Number Nine

Merry Christmas!  Happy Chanukah! Happy New Year!
AND  . . .
Happy Happy Birthday James! You are one of the hardest working, amazing kids I have ever met.  Day after day, you not only go to school, but to therapy, and get through these days without being able to talk, without being able to understand how to do things in the same way as everybody else.  This past year, you have blown your Daddy and me away with your accomplishments.  You showed us that you have been listening and paying careful attention all along.  How is it that you can't use a pencil without help but you can type complete sentences with correct verb tense?  And just how long have you been able to read?  Yes, when you demonstrated knowing words without pictures to your speech therapist, I was in tears but they were for joy and pride and happiness!  I know you hate coloring and always assumed it was because you couldn't . . . but you like to draw and paint?!  I love the painting you made of me and the drawing you made of your buddy for her birthday (complete with her trademark open mouth).  Listen big guy, you are known for screaming at therapy too!  And the toilet training? Once you made up your mind, there has been no turning back. In the past week, you made me so proud when you got out of the bath tub to use the toilet!  And when we went out to lunch on Saturday and you got up and took Dad to the restroom?  You rule dude!  Not only for the few things I mentioned but for all you do every day.  Thank you, Mr. James!

PDA

James had a fever on Sunday night, so we cancelled school. The next day, he was no longer hot, but was super cuddly.  We loved that part!  By late morning, James showed signs of bouncing back. AKA: reeking havoc around the house.  What should we do?  We should get out but it was so foggy and wet.  You might take a "normal" kid to the mall or the movies.  Who wants to enter a mall this time of year . . . but the movies?  James has never gone.  Did we dare? Could he sit for that long?  Would it be too loud?  Too overwhelming?  What if some tot cried?  Would we be throwing money away?
Too much thinking.  It would either work or not.  We just went. The 11:10 screening of The Muppets.

One hour and 38 minutes later, we left the theater.  Although it was sunny and over 60 degrees, David and I were numb and shaking.  Not from being emotionally beat up, but from shear elation.  James loved the movie.  It was perfect.  Several times, James was so happy, he couldn't contain himself and he would grab me and kiss me!  And a few other times, when we could see him getting bored or antsy, those lovable muppets - as they have been known to do - would break out in song!  It was such a memorable day.  Unreal even.  I am not even sure if the sun did actually shine, or if it was just our utter happiness at our autistic son seeing his first theater movie.  It was foggy again by the time we got back to the house.  As David put it, when we were falling asleep that night, it seems like a dream.

Enough. Get Up and Go Mom

I'm not ready to give thanks.  I am uneasy and I definitely don't feel as grateful as I should. No, not true.  I am beyond thankful for James and his amazing developments this year.  Our kid is toilet trained, can read words and even type sentences.  Last week, he wrote notes on Facebook! Including one to his friend (really it was her proud mom with her daughter as her profile picture).  "Hi S.... Goodbye"  and his cousin, "hi K...I love you." Social interaction via a computer is ideal for an autistic kid!
So, I guess what I don't feel is a sweeping, cross-the-board, thankfulness.  I swear I do every year.  This year, I am perturbed by many of the so-called professionals in James' world.  I am blown away by the fact that, as James grows older, he is increasingly pigeon-holed.  Non-verbal = severe, just stick him in with violent kids.  Hey, those kids can't tell on you.  Listen, James can, and in sentences.  He can actually count and do homework.  No, not on his own.  You have to make him.  If he can get away with stimming all day, he will.  So what if he cries? Challenge him for crying out loud. If you think James will "cry it out," you've obviously never met a child with a will. James will cry to get out of any situation where you let him. You let him whine, he'll cry, eventually scream, and then he doesn't do the damn task - or puts it off for a good while.  Cool, great, he freaking WON you bloody educational idiots.  At home, he does this crap?  Unacceptable.  PERIOD.  Nip the whole damn thing in the bud.  His school is set up for autistic kids whose problems - although real -  make them just look undisciplined (they're not) OR kids that are so f'*ed-up that "normal" people look in horror and cross the street.  SO what happens when your autistic kid falls between the crack? Nothing.
Enough said, it is apparent that I am not thankful to his school this year, and I suck at lying.  But what I am grateful for is those angels who ease my stress and help me through life, so I can get James through his. From people who don't know it, like the super-friendly cashier, to those who do and go overboard, like C. who doesn't give up on me and has dropped everything to save my sanity, and most of all, to that gorgeous man who wants to live it with me.

I've Got Hurt Feelings ?

"Ghost"  This was James' typed response (on his iPad) to: "What are you going to be for Halloween?"  And spelled correctly, too!  Okay, I had already picked (and assembled) Robin Hood, but this was one wish that was going to be fulfilled!  After years of deciding every little thing for James, not only what costume he would be dressed in for Halloween, but what clothes he would wear daily, what presents he would receive for Birthday, for Christmas . . . James "spoke."  He clearly, undeniably, let it be know what he wanted!  How huge is this?!!  

Luckily two costumes worked perfectly for our two-home life-style.  At our shore house, trick-or-treating takes place the day before Halloween.  So, one ghost (who can't handle things over his face) went door-to-door at the beach.  We tagged along with our neighbors.  I loved how the kids would yell "Come on James" when he lagged behind.  At one house around the block, whose owners we didn't know, the woman was confused by James' behavior.  Our neighbor's eldest daughter - at that wonderful a bit bossy but still helpful stage - simply explained:  He's autistic, just put the candy in his bag! So not only did James decide what he was going to be for Halloween, he GOT Halloween.  He understood the ritual of going door-to-door.  He loved running after the other kids.  He was even great when we got home and allowed him to choose one item to eat.  Of course he picked the large-ish bag of sour gummies.  

At bath-time, James was cranky and complained mightily.  Even afterwards he was still whining, refusing to settle down and relax.  He wanted YouTube.  Um. . . No.  It was late, time to wind down and relax before bed. Major tears.  I tried the iPad. He chose: "I Feel," "Sad" and "Tired." I switched to the typing screen and asked: so, you are sad because you're tired? "No." "Tired of jou."  Then there was a correction "you." What?! James, are you tired of me?  Nod.  How can I be so crushed and so happy at the same time?

Fall AHEAD

It's starting and I am so very excited.  After an extremely rough patch caused by a bungled classroom situation, (and a mom who was way too slow on the uptake), we are starting to see a happy boy again.  Last week, in school, James had a GREAT day.  Mind you, he is very far from being comfortable and a not-so-good day was in the mix too . . . regardless, our James had his first great day in his new class!

At home - and this is the true measure for me - I am seeing that James is handling unexpected noises without dissolving into tears, even the dreaded baby crying (his achilles heel). Transitions have become smoother too.  This is beyond a relief because every transition, no matter how minor, was met with whines and even screaming protests.  Seriously.  When watching a video on YouTube, James would start whimpering toward the end of the clip!  This would happen even though he knows how to use the computer enough to call up a new video. You can imagine what it was like when it was time for his bath. Also, his patience and attention span (which had basically dissolved) is increasing.  This weekend, the two of us sat amid the stacks at the library, reading, for over an hour.  Similarly, when we ran into old friends at the grocery, James let us chat for over 20 minutes. Okay he fidgeted.  What kid wouldn't in such a boring situation?

James' school behavior still leaves something to be desired.   He has tried to escape the classroom and has refused to sit among the other students for a group activity.  He HAS to be in class and participate, so over time, when he realizes this inevitable fact, hopefully, these issues will disappear.  I have never seen anything even remotely similar, and this gives me hope.  I feel these issues are the last vestiges of the old class. Problem children were often segregated in that room and James was often removed to avoid the noise.  To top it off, he was then bitten while participating in a group activity.  These are real fears that were reinforced over the summer session. And James is an one intelligent kid with an incredible memory. Everything takes a long time for him and requires major faith and patience from us.  Thankfully, I am starting to see the light here too, because this morning, after crying every single weekday morning for over three months, James was happy to get ready for school!

Out & About

Finally!  In his new class, James has had two good days in row. Although it's too early to be celebrating, I feel I am rightly optimistic.   Until this point, James hadn't had ANY, overall, good days in class 202.  I am also really excited about the homework that was sent home.  Among the usual coloring pages, was an ongoing assignment.  Each week, we take a picture of James in the neighborhood and he has to describe the photograph.  Below is this week's chosen photo and his typed description.  I am so so so PROUD of James!

Eeatfrenchfries

And he typed it on a normal computer keyboard, too, not even his iPad.  At first he looked at the keyboard oddly, then he just began typing.  I was going to get him a large, brightly colored, child keyboard attachment for his birthday.  Um, Mom? Not necessary!

Outlook Hazy: Ask Again Later

Day Four in Class 202. This is a huge, much-needed change for James and I truly believe it is the right direction. I pray that it works.  Physically, it located on the second floor. The make-up is both boys and girls AND five of these children can speak!  James is now the oldest, after being the youngest for four years.  Once, he adjusts, I know he will not be scared here.  When David and I walked James in on his first day, even the chalkboard floored us.  It read: Friday, September 23rd. The first day of Fall.  Wow - a REAL classroom - we were stunned.

That said, James cried all day.  On Monday, he cried less.  At lunch on Tuesday, he began screaming and when saw the boy who bit him. Unfortunately, it took a long time to calm him. The teacher has decided to keep him out of the lunchroom until James is secure in his new class.  I like her already.

I hope and pray James adjusts quickly.  I am fearful that he will become the class disruption, hindering the other children's education.  And it IS education.  They are working on coin identification!  I know James can recognize them as money, he just doesn't understand them individually.  BUT???  Can he?  Will he?  Will he be lost?  My gosh, this IS the right place for James. He has not been challenged at school since his old teacher left. He needs to know what is expected of him at school.  He must behave and act a certain way at home and at therapy, why not at school as well?  I did not realize how long school had become simply survival for him.  Every day, James thinks that he has to go back to his old class. When I redirected him this morning, he shyly smiled at me and patted him chest.  "That's right James," I said, "You're a big boy now."  

Life Really Sucks

Against my gut, I have sat on my hands and let the school take action for three violent autistic children.  My own autistic son, hyper-sensitive to noise, has now associated noise with violence.  Thank you for nullifying all the years spent trying to desensitize him so he doesn't have to live his life wearing headphones.  Thank you for making the simple occurrence of hearing another's cry = fear for James.  As of Monday, you have cemented this in his brain.  James was bitten, breaking the skin, in the center of the back.  Unbelievable.  After a traumatic experience, we then had to sit in a doctor's office with understandably crying, sick children for an hour.  Not only did I have to shell out non-existent funds for the co-pay and two prescriptions, I have to put my kid on antibiotics - for 10 days - knowing the drug will throw him into an OCD quagmire.  All because a problem was not adequately handled AND because I did not act.  Sure, I complained but I did not demand.  I will beat myself up at a later date after I extract James from this mess. Wish me luck.

You!

Summer is so over. Everyone is back to their hurry, rush-rush "me first" mode. Driving is once again perilous. Pedestrians are impatient.  Such a insignificant attitude change makes a huge impact on our life. Sure, our 15-minute drive to the sensory gym is up to 30 plus. No issue there, we adjust plans for the extra travel time.  I wish other things were so easy.  I hate seeing fellow parents double park on both sides of the street - hindering and endangering traffic - just to get their kids to school. Meanwhile, a grandma dropping her non-ambulatory charge off at the therapists gets insults and rude gestures hurled her way. People texting while walking, or a group spread out three abreast across the sidewalk, get noticeably annoyed at James who can be slow and definitely stops to smell the roses.  Or the family, sadly parents included,  who stare agape at James (who is not pleased he has to stand in line), like he is a zoo animal. So, my kid has three heads?   At least he waves hello to your rude (and unresponsive) daughters.  I used to be jealous of "normal" families.  Okay, I still get envious that my son just can't join the neighborhood sports team or go to the school on the corner. But GEEZE, I am so lucky.  James is miles ahead of many adults here when it comes to kindness and basic manners. As Qui Gon Jin said in Star Wars Episode I: The Phantom Menace, "The ability to speak does not make you intelligent."  Who said George Lucas couldn't write dialogue?!

Severe Daddy

8 Going on 18

Sigh.  Summer's over and we are back to the grind.  Of course, James was ready awhile ago.  With almost a week to go, he typed in his iPad: "Go home. Mom. Shoes. Car. Ride. Go."
I tried to explain that there was  no school or therapy to go back to YET, but as soon as there was we would go back.   I know he would have preferred a more challenging summer, but it was a good combination of "stuff to do" and relaxation, let alone an earthquake and a hurricane!
James had a few "firsts," including an upside-down roller-coaster (thank you L&S!), steering a real truck (via our lovely - and carzy -  neighbor), and independently riding a two-wheeled bicycle (all Dad's doing).  James ate new foods: a plum, onion rings, and a bagel. Not to mention the wild glimpses into James' mind that is provided by his iPad!
There were some incidents, melt-downs and crying jags. Tempers flared all around.  Once James typed "Severe Daddy" after David lost his temper.  I asked James what that meant.  It wasn't until a bit later that I got "Make. Dad. feld (sic). Bad." Unbelievable.  Of course, all this is a bit frustrating too because James doesn't really write much more then he can say or get across.  Still, what is important for me to remember here, it is that it is LESS frustrating for James.  It eases his mind.  For instance, today, James started whining as soon as we got into his sensory gym.   It was very early, no one else was in the center yet.  What could it be?  Finally, I got out the iPad and asked what was wrong.  He chose the buttons for "I feel" "sad" on his communication application.  But WHY James?  He clicked the icon for the center, then "basement" and "interactive metronome"  AH-HAH!!!! The basement, unfortunately like many in the area, was severely flooded and is off-limits for the time being.  James is sad he can't work on the program in the basement computer room.  I told his therapist who gave him a big hug and explained that they would do lots of other fun things instead.  It worked.

Run Away, Run Away!

Forget the back-to-school media-blitz, Friday starts OUR summer.  Three-and-a-half weeks of unscheduled bliss!  It is not only the longest break we have ever had, but it is also, for me, the freest one. This is the very first holiday in six years where "toilet training" is not on my agenda. Unbelievable!!!

Of course this doesn't mean that my brain isn't filling up a new to-do list.  But again, it is with cool, unprecedented stuff.  I want James to get comfortable and consistent using the communication app on his iPad. I am going to introduce it as a constant presence over vacation.  I am still in amazement that James can read and type words.  Having to work on this is so not a chore for me or, more importantly, for him!  Besides major relaxing and hanging out by our little pool, our vacation will include library visits, beach visits, and lots and lots of social visits.  I want him to get out in the world!  So socialization and different situations are definitely on the menu.  Oh, what a rough life we lead!

Of course there are a few difficult issues at hand.  Some I am not sure how to address.  James has three kids with major, violent, behavioral issues in his class.  While the principal has addressed this problem and implemented so-far successful solutions, I am dealing with a little sensitive kid with a memory like an elephant.  What do I do when he presses "I feel. . . scared" on his iPad?  He was responding to hearing a screaming child (the very one who has pinched, scratched and dug his nails into James).  That day, I took James home.  Funny, they implemented the aforementioned (and only discussed up to this point) changes that day.  A week later, class 105 is calm but James is still terrified.  Last night was the first in weeks where James did not climb into bed with me.  If Dad takes over, James doesn't go back to sleep.  If James is with me, he sleeps. Unfortunately it is on top of me or on the same pillow with an arm around my neck.  I am hoping that he will miss school so much that it will trump any residual fears.

It brings up my next, maybe even larger, problem.  Is this no longer the right school for James?  He can read and write. James needs - and I can't believe this is a concern for us - academics.  A behavioral based school is no longer a priority. They are still concerned that James doesn't consistently identify his letters.  Um. Uh. Hello?  He is bored.  Ask him to type it on his iPad.  Or maybe he is freaked out by the kid in the corner punching his aide.  Sigh.  What to do here?  My plan is to get James comfortable  having his iPad with him at all times, so it has to be used in school.  They are hesitant and if this continues in September, James will be moved.  

Be Careful What You Wish For

Me & James in 2003 

Yesterday I wrote:  I want more.  And a few hours later, I got it. During James speech session I got a phone call from the therapist.  Could you come in the back?  Uh-oh, I flew.  They were sitting on bean bags, reading Eric Carle's "From Head to Toe," with the iPad on the ground.  It was on a keyboard screen.  "I am a monkey and I wave my . . . .?  What does the monkey wave, James?"  He began typing A . . .R . . . M. . . S.  "I am a seal and I clap my . . . "  H. . . A. . . N. . .D. . . S.  James became agitated but the therapist plugged on.  James ignored her question and typed "I know."  Then "bathroom" and "ppop" (poop).  "Who do you want to take you to the bathroom, James?  "Om."  That's me!  That is actually what I hear more than "Mom" from my apraxic boy.  So I took him to the bathroom.  He continued at home  What do you want? "Guice" for Juice. "Olizza" for Pizza.  Later he was crying and I asked James what was wrong.  He typed "Cry."  But WHY are you crying?  Again, he typed "C . . .R . . .Y."  Damn, I am doing it again.  Here I am presented with the most amazing gift, one that I only dreamed of . . . and what do I ask for?  MORE.  My sweet, precious, 8 year-old, miracle worker can not only read but write words - and I am not satisfied, I want more.  But you know what? I sure as hell am going to get it!!

Hurry Up and Wait

Our Summer doesn't start until mid-August and I can't wait.  With each passing weekend, it is increasingly hard to go back to the grind. Especially because James is on such a roll.  The toilet training is going smashingly and each week we can count the accidents, not only on one hand, but one finger!  I am comfortable running errands again.  I know James can control his body AND let me know when he has to use the toilet.  The only issue seems to come when he is having a great time.  He doesn't want to stop and go to the bathroom.  We WILL get there.  I have no doubts.  In the past month, between learning to use the toilet and mastering simple words, James has accomplished the improbable.  Now I am super impatient.  I want more.  I want it NOW.
I feel the time left after school and therapy leaves no Mommy and Daddy time.  It's all about bath, homework, dinner and relaxing.  So when school announced that Friday was going to be "Fun In the Sun Day," we started making alternate plans. The school version of "Fun In the Sun" is a lovely attempt at creating a carnival atmosphere for the kids.  Unfortunately, the reality is an unstructured, chaotic mess with crying children in a shade-less asphalt parking lot.  Or so it has been in the past. Better to play hooky and head to the beach for kiddie rides and yummy boardwalk pizza. We'll bring the iPad and teach him crucial, can't-live-without words like "roller coaster"and "ferris wheel"!

. . . and the tears flowed

The past month has been nothing short of amazing.   We have been concentrating on toilet training.  Willingly letting other things, like therapy and academics, slide while we work on this ONE major project.  At home, at school, and at therapy, the day has revolved around the bathroom.  And?  It's working!  After six years of trying everything under the sun and being met with a brick wall, James is getting it and the time we spend in the bathroom is less.  He is finally understanding that the quicker he goes, the faster he can get back to whatever he was doing. Occasionally he still has "accidents," although they are intentional now.  He doesn't want to stop playing and go inside to the bathroom or stop watching the movie that just started. James has even been staying dry on the two hour ride to and from the Jersey shore. And his grandparents' 50th anniversary, fancy-restaurant party? Dry dry dry!!!!

So to my amazement, James goes and shows me a little something he has been working on while I thought he couldn't handle anything but the bathroom.  James' grandparents bought him an iPad and communication application.  So far, we are only using it at home and at therapy, outside school.   At home and in Occupational Therapy, we are only using it for identification.   His speech therapist, on the other hand, has gone further, using it so he can respond to questions about the books they read.  James has even succeeded using images that don't exactly match the ones in the book, just pulled from the existing database in the application.  Yesterday, the therapist added two puzzle activities but didn't have time to load the images along with the words.  Buoyed by the success with the book, she tried it anyway.  She held up a puzzle piece and asked: "What animal is this?"  James pressed the correct animal. Again and again.  Floored, she asked, "James? Can you read?" "Yeah," he said and nodded.  She showed the occupational therapist, she showed me.  James didn't waver.
MY SON CAN READ WORDS.

Custom-Fit

Why am I surprised that my son is going backwards and understanding #2 more easily than #1?   Actually, I believe he does understand, just thinks the toilet doesn't apply to him. The beginning of this week saw a return to holding.  Luckily it was only a two-day period, but I live in fear it will return this weekend. He understands that the weekends mean no school and no therapy.  He will eventually see that doesn't translate to using the toilet.
It is tough training an autistic child.  It doesn't bother him if he is wet.  He doesn't care what people think of his urine-soaked shorts.  He is fine being a "baby."  James doesn't work for rewards either.  He was a handful when he started ABA, which is based on rewards, at age two.  So, instead, I tried taking away desirable things.  Now he no longer cares about going for walks. He has lost interest in lollipops.  No TV?  No music?  I will read books.  No books?  I will play with balls.  No toys?  I will sit in my bed and stare out the window.  It is hard to believe the tenacity of this kid.  But he is mine and those stubborn genes came from somewhere.  If anyone is going to be able to wait him out, it is, unfortunately, me.  Finally a job that is tailor-made for me and only me!  Woo-hoo!   It is not what I dreamed of or imagined, but the rewards of helping to create an independent kid - able to function in the world on his own -  are more than worth it.

Humility

Certain things are non-negotiable in our house.  No biting, no hitting, and no kicking.  I deal with James' autism as best I can, but when one of these arises, I am rigid and inflexible. Absolutely 

unacceptable
behavior!
I am not saying I never see hitting or kicking again - James is autistic and he is human - but it does stop.  So why am I accepting an 8 year-old wearing diapers?  

I mostly parent by making James think things are his idea.  Not only because he is very stubborn, but I want James to feel that his decisions and choices matter.  I have tried to carry this over into potty training.  For 5 years, we attempted various methods: naked baby, no diapers, staying in the bathroom for hours, and visiting at 30-minutes intervals.  And our approaches have not been inconsistent or haphazard, the last plan was a way of life for a year and a half.  It back-fired.  James stopped peeing and held for 13, 15, 18 hours. Suppositories were a way of life.  He is again regular, going in his diaper.  This is huge, taking us almost the same amount of time to get back to square one.  We read books, have an open door bathroom policy, and constantly talk about it.  Unfortunately, I am sad to say that my instincts were wrong, that gentle pushing has not gotten through to James and we are no closer to using the bathroom.  

SO . . . starting Monday, another non-negotiable decree begins in our house: wearing diapers is unacceptable.  We are loading up on elastic-waist shorts, underpants, plastic bed covers, and case loads of liquids. Hello Hawaiian Punch!!!  Yes, I am plying my son with what I consider crack because he cannot resist the stuff and then he will HAVE to pee wether he likes it or not.

At the same time I am rueing over my mistake, I am elated at one James made on his homework.  James rarely makes an error because everything involves hand-over-hand and constant explanation.  Last week was all about animals.  One day, we painted the background, another was about coloring the animals. Lastly, we read and then wrote the names of the animals.  When it came to the lions, I spelled "L - I - O - N - S."  Okay, James: write lions. L.  I.  and he wrote O.  No James that should be an I.  So he wrote an I . . . and then finished the word.  Amazing!   Once again, James is showing his old mom a thing or two.  Mistakes aren't all bad.  Rather, I should view mine like I view his, as a positive step on the path to learning.  Sigh.  How freaking wise can one autistic kid be?

Edit Thyself

I have had a severe case of the "unable-tos."  Been crippling myself, hindering writing this blog, because . . . I was afraid of what people might think.
Seriously?  After all the crap I have written here I am NOW worried?   Sigh.  I am annoying, letting my insecurities run amok. The guilt, embedded down there, still tells me that James' disabilities are my fault.  Even when I feel up-beat and positive, I still think I am not doing all that I should for him.  Again, ANNOYING.   The kid is 24/7, who could?
On one hand we hear, mom/dad put yourself first, you cannot take care of your child if you don't take care of yourself.  Then the next day I am "tsked" because I did not fully set up our son's new iPad over the weekend.  So we took time off!  There were major, community-wide yard sales and we had a blast, wandering around and scoring some bargains.  We felt "normal," or as normal as it gets for us.  Still, I felt pangs for not working on his communication app.  I guess guilt is unavoidable for every parent, across the board.  My special brand includes the times I like to pretend I am normal and that James is normal and that we can do normal things.  Envy?  I guess I have that too, I just don't think about it (or, more likely, skip right to feeling inadequate because it really is my fault).

We went to a family gathering, serious but not somber, for the unveiling of the tombstone for a dear friend of James' grandmother.  It was in a hotel, very fancy. There were speeches. Everyone was dressed up.  And James, well . . . according to everyone, James was wonderful and well-behaved.  The irony of this is, I was utterly exhausted afterwards.  James was "good" because he was on a VERY short leash.  I watched him like a hawk as I calmly and quietly talked him through the entire event.  No James, no jumping.  Feet off the couch. Do not throw that pillow.  Mind you, I aborted all before he actually DID any of these things.  No we can't watch movies right now.  We'll get more orange juice soon.  No, don't take off your shoes.  At one point I was actually cradling all 75-odd pounds in my arms like a baby.  Of course he was charming, giving me hugs and kisses, but I knew he was trying to get his way.  While James IS unbelievably sweet, he also knows how to work it.  So, in the end, James was thought of as a good boy and I smiled and thanked everyone.  Plagued with guilt because he wasn't really - figuratively, I sat on him the entire day - and I was pretending he was.  Then again, his listening and attention was amazing, paranormal in fact!  In the end, I guess I can say that James was pretty great that day and, well, so was I damn it.  We just won't be attending any events that call for normalcy in the near future - at least not those that occur on a weekday when Dad can't attend!

Slope Life

One autism "adage" is that development can be "one step forward, two steps back."  You think after 8 years I would understand!  I keep expecting James to reach a milestone, stay there and move on.  It dawned on me this morning WHY I am having trouble internalizing this little saying.  Because it's misleading.  Growth, no matter the person, is not linear.  Gosh, nothing is life really is unless it's man-made!  But I am talking about my James here. It's one step forward, two steps back, three side-ways and 75 diagonally.

He made it through a meal at a restaurant recently without his DVD player.  I thought, this is it!  But no, we're back on it again. After six years, he began sleeping through the night. WOo-Hoo!! Now, two years later, he gives us a hard time about going to bed, alternating with getting up in the middle of the night again.  I grew accustomed to hearing his garbled words.  They dried up.  Yesterday they were back stronger than ever.  Even saying "ring pop" when I asked him what kind of lollipop he wanted - that is after he told me he wanted a "olli-pop!"   His reciprocal language is even more advanced.  I don't always have to look at him or get his complete attention.  I can even yell from another room!  This is unbelievable.  I didn't recognize the extent until recently. I was making his bed and James wanted to watch a movie.  I thought it too late for one of his potentially excitable ones, so I told him that yes, we could watch one, but to pick from ours. I never looked at him.  He left me.  When I went into the living room, I was flabbergasted to find my son sitting on the couch holding a boring, grown up movie.

So what was learned here?  No clue.  I am just keeping steady. Trudging on, pushing forward, plodding along.  Doing my best to keep us on a even track because James' mind doesn't work that way.

Bizarreness

James continues to be an enigma.  One moment he is super "stimmy," seriously, majorly manic.  And the next?  An angel child.  Last night, I after I filled his bath, I came out to discover James stimming on the couch with the entire contents of a tissue box.  He was quite "gone" - unreachable - squealing with delight. He began kicking and slapping when I started pulling the tissues away.  He wasn't trying to stop me - didn't even know I was there - he just saw the tissues moving and attempted to swat those.  After I secured all the tissues, he just sat there. Finally he looked up.  I told him that tissues were not toys. We do not stim with tissues.  I saw that he was listening and I added: Okay then, time for your bath!  And he jumped up and ran into the bathroom and started pulling off his socks.  On top of that, he had a great bath.  Even tried to "help" wash himself.  Bizarre.

Similarly, a few hours later, we were all watching an Alfred Hitchcock movie. When it was over James got up and trotted into the bedroom, on his own. Very impressive!  We quickly brushed our teeth and climbed into bed ourselves. Awhile later, I heard quiet tinkling.  James had cleared off my dresser, put everything on the bed and created a tent for himself and all the objects.  Then he started to stim.  James sat among the objects and tossed them in the air creating the noise I heard. It is wild that he was attempting to be quiet about it.  Sneaky kid. I panicked a bit when I saw my wedding rings among this "booty."  David came in and helped clear the bed.  After hiding all the interesting and breakable objects we put him back to bed.  Soon, I heard some movement.  Not sure, but his hands were on the clothes that his dad had just took off.  I think he was about to pull them into the bed and stim.  I talked to him again. We looked at each other eye to eye.  I explained it was time to go to sleep.  I talked about the busy morning we had the next day.  So, time for bed, okay?  James nodded.  And went to sleep.  Just like that.  
Talk about "practicing" his autism!

James is His Own Man

James & his beloved L D-F

As a rule, I do not include names or photos of anyone outside our immediate family.  I am breaking that today. Because I am crushed. I feel like I am losing a loved one. I think I am.  James teacher is leaving. She came over two years ago and turned a topsy-turvy, rather chaotic situation into a calm, functioning classroom.  At first, I was apprehensive. She seemed unstructured. Instead, she was learning her situation, her students and their quirks. She observed and then quickly implemented. The change in James' life has been overwhelming. She always says: James is his own man.  That she has no hold on his successes.  She is so wrong!  James may think participating in school activities was his idea, but it was her slow and constant guidance that got it all started.

First and foremost, this woman single-handedly stopped the administration from using a strict bathroom schedule on James. One that had him holding and only peeing at night while in bed and only pooping with the aid of a suppository.  The chid could hold his urine for over 13 hours.  James' teacher risked unhappiness with her new employers and halted the procedure before James wound up in the emergency room.  She also was the first person to believe me - and I am forever in her debt. Most educators assume the parents are the weak link.  Even in this "enlightened age" of autism where the idea of the "refrigerator mother" has been deemed ridiculous.  Now we are thought of as loving but rather inept and uneducated.  While I often "drop the ball," it wasn't here and she knew it.  I think James using the bathroom is crucial to his development and to his future independence and participation in life.   Now James is only taken to the bathroom when other boys who could use the toilet go.  No luck yet but now James goes in his diaper while at school.  James has been in school for 5 years now, that he could become this comfortable is no small feat.

I also directly attribute the growth in James' confidence to his teacher. He knows that she understands him. She talks to the children, not at them. This might seem a small thing but for a kid who can't speak, it is HUGE. They are used to being in their own world and going unnoticed. She holds them accountable and they know it. If James is upset, he knows she will help him.

My list is endless.  She understand sensory issues in autistic kids.  She helped the school accept weighted vests, noise-canceling headphones, and the importance of carrying therapy practices over into the school day and not isolating them to the individual sessions.  When James stopped eating and drinking at school, she worked with me.  I was allowed to be there every lunch until I got him back.  It took over a month.  What other highly educated professional would let a lowly mom step in?

Other things I don't know for sure, but I see the results. Class trips have been with smaller groups, and more focused and practical.  Art and music therapy have been added.  While I know that comes down to funding, before their existence, whose musician-husband used to visit and bring his drums?  And I can't help but notice how her classroom attracts others.  They all stop in, the aides, the therapists, the janitors!  Even this year's classroom holiday celebration was one of overt and genuine affection.  Her group of aides love her and each other. The respect among these individuals is apparent.  Luckily they are staying while the hunt for a new teacher goes on.

So?  Knowing that this woman is so talented, how can I be sad that she is continuing her education?  Accepted as a doctoral candidate, furthering her studies into autism!  Isn't this the very kind of person I want to become a mucky-muck in the autistic world?!  Someone who understands our kids!  Someone who will continue to help others just like James?  Doctor D-F! Wow.  I fully expect to see her name in the paper discussing some new development.  Someone this knowledgeable, talented, well-spoken, poised - and did i mention drop-dead gorgeous - will undoubtedly soar!

Bon voyage, sweet L.  I will miss you.  And, from the bottom of my heart, thank you.

Holding Steady

Got My Buddy Back!

James is in a good place.  Thank God. Knock on wood.  Salt over the shoulder.  On vacation, while Dad was at work, we wandered the sleepy beach town.  Too cold and rainy for the actual beach, we hit the library first. Emerged one and a half hours later, still smiling with borrowed books and a movie. James sat with me in the stacks and read books for an hour and a half.  Even let me grab one for myself. Of course I unwittingly chose one with an autistic character. Can't get away even on a literary holiday!   Next day we tried the mall.  A slow walk through ending at a department store where James had a birthday gift certificate. He let me scour the sale racks, he picked out a big bed pillow, we "shopped." His patience and tolerance for "new" was unexpected and extremely impressive!   James even allowed maintenance grocery trips and daily runs for coffee and newspapers and a huge donut (aka carrot-on-the-stick).  Every morning we did brushing and joint compression.  His weighted vest was used regularly.   All in all, a successful time off from school and therapy.

Of course the downside was that James used less words, although he did show me that there were a few words that he had "down pat" (movie, lollipop, pretzel, pizza, ball).   A blindingly clear bit of speech came through one morning as I laid in bed, refusing to get up.  James tried everything jumping on me, turning on the light, pulling my hand, dragging a guitar into the bed and banging on it.  Finally he brought in a Bob the Builder DVD.  I asked him what he wanted, expecting "moo-bee."  Instead, James sang the words "Bob the Builder" in the theme show tune.  I have never ever heard him come close to a song, let alone nailing the words and the tune.  Amazing!!  It is in there, mom, keep it up!

The other cool moment occurred when James was sitting on the floor with a handful of goldfish crackers. Of course, they spilled everywhere.  I asked him to pick up the ones he dropped.  And he did.  Although these are amazing feats of listening, comprehension, and agility, what happened next is truly shocking.  James completely missed one little fish.  No matter how I directed him, he couldn't find it.  Fighting my instinct to just pick it up myself, I tried one more time: "James, it is under your right thigh."  James immediately reached down, plucked it off the floor and popped it in his mouth.   James knows right from left?  James knows specific body parts?

Back at school this week, James went on a school trip without me.  He had a blast and was an angel on the bus (his teacher's words)!   On Friday, during the science fair, James remained calm and checked out the exhibits, despite the noise in the large space.  My kid?  Wow.  Next week there is a another trip to the local library.  I am stepping back and staying away from the outing.  I don't think James needs me as much anymore. He is growing independent, and not in that scary, self-isolated autistic way.  James is slowly becoming more comfortable and confident in the world - and I cannot sufficiently express how amazing that feels!

Puling Out My (Gray) Hair

August 2004

Like many kids, I felt different and alone growing up.  Once in high school, a boy told me he would ask me out but I was too weird.  It didn't phase me at the time because I had a boyfriend, but I still remember those words. In college, I found artists and musicians and other outcasts.  Okay, maybe I was still weird and different but I was no longer alone.  Race ahead twenty years and I am back where I started.  It is hard - to impossible - to relate to others.  The stay-at-home mom moniker puts me in a category where I am so ill-fitted.  I do not clean or cook or organize anywhere near what is required.  Just enough to keep us clean, fed while Dad keeps us afloat.  I do not shop or go out to lunch as we are flat broke.  As if I cared about fashion anymore. I seriously attended the shows and followed fashion avidly.  It wasn't just a profession, it was a love.  Feels like a movie I watched once. Now my clothing choices revolve around what is clean, has pockets, and enables me to run!  What do I say when some new parent complains about sleepless nights?  It only lasts until they turn six-and-a half and then it will be sporadic? Or, how one mom friend feels, until you die?  How can I muscle up empathy when I hear whines about a little sweetie pooping in the tub? While it is understandably yucky, hey, at least they don't throw it at you!  Changing diapers?  I'm a pro.  Can't understand their cries and it is so frustrating because they can't talk?  It is a horrendous situation to be in, especially when your cutie is sick.  After 8 years without words, I feel like the baby whisperer.  Barring medical diagnosis, I can pretty much tell you what they are trying to say.

I have no interests except making James' life smooth and comfortable yet still stimulating and challenging as possible. No that's a lie, I have interests, there is just no place in my life for them.  I guess that is why I am having such trouble relating to others.  However mistaken and ridiculous my feelings are, I find their lives somewhat frivolous.  I understand depression and getting help muscling through reality, but I am talking about something deeper.  I sort of feel like all my issues cannot be voiced or I'll be sent off to the loony farm.  Unfortunately, my woes are the reality of dealing with a special needs or chronically ill or aging loved one.  It isn't awful.  It's just what it is and it doesn't need to be hidden under the rug.  Like it is okay to complain about your sleepless nights when you have a newborn but it is not correct when your kid is eight.  Somehow you shouldn't mention it because you make others feel bad or because somehow it is really your fault as a bad parent.  And I don't want to make people feel bad or uncomfortable, it's just sometimes I feel like my life doesn't exist.  Reality is out there somewhere and when, on rare occasion I get out, I can't really mention what goes on back here.  And no matter how horrifying it might sound at times, it doesn't suck.  I feel so lucky to have James and to spend so much time with him.  Believe it or not, I feel bad when I see a kid and a nanny.  We are all having fun at the park while you are at work!

Stim . . . and Stim Some More

Self-stimulation is one of the great autistic mysteries.  I mean, we all do it in some fashion - biting your nails, tapping your foot, drumming your fingers - but autistic stimming is quite extraordinary.  James' "stims" involve the senses.  They are heavily visual and incorporate sound and movement.   His favorite is to sit and flip balls or small toys around in his lap.  Soon he will start to bounce as well.  If I let him go, he adds some screeches.  Yikes! He even tries to involve me, lure me by suggesting we play ball. It always dissolves into stimming.  Of course that is my fault.  I hated the way stimming would take him "away" and would insert myself.  Recently, exasperated with the situation, I asked him:  James, WHY do you stim? (and yes, he completely understands the term).  "Hah-Pay" he said and nodded.  You stim because you are happy?  Yeah.
Wow.  I know he stims when he is trying to keep himself awake and when he has to go to the bathroom.  I am not sure if he is trying to avoid the task or distract himself because he finds it unpleasant (or it hurts).  Regardless, it seems stimming helps James to cope.  Wether he is happy or tired or constipated. When he is sad or hurt or afraid, James is verbal and seeks out interaction but these other feelings or emotions require that he stim.  It is so bizarre.  Lots of parents are horrified and try to make their child stop.  I find that hilarious.  Don't waste you breathe folks.  I do understand redirection.  James used to bang the heck out of his chin.  Not good.  Brushing and joint compression and a weighted vest have helped James but not eliminated the behavior.  Obviously he needs it.  I try to let James know he can stim in his room but that he can't do it all the time, that he has to interact with the world around him. And he does, in his own way!  The most recent development is hugging.  He now hugs his Occupational Therapist every morning.  Okay, not exactly normal but it gets his point across, and rather sweetly too.  Our James will never be normal and we don't want him to be!

James Arthur De Kooning

As the parents of our autistic sweetheart, one of our biggest disappointments - barring the obvious can't talk / use the toilet - has been James' inability to participate in activities we love.

We were overjoyed when he started to love music.  We started with soundtracks from his favorite movies and it has expanded. His major joy for the past year has been Chuck Berry, although he still likes his soundtracks and has dabbled recently with Johnny Cash, the Libertines, and has even listened to his Dad's new album.  Unfortunately, James gets VERY upset when David plays guitar. It actually induces shrieks of horror.  My poor husband, the musician!  Thankfully, we are starting to see little signs of "warming."  For instance, James likes to play - aka bang and pluck a few strings - on one of David's acoustic guitars.  He especially likes to do this when I don't want to get out of bed in the morning.  He thinks he is really playing and dances to his "music."  Once in a blue moon, David is even allowed to play, but it is still pretty rare.  One of these days, maybe we'll even get to teach him how to play correctly!

Another sadness involves drawing and painting.  It is a chore for James.  He has come a long way from where he would simply drop the writing implement.  Then, for years, hand over hand (with a vise grip), was the only way a mark would be made on a page.  Now my hand is more of a light pressure, a guide and a touch.  When he is writing his name, I often let him "fly solo." Then one day, while we were doing homework (it was coloring), I let him choose the medium.  I thought the choices were either crayons or markers, but James picked painting!  Wow. Although, he has painted in school, we had never used these successfully at home.  We blew through an entire weeks-worth of assignments that night. So now paints are part of our "things to do" repertoire.  During a recent snowstorm, I asked James if he wanted to color.  I got out a big pad of newsprint and he picked these cool creamy crayons that let you color and paint.   Well what are we going to draw?   Nothing interested him until I hit on "Mommy?" James nodded.  Purple round circle for a head which we then changed to paint with water.  What color is Mommy's hair?  James chose yellow.  Eyes?  Blue!  Then he drew my glasses!  It was his decision too!   This initiative is especially great to see, because, with James, I must "talk" him through activities.  Like a running monologue.  For instance:  Now we are going to color the sun.  Where is the sun?  What color are you going to make the sun?  Play does not come naturally to James so I must encourage and help him learn.  Next he drew/painted a suggestion of my sweater.  I thought he was done and made him sign his name.  But he wasn't finished. James picked up another crayon and drew my mouth.  He made me smile!   Me - the authority figure, the one who corrects him, redirects him, makes him communicate, makes him repeat activities until he succeeds, and won't let him stim his life away -  James drew me smiling!  Although my eyes were filled with tears, I was grinning from ear to ear.  You better believe David framed that baby up immediately!

Old Man Winter

Trying to stay positive. I try so hard to pretend that everything is normal with our life and that we can handle whatever comes along. But sometimes I get into a funk where I just want a break!  Did the snow plows really need to leave a mound - several times the size of my car - in front of James' sensory gym?  In the entire neighborhood, this is the spot they deemed worthy to put the snow, directly in front of a pediatric rehabilitation center for disabled kids?  Sigh.  Why do people throw snow in the street after it has been plowed to perfection?  This wasn't a dusting and my car can get stuck in - or skid - on those piles!  Not to mention the monster trucks and SUVs that blast out of their snow tombs, leaving massive ice chunks in their wake?  Isn't it actually a law that one must clear their car of snow?  And does the hot water valve have to break today when my landlords are away on a sky holiday and my husband must work and we are waiting for the plumber instead of attending a birthday party? More sighs.  Enough, go enjoy a ridiculous day of movies and music with your beautiful son who, despite coping with some real issues, sure can show you the simple wonders of the world!

Normal is. . .

James, is a "special needs" child, officially classified as having "Pervasive Developmental Disorder - Not Otherwise Specified." He's Autistic, on the spectrum.  In other words, the kid ain't "normal."  My husband always says, "What did you expect with parents like us?"  Of course we would have a different kid! Right?  Then why does he force us to be so NORMAL?!

We greet everyone we come across (must encourage the kid to whom "hi" does not come naturally).  I wear jeans now - have to be ready to jump, run, crawl on the ground - and have pockets - and be machine washable.  I wear out sneakers in under a year (they used to fall apart from age).  We go out regardless of weather.  I get tan.  Go to the beach year-round.  I make dinner daily (well, almost, James definitely knows a take-out bag).  I vacuum and clean everyday. I have become social, a joiner where before I was an avoider. I am a proud to be a member of this unofficial gang where unconditional love is taught and practiced.  As one dad quietly explained to me, "We're family."

Then, again, the more I think about it, I believe James is teaching me to live paranormally.  I mean, sure I do all of the above, but does everyone wave at the day-laborers lined up on the street corners too?    The kid has no fear except violence, which he shies from.  He knows no prejudice but he has taught me to see society's biases and evils - and realize those of my own - with open eyes.  He has taught me so much about living, about trust and faith, about acknowledging and accepting the wrongs in the world, and not joining them.  He has undoubtedly made me a better person, just one that is a bit haggard, more shabbily dressed, and with gray roots in my hair.