I'm afraid I've not been the best blogger for the past few months. I haven't had anything specific to write about Joseph's progress, and we had a new babynlast month (six weeks early). Things are starting to get back to normal though.
First, Joseph has continued to make great progress with his expressive language. At this point, he's even requesting things verbally. Apparently, he and mommy ran into one of his classroom aides, Joseph said hello to her and told her about the new baby. We've been working for a while on this home ABA program, with mixed success. It was going very well at the beginning, but now it's pretty rough. We're trying to figure out how to make it work better. Joseph was approved for SSDI and soon he should have Medicaid, then we can get the third ABA aide paid for and we can get a more formal program with a doctor from Children's Hospital in charge.
Joseph's two new obsessions are, Star Wars (particularly the Clone Wars cartoon) and the new Thundercats series. It would be worse, he's thankfully not shown interest in Thomas the Tank Engine. :)
Yesterday we got a surprise phone call from Joseph's school district. They said they just got funding for a new program in the district that they thought Joseph would do well in. It's a class based on the TEACCH method, which I'd never heard of.
From what I understand (and I encourage any readers with more information to comment) TEACCH is a teaching method designed for students with autism, that focuses on the student's strengths and interests. This class would have more one on one work, and have 8 students, half of which would be typically developing peer models. I've been told that it's very effective for students that need structure, and Joseph desperately needs structure right now.
There were two reasons that Kristy and I decided against sending him to one of the many autism centers. First, we felt that typically developing peer models are important, particularly right now. Second, we really like Joseph's teacher, and he really likes her too. We asked the school to have her call us to tell us what she thought about this new program. Kristy spoke with her today, and she said she was conflicted because she loves Joseph so much that she doesnt want to give him up, but that she does actually think that is new class would be better for him than the more general special ed class.
So Joseph's old teacher is going to go with us to meet the new teacher, and if everything goes well he will be in this new program this year. At the end of the school year, we have to decide if he is ready for kindergarten or if he should stay in preschool for another year. Based on the tremendous progress he's made since his diagnosis almost a year ago, I'm optimistic that his language and behavior will be developed enough for the mainstream kindergarten classroom.
Friday, August 5, 2011
Friday, May 27, 2011
Final Progress Report for the School Year
We got Joseph's final progress report for the year yesterday. He did very well in some areas, mastering several new skills. The least progress was in the speech section though, which I consider the most important right now.
It's discouraging. Though when he started school, he barely spoke at all, he's not improved as much as was expected.
One good piece of news though: Dublin doesn't have "special ed" classrooms. Their special ed program is inclusive. So when Joseph goes into Kindergarten, he'll be in a typical classroom with whatever supports we (his parents and his IEP team) decide are necessary for him to be successful (probably an aide). This is a big departure from my own experiences 20 years ago, when I was basically warehoused in a special ed classroom except for "specials," gym, music and art, until half-way through middle school.
Not much to say about his IEP. It's stuff like "Will greet and close with prompting 4/5 times" and stuff like that.
We don't know when the EIBI program through Children's will get rolling. We're going to try to put together something for the interim, especially since summer break just started.
Two new things we're going to be trying this summer, Therapeutic Listening and ADHD meds. We're still trying to find the right meds for Maria and we were going to wait until we got it worked out with her first, but Joseph's lack of concentration really is holding him back so we're going to talk to the pediatrician about trying some different stuff and we'll see how it helps him. When more than half of his 30 minute speech therapy appointment is spent struggling with him, trying to coax him into cooperating, it's difficult to make progress.
I've been skeptical about Therapeutic Listening, but I've heard good things about it from other parents so we're going to give it a shot when Joseph starts his next OT session in a few weeks. One thing I'm pretty sure about though, I don't believe that it's necessary to use their "special" equipment. If another set of headphones can deliver the same frequency range, I don't see why they wouldn't work. Anyway, it won't cost anything to try it out initially so it's worth a shot. I expect that if it works, it will work fine on an iPod too.
So we charge optimistically into summer. We'll do what we can and see what progress we can make with Joseph at home to better prepare him for the next school year. I haven't been posting much because I haven't felt there was anything to post about. Hopefully, the new season and new efforts will bring new things for me to write about. Keep praying for us. :)
It's discouraging. Though when he started school, he barely spoke at all, he's not improved as much as was expected.
One good piece of news though: Dublin doesn't have "special ed" classrooms. Their special ed program is inclusive. So when Joseph goes into Kindergarten, he'll be in a typical classroom with whatever supports we (his parents and his IEP team) decide are necessary for him to be successful (probably an aide). This is a big departure from my own experiences 20 years ago, when I was basically warehoused in a special ed classroom except for "specials," gym, music and art, until half-way through middle school.
Not much to say about his IEP. It's stuff like "Will greet and close with prompting 4/5 times" and stuff like that.
We don't know when the EIBI program through Children's will get rolling. We're going to try to put together something for the interim, especially since summer break just started.
Two new things we're going to be trying this summer, Therapeutic Listening and ADHD meds. We're still trying to find the right meds for Maria and we were going to wait until we got it worked out with her first, but Joseph's lack of concentration really is holding him back so we're going to talk to the pediatrician about trying some different stuff and we'll see how it helps him. When more than half of his 30 minute speech therapy appointment is spent struggling with him, trying to coax him into cooperating, it's difficult to make progress.
I've been skeptical about Therapeutic Listening, but I've heard good things about it from other parents so we're going to give it a shot when Joseph starts his next OT session in a few weeks. One thing I'm pretty sure about though, I don't believe that it's necessary to use their "special" equipment. If another set of headphones can deliver the same frequency range, I don't see why they wouldn't work. Anyway, it won't cost anything to try it out initially so it's worth a shot. I expect that if it works, it will work fine on an iPod too.
So we charge optimistically into summer. We'll do what we can and see what progress we can make with Joseph at home to better prepare him for the next school year. I haven't been posting much because I haven't felt there was anything to post about. Hopefully, the new season and new efforts will bring new things for me to write about. Keep praying for us. :)
Tuesday, May 10, 2011
Updates
It's been almost a month since I've updated so I'm going to try to piece together enough cohesive thought to merit a new entry.
I'm undecided about the Adderall's effect on Maria. We had the initial dosage of 5mg increased to 10mg. She's still having the same trouble at school though, and if anything she's gotten more mouthy at home.
I got a new doctor that takes our new insurance. I told her that the citalopram isn't working as well as it had been, so she put me on Abilify too. That made me exhausted all the time, so she switched it to Welbutrin.
We've been working to get Joseph's ABA program set up. In fact, Kristy and Celia go to their first aide training session tonight. We're having trouble with the funding though. As I previously mentioned, we had planned to use a Medicaid funded program, Healthchek to pay our aides as home health aides. Unfortunately, because Joseph has Caresource instead of the Medicaid that people on disability have, this is causing a problem. Caresource can (and apparently usually does) refuse requests for HHA's for kids. We're applying for disability for Joseph (which we should have done months ago) and in the meantime we'll do what we can to get his program started.
His speech continues to develop, making noticeable progress every week. He's perfectly comfortable verbalizing choices, like cereal or oatmeal etc. He's even initiating appropriate speech sometimes. We're very excited and encouraged by this. But we're impatient and he can't learn fast enough to satisfy us. His mother and one of the aides at school think that he can actually read already. At the very least, he can recognize his classmates' written names.
His behavior seems to be getting worse at times though. In fact, I've got a big scabbed-over scratch on my nose that is very distracting to me, courtesy of a temper-tantrum. This afternoon, he was bouncing all over our bed and kept jumping on me. We rolled him up in a sheet, which he loved, and he sat still for the rest of the video he was watching. We'll have to experiment with this.
My father-in-law has accepted that Joseph is autistic. We visited over the weekend for his graduation, and I overheard him talking about Joseph's autism to several people, which was relieving. I don't exactly know why, but it was extremely frustrating for me to hear him denying Joseph's condition. I probably felt that if he didn't believe that Joseph's behavior was a result of autism, then it was my shortcomings as a parent.
That's it for now.
I'm undecided about the Adderall's effect on Maria. We had the initial dosage of 5mg increased to 10mg. She's still having the same trouble at school though, and if anything she's gotten more mouthy at home.
I got a new doctor that takes our new insurance. I told her that the citalopram isn't working as well as it had been, so she put me on Abilify too. That made me exhausted all the time, so she switched it to Welbutrin.
We've been working to get Joseph's ABA program set up. In fact, Kristy and Celia go to their first aide training session tonight. We're having trouble with the funding though. As I previously mentioned, we had planned to use a Medicaid funded program, Healthchek to pay our aides as home health aides. Unfortunately, because Joseph has Caresource instead of the Medicaid that people on disability have, this is causing a problem. Caresource can (and apparently usually does) refuse requests for HHA's for kids. We're applying for disability for Joseph (which we should have done months ago) and in the meantime we'll do what we can to get his program started.
His speech continues to develop, making noticeable progress every week. He's perfectly comfortable verbalizing choices, like cereal or oatmeal etc. He's even initiating appropriate speech sometimes. We're very excited and encouraged by this. But we're impatient and he can't learn fast enough to satisfy us. His mother and one of the aides at school think that he can actually read already. At the very least, he can recognize his classmates' written names.
His behavior seems to be getting worse at times though. In fact, I've got a big scabbed-over scratch on my nose that is very distracting to me, courtesy of a temper-tantrum. This afternoon, he was bouncing all over our bed and kept jumping on me. We rolled him up in a sheet, which he loved, and he sat still for the rest of the video he was watching. We'll have to experiment with this.
My father-in-law has accepted that Joseph is autistic. We visited over the weekend for his graduation, and I overheard him talking about Joseph's autism to several people, which was relieving. I don't exactly know why, but it was extremely frustrating for me to hear him denying Joseph's condition. I probably felt that if he didn't believe that Joseph's behavior was a result of autism, then it was my shortcomings as a parent.
That's it for now.
Friday, April 15, 2011
A Difficult Decision
I haven't updated in a while. It's mostly been more of the same. Joseph is doing well in school. He's making slow but certain progress. The iPad has been a tremendous boon. I'm going to be writing about how they're using the iPad in his classroom at school, but this will require some research to do it justice.
One new thing, that tangentially (at the moment) involves Joseph is his sister's ADHD diagnosis we received on Wednesday. It was expected, but what we didn't expect is how much Kristy and I have moved away from our insistence on trying non-medical interventions first. I've always been a big critic of prescribing medications to children to treat long-term psychiatric symptoms. But the psychologist who evaluated her said that therapy would not be helpful yet. And my kids have ADHD because I have ADHD, it's neurological, like my depression, which I spent years in denial about, which kept me from getting medicated. See the thought pattern here?
So we've decided to try medication for Maria to control her impulsive and oppositional behavior. If it doesn't work, we'll just stop. If it DOES work, then we'll know that the medication is what she needs to help her be successful in school and in life.
How this effects Joseph, if it works for Maria, we're going to try it with Joseph too. He's talking more and more, but we frequently can't understand him because he's talking so fast and the words run together. He won't stay focused on an activity that isn't of his choosing (which is also a symptom of ADHD) and with an unofficial diagnosis for his father, and an official diagnosis for his sister, I think it's safe to say we understand what the problem is. So we need to get him calmed down so we can make better, faster progress.
Kristy was previously even more set against meds, particularly stimulant meds. After Wednesday though, she was as ready as I was to put Maria on them. The behavior chart at school has been helping, but improvement has leveled off and sometimes slips. It's not getting any better.
I know the potential problems in later life associated with the stimulant meds, but I really feel that without the meds they do not have the chance to succeed, no matter what else we do for them. This gives them that chance.
Sunday, March 20, 2011
Intake Assessment (and a General Update)
I met with a psychologist from the Autism Center at Children's Hospital for an "intake assessment," which apparently was just me talking with her, going over all the information about his current treatments and evaluations while he played with their toys and made a mess (and towards the end of the meeting, escaped out the door and down the hall).
The gist of this meeting is, the next step in Joseph's treatment is to get an Early Intensive Behavior Intervention (EIBI) program started (which for the sake of simplicity, I will henceforth refer to inaccurately as ABA). This will probably involve about 20 hours of one-on-one work with trained ABA aides after school. My niece is going to be one of the aides, but the doctor said we need to have at least one more aide from outside the home, so that Joseph doesn't think that Celia is the only person he needs to "work" for.
Once we find a second aide, they, Celia, and Kristy will attend a three part aide training program in May (offered every 2 months) and a doctor from the Autism Center will come out to observe Joseph and put together his treatment plan and train us and the aides on how to implement it.
We apparently can use a program called HealthChek to have Medicaid pay for the aides even, so we should be able to do all this with little or no out-of-pocket expense.
The iPad continues to be an invaluable tool. Joseph is playing games that help develop fine motor and language skills. Until we get the ABA program going, I think we will probably have Celia sit in on some of Joseph's speech therapy sessions so she can work with him at our home on his speech. I expect that the iPad will also be very helpful as a formal part of Joseph's ABA program, since it can be both a learning tool and a reward at the same time.
We're also preparing to shuffle bedrooms so that Maria and the new baby (coming in August) will have a bedroom and Joseph will have his own room. When we do that, we should be able to get a small table and chairs that can be stored in his closet and brought out then it's time to do work at home. There are too many distractions everywhere else in our home to expect him to be able to focus. Plus, Maria will be able to have STUFF in her room, which will be nice for her.
Spring break is this week. Celia is going to spend the week here to help out, but pray for my sanity anyway. :) We're going to COSI and do all kinds of cool stuff, hopefully. As well as do spring cleaning and move the bedrooms.
Oh, and Joseph is taking a break for Occupational Therapy, which will resume in 6 weeks or so. I talked to his OT and in the next session we're going to try Therapeutic Listening, which I've heard great things about from a couple other parents.
Gary at A4CWSN who gave Joseph his iPad wants to give iPads to other kids with Autism Spectrum Disorders. Please consider making a donation to this project to help other kids the way Joseph has been helped. Also, he's still taking applications for other families to receive iPads, so it wouldn't hurt to add your name to the list!
The gist of this meeting is, the next step in Joseph's treatment is to get an Early Intensive Behavior Intervention (EIBI) program started (which for the sake of simplicity, I will henceforth refer to inaccurately as ABA). This will probably involve about 20 hours of one-on-one work with trained ABA aides after school. My niece is going to be one of the aides, but the doctor said we need to have at least one more aide from outside the home, so that Joseph doesn't think that Celia is the only person he needs to "work" for.
Once we find a second aide, they, Celia, and Kristy will attend a three part aide training program in May (offered every 2 months) and a doctor from the Autism Center will come out to observe Joseph and put together his treatment plan and train us and the aides on how to implement it.
We apparently can use a program called HealthChek to have Medicaid pay for the aides even, so we should be able to do all this with little or no out-of-pocket expense.
The iPad continues to be an invaluable tool. Joseph is playing games that help develop fine motor and language skills. Until we get the ABA program going, I think we will probably have Celia sit in on some of Joseph's speech therapy sessions so she can work with him at our home on his speech. I expect that the iPad will also be very helpful as a formal part of Joseph's ABA program, since it can be both a learning tool and a reward at the same time.
We're also preparing to shuffle bedrooms so that Maria and the new baby (coming in August) will have a bedroom and Joseph will have his own room. When we do that, we should be able to get a small table and chairs that can be stored in his closet and brought out then it's time to do work at home. There are too many distractions everywhere else in our home to expect him to be able to focus. Plus, Maria will be able to have STUFF in her room, which will be nice for her.
Spring break is this week. Celia is going to spend the week here to help out, but pray for my sanity anyway. :) We're going to COSI and do all kinds of cool stuff, hopefully. As well as do spring cleaning and move the bedrooms.
Oh, and Joseph is taking a break for Occupational Therapy, which will resume in 6 weeks or so. I talked to his OT and in the next session we're going to try Therapeutic Listening, which I've heard great things about from a couple other parents.
Gary at A4CWSN who gave Joseph his iPad wants to give iPads to other kids with Autism Spectrum Disorders. Please consider making a donation to this project to help other kids the way Joseph has been helped. Also, he's still taking applications for other families to receive iPads, so it wouldn't hurt to add your name to the list!
Thursday, March 10, 2011
An Incredible and Unexpected Gift
Yesterday, the UPS man brought a special gift for Joseph.
Since we got Joseph his iPod Touch, one of my new favorite websites has become A4CWSN (Apps for Children With Special Needs). I mentioned the site previously in my most recent post about Joseph and his iPod. Gary James records comprehensive video reviews of all the apps listed on his site, which is wonderful because it can be hard to determine if an app will suit your needs from the description alone and there are so many apps to choose from in the iTunes app store that it can be hard to find the good ones. Gary himself is the father of five children, two of whom are autistic.
Gary read about how much we appreciated his website, and that Joseph had only an iPod Touch and not an iPad yet. He offered to help us get an iPad for Joseph, and a week later UPS was delivering one.
I cannot express how grateful we all are to Gary for this generous and unexpected gift. Joseph loves it, and wouldn't put it down for hours after I loaded his apps on it. I couldn't even get him to let me touch it. :) Joseph's speech therapist is already researching how she can integrate the iPad into Joseph's therapy and I expect it will be a great help to Joseph.
Please subscribe to Gary's blog, Apps 4 Children With Special Needs, follow him on Twitter and 'like' him on Facebook. He wants to help more kids like Joseph get access to this technology.
Gary read about how much we appreciated his website, and that Joseph had only an iPod Touch and not an iPad yet. He offered to help us get an iPad for Joseph, and a week later UPS was delivering one.
I cannot express how grateful we all are to Gary for this generous and unexpected gift. Joseph loves it, and wouldn't put it down for hours after I loaded his apps on it. I couldn't even get him to let me touch it. :) Joseph's speech therapist is already researching how she can integrate the iPad into Joseph's therapy and I expect it will be a great help to Joseph.
Please subscribe to Gary's blog, Apps 4 Children With Special Needs, follow him on Twitter and 'like' him on Facebook. He wants to help more kids like Joseph get access to this technology.
Wednesday, March 2, 2011
What Defines Me (A Discussion About Labels)
In sociology, people are defined by 'statuses'. Statuses can be achieved or ascribed. Achieved statuses are a result of the person's own choices while ascribed statuses are involuntary.
My achieved statuses would include:
Whether we like it or not, my son holds the ascribed status of Autistic. I'm sure that we can agree, that status should not be his master status, defining him and consequently limiting what he can expect to achieve in his life. Since we all agree, that's why this post isn't about that. This post is about MY master status.
I spent about eight months last year, leading up to Joseph's diagnosis, mostly quietly, reading articles, watching videos and learning about autism. Once we got his diagnosis in August, it grew to consume a large part of my life. "Father of a child with Autism" became my master status, an ascribed one, probably because it's the one that I felt (and still often feel) least suited to handle, it's certainly the one that challenges me the most. Maybe because it lets me know that I'm not just a dad who has a hard time "handling" his kid.
So I don't want my son's master status to be "Autistic" and I don't want my daughter's master status to be "Sister of Autistic Guy," so can "Father of a child with Autism" be my own master status? Does that, by extension, make his master status in my eyes "Autistic"? Is there something wrong with that? For my sake, for my son's?
My achieved statuses would include:
- Photographer
- Father
- Husband
- Guy who likes Reggae music
- Man
- Caucasian
- Son
- Brother
- Guy with a red beard
- Father of a Child with Autism
Whether we like it or not, my son holds the ascribed status of Autistic. I'm sure that we can agree, that status should not be his master status, defining him and consequently limiting what he can expect to achieve in his life. Since we all agree, that's why this post isn't about that. This post is about MY master status.
I spent about eight months last year, leading up to Joseph's diagnosis, mostly quietly, reading articles, watching videos and learning about autism. Once we got his diagnosis in August, it grew to consume a large part of my life. "Father of a child with Autism" became my master status, an ascribed one, probably because it's the one that I felt (and still often feel) least suited to handle, it's certainly the one that challenges me the most. Maybe because it lets me know that I'm not just a dad who has a hard time "handling" his kid.
So I don't want my son's master status to be "Autistic" and I don't want my daughter's master status to be "Sister of Autistic Guy," so can "Father of a child with Autism" be my own master status? Does that, by extension, make his master status in my eyes "Autistic"? Is there something wrong with that? For my sake, for my son's?
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