Zach really loved the part when Santa is sliding down the tinsel on a candy cane and is about to smack into the ornament. Made him belly laugh and stim at the same time.
Santa Taking The A Train
Saturday, December 12, 2009
Besides feeling sorry for myself, what have I been doing?
OK - so I am a whiny, annoying person and I rant a lot on this blog. I do hope that most people realize that the purpose of this blog is not single. One of the things I have as a top priority for this blog is an honest record of our journey for Zach. Whininess comes along with that territory for us. Why? I am just not that nice of a person, nor am I that accepting of the unfairness in life. I know people who are - and I am in awe of them. I don't believe that I am the most selfish person, as my previous (self) admonishments might infer.
When I say I am not that nice, I see the other side of this, I try to be a straight talker. I am not one to sugar coat my feelings, despite my mother's constant pleas that "you catch more flies with honey than vinegar". Personally, I find this idiom disgusting. I don't want to catch dirty, poo loving flies. After years of trying to be polite and using flattery to get my way, I found myself more often than not a meek little mouse, who was largely ignored or a volatile wreck who would blow volcanically. In other words, it wasn't in my nature, and it didn't work. If I am nothing else, I am a sincere person. If I give you a compliment, you never had to second guess my intentions, because I truly mean it. I tend to keep my mouth shut more often than not when it comes to really speaking my mind, because I am not always the most diplomatic person, and I know that. That doesn't stop me from putting my enormous size 9.5 in my mouth more often than I like, however. I have to accept who I am, and take the good with the bad, just like everyone else. My goal in this acceptance: I just try to keep that savings account positive where I am doing more good than bad, and hopefully no use of credit.
Speaking of people who are exceptionally nice, I had a recent opportunity to speak with another mother for a group of therapists here in Syracuse. The topic? What to do when you suspect autism in a child. She is the mother of 5 boys, 3 of who are on the spectrum, one has similar issues to Sophie's and there youngest is young enough that they are waiting to see what will be. When I was asked to come in and talk, I never imagined to have so many people in one room. It made me shake a bit, especially after getting their late since the back passenger door in the minivan didn't want to close so I ended up taking Mom's car.
I told the therapists that I couldn't give them the phrase that they would use to speaking with therapists about giving the bad news, that they would have to discover what they felt comfortable with for themselves. Direct, concise, the facts. I told them that they should disclose that they were not able to diagnose, and to have on hand who to refer them to for the dx. I told them giving them names of organizations in the area such as FEAT or CNY ASA. There is nothing pleasant about this experience. You will cause tears. You may shatter dreams. But you will also get people started on a journey. And the earlier the better. I have talked to parents who were deferred by professionals (pediatricians, therapists, etc.) for YEARS. One of the biggest regrets is that they did not recognize what was going on sooner, and get the child the appropriate treatment. This ends up causing serious angst and regret.
One of my projects for next year is sort of on this topic. One of the things FEAT is trying to get going is a workshop for pediatricians on early screening (and ultimately dxing) and management of children on the spectrum. I still hear stories from parents where the pediatrician pooh-poohed their concerns about their child. "He is a boy, they talk later." "He is the second born, they talk later." "He is shy" "Let's wait and see..." Many phrases so consistently heard. So sad to hear. But why? Sometimes it is because of ignorance, or because the practitioner doesn't want to evoke fear, or sometimes it is because they don't want to bother. This workshop will hopefully address ALL of these issues - why it matters, early screening tools, a protocol to handle possible cases, the evidence of early treatment making a difference, how to insurance code these items, the resources available for these children. I am really excited to work on this - and if this gets just one or two pediatricians to pay more due diligence to this issue, I will feel it was not a waste of effort. The biggest issue for this workshop - marketing of course!
We have come up with a strategy of trying to associate a CME (Continuing Medical Education) credit with the workshop. This will give doctors credit towards their requirements for professional development. This is where the hard part has been - trying to get the credit associated with the class. We have the content, the presenters, and a few venues in mind, but we are in the process of trying to get Upstate to be our sponsor for the CME credit. Not as straightforward a process as I had hoped. We will get there though.
I am hoping as an outcome of preparing for this workshop, I can learn a little more about presenting families the topic of their child possibly being on the spectrum and how to provide support during this crisis period in their family life. Not all families are alike in how they will handle this, nor what they will want to do for treatment if any. I can only refer to our experience, and I know that the denial was not as strong as some other families go through. I am hoping the professionals who do this on an almost daily basis can provide some guidance to others, such as therapists, who are on the first line of defense, and sometimes are the first to notice that a child may be on the spectrum.
Eventually, I would like to see a process written up into the Early Intervention programs on how to handle these situations. Of course, with budgetary restrictions, they may want to avoid this topic, since handling autism treatment appropriately requires a huge time alottment of services, and this is a big $$ commitment. As short sighted as this may seem, they cannot see their budgets blow up right now in a time of fiscal crisis. It could actually do damage to the program in its entirety.
The other thing I am trying to offer my expertise, OK well, not really, but at least my guidance on is the updating of the website for FEAT of CNY. There is a master programmer already involved, so I just have to butt in and tell my opinion. Finally, something I am good at. We are in the process of overhauling the whole website - to include a new Donation button.
Of course, no discussion of what I am working on would be complete without the never ending mention of New York state insurance reform. 16 states have insurance reform laws - one just added this week. It's good to live in Ohio (added December 8th.)
On October 23rd, 2009, a public hearing on Autism Spectrum Disorder was held in Albany. The New York State Senate Committees on Insurance, Health, and Mental Health & Developmental Disabilities held the hearing on the role of health insurance in the treatment of autism spectrum disorders. In my free time (maniacal laughter in background), I have been watching snippets of the hours of hours of testimony. The hearing was heartbreaking in some ways. One insurance representative referred to those stakeholders of coverage as "players". SLAP Can you imagine having your child's future referred in reference to a game? Players. I was revolted. While I am sure that this woman had no intention to hurt anyone's feelings, it is very evident that she has no idea or care of what we or any other family is going through. Her care is about the bottom line.
It is so obvious what needs to be done. There is a huge public financial burden currently, paying for required services for adults with this disorder. Not only does it make sense, but there are now peer reviewed research to indicate that we can lessen the symptoms of this disorder if treated correctly, making these individuals more independent, and less expensive in the long run.
As a few of you know, I have contacted my local representatives on this issue, and I continue to urge others to do the same. Do you realize that no only is the treatment not covered - the diagnosis is not covered! Currently the US Senate is working on that one. I am hoping to meet with local representatives to discuss this issue. I urge all of you to please help me stay on our state legislators about this. I will let you know what you can do and who to contact if you are interested in helping. By all means, feel free to contact your own states representatives about the federal mandates as well.
My recommendation for insurance reform: get rid of Viagara coverage and take the savings to cover autism treatment, add to that a tax on delivery of those children born to men over the age of 40- this especially makes sense since research now shows a correlation between the age of a man and higher rates of autism. Problem solved.
And the final project of mine is of course, is getting those therapeutic hose on Mom's dear legs.
When I say I am not that nice, I see the other side of this, I try to be a straight talker. I am not one to sugar coat my feelings, despite my mother's constant pleas that "you catch more flies with honey than vinegar". Personally, I find this idiom disgusting. I don't want to catch dirty, poo loving flies. After years of trying to be polite and using flattery to get my way, I found myself more often than not a meek little mouse, who was largely ignored or a volatile wreck who would blow volcanically. In other words, it wasn't in my nature, and it didn't work. If I am nothing else, I am a sincere person. If I give you a compliment, you never had to second guess my intentions, because I truly mean it. I tend to keep my mouth shut more often than not when it comes to really speaking my mind, because I am not always the most diplomatic person, and I know that. That doesn't stop me from putting my enormous size 9.5 in my mouth more often than I like, however. I have to accept who I am, and take the good with the bad, just like everyone else. My goal in this acceptance: I just try to keep that savings account positive where I am doing more good than bad, and hopefully no use of credit.
Speaking of people who are exceptionally nice, I had a recent opportunity to speak with another mother for a group of therapists here in Syracuse. The topic? What to do when you suspect autism in a child. She is the mother of 5 boys, 3 of who are on the spectrum, one has similar issues to Sophie's and there youngest is young enough that they are waiting to see what will be. When I was asked to come in and talk, I never imagined to have so many people in one room. It made me shake a bit, especially after getting their late since the back passenger door in the minivan didn't want to close so I ended up taking Mom's car.
I told the therapists that I couldn't give them the phrase that they would use to speaking with therapists about giving the bad news, that they would have to discover what they felt comfortable with for themselves. Direct, concise, the facts. I told them that they should disclose that they were not able to diagnose, and to have on hand who to refer them to for the dx. I told them giving them names of organizations in the area such as FEAT or CNY ASA. There is nothing pleasant about this experience. You will cause tears. You may shatter dreams. But you will also get people started on a journey. And the earlier the better. I have talked to parents who were deferred by professionals (pediatricians, therapists, etc.) for YEARS. One of the biggest regrets is that they did not recognize what was going on sooner, and get the child the appropriate treatment. This ends up causing serious angst and regret.
One of my projects for next year is sort of on this topic. One of the things FEAT is trying to get going is a workshop for pediatricians on early screening (and ultimately dxing) and management of children on the spectrum. I still hear stories from parents where the pediatrician pooh-poohed their concerns about their child. "He is a boy, they talk later." "He is the second born, they talk later." "He is shy" "Let's wait and see..." Many phrases so consistently heard. So sad to hear. But why? Sometimes it is because of ignorance, or because the practitioner doesn't want to evoke fear, or sometimes it is because they don't want to bother. This workshop will hopefully address ALL of these issues - why it matters, early screening tools, a protocol to handle possible cases, the evidence of early treatment making a difference, how to insurance code these items, the resources available for these children. I am really excited to work on this - and if this gets just one or two pediatricians to pay more due diligence to this issue, I will feel it was not a waste of effort. The biggest issue for this workshop - marketing of course!
We have come up with a strategy of trying to associate a CME (Continuing Medical Education) credit with the workshop. This will give doctors credit towards their requirements for professional development. This is where the hard part has been - trying to get the credit associated with the class. We have the content, the presenters, and a few venues in mind, but we are in the process of trying to get Upstate to be our sponsor for the CME credit. Not as straightforward a process as I had hoped. We will get there though.
I am hoping as an outcome of preparing for this workshop, I can learn a little more about presenting families the topic of their child possibly being on the spectrum and how to provide support during this crisis period in their family life. Not all families are alike in how they will handle this, nor what they will want to do for treatment if any. I can only refer to our experience, and I know that the denial was not as strong as some other families go through. I am hoping the professionals who do this on an almost daily basis can provide some guidance to others, such as therapists, who are on the first line of defense, and sometimes are the first to notice that a child may be on the spectrum.
Eventually, I would like to see a process written up into the Early Intervention programs on how to handle these situations. Of course, with budgetary restrictions, they may want to avoid this topic, since handling autism treatment appropriately requires a huge time alottment of services, and this is a big $$ commitment. As short sighted as this may seem, they cannot see their budgets blow up right now in a time of fiscal crisis. It could actually do damage to the program in its entirety.
The other thing I am trying to offer my expertise, OK well, not really, but at least my guidance on is the updating of the website for FEAT of CNY. There is a master programmer already involved, so I just have to butt in and tell my opinion. Finally, something I am good at. We are in the process of overhauling the whole website - to include a new Donation button
Of course, no discussion of what I am working on would be complete without the never ending mention of New York state insurance reform. 16 states have insurance reform laws - one just added this week. It's good to live in Ohio (added December 8th.)
On October 23rd, 2009, a public hearing on Autism Spectrum Disorder was held in Albany. The New York State Senate Committees on Insurance, Health, and Mental Health & Developmental Disabilities held the hearing on the role of health insurance in the treatment of autism spectrum disorders. In my free time (maniacal laughter in background), I have been watching snippets of the hours of hours of testimony. The hearing was heartbreaking in some ways. One insurance representative referred to those stakeholders of coverage as "players". SLAP Can you imagine having your child's future referred in reference to a game? Players. I was revolted. While I am sure that this woman had no intention to hurt anyone's feelings, it is very evident that she has no idea or care of what we or any other family is going through. Her care is about the bottom line.
It is so obvious what needs to be done. There is a huge public financial burden currently, paying for required services for adults with this disorder. Not only does it make sense, but there are now peer reviewed research to indicate that we can lessen the symptoms of this disorder if treated correctly, making these individuals more independent, and less expensive in the long run.
As a few of you know, I have contacted my local representatives on this issue, and I continue to urge others to do the same. Do you realize that no only is the treatment not covered - the diagnosis is not covered! Currently the US Senate is working on that one. I am hoping to meet with local representatives to discuss this issue. I urge all of you to please help me stay on our state legislators about this. I will let you know what you can do and who to contact if you are interested in helping. By all means, feel free to contact your own states representatives about the federal mandates as well.
My recommendation for insurance reform: get rid of Viagara coverage and take the savings to cover autism treatment, add to that a tax on delivery of those children born to men over the age of 40- this especially makes sense since research now shows a correlation between the age of a man and higher rates of autism. Problem solved.
And the final project of mine is of course, is getting those therapeutic hose on Mom's dear legs.
Friday, December 11, 2009
New Doctor to the Central New York Area
Calling all parents/caretakers/teachers/therapists/etc. to children who have behavioral issues with their child (autism/ADHD/whatever...):
A new clinic is now open at the Upstate: the Family Behavior Analysis Clinic headed by Dr. Henry Roane.
Dr. Roane presented some of his research to us, and it was very compelling. There was an overview of how the clinic runs, and he presented video of some of his work at his previous clinics. It appears that they first work with the family to get a description of the problem behaviors. They then bring the child into the clinic and attempt to bring out the behaviors using various possible antecedents. They have customized software that one of the clinicians uses to track various variables, such as the occurrences of problem behaviors, and other observables. The session is videorecodred. They analyze the data and then attempt a treatment plan. Their goal is to lessen the problem behaviors by 80% for each child - and according to the information he presented, he has been able to achieve that rate (and usually even better) for a majority of his patients. (I want to say 90% of his patients, but I am attempting to recall the presentation from memory and could be wrong.) Once the treatment plan has been tested for efficacy, it can then be documented for use in IEPs. The nice part of the program is that they teach family members how to use the techniques and give them the guidance they need to follow through.
Dr. Roane and his wife, also a clinician, have worked with some really tough cases. They provided pictures of patients who were self-injurious to the point of hospitalization (tantalizing to watch around lunchtime, eh?). One child had gouged his arm continually and the scars resembled that of a burn victim with grafting, another tore her retina (to the point of almost blindness), another client had pica and swallowed everything - he showed an X-ray in which the child had swallowed a safety pin that was closed, but opened while in the throat. These cases are so troubling for these families - and frequently insurance companies refuse coverage citing that it is not a medical condition. Dr. Roane has experience with handling insurance companies and school districts. In other words, he doesn't leave these families hanging with just a report and some ideas on how to manage. He appears to offer them the support they need beyond the treatment plan, with training, and help in resolving issues with IEP's and insurance companies. I do hope his work is as good as presented.
I cannot personally or anecdotally recommend him, but he seems to come with a very good reputation and good credentials. Hank had an aunt who was severely retarded and had self injurious behavior. His interest in the field began in college when taking a psychology course where they addressed such issues. I find that when people have a personal connection to an interest, they are just that much smarter and motivated about the issue.
The clinic officially opens in January, and they have begun a patient list already. For referrals please contact Kelly Martini at (315-464-3145). I am hoping this clinic can give hope to those parents who are struggling with issues with their babies. BTW - they handle ages 2-21.
A new clinic is now open at the Upstate: the Family Behavior Analysis Clinic headed by Dr. Henry Roane.
Dr. Roane received his Ph.D. in 2000 from Louisiana State University in Psychology with an emphasis on the assessment and treatment of behavior disorders in individuals with developmental disabilities. He completed a pre-doctoral internship in pediatrics and psychology at the Kennedy Krieger Institute and the Johns Hopkins University School of Medicine.I had the chance to meet him and his wife, Heather, last week at a meet and greet luncheon sponsored by FEAT. His wife, also a part of the clinic, specializes in feeding issues. Dr. Roane does not refer to himself as an autism expert, but as a problem behavior specialist. His particular interest includes severe behaviors, in particular, self injury.
Dr. Roane presented some of his research to us, and it was very compelling. There was an overview of how the clinic runs, and he presented video of some of his work at his previous clinics. It appears that they first work with the family to get a description of the problem behaviors. They then bring the child into the clinic and attempt to bring out the behaviors using various possible antecedents. They have customized software that one of the clinicians uses to track various variables, such as the occurrences of problem behaviors, and other observables. The session is videorecodred. They analyze the data and then attempt a treatment plan. Their goal is to lessen the problem behaviors by 80% for each child - and according to the information he presented, he has been able to achieve that rate (and usually even better) for a majority of his patients. (I want to say 90% of his patients, but I am attempting to recall the presentation from memory and could be wrong.) Once the treatment plan has been tested for efficacy, it can then be documented for use in IEPs. The nice part of the program is that they teach family members how to use the techniques and give them the guidance they need to follow through.
Dr. Roane and his wife, also a clinician, have worked with some really tough cases. They provided pictures of patients who were self-injurious to the point of hospitalization (tantalizing to watch around lunchtime, eh?). One child had gouged his arm continually and the scars resembled that of a burn victim with grafting, another tore her retina (to the point of almost blindness), another client had pica and swallowed everything - he showed an X-ray in which the child had swallowed a safety pin that was closed, but opened while in the throat. These cases are so troubling for these families - and frequently insurance companies refuse coverage citing that it is not a medical condition. Dr. Roane has experience with handling insurance companies and school districts. In other words, he doesn't leave these families hanging with just a report and some ideas on how to manage. He appears to offer them the support they need beyond the treatment plan, with training, and help in resolving issues with IEP's and insurance companies. I do hope his work is as good as presented.
I cannot personally or anecdotally recommend him, but he seems to come with a very good reputation and good credentials. Hank had an aunt who was severely retarded and had self injurious behavior. His interest in the field began in college when taking a psychology course where they addressed such issues. I find that when people have a personal connection to an interest, they are just that much smarter and motivated about the issue.
The clinic officially opens in January, and they have begun a patient list already. For referrals please contact Kelly Martini at (315-464-3145). I am hoping this clinic can give hope to those parents who are struggling with issues with their babies. BTW - they handle ages 2-21.
Wednesday, December 9, 2009
Software
Last night I had the doctor next store come over and give the kids' lungs a listen. The cough they had sounds like it is getting worse, and I was nervous that it could be bronchitis, or something worse. he said they sound clear. That makes me feel better.
So, Zach put his mouth on my finger last evening, again, not out of anger. I was anticipating a bite, and he looked me in the eye, and then gave me a kiss. It was as if he had the urge to do it, and stopped himself. Phew.
With Zach getting some computer skills (more than Sophia had at this age I might add), we are now looking into software packages that could help him attain or bring out some of his skills. Zach grossly under-performs for people when in typical learning settings, but when given motivation, he can perform a lot more. Finding motivators for Zach has been difficult. What has been interesting to him one day, may not be the next. We run constant preference assessments on him to see what gets him going. Is it a toy? A video? A food item? A tickle? A bounce on the trampoline?
In the beginning, the therapists started with solely edibles, and in particular, candy to get him going. Zach did not care much about social praise at the time - remember this is a kid that would look right through you as if you didn't exist. The therapists carefully paired social praise with the edibles until the social praise was associated with something positive for Zach, and they were able to fade out the edibles. This is part of the design of ABA.
After edibles, videos came next for Zach. He would even request "mooeee" for "movie". Once he could say movie spontaneously, they actually had him qualify which movie: "Blues Clues"? "Thomas?", "Dora?". He did it. Of course, this was a skill he had at the peak of his summer sessions when he was receiving 35-40 hours of intense therapy a week. Hopefully, we will get there again.
Anyhow, one therapist that Zach really took to was Ali. We privately hired her for the summer to work with Zach, and she would do "her work" with Zach (usually running the discrete trials and programs the lead therapist would leave for her) and then she would end the session on a positive note by going into his bedroom and turning on the computer and playing with him on the computer. Did I happen to mention he mastered more programs during this time period when she was around than at any other time? While we could give all the credit to Ali, I feel like I should have picked up on the fact that she was smart enough to realize the reinforcing quality of that computer. The other therapists didn't quite have the knack of using the computer that Ali did so it was not continued to the extent it was used when she was here.
Light bulb moment recently. So Steve and I were actually considering whipping out some software that would be a game/skill builder and design it to match the skills he has and ones we would like to work on. It is so nice having a master programmer for a husband - and yes, he is probably one of the best programmers out there. Being a geek, I can tell you it was one of the things that attracted me to him. (BTW - he's not just good, he's Google-good - yes, Google contemplated him for a position, but Steve backed out once he saw the cost of living in the areas we would have to move to.)
Ahh, but wouldn't you know, there are already packages out there for kids on the spectrum. A few of them even have an ABA approach! This, of course, makes sense to me, since ABA is methodological and scientific in its approach.
So now we have to choose which program we think we will go with. They are not cheap, so I don't want to just throw money away.
There's Fast For Word at $1300. ( YIKES!)
Discrete Trail Trainer Bundle at $150, a little easier to swallow.
Teachtown, $10 up front, and $40 a month.
These packages in particular are interesting, because they track progress and actually even have an intelligent feature that automatically scales the levels of actitivies and type of activities to the levels the child demonstrates. The other thing I like about this software, versus traditional typical learning software, is that incorrect answers are not rewarded only correct answers. One of Zach's current games will allow you to hit buttons that are non-functional relative to the goal of the game he is playing, but still do something goofy, like make a funny noise or face on a character, which is a reward for him. Sometimes he will play with these little Easter eggs rather than the game, which makes the game last a little longer with nothing gained. In other words, it wastes time.
One thing I have read that I need to be acutely aware of is that we need to limit the time on the computer. There are a lot of children on the spectrum who become addicted to it, and won't leave the computer, when asked to (OK let's be real here, when forced to.) Some children will actually become combative. So glad I could talk to and read some of the veterans experiences before going down this journey - hopefully I will avoid a few land mines now. Some of this software has built in timers to help you with this. I am also looking to see if there is a built in timer function we can add to our computer generically to do the same thing - Sophia could use it, and let's face it, so could I! Once in awhile, I just can't seem to get off facebook. :)
There is a plethora of gaming software out there. Still need to go through it some more and talk to teachers, therapists, and other parents on their opinions of it. If anyone has used something- I would love to learn what you think - so send your comments in!
So, Zach put his mouth on my finger last evening, again, not out of anger. I was anticipating a bite, and he looked me in the eye, and then gave me a kiss. It was as if he had the urge to do it, and stopped himself. Phew.
With Zach getting some computer skills (more than Sophia had at this age I might add), we are now looking into software packages that could help him attain or bring out some of his skills. Zach grossly under-performs for people when in typical learning settings, but when given motivation, he can perform a lot more. Finding motivators for Zach has been difficult. What has been interesting to him one day, may not be the next. We run constant preference assessments on him to see what gets him going. Is it a toy? A video? A food item? A tickle? A bounce on the trampoline?
In the beginning, the therapists started with solely edibles, and in particular, candy to get him going. Zach did not care much about social praise at the time - remember this is a kid that would look right through you as if you didn't exist. The therapists carefully paired social praise with the edibles until the social praise was associated with something positive for Zach, and they were able to fade out the edibles. This is part of the design of ABA.
After edibles, videos came next for Zach. He would even request "mooeee" for "movie". Once he could say movie spontaneously, they actually had him qualify which movie: "Blues Clues"? "Thomas?", "Dora?". He did it. Of course, this was a skill he had at the peak of his summer sessions when he was receiving 35-40 hours of intense therapy a week. Hopefully, we will get there again.
Anyhow, one therapist that Zach really took to was Ali. We privately hired her for the summer to work with Zach, and she would do "her work" with Zach (usually running the discrete trials and programs the lead therapist would leave for her) and then she would end the session on a positive note by going into his bedroom and turning on the computer and playing with him on the computer. Did I happen to mention he mastered more programs during this time period when she was around than at any other time? While we could give all the credit to Ali, I feel like I should have picked up on the fact that she was smart enough to realize the reinforcing quality of that computer. The other therapists didn't quite have the knack of using the computer that Ali did so it was not continued to the extent it was used when she was here.
Light bulb moment recently. So Steve and I were actually considering whipping out some software that would be a game/skill builder and design it to match the skills he has and ones we would like to work on. It is so nice having a master programmer for a husband - and yes, he is probably one of the best programmers out there. Being a geek, I can tell you it was one of the things that attracted me to him. (BTW - he's not just good, he's Google-good - yes, Google contemplated him for a position, but Steve backed out once he saw the cost of living in the areas we would have to move to.)
Ahh, but wouldn't you know, there are already packages out there for kids on the spectrum. A few of them even have an ABA approach! This, of course, makes sense to me, since ABA is methodological and scientific in its approach.
So now we have to choose which program we think we will go with. They are not cheap, so I don't want to just throw money away.
There's Fast For Word at $1300. ( YIKES!)
Discrete Trail Trainer Bundle at $150, a little easier to swallow.
Teachtown, $10 up front, and $40 a month.
These packages in particular are interesting, because they track progress and actually even have an intelligent feature that automatically scales the levels of actitivies and type of activities to the levels the child demonstrates. The other thing I like about this software, versus traditional typical learning software, is that incorrect answers are not rewarded only correct answers. One of Zach's current games will allow you to hit buttons that are non-functional relative to the goal of the game he is playing, but still do something goofy, like make a funny noise or face on a character, which is a reward for him. Sometimes he will play with these little Easter eggs rather than the game, which makes the game last a little longer with nothing gained. In other words, it wastes time.
One thing I have read that I need to be acutely aware of is that we need to limit the time on the computer. There are a lot of children on the spectrum who become addicted to it, and won't leave the computer, when asked to (OK let's be real here, when forced to.) Some children will actually become combative. So glad I could talk to and read some of the veterans experiences before going down this journey - hopefully I will avoid a few land mines now. Some of this software has built in timers to help you with this. I am also looking to see if there is a built in timer function we can add to our computer generically to do the same thing - Sophia could use it, and let's face it, so could I! Once in awhile, I just can't seem to get off facebook. :)
There is a plethora of gaming software out there. Still need to go through it some more and talk to teachers, therapists, and other parents on their opinions of it. If anyone has used something- I would love to learn what you think - so send your comments in!
Monday, December 7, 2009
uugghh
He couldn't just let me have a good day now, could he?
Zach bit me tonight. Twice. Only me. He wasn't mad. He was acting spazzy; running around, jumping, jumping on me, kissing me, and then whammo he tagged me. Later on, was just about the same thing, he was running around, jumped on me, pulled my hair, and went for it.
Oh please please please please may this not be a new behavior. And please please please, may he not do this to anyone else!
Zach bit me tonight. Twice. Only me. He wasn't mad. He was acting spazzy; running around, jumping, jumping on me, kissing me, and then whammo he tagged me. Later on, was just about the same thing, he was running around, jumped on me, pulled my hair, and went for it.
Oh please please please please may this not be a new behavior. And please please please, may he not do this to anyone else!
Sunday, December 6, 2009
Mouse Leg Balloon
Hot off the press:
Zach has learned to move a mouse independently. I am still in shock. He still has to learn how to fine tune his movements, but he definitely gets it and that is step one. The game he was using doesn't require him to click, so that will be the next step. He still has more fine tuning when it comes to how much to move the mouse around, however, he is proficient enough to play this particular game independently ~85% of the time. Lesson learned: when motivated, he will learn.
Verbally, we noticed he is spontaneously saying words more frequently. His old words of banana and apple are most obvious, although he referred to an orange as an apple which I had to correct. Problem is - orange is a hard word for him to say. It will come in time I am sure. He has also said cracker, chip, ting, milk, juice, bubble, ball, tickle, spontaneously although when referring to an object, is was usually within sight or sometimes visually prompted by holding the object before him to make a choice. But not always. A few evenings ago, while he was sitting near me, he said "leg" and gestured for me to rub his leg. Last night, we were at Wegmans and they gave us balloons. Before we said anything, Zach said "aboon" without any other prompt. What is particularly interesting is the leg and balloon are not things we are working on, they again were just highly motivating.
As for his school program, good things happening there, although I feel that in some areas he is doing less for them than he can do at home. His OT reported that he needed help completing puzzles and simple shape sorters - and we were really surprised by this. He was given one shape sorter with about a dozen different shapes last Christmas, he had it figured out on hiw own within 3 days. But then again, the PT wrote that he had ridden his tricycle independently across level pavement for ~ 20 feet, and we haven't seen that at home!
We were able to get candy canes that are GFCF, no artificial dyes, and organic. At $3.25 a box - I have to shudder a bit, but they are one of his favorite food items right now, and I am thrilled that I could find them at all! A highly motivating item that will be sent to his school. Let us see if that creates any results.
But right n0w, all I can say is something is going down with this little boy, and it looks good.
Zach has learned to move a mouse independently. I am still in shock. He still has to learn how to fine tune his movements, but he definitely gets it and that is step one. The game he was using doesn't require him to click, so that will be the next step. He still has more fine tuning when it comes to how much to move the mouse around, however, he is proficient enough to play this particular game independently ~85% of the time. Lesson learned: when motivated, he will learn.
Verbally, we noticed he is spontaneously saying words more frequently. His old words of banana and apple are most obvious, although he referred to an orange as an apple which I had to correct. Problem is - orange is a hard word for him to say. It will come in time I am sure. He has also said cracker, chip, ting, milk, juice, bubble, ball, tickle, spontaneously although when referring to an object, is was usually within sight or sometimes visually prompted by holding the object before him to make a choice. But not always. A few evenings ago, while he was sitting near me, he said "leg" and gestured for me to rub his leg. Last night, we were at Wegmans and they gave us balloons. Before we said anything, Zach said "aboon" without any other prompt. What is particularly interesting is the leg and balloon are not things we are working on, they again were just highly motivating.
As for his school program, good things happening there, although I feel that in some areas he is doing less for them than he can do at home. His OT reported that he needed help completing puzzles and simple shape sorters - and we were really surprised by this. He was given one shape sorter with about a dozen different shapes last Christmas, he had it figured out on hiw own within 3 days. But then again, the PT wrote that he had ridden his tricycle independently across level pavement for ~ 20 feet, and we haven't seen that at home!
We were able to get candy canes that are GFCF, no artificial dyes, and organic. At $3.25 a box - I have to shudder a bit, but they are one of his favorite food items right now, and I am thrilled that I could find them at all! A highly motivating item that will be sent to his school. Let us see if that creates any results.
But right n0w, all I can say is something is going down with this little boy, and it looks good.
Wednesday, December 2, 2009
Never Give Up
I found this tonight amongst a bunch of scrap paper that Sophia had scribbled on. Sophia never used to like to color. Never used to like to draw. She avoided it at all costs and became irritated when anyone tried to help her - teachers, therapists, sitters, but mostly me. Writing was the thing we noticed that she was so behind in that led us to her evaluation, and then we really learned a lot about what was going on with her. She has had therapy 2x a week since September of 2008, she had preschool where teachers worked with her, we hired an OT major to work with her for 10 hours a week this past summer, and still, she struggled to trace the letters in her name, let alone independently draw them. One day a few weeks ago, I gave Sophie an old notepad, half used. And then there it was. Something clicked. She drew things on every page and then came and asked me for another notepad. She all the sudden had a voracious appetite for sketching. She brings notepads in the car with her and sits at the kitchen table, drawing, sketching, writing. When I saw this piece above, unsolicited, a piece of scrap paper with all 26 letters in order on it, some correct, some not so much; my heart filled with joy. It has come to her. Was it the therapy? Was it a teacher? Was it her time? Yes. Lately I have become concerned that Zach may have a cognitive disability. A close relative insinuated recently that it was wishful thinking on my part that I don't believe that Zach has cognitive challenges. Mind you, I love him so much, and no matter what label anyone sticks to him, I will never love him less. I asked a therapist to comment, and she quickly diverted the conversation. I am sure it is an uncomfortable topic. I am not sure if she did this on purpose or not. But I began to question this more. This unknowing seems to take the wind out of my sails. Then there was tonight. I was hastily cleaning up, found the pile of scrap paper with scribbles, with the alphabet hidden in the middle. I was just about to dump the whole pile of scribbled scrap in to the recycling bin, when something made me stop and look through it. I had begun to think after all we have done with Sophia that nothing would ever get her to write. I remember thanking God for the keyboard, knowing how proficient she was becoming using it to play games. And voila. Last week Zach uttered a decent number of words spontaneously that we have never heard him say before .... and haven't heard since. Zach does not understand the concept of exchanging ideas or thoughts, but that doesn't mean he doesn't think. He doesn't say much, but that doesn't mean he is not understanding the information being presented to him. Sometimes all this therapy doesn't feel like it is doing much because of my perception which might not be reality. It's easy to feel like it might not be worth it. I am glad I have Sophia as a reference. She is writing! More importantly, she is trying to write. I often wondered if the reason she wouldn't even try was out of fear, knowing that it was so difficult for her. Could this translate to Zach? I think so. I am glad that the Big Guy upstairs sent me this little wake up call to see that indeed, all things are possible. I just need to keep my eyes and ears open. Oh yeah... and never give up. And I will gladly accept scrap paper or notepads if anyone wants to make a donation. We are beginning to run short!
Subscribe to:
Posts (Atom)