Sunday, June 29, 2008

Fantastic Summer Vacation (long post)

We spent a week in Orlando with the kids. It was a wonderful vacation. We went with another couple and their 2 boys (4 and 6 years old). We have been friends with this other couple for 12 years and have made it a tradition to go away together on vacation once a year. This is our 11th year travelling together. We have become best friends and spend a lot of time together. During Jonathan’s the most difficult times, this couple always stood next to us, helping us and being with us. I admit it was hard for me to go away and watch how normal and happy their oldest kid was (same age as Jonathan) and see how lost in his world Jonathan was. They didn’t play together; they didn’t even acknowledge each other. When Vanessa was 2 and 3, she would play with their boys (the 3 musketeers we called them) and Jonathan would be in his own world, playing the Leapster or watching TV. But we (the two couples) have grown up together in the good and the bad times and we never stopped our annual tradition despite Jonathan’s most difficult times. So this year, we went to Disney World!

The entire trip was an adventure. We took the auto train last Friday (June 20th) and arrived in Orlando on the morning of June 21st. We got a resort with 2 bedrooms and a kitchen and decided to bring our cars and food to save on car rental charges and eating out every day. The 4 kids did great. The train left at 4pm and the kids watched movies, played video games. We had dinner together in the dinner train car. They were very well behaved.

We arrived the next morning, got our cars and went to the resort. We had decided not to go to the parks either Saturday or Sunday and spend time at the pool instead. Jonathan and Vanessa loved the pool. They spent a large portion with Christian and Nico Saturday afternoon. On Sunday, Jonathan didn’t want to go to the pool. Vanessa went with Daddy and Jonathan stayed with me while I got ready. I gave him breakfast thinking that he needed food. But he still didn’t want to go. I grabbed his bathing suit and headed to the pool with him anyway. I told him he could play his Leapster and didn’t have to go in and he was okay with that. On our way to the pool I asked Jonathan why he didn’t want to go back and he told me that it was because the water is too high and he didn’t like it that he couldn’t touch the floor. When we got to the pool, he noticed that Vanessa had “brasitos” (arm floats) and he decided he wanted to try it. He loved it and spent hours at the pool that day with the kids. In the afternoon, we went to Downtown Disney for fun and ice cream.

Magic Kingdom

The first park we went to was Disney’s Magic Kingdom. We got up early and made it to the entrance by 9:30am. It was hot and sunny. Disney has services for kids with special needs and people with other disabilities. I had researched it a few months back. I went to the Guest Services desk with a letter from the neurologist to explain that Jonathan has autism and they gave me a pass that allowed us to by-pass some of the very long lines. That was helpful because Jonathan still has trouble coping with certain things like long lines, heat and really hates the sun. The park was very crowded but Jonathan had no issues with that.

When we entered the park, Nico and Christian ran to get their picture and autograph taken with several Disney characters. When Jonathan asked Christian what he was doing and Christian told him about the autograph book, Jonathan immediately told me that he wanted an autograph book too. So Daddy went to buy an autograph book and pen for both Jonathan and Vanessa and we spent about an hour getting autographs and pictures. That was awesome. He was very excited and knew all the characters.

By 10:30am, Jonathan was very annoyed with the sun and we decided to go to rides. The first place we went to was the Haunted House. We waited in a long line because we didn’t really know how to use the special pass Guest Services had given me. Jonathan was moving a lot, in circles, from left to right. He hated the sun and asked for a shadow. When we made it in, he absolutely loved the ride. He wanted to do it again, but the park is so big we told him next time. The next ride, I decided to figure out how to use the pass. It would allow the 8 of us to go through the handicap entrance. I am glad that we got that pass, because it made a world of difference. We went to 3 worlds (there are 6 worlds I believe) and made almost all the rides with little wait time. Jonathan enjoyed the park tremendously. We left the park at midnight. Jonathan did not complain about being tired, not even once. He was rigid about food and we needed to feed him when he said he was hungry. And when he was really hot, we gave him ice cream and he was happy. He loved the parade. We had taken Jonathan to Disney twice before, but he didn’t remember. He never cared about the characters the way he did this time. He never cared about the parades. He never cared much about the rides (would suck his thumb and go into his own world). This time, he loved the park.

Water Park – Typhoon Lagoon

Since Monday was so hot, we decided to go to a water park on Tuesday. It was a very VERY fun day. Jonathan loved it. He got on a couple of slides where he had to get on a small raft by himself and totally loved it. As long as he was on that, he was not scared. But he didn’t do the slides without raft. I am going to take him to swimming lessons (both Jonathan and Vanessa) because Vanessa was scared too. We closed that park too at 8pm.

Sea World

On Wednesday, we decided to go to Sea World. I had been when I was 8 years old and I didn’t really know the park or what to expect. It was hard to get into it at first because we soon realized it was a park of shows and we needed to plan our day around the schedule. Jonathan liked watching the dolphins and orca whales. And he liked a sea lion show very much. It rained on us for about 1 hour with strong thunder and lightning, and he was calmed and not scared. He was annoyed about getting wet (even though he had a poncho on), but was not scared about the noise. He really wanted to get on a tower and the others wanted to do something else. He was soooo excited to go on that tower. It was great to watch him. Again, we stayed until they closed the park and we watched the fireworks. Jonathan loved them.

Disney Quest

On Thursday, we stayed at the resort in the morning (pool) and then took the kids to Disney Quest because we knew it was going to rain again like Wednesday. And I am glad we did because it rained for almost 4 hours. Disney Quest is a building with 5 floor of virtual reality games and an arts section. Jonathan liked most games. We spent almost 7 hours there (and I lost my small digital camera J - I was hoping someone would turn it in, but no one did. I even checked today). It was too much for Vanessa, but Jonathan enjoyed it. There were a couple of games that scared him. We went to dinner from there and made it back to the vacation house (as the kids called it) late that evening.

Universal Studios – Islands of Adventure

On Friday, we decided to go to Universal. At first, we wanted to go to both parks, but since we had made it in so late on Thursday, we let the kids sleep in and didn’t make it to the park until noon. At that time, we decided just to stay in that park. It was incredibly crowded and the sun was strong again. I went to Guest Services and they gave me similar passes as Disney so we could by-pass some of the long lines. That again made the experience very enjoyable for Jonathan as we were able to get on all the rides. Except for roller coasters and rides with steep drops, Jonathan got on everything else. Vanessa however got on all the rides her height would allow her. She loves roller coasters. We didn’t push Jonathan do anything he didn’t want to do because he was having such a fun time, it was not worth forcing him. I know that if he gets on those rides, he enjoys them. It is just getting him on them that is tricky.

That evening we went to eat dinner at Bubba Gump (restaurant from Forrest Gump's movie) and Jonathan ordered popcorn shrimp. I was concerned because he had never tried shrimp before and he just wanted it because of the word “popcorn”. But to my surprise, he ate the entire plate. Amazing.

Summary

It was a great vacation. Jonathan was always part of the group, hardly ever on his own. Enjoyed everything, never complained about anything other than the sun being too shiny and being hungry at times. We did not stress about him for the first time in years. It was great!

Spending an entire week with Vanessa, Nico and Christian was great. I can more clearly see Jonathan’s strengths and weaknesses. It is helpful to compare with neurotypical kids, so that I can better concentrate on the areas that he still has issues.

  • Mild hyperactivity – cannot stop moving, but it is not obnoxious. I keep telling him to stop moving. He does for 2 seconds and starts again. If I grab him so he doesn’t move, he stops but gets desperate and takes my arms off him so he can move
  • Eye contact - still has a hard time fully locking eye contact when I ask him to look me in the eyes. However, he has pretty good eye contact when he initiates it
  • Expressive language – sometimes doesn’t make sense or cannot construct large/complex sentences on the spot. But he has become quite verbal, so he tries hard to explain himself if we don't understand what he means
  • Appropriate playing – still not interested in playing with toys other than electronic toys. Not interested in building complex pretend games with toys on his own. He can do it for a few minutes (playing with a couple of tiny figures and making them talk to each other) and can play some pretend games with Vanessa but cannot build complex scenarios.
  • Tip toe walking – he is doing it again
  • Getting too close to people’s faces – when he is playing with kids or adults, he tends to get too close to their faces
  • Voice volume and intonation – when he speaks he still uses a very loud voice and his intonation, although better, is still flat
  • Humming - he still does it
  • Mild OCD - with time lately. He wears a wrist watch so he knows what time it is at all times

Monday, June 16, 2008

"How Many Uncles Do I Have, Mommy?"

School is over, but Jonathan is attending the public school child care program today and tomorrow. He normally just attends the morning; and the 2 times in the past that he spent the entire day there because of school closures, he was not very happy. However, today he was very happy to go. He has changed so much in just 2 months, it is weird (in a good way).

When we arrived, as soon as he was done putting his lunch bag in his cubby, a boy called his name "Jonathan, come on". He looked at me and said "bye mommy, I'm going to play". That was music to my ears. The ladies in this place love him. They told me that he was a very good boy and does quite well with the group there.

Grandpa took care of the kids this afternoon because I could not leave work early. He picked both of them up at school, brought them home, dressed them up for Tae Kwon Do and took them. It really shows how much they both have matured, because he tried to do this 3 months ago and Vanessa had a fit.

This evening, Jonathan and Vanessa played very nicely. They pretended that Jonathan was a daddy and Vanessa a little girl and that they spoke Spanish. They really tried to speak to each other in Spanish. It was quite cute to watch (where is the video camera when you need it, right?). Jonathan told me about his experience playing basketball today at school and that he learned that you use your hands to play basketball and cannot play with your feet. And he told me that he learned the "rules". That explained a lot because earlier today, when I got home from work, he came and asked me what our house rules were. I didn't understand and he said "I know 2. Put the caps in the markers and clean up. What else mommy?" So I came up with a couple, starting with "always be nice to your sister and be obedient".

After a while, Jonathan asked me to put Harry Potter 3 on because they had not been able to watch it yet. We saw number 1 and 2 last week. We sat together and watched some of it. They both can only tolerate so much of the narrative, so after the first 10 minutes, they were up and about. I made dinner and then watched the end together. I tried to explained scenes as they happened. Vanessa was very interested in the werewolf.

All of a sudden Jonathan asked me "do I have uncles, mom?" I looked at him and said "yes, tio hugo is your uncle, and tio Carlos too" and he was excited to hear those names. He was shocked they were his uncles. It was like an awakening moment "wow, I have uncles" is what he said. "How many uncles do I have, mommy?". So I counted 5 "Tio Hugo, Tio Carlos, Tio Juan Carlos, Tio Hernan and Tio Billy". Then he asked "how many aunts do I have?" I counted 5 again. "Tia Neni, Tia Nelci, Tia Michelle, Tia Sarah and Tia Sara". And he jumped "I have 2 aunt Saras'?" So I explained. Then he said "wow, I have aunts and uncles!". A few minutes later he asked "mommy, does Harry Potter have uncles? who is Harry Potter's uncle?" (and by the way, he is using prepositions correctly which is a big improvement). I thought hard as I had just told him that Sirius was Harry Potter's GodFather and I couldn't remember the uncle. But a few seconds later I remembered and said "yes, Harry Potter has one uncle. The fat guy, remember?" And he said "oh, yeah. the guy at the beginning of the movie that is mean to Harry". Wow, Daddy and I looked at each other in dismay. I said "yes, sweetie, that is exactly right". He is truly amazing me lately with his comments.

One thing that Jonathan is doing now is that he really wants to know what we are saying. If we say something and one of us laughs, he asks again until he understands the joke. He wants to know everything. If we say something and sound surprised, he wants to know too. So now we find ourselves explaining a lot.

DETOX
Two days ago, he had a horrible meltdown. I think it was detox. He normally recovers quickly when he gets upset, but this time it took him over 20 minutes to get over being upset. On Saturday, I took Vanessa to a playdate. I left Jonathan home with daddy playing the Wii because I didn't know where I was going. Since Vanessa was the one that was invited, I decided not to risk it. When I got there, the girl's mom asked me why I had not brought Jonathan and I told her that I didn't know and would bring him next time. She has another boy same age as Jonathan who happened to have ADHD. When we got home, Jonathan immediately asked Vanessa where she was. When she told him where she went, Jonathan got very VERY upset that he didn't come. And told me that he was mad at me for leaving him at home, that he didn't want to play Wii anymore. That he wanted to go with Vanessa to the girl's house and play. And just went on and on and cried uncontrollably for over 20 minutes. We had to get out of the house to just get him to think if something different.

Today his language was much better than usual. He used well structured sentences, prepositions and long sentences. Intonation is better. Still a bit flat, but much better. He is really trying. Vanessa mentioned a boy name George from school and he said "what many years George is" and I corrected him to say "how old is George". These are the types of problems that Jonathan is experiencing. But today he made less mistakes of this nature than normal.

Friday, June 13, 2008

Last Day of School (Kindergarten is Over)

It was an emotional day for me. Jonathan's kindergarten teacher had a "last day" ceremony this afternoon and all of a sudden I realized what a major accomplishment today was. I had a huge nut in my chest and tears in my eyes watching the video the kindergarten teacher made and seeing the teacher give each kid their report cards and awards and telling them that they are now "First Graders".

I approached the teacher and she again told me that she really enjoyed having Jonathan. He is very sweet and loving and she is going to miss him. She was an excellent role model for Jonathan and I could not be happier to have had her as my son's kindergarten teacher. The teacher did a great job teaching them positive behaviors that they will carry for many years.

In Jonathan's report card note for the 4th period, the teacher says "Jonathan has made excellent progress and successfully completed the kindergarten curriculum as defined by (local county) program of studies. Jonathan should be very proud of his accomplishments this year. I would strongly encourage you to enforce Jonathan's literacy development throughout the summer by reading and writing daily. Continued reinforcement will maintain your child's literacy skills and facilitate a smooth transition to first grade. It has been a great joy having Jonathan as a member of our classroom!".

The report card has 6 sections. They are rated between 1 (progressing) and 5 (exceeding objectives). To pass kindergarten, each area must reach level 4 (mastery of kindergarten objectives). Jonathan reached level 4 in 5 of the 6 areas. He reached level 5 in "Reading". But no surprises here since he started reading since he was 18 months. It was a very good report card.

In addition, Jonathan took a test twice this school year called DRA Word Analysis. There are 8 sections in this test. In the Fall, he scored 159 and the class average was 61. In the Spring, he scored 192 and the class average was 167. The maximum score someone could receive in this test is 193. He missed it by 1 point. The teacher was very thrilled. This continues to show that his receptive language and overall understanding has caught up. His major problem continues to be the expressive language.

On May 30, 2008, we had his revised IEP. The Special Ed teacher provided a report based on the new 2 goals already. For the written language goal (Jonathan will compose 3-5 sentences on a given topic using correct grammar over a three week period), she gave him a 3 out of 5 (which is appropriate. This goal was written less than a month ago). 3 means The student has demonstrated some progress towards achieving this goal. Her comments were "Jonathan has started to make great strides at the closing of the school year with his sentence choice and structure".

For the communication / speech goal (Jonathan will communicate with age appropriate syntax and oral communication skills in 4 out of 5 30 minute sessions) she gave him a 4 out of 5. 4 means The student is making sufficient progress toward achieving this goal within the duration of this IEP. This IEP is not even 1 month old. Her comments were "Jonathan has demonstrated growth in his ability to communicate with appropriate syntax within the classroom setting this quarter". If he continues to improve at this rate, I am sure we will need to call in for another IEP meeting when first grate starts.

All these observations are very positive and make me feel very proud of Jonathan and give me the push to continue this recovery journey. There is still lots to do. I notice things that others don't because he is my kid. For instance, he could not sit still today to watch the movie. He needs to focus more. He still lacks some social cues (e.g., when he hugs, he turns his head away. Just need to teach him the proper form. It is not sensory related any longer). And still has a bit of low muscle tone which makes him uncoordinated.

Here are some pictures of Jonathan and a very short video of the teacher giving Jonathan an award.

WHY Questions

During our second visit to Jonathan's DAN! Dr. 3 years ago, Javier asked the Dr. how would we know when to stop all the interventions, and the Dr. said that it was hard to tell, but the milestone we wanted to look for was "Why" questions. When Jonathan started to ask "Why" questions, we would be towards the end of the race.

Javier bought a Johny Walker Blue Label bottle and said that he would open it when Jonathan asked his first "why" questions (which in our mind meant recovered).

Last year, Jonathan started to ask Why questions, but something told us that these were not the right why questions. He first started to ask why if we told him he couldn't do something. Then he started to ask why if we told him he could do something. But we noticed that he never spontaneously asked why questions to satisfy curiosity. So we decided that was not the type of "why" question we were looking for and decided not to open the bottle.

This year he started asking more complex why questions, on some how questions, but these were not the true "curiosity" type questions. They were more to satisfy reasoning.

Today, on our way back home from a restaurant, he looked outside the window of the car and said "look mommy, the moon is moving". And Daddy said "no sweetie, the clouds are the ones moving". I was sitting next to him (in between the kids as my dad rode with use) and he said "but mom, how are the clouds moving?" and I said "because of the wind. The wind is making them move". And he looked outside again and said "is there wind out with the clouds?" and I said "yes honey, the wind is out with the clouds" and asked why and I said "because the wind is always outside blowing sometimes hard, sometimes soft". He kept looking out the window and said "look mommy, the moon and the clouds are following us". That was cute. I said yes. Then we turned and he and I started talking about something else and he turned outside and didn't see the moon. He started moving around looking for it and said "the moon is gone", I said "it is hiding from us. Do you know why we can't see the moon anymore?" and he said "because we turned. But when we get home, I can go outside the car and see the moon and the clouds again". Then I realized that he is starting to ask the appropriate why questions.

We are not going to open the bottle yet!

Saturday, June 7, 2008

A Fun Day with The Kids

Jonathan woke up at 6am today ready to play Nintendo Wii. Since he is only allowed to play electronics on the weekends, he dreams about Saturday mornings. In fact, he told us last night "I want to go to bed early because I want Saturday to come quickly". He tried to get both Daddy and me up but he was not very successful. We were tired. So at 7am, he went downstairs to play on his own (he did ask his Daddy first if he could). By the time I made it downstairs (8am), he was done playing with the Nintendo Wii and transitioned to the Leapster toy. I was glad to see that.

At 10:30am, the kids had their Tae Kwon Do belt ceremony. We thought it was going to be a quick ceremony, but it turned out to be over an hour. Jonathan has received 3 belts already but this is the first time that the Master does an actual ceremony. So we did not really know what to expect. We had to leave early because Daddy had to go take a test for his Master's Degree application form, and missed the end. One thing I liked very much today was that when I moved to another spot and Vanessa could not see me, she got a bit anxious and went to Jonathan to have him find me (there were tons of people). Jonathan did and brought Vanessa along with him, and told me "here mommy, Vanessa was looking for you. I am going to sit down again". He is always so worried about her and looking after her. The other thing that I liked (although it broke my heart that I couldn't do it) is that towards the end, the Master told all the kids (by belt color) to have their moms go to the front to break a piece of wood. I was in the bathroom with Vanessa and Jonathan started crying looking for me. When I came out, some Dad was with him helping him look for me. When I asked him why he was crying, he told me "because I was looking for you. You need to go break the piece of wood. All the other moms are there breaking the piece of wood." I told him that I couldn't because we had to go. He calmed down and we left. The fact that he notices that everyone else's moms are out there and I need to do it too is great. He did something similar a couple of weeks about about the umbrella.

The kids that received belts today

The Master called Jonathan's name. He quickly stood up and ran towards the front.



The Master called Vanessa's name. She was so proud of herself.






After Tae Kwon Do, Daddy went to take his test and we went to eat lunch and then to a recreation center so they could play in an indoor pool for a while. They had a blast. Actually, I really enjoyed being out there with them. It has been getting easier for me to be with both lately, but this was a total test. We went to a local Diner and spent about 45 minutes there. The kids were great, behaved very well, ate all their foods and we all played with books and stickers (and Jonathan played with the Leapster when he got bored with the other stuff). After that, we went to the pool. They were very well behaved, stayed in the kiddy area so I wouldn't have to worry sick that one could drown. It was a great afternoon. We spent 2 hours at the pool.

They discovered the world of "Shakes" and drank my entire chocolate shake


At the Pool


Vanessa is the one with a one-piece white bathing suite with color polka dots. Jonathan has a blue bathing suit with light blue vertical stripes on the side.

Wednesday, June 4, 2008

Green Our Vaccines & Orange Belt Test

Today was Jim Carey and Jenny McCarthy's "Green our Vaccines" Rally and both Javier and I attended. I have never been to a demonstration of any kind because I don't ever feel that passionate about a particular cause. But Autism and Vaccines are way to close to my heart and I couldn't ignore it.

I am glad we went. Thousands of people went. The march took almost an hour to complete from the moment people started walking from the Washington monument to the last person that entered the Capitol's ground area. It was very spectacular to be honest. And very touchy. There were a couple of moments during some of the speeches that I wept.

There was a child next to me that was severely affected and he kept holding my hands and pulling me down to him so he could see my face, and kept grabbing my purse and hand and camera. And I felt so bad for him and thanked God a thousand times for giving me the strength, energy and perseveration to bring Jonathan out of that world. So many people brought pictures of their children and big signs. We just showed up with our supportive t-shirts but didn't bring the kids or pictures or anything. We didn't really know what to expect. Next time we will be more prepared.

I am not anti-vaccine. I actually believe they are important, particularly if you travel outside the US. Vanessa has gotten all her vaccines except the MMR and flu shots. Her schedule was very different from Jonathan's and her pediatrician carries only thimerosal-free vaccines. Because Vanessa is a "gut" kid (she is severely constipated and I believe that the problem started with the Hepatitis B shot at birth), I purposely delayed the MMR. I am now going to administer it separately, giving 4 months in between them. Also, never use Tylenol before or after vaccination because Tylenol uses up glutathione. Use Motrin. I wish I had known that before too.

I am sure articles will be posted on newspapers and TV news. I hope that this is the beginning of change. Everyone has different expectations about these types of demonstrations. I have 2 goals: (1) preventive: take out bad stuff in the vaccines and educate parents about how to schedule vaccines safely; (2) insurance coverage for affected kids: we need insurances to cover for the treatments that kids need to get better. They do get better. Some more than others, but they do get better. The problem is that not everyone has the financial means necessary to pay for these interventions (from biomedical to behavioral). And therefore, make kids never get better. We need money.



This was very touching. The folks that organized the event created a flower arrangement with 150 white flowers and 1 yellow flower to represent 1 in 150. Made me cry.

A short video to show the type of energy and event we experience today. It was a very good event. Very well organized and speakers were great!

video

Tae Kwon Do Test for Orange Belt - June 3, 2008

I was reluctant to letting him take this test because I thought he was not ready. But the master told me that he was ready so I signed him up. He did great. I have not edited the video, but here are a couple of pictures. Vanessa also did her test to get her white belt and passed it with honors.

The Belt Ceremony is this coming Saturday. I'll make sure to add pictures then.

This form is actually to put the combat arm down. There are different forms.






Master congratulated Vanessa for a job well done! He is very impressed with Vanessa's skills. She actually has very good form and he keeps bringing that to my attention.

Sparring

Last week, Jonathan was given the opportunity to try sparring. As expected, he did not know exactly what to do, but I was so very proud of him for trying, keeping his eyes focused on his target (the other boy) and not feeling intimidated by the other kid. I did not film the second try-out he had, but he kicked better. You can see that in the couple of pictures below the video. Jonathan is the boy that has the 3 blue dots on his sparring vest. Before we decided to invest on this, we are going to let him try a couple more times. He came running after he was done begging me to buy the equipment, but the master told me to wait and try 2 more times before deciding.

video