Tag Archive for: SPD

Shedding Her Skin

Lola is comfortable in her own skin. Emotionally. By that, I mean to say that she is quirky, irreverent, and more than a little bit unique and she is perfectly okay with that. She has no desire to change the core of her personality to better fit anyone else’s idea of how she ought to dress or what she should find funny and she generally celebrates the ways in which she sees the world differently from most people.

She is occasionally terrifically uncomfortable in her own skin physically.  She struggles with sensory perceptions in ways that I can’t possibly understand but have learned to recognize. She hates the volume of sound in a movie theater. She is overwhelmed by the lights and sounds and smells and people offering her samples at Costco. She is very particular about the kinds of clothing she is willing to wear and can be a little obsessive about making things “even.”

Over the years she has taught herself ways to accommodate and/or avoid the things that drive her batty and in many cases she has challenged herself to endure some very uncomfortable situations in an effort to desensitize herself.  She has come a very long way in learning to tolerate things that were once unthinkable but a few sticking points remain.

She is terribly susceptible to motion sickness (but in one shining example of her courage and willingness to not let it diminish her experiences, she went on a three-day sailing trip with her class early in the school year and had a fabulous time despite some bouts with nausea).

She also struggles with transitions.  I have written about this before, especially with respect to the transition out of the school year and into the summer and vice versa.  We generally have a few days of teeth-grinding frustration before she can settle in to the new phase she has entered and it generally takes me by surprise despite the fact that it happens every year.

And so I ought to have considered that when Bubba and I decided to spring a surprise vacation on the girls for their mid-winter break.  We planned the week in Hawaii with glee, whispering and snickering together about the major secret we were keeping.  We orchestrated everything without them getting suspicious – arranging for the dog to be boarded and someone to housesit for us and yet another friend to hamster-sit – and the night before we were to leave we told them to pack their bags. We were heading to one of their favorite places for nine days and they had better dig out shorts and tanks and swimsuits.

They were ecstatic and so were we. We had managed to pull of an enormous coup!  What fun.

And it has been, but by Day 3, Lola was a little on edge. She had spent two full days jettisoning herself between the ocean and the pool, lying in the sunshine reading and going for walks on the beach with Eve. Bubba and I were enjoying our newfound freedom now that the girls were responsible enough to go off together for a few hours at a time and we were soaking up every lazy moment.

As is their ritual, Bubba and Eve woke before sunrise and headed out for a beach walk together.  Lola and I lazily made our way into our swimsuits and promised to join them shortly.  And that’s when it hit. First, Lola complained that her hair wouldn’t stay down and she was clearly agitated.  I rolled my eyes, dropped the beach bag and wet a washcloth thoroughly to plaster it down.

“As soon as it dries it’s going to stick up all over again!” she yelled.  I shushed her, worried that she had just woken up the neighbors.  She stomped her foot.

Then the strings on her bikini bottom made an “uncomfortable lump” underneath her shorts and she tugged and fussed and picked at it as enormous tears formed in her eyes.  I shifted from one foot to the next, shushing her again so she wouldn’t bug the neighbors.

“I DON’T CARE ABOUT THE NEIGHBORS!” she shouted and I found myself at a crossroads.  Mentally cataloguing the morning’s catastrophes, from itchy, sandy flip flops to hair disasters to sunburned shoulders to this, I realized what this was.  My friend Michelle’s words appeared in my head:

Where there is (bad) behavior, there is pain.


Oh, yeah. This had all the earmarks of a classic SPD meltdown.  Each of these petty things would normally not phase her. She wasn’t trying to be difficult. She was hurting.

I put down my bag again and joined her on the bed where she was face down, sobbing with spine-shaking gulps.

“I think that this might be what it looks like to be uncomfortable in your own skin. Do you think so?”  I kissed her on the top of her head.  She nodded emphatically.

“I-i-i don’t know what to dooooo,” she wailed pathetically and my heart broke open a little.  For the moment, I could completely forget about whether Eve and Bubba were getting impatient with us. I had to help her.

“I’m sorry we sprung this trip on you and I know you want to enjoy it.  I think that you are growing up a lot right now and maybe you’re a little too big to be in this skin anymore.  You think?”

I asked her whether she wanted to picture herself as a snail who had outgrown its shell or a snake who needed to shed its old skin.  She chose snail.  And I had her close her eyes and breathe deeply three times.

“Picture yourself as a snail.  Your shell can be any color you want and when you look next to you, you see a different, bigger shell.  Take a minute to create that bigger shell in your mind’s eye. What colors does it have? What is its shape? Is it smooth or spiky? Long and lean or tall and round?  Don’t tell me. Just picture it in your mind.  Now take a moment to feel what it feels like to be in your current, small shell.  It’s a little too tight and restrictive, isn’t it?  I want you to take a deep breath in and when you let that breath all the way out, your old shell is just going to pop right off your back and roll to the side.  When it does, I want you to look at it and silently thank it for protecting you all this time.  Be grateful for all it was for you and let it know that it was important, but that you don’t need it anymore.  Now, before you turn your attention to the new shell, I want you to focus on how great it feels to be out of the old one.  It’s a little scary because you’re pretty vulnerable, but you’re safe for now.  Just take some deep, deep breaths and stretch your self out into this new, open space with each exhale.  When you’re ready, slip into your new beautiful shell and feel the cool, smooth inside that was made just for you.  Take a moment to wiggle around in it and orient yourself.  Feel how it’s not too heavy for your back and it feels expansive and comfortable.  When you are ready, thank the new shell for being there and open your eyes.”

Lola sat up slowly and looked at me with a grin.  “Thanks, Mom. I just needed to stretch my spirit.”

She got up, pulled a loose skirt over her bikini bottoms, slipped her feet into her flip flops and held out her hand.

Times like that are an important reminder for me that it is so much more vital to take the time and address how we feel when we’re feeling it than to try and shove those uncomfortable emotions out of sight.  It took maybe three minutes to interrupt her obvious physical discomfort and turn it around and it was more than worth it.  Maybe next time she’ll be able to do it herself. Maybe I’ll have to help a few more times before she’s got it down.  I’m just grateful to have been given the gift of being her mom for now because I’m learning just as much as she is about what it takes to be sensitive in the world.

Wherever You Go, There You Are

And so, despite the fact that I am seated in a cushy lounge chair near the pool at a lovely resort in Kauai, life is still upon me.  I had no illusions that time would stop or there would be a brief window of ultimate peace while I went away and, to be honest, I am relieved to be contemplating my challenges in such a glorious place.  During my younger years, I would have been honestly surprised that coming to such a place for a vacation wouldn’t instantly put on hold any angst or difficulties I was experiencing, but I know better now.

Lola, despite the sun and relaxation and pretty much 24/7 access to a body of water in which to swim, is struggling mightily with her SPD symptoms.  Transitions are hard for her and this absurd cliff-dive from regimented school days to completely structure-free summer days leaves her adrift every year.  No matter how much I try to impose predictable mealtimes or down-time in the middle of the afternoon it seems that the lack of scheduled activity pushes Lola to a place of discomfort in her own skin. She fights to put a name to what she is feeling, unsure of what it would take to make her comfortable. She doesn’t acknowledge hunger or thirst until it is far past the point of no-return, she flits from activity to activity, immersing herself in one or the other at some point in an effort to simply shut out the entire world around her.  
Yesterday she sat by the pool playing games on her iTouch until the battery died. I sat nearby chewing in the inside of my lips in an effort to leave her be, hating the glow of the screen on her face on such a glorious day. I wanted to ply her with a beach walk or a dip in the pool or a shopping adventure and couldn’t seem to discern whether it was because I thought it would be better for her to get up and do something or because I hate the notion of her sitting still playing video games on a sunny day in Hawaii.  Predictably, she melted down in the afternoon, hot, thirsty, hungry and weepy and I berated myself yet again for not knowing how to help her navigate this move from school to summer.  I feel as though it surprises me anew every year and I have yet to feel like I am surmounting a learning curve. Instead it looks like a series of dashed lines all on the same plane, interrupted by the blank space of the school year.  But the transition from summer to school is just as difficult and disruptive, the Monday mornings fraught with tears and hysterical pleadings to help get SOMEthing right – her hair, her shoes, the seam on her jeans – me knowing it isn’t those things at all but unable to convince Lola.  
And yet, the vacation is giving me some solace as well, if only in its distance from ‘home.’  My mother’s husband has been in the hospital since before we left, first fighting a severe infection and then undergoing two surgeries with prospects for a third today.  The solace is that, for me, setting boundaries with others who are struggling has never been easy but this, the fact that I am a five or six hour flight away from sitting by her side and the knowledge that both of my siblings are close by, means that I have artificially imposed boundaries.  I am learning to empathize and have compassion and hold space in my heart for her as she deals with her fear and the logistical challenges of running his business and their life without dashing in to fix things like I normally would.  
The first book I read on this trip was Anne Lamott’s “Some Assembly Required” and while I highlighted many, many astonishing bits of wisdom in it, one keeps coming back to me as I check in with my mother via phone every day.  “If it isn’t my problem, I don’t have the solution.”  While that may sound callous, the truth is that I don’t have the solution. I could run around giving advice, searching for answers, talking to doctors and nurses, holding my mom’s hand and generally making myself feel better because I have the illusion of “doing something,” but in the end, what is going to happen is going to happen regardless of whether I am there or not.  I know that offering my mother love and comfort over the phone is better for both of us – we will end up not resenting each other’s lack of boundaries – and the outcome will be the same.  
And so here I am.  In this lovely, lovely place with my family, warts and all.  And I shall rub sunscreen on those warts and go forth to enjoy the day, knowing that what happens is all part and parcel of this life of mine and I feel pretty damn lucky.    

Perception is Reality

That’s what Bubba always says, and to some extent I believe it, although I’ve always been more comfortable with the notion that there is some concrete Reality/Truth out there somewhere that is discoverable. It gives me hope. It helps me to trust that I just have to buckle down, put in some elbow grease and keep looking until I can finally shout, “Eureka!”

Some days, this is why parenting sucks. Because while we can look at ‘norms’ and ‘averages,’ each of our kids is an individual and they have their own quirks and lovable qualities and refusals to FIT IN THAT DAMN PIGEONHOLE ALREADY.

So Lola has some quirks. Okay, a lot of quirks. But that is what makes Lola, Lola. (I know that comma doesn’t belong there, but I needed the pause in between the two Lolas, so I had to leave it there). About six months ago, she began complaining of “habits” that bug her. I noticed them a long time ago, but figured that as long as they didn’t cause her any problems and she was otherwise healthy, I was going to leave them alone. Time’s up, Mom. She had gradually become aware of a tendency to raise her eyebrows and then scrunch them down as far as they could go. She did this about forty times a day, generally when she was physically still, like playing a card game or listening to a story or working out a problem at school. She was afraid that the other kids would notice and begin to make fun of her and, frankly, it freaked her out that it didn’t seem to be something she could stop doing.

She progressed from this to what we call the ‘bunny face’ where the skin on the bridge of her nose gathers up and she puckers up like she wants a kiss. Finally, about a month ago, she began noticing a severe eye roll to the top left that, by the end of the day, left her with awful headaches. Add to this a tendency to “claw” her hands when she needs to use them for something that requires concentration (piano practice, card games, math problems), and she is frustrated.

Those of you with kids who don’t fit the ‘norms’ will understand what ensued next. As many disparate ideas as there are specialists. My therapist offered to score a test for ADHD (seems Lola scores in the 90th percentile for hyperactivity – duh). The naturopath suggested we test for more food allergies, B vitamin deficiency, and anything that can cause hypersensitivity. Bubba doesn’t see it. Or maybe he doesn’t want to because perception is reality. Or maybe it’s just that he rarely spends quiet time with Lola – they are usually wrestling or shooting hoops or chasing each other around the yard. Lola’s teachers haven’t expressed concern, but she’s in a nontraditional school setting – she’s allowed to pace while she reads to herself, work cross-legged on the floor, dissect lamb hearts and brains, and help design her own curriculum. What teacher would notice hyperactivity or tics in that setting?

The therapist and the doctor see it. Lola feels it. She admits not telling her father about it because she’s embarrassed. In the meantime, I’m loathe to medicate her for ADHD since those symptoms don’t seem to be causing her problems and, what if they take away the essential Lola-ness that she has to be funny and crazy and impulsive (well, I could lose some of the impulsivity…). Are the tics Tourette’s? I long suspected that Dad had some form of Tourette’s, but he’s gone now and there’s nobody to corroborate that.

I’m at a crossroads and wondering whether there is some concrete Reality/Truth out there that is discoverable. If so, should I kill myself to find it? If not, what’s the best course of action? And whose perceptions trump whose? Is Bubba’s reality more real than mine? What about Lola’s?