4C, 4 Momma, 4D, 4A, and 4B

4C, 4 Momma, 4D, 4A, and 4B
Most of the Four me (and you) fam

Monday, October 31, 2011

A trip down Trick-or-Treat Lane (with an Aspie)

AH! The wonderful, amazing memories I have of Halloween as a child. I LOVED trick-or-treating. We would meet up with my family's best-friend-family for trick-or-treating at my beloved Grammy's house. We'd run through her amazingly cool, old neighborhood, lugging back load after load of candy. After we were all done, we'd sit on her blueish/greenish burber carpet and sort, swap, and trade candy. She used to light a really cool fire in her fireplace, complete with pinecones that changed the color of the flames. And she always baked us our favorite cookies to enjoy. Because, you know, candy doesn't quite give enough sugar that night...you need cookies, too. DUH?!

And, the anticipation and excitement leading up to that glorious night. My mom would help me start planning out my costume MONTHS in advance. And, she ALWAYS made them. Always. And, I got to help. One year, I was Minnie Mouse, with white gloves, Mom's white wedding shoes, and a polka-dotted skirt. My fave costume was the princess. She bought a pink dress at a garage sale and sewed silver stars and sequins and ric rac on it. It had a long, flow-y headdress of pink tulle with more silver stars. I thought it was heaven on earth.

Like all idiotic women who have no children, I dreamed that Halloween would be JUST like this with my own children. They'd be excited and enthusiastic about the glorious act of selecting and making a costume, they'd excitedly wear it as many times as they possibly could (hopefully to bed, too, if I was lucky), and they'd run home to share their exploits and candy that night.

Then, I had a child with autism. Nothing really was as I dreamed it would be, not the least of which was Halloween.

For a kid with autism, Halloween is a real pain in the ass. Everything looks different (cool decorations that the rest of us love), people look different (cool costumes that we slave over), and everyone acts different (anticipation that the rest of us burst with as we near the big day). Add into that the sensory and tactile nightmare of costumes, and you've got yourself a REAL treat. ;)

When 4A was 4 years old, I sewed her a beautiful butterfly costume. I got the idea in a magazine, and I sewed wings from a glorious patchwork of fabrics in her favorite colors. 4A has always loved butterflies (they have life-cycles and lots of interesting facts, which, for her, were a breeze and joy to memorize and spout off ad naseum). We've always thought of her as butterfly-esque. A rigid and oppositional and scripted being who emerged from her cocoon (with the help of medicine and behavioral therapy and a host of other supports) into an amazingly glorious soul who is able to be present in her own life. So, this butterfly costume had much more wrapped up in it, you see, than just the fabric and my time. My dreams were in those wings, damn it! All those dreams of Halloweens that I so enjoyed with my mom and Grammy and wanted to relive with my own babies.

I don't have a picture of those beautiful wings to show you. I put them in the fabric recycle. I had to get rid of them at the time because my heart was broken. I know better now, of course, but I did what I had to do then to survive.

That morning, 4 years ago, we were attending a little party at our beloved babysitter's house. I dressed up 4B and 4C, as they giggled with anticipation and excitement, checking themselves out over and over in the mirror. :) When I went to dress 4A, "it" started. She tantrummed, miserably. You see, it was day time, and costumes don't belong in the day because costumes are for trick-or-treat, and trick-or-treat happens at night. It wasn't dark/night that morning, so she couldn't possibly be going trick-or-treating, so she didn't need a costume. You see where I'm going. Never you mind that it was a bonus/extra chance to wear a costume (which most kids LOVE) and that candy was most assuredly involved. It was not dark, damn it, and she was NOT, accordingly, putting that thing on.

When I finally worked through the behavioral plan to get the costume on (I know why I fought this battle, but I really wish, in retrospect, that I could have been on HER agenda and plan and NOT mine), she flipped her shit again. Turns out those beautiful wings were heavy, such that they pulled her shirt back so that the collar of her shirt put pressure on her neck. Disaster.

I finally abandoned ship, sticking to my guns about a costume, but bagging the wings and throwing this together on the fly. Took 4 sheets of paper, a roll of double-sided tape, and about 3 minutes.

Bless her heart, she wore that thing until we got to the party. After we'd entered the party, shown the costume, and taken the obligatory picture, she ripped all those bones off. Without haste, thank you. See how pleased she is to be rid of the damn thing?!

Of course, she let me redo it that night for trick-or-treat. DUH!!! Because costumes are SUPPOSED to be worn at night.

There's much more to the story, of course, but we'll have to wait for another time. You'll excuse me, please, while I run out the door to take 4C to her preschool Halloween party in her sweet bride costume that she's been wearing to the grocery store and to bed, that she helped me make. Turns out, it is what I dreamed of, after all. And, even though it wasn't what I dreamed of the first time around with my first baby, it has absolutely to be the single-best treat of my life.

P.S. Sandbox Learning makes a super cool Halloween social story. Seems that blogger's linkup function is down, so just cut and paste this into your browser. http://sandbox-learning.com/Default.asp?page=52

Tuesday, October 25, 2011

Birthday parties with and for an Aspie

I'm still here!

A couple of weekends ago, 4C was invited to a birthday party at a pumpkin patch. On a beautiful fall day, I took her to the farm to hang with her besties. She was in her GLORY! She picked out Halloween clothes to wear to the party, and when she was given a cowgirl hat to wear, she was the only kid who kept it on for the whole party. Always so full of enthusiasm, that one, she didn't mind that it took FOREVER for the elderly farmer to remember to pick us up out in the pumpkin patch or that it was windy enough to blow your plate away while you were eating. We were there for almost 4 hours, and she rolled with it the whole time, having a blast just to be there.

How different things were with 4A. I DREADED birthdays with her, especially her own. During those preschool, birthday-party circuit years, I loathed the themes, the activity parties, the food, the singing, all of it. First, she'd tantrum the entire way there about going (never you mind that most kids find birthday parties FUN!). She never wanted to participate in the games or activities, and she was unable to not tantrum while they took place. She tantrumed about the "Happy Birthday" song, hands over ears while rocking and shaking her head. Such fun! Thank goodness every party had cake; at least we had that!

Her own birthday parties and those for her siblings weren't quite as bad because I could tailor activities and food and noise to what I knew would work for her. But, she still tantrumed at the singing of "Happy Birthday," and she still perseverated about the parties taking place. And, she was always socially inappropriate about receiving gifts.

Gifts are confusing for Aspies. Young toddlers, of course, want the gifts for themselves, and they may even tell you when they don't like a gift that they've received, preciously honest creatures that they are. This is, of course, adorable and one of the great joys of parenting wee ones. When a 5 or 6 y/o engages in the same behavior, it ain't so sweet.

For an Aspie, I figure gifts work a bit like this. Aspie knows what she wants to receive. Aspies ALWAYS assume that everyone else has the same knowledge that they do because they lack social reciprocity. So, in Aspie's mind, Aspie wants to receive X, and givers know that Aspie wants X. When an Aspie then opens a gift that isn't X, she's terribly confused. When that happened for my Aspie (which was almost always), she would usually tantrum, say she hated it, or throw it.

When 4A turned 4, a friend stopped by to give her some beautiful books, thoughtfully selected for 4A who loves reading and drawing. Now, in 4A's mind, a "present" was a toy. Because she's an Aspie, she assumes that every giver knows that. So, when 4A opened these beautiful books, which were not toys, she threw them and tantrumed...for TWO HOURS.

From about age 2 to age 6, I refused to let 4A open gifts at parties. Those tantrums were easier handled without other around (for me and for 4A), and birthday parties were unbearable enough as it was. Fast forward to 4A's 6th birthday party. I was overcome with pride when she thanked each and every giver for their gifts. Now, you could ABSOLUTELY tell which gifts she liked from her tone and facial expression. But, she said thank you.

How did we accomplish this, you ask? Shortly after that 4 y/o book debacle, I started using a social story EVERY SINGLE time a gift was involved. Should've done it sooner, of course, but sometimes Mommy is tired, or hopeful, or busy. Oh well. When I did start using it religiously, it worked like magic. So magical, in fact, that she was able to say thank you at her 6th birthday party, even when she wasn't actually thankful for what she received. That was a BIG deal! And, that was, I think, the first party of hers that I actually ENJOYED. She even let us sing to her and enjoyed it when we did!

Here's the story that I used about gifts. (I embellished with drawings or clip art and put mine in one of those flip-book formats that I told you about.)
Here's another social story that I use when I teach kids about autism at Differing Abilities Day at my children's school. The kids are always so intrigued by this because they themselves, neurotypicals that they are, LOVE birthday parties and can't imagine how on earth a party could ever be un-fun for a kid. Before we go through this on the white board or overhead, I first ask a child to come up. I ask her what she wants more than anything for her next birthday. She usually mentions some ridiculous, over-priced Barbie or the like. I ask her to pretend that it's her birthday, and I give her a book. She usually gives me a funny look and says "thank you." Then, I pretend that it's my birthday and that I want a doll or a truck or whatever. I ask her to hand me the book and say "happy birthday." When she does, I throw it on the floor and tantrum. After that exercise, we read through this social story about birthday parties and talk about why birthday parties are hard for kids with autism.

Once 4A hit elementary-school age, I was successful in explaining to her that most kids think birthday parties are fun because there are games and snacks and cake. If 4A doesn't think that's fun, that's okay. She can always pretend. Or, she can just not go. Or, she can stay quiet. Doesn't really matter. But, what she may NOT do is tantrum.

These social stories, permission to pretend about her enjoyment, and a super-stellar behavioral plan from the most amazing behavioral psych in the free world made birthday parties doable and, arguably, enjoyable. I wish the same for you, my friend.

Thursday, October 20, 2011

Social story: substitute teacher

A teacher asked me if I had one of these yesterday, and I thought someone else out there in cyberspace might also benefit.

Aspies are very rigid, particularly with their routines. Change and transitions are hard for them. The substitute teacher is particularly tricky. Of course, most typical kids may try to pull one over on a sub or slack off for a sub. For an Aspie, it's more than that.

An Aspie can be taught, with behavioral interventions and reinforcers and extreme consistency, to follow her own teacher's directions. Once the Aspie masters this, she then can relax and tackle the tasks at hand. Once that initial hurdle of mastering a teacher's tone, style, smell, routine, and expectations is surpassed, an Aspie then can focus better on the work that's expected of her. When her teacher is absent, the tone, style, smell, routine, and expectations are not those that she's been taught to understand. Accordingly, the Aspie now has so much work to do to understand what this different person wants or means, that she can only focus on that. She may, then, refuse to do work, act out, stim, or generally be a mess.

Such was the life of my 4A when her beloved kindergarten teacher was occasionally absent. As the years progressed, substitutes became less problematic, but we still do struggle on sub days. Subs, hard as they may try and wonderful notes teacher leaves for sub notwithstanding, just can't (understandably, of course!) know all of the supports that 4A needs or why she needs them. Things that we have worked for MONTHS to establish as routine can (and do) unravel in an instant when the teacher isn't there to reinforce or behaviorally support the expectation.

Oh well. That's life. I always felt bad for the sub. Like being a sub isn't hard enough, right? Then, you've got to deal with this oppositional maniac on top of it.

Here's a social story that I made for 4A when she was in kindergarten. It worked BEAUTIFULLY! Remember, your Aspie lacks the ability to understand that socially it feels good to do a nice job for the sub when the teacher's out. And, wonderfully literal creature that she is, your Aspie does not know that she's expected to follow the substitute's directions unless you tell her exactly that. A social story will make the expectation that she is to follow the substitute's direction explicitly clear. (And, for 4A, it didn't hurt, of course, that her K teacher used the same (amazing!) sub each time she was out and that both the K teacher and the sub understood 4A and her needed supports very well.)


Sub days, if you have an Aspie, are VERY hard. Stay calm. Carry on. Blindly follow that behavioral plan. You will get back to where you were before the sub was there. It's likely going to take some work, involve an extinguishment/extinction burst, and generally be a pain in her teacher's (and your) ass, but you'll get there.

As an aside, I am working on two future posts: one on the basics of social stories for the non-ASD parenting crowd and one on using social story-like supports for typical children. I've gotten questions on both; stay tuned...they're in the works.

Tuesday, October 18, 2011

"Journey to DX" series, part 4: helping (and being) a friend

Many times, it's a friend who approaches me, looking for ways to support or help a friend who is starting the autism journey. The story is really always the same, though the details vary some. Friend's child seems different, friend is struggling about what to do, what's the best way to help the friend.

Again, I feel somewhat unqualified to answer this because it seems to me it's one of life's major, most important questions--how to be a good friend. But, I can share my experience with you, qualifiedly, of course. I will share but ONLY if you promise to accept that I don't have the answer and have no idea what I'm doing. Below, I will give you MY experience; and, it is just that...MY experience and not a statement or judgment on what other folks are doing.

Deal? Deal.

Okay, so then let's begin.

Helping a friend who's experiencing autism
When someone is beginning an autism journey, she needs all kinds of help, including words and actions.

Words
How best to help really depends on where your friend is in the stages of his/her acceptance, acknowledgement, and grieving about his/her child's difference or difficulties. This is a really tricky one for you. Your friend might not even know where s/he is, so how on earth can you know?

I always found it very helpful and supportive when a friend asked thoughtful questions or noticed that we were struggling. Not in the "your kid's a mess, what the heck is wrong?" kinda way, but in the "I see that something's off and I want you to know that I care" way. I was so hysterically convinced that I was doing something wrong, that her behavior was MY fault, that I was hyper sensitive to any statements that were even remotely critique-like. But, when someone gave me a hug and said "I know it's hard" or asked me about her treatment, that helped me a lot.

It helped me to know that people knew that it was serious and real and not something we were making up. It helped, in the beginning, to NOT receive parenting advice. Someone who noticed the struggle, acknowledged that it was a struggle, and used her ears more than her mouth in our conversations was the best help.

It may, honestly, be easier for you and/or your friend to wait until SHE opens the door. Once SHE mentions her fears or concerns or struggles, then you can offer her support.

But, it's okay to not wait for the open door, and I will tell you why. I will tell you a story of a friend who changed my life. I met this friend when 4A was about 4 months old in the lactation support group at our local hospital. Turned out that she lived in my neighborhood. Turned out that she was a behavioralist who worked with kids on the spectrum. I could've cared less about the latter, honestly, in the beginning because I just needed another breathing adult to talk to during the day. We spent LOTS of time together when our girls were babies. Look at them!
It wasn't too long into our relationship that I began to notice how different 4A was from other kids her age...missing milestones, hitting milestones WAY too early, etc. Most notably, 4A never really rolled over, and she never pulled herself to standing from a sitting position. She never crawled.

I will always remember it. We were at my house, and this amazing friend had the courage to mention another friend who had gotten services for her daughter through our local early intervention services office. This courageous friend wasn't heavy-handed or didactic about it, but she planted that seed. She followed up with me and encouraged me after I made the call. She always confirmed my suspicions of autism, even when family or strangers or doctors doubted.

It is because of this courageous friend that 4A is doing so well. That courageous soul gave me the support and encouragement that I needed to help my baby. Early intervention, you remember, is an ASD kid's best shot at a more typical life. This friend's courage and love for me helped that happen.

Would I have the courage to do that for another friend? I truly hope so. It would require me to take a leap of faith, step out of my comfort zone, take a risk. I hope I would have enough love and courage and peace to do that for someone else.

Words are the harder piece of support to provide. If you can't be honest and say them without judging, then don't. Your friend is struggling enough, and she doesn't need dishonesty or judgment on top of what she's already working with. If you don't have the strength to say them, then think them or pray them or write them.

Actions
A parent in the early stages of his/her autism journey needs a tremendous amount of help. Your friend is spending a LOT of his/her time calling doctors, emailing doctors, waiting for doctors, following doctors' instructions, keeping data, hand-over-handing most tasks that other children do naturally. Now, that's what your friend is doing during "business hours." After-hours, s/he's trying to manage a dissolved household, figure out how the heck to pay for treatments, crying and grieving, researching, and having trouble sleeping. And, this all doesn't include the constant worrying and wondering about what's wrong, how to figure it out, and what'll end up happening.

The things I appreciated most were the offers of errands, the meals that were delivered to my doorstep, the folks who offered to wrangle my younger children during appointments. Now, here's another tricky part for you, my friend. This friend of yours may be isolating him/herself, either on purpose or unintentionally because s/he is living so hard in the moment. I remember that I had to check-out for awhile. It hurt too much to be around parents of typical children, partly because I worried that they were judging me but mostly because it made me so sad to see the things that I thought my child would never be able to do.

So, if your friend isn't around much or doesn't ask for help, that doesn't mean that she doesn't need it. You need no one's permission to drop a meal on someone's doorstep, you know. Everybody needs milk and eggs and bread: drop 'em off. Pop in to unload her dishwasher (this was the NICEST thing anyone ever did for me...thank you, Mom). Give her typical kids a break; invite them to join you on a walk to the playground. Text her on your way to Target and offer to pick up what she needs.

Don't wait for a request, just do.

This leads me, in my typical roundabout fashion, to why I feel so unqualified to answer this "how can I help?" question. It really taps into the larger life-lesson of what it means to be a good friend, a decent soul.

Being a friend
Wait a sec'. Thump, thump, thump. There. I'm up on my soapbox. Ready?

I have the great privilege of having a few insanely courageous friends in this life. Friend1 lost both of her sons and her husband before she turned 60, and she's had breast cancer...twice. Friend2 has three sons, one of who was born with a rare form of drawfism and has undergone a LOT of surgeries and has nearly lost his life in the process. Friend3 has 4 children; the first was stillborn, the second is now an AMAZING 14 y/o, the third died three years ago at age 8 from medical malpractice, and the fourth is a miraculous and healthy 3 month old. Here she is with my youngest baby shortly after her beloved third baby would've turned 9.

All three of these ladies have experienced nearly unspeakable grief. They all continue to get out of bed every single morning and keep living. All three of them are kind and loving decent, good people, despite their heartache. Every single one of them has said that they lost friends when hardship struck. Because they didn't know what to say or what to do, friends just faded away. That, for me, shows unbearable cowardice.

So, your friend is experiencing something difficult. You don't know what to say. Okay, try this. "I'm so sorry for your difficulty. I don't know what to say, but I do know how to listen." Then, sit there and listen, even though it's uncomfortable or hard or not fun. And, instead of just listening, try to listen AND imagine, WITHOUT JUDGMENT, what it's like to be her. When you end that conversation, make sure that you go back for another one, and another after that. Keep yourself present in her life, not just about her difficulty but about her LIFE. Never you mind your worries or fears that you'll say something wrong; you can always apologize for that later, or (shocking!!!) learn something new, imagine that! And, hard as that difficulty that she's experiencing is, she's still living life, washing laundry, buying groceries, cleaning toilets. Perhaps you can help her with some of that. Maybe when you're helping her, something funny will happen and you'll help her laugh. Imagine that!

People going through hard times are just people. They have good days and bad days. They cry and they laugh. Most days or moments suck, but there are some good ones. Help that friend have more good ones. It might be uncomfortable for you. Oh well. It might mean that you don't end up washing your own floor this week because you were too busy washing hers. Oh well. "And oh my goodness!," to quote one of my fave law school professors, whatever will you do if someone comes to visit and your floor is dirty!?!? Get over it. I should hope they see that dirty floor and say to themselves, "Dirty floor? She must be a super great friend."

Your friend is having a hard time; she's not dying. Or, maybe she is. All the more reason she needs you to love her and take care of her and be present in her life.

And there's this whole thing, especially amongst women, about "breaking friendships." I hear a lot of that in my meetings with my troop of 3rd grade Girl Scouts AND amongst GROWNUPS on Facebook. Oh my. So problematic on both ends and on so many levels. Break a friendship? Why? Because someone hurt you? Because someone doesn't understand you? Because someone didn't act or respond in a way you thought was appropriate? My goodness. As a VERY wise person once said to me....how arrogant are you to think that this is all about YOU? Truer words might not have ever been spoken.

Being a friend to anyone, let alone someone undergoing difficult times, might be hard, might be uncomfortable, and might mean that you realize how short life is and that that realization scares you. Oh well. Get over yourself and get going on being a good friend. Life isn't perfect, God knows, and neither are people or friendships. Complex as that all is, I plan to die tryin'.

Monday, October 17, 2011

Dentist/doctor social stories

The dentist has been a LONG and laborious work in progress for 4A. It took us 2 years with a LOT of behavioral support and medicine to get her to walk in there, sit in the chair, open her mouth, and get an exam WITHOUT screaming. Crying=okay. Screaming=unbearable for all involved and makes exam virtually impossible.

We had been doing REALLY well for the past two years. In fact, she would sit in the chair while it moved rather than climbing in after it was positioned, and we accomplished Xrays AND sealant with no social stories and minimal hysteria.

Well, we've hit a bump. Over the summer, 4A overheard a conversation between a dad and a child about permanent teeth...to the tune of "there's nothing they can do to fix permanent teeth if they fall out." Egads! We put a lot of work in on that one, including calling our pediatric dentist, who kindly spoke to 4A, to confirm that there IS something that can be done and to verify that permanent teeth are REALLY hard to lose. We muscled past the anxious hysteria and perseveration and moved into a very long period of constant checking of teeth in the mirror to confirm that they were all still there and frantic feeling of teeth in the morning to confirm that they hadn't fallen out over night. In recent weeks, we seemed to have moved past the issue in its entirety.

Today, we had our regular checkup. 4A was really fine about it last night and this morning. Honest. I didn't feel the need to whip together a social story because she was very nonchalant about the whole thing. No crying, no perseverating, no opposition, nothing. Actually, there was even a bit of glee about missing a few hours of school and having ice cream for lunch after the appointment.

Oh my! Silly momma. First, they've remodeled the office. The waiting room is a different color, larger, and on the other side of the building. The exam room used to have an aquarium theme, but now it's overloaded with darling hot air balloons. The other ones didn't notice. 4A did.

Second, they've got a new hygienist AND a new dentist. The main dentist routinely hires younger dentists to apprentice, I gather, and she and I and her staff have spoken before about 4A's need to see the main dentist. My other ones can and will take anyone they get, but 4A just needs to consistency. Somehow, that message has gotten garbled, so we need to have that chat again.

Okay. So, new decor, new hygienist and dentist, permanent teeth debacle over the summer. It all added up to a regression. To her credit, she cooperated as best she could, only attempting to climb out of the chair twice. The new hygienist was FANTASTIC (as they all are there), and she knew about 4A's autism before we came in. She totally rolled with it, stayed patient and calm, and followed my behavioral lead. We came through it just fine, of course. Anxiety is never allowed to be a reason for avoidance for 4A (or for the rest of them, for that matter).

But, it brought me back, of course, to a time when exams were not so easy.

"Back in the day," I used to handle doc social stories in one of two ways. I'll share them both here in hopes that they help one of you out there in cyberspace.

Social story for doc visit: checklist or sticker method
As I shared in an earlier post, 4A's early years were filled with what felt like constant trips to the pediatric cardiologist, radiologist, behavioral psychologist, pediatrican, developmental ped, and a myriad of others. I remember a particularly terrible trip to the pediatric ER for suspected flu, but I digress.

In those early years before 4A could read, I found that the checklist or sticker method worked best. In a spiral-bound notebook (a sparkly one, if I could find it), I would list a different step that she had to complete with "calm cooperation" on each page. When she finished that step, she could check it off or put a sticker (preferrably sparkly or princess-related) on the page. With this method, I also used an immediate reinforcer in the office and after we left.

So, a trip to the cardiologist once looked like this (save a few more steps).

Here's how you do it.

(1) Call the office, explain the trouble your child usually has at such visits, and ask for an EXTREMELY detailed list of steps that it takes to complete the procedure. They're going to overlook the nitty-gritty and give you the big picture. Keep pestering until you have every single solitary step necessary on your list. They'll probably get annoyed with you. Don't let that bother you. This pales into comparison to how annoyed they'd actually be if you weren't doing this, and all annoyance aside (theirs and yours), this is going to help you and your child immensely. Also let them know about the checklist that you're bringing with you and remind them again when you get there. They're quickly going to realize that playing up the one-step-at-a-time method with your child is going to work better than the calm reassurances that they give to and that work for typical children.

(2) Write one step on a page. You can use pictures or clip art, if you have it. If you can get actual pics of the doc and/or the exam room, all the more better. I drove my ass MILES, more than one time, to snap pics of many an exam room. PTL for technology!

For 4A, the process of slapping that sticker on, scribbling her notes, and flipping the page gave her a huge relief that she was working her way to the end of the experience. I also counted the pages with her and read the steps to her in the waiting room before our visit. It made the expectations more tangible for her, and it allowed me to then countdown for her when we started the procedure. I found that reading it to her the night or morning before only lengthed the perseveration and frazzled my nerves, but you do it how you like.

(3) As you progress through the appointment, read only the next step. That step finishes, put on the sticker, turn the page. Very methodical. Remember how her mind works. Work with it, not against it.

(4) The last two pages of our book always went something like this. Next to last page: 4A earns X prize (a Barbie, a book, whatever. Something she LOVED, something cheap and portable, something that she REALLY wanted to lure her to cooperate). Last page: 4A and Mom will go do X (go to the playground, get ice cream, whatever. Something she enjoyed, something we could do together, something to help us bond and forget what we just went through).

(5) I will address this is a future post, of course, but just a quick word here about reinforcers. Lots of folks will sometimes refer to reinforcers as bribes. Call it what you like, my friend. A child with autism derives absolutely ZERO social benefit from doing a good job and lacks the ability to turn to you for comfort or reassurance. You have to recreate that artificially. A reinforcer allows you to create that artificially for him/her. Still worried about using a reinforcer? You absolutely can and will slowly phase out reinforcers. A good behavioral psychologist will teach you how. Over time, we were able to phase out the immediate reinforcer (Barbie, toy, book) and use just the activity reinforcer. Over even more time, we were able to phase out the activity reinforcer, as well. Over ever more time, we've been able to phase out reinforcers for doctor's visits virtually entirely. You'll get there. Slow and steady wins the race. Worry about TODAY, not tomorrow.

(6) Follow through, both with the appointment and with the book and with the reinforcers and with your system. Praise that ASD child, but please remember that your actions speak louder than your words. For 4A, bailing on an appointment because the hysteria was too much for me or the office staff to handle actually would have been a huge mistake. Because the extinguishment burst that we would have had to deal with on the next attempt would have been MUCH more intense than what we were experiencing at the appointment itself. We went through many appointment in a basket hold. A good behavioral psychologist will help you help your child.

I encourage you to stay calm and carry on. Focus on one page at a time and merely completing the procedure or visit, no matter how hard that is. Do not give in. Do not give up. You CAN do it!

Social story for doc visit: Flip book method
We eventually got to the point where we were able to work through the whole book with only a small reinforcer at the end. This made my life easier on so many levels, not the least of which was a MUCH easier social story to prepare.

For these flipbooks, I printed out a social story (with clip art or board maker images) and put one step in one pane or page of a cheapy dollar store 4x6 plastic photo album.

4A could read it herself (or I could read it to her) and just flip the page to the next step. These worked really well for us, and they were super easy to prepare and transport.

We used this flip book method for picture schedules of errands that we had to make in a given day and over summer vacation for daily schedules, which varied from day to day.

Here is a social story about a pediatrician's visit with shots. I simply cut out each step and one step on a page.

And, a word about bandaids and stickers. For my typical children, those things work wonders. They get a scrape and immediately ask for ice or a bandaid or a hug. They LOVE getting that sticker at the end of a visit. These things are utterly lost on 4A. Dr. Steve once described it to me like this: If 4A gets a scrape, it hurts. If she puts a bandaid on it, it still hurts. If she gets a hug, it still hurts. Because 4A has autism, she derives no comfort (which is a SOCIAL construct) from the typical measures I use to heal bumps, bruises, and little hearts. As such, that reinforcer was necessary to recreate that social feeling of comfort for her artificially.

Friday, October 14, 2011

"Journey to DX" series, part 3: data collection

When we last left off in our "Journey to DX" series, we established that you were going to accept in your head what you knew in your gut: Something's wrong with your child. Then, you were going to talk with your pediatrician and/or contact your local early intervention services office to get the ball rolling on some screening and/or assessment.

So, now you're waiting. And waiting. And waiting some more.

What to do in the meantime?

Begin collecting data. Tons of data. Like your life depends on it. "How?" and "why?," you're likely asking.

Why should I collect data?


Let's tackle "why?" first. Data is going to establish that you aren't crazy. It's going to give credibility to that gut instinct that you have about your child. If you're on a trip to China, you're going to have a LOT better chance of finding the nearest whatever-you're-looking-for if you now how to ask after it in Chinese. Same principle here. You want help with that crazy kid of yours. Docs speak in data. Throw them a bone.

It's easy to feel/think/say that your kid "always" does X behavior or "never" engages in Y behavior. The docs are going to need you to back those up with cold, hard data so that they know how to help you and your child. How often is "always?" What does "always" look like? By "never," do you mean absolutely never or very rarely? I think you're beginning to get my drift.

Moreover, that doc is going to spend mere minutes or hours with you and your child. You, God help you or bless you, are with that kid every single, solitary minute of every day (and, if you aren't, drag their care provider into the data collection, too). You KNOW this kid. Your data is going to get you a jump start on getting to where you really want to be...knowing what's wrong with your kid.

Many folks wait for weeks or months for that initial eval. They finally get to that long-awaited appointment, only to spend 20-60 minutes with the doc or professional. THEN, the parent promptly leaves, irritated as all hell that the doc or professional said, "Come back next time with data." Save yourself the aggravation, my friend. You have enough of that in your life.

There's another reason why you should start keeping data logs. You, as that lovely child's parent, are perceived as hopelessly subjective. Appropriately so, I figure, because you love that kid more than anyone else in the world loves him/her. Love is blind, remember? Unblind that love by using data. Data helps you take yourself, your perceptions, and your needs/fears/wants out of the equation. After all, this really isn't about you at all. It's just filtered through you and left to you to do the hard work...there's a big difference there, my friend.

How do I collect data?

So, we've established WHY you need to take/gather data. Nice. So how the hell are you supposed to do that on topic dealing with everything else you're juggling as a parent, a worker, a spouse, a daughter or son, a friend, a house manager, etc?

Unfortunately, you're just going to have to suck it up. You're going to have to do it because it's vitally important to your kid's treatment, eventual diagnosis, and participation in this life. You're going to have to leave your toilets dirty, turn an assignment in late, pass up an amazing opportunity, or bail on a coffee date with a friend. You should be starting to figure out by now, I hope, that you're going to miss out on and give up a LOT of things that folks with typical children otherwise enjoy, not the least of which are sanity, sleep, and an arguably clean home or appearance. It's alright. Never you mind about that, my friend. It's really, REALLY going to be worth it in the end.

You've decided to make time. Great. Now, what? Well, there's really no right or wrong way to do this; the world is a grey place, my friend...absolutes are for folks who have ASD. I'd imagine that you can Google "data collection forms for ASD," and there's probably something tailor-made out there. Go for it. Or, use your iPad or a pencil and paper (you remember those). It doesn't really matter. Just get started, for goodness sake.

Pick a couple of behaviors and track how frequent and intense they are.
I remember picking two things that bothered me the most and starting with them. For a few days, I wrote down EVERYTHING she did or said in those two categories. Made myself just about crazy. I was frantically scribbling in that notebook (I'm the old-fashioned type) all day long while trying to deal with 4A's constant tantrumming and perseveration and 4B's incessant newborn needs. Something had to give. Not one to give up breathing without a fight, I switched to tally marks.

So, every time 4A started into a bout of repetition ("I take it, I take it, I take it," over and over and over and OVER every time, EVERY time, she wanted to give me something) or a tantrum, I put a tally mark down (and, for awhile, I did tally marks for every repetition...she said that particular phrase ONE HUNDRED AND THIRTY SIX TIMES in one episode one day). That was a LOT of tallying, my friend. I started a fresh page for each day and divided it by morning, afternoon, and evening.

You do it how you like. Your method and the behaviors on which you collect data will reflect you and your child. The point is to do it. You should have some literal, written descriptions of what your kid does or says and you should be tracking frequency and, possibly, intensity.

Frequency is easy. Intensity is a bit harder. Dr. Steve once had me rate a behavior's intensity on a scale of 1 to 10. That turned out to be too ambiguous for me, so I used a plus, a minus, or a zero. Use an ABC or 123 method (and, perhaps sing a little Jackson 5 diddy while you do it, just to make it more fun). Who cares? Just start.

You also want to write down some stuff about YOU. When the behavior happens, what were you doing before it started? How did you handle it? What was the result? So, to give you an example, when 4A started on a screaming tear, I would describe the triggering event (she flipped her shit because we didn't get the IDENTICAL cart at the grocery store that we had last time; oh yes, she had them memorized), what I said and/or did ("I'm sorry. This is the one they have today. We'll have to make do."; put her in, strapped her down, and hauled ass through the store while ignoring her incessant screaming about the damn cart and the stares from all the other shoppers for the FIFTEEN minutes we were in the store, seething and pissed off), how long it lasted (I used the stopwatch function on my cell phone; oh, and they never really "stopped," they just morphed into another one), how intense it was (plus, zero, or minus), and how/when it ended. I gave several of these written examples to accompany my tally marks.

Any info you can provide about routines, caretakers, schedules, ANYTHING will help. It all helps. And, it keeps you busy.

Here are a few examples of what I did. REMEMBER, please, that yours will look different. There is no one right way to do this, and I am NOT an expert or a specialist or a doctor. I'm just a mom, sharing with you how I kept myself sane.

This first one is 3 pages, and this is what I walked in the door with at our first appointment with our beloved Dr. Steve. I told you we were desperate!



This is some data that I subsequently collected for Dr. Steve.

I also VERY strongly recommend video. SHOW the doc what that behavior really looks like. SHOW her what you are actually doing when the behavior occurs. SHOW her that you are serious. Video is objective. Your feelings, insecurities, irritations aren't included in the video in the same way that they would be in a description. If I showed you a video of that trip to the store (or any of the other hundreds just like it), you would just see that. You wouldn't have my sarcastic tone, irritation at the behavior, and insecurities about my parental prowess with it. The more objective you can make this, the better off you're going to be. Read between the lines here...the more data you collect, the quicker you'll get to where you want to be, the more accurate the help or diagnosis will be, and the more support you're going to get.

Worry about changing your method or what you're tracking later. The doc will give you direction. But, for now, just start collecting. It's going to put you one step closer to what you REALLY want (help, a DX, whatever), AND it's going to make you feel like you're being proactive. That, for me, was a lifesaver.

Thursday, October 13, 2011

Reality check

Man! I have been SUCH a grouch today. GGGRRR!!! I'm tired and worn down from the bake sale, all four of my kids have been sick (and were home sick for two days), it's rainy here, and I haven't had a break in awhile. Wah, wah, wah. Poor me.

Took a little outing with my youngest two girls today. 4C has a severe peanut allergy, which requires follow-up periodically with her outstanding pediatric allergist. So, I got 4A and 4B on the bus in the drizzle, inhaled my coffee, got 4C dressed for ballet but packed her school clothes and snack and "homework," grabbed my store list and took off, like a shot. Pulled into the parking garage at the hospital. Grumble, grumble, grumble. So much to do. Cold and wet out. Wah, wah, wah. All of the sudden, 4D starts running and giggling, holding her older sister's hand to accompany her to her doctor's appointment. That snapped me out of my whinefest pretty quick.

I had simply put that 18 month old in the car this morning, never told her where we were going, probably forgot her snack and drink but remembered a bedraggled and beloved baby doll, pulled her out of the car, plopped her on the ground, hollered at her to hurry up, and off she went. When 4A was that age, I couldn't take her ANYWHERE, and I really do mean anywhere, without a full-blown hour or so of screaming and tantrumming. Whether we were going to the doctor, the grocery store, the toy store...didn't matter. The very mention of leaving the house sent her into a screaming fit of epic proportions. I know now that leaving the house meant a WHOLE host of unknowns (sights, sounds, smells, and activities) that upped her anxiety, not to mention that there would be overhead lighting and noise and she had to wear clothes and shoes. Too much. For her and for me. For YEARS, I would spend days planning out the shortest and simplest of trips, making sure that I had everything ready, that I was absolutely willing to muscle through no matter how hard and how long she screamed, and that I was prepared to shrug off the stares. We tried visual picture schedules of our stops, we tried social stories about what to do and what to expect, we tried incentive systems. Nothing worked...for a LONG time.

So, seeing that sweet, chubby-cheeked youngest girl of mine skip and squeal after her sister, happy just to be along and be going somewhere, made my heart soar. Look at how happy she is, just to be there and with her sister.

Next, the nurse calls 4C back, and, while I'm wrangling 4D, the nurse, in about 22 seconds flat, takes 4C's temperature, height, weight, and blood pressure. 4C does everything the nurse asks without complaint. Nurse is complimentary to her and me on 4C's behavior. She gives 4C and her sister THREE STICKERS EACH for being so "good."

Second reality check of the day. 4A spent a LOT of time in doctors' offices at that age. She has a congenital heart defect, which required EKGs and echos. She had a bladder defect, which required voiding cystourethrograms (VCUGs) and kidney ultrasounds. She saw developmental pediatricians, neuropsychiatrists, therapists, and behavioral psychologists of all kinds for what we know now was/is autism. Holy shit! What a trip all of those visits were. If running to the grocery store to buy diapers and a loaf of bread in 48 seconds elicited screams to the level of near hysteria, you can only imagine what doctors' offices produced. EGADS! It was so bad that one radiologist even wrote on a report that 4A refused to void for TWO HOURS and was "inordinately obstinant and oppositional." Real helpful, asshole. Tell me about it.

One time (at band camp...I couldn't help myself), we took 4B to an emergimed-type place where they took a rectal temp. For MONTHS, 4A would SCREAM, put her hands on her ears, close her eyes,and shake her head while repeatedly yelling, "They're not touching my butt; it's not my turn; They're not touching my butt; it's not my turn" (over and over and over and over) every time to went to a place with overhead lighting. Target, the library, the grocery. Such fun! And, SHE wasn't even the one who had the rectal temp taken.

Every doctor and nurse that we saw, save 2, were noticably and understandably irrirated and perhaps overwhelmed by what 4A presented in their offices. And, they treated us differently because of it. It's amazing how friendly and nice office staff are to you when you have the cooperative kid. Walk back in that office with the uncooperative one (and I have...MANY TIMES), and it's a whole different story. Like I somehow caused the uncooperative one to act like a maniac, any more than I caused the cooperative one to be an angel. Give me a break.

So, that was reality check #2 for the day.

We whip out of the doc's office, run to ballet class, run back to the car in the rain to slip out of the leotard and into school clothes. Start to eat sunbutter sandwiches and cheetos in the car on our way to Target. Because, I'm just crazy enough to try and cram a 45 minute errand into a 15 minute spot in an otherwise insane day AND in the pouring rain. I'm grumpily dragging my ass and theirs through the aisles on a hunt for Spongebob mouthwash because that is the ONLY kind we can use without whining around here. Wah, wah, wah. And, then I heard it.

Now I didn't really hear the screaming. I guess I probably actually did but mother of 4 and mother of a kid with ASD that I am, I promptly tuned that shit right out. What I did hear was the lady next to me. She said, "My goodness. I can hear that child screaming from across the store for almost 15 minutes now. I wonder why his mother can't get him quiet."

This third reality check, friends, actually froze my heart.

I have been that mom. Not the one who commented but the one with that screaming kid. SCREAMING! Flapping, covering ears, perseverating, repeating, kicking, screaming. In a store. The whole time we're in that store. While everyone stares. In my head and heart, during those trips, I was sort of in the zone with 4A, following the behavioral plan as best as I could in the moment, steeling my resolve to get through the damn list and haul ass outta there. It was always only once I got to the car, or more likely once I dragged myself to bed at night, that I felt those stares and those comments. They were so terribly hurtful.

At the time, I think those stares and comments (spoken or implied with "looks") were hurtful because I worried that people thought I was a terrible mother. Now that I know that my child has autism and that I am my children's mom (not a good one, not a bad one, just the one that they happen to have who's doing the best that she can in any given moment), I realize that those stares and comments hurt because of what they mean for my beautiful babies as they grow.

What those stares and comments mean is that different is unacceptable. Different is not okay. Being different is something you can control. Different is something your parents can fix. Different is sometimes too shameful to speak. Those things break my heart, for my babies, for our world, and for my beloved 4A. Because they are untrue and because they hurt.

So, I did, in Target today, what I prayed a mom would do for me way back when. I turned to that lady, smiled with genuine kindness and sincerity, and I spoke the truth. "I would imagine that the child has autism or a sensory processing disorder, and I bet her or his mother is doing the best she can." And, I walked away, quietly whispering to the two typical girls in my cart that life is hard for everybody, that everybody has trouble with something or things, and that everyone needs understanding and kindness.

Tuesday, October 11, 2011

Success

Our big bake sale was an ENORMOUS success!

We were very busy almost the entire time (we were open from 7:30 am to 4 pm). But, I did find a moment to grab a bite with the guest of honor.

The grilled-to-order hotdogs and basket raffles were a nice addition. Many folks we knew but LOTS we did not. :)

4A did the face painting. She even made 4Daddy a "two face."

4B ran the "fish pond" game (although I don't have a picture of him, just 4A and her grandpa "catching" a "fish;" 4B was on the other side, clipping a prize to the clothespin hook each time it was cast over and giving it a tug).

4C did manicures...LOTS of LONG manicures with LOTS of sparkle.

4D rolled with the punches, of course, even letting 4A paint her up like a doggie.

Mostly, the bake sale was a success because my children got to experience first-hand what it is to work just for the benefit of someone else with nothing to "gain" for themselves. They had a blast! They were very proud, and I was even prouder of their generous spirits.

Oh yeah, and did I mention that we raised about $1700 plus at the sale? (which puts us at $2200 and counting for the year.) And, no one asked to keep it (although, 4B did comment that it probably was enough for the Lego Cargo Train he's dying to have).

Saturday, October 8, 2011

Bridging

I've been running around like the proverbial chicken without a head. 8 batches of cookies, 3 batches of brownies, 72 chocolate covered pretzel sticks, 19 batches of bread, 3 cakes, 2 batches of muffins, 2 batches of cupcakes (and that's not including what my two divine baker elves are whipping up). 9 raffle gift baskets, a regular raffle, 3 carnival games, beverages, hotdogs and fix in's, theater popcorn with machine. Oh yeah, and a f*cking partridge in a pear tree.

I love doing this bake sale on so many levels. Not the least of which, of course, is benefiting an amazing organization, Autism Speaks, that works so hard to level the playing field for families living with autism, like mine. I love working alongside my children to show them what it is to do something for someone other than yourself. I love celebrating 4A and her amazing journey. I love baking. And, apparently, I love biting off more than I can chew (and irritating the shit out of 4Daddy in the process).

Six weeks in the making for our second annual bake sale.

But, I realized this morning, as drank my coffee through blearly and half-closed eyes while baking yet ANOTHER double batch of banana bread, (and only to find out after the fact that I forgot to add the sugar and had to pitch the whole thing and redo....yes....really) that this bake sale has been a lifetime in the making. Several lifetimes actually. Mine, 4A's, and my beloved Grammy's.

Grammy was the real deal. Grammy always helped, no matter what or where with whatever was needed. She always had time to listen to a friend or whip up a pie or a batch of cookies to help a cause. In fact, Grammy's pies were the most coveted item at church suppers. So coveted, in fact, that many folks, including my other grandmother, would go through the dessert line first to make sure they got a slice of her pie.

There's really not anything Grammy ever made that wasn't good. I should clarify that..nothing that she BAKED that wasn't good. I could absolutely do without her scrapple, pork and rice in cabbage, ham salad, or pickled beets and eggs. Way without, in fact. But, her baking. Oh my! "Soft cookies" (which are like little fluffs of buttermilk cake), "dogfood cookies" (no bake peanut butter, chocolate, oatmeal delights, lovingly named for their appearance), ginger cookies, Dutch apple pie, kuchen (sweet dough cinnamon rolls and bread), crescent rolls. The list is almost never-ending, but those are my personal faves. And, she taught me how to make them ALL. And, make them I do!

And, here's a funny thing I realized about Grammy a few years after she died. She really DID have your favorite cookie coming out of the oven every time you came over. Honestly.

Oh, and Grammy smelled delicious, just like her house. A combo of Aquanet, Listerine (the brown, original kind), and baking. She gave amazing hugs. She had really cool, knobby, well-used hands. She was enlightened and young for her age.

She loved to sew. She was meticulously organized. She, like all good folks who lived through the Depression, never wasted a thing. Ever. She loved people, and she prayed for them...whether they needed it or not. She was who she was...organically. Not because she worried what people thought of her but because she was really comfy in her own skin. Although, much as she loved golf and didn't judge folks, I figure it's a good thing she passed before Tiger Woods' secret got out. I'm not sure even Grammy could've not judged that one.

Grammy met 4A, and oh how she loved her, like she adored all 19 of her great-grandchildren (and would've adored 4D, the 20th, had she known) and 9 grandchildren. And, I know if Grammy had known about 4A's autism, she would have gotten "it," even in her elder years. She would have prayed for us, 4A and I and the rest of our family. Grammy's quiet and deep faith was her core and, of course, the reason she was so comfy in that skin.

I miss her terribly, and even though she's been gone almost five years, I think of her and miss her literally every day. Especially this past six weeks, when I've made and remade many of her delicious recipes, watched my hands travel over dough and flour and see hers in my mind's eye, walked into a house that smells like hers (minus the Aquanet and Listerine).

Those recipes and these goodies that my kids and I have been making keep her present in our daily lives. That and her flour scoop and teaspoons that I use every day, including this morning.

I realized this morning, in my exhausted and worn-out state, how wonderfully lucky I am to have had both of these souls in my life, Grammy and my 4A. One taught me by example how to be at peace with myself and my life. The other called me to remember those lessons and put them into daily practice. Each has brought me closer to the other and to the person I ultimately hope to be.

It is an honor to be the bridge between these two amazing souls. A gift to be able to call them mine.

Friday, October 7, 2011

Social stories about little stuff and big stuff

Good morning.

Had to drag these out and dust them off again this year. Thought they might help someone out there.

Here's one about telling the truth from kindergarten.


Here's one about paper clips from first grade.

Here's the one from today.


Enjoy!

Thursday, October 6, 2011

Silver lining

Oh, it's always there, that silver lining, even on days like today. Really shitty, sad, scary days. It's always there. Remember how I told you once before that we'd talk some day about what to do with those terrible depressed feelings? We will, but here is a glimpse of what it looks like on the other side. That side where it's bright and doable and hopeful. (And you WILL get there.)

I don't know that I'm ready to rehash all of the specifics yet, but suffice it to say that today was a really rock-bottom day for 4A. 3 behavior tickets at school...most she's ever gotten. A little bit of it is extinction burst junk (the "worse" before the "better" in the "it's gonna get worse before it gets better" saying: teacher has tightened the screws and upped the consistency, so 4A has to push back harder to test the new system). I understand that. I understand that the expectations (social, academic, and responsibility) have increased exponentially this year. I understand that we're in that dreaded window of first-semester mayhem.

But, understanding notwithstanding, she still scared the shit out of me today. Deep, awful, scary, pit-of-my-stomach fear. I know now after a conversation with Dr. Steve (and I'm pretty sure that I knew it in the heat of the moment, too, but it feels trustworthy now that he said it, too) that she didn't really mean what she said. That she was saying it more because of her lack of social prowess and because she desperately wanted to avoid the consequences of her behavior and the conversation we had to have. But, she scared me nonetheless. In a way that I haven't felt with her in at least five years.

Yesterday, her amazing classroom teacher took a stand with her. It was a hard stand to take, and the teacher did it beautifully and unflinchingly. But, the teacher was a bit weepy (after the fact) because it felt counter-intuitive and was very un-fun. I hugged her and told her I was proud of her. 4Daddy and I talked last night, in quiet voices, about having been in the teacher's shoes before. Having to lock that beautiful girl in her room and listen to her scream for HOURS to get her to stop certain behaviors. It turned out to have been the "right" thing to do because it worked, but it felt scary and miserable and mean at the time. Having to physically restrain her on a toilet seat until she could stop tantrumming; again, turned out to be the right thing to do because it worked, but it felt scary and cruel and wrong at the time.

With each of these hard things, I've gained confidence, with her and in myself. It's strengthened my character, my faith, and my love for her, ironically. But, that doesn't mean that it didn't suck.

So, on a day like today, I remember what it felt like to feel so hopeless and miserable and scared. I know now that there's always a silver lining, but let me tell you what it was today, on this shitty day.

4B, my sweet and sensitive boy, saw what a hard afternoon I was having, so that sweet boy, unbeknownst to me, went up and took a shower and got into his jammies BEFORE supper because he didn't want to make extra work for me. And he had the full heart to tell me that with a hug. My beloved pediatrician interrupted an office visit with another family to immediately return my call, and she gave me the information I needed but also hugged me, over the phone, with words of encouragement and empathy. 4Daddy broke state law to call me on his horrible commute home and offer really honest and strong support and encouragement and reinforcement. Our beloved Dr. Steve called, probably making him late to get home to his own family, so that we could resolidify our plan and resolve; he reassured us and told us what to do and how to handle this new behavior. A beloved childhood friend emailed me to let me know that she's been thinking of me behind my back, wishing for the very thing that I had been asking for in my own wishes.

That's all silver lining, my friend. On today, a terribly bad day. Tomorrow's going to be an easier and better day because of the work that I had to do today. The phone calls, the emails, the on-the-fly behavioral plan making, the tears, the fear, the hurting heart and ears... It's all going to be so worth it. Maybe not soon. Maybe not in the way I hope and pray for. But, it is going to get better. It always does. Always.

And, tired and exhausted as I am today from being a mom, wrangling 4C to her first dance lessons and school, having 4D on me all day like a toddler tumor, baking and cutting and pasting and listing and organizing for our big bake sale on Sunday, dealing with my 4A crisis, my cup runneth over with support and love and peace. Every day should be this wonderful.

Wednesday, October 5, 2011

Lemony gold

I have time for this like a hole in the head. But, inspiration struck, and I couldn't shake it.

People say to me ALL THE TIME stuff like "I have no idea how you do it; I could never do it" or "you have the patience of a saint" or they offer condolences or hugs or sympathy. I humbly appreciate and do my best to accept all, but I don't really need them.

Lest I sound ungrateful, allow me to me explain.

Of course folks don't know how I do it, just like I don't know how they do their amazing feats of parenting or navigating life. Both are VERY hard and don't have a roadmap. I can tell you how I do it (and if you really want to know, ask me privately...any time!), but the really more important part is that you can and would do the same exact thing...even if you didn't think that you could or even if you didn't think that you wanted to.

Take, for example, the colicky baby (had one of those, too, and thank GOD it was only one). People say they couldn't stand that or couldn't deal. Of course they would. It's your baby, for goodness sake. You have to feed it, change it, and bathe it, just like any other baby. The fact that it never shuts up is maddening, exhausting, and depressing, but you take care of it just like any other baby. You just go without...without sleep, without calm or quiet, without clean laundry, without sanity, without a shower. Whatever. You do it because you have no choice.

Having an ASD kid is the same thing. You've gotta take care of that kid. No one likes an asshole. When your kid acts like one (whether or not s/he has autism), you do whatever you can to de-asshole-ify him/her. When your kid throws a toy at another kid's head, you take that toy away, put your kid in time out, talk to your kid, whatever. You DO something about it. Autism is exactly like that. Different scale; same principle. The harder the kid, the more the work; the harder the tasks, the greater the reward. When that colicky kid finally shut up, do you remember how awesome you felt?!? Same thing with an ASD kid; you just have to do a lot more work for that same feeling. But, work is work. Life is life. Kids are kids. Hard is hard.

I don't have patience. I have peace and support. Two very different things, my friend. I lose my shit. I yell. I get frustrated. Oh well. That's life. Life ain't always rosy all the time. Lots and LOTS of people are going to yell at and be frustrated with my kids during their lifetimes. If they experience that first with me, someone who loves them immeasurably and unconditionally, perhaps it won't hurt so bad when someone else does it. And, that, my friend, is what therapy is for, and I'll find them the very best there is available; I promise! ;) I'm humanly imperfect, and I do the best I can. Just like you.

As for hugs, sympathy, and condolences...Hugs are always nice (unless you have an ASD). I don't really need sympathy. My dear friend who has stage 3 pancreatic cancer probably does. My friend who just lost her bestie to stage 4 colon cancer definitely does. My dear friend who's husband died unexpectedly at a young age and left her widowed with two young boys may have. My friend who's had to watch her baby endure countless surgeries might. A family with autism doesn't. What they do need is your genuine understanding. If you can't give that, and it's REALLY okay if you can't (nobody likes a faker), then don't say that you can. We can tell the difference. Our kids are the ones with social impairments, not us. Condolences? Nothing bad has happened to me or my baby. She's healthy and smart and beautiful and funny and creative and talented and way cool. I'm her momma. How lucky am I?! She requires some extra work, sure, but can't we all stand to work a little harder? Hard work always yields a greater reward. And, by reward, in this instance, I mean a child who can function in an age- and socially-appropriate fashion. That, for me, is the holy grail. That my hard work might someday (or currently) yield that result is the most amazing gift in the world. To watch those things occur over time in a non-spontaneous fashion as the result of really hard work renders a sweetness that is incapable of description.

Now, there's also this whole business of "God only gives you what you can handle" and "God saves the hard ones for the special people." I'll let the theologians wrangle with these. But, secularly and subjectively, I can tell you that I needed this kid. Something awful. I spent a LOT of my life doing stupid shit for the wrong reasons because I didn't know who I was and couldn't figure out who I was supposed to be. 4A smacked me upside the head and made it all clear. Thank GOODNESS I did get her. I can't imagine what a mess my life would be if I hadn't. If by "special," you mean that I'm better equipped to handle this than you, you are so wrong. I don't know what the hell I'm doing, but her doctors do, and I know how to listen. As for the courage to listen and do, well that comes from something WAY beyond me. And, that, too, is a subject for a private conversation.

So, my daily life and existence isn't really so much different than yours. I have to do all the same stuff that you do as a parent and a person. Sometimes I just have to do it more frequently or in different ways. But, as my Thai sister-in-law says, "It's same-same."

We're talking about WAY more than making lemonade outta lemons here, my friend. We're talking about seeing and describing those lemons as little nuggets of gold that you get to hold and keep and cherish and struggle with and cry about. Whether or not they turn into lemonade ain't really the point.

Monday, October 3, 2011

Put in my place

I think I might have been feeling smug. All those posts about ASD challenges that we've already weathered were making me feel pretty confident.

Leave it to my Aspie to put me back in check.

Oh how I dread weeks 3-6 of the first semester. I go in there over the summer to meet with the special educator and teacher to review the IEP and let them know the hurdles of the former year, and they smile and nod and take notes, extremely serious and ready for battle. Because 4A's DX comes from the place that it does (and we'll talk about this in our "Journey to DX" series later), everyone takes it seriously and treats it for what it is: accurate and legitimate.

Fast forward to weeks 1-3, and everyone's looking at me like I'm crazy, have three heads, and have never actually spent time with the child I described. I nod, bite my tongue, and brace myself....because I know what's coming in a few weeks.

WHAM!! Week 3 hits, and it starts. This year, in THIRD grade, 4A, during those dreaded weeks, cut her hair, lied and said she hadn't done homework when she actually had, talked a million times when she wasn't supposed to, and forgot homework materials three times. Now, we're all back on the same page. They've realized again that I'm not crazy! ;) Well, I am, but not about her.

Why does this happen every year? I'm not a teacher, but I am a good listener. Here's how Dr. Steve describes it. Every year, the teachers are appropriately a bit lax or slow in enforcing and teaching the classroom rules. The children (typical ones) need explanations of the rules and routines, repetition of the explanations, reminders, and encouragement. After about three weeks, the teachers appropriately expect that the children (typical ones) should now "know the drill" and abide it accordingly. Appropriate and reasonable, of course. Absolutely miserably unfortunate for an Aspie, mine in particular.

Can't be helped, of course. There are way more typical kids in a class than ASD ones, and the majority can and should rule. 4A has an IEP which means that even if the majority needs one thing, 4A is entitled to her thing. But, she's a tricky one, that 4A. She seems so typical now, after all these years of intervention, and she seems to get the drill and roll with it just like the typical ones those first few weeks.

Week 3 hits, stronger or more consistent or more accurate enforcement of the classroom "drill" occurs, and she goes into full-out testing mode. Did you really mean that I'll get a ticket if I don't do my homework? Did you really mean that I have to be quiet when you tell me to? Did you really mean that I'm responsible for my homework stuff? What will you do when I cut my hair? Why does she do this, you ask? Dr. Steve has described it to us like this...4A largely lacks the internal desire to please or do the "right" things. There's nothing in it for her to do it the right way. Doing it the right way, for a typical child, creates the FEELING that the teacher likes her or that she's a good student or that she's made her parents happy. Those FEELINGS are all social conceptions. Because of the neurological impairment caused by her Asperger's, 4A does not experience or understand those social feelings in the same what the others do. If she does the right thing, and the teacher thinks she's a good kid, 4A probably doesn't feel that unless the teacher says so. Moreover, even if she does the right thing and the teacher thinks she's a good kid, if the teacher doesn't say that aloud or doesn't say that aloud EVERY SINGLE time, then 4A might not understand that she actually understand that she is a good kid. So, there's very little for her to gain from doing things the right way. This explanation has helped me a A LOT.

When 4A does the wrong thing, she gets attention for it, guaranteed, in the form of a "talking to" (which, as an aside, NEVER works because she can't make the social connection that it feels bad to have someone disappointed in you), a ticket, whatever. How that girl LOVES attention...positive, negative...doesn't matter...she wants it. That's TERRIFYING as I think of her progressing into adolescence, but I intentionally live in denial about that right now. I have to survive, my friend.

But, I've digressed, I think.

Now, this stuff, this testing around week 3, I've come to learn, is the easy stuff. I expect it, I know what to do about it, we all get back on the serious page, and we put the kabash on 4A with extreme consistency at home and at school. Kid-stuff, really. Easy as pie.

Handling this and posting about those early years was making me feel pretty confident in my ASD prowess, knowledge, and understanding. There's none of that, in Aspie world, my friend. 4A put me right back in my place.

She's showing signs of social struggle and depression. Aspies are prone to depression about the whole "not fitting in" thing, and while there's VERY little data on girl Aspies, it stands to reason, says Dr. Steve, that girl Aspies will suffer even more so because the whole social realm is more important for girls than it is for boys.

4A's bestie spent the night a few weeks ago, and after lights out, bestie said she wasn't having that much fun because they hadn't played the piano or the iCarly game yet. 4A cried hysterically and inconsolably for FORTY FIVE minutes, in front of her bestie. Now, a typical kid would've had their feelings hurt, of course, but would've held it together until the friend left OR cried a bit because of hurt feelings OR, perhaps if socially strong, suggested that they do those things in the morning. 4A went in a downward spiraling fit of hysteria that bestie had decided she didn't want to be friends any more. Not that bestie MIGHT decide not to be friends anymore but that she HAD decided not to be friends anymore because she wasn't having optimal fun.

4A has been making lots of off-the-bus comments that she doesn't have friends or that kids think she's weird. I asked the classroom and reading teachers for help; what does 4A look like socially in school? Apparently, 4A is quirky and funny, the children consider her part of the team but accept her 4A-isms as quirky, and 4A keeps to herself...a LOT.

The other night, when 4A was stomping and screaming and flailing while I brushed her hair because the tangles hurt, I, in a fit of anger, said, "What is your problem?" Hysterical meltdown #2. Carried on for almost near an hour. Saying she hated her life, wish she could get hit by a bus, wanted to make herself sick. Inconsolable. I tried to talk to her for awhile (even though I KNOW that doesn't work), and she was still so hysterical that I put her in her room and told her that she could come out only if she got calm. Came out calm sometime later, after disrupting ALL the other children who were trying to settle to sleep, and was still unable to have a coherent, non-hysterical, non-dismisal chat about things.

When we don't know what to do, we email Dr. Steve. Thank GOD, that man always knows what to do. Always. I gave him all of this info, the teachers' observations and ours, and he's "greatly concerned." He's NEVER said that before. I'm not freaking...really, I'm not. But, I am feeling weary. So, I've dug into my toolbag of faith and support, and I'm getting through. And, we're getting a plan in place. It really will all be okay. It just takes LOTS of time, tenacity, elbow grease, and patience and some money. We can manage all of those things. It will all come out alright on the other side.

But, this all reminded me that I really have no idea what I'm doing. None. I try my best, of course, and most of the time, especially with my typical children, it all turns out alright, but I really am making it up as I go along. I know where I've been, of course, but I can have no idea of knowing where I'm going. With my typical children, I have a pretty good of where I'm going idea based on books or magazines that I read, chats with other parents, watching the older siblings, etc. But, with 4A, it's all uncharted territory. I never know what's gonna come up. Never.

So, please forgive me if/when I sound smug or know-it-all-ish about those earlier years. Rest assured that I really do have no idea what I'm doing.