Denial

A good day today, very hot day but good. Big Brother is home again, huge relief! Since it has been so hot we decided to walk the mall (Fiesta Mall Jaye) it is supposed to be up to 114 degrees here this week. As soon as you step outside the sun almost immediately starts to burn your skin. It's horrible it really is. It's bad enough that we literally have to run from the car to the mall before we bake. When we did get inside K.C. pulled me along, he remembers or route and makes sure we stay on it. We do pretty much the same stuff, look at the same stuff, go to the food court etc. Man was I in huge denial today. It was such a good trip to the mall, I nearly forgot about Autism. Forgot about Autism! We headed to the food court, Big Brother wanted to eat at Sbarros. K.C. pulled in the other direction (where he knew fries were) Oh how I should have listened! Instead, since Big Brother had just gotten home, we did what Big Brother wanted this time around. We ALL ate at Sbarros. I know K.C. can't have dairy, I know this yet I was in total denial today. Trying to reason in my mind, "he just wants pizza like every other kid!" "I''m going to let him have the darn pizza!" And so I did. He liked it, he ate half of it, man life was good! He didn't get sick so far. We walked downstairs (no elevators for K.C., when he goes down on the elevator he gasps like he loses his breath and falls to the ground) as soon as we reached Sears the barfing began. Cashier at Sears looked towards us and I asked her to have someone clean it up. I couldn't have cleaned it up if I wanted to because I had nothing with me. I just wanted to get him outside as quickly as possible because I knew the bathroom was further than outside was. Poor kid vomited three more times before we got home. Denial on my part. No more fairy tale thinking for me. No more dairy for poor K.C. I just wanted it to be a regular day for everyone. Wanted K.C. to eat whatever he wanted. Boy was I wrong!

Lunch at School

I have been taking K.C. to the elementary school in our neighborhood every day. I am trying to get him used to eating in the cafeteria with all the noise and commotion. We leave our house around 11:00 a.m. and try to beat the Summer schoolers before their classes let out at 11:30 a.m. K.C. is doing a good job of waiting in line to get his lunch, he needs help the entire time. His ABA therapist made him a "lunchtime" schedule going through each of the steps so that he'll know what to expect when we are there. Since going to the cafeteria with K.C. and getting lunch, I didn't realize how many steps there are in the whole process. Some take going to lunch for granted and never think twice about it but with an Autistic kiddo each and every step has to be made into a plan, we definitely think twice about it and sometimes more. Picking up his "drink" (choosing) then carrying drink to get "tray" and seeing the choices for lunch and making a choice, all the while remembering he has to hang on to, "drink and tray." K.C. couldn't do both so I let him hold "drink" and I carried "tray." He became preoccupied with the kids shirt in front of us and kept trying to "sniff" the kids shirt again an again, all the while I am trying to keep him focused on lunch. When I did redirect him he let out two sharp screams that scared the little girl behind us. Today corn dogs, applesauce, french fries and frozen fruit slushy type thing was what K.C. thought he'd want. We sat down and "Sit up" then I put his lunch in front of him. He has seen me open his apple juice a lot but his little hands can't get the darn thing opened. They are tough to open. Little by little the children started filtering in to the cafeteria and K.C. watched closely. 4 little girls sat near us and K.C. kept trying to touch her clothes and poke her back. I redirected him and apologized to the little girl (she didn't seem to mind at all but still..). He did eat half of his corn dog and when it appeared he was finished I helped him carry his tray and empty it into certain bins because this is a recycling school. No meltdowns and a pretty happy kiddo today, we'll keep going as much as possible each and every day.
K.C. will be in 1 st grade in August. I am wondering if I should pack his lunch? He has allergies to dairy and I am wondering if his new teacher will make sure he has nothing dairy if he does eat at school. I am worried he'll be made fun of at lunch time too. My sister says even if he does get made fun of he won't understand it. I know I should stop panicking over this but I am really worried.

Interesting News about Autism

Wed Jun 27, 9:11 AM ET



CHICAGO (AFP) - US researchers have reversed the symptoms of mental retardation and autism in mice by inhibiting an enzyme that affects the connections between brain cells, researchers said Wednesday.

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In a series of experiments on mice, the MIT investigators showed that they could undo the brain damage seen in a condition called Fragile X syndrome by inhibiting a key brain chemical called PAK.

In humans, Fragile X syndrome (FXS) is the leading cause of mental retardation and the most common genetic cause of autism -- the complex and devastating developmental disorder that is now being diagnosed in increasing numbers of children.

The study raises the intriguing possibility that the brain damage seen in children with the condition can be rolled back and identifies a specific target for potential drug therapies.

"It opens up a new avenue for drug research to treat this condition," said Susumu Tonegawa, a neuroscientist at the Massachusetts Institute of Technology in Cambridge, Massachusetts, and lead author of the paper.

MIT researchers began by creating a batch of mice that had been genetically modified to have Fragile X, a condition in which the neurons of the brain are structurally abnormal and functionally impaired compared to regular nerve cells.

These transgenic mice had many of the behavioral problems seen in kids with the condition: hyperactivity, attention deficits, repetitive behaviors and poor social skills.

The investigators then cross-bred these mice with another batch of mice that had been genetically modified to inhibit the activity of the PAK (p21-activated kinase) enzyme which is instrumental in shaping the formation of neuronal connections in the brain.

The researchers knew that when PAK was inactivated, the mice developed neurons that had short, fat dendritic spines, with a higher-than-usual capacity for relaying the electrical impulses that pass between brain cells.

In other words, the shape and function of the dendritic spines in the PAK mice was just the reverse of those seen in the brain cells of the mice with Fragile X syndrome.

The researchers gambled that the two abnormalities would cancel each other out, and that's exactly what the experiment showed.

The cross-bred mice had been genetically engineered so that the inactivation of the PAK enzyme began two weeks into the mouse's life cycle, which in human terms would be several years after birth.

Tests and autopsies showed that the PAK-blocking action restored electrical communication between neurons in the brains of the double mutant mice, correcting their behavioral abnormalities in the process.

"This is very exciting because it suggests that PAK inhibitors could be used for therapeutic purposes to reverse already established mental impairments in fragile X children," said Eric Klann, a professor at New York University's Center for Neural Science.

The study was conducted by Tonegawa and a postdoctoral student at MIT's Picower Institute for Learning and Memory and appears in this week's edition of the Proceedings of the National Academy of Sciences.
I wonder if this means that a child must have Fragile X before they could be helped? What about the children who have Autism without Fragile X?

6 years old, 4 feet tall

I measured K.C. last night very quickly as he was standing against the wall. With a quick pencil mark on the wall just above his head, he is exactly 4 feet tall. This little guy is growing up so quickly, like a little weed.
I took K.C. swimming last night minus Big Brother who is in San Mateo CA. this week, all week with his dad. K.C. had a blast all by himself, kicking his feet and drinking the water (I am doing my best to get him to stop this.) It's been triple digits here all week!
K.C. woke up very early last night, 3 a.m. in fact and hasn't been back to sleep yet and shows no signs of being tired. He laughed hysterically most of all the time he was up last night. I have no idea what he was laughing at but one thing for sure, thank God he wasn't crying! I must have been very tired last night because his laughter started to creep me out after awhile last night. He was just staring off into space, laughing and laughing.
He was one happy kiddo!

New Sign! Hooray for K.C.!

(this photo is a few months old)
For the past couple of weeks we have been working very hard at getting K.C. to learn a new sign, "yes." Yesterday it paid off! K.C.'s ABA therapist was about to leave when K.C. took off running into the kitchen to climb on top of the kitchen table. K.C.'s daddy has been picking him up and wrapping his arms around his dad's neck and giving him piggy back rides. I have been doing it too but only, and I mean only if K.C. makes an effort to sign, "yes" after I say, "do you want a ride?" When I ask him this, I take his index finger, bend down just a bit to indicate, "yes." Sort of like you would do when kids are playing "where is thumbkin? Well, back to what I was saying, his ABA therapist went into the kitchen and asked K.C., "do you want a ride?" We both waited and watched his hands intently, there it came, he did, he used all of his fingers on his left hand moved them up and down and off he went for a ride upstairs and downstairs! K.C.'s therapist thought it would be easier for him to sign "yes" in that manner. We realize it isn't exactly the proper sign for "yes" but heck we'll take it! I had no idea K.C. understood yes or no because he has never nodded yes or no or said yes or no. We will be teaching him, "no" down the road. Can you all imagine how much easier K.C.'s life will be if we can teach him to sign "yes" and "no?" There is so much going on in his head and secretly I have been dying to ask him hundreds of questions. I don't know how much he understands of what we say but it's coming little by little. The first question I want to ask him is, "K.C. do you love Mama?" When he signs "yes" it will be the very best day of my life ever cause I will know K.C. isn't so much in his own world and that he does love his Mama just can't show it yet. That will be the best day ever. Pray for it everyone!

Treading Water

I took the boys swimming today, for the very first time K.C. is treading water with his feet! He is actually using his feet to get his body from one place to another! I was so surprised I had to look twice. His little feet were doing their jobs! Our next swim day I will be taking the vest off and watching very carefully to how he responds. He's really learning fast!

Successful Trip To The Mall! So Excited For My Little Boy!

K.C. had a trip to the mall today and did great! He sat so nicely in the food court to eat his fries and walked through the mall like a little gentleman. This is the first successful trip to the mall! I am so proud of him!

Fast Food

K.C. has had the sickies for a few days. Today he is much better. He has been laying on the couch a lot the past three days. He would drink, but not eat. I've been trying to get him to eat soup or eat anything for that matter but nope, nothing doing. Last night he did get up and drink some more Gatorade (only the blue Gatorade, God forbid you place another colour before him). Since he was walking around some, I grabbed his shoes and put them on his feet and called Big Brother from his room to make a quick trip with us to Taco Bell. This Taco Bell is unique because it has a Pizza Hut inside as well. Kind of a two in one. I got a Taco Salad from the Taco Bell menu (minus the meat, beans instead of meat) and Big Brother got a Tostada and two side orders of nacho cheese. K.C. looked at the drive thru menu, I asked Big Brother what he thought K.C. was looking at. Big Brother got right next to K.C.'s head and looked, Big Brother trying to figure out where K.C.'s eyes were going. Big Brother said, "I think he's looking at the bread sticks from the Pizza Hut Menu or he could be looking at the Pizza." That made it easy because he can't have pizza due to allergies. We do buy K.C. "special pizza" we make at home. So I ordered two orders of bread sticks with Marinara. When we got home Big Brother made a beeline for the sink to wash his hands (still obsessing over germs). I rinsed K.C.'s under the water and we all sat down to take the fast food out of the containers. I kept the food away from K.C.'s hands (I never know how he'll respond to new food because sometimes he throws it) I gave Big Brother his food and he took it up to his room to watch a movie. I have been letting him take food into his room as long as he's careful because of the last head bonking food throwing incident. I took the bread sticks out and watched K.C.'s expression. He made a grunt when he seen the bread stick but as soon as I took the Marinara sauce out he grabbed for it like wild animal. I took the lid off and gave it to him straight away taking one bread stick and dipping it in to show him how it worked. He picked up the little container and stuck his tongue out licking the sauce. He liked it! I gave him a spoon that he wouldn't use, so I just let him eat it his way. He has been sick, heck I was just glad he was eating. Big Brother came downstairs and saw K.C. licking the little container and said, "ewwww it's germ infested for sure, he's eating like a savage!" Big Brother is something else, I can NEVER predict what he's going to say next. His comment did make me think, if I continue to let him eat like that when we do eat in public I am sure we will get alot of rude looks. We will work on it. Today we are staying indoors because of the heat. It's nearly 110 degrees today and tomorrow will be the same. If we do go out in the summer it always very early in the day or in the evening. Hope you are all doing well and staying cool from the summers heat :)

101 posts! How far K.C. Has Come.

This is post 101. I want to thank everyone who reads about K.C. and Big Brother. We enjoy reading about your special kiddos and I really feel we are all connected. I know I have said this before but I really wish we were all neighbours! I hope to meet (Lora and Griffin) http://griffinblaise.blogspot.com in the near future and enjoy speaking to them on the phone. Griffin is an amazing little fella, cute as ever and very articulate!
I have been taking the boys to the park in the evenings sometimes as late as 9 p.m. Due to the very warm weather (o.k. it's hot) K.C. has come a very long ways! Last Summer his motor skills were so far behind he could hardly climb onto the wobbly bridge! You should see him now! He is learning to climb, sometimes follows Big Brother around the park and enjoys the fact that there is no one at the park but him and Big Brother. To be completely honest I too like the fact that we are the only ones! K.C. seems to be communicating alot better since he's learned to tap a picture twice to show "yes." He taps once for "no."
He's been waking up alot at night. I am always hiding, shoes, forks, chairs, food etc. anything he can find to line up. I let him "line up" during the daytime for very short periods of time. It's like he MUST line up and has to do. Watch out, don't mess his lines up or your in for the biggest shit fit you've ever seen. His lines are pretty, the are very precise, long and for K.C. maybe it's artwork. His teacher says its from, "lack of imagination" but I don't believe that for a second. Alot of imagination goes in his lines, I can see it and so does K.C.
Big Brother has asked that he be home schooled in August. He has been having some issues with older children who he attends classes with calling him, "nerd and geek." Some children have even called him, "brown boy." Can you believe this? I won't go into details about his school situation because I am considering a private Jewish school for him in August. I did mention this to Big Brother and his response was, "oh God no Mom, not that!" I laughed, not at Big Brother, just his response. As a little kid my Parents sent my to a private Jewish school and once I said the same EXACT thing that Big Brother had just said. It was tough, very tough but I wouldn't change a thing, it's made me the person I am today. When I first found out I was pregnant with K.C. I wanted the same things for him as well. Being pregnant with K.C. I knew all to well that there was a "Chance, hence the name of my boy, "Chance." I prayed to God he wouldn't be like my brother Adam. At about 6 months old I knew, my Parents knew, Chance was Autistic. He never babbled, looked at us, just wanted to be left alone. Chance was a mirror imagine of my brother in so many ways.
Today he is doing very well. He's learning, he's in school and he's growing up so fast it's unbelievable! I know K.C. has a very long road ahead of him, I often wonder what he'll be doing when he's an adult. It scares me alot. We will help him every step of the way, if he is with us for the rest of his life that is the way it is. I want him to have the best life as possible, happy and healthy.

K.C. and Big Brother Swimming With Relatives!

K.C. and Big Brother had alot of company swimming today! The best part of all, K.C. did great as long as nobody looked him directly in the eye. I watched him carefully and noticed straight away when someone is near him he'll stick around alot longer if no one is looking him straight in the eyes. I asked his swimmer buddies to not look him in the eye to see what happens. Sure enough, he was more at ease and seemed happier. Big Brother had a blast with College Boy but didn't really play with the other kiddos. I think he was afraid someone was going to try to take him into the deep end.
I am kinda at a stand still with K.C.'s swimming. He has no fear of the water and I want to teach him to swim. Should I take off the vest? How do I go about teaching him to swim? Without the vest he'll walk right off into the deep end. Does anyone know which steps I should take in teaching him to swim? I'm wondering if he'll teach himself? I guess I had better do some reading into teaching Autistic kids to swim.