Sunday, August 28, 2011

The Caterpillar and the Polliwog

Ethan is obsessive, to say the least. Once he falls in love with something, he wants to see it/play it/hear it/watch it over & over & over again. Lately, he has been obsessed with one of my old Scholastic DVDs. This dvd is a collection of a bunch of storybooks that have been animated for video. This particular video that I have heard him watch over & over again includes the story, The Caterpillar and the Polliwog by Jack Kent. It's a story "about a caterpillar who feels very special because she knows that one day she will become a beautiful butterfly. The caterpillar is so proud of this that she tells all of her animal friends about her special capability."

This story got me thinking about how living with autism is similar to this story. It wasn't that long ago that our house was filled with a couple of caterpillars. Corey, Ethan & I were very happy caterpillars...just walking through life...enjoying our view from the ground. Our feet were solidly planted on the earth, we were sheltered from the heat by the plants & protected from predators by the thick grass. Life was simple, certain, and secure. Then one day things changed. Metamorphosis happened....or is happening. In our tiny cocoon of autism, we often feel all alone in the world, awkward in our transitioning body, scared of our new environment, and unsure of what is going to happen next.

BUT! I must remember that, just like the caterpillar in our story, we too will soon emerge as beautiful butterflies. Our perspective on life will change. We will have the advantage of remembering the old life yet learning from our new point of view. We will have a new that can perch on a blade of grass OR fly above meadows. We will regain our social filled with new friends that we would have never met as caterpillars. We can dance in the rain instead of swimming in it's puddles. And although we won't be as safe & secure as we were before under the shelter of the world's greenery, we will be able to fly around the world! And that is pretty cool!!!!!

So, my dear friends, please tell anyone you can about Ethan & his story. Because, just like the caterpillar, we too are so proud of him and his special capability.

Tuesday, August 23, 2011

Where to Draw the Line?

Lately, I have really been struggling with something. As a mother of a child with autism, I have had to develop "thick skin" so to speak. People often say things that are hurtful or unkind about Ethan's behavior.....mostly out of earshot....but sometimes directly to me. And MOST of the time, these people are coming from a genuine place of concern & desire to help. And MOST of the time, I am able to get past the sting of their words to hear what they are trying to say to me. MOST of the time it's words of support, such as.....

All kids have trouble with ____(fill in the blank)_____.
In 10 years, this won't be a problem anymore.
Sorry to hear about Ethan.
You are doing great at taking a bad situation & turning it into something good.
Ethan's (sensory) issues limit his activities, so don't stress about trying to involve him in them.
BUT he's so smart!
I wish my kid had autism.

I could go on, but these are things that have been said to me in the last couple of weeks....fresh ones. People have good intentions, and I try to hear what they are saying & not HOW they are saying it. But, I'll be honest, I do struggle with this.

On one hand, I am so THANKFUL that people feel like they can say what is on their heart/mind. I don't want that to stop! I'm glad there is a comfortableness.....and I'm glad people don't shy away from talking about Ethan or his autism with me. I could talk about my son forever! Just try me! HA! AND, being the stay-at-home mom of an only child who happens to have autism is already a very isolated life. I don't want to ruin the adult relationships that I have managed to maintain. AND, if I become too sensitive to the non-special needs community's words, then how will I be able to maintain a dialog & promote understanding?! And herein lies my dilemma.

How do I handle these statements? These "supportive" comments? Because, right now, all I do is continue on with my conversation & then come home in tears/anger/both, and my poor husband gets to deal with me. Thank goodness he's really good at talking me down off the ledge! HA!

Thankfully, I do have a great family......a large family.......that are very supportive & wonderful about being open & honest without offending. And this is a blessing. I also have a great group of close girl friends who have the talent of keeping things real, & yet I leave their presence being encourage & not discouraged.....and Corey has the same. And we have a great church family that love us with all their hearts. I really don't know how I would be able to deal with negativity in my life without these wonderful positive people.

For example, something happened this Sunday at church that was out of our "normal" routine. It had already been a rough morning for Ethan because Corey & I had to drive separate due to a meeting I had after church. Then, when we got to church, the air conditioning unit (that is right next to the entrance we usually use) was making a very loud humming sound. And, if you remember the sensory chart I talked about previously, these 2 incidents close together were causing Ethan to climb the chart into the overload range. Then something happened at the check-in point with paperwork mix up, and we were told that he needed to go to another class...which would mean other activity that was out of routine. I began internally panicking because I knew that Ethan was going to have a major meltdown if we didn't "fix" things quickly. Then, I locked eyes with one of my amazing girl friends. She could see it. I didn't have to say a word, but she knew......thank you God for putting her there! She said just the right thing at just the right time, and we were able to move passed the potential meltdown..for me & Ethan. (We broke the rules & put Ethan in the class anyway......shhhhh.....don't tell!) And, thankfully, I have lots of stories like this...maybe they even outweigh the negative stories. this has helped me work through a little bit of my struggle. I think I'm going to start a page on this blog. Our stories of encouragement from others. And when those stinging comments pierce through my growing thick skin, I will be able to reflect on the positive stories, the positive comments, the positive people God has placed in our life. I'm sure Corey will be glad, too.....less mommy meltdowns!

Startling Statistics

Last night, I was doing some research on Special Needs Ministries of different churches. Through this research, I came across some statistics that amazed me....

  • 7% of children ages 3 – 17 have ADHD.  11% of boys, 4% of girl

  • 8% of children ages 3 – 17 have a learning disability.  10% boys, 6% girls

  • 10% of children have an anxiety disorder

  • 13% of children ages 13 – 17 have a developmental disability (ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism)

  • 41% of children with a developmental disability have multiple disabilities

  • 17% of Americans will experience a communication disorder at some point in their life, which includes sensing, interpreting and responding (i.e. auditory processing disorder).

  • 1 in 110 children have an autism spectrum disorder.  1/70 boys, 1/315 girls

  • 1.6 % of children will receive an ASD (autism spectrum disorder) diagnosis at some point in their lives.  2.6% boys.

  • 37.5% of individuals who receive an ASD diagnosis will go on to lose that diagnosis.

  • 41% of people with an autism spectrum disorder have an intellectual disability (which means that 59% do not necessarily have an intellectual disability).

  • 19% of Americans are classified as a person with a disability, which equals the population of the states of FL and CA combined.   Both the number and percentage of Americans with a disability has risen in recent years.  

And the one that really got to me was that "many studies do point out higher divorce rates; for families with children with autism, there have been rates quoted as high as 85-90 percent."

These are much higher numbers than I thought, and this is information gathered from last year. Are you as surprised as me???

Monday, August 22, 2011

This Week's Mantra

We sang this song in church yesterday. It is a song that we sing often, but yesterday, as I was trying to overcome another difficult Sunday at church, this really resonated with me. I've been singing it ever since.

Dependence - Chorus Only
by Jamie Slocum 2008

Just to know, just to know that you love me
It gives me hope to carry on
You're the one thing that I can turn to
Just to know, just to know that you're with me
On all these roads I traveled on
You're the one thing that I can turn to
Just to know, just to know that you love me
It gives me hope to carry on
There's nothing this world can do
I confess my dependence on you
Lord, I confess my dependence on you
Dependence on you

Friday, August 19, 2011

Best Lunch Ever!

Today was my first day providing daycare for 2 other children. My main reason for wanting to do this was because I think Ethan would benefit from spending more time with other kids......and we can work on his social skills. I know this will be an adjustment for him, but I just know it will be so beneficial in the long run. And you'll never believe it, but I already started seeing an improvement in his conversational skills. Amazing.

First, let me describe Ethan's speech. His actual diction is very clear. He doesn't have any trouble saying words clearly. His difficulty is creating "spontaneous" speech. He excels in what they call "rote response". An example of a rote response is this: "See you later, Alligator!"..........the rote response is.........."After while, Crocodile!" My current speech goal as his mom is to stock pile his vocabulary with canned phrases. Things like, "Hi, Goodbye, How are you? I'm good. I love you, Ethan. I love you too Mom. Please? Thank you. You're welcome"....and so on. He doesn't understand how a conversation works....the turn taking that is involved & creating new thoughts/phrases. (PS...they told me to do games with him that involved turn taking such a rolling a ball back & forth or doing board games & this would help him understand turn taking in a conversation. I have done that 'til I'm blue in the face, and he still doesn't understand turn taking in a conversation.....only in rolling a ball & board games. Anyway....) I am also working with him on understanding emotions....which is a difficult concept for most kids with autism. I have a couple of funny stories on that topic, but that's for another day.

My point is that at this point in his speech development, I'm rarely sure of what is spontaneous & what is rote response. I'm never quite sure if he understands what he is saying or if it just becoming a reflex. And that is difficult for me to deal with everyday because I want to communicate with him so much, but he just doesn't have the tools to do so just yet. I desperately want to know what he is thinking or feeling not just what he wants like food or a drink or help with a puzzle. But today.............(happy tears) I saw the start of a spontaneous conversation. Something I have NEVER experienced with Ethan.

As we were eating lunch, I was trying to keep the kids sitting at the table as long as we played what I call The Favorite Game.......I really strained myself coming up with a title to this game, didn't I? Anyway, I just ask a TON of questions & the kids answer. But this is usually a harder game for younger kids because they love EVERY cartoon and EVERY fast food restaurant with a toy in their bag and EVERY toy they play to pick one is challenging. So, I begin with the oldest child who is almost 5 years old. "What's your favorite color? BLACK.....WELL ACTUALLY, I LIKE WHITE & GREEN & RED & THE COLOR OF MY BOLOGNA & BLACK." I love kids! Then I turn to Ethan, really only expecting him to tell me a color because I have said the word "color" in my question. In his mind, he recognizes the word "color" in the form of a question, so answering me with any color is the correct response.....a rote answer. So when he is asked the question, he answers "blue".....and I note that this is the color of his outfit. That's typical response from Ethan. Then I ask the eldest, "What is your favorite song to sing? HERE YELLER, COME BACK, YELLER, BEST DOG-GONE DOG IN THE WEST!" (he sings it for me). This of course makes me laugh. Then, I turn to Ethan and ask the same question. And he says The Wheels on the Bus. RED FLAG! HOLD THE PHONE! I NEVER sing that song! This is not something that is a rote response but something that he is actually thinking about....a song he likes!? Does he understand what favorite means????

But I keep my excitement under control and continue with this brilliant game. And every question that I am asking Ethan, he is responding to not only "correctly" by giving me an answer from the category, but answers that I know to be his favorites! Toy = Cars. Cartoon = Mickey Mouse Clubhouse. Food = Chips. Movie = Cars2. And on & on & on. Yes all of these answers are in the right category so it could look like rote response. BUT!!!!!! I know my child, and I know that these things ARE his favorites in each category! Are we actually having a spontaneous conversation?!!!!!! YES WE ARE!!!!!!!!!! HALLELUJAH!!!!!!!!

Oh man....if this is happening on day one.....I can't imagine where he is going to be in week or a month or.......

One of our friends, who has a child with autism, told Corey that he thought Ethan would be able to work through a lot of his struggles early-on so that by the time he was in first grade, no one would know he has autism. And, honestly, when Corey told me that, I thought, "Yeah Right!" But now......I'm beginning to think it might be a possibility. Every step with Ethan has been hard work. Not only on our parts as his parents, but on his part as well. But I think he's gonna get it, folks! I think he's gonna get it. What a great gift I was given today. I spontaneously communicated with my child!!! Best lunch ever.

Thursday, August 18, 2011

Stress Busters!

We have got SO much going on lately! Buying/selling cars, starting a new job, starting a new school year, getting involved in expanding our special needs ministry at church......YOWZA!!!!!

So...I am going to be relying on my stressbusters to get me through it! Here they are.....

1. PRAYER!!!!!

2. Exercise - I've recently started doing Jazzercize, and I LOVE it. It combines my love of dancing with great music. I also enjoy going on walks when the weather is really nice.

3. Music - I LOVE music. Occasionally I will latch on to a song that gets me out of my bad mood & instantly puts a smile on my face. Right now, my go to song is Tonight Tonight by Hot Chelle Rae.

4. Going out - Either with my friends or my hubby. I am constantly using that line from Happy Gilmore....the older lady living in the retirement home....."Get me outta here!"

5. Cleaning - OK....I know this seems random, but it really does help get rid of all that anxious energy. Corey always says he's so glad when the house is a mess because he knows I'm not!

6. Blogging! - Yep...this is really my free therapy!

7. Having a cup (or two) of coffee while reading magazines, catalogs, or doing Sudoku!

Ahhhhhhh.....I already feel relaxed just thinking about time to tackle some more things on the to-do list! What do you do to relax?

Tuesday, August 16, 2011

My New Ride

In a few days, I will begin providing daycare for 2 other children besides my own. So, I will have 3 kiddos with car seats....and my current car does not provide adequate space for three children & all their stuff. We have been looking at minivans for a couple of weeks, and today we purchased a used but great one! YEA!

My husband designs & cuts custom vinyl decals, and I have been asking him to put a few cute things on my car. that I have a nice car...I mean took about 45 minutes for him to put them on my new ride.

It was such a beautiful evening, so Ethan & I played while Corey played with the new minivan. Here are a few pictures.... 

We had a great day today! I'm really going to miss spending all day with Ethan, but I know he is going to LOVE going to school. And it will be good for both of us. But until then....we are soaking up the rest of our summer!

Monday, August 15, 2011

Funny Shirts

Having a child with autism has given me membership into a club....mothers of special needs kiddos. It's not a club I was really very knowledgeable before I had Ethan.....even with my teacher training & experience. And it's not a club I ever really wanted to join, but now that I have.....I don't ever want to leave it! I love being Ethan's mom & learning all kinds of things that have to do with him as well as autism. And now I want others to know about our club as well. So, I was looking online for some sort of jewelry or bumper sticker to promote and make others aware of this awesome club. And I found some pretty funny shirts! Here are a few...

Autism is my super power!

I don't talk much because I'm busy thinking.

Autism....see the world from a different angle.

Keep staring at me & we may cure my autism. Then we can work on YOUR social skills.

God made me special....autism awareness.

Autism is not contagious.

Yes, I'm autistic. Stare if you must....I'm not paying attention to you anyway! (This one cracks me up!)

I have autism, and I'm amazing!

Autistic today......genius tomorrow!

Ask my mom about my autism. She'd be happy to explain it to you!

Volume control? Sorry, I didn't come with that option!

Autism Rocks! (and spins and flaps and......)

Autism Shmautism.....he's just my brother.

Favorite Autistics......Leonardo DaVinci, Thomas Edison, Albert Einstein, Michelangelo, and ME!


Thursday, August 11, 2011

Weighted Blanket

For awhile now, I have been wanting to make Ethan a weighted blanket to sleep with since he has been responding so well to weighed objects in his daily life.....lap animals, kid sandwich, yoga ball exercises, joint compression, etc.  But, like most therapy items, it WAY more money than I want to spend. And they seem really complicated to make. So, I haven't done anything about getting Ethan one.....until now.

A couple of weeks ago, Ethan stopped using his pacifier at nap & bedtime....the only 2 remaining times he would still use one. And, as I have shared before, we allowed him those 2 times because oral chew toys & such seem to calm him. And he needs his nap.......and I need him to nap as well. He is so much more difficult when he is tired, and I do enjoy getting a break too. So for the last several weeks, Ethan hasn't been sleeping well. No napping, going to sleep late, and waking early. is time to get serious about a weighted blanket.

I looked up a few websites that I was told would have cheaper prices on these blankets, but they were still more than I wanted to spend. Especially since this was a trial run. We didn't know for sure if this blanket would even help. Here's an example of such a Ethan's occupational therapist told us that Ethan could use a 5 lb blanket...more weight than usually recommended for a child his age. However, I have already added dried rice to the inside of a few of his stuffed animals to make them heavier, and they were about 3 pounds each. Since he craves those items, she said he would benefit from a little more weight in his blanket than standard. Standard measurement is 10% of his body weight + one. So, at the time of his OT sessions, he weighed 31 pounds. Do the math & that would mean Ethan would need a 4 pound blanket. Ethan is currently 36 pounds, but we made the blanket 5 pounds....due to the OT's suggestion. That could cost us anywhere from $50 for a little baby blanket to $120 for a twin size. And this is actually pretty reasonable. But then I thought those 4 words that we all think sometime in our life...."I could make that."

So, I found a easy to follow pattern I already had CARS fabric that a friend gave me over a year was her leftovers from making her son curtains. So my measurements weren't exactly like the pattern, but I was only 1.5 inches short.....still plenty big for Ethan.  So here is what it looked like after I sewed around 3 sides & stitched the columns...ready to be filled with weights.

Now, there are many different options for weights....dried rice, beans, sand.....but I choose to use Recycled Poly Pellets. If his blanket needs washing, it can be thrown in the washer & dryer (on gentle). I did have to purchase these pellets, so I went to EBay. I bought 10 pounds for $ added cost but still cheaper than buying one already made.

These are very light weight & surprisingly soft. I measured out 10 cups (5 pounds), and divided them into 64 tiny cups.....for the 64 squares on my blanket. Originally, I was dumping the pellets into the sewn columns & then shaking the blanket to get them to all trickle down to the bottom...but they were sticking. So, I went & got a role of wrapping paper to use as a funnel.
That worked much better! After I would dump 8 cups into each of my 8 columns, I would sew a line across that section....making my columns into squares. And I only spilled the pellets one time!!!

Well, I finished the blanket in one day. It was a LOT easier than I thought, so now I'm already thinking about making Ethan some lap pads & another blanket. Eventually, I will show you the end product, but there is a little boy in the other room who is using it to take his nap.......YEA!!!!!!!

***UPDATE*** Here's a picture of the final result. I am thinking that I may want to add a trim around the edges, but just for an added element.

Tuesday, August 9, 2011

Temple Grandin - Different Not Less

A couple of weeks ago, Corey & I watched a movie about a woman who has autism. Her name is Temple Grandin. Here is the trailer to the movie.

It was an amazing movie, and it has allowed us to understand Ethan a little better. For example, Temple talks about how she thinks in pictures & then connects them. This has helped us teaching Ethan about WAITING.

Ethan has a difficult time with WAITING. If we are in the grocery store & the cart stops, he starts to get anxious & upset. If we are sitting in a drive thru, the same reaction. If we put his shoes on & don't leave the house right away, he begins to panic. These are just a few examples. Well, the other day, Ethan & I were waiting in line at the grocery store, and he started to get upset. We had just watched the Temple Grandin movie, so I was quickly trying to think of a picture of waiting that Ethan would already have in his mind. GOT IT! A traffic light!

When we are driving in the car, Ethan will point out all kinds of logos. So on our drive to the grocery store, it goes a little something like this......"We go to Kroger? Yes! Turn left. Turn right. Go straight. I see a Walgreens. Taco Bell. Pizza Hut. Red light, Stop! Green light, GO! Go straight. I see a Monical's. Turn left. I see a Aldi's. I see a Kroger. I would like to go to Kroger. Turn right."

Each phrase is usually repeated over & over again until we acknowledge his request or his request has been completed. He's only 3 years old, and we already have a back seat driver!!!! And if we decide to take a different route, there's a good chance he won't like it...but that seems to be getting better.

So, anyway, back to the waiting. As Ethan's panicking about waiting in line at the grocery store, I say to him, "Yellow Light means.........", and he says to me, "WAIT!" Then I proceed to teach him about waiting our turn, just like sitting at a traffic light. And he was fine the rest of the time in line! And I have used that several times since then, and every time he calms right down. YEAH!!!!!

And this is why I read all I can, take as many classes as I can (we are going to see Temple & her mother speak in Chicago this September! YEAH!), talk to as many people as I can about special needs, mainly autism. Because not everything works. Each child is different, and what works with one child, doesn't work with another child. But, with Ethan, once he understands something......once something works.....he is able to carry it throughout every situation. So will I continue to be obsessed with learning about autism????? Green light means...........................

Sunday, August 7, 2011

Celebration Sunday

This week has been INSANELY busy. Our church had Vacation Bible School (of which I helped), I registered Ethan for school (YIKES!), we helped my Brother-In-Law & his family paint their new home, and we had an all church party at our local water park. I am so tired. Through the craziness of this week, we have had a lot of low moments in this house. First, deciding that Ethan was unable to handle going to VBS while I still was helping & watching his peers learn about Jesus. That was very hard for me. Second, Ethan went to the doctor, and we discovered that he had an eye infection, an ear infection, and strep throat. It's a good thing Ethan takes his medicine well because he has been taking a lot of it this week! Third, things were said to me this week about another child with autism that offended me deeply. I am still trying to work on my reaction to ignorant people. That's not even the right word because I didn't know any better before we had Ethan, and I would never say such things about a child. Insensitive people. But that's a whole different topic. And, finally, signing my baby up for daily preschool. I wouldn't be putting him in preschool so soon, but because of his autism, I feel it is crucial for his future to continue his intervention program...which means going to school.

But, has been a wonderful day! During church this morning, I could think of nothing else besides Ethan's growing need for support/aids....specifically at church. The last couple of Sundays I have gone home in tears..........vowing to find a new church...............a church that had a special needs program. But then I remember how much I love our church & the people. They are our family......and most of them literally are our family! Where else would Ethan find that much love? Nowhere. And I don't WANT to leave our is my home. And, besides, had I talked to anyone about my concerns? About Ethan's needs? About my heartbreak? About my embarrassment? About our frustration? No to all. I keep it inside, playing like it is all okay, and come home in tears. How is anyone supposed to help unless they know there is a need?

OK...I decided I needed to talk to someone at church about getting Ethan support/aids at church. But who? Everyone already has such a full plate! And I don't want to single my child out anymore than he already is. It would be so much easier if we just stopped going. But that won't do Ethan any just run from difficult situations.

Then, it hit me like a bolt of lightening. I am not the only parent of a special needs child. And if I am feeling that way, so are others. So I have been in touch with our lead pastor & our children's pastor, and we are starting a dialog. We are going to talk about these issues & how we can help these special families & these kiddos. And I have volunteered to be the coordinator. I can be the person a parent can come to! I understand! I know what they are feeling! And, as a former teacher, I have the best of both worlds....resourceful educator & passionate mama!

So, today, I am celebrating the beginning of overcoming an obstacle. Not only for Ethan & us, but for other families as well. It's not a lot, but it's a start. And I am so excited for this start....for this opportunity....for this chance of change. And tonight our congregation celebrated the end of our VBS, the week-long program that my child was unable to participate in due to his sensory issues. But Ethan was at the celebration. Our church rented the local water park, and Ethan was able to participate. And we had a great time & celebrated. But for us, it was not only because we had a successful VBS..........but because maybe next time.........maybe next time........there will be MORE children with special needs there...........including Ethan. And THAT is reason to celebrate. What a great day!!!!!

Thursday, August 4, 2011

An Emergency Hospital Trip - by Corey (Ethan's Dad)

This week I have been at our church's Vacation Bible School every night. On Tuesday night when I came home, this is what Corey shared with me about his evening with Corey's own words......

OK so last night was a little rough. Ethan had already been sick for a few days. His nose has been running and he has been sneezing. Two nights ago I noticed his eyes had some goop in them. Last night I noticed his eyes were looking kind of pink. I just figure he is fighting some bug he picked up from church or family, no big deal. Well, then Ethan starts to kind of whimper and whine to me. I noticed it was about dinner time so I start to make us something to eat. Ethan comes in crying and pulling on his right ear and says. "You bonks your ear." So I thought he must have hit his ear on something. I kiss his ear and he says, "All better," and walks away. He comes back into the kitchen a few minutes later, "You bonks your ear," and this time he is crying a little. So I sit down with him in the rocking chair and comfort him. He just lays back and relaxes on me. Now keep in mind Ethan doesn't usually do this. The only times Ethan will sit and cuddle while you rock with him is when he is tired or sick and feeling really rough. So we are rocking and while Ethan is sick and feeling like garbage, I am secretly enjoying the time I get to rock and comfort him. Then Ethan tells me "You bonks your ear." Finally it clicks with me..he is telling me his ear hurts...DUH! So I get his ear drops from when he had tubes put in his ears and lay him on my lap. I put in 2 drops. He starts crying REALLY hard and pulling on his ear. So, worried that I just made my son deaf in one ear, I call the doctor's after hours call center. I explain all of the symptoms/time line, and they said, "We can get him in at 7:45pm." It is 6:45pm right now. So I start packing a bag for Ethan (cereal bar, chewing items, toys, drink, etc.), and preparing for the trip ahead. He is literally climbing and pulling on me crying at this point. When we get ready to walk out the door...all of a sudden he stops crying.

We drive to the hospital (about 25 minutes away). We park the car and head into the office. I comfort and console/distract Ethan offering to let him push the button to the elevator as I describe things around to him. The elevator doors open and he starts to turn away from them saying, "NO NO NO NO," in a panic/anxious voice. (He doesn't like elevators.) So I pick him up and take him in. He whimpers a little bit but he is fine for the 1 floor up that we need to go. We get to the waiting room at the hospital after hours, and I check him in. We are the only people there. Ethan is surprisingly calm. He walks around the waiting room exploring his environment. He finds a fish tank...which he immediately runs to. This is great because the calming sounds will help ease his senses....or so I thought. They call Ethan's name, and we proceed to go back to the exam rooms. We have to get his weight so they take us to this little cubby-hole of a room. Ethan immediately starts crying. I try to calmly comfort him as we try to get his weight. Finally after 5 attempts to keep him on the scale the nurse decides it is close enough. Then we leave this room to go to the examination room. He kind of walks down the hallways holding my hand. I can tell he is very timid so I continue to speak to him trying to comfort him. We get into the exam room and the nurse asks if a student can observe. I say yes that is fine. I decide to try to give Ethan some deep pressure to help calm him from the cubby-hole room. So I pick him up, give him a snug hug and start to sway back and forth with him as I answer the nurses questions. Ethan laid his head on my shoulder and is actually squeezing me back the entire time (not typical). I tell the nurses that Ethan has autism and sensory issues. I let them know that odds are this will not be a pleasant experience but let's just do what needs to be done. After answering 9 billion questions, they say they need to take Ethan's temperature and would like to do it under his arm. The second the nurse lifts Ethan's shirt he panics and starts really crying hard. I hold on to him tightly and make sure the thermometer doesn't fall out. Finally it beeps. The nurse tells me that he is not running a fever, and that the doctor will be in to see Ethan in a few minutes. So I continue to comfort Ethan as we wait for the doctor. He noticed his chew brush in his bag and asks for it. So I hand it to him and think to myself this is great...he knows this will calm his senses. (What a smart boy!)

The doctor comes in shortly after and I explain the entire symptoms/time line to her. I then warn her, "He has autism with sensory issues. He is sick and not in the best mood. This isn't a patient you need to have a good bed side manner with. This is a let's get this done and power through it." She smiles and says, "OK let's do this." She puts her stethoscope to Ethan's back and he immediately starts crying and screaming. I continue to talk to him as I hold him snugly to try to soothe him. The doctor tells me, "I need to examine his ears could you sit down with him so he is at my height?" So I sit down, and she looks in his ear. By this time Ethan is screaming as I hold his head and body still so the doctor can do her job. She asks to see the other side. So I turn Ethan around and continue to hold his head & body still. Then the doctor says "Can I see in your mouth buddy?" I look down and tell Ethan "Say AH!" He SCREAMS "AAAHHHHHH!!!!!" The doctor and I kind of laugh as she says "That'll work." So the doctor and I try to talk as Ethan is still crying pretty loud. She tells me that Ethan has pink eye in both eyes, an ear infection and strep throat. We continue to discuss treatment options for what would work best for Ethan as I still continue to console and comfort him....meanwhile he is still crying pretty loud. The doctor leaves the room to call in the prescriptions. I try all of my tricks: books, toys, food, drink, etc. Nothing is working. So I just continue to hold and rock and speak softly to him. Finally after about 5 minutes of waiting for the doctor he calms down. Ethan says "We go home?...Yes!" (That's how he phrases his needs/wants unless prompted otherwise.) I tell him in a minute we have to wait for the doctor. A few more minutes go by and the doctor knocks on the door & comes in. Ethan immediately starts to cry and scream again. The doctor being a good sport just smiles at me and talks in a loud voice telling me about the medications and treatment etc. I thank her for her time and powering through. She smiles and says "It's no problem, I hope your night gets better. Bye Ethan." Ethan while still crying says "BBBYYYYYEEE!"

I tell Ethan we need to pack our bag and then we will go home. So he starts to calm down. I take him by the hand and walk out of the exam room and down the hall and back through the waiting room. Ethan is no longer crying and is waving bye to all of the nurses that are saying bye and waving at him. I kind of feel myself relax...the worst is over. Let's get him his medicine so he can feel better...not thinking about the elevator we are walking towards. Sure enough Ethan hears the elevator ding and immediately starts crying and screaming again. So I pick him up and walk into the elevator. The door opens 1 floor down and there is a nurse standing down the hallway just outside the elevator. She says, "Boy, someone sure doesn't like elevators huh? I could hear him coming the entire way down!" I smile and tell her, "No, he doesn't care much for elevators...or doctors." I step out of the elevator and put Ethan down. I hold his hand as we walk down the hallway to the exit. I point out & say to Ethan "There is Daddy's blue car. We are going to get in and go home." We walk out the doors and walk across the parking lot. Ethan is calm by now as I can tell he is anxious to get back home.

All of a sudden these sirens start going off all around us. Ambulances are going by several police cars and a life flight helicopter takes off. Are you kidding me?? Ethan starts crying and screaming while holding his ears. I quickly pick him up and open his door. I put him in his seat and buckle him in. I hand him his new TAG reader Cars 2 book and his drink and quickly close the car door. I get in and start the car. By now the sirens are at a distance and Ethan is starting to calm down again. I speak softly to him telling him "You did a great job at the doctor buddy. Very good job Ethan!" I back out of my parking spot and start to follow the exit signs. The exit signs lead me down through a parking garage. By the second loop around Ethan again starts to cry saying "We go home?...Yes!" I tell him "It's OK buddy we are almost out and we are going home." We finally hit the exit to the street and start heading home. Ethan is now calm playing with his TAG reader book. We were both quiet the entire ride home. I decided to go through the drive thru to pickup his medicines on the way home. We stop at Walgreens and his prescriptions aren't ready just yet. So we head home and unload from our adventure for the evening. Jessica ended up coming home from VBS at our church a few minutes after we got home. I tell her of our adventure and all the great times we had...*hint of sarcasm* . Then I head back over to pick up his prescription at Walgreens. When I get back, Jessica changed Ethan into his pajamas and we give him all his medicines. By now it is about 1 hour past his bed time. He takes his antibiotics, eye drops, Tylenol, and allows Jessica to clean out his nose. He was crying while she was doing it but after the evening he had...I would be too :)

Finally it is time for bed. Jessica reads him several books. His eyes look so tired as he starts to kind of fall asleep fighting it the entire time. Normally when Jessica and Ethan are done reading books Ethan will yell "DAD!!" and I will come running down the hall to pray with him. Usually, he laughs as I run and jump on his bed....Not tonight though. I hear this little soft voice "dad." I come walking in. Jessica leaves the room and turns out the light. I say our prayers with him while holding his hands. I give him a kiss on the cheek and start to leave his room saying, "Good night buddy, I love you." I hear Ethan say, "And one on the head?"....his way of asking for one more kiss on the head before I leave. So I kiss him on his forehead & his head and tell him, "Good night Ethan. I love you." He says, "I love you too Dad." Rough night but knowing he is on his way to feeling better is totally worth it.

GREAT JOB DAD!!!!!!!!!!!!!!!!! (Jessica)

Tuesday, August 2, 2011

Ethan's Sensory Diet - Brushing & Tactile

During our first couple of months of occupational therapy, the therapist had us participate in a variety of "experiments" in order to create a specific sensory diet for Ethan. Tapping into Ethan's 6 different senses can either help calm him or help stimulate him.....and we were on a mission to discover his tailored program.Why is this so important? Well....after trying over 100 OT activities in the first 2 weeks, I was asking myself that same thing. Our occupational therapist showed me a graph.

What happens to Ethan is that he tends to sit at the top of the graph.....his senses put him in a state of hyperarousal. This doesn't mean that he is running all over the place with energy. It means that his senses are very heightened, so something (like a hair dryer) that seems like no big deal to me, is a VERY big deal to Ethan....because his senses are heightened. So, let's look at this through Ethan's body.....

He wakes up to the sound of my hair dryer....not all that bad since I am a room away, but it is enough to wake him. He wakes easily to sound. So, right away, he is moving up the graph....he is still in the Optimum Zone, but he is moving up towards the top black line. Then, we go to the bathroom. The light is turned on, the temperature changes because he takes he bottoms off to go to the bathroom on a cold toilet, and we flush the loud toilet in the small echo-ish room....sensory overload. So, now, he is either at the top of the Optimum Zone or he has crossed over into the Hyperarousal state or Sensory Overload. When this happens, Ethan has a very difficult time doing anything. It is like he is paralyzed with fear/anxiety. So, in order to calm him, we must do something from his sensory diet. This is why we are doing the see what makes him climb to the top of this graph (triggers) or what helps him fall down the graph (calms). An interesting note....if Ethan is above the optimum range, and he doesn't calm far enough down the graph....he will continue to be paralyzed over & over again. This is why events, such as Vacation Bible School or birthday parties or family functions, are difficult for Ethan. There usually aren't very many opportunities to calm down completely. So, Ethan tends to exclude himself from the main events or from the large helps him stay in the optimum range. (He's so smart!)

Back to our morning routine, we now know that the sound & feel of running water is calming to Ethan. So, washing his hands after going potty isn't only important for's important to his sensory systems. And he usually spends a lot of time playing in the water.....which is fine with me! And, as I'm writing, Ethan brought me his yoga ball & laid down on the floor. He is watching morning cartoons....which tends to make him climb the chart. We know that pressure is calming to Ethan. So we use a yoga ball a lot! He can roll around on it....allowing him to crash, hang upside down, kick/throw, or just lay on it.....all things that involve his muscles & calm his senses. He also likes to lay down while we roll the ball up & down his body with VERY slight pressure. I believe that, even at his young age, Ethan is aware of his needs even though he can't communicate it to us with his words. Just like bringing me the yoga ball & laying down. He knows he needs it, but he can't tell people....but we are working on that too.

So, after working with Ethan's Proprioceptive & Vestibular Systems (cardio & weight...see previous post), our therapist introduced us to a Brushing/Compressions Technique. For the first 2 weeks every 4 hours, we would complete this routine.You literally brush Ethan's skin (using a special brush) in order to wake up his senses. Then you give quick compressions to his joints in order to "reset" his system. It was the weirdest thing I had ever witnessed in my life! Here is a YouTube video of a mom doing this with her child.....and this is what we did with Ethan every 4 hours. It was so strange, but the results were amazing! Ethan was a different kid! He was sitting for longer periods of time, he was making more eye contact, he was following directions better....his senses just seemed more calm overall! It was totally worth doing this weird thing!

We did that for about 6 weeks. Our therapist told us that once Ethan was aware of what calm "felt" like, he wouldn't need to be brushed as much or at all. And she was right. Towards the end of the 6 weeks, we actually saw this technique hype him up! So, we knew that he was done with the brushing. But I'm so glad we did it! Now, we only do the joint compression, and it's only as needed....another tool in our toolbox.

During this time we also explored Ethan's tactile system. This is our sense of touch. After participating in 43 tactile activities (yes...I did them all), here is what we found most helpful to help calm & reset Ethan's system. This pushed the reset button on his senses so he can start anew on the graph.

1. Rice Play - Similar to a sand box, but using rice or beans & can be used inside the house
2. Kid Sandwich - Picture an Oreo cookie. Ethan is the filling & pillows/cushions/Mom&Dad are the cookies
3. Heavy blanket
4. Massage/Bear Hugs
5. Matching & Finding games
6. Deep pressure - Firm tickling, firm hand-holding, firm shoulder touch for guiding, etc. Firm - NOT HARD

Monday, August 1, 2011

Vacation Bible School

So, this week is our church's VBS. I had signed up to help with crafts, and I realized that they were going to have an Early Childhood VBS....ages 3-5. Initially, I was excited! I can take Ethan with me!!!! YEAH!!!!

And then I thought about VBS.....loud music, cheering kids, lots of transitions...all things that Ethan struggles with, and my joy was instantly deflated. One more thing he can't do. Or could he??? This debate, could or couldn't he, went back & forth in my mind for more than a week. Finally, I decided against it. He will be starting preschool soon, and that will be enough of a challenge for him....let's pass on the VBS for this year. And we made the right decision.

But tonight, since I was kid-free, I was able to look around & observe the other 3-5 year olds. Several of them had their hands over their ears while the music was playing. Many of them were crying for their Mom or Dad.  LOTS of them had difficulty sitting in their pew & listening to the presentation. In my mind, my child sticks out like a sore thumb among his peers. But tonight as I watched those kids, I'm not sure Ethan would act all that different from the other children his age.

I think a lot of times, I am super paranoid that Ethan is going to be the ONLY child who needs extra time, extra care, extra help.....but tonight I realized that he's not the only one. They are so little. They all need someone to help them. And this evening, I was able to step out of my "autism bubble", and look around at the others....the others who are crying, screaming, & covering their ears. "Typical" kids. Then I had an "Ah-ha" moment.

My job is to help Ethan be as comfortable as he can be in new environments through social stories, studying pictures of places before we go, providing him with calming aids...........but I can't STOP him from being upset or afraid or nervous. He's a kid.....he's a human-being....and we all have these emotions. I can't stop it from happening, but I can help him. And I am realizing that when Ethan becomes upset or agitated with a "trigger", I see it as MY failure. I have failed to help him because he is having a meltdown. But, Jessica, meltdowns happen....with every kid. Imagine how much harder it would be for Ethan if I hadn't done all I had done for whatever situation that might be. I can't PREVENT the emotion....I can only help him DEAL with it. And when he has meltdowns, it's not that I have failed him as his's because he is a 3 year old. He's a 3 year old, Jessica!

Who knew VBS would be so insightful & healing?! HA!