Archive for May, 2008
Musings on Mothers
As Mothers, we all try to do what is best for our children. We nurture them, make choices for them, and do what needs to be done for them. Sometimes this path is clear and easy, other times it’s not. With a special needs child, these issues are magnified, and I for one, find the path confusing and cluttered with wrong turns at times. I struggle to find the balance in providing all the things C needs, and frankly, there are things that slide by the wayside. We make choices every day about what we believe is important for him. Sure, we probably make some wrong choices, things that will make a grown-up C say “Why in the world did my parents do that?”
What bothers me is the interference and advice from judgmental people who are not offering help and support, but rather criticism and condemnation. This goes beyond the well-meaning, forgivable stranger giving unsolicited advice. A friend with an autistic son was at a conference about autism recently, sitting in on a presentation about biomedical interventions. A woman behind her was looking over R’s shoulder while R was taking notes. “You’re not getting what you need, are you?” the woman said conspiratorially. “You should just love your child and stop trying to fix him.”
I know of no other child, “typical” or not, who is more loved just the way he is than R’s son. My heart ached for her as she told me the story, because this is a Mom who cares for her son in every way. It’s hard enough trying to decide what your child needs without interference from someone who knows nothing about your child or your family. Yet R’s resolve was not at all diminished; she will continue on her path of trying to do what she, as the parent, believes is in the best interest of her child. Just like any mother would do.
1 comment May 13, 2008
Let me tell you ’bout the birds and the bees
C is very simple. It’s quite complicated really, but in essence, he is very simple. Everyone is a potential friend, and he rarely holds anything against anyone. Just this morning, he said hi to a little girl in his class (the one who used to call here all the time but doesn’t anymore, see here) as we walked onto the playground. He says hi to her every day. She never says anything back, but instead runs away giggling with her friends. I realized he has been caught up in something he doesn’t yet understand.
This little girl’s actions really bother me. It seems to me to be too young to have this silly kind of interaction. Momma Bear that I am, I went to talk to her in line and asked her how she’s doing, and did she hear C saying hi to her this morning? I knew she’d be blunt in her response, and she said something about not wanting to be C’s girlfriend all the time. My response about just being friends with everyone, boy or girl, I’m pretty sure fell on deaf ears. Or perhaps just 7 year old girl ears.
As I marveled at the sophisticated, albeit annoying, antics of children these days, I started to feel old. Really old. I am pretty sure I was oblivious to all of that until much later. Perhaps it is my memories that are oblivious, but I don’t remember talking about “cooties” until far later than these years. Just like C doesn’t seem to see skin color or weight differences or anything else (he thinks I look like his new gym teacher, who is about 8 inches shorter and has a completely different color hair, but it’s LONG, so there’s his connection), he certainly knows nothing about the complicated world that is boy-girl relationships.
We talked as we walked in about how good friends treat each other, and he said that perhaps this little girl is shy. I smiled, because she is anything but shy, but loved that C was trying to figure out a reason without holding it against her in any way. I’m not sure what will happen down the road, but for the moment he seemed happy to let it all go.
As I walked away from the school, I was reminded of kindergarten last year, in a very different school, in a very different town, where all the girls had to be reminded to put their cell phones away before class started. They talked about their Christmas vacations in Paris and I felt the sharp contrast between their worldliness and C’s, and wondered if he would ever find his place among these children. I guess kids just grow up faster these days.
C’s innocence is part of his charm, and once again I counted my lucky stars to have this child, this boy as my own.
1 comment May 10, 2008
Another few moments in time
Leave house 20 minutes before school is out even though we live 2 minutes away from school to ensure spot in front of pick-up line. Be glad C and what loosely could be called “friend” B have stopped bickering over whose mother comes first which always ends up in tears for C because either B’s mother came first or because B is upset because I came first. Be annoyed that the newest pick-up obsession is that I have to be in first 10 cars in line. Be annoyed at self for giving into this neurosis but know that picking up a crying child is not a good thing and know that this obsession, too, shall pass. Worry about what next obsession will be.
Arrive at school, am car number 7, breathe sigh of relief. Turn car off and listen to radio to try and catch up on day’s news. Be reminded that many, many millions of people have stresses far worse than ours, resolve to be happy, positive, thankful person. Feel blessed. Wait for bell to ring. Watch for C to come out of building and know simply by the way he waves before approaching car will explain tone of his entire day. Be happy when wave is appropriately jubilant and resist opening door from inside as newly found independence in opening door is a good thing as long as fingers don’t get slammed. Encourage him to get in car before starting to tell about his day as there are approximately 10 zillion cars behind us waiting to pick up their kids. Remind him to be careful closing door and silently chuckle remembering the time when door was simply too heavy and he fell right back out of car onto sidewalk. Revel in fact that he’s socially aware enough that he actually felt embarrassment at that incident, and marvel at how quickly I got out of the car and around to the other side to see if he was okay (he was). Wonder if I could ever move that fast again.
Get door closed, pull away, stop once past the pick-up line to buckle into 5-point harness mentioned before. Ask about day, about special, about who sat by at lunch, who played with at recess. Listen to recitation of school announcements, lunch menu, which classes had perfect attendance and wonder if anyone else in the entire school even listens to that stuff half as carefully. Wonder about streaming text TV they have in classroom and be amazed that C ever tears his eyes away from it. Wonder if they’re putting subliminal messages in there somewhere because if anyone would have them sink in it would be C.
Get home, greet dog, wash hands, empty backpack, talk about homework, make snack. Wonder when this will become routine enough that I don’t have to prompt, and figure it will become routine about the time school is out for summer. Have snack, do something fun or have in-house therapy session. Start thinking about dinner, plan dinner, get dinner started for grown-ups, make dinner for C. Preferably (for him) something that can be dipped in ketchup. Search shelves of freezer making sure to get proper GF/CF/egg free for C and be impressed with self that I finally gave each family member their own shelf with special food on it. Wonder how we got so many allergies in one family and remind self Husband doesn’t have any allergies and it’s really just self and C who have 9 zillion allergies between us. Eat dinner, stay at table afterward to do homework. Remind C to write slowly and wonder if am striking appropriate balance between Encouraging Mommy, Nice Mommy and Task Master Mommy. Take bath (complete with epsom salts to draw out toxins, baking soda to draw down stomach acid, and vapor bubbles to draw out sneezes). Get out, slather in lotion made of absolutely nothing because absolutely everything causes rashes, put jammies on, make up silly compound words because THAT IS WHAT WE DO after a bath.
Do bedtime chores, wonder if we’ll ever be able to move box of baby toothpaste closer to toothbrush area (step 4 in the 90 step process necessary to introduce toothpaste, which he has never used), and be thankful he seems to have inherited good teeth. Wonder how he will ever, ever, ever get through a full dentist appointment. Resove to make using toothpaste a summer goal. Remind self to start a list of all these summer goals I keep thinking about and wonder again about being Task Master Mommy.
Read book together, have a few minutes of hang out time, remind Daddy it’s time for lights out. Watch Daddy get cup of ice water, go into C’s room and sing song. Collapse on couch as Daddy finishes song, turns out lights, turns on noise machine, shuts blinds, and exits room, shutting the door to the exact same spot every single night.
Breathe for a few minutes and take bets with Husband as to how many times C will call one of us. Try to be Nice Mommy because C going to sleep unhappy does not make for a restful night for anyone. Try to balance patience (when C calls for us 13th time) with certain knowledge that we are completely and utterly allowing ourselves to be manipulated.
Crash on couch again and laugh at self when I think of how much I thought I’d get done tonight.
3 comments May 8, 2008
You want to take this one, Daddy?
“Mommy, what does `under sunny skies’ mean?” C asked this morning as he was watching the weather channel, his favorite. Knowing his adherence to the literal, I responded that we are under the sky and the sky is sunny; therefore, we are under a sunny sky today. I’m not sure he really understood, and I consider that my malfunction as opposed to his.
I’ve struggled to answer these types of questions for years. For a child whose educational goals continually target his inability to effectively answer “wh” questions, he sure asks a lot of them. Starting with “What is justice?” when he was 4 and reading the words on coins, I have answered these questions to the best of my ability, yet I somehow can’t help but think C is vaguely dissatisfied with my answers. Even worse, when I answer, “They just did it that way” (my version of many mothers’ “Because I said so”), I feel like I’m failing him. I’m really not sure why the back windshield wipers on the subaru outback impreza go one way while the ones on a volvo cross country go the other. I could call and find out, probably, but I’d spend two lifetimes searching for the answers to his constant questions about things that seem to have no particularly obvious answer.
I feel tremendous responsibility to answer these questions for him, probably much like other parents feel having the loaded, dreaded sex discussion with their children. Yet I’m pretty sure when that conversation comes along, it will seem completely anti-climatic (no pun intended) after all this.
2 comments May 7, 2008
What you don’t know
Some dear friends had a baby recently; they struggled to conceive and I can’t think of many people who would be better parents than they will be. Their baby is beautiful and the pictures they send are delightful to see. Yet they awaken in me a longing I didn’t even realize was still there. It’s almost a faint memory now, but I do recall the discussion, more by others than by me, about grieving a “normal” birth process. One not caught up by terror and previously unimaginable pain.
I recognize a longing not only for a normal birth experience, but for a normal experience with one’s baby and child as well. When I look at pictures of our friends’ baby N, I see the difference I didn’t recognize at the time C was an infant. We were already a family with autism, one that made adjustments in daily life revolving around C’s needs and his rather precarious health. Despite the joy in this wonderful little person we had, there were many years of concern, worry and fear while we tried to sort through his seeming myriad of issues, both developmental and health related. Any parents’ lives change when they have children, but there’s something exponentially more challenging about having something you don’t yet understand happening to your child.
I wouldn’t wish our frightful birth experience (and the uncertainty that followed) on anyone, and have often said I don’t really want people to understand because it would mean they have lived through it themselves. I was reminded of how difficult it can be to truly understand another’s experience by a different friend whose lovely baby came along a year or so after C. She called me a few days after coming home from the hospital in desperate, tearful sobs, apologizing profusely for not fully being there for us when C was in the NICU. Her son had spent some time in the NICU, and her fear and uncertainty quickly clarified for her the desperateness of what C’s situation (and therefore ours) had been. I felt terrible that she felt terrible, and while grateful each of us could have some empathy for what the other went through, it made me realize we can never know someone else’s experience lest we walk in their shoes.
1 comment May 5, 2008
What’s all the hugabaloo about?
Everyone has things that bother them on a sensory level. Some people don’t eat cottage cheese because of the texture, don’t like walking barefoot, or don’t like loud, crowded concerts. This is all a piece of the sensory puzzle; kids can be hyper-sensitive or hypo-sensitive to any number of things. C is both hyper and hypo, which makes it challenging to know exactly what will be problematic or uncomfortable for him.
The first time I ever tried to set him down in the grass, up came his feet. He was a baby then, and it was almost comical to watch, because he didn’t even see the grass, he sensed the grass. Bottom went toward ground, feet came flying up. Bottom went back up, feet went back down. He did just about anything to avoid grass or sand. It was years before he would play in the sandbox instead of next to it. We cheered the first time he flailed around in a pile of leaves. He was 6.
C’s hugs have followed a similar progression. The first hugs he ever gave were shoulder hugs. He’d offer his shoulder to someone for a hug. He’d kind of lean in with his shoulder touching the person. There was no arm involvement in these hugs, and his hips and body were usually as far away as possible from the other person. Then he progressed into a head hug, in which he sort of buried his head in someone’s side with no other bodily contact. After that, he started giving real hugs, but mostly on his own terms, when he wanted to do so. But like his language, his hugs are often copies of the one who is hugging him; if I pat his back as I’m hugging him, he’ll pat mine.
The end to the story is, of course, the bear hugs that C now gives some of the time. Both arms, full-on body contact, snuggling completely. He saves those for people he knows and loves. (Everyone else gets the “everyone else” hug, which is a combo head, shoulder, one side of the body hug.) I live for these bear hugs and wish I could bottle them up to give to those who need them. For the longest time, that was what I (selfishly) found so troubling about the way C related to us; I wanted hugs, real, meaningful HUGS. And now I’ve got them to share. ((((HUGS))))
4 comments May 2, 2008
