Josh and the Homeless Man at Church

My son has a ministry to people who hang out in the back of the room during our Sunday Morning service. Our church meets either in a community center theater or a gym, depending on the week. Josh prefers the gym as there is more space for him to walk around in circles as he enjoys the musical worship. Josh is so happy and in his element when he is experiencing the music of the worship band (and congregation singing) at church. In fact there are a few other autistic kids in our church who do odd but sweet things during the worship service at our church. I think that most people have gotten used to their (mostly happy) noises. Some have even told me that they are blessed by watching Josh experience God.

Josh has an aide most weeks, in case he gets overwhelmed or needs to walk around outside. This past week, his aide told me a memorable and unusual story. After walking in circles for a while, Josh noticed a man sitting on the floor by the door and decided to go sit in his lap. The man was a bit startled so Josh got back up and resumed his solitary little dance. Later, after the service, the man approached Josh and interacted with him a bit. He told the woman who was his aide that morning that he was very touched by Josh's initiative, by who Josh is and by how he was experiencing God. Apparently, this man is homeless and is currently living in his truck. Before his life took some difficult turns, he was married to a woman who was related to a child with Aspergers Syndrome (a diagnosis which is on the autism spectrum). Although he no longer related to this child since his divorce, the connection seemed to stir up deep memories for him. He shared some more about his life with the woman who was Josh's aide that week then thanked her for listening. "I guess I just needed to talk," he said. He told her that he would see her (and Josh) next week again at church.

I've often wondered what the purpose is to Joshua's life. He will not contribute to this world by being a lawyer, an academic or a doctor (the three options that most Asian-Americans are encouraged to consider). He will not make a lot of money. He will not offer insights, wisdom or interpretations to his community. What he will do, however, is to have very simple but human connections with people and, hopefully, will touch them with who he is. In this way, I believe that God has a good and useful plan for his life. I feel honored to get to be a part of that.

In Praise of Birth Moms

Last week we woke up and found that we had been sent a surprising email. Joshua's birth mom (I'll call her Andrea) emailed us after 7 years of not being in touch. We were thrilled to hear from her.

I posted something brief about it on Facebook and it was interesting to me to hear people's slight discomfort with open adoption even through their comments on my quick post. "Well, I'm happy if you're happy" said one Facebook friend. "You have such a big heart" said another. I have a feeling that it's quite odd for most people for adoptive parents to be in touch with birth parents.

Alex and I love having connection with our two adopted children's birth parents. Once we learned what "open adoptions" could be about, we were all for it. We want our children to know that adoption is a part of their life stories not because they were abandoned but because they were born of amazingly courageous young women who made a choice in love. These women came to decide that placing their babies for adoption would be the best option for the child and for them. We want to know and bless the cultural backgrounds of our children as much as possible. We appreciate having as much medical history as possible. Open adoption has been a tremendous blessing to our lives.

For Hope that means that we get visits about three or four times a year from her birth mom. We've met her entire nuclear family and some of her friends. She is an amazing person; lovely, gracious and mature. About a month ago for her last visit, Hope suggested that her birth mom might want to take just her out to ice cream for a "special time". Anna asked why she couldn't come along. Hope told her, "Because she's my birth mom so I get special time with her." Anna declared that it was not fair that she didn't get special time with her birth mom. I reminded her that I was her birth mom and that she often gets special time with me. I was informed that I don't count because I am the "regular mom" and that she wanted another birth mom that doesn't live in our house (presumably so that this person could take her out to ice cream).

We were in contact with Joshua's birth mother for about a year after he was born and placed with us. We even drove out to her town (about 2 hours from ours) to pick her up so that she could come and see where we lived and where Joshua was going to grow up. When Joshua was hospitalized and diagnosed at 2 months old, we were in phone contact with her then email contact. We told her everything we knew about his diagnosis (SOD) by that first year then we lost contact with her. (She stopped responding to our calls and emails.) Our adoption social worker told us that it is not uncommon for young birth mothers to need to take time away from contact with the adoptive families. We respected that but were sad to not be able to share about Joshua's life with someone else who loved him very much.

This is some of the background to why we were so thrilled to hear from Andrea. She (along with Hope's birth mother) is one of our heroes in life. She became pregnant at 15 years old and had no family support in her life. She was living with an older brother, who mostly spent time working in a city a couple of hours away. Andrea broke up with her boyfriend immediately and did not tell anyone about the pregnancy (including the boyfriend/ birth father, who did not know about the baby until he was born and until he was asked to sign papers terminating his parental rights). For some reason, despite only having information about abortion as a possible response to an unplanned pregnancy, Andrea felt that it would be wrong for her to abort the baby so she kept the pregnancy. She wore big sweatshirts through the end of the school year then mostly hung out at home by herself during the summer (Josh was born in August). When she went into labor, she mostly labored at home then took the bus to the hospital. She gave birth 30 minutes after she arrived. Then she asked the nurses to help her to find options for adoption.

Although Hope's birth mother's story is very different, she shared Andrea's experience of feeling immense external pressure to abort but also having a strong internal feeling that this was not what she should do. Both of these young women walked through the long months of having a precious baby form inside of them. Both carried through with the conviction and choice to allow someone else to raise that child. I have no idea what kind of courage and love it must have taken to make this choice but I respect it so much.

Through adopting Hope and Joshua, our eyes have been opened to the reality that there are many, many women out there who are birth moms. They have a huge part of their lives that few people may know about and few might affirm. One day, we shared Joshua's story with a speech therapist who was at our house for a home visit. She listened carefully then she shared with us that she had given birth to a child over 20 years before and had placed her for adoption. Ironically, she and her husband struggled with infertility and never had children. As she told us her story, she wept openly, her grief still very much with her, along with her love for the baby that she had so many years before.

There is so much more to say about Joshua and Hope's birth mothers but the main thing that I have on my heart today is this: Thank you. I treasure that suffering and sacrifice that you went through so that these beautiful, precious children can exist. May God honor what you have done and who you are.

The Dementor Moment

Parenting young children is almost always an exceedingly tiring experience. However, every now and then, a parent will encounter a situation that sucks every little bit of life force from your body and soul instantaneously. My husband and I refer to it as a "dementor moment", named after the magical creatures in the Harry Potter series who drain people of all positive emotions and leave them with only darkness and despair.

I had a dementor moment this very evening. My husband was working all day in his office preparing for an evening meeting. I was in full "get the kids to bed early because I'm already pretty tired" mode. Two thirds of the children had been fed and I had some good momentum with casting vision for a nice bath when my son threw up all over himself and me. Every ounce of energy immediately left me. My chin plunged to my chest in defeat.

When Josh throws up, it means that we have to be super watchful for how he's doing. We triple one of his meds (specifically, the hormone that helps him to fight illness) and, if he can't keep it down, we have to give him a big, fat emergency shot and then immediately take him to the emergency room to get more meds intravenously. We are never allowed to take Josh very far from a hospital with an emergency room. As you can imagine, we have to be pretty vigilant when Josh gets sick.

I left the mess that was my son and ran for the phone to call Alex. "Josh threw up. I need back up. Come home now." Thankfully, my husband's office is only 10 minutes away and he registered the level of need in my voice. He came through the front door in 8 minutes and immediately got to work on moving the girls along their evening routine (while throwing dishes into dishwasher and making the kitchen a little less overwhelmingly chaotic). I put myself and my son back together again, praying as I went. Within 10 minutes, the girls finished their dinner and were headed toward their bath. I sent Alex back out the door to finish prepping for his meeting and I was able to go on with the rest of the evening at home.

Sometimes, all that is needed is some quick back up and the good sense to ask for it. The situation was not really despair-worthy but I just didn't have it for that moment. I have learned that you can either try to slog it out yourself or you can try to ask for help-- from a friend, from my husband, from God, from anyone on Facebook, anyone. It is amazing to me how much just a little bit of support goes toward being able to make it. In my opinion, Special Needs Parenting Rule #1 is "Ask for Help".

Birthday Party Conversations

This past weekend, Joshua's sisters, Hope and Anna went to a close friend's birthday party. Apparently there were 12 little girls ages 4-6. At one point, the girls were sitting around and someone realized that everyone there had a brother! The host of the party suggested that they all go around and share their own name and their brother's name. When it came around to the older, 6 year old girls, there was additional commentary about how annoying their brothers were. Soon, everyone was chiming in declaring that their brothers were also annoying; pushing them around, taking their stuff etc.

But my Anna said, "My brother's name is Josh and he's not annoying. He doesn't know how to be annoying because he has special needs!" The birthday girl's mom, asked a few questions about what "special needs" means and they embarked on a whole group conversation about what it means to have special needs and the different kinds of special needs there are, physical, vision, etc. Anna told me all about this conversation while we were brushing her teeth later that night. I so wish I had been there to soak up the sweetness and beauty of the moment.

Who is this Stranger in My House?

For the past several weeks, Joshua has woken up in the morning and has walked himself to the bathroom to pull down his pants and take a morning pee. Now, for most typical 8 year olds, this is not a big deal. This is a huge deal for mine.

Although Josh can do much of the bathroom routine by himself, he has never taken responsibility to get himself there at the right time. For his whole life he has seemed utterly happy to just go in his pants if we don't take him. I cannot tell you how many times I have cleaned up the accidents that this child has had.

Because of Joshua's hormone deficiencies, he is usually running out of urine condensing hormone by morning time. This means that it is very difficult for him to control his output, especially at that time. Josh always goes to bed with a nighttime diaper, even though he has worn underwear in the daytime for several years now. I have never imagined that we would make progress in his being potty trained at night and, honestly, it has not been at the top of my list of goals to work on for Josh.

The nighttime diaper is a pretty big deal in the world of caring for Josh. If you don't put it on right or, God forbid, if you don't give him the right dose of evening pills, you can wind up with a bed that is completely soaked. We have thrown many, many, many yucky pillows away.

However, for some reason, lately Josh has decided to not pee in his diaper at night or in the morning in bed. And he has decided to take responsibility for getting himself to the bathroom in the morning. The first time he did this, I seriously thought that there was a stranger in my house. I could tell that the person who walked by my slightly open bedroom door was taller and heavier than my girls. Who could it be? I had no category for Joshua getting himself out of bed in the morning. Immediately, I jumped out of bed to see what was going on to find him calmly pulling his diaper and pajamas back up then washing his hands. "Want toast" he said to me with utter nonchalance.

Even now, weeks into this pattern, I'm shocked and surprised every time this happens in the morning. I take a minute to be thankful and amazed then I run to the kitchen to get a reinforcing chocolate chip and jam it into his happy little mouth saying, "Josh, if you take yourself to the bathroom, you get a . . . " "Choc-lit" is his reply.

I'm not sure when Josh will be fully potty trained; when I don't have to mentally calculate how long it's been since he went to the bathroom and then prompt him to go. He's not totally trustworthy yet. But I would like to take a minute to note that my son is learning to take responsibility for his morning pee and, for that small but significant thing, I rejoice!

Greatness

Last week, miracle of miracles, I went and saw two different films at the cinema. A plethora of evenings that my husband go to be out doing fun, sports related things prompted me to organize a ladies night out. Then a few days later my husband and I had a scheduled "date in the middle of the day because that's when we could arrange childcare" so we sneaked in a matinee.

The first movie that I saw was "Secretariat", which is about the horse that won the triple crown in 1973 and his owner, Penny Tweedy. The second one was "The Social Network", which is about Facebook founder Mark Zuckerberg. First of all, how wonderful it is to be immersed in good stories. They say that the body craves food and water, the heart craves love and the mind craves stories. I resonate wholeheartedly with that. Nevermind special effects or sex and violence, what I crave is to escape through a good story.

I also found that both movies made me think about the worth and importance of my life because they were about "greatness". The pursuit of "greatness" sure does make for a good story.

Secretariat was the only non-human to be listed in the Sports Illustrated list of 100 greatest athletes of the 20th century. The story of Penny Tweedy's is inspiring as well; a regular housewife who dared to reach for the stars. She defied expectations and social conventions to take that horse where no one dreamed he could go. Disney geared the storyline to inspire the movie goer with Mrs. Tweedy's tenacity and inner sense of fight. According to the movie, she was an inspiration to her own teenage daughter, a role model for daring to go for what is deep inside of you. The Facebook/ Mark Zuckerberg story is an amazing one of it's own. This man is only 26 years old, is worth almost 7 billion dollars and is a major culture changer of our era.

Personally, I felt two things. First, I was inspired to look at my life and ask, "How do I still need to be a person of dreams?" I think that there is such a temptation for me to just live my practical, daily life and not hope to be a part of something greater. Of course, not everyone is a world history maker or a culture changer or a millionaire/ billionaire but we all have to have a greater vision for something more, something that engages you to the core or else you begin to die a slow death.

Secondly, I felt sobered by the "cost of greatness". Penny Tweedy became estranged with her husband in the midst of her pursuit of the triple crown for her horse. According to "The Social Contract", Mark Zuckerberg was, well, not a very nice human being and really screwed over his best friend. I know that it's not always this way. Not every great person in the history of this world had a failed marriage or was a bad friend. However, I am aware on a deep level that in order to be great in this world, you have to give up a lot of the best things in a normal person's life, family normalcy, healthy friendships, and quality time for both.

I am thinking about how tempting it is to want to be great in the eyes of people. Despite the costs that these people paid to be great, it is so darn attractive. Who doesn't want to be a super-successful, influential, respected person? Who isn't drawn to be warmed by that fire? I am. If I am honest, I have to admit that I love the idea of being famous or powerful or influential. Watching these movies made me realize how powerfully attractive it is to me.

Ironically, at church these days, we've been going through a part of the Bible that is also about "greatness". In Mark 10:43-45 Jesus says, "Whoever wishes to become great among you must be your servant, and whoever wishes to be first among you must be slave of all. For the Son of Man came not to be served but to serve, and to give his life as a ransom for many." Boy, this really turns the whole "dream about being a billionaire" thing on it's head.

In the end, I do want to be great but I think that I believe Jesus that being great by becoming a servant and pouring out your life is a better path to ultimate, lasting, and true greatness than making a lot of money or making a name for yourself. This is a good thing for me because I seem to have found myself with three little creatures with cavernous needs whom I must serve (sometimes it feels like be a slave to) everyday. One of those little people is someone who will probably never outgrow his need to be taken care of in very basic ways. Because I am a parent of a child with special needs, my life path is one of a servant. My hope and my prayer is that, as I walk this path, my heart stays in a place of really seeking to be great by being a true servant rather than yearning for greatness in some other way.

My Child is Cold

"Look Mommy, it's raining!" My girls were delighted to see true rain really coming down all of a sudden. Of course, it was the first time in a long time that I hadn't checked the weather report. The rest of this week had been overcast in the morning but warm and sunny by the mid-morning or afternoon.

I was hit with the realization that I sent Josh to school today in shorts, a t-shirt and a very thin sweater. Not only did it start to rain soon after I got him on the bus, but I realized that his class was planning on going to a field trip to a pumpkin patch farm this morning. Attached to the permission slip that I had signed earlier in the week was the suggestion to dress your child warmly and to wear comfortable shoes.

I panicked. I sent my son off to school and off to a field trip where he is going to be cold, wet, and uncomfortable. Oh my God. What kind of a mother am I?

Thinking about my child being out there somewhere underdressed and cold hits a "Asian mom/ your children must never be cold" nerve in me. Do you ever notice how Asian parents or grandparents always overdress their kids? We have a park down the street where a bunch of Chinese grandparents gather in the daytime with the small grandchildren that they are taking care of. Those children are always layered to the hilt. Vests, scarves, gloves, thick jackets--- all on a moderately warm day!

It must be somewhat connected to a shame issue. I do feel some worry that people are going to judge me for not having the good sense to properly dress my child. Yes, this can be difficult since I live in a part of the country that has a million different micro-climates and big temperature fluctuations throughout the day. But nevertheless, I still feel the pressure to get it right. . . especially since my child happens to not be able to say, "Hey, I'm cold".

I called his teacher who said, "Yeah, we were just looking through the lost and found to see if there was something else he could wear." (More shame filling my innermost soul.) Apparently, they were still going to go to the field trip despite the rain because the bus was already there and the rain was supposed to burn off by mid-morning. They were planning on leaving in five minutes so there was no time for me to rush over to his school.

I sprang into action. No son of mine is going to walk around a "%#*@! pumpkin patch cold. Not today. Not ever. "Girls, get dressed" I commanded. In less than 5 minutes, I got my two girls and myself dressed, brushed hair and teeth for all three of us and snapped them into their carseats. We were at that pumpkin patch at least 10 minutes before the school bus was.

When they finally arrived,the sun began to come out and it turned out to be a lovely day. My son, however, walked around wearing four layers of clothes all morning.

So what was my deal? Why was I so frazzled this morning? I'm not sure but I have a feeling that it has to do with the fact that there is so much about Joshua that I cannot control. No matter how many exercises I do with him, there are so many skills that he just cannot master. This makes it very hard to feel like I am doing my job as a mom. But there are a few things that I can do and it works. I dress him appropriately and he's not too hot and not too cold. Realizing this (and writing about it) helps me to have more grace on myself.

Two Encouraging Vignettes

Yesterday my girls did two things that were so sweet and memorable that I just have to write them down.

I was dropping Hope off at her school in the morning. Because Josh and Anna did not have school, they were both with me. We were a big part of adding to the congestion in the hallway where Hope was hanging up her backpack in her cubby. Another little girl was standing next to Hope waiting for her turn at her cubby. She stood looking at Joshua, perhaps noticing that he was different. I initiated by saying to her, "Annie, this is Joshua, Hope's brother." Hope immediately jumped and said, in the same happy tone that she might use to talk about going to get ice cream, "He has special needs!"

Annie's dad, who was also standing there in the hallway commented, "Kids are so great." Indeed, they are. I savor the lack of shame or embarrassment in Hope about her brother. She is at a beautiful stage of just loving her brother and wanting others to know all about him. Hope is both exuberant and inclusive. To her, Joshua being different is not necessarily a bad thing. It's just who he is; who he always has been to her. I love that.

Later that afternoon, Anna spent a long time creating an art project using little beads. She has a big bucket of multicolored little tube shaped beads which she puts on a star or heart shaped board. When the child is done, a parent is supposed to iron it so that the plastic beads sort of melt into each other and you get a multicolored plastic thingy, which the girls absolutely treasure. I love this craft because it occupies them for a very, very long time and they are always happy with the results.

Anna had been happily working on this for almost 20 minutes (which is a long time in the world of a preschooler). She left her project alone for a few minutes to go to the bathroom. While she was gone, Josh sat at the table and accidentally knocked the project, and all of the little beads, over. Anna was understandably upset when she saw what he had done and let out a cry of disappointment and sadness. What surprised me, though, was what she said, soon after her discovery. She said, "Well, it's okay. He doesn't know. I can do it over again." Anna is not yet 4 years old. How is it that she was able to set aside her emotions and sense of being wronged because she has perspective on the capacities (or lack of capacities) of her brother? How was she able to have such grace on him when she had to pay such a cost for who he is? Maybe her dad and I are modeling some good things. Maybe she is just a very sweet soul (hmmm . . . sometimes). Maybe God is at work inside of her. I am guessing that it will not always be this way but, for now, I treasure these little snapshots of grace and love.

Anna's Bad Day at School

I asked my 3 year old daughter how her day at preschool was and her beautiful eyes started to well up with big, fat tears. "I had a BAD day!" she said.

"Why sweetie?"

"Sheri said that Joshie is weird and yucky!" My heart dropped. Ok, here we go. We're officially beginning the process of the girls dealing with how other people see and respond to their brother. Josh sometimes comes with me (if he misses his bus) when I drop her off at her school since his school is nearby. If he comes into the classroom as I sign Anna in, he usually wanders around walking in circles, flapping his hands and making his usual humming noises. We are immune to this and it's all good to us as long as he is not crying or screaming. Sheri is a cherubic blonde haired, blue eyed, gorgeous little child with lots of confidence and opinions. Her mom has been initiating for her to have a play date with Anna.

"Oh, sweetie. Why do you think she said that?" I asked.

Anna responded with the saddest face you've ever seen, "Sheri said that Josh makes funny noises and he flaps his hands."

Hearing this completely breaks my heart but I try to be present and help her to process her experience.

"Anna, what did you say to her?"

"I told her that was not very nice because he's my brother and he's very special to me!"

I give her a big hug and tell her that I was so sorry. I try my best to interpret that it's sometimes hard and confusing for people to understand people with special needs. As I am comforting my little girl, I realize that by being a part of our family, she's on a special journey of being an interpreter about the special needs world to the typically developing world. Not only was she born into the burden/ opportunity of being a bridge between the white and Asian worlds, and the churchy and unchurchy world, but between the disabled and typical communities as well. Anna will be a bridge person and she will have the perspective, gifts, joys, sufferings and frustrations of being a bridge person. I know this well.

I hope that this builds and strengthens her soul and makes her a strong and hopeful person. I hope that she can speak up for the rest of her life just as she spoke up today. I hope that she will let herself be comforted when she feels the hurt of other people's ignorance.

I pull out of these deep thoughts and ask her, "Does that mean that you don't want to have a play date with Sheri anymore?" Her response, "Oh, no. I still want to have a play date with her." God bless her little resilient and forgiving heart. I hope I can be more like that when I experience mean people.

Poo Poo in Paradise

Well, it happened. The thing that I've been dreading for almost four years happened yesterday on a lovely, end of the summer evening with friends. We had been invited to a barbeque at a nearby neighborhood swim club that our friends belong to. It was Friday of Labor day weekend. Did we want to bring the kids over for a swim and a potluck dinner? Actually, yes! It is difficult for our family to socialize together with other families because of the Joshua factor. Barbequing at a pool is a perfect setting to give it a try. Swimming is one of the things that all of our kids, including Josh, love to do. The adults might even get some conversation in over a glass of wine while grilling some bacon wrapped pork chops.

It began as an unbelievably lovely time. The day had been relaxingly, but not exhaustingly, warm. All of the kids were having a great time in the pool. There were two lifeguards on duty and, because it was later in the day, we were the only people at the rather large pool. I was able to relax and not be as vigilant about watching the kids constantly. I did keep an eye on them but I was also enjoying chatting with my friend. I was amazed at how all of my kids have really grown in their swim skills over the summer. Joshua, as usual, was thrilled by the sensory stimulation of the water. He was all smiles and laughter, playing by himself in the shallow end.

Dinner was almost ready when my friend said to me, "Susan, the color of the water around Joshua . . . " Oh God. I knew at once that Josh had pooped. I was afraid that this might happen so I had been asking him all afternoon, "Josh, do you need to go potty?" He had replied with a resounding, and even slightly offended, "No!" Alas, just asking had not been enough. I pulled him out right away, wrapped a towel around him and marched him to the bathroom while my friend went to go tell the lifeguard, who got everyone else out of the pool. Cleaning him up in the shower was a feat of indescribable grossness. After a long time of cleaning up, we emerged.

It struck me that Josh felt no embarrassment. Or if he did, he had no way of showing it. He just seemed relieved, maybe refreshed even, in a fine mood and ready for dinner. What must it be like to be that free/ devoid of social shame?

Everyone was very nice and understanding. Even the kids (age 6-16) of our host family seemed empathetic and full of grace. The only unkind presence was the voice in my own head.

My husband had asked me, when he checked on me in the bathroom during the clean up phase of the evening, "How are you doing? Are you feeling ashamed?" Honestly, I didn't feel ashamed. What I felt was waves of massive anxiety, the dark scenario that we would be experiencing these same things when Josh was 30. That he'll never be potty trained. That, someday, I will miss some really important, verbally unexpressed cue from this mysterious little guy and something really bad will happen. I guess that's where my struggling heart goes. The darkest scenario of all, I realized, is that I would miss something and Josh would die, like the other little girl we knew of, who also had Septo-Optic Dysplasia, who died after getting the flu. I woke up this morning with even more anxious thoughts, which stayed with me for the rest of the day.

The thing that burst the anxiety bubble for me was later this afternoon when I tried to get a post-nap Josh to drink some water. He did but then promptly threw up all over his bed, himself, and me. It was completely ridiculous. I just had to laugh. Really? Is this really happening?

In that moment, I realized how absurd it is to try to be in control of this person's life. UNEXPECTED THINGS ARE GOING TO HAPPEN. Crazy, silly, mortifying, embarrassing, difficult, challenging, memorable, smelly, messy, grace-needing things are going to happen. It's just a given with Josh. Here is a child who is an adventure. Life with Josh is going to be really, really different and I can't control that. I can try to pretend that I am in charge of nothing bad ever happening or I can buckle up and ride the ride.

I Love our Ophthalmologist

I love our ophthalmologist. Today my husband took Josh for his half yearly visit to his pediatric ophthalmologist. I needed a break from trying to keep Josh occupied during the unavoidably long waits in the waiting room (our doc is a very popular guy at a top teaching hospital). I don't usually mind the wait, though. Our ophthalmologist is a phenomenal guy.

When Josh was first diagnosed (and back when we thought that his visual impairment issues would be his primary disability) we went to another doctor, who practiced at a hospital closest to us. This doctor did not have a very good "bedside manner". She exuded very little patience with actual people and a lot of fascination with "cases". I felt like she never actually looked at me. It was a strange experience of going to an eye doctor and not being seen. She was one of those people that made you wonder why certain people go into pediatrics. She was so clearly not a kid/ baby person. She wasn't great with stressed out parents either. Maybe she felt like little kid eyes would be more challenging to deal with? During our second visit with her, Joshua (who had really bad reflux at that time) threw up all over her and me in a massive fountain or semidigested formula. It was our last visit with this particular doctor.

Anyhow, our current doctor has the most amazing manner and tone. In addition to being a well-known, widely respected teaching physician, he has a way of making you feel like you (as a parent of a child with special needs) are doing a really good job with the challenges that you face. He asks lots of questions, really listens well and always finds a way to affirm us personally. (Thus, the long waits in the waiting room?) I always go away from these appointments encouraged. And this is not always the case with the other billions of doctors that we see for our son.

Apparently, today our beloved doctor asked how we were doing as parents with all that we have to handle. "Do you guys get away at all?" he asked my husband. My husband responded that we are trying to get back to regular date nights but we haven't gone away on an overnight in a while. Doctor Awesome responded by gently encouraging my husband to make it happen, which he was very open to.

This afternoon, when I asked my husband how the appointment went, he said, "I want to be adopted by our ophthalmologist. I felt so cared for. Our son got his eyes checked by a world class specialist while I was urged to look at my the health of my marriage and my initiative in it!"

What's not to love about that?

The Benefits of Having a Non-Verbal Child

The other day I had to take two long drives in one day. One of those was with a car full of people. The other was with Joshua. I realized that day that it is so nice to go on drives with Josh.

This kid loves riding in the car. I think that he motion of a moving vehicle gives him sensory input that he craves. If he can listen to music that he likes, it's even better. If he has a big apple to gnaw on while listening to music (with no noisy little sisters in the car) then I'm almost guaranteed to have an extremely happy kid. Josh will just sit in his car seat in the back of my minivan, happily, quietly for a long time on a long car ride. The blessed silence is only punctuated by sudden random bursts of laughter and other sounds of joy and contentment. I feel like there is a sense of "freedom to just be" that I rarely have in my life and I am led into it by Josh. I am free to think my own thoughts or just space out. It's wonderful. It's like a sanctuary.

This is in contrast to being in the car with my two girls, age 3 and 4. They squabble. They comment about every possible thing that they see. ("Look Mama, a red car!") They ask questions that make me have to think a lot about how to respond. ("Mama, how old am I going to be when I go to heaven to see Papa?" or "Why did God put nails in Jesus' hands?") Car rides with the girls are on a spectrum of delightful to exhausting.

Of course, if I had a choice, I would prefer to have Joshua be able to fight with his sisters. It would be a dream to have him harass them as an older brother should. I would put up with a million irritating questions from him if I could. I yearn from the bottom of my heart to communicate more deeply with my son. However, this is not the hand that we've been dealt. Josh rarely uses his words, except to ask for things that he wants . . . and we are still working on that.

So, for now, I am learning to appreciate the upsides of who my son is. I do believe that it's a critical discipline to "count one's blessings". So here I am counting one of them. I love to ride in the car with my son.

My Dream from God

Last night I had the most vivid dream that I've had in a long time. I was on some sort of "American Idol" type of show as a contestant. There was a whole production set up with producers, make up people and tech assistants swarming around. I was getting prepped and it was almost my turn. Suddenly I was hit with the (true to real life) realization that I CANNOT SING. I am not just being humble. I think I am the only non-musical Korean-American in the whole country. I do not play any instruments, I can barely plunk anything out on the piano. I am not even good at listening to music. I, seriously, do not have a good singing voice. I do not even karaoke, ever. I cannot imagine having a voice that’s good enough for public consumption in any way. It's really not my thing. Am I getting my point across?

So there I was, waiting to go on. I was desperately trying to think through all of the songs that I know to find one that I could sing in a decent range (I think I came up with a kid song from Barney or Raffi or something). I woke up really nervous.

I also woke up being tackled by two of my three children so I promptly forgot the dream. However, the dream came back to my mind in vivid colors during the musical worship portion of our Sunday morning church service later this morning. I asked God, "What was that dream all about?" Here was His response:

"You think that you have a bad singing voice but to me, your voice, especially when you are worshiping me in song, is the sweetest, most beautiful voice possible, because of who you are to me. You are my precious daughter and everything that you do in love, I love. And, by the way, this is how I feel about your parenting. You think of yourself as a mediocre, struggling, “this is not really my best area of talent” mom but I see your mothering as delightful and gifted. You see all of the ways that you don’t hit the right notes, but I receive what you do for the children that I created as a work of art.”

So how’s that for affirmation? God thinks that I rock as a mom. I know, in my heart, that it’s only partly true but, hey, I’ll take what I can get.

A Bit of a Rant

Warning! What follows is the frustrated rantings of a very, very, very tired mother of a kid with special needs.

My question for today. Is it too much to ask that a child who is almost 8 years old would take responsibility for his own toileting? Is it too much to ask that this child not poop in bed and wipe that poop all over his room?

In my current, not completely rational state, I feel strongly that the hundreds of non-insured dollars poured into behavioral psychologists and autism specializing pediatricians should result in some strategy that leads my child to be potty trained.

My emotions tell me that the billions of prayers that I've prayed to a God, who I know cares about me, should have some sort of result along the lines of not having yucky poop accidents.

My thoughts flit around the fear that I will be cleaning up after my son in this way when he is 30 (though even in my exhausted state I know that I cannot go there tonight). Have some thought discipline, girl.

Well, the laundry is going. The room has been cleaned. The shower has been cloroxed. I have vented here on my blog. The child has been kissed and sent to bed. My emotions are settling down and perspective is seeping into my worn out little brain. I'm beginning to remember that there are a lot of reasons for Josh to be slow in learning many things in his challenging life. I am holding onto the truth that Josh is one of the greatest gifts of my life and I wouldn't know how to live if I ever lost him.

Ah, big sigh. Good night.

The Imagination

My two (neuro-typical) daughters (age 3 and 4) were having a delightful time doing a spontaneous art project today. The found some textured paper that they decided they would cut up. Then they found a stapler and had me staple the pieces together as they directed. Then, after trying to figure out if the pieces were kites, or lamps or they decided to the pieces to the wall to make a picture. The whole time, they were creating stories about their artwork, playing off of one another's ideas.

"This is the cross of Jesus but then Elmo needed to use it for his birthday party."

"Yeah, this one is a kite that is only used by ballet dancers or Elmo."

"I'm going to be a ballet dancer who dances on this . . . waterfall."

The development of the imagination is an amazing thing to watch. Their little minds were using all sorts of new data that they were processing in wonderful ways. Their brains are like lint brushes of human experience just picking up more and more information every day. And the gift that God has given them to play with and process that information is the imagination.

When I see this happening in my girls, I always feel a mixture of awe, delight, and sadness. Because I always think, "But what about Josh?" How does the imagination work for someone who has such an atypical brain? He doesn't have the tool of expressive language to practice using his imagination. How is his world supposed to get bigger and richer if he can't interact with it very much in a creative, expressive way?

One of the realities that always grieves me is the fact that Josh may never be able to read. Probably not. He has been working on learning his alphabet for over 4 years now and he still has a hard time with the first dozen letters. I think it's still worth it to try and keep challenging him but I have this growing feeling that he just might never get to the point of being able to interact with letters on a page or screen to engage him intellectually. If this is true, what will feed Joshua's inner thoughts and imagination?

They say that the autistic mind is more oriented toward the tangible and sensory. This seems accurate to who Joshua is. I've read him a million books but the characters and the narrative hold no interest for him. He only lights up when he sees a picture of something that he likes, like a bathtub or a spiral. He asks for Elmo videos because he's interested in the scenes where there are swirly pictures, not because he particularly has any affection for Elmo. What must it be like to be like this? What is it about certain songs or visuals that bring him so much joy? Does interacting on this level cause his mind to grow? Is that so important?

I guess it's through the gift of my imagination that I try to understand his very different mind. And it's by the grace of God and a mother's heart that I accept him for every bit of who he is.

Joshua and the God Connection

The other day, a friend of mine, who is also a mother of an autistic child, asked the question, "When should my son get baptized?" I've been thinking about this and other related questions a lot these days. Specifically, I am wondering, "What does spiritual growth and connection with God look like for a neuro-atypical person like Joshua?"

My son, Joshua would fall on the lower to middle functioning levels of the autism spectrum. He definitely has an additional diagnosis of "intellectual disability" or, what used to be called, "mental retardation". Josh generally only communicates about his immediate specific needs ("Want toast" or "Want music" etc.) and even this has been a big area of growth that we've fought hard for. He will not/ cannot respond verbally to the question, "How was your day" or "What did you do today?" Josh does not seem to function on the level of reflecting about his experience as a person (or at least in a way that can be accessed by other people). He understands tangible explanations like "First we are going to go potty then we will go for a ride in the car." but there is no way that he is going to understand anything close to "Jesus died for your sins" or "You can trust God to give you peace in your heart". Not even close.

So a verbal, conceptual link to God is out of the question for this kid. Unfortunately, this wipes out a lot of how I have come to know God and the spiritual life. Both of Joshua's parents are English majors who have spent a heck of a lot of our lives teaching the Bible and conversing with people about our personal spiritual journeys. If talking and concepts are out, then how am I to understand how God is going to reach this child?

Does Josh have a spiritual journey too? Does he have choices that he will make to chose God? Is there a witness in his world that speaks to Josh of the love, grandeur, wonder, mystery and delightfulness of God? I'm pretty sure that the answer is "yes" but I'm at a loss to imagine how that works. Maybe it has to do with a showerhead. It certainly is the thing in this world that reflects the most awe, reverence, and beauty for Josh.

One area where I have wondered if I've sensed the presence of God in Josh's life is during our bedtime prayers. Mostly, it is a pretty rote endeavor where I say, "Dear" and Josh says, "Jesus". I then say, "Thank you for..." and Josh says, "Showers" (or something that he likes or sometimes it's just nonsense). Then I say, "We pray for. . ." It's at that point that he surprises me. Often, Josh will "pray for" or speak out the names of people in his life, often people that I have not talked about in a while. Sometimes it's his old teacher or a caregiver or the names of his sisters. I do not prompt him. He just says their names. Maybe I'm imagining it but I feel like it's the one moment where I have a window into who Josh cares about. It feels like a moment where Josh connects with people and God that I can see and feel.

Another place where I feel the presence of God in Joshua's life is during musical worship at our church. Joshua goes to a Sunday school class for part of the time with an aide every week. However, most weeks he comes into "adult church" for the second half of the service, which is when the musical worship happens. Josh is always into it. Mostly, I think that it's because he opens up to the music (I guess that's true for a lot of us who are not autistic) but when I hold him, I feel like there is an element of his really wanting to worship as well. Josh is into the musical worship time in way that seems different from how he is into music at other times in his life. He even tries to "sing" along sometimes (which is sometimes disruptive and has to be managed).

I have a book called Autism and the God Connection that explores these questions, though not necessarily from a Christian point of view. It has some interesting points and stories but I think that the question of Joshua and the spiritual journey is one that I, as a mother, will have to "ponder in my heart" for a long time. As the person who has the most up close seat to the drama of Joshua's life, what will I come to see about how God reaches this amazing and precious person? I think that this is a parable that I will have for my whole life.

Thank You, People Who Work with Kids with Special Needs

The other day I was trying to count how many aids, therapists, helpers, specially trained babysitters, and teachers Josh has in his life. I lost count at 30. This doesn't even include the myriad of medical professionals who see Josh on a semi-regular basis. One tension that I often feel as a mother is that I lack the ability to truly express my gratitude to all of these individuals. How do you thank people who are giving a significant chunk of their days, of their lives, to people like Josh? During the holidays I think I bought $200 worth of $10 Starbucks gift certificates and wrote people many, many cards. I felt that it didn't even come close to really expressing the gratefulness that I feel. When I interact with these folks, I'm often juggling several children or running from one event to another so I find that I don't have the time (or brain energy) to really express thanks verbally.

One of the programs that Josh really enjoys is his swimming program at the Y. It's staffed by volunteers from the community and from a local university. Last week two undergraduate students were working very hard to try to figure out how to motivate Joshua to work on his swimming skills (rather than just bouncing around in the water like he prefers to do). As I watched them I felt, on a deep level, that these people did not have to do this. The local university is filled with students who are doing really "important" and career building things with their time. I am guessing that helping kids with special needs "learn to swim" is not careening them forward toward success in this world.

I think that people who work with disabled individuals are a wonderful and interesting lot. Even those who get paid for it don't really get paid much. There has to be a huge "labor of love" motivation. I'm not going to be naive enough to say that they are all just naturally giving angels with endless compassion. . . but there has to be some motivation of special love.

If I ran the world, people who work with individuals with special needs would make more money than Google engineers. I would send them all to a deluxe vacation in Hawaii for an annual bonus. They would be highly esteemed in society and given great rewards. People would declare, "Ah, these are the people who are giving with their whole hearts to those who have great need! I want to be like them!" Wouldn't that be awesome? Yes, I know. That's not going to happen anytime soon. Capitalism, productivity and all that.

One thing that I really like about the Kingdom of God, however, is that people who serve the least are seen very, very favorably. To Jesus, it seems that cleaning up after poop accidents and trying to teach developmentally disabled people new skills that it will take years for them to master if at all, are extremely worthwhile things to do with one's time. This is one of the many "upside-down" elements of the Kingdom of God that I both love and don't yet understand. I do know, however, that, because I am following Jesus, this is where I want to be headed-- into a reality where serving and loving the least is wonderful, beautiful and delightful.

Until then, I am deeply grateful for the folks who are loving and serving people like Josh.

To Alene, who knows and cares about Josh's GI problems more than anyone in the world next to his parents, thank you.

To Misty, who has fought for Josh to be able to get services, thank you.

To Anghelika, Liz, Jane, Pete, Yasi, and Chris, who help Josh to experience God in his own special way on Sundays, thank you.

To Rachel, who has hoped for Josh by making him work really hard, thank you.

To the many, many other folks who invest in Josh so that he can have a good life, thank you. Please know that I appreciate you with my whole heart and that God sees all that you do and honors you.

Marriage Wisdom for Parents of Kids with Special Needs

A few weeks ago we attended an event called "Pursuing a Healthy Marriage while Parenting a Child with Special Needs". (Whew! How's that for a mouthful of a title?) It was a fabulous use of time and childcare expense.

The speakers were a couple who have raised three children to adulthood, including a son with autism who is almost 30 and still lives with them. I think they could have sat there saying, "Blah, blah, blah, blah . . . I still love God." and we all would have left encouraged. Most of the people I know who have children with special needs have young kids. We're all pretty fresh to this journey. Most of us are so busy surviving that we don't have time to think about issues like "What's my kid going to be like when he grows up?" and "What will he do when we no longer have the school system?" These are really scary questions. But it was so encouraging being in the presence of people who have gone before us and have done well.

Here they were, two mellow, wise, warm people who were sharing honestly about their real but good lives with a sense of soberness but also peace. It was like a parable -- some mysterious but attention getting teaching that elicits a response. My immediate response was awe. They did it. They're doing it. And their faith, their marriage, their sense of humor were still intact.

But here's the really interesting thing that they said. We kept asking them, in different ways, "Uh, so how do you keep your marriage from going down the tubes?" Most of us have read about the horrific divorce rates for parents of kids with special needs (some say 80%). All of us feel the extra strain that we live with. Here's what they kept saying, "You have to constantly give the other person the benefit of the doubt. You are stressed. They are stressed. You have to find a way to both give each other extra leeway because you are both dealing with so much more pressure."

Now, in some ways, that's a no-brainer. It's such an obvious piece of wisdom. I might even have come up with that if asked. But being in the place that I was, asking that question deep within my heart and mind as I came to this event, it has become this perplexing thing stuck in my head.

How can I become a person who gives my spouse the benefit of the doubt more of the time?

How can I have the perspective that here is a person who is struggling with the extra, extra challenges of having a child like Josh? Most of the time I am thinking, "You are not home with this kid. I am doing more for him than you do. I get to be the stressed one and you should be the supportive one." (Yes, I'm really that immature/ yucky inside toward the man that I love.) It seems like another dimension of reality to be a person who regularly, if not constantly, keeps in mind how much my spouse is carrying and is able to choose to be empathetic toward him.

I've been trying it a little bit. I am praying for my husband in his role as a father. I am trying to express appreciation more. (After all, he is one hell of a dad!) I am trying to be less demanding and more willing to give the benefit of the doubt, especially when he's not doing well. Often, what this looks like is deciding to keep my mouth shut and just give him some space. Today I had a household feedback item that almost flew off my tongue like a little mosquito in search of blood. At the last minute, I thought about whether this was the time that would be best for him to hear this little tiny thing. It probably wasn't so I stopped and decided to mention it at another time. It was the tiniest of victories but very real.

Lord have mercy on me. . . on us. Please help me to live in the reality that you are FOR me more than Alex ever could be. Please give me the security that I need to be able to be FOR my husband. Please help me to contribute to the health of my marriage every day. I really, really want to make it.

The Great Party

Last night at our "Extreme Parenting" (support group for parents of kids with special needs) meeting, we reflected together on the passage in the Bible in Luke 14 about the Great Banquet. Jesus tells a story about a man who prepares a great party and has his servant go tell those who had been invited that everything was ready and that they should come. The passage goes on to talk about three people who made various (lame) excuses about why they couldn't come (purchased land, new cows, new wife). The host was angered but, instead of calling the whole thing off, he tells his servant to go get the "poor, the crippled, the blind, and the lame, " and to bring them to the party. He does but there is still more room so people from "the highways and the lanes" are brought in so that the house may be full and, presumably, as many people as possible could enjoy the party.

Now, studying scripture with different groups of people is so interesting to me. It really does feel like the Bible is alive because it "comes to life" so differently depending on the perspective that you have (as an individual or a group) when you come to it. This particular night, we were struck by the craziness of inviting a bunch of "people with special needs" to a party. Several of us shared, with some amount of pain, that our disabled kids don't often get invited to parties. Think about it, who would want a party full of people with autism? or ADHD? Many of our kids are not the people you think of when you imagine having a fun party. Somehow, they are forgotten when it comes to gatherings or playdates. And honestly, many of our kids have behavior issues that don't jive with having fun at a party. One mom shared that for a while her autistic son had a thing with chewing on power cords when going to other people's houses. We've taken Josh to birthday parties but he usually spends them trying to get away from the chaos and the noise of the other kids. He will always find his way to the back of a bouncy house where the motor and fan are and sit so he can enjoy the concentric circles of the fan and the humming noise, which he will mimic (for an hour if I let him). I guess he's having fun but it gets to be a little weird after a while. I have a feeling Josh is just never going to grow up to be that person who can walk around with a cocktail in his hand, ask people how they are doing, and charm them with delightful stories.

However, it struck us that Jesus is telling a story about a host (God) who WANTS all of these disabled people at his house. I can tell you that it was probably not easy to host a bunch of blind, lame, or otherwise disabled people in your house, especially in those days, where people with disabilities were not valued, empowered or integrated into general society. These were probably uneducated, unemployed beggars. Who knows what their social skills were like. One does not gain social capital from having a party for this crew. But they had need and clearly wanted to receive what was being offered. None of them made excuses.

And what of these people from the "highways and lanes"? My guess is that they were either travelers, homeless, or prostitutes-- also, not the population that one might invite to a lovely, delightful, socially smooth party. Yet this is what this host does. "Bring them in! Compel them to come!" he says.

It was a pretty profound thing to watch a bunch of parents of kids with special needs to realize that God is someone who wants our kids in His house. He would be willing to deal with a house full of people like them - and the baggage that they bring. And if the party/ banquet is an image for heaven, then there is a message in the scripture that there is room for a person like Josh in heaven. In fact, he might be more likely to get there because he is so clearly needy and in need. Joshua has never made an excuse in his life.

Sometimes I forget that there were disabled people throughout human history and in Jesus' time as well. As our little group has studied various scriptures that either mention or apply to the disabled, I've been amazed at how the scripture speaks. It is so full of application to our lives. As a group of parents of kids with special needs, we started having brief scripture studies/ devotionals because we are a group of people who are so constantly in need of encouragement, even more than venting (which is not always encouraging). I went away from our gathering full of thoughts and hope.

Oxygen Mask

Last week my daughter and I took a quick trip to Los Angeles to visit a friend. On the flight down, the flight attendant gave me the usual quick talk about how, if we were in an emergency situation, I should put on my oxygen mask on first then help my child with hers. Externally, I nodded in a respectful response. Internally, I was thinking, "Are you kidding me? If I were in a situation where there was no oxygen, am I really going to put a mask on myself first and let my child sit there without enough air to breathe? I don't think so."

Despite my emotional response, I've been thinking a lot about the image of a parent putting the oxygen mask on themselves first and then on the child. It makes sense. If the parent passes out or is incapacitated, the child isn't in a very good situation, is she? Ethically, a parent has a responsibility to put themselves in a situation where they will actually be able to help their child. Otherwise, trying to put the child first could actually be endangering the child.

I attend a monthly meeting for parents of special needs kids in my church. We call our little group Extreme Parenting. It has been a life line for my husband and I as we navigate life with Josh. We talk about the image of putting the oxygen mask on ourselves as a metaphor for what we are trying to do when we make/ take the time to meet with other parents, pray, vent, share, reflect on how scripture speaks to us as parents, and process the challenges of our lives together. We are taking care of ourselves so that we can be best equipped to take care of our kids.

It seems to me that there is a great need for parents in general (and, especially parents of kids with special needs) to take care of ourselves. My observation is that depressed, isolated, overwhelmed, angry parents of kids with special needs are not exactly what one would want for these kids. Yet, why is it so difficult for us to take care of ourselves so that we can best take care of others?

It's a new year. In 2010 I want to do the following things so that Josh can have the best mommy that I can be:

1. I want to keep going to Extreme Parenting and to give myself to that community.
2. I want to make sure that I am having regular date nights with my husband.
3. I want to go to the YMCA at least twice a week to exercise.
4. I want to keep writing on this blog at least a few times a month to process what is going on in my head.
5. I want to blow dry my hair and put on make up once in a while so that I'm not just living like an overwhelmed mom who meets needs all day long all the time.

If anyone reading this post has any other ideas, I'd love to hear them!

Quitting Coffee (or "How am I going to make it through another day of parenting on very little sleep?")

For the first time in a really, really long time, I am attempting to live my days without coffee. I have acid reflux that flares badly when I drink coffee, causing me to wake up in the middle of the night several times each night, coughing because I have stomach acid in the back of my throat. It's a little like being in a constant state of almost throwing up. It's very unpleasant and I have become desperate enough to finally heed my doctor's advice to go two full months without drinking coffee to see if it makes a difference.

How much do I love my coffee? Let me give you a little bit of my history with coffee.

When I lived in LA a few years out of college, I lived with a household of four women who all drank coffee in the morning. We made a big pot of Folgers or Safeway brand or some other cheap coffee. Maurine, who was from Northern California, had to make her own espresso in a little metal percolator (I think from Italy) which she put directly on the stove. She and her Bay area friends were very into their coffee. Very. When we went to conferences, they brought their own coffee with their own french presses. We used to make fun of them.

Now, I am one of them. I live about 3 minutes from a Peet's coffee and about two minutes from a Philz coffee (which is amazing). I have become that suburban mom who has several cups of coffee in the morning and finds excuses to get a cup from a coffee shop in the afternoon as well. I have evangelized several friends on the multi-sensory delights of Blue Bottle Coffee (an "artisan coffee" which is only sold in a few places in the Bay area. I am told that they won't even sell it to you if you confess to the vendor that you are going to drink it later than a week after they have roasted it.) Yes, it is a unique, snobby, passionate, probably addicted coffee culture that I swim in and I have given myself completely to it. I love me my coffee.

I have to implicate my husband as well. For several years now, the first words that I often hear from my beloved's mouth in the morning is "Who's going to make the elixer!" And when I do (or he does) that lovely aroma of freshly brewed coffee envelops us with comfort and encouragement as we endure getting three grumpy children ready for the day.

A big element of my coffee history is my son's sleep issues. Josh was not allowed to sleep through the night for the first year of his life because he couldn't go that long without eating due to his "failure to thrive"/ low weight issues. But even beyond that, this was a child who had big troubles in the sleep department. When Josh was 5 we found out that he had obstructive sleep apnea so he had surgery to take out some of his tonsils and adenoids. It's been a long, long journey. Basically, until this past year, Josh woke up in the middle of the night 6 out of 7 nights a week crying and stimming for several hours. In the fall of 2006, I had a one year old who slept well, a newborn who woke up hourly, and a 4 year old autistic kid who screamed and cried from 2-5am every night. I rarely slept for more than 2 hours at a time and never more than 5 hours total. I am not kidding. Sleep was just not something that God seemed to be giving me.

How I survived, I have no idea. I think it was one part faith, one part survival instincts, and in large part, coffee. I could absolutely drink caffinated coffee at 9pm and fall asleep as soon as my head hit the pillow. I was that constantly tired. This is definitely when coffee and I became very, very special friends.

Any of you parents of special needs kids out there feeling what I am saying? Anyone else turn to a little something chemical to help you make it through very long and challenging days? Maybe coffee? Maybe something else?

Currently, for the first time in many years, Josh sleeps through the night more often than not. . . and when he wakes up, he's usually pretty content to hang out in bed. In other words, my sleep is not horrible. My life is becoming more and more "not in crisis". We are slowly moving out of just surviving. There is a little bit of margin here and there, especially since the girls are in preschool.

But I was not yet ready to part from my beloved warm cup of energy. . . or so I thought.

It's been three weeks since I stopped coffee cold turkey. Shockingly, I still make it through my days. My life has not fallen apart. I am not completely void of energy as I feared that I would be. Could it be that I have a deeper source of energy than coffee?