Session Twelve 6-29-09

~weekend~ Over the weekend we made some interesting and mostly positive observations. His language is improving every day, we hear more words from him and some new sentences. Lot’s of requesting like. “I want up” to be picked up and,“ I want hug”, “I want tickles”, “I want drink” “I want eat”. He had learned the “I want ____. “ sentence structure a while ago at his ABA based early intervention program, but was rarely using it and not without prompting or PECS. Now he’s saying- sometimes shouting- his wants to us spontaneously and everyday! He has been pairing words like never before, like “let go!”, “wait for me”, and “stop it!”. He has been more tolerant of my singing to him and joined in a little bit on a few circle time songs we practiced over the weekend. His father notes a change in comprehension as well, he’s been able to ask Sevyn to go get his shoes and Sevyn came back with shoes! His Dad has also been seeing potty time and diaper changing getting easier with less resistance(hitting and kicking).Sevyn has even laid down on his own to have his diaper changed a few times recently! Sevyn has yet to use the toilet, but sits on it everyday. On Sunday he went into the bathroom and was undressing himself so his dad thought he wanted to use the toilet, but he actually was getting ready for a bath! When placed on the toilet he said "no bath time!". He got his shirt and pants off and was working on the diaper and shoes! So he’s starting to help undress and dress himself and seems more interested in potty time. The not so awesome things we saw over the weekend were these increases in obsession over foods and television. Sevyn has been asking us for everything he cannot have, he wants juice all day long, asks for stuff he hasn’t had in long time like cheese, bread, ice cream, and candy. We have been making lots of changes and being stricter about GFCF and trying to reduce sugar as much as possible. Now he is craving all of the things he cannot have and throwing huge tantrums. Juice and fruit are only served once a day and this is very upsetting to him. He’s not happy about being served water all of the time now. We have to be so careful about him getting any gluten and that’s very hard when his little brother still eats it and wants to share with him. We would like to go GFCF as a family, but haven’t quite figured that out yet. There have been no infractions so far that we know of and we’re trying to keep it that way, much to Sevyn’s disappointment. He’ll get used to it though, it just takes time to adjust. He has also been very obsessive over sponge bob, the CARS movie and wanting to watch the television all the time. We limit TV time and always have, yet he seems to think if he screams enough that will change. we encourage him to play outside a lot and that helps with this sometimes. I'll take him for a walk around our block or make some art with him to distract him. His diapers looked great though! We know the diet is working for him! He had two formed bowel movements on Saturday and one on Sunday- both were normal and without that septic tank smell! His pee still has a very strong ammonia smell and we have been pushing more water, but he has no rash and no diarrhea! He has been sleeping really well, we are so grateful to get some rest! He woke up twice on Saturday and once on Sunday and only for drinks on water. He slept 6 hours total on Saturday and 7 total on Sunday. It was a good weekend for lots of sunshine and floor time play!

Session 12 of HBOT with Sevyn

(diagnosis autism age 3)

6-29-09

We had another afternoon session today and it was fairly easy going. Sevyn seemed very awake today and well rested. He was really excited to get in the chamber again after the break over the weekend. He let me put the mask on him right away, but refused to put it up over his mouth. I tried talking into it as if it were a walkie talkie, but he wasn’t interested and I settled for him wearing it around his neck. This dive was really great as far as getting to full compression. Dr. Matt’s assistant showed me that I can pull on Sevyn’s earlobes a bit during compression and that helps him pop his ears. He tells me “that tickles!” when I do it. It a really good way to make sure his ears are popping and he likes it. At full compression we laid down together and watched a Word World DVD called rocket to the moon. He like it a lot and we talked about our rocket and how we were going to the moon. This series is really neat because all of the characters are letters too so we learned about the alphabet in the chamber today. His focus was awesome, he was very interested and I was very proud of him! He let me take a few pictures of him and got excited when his little brother was pushed up to the small observation window to visit saying "there he is!" At the end of the hour he tolerated the DVD ending and was cooperative about sitting up to depressurize. He ate his fruit leather happily- the only time he get’s these is to pop his ears in the chamber because they are high in sugar. Right before the chamber was opened Sevyn began to sing "good bye rocket". I tried my best to film it but my camera kept dying. Despite my need for fresh batteries I did manage to film a few seconds of him singing. He said “We did it!” again today when being lifted out of the chamber by Dr. Matt. On the drive home he talked about the rocket this time and had several new words in his story from the DVD we watched like “moon”, “frog”, “build it”, ”letters” and “comet”! His little brother wrestled with him and he responded in an appropriate playful way. I filmed them rolling around and laughing with each other for at least 20 minutes! It’s so awesome to see them so happy together. After about 20 minutes Sevyn got a little to excited and rough with his brother though and we had to separate them, but before that they did great. At dinner Sevyn ate most of his veggies and all of his Quinoa, and after that he brushed his own teeth! He didn’t poop today but the greens he ate will help with that. HBOT and GFCF may not be what's best for every kid, but it's what Sevyn needs right now. All the hard work is paying off! Even if he never made an inch of progress from who he is today, I couldn't be prouder of how far he has come.

Session Eleven 6-26-09

Session 11 of HBOT with Sevyn

(diagnosis autism age 3)

6-26-09

Today we fallowed yet another Olympic athlete in the hyperbaric chamber! Very cool! Sevyn jumped right into the chamber, but was really wanting to talk into the PSI meter like it was a microphone and I struggled a little bit with getting him to sit down so we could zip up and start compression. After yesterdays very promising Play Study with Marisa and my own successful skill time session with Sevyn, I decided to try going without the DVD player today. We sat at the observation window at the end of the chamber together and calmly sang and toned through the compression. We took it a little slow and he did really well. He’s been drinking water from a pop top sports bottle and that helps with popping his ears along with eating fruit leathers and singing. Dr. Matt’s assistant guided us through compression nicely today and came back to check on us regularly while Dr. Matt saw his patients. Shortly after we reached full compression Sevyn was telling me a story about space and I decided to try to film him since he was being so articulate. Well he snatched my camera right out of my hands. He’s never really cared about it before and I take lots of pictures of him. It seemed to me like he had just noticed it for the first time. He preceded to take photographs of me and the entire chamber for the rest of the hour! He was very focused and I was even able to get involved. I asked him to take a picture of me and he did! I posed by his feet and he took the picture when I smiled but not when I was frowning! I asked him to take a picture of my hand while holding it next to my foot and he carefully photographed my hand. Then I asked him to take a picture of himself and he photographed his foot and said "foot" then his knee and said "knee". Next he took some shots of the zipper and the pressure valve and said “not a choice” to me when we looked at the pics together!! I was in awe! He also photographed the windows in the chamber and was disappointed when he noticed that the stars had fallen from the side of the chamber saying “stars broken” and "all gone"with a sad face. Such amazing observations! He didn’t ask about Sponge Bob once throughout the session and was completely engaged and attentive to the activity of taking pictures with the camera and examining them. He labeled his hair, eyes, ears, nose, mouth , teeth , and shirt for me using a photograph he took of himself!!!! He also said his name several times when I asked him who the boy in the pictures was! "Seben!" When we came home today Sevyn was quite calm. He helped me water the plants outside and even helped make dinner. He’s very interested in what I’m up to these days and comes up to me often to “check in” like never before. He’ll say “hey mom” and just give me a big hug! Oh, and today his father and I were folding laundry and he came into the room and said “babee Grey -TV!” in an urgent voice. Sure enough Grey had climbed our entertainment center and was messing with the TV! Sevyn told on his brother! He observed something that he knew was bad happening and came and let the adults know about it!! We are so proud of him!!! His diapers are looking better today. More formed poop and more of it, a little mucus and runny parts, but we started him back on the Slippery Elm and that should help. His sleeping was quite broken last night, but overall is definitely improving. Everyone benefits from him resting!

Session Ten 6-25-09

Session 10 of HBOT with Sevyn
(diagnosis autism age 3)
6-25-09
Today a wonderful teacher from Sevyn’s early intervention program stopped by. Marisa worked with Sevyn in the toddler program when he was first diagnosed at 27 months old and also worked with him recently as a substitute in his current classroom. She is doing a play study with the university and wanted to include us. We love this teacher and have done a project with her before that was a lot of fun and helped Sevyn learn. I love the concepts of this study and the idea of teaching him how to play. I’m also very happy about it because we are video taping the sessions. It’s just more data on Sevyn’s progress! So today’s session with Marisa was really impressive! Despite her skepticism regarding autism recovery, she said that Sevyn’s attending skills had obviously improved quite a lot since last time she saw him and that he seemed much more focused. She also noted how he was more comfortable in his skin and that he was making eye contact much more. He used some of his new language skills with her and showed us some very interesting play behaviors. The study is described as “Least Prompts and Contingent Imitation to Increase the Frequency and Diversity of Play and Language Behaviors” and today’s session was all about observing Sevyn at play with different sets of objects- the same sets will be used throughout the study. Marisa uses the study’s theory of Contingent Imitation ( Adult contingent imitation has been used successfully to obtain the attention of children with disabilities. Contingent imitation is when the adult simultaneously imitates the child’s motor action with the same or similar object. The object sets will have duplicates of objects to facilitate contingent imitation. Contingent imitation will be used to obtain the child’s attention. Contingent imitation can last several seconds. The teacher should use contingent imitation to build a play interaction and to determine which play behaviors is appropriate to model and prompt.) at this stage and it seems to be quite effective and entertaining for Sevyn. I sat and watched them play, noting how engaged he was with her, how focused, present and attentive he was almost the entire time…it was just beautiful! He did a lot of stacking, throwing, scattering, and rolling on the different playsets. He really doesn't know how to play. The skills from this study should help him learn to socialize better! It is fascinating for me to see a teacher simply sit on the floor and imitate/play with him like this. It's so different from the model of interaction used at his school. We were filming Sevyn playing with each set of toys for five minutes so Marisa can take data from the footage later on. For me this footage is great evidence of his progress! When Marisa completes the study I'll post a video with the clips from the sessions!

The HBOT session today was at 4:50 because of the study and the busy chamber! Apparently some of the worlds greatest Olympic athletes were in town and needed HBOT too! One of those athletes was a famous, Silver and Gold Medal winning Olympian! He was using the hyperbaric chamber for an injury he sustained while practicing. I thought it was really cool that we were sharing that healing space with such talented people! I’ll tell Sevyn when he’s older for sure! Today was nice, relaxing and pretty calm in the chamber. Going in was fine, Sevyn jumped right in and was really good during the compression. He is getting better and better about popping his ears and listening to me when I try to help him through the compression and decompression. Sevyn wore the oxygen mask like a necklace again and was happy to watch a cartoon. Instead of his usual zombie like state while watching a cartoon (prior to starting HBOT), he told me all about it. I heard a lot of words and names of characters in his story from the cartoon. I love being able to understand more of what he’s telling me. He was very focused today, no compulsive checking of the windows in the chamber or moving from one end to the other. He did look at the stars outside the window and spontaneously say "earth"! He left the knobs, valves, and zippers alone and was easy to manage. We were able to stay put the whole time. When the session was finished he popped out of the chamber and shouted “we did it!” again! At home he ate well today and did about 25 minutes of ABA skill time with me and read through a short dinosaur counting book. He pointed and counted from 1 to 10 with me on several pages! His focus and attentiveness is improving everyday! He seems constipated so we’ve been pushing the greens and lots of water with him, today’s diapers consisted of some really bad smelling pee and pebbles of poop. No rash though and hopefully we can get him back to going regularly at least once a day if not twice! A great primer on stool can be found in this article Dr. Matt gave me a link to http://timestranscript.canadaeast.com/lifetimes/article/659326This was our 10th session! We are so happy that we haven’t seen any staring spells or seizure like activity since starting the HBOT! His co ordination seems improved too-his dad was just noticing how he has not seen him falling down or tripping over his own feet much at all lately! We have been seeing so much more of his face because he's actually making eye contact with us! He seems much more comfortable too! No light or noise sensitivities that we can tell, other than demanding to listen to music! He is doing so much better over all, and so am I for having done the sessions with him! Everyone in our house is sleeping better, eating healthier, and living happier now and this is only session 10!

Session Nine 6-24-09

Session 9 of HBOT with Sevyn

(diagnosis autism age 3)

6-24-09

Today’s session was in the morning at 10:45. Sevyn was pretty calm when we came in and he jumped right into the chamber again. I hid the DVD player during compression and we talked about the stars again. He was really sweet to me and gave me a big hug. As soon as we reached full compression I told him “first mask then sponge bob” and he let me put the mask around his neck. At the same time I got the DVD player out and turned on his cartoon. He wore the mask as necklace the whole time!! It was great. I could tell the oxygen was getting to his nose and mouth and he was tolerating it! I tried moving the mask up onto his face several times, but no luck. I was just pleased he had it close to his face! I struggled with turning off the DVD player at the end of the session today, but he got over it and with time and patience he’ll get used to me turning it off when we decompress. He said “ we did it” again today when the zippers opened! I love it! After HBOT we went swimming at the pool with a Cranio Sacral therapist Sevyn worked with throughout 2008. She was really amazed by how calm and focused Sevyn was and how healthy looking he is these days! No poop at all today and he seems a little bloated. Skill time was really good today though! We got through all of our colors, shapes, and started to work on letters before he started yelling “all done”! After a break and a snack we came back and got through half the alphabet. I had him sit in a chair from school with buckles (like he would at school) for some circle time songs to work on attending and learning some of the hand gestures. He did alright with this and sang most of the song “Wheels on the bus” with me while doing about 1/4 of the gestures! Improvement YAY!

Session Eight 6-23-09

Session 8 of HBOT with Sevyn
(diagnosis autism age 3)
6-23-09

Last night Sevyn slept for four hours, woke crying for a drink, then slept for another three! He only woke up once! YAY! We had another afternoon session today at 2 and Sevyn was very excited. He wanted to watch cartoons right away, so I tried to put in a different DVD, but he insisted on Sponge Bob. I also wanted him to where the oxygen mask, so I tried the “first and then” method and put the bask around his neck, then when he tried to take it off I quickly offered the DVD player saying “first mask, then Sponge bob.” He had a meltdown over the mask being on his face, but I settled for it being around his neck and knowing the oxygen was blowing into his face. I put my mask on like that too and told him it was a necklace. He wore his “necklace” for about 10 minutes then pulled it off. I turned off the DVD player, he screamed, I said first and then, and he let me put it back on him! He wore it for another 15 minutes or so. I guess Sponge Bob is our reinforcer after all! I turned off the DVD at the end of the session when we decompressed and after he got over the DVD player being gone he was much more focused and did the toning and ear popping techniques with me. We’re figuring this out! Sevyn counted to ten when the zippers opened and said “we did it!” again today! After the HBOT Dr. Matt and were talking in his office and Sevyn jumped up onto his massage table and laid down. He seemed like he wanted to be adjusted so Dr. Matt adjusted him! Sevyn asked for “more” and “again”, he also smiled gratefully at me the whole time he was being worked on! It was so cool to see him asking for help! The adjustments looked like they felt great and Dr. Matt was very gentle with Sevyn. I hope we see more of this! On the ride home he seemed to be telling his dad about the rocket. We heard words like, “rocket, stars, earth, bob-bob, squid ward, and mom! several times. I was a little teary hearing him tell a story with me in it. We still only understand a few words, but he’s talking and it’s getting clearer every time we hear it! His diaper’s (there were two poopies) looked improved but not fully formed today. We’re giving him probiotics and acidophilus. He ate really well today and seems to be taking to foods he absolutely refused before like Quinoa and beans. I am so proud of my little guy!

Session Seven 6-22-09

~weekend~ The father’s day weekend was fun. Sevyn did lots of verbalizing and singing with us. We also practiced “walk with me” without holding hands in the drive way and he did good for about 8 feet! He still bolted at the end, but his attending skills are really improving! We saw some diarrhea on Saturday and a little more on Sunday so we’re adding more fiber and greens to his plate and offering them more often. He is doing good on the stricter diet. He’s clearly upset about not getting multiple servings of fruit everyday, but he thoroughly enjoys the one serving he does get now, he‘ll say “mmmmmm yummy bluburries!!” He also shared some fruit with his brother on Saturday and his Dad and I were so impressed! He walked up to Grey and put them in his hand! They have been working on giving hugs and sharing for a while now, but when it’s spontaneous my heart just melts! Oh, and we also noticed some of the sign language he used to use coming back lately. He signed “thank you” and “more“ to me several times over the weekend as well as the “I want“ gestures with the spoken words. He asked about the rocket (that’s what we call the hyperbaric chamber) a few times in the car over the weekend and told us “ I wan rocket!“ so we tried to talk about it and show him some books about rockets and space to reinforce the chamber. He is very interested in outer space, the stars and the sky. He enjoys being in the rocket and his time with mommy. In the future as his comprehension improves I want to teach him about space and the planets while we’re in there and really go on a rocket adventure in our imaginations!

Session 7 of HBOT with Sevyn
(diagnosis autism age 3)
6-22-09
Today’s appointment was highly anticipated by Sevyn! He was so excited to visit the rocket! We got in at 2:30 in the afternoon and Sevyn jumped right in the chamber! He thinks the PSI gage is a microphone and kept trying to talk into it! I filmed the chamber filling with air and us popping our ears as the pressure increased. Sevyn was genuinely happy to be in the rocket and when he checked the windows today he saw images of outer space! I made some space art to go around the rocket and Sevyn likes it a lot. We watched sponge bob and talked about sponge bob for the rest of the session. Sevyn was fairly calm and the chamber stayed cool which is so nice. I would really like to start weaning him off the cartoons and I tried to turn them off towards the end of today’s session, but wasn’t successful…and by that I mean he screamed until I gave it back to him. I want to get him to where his oxygen mask as well and that also makes him scream. I have been putting the mask on at home and trying to get him to where it. In the chamber I have been moving it closer and closer everyday. We’ll keep working on both though! At the end of this session he was totally ignoring me because he was so tuned into Sponge Bob and when we decompress I need him to pay attention to me and work with me to pop his ears, so from here on I want to try my best to turn off the DVD player when we prepare to leave the chamber. Sevyn had another runny bowel movement, seems to be getting better though. We have been trying to use more cloth diapers with him to help with the rash, and for the five days that he had formed poop it was awesome, but with the not so formed stuff it‘s harder. Less fruit more veggies! We’re still working on potty training. Sevyn has been sitting on the toilet since September of last year and has yet to even pee. The cloth diapers help because he sees his poop go in the toilet and flushes it. Hopefully he’ll start to make the connection soon. I took him for a stroll today around our block and just listened to him talk. He was babbling and saying a lot of “digga digga”, but there were also lots of clear words and expression in there too! My son has stories to tell and I’m starting to understand more and more of what’s on his mind!

Session Six 6-19-09

Session 6
(diagnosis autism age 3)
6-19-09
This morning we had an early HBOT session in hopes Sevyn would sleep in the chamber. Well, despite having kept him up very late he was pretty hyper by the time we got there. Just one of those days I guess. He kept spitting and flapping his arms in a spastic way that told me something was off for him. We had to take it easy going into full compression because he was holding his ears and not listening to me when I tried to guide him through the toning to open his mouth. He also didn’t want to eat anything to help pop his ears. It took longer to get to 4.2 PSI and thus more time in the chamber. Sevyn wanted to move from one end of the camber to the other and check all the windows, zippers and knobs over and over rather then lay down with mommy and watch Sponge Bob or Word World. All the activity makes us both quite hot in the chamber, so I really try to encourage him to relax and be calm. At one point the did get mad about not being aloud to touch the inner zipper of the chamber (the kids can never touch the zipper) and he hit me in the face and pulled my hair in a fit of rage. This was the first angry display I have seen in the chamber and he calmed down quickly when he saw Dr. Matt checking in with a stuffed animal overhead. Despite some behaviors we still did the full hour long session and Sevyn was seated and playing with me towards the end. I actually wanted to stay in the chamber once he calmed down and just cuddle like we did the day before, like he finally got to that relaxed state and it was time to decompress and get out. Sevyn did fine during the decompression and is naturally popping his ears now. When he doesn’t do it I ask him “show me your tongue” or “show me your teeth” to get him to open wide and say ahhhh. When the zipper opened Sevyn jumped upright and shouted, “We did it!” It was the very first time we had heard those words from him! Completely spontaneous and purposeful! Not and echo but his own thought! It was so cool! Dr. Matt and I applauded Sevyn and gave him big hugs! * I should note that I was very stressed out on this day. Thinking it over, some of Sevyn behaviors may have been from my stress and him feeling that energy. I had a family member pass away and had been crying and sad. I feel like Sevyn was reacting to me and not the therapy or a dietary infraction. When we got home Sevyn was calm and asked to "go outside" until we let him out to play in the back yard. He came inside later and ate some toasted brown rice bread for the first time after being offered it for months! He also ate half of my salad and a bunch of veggies I had no idea he’d even try! We are putting all kinds of new veggies in front of him lately and he’s just now starting to try them. He’s been eating more raw foods and Prana Enzyme Bars (these are great and 75%raw, vegan, GFCF, and organic) yes they have sugar, but much less than the fruit and sugary GFCF cookies he was having for snacks. He was eating way too much fruit! He did some ABA with me today. We worked with PECS and did some fine motor and floor time. He refused the flash cards again screaming "stop it" and trying to scatter the cards. Before we went to bed he sat and read about half a book with me. No poop today. He went 5 days in a row though and that’s amazing!

opps this video is from day five...but you get the idea!