P.J. is still climbing into and onto anything and everything he can, although he doesn't do it nearly as often as he used to. We no longer have to bungee cord our stools under the table, and he can be trusted in the kitchen as long as someone is in there with him. But, given half a chance, he would be on top of the counter lickety-split. He is now using a PECS chart for a few things consistently and I can hold his hand to walk for short distances (but then we have to put him in a stroller). He is saying a handful of words that anyone would understand, and a whole bunch more that only the people who are around him would understand. All in all, he is moving in a positve direction, although it feels like we have been at this stage forEVER and that it's never going to get better. We look back at the time he was diagnosed to now, and we see just how far he has come.

I know I have said "The absolutley most terrifying thing that has happened..." before, but this story takes the cake:

We had taken all three kids to Disney a while back and P.J. didn't do so well. We decided that we wanted to take Danny and Kerri again, but didn't want to leave P.J. at home with a sitter. So, we hired a sitter to come along with us. She would stay at the hotel with P.J., take him swimming, play on the computer with him, etc... and Adam and I would take Danny and Kerri to Disney. Everything was set. The babysitter and P.J. were eating breakfast and the four of us left at 7:50 to catch the tram the The Magic Kingdom. I called to check in on P.J. and the sitter at 8:10, and everything was fine. We got to the park, had lots of fun, and Danny and Kerri were actually getting along. Things were running smoothly. I called to check in around 11:35. The sitter sounded a little off, but not enough to ask anything. I called a few times during the day and night; all was well. We spent the entire day at the park. We even stayed for the electric parade and the fireworks. We got back to the hotel at 11:30. P.J. was fast asleep and the sitter had waited up to make sure we got back. Everything went fantastic. The next morning, I was coming up from the pool with P.J. in the stroller and the housekeeper stopped me and said " you know, this little guy was in the hall yesterday..." I was ready to explain away anything that he had done and then apologize if neccesary. She went on to say that he was in the hallway for quite some time ALL BY HIMSELF! I asked her "about how long?" The next thing she said dropped me to my knees. Se said she didn't know exactly how long, but he was out at least an HOUR AND A HALF! She explained that at 8:45am, when she started her shift, she saw P.J. sitting in a chair by the elevator. She took no real notice because he didn't look distressed, nor was he crying and didn't seem lost. She went about her duties and saw P.J. a few times through the morning. It wasn't until he tried to get on the elevator with a family, and that family brought him to the housekeeper, that she realized "something's not quite right with this little guy." She then called security. Security came up and saw the wrist band with information on it. He called down to the front desk to find out what room was assigned to the Pace family. He knocked on that door, and there was no answer. About 5 minutes later the sitter came running out and grabbed P.J. I could barely breath at this time. Just thinking of what COULD have happened. I went into the room dazed. I went on auto pilot and packed up the entire room to go home. I called Adam and told him the story. When he came up he confronted the sitter. Her story was that she had gone to the bathroom and was in there for "awhile". She heard P.J. opening and closing the door and when she got out he was gone. She went looking for him and couldn't find him, not knowing what to do she paced in the room. She went back out and the security guard had him right there. Her excuse for not telling us was she didn't want to ruin our day at the park and that she was going to tell us eventually. The next day, when I was a little more composed, I called the hotel to speak with the security guard. After speaking with him I realized that P.J. was not out for an hour and a half , he was out for TWO AND A HALF HOURS ALL BY HIMSELF!! The housekeeper saw him at the begining of her shift, 8:45am; the security call was documented at 11:04am; and the call was "cleared" at 11:15am. With all of this information now, we know in our hearts that the sitter must have forgotten to latch the door and fallen asleep. There is NO WAY her story adds up. Needless to say, we DO NOT use this sitter anymore.

Project Lifesaver

In March, we started a new therapy called "The Play Project". It's based on the Floortime Model. Our therapist comes once a month and we basically learn HOW to play with P.J. the way HE wants to play. It kinda gets us into "his" world so that we might be able to lead him into "our" world. It's definitely interesting. We have only had a few sessions, so it's still early.

We stopped going to the ABA Acadamy in April. P.J.'s behavior had gotten so dangerous at home, we had to get someone in the home to help us out. We got in touch with our case worker at our insurance company. She informed me that there were ABA therapist that could come into the home, or go out into the community to work on P.J.'s troubling behaviors. We found ABA Solutions, Inc. These therapists are PHENOMINAL! They work with P.J. so well that it's almost like they were made for him. They are even working on potty training him! One of the things that lead us to the decision to get help at home (and caused us much stress) was that P.J. could now climb over the pool guard fencing in LESS THAN 3 SECONDS! The fencing almost stands FOUR FEET HIGH!

A New Therapy:

A Shift with ABA Therapy

Another Horrifying Episode:
P.J. is making great progress with his talking. He says "I want chewies please", "I want open please", "all done", "I want mama please", "I want dada please". It's not real clear but I think most people would understand him. I always crouch down and say "Give me a hug" or "give me a kiss" and he does. One day, out of the blue he came to me and said "give me a hug" and it was clear as clear could be!

He is also amazing us with his math skills. He was on this toy laptop computer. It was asking him to give the next number in a sequence , like 64, 61, __, 56, AND HE WAS GETTING THEM RIGHT! He can do addition problems, and he can read many words like dog, cat, daisy... he can also read all of the color words like red, black, brown, yellow, blue...All in all things are going in a positve direction. We will always have bumps in the road, but hopefully the bumps will get smaller, and maybe even fewer.

"the most horrifying thing that happened..." because no matter what has "happened" it's ALWAYS horrifying. We went to the mall to get all three kids out of the house. They played in the little play area until we started to get hungry. So we all went up to the food court. Adam went to get Danny, Kerri, and himself something to eat while I sat at the table watching over the kids. When Adam got back with food, I went to get something for P.J. and me. All of a sudden Adam comes running up to me saying "P.J. is out of the stroller, he's gone!". I frantically ran to find the nearest mall security person. When I found one I blurted out "MY 5 YEAR OLD AUTISTIC SON IS MISSING!". We went through the discription, last seen location,what he was wearing blah, blah, blah. I started running around telling ANYONE and EVERYONE "My autistic son is missing" One lady said "how old is he?" andI replied "5". She said "I saw a boy in the restroom that looked like he might be lost". I ran in that direction. At this point it felt like it had been an hour since he went missing. My cell phone rang. I looked at the number, didn't recognize it and wasn't going to answer it, but I did. A man's voice said "We have your son". Frantically I said "where?!". He said "in the parking lot". "Oh my god! Is he O.K?!". "He's fine". I lost it. I started crying and I kept asking him "where are you?". After what seemed like an eternity, we caught up with each other in a department store. Now that was scary. Several months ago a friend of mine had given me some hospital allergy wrist bands to write my cell phone number on, just in case something like this happened. The written information on the wristband was almost not visible. As soon as we got home, I made a new wristband for him.

Little by little...
O.K., O.K., I will stop saying...

In June we found out about a program called "Project Lifesaver". It's a program for people with cognitive disabilties who tend to wander. The Pinellas county sheriff department placed a radio transmitter on P.J.'s ankle. If we lose him or he wanders off, we call 911, tell them that we are Project Lifesaver participants, and they will dispatch a deputy trained in the program to come and find P.J. We haven't had to use it but it does give us a little reassurance.

P.J. was getting too big for his crib with the crib tent. I tried one of those play tents. Hah, that was a joke. It cost almost $60 and it was made with a material that was just a little better than PAPER! Not to mention it fit ON TOP of the mattress. Then I thought "hey, what about a REAL tent?". I went to the local sporting goods store, told them what I was looking for and what it would be used for. They looked at me like I was nuts! I went home and started looking on the internet for a "stand alone one man tent". It just does not exist unless you want to spend over $200.00! I finally got to the web site www.REI.com and found one for $189.00. But I couldn't tell if there was enough mesh so P.J. could see out and we could see in, and so it wouldn't get stuffy. I called customer service and was connected to "Carrie". I explained what I needed and what it would be used for. She actually empathised with me, and after about 5 or so minutes, we decided that the tent would not meet my needs. She promptly said "hold on, let me look around to see if I can find something else that would work". She had me look at a few other tents, all of which were nice, but not really what I needed. The last thing she pulled up was called a "Bug Hut". It was PERFECT. It was a two man tent, (but the dimensions were only a little bit bigger than a twin mattress), ALL mesh, (it wouldn't get stuffy inside), you could see in/out, and it was only $89.00 with FREE shipping! After all was said and done she had spent almost an hour with me. Talk about customer service. Once we had it up and ready, P.J. LOVED it!

A New Bed

We had to bite the bullet and have P.J.'s bedroom wall built all the way up to the ceiling. I had put P.J. in his room so I could do some things on the other side of the house. When I got back, he was in the living room! There was nothing in the room that he could climb onto, mind you. I couldn't believe it. I yelled at Danny and Kerri to find out which one had let him out. They both SWORE it wasn't either of them. So I looked into his room and saw that he had piled 5 PILLOWS up and was JUST tall enough to get the tips of his fingers onto the top of the wall and then shimmy his way up and over the wall! The next day I had to call our friends to come and "seal up" the room. Now there is a FULL wall and door, floor to ceiling. P.J. definitly keeps us on our toes to say the least!

Bite the Bullet