Showing posts with label help. Show all posts
Showing posts with label help. Show all posts

Tuesday, June 12, 2018

HAVING IT BOTH WAYS

Dear Persons,

I had an argument with myself yesterday.

I was thinking about this whole process I'm beginning for setting up G's future.

How I want him to have all the support he needs. And all the respect.

If you’re reading this, you probably have your reasons for doing so — and you probably understand some of the paradoxes of living with difference.

But yesterday my critical self — representing both a certain logic AND people who just don’t get it — accused me of trying to have it both ways.

I want G to have a safety net and scaffolding that will help him stay healthy and on point with his studies and/or work. That means federal, state, local, community, and family resources. And it means I will advocate and fight for these resources…

I will do so even as I believe in his capacities to thrive, succeed on his own terms, and even excel on a  wider scale — and will also advocate and fight for his equality on every level. 

He’s autistic and he’s brilliant. Partly, he’s brilliant because he’s autistic. Yes, without pressure he might never clean his room or his body again; yes, I hope someday that won’t be the case. But do you need to know anything — anything at all —  about birds, Pokemon, ‘90s punk funk, or Magic the Gathering? 

He doesn’t self-regulate vis-a-vis screen, sleep, food, etc. and he doesn’t self-regulate being friendly, loving, corny, and generous. For the foreseeable future, he will continue to need sensitive and wise supervision in a lot of the basics. But do you need a hug, a smile, a laugh, someone to look at you with eyes and heart utterly devoid of judgment? 

Think of all the ways people without extraordinary differences are helped out by other individuals and institutions, from federal poverty programs to local business initiatives, from recovery groups to the uptick in adult children living at home. We all need help! 

But being different is complicated. The types of public and private assistance that are commonly available are often predicated on being unable to do things that people “should” be able to do. Well, I’d like to note (not for the first or last time) that our G — like so many of his fellow “non-typical” people — can do a lot of things that not just anyone could.

Because society is the way it is (have you heard of the social model of disability?), he will need and deserve plenty of support and scaffolding if we are going to find out what he is truly capable of. At the same time, he will need and deserve a lot of respect and encouragement. All of these needs are valid and worthy because he's a disabled/differently-abled person, a twice-exceptional individual…a complex, complete human being.


Figure I - Valued Contributing Member of Society 




Figure II - Person Whose Needs are Valid and Worthy 


My hope is that G can be sustained by his environment in such a way that he can use his unique skills to become a valued contributing member of society. If that’s having it both ways, so be it.

Love,
Full Spectrum Mama






 
Welco
me to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!



Wednesday, August 20, 2014

MIDDLE SCHOOL* PRAYERS**

(SUBSTITUTION POLICY:

Please feel free to change the terms of any of these prayers** if they feel useful to you! For example: *“Middle School,” might become ANY school or institution or event or transition; **“prayers” might become wishes or hopes or a more formal type of prayer…

This post comes out of our Middle School Special Education Transition Orientation meeting, in which most of the parents were crying – and shared many of these concerns; it also comes out of my own fears about this transition; and from a few things G – who’s playing it mellow on this one -- has said. But I think the generalities and specifics may apply in a lot of situations.

I open with “Dear Universe” because it seems most inclusive and I love how the literal translation -- “one song” – includes and unifies this big ol’ glorious mess of a world. Please substitute God (however you mean this word, or whatever word your faith uses), or any other concept here, including “Dear me, may I do my best to ensure that…”)


Dear Universe,

May our children have a gentle transition to Middle School. Specifically,


1.      May they not succumb to the horrors of Homework –

a.       In the DOING of the Homework, may they not find it such that it is “the last straw” in a day in which there have already been enough struggles to succeed, often in areas of extraordinary challenges,  whether social, academic, emotional, neurological, physical...

May they have time, still, to be kids. May they have time to play with their families, rather than always trying to “catch up” on all these many levels – and rather than their families having to spend most of their time together waging mighty battles in the effort to compel our children to complete said Homework.

May you uplift the brave Mama of the Middle School Special Education Transition Orientation meeting who saw fit to refuse to force her child to do Homework because she chose, instead, to let her child have fun following her child’s very, very hard work during the school day.

b.      And, Dear Universe, even more specifically, in the matter of the KEEPING TRACK OF the Homework, may we all gain skill and patience in this area, for  it is immeasurably harder to get kids who are already at their limit to bring home extensive and organized information about assignments.

While we may take advantage of online and phone resources at the Middle School, may that extra step send neither we nor our children “over the edge.”


2.      May our children be undaunted and unbowed by the rigors and pitfalls of Physical Education --
.
a.       May their PARTICIPATION be unmarred by being always last chosen and barely tolerated…May all games be inclusive – and may the choosing of the teams, if teams there be, occur by fair and just and random means.

May the words of the outgoing principal at the Middle School Special Education Transition Orientation meeting, “We think it’s important for all students to fully experience this social, competitive aspect of middle school,” have been misspoken, for, when they were spoken, you, O Universe, could hear the air go out of the room. You could hear, surely, the thoughts of the people of the Middle School Special Education Transition Orientation meeting and they were: Compete? Really? Some of our kids can’t catch balls. That does not make them “less than,” but listen lady, for most of us P.E. is not gonna be a strong suit for our kids…

b.      May the new ritual of CHANGING for P.E. be less agonizing and costly than we expect. Please watch over our children as they attempt to tie their shoes, maintain a modicum of executive function, not lose EVERYTHING, put on and take off the right clothes at the right time and in the right order, not stare inappropriately, and so forth.

And, lo, though they may not succeed in these efforts, may they nonetheless not get teased in the locker room for these or any of many other possible reasons…:

1.      In the matter of our kids’ UNDERWEAR, may you ensure that nothing too awkward or inappropriate happens during the aforementioned change? Please? One parent asks, as she did of me yesterday, may we ensure that my child does not have little kid underwear on? Also, may the underwear be pulled neither way too high nor way too low? May G, for example, not wear his underwear backwards and in a total wedgie as he is generally wont to do?  

We are not asking for a trade, Dear Universe, but we do agree to do everything in our power to make sure these risks are minimized, such as the pre-departure underwear check; it’s just that the locker room itself is out of our hands.


3.      Bullying. Universe, You know this is a HUGE one for those of us with differences and/or with children with differences!

a.       May our children not BE BULLIED.
Yes, Dear Universe, we know that Middle School is the world epicenter of bullying, and we know that kids who are different get bullied MORE …yet we dare to dream that our prayers that our children not be bullied might be answered, whether by a zero-tolerance school environment, social skills classes, that one cool kid is who so cool he or she doesn’t need to shun someone who’s “weird,” some combination of these, etc.

MAY NO CHILDREN - ANYWHERE - BE VICTIMS OF VIOLENCE FOR ANY REASON, O Universe. And may this particular prayer be as unnecessary as it should be, rather than as ridiculous and unrealistic as it actually is. 

b.      May our children not be misperceived as BULLYING -- or pushed into BULLYING by peer pressure or anxiety, or by being BULLIED:
There is then the type of scenario where our kids act in ways that appear to be bullying when in fact they are just clueless…and sometimes, like my G, really large and intimidating despite being a gentle and loving lambikin.

And there’s the scenario where someone who is already struggling is forced over their sensorial or social tolerance limit to a point where they lash out in what feels like self-defense.

The overall high levels of social awkwardness and hierarchical jostling that accompany this transition make these kinds of mixups more likely and we pray, Dear Universe, that our children be kept safe from these dreadful possibilities.


4.      May the issue of varying levels of Maturity – Or lack thereof -- …combined with hormones…oh dear.

May we somehow help our children navigate this particular minefield with aplomb.

Or at least a minimum of outright disastrophes.

G and his peers on the autism spectrum may by definition have developmental delays and those, combined with certain physical developments, make for a complicated mix.  Other non-spectrum-y kids in Special Education may have similar issues, including challenges around judgment and impulse control.

Heading into a context where almost everybody is a seething mass of hormonal, social and mental changes will be…interesting at best.

Dear Universe, you’ll recall when I was a VERY young 12. Curious about sex, hormonal, but very, very innocent. G is similar, but, if it’s possible, even more oblivious. What G lacks in commonsensicals, he certainly makes up for in heart-of-gold, but I am not convinced this combo will serve him well for the next year or two.

Therefore, in your infinite wisdom and harmony may you at least try to help him and the rest of our children entering Middle School to not embarrass themselves unduly.

Please watch over our children and prevent them from seeming to be stalkers. 

We beg - beg! - that you not let them be taken advantage of. 

Also, please see that the age of their bodies and the age of their minds and emotions correspond at least slightly, both within their own beings and amongst their friends.

And may they find friends, O Universe. Even just one friend. One who doesn’t care if they still like playing, for instance, pokemon.


5.      May our children operate their Lockers –

Dear Universe, can you see our kids being really great with the whole locker thing? The whole make way directly to locker/remember the combination/get the thing (or things) that was needed from locker and/or place the thing (or things) that was no longer needed in locker/close locker/find way back to where supposed to be thing?

Yeah…no. We can’t either.

Well what about the part where someone goes with them and oversees the whole thing – we’re so sure that will go over great in Middle School. Not.

Or maybe we could give them a list of the above steps to follow (read: give them a list to lose on the first day of school)?

Dear Universe, can you please O please manage this one somehow for the sake of our dear children?

Because this is one where our fear is mighty and legit, albeit probably incomprehensible to some.


6.      May our children learn Self-Advocacy –

For we are not omnipresent – and we are sometimes, we admit, exhausted. As well, mortal.
           
If possible, may they begin to integrate, for themselves, some components of self-advocacy development, however small, however basic: what questions will I need to ask to complete this assignment? Where will my challenges be and how can I access the help I need to be successful? What are my rights and responsibilities -  here, now?

If possible, may their Executive Function improve such that they are developing in awareness of what they need and how they may best be served in their own actions and in the resources available to them…

And, whether or not our children are mainstreamed or in more specialized programs, semi-independent or not-,


7.      May the help they are given be Helpful and not Non-Helpful –

Over the years there have been periods where I would begin to see some or all of G’s work and assignments written out in someone else’s handwriting. Dear Universe, as you are no doubt aware, G is able to write. Does it take him longer to write something than the average student or adult paraprofessional? Yes. Does he have dysgraphia and other learning differences around writing? Yes. Yet having someone do all his work for him is unequivocally NON-helpful help. I suspect the paras in question were trying to be kind, or to speed things up, make things easier for all parties…In any case I know they were not intending to deprive my son of a learning opportunity. But that is just what they were doing.

Dear Universe, some of us fear that in the larger Middle School context, it might seem easier to just sort of pass our kids through the system, using precisely this sort of non-helpful (to our children) help. This would be a great loss for our children.

May our children instead benefit from Flexible Support, where sensitive teachers and helpers recognize when help is truly needed but pull back to allow students to fly on their own where they are able to fly; sometimes, when necessary, fluffing up their feathers and wings, and, the rest of the time, letting students make their own, probably imperfect but unique and rewarding flights…

May we, the staff, their peers, and their teachers balance our children’s overt needs – for security, for routine, for “success” and success – with the myriad of wonderful possibilities for new experiences and learning out there in Your Universe, Dear Universe.

Big thanks.

Love,
Full Spectrum Mama


Wednesday, January 30, 2013

First Anniversary Lists IV: The Complaint Department


Our Guest Writer, Partial/incomplete Monochrome Persona from The Complaint Department, has been working hard to bring you this list.  Warning: Partial/incomplete Monochrome Persona, or PiMP for short, has compiled and macro-infested the bitterest and snarkiest elements of Full Spectrum Mama’s first year, many of which Full Spectrum Mama might not even have noticed, saintly as she is.



1.     The Make-Your-Own-Problems Division.

We make most of our own problems. The Complaint Department suggests you unmake – or contend gracefully with – such self-created problems.

Therefore, The Complaint Department maintains a strict non-acceptance policy in its Make-Your-Own-Problems Division.

2.     Bullies.

Yuck.

Can you believe bullies are real? Grown-up bullies, too! Solo-style, as well as Group Models, including Mean (Old) Girls (and Boys), Institutional and Family-Pak…

Children who bully often learn to do so at home. Watch out for their parents.

Those in the school-disability-“special education” worlds who bully often do so from budget and staff frustrations. See if you can get through the armor to the love of children that brought them there in the first place. Bonne chance!

But, okay, sure. Complaints about bullies are acceptable during regular business hours.

3.     Sorry.

Say you’re sorry. No, PiMP does not care what happened OR whose fault it is and don’t Make The Complaint Department have to Pull This Car Over.

Oops! Sorry, wrong medium.

4.     Help.

If you have a partner, if you have a babysitter once a week, if you have a choice between working and not working (vs. those who must work), do not complain about not having any help. The Complaint Department knows far too many struggling single working parents to accept complaints in this area.

      a. Have some perspective, people.


5.     Snacks.

There is a required ten-minute minimum time-lapse between the asking for of the snacks.

Furthermore: If, sequentially, you have asked for and received, a banana, a cheese stick, a clementine, a yogurt squeezer, a bowl of cheddar bunnies, a granola bar, baby carrots and hummus, and raisins and nuts and an apple, that is enough.

6.     Money.

If you have never spent weeks worrying over running out of toothpaste, or had to choose between
a.     raiding those expired bags and cans at the back of the cupboard and paying for heat, or
b.     going grocery shopping,
do not complain about money.

Except, perhaps, to others of your ilk - but definitely check their ilk to be sure.

Yes, we at The Complaint Department know that you say things like, “We’re all struggling right now” to express a sense of, “Wow, I get it,” but that’s just trifling.

You know who gets it? PiMP and her friend over here who both just bought one bag of cotton candy even though we each have two children because those bad boys cost FOUR DOLLARS.

Please see 4.a.

                  The Complaint Department will only accept complaints about money from those with a  
                  generously allotted income limit of $30,000 and below. (F.Y.I.: it is remarkably easy to
                  join this select group, albeit exponentially harder to leave.) Most other complaints about
                  money will be deemed to fall under Rule 1, above.


7.     Children.

                  If you have mentally and physically healthy, neurotypical children, do not complain about them under most circumstances.
In particular, you shall not complain about them to people who have no children, whether by choice or via “the slings and arrows of outrageous fortune."
Nor shall you complain about them to people who have children who have issues of health, learning differences, disabilities, sensory or social issues or other significant differences or impairments…

If you must complain, then kindly preface your complaint with, “Praise the universe, I am very lucky to have such an easy life compared to the lives of those with harder lives” (which will probably be answered with “Praise the universe, I am very lucky to have the child/life etc. that I have…” BUT the preface should still be uttered as a preventative measure).

And please see 4.a.

8.    Speculation and Normalcy.

The Complaint Department thinks everyone is REAL SPECIAL. How did they get that way? We do not know. How should you act around them? Ditto.

Our affiliate, Rachel Cohen-Rottenberg has formulated some great models around dealing with people. Here’s one: http://www.disabilityandrepresentation.com/2013/01/28/how-to-talk-to-normal-people-a-guide-for-the-rest-of-us/

9.     Special Dispensations. 

True Friends, Wise Ones, Elders, Those Who Get It, Family Members from Group A,* and, generally, people who don’t take themselves all that seriously or are seriously cute (such as some children) are not subject to the above Complaint Department Guidelines.


Now that The Complaint Department has brought you this exhaustive list, The Complaint Department is closed. The Complaint Department will re-open on the 32nd of Nevruary.**

Sincerely,
Partial/incomplete Monochrome Persona


* Family Group A is a generic term for certain members of all families and consists of non-offensive family members.
** Thanks to Uncle G. Fullalove (Family Group A+) for introducing the Full Spectrum family to this convenient date.


Thursday, January 24, 2013

First Anniversary Lists III: Choosing your Battles


One initially formative idea for Full Spectrum Mama was that if something worked in our household it might be useful across a wide range of circumstances (consistent boundaries come to mind). Or, at least, our mistakes might prove instructive (diarrhea [still working on that one]).


But surety in these complicated times has never been a strong suit of our household. Readers have been more likely to laugh or cry with us than to follow my commands.

The first thing that comes to mind when I think “parenting solutions” is, um, drinking…For those who are not struggling with substance abuse issues, may I suggest a moderate portion of your preferred mood altering substance? FSM never cottoned overmuch to vino until single motherhood hit. Now, if she can remember, a glass of wine or beer definitely eases dinner and bedtime transitions [note to self: make note to remind self to drink wine].

And then there is the “solution” – much needed in a Full household - of picking which issues and behaviors to address and which to drop. In the matter of choosing battles, the grandmama of all battle-choosing advice comes to mind. Sure, it’s a cliché. On account of because it’s super wise:

The Serenity Prayer 


God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.

Or, for those who are not religious or do not feel that serenity comes from “God,” here is a version from The Serene Atheist (http://sereneatheist.blogspot.com/2009/10/secular-serenity-prayer.html):

Through my efforts, I gain the serenity to accept the things I cannot change; 
courage to change the things I can; 
and the wisdom to know the difference.

 

Years ago, during an unrelated family mental health scenario, I learned that some traits are known as ‘characterological.” This term refers to aspects of personality and behavior that are neither strictly psychological nor neurological; instead, they are character traits – good and bad – that can be remarkably hard to change. Such traits are not reflections of mental illness or neurodiversity per se but have to do with the will and desires and tendencies of any individual. Thus, one might be characterologically prone to greed or generosity, kindness or cruelty; one might be shy or bursting with flair, honest, sneaky, sunny- or surly-natured…

Character can be worked with, its better aspects supported and its lesser elements healed and diminished; but it cannot really be eradicated.

It’s useful to try to get a handle on what’s what in this area, and to know which behaviors are
unhealthy, pathological or reflections of disorder
or
functions of disability or developmentally appropriate
and which are
basic, natural self-expression.

This can bring some insight as to whether or not – and possibly how – behaviors can be ameliorated.

It’s also imperative to know as much as possible about your unique circumstances so that you don’t lament OR excuse inappropriate things, or confuse character with a difference, disorder or disability.

For example, it’s hard to say how much of G’s generosity comes from his character and how much from his Aspergian non-attachment to most material goods. Part of my job is to help him develop enough common sense to distinguish between generous and reckless giving. Z’s giant hambone consists of one part attachment disorder and one part inborn characterological star quality. She needs to learn how to balance and channel that energy, but she will always be a VIP.




Figure I – A FULL Spectrum: from (foreground) Z’s jumping into front of the camera-field “Hi, Look at ME: I am fabulous! All The Time!!! Hey! Did you look away? Hi!” to (background) G’s looking-away expression of “Stripes. Stripes. Striiiiiiipes.” Not to stereotype, but this is…typical. (At the Sol Lewitt exhibit at Mass MOCA.)

The camera lens has captured Z in full form, oozing pizzazz. I cannot imagine telling her to back off or tone it down.

G’s absorption in art here seems part poetic, part flakey, part characterological, part Aspie. What should I do to get him to look at the camera for once, shout at him? I could say, “Pay attention!”

Nah.

Everybody’s got their stuff, right? Whether you (or your child or someone else) are attachment disordered, on the autism spectrum, wonderful in 99 out of 100 categories, mentally ill, spoiled, temporarily or permanently sweet or grumpy or cranky…having a solid perspective on what can (can’t) be changed and what should (shouldn’t) be addressed and healed can be immeasurably valuable in the day-to-day. Knowing what’s what – insofar as that is possible - can help you choose your battles!

Choosing Your Battles List

1.     Safety issues are non-negotiable.
2.     Public humiliation issues are at the discretion of the individuals involved. Only YOU can gauge the unbearable, loathsome edge of your acceptable-humiliation zone.
3.     Is X expressing his/her character or his/her pain/disability/disorder?
4.     Is Y able to change his behavior him or herself or does s/he need help from you?
5.     Are you able at this time to offer that help???
And…
6.     The Ultimate Battle Choosing Question: Can my child (or I, or those involved) learn, benefit, grow or heal from this situation, or should I just let go/accept it?

I have turned this information into a Flow Chart:



                                            Figure I – Choosing Your Battles Flow Chart

This handy, dandy flow chart may help channel typical concerns into decision-making success. As a bonus, options for simple suggestion as well as actual intervention are included in each branch. Whenever I am mired in a real-life situation I always make time to refer to a list or flow-chart, which I naturally have at the ready.*

Next Week: my final anniversary list: "The Complaint Department."

Love,
Full Spectrum Mama


*…in my dreams.