Sensory Room Progress....or not....

Due to the amazing weather we have been experiencing, we have been spending A LOT of time outside. Bike riding, walking, jumping on the big trampoline, swinging, sliding, coloring with chalk, kicking a ball, and so on. LOTS of moving & heavy work....the whole point of me setting up a INDOOR play room. In this sensory focused room, I envisioned us rollings on scooters, swinging on indoor swing, animal walking through sensory stimulating paths, crashing on a crash pad corner, and lots of messy tactile activities. BUT....we have found a couple of glitches in the last couple of weeks. We were told when we bought this house that the water damage to the walls was due to a gutter related issue, and it had been fixed. However, as the paneling & such has come down, we have found that to not be the case. And, I have been convinced by my husband & others, that it would be pointless to finish the basement (where the playroom will be) without first fixing these issues. In the words of Ethan, "I'm so sad."

So, we have been told that the best thing to do next will be to dig around the outside of our basement walls & seal the walls. Boo. So, that will be what is next for our play room...an outdoor project for my husband. And since he has gone back to school, this will more than likely have to wait until his semester has finished.

This is very disappointing to me, but then I realized that it has been nice outside, so we can do most of the needed therapy things outdoors! And, I am hoping to enroll Ethan into at least one summer program that will help him burn off his mounds of energy. So, I guess the basement will have to wait until the fall.

Until then, I can focus on making/finding supplies for the playroom. And, to help ease the blow of disappointment, my husband has given me the green light on some home improvement projects upstairs. I love how well he knows me. :0) I'm not going to pretend that I'm not upset that the playroom won't be ready until next school year.....it stinks! But, I'm going to try to focus on what we can do OUTSIDE, and enjoy this amazing weather.

Adaptations for All Learners

This past Monday night, I attended a workshop that was given by Project CHOICES titled Adaptations for All Learners. It was a 3 hour workshop, and we covered a variety of topics. It was very interesting for me as Ethan's mom but also as a teacher....the material spoke to both groups. I learned a lot...here are a few of my notes....

1. There are laws in place to protect students with disabilities.

*The Federal Law protects students with disabilities - "The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation."

*The State of Illinois also provides similar protections. Illinois State Board of Education (ISBE) has a Least Restrictive Environment's policy for schools that states "students with disabilities aged 3 through 21, in public or private institutions or other care facilities, are educated with children who are not disabled. The ISBE will monitor programs and institutions that serve students with disabilities to ensure that the first placement option considered is a regular education environment, with the use of supplemental aids and services as needed. Special classes, separate schooling, or other placements by which students with disabilities are removed from the regular education environment should occur only if the student's Individual Educational Program (“IEP”) team determines that the nature or severity of the disability is such that education in a regular classroom setting, even with the use of supplemental aids and services, cannot be achieved satisfactorily."

*Those who spend more time in regular education experienced better results after high school. US Dept of Eduation 1995. Basically, what can we do to grant our kiddos "full membership" into the regular education room.

2. IEP notes. An IEP is an Individualized Education Plan that is a legally binding document which spells out exactly what special education services your child will receive and why. These are created by the student's team. Ethan's was done with many teachers & therapists as well as family members. He will be having his year end review in April where we can revisit his plan & edit if needed.

*The parent or guardian can request an IEP review meeting at any time, but it must be for a valid reason or concern. The school has the option to deny this request. If this happens, which is rare, the parent or guardian can take the next step of requesting a due process hearing.

*Write specific adaptations in the IEP. Things such as requesting study guides to come home before a test or even before the class begins to study that topic in order to preview material, providing the textbook on CD that comes with the teacher's manual, supplying visual aids, etc. The important thing is to implement a process of what will best help the student learn.

3. Adaptations. There are 2 categories of adaptations....accommodations & modifications. Accommodations changes HOW a student learns (providing a book on tape, changing how a worksheet is laid out, adding pictures to word-based materials, etc). Modifications are changing WHAT a student is expected to learn (having the student label the 3 main parts of flower instead of all of them, shortening a student's spelling list, etc.)

4. Examples of accommodations......my favorite section! We made/used...

Word Wackers

Squishy Bags or put them together & make a Squishy Book

PVC pipe phone. A child can hear themselves read.

Plastic Plates as dry erase boards

Foldables

and lots more! I also met several new parents & teachers, and had a wonderful time. I even won a book! I am so glad I attended this workshop because I have so many more ideas that I would like to incorporate into our home life (visual aids & games). Plus, it was just a big motivator as those things tend to be.

One thing that I was really excited to learn about was an upcoming event for parents! It's an evening with the Sisters of Imperfection, Gina Gallagher & Patty Konjoian, authors of Shut Up About Your Perfect Kid - A Survival Guide for Ordinary Parents of Special Children. If you are interested in learning more, you can go to Heart of Illinois Down Syndrome Association or register at www.brownpapertickets.com.

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.

Carly Fleischmann

I follow Autism Speaks on Facebook, and tonight as I was checking my updates one last time before bed, I came across a book that is soon to be in print. A book titled, Carly's Voice. This book is written by Arthur Fleischmann, father to Carly Fleischmann, a 16 year old girl with autism. After I clicked the link to this new book, there was an option to view a sample chapter....so I did. I was immediately drawn in to the emotions of the father....I could instantly relate. And then, I found this video on Carly & her amazing story. Please take the time to watch this video. It really is amazing. I will definitely be pre-ordering this book......just amazing.

Four Amazing Men

I shared this with our church's disability ministry's advisory panel, and I would like to share it with all of you. Someone once said that if you read the Bible with the theme of disability, you will discover a whole new side of God. And this has been the case for me. 

One story in-particular really has stuck with me, and this is what I shared with the panel. It comes from Mark 2:1-12. Here is the story....

A few days later, when Jesus again entered Capernaum, the people heard that he had come home. They gathered in such large numbers that there was no room left, not even outside the door, and he preached the word to them. 

Some men came, bringing to him a paralyzed man, carried by four of them. Since they could not get him to Jesus because of the crowd, they made an opening in the roof above Jesus by digging through it and then lowered the mat the man was lying on. 

When Jesus saw their faith, he said to the paralyzed man, “Son, your sins are forgiven.”

 

  Now some teachers of the law were sitting there, thinking to themselves, “Why does this fellow talk like that? He’s blaspheming! Who can forgive sins but God alone?” Immediately Jesus knew in his spirit that this was what they were thinking in their hearts, and he said to them, “Why are you thinking these things? Which is easier: to say to this paralyzed man, ‘Your sins are forgiven,’ or to say, ‘Get up, take your mat and walk’? But I want you to know that the Son of Man has authority on earth to forgive sins.” 

So he said to the man, “I tell you, get up, take your mat and go home.” He got up, took his mat and walked out in full view of them all. This amazed everyone and they praised God, saying, “We have never seen anything like this!” 

There is a lot to dissect from this story, but when I read this after Ethan was diagnosed with autism, my heart immediately went out to the FOUR AMAZING MEN who were carrying the disabled man. What do we know about these men?

1. They were determined - To carry a grown man on a mat is not an easy task. How long did they walk? Where were they traveling from? I don't know, but even carrying a man on a cot down the street would take a lot of energy. These men would have to have been determined in order to accomplish this physically exhausting task.

2. They were problem solvers - When they arrived were Jesus was, they encountered an obstacle....they couldn't get through the crowd. However, this did not detour them. Instead they thought outside of the box (or door), and came up with a solution.

3. They were hard workers - Here these men has carrying this man all this way, and now they were to carry him up a set of stairs. Once on top of the roof, they essentially dug a hole in the floor to open up the home's ceiling. 

4. They were desperate - They lowered this man on his cot down into a room of strangers. These men could no longer do anymore. They had to trust this man's fate into the hands of the people in room....people they probably did not know.

5. They were men of GREAT faith - These men did all of these things because they KNEW that Jesus could heal this man. They KNEW that their efforts to see Jesus would not be in vain. They KNEW that once they took this man to Jesus, he would be healed. Amazing faith.

As a person helping to develop our church's new disability ministry, I find these four men to be very inspiring. I pray that we as a team & as a church are able to do all of these things for our specific audience of people who have special needs. I pray that we are doing all we can to bring them to Jesus. I pray that we don't give up, that we think outside of the box, that we work hard, and have faith that Jesus will help to heal these families....not from the disabilities but from the wounds of the world that every single one of us have.

As a mother of a child with special needs, I pray that I begin to trust my church family to carry my child the rest of the way. I, as Ethan's mommy, have a great responsibility to show & teach Ethan all about God & his love. And I accept this responsibility. But I know that it takes more than one person to teach a child. He will watch my example, but he will observe others as well. He will learn things from others that I can not teach him. He will be mentored by others, and I need to trust in my church for them to accept this responsibility as well. And, thankfully, we are blessed to be a part of a church family that WANTS to do this. 

So, our church has created Mosaic Ministries, a ministry specifically for those with special needs. We have created an advisory panel of parents, family members, teachers, therapists, experts, pastors, and people who have or work with people with disabilities. This is just the jumping off point, and I am so excited for what our future holds. I am very overwhelmed with joy to see so many people who are passionate about bringing ALL people to Jesus....even if that means we tear up the ceiling.

We Hit The Jackpot!

One day, as I was reading about diagnostic statistics regarding autism, Corey came up over my shoulder & read probably the most common statistic about autism.

1 in 110 children are diagnosed with autism.

Corey told me that he didn't know this data (although I think he just forgot), and then I proceeded to tell him another statistic.

 

1 in 70 boys are diagnosed with autism.

Corey then says to me, "Huh? We hit the jackpot, baby!" as he raises his hand for a high-five. Although I returned the high-five, my mind had already begun to drift. Not moments earlier, I was looking at these same statistics, and thinking, "Why did this happen to Ethan? Why couldn't he have been one of the 69 other boys? Why did he not overcome the odds?" Now, I rarely have these moments of sadness & self-pity, but they do happen....that's just the honest truth. And then I look at my child, and I am reminded all over again at how awesome he is, and how blessed I am to be his mommy. But, truthfully, I have never really considered him or us to be LUCKY to have autism. This comment from my husband really threw me, and I have really chewed on this idea over the last several weeks. Ethan? Lucky to have autism? Hum.......something to think about.....

And then last week, I began reading a book by William Stillman, an adult with Asperger's Syndrome. The title of this book is Empowering Autism Parenting: Celebrating & Defending Your Child's Place in the World. I had actually gone to the library for a book on helping Ethan socialize with other children, and how I might be able to help him achieve that when I saw this book's spine......and grabbed it as well.

I was reading in Chapter Two - Healing & Acceptance in the section titled "Why NOT me?" He was talking about this same concept. Instead of thinking, "Why Me?", think of "Why NOT me?" What characteristics or traits to I have that would help me in raising a child with autism? Again, I had never considered this kind of thinking. And then a paragraph knocked me over.....

"Would you be surprised to learn that I hear from a number of parents who are informed by their CHILDREN with autism that they were CHOSEN as parents by their child, prior to birth and with deliberate intent? (In one instance, a mom told me her son said he chose her over a Japanese couple because he didn't want to learn their complex language!)"

Whether I think this is true or not is not the issue. The paragraph gave me chills. Imagine.....being personally chosen by Ethan to be his parents? That idea.....that concept......is pretty amazing. 

At the end of the day, usually after Ethan is in bed, I begin to reflect on my day. I think about the challenges that we faced, the frustrations that we are trying to work through, the communication barriers that we encountered, the fun activities that we did together, and the laughing that we shared. And, like most parents, I feel that I have missed the mark COMPLETELY.  And, yes, in that moment.....I doubt my worthiness of raising a child with special needs. I doubt my wisdom, my patience, and the choices that I made during the day. But, then I usually end my day thinking that NO ONE could love this child more than me....no one. But, still, never did I ever consider myself LUCKY for this opportunity. Not until these two seemingly random statements.

But I guess I am lucky! Lucky because Ethan is such an AMAZING kid, and I love everything about him. Ethan's autism is just one part of him, but I love that part of him as much as the others. I find him to be funny & fascinating, joyful & wondrous, and sweet & mysterious all at the same time. So, yeah.....we did hit the jackpot! We have such a special little boy, and I wouldn't change a thing about him. We are definitely the lucky ones.

What Faith Can Do by Kutless

I heard this song on the radio yesterday, and it really resonated with me. Hope you enjoy!

The Most Wonderful Sound in the World

"Mom, mom, mom, mom......"

I have said this repetitive pattern many times in my life to my own mother. I have also heard other children saying this to their own moms. And usually, the response is an annoyed or exasperated, "What!" LOL....this is such a common occurrence, and I'm sure you have watched this scene play out with mothers & their children over & over again in your own life....or even experienced it with your own children. Every time I have viewed/heard this dialog it has made me chuckle. Classic.

Well, when I became a mother, this is something that I was looking forward to....being called mom. But as Ethan's speech became non-existent, this dream of hearing my child call me mom was slipping away. However, he did eventually call me mom well after his 1st birthday, and I was overjoyed. I was so happy to hear my child call me mom....he knew that I was his mom. Love.

But, he doesn't call me mom when he talks to me.....only to label me. "Mom, can I have some cereal? Mom, can we go outside & play?" These are sentences that don't exist in our house. Only when I quiz him. "Who am I? Mom." And NEVER the repetitive, "Mom, mom, mom, mom..." This is something that I never thought would be possible, and I was fine with it. I just so happy  that Ethan could even say the word "Mom." So blessed.

And then it started......

For the last couple of weeks, he has been doing the repetitive pattern, but calling me, "Aunt Wo." This is because he is mimicking what he is hearing my niece & nephew do...and they call me Aunt Wo. And, honestly, I was so glad that he was addressing me with my name in conversation that I didn't care he was calling me Aunt Wo. I was super excited. Well, my husband began reminding Ethan, "What's her name? Who is that?" And every time he would say, "Mom." He knew my label but wasn't yet generalizing it into his conversation. But as Corey kept reminding Ethan of my name, Ethan began to use my label in conversation.

And yesterday........

I was driving home from picking up my husband from work. (He sold his car & we are currently down to one car until he finds a car.) Corey & I were talking while the kiddos were watching a movie on the DVD player in the back (a first for them in my van!), and Ethan started saying.......

"Mom, mom, mom, mom....."

And I responded, "What!" Just instinctively! LOL!!!!

And now.....I hear my name being said in conversation! "Mom, will you sit by me? Mom will you run with me? Mom can I have a Pop-Tart please?" IT'S GREAT!!!!! And something that I thought I would never hear has set up camp in my house. And it's the most wonderful sound in the world!!!

Progress on Ethan's Eating

This past week, we have really been focusing on expanding Ethan's diet to include all of the food groups...and not just bread. We have tried a lot of new foods, and have had a variety of reactions.....

Loved it - Bananas, new fruit snacks, smoothies, whole grain Chef Boyardee, V8 Fusion juice, pumpkin pancakes, and apple cinnamon oatmeal cereal bars. 

Ate a few bites - Grilled cheese, yogurt covered raisins, GoGurt, taco meat, salsa, and brown sugar oatmeal cereal bar

Spit it right out - Scrambled eggs, watermelon, mandarin oranges, canned sweet potatoes, and McDonald's Shamrock shake (not healthy...but a new food)

I was pleasantly surprised with Ethan's reaction to new foods. When Ethan was about 18 months old, he began to stop eating most of the foods that he typically ate...which was a wide variety. Then, he started loosing weight. So, I adapted the idea of, "I don't care what he eats as long as he eats." He regained his weight, but was developing TERRIBLE eating habits. I actually felt a relief when I watched the Temple Grandin Film, and they showed that she only ate green jello & a specific type of yogurt. Not only could I see Ethan's eating habits in Temple, but I was glad that Ethan ate more than 2 foods.

Ever since then, every time I would have Ethan try a new or different food, he would have a meltdown. I decided to pick my battles & focus on Ethan's behavior & speech. He would occasionally surprise us, and eat something out of the ordinary....like a pork chop at Grandpa Buster's house or a strawberry at Aunt Rachel's house. But when I would try those things at home, he would refuse & meltdown.

Well, since I have started watching my sister's kids during the day, Ethan has been more apt to try new foods. In fact, I wrote awhile ago about him actually TOUCHING a hot dog & even taking a few bites. Amazing. So, since I am trying to ask for help & not do it all on my own, I have brought my husband into this challenge. Corey & Ethan have very similar tastes in food, so I basically bought the food items that Corey likes....when he's eating more than just meat & potatoes.

But this week, I would swap out an old food for a new similar food, and encourage Ethan to take a bite. We have also been eating in the living room in order to avoid the strong smells in the kitchen. Surprisingly.....very few meltdowns!!! It has been AWESOME!!! He has been trying more food this past week than he has EVER tried for me!!! I'm so excited!!! So, this week at the grocery store, we bought....

*White American cheese (to try on grilled cheese)
*Strawberry/banana flavor of V8 Fusion juice
*Red grapes
*Corn
*Peas
*Sweet potatoes
*Peaches
*Sausage links

***Update - I gave Ethan & his cousin sweet potatoes at lunch. Neither of them liked them, but they both tried them! Then, at dinner tonight, we had corn & mashed potatoes. Both of these were foods that Ethan loved as an infant, but stopped eating. In fact, whenever we would try to give him mashed potatoes, he would throw up due to the texture of it. However, tonight at dinner.....he ate ALL of his corn & ALL of his mashed potatoes!!!!!!!!!!!!!!!!

I was fighting back tears so Ethan could see me being happy that he was eating his new foods. (Tears = Sad) Another miracle at the Wolfe house! I know it's just food, but it is a HUGE step for Ethan. It's these little victories that lift my spirits & give me the energy to keep doing what I can for my son. I want the world for him, and I pray every day that God continue to keep His hand on Ethan. So, yeah, when Ethan eats a food that he was throwing up a couple of months ago, I see it as a miracle......a mashed potato & corn miracle.

Will You Light It Up Blue with Me?

The last couple of weeks, our family has been preparing for April 2nd, 2012...our first time celebrating Light It Up Blue. Since our family has been directly effected by autism, we thought it would be awesome if our entire family would help spread awareness by taking part in this day as well. So, we have put together Light It Up Blue Baskets (and one box to be shipped) to take to our extended family members in hopes that they too will participate.

Our baskets include our homemade soap, a blue light bulb, Autism Speaks bracelets, Blessed Are Those magnetic poem, and blue M&Ms. (It has been too hot to bake our brownies this week, so I went with blue store bought candy.) All of our items are sitting on a blue disposable plate.

I wrapped it all in blue cellophane wrap & tied it with blue ribbon. Here is the completed Light It Up Blue Gift Basket.

Ethan is only 3 years old & unaware of his diagnosis. However, we still thought it was important for him to understand about helping others & giving to others. So, we drove around our city & had Ethan deliver our gift baskets.

Teachable Moment - Ringing a doorbell & waiting

 

"Will You Light It Up Blue with me?"

We told him to ask the question, "Will you light it up blue with me?" Who can say no to a cute little 3 year old, right?! So, now we are asking you.....Will you help us spread autism awareness and Light It Up Blue on April 2nd?

Courage & Coffee has started a Facebook page. If you are participating in Light It Up Blue, take a picture & post it to our wall! I would love to see what you all are doing!!!! Remember, it's Monday, April 2nd (the Monday before Easter), and the entire month of April is autism awareness month!!!!

Corey, Ethan & Me...ready to Light It Up Blue!!!

Light It Up Blue Magnets

The last thing we are making for our Light It Up Blue baskets will be a print of the Blessed Are Those poem.I printed these poems out on my printer, had them laminated, hot-glued a blue puzzle piece to the front, and added magnetic strips to the back of it. I am hoping that our family members will place this on their refrigerators, and, when they look at it, remember how important they are in Ethan's life....and mine too.

First, I printed the poem (in blue ink) & had it laminated. Then, I grabbed some of the blue painted puzzle pieces & a roll of magnetic tape.

Then, I fired up the hot glue gun, and glued one puzzle piece at the bottom of each poem.

I liked the 3-D look of adding an actual puzzle piece to the top of the paper.

Then, I added 2 strips of magnetic tape to the back of the poem...at the top & the bottom.

The magnetic tape kept curling due to it being packaged in a spiral. So, I place the poems under some heavy, flat dishes for a couple of hours in order to flatten them out...worked great.

The final product on my refrigerator!

The poem is listed below. Be sure to have some tissues handy....I cry EVERY time I read it.

Blessed Are Those

I. Blessed are those who stop and listen to my chatter. You may not understand me; but I love when people talk to me, for I long for companionship, too. 

II. Blessed are those who take my hand and walk with me when the path is rough, for I easily stumble and grow weary. But thank you, too, for letting me walk alone when the path is smooth, for I must learn independence. 

III. Blessed are those who take the time to tell me about special happenings, for unless you make special effort to inform me, I remain ignorant. 

IV. Blessed are those who wait for me. I may be slow, but I appreciate your patience. 

V. Blessed are those who are not ashamed to be seen in public with me, for I did not choose to be born thus. It could have been you as well. 

VI. Blessed are those who do not pity me, for I don't want pity. All I want is understanding and respect for what I have learned as well. 

VII. Blessed are those who notice my accomplishments, small as they may seem to you. I must work long and hard to learn many of the things you take for granted. 

VIII. Blessed are those who include me in their games, even though I may not understand the rules, I still like to be included in your activities. 

IX. Blessed are those who think of me as a person who loves, and hurts, and feels joy and pain just like you do, for in that respect I am normal. 

Author Unknown

Light It Up Blue Brownies

Well, this isn't really a great thing to do while focusing on eating a more balanced diet, but....what goody basket would be complete with out....well....goodies!!!! As part of our Light It Up Blue baskets that we are making, I figured that we HAD to include a delicious treat of some sort. So, still trying to think outside the box as far as what to do, I came up with brownies. What is so out of the box about brownies? Well, other then they actually came out of a box (I don't bake), it's the decoration on the top.

Start with a pan of brownies, powdered sugar, and puzzle cleaned puzzle pieces.

Place the puzzle piece where you want your design to be & sprinkle over it with powdered sugar.

Here is the final result!

Autism Awareness good enough to eat!!!

Ethan's New Food - Day One

Here is how the first day of trying to help Ethan eat more balanced went.....

Breakfast - One his plate, I had 2 slices of bacon (typical), and instead of a Pop-Tart or cereal bar, I placed an Apples & Cinnamon Oatmeal breakfast bar. Even though the oatmeal bar has more sugar than one Pop-Tart, there is a lot more fiber, so it will keep him full longer. He ate the whole thing! And, actually, there was a little bit of bacon left on his plate when he was done....and that NEVER happens. This kid LOVES bacon. I also gave him a drink of 1/2 water & 1/2 V8 Fusion Concord Grape Raspberry...and he drank it all! YEAH! So for breakfast, he had more fiber & more fruit than usual. We are off to a great start!!!

Lunch - He & his cousin split a can of Chef Boyardee Whole Grain Mini ABC's & 123's with Meatballs. Again, this is something that he typically will eat but this time I bought the whole grain option. It does have more fiber, and they also claim that there is a full serving of vegetables in every bowl....so there are some veggies this meal. He doesn't eat much of it...maybe 1/4 of a can, but it also mixed with our new fruit snacks. If he takes 2 bites, then he gets a fruit snack. When he tells me, "All done"....then I don't push it anymore.

Snack - For snack today, I simply pulled out the Phineas and Ferb Summer Punch / Perry Punch GoGurt box...and all of the kids went nuts! They were ALL so excited! Ethan kept saying, "This one? This one?" It was awesome! So....all 3 kiddos had a GoGurt. Ethan had four tiny bites before saying all done. I'm calling this one a success!!! 4 bites of yogurt is HUGE!!!! Thank you Phineas and Ferb!!!! He also had his Goldfish as well.

Dinner - Tonight we had tacos for dinner. We have tried to give Ethan tacos before, but he always ended up gagging & asking if he could, "Pleh." So, tonight, I just put some of the taco meat in a bowl...with a bit of ketchup. He took SEVERAL bites of it without me having to ask him to take another bite....he did it all on his own! This is PROTEIN! And we use ground turkey instead of ground beef....so this was REALLY amazing! Shortly after dinner, however, he did ask for a Pop-Tart. And I gave him his request. I felt like he had tried a TON of new things & done very well, so he could still have his beloved Pop-Tarts. So, he ate these while we went on a bike ride.

Another Snack - Later in the evening, he asked for his chicken nuggets. Then he asked for fruit snacks. When I asked him if he was hungry, he said yes. So, I cut up a a banana, placed it on toothpicks & gave it to him along with his old fruit snacks. He ate is all & asked for more....and I obliged.

So, all in all, a VERY good day...eating-wise. No pressure...just try it & see. Oh....he was interested in the watermelon that I had cut up today, and he tried a bite. However, he just held it in his cheek for about 5 minutes & then spit it out. Maybe we aren't ready for watermelon, but that's alright. His diet today was sooooo much better than a typical day. Not all bread & a lot more nutrients. I'm a super excited mama!!!! Tomorrow we will try......smoothies!!!!

Ethan's Eating

I have mentioned before that a common thread among kiddos with ASD is becoming a "picky eater"...and my Ethan is no exception in this area.

"No one really knows why so many children with autism are picky eaters," says Kimberly Kroeger-Geoppinger, an assistant pediatrics professor at the Cincinnati Children's Hospital Medical Center. "But there's no doubt that it's a common phenomenon. That means that parents' permissiveness is probably not the cause." Kroeger says there are several possible reasons for autistic children's pickiness. "We know that children with autism tend to select down, eliminating one food from their diet at a time. The reasons could be sensory (a new discomfort with a particular smell, taste or feel), or even a randomly developed routine."  
http://autism.about.com/od/childrenandautism/ss/howtofeed.htm

This is becoming more & more frustrating as I see my son basically eating bread all day long & getting no nutritional value into his body. He does take children's vitamins each day to help combat his lack of a balanced diet, but I just don't think it's enough.

Here is what Ethan' typically eats at each meal:

Breakfast - Bacon (always) with cereal or Pop-tart. He does enjoy pancakes & cinnamon rolls as well.

Lunch - Chicken nuggets, fries/chips, & fruit snacks

Dinner - Popcorn or pizza or chicken nuggets & fries/chips

Snacks - Goldfish, animal crackers, sugary cereal bars

That's it. I have tried & tried to get him to eat different things, but he would just refuse to eat. At that point, I became so desperate that I just wanted him to eat ANYTHING! Well, for the past month, I have started putting a new food on Ethan's plate even though he wasn't eating it. I would encourage him to take a bit, but he would usually just put it up to his lips for a lick & then say "All done." However, in the past week, Ethan has started eating a banana (cut up with toothpicks in them...he doesn't like the feel of the banana) as well as natural applesauce. He will also eat a few bites of the dinner that Corey & I were eating if I chopped it all up, mixed it together & smothered it with ketchup. I'm not really sure how healthy that is, but he was definitely getting a variety of foods that way.

So, realizing that I needed help in this area, I talked to my husband about this issue. He & Ethan have pretty much the same likes & dislikes as far as food goes, so I "interviewed" my husband to see what kinds of fruits, vegetables, protein, and dairy foods he enjoys. The list is short, but I feel like it's a good place to start. So....here is my new plan.

Corey & I went to the grocery store last night. Grandma Linda asked to take Ethan on a date, so we thought this would be the perfect chance to go & browse for some Ethan groceries. These are several of the things that we bought. Some of them are to replace his existing foods. Oatmeal to Go is going to replace his breakfast Pop-Tarts. He has eaten these at my sister's house, so I think that switch should go smoothly. We also bought some additional fruit for me to put on toothpicks. These are fruits that Corey likes, so I'm hoping Ethan will like them too. Yes, some of them are in heavy syrup, but my opinion is that is better than no fruit at all. We bought some other things to try....smoothies, yogurt...to increase his protein intake. And since Ethan LOVES to drink, I bought V8's drink that contains fruits & veggies.

Not pictured: I bought pretzels to replace his chips, stuff to make grilled cheese (I'm hoping to make them look similar to the french toast sticks), and fruit snacks where the 1st ingredient listed isn't 'corn syrup'. I also already have apples, grapes & strawberries that I will be trying on a toothpick. We also bought canned corn & canned peas. Corey says these are the only veggies that he himself likes....I still count them as breads, but I'm willing to try it. We bought canned instead of frozen because we thought the smell/taste wouldn't be as strong. Plus, Ethan loves salty stuff & canned has a lot of salt.

So, we have lots of new things to try. The plan is to switch the old food with a similar new food....a little bit at a time. I'm hoping that some things he likes right away while others he will tolerant just licking. The goal is to help Ethan have a well-rounded diet, so hopefully he will like SOMETHING! I honestly am still THRILLED that he has eaten 2 bananas this week!!! THAT IS HUGE!!!! WOO-HOO!!!

Ethan all dressed up for his date with Grandma! She took him to Wendy's (his new favorite place) & Menard's.

Ethan & Grandma Linda...ready for their date!!!

An Attitude Change

Well, since I gave my blog an overall....I think it's only appropriate that I give my attitude one as well. And this weekend, I tried my best to begin asking my husband for help & lightening the load of being Ethan's main caretaker. Here's how it went......

It was a GREAT WEEKEND!!!! Friday night, we went to my eldest nephew's birthday party. This was a chance for me to explain to Corey what the team & I have been working on with Ethan as far as his social skills. I told him the goal is for Ethan to interact with as many people as possible (preferably his peers), to use his words, and to model appropriate play (no pushing or hitting). OUR plan was to give Ethan as much space as needed, and only intercede if needed.....which I told Corey meant a dangerous situation or inappropriate behavior. Because of past meltdowns that have occurred with Ethan, Corey is very anxious taking Ethan into social settings. In the past, Corey has followed Ethan around at these things in order to protect him from possible triggers. So, this was a good chance for me to tell/show Corey what I have been told/shown as well as for Corey to try it out himself. And, it went GREAT! Corey was able to relax, and enjoy the company of our family & friends. Ethan had a blast as well. He & his two 2-year old cousins were running in a circle pattern through the kitchen, dining room, entry way, and sitting room. They were laughing & squealing....and it was awesome. During the singing of the Happy Birthday Song (a big trigger for Ethan), my husband usually takes Ethan out of the room. However, this time.....Corey was having such a good time that it was actually me who took Ethan out of the room! I was so proud of him...he was relaxed too!!!! It was a perfect evening. Ethan interacted with his peers, Corey was less anxious & didn't follow Ethan's every move, and I was able to see that I can trust Corey to follow through on what I tell/show him we are working on with Ethan. It was awesome!

On Saturday, we participated in AMC's Sensory Friendly Films and went to see The Lorax in the theater. As we were preparing to get ready to go to the movies, I could feel myself becoming overwhelmed. I needed to not only feed & dress my child (and myself), but I also needed to pack a sensory diet bag & do some OT with Ethan before we went out the door. Corey was helping out by working on my blog, so I didn't want to bother him. But then I realized....this is why I am getting upset with him. Poor guy. So, I opened my mouth & asked for help! YEAH, I DID IT!! :0) So, as I prepared the Sensory Survival Bag, Corey did OT with Ethan. It was awesome.

Ethan's Sensory Survival Kit, Sound softening headphones, and Ethan's weighted lap pad that I made for him.

The contents of Ethan's Survival Kit. Some fidget toys, some things to bit/chew on, a slow-color changing snowman, & bubbles. I also put Twizzlers in my purse...a pulling candy.

And Ethan made it through the entire movie! After about 10 minutes into the movie, I even switched seats with my husband so they could sit together! It is either habit or my nature to be the caretaker for Ethan, so it just made sense for me to sit by him. (His Grandma was on the other side of him.) But it was great being able to sit back, relax & enjoy a movie. And that movie was adorable!!!!

After the movie, lunch & nap time, we all went grocery shopping....together! Then, we came home, ate dinner, and then went back out to do some shopping. On Sunday, we usually go to church, but the daylights savings time change threw Ethan's sleep off, so we didn't make it. :0( Today, however, we decided to skip Ethan's nap in order to help get him back on his sleep schedule. So, we went to Peoria for some shopping. Here is what we bought!

Ethan in his new pull-behind bike trailer!

Biking is something that we LOVE to do as a family. For the last 2 years we have been borrowing my sister's pull-behind trailer, so we decided to buy one of our own...and return the borrowed one to it's owner! Ethan loves to ride in this.....I think it gives him a similar sensation as swinging on a swing. Plus, the fresh air is good for him.....and the exercise is good for us!

It was a very nice & relaxing weekend. I am learning to ask for help as well as take care of myself. I feel better....less stressed, less overwhelmed, and less alone. I'm not saying I won't ever revert back into my old ways, but I'm going by the motto practice makes perfect. The more I ask, the better I'll be at it, right???

"Unless someone like you cares a whole awful lot, nothing is going to get better. It's not." -Dr. Seuss

At the end of The Lorax movie, this quote was place on the screen. Of course, I cried. And for a moment, I felt as if me asking for help was telling myself that I didn't care as much. But, that's not the case. I still care a "whole awful lot", but it's too much for one person to do alone. And Ethan is very fortunate that his dad and our entire family care a "whole awful lot"......and so am I.

Morning Therapy

Ethan has been having more & more difficulty pushing kids down at school. I am seeing this behavior in our home life as well. So, I thought maybe we should try switching up our morning OT routine to include more heavy work. Maybe he is pushing kids to provide that sensory input that he is needing/missing. But how to do this for Ethan when I have my nephew & niece in the mornings too??? A GAME!

So, here is the new game (OT) that Corey & I came up with to do in the mornings! I had the idea....and Corey made it fun. He is very good at that. Corey played the game with Ethan while I prepared breakfast & laid out Ethan's clothes. It was so nice being able to share these responsibilities with Corey.

Here is Ethan & Daddy ready to start the game. Ethan is in a swivel chair on wheels that is covered with the weighted blanket that I made him. He also has his weighted lizard across his lap (purchased at Dr. Temple Grandin's conference)...it was the "seat belt."

We placed tape on the floor...a starting line (under the chair), a race line (also going to be our balance beam), and an finish line at the other end of our hallway. Ethan says, "Ready, Set, Go!" and Corey pushes him fast down the hallway...that's why the picture is blurry.

At the finish line (the end of the hallway), Ethan crawls off the chair & pushes it back to the start line. This is the heavy work that he really needs. Not only is the chair weighted with the blanket & lizard, but the fact that is swivels makes it a bit more challenging & helps him use both hands. Ethan loved playing this game!

Daddy & Ethan doing morning therapy....a beautiful thing!

Go, Ethan, Go!

And ready to do it again!!!

We will see if this works as far as pushing other kids down, but we noticed a difference on the 1st day we did this game. He was much more calm & able to sit longer. I think this will be a game that we play for awhile. In fact, this morning I did this game with all 3 of the kids, and they loved it! HOORAY!

***Update! I forgot to ask his teacher to see if she saw any improvement in Ethan's pushing, but Ethan's speech therapist told me that Ethan was answering more questions for her this morning! And I didn't even ask if she saw an improvement....she just told me! YEAH!!!!

A New Look

Recently, I have been playing around with a new look for my blog. I was even all ready to contact someone to design it for me. And then.....

I contacted my amazingly talented cousin, Jenny (who is more like a sister). She is an amazing artist, and can pretty much do anything. Not only does she do graphic/media work as her career, but she is also currently working on illustrating a couple of children's book as well as many other projects. One of her books is about a goat who faints at loud sounds....remind you of anyone??? Jenny has been very proactive in learning about autism as well as sensory processing disorder, and is a regular reader of this blog. She really is an all around amazing person. Check out her many projects at her blog, http://jennycorleyillustration.blogspot.com/.

I asked her if she would like to be interested in designing an image for my blog, and she went all out! Here is her beautiful artwork!!!

In the next few days, some changes will be happening, design-wise, to this blog....built around this image. I am soooo thankful to my talented cousin for creating such a one of a kind piece. She is currently in the process of getting her own website up & running where she will provide personalized images, similar to this one. LoveYoMug.com won't be live for many many weeks, possibly around a month, so check it out soon!!!!

THANK YOU JENNY!

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)

Glow Stick Math

Ever since we introduced glow sticks to bath time, it is the ONLY bath toy that Ethan wants during his baths. Even though I found this idea at PlayAtHomeMom3.blogspot.com, my husband is the one who actually carries out the activities. 99% of the time, Corey is the one giving Ethan his bath, so I can have a mini-break....although it's usually filled with cleaning up or getting ready for the next day. So, a couple of nights ago, I hear Ethan's voice from the bathroom, "All together!"

I hear it over & over again, so I sneak in to see what creative game my husband has come up with this time. When I walk in, this is what I see.....

Ethan had grouped his items into categories. They are working on this skill at school. He was also adding the groups in different ways. So, he would count the straight glow sticks, and then count the cubes. Finally he would say, "10! 10 all together!" in his really excited voice. He was doing this game over & over again...and LOVING it! Corey also said that earlier in the bath, Ethan was making patterns with all three of these items. Circle, cube, stick, circle, cube stick, etc.

Last night, I could hear a discussion from the bathroom about, "What else can helpful hands do?" Recently, we have been having issues with Ethan pushing kids until they fall down, and we talk A LOT about using "helpful hands, not hurting hands." So, apparently, last night's new bath game was all about things our helpful hands can do....including playing with glow sticks. When Ethan came out of the bathroom, he said to me, "Helpful hands can play with toys!".......as he wanted to keep playing & not go to bed. Sneaky, sneaky!!!! So, I asked him if helpful hands can pick out the books to be read before we go to bed. I can be sneaky, too!

I LOVE that he has the ability to "generalize"....or to take what he is learning in one area and apply it to all other areas. For example, he is learning about patterns, adding concepts, and grouping like items at school, and he carries that over in his play. He will even count the family members at various times....at the dinner table, playing outside, in the van, etc. This is an EXCELLENT skill that he possesses, and Ethan really is blessed to have this ability. This skill will greatly help him in overcoming the challenges he faces regarding autism. So, in the words of Ethan, "Dad, Mom & Ethan! Three all together!" And even though he is doing math, this one makes me teary every time he says it. I am so lucky that we are "Three all together." Ethan, you've said it perfectly.