Two Days and Counting. . .

No I don't mean two days until James has a new cousin (or maybe I do??) I mean until Christmas!!  I am not sure if - or how much - he understands, but James has been happy and silly for the past three days.  I know he picks up on emotions (even if we "grownups" think they are concealed), so how could he NOT be excited? It's in the air!  Not to mention the very pretty, very seasonal snow.  It's actually frozen ice. And thank God, as snow is usually black and dirty if it is on the ground for more than a day or so.  

So Happy Christmas (and Hannukah, and Kwanza, and New Year, too!) Tomorrow morning, we are running away (after one more OT session) to begin a much deserved vacation where there are no schedules or appointments (except that one at Grandma and Grandpas that involves too much food, drink, presents and silliness). Even an autistic kid needs a vacation (well, almost. There are still potties and eating utensils and communication books on holiday). Poor James!  And wish us luck too . . .

James is SIX

I can't believe it: James is 6 years old!  Our BIG boy.  He has come so far and works so hard, but he's still a little toddler.  We are so lucky to get the kisses and hugs and love, but at the same time we want more!!  We want the brat, the sass, the independence.  Mom and Dad met the day with a bit of melancholy mixed in with the the joy and pride. Regardless of an occasionally teary parent, James had a great day.  I am not sure he understood exactly, but he did know he was getting extra attention.  At his morning OT session, they sang Happy Birthday and when another little boy hugged him - James let him!  James doesn't mind adults touching him and he enjoys watching other children but letting himself be hugged? WOW-wee.  The boys played together for the rest of the session (meaning they were jointly guided through activities by their therapists).  Just an amazing start for the day.  School went well too!  I brought in donuts for the kids and James actually ate (he eats inconsistently at school).  After Daddy came home, we opened presents.  James only cared about all the balls he got from us and his Aunt & Uncle. How normal is that? "Ick! Clothes!" He acted the same way with his Grandparent's presents over the weekend.  Our "cake" was a glazed donut with candles.  It was a hit and James ran around in a major sugar rush daze before passing out cold at 9:15.  Next stop: CHIRSTMAS!!

5 Days and counting...

It's almost party time!  Five days until James' turns SIX, then another 9 and it's Christmas. Not to mention that James' new cousin is due to arrive anytime before, after or in between! Let's hope sooner than later so the new mom can toast in the New Year!  Regardless of when the new birthday party will occur, this month is one long celebration.  Speaking of which, I must go work on the cards, the tree, and the house! 

This week, James has made it obvious that he knows what a circle is and he knows how to make one.  During homework, he was supposed to match and circle two identical objects. Since that wasn't working, I approached the task differently.  I asked him to point to the square, the triangle, etc.  Then I told him he had to circle the square.  It was so cool to see, in the air, directly over the square, he "drew" a circle around the image with his finger.  Of course, I praised him, and then told him to draw a circle WITH THE MARKER.  He wasn't pleased with me but he did it. His written circles are not pretty, but he can do it!! I have waited YEARS for a breakthrough with writing/drawing.  I cannot express how amazing it is to see progress after years of seemingly fruitless and thankless repetition.  He knew what to do, just for some reason he could not.  Poor kid.  Now I am never going to let up on him!  He is going to be writing and using that potty in no time.

Another Woman!

I was sick, passed it to James, and we gave it to Dad.  In school, out of school, part-days.  No heat for two days, walking around in 50 layers. James HATED it when I blew my nose, actually yelling at me.  What a ROUGH week.  Not to mention the gallery had an opening this week so Dad was super busy and could not stay home and rest.  

Good news is that today is Friday.  The opening was a success. The heat is back on.  And, most importantly, James is at school, after a SUPER OT session.  He fell in love with the daughter of one of his sensory gym's staff.  Her school was closed for a teacher's conference so she and her sister were helping mom.  James took one look at her and turned to me and waved.  I asked "Do you want me to go?" as I usually stay and learn and participate as much as I can.  He said "Yeah!" HE DUMPED ME FOR ANOTHER WOMAN!  I am so happy I am tearing up now.  He was smitten by a beautiful, 7 year old, blonde Polish girl.  He is going to be fine, he will participate in the this world! Another great "normal" thing.  He "played" me yesterday.  He had a rough morning at school.  Coughing and crying, making his nose run.  His teacher called me and I went and picked him up.  As soon as we got outside, James started laughing.  I asked him what was so funny and he said, clearly: "Movie!"  "Oh," I said, "Are we going home to watch a movie?"  He nodded and said "Yeah."  He was so NOT SICK that we went to Speech later in the afternoon.  Once again, this week with James was good, bad, exhausting and exhilarating. How the heck am I going to kick my cold???? 

Happy Thanksgiving!

One more day to go. I am so looking forward to Thanks giving and the little vacation that goes along with it! James' school has its annual Thanksgiving pageant and feast tomorrow. It's the first year in the big auditorium.  At first James was the only kid in his class who liked the space.  I hope that changed. Sometimes autistic kids get overwhelmed by spaces, too big, too small, too noisy, too bright.  I hope it goes well. Either way, I have my camera ready! Then we hightail it over the Verrazano and head to the beach to start cooking!  Our shindig starts around noon, with most of the gang coming for appetizers but only about 6 for dinner (who knows how long James can sit). Regardless, it's wonderful that we can stay in one spot all day, especially where James so comfortable. Yet another little thing to be thankful for, part of a VERY long list this year. 

Thank you God. Thank you for our sweet beautiful James.

Sick Kid!

Well I missed my first week!  James was sick sick SICK with a stomach bug and was out for most of the week. Poor kid, it was not pleasant. Funny, I can't get him to pee in the toilet but I got him to puke there!  I guess if he peed as frequently as he was vomiting last Tuesday, he might understand better.  Thank God this week is proceeding more normally.

That said, life is far from "normal," of course.  James is having great school days (yes, I said great) and manic evenings (with flashes of brilliance).  I know, what the heck does that mean?  For instance, last night, he was so focused on self-stimulation (aka stimming) that I had be with him every second.  Hold the YOU SHOULD BEs for a second.  I mean I had to be interacting with him, every second: no bathroom (for me), no answering the phone, no walking over to the other side of the room and blowing your nose. Other moms will nod their head and know that I am lucky. Some kids are violent or self-injurious and this type of evening is the norm.  Forget redirection, nothing focused him, it was constant.  I slept without moving last night! Well, except for when James climbed in the bed.

Now for some examples of the "great/brilliant" part: James is doing great in school.  No whining.  Decent eating.  Amazing transitioning to the auditorium and the lunchroom (only child in his class who could, actually).  Great reciprocal language and actually anticipating the next activity.  At home, while James was in the tub, I was blowing bubbles in the bath and trying to get James to blow (he has attempted a flute with his speech therapists and had a little success lately YEA!).  James looks at me and smiles, puts him mouth the the wand, and SAYS "blow" beautifully and clearly.  Moments later it was happy squealing and the word "bubbles" escaped from his beaming face.  

Update on the test front, every genetic test - and there were a lot, specific (like Fragile-X) and general chromosomal ones - came back NORMAL!  How cool is that?  One less unknown.  I know, now what do we do with this information?   And he's got all the MMR antibodies in his bloodstream.  Of course now the Board of Ed wants a copy of the actual blood test as a doctor's note is insufficient.  How can the BOE trump a medical doctor? I think this is a legal point here, but I think I'll eventually get it for them.  I just want to talk to my doctor first.  

Also, we are starting James on a communication book with PECS symbols as a stepping stone to a talking board.  It's so new I don't know all the terms yet.  BUT so far so good, James has the "more" and "finished" symbols down pat.  He's not interested using the symbols of ideas that he can express physically.  Like "eat" or "drink."  He'll go and get the bag of pretzels or the juice.  It a good sign though, he gets the concept.

A New Hope

Barack Obama, our new president! Not that James could vote but there was no question of his pick.  Before I knew much about Obama, James' Dad brought something interesting to my attention.  This senator was obviously influenced by his kids, choosing a Bob the Builder catch phrase as one of his slogans:  YES WE CAN!  Was it a coincidence?  Maybe he didn't even realize it at first (this kid stuff really seeps into your brain).  Heck, we can't be the only household whose vocabulary is littered with words and phrases from children's videos!   I mean even the title of this post is a Star Wars reference!  Anyway, enough silly crap.  On this exciting and frankly weird feeling day, I hope and pray Obama will continue his interest in and assistance of the underprivileged.  If this man can inspire 14 million more people to vote in this election than last, I have great hope that he can continue his influence for sweeping change.  If the majority of America can get over their crap and vote an African-American man into presidency, maybe they can be more open and less petty, more involved and less self-absorbed.  Judging by the number of drivers who cut me off this morning, I'm not so sure, but a girl can dream! And as our nation enters this new era, I also hope and pray that James can step up to the plate and turn over a new leaf.  Even though he cannot understand this monumental event, I'm going to hold this kid to the same level of high expectations with which I am holding the 44th president of the United States. 

Short and Sweet

It's amazing what some ribbon and cardboard can do for a sweatshirt and a pair of stretch pants.  Instant Wiggle!  There isn't a blonde Wiggle so we went with available sweatshirt colors.  Another thing: similar items in the boys department were more expensive!  Wild.  I always thought we gals paid more for everything.  

Dad wanted to see James in Sgt. Pepper garb.  I was afraid that all the fringes and medals and braid would be far too attractive for an autistic kid to handle. While those things don't seem to be a major distraction for James, can you imagine sending him to school in such an outfit? He would be the most popular kid in school!  Then again, why should things be any different at school then they are at home?

Day by Day

Too cute and very aware is my description of our guy this week. Unfortunately the second set of adjectives opens a new can of worms.  On Monday, he hit another boy in his class - of course the one who is a few heads taller than him.  We talked to him and stressed NO HITTING.  I went through a list of everyone in his class, adults and children: Did you hit. . .  He nodded yes for the same boy that his teacher told me he hit.  Oddly he also nodded yes for one of the assistant teachers.  I didn't know about that.  On Tuesday, I asked her if James hit her and she said YES (but sweetly made excuses for him, that it was out of frustration)!!  Can you believe it?  I almost burst into tears.  He COMMUNICATED TO ME, correctly. Amazingly, James listened to us and did not hit the next day.  Instead, when he was frustrated - he did not want to go to the potty - he chomped down on his arm rather than hit.  He did a good job too.  I have got to ease his frustration.  Get him to communicate instead of freaking out.  His teacher suggested flash cards that say NO HITTING or NO BITING and show a little kid sitting nicely.  I hope this is a suggestion that came from the top of her head.  This is what is supposed to help my child cope, ease his mind, in the middle of a meltdown?  Don't hit or bite or some way get instant attention, sit nicely?  "Normal" adults participate in a variety of activities to ease stress and frustration.  And a kid, who is dealing with a lot of messed up issues, is just supposed to switch it off? I was so dumbfounded that I just took James hand and left.  Lordy, we need a school meeting pronto.  Don't worry, it's in the works.

My Trooper, the Fork-Using Kid

Not much happening this week, but I guess no news is good news.  James is STILL using a fork, and now he is eating breakfast at home with his parents BEFORE going to OT (Occupational Therapy).  That way his therapists can concentrate on much more than using utensils.  If he slips, I'll just bring breakfast to his session. If he can't transition to a spoon or to other foods in time, then we'll bring those issues into therapy.

Biggest event of the week:  James had his appointment at the hospital to begin genetic testing.  Poor guy!  They took so much blood that he was giggly and acted drunk as a skunk for hours.  After a beyond rough experience with four of us holding him down to give blood, James shook it off and became happy as a clam on the walk to the car.  Then again, he was pretty loopy.  I think Dad was more traumatized and had a harder time recovering.  James was in such a good mood that we used the day off to visit James' aunt and uncle's adorable new home.   

I can't tell you how great it is to worry more about what James should be for Halloween than about tantrums and self-injurious behavior.  Okay, that's a lie, the concerns are Halloween AND potty-training.  We are still nowhere on that front.  But that's another story. . . 

Smartest, Hardest-Working Kid in the World

THANK GOD!  After months and months of modeling and hand-over-hand, James has decided that he understands how to use a fork, when to use it, and where to use it.  He still needs help piercing sometimes but he gets it.  He stopped protesting and started eating, at the table, in a timely manner. ALL AT ONCE. Of course this happens when his OT is on vacation.  She will faint when she returns (she has been waiting for a breakthrough)! For months I had been participating in his OT sessions, brushing, joint compression, lotion, oral motor exercises. All to get him ready to eat. And then transfer it home. We did this at OT and home for awhile: major fighting, major yelling and not much eating. Then all of a sudden, James got it. BUT he put it on on HIS terms: toothbrushes go in the bathroom (that's where oral motor happens now); brushing and joint compression and lotion happen during dressing; and eating is done at the table with mom and dad! We have been eating breakfast well for quite a few days, and we were very pleased and planned to slowly move on to dinner.  James - the smartest hardest working kid in the world - had other plans.  Last night, after he had already eaten - pizza - he sat down at the table with us.  We had to scramble and get some chicken.  He sat there and ate with a fork, the entire time, until we were all done (even though he was finished before us).  AMAZING. Beyond amazing.  I am tearing up even now!

New Season, New Month, Not-so-new Boy

Unfortunately, I saw some behavior this weekend that I haven't seen in years: a hardcore, full-on tantrum.  James was invited to a party for a 3-year old neighbor.  He didn't want to be there. He definitely didn't want to take off his shoes.  Luckily, I took him out when I saw it escalating (despite protests of well-meaning adults).  I can't imagine what would happen in a room of TALKING 3-year olds.  He can handle our little neighbor but he gets upset when children smaller than him can speak.  The experience was so horrendous for him that, once outside, he attempted to smash his head against the concrete steps.  Wow. I caught him in time.  I held him in a vise grip with one arm and picked him up by the back of his pants with the other.  What am I going to do when I can't physically stop him anymore? Scary.  I've got to figure out how to communicate with this kid. Meaningfully I mean, the gray areas, the whys and why nots. Basically, we understood each other perfectly on Saturday.  I wanted him to try the party.  He wanted to leave.  How do I make the breakthrough?

Anyway, that was it.  As if a switch was flicked, James was back to being a happy kid.  Since then there is one development worth watching.  James has sobbed a few times instead of attempting communication.  For instance, in the midst of playing ball, James started crying.  What he wanted was to go inside and watch a movie, but instead of showing me, he broke into flowing tears.  There were a few similar episodes.  I've gotta get to the bottom of this.  I believe that James knows he can't talk, but he has always tried to communicate with me in the past.  I can't let him stop trying!!

Another Week Down (almost)

Tough week.  I don't know why I feel this way as things were a bit uneventful, a bit even. Maybe too even. Guess my problem is that I want more, more, more!  James was on such a roll, chatting and exploring. And he still is!  Got to shake this mood off. 

James actually said 2 (twice) and 3 (once) when counting with dad.  At the count of three, Daddy would throw him on the couch!  Talk about motivation.  James was in a BIG hurry to get to 3!  

Of course I'm annoyed at the BOE for not returning my phone calls, especially because the cut-off date for questioning the IEP is Monday.  So, we're putting our question in writing and Dad just fed-exed the letter today. A stupid question - about a possible typo - requires a formal letter.  Ridiculous. 

Another downer: A first-grader we know from therapy was beat up on his SUPERVISED mini-bus yesterday. Probably read about this one in the paper tomorrow.  Enough! Promise not to write while blue in the future!

Time Flies By

September is already half over?!!!  After preparing for and attending meeting after meeting, this week flew.  We thought Friday's IEP meeting was a successful . . . until a copy came in the mail today. It differed, slightly, from the IEP that we discussed.  Of course, no one is available at the listed telephone number and there is a limited time to protest. James's outside OT provider said not to worry, that even if we couldn't get it fixed, it would be okay.  I am just worried about setting a precedent here. Annoying. Annoying. Annoying. On the positive side, a doctor at a prominent hospital agreed to check James for potential mitochondrial disorders!  At first he called to say that he saw James's records and he thinks a few simple tests at the pediatrician could rule everything out.  Then he asked why I was interested.  I told him and he listened.  When I got to my medical history, he changed his mind and booked an appointment for next month! 

So far, so good!

Hectic and nerve-wracking with never ending responsibilities! That is how I would sum-up getting back to school.  Although James had no desire to go at the beginning (see him hiding on the way to his first day of school?), he is a new man this week.  He floored me yesterday when, he sat down at his table and pointed to his homework notebook! James has liked school for a long time but WANTING to do homework? Who is this kid (and can we keep him)?  He also started his therapy schedule well.  This is the first time after a break that James did not go a few steps back.  Although I did see some backwards-sliding behavior at the end of vacation, he bounded forward again, seamlessly.  I got the RSAs fairly quickly and our doctor visit went well (James will be tested for mitrochondrial DNA disorders and given a Titers test, before more shots are given).  Next hurdle is the IEP meeting with the Board of Ed.  I hope all goes well and he can stay at his special school and remain in his current therapy session.  Prayers please!!

Its Over Already?

I don't know who hated starting school more, me or James.  Believe it or not, vacation went great. Of course there were tantrums and sleepless nights and periods that just sucked, but over all it was our first real vacation.  We visited old friends (gave my God daughter and her sister their CHRISTMAS presents), got to see relatives for more than an afternoon, and hosted or attended some barbecues! Our niece even WANTED to stay over night at the beach! James hated our bay beach but loved the ocean and would still be standing there in the surf, getting crashed by the waves, if we didn't coax him away. Did I mention we somehow did all this while keeping a low-cholesterol diet and eating by candlelight on the porch every night?  I guess it's not a good vacation if you are happy to go back home.  Still, sad as I am to see it go, I know it's time for James to get back into his routine of school and therapy.  He was getting cranky and resistant to change and simple commands.  He was "slipping" too, giving up using the fork (pushing it away, screaming at it) and an open cup (spilling it at EVERY sip).  Regardless, I know James needed the break too.  We'll get him "back" to where he was (and keep you posted every step of the way).  Next hellish event: New round of vaccination? Big talk with the doctor. And then, next week, the dreaded IEP meeting.

Vacation here we come

Going to the beach AND staying there until September.  YAHOO!!  Wish us luck. . . 

Field Day

It was Field Day at school yesterday with games and activities for all the children. The paint and water games went over big. My assignment - helping children make sun hats - was a bit of a bust as most needed hand-over-hand help and there wasn't enough time! Funny that one of the best decorators was a young, mostly non-verbal, gal who could glue and write, independently, skillfully and quickly! Very impressive! Six year-olds have been known to dawdle, normally developing or not. James was most interested in the "spray paint" using water bottles. Unfortunately, his class would have preferred to stay in their room. And they did just that instead of heading to the cafeteria for pizza. Too much stimulation I guess. Too bad, James loves pizza!

7 Days & Counting

A week and a half more days of school and therapy until break!  We - okay MOM - can't wait. James loves his schedule but everyone needs a break. A little fun in the sun is in order!