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!

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. 

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.

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.

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!

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. 

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. 

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.

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!

Big Boy Eyewear

For 6 years, Ethan has been wearing glasses that have earpieces that wrap around the back of his ears. They're a great option for active little boys, but the time has come to move on to a frame that doesn't encourage him to pull both arms out to the side as far as they'll go.

Ethan has historically dealt with his frustration by ripping off his glasses and throwing them. Luckily, he's only stepped on them once and it was done accidentally. His frames have always been metal and though they've been flexible, we've spent a lot of time in the optical store getting them adjusted. We're hoping that the plastic pair will take just as good a beating, but not require so many trips to the "glasses store". He needs to learn the correct way of putting them on and removing them, so I put together a power point presentation that highlights little kids with 2 hands at the temples as they carefully handle their glasses. We'll see if it helps.

In the meantime, he's aged by about 5 years in this new pair.

New Year, New Ear!

2 days post surgery, eating a favorite snack

If you've followed Ethan's story online or in person, then you realize that he has suffered for 2 years with a faulty implant. The issue was further complicated by a lousy rep from Cochlear Corp. (who has been replaced with someone professional) and a mostly non-verbal little guy who lacks the ability to communicate his experience via the traditional/typical routes. We've been saying his implant doesn't work (and he has refused to wear it) since 2009. Finally it has been removed and a new device put in its place. He came through the surgery and recovery with flying colors and in a few short weeks the new Ci will be activated and we'll be on our way. There's a lot more to say about the ramifications of the experience on Ethan's psyche and progress, but it doesn't feel productive in the least to go into that detail.

Since my last post here, we've also found out that Ethan has qualified for a grant for a service dog! He will get his dog in August 2012 and it will be both a hearing ear dog and an autism dog. The dog will be trained in search and rescue, so if Ethan ever got away from us (as he tries so diligently to do), the dog would be able to track his scent and help us find him quickly. He can also be tethered to the dog in public so that we would be able to go places and walk normally, rather than hold onto Ethan with the death grip to keep him from running away. The way we've had to function has prohibited me from signing with him in public because my hands are too busy keeping him safe. The way in which this dog will change our lives is far reaching and I'm still not sure it has totally sunk in for me yet. That we might feel less like prisoners to his autism and more like an average family who enjoy outings together is just a dream come true.

Ethan continues to do well in school. He is in the same classroom with the same staff as last year and they never cease to amaze with their skill set, compassion, communication skills, and general awesomeness. He definitely presents them with challenges, but they don't seemed phased by it and always have a method or idea to deal with his antics. I've heard there is a little girl who plays with him during recess each day and who likes to walk into the building holding his hand. We're not really seeing anything playmate-wise translate beyond the school walls, but hopefully that will come with time, and a little extra effort on my part to make it happen.

I was diagnosed with breast cancer (early stages) in July and had a double mastectomy in October. I have surgery again (reconstruction) in February and am on my way to a full recovery. I am very lucky to have caught it so early and to have so many wonderful friends, neighbors, and family members who have come to my side for support.

We're all really hoping that 2012 presents us with fewer challenges!

Ethan's First Vacation

Ethan at the beach with dad and mom

Our little threesome reached a new milestone this summer, our first family vacation! We've been looking forward to Ethan's first trip to the beach for years and this summer seemed like the right time. This trip was made even more special (and possible!) because many of our extended family members decided to join us. We rented a 4 bedroom house walking distance from the beach in Hilton Head Island. We had a very spacious kitchen and living area and a nice deck with table and chairs. The house came with bicycles as well, so there was always something to do. Ethan was over the moon with his aunt and uncles, his cousins, and grandparents all along for the fun.

Ethan continues to wear his left Ci and is steadily making progress with speech and responding to sounds again. He is enjoying summer school and has been going to the occasional appointment at the hospital as well as the neighborhood pool with mom. In August we'll travel to see his other set of grandparents and stop to visit with our friends on the way down and back.

Two areas where Ethan has been making huge strides lately are with eating and playing. He has always had a tough time with food (acid reflux, sensory issues, oral motor delays) and his autism has impacted his ability to really enjoy toys and the act of play. Lately we're seeing some neat imaginative play happening as well as a new interest in trying different foods. In fact, we hit another milestone with him recently when we were able to order him a meal from a menu (in a Lebanese restaurant of all places!) and watch him enjoy eating it. You can bet we'll become regulars at that place!

He has also made incredible strides in recent weeks with cochlear implant mapping sessions. Our amazing SLP and audiologist put their heads together and thought that maybe if we tried a mapping session in a new environment (during a speech session), that it would help Ethan relax and participate in the process. He has bad associations with the audiology clinic now and that has been a big part of the problem apparently. He still doesn't like the mapping process, not even close, but he is finally allowing our audiologist to take measurements without flipping over tables or head-banging during the course of the session.

We are also working with an in-home ABA consultant to help with behavior issues. We have a long way to go, but we're slowly making progress in a number of areas here as well.

I remain hopeful.