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.

HALLOWEEN NIGHT
(Photo album located here)

When I arrived today, Tony was gone. He was on a car ride with his mom to pick up “sissy” from school. While they were gone, I started to clean up some. About an hour later, Marlaina pulls up and I go outside to bring Tony inside the house. As soon as he walked through the door, it was turtle, cup and Corpse Bride. The next hour or so was spent preparing for our big night out. As soon as Danielle walked through the door, I started the process of getting ready as a witch. Tony was very scared. He seemed to hate the outfit especially the hat. It got to the point where he was on the ground, with his head buried and telling me to take off my hat and clothes. He doesn’t seem to like black too much. Everyone got dressed and we all took pictures. Around 6:30, we met up with the Bouchers and walked around the neighborhood. Tony sat in his stroller in the beginning, while Danielle tried to manuever it around the obstacle course.

Tony seemed to thoroughly enjoy trick or treating. When we finally allowed him to walk around with us, he was running up to the door with the rest of the kids and saying trick or treat. He was being a little curious too, telling people to open the door and trying to stroll in like it was his own. He liked the pumpkins. He started to get upset when there wasn’t one in front of every house, so the night was cut short. We headed back to the house. He was still upset when we got in, so Marlaina put the new Charlie and the Chocolate factory in. He was hesitant at first, repeatedly asking for Corpse Bride, but Marlaina fast fowarded to the songs and he was immediately intrigued. When I left, he was lying on the couch, paying no attention to anyone else except the movie.

October 30th:
When I arrived today, Tony was taking a nap, so I went into his playroom and tried to make some sense of the chaos. Not too long after, Tony was downstairs with a smile on his face and manding for Corpse Bride. He was in somewhat of a mellow mood, playing with his little people, until he started screaming for the crayon marker store. Anton and I tried to redirect him to something else. After 3-4 minutes, we were able to convince him to go to the blue bus but somewhat hesitantly. He still had tears running down his face. On the way to the door, we ran into Marlaina, who had awaken from her nap because of Tony’s temper tantrum. He ran to her immediately and buried his face in her. She asked him if he wanted to go get some fries, but his mind was already set on the crayon marker store. She grabbed her stuff and we were off to the crayon marker store(Eckards).

When we got there, Marlaina was just going to have me take Tony in but apparently Tony had different plans. As soon as I got him out of the car seat and took two steps away from the car, he started crying for his mom, so Marlaina ended up coming in. We went straight to the crayon isle and we managed to leave the store with only two items(Spongebob Coloring Set and Erasers). We got back in the car and headed to Chick Fil A for some lunch. On the way home, Tony was munching on his “fwies” and looking at his new items. When we finally got home, it was Corpse Bride once again.
After finishing lunch, I persuaded him to go to the blue bus. On the way out, he said “bye bye mommy, bye bye daddy.” While we were in the bus, I took the opportunity to get some ABA done since it seems like the only time when he isn’t distracted with some toy or show. Not too long after, the mail lady came. He opened up the window, and repeatedly said hi and asked how she was doing. After about 20 minutes on the bus, we headed back inside.

He manded for some “blue’s clues” as soon as we got in. He lied on the couch with Turtle and cup and was completely consumed in the movie. While he relaxed on the couch, I started to clean up again. 10 minutes later, Tony came in and started making a mess again. He kept asking to be lifted “up” and saying that something was stuck. There was a few minutes while he stood there and had a look on his face like he was constipated. A minute later and the result of the pushing and red face became obvious. I kept asking if he was Pee-yew stinky but he kept saying no and refused to let me change him. He started getting upset and Marlaina had to convince him to allow her to change his diaper. It was dreadful. The smell became extreme as soon as you took off his pants. After his diaper change, he was in a brighter mood. Not too long after, I finished up cleaning and Tony was taken off to bed.