myverywildchild

The chaos and mania of parenting a child on the spectrum


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Yes, our Daughter Locked out the Principal

 “I say, Job well done,” my girlfriend texted me. It was just what I needed to cope with what had just happened.  Our eight year old was not only sent to detention, but gleefully locked the principal out of her own office.

After I got over the initial shock and distress, I realized that this was exactly what I felt like doing to the principal. Locking her out of her job, more accurately. I think my first grader may just be smarter than every talking head in the district. After three years of denying her appropriate services, maybe the solution was pretty simple. My daughter showed the principal the door.

My daughters’ emotional and aggressive outbursts had reached an alarming peak at this point, occurring multiple times a day. I heard, secondhand, that one day several teachers had to barricade her in the hallway inside of a wall of chairs and desks.   It is interesting that I never received a call about that incident. I probably should have marched down to the school upon hearing and demanded answers, but how could I when my daughter was hurting people? I knew it had to stop. I was devastated. Yet, I had been begging them to provide different supports, I had been suggesting that she belonged in autism support somewhere else, as painful as that was for me to even have to acknowledge to myself. Now, after all that, they wanted to know why she was becoming aggressive. “Was something different at home?” Huh?

It was like talking to a wall. It was like I had been screaming and shouting and no one was listening.

And I’m sure that is exactly how my daughter felt.

Her last outburst was over an art substitute. She was terrified at the prospect of entering the art room with a new teacher. She freaked. She scratched and clawed at the assistant. We had already been told that they finally agreed with me that she needed a new environment. She needed to leave. She needed to be taken to another school. Now that it was April. First they were going to give her a last chance to redeem herself. They were revamping her behavior chart with stickers instead of smiley faces. Or smiley faces instead of stickers. I’m not sure I was paying attention.

Maybe I should have been relieved, but I couldn’t’ believe that they were going to kick her out of school in April. I was devastated. I was crying myself to sleep. I was actually praying to God to help her so that she didn’t have to leave the only school she had ever known. And the only little “friends” she had ever had, despite the fact that she was alienating them every day. I wasn’t rational. I hated the way they were handling her at school. I didn’t feel that any of the supports were working, or that there were enough of them. Still, I felt by them taking her out of her school, she was being punished. It felt like a betrayal and an abuse of power, that after all my suggestions, they were now calling the shots. I hated them for doing this to her, for doing this to our family. Every time I thought of one of the little girls in her class, carrying on with birthday parties, and the end of the year field trip, and the class party, and the exclusive little brownie troop, a new fresh pain lacerated my heart.

They were giving her a week to shape up or ship out.

We had to sign the contract agreeing to the new three strikes and she’s out policy. Nothing else would change in her accommodations other than the twenty-something behavioralist and her twenty something special education teacher collaborating over inane sticker charts.

School Spirit day was approaching and it was suggested that I “consider” keeping her home for the day, as it might be overwhelming for her. The principal called me at home and explained that she, the guidance counselor, and the special education would all be in dress rehearsal for the “big show,” and since her “support staff,” (a stay at home mom with no education or special needs background) was only part time, our daughter would be left to process the noise and unstructured crowd on her own. “I’ll leave it up to you,” the principal told me.

I felt like I was being backed into a corner. It was like the school mafia was threatening me, using their bake sales and school spirit days as cover. My daughter and I headed to the mall for the day instead. Of course, it wasn’t a good day. I was sad, and stressed, and straddled between sympathy and resentment me for my daughter. “Why can’t you just be normal? Why can’t you just stop?” I kept begging her in my mind.

Of course, because she can’t process time and steps normally, and she has immense anxiety and ocd like behaviors, she sometimes moves through activities like a machine, not actually stopping to enjoy or experience them, but moving through them like a checklist to “get” to the next thing. It was not a day of leisure, shopping and chatting with my little girl. For those with no experience with autism like behaviors, it is similar to that stereotypical “Rain-man,” character, with her continually asking what is coming next. “Wait, did we have lunch?” she might say, if we had a snack on the go, instead of a full sit down. It is irrelevant whether she is hungry. It is the fact that we skipped a step. It will cause her major distress.

I told her we would shop and maybe get her a little something. When I detoured through the department store and stopped to look at a shirt for myself, she became belligerent and angry, rearing her head and shouting that she couldn’t wait, couldn’t wait, couldn’t wait to get to the Disney store.

I felt torn between wanting to protect her for all she was going through and angry at her behaviors. Maybe the school was justified, and I had just created a spoiled, monstrous brat that threw tantrums every time something didn’t go her way. My anger and frustration boiled up at her, feeling guilty that it was my own anger and lack of patience that caused her reactions. It was my fault. I am just a bad mother, I thought. I wondered whether it was my own cycling between anger and over-indulgence that was the problem, and now she was a monster. A monster who was being kicked out of the first grade.

It didn’t matter that her twin brother had not a single one of these issues. Nor did her older brother. Though he tended to be shy and sensitive, no doubt due to the added stress at home.

While she caused a spectacle in the store I took her arm with a firm grip and told her she was going to behave. And she turned and told me she was going to “Cut me head off.”

It was a gut punch. For all her tantrums, screaming, and aggressive behaviors, I always felt it happened mostly under duress. Most children with special needs develop “behaviors” and many try and control with them, which only makes sense when there is so much that they can’t control.

But this was horrifying. She seemed so matter of fact, I was terrified that she didn’t seem to flinch or react. I was afraid I had birthed a sociopath. I was in such shock, we just left the store and I gave up. She had me in tears, and I was holding her little shoulders demanding she apologize for saying something so awful. She broke down crying and kept apologizing over and over. I knew they were right. I knew we needed more help. I hated them for making me fight for it. I hated that they had me in the vulnerable position. I felt the world had been turned upside down. Hadn’t I been her advocate for all this time, and now they had me feeling like a detached, clueless parent. A bad parent. And maybe I was.

I sent her back the next day, after “School Spirit” was over, and just waited for the phone call. Of course it came early that she had been sent to the office. My husband, who fortunately works from home, was available and agreed to come. I sat in the passengers’ seat, slumped down to the floorboards crying. The principal came out to greet my husband and left our daughter alone in her office. Bad move. When they turned the corner, my daughter closed the door and locked it.

“We’re locked out,” the Principal said to my husband. “You see. This is what we go through. She has locked us out.” We sheepishly took her home. Actually, we took her for lunch. I watched her eat her grilled cheese, her eyes still wet, and her cheeks red and stained with streaks from where she had been crying. Now her body looked relaxed and calm and soft, sitting with us in the restaurant booth. All I wanted to do was hold her. “So you locked Mrs. X our of her office, huh?”

“She’s mean,” was all my daughter said. Indeed.

The next day I was called in for a private meeting. I knew we had lost the battle. She was out. Mind you, we had already been pushing for our daughter to be sent to another school for autistic supports, but without a clear diagnosis, she was categorized as a special education student and did not qualify. In fact, several of my distraught phone calls to the head of autistic support went outright ignored because our daughter wasn’t labeled correctly.

It didn’t matter that she had been having emotional outbursts on a regular basis. It didn’t matter that she was alienating herself from her peers. Nor did it really matter that she was below basic in every subject in school, and unable to complete much of her work, particularly math, because of her many emotional breakdowns. Most of these occurred over “spectrum-like” issues: changes in routine, transitioning from one room to another (which she had to do at least five times a day for special services), not including the changes for gym, lunch, and recess. She also broke down emotionally over anything that required fine motor activities (simply writing her name was difficult for her) and she showed clear signs of dyslexia which the school would not diagnose. She could not process games in gym because of her poor motor planning, and her poor coordination, balance, and gross motor skills kept her from fully participating even when she could grasp the games. This happened not just in gym and recess, but any activity that required her to manage both sides of her brain, in short, anything.

The principal informed me that she feared we had a much, much more serious situation here. “I’m seeing behaviors here,” she told me, from behind her large mahogany desk. “Not disability.”

Behaviors, not disability.

In the eight years of parenting never before had someone said something so hurtful. So ignorant.

When I had to tell my daughter that she would be changing schools, she cried painfully. She didn’t want to leave her friends. She didn’t want to leave her brothers. She said that everyone hated her and she wanted to be someone else. She said she wanted to be dead.

My seven year old wanted to be dead, and the principle thinks she doesn’t believe she has a disability.

She has been in autistic support for over a year now, and she also started taking a low level dose of anti-anxiety medication. She still has her triggers, but she is doing wonderfully better. They have not locked her in between desks. Instead she has a small classroom, and an area with bean bags, and pillows for when she is under duress. She has trained teachers who now how to safely, calm and hold her. Incidentally, her incidents are going away.

Sometimes she asks me what was wrong with her old school? What is wrong with her old principal?

I tell her that they just didn’t have the right supports for her.

“You know what, mom?” she says, “I think that they need to go back to school.”

Yes, I think that is a very good idea.

 

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Invisible Disability

imagesITL6FHGQThose of us with children on the spectrum, or with other neurological disabilities, or hearing or vision loss, any disability that does not present in a physicality, have likely been introduced to the term invisible disability. It is a shame that we are the only ones that learn it. The term may bring validation to those of us who experience the ignorance and lack of compassion that people have for our children’s struggles, but it isn’t one of those terms that has yet to be widely embraced despite autism awareness entering the realm of political correctness.  Sadly, the notion remains invisible.  At least from my vantage point.images51QM1IOT

Maybe it is a self-perpetuating problem because many of these disabilities are so misunderstood by the medical community. Even by us parents. It is a slippery slope. If people can have “invisible” disabilities, than how can we really define them? How do we identify them? Who can we blame? And how the hell can I stay away from them then? I think it is a frightening concept for most people. No one really wants to think about the possibility of a “crazy” person living amongst them. It is the kind of dirty secret that we have to conceal into the recesses of our minds in order to keep our sanctity of mind. It is strange that people discount what they cannot concretely see right in front of them, when they know full well that what goes on inside their own homes, and their own minds, is not accurately raw and on display. Nor would they want them to be. And maybe that is the point.

Maybe it is the invisible, intangible, deficits that people fear the most. So many of these neurological disorders of the brain are present in deluded form in each of us. How many of us obsess over tedious details, like the way our clothes or folded or whether the toothpaste tube is put back on, or how many of us are phobic about the flu shot, or germs in public restrooms, or how many of us forget our keys or our wallets, or occasionally flake out on a meeting? Are we obsessive compulsives? Do we a have undiagnosed ADHD? Many people have said, “Well, I do that. Everyone does that, don’t they? Does that mean I have a disorder?”

Well, it might. But likely not. It just means that you’re human. We all run off of the same basic central nervous system. I never said my daughter was an alien. It is just that her processes don’t function properly. To an alarming degree. To an incapacitating degree. She is malfunctioning.

I am not sure why this is such a hard concept to grasp. Before we had a diagnoses of any kind for our daughter, people always wanted to know how I knew there was anything wrong. It seems like such a strange question. After our daughter had been switched to a school for autism support, one particular mother finally admitted that she just looked too pretty to believe anything had been wrong.

I think people are actually angry that I am punching a hole in the carefully crafted façade of normal. If normal looking people could be disabled, than what does that mean for me? Or my kids?

It might just mean you are nuts too. Even pretty people can be disabled. And get sick. And have cancer. And get old.

I get it though, this need to believe in this invisible line between normal and abnormal. Something tangible to hold on to. For the longest time I kept asking specialists why, why, why? What does this mean? Why isn’t she walking? Why isn’t she talking yet? They would just look at me and shrug. “It could just be a developmental delay. It could just be where she is.”

So why do I call her disabled then? Well, because she isn’t capable of doing the most basic of things. Of meeting her milestones. Of staying in her grade. Of making friendships. Sometimes I think that people are annoyed that I am asking for help. That I have expectations for her, which I have been told before, by well-meaning people, to adjust. Never mind that sometimes it is by the same people who are fighting for their children to be on all stars, or the honor roll, or the travel dance team.

It seems that they just don’t want people to have special treatment. You are what you are, they might say. You get what you get. Maybe you’re just not smart. We don’t have to treat you nicer. We don’t have to have empathy. You’re not different. You’re not special. Maybe we are just better. It seems that is the point?

A strange psychology isn’t it? It seems oddly phobic. Oddly self-centered. Strangely paranoid and self-serving.

Maybe my daughter is normal after all.


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Why am I Still Dressing my Eight Year Old?

Today we forgot one of my daughter’s library books. It happens. The secretary at school graciously made the comment that getting three off in the morning is “a lot.” Right before she reminded me to leave the book home next time. “That’s how they learn responsibility.”

I promised her. Next time—responsibility. I’ll get right on that. Right after I get her putting on her own underwear. Or socks. Let’s not even get started on shoelaces. They make Velcro for a reason. And luckily, she is a girl who will probably spend a good deal of her life in heels. A dose of misogyny and sadomasochism has nothing on teaching a child to tie their shoes. Her brothers somehow magically taught themselves. Her older brother, the lefty, didn’t have a chance in hell of learning to tie them from me. But what do you do when your child can’t even put on underwear?

If it’s not the direction of the underwear—sometimes upside down, sometimes sideways, it is the material they are made out of, or the tightness around her legs. I have bought larger underwear, character underwear, plain underwear, and $40 per three pack seamless underwear, and the only consistency in our underwear routine is that I have to be in her room to help her put them on. That is, if we can find a pair she will tolerate. Mommy has tried selling her on the merits of going commando. “Look, Mommy doesn’t have on underwear either.” I can’t wait until that gets back to the teacher.

But, no, even that doesn’t work. She is holding out for the underwear. It has become something of a comic routine. That is, if I had a sense of humor at 6:30 in the morning. With a strong cup of java, I have on occasion been able to find the amusement in it. There I am, kneeling on the floor of her room like some sort of courtly jester, holding up different pairs of teeny underwear. The ones with the pink bears? “I hate that one.” The one with the hearts and musical notes. “I don’t like them.” These have pictures of Elsa. “I hate those. I hate them all.”

I have even wondered if I could fit into the Elsa ones. They were sure winners, and I hate to have to donate them. Do I dare even take out the sensory sensitive underwear made from seamless cushiony cotton? Like an animal rejecting her young, my daughter will shriek and recoil, backing herself onto her bed, should I even hold them at a close distance. She loathes being different. (Maybe she should start dressing herself like her brothers), I think unkindly.

While my sons have dressed, fed themselves cereal, and packed their own snacks (or eaten them while waiting for us to come downstairs), we are still working on underwear. I can feel the pressure mounting as I tick off the things that have left to be done– snacks in bags, field trip form, library books, nagging her brother to brush his hair (with a brush this time), and I quickly begin to lose patience with her.

“What’s wrong with these?” I bark at her, holding up the pair with the barking puppies. If I was wearing those all day, I would be sure to smile. I even make sound effects. Bark, bark, bark. That was a miscalculation. By no means does she want her underwear to bark. Nice going, mom. Another round of shrieking ensues, and I am starting to become anxious about the time. And then I get annoyed. I get angry. I pull out a pink pair like I mean business. I give her two choices like her therapists have always suggested, and whip them against the dresser. “That’s it now,” I tell her, like I have had control the whole time. “Pink kitties or musical notes?”

She comes over, grabs them, and stuffs them forcefully in her drawer, and then grabs the rainbow pair I took out in the first place. I am so relieved to be done with it, I stuff down this annoyance. Then I just get on my knees and start putting on her underwear for her while she plays games on my phone or prances her stuffed animal across my head.

While I sit there struggling for her to not just lift her feet (which seem cemented to the floor) at the right time, but also the correct foot, I wonder whether I am doing her a great disservice by dressing her. I am reminded that she started this skill in private occupational therapy almost three years ago. I know that I am indulging her. I know she is capable of getting her underwear on. It may take her several rounds. It may take fifteen minutes, as she trips, and grunts, and stumbles, putting both feet into one whole, or one leg in the wrong side, so she is wearing her underwear on her hip.

I remember I used to feel angry at the occupational therapist, a young, robust woman, with a no-nonsense attitude who would watch my girl try and put on her jacket in the waiting room, letting her meltdown and scream as she kept sticking her arm in the wrong hole over and over. When my daughter swung at her out of frustration or pinched the therapists arm, she would simply tell her no, and force her to start over. I hated her for it. It was painful. Humiliating. The entire waiting room was watching.

Maybe if I had done the hard work then, I wouldn’t be dressing her now. Sometimes, when we are not running behind, I will force her to do it herself. When we have found a clean, acceptable, rainbow pair of underwear with bows in the front that help her with directions.

Then we will have to find non-scratchy pants that don’t squeeze her underwear or have buttons that are too tight. Then will have to find shirts without tags that only have sparkles or rhinestones on them. And hair pins that are not for babies or have the word bobby in them. Or detangling spray that doesn’t make your hair too wet. We’re going to have to take baby steps. Or onesies or two-sies, or three-sies. Or in our case, eight years of painstaking too old to be doing this steps.

I can only be responsible for one thing at a time. We are at baseline here, just trying to make the slow torturous climb to self-sufficiency, and we are starting at the bottom with underwear. Maybe we will get to socks later in the year….and as far as responsibility…well, get back to me when she’s nine.

 


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From Pity to Power

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I clicked on my inbox this week and, to my surprise, saw that my daughter had received a birthday invitation. What I have come to view as a pity-vites for my very, wild child. I am grateful, yes, but also immediately adjust my expectations and assume the invites are sent out of duty. Or far worse, the dreaded pity. This time, I’m not so sure it is the only emotion that has popped up in my inbox. There just might be the slightest bit of competition, and I have to admit, maybe my daughter and I were the ones who motivated it.

For most of the year, my daughter was invisible to the mother who sent the invitation. When we used to bump into this mother and child at various school events, or those dreaded brownie meetings that I misguidingly thought might conceal my daughter’s social impairments, this mother will never look directly at my daughter. When she attempts to say hello, clearly uncomfortable with my daughter’s inability to make eye contact, she will address us in an overly phony, sweet cadence, nodding her head slowly to time her way through it. She expects not to receive an answer.   And then I almost regret telling people about my child’s struggles. I loathe the uncomfortable pity gaze and the forced greetings. But, when I don’t inform them, they view her disability as something else: a “shyness” or an “unpopularity,” and therefore, a weakness, a weirdness, an inferiority. Something not to pity, but to compete with. Something to walk by and note, and possibly comment on later, all the while feeling a smugness at their own child’s dynamic personality. This may sound paranoid, but I do not struggle with the same impairment as my daughter, and I can aptly read it on their faces. So I choose to call them on it. If they are going to be smug, if they are going to gage and compare, then they can also understand what the baseline is. I want to know that they are not winning the race, as much as they are competing with an opponent whose legs are tired, an opponent that never heard the starting gun. Unfortunately, by informing people about her struggles, I actively have chosen pity. And I thought pity was better. That is, until my daughter’s own birthday party came up. On your birthday you don’t want pity. And you certainly don’t want to be ignored. Every little girl should be the center of attention on her birthday. So we planned a party that would not only prevent her from being ignored or pitied, we planned a party that switched the balance of power just a bit, if only temporarily. And now I can see we hit our mark.

For pity or duty may be the impetus behind sending us the invitation, but it is competitiveness that drives the party. The pity-vite or guilt-vite is such an obvious and clear visual display of the mother’s ego, it makes me wonder, as I have many times, about her own social functions.   It is a visual confection of her daughter’s gymnastic prowess, triple images of her in blonde ponytail and shiny, spandex, contorting herself into brain bending poses. The obviousness of it is almost as painful as my daughter’s lack of eye contact. I almost expect the top of the card to read “look at me.” That is my first reaction. I roll my eyes at the sight of it. But then I am forced to admit to myself that I was guilty of having done the same at my own daughters’ party. We may have used it as a way to equalize. Maybe even a way to get even. I had leveled the playing field a bit, and now I was paying the price.

When my husband opens the email in our family address and shows me, we both have the same look on our faces. Dread. Our daughter has done nothing but talk about gymnastic classes. Her attempts at cartwheels are cringe inducing and painful to watch and I there is a valid fear that one of them might result in a trip to the emergency room. Of course, it seems every girl has to conquer to cartwheel and the basics of tumbling 101, and I try desperately try to remember what age the girls begin to “grow out” of it. No doubt, my daughter’s acute interest has to do with this perfectly, blonde and neurologically thriving brain child. Cartwheels, or any gymnastics for that matter, encompass all of the skills that my daughter lacks. Gross motor skills, balance, core strength, motor planning, and the ability to cross at mid-line (as we have learned from many of my daughter’s therapists, this is anything that requires using two sides of the body and therefore brain at the same time and crossing them) like patty-cake, or sitting Indian style, for example, or riding a bike). I think of it as a short circuit. When the wires cross, my daughter’s brain overloads. It is no wonder she will fall in a heap and scream and cry. It is heartbreaking.

What the mother of the pity-vite sees is her own child adeptly performing is not just “athleticism,” as most of us view it, but it is really a demonstration of the healthy function of her daughter’s brain. It is not jealousy that I have for her daughter’s future gold medals. Watching my daughter’s attempts to hold her hands backwards when attempting to cross a monkey bar, or moving her legs upwards rather than pressed to the ground when trying a backbend, or falling not on her hands, but on her elbows to do a cartwheel, I am seeing a live demonstration of the inner struggle of her brain. What the pity-vite mother sees is her capable, athletic child. What she sees in mine is not a disabled child, but a less capable child. When I have mentioned the difficulties my child has, I have had a mother or two say, “Maybe she just won’t be an athlete.” Indeed.

No matter how much I would like my daughter to skip the party, and the pain for both us, I know that it is right to go. Not just because my daughter will want to be there, but also because the little gymnast came to my daughter’s party. And I did something sneaky. I did a little showboating. I exhibited some smug competitiveness of my own. I planned a party that I knew would sideline the other girls. I planned something that for once would put my daughter at the top for once.

I decided to have, of all things, an ice skating party. In spite of our daughter’s physical struggles, when she was three, we signed her up for ice skating. We dragged her and her brothers out of the dreary snow and into the rink. She had pleasantly shocked us by not crying once, even though she sat on the ice most of the time playing tea party with the stuffed animals they used to incentivize the children to stand. Her brothers have stuck with it, and gone on to play travel hockey, and she has, unimaginably, stuck with the lessons. While she is no Tara Lapinsky, she can skate. She is pretty fast, relatively speaking. She can actually glide. We often joke that having always struggled with balance and coordination, the ice might feel normal to her.

She will never be one of the lean, limber girls in their spandex leggings and graceful leotards spinning elegantly around the ice. But, by damn, she can stay up on those skates. And with the fierce determination that special needs children develop, if she falls, she will fight to get back up.

So I did what many egocentric parent does and I planned party in my child’s starring activity. Everyone wants their child to shine, but for us it was more about setting up our daughter for success. Firstly, we hoped and prayed that girls would show up. But if we managed that hurdle, then we wanted there to be an activity that she could actually participate in. In fairness, it really wasn’t wholly about her being the star. That is rarely an indulgence we are offered. We had to worry that she wouldn’t sidelined at her own party. Not just the one who doesn’t crack open the piñata, but unable to socialize, or communicate, or skip, or swim, or have the necessary motor planning for most party games. Sidelining was really the least of it either, as we envisioned her common practice she has of all out melting down in front of parents and kids alike, or worse, possibly getting aggressive. Some of you might wonder why we would choose to have a party at all, and I envy you the luxury of being able to only wonder.

We planned the party with a Frozen theme, perfect for an ice skating party, and all the girls’ latest obsession. It also allowed for safety. She couldn’t hit anyone if she was skating. And painful social games would be non-existent.

The theme couldn’t have been more perfect. And it was also perfect in its planning because it put my daughter in a position that she has never been in before—not even close–she might actually be the most accomplished at a skill. I guessed and secretly hoped that many of the first graders had never skated before. If they had, they had unlikely had lessons. There were ballerinas and gymnasts and t-ballers, but I hadn’t heard of any figure skaters yet.

We gave the girls’ snowflake stickers and a frozen cake, and I stuffed down my guilt by going overboard on frozen themed party favors, even making them homemade snowflake ornaments. I knew exactly what I was doing as parents and children arrived, wide eyed and shivering, no one knowing exactly how warm to dress, some never having tried on skates, some parents needing to stay to either skate with or at least stand by their children for encouragement. Now that drop offs are beginning to wane, I am becoming the only parent that always has to stay. Not very fun at the swim party, where I embarrassingly have had to get in my bathing suit in front of a mother and father I don’t know very well.

Now I saw the look I often have in other people’s faces. Concern and uncertainty. Embarrassment that they may have to participate in a child’s skill that they themselves have no capacity. I saw many of the cute girls from brownies and ballet, for once not being center stage and perfect, having to slip into ill-fitting brown rental skates, as my daughter took out her sleek white ones with the pink runner covers. While other girls clutched uncertainly to the walls, feeling off balance, overwhelmed, unsteady, and filled with anxiety about being left, or of falling down, or simply frustration that other kids were doing better, my child skated effortlessly in her beautiful Elsa dress. It was exhilarating. The metaphor of the movie even seemed to fit. My daughter was the misunderstood ice queen, unable to control or regulate. Wanting badly to connect, but frozen out, misunderstood. And today, in the cold, frozen rink, it didn’t matter. She was elegant and beautiful. She did look like the queen.

Before you think I am purely selfish, I was of course on hand to help the other girls, as were her brother’s, to coax and hold, and assist them. It was only after I booked the party that I realized that lessons were not included. I tried to find a teacher, but when one wasn’t available, I thought, hey, my daughter can’t cartwheel, or swim, or perform ballet, even when it is taken for granted that the kids should have the skills to do so. So they could all tough it out and learn too. In truth, they did, as I knew they would. And by far faster and with more ease than my daughter had. Hours to her years. By the end of the party, most, if not all, were on their feet if not taking those first awkward choppy steps.

And, of course, gymnast girl was at the top of the heap. She was the only one of the group to come in her own skates. I could see the fierce determination in her face as she frantically chop, chopped on her skates, looking like one of the Peanuts gang, trying to keep up with my daughter’s glides. It was slightly euphoric. She had probably never in her life come in second. And may never again, against my daughter. But, today she was most definitely second.

When the mother came back to pick her up, I saw from the ice that she had cornered my husband. She kept telling us both that her daughter had only skated once. She quizzed and quizzed us about lessons. We knew before the day was out that her little athlete would be signed up for figure skating. Sooner or later we would have to pass her in the rink on her way to junior Olympics. But today was not that day. We were having Frozen cake with thick confectionary sugar icing and rock candy. We were celebrating.

Now it is her daughter’s turn. The pity-vite is sitting in my inbox. Every time I think about clicking on it, I see her daughter’s blond ponytail and shiny purple leotard. It is our turn at the bottom. Her turn to shine. I realize that my daughter is invited mostly out of duty. And I know that when her daughter flips and turns on the bars at the amazement of our friends, that the mother will give me that patronizing smile that graced my lips at my own daughter’s party. I want to turn it down. I really do. There is nothing I have come to loathe more but being pitied. But at least I have the knowledge that once, if only for that one day, my daughter was not the pitied. She was the competition.

 

 

 

 

 

 

 

 


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Whose the one without social skills?

The irony never ceases to amaze me that the people least likely to accept “diagnoses” are the very people who should be given one. “How do you really know?” I have had many of these people ask me, in a very cynical, droll. “Observation,” I want to say, narrowing my eyes in a meaningful way.

Autism diagnosis may be considered new, but spectrum disorders are certainly not. I see them everywhere. The way that kid saw dead people. The way the Wayne’s brothers saw stupid people. I see a lack of social awareness in so many of the adults that I meet that I sometimes wonder if my daughter isn’t on the spectrum, but is just so highly sensitive to other people’s crazy that it makes her afraid to interact with anyone. It certainly does for me.
This past Sunday greeted me with such a strong dose of self-centeredness by another mother, I felt the need to slap her, (of course, in anger), but also as a form of social service. So that she could be aware that someone existed outside herself. The target of my unsolicited face slap, was not just a mother, but the mother of a boy on my son’s team, and a pregnant mother no less.

I had just ushered my very wild child out of her bed, and the comfort of a lazy, warm, last week of summer into the frigid foyer of the hockey rink, where she was forced to meet her arch nemesis: the Boar’s Head ham sign in the rink cafe. The sight of it makes her gag and retch on the floor. She also gags at the sight of precious moments’ dolls, miniature pink baby-dolls, and her brother’s embryo-like jellied alien he got from the gumball machine. Do you see what I’m saying? There’s an intuitive wisdom here.

However, it makes watching her brother’s hockey games an impracticality, as my very wild, sensory laden child was refusing to sit inside the rink where it is frigid cold, or in the dreaded café with the eyes of the dreaded Boars head ham bearing down on her. I had only just entered the rink and turned the corner, when she froze in her tracks and disappeared in a fugue like state of terror. We used to think these were possibly seizures. We are still not entirely sure what is happening. Sometimes her processing disorder, whether visual or auditory, simply requires so much effort to understand something she is looking at or thinking about, she will appear to stare into space. Other times, she is literally frozen, her brain terrified, in a state of such panic that she cannot think or move.

She certainly didn’t register the gaggle of middle aged mothers huddled together yakking away about back to school sales and carpooling. One of the mothers, who I happen to understand works as a teaching assistant, smiled and said hello to my very wild child, who was pushing past my leg and staring into the café with urgency.

This mother smiled gently, and took the lack of response without personal insult or reprieve, but saw it as it was, understanding that it is much more important that she deliver the kindness than to receive it. That on some level, (we are discovering on many levels), the message was processed and received, even if wasn’t responded to.

The pregnant mother, who happens to be the youngest, but also the mother of two boys, also turned to give myself and my daughter and overly enthusiastic greeting. Smiling widely and bending over to speak loudly and concisely, as if my daughter were not socially impaired, but deaf. I most certainly appreciated the effort and the emotions that follow when my daughter ignores such interactions are always embarrassment and sadness, and not anger at the other person. Although, when the person seems to have the expectation of a response, it is hard for me not to feel resentment. As if they are setting us up. It ceases to be a kindness and instead a test, of sorts, that both I and my daughter have failed to pass.

When my daughter kept staring into the crowded abyss of the café without responding, the woman turned to the mother she had been gossiping with and explained to her that she had an autistic neighbor who responds the same way when people approach him. And then she waved her hand in front of her face to demonstrate his glazed over expression.

She did this while I was still standing there with my mouth open, waiting for my daughter to interact. While my daughter was standing there in plain view. In ear shot of her. She did this in front of the two other mothers. Mothers I will see every weekend for the next eight months.

I can only describe this as surreal. As I stood there, trying to figure out what to do, as my daughter’s body was pushed against me in what I recognized as a fight or flight response I have come to recognize, I felt guilt. Guilt for forgetting to prepare her for the Boar’s Head ham, for failing, once again, and allowing myself to regress into a comfortable state of normalcy I continue to feel entitled to. A normalcy others take for granted. Now I had the same internal state of panic surging through my own body: racing heart, shortness of breath, difficulty swallowing, sense of panic, overwhelming sadness, and the need to fight or flight.
It seemed unduly cruel that this mother just turned away from me as if I no longer existed. Just turned her side to me, after waving her hand cruelly in front of her face, and went on to talk about organizing her closets, as if there weren’t a mother and child standing next to her in crisis. It is unrealistic to expect that she could understand the state of duress that my daughter’s little mind and body were experiencing at that moment, let alone mine, but it is sad. It is sad because if anyone should be capable it should be that mother who was at that moment growing a life, and nourishing the complexity of dendrites and axioms and neurons that would make her child capable of the very small, simple action as a hello.

Clearly, she wasn’t capable. She didn’t even understand the hurtfulness of her actions. She lacked the social cues and most certainly the empathy. So when people ask me over and over, how I can possibly know or understand what my daughter struggles with, or what her diagnosis is, I can only shrug and say, “Observations.”


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Everyone should have a little spunk

 

Our very wild child teaches me something new everyday. Sometimes, in one day, she can teach me two diametrically opposed things. And they can both be true.

This past mother’s day she taught me this: It’s good to have a little spunk.

Since we were already out-brunched from Easter, I voted to take our two sons and our “somewhere on the spectrum-of-things” daughter for a short drive to Bushkill Falls in the Poconos. I worried how well she would do on the hike. I worried that taking a child with such an obvious lack of gross motor skills and coordination was quite a negligent thing to do on, of all days, Mother’s Day. I had visions of her losing her balance and plummeting off the side of one of the rickety wooden railings, or of her melting down half way through the hike, dangerously flailing at the peak of the falls. My memories of Bushkill were a mixture of New Jersey and Pennsylvania families, crammed together on narrow paths, along with crowds of New Yorkers. I imagined my daughter throwing one of her legendary tantrums at the precipice of Bridal Veil Falls, while a line of irritated Manhattanites grumbled behind us, being shafted out of their yearly dose of planned nature. At least they would be used to the occasional crazy person. It even crossed my mind that we could possibly end up stranded at the top by the falls, unable to move her heavy stiff body as she kicked and flailed on the ground, demanding to get in the car. They would have to fly in park rangers by helicopter to get us out. I could picture it on that weird bit of news that sometimes pops up on my phone. ‘Parents stuck at top of waterfall with Aspergers daughter.’

Or, I thought, it could work out. She might love it. As she often does, I reasoned that she just might surprise us and have more energy than the rest of us. She has a surprising amount of resolve for a child who is exhausted by the mere act of putting on underwear. Besides, I am learning to adjust to my daughter’s wild and ever-changing moods, and the best way to do this is to be prepared for anything. With kids like my daughter, priming is everything. Besides, we had made this trip pre-kid with our obstinate overweight beagle, and we survived. We, meaning my husband, had been forced to carry his tubby, obstinate hind the last thirty minutes, but we had made it. I was determined we could do it with our very obstinate, wild child.

The fear of plummeting off a mountain side may have derailed a normal person; but it is not for nothing that the wild-child is mine. When I have an idea, it sticks with a single-focused determination that a bull could not dislodge. We were hiking. And, as many with children on the spectrum know, tantrums and tumbles are something I’ve grown to expect. Like earthquakes to a Californian. You just kind of hold on tight until the tremors are over, and then get on with your day.

The trouble soon began. In the line.

Our Wild Child hates lines. She hates waiting. I know, I know…who doesn’t? There annoying. They make you antsy. They make your muscles twitch. They make your skin itch. And sometimes you feel like you want to scream at the person in front of you to hurry up. And she does.

“I hate these people. I hate lines. Ya jerks,” she says, with a New York accent, for some reason, though I lost my own years ago, (or so I thought).

This embarrasses both her brothers, who start pulling on her shirt, or try grabbing her into a bear hug, (but knowing better than to get their fingers anywhere near her mouth). She will then will pinch and also call jerks.

She began repeating this over and over, with a crazed jerking of her head. Sometimes I think she is even aware of the absurdity and empowered by it. I swear if I had remained a Catholic, I may have tried to have her exorcised by now.

I could feel the heat start to crawl up the back of my neck, and my face begin to flush. As is my habit whenever we are out in a public situation, I  assess my surroundings. I look for quick exits. I find the closest bathrooms or possibilities for urinating outside. Like my husband’s astute eye for cash machines and gas stations, I find possible places to escape for meltdowns. I also assess the crowd for judges and other children behaving even remotely odd. I’ve become quite good at identifying other children on the spectrum, and even those with slight delays in motor skills, or even those who are just plain difficult to deal with, or slightly off, or some who compulsively pick their nose. Believe me, I will notice. And be relieved. Even if there parent’s don’t get it, I can live with the calm that their child has a nose picking problem and they don’t even know it.

I looked around, assessing for friend or foe. Sensitive to my daughter’s acute sensory needs, I have become like a wild animal, taking in dangers in the form of smell, sight, or sound. Once my daughter threw up at the mere sight of a boar’s head ham sign. I have learned to guard against these dangers.

Approaching the admission line we see an Indian woman just exiting the trail. My daughter pauses at the entrance and begins yanking on my arm and screaming that she wants to hike. The Indian woman glances at my daughter and smiles. She sees nothing wrong. My daughter could be any other young child, anxious to get on with the fun. Indeed, she is a beautiful child, with a full face and a full head of beautiful brown hair, though its severe tangles often border dangerously close to a state of Rastafarian dreadlocks. Other than this, she appears absolutely common.

The woman was wearing the most beautiful, teal silk sari and silk pants, and it struck me that on her feet were a pair of bright purple Reebok sneakers. Of course, I’m not sure what type of footwear it expected her to be wearing on a two half hour trek uphill to spot a waterfall, but the quirkiness of it made me smile. It was oddly comforting. I was too busy staring and my wild child started yanking impatiently on my arm with the full weight of her 60 pounds, saying with viciousness, “We have to GET going.”

The Indian woman smiled at me. “She is ready,” she said proudly, as if they were two like-minded spirits. The girls with spunk, both colorful and seemingly at odds with themselves.

Next off the trail passed another elderly woman in track pants and runners, looking more fit than I had since before kids. She was wearing a fanny pack and fluorescent sunglasses, and a hatless visor, looking resolute and nonplussed and not the least bit concerned with any of us. There goes another spunky one, I thought.

We got into line and there was a young couple behind us. I assessed them as newly dating. She was wearing optimistically bright yellow shorts, along with heeled sandals, I kid you not, and her boyfriend stood there unassuming in a floppy, hiking hat. Amateurs. The helicopter is not coming for us, I thought smugly. Still, they looked freshly sun-screened and well-rested, and I begrudged them their freedom and optimism. They wouldn’t get our problems. So I didn’t really need to care. Even though I do. Even though I see her take glances at my daughter and know that she thinks that their kid will also be sun-screened and wait patiently in lines and not wipe snot into her forehead with the back of her palm. I want to tell her she is wrong, and advise her to freeze her eggs. But I can’t, because suddenly my daughter wanted to hit the man in front of us.

The man didn’t notice, thankfully. He was immersed in conversation with his son. He was wearing a shirt with a camouflage background advertising some kind of hunting company, which made me feel the need to observe him carefully to decide whether he is the type to use mother’s day hikers as target practice. Also, I suppose, that I am the judgmental one. To my credit, I have to keep an eye on him, so that my daughter doesn’t kick him in the groin. I am holding her shoulders and wincing, but trying to make it look like I am smiling. “Isn’t this fun?” my face was telling passersby. I looked like a crazed female version of the joker.

I wonder about the man and his son and their hunting pastime. Everyone has their unique hobbies. Their singular interests. Their odd idiosynchricities. I wonder which one my very wild child and I will share one day. Maybe when we get home we will purchase a pair of matching purple Reeboks.

Just about that time my very wild child had become incensed with the waiting and began jerking her head around and screeching, “When are we going to get there?” which I know is build up to no holds bar freak out. My oldest son is beginning to look pale in his face, letting his hair hang in his eyes, and talking to me in the tense way has through his teeth. “Mom, she’s going to freak out,” he says.

Unable to restrain her and, say, tape her mouth shut, I tried the next best thing and started to distract her by pointing out the family ahead with a pet Yorkie wearing a skirt. “Look at the cute doggie.”

“I hate them,” she says. And then she really yells for me to stop speaking in her ear.

A few people turn around and stare.

For some reason I always end up laughing nervously and smiling is going to somehow downplay this. “Isn’t she silly?” I want to say. “Kids say the darndest things.” Though inwardly I am ready to crawl into a hole, I usually end up leaning down and whispering for her to be quiet and plead with her that people are staring at her. As if that is going to make her “hate” them any less. They are taking too long and they’re staring at her. I spot the Indian women in her Sari and sneakers leaving the gift shop next door with her family and composed granddaughter. I assess her to be about four, several years younger than my wild child. She is composed, -, alert, patiently waiting for her family, and dressed impeccably in purple shades and purple sun hat. She is cool as a cucumber, and surprisingly American looking next to her traditionally Indian elder. I feel the familiar combination of embarrassment and envy. Irrationally, I think that maybe if I were Indian my child would be better behaved. Maybe if I wasn’t one of those rash, crude, overindulging Americans, she wouldn’t be screaming, “I hate lines, I’m going to kill the line.”

Maybe we should move to India.

My son tugs on my shirt. He is quiet and self-conscious, and absolutely mortified at poor behavior. It is a bizarre reality that they have emerged from the same womb, expelled into the same world, co-existing in the same household through some chance of genetics and time.

“Mom,” he says, through gritted teeth, “She is embarrassing.”

I look at my husband pleadingly, but he is busy examining the map.

“It’s taking too looong,” she shrilled. “Whyyyy…IS…IT…TAKING TOO LONG,” she said, with her voice deepened, for the life of me, like a transsexual who has just started hormone therapy.

Luckily, this made both my son’s laugh.

“What the hell?” I mouthed to my son. I did this once accidentally, when she had thrown herself inexplicably into the street, and the phrase had stuck and become a running tension tamer. I probably shouldn’t say, “What the hell?” to my nine-year old son, but this is the least of my problems. And, unfortunately, they’ve heard far worse.

My wild child swung her arm out like she was going to attack the hunters.

“Woah, Mom, she’s acting crazy.”

I looked around.  I assess my surroundings.  I check for exit strategies, possible victims of my daughter’s flailing limbs, accusatory stares.  Friends or foes.  Gathered around the ice cream stand, I can see the colorful Indian family in their saris and athletic shoes, seemingly unaware of the dichotomy they present.  A family who, without irony, dresses their Yorkie in a clown skirt, a family that advertises their love of ammo, and a woman who hikes in heels.

“Sweetheart,” I told him. “Nobody here cares. Nobody is paying any attention to us.”  He looks at me skeptically.  His eyebrow raises at the crowd.

“That family put a skirt on their dog,” I say quietly.  I make a wide circular gesture at my head.  “Cuckoo,” I sing.

My son leans protectively into my waist and begins to laugh. I breathe a sigh of relief.  It is the common signal of crisis diffusion.

“And you know what they see when they look at us?” I ask him.   We both look at his sister who is jerking her body maniacally and repeating, “It…is…taking…too…long.”

I gesture to his sister and make wide circles at my head, “Cuckoo.”

Maybe it is wrong to call one of my children cuckoo. Though let’s face it, we’re all a little cuckoo from time to time.

Suddenly my son’s shoulders started to relax. He stops talking to me through his teeth. He looks at his sister and laughs. With love.

“You dumb jerk,” she mutters. She is a special kind of cuckoo. The kind with a little extra spunk.

“Look, Babe, the line is moving.”