2007 Was a Great Year...

Happy New Year to all of you out there and in particular those of you who have accompanied me through last year's challenges and triumphs. It feels as if it was ages ago that I had to pull Jonathan from a daycare room of typical peers and pull him in a room of kids 1.5 years younger because he could not deal with the hectic and unpredictable environment of 5-year-olds. He had regressed so much last year this week that his ABA therapist feared that we would lose everything she had accomplished in the prior months. She was preparing him for kindergarten, yet he could not withstand being with kindergarteners. My almost 5 year old could only be with 3-year-old kids as long as they were not too loud. I was very worried for him.

His ABA therapist worked really hard. We made improvements towards his behavior and tolerance with all the biomedical interventions we were doing following Dr. Amy Yasko's protocol, plus all the intense ABA, OT, PT, diet and chelation therapy. We saw some major improvements during his birthday party compared to other years. He blew the candles and was excited about everyone singing happy birthday, but he did not really understand the meaning of getting gifts from people, how old he was. It was all still too abstract for him. So the improvements were not enough.

I met a wonderful lady towards the end of 2006 who taught me great things about all the different alternative therapies out there. The one in particular that I am extremely glad she introduced me to is Hyperbarics Oxygen Therapy (HBOT). I had heard about it during the Spring 2006 DAN! conference, but wasn't too sure what it was about. I was so desperate to find some type of a buster for Jonathan. I researched it after this lady told me how good it had been for her son, and read so many good things about it, that both my husband and I decided to give this a shot. So on March 27, 2007 we had our first "dive" http://recovering-jonathan.blogspot.com/2007/03/hbot-here-we-go.html. It was hard. Not as hard as our first Tomatis Auditory processing therapy session, but hard. However, we stuck to it. And boy, am I glad we did!

HBOT is tricky because the child actually regresses during sessions. When Vanessa turned 3 (May 10), we hired a lady to come dressed as Disney's Ariel, and Vanessa had the time of her life. We had kids over, and the lady painted their faces and made balloon characters, etc. Jonathan did not want to participate and when the lady tried to approach him, he started screaming like she was going to kill him. All he did was play with my laptop using Microsoft Paint. That was very depressing for me. For a moment I doubted the HBOT. It was so expensive and we were seeing such regressive behaviors that we were at times even disappointed. But again, the best thing we ever did was stick to it.

Jonathan kept making great improvements (I logged every day in this blog). And the biggest we ever saw were 6 weeks after he finished his first 40 dives. Conversational language. That was HUGE. However, I was very worried as we approached the summer that he was not ready for kindergarten. I enrolled him in a summer camp that was extraordinary. But he needed extra attention. I was glad that the play hired volunteers to have a 1-to-1 ratio, because Jonathan needed constant supervision.

So we decided to do a second set of 40 dives. We started dive 41 on August 1, 2007 (http://recovering-jonathan.blogspot.com/2007/08/hbot-41-started-new-session.html). We heard from many people that the second set was not as impressive as the first one, but it was necessary. Again, am I glad we did it! We finished right around when he started Kindergarten and he had an outstanding beginning. Up to this day, his teacher keeps telling me that he does great. Once in a while he tends to lose focus, but for the most part he is very attentive, he does everything he is told, and needs no "shadow" to help me complete his tasks. It is a dream come true.

However, I cannot stop there. Jonathan is not recovered yet. I am the first one to admit that his improvements are quite dramatic. So much, that he has almost mastered all of his IEP goals (Individualized Educational Program – contract between us and the public school system to receive special education services). We are probably going to have to have an IEP meeting earlier than anticipated to redo his goals. He has friends, he plays, and he follows complex directions without problems. He rides the normal school bus (not the special ed transportation) back home. He articulates much better and one can now understand him when he speaks. I speak to him normally and he understands. He is simply another child. But he is not recovered yet.

He has not had another psychological evaluation done yet. I don’t want his diagnosis changed yet because he still has areas that are delayed or not age appropriate. For instance, he is now hyperactive. He cannot stand still at all. He is still delayed with his expressive and even a bit on his receptive language. He still has a bit of low muscle tone (which could be a cause for his hyperactivity); and one of the big ones for me, he is not yet as empathetic as a typical child his age. The good thing is that he has demonstrated that he is capable of being empathetic. But his input threat hold is quite high and misses out on things. So we need to work on that (e.g., caring for a baby when he/she cries; caring for someone when that person is hurt; feeling the pain the other might feel if he does something that that person might find hurtful). So we still have a long way to go.

My next fear: 1st grade.

Jonathan does not yet speak like other 5 3/4-year-old kids and I fear that his classmates in 1st grade are going to give him a hard time. He has turned into a very sensible child. If Vanessa tells him that she doesn't love him, his heart breaks and comes running to me crying. So I don't want him to have a traumatic 1st grade experience. In addition, teachers are less patient. He needs to be able to keep up even more than now.

So we are going to do another session of HBOT hoping that it will be a catalyst again to help me improve on his expressive language (due to his verbal apraxia) and continue to improve in general. We start on January 29, 2008 for 40 days.

I am proud of my baby boy. He has worked so hard. His life has been so hard at such young age. And he has come a lonnnnnnnggggggg way. I hope for a bright future for him and I believe in my heart that he will have it.

I am leaving you with a few pictures from this past week during our family reunions. Jonathan loves to be around people and share and play. He does not get overwhelmed with crowds any more and loves to be the center of the attention (loves to read to people). Oh yes, Jonathan reads like a 7-year-old child.

Jonathan and cousins coloring together (baby was helping Jonathan and he liked it)

Jonathan, Illy and Vanessa riding the elephant. They had a blast!

Jonathan and Daddy playing Tennis with aunt Sarah's Nintendo Wii. Jonathan loved it and played very well. Doing "High Fives" after Jonathan did a good play.

Jonathan was very proud of himself for winning. I captured the words "YOU WIN" on the TV screen.

Jonathan reading to his uncle Hernan.