SEVEN

Seven is a loaded number, so many associations, and so much superstition.  I am trying not to, BUT I can't help but wonder and hope and pray that this year is another big one for James. Last year brought sleep, increased awareness, and a return to his general, happy disposition.  He also had a growth spurt and weight gain.  Of course therapy and school played their important roles, but me thinks the major addition of a daily good night sleep has played the heaviest hand in these positive developments.  James' self stimulation has increased and I am told this corresponds to his increased awareness.  Sort of like his brain's way of handling all the new sights, sounds, and experiences that it is letting in.  I am not pleased that this "stimming" now occasionally gets in the way of daily life, both in school and out.  Increasing his "sensory diet" should help (including the implementation of a weighted vest at school).  We will see.  Regardless, it will all have to wait!  Between the two feet plus inches of snow that delayed our return for school AND the boy who developed a stomach bug as soon as we got back, we are done with school and therapy until next year.   Tomorrow, if I think James can make the trip without the need to be close to a bathroom, we are heading back to our little ski chalet.  Merry Christmas everyone. May the new year bring only wonderful developments for us all!

Let it Snow

All is calm this week.  Of course, this petrifies me!  I am a worry wort and can't stop looking for and anticipating what's next. James is still stimming this week, but is redirect-able, "reachable," AND sweeter than ever.  Even in school (where the fight for the weighted vest actually looks possible). All good! So why can't I relax?  No, it's not the unfinished shopping or the cards that aren't out.  Rather, my focus is on December 16th, James birthday.  As it approaches, I find myself growing increasingly apprehensive and excited.  A new year brings  a lot of expectations, a lot of melancholoy, and a lot of unknown. So, to shake it off, we are going all out!  Pizza party in school and another shindig at home with Grandma and Grandpop.
Regardless of my nerves, I know we are ready for Year Seven. Bring it on.

Bitter & Opinionated

Unfortunately, that is how the week has left me.  James has grown increasingly "stimmy" and harder to redirect.  He has started hitting in school and once outside.  After he was chomped in the lunchroom on Monday, he has even attempted to bite me.  Luckily, I say "attempted" because he only touched my hand to his teeth and nodded before bursting into tears. While I have stressed "no hitting" and "no biting," and directed him to let me know what is wrong (and he can somewhat, God bless him, even without words), he was still hitting at school. On the advice of his outside Occupational therapist, I made what I thought was an innocent request at school: could he wear a weighted vest at times, as mandated by the OT?
James has a lot of sensory issues.  He has 5 hours of Occupational Therapy (OT) a week mandated in his Individualized Educational Plan (IEP).  The vest is part of his already implemented sensory "diet"  that includes brushing and joint compression, tactile play, and a lot of pushing and pulling. This is just another step.  He wears it, on occasion, at OT, at Speech, and at Physical Therapy (PT).
Lo and behold, I have stepped into a minefield.  It seems the school administration is against acknowledging sensory issues. What?  It's not scientifically proven.  Oh. And he has been receiving these services, funded and recommended by the Board of Education and the City of New York, since age two? So, here we go.  Mom does not enjoy being a thorn but that is exactly the role I am about to take on.  Wish me luck.

Majorly Great-ful

• 

Thank you for my beautiful son.

• His gorgeous, expressive eyes and his radiant smile.
• His sunny, sweet disposition.
• His desire to play with me (that has grown exponentially from disinterest at age 2).
• His babbling that has replaced his silence (in the past year)!
• His insistence that his mom will understand him when no one else can (and his patience with my frequent delay in that understanding).
• His willingness to repeat things until he gets them right.
• His diligence in the completion of his 37 hour work week (plus commuting)!
• His sudden ability to sleep through the night (after 6 years? this should be number 1)!
• His about-face decision to try different foods.
• His innate and unquestioning ability to live in two places.
• His love of music and speed.
• His love of the outdoors and sports (that has changed my life).
• His unintentional and unconscious participation in helping me recover from my stroke and enabling me to ask for help.
• His patient, sweet, lovable, and infinitely enjoyable dad (who is mighty fine looking, to boot).

Stimmy

Of course I still feel guilty.  Last week, we took James out of  school and therapy while we successfully got away for three days and two nights, alone, as a couple.   And James didn't kill Grandma and Grandpop!  They claimed to actually enjoy it (God bless them) even though there was a Nor'easter and outdoor play was not an option. I know it wasn't easy for them as James has been known to sob on the kitchen floor when he can't go out.  Maybe he only pulls that with Mom (or so I hope). Luckily for us, it didn't rain two hours away in Pennsylvania (Adamstown, Antique USA), where we ate fattening food, drank to our heart's content, and wandered around aimlessly (except when it was mealtime).  We found a family-owned lodge with a restaurant and a tavern.  Met a fair share of sweet, lovely, friendly, and polite (seriously) ex-Mennonites.  Saw lots of practicing ones as well, especially at the weekly market/auction.  And hit a ton of stores filled with antiques, collectibles, and a lot of junk.  One store was only architectural salvage and I think my favorite browse of the the trip.  How I wish we had a use for a 28-foot gothic bar!  And one of those 12-foot stained glass windows were not going in our Mini. Seriously drool-worthy.  It's funny how different I felt being away from James for more than a day.  Other thoughts started to creep into my head.  Thoughts of hopes and dreams and desires, unrelated to James.  I didn't know I had any.  AT the moment, I can't think of a one BUT now I know they are there and hope they will resurface.   Except this time when our sweetheart is around.

What a Birthday Present!

Saturday was my birthday. Not only did James' dad get off from work, he even dressed up for me. He knows I am a sucker for the whole idea of formal-ish wear even at he park! In the morning, we went to the opening of an inclusive playground at 7 President's Park in Long Branch, NJ.  His auntie is the director of the non-profit wing of the parks and she asked us to go. Although James was not pleased about the speeches and then waiting for the ribbon to be cut - he had a blast!  We stayed about two hours, outlasting everyone.  James has come such a long way.  In the old days, we would have had to leave because he would not have waited or even understood having to wait. Besides, his attention span would not have held for the length of the speeches.  He would have lost interest in the park well before the ribbon cutting.  Saturday?  He played ball with us outside the official tent!  He also enjoyed watching a bigger boy playing football with his dad.  When it was time to go into the playground, the entrance was very crowded but James didn't mind and/or care.  After some initial trepidation, he trudged right through the crowd, patted his aunt in greeting, and kept moving!  He tried everything, running around, up, down.  Gorgeous playground, gorgeous morning!  But the day didn't end there.  We asked James if he was hungry and when he nodded, we told him we were going to eat out.  We had brought his DVD player just in case (but only dreaming we could attempt a restaurant after a day in an unfamiliar park).  But we decided to atleast TRY and headed back toward the beach house, to a local joint that James was familiar with.  And well, we just went in and had a lovely birthday lunch!  Can you believe it?  James has never successfully "participated" in TWO activities in a day (other than school and therapy). It was the best tuna melt that I have ever had!  What a birthday! Who says a non-verbal autistic kid can't independently give his mom a present?

Fall tis THE Season

Last week, Halloween started party season in our house.  This week, the Yankees won their 27th World Series, just in time for my birthday! Thanks guys! Next is our TENTH anniversary, then Thanksgiving, and in December we have the big celebrations: James' birthday and Christmas!  AND this year, the party is officially extended with the 1st birthday of James' littlest cousin.  Not to mention the beautiful leaves and the return of sweater weather!

But there is more behind my sunny outlook: I think I finally figured out what was bothering James.  I just couldn't put my finger on it, until yesterday.  James' dad commented that he thought the addition of PT (physical therapy) to James' after school schedule was taking its toll on our little guy.   James was super "stimmy," very quick to tears, and complaining to an extreme extent before any afternoon therapy.  At first I thought he was constipated but after we regulated him (apples and fiber!!), I assumed he was coming down with something. But James never got sick.  His therapist for PT is a highly educated (a doctor) and experienced, but she isn't loving. James responds best to a therapist who can be both sweet and firm.  I have seen him respond to "harsher" therapists twice in his life (he has had therapy since he was 2).  Both times, he improved immediately after removing them from his schedule. I think I was lulled into security by our comfort and ease at this particular center.  I requested a new therapist this morning and got one by 4 pm - his previous physical therapist from school! James loved his sessions with her so much that he wanted to go upstairs to her office even when it wasn't his scheduled time. Yahoo!!  Now I must beat myself up for not acting sooner!

Thankfully I am too busy to give in to my guilt. This week's project is programming James' communication device. It is a board with 8 places for icons.  When you touch the icon, it says the word or phrase.  There are 12 levels with 12 separate programable boards, allowing different boards for school, for Speech, for Occupational Therapy, for Physical Therapy AND home.  It is not only proven to help children to actually say words, it increases their confidence.  Luckily James has a dedicated and amazing Speech therapist who lives around the corner who has volunteered to help me.  Yep, I'm tearing up again, but it's out of joy this time, I swear!

Our Little Macca

Happy Halloween!  James "McCartney" was wearing his mustache on his sleeve by the time we got to school for a parade and party time!  Tonight we are running away to the beach for trick-or-treating tonight and a major parade tomorrow.  Dad too.  After a week of work and doctor visits, he deserves an extra day off.  On the other hand, James and I have had a PHENOMENAL week.  After a month of sad-sack posts, I am overjoyed to be writing that word.  James had a two-hour psycho-social evaluation on Wednesday.  He was an angel!  Sat patiently.  Indicated when he wet his pull-up by saying "pee-pee" and it was true!   It wasn't avoidance.  We went to the potty and returned without fuss.  He took out a snack, read some of his books.  When he got antsy, he sat on my lap!  Who is this patient kid?  James is also talking up a storm, to himself, to us, and to his speech therapist.  Even making a few words, correctly, for her (yellow, blue, white, green, pink, milk) and even a sentence: "play ball!"  Of course the session ended a few minutes early when James became terrified by another child who was having a serious meltdown.  My sensitive sweetie is hyper empathetic.  No matter, we have an entire weekend ahead to encourage his speech.  Two days with both my guys.  I can't wait!

Get Over Yourself, Mom

Mom is STILL apprehensive this week. STILL. James has made it through another week of school and therapy. Things have been met with some protest but he has been working.  I just feel that James is not himself and THAT is enough to bother me.  He isn't as playful and is more interested in "stimming."  James' version of stimming is tossing things around in front of him, sort of like the inside of a popcorn maker.  He wants to stim with his books rather than read them. I don't let him.  He wants to stim with puzzle pieces instead of finishing the puzzles.  Not happening.   He wants to stim with balls instead of playing catch. I keep engaging him.  After we play catch for a bit, he motions to me that he wants to put the blankets over his head like a tent. Okay. And he wants me to go with him.   Still fine.  But then he wants to bring in little balls and STIM.   At least he wanted to stim with me, right?  And not go completely into la-la land?  Oh who the heck knows!  I'm worried.  He's not sick.  He's not misbehaving (completely). Still, something in my gut says all is not right.
Enough with my unfounded worries (hopefully), on with the real and the positive!  My kid is babbling.  Trying to sound words out on his own.  First I heard "DAH DAH DAH DAH DA DEE DAH" and thought he was talking about Daddy.  He continued with his DAHs until a "DUH" popped out.  Immediately and clearly he says "Dumbo," smiling and holding the movie out for me.  We watched the entire thing, or, I should say the entire "MOO-BEE" (James' word for "movie").  The next day it was "DAH-WAH" for Star Wars.  And the following morning, the word of the day was Daddy.  James was awake but still in bed and his Dad was tickling him.  He started with his "DAH DAH DAH" rant.  Usually "DAH-DAH" is good enough for Daddy.  But not today.  James did not stop until he said "DA-DEE"!  He was so proud of himself.  I was also happy that Dad could actually hear it.  Although I told him about how James is practicing and sounding out words, absolutely NOTHING beats hearing your non-verbal sweetheart say your name.

Caution Contents May Be Vent-ful

As of the end of school Friday, I am going to just ignore this week.  James is a bit off.  Ups and downs. Constipation, relief, constipation. Happy and attending then "stimmy" and distant.  Nothing I can't help fix.  Lots of fruit and fiber.  Lots of puzzles and reading and coloring (homework ACK!!) to call him back to the now.  I have decided that I am the cause of his mediocre week.  My mood and that of good old Mother Nature.  All this rain and chill does not give us outdoor time!  I am ready. Time to vamoose. High-tail it from this rental and head to the open skies at the beach! Even in the rain.
So something sprung a leak in the bathroom in our landlord's lovely but ancient home.  Somehow it was my kid splashing the tub.  Then the smoke alarm went off as we were making popcorn.  We were asked: Are you sure nothing's on fire? Seriously.  We were making popcorn.  We are so oblivious and stupid that we need to be asked this question.  We wouldn't know or care to check, even though the alarm is going off and we are waving pillows under the damn thing.  Besides, a fire would be no big concern to us.  Not just for my or my neighbor's lives but for that of my autistic kid who can't and wouldn't know to escape on his own.  Last night the police knocked on the door.  I didn't answer because of the late hour, James was already sleeping and David wasn't home (big gallery opening). They freaked out!  "Ena did you call the police?"  Part of me wanted to scream, HELL YES!!!  I still have no idea what that was about.  I heard something about phones and perhaps their autistic son . . .??  I have had it with my kid being presented as the potential blame for things.  He wasn't even in the tub yet the leak night and was asleep for the other "events" (Thank God).  So now I am pissed-off mom.  I have had it with the heat being extremely low (or off ) during the day and I walk around in sweaters and scarves. Then at ten at night the heat is over-pumped to warm up the house and you lie in bed sweating.  It is off again a few hours later after you pass out wet so you wake up shivering.  Sometimes the wife puts the heat on quickly before the husband gets home.  What she doesn't know is that he sometimes puts it on after she leaves in the morning!  Once we complained about the radiator in the bathroom.  Since fixing it would be complicated, they suggested that we shut it off.  You know, since you warm up in the shower? Oh yeah.  And what about my kid who sits in the tub? Sometimes for an hour? And the jagged, rusty stair railings? And the cracked, disintegrating marble doorjamb?  And the rattling, drafty, old windows that we can't access to clean?  Some with screens, some not, some with gaping holes (not in the screens but along the crumbling window joints).  Or the lack of window sill in the rear bedroom because the wood is gone, rotted out? How about the fissures that run down the walls through the floors?  I know, I know, technically everything is still usable.  And If it ain't broke, don't fix it.
Please talk James.  Please talk and stick up for yourself.

Mom is a Basketcase

I am a little worried as James has returned to his old "practice" of complaining through therapy and "stimming" heavily to ease his anxiety.  He complains, almost constantly, but does the work that is requested of him. Although his therapists reassure me, reminding me that me that he has done this before, I am still apprehensive.  Actually, I am terrified.  Is this the beginning of a downward spiral?  I don't know if I can handle that again. Often James' periods of growth are followed by regression.  The old two steps forward, one step back.  I have seen speech begin and then retreat but then begin again.  Oh please, no!

In all of James' advances and improvements, I am most grateful for the re-emergence of the James before the onset of autism. While I delight at any speech or communication, I think I am even more thankful for the return of our happy, lovable, friendly boy: the smiles, the giggles, the approachability.  We have slowly watched him emerge from his cocoon of isolation. First with Mommy and Daddy, then with his therapists, and by spring, with children his own age. He even received an award for Friendship at the end if the school year!

I guess I should get over the lump of doom that has settled in the pit of my stomach.  I guess I should trust these therapists who have worked with him for years.  I guess I should judge by James' actions and not my fears.  This week, we had a friend over for dinner that James hadn't seen in about a year. Although James stared at first, he quickly warmed to this "stranger" (did he remember?) and by the end of the evening, everyone had to kiss him goodnight when we tucked him into bed.

This week, I feel that I have been seriously lacking.  I even forget his homework on Wednesday! Is this fear affecting my subconscious?  Geeze!  Hopefully venting out loud will help me . . . well, not forget, (there is no way I can do that), but help me. . . . get past my worries.  Not to let fear immobilize my ability to be James' mom and caretaker.

The Penultimate Trooper

It was going to be a long, busy weekend.  Events were planned for Friday night, Saturday AND Sunday.  I was apprehensive.  How was James going to make it through all of it, especially after a full week of school and therapy?I should have known better.  James was, as ever, the penultimate trooper. Friday was the easiest. We were going out to a swank party for our friend's 50th birthday party while James stayed home with Grandma and Grandpop.  Not only was he an angel boy, he was in bed by 8 PM.  PERFECT!  He needed his rest for the next day. A birthday party in New Jersey.  Thankfully it was outside (as James tends to get obsessed with their massive stairs) in an enclosed yard with swings and balls and a bouncy pit.  The hostess even hired an autistic-friendly "fun bus" (like an OT gym on wheels).  James wasn't keen on the bus, but when he saw the sweet gals who ran it, he changed his mind.   It is amazing that he is so swayed by beauty!  As requested, he completed all the "tasks" (mini trampoline, rock wall, slide) but then wanted to get off.  Funny, unlike the other kids, he saw the "fun bus" as work.  He preferred to run around the yard and play catch.  After pizza, it was getting chilly and they were moving the party inside.  Since James isn't a cake boy, (and since we started from Brooklyn and had another party the next day), we took the opportunity and headed down to the beach house.  Just in time to pick up Dad at the bus stop!  Now the next day was the BIG test.  It was his new cousin's christening. We already decided to forgo the church. Why test his patience and risk diverting attention from this important event? Besides, this way, James could become comfortable with the house before it filled with people.  And it worked!  My in-laws have an adorable cozy house with lots of rooms and stairs and James made himself quite at home.  So while the baptism took place, we wandered around and checked everything out. Unfortunately, he set himself up in the living room and wanted to watch his DVD.  Since he had already made it through Saturday without movies, I allowed it.  It gave him something to concentrate on as the house filled with "strangers."  I sat at the foot of the couch for most of the afternoon too.  These two "tricks" really helped to ease him.  He occasionally got up and wandered or got a tortilla chip from the buffet.  I know he was apprehensive as he kept catching my eye as he roamed, but he DID it.   No whining, no hiding, no having to isolate or calm him.  He took trips to the potty without issue too.  While having James in a corner watching TV is not ideal, it is progression.  When these guys had their engagement party, James began howling immediately and we left before it really began.  At their wedding, we lasted about 20 minutes more (although I must lay some of the blame with the late hour and the well-intending but tipsy party-goers). I am also sure that it helped that there was a beautiful young lady with brunette ringlets who gave him lots of attention and had no qualms about filling his silences during their "conversations."  Is "cousin-in-law" a term?  Sounds too distant or clinical for the appreciation that I feel for this little girl who helped my son feel comfortable and his mom feel "normal."

All in all, I think the weekend was a resounding success!  That said, THANK GOD we have no plans for this weekend.  Mom and Dad need a little relaxation time!

Good Pizza

It was bath time and James was chatting up a storm. "Da da da da dah! Pah Pah Pah PAH Pee Pah!" James said, smiling at me, as the water drained out.  "That's right, Daddy will be home any minute!" I said.  He nodded, (repeating a little more clearly without the babbles), "Pee Pah," and accompanied by "mmm" and chewing noises.  It dawned on me, "Pizza!"  James was so proud of me and I received another beautiful smile, and a funny "Yeah."  You better believe Dad brought James home a slice of pizza that night.  Later, after James scarfed down the whole thing, Dad asked, "and how was that pizza?"  "Yeah" said the pizza connoisseur of Brooklyn, nodding, "Guh Pee Pah."  It most certainly was.

No News is Good News

These kind of weeks - when everything goes smoothly - scare me.  Why can't I just relax and enjoy it?  What the heck is wrong with me? Well, at least James is enjoying me! I am exhausted because I have been playing (not redirecting, not "keeping busy," but truly playing) with my son since he got home from school.  How wonderful is that?  Besides our usual puzzles, books, balls, music, and movies, James is also back to his daily walks after school or therapy.  We still stop at the local deli and pick out a treat.  Yesterday James did something new. He picked out Hawaiian Punch but when he brought it to the counter, he spied the lollipops.  When he pointed to them, the owner's son reminded him that "Mommy says 'Only ONE treat.'" James wavered but decided on the drink and pushed the bottle toward the clerk. We left and stopped to hang out and watch the kids walking home from school.  It's at the top of our street and there is quite a "parade" at about three o'clock.   After a bit, James motioned at the cap that was in my hand.  "You want to close the bottle?" "Yeah," he said and I helped him. Instead of continuing on our walk, he trots back inside the deli, walks up and puts the drink on the counter.  Nothing happened. So James points at the fella, pushes the bottle toward him, points at the lollipops and nods!  We all burst out laughing.  Everyone was so proud that James understood the concept of ONE (but no one more than me).  He got that lollipop and the drink was stashed on a bag so James couldn't see that he still had that treat, too. Did I mention that he said "Mom" twice today? Once as he kissed my hand? I know, like father like son.

Will this year be Lucky Seven?

Blessing or a curse?  I am stumped on how to write about our INCREDIBLE summer.  In listing what happened, I am afraid our wonderful vacation sound boring and trite. How can I ever relay my joy and make you understand why I am so sad summer is over?! I can only try.

James and I were alone at first, with David visiting on weekends until he could join us for the final week.  Can you believe it? I was alone with my kid for days on end and really enjoyed it! We had FUN.  I'm not saying I never got angry or annoyed.  I just didn't have any scary issues or concerns or hellish crap that his autism often brings up.  No meltdowns, no inconsolable moments, no times when I couldn't reach or communicate with him.  

1) James slept through the night, EVERY NIGHT.  And, many times, was able to put himself to sleep without a parent laying at his side. This is a HUGE achievement. My sleep log shows that two years ago, he slept through the night about 8 times a month. Although until now, "sleeping through the night" meant when James woke up, climbed in our bed, and went right back to sleep.  At one point, he rarely went to sleep before midnight (with no naps and a full school/therapy schedule).  Can you imagine our delight that, after six years, his bedtime is between 8:30 and 9:30? And that ten is late? 

2) James ate well and tried new foods.  He ate tater tots (potatoes HAD to be french fries).  He ate all kinds of chicken - nuggets/fingers/filets (frozen, fresh, organic, fast food) - in a variety of places - house/backyard/a restaurant with cutlery! He had different kinds of pizza, (again fresh, frozen, sneaky

healthy). He even ate little pizza bites with soy cheese rolled inside whole wheat crust!  Before, pizza could only come from our local Brooklyn shop (he knew if it didn't). He had a push-up ice pop (those freezable tubes) and home-made oatmeal cookies.  The list could go on. I pray his taste keeps expanding. In the past three weeks, James has grown inches taller and packed on quite a few pounds.  Where ribs were sticking out, you only see a tummy!  Needless to say, most of the size-7 clothes (a size he moved to in June), is either too short or tight.  I won't even mention the never-worn school outfits that his grandparents gave him!

3) James enjoyed the bay in his own grown-up sized tube, feet on the ocean floor.  He didn't even want me to hang on the back (not going to happen kid)! As a little guy, James loved the water and would go in with ANYONE who would take him.  Then he became fearful and the bay (and the bath tub) became a vat of boiling oil to him. When we got bathing under control, we tried again.  At first, he sat in the pools that where created by the gaping holes in our beach's bulkhead.  He enjoyed that greatly, but wouldn't stay in the bay for more than minutes. Last summer, we splurged and bought one of those big, towable tubes with a mesh bottom.  He loved it. He could be in the water and still be secure.  At the beginning of this summer he wanted to be in the bay, but with me, in my tube. I am happy to say that this is no longer the case. James has claimed one of OUR tubes for his very own!  

4) James, who has a rough time learning new things, somehow knew how to pitch a ball to his dad (he loved it too, would do it for hours if you didn't stop).  Hitting wasn't great. He threw the bat at the ball instead of swinging and got frustrated when you demonstrated.  Every time, he would give his dad the bat, pick up the ball and start pitching again. If only he was a lefty!

5) Another first was that we stayed at a friend's barbeque for hours, until it got dark!  We were the second arrivals but by far not the second to leave! 

6) We went to two antique flea markets, dragging James along in his red wagon - and he loved it. Even waved or smiled at people who talked to him.

Sole dark spot: the lack of success in the potty department (which will be another issue, another time). 

Last note: This week saw James' annual IEP (Individual Education Plan) meeting.  Potentially scary and very nerve-wracking as this is where his special autistic school and all therapy is approved, added to, or cancelled.  James has a lot more therapy than many children, therapy (that we fought to get) which is called into question every year.  At breakfast David and I discussed potential scenarios and how we would react to them.  Then we went armed with our therapists' reports and our doctor's forms and with James' principal and his Medicaid coordinator.  It was all a non-issue.  Everything was approved.  I know he needs it, and it's not like we are scamming the government, BUT, in this financial climate, budget cuts are everywhere and we were terrified. 

I think a great vacation can be measured on how rested you are (very), how many pictures you took (tons) and how sad you are to get back to the grind (I cried)!  I must begrudgingly admit that, unlike me, James loves being back at school.  Can't be sad about that!

Let the Summer BEGIN

One more day.  Only one more day and James is on a three week holiday.  No therapy.  No school.  We have not had such a long break since we began this whole "alternate lifestyle" of school and therapy daily, year round.  I know he needs his rigid schedule.  He flourishes with structure and routines.  But I have learned that, just like neurotypical kids, HE NEEDS A BREAK.  I used to dread such times.  The prospect of being alone with James 24/7 is daunting.  He is demanding.  When not engaged, he lapses into self-stimulatory behavior.  When he wakes up at night screaming bloody murder and not calming or going back to sleep, it can be down-right terrifying, especially when you are alone and sleep-deprived.  This year, David can't be with us for he whole break (come on, SOMEONE has to work).  And for some reason (thank God), the prospect of being solo with James, does not instill fear in my heart.  My superstitious self is frightened to admit this out loud, lest I am dooming myself to hell on earth for the duration of the vacation, but I am looking forward to it!  For the past month, James has been sleeping beautifully.  He has only been up minutes at night to climb in our bed.  Okay, he was up twice this week (last night for two hours) but I am not letting that dash my hopes.  Before James "dark period," we would head to the beach FOR THE SUMMER.  I can't even imagine what that would be like now.  It only happened for two years because by 16 months this autism crap had reared its ugly head and I began my uphill battle of getting him help.  At first, I didn't even understand what exactly was wrong, I just knew something was not right.  Now, five years and 4 months later, Mommy and Daddy need a break too!  So, starting tomorrow at 2:30 pm, James and his mom are heading to the beach house and will pretend that spending three weeks potty-training a six-year old is normal.  Because, for David & I, this is normal, this is our life, and we are blessed to have it, our James and, most of all, each other.

Read Book!

James spoke to me. Yesterday afternoon, James said "read book" as he walked over to where I was sitting, holding out one of his favorites.  Okay, he dropped the D and the K but all the other sounds were perfect and what he was saying was unmistakable.  He used his real voice too, not the more high-pitched voice that comes out when he is "trying." So Mom (covered in goosebumps) and James read books for a good long time.  James is talking more and more. It is gobble-dee-gook but we can understand him and these approximations of words have become a daily occurrence.  It is amazing how many variations he can make out of Bs and Ps: Baby is BAY-BEE, Bubble is B A-BUH, Ball is BAW, Play is PAY, Book is BOOH, Gummy Bear is GUH-BAY-UH, Grandpa is GAH-PUH,  Pretzel is PREH-PUH. I could go on and I am BURSTING that I can add to this list. I've heard approximations of read, spider, purple, Wiggles, Bob The Builder, Robin Hood, lollipop, pizza . . .  

His language is by no means perfect.  Many people, even some educated and trained people, can't understand him.  He is not "cured."  And no, there was no one motivation or treatment or drug or food that figured in this dramatic change.  It was just James.  We have been working on him for over five years of his little life, at home, at therapy, in school.  Somehow, in that mysterious brain, James has made the decision to communicate. In his own way, James is talking, and God willing, this new talent will grow and flourish and he will not stop.  We are rewarding every ATTEMPT to keep him from frustration.

And it is working. 

Magic Man

I am terrified that the other shoe is going to drop (pessimist that I am)! Not only has James continued to enjoy school, he has also continued his sleep-through-the-night trend.  It has happened 6 times in the past two weeks.  James has more than doubled his previous count of 5 no-wake-nights IN HIS LIFE.  This week, he has added a new twist: James has gone to sleep alone.  We tuck him in, kiss him goodnight AND, for 3 out of the past 4 nights, James went to sleep!  What a major development!  What a big grown-up kid! Unfortunately this happens in our bed, and the light must be on, but it is still HUGE.  We are now fixing up the guest room in the beach house as a bedroom for ourselves.  If he continues to put himself to sleep for the entire night, he can have our old bedroom. 

Everything else is moving along nicely too.  James is eating and drinking more, trying new tastes every week (this weekend it was white iced tea).  He is still going to the bathroom in his pull-up, but at least he isn't holding and getting constipated. No suppositories!  We WILL get there. 

James has also been a fun companion.  We are really playing catch.  He has even desired to color (for a millisecond) and enjoyed homework.  James used to throw a writing utensil as soon as you put it in his hand.  Occasionally, when he is focused, James will follow directions, make a circle, a straight line, choose the requested color.  It is so exciting to see!  He is still enjoying books and puzzles and his trampoline.  And, most of all, James is loving the bay.  We were in the water both days over the weekend and he enjoyed it even more (If possible)!   

We stayed in longer too. Had him "ride" his two-wheeler bike to our little beach. Unfortunately, it is more like we wheel him to the beach. I think he has pedaled successfully about once.  No matter!  Time to get him out of the wagon (where we drag him around) and onto a bike.  He'll get it.  We just have to keep showing him.  These past weeks have been so positive that I know we will get there (my mantra these days). Can't wait to ride bikes around the block with our guy!

Best Weekend EVER

Seriously.  James had a great weekend.  He slept through the night on Saturday and Sunday night, twelve hours and ten hours.  I can count on the fingers of one hand the amount of times that he has slept through the night, since he was born.  And then TWICE in a row?  And he's not sick?  Nothing short of amazing.  If only we lived somewhere tropical where he could go in the bay or ocean every day.  We are positive that is what knocked him out.  The water was choppy and he loved the little waves on the bay.  He started out sitting on my tube, but in the end, he was independently hanging on his own tube (okay, Dad's tube) splashing and kicking and screaming away.  Having a blast.  He didn't want to go in his tube - has his own giant one with a mesh bottom instead of a hole (the kind that a boat can tow).  Last year it was the only way we got him in the water.  He was either too scared to hang on or didn't have the capacity to hold on or float.  This year? OH NO!  Big boy tube.  James was even walking on the floor of

the ocean.  On his own.  We were bursting with pride (still are).  All the other "firsts" of the weekend paled in comparison.  He ate frozen pizza. James ONLY eats fresh and only from certain pizzerias.  He ate a different donut.  James ONLY eats glazed.  We had successfully introduced Wawa donuts (so we could go somewhere besides Dunkin Donuts).  He wanted to eat a "ring pop" lollipop.  Held it on his finger as we walked the neighborhood, licking it appropriately.  He is still choosing a different treat each time we take our daily walk, so much so that I am getting used to it!  I love it when he is not so rigid.  I know he can get this way, so we just have to bear with it and stand firm, slowly pushing him away from those obsessive/compulsive desires.  It is not easy.  But the end results are more than worth it!  I keep telling myself this about potty training.  We are nowhere currently and it is discouraging.  Although, this week at school, James his has wet his pull-up almost every other day.  A huge step forward that he can be relaxed enough to let himself pee somewhere other than at home! Unfortunately, yesterday, James broke his two-week-plus streak of good days at school.  I am hoping it was a blip (he did have to poop) and he'll be back on track today. Come on!  If the Yankees can climb back up to first place, why not our James who works harder than a lot of those guys! 

An Incredible Week!

James had a very good week.  Everywhere.  He worked in occupational therapy.  He aced his trials at school. He didn't have crying jags or melt-downs.  He tried new things: choose different activities on the playground, different "treats" at the corner deli (everyday), different directions on our daily walk.  Not only did James anticipate his bath, he would initiate it if Mom was too slow in getting it ready!  After a period of giving us grief at bed time, he is back to his standard where he simply lays down and goes to sleep when he is tired.  Of course, we guide him, letting him know when bed time is approaching, and one of us lays down with him BUT letting bed time be James "idea" works best.  We have found his ideal time is generally between 8:30 and 9pm. On the verbal front, James is chatting up a storm.  Sometimes I understand, sometimes not.  I swear he sings with me when he's in the bath.  If this is true, the poor kid inherited his mother's abilities and not those of his musical father!  We heard "Bob bob bob bob" from the other room and James emerged with a Bob the Builder tape.  He has also tried to say two children's names.  Pretty cool. We went to visit a family on Friday after school, an outdoor play-fest with pizza - and it was GREAT.  James behaved like a dream, played in the yard, ate nicely AND tried new candy.  Fruit roll-ups are now THE reward tool!

Longest Week

Wow wee!  What a VACATION! After a rough start (sick kid, Medicaid screw-ups, under-the-weather Dad), we had a great, weird, relaxing time. At first, our days were filled with visits and projects - two tons of sand, two tons of rocks, and a new trampoline for you-know-who - all helped along by Grandpa and our big huge nephew. You should have seen him unfold himself from the car, and he's the younger brother (this family is TALL).  We had a great visit from old friends who brought their little guy.  We were apprehensive: Would James ignore him? Be frightened

that he could speak?  Play with him? No worries.  James actually initiated play!  They went into the bay with tubes.  James held on!  It was simply a perfect day.  Then Grandma and Pa babysat overnight.  We had lunch, went "antiquing" (what a bust! all our old haunts are closing or given over to reproductions and crafts.  the economy is tanking big time), and we went on a little dinner cruise.  A reproduction river boat gives guided tours on the local river, turning around near our house where the river hits the bay.  A bit boring with crappy food and "event" wine (you know what I mean! you've had it!) BUT it made us sit and relax for over two hours.  I don't think we've sat still in years - unless we were driving somewhere and that doesn't count!  

For the rest of the week, we hung close to home, perfecting our little summer haven.  Pools on the front porch, awning down with lanterns on the table.  Back yard party tent set up with paths to the huge sand-filled play area, the grill, and the new trampoline (which James LOVES!  he even had to jump early Monday morning before we headed back to New York for school).  James was curious about the outdoor shower, wanting to go in to "play" (okay, he wanted to stim).  Figures, a pipe burst and it doesn't work!  We have been trying to get him in 

there for years!  So we're not done with our projects yet but we did a lot and it felt nice to enjoy our home. It's hard to get around when everyone descends on the shore.  It is great that James is enjoying being home.  The more activities available, he doesn't get easily bored and frustrated and want to GO as much. That said, James still wanted to go driving a few times. For some reason, he would go and get his yellow rain boots. There's my guys, above, on one of these runs.  Not only is James in his signature shorts and galoshes ensemble, he has a super short hair cut!  It took a few days, but David slowly chopped it all off.  Between the new 'do and another missing tooth - I know I am biased but - James is simply adorable!  And we got the tooth.  It fell out over night (hmm, James did wake up screaming that night, I wonder. . .) and David found it in the sheets.  How did he ever eat with that tiny thing??  

Anyway, enough said, we are back.  James' Medicaid is still unresolved, but now the proper paperwork has been submitted. We have to wait another week for a response (will it be okay or do we need an impartial hearing to have his case re-evaluated? Prayers please! that meeting is long, hellish, nerve-wracking AND in Manhattan).  David is still under-the-weather but undergoing testing to get to the root of the problem.  We are okay, back and ready for what the summer session will bring us!

Monkey Wrench

So it's the last three days of school, we are running around, buying presents for the teachers, preparing for our vacation, and cleaning the apartment for the time away.  Of course, Mr. Money Wrench comes down with a 104 degree fever at school on Monday!  Tried to get him back on Wednesday (the last day of school until July), but, that morning, at his Occupational Therapy session, James climbed into the trampoline, and laid down.  When his therapist went in to see what was up, he crawled into her arms and sobbed.  He even pressed her hand to his left ear.  GREAT!  Canceled school but dropped off the gifts for the teachers and therapists (special ed means ten people who deserve way more than we can give) and squishy balls for James' classmates.  Then we had an hour to kill before the doctor.  We came home and took our daily walk around the neighborhood.  When I saw the time flying by, I had to vary the walk a bit and was afraid James would flip at the changed routine.  Although he did protest, it was handle-abe (is that a word?).  Good news at the doctor: not only was James an angel behavior-wise, he had no ear or strep infections.  His doctor recommended laying low for a few days and starting therapy again when I thought he could handle it.  I canceled this morning's session but, OH! He could definitely have handled it!  You better believe we went to speech this afternoon.

Life with James requires constant juggling - and this week really hammered that point home. Abort all plans and regroup.  No school. No cleaning. Just James.  Did I mention that yesterday James' Medicare was incorrectly canceled? Now David's schedule is screwed.  Instead of tidying up loose ends at work before vacation, he is running around and doing all the paper AND leg work to get James' Medicare reinstated.  

Only one more day (two for poor David at work) then TO THE BEACH!  See you in July . . .

I Love My Dad

Adoration.  That's the look James is giving his Dad in this photo. It's been one of those weeks: Daddy, Daddy, Daddy! And I am so jealous.  I know it's almost Father's Day, I can't help it. How pathetic can a girl get? 

On the home front, we've had a rather calm week.  So far good at school and therapy, too.  James is still very stimmy but he has been distract-able.  I can redirect him, get his attention AND hold it.  It has been tough as of late, so I appreciate the "lull." James has also been rather "chatty."  Most of the time, we hear nonsense sounds and squeals.  Regardless, we encourage him and, as a result, I believe he is producing more approximations.  At a friend's house, he said something like "potty" but I didn't understand until he got a pull-up out of my bag.  Another time he said "pee-pah." So I asked if he had "pee-peed?"  He smiled at me (rather sweetly, patiently) and repeated "pee-pah" and made an eating sound with his mouth. Oh!! PIZZA.  You better believe he got pizza that night.  We actually sat down as a family and ate some pizza.  Even Dad, with his cholesterol woes, "cheated" and had a slice.  I guess you could say James rates pretty high in his Dad's eyes. What a pair, my guys!  

This week saw Annual Awards Day at school.  James was recognized for his advancements in Socialization (through his friendship with one of his adorable classmates).  Great, that was yesterday and I'm crying now!  It is truly amazing that James seeks out this child.  I have yet to get a picture of their goodbye kiss.  When I am ready, no kiss!  Of course this closeness has a downside because they set each other off. When one gets upset, there goes the other!  Oh those lucky teachers.

One week to go before "vacation" (a week off) and I can't wait! David took off from work as well and I am over the moon with anticipation of no school or therapy for a whole week.  New problem: How can I stop my husband from filling every day with projects?  A little wiggle room for fun is all I ask!!  Wish me luck.

Space Boy

Our gorgeous James has been super spacey and stimmy this week.  I haven't seen him this wacky in years and I can't help but find it worrisome. He always stims at some point, usually when he is tired or alone in his room. Lately, he even tries to stim in the middle of an activity.  One minute, James is focused and we are doing puzzles. The next, he is throwing the puzzle pieces around, giggling hysterically.  I stop him by removing the pieces and asking him to sit nicely. Then I hand the pieces to him one by one.  Usually this works and we are back to the puzzle  But, a few times, James has tried to stim with the puzzle board, flipping it around.  I make him finish the puzzle and we stop.  He has also thrown little slappy/kicky tantrums (is it called a tantrum when accompanied by shrieks and happy screams?) in his sensory gym.  Once at the end and once at the start.  I have gotten him "back" but it is not easy or quick.  It's frightening.  And no, I do not scream or yell, or react in some way he might find rewarding.  What is this?  Another messed up autistic thing that we have to learn to live and deal with?  Is it because his OT had to leave the country suddenly (her father passed away)?  

On the less upsetting front, I think we have made major headway on curbing James' obsessive behavior regarding shutting doors and lights.  The word "NO" has worked (said it repeatedly, for weeks).  It has worked so well, that now, all I have to say is "Daddy says the doors must be open!"  Of course, we make him reopen the doors and put the lights back on, too. Unfortunately, sometimes you have to hammer a point home with our poor sweetie.

Another plus is that James has been approved for a speech device.  I'll learn the proper language by next week!  Of course, being the Board Of Education, you do not get what you or your therapist think you need.  They evaluated him on three devices, one of which is no longer available.  They also used icons that are not used in NYC education and ones that he was unfamiliar with.  They went with what James teacher said over what we or his speech therapist thought.  They said that James' progress in school was to be held in higher regard than at home or in a one-on-one situation.  Fine.  So James was approved for an 8-icon device (as opposed to the 32 icon board he has been training on for 6 months).  The device will have 12 programable boards, so we custom make ones for OT, Speech, School, the beach and Brooklyn.  And they are easily reprogramable so we can make one for visits to relatives or special trips.  That said, this department goes on vacation at the end of the month until September.  Great.  We waited for this evaluation for six months.  Is this process going to take a year?  Meanwhile, Dad is going to troll Ebay and see if he can find something to get him started.

Motor Skills

Finally: it's warm out!  Why does James grow in leaps and bounds during the summer?  And this year it is happening even before it starts!  James is actually wearing some size 7 pants.  Wild.  For the past few years, he has been jumping a size at the end of the season.  We are in trouble (actually in quite a few more ways than one). 

This week, James has been testing me left and right. So, in response, his Dad and I are standing extraordinarily firm.  The lights will remain on. The doors, open.  We do not play with food.  No eating or drinking in your room.  And, when you make a mess, YOU have to clean it up.  Also, when I have to leave him alone (that damn bathroom always calls me away), I give him something to do.  If unattended, even momentarily, James has poured juice all over his bed, broken all his snacks all over the couch or living room floor.  It involves stimming, I know.  I also think my poor sweetie just doesn't know what to do on his own. Thank God he wants to do something besides watch TV, but I have to be there to gently guide him, provide a little direction, otherwise it's time to stim!  Books seem to bore him lately so puzzles are still the distraction of choice.  For fun, we have also been identifying pictures.  From his Early Intervention days, we have these great Language Builder cards that use actual photos of real every day objects, shapes and colors.  James often brings me the box and we go through a bunch of images.  I show him two photos and ask him to show me the bird or the shirt or pink or whatever.  He amazes me.  How does he know what a rhinoceros or a watermelon is?  I love that he knows a skirt from pants.  He soaks up so much.  When his Occupational Therapist said that James doesn't know the difference between shirt and pants, I knew that not to be true and for her to look at the problem as a motor planning issue.  She did, she agrees with me now and is approaching it differently. Speaking of motor skills, I see improvement!  Besides his new ability to manipulate puzzle pieces, I see James lifting, pushing and pulling on his own.  He puts quarters in the parking meter.  He opens heavy doors.  He throws huge balls (and freaks his Dad out).  Although it might not sound like much, I have been trying to get James to complete these simple tasks for years.  And you know what? It feels pretty great.  Not only can James DO these things, but he WANTS to.

  

My Puzzler

My little man officially loves puzzles.  Three weeks ago, he pulled out some puzzles and began doing them quickly and expertly, like six-year old doing baby puzzles (which he is and they are).  I've slowly thrown more complicated ones into the mix.  They hardly presented a challenge. This week, I added puzzles where the picture underneath doesn't match exactly or where there is no image at all.  James has complained a bit with these, but I am confident he'll get it right.  Of course, he likes the bag I put them in a bit too much and they HAVE to be stored there.  I am not going to fight this little obsession as it makes it easier to cart the lot, back and forth to the shore.    
This week we are attending a big gala, THE fund-raising event for his school (a great excuse for an evening out for us).  Not only do we really gussy up but the event is held at a catering hall where the food is actually good.  And it is always a blast to see the teachers, in their finery, boogying!  Grandma and Grandpa are babysitting here too.  I am extra grateful, because, this way we don't have to cancel James' therapy.  Thursdays and Fridays are speech and OT days and I hate for him to miss those sessions. 

Time to run around and get the homestead in shape before I go get James (and he undoes all my tidying in minutes)!

Climbing Back Up

It's been a long week, trying to get James back into the swing of school and therapy. At the same time he misses and craves routine, he loves the freedom and doesn't want to go back! Add allergies to the mix and it's been a trying week (but far from the worst). Finally, it's Friday, he's back and we have a long weekend! But of course!

This week has been about balls and puzzles and Star Wars (actually the recap at the start of Episode II: Attack of the Clones, only available on video; Yes we are raising a geek). We are still taking long walks around the neighborhood, too.  I find it great that he occasionally breaks his normal route.  We don't always have to stop  at the pizzeria or can turn down a different street.  I was worried that his walks were getting too ridged.  One of the newest stops is the school on the corner, where he watches the children. He motions that he wants to go in and play with them.  I need to get my sweetheart into a recreation program.  So far I have only found ones that are geared for working parents, either: five days a week for hours or Saturdays and Sundays.  James has OT and Speech during the week.  And Sunday is Dad's only day off  and the only day we can see relatives or just relax, as a family.  I guess we are lucky that James is aware that Dad is home and he knows it's special.  If he didn't, maybe it would be easy to cart him off somewhere.  One of the Dads at school mentioned that his son is in a special needs soccer program.  I never thought this little guy could follow directions (and neither did his surprised Dad).  I am just worried James would only want to play with the ball.  Then again, we've got to try SOMETHING.  I want him to get better following instructions and waiting his turn.  Most of all, this kid wants to play with other kids!

Fastest Week Ever

James is so happy to be back splashing in the water.  We spent hours at our bay beach. The bulk head is a mess so the water comes right on the beach - and we love it!  Back at the house, James actually pedaled around on his tricycle/tractor!  I kept my hand loosely on his neck (he kept stopping when I let go), but he was independently moving the bike!  YAHOO!  Previously, James has pedaled, but nothing lasting or consistent.  A great step.  I hope it happens again. 

We started our hectic week with a Mother's Day gathering at Grandma and Grandpa's house.  While it's fun and a little rare to get everyone together, these events throw James for a loop.  It is impossible to get him back on track by the very next day.  As soon as we dropped James at school, we find out that the new siding and windows for the beach house  are scheduled to be installed mid-week!  So we ran back and forth, messing up James' schedule a bit more.  Thank God Grandpa is supervising for us now.  

Tuesday was the school trip to the Staten Island Children's Museum.  While James loved the bus ride, the museum was not for him.  I was a bit apprehensive when I learned the outside exhibits were closed, but I knew we were doomed when I saw the floor plan.  The entrance and the stairwell are both at the center of the building, requiring the kids had to cross back and forth in front of the doors.  For James, it was insane.  We were in one exhibit, a play area built like a ship with ship like activities and areas.  After protesting for 90% of the time, he was finally enjoying himself when it was time to move on to the next exhibit, upstairs.  Great, back to the main entrance. James either thought he was leaving or remembered he wanted to go.  That was it.  He spent the entire time in the pet and the insect exhibits looking for an exit and checking out the windows.  When we were finally moving, they take us across the damn entry hall again.  It took about 18 of the 20 minutes there to get him acclimated.  I think he only liked the final few moments because he got to sit in the cab of a fire truck. Maybe he thought it could take him OUT OF THERE. 

At home, James continued being out of sorts and super "stimmy."  He didn't know what he wanted to do.  He required a lot of direction or else he would stim 24/7.  It was so sad as I had become accustomed to letting him take the lead with activities.   He wasn't eating well.  He was having bad days at school.  He even ripped up some flowers and threw around the dirt.  Last night, we walked around the neighborhood and looked at ALL the flowers.  Reiterating that we LOOK at flowers, we SMELL flowers, but we do NOT rip up flowers.  Who knows what took.  I was just happy that he was interested in doing something different.  I have been slowly trying to break him of his deli - playground - pizzeria routine.  

Although yesterday evening was better, James' night was rough: a fitful sleep with lots of wakes.  He awoke with a low fever and a raspy cough.  Poor kid.  He was probably fighting this for days. Why do I chalk up everything up to autism?  Probably because I had a rough week myself, not only because of James and the house repairs but because, in a parking lot, a gal drove into the open door of our parked car rendering it un-drivable.  I was so concerned about getting it reported, towed and renting a replacement, that I assumed all James' antics were simply a set-back.  Uh-oh, he's awake!  I am so happy to hear him cough, it's not that deep, raspy kind anymore! 

Mother's Day!

James wouldn't let me get a good shot of the "hole" but here he is pointing to the missing tooth.  Poor kid gets his picture taken all the time.  Well, I guess he is a celebrity around here (sometimes a rather infamous one).  While school has been going smoothly - James is eating and behaving beautifully - he has been fairly non-verbal and a little clingy, even in outside therapies.  Although we are a bit worried, we are trying to keep in mind the distraction of tooth loss.  There is definitely another one going too. 

While we think he's a bit quiet, James has been using his communication board successfully.  Although a positive thing, it is frustrating too as that "communication" only goes so far.  We need a whole slew of boards.  One for Brooklyn.  One for Toms River.  I have to get my act together and just make them, right or wrong, using the "correct" symbols or not, who cares!  The therapists never have to see it or use it.  I have to get through to this kid and why not use his strengths which include visual identification and and generalization!  Sometimes I need a little extra help.  For instance, on Wednesday, James did not want to get out of the car.  Something about Daddy.  I couldn't get through to him so I distracted him with a lollipop, a walk to the park, AND a trip to the pizza parlor.  Hours later, as soon as we got to the house, and even though it was at his initiative, James got upset again.

I don't think I can stop his episodes, I want to ease his frustration.  He can be upset because I said "No."  I just don't want him to be inconsolable because he doesn't understand, or worse, because he thinks I don't understand.  I'm Mom!  James seems to think that I will always understand.  I promise to try my best James!  I know he appreciates my efforts too.  He may not be able to say "Happy Mother's Day" to me, but I know he loves me.  I am his.  Why else would he pat his chest and say "Muh" when he refers to me?  Funny, but I don't have any pictures of James and I on any Mother's Day, so here's just a happy portrait of the two of us at one of Daddy's exhibition opening parties!  

A Baby No More

My camera broke!  James is missing a tooth, I have no picture, and the new one is coming in already. Unfortunately, we think he ate it.  He had the tooth before lunch, but it was gone immediately after.  We asked him but his only communication was to point to the bottom of his mouth.  Oh well.  Lucky Grandma (moonlighting as the tooth fairy) isn't a stickler for physical evidence.

James has been fairly un-vocal lately and we are terrified his speech will stop again.  I do get some words occasionally so all is not lost.  His speech teacher also, very practically, pointed out that James just lost a tooth and that having a loose tooth and then a gaping hole in one's mouth is a HUGE distraction, especially for an autistic kid who battles distractions at every turn.  Did I say she was James' therapist?  I never hear how important therapists are to parents.  Not just for the service they provide for the kids but for the peace of mind they give us.  In a way, I consider them MY therapists as well.

That said, hopefully there is reality in his speech teacher's wise words and James' vocals will re-emerge.  Last night, he wanted to read a book.  "Ree Buh" he said.  So I asked him something new: What book do you want to read?  And he responded, "Bra Beh."  Wow, I thought, that really sounds like "Brown Bear" but I held my tongue to wait and see.  Lo and behold, James brought me that very book!  James' receptive language is huge and I have to remind myself to say new things and ask different questions even if I get discouraged when he can't or won't respond.  He is a real person, a big boy and not a baby, and I have to treat him accordingly, respectfully.  Perhaps he won't respond if he thinks it is not expected?

Back to the Grind

I didn't want to go back (I actually cried the night before)!  James didn't want to go back either and it was tough at times.  But you know what? He is so much the better for returning to his routine.  

Big Events this week (good and bad):

- James is eating his lunch at school, without Mom, without snacks, and yesterday, even without his books. 

- James enjoyed a school trip! Usually he loves to ride in the bus then hates everything else, especially the "hurry up and wait" aspect of the trips.  Patience is always required and there are a lot of new and unknown things happening.  Two tough issues for James.  This time we went to the Brooklyn Botanical Gardens.  Not only did James love to walk around and look but it was soggy and damp and he could splash at times.  Outdoors, waiting wasn't as hard for him.  

- James ate a sandwich.  BY HIMSELF.  At first it was encouraged but he was soon picking it up and eating on his own.  Wow wee! It was breakfast: egg and sausage and whole wheat bread.  And he loved it.  What a breakthrough.  Hope it sticks.

- James is "talking" again.  Not at his old levels but Thank God he is trying again.  Why did he stop?  Was I too quiet?

- James is holding "it" again.  Back to the old routine already.  I have no idea how to break this.  He obviously has to go to the bathroom at school - but won't - so he holds it and eventually constipates himself.  Got to step up the prayers on this one as nothing physical is working and this kid needs help.  Is there a patron saint of potty training?

One more thing!  James is losing his first two teeth!  You will see a gap tooth kid next week.

Gorgeous Head

A bizarre term of endearment from his mother.  I have no idea why or when I started to call him this.  Poor kid responds too.  He knows he's gorgeous.  This week is our Spring Break, so of course, we head to the beach and it's cold and rainy.  No matter, we are there.  James is in love with the ocean.  He likes the bay too, but the tide and the crashing surf, blow his mind.  So far, we have seen good and bad developments.  The constipation thing is not as bad and suppositories are not needed BUT he is still far from regular. It's funny, although "things" are not happening on a daily basis (yet) there are no nightmares or middle of the night screams. Perhaps we misread and the screaming episodes are school related?  He also has no trouble going to bed and has been out by roughly 8:30 every night.  Is it connected?  No nightmares and James WANTS to go to sleep?   His speech had slipped some too.  It was sad.  He wasn't even trying and we were hearing only Bs and Ps. But this morning, after we dropped Dad at the bus stop, James started trying again.  On his own.  Wanted spray candy, handed it to me "PAY!" and then later "MAW PAY." Then "BamBA" for Grandpa.  Perhaps his speech was on holiday too?  I have to hound him but not today.  James is with Grandma and Pa for the evening (God Bless Them) and Mom and Dad are going on a date!  

Glass Half Full

Awareness: it's a double edged sword.  We prayed for it, couldn't wait for it, but we are in no way ready for it.  So, this week James has proven again and again that he is more aware than ever.  

He realizes that he must respond when spoken to.  His words are more like noises but often they are correctly two-syllables or start with a B or P.  Even the owner of the corner deli knows what a "bollibop" is (Thank you W. and family for your patience).  

The negative?  James is aware of his bodily functions and holding EVERYTHING, causing constipation and middle of the night screaming fits.  James wants to play with other kids in the park, throwing his ball at them, but cries when they avoid him or run away.  Sometimes a nice boy (always boys) throws the ball back, but the tears flow as the child trots back to his friends.  Luckily, the God-send of the big boy downstairs is patient and loving to James and lets him "play" basketball with him.  James is his biggest fan when he and his sweet girlfriend play (okay she's just a girl who is his friend but she's super cute so he'd better be nice). 

Melt-downs are frequent, too.  On Thursday, James had a substitute OT (Occupational Therapist) and I prepared him on the drive.  He was great, gave her his hand as soon as she introduced herself.  I did NOT tell him he was staying an extra half hour.  When the hour drew to a close, James made it very clear that it was time for socks and shoes.  He kept pointing to his communication board: CLOSE.  To hammer home the point he showed his OT - eat, jump, close (over and over) - as if to say this is what I do here and we are so DONE.  So we left.  Of course after explaining that there was no school today (and we usually go to school after OT), I went the wrong way down the street TOWARD school, out of habit.  James immediately yelled at me to let me know.  

The other "problem" (and I WANT THIS PROBLEM) is that James wants interaction 24/7.  We read, play lots of different games with balls (especially catch), play with a "parachute," listen to music, we even "color" AND cut with a SCISSOR (New skill alert there).  That means mom often uses the bathroom with someone sitting on her lap or yelling at her to hurry (never very conducive to the task at hand).  As I write, I am being yelled with a very clear "bye-bye" at the laptop.

Out like a Lamb??

James attended his first successful children's birthday party.  By successful, I mean: no tantrums, sitting nicely at the table, actually eating with the other kids, and running around with them.  It was at school, and, as we have been working on eating at school, it was a complete surprise when James started eating pizza and drinking Hi-C on his own initiative.  His teachers were amazed and took pictures!  They didn't know James could drink from a cup, without spilling, and with one hand!  Then he ate one and a half slices.  James even tolerated the guitar player for a good long while.  At home, James freaks out and holds his hands over the strings when Dad plays the guitar.  And won't calm until the guitar is back in the case or on the wall.  Eventually James wanted the player to stop (same behavior as at home).  Luckily, it was almost time to end anyway, so nothing escalated.  His ever-positive main teacher was happy to see James forceful about something, really communicating his point.  God bless her!  

Another good note is that James has been slowly trying to engage the other kids on the playground and yesterday (after a horrendous morning), he actually threw the ball at two of his classmates, several times, trying to get them to play catch!  He had to settle for one of the adults as those kids weren't interested, but, regardless MY KID RULES.  

Now the down side:  James has been screaming again at night. The reason his AM was so bad yesterday was that he had only three hours sleep.  Last night was better - he was only up for and hour and a half - but the screaming was worse.  We calmed him fairly quickly, thank God, by quietly reading books, covered up in bed.  After about 15 to 20 minutes, he agreed to try and go to sleep again.  He was up for almost and hour more, but laid quietly and happily in the dark with his Daddy.  We have no confirmation of what is causing this but after wracking my brain, I can only guess that it is constipation causing nightmares.  He did poop yesterday but after that intake of cheese pizza, perhaps it wasn't enough?  No matter, books work wonders: they calm and focus him at school during lunch AND they calm him in the middle of the night!  I guess you could say the this website fully endorses READING TO YOUR KID.  Let's hope tonight (and the rest of our life for that matter) goes even better.

More Downs Than Ups

Our James was up for five and a half hours last night.   Screaming.  It is hard to think anything but that life really sucks.  

This week, James had been on a successful roll.  He had been eating lunch with his class all week (with my help).  Today he sobbed throughout lunch, eating and drinking nothing.  Although his school days have had more ups than downs, this morning was full of inconsolable tears.  The weather had been gorgeous and we were at the park every day, having fun.  Today it is chilly and rainy.  Today should be Friday the 13th.   

Starting the night of February 26th (Dad's birthday where we stupidly drank two bottles of champagne), James began waking up, screaming, every night.  I mean blood curdling - call the police - screaming in the middle of the night.  For hours.  It wasn't night terrors.  He was awake and nothing soothed him.  It wasn't dietary changes or constipation.  He wasn't sick but did something hurt?  Nightmares? Who the hell knows.  We just muddled through.  When it abruptly stopped last Friday, we convinced ourselves it was a phase.  The rationalization that the human mind is capable of, is amazing.  Although, on our part, I think it is self-preservation.  I can't even comprehend that this is our life, for the rest of our life.  And when we die, our kid is will scream and yell and self-stimulate to his hearts content and disappear into his autistic world.  Just another sub-human retard for some self-obsessed and bored aide to drag around and leave on a bus.  Just another guinnea pig to try the latest untested research/drug on.  James is a smart, gorgeous, caring, little boy who loves to play and have fun.  I don't know why or what stops him.  We have to try harder to pull him out, so he can be independent, before we aren't around to communicate to the world for him anymore.  Before he isn't a cute little boy with energetic young therapists and teachers who really want to and believe they can help him.    I know, I know, count my blessings.  I just have to stop being short and sniping at my blessings first.

Workaholic

We try to give James a lot of freedom and leeway, help him develop a sense of choice, of independence, of boundaries AND (hopefully) the responsibilities that go with them.  For instance, I let James run down the street.  This small task has taken years.  Making him understand the world around him: that he has to stop and wait if he gets too far; that he must stay out from the roadway; that he can't run into people.  It doesn't always work, he doesn't always remember, but that's why Mom is there, to bring up these little life rules, over and over again.  BUT we draw the line when James decides to give up eating and drinking at school!

This week I have been to school everyday for lunch.  I am in the lunchroom when his class arrives and James sits next to me.  At first I brought everything under the sun to see what worked: real food, junk food, candy, books.  Day one, he drank all this juice/seltzer water mix (his current fave).  James almost ate a mini oreo cookie but another little boy lunged to grab it, setting off tears which ended the eating.  Day two, I could hear James yelling and protesting before he even entered the cafeteria.  I was happily surprised when he sat down nicely and reached for his juice. Unfortunately, his agitation resurfaced as a boy dove for his books.  I asked if we could move.  SUCCESS. After calming him by reading, I slowly handed him a cookie and another, until he was reaching for them himself.  I tried a chicken nugget AND HE ATE IT in three bites.  Day three, I heard him again but with less volume.  We sat slightly separated from the class, and no time was needed to calm him down.  James simply opened a book and started drinking his juice.  He ate some mini donuts and a chicken nugget and drank all his juice!! While the lunch is not ideal, I am luring him in, and it's working! Today, Friday, James drank all his juice and ate THREE chicken nuggets, some mini-oreos and mini donuts.  THANK GOD.   

Poor kid, I have even more in store for him next week.  Monday we start eating with the rest of the class.  When that is a success (and I know it will be eventually), we start on different foods!!  Poor teachers.  They let me in and now I'm never completely leaving.