Autism Watch: 2007

Archive for December 2008

Dear God…

Thank you for everything. I hope we have a good day tomorrow. Keep everyone safe. Keep me from having nightmares.

And God, I love my life. You picked the perfect mom for me. Thank you.

Amen.

I don’t even need to add to this — his heartfelt prayer says it all.

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All year long, Christmas is on a kid’s mind. They talk about how many days there are left, what they want, and seeing Santa. We teach them the reason for the holiday (which, in my very outspoken opinion, is a Christian holiday and should be celebrated as such) and we hope they remember it when the time comes. Kids have such big plans for the holiday, but then, so do I. I build up the day so much, way in advance. I plan how we’ll perfectly decorate our house. I plan the food I’ll bake, and who will sit around and enjoy it with us, candles burning and making the house smell like Christmas, Christmas lights blinking and glowing. Carols playing. Ribboned boxes and bags under the tree — early — and visits planned throughout the holiday week. Then, I throw in the reality. Therapy appointments and cooldown periods for ds. Special shopping trips to be sure ds’s ‘want’ list is adequately covered. Wine for those nights we stay home and have to count to ten because ds is being obstinate.

What would I do different next year? I won’t have a party, at least not to the extent of what we did this year. Too much time invested. Instead, a smaller gathering for our friends rather than trying to open up our house to so many and meet new people. Time taken from my family. But, still, everything paid off. We had baked goods aplenty to give as gifts to neighbors and friends who were unable to attend, and I didn’t have to bake anything else. And the house was already decorated.

It was, and is, a wonderful holiday season. We baked and decorated gingerbread men, after assembling a pre-made Wilton gingerbread house. (Note: warn children frequently not to eat house decorations. Dentists aren’t open on Christmas Eve.) We played games. We watched Christmas movies. (Another note: buy your Christmas DVDs early in the season. Dh braving Wal-Mart crowds on Christmas Eve morning is a story in itself. Or set your Tivo two months in advance. Apparently, many movies show around Thanksgiving, who knew?)

Then there was the weather. Cold and rainy. And cold. (Imagine states other than California thinking 90 degrees is hot — that’s how it is when California temps drop below 40.) We had flurries two days before Christmas, and our mountains were covered in white, and still are. We visited the infamous Thoroughbred Lane in Alta Loma (viewable on this blog: The Smith’s Canvas in the USA Thanks to the Smith’s blog for doing such a great photog job! Hope you don’t mind I shared your link here!) and saw firsthand one big change in ds. Halfway through the walk, ds yells that he’s dropped his magic wand — one of those plastic batons full of liquid and glitter that he’d gotten as a prize from John’s Incredible Pizza at his birthday party earlier this month — and after walking back a few miles..okay, a thousand feet??…we couldn’t find it. He didn’t even cry! He did get quiet, then a few minutes later announced that he felt good knowing that some other kid out there who picked it up most definitely was having a lot of fun with it. Awwwww. Almost back to where we’d parked our car, we find a family selling…you guessed it…magic wands! $2 and a minute later, ds was playing with a light-up wand. Wow.

A post-script? We got home, pulled the stroller out of the trunk to stow back in the garage, and the original wand fell out of a hidden crevice. Two wands!

Christmas day was as perfect as could be. Ds was happy with his gifts, as were the girls. Older ds spent the whole day with us, and we all enjoyed playing with the new Wii games, our non-fancy-but-perfect ham dinner, and we all lived to tell about the Battle of the Nerf Guns. Ds got four of them for Christmas, and I am still finding bullets in odd places. Dd is still glued to her laptop. I think I’ve seen her for three meals in the last four days. Oh, and at church on Sunday.

Two days after Christmas, we got the bright (ha) idea to go play in the snow. Great idea actually, except everyone else within three hours driving distance decided to do the same thing. The bathroom line was 45 minutes at the last potty-stop before the snow, and that was just the beginning. Traffic was moving at a snail’s pace, so we finally found a place to pull off and play. Perfect location, snow up to our knees, where we made pathetic snowmen (cute but pathetic) and threw chunks at each others’ heads. We made the drive all the way home to Coffee Bean & Tea Leaf with nary a stop (laughing at those in line at the AM/PM) and had a calm evening. Snowplay is great, free occupational therapy.

Today, as we’re packing the RV for a New Year’s camping trip — four days of dry camping, with a generator and bottled water — we find that older ds’s iguana had passed. ūüė¶¬† I don’t care how old your kids are, when a pet dies, your heart still cracks as they deal with the loss. In telling ds, he just stopped for a second…didn’t move, didn’t speak, just stared at me. He then said “awww, poor Bubu.” (That’s how he spells Bubba, his longtime nick for his brother.) “It makes me want to cry.” But, a minute later, he’d moved on. And here I was trying so hard to prevent him from seeing the iguana before/after. Do I underestimate him sometimes?

While out camping, I presume we’re going to run into a few roadblocks. Ds can’t ride an ATV on his own, nor will he want rides on anyone else’s for long. He can’t yet ride his new bike without training wheels, unusable in this terrain, and he can’t take the Wii or his computer. We’re using generator/battery power. I’ve packed a slew of games and outdoor activities, and a billion snacks. Oh, and his entire set of Gameboys, DSs, PSPs, etc. will be charged and ready to go. It’ll be pitch black at night, so I am thankful our RV has a full bath. He can watch movies while the adults are hanging around the firepit and the older kids are otherwise occupied. (He’ll be the youngest, with the oldest, other than my older two who aren’t staying beyond Thurs., being 14 years old.) We’ve got a plethora of flashlights, too, and a first aid kit and pharmacy shelf to rival a drugstore. (And the fact that we’re within 20-30 mins of a store, at most, helps…oh, and a hospital, too.)

Anyway, it’s been a good holiday season. (And this all relates to autism, my blog focus, I promise.) The plans I made came through, and there were no major letdowns. Enough planning with room for deviation from our schedule kept us mostly stress-free, so ds didn’t pick up on anything that would hinder him from relaxing. He’s far too wise for his age, and we have to be careful. He has spent hours on Club Penguin, thriving on the one-on-one attention he gets from two parents on vacation. We’ve taken a break from so many of our daily autism-related issues — no school problems, no homework, no therapy appointments, no stressed errands, no rushing around — yet autism is still here. We may be able to alter the environment enough to keep major issues at bay, but it’s temporary. Even at our best, we can’t prevent things from happening. We can’t let him run the house or dictate everyone’s plans or actions. He’s still got this unusual habit of cutting off his nose to spite his face; for example, I tell him to come back to the Sorry game and sit down so others could take their turns, and he refused to play anymore. Tonight, he climbed out of the jacuzzi early because I told him to not lean back so far or he’d knock my water bottle off the edge. I can buy him all the Under Armour in the world, to keep him warm while camping, but I can’t be sure he won’t get hurt feelings when another kid doesn’t want to play with him. We saw it happen while we were out on Sunday — he tries so hard to fit in with the other kids, and most of them just ignore his following right behind them. A few address him, a couple doing so well with including him. Most though? You hear “Stop.” I can’t blame the kids — I see the parents quite often doing the same thing, or they aren’t taught to be nice to other kids, just those who they want as friends. I can’t fix every issue he has to face, but I do hope to teach him to befriend the underdog and to play with the lonely kids. Don’t pick on someone whose different, and if someone’s having a bad moment, assume they’re having a bad day rather than assuming they’re a bad kid. Then there’s the phenomena of parents who try to discipline or correct ds, rather than looking at their own child or, worst case scenario, approaching us about what ‘might’ have happened. Christmas spirit doesn’t prevent the normal things from occurring, but it does make it harder to take. If we can’t be nicer at this time of year, when can we?

I’m off to listen to ds tell me about his latest Club Penguin mission. Online, he has a list of friends, so many he doesn’t have enough room on his list. That’s definitely worth $5.95 a month.

Merry Christmas to everyone, and have a wonderful New Year!

Do you? Or don’t you?

And in case I’m not clear, I mean forcing your child to engage in certain social events or activities.

My son was in our church’s Christmas program last night. To say he participated under duress is an understatement. We forced him. He didn’t want to stand and sing, or even pretend to, and he didn’t want to say any lines. Problem was, I did.

I know, you’re thinking “why.” Ten minutes after we arrived last night, I was wondering why, too.

My thoughts were/are that we have to not give up on him in any way, and that we always need to try and provide the same activities neurotypical kids have. If we never make him do things he’s uncomfortable with, will he ever be able to do those things? Of course, there are limitations to where you’d test this theory, but we felt safe with this one. At this point, if I had to decide on next year’s play already, I’d probably say no.

Ds doesn’t take direction well. He wants things his way. He wants routine, sameness, and control. Being in a group activity means he’s going to have to take direction, and he did. Well, he had adults giving needed direction, but I’m not sure he really ‘took’ it. He flashed daggers, shoved away from the group, shoved through the group, argued with a couple kids, and may have told one¬†adult he wanted to kill him. (Thank God, that guy had both a sense of humor and a lot of compassion…and he knew about ds.) He didn’t even make it through the final dress rehearsal/practice. Two minutes before showtime, dh and I were summoned. Ds had another issue with another kid, and it led to a total meltdown. It took dh 20 minutes or so in a quiet room before he was ready to go on-stage, and none too soon — his lines were due in about two minutes. I got him on stage, minus his cap, and he happily said his lines. Total transformation.

Not so fast.

As soon as his lines were done, he started shadowing the child standing in front of him. Every time the boy would move, so would ds. Soon, another adult close by quietly reminded him to stop, which was fine — ds needed to hear that he can’t ruin someone else’s performance and that he’s part of a group — but ds shut down. He moped, dragged, and moved away. It was heartbreaking. I was already nauseaous, it’s painful to watch, and this just made it worse. Then, miraculously, the play was over. Good to go, right?

Ha.

The kids all went to a back room to take off their costumes. Candy was handed out, but when ds didn’t get a ‘big’ candy like the ‘big’ kids (“But I AM big!”) he threw what he was given. That resulted in hysterical crying, and dh carrying him out. We understood his upset and wanted him away from everyone before it got worse, for others and for him. We know he doesn’t want to be seen this way, he hates the stares and whispers, and I hate it as well. So many people came up to us to tell us how good he did, how he at least said his lines, etc. True, true…but nonetheless, it took me a bit to decide if I could eat dinner or not.

I looked through the photos later, and saw his sullen, angry glances. Sure, he may have learned something from this, but how many lessons does it take? How many times do we have to try this? And how often before people start thinking ‘enough, already!’ At what point do the lessons my son learns and the importance/fairness of him participating becomes unfair to others? Or do we continue to ignore that aspect as long as he’s not hurting anyone else? Luckily, the only visible issues last night were not during the show, except for those last few minutes.

I’m really relieved it’s over with. I love children’s performances. I love helping — the laughing, the funny mistakes, the whole organization of it all. But, the stress of trying to get him to go along with the plans? Not priceless.

At least today is the first day of the official Christmas vacation for him, two and a half weeks of him around here, and I’m THRILLED. And no, that’s not sarcasm. He thrives on one-on-one attention, and I had kids so I could be around them. What better time of year than Christmas. Speaking of which, time to go. I need to dig out my gingerbread cookie dough recipe and get that mixed and refrigerated. Tomorrow’s cooking decorating day.

This week, I tried to enroll my son in an event where I thought he’d be okay. He knew about it prior, and wasn’t totally opposed. He’d stated a couple of demands, which were do-able, and agreed to go. I knew it’d be a stretch, but he’s done it before and while we never quite know what will happen on The Big Day (in front of an audience), no disasters. I knew we’d have to pick our battles while there, and not sweat the small stuff. I was officially involved, and planned on being accessible to him the entire evening. All the plans were set, and things should go smoothly, right?

Not so much.

As soon as we arrived and ds saw a lot of other kids running around, both young and old, his ADHD side came out. Big. Time. An instructor stepped in, wonderfully so, and got him back on task, though it wasn’t without some dancing on his part. Dancing is a battle I won’t fight; he wasn’t disruptive to the other kids, he wasn’t touching anyone else, and he was still doing what he should have been. But that’s when it went downhill.

Maybe, because I was in a place where I knew¬†most people knew about him, a place where you wouldn’t expect judgmental stares, I got comfortable. Maybe I assumed people would be understanding, based on the environment and our longterm involvement with this group. Maybe I just figured that kids were kids, and parents would be just having fun watching their children in this event, and not really worry about someone else’s kid. I don’t know, but in any case, I was wrong.

It didn’t take long at all before I saw a few gestures. A few stares. The stares lengthened when my older dd tried to step in and help. Personally, I think she saw the stares and glares before I did, and her defensiveness came out, so she joined in to play with him and downplay (pardon the pun) his behavior, and I love her for that. But, I don’t think it helped. The stares continued. Sadly, I even saw a couple looks of total disdain, complete with scrunched eyes and curled lips, as though someone had brought an unruly poisonous naked snake to a mouse party.

And that was just the beginning.

We continued on with more preparation, and ds refused to cooperate. In fact, he hid under desks, chairs, and any other piece of furniture an adult couldn’t fit under. I resorted to calling dh and handing my very expensive new Smartphone to ds so dh could talk him out. He did do that — ds eventually came out — but by then, we’d missed most of the practice, and more and more people were walking by staring. I told ds he didn’t have to participate. He relaxed and started running around and smiling (noisily) again. And that was that.

Me though? I had to remind myself a few times that I was not going to lose it in front of people, particularly people who looked at my son like he was a wild out-of-control brat. I felt embarrassed, and then immediately ashamed of that embarrassment — why should I care what a bunch of people who are ignorant of¬†my son’s issues think? I felt angry. How dare people look at him that way. They have no idea exactly how far he’s come, what an amazement he is, what a miracle. And how dare people be hypocritical, to look at my son, in this particular building, without the love and compassion and tolerance we’re taught to have?

For a few minutes, I felt the same helplessness and lack of control I felt in ds’s earlier years. The ‘what do I do now?’ panicky¬†feeling, where you want to grab your child and run home because you have no clue what to do and you just want the event over with. Four years (to the week) after his diagnosis, and those moments apparently still come.

Thankfully, we have friends there. Their support curbed some of my anger and frustration. They expressed love for my child, and told me to ignore those who didn’t know him. They spoke the truth, but it can be hard to do. My husband reiterated it when I returned home, reminding me that WE know ds, and if ds is happy and behaving as we know he can or should be, that’s all that matters. I need to let go of making ds do something just because ‘normal’ kids do it. If he’s happy, I need to not worry about him missing out on something. Sounds so easy, and makes so much sense, but there are days it doesn’t just fall into place.

Later that evening, ds sat at his new desk in his new room, in his new red flannel soft polar-bear-covered pajamas, doing his math homework. His hair was brushed and curled over his collar. He declared his tiredness, and climbed into bed, after I fixed the proper blankets into their proper places. After a sweet goodnight prayer, where he prayed that I would have a good day and thanked God for all he does for him, he was asleep in minutes.

What a doll. I am so blessed. He’s an adorable, loving, smart doll who just happens to be hyper and have social and communication issues and meltdowns that’ll put hair on your chest. And he’s my doll. He’s my gift given to me to raise, and dh and I are the only ones who know how to do that. So for those who want to stare, go for it. Your actions aren’t just obvious to me, but to others. They speak volumes. I may not know your name, but if you think about it, you know even less of my son that enables you to be so disgusted or turned off by his behavior. (And for the woman who put up her hand to keep him away from you — I don’t even know what to say.) Everyone out there with children, it’s just the matter of a funky gene or a vaccine or some other environmental toxin that separates us from you. It’s not¬†our parenting, and it’s not my child’s intentional behavior. It’s as much of my son’s personality as rudeness or lack of tact or judgmental behavior is to a ‘normal’ person.

And in the end? I’ll take my son’s behavior over that. I’ll also continue to be so proud of who he is and what he’s become. I’ll refrain from waving my hands to quiet the room to educate, when it’s really no one’s business, and instead, I’ll save my time and energy to continue to help my son. I refuse to let the issues of others make negative changes in my life. I can’t say that I am not disappointed. There are places you don’t expect that type of behavior, and this was one of them. I can’t say that I don’t feel like autism awareness has a LONG way to go — people out there still think it’s an excuse, or it can be medicated or disciplined away. I try to blow off what I see as selfishness, a refusal to realize that one’s own children aren’t the only ‘perfect’ kids out there, or to acknowledge that one’s own style of parenting isn’t the only way. And I can’t pretend not to be a little sad that people are missing out on the gift that is our children. I won’t let their negative energy make me miss out on it either. Every day with our kids, perfect, ‘normal,’ ‘neurotypical’ or not, is a gift. All kids are miracles. We’re all in this world together, and loving thy neighbor works a lot better when we move past the stares and instead work on acceptance — if we can’t accept small¬†children, how can we really accept any adults.

On Monday night, we took bb to see Santa. Bass Pro Shops has THE best Santa yet. He was wonderful — funny, loving, gentle, all that a Santa should be. Bb saw him, ran right to him (YAY! a total 180 from last year, where our family photo shows him with as huge of a mad unhappy face as is capturable on camera) and started to recite his list. With a few discreet nods from me, behind bb, Santa was able to nod appropriately to his requests. It went great! Dd also visited, and came away with a big smile on her face. (We followed it up with dinner at Isla Morado Fish Company, their restaurant. Shout out for good food!)

So, score one for this holiday season. PHEW.

Yesterday, while at training, I took my phone out on lunch break to see that there was a voicemail from my son’s school. Oh. No. Here I am, no closer than a 1.5 hour’s drive if traffic cooperates. I returned her call, and as always, she was wonderful. Ds had a bad moment on the playground, thought he was in trouble and had lost all his friends, so the teacher and principal together determined it was a good time to have him call me and see if that calmed him. Apparently, he visibly relaxed when she said he could call me, so she brought him back to the office and we talked. He was upset, but not where he had to go home, and our call made it even better. He happily went back to class, and while I was desperate to hug him, I was thrilled it was a successful resolution… but I did call dh to advise him to keep an ear out as I’d suggested they call dad if anything else happened during the remainder of the day. And that call never came, ds’s day ended up being fine, and he went into class today without any further upset. Score another one for the third to last day of the school year!

How many of us hear that? (Though maybe I guess the bigger question is: how many of us get that?)

I hear it all the time. While I agree all moms do, especially moms who are blessed with special kids, it’s not all its cracked up to be. Let me tell you.

Yesterday, I was able to attend a training program for my employment. Not counting the long drive due to traffic (we’re talking a 430am alarm) I’m really glad I did it. (And even with traffic, I’m still glad I did it.) Us telecommuters, any drives are a change, but if you throw in 1.5-3 hours one-way, we might go cross-eyed for a second. Anyway, the training program was excellent and I really do think I learned a lot of applicable tips. After training was completed, it was recommended to me by several co-workers who live close by that I hang around in the area for a couple of hours, or I’d just be sitting on the freeway for a couple of hours extra. I chose to hang out. I envisioned myself walking around this beautifully decorated outdoor area, strolling along, having a leisurely dinner…ahhh, sounds nice, eh?

Fast forward to leaving the training. I headed for the Citywalk, with its gorgeous Christmas trees, huge neon sculptures, and loud but perfectly fitting Christmas music. Ahhhh. I wandered through some stores, picked up some souvenirs for the kids, and headed back up the other side to some stores I’d not been in yet. I also was scoping out restaurants for my nice uninterrupted dinner. Then it hit me. Everyone in all those restaurants was either a couple or a family, boisterously enjoying their time together. Couples clanking wine glasses together, kids with sparkles in their eyes (so they were reflections from the Christmas lights everywhere, who cares) and tourists excited about their day. Me, I’m alone. No real shopping bags to speak of, no interest in wine when I’ve got a long drive ahead of me, and <sniff> my little ones at home wishing I was there. Suddenly, having a leisurely dinner really wasn’t as exciting.

So, what do I do? I turn to the next best thing: texting. I’d already called dh earlier, and he told me that bb had an awesome day, with news he wanted to tell me on his own. When he started talking to me, he sounded SO much older than his newly-eight-years age. Sniff. He wanted to tell me that they had their school party today, the prize for those who sold a lot in the fundraiser. He won the grand prize! He also grabbed another $20 in the ‘money blowing around in a phone-booth-type box’ game. It made his day.

I text my oldest dd. That didn’t last long, she had things to do. I text some friends. However, none of it makes up for the fact I’m sitting alone in a Tony Roma’s enjoying a really good salad..alone. Sounds nice, I know, and so did my friends who weren’t as appreciative of my plight. Hmmph. Thirty-five minutes later, because, really, how long can you drag out a salad, and I was on my way to the car. Smooth sailing for all of three minutes, then traffic. Wasn’t this the whole reason for my foray around Citywalk?

In the end, I did get to check out the whole Citywalk and found some amazing things, if it weren’t Christmas and I hadn’t already completed all my shopping and then some. I found some other restaurants I could eat in next time, but I’ll need to bring a book at least. As good as it all was, the best part of my day was the hug when I saw ds that evening….at 8:55pm. Long day, I’m tired, but that hug was the bestest.

If you get time by yourself, take it. Just plan better than me. You need the time, but wasting it feeling lonely or wishing you had more to do detracts from the experience. It’s all in the details.

hood

Sorry I can’t make that bigger — I’m on a different machine without my normal photo/graphics programs, but at least you get the drift.¬† This is what¬†barnacle boy¬†looked like when upset at his school awards ceremony last week…and this was before it had escalated to the point where he wouldn’t get out of his seat. That’s when I took this picture:

headdown

I think we all have days like this.


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