Mmmm- I'm not a fan of hot dogs, but the crust with this recipe is yummy. Corbin LOVED it and Brian just picked all the rice crust off of it and ate the hot dog underneath.
This recipe is from Lisa Lewis' Special Diets for Special Kids- Two. I halved the recipe shown here but should've added a bit more liquid into the batter to help it stick on better to the dogs but it still was great "kid fare".
Ingredients:
*2 Cups GF flour blend
*3/4 cup Cream of Rice
*1/4 cup sugar
*2 teaspoons salt
*3/4 Cup milk substitute
*2 egg yolks, beaten slightly
*8 hot dogs
*8 cups oil
*Wooden skewers or chopsticks
Preheat oil to 375 in a deep pan or fryer.
Combine the dry ingredients in one bowl, milk & eggs in another. Then combine all together and beat with electric mixer until you have a thick, smooth batter.
Skewer the hot dogs and dip carefully into the batter. Cover the dogs all over, let excess drip off. It works better if you dry the hot dogs off w/paper towels beforehand.
Hold the sticks and submerge each one into the oil. Turn it slowly so it's completely coated and then you can let go of the skewer (I made sure the end of the skewer sat on the edge of the pan I was using). Cook each dog for about 5 minutes (turning once or twice)- until the coating is a dark golden brown. Drain on paper towels.
Helpful notes that Lisa adds:
* The sugar can be omitted, but she (and I) thought it tastes yummy w/it.
* Cream of Rice contains only granulated rice but it is made ina plant that makes wheat products. There are health food store varsions that carry no risk of cross contamination.
* Always take care (read the label) when buying hot dogs. Kosher dogs are usually safe as are the ones in the freezer section of your health food stores- they contain no preservatives at all. Also many chicken & turkey dogs are acceptable- but READ READ READ.
Wednesday, December 31, 2008
Scrapbook: Pure Childhood Innocence
I can't be sure how old the boys were in these pictures, as I didn't date the pages (shame on me)- but I remember the day clearly. It was early summer- I'm guessing June- so that would put Brian at 2 months and Corbin at 20 months. The air was still a little chilly but you could feel the summer sun's rays beating down. We were down by the ocean near my family's home that I grew up in (sad to say, they had to move a few years later and that home isn't in our family anymore- so weird).
Corbin found a stick and had so much fun just playing with the stick, running in the tall grass, watching the ocean. I told him the story of the "mermaid's lagoon"- a little inlet in the rocks that my sisters & I named- we were positive it was magical.
Brian was a chunky monkey already- breastfeeding at all times of all days lol. He seemed to already have a personality- he laughed so much and made everyone around him laugh too. He definitely had sensory issues, at so young, though. That point I won't deny. He hated the grass, and we would try to put his bare feet on the grass and he would pull his knees right up to his chest. I have a picture from that day, not included on these layouts, of him having tummy time in the grass- it was probably the highest he had pushed him up to that point- no way did he want his big baby cheeks to be touching that grass!
My Mom took these pictures with a new camera she had just got and was experimenting around with. They were, and remain, some of my favorite pictures. I remember looking at Corbin's and just being shocked at how old he was becoming. He was like a little boy- not a baby! I also loved the innocence she had captured. His wonderment in the little things of nature. I remember looking at Brian's picture and I couldn't believe how she had captured that twinkle in his eye, that second of pure joy plastered all over his face.
Oh, and the quote I chose for Brian's page- I had no clue how close to the truth that would be when I chose it.
Tuesday, December 30, 2008
Nothing Is Ever Boring
Today I stopped and bought a couple pounds of shrimp to mix with some pasta for dinner. And so it all started. I try to involve the kids with the cooking of the meals, as they are both extremely picky, and, so I've been told, a hands-on technique should help them expand their menus- hasn't worked so far but I'll keep trying. The shrimp were a disaster. Corbin was PETRIFIED of them- it didn't help that Josh told him he was gonna put one down his shirt- yes, sometimes I feel like I have three children I'm trying to reign in. So Corbin was running around the house, screaming his head off. Brian was sitting at the table and had a little less of a reaction- a turning of his head, sticking out his tongue and saying "blech". I wanted him to touch it but I think he was convinced I was trying to get him to eat it- eyes and all. I couldn't stop laughing at the drama surrounding the little pink guys.
Finished making dinner and sat down to eat with my family. Brian immediately pushed his plate away with his "blech" response. Corbin immediately ate all the shrimp but just pushed the pasta around with his fork. I ate mine, it was heavenly. After Brian threw his shrimp on the floor and was prompted to clean them up he decided to keep trying to get down from the table to my persistance that he at least stay at the table while we ate. Suprisingly he said "banana" pretty clearly so we got a banana down and I gave him half of it. At this point we gave Corbin his half-hour time limit to eat his pasta to recieve garlic bread- Corbin thinks bread is a real treat. Brian swallowed his half of a banana in one gulp and started reaching for the next. I stopped him and told him he had to eat a 1/4 of a strand of spaghetti for another bite of banana. It took about 8 minutes to get him to do it- with me continuously repeating "FIRST this (pointing to pasta), THEN banana (pointing to banana)". We continued this process probably three more rounds before he started doing it on his own and up to eating two strands of spaghetti to each bite of banana.
I look over to Corbin's plate and it looks like he may have eaten a bite or two. I remind him of his time limit- he only had about five more minutes left. He started crying, he was sick (okay, then you need to go lie down until you feel better), that he was full (but he still thought he needed that bread), then he just started shoveling it in.
At this point I got up to crush up some melatonin to put in Brian's drink. He hasn't been sleeping again so I dug it out, hoping that tonight, I might get a full nights sleep (and here I am at 11 PM not able to sleep). I always have to put his drinks with supplements into cups with lids and straws as if he sees any particles in it he'll refuse to drink it. I grabbed a lid from applebees that has those four little triangles in the straw hole that you push down for the straw. Brian drank some and started playing with the straw. He pushed the straw down into the hole, which was promptly followed by his pointer finger. He tried to pull it out and those aforementioned triangles dug into his poor little skin. I removed the cover from the lid and tried to get it off, but everytime I pulled it it just dug into his skin more. He was crying so hard- and when my little guy cries from pain I know it's bad as he has such a high pain threshold.
Josh jumped up to get scissors to cut the lid off of his finger and Corbin started SCREAMING and CRYING REAL TEARS- the kid thought we were going to cut off his little brother's finger. We got the lid off and then continued to laugh for a good ten minutes over the ordeal. The drama that has just happened was just so over-the-top that is almost seemed surreal.
So in the end, Corbin finished his entire plate in the alloted time (in reality I think he went a couple minutes over)- I can not remember the last time he has finished a plate of pasta- and he got his garlic bread. Brian probably ate about 15 strands of spaghetti- a big feat for him. Brian's finger is intact. Oh and Brian fell asleep, on his own, in about two minutes of lying down- I'll let you know if he stays asleep all night (which is his real problem).
Finished making dinner and sat down to eat with my family. Brian immediately pushed his plate away with his "blech" response. Corbin immediately ate all the shrimp but just pushed the pasta around with his fork. I ate mine, it was heavenly. After Brian threw his shrimp on the floor and was prompted to clean them up he decided to keep trying to get down from the table to my persistance that he at least stay at the table while we ate. Suprisingly he said "banana" pretty clearly so we got a banana down and I gave him half of it. At this point we gave Corbin his half-hour time limit to eat his pasta to recieve garlic bread- Corbin thinks bread is a real treat. Brian swallowed his half of a banana in one gulp and started reaching for the next. I stopped him and told him he had to eat a 1/4 of a strand of spaghetti for another bite of banana. It took about 8 minutes to get him to do it- with me continuously repeating "FIRST this (pointing to pasta), THEN banana (pointing to banana)". We continued this process probably three more rounds before he started doing it on his own and up to eating two strands of spaghetti to each bite of banana.
I look over to Corbin's plate and it looks like he may have eaten a bite or two. I remind him of his time limit- he only had about five more minutes left. He started crying, he was sick (okay, then you need to go lie down until you feel better), that he was full (but he still thought he needed that bread), then he just started shoveling it in.
At this point I got up to crush up some melatonin to put in Brian's drink. He hasn't been sleeping again so I dug it out, hoping that tonight, I might get a full nights sleep (and here I am at 11 PM not able to sleep). I always have to put his drinks with supplements into cups with lids and straws as if he sees any particles in it he'll refuse to drink it. I grabbed a lid from applebees that has those four little triangles in the straw hole that you push down for the straw. Brian drank some and started playing with the straw. He pushed the straw down into the hole, which was promptly followed by his pointer finger. He tried to pull it out and those aforementioned triangles dug into his poor little skin. I removed the cover from the lid and tried to get it off, but everytime I pulled it it just dug into his skin more. He was crying so hard- and when my little guy cries from pain I know it's bad as he has such a high pain threshold.
Josh jumped up to get scissors to cut the lid off of his finger and Corbin started SCREAMING and CRYING REAL TEARS- the kid thought we were going to cut off his little brother's finger. We got the lid off and then continued to laugh for a good ten minutes over the ordeal. The drama that has just happened was just so over-the-top that is almost seemed surreal.
So in the end, Corbin finished his entire plate in the alloted time (in reality I think he went a couple minutes over)- I can not remember the last time he has finished a plate of pasta- and he got his garlic bread. Brian probably ate about 15 strands of spaghetti- a big feat for him. Brian's finger is intact. Oh and Brian fell asleep, on his own, in about two minutes of lying down- I'll let you know if he stays asleep all night (which is his real problem).
Cry it out and then move on...
We're in the process of obtaining a Dynavox for Brian, to get approval from our insurance, we need to have a whole slew of evaluations done. One of them was cognitive testing. I wasn't very excited about it at all as I have heard over and over again how skewed they are for our kiddos that are nonverbal. He had the testing done at his preschool with his one-on-one present and she pumped me up a bit by saying she thought he did really well. So some of my doubt left me.
Today I recieved the evaluation in the mail. The evaluator used the Stanford-Binet Intelligence Scales- Fifth Edition (SB5)- a test, I'm fairly familiar with as Corbin did it last year and did extremely well on. Well, Brian didn't so well. He was scored in every area from borderline impaired to moderately impaired. I broke down. I don't do it often, I might feel like I want to, but I hold it together for the sake of everyone.
I called my sister and just cried. Really cried. I cried for my son- that I've worked so hard for and he has worked so hard and I just will do ANYTHING fo him to help him achieve his goals and to learn to talk. I want to hear his voice and his thoughts so badly and I would give anything for that chance. I cried for the preconcieved notion his teachers will have of him next year. I cried for my little boy that may always be that "little boy" and for the days when kids might pick on him. I cried for his future- the unknown- I want him to be happy, I want him to have a "normal" life, and to be able to do all the things I take for granted.
My sister cried with me but also gave me the push to get out of the tearfest- she reminded me how far he has come, how smart WE ALL KNOW he is- no matter what some test says, she reminded me that no matter if Brian progresses on or not he will be happy because he has all of us. I got off the phone with her and felt better (though I have a huge lump in my throat while typing this).
Not only did I feel better but I felt determined- went online and am looking up some nonverbal IQ tests that I'm going to demand him to recieve. If anyone has any suggestions I would be greatly appreciative.
Today I recieved the evaluation in the mail. The evaluator used the Stanford-Binet Intelligence Scales- Fifth Edition (SB5)- a test, I'm fairly familiar with as Corbin did it last year and did extremely well on. Well, Brian didn't so well. He was scored in every area from borderline impaired to moderately impaired. I broke down. I don't do it often, I might feel like I want to, but I hold it together for the sake of everyone.
I called my sister and just cried. Really cried. I cried for my son- that I've worked so hard for and he has worked so hard and I just will do ANYTHING fo him to help him achieve his goals and to learn to talk. I want to hear his voice and his thoughts so badly and I would give anything for that chance. I cried for the preconcieved notion his teachers will have of him next year. I cried for my little boy that may always be that "little boy" and for the days when kids might pick on him. I cried for his future- the unknown- I want him to be happy, I want him to have a "normal" life, and to be able to do all the things I take for granted.
My sister cried with me but also gave me the push to get out of the tearfest- she reminded me how far he has come, how smart WE ALL KNOW he is- no matter what some test says, she reminded me that no matter if Brian progresses on or not he will be happy because he has all of us. I got off the phone with her and felt better (though I have a huge lump in my throat while typing this).
Not only did I feel better but I felt determined- went online and am looking up some nonverbal IQ tests that I'm going to demand him to recieve. If anyone has any suggestions I would be greatly appreciative.
Monday, December 29, 2008
And on to the next...
So Brian's one-on-one ABA therapist, Jen, applied for a job as a head teacher, actually in Brian's preschool classroom, and she got the job. I'm happy for her but bummed as always for Brian to have to start over with someone new. Jen is our second one-on-one in the 2 1/2 years he has been recieving one, which is a better rate than others I know. I get anxious with the whole questioning everything- will the new person be patient, kind, driven, understanding, loving, determined, openminded? And how long are we going to be without a person? Jen's last day is this Friday- so Josh & I have to juggle transporting Brian to speech in the mornings & preschool with our work schedules- we had it really good with Jen, as she transported him to those things. I get anxious wondering if the person will be a good match with our family. A one-on-one, in these preschool days, is like a member of your family. Jen spends almost as much time with Brian as I do. She works in my home. She is here with Brian when no one else is. She knows the inner workings of my home. I need to teach and preach the GF/CF diet to the new person. It's just hard, when we've become accustomed to someone and we need to start all over. And of course, it's not just me, it's Brian, too, who has to become close enough to someone to really show them the potential he has.
"oh man!"
This is Brian's new expression- and on top of being able to say it, he says it appropriately and spontaneously! It's so funny and great! He had been saying it for a while (it's a favorite phrase of Corbin's, I think that's where he picked it up from) but just sporadically and never in context until this week. He used it on Christmas when it was time to leave Harley's house and one time when a cousin took a toy from him. Today, his one-on-one said that when she took out his object labels- one of his least favorite programs- he said "ohhh, man!" It's going to be so much fun watching his personality gain so much more with funny phrases like this!
Sunday, December 28, 2008
Frustration with the Potty
Three days in a row, Brian has had NO potty accidents- and on top of that, all of his bathroom trips have been completely self-initiated- including two BMs!! Excellent news- I've been so proud of him! So excited, hoping this might be the end of our, what, it must be around 14 months now, of potty training.
Then tonight, he went upstairs when I said it was time for bed, I was a few minutes behind him as I helped Corbin clean up all his crayons and markers- came upstairs, and found him naked, lying on his bed in a puddle of his pee. So Friday, Saturday, and all of today, accident-free- only for him to pee in his bed, during two minutes of not being supervised, in the room RIGHT next door to the bathroom. He was lying there, rolling in it, laughing. Oh, and on top of everything, he removed his pajamas before doing the afore-mentioned deed.
At this point, I scolded him. In the past, I haven't really scolded for potty accidents- instead just a firm NO and having him help clean up- but I have to admit, I feel like I'm up to "there" with it- just knowing that he can do it but doesn't?
I wish I could just know what is going on in that little head of his.
Then tonight, he went upstairs when I said it was time for bed, I was a few minutes behind him as I helped Corbin clean up all his crayons and markers- came upstairs, and found him naked, lying on his bed in a puddle of his pee. So Friday, Saturday, and all of today, accident-free- only for him to pee in his bed, during two minutes of not being supervised, in the room RIGHT next door to the bathroom. He was lying there, rolling in it, laughing. Oh, and on top of everything, he removed his pajamas before doing the afore-mentioned deed.
At this point, I scolded him. In the past, I haven't really scolded for potty accidents- instead just a firm NO and having him help clean up- but I have to admit, I feel like I'm up to "there" with it- just knowing that he can do it but doesn't?
I wish I could just know what is going on in that little head of his.
Saturday, December 27, 2008
Christmas :)
Every year our Christmases become a little bit better than the last. Sure, Brian still wasn't interested in that many presents and didn't want to pose for pictures- but we have so much to be thankful for with all the small steps he has made! He stayed in the room the entire time, opened everything! (in the past we have a small pile that he gradually opens over a few days), was laughing and giggling with us, was saying words when asked to. We went to two other houses to open presents on top of our own and not one meltdown. It was a wonderful Christmas!
Oh and EVERYONE got what they wanted. Some favorites were: Brian: movies (of course), a roundhouse for his trains and lots of new trains, Corbin: binoculars, Lego Indiana Jones PS2 game, Tag Learning Pen, and a 3-in-1 table, Josh: P90X Workout system and a video game chair, and for me- well I got Guitar Hero World Tour (yes I'm a big kid lol) and Philips GoGear MP3 player!! I was so excited :)
Here are just a few of my favorite pictures from the day:
to be continued, as I'm having trouble uploading to Blogger today!
Oh and EVERYONE got what they wanted. Some favorites were: Brian: movies (of course), a roundhouse for his trains and lots of new trains, Corbin: binoculars, Lego Indiana Jones PS2 game, Tag Learning Pen, and a 3-in-1 table, Josh: P90X Workout system and a video game chair, and for me- well I got Guitar Hero World Tour (yes I'm a big kid lol) and Philips GoGear MP3 player!! I was so excited :)
Here are just a few of my favorite pictures from the day:
to be continued, as I'm having trouble uploading to Blogger today!
Saturday, December 20, 2008
Six Heart Healthy Years
Today is the sixth year anniversary of Corbin's heart surgery!
Wow, did we go through a lot when he was a baby. I certainly believed he was my miracle baby and if we ever had any more they would be a breeze- (Brian, you did hold up on that "breeze" part until your regression). I still think, to this day, he is a miracle- as all kids are- but even more so with him. To almost lose your baby, twice, is like having your heart taken from you- frozen in time- until he was well again, and only then did it start beating again.
Corbin was born on November 6, 2002- it was a LONG, HARD labor- 30 hours from my first contraction, 15 hours if you count when they got 5 minutes (or closer) apart, of constant back labor- for all you Moms who have experienced that, you know what I mean lol- when it was finally time to push I was so excited. My first push sent Corbin into distress- his heart rate plummeted to the 30s. I had no idea what was going on, what followed was almost surreal- like I wasn't really a part of it- I was ordered to stop pushing- which is nearly impossible when your body is ready. I had to wait for a doctor to arrive, as I might need a c-section. Finally I was allowed to try again and was able to get him out within the next two pushes with the help of a vaccuum and an episiotimy.
I watched the doctors take my blue little baby to the table, everything was moving so fast. He wasn't moving, there was no color, he wasn't breathing, he wasn't crying. I had NO idea what was going on. His Apgar was a one for his barely-there heartrate. They took him from the room. I didn't see him again for almost two hours. When I did see him, he was pink, he was looking around, he looked so healthy besides being in an oxygen hood and all the wires leading from his body to the monitors- we didn't get to finally hold our baby in our arms until the day after.
We were told that he either had heart or lung issues. I was so confused as we had had three ultrasounds during the pregnancy- and not a single one had shown any sort of problem. We were transferred the next day to the Barbara Bush Childrens Hospital (BBCH) where we learned he had three congenital heart defects (CHDs)- a Coarctation of the aorta (CoA- narrowing of the aorta), Ventricular septal defect (VSD- a hole between the ventricles), and a patent foramen ovale (PFO- another hole but fairly common and generally safe, but when with the others just needed to be watched).
Though we were given all these big, scary terms- we were sent home with he will need heart surgery, but not until he is bigger- and was really something we needn't worry about in the short-term- I believe we were discharged on monthly visits.
Well skip ahead just a few days when Corbin was nine days old. All day long he was incredibly fussy- I didn't know what was wrong with him, he wouldn't sleep, was so cranky- and up until then he had been such an easy baby. I didn't know if it was just me being a new mom and I had no idea what I was doing. But then I noticed he was breathing kind of fast. I counted his breaths for a minute- I can't remember the count now, but I know it was high. I drove him to the medical center on the island that I lived on at the time. Five minutes after getting there he started turning blue. Corbin went into congestive heart failure. At the first hospital we were transferred to, we almost lost him for the second time. He was in pretty much the same stage he was when he was born- blue, not responsive, not able to breathe- they intubated him and we were again transferred to BBCH.
There we found that his VSD had grown considerably- and that was what was causing all the problems. He was put on three medications, given at five different times throughout the day (and night), and I needed to start pumping my milk to add additives to it- because surgery would be soon, we needed him plump. We were discharged a few days later, this time visiting the cardioligist every week.
On December 18 was when our Dr. Reyes told us he would need surgery. I was at that appointment, alone, with Corbin (was a very regular trend in my last relationship unfortunately)- again, time stopped. I didn't know where to go after he told me the news. He let me stay in that examining room for as long as I wanted- until I thought I could drive- it was a while. Corbin's VSD had remarkably grown considerably smaller but his CoA had become very bad (and the PFO was gone! yay!)- Dr. Reyes still says he shares Corbin's case at his conferences and lectures as it was very unusual for the CHDs to behave as they did.
Corbin's surgery was scheduled for December 20. Right before Christmas. I wished for my Christmas miracle that everything would be okay. The surgeon and Dr. Reyes had decided to just fix the CoA as the VSD seemed to be closing on its own- that way they wouldn't need to do OPEN heart surgery as they could fix the aorta without opening the heart. It was a good decision, as he came through the surgery with no problems at all and the VSD a year later did close on its own. We were discharged just three days later, on the 23rd! Just in time for our first Christmas!
Corbin was such a trooper and I will always remember the first smile he gave me after his surgery. I was so happy that he still had that smile for me. That he didn't somehow blame the person that brought him to this dreaded hospital and gave him all this pain, that I could only imagine he was in, but instead I believe he was thanking me for taking care of him. When Corbin was a baby, EVERYTIME we went to the mall or a big crowded area, I would have an elderly woman stop us and tell me that Corbin had "old eyes". I'm not even kidding- this had to have happened at least fifteen times. He had an old soul. I think they were right.
Wednesday, December 17, 2008
Sensory- Integration versus The Holidays
This was in an ASM newsletter a couple years ago (written by Viki Gayhardt) and I loved reading it right before my first Christmas after the diagnosis- so much of it rang so true for Brian. I think it's nice to share with family and friends who are new to your child or still learning about autism! Hope it comes in handy!!
********************************************************************
Dear Family and Friends:
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.
Thanksgiving & Christmas is one of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise.
Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes at math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might htink I am ignoring you- I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often ahve to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat. If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people- I just have to get up and move about. Please don't hold up your meal for me- go on without me, and my parents will handle the situation the best way they know how.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky- I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don't be disappointed if Mom hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things- just please be patient with me, and understanding of how I have to cope. Mom an dDad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "self regulation," or "stimming". I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kind-a-like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me "stim" for awhile as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being over protective, or condemned for not watchimg me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow some social rules. I am a unique person- an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you'll try to view the world through my eyes!
********************************************************************
Dear Family and Friends:
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see, but which make it difficult for me to adapt to my surroundings.
Thanksgiving & Christmas is one of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise.
Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes at math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might htink I am ignoring you- I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often ahve to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat. If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people- I just have to get up and move about. Please don't hold up your meal for me- go on without me, and my parents will handle the situation the best way they know how.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky- I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don't be disappointed if Mom hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things- just please be patient with me, and understanding of how I have to cope. Mom an dDad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "self regulation," or "stimming". I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this "perseverating" which is kind-a-like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me "stim" for awhile as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents' feelings to be criticized for being over protective, or condemned for not watchimg me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it's very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow some social rules. I am a unique person- an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you'll try to view the world through my eyes!
Monday, December 15, 2008
Play- Then & Now
I think I'm going to start sharing a scrapbook page every week- not that I have done much scrapbooking lately, because I haven't. But I have tons and tons of scrapbooks done and I love to look through them (well the ones I have but that's another story).
Today's choice is "Cupboard Peekaboo".
This was a favorite past time of the boys. But this was the very first time they did it. I sat back and silently watched so I didn't interrupt. The journaling on the page reads, "Peek-a-boo! It's a favorite game of both of yours. This was the first time I caught you two playing it. I heard Brian giggling but I had no idea what was so funny until I saw Corbin's head pop out of the cupboard to surprise his little brother. You both were laughing so hard at this game you had invented and I was so happy to see you playing together!"
Brian was 7 months in this picture and Corbin had just turned two. Brian was just getting to the age where he could get around pretty fast, had his own personality, and was becoming the perfect play partner for Corbin. When I made this scrapbook page I remember being so excited they were playing together and thinking of all the possibilities they would have together in their future. What best friends they would be, their private jokes, their pretend worlds they would make together. Little did I know that years down the road, no matter how much Corbin persuaded his little brother, there wasn't going to be much of this give-and-take play they had at such a young age.
Right now I'm listening to the boys in the fort we built a little while ago- Corbin saying, "C'mon Brian- just play!" and Brian whining, playing with his cars back & forth in the entrance of the fort.
Today's choice is "Cupboard Peekaboo".
This was a favorite past time of the boys. But this was the very first time they did it. I sat back and silently watched so I didn't interrupt. The journaling on the page reads, "Peek-a-boo! It's a favorite game of both of yours. This was the first time I caught you two playing it. I heard Brian giggling but I had no idea what was so funny until I saw Corbin's head pop out of the cupboard to surprise his little brother. You both were laughing so hard at this game you had invented and I was so happy to see you playing together!"
Brian was 7 months in this picture and Corbin had just turned two. Brian was just getting to the age where he could get around pretty fast, had his own personality, and was becoming the perfect play partner for Corbin. When I made this scrapbook page I remember being so excited they were playing together and thinking of all the possibilities they would have together in their future. What best friends they would be, their private jokes, their pretend worlds they would make together. Little did I know that years down the road, no matter how much Corbin persuaded his little brother, there wasn't going to be much of this give-and-take play they had at such a young age.
Right now I'm listening to the boys in the fort we built a little while ago- Corbin saying, "C'mon Brian- just play!" and Brian whining, playing with his cars back & forth in the entrance of the fort.
Naughty or Nice?
You know how sometimes you say things to your kids and later regret it. Well a few weeks ago, I was having a bad day, just nothing seemed to be going right, I couldn't get out of my funk, and Corbin just kept talking and talking and talking and talking- there wasn't a minute of quiet. After a while I told him I just need some time to be alone, please leave me alone and go play. He went into his room and I laid on the bed and relaxed for a little while.
That night when I was putting him to bed he told me he felt sad when I did that and he thought I was acting "bad". So count this as one of those times that I really regretted what I had said earlier in the evening and it made me feel really horrible to hear him say that. I told him that sometimes Mommys can be bad too- I didn't mean to be, I was just having a hard time, but next time he thought I was being mean, just tell me.
Well on several occasions he has brought it up to me- when I don't let him get dessert because he didn't eat dinner, when he's not allowed to play Playstation because his room isn't clean- now he thinks all those times are good times to remind me that sometimes Mommy's can be bad and I'm being bad. Soooo not only do I regret what I said to him that night about leaving me alone for a bit, but I also regret what I said when we dealt with it because he loves to throw it in my face lol.
Tonight, we were listening to "Santa Claus Is Coming To Town" and Corbin says, "Mom I don't know if you'll get presents because remember that one time you told me you were bad." I turned around and said, "Corbin, give me a break, how many times have you been bad this year?" He looked like he was counting in his head and finally said, "Ummm...like 100?" I started laughing and I said, "Do you think Santa will bring you a present?" And he said, "Probably not." LOL! I did tell him I think he's been good much more than he has been bad so I think Santa will remember him.
That night when I was putting him to bed he told me he felt sad when I did that and he thought I was acting "bad". So count this as one of those times that I really regretted what I had said earlier in the evening and it made me feel really horrible to hear him say that. I told him that sometimes Mommys can be bad too- I didn't mean to be, I was just having a hard time, but next time he thought I was being mean, just tell me.
Well on several occasions he has brought it up to me- when I don't let him get dessert because he didn't eat dinner, when he's not allowed to play Playstation because his room isn't clean- now he thinks all those times are good times to remind me that sometimes Mommy's can be bad and I'm being bad. Soooo not only do I regret what I said to him that night about leaving me alone for a bit, but I also regret what I said when we dealt with it because he loves to throw it in my face lol.
Tonight, we were listening to "Santa Claus Is Coming To Town" and Corbin says, "Mom I don't know if you'll get presents because remember that one time you told me you were bad." I turned around and said, "Corbin, give me a break, how many times have you been bad this year?" He looked like he was counting in his head and finally said, "Ummm...like 100?" I started laughing and I said, "Do you think Santa will bring you a present?" And he said, "Probably not." LOL! I did tell him I think he's been good much more than he has been bad so I think Santa will remember him.
Sunday, December 14, 2008
make me wanna cry
The boys are here jumping on the bed while I'm putting together some lia sophia flyers and Corbin has been chanting on and on about Christmas- I started to block it out of my head but then I heard, "Brian's gonna talk on Christmas Day!" over and over again.
I looked over and he's holding Brian's hands jumping, smiling, chanting "Brian's gonna talk on Christmas Day!". I asked Corbin why he thought Brian was going to talk on Christmas and he said "Santa, remember Mom? In the letter?"
I told him just because we asked for something doesn't mean we will get it- and maybe Santa will get it for us but it may not be on Christmas Day. His response was "No, I asked Santa. So it will happen."
I looked over and he's holding Brian's hands jumping, smiling, chanting "Brian's gonna talk on Christmas Day!". I asked Corbin why he thought Brian was going to talk on Christmas and he said "Santa, remember Mom? In the letter?"
I told him just because we asked for something doesn't mean we will get it- and maybe Santa will get it for us but it may not be on Christmas Day. His response was "No, I asked Santa. So it will happen."
Hong Kong Phooey
Hong Kong Phooey
This was Corbin at some point this past summer....it still cracks me up and I have watched it a gazillion times.
This was Corbin at some point this past summer....it still cracks me up and I have watched it a gazillion times.
Tuesday, December 9, 2008
DTaP and Autism
Remember a few posts ago when I shared a link that said the DOD was looking into a possible link between the DTaP vaccination and autism? Well it's just been brought to my attention by the Age of Autism blog that the Vaccine Healthcare Center's Network (VHCN) actually listed autism as a possible side effect of the DTaP. After that last blog showed up a lot of people wrote to them, questioning, and all of a sudden that page became "Under Revision". Coincidence? I think not.
Check out this link for more information: DTaP Side Effect: Autism. Now You See It. Now You Don't.
Check out this link for more information: DTaP Side Effect: Autism. Now You See It. Now You Don't.
a little blip- not enough to ruin my day- but enough to bug me
I ordered a couple of Joshs presents from a certain site- can't give too many details in case he reads this lol- just two days ago. I just got an email from that site today that said all their items are 10% off just today. Ugh, how annoying is that? My order has already shipped so I can't cancel it.
Oh well, I'll be over it in ten seconds but had to share...
Oh well, I'll be over it in ten seconds but had to share...
Saturday, December 6, 2008
Getting in the spirit
I love Christmas. Everything about it. It's the best season of the year. I love the extra time with my family- love the Christmas break- love working a job that follows my children's break. I love all the extra activities- getting out and seeing people we may not make the time for in our busy schedules. I love finding that perfect present for those perfect people in my life. I love the joy on my children's face as they see Santa (maybe not so much for Brian with Santa), see the lights, see the presents under the tree. I love the magic in the air, the feeling that anything can happen. I love being able to believe in miracles.
Maybe it's that last thought right there. Believing in miracles. This time of year I love to remind myself to be thankful. Sometimes it's hard to do that. Especially when you seem to be predisposed with anxiety and depression. Sometimes I see only what has been taken from my life, from Brian. The pain, the guilt, the unanswered questions. It's nice to remember what we've been given. Corbin, myself, Josh, and everyone touched by Brian's smile and infectious laughter, has been given the gifts of knowledge, patience, compassion, acceptance, and love that surpasses all "normal" circumstances.
So take time to slow down during the busiest season of the year to really look at our lives and to remember we are blessed.
Thursday, December 4, 2008
When it comes to fighting autism, maybe we should send in the army
According to this article by David Kirby, the Department of Defense is now saying that the DTaP shot may be related to autism. I am astounded right now. I think I should be happy that this announcement is being made by a federal department but I actually feel very angry. This is the shot that I've always believed to be Brian's final pull of the trigger. It's three shots in one to begin with- usually accompanied with one or two other immunizations at the same time- so a total of four-five live viruses being put into your baby that hasn't developed a full immune system yet. When I wrote out a timeline of Brian's regression and then requested his immunization record and put the two together it showed that 2-3 weeks after his first DTap was when he first started banging his head, all the time- he just seemed so angry and upset, and he was just a little baby, it stopped eventually and things seemed to get back on track- we kind of forgot about the whole head banging time when he started walking, laughing, waving, talking, hamming it up ALL the time- loving being the center of attention. Then 2-3 weeks after his next one he slowly started slipping away again- that time, never fully coming back (yet!!!)...
I want to cry- I know if this goes public and it becomes common knowledge it is so great for all those future families and children but what about mine. What about the thousands of others that have already been diagnosed with autism, that have already slipped away from their parents, those who have mommys crying for their "lost" child every night...What about us? What about Brian?
A lot of other points made in the documents that are really common knowledge to me, to Michelle, to Ginger, to Rebecca, to all those other Moms & Dads I know and talk to- Children who have adverse reactions should avoid multiple vaccinations (fevers, not sleeping or sleeping too much, febrile seizures, just not acting themselves); patients who have neurlogical diseases should not get further vaccinations; mercury & thimersol may be linked to autism (huh? what? never!); alternative biomedical approaches may be used to address exposure to mercury........
I want to cry- I know if this goes public and it becomes common knowledge it is so great for all those future families and children but what about mine. What about the thousands of others that have already been diagnosed with autism, that have already slipped away from their parents, those who have mommys crying for their "lost" child every night...What about us? What about Brian?
A lot of other points made in the documents that are really common knowledge to me, to Michelle, to Ginger, to Rebecca, to all those other Moms & Dads I know and talk to- Children who have adverse reactions should avoid multiple vaccinations (fevers, not sleeping or sleeping too much, febrile seizures, just not acting themselves); patients who have neurlogical diseases should not get further vaccinations; mercury & thimersol may be linked to autism (huh? what? never!); alternative biomedical approaches may be used to address exposure to mercury........
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