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

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

Tuesday, August 30, 2011

My gift

Sorry that I've been MIA. Between our recovery from Disney and Hurricane Irene, I haven't had much time for blogging. 

And, we've been getting ready to go back go school, which brings me to my reason for this post. I just went through my yearly back-to-school IEP prep with 4A. While that prep itself is now quite simplistic, the emotions that it delves up are always a little jarring for me.

4A has an IEP (individualized education plan) because of her autism. In a nutshell, the IDEA (Individuals with Disabilities in Education Act) provides that any child with a disability that substantially impairs her learning is entitled to individualized education.

For 4A, this means lots of behavioral supports, like placement with a teacher who uses a class-wide behavioral system, seating near the teacher, an individual behavioral system to travel with her to specials and areas that don't use her class wide behavioral system, checklists for starting work, timers, visual cues, etc. So, even though the IEP lists these supports, the IEP goes into no detail as go how or why they're used. As such, each year, I promise to get together with her incoming teacher before the start of the school year to prepare her for what she's getting with 4A. It always seems that we've ironed out all of the kinks by fourth quarter, and then we have to start all over again. I try to fill the new teacher on where we left off last year, where I suspect we'll have trouble this year, and any changes to the behavioral plan over the summer. I also really like the new teacher and special educator to know that we consider 4A and our struggles and joys with her an open book; I find that this meeting really goes a long way towards opening candid communication with the school team. 

Every time I have this meeting, it takes me back down memory lane. To a time when 4A was essentially asked to leave her preschool, to a day when her docs thought she may not attend a mainstream school, to a time when I hated being her mother. To be clear, I've always loved her, but there were big periods of time where I didn't like her or my job in being her parent. Back then, it all seemed really hard, confusing, and downright unfair. I worked my ass off in therapy for a few years to get square with being her mom, and her docs and her medicine have made her autism extremely easy to manage now, but this time of year always harkens me back to that dark, bleak time.

If you have a child with autism or one that you suspect has autism, I know where you are. It is true what they say...that being a parent of a child with autism is hard, that you come to terms with autism in stages, and that it will get easier. But, in those early moments, it's terrifying, depressing, and sad. I remember. I empathize.

The stage of the journey that we're in now, some six years later, is peaceful, funny, and almost joyful. I am content with who she is, who I am as her mom, how and why we got here, and my role in her autism and treatment. I'm also extremely proud of her and eternally grateful that I got her. 

This contentment and peace did not come easily or quietly, my friend. I can't tell you how many times I was afraid that we wouldn't make it (her, myself, and my marriage), how many nights I cried myself to sleep and told myself that if I just tried harder tomorrow that things would be different. I also can't tell you how many times and how intensely I felt like I was doing something wrong, that I was to blame for her behavior and struggles.

Having typical children after her helped a lot. Counseling helped a lot. A very thorough and strong support team of docs helped a lot. My parents helped a lot. My faith helped a lot. Working through it all with my husband helped a lot. 

I can't tell you what will work for you, but I can tell you that you should try everything you can think of, read about, or have offered to you. Trust your gut.  Be okay with being mad. Swallow your pride and take a break when it's offered. Learn to ignore the stares in the grocery store. Affirm for yourself that YOU know your child and that something IS wrong. Don't let people, even those in your family or those that love you or those that mean well, dissuade you from what you know to be the truth. Autism is not a bandwagon or a excuse to do a shitty job as a parent. I'll tell you this...from a behavioral standpoint, I do a much, MUCH shittier job with my typical children than I do my spectrum one, and that shittiness always turns out a better product. No parents on earth are more consistent, patient, and calm than parents of spectrum kids. I once had someone who I love and respect a lot tell me that 4A's problem wasn't autism but rather that I didn't make her do enough for herself. How I prayed that it really was that easy. I kept hoping I'd find someone who would tell me what a moron I was as a parent and how to do things the "right" way so that this would stop happening. This is not something you did or didn't do. This is autism. Welcome to the "club."

I don't know how or why kids get autism. I don't know how vaccines play a role. I don't know why the numbers of kids on the spectrum are so high right now. I do know that my child has autism and what our journey has been. That journey will be different for you.

You will make it. Things will get easier. You will find the right doctor...not the one who makes your child "stop" (how HARD I looked for THAT doc) but the one who helps you help your child manage her autism. You will learn to like that child. God willing, you will be able to look at the presence of autism in your life as a gift. I certainly do...now.

Monday, August 15, 2011

Disney with an Aspie, part II

Yesterday, as I reflected on our recent trip to Disney with our Aspie and typically-developing kids, I was remembering two family trips that did NOT go as well. Traveling with a kid on the spectrum is hard. 

Vacation is different. You get to sleep in (theoretically), you get to stay up late, you get to visit new places, you get to try new foods, you get to have extra dessert, you get to buy new things. Vacation is all different.

For a typically-developing child, all that "different" adds up to some amazingly fun and exciting (albeit over-sugared and over-tired) fun. To be clear, traveling with typical kids is hard, too, in that it's not really much of a vacation for parents, throws off sleep schedules, and makes lots of work for mommy before and afterwards. But, typical kids see all that "different" as FUN!

But, traveling with a kid on the spectrum has that "different" PLUS the disrupted routines, unknown places and food, different smells and decor, different sounds...all of it...everything's different. And for an Aspie, different means terrifying.

We tried two vacations with 4A. The first was to Rehobeth Beach, DE when 4A was 3 (not yet on medicine) and 4B was 18 months. Please trust me when I say that it was a disaster of epic proportions. So bad that we didn't go on vacation again for two years. Two years.

On that beach trip, 4A was in her obsessed-with-Cruella DeVil stage. For an Aspie, the traditional toddler or preschooler obsession with a character or a movie or a toy takes on a whole other dimension of insanity. She was obsessed with the Glenn Close version of CdV, especially the "crazy hair." Oh my! In an attempt to do something fun for her, I mistakenly did up her hair on our first day of vacation. 

Every single solitary time thereafter that we washed her hair or headed out, she wanted that crazy hair. No problem...happy to do it....it's vacation after all. EGADS! For a typical kid, you'd do it up again, close as you could to how it looked the first time, and you'd make do. 

Not with my Aspie. Of course, I knew well enough to use the same hair ties, the same general configuration, etc. Not good enough. Absolute hysterial, blood-curdling tantrum if it didn't look EXACTLY as it did the first time. I had this "rule" for myself that I would attempt it, only if she asked nicely. If she asked nicely for the crazy hair, I wanted to reinforce the "niceness" of the request. Positive reinforcement of behavior that I wanted to encourage, right?

Now, you're probably wondering what the big deal is, especially if you know me. I do NOT negotiate with terrorists, I mean whiners. Tantrum about not getting your way with me, and you're done. That's it. I don't give in.

This crazy hair business was particularly sticky. It was vacation. We were trying to have fun. With a typical kid, a tantrum lasts 30 minutes or so, and everything goes back the way it was. Not so with my Aspie. 

Let's say she asked nicely. I would attempt to do the crazy hair. If she flipped out about how I'd done it, the behavioral plan at the time necessitated that we extinguish all attention until she could be quiet for three minutes. First, in the particular condo that we were in, the bedroom doors didn't lock. At home, we put her in a room where the door locked on the outside because Dr. Steve had said that even our hand on the door constituted attention. Basically, she knew we were there if we were holding the door closed, and that meant attention. So, the only place I could lock her in that condo wasn't going to work because tantrums never stopped unless ALL attention was extinguished.

At this point, if I ignored a request for crazy hair, whether a polite request or not, or if I didn't do it "right," we effectively had no way to stop the tantrum. Plus, since it was vacation, we didn't want to stay in the damn condo ALL day. If we had said we were going out for ice cream, something we and 4B were excited about (it was vacation, after all), we had to go, tantrum or not, because we had said we were going, and tantruming was never allowed to be a reason to escape a non-preferred activity.

Consequently, that ENTIRE trip was a tantruming mess, mostly about that ridiculous crazy hair. You can see, I think, why it took us two years to get brave enough to try again.

The second family vacation that we tried was when 4A was 3.5 y/o and 4B was 2 y/o. We took them to Hershey Park, PA. Behaviorally, it did go a bit better, mostly, I think, because we went for only one day. Plus, she was excited enough about the merry-go-round and the ferris wheel that she was distracted. 

Well, Dr. Steve was helping us potty train her at the time. She absolutely, utterly refused to use the potty. She tantrumed so badly about it, that the first step of the potty behavioral plan was to physically restrain her on the toilet until she could be quiet for ten seconds. You know how freakin' long it took to get her to stay quiet for ten seconds?!? Probably fifteen minutes or so the first time. One time, she tantrumed so badly while I restrained her on a potty chair that she broke the damn thing and cut her thigh. UGH! That set us back even further. But, I digress. That whole potty training saga is a story for another day. 

At the time of this Hershey Park trip, she would use the toilet for pee but refused to poop on it. We were using an adult dose of prescription laxative, and we had taken away diapers. Dr. Steve figured the laxative would make it impossible for her not to go so that she'd opt for the toilet over pooping in her underwear.

Wrong. 4A held her stool for EIGHT DAYS, my friend. EIGHT F***ing days.

Unfortunately, the shit damn broke loose in the middle of Hershey Park. Watery stool just came running down her legs...everywhere. She couldn't control it at that point. She's hysterical, of course, and I'm trying to clean it up enough that we can get her to the bathroom and change. 4Daddy is wrangling 4B and trying to hunt out the nearest bathroom. I finally got her cleaned up enough that I could strip her, toss the soiled clothes and get her to the bathroom. Some ASSHOLE Hershey employee came over and hollered at us to change all diapers in the bathroom. Are you kidding me?!? Yeah, I'll get right on that, buddy.

I figure these two past experiences with 4A made the success at Disney all the more sweet. Oh, we've had beach vacations since then, and they've been worlds better. But this Disney trip was the first one where she really enjoyed herself, didn't have any meltdowns, and seemed more like a "regular" kid.

Guess what they say is true...that place IS the most damn magical place on the planet!

Sunday, August 14, 2011

Doing Disney with an Aspie

We are in our way home from a wonderfully magical (albeit exhausting) trip to Disney. My first time there with kids. Knew it would be intense but had reservations about how 4A would do with the crowds, the noise, the walking, and the disruption to our normal routine. Her Asperger's Syndrome makes things that are wonderfully fun for most kids (like Christmas, for example) a nightmare because they necessitate change, excitement, and unknowns.

4A's pediatric neuropsychiatrist (Dr. G) gave us a letter to present at Disney's guest relations to get what was described as a "special needs" pass. Dr. G specifically asked that they help us reduce her wait times. So, I envisioned, as did Dr. G, a "fast pass" of sorts.

Before we left, I talked with 4A about how hot and and crowded it was going to be, and we looked at pictures and videos online (thank GOD for YouTube!) of what the lines would look like and average wait times for rides. I told her that Dr. G wrote a special letter for us to get 4A help if she needed it, but we talked (for the gazillioneth time) about patience and keeping complaints to ourselves so that others can enjoy themselves. Aspies, because social connections are hard for them, tend to be extremely self-focused. Add to that the Aspie lack-of-filter-on-all-thoughts, and you've got yourself a SUPER miserable time. Constant whining and complaining. In the most magical place on earth?!? I was SO hoping not.

So, after three days of driving and a two-day visit with family, we headed to the park for our first day, in MONSOON rains. I checked in at guest relations with Dr. G's letter. To my amazement, no letter was needed. I described 4A's tendencies to frustration and anxiety in unknown situations and hypotonia (poor muscle tone, which often accompanies autism spectrum disorders, and which gives her a very objective reason to be uncomfortable with lots of walking and standing). We were given a pass to allow our stroller to serve as a wheelchair, which effectively meant that we were able to keep it with us up to the very last moment until boarding a ride in case 4A needed to rest. I explained to 4A that she could use the stroller if she needed a break from waiting in line and that Dr. G and the Disney folks said it was okay for her to use it whenever she needed it.

In a moment of social recognition that always overjoys me, she was HORRIFIED at the thought of sitting in a stroller "like a baby." I told her that was her choice but that if I heard even one word of complaining, she was going in.

Do you know that kid didn't complain even ONE time over THREE days in those parks? Through flooding rains, sweltering heat, body-to-body crowds, constant walking and waiting....conditions so intense at even the grown-ups in our group were making complaints. Absolutely AMAZING!

Even more amazing, when we complimented her on our last night at how well she had done without complaining, she said, "Well, I complained inside my head a million times!" Bingo, kiddo!!! Bingo! So proud. SO proud!

Because she enjoyed herself and was able to flex (something that every vacation requires), we were ALL able to enjoy ourselves.

Of course I had heard how wonderfully accommodating Disney is of special needs, but I was honestly blown away. Each time a chef visited our table because of 4C's allergies, we were able to get whatever we needed for 4A (read copious amounts of plain pasta) at the mere mention of her autism. No drama, no problem...pure enjoyment for parents. When 4C necessitated a specially-made, allergy-free dessert, we were given four just to make things easier. Exquisite!

So, would we go back? In an absolute heart-beat. Now, does this mean that I'd drive the whole way again, stay outside of the park, spend $55 on forgotten rain ponchos, and go in August's heat and crowds? No way!! But, we'll be going back...and soon. Enjoying a vacation with our Aspie made every mile and every penny so totally worth it.

Tuesday, August 2, 2011

Quiet maker: kids pack themselves for vacay

Here's the scenario. We're leaving for vacay tomorrow. Kids? Bouncing off the walls with excitement. 4Daddy? Working long/late nights to "get it all done" before we leave. Consequently, me? Overtired, stressed-out HAG!!!

It's ALWAYS like this as we get ready for vacation, no matter what the trip. Kids are crazy with excitement, 4Daddy's MIA, and I'm left holding the bag with crazed kids, fussy baby, and all the shit to pack. I so hope that Hindus are right. When I'm reincarnated, I'm coming back as a MAN! Shorter lines for the bathroom in public places, a wife, and showing up on the morning of vacay and just going on vacation. Now, that's the life.

Here's one of my tried-and-true ways for keeping my bigger 3 out of my hair during those last few days before vacation.

Quiet maker: Kids pack themselves for a trip
Mom time needed: 10 minutes
Kid time needed: 30 minutes+
Supplies: paper, clipboards, yarn or string or rubberband, writing implements, freebie clip art, computer and printer (unless you're dying to write this out by hand...you know, in your spare time)

Prep: The night (or week) before you want the kids to pack, print out a checklist for each of them. Embellish with freebie clip art to make it fun. For those that can read, be sure to leave them a little line or box to check off each item. I like mine to know that I want the shit folded and left ON MY BED, not thrown in a heap on the floor like the first time we tried this, so I spell that out right there in black and white at the top of the damn list. Print your cherub's list, slap it on a clipboard, and attach a pen with a piece of yarn. Oh, you can use pencil IF you want to hear 10,000 times that the pencil's broken. Go for it! I dare you.

For those that can't read, use freebie clip art to give pictures of what you need them to gather. If your cherub can count, then list the number of the item that she should gather; use BIG font! I do boxes around these with a sharpie after printing, and I attach a marker to her clipboard so that she can X out or color in the boxes after she's completed it.

So, print, clip, string a writing implement, and you're ready to roll!

Kids pack themselves for vacation in action: I've tried making this a race before, and I got big piles of clothes thrown in heaps at the foot of my bed. No thank you! So, instead, I now let them know that when their list is COMPLETED, read folded or laid nicely on my bed, then we do a "movie cave" (this is a future quiet maker post---stayed tuned!) or other fun activity. Whoever is able to get his or hers ready with no whining, folded or nicely laid on my bed, without a reminder from me to get it done earns 10 extra minutes of reading or DSi/Leapster time after lights out. Because that, my friend, is how I roll.

As you can see, 4B didn't heed that instruction (his stuff is on the left in the first picture) and got the opportunity to try again (second photo below--he looks so pleased, doesn't he?!). 4C was SO proud to be packing herself up for the trip. 4A, Aspie that she is, followed my instructions to the letter (her stuff is on the right in the first picture).

While my kids are doing their packing, I enjoy a pot of tea. Heck, it might be the only peaceful twenty minutes I get in my day. I can pack MY stuff in peace and quiet after they're in bed.

Happy packing!

Monday, August 1, 2011

Quiet maker: kid-friendly batik

I have another beloved mommy friend who has an INSANELY crafty/talented teen at her house. Her teen showed me a batik banner that she made with glue and watercolor. I had forgotten her explanation when I was ready to use the idea for Camp COOL, so I googled "kid batik glue" in varying combinations. EGADS! A SLEW of varying directions out there, none of which worked or were kid-friendly.

Here, my friend, is a 100% tried and true way for KIDS to do batik with glue and watercolor. And, of course, this activity is worth its weight in quiet, so it's a Quiet Maker!

Quiet maker: homemade, kid-friendly batik
Mom time to prep: 30 minutes, divided
Kid time to complete: at least 30 minutes
Supplies: muslin (cheapest kind they have at your craft store), dowel rods, sharp knife, sandpaper, glue (both school and fabric or tacky), watercolor paints, water bowls, brushes, yarn, scissors

Prep: The night before, cut the muslin to size for name banners (ours were about 10"x14", and I didn't use pinking shears). With cheapy white school glue, write the child's name and a few fun shapes on her banner. Many sites will tell you that white school-type glue won't work and that you need to use gel-type school glue. I used regular old white Elmer's, and it worked beautifully.

If necessary, use a sharp serrated knife to cut dowels to size (and I sanded the edges for a quick sec to avoid whining, I mean splinters). Precut the yarn so that it's long enough to tie on both ends and hang the banner.

In a 9x13 pan, basket, or bin, gather up water bowls, paint brushes, and old watercolors (this is a PERFECT way to use up old remnants of muddied, cracked watercolors). Throw in your precut yarn and some tacky or fabric glue. Cover your workspace with a tablecloth (a cheapy plastic dollar store one if you want absolute ease or a wipeable or washable one if you give two shits about the environment), and leave the banners out to air dry until morning. Ready to roll!

Money saving idea: use old rulers instead of dowel rods for hanging, use old pillow cases or the back section of Dad's old work shirts (just make sure it's non-tshirt, cotton fabric).

Batik in action: 30 minutes or more

With brushes goopy with watercolor, have the kids paint their banner in chunks or sections. These chunks/sections should be all hodge-podge, non-meticulous, random, and overlapping. Absolutely no rules allowed!

Frustration saving tip: Fat brushes will get the job done quicker because they cover more surface area. 4B wanted quick while 4A and especially 4C were quite content with typical brushes.

To finish the batik banners: After the kids are in bed and the banners are dry, pour a hefty glass of wine. Sip. Relax. Now, peel the glue off of the banners. I read that it was necessary to rinse the fabric. DON'T!!! YIKES! I did that on 4A's, and all I was left with was a piece of pink-ish muslin. DON'T RINSE!!!! Fold top couple inches of banner over and glue (fabric or tacky) it to itself to make a sleeve through which to place the dowel rod. Slip in rod. Tie yarn to both ends. A dab of glue outside of each yarn knot will prevent slippage and, consequently, whining. Hang them on their morning "spots," so they can squeal with delight when they discover them.

Such fun!

Coming soon...more Camp COOL! Quiet makers, including build and eat antipasto bar, village build and video shoot, and painted glass lanterns with beads. Oooh laah laah!

Getting dressed checklist for an Aspie

Yesterday's "shopping" spree got me to remembering the whole clothes/getting dressed debacle with 4A back in her hay day of autism.

When she was in first grade, we decided it was finally time to fight with her about getting dressed by herself in the morning. I was pregnant with 4D, had 4B in preschool 4 days a week, and just no longer felt like helping, frankly.

Tried a lot of methods with the help of Dr. Steve, but here's what finally worked. Good old fashioned "beat the timer" with a dry-erase checklist (how she LOVES checking stuff off) and an immediate reinforcer (candy) plus her regular reinforcer (sticker chart). Worked like magic from the second try. (FYI: we weaned out the immediate reinforcer after 3 days.)

I made this with a freebie trial that I had of Boardmaker at the time. I laminated it and clipped it to a clipboard with a dry erase marker attached by string. She navigated the entire list by herself and set the timer by herself as well.

Happy dressing!