'Tis the Season...

...for growth!

As parents, we all measure growth in our children.  Physical growth, of course, but also emotional and educational growth.  I'm a teacher, which means I am in the business of constantly analyzing educational growth, and of course I examine my own child with the same analytical eye.  The difference between me and other parents is that a success for Ben in my mind is a daily expectation for other kids; events that are a huge accomplishment for Ben are not a big deal for most kids and are not reason for celebration.

One of the reasons I began this blog was to have a place to celebrate Ben-- his uniqueness, his strengths, and his growth.  So here goes:

Ben's fine motor skills are severely delayed.  At age 4&1/2, his were assessed at 18 months.  That was hard to swallow.  We work on fine motor skills.  We string the beads and play with the blocks and the Play-Doh and color with the triangular crayons just like we are supposed to, and we started doing that right when we were supposed to, but his fine motor skills are still delayed.  It's one of the areas Autism shows up the most in my child.  At 5&1/2, he still cannot write his name unassisted.  BUT!  This year, he was able to place all of the tiny candy pieces on the cookies and he placed all of the candy on the roof and walk of the gingerbread house and all of the little dots on the gingerbread man and tree!  Last year, the cookies he decorated looked nothing like that.  I so should have taken pics last year for before and after, but trust me, the difference is huge!

Do you see that glorious mess?!  Musical instruments, pirates, firemen and fire truck, dinosaurs, LEGOs, etc?  Last year, Ben obsessed over his musical instrument toys.  And that's all.  That's all he touched for days.  This year, less than 24 hours after opening his presents, he has played with almost every single thing he received, at least for a few minutes.

In retrospect, one of the early signs of Ben's Autism was his tendency to obsess.  Lights and fans had to be on all the time.  He began pretending to cook at age 2; everything became a spoon and pan and all he wanted to play with were spoons and pans.  At age 3, this obsession changed to musical instruments.  Everything became a musical instrument, he wanted to spend hours in front of You Tube watching people play musical instruments, and all he wanted to play with were musical instrument toys.  Occasionally, he would play with a dinosaur or a car, but after a few minutes it would become a "dinosaur flute" or "car harmonica".  He began speaking at 3&1/2 and a few months after he spoke his first (retained) words, he could name over a dozen musical instruments.  Now he can name them all, even lutes and balalaikas and other things I did not know existed until Ben became obsessed with them.

A few months ago, an assessment by his private OT showed this might be changing.  She reported that he no longer reverts to pretending to play an instrument in order to avoid therapy.  We began noticing that he played with LEGOs and other things as much as his instrument toys.  And now I am spending my morning joyfully watching him move from toy to toy: fire truck to pirates to drums to Legos to binoculars to pretending to be a guitar-playing pirate.

I do not have a picture to accompany the next benchmark, but it might just be the most important one.  Ben made it through all of Christmas day--Santa gifts, Mommy gifts, gifts at my parents' house with grandparents and aunt and uncle, and the family gathering at my aunt's house with only ONE instance of a mini-meltdown (wanting to be a pirate instead of opening the rest of his gifts) and one instance of isolating (in the back entryway about 8 feet from the rest of us)!  It may not seem like a big deal, but it is HUGE!

Another early sign of Autism that only registers as such in hind-sight is his need to isolate himself from noise, crowds, and over-stimulation.  On his 2nd birthday, Ben freaked out.  He cried, screamed, went into his room, and refused to be a part of the party.  He did not open his gifts.  He did not blow out his candles or eat his cake.  He sat in the recliner with his dad reading books until everyone left.  Then he was fine.  I blamed it on not having taken a nap and on being two in general, but about 6 months later at my dad's 60th birthday party, he went as far back into my parents' house as he could and stayed there by himself.  He would have nothing to do with the party or the people, even family members he knew well.  He just wanted to play with a pan and a spoon by himself, completely away from the crowd and the noise, and attempting to draw him out led to a colossal meltdown. 

Yesterday, I watched him negotiate his day and the commotion and disruption to his routine mostly with ease and was so relieved there are no words to describe it.  He occasionally sought pressure to help him deal with sensory overload, but other than the one example of resisting opening packages, he handled it all like a champ.  I have every hope and reason to believe that he will continue to grow and learn to navigate the world, and I am so happy for him that he was able to enjoy the holiday instead of hide from it.

I hope you all had a wonderful holiday celebrating everything you celebrate, and I wish everyone a peaceful new year full of happiness and growth!

You Can Do Anything

A few weeks ago, a coworker sent us all the link to a short film, The Butterfly Circus.  It's one of the most inspirational things I have ever seen.  She showed it to her students on one of our "college days", I suppose to inspire them to do the hard work that earning a college education requires.  And I can totally see that.  One of the most important beliefs to have as a teacher is that your students can overcome any challenge and "do anything".  I believe it.  I have seen it.  And I know I will see it again.

Of course, my precious boy is always on my mind and in the center of my heart, and he was the first person I thought of when I watched it.  I have always been focused on the idea that Autism should not and will not stand in Ben's way.  I am determined not to let it limit him and his potential to do anything he wants.  I know that he can and I believe that he will.

The film is 20 minutes long, but it is completely worth your 20 minutes.  I promise.

The Butterfly Circus

Unsolicited Advice

Something happened a few weeks ago that I fully intended to post about but didn't have the time to do so, which is the story of my life lately.  It has sat there in my brain, kind of hanging out for awhile, and every time I focus on it and really think about it for a moment, I get worked up about it again so here I am.  That's partly because an event like this is very much a part of the experience of raising a child on the spectrum, a child with any kind of special needs, and quite possibly any child at all.  It's also partly because it's an example of how raising Ben has changed me as a person in many fundamental ways. 

A few Saturdays ago, Ben and I went to the local super center to do our grocery shopping.  Such an errand creates a medium-to-high level of anxiety for me because I don't know how Ben is going to handle the noise, crowd, and being stuck in a cart for up to an hour.  I place it on the picture schedule so he will know ahead of time, discuss expectations and what "big boy words" to use if the store is too noisy or if he needs something, and I pack fidget toys, a juice box, snack, and mints in my purse to make sure he has the distractions and comforts he might need.  It's never just a matter of getting in the car and going, as it always requires preparation.  Sometimes he handles it perfectly well, sometimes he handles it mostly well with a few outbursts, and occasionally he screams the whole time and punctuates that screaming with throwing things.  There is no way to predict the latter and even though I always try to head it off, sometimes there is no way to do that either.

On this particular Saturday, he did mostly well until we were in a particularly crowded aisle of chatty people, and I swear someone cranked the Christmas music up a few notches.  Ben lost it.  "It's too loud! he screamed, while hitting the side of his head with his hand and simultaneously kicking off his shoes.  He swiped at me, threw a roll of paper towels out of my cart, and howled.  I covered his ears with my hands and began telling him that it would be okay and we could put the hood up on his jacket to help, when some lady I have never seen before in my life wearing a horrendous cat sweatshirt stepped up to me with a condescending smile on her face, and said, "Your son is throwing a tantrum."  I just stood there while my jaw dropped.  My child was throwing a tantrum?  No kidding, lady!  She continued, "This is what happens when we try to be our child's friend instead of his parent.  I recommend strict consequences for behavior like this."  And then she took a step back and looked at me expectantly.

I don't know what the hell she was expecting, but I'm sure it wasn't what was going through my mind because first of all, did she really think I was not aware that my child was throwing a fit?  Did she really think I needed that pointed out to me while his shoes were in the floor and he was screaming?  And second of all, who the hell asked her?  It's not like he is the first child to ever throw a fit in Wal-Mart, and the fact that he did indeed throw a tantrum does not mean he does not have consequences for his behavior.  Having sensory integration deficits is not a chosen behavior, and that's what I suppose I should have told her because she was clearly clueless that he has Autism and probably has no idea what that is, but my brain was so full of profanity in that moment that my filter (which isn't a very good one) was working double time to control my mouth, and instead all I could do was glare at her while retrieving Ben's shoes.  Thankfully, some other lady quietly put my paper towels back in my cart (if I had picked them up myself, I probably would have thrown them at the cat shirt lady), so I pulled Ben's hood up over his head and pushed my cart out of that aisle as quickly as possible.

This is not the first time such a thing has happened.  Ben and I have been stared at and whispered about (and even laughed at) at restaurants, parks, Mommy and Me gymnastics, etc, but never had I encountered someone who would dare tell me I was doing it wrong and that they knew better about my own child than I did.  Part of me regrets not telling her off and part of me wishes I had been able to stop and educate her, not only about Autism and my child but also about that judgemental cloud she lives under that caused her to say what she said and make a rough moment even worse, for all the good it might have done.  When I say that Ben changed me, I mostly mean he changed this.  Not that I was ever exactly the cat shirt lady, because I never would have told someone how to parent their child, but I would have thought it.  I would have felt critical and I would have thought, "Parents don't discipline their children."

I am no where near perfect and never will be, but raising Ben has taught me that there is always another side to things; that living under a critical cloud blurs my own life.  I have had to learn to look at my child in a more positive light and to believe that he can overcome his obstacles to do whatever he wants and be anything he is willing to work toward.  I am able to see my students in a different light as well, with that same hope for possibility.  There is more sunshine in my life now, and I am a far more positive person than I was.  As frustrated as I get with Autism sometimes, I needed Ben.  I needed the change.  

In response to the rude cat shirt lady, a friend suggested I get Autism Awareness cards to hand out in similar situations.  It's a good plan and a good reaction, much more acceptable than throwing paper towels or unleashing unfiltered profanity.  I browsed them online and didn't find any I completely liked, so I borrowed bits of a few and added my own line.  Below is what I came up with.  Feel free to use the wording if you have a need:

My son has Autism                                         

When a person with Autism feels overwhelmed

by his sensory integration deficits, he may behave

in an unpredictable manner.  His current

behavior is a reflection neither of his intelligence

and worth, nor of my parenting.  Your patience

would be appreciated.  For more information,

please go to www.autismspeaks.org

Wherein I Cram a Week Into One Post

Whew!  This has been a big, busy week and I have been sick for most of it with the worst UTI ever.  I am thankful to be feeling better and for all the help I got from so many people, and I am thoroughly dreading tomorrow at work.  I already have a list of things to do tomorrow as long as my leg and I haven't even seen my desk yet.  Boooo.

In Ben news, he had an awesome Halloween and was healthy enough to celebrate it.  Last Sunday, we carved pumpkins and he very happily scooped the guts out of the pumpkins.  This is fantastic sensory news, as it didn't seem to bother him at all.  He also seemed very happy that Mommy and Daddy were both involved, and it was a fun activity.  He chose a "ghosty face" for the white pumpkin and a "happy jack'o lantern face" for our big orange one.

On the day of Halloween, he happily donned his fireman outfit and was very excited to trick-or-treat.  We went to some family members' homes first and then we did two blocks at home.  There weren't very many porch lights on, but the people who did participate were sweet and generous.  Ben had a blast, and he nicely said "Trick or treat!" and "thank you" at each house, though sometimes in the wrong order.  Oh well.  He was the cutest fireman ever and got lots of smiles and compliments.  He had a bit of anxiety in places when there wasn't a porch light on for a few houses or when he wanted to carry a big sharp stick and we wouldn't let him for safety reasons.  He also had a bit of a meltdown when we decided to go back to the house because it was getting dark, but overall he did very well.

Then Tuesday rolled around and we headed to a surgical hospital at 7 a.m. so his E.N.T. could remove the blue Play-Doh from his left ear.  I know.  Yes, he had Play-Doh in his ear.  I think it just must have been on his finger and he scratched his ear or something, but it was close to the eardrum and couldn't be tweezed out so it had to be removed while he was under.  Too bad he couldn't just sneeze it out like he did the LEGO he stuck in his nose, because while this procedure was short and relatively painless, it was expensive.  The surgical hospital was great with Ben, though, and he only had a few issues.  He was a doll until it was time to put on the little gown, and then the screaming began.  They solved that by letting him wrap up in a blanket with his undies and socks on instead, and that helped until a female nurse asked him to get in the bed so she could wheel him back for the procedure.  He began screaming and crying that he wanted "a man to do it" and they quickly found a very nice male nurse who carried him back without incident.  I don't know why he does that sometimes; maybe because he gets it set in his mind that it will be a man, and he doesn't change his idea about things very easily.  At any rate, the procedure went well, the Play-Doh is out, and other than being a bit drowsy and dizzy from the gas, he was fine.

Fast forward to yesterday, and I discovered that he lost his first tooth at some point this week.  He was digging in the back of his mouth and I felt around to see if he was getting a molar or something, when I saw that a lower front baby tooth was gone.  Gone!  There is just a little dark spot on the gum where it was and a permanent tooth is pushing up behind it.  I was heart broken.  I had a special book to read with him for this occasion (Bear's Loose Tooth by Karma Wilson), a special Tooth Fairy box Noni got him, and had big plans to celebrate it and be the Tooth Fairy.  I also felt like I had messed up.  How did my baby, my number one most important person, lose his first tooth and I had no idea?  I know I was sick last week, but still, I am a bit upset about it.

Fortunately, he was not traumatized by it as I had feared he would be and I don't think he even noticed.  I showed him his new tooth in the mirror and showed him that the one beside it is loose now too, but he really couldn't have cared less until we read the book and dug out the box.  Now he is super excited and wants the other one to fall out right now!  Hopefully, we'll catch this one. It was a busy week, and I am proud of what a big boy he was at many points of it.  He was also very sweet to me while I was sick, and I just couldn't ask for a better boy.  I really wouldn't change a thing.

Sinking

This post isn't about Ben.  It's about me.

Something is happening to me that I don't understand.  Emotionally, I am sinking further and further into some kind of unfamiliar dark and gloomy pit that I can't seem to claw my way out of.  To say I feel sad is an understatement of huge proportions.  I cry.  A lot.  I don't want to get out of bed in the morning.  I get angry quickly and feel horrible about my anger afterward, even if I had the right to feel angry.  I snap at people who don't deserve it and get way more upset about little things than I should.  I get a tight feeling in my chest and I feel absolutely helpless and hopeless sometimes.  And right now, just trying to write about it and explain it, I am crying so much I can barely see the screen.

And I have no idea what to do about it.

A very supportive little FB group I'm in has mentioned that every mom of a kid with Autism suffers from some kind of depression.  That statement completely caught me off guard and I found myself holding my breath as I re-read it.

See, I don't get "depression".  I am Danica, and I am too strong for that kind of "crap".  I deal with things and buckle down and take care of business and move on and solve the problems and figure it out, even if that means cutting people out and off or accepting that sometimes things and certain people just suck and I have to move past them.

At least, that's what I thought I did.

Right now I'm too weepy to do any kind of buckling down or moving past.

This is the point where I need to clarify that I love my son more than anything and feel blessed to have him in my life.  I love his smiles and laughter, his funny ways, his sense of humor, his imagination, his loving little spirit, his determination, and the fact that I am the one he still needs and snuggles with when the going gets tough for him.  He is my most important purpose and priority and he is totally worth the effort, stress, and anxiety that comes along with an Autism diagnosis.  I'm worried about not being a good enough parent, though.  But that's always a worry.

I also feel I need to reassure everyone that you will not see me in the newspaper headlines.  I will not do anything crazy or horrible, and  no one will call you to interview you about whether or not you knew I was off my rocker.  I promise.  I'm not so bad off that I can't see this happening and that I don't know something is up.

I have been steeling myself against the possibility that it may be more than feeling a little blue and that I may need to mention this to my doctor, should I ever get a chance to do that.  I will surely have another sinus infection soon and that may give me the opportunity.  It doesn't sit well with me, though.  Not that I judge others for needing meds or help, but I simply thought I didn't have "that problem."  I'm not supposed to have it.  I don't have time to have it, and I certainly don't want to have it.  I am learning, though, that I am not always so strong as I'd like to be.

Worth a Thousand Words

Yesterday, Ben's daycare sent home a photo that made me stop in my tracks, and if I need to express any one particular thing about Autism, this picture summarizes it perfectly.  It shows so much more about how Autism affects my child than I could ever effectively write or say.

Unfortunately, I can't share it with you.  There are other children in the picture whose parents I don't know, and I do not feel comfortable showing their photos here, because I would be a bit ticked if perfect strangers put my kid on their blog.  You know, do unto others and stuff.  And I can't crop them out because they are crucial elements in the picture.  Without them, the difference isn't there.  So, we are all just going to have to make do with whatever words I can scrounge up to describe a picture that most accurately illustrates Autism that I can't show you but need to share with you.  Irony, anyone?  Or is it not ironic, but just confusing?

At any rate, imagine in your mind fourteen five-year-olds dressed in florescent daycare shirts all posed around an inflatable pumpkin at the pumpkin patch.  They have been told that this picture is a souvenir of their field trip for their parents, and everybody stop picking your nose and say cheese.  Thirteen of those children are smiling brightly, showing all their teeth.  One of those children has that "Who farted?" expression.

Then there is Ben.  Ben is in the middle of everything, wearing the same shirt, sitting right in front of the inflatable pumpkin, with kids on either side of him and slightly in front.  He is not looking at the camera.  He is sitting sideways.  He is not looking at anyone but is instead contemplating something he is holding in his hand, perhaps a leaf or piece of hay.

He is with the others but separate from them, all at the same time.  He is in his own world right in the middle of theirs.

This is what Autism does.  This is what Autism looks like, at least from my experience.

Actually, there was a time a few years ago when he wouldn't have even been in the picture.   He wouldn't have been able to tolerate sitting so close to other kids, though he has always been affectionate with us and has sat with us.  This shows improvement, and I am thankful for it, but the difference and the struggle are so evident in this picture that I tear up when I see it.

What I hope you will take away from this little experience of mine is that Ben doesn't want to be alone, but because of this syndrome, he just is.  He is separate, apart, and different, but if someone takes the time to make the effort required to enter his world, he is well worth it.  I promise.

Please reach out to children with Autism and please teach your children to reach out to children with Autism or any kind of difference, instead of just ridiculing or ignoring them.  They are worth it.  I promise.

Back to the Grind

Summer time is pretty sweet and laid-back around here.  Ben and I fall into a routine of sleeping later, playing, the park, the DH Discovery Center, the zoo, feeding ducks, and splashing in the kiddie pool.  We did do extra therapy this summer (two sessions of OT, one of ST, and one of PT each week), and we do keep a routine so that he won't get upset and feel distressed, but it is nothing like his school routine.

Ben's school routine this year consists of Daddy driving him to school, riding the bus at 1:30 to his daycare, and then one of us picking him up from daycare.  Wednesdays include OT.  He also attends just daycare for a week before school starts while I am at in-service.  Getting back into the routine has always been difficult for him, even when he didn't have as many transitions as he does now, and the first few weeks had always required us to pry him off of the floor, kicking and screaming, and drag him out of the door each morning, only to have to leave him at school or daycare while he sobbed, screamed, and took off his shoes.  After a few weeks, he calmed down at home but then would still have the fit at school.  It was painful at best, and we all dreaded Ben's morning transition.

But this year has been different!  Thank goodness!  He handled the first week of daycare like a champ, no fits and no problems!  He was clingy with his dad the first day of school, but handled it like a champ as well.  We are now officially three weeks into school, and mornings have been very smooth, except for an occasional clothes issue.  I never imagined it could go this well.

Was it magic?  Did I find a magical fairy wand to wave at Ben to make mornings better for him?  Unfortunately, no.  If I had a magical wand, everyone would know because of all of the frogs suddenly hopping around.  We did, however, find some tools and tricks of the trade that have made school and morning transitions much easier for Ben.

After Ben was diagnosed through the school district (after our original private diagnosis), they enrolled us in their Parent In-Home Training program, and we were blessed with visits from a wonderful PPCD teacher, Ms. D, who introduced us to social stories.  Social stories are little home-made books that show Ben doing something, one step at a time.  Each page will have a picture taken of Ben doing one step of a process that is described in a single sentence.  They can be spiral bound or put together with rings from an office supply store.  We have separate ones for pottying, hand-washing, getting dressed, picking up toys, going to school, going to daycare, eating in the cafeteria, etc. 

Want to know a secret?  At first, I thought this sweet lady was crazy.  I could not see how this was going to help my son.  Despite the fact than Ben loves books, I just could not buy into the idea that he needed a book to show him how to potty or go to the cafeteria.   We had books about pottying, after all.  "The Potty Train", "The Potty Book for Boys", "Potty Time", etc, and they had not done a bit of good, so I certainly did not believe these little construction paper photo books were going to make a bit of difference for Ben.

Until they did.  Because they really, really did.  Being able to see himself doing the scary and/or confusing process  step by step has made a world of difference for him.  His self-help is gradually improving, and it has helped him with going back to school and daycare and falling back into that routine.

Another tool we are using (that I was also skeptical about) are picture schedules.  Ben's teacher uses them at school to help the students negotiate their routines and to teach them how to transition from one center and activity to another.  Our picture schedule at home consists of a piece of laminated card stock with self-stick Velcro on it.  Picture symbols representing pieces of Ben's day have pieces of opposite Velcro so they can be easily put on and removed from the schedule.  We have generic symbols for pottying, dressing, eating, a school bus, picking up toys, etc, but we also have little photographs of me, his dad, my parents, school, daycare, our vehicles, and his therapy clinic.  Each evening, Ben and I sit down together and arrange his picture schedule for the following day, and then we go over it together the next morning.  He also likes to look at it with his dad when he comes to take him to school.  It's not a magic wand, but it does help him understand and deal with the parts of his day better than I ever imagined it would.

We also visited his daycare a week before he returned to meet his new teacher and see his new classroom, and also to take pictures for a social story.  And we attended the meet and greet at his school to visit his teacher (he will have wonderful Mrs. S. again just like last year when he began this school in January).  Mrs. S had readied his cubby and desk so that he could see them.  Last May, she had also sent home a social story about his new, longer school day and the additional situations of lunch in the cafeteria and the routine that will follow, and she really deserves a great deal of credit for how well Ben handles school now.  I believe her classroom is a much safer and more comfortable environment for him than his old classroom at his former school, and I do believe that is part of the reason he does not fight it or dread it so much.  We are really fortunate to have her as Ben's PPCD teacher.

I also involved Ben in choosing his backpack, lunchbox, and school supplies, and we had daily conversations about returning to school, as well as reading children's books about going to school (Berenstain Bears, Curious George, "The Kissing Hand", and a new Skippyjon Jones story "Class Action") and, of course, the helpful social stories.

I am very proud of Ben and the growth he is showing this year, and I am sooooooo happy that he is no longer so upset by school that he needs to fight against going.  I am learning to try tools before being skeptical of them, because you just never know what will help your child until you try it.  But if you see a magic wand lying around somewhere, let me know.  Ya know, just in case someone needs to be turned into a frog.

A Questioning Boy

Ben is asking questions!

"What does a squirrel say?"

"What are you going to do after I go to sleep?  Are you going to play?"

"What song is that?"

"Where are we going?"

"What is a solar system?"

"What are we going to do today?"

"Where is Daddy?"

"What are you cooking for me?"

"What is that?"  (Which started out as, "What that is?" and was so cute I could hardly stand it.)

And he always asks these questions (and many more) with this look on his face that is a mixture of curiosity and amusement, like "A ha!  I now have a way of obtaining information from you!  Over and over again!"

Why is this significant, since 'all' kids ask questions? 

Because I was afraid he wouldn't.  Ever.  I have mentioned before that Ben didn't talk until he was 3&1/2 and that, when he began talking, there was an explosion of words and sentences.  We went from no verbal communication to a ton of it in just a month.  But there were no questions.  There were lots of words and sentences, but even when he wanted something he would say, "I need juice," for example.  We modeled questions and tried to prompt him to say, "May I please have some juice?" and sometimes he would phrase it that way to ensure he got what he wanted, but he did not form questions on his own until now, almost 2 years later.

I was so thrilled he was talking that I didn't give this issue much thought until his diagnosis last summer, but when I began to read up on the subject I discovered that many children on the spectrum never ask questions.  Often, they are so locked in their own world that they don't ever realize or become aware that they can ask questions to get information, and sometimes they aren't even aware of and connected to others enough to want information from them.  This is when I began to worry about Ben's lack of questioning.  I longed to hear the endless string of "Why?" questions that cause some parents to complain.  I longed for my child to be curious enough to reach out for answers, and I was afraid he would not be.  Ben is fairly high-functioning, but sometimes the Autism slaps me in the face.  Sometimes, it's visible and undeniable.  He didn't ask questions when other kids his age were full of them, and that was clear and alarming.

This question-asking, as simple as it may seem, gives me a huge amount of hope that he will NOT be limited by this syndrome.  It gives me hope that he is connected to other people and that he is present and aware here in the world with the rest of us.  He is reaching out to others for information that he wants, and he makes eye contact when he does it.  He now has the ability to reach into the world and connect to it and to everyone else, and that reassures me so much there aren't words to describe it or measure it.  A simple question from him gives me hope that he will be able to complete his education and go to college and have a career he loves and sustain relationships with others.  It gives me hope that this is the tip of the iceberg and that his communication skills will continue to flourish.

He is not yet asking all of those "Why?" questions, but that may very well be next.  I welcome them and look forward to answering every single one without complaint.

An Act of Kindness

A few months ago, I posted about a very large, messy accident Ben had involving a Pacific Ocean of poop in one half of my home and then, a while after that, I posted about our long adventure with potty training.  I briefly mentioned borrowing my parents' carpet cleaner to cope with the messes this adventure often left on the carpet.  Today, out of nowhere, I was given the gift of my very own fancy, powerful, glorious, brand-new carpet cleaner.

The most surprising part of this gift is that it did not come from my doting parents or my generous extended family who often thinks of us and gives us nice gifts (like Ben's new black ocarina that he is ever so fond of--thanks Aunt Judy!), but from someone who has never met me or Ben.  This person knew my mom in high school and reads my blog about Ben, and she very thoughtfully and sweetly decided to give me a carpet cleaner that she had bought but never used and had never even removed from the box. 

I never know when Ben will have an accident.  They generally happen at an inopportune time, but he can't  help that.  He is getting better about potty training, but those accidents still happen from time to time.  He is also still struggling with his motor skills, which results in messes as he spills things.  Once, before he became verbal and couldn't communicate his wants and needs with words, he pulled a large pitcher of iced tea from the fridge to show me he wanted some and accidentally dumped the whole thing on the carpet in the dining room one hour before his birthday party.  And, of course, there was also the incident of the perfectly straight black crayon lines.

My parents have always willingly loaned me their carpet cleaner and have allowed me to hold it hostage keep it for long periods of time, but now they can keep theirs and I will have one whenever I need it for crayon, iced tea, grape juice, spaghetti sauce, poop, chocolate Carnation Instant Breakfast, and whatever else might happen to land on the carpet.

To the person who gave me this gift:  thank you for helping to make my life easier and taking some of the stress out of helping Ben with his struggles.  I appreciate your thoughtfulness and generosity more than I can express, and I am very touched that you thought to give me such a big gift that will help so much around here.  Thank you for thinking of us, and thank you for your kindness.

"Different, not less."

Since it is summer break, I occasionally have a bit of this enigma some people call spare time, and in order to spend some of this glorious spare time, Ben's dad rented the movie Temple Grandin and we finally got to watch it.  I have read articles by Temple Grandin and watched her speeches on line, but I had not had the chance to see the movie until now.

I am not a professional movie reviewer, and my taste in movies is probably questionable at best, but you should really see it if you haven't.  You really, really should.

If you aren't familiar with Temple Grandin, she is a woman with Autism whose mother was told to institutionalize her when she was diagnosed at the age of four in the 1950's.  The doctor called it "infantile schizophrenia" (which really made me angry) and thought that children with it could never talk or take care of themselves or learn.  Her mother (played by Julia Ormond in the movie; Claire Danes plays Temple) refused to follow this advice, worked tirelessly with her on speech, manners, rules, and many other issues, and had Temple attend a boarding school and then college.  Temple is very successful; she has earned her PhD in animal science and is a professor at Colorado State and has famously redesigned slaughter houses to create safe, humane, environments for the animals that are also more efficient and has written many books about that and also about Autism, including The Way I See It.  She is an inspiration in herself, but this movie is really something.

I cannot get over how well it was done, and how thoughtfully she is portrayed, both as an awesomely successful woman and as a person with Autism.  It shows her social awkwardness, her differences from other people, the bullying and teasing she was subjected to for being a "freak," and the way other people couldn't understand her interests and focus, but it also showed how she thinks in pictures by presenting a series of photographs to represent that and it amplified different sounds to show what would be uncomfortable and frightening to her.  It showed her sensory issues, like the "hug machine" she designed and built for herself because she needed the pressure of a hug to calm herself but couldn't tolerate human touch, and also her inability to eat food with texture, other than that of yogurt and jello.

It also showed how much of a difference small gestures of kindness by others made to her life.

I spent a large part of the movie comparing her to Ben, for some reason, perhaps because I am constantly trying to understand the differences in symptoms and gauge Ben's.  There were a lot of differences because he is very high-functioning and she is more classically Autistic, but there were a great number of similarities, too: the intense focus and inability to be side tracked, the lack of understanding of social cues, and the need for pressure, which Ben satisfies with back rubs, a bean bag chair, or his weighted blanket.  But I absolutely began to cry during the scene of the movie where she leaned toward her mother without touching her so her mother could hug her.

Ben does this.  Not with me or his dad or his grandparents, but he definitely does it with people he doesn't know as well or see as often.  Ben has always been affectionate and loving, always, but with less familiar people, he is more guarded in many ways.  He also gives what we call "head kisses."  If you ask him for a kiss and you are not immediate family, he will most likely lean toward you with his head down so that you may kiss the top of his head.  He complies, but in a way that is comfortable for him.  I don't know why that scene made me cry, maybe because it was at the end of an emotional movie, or maybe because it reminded me so much of my sweet Ben, but it did make me cry.  The movie as a whole gave me a great deal of hope for Benjamin.

See the movie.  It's incredibly well done, Claire Danes does an outstanding job, and it is a very helpful tool for spreading some awareness that people with Autism are different, but definitely not less, than others.

The Long and the Short of It

Hi!  I haven't been here in awhile, despite my good intentions.  It's just that when school let out I lost my motivation.  I'm trying to find it, but I lack the motivation needed to do so. Ha ha.  Ha.  I see Canada and Russia have visited this little blog quite a bit.  Other countries too, but not as much as Canada and Russia, so hello there to them. 

You know how when you find out you are going to be a parent, you read all of those books about all of the things you should worry about when you try to raise your child?  And you know how those books tell you there are BILLIONS of things to worry about?  Like what might happen to your child's brain if you don't nurse them until they are old enough to tell you they would prefer a juice box, the two hundred kinds of harmful plastic that everything in the world is made with yet will give your child cancer if they use a sippy cup made with it, and the lead paint that used to be on your window sills but was scraped off twenty years ago?  Come to find out, they managed to leave out some things, like SHORT SLEEVE PHOBIA.

Sleeves, specifically short ones, caused quite a ruckus around here for quite awhile.  Ben was used to wearing long ones, so when the Panhandle weather decided to swing warm, he did not want to wear short ones AT ALL, and then just when I got him sort of used to the idea of short sleeves, the weather would swing back to cold and he would get to wear long ones again.  That may not seem like much of an issue, but trying to put a short-sleeved shirt on that child made him scream, cry, and wrench the shirt off of himself as if it had a prickly thorn lining.  And this didn't happen once or twice, but every day for about a month.

Last spring, we had one instance of not wanting short sleeves and then he got over it.  Last fall, we had a few mild instances of not wanting long sleeves and then he got over it.  I was completely unprepared for the battle that short sleeves turned into this spring, and also the emotional wretchedness that came along with it.

I knew this was because of the sensory issues that plague most children on the spectrum, and I knew that to Ben, the sleeves were scary and/or uncomfortable because they were different from what he had been wearing for several months.  I don't want my child to be alarmed, uncomfortable, or scared, but at the same time, I don't want him to get used to avoiding uncomfortable things completely.  Lots of things are going to be uncomfortable to him, and lots of new things are going to be scary, but I was faced with this quandary that parents of children with Autism end up in: give in or push the issue?

I kind of wanted to give in.  Maybe Ben could just always wear long sleeves, even though the temperature does hit over 100 here in June.  Maybe being too hot would make him want short sleeves.  Maybe giving into this one thing wouldn't set the stage for having to give into all things because he screamed and cried and didn't want to try them.

But they are just sleeves.  Not snakes, not sky diving, not asparagus.  Just sleeves.  My main goals for Ben are for him to grow up to be functional and happy, and giving up and letting him wear long sleeves when the weather clearly called for something else just didn't seem in step with helping him reach those goals.

His wonderful occupational therapist was a bit stumped by it as well.  She suggested we trim the sleeves of the shirts bit by bit to get him used to it, but I had an issue with chopping up perfectly good clothing.  I searched online and found nothing but either what the therapist had suggested or just ignoring it and letting him burn up in long sleeves in Texas.

So I did something else.  Something that I do not recommend trying at home.  Something that I hope came from my love for Ben and faith in his ability to adapt and not from some horrible motherishness on my part.

I hid all of the long-sleeved shirts and all of the long-sleeved jammies, announced that they were gone because the weather was warm now, and MADE HIM WEAR SHORT-SLEEVED PAJAMAS.  He screamed, cried, removed the T-shirt over and over, and I hugged him to me and rocked him in the recliner under his weighted blanket and just let him scream it out while desperately hoping I wasn't scarring him for life.

The next morning, he woke up all smiles, did not mention the horrid T-shirt his mean mother made him sleep in, and calmly picked out a short-sleeved polo shirt with a dinosaur on it to wear to school that day.   He now occasionally mentions wanting long sleeves when he gets dressed, and almost always asks for long-sleeved pajamas, but aside from tugging at the shirt a bit when he first puts it on he is fine.  He even wears sleeveless shirts on occasion.

Did I do the right thing?  I have no idea.  Would I recommend it to others?  Probably not.  But, as I am learning more and more, every child with Autism is different, has different issues, and needs different things.  I didn't know what to do, so I did what occurred me and it just happened to work out this time.  I am happy he gets dressed with minimal problems, but I am totally dreading the fall.  I did my best, and no matter what happens or comes up in the future, I will do my best for Ben, even if that means not knowing what to do and just having to feel my way through a situation.

Below is a series of pictures illustrating what occurs when I ask Ben to smile nicely for a picture to document the occasion of wearing a sleeveless shirt, or to document any occasion for that matter, simply because he thoroughly enjoys refusing to cooperate with me.  He's a mess, but I sure do love him.

The Potty Endeavor

I am inclined to write about potty training just now because one of my FB friends recently posted a status about having seen a mother shopping with an older-looking child in a diaper with a pacifier.  He conceded that the child "might have something wrong with him", but declared that to him, that is "just laziness on the parents' part."

Ahem.  Let me find my soapbox and get into position.  Okay, I'm ready.

At our house, potty training has been a three-year-long affair including books, multiple family members, therapists, teachers, stickers, M&Ms, a musical potty chair, a social story, a special poster, and more Pull-Ups and pairs of undies than I can count.  We have had successes, messy failures, plateaus, and disasters which have required rewards, consequences, and tons of scrubbing.  And while Ben is now five and it is still a work in progress, I don't ever remember lounging around and declaring, "Aw, I don't feel like messin' with this today.  Here, just wear a diaper."  Not ever.

Ben and I began potty training when he was two years and three months old.  I started right after school let out, armed with two children's books called "The Potty Train" and "The Potty Book", an instructional book about training, a musical potty chair, and little blue and white star-printed undies.  I thought for sure we would master that in a summer since I planned to work on it every day, and I was looking forward to having it over with.

Ben liked the potty just fine, and he never protested it much.  Our days were filled with trying every thirty minutes and celebrating successes with cheers and hugs.  Accidents were dealt with by firmly telling him no, and what was to be done instead.  We tried and tried, but it just never went anywhere. If he just happened to be on the potty when he needed to go, he would and that was great, but if he wasn't then he had an accident.  This was way before his diagnosis, and I had no idea why he couldn't indicate when he needed to go or why he just didn't seem to care.  His speech therapist (because he was non-verbal until he was 3&1/2) worked on signs for pottying with us, and I took some comfort in the fact that my Aunt Lenis, mother of three and sitter of many, told me not to stress because little boys just didn't give a rip and that I would probably be packing little pairs of undies in my purse for many years to come.

But mainly, since mothers have such guilty bones, I felt like a failure.  I had done it wrong.  I had misread Ben and thought he was ready when he wasn't.  I wasn't consistent enough, smart enough, etc, etc, etc.

School started again, and Ben began daycare in Pull-Ups instead of undies as I had hoped.  We still worked on it and we still had no progress.  I initiated the use of a sticker chart and a clapping ritual for his successes, and built up the greatness of using a potty.  We spent a lot of time working on it, to the point that I often felt like my life revolved around poop.  We tried everything we could think of, and almost everything anyone suggested.  Potty training was an arduous battle, punctuated with successes that gave me great hope, followed by massive failures that dashed it.

I don't think I ever could have been called lazy, though I saw the smirks of other parents at Mommy and Me Gymnastics when they saw the waistband of Ben's Pull-Up peek above his shorts, or when I bought those Pull-Ups with Ben in the cart, and the cashier would cluck, "He's such a BIG boy."  And, of course, there were the stares and whispers when he had an accident.

Thankfully, three years after starting this process and at the age of five, Ben is now mostly successful at pottying "like a big boy".  He has a social story and a social story-ish poster for pottying that were made by our wonderful Parent In Home Training teacher through the school district.  He wears undies during the day, even to school (thanks to his vigilant teachers), and a Pull-Up at night, though he rarely wets it.  He mostly tells us when he needs to go, and has recently begun to go on his own.  He takes off his own pants, etc., following the steps on his poster, even at daycare or Noni and Poppy's house where he doesn't have one.  And right before I began typing this post, I heard him singing a song he'd made up about pooping, and there he was on the potty, all by himself, just like he is supposed to do.  He does still have accidents, but there are fewer and fewer all the time.  After three years of hard work, he is now truly ready.

The main point of this rant is that you just never know why someone else's child is still in a diaper or has an accident or has a pacifier or whatever.  No, not every parent does everything they should for their child, but a diaper does not necessarily symbolize laziness, nor does it mean something is "wrong" with someone.  You never know what someone's child has gone through medically or developmentally and if you don't know, you shouldn't judge.

Now please excuse me while I return my soap box to the closet.

Lines

Yesterday evening, Ben and I played with some Play-Doh at the dining room table together; then he wanted to color, so I put his Crayons and a coloring book on the floor between the dining room and living room for him.  Because I am sick and felt horrible last night, I went to sit in the recliner.

I know.  That was a mistake, and it is completely my fault.  I know better, and I deserve the scrubbing I had to do and the carpet cleaning I will have to do.  Judge all you want, but I felt like complete poo, and that is my excuse.

Ben came up to me and said, "I made lines!"  My first thought was, "What do you mean 'lines'?" because Ben doesn't draw in lines.  His extremely delayed fine motor skills are one of the more obvious signs of his high-functioning Asperger's.  When we had him diganosed through the school district, they estimated his fine motor skills were at about 18 months of age, and he was 4&1/2 at the time.  It was terrifying, and one of the reasons I was driven to find a better placement for him.  His former class was so over-crowded that his teacher could not work one-on-one with him, and his fine motor delay was grossly neglected.  Ben draws in unformed scribbles and specks, or so I thought. 

I went to see what he was talking about, and sure enough, about four feet from where I was resting, there were lines.  Of crayon.  On the carpet.

That poor carpet. 

But I barely had time to think about that, because THERE WERE LINES!  BEN DREW LINES! 

I was so excited I cried.

We had him draw more, and he carefully held the crayon with his pointer finger on top to guide it and drew lines.  LINES!  STRAIGHT LINES!  And just now, as I was typing this, he drew a circle.  A CIRCLE!  I nearly fell out of the computer chair.  And I cried again.  Ben thinks I've lost it, but that's okay.  I am so proud and relieved I can barely stand it.

It's amazing how much hope a line of crayon on the carpet can give a person, but that comes along with this syndrome.  The 'little' things are amazing for children on the spectrum.  Because they struggle with those little things.  Those things some people get to take for granted, parents of kids on the spectrum get excited about.  What some parents would be angry about, I want to frame and hang on the wall and save forever. 

Of course we told him not to draw on the carpet and that coloring is for paper, but it is impossible to be angry about your child's success.  And I do consider this a beautiful, wonderful, glorious success.  It's progress, and progress deserves to be celebrated. 

We work with him at home, and his occupational therapist works with him, but I know this success is due to his new teacher in his new placement.  He brought home a huge stack of papers on which he had helped cut, paste, draw, and trace his name.  There were at least twice as many papers in that stack from about nine weeks in Mrs. S's class than he brought home from his two years in his former placement.  They work with him every day.  They work and they work, and now Ben can draw LINES!

Beautiful, wonderful, glorious lines!

Angry

I am not a political ranter.  I do not do this often and hope to not have to again.  But this is a bit of a rant.  An angry, outraged rant.

I recently learned of a proposed state budget plan to cut Autism services, as well as pre-kindergarten.  THEY WANT TO ZERO OUT THE ENTIRE AUTISM SERVICES BUDGET.  Meaning no more Autism services in the education system of the state of Texas.  I am outraged, horrified, and frightened in response to this choice and the possible harm it will cause to Ben and every other Autistic child in our state.  The population of children with Autism is climbing at a terrifying rate, and our state is responding by cutting services for them.

Ben has received speech therapy, occupational therapy, and PPCD (special education pre-school) services, and he is currently thriving in an Autism PPCD class, which he is supposed to attend next year.  Those services have yielded a multitude of positive results for my son, and we have been given a great amount of hope for his future.  He would be lost in a regular classroom.  He would be lost without his teacher, who specializes in teaching children with Autism and has many years of valuable experience.

The state of Texas is attempting to devastate my son and his future.  It is also attempting to devastate the futures of all the children with Autism in the state, as well as the strength of the state's future workforce and stability.

But they are prepared to add obesity services.  Autism is a disorder which cannot be prevented or cured, and causes multiple learning issues.  Obesity is not and does not. 

I witness first hand every day the amount of sugar and deep-fried foods that my kids cart around in their backpacks and eat after school or whenever a teacher is not staring directly at them.  They turn down fruit at breakfast and vegetables at lunch, and would rather go hungry.  One of my students last week informed me that he ate an entire box of zebra cakes for dinner.  There is no school program that can help that.  All the funding in the world is not going to eliminate that, but it would do an enormous amount of good for special-needs children.

I have worked very hard for the last eight years to provide a first-rate education for my students, only to have my own son's services threatened by a group of politicians who have probably not spent one minute with an Autistic child or in an Autism unit.  They are threatening my son's future, as well as that of countless other children in our state.

The slogan "Don't mess with Texas" comes to mind.  Texas should not mess with our children.  They have a right to an appropriate education.

I have emailed our governor, representative, and state senator.  I urge you to do the same, if you are so inclined.

http://governor.state.tx.us/contact/

http://www.house.state.tx.us/

http://www.seliger.senate.state.tx.us/

A Rough Day

Actually, it started off as a pleasant day.  We snuggled up under a blanket this morning and watched Curious George, we read stories, played with blocks and dinosaurs, and changed the sheets together on our beds (which Ben thinks is a big game).  We giggled and had a fun, lazy Sunday together.

Then, while I was drying my hair, I looked up from the hair dryer to see Ben's hands covered in something that definitely should have gone in the toilet.  I grabbed him and scrubbed his hands, took off his shirt to scrub the rest of him, and asked him what had happened.  "I pooped, " he replied.  "Where?" I asked him, afraid of the answer.  "The living room," he said, "The dining room.  The kitchen."  So I headed into the front of the house to see just how bad it was.

An hour of scrubbing later, I am still not exactly sure what happened or where it started.  I think he was trying to clean it up with a kitchen towel and got it all over himself, so he tried to wipe the uncomfortable texture off of his hands.  On things and furniture not intended for that purpose.  I'm sure you can imagine.

I was angry.  I was frustrated.  I was sad, because I had thought we were finally making progress with pottying after three years of training.  I yelled "No, no!" at him and said I was going to spank him.

I have never spanked him.  Never.  I personally believe it does more harm than good for any child, and I think it would devastate mine.  Ben's dad and I agreed when he was small, even before his diagnosis, that this was not the way we would discipline him.  But when I said those words, Ben's eyes grew big and he began to cry.  As far as I know, he has never been spanked.  We know he knows what it is, because he has talked about it before, but he has said he has not been spanked.  Daycare and school don't spank, and my parents have respected my wishes concerning it; however, he has been around enough other kids to have surely heard about spanking.

Regardless of what his knowledge of spanking might be, his little face crumpled in terror, so I took a deep breath, and picked him up and hugged him instead.  I repeated my mantra about what to do when he needed to potty and reminded him of his social story and picture poster for pottying, and then put him in his room and made him stay there while I cleaned up the mess.  That upset him enough, as he screamed and cried and asked for his daddy for the first ten minutes or so.

I scrubbed and cried.  I am glad I didn't spank him.  It wouldn't have helped.  His pottying issues are beyond his control to an extent.  He is making progress, but we do have set backs, although today's set back was pretty awful.  And when I was finished and went into his room to get him, he immediately told me he was sorry and he loved me.  I, of course, told him I loved him more than all the stars in the sky.  We read his pottying social story together, and I think the trauma is behind him, though I just heard him tell one of his little astronauts not to poop in the space ship.

I don't know that I am over it, though.  I'm over the mess.  It was bad but not completely unprecedented; I'll just borrow my mom's carpet cleaner again.  I am worried about my initial reaction.  I am worried that I am not strong enough to calmly handle bad incidents.  He deserves a mom who can keep it together and be there for him no matter what.  I am trying, but I don't know if it's enough.

The Night the Lights Went Out in the Bathtub

Ben has always enjoyed a warm bath and tub toys as part of his bedtime routine, and because I have found it helps him unwind and go to sleep more easily, I try to let him have some extra tub time.  This is usually one of the easier parts of our day; however, one day last week this was not the case.  Not at all.

At about 8 something pm, Ben was in the tub happily playing with ducks and boats, and I was sitting on the bathmat with my back against the wall trying not to fall asleep when it happened: the lights went out.  Ben immediately began shrieking hysterically, "It's dark!  It's dark!  Fix it! Fix it!" so I scrambled to get up (smacking my forehead on the bathroom door in the process) and grabbed him out of the tub.  It was indeed dark, pitch-black.  All of my lights were out, and my neighbor's many porch and side lights were out while his boxers barked their heads off and my son screamed like a banshee while flailing his arms and legs.  He was wet and weighs 42 pounds, and I was terrified I was going to drop him or fall with him and break a bone and then where would we be?  Both of us screaming on the floor in the dark and not a thing to do about it. 

So I gripped him as well as one can grip a sopping wet, flailing about 5-year-old and inched out of the bathroom, through my little twist of a hallway, and across the dining room, being as careful as I possibly could not to smack his head on anything, when I hit my toe on the door facing.  I yelped, then sucked it up and kept the string of obscenities inside my head so my son wouldn't repeat them, and then we continued inching our way into the kitchen while he continued his screaming and twisting.  We finally found the rechargeable flashlight in the kitchen, and I managed to hold it, Ben (who would not let me put him down), and my cell phone and called the electric company using the magnet on the fridge.  The outage had already been reported, and when I looked outside I knew why: there was no light.  Not anywhere.  Not on the Interstate that runs past my house, not as far as I could see.

I tried not to panic or show Ben that I was a little freaked out myself, lit candles, and then took the flashlight to the bathtub to finish bathing him, and then gave him the flashlight to try to quiet the shrieking and calm the panicking.  I resolved to buy more flashlights while helping him dress in his jammies as Ben aimed the only light directly into my eyes the entire time, and we headed to the living room to call his dad to tell him goodnight and read our bedtime stories by flashlight.

Ben stopped screaming and crying, but he would not go to sleep.  He would not.  He continually talked about how the lights were out and the electric company needed to come fix it.  Ben is not much of a question asker, but he repeatedly asked when and who would come fix the electricity.  When?  Who?  When?  Who?  He was very anxious about it, and nothing I tried calmed him.  Not stories, not the weighted blanket folded in half, not back rubs, not snuggling in my bed, not singing.  It didn't help that the house was completely silent.  He was very distraught by the whole event.  I was trying very hard to remain calm and patient but the whole time I was imagining a truck flying off the Interstate in the dark and landing in my living room, so it was very possible he could sense my anxiety.  I swear he has antennae for that.

About two hours or so after the electricity went out, it came back on.  I had enough fore thought to turn off everything except the porch light I leave on anyway, and only missed one lamp in the living room.  But as soon as the porch light came on, he sat straight up in the middle of my bed (having still not been to sleep yet) and anxiously said, "They fixed it!  The lights are back on.  When will they go back off?" and he said it over and over.  He didn't shriek, but he seemed almost as distressed as when the electricity went off in the first place, which confused me.

I'm not sure if this was so upsetting because of his sensory issues or because of the abrupt change in routine or both, but that child did not go to sleep until after 2 in the morning.  And when the electricity went off again two nights later at 2 something a.m., I woke to him shrieking and he did not go back to sleep that night, even when it was fixed an hour later.  Again, he was distraught and no amount of reassuring and snuggling could soothe him, even after it was all fixed.  Zombie Mommy returns.

We are now the proud owners of  a variety of flashlights stationed all over the house just in case, but my main concern is how frightened he was and how stressed out he became over it.  He gets obsessive sometimes, but even after the problem was solved he was still just as distressed as when the lights went out.  And now, a full week later, he talks about it regularly, especially at bath time, and he is now afraid of the dark. 

I don't know what the answer is to this one, and I didn't see this kind of problem coming at all.  I think it could upset any kid, but he is having an awfully hard time getting over it and is still afraid of it.  Nothing bad happened (not to him--just Mommy) and I did my best to calm and comfort him.  It might just take some time, and I do think that he will make peace with it eventually, but I sincerely hope we don't have to deal with it again for a long, long time.  Like never.  Never would be good.

Parenthood

There is a show on NBC on Tuesday nights called "Parenthood".  I have only seen about 1&1/2 episodes of this show, and most of the drama in it is uninteresting to me.  However, there is an 8-year-old character on the show, Max, who has Asperger's Syndrome, and that interests me a great deal.

In the episode that aired February 22, all I saw was Max being told that his social skills trainer would no longer be able to work with him.  It was an abrupt transition that he was not prepared for in advance.  His reaction was one of alarm and anger, and I thought that seemed about right for a kid on the spectrum who has to deal with a sudden change in routine and was losing a familiar person.  We have gone through this many times when, for example, a daycare teacher quits or the paraprofessional at school changes that Ben has bonded with; Ms. Ashlie, Mrs. Watson, Mrs. Finney, and Mr. Phillips are all still fondly remembered and come up in conversation and the running monologue that Ben has.

Last Tuesday's episode hit home a lot harder.  After a scene where Max insistently refused to leave the house without a particular pair of shoes, his father desperately wanted to have fun, uncomplicated father/son time, so he let Max play hooky (which Max argued about repetitively before giving in to the routine change).  It seemed to be going well.  They went to an amusement park, and Max talked obsessively about a certain roller coaster, including all of the engineering and speed specifics.  His dad promised him they could ride as many times as he wanted, they got buckled in, and then it happened. 

An announcement was made that the coaster needed repair and would not run for the rest of the day.  Max melted down.  He screamed, cried, and was genuinely distressed, not just disappointed.  He screamed that it was unfair and that his dad had said they could ride it.  He could not comprehend that it wouldn't work when it was supposed to.  He ran off and when his dad caught him, he was sobbing and shaking.  Everyone stared, the dad tried to calm him and comfort him to no avail, and in it all I saw my son.

That break down is almost exactly what happens with Benjamin.  It is not a tantrum.  It is an inability to function and accept the current situation.  It is not about being a brat.  It is about the fact that Ben is unable to process, accept, and deal with abrupt changes, transitions, and unexpected occurrences.

I expected Max to have issues with the noise and the crowd, as sensory issues are a hallmark of Autism, but I didn't catch any.  That melt down was spot-on, though.  It was terrifying and overwhelming to the parent character, who portrayed the same kind of helplessness and frustration I often feel while scrambling to calm my son down and help him cope.

Something else from that episode that struck a chord was the parents' attempt at discussing Asperger's Syndrome with Max.  He walked in on a conversation between the father and his brother (I guess) where the father blurted that Max has Asperger's.  Max appeared in the doorway, demanding to know, "What's Asperger's?"  The first time the parents tried to explain it, the mother cried the entire time, and the father was vague in answering Max's questions.  The second time they broached the subject with him, they talked about the specific issues Max has that are related to AS (not making eye contact, not being able to read social cues, needing extra help with those issues) and also his strengths that are a part of the syndrome, like his good memory, extensive knowledge about subjects of interest, and his intelligence.

I have often worried about how we will broach the subject when it is appropriate for Ben, and I think the second way was a fairly good model.  Right now, he doesn't know about it.  He doesn't know that his speech therapy, occupational therapy, and PPCD class are anything out of the ordinary, and he doesn't know that the way he does some things is viewed as peculiar by others.  I wish it could stay that way, but I know it won't. 

I know there will be a time when we have to have those hard conversations.  My main concern is that I don't want Ben to feel inferior or as if something is wrong with him.  I want him to feel valued, and loved, and capable of anything.

In the meantime, I think the show is doing a decent job of portraying a child with Asperger's, and I am glad they are doing so.  I am especially glad the character has strengths and is seen by his parents as remarkable and special, because that is exactly how I see my Ben Bear. I just hope I can help him see that in himself.

5 years

Dear Benjamin,

 A week ago, you turned five years old.  We celebrated with a family party, a chocolate dinosaur cake, lots of presents, and a big-boy bicycle.  I can hardly believe that it has been five whole years since you changed my life.  I still clearly remember the day you surprised us all by coming into the world a month early, and I know I will never forget it.

You have made me better.  Becoming a mother, raising you, and loving you has made me see the whole world in a different way.  I believe I am now a more understanding and less judgemental person, and I am a better teacher because of it.  I needed a new perspective, and you have given that to me as one of many gifts.

This last year was a big one for you.  Not just because of your diagnosis, of course, but your diagnosis has been important in bringing about many important and positive changes in our lives.  We understand you better now, and are able to better meet your needs and help you.  You attend a more suitable school and PPCD program with a teacher who is better able to educate you.  You have an occupational therapist.  You have a weighted blanket that enables you to sleep better and to go to sleep more easily.  You have made friends, and you adjust to new situations quite a bit better than before.  And your verbal communication has taken off like a rocket.

You still repeat a lot of things that you hear (echolalia), but you communicate with us about your needs and your thoughts more and more frequently.  You are now able to clearly communicate specific wants, and you are beginning to talk about your feelings, like being sad or scared.  I especially love when you say, "I'm happy!" or when you spontaneously hug me and say, "I love oo!"

You still have obstacles to overcome, and I am afraid some of them will always be issues in your life.  I promise you, though, that I will always be here to help you face them.  I love you more than I knew it was possible to love, and you are the center of my life.

The last five years have been wonderful, and I cannot wait to see what the next one brings.

Love always from your biggest fan,

Mommy

Facing Fears

Ben is afraid of all new things.  New people, new places, new situations, new routines, new food, and even new toys sometimes.  He warms up to most new things, some faster than others, at his own Ben pace, but it makes me nervous to introduce new experiences because I just never know how he will react.

Last year, we went to the circus for the first time, and even though I was worried he would freak out and we would have to leave immediately, it was a huge success.  He did not mind the crowd or the noise, did not streak off out of sight, and enjoyed it thoroughly, so we went again this year.

This year, Ben just happens to be a big fan of elephants.  Elephant toys, elephant pictures, the elephant named Kayla in Curious George 2, and even the song "Baby Elephant Walk" by Henry Mancini.  He was excited to see the elephants at the circus today, but I didn't even consider the possibly of an elephant ride for him.  It would be a new experience, involving new people he did not know at all, scary stairs, and of course, a great big elephant.  I assumed just the thought of it would freak him out, but to my surprise, upon seeing a child climb atop the elephant, he pointed and exclaimed, "I want to do that!"

I knelt down, got him to look at me, and carefully explained what would be involved in doing that: waiting patiently in a line full of strangers, climbing the rickety stairs, letting a perfect stranger put him on the elephant, riding the elephant with a few other perfect strangers, and then letting the man take him back off of the elephant.  He listened until I stopped talking and then immediately said, as patiently as possible, "I WANT to ride the elephant!"  As in, what is your problem, woman?  I already told you I want to.

I took a deep breath, we stood in line more or less patiently, I handed over eight whole dollars to the surly ticket seller, and up the rickety stairs we went.

My mind raced with all of the horrible things that could go wrong: screaming, shoes being kicked across the room, hitting of himself and others, and OMG, what if he managed to hurl himself off the stairs, or worse, the elephant?

But he was perfect.

Perfect.

He nicely handed the man his ticket, calmly allowed that man to place him on the elephant, squished in with the other kids, watched as the man hooked the rope around them, and off they went for their brief elephant ride.  He beamed the whole time and did not get upset, scream, cover his ears, or kick his shoes off one single time.  It could not have gone more smoothly.

I don't know if Ben was really facing his fears or if he just wanted to ride the elephant so badly he forgot about them, but I had to face a few. 

I have learned I need to give him more credit, and I am reminded of just how amazing my little boy really is.

A Better Fit

A few posts ago, I mentioned that I had asked a question about Ben's placement for next year at his ARD in October and was told we needed to wait and see how much progress he made and that we would discuss it later.  If you know me well, you know I have trouble "waiting and seeing," particularly when it comes to Ben or even my  big kids, for that matter.

So I didn't.  Oh, I stewed on it for awhile, but the more I thought about Ben's fine motor delays, his unhappiness in his PPCD, and his lack of progress in general at this particular school, the more it became an emergency in my mind.  Because that's how my mind works.  Things become an emergency if they aren't working out properly and I need them fixed RIGHT NOW.  But I had no idea what to do about it.

I emailed the wife of a friend (both are teachers in my district), whose son had been in a PPCD/Employee Pre-K situation like Ben's and had moved to an AS PPCD at another school, to ask about her game plan for moving her son.  I followed her advice and emailed the diagnosticians at both schools involved, and prepared myself for a battle.  I would make demands, work my way up the chain of command, and even kick and scream if need be.  I was prepared to fight for what I believed Ben needed.

I was not prepared, however, for how easy it was to put it all in place and how fast the transition would arrive.  I sent that email four weeks ago, and Ben just finished his first week at his new school.  Long story short, Ben's dad and I observed the AU classroom, met the teachers, instantly became convinced that this classroom was the best learning environment for Ben, sent an email, had an ARD scheduled, had that ARD on a Thursday, and Ben started the new program the following Monday.  Done. 

If I had any idea it was going to be so easy, I would have done it as soon as we had his diagnosis from the district.  There were a lot of things I didn't know, though, like that I could ask for the AU placement, whether or not they had room for him in it, and whether or not the district would fight me or if all of the adults involved would do the right thing for Ben.  Fortunately, it was a unanimous decision and to every one's credit, it was handled easily and efficiently.

The best part, of course, is that Ben's new classroom is a much better fit for Ben.  It is a more restrictive learning environment than his previous one, which is not usually the way one wants to progress through special education programs, but it is more appropriate for him.  He had "regular" peers in his old one, but a large teacher-student ratio.  Now he has a classroom of six students and three adults.  Now he has a classroom with a fine motor skills table and a school with a sensory room for meltdowns, instead of just a sad face mat for time out.  Now he has a teacher with a great deal of Autism experience and knowledge for how to help kids like Ben.  Now Ben likes to go to school, and I feel sure he is much more comfortable in his new classroom.

I was terribly worried about the transition, as all transitions are scary and difficult for Ben, and he did scream the first day and kick his shoes off and try to follow us out of the classroom.  But it was just one day of trauma.  He reportedly walked right into that classroom the other four days of the week without incident.  One of the trade-offs of having him at this school is that I can't take him.  It is too far from my school and I would be late to my own first period every single morning.  Thankfully, his dad is taking him everyday, but I am sad about not being involved in that aspect of Ben's life.  I do talk to him about school every morning while I get him ready, and those conversations have been more positive on his part this week.  I can tell he likes it and feels happier there and I am thankful for that.

The moral of this story is to ask questions if you are not satisfied with your child's education.  I know there will be times in the future when the answers will not be not as easy as they were in this instance, but the result of having an appropriate, safe, happy learning environment for your child is well worth whatever pushing you have to do.  I am saving that tantrum I was going to throw in case I need it at a later date.  You just never know.

Mixed Messages

I was at a large staff development today at the local event center.  Several vendors of teacher-related products and also jewelry and T-shirts had set up camp there, and a few friends and I milled around while waiting for the conference to start.  One of the vendors was a local (Texas Panhandle area) T-shirt company that offered me a flyer.  They had cute stuff, so I took it and glanced at it while we were waiting to enter the auditorium.

One of the sample shirts on the flyer stated:

 Autism Rocks! (And flaps and spins and screams and licks!)

I was horrified.  I sometimes react very strongly to things that offend me, but the two ladies who were with me at that moment were also horrified, so I have decided my offense and shock were warranted.

I have an Autism Awareness ribbon magnet on my car.  I do not hide Ben's diagnosis.  I would gladly wear one of the "I love a child with Autism" T-shirts I have seen, or even one that merely said "Autism Rocks!"  I love my child and am immensely proud of him, but one of my biggest fears for him is that he will be made fun of, bullied, and possibly hurt by others because he is different from some kids.  This T-shirt adds to my fear, and the idea that it is marketed to teachers and the possibility that a teacher might actually purchase it and wear it around his/her Autistic students infuriates me.

The taste and appropriateness of some statements are questionable, and some people might think that was a gentle kind of teasing, and I do believe that its intent was probably not to be offensive or to ridicule people with Autism.  But as both a mother and a teacher I find that T-shirt horrendously offensive.  It is not just a matter of bad taste.  It is a matter of demeaning children.

My initial thought was to march right back to that vendor's table with the flyer in hand and inform of her of just exactly how offensive I found that shirt and just what exactly she could do with it.  However, I was at a professional conference, and I ultimately just threw it away and stewed on it.  But I do regret not saying something (something calm but pointed) to that woman.  Maybe she didn't realize it would be offensive, because maybe she doesn't know any children with special needs or maybe she saw it somewhere else and thought it would sell to her customers who teach.  Regardless of any benefit of the doubt anyone may give her, a little thought and consideration would have gone a long way.

It seems as if I have gotten angry a lot in the last week or so.  A FB friend used the term "window licker", an article written by the father of a child with Autism said his son had an "illness" and a "disease", and now this.  I am far from perfect, and I know I have made thoughtless and even ignorant statements before, but I have learned many lessons from loving and raising Ben.  One of the most important lessons is to think about other people's feelings before you speak.  I so wish this person had thought before she printed.