What We Need

     “I told you to eat your cookies before eating the rest of that chicken.” I can’t believe I just said that to my kid. I’m not sure those words, in that order, have ever been uttered before. After the words came tumbling out of my mouth, I wondered, “Did I really just say that?” 

     For C, eating a cookie, one that most of us would fine plain, boring, and not nearly sweet enough (translate organic, and minus most of the things that usually go in cookies, like sugar, eggs, butter, and flour), is much harder than the chicken he had for lunch. Giving him a piece of cake would be the equivalent of giving most people a fried rat in eyeball stew. This is life with a sensory-afflicted child who is terrified of food.

     Yet all around are signs of huge success. C went to the dentist today, for the third time this year. The first visit included walking into the office, checking out the chair, and meeting the dentist - one of those cool, kids only dentists who specializes in children who fear the dentist (can I go?). The second visit involved actually getting in the chair, looking at all the tools, opening his mouth for the dentist, and allowing the sainted man to brush his teeth with a regular, dry toothbrush. This visit today included a brief but full cleaning, complete with a very small amount of unflavored cleaning paste. There were freaked out faces made, slight gags, and lots of looks to Mommy for positive reinforcement.

     But he did it. Amazing.

     People have found this blog in various ways. About 50-75 people visit daily, and for the most part, I have no idea who they are. But they leave a trail; a trail that makes me wonder if they are getting what they need from “What We Need.” The website keeps track of the google/yahoo/[insert your search engine here] searches that land someone here at my humble online abode.

     There are comical searches, such as “he’s not giving me what I need in bed,” “does God say touching breasts is wrong?” and “how to present a giraffe to a preschool teacher.” There are ones that make me wonder how in the world they ended up here, such as “we need one car to take him to the city” and ”why babies make spit bubbles.”

     The ones that really get to me, however, clearly come from people who need something from their search. These searches are probably like the desperate ones I used to put in early on with C when we had no idea what was going on with him. “Help, I think my child has autism.” “Is sensory integration disorder considered autism?” “Preschool street signs obsession.” “Hypotonia, sensory integration, failure to thrive.” “How do I get my child the help he needs?”

     I imagine a parent, late at night, exhausted but unable to sleep, perhaps worried about an infant or toddler who was premature but hasn’t caught up like preemies do. They are wondering why their child lines up his trains in perfect order, why their child seems to have constant tummy aches, or why their child opens and closes doors continuously. It seems that some are wondering if the first diagnosis of one thing will really end up being autism after all. It’s a scary time for a parent, because while I don’t think we expect our kids to be perfect, we expect things to be perfect for our kids.

     While raising C has been nothing like what I expected it would be, I wouldn’t change him for anything. He has so many gifts, so many amazing qualities, and so much to offer the world. I can’t say it’s all been easy, not even close. But the benefits far outweigh everything else. So whoever you are, sitting out there, staring at a computer screen and wondering what it all means, I hope you’ve gained some comfort here.

     When C was very little, he was extremely sensitive to noise. I used to take him out for a walk while Husband ran the vacuum. I’d take the mixer into the bathroom and close the door to use it, but C would still scream. The blender was out of the question and I’m pretty sure my hair looked bad most of the year because I tried not to blow dry.

     These days we’re down to fewer things that bother him, although I’m not sure the problem has grown less as much as he’s learned not to show a response. The dog going nuts at the doorbell or the garage door still spins him into sensory overload orbit, the blender sends him skittering to his room, and he prefers to be far away when the mixer is in use.

     It leads me to wonder whether he’s growing up or growing out. Is he dealing with these issues better or are they simply becoming more complex and less obvious? Are the gains in age and skills bringing the issues to new levels also? Is he internalizing more and is the outward response to sensory stimuli hidden away somewhere far more damaging than letting it out with a scream would be? Babies are so obvious about things; they don’t like it and they cry. Seven year olds are far more sophisticated with their emotions. I’ve seen C hide and squelch a sob when his feelings are hurt, so I wonder if he’s doing the same with sensory stimuli. Hiding and coping are not exactly the same thing. On one hand I know this will serve his outward appearance to the world, on the other hand I wonder what it will do to his inside self.

     Today was one of those days…you know the kind - where nothing seems to go right? From the moment I woke up, at 6:15, to the ear-splitting scream (via baby monitor, which apparently sits WAY too close to my ear) of “MOMMY!!!!!!!!!”  to this moment of going to bed, typing hunt and peck style due to the bandaged and very sensitive finger, it has been a rough one.

     After hurling myself out of bed and running across the house expecting giant aliens to be coming through the windows or at least some blood, I entered C’s room and found him sans UFOs or major injury to life or limb. “What?” I asked, not altogether nicely, yet still expecting some unseen disaster to appear before me. “Ummmm, I can’t sleep. Will you snuggle with me?” Now, darn, if this isn’t just adorable, and sometimes might even work, but not today. After a brief, few sentences with choice words about when it’s appropriate to yell at Mommy in the wee hours, I went back to bed. It was short lived, however. Only mere minutes after I fell back to sleep, came the next most pleasant way to be awakened, which is “I NEED A WIPE!” This one is a constant occupational therapist’s nightmare as it’s particularly difficult to teach a body unaware, fine motor skills challenged, can’t place hands on something unseen even if it is part of one’s body, and still doesn’t wash hands very well little person how to wipe his own bottom.

     This was day two of C staying home with a cold. He’s not particularly sick, but if he overdoes it, he will be. So he’s been home hanging out with his humidifier and doing his best to drive me to drink. Today, however, determined to do something productive with him, I decided we’d do a craft together. We searched the Highlights magazine craft pages, and I picked out two crafts that seemed doable and for which we had supplies. Naturally, when presented with the two options, C picked out a third. I reiterated the two choices and he picked yet another one on the page. This went on until he had chosen every single craft on the page except the two I said we could choose from. At that point, I left him in his room.

     Once he decided to participate, I asked him to get four pieces of recycled paper. Predictably, he said he wanted new paper, and I repeated the request for recycled paper. He went and picked out new paper anyway. Then he went back to his room. This went on for quite some time, during which I had the usual argument I have with myself while in the midst of these episodes. I recognize the need for bending to C’s idiosyncrasies, but I also recognize the need to have a child who is capable of completing a task I request. This is a difficult balance, and one which causes great struggle for me. C is so high functioning that at times I wonder if I’m too hard on him and am forgetting the challenges he faces; that recycled paper (with printing already on one side) likely bothers him on a deep sensory level. It sounds silly, but I suspect it’s true - the writing on one side probably distracts him, catches his eye, annoys him. And the constant need to debate, discuss, and argue is probably not only resultant of his feeling crummy, but also an effort to exert some control over his environment. So I feel like Bad Mommy lady, but I know giving in at this point will make all future debates and discussions far more difficult, so I hold my ground.

     When he does come around, we happily sit down to make our cut out butterflies, and my punishment for being Bad Mommy is quick to come. I promptly send the scissor blade right into my index finger, and while the blood is dripping down my arm, I am reminded of this morning’s worry. It has come full circle, and I expect the UFOs to be landing out in the backyard any moment now.

     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))))

     Wake up. Wait for C to wake up before showering because he will scream that he needs a bottom wipe (still working on that….) while right in the middle of shampooing and will have to dash across the house, dripping soap bubbles all along the tile…dog will lick those up but will probably throw them up later, and usually on the carpet which is harder to clean up than the soap bubbles on the tile. Listen to C get up (via baby monitor), turn off his white noise machine and get pull-ups off, undies on. Remind self to do some research on how to night potty train but also remind self there are bigger battles to fight at the moment. Listen to him go into his bathroom and run to his room to attempt to figure out how, when he pees, it gets all over the floor, the back bottom of the toilet, and the wall. Miss out on that one. Must remain one of the great mysteries of the universe.

     Take shower, interrupted by C standing outside shower door, talking, but not talking loud enough so I can hear, and after repeated attempts at understanding what he’s saying, watch him follow dog out into the hall and wonder what he’s going to do to said dog, and hope husband is paying enough attention to save dog should necessity arise.

     Plod into kitchen, ask husband if he gave C reflux medicine (99 times out of 100 the answer is yes, but must ask in case today is that ONE day), start fixing breakfast. Listen to repeated requests for “dip” (favorite breakfast of dipping something, usually gluten free pretzels, into natural peanut butter and organic whole fruit jelly without any apples because C is allergic to apples), and decide to make his day start great and give dip. Listen to newly acquired request to “spread” peanut butter out on the plate “like Daddy does,” and wonder if this is the start of some new sensory based problem rearing its ugly head.

     Start making lunch, which includes tearing up gluten free deli meat chicken (must be chicken because C is allergic to turkey) into perfectly sized small pieces, knowing if it’s not perfect, I will hear about it the whole way home from school and will be reminded of the one day I didn’t do it perfectly for the remainder of the school year. Put assorted other odd finger foods he will eat at school  (which is a shorter list than the foods he will eat at home) into lunch and wonder, if anyone at school wonders why I send the same thing for his lunch every day, and resolve to increase attempts to work on feeding issues in the hopes he will learn an “apple is the same thing at home, school, grandma’s house, the park,” BUT OOPS, he can’t have apples, work on another analogy.

     Finish packing lunch and set out clothes and revel in the fact that after years of work, C is finally able to unbutton own pajamas and can mostly dress himself as long as things are laid out in right direction and he doesn’t have to button, tie, zip, or snap anything. Make mental note to ask school team to work with him on those things in the hopes that someday, between the team at home and the team at school, he will be able to wear something besides elastic-waisted pants. Wonder when elastic pants become sans-a-belt pants and do kids make fun???

     Get water bottle filled and be glad it only took two weeks to figure out the bubbles that come home at the end of the day are NOT in fact from some leftover soap contaminating his water bottle, but rather because he messes with the straw in the bottle, blows water back INTO bottle, making, in effect, spit bubbles. Listen to C remind me again that there’s soap in his bottle (BLAST self for ever suggesting that within his ear shot!), and remind HIM again that the bubbles are from his spitting back into it and please don’t do that.

     Pack up backpack - have him pack himself reminding him of the backpacking rules that come so naturally to most people. Wonder if I ever had to LEARN how to pack a backpack or did I just figure it out inherently??? Teach him (again) to put homework folder in first, followed by lunchbox, sweatshirt and water bottle on the side. 

    Run out door and get into car. Buckle into 5-point carseat and wonder when  C will get enough muscle tone combined with weight where it’s safe to put him in booster seat. Wonder when more kids than just the one boy - who says something EVERY time he’s in our car - will notice that C is still in a “baby” seat. Sing stupid songs, pretend to race, do whatever it takes to get to school happily and distract from inherent distress at going anywhere Mommy is not. Join in lively rendition of favorite song, “She’s a Brick House,” (complete with “womp-bomp-a-loo-wow” sound effects) and renew concerns about the implications of a 7 year old knowing that song. Start singing “She’s a Maniac” (coupled with pretend fast driving) and doctor up the words to talk about Mommy driving like a maniac and wonder when THAT will come back to haunt me and in what way. Ask what special he has today and if he thinks they’ll have rocket math and keep up constant chatter entire way to school while looking in the rear-view mirror watching for tears or signs of distress.

     Get to school, park (because we don’t do the “push-out” lane), and walk onto playground, generally timing it right before bell rings so there won’t be too much time to run around and generate reflux issues before school even starts. Watch C run around for 2 minutes and not connect with anyone and fight urge to snatch him up and run back to car and keep him at home, sheltering him from sure pain of growing up. Watch him keep one anal ear out for horn so he can not only get in line, but cover ears because horn is too loud and resolve to ask if they could substitute something that doesn’t cause all the spectrum kids to go into sensory orbit before they’re even in the building. Know he is so worried about when the horn will blow that even if he had more time, he wouldn’t venture more than 10 feet away from his class gathering spot and feel sad that he’s so worried at an early age. Wish I could worry for him, and realize, oh wait, I already do that, but wish he didn’t do that.

     Wait for bell to ring, receive more kisses and hugs, be thankful that some days he walks off to get in line without even a backward look at me. Be happy that days of crying and begging to go home are mostly over. Wait for class to line up and go inside, standing, waving goodbye, before walking out with handful of other parents who still walk their kids inside the playground. Wonder, as we walk past the teacher/aide who is waiting for us to leave so she can lock the gate, if she thinks we’re nuts or just diligent parents.

Go home, work, clean, write.

Worry that phone will ring and it will be school.