If you asked me even last year if we would go to a fair I would have laughed and said something like: “Yeah, right” Although I would have said the same thing about going to a Shrimp Fest, three stores in one day with the kids, a birthday party, or attempting Halloween. A lot has changed around here. One of the main reasons for us not doing those things was because we just couldn’t with Daniel. Either going would cause complete meltdowns and we would have to leave or the overstimulation afterwards would be too much for any of us. We still have the overstimulation issue, but knowing how to better help each one of us has made it worth the attempts to try new things.

Sometimes it is not fun, it can take several days for us to get back to our “normal”.

However, it is nothing like it used to be. We actually have fun going out. I am not a nervous wreck trying to stay on top of everything and everyone in an attempt to stop meltdowns, freak outs, or any possible thing that could happen. I have spent so many years on the defense that I caused a lot of stress in myself and others. I already soak in details, and have my own sensory issues, but when I try to stay on top of others sensory/social issues alongside that, it’s too much.  It is much better now because Daniel no longer runs away from us in a panic from a noise or what seems like a random thing that causes him fear. His communication and ability to articulate more clearly what is bothering him has made it so much better for him and me. I am no longer spending all of time trying to figure out what could scare him, what could make him run, what could make him panic, and then there is always the food thing.

He has stepped out a bit trying some new things.

We have been able to go to a restaurant a couple of times and we had fun, he had fun. A lot of questions, Daniel is always asking a ton of questions, but fun. In the past the only place that we went to that was pleasant was the museum. He loves the museum and would go every week if he could. I agree with him, I would like to go as well, but I need one that is a bit more exciting to go to.   Given that it is pretty much the opposite of a fair, I was not too sure how it would go. My mom mentioned going to the fair and I said: “Let’s try it”.

Next time I will plan it a bit better though.

I knew it was going to be a bit rough because my mom had a church event where she had been face painting kids for two hours. She was overloaded and not “feeling” the fair. Daniel had been not feeling well all day, but he insisted that we go. By the time we went he was feeling better so that was good, but he was anxious since he had never gone before and the only reference he had was a Clifford game. He asked if Clifford would be at the fair. My main concerns had been with him, I get frustrated with myself because when Daniel’s issues seem to be more prominent I forget about what Ariel and Joshua are going through.

We got there and it was going well, we had an adult per each child.

The first stop was the animals of course! It was already loud the second we got there though. The animals smelled so bad. We were able to see all of the animals and I talked to some cows, I got a picture of a beautiful cow who wanted me to set her free so she and I could walk around and talk some more. Then there was the pig who was SO over the event, the rooster who liked me telling him how pretty his feathers were and the chicken who was pretty upset about being in the cage next to that other chicken because she was rude. Ha ha ha Maybe I made all of that up, but I did talk to them and they seemed very happy about it. No one else talked to them. I did get some pictures, no flash!

Ariel started to get physically ill from the smell.

She started turning pale and was holding her nose. She had to go so we went off to check out the rides. All of them did very well, the wanderer ended up being Joshua, he could not hear a thing. Ariel and Joshua wanted to go on the carousel, as they stood in line Joshua started to lose color in his face and was holding his ears. Daniel did not want to go on the carousel. Joshua got worse and he could not go on the ride because the music was too loud. He had to sit out with Grammy and Daniel far away from the music. It was too loud for both Grammy and Daniel as well, but it wasn’t making them get sick like poor Joshua.

I took pictures of Ariel and David.

Ariel loved it. She wanted to do more rides. We found a dragon ride that she HAD to ride. Joshua decided to try it since it was quiet. I was concerned, but let him get on. I couldn’t recall why I was having an uneasy feeling until I looked at him sitting in the dragon with Ariel and I had a flash of what he has done on swings. He used to lose balance, have a petrified face, and would almost fall even when I was holding on to him. Panic hit me and I reminded David how Joshua can get off balance, he was on the outside of the ride. The opening was right there, what if he lost his balance and fell out? OH, GOD! Alright I stayed calm.

David told him to hold on for dear life and Joshua reassured him that he would be brave.

When it took off he had that moment of panic face, the second time around he was saying: “I am brave” over and over out loud, by the third time around he was hooting and hollering and having a blast. Daniel did not want to go on that ride either. He wanted to go on the Ferris wheel. I couldn’t let him, not this time it was too high and since we had never done anything like that he was too unpredictable. All of the rides were so fast or put the kids up in the air or were too loud. I couldn’t find one that would work. I finally found one that I thought may work. It was a boat that went back and forth and up and down. Plus I could ride with him so I offered that one.

Ariel wanted to ride as well.

Joshua was not about the boat at all and he didn’t care if it had pirates on it or not. We sat down and Daniel had his ears covered the whole time and asked me a ton of questions. The boy in front of us told us how cool the ride was. Then, it started. It was slow for like a second, but the jolts threw Ariel and Daniel off. The more it went the faster it got and I was covering both of them with my body telling them that it was ok. They both turned pale, Ariel’s eyes were bulging out of her head and Daniel was white as a ghost. I saw his little hands shaking and I yelled to the guy: “Stop the ride!” Both of them could barely walk, I had to carry Daniel and help Ariel along.

When we got down the questions started.

They both stared at the thing like it was some horrible beast that tried to destroy them. Ariel was teary-eyed and asked why she was so scared. Both of them wanted to know what happened and Daniel wanted to know why he was shaking. I explained that it threw their equilibrium off and it was just how their body was responding. I was feeling it too, but my Mommy instincts trumped my dizzy, nauseous feeling. We sat at the table for a while and Ariel bounced back quickly and wanted to go on the dragon ride because “It makes me feel like I am riding a real dragon”  Daniel did not recover so easily. He did not want to try any other rides. I explained to him that he didn’t need to be afraid that we could try again when he is older. At first he said no, but when I explained to him that not all rides are like that and maybe his body just wasn’t ready for it he was more receptive to trying again…sometime.

He has talked about it over and over again, but he is not afraid, which is a VERY good thing.

We were all overloaded. We were all over the noise, the smells, the people, the heat, and the bugs. We made it about three hours. YES! Three hours at a fair that is huge! Daniel had completely shutdown after the ride. He would not drink, his eyes were glazed over, he continued to ask questions, then got fixated on the fans in some of the buildings. He refused to leave one building that had a huge seven blade fan and vents in the ceiling that he could see. We were finally able to convince him to go and he came back to his goofy playful self after about 5 minutes in the car and two cups of water. Everyone had a lot of fun, I ate funnel cake again. Yes, I did!

Funnel Cake! (I didn’t eat the whole thing, I shared.)

Overall it was very enjoyable, it was a great adventure. It was a big accomplishment socially and sensory wise. I was so happy that the kids got to experience it. We will try again and I am sure it will be even better next year. Next year will most likely be at the fall festival in my hometown and that fair rocks! I am looking forward to having good food again, AND they have gluten-free food too! I wish someone would start making gluten-free funnel cakes at the fairs. I let the kids try some cotton candy. They were very excited about that. Ariel said that her favorite was the dragon ride and  so did Joshua, he said it was his favorite because “I felt like I was Anakin!” Daniel said that his favorite part was the animals because all the buildings had big fans.

I cannot believe we went to a county fair!  Awesome!

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Last Saturday, my mom offered to watch the kids and I took her up on the offer. I felt myself feeling emotionally exhausted and drained and I needed some time by myself. I did not hesitate or question or feel guilt about having her watch the kids. That was a big deal for me. I decided that I was going to go to the beach and read. I knew the waters would be rough and that there would be more creatures and shells on the sand from the hurricane. I like exploring when there are storms, I always see interesting things in the water or the sand.

For some reason I felt like I should stop at the Cat thrift store before the beach.

I hesitated about that for a moment, but then thought that I should listen to my gut and see what happens. There was nothing spectacular, but a few significant things to me. I walked in and went straight for one of the first bookshelves that normally has home school resources or workout DVD’s. I found nothing for school, but did find an unopened three in one Pilates DVD’s set that I have wanted since 2006. Score! I also found beginners step-by-step Tai Chi DVD and thought, “Why not?” That would be worth the $2.50 to try.

I wandered my way back to the toys.

They did not have much, but the kids have been begging for checkers and a chess set. I found a 7 in one game set for $3.50 and thought that was a good deal. I then ventured into the books and found a box set of Sherlock Holmes for $5.00. I decided to wait and see if I should get that one so I left it for the moment and said to myself ‘If I keep it under $20 then I can get it”. I found nothing else and went to the register still not sure why I was there. I felt a jolt to look at the movie DVD’s which I never really do because I always expect them to be bad movies.

I placed my items on the counter and said “Oh, wait”.

I bent down to look at the DVD’s and an unopened, perfectly new “The Big Kahuna” popped out at me. It was hidden in the midst of very lame movies and I laughed. I have wanted this movie for a long time, it has great significance to me. It is a treasure to me, but I have never purchased it. I snatched it up and smiled. Then, I thought there has to be at least one more movie I could find because it is either $3 for one or 2 for $5. I scanned the movies and “The Watchmen” jumped out at me. I have never seen this movie and I am not sure that I will, I haven’t felt right about it for some reason, but it is one of David’s favorite movies. So I grabbed that one too. The Big Kahuna is one of my favorites and he has never seen it.

The cashier rang up the items and I felt another jolt to go get the books.

I grabbed the Sherlock Holmes set and came back, my total was $19.80. She passed me two dimes on the glass counter with her two fingers and they glided toward me in a strange way. I felt as if something had just happened in that store, but I was not sure what exactly.  It all seemed like a movie. I left quite happy and be-bopped out to the car.

I went to the beach.

There were no clouds and it was very hot. I read for a while, but I started getting dizzy so I ventured to the water and the wet sand. I took pictures of the waves, they were much higher and rougher because of the hurricane. I got caught up in the crashing sounds and the foam that rushed to edge of my feet. I started digging up shells with my toes and I was so excited to find a shell perfectly intact. All the time that we have lived here I have never been able to find a shell with the spirals and complete. They are always broken or I can only find clam shells. I figured this was another broken one, but I wanted to take a picture of the spiral.

To my surprise I dug up a perfect treasure.

It was full of tiny other shells as well. There was an entire village of creatures living in this shell.  I kept it and continued to look for more. I saw some creatures that I have never seen before and I have no idea what they are. I did not bother them, I only took pictures. The last time I messed with creatures of the sea I found out that they were Conus sea snails and I was picking them up and examining them close to my face. At any moment I could have been harpooned with their tooth right in my face. I learned my lesson about how I should not touch sea creatures.

I continued to find shells of two.

Attached clam shells and rows of different types of shells. I took pictures and sat in silence. When I left it occurred to me that I had not once thought about being alone. I had not once felt anxious. I had not once felt awkward saying “hi” to people. I had not once thought about what they were thinking of me wallowing on the sand taking pictures on my elbows or digging with my toes. Or how I got face to the ground examining the contents inside some of the shells. It didn’t even occur to me to think that others were around. I danced in the water and played with the waves and I did not care. It seemed like it was right out of movie scene when the character discovers something. Possibly right after a climax or right before…before something bad happens. Oh, well no sharks and the kids were great that evening too. No worries about the next lead in to a climax, until another time.

It was a lovely day.

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Another one of my special interests which I have spoken about a bit are words. I do love words. Words are fun and fantastical. There are so many things that words do. They are playful, mean, accurate, distinctive, repulsive, magical, loving, caring, hurtful, wondrous. You can make words up. They can be gibberish. They can be truth. They are their own art form. I love them. Some of them are prickly, some of them are sharp, some of them are soft, some of them are squooshy and some of them burst in colors.

Yet I do not fully understand the way they are used.

I enjoy discovering new words and their meanings. I enjoy, the way words look to me. They can be quite playful or be triggers. Since I recently shared how one word was a trigger, the word “soon”, let me tell you what happens when they are no longer a trigger. They become a game, a pleasant joke to my memory. Now every time I see the word “soon”, I laugh. He smiles and waves and says “See you got me all wrong”. That is what words do with me. They are alive like numbers. They have colors and move and they wink and make me giggle.

I have many words that tickle my insides.

They can also hurt like daggers or fill me with unmeasurable joy. Mostly they make me happy. No words hurt for long once I figure out why they hurt, then they become my friend and useful for good. I like to write poems playing with words. Especially, when I am researching or learning something new. It helps me relate and fuse what I am learning to my mind, such as one of my recent poems titled “Stumbled”. I titled it purposefully wrong.

It is all about harmony and destiny so to speak.

As you read it, it is clear that it is all a mishap of what is seen as yin yang happening. Discovering your perfect zen by accident. I liked using the word karma because most people do not know the accurate meaning. Karma means “action” or “deed”, what I have read recently is that it is not about good or bad it is about choices. The choices we make now will affect us later in life and if you believe in rebirth, then it will affect that as well. That is a very simple way to explain it. To use it in a playful way as I did in my poem is exactly what I meant. To poke fun at how little and how much control we have over our lives. I am not sure how I feel about any of the words I used in the poem I was just playing with their definitions.

I do this often in my poems because words are playing with me.

I enjoy our playing and bantering together. I will most likely not reveal anymore of what is behind my poems or writings any longer because they no longer mean the same thing as they did last week or yesterday even. Some of them, however have been created into echoes that will live for eternity in the pleasantries of my mind. Others the hard ones will be reminders of how dark times turned to good and helped to create the lovely ones. I have found my peace with words and understanding how people use them differently than I do.

If I do not understand I will ask and that is the end of it.

You may see more of my playful word use. You have been warned. I have some pictures of my books as a child, most of them are actually mine. We did find almost the complete set that I had of the Dandelion Library, I think I still had four or five of mine from when I was a kid. The others are from when I was a child, you can see I took pretty good care of them. They are set up exactly as I had them in my room as a child and growing up.

The Mathemagic and The Magic of Words were my constant companions.

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There has been so many strange things that have been happening to me that I cannot let it go. I will not go into great details, but it seems things are just trying to tell me something. It’s possibly that my mind is more aware of certain things, who knows just go with it! After my moment of “breakthrough”, so to speak literally something unlocked in my brain. My recollection of memories and remembering parts of me has exploded. Other things that have happened have just made me stop and look around and wonder if I am in the Twilight Zone. If I start to feel a doubt about something or someone, the kids start singing a song out of the blue that I have a direct connection with the person or situation.

I asked them why they started singing it and they do not have a reason, they just felt like it.

It has happened for days not just once or twice and it will be a random child, interesting. I have had numbers pop out at me more, I had turned this part of me off as much as possible, but it seems that I cannot control it. I have math equations flooding my mind, many I do not know. I see them dancing in their full colors of glory for me to ponder.  I find this interesting because recently I wrote a poem about 11 and Lisa from Alienhippy suggested this movie for me to see An Invisible Sign. When I watched the trailer something broke open my memory and the part that I had shut down about numbers in my brain burst in my mind. I am waiting on the movie to be available at Netflix and decided to get the book first.

I started reading it today.

So far it is one of my favorites. Mona Gray is one of the most quirky, endearing and lovable characters. I relate to her quirkiness and numbers thing very much. As I began to read the words came alive in my head. There are only certain fiction writers that can do that for me, another writer that I happen to be reading right now is Nick Hornby. I am reading “Slam” which I like very much because it gives the feel of another character that I do love so, Houlden Caulfield. However, Sam Jones, the main character in Slam is much softer and gentle a character. It’s more like the feel of the books, I see parallels with Catcher in the Rye and Slam based on the feel of the characters personalities. I digress!

I was amazed at the parallels that I am seeing in my own life and the pages of this book “An Invisible Sign of My Own“.

Part of my process has been accepting myself and reviving those parts of me that I have hidden or stopped. This book seems to be confirming my new changes and is helping me to see myself through the commonalities that we share even though we are different. My mind has changed from comparing myself to others to accepting my own uniqueness as good. You know, at times I feel like such a child in a grown-up body. I feel silly with these fears and things that I share on here. I feel like this is a universal thing, though.

It seems like there are stories and tales of self discovery at all ages.

Sometimes it feels so hard to believe that others go through this too, I feel foolish. I really don’t care though, not anymore. If I am foolish so be it and I have to believe these things that I share are for a reason. I have been having a lot of connections through various means. I had slowly started on a journey opening myself up to things I stopped myself from like movies, certain music,  books, and really enjoying being outside like I used to, examining things in nature and animals. Something woke up in me. I am rambling again…

I am just going to share a ton of pictures and some wonderful quotes from the book.

Wait…let me just say the number 11 has been like a silly little friend lately and has made me giggle. I think it has been a way that my brain has been using to revive my love for numbers. I confessed that I see myself as a red 5 the other day. When I read in the book how she spent entire afternoons thinking about one number I thought it was marvelous since I have been stuck on 11. Then she said: “Take 5.” She goes on to say: ” Seems regular–five-dollar bill, five-minute break–but five is also the sum of two squares, and a prime, and pentagrams, and my sixth-grade teacher told me that the Pythagoreans thought 5 was about marriage because it was 3 (their first odd) joined with 2 (their first even).”  I love finding out history and meanings of numbers. When I hear or see something like that I go and research it.

Myths(ology) and science fascinate me and numbers are deeply in both.

Another thing I related to that I recently shared was about my “shutting down” or “stopping my feelings” the character on her tenth birthday began to quit. She just started quitting things that she enjoyed. She seemed to punish herself by withholding pleasures. Yes, I can relate very much. Part of my “quitting” things was to stop me from feeling. It would seem this character was doing something very similar.

I will leave abruptly and with a quote.

“Mix up some numbers and you get an equation for the way the wind shifts or an axiom for the movement of water, or the height of someone, or for how skin feels. You can account for softness. You can explain everything.” ~Mona Gray

I tried to make this short…I just have too many words flowing out of my hands.

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I read this post today at Floortime Lite Mama and I was intrigued to watch the TED video from Aimee Mullins. I do not have time to share my thoughts today but I really wanted to share her talk because I felt it was really great.

Aimee Mullins: The opportunity of adversity

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After watching Temple Grandin and reading this particular article and a few books, this past holiday we decided to work on turn taking and game skills. Temple shared how it helped her a lot learning turn taking and with David being SO into games, we felt that we should use the knowledge that David had gained about learning and games. He LOVES games, me not so much. It depends on the game. David is all about the strategy and I am all about reading the rules.

David likes to take hours playing games, doing role-playing games and those with deep story lines or other games like Risk.

Me, I like straight forward, tell me what to do, let’s play the game and then I feel satisfied that we finished it. I don’t care who wins. I have programmed myself not to, otherwise I get obsessive about winning. There is a whole history behind games and my dad’s side of the family that I will not go in to, but it caused me to not want to play games as an adult. Let’s just say the obsessive winning thing is genetic. Ariel is like that, if she doesn’t win, it is the end of the world. She is getting better. Joshua just loves playing, he doesn’t care if he wins or looses he just loves to play much like David.

Daniel, however, has not had a lot of interest.

He has played games off and on but it has been very hard to keep his attention most of the time. In the past few months we have seen a change in this. There were several games that we focused on to help with certain skills we felt we all needed to work on. David has done a ton of research on how games are great learning tools. He can go on for hours, days, years about board games, role-playing games, internet games, chess….whatever game, he can talk about it and share how it can be used as a learning tool. His mind automatically does this, when he sees a game, he will say that it can be used for math, reason, strategy, language, storytelling, and many other things.

I look at a game and I see rules that must be followed.

I do not share that special interest but I do learn a lot and have had my mind opened to interesting ways of teaching through David’s special interest. All of that to say he talked me into using games. He will send me game information and tell me how it may be good for school and I decide which ones I could use best for school and learning skills. It sounds like it may not be too fun but actually, I have observed the kids learning faster by adding games into our curriculum.

All of the games are learning tools without anyone feeling like it is.

I need particular games to play with the kids because I do not like role-playing games. David will play games with them like Heroscape and he modifies the game or they will make up game rules together.  I do not enjoy playing The Hobbit or Lord of the Rings, (he has all three) like they do. Daniel and I sit out and do our own thing, it seems he doesn’t much get into them either. However, sometimes he does join them. We finally chose several games that we have gotten over a course of time, while they have gone on sale over throughout the past year until now. There have been several different skills that we have been working on. They are as follows:

• Turn Taking
• Learning Make Believe/ Descriptive Story Telling
• Learning Rules/Following Them
• Winning/Losing
• Having Fun
• Communication Skills
• Social Skills
• Strategy
• Motor Skills
• Math/Reasoning
• Reading
• Completing Tasks

So far we are seeing some big improvements with all of the kids.

I am pleased with my ability to be able to do the list above as well.   Playing games has improved Daniel’s communication with Ariel and Joshua. He is starting to tell them clearly what he is thinking or wants a lot of the time, instead of using me as a mediator. I have seen this improve much more rapidly since we started focusing on doing games together. There are several things I have seen a lot of improvement on. I really like to watch them enjoy themselves as they learn. We not only use board games but interactive internet games as well. We have a huge lot of software from graphic drawing to ancient history. The internet as well has many free resources for games.

We are a multi-sensory learning family, since that comes naturally to me and the kids just absorb, it works well.

Since we started to really focus on the story telling and trying to act out our stories, Daniel has recently asked for a doctor set. He has actually been connecting with David quite a bit. David has a tackle box with his “doctor” stuff in it and Daniel asked for his own so he could “be like Daddy”. Since this was the first time he has ever asked or connected like that we got him a set.

We also got Ariel her vet kit that she has been wanting since before Christmas.

Joshua wanted Lego’s, what else is there in the world? It has proven to be a great buy, Ariel and Daniel have been playing off and on with their sets. They will lay out blankets on the floor and set up an animal hospital and people hospital. Joshua is their assistant, which means getting every stuffed animal and doll in the house, so they can be taken care of. I don’t know if this will help others but I thought I would share how games have helped us.

Here are some pictures and I will give links for people to check out if they feel like it.

Here are some reads about board game learning and a few about video game learning if you are interested.

Edutainment in School with Board Games

The Home Education

Currents in Electronic Literacy

TEEM: Computer Games in Education Summary Report

TEEM: Full Report

National Summit on Educational Games Fact Sheet

Summit on Educational Games site

And now for the game links I have pictured! I have other links of games we have that I do not have pictured as well. (I do not make any money off of these links, I just use them because they normally have good photos and descriptions.)

Star Wars Trouble

Minotarus Game

Lava Dragon

Rory’s Story Cubes

Jax Doodle Dice

Sleeping Queens This game has a very interesting story that can be read here: Sleeping Queens–Our Life in Cards

Coloretto

Think Fun Blocks All of the sets can be found on this link along with more similar games.

Pretend Play Doctor

Dalmation Vet Kit

Here are some games we have that I do not have pictured, they are either upstairs with David or in the other closet.

SET

Quirkle Cubes

Uno

Upwords This game has helped Daniel and Ariel be able to create words from other words.

Jenga They use the Jenga blocks as regular blocks as well. They get pretty creative with them.

U-Build Sorry

We have a lot more, David and I actually played a lot of games before the kids were born. (I do pretty well with limited people playing, I felt comfortable with David and was able to have fun.) I have used them for a while with trying to do therapy but it didn’t actually resonate with me until I read the article that Temple wrote and connected what David had been telling me about his research. So there you have it, I guess I will say David was right maybe I should have listened to him in the first place. :- )

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After I downloaded all the information I could think of from the autism symposium, I had thoughts about how well I did socially. I had many reasons for me to feel anxious about going. David and I decided to go together this year, but last year I went alone and that was an intense experience. It was the first time I had ever left the kids with David all day long. Of course, I trusted David, but Daniel was still using me as the sole “go to” person and David didn’t always understand what Daniel meant. This year the children were staying with my mom for more than 10 hours. We have never left the children that long. I believe the longest we have ever been away from them is about 4 hours and that has only been a handful of times.

We have always been close in the area too, this time we were going to be a bid farther.

If anything were to happen it would have taken us a while to get to them. I am not a helicopter mom, this is the reality of our life. We are limited in relationships, family, and in people who understand how to take care of the needs of our children. Anyway, I had that running through my head, plus the whole intimidation factor that I feel when I am around a bunch of people who seem as though they have more knowledge or authority than myself. The symposium is open to the public but it is largely for continual education in various fields, like ABA therapy, psychiatry, occupational therapists etc… Since I am just a renegade mom trying to help her child, I feel like I am going to be condemned by the medical community or feel inadequate to speak about what knowledge I do have.

I consume a lot of information but I never seem to feel like I “know” enough.

In order to help myself with this, I research before I go to anything like that. I try to make sure that I understand what they are talking about and write down questions that I may have ahead of time so that I will not get side tracked. I have found that if I research and write down focal points for myself, it is easier to process the information coming at me. I also go over every social situation I can think of and have a scripts running through my mind, just in case I talk to someone. I had done everything I could ahead of time to try to make it smooth in the morning but then I forgot all of the other things that I needed to do. I made breakfast, then realized that I had not packed the kids lunches and snacks, (I thought I already had done that) I needed to make a list of foods and how much Daniel could have. I had to get the kids dressed, but I needed to get ready. So I had a minny meltdown when David came downstairs and he had no idea what was going on, because I never told him what I needed help with.

I assumed that he knew what needed to be done, I forgot he cannot read my mind.

I started to have a panic attack. My heart rate went up, I started to sweat and to hyperventilate as I was running across the living room to get ready. David was telling me “it’s ok, we are not late, everything is fine”. I was also talking to myself saying “It’s ok, it’s ok, you are ok” as I kept counting to 10. Finally, I calmed down this happened twice, but with the help of David and my self-help, I was able to stop from going into full-blown panic. The drive was good and it gave me time to calm down and prepare but I was really out of it. When we got there I got lost again, last year I got lost and it put me into a full-blown panic attack and I almost went home. There is something about the complex that I cannot remember the directions, they have two signs with the same street name and I couldn’t remember the markers. I was starting to get very upset because it just doesn’t make sense for me not to remember. Why couldn’t I remember!!

We found it, we were early and it was all good.

David told me not to get upset with myself because he got confused too. I was still a bit frustrated since I had been there before but my mind was off from the anxiety. We went in and registered and then I saw my friend who coordinates the event and I had a moment of relief. She came and talked to us for a few minutes and took us into the event room. It’s huge and I was pummeled with fluorescent lights and their buzz, but I noticed the chairs. I asked her if they were new chairs and indeed they were new chairs. Last year they were light blue and they had a glare, this year they were navy blue, they seemed to stop the bouncing fluorescent lights from going all over the room. I was happy about that because last year the chairs were bothering me very much. We sat down in a good spot and people began to sit down as well. As there were people sitting down at our table, I felt this need to talk to them but I had no words. I couldn’t even say hi and no eye contact. Then a very nice lady sat down between me and one of the other women, she started a conversation with the other woman.

I was curled up in my little personal space ball, looking down studying the papers from the packet.

I curl up like that a lot in social situations because I will start to get chills and in a way I feel protected. The woman said “Hi, I am Tina, what is your name and why are you here, continual education?” Well there were a lot of questions, I kind of stared blankly for, what felt like a year. Then my mouth took over before my mind and since she asked why I was there, the flood gates opened and I couldn’t stop the words from flowing. I went into my whole  “I have anxiety” spiel, I tend to do this when I am nervous. Then I went into my autism spiel.  I do not know why I do this, but I will just download information without even realizing what I am doing. I can’t stop myself, somehow the information just comes out before I have time to think. Then I feel foolish, but I have done it so many times now that I just have to shrug my shoulders at myself. It allows me the freedom to talk. It opened up her talking about her adult daughter who is currently living at home and she is concerned about.

I shared some things that she felt was very beneficial, so I feel like I was supposed to share.

In the middle of our conversation though, I noticed the other woman who was sitting there and I had not addressed her at all. I interrupted what I was saying and said “I am sorry, I didn’t ask your name. What is your name and why are you here?” I realized that this was the wrong time only after but everyone was fine with that. She was a wonderful woman who just moved in town, she was originally from Japan. (Our prayers and thoughts go out to all of those affected by the recent disasters.) She worked with autistic children in Japan with a main emphasis on social skills. She said that they were about 3-5 years behind in working in this area with children on the autism spectrum. I was doing very well with both of the women, staring at their foreheads and blurring their eyebrows so they thought I was making eye contact. Then somehow I got David involved, I tend to do that when I no longer know what to say or I am just tired of talking.

We tag team during social events.

As he spoke another couple came in and sat down, they had kind of negative energy from the get go, but I figured that she was about 7-8 months pregnant.  I think most women are kind of cranky during that time, especially if they have to sit all day in an event that they may not be that interested in. David was sharing about how scripts help us and our children and that we try to make as many social scripts as possible to help avoid the social anxiety that I can have. Then the woman passed a note to her husband and did an eye roll at David. What was that? I don’t know but we went on and then they started to introduce the speakers. Earlier, my friend had warned me that they were doing a buffet instead of packed lunches, I panicked for a moment. I hate buffets! All I needed to know was the flow, just tell me how it will go and I will work out the other details, of keeping my distance from others, not freaking out because I do not know who or what has touched the open food, and the many hands touching the plastic utensils, I could go on but I will stop there.

Later, as we filed into the  buffet line, I noticed in the corner of my eye that the pregnant couple was behind us.

I thought that she may be starving and tired so I turned around and offered for them to go ahead, she declined but thanked me. I remember what it felt like to be pregnant and having to sit for long periods of time and also needing food. My gesture seemed to change their attitude toward us because the rest of the day she was very kind and tried to talk, but I was so overloaded by the afternoon that I wasn’t the best with my acting skills. I kept trying though. The murmur of all of those people, their smells, the food smells, the coffee smells, the microphones having different volumes, the clapping, everything was starting to take over my senses. By the third talk, the words he was saying started to sound like a foreign language and wouldn’t make any sense. The last speaker was the worst with that because she spoke very fast and I could not read her lips. BUT I still managed to be nice to people and keep very small, small talk. I was also able to retain more information than I thought I had.

I had a positive reaction from the first woman I spoke with, when I told her about my anxiety.

I shared with her and the other woman, during the beginning of our conversations “Right now I am fine, I can talk and have no problems because this is a topic that I like. My anxiety will not kick in until after we leave and it can last for days.” She had no idea that could happen. She told me “Well do not have anxiety when you leave here, everything is fine”. That actually helped a lot. I begin to have anxiety before I do something, but while I am doing it I feel fine, in fact I will think that it is going very well and I will feel good. After the certain something, my mind starts to go over every detail and repeats every word I said or what other people have said and then comes the anxiety. I am fully capable of forcing myself to go and do things, I try new things, I do not have a phobia or fear of people or trying something. It seems that I have so many “bad scripts” that I am full of anxiety, mainly it is that I do not know how to read people. Body language is new to me, I had no idea any of that was going on so I do not have scripts for that, yet.

I understand that my brain is causing anxiety, I am not wrong for having these feelings, but they do get on my nerves.

I am excited to have a very positive script from this year, since last year I gained a negative script because I had a panic attack, got lost, and I almost went home. I did manage to talk to a couple of people but I did not have anyone with me to tell me if it was positive or not. This year was much better, except I forgot to say good-bye to people. I was so overloaded that I no longer saw people, we just left and then I felt horrible for not saying good-bye. David reassured me that they would be ok, they are adults and it is fine, I still felt bad. I know that the goal is to keep trying to get more positive experiences. I know that it is not my doing that I have anxiety. I actually try to do everything I can to stop it. I try to keep myself in peace as much as possible. However, during this time I  my sister coming the next week and I was excited and anxious, which makes it harder for my anxiety to calm sooner. I had prepared for the kids to have their own form of anxiety meltdowns as well. Even though they love being with Grammy and everything went perfect the entire day, the next day was rough.

That was expected.

The kids were not used to being away from us that long, they were not sure when exactly we were coming back. The anticipation got all the brain chemicals flowing. We were all exhausted from the social exposure, we went to bed at 8pm two nights in a row. My mom was still recovering several days later because she is not used to that either. We were all off for a few days, but then the time change sent us for a loop. I forgot all about it. We were all doing well but it was a lot of change that week and a lot of anticipation. Overall it was a great day and very much worth it for everyone. We will all be better equipped the next time. I now have scripts stored to help the kids and myself. It went much better also because I was able to talk to David on the drive home and both of us were able to process the information with no interruptions.

I was excited to actually see some of my acting skills and my mirror neurons working well, I gained some positive scripts to add to my “brain files”.

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I did not realize just how much of an impact last week had on me. Even though, I knew that I was going to need some down time.  I knew that all of us were going to have a few rough days from all of the excitement. But I forgot about the time change, that has really messed us all up. I also didn’t realize I was so overwhelmed. We had some moments of serious stressful events that I will not go into but it was a bit scary for David and myself, nothing major but we were not expecting it. Everything is fine now. My sister, niece and my sister’s boyfriend/ex-husband/friend, I am not sure what to call him, is coming this Saturday and will be here for several days. I am excited but also full of anticipation. I am not worried about the time that they will be here, but I am a bit anxious about how all of us will be after they leave. I never know how the kids will respond. Especially, since they haven’t seen them in about four years and it is a whole new experience.

The stress of these things have been really hindering me.

I have been reading blogs and wanting so much to comment, I then cannot get the words out properly or I feel intimidated by other comments and feel that mine really add no value. It is so silly. I plan on going back and writing comments when my brain has settled down. I also went over another one of my posts, I haven’t posted yet, that I wrote about with my social encounters at the conference. It seemed to get my brain going and that made me even worse with my brain frenzy. There is nothing bad or negative, it just gets me thinking and analyzing. Plus I just got off the phone with my sister so I am on a “phone high” right now. Sometimes I just want to shout BLAH!!!! Ok, so I just did.

Despite my spazzy self, there are some really great things to write about.

Daniel chewed gum for the first time yesterday. He did it twice for me. Yea! Today I had the kids make up their own stories, standing in front of us and doing an improv kind of thing. The title was “My Day with a Dragon” I got that title from a book. They insisted that I go first, so I did, while I was acting out my story, Daniel jumped in with me and repeated what I was saying and did my body movements. Then Joshua created his story that had bits of my story, Daniel did bits of my story (HUGE) and then Ariel did hers with a kind of, I am a way cool story-teller, attitude.

And they were all was super cute and awesome stories.

Daniel has been getting books and spending time looking through them, today he picked out books that we have movies for and asked me to read the books than watch the movies. I said ok because he hasn’t done that before, maybe once with Wall-E but it has been so long I cannot recall. I recently discovered that he can read. He is starting to sound out words really well and I wasn’t aware he was doing that until recently. He sounded out “electricity” the other day and I was very surprised and asked David if he had taught him how to read the word, David had not. I am pretty happy that the things I have been teaching them is being absorbed. I know right away with Ariel and Joshua but with Daniel it is a bit harder because he will not always express to me that he understands. Discovering that Daniel is doing these things makes me feel encouraged with the current curriculum, teaching tools and methods that I am using for him.

I enjoy watching his excitement with doing new things and sharing what he has learned.

Today he grabbed hold of my arm and said “I got you Mommy”. He sat next to me and wrapped his arms around my legs. He was giggling and looking at me, then he said “You and me are together”. He has been asking questions like “What are you guys talking about?” He has really been watching and listening to our conversations. Also when the TV is on he has been observing the people or commercial and asking “What are they talking about?”. He is even asking this with songs and when I read books, he will ask ‘What do they mean?”  These are pretty great moments that I do not want to forget because my brain is all funky and not flowing well. I forget things when I am like this so I have to write it down. I think that is all I can remember now. I know the rest of this month is going to be full of all kinds of excitement too. I plan on implementing some of the tools for relaxation and helps with sensory/social issues to make our recovery smoother. I am hopeful and looking forward to the rest of the month. I know this may sound wrong but I am looking forward to having company come in town so all of us can work on our social skills.

I think it can be a good learning time.

(I wrote this last night, I just wanted to clarify.)

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Recently, I read a post by a woman who has a son on the autism spectrum but she is not. I like reading her perspective, but at times it is hard for me to understand her humor. She seems quite aggressive and things come across as mean to me. I know that this isn’t the case because I have been reading her for a while and that is just her personality. One of her recent posts was about friendship. She gave several types of friends and her definitions of them. I know that she was kidding quite a bit through out the post, since I have learned to understand her humor, but one thing she said in a joking manner was something like if you have to ask if we are friends, then we are probably not. For me this is not a joke, I do have to ask.

I found her post quite helpful actually.

I would post it but she would consider me one those “creepy lurkers” because I have not left a comment on her post before. My reasons for not commenting on many posts that I read comes from anxiety, I am not a “creepy lurker”. I don’t think…..   When I read her definitions, I thought ‘oh, these are good to remember” the problem is, I won’t. I am one of those people who has to ask if we are friends. I never know. I am the person who is unsure if her family really wants to talk to her. I have some sort of disconnect when it comes to relationships. Even though intellectually I understand that my family loves me, I have never felt like I belonged or that they necessarily like me. At times when I have gone long periods without talking to family members, I have assumed that they no longer love me and they no longer have a desire to have contact with me.

I am then surprised to receive a phone call or card in the mail with them telling me that they love me or miss me.

I have lost friends because of my inability to understand that we are friends. I remember one time, I had a girl from church over and we were talking and hanging out, at some point she said that I was her best friend. I knew that we talked a lot, we hung out at church and outside of church but I had no idea that we were friends, let alone best friends. I do not have  a clear definition of friendship in my mind. I know how I like to be a friend and that is by helping others. I will be there for whatever they need. If they are moving, need a ride, need help financially, cleaning their house, going to new places (for them), you name it I am pretty much there for whatever. If they let me know and I am able. I don’t expect anything from friends. In my mind, if we have emailed we are good. If I see them once in a while we are good. My main problem is not knowing where I stand with people. If you don’t like me, fine, I am good with that, just let me know. If you do like me, great, just let me know. I have anxiety about the not knowing.

I have noticed that I have kind of a detachment.

I have several friends that live in different states that I have known for years, decades and I will not contact them at all. If they call me or email me it is like we are in the exact same place as we were from the last time we had contact. In my mind they are on pause. Our interactions may be a little odd at first but they quickly jump right into the same place as well. In my mind, I left them in the same place, same time and same feelings. When I discover things about them that have changed,  I am shaken because I do not see how that could have happened. Then I will realize that 10 years have passed! After that I have to retrain my brain about the friendship. I have to go over everything because for me it is like meeting a new person. I will tell myself that we are friends, it’s ok that they have changed, I need to let things go, that was in the past, they are like a new person now, get to know them. I do the same thing with family. If I am in constant contact with the person I tend to do a lot better at understanding the relationship, but I will have clueless moments.

As I read the other blog about friendships, I felt so idiotic.

Why is it that I do not know if my family really cares about me or if I am really friends with someone? I am not beating myself up, I am seriously wondering about it. I know at times I feel disconnected to my kids, not to the point that I don’t love them or take care of them, but I will question if they even like me. Do they even want me as a mom? I will ask David and he of course tells me yes, they love me , yes they want me as a mom. I have many times asked David if he is going to leave me, not out of fear or insecurity but because I feel that disconnect and think that he feels it too. He doesn’t, it’s me and he has no intentions of leaving me. I also think I do that to prepare, since I have had people cut me off for what seemed like no reason what so ever, I learned to prepare for those things or do it myself before some one can hurt me.

My inability to read relationships has caused me to over-analyze .

I think one reason I now over-analyze relationships is because in the past I have been tricked by people pretending to be my friend or I have been in abusive relationships without understanding that I was being abused. There are only a few people in my life that I know will not reject me but still I think about those relationships and have those feelings that at any minute they are just going to stop loving me or liking me. It seems so silly to be an adult and not be able to understand what friendship is or to even question who is my friend. Or if my family really even notices if I am around or not. It is very hard to explain but when I think about family members who live far away, I feel like they don’t think about me.

I feel like I do not exist.

I do not say that in a way that is beckoning for sympathy, it is like a calm understanding and I find it ok. I am fine once I come to the conclusion that I do not exist in their world but then when they contact me I get all shaken up again with emotions. I try to understand my role. I have shared before with some of my family my feelings about this and they tell that it is not true. I believe them but there is no better way to describe it other than saying I have a disconnect. As hard as I try to believe it, feel it, understand it, I still feel a void. In the past this void has caused me to become friends with anyone and continue abusive relationships because of my lack of understanding. I am not sure if I was able to articulate all of this properly, I hope I did. I do not know if others feel this way, it would be nice to know if they do.

So if you have any understanding  or can relate to what I am talking about please comment!

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I cannot tell you how excited, nervous, anxious and completely giddy I was to go to the autism symposium. I went last year by myself (that is a whole other story that I will share, sometime) and it was a good presentation from all of the doctors, I learned a lot. This year I was excited because they were doing presentations on:

• The Genetics of Autism Spectrum Disorders by Abha Gupta, MD, PhD
• Research Update: A Quantitative Approach to Discovery of the Origins of Autism by John Constantino, MD
• Treatment of Autism Over the Life Course: Critical Components of Biopsychosocial Intervention by John Constantino, MD
• Pivotal Response Training for Children with Autism: What It Is and How To Do It by Laura Schreibman, PhD

I cannot possibly write enough about these topics or the speakers to give the symposium the justice that it deserves. I will, however, provide as many links and studies that I am able to research in the amount of time I have. There was a strong emphasis on evidence-based resources. Everything they spoke on had studies to back up their information and peer reviews.

When it was an opinion or when other researchers may not agree, it was clearly stated.

I found all of them to be humble and articulate speakers who were passionate in their field. I think that because of that it made the talks more interesting and easy for someone like myself to get very excited about what they are doing and the future of ASD studies and therapies. I want to be clear that what I am writing are my personal views and how I understood each speaker. I stated earlier that I will provide links, as much as possible for others to read, investigate and decide for themselves how they feel.

The Genetics of Autism Spectrum Disorders By Abha Gupta, MD, PhD

WOW! This topic was so incredibly fascinating and confirming. Her research is currently using the state of the art technologies. I was loudly saying things, like “Awesome! Wow! and “David, you have to write about that!”, when she was describing their research and the instruments they were using to study genetics. One of them is from RainDance Technologies. I won’t try to explain how it works because their website can do that. Another that is up and coming is the Whole-exome sequencing, but the current cost is $5000 per sequencing. Yale researches are said to be the first to have a true diagnosis from using Whole-exome sequencing.

I found this article on the PNAS journal.

The basic theme that she continued to emphasize was that there is no clear gene that can be found to be the “autism” gene. Many factors play a role in the hereditary gene pool. Though there may be several genes that have been located in different research, researchers still disagree as to whether these are legitimate “autism gene” finds. Bottom line, everyone with ASD is different and their brains process differently. However, being able to find common genes can help in the future of early intervention and possible medications that could better the quality of life for those with ASD.

With the new technologies, discovering the common genes can be a reality sooner than later.

I was very pleased with the research revealing what many of us say all the time, we are all different, though we may have some similarities. It is true you cannot box in how any of us on the autism spectrum think and feel. I have left out a lot of the gene specifics identified and how she explained that the chromosomes can have only a slight deviation and it can actually be found in a breakpoint in the strand. A lot of technical terms that I do not want to mistake so I am putting up a link to her publications here.

http://www.yale.edu/state/Publications.html

I will end with one of  her quotes:

“There is no one gene for autism, not even a few.  There are likely dozens, perhaps hundreds.”

Research Update: A Quantitative Approach to Discovery of the Origins of Autism By John Constantino, MD

Here was the outline for this talk:

• Autism is a quantitative trait (review/update)  (MUST READ! AWESOME!)
• Gender disparity in diagnosis may be an artifact of shift in general population distribution (Constantino et al., 2010)
• A large share of the totality of genetic influence (not just single specific susceptibility factors) on a given neur0developmental condition may cause other distinct neuropsychiatric conditions (Lichtenstein et al., 2010)
• Genetic influences that confer susceptibility to disease are responsible for general population variation (St. Pourcain et al., 2010); search for genetic causes may be accelerated by exploring genetic effects on joint phenotypes, or phenotypic association with specific combinations of genetic variations.
• Some neuroimaging phenotypes may relate more closely to variation in genetic susceptibility than to disease status (Scott-Van-Zeeland et al., 2010)
• Response to biological motion may constitute a fundamental component variation in the ontogeny of autism (Lin et al., Kaiser et al., 2010)

He shared that autistic traits are continuously distributed in the general population. Through the current studies that are taking place, though there needs to be more, the findings have shown that in families with children diagnosed with ASD, the siblings show ASD traits as well. What his group is trying to research is the tipping point that makes one sibling with a set of traits cross the line into diagnostic ASD while another sibling shows much fewer phenotypes associated with ASD. The severity of signs and symptoms may be different in every individual.

The scale needs to be changed, especially for girls.

The belief that boys are the ones most affected is not necessarily the case, because girls are affected and their symptoms manifest differently. The one thing that is of interest is how girls are more easily able to adapt and be able to function in society while boys have a more difficult time. If that information could be determined than it would be very beneficial to early intervention. Personally, I wanted to stand up and shout, “Some of us are great actresses!” and “Some of us can mirror!” But I didn’t think that it was appropriate.

In case you missed it in the first section here is his article on Autism is a quantitative trait .

I found it interesting that they have discovered that the proportion of uncles affected is overall 3.1%, this is for either side of the family. This is proven to be true for our families. Even though they have not been diagnosed, there are clear signs and stories from childhood that would back up a diagnosis. They have found silent carriers in the gene pool which means that both parents could be neurotypical but be a silent carrier of an ASD trait. Not only for autism but for diseases like PKU, Hypertension, Hirschsprung, Alzheimer’s, and Schizophrenia.

He was very passionate about people getting involved in research and participating in studies.

He spoke about the injustice of misdiagnosis of girls and for woman and men who are adults currently undiagnosed. I really appreciated his effort to educate us on the lack of information about girls on the spectrum and how everyone needs to do better by the girls. He spoke about his concern with the DSM-V proposal and how he and many of his colleges have written their complaints and are trying to get changes made to make it a better criteria. He feels that if the new criteria passes it will cause alarm for many misdiagnosis. That was very good to hear.

In his conclusions he had this quote:

“As we are seeing with the common psychiatric disorders of adulthood, patterns of underlying genetic liability do not map well onto current DSM catagories.” ~K. Kendler, Am J Psychiatry November, 2010

Treatment of Autism Over the Life Course: Critical Components of Biopsychosocial Intervention By John Constantino, MD

While searching for more information I found this article that I found very informative.

http://www.jfponline.com/Pages.asp?AID=7940

He discussed the M-Chat – we had filled this out previously for Daniel.

He spoke about the Early Start Denver Model. Based on this study they feel that children need to begin screening for autism between the ages of 18-24 months. They were able to achieve very good results with early intervention.

He created the Social Responsive Scale: Quantitative, he said that it is not a perfect tool but is a good resource to start with.

He spoke a bit about medications and how they can be beneficial.

Of course, the importance of weighing the risks to the benefits. I was really impressed with his view on making sure all other avenues have been addressed before going down the medication route. He shared a story about a mother who was very concerned with her sons G. I. tract and the toxins in his body, he did not dismiss the problems that can occur in the body of a person with ASD, but he did say to look at everything. It turned out one of the reasons that he was having so much trouble with aggressive behavior was that no one taught him “time-out”. Everyone had been concerned with the foods, GI problems and toxins, and always assumed that was what his problem was. He was allowed to be aggressive because they didn’t think it was his fault. He was taught some skills in control and discipline and showed tremendous improvement.

He discussed some of the medications that are used.

He explained how some have been wrongly used but that others that are used for ADHD can be very beneficial to those on the autism spectrum. I am not writing out the drugs because I do not know enough about them and feel that it would be irresponsible on my part to share that information without the proper knowledge.

He was very clear in his belief that we need more research.

He asked if anyone had heard of the IAN Project, I thought the IAN Project was common knowledge in the autism community, maybe it is but it at the symposium it turned out to be only 5% of us who had heard of it. I think the medical community should really emphasize this information with all of the families that they interact with. He also mentioned AGRE, I know some people may not be into research studies but for those who are these are great resources to check out.

Managing Sleep

We all need adequate sleep. If the person with ASD is not getting adequate sleep, all other means have been addressed, medication may be a necessity.

Ensuring Adequate Classroom Intervention 1

• Protection from predation-he emphasized how a child knowing that he is being protected from bullies can make a significant change in attitude and ability to do well in school.
• The utility of 1:1 support
• Asocial does not equal Antisocial (I say THANK YOU!)
• Observing for sensitivity to marital discord
• Attending to “non-squeaky wheels” – pay attention to those who are not making any problems but are suffering in silence.
• Recognize co-morbidities when present
• –ADHD (disproportionate hyperactivity)
• –OCD (disproportionate obsession)
• –Mood disorder (disproportionate mood fluctuation)
• –Anxiety disorder (HELLO ME)
• –Psychotic disorder

Adolescence

• Autistic Syndromes in the Context of Adolescent Development
• Advances in cognitive development (Formal Operation Thinking/Anticipating the future)
• Identify Formation (SELF) Who am I?
• Redefining “OTHER” (De-throne parents)–How do I fit in the world/universe around me?
• Defenses
• Morality (risk-taking/omnipresence)–What do I do with the knowledge that I am going to die someday?
• Meaninglessness–(creation of meaning where little exists=espousing radical causes)–What does my life mean?
• Isolation (affiliation for its own sake) –What do I do with loneliness and the idea of being alone in death?
• Choice (externalizing responsibility, defaulting on decision-making)–How do I choose from the infinite array of possibilities around me?

Ensuring Adequate Classroom Intervention 2

• Managing the dwindling of social motivation when it occurs
• Applying academic work to restricted interests
• Initiating vocational applicable
• Good psychiatric care can trump “expertise” in autism
• Supporting/Respecting identity formation
• Sense of competence
• Taking responsibility
• Unique niche (farm/internet/creative arts/performing arts)–domain of “belonging”/ being valued
• Tolerating awkward attempts to create meaning and assuage fears if being limited (in life span and sphere of influence)

Special Considerations in ASD

• Urgency of Treatment
• Crisis level Disruptive Behavior
• Window of development opportunity being lost
• Mental Age/Development Level
• Unique challenges of transition to adolescence (BW)
• Assenting Cognition in non-verbal AD subjects: Electrophysiologic options?

Harker and Conniolly Clin Neurophysiol. 2007 Nov;118(11):2479-88.

Epub 2007

• Communicative Capacity
• The extent to which communication deficits underlie problem behaviors
• The adequacy of a communication system

I found both of his talks very confirming.

He was giving us studies and information about how we have basically approached our daily life. I found it interesting that he was so passionate about helping girls and families being actively involved in the therapy on a consistent, continual, and inclusive basis. I felt that information he gave was clear and informative and that there was an emphasis on helping people at any age on the autism spectrum but that we can see better results the earlier we react. Of course this is not for every case but it is worth trying.

Pivotal Response Training for Children with Autism: What It Is and How To Do It By Laura Schreibman, PhD

This talk was the most gratifying and confirming to me. The approach that she has been working on is extremely similar to what I do at home. It has proven to be the most beneficial for Daniel. The only difference is that I do not segregate. I have not felt like one-on-one time is the best approach for Daniel. That is one of the reasons why when we would come home from therapy I would take everything we learned and do it with all three of the children. I am not saying that I am better than a professional AT ALL! I am saying that I did/do what seemed natural for our family and surprisingly it was incredibly consistent with her research, for the most part.

I am not allowed to share the information from the packet given, it states that it is for the program only so I will share her work and anything else I can find.

So what is Pivotal Response Training?

Pivotal Response Training (PRT) is a naturalistic, behavioral intervention approach developed by Drs. Robert L. Koegel & Laura Schreibman.

You can read Pivotal Response Training Theory by clicking on it.

Side note: I found this article that she wrote that I thought was good. The Science and Fiction of Autism

She went over ABA therapy, starting with the original form of ABA therapy.

She did say that it was not the best approach but that it was a start. Since I cannot duplicate her information and now my brain is processing a lot I will provide this link to share the brief history and different approaches of ABA Therapy. Applied Behavior Analysis (ABA) If you find that background distracting, this is a good link also, What is Applied Behavior Analysis? Unfortunately, her talk was cut short and she was really unable to go over everything she had planned.  A lot of her presentation involved do and don’t video’s. Again an emphasis on research and more naturalistic approaches.

Overall I thought the symposium was awesome.

I learned a lot and got excited about the research being conducted and where it is heading. For those of us who feared girls will not get their recognition that they deserve and help that they need, I see hope. These speakers are some of the frontiers in the autism research and they are speaking out and getting their message across. What I liked hearing as well is how they saw how each of their own research interconnected and how this can be a huge benefit for the future of autism and many other neurological issues. If all of the medical fields start that line of communication, then we will start seeing huge improvement in many areas.

I gained so much confidence that we are indeed doing the right thing for our family.

Other families may benefit from variety means of therapy and medications and I think that it is great that with genetics research we may be able to help those needs sooner. We definitely have considered and have not ruled out genetic testing but we have no insurance and even most insurance carriers will not cover it at this time. BUT look to the future! In the mean time, what we can rest in is that autism definitely has genetic components, that may or may not be enhanced by environmental factors. It varies for every person.We can be confident that the more people who become aware and participate with research we will find more answers and have clear data to prove the quantitative traits.

Early intervention and most of naturalistic involvement has huge benefits.

The more that the family is participating, turning their home into an environment of therapy as well as schools/teachers and medical influences all working together, the better the quality of life is for those on the autism spectrum. It sounds like a fairy tale, it’s all nice if only it could happen. I know, but I do think the future looks hopeful and that we will see changes in the medical community involving more family involvement and family education. My heart is to see more parents equipped to help their children at home and in their community, so when I hear about those kinds of things I get excited. My take away, hope, better understanding and enthusiasm.

I give props to all of the speakers, they were great and their enthusiasm was contagious.

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