Took an autism vacation

Okay, not really…autism doesn’t really go on vacation, does it?

In reality, I was simply busy and tired of writing about my daily life and finding something that would be of interest to anyone else, emphasis on that last part. I had no witty stories, no clever anecdotes or no epic tales to tell. And very little time.

Not only did the Yorkie require major surgery the week of Thanksgiving, but then my son’s service dog tore his ACL the week before Christmas. Ka-ching. It’s such a turn of events when the service dog requires us to service him, but it was an honor. He’s such a devoted loving animal, it hurt to see the pain in his eyes and the frustration on his face when he couldn’t get up and around. We don’t kennel him, so restraining an 85 pound animal was no easy feat. Thankfully, the Yorkie survived and is doing wonderful; we’re still working on dissolving the stones in the remaining kidney and hoping to avoid one more surgery to take them out, but she’s happy, healthy and a hairy ball of energy who will kiss you to death. I think she knows what she went through and is thankful to be through it all. Big guy is up and around, limping some but trying to be normal; we still have to stop him from his infamous “Charlie Spin,” but soon he’ll be completely back to normal and have a cool scar to share stories about with his doggy friends.

The holidays were good. Too quiet for me, we’re used to hustle and bustle, and having no friends or interested family in this small town made for a different kind of Christmas, but it’s temporary. It’s only a matter of time before we move back to the big city. Now we just have to find realtor #3, someone reliable who really depends on sales for some income. Who knew that would be so hard to find?

BB is having an off day. Didn’t want to sleep in his room last night, he was sad so she slept in ours. I think the last couple of weeks caught up to him. Spending the night at a friend’s house (a little boy remarkably like him, with wonderful parents), going to the movies, long trips to the vet 2.5 hours away, shopping, bright lights, loud noises, weather change, having friends here, it was all a lot and still, I took him to see We Bought a Zoo last night. Boom, it crashed down … and it didn’t help that I let him drink Dr. Pepper and eat Nerds. Don’t judge me, he’s a kid, I threw caution to the wind and let him be ‘normal’ and while later it caught up to him, he had a fun visit to the movies with me and even volunteered to go shoe shopping after! (What’s a trip to the mall without a visit to shoe stores?? Mamas, give me a ‘heck yeah!’) During quiet parts of the movie, I could him hear tic’ing, this odd breathing noise he makes that qualified him as Tourette’s, though we don’t use the term. (Nor do we use the term ‘autism’ around him, but more on his conversation with me in another entry.)

I hope you all had good holidays and are enjoying a relatively calm and relaxing new year. Onwards and upwards!

Tags: ADHD, aspergers, Autism, autistic, dogs, health, homeschool, parenting

Do We Expect Too Much?

In a perfect world, our children would go without nothing. They’d get every treatment and/or service they need, and we’d not have to pay anymore for it than anyone else with a disability or medical concern, regardless of income. However, as we all know, treatment for autism is still considered ‘experimental’ in many forums, other than ABA, and services are most readily available for those with unlimited bank accounts. For the rest of us? We hope and pray that someone will provide something, anything, and we become the world’s biggest advocates in order to make that happen.

Being an advocate can make an introvert a public speaker. It can give a shy person who doesn’t like to talk to strangers an eloquent speaking ability. It will make a low-key, laidback “go with the flow” mom get on the phone each day and push, in a way she never has before, for answers, and she won’t settle for anything but the right kind of answer.

This is good, right? Well, yes — because if we don’t advocate for our kids, no one will. But, there is a reasonable limit and no matter how desperate we are, I think we need to realize when we’ve reached it.

Today in a group I belong to, someone asked what kind of help they can get on vacation: could they require the hotel to provide a chemical-free room? Could they require the hotel restaurant to provide a nut-free environment? Could they require the state to find a place to find services for their child while on vacation, as in speech and O.T.? And my favorite, could they require the state to provide respite so the parents could go out alone.

You could have heard a pin drop.

No one answered.

There was a couple of coughs and throat-clearing sounds, but no eye contact with the woman who asked the question. It was clearly a mix of “I am at a loss for words” and “I can’t speak for fear I’ll say something I can’t take back.”

In the end, a calm person spoke up and said “Good luck with that. You’re on vacation, something most of us would give our right arm to take, so if it was me, I’d probably be super-glad I could take vacation and sacrifice the week of services.”

Other responses popped in my head: “It’s vacation, no one’s making you take it, why should the state be liable for anything? If you don’t want to miss out, don’t go.” But I didn’t answer.

Somehow, the conversation quickly changed to “Vacation? Cool! Where are you going?”  At first, I was relieved, ahh, re-direction, now she’s changed the subject, no one has to address it, and it was done so politely, she can’t take offense. Then as I thought more about it — and got irritated at her question — I realized that the goal of at least one other parent was to say exactly what I’d been thinking: vacation, an optional thing you don’t have to take, enjoy it, let your kid be a kid while you’re out, and if you don’t get a night out alone, oh well, it’s vacation!!

Then surprisingly, two  moms started making suggestions — call this number, ask this place, etc. There was obvious discomfort that we’d gotten back to the topic. Some people were “mutter mutter, I wish I could afford a vacation,” which was totally off-topic, and others were “Why are we helping her with this when we’re talking about VACATION? We’ve got people here who can’t figure out how they’re going to get through the next day because their child is still in diapers at 14 and the self-injurious behaviors make it so they can’t leave the house to run to the store, much less go on vacation.”

I stayed quiet. I knew no good could come of my contribution then, but I’ll share it here because the more I think about it, the more I think I did a disservice by not speaking up. Sure, it may have been seen as “tsk tsk! She deserves a vacation like everyone else!” but come on, let’s be realistic — no one ‘deserves’ vacation. Yes, everyone deserves to be able to relax, but a vacation is indeed a luxury. The state is not required to jump through hoops to keep your child’s services at three days a week if you voluntarily choose to leave the state; nor are they required to provide you a babysitter so you can go out at night.

Before I had BB, I took vacations. We have three other children, and as BB is six years younger than the youngest of the sibs, we always had children along with us. We didn’t get a night out away from them — a hotel babysitter, IF available, was cost-prohibitive. Plus, we were already on vacation, did I really need to have that added luxury? Nah, I’ve got a lot of years ahead of me to come back and do things I can’ t do with kids along.

This is where I think our requests take a nasty turn. We are definitely in the right when we request things that keep autism services on par with the rest of the medical-needs community; however, when we want MORE than others get, when we see ourselves as more deserving or require things that make life easy instead of just being necessary, we are not only taking money from an already too-small pool, but we are becoming one of those parents, the kind that make people say mean things and it makes it harder for the reasonable requests to be granted.

Flashback to a couple of years ago, when I spoke about a friend of mine complaining that she had to take her son to school each morning. “I have to get dressed!” Wow, poor you. So she made a huge stink and got the local district to bus her child to school each morning to the school she insisted he go to, even though there were many schools closer. Not only was her son on a bus for 40 minutes, but she negotiated it that on days she decided to get dressed and drive him, she’d get paid for every mile. Wow. On one hand, kudos, you must be a heck of a negotiator and the school is a pushover; if they agreed to that, then it’s their problem. On the other hand though? Come on, you are responsible for some normal parenting things and if you choose to move so far away from the school, why is it the school’s problem?

Those are the parents that give others a bad name. I want to be seen as an advocate, not a ball-busting bitch. I want to come to the negotiation table with people who aren’t defensive just knowing they have to meet with yet another parent; I’ve had them tell me before, on our first meeting, “Thank you for being reasonable. We do the best we can, and while it’s not always enough, we appreciate that you’re not yelling at us.” It always amazes me, because I don’t leave that room until my son gets what he needs — but it’s about him, not me, and I think sometimes we forget that. Parents of kids with cancer, heart problems, CP, etc., they don’t get free babysitters, zero co-pays and no deductibles; they have to drive their kids and if they go on vacation, they choose it around appointments or they don’t go. Why are we any different?

“But my son has special needs!” It’s not a weapon, and it shouldn’t be used like one.

Tags: ADHD, aspergers, Autism, autistic, health, parenting, science

Sorry Doesn’t Cut It!!

That’s what BB used to scream at me any time I used the word “sorry.” For anything. It didn’t matter if I told him I was sorry that his toast was too dark (aka had a tinge of color other than white) or if I said I was sorry that he still had to do homework. “Sorry” was unacceptable.

So I won’t try to use it here. Even though I am. Sorry, that is.

Sorry I haven’t blogged in a month. Sorry that I’ve been sporadic lately. Sorry that I’ve been a much better blogger when my son was worse and I had less time than I do now.

Sorry.

In the last few weeks, we:

– continued homeschooling. Score!

– had to make a mad dash (aka 2.5 hour drive) to a critical care animal hospital when our pampered Yorkie was labeled ‘life-threatening’ and she needed special care

– had an open house, showed the house a few times, and lowered the price (everyone loves the house, not the price…)

– took a two-day trip that included 16 hours of driving within the 41 hours from leaving our house until we returned

– made some friends in our new locale

– started soccer and won two out of the first three games! (another S C O R E !!)

And then there was work. Crazy. Busy. But still a job I believe in.

BB has had his days. I made him drive back/forth with me to the doggy hospital a couple of times. 2.5 hours in a car, one way, with an unhappy verbal autistic child is not my idea of a fun drive, but what do you do? There are days he doesn’t want to do his schoolwork, but he rises above it (most times?) and does an amazing job with all of his assignments. In particular, he loves mythology (and volunteers to read it) and science experiment. He’s not big into ‘crafting’ so I have to choose my hands-on (scissors, glue, crayons) projects carefully. But, he is big on telling me about everything he learns. He can give the best running narrative on a topic that you’ve ever heard, complete with his own little autistic spin. Fascinating.

Me, I’ve been working (did I say that already?), still keeping the house in tip top shape for showings, and trying to ‘live’ as though we were just living here and not moving across country any minute. I’m working on my business more, including business management, graphic design, Javascript and PHP (I know how to par-tay!), as well as the meat of it all, cupcakes. Instead of just focusing on good cupcakes, I’ve been focusing on healthy good cupcakes. Gluten-free. Casein-free. Lower sugar. Lower fat. Good additives. Yet, throughout all of that: delicious. Last week, I made pumpkin-butterscotch cupcakes (with a homemade mix of cream cheese frosting and buttercream frosting that has everyone raving and asking for the spoon and a place to hide) and you wouldn’t know it, but they were good for you. Yes, really. Cupcakes that didn’t make you sorry you ate breakfast, cupcakes that didn’t make you re-think eating dinner so you wouldn’t go over your calorie count. And those cupcakes are just the beginning. The goal is a revolution of items that fill a need — your sweet tooth, the thing that almost everyone has, and some people in a bigger way than others — while fulfilling a want, a way to cut your calories, your excess carbs, and your sugar and fat contents. Yum.

Stay tuned.

And my apologies for my absence. I had a lot of good reasons, I promise.

When a Day Goes Bad

BB woke up this morning in an awesome mood. He woke up before me, in fact, and woke me up. (Not something I view as his best choice of the day, as I was having a really cool dream about traveling…) He was being uber-sweet, turning on my coffee pot, and he even got me a big coffee mug and the creamer. Ahhh, life is good. A relaxing morning, a promising day at work, schoolwork planned and prepped, good coffee and a happy BB.

Then it happened.

Mom, I have a headache.

What level? 6.5.

I give him an ibuprofen and get him settled on his bed with a movie.

Thirty minutes later, it’s 7.5. He decides he wants to forego the next prescription in his migraine arsenal, so I let him be in charge.

Thirty minutes later, it’s still 7.5. Sorry, BB hon, you need to think about the pill.

“Mom, it makes me dopey.”

Yes, son, I realize that, but dopey or pain, out of the two, isn’t dopey better?

He takes the pill. Cut in four tiny pieces.

He snoozles a little, watches more tv, and two hours later, he’s out of the room, bored.

Then what I call a depression cycle rolls in. He sobs, he cries, he’s bored, this day is bad, it’s awful, it stinks, it’s not a good day.

Bud, I’m right there with you. Not only do you feel like crap, but there’s a work issue that’s out of my hands. Sometimes, being a manager means you have to make or take part in decisions that are difficult. Things that have nothing to do with you personally but are part of the job; in management, decisions are made that are in the best interest of the company, and they’re not always pretty. I guess it’s human nature to shoot the messenger, but it can really make you wonder sometimes why people don’t understand that or want to make you out to be the bad guy when you’re not operating in a vacuum. I’d like to be all-powerful, in charge of all the things I can do each day without getting approval, different from now, but then again? Maybe not. Oh well, it’s a job and I’m fortunate. This job allows me to help my family and be home with BB, and he desperately needs it.

So what do I do? I turn off my work machine. I get out the popcorn maker and get BB settled on the couch. Turn on On Demand, rent Rio, and laugh together. Perfect medicine for both of us.

Autism has brought me extremely close to my son. It’s not something I’d ask for — my other kids obviously can’t get the same amount of attention, and it’s not fair and I hate it daily — but you take what you’re given and you move forward with it. I can’t afford to let a bad day at work get me down, and it’s a three-day weekend, time for a lot of prayer, relaxation, hanging with the kids and time with my best friend, my husband.

Migraines, stay away, we’re done with you here for a while. Give the kid a break, okay?

Tags: ADHD, aspergers, Autism, autistic, meltdown, migraine, rio

Latest News About Autism

Autism, ADHD Share Genetic Similarities: Good article by Fox News.com and the title gives you a big clue what it’s about      I saw this one in a news feed earlier today, so I googled it and found it’s referenced in quite a few blogs, so you may have already read it. That search then made me realize, I haven’t done a news entry lately, so here you go.

Autistic Maple Grove Boy Wins Battle for Treatment Coverage: a StarTribune article that’s inspiring to see as it’s a success story, but my first thought was “Why are we as a community still having to fight for this??”

Progress slow but sure in fight against autism: The Inquirer and Mirror writes a piece that makes me say “Really?” Where is this hope at the end of the tunnel? My son already has autism. We already get zip for help from any foundation or organization that all these funds raised go to, and because I work, we don’t qualify yet we can’t afford all the therapies out-of-pocket. I don’t want my son “cured.” I just want him happy and learn to regulate, and that won’t happen without services that the average person can’t get.

Missing Middletown Teen Reunites With His Family: Killingworth-Durham-Middlefield Patch article (whew, way too long of a name there). Feel good piece, as too often, these missing kids are found too late. SO nice to hear of a positive ending! For those who think Asperger’s and/or ‘high-functioning autism’ isn’t so bad, ahem, it’s still autism. Speech doesn’t necessarily cure much.

Autism Makes Multi-Tasking Difficult: ThirdAge.com article. To whoever did that research and came up with earth-shattering news? Thanks, Captain Obvious.

That’s it for today. IEP now set for next Tuesday…can we make it the remaining 3 days??

Tags: asd, aspergers, Autism, autistic, health, high functioning autism, news, parent, parenting, science

School and Autism

I opened up my blog page, thought about the title, and then realized, why am I thinking on this? I’m definitely over-thinking this. So I decided to cut to the chase: this entry is about school and autism. Voila, the name of the entry.

First, the disclaimer: I’m tired and lacking creativity.

I slept well last night. Went to bed at 11:30 after watching the two-hour finale of Masterchef (yay for Jennifer!) and I passed out as soon as the TV was off, but 5:30am comes early. My mornings consist of getting BB ready for school, signing in to work, working, taking him to school, and working until I pick him up. Then I work another 30-45 minutes or so. I’m used to that, but when you’re dealing with your school every single day, and dealing with your child venting about school the rest of the time, it’s tiring. It sucks your creativity like a Dyson picks up dog hair. Sorry, BB’s service lab sheds like you wouldn’t believe so it’s an analogy all too in-my-face.

Moving on…these last couple of weeks have been the proverbial rollercoaster. We have a great day and things look good. The next day blows big chunks and he doesn’t ever want to go again, once the anxiety-induced migraine goes away and he’s willing to talk as opposed to crying and yelling. Fun stuff.

IEPs are good things to have. Nice handy legal documents that explain how things should work and give people guidelines. But much like a restraining order and a persistent abusive ex, it’s only a piece of paper that totally depends on people to follow it.

One teacher/administrator who doesn’t feel the accommodations are right, doesn’t want to do the accommodations, or just has assumptions about your child and the diagnosis can blow the whole thing.

Long story short, that’s where we are right now. We’ve got a wonderful team around us, albeit a busy one, and we have one person in particular who gets BB. And one person who doesn’t…and doesn’t seem like she wants to.

BB is burned out. I’m burned out. Dh is burned out. We’re at the crossroads of: This is Your Last Chance to Make it Work Road and Homeschooling Highway. Not a place I wanted to be but then again, I never wanted to be a part of the autism club either.

BB is happy tonight. He is positive towards tomorrow, so I will be, too. It can be a hard thing to tell yourself: think positive, don’t let the last two weeks of hassles get you down, shrug it off and have faith. But I’m trying. Trying hard, and letting BB lead the way. He teaches me more than anyone I’ve ever known.

Tags: ADHD, asd, aspergers, Autism, autistic, health, high functioning autism, IEP, parent, parenting, school

Social Skills at Play

BB has a new friend. Well, not entirely new — they met each other a year ago in organized sports we’d signed him up for and they’ve seen each other at school here and there, but it has ramped up a lot in the last few weeks as they’ve seen each other for various events, mainly BB’s friend taking him somewhere. Today, we invited his friend over to spend the day, and wow, is it better than Disneyland and the zoo and a computer game store all wrapped into one.

BB has some social skills. Now, that doesn’t mean they’re good social skills, but he’s trying. He plays well for a while, taking the lead, and when he doesn’t get his way anymore or he’s just overwhelmed, he heads back inside to play on his computer. Alone. He wants to have his friend, so after I remind him that leaving him alone out back won’t generate return visits, he heads back out. After a sigh. But I think I made a dent.

His friend is being picked up any minute now, and it’s probably just about time. BB’s mood is wearing thin, the kind of thin where we almost are at a loss and don’t mind if he finds that spending some time in front of his tv watching his DVR’d episodes of Dragon Ball Z and Pokemon is what he wants to do next…for an hour or so. It’s the kind of thin where we’re afraid he’ll offend someone by his impatience or he’ll be rude under the guise of being ‘honest.’ Still working on that one.

Our next step is probably Cognitive Behavioral Therapy, in addition to more advanced social skills training and behavioral therapy at school. And for me? Other parents to talk to, those who can understand what we deal with daily and talk to me without judgment. Oh boy, do I need that…

Monday’s looming large now, and with that comes an early morning. 6am rise and shine and at school by 7:15 in time for his new ‘job’ helping the school on a special project. Just like any parent of a school-aged child, there’s the regular routine, and there’s the feeling of not looking forward to the next five days of rushed mornings, packing lunches, signing notebooks and listening to him vent the entire ride home each day about every.little.thing that occurred. (Who needs a tape recorder when you have BB? I get the perfect play-by-play minus the video, except his explanation is pretty detailed and I can usually envision his stories.) It’s only 6:22pm and I’m already tired just thinking of it. Or maybe that’s just the twitch in my right eye coming back.

As our kids grow, in some ways things improve. In some ways, things get worse. When I can’t hold him and restrain him enough at 75 pounds, what happens at 85? Years ago, I went to a parent support group not long after BB was diagnosed. What I expected was everyone talking about their experiences and people nodding and then going on to the next person. What I needed was being able to hear other moms of kids BB’s age talk about their situations and confirm we weren’t on our own or that we weren’t the only ones who had to make nothing but dairy-free pancakes cut in perfect squares with 3.5 tbsp of maple syrup in order to prevent a pre-school meltdown. What I got was a room full of people all dealing with spectrum kids from severe to mild, sharing their stories while others commiserated, laughed or gave advice. Sounds great, right? It was, until we got 1/4 of the way around the room and reached the parents with kids in high school. Their stories were scary. I was so busy getting through one day at a time that the future hadn’t occurred to me, so when I heard more and more parents talk about how things were just getting worse, how their child wouldn’t get into the car for school (or get out when they did manage to cajole him into getting in) or how their child yelled and they had to call the police to stop a rage, I was devastated. The cookie I ate was boiling in my acidic stomach as my eye twitched a little faster. I think I stopped breathing for a several seconds too long, and I wanted to run to the bathroom, the foyer, the car, anything to get away, except I was in one of the seats that allowed for no escape without disruption. So I sucked it up and let my mind boggle and ‘go there’ while I listened and realized that it was all just beginning.

So many things are better since that day. I have a boy that’s often indistinguishable from his peers for a while, unless you look close, and he’s no longer hurting himself…often. But that doesn’t mean I don’t worry about the future. I know the mantra is to not worry beyond today, as each day brings its own worries, and to let go and let God, but that’s a work in progress. I too am a lot better since that day, but I’m still Mom, and I still have to remind myself that worrying doesn’t help, action does. Each day, more action to attain more improvement, and the end goal? Happiness for BB. And not just on days we visit Disneyland with the coveted passes I’ll be buying within the week we move back, but all days.

Tags: ABA, ADHD, Autism, autistic, CBT, cognitive behavioral therapy, disneyland, meltdown, social skills, tantrum, temper, therapy

My Son Has a Disability

Sometimes, when things are good, we can go days without really thinking about it. The word “autism” doesn’t even enter my head on a level where I have to focus on it, because so many days, that’s just how BB is. I don’t see him as autistic or see his odd behaviors or problems as autism, it’s just BB. But some days, it hits you. Bam, the kick in the stomach that reminds you: my son has a disability.

Autism.

It hits you hard and you almost have to remind yourself to take a breath, because you hadn’t thought about it that way in a while. Maybe it’s just me – maybe I compartmentalize and some might say that’s a bad thing. Some might say “Well, how bad can he be if you are able to forget,” so let me clarify — it’s not that I forget, it’s just that I see him as his own person, just the way he is, and I’m so used to his eccentricities, his sensory problems, his OCD behaviors and the meltdowns that I don’t focus on him being a child with autism. I just see him as a child who needs my love and attention in some different ways.

Yesterday was one of those days. On the heels of last week, when BB refused to go into the school in the morning, and he was a stressed, anxiety-ridden little boy who visibly shook when we mentioned school over the weekend, I didn’t figure yesterday morning would go easily, but I also didn’t expect it to go like it did.

Long story as short as possible, we went to school, with the homework the assistant principal had given him, basically a list of all the things that bothered him, things he wanted to discuss and have fixed. It was a well-written list, big words, proper grammar and spelling, but it still wasn’t pretty. He was candid, almost brutal, in his explanation. He doesn’t like it when someone touches him unasked, so he didn’t hesitate to name names of those who didn’t abide by this rule. (But I have to say, if you have a child with autism in your class, you should also know enough to not just touch them unbidden, so I didn’t feel sorry for those whose names were listed. If you haven’t taken time to learn about autism, knowing you have a child with it in your class, you aren’t being fair to yourself or the student.)

BB handed the list to the AP, and turns to head back to the car. Uhm, no, baby, you have to go into the building. All heck broke loose from there. Reminding him, as quietly as possible, that he wants to be seen like everyone else, so falling to the ground and trying to run away will make him stand out didn’t work. Four staff/administrators later, we were still there. Cars had all gone, and this was when it was a blessing that I have no friends here and neither does he. (Small towns? Not always friendly to newcomers beyond the hello, how are you. And if you’re different? The stares and actual “wow, I’ve never seen someone like you before” comments abound. My daughter’s blue streaks in her hair for Autism Awareness month? Mouths would drop open.) Because of our lack of attachment to anyone here, we were just another group of people on the sidewalk thankfully.

However, when we were still there 45 minutes later, BB in the car after us having given up, my stomach was in knots. My left arm had no feeling, as I’d used it mostly to hold him to me rather than running away. The AP doesn’t believe in dragging children into class, nor do I. If he’s going to be miserable outside, what happens inside? Is it fair to him, and if it escalates, we put him into the position where he could get even more in trouble. So back to the car he went.

This afternoon, we have an emergency IEP. Plans for what to do to make him willing to at least go to school for a modified schedule, for social purposes mainly, will be formulated. We’ll be discussing things that will motivate him to go into school, even if it’s computer-based projects or helping someone out. Then we need to work on friends. How to get him to make friends without the adult intrusion he doesn’t want?

Then we get to discuss ABA and social skills services. We aren’t signing anything that doesn’t include both in writing. Now that they’ve seen the good, the bad, and the ugly, they are aware that a lot goes on behind the surface. They realize that while he may look ‘normal’ quite often, there’s a whole new world in his brain. His thoughts and feelings aren’t obvious, but they matter, and we have to not only help him adapt, but we need to teach him to adapt, and make some adaptations for him as well. Medication is a consideration, but if the problem is mostly happening at school, I’m hesitant to biochemically change his behaviors and/or personality when there’s other options to approach first.

Think happy thoughts for us. Not only is our house not sold yet — four weeks and not one showing — which makes me discouraged and sad, being stuck in a place where we have no friends and don’t want to live anymore (for new readers, we’ve only lived here about 14 mths and we have no close family here either) but now our son is showing signs of major regression and I’m just seconds away from developing a tic again in my eye. It’s not about me, and I don’t want to make it about me, but we could really use a break. BB needs help, and he needs love and acceptance. We can shower him with love, but I can’t buy him the acceptance and the help relies on others.

I hate saying “my son has a disability” but yesterday’s issues really drove it home. Whatever else is going on in our life (such as planning a move that we’d hoped to still make this year) can’t be the focus. BB has to be the focus. Kind of a kick in the pants, and maybe we needed it.

Tags: ABA, ADHD, aspergers, Autism, autistic, headaches, health, IEP, meltdown, migraines, parenting, school, social skills, tantrum, teacher, temper, therapy

Headaches: Caused by Anxiety?

It’s day 4, and we almost didn’t make it to school this morning. After yesterday’s headache, he was ‘off’ all night. Edgy, easily irritated and seemed unable to focus on one thing for too long. At bed time, we had a major meltdown on our hands. Apparently his service dog hasn’t slept well the last two nights and it’s keeping BB up at night. I knew about this, but I didn’t know it was to the point of near hysteria that he’d have a third night like this and keep BB up again. After 15 minutes of him yelling and crying, hitting himself and us having to stop him and try to talk him down, he decided to listen to some of our suggestions for keeping his dog happy at night, thereby allowing him to sleep.

It took a while, but with some furniture rearranging, we moved the carpet over to one side and angled BB’s bed so that the service doing, who we’ll call “C,” was only able to roam one side of the room, and with the carpet there, BB wouldn’t be able to hear his nails on the hardwood floor. C’s bed was over there, and BB could still be near him without the noise. We then watched Dragon Ball Z Kai together (not the world’s best show, but he loves it) and he went to sleep, 30 minutes later than normal, but it was barely dark out. He insists on being in bed no later than 8:30, some nights as early as 8:20, so I was worried this would upset his sleeping pattern but he seemed fine.

Fast forward to 6:15am, when I wake him for school, and I hear him moaning as I walk down the hall. He said he’d woken up about 30 minutes prior with a ‘super bad’ headache. I get him a pain reliever immediately, massage his head, offer him water, and do all I can to get him to be willing to go to school. That’s where I felt like a really bad mom, because I don’t want to leave my bed when I have a migraine, yet the schools out here have the world’s most ridiculous policy for attendance. It doesn’t conform with the state’s policy, so we’ve pushed it a bit as the state allows for 10 days of unexcused absences, and four that you have a doctor’s note for, which is fair — I really do believe kids need to get to school and it’s important to make rules — but what’s not fair is that our school starts threatening truancy at day four and makes you attend an attendance meeting. You quote disability laws and they state that we have to have a document on file. Uhm, I think the IEP and medical diagnosis of autism and migraines should suffice, yes? But no, we have to have a note each year on file and even then, they want to make sure we’re ‘being truthful’ and not taking advantage of that. So you end up taking your child to a doctor for a mild cold that’s given them a temp of 100, not enough for a doctor to do anything more than write a note that you were there and enough for you to pay the bill and expose your child and yourself to even worse illnesses.

I digress.

I finally got him up and moving this morning and got him out the door..a few minutes late and with him being oh so slow that it was really hard not pushing him to move faster. After all, tardies count against the 10! We have to weigh the balance between being a mom not making your sick child go somewhere that he’ll only be in pain, and the school hassling you. I partially think it’s the area — we’re ex-homeschoolers and we believe that while schools are important, they’re run by humans and parents have the utmost choice, and people locally tend to believe what school staff says without question. I also think that I’m just burned out on years of expectations that are unfair. He’s sick, he shouldn’t be at school where it’s only going to make him worse. If school is making him this anxious, it’s not up to me to just continuing to increase his medication, but to them to find out what they can do to decrease the anxiety.

So I sit and wait for them to call and give me an update. I’ve already spoken with the nurse first thing, but it’s up to the teacher to let him go to the office if his head hurts, and if she doesn’t let him..well, I’ll be there in the office first thing, but that won’t fix the day for him. For him, when he has a problem with something once, he’s put off from ever trying it again. Let’s just say that the day that It’s a Small World at Disneyland broke and we were ‘trapped’ for 15 minutes, five years ago, assured that we’ll never ride it again. I liked that ride.

For those of you dealing with anxiety, what do you do? BB’s headaches were far less frequent over the summer, in the environment without bright lights, too much noise and stress. Now that he’s back at school, we can see him getting stressed and anxious, and we feel the headaches are a side-effect. We want to try something to help — biomedical is the first goal, followed by medication but only if absolutely necessary. How do you handle autism and anxiety? Where do you see it cause the most problems?

Tags: ADHD, anxiety, anxious, aspergers, Autism, autistic, headache, health, IEP, meltdown, migraine, pain, parent, parenting, school, science, tantrum

The Invisible Kids with Autism

Yesterday, my husband talked to someone who said “Oh, and tell <our daughter> hi from us!”

Last week, someone said “And how’s <our daughter> doing? And xxx and xxx?” (XXX would be our older kids.)

Family isn’t immune — “Can <our daughter> come to the beach with us?”

We answer their sentence, then say “And BB is doing great…” I sometimes add “Thanks for asking!”

Apparently it’s not an acceptable answer — I’m supposed to just ignore the fact that they ignore him. My “Thanks for asking” comment is usually met with silence.

It’s like autism makes my son the invisible boy until we bring him up.

I realize that sometimes people don’t know what to say. You want to be careful not to say the wrong thing, so you opt not to say anything. But if you recognize yourself as doing this — I think we all have situations where we are at a loss for words — at least say “How’s <BB> doing?” You don’t have to specify, you just need to ask how he/she is doing. It means everything to us when our child is seen as just as good as everyone else’s child. Because he is. We all like to think our kids are the cutest, the sweetest, the smartest, the best..problem is, we all think that way, and a smart parent will realize that.

Autism doesn’t mean my son is dumb. In fact, quite the contrary, he’s incredibly gifted and working at an academic level years beyond his age.

Autism doesn’t mean my son is unaware of what’s going on around him. He’s surprisingly adept at listening to conversations while still focusing on writing HTML for a game he’s designing. He can hear a song once, while playing a game, and repeat it note for note, word for word, weeks later, without ever hearing it again.

Autism doesn’t mean my son is unable to do something outside of his scope of interest. Just like any other child, he’s got a lot of abilities but chooses what he wants to do. In fact, he’s probably more in tune with his interests and abilities than people without autism.

Autism doesn’t affect his hearing. He can still hear you when you let your child get away with calling him a name or when you whisper “It’s okay, go do your thing, BB will be fine on his own.” Again.

Autism doesn’t render him incapable of comprehending your speech. He knows what your words mean. He knows what it means when you say “I’m not going to keep coming to visit you if you don’t hug me.”

(Something I want to point out: that won’t make BB or any other child with autism want to hug you.)

Just because you don’t understand a child with autism or you don’t want to understand a child with autism doesn’t give you the right to be mean. Because that’s what it is: being mean. Ignoring a child for behavior he can’t control is like refusing to help push a wheelchair uphill when the person is a paraplegic, and who would do that?

Next time you deal with a family with a child with autism, ask about the child. Even if you have to fake it, ask. And if you have to fake it, maybe it’s time to re-examine why you feel that way — why does it bug you so much to acknowledge that this family is dealing with a child with special needs? Do you have to agree with everything someone does to like them? No, so why is a child with autism-related behaviors any different? Maybe it’s time to stop letting your personal feelings get in the way and just be the friend, the Godmother, the cousin, the aunt, the grandfather. That means loving the child for whomever he is and overlooking the rest, even if you don’t agree with the way the mom and dad parent him. Love him and respect him, just like you would any other child.

It really is that simple.

Tags: ADHD, aspergers, Autism, autistic, family, Friends, school