Now initially, I was excited about half day kindergarten. In my dream world, I had typically developing kids with no special anything, and I envisioned Sophia getting off the bus, feeding my children typical American lunches such as peanut butter and jelly sandwiches on white bread with a banana and a glass of milk, and the dashing off to the science museum, zoo, or park. At the science museum/zoo/park, they would become exhausted, fall asleep on the way home, I would tuck them in for an hour and a half nap while I made a gourmet meal for all to enjoy that evening when father came home. POOF. Pretty sad that my dreams are so pedestrian that it would make a nun yawn.
Well, yesterday, we had an exciting packed day. The itinerant therapist would be coming late, which gave me time to run errands after we drove all over h*ll's half acres (also known as Syracuse) to pick Zach up from school. As I hopped in the car with Sophia after forcing her to down her lunch in 3 minutes so that we wouldn't be late in picking Zach up, the car wouldn't start. I tried and tried again. The key would not turn! I go to call Steve for help, and realize my cell phone has died. Uuggh. I run in to the house realizing that the minutes are clicking away and that any moment that passes is a moment that brings me closer to being late to pick up my dear son. I panic. I grab the wireless phone and back to the garage I go. I dial and Steve thankfully picks up. In my panic, I rudely explain the problem and in my anxiety, I blame him for it and all things bad in the world. He (trying to be patient with me becuase he knows how I get) tells me he will pick Zach up from school and meet me at home. This enrages me - didn't he know that the therapist would be late and that this was my day to run errands on the side of town where Zach's school is?
In the end, there was no choice. I sat there in my unfavored vehicle (a minivan is pretty much my worst nightmare in terms of trying to be cool as well as driving something that often feels like a tank in a slightly smaller profile, not to mention the customized factor of having a hole in the rear bumper, scratches down the left side from our too small for 2 cars garage, and a fender that basically looks like a crunched up soda can.) As I sat there contemplating what further torture awaited me, a little voice in the far back seat says "Who were you talking to and why aren't we moving?" SNAP. I am thankful for one thing, I didn't, in my tirade, curse out the world as I have been recently frequently doing in front of my young, sweet daughter.
As I give the car one more try, it starts as if nothing was ever a problem. The darned vehicle knows I never loved it, and so it taunts me, I tell you, it really taunts me. I call Steve to tell him the car started, but I now have 15 minutes to do a 25 minute drive. He tells me he is already on his way, he'll meet me there and I can go forth with my day.
As I approach Zach's school, I realize what it must be like for Steve to get these panic/irate phone calls in the middle of his professional work day. I am embarrassed by my behavior, but I say nothing. I look for disdain in his eyes, but there is none. He is probably too tired. Or perhaps he understands me now, and that it isn't him, it's our current situation that drives me into hysterics from time to time. Or perhaps, I just always have been a pain in the azz, he accepts me anyhow, and I just realized this, so quit blaming our "situation" for my occasional lunacy.
Off to errands with Sophia and Zach in tow I go. Is it the said science museum, or park? No, we are going to the ramshackle discount vitamin store to go pick up $180 worth of supplements that the doctor has recommended. The place is so dingy, that I allow the kids to touch nothing, and not out of fear that they will brake something, but more so that their tetanus shots didn't take. The place is a warehouse for an internet site, and it is very interesting to see the underpinnings behind the clean and organized website they have. I wonder if amazon.com's warehouse would look as bad. Probably not. Everything I purchase is double sealed, and I check for expiration dates before I leave the parking lot for sure. In fact, one item I purchased was set to expire next month. Being that it is a 90 day supply - off I had to go back in to the hole, and with little explanation, I got my money back. I am embarrassed that I took my kids to such a place. I am sure they thought it quite an adventure. At least that is what I tell myself so as to not feel guilty.
The rest of the afternoon goes well, Sophia was invited to a friend's house to play and Zach stayed awake for his therapy. No naps. Uhh, well, until 4:45 when Zach dozed as I spoke with his therapist about how his session went. Ahh nuts. A nap this late is surely going to wreak havoc on his bedtime routine. I try, in vain, to wake him. No way. I decide a power-nap is permissable, and that is it. Forty-five minutes later I finally could arouse him out of his slumber. Ahh geesh.
I pick up Sophia from her friend's house, we arrive home, and she promptly plops herself down on our couch to which I tell her that no way now how is she going to sleep. She whines and complains, and I tell her that if she wants to go to sleep, she can go up to her bedroom. The smell of me making homemade meatballs keeps her awake as well as a promise for dessert if she eats something healthy. Steve arrives home from work at 7ish, and he is pleasantly surprised by the calmness. Children have finished dinner, and I am finishing my cooking. We decide to forgo the baths since they had one last night, we get the PJs out, and look forward to an evening just chilling watching a Disney flick, all 4 of us together with all the chores done.
Eight o'clock rolls around the phone rings. It's my mother. She's panicked. There are bugs all over her bathroom. She cannot get a hold of my sister who lives with her. I tell her I'll be right over. Those nasty words I was so good at containing earlier in the day come flying out of my mouth. I just wanted one evening with my family in peace! Steve volunteers to go over - I tell him I was so looking forward to being together as a family. We decide the kids are in their pajamas, lets just go over and see what is going on. It's a 10 minute drive, and Sophia was crying earlier that we had left her Snow White movie at Babcia's, so now we can retrieve it.
We arrive, and my sister's car sits in the driveway, glaring at me. Indeed there are some ants in the bathroom. My sister is nonchalant by the fact it is 8:15 at night and I have driven with my two young small children in their pajamas on a school night to spray raid, install some ant traps around the house and wash bathroom rugs for my Mom while she is there herself. I don't ask questions anymore about why my sister can't handle some of these things. I don't ask the obvious like "Why didn't she answer her cell phone when my Mom called?" I just don't get upset about this stuff anymore. I am numb to the fact that our lives and our chaos is taken by my family as part of my delirium. They know if they call, I will respond. It is who I am. I want to support others, help them. I just wish they understood that we are in crisis here ourselves.
In the past two years, Steve has installed a microwave and exhaust fan in my mother's kitchen which involved some custom woodworking over my mother's stove. He has also installed a new dishwasher which involved taking out part of her floor and subfloor to get the new dishwasher in. I have driven my mother cross town, researched, and helped her choose and purchase a new refrigerator. We have purchased and installed a new light fixture in her kitchen. We have installed a new sink faucet - THRICE for her kitchen. Yes thrice, because after the first one was installed, we realized the window latch got caught on the spigot. Then after the second one was installed, my mother was standing on her sink (I kid you not) in order to knock down icicles out the window over the sink, fell on the sink, and bent the spigot. I have troubleshot my mother's furnace and got it started for her after spending a cold night without heat after being called frantically int he morning while trying to get two kids off to school. I have gone shopping with her, purchased, and had to return various window treatments. These are just a few snapshots of the various house projects we have helped her with. I am glad that we did them - she deserves more than what we can offer her. But I am sort feeling like it will never end, and we just don't have it in us to do them anymore. Our life is running at 100 miles an hour, and there are not pit stops. Those few times we have to catch our breath seem to be taken up with helping others. These are the things, in conjunction with doctor and therapy appointments for her, that in conjunction to life with two small children, and AUTISM CRAZINESS have made it impossible for me to contemplate ever having a normal life with a real job that I can excel at.
OK, RANT OVER.
I hear about people whose kids go to bed at 7:30 or 8, and I hate them. OK, not really, but I cannot figure out for the life of me how to accomplish it. I had a friend with a typical kid who told me to just get the kids to drop the nap. Sort of like the Nike slogan of "just do it". Her kids are the same age, and she said, with what felt like near scorn, they don't nap. I told my one therapist this, to which the the therapist remarked that my friend's 3 year old son didn't have days filled with 7 -9 hours of therapy, so you cannot compare. Our therapist, a mother of 4, has seen a lot of families with kids on the spectrum. I was so glad for her support in understanding just how tiring this stuff is - not just for me, or Steve, but those precious kids of ours, too.
Life will likely have naps for a while. They will fade over time. I have to face that our lives are full, and that we all need those moments of rest, even if they aren't convenient. Nothing else in our lives is convenient. Things don't go as planned more often than not. One foot in front of the other.
1 comment:
I remember watching my parents cater to my grandmother much in the same way that you have to cater to your mother (and I don't mean this in a slanderous way). My mother was an only child and there was no one else, so she did *Because*.
For whatever reason, the onus has fallen on the baby of the family (you) and, as frustrating as it is, you are the better person. Your siblings are not stepping up to the plate, and I don't believe that it is as simple as saying that they don't because they know that you will. You do it, regardless of whether they would step up to the plate. The same can't be said for them. Your mother calls on you because you're reliable. Unfortunately, your needs aren't considered in the moment and I think that is very generational. Probably aren't going to change that.
As for the "advice" that people give about naps and bedtimes? Autism or no, every child is different. I have a friend who doesn't put her 7 year old to bed until 11:00 pm. He gets up at 7:30. That wouldn't fly for me, but it works for them.
You won't always be in this place. Take a breath, try to carve out a moment. There's a reason why someone made up the saying, "Life happens while you're busy making other plans." The one thing that autism has taught me is to appreciate the minute things that others simply take for granted. You'll get the family evenings. And, they'll be that much more special when you do get them.
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