April 2010

Where Am I?

by Mary on April 19, 2010

Why is it so hot? Why am I in this handbasket?!

The J-man has been on Spring Break for three weeks now, with one to go. It has been, for the most part, wretched. There has been so much crankiness in our house that I’m surprised it hasn’t split at the seams already. Maybe by this weekend!

Never before have we seen exactly how much he craves the routine of school. The sensory overload of, well, everything he sees, touches, eats, or hears has boggled my mind. I watch him struggle, and watch us struggle with him, and I feel overwhelmed. Tim feels overwhelmed. Dale Jr is still going with the flow, although he will occasionally look over at his big brother like, “Dude. Calm down!” The J-man, whose bedtime and morning routines have been stable for months, has suddenly needed to be dragged (literally) to the bathroom for teeth-brushing and shower, dragged back to his room for clothes, forced into his clothes… and then at night, carried/forced into taking meds and having teeth brushed, manhandled into pajamas… He bit me the other day on the finger so hard that I still have a blood blister 2 days later. He went a couple weeks where he ate nuggets so rarely we were concerned about his protein intake, but thankfully that seems to have subsided. No amount of brushing/joint compressions/smushing has seemed to help.

Of course, none of this is helped by the extended family’s illnesses/surgeries/dramas going on, and the fact that both Tim and I have been absolutely covered up in work. I’m leading a project right now, and I haven’t done that in a long time. Tim is frantically working to meet a deadline, but he can only get so much work in per day, because of having to be with the boys all the time. The house is a wreck, and we don’t have the energy to fix it, but because the house is a wreck, we feel even more stressed.

Tim and I talked last night in bed, and I told him something I had read recently on a blog. Someone said, “Nobody is coming to save you.” They were talking in terms of money, but also in terms of regular life.

I realized that lately, I’ve been reading fiction where there is ALWAYS someone there to “save” the main character. There is always some distant relative you’ve never met who dies (but because you never met, you don’t feel too bad) and leaves you a house, or a huge amount of money. Something relatively small that you were left by your elderly godfather is actually a rare item worth $80K. Or, suddenly a nanny appears who is able to care for your children AND clean the entire house with one hand tied behind her back, and you can afford her full-time. (We actually have someone who comes in for a few hours every couple of weeks, and we LOVE her. But we need more than a few hours!) Somehow, you stop eating because of stress, and look down at yourself and have magically lost 4 dress sizes.

I realized that I have been behaving like somebody was coming to save me. It’s not going to happen. I need to start acting like that.

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The story of Nadia Bloom’s disappearance and rescue in Florida has made every parent with an autistic child experience something between nervousness and mortal fear. Any one of us knows our child could be in that story.

While our J-Man has not been what you’d call a ‘flight risk’ yet, that could easily change. Our biggest fear right now is that something will happen – like we’re in a car accident – and because he’s barely verbal, he will have no way to communicate with emergency personnel nor understand what they are telling him. Just about any parent with an autistic child has nightmares where our child is in danger and we are powerless to help them.

But what we can do right now is try to prepare as best we can to reduce the chances of harm coming to our children. We might not be able to predict every possible scenario, but we can act to greatly lower the chances of our children ending up in dangerous or life-threatening situations where we cannot help them. I’m sure we all feel a lot of anxiety even thinking about this, but as natural as that is, we can’t let our emotions get in the way of our children’s safety.

I don’t know the first thing about what Nadia’s family did with regard to preparing for possible emergency situations. So this is no commentary on them at all. The ideas below include those that came out of a session we had at school with a local police officer about safety and autistic children, other suggestions I’ve read about, or things we’ve tried ourselves.

[Standard disclaimery stuff - I'm not an expert in this at all. I'm compiling and relaying ideas that I've either learned from others or thought about myself, but whether they are appropriate for your family is up to you to decide. You have to set up a system that best fits your family and that offers you the most safety and security. When in doubt, ask your local autism support organizations, police department, emergency responders, teachers, and of course, other parents.]

Know the signs

Your best defense against something terrible happening is to notice patterns in your child’s behavior that may indicate that they are about to try to escape or otherwise take off in a way that could put them in serious danger, such as running off a sidewalk into a street.

This can be very difficult as often we aren’t sure what is going to bring this about in them or what to do to head it off. Try to keep notes about what’s going on each time your child tries to get away from you. Look for patterns. This is largely about data collection, pattern recognition, and using your parental instincts. If signs indicate that they may be getting to where they feel the need to escape, that’s when you act to preempt it as best you can.

Noticing any strong interests, especially ones that get more intense, may help in knowing when and where they may wander off to fulfill those interests.

No matter what, get a medical alert bracelet

Everyone who has experience with autistic children in potentially dangerous situations has told me the same thing – get a medical alert bracelet. We have put this off too long in our house because we thought he’d never wear it without an all-out battle. I know we’re not the only ones to have this excuse. I’ve talked to a few people in recent weeks who thought the same thing, got the bracelet anyway, and after some initial resistance, it’s now an accepted part of their daily life. The good ones are very sturdy and nearly impossible to take off if fitted correctly.

The officer who met with us at school said that if you do anything at all, get a medical alert bracelet first. She recommended having the child’s name, date of birth, phone number(s), and their diagnosis (or diagnoses) printed on the bracelet. She has an autistic son herself, and she said that while it’s very hard at first to get your child used to it, endure it and deal with it as best you can, but get it on them. It saves lives.

Bracelets are available at a multitude of places online in every material and style you can think of. Some also provide the service for an additional fee – like MedicAlert – of having a number an emergency responder can call to get your child’s medical information, etc. Make sure the place is reputable before you buy anything.

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[Urgent Update! The deadline to submit comments about Sensory Processing Disorder (SPD) for the DSM-V is Tuesday, April 20, 2010. If you haven't yet done so, please send your comments very soon! This is not only critically important for autistic children and adults but for all people who struggle with sensory challenges. Make this part of how you observe Autism Awareness Month. See below for the background information I posted last month on this issue and how you can submit your comments to the right place.]

I’ve said in the past that Sensory Processing Disorder (SPD) – sometimes also referred to as Sensory Integration Disorder – had little or no chance of making it into the upcoming DSM-V. (DSM = Diagnostic and Statistical Manual of Mental Disorders; V = 5th Edition) Turns out, I’m wrong, and I’m not sure when I was last this pleased about being wrong. We have an opportunity we won’t get for almost another generation, so get ready to act.

In short, the DSM is where standard, accepted diagnoses for a huge range of conditions come from. It is the bible for most everything we deal with medically as parents of autistic children. The DSM is one place – and for autism the place – where those five-digit codes (aka ICD-9 codes, e.g., 123.45) you might see on medical forms and reports come from, and it’s the manual that governs our lives with autism more than any other in the health care system. More importantly, this is how things get billed to your insurance, recorded in all sorts of forms as your children are evaluated and treated, or otherwise processed in the realm of health care. Essentially, without one of these codes, it doesn’t exist.

Because SPD isn’t in the current DSM (4th Edition), for all intents and purposes, it doesn’t exist. Of course, all of us with sensory kids know better, but your insurance provider doesn’t care. If you’ve been getting sensory-oriented occupational therapy paid for by insurance in the U.S., your therapy provider has most likely been creatively coding it to get it paid for.

If you’re like us, it’s been billed as more general occupational therapy, of which we get 30 visits a year. Once that runs out, tough. Pull out your wallets. OT limits set by insurers often assume a temporary condition, which obviously does not apply to autism, sensory processing issues, or most anything else we deal with. This makes a 30-visit annual limit profane. And that’s why this is so important.

The SPD Foundation has done an amazing job getting everything organized so you can know exactly how to make your voice heard and how we can all work together to get SPD in the new DSM. The American Psychiatric Association (authors of the DSM) is now accepting public comments on SPD, so this is the time to act. The more data and stories they collect about children and families living with and trying to overcome the challenges of Sensory Processing Disorder, the more likely they will be to include SPD and do so in a way that will benefit our children and millions more.

Here are the links:

Please read these pages carefully before you go and submit your comment to the DSM publishers, particularly the tutorial on how to prepare your comments. For example, don’t talk about insurance benefits; even though that’s critical to us, the DSM authors are there to create standards for medical diagnosis and not wrestle with the nightmares of health insurance.

And remember, the public comment period allows everyone, not just parents, to submit something. Parents, adults and adolescents with SPD, physicians, psychologists, occupational therapists, teachers, researchers, and anyone else who works with or diagnoses persons with SPD can comment. So share this call to action with all those people you know.

The DSM is only revised about every 15 years. That’s not a typo. So we won’t get another chance at this until probably the late 2020s. This is a defining moment for autism and all children with Sensory Processing Disorder, whether they are autistic or not. Go tell your story, and let’s make this happen.

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Be Aware – For Parents

by Tim on April 2, 2010

[This is Part III of today's three-part series, along with Be Aware - For Family and Friends and Be Aware - For Everyone, for World Autism Awareness Day.]

Be aware that you are not alone. Be aware that there are entire communities of us – locally, online, everywhere – joining together for solidarity, support, and advocacy.

Be aware that we’ve got each other’s backs.

Be aware that not only is grief a normal part of this, it is required. Give yourself permission to go through it.

Be aware that your child is the same precious soul as the newborn baby you once held.

Be aware that some days you’ll feel like you can’t do it, but you will.

Be aware that we’re now free from being average, and are instead free to kick butt.

Be aware that autism allows amazing gifts to be expressed that otherwise would not be.

Be aware that your child will achieve something after trying so hard for so long, and you’ll feel like you all won the World Series. Be aware that this will happen regularly, and often when you least expect it.

Be aware that some days you will float on air and feel like anything is possible.

Be aware that often it is also a desperate marathon. It can feel like 26.2 miles over and over again, and you’re wearing six layers of drenched corduroy, while carrying a dump truck on your back.

Be aware that you only have to go one step at a time.

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Be Aware – For Families and Friends

by Tim on April 2, 2010

[This is Part II of today's three-part series, along with Be Aware - For Parents and Be Aware - For Everyone, for World Autism Awareness Day.]

Be aware that you don’t need to tell us that everything will be OK; just tell us that you’ll be there for us.

Be aware that being a supportive family member or friend will mean doing a lot. You have to read and listen and work at learning and gaining experience.

Be aware that we do the research, the work, and the living it all day every day; we know the effort it requires, and honestly it will be impossible for you to compete with that. That’s OK; no one expects you to. Be aware that it’s not how much you absorb but how much you want to help and support us that matters most.

Be aware that we are thankful beyond words for all that you do for us.

Be aware that we often feel wounded by many kinds of criticism. Treat our perspectives and feelings with respect and seek to work as partners with us.

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Be Aware – For Everyone

by Tim on April 2, 2010

[This is Part I of today's three-part series, along with Be Aware - For Parents and Be Aware - For Family and Friends, for World Autism Awareness Day.]

Be aware that if you’ve met one autistic person, you’ve met one autistic person.

Be aware that just because people don’t talk doesn’t mean they can’t communicate. And it certainly doesn’t mean they aren’t intelligent.

Be aware that sometimes our kids can’t help it. They are trying, incredibly hard.

Be aware that an open mind and a closed mouth are sometimes the best response to a situation.

Be aware that our sons and daughters are awesome. Be aware that we will kick the butts of anyone who says otherwise.

Be aware that many public figures and organizations talking about autism don’t necessarily speak for a whole lot of us. Be aware that a lot of the people who talk the most also have the biggest agendas and the most to profit from.

Be aware that if a parent is trying to do something with a child who is melting down in public, pause a minute, postpone judgment, and reflect on whether that child and parent are facing challenges you do not understand.

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A Prayer of St. Francis for Autism

April 1, 2010

It’s April, so welcome to Autism Awareness Month! I wanted to start things off by coming up with something that would set the tone for the month, and I decided that if I was going to do that, I might as well do something completely different. There’s a prayer attributed to St. Francis of Assisi […]

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