Ethan had a really big week last week, and I am still so happy about his accomplishments....giving up the pacifier, learning to poop on the potty, etc. However, this week.....whoa. This week has been ROUGH. I'm not sure why but this week Ethan has been especially sensitive which means more things have set him off. It could be that he is sleeping less because he is still trying to learn how to self-soothe himself to sleep. It could be a growth spurt. It could be his age. It could be that he doesn't feel well. It could be that he had a big developmental week last week, and this week he is regressing a little.....two steps forward, one step back. Whatever the reason, this week has been extremely challenging as his mother & his full-time care taker.
But, it's Celebration Sunday, and I am looking on the bright side of things. Today I am celebrating the activities that we CAN do together as a family. There are so many things that affect Ethan, and therefore limit our outings as a family. But....we can do several "typical" activities that surprisingly do not paralyze Ethan.
1. Movies - We can go to the movies! This summer, I contacted a program called Lights Up, Sound Down. Cars 2 was coming out & Ethan LOVES cars.....well....anything with wheels. Ethan had never been to the movie theater before, and we were worried that he couldn't handle all of the visual/audio stimulation. So, I found this program, and they were able to coordinate with our local movie theater to provide this service. They literally show the movie in the theater, but leave the lights on & turn the sound down. They were also able to cut out some of the previews which tend to be very "flashy"....like a strobe-light to visually sensitive people. Ethan did great! He ate the WHOLE time (which provided the oral input that is calming for him), and he had in his ear plugs. About halfway through the movie he took his ear plugs out! The only scary part for Ethan was the "tunnel-like" walkway through the theater....from the "Theater #3" Door to the actual seats. He wouldn't step foot in that tunnel no matter how much we tried. So, I just picked him up & carried him through it while he screamed & cried. I imagine it was little like a haunted house for him. But once we came out of the other side & he saw the "big TV" and people sitting in the seats, he calmed right down. It was a wonderful first movie experience. And, yes, I cried.
Well, a couple of weekends ago, The Winnie the Pooh movie came to theaters. We decided to tip our toe in the water & try a "regular" movie. This movie was only an hour long, and if it didn't go well, we were only going to be out $4 per person (10am showing). So, we started out with our tools in hand....ear plugs, weighted lap pad (he didn't use it the last time, but just in case), his drink in a sports bottle, suckers, chew necklace....and money for lots of popcorn (he LOVES popcorn....eats it the whole time). However, Ethan...being the extremely visual child that he is....saw the Cars 2 advertisement! We kept trying to get him to be excited about Pooh, but he kept saying, "No.....Cars2? Yes!" And to be honest, it was the better deal! $4 per person for an hour movie or $4 per person for a 2.5 hour movie. OK....Cars 2 it is! And he did great! Same thing....ate popcorn the whole time (he went through a large all on his own...which is not his normal eating style), and again....halfway through the ear plugs came out!!! And, yes, I cried again. So...it goes on this list...movies! YEAH!!!!!
2. Bowling - Now...talk about over-stimulation????!!!!!! Sometimes I think maybe I know too much about Ethan, and therefore prevent him from situations I know will be hard for him to deal with just yet. And I would put bowling on the NO list. However, we tried bowling when our church rented out a bowling alley one Sunday night. We decided if there was ever a good time to try it, it would be then. He LOVED IT!!!!!! And the bowling alley was packed with people!!!! The weekend bowling tournament that was supposed to be over by the time we showed up was still going on, so there were tons of people & tons of noises...and Ethan LOVED IT! YEAH!!!!! Put it on the list! (And, yes, I cried.)
3. Swimming - My kid LOVES to be in the water. Waterparks are a little tricky because of the music they pipe through the place, but as long as we are away from a sound speaker, he is good. And once he is in the water, nothing else exists. He still can't swim yet, but we just keep a life jacket on him & stay close to him. He loves it.....jumping in the pool, splashing the water, going down the slides...all of it. It definitely goes on the list! (Yep.....cried.)
4. Race Car Events - I know this may seem like a no-brainer, but race cars are VERY loud in person as opposed to hearing them on TV. But the loud sounds of a car don't seem to bother Ethan....again, he LOVES IT! He still wears his ear plugs, but everyone does at those events. It is very loud. The only part that makes Ethan cry is in between races when the cars stop making sound & stop moving. But this isn't a "sensory-cry"....it's a child not getting what he wants cry...and those are much better than the other. There isn't fear in the 2nd type of cry. (And even though I wasn't there for this event, I did cry when Corey texted me that Ethan was having a great time.)
There are lots of things that Ethan CAN do, but they aren't as hard on his senses.......playing at the park, going shopping, visiting the zoo, going out to eat, etc. The things on our list are activities that are surprises....outings that we didn't think Ethan could handle (like the Fourth of July fireworks). But he surprised us, and in fact, loves these things. We will continue to try new things and help Ethan either endure them or enjoy them. It is always my hope that a new situation will be enjoyable for him, and, therefore, enjoyable for all of us. Sometimes it is and sometimes it definitely is not. But how else will be know unless we try! He is always surprising us! And, yes, that makes me cry too!
Sunday, July 31, 2011
Wednesday, July 27, 2011
How did you know? FINAL
Ethan was placed on a waiting list for the Easter Seals diagnostic clinic in October 2010. The earliest they could get him into the clinic that was closest to us was July 2011....9 months away. Ugh. Or we could go to a clinic that was an hour away, and they could get him in in May 2011....7 months. So, we chose the later. And, so, began the LLLLLOOOOOOONNNNNNNNGGGGGGGG anxiety filled countdown. The whole time we were waiting for the clinic, we were still trying to diagnose him ourselves. Does he have it or not? If so, what can we do for him. What are his specific issues. We were driving ourselves crazy. May couldn't get here fast enough.
In the meantime, he continued with the Early Intervention Program. He quickly started his developmental playgroup twice a week. And he loved it! He loved going to "school". When we would get there, he would run right in....no goodbyes or tears or apprehension....he loved it! And he thrived....this was one of the best things for him. We also started him in speech therapy. A speech therapist would come to our home once a week for an hour. I thought this would be wonderful, but Ethan had a difficult time focusing. Since he was in his own home, he wouldn't change his behavior simply because the therapist was there. He would play with her toys, but he wouldn't engage with her. He would take the toys behind a chair....he wanted the toys, but he didn't want to talk. So, we called Glenda our Fairy Godmother, and she found us a speech therapist at our local hospital. Ethan did soooo much better because it was a new environment. When he went into the speech room, he knew he was going to have to talk. We had good sessions and bad sessions, but it was much better for Ethan to go to her. This is also the same place we had Ethan's occupational therapy.
Ethan didn't start occupational therapy until after Christmas 2010. The Early Intervention Program put on a Christmas party for it's staff & students. I was so excited. We were going to finally meet parents & families going through the same things we were facing. I dressed Ethan in his cutest Christmas shirt & off we went to our local library....were the party was going to be held. When we walked in, Ethan wanted to go to the right...where we normally go on our weekly library day. However, the party was in a room to the left. Meltdown #1. I should have known at that moment that things were not going to go like I had hoped. Once I finally coaxed Ethan into going into the party room, he was met by one of his playgroup teachers. We also saw Glenda our Fairy Godmother. They led us over to the tables where Ethan could make a snowman craft. He did it with his teacher. Then he wanted to play with the balls that the children were throwing in different containers (like the bags game). Well...we told him he couldn't take the balls out of the containers. He had to wait in line for his turn & then throw the balls......meltdown #2. Then, once he recovered, they had us all gather for story time. He did fine. Then they handed each child a bell to ring as they sang Christmas songs. HUGE meltdown #3. So, I took Ethan out of the party room & into the bathroom.....a quiet place where he could calm down. Little did I know that the bathrooms had movement activated hand dryers that went off as soon as you walked into the bathroom. MAJOR MELTDOWN #4....MAYDAY, MAYDAY, WE ARE GOING DOWN! Ethan was so upset, he was crying without sound. It was horrible. Once the dryer went off, we both sat on the floor in the corner of the bathroom, rocking & crying...both of us. It was awful. Once we both recovered, we exited the bathroom to a group of about 10 concerned staff members all trying to help Ethan & I.....meltdown #5. All Ethan was saying was, "bye-bye?" over & over again. I just told the staff thanks, but we were going to go home. They were all so sweet & understanding. They gave Ethan his gifts, party snacks, and a bag of other goodies. This was the worst day of my life. Alone again. We didn't even fit in here.
But, ironically, it wasn't the worst day ever. Because of this, the PARENTS at the party told Glenda our Fairy Godmother that their child suffered from similar sound issues, but because they were working with an occupational therapist, they were able to "endure" the party. Glenda called me with the idea of starting Ethan with an OT, and I quickly agreed. We were both crying...both of us upset for Ethan. I wasn't alone.
And over the last several months, we met more & more families, staff, and shirt-tail friends that were dealing with similar things. And even our family & friends were beginning to see/understand our situation. We weren't alone, and we were starting to reach out for help & support from everyone that would let us. Ethan continued with playgroup, speech & OT. And it finally came....May 4th at 7:30am.....the Easter Seals Diagnosis Clinic was about to focus their attention to our child. The day was long, but Ethan was AMAZING! He didn't have ANY meltdowns even with the new surroundings, sounds, and people. Prayer works baby! We felt that everyone who was observing & studying Ethan got to see the real Ethan...his strengths & weaknesses. Testing concluded at noon, and we were to meet the panel back sometime that afternoon. They would call us when they had reached their conclusion. So, my mom took Ethan home with her (she works in that town..she took a half day), and Corey & I stayed in town. We went to lunch & discussed the day. We both felt that whatever decision was made was going to be accurate...we both felt that they had heard/witnessed all of our concerns as well as experienced Ethan's sweet personality. They got a crash course in Ethan, and we both felt that that outcome would be a true reflection of our child.
So, they called us back about 2pm. They sat us down, showed us his scores, where he fell within the range for each one, discussed the video we had made, and on & on & on. And then the announcement. Ethan has "classic" autism. You would think I would have lost it, but strangely I felt relief. The waiting was over, the long day was over, and the jury had spoke what I knew to be true. Yes, I was still sad....and overwhelmed at the journey ahead.....but we now had even more resources...more people to help us & Ethan. I was relieved.
This was just a new beginning for Ethan & our family, but with the help of some amazing people placed in our life, Ethan is thriving! He is spelling more words today than he was SAYING a year ago. And Ethan's story is just one of many. But I am so thankful & blessed to be Ethan's mommy. He is my entire heart, and I will do whatever it takes to help him, to reach him, to support him, and to love him. And even autism won't stop Ethan....just wait & see.
In the meantime, he continued with the Early Intervention Program. He quickly started his developmental playgroup twice a week. And he loved it! He loved going to "school". When we would get there, he would run right in....no goodbyes or tears or apprehension....he loved it! And he thrived....this was one of the best things for him. We also started him in speech therapy. A speech therapist would come to our home once a week for an hour. I thought this would be wonderful, but Ethan had a difficult time focusing. Since he was in his own home, he wouldn't change his behavior simply because the therapist was there. He would play with her toys, but he wouldn't engage with her. He would take the toys behind a chair....he wanted the toys, but he didn't want to talk. So, we called Glenda our Fairy Godmother, and she found us a speech therapist at our local hospital. Ethan did soooo much better because it was a new environment. When he went into the speech room, he knew he was going to have to talk. We had good sessions and bad sessions, but it was much better for Ethan to go to her. This is also the same place we had Ethan's occupational therapy.
Ethan didn't start occupational therapy until after Christmas 2010. The Early Intervention Program put on a Christmas party for it's staff & students. I was so excited. We were going to finally meet parents & families going through the same things we were facing. I dressed Ethan in his cutest Christmas shirt & off we went to our local library....were the party was going to be held. When we walked in, Ethan wanted to go to the right...where we normally go on our weekly library day. However, the party was in a room to the left. Meltdown #1. I should have known at that moment that things were not going to go like I had hoped. Once I finally coaxed Ethan into going into the party room, he was met by one of his playgroup teachers. We also saw Glenda our Fairy Godmother. They led us over to the tables where Ethan could make a snowman craft. He did it with his teacher. Then he wanted to play with the balls that the children were throwing in different containers (like the bags game). Well...we told him he couldn't take the balls out of the containers. He had to wait in line for his turn & then throw the balls......meltdown #2. Then, once he recovered, they had us all gather for story time. He did fine. Then they handed each child a bell to ring as they sang Christmas songs. HUGE meltdown #3. So, I took Ethan out of the party room & into the bathroom.....a quiet place where he could calm down. Little did I know that the bathrooms had movement activated hand dryers that went off as soon as you walked into the bathroom. MAJOR MELTDOWN #4....MAYDAY, MAYDAY, WE ARE GOING DOWN! Ethan was so upset, he was crying without sound. It was horrible. Once the dryer went off, we both sat on the floor in the corner of the bathroom, rocking & crying...both of us. It was awful. Once we both recovered, we exited the bathroom to a group of about 10 concerned staff members all trying to help Ethan & I.....meltdown #5. All Ethan was saying was, "bye-bye?" over & over again. I just told the staff thanks, but we were going to go home. They were all so sweet & understanding. They gave Ethan his gifts, party snacks, and a bag of other goodies. This was the worst day of my life. Alone again. We didn't even fit in here.
But, ironically, it wasn't the worst day ever. Because of this, the PARENTS at the party told Glenda our Fairy Godmother that their child suffered from similar sound issues, but because they were working with an occupational therapist, they were able to "endure" the party. Glenda called me with the idea of starting Ethan with an OT, and I quickly agreed. We were both crying...both of us upset for Ethan. I wasn't alone.
And over the last several months, we met more & more families, staff, and shirt-tail friends that were dealing with similar things. And even our family & friends were beginning to see/understand our situation. We weren't alone, and we were starting to reach out for help & support from everyone that would let us. Ethan continued with playgroup, speech & OT. And it finally came....May 4th at 7:30am.....the Easter Seals Diagnosis Clinic was about to focus their attention to our child. The day was long, but Ethan was AMAZING! He didn't have ANY meltdowns even with the new surroundings, sounds, and people. Prayer works baby! We felt that everyone who was observing & studying Ethan got to see the real Ethan...his strengths & weaknesses. Testing concluded at noon, and we were to meet the panel back sometime that afternoon. They would call us when they had reached their conclusion. So, my mom took Ethan home with her (she works in that town..she took a half day), and Corey & I stayed in town. We went to lunch & discussed the day. We both felt that whatever decision was made was going to be accurate...we both felt that they had heard/witnessed all of our concerns as well as experienced Ethan's sweet personality. They got a crash course in Ethan, and we both felt that that outcome would be a true reflection of our child.
So, they called us back about 2pm. They sat us down, showed us his scores, where he fell within the range for each one, discussed the video we had made, and on & on & on. And then the announcement. Ethan has "classic" autism. You would think I would have lost it, but strangely I felt relief. The waiting was over, the long day was over, and the jury had spoke what I knew to be true. Yes, I was still sad....and overwhelmed at the journey ahead.....but we now had even more resources...more people to help us & Ethan. I was relieved.
This was just a new beginning for Ethan & our family, but with the help of some amazing people placed in our life, Ethan is thriving! He is spelling more words today than he was SAYING a year ago. And Ethan's story is just one of many. But I am so thankful & blessed to be Ethan's mommy. He is my entire heart, and I will do whatever it takes to help him, to reach him, to support him, and to love him. And even autism won't stop Ethan....just wait & see.
Monday, July 25, 2011
How did you know? PART THREE
By March 2010, Ethan's speech was still very sparse, but we were hoping the tubes in his ears would be just the thing to encourage his language growth. Also, Ethan was 21 months old, and his behavior was starting to become an issue. Nothing out of the ordinary....typical toddler stuff. So, my sister let me borrow her book Dare To Discipline by Dr. James Dobson. As I was reading this book, I came across a section that talked about exceptions to the rule...what that rule was, I don't know. But what I remember was he was giving an example of a child with autism & the child's particular characteristics. The ones I remember were walking on tippy-toes, delayed speech, and lack of eye contact. There were more, but those are only ones I can remember now. And I remember reading that section over & over again.....and crying. It was Ethan. That was the moment that I knew. The words on the pages were describing my child. Well...I stopped reading that book, and began reading about autism. The more I read the more I knew in my gut that this is what my child was dealing with at his young age.
I wasn't about to tell anyone about my findings other than my husband, my mom & my sister....the people that know me the most in this world. All of them discounted it, saying to give the tubes time to "work". By Ethan's 2nd birthday, he was becoming more withdrawn from his peers and family. We saw his peers developing social skills that Ethan was clearly lacking. I remember one day a family member asked me if I ever thought about Ethan having autism. I was heartbroken. My shameful secret was out. I played it off as if I hadn't, but I was dying inside. We couldn't ignore the signs any longer.
Late the Summer of 2010, we were at our town's annual festival parade. I was looking forward to Ethan & I watching the floats, clapping & dancing to the bands, collecting candy in our bag, and enjoying a celebration that I look forward to every year. My plans didn't exactly go as planned. What's that saying? If you want to make God laugh, tell Him your plans! Ethan wouldn't go near the street, so we decided to just keep him close to the house but still outside. He wasn't happy there either. So, we watched the parade alone in the house...looking out the window. This, I decided, was my new life. Watching the world happen from the window of my house....just me, my husband & Ethan. I was devastated. We were alone.
A few weeks later, a friend of ours who was at the parade with us, told us about an Early Intervention Program. She told us that this program provided free screening. They would check his development in every area. HALLELUJAH! A resource that could help us! So, I immediately contacted them. Ethan & I went in for the the screening. Out of 7 areas....Ethan was delayed in all of them....severely delayed in 2 or 3. (I can't remember exactly.) You would think this would be a low point, but it wasn't. They were going to assign us a coordinator who would be able to do further screenings as well as hook us up with any needed services that Ethan would need. HELP WAS COMING FOR MY BABY!!!!! This was a major turning point! This is were we met Glenda - Our Fairy Godmother.
Glenda met with me & we talked all about Ethan....pregnancy, birth, development and so on. After the interview, she set up a time for her & two therapists to come & play with Ethan. The day arrived and everyone was present.....me, Corey, Glenda the Fairy Godmother, a speech therapist and a developmental therapist. They played with him for about an hour. When it was over, it was decided that Ethan would be placed in a developmental playgroup twice a week, participate in speech therapy, and his name would be submitted to the Easter Seals Autism Diagnosis Clinic.
I wasn't about to tell anyone about my findings other than my husband, my mom & my sister....the people that know me the most in this world. All of them discounted it, saying to give the tubes time to "work". By Ethan's 2nd birthday, he was becoming more withdrawn from his peers and family. We saw his peers developing social skills that Ethan was clearly lacking. I remember one day a family member asked me if I ever thought about Ethan having autism. I was heartbroken. My shameful secret was out. I played it off as if I hadn't, but I was dying inside. We couldn't ignore the signs any longer.
Late the Summer of 2010, we were at our town's annual festival parade. I was looking forward to Ethan & I watching the floats, clapping & dancing to the bands, collecting candy in our bag, and enjoying a celebration that I look forward to every year. My plans didn't exactly go as planned. What's that saying? If you want to make God laugh, tell Him your plans! Ethan wouldn't go near the street, so we decided to just keep him close to the house but still outside. He wasn't happy there either. So, we watched the parade alone in the house...looking out the window. This, I decided, was my new life. Watching the world happen from the window of my house....just me, my husband & Ethan. I was devastated. We were alone.
A few weeks later, a friend of ours who was at the parade with us, told us about an Early Intervention Program. She told us that this program provided free screening. They would check his development in every area. HALLELUJAH! A resource that could help us! So, I immediately contacted them. Ethan & I went in for the the screening. Out of 7 areas....Ethan was delayed in all of them....severely delayed in 2 or 3. (I can't remember exactly.) You would think this would be a low point, but it wasn't. They were going to assign us a coordinator who would be able to do further screenings as well as hook us up with any needed services that Ethan would need. HELP WAS COMING FOR MY BABY!!!!! This was a major turning point! This is were we met Glenda - Our Fairy Godmother.
Glenda met with me & we talked all about Ethan....pregnancy, birth, development and so on. After the interview, she set up a time for her & two therapists to come & play with Ethan. The day arrived and everyone was present.....me, Corey, Glenda the Fairy Godmother, a speech therapist and a developmental therapist. They played with him for about an hour. When it was over, it was decided that Ethan would be placed in a developmental playgroup twice a week, participate in speech therapy, and his name would be submitted to the Easter Seals Autism Diagnosis Clinic.
Why Moms of Special-Needs Kids ROCK!
Today was a rough day with Ethan. He wanted to stay in his world, and every time I tried to engage with him...it was meltdown after meltdown. When those days happen....and yes I said WHEN....I find encouragement from several sources. I would like to share one with you...the one that helps me through a lot of days. I found this in an AllYou magazine article a couple of months ago. I cut it out & put in on my fridge. Hope you enjoy!
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we manage to get ourselves together and get out the door looking pretty darn good. Heck, we even make sweatpants look good.
7. Because we are strong. Who knew we could be this strong?
8. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders.
10. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
11. Because we never stop pushing, or hoping, for our kids.
13. Because when we look at our kids we just see great kids. Not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label.
Why Moms of Special-Needs Kids ROCK! (Adapted from lovethatmax.com)
1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we manage to get ourselves together and get out the door looking pretty darn good. Heck, we even make sweatpants look good.
7. Because we are strong. Who knew we could be this strong?
8. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders.
9. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family.
10. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
11. Because we never stop pushing, or hoping, for our kids.
12. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
13. Because when we look at our kids we just see great kids. Not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label.
Discovering Ethan's Sensory Diet
As I have talked about before, one child diagnosed with autism does not have the same set of challenges as another child. One part of Ethan's specific diagnosis is Sensory Processing Disorder. The way to help Ethan overcome this disorder is to have him participate in Occupational Therapy. During the first several weeks of OT, we investigated Ethan & his senses in order to develop a personal sensory diet. The first systems that the therapist had us look at were Ethan's Proprioceptive & Vestibular Systems. This was my first experience in the field of OT, and it amazed me! And still does.
The proprioceptive system "tells us about our own movement or body position. The receptors are in the muscles, joints, ligaments, tendon, and connective tissue." For Ethan, this is a weak system. He isn't aware of his own body movement & positions....making him appear to be clumsy. He trips over his own feet, walks into walls, falls out of chairs, and bumps into other children which puts him in the "under-responsive" category. Because of this, Ethan needs activities that will tap into this specific system, or sensory input, in order to help him overcome his "clumsiness". So, for 2 weeks, we tried different activities & recorded Ethan's responses. The therapist gave us a list of 71 activities that may or may not work with Ethan...and I tried them all.
Here is what our research discovered - Ethan & his proprioceptive system responded well to...
1. Jumping & bouncing
2. Pushing & pulling heavy objects
3. Weighted items (lap pads, heavy blankets, medicine balls)
4. Crashing into or being squished by couch cushions
5. Playdoh, stretchy tubing, squeezable fidget toys
6. Being pulled by arms &/or legs
7. Sports, gymnastics, wrestling
Meanwhile, at the same time, we were also testing Ethan's Vestibular System. The vestibular system "tells us where we are in space and how the body is moving. It allow us to maintain our balance and elicit protective reactions." This system seems to be very typical...not overly or under responsive. This is a great thing. People who's system is overly responsive usually self-calm themselves by rocking back & forth. People with under responsive systems usually arouse their levels by spinning. These images are what people usually equate with autism. But this is only one part...and not all children with autism demonstrate these characteristics...and Ethan is one who does not. However, we still tested his system by participating in 48 activities. Yep...we did them all!
Here is what we discovered that Ethan responded well to.....
1. Jumping - trampoline, hip-pity hop ball, bed/cushions
2. Crashing & rough-housing
3. Climbing, pulling & pushing heavy things
4. Running
5. Upside Down activities - somersaults, bending over, laying off the couch
The reason these were tested together is because their activities are very similar. And to bring about the most benefit to Ethan, you need to do a Vestibular activities followed by a Proprioceptive activity. When we realized what Ethan enjoyed doing & responded well to, we began doing this about every 4 hours....we called it a "moving activity following by a heavy activity". It reminded me very much of exercising....do your cardio & then your weights.
When we did this, Ethan was able to focus on tasks longer, sit at the dinner table longer, and was much more manageable....for lack of a better word. However, since Ethan has been in OT for awhile now & his vestibular system is average, we don't have to do a moving activity near as much as we used to in the beginning. However, he still needs the weighted input in order to do everyday activities. When he sits at the dinner table, he has a step-stool under his feet, a chair with arms & a weighted stuffed animal (a caterpillar that I stuffed with panty-hose full of rice). Because of these aids providing input to his proprioceptive system, he can now feed himself with utensils, sit at the table longer (although he is still a toddler....he doesn't sit THAT long!), and is starting to talk to us about his day during mealtime.
This just amazes me that a few little changes have added up to such a big difference for Ethan & us. Occupational Therapy is AMAZING! Stay tuned for the tactile system......finger painting anyone???
The proprioceptive system "tells us about our own movement or body position. The receptors are in the muscles, joints, ligaments, tendon, and connective tissue." For Ethan, this is a weak system. He isn't aware of his own body movement & positions....making him appear to be clumsy. He trips over his own feet, walks into walls, falls out of chairs, and bumps into other children which puts him in the "under-responsive" category. Because of this, Ethan needs activities that will tap into this specific system, or sensory input, in order to help him overcome his "clumsiness". So, for 2 weeks, we tried different activities & recorded Ethan's responses. The therapist gave us a list of 71 activities that may or may not work with Ethan...and I tried them all.
Here is what our research discovered - Ethan & his proprioceptive system responded well to...
1. Jumping & bouncing
2. Pushing & pulling heavy objects
3. Weighted items (lap pads, heavy blankets, medicine balls)
4. Crashing into or being squished by couch cushions
5. Playdoh, stretchy tubing, squeezable fidget toys
6. Being pulled by arms &/or legs
7. Sports, gymnastics, wrestling
Meanwhile, at the same time, we were also testing Ethan's Vestibular System. The vestibular system "tells us where we are in space and how the body is moving. It allow us to maintain our balance and elicit protective reactions." This system seems to be very typical...not overly or under responsive. This is a great thing. People who's system is overly responsive usually self-calm themselves by rocking back & forth. People with under responsive systems usually arouse their levels by spinning. These images are what people usually equate with autism. But this is only one part...and not all children with autism demonstrate these characteristics...and Ethan is one who does not. However, we still tested his system by participating in 48 activities. Yep...we did them all!
Here is what we discovered that Ethan responded well to.....
1. Jumping - trampoline, hip-pity hop ball, bed/cushions
2. Crashing & rough-housing
3. Climbing, pulling & pushing heavy things
4. Running
5. Upside Down activities - somersaults, bending over, laying off the couch
The reason these were tested together is because their activities are very similar. And to bring about the most benefit to Ethan, you need to do a Vestibular activities followed by a Proprioceptive activity. When we realized what Ethan enjoyed doing & responded well to, we began doing this about every 4 hours....we called it a "moving activity following by a heavy activity". It reminded me very much of exercising....do your cardio & then your weights.
When we did this, Ethan was able to focus on tasks longer, sit at the dinner table longer, and was much more manageable....for lack of a better word. However, since Ethan has been in OT for awhile now & his vestibular system is average, we don't have to do a moving activity near as much as we used to in the beginning. However, he still needs the weighted input in order to do everyday activities. When he sits at the dinner table, he has a step-stool under his feet, a chair with arms & a weighted stuffed animal (a caterpillar that I stuffed with panty-hose full of rice). Because of these aids providing input to his proprioceptive system, he can now feed himself with utensils, sit at the table longer (although he is still a toddler....he doesn't sit THAT long!), and is starting to talk to us about his day during mealtime.
This just amazes me that a few little changes have added up to such a big difference for Ethan & us. Occupational Therapy is AMAZING! Stay tuned for the tactile system......finger painting anyone???
Sunday, July 24, 2011
Celebration Sunday
I would like to take some time today & celebrate the little things. Small things that may seem insignificant, but are big victories in our household. Ethan had an amazing week...oh my word....here is what he conquered this week!
1. "Mom, look! Water!" - This is huge. Such a small sentence for a three year old, but this is not typical talk of our Ethan. Normally, Ethan would say something like, "Water...wha, wha, water (sounding it out)....w-a-t-e-r (spelling it out)...water....great job, you did it!" That is typical. For Ethan to use my name is very rare. He knows I'm mom, but for him to say my name to gain my attention...I can count on one hand how many times he has done that in his entire 3 years. So that was BIG! Then, the "look" word. It is so rare that he INVITES me into his world. I am constantly PUSHING my way into his world. He will be playing an Ethan-type game such as lining up flashcards as he is saying their sounds. When I join him in play...even if I just ask him a question about his game...he looks at me & says, "Ethan's turn?"....which means "butt out mom!" So, he gained my attention by using my name as well as invited me into his world. And even though I was currently running water in order to rinse the dishes I had just washed....those dishes were put to the side & we played in that water!!!!!! TOGETHER!!!!!!! What a party!
2. New Words - For awhile now, we have realized that Ethan has been spelling & reading words. But this week, we came to the realization that he is probably reading more words than he can spell....he simply amazes me. However, we are still keeping track of words we realize he can spell....here are the new ones...DUCK, WEB, FUN, GAS, INK, FOX, ELK, JUG, PLAY, OVER, POT. Corey was playing a game with Ethan...Ethan would say, "How 'bout VIOLIN?", and Corey would spell it with our magnetic letters. Then Ethan would say, "V-I-O-L-I-N spells VIOLIN!" Ethan loves this game. Then, Ethan says to Corey, "How 'bout ASTRONAUT?" Corey looks at me with this confused & astonished look on his face, and says he doesn't think HE knows how to spell astronaut! HAHA! So, Corey turns back to Ethan & says, "How 'bout DOG?" It was great.
3. No Pacifier!!! - He has fallen asleep without his pacifier for 2 nights in a row!!! This is HUGE! We didn't even gear up for it or anything....just tried 'cold turkey' one night when he was extremely tired. Ethan has only been allowed is pacifier when he goes down for nap or at bedtime. A big tool that Ethan uses to calm down is chewing on things or sucking on things.....his sports bottle, a sucker, chewy toys, and his pacifier. So, we thought this was going to be an epic battle, and we weren't really planning on dealing with this issue yet. We have been focusing on potty-training. Only one battle at a time people!!!! But he did it!!!! YEAH! He does still ask for them, and when we tell him that big boys don't use a pacifier, he says, "I'm so sad." (Which to be honest, makes me want to give it right back to him.) And he has woken up in the middle of the night for hours at a time...trying to self-soothe himself back to sleep. But he's doing so great! And, bonus, we side-stepped one epic battle! Now for the other battle.....
4. Self-prompted pooping! - I don't know how to talk about body functions in any other way than kid-talk...so prepare yourself! Twice on Saturday & twice today (Sunday), Ethan has come to us, and said, "I have to poop on the potty!".....and he did every time!!!! Normally, with his diaper, he will poop once a day. However, because my child has the attention span of a goldfish, he poops a tiny bit & is ready to go back to playing. Then...a little while later...."I have to poop on the potty!"...and he finishes. Thus equaling the twice in one day. But, hey, this is a huge victory after a month of trying to potty train this child! And, if I don't have to change THOSE kind of diapers, I'll be in heaven!
5. Kissing on the cheek - Usually when we ask Ethan for a hug or a kiss, he will walk over to you & lean in sideways....you have to do the hugging or the kissing. But today, Corey tells Ethan to "give mommy a kiss on the cheek." He comes over, grabs my face with his little hands, pushes his mouth into the side of my face & then makes the kissing sound while he pulls his face away! It was the cutest thing ever! Tonight, we went out to my sister's school to help her set up her classroom (she is a teacher), and he kept giving my mom kisses on the cheek....all on his own! Adorable!
Well....it has been a full week. Ethan is growing right before our eyes. To the normal eye, these things wouldn't be a big deal. Most people probably wouldn't even notice this kind of stuff. But we do. And we celebrate it...big time. We have lots of impromptu party parades at our house. Every single new word, phrase, action, or poop is a big victory. Some days it's hard to see the light at the end of the tunnel. Some days I don't even think that my child knows I'm in the room. But some days.....some moments in time.....I get kisses on the cheek. And those precious moments are what sustain me....that & coffee.
1. "Mom, look! Water!" - This is huge. Such a small sentence for a three year old, but this is not typical talk of our Ethan. Normally, Ethan would say something like, "Water...wha, wha, water (sounding it out)....w-a-t-e-r (spelling it out)...water....great job, you did it!" That is typical. For Ethan to use my name is very rare. He knows I'm mom, but for him to say my name to gain my attention...I can count on one hand how many times he has done that in his entire 3 years. So that was BIG! Then, the "look" word. It is so rare that he INVITES me into his world. I am constantly PUSHING my way into his world. He will be playing an Ethan-type game such as lining up flashcards as he is saying their sounds. When I join him in play...even if I just ask him a question about his game...he looks at me & says, "Ethan's turn?"....which means "butt out mom!" So, he gained my attention by using my name as well as invited me into his world. And even though I was currently running water in order to rinse the dishes I had just washed....those dishes were put to the side & we played in that water!!!!!! TOGETHER!!!!!!! What a party!
2. New Words - For awhile now, we have realized that Ethan has been spelling & reading words. But this week, we came to the realization that he is probably reading more words than he can spell....he simply amazes me. However, we are still keeping track of words we realize he can spell....here are the new ones...DUCK, WEB, FUN, GAS, INK, FOX, ELK, JUG, PLAY, OVER, POT. Corey was playing a game with Ethan...Ethan would say, "How 'bout VIOLIN?", and Corey would spell it with our magnetic letters. Then Ethan would say, "V-I-O-L-I-N spells VIOLIN!" Ethan loves this game. Then, Ethan says to Corey, "How 'bout ASTRONAUT?" Corey looks at me with this confused & astonished look on his face, and says he doesn't think HE knows how to spell astronaut! HAHA! So, Corey turns back to Ethan & says, "How 'bout DOG?" It was great.
4. Self-prompted pooping! - I don't know how to talk about body functions in any other way than kid-talk...so prepare yourself! Twice on Saturday & twice today (Sunday), Ethan has come to us, and said, "I have to poop on the potty!".....and he did every time!!!! Normally, with his diaper, he will poop once a day. However, because my child has the attention span of a goldfish, he poops a tiny bit & is ready to go back to playing. Then...a little while later...."I have to poop on the potty!"...and he finishes. Thus equaling the twice in one day. But, hey, this is a huge victory after a month of trying to potty train this child! And, if I don't have to change THOSE kind of diapers, I'll be in heaven!
5. Kissing on the cheek - Usually when we ask Ethan for a hug or a kiss, he will walk over to you & lean in sideways....you have to do the hugging or the kissing. But today, Corey tells Ethan to "give mommy a kiss on the cheek." He comes over, grabs my face with his little hands, pushes his mouth into the side of my face & then makes the kissing sound while he pulls his face away! It was the cutest thing ever! Tonight, we went out to my sister's school to help her set up her classroom (she is a teacher), and he kept giving my mom kisses on the cheek....all on his own! Adorable!
Well....it has been a full week. Ethan is growing right before our eyes. To the normal eye, these things wouldn't be a big deal. Most people probably wouldn't even notice this kind of stuff. But we do. And we celebrate it...big time. We have lots of impromptu party parades at our house. Every single new word, phrase, action, or poop is a big victory. Some days it's hard to see the light at the end of the tunnel. Some days I don't even think that my child knows I'm in the room. But some days.....some moments in time.....I get kisses on the cheek. And those precious moments are what sustain me....that & coffee.
Friday, July 22, 2011
The Cure for Sensory Processing Disorder
Good news & bad news. The bad news is that there isn't a "cure". The good news is that, with lots of hard work, a person with SPD can overcome their sensitivity obstacles. YEAH!
How? Through the magical world of Occupational Therapy. Not magical in the sense of waving a magic wand & everything is fixed. Oh no. But magical because this stuff is AMAZING! Now, up until last Christmas, I thought occupational therapy was for children that needed help with handwriting or holding a pair of scissors. My, oh, my...how wrong I was!
According to www.aota.org, "In its simplest terms, occupational therapists and occupational therapy assistants help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations). Common occupational therapy interventions include helping children with disabilities to participate fully in school and social situations, helping people recovering from injury to regain skills, and providing supports for older adults experiencing physical and cognitive changes."
Now, when Ethan started OT, we participated in weeks of investigating Ethan's nervous system in order to determine his specific sensitivity needs & create is "sensory diet". The weeks of investigating consisted of one hour of therapy every other week where the therapist would work with Ethan as well as train me on what to do for the next 2 weeks. At the beginning, we would focus on a different system each time, and see if Ethan would respond positively or negatively or neither. For example, one 2-week session of our "research", we focused on Ethan's oral receptors or his sense of taste/touch. I would do a variety of therapist-directed activities with Ethan and record his reactions. Things like blowing bubbles, using a straw, chew toys, chewy foods (licorice, gummy bears, jerky), sucking food (popsicles, suckers), vibration toys (electric toothbrush, spinning suckers), licking (envelopes, sticker books), and an entire list of food to try with different properties of taste. We would do this for each of his senses.....and eventually we came up with Ethan's Sensory Diet. And because I have the personality I do....I did every single thing on the list....with every single assignment.
A sensory diet is "a carefully designed, personalized activity plan that provides the sensory input a person needs to stay focused and organized throughout the day. In the same way that you jiggle your knee or chew gum to stay awake or soak in a hot tub to unwind, children need to engage in stabilizing, focusing activities, too. Infants, young children, teens, and adults with mild to severe sensory issues can all benefit from a personalized sensory diet." according to www.sensorysmartparent.com. (This is a website that I really like if you are interested more in this topic.) The different senses that we looked at were...
Now, normally, I would have read him several books during the week about baseball games & what to expect. I would have also warned him before the game started that it was going to be loud. "And what do we do when it's loud? We cover our ears." However, as all parents know, sometimes what you plan for doesn't happen! I wasn't able to read to Ethan as consistently as I had wanted to due to family being in town. And when that happens, your normal routine goes out the window. And when we got to the game, it had already started...so we walked into cheering. It was the perfect storm.
OK.....Plan B...improvise. I moved my lawn chair away from the baseball game & into a shaded area....which addressed the auditory system by softening the cheering sounds. I also let him wear my sunglasses....which addressed the visual by dimming the light of the very hot sun. Even though it was SUPER hot, I caved & let him sit on my lap...which addressed the tactile system by applying deep pressure to his body. And, my wonderful friend Ashli, bought Ethan one of those baby bottle suckers from the concessions stand....which addressed the oral receptors by sucking on a sweet sucker. By the end of the game, he was softly clapping and saying, "Good job Orange Boy! Good job Red Boy" (the jersey colors).
This past weekend, while my husband and I were at the Easter Seals Clinic, my mom took Ethan to the Little League game with her. She said he had no problems at all. He did ask for his sucker though....the exact same one he had the last time he was there (so smart). Which further proves that if Ethan knows what to expect, knows what's coming, he will do very well. It's the unknown that makes it scary & overwhelming. Gee....I wonder where he gets that? But having & using his sensory diet has been amazing for helping Ethan...and keeping my sanity!
How? Through the magical world of Occupational Therapy. Not magical in the sense of waving a magic wand & everything is fixed. Oh no. But magical because this stuff is AMAZING! Now, up until last Christmas, I thought occupational therapy was for children that needed help with handwriting or holding a pair of scissors. My, oh, my...how wrong I was!
According to www.aota.org, "In its simplest terms, occupational therapists and occupational therapy assistants help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations). Common occupational therapy interventions include helping children with disabilities to participate fully in school and social situations, helping people recovering from injury to regain skills, and providing supports for older adults experiencing physical and cognitive changes."
Now, when Ethan started OT, we participated in weeks of investigating Ethan's nervous system in order to determine his specific sensitivity needs & create is "sensory diet". The weeks of investigating consisted of one hour of therapy every other week where the therapist would work with Ethan as well as train me on what to do for the next 2 weeks. At the beginning, we would focus on a different system each time, and see if Ethan would respond positively or negatively or neither. For example, one 2-week session of our "research", we focused on Ethan's oral receptors or his sense of taste/touch. I would do a variety of therapist-directed activities with Ethan and record his reactions. Things like blowing bubbles, using a straw, chew toys, chewy foods (licorice, gummy bears, jerky), sucking food (popsicles, suckers), vibration toys (electric toothbrush, spinning suckers), licking (envelopes, sticker books), and an entire list of food to try with different properties of taste. We would do this for each of his senses.....and eventually we came up with Ethan's Sensory Diet. And because I have the personality I do....I did every single thing on the list....with every single assignment.
A sensory diet is "a carefully designed, personalized activity plan that provides the sensory input a person needs to stay focused and organized throughout the day. In the same way that you jiggle your knee or chew gum to stay awake or soak in a hot tub to unwind, children need to engage in stabilizing, focusing activities, too. Infants, young children, teens, and adults with mild to severe sensory issues can all benefit from a personalized sensory diet." according to www.sensorysmartparent.com. (This is a website that I really like if you are interested more in this topic.) The different senses that we looked at were...
- The Proprioceptive System
- The Vestibular System
- The Tactile System
- The Oral Receptors
- The Visual
- The Auditory
Now, normally, I would have read him several books during the week about baseball games & what to expect. I would have also warned him before the game started that it was going to be loud. "And what do we do when it's loud? We cover our ears." However, as all parents know, sometimes what you plan for doesn't happen! I wasn't able to read to Ethan as consistently as I had wanted to due to family being in town. And when that happens, your normal routine goes out the window. And when we got to the game, it had already started...so we walked into cheering. It was the perfect storm.
OK.....Plan B...improvise. I moved my lawn chair away from the baseball game & into a shaded area....which addressed the auditory system by softening the cheering sounds. I also let him wear my sunglasses....which addressed the visual by dimming the light of the very hot sun. Even though it was SUPER hot, I caved & let him sit on my lap...which addressed the tactile system by applying deep pressure to his body. And, my wonderful friend Ashli, bought Ethan one of those baby bottle suckers from the concessions stand....which addressed the oral receptors by sucking on a sweet sucker. By the end of the game, he was softly clapping and saying, "Good job Orange Boy! Good job Red Boy" (the jersey colors).
This past weekend, while my husband and I were at the Easter Seals Clinic, my mom took Ethan to the Little League game with her. She said he had no problems at all. He did ask for his sucker though....the exact same one he had the last time he was there (so smart). Which further proves that if Ethan knows what to expect, knows what's coming, he will do very well. It's the unknown that makes it scary & overwhelming. Gee....I wonder where he gets that? But having & using his sensory diet has been amazing for helping Ethan...and keeping my sanity!
Wednesday, July 20, 2011
Sensory Processing Disorder
Being diagnosed with Autism is such a broad category. There is no one symptom or behavior that identifies children with autism.....therefore there is no one treatment. Our Easter Seals pediatrician says, "If you've met one child with autism, you've met just that....one child with autism." So, during Ethan's diagnosis clinic, he was given the overall title of "classic autism" with several sub-categories that are specific to Ethan.
Official diagnosis is "Autism with Receptive/Expressive Language Disorder, Sensory Processing Disorder, Fine Motor Delay and Feeding Concerns."
Today, I want to focus on Sensory Processing Disorder. I learned so much from our clinic about this particular issue, and I can't wait to share it. First of all....what is it? Well, I found a video on youtube.com that describes it perfectly! Basically, a person with SPD has difficulty processing their senses. For Ethan, his major struggle is with sound. Not to say the other senses aren't an issue, but the main one is sound. Fireworks, loud music or voices, hair dryer, people cheering and the vacuum are just a few things that send Ethan into a super-terrified state. When these things occur without warning, he screams/cries & tries to leave the room. Our occupational therapist told us that when Ethan screams/cries, it actually blocks out the sound of the object & allows him to only hear his own voice screaming/crying. Brilliant.
These are things we already knew before the clinic on Saturday. However, we learned 2 very important things during our clinic. The first thing we learned is, for Ethan, due to his SPD, he is VERY aware of his surroundings. This seemed odd to me because Ethan doesn't interact with people in his environment, so I didn't think he was even aware of things/people around him. But interacting with and being aware of are different. OK...that makes sense. A coping mechanism for people with SPD is to scan their environment for anything that will be difficult to process...for Ethan, anything that would be loud. This was totally an "ah-ha" moment for Corey and I. This explains why Ethan knows so many "logos".
We will be driving in the car, and you can hear Ethan saying, " What's that? Applebees! What's that? Verizon! What's that? South Side Bank!" I just figured it was part of his amazing memory, but this sheds even more light on this "game". A few weekends ago, we were at my cousin's wedding in St. Louis. We were on the 11th floor of a building, and it included an outdoor patio area. To escape some of the sound of the reception, we decided to venture to the outside balcony & check out the view of St. Louis....even Corey agreed! (He's afraid of heights.) So, the three of us are looking out over a beautiful city night, checking out the lights & sounds. I loved it! Then, Ethan says, "AT&T!" After double checking to see if we heard him correctly, we started looking for something that had the AT&T emblem on it....a phone, a banner, a poster, etc. Then Corey found it. WAY across the city on the top of a very tall building in blue neon lights....AT&T. It was so far away that it was hard to read....for us. What an amazing child! He was scanning his environment for noise-makers, and he found something he recognized...AT&T. Mind-blowing!
The second thing we learned was that when noises bother him, they actually hurt him. An older child was able to put it like this, "At church on Sundays, the sounds all gather in my ears and stay there amplifying and echoing. It is very painful....". This news broke my heart. Corey & I deal with Ethan's SPD very differently. Corey likes to keep him away from loud noises, and I tend to push him into settings with noises. Granted, I do give him warnings, let him use his ear plugs & his chew toys, but I have had the theory of "the world isn't going to cater to you, so suck it up & get used to it!".......man, I'm a great mom. HA!
However, I didn't realize it was PAIN. I just thought it was scary & caused great anxiety. So, knowing is actually hurts Ethan, I'm leaning towards my husband's way of thinking. Not totally, but some. HA! Ethan is only three, and he doesn't have to endure all of the loud noises now. Maybe fireworks are out of the picture for now, but school is not. I guess like everything else, we will need to pick our battles....I could give up vacuuming....ya know....for Ethan. ;0)
Official diagnosis is "Autism with Receptive/Expressive Language Disorder, Sensory Processing Disorder, Fine Motor Delay and Feeding Concerns."
Today, I want to focus on Sensory Processing Disorder. I learned so much from our clinic about this particular issue, and I can't wait to share it. First of all....what is it? Well, I found a video on youtube.com that describes it perfectly! Basically, a person with SPD has difficulty processing their senses. For Ethan, his major struggle is with sound. Not to say the other senses aren't an issue, but the main one is sound. Fireworks, loud music or voices, hair dryer, people cheering and the vacuum are just a few things that send Ethan into a super-terrified state. When these things occur without warning, he screams/cries & tries to leave the room. Our occupational therapist told us that when Ethan screams/cries, it actually blocks out the sound of the object & allows him to only hear his own voice screaming/crying. Brilliant.
These are things we already knew before the clinic on Saturday. However, we learned 2 very important things during our clinic. The first thing we learned is, for Ethan, due to his SPD, he is VERY aware of his surroundings. This seemed odd to me because Ethan doesn't interact with people in his environment, so I didn't think he was even aware of things/people around him. But interacting with and being aware of are different. OK...that makes sense. A coping mechanism for people with SPD is to scan their environment for anything that will be difficult to process...for Ethan, anything that would be loud. This was totally an "ah-ha" moment for Corey and I. This explains why Ethan knows so many "logos".
We will be driving in the car, and you can hear Ethan saying, " What's that? Applebees! What's that? Verizon! What's that? South Side Bank!" I just figured it was part of his amazing memory, but this sheds even more light on this "game". A few weekends ago, we were at my cousin's wedding in St. Louis. We were on the 11th floor of a building, and it included an outdoor patio area. To escape some of the sound of the reception, we decided to venture to the outside balcony & check out the view of St. Louis....even Corey agreed! (He's afraid of heights.) So, the three of us are looking out over a beautiful city night, checking out the lights & sounds. I loved it! Then, Ethan says, "AT&T!" After double checking to see if we heard him correctly, we started looking for something that had the AT&T emblem on it....a phone, a banner, a poster, etc. Then Corey found it. WAY across the city on the top of a very tall building in blue neon lights....AT&T. It was so far away that it was hard to read....for us. What an amazing child! He was scanning his environment for noise-makers, and he found something he recognized...AT&T. Mind-blowing!
The second thing we learned was that when noises bother him, they actually hurt him. An older child was able to put it like this, "At church on Sundays, the sounds all gather in my ears and stay there amplifying and echoing. It is very painful....". This news broke my heart. Corey & I deal with Ethan's SPD very differently. Corey likes to keep him away from loud noises, and I tend to push him into settings with noises. Granted, I do give him warnings, let him use his ear plugs & his chew toys, but I have had the theory of "the world isn't going to cater to you, so suck it up & get used to it!".......man, I'm a great mom. HA!
However, I didn't realize it was PAIN. I just thought it was scary & caused great anxiety. So, knowing is actually hurts Ethan, I'm leaning towards my husband's way of thinking. Not totally, but some. HA! Ethan is only three, and he doesn't have to endure all of the loud noises now. Maybe fireworks are out of the picture for now, but school is not. I guess like everything else, we will need to pick our battles....I could give up vacuuming....ya know....for Ethan. ;0)
Sunday, July 17, 2011
What in the WORLD is that sound?
My head is still spinning from all of the information we learned at yesterday's Easter Seals' Autism Spectrum New Diagnosis Family Orientation Program. But I wanted to share one thing that happened during the seminar....I'm still laughing about it.
The presenter had our class broken into four different topics.....
1. What is an autism spectrum disorder?
2. What causes autism?
3. What happens now?
4. What can I do to help?
During the second session "What causes autism", there was a lot of discussion. If you don't already know, they don't know what causes autism to occur in a person.....but there are a lot of theories and studies happening. One thing they told us, though, is that it is strongly genetic. According to NICHD, May 2005, "No one gene is responsible. Researchers suspect that there are a number of different genes that , when combined together, increase the risk of autism."
This is something that Corey & I already suspected. We always joke that Ethan received all of Corey's AND my idiosyncrasies. For example, if there is a clocking ticking loudly in a room, Corey can't block it out...it's all he can hear. Ethan has that. I am a schedule-follower, and I don't handle it well when my schedule changes at the last minute. Ethan has that too. I could go on & on with examples. But for this story, you only need to know that it is "strongly genetic".
Continuing on with the story, the Easter Seals seminar that Corey & I were attending was almost over. As a group, we had all decided to work through lunch & leave the class early. But, it had been a long morning...and a lot of sitting. We were starting to get restless. But we are in the home stretch! We are in the "What Can I Do to Help" section, and we are brainstorming ways to address a child's environment...such as using a clock that doesn't tick or having your child move away from the student who is repeatedly tapping their pencil on their desk.
OK...picture this. There are about 5 short "rows" of tables with chairs....4 chairs per row. There were about 16 people in the class. Corey & I were sitting in the next to last row. The man diagonally in front of us starts quickly bouncing his leg. Have you ever sat with people when they have done this? If you are sitting next to them in church, you can feel the entire pew vibrating? Or if you are at lunch with them, the table starts to bounce as well? Can you picture it?
OK....well the man starts bouncing his leg, and because of how he is sitting his chair is squeaking in rhythm to his bouncing leg....short, quick, chirpy sounds. Not loud....similar to a clock ticking or a pencil tapping.
Within SECONDS of this man bouncing his leg & squeaking his chair, 4 people in the front of the classroom quickly turned to see what the sound was just as my husband leans to me & says, "What in the world is that sound?!"
It was so hard not to laugh out loud. Seeing this play out....seeing people getting agitated within seconds....my husband being one of them.....it was soooooooo funny!!!!! And all I could think was.....autism is DEFINITELY genetic!!!!! That's a lesson from yesterday that I will NEVER forget....so funny!
The presenter had our class broken into four different topics.....
1. What is an autism spectrum disorder?
2. What causes autism?
3. What happens now?
4. What can I do to help?
During the second session "What causes autism", there was a lot of discussion. If you don't already know, they don't know what causes autism to occur in a person.....but there are a lot of theories and studies happening. One thing they told us, though, is that it is strongly genetic. According to NICHD, May 2005, "No one gene is responsible. Researchers suspect that there are a number of different genes that , when combined together, increase the risk of autism."
This is something that Corey & I already suspected. We always joke that Ethan received all of Corey's AND my idiosyncrasies. For example, if there is a clocking ticking loudly in a room, Corey can't block it out...it's all he can hear. Ethan has that. I am a schedule-follower, and I don't handle it well when my schedule changes at the last minute. Ethan has that too. I could go on & on with examples. But for this story, you only need to know that it is "strongly genetic".
Continuing on with the story, the Easter Seals seminar that Corey & I were attending was almost over. As a group, we had all decided to work through lunch & leave the class early. But, it had been a long morning...and a lot of sitting. We were starting to get restless. But we are in the home stretch! We are in the "What Can I Do to Help" section, and we are brainstorming ways to address a child's environment...such as using a clock that doesn't tick or having your child move away from the student who is repeatedly tapping their pencil on their desk.
OK...picture this. There are about 5 short "rows" of tables with chairs....4 chairs per row. There were about 16 people in the class. Corey & I were sitting in the next to last row. The man diagonally in front of us starts quickly bouncing his leg. Have you ever sat with people when they have done this? If you are sitting next to them in church, you can feel the entire pew vibrating? Or if you are at lunch with them, the table starts to bounce as well? Can you picture it?
OK....well the man starts bouncing his leg, and because of how he is sitting his chair is squeaking in rhythm to his bouncing leg....short, quick, chirpy sounds. Not loud....similar to a clock ticking or a pencil tapping.
Within SECONDS of this man bouncing his leg & squeaking his chair, 4 people in the front of the classroom quickly turned to see what the sound was just as my husband leans to me & says, "What in the world is that sound?!"
It was so hard not to laugh out loud. Seeing this play out....seeing people getting agitated within seconds....my husband being one of them.....it was soooooooo funny!!!!! And all I could think was.....autism is DEFINITELY genetic!!!!! That's a lesson from yesterday that I will NEVER forget....so funny!
Saturday, July 16, 2011
Welcome to Holland
Today, Corey & I went to the Autism Spectrum New Diagnosis Family Orientation Program at Easter Seals. It was very helpful & we learned about more supports available to Ethan and ourselves....I will be blogging more about that in the days to come.
However, for today, I wanted to share the poem our facilitator read at the close of the seminar. I laughed at the irony and cried at the truth of this poem. I hope you enjoy it.....
However, for today, I wanted to share the poem our facilitator read at the close of the seminar. I laughed at the irony and cried at the truth of this poem. I hope you enjoy it.....
WELCOME TO HOLLAND!
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans: the Coliseum, the Michelangelo David, the gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.
After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and but new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower placed than Italy, less flashy than Italy. But after you've been there awhile you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.
(Copyright 1987 by Emily Perl Kingsley. All rights reserved.)
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans: the Coliseum, the Michelangelo David, the gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.
After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and but new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower placed than Italy, less flashy than Italy. But after you've been there awhile you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.
(Copyright 1987 by Emily Perl Kingsley. All rights reserved.)
Friday, July 15, 2011
Tummy Trouble
I was in Heaven yesterday morning. I had a fresh pot of coffee brewing, Bruno Mars playing, and I was blogging away. Ethan was still asleep, and it was getting close to noon....it was beautiful. Then, for some crazy reason, I decided to go and check on him. I ignored Rule #1....never wake a sleeping baby. Although Ethan isn't a baby anymore, that rule still applies in this house. And I should have let Ethan sleep.
When I opened the door to his bedroom, he was sleeping. But he heard the creaking of the door open, he sat up, crawled out of bed & came to me for our routine morning hug. Now, usually, his hugs are pretty short because he is ready to play. However, on this day, he put his head on my shoulder & his arms around me....when usually his hug is more of a "lean into you & let you hug him". Thrilled with the rare treat of affection from my child, I picked him up & we swayed while he allowed the weight of his body to rest on me. Like I said...Heaven.
And then I felt it. His body started bucking. Oh man! He is about to get sick! And then he did...all over he & I. But, proudly, I didn't freak out! I actually remained calm and continued to encourage him to let his body do what it needed to do. Once he was done, we both changed clothes & headed for the bathroom....preparing for the next episode. As he started showing warning signs of more to come, I guided him to the toilet. Funny thing....he started to pull down his pants to go potty! I guess something from potty training is getting through to him! HA! When I realized what he thought we were in the bathroom for, I realized that I needed to teach my child how to be sick. So I did.....step by step instructions...just like I was teaching him to go potty...using a strategy that he responds well to....and he did!
I know it's strange to celebrate getting sick, but it is a victory. Ethan has a difficult time understanding non-concrete things...things like emotions or feelings. So "feeling sick" or "tummy hurts" are concepts he doesn't yet understand....let alone be able to communicate it to me. Poor kiddo just kept saying, "All done? Flush? All done? All done?...." But he did it! And when he was done, we cuddled in the recliner, sipped Gatorade (coffee for me) & watched Super Why together....Heaven.
Luckily, I had dealt with the same thing the day before, so I knew this wouldn't last long. And I knew he was feeling better when he looked up at me while snuggling and said, "Bacon? Yes! 10 pieces of bacon? (holding up all 10 of his little fingers) Yes!" Ha Ha! I love that kid!
When I opened the door to his bedroom, he was sleeping. But he heard the creaking of the door open, he sat up, crawled out of bed & came to me for our routine morning hug. Now, usually, his hugs are pretty short because he is ready to play. However, on this day, he put his head on my shoulder & his arms around me....when usually his hug is more of a "lean into you & let you hug him". Thrilled with the rare treat of affection from my child, I picked him up & we swayed while he allowed the weight of his body to rest on me. Like I said...Heaven.
And then I felt it. His body started bucking. Oh man! He is about to get sick! And then he did...all over he & I. But, proudly, I didn't freak out! I actually remained calm and continued to encourage him to let his body do what it needed to do. Once he was done, we both changed clothes & headed for the bathroom....preparing for the next episode. As he started showing warning signs of more to come, I guided him to the toilet. Funny thing....he started to pull down his pants to go potty! I guess something from potty training is getting through to him! HA! When I realized what he thought we were in the bathroom for, I realized that I needed to teach my child how to be sick. So I did.....step by step instructions...just like I was teaching him to go potty...using a strategy that he responds well to....and he did!
I know it's strange to celebrate getting sick, but it is a victory. Ethan has a difficult time understanding non-concrete things...things like emotions or feelings. So "feeling sick" or "tummy hurts" are concepts he doesn't yet understand....let alone be able to communicate it to me. Poor kiddo just kept saying, "All done? Flush? All done? All done?...." But he did it! And when he was done, we cuddled in the recliner, sipped Gatorade (coffee for me) & watched Super Why together....Heaven.
Luckily, I had dealt with the same thing the day before, so I knew this wouldn't last long. And I knew he was feeling better when he looked up at me while snuggling and said, "Bacon? Yes! 10 pieces of bacon? (holding up all 10 of his little fingers) Yes!" Ha Ha! I love that kid!
Thursday, July 14, 2011
How did you know? PART TWO
After a horrible pregnancy & an early delivery, I was soooooo glad to be going home WITH my baby. However, when we got home, Ethan & I both were still recovering. Two days after we were home, we took Ethan for this first pediatric appointment. After a couple of tests, we discovered that Ethan had jaundice. So, we had to get him all set up with a billy rubin blanket. During all of that, my swelling still hadn't gone away like that said it would with delivery. So, I had several OBGYN visits during the same time Ethan was going for his appointments & tests. Not only were we overwhelmed with a new baby, but throw in a bunch of doctor visits (forcing me to leave my baby after only one day!), tests & unknowns. After a week of going in for "check-ups", they FINALLY gave me water pills...realizing that my water retention wasn't going away on it's own. After another week, Ethan & I were back to "normal"....well....the new normal.
Everything from there on out was pretty typical parenthood stuff....until he was about one year old. When he was one, that's when people started making comments to me & Corey. "Why isn't he talking? Do you read to him? Do you talk to him? Why isn't he walking? Do you work on that with him?" OF COURSE I DO!!!! But I tried to ignored their comments. I just figured he would do it all in his time. A month later, he started walking. And he would babble...none of it made sense to me, but it was a sign of growth. When he was 18 months, Ethan still wasn't where he "should" be with his talking. So, my sister gave me the information for an Ear, Nose & Throat Doctor. She thought we should have his hearing tested. GOOD IDEA! This will give me some ammo when people make comments to me about Ethan not talking! I'll show them!!!!
So, we had Ethan's hearing tested, and he responded to sounds & his name. However, one of the tests showed that Ethan had fluid behind both ear drums. This meant that he was hearing but not clearly. This meant Ethan was about to have tubes put in his ears. Well, that meant I had no ammo for my negative community, but Ethan was going to be helped & could hear!!! YEAH! We were so excited to have an answer.
This is Ethan with Daddy on the day of his surgery. He still has those socks...he loves them! After his surgery, we were anticipating words to be springing forth in the next couple of days. Well...that didn't happen, but I did notice something. When he & I would play our "What's a Cow Say?" game, he would laugh at the sounds. For example, when I asked him what a cow would say before the tubes, he would say, "boo". Well, after the surgery, when I would say, "moo"....he would CRACK up laughing! So, this told me that there was already a difference in his hearing. He would be making progress in his speech in no time!!! And he did....sort of....
Everything from there on out was pretty typical parenthood stuff....until he was about one year old. When he was one, that's when people started making comments to me & Corey. "Why isn't he talking? Do you read to him? Do you talk to him? Why isn't he walking? Do you work on that with him?" OF COURSE I DO!!!! But I tried to ignored their comments. I just figured he would do it all in his time. A month later, he started walking. And he would babble...none of it made sense to me, but it was a sign of growth. When he was 18 months, Ethan still wasn't where he "should" be with his talking. So, my sister gave me the information for an Ear, Nose & Throat Doctor. She thought we should have his hearing tested. GOOD IDEA! This will give me some ammo when people make comments to me about Ethan not talking! I'll show them!!!!
So, we had Ethan's hearing tested, and he responded to sounds & his name. However, one of the tests showed that Ethan had fluid behind both ear drums. This meant that he was hearing but not clearly. This meant Ethan was about to have tubes put in his ears. Well, that meant I had no ammo for my negative community, but Ethan was going to be helped & could hear!!! YEAH! We were so excited to have an answer.
This is Ethan with Daddy on the day of his surgery. He still has those socks...he loves them! After his surgery, we were anticipating words to be springing forth in the next couple of days. Well...that didn't happen, but I did notice something. When he & I would play our "What's a Cow Say?" game, he would laugh at the sounds. For example, when I asked him what a cow would say before the tubes, he would say, "boo". Well, after the surgery, when I would say, "moo"....he would CRACK up laughing! So, this told me that there was already a difference in his hearing. He would be making progress in his speech in no time!!! And he did....sort of....
H-E-N....what's that spell? CHICKEN!
That was Ethan's playing with his Melissa & Doug spelling puzzles a couple of months ago. It was so cute & funny that I didn't correct him. For me HEN does spell chicken. These puzzles were a Christmas gift for Ethan. He has always been drawn to the "academic realm"...shapes, colors, numbers, letters....so these puzzles were a perfect seg-way for him to use his knowledge of letters & start spelling!
But I didn't realize how much he was absorbing. My amazing Ethan is spelling & reading! We first realized it when we were on our way to my cousin's wedding in St. Louis. We were in a drive thru, and Ethan kept saying "Thank You" over & over again. This is not unusual for him to do. He often repeats cartoons, commercials, computer games, etc. to himself over & over again. But then, I realized there was a sign outside the car window that said, "THANK YOU". When I asked Ethan what the sign said, he replied, "thank you". That was where I realized he was reading.
As of today, Ethan knows his shapes (including octagon & pentagon...I don't think I knew those until high school geometry!), colors, animals & sounds, uppercase & lowercase letters & their sounds, can count to & read numbers to 100, and he is spelling & reading...he is amazing!
He has several games that have the letters of the alphabet. I noticed that "elephant" was spelled on my refrigerator...E-L-P-H-A-N-T. The reason for the 2nd E being omitted was because the pack of letters only includes one magnet per letter. So, I thought he would get a kick out of lots of letters.....and I broke out my Scrabble game. My child spelled 25 words right before my eyes!!!!!!!! So, I've started keeping a list of words he knows how to spell...we are up to 33 words!!!! Here is what I know he can spell....
But I didn't realize how much he was absorbing. My amazing Ethan is spelling & reading! We first realized it when we were on our way to my cousin's wedding in St. Louis. We were in a drive thru, and Ethan kept saying "Thank You" over & over again. This is not unusual for him to do. He often repeats cartoons, commercials, computer games, etc. to himself over & over again. But then, I realized there was a sign outside the car window that said, "THANK YOU". When I asked Ethan what the sign said, he replied, "thank you". That was where I realized he was reading.
As of today, Ethan knows his shapes (including octagon & pentagon...I don't think I knew those until high school geometry!), colors, animals & sounds, uppercase & lowercase letters & their sounds, can count to & read numbers to 100, and he is spelling & reading...he is amazing!
He has several games that have the letters of the alphabet. I noticed that "elephant" was spelled on my refrigerator...E-L-P-H-A-N-T. The reason for the 2nd E being omitted was because the pack of letters only includes one magnet per letter. So, I thought he would get a kick out of lots of letters.....and I broke out my Scrabble game. My child spelled 25 words right before my eyes!!!!!!!! So, I've started keeping a list of words he knows how to spell...we are up to 33 words!!!! Here is what I know he can spell....
Ethan, Mom, Dad, elephant, zebra, horse, cow & cows, pig, goat, dog, cat, owl, fish, worm, wand, towel, yo-yo, box, bell, mix, food, flower, x-ray, exit, jar, drum, read, gift, hat, apple, sun, chair, nut
What a wonderful gift he has been given! I know some things about Ethan are frustrating (aka...potty training), but he is such a sweet little boy. I am so privileged to be his mom! Every day is definitely an adventure, and I can only do it with God & lots of coffee. And I'm looking forward to the day when Ethan destroys me in a game of Scrabble!
Wednesday, July 13, 2011
How did you know? PART ONE
"How did you know? How did you know something was "wrong" with Ethan?"
Believe it or not, I get asked this question all the time. And truth be told, I didn't know. At least not right away.
Let's go back to the beginning. My husband & I married in August 2002. Being only 22 years old, we wanted to wait 5 years until we started our family. We thought we were being smart....planning it all out. HaHa! Two years later, I was having some noticeable health issues, so I decided to see a new OBGYN. Dr. Michelle Pepperell, who now lives in Texas (sad), ran some test and discovered that I have Polycystic Ovary Syndrome. I was told that there was a strong possibility that I would have difficulty conceiving a child. And to be honest, at the moment, I was more concerned with my sudden weight gain & strange facial hair that having a child. I was only 24 at the time, and I was still trying to land a teaching position. Starting a family was the last thing on my mind.
Now, fast forward a couple more years. After doing long-term substitute teaching for a couple of years, I went back to work at Morton Buildings as an administrative assistant (I call it secretary). I loved it! And Corey's career was taking off as well. We were both doing well & in stable careers...the time seemed right. So, I went off my birth control pill in May 2007. Why was I on birth control if there was a low chance of conceiving? It was to help with my PCOS. Anyway, knowing that this was probably going to take years of trying, we weren't in any hurry...we were both very happy with our life, careers, family, etc. We would just leave it in God's hands. Then, in November, we got the shock of our life....we were pregnant. We couldn't believe it! We hadn't planned on it happening that quickly! We were so happy! God had blessed us with a miracle!
Right away, I started with the typical pregnancy experience....morning sickness. Only, mine wasn't morning...mine was all day sickness. After 12 weeks, I was hoping it would subside...like everyone said it would. It didn't. It got worse. I was losing weight, becoming extremely fatigued, and it was becoming impossible to work. So, my doctor put me on short term medical leave. She told me if I didn't start taking care of myself, my symptoms would get worse. And if I didn't start gaining weight, she was going to hospitalize me.YIKES! So, I took a leave from work & rested as much as I could...and I was still getting sick. During this time, my husband & I discussed our future. Baby names, nursery colors, college funds (hey, I'm a planner!), etc. We also decided that we wanted one of us to stay home with our kids. Since my income was half of my husband's, it was clear who should stay home. So, after my short term leave was over, I gave my 2 weeks notice. I was still sick, and I didn't know how I was going to make it through 2 weeks of work. And some days, I couldn't.
Shortly after that, my husband's grandfather passed away. We made a road trip to North Carolina. I packed lots of root beer & chicken noodle soup....the 2 things that I could faithfully keep down. Halfway through the trip, I noticed I was swelling. My shoes no longer fit, and it hurt my legs to walk. When we got back, my doctor put me on light bed rest. A month later, I was placed on complete bed rest. My blood pressure was rising, and I was already having contractions. I remember celebrating my 28th birthday with all of my family in my bedroom...that was hilarious.
The next day, Sunday, June 22nd, I woke up and realized that my water had broken....3 weeks early. Ten hours later, Ethan was born. I don't remember the first time I held him. We have pictures, but I don't remember it. They tell me that it was because of exhaustion and my extremely high blood pressure. Ethan was given formula right away due to his blood sugar being low, and he had to be in an incubator for days in order for him to increase/regulate his body temperature. They kept him in the nursery most of the time. By the time I was aware of things again, I went to see him. I remember wheeling into the nursery (I was in a wheelchair), and not knowing which baby was mine. That was overwhelmingly scary. Then, they led me over to his "bed". The nurse gave him to me, and we practiced "skin-to-skin". To me, that was the first time I remember seeing my child. He was perfect.
Ethan responded well to treatment, and he was able to go home with us. They said he was fine. He passed his hearing test, his car seat test, he was maintaining body temperature, and eating very well. Not too bad for 3 weeks early. But neither of us were out of the woods just yet.
Believe it or not, I get asked this question all the time. And truth be told, I didn't know. At least not right away.
Let's go back to the beginning. My husband & I married in August 2002. Being only 22 years old, we wanted to wait 5 years until we started our family. We thought we were being smart....planning it all out. HaHa! Two years later, I was having some noticeable health issues, so I decided to see a new OBGYN. Dr. Michelle Pepperell, who now lives in Texas (sad), ran some test and discovered that I have Polycystic Ovary Syndrome. I was told that there was a strong possibility that I would have difficulty conceiving a child. And to be honest, at the moment, I was more concerned with my sudden weight gain & strange facial hair that having a child. I was only 24 at the time, and I was still trying to land a teaching position. Starting a family was the last thing on my mind.
Now, fast forward a couple more years. After doing long-term substitute teaching for a couple of years, I went back to work at Morton Buildings as an administrative assistant (I call it secretary). I loved it! And Corey's career was taking off as well. We were both doing well & in stable careers...the time seemed right. So, I went off my birth control pill in May 2007. Why was I on birth control if there was a low chance of conceiving? It was to help with my PCOS. Anyway, knowing that this was probably going to take years of trying, we weren't in any hurry...we were both very happy with our life, careers, family, etc. We would just leave it in God's hands. Then, in November, we got the shock of our life....we were pregnant. We couldn't believe it! We hadn't planned on it happening that quickly! We were so happy! God had blessed us with a miracle!
Right away, I started with the typical pregnancy experience....morning sickness. Only, mine wasn't morning...mine was all day sickness. After 12 weeks, I was hoping it would subside...like everyone said it would. It didn't. It got worse. I was losing weight, becoming extremely fatigued, and it was becoming impossible to work. So, my doctor put me on short term medical leave. She told me if I didn't start taking care of myself, my symptoms would get worse. And if I didn't start gaining weight, she was going to hospitalize me.YIKES! So, I took a leave from work & rested as much as I could...and I was still getting sick. During this time, my husband & I discussed our future. Baby names, nursery colors, college funds (hey, I'm a planner!), etc. We also decided that we wanted one of us to stay home with our kids. Since my income was half of my husband's, it was clear who should stay home. So, after my short term leave was over, I gave my 2 weeks notice. I was still sick, and I didn't know how I was going to make it through 2 weeks of work. And some days, I couldn't.
Shortly after that, my husband's grandfather passed away. We made a road trip to North Carolina. I packed lots of root beer & chicken noodle soup....the 2 things that I could faithfully keep down. Halfway through the trip, I noticed I was swelling. My shoes no longer fit, and it hurt my legs to walk. When we got back, my doctor put me on light bed rest. A month later, I was placed on complete bed rest. My blood pressure was rising, and I was already having contractions. I remember celebrating my 28th birthday with all of my family in my bedroom...that was hilarious.
The next day, Sunday, June 22nd, I woke up and realized that my water had broken....3 weeks early. Ten hours later, Ethan was born. I don't remember the first time I held him. We have pictures, but I don't remember it. They tell me that it was because of exhaustion and my extremely high blood pressure. Ethan was given formula right away due to his blood sugar being low, and he had to be in an incubator for days in order for him to increase/regulate his body temperature. They kept him in the nursery most of the time. By the time I was aware of things again, I went to see him. I remember wheeling into the nursery (I was in a wheelchair), and not knowing which baby was mine. That was overwhelmingly scary. Then, they led me over to his "bed". The nurse gave him to me, and we practiced "skin-to-skin". To me, that was the first time I remember seeing my child. He was perfect.
Ethan responded well to treatment, and he was able to go home with us. They said he was fine. He passed his hearing test, his car seat test, he was maintaining body temperature, and eating very well. Not too bad for 3 weeks early. But neither of us were out of the woods just yet.
Potty Training Update
Well, after cleaning up another accident, I've decided to have Ethan go back to wearing pull-ups instead of "big boy underpants". With as many accidents as he is having, I am feeling trapped inside my own home due to preventing an accidents (or realistically...accidents) out in public. HOWEVER, I remember Ethan's Early Intervention Speech Therapist telling me about pull-up diapers that get cool in temperature when they are wet. I just ordered some of these diapers from Amazon. I'm hoping these help Ethan realize when he has gone potty...something he doesn't seem to be aware of at the moment. And if he does realize he is wet.....he really doesn't care! If I don't see that his clothes are wet, he never complains or whines about it. Just keeps on playing! (I don't know why, but that makes me smile.....I guess just classic Ethan!) Plus, if he does have an accident, it won't mean an entire change in clothing each time....leaving me feeling more free to leave our home! YEAH!
So, our Huggies Pull-Ups Cool Alert Training Pants will be here in 5-8 days. For a box of 52, it was on sale for $28.67, and it qualified for free shipping. However, I use Swagbucks as my search engine (much to my husband's annoyance...he's a Google maniac!). When you use Swagbucks, you earn Swag "bucks" which can purchase a variety of things. I use mine to purchase Amazon gift cards. So....my total bill for these diapers was $7.61. Normally, I would have more $21 in Swagbucks, but our Ethan just had a birthday....which pretty much drained our Amazon gift cards! I love that kid!!!!!
So, hopefully, these pull-ups will help Ethan. I am really wanting him to be pretty well potty trained by the time he starts preschool this August. They say as long as he is in a pull-up he is okay, but I think he will have more than enough to handle when school starts. It would be nice to have this taken care of before that transition happens.
So, our Huggies Pull-Ups Cool Alert Training Pants will be here in 5-8 days. For a box of 52, it was on sale for $28.67, and it qualified for free shipping. However, I use Swagbucks as my search engine (much to my husband's annoyance...he's a Google maniac!). When you use Swagbucks, you earn Swag "bucks" which can purchase a variety of things. I use mine to purchase Amazon gift cards. So....my total bill for these diapers was $7.61. Normally, I would have more $21 in Swagbucks, but our Ethan just had a birthday....which pretty much drained our Amazon gift cards! I love that kid!!!!!
So, hopefully, these pull-ups will help Ethan. I am really wanting him to be pretty well potty trained by the time he starts preschool this August. They say as long as he is in a pull-up he is okay, but I think he will have more than enough to handle when school starts. It would be nice to have this taken care of before that transition happens.
Tuesday, July 12, 2011
Potty Training
I think I've hit my breaking point today! After almost 3 weeks of potty training, we have seen very little improvement from the 1st day. Most of my girlfriends are telling me that this means Ethan is not ready. But I think if it was up to Ethan, he would always wear a diaper! My hope is to have Ethan trained by the time he starts school in a little over a month. So, I'm just going to keep doing what we are doing, and maybe someday he will get the hang of it.
What are we doing? Well for the first week, we did the Train Your Child in 3 Days. And, honestly, by day 3 & 4, he was very self-monitored and needed no help from Mommy or Daddy. But then, the weekend came (which meant wearing clothes& changes in environment), AND it was his birthday party at Grandma's house (lots of commotion). All our hard work went out the window. By the second week, he was back to having accidents twice an hour...PLUS getting upset every time we guided him to the bathroom.
I have a friend who is an
What are we doing? Well for the first week, we did the Train Your Child in 3 Days. And, honestly, by day 3 & 4, he was very self-monitored and needed no help from Mommy or Daddy. But then, the weekend came (which meant wearing clothes& changes in environment), AND it was his birthday party at Grandma's house (lots of commotion). All our hard work went out the window. By the second week, he was back to having accidents twice an hour...PLUS getting upset every time we guided him to the bathroom.
I have a friend who is an
About Ethan
Ethan is our only child, and he is our everything. When he was 2 years old (34 months), he was diagnosed with classic Autism. His official diagnosis is, "Autism with Receptive/Expressive Language Disorder, Sensory Processing Disorder, Fine Motor Delay and Feeding Concerns." The good news was that he is considered "high-functioning". We have been able to implement strategies that have helped Ethan live a pretty typical life among our large extended family, close church family, and carefully planned & thought out community events. However, now that Ethan is 3 years old, new challenges have come our way....potty training, birthday parties, and soon...starting school. It is my hope that this blog will help me connect to other families living with autism, learn more about how we can help Ethan, and provide free therapy for me. :0)
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