Autism Watch: 2007

Archive for the ‘Therapies’ Category

Lately I shared with you how much I enjoyed the new book, The Autism Revolution, by Dr. Martha Herbert. This book is truly a whole-body approach on helping your child, in layman’s terms, with resources and realistic recommendations. If I had my way, every doctor, therapist or teacher would read this and use it to help their patients and parents. It is *that* good.

Courtesy of Harvard Health Publications and Dr. Martha Herbert, I have two copies of it to give away!

To win the book giveaway, you can do one (or more!) of the following three things — each thing counts as one entry, max of 3 per person.

1) Respond to this entry with a brief answer to the following question: what area are you working on with your child? (Such as: anger issues, verbal skills, potty-training, eating problems, stomach pain, behavioral, etc…)

2) Follow me on Twitter (@autismwatch2007) and come back and respond here to let me know your Twitter name and that you’re following me.

3) Follow my blog and post to let me know that you did!

Thanks for playing! 😉  (And this book is so worth the time it takes to enter!)

I’ll close out this giveaway on  Sunday, May 20 at 9pm EST and randomly choose two winners. I’ll then email you for your mailing info, so keep an eye on your mail. (I’ll also announce the winners here!)

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.

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.

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.


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