myverywildchild

The chaos and mania of parenting a child on the spectrum


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“Unconditionally…I’ll love you even if you bite me.”

Mothers-Day

Today my very wild, child bit her 10 year old twin brother because …he tattled on her…for sticking her finger in the dog’s eye.

And it’s only the third day of summer.

She was trying to get a “sleepy” out of the dog’s eye, and was no doubt on the verge of blinding him when both of her brothers tried intervening. Her father and I were pretending to enjoy ourselves on our deck, when we heard the blood curdling shrieks. Her brother cannot help that his voice, at ten and a half, has the shrillness of a soprano Eunuch after having inhaled a tank of helium, so I try not to let it enrage me. The problem is that high pitched shriek could follow the dismemberment of a sibling or an unfair battle move in a game of Call of Duty.

With no ability to discern, we ran to the house with adrenaline pulsing to find our soprano Eunuch in tears, his shirt pulled down revealing some horrific , likely bleeding, injury.

“She bit me,” he screamed.

We thought the biting phase had ended at least, well, months ago. Her phases are usually replaced by equally exhausting and egregious behaviors, so for a quick second instead of being horrified, my sped up adrenaline juiced brain thought, “Ah, biting…we haven’t bitten in a while,” and rejoiced in that small celebration. But that was quickly followed by, “Oh, God damn it, she’s freaking biting again.”

And then all rational, logical thought was stamped out with the screams of our little vampire. Hair flying, limbs akimbo, kicking the screen door like a tiny Linda Blair.

“I didn’t do anything!”

Anything turned out to be a teeth marks deep enough into our son’s shoulder that our pediatric dentist could have used it to mold a new set of child size dentures.

“What the hell is the matter with you?” I yelled.

“I didn’t do it!” my wild child yelled, continuing to pummel our door with her feet.

There was no showing her the injury. No apologies. No sanity at all to be found.

My husband had to find some safe way to get her upstairs to her room, while I bandaged and soothed our little Eunuch.

It turns out his screams were mostly fueled by the horrifying looks on our faces which had convinced him his sister had left him disfigured.

“What does it look like? What does it look like?” he screamed on repeat, until I was almost afraid to look myself.

Our 11 and three quarter son (I refuse to except that 12 is coming) danced around like Mohammed Ali recounting the sordid details. I picked up on “Poking the dog in the eye,” “Told her to Stop,” and “Little Psycho.”

When my husband came back down, we all huddled in the kitchen, directly below her room, listening to the sounds of pounding and slamming coming from above, like refugees hiding from the sounds of artillery.

As my husband and I ranted a post mortem, repeating that we were afraid we would have to send her to live somewhere else, my 11 and ¾ son kept blurting “little psycho” and said he wished she would go live somewhere else. “Will she? Get sent away?”

“She could,” my husband said. “If she doesn’t stop hurting people. But we are going to do everything in our power to keep that from happening.”

That has always been a priority and concern for us, making sure that we keep our boys happy and protected, and at the same time preserving their love and support for their sister.

Sometimes it isn’t easy. For any of us. I have moments of thinking that she would be better off somewhere else.

“You have to remember that your sister has problems with her brain,” I told my boys. “Remember and feel sad for your sister that she is going to suffer, and we have to love her unconditionally.” My voice cracked when I said unconditionally. I am not sure if the boys know that term—they are bright—they pick up on so much on their own. They have none of the struggles of their sibling. They know nothing of the intellectual tangle that their sister drowns in.

But they stopped. And stared at me. With that face that tells me that they know. The game is over. The adult is broken. She is telling the truth. No holds barred.  No bullshit.

In that moment, they got it.

Unconditionally. When our very wild child heard the Katy Perry Song, one of her favorite singers, she said, “This is a little bit sad, isn’t it?”

And then the other day, she asked me what it meant. I told her, “It means I love you no matter what.”

She wanted to know how that could be if you are angry. I realized that maybe she understands far more than I’ll ever know. I felt overwhelmed with all of the internal thoughts I will never be privy to…my husbands, my child’s, my parents… of all of my own, private and soul baring that my heart yearns for someone to dig out.

“But, how can that be?” she asked.

Because you can be angry with someone and still love them.

She pushed and prodded at the fairy glitter play dough we had made together. “I guess,” she said, unconvinced.

I’m not sure how it transferred from my brain to hers to deduce the fact that conditions are rules. Maybe I was projecting. I wondered if she had figured out that conditions were the rules, as in: here are the conditions. I’m certain she has never heard this phrase. Somewhere, somehow, my child who struggles with inferences, was inferring…how could I love her…weren’t there conditions to love? Like not biting? Or hurting people?

She had nailed it. She was calling me out on my shit.

“It means that I love you, even if I am upset with what you did. I can be mad at you for a little while, but I am not going to stop loving you.”

She didn’t say anything. She didn’t even nod. She just paused for a minute. And then went back to coloring. I like to think, in that moment, she got it. And that, in that moment, I promised to make it true.

 

 

 

 


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Normal, Typical, or Downright Cool?

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This weekend I had a birthday party for my 9 year old son. It was a magic show. One of the mother’s said, “Oh, a magic show? At 9? Well, that’s ok.”

Um…thanks?

This same mother once told me that her boys “are just normal” when I politely asked if they had any food allergies. “Just normal boys,” she answered. I wonder if a magic show isn’t normal? I wonder if 9 year olds are somehow beyond magic. And Santa. And imagination. Maybe they are too old for happy?

I suppose this women heard about my abnormal daughter. I don’t’ know….Normal, typical…I’ve always felt the language slightly stilted, laborious and stiff. And when it gets right down to it…meaningless. Though everyone wants to be normal, not everyone is typical. I guess that is the point. In most ways, though, my son is typical. When compared to his sister, he is just a regular run of the mill kid. He usually does his homework. He sometimes says inappropriate things. He is too lazy to tie his shoes, but he knows how to do it. He could be in a higher reading group, but he hates writing his responses. He can play soccer, but would rather turn somersaults in the goal.

He can make friends. He just doesn’t make friends with everyone. His sister…has a hard time making friends with anyone. She is his twin and though they are a different gender, and in different grades, and even now in different schools, I often discount how much her difficulties have impacted his. Or maybe how they have distracted me from his own. However “typical” he may seem, like his sister, he can be rigid. He likes to control games. He is prone to saying things like, “Follow me…,” to his friends. He has even fired a few from some of the secret “Clubs” he has formed. One of his friends from kindergarten tattled on him, telling me, “He is bossy.” I could only nod empathetically. I’ve spoken to him about it many times, but I’ve finally come to the conclusion that he is going to have to learn through the school of hard knocks.

He just likes things his own way, and once when I had to stop by the school during midday, I spotted him all alone on the asphalt playground, My heart sunk when I saw him, but when I pulled my car around and rolled down the window, he called out, “Mom, I’m fine. I’m meditating,” and didn’t want to discuss it further. He shies away from the all the boys playing soccer in masse at recess, and the newly built “ga-ga pit,” (the modern form of dodgeball). While he is small, he is, unlike his sister, capable at sports, but he still prefers games of wonder and imagination. Well into third grade, he clings to games of dragons and knights, ninjas, and powerful wizards. I joke that he will become one of those odd Dungeons and Dragons kids. It isn’t just the judgmental mommy at his birthday party…any parent’s comment that their children have “grown out” of imagination games. I wasn’t aware that you could “grow out” of your imagination. What a sad thought. How would they feel if there child “clinically” struggled with imagination. Hmmm….obviously they can’t “imagine.”

In any event, the “Judgmental Mommy” had just moved here recently and she informed me straight off her son had previously played with several other, popular boys. She preceded to name three of the older boys in the grade, all gifted students and travel sports players. She wondered, oh so un-subtly, if my son was the reason for the demise of those friendships. Her son liked playing Ga-ga before meeting mine, she told me. There was a gaga tournament coming up, and wouldn’t you know it, the boy came to school and informed mine that he is mother told him that he needed to find a new best friend. My son had only the one playdate at his house. I wondered, did he curse? (Butt references, and other choice phrases, had become soup dujour with my boys), or had he been plain ol’ bossy? This couldn’t really be all about him not wanting to participate in a child’s Ga-ga tournament, could it? Apparently, the mother had spent the playdate trying to steer them toward sports games, so I had a sneaking suspicion it was.

I know the pain of having a child that does not have the skills to participate in athletics—I feel it acutely for I feel it for my daughter. I can’t imagine how awful if it would be if my son actually was on the spectrum, given that sports, and more generally, size, are given such importance among boys. You are either a Gifted Student or a travel player, or you are someone the other boys have since “Grown past.” Yes, girls have ballet and gymnastics and travel softball, but it is far more acceptable and expected for girls to play imagination games. To play mock social games. To play fairy and princess and Barbie. (My daughter struggles with these as well. For my son to love imagination games? Somehow, it is the kiss of death.

Ironically, my son actually plays hockey, which requires more speed, agility, endurance, and athletic prowess that most of the star soccer players he would ever encounter. It is a fringe sport though, and separates him from the cliques at school. Something I am grateful for at times, as our daughter so often keeps us on the fringe, I have come to embrace it. Not everyone knows that he does this though, so he is ousted. Regarded as one of the “out” boys. I told my son to continue to be nice, but to seek other friends. Through hockey, he has found many friends, and they love his quirky, odd, and outrageous ideas, like wearing a ninja costume under his hockey mask, or singing the words to “I’m so Fancy,” for an entire practice.

It wasn’t long before he and “normal” boy were hanging out again. He was even invited to his Magic Birthday party. The mother seemed shocked when she saw twenty other children there, running around chasing after my “Abnormal” son. It was silly. It was slightly dorky. I’m sure the magician we hired was considered a “dork” as a kid. My own son originally wanted to go dressed in a three piece suit and top hat, but opted to just wear a wand and hat. Hardly typical, but I think it is downright awesome. I wish he had done it. I have to say, there wasn’t one boy there who didn’t want a magic eight ball. And I have a prediction for them.

They might be normal. But not one of them is as cool as mine.


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Our Psychiatrist Has Us Hooked

Yes, my daughter is on Zoloft which, though non-addictive, is difficult to wean from. Last year when we sought out a psychiatrist, my daughters meltdowns were so often and extreme that we were in crisis mode. She needed help. Her brain chemistry was not allowing her body to regulate. It was necessary. Gratefully, I got a recommendation from a friend who has two sons on the spectrum. She had seen this psychiatrist and had immediate and positive results with her sons. She warned me that the psychiatrist was expensive and out of pocket. No matter—we were desperate for help, we were terrified about finding a qualified person, and we were willing to pay the cost. What we didn’t realize is what narrow options we had and that choosing this person to medicate our daughter not only made her dependent on the medicine, it makes us dependent on the psychiatrist. We are, essentially, hooked. Indefinitely.

Of course, it is worth it when you are receiving the right treatment for your child. It has been a god send for ours. The Zoloft has decreased her tantrums, her aggression, and a great deal of her ocd behaviors. (We have judged her progress by the degree to which she gags at random objects, i.e. miniature pink baby dolls, a stuffed rabbit, or a Boars Head ham sign). However, it has been a gradual climb, and at a year now, we are still testing out the dose. It is considerably low, and the psychiatrist has admitted she wants to proceed with caution. Which was more than ok with us. After one increase, our daughter had a “bad day,” physically acting out and throwing things around her support classroom. These kinds of surges can happen when a dose is increased. So we have proceeded with caution. We have checked in frequently with the doctor, and with each frequent check, we owe the psychiatrist another exceedingly high fee. Without giving specific numbers, my husband has pointed out that if she works a forty hour workweek, she earns an excess of a million dollars a year. Quite a fee.

Of course, we could go through our insurance. It’s not as if we have an obscure insurance plan. Even with a pricey Independence Blue Cross coverage, it was difficult for me to find providers in the mental health field. Few prescribe to children under eighteen, which of course gave me pause about our decision. But I have seen the difference. I know that it was simply necessary for my daughter, at least at the time we started. If I had gone through our insurance, most practices I found either had a three month wait list, or required that my daughter receive six weeks of therapy. Meanwhile, she was having such severe meltdowns at school that she was once barricaded under desks. We didn’t have three months.

As the private Psychiatrist said, “That’s the beauty of private practice.” The other “beauty” of it is that I am beholden to her anytime I fill a prescription. At least for now as we work out her dose. Our half hour appointments cost more than I spend on two weeks-worth of groceries. And should we go over time, and actually discuss the behaviors and emotions of the family, (the basis for determining how our daughter is doing), doc is sure to charge us for the fifteen minute over time. And should I feel nervous and need to email or call her during an unscheduled time, because I accidentally skipped a dose, or my daughter is having a stomach upset? I do not always receive a response, and am gently reminded that we may need to schedule an appointment.

I’m not sure what her “Maintenance” fees are, but I did research another private psychiatrist. I thought she might have a better “bedside” manner. She did. She also charges a third more. At least she makes it clear she is charging the extra fifteen minutes of therapy. Fifteen minutes? I’d be better off doing yoga, or lighting a candle, or deep breathing. Now I wonder if the same isn’t true of our daughter.

So until we reach some sort of maintenance dose, the psychiatrist has us all hooked.

 

Yes, my daughter is on Zoloft which, though non-addictive, is difficult to wean from. Last year when we sought out a psychiatrist, my daughters meltdowns were so often and extreme that we were in crisis mode. She needed help. Her brain chemistry was not allowing her body to regulate. It was necessary. Gratefully, I got a recommendation from a friend who has two sons on the spectrum. She had seen this psychiatrist and had immediate and positive results with her sons. She warned me that the psychiatrist was expensive and out of pocket. No matter—we were desperate for help, we were terrified about finding a qualified person, and we were willing to pay the cost. What we didn’t realize is what narrow options we had and that choosing this person to medicate our daughter not only made her dependent on the medicine, it makes us dependent on the psychiatrist. We are, essentially, hooked. Indefinitely.

Of course, it is worth it when you are receiving the right treatment for your child. It has been a god send for ours. The Zoloft has decreased her tantrums, her aggression, and a great deal of her ocd behaviors. (We have judged her progress by the degree to which she gags at random objects, i.e. miniature pink baby dolls, a stuffed rabbit, or a Boars Head ham sign). However, it has been a gradual climb, and at a year now, we are still testing out the dose. It is considerably low, and the psychiatrist has admitted she wants to proceed with caution. Which was more than ok with us. After one increase, our daughter had a “bad day,” physically acting out and throwing things around her support classroom. These kinds of surges can happen when a dose is increased. So we have proceeded with caution. We have checked in frequently with the doctor, and with each frequent check, we owe the psychiatrist another exceedingly high fee. Without giving specific numbers, my husband has pointed out that if she works a forty hour workweek, she earns an excess of a million dollars a year. Quite a fee.

Of course, we could go through our insurance. It’s not as if we have an obscure insurance plan. Even with a pricey Independence Blue Cross coverage, it was difficult for me to find providers in the mental health field. Few prescribe to children under eighteen, which of course gave me pause about our decision. But I have seen the difference. I know that it was simply necessary for my daughter, at least at the time we started. If I had gone through our insurance, most practices I found either had a three month wait list, or required that my daughter receive six weeks of therapy. Meanwhile, she was having such severe meltdowns at school that she was once barricaded under desks. We didn’t have three months.

As the private Psychiatrist said, “That’s the beauty of private practice.” The other “beauty” of it is that I am beholden to her anytime I fill a prescription. At least for now as we work out her dose. Our half hour appointments cost more than I spend on two weeks-worth of groceries. And should we go over time, and actually discuss the behaviors and emotions of the family, (the basis for determining how our daughter is doing), doc is sure to charge us for the fifteen minute over time. And should I feel nervous and need to email or call her during an unscheduled time, because I accidentally skipped a dose, or my daughter is having a stomach upset? I do not always receive a response, and am gently reminded that we may need to schedule an appointment.

I’m not sure what her “Maintenance” fees are, but I did research another private psychiatrist. I thought she might have a better “bedside” manner. She did. She also charges a third more. At least she makes it clear she is charging the extra fifteen minutes of therapy. Fifteen minutes? I’d be better off doing yoga, or lighting a candle, or deep breathing. Now I wonder if the same isn’t true of our daughter.

So until we reach some sort of maintenance dose, the psychiatrist has us all hooked.

 


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Aspergers: To Tell or Not to Tell?

I have always told people about my daughter’s “issues.” I hate to phrase it that way. I know I may be doing her an injustice by broadcasting her personal struggles. I know that once it is out there, it is impossible to reel it back in. I was warned early on by a girlfriend that, “People will have expectations now,” and understandably they will not always be good ones. But I have always felt the need to tell people anyway. In the beginning it was because we needed help. Now it is sometimes for understanding, and at times as a warning. I am not apologizing for my daughter, as another friend insinuated. I am protecting her. And myself.

Part of this developed when she was just a baby and I had to tell anyone who would listen. This wasn’t something the school presented to us, or the doctor. I had to convince people. My daughter’s physical disabilities and delays were so obvious from the start…to me. I saw them at just two weeks old. I saw them…not the doctors. I have had to advocate ever since. And I was always self-conscious about them. My daughter is a twin, and my older son was just a baby himself, barely twenty-one months when the twins were born. We were a spectacle indeed, wheeling around in a double stroller, with my older son sometimes perched on the top like a hood ornament, blocking my view. I got a lot of, “Well, you’ve certainly got your hands full,” and “How close are they?”

As they grew, or I should say, as my boys grew and my daughter failed to nurse, failed to swallow, and dropped quickly to the low side of four pounds I got a lot of concerned and skeptical looks. I actually had people quiz me on their ages, looking at her twin brother, a full, robust, two pounds larger, round cheeked and alert, and my daughter’s alarmingly thin, scrawny body, head just slightly too small, arms and legs meek and rather slack. I could see the concern in people’s faces. Even they knew something was off balance. “They’re twins?” people would ask incredulously, not bothering to disguise the alarm in their voice. “But she is so much smaller,” they would say, as if I hadn’t noticed. This happened often. And no one seemed to pay attention to the pain in my face when I snapped that yes, they were twins. And they were different people. “But she’s so small,” they would insist. The judgement clear on their faces.

The first people I pleaded to were the doctors, who decided first that I was simply “overwhelmed,” when I told them that she screamed and cried a lot. “You have twins. There’s bound to be a lot of screaming. Ok. Then they said it might be colic. Or that I wasn’t making enough milk. Or that I wasn’t giving enough bottles. Or that I was giving too many bottles and not enough food. I had to argue, and fight, and explain even to the Doctor that condescendingly informed me that there were only two reasons why a baby doesn’t gain weight: either that her caloric output was exceeding her caloric intake or that she wasn’t receiving enough calories, period. Basically I was either starving her or making my eight month old exercise too much.

That was the final straw, but on one visit when I explained that my husband had to travel more now since the twins were born than he ever had, she looked at me skeptically over her clipboard and said, “Really?” Causing me to wonder if my husband was not traveling for work, but was secretly meeting up with a colleague in some resort love nest. It was not what a sleep deprived, nursing mother needs to have brewing in her head. It was far from helpful. When I had failed to have my twin boys haircut (he was beginning to look like a baby hillbilly) she said, “Good afternoon, girls. I mean, sir,” staring pointedly at my son’s hair. I quickly realized that if even a pediatrician was going to have judgements, than certainly everyone else would.

I had to switch pediatricians.

I even had to argue with my husband who didn’t want to accept that something was going on with my daughter, nor could he fully cope with it, having just been promoted to a higher position that required 80 percent travel. Now that I was a stay at home mom with three babies, and an estimated over two thousand a year in diapers, we desperately needed the money. He didn’t not want to hear that I wasn’t handling my end of the bargain. He couldn’t understand why I was suddenly falling apart, why I couldn’t handle anything, and why I kept insisting our daughter had autism. I think he believed that I had post-partum depression. One of his female colleagues actually sent an article to me about learning how to accept a father’s unique role in parenting. I have, for the most part, blocked out those dark days, but I wish I could remember her name, or hadn’t promptly torn up her “friendly” letter, because I would love to track her down today. (My husband has since left that company and insists he doesn’t even remember her name). They were dark times, and everyone seemed to judge, even family.

If there is any upside to the significant delays that followed it is that it became evident to everyone that I was not just a crazy, raving hormonal female. Now everyone tells me it must have been my motherly instincts, which annoys me just as much. Instinct had nothing to do with it. It was observation, experience, and hands on work. I was her primary caretaker…how could I not know and understand the details of her development?

Not every child on the spectrum presents with difficulties early on. Some develop normally physically. Some of my friend’s children didn’t present with difficulties until pre-school. Some could read at the age of two. Some were speaking in full sentences and introducing themselves to people. Some had diagnoses and instantly gained access to services. We had early intervention and private therapies, but no one could pinpoint exactly what my daughter had. That doesn’t mean it wasn’t’ there. It doesn’t mean I was wrong. People ask me, “What do the doctors say?” Which again, makes me crazy. If the doctors don’t know, they assume I must be wrong.

But I am not wrong. No one knows exactly what my daughter has. No one knows what to call it. I know, however, that when she throws a tantrum at a birthday party because she doesn’t get a pink balloon that people or going to judge me. Or when she is barreling towards the bathroom at dance class and I go ahead and try and beat people to the open door it is because she can’t hold it, not because we are inconsiderate. When she cannot do a cartwheel or a hand stand, I am going to tell the teenager working at the gymnastic center that she needs extra help. When the crafty mom at school is holding a cupcake workshop at school, I am going to tell her my daughter needs extra insistence. When my daughter pushes a friend on the playground, when I see the mom I will apologize and tell her that my daughter is working on social skills. Because people are always going to judge her. And me.

Except now they’ll have all the information. Will I tell people forever? I hope not. I hope I won’t have to. I know that soon my daughter might start asking me, and I wonder how I can justify telling other people and not telling her. I am hoping that eventually struggles will become quirky. And quirky will become unique. I’m hoping, eventually, she will just be.

For now, I tell.

 

 

 


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Am I Giving my Child a Stigma?

“If you keep saying that about your daughter, it’s going to create a stigma. And she might resent you for it,” a friend told me, after she had heard me make one of my customary jokes about my daughters “issues.” Something like, “My Crazy Daughter,” usually followed by nervous laughter meant to lighten the situation. She put a hand on my shoulder. “I hope I didn’t offend you by saying that. I just feel like it would be better for your daughter’s sake.” This friend must have seen the hurt on my face, though I had tried as best I could to smile and apologize and stammer that I knew, and that I was wrong, and I shouldn’t do it, but just couldn’t help myself.

I can see how she may have viewed these comments as highly insensitive to my daughter. I know she just couldn’t imagine uttering such negative things about one of her children. And that’s it, she can’t imagine. And she can’t understand that the offhand “crazy” comment is such a trivial, whitewash of what actually goes on during episodes with my daughter. If she could, she would understand that I am, in fact, protecting her. Even though she may have not seen the evidence, when one of my daughter’s “episodes” takes place in front of that same well-meaning friend, she will be judging me. And she will certainly not be singing my daughter’s praises.

I usually allude to her “delays” and “struggles,” with a degree of humor. Maybe it isn’t the best way. But when she is throwing herself down on the ground, yelling, “I need it, I want it, I need it, I want it,” for twenty minutes while people walk by gawking, you begin to develop coping mechanisms. Mine happens to be self-deprecation. I would appreciate the benefit of the doubt though, and that people could accept my lightness as diplomacy and not ignorance. I appreciate the pep talk, but this woman simply hasn’t seen my daughter crying hysterical and hiding underneath the table in pre-school because it was time to line up for art and she doesn’t understand where they are going—in the six month of school. Or the times she has repeatedly unclicked herself from her seatbelt on major highways because it is choking her, or thrown a sippy cup at my head while I am driving, or when she has thrown herself down in the road in front of oncoming traffic when her balloon flew away—and stayed there having a tantrum for fifteen minutes. This woman doesn’t see that my kindergartener is yet to be potty trained but lets out primal, anguish screams at the feel of pull ups, underwear, and most pants, for that matter. She wasn’t privy to my daughter throwing herself onto the ground every recess, yelling, “They are running away from me, they are running away from me,” every single day, when the kids were happily let out for recess. And she wasn’t informed that when my daughter was finally approved for occupational therapy at school, she spent the rest of the year just trying to form a circle without tearing the paper. Or that she has become so frustrated at a classmate for winning a game or knowing how to count, she has scratched them until they bleed. Some things I actually keep to myself.

Like the pain and fear I have every day that she has hurt someone or herself. That she has soiled her clothes in front of her classmates. That she spent a day feeling frightened and frustrated. That is entirely my fault. That I drank coffee when I was pregnant. That I didn’t take enough pre-natal vitamins. That maybe I wasn’t meant to be a mother. I usually try to keep that to myself.

I hold my breath. I suck down as many fears as I can. I try to keep her included. I follow all the mother’s to the playground to help her fit in, and I watch her clumsily, painfully try to coordinate her limbs and follow the movements of the other children. I listen to them laugh about overachievers and helicopter moms, and make jokes about kids that will fail kindergarten. Even though mine, is “failing kindergarten.” And sometimes, to cover her trips, and her falls, and her outbursts, and so you won’t

have to know the pain and the anger and the depth of our problems, I say, “Oh, she’s so klutzy. Or “Oh, mine gets a little crazy.”  I say it, for her sake.

 


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Please Stop Hitting…(Or Blabbering about it).

Our daughter is a sweet girl. Truly. She loves puppies and kitties. And Princess Stories (don’t hold it against her). When she is sleeping, and I stare at her still, calm face, her delicate eyelashes, her hands folded pray-like, and her slow, measured breathing, I am mystified that this is the same child that when awake can go from zero to sixty in her anger, wreaking havoc on anyone and anything that comes in her wake.

We have been desperate to rid her of these aggressive behaviors. If she doesn’t stop, I am afraid what the ramifications will be. Forget about the “Alice in Wonderland” Tea Party she has requested for her birthday, I’m worried she won’t have any friends at all. Or worse, that she won’t be able to stay in school—where she already receives special supports.

So, we recently renewed the “every fluffy, pink item at the dollar store” behavioral chart, and the very sooner had we started had she come home with, not only an unhappy face, but an “incident report.”   And this was a half day. She didn’t even make it through three and half hours before she had spit and hit a little girl in her mainstream class. Tuesday she went for a hat trick and pushed a girl who was trying to steal her seat, slapped a girl who told people about the push, and yelled at another who was also, according to my daughter, “blabbering,” about it.

It is understandable that she has a high amount of frustration and, yes, anger. She struggles with everything: fine motor, gross motor, motor planning (dyspraxia), apraxia, dyslexia, etc. etc. All of these impact her socially, as she can’t “keep up” with her peers. She does not always get those non-verbal cues necessary to make and interact with friends. She thinks kids playing tag are running away from her. She thinks that kids in the ice cream line are laughing at her, when they are just happily talking. Or she is outraged when someone gets in line first, or takes a seat she wanted to sit in.   We get a lot of notes home about the way she misinterprets things. And she does…sometimes.

Sometimes…she is interpreting it just right. Sometimes kids are just mean. Yes, she certainly has a tendency to view the world in black and white terms. She wants a seat. Someone else takes it. They’re mean. And of course, my daughter’s reactions are outrageous. Awful. And we need to stop them. We have to give her the tools to handle those situations. But usually when she is being given consequences for her heinous crimes, they are given…in black and white terms. You hit, you’re mean, please say you’re sorry. She apologizes, and the next day we are back to square one.

She hasn’t learned anything other than being wrong. And then being punished.   We know that social interactions are more complex than that childhood assertion, “She’s mean.” And sometimes, many times, the other kids are mean too.

Such as the little girl who decided to tell my daughter she wasn’t allowed to use the purple marker. Even though the purple marker was in the middle of the “free pile” and no one else was using it. My daughter, not having the language and tools to defend herself, felt picked on. And she was right.  Of course, when my child reacted with anger, the little girl went off with a friend in tow, and tattled to the teacher. Obviously, this little girl didn’t supply her part in the reaction. But she had the language skills and ability to tell the teacher. And to know what details to leave out.

For whatever reason, this little girl enjoyed pushing my daughter’s buttons. She got a little power from being the “protector of the markers.” The teacher even acknowledged this. They asked for both sides of the story, thankfully, because in the past they haven’t, and my daughter has been completely incapable of telling them. And I have seen the other girls whisper about her, or point out that the chicken scratch scribble on her paper isn’t a real “kitty,” or refuse to allow her to join their dance or their games of tag because she is too uncoordinated, too awkward, too odd.

Regardless, this time my daughter had hit and (god help us) spat at this little girl, she was the one punished, although she had been quietly coloring and behaving herself before the girl butted in. Anyone hearing the upshot of the story would say that my daughter is the bully. But, despite my daughter’s horrendous reaction, she wasn’t entirely in the wrong. We felt the need to empathize somewhat with our daughter on this point, while taking a clear stance that she would have consequences for hitting. We discussed tools for defending yourself, words to use, and adults to turn to. Great.

And then she struck again. In the social quagmire of the lunchroom. The very next day, she ended up pushing one girl and then slapping another. The lunchroom is a dreaded place for many kids, but quite difficult for mine, who is not only physically awkward, but slow to process visually, so she is unable to quickly assess a situation and put herself in an advantageous position, or physically agile enough to move around the table. And without a monitor to help her navigate this social marsh. She always ends up with the last seat. At birthday parties, in circle time, and definitely at lunch, when the other more verbally and socially adept have already established lunch plans and cliques. Our daughter is painfully simple. She sees seat near an accepting friend. Not the seats across from or in proximity. She zeros in on a sit and like a beagle on a scent she is singularly focused, and almost always someone beats her to it. And so this time, she pushed the girl who got in her way.

After she pushed the girl, another girl began to relay it to another girl, so my daughter slapped her and told her to stop “blabbering” about it. And when one of the same girls involved in the “marker incident” began chiming in, my daughter told her she was mean, and should also stop her blabbering.

I was heartbroken. Embarrassed. With each line written I felt a small piece of my resolve crumble away. She pushed someone. She slapped another. She yelled at a third. It was three strikes to my heart. How in the world would any of the girls would ever play with her again?

Yet, I felt the injustice for her. I know that she is a sad, socially awkward little girl who just wants a seat in the lunchroom. How many of us can relate to that? Any maybe the other girls should have stopped blabbering about it. She isn’t misinterpreting anything. (Well, maybe some things). But, she’s frustrated. She’s pissed. And I can’t really blame her.  Social complexities escape her, which she needs desperately to learn. But ironically, it is almost impossible not to reprimand her in a simple way. Hitting=wrong. If I don’t, I fear where she will end up. Friendless? Homeschooled? Juvie?

Sometimes, at night, I wake up in a sweat, gripped with fears that my daughter will grow up to be a violent criminal. Back in my twenties, I taught at a medium security prison, where one of the inmates had been sent to the hole for stabbing another inmate in the hand with a pencil. All for stealing his canteen candy. He was indignant in his anger. The morose absurdity still sits with me. This is my daughter’s simplistic rational. My brother stole the remote, so I hit him with it. He took my seat at the breakfast table, so I yanked him to the ground. She continually sabotages herself with her angry outbursts. I had sympathy for those inmates for their very stunted view of things. Though certainly felt better with them behind bars.

I can’t deny that there isn’t a small part of me, and perhaps many of us, that hasn’t harbored notions of a little jail-yard justice. Though I’m not going to go around stabbing people who cut me in line at Starbucks. But I’m not misinterpreting things when I’m annoyed listening to grown women stand around at the school drop off, or the sporting event, or the evilest of places, the brownie troop meeting, blabbering about other people. Sometimes I see the closed circles, and the lowered voices, and the snickering, and I want to walk by and shout, “You’re Mean.” Because, honestly, I’m with my daughter…some of them are. Of course, I fight the urge to run them over with my car. So, yes, we are definitely instituting a no hitting policy. But, for my daughter, I’m also going to move to a more complex view of the situation and also take a stand on the egregiousness of “blabbering.” I wholeheartedly agree: Blabbering = mean.

 


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Hair-Brushing Nightmares and Sensory Processing Disorder

All little girls hate having their hair-brushed, right? Honestly, my boys aren’t all that thrilled with it either. My son, with his “hockey hair,” avoids it like the plague, and with “hat-trick skills,” shoves it into a hoodie or snow hat before I can catch him in the morning. But my daughter cannot get away with this as easily. First of all, she doesn’t want to go out of the house looking like she has just played three periods of pond hockey in sweaty goalie gear…she wants to look like Rapunzel. She wants me to put waterfall braids in her hair, and intricate twists, and bows… never-mind that I barely have the skills to put a ponytail in her head without it snapping, or that while I’m doing this she lets off high pitch unmerciful screams so horrendous that I am shocked the neighbors haven’t called the police.

She has extreme sensory process disorder (or dysfunction) that mostly presents in her sense of touch. Those with children with sensory processing disorder understand far too well that the reaction to even normal, ordinary sensations is dysfunctional. So if something is uncomfortable or mildly painful to a typical child, than the child with sensory processing disorder not only reacts, but truly experiences extreme and intense pain. Having her hair brushed is agony for her. (If you’re unsure whether your child has spd or simply dislikes having their hair brushed, check out: Top 10 red flags for Sensory Processing Disorder, at sensoryprocessingmadesimple.com)

My mother told me she’d just cut it off. Like she did to mine when I was eight and she had them cut it into “the Dorothy Hamill”, for which I never truthfully forgave her.   I can’t do it. My daughter wants to grow her hair to her waist. Another friend told me that maybe I should teach her to focus on something other than outer beauty. (Obviously, that is all I am focused on), and not the serious impending health hazard the matted dreaded mess of her head will create when wildlife begin nesting in it. And by the by, if it were really up to me, I’d dread it Lisa Bonet style and be done with it. And my daughter…would be miserable.

She is different in so many ways, struggles so desperately to fit in, if having pretty hair is one superficial trivial way for her to feel good, then so be it. I am not interested in taking strong feminist social stands at this juncture. I just don’t want her to look like a homeless person.

It is a basic matter of hygiene. And to be honest, when I see her get off of the bus, her jacket disheveled, misbuttoned and hanging from her shoulders, smears of peanut butter and jelly on her face, and her hair in a crazed, tangled heap, it saddens me. It is an outward projection of the disorder that is happening inside. And let’s face it. Everyone is judging her by it. And judging me.

So what to do? We have tried all manner of detangling spray. She screams because it is making her hair wet, even when her hair is already wet. I tried kids’ organic raspberry detangling spray and she decided the cartoon picture on the bottle made her gag. Blue spray bottles are for boys. We have tried soft brushes, hard brushes, round brushes, vent brushes, and a large glittery brush with pink bristles, Elvis-like Rhinestones, and her initial on it. (This one works the best…obviously). But she stills screams like a wild banshee. Most recently, screeching the word “joust” whenever I come near her with the brush.

For what it is worth, here is the only method I have found that works provided all the right “conditions” are in place. My daughter has also decided she hates taking baths and showers because her hands and feet get “pruny.” No talk of mermaids, bubble baths, or swimming like fishies has been able to detract from this particular obsession. If you do not have this odd and annoying obsessive-compulsive issue, than you may have an easier go. If I can distract her with toys, bath crayons, or princess body wash then we are good to go for step one.

Choose the Right Pillowcase.   I remembered hearing that satin pillowcases were better for your hair, but never bothered thinking they were an expensive luxury. While it won’t rid your child of SPD, it does help relieve snarls and keep fragile hair from dehydrating. I found a satin pillow case for only $9.99 from SuperflyKids.com and it was pink with Bubblegum trim—perfect. But it comes in an entire rainbow of colors.

We HAVE to take a bath or shower in the morning. Sleeping on a wet head will always result in tangles and they are much harder to get out once she has spent the night twisting and turning against the pillow case.

Skip Shampoo if needed. Sometimes my daughter can all tolerate a minimal amount of touch and the conditioner is more important. Traditional shampoos can dry the hair out and make tangles worse, so I like to use only sulfate-free shampoos. There are many drugstore brands, but since I have curly hair myself I love a called DevaCurl. The make a “no poo” and a “low poo,” shampoo that hydrates the hair.

Use Tons of Deep Conditioner. There’s nothing that cures tangles better than a good deep conditioner. Again, anything that is sulfate free is better for curls and so it also helps tangles. Deva-curl “One Condition” is great for everyday and the deep conditioner “Heaven in Hair,” are both great. They contain zero sulfates, parabens, or silicones and smell great. If the smell doesn’t calm her, it at least calms me. They also carry a leave in and a “No-Comb” de-tangling spray. I admit, the no-comb promise pulled me in, even though I know better, but it does work pretty darn well. Truthfully, if I only have to use the detangler for the most monstrous of knots. The conditoner works that well.  It is a little on the pricey side, but well worth it. You can find them at www.mydevacurl.com

Choose the Right Brush. My daughter is rigid that it was difficult to get her to try anything other than her glittery Elvis brush, so it took convincing for me to drag another plastic pronged weapon through her head. She relented when I told her this was a special “Double Detangler,” also by Ouidad. There is a great guide to hairbrushes and a review of this brush in “The Hairbrush Manifesto,” by Zoe Foster.

Try a Blow Dryer. We blow dry her hair in front of her favorite cartoon instead of a big mirror. This may not work for those children who are sensitive to noise, but my daughter responds to the white noise it makes. It calms her and distracts her from the brushing. More importantly, it mutes her screaming so that my nerves are not set on edge.

Lastly,

If I don’t see it, it must not be there. If all else fails, I leave those matted tangles near the delicate neckline alone. I know they’re there but no one else does, so it makes me feel better. Sometimes I wait for the hairdresser to take care of those. She does far better at the hairdresser than at home. Yes, of course she does.

Wine never hurts. (For me, obviously.)   A glass of pinot noir makes the whole process go a lot easier. Or if need be just singing “Red, red wine” as loud as I can. So I can drown her out when she starts screaming, “Joust, you’re hurting me.”

Cover up. I follow my son’s lead and find something to mask anything that looks hideous with one of those tacky flowers from Claire’s Boutique.

Beauteous. Maybe not. But we have not found any animals nesting in her head, and I haven’t had to cut it. In the meantime, I am holding onto the solace that she eventually grew tired of shoving pink and purple crayons up her nose, so there is hope this battle will soon pass. Or I will bide my time for the teenage years when she rebels and shaves it into a Mohawk.