Changes.

Tony’s mom and I are now divorced, and I’m not quite sure where this personal account of his life is headed. I do have a lot of stories I could post about Tony, and some videos as well (he loves making movies).

At this point though, there’s a deep sense of ennui that fills me, at the same time knowing I did the best that I could for him, and the result of that involvement is that Tony will be mainstreamed next year into a regular Kindergarten program. That…that is the success story. His story. The story of Being Tony continues happily, I believe.

Since my last post in May, both Tony and I have been through some epic life changes.

I am now a single father, and Tony was evaluated in August by the Beaufort County School District and found ineligible for their special education program. There’s much, much more to write about with regards Being Tony, and I plan on a much larger update this week during Thanksgiving.

Stay tuned…
Anton

With the move to Beaufort and all the work we’ve been putting into the house, there has been precious little time or energy to focus on keeping BeingTony updated. This will change ASAP, and I plan on spending a good deal of time this weekend making updates to the software, and also updating the site and Tony’s progress. We’ve had a lot of steps forward, and some steps backwards with regards behavior. We may be running into a gluten wall again, and so we’ll be modifying Tony’s diet again to see if this has a positive impact on his extremely high (manic) energy levels and mood swings.

All in all though, Tony is settling into his new home in downtown Beaufort quite well.

New pictures will be posted as well.
– Anton

Sometimes Tony seems just like any other tired little three-year old.

Tony asleep in his mini-recliner with cup, and (of course) Turtle.

Dad’s note: We have been so busy with some major life changes that Tony’s blog has not had appropriate attention paid to it. That will change today.

(SISSY)
OK, we know that no one has posted here in…FOREVER. Sorry! I also know l’ve never posted on his website, but l have some things l want to share.

l’m Tony’s sissy, so l interact with him all the time. As you know, we think he is the smartest autistic 3 year old in the world and KNOW he is the cutest. But does the world know that? l’ve started writing a book all about Tony, so they will.

We still have no ABA therapists, but it’s working out fine. lf anything, Tony is actually doing better without them. Sorry, guys!

His latest obsession is strawberry milk. This is absolutely fine, because the strawberry syrup we use is sugar free, with lots of vitamins and minerals.However, if you look in our fridge, you see milk, milk, chocolate milk, and uh… more milk!

He’s also really into mail. Do any of you know the blues clues song: “We just got a letter, we just got a letter, we just got a letter, l wonder who it’s from?!”

We listen to it 24/7.

You might not be hearing fom us for a while, because we are MOVING TO BEAUFORT, SC.Can you believe it?!?!??!? We can’t either.

Click here to view the home tour we created.

HOUSE PICTURES

Towards the beginning of this month (around the 12th) we received word via email that both of our ABA therapists would no longer be working with Tony. Their primary reason was that they felt like his behavior towards them was unreasonable, and uncontrollable, and were somewhat threatened by it. We understood that they were probably just out of their league in dealing with a special needs child, and we parted ways.

I need to make note of the fact that since Tony’s original diagnosis in July/August 2005 of severe Autism, he has come a long way in terms of development and behavior. Most people who now meet Tony (our recent camping trip bears this out) find him nearly indistinguishable from other kiddos his age. He has his own peculiarities, but his behavior is far less extreme than ANY of the other Autistic kiddos in Charleston that our other trained professionals deal with.

We were originally alarmed by what our ABA girls had written…but then decided that perhaps their aspirations to work with special needs children were unrealistic, since Tony represents the very best and easiest of this segment to work with.

We will be transitioning Tony’s ABA program shortly, and are also looking into other PCA providers for him after he turns three next month. For now, Marlaina is managing Tony’s day with great success, and he still has his sessions with Speech and OT. We have noticed that Tony is now picking up words and language skills that we haven’t worked on with him, and judge that he is probably now learning through his own interaction with his environment. This is a tremendous leap forward for any Autistic child…and gives us a decent window into his academic potential with regards mainstreaming him into a traditional school setting.

So, for now, we have Tony 24/7 and are just dealing with him on our own. We hope to change that soon with his recent acceptance to Chesterbrook Academy. We’ll be sending him to school for partial days…in the mornings…starting soon. We’ll see how that goes. His Speech Path (beloved Jill) is certain that Tony needs more social skills and interaction with his peers, and this is the best route for him.

We agree 100%.

In the future, look for more posts and pictures from me (Anton-Daddio) as we continue to chart what life is like, Being Tony.

As I was so nicely reminded today by Anton, I haven’t posted in quite some time. This is not to say that I haven’t kept abreast of the happenings with the little guy! In a way, it’s exciting to go AWOL from the blog for bit…I just read back through my last few posts and to see the all the new and different things Tony is doing is fantastic! It’s easy to overlook the progress that we see on a day to day, or even week to week basis…but, when you step back and look where we were four or five months ago~

Since I’ve been seeing Tony at “school”, he’s really learned to adjust to the “oh no! where’d mommy daddy go?” panic that would hit him soon after they left. He has figured out what things he likes to do at school and what he doesn’t like. And, he’s definitely tried to establish some routines around the activities that are preferred. However, I, being the demanding person that I am (yeah, right!) will not hear of it! No routines at school…learn to enjoy the variety and the unexpected!! Well, we did keep things routine initially, while the adjustment phase was happening. But not one day longer than needed 😉 The thing is…Tony can deal with these “bumps” when they roll around. Some days and some situations better than others. Whether it is due to his improved comprehension skills or better understanding of concepts like “wait” and “later”, it’s hard to say. I know that Mom and Dad don’t always get to see this side of Tony at home…but it does exist!!

Tony has had to opportunity to interact with several kiddos when he’s at school. It’s common for Tony to look at his friend and say “come on, let’s go”. He’s pretty consistent with greetings when we/they come and go. Today, Tony chased another little boy around the room while holding a snake and making a hissing sound…lot’s of fun!!

I have been focusing on altering the manner in which Tony responds to questions…for example “Tony do you want to go on the playground?” Tony’s typical response is “playground yes” or “I want playground yes”. Not only is Tony using these phrases to respond to questions, but he is, at times, using them to request. I’m pushing Tony to use “I want _____ please” to request and a simple “yes” to respond to a question. The past few sessions I have been prompting him by asking the question and before he responds, verbally cuing with “say yes”. This has been working well.

I remain proud and thankful for the journey that Tony has traveled over the past year and a half and I look forward to our upcoming adventures.

When I got in today, Tony was upstairs taking a nap. He had an early morning with the speech therapist and was completely wiped out, so I set about cleaning up his room. About 2 hours later, I heard Tony coming down the stairs with Marlaina. His face was flushed with his rosey cheeks. Absolutely adorable! One of the first things I did was change his diapers and he started asking for the crayon marker store. Marlaina was craving some Chick Fil A, so we took Tony on a little car ride.

When we got to the crayon marker store(Publix), Tony was excited, that was until he realized that his mom wasn’t planning on coming inside. He started to get really upset when he didn’t see her getting out of the car, so I had to pick him up and take him inside. On the way there, he threw his cards and dropped his shoe. When we finally got inside and got him situated in his car cart, he continued to cry for his mother until we arrived on the office supply aisle. I pulled up and any kind of anxiety was forgotten. We ended up leaving with a kit to create artsy envelopes.
We got back in the car and went to Chick Fil A. As soon as we got inside, he was already asking for us to open the box up. I think he was expecting there to be markers or crayons inside, but there weren’t any so he started getting upset again. When we got home, he immediately started messing with his new item. He enjoyed the different colored stamps that came with it. After a little while of this, we went into his room and started watching Corpse Bride. He kept asking where his mom was the entire movie and Marlaina would have to repeatedly say that she was right outside the door. We eventually went into the living room to watch the Couch movie and then old Christmas cartoons. He’s already getting ready for christmas. After several replays of the cartoons, he started getting tired so it was off to bed.

11/6/06

Today when I arrived Tony was excited to see me. He had been up since 5:30 in the morning so he was a little tired. We watched tv for a little while and then decided to head to the Aquarium.

The Aquarium was pretty packed today. There were a lot of children there so Tony was excited to be able to run around with children his age. The first thing we did was head to the play area. Usually when Tony is playing with other children I try to get him to introduce himself. Today he did it without me prompting him. He said “Hi, I Tony!”.

After we left the play area, we walked around to look at the tanks. Tony then asked to go night night and go home, so we left. On the way home he said he wanted fries, but fell asleep in the car.

When we arrived home, Tony went upstairs to take a nap. While he was sleeping I cleaned up the living room and playroom. I also went to the grocery store to get a few things for him. When I arrived back home, Tony had woke up and came downstairs. We colored and watched shows the rest of the time I was there.

11/5/06 Today we went to Beaufort for Anton’s niece’s first birthday party. On the way down Tony fell asleep in the car, so he was full of energy when we arrived.

When we arrived at the house, Tony was greeted by Mazzi and Papa and other family members. He immediately wanted to watch a show so we put in Wiggles the Big Red Car. After watching it for a few minutes he manded to go outside. So Morgan and I took him outside. He was wanted to run around the perimeter of the back yard, then up the porch and back around. So Morgan and I followed as Tony got his energy out.

After we came back inside it was time to head to the birthday party. The party was held at the Park and Tony was overwhelmed at the sight of all the equipment to play on. He started off on the toddler equipment and then decided to move on to bigger things. We headed over to another part of the park and Tony ran on around on everything and went down the slide. He then decided to run to another section. The section had a huge slide. There was about 15 steps to get up to the slide. I figured Tony would be scared but he wanted me to help him up so I held onto him and followed behind him. When we got to the top of the slide he was notably scared. He didn’t want to go down. I looked behind us and figured it would be too hard for me to carry him down the steps, so decided we would have to down the slide. I put him on my lap and told him it would okay and we headed down the slide together. He was laughing on the way down and enjoyed it.

On our way back from the slide it was time to cut the cake, so we headed back to table. Tony sat at the table with all the other kids and tried a cupcake. He didn’t like how sweet it was. After trying the cake Tony was way to overstimulated so we headed back to Anton’s parents house to watch Blue’s Clues. Then we headed home.

11/2/06

Today was a rather short day with Tony. When I arrived, I was informed by Marlaina that it had been a long night. Which was reflected in the state of the living room and playroom. Tony had woken up at 11 and only slept this morning for about 3 hours. He was very tired and getting upset easily. Tony took my hand and headed me into the playroom.

When we got in the playroom he was manding for markers. I told him that we had markers in the living room and went out to get them. He started to get upset and said he wanted new markers. I told him we would draw circles with the markers and that seemed to calm him for a little while. After we finished drawing the circles, Tony was once again asking to go to the crayon and maker store. I asked him if he wanted to go to the park and he said “park yes”. So we headed out the door to go to the park. Once we got outside he started to cry for his mom. So we went back inside the house. Marlaina agreed to go with us, so we headed out to the car.

Once we got in the car, Tony calmed immediately calmed down. When we got to the park Tony started running towards the steps and wouldn’t wait for me to put our stuff down so we headed up the slide with turtle and cup. After about 15 minutes at the park it was obvious that he was completely wore out. He couldn’t even walk straight. So Anton took Tony up to bed and I proceeded to clean the living room and playroom.

After I was done cleaning, I headed to the Dollar Store and Walmart to buy some reinforcers for Tony. We are going to start potty traning him next week and wanted to have something to reinforce the behavior when he does it.

11/1/06

Today when I arrived Tony seemed a little tired. We ended up just coloring and watching some shows for the majority of the afternoon. He had OT and I didn’t want to wear him out. His OT session went really well. Despite him being tired, this was the first time I had seen him focused in a long time. He did everything Brittany asked without hesitation and was easily redirected away from the crayons and markers. On the way home, I was going to take him to the park but he fell asleep in the car. So when we arrived back home, Tony went to sleep and I cleaned up his playroom.