A Wonderfully Normal Mother's Day Dinner at a Nice Chinese Restaurant

He was a perfect gentleman.  He used his fork to eat his noodles and broccoli.  He used his words to ask  for more ice.  He waited patiently for more meat and he used his napkin.  Josh handled dinner out tonight with absolute peace and grace.  It was the best Mother's Day of my life.

This year I took a great, risky leap forward into the world of "what normal families do" and suggested that we go out to dinner as a family at a nice Chinese restaurant.  I was pretty nervous about it all day.  We've had many powerfully stressful moments at restaurants and have tended to avoid them almost entirely as a family.  It's hard enough to manage Josh's sensory needs but our girls can also be a handful in new situations.  However, in my heart of hearts, this is what I wanted.  I realized that it meant more to me to do something "normal" like going out to dinner than to have a massage or any other material gift.  And I thought we might be ready

Of course, we were still strategic about our outing.  We made reservations for 5pm and asked for a table way in the back corner.  We brought Josh's headphones and ipod in case it was too loud or in case there were crying babies around.  I prepped the girls all day on how we behave in restaurants and how we might need to leave if their brother was not doing well.  I thought through the menu ahead of time, planning for what might work for the kids to eat.

It went really well.  Alex and I even had a little bit of adult conversation about how our morning had gone at church while the children ate their food quietly (momentarily).  After the food was eaten and the fortune cookies were inhaled, we drove down the street to our local municipal airport and yelled at helicopters together.  Josh sat in the car, blissfully listening to music, laughing his head off at something only known to him.

One thing that being a mom of a special needs child has taught me is that "normal" can be so precious.  We don't always get "normal".  In fact, being different is really the true constant -- for most of us.  And "normal" is really so subjective, really.  But, every once in a while, you get to the place where you get to do something that (it seems) many other people get to do . . . and it's so nice.

Respite and the Desperate Life

Recently, the woman who has been Joshua's respite provider for the past 6 years moved on to a different job. In the context of the disability community, respite is care provided by a trained person in order to give the primary caregivers a break. Josh receives 24 hours per month of respite service from our local regional center, the organization that dispenses services from the state and federal government for developmentally disabled individuals.

Although I totally understood her decision, we were very, very sad to lose her. She was a part of our family (as was her daughter, who also served as a respite provider for a brief time). A few weeks after her last day, together with another family who were also her clients, we threw her a goodbye party. I made a lot of food and a huge chocolate cake for the occasion. Then, in front of her family, we attempted to share in words, the appreciation that we couldn't possible capture or express.

In the past six years, this woman has cooked for Josh, taken him on many outings, she's bathed him and has been a critical part of his toilet training. She has gone way beyond the call of duty in constantly being on the watch for products that might help him with his many challenges. She has cleaned up many potty accidents and has calmly weathered tantrums, including ones where he's bitten her. Joshua loves her and sometimes even asks for her by name when he is upset. She has truly been an angel sent from heaven to us. She has helped my life, managing three small kids, to work. She has helped me to survive. My life feels a little bit less desperate when I have respite help.

The transition to trying to find a new respite provider has been rocky and aggravating. At one point, it was looking like I had worked out a path for a person who I trusted to be able be trained and activated to be an official respite provider. However, after a long afternoon of trying to work the complicated logistics out, I eventually found out that, due to budget cuts, she would probably end up being paid less than $5 an hour, which made it untenable for her.

It can be unbelievably frustrating to try to attain and manage services for the developmentally disabled. They are out there but you often have to jump through time-consuming hoops in order to even be able to check them out to see if they are even appropriate for your child. It feels to me like the system is set up to work only for parents who have limitless desk time, patience, and savvy. I could spend so much energy finding, requesting, and managing help that I would have no energy left to actually spend quality time with my child.

Honestly, I have been driven to the brink many times and I consider myself to be a person with a LOT of support in my life. My husband is an amazing partner. My school district, my church, my friendship network, these are all high quality and full of compassion, care and resources. So I often wonder, "What about people who are less supported and resourced than I am?"

According to our local paper, two days ago, a mother in a nearby town shot and killed her 22 year old autistic son and then killed herself. http://www.mercurynews.com/sunnyvale/ci_20120851/sunnyvale-police-mother-killed-22-year-old-son He had recently aged out of school district services and she was overwhelmed by having to care for him all day long by herself. I've been reflecting on this story all day. I've been thinking about how, although I can't imagine taking these actions, I can understand why she did it.

There is a profound sense of desperation and despair that can descend when you can't find the help that is necessary to care for a person who has tremendous needs, even if that person is your child. I wish our society better understood the cost of not making respite more accessible to parents of individuals with developmental disabilities.

If you know anyone who is a caregiver to a child with special needs and you are struck by how much they manage don't say to them, "I don't know how you do it" or "You are so amazing and so strong." Think of one way that you can lighten their load and offer to be of help to them. We need it, even if we are not saying anything to you.

Joshua and His Grandfather

It's strange to me that of my father's five grandchildren, Joshua got to spend the most time with my dad. Josh was six when my father died. Hope was three and Anna was two. My sister's son was a year old and her daughter had not been born yet.

As I approach the third anniversary of my father' death, I've been thinking about what kind of grandfather he was. . . and the experience of grandfathering that he got to have during his life. My dad loved Josh with such a beautiful love. As you can see in the pictures above, my dad really gave himself to trying to connect with Josh despite what a different type of child he is. My father was a very composed, dignified, introverted person. Prior to his interactions with my son, I've never seen him go down a slide in my life. I don't remember him being a big "reader of books" to my sister and me. But I think that my dad knew that Josh was very special and he was willing to stretch his own personality and comfort zones to connect with this non-verbal, sensorily overloaded, non-Korean, non-blood connected kid. Joshua was his first and real grandchild, pure and simple.

During the final year in which my father battled cancer and endured eleven rounds of chemotherapy, one thing that he made sure to do was to create a fund to help take care of Joshua in the future. I was so profoundly touched that my father, who had worked so hard these many years of my life to provide for me, was now providing for my son, who's future was so unknown. My dad expressed, through his "language of love" of provision that he loved Josh and that he loved me.

The other day, Anna asked me, "Mom, did I ever meet Papa?" I showed her some pictures of herself, as a toddler with her grandfather to answer her question. I'm so sad that my girls will not grow up knowing their grandfather. Yet, the memories of my father's love for my son are a great comfort to me.

Embarrassment, Shame

I've been thinking a lot about embarrassment and shame. Josh has never exhibited having a sense of shame. He does not hide things. He has never lied to me. As far as I have seen, his brain is not wired to be socially connected or aware enough to experience shame. He is nine years old and he does not care if anyone sees him naked. He just walks through life being pretty much who he is and he does not put any of his energy into managing other people's opinions of him. Josh doesn't care about that sort of thing at all. It's kind of beautifully free.

My observation is that the rest of us spend lots of time and energy managing our own images. If we are honest, every conversation, every expression, (even every blogpost!) has some element of shaping how we want others to see us. And at the very bottom of that is a sense of insecurity, fear that we are not quite OK just how we are. We are concerned about how others see us and when we find ourselves in situations where others might (or do) see us in a negative light, we are embarrassed and ashamed.

This develops amazingly early in typically developing people. For example, the other day, I had given Anna, my five year old, some smoothie for breakfast. We were running late so I put it in a sippy cup to drink in the car. Generally, we don't use sippy cups anymore because everyone can handle normal cups but I did manage to dig one out. Anna hadn't finished the smoothie in the car so I told her that she could bring it into school with her, put it in her cubby, and finish it during first recess. Anna thought about it for a moment and then covered the sippy cup with a jacket and carried her backpack awkwardly over them both.

I said to her, "What are you doing? Here, let me carry that for you."

Anna whispered in a greatly annoyed, anxious voice, "No, mom. People might see that I have a sippy cup and they might think that I'm a baby!"

Now, I know that it's quite developmentally normal for kindergarteners to want to differentiate themselves from "babies". However, I was struck her desire to hide, to manage what others saw of her. She was developing a fear based impulse to be hyper aware of how others might see her. I know that some people live in this fear their whole lives. Maybe she's right. Maybe the other kids would make fun of her but the mom in me was still sad to see the chains of image management beginning to have a place in my innocent baby's life.

I put the picture of Adam and Eve at the top of this post because I've been thinking about their story. It's a story of the freedom and innocence that was God's original intention for us crushed by the sinful reality of our hearts (and this world). They were naked in the garden because, being totally dependent on God, they did not have to cover themselves up. They were free to be fragile creatures and still be okay because they were in a complete trust relationship with a God who fully took care of them. Only with the advent of independence came the need to cover and protect themselves. Independence from God begat shame, anxiety, fig leaves, image management and so much more.

I long for the freedom and innocence of the garden. I get so sick of living in this world of deceptive image management. I'm tired of being a woman in a culture where the message is that you have to be super skinny to be physically affirmed. I wish I could stop wondering if I was smart or friendly or charming or witty enough in this or that conversation. I yearn to be able to live just one day not being concerned about how others are evaluating me. Wouldn't that be so amazing? Just to be who you are and not be worried about it? There is a part of me that admires that part of my son who is free in this way. He just is who he is, take him or leave him.

I had an encouraging moment with my other daughter, Hope, the other day. We are needing to find a better school placement for Josh so we checked out the special education class at Hope's school (Josh is currently at a different school). When I told her that it was probably not a good fit for Josh, Hope started to cry.

"But I want Josh to go to my school!" she lamented. "I want to see him everyday, Mommy!"

As I comforted her, I cherished the fact that, Hope is not (yet) concerned about being associated with this kid who walks around flapping and making strange noises. She is aware that he is different but she is not embarrassed by him. When we go out in public and Josh has his hands down the back of his pants, she just says, "Hands out, Joshie!" Her love for him trumps shame. I love the freedom of this innocence. I am writing this blogpost to help me to remember it.

Our Horse Whisperer

In our quest for physical activities for Josh, this fall we were able to connect with a woman who owns several horses and does private lessons for kids in a nearby town. The first meeting was quite astonishing. Josh immediately went up to one of the beautiful, calm horses with utter confidence. He patted the horse's face, nuzzled his own face in their the horse's flank and sniffed his mouth. Then my son started to giggle and smile. Joshua thoroughly enjoyed being around the horses. I have no idea why. After giving Josh plenty of time to "hang out" with the horses, we asked him if he wanted to ride one. Josh whispered, "yes" with a tone of seriousness and awe.

The ride itself was pretty uneventful. Josh had to work pretty hard to stay on the horse given the ups and downs of the trail. I think his low tone core muscles got quite a work out. Josh was very quiet during the whole ride and even sang a little bit along the way. Clued out suburban mom that I am, I had worn some cute sandals with a bit of a heal so my feet were heavily blistered by the end of our 45 minute trek. I didn't care one bit. We found an activity for my son that he enjoyed and was good for him. I was thrilled!

At the end of our time, I nervously asked the owner of the horses how much she would charge. It is quite common for people around here to charge $100-$150 an hour for therapeutic riding for special needs kids. I have done reams of paperwork trying to get our insurance to cover even part of it to no avail. The woman, who obviously had a heart for kids like Josh, said to me, "Could you folks handle $20?" It was music to my ears!

Since that day, we've gone riding about 5-6 more times. Josh always has a quiet but happy demeanor. This last time, we were apparently taking too long to get things going so Josh went and found a step stool and placed it next to a horse, took my hand, and said, "Wanna go upstairs on the horsey." Once up, Josh was content and calm.

There is a movie that came out a few years ago called "The Horse Boy" about a family that takes their autistic son to Mongolia to hang out with horses that are inexplicably soothing to him. I don't know about all of the mystical stuff that the movie explores but I do see that there is something about the horse/human connection that is mysterious. Never having been a horse person, myself, I haven't experienced this personally.

 My father was a horse person, having ridden them extensively in his youth in Korea. Later in his life, he had the honor of being on South Korea's first equestrian Olympic team ever for the 1964 Olympics in Tokyo. But for me, horses have always just been expensive, inaccessible and smelly. We could never afford to get time on horses as we were growing up so they were just big creatures on TV to me. Now, I have more respect, more questions and more of a sense of intrigue about the gift of horses.

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.