutes before, during the socializing time prior to the memorial, I had said something to an acquaintance that I deeply regretted. So, yes. I have and I feel bad about it.

Slowly, the incongruence of the moment stuck me. Here I am singing about grace, supposedly worshiping the God of grace, acknowledging the grace in my friend's life. I walk around as an undisciplined extrovert counting on the grace of God and people to cover all of the unthoughtful or inappropriate things that I might say. I think God was pointing out to me that it's the same grace that covers the stupid idiot things that random strangers say about Josh. Can you believe it? Grace covers insensitive things said about kids with special needs.

I thought back to that moment at Bed, Bath, and Beyond and imagined Grace being present. I pictured the face of the man who had said those things about Josh. Though the lens of grace I could see that he was not a stupid idiot. He was a person in need of grace, just like I am. I forgave him and felt a burden lifting from my heart.

" . . . was blind but now I see."

Bed, Bath and Beyond

Tonight I took Josh on a quick errand to Bed, Bath, and Beyond. It was going quite well since there were no other children there, including his sisters. We were in line to pay for my item when Josh started happily nuzzling a big pile of pillows that were near the check out counter.

He was incredibly happy, giggling, and having a full sensory experience of the pillows when I hear someone behind me say, "What is wrong with this child?" I turn around to see a middle aged man standing there with his college aged son. Without skipping a beat, and with out being mean, I simply said, "He has autism." Just three words. There could have been so many.

The man went into full on verbal backtracking mode, rambling about how God has a special blessing for these kids sometimes and that he has a cousin who has a child with polio and that child is the most loving child . . .

I listened for 2-3 long minutes. At the end of 3 eternal minutes, everyone in line was clearly mortified. The college aged son found a reason to move elsewhere in the store. I paid for my item, said goodbye to the man and walked out of the store.

Can someone explain to me why a person would say, out loud, "What is wrong with this child?" right behind that child's mother? Even if there was nothing "wrong" with my child, I would be so offended. What is wrong with my child? What is wrong with people out there?

A Perfect Summer Day

This summer has been a tough one for Joshua and his Mama. Top 5 things that Joshua has been up to that has driven his mom crazy are:

1. So much crying for apparent reasons and no apparent reason

2. Eating lots of non-food items like rubber stamps, video tape (see previous post), toilet paper, entire pages of beloved books. He has also gotten into eating pseudo-food items that are still completely inappropriate like previously chewed gum that has been stuck to the side of a public garbage can. I'm not kidding.

3. Demanding random videos that I rented from the library many months ago. He would ask for them over and over again for hours. "Want Baby Galileo. Want Baby Galileo. Want Baby Galileo"

4. Pouring liquids into strange places (like my coffee into his toy boxes in his room). Pouring water onto floors, etc.

5. Intentionally peeing on the floor (or onto piles of clothes) in his room. This one made me the most crazy. One time he peed on a TV/VCR that was on. He could have electrocuted himself! We were way beyond this in his potty training journey but suddenly, he went way backward with this behavior.

So, yes. Difficult summer.

But I have to tell you about one day that was wonderful.

A few weeks ago, we were at a friend's cabin in the mountains for a week. One day, we rented a boat and spent the good part of a day on a lake. We explored various places around the lake, went hiking, and soaked up the glorious sun.

Of course, I was worried about how Josh would be. There's not really many places to escape if he's having a hard time on a boat. But Josh loved it. The hum and vibrations of the motor, the sound of the water, the slightly cool breeze; these things were pure sensory pleasure for Josh.

A friend, the dad of the other family who was with us, decided that this was the day to introduce Josh to hiking. Josh did shockingly well with it. We couldn't believe how hard he worked to climb up rocks and walk up hills. Josh even jumped off of a rock into the lake (with some help). He swam. He ate watermelon quietly. He even told me when he needed to go to the bathroom.

And, as everyone knows, if Josh is happy, Mom is happy. I was so happy. How I want this kid to be happy. . . from the bottom of my soul. I know that I can't control this. I have little power to make this happen. But when it does, it's so wonderful. A professor of mine once told me that "a shared joy is a double joy". I want to share with the world about one perfect summer day!

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.

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.

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.