Today, Ethan & I went to Walmart after school in order to pick up a few items for my grandpa who has recently moved to a nursing home in our town. Ethan had a weepy day at school today, so I thought I was in for a tough errand. So, I used bribery! I told him if he was good & didn't whine/cry, he could get a new toy. That kid was a good as gold! So, he picked out a new toy.
Why am I blogging about a new toy? The toy he picked is a car launcher, so in order for the toy to work, Ethan has to use TWO HANDS. He has been playing it without any trouble for about 1/2 an hour now. I took some video of him. He concentrates so much while lining up the cars to the launcher & uses his muscles to push the car onto the track. These are things that Ethan needs to work on, and he is doing it with this toy! AND LOVING IT!!! Check it out!
Tuesday, May 29, 2012
Thursday, May 24, 2012
Inspired for DIY Summer OT!!!!
It has been CRAZY around here for the last 2 weeks. Ethan & I came down with strep throat last week, we had a death in the family, I have been helping my mom prepare to move my only living grandparent to a nursing home in our town, as well as doing our version of "Clean House" at her own house, and the end of school is nearing......we we are so close I can taste it!!!! It has been BUSY, BUSY, BUSY around here!
When I become overwhelmed with my to-do list, I often zone out to my favorite websites, and occasionally I will find a new favorite....AND I HAVE A NEW FAVORITE TODAY!!!!!
After a brief conversation with Ethan's current Occupational Therapist today (see suggested activities for Ethan below), I became re-inspired to search for new OT activities to do this summer. Ethan & I have become a bit bored with our current games, so I began searching PINTEREST.com (one of my favorite websites for zoning out). I came across this article 40 WAYS TO DO SENSORY PLAY. It is a short & concise list, and ALL kiddos will love it! It would be great to do these things when the long summer days begin to lead to bored children!
They have so many other articles and ideas that would AWESOME for summer play! So...check out my new favorite website, Make, Do & Friend.com!
Suggested OT Activities to do At Home With Ethan This Summer! (Just so I don't forget!!!)
1. Weighted pencil (do it yourself...click here for example.)
2. Thicker writing utensils
3. Continue to encourage coloring. Use Wikki Stix & have him fill in the created shape.
4. Continue to correct his pencil grasp. Correct his fingers to use pointer & middle finger with his thumb. Here is a great article & visual aid for what we are working towards.
5. The other fingers need to fold under. Have him hold a penny or small object in these fingers to help.
6. When working on cutting, place Ethan on his tummy. It stabilizes the muscles needed for this task.
7. Place sandpaper under coloring pages in order to give Ethan the sensory feedback he needs.
8. He is starting to be able to button large buttons on his own! WOO-HOO!!!!!
Thank you, Mrs. T! We are so grateful to have had you as our OT this year! We will miss you!!!!!
When I become overwhelmed with my to-do list, I often zone out to my favorite websites, and occasionally I will find a new favorite....AND I HAVE A NEW FAVORITE TODAY!!!!!
After a brief conversation with Ethan's current Occupational Therapist today (see suggested activities for Ethan below), I became re-inspired to search for new OT activities to do this summer. Ethan & I have become a bit bored with our current games, so I began searching PINTEREST.com (one of my favorite websites for zoning out). I came across this article 40 WAYS TO DO SENSORY PLAY. It is a short & concise list, and ALL kiddos will love it! It would be great to do these things when the long summer days begin to lead to bored children!
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| 40 Ways to Do Sensory Play |
They have so many other articles and ideas that would AWESOME for summer play! So...check out my new favorite website, Make, Do & Friend.com!
Suggested OT Activities to do At Home With Ethan This Summer! (Just so I don't forget!!!)
1. Weighted pencil (do it yourself...click here for example.)
2. Thicker writing utensils
3. Continue to encourage coloring. Use Wikki Stix & have him fill in the created shape.
4. Continue to correct his pencil grasp. Correct his fingers to use pointer & middle finger with his thumb. Here is a great article & visual aid for what we are working towards.
5. The other fingers need to fold under. Have him hold a penny or small object in these fingers to help.
6. When working on cutting, place Ethan on his tummy. It stabilizes the muscles needed for this task.
7. Place sandpaper under coloring pages in order to give Ethan the sensory feedback he needs.
8. He is starting to be able to button large buttons on his own! WOO-HOO!!!!!
Thank you, Mrs. T! We are so grateful to have had you as our OT this year! We will miss you!!!!!
Tuesday, May 22, 2012
Did You Light It Up Blue?
Maybe it didn't seem like much. A simple blue bulb lighting your porch. Why go to the trouble of changing out your bulbs for blue ones? What difference did it make? Well.......I can tell you friends.....that is not only means the world to my family......but to so many others as well. And guess what......you were not alone in participating! To see what the world did this past April 2nd, 2012, watch this video. It is so awesome to see the world coming together to shine a light on autism. And next year, we are going bigger! We are going to be buying out the blue Christmas lights this December!!!!!
Monday, May 21, 2012
What Exactly Is Autism?
I get asked this question a lot....and I'm so happy when people ask me. It is an opportunity to share with others our experience as well as help spread awareness & understanding. Recently, I was asked this question by a friend from high school via Facebook. He said he was looking on the Internet & finding a lot of information with technical terms....not to mention a vast variety of information.
Well, here is what I have been taught.....in a nutshell. Every person with autism is different. It shows up differently in each person. This is because it is a brain disorder. The brain of an autistic person is LITERALLY wired differently than the "typical" brain. So they receive & process information in a different way. What causes it? They still don't know, but they now think that it happens during development in the womb & is related to genetics.
So, how do you know? Basically, autism shows up in THREE areas. If your child is exhibiting traits in only one or two areas, they DO NOT have autism....it MUST be ALL THREE AREAS. AND IT MUST BE A CERTAIN PERCENTAGE IN EACH AREA. Basically, it must happen/occur a lot of the time. Here is a list of the 3 areas & how they show up in our Ethan.
1. Speech - A person with autism will have snags in their speech development. Some may never speak, some may say only a few words, and some may have non-functional speech. Ethan falls into the last of these. Non-functional speech means that he is ABLE to speak & talk, but has difficulty communicating with his words. This is why speech therapy is SOOOOO important! Our Ethan doesn't understand the back & forth of a conversation. Over the last year, he has progressed a TON! Because of his hard work in speech therapy, he is now able to express his wants/needs with his words, able to answer questions with a definite answer (what color is the grass? Are you hungry?), and in the last few weeks.....actual non-scripted/spontaneous conversations have been emerging!!! Non-scripted means we haven't given him his words to say....he is coming up with the words on his own. (Examples of scripted would be like, "Thank you. You're welcome.") YEAH! More about that later this week....
2. Social Behavior - The second trait of autism is delays in social behavior. Lack of eye contact, wanting to play on their own, and being unable to function typically in social settings are examples of delayed social interaction. Ethan struggles very much in this area. Again, because of hard work, Ethan is okay with other kids playing NEXT to him.....although he would still prefer to play alone. For so long, he would wig out if any other child came NEAR him. But NOW he is able to sit next to kids during eating times & play next to kids during playtime. We are still working on sharing our toys & playing WITH kids...but progress is being made & we are so excited!
3. "Odd" behaviors - The last area is to look for strange behaviors. Rocking, spinning, flapping, not sleeping, picky eater, repetitive behaviors and lining up toys seem to be the most common behaviors in this field. Ethan exhibits constant chewing, not sleeping, picky eater, repetitive behaviors, lining up toys. However, there are some more subtle ones as well. For Ethan, we learned of 2 subtle behaviors during his diagnosis clinic. They showed up that Ethan only uses one hand when completing tasks. I had never noticed that before, but he did! For example, eating a bowl of cereal......he will use his spoon with one hand & the bowl moves all over the table....because he doesn't use his other hand to stabilize the bowl. Same thing for pulling up & down his pants.....he only uses one hand. Occupational therapy has been helping in this area as well! But think of the basic skills that you use two hands for....putting on socks & shoes, going to the bathroom, opening things, zipping, buttoning, snapping, etc. These are all difficult for Ethan because he only uses one hand. But it is getting better with practice. Another behavior that we never noticed was that Ethan plays with his toys at eye level. If his cars are on the floor, he is laying on the floor so his cars are at his eye level. If something isn't at his eye level, he will pull it to his eye....TV, computer, flash cards, toys, etc. His vision is fine, it's just something he does, but we never noticed it before. But apparently these traits are common as well.
So, that is autism in a nutshell. Usually anxiety is the underlying cause/reason for these behaviors. The world is very scary to Ethan.....people, animals, sounds, automobiles, stores, the environment....it's all changing & non-constant. Not knowing what to expect is almost paralyzing. So, we help him to take in the world a little at a time and teach him skills that will help him navigate through the scary/overwhelming environments. Our Ethan also has Sensory Processing Disorder which makes things that much more complicated. But we are soooo blessed to have a variety of talented & knowledgeable people helping us & Ethan learn & understand how to work through these challenges. He is doing so well, and I truly believe that his future is going to be so much better because of the work he is doing now! GO ETHAN!
If you still have questions about Autism Spectrum Disorder, please check out the links on this blog. They are very helpful!
Well, here is what I have been taught.....in a nutshell. Every person with autism is different. It shows up differently in each person. This is because it is a brain disorder. The brain of an autistic person is LITERALLY wired differently than the "typical" brain. So they receive & process information in a different way. What causes it? They still don't know, but they now think that it happens during development in the womb & is related to genetics.
So, how do you know? Basically, autism shows up in THREE areas. If your child is exhibiting traits in only one or two areas, they DO NOT have autism....it MUST be ALL THREE AREAS. AND IT MUST BE A CERTAIN PERCENTAGE IN EACH AREA. Basically, it must happen/occur a lot of the time. Here is a list of the 3 areas & how they show up in our Ethan.
1. Speech - A person with autism will have snags in their speech development. Some may never speak, some may say only a few words, and some may have non-functional speech. Ethan falls into the last of these. Non-functional speech means that he is ABLE to speak & talk, but has difficulty communicating with his words. This is why speech therapy is SOOOOO important! Our Ethan doesn't understand the back & forth of a conversation. Over the last year, he has progressed a TON! Because of his hard work in speech therapy, he is now able to express his wants/needs with his words, able to answer questions with a definite answer (what color is the grass? Are you hungry?), and in the last few weeks.....actual non-scripted/spontaneous conversations have been emerging!!! Non-scripted means we haven't given him his words to say....he is coming up with the words on his own. (Examples of scripted would be like, "Thank you. You're welcome.") YEAH! More about that later this week....
2. Social Behavior - The second trait of autism is delays in social behavior. Lack of eye contact, wanting to play on their own, and being unable to function typically in social settings are examples of delayed social interaction. Ethan struggles very much in this area. Again, because of hard work, Ethan is okay with other kids playing NEXT to him.....although he would still prefer to play alone. For so long, he would wig out if any other child came NEAR him. But NOW he is able to sit next to kids during eating times & play next to kids during playtime. We are still working on sharing our toys & playing WITH kids...but progress is being made & we are so excited!
3. "Odd" behaviors - The last area is to look for strange behaviors. Rocking, spinning, flapping, not sleeping, picky eater, repetitive behaviors and lining up toys seem to be the most common behaviors in this field. Ethan exhibits constant chewing, not sleeping, picky eater, repetitive behaviors, lining up toys. However, there are some more subtle ones as well. For Ethan, we learned of 2 subtle behaviors during his diagnosis clinic. They showed up that Ethan only uses one hand when completing tasks. I had never noticed that before, but he did! For example, eating a bowl of cereal......he will use his spoon with one hand & the bowl moves all over the table....because he doesn't use his other hand to stabilize the bowl. Same thing for pulling up & down his pants.....he only uses one hand. Occupational therapy has been helping in this area as well! But think of the basic skills that you use two hands for....putting on socks & shoes, going to the bathroom, opening things, zipping, buttoning, snapping, etc. These are all difficult for Ethan because he only uses one hand. But it is getting better with practice. Another behavior that we never noticed was that Ethan plays with his toys at eye level. If his cars are on the floor, he is laying on the floor so his cars are at his eye level. If something isn't at his eye level, he will pull it to his eye....TV, computer, flash cards, toys, etc. His vision is fine, it's just something he does, but we never noticed it before. But apparently these traits are common as well.
 |
| This is a great visual aid for autism behaviors! |
So, that is autism in a nutshell. Usually anxiety is the underlying cause/reason for these behaviors. The world is very scary to Ethan.....people, animals, sounds, automobiles, stores, the environment....it's all changing & non-constant. Not knowing what to expect is almost paralyzing. So, we help him to take in the world a little at a time and teach him skills that will help him navigate through the scary/overwhelming environments. Our Ethan also has Sensory Processing Disorder which makes things that much more complicated. But we are soooo blessed to have a variety of talented & knowledgeable people helping us & Ethan learn & understand how to work through these challenges. He is doing so well, and I truly believe that his future is going to be so much better because of the work he is doing now! GO ETHAN!
If you still have questions about Autism Spectrum Disorder, please check out the links on this blog. They are very helpful!
Thursday, May 17, 2012
Walk With Me Ambassador!
Guess what!? Ethan was asked to be an Easter Seals Ambassador for their Walk With Me event! These events happen all over, but the closest to us is happening on July 21st. We are putting together a team of people to walk together in support of Easter Seals & the amazing work they do for those with special needs. (If you would like to join our team, register with our Courage & Coffee group here....we would LOVE to have you!!!) We are sooooo honored that Ethan has been asked to be an ambassador! I still have some paper work to fill out & a short photography session with my amazingly talented sister-in-law (thanks Aunt Rachael!), but Ethan's picture & story will soon be featured on the Easter Seal's website with some other pretty amazing kids.
As I was reading through the bios of these kids, one story truly touched my heart.....and I just have to share it.
As I was reading through the bios of these kids, one story truly touched my heart.....and I just have to share it.
MEET DAVEY
"Davey’s family shared the following story about him. Davey has always been a “hugger” and loves people, to the point where we have had to have several talks about stranger danger. One day we were having breakfast in a café and a big burly man with a long beard and biker clothes came in and happened to smile at Davey. That’s all it took...for the next half hour Davey would smile and the guy would wave. As the man got up to leave he patted Davey on the head and said “Bye little Buddy.” Davey replied, “I wanna give you a hug!” The man squatted down in front of my little boy and embraced him. Davey said, “I love you.” Tears rolled down the face of this man as he simply relied, “Thank you Jesus for your love today.”
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| To Find A Walk Near You, Click HERE! |
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Thank you Moms for ALL you do!
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Wednesday, May 16, 2012
Ethan's First Field Trip!
Last Friday, Ethan's entire morning preschool went on a field trip! I was so excited because parents were able to go too! So, I took they "day off" from watching my sister's kiddos, and headed to the park where the school buses filled with excited 3 year olds were going to meet us.
After I paid my entrance fee, I found Ethan & his class, signed him "out" to my care, got our animal feed (inside an ice cream cone that the animals could eat as well), and we were off! This particular park is a place full of barn yard type animals. We saw ducks, rabbits, chickens, horses, cows, goats, pigs, sheep, and a turtle.....which upon closer inspection was actually a floating clump of dirt in the water, but we will say it was a turtle.
To say that Ethan loved it would be an understatement.....he was ECSTATIC! He kept saying, "Let's go see ANOTHER animal!" It was so cute! Here's a short video.....
I was so impressed with my child during this field trip. He was getting right in there....in the midst of all of the kids.....and looking at the animals, playing on the playground, going down an ENCLOSED slide, and just being a kid! All of these things.....ALL OF THESE THINGS.....he wouldn't do at the beginning of the year. He was too terrified. He would be so overcome with anxiety to do any of these things that he would either cling to me or have a meltdown. So, I would have to do these things with him. BUT NOT TODAY!!!! YEAH!!!! I just watched in amazement as he did every single thing on the playground all by himself!....and was having FUN!!!! We did every single thing there and NO MELTDOWNS!!!! IT WAS AWESOME!
Before we left, Ethan wanted to feed the rest of his animal feed & ice cream cone to the "Big Horse." When we made our way over to the horse pen, someone was already feeding the big horse. So Ethan just threw his cone inside the pen, and was ready to go. It happened so fast that I didn't even realize what he had done until one of the park's volunteers retrieved the cone & handed it back to him. She took Ethan's hand & helped him feed the small horse the entire cone. She was telling him how to hold it while keeping her hand over his on the cone. She was very encouraging & calmed Ethan's nerves of feeding the horse as well as being so close to someone he didn't know. Ethan was laughing & smiling by the time the small horse ate every morsel of that cone. I am so glad that I had my sunglasses on because my eyes were red with tears. The kindness of this stranger is rare for us. Usually we encounter looks of confusion or stares of annoyance or smiles of pity....but not from this sweet young lady. She kindly took Ethan up to the horse without asking him & happily held his hand in place while they feed this horse.....and Ethan loved it. Here are some pictures of this wonderful moment.....
It was a great field trip, and I'm so glad I was able to go with Ethan's school. Ethan has asked us every day since last Friday if we could go to the Farm Park. He even had an entire spontaneous conversation with my mom about it! (Spontaneous means Ethan came up with his own words.) I am thinking we may be making many trips to this park & probably the local zoo as well. I love to see Ethan so happy & so independent. I never thought I would see him do the things he is doing.....and that calls for some celebration! Let's get another cup of coffee while we look at some more pictures!!!!
After I paid my entrance fee, I found Ethan & his class, signed him "out" to my care, got our animal feed (inside an ice cream cone that the animals could eat as well), and we were off! This particular park is a place full of barn yard type animals. We saw ducks, rabbits, chickens, horses, cows, goats, pigs, sheep, and a turtle.....which upon closer inspection was actually a floating clump of dirt in the water, but we will say it was a turtle.
To say that Ethan loved it would be an understatement.....he was ECSTATIC! He kept saying, "Let's go see ANOTHER animal!" It was so cute! Here's a short video.....
I was so impressed with my child during this field trip. He was getting right in there....in the midst of all of the kids.....and looking at the animals, playing on the playground, going down an ENCLOSED slide, and just being a kid! All of these things.....ALL OF THESE THINGS.....he wouldn't do at the beginning of the year. He was too terrified. He would be so overcome with anxiety to do any of these things that he would either cling to me or have a meltdown. So, I would have to do these things with him. BUT NOT TODAY!!!! YEAH!!!! I just watched in amazement as he did every single thing on the playground all by himself!....and was having FUN!!!! We did every single thing there and NO MELTDOWNS!!!! IT WAS AWESOME!
Before we left, Ethan wanted to feed the rest of his animal feed & ice cream cone to the "Big Horse." When we made our way over to the horse pen, someone was already feeding the big horse. So Ethan just threw his cone inside the pen, and was ready to go. It happened so fast that I didn't even realize what he had done until one of the park's volunteers retrieved the cone & handed it back to him. She took Ethan's hand & helped him feed the small horse the entire cone. She was telling him how to hold it while keeping her hand over his on the cone. She was very encouraging & calmed Ethan's nerves of feeding the horse as well as being so close to someone he didn't know. Ethan was laughing & smiling by the time the small horse ate every morsel of that cone. I am so glad that I had my sunglasses on because my eyes were red with tears. The kindness of this stranger is rare for us. Usually we encounter looks of confusion or stares of annoyance or smiles of pity....but not from this sweet young lady. She kindly took Ethan up to the horse without asking him & happily held his hand in place while they feed this horse.....and Ethan loved it. Here are some pictures of this wonderful moment.....
It was a great field trip, and I'm so glad I was able to go with Ethan's school. Ethan has asked us every day since last Friday if we could go to the Farm Park. He even had an entire spontaneous conversation with my mom about it! (Spontaneous means Ethan came up with his own words.) I am thinking we may be making many trips to this park & probably the local zoo as well. I love to see Ethan so happy & so independent. I never thought I would see him do the things he is doing.....and that calls for some celebration! Let's get another cup of coffee while we look at some more pictures!!!!
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| Holding his animal feed & excited to see the animals! |
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| He's not chasing the ducks...he is waving & saying hi. |
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| Watching the rabbits |
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| Checking out the chicken coop! |
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| He wanted to climb in with the baby cows.....future Dr. Temple Grandin??? |
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| This calf wouldn't go near the group of kids but came straight over to Ethan. He was so excited to pet her! |
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| His favorite of the day! Baby pig! |
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| Playing in the barn with the stuffed animals |
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| He WANTED to wait in line AND go down the curly slide INSIDE a silo! AWESOME! |
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| Playing in the old school house |
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| Resting for a bit... |
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| "Say Hamburger!" |
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| I was so excited to see him get right in there with the other kids & PLAY! |
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| Having a great time! |
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| YES folks! He is playing WITH other kids! YEAH!!! |
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| I just KNEW that he would want to play with this! |
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| The cutest little cow I've ever seen! |
Saturday, May 12, 2012
One Year Later
This is not going to be an easy post for me. Honesty.....it's not always the easiest thing.
It has been one year since Ethan was tested & officially diagnosed by the Easter Seal's team with "classic autism." What I want to say is that it's been a hard year, but we are fine now. Well....sorry folks.....I'm not fine. The fact that my one & only child has this developmental disorder is just as hard on me as it was a year ago. He has & is making HUGE progress, but I HATE that my child has this disorder. I wanted so much for him, and this was NOT on my list or in my plans.
I just came home from our church's annual Women's Banquet. I actually had to come home early. I was about to lose it. I made it to my van before it all came spilling out....thank goodness.
I LOVE our Mother's Day weekend banquet. In fact, last year, I was the point person to plan it, and this year one of my best friend's did it. It was beautiful. We had our amazing 4 course meal provided by the men of the church and then Rachel West Kraemer, our special speaker/singer for the evening, began her performance. It was wonderful. But by the 3rd song in, I was already crying & trying to keep it together. Her songs were all about God's faithfulness & provision....and one was specifically about going through trials. I think on any other week, I could have handled this with my normal tears. But because of the significance of this week, I was barely keeping it together. My friends were giving me looks & pats of love, but I just was trying to limit myself to "church tears" while I kept dabbing my eyes.
After she sang a bit, she paused & asked for others to speak about God's faithfulness in their lives. I wanted to say something....about how God has been my sole source of strength & comfort on most days of this past year....but I didn't think I could make it through without going into the "ugly cry." After a few testimonies, Rachel shared about how her own son was diagnosed with autism years ago. She began to share their story of love & heartache, and I could keep it together no longer. I quickly covered my face & allowed the tears to rapidly stream down my face. I knew exactly what she was talking about....I know it all too well.
After her story, she began to close with the song, It Is Well With My Soul. After checking with my mom across my table for permission, I left the church. (I love it that my mama already knew...) I couldn't keep it together anymore, & I knew that this song would put me over the edge. I made it to my van & let it happen. Sobbing. Loud, ugly moaning crying. Cries of pain for my baby. Cries of sadness for his non-typical future path. Cries of brokenness. Of a life lost. Of a dream gone.
After about 10 minutes, I made my way home through still crying eyes, walked through the door & into my husband's open arms. This is a familiar scene in our home. The two of us not saying anything, but clinging to one another as we mourn. We don't need words....we both feel it. We share it. We understand it.
Tomorrow is Mother's Day, and I'm positive tonight's tears will not be my last of the weekend. I am so proud of Ethan, and I love every minute of being his mother. I am so blessed to have him as my child, and he has caused my heart to swell 10 times it's size. I love everything about him. But the pain of seeing him locked in his world is heartbreaking....even a year later. The challenges he faces on a daily basis are still overwhelming for this mama. And that's the hard & honest truth.
It's moments like this when it is hard to get out of bed in the morning. It's times like this that I just want to hole up in my home & stay in my protective bubble. It's days like this that even courage & coffee aren't enough to sustain me. So what does? Hearing Ethan babble from his bed in the morning. Seeing his messed up hair & smelling his super awful morning breath. Looking into those eyes & knowing that God gave ME this child. God entrusted ME with this path. And God provides ME with strength & endurance & wisdom. And I am so happy that God chose ME to be Ethan's mama....even on the hard days.
Thank you God for giving me Ethan. I love that kid more than life! Thank you for not only entrusting him to us, but for being there to help us as we navigate this path. I am one lucky mama! Happy Mother's Day!
It has been one year since Ethan was tested & officially diagnosed by the Easter Seal's team with "classic autism." What I want to say is that it's been a hard year, but we are fine now. Well....sorry folks.....I'm not fine. The fact that my one & only child has this developmental disorder is just as hard on me as it was a year ago. He has & is making HUGE progress, but I HATE that my child has this disorder. I wanted so much for him, and this was NOT on my list or in my plans.
I just came home from our church's annual Women's Banquet. I actually had to come home early. I was about to lose it. I made it to my van before it all came spilling out....thank goodness.
I LOVE our Mother's Day weekend banquet. In fact, last year, I was the point person to plan it, and this year one of my best friend's did it. It was beautiful. We had our amazing 4 course meal provided by the men of the church and then Rachel West Kraemer, our special speaker/singer for the evening, began her performance. It was wonderful. But by the 3rd song in, I was already crying & trying to keep it together. Her songs were all about God's faithfulness & provision....and one was specifically about going through trials. I think on any other week, I could have handled this with my normal tears. But because of the significance of this week, I was barely keeping it together. My friends were giving me looks & pats of love, but I just was trying to limit myself to "church tears" while I kept dabbing my eyes.
After she sang a bit, she paused & asked for others to speak about God's faithfulness in their lives. I wanted to say something....about how God has been my sole source of strength & comfort on most days of this past year....but I didn't think I could make it through without going into the "ugly cry." After a few testimonies, Rachel shared about how her own son was diagnosed with autism years ago. She began to share their story of love & heartache, and I could keep it together no longer. I quickly covered my face & allowed the tears to rapidly stream down my face. I knew exactly what she was talking about....I know it all too well.
After her story, she began to close with the song, It Is Well With My Soul. After checking with my mom across my table for permission, I left the church. (I love it that my mama already knew...) I couldn't keep it together anymore, & I knew that this song would put me over the edge. I made it to my van & let it happen. Sobbing. Loud, ugly moaning crying. Cries of pain for my baby. Cries of sadness for his non-typical future path. Cries of brokenness. Of a life lost. Of a dream gone.
After about 10 minutes, I made my way home through still crying eyes, walked through the door & into my husband's open arms. This is a familiar scene in our home. The two of us not saying anything, but clinging to one another as we mourn. We don't need words....we both feel it. We share it. We understand it.
Tomorrow is Mother's Day, and I'm positive tonight's tears will not be my last of the weekend. I am so proud of Ethan, and I love every minute of being his mother. I am so blessed to have him as my child, and he has caused my heart to swell 10 times it's size. I love everything about him. But the pain of seeing him locked in his world is heartbreaking....even a year later. The challenges he faces on a daily basis are still overwhelming for this mama. And that's the hard & honest truth.
It's moments like this when it is hard to get out of bed in the morning. It's times like this that I just want to hole up in my home & stay in my protective bubble. It's days like this that even courage & coffee aren't enough to sustain me. So what does? Hearing Ethan babble from his bed in the morning. Seeing his messed up hair & smelling his super awful morning breath. Looking into those eyes & knowing that God gave ME this child. God entrusted ME with this path. And God provides ME with strength & endurance & wisdom. And I am so happy that God chose ME to be Ethan's mama....even on the hard days.
Thank you God for giving me Ethan. I love that kid more than life! Thank you for not only entrusting him to us, but for being there to help us as we navigate this path. I am one lucky mama! Happy Mother's Day!
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| 3 months old |
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| 1st Birthday |
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| 2 years old |
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| 3 years old |
Good Teachers Make All the Difference
This past week was Teacher Appreciation week, and I was very excited to be able to pamper Ethan's teachers a little bit. Each day Ethan would take his teachers a small gift, and Ethan LOVED doing this! Note cards, candy, drinking cups, etc.....very small things in comparison to what these amazing teachers have done for Ethan.
Last week, Ethan's classroom teacher told me that she caught him reading a book to another student.....sitting side by side together. That is amazing....both the actual sitting & the sitting NEXT to a child. She also told me that he sought her out & verbally asked for her help with something. She said that this was a first time. AWESOME! His speech therapist told me this week that she is working with Ethan on being quiet & LISTENING to others. This small statement almost had me in tears. It wasn't that long ago when I didn't think Ethan even HAD a voice....and now he is working on controlling it. AMAZING! His occupational therapist sent home several things from earlier in the school year, and the change from then to now regarding his penmanship is OUTSTANDING!
All of these things happening are because of Ethan's awesome teachers. They not only care for Ethan but they push him to do his best every day. I love that! They have told us that he is doing very well with transitions, he no longer fully relies on his support aids, his speech is better than ever before, his motor skills are becoming solid, and his social skills are growing a little each day. The word "thankful" just doesn't do justice to how I feel about Ethan's teachers. Grateful? Blessed? Who knows. But these 4 women are laying the ground work for Ethan's future success.....and they are doing a FANTASTIC job! We couldn't be happier!
I also am so thankful for Ethan's two Sunday school teachers. They, too, love & care for Ethan. They are teaching him about Jesus through crafts, singing, stories, play, and through their own lives. Awhile ago, I attended a Temple Grandin conference, and a woman asked this question: "How can we teach children with autism about Christianity? A very non-concrete concept?" Dr. Temple's answer? By living it out in your actions. Show them what it means to love your neighbor. Show them what it means to love like Christ. Show them how to follow the 10 commandments. Show them, show them, show them.....
Awesome.
And Ethan is blessed to have 2 teachers that show him & show him & show him. This week, after reading My Church Party, one of Ethan's teachers came to our house. Since we hadn't gone to church this Sunday due to our weekend road trip, we hadn't received any of our weekly Sunday school materials. So.....his teacher brought them to us. Are you crying? Because I am! Thank you, Ms. Randi!
Good teachers make all the difference in the lives of children. I knew that as a teacher, but now that I am a mom....I see it first hand. THANK YOU, THANK YOU, THANK YOU to all of Ethan's teachers! We are so blessed to be under your care & knowledge. You have all impacted this family's life for the better in so many ways. We love you!!!!!
Last week, Ethan's classroom teacher told me that she caught him reading a book to another student.....sitting side by side together. That is amazing....both the actual sitting & the sitting NEXT to a child. She also told me that he sought her out & verbally asked for her help with something. She said that this was a first time. AWESOME! His speech therapist told me this week that she is working with Ethan on being quiet & LISTENING to others. This small statement almost had me in tears. It wasn't that long ago when I didn't think Ethan even HAD a voice....and now he is working on controlling it. AMAZING! His occupational therapist sent home several things from earlier in the school year, and the change from then to now regarding his penmanship is OUTSTANDING!
All of these things happening are because of Ethan's awesome teachers. They not only care for Ethan but they push him to do his best every day. I love that! They have told us that he is doing very well with transitions, he no longer fully relies on his support aids, his speech is better than ever before, his motor skills are becoming solid, and his social skills are growing a little each day. The word "thankful" just doesn't do justice to how I feel about Ethan's teachers. Grateful? Blessed? Who knows. But these 4 women are laying the ground work for Ethan's future success.....and they are doing a FANTASTIC job! We couldn't be happier!
I also am so thankful for Ethan's two Sunday school teachers. They, too, love & care for Ethan. They are teaching him about Jesus through crafts, singing, stories, play, and through their own lives. Awhile ago, I attended a Temple Grandin conference, and a woman asked this question: "How can we teach children with autism about Christianity? A very non-concrete concept?" Dr. Temple's answer? By living it out in your actions. Show them what it means to love your neighbor. Show them what it means to love like Christ. Show them how to follow the 10 commandments. Show them, show them, show them.....
Awesome.
And Ethan is blessed to have 2 teachers that show him & show him & show him. This week, after reading My Church Party, one of Ethan's teachers came to our house. Since we hadn't gone to church this Sunday due to our weekend road trip, we hadn't received any of our weekly Sunday school materials. So.....his teacher brought them to us. Are you crying? Because I am! Thank you, Ms. Randi!
Good teachers make all the difference in the lives of children. I knew that as a teacher, but now that I am a mom....I see it first hand. THANK YOU, THANK YOU, THANK YOU to all of Ethan's teachers! We are so blessed to be under your care & knowledge. You have all impacted this family's life for the better in so many ways. We love you!!!!!
Matthew 19:14 But Jesus said, "Let the little children come to me
and do not forbid them for of such is the kingdom of Heaven." Amen!
Wednesday, May 9, 2012
Road Trip
Last weekend, my dad graduated with his Doctorate of Ministry degree. He has been working towards this goal for as long as I can remember. I remember going to his graduation for his Master's degree when I was in high school....that was more than 10 years ago. Well, I was NOT about to miss this momentous occasion.
The question was whether or not to take Ethan. Traveling long distances with Ethan in the past has not been the easiest. It is hard for him to sit for that long. But we decided that we should try. So, being the annoyingly organized & plan ahead type, I got to work. I was reading & doing all I could to prepare for the trip. I bought & wrapped dollar store toys for Ethan & his cousin to open every hour (or as needed). I bought new DVDs of Dora (his new favorite show) in order to keep him entertained. I packed an abundance of OT items. I even got some great advice from the mom's at our church's weekly playgroup. I was ready for anything!
And guess what! ETHAN DID AWESOME!!!! He barely needed his OT items except for sleeping & during the graduation festivities. But traveling in the van, he didn't have any behavior problems! He just chewed a lot. But, he was super content with his DVD player (which is strange because he doesn't really watch TV at home), and his iPad games/books. I am so glad that we took him with us! We had a great time, and it was a victory for our family! YEAH!
The question was whether or not to take Ethan. Traveling long distances with Ethan in the past has not been the easiest. It is hard for him to sit for that long. But we decided that we should try. So, being the annoyingly organized & plan ahead type, I got to work. I was reading & doing all I could to prepare for the trip. I bought & wrapped dollar store toys for Ethan & his cousin to open every hour (or as needed). I bought new DVDs of Dora (his new favorite show) in order to keep him entertained. I packed an abundance of OT items. I even got some great advice from the mom's at our church's weekly playgroup. I was ready for anything!
And guess what! ETHAN DID AWESOME!!!! He barely needed his OT items except for sleeping & during the graduation festivities. But traveling in the van, he didn't have any behavior problems! He just chewed a lot. But, he was super content with his DVD player (which is strange because he doesn't really watch TV at home), and his iPad games/books. I am so glad that we took him with us! We had a great time, and it was a victory for our family! YEAH!
Here are some pictures from our trip!
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| Corey driving & Uncle Scott navigating |
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| Aunt Rachel reading & Ethan. He has a pacifier because he was chewing on his fingers & this was the only oral toy that I had in my purse at the time. |
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| Ethan watching his DVD player. The cookie sheet idea was from my friend, Jessica. She directed me to this website where you can do all kinds of things with the cookie sheet for travel. It was the BEST IDEA EVER! |
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| Ethan's cute feet! |
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| Both of the boys had their own DVD players & headphones. Here they are enjoying a snack (with magnets on the bottom of their snack containers to keep them from spilling) while watching their favorite DVDs. |
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| My nephew hamming it up for the camera...I love it! |
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| Both boys were restless before the graduation ceremony started. |
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| Corey took them for a walk around the gym's walkway. |
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| Ethan playing with stickers during the graduation. He only needed his headphones during the music. |
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| Dad is showing Ethan the words on his degree cover...and Ethan is reading it! We were trying to get Ethan to stand next to them for a picture. |
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| The whole clan! |
Tuesday, May 8, 2012
Bored with English?!
Even though Ethan has difficulties with many things, he has a super power. He LOVES to learn. He was reading before he was 3 years old, and currently is discovering math facts. It's amazing how he can absorb this information....and retain it!
Well, for awhile now, Ethan has been changing all of his games/books on the iPad to any language other than English. A couple of weeks ago, instead of telling me thank you, he instead said, "Grazie!" I really didn't know what to say, so I just said, "You're welcome." I'm so not a cool mom. HA!
This weekend, we went on a long road trip, and he watched several episodes of his new favorite, Dora The Explorer. At some point during the trip, I asked him a yes or no question. He replied with, "Si." Unbelievable!
So...now I need to be learning Italian, Spanish, Japanese (from his Cars 2 books), and French. These are the languages that I have observed him switching to in order to listen to his books in a new language. If he is only 3 years old and soaking all of this up, what am I going to do when he is in grade school? I guess we will cross that road when we get to it, but for now enjoy these videos of Ethan teaching himself new languages. LOVE THIS KID!!!!
Well, for awhile now, Ethan has been changing all of his games/books on the iPad to any language other than English. A couple of weeks ago, instead of telling me thank you, he instead said, "Grazie!" I really didn't know what to say, so I just said, "You're welcome." I'm so not a cool mom. HA!
This weekend, we went on a long road trip, and he watched several episodes of his new favorite, Dora The Explorer. At some point during the trip, I asked him a yes or no question. He replied with, "Si." Unbelievable!
So...now I need to be learning Italian, Spanish, Japanese (from his Cars 2 books), and French. These are the languages that I have observed him switching to in order to listen to his books in a new language. If he is only 3 years old and soaking all of this up, what am I going to do when he is in grade school? I guess we will cross that road when we get to it, but for now enjoy these videos of Ethan teaching himself new languages. LOVE THIS KID!!!!
Monday, May 7, 2012
My Church Party
What I am about to share with you is something that I can't believe I'm going to actually say out loud....well....write out loud. But, since my main goal is complete honesty...the good, the bad, and the ugly me without coffee....here it goes.
Growing up in church, I went to every church function. My parents philosophy was, "If the doors are open, we are going." And because of this and the way they lived their lives, I began my own personal relationship with Christ when I was in 5th grade. I was very fortunate to have parents who taught me about Jesus as well as lived their lives according to His ways. I knew that I wanted to have a relationship with Him too.
Fast forward to a few years ago, 6 months after Ethan was born, to the new devotional book that my husband and I were reading through together. Night Light for Parents: A Devotional written by Dr. James Dobson & his wife Shirley. It is a great book. But one question posed in this book was, "What did your parents do or didn't do that helped you come to know Christ?" Well, both my husband and I gave our lives to Christ when we were young, and we want that for Ethan as well. So, we decided that we would continue to attend church "every time the doors were open" as well as continue to live our lives for Him. We just re-committed ourselves to doing this having the new realization that this could help lead our child to a life with Jesus.....our biggest desire for him.
So that was the plan. Sunday morning Sunday school, Sunday morning church services, Sunday night service, Wednesday night service, and all of the events & activities in between. It also helps that we LOVE our church. This is actually where Corey & I met & eventually married. Both of our families attend here, so ALL......yes ALL of Ethan's cousins go to this same church. It is home away from home.
However, the last year has been a real struggle to keep this commitment due to Ethan's sensory challenges. After 3 hours in his new classroom, we would find him spinning in circles in the middle of the room during the kids free-play time. After several Sundays of this, I could take no more. We had to cut down his time in this classroom....it was just too much for him.
So, now we are only going to Sunday morning Service and not Sunday school. Why do we no longer do Sunday night or Wednesday night? Because, since Ethan rarely naps anymore, he goes go bed very early. And if we mess with his sleeping schedule, he is harder to communicate with & he has more meltdowns as well as other difficulties. We don't mess with his sleep unless we HAVE to....it's too hard on him.
This doesn't mean that we don't love Jesus or our church, but our church "plan" has been altered. So, instead, we ABSORB Ethan's Sunday School class that he does attend. We do most of the recommended activities sent home that corresponds with the curriculum. We write, post, and practice the newest memory verse. We read the weekly story in Ethan's kid Bible at night. I even change my the desktop picture on my computer to match his Bible story of the week.
So....the new plan is FLEXIBILITY! Church is still a very high priority for us, but it looks differently than we had planned. Why is this such a struggle for me? Why is this such a big deal? Because it's part of the "dream" being lost. Because it's not how I was raised. Because it's not what we had planned. And that is hard for me.
However, I am finding encouragement as I read through God's Word. I am reminded of Paul who was under house arrest, and could not be with the church as he wanted. And during this time, he wrote these words..."And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28. And this is helping me during this time of heartache.
But, this has been soooo much better for Ethan. He now calls church "My Church Party." LOVE! He loves going and no more spinning. And soon I'm sure he will be able to handle more. But for now, this is where we are.....and I am trying to be okay with it but it is hard. I miss my Sunday school class. I miss my Bible study. But it is what is best for Ethan right now, and this mama will ALWAYS do what is best for him. And when he says, excitedly, "Let's go to my church party!".....it is worth it!
Growing up in church, I went to every church function. My parents philosophy was, "If the doors are open, we are going." And because of this and the way they lived their lives, I began my own personal relationship with Christ when I was in 5th grade. I was very fortunate to have parents who taught me about Jesus as well as lived their lives according to His ways. I knew that I wanted to have a relationship with Him too.
Fast forward to a few years ago, 6 months after Ethan was born, to the new devotional book that my husband and I were reading through together. Night Light for Parents: A Devotional written by Dr. James Dobson & his wife Shirley. It is a great book. But one question posed in this book was, "What did your parents do or didn't do that helped you come to know Christ?" Well, both my husband and I gave our lives to Christ when we were young, and we want that for Ethan as well. So, we decided that we would continue to attend church "every time the doors were open" as well as continue to live our lives for Him. We just re-committed ourselves to doing this having the new realization that this could help lead our child to a life with Jesus.....our biggest desire for him.
So that was the plan. Sunday morning Sunday school, Sunday morning church services, Sunday night service, Wednesday night service, and all of the events & activities in between. It also helps that we LOVE our church. This is actually where Corey & I met & eventually married. Both of our families attend here, so ALL......yes ALL of Ethan's cousins go to this same church. It is home away from home.
However, the last year has been a real struggle to keep this commitment due to Ethan's sensory challenges. After 3 hours in his new classroom, we would find him spinning in circles in the middle of the room during the kids free-play time. After several Sundays of this, I could take no more. We had to cut down his time in this classroom....it was just too much for him.
So, now we are only going to Sunday morning Service and not Sunday school. Why do we no longer do Sunday night or Wednesday night? Because, since Ethan rarely naps anymore, he goes go bed very early. And if we mess with his sleeping schedule, he is harder to communicate with & he has more meltdowns as well as other difficulties. We don't mess with his sleep unless we HAVE to....it's too hard on him.
This doesn't mean that we don't love Jesus or our church, but our church "plan" has been altered. So, instead, we ABSORB Ethan's Sunday School class that he does attend. We do most of the recommended activities sent home that corresponds with the curriculum. We write, post, and practice the newest memory verse. We read the weekly story in Ethan's kid Bible at night. I even change my the desktop picture on my computer to match his Bible story of the week.
So....the new plan is FLEXIBILITY! Church is still a very high priority for us, but it looks differently than we had planned. Why is this such a struggle for me? Why is this such a big deal? Because it's part of the "dream" being lost. Because it's not how I was raised. Because it's not what we had planned. And that is hard for me.
However, I am finding encouragement as I read through God's Word. I am reminded of Paul who was under house arrest, and could not be with the church as he wanted. And during this time, he wrote these words..."And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28. And this is helping me during this time of heartache.
But, this has been soooo much better for Ethan. He now calls church "My Church Party." LOVE! He loves going and no more spinning. And soon I'm sure he will be able to handle more. But for now, this is where we are.....and I am trying to be okay with it but it is hard. I miss my Sunday school class. I miss my Bible study. But it is what is best for Ethan right now, and this mama will ALWAYS do what is best for him. And when he says, excitedly, "Let's go to my church party!".....it is worth it!
Thursday, May 3, 2012
Labels
I always kid my sister about her "awareness" to labels. Whenever we go to garage sales, she is looking for labels......Old Navy, Gap Kids, Oshkosh, Carter's, Ralph Lauren, Nike, Levi and so on. Or she'll say things like, "I paid $30 for a brand new pair of Nikes!".....not shoes.....Nikes. LOL. And I think a lot of people do the same thing. Why do we do this? Because we know what to expect from the label. We already know about how it will fit us, how long it will last, or how great of a price we got! It's not that we got around looking at each other tags to see if we are wearing a great brand name, it's that we are familiar with the label & it helps make our shopping a bit easier.
There is a lot of discussion when it comes to labeling kiddos with special needs. My personal feeling about using a label is that it is similar to shopping for name brands. Strange to say, I know. But here is why....
1. When Ethan's behavior is turning heads or we begin to receive questionable looks, I can explain it all away in a few words. "My son has autism." Most of the time, this is followed by a look of understanding or the start of a conversation (which I love) about autism. Occasionally, I will receive a look of pity or a harsh comment, but honestly that has been a rare occurrence. My family is currently planning for a road trip, and I came across these cards like this one to pass out in community settings, if need be. I actually kind of love them! The one pictured here was created by thirtyhandmadedays.
2. It provides the needed services! Having the diagnosis of autism has opened us to a whole new world of opportunities and resources for Ethan. Early Intervention, Ethan's current (and amazing) preschool, Easter Seals, AutismSpeaks, our park district's special needs program and more! All of these have been available to us due to having the "label" on paper. Ethan is able to have MORE help! I love it!
3. It has helped Corey & I to connect to other parents of special needs kids. Being a parent of a child with autism can be lonely because no one else in your world understands what it feels like or what your daily life is like. But, if I look up an "autism support group," I am able to find other people going through similar things, and.....once again.....support is there.
Is Ethan defined only by this label? No. Will I feel differently about this label as he gets older? Possibly. Does having this label lead to negative treatment. Absolutely. But, at this time our lives, wearing this label is MORE beneficial than not. And, even though every person on the autism spectrum has different challenges as well as their own unique super powers, I believe that wearing the autism label can help the lines of communication in our society. When others hear this label, they generally know what to expect, what behavior that looks like and....what I love......how to be helpful, loving and supportive. Society is becoming familiar with this label, and that is making living with autism easier. So this mama is wearing her label proudly!!!!
There is a lot of discussion when it comes to labeling kiddos with special needs. My personal feeling about using a label is that it is similar to shopping for name brands. Strange to say, I know. But here is why....
1. When Ethan's behavior is turning heads or we begin to receive questionable looks, I can explain it all away in a few words. "My son has autism." Most of the time, this is followed by a look of understanding or the start of a conversation (which I love) about autism. Occasionally, I will receive a look of pity or a harsh comment, but honestly that has been a rare occurrence. My family is currently planning for a road trip, and I came across these cards like this one to pass out in community settings, if need be. I actually kind of love them! The one pictured here was created by thirtyhandmadedays.
2. It provides the needed services! Having the diagnosis of autism has opened us to a whole new world of opportunities and resources for Ethan. Early Intervention, Ethan's current (and amazing) preschool, Easter Seals, AutismSpeaks, our park district's special needs program and more! All of these have been available to us due to having the "label" on paper. Ethan is able to have MORE help! I love it!
3. It has helped Corey & I to connect to other parents of special needs kids. Being a parent of a child with autism can be lonely because no one else in your world understands what it feels like or what your daily life is like. But, if I look up an "autism support group," I am able to find other people going through similar things, and.....once again.....support is there.
Is Ethan defined only by this label? No. Will I feel differently about this label as he gets older? Possibly. Does having this label lead to negative treatment. Absolutely. But, at this time our lives, wearing this label is MORE beneficial than not. And, even though every person on the autism spectrum has different challenges as well as their own unique super powers, I believe that wearing the autism label can help the lines of communication in our society. When others hear this label, they generally know what to expect, what behavior that looks like and....what I love......how to be helpful, loving and supportive. Society is becoming familiar with this label, and that is making living with autism easier. So this mama is wearing her label proudly!!!!
Wednesday, May 2, 2012
Our New Sensory Toy!
Well, folks, it is an early garage sale season here, and I am already finding some good sensory items!!!! My favorite find so far has been a new light for Ethan's room. Ethan & I were on the hunt for a car (what he always looks for when we go to garage sales.....and I like that it's usually $.25 to keep him content!), and we stumbled across several lamps that the owner had plugged in & had turned on....very smart. As we walked past this section, Ethan stopped his anxious car-searching behavior & stared at the lamps. I wish I had a picture of this moment. I knew exactly which lamp had caused him to calm down, and I wanted it! Then, Ethan says, "I like that fish light." SOLD!!!!
Well worth the $2.00, but the lamp did need some attention.....
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| As you can see, the water level was low. |
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| With the water level so low, the swimming fish didn't have much room to swim. |
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| Here are the 3 fish...yellow, red & blue. These are also the 3 colors through which the water color changes. |
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| So, I bought some distilled water at Wal-mart. |
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| Now that the tube is full of water, we have more bubbles & the fish have more room to move. |
Here is a clip of our new sensory lamp!
It has soothing lights, bubbles, moving fish, and a quiet hum...it's perfect for Ethan!!!
Here are a few pictures of "professional grade" sensory rooms that I drool over, but they are very costly. So anything that I can make, buy or find that comes close to these relaxing, calming, therapeutic rooms....I will take! Aren't these amazing!?!?
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