Time Out City

New stuff is happening - James hit me!  He has hit people before. He has gotten slap-happy and smacked people. He has intentionally hit.  But this time? He hit his Occupational Therapist.  Later, the very same afternoon, he was reprimanded for hitting his father.   I thought he understood, as he became very sad.  He came over to me - with big puss on his face - and put out his arms.  He hugged me, looked up, smiled, and then pulled back and hit me!  WOW.  Time out time.  Has to go in and sit or lay on his bed.  Now this might not seem like a punishment, but it is in our house.  At night, James sleeps in our adult room while during the day, plays in his "his" room (where we sleep).  Bizarre set-up but the odd arrangements facilitated something called SLEEPING THROUGH THE NIGHT.  I do not mess with success regardless of how unusual it might be!  Therefore, having to stay in the sleeping room, while we are in the living room, invoked tears and whines.  James "got it" that time.
The next weekend, James was super-stimmy.  David attempted to break it up and engage him in something new.  James would have none of it and smacked his dad.  This time, immediate verbal reprimand and straight into time out.  James: our home is a zero tolerance zone when it comes to physical or verbal abuse! He understood.  Undoubtedly and unfortunately - mixed in with a speck of pride in having our kid show clear intention - we will see it again.

Beyond GREAT-ful

Once again, I humbly stand corrected, as James has blown my expectations out of the water.  

Since the beginning of Fall, he had been slowly sliding away. Officially, experiencing a temporary "regression." Personally? A horrifying experience! Watching helplessly as our son, my buddy, returned to behaviors we haven't seen since he was three.  WHAT THE HECK? He was twisting his fingers.  He was disappearing into his head, (to what we call "Planet Wang Woo"), where we had a tough time reaching him.  He was acting incredibly silly and throwing tantrums in the middle of intersections.  He completely stopped making a sound, let alone sleeping through the night. I hear all about set-backs.  But, when month after month go by, you start to lose hope.   It hard to take, seeing your son disappear back into a place you had fought so hard to get him out of.   I am not being pessimistic.  We have accepted our fate and try to face this life realistically.  Although distraught on the inside, we have learned to simply keep going.  

So?  What happened after we were being so big about all this? Just what has my wonder child cooked up for Thanksgiving week?   He has started paying attention and participating in life again.  He is once more interested in books and puzzles.  He has stopped crumbling up food on the couch.  He is working for his therapists.  His attention span has also returned.  He even willingly agrees to color (although he now insists using every color before finishing). Yahoo James!!  To top it all off, to make us weep and be grateful from our head down to our toes . . . during prayers last night, at the end where we say, "God Bless Mommy, Daddy, and James," my nonverbal son looks at us, nods, and adds "Gam-ma (and) Gam-pop."  

This Green-Eyed Gal

A mom friend recently asked if i was ever jealous of "normal" kids.  It was one of those moments where I was completely taken aback. Wow.  I never thought about it.  See, we only have one child.  I don't routinely think of James in comparison to other kids.  I am more focused on James' reactions in a situation than on the other kids.

I know his Dad feels this way sometimes.  I can see how he deeply desires to really play ball with his son, something beyond catch.  There is simply no way I am NOT jealous.  I am not that big a person.  I think it is more a case of just not allowing myself the indulgence.  I can not dwell.

When you realize you have a special needs kid, all the hopes and desires you have built up for your newborn are suddenly and seriously dashed.  It is horrendous.  You are petrified and, literally, mourn your loss.  Then you beat yourself up!  Because your kid is alive, and needs help, and there is no time or space for this wallowing.  But you have to - or at least I had to - so you can get up and move on.

We parents need to get over this initial grief because that is the last moment we can waste on "what ifs" and wrap ourselves in the epic disappointment.  Then, when you can, brush yourself off, get going and don't stop.  You will see that your child will excel far above those initial nightmares.  You will be awed by magnitude of the seemingly small developments. Sure, you will see children and situations that outshine your child and your situation.  Unfortunately, you will also see far worse.  It all doesn't matter.  We can't be sick, we can't stop, and we certainly can't die.  Ridiculous but truer false statements have never been spoken.

I have to remind myself that good things ARE also happening. Lately, I have been dwelling on the "cons."  The main one being: James has stopped talking.  You can imagine how, in my mind, this is overshadowing the good. He can't get anything out, no matter how he hard he tries, opening his mouth wider and wider.  His speech teacher is pretty stunned, not to mention his devastated parents.
James' self-stimulation, his "stimming," is out of control.  I leave for a second - bathroom, doorbell, kitchen trip - and he has crumbled pretzels all over the couch.  I have almost have to sit on him!  He has also begun a behavior that I do not care for.  Being very silly, giggling and laughing, or simply refusing to work for his Occupational Therapist. I caught him trying to hit her on Wednesday.  I was heading to the bathroom and they were in the hallway.  He had plopped on the ground and refused to get up.  He went to hit her feet.  JAMES ARTHUR!!  And he stopped.  I never interrupt a session, but this would not be tolerated.  Get up NOW.  He did.  NO hitting! He nodded and was better for the rest of the session. Bizarrely, James has been having good days at school.  Only one unusual incident happened. When play time was over, James tried to sneak the ball out of the closet after it had been put away. While it's not the worst, it is more of the same, intentionally being bad.
So quickly, after whining about these downturns, let me list some positives . . . At a recent birthday party, James agreed to have his hand - but not his face - painted.  When asked, he picked a flower and then chose the color red.  It was quite an elaborate design and I was impressed with his patience.  We also had a houseguest for the weekend, and James was completely at ease.  He also "participated" in Halloween.  After coating his Captain Kirk shirt in his lunch, I squeezed him into a homemade Wiggles shirt from 2-years ago. Then as hundreds of kids descended on our block, he excitedly ran up and down the stairs as we gave out candy.  When it became too much, he retreated back to the top landing and watched a video.  It was the most he ever acknowledged the "chaos."  So, if James can do it, I can at least TRY . . . Acknowledge the chaos and patiently work through it.

Sir Poopy Pants

I thought it fitting to have this blog accompanied by an image of James yelling at me.  I am definitely berating myself over my failure.  I am having no luck toilet training James.
With everyone - from home to school to outside therapy - participating, we took James to the bathroom hoping to catch him. No luck. James held his urine until either the bath or at night.  He held his bowel so long we had to use suppositories.  We did this for over a year.  It was insane and crazy and STUPID.  Luckily, his school hired a new teacher.  After a few months, she put a stop to this method.  Apparently it works for almost every autistic child.  She had seen a child hospitalized as a result of this method and thought that was the path James was heading down.  After another year, James was finally comfortable again to go in his pull-up.  His teacher takes James to the bathroom only when she takes the boys who can use the toilet. Unfortunately, he usually holds the entire school day and goes at home.

On vacations, we have tried centering the day around the bathroom.  Having to stay on the toilet for extended periods of time.  In the past, we have also tried having James naked all day.  After going ONCE, he then held his urine.  For 13 hours. Sure he went on the toilet then but was shaking and sobbing hysterically.  Nothing was learned.  I, of course, tried this method for the entire vacation.  He was hiding from me by the end.  The next week, back at school (and in his diaper), James would sob even when he went in his pull-up.  Another great association was formed.

I read James a zillion potty books.  A great one is "Everybody Poops" by Taro Gomi.  It shows how everybody eats so . . . . Great right?  He totally generalized (it helps having a mom who explains things left and right, wether he listens or understands or not) and STOPPED DRINKING.
Thankfully he is off suppositories and poops daily.  It has helped his mood greatly.  Probiotics help.  It makes the stool soft so it is easy to pass but not too mushy that I can't dump it in the toilet as demonstration.  I have said Bye-Bye to a lot of poop. His diet is monitored and recorded as well.  An even balance is extremely important.

So this summer, I went for bathing suits and boxer shorts sans diapers.  It worked like a charm after one "accident" in the living room.  Then James decided to pee outside.  No problem, it's my house, go for it James!  I did not pressure.  I only talked about the potty.  Finally I told him that when he felt like he had to pee, go to the bathroom.  Eventually he did!  He went and sat on the potty.  He didn't pee.  Instead he then ran outside and went on the porch.  Still I was SO SO happy.  He did this two times.   We were tooling around town, running errands, diaper-less.  No accidents.  He'd pee at home.  Then one day, he just began marathon holding again.  No clue why he stopped.  We are back to square one.

God Willing

We who live in the universe of special needs kids are by no mean normal ourselves.  I have noticed that most of us, regardless of age, background, race, sex, are a superstitious lot.  Today for instance, the Occupational Therapist said James had an "excellent session" as she ran over to the wooden coat rack and knocked.  This is a highly educated, well-respected and seriously experienced woman!  I do this too.  Of course I am lazy, saying "knock on metal" or plastic or whatever is at hand. But I still somehow, deep down, expect this to work and ward off evil.  I guess after all those years of having your child repeatedly fail to meet developmental milestones, you are in shock when something happens as it should, or should I say, "normally." Obviously it was a fluke, right?  This might help to explain my current state of extreme joy/intense trepidation.

James has had an amazing September.  Starting with, for the first time in almost eight years: JAMES SLEPT THROUGH THE NIGHT FOR AN ENTIRE MONTH.   Physically I look like a different person.  I can't explain it, my face just looks different. Can you imagine how James feels?  How this impacts his day? His appetite has increased.  He is not whining about getting dressed for school.  His therapy sessions are consistently productive.  He is eating lunch - still protesting about the noisy cafeteria - but eating. They are starting to see that James has amazing receptive language.  I have told them this but I sure it was doubted as he didn't consistently perform.  Now, daily, he is following two step commands without batting an eyelash.

Even at home, life is improving.  We went out to eat at a pub and James made it through the entire meal without watching his DVD player.  He didn't even ask for it.  It was there and he knew it.  This was his decision to look around and to inspect the carved graffiti in the wooden booths and to listen to us chat.  This is nothing short of amazing!  Last night we read book after book, laying on the bed with our heads touching, propped up on pillows, for TWO HOURS.

I hear his words, often garbled, but all the time.  He runs into a playground all by himself without waiting for us to catch up.  He stops to greet the staff at the front desk in his sensory gym. He carries a handful of quarters to the parking meter and loads it up.  He opened a bottle of seltzer independently (okay, he missed the glass).  He is attempting (and succeeded this morning) to open and shut the toothpaste AND squeeze it on his brush. He mastered a new step in his discrete trials at school, within a week.  This never happened. 

Is it just sleep?  Can it be partially attributed to his "regularity"? A change brought about by this doctor's addition of ortho-biotics in his diet.  I have no answers.  I just know that I finally wrote down all the amazing changes in black and white, and now, well, now I am in freaking trouble.

Happiness Runs . . .

James' great aunt passed away last month.  It was heartbreaking.  She had cancer that spread all over.  She had obviously been sick for awhile and had ignored it.  Her death forced me to look at many things I had never truly considered.  AND it coincided with a period when James and I were alone at the beach.  Meaning, without adult conversation, I had quite a bit of time in my head.  Frankly, I was shocked by some of my reactions.

First of all, I decided James should attend the wake. Previously, I would have kept a child, especially an autistic child, away from such an event.  But this woman was lovely to us, and especially, to James.  How could we honor her?  Then I remembered the viewing of my husband's Godfather, where his fellow police officers entered, saluted their comrade, wished the bereaved well, and exited.  It was all about respect. James could do that - and he did.  First, at the casket, he shook his head when I explained the body was Aunt Connie.  He walked to an easel where photographs were displayed and pointed at a recent image and nodded.  What could I say?  The boy was right. Then we went up to her husband.  As he bent down to greet my son, James reached up and gently cupped the devastated man's face in his hand.  He held it for several moments as well as his great uncle's gaze.  It was a lovely, lovely gesture that was greatly appreciated.  James may have not understood but he could see intense sadness and great pain, and then he desired to comfort.  How could I have denied my son and myself of this incredible experience?

That is where spending too much time in my head got dangerous.  Well, not really, I never said a word aloud to anyone but my husband - and now here - but I silently fumed when I heard relatives call the wake/viewing "barbaric." Similarly, it was insinuated by some that the day-long hospital visitations by my mom and dad in-law were overbearing and unnecessary, (even though their sister was coherent until almost the very end).  Even a few stated they did not go to hospitals. Then one night, my dear sweet husband innocently said something to the affect that laying in a hospital bed wasn't a high quality of life. Unfortunately, that's when I cracked. Everyone is missing a key point here:  DYING - regardless of quality - is a part of life.  We increasingly shove it in a corner, sanitize it, compartmentalize it, so we don't have to see sickness, aging, deformity, or pain. Somehow it is the person's fault: they are old, they smoked, they didn't "take care of themselves." The caring of someone who is not going to get better, someone who is going to die, has some how become unworthy.  I find this terrifying.  Who the heck has the ability qualify life?

As a friend slowly succumbed to terminal cancer, we had amazing conversations about death and dying.  Once, to her protests, I flew up to the hospital because she was alone and the person who shared her room had passed away AND was left lying in the next bed for hours.  This was a person she had conversed with for days.  She more feared how her dead body would be treated than death itself.  I am incredibly awed by this experience.   It opened up areas of conversation that were previously taboo between us.  As speech became increasingly exhausting, we would read the same books and communicate our opinions in writing.  She was young, beautiful and died of lung cancer when she never smoked a day in her life.   I am so glad I "intruded" on her that day.

I realize I feel so strongly because James is autistic.  I gave up my so-called life when I became his caregiver and advocate.  No more office in Times Square or rides in chauffeured Lincoln Town cars.  No more heels and designer dresses and expensive salons.  No more apartment in Chelsea and celebrity acquaintances.  Of course, I miss all that stuff on occasion, but not for long.  What James has provided in return - besides hugs and kisses - is far, far greater.  I would have missed so much without him.  He has given me deep insight, compassion, empathy, and joy.  He has taught me how to read people and situations intuitively.  Simply, he has opened my heart.  Most of all, James and his father have made me realize the importance of living and somehow enjoying life every day.  Once his dad told me that happiness is a choice.  I get it.

James, Mach II

A month off.  It was WONDERFUL.  It felt normal - I felt normal. Just woke up everyday and lived with my kid. We played, laughed, ate, slept, whined and cried.  Did chores. Went on outings. There were times that we stayed outside for the entire day.  There were others when the tears came fast and furious because the rain made outdoor play impossible. Although Dad only had a week off, James and I were okay.  For the first time ever, for an extended period, I didn't feel ALONE with him.  I don't know when we turned that corner, but we did and I am so, so grateful.

James walked in to the local store with me, every morning, for coffee, newspapers and - of course - a donut.  He learned to hold his donut bag up so the cashier could see it.  He was adorable.   I decided to make a trip to the library with him.  We had gone before but it had always a trial for him.  Occasionally, I would luck out and get him interested in a book.  This time, I stuffed everything I needed in my pockets so my hands would be free for a potentially tantruming kid.  That didn't happen. Instead, I was uncomfortable, my phone digging in my butt, after sitting on the floor for 45 minutes reading book after book.  Then I told him he could pick out five books to bring home.  And he did exactly that.  He even told Grandma "five" on the phone.  It was garbled but she understood.

I tried having him walk into the grocery store instead of riding in a cart.  No problem.  Confidently striding beside me, squeaking away, (his "happy" noise), as rude people gaped at my kid "with three heads."   I even made a few stops occasionally, making James get out of the car every time.  Some protesting but zero tantrums.

At home we jumped on the trampoline, played ball, splashed in the pool, watched movies, read books, listened to music, worked on puzzles, AND colored.  James has this new, bizarre and wonderful desire: to color.  He has always always HATED coloring.  At first he would drop the crayon or throw it.  Then he would make a mark before chucking it.  Hand over hand was the only way to get him to make a mark.  Last spring I could get him to make marks independently (although begrudgingly). One day on holiday, he pressed the "to color" button on his talker. Yeah right.  BUT, lo and behold, James wanted to color. It took five pages in a coloring book to satiate his appetite!

Last but not least, I am stunned to report that James smiles and laughs and hugs way more frequently.  I thought he was affectionate, happy and loving.  Boy, did I NOT know what a affectionate, happy and loving kid was!

Now back home, James is off and running: Dribbling a basketball while walking to the corner store.    For the past two nights, coloring hasn't been enough, James has been painting his homework.  Greeting daddy with hugs when he walks in after work.  Laughing at funny things on TV.  Yelling "MOM" when he fell off the bed.  These are all new things that have happened in the past three days.  I am thrilled. I am in shock. I am thankful.  I am terrified.

Lucky Friday the 13th

Our summer starts on Friday the 13th, the very instant that 

school bell rings. Then James and I have an unprecedented month off!  YAHOO!!!!! The only thing that would make our holiday perfect would be if Dad could be with us the entire time.  Unfortunately, he has business to conduct. Sigh. I know, I know, some one has to fund our lavish lifestyle!  

I am not sure how much fun we would be anyway.  The first issue at hand will be getting comfortable without pull-ups.  I know that will be quite a challenge for James.  I hope he will move on to peeing and pooping and discovering how his body works.  We will talk about the toilet, read about the potty, and clean up anything that happens.  All while Mom talks her head off. Rugs will be rolled up.  Towels will be at hand.  No rushing. No pressure. No yelling. No schedules or routines. In the yard, on the trampoline, in the pool, wherever.  Just living life and seeing what happens to our bodies.  I truly believe that if I can get James to understand how his body works, he will grasp the concept of the toilet.  Somehow it has become demonized in his head.  Somehow he believes that it doesn't apply to him.  

I have to make it HIS idea.  Although I encouraged and cajoled and pulled my hair out, in the end, James decided when not use a bottle, to sleep through the night, to avoid casein, to try and use words.  Wish me luck (okay, AND sanity and strength and patience and wisdom , , , )!  See you on September 13th.

Sleep is Overrated

James had a great speech session this morning.  He said, "I want ball." several times.  Yesterday, he said "Jump" in reply to "What do you want to do?"  His therapist looked up but didn't react quickly enough for him.  She was searching his bag for the appropriate board for his communication device.  Then he touched her arm and said "Jump" again, nodding.  She made him say it four times before he got in the trampoline.  She wanted to make sure that his occupational therapist heard him as well.

It is wild that James is having these developmental spurts, now, as his sleep has been so erratic.  The pattern is having a full night sleep, only every other night.  Sunday he woke at 4, Tuesday at 2:30, Thursday at 4:30.  I don't know how he does a full day of therapy, school and play.  I get by with caffeine. This kid is pure adrenaline!  My neighbor claims that her son would go through sleeplessness every time he was about to master something new.  From her lips to God's ears; her son is a budding genius!

One more week and we have a month-long vacation.  Our summer FINALLY.  Mom and James hanging at the shore - without diapers - with interludes from our sugar daddy (hopefully LONG visits).   No therapy or school, just concentrating on living life and all that entails.  Meaning: discovering how our body works, peeing and pooping without a pull-up - hopefully, eventually, in the toilet - using words, eating with utensils, writing and coloring. Poor kid doesn't know what he's in for.  Poor mom, she's actually looking forward to it!

The Ability to Speak Does Not Make You Intelligent

I hate to write when I am sad.  Don't get me wrong James is doing well.  Complaining and protesting but working and playing hard.  It is sometimes I get down about how hard it is to have a special needs kid.  James is the easy part.  A few hugs and kisses and I am recharged - okay and some caffeine, too.

I feel let down a bit by his school that schedules this yearly "Fun in the Sun Day. " To me a more apt description would be: chaotic, loosely organized, mess in the parking lot.  James has serious transition issues.  He has come a LONG LONG way but he is far from conquering this demon.  Now James can usually survive an event with prior explanations and descriptions.  But quick changes from activity to activity spells disaster.  SO rather calming my eventually confused and hysterical kid and spending the remainder of the day reading books in the classroom (like the past two years), I kept him out.  He was able to do some make-up session at his sensory gym and we had a visit from traveling friends from California.  After James long illness, I felt he needed more structure then that school day would provide.

I also feel let down by his sensory gym that slowly changed his afternoon speech schedule from 3 to 3:15 to 3:30 to 3:45. Today when I was told 4:15, I said, I am sorry we can't make that time, please cancel for me.  Then I felt like crap.  He desperately needs speech therapy.  He is working and working well for his current therapist.  But I pick him up from school at 2:30, in a half hour we can be home but we would have to leave again in another 30 minutes.  James likes to take a walk or play ball after school.  Then he has a snack.  Then - hopefully - he will poop.  By 6, the bath is drawn.  Daddy comes home, time for homework (if  any), a movie and dinner.  If the routine is not followed, if he is rushed, James does not poop.  When he doesn't poop, sleep is hindered, either waking in the night or extraordinarily early, and the next day's school/therapy is seriously hampered.  It took six and a half years to get James to sleep through the night.  It took a year to get James to pee/poop in his pull-up after the disastrous 30 min schedule that made him hold his urine until he was in bed and need suppositories to poop.  I know he is seven but, developmentally, he is a baby.  So the gym just called.  James appointment is 3:45.  I'll take it, but, am still sad.

The third downer I am experiencing involves observations I made this week.  As James grows older it is something that I have become increasingly aware.  I am so used to rude people staring or making inappropriate comments, that I sometimes get it a mind set of "us" and "them."  But it is far worse.  What I see is the prejudice coming from kids with disabilities toward those with a greater degree of disability.  I know all kids want to fit in and cliques are a part of life.  Unfortunately, I see this happen during times of adult supervision.  I see therapists and parents condone the kids actions and words.

From a child with physical disabilities:
Why can't she speak?  Oh she has problems.  Yeah, she's stupid.  Silence from the father.

From a child with sensory issues (who could not put on his socks and shoes) about an older child who was making unusual humming noises (as he quickly donned his socks and shoes):
Why is he making those noises?  Oh. he can't talk.  He's weird - everybody talks. Silence from the therapist.

I guess I am especially saddened by the lack of direction from the authority figures.  Especially when these figures would be quick to correct an inappropriate behavior from my son.  Well, these are inappropriate attitudes.  How can we ever expect to join society when acceptance among those - also on the spectrum - is so divided?  Sigh.  Seriously, what am I thinking?  Direction from grown ups?  We are constantly choosing sides.  Relationships, not to mention countries, are irrevocably torn over sports, politics, and religion.  Thank God James doesn't understand prejudice.  I wish we could follow his example on this one.

James has "JUMPED"

As Opa would say (when something has improved greatly), James has "jumped." After a week-long vacation and an almost equally lengthy illness, James roared back. He is talking even more consistently. This time the change is that he is responding to questions.  For instance, when he was trying to shove me out of his room, I asked him what was going on.  He didn't respond, so I asked what he was doing. "I'm poopin'" WOW!  I left.  (Aside: Toilet training will not be conducted until the month vacation at the end of the school session.  James has just returned from a week of diarrhea and that was not the time to start.)

James is also soaring in this ball playing.  He is thisclose to making a basket in an adult sized basketball hoop.  Yesterday, he kept hitting the rim and the net.  I am so excited!  Where is the camera when you need it?!  His new gym teacher also praised his abilities and skill with a ball.  Go James!

His ability to pretend and his interest in doing so have changed as well.  As he was getting better (and therefore growing a bit bored), I was making up games left and right.  The one he liked was taking couch cushions, pretending they were islands, and playing catch (careful not to drop the ball in the "water").  Of course James inched closer and closer.  Soon our cushions were touching and then the game mutated into who could tickle the other off the island into the water.  Oh he LOVED it. Sometimes he would roll onto the floor just to hear me scream OH NO! This morning, Dad was tickling him in bed.  James rolled to the edge of the bed, looked at me and carefully put his foot down before pretending to fall, smiling the whole way, loving our "concern." What else can I say but ADORABLE!

I hope this behavior translates from home to school.  He is back to form at his sensory gym but is still getting upset at school.  I know it is a long day for him, considering his week-long virus spent listlessly on the couch watching television. Unfortunately I also think he notices the change from how he is treated at home and at school.  I expect James to talk and communicate to me.  I include him in what I am doing and why. They do this at outside therapy as well.   I am not sure if they can do this at school all the time.  When I entered on Wednesday, the first day back, he was screaming hysterically.  I have heard him cry - unfortunately a lot - but scream?  I let his teacher try for a bit. She is the authority - and an amazing one at that - and defer to her.  When she acknowledged me and tried to show James that I arrived, I stepped in.  I dropped to my knees. It took me a few seconds to get his attention focused on my face.  James, James, why are you crying?  Is it because "R" is crying?  "YEAH" he said loud and clear.  Okay then James, that's all over now, right?  "MAMA" he said and nodded. And what happens when Mommy comes?  He turned around and said, in his own voice, not high pitched one I hear sometimes when he tries and can't quite get out the sounds, "BYE-BYE."  Everyone was astounded and clapped and cheered.  I have no idea why he doesn't talk at school but he will!

This lovely viral bacterial infection also introduced us to yet another pediatrician.  There are several in this practice.  I have heard about this one as he has recently opened an Autism Center.  After declaring James well on his way to recovery, we chatted about James, his schooling, therapy, eating, sleeping, and toilet training.  He was impressed with James and his ability to communicate and to understand.  He wants to explore James' gastrointestinal issues.  He was extremely interested to learn that James shuns cheese and dairy (even pulls it off pizza). He thinks James might be doing it because he can't process dairy.  The doctor also feels - and this is the blockbuster - that this might be hindering toilet training, especially considering how well James had just listened and understood the tests that were just done to his body.  Who knows?  This is definitely worth checking out.

Ready to Rock

James has had zero problem returning to school and therapy. He has jumped into his schedule with bells on.  Oh, he'll occasionally complain and protest, but he does his work.
Me?  I miss my son!
I drive him around to therapy and school.  I make sure he has all his meals, vitamins and supplements, that his home is clean and easily accessible, that he completes his listening program, and is brushed, joint-compressed and bathed!  YIKES!  When the heck are we going to PLAY?   I need an unlimited amount of time to tickle the heck out of him and play made-up ball games.  Then, lo and behold, James came down with a bizarre summer fever that lasted less than 24 hours.  So, for the day, he stayed home from school and therapy.  Thankfully, by the afternoon, he was fever free and ready to rock AND mom got her wish.  Every Wednesday should be at least a half-day break! I get so tired of doing everything that I HAVE to do and that I SHOULD do.  Luckily, Sometimes I get what's good for me.

Be Careful HOW You Wish

When James was little his transition from place to place or activity to activity was HORRENDOUS.  Full on tantrums in the street.  His special preschool assigned him a one-on-one paraprofessional because they were worried about his behavior on their many stairs.  So, we began using a little photo album.  We had pictures of school, of his sensory gym, of all the objects and rooms in our apartment.  We had a special section for the beach house and even a separate book for family and friends.  It worked.  James still complained, loudly and seemingly endlessly, but no longer attempted to slam his head into the concrete.  I considered that a huge development.  Soon James understood my words, regardless of an image (although the photos still exist for reinforcement).  It was great!  I LOVE having to explain something to my son!  Again, he'd occasionally protest, but he'd accept his "fate."  As time went by, James wanted to know more and my words had to grow.  I introduced "First . . . then . . ." and even the bribe "If. . . then . . ."  Very proud of myself, I was.
Fresh from vacation, James is on to a new phase.  NO.  Perhaps it was the influence of his toddler cousin who is obsessed with the word (so much so that his mom joked about changing his name)  But I am not sure.  James understands  - what is next, where we are going or what we are doing  - and beautifully gorgeously clearly shakes his head "NO."  He makes a noise too but so far, it is unclear. What do I do?  How do I deal with this? So far, it is: "Sorry James, I have to wash your hair."  Oh the sobs!  Yesterday at school, he protested so much that he drenched his shirt with tears and sweat.  I know we can deal with this.  I know it will all work out.  Perhaps he is aware of the upcoming, month-long summer vacation where we shall concentrate on all things POTTY and is just preparing for the inevitable knock down brawl. Who the heck knows!
All I can say is: Awareness rules but it can sure be a bitch.

PHd in Scatology

I have to cut myself a break.  Its okay to be sad or  disappointed or even down right angry. Acknowledge it so I can move on! Today was James' awards celebration at school. It was an intimate gathering in his class. His teacher made a digital montage of the year in pictures that played on the big media screen while she handed out the awards.  Then the school psychologist and the speech teacher gave achievement certificates.  It was lovely and sweet and James sobbed, howled, and cried through the entire event.  He begged anyone to get him out.  He tried the speech therapist, his occupational therapist, even another parent.  I tried all the tricks to calm him although I knew nothing to work.  I knew he was constipated and wanted to go home.  We drove home, James listening to his therpuetic listen CD.  I pulled over 10 minutes in to the half-hour "session" to change the CD for the final 20 minutes  His OT thinks it might be to intense for him so I am carefully limiting the exposure.  Obviously it's working because he was great at his uncle and aunts house for Father's Day - even with two toddlers.   Happy as a clam.   As for the cause of his extreme upset-ness at school?  Poor sweetheart didn't even make it up the front stairs before he went in his pull-up.  I have to figure this potty thing out.

James does not go to the bathroom at school.  This year we have seen him pee in his pull-up and that is HUGE.  Previous teachers and administration put him on a schedule to "catch" him.  Took him to the bathroom every 30 minutes.  This schedule was adhered to at outside therapy, at home and even at Grandma and Grandpop's house.  James simply stopped going.  His diaper would only be full in the morning.  As for number 2, we had to give him a suppository every few days and when he'd finally go, he'd be sobbing and hysterical.  So I stopped the ridiculousness of the schedule and he eventually would go at home again.

Thank God for his teacher.  She fought the administration with me, and James no longer has to follow the 30 minute schedule. It is a proven, potty training program that works for almost all autistic kids.  For the rest?  Some wind up in the hospital with bladder infections, bowel obstructions and even ruptures.  His teacher says it in a nutshell: "James is his own man."  Now James, comfortable again, occasionally pees in his pull-up in school but NOT poop.  The only time he did, we wound up going to the pediatrician the next day where he was diagnosed with strep throat.

I am trying to figure out how to get him to use the potty, but so he thinks it is HIS idea.  We tried the "naked baby" method. 13 hours later, James was bent over, miserable, with the most distended stomach.  When he finally went - on the toilet - he sobbed and shook.  No lesson learned.  Like an idiot I did this for three days.  Stupid stupid stupid.  Back to square one.

Please don't suggest running water, pouring warm water over him, or other simplistic tricks like treats or rewards.  Believe me, it has been tried.  We read potty books, we have an open bathroom door policy.  James has even sat on my lap and read books while I use the toilet.  Talk about stage fright.  It is weird he understands, he gets that we do it.  He empties his diaper into, and then flushes the toilet.

I have him eating so much fruit and fiber so he cannot really "hold it" for too long anymore.  For a short while he was pooping at the end of the bath as the water drained and would then quickly get out.  Freaky yes.  Could this somehow translate to the toilet?  Maybe!  It was the bathroom.  We would clean up and flush everything away.  Sadly he stopped. He was probably on to me.

Warning: Rant Ahead!

I hate how our society is being ruined by bad apples.  And it's not just a few anymore. Doing things incorrectly, illegally, immorally, and/or unethically seems to have become modus operandi of the world. It's fine as long as you don't get caught.  And if you do, well, hey, it was worth a try, right?

NO!  It's wrong.  Don't cut across traffic risking lives because you have to make that turn - go around the block.  I understand that you know where you are going, but blinkers are not for you but for other drivers and pedestrians. Use your directionals when making a turn. Please don't run across a busy street.  Just because I see you doesn't mean I can stop my car in time. Stop double parking because it is convenient, park in a spot and walk your kid the block to school.  Thank God they CAN walk!  And for heaven's sake, put down the phone and stop texting and chatting.  Pay attention drivers AND walkers.

Monday I noticed a man taking extra shelves that didn't belong to the bookcase he was buying.  He got through the checkout and was rather pleased with himself.  Security caught him on the way out while checking his receipt.  He laughed and shrugged it off. . . and left without the shelves.  So this is why we have to feel like criminals when we exit stores and must prove that the register print-out matches the items in our cart?

Awhile back I was involved in an accident while stopped at a red light.  A van didn't stop (texting?) and slammed into me, pushed me in to the SUV in front of me, and that fella into another car. Wow.  Ambulance, hospital, rental car, insurance nightmare. All is A-OK.  Now I am being sued by a passenger in the front car over my "complete negligence."  What?  The police report actually absolved me of all fault.  My insurance company told me not to worry, that it was common.  The driver who hit me was here illegally and had no license, so they were suing me instead.  I went to the hospital with this woman.  She was fine.  I was in the stretcher while she rode shot gun.  I should have known some thing was up when everyone knew her at the hospital where she walked in and was on a stretcher when I left.

I am not going to get started on people using the streets as their trash can, dropping litter as they go.  Or those who do not recycle when it is so freaking easy these days.  And respect?  ll I hear a lot about it but see none of it.  I think it means respect ME, cut ME a break, let ME go first, and the hell with you and anyone else.  Sigh.  These are just the piddling, everyday life things.  Forget about corporate and political greed. As a society, we don't have a chance.

I am even more acutely aware of this in my life as the main caretaker for a special needs kid.  And being his mom throws me into a whole other level of crazy!  I can't imagine what life is like for "high functioning" special needs people, regardless of disability. How do they function about this madness? I feel humiliated, degraded - abused even - on a weekly basis.  How must they feel every day?

Last week I got a jury duty summons.  The system is set up where you can either postpone your service or serve.  Neither option is possible for me.  Twelve months a year, I take James to occupational therapy in the morning and then to school. After school, we have speech, two days a week and another occupational therapy session once.  James' school,  pediatric rehabilitation center, and his pediatrician all provided me with letters attesting to his schedule and the role I played in it. Armed with these documents and his birth certificate, I went down to the Supreme Court offices and stood in line.  I saw how easily everyone was getting their deferments.  I relaxed.  No such luck for me.  I had to answer a crap load of questions: Why wasn't he being bused? Did James have Medicaid? Why didn't I have a home health care aide?  Did I really think all this therapy would help?   After all this, I was asked to pick a date when I COULD serve.  It took all my patience not to scream: DID YOU EVEN READ THOSE LETTERS?   I simply said that I was not going to lie, that serving jury duty was currently impossible.  And then she told me it was fine and that I wouldn't be called for another for two years.  What?  So I just had to humiliate myself for ten minutes first?  I am not trying to get away with something.  I have an autistic kid - who, yes, is COMPLETELY benefitting from such a rigorous schedule - who needs to be taken care of 24/7.   I immediately thought of the mom I know who has to do this every year for a handicap driving permit AND she has to bring her disabled daughter along for the hours-long wait.  Once again, I guess I got off easy. "Easy" is measured way differently in our world.  

To Err is Human (Unless You're Mom)

  

I am having a hard time this week. Reminding myself to be positive and that worrying about the unforeseen, the unpredictable, and the unpreventable is a complete waste of time.  Have faith, plan and hope for the best, and TRUST, in God and the universe, in myself, in my husband, and in my son and his extraordinary-ness!  If - and when - things go ka-blooey, then I can deal with it.  Sounds good.  Sounds deal-able.  Don't worry about things over which you have no control.

Then after planning like crazy (about all the things I think I should have control over), I go and make a ridiculous, completely preventable mistake.  For some reason, I had decided that THIS Sunday was going to be Father's Day. Meaning, there was only one week of school left.  I would only needed a certain amount of boxes of chicken nuggets and tenders for James' school lunch.   Of course, he eats the organic, free range ones with stone ground whole wheat coating.  I know, how did he find out he liked them anyway?  His mom has bought every kind out there and these are the only ones that he eats consistently at school.  Of course he would eat Burger King too but that's not going to happen!   It also means I need fruit tarts for breakfast.   Yep, organic, real fruit. And Hebrew National hot dogs.  I have enough of all these.  But not for TWO weeks!  Yikes.  That goes the same for other groceries and toiletry products.  Not to mention my depression in finding out that our mini-break (before the summer school session starts) is two weeks away. SOB!  Talk about mental anguish.  I am truly crushed.

So James better step up to the plate here and, especially for his mom's sake, continue his amazing streak.  His astonishing accomplishments include: writing his name recognizably; consistently using words and approximations, including sentences; climbing the grown-up rock wall; AND, perhaps not coincidentally, sleeping through the night again!

Smitten

Sure I get annoyed at my son.  I am not pleased at the return of his sleepless nights. His protests and complaints about things in life with which he does not agree (like going in the house when he wants to stay and play ball even though thunder is rumbling) are events I could live without! But, still, I melt when I watch him sleep, when he takes my hand in his and brings it to his lips, when he smiles from ear to ear knowing he successfully said "lollipop." We are truly blessed to have such a crushingly sweet little boy. It also fills me with joy because this is not a learned skill but, rather, a personality trait unique to James.  I love seeing James emerge despite his autism.
As a baby, James was curious, outgoing and friendly, engaging people and animals wherever he went.  When the darkness descended, that baby disappeared.  I can't express enough how wonderful it is to see that child again!   James hears a noise, he turns to see what it is.  He hears a child and stops everything to watch them go by.  He has even caught a little girl walking home from school in his ball playing trap.  She wanted to play! The big boy downstairs starts to play basketball and James flies to the window to watch.  Of course, this has it's drawbacks.  A child is having their own meltdown or is simply upset and James goes wild with despair.  If the lunchroom is too noisy, he cannot concentrate enough to eat.  Fortunately, these problems are workable.  I assure James that the upset child is being taken care of.  That, in itself, is amazing: James can listen to my reassurance and process it!  At school, he "reads" books to direct his concentration away from the noise.  When that is too much, noise canceling headphones are used.  We will get past this.  It is much better then the previous James that didn't/couldn't/wouldn't notice a screaming, bright red, fire engine racing by.
So we are holding steady.  Still no luck with the potty.  Still no increase in using words.  Lots of improvement in his awareness, his agility and - of course - his ball playing skills.  Even more importantly, James is engaged and happy.  Meaning, we are happy! We are actually enjoying our son.

Anticipication

Waiting seems to be the name of the game these days.  Wether it is sleeping with one eye open dreading the reoccurring nightly invasion of our bedroom.  Driving around wasting time before an Occupational or Speech Therapy session.  Sometimes, if we get a great parking spot, we hang out in the car and listen to music (and hopefully be patient), waiting for the same.  At home, I gently and slowly encourage James to eat his apple, his strawberries, whatever healthy snack I have laid out. I try and turn play into counting and naming games.  Because he willing participates if I let him stand at the top of the steep, concrete steps to play catch, I actively court danger.  He counts, names colors, and even attempts speech - all as I stand below with my heart in my throat.  Let me tell you this kid has amazing balance and dexterity.  Generally, I try not to push too hard, mostly nudge. I have found that if James thinks something is his idea, I have him in the palm of my hand. I believe that my continual quiet suggestions and encouragements have helped James formulate some ideas of his own as well.
On Saturday, we pick Dad up at he bus stop.  This week, James decided, a bit prematurely, that it was that time.  I explained to him that we had to wait. Daddy was still at work.  At first James listened and we kept playing ball, but soon he trotted over to the car, opened the door and settled into his car seat. After a while, he got out and opened the driver's door.  He then flicked every switch, putting on the radio, the hazards and the windshield wipers, in attempt to start the car.  Amazing.  It might sound like a normal development, but I was blown away. James doesn't learn the way average children do.  I wish I could simply show him how to do a task and then he would be able to imitate and eventually master.  If it was that easy, success would be ours with potty training, with fastening buttons or snaps, with coloring, with writing - hell - with speaking!
How is James able to go from complete inability to brand new skill in a matter seconds?  He watches the boy downstairs play basketball and knows how to pass the ball without looking.  He watches soccer on TV, once, and now can bounce a ball up with his knee then kick it with his foot?   How did he go from being unable to complete the "animal walks" at Occupational Therapy - even the simple ones for months - to mastering a squatting duck walk?  And then go on to independently attempt the crab, when they haven't even started, let alone demonstrated it, yet?  All from looking at the pictures of children in the animal positions?  His OT gave me a lovely compliment too,  She said that I was right - that James can write his name.  About three months ago, I told her that, although it is a mess and pretty much unrecognizable, that I believed that James could write his name.  Like his language, his written shapes were very, very approximate, but these shapes were consistently repeated.
I am not sure why James advances in spurts but he does.  We wait, we wait, we wait.  Day in, day out, we slowly plod along. Then, unexpectedly, BOOM.  He suddenly can shut the computer and close it in the secretary.  He comes out with a long sentence, pretty much inaudible, but we gather it involves YouTube and Bob the Builder.  I still don't know but I got a silly fun song up quickly. "Big fish. Little fish. Cardboard box.  We're all having fun."   That's my life these days.  Incomprehensible, silly and repetitious, but at least we're all having a blast.

Stim . . . and stim some more

One of my greatest desires - besides having James use words, besides having James use the toilet - is to know what is going on in my son's mind.  I love when I overhear a toddler explaining something to his mom or dad. Sometimes it is completely illogical and wacky, and sometimes it makes startling sense.  I was lucky enough to get a peek today.
James and I were playing ball on his bed.  Of course, like most games, James eventually tries to "stim" (shorthand for self-stimulation).  You have probably seen an autistic person flapping, spinning or toe-walking.  Some line things up in a row or obsessively watch wheels spin.  James likes to flip things around.  Like balls in his lap or puzzle pieces clattering on the floor.   Of course, I try and mutate these stims into more acceptable forms.  Playing ball is great.  Add speed to the mix and you've distracted him!  Quickly dump the pieces on the floor, make that great clatter, then sweep them away and encourage him to start the puzzle.  I have always been told by therapists about the importance of "redirecting" stimming.  I think James HAS to stim.  I just have to create a balance where he doesn't zone out and prefer the stim world 24/7. So, as James began to stim with three small balls (and not throw them back to me), I decided to just ask him.  Why not - he knows what stimming is.  "James, why are you stimming?"  He smiled at me, put his hand to his chest and said "Hah-Pey."  James are you stimming because you are happy?  "Yeah," he said, nodding, "Hah-Pey!"  Wow.  Incredible, in fact!  James said a word - twice - and a new word at that! We were having a conversation.  Unfortunately this little bit of information means I have a lot more work ahead of me.  So stimming is the coping mechanism that enables James to experience situations and feelings, which is, basically, LIFE.  I wracked my brains thinking of an "acceptable" stim/release but soon began to giggle:  drinking, smoking, biting your nails, tapping your foot, drumming your fingers?  Maybe James' stims aren't the worst.  I think I have to work on the WHY he needs this stimulation. Comfort?  Confidence?  Frustration?  Inability to communicate? All of the above and more!  Yikes . . . wish me luck!

God Said, God Said, NO

Who said God doesn't listen?  Definitely not who ever coined "Be careful for what you wish for!" Why, oh, why did I ever write the words "bring it on" and hit the "publish post" key?  This week has been a tough one. David and I are beyond exhausted. And James?  He is flying high.  Literally.  A few nights last week, James started crawling into our bed in the middle of the night and going back to sleep.
He used to do this about nine months ago.  We somehow solved it by giving him our bed and sleeping in his room.  It was a glorious.  I felt like I had a new lease on life!  But, through this newest little blip, we coped, just thankful that James was going back to sleep.

This week?  James has been getting up at 2 or 3 AM. Period.  We make him stay in bed until 6.  I am crushed to be going back to the old sleepless schedule.  How can he function?  What am I saying?  He always had amazing days on little sleep.  Take today's Occupational Therapy for instance, his session was great, while conversely, I am a mess, living on coffee.  I can't imagine how David is functioning at work.  I am in awe of my mom friend from the sensory gym.  Her daughter has been living on minimal sleep for over eight years.  She functions with two kids and cracks jokes at the same time!  She drinks espresso and, sigh, goes to the gym now.  I don't want to go to the gym but I guess I am going to have to do something.

Anyway, picked up the golden-haired, sleepless wonder from school . . . and he had a good day with less protesting than usual.  Cranky at the end but his teacher was very impressed with his endurance and functioning level!   He is now seated on the couch watching television and unconcerned that I am typing at the computer (usually a major no-no).  James is also giving me great audible words or their approximations, immediately, on demand.  It's like his sleepiness is counteracting or diluting whatever usually keeps him from responding.  This week he has been very curious, too, in unusual and different ways.  He has cleaned out his toy chest several times - he never even cared about it before and we use it for storage, not toys.  I think that has to change.  James also decided he wanted to eat in our galley kitchen.  We always use the dining room.  His neighborhood walks varied, as well.  We walked further, choosing different streets.  James is usually a creature of habit but I still ask him to make many choices - even if it is going to be the same ones.  He is shocking me left and right.  I am so tired I think I might be hallucinating!  I sure hope not.

Big Boom

Amazing! In this picture our car looks absolutely normal.  It wasn't.  I was stopped at a red light, third in line, in fact.  I saw a van zooming up behind me and assumed he was going to veer into the empty right lane. He didn't.  Full speed, full on, into me.  I then slammed into the SUV in front of me and the SUV into the car in front of him. Wild.  Our little Mini is quite well built, no?   Regardless, I was a complete mess.  Couldn't see to dial my phone.  Luckily, calling my husband is a button away.  Then I saw my glasses lying on the seat.  They had been thrown off my head!  After a while, I realize that the accident-causer is telling everyone that is boss will pay for everything and not to call the police.  What?  No one called the police?  I can't feel my knee!  I quickly called the police and they instructed me to roll up my windows and remain in the car.  Soon the police arrived and gorgeous firemen surrounded on my vehicle with axes.  Wait, no!  I can get out.  Meanwhile, David is racing from work in a cab, accompanied by our good friend (who would not take no for an answer - thank God! We couldn't have done it all without her). When they arrived, I started sobbing anew.  My knees hurt, my neck hurt, my back hurt.  We ladies rode down the street to the hospital in the ambulance and David got the car towed to the dealership.  Mini has roadside assistance.  Towing is free.  Seriously.  He also rented a car.  My accident was "conveniently" adjacent to was a rental agency.  I got a clean bill of health from the hospital - bangs, bruises, aches but nothing broken.  We cabbed home and rested.  Meanwhile, David went to retrieve James at school.

We are incredibly lucky.  I am fine.  I hurt, but I walked away from the accident.  AND it happened after dropping James at school.   So?  Bring it on big man.  You obviously think we can handle all this. . . and this is how we're "handling" it.  It's in your hands.  We will continue to plod along, and try to do the best we can and do what we believe is right.  But that is all we can physically do.  The rest is in your court.  Guide us.  Direct us. Point us in the right direction.  We accept our fate.  And why do I believe this potentially ridiculous-sounding bit of blind-faith?  Well, this morning, James came out of Occupational Therapy and tried to climb in the front seat of the car.  Our little car only has two doors but the rental is a sedan.  "No James," I told him, "You get in through the back door."  So what did James do?  He got out, opened the back door, and climbed in.  In his life, James has never opened a door that couldn't be pushed or pulled.  The act of holding the handle, lifting up and pulling out is a three step operation.  Previously, two-step "activity" was his limit.  I am so happy it is the weekend.  This is one for celebration!

County of Kings

James was a happy boy this week, so that means a happy mom and dad.  I spent the day trying to figure out why.  It's not like the week was smooth or uneventful.  There were even a few potential trials.  Lunch was held in the loud, cavernous and noisy cafeteria again (after a hiatus caused by a leaky pipe).  One of his favorite teachers and quite a few of his classmates were out sick for days.  His outside speech teacher is on maternity leave now.  And we even went out on a date and left James with a babysitter.

So is it the warmer weather and the sunshine?   Being able to run around the school playground after lunch must make a difference to his day.  Is it the extra exercise from his neighborhood walks?  He did not appear to mind so many schoolmates being absent either.  Perhaps he even enjoyed the added attention?  He also transitioned seamlessly to his new speech teacher!  Is it her long dark hair (how can a seven-year old have a "type"?!)?  And luckily, James not only knows his sitter from his school, he adores her.  I think he thinks he had a date too.

James diet and therapy routine has been consistent.  The only additions are a new CD for his Listening Program and an increase in wearing a weighted vest.  He has his own now and wears it throughout his day.  It seems to be helping him focus and allow him to be present and participate, with less bothers and distractions.  Unfortunately, he is still stimming like crazy. Thankfully, that can be easily interrupted and James be reached and distracted!  So?  Get over it mom!  Be thankful and keep on trucking . . . .

Our Pinnochio

I have no idea how or why this week is different from last week.  Why are James' reactions - to the same old things - different?  Why is he able to respond to me today when previously, he couldn't and/or wouldn't? Hands down, autism is one of the most bizarre experiences of my life.  It awes me daily, sometimes to the point of tears, those of frustration, of exhaustion, and, sometimes - unbelievably - of joy.   

This morning, James climbed on top of me when I wasn't roused by his bounding into the bedroom.  I peered through my lashes to see his head only inches from my face, smiling.  Where the heck was his Dad?  I don't open my eyes.  Now I'm getting kisses. For some reason, I still don't move.  "Wake up Mama." Holy frigging . . . WHAT?  I popped up and gave James the most massive tickles.  David walked in, hearing the squeals and screams from my "torture."   Why, how?  Where did this come from?  Yahoo! James understands what "wake up" means. James knows and can use a sentence!    

Yesterday, we were playing with two big plastic balls.   I had the green ball held out in front of me and asked "What color is this ball James?"  He didn't respond, actually shook his head "no." Then he looked up at me, smiled, and held up his ball, "pur-ble!"  And it was!  Okay, he didn't answer my question.  But, still, I love his taking command of the situation.  I know purple is a word he can say.   I am bombarding him with questions and choices, dying to see what reaction, or words, or whatever, will pop out.

Recently, the local pastor (and unfortunately, since this happened, i must add the adjective "late" here) said "Hello young man," to James.  I prompted James to wave.   He did, and then clearly added "Hola!"  "And 'hola' to you too," he chuckled.  For the past two years, James has had a classmate who speaks Spanish.  So how wild is that?  It all sinks in! My cutie is picking up a second language before the first even comes out!

It is not like James is talking all the time, or even everyday, but these incidents emphasize that he is capable of so much more. I have to feed off these amazing events and keep pushing and plodding along.   I must not forget the elation, and remember that I must and should have hope.  I will continue to expand James' world.  He will continue to learn and grow.  He's a real live boy who has wishes and desires and preferences and talents.  As his father says, rather aptly, James is our very own Pinnochio.

Rough Patch

Despite this sweet smile, James had a few unhappy bumps by the end of the school/therapy break.  On Easter, he became increasingly agitated and eventually deteriorated in full upset-mode with major tears - all over his one year-old cousin.  Of course, in my eyes, it is my fault.  I never thought to prepare him for this inquisitive little toddler.  I mistakenly thought James was used to the little guy, but unfortunately, James was used to a baby who was held, ate, or slept.  Not a tyke who waddled around, poking into places and people - including him! To make matters worse, it was happening on HIS turf, Grandma and Grandpop's house.  Thankfully, there were periods of calm, eating on the deck and ball playing outside (until he almost ran into the busy street).  After the adorable "interloper" left, James actually looked at me, patted his chest, and said "Bay-Bee."  Oh no you're not - you are a big BIG boy! Seven years old! Life returned to normal and we went home with a happy camper who greatly enjoyed the Chuck Berry CD his other uncle made for him (the uncle with the "acceptable" 6-foot tall cousins)!  An unexpected new development is James' love for Chuck Berry.  It started with "Route 66" on Walt Disney's "Cars" soundtrack. and now he's chooses this compilation.  Just wild to see his preferences in action.

The following day saw a minor freak-out in a familiar, boardwalk pizza parlor.  Something was bothering him and he wanted to go.  As tantrums are not usual and protests are short-lived, I was shocked how quickly his agitation escalated.  By the time dad got back with a slice, James could not communicate.  In fact, he was terrorized.  We left, and he calmed in the car.  

Later that day, an attempt at two-wheel bike riding (with training wheels) turned into yet another melt-down.  Again, I did not expect such a major reaction as James is a professional at the tricycle.  I understand that three things at one - balancing, pedaling, AND steering - are very difficult for him. By the end of the session, James was a mess.  Like most if the things we do with James, we just kept trying. Perhaps, considering the two, very recent incidents, we should have aborted the try until the next week.  But we didn't and I fear it will be even more work to get this kid - who has an incredible memory - back on that bike!

I assumed everything would fall in place when we got back to our routines, especially considering this week's gorgeous weather.  I was pleased to see that James wanted to resume our daily neighborhood strolls.  The first day, he inspected all the new flowers and blossoming trees.  Yesterday, after an amazing speech   session, we went on our "constitutional." James got a treat at the corner deli - a Hawaiian Punch.  It was late and he was a bit giggly and silly, even spilling most of the drink.  At one point, he started putting his hand down the back of his pants.  "No James, hands out."  Okay, he listened.  Then he started giggling and  did it again.  "James, I said no hands in the pants."  Smack!  He hit me. And he laughed.  And the hand went back.  "James, No."  He looked directly in my eyes. Smack. That was it.  "Give me the drink, no treat."  Took both his hands in mine and took the short way home.  First, I just held one hand but he kept hitting, so any freedom was curtailed. We went home - and he did without much of a fuss.  I was so upset. This was deliberate.  It was intentional.  We do not hit.  And he didn't get it?  Or he didn't care?  Where was my sweetheart who was kissing the hand of his speech therapist only hours before?  When we got home, we went potty (no he did not go, no luck there) and I went in the kitchen to unpack his school bags.  He pointed to the top of the refrigerator and said "olli-pah."  "What?  You want a lollipop?"  Head nod, "Yeah. pop."  Normally words get rewarded instantly.  Today was different.  "James, did you hit me?"  Another head nod.  "No James.  Boys who hit do not get lollipops."  And, thank God, James burst into tears.  I know he got it, finally, because he did not ask again.

Gone Daddy Gone

Spring Break approaches in a matter of hours!  Although I feel like James has JUST gotten back into the swing of school and therapy after a winter of viruses, I am looking forward to this holiday as if he had a perfect attendance record.  I know it would be great for James to stay here and try to fit in as many make-up therapy sessions as possible.  I just can't.  Mom needs to get away and I am indulging her.  Away from driving, away from schedules, away from concrete.  I need sky and surf and sand - and a lot of it!

My main concern in life is James.  I care only if and how he eats, drinks, and sleeps. My job is to get him to and from school and therapy, monitor his progress, and then to keep him on his toes at home.  I am so wrapped up in him that I forget myself.  I am not saying I am "selfless."  It seems more physical than that.  Like how I cut his nails and then forget to cut my own because, in my head, I just did that.  It's insane and bizarre to not even think of looking at myself in the mirror before I head out the door. I rarely remember to have a drink. These are not conscience choices, but still, my behavior has to stop.

Five years ago, I had a cerebral stroke and wound up in the ICU for two weeks then the hospital until I could have a heart operation.  Two days immediately before, a pediatric neurologist told us that we should look into a long term care facility for our less-than two year old son.  For the previous six months, I had been jumping up and down trying to get medical attention for what I saw was happening to James.  And now instantly, I went from being an over-protective, over-anxious mom to this?  James was even sitting in his stroller "reading" a book at this point, not even exhibiting the behaviors that I had been listing.  Overnight, James had gone from being a happy toddler to a fearful one who would not venture out of his stroller, let alone out the door of the house.  His words disappeared.  His only interest was to wave a stick back and forth in front of his face.  He was lost and we could not reach him.  So, day after day, little by little, I took him out the door, then down the stairs, then around the block, then to the store, then through the park, and eventually - and successfully - the playground.  At home, I turned to the television.  I knew every Wiggles song and dance.  I "enjoyed" it so much that finally James got up too.  I forgot to eat and drink.  I did not sleep much (and neither did James).  But it didn't matter because, slowly we were getting him back.  After a special visit from my dear friend who worked (and still does) with autistic children, who gave me a crash course on the terminology, we got immediate attention from the doctors. One who suggested James should be "institutionalized."  BOOM, clot blew through a hole in my heart (surprise unknown birth defect!) and into my brain.

So, now, after surviving, you think I would know better?  Take care of myself?  Eat, drink, go to the doctor?  Nope, nope, and nope.  I had a migraine, first in over five years.  My cardiologist believed I would no longer suffer from them after he repaired my heart.  As the years went by, I became a believer.   Last week, I woke up with one, and was terrified.  David pushed his day aside and took care of James  AND made a mad dash to the gallery and back.   He also, understanding my fear of doctors (terror actually), stepped in and made a doctor's appointment for me and then took me there.  Now I've started on my rounds of routine and special tests and visits.   I also am making an effort to take care of myself.  Drink the seltzer down before the bubbles go away.  Shower, wash face, brush teeth, comb hair.  Take vitamins.  All the things I do for James, do for myself.

I know this might sound ridiculous to someone who is not in this position. How could you not drink when you are thirsty?  My concerns are so pushed down that I don't even notice.  I think it is tied to my concerns about mortality.  At first I didn't believe this could be true.  With my stroke, I faced my demise big time.  I am fully aware that death can come to anyone, at any age, at any time.  On paper, I am prepared to die.  We have made special legal arrangements for James.  But in reality?  No one will be able to give James the happy, active, loving life that he has now.  I want him to continue to grow and flourish and I have to be there for that.  Did I think that if I ignored my health, I was ignoring the fact that I am going to die and leave James alone?  I trust God for everything, but my ability to do this is not admirable.  I have no choice.  SO . . . I have to give this up too.  I can't control what will happen.  BUT I sure can get to the doctor and take care of myself on a daily basis, so I will be healthier AND happier for longer, for James, for myself, and for my poor neglected husband!

The Great Outdoors

After the three huge snowstorms and a couple dustings, we have greeted the sudden about-face in the weather - sunny and 60 degrees - with awe and elation!  We had a rental car for a few days, and James rode with a mixed look of wonder and bliss on his face, as wind blew in the open window. The back windows in our little car don't open, so James got quite a treat!  He never even protested when Dad put on is own music (a rare occurrence).

Being able to run around outside must make such a difference in James' life.  This weekend, he was able to independently open the door and run around on the porch.  It must be a great feeling, especially when he has to ask for almost everything. We were at the beach too.  While it was more crowded than usual, the huge sand piles blocking the entryways are still there.  We enjoyed climbing up and over, seeing the top of the fence posts at our ankles!  Later, James refused to play wiffle ball.  He wanted to "stim" with the bat in the trampoline (a new desire that we quickly denied).  Unfortunately, our refusal ended the backyard session that day, as James could not be persuaded or distracted into doing anything else.  If he couldn't use the bat inappropriately, well then, he was going to sob.

Monday is always a rough day for James.  We get up early to make the trek from the beach to school.  My poor worker bee's day doesn't end until after an afternoon Occupational Therapy session. Unfortunately, the center has pushed his appointment back 15 minutes.  No warning or explanation, just a reminder phone call about James' 3:30 appointment.  It didn't dawn on me until we were going to the center that his time is 3:15.  We pick James up at school at 2:30.  Our house is a half an hour away from school and the pediatric sensory gym is about 40 minutes away - meanwhile they are 10 minutes apart.  Our current solution is to drive around for an hour, using some of the time to let James listen to his therapeutic listening program (30 minutes, 2 times a day).  Unfortunately, James, who cannot tell time, starts to get agitated and wants to go to the gym.  We manage to find a parking spot (not readily available at this time), but the damage is already done,  James is a complete agitated MESS.  He takes off his coat, hangs it up, takes off his socks and shoes, stowing them under his chair, gets his communication board and presses "I want" "to jump" and "I want" "to play." Correct and appropriate - but now the therapist is late, talking to the previous mom.  A completely understandable situation but not for James who does not understand why the time was changed or why, when he is doing everything as he is supposed to, he can't go jump on the trampoline.  He is sitting nicely in a chair, waiting and shaking, tears streaming down his face.  I am right in front of him, repeating over and over again how we have to wait.  Luckily another therapist tells James he will take him to jump.  It calms him.  He has a decent - but not great - session.  This gym has recently moved and expanded.  They are in dire need of structure and an office manager.  Instead, they have two co-owners, who are therapists with a full client roster, who micro-manage and rely on freelancers and part-timers.  Someone needs to be accountable and keep things running for them.  I have left phone, email and a written message.  None of which has been received by James' therapist (one of the owners).  I am considering dropping Monday afternoon.  It is getting warm. We can replace the chaotic session with outdoor time, maybe a organized sport?  Why should I have to work so hard to get my kid back from what they destroyed?

This afternoon, the power was cut without warning as the electrical company worked on our block.  Our landlords weren't home to admit them, SO they cut the power, without so much as a note on the door.  James had just started watching his was first movie of the day, and was not pleased by this turn of events.  I waited for about fifteen minutes, jumping through hoops to distract and entertain him.  This was extremely hard because he couldn't listen to music either (I have now sworn to buy emergency batteries for his little CD player).  Wait a minute - I see the workmen breaking down their area.  Are they leaving?  I abandon my child and run outside.  One man launches into an explanation of the problem.  After about five minutes, I stopped him (as politely as I could) and told him I have an autistic child - who I have left alone - who does not understand what no electricity means and is extremely upset. For brevity's sake, please don't explain the problem, tell me how to rectify the situation.  If they can get in the building, they can get my power back up.  Okay, it's after the school bell, and I luckily catch my landlady on the mobile.  She can get home in 40 minutes.  I run and relay the message and the workers say they will wait.  As much as I bitch and moan about my landlords, the husband and wife team really came through for me: she with her speedy return home, and he with his numerous phone calls to get to the root of the problem.  I am humbled by their concern.  My agitated mom "act," (i need a better word as I was not acting!), also helped as, during their work, power was restored to one part of the apartment for James.  Big sigh.  Crisis averted!  Did I mention Dad is gone for another lengthy day and not returning until we are asleep?

Thank goodness more warm weather is predicted tomorrow.  I am pooped and it is only Tuesday!