FOURTH ANNIVERSARY LISTS II: ATTACHMENT DISORDERS

Dear Persons,

There are not as many advocates for attachment disorder awareness as there are for the other areas of advocacy I explore, such as adoption, autism, and sensory processing differences. For this reason, I regularly revisit this theme for this one-topic anniversary post.

Over the years, I’ve tended in this blog to focus more on autism awareness and advocacy because our experiences with attachment disorder feel somehow more private, more inflicted. Attachment disorders cause children (and adults) to act in ways that are often unhealthy, even anti-social, all because of negative childhood or early life situations that did not allow them to form healthy attachments, or prematurely severed such connections.  Unlike autism and other neurological differences, typically inborn states that do not fundamentally need to be “cured” (I write a great deal on this elsewhere), attachment disorders are a sometimes incapacitating psychological condition that can benefit from intensive treatment, primarily through therapeutic parenting or work with an experienced therapist.

I share our Full Spectrum family struggles with my daughter Z’s attachment disorder for two reasons. First, because families all or partly formed by adoption or fostering may be facing this condition unawares, and may be desperate for help; and, second, because one of the central reasons we are a Full spectrum is because my children are so divergent – and this is partly because of Z’s attachment disorder. 

I will offer a little background. As you read about my daughter, please do so bearing in mind that her condition was/is not her “fault” – and is therefore nothing to be ashamed of...

When Z came home she was furious - with good reason. She was ultra-demanding, starving, relentless.  As she got older she began to steal, hoard, and lie compulsively. She became controlling - and a master manipulator. Constant power struggles with a tiny person were exhausting for the whole family (including Z!). Her tantrums continued to disrupt almost any environment she found herself in, well into her ninth year.

Her acting out was most overt with me, her mother, because she trusted me the most -- and thus needed to constantly test me. Highly challenging attachment-disordered behaviors may well be reserved for the home environment, or particular individuals, such as a parent or teacher.

While she was small of stature, adorable, and enormously charming – traits which her therapist pointed out were actually a disadvantage to healing, because they masked the ugliness of her behavior – Z’s behavior much of the time was destructive in subtle and not-so-subtle ways.

If you have a child who is exhibiting such behaviors, GET HELP. Trust me, you’re going to need to learn to do things very differently than you might expect! For example, many families with children who were adopted attempt to make up for any pain caused by the loss and turmoil of the adoption process by being indulgent and extra-doting with their children. Conceding to a child’s every demand, even with loving intent, can be a recipe for disaster with a child who has an attachment disorder. Look for a therapist with expertise in this area, and read everything you can find. I’ve talked about some specific strategies here and here and here, as well as below.

Children (and adults) with attachment disorders desperately need to feel SAFE. To that end, they try to control the things and people around them.  It might sound counterintuitive, but – in a very real way – such attachment disordered behaviors emerge in a painful search for safe, strong attachments. Unfortunately, attachment disordered actions tend to result in forming primarily conflict- and need-based relationships, rather than healthy, loving ones.

TMI? Successful therapeutic parenting in one sentence? Yes:

Create an environment with

CLEAR and

CONSISTENT

RULES and

BOUNDARIES

          so that your child can feel safe

-- and so can channel his or her energy into healing and growth.

As unknown as they are, attachment disorders are very real. They can be debilitating for families; they are also sometimes almost completely curable. In our family, many years of consistent therapeutic parenting, at times under the care of a therapist who specializes in attachment disorders, have resulted in a child who is light years healthier and happier than she would have been without this specific mode of therapy.

As Z heals, her true character – brave, loyal, funny, quick, loving - begins to emerge, unhindered by a condition imposed upon her by chance through her birth circumstances. She’s strong, in her own words, “Tiny on the outside but HUGE on the inside!” She’s a wonderfully practical girl, sometimes a bit more blunt than she was raised to be...but these things are characterological, part of her disposition, not just a result of trauma. In fact, we see a myriad of traits, such as being an astute judge of character, that merge positive aspects of her natural self with lessons learned from living through an attachment disorder. Perhaps best of all, while she’s never going to be the world’s most sentimental person, she’s cuddly in a way I could not have dreamed of even a few years ago.  

She feels safe enough to relax in my arms...versus her previous inclination to demand that I carry her around at all times. The wonderfulness of this shift cannot be overestimated.

Children are terrifically resilient and, like plants, they just want to GROW. They just need the right conditions to do so in the healthiest way possible for their unique needs.

Love,

Full Spectrum Mama

IS IT SHOWING?

Dear Persons,

In IS IT TOUCHING?, I explored how the traditional view of sensitivity is limited --and somewhat discriminatory toward highly sensitive people and people with sensory processing differences (SPD).  I meant to put forth the idea that the way we perceive and process things should be recognized as a sort of neurological/physical/emotional/temperamental spectrum. Simply put, we have widely divergent levels of physical and emotional sensitivity. Furthermore, as self-advocates and advocates for our children and loved ones, it is up to us to decide whether our sensory (I include emotions as feelings here) processing differences are problematic, or glorious, or both, or neither...

This post was one of my most-read ever, and elicited many responses, both public and private.

One interesting theme that emerged from these conversations was that of EXPRESSION. I heard from people who have incredibly strong sensory and/or emotional feelings – but hardly express them at all. And I heard from people who feel they are “all over the place” in a sort of hot mess way and want to calm their actions, reactions and attitudes down (here is where some calming sensory activities might come in handy!). I heard from parents with super-sensitive, expressive children whom they are trying to understand...In short, it emerged that what we show (in those actions, reactions, and attitudes) is not just an exact reflection of what we feel.

So, this month, I’d like to bring your attention to the possibility that sensitivity does not correlate directly or evenly with expression or external reactivity. Some people develop coping mechanisms to hamper their reactions because of cultural or familial pressures. Some are naturally less expressive. Some people stuff their feelings. Others let it all hang out, sometimes in spades – intentionally, or because they cannot suppress the expression of their reactions.

Another manifestation of the sensitivity/expression interplay may be seen in those of us with sensory processing differences where certain stimuli that might seem minor to others (tags on clothing, bright lights, strong tastes or textures in food, temperature variations...) are interpreted by the brain as major. This may then result, expression-wise, in sensory overload or “acting out” or “shutting down” or...

At the extremes, you get people who may appear histrionic – your drama kings and queens who scream when stepping into a puddle of water (guilty) or a person gives them side eye; or your heartless stoics, who don’t even flinch when a finger is cut off or a loved one dies.

Notably, the histrionics and the stoicism may reflect/express SIMILAR levels of sensitivity, exteriorized in different ways. What we are experiencing inside is not always expressed in ways that exactly match our inner experience of intensity. People can be low on the sensitivity scale, but high on the expression scale; or they may feel deeply, yet not be expressive of that externally...

We may feel or express less – the proverbial “stone;” we may feel or express more, experiencing or acting explosively, like “fireworks.” These two things – what we feel and what we show - don’t usually occur in a matchy-matchy fashion.

What’s more, sensitivity itself can be emotional, physical, neurological...; while expression can be through actions, words, attitudes, moods...AND, as this scale shows, these factors can intersect in a Full Spectrum of ways!

Figure I – Showing Chart: Sensitivity and Expression: Stone to Fireworks, Squared

In addition, our attempts to modulate our expression are not always in line with our intentions.

As I wrote in IS IT TOUCHING?, I am a total sap and literally – embarrassingly! -  unable to not cry under a variety of circumstances, from funerals and other clearly sad occasions to anything touching (try this for a tear test), sentimental, or even joyous.

On the other hand, things that move me powerfully but are hurtful, complicated, or angering can overwhelm me and cause me to shut down and seem withdrawn or even cause a meltdown (internally!). And I am just one feeling/expressing person, a fraction of my Full Spectrum family. I am still trying to figure out my son, who sometimes can appear extremely insensitive as a reaction to sensory overload; my daughter, who seems impervious to all but a very few extremely, tremendously sensitive areas; and Pardner, who has the rare gift of being sensitive but non-reactive, observant and caring, yet as steady as can be. But Pardner has his areas of sensitivity, too: do not put your bike up against his car, nor, if you are a child with potential child gore on your hands, or a hairy cat in your arms, should you “touch the threads.”

So, finally, our sensitivities and expressions thereof can also vary from experience to experience, with different situations being more or less

Manageable/controllable,

moving/touching/intense,

and/or expressed

!

In the neurodiverse world, terms like “over-responder” and “under-responder” get thrown around, as if there is a mean level of response that is correct. Add on different ideas about social cues and behavior, reactions that may be judged “inappropriate,” or “unexpected”...Whew. I’m looking to expand our perspective on what’s a natural part of the range of human being, not criticize people. Human sensitivity and expression weave together in diverse, complex and fascinating ways, in a dynamic matrix represented here by a spectrum from stones to fireworks.  

What holds for all of us is that we want to be our healthiest selves. We have the privilege and responsibility of figuring out what that means - for our children, for ourselves, for our communities.

Love,

Full Spectrum Mama

 

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

KID KOANS III

When is helping not helping?

How can we tell when our conceptions of our children get in the way of clear perception of our children?

Protect or Trust?

TEAM FRIENDLY FACE AT HIGH SCHOOL ORIENTATION

Dear Persons,

Team Friendly Face (links: http://fullspectrummama.blogspot.com/2014/05/team-friendly-face.html and http://fullspectrummama.blogspot.com/2014/06/team-friendly-face-update.html), convened at the beginning of Middle School, was represented the other night by a few friendly faces as I walked apprehensively into the orientation for parents of incoming ninth graders.

The auditorium was significantly less full than I would have expected, given the size of the incoming class of first year high school students. To this casual observer, it emerged that there were basically two types of parents who chose to attend this event. Both sets looked keyed-up, nervous. But one set looked excited, too, whereas the others, my Friendly Face peeps, looked TERRIFIED. We know how hard transitions can be for our kids, both for individual reasons, such as anxiety around new things, executive function challenges, and so on, and for larger-scale reasons, such as the inevitable jostling and alienation that come with new social situations and groups. (Guess who’s usually targeted in high stress situations? People who are different? Yup.)

The future  AP parents, the ones who indeed legitimately signed the Honors English agreement that was in the million-page high school transition packet – the Honors English permission form that I’d signed because, why not? Hey, my kid is GIFTED, and...um...honorable – kept asking questions about things like “prerequisites for calculus.” The rest of us cringed, kept quiet. Sure, the school administration and teachers seemed welcoming and nice, but we all knew our kids might need a slightly different – probably more extensive - set of guidelines.

After the presentation, I felt shellshocked. Team Friendly Face member J came over to me, crying. I felt a migraine descending. We tried to prop each other up. Team Friendly Face members K and C reminded themselves and us that our future ninth graders have such a gift for finding the good in every situation. That our fears don’t always manifest – and often go blissfully unshared by our children...

Then my shy, sometimes uncertain, Team Friendly Face friend J walked up to the Special Education representative and, before my eyes, turned into an articulate, assertive Warrior. While I stood mutely by, gazing through narrowed eyes, trying not to sway or vomit (migraines are fun like that), she introduced herself (and me), asked some really smart, important questions, and just basically advocated her butt off for her son. I was so proud of her! And a bit ashamed that I’d just written a whole post on advocacy...But then sometimes we need to lean on others when it gets too much. I was super grateful for those Friendly Faces at this event! I know I will be getting plenty of chances to advocate in the next few months and, thanks to J, some of my questions have already been answered.

   

It was also a comfort to know I could jot down some reflections on this ordeal in my 300-page and growing Full Spectrum Mama draft file. I publish only a fraction of my writing, but somehow the luxury of writing things down, along with the opportunity to process this writing provides, and then – when appropriate, when I have the time to polish the writing, etc. -  I am grateful to be able to have a part in the wonderful blogosphere phenomenon of letting others know they are not alone.

That being said, I’ve always seen THE COMPLAINT DEPARTMENT as a place where ANYONE can share their experiences. I will be publishing a plethora of COMPLAINTS in the upcoming yearly post. Please email me your tisk-tisks, your triumphs, trials, tribulations, tales of woe and so forth at jineffable@gmail.com. 

Love,

Full Spectrum Mama

FOURTH ANNIVERSARY LISTS I: ADVOCACY

Dear Persons,

Every year, this time of year, I get to indulge in a series of posts that use my most beloved mode of thinking and organizing: LISTS.  The first in the series has always been on ADVOCACY, a subject central to most everything I believe, ponder, and do, as a mother and as a writer.

I’ll be heading into both three-year IEP evaluation meetings and high school transition meetings in a few weeks. Considering the week I have just had, where I

1. noticed on page 27 of a 40 page IEP informational packet that G’s services were being cut from 24 hours per week to 11 for this fall when he starts high school;

2. noticed that G was once again failing several classes and had to engage intensively with him and his teachers and paraprofessionals and case manager* to get him back on track, mostly around executive function matters; and

3. travelled 45 minutes to an away basketball game to watch G play, having attempted a four-tiered system to help him remember his gear (for the record: written list, email, lecture at breakfast, and quiz in car) only to find that he’d forgotten his shorts.**

            ...this was a great time for me to review my advocacy lists and get prepared for what’s to come! As my Meeting Friend can attest, this sort of schedule of minor disastrophes is all too typical for we atypicals, so any time can be a good time to sharpen our advocacy skills.

Here are my previous anniversary posts on advocacy, chock full of tips for success (and some choice “don’ts”) in delightful list form:

Links:

http://fullspectrummama.blogspot.com/2013/01/first-anniversary-lists-i-advocacy.html

http://fullspectrummama.blogspot.com/2014/01/second-anniversary-lists-i-advocacy.html

http://fullspectrummama.blogspot.com/2015/01/third-anniversary-lists-i-advocacy.html

You can also use the “search” function at right to find more posts pertaining to this important subject.

Since I’ve been blogging awhile now, I’ve more and more had the privilege of being asked for advice and support from near and far around advocacy. It’s probably the thing I get the most queries and referrals about, and I am pretty sure that’s because we all get intimidated as well as confused by powerful, sometimes-inflexible, institutional systems that are larger and more complex than us, and full of people who have their own agendas, not to mention the need to become well-versed, quickly, in completely new subjects...All the while dealing as individuals and/or parents with navigating a world that is not always welcoming of difference.

I’ve come up with this handy-dandy three point list to summarize the key aspects of advocacy as I see them, after almost a decade of advocacy:

1. INSIST!

2. PERSIST!

3. EXIST!

...And now for a little elaboration:

1. By INSIST, I mean, to go with what you know is right, whether anti-bullying or pro-services and –adaptations(–accommodations), whether at school, at work, in the larger world...Oftentimes you might not even know what the law or rule or adaptation/accommodation or service or policy is...but you know in your heart that you or your child deserves better. Is your or your child’s neurology, sensory profile, or other difference significantly impacting or impacted by your/their school (or work, or...) experience? Then something needs to change. Part of this step is finding out what can be done – finding a way to make things better – and then INSISTING upon it.

2. By PERSIST, I mean: don’t give up.  Sometimes our efforts at advocacy are flat-out exhausting. Sometimes they don’t help us or our children but they help others down the road (laws, do I have examples of this). If possible, keep trying: sometimes it might just take one more call, or google search, or email to another parent or a friend to push things over the line to full or partial success. Yes, there are a lot of things working against progress (on both smaller and larger scales), but there are good guys out there, and rules and laws that are meant to support equality and fairness...we as individuals can make a difference in the creation of and changing of attitudes and laws, too, but it takes time. PERSIST, dear reader, and find these people and these policies (or be/create them!) and let’s level the playing field!

3. By EXIST, I mean: you are a person! Yes, you! Take care of yourself. I don’t do this. None of us do. But we should. Especially when the world needs MORE from us, and we feel we’ve Nothing left. Sleep. Good, nourishing food. Taking a break sometimes and just reading or going for a walk...Am I ringing a bell here?

Life can sometimes feel like a roller coaster, all the more so when you and/or your child has/have atypical learning styles and/or neurology and/or abilities. When I contacted G’s case manager* to review his grades from the depths of a reasonable yet debilitating funk, she responded on that subject and then, later, sent me this:

I forgot to write it in my last email but...I have been meaning to let you know how amazing [G] was during his Socratic Circle in English class with [teacher]. He related the poem 'Kindness' to his negative experiences in [pre-move, reason-we-moved, elementary] school with bullying and was able to speak to how it made him understand kindness more. He also said that because of this experience he has become a more compassionate person. I was so impressed and moved by his thoughtful input. He was serious and thoughtful. It was just wonderful!

...This email kind of made up for the other disastrophes that week, my point being: take joy/comfort/light where you can...you may need it! Seeking out and really listening to those who recognize/acknowledge/celebrate your or you loved ones’ real gifts are a part of self-care and feeding of the soul.

You know – roller coaster alert - I had mixed feelings when this (very kind and hard-working) case manager* subsequently told me that “[G] could be in an advanced language arts class if not for his issues with organization and writing.” I mean...what’s not happening for him at school that you are not helping him enough with these very issues (learning differences [a.k.a. disabilities – the language we choose is part of advocacy!]) to realize his potential??? Wait...It’s time to advocate...Ciao!

Next Anniversary List: FOURTH ANNIVERSARY LISTS II: ATTACHMENT DISORDERS.

Love,

Full Spectrum Mama

* Ok, “Case manager” makes my son sound like a “case.” Yuck. Note to self: another advocacy goal for when things slow down....??

**The fact that G is on the basketball team is a subject for at least seven or eight future posts, which I will likewise write when the proverbial things slow down...

BOUNDARIES

“F*cked up people will try to tell you otherwise, but boundaries have nothing to do with whether you love someone or not. They are not judgments, punishments, or betrayals. They are a purely peaceable thing: the basic principles you identify for yourself that define the behaviors that you will tolerate from others, as well as the responses you will have to those behaviors. Boundaries teach people how to treat you and they teach you how to respect yourself.”

Cheryl Strayed

Dear Persons,

Boundaries keep us healthy.

Boundaries can be any shape (including partially open), thick, thin, obvious, subtle, situational, universal, expressed, internal, pleasing and convenient for others– or not, ordinary, extraordinary, permanent, flexible, temporary,...Boundaries can and should be of any type that promotes our health and healthy relationships. Boundaries consider and encompass ourselves and others as PERSONS.

Figure I – Visual Rendering of a Full Spectrum of Boundaries

A lack of boundaries finds an interesting overlap between neurodiverse people, who, for a variety of reasons, may be unaware of the possibility/necessity of certain boundaries, and unhealthy-to-toxic families, where vulnerable members (such as children, or, sometimes [and by no means only], women) may be abused or exploited partially because of weak or nonexistent boundaries in the family dynamic.

People who desire full health can learn about healthy boundaries and enact them. This can be challenging, especially at first, because new routines and behaviors always are (hello, transitions!), but also because sometimes others may take boundaries as a personal offense, or as selfish, or a burden.

Refer those chumps to the above quote. .

Basic well-being in life also embodies healthy boundaries (eating habits, personal safety, fitness...). For people who are highly sensitive, people with sensory processing differences, and people on the autism spectrum, among others, healthy boundaries may further include a diverse range of choices, such as:

* Not shopping at big box stores (this may hold, too, for people who have boundaries around consumption, or around economic ethics regarding working conditions of employees and/or manufacturers);

* Limiting the number of steps in any set of instructions, whether at school, work, or home;

* Allowing fidgets, pressure devices, what-have-you to be integrated in the classroom or workplace;

* Limiting or specifying social interaction;

* Avoiding fluorescent lighting, certain smells, loud noise, crowds....

* Finding mutually satisfying means of communication;

* Choosing clothing, food, etc. that does not hurt, distress, or irritate us;

* Deciding the conditions under which we will choose to share our unique circumstances and needs...

We have the inherent right to deduce and determine what feels safe, healthy, and appropriate in our lives. We can and should ask those who value our mutual health and relationships or who are charged with our wellness, working conditions, and/or education (and/or the education and/or care of our children!), to honor those boundaries.

Incidentally, healthy boundaries also allow us to more abundantly exude and take in all the good stuff.

Figure II – 

Person with Healthy Boundaries Enjoying The Good Stuff

I never knew all this; that’s why I am sharing.

Love,

Full Spectrum Mama

[EDIT, 1/13: My dear online friend Kmarie  Audrey posted this deeply thoughtful and interesting post after reading the above: 
http://worldwecreate.blogspot.com/2016/01/boundaries-christianity-grace-and.html]

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

WINTER LIGHT: ALL IS CALM, ALL IS BRIGHT

As the days lengthen, though many of us are in the deepest part of winter, may we all seek to spread a Full Spectrum of acceptance.

May we celebrate and embrace our differences, advocate for ourselves and others, and live our lives as superheroes - vanquishing intolerance, ignorance, oppression...any force or person or group who tries to keep their fellow beings down or hinders their shine!

May we glow with engaged, empathetic love.

May we wisely understand that in light, ALL colors are contained – just as all shapes, sizes, abilities, neurologies, sexualities, ethnicities...make up the whole of our world.  

Oh, and may we each and every one be blessed with a heaping dose of perspective.

Wishing you warmth and health in the New Year, with much love,

Full Spectrum Mama