Puzzle Piece Rewards System

Weeks of sticker charts!
DLTK's Custom Chore Charts!

For a long time, we have been doing the typical sticker chart to encourage Ethan to use manners, maintain good hygiene and become more independent. After a sticker chart was completed, Ethan would get $1 for his bank. That worked for awhile but then the novelty wore off. Getting a sticker for brushing his teeth was no longer worth it to him....and the battles returned.

So, we began to up the ante! Each night, we would count his stickers & he would earn 1 coin per sticker. And when his sticker chart was full, he would still earn a dollar.

Want to know a secret? I would just re-use coins already in his bank, so it didn't cost us any extra money. Shhhh....don't tell Ethan!


Well, that worked for awhile, but soon that began to wear off too. The battles were beginning to start again....fighting to brush teeth, fighting to self dress, and I was losing my currency with Ethan!

24 piece puzzle from Dollar General. 

And, once again, the Changing Challenging Behaviors Workshop from Easter Seals came through for us!!! Ms. Dona, leader of the workshop & Ethan's ITAP program, showed the class several strategies & examples. Corey & I immediately knew that we had found our solution.....puzzles.

How do puzzles work in place of a sticker chart? For every demonstration of desired behavior, Ethan earns one puzzle piece....instead of one sticker. Once Ethan has completed a puzzle, he gets to pick a prize/toy out of the prize bin I've put together. Things from the dollar store, happy meal toys, garage sale finds....nothing that costs more than $1 each. ETHAN LOVES IT!!!!

In the middle of a puzzle!
Almost time for a trip to the prize bin!

It has been working longer than anything we have tried before! He loves gaining a puzzle piece, loves putting the puzzles together, loves digging for toys in our prize bin! Initially, I was cutting up the cardboard boxes of his fruit snacks, cereal, pop tarts, and other recognizable logos. But once Ethan got the hang of it, we needed to go to more puzzle pieces so he wasn't earning a toy EVERY day. 

I am thrilled to report that this is STILL going VERY well, and he loves earning puzzle pieces!!! Now our battles are diminishing! Picking up toys, brushing teeth, turning off the computer, trying new foods, behavior in new places, and other issues are able to be a managed so much better with this new form of "currency." HOORAY FOR PUZZLES!

My Behavior During A Meltdown....It Needs To Change!

Have you ever had an "Ah-Ha" moment? A moment, conversation, story, or event that opened your eyes to things happening in your own life which changed your behavior/way of thinking forever? I had a very key parenting ah-ha moment last night regarding Ethan's meltdowns.

Last night, Corey & I attended a workshop provided by our local Easter Seals branch. It was entitled, Changing Challenging Behaviors and was taught by the director of Ethan's ITAP program. This woman has so much experience & is so educated.....I wish I could have her on speed dial!!!  But I will settle for spending a couple of hours listening to her talk about this particular topic.

During the workshop, she gave us so many new ideas & resources, and we are excited to try them with Ethan. The woman is truly brilliant! But my big realizaton came almost at the end of the session. All workshop long, Ms. Donna was telling us how to change unwanted behaviors, but thankfully she included a section of what to do WHEN meltdowns occur anyway....despite all our efforts.

I was pretty proud of myself as she was describing how to react to a meltdown....I knew most of them & felt that I was pretty good at them....being calm, don't take it personal, don't use it as a time to teach, and so on. However, one thing she said was, "limit touch or talk during this time. It is like adding fuel to the fire."

He's Eating New Foods!!!

The last several posts (click #1 or #2 to read them) have been leading up to some very exciting news! ETHAN HAS BEEN EATING NEW FOODS THIS WEEK!!!! Pinch me 'cuz I think I'm dreaming!

 The food issue is sooooo maddening to me.....a girl who literally loves all food. I don't understand this "picky-eater" thing AT ALL! And I used to REALLY fight this battle with all my might. But, whether good or bad, I just grew tired of fighting with Ethan at EVERY meal. I just decided to focus on what I could help him with....table manners & sitting at the table LONGER than a minute. We also eat in our living room a lot now because we have an eat-in kitchen & the smells are too much for Ethan. In fact, we have even moved our dining room table INTO our living room!

But THIS WEEK....THIS WEEK ETHAN HAS EATEN & ENJOYED SEVEN NEW FOODS!!!

Beef Stew

Pizza Pocket made with crescent rolls

Pringles

Jelly Beans

Cinnamon Raisin Biscuits

Spice Cake

Chicken & Noodles

Ethan & I "cheesing it up" at dinner!

He also TRIED cheesy scalloped potatoes & LICKED apples slices in therapy at Easter Seals. This is from a child who wigs out whenever he sees apple slices approaching the dinner table! However, when we went to the new Chick-Fil-A restaurant & was served WAFFLE fries, he wouldn't touch them. Fries are not shaped like waffles. Oh, that kid cracks me up!

Now, I realize that all of these foods are not SUPER healthy, but they are foods that he would have NEVER tried in the past....and now he is willingly eating....and loving them!!! CRAZY AWESOME PROGRESS!

This just reiterates that doing sensory play at home as well as having Ethan in occupational therapy is paying off big time! I can't wait to see what new foods he will eat this week! I'M SO EXCITED!!!!

***OH YEAH! One more thing! Ethan's school occupational therapist has told me that Ethan is able to zip up his own coat, but he has NEVER done it for me. It was always a frustration/trigger that would set him off, and I would end up doing it for him. Recently, we dug out a "new to us" hand-me-down jacket for Spring.....and ETHAN HAS ZIPPED IT UP EVERY TIME HE'S WORN IT!!!!!! WOO-HOO!!!!!!!

Monday, Monday.....

It's been a typical Monday around here today. Ethan wanted no part of any self dressing today which messed up our morning routine resulting in Ethan not having a packed lunch for school and me having fresh out of the shower hair. At least I got my shower & teeth brushed! We are all thankful for that!!!

After I dropped Ethan off at Easter Seals, I went to get coffee with Laura, who does the marketing for our area Easter Seals. In April, Ethan's ITAP program will be featured in the newspaper, and they have asked our family to participate as the "face" for this particular article. It was a very pleasant couple of hours, visiting & retelling about Ethan.....of which I could do all day! I am very excited to help Easter Seals promote this ITAP program since it has helped our family so much.

After Ethan was done with his morning preschool at Easter Seals, we drove through for lunch (since I hadn't made it that morning), and headed over to his afternoon preschool. He was showing no signs of distress, so I imagined that today's drop off would go smoothly.

Nope.....

As soon as I parked the car, he started. I opened the side door of our van, and he was already on the floorboards throwing a fit....not a meltdown....a fit. I guess I just am done being Mrs. Nice Mom when it comes to this daily situation. I just told him that I was going to school, and I walked away from him. I didn't offer any transition toy, no calming words, no bartering....I just walked away & left his door open. I was about 4 yards away from the van when I hear, "Mommy! Mommy! Mommy!" He was panicking.....but coming.

He stayed about 4 yards behind me the entire time....and I kept glancing back at him. He kept his head down and was walking very slowly....but he was walking into school. YEAH! The last 2 days of school, I walked him to class & even stayed with him through lunch which is the first thing they do after hanging up bookbags & coats. Today, I wanted to see if I could just walk him to class. I did just that...and he was fine. No crying.

I just don't get why he is so determined to make that transition so tough, but I feel like the adults in his life are doing all we can & know to do for him. And if he still continues to have a difficult time, well......so be it, I guess.

Hopefully, the rest of the week goes a little smoother with getting him to school. As Scarlett O'Hara says, "After all, tomorrow is another day!"

School Stress Solved....We Hope!

Last summer, we place Ethan in Easter Seals autism preschool program, Intensive Therapy Autism Program or ITAP. We did this in order for Ethan to continue his progress that he had made through our school districtr's preschool program. He had made great strides...especially in his social skills....and we didn't want him to "lose" those things he had learned. Plus this program would include therapies that he desperately needs. It was perfect for us.

We were planning only doing the ITAP program for the summer, but we discovered that we could do it alongside of his existing district preschool program! We were thrilled! So, this year, Ethan has been going to ITAP for 3 hours, 2 mornings a week and attending his general education preschool every afternoon for 3 hours. Well folks, from the very beginning of this school year, Ethan has been fighting against this new schedule. At first we thought it was just due to his digestion issues. Well, that lasted for about 3-4 months before we discovered the issue & could help Ethan feel better. I assumed that once that subsided, his fits regarding going to school would stop. It didn't.

After Christmas, Ethan seemed to be even more agitated, and his teachers reported an increase in physical aggression towards his peers in the classroom. I asked the therapists at his ITAP program, and they too had noticed this change. We began looking into helping Ethan express his emotions in a more acceptable way by focusing on understanding his emotions. He can match an expression with a face, no problem. But actually knowing what that emotion feels like in his body.....there was the missing link. And that is a difficult thing to understand. Especially for Ethan who thinks that saying he feels anything other than "happy" is "wrong."

The other day, Ethan was frustrated with his fine motor skills. He became so frustrated that he threw whatever it was that he was playing with. Instead of getting upset about his reaction, I sat down next to him & told him that he was FEELING frustration. I pointed to the emotion card picture and repeated what he was feeling. "Ethan, you are feeling frustrated because putting the card back in the box is a little tricky. It's okay to feel frustrated. When you feel frustrated, use your words & tell me that you feel frustrated." This is how I have been instructed to help Ethan understand his emotions. A funny story...Ethan was in the bathroom taking a bath. I was in the living room picking up toys, and Ethan called for me to come & "watch him play." I told him that I was cleaning the living room and would be there soon. Pretty soon, we heard splashing from the bathroom & Ethan yelled, "Mommy! The face I am feeling is mad!"  Hard to ignore the splashing  behavior, but I was so excited that he recognized the feeling & verbalized it! I praised him with my excited voice from the living room....but I still didn't go in the bathroom. I didn't want him to think splashing equals mommy comes immediately.

So, this area has been going well. We have been using social stories about personal space, and ITAP has been working with him on what to do when you feel mad/sad/upet/etc. We even have given Ethan's preschool a copy of these materials to use at school as well. However, Ethan's willingness to go to school has still been decreasing. From the moment it's time to go to school to the time he walks into school, it is all out meltdown city. I have tried everything....an expected routine before school time, transition toys, positive & negative consequences, and even bribed him with fast food (his favorite). Somethings would work for a couple of days, and then back to war. I have taken him to the car literally kicking & screaming while I carry him...and this kid is 52 pounds! One particular day a couple of weeks ago, Ethan was so upset that he began banging his head against his car window & biting himself. I pulled into the parking lot of school, carried him inside, and he reluctantly went with his peers. I came back to the van, and guess what happened.....yep.....I lost it.

The next day as we started to begin to get ready for school, he started up again. Folks, I just didn't have it in me anymore. I deemed ourselves a "Snow Day" since several schools in our area were closing for bad weather. I just needed a break from war. He had worn me down, and I was waving the white flag in defeat. Everything is a battle with him....eating, sleeping, self help skills.....and I was ready to pull him out from school. At that point, I just didn't think it was worth the fight nor did I think I had any fight left in me.

I kept Ethan home from school the rest of the week. We still attended ITAP and went to our church's playgroup in order to get in some socializing. That Saturday, he spent several hours at my sister's house with her 2 kids, and she reported no aggressive behavior whatsoever. Maybe the break was doing Ethan some good as well. Maybe I should pull him out of preschool?

Well, after a few days of "recovery," I came back to my senses. Pulling Ethan from preschool would not solve any issue he was having....it would just be running away & Ethan needs to learn to work through things....not be put in a bubble...no matter how much I would love that protection. Ethan is able to handle this situation, and I needed to take my big girl pill and face it too.

This past Thursday, Corey & I had a meeting with his principal, his classroom teacher & his case worker. We found out that Ethan's behavior in the classroom had drastically improved in the last several weeks before our self given break from school. Seems as if working on emotions has been helping! So why the recent extreme fits??? We brainstormed several ideas, and it was a very wonderful meeting. We think maybe the transition from playing at home to coming to school is hard on him.....as transitions are usually difficult for him. Since a transition toy did not help Ethan, I am now the transition toy. :0) I will be walking Ethan to his classroom door, bypassing the students lining up at the door. And if I need to stay & eat lunch with him, I will do that too. And the last 2 days, I have done so. And it seems to be helping a lot.

Ethan is not the only one learning & progressing. I have learned a lot this school year, too. I'm so thankful for Ethan's team to be helping him but helping me learn as well. Would I handle this situation differently in the future? Probably. Did I learn a lot during this time? Absolutely. We all want the best for Ethan & want him to have a positive learning experience, and we are sooooo blessed to have these particular teachers & therapists in our lives. We all know that bad days will occur....maybe even bad weeks. But having a group of people that are flexible & understanding makes things so much easier.

G.I. Referral & Gluten Free Diet

WARNING!!! THIS POSTING WILL BE TALKING ABOUT POTTY ISSUES! CONSIDER YOURSELF WARNED!!!!

Today marks 5 weeks of Ethan having severely loose stools. It started at the same time as cold-like symptoms occurred, so I assumed it was all related. When we saw the doctor the first time, I mentioned this to her but it was more in the form of a list of other things going on with Ethan. However, everything else has cleared up....but this explosiveness remains. We have followed doctor's instructions, and eliminated milk products (we already do that anyway), removed juice from his diet (only a splash to his water to add flavoring), and started him on a pro-biotic. Yet, the diarrhea remains.

This poor kid is unable to make it to the bathroom many times, having accidents at school, and says his belly hurts. 5 weeks of this.....arg. We have been to the doctor 2 times during this time as well as calling weekly for updates & "what now?" We have collected stool samples & had them tested. Everything has come back fine.

Today, we just came home from the pediatrician's office, and they are now referring Ethan to a Gastro Intestinal Doctor. It won't be for a few weeks, but I'm already sick to my stomach over this news. On one hand I am glad that things are moving forward which, hopefully, means that relief is coming soon. But on the other hand.....I am soooo dreading these next steps. I'm already envisioning horrible invasive testing, a new doctor's office, new faces, and a whole lot of trying to keep Ethan from being anxious.....which also means trying to keep me calm so he doesn't feed off of my nerves. UGH!

In the meantime, the doctor suggested trying to switch over to a gluten free diet as well as watching his sugar intake. So....I guess I have a lot of homework to do. I just went to Kroger & bought pretty much anything that said gluten free on it. :0) If anyone has some helpful advice or tips regarding any of this, I would REALLY appreciate it! I just want my little guy to feel better!!! THANKS!!!

Here is what I got at my quick Kroger shopping trip. With a 4 year old in tow, it was hard for me to read labels or focus, but I guess this is a start.

Overcoming an Obstacle

Anyone heard of Monkey Joe's? It is a fun place for kids to play.....they basically have wall to wall inflatables that kids can jump, slide and play on, and most kids LOVE it! However, these inflatables are constantly being filled with air by blowers.....which adds noise to the already noisy room. Not only is this place very loud, but it is usually very crowded with people. Lots of people & lots of noise.....these are 2 MAJOR triggers for our little guy who deals with sensory processing.

Last year, a Monkey Joe's opened up in our area, and it is now the newest place to take your kid for fun. When I first heard about it, I was so excited, and couldn't wait to take Ethan! Jumping, bouncing, flopping.....he loves all of those things! But then I heard about the crowds & noise, and I, once again, added something to the "we can't do that" list. And every time I add something to that growing list, I am thrown back to my initial emotions of this journey. Yet another reminder that, "Your child has autism."

Then the birthday party invitations started coming.....most of them held at Monkey Joe's. At first, I was determined to not let this be a road block for Ethan, so I agreed to try & attend. Well, then I got sick, and we couldn't go. After that, I just decided I wasn't quite ready to tackle this place just yet. Soon, but not yet.

Well, guess what folks......we finally did it! Last week, we met my aunt & cousins who were visiting from Texas at Monkey Joe's. And Ethan did GREAT! No sound-proof headphones, no major meltdowns, a few bumps & bruises but nothing out of the ordinary! It was great!

Yes, it was crowded, and that was a little overwhelming for Ethan, so he mostly played on 2 inflatables that were in the back room in the far corner. Yes, it was loud, but the blowers to the inflatables gave it a mostly white noise effect that tends to be soothing for Ethan. He made it about an hour and a half, and then he started crying at every little thing......an indication that he was at his max. So, my husband took him next door to Big Lots where he requested a box of Pop-Tarts. This kid LOVES Pop-Tarts.

This isn't probably something we will be able to do often, but Ethan kept saying how much fun he had at Monkey Joe's. I jokingly asked my husband if we should have Ethan's next birthday party there, and he just gave me a "Are you kidding me?" look. However, I think we will be saying YES to any future birthday parties held there.....and that is HUGE for this family! We are taking Monkey Joe's off of the "can't do it" list! AWESOME!

Here are a few pictures of Ethan having a great time at Monkey Joe's!

Sleeping & Map Updates!

I recently talked about how Ethan was entering a new phase of getting out of bed on his own in a post titled A New Sleeping Challenge. I LOVE that he has this new independence, but we were very worried for his safety. One morning, I woke up to....what I thought was....a prowler in our basement. When I got up to investigate, I realized that Ethan wasn't in his bed. I instantly went into crazy mama mode thinking someone was taking my child. As I quickly & non-rationally made my way through the house, I was met on our basement stairs by a very scared Ethan....who was crying & said to me, "Oh Mommy! There you are! I lost you!" Not only was I super sad that he thought he lost me, but our basement at the time was in no shape for him to be unsupervised due to us converting it into a sensory playroom (update on that later this week). This sent us into action that day.

A couple of weeks prior to this, Ethan began a summer preschool program at Easter Seals. The drive is about 35 minutes, and he would get very anxious on this "long" drive. So, I came up with the idea to give him a map to help him realize where he was at in his journey. You can read more about this on my post titled Maps. Since that first map, we have created many more, and we now have a variety for Ethan to choose from....although he loves to receive a new one.

Who knew that these two situations would collide?! In order to help Ethan understand what he should do if he gets out of bed before his parents (which is happening nightly....about 3am), my husband built off of our map idea! Since he does the bedtime routine and is excellent at explaining things to Ethan, he introduced Ethan to his new bedtime map. Corey also does vinyl work as a hobby so he used a couple of leftover pieces to cut out shapes for our floor & create a path for Ethan to follow....just like on his map! (Stickers or colored tape would work too!) It's hard to explain in words, so here are a few pictures....

Here is our collection of Maps to get us to Easter Seals. Ethan will play with these even on days when we don't have class!

Here is Ethan's nighttime map. It's very worn because, again, Ethan will play with it during the day. It leads Ethan from his racecar bed, to the bathroom & then to our bedroom to find me. Notice the white stars & the orange circles.

Here, Corey laid out a path of white stars from Ethan's room to the bathroom & then orange stickers from the bathroom to our bedroom.

A closeup of the sticker paths.

We also installed extra locks on the doors that we don't want Ethan to get into....we placed them high enough so even with a step stool, Ethan can't reach them. We did this the day we found Ethan in the basement. I'm just so glad he didn't go outside!

This nighttime map has been working GREAT! In fact, I don't even think he uses the map anymore....he knows what to do now. But he still likes to play with it during the day.....line his cars up on the paths or practice the routine. I'm not quite ready to remove this visual aid quite yet, but that is more for me....I don't want to find him crying & scared because he can't find me!

He is still getting up in the middle of the night most nights, but we just pull him into our bed....which may be why he is doing it. :0) But, in a weird way, I almost sleep better after he comes in....I know where he is & know he isn't roaming the house. Eventually, we will have to put him back in his bed....I know that will be the next step.....and then maybe he will stop getting up in the middle of the night....who knows. But until I know things are cemented into his mind as to what to do in the middle of the night, I am more concerned about his safety & knowing he is ok....even if that means more cups of coffee during the day.

Feeding Frustration & Fortune

Popcorn, poptarts, bacon, chicken nuggets, chips/crackers, fruit snacks, applesauce, and Spaghettios. These are the things that Ethan will eat faithfully. That's it. So, I KNOW that he isn't getting the amount of nutrition that he needs in order to have healthy bones or to help with his muscle development and other things growing boys needs. I have talked about this before, and I did find a few ways to sneak in the healthy stuff. To read about that, click here.

But the NEW issue is that Ethan doesn't WANT to eat.......he wants to play. So now he isn't even eating the 8 things I know he likes! I was telling all of this to my sister while we were cleaning up Ethan's birthday party. He didn't eat much during the party because he wanted to play. And then he was crabby after the party because he was hungry.....but didn't eat when the rest of us were eating. It is so frustrating for me. As I was telling this to my sister, Ethan comes up to me & asks for a poptart. I just wanted to scream! NOW he was ready to eat, and he is gonna eat junk. Great. Here's my mom of the year award down the drain! :0)

My sister, I'm sure sensing my "limit," scooped Ethan up & took him to her fridge. She opened the doors & asked him what he wanted. He immediately spotted a logo that he recognized.....Motts. As in Motts Applesauce. The surprising part is not that he picked applesauce or even the logo.....the surprising part is that he ate is all......and it was PEACH applesauce. I about fell over in my chair. Unbelievable.

So, my new thing that I'm trying out is not feeding Ethan until he ASKS for food.....and then give him choices of good things. I also had him pick out what flavor/brand of items while at the grocery store due to a tip from my sister....the only person that has gotten Ethan to eat a strawberry. (She took a picture otherwise I wouldn't have believed it! And, PS Rachel - he picked out Mott's PEACH Applesauce at the store!)

I've done it all this week, and it seems to be working great! He is getting more fiber, protein & fruit (still no veggies) and less carbs & sugar. I was able to sneak in some yogurt in our grocery cart because it has Cars on it, but he still didn't like it. Oh well. Baby steps. I'm just glad he is eating & getting better nutrition. And of course he is still getting his multivitamins.

It is still a challenge because everyone in my family is eating at different times, so it makes dinner time at the dinner table a little hard, but I guess that will be my next challenge. Or maybe we could "play" dinner table & use that time teach table manners as well as sitting at the table for longer than 5 minutes. But that's for another time. For now, I'm just so thankful that Ethan ate OATMEAL today! WOOHOO!

***Update - I generally write my posts days before they are published. Since writing this post, Ethan has eaten a bigger variety of food than every before! Including TILAPIA fish! This is really working for us!

A New Sleeping Challenge

A common trait of kiddos with autism is that they don't sleep very well....and Ethan is a TERRIBLE sleeper. Thanks to a sound machine, a few calmly moving night lights, a pacifier, and a weighted stuffed lizard, Ethan was been able to get 10-12 hours of sleep during the school year....even if that meant dropping his afternoon nap.

And if my loving Ethan did not get his sleep.....yowza! Look out! He is super whiny & teary! (He gets that from me.) So, we were very strict with Ethan's 7:30pm bedtime so he could get enough sleep & get up on time for morning preschool. Now that summer is here, however, we have been very laxed on his bedtime. Ethan has been going to bed around 9pm (unless he shows signs of needing to go to bed earlier), and waking up about 8am. His summer preschool is in the afternoon as will his new preschool time starting this fall.

However, the last several weeks have been rough ones. Ethan will get up & out of bed almost every night between 3am & 6am. He then wanders the house & can't find us. We finally wake up to hear him crying because, as he says through his tears, "Ethan lost Mommy." One day, we even found him in our construction zone basement...scary.

We have been trying to get him to understand that if it's dark when he wakes up, that he can come to our bedroom.....that's where mommy & daddy will be when it's dark. But it hasn't clicked yet. So, because I don't want him to be scared or hurt himself, I have been sleeping on the couch in the living room....and we installed additional locks on our basement & outside doors.

Well, the last 2 nights, he has found his way into our bedroom.....but he is still crying.

This is such a new sleeping challenge for us. Until now, Ethan has always laid in bed until we would go open his door & get him up. So, I'm really glad that he has realized that he can get out of bed on his own, but now we need to help him know what to do next.

We have been talking about marking our floors with colored tape arrows. The first set would be to go potty & the 2nd set would be to our bedroom. Or maybe some kind of alarm on his door that alerts us when it is opened. I don't know....I need to do more research.

Because of all of this, Ethan now will randomly repeat what I have told him by saying, "Mommy won't leave you alone. Mommy will always be in the house." And now he is my constant shadow. While I do love that my boy wants to hang out with me so much, I know that it is coming from a place of fear.....and I don't want that for him. Plus, I'm sooo tired during the days now that we are hardly doing any home therapy....and I don't like that either!

Well, if anyone has any ideas, please comment & let me know. I will do more research as well & tell you all how it goes from here. My coffee pot is working overtime these last few weeks!

The Dreaded Haircut

Anyone else have kid's that HATE getting their hair cut? UGH! Ethan HAAAATES it. Thankfully, my mother-in-law went to cosmetology school, and then had years of practice on her own 4 boys. So, typically, she is the one we call on when Ethan's hair begins to get a little long. However, in the summer, he & Daddy usually get buzz cuts. It's simple & great for summer.

Since Ethan seemed to have an especially difficult time getting over the last Grandma hair cut (every time he would see her, he would panic & say, "No hair cut today."), we decided to give Grandma a break & do the buzzing ourselves. My husband is usually the one who does this since he, too, has been perfecting this hair cut since his days of cross country/track running. But tonight, I took a shot at it since Corey is working on the basement.....and I REALLY don't want to ask him to stop! I REALLY want that room done! HA!

I took care of all of the "issues."

1. He hates to have the falling hair touch him. I put a cape on him.
2. He hates the sound of the buzzers. We played a silly "tickle" type game with the buzzers on his legs & arms. He got used to the sound & feel of them.
3. He doesn't know what is going on. I sat him in front of our mirror.
4. I gave him a fidget toy.
5. I put ear plugs in...both for sound & light hair falling on his ears.
6. I had my Mary Poppins personality in full gear....I was playing games, being silly, singing songs, etc. I must say....I was in full super mom mode.

Oh. My. Goodness. It totally did NOT work. He BAWLED the WHOLE time!!! There goes my Mom of the Year award.

But....his hair is cut, and it's done & over. And the beauty of a buzz cut....a longer time until the next hair cut. And next time.....we are calling Grandma!

My Church Party

What I am about to share with you is something that I can't believe I'm going to actually say out loud....well....write out loud. But, since my main goal is complete honesty...the good, the bad, and the ugly me without coffee....here it goes.

Growing up in church, I went to every church function. My parents philosophy was, "If the doors are open, we are going." And because of this and the way they lived their lives, I began my own personal relationship with Christ when I was in 5th grade. I was very fortunate to have parents who taught me about Jesus as well as lived their lives according to His ways. I knew that I wanted to have a relationship with Him too.

Fast forward to a few years ago, 6 months after Ethan was born, to the new devotional book that my husband and I were reading through together. Night Light for Parents: A Devotional written by Dr. James Dobson & his wife Shirley. It is a great book. But one question posed in this book was, "What did your parents do or didn't do that helped you come to know Christ?" Well, both my husband and I gave our lives to Christ when we were young, and we want that for Ethan as well. So, we decided that we would continue to attend church "every time the doors were open" as well as continue to live our lives for Him. We just re-committed ourselves to doing this having the new realization that this could help lead our child to a life with Jesus.....our biggest desire for him.

So that was the plan. Sunday morning Sunday school, Sunday morning church services, Sunday night service, Wednesday night service, and all of the events & activities in between. It also helps that we LOVE our church. This is actually where Corey & I met & eventually married. Both of our families attend here, so ALL......yes ALL of Ethan's cousins go to this same church. It is home away from home.

However, the last year has been a real struggle to keep this commitment due to Ethan's sensory challenges. After 3 hours in his new classroom, we would find him spinning in circles in the middle of the room during the kids free-play time. After several Sundays of this, I could take no more. We had to cut down his time in this classroom....it was just too much for him.

So, now we are only going to Sunday morning Service and not Sunday school. Why do we no longer do Sunday night or Wednesday night? Because, since Ethan rarely naps anymore, he goes go bed very early. And if we mess with his sleeping schedule, he is harder to communicate with & he has more meltdowns as well as other difficulties. We don't mess with his sleep unless we HAVE to....it's too hard on him.

This doesn't mean that we don't love Jesus or our church, but our church "plan" has been altered. So, instead, we ABSORB Ethan's Sunday School class that he does attend. We do most of the recommended activities sent home that corresponds with the curriculum. We write, post, and practice the newest memory verse. We read the weekly story in Ethan's kid Bible at night. I even change my the desktop picture on my computer to match his Bible story of the week.

So....the new plan is FLEXIBILITY! Church is still a very high priority for us, but it looks differently than we had planned. Why is this such a struggle for me? Why is this such a big deal? Because it's part of the "dream" being lost. Because it's not how I was raised. Because it's not what we had planned. And that is hard for me.

However, I am finding encouragement as I read through God's Word. I am reminded of Paul who was under house arrest, and could not be with the church as he wanted. And during this time, he wrote these words..."And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28. And this is helping me during this time of heartache.

But, this has been soooo much better for Ethan. He now calls church "My Church Party." LOVE! He loves going and no more spinning. And soon I'm sure he will be able to handle more. But for now, this is where we are.....and I am trying to be okay with it but it is hard. I miss my Sunday school class. I miss my Bible study. But it is what is best for Ethan right now, and this mama will ALWAYS do what is best for him. And when he says, excitedly, "Let's go to my church party!".....it is worth it!

Frustration

Warning! This post is a therapy session for me. I have just had a terrible day, and this is how I'm coping with it.....by writing. And one of my biggest goals of writing is to be completely honest, so don't say you weren't warned.

I am sooooo frustrated. Ethan has been pushing kids for months now, and it seems to be coming in waves. It gets bad & then it is fine...or at least manageable...and then it gets bad again. For the last couple of weeks, he has been less & less compliant in doing our usual activities....going to the bathroom, changing out of his pjs, getting his book bag, etc. He only seems to want to do what he WANTS to do, and nothing else. He even had a potty accident yesterday because he refused to go to the bathroom? What is going on with him? Ugh.

Then, yesterday, I was told that his pushing has gotten really bad....to the point that he pushed someone over in their chair. I hadn't seen him getting that bad at home, but I knew that he just hasn't been himself lately. So, just in case he wasn't feeling well, I kept him home today. And I saw it. He isn't just pushing kids until they fall down. He is shoving them. And several times today, he charged at the kids like a bull! THEN, once they were down on the ground, he is sitting/laying on them! Oh my word!

OK....I get that kids do this. I get that. My frustration is.....who do I ask for advice? Who has been through this? Who can give me a solution? Or at least a plan to stick to so I'm not flying off the handle because I am hearing my niece crying & yelling for help as Ethan is sitting on her?!?! My sister & I thought that me watching her kids would be a good idea, but it just seems like they are being bullied by Ethan. And it is hard for me because I don't want any harm to come to any of my nieces & nephews.....and yet I see my own child being a bully! UGH! I don't know what to do or where to turn?

Do you ever have days where you just want to curl up in a ball & cry? That is what I am feeling in this moment. I don't know what to do about Ethan's behavior. All of my resources are saying to try things that I have already tried. OR they are saying that he will just grow out of it. This reminds me of when Ethan was biting other kids when he was an infant. And....he did just grow out it.

But that doesn't mean that I look the other way & don't TRY to get through to him?! But I just feel like I have exhausted my brain, energy & resources trying to get him to understand that he is hurting other people. I just don't know where to go from here. I can't give up, but what do I do?

The thing that is helping me get through this rough patch with Ethan is that he is BOOMING in other areas. His speech is expanding & becoming more & more functional. It's crazy how much he has improved in this area over the last couple of months. He is also becoming more & more social. When we go out to restaurants, he has started asking to go sit with other families....the families with kids at their table. Love that he wants to go play with other kids! ('Course, he may just want to tackle them! HA!) He is also becoming much more independent. Just yesterday, he opened the refrigerator to get his water bottle out of the door. This was the first time he had ever done this on his own. BUT, he didn't just get out his water bottle.....he got out his cousins' drinks & passed them out to them! OK, he didn't close the refrigerator, but he did went I asked him. Today.....he closed it on his own.

OK.....thanks for the rant. Back to reality......wish me luck.

Surrender

I'm raising the white flag.

I can't do it anymore.

I can not cure my son. He has autism. He had it yesterday, and he will have it tomorrow.

My son has autism. My only child has autism. My beautiful Ethan has autism. Autism, autism, autism...

Right or wrong, this is the thought that runs through my mind everyday. I wonder if there will ever come a day when this fact doesn't cross my mind? I wonder if I will ever be able to play with my son without thinking of how I need to incorporate some teachable moments? I wonder if I will ever wake up in the morning without my first thought being how I can help my son today. I wonder if the overwhelming-ness of this new path of life will ever ease. Because it has almost been a year since the official diagnosis, and it still consumes my every thought. EVERY thought.

Last night, however, this mommy had a breakdown. I unloaded a mess of emotions that I didn't even realize I was feeling. Apparently, I have been harboring anger towards my husband over this past year. And it all came out last night during a late night cry session.

As we have been learning how to live with autism this past year, I have been the main person to be responsible for Ethan's care, therapy, and education. This was the arrangement when we first had Ethan. I would become a stay-at-home mom & take care of the kids (at that time we thought we might have more children). So, the bulk of Ethan's care has been under my "jurisdiction." And the Type A personality that I am, I take it all on....I can do it all, no problem.

Well, apparently, I can't do it all. And it's not that my husband doesn't want to help, but...again...asking for any kind of help or admitting that I need help goes against my grain. That would be like admitting that I'm a failure. Well....I guess that's what I'm doing. I can't do it all. It is too much for one person to do on their own.

My husband asked me last night why Ethan having autism is so consuming for me. I told him that it's like I see Ethan in a burning building, and someone has to go in to save him. So, I go into the burning building....I do things that I don't enjoy doing, I go to things that I don't want to go to, I do things over & over again, I read books, I go to conferences, I reach out to organizations....none of this for my benefit.....but to help Ethan out of the burning building. There is a inner driving force to save my son! Who's going to do it if I don't?!

We do have a team of firefighters...and they are AMAZING! Ethan's teachers, therapists, family members, friends....everyone is so awesome, knowledgeable, loving & helpful. But if his own parents are not part of the team, Ethan will be in that burning building longer. So, I strap on my uniform & head into the building. And that is what I have been doing.....but last night I realized that I forgot someone on my team....my husband. He wants to help too, but he doesn't know how. And I have had the thought that it is MY responsibility, and I don't want to burden him. He has enough burden as sole provider. Plus, honestly, it is just easier if I do things myself instead of taking the time to show/teach him what I have been taught.

But no more. I am exhausted. I am overwhelmed. I am stressed. I am tired. I need to find some balance while learning to live with autism. And I need to share the responsibility with my husband. He is WANTING to help & WANTING to learn....and that is amazing.

So, I am surrendering. This will be a process for me, and I don't think my autism consuming thoughts will change instantly....if ever. But as I learn to trust Corey in this burning building, I think things will be better for this caretaker. I can catch my breath, take a break, get a drink of water, and then resume the rescue. We all know that I won't ever stop fighting for my son, but I think it will benefit our entire family if I can learn to balance. It's time to start taking care of this caretaker....then maybe I won't go down in flames. :0)

Goodbye Winter?

Several of my friends have had a difficult winter dealing with sickness....and we have too. Someone in our family has been sick since October 2011. It just hasn't gotten cold enough this winter to get rid of the germs, I guess. Severe sinus infections, flu, pink eye, bad coughing and strep throat have set up camp in our house this winter, and I'm so ready to kick them out of the house. In fact, as I'm typing this, I am dealing with sinus stuff & really bad nausea. So no coffee today...just Pepto. :0(

I was able to manage taking Ethan to school today....who is on medicine for sinus junk too.....and when I came home, I saw a beautiful sight.......signs of Spring!!!! I am praying that the end of our sickness season is coming to a close. I am tired of missing opportunities for Ethan to socialize, to learn, to play, and to be a kid! We have missed several birthday parties, many church events, and lots of our typical weekly activities.....like visiting the library & playgroup. So, as I sit here & listen to the birds outside, I am filled with hope! Maybe our days of being ill are going to be gone soon!

Last week, I talked about how having Ethan socialize is difficult for me to watch. BUT...NOT being able to socialize is even HARDER!!!!!! I see all of these missed opportunities, and it makes me sad because maybe something would have helped Ethan during that birthday party or maybe something would have clicked for Ethan during that day at school. UGH! So....seeing signs of spring is really lifting my spirits!!!! COME ON SPRING!!!!! LET'S KICK THE SICKNESS OUT OF MY HOUSE!!!!!!!!!!!!! I'm tired of missing opportunities!

COME ON SPRING!!!!!!

Default Emotions

I LOVE Ethan's Preschool teachers & therapists.....they are amazing. These women are so knowledgeable & helpful. One morning last week when I was dropping Ethan off at school, Ethan's speech therapist approached me about an article that she had read about "Default Emotions" by Speech Pathologist Linda Hodgdon. She emailed me the newsletter containing the article, and it seems tailored for Ethan.

Linda writes about how when the child has experienced one traumatic incident (from their point of view), it can cause a "default emotion". This means that now EVERY TIME that experience occurs, the emotion occurs because the child is remembering the first occurrence. Here's an example of this manifesting itself in our Ethan.

Books. He LOVES books. And he loves to read. One of his favorite books USED to be The Monster at the End of this Book with Grover. So, when we were in Walmart, and he saw the book Another Monster at the End of this Book with Grover AND Elmo, he could focus on nothing else but getting that new book.

So, we bought it, took it home, and read it. I'm not sure which one of us read it with Ethan for the first time, but it was the first & last time. Now, when I begin to take it off the shelf to read it with him, he panics. "No, no, no, no..." over & over again until I put it back on the shelf. Well, one night, I decided to read it with him anyway in order to see why he hates this book so much....especially after wanting it so badly in the store. We read the book just fine, but he did have his hands over his ears. But, honestly, he does that sometimes when I read books with him. But we started getting to the end of the book, and before I turned one certain page, he started panicking & saying "All Done, all done..." Here is the page he didn't want to read...

I could see why this page would bother him. In the story, Elmo is scaring Grover....and Ethan is very sensitive to those things. Ok....I get that. But NOW.....anytime we read a book with this "Batman" type of words (BAM, POP, YOWZA, etc...), he has a "default emotion" & responds with sadness & crying.

This past weekend, I got out some new books. One of them is Old MacDonald had a Woodshop by Lisa Shulman. He thought this book was funny because that isn't the normal Old MacDonald. And in this book, Old MacDonald is a girl....he thought this was too funny. We were really laughing while reading this book.

This book is the type that Ethan really enjoys reading because there is a pattern to it, and we keep adding on to the pattern. Here is a typical page out of the book.

However, on ONE of the pages, one of the animals hurts themselves while working with their tool, and the word "OUCH!" appears....but very small. The first time we read it, Ethan did fine. But NOW when we read it or he reads it on his own, he puts his sound-proof headphones on.....for that page only!?!?

So, this is what Linda was talking about is a "default" emotion. Every time Ethan sees....I think it's an all uppercase word followed by an exclamation point....he has a very strong reaction. So, Linda suggests the following strategies to help with this type of reaction. Linda also points out that this type of default emotion is common is all kiddos, but it's the frequency & intensity that makes the difference in children with autism. And I personally think that's true for most of Ethan's challenges.

Anyway, here are Linda's suggestions. We are going to try these, and see if they help Ethan work through his emotions regarding what I call "Batman" words.

"It’s easier to teach a NEW ROUTINE . . .  than it is to change an OLD BEHAVIOR™ Default responses are hard to change. In comparison, new routines are easier to teach.

How do you teach a new routine?Visual strategies work really well. Think about how you teach any new routine. Here is a short list of possibilities.
• Create a mini-schedule for a specific time frame
• Write a social story about how to handle an event
• Make a video to demonstrate appropriate behavior for a situation
• Present a rule for a location or activity
• Provide some visual choices that will require appropriate behavior or appropriate responses
• Use a visual tool to assist communication in a difficult situation"

A Mom Cartoon

OK....so this has absolutely NOTHING to do with learning about autism......but about being a mom. It comes to us from NickMom's blog if you would like to see more funny illustrations like this one. I thought it was histerical, so I had to post it......hope you enjoy it!!!

What You Can Get Done in 30 Minutes WITHOUT Your Kids, Compared to With Your Kids

A Difficult Week

I am writing today with a heavy heart. I am typing at my computer while tears are streaming down my face. I am on my 4th cup of coffee, and it's only 10am.  I try to always be on the positive side when it comes to living with autism. To look at Ethan's victories over his challenges and not to dwell on his challenges he still faces. But this week has taken it's toll on me....and I need to write.

Ethan & his Daddy had an AMAZING time last weekend. Ethan made HUGE strides, and I am so excited for him. Monday, we all had the day off of work due to the Martin Luther King, Jr. holiday. It was another great day. So, Ethan has only had school 4 days this week.....and every morning we have endured a 20 minute meltdown.....and I don't know what is triggering it.

From the moment we start getting ready for school (putting on socks, shoes, gloves, hat, coat, etc....) until the moment he sees his school, he is in tears. He is so upset that he can't "use his words".....and I have no idea what has changed. Obviously something has, but to me....it's business as usual. We still are doing everything that is routine....everything on his "list".....so I'm continually wracking my brain to figure it out.

Then, yesterday, the school told me that he had a bad day at school too!? Then, I was playing a Memory Game with him last night, and it was meltdown after meltdown. If he didn't make a match, meltdown. If it was mommy's turn, meltdown. If I said "YEAH" when I made a match, meltdown. This is a game we play all the time, but for some reason he wanted to to it HIS way, and anything else made him meltdown. What in the world is going on?????

I have pulled out ALL of my tricks. Even brought up some things from the basement that he no longer responds to.....but I figured it was worth a shot. We have limited his technology usage because sometimes that helps. The strange thing is that he is FINE when Daddy is around.....I'm thinking about pulling out one of Corey's dirty shirts from the hamper & wearing it!?!? Maybe smelling like Daddy will help? I'm so desperate!!!!!

Who knows what it is?.........
*Is it his new gloves?
*Do his clothes itch?
*Is there a new sound in the house that I am not hearing?
*Is he not feeling well?
*Is he having a growth spurt?
*Is he upset with ME?

OK....I know that last one seems ridiculous, but it's very hard not to take his behavior personally....ESPECIALLY when he is fine for Corey. Like yesterday, Ethan didn't tell me AT ALL when he had to go potty. BUT, minutes after Corey got home, Ethan went to him & said, "Daddy, I have to go pee!" WHAT IN THE WORLD??????

So, I'm at my wits end......literally. I have no idea what to do for Ethan. I don't know what's wrong or how to help him. So, after I came home from taking the boys to their schools, I got online to check my resources. My attention was drawn to a NY Times article talking about changes in autism diagnosis. As I was reading this article, my attention was drawn again to a video on the side of the webpage. I clicked on the video & began listening to the "Patient Voices: Autism". I immediately went into the ugly cry as I listened to Marguerite Kirst Colston talking about getting through bad days with her son who has autism. She put into words how I am feeling today, and it was so nice to know that others out there are having the same struggles. Her sharing her story has helped me endure a bad day.

Here's what she had to say...."I’m often asked what a typical day is like when you have a child with autism. My son Camden is full of life, full of challenges and full of excitement. He is non-verbal, needs significant assistance and has several medical issues. So, while there are schedules to our days, a day is never typical. There are good days and bad days, and I’ve learned that simply building more good days is the best goal.

On a good day, we conquer our world together. Good days usually start when we both have had enough sleep (there’s probably a research study out there confirming my theory, but I don’t need to see it to know that sleep is key). Schedules work, pictures are used and we both see minute-by- minute successes. Camden eats his breakfast and helps clean the kitchen. There is lots of running outdoors. Smiles and giggles are mixed with a determination to get that awful work task (in his opinion) done, so he can get computer time. We go to bed exhausted, but tired is a really nice feeling after a good day.

A bad day is when I don’t have enough reserves to help him through the day. It may start off with a tantrum over a certain shirt or wearing socks. I take the battles one by one. I likely end up wearing his breakfast, and he gets on the school bus a bit hungry. He self-stimulates more to try and cope; I drink a cup of coffee and put my head in my hands. At the end of that day, I think, “I can’t do this.” But the next day, I wake up and he’s my son, and, of course, I can do this. I can build more good days."


See?! She drinks a cup of coffee for her mini-breaks too!!!! So, I'm hoping this weekend will be full of observation & changes in order to discover what is triggering Ethan in the morning. Hopefully next week will be better.

List Update!

Last week, I made Ethan a 25 Days of Christmas Chain, and he was wanting to open all of them at once. So, in order to help him understand "tomorrow", we made a quick "order of events" list that helped him know when it was time to open another chain link. This was about a week ago.....and he already is independent from this list!

I have noticed that the last couple of days, he hasn't looked at the list in the morning. However, when I pick him up from school, he says, "Step one complete! Step two....come home." This has shown me that in less than a week, he no longer is relying on reading his list. He has already learned the steps....what comes next.....and that is the ultimate goal for any of these step-by-step lists.....to learn/understand the sequence & no longer need the visual/audible support. I'm so excited to see that Ethan is already independent of this list.

So....this is giving me an idea. During Christmas vacation, I was considering trying the potty training thing again. But he is still being very adamant about not using the toilet.....I think I tried it too early & he has bad feelings about it or something. A couple of weeks ago, I quit everything related to potty training because he was holding it in....and we had to intervene medically....yikes. So, listening to my instincts & others' advice, we have backed off completely.

But....there are some other things that we could really focus on during Christmas vacation. And since my husband home for a week as well, this would be a perfect time to work on some things. So....I am planning on working on some of Ethan's independent skills.....getting dressed, brushing his teeth, eating, and so on. I have been doing all of these by giving Ethan the step-by-step instructions verbally. I tried the picture sequencing thing but that didn't do the trick, so I have continued to do it verbally. BUT....he responded so well to the list that I want to try it with these other skills as well. So.....stay tuned......more lists will be coming soon!!!!

Oh, the Noise! Noise! Noise! Noise!

If you've ever read the book or watched the movie of How The Grinch Stole Christmas, this may be a familiar to you.....

...All the Who girls and boys
Would wake bright and early. They'd rush for their toys!
And then! Oh, the noise! Oh, the Noise! Noise! Noise! Noise!
That's one thing he hated! The NOISE! NOISE! NOISE! NOISE!.......

Well, I can relate to Mr. Grinch's point on some level. Although my Ethan is not much on talking, he does not lack for making noise! In the last couple of weeks, I have realized just how much noise he makes!!!!

Most of my understanding of Ethan & his character/personality comes through observations. He can't communicate very well with his speech. Most of his vocabulary is canned phrases that we have practiced with him over & over again until he understands them. Then, he is usually able to do what they call "generalize" these phrases. For example, we worked very hard on "I want a drink, please." Before this, he would just bring us his sippy cup & shove it in our hands. Once he understood that if he needed something, he needed to use his words & ask us, he was able to carry this phrase into other parts of his life as well.....generalizing. Almost a year later, and he still uses this coined phrase......"I want help, please. I want to go to Steak-n-Shake, please. I want to stay home with Daddy, please." He has built onto it, but the same format is still used.

So, if I ask Ethan a question that we haven't worked on, he won't know the answer & he doesn't respond at all. Like today, I asked him, "Who gave you the Santa stamp on your hand?" He answered me with a teacher's name. Then, I said, "What did you do to earn a stamp?" And there was silence. This isn't a question that we have done before.....we have really been focusing on "who?" questions lately. This is why I must use my observation for most of my Ethan information. (And I think a lot of us use observation to learn about each other....autism or not.)

Anyway, back to the noise.....even though Ethan doesn't talk a lot.....that doesn't mean he is a quiet child. My house has noise going constantly! Any toy that makes any kind of noise at all, Ethan loves. And he will play it over & over & over again until the batteries wear out. BUT!!! It's never just one toy....it's usually THREE toys! And, he kind of acts like a DJ with turn tables....when one of the toys stops making the sound, he will immediately go to it & "fix" it so the noise starts again. Last week, his top three toys to play with AT THE SAME TIME were his Shake-n-Go cars, Playhouse Disney's new holiday online games, and a Musical Winnie the Pooh electronic-type game. Now, you may ask, why don't you turn one of them off or take one of them away. Well....that is something that I have tried! But, guess what happens! He will find ANOTHER toy that makes noise. And if he can't find a toy, he will make his own noise.

This past weekend, I was watching him play cars. This means he lines up his Hot Wheel cars one at a time on our big window sill. I was impressed because the only noise that was going on in the house was coming from the TV that Corey & I were watching. However, as I continued to watch Ethan, I noticed that he WAS making noise.....he was making cars sounds. But....these car sounds, I noticed, had a certain pattern or rhythm to them. Then, it finally dawned on me....instead of humming the song, he was making car sounds to the tune of the Menard's jingle. So funny! And right now, as I am typing this entry, Ethan is playing with a gears toy that makes music & turns gears, a musical, dancing Christmas chicken dressed as a reindeer, and a musical penguin that makes noise when you push him over & he pops back up. Nothing else is on....no TV or music. But this is one of the two times during the day that we "allow" Ethan his down time (after school & lunch), and so I just sit here listening to the Ethan symphony.

So, maybe I shouldn't be too hard on the Grinch.....I kinda get it.