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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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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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.