Sunday, October 9, 2016
Summer Photos 2016
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| Fairport Harbor |
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| One of Kevin's fabulous sitters! |
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| Summer Ice Cream (Bananas & Peaches) |
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| Go Steelers |
Happy 12th Birthday - October 6, 2016
Gulp! Kevin is 12 years old!!!
Kevin's birthday was on Thursday, which is our volunteer day at the nursing home. After Songs of Faith we passed out some treats we brought to share with our new friends and played a balloon toss. Kevin even tolerated having the group sing "Happy Birthday" to him. He especially loved the helium balloons he got to take home.
A couple other favorites to make his day special were birthday videos from his cousins and FaceTime calls with family.
But probably his favorite was getting some much needed free time to play at home after a very busy week. I love it when Kevin plays. He will busy himself going up and down the basement steps. Sometimes bringing toys up from the basement or toys from the family room to the basement. I love hearing him play with his shake and go cars and watching them go. And I absolutely love seeing toys scattered about in a mess on the floor because it means he is playing. He will clean them up but sometimes I like to leave it that way because it makes me smile to know that he did it. Today, he surprised me by asking me to put a music cd in the player. All good things! Maybe his play time will get even more purposeful when he has some free time now that our schedule is so much more busy going out of the house than we are used to.
On Friday, we met Kevin's Aunt Sarah and Cousin Ethan at the Cleveland Zoo.
And on Saturday, the three of us spent the day together by going to Ohio University Homecoming. Jon and I met our freshman year at OU on Homecoming weekend - 25 years ago! This was Kevin's first OU visit. He had big smiles while watching the OU marching band in the parade. We walked around the campus and uptown. While uptown, Kevin and I were outside people watching - while Jon was t-shirt shopping. As we were sitting there, three male college students came up to Kevin. The first guy was walking with forearm crutches and he had some encouraging words for Kevin. As he left, I said a prayer of blessing for him as I thought about all the walking around campus that is required. The other two students were more of a surprise to me. They were just walking by with their friends and made the effort to stop and shake Kevin's hand. It gives me hope for the future.
I'm hoping that my next upcoming posts will be some catch up from the summer.
Kevin has a Voice!
First day using Kevin's Talker at home - October 5, 2016
When Grandma arrived today we greeted her using the Talker. I modeled saying HELLO and asked Kevin to say HELLO too - and he did.
Then I used the word BIRTHDAY to tell Grandma that Kevin’s BIRTHDAY is tomorrow. I asked Kevin to repeat me and tell Grandma. Instead he chose to say EAT - because he was waiting to eat breakfast - LOL it’s working! Kevin is communicating. YEAH!!!!
In the evening, Kevin brought me his DVD player which is how he tells me he wants to watch a movie. So I grabbed the Talker and modeled saying - Oh, you WANT to watch a movie? I thought he was going to repeat and say WANT after me but instead he said GO - which was very appropriate, GO - play the movie already.
As bedtime was approaching, I asked Kevin: Do you WANT to watch Wheel of Fortune or are you ready to GO to bed? He actually answered STOP - which I presumed was another way of saying he was ready for bed and he didn't protest and went to bed.
Spasticity Evaluation Day
You might be wondering what spasticity means. A Google search defines it as:
Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech, and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement.
It can also mean, muscle weakness and is typical of individuals with cerebral palsy.
Last Tuesday was a long day. We left the house before 8:30AM and didn't get home until after 5:30PM.
The Spasticity Clinic Evaluation consisted of an evaluation with PT and OT in the morning and a Psychology evaluation after lunch.
We added a couple extra things to our schedule while we were at the hospital: after our PT/OT evaluation we had a communication therapy session before breaking for lunch.
After the Psychology appointment we had about an hour break before going to Kevin's Dance class offered at the hospital.
During our breaks we were able to sit outside in the sun, use the walking path outside on the hospital grounds, and explore some new parts of the hospital. And guess what we found!? A family changing room for big kids/adults. Yay, hospital visits just got easier!
I wasn't too nervous about the evaluation with Physical and Occupational Therapists because the OT we have been working with in our AAC sessions and Kevin has been very comfortable with her. So I felt like that would help Kevin feel less stressed and fearful during the evaluation. But it did get stressful. I realized later after we were home, that I think the turning point was when PT asked Kevin to creep on his hands and knees. Probably brought back bad memories of all the YEARS of crawling and creeping he has done. And it went downhill from there for a while. He was mad. Trying to hurt me, throw things. The OT, left the room and brought back the Talker we have been using with her in our AAC therapy sessions. When she returned and gave Kevin the opportunity to use it - he immediately said STOP (as in I want to stop this evaluation)! And I think after that he said GO (as in I want to go, get out of here). Very appropriate. We gave Kevin a break to calm down - while they asked me a bunch of questions to answer in regards to the spasticity evaluation. He eventually completed most of what they needed to evaluate him on.
I had received a lot of paperwork in preparation of our evaluation with the Psychologist. The questions gave me so much anxiety that I couldn't complete it. I tried to let Jon do it but his answers were giving me anxiety too so we just quit. So never having met with a Psychologist, I began conjuring up fearful thoughts in my head about what this evaluation was going to be. And of course it was all in my head and as soon as I explained what happened with the questionnaire she quickly interceded and told me that she had a more appropriate questionnaire to use for Kevin instead. I also ended up feeling like this was a great addition to the evaluation. It will give the team a clearer picture of what our goals and intentions are with Kevin.
At the end of this long day, I was not expecting much from Kevin by taking him to his (second) Dance class (the first class didn't go smoothly). But he surprised me by joining in with my help and participating. He even smiled during the parachute activity. I was very proud of him!
In two weeks we will meet with the entire Spasticity Team of doctors and therapists.
Basically the Spasticity clinic will help us determine if Kevin needs surgery to help improve his walking and how soon or how long we can wait to do this. They will help us make a plan for this which is always a high priority for us. My biggest fear, regarding surgery is I don't want him to lose the walking ability that he currently has. But I desperately want Kevin's walking to improve and what if we have the surgery and then we think - why didn't we do this sooner! At this point in time, communication (with Kevin's new Talker) and improved distance walking are our top priorities for Kevin.
Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech, and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement.
It can also mean, muscle weakness and is typical of individuals with cerebral palsy.
Last Tuesday was a long day. We left the house before 8:30AM and didn't get home until after 5:30PM.
The Spasticity Clinic Evaluation consisted of an evaluation with PT and OT in the morning and a Psychology evaluation after lunch.
We added a couple extra things to our schedule while we were at the hospital: after our PT/OT evaluation we had a communication therapy session before breaking for lunch.
After the Psychology appointment we had about an hour break before going to Kevin's Dance class offered at the hospital.
During our breaks we were able to sit outside in the sun, use the walking path outside on the hospital grounds, and explore some new parts of the hospital. And guess what we found!? A family changing room for big kids/adults. Yay, hospital visits just got easier!
I wasn't too nervous about the evaluation with Physical and Occupational Therapists because the OT we have been working with in our AAC sessions and Kevin has been very comfortable with her. So I felt like that would help Kevin feel less stressed and fearful during the evaluation. But it did get stressful. I realized later after we were home, that I think the turning point was when PT asked Kevin to creep on his hands and knees. Probably brought back bad memories of all the YEARS of crawling and creeping he has done. And it went downhill from there for a while. He was mad. Trying to hurt me, throw things. The OT, left the room and brought back the Talker we have been using with her in our AAC therapy sessions. When she returned and gave Kevin the opportunity to use it - he immediately said STOP (as in I want to stop this evaluation)! And I think after that he said GO (as in I want to go, get out of here). Very appropriate. We gave Kevin a break to calm down - while they asked me a bunch of questions to answer in regards to the spasticity evaluation. He eventually completed most of what they needed to evaluate him on.
I had received a lot of paperwork in preparation of our evaluation with the Psychologist. The questions gave me so much anxiety that I couldn't complete it. I tried to let Jon do it but his answers were giving me anxiety too so we just quit. So never having met with a Psychologist, I began conjuring up fearful thoughts in my head about what this evaluation was going to be. And of course it was all in my head and as soon as I explained what happened with the questionnaire she quickly interceded and told me that she had a more appropriate questionnaire to use for Kevin instead. I also ended up feeling like this was a great addition to the evaluation. It will give the team a clearer picture of what our goals and intentions are with Kevin.
At the end of this long day, I was not expecting much from Kevin by taking him to his (second) Dance class (the first class didn't go smoothly). But he surprised me by joining in with my help and participating. He even smiled during the parachute activity. I was very proud of him!
In two weeks we will meet with the entire Spasticity Team of doctors and therapists.
Basically the Spasticity clinic will help us determine if Kevin needs surgery to help improve his walking and how soon or how long we can wait to do this. They will help us make a plan for this which is always a high priority for us. My biggest fear, regarding surgery is I don't want him to lose the walking ability that he currently has. But I desperately want Kevin's walking to improve and what if we have the surgery and then we think - why didn't we do this sooner! At this point in time, communication (with Kevin's new Talker) and improved distance walking are our top priorities for Kevin.
LAMP Words for Life
Last Monday, Jon and I attended the LAMP training class presented by AAC and Autism. The training taught us the method behind using LAMP - Language Acquisition through Motor Planning: AAC Strategies for Promoting the Development of Communication for Individuals with Autism Spectrum Disorder. (Although, Kevin does not have an Autism diagnosis it is very appropriate for him.) Basically, LAMP is a method used to teach language through an AAC (Alternative Augmentative Communication) device.
My overall thoughts and feelings from this training were all good (Jon too). I didn't feel overwhelmed with information, I feel motivated! It feels like when we first discovered Glenn Doman in Philadelphia and the program that we started with Kevin before he was two years old. It made sense and felt like a good fit and gave me hope. It feels so good to feel like that again!
Some of you may know that I have an undergraduate degree in Speech Language Pathology but did not go on to graduate school. It's kind of neat to see things like that come around again. Just having that basic background (from many years ago) gave me a little extra confidence and comfort in the training class. Something that was mentioned in class was that AAC devices have changed significantly and even the theory behind who could be successful with an AAC device. So it's probably a good thing I never went on to grad school and work in the field so I wasn't given pre-conceived notions in my head regarding who couldn't use a device and then having a son that could ultimately benefit and be successful with one. Jon and I liked how the instructor challenged the other therapists and educators in the room (there was only one other parent in attendance at the training). Jon even commented to the class how we were told earlier this year after a SLP evaluation that Kevin would never talk and would not benefit from therapy.
By giving Kevin an electronic communication device that talks for him - we still have not given up on Kevin ever using his own voice to talk. There is a lot of research to support that non-verbal kids (of any age) CAN develop verbal speech while using a Talker/ AAC device.
Here are some other points that we learned in our class and our understanding of the LAMP method and how the Talker will work.
LAMP uses a speech-generating device that pairs consistent motor patterns with consistent auditory output as in natural speech development.
Pressing a button is an easier task to motor plan than articulating a word.
Utilizing consistent motor patterns to access words leads to automaticity decreasing the need to cognitively motor plan each time they speak.
They know that non-verbal kids that begin to use this method with a device (no matter what their chronological age) progress in using the device as their language and voice as in natural speech - which means, they begin using one word to communicate and after they acquire so many words can progress to two-word phrases and so on to sentences.
So every word on the device has a consistent and unique motor plan and will become ingrained.
We use "core vocabulary" initially because these words can be used in many ways while learning language just as natural language in a normal developing child. For example, the core words Kevin is using right now are: stop, go, help, want, more, etc.
When you see the device, you may think the picture icons are confusing. But the pictures are almost irrelevant. It has more to do with the motor plan of getting the device to say the words. As in typing on a keyboard or playing a piano - you don't need to look at the keys.
With this language method we are to always assume competence - which we have always done with Kevin and let him know how smart we think he is - despite our inconsistent ways of gaining that information from him.
So obviously we are still processing and learning how all this works but like I said it makes sense to me and I feel really good about it. Kevin and I will continue our AAC therapy sessions with the SLP and OT to help us be successful. They have been so enthusiastic and great at answering all our questions as we begin this journey.
Initially, we will be using a fair amount of modeling with the Talker to show Kevin how to use it to communicate with anyone. So next time you are with Kevin we will encourage you to use Kevin's Talker to talk to him.
This week was Kevin's birthday - I can't think of a better gift for Kevin than to give him a voice! I wonder how long it will take me not to get tears of hope in my eyes every time I hear or see those words!
My overall thoughts and feelings from this training were all good (Jon too). I didn't feel overwhelmed with information, I feel motivated! It feels like when we first discovered Glenn Doman in Philadelphia and the program that we started with Kevin before he was two years old. It made sense and felt like a good fit and gave me hope. It feels so good to feel like that again!
Some of you may know that I have an undergraduate degree in Speech Language Pathology but did not go on to graduate school. It's kind of neat to see things like that come around again. Just having that basic background (from many years ago) gave me a little extra confidence and comfort in the training class. Something that was mentioned in class was that AAC devices have changed significantly and even the theory behind who could be successful with an AAC device. So it's probably a good thing I never went on to grad school and work in the field so I wasn't given pre-conceived notions in my head regarding who couldn't use a device and then having a son that could ultimately benefit and be successful with one. Jon and I liked how the instructor challenged the other therapists and educators in the room (there was only one other parent in attendance at the training). Jon even commented to the class how we were told earlier this year after a SLP evaluation that Kevin would never talk and would not benefit from therapy.
By giving Kevin an electronic communication device that talks for him - we still have not given up on Kevin ever using his own voice to talk. There is a lot of research to support that non-verbal kids (of any age) CAN develop verbal speech while using a Talker/ AAC device.
Here are some other points that we learned in our class and our understanding of the LAMP method and how the Talker will work.
LAMP uses a speech-generating device that pairs consistent motor patterns with consistent auditory output as in natural speech development.
Pressing a button is an easier task to motor plan than articulating a word.
Utilizing consistent motor patterns to access words leads to automaticity decreasing the need to cognitively motor plan each time they speak.
They know that non-verbal kids that begin to use this method with a device (no matter what their chronological age) progress in using the device as their language and voice as in natural speech - which means, they begin using one word to communicate and after they acquire so many words can progress to two-word phrases and so on to sentences.
So every word on the device has a consistent and unique motor plan and will become ingrained.
We use "core vocabulary" initially because these words can be used in many ways while learning language just as natural language in a normal developing child. For example, the core words Kevin is using right now are: stop, go, help, want, more, etc.
When you see the device, you may think the picture icons are confusing. But the pictures are almost irrelevant. It has more to do with the motor plan of getting the device to say the words. As in typing on a keyboard or playing a piano - you don't need to look at the keys.
With this language method we are to always assume competence - which we have always done with Kevin and let him know how smart we think he is - despite our inconsistent ways of gaining that information from him.
So obviously we are still processing and learning how all this works but like I said it makes sense to me and I feel really good about it. Kevin and I will continue our AAC therapy sessions with the SLP and OT to help us be successful. They have been so enthusiastic and great at answering all our questions as we begin this journey.
Initially, we will be using a fair amount of modeling with the Talker to show Kevin how to use it to communicate with anyone. So next time you are with Kevin we will encourage you to use Kevin's Talker to talk to him.
This week was Kevin's birthday - I can't think of a better gift for Kevin than to give him a voice! I wonder how long it will take me not to get tears of hope in my eyes every time I hear or see those words!
Sunday, October 2, 2016
August & September Updates
Dr. Nemeh
In August, Kevin had an appointment with Dr. Nemeh. As we were driving up I began to think how it had been several months since we had seen any noticeable changes in Kevin after his treatments. Dr. Nemeh and Cathy pulled in at the same time and while we were still in the parking lot, Dr. Nemeh began to tell me about a new machine that he got since our last session. So then I think to myself - well of course, I'm going to want to give this new machine a try for a few visits.
The new machine is a Pulsed Electromagnetic Field (PEMF) therapy. After Kevin's regular treatment session with Dr. Nemeh we went into a separate room to use the device because of its electromagnetic field. Dr. Nemeh began commenting on some of the effects it was having on Kevin and I wasn't seeing it and so he put the device on my back for me to experience it. Initially I didn't feel anything unusual but it didn't take long and I was feeling it and watching my right arm and hand quivering back and forth. Then he put it on my pelvis area and that was also a very powerful and strange feeling. I probably only experienced it for a minute on my back and a minute on my pelvis. I don't think I could have lasted much longer than that. He went back to treating Kevin and I understood why Kevin soon got up and walked away from it. His session ended and we went home. That night I had the best sleep I have had in a very long time. And when I got up in the morning I had no pain, discomfort, or stiffness. I got down on my mat to do my yoga stretches and breezed through them because I felt so good. This got me thinking how I don't really know how Kevin feels on a daily basis, he like me, could have some daily aches and pains that go unnoticed by others - so if these treatments with Dr. Nemeh give him relief in that way it would be worth it. I was pain free for a full week and it was still a lesser degree of discomfort I was feeling.
It wasn't long after this treatment session with Dr. Nemeh that we began hearing an increase in Kevin's vocal sounds. About a week later we were at church and I had tears of hope because I could hardly hear the priest over all the sounds Kevin was making. I said to the priest afterwards I know you understand that I couldn't shush Kevin. When a kid is learning to walk you don't push him down - right!?
Swimming
We continue to go swimming. I try to take him once a week on my own and we also signed up for private swim lessons. He took to his instructor very well and is very happy to be swimming.
Nursing Home Volunteer
In September, Kevin and I started volunteering at a nursing home. It is the nursing home I worked at over a decade ago before Kevin was born. I contacted my boss in the activity department and told her we were interested in volunteering. Our initial meeting with her did not go well at all. It was a totally new environment for Kevin and I think his best reference to it was a doctor/hospital setting and he just wasn't sure what was expected of him. It was bad. So I was happily surprised when we arrived for our first day that she had gotten us the "good" name tags with the magnetic back instead of pins - which gave me some encouragement. And I am happy to say that we have had our fourth visit and I am finally seeing more smiles from Kevin and more of his happy self come through. He is finally getting comfortable with the people we see on a weekly basis.
Dance Class
I also signed Kevin up for the Dance Unlimited. This is a dance class lead by a pediatric physical therapist at Children's hospital. The class is for kids of all abilities. They adapt the movements based on each kid's ability. Once again this is a new activity with new people and our first class did not go well. It started out ok but then he got overstimulated and was done and would only observe the rest of the class. The class only meets twice a month - so this might take longer for him to get comfortable with it.
In August, Kevin had an appointment with Dr. Nemeh. As we were driving up I began to think how it had been several months since we had seen any noticeable changes in Kevin after his treatments. Dr. Nemeh and Cathy pulled in at the same time and while we were still in the parking lot, Dr. Nemeh began to tell me about a new machine that he got since our last session. So then I think to myself - well of course, I'm going to want to give this new machine a try for a few visits.
The new machine is a Pulsed Electromagnetic Field (PEMF) therapy. After Kevin's regular treatment session with Dr. Nemeh we went into a separate room to use the device because of its electromagnetic field. Dr. Nemeh began commenting on some of the effects it was having on Kevin and I wasn't seeing it and so he put the device on my back for me to experience it. Initially I didn't feel anything unusual but it didn't take long and I was feeling it and watching my right arm and hand quivering back and forth. Then he put it on my pelvis area and that was also a very powerful and strange feeling. I probably only experienced it for a minute on my back and a minute on my pelvis. I don't think I could have lasted much longer than that. He went back to treating Kevin and I understood why Kevin soon got up and walked away from it. His session ended and we went home. That night I had the best sleep I have had in a very long time. And when I got up in the morning I had no pain, discomfort, or stiffness. I got down on my mat to do my yoga stretches and breezed through them because I felt so good. This got me thinking how I don't really know how Kevin feels on a daily basis, he like me, could have some daily aches and pains that go unnoticed by others - so if these treatments with Dr. Nemeh give him relief in that way it would be worth it. I was pain free for a full week and it was still a lesser degree of discomfort I was feeling.
It wasn't long after this treatment session with Dr. Nemeh that we began hearing an increase in Kevin's vocal sounds. About a week later we were at church and I had tears of hope because I could hardly hear the priest over all the sounds Kevin was making. I said to the priest afterwards I know you understand that I couldn't shush Kevin. When a kid is learning to walk you don't push him down - right!?
Swimming
We continue to go swimming. I try to take him once a week on my own and we also signed up for private swim lessons. He took to his instructor very well and is very happy to be swimming.
Nursing Home Volunteer
In September, Kevin and I started volunteering at a nursing home. It is the nursing home I worked at over a decade ago before Kevin was born. I contacted my boss in the activity department and told her we were interested in volunteering. Our initial meeting with her did not go well at all. It was a totally new environment for Kevin and I think his best reference to it was a doctor/hospital setting and he just wasn't sure what was expected of him. It was bad. So I was happily surprised when we arrived for our first day that she had gotten us the "good" name tags with the magnetic back instead of pins - which gave me some encouragement. And I am happy to say that we have had our fourth visit and I am finally seeing more smiles from Kevin and more of his happy self come through. He is finally getting comfortable with the people we see on a weekly basis.
Dance Class
I also signed Kevin up for the Dance Unlimited. This is a dance class lead by a pediatric physical therapist at Children's hospital. The class is for kids of all abilities. They adapt the movements based on each kid's ability. Once again this is a new activity with new people and our first class did not go well. It started out ok but then he got overstimulated and was done and would only observe the rest of the class. The class only meets twice a month - so this might take longer for him to get comfortable with it.
Alternative Augmentative Communication (AAC)
In August, we found out that our insurance company would not cover any of the costs for a communication device for Kevin. He had an evaluation in May and we waited three months to find out they wouldn't even cover a trial. Fortunately, the company that makes the device also offers an app for the iPad. The device was $7,000 and the iPad app is $300 - adding up to be about $1,000 with all costs included (iPad and accessories). Kevin has had a couple AAC therapy sessions to become familiar with it and seems to be doing well. Jon and I will be attending an all day training with the app on October 3. I am so anxious to get started with Kevin and his Talker.
Spasticity Clinic
We had a second appointment with the physiatrist in August. Nothing new to report. Basically we are waiting for the Spasticity clinic to find out what the team will recommend for Kevin and what the plan will be. On October 4 we have an all day evaluation at the hospital. We will meet with physical and occupational therapy in the morning. Sneak in a communication therapy session with the iPad before lunch. Have lunch at the hospital. After lunch we meet with a psychologist. This is also the day of his dance class later in the afternoon. I'm not sure if we will be staying for that or not. On October 18, we meet with the whole spasticity team: physiatrist, orthopedic, physical therapist, occupational therapist, psychologist, etc to find out what they recommend.
In August, we found out that our insurance company would not cover any of the costs for a communication device for Kevin. He had an evaluation in May and we waited three months to find out they wouldn't even cover a trial. Fortunately, the company that makes the device also offers an app for the iPad. The device was $7,000 and the iPad app is $300 - adding up to be about $1,000 with all costs included (iPad and accessories). Kevin has had a couple AAC therapy sessions to become familiar with it and seems to be doing well. Jon and I will be attending an all day training with the app on October 3. I am so anxious to get started with Kevin and his Talker.
Spasticity Clinic
We had a second appointment with the physiatrist in August. Nothing new to report. Basically we are waiting for the Spasticity clinic to find out what the team will recommend for Kevin and what the plan will be. On October 4 we have an all day evaluation at the hospital. We will meet with physical and occupational therapy in the morning. Sneak in a communication therapy session with the iPad before lunch. Have lunch at the hospital. After lunch we meet with a psychologist. This is also the day of his dance class later in the afternoon. I'm not sure if we will be staying for that or not. On October 18, we meet with the whole spasticity team: physiatrist, orthopedic, physical therapist, occupational therapist, psychologist, etc to find out what they recommend.
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