Sibling Revelry

     We have a pot on our front porch in which a desert quail pair have made their nest. Eagerly we watched as one after another egg appeared. With a grand total of 15 eggs, Momma Quail settled in to sit on them day after day. We left on a 10 day trip figuring we would miss the hatching, but much to our delight, Momma and eggs were still here upon our return.

     Yesterday, when C cried to me because no one has invited him over all summer, I wondered again about our choice to have only one child. A choice made for a variety of reasons, and a decision made largely before C was born. Husband and I each have a brother, and while there were many times in my young life I would’ve paid someone to borrow my brother on a permanent basis, I now consider him the closest of friends. I regret C won’t have any siblings, nor any cousins, and wonder if someday he’ll feel all alone in the world. 

     Yet I knew, deep in my heart, that I only wanted one. Our early and later struggles with both C’s health and developmental challenges further solidified this decision, as we felt it imperative to give C our full attention. I look at large families with both admiration and awe for the energy Moms and Dads seem to have. Husband and I both recognized our own fatigue, partly due to our starting a family later in our lives as well as due to the issues we faced with C.

     I know families with lots of children, and they parent their brood with a grace, patience and skill I simply do not possess. A friend and her husband, after giving birth to 5 biological children, decided to foster, and subsequently adopt, a child with extreme bipolar disorder, fetal alcohol syndrome and asperger’s. Another friend and her husband have adopted 5 children, all on the autism spectrum, and are raising them off the grid with homegrown food, homeschooling, and the constant love and attention they need so desperately. In my book, these people are saints.

     As we watched this evening, another large family was born. A number of the 15 eggs hatched in our pot, and Momma Quail kept reigning the hatchlings in with her wings and ensuring they didn’t make the jump to the ground before they were ready. I reflected on what must be the joy of having a large family at the same time I reminded myself that having another child simply for a playmate for C would not have been a good decision. As he watched the pot through the window for glimpses of the babies, C announced he’d like to be a quail, and when I asked him why, he replied he’d like to know how to fly. Although I can’t help but wonder if it isn’t just that he’d like 14 playmates to call his own.

Gospel of Thomas

     C wants some gold dust. He found out about gold dust from a Thomas movie, which is where all great world truths in C’s life originate. There are specific instructions for making gold dust that include putting gold glitter into a whistle. According to C, we can “get rid of our cars because when we blow the dust through the whistle, we can travel wherever we want to go in just a second.” Gold dust, apparently, is the latest in supersonic travel methods.

     This was told to Husband and me last night, complete with teary eyed passion and belief so strong it’s on the magnitude of Santa Claus and the tooth fairy. What, I wonder, will happen when he discovers it isn’t real? Again, I envision the innocent child heartbreak when a youngster finds out Santa Claus is really only Mom and Dad.

     Yet I hope that C, like a younger version of myself, sees the magic in all things Santa Claus and gold dust even after finding out the hard, cold truth. I still can’t bring myself to say Santa Claus isn’t real; rather we just can’t see him. Sure, I eventually understood that Mom and Dad put the presents under the tree, but I still believed Santa Claus was out there somewhere.

     After all, we all need some gold dust in our lives.

Engaging the Senses

     “I told you to eat your cookies before eating the rest of that chicken.” I can’t believe I just said that to my kid. I’m not sure those words, in that order, have ever been uttered before. After the words came tumbling out of my mouth, I wondered, “Did I really just say that?” 

     For C, eating a cookie, one that most of us would fine plain, boring, and not nearly sweet enough (translate organic, and minus most of the things that usually go in cookies, like sugar, eggs, butter, and flour), is much harder than the chicken he had for lunch. Giving him a piece of cake would be the equivalent of giving most people a fried rat in eyeball stew. This is life with a sensory-afflicted child who is terrified of food.

     Yet all around are signs of huge success. C went to the dentist today, for the third time this year. The first visit included walking into the office, checking out the chair, and meeting the dentist - one of those cool, kids only dentists who specializes in children who fear the dentist (can I go?). The second visit involved actually getting in the chair, looking at all the tools, opening his mouth for the dentist, and allowing the sainted man to brush his teeth with a regular, dry toothbrush. This visit today included a brief but full cleaning, complete with a very small amount of unflavored cleaning paste. There were freaked out faces made, slight gags, and lots of looks to Mommy for positive reinforcement.

     But he did it. Amazing.

Needles in a haystack

     The first winter of C’s life, his pediatrician recommended a vaccine for the RSV virus. RSV is a common cold virus that can be dangerous for preemies because their lungs are often compromised. In order to receive the vaccine, a baby has to qualify based on how many days they were on a ventilator, how early they were, how sick they were, etc. There is only one company that makes the vaccine, and there is a very limited amount produced. Every year, each doctor has to cull their patient lists and decide who gets the vaccine.

     The summer he was just over one, C contracted an RSV-like virus, and nearly had to go back on a ventilator because he was so ill. We were on the phone with the doctor’s office, at times hourly, monitoring how he was doing. We were in the doctor’s office several times a day checking blood oxygen levels to make sure C was breathing well on his own. Because he was so ill that summer, he was on the list to receive the vaccines during his second winter as well, which is fairly unusual.

     The synagis vaccine is given monthly during the winter months; where we lived, the winters are extraordinarily long, and the shots are given from early October until late May. They split the doses and the amount increases by weight, and by the time C was starting his second year of the shots, he was getting 4 shots each time we went to the doctor’s office.

     Additionally, the vaccine costs an enormous amount of money. They do, however, top out an an upper amount. We topped out near the end of the first year and for all of the second year at that upper amount, which was $3,750 per month. Per month. Thankfully, insurance covered all of that amount, but I wondered endlessly about children whose families could not afford them, whose lives, like C’s, perhaps depended on those shots.

     It’s no wonder that for a good 18 months after stopping the shots, he would scream every time we entered the doctor’s office. It’s taken years to get to the point where he would allow even the most cursory of exams by a doctor. Several times, when getting bloodwork done, it took 6 techs to make it happen. They rarely believed me when we came in; C is small and he appears mild-mannered. But they learned the hard way.

     Now bloodwork is eased by a numbing creme I put on his arm an hour before we go. In the back of my mind I wonder if this is smart; shouldn’t kids learn that sometimes there’s pain in life? Yet I figure this child has had more testing, tubes, pokes and prods in his short little life than Husband and I have in our entire lives combined, so I let it go. Like so many things with C, while we recognize the potential future impact of our actions, sometimes we have to make the choice to help him now and worry about the future later.

There is no off switch

     There are two times when I don’t feel like I’m “on” with C. When he is somewhere with Daddy, or when he is somewhere with Ga (that would be Grandma, a hangover word from when he couldn’t say “Grandma”). The rest of the time I feel like I am “on” in some way. Even at night, given our continued use of a baby monitor.

     School is no different; I dread the ringing of the phone. He is sick, he has eaten something he’s allergic to, or he’s finally sung “Brick House” (one of his favorites) to the principal and has been kicked out of school.

     This child is a constant. I suspect, like my mother has sometimes gently suggested, that I am at times a bit too wrapped up in C. I freely admit to losing any sense of self after having C, and am now working very hard to regain it. Yet my answer to that comment, and to myself when I start to think about it, is “How could I have done it any other way?” As parents, we all just do what needs doing, and I firmly believe C needed my full and undivided attention. It’s not a sacrifice, it just is.         

Eyes behind ya

     Like my mother told me, I tell C I have “eyes in the back of my head” when it comes to him. It worked with me as a kid; I believed my Mom could see everything I was doing. But C isn’t that easy. He. Must. Test. Constantly. “Mommy, without turning around, can you see what direction my train is going?”

     Not realizing yet I was being tested, I said, “Forward.”

    “Nope,” he said, “it’s going backward. Why couldn’t you see that with your eyes behind ya?”

Rules

     C’s life is governed by rules, both his own and the world’s. He finds it difficult to prioritize, generalize and recognize when those rules should be broken. I wish I knew the magic formula to make a rule stick - as we’ve many times tried to create rules (don’t scare the dog) that just don’t seem to make it on his list of rules to live by. It’s his version of selective hearing, I guess.

     Recently he was reading me a book from school, and I noticed he was leaving off the word “and” when it came at the beginning of a sentence. I pointed out he was missing a word, and he said, “You’re not supposed to start a sentence with ‘and,’ so I’m not reading it.” The child has the memory of an elephant, and usually can recite exactly what I said, when I said it, what I was wearing when I said it, and what the weather was doing when I said it. So teaching C the subtleties of why it is okay to break a rule every once in awhile without opening the floodgates is a challenge for which I am sorely unprepared.

Perspective

     As we prepare to head back to the mountains for an autism day camp so outstanding we’re willing to drive 12 hours to take C (and, I admit for the cooler weather), I am reminded of the various reasons we left our paradise to move south to the desert. We’ve lived in a ski town before, before we had C (and then we moved to the desert, and then we moved back to another paradise, and now we’re back in the desert). After we had C, Husband  would ski on Saturday and I’d go on Sunday. Not ideal. Despite the fact that 5 feet of snow in a single weekend didn’t much make a dent in the lives of folk who live there (us included), the winters did get a bit long with a small child who hadn’t learned how to walk yet, much less ski. C eventually did take some ski lessons, but because of his low muscle tone, it became clear he wouldn’t be tearing up the slopes anytime soon. 

     Yet first and foremost, were the school challenges we faced in paradise. Once we pulled C from what should be known as “The Terrible Montessori Experiment,” we enrolled him in the regular public school. The catch was that we didn’t enroll him in the regular public school in our town. The public school in our town had failing scores year after year. We knew the truth behind those failing scores, and they didn’t phase us. A school’s rating doesn’t generally tell much about the special education program, so we tend to take ratings with a grain of salt. The challenge in our public school was the fact that 82% of the students were English Language Learners. First generation English language learners. Lest you think I’m saying something I’m not, let me clarify. Our issue was not the racial makeup of the school; we considered the diversity, and the opportunity for C to learn Spanish in one of the innovative dual language classrooms, advantages. However, we consider C an English language learner. We have observed, over the years, that he has operated much like a student learning not in his native tongue. The subtleties of a language must be learned by immersion, not by reading a book. And to put C in a situation where he, like most of the other students, would be “learning” the language, and all the social intricacies of that language, was not a good idea for him at the time. He needed to be in a situation more balanced, one where he had the opportunity to interact with kids who already knew the language. So we enrolled him in the school in the next town, which had about a 50% ratio of ELL students to native English speakers. And he flourished.

     The fatal flaws? The school was 25 minutes away, no bus service, and snowy, icy roads to contend with. All his friends lived in another town. Not the neighborhood school we pictured when we envisioned his elementary school years. Now, in the desert, we’re 5 minutes away from school, and almost all the kids in town go to the same school.

     Do we miss it? Desperately, at times, especially as the thermometer is always over 100 degrees this time of year, with no end in sight. Yet Ga and Pa are 15 minutes up the road, C can ride his bike all winter, and school is going well. The opportunities afforded to him by living near a large metropolis are endless. And the mountains will always be where they are, eventually, I’m sure, beckoning us back to paradise.

Kids on steroids

     I’m often looking for a quick explanation to give to people when they ask what it’s been like raising C. I realize it’s difficult for people to understand what other people’s lives are like, and I want to be able to share in a way that helps people understand both the challenges and the joy.

     I think having an autistic child, no matter where on the spectrum they fall, is like multiplying everything by 10. Much of what C does is hyped up in one direction or another. While I have been thankful not to have to attempt to figure out how to teach C to read, I would give just about anything to get him to eat a new food. Learning the states and their capitals? No problem. Blowing his nose? A zillion steps that have taken years to process.

     And skipping developmental steps, or going through them at different times than “normal” have also presented interesting challenges and non-challenges as well. While my friends were desperately child-proofing every single thing in their homes to protect their toddlers, C was busy working on sitting up. We never really had to worry about him hitting his head on the coffee table; by the time he decided he was ready to walk, he just stood up and walked. There was no toddler stage in our house.

     Not only are tasks often out of whack in terms of the ease or difficulty with which they are learned, but emotions are often very strong as well. While the tantrums and extreme distress are difficult for not only us, but for C as well, it’s tempered by the great and absolute joy he experiences over minute little details in life. New toothbrush? Tantrum. Getting an extra 5 minutes of computer time? Sheer giddiness. Outgrown shirt? Tears. New yellow shirt to round out his “closet rainbow?” Worthy of a press release.

     Husband and I often laugh at ourselves in wonderment at the fact that we would probably have no idea what to do with a “typical” child. And honestly, we consider that fact a bit of a badge of honor. Not that we deserve a pat on the back; rather that we are in some kind of cool, secret club. Sure, the dues can be high, but it’s worth every figurative penny.

Where did everybody go???

     “Mommy, I have no one to play with. Who else can play with me? There’s no one else in my house. All of my imaginary friends are on vacation.”