Autism Watch: 2007

Archive for April 2010

…days ago, and I didn’t do it. I didn’t lie, I promise. I just forgot.

Long story short, it’s going well. The foundation of everything, according to the school (and without any prompting from us at all), is social skills. Let me hear an AMEN.

He’s got a one-on-one still, a social skills aide, and several other social skills programs going on. His teacher is awesome, and she fills me in on how he does eating lunch even. We are thrilled.

As for BB, he likes his class, enjoys his teacher and finds the homework within reasonable amounts. He has a “girlfriend” with sparkly eyes, and he makes it through each day without a problem. He is happy.

So we’re happy.

There are times my son looks “normal.” He’s not screaming or yelling and if you watched through a window, you’d see him focus on his laptop for hours at a time or play his DSi. You’d see him do his homework and eat some dinner, and give me a hug when he goes to bed. So what’s wrong with that? Nothing..except without hearing him, looks are entirely deceiving.

This past weekend, we were house hunting. We spent about 1.5 hours at one particular house, deciding if it was “the one.” In fact, it was “the one,” but we didn’t make an offer until the next day, and we heard this afternoon that it was accepted. (Can I hear a big YAHOOOOOO?) BB wanted to go with us to the open house. We’d promised him a quick (ha) tour of a home we were considering buying, and we wanted him to have an idea of what to expect in case we did purchase it. From a distance, it probably seemed fine, but if you couldn’t interpret the look on his face, the slope of his shoulders, or the shuffling of his feet, you wouldn’t know what was really going on. It probably looked like an everyday family but plug in the sonic ear and you’d have heard a completely different side.

See, this house we looked at is in “the” neighborhood. It’s a custom home on a two-acre lot, surrounded by homes closer to, or more than a million dollars in value. It’s got a pool, a jacuzzi and a sauna, along with workshop, craft building and this white picket fence that screams home. To us, it’s ideal…”us” being my husband, my older son, and my younger daughter. BB? Not so much.

He started off in the screened-in pool area. He wouldn’t leave it, no matter where we went. He had run in there the second we got in the home, and wouldn’t look anywhere else, no matter how hard we tried. We thought “perfect, he’s loving the pool, just as we’d hoped.” Ha. If only things were that easy.

“BB, what do you think of this bedroom? It would be yours!”

“NO! This is an OLD LADY HOUSE!”

“Old lady? Huh?”

“Mom, it’s wayyyy smaller than the neighbor homes, surrounded by mansions and we’re going to be the poor people!!”

Okay, here’s where I admit to having to turn away before he could see my amused face…or my ‘he did NOT just say that! omg, that’s hilarious, what a butthead!’ face.

However, he didn’t stop. Family, including Dh, had to come in and talk to him, all to no avail. He didn’t yell. He didn’t scream. His words weren’t nasty or things I couldn’t repeat. But, they were not the words of a child happy to move out of our in-laws’ home and into our own home where he could get to all his stuff. Heck-a-no.

Two days later, escrow/lender/legal paperwork in the works, and he’s still not changed his mind. Now, he’s not entirely wrong. Our house is the smaller of the three neighbors that surround us. (We back up to a gorgeous forest.) But, it’s bigger than other homes beyond those ‘mansions’ and bigger than many other homes that are in the neighborhood. We aren’t, by far, the “poor” people. In fact, if I could get him to listen, there don’t appear to be “poor” people, even if I wanted to go there with my commentary. (I don’t, so please just take what I’m saying in the spirit of the story, not the literal sense. Hmmph.)

Not sure what it’s going to take, but he’s not having any of it right now. We’ll continue to work on it with him over the coming weeks before the close of escrow. We’re thoroughly excited…”we” not necessarily including BB, but we don’t let that dampen the mood. We’ve looked at a lot of houses, configured a lot of budget plans, and decided what’s important to us. Local to our family, same schools they’re already in, one-story, good amount of land to garden, and room to relax without hearing our neighbor’s breathe. (In fact, we can barely see our neighbors.) We got that. All of it. And more. Jackpot. Now I just hope BB will adapt to it before we move in, though I have no doubt a few days of easy pool access will play a big part in making our new house feel like home.

I did a day in the life a couple of years ago. Things have drastically changed since then, and not just with the move and new lifestyle, but with BB aka Barnacle Boy. I’ll chronicle it, knowing that when I do it again in another year or two, things will again be new and improved. It also gives a birds-eye view of what a day dealing with high-functioning autism is like, since the TV shows and people they interview on the news really don’t necessarily do it justice. (But I do have to say, NBC’s “Parenthood” does a pretty darn good job.)

Each day is unique. You never know what you’re going to get. You go to bed each night, exhausted every other parent, and hope tomorrow is a good day. You don’t define “good,” because good could just mean “better.” It could mean better than today, better than yesterday, or just better than the norm. And the norm is highly subjective.

I’ve chosen Tuesday to dissect. No particular reason other than I can remember it sufficiently and it’s recent enough to have validity. Dh wakes up at 6:15 and showers; BB has been sleeping on a daybed in our room (in our temporary living quarters) and hears Dh showering, yet stays in bed until Dh nudges him with an early morning cuddle that it’s time to get up. BB groans. “I don’t want to.” Yet, buddy, you are. Out of bed he goes, and he immediately asks if he can take a shower. Sure thing, hop on in, your clothes will be waiting for you when you get out. Six minutes later, he appears next to my side of the bed, dripping, wrapped in a towel and waiting for me to dry him. I’m bleary-eyed, I don’t sleep well and it was just another night of not getting enough sleep. I dry him, I help him get dressed, and I head out to grab my half-caff coffee. It’s not enough caffeine, but the real stuff makes me uber-jittery. I drink it sometimes, but if I do it daily, I am a headachy, jittery mess, so I do it here and there.

As Dh is making him scrambled eggs, to be served with a banana, BB is talking about the protein and asking for his chocolate milk. He’s on a fitness kick aka new obsession, and wants to lift weights, eat properly and do lunges/squats to get rid of non-existent leg fat. I make his lunch — a turkey sandwich with only mustard, some Ritz crackers, and a few chocolate chip cookies. He likes extras to share with his friends, and if that helps him socialize, I’ll give him the whole box. BB starts to realize that he still doesn’t want to go to school, and he begins to yell about how much his throat hurts. (He missed a day last week because his burping stim had started to cause acid to come back into his mouth, and it was painful.) No go, Dude, that was last week, this is now and now you’re going to school. BB’s uncle has to load the cousin, my nephew, into the car on his own while Dh tries to talk BB into going, so he doesn’t have to carry him to the car like he did one day last week. He fights, yells and gets quite the attitude going, sort of a cross between a real meltdown and a quasi-meltdown, and off they finally go. I breathe a sigh of relief, and start working. (Still working from home here in the new house.)

Several hours later, dh and I dress to go to the IEP. When I say dress, I use that term very loosely. Until last night, we didn’t all have access to our clothing, and we were still re-wearing the same outfits that got us through the week-long drive and the first week of settling in. Clothes that were supposed to last us three weeks were getting boring, and we had nothing appropriate for a meeting. Jeans it was. We did get a chance to mention during our meeting why we were so casually dressed, but it didn’t seem to be an issue. IEP went well – we didn’t have to ask or beg for anything, which is a successful IEP in our eyes, and we left feeling reaffirmed that the move was indeed, again, a good choice. Social skills is at the top of the list, and the school recognizes the importance of that. I didn’t have to open my notebook of years’ worth of IEPs, articles, lists, assessments…not even once. We left happy, and we returned home so I could get back to work. Dh is mid-job-hunt, and hopefully will have something soon, after voluntarily leaving his good job of 20 years.

Dh left to go get BB, and when he returned, BB was happy. Smiling. Talking about a potential girlfriend, whose name he couldn’t remember. Ah, young love. He got a big cup of chocolate milk and sat down to do his homework. Ten minutes later, he was off. “Mom, I’m done! Going to go play with my dog now.” (His service dog has assimilated out here quite nicely, and loves to run in the big grassy fields.) I look at his homework, too late, and see where he’s written, “Sorry, can’t do this. No calc. 😦 ”  Really?? I approach him. BB, you can’t just write a note. You have to try. Here, let’s see what we can do. Instead, meltdown. Big time. Door slams. He yells. I am the world’s worst mother. Okay, BB, no laptop again today. FINE, Mom. You’re the laziest mother too! Well, okay, now I’m taking your DSi XL, his newest and other most important possession. (I did have to show dh where I hid it, in case I forgot, which wouldn’t be the first time.) Dh is out on an errand, and when he returns, we approach BB together. It’s not okay, BB, to yell at your mom, slam a door, say mean things and refuse to do your homework. We get it all worked out, and he heads out to the pool. He just this weekend learned how to fully swim on his own, and he was eager to do it more. Problem is, it’s only 70 or so here. He realizes this, spends 20 minutes in the pool, and decides he’s had enough. Good deal, it’s cold out here supervising you. Dh comes back from his errand, and decides a quick dip in the pool is a good idea. BB notices he’ll have company IN the pool, not just someone watching him, and jumps back in, shivering before he gets water above his knees. They swim for about ten minutes, and BB hops out, needing again to be dried.

He runs inside, grabs a bag of Doritos and says it’s time to get dressed and play more with his dog. Hey, this no laptop/DSi stuff is keeping him outside more, getting more activity, not such a bad thing! Sneaky parents, aren’t we? We just got lucky, that’s all. Dinner time comes around, and he’s mad because he’s not allowed to drive the truck that the teens use to drive around the farm. Uhm, Honey, you’re nine. Nine year olds don’t drive. But Daddy can take you for a ride on the quad. NO! Alrighty then, be angry. He refuses his cheeseless burger and Dh makes him chicken wings. Nice giving in there, Daddio, he’s supposed to expand his diet…but I only think this, I don’t say it. It’s been a day of battles and this one’s not worth fighting. If he eats a good amount, he eats, the “what” doesn’t always matter.

As dinner was late, he took his meds and declared it bedtime. Cool. Shower, jammies, cuddle, and he tries to fall asleep to some inane but clean TV show. (Not always easy to find.) He insists I stay in there with him, so I lay down with the Yorkie and ‘sleep.’ Not really, but he doesn’t know that. Soon enough, he’s out enough to shut his eyes, tells me I can change the channel on my TV (gee, thanks) and goes to sleep. I debate whether or not to be social and go hang out with everyone in the family room, or get some sleep. Sleep wins, though I do hear laughter. I brush my teeth, hope for at least six hours of real sleep, and Dh appears, everyone was going to bed. Oh good, so I only look partially anti-social. But I’m tired, so I only half-care. Dh takes his glasses off immediately, a signal he’s going straight to sleep, no TV, so I decide against turning on the light and finishing the book I’m reading, Jodi Picoult’s “House Rules.” I’m almost to page 400, and dying to know how it turns out. Thing is, if I keep being as tired (or lazy, as BB would call it), it will be a little while. I lay down, listen to BB have a nightmare, then his service dog (who lays right next to him on the floor, on a special bed) has what sounds like a bad dream, and again hope I get a decent amount of restorative sleep, a term I heard Dr. Oz, who I don’t normally watch, use on a show earlier this week. With that, I close my eyes and am out. The end.

Some days are pretty boring, and now that we’ve cut back our errands and activities, by choice, we spend a lot more time just living — we sit by the pool or the fire pit or just enjoying the sun and sound of birds. (Occasionally, we hear the sound of hunters and we all jump, but I’m told we’ll get used to that.) BB tells us some days that he loves it here, other days he says he hates it. That’s usually anger talking, and we disregard, but it sure does make for some entertaining days. Autism — never the same thing, always unique. Always an adventure.

…and we just happened to end up here in the south.

Finally, it happened. We sold our house and closed escrow on 3/24. We had three days to pack it up and get outta Dodge. Gladly. We ended up at a KOA for a couple of days, ensuring our 53′ trailer full of way too many things was picked up by the transportation company hired to drive it out for us. (And at a significantly decreased cost over using a professional moving company, even with the cost of the trailer factored in we saved over $12k. And now we have storage for our belongings until our house is built.)

The drive went well. At the time, it was on/off boring, exhausting, exciting, interesting, tedious, and expensive. Our caravan consisted of our SUV pulling our 32′ travel trailer, otherwise known as the RV, driven by DH and navigated by our 15 yod, carrying the 14-year-old Husky. I followed behind in my sporty sports car, carrying the 90-pound service dog in the back seat (and I do mean the WHOLE back seat), the little Yorkshire Terrier on my lap, and BB in his handmade seatbelt covers to my right. Following me was my son in my husband’s car, with the backseat/floor full of cages for our guinea pig, turtle and bearded dragon. BB was usually carrying his DS, covered in his blue blankie because the sun made it hard for him to see the DS. We drove to the Grand Canyon right before sunset, and ended up in a comfortable KOA in Arizona, resting with a bottle of wine and homemade burritos. Ahhh, sounds nice for a long roadtrip, right?

Let’s see, what did I leave out. Oh yes, the truck inexplicably died at the top of the highest pass outside of Scottsdale, Arizona. Poof. No smoke, no sound, no power. Fifteen minutes later, we re-started, it worked, we drove. Leaving Gallup, New Mexico on Tuesday, a tire on the SUV went flat…in the midst of an hour-long delay due to a bad rockslide, where we ended up going 2-3mph. We made it to an offramp, where very nice Arizona transportation workers allowed us to change the tire on the onramp on the other side, as it was closed to traffic because too many special people were trying to utilize the ramps as shortcuts around the traffic. (Arizona, what a great idea you have! Other states, listen up…implement this practice! Stop the special people!!) Back to my story…we get back on the freeway, make it another hour and we see the SUV/RV start to fishtail. Scary stuff. My baby! My baby’s in there! (DH tells me later “I see where I stand. The dog wants to know why you didn’t worry about him either.”) He gets it safely to the side of the road, where we learn the back left tire had shredded, and the rim was shot. Because of the aforementioned flat tire, being in the midst of nowhere, and being stuck in a one-hour delay for the rockslide, we’d not been able to reach a service station to repair the spare. So we had to buckle down and call AAA.

I will spare you all the tired eyeballs that will result from reading that saga, but suffice it to say, AAA stunk. Big time. After an hour-plus alongside a very busy freeway in high winds — three cars, a disabled vehicle, a windblown RV and an autistic child — the SUV was rescued…but ended up with it and DH (and the dog!) stuck on the other side of the freeway, 30 miles west of me, out of gas..then they couldn’t figure out how to get it started. Three hours later, me and the RV were rescued, but DH was still stranded..cold and hungry. Long story short, we were literally dropped by a rude towtruck company owner at another KOA, off-center and unable to open our slideout or use all our hookups, around 630pm. DH was still stuck until around 7pm, and he made it to our KOA spot around 800pm, four new tires and spare. AAA, still waiting on the reimbursements and admittance you won’t hold these two, ahem, “tows” on our record since I hardly think they qualify. We ended up backwards and a day behind, but oh the stories we can tell now! (How I renew our auto club membership will NOT  be a story I’ll be able to tell. Pay on our own sounds like a good plan.)

The rest of the trip was fairly uneventful. We made it to our destination on Saturday instead of Friday, but saw a lot of hilarious things and really could say it was a good time after all was said and done. We did have a few meltdowns, the scariest of which was at the Grand Canyon, but that was resolved after, hmmm, 40 minutes or so? People still stare at kids with meltdowns, even if they’re faced with literally one of the most gorgeous distractions in the world. Go figure. Kid in tantrum, Grand Canyon…hmmmm, I’d look at the Grand Canyon, but that’s just me.

BB’s doing really well. Settling in here has been easy, he’s surrounded by family and a relaxing environment. He’s got his dog, and a lot of room to run. Couldn’t ask for more.

I’ll update tomorrow on the school situation. Too much for one entry already!

I was recently lent this book by someone in the education field, someone who I was really pleased to meet and am very thankful for, and I’ve only known her a couple of days. She lent me this book within minutes of meeting me, a Southern sense of generosity I am quickly growing to love and appreciate, and hoping to emulate.  Not only am I excited because I haven’t had a good book to read in months (due to the move) but I love Jodi Picoult books, and this book is right down my alley of interest because its focus is on a family dealing with Aspergers, a mild form of autism. (Though I hate to use the word “mild,” because even the mildest of autism labels on a bad day can be devastating.)

Since the move, my back has been acting up — I guess herniated and bulging discs tend to not improve when you sit in a car driving for ten hours a day — and I’ve had to take pain meds for my migraines twice. Not a great track record for being here less than two weeks, and I hate to look like a wimp to people who haven’t been around me 24/7 for long. I’m also plain out tired much more frequently than normal. (I had high hopes of staying up till 10pm at least, get things done, just hang out with my husband, blog, you know, all that romantic stuff. Ha.) A book is the perfect thing to add in when I’m not as agile as I’d like to be and I’m tired, though I hate to be tired. It wastes my time. Then again, maybe it’s a sign to chill out, slow down, and enjoy what’s happening right now, this process of starting over, to remember it, to live it, and to enjoy it. To be philosophical when I’m normally not, by remembering life isn’t just about achieving your goals, but the steps you take to get there.

While I’m only about ten pages into the book, I am sucked in. Jodi does an amazing job of portraying real-life Aspergers/autism — she gets it. She thanks a large group of people for helping her, and I thank them for sharing their very personal details, but I also thank Jodi moreso for wording it in a way that’s believable and will help the general public understand what we go through. The meltdowns in public for tiny things. The stares that burn you despite years of practice ignoring them. The need for routine and the critical effort we parents put forward to focus on the big issues and let the little ones slide as necessary. Within the first two pages of text, I found so many of the little things that we deal with daily, put in print where I could read to my husband and say “WOW. Someone GETS it. Now others will GET it.”

I have to admit to some guilt when I read a chapter from the brother’s perspective. I’ve always felt my other children get short shrift at times, but what do you do? You have only two arms and can only be in one place at a time. When one child’s huddled on the floor shrieking, you can’t lift him up and throw him into a car, buckle him in, and safely drive to a DMV driver’s license appointment. You want to listen to your other child and give them the time they need and deserve, but you’re mentally drained from forcing your ASD child to go to school. You feel guilty that you can’t do it all, but you feel guilty for thinking anything that even slightly, and only to yourself, implies that you would begrudge your ASD child every ounce of energy needed to improve or even just get by. Guilt, it’s all around if you let it in.

I hope to read some from Jacob’s perspective soon. The autistic mind fascinates me, and any little bit of understanding I can gain will only benefit us, even if I don’t like what I hear. I am thankful I am not going this alone, as the mom in “House Rules” is, but I am impressed with her outlook and her realistic struggle to do it all, and do it all right, while accepting that she can’t.

I hope to dive in and read another 100 pages or so this evening, though I don’t want to be rude and hide in the bedroom again, as I’ve had to do a few times for either a backache or a headache. Me, the runner, avid exercise enthusiast, wannabe personal trainer and health nut, dealing with health issues when I least have the time for them. There’s work, my son, my other kids, my husband, the animals, and so many other things I want to do — we gardened (planted potatoes, a variety of peppers, beans, etc.), we swung at some golf balls, we talk, and we just plain out live. In California, we ran from one thing to another, only really kicking back to watched Tivo’d shows together, a Nascar race, or visit friends. Then there were the innumerable errands to Target, Kohl’s, Gamestop, and of course, Starbucks. Relaxing and ‘living’ occurred between all the ‘have to’ events. Strangely enough, I don’t miss any of that. I have replaced the extra expenditures with a cup of coffee enjoyed while watching BB chase his dog around the backyard. I have replaced the need for more clothes by wearing the same tank top twice in 10 days — gasp! It’s possible! Only the family sees me anyway, and there’s a strange joy in saving money. Who knew. (And having an unemployed husband will also make that easier…though that’s not for long. He’s having a really hard time not working, he’s the kind who can’t sit still and must be productive and active all day, every day, but he’s enjoying handling school issues and dropoffs/pickups. He found he enjoys mowing and tilling a garden, and bringing me another cup of coffee. And I’m enjoying having him around more.)

To the family of Nadia, the little girl with autism who was recently found after being missing for 4-5 days, God bless you. We breathed a sigh of relief when we heard you were safe and surrounded by those who love you. May your family and you get the privacy you need to recoup. Another miracle occurred, and she’s home.

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