Posts tagged ‘challenges’

In the Weeds

It has been so long since I’ve done this I don’t even know if I know how to do it anymore. Many, many years have passed, and the more things have changed, the more they’ve stayed the same. This journey, while less about C and more about me now, revolves around C – still.

With massive health challenges, painful behavioral challenges, moves, new schools, a whole lot of therapy for everyone, and alternate living situations, we have all grown up, myself included. The sheer volume of events since last I visited here would fill a book. And after spending a 5-hour chunk of time last week reading every single last word of What We Need, I came away with one conclusion: I need to keep writing. I need it for me. I need to record our journey. I need to document this life we share. If that doesn’t answer that question I’m always asking – just what it is we need – I don’t know what does.

So once again, I welcome you here. If you go way, way back, you’ll see and read about C at 8, 9, 10 years old. He’s halfway through 17 now. He’s been hospitalized more times than I can count, both for physical and mental health reasons. The police have been called numerous times. Cancer has visited our house. Relatives have died. In short, life has happened. Life has gone on, albeit somewhat painfully. Still, there is light at the end of our tunnel, I know there is. I hope you will join me in my search for it.


October 10, 2018 at 12:08 am 7 comments

Happy sad

    C started at his new school late last week. Between three days off for a snowstorm, a half day for teacher workday tomorrow, and a holiday on Monday, it feels like he’s hardly begun. There are many differences in his new school: the kids all seem genuinely kind, they pray in class (“I prayed that God could take a day off work and come down and visit us in school,” he told me), and lunch is a calm, relatively quiet experience. Still, he’s asked me to come every day and sit with him at lunch. Eating in a new place is like eating each food as a completely new food, so he always struggles when starting a new school.

   I went to lunch again today knowing it will likely be a few more weeks before he’s ready to cut the cord. C anxiously sat down to eat his rice and beans out of a thermos (also new). He didn’t want to eat, and I had to push him a little bit to get him started. After a few minutes, I got up and went to speak with his teacher in order to give him some independence. I came back and sat down, at which point C reached across the table, patted me on the shoulder, and said quietly, “Mom, you can go now.”

     I so often cry when C does things, and I often cry in both happiness and sadness at the same time. It’s a strange thing, really; it perplexes me a great deal to feel such opposite emotions simultaneously. I walked out of the school, my eyes filling with tears at the great leap in his comfort level as well as at the fact that he needs less from me every day. This, I suppose, is what all parents feel as their kids grow up – I doubt many other parents feel both joy and sadness when their kid finally pushes them out the door of school in 4th grade, but it’s all relative. It’s happy-sad, but ultimately more happy than sad.

January 13, 2011 at 12:11 pm 8 comments

So far, so good.

     The new school, that is. We like. It seems we have found a place, and a teacher, who fit C. He’s had great teachers all along, and they’ve all adored him (and he them), but this one goes above and beyond special. I don’t know what it is, exactly – but she seems to have found a way to encourage C’s quirkiness while at the same time pushing his boundaries. From appreciating his “stream of facts” book report to offering him the chance to count the money at the school economics fair, this teacher has got him pegged.

     The class size alone (18 as opposed to 33 in his old school) makes much of what is in C’s IEP almost unnecessary, as his teacher is more able to address some of the issues he faces in the classroom. Her gentle approach to reading and her willingness to forge him ahead in math make him feel both relaxed and challenged at the same time.

      At least that’s what I think he feels. Perhaps I’m projecting, but the seeming absolute lack of stress about school are my clues.

     No more stomachaches, no more clinging to my leg in the morning, no more fear about walking into the building. There are still challenges: C still isn’t really bonding with anyone and has managed to find one kid who seems to go out of his way to bother him. After all, autism still lives here. But C is safe, he is nurtured, and he is appreciated, and with those things, much is possible.

September 14, 2010 at 2:48 pm 10 comments

Not enough cooks in the kitchen

     Sometimes not recognizing milestones for what they are until I’m right in the middle of them, I recently realized that I’ve been thinking we’re “halfway there.” Halfway to adulthood. I usually try not to think too far ahead, and my first instinct is to think C will go on in life and do what I’ve always thought my kid would do: go to college, get a job, get married, have a family. From day one, I’ve always gone with the idea that C will be fine, just fine. And he will be.

     Although what I’ve always thought of as “fine,” might not actually apply here. I realize I need to redefine my sub-conscious expectations. It’s really not that I think C won’t be fine if he doesn’t do each thing on my list. My ultimate goal for C is that he is happy and healthy – and truly, whatever that means for him is fine with me. He can be a plumber or a doctor or a train engineer. He can marry a woman, be gay or be single. He can have no kids, 20 kids, or a cat. I really don’t care as long as he is happy.

     Yet lately, I’ve been concerned about all sorts of upcoming things. Somehow, being nine (and being halfway to 18), is halfway to the point where he needs to be prepared for his life as an adult. It hit me like a ton of bricks yesterday as I was thinking about him driving, living by himself, or just preparing a meal.

     Oh, I know, he has years to go before he reaches that point. And any of you out there reading this who know him in real life are likely shaking your heads, thinking I’m being pessimistic. I’m not. I know C is capable of much. But when presented with the very real challenge of C managing to prepare himself a meal, well, it’s just hard to imagine. He’s terrified of the stove, of plugging things in, turning appliances on, knives, touching foods, mixing things together, hot water coming out of the faucet – the list goes on. How, I thought to myself yesterday as I realized this, did he get to be nine years old and he’s never really helped me in the kitchen? 

     I’ll tell you how he got there. For awhile, we were just working on getting him in the kitchen. Teaching C to cook wasn’t exactly on my radar screen; had I actually thought about it, it would likely have seemed simpler to graduate him from Harvard at age six. I remember when an acquaintance, upon inviting us over for dinner only a couple of years ago, asked if we were working on table manners with C yet. Table manners? Seriously? At that point, just getting him sitting at the table with other people eating was huge. I didn’t really care if he wasn’t using a fork. 

     Table manners still aren’t high on my list of priorities, because frankly, there just isn’t time. When things need to be broken down into many, many steps with much space between them, big things happen in geologic rather than regular time. But we don’t have eons, we merely have years. No pressure.

July 2, 2010 at 6:50 am 11 comments

I have no idea what I’m doing

     I have always said I have a PhD. in the study of C, although I think it’s completely obsolete with each new day. When he was a baby, I would sit up late at night typing in keywords from neurology reports hoping to come across the magical answer to whatever seemed to be ailing him. Once we realized there was more going on than prematurity, I started reading. A lot. I had heard of every single genetic disorder, syndrome and issue, and I could rattle off the symptoms of many. None of them fit my C. Even the high functioning autism diagnosis we finally landed on doesn’t really fit C perfectly, but it fits better than anything else anyone has thrown on the table.

     Yet even with all that knowledge, I still feel ill-prepared to shepherd this amazing little creature through life. As soon as I seem to master one challenge, another comes along, and I’m stumped. Be it behavior or gross motor problems or apparent attention deficits, I feel powerless to figure out how to get through it in the most successful way possible. I’m always one step behind him.

     Some things I have down pat. But throw in a completely new issue, and I’m back to square one. I’m reading, questioning, discussing, asking advice and analyzing until my brain is full. And feeling frustrated that if and until I figure out how to deal with this problem number 4 zillion and 96, my child has to pay the price for my complete lack of experience. Where is the fairness in that?

     I should probably ask myself when I will stop expecting to have all the answers. When will I realize that raising this child is like taking a new test in algebra or physics in a different language every single day? Yet somehow, not realizing I’m doing that every single day is probably the most self-preserving denial there is. I think my brain thinks that every new challenge might be the last one, so when one more come along it’s not nearly as overwhelming as expecting them to come along all the time.

January 8, 2009 at 8:22 pm 9 comments

Wake up call

     For whatever reason, I am usually the one getting up with C in the middle of the night if he needs something. “How did you sleep last night?” Husband will say, usually followed by my tired litany of how many times I got up for C, followed by my by then awake enough to be astounded. “You mean you didn’t hear him screaming over the monitor???” I’ll say, incredulously. Truth be told, Husband is great about doing the early morning “I NEED A WIPE!” hollers that we get a few mornings a week (that’s another post altogether). Frankly, I envy Husband’s ability to sleep through a hurricane, tornado, hail storm, ambulance in the front room, coyotes outside our bedroom window, or the sounds of the high school band wafting up to our neighborhood on football nights.

     But every once in awhile, C will specifically call out for Daddy. Husband must be in tune to his own name, because when C called “Daddy!” one  wee hour of the morning this weekend, followed by a more frantic, “DADDDYYYY!!!!!!” he managed to stumble out of bed. I blissfully rolled over, grateful that whatever was going on, it was clearly a Daddy issue. Those usually involve needing bandaids in the middle of the night for an owie, either real or imagined (Daddy is a much better bandaid administer-er, a talent I have acknowledged over and over to C in the hopes that some of those middle of the night owies will fall to Husband instead). Yet apparently there is a new skill C feels Daddy possesses: Bug wrangler.


December 14, 2008 at 10:19 pm 9 comments

The tide comes in, the tide goes out

     A scourge has hit our household; one with the destructive force unparalleled except perhaps by locusts or tornadoes, although I see the similarities, quite frankly. “Defiance” with a capital “D” has landed in our roost. I’m not sure exactly when it started, yet I suspect if I really sat down to analyze it I would see the precursors many years ago. At first I thought it was perhaps a delayed developmental stage, but this two year old “NO” kind of thing is way past its time, delayed or not.

     Usually no one but Husband and I witness C’s most deplorable behaviors, so I admit to sometimes needing a reality check about how bad (or not bad) they truly are. People (translation: my Mom) tend to be skeptical about the extent of problematic behavior we experience at home, mostly because he rarely exhibits it elsewhere or in front of anyone but us. Enter a road trip, complete with Ga (aforementioned “Mom”), C and I last week during fall break. San Diego called, and we wanted C to see the ocean for his first time. The trip was great; Legoland, Sea World, and the beach all competed for the most fun day, and C did really well handling it all. It wasn’t until the last night, probably completely worn out from the week, that C pulled his worst behavior out of his hat. My Mom was stunned. It prompted a long conversation after C fell asleep about what’s been going on at our house. C repeated the behavior the next morning. A screamed “NO, I WILL NOT DO THAT!!!! AAAAAHHCCKKK! I WILL NEVER DO ANYTHING YOU ASK ME TO AGAIN!!!” complete with other gobble-dy gook I’d rather forget left Mom speechless. 

     We piled in the car and came home, leaving Husband and I to do a behavior boot camp this weekend. Lots of long faces from us and talks about being respectful, a few toys lost, some favorite shows erased, and the jury is still out as to whether we’ve made any progress. Like other problematic behaviors we’ve experienced in the past, this one will hopefully go out like the tide. I’m just worried about what comes in after.

October 26, 2008 at 7:37 pm 6 comments

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