myverywildchild

The chaos and mania of parenting a child on the spectrum


Leave a comment

“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.

 

 

 

 


Leave a comment

Normal, Typical, or Downright Cool?

thB36I9M6O

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.


Leave a comment

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.

 


Leave a comment

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.

 

 

 


Leave a comment

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.

 


1 Comment

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.

 


Leave a comment

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.