Archive for September, 2008
During C’s K year, we had a terrible year and had to pull C out of one school mid-year and start another. All of us were sick constantly, and C was the worst. Too much free time spent in the bathroom at school landed him with monthly bouts of diarrhea and one trip to the ER after a night of vomiting every 10-15 minutes for 8 hours straight. It was an awful year, and it couldn’t end soon enough.
Part way through the year, I sought counsel from a therapist who didn’t do the usual, “And how does that make you feel?” Instead, it was more of a dialogue between us, with Barbe showing her understanding by saying, “Well of course you are depressed, who wouldn’t be?” I needed a break, I needed to focus on myself for awhile, and frankly, I needed some help. She proved the answer to all three of those things.
One thing Barbe asked me to do was make a list of how I could get out of my current situation. What could I do to make it better? As I listened to her describe the exercise, my mind was swimming with possibilities. The list would be pages long, I thought. However, when I sat down to write it out, I only came up with three. The first, completely unreasonable, was “Write and publish a book, make a zillion dollars and hire a nanny.” It was completely unreasonable to me because I couldn’t imagine anyone else picking up C from school. How could I justify giving away precious hours in the day to someone else? I’m his Mom, and he needs me. And I need him.
The second, which we’ve done, was “move back to family.” Back near willing and able grandparents has proven key in our escaping occasionally for brief respites. Ga and Pa take C to therapy appointments sometimes, and have him spend the night every once in awhile. It’s never enough (could they just move in???), and they do have busy lives of their own, but every little bit helps.
The third and most powerful idea has been the one that dances through my mind continuously. I have been on various paths through accepting what is while not giving up on helping C be the best and happiest C he can be. I’ve never thought accepting meant giving in or giving up, but I’ve come to a better peace and understanding about what is since writing the answers to that question. The last answer to the question of how to get out of my situation? “Get okay with being in.”
Our brief foray into the world of Boy Scouts is over. It was quick and somewhat painless (at least for C, not so much for me). It all started at our last IEP meeting, where a discussion about how to help C make some connections with other boys somehow evolved into my becoming a Cub Scout Den Leader. It happened almost before I knew it, so skilled are those folks who participated in our IEP. Frankly, it was a good idea, in theory. The reality, however, was different (and thank you, Husband, for somehow managing not to say “I told you so”).
As is sometimes my way, I jumped in with both feet and almost immediately wanted to run screaming into the woods. Never mind the woods are where Cub Scouts are supposed to be. I thought I had enough information to make a wise decision, but I was wrong, wrong, wrong. I signed up, thinking it would be good that I could control the den and our activities. C needs to work on gross motor skills? An “outing” (the Cub Scout word for “field trip”) to the climbing wall. C wants to learn about stars? Planetarium, here we come! What I failed to take into account, however, was the likely difficulty of my being leader and C’s parent at the same time. In the past, this hasn’t been a good combination. And as I read through the overwhelming “to do” list for leaders (graciously provided after I accepted the job), I quickly realized there was no way I could do it all and still help C have a positive experience as a Scout. So after a few days of agonizing about it, I told the pack leader I just couldn’t do it. “But I’ll be a leader’s assistant!” I graciously offered, thinking this would solve my problem of needing to be in attendance with C at meetings but not wanting to actually run the meetings. So the poor man found another leader, and I merrily went on my way preparing to be an assistant.
Then the email came. The email that ended it all. It was a schedule for the boys’ first campout coming up next month. Included was a list about 12 pages long of the exact activities in which we would participate that would ensure the maximum number of badges would be earned in the course of the weekend. Wait a minute, did that say weekend? Given we’ve never even managed a camp out for one night in our own backyard, it’s hard to imagine going an entire weekend in a tent with, well, C. One of the first activities was for the Scout to plan and prepare a family meal over the campfire. C doesn’t eat meals. C eats finger foods. And certainly not finger foods cooked over a campfire. Can we eat Fruity Booty right out of the bag? Does that count?
After that email, I continued to fight with myself about why Scouting would be good for C. He loves all that positive reinforcement; badges and pins would be a thrill for him. It’s organized, structured and busy. Yet for the first time ever, we may have found the activity that’s too organized, structured and busy for C. The thought of an entire weekend camping out (which I think we would all ultimately enjoy after some practice) with an entire Pack of distractions and frustrations for C, made me want to run screaming into the woods again.
So with a heavy heart, I resigned again from Cub Scouts, and not only for myself, but for C. Given he hasn’t even mentioned it since the first and last Pack meeting we went to, I don’t think he cares. We’ll have to run our own camping trips to the county park near us. Just not on the same weekend the Cub Scouts are there.
She watches mothers, constantly, and is fascinated by their sheer volume. She wonders if she will ever take up that much space again? She feels smaller than she used to, less a presence in the outside world, but more a presence in her own home. She feels dependent; on schedules, routines, the refrigerator, her child’s mood. She feels depended on for sheer life. She wonders what would happen if she were no longer here, and she worries about it. She knows kids can survive without mothers, but what about these kids? What about her kid? She wants to download all the information about her child from her brain to something else – just in case.
She watches mothers, on the playground, at the grocery store, and at school, wondering if they are even aware of mothers like her. What must their lives be like? She pictures their households, and pictures an easy life. Not easy as in simple, but easy as in normal. Are those mothers blissfully unaware of mothers like her? She reminds herself not to judge her insides by someone else’s outsides (she read that somewhere), but she can’t help but wonder what that normalcy must be like. Not normal in terms of her child being not normal, but normal in terms of just being a typical, average family. She gets lost sometimes in the added layers of complication of their lives; the trying to find the after-school activity that promises the largest chance of success for her child, the hope of her child finding a playmate that might become a real friend.
She watches mothers, and she reminds herself she wouldn’t change one thing about her child (he is perfect) save the chance to make things easier for him. It’s not that she doesn’t want him to learn the tough lessons, but rather that she wishes he didn’t have to learn so many of them. Where’s the equity? Why do these kids, already challenged, have to be challenged so much more? That’s what makes her cry.
She watches mothers, with a feeling she can’t quite describe building in her heart. It’s not envy, judgment, anger, self-pity or sadness. It’s distance. She feels on the fringe. She feels like her son.
As I stood waiting for C’s class to go inside this morning, he was lagging at the end of the line talking to a little girl in his class. He told her that he had a new $10 bill at home and that it said “We the people” on it. The class recently memorized the Preamble to the Constitution, and for those of you who don’t remember (um, that would’ve been ME before it was repetitively drilled into my head a few short weeks ago), “We the people” comprises the first three words of the Preamble.
This lovely little girl, whom I would gratefully adopt if only her parents were willing, looked at C directly and said, “Wow! That’s really cool!” They continued chatting all the way in the door. It was such a delightful moment for me to witness. C sharing one of his slightly perseverative fixations with someone, and that someone responding in an interested way. A real, meaningful dialogue between two kids, and one of them was C.
I think he might have a real friend.
“I played basketball for the first time today. Now I can play for a real team on TV!”
From writing work at school…If I ever get married…“I will have triplets and will marrie S.” (S would be the adorable girl that sits next to C.)
More from writing work…People love me because… “I like to snuggle with my family. Also I am so so so so so cute.”
At home I am… “helping out with so so so so so many chores. Like folding the laundry, open blinds, bring out water. All these chores make me get so much allounce.”
“Do you know what’s on the back of the two dollar bill? Two guys sitting on chairs, I think.”
“Peanuts have two ingredients: peas and nuts.”
“There was a big bang at school today. Did you hear it??? My potato chips exploded. The bag kaboomed all over the place.”
I am a proud, but also sad, Mommy. C did not get elected to student council. The whole school was sitting in the gymnasium for the assembly, and he was in the back row. As his teacher began to announce the names, I prepared our escape route. I was ready to grab him and run if he completely lost it. But my boy surprised me. He was very upset and disappointed, and he did cry. But he did not make a scene. No outburst, no freak out, no meltdown. He cried for about five minutes and then happily participated in the rest of the assembly activities.
I’m sad, however, because this was an enormous opportunity for him. An opportunity to get something he can not get from me, his teacher or any therapist. Validation from his peers is something he can get nowhere else, and he probably needs it more than most. As I sat there, watching him cry, I fought back tears myself, not because he didn’t get elected to student council, but because of what being elected would’ve meant to him on a grand scale.
Since C was born, he has been on my mind, one way or another, almost 24/7. I am constantly thinking about how to get him to eat new things, how to work out the latest behavior challenge, or investigating what programs/sports/therapies will be the best for him. I can’t just sign him up for a class at the Boys and Girls Club; I need to find out what size the class is, who is teaching it, and if it’s in the loud (and intolerable) gym. Do I sign him up for gymnastics class, a substitute for physical therapy, at the local place that’s not very good in terms of gross motor work but has kids from his school? Or do we go to the place in town that has a one-on-one teacher for him, but no kids from his school?
While he’s at school, I can often be found figuring out the latest EOBs from the insurance company to make sure things were billed correctly and then working them into our flex plan for reimbursement. Or I’m running around to one of 3 grocery stores I visit on a regular basis to accommodate his (and my) dietary restrictions. Or I’m calling around to see if we’ve moved up on the wait list for music or physical therapy.
Yet today, as I was working my paid job, I realized several hours had gone by without my thinking about C in some form or another. Several hours. I’m frankly not sure that’s ever happened before, except when Husband and I are on a trip by ourselves somewhere and C is happily ensconsed at “Grandma Camp.” I sat here at my desk, quite stunned, actually, while I pondered the magnitude of the moment. I took it as a sign, both that C is growing, and that I am slowly becoming able to cross the line back into my own life, my own thoughts, my own interests. It felt like the proverbial light at the end of the tunnel. “Ahhh,” I thought, “here I am.”
There’s my boy, giving his student council “vote for me” speech (results tomorrow – EEEK!). Never mind the safety pin on the shirt, the splint on the thumb, the shorts and tennis shoes – isn’t this the face of the future? C for President 2036!
C had a rough start yesterday morning, and on those days I try to go in and have lunch with him. Truthfully, I probably get more out of it than he does. I feel like the Pied Piper as the kids follow me around, each clamoring to sit with C and his Mom at lunch. They pepper me with questions about C. “What kind of pajamas does C wear?” “Does he have his own room?” “Does he have brothers and sisters?” I try to get them to direct their questions at C, but he is sometimes so overwhelmed by lunch itself that he is staring off in a daze. Even if he could answer all the questions, they come with such speed I can barely keep up myself. “Mrs. P!” “Mrs. P!” “C’s Mom!” They are tapping me on the shoulder and doing their best to get my undivided attention.
You’d think these kids had no parents, no one in their lives. They seem starved for adult focus and attention, which I know is not the case. I suppose just the novelty of a new person around for lunch is pretty exciting to them. I can’t even quite figure out why having a parent around is still socially acceptable. When C had days last year where he would bring home a mostly full lunchbox, I threatened to come in and sit with him at lunch so that he would eat. “Cool,” he said. Oops.
I guess in 2nd grade, parents are still sort of interesting, and I want to do my best to be the cool Mom in the hopes that some of their curiosity and fondness will be turned in C’s direction. For one brief moment, it’s all about C, they all love him, and he is the coolest kid in class.
When C was 18 months old and still not walking, I remember people actually saying to me, “Be thankful! You don’t have to chase him around.” That irritated me to no end, but in such a weird way they were right. A new kind of tired came along to replace the “tired with baby” phase. Then came the “must follow the child around” phase. That was replaced by another, and another and another.
I am happy to be beyond some phases. I remember the one where C was too easily overstimulated to go into a store of any kind. We were living in a weird little town that happened to have a huge and wonderful grocery store. C was just shy of 3, and I decided the time had come to figure out how to get this child in a public place. “He just needs exposure,” my Mom, the power-shopper, said. “He can’t handle malls because he doesn’t go to them!” Ah, so clueless were we before the word “autism” entered our lives.
Off I went, not to the mall, because we didn’t have one, but to Fred Meyer, the equivalent of Target with groceries. The store was only a few moments away by car, which turned out to be rather fortunate. We made it to the outside line of carts. Complete and utter freak-out. We went home. An hour later, we went back. We made it to the carts. I lifted C up to put him in the cart. His feet touched the cart. Complete and utter freak-out. We went home. This went on and on, getting a bit further each time. I finally gave up for the day when we had the success of C’s actually being in the cart, just inside the front door. The whoosh of the automatic doors opening behind us triggered yet another melt-down, so home we went for the final time.
The next day, I was at it again. We made it inside the doors, muzak playing on the speakers, random announcements being made, lots of things to look at and overwhelm. Eventually, after many trips back and forth between home and store over many days, C grew to tolerate it because of the numbered aisles and the lit exit signs everywhere. The problem then became that we had to go down each and every aisle, in order, every time. We could never just run in for just one thing.
Yet I was determined. Determined to teach C he could handle something he didn’t like, with gentle prodding and support from me. I simply refused to allow him to completely close himself off to something so basic for the way we live. There are still some things we don’t push; we know restaurants will never be a happy place for him, so we just don’t go. There are some “normal” things that will never be normal for him, and we accept that.
I am so glad to be beyond that particular challenge. There certainly are new challenges that come along to replace the old ones, but as I look back I’m glad the old ones are gone. It represents not only progress, but the reality that I’ll never allow myself to admit that I’m not up for this challenge while it’s happening, whatever it may be. No doubt it will be difficult as we go through it (contrariness is the latest), and there will be moments of utter despair, but it will be clearer in hindsight because only then will I allow myself to admit, ”Whew, I wasn’t sure we were going to get through that one.”
Never during. Only after.