The only time we don’t worry about Alex is when he is sleeping. And even then there is some degree of monitoring. I have, out of necessity, become an incredibly light sleeper. At one point, I woke up every 2 hours to listen for his sounds. It was easy enough to make sure he had not escaped the house: if he was awake, which quite often he was, I’d hear him bouncing, or “ah-gee”-ing, or crying. It’s a given that if Alex is awake, he’s making noises and in constant motion. Paul and I bought devices to mask the Alex noises. Note I said “mask” and not “drown out” because I can still hear him, even WITH the ocean surf roaring, the monks chanting, and the fan on its highest setting.
An offshoot of constantly listening for Alex’s sounds is that we all hear “phantom” Alex sounds. We think we hear him, only to realize: “Wait! He’s not even home!”
I think my sleep disturbances stem from always having to be “on”. On guard, On alert, On watch at all times. One way my husband and I cope with this stress is by taking turns. We take turns going to church, going to children’s concerts and plays. We alternate which play performance we attend, or switch off spring/winter concert. These days we try to get a respite provider for Alex so we can attend certain events together, but when Alex was younger this often was just not possible. Paul even missed one of our son’s weddings because we had no one to stay home with Alex. We had taken Alex to our younger son’s wedding in another state a few years earlier. The airport was a nightmare, the plane ride almost as bad. By the time we got home we were utterly exhausted from the ordeal.
When my husband’s twin brother died, Kathleen offered to stay home with Alex so we could go to the funeral and we gratefully left the two of them at home. The very thought of bringing Alex to an unknown church packed with people, for who knows how long, with us being grief-stricken, trying to keep him quiet and still, and not being able to predict how he would behave, struck terror into my heart. I did not even want to consider bringing him with us.
Special events are not the only times that are difficult. Vacations were, and sometimes still are, extremely stressful. When Alex was small, he’d be okay for one night away from home, but the second night he’d put on his coat and pace back and forth in front of the door. We had to barricade the door and sleep with one eye open for fear he’d try to get out of the hotel room and head for home. It wasn’t easy taking him places. Where would we be going? How long would we be there? We’d have to bring toys, food, books, clothes, extra headphones, etc., etc. We had to consider what might be upsetting to him in that environment. How many people would be there? What if he jumped up and down and bit his hand and made lots of noise? What if the environment was too noisy?
In any situation, one of us was always at the ready to leave with Alex when he became over-stimulated by lights, sounds, crowds, or whatever might be causing him discomfort. I go by myself to many parent nights, science fairs, concerts, plays, and so on, while Paul stays home with Scott. Now that he’s older, we occasionally leave Alex with a respite provider so that we can attend an event as a (almost complete) family. The decision we faced each time: feel guilty for leaving him behind, or bring him along and not enjoy ourselves at all.
One year, Alex went to California with a group for a facilitated communication conference. Six days without him? It felt practically obscene how much I reveled in the freedom. We could go anywhere anytime we wanted; we weren’t restricted by bringing Alex and worrying about all the different scenarios of what disaster could happen; we weren’t restricted by what time to leave/return home based on when he was getting picked up/dropped off by his community support worker. It’s been nice to have our other children grow up and take charge of Alex, the house, and the dog, so Paul and I can get away overnight from time to time. It’s wonderful to have that time to escape the routines.
You might think all of this would fracture our family, having to split ourselves up like this so frequently. On the contrary, we know what it is to sacrifice our needs and wants to help each other. It has welded us firmly together in a way that nothing else could have. We are fiercely loyal, supremely protective, and ever-vigilant in watching over Alex. When we are all united in purpose, how can we fail? I know we won’t fail. I know with the strength, perseverance, compassion, and wisdom we have gained that we will not only succeed, but do it amazingly.