Shocked again

Friday we had a visit with a child psychologist who we expected to give us the diagnosis of autism or possibly PDD. She took us back to her office and gave Avi one of those toys where you pull the beads along the wire tracks. He was pretty underwhelmed by it and started looking in the cupboards for something else. He eventually found a box full of cars and immediately turned to me, looked me in the eyes to make sure I saw and signed, "play." His smile was huge at his accomplishment of finding the cars. He kept signing the color of the cars or the word car or fire truck or whatever he found. The doctor kept her eye on him while talking to us about him and the things he did and does. She went over his entire medical history and his last visit and finally gave us her opinion. First she said, "He is very complex." She said that there are several things that he used to or now does that make her think it could be autism, but there are several more things that he does that do not fit autism. One of the things that she noted was he was teasing her, signing spontaneously, was very social and he maintained good eye contact with her. She also said his playing with cousins and neighbor children and other things we told her about would be very atypical for a child with autism. She said if she was hard pressed, very hard pressed she might give him the diagnosis of PDD, but she felt like it was almost certainly something else. She suggested to see a geneticist and a developmental peditrician and I asked about getting an MRI of his brain. She believes that the most likely cause of his hand flapping and not speaking is genetic. If the MRI results are in line with the hypoperfusion idea then we'll most likely persue treatments with the doctor that gave us that as a possibility. We still don't know what is going on but the main message has not changed, Avi is a great little boy.

So we left feeling elated. Everything we had hoped and prayed for happened. Not only was the diagnosis changed, but Avi changed in positive, meaningful ways. We feel so blessed to have even witnessed all of this. So we've started on a new journey. We thought we knew where we were headed, but we are off on a whole new direction.

This morning Avi peed in his little potty for the first time. This is just another step on his journey. Our sweet little preemie growing up and learning so much.

We went to Avi's play group today. It was different. Avi's old teacher is gone and the new teacher is a little. . . well different. He's much less animated than the other teachers and doesn't seem as attentive. It didn't seem to bother Avi at all. He loved the swings, the ball pit, and everything else. After play time we went to the work room and some of the kids were sitting at the table. Avi pulled up a chair and sat down with them. The teacher reminded them that it wasn't time to sit at the group table, but at their private tables to do the learning box. I was really surprised to see Avi following the lead of the other children. He has become such a social little guy lately. We seperated but Avi was eager to join back up with the other children. He played with the playdough, even though he HATES it and even played with the rice/beans box. He started off not wanting it to touch his hand but eventually was putting his own hand into the box and feeling the rice and beans. He did really well. Then we sang our songs and he started doing the wheels on the bus by himself. We left and he was so sad. I'm sure he'll be excited to be back at the playgroup on Thursday.

The weekend and the Monday were amazing. It turns out that Avi loves fireworks almost as much as he loves his cousins. He loved playing with them and begged to go back to them when we came home. Then yesterday we went to play with the other children who live in our complex. Avi normally plays around them but yesterday was different. I will never forget the image of him standing at the box where the other children were playing. He looked up at them and smiled and laughed and really played the game along with the other children. It was amazing. I've never seen him so social! Little things really give you a lot of hope.

We saw a "biomedical" doctor yesterday too. It was interesting but I'm really confused now. He suggested a few different diagnoses that he believes we should look into. It doesn't come cheaply. I'm not sure what to do, but i want the very best for my little Avi.

I hope that Avi knows that I love him, that nothing he does can change that. I hope he learns to believe in himself as much as I believe in him. I believe hat he is fully capable of anything. I hope he knows that Autism (or whatever it turns out to be) is a diagnosis, not an excuse. I believe that he can over come any obstacle placed before him.

Fireworks and other explosions

I was lucky enough to get this weekend off. Independence Day has always been a favorite holiday so we were excited to spend it together. We went to have lunch with Debbie's mom. Avi showed off his signing skills with his flashcards and then showed her how well he does his "learning box" activities. It was a good visit. After that we drove to my parents to have dinner and do fireworks. We never would have guessed how much Avi would love it. He spent much of the time with his cousin. She would hold him until her arms were too tired then she would set him down. He held her hand and carefully followed her lead. She took good care of him and he really enjoyed playing with her. When it was time to leave he kept signing "more," but it was late and he hadn't had a nap. Once we got home his crying was quickly replaced by snoring. He slept until late morning then took a very long nap later that afternoon.

We decided to try a video with new signs. He has already started mastering the new signs. Whenever he finds something he knows the sign for he insists on getting our attention and showing us the sign. Its nice to see another signing explosion. . .or maybe its still the same explosion, it's hard to say.

Today we're having a fast for Avi. My family is participating. I think he'll be excited to see his cousins at the break the fast dinner we're having. While we were in Las Vegas and I was struggling with the concept of homeopathic medicine I decided that I believe in things like fasting and prayer I can believe in homeopathy. Since then I have seen the efficacy of homeopathy. Like I said I believe in fasting and prayer and I believe that this will help Avi, and us as we try to navigate through this complex time.

On the Future

It has been blissfully slow here at work. That leaves me with time to sit and think. Of course there is a lot to think about, my wife's being sick, her pregnancy, our unborn son, our planned trip to Disneyland. Inevitably I think about taking back Avi, about how to help him and what his future holds. Debbie and I were talking about what he'll be able to do and what he might not be able to do. Thinking about it tonight I decided something. There is nothing, absolutely nothing that he can not do. He can do anything he wants to do. He was born only 2 pounds 14 oz. His body was too small and immature to breathe, yet only a few hours later there he was breathing doing just that, fighting from the first. He was too small to eat but before anyone expected his feeding tube was removed. There was more fight in his tiny little body than in most men. Before anyone expected he was home and his fight continued. He learned to hold his head up, sit up, turn over, crawl, walk, feed himself and now to communicate despite every challenge. His fight continues and I believe he will continue to defy all the odds and challenges that face him. He is a brave boy, advancing and fighting against something he doesn't even understand yet. While I was talking to a friend, she mentioned her brother, who has autism didn't know it. He asked his mother and she told him. I hope Avi will not know, that when he learns it will be only a diagnosis, not an excuse. His is a strength greater than most and I hope he does not lose that. I know I'm a proud father, one of those obnoxious men who thinks their kid is the cutest and smartest no matter what, but it's true; Avi is amazing. I feel very lucky to have a little boy like him.

Brace yourselves, in September I'm going to by twice as obnoxious! When our son Itai is born I'll have two little boys to brag about, dote upon and love.

This week has given us a lot of hope for Avi. He's doing so well. Two days ago Debbie told me he wanted to go to outside but she wasn't feeling up to it. He walked away, put his shoes on (all by himself for the very first time), turned off the TV, waved goodbye and went to the door. She couldn't say no after that. :) Yesterday was Avi's playgroup. He absolutely loved it. It was his second trip and his teacher said that he really came out of his shell. He was running around looking at the other kids and laughing as hard as he could. When we played with a parachute he laughed and laughed and kept signing "again" or "more." Then when we sang the songs to say goodbye he really got into them. We've been singing them since and he loves it.

A few days ago two of the neighbor kids had a birthday party. Avi and I went to it. It was a pool party and I was worried that Avi wouldn't like it, I was wrong. He couldn't have had more fun. He ran from the pool to the slip and slide and back doing his best to keep up with the other children. He didn't want to leave but after two and a half hours was exhausted. When I picked him up and carried him away he was shivering slightly and whining, pointing to the pool, but he knew he was too tired and cold to put up a fight. He ate his lunch and fell asleep for hours.

Day by day

So eventually the days stop dragging on, stop moving slowly and painfully and start returning to normal. It took probably a week for me to get my appetite back and to feel like like would be "normal" again. There were some really bad days and a few nights at work, but things are gradually improve. We went to Las Vegas to a doctor of "integrated medicine." While we were there we noticed Avi really started to pick up on sign language. Now he's up to more than thirty signs and its hard to keep up with all the new signs he's picking up. He's a very different boy now. He's communicating so much more. I think the ability to communicate really helps him be less frustrated. We've really noticed a change in Avi over the last few weeks. I'm not sure what has made the difference, but I'm glad to see it. I was definitely a skeptic about homeopathic medicine and still didn't know if any of his changes can be attributed to his homeopathic remedies, but something is definitely different.

Its been so amazing to see him learn so much and be so happy about it. He's still doing his speech therapy and he's in a structured play group. He had a occupational therapist evaluate him, but I don't think the therapist is coming back. He didn't seem to think Avi needed his help, we'll see. We're going to a different homeopathic doctor just to see what he says. Avi still has an appointment in July for the specialist and we'll probably seek a second opinion. Poor little guy, he's had nothing but doctors his whole life. I thought when he turned two, started growing and had escaped being premature unscathed. I thought we were done with the doctors, the clinics and the special programs.

One of Avi's favorite signs is "baby." When Itai is born in a few months I hope that he'll still like babies. I really hope that we'll still be able to give him the attention he needs while giving Itai the attention he needs.

Today has been a hard day as well. Since Avi woke us up early this morning we have noticed things we've never noticed before. Were they always there, are the new or are they just a sign of things to come? We're trying to saty active, but my stomach is tied in knots and I question everything I'm doing. I never know if I'm doing the right thing or not. I still have way too much time to sit and question everything I do. As for Avi, he's happy today and is so affectionate. I don't know if its just a coincidence or if its in response to our emotional strain, but he has been very cuddly and free with his kisses. We've been trying all day to do the things we were told to do. All that constant work on top of a long sleepless night means were exhausted. I think it wore Avi out too. He fell asleep a little earlier today than normal and he fell asleep without a fight. The last two days have been full of calls and visits o family and firends. We've said so much that there's nothing left to say, but it feels like we haven't said anything! My heart still hurts and feels like treaching out through the darkness and the space to someone, to anyone that can help me. I am surprised to find myself open to ideas that I had previously thought incredible. I am willing to do things on the off chance that it will help even in some small measure.