Priorities

I have been feeling a bit morose this week.

My best friend Erika is coming home today. She has been halfway across the world in Indonesia with the Peace Corp for the past two years. For months, I have been planning a trip back to my hometown to visit with family, get some time away and peace in the country, but most importantly to catch up with my very dear friend. She hasn't even gotten to meet Benjamin, and the last time she saw Gabriel he was just a few months old.

The time comes...and I am still here in Lubbock. I am waiting--waiting until after Gabe's private speech and occupational therapies start for the summer; waiting until after the autism treatment study that Gabe and I are taking part of'; waiting until after the summer appointment with the developmental pediatrician to talk about medications and diet restrictions and weighted blankets and referrals to other specialists.

I keep postponing the trip, pushing it to a later and later date, but my ever-increasing fear is that I am going to keep waiting and waiting and the moment will never come.

The reason I have been so down lately is not about the trip. It is the dawning realization that for my little family, our center of gravity revolves around Gabriel and his needs.

Michael and I both knew when we received the diagnosis that things were going to be tough, and that caring for Gabriel was going to require a great deal of our time, energy, and patience. We accept this as a fact, but I don't think until recently we fully grasped the implications. We understood the concept though the reality of it has been a bit harder.

What makes me feel the guiltiest is how this is affecting Emerald and Benjamin.

Like other families, we want to go out and do things together--go to the drive-in, eat dinner in a restaurant, take the dog on a hike out on the park or have a picnic...the entire scene changes when you add Gabe to the mix, though. Public places, loud noises, big crowds, bright lights or colors, changes in weather...anything can and will set Gabriel off, and we are left cutting outings short while wrestling a screaming, panicking toddler all the way to the car.

On Monday, the Peacocks took the kids and me to Jump'n'Jungle while Michael was home sick and resting. The first hour was fun, with one other family there we had the run of the place almost to ourselves. When we made a quick stop by Barnes and Noble, the heat and stuffiness that was merely uncomfortable for the rest of us became unbearable for Gabe. He started panicking, thrashing about, screaming, hitting me and himself and fighting as hard as he could. We were forced to cut our trip short, preventing Beth and David from getting lunch.

Thursday we all needed out of the house, so I loaded the boys up in the big double stroller and we went out for a walk. It was about 10 minutes later, standing on LCU campus, that I realized we had absolutely no where to go.

If I had just Emerald and Benjamin, the possibilities were endless. While Gabriel was in school, we would walk to the library to check out a few books and stay for the preschool story time; we would walk down to the park and feed the ducks and swing and slide and run and play; we would walk to the store and buy food for a picnic, or go visit Glo at work, or walk to Dairy Queen and share an ice cream sundae. If we were bored or restless, we could just get up and go and do something, have an adventure, or just get out of the house.

With Gaby though...I have to be constantly vigilant, able to drop everything and take off running after Gabriel if he gets overwhelmed and runs away. If he has a meltdown, it takes all my strength and concentration to wrangle him away from the situation. He is only about 35 pounds, but he is surprisingly lean and strong, and when he is in meltdown mode, he can and will hurt himself or anyone around him without ever meaning to.

A common misconception is that an autistic child is just throwing a temper tantrum. Nothing could be further from the truth. A tantruming child is one that is seeking to manipulate--they are in constant control, and they regain their composure as soon as they get their way. It is a power trip and they revel in having that power over you. They are directly trying to illicit a response from their caregiver and though they will threaten and you may worry, their sense of self-preservation will prevent actual physical bodily harm.

When an autistic child has a meltdown, however...it is scary. They have genuinely lost all control. They will hurt themselves or others, because they do not have the ability to regain their composure on their own--they are scared, because they have no control over it, and they desperately want to calm down. They can learn to identify triggers and be taught how to head it off before it begins, but it is not something they inherently know.

So, we are out on this walk and we can't head to the park or the library in case Gabe has a meltdown or decides to run off, because I cannot abandon Emerald and Benjamin if something happens. As we wandered the streets near our house trying to find somewhere to go, something to do, Gabriel started straining against the harness of the stroller. Putting his feet on the sidewalk and pushing with all his might, he began yanking at the buckle binding him down, screeching and fighting. With Benjamin still buckled in, I tried picking Gabe up to soothe him, but I don't know whatever he had seen or felt that had bothered him or if it was still affecting him. We were stuck there on that sidewalk, Gabriel thrashing and tossing his weight around, smacking his head and eyes and striking me wherever he could reach, for nearly ten minutes. I tried bribing him with drinks and snacks to no avail.

When I finally did regain some measure of control over the situation, we promptly turned around and headed back home, depressed that even a simple walk was beyond our capabilities.

Before anyone says or thinks it: what would my ability to drive change a thing? I could get them in their carseats and start driving...and still have absolutely nowhere that I could take all three kids. We would burn gas that is $3.10 a gallon (I write specifics because it is going to be interesting to see when Emerald starts driving and it is $7) tottering around town, completely unable to get out anywhere. Admittedly, we could get fast food snacks, which I barely tolerate as is. Eating out is a costly venture which we don't get to do that often, and when we do we generally get fast food with Daddy and bring it home because we can't brave a restaurant with Gabe.

I am not complaining. As I said, we knew this would be hard when we started out. Just lately, as I struggle to adjust to having all three kids all day every day again, a bit of melancholy has set in. I have been a bit of a sad sack lately, and I am searching for some sort of solution, relief from this issue that plagues me. 

A rather depressing entry, I will admit. I apologize and assure you that the next one will be full of cute babies and fun adventures and silly anecdotes.

--Andie