Autism Watch: 2007

Archive for the ‘Autism in the Family’ Category

I’m often asked “I don’t know how you do it.” Admittedly, there are days I wonder how we stay sane, but every parent, every family, faces their own challenges. My response? “What else do you do but love your child and go on, one day at a time. And laugh.” Really, are there options? I think everyone can rise to the challenge if needed to, and honestly, while I’d love my son’s issues to be easier for him to deal with, I wouldn’t change him, just his ability to function in the world, happily.

So, on that note, I’m going to share what an average day in our home is like. I don’t want anyone falling asleep drooling on their keyboard before they’re able to find something more titillating online to read, so I’ll try to keep it short, yet I have to fill it in with candor to make it really understandable. Bear with me. 😉

A typical day begins with my alarm going off around 5:30am, as I start work at 6:00am online.  Ds wakes up somewhere around there, and frequently wants to climb in my bed, where he feels ‘safe.’ He sleeps another hour or so while I work, quietly tapping the keyboard so I don’t wake him, volume off. When he wakes up, I have to try and gauge his mood: angry? happy? blah? With ds, that’s about all you get. He’s a child of extremes, in all senses of the word. If he’s happy, it’ll be an easier morning, but then again, that can change in a heartbeat. Let’s take Tuesday, for example.

He wakes up at 6:15am, but this time won’t go back to sleep. I tell him he’s got an hour to play whatever game he wants to, and he chooses Insaniquarium Deluxe, which we bought a couple of months ago after he bugged incessantly. (He’s now so much of a professional with the game, he should help program it.) After the hour is up, I take him downstairs for his pancakes (the only thing he wants for breakfast every day, God help me if we’re out of them) and he realizes that his 13-year-old sister is still in the kitchen.  She’s about five minutes away from leaving, and in those five minutes, he went from yelling at her to hitting himself, me, and throwing anything within range. Telling him how irrational he was being wasn’t going to work when he was barely able to hear anything I say over his rage, both internally and externally. I talked him down until she left, but the day was doomed. He’d hit me in the face, though no bruises/cuts, just a solid ouch. The other older sibs weren’t even welcome near him, which is unusual as he normally will allow his 19-year-old sister to help, though not when he’s completely over the edge..and I guess he was this time.

Fast forward a bit, he’s eating his pancakes, which were two medium-sized, on the flat side, not too brown, and cut in perfect criss-cross patterns with the just-so amount of syrup. (See-rup, not ser-rup.) Oh, and his ‘coffee.’ (Chocolate almond milk, of the Pacific Diamond brand.) In the right cup with the blue lid so he can sip like Mom does out of her coffee to-go mug. He’s still ranting about his sister, but it’s lessening. He eyes his outfit for the day, and announces that the jeans won’t cut it. Lately, only “softs” will do. “Softs” are sweat pants without any elastic at the bottom, lounge-pants, or running pants of the non-net/non-plastic/non-noisy variety. Finding more in April, in California, so he doesn’t have to re-wear the same 3-4 pairs, is getting difficult, and the new pairs I bought at Target last week (on clearance, only place I could find them) are all too big..and they don’t shrink no matter what you do.

On with the softs, jeans banished back to the drawer, and then he has to find out what I’ve packed in his lunch sack. “And Mom, the snack needs to go in my lunch bag now, I don’t eat it at snack much but I do want it at lunch.” Okay, sure, anything, let’s go brush your teeth. Teeth brushed, we head to his sister’s truck, the school limo, as she pulls up at the end of the driveway daily. He climbs in the back seat, seatbelts himself, then yells that she has to stop, he needs one more hug and kiss. Hugged and kissed several more times, he’s on his way. We’re already exhausted, yet when he gets to school, he realizes the snacks aren’t in the paper sack (Mom!!) and he has to fix it, and the sub doesn’t seem to have the patience with him making the change with her waiting on him to finish. (And I wonder to myself, as I call him by name, has she been warned? Does she know? Maybe his aide filled her in?)

School pick-up time in the afternoon arrives, and I head to the parking lot early so I can get a spot. Even early, and you sometimes have to fight with those ignoring traffic signs to take a prohibited shortcut, which can be infuriating. (Side note: California schools don’t typically have parking-lots. Ds does not like a long walk to the car.) I park, wait, and when he finally arrives at the gate, it’s minus a backpack. We trek back to get it, walk away, and realize that his headphones aren’t in there. He’s had a serious problem with “cunstodians” lately, convinced they are the reason his water bottle is gone daily, and now it’s segued into anything else that is missing. (Canadians, don’t be offended, but initially he was yelling “Those darn Canadians!” “Canadians?” “Yes, the people that clean the school.”) The substitute teacher (don’t get me started on how that alone can throw him for a loop) had already locked the door, so he had to run in another room to loop around. He comes back shortly, starting to sob. The darn cunstodians had apparently already beaten him to the headphones. The teacher of the looped room comes to us, and thankfully knew him from early mainstreaming days. She offers to help, and between her and the sub (still there, just the only room with a locked door so early) they found the headphones on the floor. Those darn cunstodians must have moved things around..they are fast, invisible people. (Can they come clean my house??)

We get home, but on the way, he has to vent on how mean the rest of the kids in the class are. Okay, Honey, you’ve said that three times now, we have to move onto a different topic. Grumble grumble Guitar Hero grumble grumble stupid something-or-other grumble. Back at home (thankfully, it’s a 3 minute drive in traffic) and I warn dh it’s been a rough day. I get the “hmmph, you are crazy, what’s the deal?” look that we wives all love. I sigh, breathe deeply, and continue into the house where it takes all two minutes before ds flips out that the cheat codes dd brought home from school aren’t something we want him using on Guitar Hero. Major flipout. Dh finally gets why I said rough day. (Ha. Take back the crazy look!) Cancellation of plans for errands we were running in preparation for our weekend at the Nascar races. After dh got him to stop throwing things and hurting himself, the pendulum swung to the sad, sobbing side and he began to wish he’d “never been borned, he’s too stupid to live, no one likes him.” It’s heartbreaking. It doesn’t matter how many years he’s been diagnosed, or what improvements he’s made (which are many), it still kills me to see him do that. There are times I want to just hug him and never let him go….many times. Frequently. But, we can’t hide in the closet. I grab him, and we rock for 15 minutes in the glider chair. He likes this chair even more since he’s learned that I rocked him in it as a newborn, nursed him in that chair, and watched tv with him on my lap as he grew. Finally, he’s quiet and wants to go play Guitar Hero, minus those pesky cheat codes.

However, “stinky” dd is still downstairs. (What time is it? Only 3:45pm? How can that be?) Minor anger. “Stinky” goes to do her homework, out of his line of sight (not by his request, it’s just where we’ve always got her doing her homework — close enough to get help, but far enough away from the TV and Wii to not be distracted) and he’s calm. We decide to go run our errand, hoping it only takes the hour we expect.

We’re back an hour and a half later, and ds is still playing Guitar Hero. Is the one homework item done? That would be a no…but both he and his 19-year-old sister are in career-mode and have each won a challenge. Good to know. Now turn off the Wii. We make dinner, ds eats his chicken nuggets (I don’t want a stupid burrito!) and moves on to play Nascar on the Gamecube upstairs. And then frisbee…in the house. But by now, he’s dressed in his green and white cat-in-the-hat hat, black gloves with bones painted on the outside to look like skeleton hands, a sword in his pirate belt, a black/red cape around his neck, and a pirate chain hanging from his arms. Oh, and the bandanna wrapped around his head, under the voluminous hat. (By the way, this is typical standard wear around the house.) I’m working on kitchen clean-up from the week’s worth of dairy-free pancakes I’ve just made for him, thinking about how I’ve got to make his dairy-free chocolate chip cookies in a couple of days. It’s nearing bath time when he decides he has to play out back. (We must have had ESP when we planned the backyard six years ago, as it’s entirely ds-proof, and he loves it out there.) He returns inside, hyper as ever, and takes his bath. Ahhhh, blessed warm water. He is definitely a “Calgon, take me away” child, as he lays in that tub until he’s prune-y if we’d let him. Into jammies, another round of Insaniquarium Deluxe while we get ready for bed, and our “ahhhh” moment? He comes and announces he’s tired and wants to cuddle while he falls asleep. In minutes, he’s softly snoring on the pillow between us, as cute as could be.

Someone who’s not the parent of an autistic child may say “wow, a lot of accommodations made for him. Why not teach him to deal with things? Why let him be in charge of routines?” but we see it differently. We have to pick our battles. If we can get him to eat, I’ll cut in any pattern he wants. I’ll buy stock in chicken nuggets..it sure beats him refusing to eat, and before you say “He’ll eat if he’s hungry enough,” you haven’t been around an autistic child very much. And that’s just one example of a real reason for accommodations. Battles are very real when your child is as aggressive and self-injurious as mine is. And mine is what many people would call “high-functioning.” (And whether we like that term or not, it’s out there, and it’s something many people who don’t have autistic kids will at least somehow understand.) Many autistic children aren’t violent or aggressive; many are. And it doesn’t matter what level of functioning they’re at, as every autistic child displays different tendencies. We’ve learned to pick and choose what’s most important. I’d prefer stopping him from pulling out his eyebrows, tearing out chunks of hair, or scraping skin off his face with his fingernails over making him go into the kitchen at the same time his sister’s there. There’s a time and a place for everything, and this morning was the time I chose to force him to sit with his sister at the table. It may sound like he gets away with a lot, but you have to work with what you’re given. You can’t have unreasonable expectations. If you work on even just one thing at a time, you can do it right, and you have to pick your priorities.

When we first started getting in-home behavioral help, I was new to autism. Big time new. We began with a list of his issues, both observed by the behaviorists, and explained by dh and I, and put them in order of priority. Not hurting himself is always at the top, followed by throwing things, yelling, and so on down the list. We have to make my child prepared to enter the world, but first our home has to be safe, and he has to have a place where he’s happy and comfortable. On days where he’s having meltdown after meltdown, we revert back to the list, and when we can, we’ll go from there and build upon it. But we, “autistic parents” for 3.5 years now, know when that is.

At the end of the day, you’re tired. But who isn’t.

So much to blog about, so little time.

The last week has been a rollercoaster — up, down, up, down, with a curve thrown in here and there. We’re five weeks casein and dairy-free, with no visible difference. We’re not giving up, but it sure isn’t encouraging. Maybe my son is in the percentage of non-responders, or maybe it takes longer than five weeks? He’s never been a big dairy person, so I’m betting that he’s a non-responder. I still stand behind the GFCF diet — I know too many people whom it has helped — but I do believe that no matter what is said, it does not visibly help everyone. Internally? Who knows. Ds is still having potty accidents, still isn’t ‘regular,’ and we honestly see zero change, but it wouldn’t stop me from recommending to others that they try it, as they may just find their child does improve.

On to the next thing. We made the difficult decision recently to try our son on Risperdal. If you read my blog regularly, you’ve seen my son’s tantrums and meltdowns are worse. The mood swings are horrific, along with the self-injurious behavior, and I’m tired of being hit, bit, kicked, and having ds’s sibs having to tolerate it as well. And hearing him yell to all of us how he hates us, hates himself, wants to hurt himself, wants to die, isn’t liked by anyone, etc…I really pray this medication helps ds get some control over himself. I know he can’t want to be this way. On one hand, it’s heartbreaking to have to make this decision, but when you get to the point where you need to try it, for your child, I think you’ll know it. You need to make that decision for yourself, not for anyone else. I’ve run into my share of ‘you don’t need to medicate your child’ people. That’s fine, they don’t have to medicate their child, they’re right. But I get to make that choice for my own son, and I’d prefer this medication over what he’s doing to himself otherwise, and if this helps him be happy, who has the audacity to say it’s not worth it? Educate yourself on the side-effects and be ready for what may happen as best possible, but in the end, make the decision based on your own family alone.

Until we see some change with this medication, we won’t be dragging ds to any birthday parties. I also won’t be taking him shopping or to other loud, crowded places. It really is that bad. So far, we see more compliance and less anger, so we are continuing to pray this medication holds the key to future improvement, along with continued behavioral and social skills help. Picking your child up from school, and listening to him sob quietly the whole way home…no child should have to feel that way. No parent should have to worry if their child is going to make it through a school day without feeling the entire class hates him, that they are all teasing him, or that everyone’s laughing at him, tattling on him, or trying to kick him away from their lunch table. True or imagined, is it really any better? Something needs to change.

Where will I take my son next week? Disneyland. Yep, Disney, even though it’s loud and crowded. The sensory input from the rides seems to overshadow the downsides, at least for a while, so we’re going to head down again, and as always, get the special assistance pass. SO well worth it. If your child is disabled, autistic or otherwise, Disney is wonderful in dealing with special needs children, so don’t hesitate to ask at Guest Services for the help you and your child(ren) need. Without that help, our annual passes would shrivel up in a drawer somewhere, a lot of wasted money, but instead, those passes are now fun, family-oriented Occupational Therapy.

This week, ds has an orthopedist appointment. We want to see if he still has fat feet or pronated ankles or rotating knees and hip. The whole ‘my legs hurt’ issue is one we definitely want to clear up before he’s growing more, and this appointment should help us determine whether or not there are any real problems or if this is just another part of autism spectrum disorder, as one doctor has told us…but we’re not quite ready to just leave it at that if there’s something we can do to help him feel better.

Back to work now — and go vote!

Such a simple phrase, you’d think, right? So easy to ask. Takes two seconds, and it’s just the nice thing to do. Why don’t people actually say it then? And before I go any further — this could be categorized as a rant of something that has annoyed me for quite some time now. I bet many of you can relate; others, you may find it annoying, but that’s okay, it’s my blog, and maybe if someone actually says it out loud, someone will realize “hey, that’s me. Never meant to do that.”

Like everyone else, I had a busy Christmas season. With so much going on, in addition to working right up until Christmas, and maintaining the same, normal schedule of appointments, therapies and whatnot, I didn’t get out paper cards, so I sent out a boatload of e-cards with photos of the four kids together. I didn’t expect responses back, as everyone else is equally busy, but I still have to say I was surprised with a couple of the responses I got. From people who send me things about their own children, no less, I got … wait for it … nothing about my son. Before I sound picky, let me just say it’s part of a pattern. “My son graduated from college!” I give appropriate congrats. “My son is a doctor now!” More appropriate congrats. “My son is getting married!” More appropriate congrats. It really is all about them..even when I throw in a comment on email #372, mentioning that I can’t go somewhere because ds had a bad day or ds has a new therapy appointment. It’s an ongoing thing, and the Christmas card non-response is just one example that shouldn’t disappoint me, because it’s only a card, yet it makes me sigh…one more opportunity for someone to express concern a long friendship should engender, but doesn’t.

 Let me preface this by saying that I am one of the last people to say that every email deserves a long reply or that every picture received requires a laundry list of compliments or questions. People are busy. Life anymore is demanding. Even the most patient of persons can suddenly find themselves so inundated with day-to-day tasks of living that they don’t have time for basic courtesies. That’s okay — but when it happens consistently, constantly, and occurs in every communication, there’s a problem.

Autism used to be one of those things people didn’t talk about a lot. It was the thing that existed but was ignored, the proverbial elephant under the rug. Or like one of my favorite silly but much-needed-laughter-inducing movies, “Scary Movie,” where the Scream character is hiding behind the curtains with his feet sticking out and the blonde girl on the phone saying “I can still see you,” with the character seeming surprised. Awareness has come so far that it no longer seems to be the elephant under the rug, but that doesn’t mean it’s the elephant involved in our discussion either. Many times, it’s the elephant sitting right next to the person who doesn’t have to deal with it firsthand. They know it exists, they look at it from time to time, but can’t quite figure out what to say — so they say nothing, ignoring it even though it may bump into them as it jumps around on the couch, or it may interrupt the conversation when it has a meltdown or it may tell them they smell funny. How people can ignore this is beyond me, but some seem to have it down to an art. (And I realize that in some cases, people just are so self-centered, it has nothing to do with the autism, though I think that’s less common because many people find time to ask about one child or something else going on. It’s hard to believe they run out of time one sentence shy of hitting the goal line.

So just what do I want? (I apologize for my prolific use of the word “so” today. It just seems to fit. So, I’m going to use it a lot.) I want acknowledgement. I don’t want your sympathy, your pity, your help. I just want acknowledgement. My son is a person. He is not autism. He may be autistic, but he is an autistic child. An autistic boy. My autistic son. Notice the qualifier in each of those sentences? He’s a person. Period. His autism changes who he is, helps make him who he is, but he’s still a seven-year-old boy. If someone has a seven-year-old boy suffering from a health issue, people generally ask how he’s doing. But if he’s got autism? Many people simply move on to the next topic. “Beautiful picture!” or “Congratulations to your daughter on her piano recital!” or “How’s your older son doing in college?” But “how’s your son doing?” Bzzzzt.

So, really, what is it I want? It really is as simple as saying “How is your son?” Just because I don’t mention his autism doesn’t mean you can’t mention it. I’m not ashamed of his autism, nor am I afraid of discussing it. I don’t expect you to phrase your questions perfectly if you aren’t dealing with autism, because I know I knew little-to-nothing about it at one point. I don’t expect you to necessarily understand the problems or joys we may be experiencing, but that doesn’t mean we’re worthy of being ignored.

In her book “Louder Than Words,” Jenny McCarthy mentions that when you announce your child has cancer, people show up with food and offers of help, but when you announce your child has autism, the same doesn’t happen. In our case, we had people get impatient with our refusal to maintain the same social schedule, and we had people refuse to try to understand that our son’s explosive diarrhea made it impossible to brave a trip from the confines of the house. People weren’t openminded enough to listen to the explanation that ds “didn’t look autistic” or “didn’t act autistic” at a certain time or on a certain day because we’d bent over backwards to control his environment enough so that he didn’t have a major meltdown. They weren’t willing to learn that we had to pick our battles — yelling at ds because he wouldn’t eat his dinner wasn’t even a consideration when we had to focus on just getting him through a day at a crowded event, where the noises and crowds and smells were causing an internal pileup that would explode later when he felt safe. But I digress…if people don’t understand autism, or aren’t willing to learn, they simply stog being interested. They stay in their cave of “if they’d just learn to parent him differently” or they think, well-intended, ”I don’t want to say the wrong thing, so I say nothing” or they simply say nothing and simply stop inviting us places. We wonder — do those people think that he’ll cause a problem at their party? That he couldn’t handle it, so exclusion and ignorance is better? That he is, or we are, too stupid to notice that he’s left out?

So (there it is again) if you have a friend with an autistic child, or a neighbor, or an acquaintance, or a relative — take a leap. If you’ve not asked about the child in a long time, or ever, try it. I highly doubt you’ll be met with a leap of joy and “WOW, you actually ASKED about him!” Instead, you’ll probably get a quick hesitation while they realize you asked, and a hesitant reply to gauge if you’re really interested. If you are, they’ll know, and you’ll have given a stressed-out or busy, but proud parent an opportunity to talk about a child they love more than life itself. You’ll have tightened a bond with this person much more than you’ll ever know. Maybe it won’t bridge a gap that lack of apparent interest has caused, but we parents are a lot more resilient and forgiving than you may think. We simply don’t have the time and energy to hold a grudge or be hard-hearted. We’re tough, and we know that life happens, and because we don’t want our children judged unfairly, we tend to be less judgmental. So….give it a try.

Me, in the end, I’ve been fortunate. We had a few friends pull the disappearing act in the beginning, unsure of what to do. But it strengthened our bonds with many others, and we found our social circle increasing after we gave others a chance. Some of the initial isolation was our own fault; we simply didn’t want to deal with the stares and ‘what the heck?’ comments (amongst others). We decided to spend our time on our children. It took a very good friend of mine to sit me down and tell me, outright, that I needed to give others a chance, to remind me that people loved us for who we are, not what our house looked like mid-tantrum, and that our son biting me or screaming odd things or messing himself was not going to scare true friends away. She was right. Once I let down the guard a bit, things quickly improved. Now we have a wonderful group of friends to socialize with — they don’t judge, they don’t tell me how to parent (though we talk about parenting a lot), they don’t shake their heads, they don’t hang their heads in shame if ds acts out when they’re with us in public, and they jump in to help. They offer to watch our children so we can get out. They show up at the hospital when dd has a seizure or when ds is sick. They call even while traveling to see how things are going. They offer to run errands, and most importantly? They invite us to their home or to join them on other events. They advocate for my son, they speak up for him, and they love him unconditionally. When he hugs someone out of the blue, they know the excitement we feel. When he gets an award at school, they are happy for him. Those are the only kind of people we want to hang out with anymore. And those people, they are definitely not the few who can’t insert the one quick sentence at least every six months, “How’s your son?”

Most autistic children end up with some kind of occupational therapy as they’re growing up, be it in school or via a private provider. One big thing about O.T. is that the parents are also taught what works and doesn’t work in order to keep their child calm(er) and to maintain a sensory diet. Each kid’s ‘diet’ is unique, but most involve some sort of physical movement. Our occupational therapist suggested we take ds to Disneyland frequently — ds had/has rotary nystagmus (abnormal reaction to spinning/movement) and he needs a lot of physical input to keep his system level, and the heavy-duty rides at Disneyland (Space Mountain, Tower of Terror, Matterhorn, etc.) give him a lot of input. She also suggested a class in some sport (gymnastics, karate, etc.) that would work on physical input while helping with social skills and learning how to behave in a classroom environment. We knew a team sport wouldn’t work; ds has low muscle tone (functional hypotonia) so we weren’t sure what he would contribute to a team, but even more importantly, we knew he’d have tantrums or meltdowns if he was teased, bumped/roughed up, didn’t get to play the part he wanted or as often as he wanted, and a multitude of other things. So, we went for karate. Ds likes the Teenage Mutant Ninja Turtles and he thought their skills were cool. We knew of a couple of good studios, but we also didn’t want to sink a huge amount of money into a uniform and classes in a formal studio setting without testing his interest level. We enrolled him in a less formal (e.g. less costly) course and were pleased to see that he took the rules very seriously: be quiet, don’t disrupt the class, and try the moves. The sensei is a wonderful teacher, and pretty strict with those who disrupt. On week two, ds was trying a side-kick, while laying on the ground, and saw a ponytail from a girl next to him. He loves soft things, so he was running his toes through her ponytail. Yes, we wanted him to stop but the sensei is in charge, and sure enough, he saw it. We feared a major meltdown, but ds took the instruction and never once did anything even the slightest bit questionable again. But that doesn’t mean he always paid attention. There were times where we saw the sarcasm/funny/sarcasm talk of the sensei go right over his head, and he’d pay more attention to his belt, his toes, his belly button, you name it, than the sensei’s instruction. This last week, we knew after two or three minutes that it was going to be a long class. Ds had no focus whatsoever, spinning, playing with his hands, and tilting his head the entire time. The sensei must have picked up on it, and decided it was better to let it go, but it never improved. He barely tried what they were instructed to do, and he was always backwards. His eyes were so vacant, and he seemed so out of it, for lack of a better word. If only I’d had a videocamera, it would have been an enlightening movie. I am taking one next time, as that behavior was scary and it displayed a lot of things we really need help with.

On that same note, Christmas shopping. Autistic child. Do you see where I’m going with this? Today I took my son to Target, just for an hour or less, to buy some gifts for his siblings and his dad. I was concerned with how he’d do in such a busy place, but figured with Target, we could find something for everyone on our list. Off we went. First we almost got hit by another car in the parking lot, someone in a hurry, not paying attention, pulling out into oncoming traffic. Then we get into the store, only to find there are no carts. Shopping with ds requires a cart. We wait until someone leaves one, and ds decides that there were cute things in the dollar aisle for everyone, including a book, “Ducky’s Rainbow Delight,” for my 19 yo daughter. After I talked him out of that, the Icee requests started. For the next 45 minutes, “Can I get an Icee? Why can’t I get an Icee? Why is the Icee line so long? Can I get an Icee now? When can I get my Icee? Is the Icee line shorter yet? Why can’t I shop with my Icee? How long is the Icee line now? Is the Icee line shorter yet? Can I get my Icee NOW?” We’d head to one section, look for a minute, and get one or three Icee questions. Section after section, question after question. We finally chose the gifts (easier if you finally say “If you want that Icee, choose. Now.”) and got things I think everyone will really like, and dd headed for the Icee line while ds and I went through the long checkout line. We finished simultaneously, and then the “What kind of Icee should I get? What flavor is green? Why is that one always broken?” questions started. Solve one question, another just pops up. But, I don’t think I’ll need to go back into a store until the day after Christmas, when we just have to go and see what Christmas decorations we can buy at half-price. Maybe.

So other than Christmas shopping, what else changes during the holidays when your child (or your grandchild, niece, nephew, sibling, etc.) is autistic? I’ve got a list of things, but that’s for another blog. I also want to share our story about removing all the toxins from our home in an effort to have a more green, healthier home for our children. If you’ve got children, it’s something you need to consider, even if on a small scale, as every little bit helps. (Mercury isn’t the only thing that doesn’t belong in your home or child.)

The next couple of days are busy. We leave in 30 minutes for a party, then after church tomorrow, another party, so I may not get back on my blog until after Christmas. In case, I want to take some time now to wish everyone a very merry Christmas and a joyous celebration with loved ones.

My seven-year-old son is a really bad teeth grinder. He’s always ground his teeth. It’s a noisy sound, a nails-on-the-chalkboard sound that makes me attempt to stick my fingers inside his wired-tight jaws and pop them apart, but it never works and sometimes I get bitten as his teeth snap back together like a gator’s might. Snap. At his dental check-up/cleaning last month, we learned that the dentist was afraid he was wearing down a crown to the point it would require replacement. We hoped it wouldn’t, but learned on Monday that it does.

Next week, he goes in for another root canal, as there’s a definite crack back there and a serious risk of infection. They’ll put a new, non-amalgam-related crown in his mouth. He knows it’s going to happen, and so far, he’s not freaking out about it. But I worry, and not just because of what he might incur during the appointment but because of what happens afterwards: regression.

Almost two years ago, he had three root canals and a couple of fillings. He was a reflux baby, and the enamel was worn off those teeth, so they became problematic early. He also was, as many autistic children are, really averse to brushing his teeth, and it took a lot of effort that wasn’t always successful. The first appointment…well, I will remember it vividly forever. It was the first time one of my children has ever had a tough time in the dentist’s chair, and it was messy. The dentist had to do her work, and help calm him and hold him still, while the assistant also helped hold him still while holding her tools, and I laid in the chair, leaning on him, trying to hold his hands out of the way. We had chosen nitrous, and he hated the hissing sound. By the end of the appointment, he had some rash on his face and neck from all the movement and he was so badly stressed out and frantic, I refused to take him to the next of the three appointments he needed to finish all the work. Dh, out-of-state on a business trip at the time, got a lovely phonecall from me, where I proceeded to tell him that all his traveling for work would have to be on hold long enough for him to do the next appointment. He agreed. Anyway, it took days and days until ds was back to himself, well over a week. He hated the idea of another appointment, and so did I. Yet, dh got him there, and to the next one (rescheduled for first of the day, when the office wasn’t even officially open so no one else would be waiting, listening or needing any help) and the process was completed without the mess of the first one. Was he more used to it? Was dad’s presence better than mine? Who knows, but we won’t push it — dh is doing this appointment next week, too.

We’re lucky — we have a wonderful dentist who has a lot of experience with kids on the spectrum. She has one of her own. When our regular dentist said we needed to find a pediatrics dentist, she was one of the numbers we were given, and I did grill the receptionist heavily, knowing not just any peds. dentist would work. It paid off. Her office is built around children, with flat-panel TVs on the ceiling above the chairs, children get to choose what to watch, and the walls are covered in relaxing but eye-catching murals. After the appointment, they get coins for use in the toy machines, and the goodie bag must cost the dentist office a pretty penny each month with the spinbrushes and other items each includes. So, if your child needs a dentist and you’re iffy about yours, look around. Better ones are out there. Don’t settle for one that makes you uncomfortable or doesn’t listen to your concerns. Ours knows our issue with mercury, and doesn’t hassle us. We’re given a lot of options, and above all, she’s understanding with our son. When he can’t take a routine cleaning because the cleaning gel bugs him, she works with him to find a better solution. (New special gel that’s not gritty and comes in a better flavor.) When a machine is new to him, she lets him play with it so he knows exactly what it is before she puts it in his mouth, and better yet, she does that without us having to suggest it. She knows that approaching him slowly is best, and getting in his face takes advanced warning. When he can’t take the smell, she does what she can to dissipate it. (Last cleaning, a new hygienist was in the room and didn’t seem to be aware of his ‘issues,’ until he bit her and I explained. He was crying, the dentist came in, calmly took over and it was done in minutes. Not many dentists will handle things this way.)

Does that mean I’m okay with just signing him up for more work? No, but I also know that an infection can wreak havoc on his system and make things worse, and an infected tooth will bring a whole lotta pain and still need to be fixed. He won’t wear a mouth-guard, but maybe when he’s older he’ll be more willing. Right now, we’re just thrilled that he’s actually sleeping in his own bed…for almost 14 days now!

Know your dentist. Ask questions. Research and if your current dentist doesn’t like it, find a new one.  Dental work is too important to put off yet you don’t want a child who is so afraid to ever return. (And all this coming from me, a major wimp at the dentist’s office, particularly after a root-canal tool broke IN my mouth and had to be surgically removed. But I’m still up-to-date on my appointments, so if I can do it after what I call The Fiasco, so can you!) 

No, it wasn’t me saying that.  I’m not a big happy wait-er, but I don’t yell like that. Okay, not usually at least…

I took my son to the neurologist today. We have a good neuro, but sometimes the wait is a bit long. What can a neuro do for a child with autism? Quite a bit actually, and we’re lucky to have one that we like. Anyway, we got there about 20 minutes early so I was glad I’d brought the Gameboy. Unfortunately, all 317 games in the Gameboy case were ‘boring,’ so he found several things in the lobby to keep him busy.

  • Standing at the receptionist’s desk making popping noises with his mouth
  • Staring through the mail slot into the hallway by the doctor’s office
  • Squeezing the fake stomach in the acid reflux medication advertisement model 
  • Playing “no, you can’t get me, Mom!” in the waiting room, while running around chairs in the empty areas
  • Sticking the entire ring pop in his mouth, ring part and all, while making loud licking sounds

When all those activities ran their course, the yelling started. Don’t worry, I did tell him to stop yelling ‘freakin.’ I’m not sure how the other patients felt about his outbursts, he was getting some looks from all those ‘healthy’ people waiting to see the neurologist after us. I then took him to the restroom, we sat back down, and blessedly we were called right in. Phew.

Ds has to get a panel of blood tests — he’s got unexplained leg/foot pain that won’t go away, resulting in quick leg fatigue and fits when we have to walk or stand for any length of time…say, more than 5 minutes. Let’s hope this blood test gets us going in the right direction.

..and he’s still happy! Not one meltdown!

We spent the afternoon at our friends’ home, a huge Thanksgiving dinner where we were the only non-blood-related guests — but family isn’t just those related by blood. These friends are family, and we had a great time. At one point, I told my friend how ds just doesn’t do this. He doesn’t just get comfortable, smile, giggle and have a meltdown-free afternoon every place we go, but he did today. She said maybe it’s because I was comfortable with him there. After a minute of thought, I realized she was right. I didn’t have to worry about him yelling, being too loud or saying odd random things. (And that he definitely did.) There were no judgmental stares, glares or comments. He was with a family of patient people who talked with him and not to him. So between that and the numerous pets wandering around for him to play with, he was happy. He enjoyed his day, from starting with the Macy’s Thanksgiving Day parade through dinner and then hanging out at our house afterwards.  And for that, I am truly thankful!

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