Wednesday, December 31, 2008

Rice Dogs Recipe

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".

*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.

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).

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.

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.

More Photos- Christmas at the Grandparents

Saturday, December 27, 2008

Christmas Photos {Take Two}

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!

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!

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.

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, " 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."

Hong Kong Phooey

Hong Kong Phooey

This was Corbin at some point this past 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.

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...

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........

Friday, November 28, 2008

Dear Santa

Dear Santa-

I want a present. In it I want a superhero or a pirate or monsters. I want binoculars. Real ones can look far away. Not a toy one.

Why do you live in the NOrth Pole?

Brian likes trians and cars. He only likes that. I want Brian to talk and not have autism.

I want Transformers or Kung Fu Panda toys.

I like you Santa.

Love, Corbin

Thursday, November 27, 2008

Black Friday lia sophia Sale!

I'm having a special online-only black friday sale on my website- .

Utilize our December customer save plan and buy any two items at regular price and choose up to FOUR at 50% off!! You can choose your most expensive items to be the half-off ones!

In addition, at my private sale, you can take an additional 10% off your entire order from 5 am-midnight tomorrow! Want to host a party? Email me a date and I'll take 15% off your order!! Like that idea, but don't live near me? Think about having an "online catalog" party!

Just visit my website and put your order under the hostess name, "Heather St. Clair". Hope to "see" you there!

Finish your holiday shopping from the comfort of your own home!

Will our government listen to this?

Autism catastrophe
Published Date: 28 November 2008

...The most recent government study confirmed that the rate of autism in the UK now stands at one child in 88, with the rate for boys, who are most likely to be affected, around one in 58. Make no mistake, this is a public health catastrophe.

As a result of parental demand, Autism Treatment Trust opened a clinic in Edinburgh in 2006 and to date has arranged comprehensive testing and commenced treatments for more than 300 autistic children. The results of the tests have been striking and a remarkable pattern is emerging: gastrointestinal issues are common, particularly inflammation; food intolerances and allergies feature regularly, as do immune abnormalities and heavy metal toxicity. Many of these children are very ill. All are treatable.

The belief that autism is solely genetic in origin is unsustainable; environmental factors must be at play. You do not get genetic epidemics.

President, Autism Treatment Trust
Stafford Street

Monday, November 24, 2008

Recipes for Thanksgiving

Looking for recipes to try this Thanksgiving and wanted to share a few that I am thinking about trying:

This Pumpkin Raisin Cake sounds delicious and the picture on the page looks so moist- if you can really tell that from a picture lol.

Preheat the oven to 350 degrees F. Lightly grease a medium Bundt® cake pan.

Mix together the dry ingredients:

2/3 cup buckwheat flour
2/3 cup millet or sorghum flour
1/3 cup quinoa flour
2 tablespoons tapioca or arrowroot starch
1 scant teaspoon xanthan gum
1/2 teaspoon sea salt
1 teaspoon baking soda
2 teaspoons baking powder
1 teaspoon cinnamon
1 teaspoon McCormick Pumpkin Pie Spice- or mix ginger, nutmeg and allspice

Add in:

1/3 cup light olive oil
1/2 cup organic raw agave nectar
2 tablespoons maple syrup
2 teaspoons bourbon vanilla extract
1 14-oz can cooked pumpkin
1/4 to 1/2 cup hemp milk- or non-dairy milk- as needed
Ener-G Egg Replacer for 2 eggs- or 2 large organic happy huevos

Beat until a smooth, fluffy batter forms. Note: As mentioned above, if you are using real eggs, you may need less liquid than I did- so start with 1/4 cup non-dairy milk and see how it goes. Add a tablespoon more at a time to achieve a smooth cake batter.

Add in:

2/3 cup raisins- or dried cranberries, if you prefer

Stir to mix.

Scoop the batter into the Bundt® cake pan and spread evenly.

Bake in the center of a preheated oven for 45 to 50 minutes until the cake is firm when lightly touched. Double check with a cake tester, if you like. Note: Baking time may vary for you- I bake at over 7,000 feet.

Cool on a wire rack before inverting the cake onto a serving plate. Cool before slicing- this is a moist and tender cake.

Makes twelve slices.

I wrapped and froze ten slices for future snacking.


Cinnamon raisin bread sounds delicious! I need to make a bread substitute for Brian but he's been INCREDIBLY, even more so than normal, picky lately so maybe a sweet bread would be perfect for him!


3 eggs

1/2 cup of oil

4 oz of apple sauce (be sure it is corn-free– no citric acid)

1/2 cup of maple syrup

1/2 cup of kefir (we used goat’s milk kefir, but any kind will do– homemade or store bought)

1 tsp guar gum

1/2 tsp salt

1 tsp baking powder

1 tsp baking soda

1 Tbsp cinnamon

3 Tbsp ground flax seed, pumpkin seed, linseed mix (or just flax seeds if that is what you have)

1 cup rice flour

2 cups Pamela’s Pancake and Baking Mix

1/2 cup raisins


Mix all the wet ingredients in an electric mixer. In a separate bowl mix dry ingredients. Slowly add dry ingredients to wet ingredients until the batter is completely mixed. Beat on high for about 2 minutes. Add raisins and stir. Pour batter into two small loaf pans. Bake at 375 degrees Fahrenheit for 10 minutes and then reduce heat to 350 degrees Fahrenheit for 45 additional minutes or until a toothpick inserted into the loaf comes out clean. Let the loaf cool completely before slicing. This recipe slices beautifully in an electric slicer.


I LOVE apple crisp!! We made this super-easy recipe after we went to the apple orchard this fall- I ate it all in like two days lol. Yeah, just me. Because as I've mentioned a few times both of my children are extremely picky and Apple Crisp honestly doesn't LOOK appetizing but, oh, is it!

4 cups tart apples
2 tablespoons lemon juice
½ cup brown rice flour
½ cup Sucanat (organic sugar)
¼ cup butter
½ teaspoon salt
1 teaspoon cinnamon

Peel, core and slice the apples into a bowl, and sprinkle with lemon juice. Blend the rest of the ingredients in a bowl. Spread the apples in a bake pan, and cover with the blended ingredients. Bake for about 30 minutes or until golden.


This Marbled Pumpkin Cheesecake looks delicious! I think this is THE one recipe I KNOW I'm gonna attempt! I'm hoping to wow Josh's family with how yummy a baked GF/CF dessert can be and I'm thinking this may do it!

GFCF Marbled Pumpkin Cheesecake

2 cups crushed GFCF cookies of your choice
2 TB butter substitute, melted
½ pkg. GFCF chocolate chips

½ pkg. GFCF chocolate chips
3 (8 oz) pkg. Tofutti “better than cream cheese” softened
1 cup sugar
¼ cup light brown sugar
¼ cup cornstarch
¾ cup coconut milk
4 eggs
1 (16 oz) can pumpkin puree
¾ tsp cinnamon
1/8 tsp nutmeg

Crust: Grease 10 in. spring form pan. Preheat oven to 325. Combine cookie crumbs and melted butter in food processor. Press into bottom only of spring form pan. Top with ½ pkg. chocolate chips. Set aside.

Cheescake filling: Melt remaining chocolate chips until smooth. Set aside. In large bowl, beat Tofutti cream cheese, sugar, brown sugar until smooth. Beat in pumpkin. Beat in eggs and coconut milk until blended. Mix in by hand cornstarch, cinnamon, nutmeg. Then beat with mixer until blended.

Stir 1 cup of pumpkin/Tofutti mixture into melted GFCF chocolate chips. Mix well, set aside.

Pour remaining pumpkin mixture into spring form pan on top of chocolate chips. Spoon chocolate mixture on top of cheesecake mixture in small mounds. Swirl with a knife. Place spring form pan on a baking sheet.

Bake at 325 for 60 minutes or until filling is set (center may still jiggle a little). Turn off oven, but let cheesecake stand in oven with door open a crack for about an hour. Cool at room temperature for another hour then refrigerate.

Makes one TALL, HUGE, cheesecake. (Small slices necessary!)

Sunday, November 23, 2008

Adults with Autism

I know as Brian's parent I believe I block out thinking about what is going to happen when he is an adult with autism. I don't think about it so maybe it won't happen. Honestly, it never crossed my mind perhaps the whole first year of his diagnosis. I remember the day that I first thought about it. I was helping my Dad with his small part-time landscaping business and we were at a beautiful location- a house right on a cliff by the ocean. We were taking a break and just staring out to the horizon when Brian came up as our subject. My Dad asked me if I had started any accounts for Brian for when he was an adult and if I had thought about the choices he would have for living accomadations as an adult. I remember tears instantly formed in my eyes. I hadn't thought about it. At that point I wouldn't allow myself to believe that I couldn't get him out of his world with the biomedical approaches and intensive ABA services I had chosen for him. Sometimes I still don't allow myself that but I do realize that no matter how much I hope, pray, and work for him to lose the diagnosis it just might not happen. And reality will always be there.

What services are out there for adults with autism? Not much, right now, unfortunately. But we're going to need to change that as these 1 in 150 kids become adults- there is going to be an overwhelming need for change!

Age of Autism posted a link to this story, All Grown Up, this morning- please take the time to read it!

Saturday, November 22, 2008


I was lying in bed, trying to will myself to get up, when I heard Corbin sleepily emerge from his room and trod his way into the bathroom. Of course, immediately following, I heard Brian's door open. The boys never get up without the other! I heard Corbin urinating and then heard him say, "Haha, Brian what are you doing? Do you hvae to pee?" Brian must've been pulling his pjs off. Brian replied, "Yeah." Corbin said, "Okay Brian, come on over." I heard Brian tinkling and then Corbin said, "Do you need to pee more, Brian?" and Brian replied, "All done". Such a little thing made me smile so wide while I laid there in bed because I believe that is the first time I've heard the boys have an actual conversation together!

Thursday, November 20, 2008

1 in 28

Age of Autism has been running a lot of articles the past few days about the staggering rates of autism being found in Somali-children in Minnesota. The guess right now is 1 in 28 children. The parents say autism was very rare back in their home country yet all of a sudden all of their children are succumbing to this nightmare, that we all know so personally. The parents are definitely pointing their fingers toward vaccines as their children have been subjected to a lot more immunizations than ever before and some have been doubled up. And believe it or not, the CDC has not even visited, commented, or acknowledged this epidemic.

Some links for more facts:

* Autism Strikes 1 in 28 Somali Children in Minnesota

* Somali Gloves Come Off

* An Open Letter to the Somali Parents of Minnesota

* Our Kids Somali or American

* On Autism, Somalis Feel the Chill in Minnesota

Wednesday, November 19, 2008

I want to Sue People.

Yesterday was Corbin's share day. He decided for this week he would bring in his "Cat" book and read it to the class as he has memorized it a few weeks ago. When I was putting him to bed last night I asked him how it went. He said "Good, I told them to raise their hands when they heard a rhyme. I said Cat. Rat. But only Miss Reuter raised her hand!" I was laughing that he somehow turned his share time into a control time (he absolutely loves to be the boss) and I said, "Wow- it sounds like you would be a really good teacher when you grow up. Do you want to be a teacher?" He was quiet for a second and he said, "Yeah but I want to sue people." I looked at him in disbelief, how the heck does he know about suing people? I repeated, "Sue people?" he said, "Yeah, sue people". We probably repeated that exchange for three or four more rounds when he finally said, "Yeah, mom, you know sue people with the animals!" Oooohhhhh- ZOO people! LOL

Monday, November 17, 2008

initial thoughts

I made this scrapbook page about a month or two after Brian's initial diagnosis- at the time it was PDD-NOS, I think our first evaluator just wanted to ease us into the world- as later on we realized he was definitely "full-blown" autistic- as the next two evaluations confirmed. I love this layout though- and sometimes when I am just feeling too stressed with issues surrounding us I like to read this. And remember that he does love me even if he can't always show it. I love him so much- and always will, no matter how little or how much he progresses. That is all that matters.

Sunday, November 16, 2008

Update on Sedation

I'm sorry it's taken me sooooo long to update- I've had a few people write asking how it went, so I apologize!

So we left our house a little after five in the morning, I waited and got Brian out of bed just seconds before leaving hoping he'd sleep the hour and a half ride to the hospital but he was wide awake and just in the best mood! I thought the morning would be awful as he wasn't allowed to eat breakfast and of course the night before he fell asleep RIGHT before dinner and there was NO WAY to wake him up. He was OUT. So no breakfast and no dinner. But like I said he was just smiling from ear to ear- the whole ride- like he thought we were going on a private adventure- just Mommy & Brian.

When we arrived in the hospital he walked all the way in by himself (a big accomplishment because he thinks he needs to be carried everywhere). We went in, he waited so well while we registered, followed a volunteer who showed us to the pediatric sedation wing while thoroughly looking around everywhere, soaking in his surroundings- another BIG thing. We opened the door to the wing, he walked in ahead of me, found the nurse, looked at her and said "Hi" before she said anything to him. He seemed so big to me and wise beyond his years. Later when the nurse was putting on the numbing cream he was becoming quite antsy and I made a comment about "one of his many autistic traits" and the nurse looked at me and said "He's autistic? I would've never known the way he said hi and made eye contact with me!" It felt so good to hear her say that.

A few minutes later I think she got a clear picture of his autism. He was soon stimming out on a train in the waiting room- after just barely evading a tantrum because he couldn't find the engine to the cars and of course that was not okay. We found it- phew. He did okay with the weight & height- a little cranky about doing it but not too bad compared to other doctors' visits we've been on.
They did do the IV while he was awake. That was hard. I hold to hold him on my lap and it took three other adults as well to help do the IV. He cried but I think the tears were more from just the discomfort of being held down and the tape around the IV than the actually poking. They got it in on the first poke thankfully. Afterwards he kept pointing to it and saying "ow" or "boo boo". A little sad but oh so cute when he uses his words appropriately!

The unit was SO great there- I was able to HOLD Brian while he recieved his IV meds to be put to sleep, he fell asleep in my arms. We were in the same room for the whole routine and I was allowed to stay in the room for the entire procedure. I did leave at one point to grab a bite to eat and buy Brian an Elmo balloon from the gift shop. The procedure went well- his hearing is fine. I suspected it would be but it is nice to just know and not question it any more. He woke up fine from the procedure- devoured his apple and scrambled eggs and then decided to lounge around the bed. I kept asking if he was ready to go and he kept replying, "nooooooo". The nurses were great and said we could stay as long as we wanted but after about an hour of this, I was SO ready to go. I stopped asking and started telling.

I dressed him and got all of our stuff together- two bags, Thomas blanket, a PECS book that wouldn't fit in a bag, and the Elmo balloon. We went into the hall of the pediatric wing and he threw himself on the floor. The nurse looked at me like what is going on here? She asked if I needed help, ever the stubborn fool that I am said no and held his hand and pulled him out of the wing. About 15 steps down the hall he pried his hand out of mine and purposely ran into the wall. I haven't seen him throw himself into a wall in months & months. He came over and said "Up". I picked him up. I tried to carry him- but with all that stuff and his 38-pound body all bundled up was just too much. I couldn't do it. I put him down, squeezed him, endured a few stares from different people walking by. Thought he calmed down, grabbed his hand and walked some more. He kept screaming, crying, trying to get loose of my grip- luckily at that point we came to a lounge-area. We sat down, him on my lap, sucking his thumb, me trying to soothe him. He was quiet- I talked to him about how I needed him to walk. We made it down the stairs and out the door before the screams began again. At this point I again tried to carry him- made it into the parking garage but told him he NEEDED to walk. Of course we were parked at the opposite end of the garage because when we arrived in the morning I wasn't sure where I needed to be. If I was smart I would've moved the car while he was in the procedure but no room for thinking about "what ifs".

By the time we got to the car, I was ready to cry. I wanted to pull my hair out. I wanted to throw the towel in. Brian was still crying, I'm sure feeding off of my energy at this point as well. I buckled him in, I got in the car, and we just sat there for a while. Him sobbing and me just breathing. I got it together, gave him all his favorite things- Tings, Knuffle bear, trains, and some juice. It took him about twenty minutes into the ride home to calm down.

I haven't seen a fit of that magnitude in a while. Was it effects from the sedation? Or just a day that had no routines in it too much for him? Who knows? I wish I did.

Tuesday, November 11, 2008


Tomorrow morning Brian is being sedated for an audiological evaluation. I'm scared. I've been through sedation four times with Corbin- with his heart situation as a baby, for his broken arm, and to have a benign cyst removed from his face. He does so well with sedation- comes out of it perfectly. But this is a whole new experience for Brian- and he has two more sedated appointments coming up in the next few months- one for the dentist and one for allergy testing. I have this gut instinct that he is going to have a hard time with sedation- that he is not going to wake up from it as easily as Corbin. So that's been eating away at me especially since I'm going alone tomorrow.
Then this afternoon another aspect of tomorrow's appointment hit me. I remember from Corbin that they make him a little sleepy with a drink but he is still awake and aware when they take him to the surgery room and I have to stop at the doors- I couldn't go with him. Corbin was cool with it- I could explain to him what was happening and that I will be right there when he wakes up. What is Brian going to think?? He's going to have no idea what is going on, why they are taking him away from me, why I can't go with him...

I don't know if I'm going to be able to be strong enough to see that fear go through him. Brian and I have a very strong bond and I know he's going to react to strangers taking him somewhere without me there. I'm not looking forward to all.

Wish us luck.

Sunday, November 9, 2008

BIG- I mean HUGE- potty news!

Brian was sitting on the couch with me this morning watching Corbin & I color pictures when he started repeating "bye bye bye bye". I said "Bye bye? Where are you going silly boy? Are you going bye bye?". He said "Yah" and started running upstairs. I said "Oh do you mean you have to go potty?" (very nonchalantly said) and he said "yah" while still running up the stairs. I tiptoed behind him because I didn't want to interrupt what I was hoping was going to be a completely independent bathroom trip and watched around the corner- him lift the seat, pull down his pajamas, pee, flush, pull pants up and run back downstairs! Yes he forgot to wash his hands lol. This is HUGE! Just huge!! We've been potty-training for over a year and only one other time has he initiated and gone by himself, which was last week. Maybe we are on to something here- please oh please! I'm keeping my fingers crossed & upping the reinforcements for such trips!

Birthday #2!!

A little photo montage from Corbin's birthday party at the movie theater! We enjoyed a very funny showing of Madagascar 2- Escape to Africa! (P.S.- this was Brian's second movie that he was able to stay in the theater for the entire thing- woohoo Brian!!)

Saturday, November 8, 2008

first ever taste of cake

Bear with me, as I always get so nostalgic around my kiddo's birthdays. I was looking through photos and I found these two of Corbin having a cupcake on his first birthday. His first taste of cake or frosting or even sugar at that point.....and LOVING it!

Friday, November 7, 2008

Halloween Slideshow

It was just brought to my attention that my little goblins were featured in a slideshow at VillageSoup- so check it out :) They are Iron Man & Captain America accompanied by Josh's nephew Jacob AKA Batman. They show up when the countdown on the video reads around 1:16

Par-tay (#1) time for Corbin!

We had a great family party at my parent's house for Corbin on Thursday night. It consisted of sandwich making, a silly face cake, silly play with cousins, trying to keep a four-year-old quiet about his cousin's present (that he stumbled upon in the office), snacking, & presents which included a new winter coat, Batman Lego PS2 game, and this great "motorcycle"!

six years

How have six years gone by so quickly? sometimes it seems like a blur yet at the same time I can look back and I can freeze time and I can remember that first time you stuck your tongue out and you had that twinkle in your eye like you were the funniest baby ever born. I can remember you being taken out of my arms while I cried hysterically for your surgery at six weeks old. I can remember the way you smiled and tried to take your baby brother out of my arms at the hospital when Brian was born. I can remember the first time you did a sign- you were watching a movie and at the end of it you signed "all done" independently and puckered your lips for a kiss while I hugged you so tight for learning a sign. I can remember you hiding in the kitchen cupboards and popping out to try to scare Brian & me. I remember when you got your first bike and you would ride it up and down the driveway. I remember so many things and I want to remember them forever baby boy. You have given me so many great memories and I know so many more are to come. Happy Birthday Corbin!

Wednesday, November 5, 2008

game night

We love game nights- this was the first night we played Jenga! Corbin LOVED it- Brian wasn't really into it- well besides wanting to knock down the tower lol!

The tower was quite impressive near the end of the game. I lost, by the way. It's no fun being the only female in the house- Corbin & Josh kept scheming on how to leave me the hardest pieces.

Brian had fun after the official game, setting up the pieces like dominos to see if he could get them to turn on the DVD player. Always thinking, that one.