Many of Tony’s fans and family are probably wondering why his site hasn’t been updated in more than a week.

Well…

We’re going through a transition right now with Tony’s family of educators (ABA therapists), with his Tall Blonde Girl Whitney off to grad school on the beaches of Wilmington, NC, and Parker suddenly leaving us as well. We do have Danielle, who we hired a few short weeks ago…and she is doing amazingly well with Tony despite any real formal training in ABA or in dealing with Autistic children. She seems to have a natural ease about her, and Tony really likes her. There is a natural chemistry there that just works. I’m grateful for that.

Today is my 40th birthday…and that’s all I have to say about that. But I felt that it was a good time to update Tony’s site, share some of my own thoughts about the last few months, and look forward to the future.

Tony’s last few weeks have had their typical ups and downs. On the one hand, we’re down two trained therapists…but on the other hand, Tony has a new friend in Danielle and she is handling things on a level most trained therapists sometimes never manage. Marlaina and I felt this transition would take the last of our sanity from us…and it came close…but Tony has remarkably shown that on his own, he can find his own way. This isn’t to say that his talented entourage is no longer needed; rather, Tony has progressed so far, and in so many ways, that when left to his own devices he will sing songs, interact with us while we’re working, and appropriately play with his favorite toys. In a way, this transition has proven to us what we “think” we’ve seen…his development of typical patterns of behavior and interaction.

This isn’t to say that Tony is any less Autistic, per se, but he has shown in the last few weeks just how radical his changes have been. When he plays quietly by himself, these days, it isn’t obsessive stacking of blocks or lining up of objects (although he still occasionally does this with crayons) but more like creative play with his plastic people (there’s “a Mom” and “a Dad” and “a Sissy” and even “a Tony”) who he likes to have interact with each other in a bathtub.

Yeah…they apparently love being in a bathtub together! I like to think he’s really wishing for them to be in a SAILBOAT…but that’s just me. You all know how I feel about sailboats. Note to self: Stay on top of teaching Tony “Where’s our sailboat?”

His plastic family has conversations with each other…many times about crayons and Nightmare Before Xmas (his FAVORITE movie of all time) and even his latest favorite drink: pink water. It’s a vitamin water made by Glaceau (Hey, guys, sponsor us already!) and he absolutely craves the fortified liquid. Oh, on that note, Marlaina and I believe Tony has figured out that we’ve been spiking his drinks with other vitamins and nutrients (Omega 3/6 and such) and he’s sort of gone on strike with most of his sippie cups. He now prefers to drink out of his Wiggles cups (What, you don’t know who the Wiggles are???) and insists on watching us pour the water straight in from the bottle.

He’s too smart.

Thanks to his incredible speech pathologist Jill, his language skills are more expressive than ever. And now, when he wants something and doesn’t know the word for it, he actually points. This is a MAJOR milestone in his development! A few nights ago when I put him down for a nap, he requested “pik” over and over again. I didn’t know what “pik” meant…and so I asked him what “pik” was. He kept saying it over and over and over…and finally got so frustrated with me that he POINTED towards his bookcase and said “PIK!”

Dumb dad that I am, I didn’t realize that he was asking to “pick” one of his own videos, instead of me just calling out titles. He had been working on this with his therapists, and was pretty in control of knowing what HE wanted. BUT, better still, he POINTED AT SOMETHING he wanted. I was blown away by this revelation.

He has continued to point at some objects, in association with verbal commands…so this is a brave new world we’re entering.

Verbally, he continues to put words together and make small sentences. Tony also seems to be babbling incessantly these days…like he is struggling to make his mouth form the words he hears in his head. He still has miles to go…and yet he has come so far with communication. (Did I say THANKS JILL enough? I need to!)

Tony is affectionate in ways that we’ve read most Autistic children are not. He actually asks for, and receives (of course) hugs and kisses. And he does thrive on interaction with us. Sometimes that is hard to remember when I’m in the middle of a business call or Web site update or some other advertising-related aspect of our business. Life here is sort of ¼ ad agency, ¼ Tony’s Restaurant, ¼ Pre-School, and ¼ Zoo.

That’s Being Tony for you!

I look forward to the next 40 years of Being (with) Tony.

Anton – “a Dad!”

Today is Tuesday, March 14th…and my story begins…

So after watching a fascinating program on the History Channel about Comets last night (I didn’t realize it was a 2-hour show until I was already hooked), I trundled upstairs to bed at a very, very late hour. Walking up the stairs, I heard music coming from Tony’s room, and then realized he was awake and having a conversation with his musical (talking) frog. I listened at his door for a moment, and realized that he was fully awake. I decided to go in with a fresh cup of milk and change his diaper.

Tony was VERY talkative, and excited to see me (he said “hi dada” over and over until I picked him up) and so without any delay I settled him on the floor for a quick change. Afterwards, I laid him back down in his bed, and he immediately grabbed his turtle and said “ni-ni” and laid his turtle on its back and started making snoring sounds (for the turtle). He then said in his own distinctive way “wake up” and propped his turtle back up, and then started making him dance and jump, saying “jump, jump, jump!”

It was obvious that Tony wanted to discuss the finer points of his turtle’s active nightlife…at 2:30 in the morning.

So, we continued to pretend play. This is an extremely important development for Tony, since prior to his diagnosis, diet change, and therapy, he didn’t seem to have the ability (or desire) to pretend play with any object. In just a short 7 months we’ve seen Tony go from just obsessively fiddling with parts of toys (spinning wheels, lining up blocks, flipping pages back and forth without really paying attention to the pages themselves) to actively and appropriately playing with toys.

Back to Tony’s turtle…he now wanted to demonstrate the proper care and feeding of his plush little friend, and promptly put the cup of milk to the turtle’s mouth, and said “eat” and then “mouth” together. He did this a few times, and then decided that I obviously needed a lesson in turtle anatomy, and we went over the various body parts like “nose, mouth, eyes, hair, feet and paw.” (Yes, to answer your question, this turtle DOES in fact have paws!) I also asked Tony to “kiss” and he did this a number of times, either kissing his turtle directly, or blowing an air kiss with his hand and making the “mmm-whah” sound to imitate my kiss.

This continued for a little while, until I tried getting Tony to “sleep.” He pretended to be sleeping, and turned his head and closed his eyes and started snoring…then said, “wake up” and opened his eyes and sat upright. We did this for about 5 more minutes, until Tony decided that playing peek-a-boo from behind his turtle would be a fantastic game to play. So Tony covered his face with the turtle until I asked, “Where’s Tony” and then he’d move the turtle from his face and say something close to “I’m right here.” We did this for quite some time, until I trued to again suggest that it was time to go back to sleep. He was somewhat receptive to this, and pretended to sleep, and then wake up again. He was actively rubbing his eyes, so I knew he was tired…but he really seemed to need to communicate and connect with me…so I stayed a little longer in his room rubbing his head (he loves that) and just sort of softly speaking to him about what a wonderful conversationalist he was, and how proud I was of his accomplishments and that I knew inside his head he had HUGE stories to tell and was rapidly figuring out how to convey all of this to the world around him.

I left his room around 3 a.m., and he was quiet for a little while…and then Marlaina and I heard him start back up with his tall tales. Apparently his turtle is a very good listener. These stories…actually, I think he was trying to teach his turtle the new things he’s learned…continued until almost 4 a.m., and Tony slept for a few hours and woke back up with the same energy he had in the middle of the night.

I can only surmise that Tony’s brain is going through a period of intense development (to match his rapid physical growth) and he’s just mentally active and alert and reveling in his ability to finally tell his story. Since one of Autism’s hallmarks is a marked inability to facilitate communication, the fact that Tony is actively reaching out to communicate to/with us is so vitally important, that if he chooses to engage us in the middle of the night, so be it. There is never a bad time to talk to Tony!

Tony’s musical interest is still very high. He often will sit in his bed when it is naptime playing his toy piano and humming along. He’s more often than not on key, which is pretty amazing. He loves all forms of music that he hears during his NOGGIN and PBS programs, and will look at me when a song is playing and bop his head to the music and try and sing whatever song he hears. He is pretty obsessed with Blue’s Clues, but what 2-year old isn’t?

We watched Tim Burton’s Nightmare Before Xmas two weekends ago and he absolutely LOVED it. I don’t think I’ve ever seen any two-year old sit still through any movie. We watched the DVD again the next night, and he was still enthralled. Of course, with a musical score by Oingo-Boingo’s incredibly talented Danny Elfman, this only proves that Tony has terrific musical taste. He also really enjoyed HAIR!, and Wizard of Oz. Interestingly enough, he does NOT like Michael Crawford’s version of Phantom, but loved the film adaptation of the musical. Tony does NOT like country music as a rule, and much more prefers classic rock, hippie rock, and singers like Billy Joel, Jimmy Buffet, Elvis Costello, Joe Jackson, and Van Morrison. Do not even attempt to force him to listen to a “hair band” because he’ll have none of it!

Tony has a morning ritual that is pretty funny, that I need to mention for posterity. Since Marlaina wakes up before me (I often work later into the evening) she and Tony bathe first, and then Tony excitedly bursts into our bedroom to wake me up. He is very demanding in this respect. His day MUST start off with a visit to wake up his dad…and after he’s made sure that I “wake up” he will finally allow Marlaina to get him dressed and ready for his day. Whether or not this is part of his ritual, or just a genuine desire to see me in the morning is subject to interpretation. It feels more like a desire, though…since he has a definite need to make sure I am awake before he continues his day. It is pretty funny, though, in the sense that every morning begins with a Seussian homage to “Hop on Pop.”

Literally.

(I imagine there are far worse ways to wake up and start your day…)

This past weekend we managed once again to visit my parents in Beaufort (there was a fund raiser for the Democrats) and while the oyster roast wasn’t really Tony cup of tea, after retiring back to the Bay Street house Tony found his groove running around the front yard and climbing up and down the stairs of the big wraparound porch. This kind of physical exercise is so important to his well being…He always seems to be more relaxed after releasing so much energy.

Tony’s diet still consists mostly of chicken and potatoes and spicy bean chips…but since he gets an abundance of vitamin and Omega 3/6 supplements, I’m not overly concerned about his food intake. For certain, Tony bears little resemblance to the multitudes of overweight 2/3 year-olds we see about the area. He is broad shouldered, very solid, and has no belly.

Ok…so if this sounds a little rambling, I apologize. Lack of quality sleep last night is playing into all of this. Hopefully anyone reading this can take away useful information!

Onwards and upwards, Tony!

Love,
Dad

Tony met his baby cousin only a week ago, and while formally never taught the word “baby,” he saw Sidney and started saying baby right away. And didn’t stop. In a very autistic way, he has start obsessing somewhat over babies, and everywhere he sees an image of a small child, he says “baby.”

We decided that perhaps Tony would like a baby doll, and so Marlaina and the girls went out to KMart to see what they could find.

They came home with a remarkable life-like tan baby (who smells slightly of lavender) and after Tony woke from his nap, we presented the baby to him.

They have been inseparable ever since…with Tony ‘manding for the car (pronounced crraa) and the baby (said very clearly). So we took Tony to Chik Fil A for some french fries (gluten free…after the trauma we suffered last month with McD’s now-revealed gluten-laden fires, Burger King and Chik are it) and then headed home. It is a special treat for Tony to go for a ride, and we always reward his particularly good days with fries. While in the car Tony spoke to his baby, pointed out different parts of the baby’s body, and even had the baby “jump,” “shake-shake-shake” and wave “hi” and bye” to us.

TOTALLY AMAZING.

But it gets better…when we got home and put Tony in his high chair to eat, he wanted the baby next to him. Tony then proceeded to feed the baby french fries, saying “yum yum yum” and also put the cup to the baby’s mouth saying “kkkkkk” which is his short word for cup. He continued doing this throughout his meal, and again made the baby act out specific actions.

We were completely blown away.

Tony is demonstrating that he knows this baby is another person, and needs to be cared for. He has demonstrated empathy for this baby, which totally contradicts (at least from what I have read) the Theory of Mind in Autistic children (especially young toddlers like Tony).

But it gets better…

He continued playing with his baby, and added the girl baby (in pink) to the mix, and sat them down in his recliner (the THINKING CHAIR) and started playing Blues Clues with his new students!

AMAZING!!!!!!!!!!!!!!!

He is actually interacting with them as if they were other kids. He even came over to them and point out some different objects, which he brought to them.

This type of play is SO ordinary for TDCs (typical children), but for Tony at the tender (Autistic) age of two to be picking up UNPROMPTED on his own indicates that he is really starting to “learn to learn.” His mastery of words grows every day, and now he is displaying emotional interaction and demonstrating imaginative play on a 12-18 month old level. Maybe higher.

I guess I can’t express in just mere words how huge this is for us.

It is a funny thing…prior to having an Autistic child, I always though the term “special” as it applies to developmentally delayed kiddos was “nice” and a good way of avoiding odious terms like “mentally retarded” or “slow” or “handicapped.” But the larger reality is that these kiddos ARE special and that with each new developmental milestone, a very special learning moment is displayed…and that is TRULY special. There is simply no better way of looking at it.

Any how…that is my February update for now. I may write more as this month moves forward. In fact, I need to recap Tony’s second (and MUCH better) camping trip at Edisto during the full moon. I’ll do that later this week, I think.

Love,
Dad/Anton