I have never been good at eye contact. Anyone that knows me knows that it takes a while for me to trust in a person enough to give that full on eye gaze during a conversation. Eye contact is so personal. The eyes truly are the windows to the soul and I don't open my windows too easily. You can read so much about a person by looking into their eyes. To me, it seems to be an almost psychic ability to draw on a person's true character through their eyes.
I also am a deep thinker with the active sort of brain that needs to focus on things other than a face while talking. I look around the room or look out a window to help the conversation flow. Rarely do I looking directly into your eyes.
Roa on the other hand, has excellent eye contact. I cannot believe how well he communicates just by looking at you. Happiness, fear, anger, weariness, excitement, disappointment,...all LOUD and CLEAR through those little peepers.
Beyond that, Roa "tells" us a lot of his needs through simply looking at us. I've mentioned in past posts that we, as parents, have a sort of psychic ability to read our children, but it still amazes me that I can know so much...just through his eyes.
"He needs a drink, has a wet diaper, needs to burp, wants some alone time, wants to go outside, is tired of that position ....".
All this verbalized through his eyes.
The technology of tomorrow promises more assistive devices based on eye gaze. I look forward....straight on with FULL contact, to tomorrow.
Wednesday, October 19, 2011
Monday, October 17, 2011
Closing the Gap
We were very fortunate to be a part of the annual Closing the Gap conference for Assistive technology in Minneapolis this past week. This conference is the leading AT gatherings in our nation for therapists and teachers of special needs (and a handful of us parents)! I attended alone on Thursday afternoon and was joined by Bryan and the boys Thursday evening. We took Roa into the exhibitors hall to check out the different computer programs, communication devices, adapted switches, mouses, joysticks, fun accessible games and software, mounting sytems for assistive tech devices on walkers and wheelchairs,..... soooooo much to look and see! We were all in techno overload!
Roa had fun running up and down the aisles in his trainer and it was nice for the sales reps to try out their wares on an actual kid!
Links to our faves:
Inclusive TLC products
http://inclusivetlc.com/Products/BrowseSection.aspx?psid=3&gpid=5
ablenet sounding board app and products
http://www.ablenetinc.com/Assistive-Technology/Communication/SoundingBoard
AMDI.net communicators
http://www.amdi.net/store/software/overlay-designer-pro.html
infogrip products and the ergotrackball!
http://www.infogrip.com/product_view.asp?RecordNumber=92
European design keyboard with eyegaze component "Lucy 4"
http://skilate.com/fs_assisttech_prod5_lucy.html
zot artz for all- products for creativity in special needs!
http://zotartz.com/
My Talk app for ipad/iphone
http://mytalktools.com/dnn/
Linggraphica apps
http://www.aphasia.com/
AND the COOLEST thing there!!!
Modular hose for mounting assistive tech!!
http://www.modularhose.com/applications/mh-at-kits/90670
Roa had fun running up and down the aisles in his trainer and it was nice for the sales reps to try out their wares on an actual kid!
Links to our faves:
Inclusive TLC products
http://inclusivetlc.com/Products/BrowseSection.aspx?psid=3&gpid=5
ablenet sounding board app and products
http://www.ablenetinc.com/Assistive-Technology/Communication/SoundingBoard
AMDI.net communicators
http://www.amdi.net/store/software/overlay-designer-pro.html
infogrip products and the ergotrackball!
http://www.infogrip.com/product_view.asp?RecordNumber=92
European design keyboard with eyegaze component "Lucy 4"
http://skilate.com/fs_assisttech_prod5_lucy.html
zot artz for all- products for creativity in special needs!
http://zotartz.com/
My Talk app for ipad/iphone
http://mytalktools.com/dnn/
Linggraphica apps
http://www.aphasia.com/
AND the COOLEST thing there!!!
Modular hose for mounting assistive tech!!
http://www.modularhose.com/applications/mh-at-kits/90670
Monday, October 3, 2011
School Days, Bus Wheels, and Voice
I greatly apologize to all of you Rojo Fans who have been patiently waiting for this busy mom to get her butt in that computer chair and blog about the King and his start to the school year!
Update, updates...
First off, Roa is off to Normandy Park Early Childhood Center three mornings a week in the Early Childhood Special Needs classroom with Miss Laurie. He LOVES school! He has 7 friends in his class and a group of wonderful teachers, therapists, and aides. We are greatly impressed with the staff at school. Pictures of Roa's days are sent home with notes, phones calls, and fun art projects. He is in Learning Heaven!
Besides the ECSE class, Roa is also continuing to attend the Tuesday evening Early Childhood Famiy Education class with Daddy. Miss Janet was happy to have Roa return to the group and he appreciates the special time with Dad!
On Tuesday mornings, Mom and Gunnar attend the Baby Class and Roa gets to go to Sib Care. Terri has been his aide during this time and has been wonderful. Another great morning at Normandy.
Once again, I need to get on my soapbox and say that Early Childhood Family Education is VERY wonderful and a great resource that more families should take advantage of in Minnesota. Typical to most of these extra programs, I think alot of the parents and children that could greatly benefit from the program do not attend ECFE. The guidance from educated staff about child development, songs/games/play activities for increased learning and bonding time with young ones is something so many parents need, especially in our country with so many developmentally delayed children, dropping test scores, and limited parent support in schools. Off the soapbox...
Roa continues to receive speech therapy, occupational therapy and music therapy at Functional Kids 3 afternoons per week. He attends Conductive Education on Thursday mornings and Saturdays. Physical Therapy at Courage Center will begin soon on Fridays. UGHHHH! Once again, we are off and running here in the land of CP!
Gunnar has adjusted well to the variety of places and appointments we attend. He loves the waiting room at Functional Kids with its toys and admiring staff and the vast space at Courage Center where he can run! Yes, run. Gunnar is at full speed now at 10 months of age. He is a crazy climber, loves emptying cupboards, climbing stairs, and kicking balls! Favorite activity for G-man? Riding on the back of the gait trainer with Big Brother Roa. There is alot of brotherly love and yelling when Roa gets off that school bus at the end of the morning!
Which leads to the bus.....
We have a love/hate relationship with the bus right now at the Thayer household. The King adores that bus! Is so excited to ride. However, we have had some issues with proper seating for him, a rude driver, and a tumble off the seat when school staff were taking from the bus resulting in a bump, scrape and bruise.
But, Roa loves it, so we will keep trying to make it work.
Other news....
Roa had an assessment for a wheelchair last week. We will be doing a trial with the Quickie Zippie Zone manual chair next week or so. That will help us with bus transport and be another mode of mobility for Roa in his varied environments. We decided to go with a manual chair instead of the stroller variety to give Roa some choice in where he goes and work on arm/hand skill.
Roa had a two week trial with the Dynavox Maestro communication system. It is quite a neat technological tool! However, it seems to be too much for Roa right now. We will stick to the iPad. Roa has lost some of his enthusiasm for his iPad. We have a buzzilion apps that gage from fine motor skills, communication, games, stories..... He likes Netflix and Youtube the best... :)
Julie at Functional Kids has been working at finding an app that works best to help Roa not only make choices, but gives him a voice in conversation with us and peers. Sounding Board has been the best thus for for Roa.
Thats all I got for now... AND here are a few fun pics from our little scholar!
Ta ta for now!
Update, updates...
First off, Roa is off to Normandy Park Early Childhood Center three mornings a week in the Early Childhood Special Needs classroom with Miss Laurie. He LOVES school! He has 7 friends in his class and a group of wonderful teachers, therapists, and aides. We are greatly impressed with the staff at school. Pictures of Roa's days are sent home with notes, phones calls, and fun art projects. He is in Learning Heaven!
Besides the ECSE class, Roa is also continuing to attend the Tuesday evening Early Childhood Famiy Education class with Daddy. Miss Janet was happy to have Roa return to the group and he appreciates the special time with Dad!
On Tuesday mornings, Mom and Gunnar attend the Baby Class and Roa gets to go to Sib Care. Terri has been his aide during this time and has been wonderful. Another great morning at Normandy.
Once again, I need to get on my soapbox and say that Early Childhood Family Education is VERY wonderful and a great resource that more families should take advantage of in Minnesota. Typical to most of these extra programs, I think alot of the parents and children that could greatly benefit from the program do not attend ECFE. The guidance from educated staff about child development, songs/games/play activities for increased learning and bonding time with young ones is something so many parents need, especially in our country with so many developmentally delayed children, dropping test scores, and limited parent support in schools. Off the soapbox...
Roa continues to receive speech therapy, occupational therapy and music therapy at Functional Kids 3 afternoons per week. He attends Conductive Education on Thursday mornings and Saturdays. Physical Therapy at Courage Center will begin soon on Fridays. UGHHHH! Once again, we are off and running here in the land of CP!
Gunnar has adjusted well to the variety of places and appointments we attend. He loves the waiting room at Functional Kids with its toys and admiring staff and the vast space at Courage Center where he can run! Yes, run. Gunnar is at full speed now at 10 months of age. He is a crazy climber, loves emptying cupboards, climbing stairs, and kicking balls! Favorite activity for G-man? Riding on the back of the gait trainer with Big Brother Roa. There is alot of brotherly love and yelling when Roa gets off that school bus at the end of the morning!
Which leads to the bus.....
We have a love/hate relationship with the bus right now at the Thayer household. The King adores that bus! Is so excited to ride. However, we have had some issues with proper seating for him, a rude driver, and a tumble off the seat when school staff were taking from the bus resulting in a bump, scrape and bruise.
But, Roa loves it, so we will keep trying to make it work.
Other news....
Roa had an assessment for a wheelchair last week. We will be doing a trial with the Quickie Zippie Zone manual chair next week or so. That will help us with bus transport and be another mode of mobility for Roa in his varied environments. We decided to go with a manual chair instead of the stroller variety to give Roa some choice in where he goes and work on arm/hand skill.
Roa had a two week trial with the Dynavox Maestro communication system. It is quite a neat technological tool! However, it seems to be too much for Roa right now. We will stick to the iPad. Roa has lost some of his enthusiasm for his iPad. We have a buzzilion apps that gage from fine motor skills, communication, games, stories..... He likes Netflix and Youtube the best... :)
Julie at Functional Kids has been working at finding an app that works best to help Roa not only make choices, but gives him a voice in conversation with us and peers. Sounding Board has been the best thus for for Roa.
Thats all I got for now... AND here are a few fun pics from our little scholar!
Ta ta for now!
Wednesday, September 14, 2011
Pass the Remote
The Thayers had a little Labor Day get away. When Bryan came come from work that Friday and I immediately opened a beer and sat on our front step, I think he realized how much I needed a break! :)
We travelled to Duluth, MN. A nice drive and the kids handled the car for 3 whole hours! Unbelievable! We stayed at the Edgewater Resort and Waterpark. Fun was had by all, Rojo the most, as our poolside room looked onto the Lazy River and Tube Splash Zone!
When Gunnar needed his naps I would sneak away for some selfish ME time to relax on the bed, watch the lazy river, and catch up on cable TV, which we do not have at home.
While channel surfing, I realized just how much watching TV is like raising a child with a disability. With cable tv, you have a such a variety of shows to pick, but what one is right for you? Each program boasts to be the best, but there is no place to go that tells you if it is worth your time and energy.
While clicking that remote, you run into the History Channel that tell you of the past. You see how far we have come, view some nightmares of yester years, and hope that history is not repeated.
Next you come to Discovery Channel and see the wonders that science and investigations can bring to help our children in the future. You feel so hopeful that, one day, Science and it's advances will help your child.
Hope and Pray.....
Which leads to the Inspirational Channel. The religious hymns, prayers, and bible verses drive you to put your child's future in the hands of our Creator. Jesus, take the wheel. And you pray with all your heart and soul to be the next miracle.
But until that miraclous day, let's see where Science has lead us today on the Learning Channel. Lets see mysteries of the brain that have been uncovered. Lets see what method of therapy or medical treatment we can look into, research, contect with.
After so much thought provoking, intellectual simulation, it is time to click on to to the Comedy Central. It is life, after all, and if you can't laugh at the crazy ups and downs we face each day, then you will go Insane!
Speaking of insane,... time for a little Psycho-social drama with Dr. Phil, Jerry Springer, Real Housewives and the likes.. Reality TV that, come on, you call that REAL? Spend a day in my shoes and I will show you real LIFE with limited sleep, family drama, fights, tears, and make ups. Drama unfolds everyday as you get on the special needs rollercoaster of life. Exclusions from family trips and get-togethers, uncaring, uninterested relatives that hurt and anger you, isolation from other parents or friends who cannot relate, battles with insurance companies, copay woes, budgets and fears of future plans. THAT is reality!!
On and on you surf until your head is swimming and you wish that the National Anthem would play and be followed by that wonderful BEEEEP sound of the television going off the air...
Yet as we all know, those days are past and the TV plays around the clock. The never ending dramas, searches, hopes, and fears that a click of the remote can't fix.
We travelled to Duluth, MN. A nice drive and the kids handled the car for 3 whole hours! Unbelievable! We stayed at the Edgewater Resort and Waterpark. Fun was had by all, Rojo the most, as our poolside room looked onto the Lazy River and Tube Splash Zone!
When Gunnar needed his naps I would sneak away for some selfish ME time to relax on the bed, watch the lazy river, and catch up on cable TV, which we do not have at home.
While channel surfing, I realized just how much watching TV is like raising a child with a disability. With cable tv, you have a such a variety of shows to pick, but what one is right for you? Each program boasts to be the best, but there is no place to go that tells you if it is worth your time and energy.
While clicking that remote, you run into the History Channel that tell you of the past. You see how far we have come, view some nightmares of yester years, and hope that history is not repeated.
Next you come to Discovery Channel and see the wonders that science and investigations can bring to help our children in the future. You feel so hopeful that, one day, Science and it's advances will help your child.
Hope and Pray.....
Which leads to the Inspirational Channel. The religious hymns, prayers, and bible verses drive you to put your child's future in the hands of our Creator. Jesus, take the wheel. And you pray with all your heart and soul to be the next miracle.
But until that miraclous day, let's see where Science has lead us today on the Learning Channel. Lets see mysteries of the brain that have been uncovered. Lets see what method of therapy or medical treatment we can look into, research, contect with.
After so much thought provoking, intellectual simulation, it is time to click on to to the Comedy Central. It is life, after all, and if you can't laugh at the crazy ups and downs we face each day, then you will go Insane!
Speaking of insane,... time for a little Psycho-social drama with Dr. Phil, Jerry Springer, Real Housewives and the likes.. Reality TV that, come on, you call that REAL? Spend a day in my shoes and I will show you real LIFE with limited sleep, family drama, fights, tears, and make ups. Drama unfolds everyday as you get on the special needs rollercoaster of life. Exclusions from family trips and get-togethers, uncaring, uninterested relatives that hurt and anger you, isolation from other parents or friends who cannot relate, battles with insurance companies, copay woes, budgets and fears of future plans. THAT is reality!!
On and on you surf until your head is swimming and you wish that the National Anthem would play and be followed by that wonderful BEEEEP sound of the television going off the air...
Yet as we all know, those days are past and the TV plays around the clock. The never ending dramas, searches, hopes, and fears that a click of the remote can't fix.
Monday, September 12, 2011
Sleep study
Roa had a visit to Dr. Sleep at Gillette on Friday. Dr Garcia is such a kind, calming man---Makes us want to take a nap... all of us but Roa, that is.
Roa is undergoing a sleep study. He wears a "watch" around the clock for two weeks that is actually a device that measures movement. We are looking at rest times vs. sleep times and trying to get an approximate measure of how much Roa is awake during the night. We also have increased his trazadone sleep medication to suit his growing size.
We continue to try to explore how to help Roa and the entire Thayer family sleep with more ease.
On that note..... Gunnar is awakening from his morning slumber....
Tata for now!
Roa is undergoing a sleep study. He wears a "watch" around the clock for two weeks that is actually a device that measures movement. We are looking at rest times vs. sleep times and trying to get an approximate measure of how much Roa is awake during the night. We also have increased his trazadone sleep medication to suit his growing size.
We continue to try to explore how to help Roa and the entire Thayer family sleep with more ease.
On that note..... Gunnar is awakening from his morning slumber....
Tata for now!
School for Roa!
Roa had his first day of school today! Mom was so nervous! Roa on the other hand, has been walking around our house with his backpack on for the past week! Ready to go.
Bryan, Gunnar and I took him in this morning. We were nervous to leave our nonverbal, demanding boy in the hands of strangers. The teacher, Lori, and therapists, Mary and Laura, visited our home last week so complete strangers they were not, but it was the very first time Roa would be with people other an those who know him well.
I wrote a chapter book of notes to try and communicate what works best for Roa...poor teaching staff. What an uptight Momma! But I want everything to go smoothly.
Roa had a great first day! When Gunnar and I returned to pick him up, he was giggly and happy. Laura explained his day and all is activities and how they adapted it to work for Roa. It is really a warm, caring environment! I was relieved and proud that Roa is my little school bug!
Now for Wednesday... let's see how this nervous momma lets go and puts her boy on a school bus.... stay tuned!
Bryan, Gunnar and I took him in this morning. We were nervous to leave our nonverbal, demanding boy in the hands of strangers. The teacher, Lori, and therapists, Mary and Laura, visited our home last week so complete strangers they were not, but it was the very first time Roa would be with people other an those who know him well.
I wrote a chapter book of notes to try and communicate what works best for Roa...poor teaching staff. What an uptight Momma! But I want everything to go smoothly.
Roa had a great first day! When Gunnar and I returned to pick him up, he was giggly and happy. Laura explained his day and all is activities and how they adapted it to work for Roa. It is really a warm, caring environment! I was relieved and proud that Roa is my little school bug!
Now for Wednesday... let's see how this nervous momma lets go and puts her boy on a school bus.... stay tuned!
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