Why Thinking People Want to Talk About Services in the Wake of Tragedy

TRIGGER WARNINGS:  discussion of murder, abuse, PTSD, mental illness, suicide

COMMENT POLICY:  I will monitor comments on this post aggressively and will not publish any comment that attacks ANYONE, that contains unsupported statements represented as fact, engages in wild speculation, or is in any way abusive.  Thoughtful, polite, reasoned dissent is welcome and encouraged.

As some of you may know, this blog mostly is about my experiences as the parent of an autistic child.  Sometimes, I talk about autism in the broader context, but I make no claim to being an advocate for the autistic community.  I advocate for my daughter (and woe is the person who pisses me off when it comes to her), but my primary goals in writing this blog are to connect with the autism community and to find the support and education I need to be the best mom I can.  I try to pay forward what I learn by sharing my experiences in the hope that others benefit from that.  I believe that, to be the mom I hope to be, I must learn from other parents and from autistic persons.  I believe that with my whole heart.  I believe that I have to accept that I am sometimes (although unintentionally) ableist in my view of the world, so that I keep my mind open to ways in which I can change my behavior to effect change and role model change for others.  I want my blog to be a welcoming space for people who want to have a candid, intellectually honest, productive discussion about … stuff.  But, “welcoming” doesn’t always mean “comfortable.”  I do not accept the premise that autism is all rainbows and joy and special talents.  Life isn’t all those things.  So, there are times – like today – when what I want to write about is a time when autism hurts.

For me, being the parent of an autistic child is challenging on many levels, but it is not what I would describe as extreme.  In most respects, I find it quite rewarding.  Still, meeting Helene’s needs requires a lot of compromises our family had not considered making before she picked us as her world tour guides. Sometimes, the choices are insignificant in the larger scheme of things – McDonald’s and frozen pizza instead of kale and quinoa.  Sometimes, though, the choices are very, very big and very, very difficult.  For example, Helene needs about fifteen hours a week in therapy in addition to time spent at school.  To meet this need, my husband and I had to reexamine decisions we made about where and whether we worked, where we lived, and how we would balance caregiving responsibilities.  You know – all the stuff we very carefully planned before deciding to have another child.  We had to examine these life-altering questions not in succession with temporal buffers on either side but ALL AT ONCE.  We had to examine these questions within the confines of very limited choices.  That is stressful.  It is overwhelming.  It was the subject of much disagreement.  It was frustrated by our own learning curves.  It had cascading consequences on personal, professional, financial and social levels.  The difficulty was not because we railed against autism, refused to “accept” it or to “accept” our daughter.  She’s our daughter.  And, these difficulties emphatically were not something for which we blamed Helene (or anyone) – there was no blameworthy event (despite the never-ending “findings” published all over the Internet that attempt to place blame on someone for autism).  That, however, does not make the difficulties any less real, any more avoidable, any less stressful or painful.  It also is not possible to ameliorate (or effective to deny) the causal link between Helene’s autism and the way our lives changed after her diagnosis.  That is a fact, and that evolution continues as we all age and our collective needs and capabilities change.

Also a fact:  It was time and a little luck through which we found a balance.  For now.  But, I send my gratitude out into the universe everyday, because neurology seems to me a fickle, fickle thing. One day, it fires the neurons that lead to an explosion of expressive language and the next day it fires the neurons that lead to excruciating sensory pain.  In Helene’s case, what it has not lead to is physical aggression toward others.  It may not ever.  Is it because she is not neurologically wired that way?  Is it because of how we nurture her?  Is it because she has enough language and expressive communication that we almost always understand her and can meet her needs? Is it a combination of those?  I cannot say.  I know with certainty only that our family dynamic is not nearly as complex as it might be if Helene was harming herself or anyone in our home.  And, yet, I struggled to maintain my own emotional balance until we got our supports in place (and even thereafter) to help Helene on her journey.

When I say “supports,” I’m using this phrase loosely.  We are fortunate to live in a state that compels health insurance providers to cover ABA therapy so that we do not have to pay entirely out of pocket.  Of course, this doesn’t guarantee that Helene receives quality ABA therapy – believe me.  But, it’s a start.  And, we are fortunate that both my husband and I have law degrees, know where and how to find and interpret important laws to ensure Helene’s education and health care, and make us unafraid and well equipped to challenge schools and insurance companies that do not do what they’re supposed to do.  We are fortunate to have the love and support of a few close friends and family members who help us with respite, finances, and through moral support without judgment.  We are fortunate that Helene’s flavor of autism is such that we, as a family, have found ways to develop and express a strong emotional bond with each other.

But, I know quite a few parents who have a very, very different experience with their children – who do not get to balance out difficult behaviors with adorable ones, to “fix” an escalation of harmful behaviors with a cuddle or to benefit from available therapies – because their children have a severe form of autism marked by communication through physical aggression.  I know parents who live with children whose only expressive communication is to scream for hours on end; to bite, scratch, hit and kick objects and people; to pick themselves bloody and raw; to consistently lose control of their bowels; to perseverate on or continually attempt to touch a parent’s, sibling’s or stranger’s private parts.  So many of these parents lack access to resources such as 1:1 aides, respite care providers, therapists or even decent IEPs or school placements for their children. So many of these parents struggle with sleep deprivation, acute stress, acute anxiety, depression, and isolation.  So many of these parents cannot hug their children, hold their hands, comb their hair or sing them songs because sensory sensitivities make that painful for the child.  So many of these parents never hear, see or feel the words “I love you” coming from their child.

It’s an uncomfortable truth that some autism advocates do not like to discuss – the connections between aggressive / violent behavior, parental stress, frustrated or preempted emotional bonding and autism.  In fact, some advocates’ distaste for the topic is so strong and so severe, they shame parents who try to raise the issue into silence.

Which brings me to Kelli Stapleton.  In full disclosure:  I know Kelli.  I can’t say we were more than Facebook friends, but we connected through a parent-support community, and I was familiar with Kelli’s work to find services for her family and, particularly, her autistic teenaged daughter, Isabelle.  I followed Kelli with interest, because I don’t meet many parents of female autistics, and I appreciated having insight into Kelli’s experiences with Isabelle.  Kelli was in some ways addressing years still in my future.  I’m a planner-aheader.  That’s a thing.

One year ago, almost to the day, Kelli shocked many – perhaps most of all those of us who looked up to her as a tireless advocate for her daughter under some very difficult circumstances – when she tried to kill herself and Isabelle by carbon monoxide poisoning.  Isabelle fell into a coma but recovered.  Kelli suffered less serious injuries and was arrested almost immediately.  Kelli’s husband and Isabelle’s father, Matt, filed for divorce and has custody of Isabelle and the family’s two other young children.

This week, Kelli Stapleton plead guilty to a charge of first-degree child abuse.  Kelli has not yet been sentenced, but the Michigan sentencing guidelines indicate that Kelli serve anywhere between a year and the rest of her life (with the possibility of parole) in jail as the result of her guilty plea.  There are a complex set of factors the judge must consider when determining the appropriate sentence.  The judge will hear arguments from both the District Attorney and Kelli’s defense counsel, as well as consider a probation department report, to determine the sentence.  Kelli remains in jail pending sentencing.

The District Attorney originally charged Kelli with attempted first-degree murder to which Kelli entered a plea of not guilty by reason of insanity.  A psychiatrist (who spent 20 hours observing and evaluating Kelli) was prepared to testify that Kelli suffers from post-traumatic stress disorder, mood disorder and the effects of traumatic brain injury and that Kelli was legally insane at the time she committed these acts (although she was found competent to stand trial).  Kelli’s traumatic brain injury was the result of one or more assaults on Kelli by Isabelle, whose autism features aggression.  Isabelle sometimes directed her aggression at Kelli and was increasingly directing it at her younger sister.

These are the facts, as they have been reported through news outlets, and which I know from reliable sources to be accurate.  Some news outlets do not stray far from these facts.  Others report the facts in a way that emphasizes Kelli’s depression and Isabelle’s aggression, which many people interpret as making Kelli appear sympathetic.  I can’t and won’t say that is an unreasonable interpretation.  Some people interpret the expression or appearance of sympathy for Kelli as excusing or minimizing Kelli’s acts as an understandable, forgivable or condonable response to Isabelle’s behavior (or to Isabelle, in general).  I disagree with this interpretation, because I do not think my ability to look at Kelli’s situation and acknowledge or feel saddened by her desperation and irrationality in any way ratifies Kelli’s conduct as acceptable, and it does not prevent me from feeling angry at Kelli or from feeling concern, fear and heartbreak for Isabelle.  I don’t ascribe such critical thinking to the media.  I interpret the media’s emphasis as calculated only to seize upon details that generate the most controversy, the most discussion, the most interest and, thus, sell the most papers.

Whatever the media motivation, however, scattered throughout social media (which sometimes masquerades as “journalism” or “research”) is an enormous range of opinion about the blameworthiness of Kelli’s act.  Not surprisingly, a lot of the writing expresses very emotional reaction to what Kelli did.  The stronger the emotional reaction, the stronger the comments that follow – especially from those whose own emotional reaction is different.  For an example of what I’m talking about, take a look here and here.  If you are a brave soul and can suffer silently through false analogies, histrionics, and circular logic, go read the comments under The Thinking Person’s Guide to Autism’s recent post about Kelli’s plea.  I’m not linking to it, because while there is a lot of editorializing going on over there, there is not much that might be described as thoughtful.

I have strong, complex and somewhat conflicting feelings about what Kelli did.  My feelings are grounded in my experiences as the mother of an autistic daughter and a neurotypical son, as a person who struggles with depression and anxiety, as a former lawyer, as the child of a bipolar parent, as the child of an abusive parent, as a wife, as a sibling and as someone who knows Kelli (even if tangentially).  It is not possible for me to separate myself from my experiences, so they necessarily inform my feelings.  I understand, though, that this makes my feelings about Kelli’s actions unique to me.  True, some may have similar feelings.  That alignment, however, shouldn’t be mistaken for agreement.  That one person feels as I do is not the product of a meeting of minds but a simple coincidence and possibly shared experiences.  Conversely, some – perhaps many – will have a very different perception.  That shouldn’t be mistaken for disagreement.  That a person does not feel as I do proves only a difference in perception of – not quality or quantity of – experience.

This is one of the many ways in which feelings differ from opinions or conclusions drawn from evidence or facts.  Feelings are not “right” or “wrong.”  They just are.  Feelings may be stronger or weaker but not qualitatively different from a standpoint of accuracy.  Consequently, feelings can’t be negotiated or debated in a meaningful way (not that we’ll ever stop trying). You are not me; I am not you, and only we know for sure what really lives in our respective hearts.

You may believe in your heart that what Kelli did is forgivable or that she deserves some leniency.  You may believe in your heart that she can never, ever be forgiven.  Both positions are “right” inasmuch as they represent the genuine emotions of the persons expressing them.  Discussing our feelings about what Kelli did might us feel better about ourselves.  It might even be therapeutic to listeners/readers.  But, that conversation is limited in the scope of its effect:  you vent, I vent, but we don’t change anyone’s mind, because that’s not where our feelings are.  Changing minds is a critical first step to changing behavior.

So, what I want to talk about today isn’t anyone’s feelings about what Kelli did or even what the consequences for her actions should be.  I have to believe that we (as a society) feel that no parent should see murder (or suicide) as a reasonable, rational resolution of a difficult – even nightmarish – situation.  The experiences that brought us to that place will vary widely, but the experiences all lead to the same destination:  How do we keep this from happening ever again?

Of course, this is where the conversation tends to shatter into vehement disagreement.  I’ve read blog posts and articles and participated in online discussions (if being chastised, berated and yelled at can be considered a dialogue) where the opinion expressed is that discussing anything other than the complete and unqualified condemnation of a parent who tries to murder an autistic child is a form of ableism, because discussing anything else (including why the horrible tragedy highlights the continued need for better supports) “justifies” the parent’s conduct and devalues or dehumanizes the autistic person.

One thing I read over and over again is that the media’s reporting on a parent’s murder of a disabled child is biased in favor of the parent, because it is socially acceptable to view the disabled person as less than human and, therefore, less than deserving of life.  Indisputably, there are people who hold a negative view of disabled persons, particularly autistics.  How else can one explain something like this or this?   Statistically, this bears itself out.  Developmentally disabled persons are 4 to 10 times more likely to be crime victims than are non-disabled persons.  (Sobsey, D., D. Wells, R. Lucardie, and S. Mansell. 1995. Violence and Disability: An Annotated Bibliography. Baltimore, MD. Brookes Publishing.)  This is a horrific statistic.  The treatment of disabled persons as less than human, as less deserving of a life free of cruelty, shame, judgment or bullying, or as less worthy of love, kindness and friendship is intolerable.  Any action that changes the idea that mistreatment of another human being “okay” is a worthwhile endeavor.  So, I understand the appeal of the idea that narrowing the dialogue following the abuse or murder of an autistic person to condemning the behavior of the abuser/murder will get across a broader message that we, as a society, do not accept it, condone it, forgive it or excuse it.

But, the most ardent proponents of this position are swayed by the false charms of its symmetry.  Narrowing the conversation might challenge societal perception of the moral or ethical culpability of the parent (although no one seems to be able to point to any empirical evidence of this), but that does not reach the ultimate goal, which is to change the public’s perception of the value of the life of a disabled person.  Condemnation is reactive, not proactive.  Condemning the parent is too little too late and focuses only on a result not a cause.  Communicating a message that life is valued is done through actions that proactively preserve that life.

More than 50% of all cases of abuse of disabled persons are perpetrated by family members or peers with disabilities. Disability professionals (i.e., paid or unpaid caregivers, doctors, and nurses) are generally believed responsible for the other half. (Sobsey, D. and T. Doe. 1991. “Patterns of sexual abuse and assault.” Journal of Sexuality and Disability, 9(3): 243259.)  In other words, disabled persons face the greatest risk of abuse not at the hands of broader society but at the hands of the people with whom they spend the most time and have the closest relationships.

According to a report by the World Health Organization on prevention of child abuse and neglect:

A number of personality and behavioral characteristics have been linked, in many studies, to child abuse and neglect. Parents more likely to abuse their children physically tend to have low self-esteem, poor control of their impulses, mental health problems, and to display antisocial behavior [Citation omitted].  … Many of these characteristics compromise parenting and are associated with disrupted social relationships, an inability to cope with stress and difficulty in reaching social support systems [Citation omitted].  Abusive parents may also be uninformed and have unrealistic expectations about child development [Citations omitted].

The Journal of American Academy of Pediatrics notes:

Several studies reported increased psychological distress, including depression, anxiety, and components of stress, such as decreased family cohesion and increased somatic complaints and burnout, among parents of children with autism and challenging behaviors.”   – Pediatrics Vol. 119 No. Supplement 1 February 1, 2007. pp. S114 -S121. Journal of American Academy of Pediatrics

In this article from Disability Scoop:

Overall, researchers found that families dealing with aggressive behavior struggled with social isolation, concerns about the safety of people and property, lack of respite care and limited professional supports as well as the added expense of repairs and home modifications. What’s more, the families were concerned about being able to find alternate housing for their child with autism as they aged, according to the study published online this month in the journal Focus on Autism and Other Developmental Disabilities.

Though the study was small, researchers behind the report emphasized that little has been done to understand the daily experiences of families coping with autism and aggression. Their findings suggest that there’s far too little support for individuals with aggressive tendencies and those affected by them.

Parents described an “unbearable” level of exhaustion, with at least one mother comparing her situation to being in “jail for life.”

While generally speaking families were happy with the care their child received for core symptoms of autism, most said professionals offered only limited knowledge and assistance for dealing with aggression either through medication or behavior supports. One family was actually kicked out of a home-based program for individuals with autism because of the boy’s aggression, with officials concluding that the environment was not “safe or productive.”

Let’s rephrase this:

Parents with low self-esteem, poor impulse control and mental health problems experience compromised parenting, disrupted social relationships and an inability to cope with stress or reach social support systems and, as a consequence, are more likely to physically abuse their children.  Parents of children with autism and challenging behaviors are increasingly likely to experience the factors that elevate the chances of child abuse.

If, after a parent attempts to murder or murders her autistic child, the only conversation is about condemning or vilifying the parent, how will that conversation impact the population most likely to physically abuse autistic persons?  The population already suffers from low self-esteem, poor impulse control and mental health issues, so how does shaming someone who might see herself in Kelli Stapleton, improve the at-risk parent’s self-esteem, impulse control, mental health, disrupted social relationships, ability to cope with stress or access social support systems?  The answer is:  it does not.  Rather than mitigating any of the factors that increase the likelihood of abuse, it exacerbates them.

As a general rule, parents who feel good about themselves, who have sound support systems, and who are not experiencing constant, prolonged stress refrain from abusing their children not our of fear of society’s judgment or criminal punishment but because they would perceive the abuse as repugnant to their feelings of affection and responsibility toward their children.  When a parent reaches the point at which those feelings of affection and responsibility morph into the twisted idea that ending a child’s life seems like a plausible or – heaven forbid – loving option, the parent is unquestionably emotionally – and perhaps spiritually – broken.  Condemning a broken person does not stop the broken person from an irrational act nor does it stop another from breaking any more than telling a depressed person to “snap out of it and smile” or a paralyzed person to “just get up and walk” changes their mental or physical states.

What shaming does do is create fear, and fear is certainly a powerful deterrent.  But, what the parent experiencing suicidal or homicidal ideation fears isn’t the punishment that follows her acts, especially if she reasons she won’t be around for punishment or that the punishment will be “worth it” if she’s “saving” her child from pain.  What she fears is admitting that she’s broken; admitting that she thinks murder is a plausible solution to pain.  Why is she afraid?  Because somewhere in her rational mind she realizes the import of what she’s going to do.  Because she’s seen the zero-compassion-policy movie, and the ending is more frightening to her than the one she’s considering.  Because there are parents who are so unbelievably challenged, frightened, isolated, conflicted, depressed and irrational that jail and death are convincingly better options than living.

The way we convince society that the lives of autistic persons are worth living is by creating spaces in which autistic persons can experience a quality life.  To do that, we must enable the caregivers of autistic people to create those spaces by developing and maintaining effective and accessible resources, such as education, respite, housing, employment, psychological and behavioral therapies, medical care and legal assistance.  I want to emphasize effective and accessible.  It is not enough to say that a parent in distress can “call 911” or a hotline or to remind a parent in acute crisis that going to jail is “worse” than what she’s experiencing right now.  It is not enough to say that a family has a 1:1 aide, when what that aide if legally allowed to do is very, very little.  Those are not resources, especially when hospitals are denying beds to patients, first-responders are ill-trained and ill-equipped to respond to autistic aggression (and see here and here and here), and emergency services are short-term solutions (at best).

If we want to change the story about autism from one where parents or caregivers abuse or murder autistics in their care, where autistics are arrested, beaten or killed by first responders or where autistics are refused treatment by hospital and doctors, then we have to change the setting in which the story takes place.   

To value an autistic person’s life is to protect it.  To protect that life is to take the steps necessary to prevent that life from being seen as valueless, burdensome or tragic.  By creating spaces in which autistics and caregivers are educated, employed, therapeutically and emotionally supported, we decrease exhaustion, stress, isolation and hopelessness so we effectively mitigate the factors that underlie abuse.  By creating spaces for caregivers and autistic persons that are safe, loving, nurturing and supportive environments, we do indeed change the story’s setting.

To refuse to have the conversation – at any time – about a need for prevention of abuse through services and supports does not protect autistics; it is to be complicit in the continued marginalization and isolation of autistics and those who provide their care.

Dedicated to the entire Stapleton Family, whose suffering need not be in vain and who I hope now find themselves on a path toward healing.

 

 

 

 

 

Spectrum Parenting Pitfalls: Wishing for “Normal”

Today, my friend @jillsmo of Yeah. Good Times. wrote a brave and thoughtful blog post that resonated with me.  I started to leave a comment on it, but my comment got too long.  (I know, right?)  So, I left her a quick note and came over here to say the rest.

*DEEP BREATH*

I sometimes wish Helene were “normal.”

*EXHALE*

When I wish for “normal,” what I mean is that I wish Helene could have the same sense of humor, the same loving disposition, the same sweet smile, the same strong will that she now has right now — without speech delays, motor skills deficits, sensitivity to noise and stimuli, obliviousness to or irritation by her peers, tremendous anxiety attacks that consume her,  a paradoxical need to hurt herself again (and again) after she feels pain, or the rollercoaster sleep schedule.

When I wish for “normal,” it is a short-hand way of saying I would gladly trade Helene’s doctor’s appointments, therapies, “social skills” classes, IEP teams, agency services, and rigid daily life for soccer games, dance classes, music lessons, the ability to travel and the freedom not only to have, but to enjoy, spontaneity and flexibility.

And, yes, I want these things as much for me and for our family as I do for Helene.  Why wouldn’t or – more to the point – shouldn’t I?

But, wishing for “normal” does not mean I wish Helene wasn’t autistic.  If someone handed me a pill tomorrow that would “cure” Helene’s autism, I would be simultaneously terrified to give it to her and to not.  How do I not magically remove her challenges if it is within my power to do so?  But, what if – what if – giving her fluent speech, gracious movement, regular sleep, a neurotypical response to pain, peer-aged social engagement or emotional stability, I simultaneously removed everything about Helene that makes up her personality – the very essence of what I love so much about her it hurts?

Why don’t I utter a desire for “normal” aloud?  Why do I get upset when other people say to me, “Don’t you wish your daughter was ‘normal’?”

When I don’t say it, it’s out of fear and guilt.

Baggage

I have two fears.  First, I am afraid for myself.  Second, I am afraid for the parents and children whose lives are touched by ASD.  I am afraid that if I express this thought out loud, people in the ASD community, who have very strong opinions about what is “right” or “wrong” when living as or with a person on the spectrum, will attack me.  I already feel so excluded and marginalized – on my own behalf and on my daughter’s – I don’t think I can take being rejected by the only community in which my daughter and I belong – objectively speaking, anyway.  Second, I am afraid that if I express this thought out loud, I inadvertently send the wrong message to parents and children touched by ASD.  My wish for “normal” is not a permanent state of mind for me.  It’s not what I desire when I throw a penny in a fountain or blow out birthday candles or even when I read articles on developments in treatment of ASD.  It is a recurring but fleeting thought that crosses my mind particularly when Helene is frustrated or hurt (physically or emotionally) by the challenges that life brings her.  It is the manifestation of desire that I think most parents have in response to the difficulties confronting their children – I want to make it better / easier / safer.

Now, the guilt.  My introduction to the autism spectrum community came with a barrage of messages about acceptance and advocacy:  accept your child for who she is, and never stop pushing for her acceptance in and by broader society.  These are good, important messages, because much of what I want for Helene will come from others understanding, accepting and integrating Helene into all aspects of society.  I believe that these are my responsibilities as part of parenting a child on the spectrum.  But, what I didn’t hear (or hear enough) about was how to address my own feelings about being a parent under these circumstances.  Intuitively, I know that I am entitled to have feelings about this – both positive and negative.  Being a parent is not a walk in the park under even the most idyllic of circumstances, because it inevitably involves the desire – or even the need – to control another human being.  Still, the message I heard more often than not was that anything other than total and complete acceptance of my role and my child was failure – as a mom, as an advocate, as a human.  So, when I find my mind wandering toward the forbidden wish that my daughter not face so many challenges and obstacles, I immediately feel shame.  I feel as though I’ve betrayed her.  And, I feel as though I betray the broader ASD community.

But, fear and guilt are not positive, healthy emotions.  Walking around with that darkness does not make me a better parent for Helene – or Nate.  It doesn’t make me a better member of this family.  Quite the opposite, it makes me less effective, less convincing, and less able, because fear and guilt diminish the psychic energy necessary to be the advocate I do need to be; those feelings undermine my ability to create a positive space for Helene both within and outside the ASD community.

In fact, when I read Jill’s blog post, I burst into tears, because I felt relieved.  I felt redeemed.  I felt successful.

Yessssssss.

Why?  Because, I happen to think Jill is a wonderful mother.  I think she is an outstanding advocate not only people on the spectrum but for their parents and caregivers.  And, because I respect her, hearing her say that she sometimes harbors the same feelings made the weight of all my bottled-up guilt and fear so much lighter.  It made me believe that I am not alone.  It made me believe that I’m not a bad parent.  Do you know how empowering that is?  Just think about that for a minute.  Whether you are NT or on the spectrum, what motivates you more toward success:  fear or positive reinforcement?  If you are on the spectrum, did you find your relationship with your parent(s) more productive when they were anxious and filled with fear and worry or when they were able to just be with you?

So, what’s with my double standard?  Why do I get upset when people ask me whether I wish Helene were ‘normal’?  The most basic explanation is that I know what I mean by ‘normal’; I don’t know what you mean.  That question is so very loaded by the vagueness of “normal” that I cannot possibly answer with a simple “yes” or “no.”

Hopelessly vague and ambiguous

That makes me defensive, especially when talking to someone I don’t know.  I feel like I have to explain and justify my daughter’s existence and my part in it.  If you ask me this over a cup of coffee, when I’ve invited you to talk to me about raising children, I will feel comfortable enough to tell you the answer is “yes” (if you mean to ask me whether I wish life brought Helene more rewards than challenges); the answer is “no” if you mean to ask whether I wish Helene was not autistic or whether I am ashamed of, embarrassed by or angry at my daughter for being anything that she is.  If you ask me this while she’s in the middle of a meltdown caused by too much sensory input or on her 55th rendition of “Itsy Bitsy Spider” to stave off the anxiety, I’m not going to take the time to make sense of ambiguities, I’m going immediately on the defensive, I will assume you mean “don’t you wish your life didn’t suck so bad,” and I will unleash my inner advocacy-mom-ninja. No, my life doesn’t suck, and neither does Helene’s, just because sometimes our lives are more frustrating than others’.

I AM A BESERKER NINJA! FEAR ME!

Remember me?  Yeah.

Which brings me back around to fear and guilt.  Do you know when people ask me the “normal” question the most often?  It’s not over coffee.  It’s not a question asked out of sympathy, empathy or even good will.  It’s asked more like an accusation, making me simultaneously wish that you perceived my daughter as “normal” and feel shame that I have, in fact, wished for “normal.”  It’s a horrible, confusing, depressing feeling, and instead of being able to reflect and answer that question in a way that would really advocate for Helene, I just lash out at the inquirer, which kind of proves his/her intended point.

So, I don’t say it.  You don’t say it.  It doesn’t get discussed.  Until people like Jill are brave enough to put it out there — to risk the disappointment and anger of vocal members of the community, to risk being misunderstood – for the sake of reaching the parents out there who need to talk about it so that we do a better job of taking care of ourselves and parenting our beautiful kids.

Thank you, Jill, for making me brave enough to post this.  Thank you to everyone brave enough to share in response.

Beserker Ninja: An Illustrated Guide to My (Lack of) Autism Parenting Skills

Crap.

I’ve been in a mood since last Wednesday after I left my therapist’s office. It looks like this:

No Umbrella ... ella ... ella ... ella

Why do I never have a fucking umbrella when I need one. Rhhhhhhiiiiaaaannnaaaa!!!

I’ve started – I don’t know – three different blog posts? But, I haven’t been able to finish any of them, because while the posts are about topics that matter to me, they aren’t really what’s been on my mind. I showed at least enough restraint not to delete them, because they’re probably worth finishing when I’m not such a Crabby Crabberson.

Little Black Cloud Syndrome happens to me in cycles. I hit what seems a sudden and unpredictable week that feels wholly unbearable. My bed feels too comfortable to exit, but not comfortable enough in which to sleep. My clothes feel like a straitjacket. Everyone’s voice is too loud, and people are annoying because – I don’t know – they breathe. The sun feels like someone is stabbing my retinas with a thousand needles. I’m starving, but nothing seems appetizing or tastes good. I’m tired but my body will not hold still. Concentrating on anything other than menial, repetitive tasks is OUT of the question. I just want to hide in my room with my laptop and a book. If Helene will “hide” with me – and she often will – all the better. (Except for the iPad volume control issue. Apple, if you’re listening, could we get on that please? Some kind of parental lock for the volume would be bananas amazing. Thanks.)

The last time Little Black Cloud Syndrome hit me, I knew for sure this wasn’t a PMS-y, hormonal thing. It was serious, and I needed to call my doctor.

(Aside: I have one of those doctors who thinks everything that’s wrong with me is stress or hormone related. For example,

Doctor: Well, yes, I see that you’ve been bitten by a rattlesnake. It probably sensed your stress. Let me refer you to Mental Health.

Me: Uh, I’m no doctor, but I think I actually need like an injection or something that’s the opposite of deadly poisonous venom?

Doctor: You’re right. You’re not a doctor. Here’s the number for Mental Health.

Or,

Doctor: This x-ray shows you’ve broken your hand. I’ll send you over to casting, but then you should probably have your thyroid tested.

Me: I broke my hand in a car accident, Dr. O. The other driver hit me. I was stopped.

Doctor: Well, you were probably gripping the steering wheel too tightly due to stress caused by hormonal imbalance.

Me: Yeah, there was “stress!” It was the stress of seeing the other guy coming at me in the rearview mirror at 50 miles per hour and having nowhere to go. I mean, call my ‘crazy,’ but I think that’s a pretty normal non-thyroid-y reaction to the circumstances.

Doctor: Mental illness is not a joking matter. Please take this order to the lab, Ms. A.

Me: That’s Professor A to you, Doctor O. Or, if you prefer, Counselor as in legal counselor. Not the touchy-feely shit you’re sending me down the hall for. FYI.

So, you can imagine the sick, I-told-you-so satisfaction he got out of me finally letting him refer me to Mental Health. He pointed at me with a big-ass grin on his face, dancing around the room, going “Uh-huh! That’s right! I’m the doctor! I’m the doctor! I’m the doctor!,” spiked his stethoscope and did a Tiger Woods-esque arm pump. Or maybe just the corner of his mouth curled up in the slightest of smug and self-satisfied smirks. Whatevs.

The day was moving along. I was properly caffeinated. I’d been adequately fed. As I exited the parking lot of a shopping center, however, my mood ring went from blue to black in less than the lifespan of an ice cube on hot asphalt in Georgia in the middle of July.

I know it is difficult to imagine, but my description of the relative locations of the parties involved would actually be worse than my drawing of a diagram. So, I’m going to draw a diagram. Now is not the time for complaining. First, you haven’t even seen it yet. Second, do you really want a beserker-ninja beat down?

I AM A BESERKER NINJA!  FEAR ME!

Yeah. I thought not.

Cool. So, here’s the diagram:

Scene Where Shit Was Lost (a/k/a Mall Parking Lot)

Okay. I’m driving along main artery of the parking lot. (Orangish-square with the “1” in it, above.) Bad Driver Lady (Orangish-yellow square clearly about to t-bone my car) runs her stop sign but manages to hit the brakes before she hits me. It’s cool. I’m not perfect behind the wheel by any means. (It’s true. This one time (not at band camp), a parking column actually jumped right into my car. It was some crazy shit, man. Did like $5,000 in damage. (And to this day, I wish I had an audio recording of my conversation with the GEICO adjuster.)) Any-who, I was just gonna let her roll on.

But.

BUT!

Bad Driver Lady flips me her middle finger.

OH. NO. YOU. DIDN’T.

(For my readers from another land, this is the Charades equivalent of “Go Fuck Yourself.” It is sometimes called “Flipping the bird,” which has nothing to do with flipping or birds, so I cannot even begin to explain how that little colloquialism was born. Apparently, someone else figured it out, though, so here you go. I don’t know. Something to do with bows and arrows. It sounds a little too Monty Python-ish to me. Not necessarily a bad thing, mind you. But…

http://www.etsy.com/listing/62682834/garden-gnome-flipping-the-bird-concrete

Like this, but I’m pretty sure she wasn’t winking – twitching maybe – but not winking.

Worse, I could also see her mouth moving around some words that probably everyone is better off for me not having actually heard. The expression on her mean-mug face said all I really needed to know.

Then, I heard something snap. It maybe was the tendons in my ankle ripping under the force I used to hit the brakes on my car? But the likelier culprit is my mind.

I threw the car in park, flung off my seat belt, and before I really knew what I was doing, no plan whatsoever, I was outside my car about four feet from Bad Driver Lady’s ridiculous SUV. (This surprises you?)

Grrrrrrrrr!

Me: Hey! Let me ask you something. Are you illiterate or just a really bad fucking driver? (Gesturing to the large white letters painted on the ground. See the spectacular diagram above.) S. T. O. P. For Christ’s sake, even my four-year old can read that!

Bad Driver Lady: (With a lingering Valley Girl accent, which means she’s likely from Southern California, where driving is a whole other level of Atari.) Whatever. You totally saw me coming and sped up. You know you did. And you don’t have to get out of your car, ’cause I can get out of my car, too.

Me: Sure, get out of your car. Spare the rest of us your shitty driving. Maybe we can stand here and chat about how stop signs work and why you probably shouldn’t wave at people with your middle finger.

Bad Driver Lady: I can totally get out of my car, too. I can!

At this point, some semblance of sanity returned to replace the adrenaline rushing through my body. I think the flow of adrenaline was stemmed by the satisfaction of calling Bad Driver Lady “illiterate” despite quickly realizing Bad Driver Lady had no fucking idea what “illiterate” meant. The recaptured sanity also made my brain finally register the presence of a large German Shepard in the backseat of Bad Driver Lady’s car, which my eyes had seen but my mind had not really considered as a variable in any of the possible outcomes of this little tete-a-tete. Plus, she was really leaving me no place to go other than: “Get out here so I can kick your ass,” or “I know you are but what am I?” I believe this is what’s known as an “impasse.”

So, I got back in my car and drove away. In the direction opposite my house, of course, because things are now starting to occur to me that were nowhere to be found a mere 60 seconds prior. What if this was the mother of one of the kids’ friends? What if I end up in line behind her at the coffee place. Holy Angels and Target Gift Cards, what if she works for the district and is at my kid’s next IEP meeting!?!? This is not a big town.

Moments later I pulled over — in all places, the parking lot of my high school — and broke down in tears.

Because – yes, right now it’s a funny story – but it might not have been. What the holy hell was I thinking? Stupid question. Obviously, I wasn’t thinking. And THAT is the problem. Every now and then I feel like I am losing control of my brain, which freaks me the hell out, because besides some pretty nice feet, my brain is my BEST asset. (I do have really nice feet, though. Organ pipe toes and everything. Eddie Murphy would approve.)

Look. I want to make something very clear before anyone gets an itchy 911 finger. I had NO — I repeat NO — intention of actually starting some kind of physical confrontation with Bad Driver Lady. I’m pretty sure the only human being I’ve ever hit in anger is my sister. (But, she started it.) I confronted Bad Driver Lady because I was so overcome with the urge to defend myself — to prove that it was not I who should get fucked in the scenario.

The rational part of my brain fully comprehends that this is unnecessary and – frankly – impossible. The facts are what they are, and Bad Driver Lady will ignore them the same way she ignored the stop sign. I can neither fix nor be responsible for stupid.

Also, so what? I don’t know her. I don’t want to know her. What the hell does it matter that I’m “right?” Why – despite that I am a grown woman, the mother of two children (who I like to think are better off with me), a wife, a lawyer, a professor – does the rational side of my brain lose control to the emotional side like that?

I would not describe myself as some road-raging lunatic who confronts people in parking lots. When kids at school would all crowd around two people in a fight, I ran away. I couldn’t stand to see real-life violence. Except, there I was, without a moment’s hesitation — without a second of thought about the possible consequences until I was already knee-deep in the proverbial shit — acting like a road-raging lunatic in a parking lot.

What if Bad Driver Lady did get out of the car? What if she hit me? What if she’d had a gun? None of these were wholly unrealistic possibilities. These realizations and my embarrassment at how I behaved are what triggered the tears as I sat in front of the building that was so ridiculously symbolic I kept waiting for Simple Minds to come on the radio and Justin Henry to come around the corner carrying a birthday cake.

Why am I confessing this? Because I know the cause, but not the remedy. Because I need help.

Every day, my morning starts with a beautiful, now-five-year-old face staring into my sleeping, mascara-smeared, slightly wrinkled eyes. After we stumble to the bathroom and use the potty, we get back into bed. I hold my breath, because I know it’s coming.

Mama. No school today.

Except that it’s Monday. Or Tuesday. Or Wednesday. Or Thursday. Or Friday. And there is school.

I don’t answer. I get up, smear a pea-sized amount of toothpaste on a Cinderella toothbrush, and start singing. When we’re done:

Mama? No school today?

I don’t answer and slip down the hall to get a clean outfit. As soon as I reappear in my bedroom, the wild rumpus begins.

No, Mama! No school! No school! I want covers! I want to go to bed! I don’t like school! Please, Mama! No shirt! No pants! I don’t like it! Get off! Get off of me! Please! I want to go to bed! NO! NO! NO! NO! NO!

It is usually somewhere around 8:15 to 8:30 a.m. when this starts. It continues through getting dressed, trying to get breakfast down, fighting about putting shoes on, kicking and screaming to the car, singing 400 verses of Itsy Bitsy Spider from the driveway at home to the parking lot at school, sitting in the office to wait for a classroom assistant to retrieve Helene, and matching her tearful and fearful goodbye with an artificially cheery, “Have a GREAT day!”. The time is now 10:17 a.m.

All morning, through the crying, begging, pleading, hiding, escape attempts, hitting, kicking, thrashing, screaming, I have to maintain a calm, even voice. (Imagine Dora the Explorer on speed and speaking in a voice about one octave lower than a dog whistle before reading the next quotes.)

Helene is mad. But, it’s time for shoes! Let’s put on our shoes! 🙂

Helene doesn’t like school. That’s too bad, but we’re going anyway! 🙂

By the time I leave campus to plod back to my car, my nerves are so frayed – my senses are so overloaded – my spirit is so broken, I can barely stand to be around myself let alone anyone else. I have about three hours to collect myself AND get some work done (you know, so that we can do little things – like pay the mortgage) before Helene gets home from school. There will be a short reprieve and some snuggling until 3:00 p.m., which brings the commencement of the witching hour, ripe with meltdowns over food, television shows, iPads, falls from the sofa, snacks — you name it. Each meltdown is met with my same psychotically artificially calm voice the ABA therapists are so convinced will redirect or “extinguish” unwanted behaviors.

I imagine that now you may have an inkling why Bad Driver Lady got a full-frontal of my beserker-ninja personality. If it’s still unclear, drop a roll of Mentos candies into a two-litre bottle of carbonated soda, put the lid back on, and shake vigorously.

Ping!

That about covers it.

So, my parents of spectrum kids or my adult followers who are on the spectrum: What do you do to check yourself before your wreck yourself? How do you let it out in an appropriate way as opposed to calling people out in the mall parking lot?

My therapist made me go I finally went to the Mental Health department and am now taking anti-anxiety and anti-depressant meds. I started running again. Both of these things are very helpful, but they aren’t enough.

Is it the behavioral and emotional meltdowns that are stressful? I know that’s true for Helene. When she has a really big loss of control, it is usually followed by a good long nap.

Or is the real stress (for me anyway) in suppressing my natural responses to Helene’s behavioral and emotional meltdowns?

Does the answer to that even matter? I’m not being facetious; I truly don’t know, and I would be thrilled to hear any advice you’re willing to share.

Women: Will Someone PLEASE Start Asking the RIGHT Questions? (HINT: “Are You Mom Enough?” Isn’t One of Them.)

It was not my intention, when I started this blog, to get into political issues. I mean for this blog to be something of a place of respite – to maybe even provide some comedic relief. (Yes, I know that requires being funny, Snarky, I mean for ME, and I think I’m funny, dammit.)

But, sometimes stuff happens about which I just cannot stay quiet. (This probably explains why I have a blog.)

Believe me, I tried. First, the whole Hilary Rosen / Ann Romney thing blew up. As I read or listened to the media coverage, I got more and more angry, because – listen – I’ve been on both sides of that fence. The more it went on, the more I wanted to say something. I was horribly afraid, though, it would come out wrong. Then, the TIME magazine cover happened. (And, I am purposely not linking to it, because I’m mad at TIME, and I feel like being all petty about it. Plus, you know what it is anyway.) But, the icing on the cake was this crap from TODAY about how depressed stay-at-home-moms are compared to other moms.

ENOUGH!

I’ve been a work-out-of-the-home mom, I’ve been a stay-at-home-mom, and I’ve been a work-at-home-mom. What do all these experiences have in common? No matter what, I’m always a mom. Whether I dress up in Armani suits and Manolo Blaniks or yoga pants and a t-shirt decorated with strained peas and ketchup smears, I am a mom. Whether I am in dancing in the kids’ playroom to Laurie Berkner or presenting oral argument to the United States Court of Appeals for the Ninth Circuit, I am a mom. Whether I carpool to a play date or to the office, I am a mom. Whether I pull an all-nighter nursing a sick child or finishing a client’s project, I am a mom.

Guess what else? Just like I sometimes really do not like my professional gig, sometimes the mom gig is the suck, too. Dropping my kids at daycare was often horribly gut-wrenching but sometimes blissfully freeing. Finger painting, going to the park and whipping up recipes in the kitchen is often maddeningly fun but sometimes … just maddening. Going to the office, pouring a cup of coffee, closing the door and listening to anything not related to Nickelodeon, Disney, Sprout or Cartoon Network was sometimes nothing short of orgasmic. Taking a “mental health” day to drive to the beach with the kids, singing “Found a Peanut” at the top of our lungs is marvelous, but so is sending them to school or day care anyway so that I can read a book, watch an uninterrupted TV show or – Heaven forbid – have marital relations with my husband. (Or, you know, just a hot meal of grown-up food we can eat in relative peace.) Also, can we just be real for minute? Does anyone really like cleaning up poop, cutting gum out of hair, scrubbing crayon off the walls or driving around in a car that smells like a locker room and sour milk?

But, here’s the most important thing I want — no, I NEED — you to know. I absolutely, indisputably, beyond any shadow of doubt and without an iota of reservation LOVE my children. Every second of every minute of every day of every week of every month of every year of every decade of every century and until the end of time. And, you can’t tell me I don’t, whether you are cheering about or horrified by what I just wrote above.

You know what else? I don’t doubt you love your child/ren either. Even if you don’t agree with a word that comes out of my potty mouth.

Because, hell yes I am mom “enough.” And so are YOU. Seriously, what the fuck does “Are you mom enough?” even mean? That’s like asking a woman if she’s a “little bit” pregnant. As a teacher and a parent, I often say there are no stupid questions, but congratulations TIME — you finally found one. Way to dig up that nugget, Woodward and Bernstein. (And, for future reference, NEVER ask a woman if she’s pregnant unless she’s spread eagle on a delivery table screaming for an epidural. You WILL thank me for this someday.)

Listen, this chain of recent “war on women” bullshit events wasn’t an accident. Oh, no. When journalists, politicians, religious leaders and ESPECIALLY other women ask accusatory, I’ll-meet-you-at-the-bike-racks-after-school questions via screaming mass media headline, the asker is purposefully playing on a mother’s most exposed and raw emotion: fear of failure. Every mother is susceptible to this kind of emotional terrorism, because kids don’t come with instructions – no weird IKEA-like drawings, no diagrams, no user’s manuals, no troubleshooting guides. So, we rely on – among other things – advice from people or sources we trust. You know, like political leaders, priests, pastors, rabbis, or – say – reputable (ahem) journalistic publications.

Aaaaaaannnd, there you have it.

Well, chew on these facts for a minute:

  • As of 2010, 50.8 percent of the United States’ population is female. Yes, you read that right. Better still, the overwhelming majority of that female population is 18 or older (e.g., eligible to vote).
  • The demand for workers with a postsecondary education (and especially high literacy and math proficiency) outpaces the supply of such workers.
  • Between 1998 and 2009, women were awarded more post-secondary degrees of EVERY type – from Associate’s degrees to doctoral degrees. And this is true even when looking at the data for different racial/ethnic groups!

Now, think about what this means:

  • By sheer power of numbers alone, WOMEN can determine the outcome of almost any election.
  • We cannot afford to exclude anyone from the workforce who is educated and willing to work, or the United States will not be a competitive player on the global economic, technological, scientific or medical stage.
  • There will be more women than men qualified to enter this future workforce.
  • Unless men start lining up to swap their penises for uteruses and vaginas, women are also the most qualified for bearing and birthing babies.

What’s my point? We (as in the greater “we” not just the random few lovely people who read my rants) MUST find a way to make motherhood and professional careers co-exist. AND WE CAN! Fathom the power women could harness in the political and economic arenas if we would stop diluting our own strength. Imagine the force for social, economic, structural and pedagogical change we would be if we stopped the myopic focus on changing each other or placing blame at each other’s feet.

Because, guess what ladies. Your government officials have thought about this (see, e.g., current raging debates above). Your religious leaders have thought about this. (Ahem – Gospel of Mary – Ahem.) And the vision of women as a united force was enough of a nightmare that a solution was quickly devised: provoke gender in-fighting!

Has any group been more susceptible to the cannibalism of its political/social/religious/economic clout than women? I took a semester-long class in college about Black-on-Black racism, and the room was tremendously less hostile than the “Survey of Women’s Issues” class I took, where someone had the “audicity” to speak up in favor of staying at home. And I was in San Francisco, one of the more “liberal” cities you might find.

Mothers are the perfect catalysts for division of our gender because of our peculiar vulnerability to the pressures of our peers. Having a baby? You better not make my job more difficult or cost my business any money! Not having a baby? But, that’s what you’re SUPPOSED to do! Having an abortion? You are going to Hell! Having a baby you can’t afford? Leech! Going back to work after having a baby? How heartless of you to leave your children to be raised by someone else! Staying at home to raise your children? How dare you set back the progress of the “women’s” movement! Breast feeding? Not in my store/restaurant/airport/park you don’t! Not breast feeding? Selfish and ignorant! Vaccinating? You are dooming your baby to a life of disease and defect! Not vaccinating? Irresponsible! Cloth diapers? Bottles? Binkies? Blankets? Toilet training? Co-sleeping? Television? Is there anything we women can’t find to disagree upon – especially when it comes to raising children?

Look, I’m not saying that women should just bounce giddily along, singing Kum-Ba-Ya on the way to the ballot box. (But, hey, I’m in if you don’t mind the fact that I couldn’t carry a tune if it had a handle on it.) Beyond our commonality of gender, there is an amazing range of things we don’t have in common, and no one should advocate to change that. Instead, let’s just start talking to one another and supporting one another, or NO ONE is going to advance political, legislative, religious, economic or social change agendas that affect what matters most to us as the MAJORITY of citizens in this country. If we want equal rights, we damn well better start by treating each other as equals.

So, please, no more blowing up Facebook timelines, Twitter feeds, Google circle-thingys, MySpace pages (is that even a thing anymore?), email accounts, newspapers, talk shows, daytime television, political debates, sermons, or What to Expect When You’re Expecting books with stupid questions about whether we’re women enough, professional enough, mom enough, sexual enough, married enough, single enough, liberal enough, conservative enough or any of the other myriad ways we can tear each other down. Instead, let’s just stop taking no for an answer. Let’s stop taking the bait. Let’s find ways to unite around our differences and use them to our advantage instead of letting the minority control what we get paid, whether or when we work, what we do with our bodies, and what we do with our minds. Let’s think about our children — our daughters AND sons — and whether we want to leave them a legacy of anger and “war” or of progress and equality.

Let’s start asking the right questions before someone needs a time out.

What If I Can’t? and Other Questions about #Autism and #Parenting that Wake Me at 4am

Yesterday, my husband and I managed to get Helene to school.  The process started at 7:30 am and didn’t end until about 9:45 am.  We went through various phases of resistance that culminated in Helene crying from the house, to the backseat of the car and all the way to school, “Mama, please!  I want home! I don’t like school!  Please, Mama, please!”  She had it on repeat with the volume on 10 for the whole 2 mile drive to school.  We hit every stoplight.  And, yes, there was a lawnmower running nearby just to make sure we got the cherry on top of the cupcake of our morning.

We got her into the office for the tardy sign-in routine.  Helene continued her protestations and tears.  We we told we weren’t allowed to walk Helene to class, so an aide came to get her.  Helene’s pleading to leave only escalated when the aide appeared, but somehow I didn’t burst into tears until after I was outside, and Helene couldn’t see me anymore.  I’m sure it took a good ten minutes to get Helene from the office to the classroom.

For the past few weeks, we’ve been going through some enormous changes, and I really do not know what to make of them.  As I wrote before, Helene’s teacher was out for a while, which caused a lot of classroom and staff changes.  Helene did not handle that well at all.  To be clear, I was not and am not faulting Helene’s teacher for the absence.  Obviously, that was beyond her control.  But it nonetheless impacted Helene; she suddenly became super-resistant to going to school, her sensitivity to noise spiked, and she started to vocalize more her protestations (“I don’t like ____ being one of her new, favorite expressions).  She also started demonstrating an unwillingness to leave the house — period.

So, the past two weeks, we kept Helene home from school more often than not.  We forced her to leave the house only for something “fun.”  We emailed her teacher and the principal, asking for advice.  Instead, we got a lecture about Helene’s attendance.  Well, you think?  That’s pretty much what we’re asking.  So, we met with Helene’s social worker.  She is a  lovely, intelligent woman whom I adore if only because she doesn’t talk to my husband and me like we are idiots.  She provided some great guidance, but she also reminded us that getting Helene’s IEP changed in any meaningful way before school finishes in June will be impossible.  Then, we visited Helene’s pediatrician.  I love her, too.  We got her by accident when Nate’s pediatrician retired.  She’s about my age, has two kids of her own and doesn’t bullshit me.  She listens, she responds, she follows up.  She referred us to a developmental pediatrician, but who knows when that appointment will be.  In the meantime,  I am researching websites and making phone calls, looking for information or guidance.  I’ve talked to a lot of voice mailboxes, but not a single, live human.

We held out hope that once Helene’s regular teacher returned to class and things got back to the typical routine, so would Helene.  Helene is not settling back in at all.  Her agitation about school starts at about 7:30 p.m. — the night before.  Last night, Helene was so upset about the prospect of school the next day, she climbed into my lap at 8:30 p.m. and didn’t leave it until she fell asleep.  This morning, she crawled into bed with me and said, “Good morning, Mama.  No school today.”  Sigh.  Happy Friday.

While Helene was home from school more than not, we noticed not only the concerning changes in her behavior but some really positive changes, too.  She uses more verbs:  “I hear an airplane!” or “Mama stirring it.”  She actually has conversations with us throughout the day.  Granted, these are two or three sentence conversations, but just getting from question-echolalia to question-answer is huge.  She’s stopped needing a nap in the afternoon, because we haven’t woken her in the morning for school before she’s naturally ready to rise.  That means she’s going to bed and falling asleep at a reasonable hour more often than not.  She sits on the potty at least once a day — and goes — without a huge meltdown or argument. She opened the lid on a bottle of water by herself for the first time.  She is starting to get the gist of pronouns, especially “me.”

I think about all this, how much Helene is obviously distressed about going to school, and I wonder why we make her.  Is her anxiety, which becomes my anxiety, worth whatever benefits she gets from school?  There are definitely benefits.  She can manipulate a pencil well enough to write her own name.  She will touch wet paint and not only tolerate it but enjoy it.  She recognizes the entire alphabet and numbers up to about 25.  She’s (sort of) learned to take turns.  She eats foods at school that I would never get her to eat at home.  (Although, the day she walked up to me and smashed my cheeks in her tiny hands, saying “Chew!” over and over again was a bit disconcerting.)  She has her schedule at school memorized and will gladly recite it to you.  Helene’s speech and occupational therapists appear quite smitten with Helene and to enjoy working with her.  Her teacher is very well-educated and experienced; I felt her only shortcoming was that she doesn’t have children of her own to enable a certain degree of empathy I wish she had.

But that was before the email.  About a half hour after school let out yesterday, Helene’s teacher finally responded to our request for help.  There are some suggestions in the email about talking to Helene in an “upbeat voice” and telling her to “take a breath” when she’s upset.  We were chastised again for Helene’s spotty attendance and told that was the reason for her regression.  Then she wrote this:  “By modeling calm demeanor, rather than mirroring her emotional state, we are nearly always able to redirect her.”

If you heard a huge, thunderous bang yesterday afternoon about 2:12 p.m., that was my head exploding.

For the love of Pete, Helene is my daughter.  I have a natural, reflexive instinct to take away what pains her.  If she is in distress, how can I not be?  I understand Helene will be less successful at calming herself during a fit of panic if I feed it.  The majority of the time, I think my husband and I do a very good job of keeping our cool around Helene, because we understand that helps.  But, I am human, and I am going to feel like a giant pile of shit when I haven’t had enough sleep, I’ve spent the past hour listening to my daughter beg me — using her limited vocabulary and a lot of tears — not only to let her stay home but to take her pretty much anywhere else on Earth she can think of, and I have to face the rest of the day knowing that this whole process will start again tonight.

Even then, though, I’m not nearly as offended by the subtext of Helene’s teacher’s email that we are causing Helene’s anxiety as I am about the implicit expectation that I can just turn on a dime and stop caring about how anxious Helene is.  Apparently, there is no need to be exhausted, anxious, sad, frustrated, confused and concerned about why — seemingly all of a sudden — Helene melts down about going to school.  I just need to tell her in an upbeat voice what I want her to do, then ignore the kicking, screaming, running-and-hiding, crying, begging, pleading, tearful meltdown that follows.  It worked so well for Helene’s teacher today that Helene threw up not once but twice in class.  This is something she’s never done at home unless sick with the flu.

What if I can’t?

What if alternative behavioral interventions don’t work?  What if they work only when the person employing them is emotionally disconnected from the person to whom they are applied?  Maybe it is physically or emotionally impossible for me to do this.  My instinct is to hold Helene; to rock her, to soothe her with words – and she lets me.  How do I “ignore” Helene’s “non-preferred behavior” of expressing a desire to avoid school when the whole object is to get her ready for school, out the door and onto campus?  There is a certain measure of this that seems downright idiotic to me, because how the holy hell do you do both at the same time?

What if I shouldn’t?

What if becoming a cold, sterile clinician toward my daughter instead of the loving, comforting, understanding parent I’ve been is not what’s best or what’s “right” for her?  My mommy-intuition buzzer is going off like a fire alarm, and it’s telling me that something in the classroom environment is not right.  After the monumental struggle of yesterday, I was dreading transitioning Helene from school to her social skills class.  But, when I picked her up (and we evaded the lawnmower out front and the leaf blower across the street — WTF???), she said, “Go see, Dr. __, ___, __?,” naming off the teacher, aide and student in social skills to whom she seems most to relate.  We got to campus, parked, and Helene walked with me from the car to the classroom – a considerable distance – without complaint or even encouragement.  When the aide opened the door, Helene walked right in without even saying goodbye or looking back.  I walked to the car wondering, Why so different?  The only explanation I can make sense of is that there is something in one classroom she really doesn’t like and nothing in the other classroom that bothers her that way.

What if it backfires?

After reading Helene’s teacher’s email again last night, when I was in a better frame of mind to process it, it occurred to me that the applied behavioral intervention techniques Helene’s teacher uses might be backfiring on her.  Apparently, the practice involves telling Helene, “I don’t like it when you ___” [insert whatever Helene is doing that is not “preferred”].  If, after a couple of attempts to redirect her the teacher is unsuccessful, Helene is deprived of attention.  Repetition is apparently a key to getting the student to replicate preferred behaviors.  Well, it’s working — Helene learned to imitate this perfectly.  When she doesn’t like something, she tells us.  If she doesn’t get what she wants after several attempts at expressing her displeasure, she tries to evade us (e.g., deprive us of her attention) by tuning out completely or running upstairs and hiding under her brother’s bed or in ours.  If this is the result her teacher is shooting for, she hit the target.  Somehow, though, I doubt it.

What the Hell Am I Doing?

What I’m left with – yet again – is more questions than answers.  I don’t know what the right thing is here.  Do I push Helene to continue at this school, under this IEP?  The message I took away from the teacher’s email was that either we do that or she and I are no longer partners but enemies.  How’s that gonna work?  So, do I look into other schooling options?  I don’t even know if there are other options short of homeschooling her.  And, is that what’s best for her?  Sure, no one will love her more or try harder than I will (or her dad would), but I’m not a special education teacher.  There are somethings I won’t push because I am her mom, because I do love her and, therefore, having feelings about the cause a conflict between what’s best for Helene and what’s manageable for me, and because I have her 24 hours a day, seven days a week (about which I am not complaining but which does affect how much energy, patience and time I can give her).

In the law, the only sure answer is “it depends.”  I know that same philosophy applies here — what would a reasonable person do under the totality of same circumstances?  But, that lack of certainty never bothered me in my office, because I knew where to go to find the answers.  I could find a needle in the haystack of never-ending judicial opinions, statutes, regulations, practice guides and treatises.  Now, though, I am experiencing the desperation and frustration that comes from uncertainty and a lack of boundaries.  Damn lemons.

So, I would love for adults on the spectrum or the moms, dads, caregivers or relatives of someone on the spectrum who traveled these roads before I to share what has worked for you.  Please don’t tell me I am an awful mom, or that I don’t understand my daughter or autism.  First, I beat myself up enough, okay?  Second, I swear to you I am trying.  Help me; don’t judge me.  And please accept my advance gratitude for whatever advice or experiences you are willing to share.

Why I Will Light it Up Blue Today (and Everyday) #LIUB

Dear Helene:

(Yeah, I wasn’t gonna use your real name but most of the people who read this already know who you are, so what the hell.  Oh, and don’t swear.  It’s not ladylike.)

I spend a fair amount of time on this blog talking about the challenges of raising you.  But, you have to know I wouldn’t trade you for the world.  To the CDC, you are 1 in 88.  To everyone who is lucky enough to know you, you are 1 in 1,000,000 (times ∞²).

Why, you ask?  Well, let me tell you.  When I close my eyes, and I can still see the way you’d wring your hands together when you were hungry and waiting for a bottle.  You looked like a nervous Greek grandmother, waiting for a girl late for curfew.  I confess that more than once,  Papa and I waited an extra 10 or 15 seconds to give you that bottle, just so we could watch your pudgy little fingers dance around themselves.

When we “fenced” you into your playroom, it took you less than five minutes to figure a way out by pushing a “drum” next to the gate to try to climb over it.  I watched you silently as you worked through the solution — eying the gate, eying the drum — slowly inching the drum toward the gate, your furrowed brow betrayed by the slow smirk forming at the corner of your mouth.

When I leave the house, I love the way you say, “Bye, Mama.  Have good time!”  When I get home, I love that you run outside to meet me at the car.  When I ask if you had a good day, I think it’s adorable when you respond, “Had a day.”

I will never forget the day I was telling Papa something sad while you were playing on the floor next to us.  When I started to cry, you looked up and said, “Oh, Mama.  It’s okay.”  When I scooped you up off the floor, you patted my back as I held you.

I love the sound your little feet make as you shuffle down the hallway from your room toward mine, because it brings one of my favorite parts of any day — that moment that isn’t quite night but isn’t quite morning when you crawl into bed between Papa and me, ask for “covers,” and snuggle down beneath the blankets.  I love the way you — just like I — need a blanket against your face and a hand or foot touching Papa. I love the way you suck on your bottom lip but yet manage never to leave a mark on it.

I love listening to the way you call out, “Oh, Spud!” from the downstairs couch when you’re trying to get your brother’s attention.  There is almost nothing better than the sound of your laughter intertwined with Nate’s as it drifts from room to room in the house like breeze through an open window on the first warm day of Spring.  I can still giggle thinking about the day you asked, “Where’s Spud?” When I said, “At school,” you replied, “That’s so sad.”

There are days that are challenging.  I know you get frustrated when I don’t understand you.  I know going to school is hard for you.  I know sometimes your body and mind do not cooperate, and I can only guess what that must feel like inside for you.  But, more days than not, Helene, those challenges are small compared to how much better my life is for having you in it.  I love you — not because you’re 1 in 88, not in spite of it, but because you are me, and I am you.

Forever and ever,

Mama

 

The One Where I Find Out I Can’t Juggle

I’m not crazy, M’Lynn.  I’ve just been in a very bad mood for the last 40 years.  — Ouiser Boudreaux, ‘Steel Magnolias’

Here’s the thing about juggling.  If you think too much about the mechanics of keeping the balls in the air, you are bound to drop them.  Maybe you’ll get lucky and drop only one.  But, more often than not, everything’s gonna wind up on the floor and getting away from you.

For the past two months, I’ve spent an awful lot of time thinking about the mechanics of juggling, and shit is hitting the floor.

I am certain that until the moment I actually went to work as a lawyer — sat down behind the desk, staring at my name on letterhead — I believed I could simultaneously be a spectacular mom and a kick-ass professional.  Oh, sure, I had talked to or read about other moms who were “struggling” with finding a balance between work and home.  But, that was them, and I am me.  My whole life, I’ve always managed to land on my feet.  Things work out because they just have to work out.  Over the course of fourteen years, I’ve managed to balance law practice, a teaching career, parenting, volunteer work, running a house and the occasional side project.

Lately, though, I’ve been asking myself:  why?  I can’t be doing all this for my kids.  If given a choice between me being home and available to them or constantly at work or traveling, I think they’d choose to have me home.  I can’t be doing this for my husband, who has to pick up the slack when I’m away (which is a lot) and who has had to essentially put his own career on hold to accommodate mine.  I can’t even be doing this for me, because I’m too damn busy getting through this stuff to actually enjoy any of it.

Sure, I’ve had some successes.  I’ve scored some big wins for clients.  I’ve had my work complimented by judges in open court.  I’ve seen many of my former students go on to become lawyers and do well for themselves.  I save all the emails from students that come years later, thanking me for what they learned in my classes.  I have the best husband a girl could ever hope to have (and not just because he hasn’t killed me yet).  I have two beautiful, amazing kids.

This should be enough, right?  To ask for any more than this is selfish and greedy.  Well, I don’t want more; I want less.  I want to forget this stuff:

  • The first day you drop your baby off at daycare will be the singularly worst day of your life.  You will bill 1.1 hours that day.
  • The day you are to take your first deposition, your son’s school will call to say he has a fever.  There will be no one else who can pick him up.  There’s no one else you really want to pick him up.  But, you’re a second-year associate, and telling your male supervising partner (whose wife stays at home with their kids) that you need to leave makes you want to put a hot stick through your eye.
  • There will be countless Saturdays that you can’t go to the park, or bowling, or to a movie, because you’re trying to catch up on billable hours.  You hate yourself as you start yet another Thomas the Tank Engine video.
  • You will be in a car accident and have your hand broken, make a Herculean effort to get your kids to school and yourself to work, and have a supervising partner look at your cast as you walk in the door and ask, “Where’s my brief?”
  • You and your spouse will have a scheduling conflict and no one to watch your daughter, so you will hide her under your desk at work as she naps while you get in as many billable hours as possible.
  • The phrase “quality of life” describes the difference between working Saturdays and Sundays or just one of them.
  • You will be shocked to find sympathy for this struggle more from male lawyers than from female lawyers — especially the female lawyers who do not have children.  There are women who will absolutely despise you for taking maternity leave.  You, in turn, will want to strangle the women in your firm who take maternity leave and then string the firm along on a return-to-work date only to decide not to return at all.
  • It’s really fucking hard to leave your kids everyday to go to work if you don’t absolutely love what you do, no matter how good you might be at it or how much money it might provide your family.  You do not love being a lawyer.
  • It will be cause for celebration in your house when you are actually home for dinner.  If you make dinner, your family will be confused by the plates and silverware as they search for bags, boxes and sporks.
  • Your daughter will be diagnosed with autism, but you will stay in your job for years because of the guilt you feel about “wasting” $100,000 on a legal education and for breaking promises you made to the firm that supported you.
  • You will develop insomnia and random but real pain throughout your body.  Your doctor will suggest you see a mental health professional, and you will not only ignore him, you will actively look for another doctor, because yours is clearly an idiot.  (Except, you know, that he’s not.)
  • You will say mean things to your husband and your children that you don’t really want to say but that fly out of your mouth because you are exhausted and bitter.  The words I’m sorry are said way too often.
  • You will end up in a puddle on the floor of a therapist’s office, begging her to save you from yourself.

So, here’s what I’ve realized in the past couple of months.  Yes, there are women who do it – who manage career success and still make soccer games and dance recitals and band concerts.  I am not one of those women, and its not just because I have a daughter with special needs (although that’s really forced me to confront this).  So, on Friday, I put the balls down and took a leave of absence from my law firm.  What I finally realized is that if I don’t take care of myself, I am no good to anyone else.  I might be able to make up billable hours, but I can’t make up for lost time.  There is no one at the finish line of life handing out medals for juggling, and I don’t want a medal anyway.  I want kisses and hugs.  I want to read books, play in the park, make flashcards, chaperone field trips and make dinner every night.  I want to exercise more than my brain.  I want to be present in my life instead of just going through the motions of living it, building a resume that looks good on paper but leaves nothing meaningful in my wake.  I want to figure out how to heal.  I want to know whether I can handle more than one job and do both of them really, really well.

I can’t juggle.  But, the beautiful thing is, the only person who really expects that of me is me, and I can stop whenever I want.