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!

An InLinkz Link-up

PARTY BOOKS

I.

We are at a party. I am having a good time because I am emotionally prepared, have had my one allotted beer, and know lots of people. Z is fine, as always. G is careening around, reminding me of Brownian Motion, not connecting.

He’s basically gorging on sweets and walking in circles around the perimeter of the party.

I know he feels overwhelmed, maybe lonely too.

                                                  Figure I – What a Party Can Feel Like with SPD

II.

G is swinging on a vine outside the party.

“That kid is weird,” says a young white girl, maybe 7 or 8 years old. Her two companions, same general description, nod their heads.

Why? WHY IS MY KID WEIRD? What did he do? Seems to me this vine-swinging is the most “normal” thing he’s done all night.

III.

G wants to leave, as he has from our moment of arrival. I try to buy some time outside. A family - mother, father and child - are standing nearby. The father takes the child, gets in the car and leaves. From the child’s posture, I sense exhaustion.  

“Too much?” I ask the mother.

“Yes,” she says.

“Sensory processing differences?” I wonder aloud, not entirely sure why…just a gut feeling…

”Oh yeah - ___ [her child] is definitely spectrumy.”

(Note: While not everyone with Sensory Processing Disorder {SPD -- which I prefer to call “Sensory Processing Differences,” by the way} is on the autism spectrum, most people on the spectrum do have Sensory Processing Differences. Both ASDs {autism spectrum disorders – though I do take issue with “disorders” in this label as well [another post!]} and SPDs share the aspect of being neurological – vs emotional or psychological – differences.)

But back to “spectrumy:” Yay.

Now we can talk. And we do. Our kids were in different grades at the same school, which is why we looked familiar to one another. At this party, while my G was blundering awkwardly around, her child was getting and expressing an overwhelmed feeling in other ways.

So we have this great bonding conversation about the kids’ social lives and our home lives and all...

…And then she says, “I wish I’d’ve just let ____ bring a book. Then this all would have been totally fine.”

“Whoah,” I shake my head. “G wanted to bring his book too, and I just wanted him to try this and be here, try to connect and talk to people and practice social skills…you know? And it’s been pretty rough…WHY DIDN”T WE JUST LET THEM BRING THEIR BOOKS?”

We sad-smile at each other.

They could have sat together, reading. I bet they would’ve been totally happy, not careening or leaving. I bet they would’ve had the best time.

Next time.

                                      Figure II – What having a Book at a Party Can Feel Like with SPD

Love,

Full Spectrum Mama

An InLinkz Link-up

TEAM FRIENDLY FACE

This is my plan: Over the next few months, I am going to somehow find those other kids (and their families) who are entering 7^th grade/middle school together who will NOT care if someone is “different” or “off” or “weird” and I am going to introduce them to each other. I want to have them know and remember each other’s faces so that when middle school starts they will have friendly faces in the halls and classrooms. (Also…I hope G and I will be able to recognize those friendly parents’ and kids’ faces!)

I both got this idea and started my search at the Middle School Orientation for parents with children in the “Special Education” program* (more on this, soon). Every single one of the parents there had direct, specific and personal concerns about their child getting bullied (among other things).

The woman to my right was crying as she spoke about her daughter being bullied “because she’s just…’off.’” Her fear about middle school was both reasonable and powerful. As she spoke, it occurred to me that my G could be a “friendly face” for her daughter – a peer who would never think she was “off”  -- and who wouldn’t care if she was, anyway! So I slipped her our digits with a little note to this effect.

I turned to look at another woman a few (empty) rows behind us, who’d been talking about her son’s difficulties in tying his shoes, how anxious and unhappy he will feel about this if other kids are judging him (and we’d almost all been nodding), thinking to give her our number too and her face was just – STRICKEN. She looked terrified and devastated and devoid of hope. Almost blank. I – with my sloooow thought process – processed that and then vowed to reach out to her as soon as we stood up. But she rushed out.

I am still thinking about “the lady who left,” because I feel like we need each other, and our kids need each other more…If I see her again – and recognize her, please – I will be quicker.

I will have neither dignity nor restraint when it comes to this mission. Nor will team members be limited to incoming 7th graders! Even online and long-distance friendships can be part of this new, classy, influential team, TEAM FRIENDLY FACE.

So, hey! Lady! And anybody else who might participate! If you are reading this, email me, okay? At the very least, take a moment to consider joining this team – or forming your own -- in whatever way feels right for you and yours. Let’s get our kids (or ourselves, or whatever!) together and build TEAM FRIENDLY FACE!

Love,

Full Spectrum Mama

P.S. A TEAM-worthy post, courtesy of an honorary TEAM member: http://seriouslynotboring.com/2014/04/10/a-smile-instead-of-judgement/

* I wrote to the middle school special education people at the meeting:

Dear all,

I hope this finds you well. Thank you for last Tuesday's meeting.

I was wondering if there is any way to reach out to other parents, families and kids in this group. I think it could be enormously helpful to some of these kids to have as many friendly faces as possible in the halls and classrooms as they transition to middle school. I would be more than happy to be in charge of trying to make something happen, and to pay for materials (mailings?), host any event, etc. But I know because of privacy laws you cannot divulge any information to me. Perhaps I could write an email that you could then send to the other parents? I know that would be an effort for someone to input the email addresses but I think it would mean a lot to some of the families, especially the kids...Thoughts?
Thanks so much,

[Full Spectrum Mama]

A MEETING FRIEND

If you haven’t already got one, I suggest you find yourself a Meeting Friend. What I mean by this is we all need someone who is in a similar situation. You know, the other person who, like you, secretly wants to do the merengue at the water cooler at your conservative office, or the one who also thinks about global warming All The Time, or has to bring their own snacks to school because if they eat vending machine snacks they will be sick all over the common room. The other single parent. The one at the boozefest who’s also in AA.

Whatever your difference, it usually feels better when shared.  Who wants to feel “special?” Or be a martyr? Better to not be alone in differences and/or challenges, no?

For me, finding someone who, like me, was dealing with a surfeit of school meetings (both historically and currently) was a game changer. It made me, as the mother of a Full Spectrum of children, feel like I shared a challenging aspect of life with another human being. It gave me a chance to connect over meeting topics and strategies, rather than having to accept empathy/sympathy from someone who had no idea what I was dealing with or, more likely, choosing to simply keep my mouth shut.

Depending on your location this might not be easy – it took me eleven years - but it’s something worth seeking out if you haven’t already found that person or persons.

And so, without further ado, I present to you:

Ode to a Meeting Friend

For D

If you’re rushing and fleeting to get to a meeting

And you see a sad person who’s sad in their greeting

And you ask them what’s up and they say through a tissue

That the teacher or principal called with some issue

Ask, How many weeks in did it happen to you?

Wait…You’re on your way NOW to a dread meeting TOO??

It is then you will know he or she is The One

The person who’s having the same Special Fun

Say: I take it You got “the school call” today too?

I know how you feel and I know what to do!

Between two there are so many ways to face meetings!

Some sob fests …co-ranting…emotional eatings!

Between two the whole scene becomes funnier, normal…

You can bawl, laugh or BOTH now, without being formal.

So let’s sing the praises of the Meeting Friend

Who is there with the gluten-free agave cookies

Who is there cuz of knowing this stuff ain’t for rookies!

Without him or her your heart might not quite mend

I love you, I love you, my dear Meeting Friend.

Love,

Full Spectrum Mama

EIGHTY-SIXED

My daughter has an attachment disorder. When she is anything but entirely comfortable she talks constantly, animatedly and without ceasing.  My son has aspergers syndrome. He talks at high volume in an unmodulated voice.

In other words, my children are sometimes rather LOUD.

Consequently, we don’t spend a whole heck of a lot of time in restaurants.  But the other day we had a family date with another mother and her aspergian son and her peppy daughter and, sure enough, the table next to us complained.

See, we had thought we could have a peaceful night out with the kids.

We had walked into the restaurant and immediately seen a large, multigenerational family in the big center table. They’d smiled big, friendly, relieved smiles to see us. They knew we, with our four potentially rowdy elementary school aged kids, would balance they and their two little guys right out. 

But we all knew we’d all be trying to keep our children as well-behaved as possible for the comfort of other diners…

Our sons were excited to see each other. They began putting on raucous, clearly innocent and dorky (vs. aggressive or obnoxious - and why do I feel the need to point this out?) plays with their chopsticks. This friendship has been a beacon of hope for both boys, who struggle socially in their own schools.

Our gals were excited to see each other, chatty, berating their big brothers for being “annoying.”

Maybe four minutes after we sat down, a server approached our table. She was super sweet: “We don’t mind your kids at all but another table is very upset…” They informed us we were welcome to eat in the other part of the restaurant. The closed part? That is usually unused?

We knew it wasn’t her fault and agreed right away, trying to leave as little mess behind as possible, taking our glasses etc. with us, faces burning.

Someone from the other family asked what was going on. Looking straight at the offending table, I informed the nice family in a clear, LOUD voice that someone had complained about our children, despite the fact that they were being relatively well-behaved. I explained that we had to move to another room.

There’s a ferocity to motherhood that once made polite, feminist me hiss the B word at a woman who sniped about my letting my young child play under the table at a restaurant (at the time he'd been diagnosed with a sensory processing disorder and I knew he was overwhelmed by restaurant stimuli). ...A protectiveness that had me retorting “What are you whistling at? You better not be whistling at my baby!” at pregnancy catcallers.

As well as that loving ferocity and protectiveness, there is a sadness when someone judges your child on his or her appearance or on other inevitable aspects of their being. Doesn’t acceptance start in the little things? Allowing children to make a little noise? Reach for their Skittles? Be included even if they are a different color or neurology or different ^$%@%^% ANYTHING?

Don’t ALL children learn through having opportunities to broaden their experiences? By moving outside of their homes and their neighborhoods to restaurants, different streets, neighborhoods, cultures??? Don’t they deserve as many chances to grow as we are able to offer them?

Children who are held to basic standards of kindness yet allowed to make mistakes in the niceties without dreadful repercussions may grow up to be accepting, no?

Post the Zimmerman verdict, I listen to my friends with sons of color talking and writing about how they instruct their sons: “Don’t act suspicious,” “Stay quiet,” “Keep your hands visible, “Don’t make yourself a target”…

A week ago I might’ve ventured to hope that we were moving away from the necessity for such admonitions.

How far are we willing to go to keep our kids quiet? How far to keep them safe????

Acting “erratic” (G) and dining out while brown (Z) are definitely things I see in my kids’ futures. I want them to feel welcome in the world nonetheless! I thought taking them to a restaurant would be a good thing, but our good thing almost got eighty-sixed along with us.

Do you think, stern people of the next table, that we have not tried to have our children fit your behavioral standards?  Do you not think we are doing our best and maybe occasionally deserve the right to go out and eat dumplings?

See those first few sentences of this post where I define my kids as their conditions? You, next-table chumps, have just gone one worse than defining my children by their conditions. You haven’t even given them a chance.

Sure, sometimes a noise complaint is just a noise complaint. But I think we owe it to ALL OUR CHILDREN to give them the benefit of the doubt.

Children raised like that will likely do the same for others.

Anyway, the restaurant had another room and we went there – and the other family actually got up and came over to hang out with us out of solidarity. (Thank you, warmhearted, inclusive, attractive, multigenerational family!)

So things ended up ducky.

Still, the next time you are in a restaurant (or someplace), won’t you smile at someone who is maybe a tiny bit out of their comfort zone? Maybe even ask to watch the chopstick drama?

Love,

Full Spectrum Mama

Crazy Carla & the Retards

A year or so ago the Full Spectrum family was having brunch with another couple and their children.  Other Couple had a son a little older than G who was neurotypical, “cool” and athletic but usually willing to accommodate G’s Pokemon obsession during family get-togethers.

Knowing we were to see this family, G had been planning for days which Pokemon cards he would bring to show Other Couple’s Son, a fellow he admired quite a bit.

When we showed up at their door, though, Son had a friend over. A similarly “cool” friend, of his own age. G—always wary of three -- immediately tore into an excited preventative monologue about Pokemon for Son. Son just as immediately announced, scornfully and for benefit of Friend, “I hate Pokemon.”

G’s little face crumpled.

There are kinds of valor that are not in history books, but that matter greatly all the same. Among these, we ought to include the bravery of a little boy who has just been dissed and dismissed and stands his ground there in the hallway.

“C’mon G, let’s go get some food,” I said, throwing an arm around him and pulling him toward the kitchen -- probably embarrassing him but making him to know he was very loved.

A little later Other Wife was showing me some renovations around the house while our husbands, Z and G hung out with the bagels.

“You know,” she confided, “This is really hard for Son.”

“What do you mean?” I asked, genuinely perplexed.

“Dealing with G being here.”

“What do you mean?” I still had no idea what she meant.

“When I was a little girl I had a cousin who used to come over and she was…well, like we used to say, ‘retarded,’ and it was very hard for me to be around her.”

I stood there, speechless. Was she saying that G, who has autism and is academically gifted, is “retarded?” Or that being around “retarded” people is terribly hard for the “non-retarded?”

I had been warned by several friends about this woman. They called her “Crazy Carla.”* Having been a victim of smear campaigns myself (small town viciousness, epic yoga world pettiness), I always try to give people the benefit of the doubt. I was aware from my own interactions with her that Carla was high strung, but I hadn’t seen the full extent of her possible “craziness” until now.

I couldn’t help but feel, though, that what she was saying aloud might reflect the way a lot of other people feel without giving voice to those feelings.

She backtracked a little: “I’m not exactly saying that G is a ‘retard’ but Son doesn’t know how to deal with having someone…like him around! So that’s, you know, really hard on him. I feel bad for him.”

Where I am at on the Spectrum, I have a really hard time expressing myself when I am overwhelmed by sensory or emotional input. After this statement, I literally shut down. I have no memory of responding in any way.

Retorts I wish had popped into my mind in a timely fashion:

“Really? Is your child reading Hawking?”

“Oh…I guess retards should be treated with disdain!”

“It’s okay -- G has a hard time with A-holes and I think he’s doing pretty well with it today.”

“Probably you should have just pretended your cousin didn’t exist! It’s very inconvenient when people are different.”

“You just made me want to die…for so many reasons.”

Or even -- but I was not and still am not personally enlightened and big enough for this one -- “What do you mean?”

We went back down to the kitchen. Pardner said later that my face was grey. We left after awhile.

I never said anything. Much like when people ask, regarding Z, “Is she your REAL child?” I feel like, if you really just opened your mouth and said that, what is there to say? I do – obviously! – believe in working with people whenever possible around accepting differences, universal equality, and so on. Nevertheless, there are people who are receptive to expanding their empathy and understanding and people who are willfully ignorant. (Please see Ann Coulter and http://www.change.org/petitions/ann-coulter-public-apology-for-constantly-using-the-r-word!)

There’s an argument to be made for reclaiming a word such as “retard,” too. Along with feminists (and others) reclaiming derogatory words about women, people of different ethnicities (and others) reclaiming disparaging words about their ethnic groups (insofar as such things exist in any clear way), Wiccans (and others) reclaiming the word “Witch,’ and so forth, certain individuals can and do lay claim to appropriating “retard” for their own positive purposes. That is a different issue.

In this day and age, there is no excuse for using the word “retard” about a child. None.

As for “Crazy,” well, most of my favorite people are a little nuts. Good nuts.

Love,

Full Spectrum Mama

* Crazy Carla’s name has been changed (the Carla part, not the Crazy).

Need…Help…

A year ago last month, we first sought refuge with our attachment disorder specialist therapist. Neither Progressive nor Old School nor any other parenting efforts with Z seemed to be working and home life had become nightmarish. Within days of our first session we were able to make significant changes and improvements to our actions, Z’s behavior and quality of life for our whole family.

The therapist’s most useful suggestion was to tell Z, at the very first sign of acting out, “You need help. It’s my job as your mother to help you.” I would take her into my lap and bundle her up into a snuggle position and say this, sometimes tailoring it to particular circumstances, i.e., “You need help right now with being a good listener,” or “…with doing safe things.”

In this way, I would stay in charge, thereby helping Z to feel safe, yet at the same time be nurturing and loving. This strategy nipped many a giant blowout in the bud, which saved lots of energy for Z to grow in more healthy ways.  It would not be hyperbole to say this plain phrase changed our lives considerably.

Z, however, is far too smart for such a simple approach. It took a few months, but it was not very long before, in inimitable Z fashion, she wrangled control of these words of wisdom.  If, by some chance, I missed her signals that she was decompensating, or if I was just too dang tired or busy to drop everything and get down on the floor and “help” her, and, if, then, things degenerated and she began a ginormous tantrum she would often begin screaming at me along the following lines: “YOU BETTER HELP ME! I HATE YOU! YOU WON”T HELP ME AND I TOLD YOU TO HELP ME!” and so forth.

One might well argue that a parent’s duty is to help their child, no matter how distasteful the prospect might seem at a given moment.  Z’s attitude in this context is certainly not conducive to cuddly, helpful helping, but FSM is a big girl and usually able to transcend such reactions. The larger issue is the fact that Z is able to wrest control of the situation, and put Mama in a position of being unable to do the very thing she needs to do (“help her”) because allowing Z to be in charge would be destabilizing and frightening for her, especially in meltdown mode.

I have a WROE (wide range of emotions) when stuff like this happens. Somewhere, rather deep down at the moment, I feel love and empathy for my child. I partly feel the way I felt when Z was little and would cry in this jagged, angry way that made me feel like running away from an enraged spitfire, rather than mothering a small and helpless baby. An aunt told me these sounds are known as  “non-attachment-promoting crying,” because parents do not naturally respond to such sounds in positive, nurturing ways. Also, I am confused: I have no idea what to say instead of “You need help,” and the phrases I do come up with in the moment are either unprintable or saccharine. I want to mean what I say.

In addition to never going anywhere again (please see http://fullspectrummama.blogspot.com/2012/06/diet-i-diarrhea.html) I am also never going to a party again. Invariably, I find myself flying solo at parties (Pardner is a chef and is essentially gone from Thursday morning early until late Sunday evening) with two hopped up kids, feeling overwhelmed before the sweat beads even form on my single margarita.

G starts to get anxious days in advance: “Will there be anyone there I know?” “What if there is no one for me to play with?” I try to give him strategies for socializing, but by the time we arrive he is in full needy force, hitting the ground running, armed with his customary, hand-extended, no-eye-contact “Hello-my-name-is-G–I-like-Legos” introductory act. When this falls flat, he usually follows me around saying, “There is no one here I know,” and “No one wants to play with me.”

Z, falling as she does on the high social acuity slice of the spectrum, makes friends immediately. At this particular party, her new friends helped her climb about ten feet up in a tree and then removed the ladder and left her there. She asked a passerby to let me know that she had climbed high up in a tree, and to please come look… Neither passersby nor little friends seemed to notice the potential danger in a small child being several times her height in a tree with no way to get down. She comes across as that capable, after all.

Post-rescue, while I was cheering G on in a race, in which he would come in near last but not notice (go G! Seriously!) I happened to look inside to the drinks table, where Z had a two-liter bottle of cola in two hands and was pouring what remained of it down her gullet.

I ran inside.

“What are you doing?” I asked, aghast. (This is exactly what one is not supposed to do: children with attachment disorders need surety from their parents.)

“You said I could have a drink,” she replied in a saucy tone. Several admiring girls a bit younger than Z stood around watching wide-eyed.

“Didn’t you know that I did not mean coke? That children don’t drink caffeine?” (Wrong question: see above.)

“Yes.” (Reluctantly, with sulkface.)

“I guess right now you need help with making healthy choices,” I told her, pulling her to my side and taking the empty bottle. ”You are going to stick with me for awhile.”

I thought she would like being doted upon. Apparently, at this particular juncture, doting was humiliating.

What next ensued can only be described as a major, whomping, shame rage tantrum. After offering clear guidelines in a deceptively calm voice as to the consequence of being removed from the party if she could not stop raging, I carried her kicking and screaming to the car. I shut her in while she flailed and shouted and tore anything in the car she could get her hands on. 

Having previously childproofed the car, I had only to remove G’s precious “Complete Pokemon Guide” as a precaution. I sat down on the hood with that large, well-worn book in my lap, and tried to wave cheerily to the faraway people enjoying themselves in a variety of pastimes on the lawn. G had given up on the party kids and followed me to the car. He lounged companionably next to me. We watched the festivities with mixed feelings: it would have been fun to be casually part of it all…But was that really a realistic option?

Inside the car, the screams raged on, punctuated by punches to windows and seats.  G and I tried to be positive, chatting about what a lovely, green day it was. When I turned my attention to the sounds I could hear Z shouting, over and over, “I! NEED! HELP! YOU! STUPID! MAMA!”

A sort of funny thing about all this – funniness being, I suppose, relative and contextual – is Z’s miraculous resilience. Once she decides she is done with a tantrum, she appears to be immediately 100% fine…Unlike the rest of us, who are still reeling hours later.

I returned to my perch on the trunk to wait for that eventuality. G is, unfortunately, accustomed to Z losing her temper and was, fortunately, unphased by the state of affairs. “Hey,” he said, noting the Pokemon guidebook, “This seems like a great time for a Pokemon battle!”

“It sure is,” I sighed, and mustered a smile. “Sounds fun!”

I meant it. Sure to be better’n the parenting battle I had just lost to a gaggle of little girls and a large bottle of soda.

Love,

Full Spectrum Mama