TOO TIRED

Dear Persons,

I’m tired this week, too tired to really even think up a good, snazzy blog post.

…But it occurred to me that it might make sense, for this month’s Voices of Special Needs Blog Hop, to acknowledge that parents (and caregivers) of people with special needs often get really, really tired. On top of all the “regular” parenting stuff that makes “regular” parents pooped (whatever “regular” means in both those contexts), there’s just more general day-to-day negotiation and oversight with bureaucracies like schools and agencies, not to mention the time spent investigating and dealing with therapists and treatments (and finding the money or resources for these??? Puhlease!), never mind additional efforts at home and in social contexts with our children themselves. 

Here’s a very small example: Does YOUR teen do this every day? 

(Not shown: all pockets bulging from giant pokemon decks. Why picture was taken originally: because when I told him he had to fix his socks - as I do almost every day -  he looked down - as he does almost every day - and said “They’re fiiiiine.” So I tried this new strategy…)

Guess what? He’s tired too.

It’s often exhausting to live in a world that seems to mostly operate by rules that don’t make intuitive sense to you - and that can even sometimes seem wrong or “dumb” (his word). Like the socks-outside-of-pants rule, and others that can be less benign, like the brushing-teeth rule or the sleep-at-night rule (this is a fun one vis-a-vis being tired, right? People with neurological differences, as well as a range of other disabilities, often struggle with sleep challenges), the following-directions rule, and so on… 

My daughter also has special needs. As with many people who have spent time in orphanages, she has an attachment disorder. We’ve worked really really hard  - on our own and with therapists, teachers, etc., - and she’s healed so much. But she still moves in the world with a heightened vigilance and a fundamental lack of trust that can sometimes come out in unhealthy ways.  

She’s tired too. 

And so, I bet, are you, sometimes. Too tired. Of course you are. 

And of COURSE we love our children with all our hearts. Duh. It’s just that this world is somewhere between a little bit and a lot harder every day when one has and/or ones children have differences from the “regular” (with the usual disclaimer for this word) people for whom the world seems designed. 

It’s hard being a parent. It’s hard being a parent of a special needs kid. It’s hard being a special needs kid. Heck, my Meeting Friend and I sometimes text each other “NN,” our abbreviation for “Night, Night,” at eight am.  

When Pardner says, casually, “He’s probably not going to be able to live on his own. Don’t you know that?” NN. 

When just getting to school in one piece is a miracle? NN. 

When you worry ceaselessly about your child (or your children) - not because there is something “wrong” with him/her/them but because the world is so much harder for him/her/them to navigate - and thus are moved almost to tears by pants tucked into socks, again? NN.

PLEASE don’t feel alone in being too tired sometimes. I recently texted a mildly-hysterical friend who has a non-sleeping toddler to tell her to remember that when we don’t get enough sleep we often feel way more negative about everything than we otherwise would. Then I thought, “Good one, FSM. Listen to your own words, why dontcha?” Being tired actually isn’t the same thing as being depressed, having an anxiety disorder, or having a too-hard life - but it sure can feel like it!

Can we be gentle with ourselves? 

Let’s try to prioritize getting more sleep for ourselves AND our families, however possible, and taking care of ourselves so we don’t get too tired and remain that way all. the. time.

NN!

Love,

Full Spectrum Mama

Welcome 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!

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WE ARE THE CHAMPIONS

Dear Persons,

The recent news of an autistic boy named Chase Coleman being assaulted during a cross country meet, essentially for being Black and autistic, broke my heart. G runs cross country, and although G is not Black or non-verbal I share many of the concerns this boy’s mother had, such as worrying about G getting lost during meets. G’s Sensory Processing Differences (SPD) and other challenges can make running cross country distances and trails a minefield for him, yet he keeps trying, usually with a smile. He also hasn’t digested some of the central customs of the sport, such as being at the starting line with his number pinned to his uniform (don’t ask). 

Like Chase’s mom, I attend all of G’s meets, because I am immensely proud of course - I am sure Chase’s mother believes her son is a real champ, as I do…But I also go to every meet because I want to keep an eye on things.…make sure everything goes okay.

My daughter, Z, also runs cross country in her elementary school. While I try to attend all of her meets as well, I don’t worry about her in the same ways - at all. East Asians (she is of Chinese ethnicity) are not stereotyped in the same ways that people of African descent are, so I don’t worry about her being targeted as a threat (though I do worry about her vulnerability, as most parents of daughters do…). She’s fast as heck and has a great sense of direction, so I don’t worry about her losing her way or her “performance” or confidence…

She’s celebrated on her team, where it sometimes seems my G is merely tolerated. 

You know…the Full Spectrum.

Back to Chase. I was having that feeling that some readers will find familiar where you suspect your child’s very real efforts are not being appreciated, so I decided to write G’s coach a letter (below). I’d just finished writing it when this hit the news: 

Autistic black teen got lost running a 5K — and was assaulted by a man who feared getting mugged - Washington Post

Rochester cops revisit attack on Syracuse teen runner with autism - Syracuse 

Chase was just standing there - and he was attacked! In “self-defense.” As it happens, I have many close friends and family who are people of color and/or autistic. But I like to hope that just because one isn’t related to or close friends with a certain “type” of person doesn’t mean they are “suspect.” Chase’s story reminds me that DIFFERENCE reads, to so many, as DANGER. Thus, children with differences are vulnerable, perhaps none more so than black male children. 

Does it have to be this way? Must difference lead to ASSUMPTIONS? And why are those assumptions usually negative? Let’s just be very logical here: how can a SKIN COLOR or DISABILITY be THREATENING…unless  wholly through ignorance?

And what, exactly, do we mean when we use the word DISABILITY? Believe me - I know it’s complicated. But I’d like to focus on one aspect vis-a-vis Chase Coleman, and my G: For one thing, a difference BECOMES a disability when one is seen as less than, or treated as such, or denied opportunities or inclusion or even basic assumptions around shared and equal humanity BECAUSE OF THAT DIFFERENCE.* 

I know this is a broad definition of disability, but it comes from my and my family and loved ones’ lived experiences. Differences such as SPD and autism are often called “invisible” disabilities, where being Black is (usually) not invisible….Nor is being Black known as a disability per se. But by the definition of this one aspect of disability I am discussing here it may certainly be experienced as such. 

In this context, a disability is something that prevents someone from living their best life, from being their best self, from full self-expression or activity or participation…NOT because of any quality inherent to their being (neurology, skin color, gender, body type or shape, intellectual capacity, LGBTQ status, nationality, ethnicity, age, religion…), but because of the way their environment is designed (for “normal” people) — or because of the attitudes - including ignorance - of others. 

How wrong is that? 

We, in our communities, need to find ways to celebrate difference, not squash it. We need to help one another see each other as human beings, united in this crazy, hard, wonderful, awful, confusing thing called life. Be curious about each other, rather than thinking we KNOW already who others are because of appearance or labels.

WE need to be Champions of acceptance, understanding, inclusion - for ALL the different kinds of Champs out there!

Dear Readers, if we will not be the champions, who will?

On this deeply fraught election day, where so much is at stake for immigrants, women, people of color, ALL OF US…Here’s one tiny way I have tried to explain G’s differences to so that his unique strengths and challenges will be seen: 

Dear Coach,

I wanted to thank you for working with [G] this fall, for pushing him and expecting the best of him. He has improved immeasurably (from 39 to 27 minutes - and I think he may even do better at the state meet!). He has also grown in confidence.

I wanted to fill you in on a few things about [G], in case they are unclear. You may think he is not taking things as seriously as he should or not working as hard as he can or being as responsible as he should...

As you know, [G] has asperger syndrome. Everyone with asperger syndrome is unique, but some of the aspects of it, such as social and motor challenges, are shared by many. 

[G] has something called low muscle tone. This means EVERY physical activity is harder for him because his muscles have to work much harder than they would if he had average or high tone. I'm sure you know what this means, as an athlete yourself, but you likely don't know what it actually feels like. I do - because I had low tone myself as a child. 

Everything my athletic family did (biking, running, soccer) was practically torture for me. In those days no one knew about this stuff. Anyway, I became very athletic over time and somehow overcame that disability.  I have "normal" muscles now for the most part and physical activity feels enjoyable - **completely different** from how it felt when my muscles didn't work efficiently or well. I think this will happen for [G] too, but I speak to you as an athlete who once struggled as [G] does: please understand that running is Literally harder for him than for the other kids.  He's not exaggerating or making drama.

Also, [G] has many motor skills and balance issues. It's very brave for him to get up again and again when he falls many times, sometimes quite badly, every time he runs. I know other kids get hurt from time to time, but [G] is getting hurt practically EVERY time - and he's getting up again and running again. 

It's also a mixed bag that he feels humiliated when he falls. On the one hand, it's actually social progress for him to realize there is a humiliation factor in falling. At the same time, he now has to weather that humiliation in front of his peers, for things that are out of his control (motor skills, balance). I know his teammates are supportive, but he still feels bad. So it's DOUBLE brave for him to get back out there with both physical and emotional pain.

Finally, I know sometimes [G] can seem flaky, but this is his central disability right now: a lack of executive function. I am less surprised when he misses the bus for a meet, or leaves a shoe (WITH HIS PHONE IN IT) in the port-a-potty where he changed into his uniform, than when he remembers, every single day, his water bottle, his school clothes, his phone…

I want to share with you that the [G] you are seeing mostly keep track of bus times, his stuff, transitions, etc. could never have done this even a year ago. I am happy every day that he keeps track of his stuff. I know it's a "normal" thing to do, but for him it's a huge leap - something that gives me enormous hope for his future.

So even though I know [G] is one of your slowest runners, to me he is a true champion and I am beyond proud of him. Thanks for being part of this amazing growth for him.

Sincerely,

[Full Spectrum Mama]

Thanks and Love, Dear Readers…Now please go VOTE,* if you have not done so.

Full Spectrum Mama

* For a small dose of perspective on just how good humans are at judging the worth of different kinds of people, consider that women in the United States did not have the right to vote until 1920. Yes, 1920!!!! Less than one hundred years ago...

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!

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SEE EVERY SPARROW

Dear Persons,

One way to describe Sensory Processing Differences (SPD) is by using a filter metaphor: the sensory and neurological filters of people with SPD filter feelings, experiences, and/or surroundings differently than do the sensory and neurological filters of most people.

Some of our filters filter out more. Sometimes people with this sort of filter are called “seekers,” because they seek more sensory input, or they are called “under-responders,” because they feel/notice/process less sensory input than the average person does. 

Some of our filters filter out less. Sometimes people with this kind of filter are called “avoiders,” because they avoid the overwhelming input that certain contexts produce. They are also sometimes called “over-responders,” because they feel/notice/process more sensory input than is typical. 

Of course, all people have different levels of sensitivity, but these differences are magnified for people with SPD. Many people with SPD live with a mixture of filters, perhaps being extremely sensitive to taste, while craving strong movement (yes, movement is a type of sense, in fact, several sorts of sense - but that’s another post!). 

Sometimes a high level of sensitivity can lead to a sort of sensory shutdown that can look like a low level of sensitivity! 

Sensory integration - the seamless intermeshing of the senses, and the “normal” processing thereof - can be challenging for people with SPD. My son G and I both live with a mixture of extra-strong and extra-weak filters. Bright lights and artificial odors can knock me out, but I have severe face-blindness (prosopagnosia) and can trip over my own feet. Lights, smells, even loud sounds don’t phase G - and he shares my face-blindness in abundance - but there are other things of which he takes uncommon notice. 

One of the most wonderful things about G is that he notices every single bird in our environment. Not just your cardinals and goldfinches, but every pigeon - “Look! A pigeon!” “Another pigeon!” and every single sparrow we pass on the street - “Oh mom - do you see those cute sparrows?” “Hey, guys - a sparrow!” “There’s a sparrow under that car!” etc. 

Some people dismiss this constant-noticing, or rib him good-naturedly about it (“Wow, a sparrow!”), and it’s sometimes inconvenient and time-consuming, but I celebrate it with all my heart.

Imagine a world where every individual person was noticed and appreciated, no matter how similar, no matter how different. Imagine a culture in which everybody took the time, made the effort, to really see every single other person. I dare to think such things as gossip, bullying, stereotyping…all those evils that come from pre-judging others and from not seeing each individual as equal and worthy in their own way…would disappear.  

G doesn’t filter out every sparrow as just another instance of a drab bird among many. Instead he enjoys a sense of wonder for each tiny miracle of sparrow individuality. 

What if we all tried to see every sparrow? 

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

SCHOOL TESTING

Dear Persons,

This spring, I received the voluminous results of a huge barrage of testing for my son G’s three-year evaluation for his IEP (Individualized Education Plan). Among many, many, many other outcomes, I was informed that G had scored under the first percentile in “Irony.”

Although we have had him on a strict Monty Python/Austin Powers program for some time, and the kid has a fantastic sense of humor, we realize that perhaps he may well be lacking in “Irony.” Like many individuals who don’t fit the typical “norms” or test “average” in many areas,   G excels (sometimes extraordinarily) in some areas and is less skilled (sometimes remarkably so) in others.

In my experience, these sorts of test results – lower than expected, very uneven - are actually “normal” for many people on the autism spectrum, people with ADHD, people with sensory processing differences, people who are neurodivergent and/or disabled and/or differently-abled and/or quirky and/or don’t care about testing...

Just once, though, I’d like to receive some test results along the following lines:

Dear Dr. Full Spectrum Mama,

Here are our test results for your accepted-just-as-he-is child.

G scored in the 70^th percentile for “Telling Bad Jokes.” Although we found that his jokes were generally pretty lame, and noted, significantly, that he was almost always the only one laughing at said jokes, his score was slightly lower because he at times did in fact stop telling jokes, especially when asked to “stop repeating that joke which we have already heard seven times.” Still, this is a respectable “Telling Bad Jokes” score, and something he should feel good about.

We noted several areas of growth. G’s “Confidence in the Face of a Lot of Really Daunting Obstacles” outcome has improved by 50 percentage points – to the 88^th percentile - since he was last evaluated in his former school where he was getting bullied. Also improved were his ratings in “Zipping Pants” (up by 20, to 61^st percentile), “Blowing Nose Rather Than Just Letting Snot Drip Down” (up by 15, to 56^th), and “Overall Executive Function” (up by 3, to 4^th).

His “Amazing Metaphorical/Metaphysical Insights Not Necessarily Appreciated by Peers but Mind-Blowing for Adults” score remains very high (92^nd percentile), as corroborated by many of his teachers in the narrative portion of the evaluation; while the closely-related “Willingness to Write It Down According to Assignment, Dangit” score remains alarmingly low (5^th percentile).  

We would also like to raise some concerns around the fact that G’s “Remembering School Stuff” score of 8^th percentile does not seem to match his remarkable achievements in the areas of “Remembering How Many Days I Have Been Dating ___ “ (98^th percentile), or “Remembering the Tiniest Details About Every Pokemon, Ever” (99^th percentile) -  even with a 10 percent margin of error.

His IEP should reflect the need for accommodation in the former area, yet also take into account the possibility that G may have an asymmetrical range of priorities specific to his own...priorities.

Some of his strongest scores were in “Wonderfulness” (85^th percentile; this score was mitigated by “Teenage Rote Sullenness” [45^th]); “Interest in Girls” (98^th percentile; this test is administered according to self-reported sexual preference and controls for Trying-to-act-like-you-are-not-thinking-about-____-All.The.Time); and “Thinking About Pokemon” (90^th percentile; down nine points from previous score - possibly offset by “Interest in Girls”). “Knowing the Names of Pixies, David Bowie, Nirvana, and Red Hot Chili Peppers Songs,” at 65^th percentile, was also solidly above average. 

He should continue to build on these strengths.

Although he scored just above average in “Teenage Boy Flatulence” (58^th %ile), when measured against the general population G’s gassiness was easily in the top 10%.

Most importantly, for being unfailingly kind and polite (even thankful!) to our extensive testing staff, and for countless other reasons, G scored off the charts (above the 99^th %ile!) in “Being Himself.”

Congratulations,

The Testing People

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

THE FULL BUCKET

Dear Persons,

 I’ve seen a bucket metaphor here and there, used in different ways, across neurodiverse  communities. I recently shared it, in its OVERLOAD/OVERWHELM form (there’s also a form that’s related to goodness, happiness, and loving/kind acts), with Full Spectrum Grandmother, who found it very useful, so I thought I would share it here, too. It’s by no means original with me, but it’s been super-helpful in a variety of contexts.

When your SENSORY (as always, I include emotions and other mental states here as well, as feelings) BUCKET is full, you feel on edge, about to spill over.

You can’t take on more (tasks, responsibilities, activities), or even take in more (information, stimulus, social cues) effectively; in fact, more, in just about any form – even positive – is simply too much.

I think of my toughest years in graduate school, when I was reading super-dense materials at all times – and reading trashy mysteries the rest of the time. I didn’t have the brain space for anything more demanding.

Now that I have a family and work, my bucket is more Full than ever. One of the top bucket fillers is my smartphone! Back in the day, emails and phone calls were limited to very particular times, and texting didn’t even exist. Now we are on – and presumably accessible -  24/7. Dealing with “special needs” bureaucracy, family and personal health issues, finances, running a household, and teaching a high needs population at the community college where students face huge challenges every day just to get an education...I know you all have your lists, but that’s mine: what fills, and sometimes – often - overfills, my bucket.

This is important: it’s not just hard, bad, or stressful stuff that fills your SENSORY BUCKET – it’s anything that’s stimulating and absorbs (rather than rebuilds) your energy. This holds especially true for people with SPD (sensory processing differences). For me, these positive, yet absorbing bucket fillers include great times with my children and Pardner, cultural outings, fascinating classroom discussions, travel...

It’s genuinely helpful to be aware that my SENSORY BUCKET gets Full, and to have a visual for this concept, because when my bucket is Full I tend to feel hopeless, desperate. I melt down internally, by feeling useless and getting profoundly overwhelmed and unsure how to do the next thing, and the next...

I know what I need to make room in my bucket: long walks, yoga practice, lengthy bouts of gardening, meditation practice, reading time, creative time, above all, time alone. Oh! And regular (weekly? {monthly?? [yearly???]} massages! Haha.

But let’s look at a more realistic scenario: my son G. G tends to shut down when his bucket is Full. This is his own expression of meltdown. He will stop listening, stop getting anything done, retreat. After a very Full day of school and activities, my sensory-sensitive son needs, from what I can see: extended time alone sorting through his Pokemon cards, And he gets it. And it really soothes and balances him, makes room in his SENSORY BUCKET for the next day’s interactions and experiences.

People with sensory challenges often need to rest their brains.  We also need to feed our hearts and souls. What do you and/or your loved ones need to create room in your SENSORY BUCKETS? Are there little things you can do, step by step?

For example, realizing that every day I would tell myself I would practice yoga at home before school pickup “after I got everything done,” and that every day I would never be left with any time to do so, I have just started (on the days when that’s possible) taking a quick walk after school drop-off when I get to wherever I will be for that day - before I “get everything done.” It’s not yoga, it’s improvised...yet that little bit of self-care makes a bit more room in my bucket so the “everything” seems more manageable. A week or so of these walks has created enough spaciousness to enable me to write and draw this post – which would not have been possible last week, trust me!

What can YOU do for yourself and/or your loved one(s)? A breath? A break? A tiny shift or change? Recognizing and acknowledging a Full SENSORY BUCKET is a great first step!

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