Managing Millions of Meds

A snapshot of the various meds that Joshua uses on a (mostly) daily basis

My son is a medically complex guy. Part of his brain disorder means that his pituitary gland doesn't work well. We give him pills and a shot every day so that he will have the hormones that his body needs but does not naturally produce. It turns out that having your hormones off-kilter means that there are a lot of random other things that can go wrong with your body. I'm not sure if Josh's plethora of other medical problems come from his hypopanpituitarism or just because he's a complex kid. All I know is that I made a list of his medical doctors the other day and this is the list that I came up with:

Pediatrician

Opthalmologist

Endocrinologist

Neurologist

Gastroenterologist

Ear, Nose and Throat specialist

Sleep Disorders specialist

Dermatologist

Urologist

Allergist

Psychiatrist

Additionally, most of these specialists are seen at our local Children's Hospital, which is a world class hospital but also a teaching hospital. This means that each specialty clinic has a team of attending physicians and a group of residents and fellows that often see, follow, and manage meds for Josh. This means that many of these specialties has at least 3-5 different physicians that I interact with.

It's definitely been a brain stretching experience for me to learn to manage all of Joshua's medical needs. In fact, when I think about the reality that this is what I do (almost always) accurately and successfully every day, I am impressed. In college it took all the skills I had to keep track of my own purse and backpack. I've never been a detail oriented person. It was a joke among my friends about how messy my room was and how I was always forgetting things. I guess you do what you have to do and stretch how you need to stretch to love the people that God has put in your life.

Adoption is Natural

We had a funny moment today at the supermarket. The girls and I had zipped over to pick up a few items before Josh's bus was due to arrive at home. To "help" the girls to be cooperative during the short time that I had to pick up Josh's meds at the grocery store pharmacy, I gave them sugary snacks. By the time we were at the check out counter, they were very energized, outgoing and . . . effervescent!

The cashier noticed that they were calling each other "sister" and asked if they were twins. When I said, "No, they're a year minus three days apart", she said, "Yeah, they don't really look much alike". I don't usually do this but I offered the information that, "in our family, two of our kids are adopted and one is biological". Upon hearing this, Hope started loudly spouting, "I'm adopted! I'm adopted!" Not to be outdone, Anna began loudly saying, "I'm not adopted! I'm from my Mommy's belly!" It spiraled quickly into a game of who could talk faster and louder and they soon erupted into a chorus of giggles.

Adoption is pretty normal in our family. We've worked hard for it not to be a strange, secret, or shameful thing. By now, it's just a fact of life. Hope has a birth mom that's not in our family and Anna's birth mom happens to be the same person as her mom. "We're all different!" is our family mantra. Everyone in our family has a different ethnic composition. Being different is normal.

Actually, since my husband and Josh are also adopted, the adoptees are the majority in our family. Anna has had her struggles with NOT being adopted and has voiced that she wishes that SHE had a birth mom outside of our family who took her out to ice cream. I've tried to tell her that I am both her mom and her birth mom and that I could take her out to ice cream. She informed me that I don't count. (So much for 27 hours of labor and then giving birth to a 10 pound 3 ounce little girl.) She also wishes that she had an adoption agency that gave her a special teddy bear like Hope and Joshua's agency did.

I'm sure that the struggles will change over time but I hope that they will be based on a foundation of safety and security in being loved.

My girls are getting to be better friends as the days go by. Sure, they still fight and whine but they are very close. I love to hear them talking after I have put them down for the night. I listen in as they debrief their days, talk about school, and even quietly sing songs together.

They pretend to have a secret language that only they can speak or understand. They make each other laugh A LOT.

I also love that Hope and Anna share a bond with their brother. Each in their own way, they have such a natural love for their brother. Anna is often concerned about Josh's safety. Hope gets very angry if we chastise him. If we are driving in the car without him, one of them will inevitably ask, "Where's Josh" or "When are we going to pick up Josh?" He is an important part of their world, even though he doesn't do a lot of the things that another older brother might do.

I love knowing, with absolute confidence, that God has brought our little brood together. We are held together by a bond that is stronger than blood.

Sometimes, Things Just Don't Work Out

Soccer Mom. Part of me disdains that term because it makes me think of being part of a "demographic" that politicians target. I want to say, yes, I drive a minivan and I live in suburban America but don't peg me as just a "soccer mom". I'm about more than just the activities of my kids, you know. Don't define me by what my kids do. Blah, blah, blah.

However, truth be told, part of me wants to join that club. Deep inside, I WISH that I had to schlep my 9 year old son to practices and games all around town. I want to be able to complain that he "is eating us out of house and home because he's so active all the time!" as some other moms do. It would be nice to have to get to know a whole team full of other boys who run around and get really dirty and sweaty together. I would bring healthy snacks and maybe have some of them over for playdates (or is it called just "hanging out" when you are 9 years old?).

Alas, team sports is a universe away from where my son lives. Josh is still a one to one kind of guy. He needs a parent or an aide with him for any activity. Otherwise, he could wander off or spend hours walking in circles or spiral into a long session of crying and screaming.

I had resigned to never get a chance to be a soccer mom until my girls were older. Until I heard about AYSO VIP soccer. It's a branch of AYSO that's specifically for kids with special needs. I checked out the website and it said that they have individual volunteers for each kid who needs a buddy. It was also very local and free. I decided to check it out.

The first session was awesome. All of the team members got free, bright green, matching uniforms. The older special needs kids have been doing this for many seasons and had a lot of enthusiasm and team identity. After warm ups, they began with a team cheer, "Ho, Ho, Ho Green Giants! Yeahhhhh!!! " Several kids with Downs Syndrome were ablaze with excitement and enthusiasm, bursting out in cheers at random times. One kid was completely blind but ran around chasing a ball with a beeper with a buddy with him at all times. It was actually pretty inspiring and beautiful.

Josh was not thrilled or motivated but he was willing to go with it. His vision is good enough to see a soccer ball, though probably not good enough to want to run around chasing it. He got paired with a volunteer lady with a crazy "can do" spirit who patiently got Joshua to kick that ball around quite a bit, even dribbling around cones for a bit. He whined the whole time and kept asking to "go for a ride in the car" but he did it.

However, the next times were not as good. He got paired with other buddies, sometimes kids who were not much older than he is, who did not "get" him or how to work with him. My husband works on Sundays so I had my wiggly girls along with me. At one point, I had taken my girls over to the playground on the other side of the park for a bit. When I returned, Josh was laying on his back, screaming and kicking anyone who tried to engage him or be near him. His buddy had clearly had it and looked very panicky. No one knew what to do.

It was at that moment, that I realized that soccer, even soccer for special needs kids, was not going to work out. Sometimes, things just don't work out. Kids don't fit into neat templates of what a lot of other kids do at their age. Activities are supposed to challenge but not torture our kids. The fact that I had done reams of paperwork to register for AYSO VIP soccer does not mean that he has to keep doing this thing that he clearly did not enjoy. My fantasy of being a normal soccer mom does not get to determine what Josh's activities will be. We tried it. It didn't work. That's ok.

I packed everyone up and took everyone to the closest coffee shop. The kids were thrilled to each get a cup of ice water and a straw. (Sometimes, it really doesn't take much, to make these people happy.) I splurged on a very large latte for myself. We went to another park to play in a more relaxed context. I took some pictures of my beloved boy in his cute soccer uniform, knowing that it would be the last time he wore it. Maybe we'll try Special Olympics track and field next.

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.

A Conversation with Hope and Liam

The other day, I was driving in the van with Hope and a friend of hers, Liam, who had come over for a playdate. Anna was at another friend's house for a playdate. Hope, her friend, and I were on our way to go pick up Josh at his summer day camp.

Liam had never met Josh so I realized that I should probably interpret a bit about who Josh was so that he wouldn't be surprised, confused or scared upon meeting him. Here is how our conversation went:

Me: Liam, do you know what it means to have special needs?
Liam: No
Me: It means that some people's bodies or brains don't work the way that most people's do. Have you ever seen people like that?
Liam: Yeah. Some of the kids at my school are like that. They don't talk.
Me: Yes! I just wanted to let you know that Hope's brother is like that. His brain doesnt work as well as yours does. For example, he doesnt know how to speak very well yet. Josh is a little different from other kids his age. I just wanted to tell you that, okay Liam?

Liam: Ok.

(After a few minutes . . .)

Liam: Hope, does your brother annoy you?
Hope: No. My sister does but my brother never does.
Liam: Why not?
Hope: Because I love him the most. First is God, then Jesus, then my brother. Do you know about God?
Liam: Yes, I go to the Unitarian Universalist church where we have helping hands and healthy hearts. I go to the yellow room.
Hope: Well, I am in the big kids church now but my sister with the little kids. Want some gum?
Liam: I love gum. Sometimes I eat a whole bunch of it and I think about when I am going to poop it out.

Treasures within the conversations of kids are so easy to miss because they fly by so quickly and there is always so much going on. I just had to capture this one.

My Daughter Called Me a Sinner Today

Nothing makes my five year old daughter, Hope, more angry than when Mommy yells at her brother Josh. Today, when I did not get Joshua's beloved frozen mangos for him fast enough (uh, because I was dealing with an OVERFLOWING TOILET!) Josh took a bowl full of bread crusts and crumbs from breakfast and threw it all over our living room rug.

"No Josh!" I yelled, loudly, . . . and then I took the Lord's name in vain. Yep. Completely lost it. I know he's got an intellectual disability and everything but, he did it on purpose and he did it to make me mad. He was successful. I went in full on "Oh no you don't" mode. I put the plunger away then I grabbed his hand and made him pick up every bread crust and crumb on that rug. Then I made him take a time out in his room where continued to scream his head off.

All the while, Hope was seething. I had told her that I could not deal with her until I was done with her brother. In fact, I think I actually had said, "Put yourself on hold, Hope. I'm dealing with your brother right now!" To my surprise, she did. Finally, after I got Josh into his room, I took her into her room to give her some focused attention. I took her in my lap, held her tight and then I told her that I could see that she was mad but that I was proud of her for having self control and not losing it as well.

Then she looked at me and said, "Mommy, you're a sinner."

Can you believe that? I mean, yes, I am and I totally was being a sinner but I didn't even know she knew that word. We don't do a lot of talking about being "sinners" with them, even though I do believe in the theological concept. We are more likely to talk about "needing God's help"or "not being able to be good on our own" etc. It was like a slap in the face (albeit from a small, five year old hand) to be called a "sinner".

Hope went on to tell me that she loved Josh most in the world (after Jesus and God) and that I was hurting someone who she loved very much. "I hate it when you hurt Joshie, Mommy. You were being mean! You should clean that stuff up yourself!"

Oh man. Just kill me, why don't ya? She's worse than my own conscience.

I regrouped and said, "Hope, you're right. I shouldn't have yelled at Josh like that. That was wrong and it probably scared everyone. Will you forgive me?" She nodded her head without looking at me.

I continued, "But Hope, Josh also needs to learn that doing things like that is not ok."

"Why, Mommy?"

"Well, Hope, I don't let you and your sister throw food on the carpet. Josh needs to learn that too. He needs to learn the rules too."

Hope thought about that for a minute.

Her reply, "Well, why can't those people who come to work with him from school do that for him?"

"Sweetie, he needs to learn to be independent. He can't have aides or his Mommy do everything for him. Everyone needs to know that there are some things that you can do and that you can't do. It's part of growing up, even for him."

That seemed to make enough sense for her. She scampered off my lap to play with her sister. I sat in that rocking chair for a few more minutes, reflecting on what I had just said to her. Oh, man. How am I going to teach my son what is ok and not ok to do? Lately, he's been venturing into new realms of sneaky or inappropriate behavior, like hoarding food in his room or unrolling and eating toilet paper. How do I teach Joshua to have appropriate behavior and that there are consequences for his inappropriate actions?

One thing I do know is that yelling is not the way. Just as with typically developing children, when I yell, all Josh can do is get upset and react to the fact that I am mad at him. I don't often lose it with Josh but when I do, he always responds by lots of crying and hitting himself. My adrenaline is surging and so is everyone else's. This is not a good formula for teaching life lessons.

The problem is that Hope is so right. I am a sinner. I may have better social skills or cognitive abilities but, ultimately, I am no more able to control my impulses on my own than Joshua is. Today I am very aware of my need for God's help and my inability to be good on my own.

Happy

Joshua woke up this morning with a vision. He wanted to go out and sit in the car in the driveway. Nothing I could do would deter him from his goal; no video, no food, not the offer of snuggling. He wanted to go sit in the car. I even told him that I couldn't put music on in the car because that's been draining my car battery. No matter. The kid just wanted to sit in the car. He even eventually gave up on trying to drag me out there by pulling me by my hand and said, "I want to go to the car." Fine. I try to give him what he wants when he uses his words.

Now I am sitting in my front yard in my pajamas with an amazingly great, dark cup of coffee and my laptop. Joshua is experimenting with loud noises and gurgling sounds of different pitches. He is very, very happy. The loud noises and gurgling sounds are punctutated with bursts of uproarious laughter.

When Josh is happy, he is exceedingly happy. He is not trying to be happy. He is not putting on any act of being happy. He is not being happy in order to have any effect on anyone else. Sometimes, I think I experience being happy because I think I should or because I feel the need to be happy to balance out being sad. It's not that complicated for my son. He just is happy. I rarely know why. When something amuses or tickles him, he's just in it. And it comes out of him loudly. It feels simple and pure to me.

Here are a few pictures of Josh being happy. We often sit alone in the baby cry room during the Sunday service at church. I let him listen to music on my phone while I try to listen to the sermon on the video feed. At this particular moment, listening to the Black Eyed Peas is making Josh very happy.

My Kid is Such a Weirdo! (I can say this because I'm his Mom)

(Warning, this post is a little bit gross. Yes, again.)

OK. I know that life with this kid is going to be . . . different. I get it -- he's on a different journey, different wavelength, different perspective etc. But you know what? Sometimes I just get a wave of feeling like, "My kid is so weird!"

For example, Josh likes to nibble on books, just the corners. When he's bored sitting on the toilet, he's been known to chew on a big wad of toilet paper. Strange, right? Recently, he's been throwing up, randomly. I know, in my mother's heart, that he isn't sick. He just throws up and seems fine afterward. He's also quite constipated.

Tonight, he and his dad were coming home early from a family picnic at our local park. He clearly has to go to the bathroom so they go straight to the bathroom. As they walk in, before Alex can do anything, Josh puts his hands down the back of his pants and pulls out (among other stuff) a long piece of videotape. I am not kidding you. It's a miracle that this boy is not dead. I mean, is the body really able to deal with stuff like this?

When I get home, Alex tells me this story and I'm just floored.

Seriously? My kid eats (and poops) video tape. Thomas the tank engine, specifically. I know because Alex recently found a destroyed VHS tape cassette thing and threw it away. Stranger still, Josh has been obsessed with asking to watch the Thomas video. It's taking everything in me to not say to him, "No, buddy, you can't watch Thomas BECAUSE YOU ATE IT!"

OK. Take deep breath, Susan. Life is strange and gross and unbelievable sometimes. Life with Josh is especially so.

Evening Prayers

Right now my wonderful husband is reading to the girls and saying prayers with them. The girls clamor to get to go first, lifting up the very real concerns of their life. "Dear God, I pray for the boo boo on my leg and the line on my butt I got today when I was in the sun without sunscreen . . . " They pray for friends, for our upcoming car trip and for their stuffed animals. Then Alex prays for Joshua, that he would someday be completely healed.

It's a bittersweet thing to hear that. He's modeling for his little girls a belief in and a hope for miracles. I don't do that. I pray that Josh would use his words more and that he would complete his potty training. When I am alone, I pray for other things that I am desperate for, like that he would stop playing with himself in public places. But I don't pray for a complete healing. I just don't have the faith to even ask for that. But I am touched when other people do.

Hope and Anna are growing up with so many things being "normal". Praying for very real, up close miracles. Watching TV, oblivious while their older brother screams his head off under a big blanket right next to them. To them, their brother is their brother. The only brother that they have ever known. It's so amazing to me how much of their reality is shaped by what goes on in this house, in this household. I hope, with all my heart, that the imperfect love and the mustard seed of faith that we have and that we model to them is enough to give them a good start on a good life.

Joshua Learning How to Use His Words

What’s that called

when you have no idea

that the person you are talking to

doesn’t know what’s in your head?

Joshua’s ever recurring statement

with no subject,

“I want it”

like everything with this kid

happens over and over again.

“I want it”

“I want it”

“I want some”

Repetition, perseveration

echolalia.

His response to, “Hi Joshua”

is “Hi Joshua”.

But today comes a surprise connection,

like the sun coming out in a constantly cloudy place.

At the end of an eternal effort

my beautiful son

decides to tell me what he wants

using his words.

“I want Barney video.”

I run to turn it on for him.

More about Anna and her Brother

"Is Joshua always going to be special-needs?" Anna asked her question while looking out the window of the back seat of my van.

I wonder what is going on in that four year old brain of hers. How is she processing the life that she has been given to live and the family that God put her in.

"I think probably so, Anna. Why do you ask?"

"Well, is he going to get married?" (Anna has been thinking a lot about marriage and weddings. I began to be concerned about her thinking about such "big girl" stuff until she told me that she has decided that she is going to marry her Daddy.)

"I don't think that Joshua is going to get married, honey."

"Well, who will he live with when he grows up?"

"Probably Daddy and me," I replied.

"Aren't you and Daddy going to be really, really old by the time Joshua grows up?"

I can't remember how I replied but I was so struck by how such deep concerns bubble up in her developing little brain. She's so young. She still draws in stick figures. She's just now mastered recognizing the letters of the alphabet. She spends most of her time in the present, which is filled with immediate impulses and gratification.

Yet, somewhere in there, Anna wonders about her brother and his future.

Everyday there are reminders to me that Anna and her older sister, Hope are being shaped, from the very ground up, by the presence of this different little boy. I was looking through recent pictures this week and noticed that in this one (above), Anna is helping her brother to look at the camera.

Earlier this week we were at Hope's school picking up Hope and another boy who I was giving a ride home. Josh was in the back of the van screaming his head off for no apparent reason. The boy (a very polite and nice kid) had his fingers in his ears and did not look like he was looking forward to sitting in the back with Josh. The girls were already strapped into their booster seats in the middle row. While I put the other boy's backpack into the very back of the van, I saw Anna unstrap herself, pick up her booster, and settle herself into the back seat with Josh. The boy that I was giving a ride to seemed mighty relieved. Later, I asked Anna about why she had done it, whether it was out of concern for the other boy or for Josh. Anna said, "Because I love Joshie, Mommy. He's very special to me."

Oh man. Such sweetness. . . but do I start saving now for therapy for this sweet little girl who feels responsible for her brother at age 4?

Helping Others Get to Know Josh

When I turned 40 years old (two years ago), I did some reflection about some goals for my 40's. What were my goals for this decade of my life? What are the most important things that I really want to have happen in the next 10 years?

I can't even remember what goals #2-5 were (probably something about losing weight and working out more-- oh well). Goal #1 was to live and arrange our lives so that we had a good number of people who knew Joshua on a deeper level.

It's so easy to miss out on getting to know Josh. He generally doesn't communicate with words. His auditory sensitivities make many social events impossible for him. He has a rather packed schedule of necessary therapies and medical appointments. He doesn't really care about socializing. His favorite thing in the world is to sit in his room and listen to music by himself. His disabilities are complex. Yes, some people remember that he has autism but only a handful know what Septo-Optic Dysplasia even is or remember that he has this primary diagnosis. There is something so inherently isolating about living with disabilities.

But I have a deep desire for people to, get to know my son. He is such a beautiful little soul. He is an incredible source of joy. He has so much to teach. You just have to have eyes to see and ears to hear. Surely, the blessing of who Joshua is is not just meant for our nuclear family?

So I've kept this goal in my heart and in my prayers-- that by the time I'm 50 years old (and Josh would be 16!) there would be a number of people, and families who have gotten to know some of the complexity, beauty and challenge of who Joshua is.

One of the things we've started to do as a family is to vacation with a couple of other families. My husband has a friend from college who generously loans us his vacation home several times a year so for the past couple of years, we go up to this cabin in the mountains with one family on MLK weekend and another family for a week during the summer.

A few weeks ago, we went up for an extended weekend with one family with whom we are long time friends. Their eldest son, Ben, is 12 and a very sweet kid. Ben has always had a special willingness to hang out with Josh. A few years ago, during an Easter Egg hunt in their backyard, Ben walked around holding Joshua's hand and helping him to find eggs. During our weekend at the cabin, we went for a little hike and, without prompting, Ben took Josh's hand when he sensed that Josh was feeling visually insecure about walking across a bridge. Walking behind them, I noticed this, smiled, and snapped a picture.

The other family that we go to the cabin with also has a son who is twelve, Mark. Mark's mom told me a story the other day that touched me. Apparently, a few of Mark's friends from school were talking about something or someone and saying that it was "retarded". Mark spoke up and told them, "Hey, you shouldn't use that word. Our family has a friend who has special needs and they would not appreciate you using that word like that." I mean, who does this when you are a twelve year old boy? Did I ever speak up for anyone else at all when I was twelve? I don't think so.

Somehow, my son's very presence is teaching people about advocacy and about looking out for unexpressed needs. I love this. How will their experience of knowing Joshua help these two young men to become better students, husbands, dads, bosses or church members? How will being around Josh give them a category for caring for those who are different from the norm?

I also love it when people (and especially other kids) ask me questions about Joshua, his life, and even his disabilities. I like it because it tells me that they see him and are wondering about him. I appreciate the initiative to move a little bit into his/ our world. I feel included, known, and loved.

Sickness Sanity?

Hello friends! I'm back after a brief hiatus, primarily due to sickness in our household. Here's my question of the day: How do you stay sane/ happy/ energized/ motivated when you are dealing with week after week of sickness?

Right after Christmas, three of us got lice (thanks to an outbreak at my daughter's preschool). Soon after dealing with that, I got sick, the girls got sick, my husband got sick (and has had a horrible cough that kept him up at night for three weeks). Josh has had a stomach bug three times since the new year started (and it's only mid-February)!

I woke up this morning and realized that I might be going insane. I spent most of the weekend at home monitoring Joshua, who had a fever. Due to his medical issues, if we can't control his fever or vomiting then we have to take him to the emergency room to avoid a potentially deadly adrenal crisis. This is somewhat stressful.

Now, I am sitting here at my desk, having sent all three kids off to school . . . but I'm feeling a bit PTSD. Who knows when the next round is going to hit. Why schedule anything at all when all routine is going to go out the window again because someone is going to have to be taken care of all day?

SO, someone out there give me some advice. How does a modern mom weather the winter cold blues with emotional and spiritual strength?