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?

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!