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.

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

  1. Gina says:

    I have no pearls of wisdom, and I damn sure have no judgement. What I do have is respect, admiration, and love. Lots and lots of love. For you and Thor, and for the most awesome nephew and niece an Auntie could ever be blessed with. I’ve loved them since the moment they were born, and love each of them for exactly who they are.
    I hope someone with some actual advice replies too! Always know. . . I love you more than my luggage!

  2. Ok – disclaimer (well…you are a lawyer after all!!) I’m not a professional, but the professionals say – behavior is communication. So what is your child’s behavior communicating to you? It does sound to me like she is very unhappy in her classroom – for whatever reason. Is there a way you can spend some time in the room as a volunteer? Just so that you can see what’s happening. Or have a talk to anyone else who is in the room regularly who could give you an opinion? I’ve only read this one post of yours (so far…) so I don’t feel like I’ve got the full picture, but it’s pretty clear that your little darling is seriously unhappy about going to school, to this class.
    I really feel for you – it’s so hard sometimes, but hang in there. You know that this will resolve and that there will be some new exciting challenge just around the next corner.

    • ProfMomEsq says:

      I’m with you on the question: what is Helene’s behavior communicating to me? But, I am having a difficult time answering that. I really like your suggestion about volunteering in her classroom, and that’s something I’m going to try to do when the kids go back to school after spring break. Thank you for taking the time to read my post and to comment. Encouragement is often as helpful to me as practical advice, and I really appreciate it. I am happy to have found your blog, too, and I enjoy your posts!

It's boring when I do all the talking around here. Speak now, while you can get a word in edgewise.

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