Oh, dear, I'm in Big Trouble!

Bryce had us all laughing tonight.  It's Jared's birthday tomorrow, so we had the family over tonight for a little party.  Baby Abe (cousin) was asleep in our bedroom.  I completely forgot about that fact when I told Bryce he could go play on the iPod.  A few minutes later I went down the hall and I heard Abe fussing.  I went to get Jamie, and as I did, Bryce came bolting out of the room saying, "Oh, dear, I'm in big trouble!"  He had gone in, turned on the light and grabbed the iPod when he realized there was a baby on the bed who was now awake and crying.  He dropped the iPod on the floor and left it there.  The look on his face as he realized what he'd done was hilarious.  Jamie came to the rescue and Bryce was still muttering under his breath as he went down the hall, "I'm in big trouble, I'm in big trouble."  I guess he remembers how upset I would get with him when he would barge into the room when Henry was sleeping.  This was an honest mistake, no worries :)

Cousin Abe

Also, today when we were driving home from school, Henry wanted to listen the song, "The Animal Fair."  We must have at least ten children's CD's in the van, and I had no idea which one that song was on.  But I figured Bryce would know!  I asked him, and he said, "Children's Songs Disc 2."  Then I asked him if he knew which track it was. (I knew he did- you can ask him what number any song is on any CD and he'll tell you after only listening to it once)  He replied after a brief pause, "Number 17."  Sure enough, he was right on the button.  Thank you, my living Table of Contents!  We joked that I should have him memorize all my phone contacts in case I ever lost them.  Who needs an address book when you have Bryce? 

Bryce's Valentine Compliments

I know, this post will seem like bragging on my son, and I guess it may just be that. :) I posted on my Pinterest blog about the great idea of doing Valentine's Day compliments for a class.  Click here to read that post.  I was so excited to get Bryce's when he came home because I couldn't wait to see what other kids thought about my son.  It's not like he comes home and tells me who is nice to him, or if someone has been mean.  He's largely clueless when it comes to social nuances.  So this was a peek into his daily life at school.  

You are smart.  You are a very good problem solver.  You always smile; your smile is always bright.  You're kind.  You are funny because you have a silly laugh.  You are kind to everyone; you are very helpful.  You are very kind because you never say bad things about people.  You are kind.  You are smart.  I like how you read.  You are fun.  You are smart; you are nice to Mrs. Linda.  I like playing with you.  You're cool.  You can answer so many questions; you are very nice.  You are a very hard worker, you never give up.  You are an amazing kid, you are that because you are smart.  You are really smart; you are a good friend.  You are very nice.  I think you are a very good soccer player; I like playing soccer with you.  

I had to laugh at the "nice to Mrs. Linda" comment.  He'd better be! He has no idea how good he has it!  :) Jared just groaned when he read "you are a very good soccer player" since he hates soccer.  I don't know if any other moms read their kids valentines, but I sure did!  I'm glad to hear my child is kind to others and smart to boot! 

Lessons from The Princess Bride

This was so good, I just had to reblog it.  Also, I didn't want to lose it somewhere :)

From Snagglebox.com Autism Resources

17 Things The Princess Bride Taught Me About Autism Parenting

Never interrupt me while I'm climbing the Cliffs of Insanity

1.  Affection doesn’t have to mean saying I love you

Reading a story to someone who’s sick in bed, saying “as you wish” or playing rhyming games that annoy your boss... there are many more ways to show love than just those three little words.

2.  Optimism can get you through the fire swamp

Just because you haven’t tackled a problem before doesn’t mean there’s no solution, even for POUS’s (Problems of Unusual Size).

3.  Having a target will help you stay focused

You don’t have the energy or resources to tackle every challenge that’s in front of you. Find your six-fingered man - prioritize your goals, work out which of those you can tackle and then pursue them with everything you’ve got.

4.  You rush a miracle man, you get rotten miracles

Be patient. Change and growth takes time, and there are no corners to be cut here. Every kid is working to their own schedule and developing at their own rate.

5.  Don’t believe the hype

There are people who make a lot of money from making you believe in the Dread Pirate Roberts. Snake oil salesmen bank on the fact that you will be too distracted by fear to focus on things like facts and common sense.

6.  Never start a land war in Asia

Well that’s just good advice.

7.  Success means using the right moves for the terrain

There is no definitive intervention for autism. The choices that other people make may not be the right ones for your family, and vice versa... and that’s okay. Don’t ever let anyone make you feel otherwise.

8.  There’s not a lot of money in revenge

Don’t spend your life feeling bitter, blaming yourself, hating autism or resenting parents of typically developing kids. It’s a fruitless and costly waste of energy that can be directed into more productive things.

9.  Inconceivable doesn’t mean impossible

Your kids will achieve things beyond what you ever expected or imagined. Believe this and they’ll believe it too.

10.  You may already have a wheelbarrow

It’s easy to focus on liabilities, but don’t forget to take stock of your assets too. What skills do your kids already have that they can use to help navigate their challenges?

11.  Who says life is fair? Where is that written?

Let go of the expectation that you have more than your fair share of crap to deal with. There are no shares. You don’t have a big pile of crap, you have life. Go live it.

12.  Sometimes words don’t mean what you think they mean

If your kids are having trouble communicating, look beyond the words that they’re using. Thinking about the way the word is being said or the broader context can help you to recognize echolalia or find clues to the word’s intended meaning.

13.  Wiggling a finger is worth celebrating

Take time to enjoy even the smallest of accomplishments, for they were hard earned and are signs of bigger things to come.

14.  You always come back for the ones you love

Let your kids know that no matter how hard things get or how confusing life may be, you’re someone they can depend on to help them find the answers. After all, true love doesn’t happen every day.

15.  When there’s no time to explain, use a summary

Practice summing up their main challenges and needs so you can recite them quickly when you need to explain or get help in a hurry. “My son is autistic and finds loud noises frightening, is there somewhere quiet we can wait?”

16.  Mostly dead is slightly alive

Even when you’re too tired to breathe and the odds stacked against you seem enormous, you will survive to fight another day.

17.  It’s one hell of a story

Sure there’ll be laughs, adventure, pain and tears... but at the heart of it all, it’s about love.

Have fun storming the castle!

Bryce's Point System

I was recently inspired by an Aspie mom's (for those who don't speak "spectrum" Aspie is short for someone with Asperger's, a cousin of Autism) point system for her daughter.  We have had a basic chore chart for Bryce where he could earn stickers for doing his chores.  When he earned enough stickers he got a certain amount of money.  This worked well enough (when we remembered to do it) but he's not really into stickers to start with.  He IS, however, a huge fan of numbers and math.  So I created a much more involved chart listing all sorts of things for which he could earn points.  Every time he gets 100 points he earns one dollar.  Currently he is SUPER motivated as he wants Wipeout 3 for the Wii.  He earned over 100 points the first day.  He just kept going back to the list to see what he could do next to earn more points.  Hopefully the newness will wear off just a bit, or we'll go broke! I'm a little worried that he will lose motivation after he accomplishes this first goal, but for now it's working well.  The boys also want to go to Disneyland desperately, so we'll start saving for that next.  (Although that will take WAY longer than saving for a Wii game) I made things that are more difficult for him or more important for us a higher value.  Some things may seem odd (see: socks and sitting by Charlie) but he has obsessions and aversions we have to deal with, so this is one way to do that.  So far, so good- we'll see how it goes!

Bryce’s Points

Before School:

Make bed………………………………………………………………… 2 points

Put breakfast dishes in the sink……………………………………. 2 points

Pack school snack……………………………………………………………. 5 points

Get dressed………………………………………………………………….. 2 points

Tie shoes…………………………………………………………………… 10 points

Brush teeth…………………………………………………………………….. 2 points

Comb hair…………………………………………………………………. 2 points

No arguing with Mommy or Daddy before school…………………….. 8 points

At School:

Focus on work and listen to Mrs. Linda and Mrs. Montgomery

Great Day…………………………….........….. 10 points

Good Day………………………………………………. 5 points

OK Day………………………………………………….. 2 points

After School:

Play IXL, Stretch Math or Ticket to Read……………………. 10 points

Do homework without arguing or complaining……………………… 5 points

Play outside for 10 minutes…………………………………………. 10 points

Play with toys (not iPod, Wii or computer) for 20 minutes…… 25 points

Do a puzzle…………………………………………………….. 15 points

Read a book out loud to Mommy or Daddy…………………………. 15 points

Eat dinner without complaining (no saying, I don’t like this).. 5 points

Put your dishes in the sink…………………………………………… 2 points

Play a game with Henry (Chutes and Ladders, Old Maid)…. 5 points

Put pajamas on……………………………………… 2 points

Clean up room before bed (put away clothes, toys, shoes)… 5 points

Any Day:

Take off socks for 10 minutes………………………. 10 points

Go poop in the toilet all by yourself…………………….. 50 points

Play with toys………………………………………..30 points

Read a book………………………………………… 10 points

Scoop dog poop………………………………….. 5 points

Empty the trash………………………………….. 5 points

Practice piano………………………………… 10 points

Sit next to Charlie………………………………… 5 points

Study Master Club verses………………………. 5 points

Exercise………………………………………….. 10 points

Looking Back: How it all Started...

While looking through another "special" mom's blog about her sweet daughter, I saw some pictures and read some comments that brought back a rush of memories.  When I started this blog, were were a couple years past the "beginning" of this journey, but I did write several Facebook notes as we were struggling through getting a diagnosis.  So this post may be a little long, as I'm copying each one of those here, to keep them all in chronological order.  It's a little painful to look back on those times and remember the hope that it was nothing big-that the doctors wouldn't find anything and he would just "grow out of it" as so many people said for so long.  But it's part of who Bryce is today, and I wouldn't change a thing.  

(Due to the copy/paste from Facebook, the layout of this blog post is atrocious! I apologize in advance-just do your best to slog through it) 

The Enduring Saga of Bryce and his speech issues

by Nicole AndJared Burkholder on Tuesday, March 18, 2008 at 7:59pm ·

Ok, so I've never written on one of these things, but I figure it's like a blog, so here goes. I took Bryce to the neurologist today. His Pediatrician recommended it, just to be sure we weren't missing anything in the whole "why doesn't Bryce talk yet" department. Sooooo, after answering the same questions I've answered a million times, the Dr. said what I already know...he's a tough case, doesn't fit the typical guidelines for Autism, there are some serious concerns still, etc. He really didn't tell my anything new, but he did say that he would recommend him for speech therapy (which my insurance has already turned down once). AND, now he has to have an MRI (which there's NO WAY on earth that he will hold still for, so he'll have to be sedated, bringing up more insurance issues), and sleep deprived EEG (so we get to wake up in the middle of the night and haul Bryce down to Corona, so they can hook him to a machine and look at his brain waves) and on Friday I get the pleasant job of holding him down while some lab tech tries to draw blood!!! YUCK! After all this, we have to go back to the neurologist for another visit. Yay. I just hope this isn't a big fat waste of time and money. But like the Dr. said, he'd love to be proven wrong, and we will give Bryce the benefit of the doubt for now. However, if we don't raise any concerns, he won't qualify for any help that he needs. And, we could never know for sure what's wrong-we just have to keep doing what we can and hope and pray that things work out in the end.

Taking blood from a three year old should be an Olympic event

by Nicole AndJared Burkholder on Thursday, March 27, 2008 at 5:55pm

 ·

Soooo, I had to take Bryce to get his blood drawn last Friday. THAT was an experience, I must say. Poor guy, he was not happy. The scary part for him was being held down. I had my legs wrapped around his, my right hand holding his left hand, which was crossed over his body, and my left arm holding his body against mine. He started crying once we had him held down. Then they took what seemed like an eternity to decide where to stick him (while I'm holding a VERY strong boy down and trying not to puke myself). Finally she got the needle in-I don't think he even noticed at that point. He was just sobbing this sad little cry. They took four vials, so it took awhile just to finish. I think everyone waiting in the room with us was a funny shade of green and yellow when we were done. BUT, he bounced back quickly and was over it once I took the tape off his arm and got him into the car seat. What a brave boy!

Now, we have to go to Loma Linda for an MRI. That should be scheduled next week sometime. He has to be sedated for that one. (I'm sure that won't be too bad, unless they use an IV for the medicine. If that's the case, see the above paragraph.)

Then, on April 14th, we have to somehow keep him up until midnight the night before, and then wake up at 3AM and keep him awake until 5:30AM, at which point they want me to magically hit the button and get him to sleep, so they can do an EEG on him while he's sleeping. Do these people have kids??? I'm not looking forward to that day either. All of this had better show something, or we just had a big, tiring, painful waste of time!

My day began at 3am and I am so sleeppppppppppppp;/.///kkkkknm

by Nicole AndJared Burkholder on Monday, April 21, 2008 at 10:17pm 

Well, we took Bryce to his EEG today. That was an adventure! We had to keep him up until midnight Sunday night, so we went over to Grandma and Grandpa's house after church until 10:30pm or so. Then we went to Winco to get some groceries (I think people there were wondering what kind of parents we were to have our son out that late). We were home around 11:30pm and I put him to bed. We then desperately tried to get to sleep as quickly as we could, while sucking ever last bit of rest from our brief "nap." At 3AM the alarm went off and my body said whaaaaa??? Poor Bryce was so confused when I went into his room to wake him up. He kept pulling his blanket back up over his head and trying to ignore me. We finally got him up and convinced it was a normal morning (shower, dress, eat breakfast and watch cartoons). At 4:15 we left the house to head to Corona. I was nervous when no one was there to let us into the Dr.'s office, but a lady showed up around 5:10 and let us in. I had to get Bryce settled down and back to sleep as quickly as possible. And would they have a nice comfortable bed to sleep in? NOOOO, that would make people's life too easy! He just had to lay on a regular examination table! That hard, plastic stuff with no covering at all. Poor kid. Luckily he was delirious with exhaustion and put up with it. I got him to sleep after 20 minutes or so and called the nurse in to begin the test. She had to get like 30 wires connected all over his head without waking him up! She kept saying things like,"he must be a light sleeper" and "does he always move like this?" Wouldn't you, if someone was sticking paste on your head and shoving things all over you? I had a tough job just to keep him asleep/drowsy enough not to notice that his head was a technological form of Medusa. Well, we finally conquered and got him hooked up and ready to go. Of course, he slept very soundly once we stopped poking him. So the rest of the test went well. We drove home and went BACK to bed at 7:30AM (I am usually just getting OUT of bed at that time). Got a couple more hours of sleep in before having to get to work for the day. Wow! I'm ready for bed! That's all for nowwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww;af

Major Medical Tests are not Designed with Children in Mind!

by Nicole AndJared Burkholder on Thursday, July 10, 2008 at 1:55pm 

We finally had Bryce's MRI done today. His neurologist wanted one to help rule out Autism and check to see if there are any abnormalities. As all of his other tests have come back negative, we are not expecting anything to show up on this either. But it was just good to have it done and have the films on hand for any future problems. We should find out the results in a couple days. It was more traumatic for me than Bryce, I think! He had to be given and IV, in case the sedative didn't work well enough, and because his MRI was with contrast, which is where they inject something that lights up abnormal parts of the brain and maked things easier to see. The IV was the worst! He started screaming as soon as they put the rubber band around his arm. :( He kept saying, "Are you alright?" "All done!" "Thank you, all done!" That did for me. I was bawling like a baby and trying to keep him from seeing me cry so he would believe me when I said it was ok! :) They finally went with the foot for the IV, which was easier to hold him still and keep him from pulling it right out. After they were done (props to the Tech-once they decided on the spot, the needle was in and out really quickly) I was able to sit and rock Bryce for awhile to calm him down. Then we had to get him to drink this nasty smelling stuff that would put him to sleep. Most of it ended up in my hands and all over his shirt, but I guess it's pretty strong, because 15 minutes later he was asleep! After that, things were easy. I left him with the Nurse and she wheeled him into the MRI room. I don't know what happened after that-the scan took about 50 minutes (which is why he had to be sedated). They came back when he was done and we went with him to recovery. He was already awake when we got there, but still a little dopey. It didn't take long at all for him to come around and he checked out with good O2 levels and BP. We are home now, trying to keep an active boy quiet and still for the day! Thanks for your prayers!

Bryce's Diagnosis

by Nicole AndJared Burkholder on Wednesday, September 9, 2009 at 1:17pm 

Well, several years of struggle and wondering have sort of come to a head this week. We took Bryce back to the neurologist last Tuesday for a one year follow up of his last visit. During that visit, he decided to officially diagnose Bryce with Autism Spectrum Disorder. He says that Bryce has a Mild to Moderate case of autism. This wasn't really a surprise, since everything else has pretty much been ruled out, but it's still hard to hear. The thing that really pulled it all together was a meeting that I had with his teacher yesterday. She told me last year that she was ready to change everything in his next IEP to show that he was exhibiting obvious signs of autism the older he got. Things especially got worse at school after the baby was born. She started to broach the subject with me at the meeting, when I interrupted and said that we were just going to tell her that we had a diagnosis from the neurologist as well. Talking to her about his behavior in class and seeing the progress as well as the red flags was helpful. It pretty much solidifies the diagnosis in my mind, so I don't feel like we're missing something and just "settling" for a diagnosis. Anyway, the good news is, since he's now diagnosed, he qualifies for more services from the school district! The BEST news is, his teacher has been fighting for an ABA program in the school. ABA is Applied Behavioral Analysis, and it's an early intervention technique for spectrum kids that teaches skills they need in life, but in small easy steps. Not all autistic kids are helped by this, but his teacher and I both think that Bryce would thrive under this instruction. It's also every day, instead of a couple times a week. PLEASE pray that the district gets the program going quickly. Bryce's next IEP meeting is due October 30th, and we will discuss his new services then. THIS WILL REALLY HELP AND WE NEED IT!!!! :) Another thing we are doing is applying for SSI child disability, which would help pay for additional speech therapy and other services at home. That takes up to 6 months to get approval, so we'll just have to wait and pray, but it would help in the financial are immensely. We just can't afford the help that Bryce needs, so we are at the mercy of the school district. (Which also means he has to be a student in the public school system-something I NEVER wanted for my family) If we can get some funding, we may be able to still get him in Christian school or homeschool later. SOooooooooooo, that's the latest. Please pray with us about this-it's our daily burden that we carry. We are glad to know what's wrong, but sad to know that there's something wrong with our "baby", you know? But he makes progress daily and is a joy to our family-I wouldn't have him any other way. Thanks for your prayers!!!