Alexa's Resource Sheet

A note from Michelle: This was created by Alexa for a family member who lives in Pennsylvania and is new to the Spectrum, so read with that in mind (particularly the PA-based resources at the end).

First, a quick glossary:

Neurodiverse, Neurodivergent - Basically, anyone whose brain chemistry differs from the "typical" setup - autism, learning disabilities like ADHD or dyslexia, anxiety disorders, mental illnesses, pretty much anything that means your brain works and you perceive the world differently from the way society expects you to.

Neurotypical - People who are not neurodivergent. Basically, brains that function more or less the way society expects them to.

Types of Service(s) and Providers That You May Need:

• Occupational therapist - These help with things like motor control (handwriting, holding utensils, sitting up and walking without falling down, hand/eye coordination) and sensory integration therapy. You will almost certainly need the latter. (While not all people with sensory processing disorder are autistic, something like 90% of autistic people have sensory processing issues.) It's a bit like Physical Therapy for people who have suffered injuries, but in my experience OT generally focuses on core muscle strength, but also on building up skills that aren't there, and it does so in a way that the kid finds fun rather than work. For instance, practice using zippers or buttons or tying knots with a toy designed so that you have things to button, or improving coordination by threading string into fun shapes. It can also provide an outlet for sensory needs you can't fulfill normally - the one I went to for years had a zipline set up that a lot of kids liked to fall from or crash into soft blocks at the end, and a sort of hammock made of very clingy lycra that I liked sitting in. 
• Speech/Language Pathologist - focus on social skills groups (particularly ones that give you an outlet to meet other autistic and neurodivergent kids that can interact with each other) and for AAC Augmentive and Alternative Communication.
• For the former, make sure that it's a group that involves the kids interacting with each other and doing things they actually like. Something that encourages them to talk to each other and try and play together, but will let them play how they like beyond that. (For instance, my one social group would give us a choice of board and card games, and we'd split into groups of whatever sounded more interesting, but a few of us also brought video games and were allowed to play them together and talk about that as well.)
• For the latter, making words and arranging them in ways that make sense is hard, and being able to make sense of how people are talking to you and attaching meaning to them can also be difficult. It could be the child needs help with that, so helping him get that or finding a way to communicate if he can't really get spoken words to make sense is probably a good idea. (For instance, while I'm fine with talking, I have an easier time writing, especially when I need to collect my thoughts for something long and important. The ability to erase and edit as I go is a major benefit. My brother, on the other hand, is completely comfortable speaking but has trouble arranging his thoughts into writing because he's so stream-of-conscious. Communication methods are different for everyone, so finding what works best is a good idea.)
• Psychologist - Not a given, but kids are not always kind to kids who are different and not being able to understand all the rules of the world around you that everyone else seems to just get causes some serious internalized issues. (Hi, my social anxiety) You're looking for someone who's good with kids and finding ways to help them that make the kid feel more at ease.
• An Advocate - someone who will help you during IEP meetings to figure out what your kids need in this specific case and how to be allowed to use it so that they can actually learn. This is a must, because you do not know the county's education system code and how it relates to disabled students. They do. As a given, the things I'm going to suggest in the school section are things you are allowed to ask for and the school is supposed to give you as accommodations. If it's something like a keyboard to write on, the school has these resources already and is supposed to provide them for you. Your advocate knows these things and will help get the school to provide them for you.
• In School Services - the public school system is pretty much the opposite of sensory-friendly, is the thing. You're having to hear the teacher talk, people talking around you, the air conditioner or heating running, the overhead projector, the scratch of writing with a pencil or click of typing on a keyboard, and sometimes things like the class next door or people opening lockers in the hallway, and it is hard to focus on just one when all of these are overwhelming. Things like air freshener and markers and nail polish and glue and food all have smells, and these  can be extremely unpleasant to the point of making you physically ill. The lights flicker, there are things all over the walls and outside the windows and at the desk and on the whiteboard and the teacher and a lot of kids around you and they all attract attention. On top of that, having to sit in a hard plastic chair at a desk with your feet on the floor and sit up and look at the teacher (when making eye contact can be physically uncomfortable) and not fidget and do all this when you're uncomfortable from everything else and your clothes are scratchy all combines into this expectation of sitting still and "behaving appropriately" that can be near impossible to fulfill. Here are some coping mechanisms that your children might need to use:
• Being able to take a break somewhere quiet and calming (the library, for instance, or an office where they can turn out the lights) when overwhelmed
• Sensory relief while being in the classroom - I found having something to suck on helps me manage the noise levels, so I keep a bag of Jolly Ranchers on me at all times. (When my one-on-one aide discovered it, we would put the flavors I liked in a little ziploc or the pocket of a pencil case because I didn't use a purse, or she would have some in her pockets and I could ask for them.) Other things that work are fidget toys - things you can squeeze or tangle or rip so your hands are busy while you're focusing, because it's hard to just sit completely still. Everyone does things like them, but autistic people tend to do so more noticeably. You can find some at the counter of your average small toy store - things like little squares on a string to make shapes or a Rubic's cube or the like. There are also specially designed sensory toys and jewelry you can find online - for instance, my brother and I used to chew through shirt collars when upset, and there are little toys and necklaces designed to be chewed on that fill that need and not damage clothing. Because school isn't geared for this, you need an IEP to say "yes we need these things they are necessary to function in a learning environment."
• You may need a one-on-one aide to help cope with the class environment. (This particularly becomes a thing once classes split into levels - I needed mine because I could stand up to more challenging classwork and was bored with the special ed curriculum, but needed help to deal with being in class.)
•  Clothing: Will not be addressed in an IEP meeting unless your school requires a uniform, but do certain pieces of clothing make your kids uncomfortable? Certain fabrics? All clothing? Things with physical tags? If it's just fabric types or tags or the like, you can work with that on your own, but if it's all clothing or all of a certain type (say, shoes) you'll need to work with an OT for that. 

Other things you'll  need:

Doctors, teachers and therapists that will take you and your children seriously. It's not all in your head. It is not something you can just stop. It is not a tantrum seeking attention. If your child is having a meltdown, there is probably a reason for the meltdown and you need to identify what it is. If you're seeing a doctor and talking about symptoms, someone who will listen to what you two are saying and see what it is rather than declaring that it's clearly just a virus or in your head. (I exaggerate slightly. I am still bitter about certain awful doctor's appointments.)

http://realsocialskills.org/ 

A website for and by neurodiverse people, geared more towards adults and teens seeking help but the resources and advice there can be helpful.

http://amazingadventuresautism.blogspot.com.au/2015/05/barriers-to-learning-for-autistic.html

The blog is Australian, so some of the resources will probably be region-specific, but the "if you are a newly-diagnosed parent" page will give you some really good links for explaining things from autistic people's perspectives and this set of images PERFECTLY summed up why elementary school is so difficult and how to help.

http://www.keystonehumanservices.org/autism-services/serviceProviders/

I got good vibes from that website in general, but most of their services are geared toward adults. This, on the other hand, is a way to find providers in your county who presumably have experience working with autistic people. This includes specialized stuff like OT, but also general services like dentists. Believe me, you will need a very understanding dentist. (My gag reflex got me thrown out of several dentist's office. It's a type of healthcare that by its very nature includes bright lights shining in your face, weird scary-looking metal objects going in your mouth that you have to not start retching over, and sometimes very loud noises. You need someone who will understand this fact and explain calmly to your child why they are doing all these incredibly unpleasant things, and that it is not just because they enjoy torturing people, and be sympathetic to them if they're freaking out.)

Autism Acceptance Month

We are almost at the end of April. Another "Autism Awareness" month come and gone. Except this year, it has been different for me, because of what Alexa has taught me. The thing is, people don't need to be more aware of autism - it is everywhere now - people need to learn to get beyond their expectations and start to accept some neurodiversity. Let me put that differently - many people with autism aren't being given the opportunity or voice they deserve because we aren't willing to look beyond what we see as odd behavior long enough to hear what they have to say. And that needs to stop.

We have always hoped Alexa would become her own advocate, would speak out for what she needs and believes. Over the last several years I have seen a lot of conversation around the difference between seeing autism as a disease to be cured and a disability to be accommodated. The first characterization implies the eradicating the scourge. The second implies a situation that may not be ideal but that can be dealt with. Over the past month, Alexa has done more to advocate for the latter than I could ever have imagined. Of course, we have always come out in favor of the latter, but this year Alexa put words to the feelings I haven't been able to express. Eradicating autism would eradicate our amazing daughter. Autism is central to who she is, it is the lens through which she views the world, and it shapes her interactions.

That said, I would like her life to be just a little easier. It would be nice for her to be able to volunteer at the local library without judgment about her ability to do the job. It would be great for her to not have to justify reading a book or playing with a gameboy at a restaurant, when she's just trying to cope. It would be awesome for the world to realize that autism looks different in different people and at different stages of development, but that doesn't mean it is any less impactful or difficult for those involved.  And guess what - all sorts of people have autism - adults with autism aren't all super rich nerdy computer guys - it would be great for the world to accept the humanities geeks too ;-)

Alexa is about to graduate with a bachelors degree, and just like the rest of her peers she worries about finding a job. Imagine embarking on that terrifying adventure knowing that the world isn't friendly to the way your brain functions. Yeah, I can't either. So maybe the world could make it just a little easier by offering some acceptance, not just awareness.

The "Autism Stick" (aka "Don't get too Cocky")

Several years ago, as I was regaling Alexa's advocate with the story of some misadventure that came out of no where, when she was seemingly doing so well otherwise, the advocate said, "Oh, you got hit with the Autism Stick," and chuckled. The Autism Stick smacks you upside the head when things seem to be going well, catching you off guard. It's what happens when you get complacent, stray away from proven strategies, or just plain forget that things won't happen on a typical schedule and pattern for your person with autism. It reminds you that autism isn't something your child grows out of, it doesn't magically disappear - it takes sustained effort and coordination plus a lot of determination and courage on the part of your child/adult with autism.

Suffice it to say, we have been beaten and battered by the Autism Stick this year. I am certain that the winter craziness with cancelled classes, appointments, and support sessions due to snow did not help. But whatever the root cause, it's been painfully clear that Alexa continues to be a person with autism, and that we didn't have all of the stars and supports aligning appropriately.

Today, we had a positive appointment with the members of Team Alexa here on the west side of the Chesapeake (as opposed to the A Team on Maryland's Eastern Shore). We have steps to take, options to try. As we were driving out of the parking lot, Alexa and I were commenting on how thankful we were to have the resources we have - the therapists and doctors, the emotional supports, the insurance, and not least of all the financial resources to pay for it all. We were feeling thankful for each other - for being able to persevere as a family who has to deal with the special issues autism brings. In short, we were feeling pretty proud of ourselves.  For the first time in months we thought "we got this."

Of course we couldn't leave well enough alone. Her Learner's Permit will expire in early June so we though we could knock that out today. This is when the Autism Stick does its best work - when you get cocky. Because, while Alexa planned for noise (ear plugs) and stress (hard candy to suck on) and I made sure we had all four (yes, FOUR), forms of documentation, neither of us was really prepared for the beaurocratic hell that is the Maryland MVA, for the need to now have medical sign off that the autism doesn't preclude her from driving, or from the misguided instructions that resulted in an unnecessary wait of 20+ minutes that ended with her scratching herself, stomping her feet, and in full on meltdown just before the law test. It was not pretty. For either of us. Seriously not my finest hour - I missed some clear warning signs and didn't intervene or pack it in when I should have. Lesson learned.

The up side - when we go back to finish the law test, she can make an appointment. We can schedule for earlier in the day, when she'll be fresher. And we have plotted our stress management strategies.

Often people look at those on the high functioning end of the Autism Spectrum and say things like "they look fine - what's the problem?" or "Bill Gates and Sheldon Cooper are doing just fine - I don't know what you are worrying about." I'd like those folks to have been with us today. Yes, I know, no one likes the MVA. But when's the last time it caused you so much discomfort, real actual discomfort, that scratching (hard) at yourself was the only option left to you?

Yes, eventually this too will pass, and some other unexpected problem will bring on the autism stick. And it will remind me of the courage and determination and strength that my daughter shows every day, of what comes together just right to make it possible for her to successfully interact with the world.

Maybe the Autism Stick isn't just a tool to beat us up when we let our guard down. Maybe it's really a reminder of all the work that goes into making the rest of the time look effortless.

The Long-Awaited Gameboy Post!

Okay, folks, here it is. I've been waiting to do this one since this blog started.

Picture this: You are taking your child on the spectrum to a fancy restaurant. Or maybe to a wedding, or a graduation ceremony. Maybe it's a plane ride, or a train. Or the birthday party of that distant relative you never see. Or hey, maybe it's just a trip to the grandma they love, but it's still going to be a long trip and there's not a lot for kids to do there. Whatever the reason, you and your child will be in an environment where they are expected to sit still and be quiet and well-behaved. This sort of thing is difficult for any younger child, of course, but for a child on the autism spectrum it is probably even more difficult and can last even longer. Fortunately, your child likes a quiet, individual activity like video games, but they're supposed to pay attention! It's not socially acceptable!

WHAT DO YOU DO?

Simple.

GIVE.
THE.
KID.
THE.
GAMEBOY.

It doesn't matter that this is seen as socially unacceptable, because either way you're stuck. Either your child is going to try and stay still as long as possible after long prompting to "behave", fail, get really antsy and act out, prompting The Look, or they can have something that will keep them occupied for a few hours and QUIET. Autistic children do not tend to understand the whole "social norm" thing the way neurotypical people do, which makes it even harder to follow them with things like, say, eye contact. If they're directly addressed, you can ask them to respond, but it's amazing how much we can pay attention to while focusing on something else (I'm typing this while following the Olympics). Some of these situations, you can't normally expect the kid to be paying attention anyway. Weddings tend to be long, boring affairs. That's why kids tend to be either herded to a day care room or not invited. No one's going to be looking down the aisles to make sure everyone's paying rapt attention. If it's a visit with family or friends, it's better to explain than try and someone to behave in ways they have no idea how to.

Here's the thing: EVERYONE fidgets. Maybe they doodle, or fiddle with jewelry, or play with a piece of paper, or tap their foot. It gets annoying sometimes, sure. but everyone does it, yourself included. You might not even notice it. But playing video games or reading a book at the table can serve as just another type of fidget, and it's a much less intrusive one than others. Let them have the thing, and you'll have much more time to enjoy whatever you're doing instead of doing damage control or having to put up with "But I'm boooored~!"

A couple notes here, though:

- First, I used the phrase "Gameboy", but anything can work. I have my actual 3DS out a lot of the time, but a book or game on a smart phone or pack of crayons and some paper all work equally well. And yeah, there are other handheld game devices, I know the names of most of them, but I figure most people reading this blog wouldn't.
- Two exceptions to this rule: Stage shows and movies. The darkness makes it difficult to draw and nigh-impossible to read, and it is both VERY obvious and problematic to have a backlit device out. A lot of them mess with stage sound systems, and depending on the license it's usually illegal to take pictures or video of the event, and ushers are trained to go after any possible interference they see. If you don't think they can handle movies, don't push it.
- Keep a pack of crayons in your purse or pocket anyway. It helps.
- You want the volume down. Tell them this if they won't keep it turned off anyway, or invest in headphones. Depending on the environment, you might want them anyway. You can pick up a pair at the dollar store.
- If you're raising a small gamer, check the ratings before buying. It's not rated "M" for "Mommy", and while not all games are incredibly violent, they aren't all child-appropriate, either. Like movies, use discretion. I'd also recommend review websites if you're buying them yourself to avoid getting a badly glitchy game.
- Used books are good if they don't trigger an allergic reaction. Used games are just as useful- GameStop allows you to trade in old games and buy less-expensive used ones, and GameFly is essentially Netflix for video games.
- Also, Pokemon. It gets special mention here because it is created by a guy with Asperger's Syndrome, and because of that is somewhat uniquely tapped into that whole completist, collector mentality. It is fun, but beware: IT IS INCREDIBLY ADDICTIVE. You might be able to get them to put it down, but you will probably never get rid of the thing completely. And you will hear a LOT about it.
- Sometimes, there will be noise. Sometimes, it just won't work. Know when to take them outside for a bit before it ends in tragedy.

Spectrum Siblings

Today is my son's 15th birthday, so it seems a good time to talk about the special place that neurotypical siblings have in the lives of people on the spectrum.  And by the way - don't believe a thing either of my children says about this issue - they will tell you they don't like each other but  I know the truth.  My reflections will touch on a variety of spots on the spectrum, as we know people more profoundly impacted than Alexa; but I don't pretend to know what it really feels like to be there and so I'm going to focus more on the Aspie sibling as that's where we live. 

Ben is four years younger than his Aspie sister and as such has given her the opportunity to be "in charge" and to teach him all sorts of things - which cartoons have the best characters, how to play Pokemon on a Gameboy, and how to navigate school and daycare.  I've always found it really touching to see Alexa helping younger kids (she loves them) and Ben was her first "pupil."  Somehow folks forget that as "big" siblings, our kids on the spectrum are role models (often for the better but occasionally to our frustration - think specialized interests) and this is a really nice opportunity for them to shine.  I recall that when we told Ben about Alexa's diagnosis he said "I have Bensberger's Syndrome, right?"  He totally saw the diagnosis as a good thing to emulate, not a detriment, because he wanted to be just like his sister.

It has been interesting to watch Ben grow into his own space in our family.  Even though he's the younger sibling, Ben still exhibits the caring and concern often seen in siblings of kids who are somehow "different."  He is Alexa's biggest fan and staunchest supporter.  He makes lunch for her when they are together (even though she could do it herself) and he worries about her when she tries her independence.  And he's shown that same care and concern for kids at school who are on the spectrum - he knows first hand how to look out for them. Though he doesn't mention it often, I know that he, like other siblings, thinks about the future and what his sister's life will be like as an adult.  We're fortunate because we all assume Alexa will be able to live an independent life in a family unit of her own.  But Ben will occasionally hint that he thinks about that time - "Yeah, I know I better be the one having the grandchildren because babies scare Alexa," or "Don't worry, I won't let you starve, Alexa." I know of several teenaged siblings of more profoundly impacted people who have spontaneously volunteered to their parents that they will become caregivers when the time comes.  I can't quite imagine what that feeling is like - though I know many parents who make plans so that this conversation doesn't have to happen for real.  It's interesting that one of Ben's friends is also a spectrum sibling (though she is an older sibling of two younger brothers on the spectrum) - they seem to have a bond that comes from sharing what that means.

But I don't want  to paint these siblings as saints - they get frustrated too.  Frustrated because they never get to try out the other back seat as it is permanently "claimed" by an Aspie who needs routine and sameness.  Frustrated because they can't easily change the subject of conversations or spontaneously shift plans.  Or because they can't eat at their favorite restaurant because the texture of the chicken nugget doesn't work for their sibling.  Or can't watch what they want to on TV lest they disrupt the schedule.  For those of you who watch The Big Bang Theory, imagine being Leonard.  It's not always pretty, particularly when both Leonard and Sheldon (not a stated Aspie but a close approximation) are real life children.  It's amazing to me that Ben (and many other spectrum siblings I've known) don't protest more than they do - probably because they don't know anything different.

What might be the most interesting aspect of spectrum siblings is one they likely never know about - the "control group" in the experiment of parenting.  They serve as a yardstick of what "typical" looks like.  Sometimes it is what lets us know there's an area of concern - particularly if the typical sibling is older, a parent is able to recognize that developmental milestones that aren't being met.  Other times they reassure us that our parenting skills aren't so bad: "Gee, Ben just did that with ease, it can't be all my fault." 

Being a spectrum sibling for sure impacts these kids, often in good ways, occasionally in less comfortable ones.  But the amazing thing is how much they love their brothers and sisters, quirks and all.  And that deserves a shout out. 

Greetings from The Beach (from Alexa)

Greetings, people of the Internet! This is Alexa, writing from Ocean City, Maryland! It's probably being POSTED a week later, of course, since this condo doesn't have internet activity, but who cares about semantics? Besides me, anyway. Since we're at the beach, I figured I should talk a bit about vacationing with a child on the spectrum and how to best keep them from going insane.

A. The Beach: Not for Everyone.
My family goes to one beach or another just about every year. It's fun, but honestly, I'm not a huge beach person. I like warm weather, I like the water, and seashell collecting is awesome, but there's one problem- I hate sand. Its ability to get so very, very hot is annoying, yes, but the major problems are tactile - sand does not feel very good, being all irritating and gritty - and the fact that it gets EVERYWHERE, requiring long showers outside with cold water to get the sand out. And it's really annoying if it somehow invades your sandwich. I don't care about the puns, I do not want to eat sand. You don't know where it's been. Also, getting all sunscreened up can be a pretty annoying process, considering the smell and the time and the not liking other people touching you can all come into play. Around the time I hit my teens, I just stopped going with the rest of my family most days and instead spent the time sitting on the condo balcony or in my room or wherever, reading. If your child is younger, though, obviously there may be some problems. But if they're at an age where they can be trusted alone for a while and they REALLY don't want to go, there are plenty of other options while you're there your child can enjoy. A lot of condos and hotels have swimming pools, which have the sun and water without the sand, and there tend to be some attractions geared toward kids at the boardwalk. You don't have to spend the entire day at the beach itself. In fact, considering how long your average sunscreen lasts, you probably don't want to.

B. Give Them The Gameboy.
No matter where you go on vacation, or anywhere else, this one will turn up. I can write an entire blog post about this, and probably will later. If you're doing something that requires children to behave and be quiet, like going out to dinner or sitting through a ceremony or visiting relatives or a long car ride (not socially required, but your sanity will thank you), and you want them to actually be quiet, GIVE THEM A DISTRACTION. If it's actually interesting, an autistic child can focus on playing a video game and the conversation, even if it looks like they're just playing the game. If it's not actually that interesting (like a wedding ceremony or waiting for dinner to be served), no child is going to want to sit through it, so please don't force them. It's better to have the quiet rudeness of the kid playing a game while you're talking than the much less quiet, far more eye-catching rudeness of them getting aggravated and throwing a tantrum or very agitated fidgeting. Now, I say Gameboy, but anything can do, it's just the one that hits the most kids. Crayons and paper work, especially at restaurants (my mom used to carry some in her purse just for that purpose), if your child reads, give them a book, if you can distract them with music, bring in your iPod, the point is that children are not known to like sitting in one spot while someone talks about something boring for long periods of time, and autistic ones are far less likely to know the social cue of "be quiet and wait this entire long boring time" than others. Non-autistic children tend to hate it, too. You're not going to bring a three-year-old to see Twilight and expect them to pay attention. The same rule applies here. (Also, don't bring your kids to see Twilight, there are some REALLY awful messages in that stuff and they got Cronenberg to do the birth scene.)

C. Museums- a Quick Primer.
Here are things kids want to see in museums:
- Dinosaurs
- Space ships, planes, trains, and other cool vehicles.
- Stuff they can actually touch and interact with (Science museums are usually good for this).
- Pirates, ninjas, knights, and items related to them (probably).
- Animals.
- Exhibits you can walk around in (The ship in Air and Space, rainforest exhibits at zoos)
- Sparkly stuff like gemstones, jewelry, and shiny rocks.
- Things related to their specific interests.

Here are things kids DON'T want to see in museums:
- Art (You can't touch it, you can't make it, they aren't gonna care how pretty it is.)
- Random articles of clothing (unless it was owned by a princess or a ninja or a princess ninja, skip it.)
- Furniture (What's the point of a chair you can't even sit in?)
- Papers, books, other random items.
- Buildings (Just don't try and explain architecture to them. If it's not one of those REALLY cool ones, it's not going to be worth more than a minute.)
- Things that are scary (Bugs, graveyards, loud noises, the dark, sharks, large carnivores, caves, things supposedly haunted and mummies are all potential big hitters.)
- Almost ANYTHING that requires staring at for more than a minute or two. They've seen it. It's not moving. Can we move on?
- Things you like. See above.

And so on. You know this stuff already. At museums, you're not allowed to touch anything, have to keep your voice down unless you want to annoy the other visitors, and are supposed to just stare at random objects. It's probably not going to interest kids that much. To make matters worse, you have to walk around at the adults' pace and there's never anywhere to sit down. Zoos also have the added problem of weather- since it's outside, it can be really hot, which will sap their patience even faster, despite the animals being cool. Don't spend five minutes or more on one thing unless everyone in the group's okay with it, don't put an autistic kid in a big group because they WILL end up having a meltdown sooner or later, and save the art and history stuff until they're old enough to get it. Look them up online while you're planning a trip- some art museums have specific activities for kids at certain times, and things with a lot of hands-on exhibits or things kids usually like, such as science museums, are pretty much safe. Battlefields are a special case because they probably have more space to run around and some of the sites are pretty cool-looking, but unless your child's a history fan, they don't want to be lectured and you don't want to lose them.

D. Loud Noise Zones.
These would be amusement parks, crowded condos, and ill-designed museum halls with echoes, among other things. If your child's noise-sensitive, this will be bad. If they're not, but they make a lot of noise, this will be bad for EVERYONE ELSE. Plan accordingly, and see my previous post about fireworks. And remember, large groups of children will be loud.

E. Shopping With The Impatient for Clothing.
No.

The Waiting Room Moms

When Alexa was first diagnosed, lots of people told me I should find a support group.  Her pediatrician even looked up information about local groups and shared it with me.  And as time went on there were variations on the theme “So, what support groups are available?”  I tried our local Asperger’s support group, dropped in from time to time if the monthly topic interested me, and even recommended it to new parents.  But, I have to admit there has always been a part of me that’s said, “Really, I have to squeeze in ANOTHER thing?”

Parents are busy – there are all sorts of demands on the typical parents’ time.  Sports, scouts, and school demands on family time are the topic of many an article or study.  Modern family life seems to mean a hectic rush from dawn to dusk to cram 16 hours of activity into 12 hours of daytime.  Now add to that Social Skills group, Occupational Therapy, and Psychotherapy plus a myriad of specialists appointments.  And try to make sure that your “typical” child has all the opportunities his or her peers have.  And add to that going to a support group so you can learn more and find peers?!? You get the picture.

Enter the “waiting room moms.”  I say moms because, for the most part, it’s the moms who are logging the hours in the waiting room for whatever reason (though the best idea yet came from a dad – more on that at the close of this post).  There is a community that springs up in the waiting rooms of therapists who treat multiple kids on a regular basis (as in, you have a weekly appointment and so do several other families).  I first noticed my community in the OT waiting room, just about the time the book “Rules” came out (it’s a great chapter book about a girl whose brother has autism) with a plot line about the waiting room group.  And I realized there was something special about the waiting room dynamic.

At that time, the OT worked out of her basement.  Her “waiting room” was four chairs, set in pairs that faced each other.  If you were lucky, the chair across from you was empty and you could prop your feet on it.  If you were really really lucky, the chair across from the one next to you was filled with one of your favorite moms.  We identified each other by our kids – Tate’s mom, Brad’s mom, Mallory’s mom, etc. (not real names, by the way).  But we knew each other by the comfort and advice we gave one another.  Like the time Tate’s mom told me she put a snug undershirt under his regular clothes to help make him more comfortable.  Or the time I gave Brad’s mom a tip on summer camps that provide disability support services for no additional cost.

When Rita the OT moved to a “real” office we weren’t sure what would happen – there was so much space, we wouldn’t be forced to speak to each other anymore.  Would those conversations continue?  Particularly with the Tuesday Morning store in the same office complex?  As it turned out, the support group just got bigger.  And we started acknowledging its place in our lives.  One group of moms (the slot just before ours), made sure that they stayed together when the schedule was (re)arranged every 6 months.  My set of moms actually got to know each other’s first names.  And on occasion we’d say “Oh, I’ve been waiting for Wednesday so I could ask you…”  I felt bad when John or my mother in law did OT duty – I suspect they got a few odd looks and I know John was questioned on my whereabouts once.

We also started attracting the occasional scared looking “newbie” parents.  It’s funny, you can’t really say “Clearly your child has autism. Feel free to ask us questions if you are scared.”  But the subtle (or maybe not so subtle) ways those doors were opened always intrigued me.  Sometimes it was as simple as saying “No apologies needed.  Been there, done that, it’ll get better,” to the mom apologizing for her child who is melting down.  Sometimes it was engaging in conversation with the child about their “special interest” and telling them our own kids had that interest when they were younger.  And sometimes the newbie moms just heard us talking and started asking questions.

And then Abby’s dad arrived.  For a couple of months we wondered why he left for a chunk of time during her appointment.  Particularly when we learned they lived an hour away.  Gradually, he got to know “the moms” and eventually he told us where he went – to the bowling alley across the parking lot, to get a beer.  Why hadn’t WE come up with that?!?!  Because really, what we ALL needed, as much or more than chit-chatty support, was “down time.” 

And so began “bowling alley time.”  Somehow, moving those conversations to the bowling alley snack bar made us feel like we were doing something for ourselves.  Sure, we still talked about kids and school and camps and such; but it became a whole different and far more relaxing conversation in that other context.  It felt like we were choosing to do something apart from our kids.  We were getting ourselves out of the “I’m a parent of a kid who needs these services” mode and into “I’m a normal person hanging out in a bowling alley” mode. 

I don’t miss the exhaustion from running to three appointments a week (in addition to after school theatre taxiing and that was just for one of my kids).  But when we stopped going to OT last summer, it wasn’t just the office staff that I felt sad to leave.  I also left my “bowling alley peeps.”  And, crazy as it sounds out of context, it was a big step for me too. 

All of us parenting on the spectrum need a place we can go for information and support.  Sometimes you find it at a formal support group.  Sometimes you find it on the internet.  But if you get lucky, you might just find it in the waiting room or at the bowling alley.