Day Seventeen

It was the best of times, it was the worst of times.

Yesterday started off great with Chandler feeding himself with a spoon. Then he fed himself half of his brothers peanut butter and jelly sandwich and he spent the rest of the day riding the gluten train! He just walked around the house crying until bed time. He is a bit better today, but not quite back to himself. Guess that confirms that the GFCF diet is working.

The one other cool thing that happened was that just before bed time I was sitting in the dining room talking with a friend and he came and got me. He took my hand and led me back into the bedroom where we do the sessions, climbed into the chair, and tried to turn the music on! I guess he had felt so bad all day he was craving a little peace.

He has done that three times today, and after the first time I had moved his car seat into the car so I could take them both to the store. He just climbed into the chair and sat the whole time. I just give him a drink and a bowl of snacks and he is good to go.

Today his floortime therapist came and she commented that he seemed calmer, more aware of what was going on around him, and was babbling much more. Go Chan!

Day Sixteen

HOLY CRAP, HE IS FEEDING HIMSELF! WITH A SPOON EVEN!

I sat down to feed him his beloved Gerber bananas and berries and before I could get the spoon in his mouth, he took it away from me and did it himself. Then he just kept going. He did this once before, but it was more like playing, dipping the spoon in and then licking it for 5 minutes or so. He didn't actually get much food in him. This time he has finished almost the whole thing just since I sat down at the computer.

Mommy is happy.

Day Fifteen

So the fist few days at home did not go completely smoothly, with Chandler getting a bit agitated toward the end in the morning sessions, and falling asleep in the evening sessions, but I think I have figured out the right combination. The magic bullet seems to be to set him up with a bowl of chips, yummy enough to keep him happy, crunchy enough to keep him awake.

I am also adjusting the set up a bit, I will take a picture of it tomorrow so you can see it.

Chandler is eating like a horse. He has been such a picky eater and was a bit on the small side, but he is starting to plump a bit. I dunno if it is the light or what, but he is constantly asking for food and eating things that he wouldn't have before this treatment started.

Another update

I have a wonderful friend named Julia and she has a big giant heart. That is one of the reasons we chose her and her wonderful husband Craig to be Chandler's god parents.

Well today Julia showed up at my house with a gift certificate to a spa and sent me off to get a rub down while she watched my boys. God has given us some wonderful friends.

So Godmommy Julia had some cool stories to tell when I got back. She said that he was almost a different kid from the one she knows. She gave him some chips and he said, "thank you" (Scott was there to verify that one).

She was putting in the Monsters Inc. DVD and could not figure out how to get it to work. He stood behind her repeating, "Go." every 15 seconds or so. When she got it working, she turned and gave him two thumbs up and he flashed a huge smile at her.

And the bestest thing that happened while I was gone. He was watching TV and heard a car door close outside, so he turned to look out the window and said, "Ma". He was looking to see if I was home!!!

Last winter I started to worry that Chandler was autistic, but told myself not to be paranoid and decided that if his speech had not improved by his second birthday, I would start investigating it further. A week before his birthday, Julia was over and very gently brought up her concern that he might need some "extra help with some of the things". I could tell that she was talking around the word "autism" and I thought, "dammit, now someone else suspects it too". So I pretty much knew there that if I put it off dealing with it any longer I was just in huge denial.

Julia's most personal comment to me at the time was that she really wanted to have a relationship with her god son and that he had rarely even looked at her. So today it was really exciting to hear about all the smiles and eye contact and actual words that the two exchanged. It was a real benchmark of how far he has come.

update

Today Chandler's infant development specialist came in and seemed a little surprised at the improvements he had made and wanted to know about the program. When I mentioned that Scott said he seemed to have a different expression, she interrupted me and said, "I noticed that right away, his eyes seem more open". Nice to have objective confirmation. I thought people would think I was a little nuts for saying his "eyes were bigger".

Day Fourteen

So yesterday was our first treatment day at home and the first session went well, the second he was pretty upset at the end. Well he was upset because he was falling asleep and I kept poking him. I am going to experiment with a few different ways of setting him up and I will let you know what works the best.

Chandler answers to his name now almost all the time. Before the treatment, it was about 1/3 of the time, but now I am starting to take for granted that he will look at me when I call his name and actually get annoyed if he doesn't. Before this week, I always just assumed that he wouldn't look at me if I called his name and it was a nice surprise if he did.

Day Thirteen - First at home

So my husband has been remarking that Chandler just seems different. Of his comments, he has mentioned that his expressions are much more expressive and thoughtful.

I have a more specific description of his facial expressions. Hold on, this may sound odd, but... his eyes are bigger. I look at him now and every time I do I think, "what big beautiful eyes he has these days". I don't know if he is just opening them wider and actually looking at the world or what, but his eyes are bigger.

This morning we went to church as usual, but it was not as usual. It has NEVER been this easy to manage him at church. I unclipped his buckle from his car seat and he did the rest. He walked where I told him to and held my hand when I took it to walk down the street. It was completely struggle free and usually by the time I have him dropped off and get to Sunday school myself, I am trying to calm myself down and cool off from all the sweatin' I do trying to move him from A to B. I am really happy.

Day Twelve

Today is the last day that Chandler will spend at the center. I am eager to go home and see how Chan is in his natural habitat. I have wanted to comment that he is better with transitions, but I don't think I can really report that until he is back at home. He indeed has been really good in transitioning between things here, but he is on such a predictable schedule here (wake up, eat, play, get dressed, go to appointment, come home, eat lunch, play, go to appointment, come home, eat dinner, play, bath , bed) that he has not really been challenged with the unexpected at all.

This morning he and Kai were playing in the same room, and Chandler looked at him for the first time. Kai didn't see him do it, so there was no eye contact, but for about 10 seconds, Chan was watching what Kai was doing. I am gonna be watching those two like a hawk today to see if they actually have any interactions.

Day Eleven

So one of the things that they tell you to look for is a shift in affect. Chandler has generally been a happier guy in the last week. I mentioned last week that every day seemed like one of his best days from before we came. now I can honestly say that each day this week has been better than any of his best days.

When we first got here, Chandler had a melt down one night when I was trying to feed him. Danielle was really sweet about it and later gave me one of those, 'wow, I didn't know you had it that bad, you're doing great' talks. That was a week and a half ago or so, and I just realized that was the last time he really freaked out about any thing.

One of the staff members, Marvin, who has worked with Chandler the most since we have been here, was helping me put the car seat in the car and once it was in, we both thought we heard Chandler say "sit down" twice as he was climbing into his chair. If that is what it was, that would be the first new word he has used since we have been here, and in even in the last several weeks/months.

He hastried some new foods this week too. I have not been able to get him to eat apples (or any other fruit than bananas) now in the morning he askes for apple and has eaten peaches and kiwi.

But the biggest thing for me today was that he was playing with me a little differently tonight before bed time. Huge eye contact and he was really kinda flirting with me. It was so freakin' cute.

Day Ten

Nothing really new to report. He is still using the words he knows more often.

Talking to one of the staff guys today, he said that some clients are reporting improvements popping up even three or four months after the treatment is finished. That would be nice.

Day Nine

So last night Chandler was getting silly before bedtime as he is want to do, and he started spinning. Nothing new about that. What was new was that after about three revolutions he fell down! He looked up at me from his hands and knees, visibly disturbed by the whole thing, then get got up with a smile on his face and decided to give it another go. This time he almost immediately swayed half way across the room and then tipped over before even getting around twice. He was just a bit more upset this time, and I thought, “what is wrong with you my little spinner” Chandler being able to spin for a long time with out ever falling over like his big brother. Then it hit me, I remembered a mothers story about her son finally getting dizzy like normal kids when he started recovering from his autism! So I gave a good laugh and encouraged him to get up and try spinning again, evil yes… but I had to see if he really couldn’t do it any more. So again he fell down after about two revolutions, not a pretty fall either, and he was really upset and confused by the whole thing. At that point he decided that he was done with spinning and just spent some time flopping onto a pile of pillows.

Today he as been a bit more verbal. He now consistently asks for bananas and apples rather than putting my hand on them when he wants them. He is also babbling a lot more and eye contact with me and Danielle continues to improve. I am looking for it, but I still have not seem him make any eye contact with Soren or Kai.

I was talking to one of the staff members today and telling her how much I appreciate the atmosphere and that they are so cool about whatever my son is doing and not to have to apologize when my boy climbs under the receptionists desk or starts running into the offices. She said that they know how stressful things are for parents of special needs kids and just want to make sure families are relaxed when they are there. Apparently this week one little boy had peed in the trash basket in the waiting room and his mom was really embarrassed. The director of the center just laughed and said, “hey… he made it into the basket, good for him”.

Day Eight

This morning Chandler called me “mommy” for the first time in about two weeks. This morning he woke me up by sitting next to me on the bed and pushing me. I started patting him on the back, but he pushed my hand away several times and sounded like he was saying “don’t”. I remember thinking, “is he saying ‘don’t’?”, but then I think I fell back asleep. Danielle and I also think that he called me “Ginger” this morning, but it is hard to tell.

Now when I tell him it is time to go to the car, he goes straight to the front door and tries to open it. When I open it for him, he walks straight to the car and stands by the door waiting for me. When I open the car door and tell him to climb in, he climbs into the car and into his car seat on his own. He is also taking direction from me as far as getting out of the car himself and generally going where I ask him too. He might wander left for a minute when I am telling him to go right, but he eventually turns around and goes the right direction.

As it has been officially a week now that he has been laying still and letting me change his diapers, I feel that I can say with confidence that he is a new man in the diapering dept. Matter of fact yesterday I asked him to come up stairs so I could change his diapers, I got everything out and then started to leave the room to go get him (because I was sure he would not have gotten my request and would still be playing at the bottom of the stairs) and as soon as I got to the door, he came over the top step and ran into the bedroom! I am still a little stunned and would like to see this happen a few more times before I will be convinced that it was not a coincidence.

When I left last week, Chan’s floortime therapist, Jennifer, had asked that I make sure he sits down at the table or high chair to eat instead of letting him wander around with food. I told her I would, and boy I sincerely meant it at the time, but I have not had the resolve to be terribly strict with him given all that we are doing this week. Despite my lazyness, the last two times I have given him a bowl of snacks, I have turned around to find him putting his bowl on the table and climbing into the chair to eat. And he sat there and ate the whole time.

Ok…. Very cool thing just happened. I am sitting here typing and Chandler has been walking all over the house. No one else is here and I think he is bored. He came up and pulled on me to get up. After a minute or so of trying to get him to say “up” or “mommy” I gave in and he led me to the front door. I told him we were not going anywhere and came back to the kitchen, he followed me back in, looked at me and said, “car” plain as day. So we are gonna leave a little early for his afternoon session.

update

So I was feeling really good today about Chandler’s progress and got hit with a sad reminder of where he is.

Web arrived in Las Vegas with my sister and I called to talk to him before he went to bed. He was so happy and had lots of things to say about the plane and what was going on at the house. They were all on speaker phone and when my mother told him to talk to Chandler, Web said, “no, I can’t talk to Chandler, my brother can’t talk. He can’t talk very good”. I was really crushed. That was the first time that Web has ever seemed to notice that there was anything different about Chan.

It just made me so sad.