Thursday, January 29, 2015

EXCUSES, EXCUSES…

Dear Readers,

The Full Spectrums are moving. Given that we are a gang with a lot of feelings, a lot of stuff (where did it all come from????), and sensory and behavioral differences, there is PLENTY of “writing material” here. However, time to actually write is nonexistent, not to mention my pronounced lack of the necessary mental and physical energy for anything beyond the basics of mothering, my work, and moving.

Please bear with me while I post much, much less than I would like…

In just over a week, I will be publishing a Sensory Blog Hope post about face-blindness.

After that, as soon as possible, I will be writing my next Third Anniversary Post, “Choosing Your Battles.”

Love,
Full Spectrum Mama


Wednesday, January 21, 2015

Third Anniversary Lists II: Attachment Disorders

[I apologize, again, for weird formatting - it seems to be stemming from my blogger template and I cannot seem to fix it without causing more problems...:( ]

During the bus portion  of the second leg of our mainland China adoption journey – from Nanchang Airport to Nanchang City – our guide, whom we called “Rose,” stood up in the front of our bus and announced “Girls from Jiangxi province are known for being beautiful. Oh – and your daughters are going to be VERY SPICY!”

Now, I don’t know so much about how little Ashley, Brooke and Jade turned out…And from what little I know they seemed to be coming along quite mildly…But I can assure you that Z [whose original Chinese name we kept] is most decidedly “spicy.”

The other day, she asked me, “Mama, why am I still so angry from being in an orphanage when that was so long ago?”

“I think part of it is that you are a really smart kid, who had a lot of feelings even at a very young age,” I told her, “and I think part of it is that you naturally have a strong temper!”

As with autism, if you’ve met one kid with an attachment disorder, you’ve met one kid with an attachment disorder. My Z would probably have been “spicy” no matter how she grew up. Still, some things tend to be shared by people who have attachment disorders, such as certain types of behavioral issues that may be otherwise uncommon. Attachment disorders in children often necessitate therapeutic parenting, which looks very different from “normal” parenting -- and was, for the Full Spectrums, a MAJOR revelation.  I’ve written every year on this specific topic to share our experiences and what we’ve learned. Here are the past two posts on this subject:




Here are some details on the three main strategies for attachment disorders that I have tried over the past year, restoring omniscience, channeling and venting:


  1. RE-ESTABLISHING OMNISCIENCE

To demonstrate the importance of this strategy, I offer this anecdote:

Full Spectrum Mama, having found Z in possession of something of questionable origin (i.e. not from known source and never seen before by FSM): “Where’d you get that?”

Full Spectrum daughter, Z: “In my room.”

FSM: “Well, I’ve never seen it before. So I am asking you where it came from.”

Z: [Blank.]


It’s that moment when your kid realizes you Don’t Know Everything. That moment gets more loaded when your child has an attachment disorder and the typical attachment disordered tendency to…appropriate things. LOTS of things.

The worst part of the blank non-reponse is, as several loved ones noted: Why not a better story? Something along the lines of “Someone gave it to me,” or, “I won it at school.”

Why not? Because I don’t even merit that! Anyway, she’s known for some time that if she gets too specific, her story may be refuted (see, most recently, new rhinestone hair-doodad collection, courtesy of “Ayi Fern”…”No! Full Spectrum Grandmother!”...”No…”).

Hence; “In my room.”

Back in the day when I could be convincing in my omniscience I was able to coax the truth out of Z. Then we could make things right by returning things whence they came and making amends. I would say, “In five minutes, I will give you a chance to tell the truth about that,” and, in five minutes, she would. Then we would figure out a solution.

We are entering a new realm now.

I have only one hope for a way out without getting professional help: RESTORE OMNISCIENCE. Just today, Z asked me, “Mama, can you fry stewed meat?”

“Why on earth would you ask me that? You know I am vegetarian…Oh, wait…because I…know everything?”

The response was something between an eye roll and a nod.

Sigh. I’ll be…in my room.


So let’s say OMNISCIENCE isn’t happening right now. What are some alternatives?


  1. CHANNELING
This may be a bit trial-and-error, but I have found that CHANNELLING disordered behaviors, especially compulsive ones, can be very effective. The idea with channeling is to replace a disordered activity with something more healthy and pro-social. You may have to try a bunch of alternatives before you hit upon one that works, or you may just get lucky! I wrote about one major 2014 success in WADS. 


  1. VENTING
Not long ago, Z was on an extended tear of “zesty” behavior: constantly testing, pushing, on edge…Having some experience with these cycles, I was able to keep her adequately on point, but only barely – and it was exhausting. As I have written in previous posts on this subject, boundaries are key; as I learned from our therapist, who specializes in attachment disorders, even small boundaries must be held in order to keep attachment disordered fears in check. So basically I have to be holding my ground on every little thing as she, typically, gets increasingly relentless…It’s not the most pleasant scenario.

Anyway, after a few weeks where I could sense Z was struggling quite a bit with something, she got angry (I don’t even remember what about) and stomped her foot and had the most comical expression on her face that I laughed when I looked at her. She became furious and stomped up to her room where she began to rage and throw and break things and scream ceaselessly for some time. After which she emerged, apologized, and has remained pleasant ever since.

I am not trying to advise you to send your child around the bend by teasing – which I did NOT mean to do! – just advocating for the occasional recognition of a tantrum as, perhaps somewhat paradoxically, a potential healing tool. The occasional VENTING session can be extraordinarily cathartic.


Next in the Anniversary Lists Series: Choosing Your Battles!!!

Love,
Full Spectrum Mama

Friday, January 9, 2015

Third Anniversary Lists I: Advocacy

Over the last few years of navigating institutional systems (schools, camps, after-school activities…), I’ve come to see that advocacy takes many different forms. Here is a list of several types of advocacy and some of the key tools for success in each:


  1. The Long-Term Success/Short-Term Failure:
Sometimes, you might fail in your efforts on behalf of your own child…but achieve some success on behalf of future children in a given place or institution. I had one such experience this summer, and it was one of the most painful of my life. I haven’t been up to writing about it yet, and so will just say that I removed and protected G from a discriminatory situation and called the institution out on its very large mistakes in handling the whole situation. It took me a long time to get results, and I had to go to the board because the administration itself was astoundingly unresponsive, but I don’t believe any other family will have to endure what we did at that particular place again.

                KEY TOOLS:
                       a. Perspective
                       b. Long-Term Vision


  1. The Learning Experience:
Sometimes past advocacy gives one tools to share with other parents who might not be as experienced in advocacy. Over the last year, I’ve had several people in my area come to me or refer others to me for help with advocacy. It’s not that I am some “expert” – but I do have by now quite a lot of practice. Little things like remembering to scrape the cat hair off your clothes, or arm yourself with some vocabulary, can make a real difference in advocacy.

Another really huge thing is not feeling alone. 

                   KEY TOOLS:
                             a. Time (haha)
                             b. Ability to Listen, Commiserate
                             c. Ability to Share Knowledge / Research / Resources

[>>>EDIT: I apologize for poor list formatting. I am sure many of you can relate to the agony it causes me that the more I try to fix it the worse it gets. Something funky in my blogger template?]

  1. The Mixup:
Oftentimes, advocacy becomes necessary because a situation is misunderstood. People, especially children, perhaps most especially those with differences - such as my autistic son, G - may have a hard time articulating what they are feeling or what they have experienced, especially under pressure and/or with authority figures.

Mixups may necessitate Social AND/OR Academic Advocacy.

Here is something in this vein that happened this fall: G got suspended from his school-sponsored after-school activity for punching two boys. It seemed to the school like he was the “bad guy” in the interaction, in both the phone call and the serious letter I received.

But I know my son. He’d NEVER been violent before. So I asked him some key questions, you know, starting with a simple “What happened?” It emerged that these two boys had been teasing him for the last few weeks and he’d finally lost it at the moment when one of the boys was writing “[G] is a blundering idiot” on the blackboard.

I remembered that he’d told me some kids were teasing him, but hadn’t felt it warranted a talk with the teacher since G hadn’t seemed to be very upset and I assumed he would handle it himself with the IGNORE method we often discuss…Over the week in question, the teasing had crossed the line over into bullying. The leader of this after school activity – who, it turned out, was a high school student – had clearly been in over his head with this bunch of zany boys playing Pathfinders (for my fellow old fogies, that’s basically the new version of Dungeons & Dragons).

SO, what I did: I wrote the head of the program as well as the school principal and vice-principal explaining my child’s perspective and giving them some context. I acknowledged that hitting is never, ever acceptable and assured them that I supported their stance on violence and would speak firmly with G. But I also I asked that the other children be spoken to as well, and possibly suspended from that same activity for their bullying behavior. I asked that they ALL recognize that this was not a situation where a violent kid bullied others, but one in which a non-violent kid was pushed too far for too long. I think they got it, but only after my G had been labeled as violent and suspended from the program, which did have some impact on him.  However, with Mixups, there’s always that initial…Mixup.

Here’s a different example: G was failing math, his best subject, this fall. I worked with the teacher and with G and we were able to figure out that he was doing his assignments but not turning them in.  We adapted his homework assignment protocol to include turning things in immediately upon completion rather than waiting until the next class. Mixups usually have solutions…if people will speak out – and listen!

                   KEY TOOLS:
                            Detective Work:
                                                       a. Finding Out What Really Happened via  
                                                            Asking      and      Listening,
                                                        and then 
                                                       b. Finding Out What Can Be Done,
        and then 
       c. sometimes Fighting for What Can Be Done to
                                                       d.  Actually BE Done.


  1. The Temporary Fail:
Sometimes, advocacy fails, at least initially. We do have resources when this happens! There are lawyers and organizations that specialize in special needs advocacy, but sometimes other parents or people who share your or your child’s difference can be really great at figuring out options.

                   KEY TOOLS:
                            a.  (Internet & other) Research
                            b. Legal Aid Organizations
                            c. Community (including online! For many of us, that’s the
                                           most viable option…)
                            d. Local and National Advocacy Organizations
                            e. Word of Mouth

  1. Success!
I’ve written in the “Process, Represent, Toot” link below about my fight to keep G’s IEP in the fifth grade. It was a doozy – but those of us who were on the kid’s team won. In my experience, the most common and daunting obstacles to students receiving the help they need are budgetary. Schools are required to “provide a free and appropriate public education” to all students. Those who don’t fit the cookie-cutter mold of the average student (and I would argue that percentage is very high) are harder to educate because they require Individualized Education, which is more costly! A formal IEP (Individualized Education Plan) obviously costs districts much more than warehousing “average,” “normal” students with one-size-fits-all teaching.  So, naturally, they want to – or HAVE TO - minimize the proportion of students served thereby.

That’s not to say you won’t encounter people who want the best for a given student. I have personally seen a teacher put his job on the line for my son. It’s just that this system makes it more likely you will have to advocate for your child or yourself. Start by being there -- as often as it takes. In addition:

                                     KEY TOOLS:
                                               a. Knowledge
           b. Confidence (Fake it if you need to! But remember: YOU
are the EXPERT on your child, the one who knows most intimately what he or she needs to succeed. 
c. Persistence -- Keep at It         
d. If possible: Enlist Other People

  1. Self-Advocacy:
Things ARE changing. Not fast enough! These days, we ourselves and our children are learning to know ourselves as equal, to know our own individual strengths and weaknesses, our quirks, gifts, and challenges…As knowledge around neurodiversity spreads, there’s more respect and acceptance for all.

I recently had a long talk with one of my students whose daughter sounds like she has sensory processing differences. I was telling this mother how it felt to be spectrum-y growing up in a world with ZERO awareness and how NOW her daughter will have so much more understanding and can learn to advocate for herself...

Just yesterday, I said to a friend, perfectly casually, nicely, “My brain is full and I can’t talk to you anymore.” She totally got it. That never would have happened ten years ago. Those of us in neurodiverse communities are openly telling our stories more and more; we are feeling increasingly comfortable advocating for sensory adaptations, executive function aids, acceptance of tics, flaps and awkwardnesses…ADVOCATING for What We Need.

Of course discrimination is still an issue, as are many aspects of living with disabilities and differences. With sharing our voices and teaching our children and ourselves how to Self-Advocate we can continue to grow a world where acceptance and equality prevail.

                     KEY TOOLS:
                             a. Self-Awareness
                             b. Willingness to Grow
                             c. Conviction
                             d. Ideas for Adapatation(s) (I prefer the word “adaptations”
to “accommodations,” which sounds to me like somebody is doing somebody a favor)



Here, gleaned from commonalities among the above genres of advocacy, are what I see as  THREE MAIN TOOLS FOR ADVOCACY:

1.      HELP YOURSELF (whether to help yourself or someone else) – Do the research so you know what’s legal, appropriate and possible.

2.      FIND and IDENTIFY ALLIES -- and ASK FOR HELP.

3.      KEEP TRYING – Don’t give up. Or, at least, if you do need to give up, don’t give up forever. Take a break! Build your strength and hope and, when you are ready, resume advocacy.  


Good luck, my friends!

Love,
Full Spectrum Mama

P.S. For more posts on Advocacy, please check out:
           



Monday, December 29, 2014

THANK YOU AND GOODBYE, 2014

We just found out we missed the Lowbrow Art and Crafts Fair in nearby Western Massachusetts, where we could have found stuffies that grew out of [name withheld]’s “desire to create a stuffed toy that wasn’t striving for a contrived sense of happiness.” Apparently, such stuffies “let you sit with your feelings.”  2014 has been quite a year for the Full Spectrums, replete with a Full share of disastrophes, laffs, triumphs and “dharma gates"...those stuffies would have sure come in handy...

Welp, even without custom Full Spectrum stuffies, 2014 has been a lot about learning to feel our feelings as a family. For the spectrum-y Spectrums, we are learning to sort and identify what our feelings are, and how they actually feel – in our bodies and minds. For the growing spectrum-y Spectrum, G, we are working on finding the perfect balance between teaching pro-social habits (blowing nose) and **not** teaching him to assimilate as neurotypical. Balance for Z, who has needed stringent rules and oversight for attachment-disordered behaviors, has included progress toward being safe with making some of her own choices, while still feeling held in strong boundaries.

2014 has been an exciting year for this blog, too. Readership doubled (up to 30,000+!), comments have been lively, and  the Sensory Processing Disorder Blog Hop is a hoot and a comfort. I was awarded a funded residency at the Vermont Studio center in 2014, which I was unable to attend because of a lack of childcare; in 2015 I am hoping to be able to attend the Studio Center’s only shorter (one-week) program. I’m excited about beginning my Third Anniversary Post cycle in early January with THIRD ANNIVERSARY LISTS I: ADVOCACY, to be followed by II: ATTACHMENT DISORDERS, III: CHOOSING YOUR BATTLES, and, IV: THE COMPLAINT DEPARTMENT.

I will be accepting COMPLAINTS at my email address, jineffable@gmail.com, until late January.

Wishing you a jolly, healthy 2015,
Full Spectrum Mama



Friday, December 19, 2014

THE MATURE HARD TIMES ALTERNATOR

I recently became aware of an extension to an earlier hypothesis around the distribution and amelioration of Hard Times. This revelation came about during a moment where it was all I could do to keep my sanity because waaaaaaaaaaay too much stuff was going down. In the presence of my children, I had a major – and, apparently, noticeable --  lapse of my usual Momveneer* of steady competence and cheer – and Guess What!

The kids could actually handle it.

G, usually happily – to his mother, scarily - devoid of Executive Function and Mundane Practical Concerns/Attention, became suddenly attuned to things he’d never seemed to even register before: “Mom, don’t you need to put your turn signal on here?” he asked, to my utter astonishment (filtered through a murky haze of despair). “You seem like you are not focusing,” he told me a few minutes later. “Do you need to take a break?”

Meanwhile Z, who is not known for being forthcoming about her intentions or actions, became crystal clear, meticulous and solicitous: “May I get a glass of water?” (My reaction, percolated via a thick fog of dejection: HUH???) “May I get you a glass of water too?” “How are you doing, Mama?”

It gradually dawned on me that what I was experiencing was a manifestation of The MATURE Hard Times Alternator. I had been well aware of the machinations of The Hard Times Alternator (THTA) in my children, but did not know that it was also potentially a major player in any Full family dynamic. Adults are usually a peripheral factor in the HTA equation. I hadn’t realized grownups sometimes – however momentarily - merit this sort of ethereal (yet, when necessary, child-incorporating) intervention!



Figure I – The Mature Hard Times Alternator in Action, utilizing the

This flare-up of The Mature Hard Times Alternator is not something I would want to incur too often. I like to let my kids be kids, and I think some of their response was out of anxiety. Plus, that sort of disastrophe pile-up is not something I’d like to endure with any frequency. It was nonetheless liberating and reassuring in the way it revealed the junior Full Spectrums’ potential capabilities -- and to see them step up when called for by TMHTA.

This holiday season, may your HTA in be in good working order; and may your MHTA be at the ready…should that by any chance become necessary.

Love,
Full Spectrum Mama


*Veneer! I said veneer!



Tuesday, December 9, 2014

SPD, ASD, ABC, DEFD....


Please note: this post is part of the Sensory Blog Hop, which is sponsored by the fabulous Jenny (what a great name!) over at The Sensory Spectrum and The Jenny Evolution. I accepted the invitation to participate as a way to get more exposure for FSM, but it has become a wonderful, inclusive, helpful community for all us SPD Blog Hoppers. Please do click on the links below for fresh and inspiring perspectives and meet some very worthwhile new pals.



When my little fella started seventh grade this fall, I very nearly had a nervous breakdown

However, it seems to be going very well..socially...which is...a surprise.

And then there are his grades. Which are terrible.

You see, his ASD and SPD are a big part of his DEFD and this causes a decline in his ABCs.

Get it? No? Please allow me to break it down:


ASD officially stands for Autism Spectrum Disorder. I don’t like “Disorder,” so I end the phrase with Difference. G is on the Autism Spectrum. He’s autistic in the way that used to be officially called Asperger’s.

Among other things, this means G has challenges in the social realm.

SPD officially stands for Sensory Processing Disorder. I do the same here, calling it Sensory Processing Differences. G has sensory processing differences, as most people on the spectrum do, as many people in his biological family – including me – do…

Among other things, this means that G is extraordinarily neurologically and sensorially sensitive in certain ways, while in other ways he may seem “undersensitive.” Put another way, the systems of people with SPD tend to pay more or less attention to feelings and sensory input than is “normal.”
Each person with SPD is different. (Sometimes when one area seems “undersensitive” it is because an individual with SPD is already overwhelmed from “oversensitivity” in another area!)

DEFD stands for Determinants of Executive Function and Dysfunction. Executive Function – the ability to process and enact a series of thoughts and actions in an effective way -  has never been a strong point for G. This fall, his already low levels of EF took a major dive.

So did his grades – his ABCs, if you will.

The way I see it, these acronyms and what they represent in my G (and others) are all intimately connected: Each person has a given amount of energy. When it takes More energy just to function socially, resources available for other aspects diminish.

I figure there’s only so much G to go around, and, currently, it’s almost entirely being utilized in this area of Social Skills -- which has been a lifelong challenge for him.

                       Figure I – Allocation of Energy Pie Chart                



He's enjoying seventh grade (?!)  – and “extremely popular.” I should note that from what I can see and from what G tells me (limited!) this all seems to be happening on G’s terms, that is to say he is popular and liked For Himself, the quirky and brave kid that he is [sniff!].  Given this turn of events, I pooh-pooh EF and the desire for As (…and Bs…).

For now.

Love,
Full Spectrum Mama







Tuesday, December 2, 2014

THE COMPLAINT DEPARTMENT

It's that time of year when some of us lucky chums begin to feel more complainous.

What's that you say? Any time of year is a good time to feel complainous? Why, that's why Partial/incomplete Monochrome Persona (PiMP) and Full Spectrum Mama (FSM) have teamed up to create that handy dandy button over there on the right so that any time can be a complaint time.  

However, the “holiday season” can be quite grim. Knowing that your COMPLAINTS will be complained in a timely fashion for our annual COMPLAINT DEPARTMENT anniversary guest post -- with all the flair of PiMP! -- might be Just The Thing to ease your holiday woes.

This year, we at TCD continue to accept Junior Complaints, Short Complaints and Long Complaints, all to be suitably complained. Acceptable COMPLAINTS may be funny, whiny and/or dire. Please send all COMPLAINTS to jineffable@gmail.com.  

All this is not to say, as per usual, that TCD is open.  Yet somewhere…far, far away…lies the always-accepting, ever-enduring, firmly-shut COMPLAINT DEPARTMENT. You may be assured of that, alrighty.

Sincerely,
Partial/incomplete Monochrome Persona
Factotum, THE COMPLAINT DEPARTMENT
Guest writer/Troubleshooter @ Full Spectrum Mama