Hello, Ryan!

Don't forget to check out Ryan helping out other special needs families!

What I Do: Volunteer Luncheon

Today was the lunch for volunteers at the lower elementary. It was really very nice. It was a lovely little buffet, and the teachers were also allowed to come in and get free lunch (which I think is awesome), and then you sat down and ate, and maybe talked to people. Mostly, I talked to one of the teachers I volunteer for, and with Andy's teacher, but I also got to meet a couple of other volunteers doing awesome things, like the gentleman who volunteers in his daughter's classroom because his workshift doesn't let him see her when she's home, and the very nice lady who does stuff in the library. Seriously, volunteers at schools? They totally rock. I kind of forget what I do is considered on par with the wonderful helping these other folks do.

So came the question, when one is at a volunteer luncheon and knows, um, nobody: "So... who do you volunteer for? What do you do?"

Apparently, most volunteers come in and do one of three things:

They run activities, like the book fair or a special assignment, like when the kids have a project in class that requires extra hands;

They come in regularly and help out in the classroom, mostly prepping material for their kid's teacher;

They come in regularly and help out with engaging the kids while their kid's teacher runs small groups or 1:1.


And then I come out with, "I teach sign language in three of the special ed kindergarden classrooms" followed up with, "My kid is not a kindergardener; he's in second grade." And next year, I totally plan on continuing the program. In fact, if I can get myself and my money together, I'm going to try for certification through Signing Time to be an instructor. Then I want to expand the program to include more classrooms. Signing is great for getting around the processing speech problems among the kids in the SpEd rooms, so I don't see why it wouldn't make for great visual prompts and supports in other classrooms, too. They teach the kids Spanish, why not ASL?


Yeah, that's what I do. At least it apparently made for nice lunchtime conversation; and most folks I met wanted to learn a sign, which I thought was awesome. Every little bit helps, right?

Moms Rock My World

I just wanted to pop in and say, you moms and dads, raising your awesome kids, or helping raise awesome kids even if you aren't a mom or dad yet, you guys are awesome. And I wanted to take a minute and mention some moms who have recently been rockin' my world, since we seem to be going through our Spring Fling with the boys- big changes. When the world is rockin' and rollin', it can be nice to just think about the awesome rocks that keep reality pinned into place.

And, yes, I could go on. I seem to know a lot of awesome moms. I think I just kinda leave the not-awesome ones by the wayside. To the awesome moms I know who I haven't mentioned here: you aren't forgotten. I just need more posts about awesome moms.

So:

Thank you, Stimey. You Rock. 

A big thank-you to Stimey, one of the rockin'est moms ever. When the going got tough, Stimey sent hugs and good thoughts and hugs and a DS lite. Which Joey is playing on right now, instead of sleeping, but that's because he is SO happy, and it has saved our lives on multiple occasions since its arrival. And besides, Stimey likes rodents. We are total soul sisters. 

Thank you to the awesome Niksmom!

Another mom who totally rocks? Niksmom. Even when I want to just run up and hug her because her world seems so topsy-turvy and her baby isn't feeling well, she thinks of me. And asks. And sends hugs. I am thinking of you, too. And sending hugs. 

Love to my sister-in-disguise, Christina!

Want to meet an awesome mom? Come have tea with my sister, Christina. We were separated at birth. Well, we at least lived in the same town, even if we didn't share parents. Kind of. Anyway, if I had a sister, I would hope she would have been awesome and crazy like Christina. It helps to have a friend down the street. If and when we ever get to actually see each other. That's part of the "fun" of being special needs moms. 

Thank you for being awesome, Aunt Nancy!

A big hug and plenty of sugar for my Aunt Nancy. I still remember coming home on dark days to find my bed made. Your hugs have brought smiles to me when life seemed to be falling apart. Thank you for understanding my boys and having a good ear for listening. I love you. 

What? Don't you think of Maddy as a goldfish, too? 

I can never think of awesome moms without mcewen coming to mind. Whitterer on Autism is now a great resource for finding out about books and apps and stuff useful for autism. But we also still get peeks at her awesomeness with her kids. Hugs hugs hugs. 

Thank you to my no-nonsense, tell-it-like-it-is friend, Detre!

You know, one of the awesome treasures in life is having a friend who tells it like it is, and takes no nonsense. Thank you for showing me real strength, Detre. And lending me some of it when I needed it most. 

Hugs to Mommy Dearest!

Seriously, this woman is raising a kid with autism to play the baritone/euphonium. Just like me. How awesome is that? And her little goth girl icon makes me giggle every time I see it. Giggles are important in life. Lots of hugs. 

What? You can't see the resemblance? 

One of my other beautiful sisters; thank you to Sue, who stands by me through thick and thin and everything all around and in between. I know I don't call you enough. But I think of you every day, and send love and hugs and wishes that Texas wasn't so far away. Sue is my go-to when I need a problem solved, or a kick in the patookas to get it solved. Thank you for not letting me be a total slacker. And putting up with living with me in college. That was huge. 

Few moms totally rock like Sunday. 

When the going gets tough, the tough get Ryan Gosling to take care of business and cheer us all up. But even without our Ryan meme, Sunday rocks. Thank you for your encouragement and grinning photos and banshee awesomeness. 

Thank you for understanding, Kim. (And yeah, this is how I think of you). 

It wasn't too long ago that I made the attempt to at least try to be a part of the old high school crowd. It was a bit of a bust, but I got to find out who was still a real friend after years of being out of sight, out of mind. I mean, more than i was when I was actually in high school. Thinking of you, Kim, and someone who knows how to offer help in the middle of a meltdown. 

No mom is as awesome, and fabulous, and magical as my mom. 

Ever need that extra sparkle to make something extra-special? Or a helping hand to keep things even-keel? That one great idea to take a good thing and make it great? That's what my mom does every day. I hope to be as good a mom and as good a grandmom as she is. Whenever things get tough, I can always do the best I can by asking, "what would Mom do?" Thank you, Mom. I love you. 

Repost: Guide to the Day After Diagnosis

For a friend, who wanted just the Guide, and not the rest of the original post.

Quick Guide for Parents for the Day After Diagnosis: 



(The Day Of Diagnosis, just go home and enjoy your child. Maybe put a fresh pot of coffee on, or take up drinking coffee.)



1. Here are the people to call: 


*Local Autism clinic, if you didn't get get the diagnosis there. Here, that would both Kluge Children's Rehab and Kennedy Krieger. Some centers, like Kennedy Krieger, take a year to get an appointment for anything. Kluge takes a couple of months. A year is a little long, but a couple of months is OK. This is urgent, but not an emergency. Besides, you have other folks to call and get going. 


*The local school district. Many of teh supports your child needs are the responsibility of your local school district. You want to get a feel for the place, have an eval, get into the system- even if you decide to homeschool. 


*Your insurance. KNow what they will cover, and what they will not. Many insurances will cover OT without batting an eye, but will not cover speech therapy because it is "educational." Some insurance see "autism" and cover NOTHING. Some see it and cover EVERYTHING. Some therapies are considered educational and not medical- and this can be different from insurance to insurance, state to state. You may choose interventions that are not covered, and you need to know what you will be paying for, how much it will be, and what you will need to do to cover it. 


*The speech pathologist. Some centers have them, some local hospitals have them, and there are lots of private practice ones. Be sure they are going to work on communication, not just speech. Do they do sign language, switches, PECS? How do they use these as tools for communication, and not just learning to speak? How do they use them to encourage- but not force- speech? Do they also work with reading and other visual communication? 


*The physical therapist. Many autistic kids have gross motor problems that need to be addressed. Many don't need a PT (Joey doesn't need a PT). 


*The occupational therapist. Ask specifically about sensory integration therapies. Most autistic kids have some form of SPD (though not all!). You don't want just a buttons and zippers OT, you want one that will take an integrated approach and can address the needs of your child.


*Your pediatrician. Be sure they are immediately aware. Ask questions. What will they do for you? What do they know abotu autism? Are they willing to do some research or attend a conference or workshop about autism? If you have a doctor who seems ignorant of autism- and many are- and is unwiling to beome educated, then you will be needing a new ped. 


*Psychologist. You may need some testing done in ways the school doesn't accomodate, some understanding of your child's mental health, and yes, you may need medications. Be prepared. 


*Your local Disability Resource Center. These types of organizations can help you navigate local resources, prepare for things like Medicaid Waivers, even help you understand disability law and rights. They can also help you network with other parents of disabled children. 


*State agencies for the disabled. Many states have offices specifically geared to helping people with disabilities and protect their rights. Its a good idea to be familiar with these offices and what they actually do in your state or locality. 


*A Lawyer. You're about to become an expert in disability law. School districts and insurance agencies can be not fun to work with. Be prepared. Find a lawyer and advocate who deal in disability and educational law. BE prepared in case you run into problems- its a lot easier to prepare for a fight if you already have your champion lined up, rather than waiting until you have a problem. I haven't met a parent yet who didn't have a problem. 



I know that is a lot of phone calls. Prepare ahead of time- get a big loose-leaf notebook to keep paperwork, evaluations, even phone messages in. Just keep it by date; when you make a call, note it on a sheet with the date and a summary of what was discussed, and put it in the notebook. When the evals come, just put them in the notebook. Bills. Letters. IEPs. Anything. I even have Joey's birth certificate at the front. I'm on our second 3" binder. 



2. Here are things you need to do: 


*Relax. Your child hasn't changed. You just have a new label to point you to resources you might need.

*
Read. The books I recommend are: 

From Emotions to Advocacy by Pete Wright. 


1001 Great Ideas For Teaching and Raising Children with Autism by Zysk and Notbohm. 


That will give you a start. I encourage folks to include their favorite resources in the comments. 


*Read some more. You will need to research different methods and strategies used with autistic children. Some I can think off the top of my head are ABA (Applied Behavioral Analysis), PECS (Picture Exchange Communication System), Floor Time, Sensory Integration, Therapeutic Listening, GFCF (Gluten free/Casein free diets) {and other possible allergies and diets- if your kid has sensory issues, allergies can drive them crazy!], ABLLS (Asessment of Basic Language and Learning Skills), TEACCH (Treatment and Education of Autistic and related Communication-disabled[or handicapped] Children). 

*
Get online. Check out the links I have in the sidebar. I've developed a handout for new parents here in Virginia, I'll be happy to email it to you. Also, you can network with more great folks like us. :) 


*Go out and have some fun! Remember, your child hasn't changed! Go out and do the stuff your child likes to do! Try to introduce your child to new experiences- as you would any child! These outings may take more preparation(and work) than for non-autistic families, but it's worth it. Keeping kids locked in the house will drive you crazy, too, and deny them living. Yes, some folks will stare. You may get unkind comments, or offensive comments. But you know what? You would have gotten them even if you didn't know about autism. Now you know how to support your child in the face of these people- "My kid's doing a great job with this new experience. What's your problem?"



Summary? You now know your child is autistic. Now you have a better plan for moving ahead and educating your child- which now makes your life better, not worse. Yes, now that you know the kinds of resources you need, you now have work to do to tap those resources- but now you have narrowed the field to the resources you may need!



See? Not scary. Just needs a little information!

Riding the Roller Coaster (and Ryan Break)

I am totally sorry about not blogging. I have a ton of stuff to splash across the blogosphere, and a ton more stuff that I can't, but is really super important. I have to take care the stuff I can't put out to the public first right now, but I'm getting there. So I'll put out some stuff that is perfectly public-worthy.

First, the bad news. We had another major personnel shift at school- very suddenly, with no warning. We knew right away at home. Hence, roller-coaster city. Joey's anxiety has skyrocketed, and so he is barely holding it together, all the time. The smallest of upsets can put him over the edge.

When he came home from school yesterday, everything was in an uproar. Being early dismissal day, the schedule was, naturally, all screwed up. I had two edgy boys bouncing and screaming, so we gave up and went to the park to bounce and scream. It was working beautifully. The boys are especially fond of the section of the park with the new equipment. I will say up front this section of the park does have a sign stating that it is designed for the 5-and-under crowd. However, it is very typical to find kids of all ages on all the equipment, and my kids are very aware that they have to be extra gentle and extra careful in this section of the park when there are little kids about. Besides, they love to be in this section because the love to play with the little ones. The equipment is perfect for Joey's not-so-obvious mobility challenges, and the smaller kids are easier for him to play with. He also likes being the "big kid" to the little ones, and he likes how they are gentler (because they are younger). Andy also likes the little ones, and being the "big kid" leader in games. Both adore babies. They spend a good amount of time playing all over the park, including the "preschool zone." Hey, my kids still love Shaun the Sheep.

There were lots of younger ones out and about yesterday, and my boys were loving life. I was watching Joey closely as he was helping swing a baby and talking to a mom, when suddenly Andy comes running past me, with his crying face on. His smaller friend came after him. It took a few minutes for Andy to recover enough to come back from behind a large tree and talk to me.

"What happened, baby?" I asked, giving him a quick hug as he broke into tears again.
"That man said I can't play here!" he wailed, pointing. Sure enough, there was a dad, with a small boy, and a person I later realized was his wife, with a little girl. I encouraged Andy to go play with his friend, and the pair assiduously avoided the usually-favorite area in favor of running among the trees. All seemed fine, just a misunderstanding, no big deal. After all, there were several other children on the equipment in the 6-8 range, and nobody was being rough or unruly.

But as I watched, Joey finished his conversation and headed for the equipment. Sure enough, the man stopped him and started speaking with him, and Joey bounced on his heels a little, a sign he was unhappy. I got up and headed for intervention. As I closed in, I heard the man say, "This area if for the babies! You're too big to be here! Go on!" Joey repeated back, "It's for babies!" in a tone I knew was bad news.

"Go on and play, Joey," I addressed Joey firmly as he turned to me, and emphasized my words with sign, Play.
"The babies don't like me," Joey frowned at me.
"It's OK, go play," I repeated, and repeated my sign.
"This area is for the under-fives! He can't play here!" the man shouted at me.
"Excuse me, sir," I replied firmly, "but this is a public park, and my children need this kind of equipment. Joey," I repeated my sign to Joey, "go ahead, sweetheart." Joey climbed up on the equipment, and the man threw his hands up, clear exasperated.
"What, is he retarded or something?"

No, I didn't deck him. Sorry.

"Sir, this is a public park, and using that word is very offensive." He huffed off instead of answering me, saying something to his wife that made her frown and pick up the little girl. I did not pursue the point. In this state, he could easily have a concealed weapon, and I had made my point clear. I watched from my usual seat as he gestured and I could hear he was still saying things. Whatever they were, the other families were now all glaring at him. Joey called something to him, trying to include the man in his game- something Joey often does when adults are about. The man ignored him. At some point in the proceedings, another father turned to the man and something. From the sudden desist of ranting, I assume it was something to the effect of "shut up."

I should note here that neither Joey nor Andy did anything to hurt their children, block the slides, push them, or anything else that might have been dangerous, intentional or otherwise. When the little ones wanted to get down the slide, Joey moved aside and let them go, cheering when they made it to the bottom, offering encouragement when they were at the top. Joey waved at the man's little boy, that's the only contact even attempted with these particular children.

The couple finally decided to scoop up their kids and go away. Neither glanced in my direction as they went out, which was just as well.

That is when the families started coming over to me.
"What jerk." "Are you OK?" "We sure love your boy, he's so sweet." "Is your other little guy OK? He looked upset." "What was that guy's problem?" Several were upset that he had referred to Joey as "retarded" in his stream of criticism of my parenting choices.

Sometimes when we run into people like that, I sometimes wonder if it's me. I won't say he didn't have a point. I will say there were more constructive ways of communicating it.

So we need a good Ryan break.

Expectations

Joey is ten years old now. I keep thinking back to when I turned ten. I liked to walk through the woods. I liked to make stuff. I could get on my bike and ride down the road to pick blackberries. I could make Christmas cookies. I still liked my Barbie dolls and my dollhouse. I liked to make cassettes of my favorite music- with my fancy record-player, I could take the music right off the records. That was a big deal, very fancy (I could also record tape-to-tape... woo-hoo!)

I also have been looking at what other 10-year-olds I know or knew like/d and do/did. For the Cousins' tenth birthday, we gave them a keyboard and a telescope. The took my boys on a tour of my Uncle Lou's property, and took them to see the chickens next door- something they normally could do by themselves, without adult me tagging along. Awesome Neighbor would go around the neighborhood, visiting friends and just generally being a kid. When you talk about ten-year-olds, things like go-karts and playing spy and running down to the swimming-hole come to mind.

Joey can't or doesn't do these things. I can't imagine him in a workshop, watching and helping with building... well, anything. He likes cooking, but needs a lot of supervision. He likes toys, but doesn't actually play with them very often. He would have little clue what to do with a telescope, and hasn't shown much interest in the keyboard here. Having him go anywhere independently? That is asking for big-time trouble, with bolting and "eloping." He's interested in making his own music lists... kind of.

In some ways, Joey is 15. He can do math like a whiz kid, for example. And in some ways, he is 5. He still likes his kisses. But there seem to be very few ways he is 10, in any way I can see most ten-year-olds meeting expectations of ability and maturity. It's not just me, either. His OT hasn't moved him up in the social skills groups- he's still in with the 6-8 year crowd (and these are disabled kids, so they are lagging even for 6-8 year kids), not the 9-12 group.

Sometimes, when these kinds of thoughts crowd in, it is good to breathe in and remember what he does, and loves, and enjoys, and just enjoy him being Joey. After all, Joey is awesome. He loves to laugh and make other people laugh. He loves baseball (he's a big hitter, too!). He has completely defeated all the levels of Super Mario Brothers on the DS, and is well on his way for the Wii. He likes chattering as if he is making video "walk throughs" while he plays, now- a professor, just like his Mom, explaining what to do and how to do it and why he is taking a certain path or power-up. He loves to ask math questions, and correct you when you get them wrong. He loves loves loves playing with his brother- even if it gets frustrating and little brothers get annoying. He loves to give us hugs and kisses. He loves wearing basketball shirts. He loves the beach and swimming in the pools, and playing with the hose. He loves his scooter and his computer and his notebooks.

I told you he is awesome. And really, did we expect any less?

A Month Comes to an End

Looking back through my April blogs, you might notice something distinctly different this year: not a whole lot of autism awareness pots this month. In fact, it appears blogging has taken a serious back seat in life here. Blogging requires things like time and energy. This spring is being a bit of a roller-coaster, leaving me short on both. I am looking forward desperately to next week, when I will have all my classes graded and closed out, no soccer practice, and just a few more minutes on Tuesday or Thursday (probably not both) to do stuff like... clean. Or read. Or maybe even blog.

Andy's vision therapy is going fine; and while she's at it, the therapist is also working on his manners and some of his ADHD issues, fine motor issues, and bilateral coordination. Unfortunately, he also decided to hit a growth spurt, so Total Dysregulation is upon us- he is very brittle. He runs out of energy reserve super-fast, so we have to keep on top of feeding him. Add the constant motion, and we are in meltdown city.

On the other hand, Joey has been caught sneaking snacks again, so I have returned to the apples and sugar-free popsicles plan- ie, those are the snacks in the house. Everything else is Verboten. I have been trying to encourage scooters and other outdoors play, but glitches in the day means there is a lot of Mario Brothers being played to calm... and revv. It's a delicate balance.

Yep, I have one that needs to sit down and eat, and the other needs to get up and not eat. Great.

At any rate, Autism Awareness Month is now at its close. Most of the folks I know will also turn to their next interesting Awareness project, and leave autism aside for another year- if, indeed, they bothered to pick it up in the first place. I keep turning around to find such a lack of understanding, it stings to have it so close; turn again, and there is a sense of wanting to know; and another corner, and I find some folks who get it, and others who never will. You just never know who will be around those corners. I am sometimes surprised. And shocked. And surprised.

As the calendar turns, please don't forget us. Don't forget Joey. It is important for everyone to not just be aware for a day, or a month, but to really think about their lives and how they are living them. Awareness isn't just about putting a blue light bulb outside or a ribbon on your car. It is about understanding what it really means to treat others as you would want to be treated- all the time, every day, every moment. If we all just learned to do that, all the world would be a better place to grow and be free.

It's Music Time With Ryan

How about kitties?

For jillsmo.

Gotta love those kitties. They have such a nice, cushy life, lounging about the house, being kitties. Mew.

All Dressed Up: Let's Go, Ryan!

Spring Surprise!

Ok, you guys need a break from my depression, and this morning, so did I. But I especially needed to run outside and cover my electric lawn mower with a tarp, because, hello! It is spring! It rains! And it started to. (Good news- I did manage to cut my grass a few days ago. I just failed to put the lawn mower back into the shed, because a bunch of crap I had shoved in the shed to protect from the snow that never arrived fell over as I pulled the mower out. And you know what a pain that is.)

So I dashed outside to save my mower, since I have already killed one, and being the distractible give-a-mouse-a-cookie type, I noticed the sandbox I bought last year has completely deteriorated (what do you mean, composite is supposed to last forty years? It didn't make it six months!), and the new one (ok, its a wood vegetable bed, sue me) is still in the car. The plot where it belongs is scattered with the remnants of plastic box, plastic sand toys that got left out, sand, and lots of weeds. So I decided those weeds should go before I put efforts into cleaning the plastic shards up and putting up the new box, even though it was raining. Lightly.

So I reach down, grab a good handful of weeds, and pull.

There is this moment in life when your brain registers in your mind that something is amiss, just before you really understand what is amiss, that sets you at the edge of a chasm of fear and oblivion, because you are at the brink of Unknown Terror. It is that moment that can grab your lungs, squeeze, and creates this really amazing sound, for which we have no truly appropriate word.

Something was amiss.

And it was alive. In my hand.

Grass, weeds, and small northern brown snake took to flight from my palm as I screamed like a little girl.*




Now, you can place that next to your picture of me doing battle with turkeys.


*He was not harmed. I am not afraid of snakes, except for copperheads, so once my brain registered is was, in fact, a snake, I was fine. I made sure he slithered away smoothly and happily into the weeds around the base of my lilacs before not pulling any more weeds and heading back into the house to Do Something Else.

Three Minutes.

We were at the park. We've been spending a lot of time at the park lately, because going farther involves a lot of prep and anxiety, and I just haven't been able to do it alone anymore. The park is familiar, the boundaries well-set, and I can actually do a little writing or grading or whatever. You know, he wanders about doing the Joey thing, and I sit in a set place where he knows I will be, and do the Mom thing. And Andy runs about doing the Andy thing. And I do a regular headcheck. Child one, child two. Child one, child two.

Today, I looked up doing my headcount, and three boys who looked alike (must be brothers or cousins) were headed straight for me. This is never a good sign; and sure enough, they complained that Joey was cussing at them. Joey's explanation was that they were "being mean" and "ignoring me." So we had a little talk about how some people are not interested in being friends, and we should just leave them alone. Then we talked about not using bad words, and that we had been having this discussion all week, so it was time for him to be suspended from the Wii for the evening. Then he bounced off with instructions to tell his brother we were leaving in ten minutes.

And I finished up reading the paper I was grading, about three minutes, and looked up for a head check. Child one....

No child two.

I gathered my things and headed over to Andy, asked him if he could see Joey. After a brief look about, the answer was no. He ran up the hill. No Joey. The park realized I was looking for Joey, and I started getting reports. He had gone up the hill. He had been seen on one road. He had been seen on the other road. He certainly was not here.

Andy ran ahead to check the car, the other adults spread out in a search; and I called JoeyAndyDad to get him on the move. We agreed for me to jump in the van with Andy and start along the familiar path home.

In another minute, I had the call from JoeyAndyDad- Joey was found... he had made it about 4 blocks, 2/3 the way home. He must have run part of the way, and started out as soon as I released him to find his brother.

My world just contracted a little more.

A Chink In the Armor

The world is coming to an end. Or more realistically, there is a tiny crack in one of the screens of the Nintendo DS.

Joey found it this evening when Andy wanted to watch Sonic the Hedgehog instead of playing Wii. After a hard day of baseball and park, Joey wanted to relax with his World 8 Castle on the DS. Some days, you just gotta have some Luigi.

What he found was a crack. We already had been plagued by the infamous hinge crack, but he accepted a clear case as a quick fix. But a screen crack isn't so simple. He was devastated. He curled up next to me, playing his game, in tears because he was so upset about the screen being cracked, and perseverating on it.

"It's a crack. It's broken! My DS is broken!"

Sore at heart that I could not fix this, nor can we afford a new one right now, I sent the child up to his father. JoeyAndyDad did his best, cleaning the screen and the game, making sure everything still worked.

Joey came down again, still sniffing, but with better words, such as, "It' just a tiny crack!"

Then he curled up next to me, and said, "Daddy did his best. I appreciate him trying."

That's my boy.

Adventures and Realities

The sky is high and blue; only the small, puffy clouds that announce a glorious spring day punctuate the perfection. It's cool and breezy, and we have no place we have to be-- no school, no sports, no therapy. I so wanted to go to the zoo today.

When the boys were small, this was the kind of day that would find us on an adventure. We'd pack ourselves some snacks and drinks and spare clothes, the rest of the travel kit, hop in the car, and go explore the world. Zoo, beach, museum, mountains, Jamestowne, park, aquarium, Dinosaurland, somewhere new and interesting and fun. We'd look for shark teeth or find sheep at Wakefield or ride out to feed the goats or chase chickens.

No, these outings were not the same as one might have without an autistic child in tow. Joey might not see as much or understand as much or even care as much; but we were out and about and doing.

It is a life we have left aside the road. With bolting, I can't go with two boys anywhere by myself anymore. We must have a ready set of hands and legs to run in case of a sudden anxiety attack. Going anywhere outside a 20 minute drive now involves huge preparation for both boys, with very limited possibilities for success even so. Anything interrupting comfortable, predictable sameness risks major consequences. It is no longer safe for my boys to have only one adult with them.

Even when they were little, not every outing was a picture of perfection. We have pulled Joey about a zoo in a wagon when he refused to walk. I have sat on benches with Joey and had Andy wait for calming or hunger to be appeased. There was the infamous bolt at the Renaissance Faire, when Joey was being chased by fully costumed knights. Thank goodness some kind soul managed to watch Andy while we got Joey out of the woods.

But there was also the trip when the budgies landed on our sticks and we got to let them, and feed a giraffe. There was that beautiful first time Andy saw dinosaurs, and his face was alight with dreams. There was the trip when we watched rays glide through the water like birds. There were happy lunches in Williamsburg, smiling faces on 15th century boats, and happy watching of orangutans and playing on giant pizzas. They may not have all been rousing successes, but at least we learned to try.

Now, I think hard before I even take them to the park. Joey wanders about with a shovel or spoon, writing in the air and occasionally shouting things at random, or roaring like Bowser until the other kids steer clear of him. Taking him to a different park can be overwhelming, as he displayed all too clearly just yesterday. Is it worth all the anxiety and stress? There was a time when I answered yes. That was before anxiety meant Joey might run into the street.

Still, I so wanted to go to the zoo today.

Ryan Gosling Friday: Go Ryan!

Ten Years Ago

Ten years ago, I was a brand-new mom of a beautiful, squishy, soft baby boy. When I first touched his cheek, it was so soft, it was like touching nothing at all. My Joey came into the world via emergency c-section, precisely at 8pm. And who could not love that beautiful, smoochy Buddha Buddy?

It's hard to imagine loving someone more than the moment my Joey came into the world. Until the next moment came, and we all loved him even more. Then the next moment came, and we loved him even more...

If you have never had a newborn in your arms and sniffed that newborn baby head, you cannot possibly imagine the true meaning of the universe; until you smooch that baby head, you cannot imagine the totality of existence. There is nothing more life-changing than the real understanding that life is more than just you. That the cosmos is bigger than just you. Not just know it. Understand it.

I had no idea how much I would learn from my Joey. If I had known, I would have had him years sooner. And he would have a lot more siblings.

When Joey was born, my mom said I would be amazed how fast the time would go. She's right. I'm staggered. Time slips through our lives with no turning back, and the best you can do is hug your dear ones tight and enjoy the ride. Fortunately, Joey still loves to be hugged. And smooched. And squished really, really good.

Happy Birthday, Buddha Buddy. You are my Joey-Boy, forever and ever.

The Big 1-0 tomorrow!

Am I ready for Joey's birthday?



Why, yes. Yes I am.

Being Aware: What Does Autism Look Like?

With autism awareness month upon us, one of the questions I often get from those not familiar yet with autism is, what does autism look like? There are several different reasons for asking. Some folks want a list of thing to "look for" in their own family and friends, for a sort of self-diagnosisof things they see. This is a difficult reason to answer, because autism does not manifest in one single way; every autistic person is unique, just like the rest of us.

Also, when I start making that list, I am often interrupted by comments such as "well, I do that, and I'm normal! (or not autistic!)" because so many of the red flags are not a matter of doing or not doing, but a matter of degree. I wind up in the discussion of the difference between a tantrum and a meltdown. It is hard to explain to someone who has never seen one or the other. Where does one draw the line between "very focused" and "hype-focused"? Sometimes it is not so obvious. And some people are just not very bright, and trying to tease the knife edge between them is useless. Sometime you just have to say, "yes, I know you really like cats, but it doesn't get in the way of you doing other things, like eating." Which isn't the boundary at all, but at least they get the idea.

Then there are people who ask this question because they want to look at random strangers and diagnose them. After all, with many disabilities, you can see the person is disabled. They have visible differences- wheelchairs, for instance. Or distinctive facial features. Also, I get a lot of comments about how Joey doesn't look disabled- especially when I pull into the handicapped parking spot and get out our hangtag.

Autism is an invisible disability. You can't look at someone and say, "oh, s/he must be autistic!" You need other cues. That is something to keep in mind as you walk around in the wide world- just because that person doesn't look disabled, doesn't mean they might not have special needs. Be prepared to meet them so they can join in the working of the world. After all, you want your special needs met, right? In fact, people who don't meet them often get labeled very quickly in your mind as a person to steer clear from, right?

Anyone you meet might or might not be autistic. Autism occurs in people with or without other disabilities. Because autism is a pervasive neurological disorder, other disabilities can be bundled into the issues. Or not. Consequently, autism looks different for everyone- as uniquely as you and I look from each other. Autism is a diagnostic label related to certain behaviors and deficits; it may not even be a single condition or state, but a variety of pervasive issues that have similar results. Social connection/social skill difficulties, communication disorders, issues of movement. Neurology is pervasive in our bodies, so anything inside or out might be affected- sensory systems, digestive systems, respiratory systems, endocrine systems... I could go on.

So there is no one way autism "looks". I can only tell you what it looks like for us. And for us, JOey is the ultimate face of autism; autism is intrinsic to who Joey is and how he experiences the world. Watching him, listening to him, accepting him helps us to have new eyes and see from new angles, to understand the world from a point of view we could never have imagined without him.

What does autism look like? It looks like birthday parties and video games and days at the beach. It looks like grins and giggles and sparkly blue eyes. It looks like round rosy cheeks and running around the bases. It looks like homework and balloons and tricycles. It looks like a boy, growing up fast.

To us, autism is a roller-coaster, much like raising any other child, with the difference of the extremes. You notice the difference when you see Joey next to his peers; the things they do oh-so-easily (such as, say, talking and walking), are not as easy and free with Joey. But when you just have him, can you see it?

Well, can you?

Friday: Hi, Ryan!