Wednesday, May 06, 2015

2015 -The Year of Much Progress

Heading into the OR for an endoscopy and myringoplasty, charming everyone in his wake.

This kid and his amazing attitude are a constant source of inspiration and perspective. I can’t believe how far he has come since my last blog post over one year ago. He just keeps getting cuter, smarter, funnier, and more awesome by the day. I am unabashedly proud of him.

He loves his hearing and speaking but has also been using more sign language since my last post. He not only answers questions, he answers them with follow-up comments. If I ask him what specials class he had that day, he’ll answer with “Music”, then follow it up by telling me what song they learned and then by showing me the dance that goes along with it. If I ask him whether he saw his SLP that day, he’ll say “No”, then follow it up with “I see her Monday and Friday.” It’s so amazing to be able to converse with him (after 9 years!) and get to know him better. We are always a little blown away by this and I hope we aren’t taking it for granted.

For the first time in his life, Ethan now has neighborhood playmates. They moved in next-door last summer and frequently come over to see if he can come out to play. I’ll never forget his face or excitement the first time the doorbell rang and he saw kids standing there waiting to play with him. It’s fun to see him doing normal kid stuff!

He’s doing really well in school, made the honor roll, and loves his new interpreter. He qualifies once again for services over the summer, which helps keep him in a bit of a school groove. He absolutely loves school and is more than happy to go during the summer. Another thing not to be taken for granted!

Dazzler is the heart of the family. We spoil her and overwhelm her with affection daily. She continues to lie on his bed until he falls asleep each night and he always loves to have her nearby. They’re great playmates and pals.

Waiting for the school bus with Dazzler. 

I think the most life-changing thing we’ve seen with Ethan’s development this year has been the expansion of his ability to follow logic and reason.

Before he had any outward reasoning abilities, we were experiencing many more meltdowns and explosive behaviors in general. As parents, we’ve felt near constant anxiety from trying to prevent and manage these explosions. I remember reading an article that discussed MRI findings of the brains of parents with autistic children and the findings mirrored those of veterans with PTSD. I can’t speak for Rich (though I suspect he would agree) that we felt a pervasive sense of failure and tension. Ethan still has a hot temper, but now that he is following logic and is able to communicate his thoughts and feelings, we’re seeing exponential growth and maturity that I wasn’t sure would ever come. We’re really starting to just enjoy him and have fun, in spite of the challenges that we still face.

Friday, March 28, 2014

Ethan has blown our minds this year.  He’s doing really well academically, far exceeding reasonable expectations within a calendar year. He no longer requires occupational therapy services at school as his penmanship has drastically improved. And to top it off, he is interested in interacting with peers and spends more time with them than ever before.

The most dramatic change has happened with his speech and language. A year ago, we were thrilled if he answered a yes or no question. That would have been the only way to engage him in anything that even resembles a conversation. Now, he gets off the bus and tells me about his day. He’ll say whom he sat with at lunch (the same adorable girl every day), whether they played outside or inside at recess, if they had art or went to the library, etc. He’s still figuring out things like grammar, sentence structure, and pragmatics, but he’s communicating! The speech pathologist at his school is a miracle worker. Thanks to her training in the prompt method and passion for her work, he is able to create the ‘B’, ‘F’, ‘G’, and ‘th’ sounds (with ‘V’ on the way) for the first time. It’s much easier to understand him than ever before. His use of sign language has also grown and changed and he’ll sign long phrases now or entire songs rather than the occasional word.

Ethan and Dazzler make a pretty sweet team. After he fell asleep last night, I called her name several times, even using the command ‘Come’, which she ignored. She has never ignored that command. I went into the room and she was sitting at the edge of his bed wagging her tail. I could tell that part of her wanted to go play and hang out with me, but she was determined to stay in his room and hang out  while he slept. She’s so good to him. The companionship she provides him is a bonus that I wouldn’t trade for the world.

Ethan is excited to play his second season of T-ball for the Miracle League.  Last year he didn't have a grasp of how the game is structured and how to play by the rules. I think he's come so far cognitively in the past 12 months that we might see him do a little more than just run aimlessly in the outfield! Either way, he enjoys it so much and it's always so uplifting to see the other families at the games. We're also hoping to get him on the Special Olympics soccer team. 

We’ve not been without our uphill moments this year, but when I look at everything that has happened with a wider lens – I have to say it’s quite a beautiful picture. 

Wednesday, March 20, 2013

Boy on the Rise

The stars have certainly been aligning and shining on Ethan these past several months. He has made enormous progress in areas like academics, behavior, self-help skills, hearing, and speech and language.

Parenting Ethan (or simply just watching the trajectory of his growth) has been the ultimate roller-coaster ride. We have always greeted hard news with optimism because Ethan always pulls through the obstacles put in his path. Hard times have consistently been followed with small victories in other areas. On the flip side, when things seem to be going smoothly, I’ve relished the days and been poised to accept the inevitable downhill aspect of the ride.  But this time it feels different! We just keep going up. Sometimes we’ll even out, but rather than go back down, we stay and wait for the next big thing that he’ll say or do. He’s happier and more confident than ever.

2013 started out with the best mapping session Ethan has had in years. His faulty Ci in 2009 traumatized him to the point that he was terrified of going to the audiologist for the following 2.5 years. Our Child Life department shadowed us to the appointments and developed a picture book with pictures of Ethan and his audiologist to help him develop comfort with the process. After 3 years of baby steps, we finally got full cooperation from him during a session. The results: he’s hearing things for the first time and distinguishing between sounds like s/sh and many others. His speech is already much more clear and he attempts to say new things all the time. This all coincided with a huge cognitive shift in terms of his ability to understand and use language – not just produce the sounds of it. He is showing signs of reasoning and logic that we’ve never seen and that has resulted in far fewer meltdowns.

School could not be better. In the past, he has qualified easily for extended school year services over the summer break. This year I’m not so sure. He has had so many breakthroughs academically. Last year he didn’t understand the basic concepts of addition and now he is doing word problems in both addition and subtraction. Place value was understood almost overnight. It’s incredible to witness since we worried that maybe math was just too hard for him. He reads at grade level now as well, though comprehension is a much different story and harder to assess. Behavior at school has been terrific and I've been told that the kids love him.

Ethan has also showed great improvement in self-help skills. He is finally toilet trained! No accidents since November! (Nighttime is a different story.) He sees a tutor 3 days a week and loves to go to her house. He works so hard and now is dressing himself, putting on shoes, zipping up his coat, and eating with much better table manners. He also gets to play with her daughter and has developed some social skills as a result of their interactions. His tutor taught him how to do puzzles and now refers to him as the “puzzle master”.

Dazzler and Ethan are getting closer every day. He has learned how to put her into a variety of commands and she listens and does what he says. He has been mimicking me and calling her by nick names in a high-pitched voice – it’s too cute. We were at the store over the weekend and I forgot to take their tethering equipment, so I walked with Daz to my side and Ethan walked next to her. It seems the tethering experience has been imprinted on him because he stayed close and walked at our pace even without the physical connection between them. Considering the fact that he used to just sprint away from us, this was quite a big moment. We continue to be amazed by this dog and what she has done for Ethan and our family.

I’ve always dreaded summer breaks since Ethan does 100% better in the routine of school, but this year I feel a bit more excited about the time we’ll spend together. He has been such a happy, well-adjusted kid that he’s actually a joy to be around. It feels good after 7 years to be able to say that and honestly mean it. It’s not that he is challenge free, far from it. Now he is enjoying a level of stability in his moods and a surge in his progress and self-esteem has followed. We should all be so lucky!

Wednesday, November 07, 2012

Life with Dazzler

Don't these two look like they belong together?

Ethan was a bit afraid of her during training and we wondered how long it would take to see a bond form between them. Once training was completed and she was in our home, they became fast friends. 

She is all business while she's working, but when Ethan is in his goofy state of mind and just being a boy, she's always game to play along.

She wants to be involved in whatever Ethan is doing. This table is great since it gives her the advantage of seeing what he's up to. 

Laying her head on his lap while he's on the computer.

Giving her boy kisses.

Things are going really well here with Dazzler. She seems to love her new home and is very attached to her new boy. We continue to work on her training and practice her skills and she continues to amaze. We have taken Ethan to the park and one of us will hide with him somewhere while the other gives Dazzler the command to track him. She loves doing this and is incredibly fast and accurate at finding him. The peace of mind that gives us is priceless. She has shown herself to be a social bridge for Ethan and has given him independence he has never known while out in the community. We took him to a Walmart to practice tethering and he was able to walk free of my grip and with Daz by his side. When we approached a young girl who was clearly enamored with his dog, he stopped and showed her how to pet Dazzler and signed and said "Your turn." That's incredible progress for him on many levels. 

Ethan has been making enormous strides in his development across the board since Dazzler's arrival. His language growth has been taking our breath away on a near daily basis. He is beginning to answer questions, say things spontaneously, and communicate in a very purposeful way. We are constantly surprised and amazed by him. 

He now has a playmate to fall asleep and greet the morning with. For years we've had to stay with Ethan until he falls asleep, but with Dazzler by his side he is willing to be a big boy and go to sleep on his own. That's also in part to that ever present and miraculous "dad magic" that happens when Rich is put in charge for a few days. 

I'm looking forward to the days to come instead of dreading them. I don't know if Dazzler can truly be responsible for everything wonderful happening right now, but she certainly has a big part in it. 

Wednesday, September 12, 2012

Ethan and Dazzler


This is the first time that Ethan and Dazzler walked tethered together. As you can tell, it was pretty smooth and Ethan was walking with quite a bit of confidence and swagger. I think he was proud to show off his dog. And truthfully, this was the first time he has ever been out in public and walking freely without one of us holding tightly to his hand. This is one of the most exciting aspects of Dazzler's presence in our lives!

I also wanted to link to a story that our local news station did on Ethan and Dazzler in addition to a story written by the 4 Paws for Ability media staff member:  Wonder Boy Gets Super Dog.

Sunday, August 26, 2012

Razzle Dazzle is in the House!

Graduation Day!

We just completed 11 days of training at 4 Paws for Ability in Xenia, Ohio to get Ethan's new service dog. That handsome guy on the left is Ethan's dad and the one in the center is the college student (Miami University) who fostered Dazzler when she was a pup. She was so surprised and thrilled to see him that day!

The look on my face is one of amazement as Ethan gives Daz a hug. The first few days of class, Ethan seemed to be afraid and overwhelmed by her. She is only 11 months old and though highly trained and obedient, she's not a robot. She has lots of energy and a very upbeat sweet attitude, not to mention a wiggly tail! Her wet nose and kisses were a bit much for Ethan as well. But by the end, Ethan was pretty enthralled and giving hugs.

We were filmed and interviewed for a local news story during training, so here is a link to the video. Rich and I were pleased with how it turned out, in spite of the fact that it was done at a time when we were both at our most exhausted point of the training!

The 4 Paws staff are so incredibly talented and professional. The families we met during the training were such wonderful people, too. It was an amazing experience and we couldn't be more grateful.

We'd like to thank the Erma A. Bantz Foundation in Cincinnati, Ohio for giving us the scholarship that provided Dazzler. Words really can't convey our gratitude. Our lives are forever changed and a sweet chocolate lab will forever be cherished.

Sunday, August 05, 2012

Waiting for Dazzler

Meet Dazzler! She's a chocolate lab born 9-1-2011 and she has been fostered by loving people at Miami University in Oxford, Ohio as well as trained by the people at 4 Paws and has also spent time in training via their prison program.

We go to meet her and start our 10 day training on Aug. 14. We'll spend the entire day, for 10 straight days, working with Daz and the lead trainer at 4 Paws, then we get to bring our girl home for good!

We've been getting really excited about this lately; having a name and a face to look at really has made the anticipation for this even more incredible. I haven't felt this way since I was a young child on Christmas Eve. Ethan is also happy. He has been saying "Ethan's new brown dog" and has even been practicing saying her name. Our backyard is getting fenced in this week and we've got a crate and dog bed as well as food bowls all ready to go.

We love and adore her already!

Tuesday, June 26, 2012

Summer with Bear

 Posing with his bears.

Posing with his favorite bear

Ethan has been in a pretty big development phase lately with speech and language, imaginative/creative play, and emotional/interpersonal growth. It's hard to say whether this is all happening as a result of having bilateral hearing again, or just his natural trajectory of development. It's likely due to a combination of both paired with the services he has been receiving at school and through his private speech therapy. We've also been dealing with new challenging behavioral issues that have us feeling a bit lost and depressed, but we're hoping that once school resumes in the fall he will be able to make progress in this area as well. 

Summers have always been difficult. He craves the routine and structure that school provides and he's such a social creature, he seems bored and restless here at home. Unfortunately, he really doesn't have any playmates at the moment, at least none that have transitioned out of the school setting. He is pretty popular with the kids at recess and is always getting notes from girls wanting to be his "BFF" and asking to play with him during recess, but we've yet to see those friendships blossom beyond the school. 

Ethan is talking and signing up a storm in addition to using his iPad (Touch Chat App) and paper & pen. He will use every means of communication at his disposal and often uses 2 or 3 together, in order to get his point across. He is starting to say more than just "I want..." and is making the occasional comment now. Last week when we were swimming, he looked at the sky then signed to me "sun hot hurt eyes", which totally blew me away. That's making conversation! That's also a lot of words to string together! 

He has been obsessed with his stuffed bear lately, which has been pretty cute. I've been told that kids with autism generally do not display imaginative/creative play skills, which is a critical component to learning about the world. I'm not so sure if that is true since the autism spectrum is so broad and no 2 kids on it seem alike, but it couldn't be further from the truth for Ethan. He has that bear doing everything. Bear goes everywhere, shares meals, gets tickled by Ethan, plays hide and seek, acts silly, pets the cat, drives our cars, etc. Ethan loves nothing more than to stage photos of his bear and sometimes, as in the picture above, he just likes to hang with bear and hold hands. It's pretty darn sweet. 

All in all, there's lots of good stuff going on here. Ethan has summer school 2 days a week from 9-11, which really isn't much, but it's enough to make him happy and gives me a chance to run errands and get some alone time. Still, I'm counting down the days that he is back in school. He's so much happier and more emotionally stable in that routine, and so am I. 

Monday, April 23, 2012

Spring Boy


This is Ethan’s favorite time of year. He has never said so, but I can see how much he delights in being outside, exploring the yard, the blooms, and the trees. He has been signing to me a lot about the squirrels and birds and has picked up a habit of mine: running full speed at the squirrels that would steal the bird’s food from the feeders. His new and (vastly) improved hearing has been fun to witness in all settings, but particularly outside. It’s fun listening to all the bird songs while helping him locate them in the trees. He tunes out the neighborhood noise (mostly mowers) and picks up on the more subtle sounds of nature with a natural ease; I don’t have to teach him or take him to sounds I want him to notice.

We had an IEP (individualized education plan) meeting last week with his entire team: classroom teacher, special education teacher, SLP, OT, adaptive gym teacher, deaf education teacher, and administrative representatives. His interpreter was the only person not present at the table. They’ve prepared a group of goals for him across the board academically and socially that really couldn’t be better. He has an amazing special education teacher (has had her for 2 years and will leave her for a new teacher next year) who has the perfect combination of intellect, skill, flexibility, and compassion. The only time I have cried in the past several weeks is when I think about how much she has done for him and how I wish she could follow him through the years ahead. She sets the bar high for him, but helps him reach it carefully without asking too much too soon. And apparently, she sets it equally high for herself because she just can’t be replaced. The new teacher will have enormous shoes to fill.

I recently visited a deaf-autism program at a deaf school in Vermont. They have one of the only programs of this kind in the country, so I was naturally very interested. It appears to be in its infancy (2 years old) and is very underdeveloped from what I could tell. The enrollment at the school is incredibly low (50 students) and only a few in the deaf-autism program, all of them older kids. If Ethan were a student, he’d be in a regular classroom and they would have autism services delivered via a consultant role in the classroom. I met the staff and observed the classroom and felt that they were incredibly friendly and engaged in their work. The teacher did not yet have a special education degree, but was a deaf educator instead. I couldn’t quite see Ethan in that class based on what appeared to be a less structured environment; he thrives on extreme structure. Right now he is skill building like a maniac and I think we’d be very hard pressed to find a setting that meets the academic standard as well as combined services that he is receiving.

What I loved was the focus on job share training for the older kids and their strong connections within the community. It seemed like a place where Ethan could age and be more of a part of the community. Community involvement is something we’re thinking about as we shape our plans to support Ethan’s growth. We are transplants in a sprawling area that lacks a center of gravity or a sense of community. We have high standards in this area as we come from a small town, which fosters that atmosphere more so than anywhere I’ve seen. For now, we’ll stay put since the school district is doing such an incredible job and we are near Ethan’s team of doctors and therapists at the hospital. Looking down the road, I know we’ll enter a different phase and need to make a shift. The school in Vermont (as well as the community) presents the strongest option yet.

I also want to note that in my opinion, Ohio is not a friendly place for people (or their families) with autism. Insurance companies aren’t mandated to cover services and additional support is only available if you’re low income. I hope things change for the families in our state who are trying to make their way in this world, but I know for sure that Ethan will not grow into adulthood in a place that isn’t willing to care for him. 

Monday, March 12, 2012

Happy Hearing Boy

Ethan is so happy! He has only been hearing with his new ear for a few weeks and we've seen really exciting changes on a daily basis. After just one mapping session he has tested down to a mild hearing loss in the booth. He is loving music and listens to it daily. He puts himself to sleep and wakes up singing his favorite songs. He has far fewer meltdowns and is generally much happier throughout the day. He is making more connections with language in context than we have ever seen before. He's doing really well at school and takes his weekly spelling test by hearing rather than by using his interpreter. She is still there for him, but he has chosen not to watch her during those tests and has been scoring really well on them without that extra support. Everyone who works with him is simply amazed by how well he is doing. His audiologist said "If I were the type of person who jumped up and down and yelled with excitement, that's what I'd be doing right now." He's the mellow and reserved type, but even he can hardly believe how well Ethan is doing.

It's hard to believe that he spent most of his kindergarten year being completely deaf. Going back to hearing has been a snap for him and his SLP at Children's feels very strongly that he's an auditory learner. No one is suggesting that he doesn't still require an interpreter, but everyone is saying how exciting it has been to see him make this huge leap.

Meanwhile, we are being billed for the Ci surgery. Our insurance company doesn't want to pay it and we're hoping that we can get Cochlear Corp. to pay since it was their fault that the device failed to begin with. It's a lot of money, enough to buy a house. I hate that we have to deal with this, but the fact that Ethan is thriving as a result of that surgery makes the red tape mess totally worthwhile.

Thursday, February 09, 2012

Ethan sings!


Since having his new cochlear implant, not only is Ethan making many more attempts at speaking, he is also starting to sing! Here is a short clip of him singing "Shine" by Rachel Coleman. He is reading the lyrics and watching Rachel perform the song in ASL while listening and singing. Ethan truly embodies "total communication", and sign language has been a very useful tool lately in helping him imagine the word that he's trying to speak. Whoever came up with the notion that sign language impairs spoken language has clearly never met my son.

You may not be able to see his new implant very well because the processor and headpiece are both brown and blend in perfectly with his hair. That they also match his new glasses is just an added bonus!