All I Want for Christmas. Or Chanukah. I'm Not Picky.

It's been a long time.  Like a two months long time.  Sorry folks; there's been a lot going on the autism universe, and every time I went to write, I discovered someone else that already had, sounding way better than I ever do.  I think going forward I will post those links here, so I can share even if the words aren't my own.

I know that the holidays have just ended, but here I am, still digesting what lessons this holiday season has brought.  I've had a lot of occasion to think about acceptance this year; not only what it means, but what it looks like.  How to honor that in daily life with Brandon.  It's an ongoing, constant learning process for me, but for the holidays this year, it took the form of presents.

We happen to be a dual holiday household, so there are lots of presents.  Chanukah presents.  Christmas presents.  These are currently the only niece/nephew/grandchildren/I don't have kids of my own and think it's cute to buy for yours presents.  My home looks like a sub-section of Toys R' Us.  As the parent of an ASD child, presents can be anxiety provoking.  Usually for me, not the child in question.  Want to see me look like a deer stuck in headlights?  Ask me what Brandon wants.  The difficulty is not that he doesn't understand that there's a holiday.  Trust me; Saturday morning at 7 am on the first night of Chanukah, sunshine came bursting through the door of my room yelling, "Do you know what today is?!"  Try explaining the concept of a lunar calendar and the holiday not starting until sundown to him.  Go for it.  Let me know if you have any luck, OK?

No, the difficulty is in finding gifts that he's actually going to like.  In the past, this has involved serious guessing on my part.  Unlike other kids, Brandon didn't tell us.  So his gifts were always a mixed bag; lots of books about animals, toys selected to work on specific skills he needs help with, toys that I thought would push him to a more age appropriate level of play, toys that were more of what he already owned, just to make sure there was *something* in there he would like.  Toys that very often spoke more about what I hoped for, what direction I thought he should be growing in, than about who he is or what makes him happy.

Learning to accept Brandon as exactly who he is changes things though.  It has meant listening - really listening - to the logic behind many of his choices.  Understanding that behind his desire to watch his old "Baby Einstein" videos again is really a love of watching the animals, and a love of the classical music it is set to.  Recognizing that his beloved "Sea Rescue" TV show may not be on DVD yet, but there are other Sea World related toys and DVD's that would allow him hours of imaginative play of his favorite sea animal variety.  Throwing out notions of gender specificity in toys and knowing that he wants Disney princess toys, and Ariel in particular, so he can cast himself in the role of prince.  Ariel in particular because, of course, she is the princess of the sea - and she can come on his Sea Rescue adventures with him.  To be fair, we were also gifted with this being the year that Brandon has finally asked for specific toys.  In fact, he has spent many hours trolling both the Amazon and Toys R'Us websites, pulling us into his room to show us what he "wants to buy."

It has also meant advocating for him.  Explaining to family and friends that yes, I know what I've suggested you give him may be unusual.  I understand that the age range on the box may be far under what his actual age is.  But what is that against the look on Brandon's face when he opened his gifts this year and all of them - every single one - got a whispered "yes!" and a look of joy and excitement?  When he opened his stuffed Ariel and actually squealed, then planted a great big kiss on her?  What is any of that when my son felt like his wishes and dreams had been heard and answered?

The real gift, of course, didn't come in a box.  It never does.  Of course, if you've been thinking about this at all, you've also realized that the real gift wasn't for Brandon at all.  It was for me.  In opening my mind to the possibilities of who Brandon is, instead of who I might want him to be or what developmental milestone I think he should be pursuing through play this year, I gained my son.  The real person, with his real loves, hopes, and dreams.  The kid that wants to see Sea World with everything in him, appreciates classical music, and loves his new toys so much that he is asking much more often for us to come play with him.  He finally thinks we're hearing him, and he is honoring that by giving more of himself.

Santa, you brought me just what I wanted.

Really, does this face not say everything?

Ticking Away, The Moments That Make Up a Penguin Day

OK, I have to say it:  There are things about Brandon being autistic that I absolutely adore.

Yes, I know that Brandon is not separate from his autism, and that without it, he's simply not Brandon.  There are certain traits though that, at least to my eyes, are at least in part attributable to the fact that he is autistic.  One in particular, that, as the mom of two growing kids, I cherish, and that is, for lack of better phrasing, his continued innocence.  Maybe it's a delay in maturity; maybe it's an outgrowth of being wired not to conform to "typical" society and therefore not being in such a hurry to grow up.  Whatever it is, I love it.

What does it look like, this hard to define trait?  It looks like picking TV shows such as "Octonauts" as favorites, or deciding that it's OK to watch Baby Einstein DVD's again because they have animals and music that he likes.  It looks like doing a happy, waddling, tap-type dance so he can look like his "Happy Feet Two" friends whenever you mention penguins lately.  It's not caring that "My Personal Penguin", a Sandra Boynton board book is his favorite bedtime story, complete with fingers in mouth and best furry friend Roscoe the raccoon "reading" it to him.  It's still liking to go to Sesame Place, even though he is 9 & 1/2.  It's wanting children's museums, where he can still touch and play with everything.  It's still searching for my hand when crossing the street, even though I have tried to transition to a more age appropriate arm around his shoulders or light hand on his back.  It's getting to keep my little boy for just a bit longer than I should have had him, and I love every precious second of it.  

I do question how much is genetics and how much is autism, by the way.  After all, at age 40, I also still like Sesame Place, think there's no such thing as too many stuffed animals, and heartily share the view that Disney is, in fact, the happiest place on earth.  One of my better exchanges with my husband happened on a Disney cruise, when picking out photos that had been taken by the cruise photographer.  I had my picks in my hand, and he wondered why I hadn't chosen a different, better photo:

Me:  "Because this way we have one with Mickey and one with Minnie."

Danny:  "Sure, never mind the humans in the photo.  We've got Mickey and Minnie." (Insert *that* look.  You know, the one where your spouse makes very clear they think you need to get a grip.)

I think the salesperson may still be laughing.  Also, my husband heartily disagrees about the stuffed animals.

Regardless, there's change in the air this year.  We started seeing it in the classroom.  I've felt him drop my hand as soon as we cross the street.  And then, this exchange a couple of weeks ago:

Brandon and I used to have a "thing" at bedtime when he was younger.  I would kiss him, pull back, and ask, "More kisses?"  He would shake his head yes, and I would keep kissing his face, and maybe his belly.  He was good for three, sometimes four rounds before I stopped.  We haven't done that in a while.  I kissed him, and looked up.

Me:  "Brandon, enough kisses?"

Brandon: "Yes."

Me: "Remember when you used to ask for more kisses?"

Brandon: "Well, I'm getting older now."

Man, did that hurt.  He's used that phrase several times since then.  Yes, Brandon, you are getting older now.  You are headed for your first double digit birthday this year.  It's a double edged sword.  You are showing us maturity in ways that were frustratingly out of reach and very much longed for only a year ago.  And yet, and yet....

There I some things, sweet Boo, that I hope you never outgrow.  I hope you never compromise yourself, never try so hard to grow up and fit in that you forget the things that make you happy.  I hope you always love something as passionately as you love your penguins now.  I hope you always have something that makes you as comfortable and secure as Roscoe and "My Personal Penguin" do at bedtime.  I hope you'll always see the world with at least a little bit of childlike wonder.  I hope you will keep on being happily autistic, and that someday you will find your way to a community that honors that.

And yes, I know that you could care less about Mickey and Minnie.  Someday, a photo with Shamu.  Definitely.

You Should Know That

It's been longer that I thought - so sorry!  Sometimes, life is busy happening and I lose track of time.

A few nights ago, I was helping Brandon get ready for bed.  His "tell" when he's sleepy is obvious; he sucks on his first two fingers and rubs his beloved stuffed raccoon Roscoe's tail back and forth against his nose.  He's been doing this since he is tiny.  It is sweet, innocent, and adorable.  Though I will no doubt be paying for orthodontia because of it someday, I have to admit that I love watching him revert to shades of my sweet little baby boy, with nothing more pressing than a need to be tucked in and read to.  

I needed to get his t-shirt over his head, so I gently tugged his fingers out his mouth, telling him "Hey Boo, I need your fingers out so I can put this on."  He looked at me and said "I do that when I'm tired.  You should know that."

You should know that.  

Wow.

How very many things that covers.  I should know that even though you read at fourth grade level (and possibly above)  your very favorite bedtime story is "Personal Penguin", a board book.  Not only because it features your beloved penguin, but because it is short and predictable and allows you to wind down without placing any demands on you.  I should know that when your health is off, even very slightly, that I will get an e-mail from your teacher letting me know you had an off day because if your health is off, your filters will be low. I should know that I need to explain things like that to your teacher, because you can't do it for yourself yet.  I should know that you need some downtime in your man-cave, and that if I let that happen, you will eventually also ask to go out, or for us to come in and play.  I should know that you don't eat inedible objects to drive us all crazy, even though it feels like that sometimes.  I should know that even though you're bored of the foods you eat, trying new ones is still much too scary for you.  I should know that when we go places, allowing you to lead may not be the most efficient way of seeing something, but it allows you the control you need to make it OK.  I should know that there are all these things that I need to know, so that I can advocate for you until you can do it for yourself.  You should know that I love you, and every single day I'm trying to learn just a little bit more, so that when you say "you should know that", I can say "yes, I do."

Speaking of things I should know, I should also know that Cady knows (and understands) more than I think she does.  Always.  

Brandon has a fixation with gift shops.  Not only does he have a deep need to go into one at each place we go to (assuming one exists), but he has a deep need to come out with a toy.  Each and every time.  We've tried multiple tactics to squelch this, but the end result is usually a meltdown if we don't give in.  I think we're starting to approach the point where he's mature enough to work on this, but in the meantime, I will readily admit to consciously deciding to purchase my sanity.  And that in the interest of fairness, Cady is also allowed to pick out a toy.  Try not to judge me for this one, OK?

We had an interesting gift shop visit while on vacation this summer.  For the first time ever, the kids couldn't readily find something they really wanted.  Brandon was not about to rest until he found *something*.  Cady kept picking things up and putting them down, and we discussed not buying things that we could easily find at home (and probably for a lot less money.)  We talked about waiting until she saw something special, instead of buying a toy for the sake of buying a toy.  For the first time, she chose not to get something.

Later that evening, when I was tucking her in, she floored me.  This is an approximation of our conversation:

"Mommy?"

"Yes?"

"So, I know we go into the gift shops because of Brandon.  You know, it's OK, if we go into a gift shop, and you say that I should wait and maybe not get anything this time, because we're going to go into other gift shops.  It's OK."

I didn't know what to say to that.  I could not believe that my not-quite 8 year old had so thoroughly pegged what was going on.  That she understood enough to tell me that she was now grown up enough to want to be treated fairly, but that she was starting to get that fairly and equally are not always the same thing.  I should know that she gets it, even when she's busy acting like a very typical sibling who might wish we could export her brother to the moon, for no other reason than that he's her brother.  

My kids blow me away all the time, just by being themselves.  You should know that.

Great Expectations

I made it all the way through three weeks worth of school without exploding.  Sure, I would've liked to extend that time by just a bit.  However, when an innocent question leads to an unsatisfactory answer, my Mama hackles go up and I growl.  Loudly.  Let me explain.

The classrooms in Brandon's school are ungraded, but by age he would be in the 4th grade.  His school has an annual back to school night.  Due to a client event, I couldn't attend, and I arranged to meet his teacher on another morning, before school.  We met, I met the assistants and his new OT, I saw the classroom.  All was well.  Then I asked what literacy and math levels Brandon had been grouped into.  Silly me, I thought I knew the answer; I was just checking.  Good thing.  He had been placed in level three math (which I had expected)...and level three literacy.  Um, what? No.  No, no, no, no and no.

Brandon has been reading since he's three years old, and he has always been ahead of his peers in literacy.  His second grade year was a disaster, however, with Brandon struggling with as yet undiagnosed ADHD, and very little learning being accomplished.  He spent more time outside the classroom struggling to self-regulate than in it.  In order to work on his frustration tolerance and boost his self confidence, we made a group choice to have him repeat level two math and level three literacy last year, in a 1:1 setting.  It worked beautifully; Brandon actually accomplished a full year's worth of math, a subject that used to provoke a meltdown by it's mere mention.  Having been told how well he was doing in literacy, I assumed the same of that.  Yeah, I know what they say about assuming things.  What can I say, I had gotten a little too comfortable with my kid actually being happy about academics.  

I exploded.  No way should my boy have been assigned to level three literacy for the third year in a row.  

So, why the level three literacy then?  Well, apparently that was at least partially an oversight.  The group had actually almost completed the level over the summer, and until I got my hackles up, no one took note of this.  OK, even in good schools stuff happens.  I could have rolled with that one, albeit with a lot of grumbling and general pissed-off-ness on my part.  It was the part where they cited his behavioral protocol needs and inability to write that got to me.

Brandon's ability to work in a group is tenuous and newly emerging, but something he himself now desires.  To help foster that, he was introduced to a literacy group over the summer, with a behavioral protocol.  It works like this:  for every minute he is able to attend without off-topic interrupting, he gets a token (in his case, it's a penguin icon.)  After he earns three of them, he gets a brief break and reward, then goes back to the group.  This year, he's so far been able to increase the time to three minute intervals.  To be sure, this reward system takes up a not insignificant amount of adult time, and also causes a certain level of disruption. However, it has NOTHING to do with his level of academic functioning.  

Brandon also can't write.  He has had significant fine motor skill issues all his life, and it is apparent at this point that writing will never be his primary mode of communication.  By fourth grade though, literacy starts to involve a lot more writing.  Brandon's writing challenges are not new.  They have ALWAYS existed.  So...are we going to hold him back for that?  What happens when he still can't write next year?  The year after that?  Are we going to hold him back indefinitely until he can type fluently?  What if that doesn't happen for another year or two?

HELL NO!  I'm not unrealistic.  I know my baby has a long, long way to go.  He's not getting there with low expectations though.  I don't know if Brandon will be capable of college.  I don't even know if he will *want* to go to college.  What I want is the possibility of that for him.  My vision of the future includes one where Brandon has choices.  And he's certainly not getting there if we can't see past the behaviors and the sensory issues and the physical challenges to the very real, very bright boy underneath who will only go as far as we expect him to.  It's time to stop making excuses and doing what's easy.  IDEA says nothing about easy; it says "appropriate".  It's time to raise expectations, and stand back and give him wings to fly with.  It won't be easy, but I'm betting he finds a way to touch that sky.

The Cure! I've Found It!

Let me just get this out of the way and say "Yes, that is meant to be tongue in cheek."  

Autism has been a part of Brandon's life, and by extension mine, for 7 &1/2 years now.  This also means that first NAAR and later Autism Speaks have been part of my life for around 7 years now.  I will admit that, in the beginning, I wanted a cure.  I haven't met a parent yet that didn't start out in that place.  Eventually I got around to defining what I personally meant by the word "cure".  What I wanted was the keys to my son's kingdom, as it were.  I wanted to understand what things made his ears hurt.  I wanted to know what type of classroom he would learn best in.  I wanted to know what caused anxiety for him.  What made him frustrated, angry, and why.  I wanted to have a "real" conversation him.  I wanted appropriate supports and services, so he could succeed.  In the end, what I wanted wasn't really a cure at all.  I wanted a way to ensure a good quality of life for him, which is not even close to the same thing.  

Like most parents of an ASD kid, I've seen Brandon show all sorts of behaviors I didn't understand.  I've been *that* parent, at the other end of a phone from my son's school, trying to figure out why he hit, or bit, or overturned a desk, wondering how if the professionals didn't have an answer I was supposed to find one.  I was determined to try though.

In the trying, I discovered the adult self-advocate community.  I learned that "cure" is very much a four letter epithet for many of them.  I also learned how very much they had to say and to share with NT parents, and how many of them are willing if we would just listen.  I didn't learn what things hurt Brandon's ears, but I learned not to be embarrassed by carrying noise canceling headphones around (heck, I've even used them myself once or twice.)  I learned he got frustrated and angry because the world looks so very different to him than it does to me, and that if I just take a few minutes to help bridge the gap, there is a lot less frustration and anger.  I learned that what I thought of as appropriate supports and what an autistic thinks of as appropriate supports could be miles apart.  I learned that a lazy Saturday at home every once in a while, in pajamas, in his room with his computer, books, and stuffed animals with the door closed allows him to reset himself and ensures smoother days ahead.  Best of all, I learned how to talk with him.   You see, "real" is a matter of perspective.  The things Brandon wants to talk about are very real to him, and important.  When I finally stopped to dignify that, he did, in fact, start talking about the things that were real to me.  I've always loved my son, but now I get to enjoy him too.  He's whole, as is.  I've found the cure.  It's not Brandon that needed to be fixed - it was me.  

I'm not going to claim that every day is a picnic.  We still have plenty of tough times together, when my NT perspective and context get in the way of understanding his autistic perspective and context.  I'm also a parent, and he's a kid, and he does plenty of things every kid does that invoke the wrath of parenthood.  

I'm also not going to claim that autism is always a blessing.  I'm not Pollyana, and some days it's a right pain in the ass.  I don't enjoy seeing my son struggle.  I don't enjoy the constant need to focus on Brandon's deficits in order to justify his services.  There are some days where I fail miserably at bridging the gap between us, and one of both of us ends up in tears.  But none of these things ARE my son, and they are my problems, not his.  

If you're familiar with Autism Speaks at all, then you also know this growth comes at a price.  You see, I no longer like the word "cure" either.  My son is not a tragedy, and he doesn't need to be cured.  What he needs is to come of age in a world that is ready to accept him.  It's a tall order.  You see, if the "nation's leading science and advocacy organization" can't accept him as is, how can we ask anyone else to?

I've been asked why I still volunteer for them.  I still believe in the research, because I believe that for some of the symptoms of autism, we can find ways of making it better.  I believe in the advocacy work that goes on in the national arena.  I believe that in the next few years you will see them focus much more on adult research and adult quality of life issues.  I believe that if people like me say it enough times, and say it loudly enough, that they will understand that in so many ways the cure they're looking for is right in front of them, if only they would listen to the adult self-advocates.  It doesn't matter if what they has to say comes from their mouth, their computer, their iPad, or their Dynavox.  

Self-advocates speak.  It's long past time to listen.

My Son, the Ornithologist

If you're the parent/friend of parent/family member of an autistic child, and you have a sense of humor, you recognize that our children are frequently quite funny.  If you are the parent/friend of parent/family member of an autistic child and you don't have a sense of humor then, well...this blog post is probably not for you.

On our aforementioned vacation, we did go other places besides Sesame Place.  One of them was the Academy of Natural Sciences in Philadelphia.  Really neat place for science and nature loving kids, kind of like they took the American Museum of Natural History and shrunk it, except without the crowds and lots of really helpful people to tell you about the exhibits.  

I also may have mentioned once or twice Brandon's love of animals.  Particularly penguins.

By one of the exhibits was a lovely young woman, equipped with a set of bird feathers and bird bones, all ready to talk birds with the kids.  Brandon sat down, and they examined the feathers together, discussing the shape and feel.  Then they got to the bones.  The conversation went something like this:

Woman:  "Pick up the bones.  Feel how light they are?"
Brandon: "Yes."
Woman:  "That's because they're hollow.  All birds have hallow bones.  That's so they can fly."
Brandon: "All birds don't have hollow bones."
Woman: "Yes they do.  What bird doesn't have hollow bones?"
Brandon: "Penguins don't have hollow bones."
Woman: (Looks at Brandon.  Doesn't have a clue how to respond.)

Helpful parent that I am, I walked away so I could get hysterical laughing somewhere not directly in front of her.  

In case you're wondering, or you haven't already gone to Google to fact check (and if you have, congratulations - it's more than our politicians are doing!), he's correct.  He also informed us on the car ride home that kiwis, emus, ostriches, and road runners don't fly, and also don't have hollow bones.  We never did establish whether or not road runners actually say "Beep!  Beep!" though.

I love this boy.  I particularly love that he's capable of giving us the type of moments that all kids do, where they are unintentionally hilarious just by being themselves.

And if you're one of those parents/friends/family members of a child with autism that think nothing about autism is funny?  Loosen up a little bit.  Look for these moments.  Both of you will be a whole lot happier for it.  

Elmo's World

Hi there - sorry for the long absence, but I've been on vacation.  Betcha' can't guess from the title where I went ;0)

Summer is, historically, difficult for Brandon.  He has periods of being out of school, and even his six weeks in school are different - different schedule, different activities, different staff members.  Cady is in camp until the end of August, so we don't get to go on vacation as a family until the very last week before school starts again - which means we always go on vacation when Brandon is already many weeks into struggling with different.  Our vacations are a learning experience. Progress is measured in shorter/fewer meltdowns; in Danny and I feeling somewhat less exhausted when we return home.

Sesame Place has particular significance for me.  We've been there multiple times, starting when Brandon was three.  That first trip was wonderful - Brandon went on the rides, played in the water, hugged the characters.  He loved every minute of it.

Fast forward three years.  Brandon didn't want to go near any of the characters; he screamed if we tried.  He would only go on a few rides, and he mostly wanted to play in the sand and the tidal wave pool.  He was still enjoying himself, but was much more limited in where he would go and what he would do.

Fast forward another two years.  Brandon didn't want to go on anything; he just wanted to go straight to the tidal wave pool.  Trying to get him involved in anything else resulted in huge, hysterical, aggressive meltdowns.  Danny and I split up, so that Cady could spend time in the rest of the park.  We spent very little time with all four of us together.  It was, frankly, one of the lowest points in my parenting history for me.  I spent most of the time in the park near tears, wondering how and when Brandon had become so rigid.  Nowhere else was the evolution of Brandon from a relatively flexible child to a child bound by the fears and anxieties unique to his brain so starkly clear.

Of course, I hadn't yet learned the crucial questions to be asking.  I was still wondering how to "fix" this, how to make Brandon less rigid.  It wasn't until shortly before we left for vacation this year that I stumbled across the FaceBook page of Karla Fisher (Karla's ASD Page).  For the first time, I learned to ask myself the right questions:  How can we best support Brandon so that he - and by extension the rest of us - has a good time?  What things are truly important, and what things that we ask of him simply siphon off energy that he could be putting to better use elsewhere?  How much can he reasonably handle in any given day, and where are we prepared to adjust if need be?

Our vacation wasn't perfect, but it was so much better.  And the very best day of it?  

You've got it.  Sesame Place.

We were able to coax Brandon on to most of the rides.  We have character pictures with all of us for the first time in six years.  We sat and watched the parade, more than once.  Meals were reasonably pleasant (well, as pleasant as they get in an amusement park fast food place.)  Best of all, we stayed together as a family almost all day, from 11:30 until 4:30, and then we only split up for an hour.  Brandon spent it in his beloved tidal wave pool, and Cady and I took on the water slides that Brandon's swimming skills aren't strong enough for.  This time, the tears were from sheer happiness.  

What changed?  Well, both of us, really.  Brandon has matured this past year, and grown bolder in ways that I used to pray for.  He is also communicating more, so I'm guessing less at what he is thinking.  For my part, I've started to adopt a "less is more" way of thinking.  A shorter, successful day is worth more to me than a longer one ending in a meltdown.  We ate dinner in the park instead of at a restaurant, which seemed to solve multiple end of day issues.  I'm learning to read Brandon's cues better, to know when he can be pushed just a little bit past his comfort zone, and when we've reached a hard limit.  I've learned to find ways to try and ensure Brandon's success.  

Sesame Street is a place of learning for young children.  Given that I'm in my infancy of learning how to truly understand my son, it is just so appropriate that our first breakthrough together would happen in Sesame Place.  I'm looking forward to so very many more.