PDA

View Full Version : DIS Dads disABILITIES Thread


DisDadDoc
05-10-2011, 10:06 PM
For my family, Disney has been a great blessing- somewhere where we can vacation without judgement & all have fun. How about a thread to discuss parenting children with special needs? A thread to celebrate the triumphs, commiserate with other dads, or just to vent! Please join me!

DisDadDoc
05-10-2011, 10:07 PM
Placeholder.

ClearScreen
05-10-2011, 10:10 PM
I'm totally in on this.

My son has allergies to peanuts, tree nuts, sesame, peas, legumes, carrots, celery and tree pollen.

Disney is usually great about this and were very accommodating to us last year. I have lots of information/thoughts to share on the subject of food allergies and Disney.

ClearScreen

AJRitz
05-10-2011, 10:35 PM
I'm checking in here too. Squeaker has ADHD. We somehow managed to survive our first trip to Walt Disney World about a month before he was diagnosed. We have since been through the experience of finding the right medication for treatment (for the record, if my count is correct, we're finally having success with option #4), finding the right dosage, and are currently working through re-training his behavior (now that he's physiologically capable of responding appropriately).

We're looking forward to an opportunity to experience WDW with the "new" Squeaker (though the side-effects of his meds present their own issues) at some point in the not-to-distant future.

DEA
05-10-2011, 11:46 PM
For what it's worth, I've been an insulin-dependent diabetic for going on 29 years now. If that particular issue comes up, I might be able to throw in some information. I pop in on the main disAbilities board on occasion when something diabetic-y shows up.

DisDr.
05-11-2011, 12:14 AM
Will be glad to support and help in any way...

Rental01
05-11-2011, 12:35 AM
I think this is a great idea.

/me signs up!

tutter99
05-11-2011, 10:31 AM
Hi guys! While DS has not been "officially" diagnosed with anything, we have spent the better part of the last year and a half dealing with erratic behavior. At the moment the current thought process is he has a dangerous combination of immaturity and high intelligence which basically means he is constantly acting impulsively just to see what the result is. I've had some great advice from some of the other DisDads since a lot of his actions mimic ADHD (and ADD, and ODD, and Autism).

After 6 months of unbelievable stress and frustration we finally have the school on board and last month they started the testing process to get him "labeled" so we can get him some additional help at school. He's only got about 20 days left this year but hopefully we will get a plan in place to have a much better year starting this fall.

DisDadDoc
05-11-2011, 11:21 AM
After 6 months of unbelievable stress and frustration we finally have the school on board and last month they started the testing process to get him "labeled" so we can get him some additional help at school. He's only got about 20 days left this year but hopefully we will get a plan in place to have a much better year starting this fall.

The best advice I ever got was to let them give the "worst" label possible. Doesn't change anything about your child, but forces the school to give him services which is what you really want and what will really help! Also, the waits at developmental clinics are typically outrageous (2 years at the one near us). But it is so important to have a trained person looking at him so that you don't waste years going down a path that isn't helpful.

I definitely know the feeling about counting down the days till the end of school. Feel like I'm sending him into the lions den many days this year. Good luck and God Bless Randy! With your love and support, I'm sure he'll do great!

AJRitz
05-11-2011, 12:11 PM
Hi guys! While DS has not been "officially" diagnosed with anything, we have spent the better part of the last year and a half dealing with erratic behavior. At the moment the current thought process is he has a dangerous combination of immaturity and high intelligence which basically means he is constantly acting impulsively just to see what the result is. I've had some great advice from some of the other DisDads since a lot of his actions mimic ADHD (and ADD, and ODD, and Autism).

After 6 months of unbelievable stress and frustration we finally have the school on board and last month they started the testing process to get him "labeled" so we can get him some additional help at school. He's only got about 20 days left this year but hopefully we will get a plan in place to have a much better year starting this fall.

The best advice I ever got was to let them give the "worst" label possible. Doesn't change anything about your child, but forces the school to give him services which is what you really want and what will really help! Also, the waits at developmental clinics are typically outrageous (2 years at the one near us). But it is so important to have a trained person looking at him so that you don't waste years going down a path that isn't helpful.

I definitely know the feeling about counting down the days till the end of school. Feel like I'm sending him into the lions den many days this year. Good luck and God Bless Randy! With your love and support, I'm sure he'll do great!

We just went through this over the past year with Squeaker. A few things that we learned that might be of help (and might not, as circumstances are somewhat different in different areas of the country):
1) Getting assessment through the schools is not ideal. It is in the school's interest to minimize issues, as any that are identified they become responsible for dealing with (and paying for). Also, many school districts use special education teachers to do assessments (because they're already on the payroll). While special education teachers do laudable work, they are NOT properly trained to use psychological assessment tools. They simply lack the education and clinical experience to do so properly. Once an assessment is done, it can be a battle to getting a different opinion - from an outside expert - completed.
2) It's a bear finding a psychiatrist who will treat a patient under about six-years-old. Pharmacology is a big part of psychiatric practice, and because the meds haven't been tested on young children (because virtually no meds are ever tested on young children) they are reluctant to take them as patients. It has even become difficult to find a psychologist who will work with a young child, unless the child shows signs of being on the autism spectrum. It's a function of dollars. Right now, the research money is flowing to autism spectrum research, so that's who the psychologists are taking as patients (to the extent that they are taking younger patients). We have found that the best combination was to find a child psychologist to do the assessment portion, and use a developmental pediatrician to handle the treatment side. We stumbled onto this quite by accident. We asked our pediatrician about a referral, and it turned out she is the leading developmental pediatrician in town! She's been wonderful to work with through this process. Squeaker still meets with the child psychologist periodically, to assess his progress and help us anticipate the next stage of hurdles.
3) IF a professional assessment identifies a form of ADD or ADHD, don't be afraid of the meds. While it may be true that ADHD meds are being overprescribed, in my opinion that is largely the result of the problems with getting good, professional, assessment done. It's not that the meds are inherently overused. It's that people who aren't really qualified to perform the assessments are recommending the meds, and pediatricians without a developmental speciality just go along with the recommendation and prescribe. The research data is truly stark. The effectiveness of non-medical ADHD treatment (i.e. behavior modification and/or counseling) is such a small percentage of cases that it barely exceeds the margin of error of the studies. Meanwhile, the effectiveness of medical intervention approaches 80%. It's worth working through the side effects and finding the right meds.

As I mentioned, we are still working through the behavior modification parts of this process with Squeaker. He has to be re-taught appropriate behavior, now that the meds he's taking enable him to control his behavior. He's sort of going through a double-boundary-pushing stage, pushing boundaries most 2-year-olds have already learned about, while also pushing age-appropriate Pre-K boundaries. But it's gotten MUCH MUCH MUCH better. And HE is a much happier child now than he was before. (BTW, I believe Squeaker's actual diagnosis is ADD with impulse control problems especially, which sounds quite a bit like what you have described as your son's issues. The combination of high intelligence and inability to learn appropriate behavior is an ADD red flag).

DisDadDoc
05-11-2011, 02:33 PM
1) Getting assessment through the schools is not ideal. It is in the school's interest to minimize issues, as any that are identified they become responsible for dealing with (and paying for). Also, many school districts use special education teachers to do assessments (because they're already on the payroll). While special education teachers do laudable work, they are NOT properly trained to use psychological assessment tools. They simply lack the education and clinical experience to do so properly. Once an assessment is done, it can be a battle to getting a different opinion - from an outside expert - completed.)

I agree. But in some parts of the country, the wait to see a developmental specialist is outrageous so you have to weigh the benefits/risks. Most special ed folks are well-meaning, but can be poorly educated in psychological assessment tools and certain areas. But many are eager to learn, and really want to work with you. In our case, we were fortunate enough to find small local educational conferences in the summer on autism and paid the relatively minimal ($100) registration fee for some teachers and paraprofessionals to go. Made a huge difference in terms of knowledge for these folks as well as goodwill from the school. You can argue all you want that the school needs to provide the training, but they don't and you have to know how to game the system a bit. If they like you, they are more likely to like/tolerate your child.

I disagree a little on it being a battle to get a different opinion. These diagnoses change all the time and schools are used to that. They might not want to test him more than once every 2 years, but you can test him all you want independently (unfortunately this costs big-$$$$). But focus on the services, not the diagnosis. If they'll give him 3 hours of occupational therapy a week, or a time out plan to keep him out of the principals office, who cares what his label is?


2) It's a bear finding a psychiatrist who will treat a patient under about six-years-old. Pharmacology is a big part of psychiatric practice, and because the meds haven't been tested on young children (because virtually no meds are ever tested on young children) they are reluctant to take them as patients.

Very true! Huge shortage of qualified child psychiatrists. And no one wants to medicate their child, but sometimes it is the best decision and can make a huge difference. For the most part, these aren't kids that are trying to be bad. They're trying to be good, and their brain chemistry won't let them. Removing that frustration can make a world of difference.


Right now, the research money is flowing to autism spectrum research

I wish this were true! As someone who is forced to try to compete for grants, I can report first hand that there is very little money out there. During President Bush, the NIH research budget was slashed and it hasn't gotten any better under Obama. And with the Great Ressession, foundations just aren't giving like they used to :confused3

AJRitz
05-11-2011, 02:54 PM
I agree. But in some parts of the country, the wait to see a developmental specialist is outrageous so you have to weigh the benefits/risks. Most special ed folks are well-meaning, but can be poorly educated in psychological assessment tools and certain areas. But many are eager to learn, and really want to work with you. In our case, we were fortunate enough to find small local educational conferences in the summer on autism and paid the relatively minimal ($100) registration fee for some teachers and paraprofessionals to go. Made a huge difference in terms of knowledge for these folks as well as goodwill from the school. You can argue all you want that the school needs to provide the training, but they don't and you have to know how to game the system a bit. If they like you, they are more likely to like/tolerate your child.

I disagree a little on it being a battle to get a different opinion. These diagnoses change all the time and schools are used to that. They might not want to test him more than once every 2 years, but you can test him all you want independently (unfortunately this costs big-$$$$). But focus on the services, not the diagnosis. If they'll give him 3 hours of occupational therapy a week, or a time out plan to keep him out of the principals office, who cares what his label is?



Very true! Huge shortage of qualified child psychiatrists. And no one wants to medicate their child, but sometimes it is the best decision and can make a huge difference. For the most part, these aren't kids that are trying to be bad. They're trying to be good, and their brain chemistry won't let them. Removing that frustration can make a world of difference.



I wish this were true! As someone who is forced to try to compete for grants, I can report first hand that there is very little money out there. During President Bush, the NIH research budget was slashed and it hasn't gotten any better under Obama. And with the Great Ressession, foundations just aren't giving like they used to :confused3

Like I said at the outset, there are differences from location to location. In our area, we are in the middle of two outstanding, nationally-recognized, school districts. Their "dirty secret" is that one of the ways that they maintain mainstream resources is by skimping as much as they can get away with on special education services. I know of several families that have been forced to get special education specialist attorneys involved to force the school districts to do what they're obligated to do. I agree that it's about services. Around here, the problem is that the services the school district is willing to make available seem to be strongly linked to diagnoses and the diagnoses tend to be poor.

While I agree with you that autism spectrum research deserves more funding, what I was saying (and what is true, at least in this area) is that what limited funding is available for child psychological research right now is being heavily directed to autism spectrum research. The big picture problem is that there are relatively few resources being devoted to child psychological research in general.

tutter99
05-11-2011, 03:30 PM
We've been pretty lucky so far, We managed to find a child psychiatrist who happened to be 1/2 mile from DS's school so he can be pulled out for an appointment and be back within an hour of leaving so it doesn't disrupt his schedule much. The psychiatrist is in his late 50's and a strong believer in drugs being the last option, he explained to us that unless he feels they will benefit DS as opposed to making the school's life easier he will not prescribe them. Some of the best advice he gave us was:
1. There are hundreds of books out there with thousands of tips and tricks, and every single one of those tricks works. But only 1% of those tips will work on any given child, so it is our job to not get frustrated until we hit the right combination.
2. When the school calls and tells us "Owen did this"; thank them for calling, tell them we will discuss it with Owen, then ask THEM what THEIR plan is to fix the issue. We spent months constantly trying to hammer in what the appropriate behaviors were and then sat there all day waiting to see if they work (which they rarely did) then started all over when he got home.

We are lucky in a sense because Owen got accepted to a Magnet School (it is a lottery, not based on needs or skills). They are part of the County School Board but go about the material in a different manner. His school is a Museum Magnet so a lot of their learning is based on exploring environments, group discussions, and self directed learning. The school also contains a program to help Kids with Autism get ready to enter kindergarten and the teaches have won many national awards for their work. These teachers also sit on the panel to come up with action plans for "regular students" who the teachers feel are having issues, they have been very helpful working with us to set up incentive plans for Owen. The school also has a physiologist on staff who is doing Owen's testing as well as working with our psychologist who will conduct some additional testing the school doesn't cover but he feels are needed to get a complete picture.

DisDadDoc
05-11-2011, 09:22 PM
Like I said at the outset, there are differences from location to location. In our area, we are in the middle of two outstanding, nationally-recognized, school districts. Their "dirty secret" is that one of the ways that they maintain mainstream resources is by skimping as much as they can get away with on special education services. I know of several families that have been forced to get special education specialist attorneys involved to force the school districts to do what they're obligated to do. I agree that it's about services. Around here, the problem is that the services the school district is willing to make available seem to be strongly linked to diagnoses and the diagnoses tend to be poor.

That's rough. Even in our town, where the special ed services are "good", I have friends that have to fight for their child's services because their doctor gave them a sensory processing disorder diagnosis or some other diagnosis that the school doesn't necessarily buy into. Fortunately, autism has protected status, so it is less touchable, but still, I feel like I need to go into to every PPT ready to fight to keep what my DS has. Not a good way to run a system.

When the school calls and tells us "Owen did this"; thank them for calling, tell them we will discuss it with Owen, then ask THEM what THEIR plan is to fix the issue. We spent months constantly trying to hammer in what the appropriate behaviors were and then sat there all day waiting to see if they work (which they rarely did) then started all over when he got home..

I LOVE this perspective. Too often they want you to solve the problem (and how can you do that when you're not there?) Turning it back on them is a great way to address it! :thumbsup2

Singledad
05-12-2011, 06:01 AM
Hi there! Popping in. My DD just went through her first through the school system evaluation, and got the label of Significant developmental delay until age 6. (she is 5 now.) She currently is in twice a week, 30 min at a time, OT to deal with fine motor skills and sensory processing disorder. The school's plan is to evaluate her for autism spectrum when she turns 6. My plan is to get her evaluated now. Why wait to start any other potentially helpful services? :confused3

Personally I have multiple issues myself (ADD is one of them), so yeah. just checking in. :rolleyes1

DisDadDoc
05-12-2011, 08:27 AM
Hi there! Popping in. My DD just went through her first through the school system evaluation, and got the label of Significant developmental delay until age 6. (she is 5 now.) She currently is in twice a week, 30 min at a time, OT to deal with fine motor skills and sensory processing disorder. The school's plan is to evaluate her for autism spectrum when she turns 6. My plan is to get her evaluated now. Why wait to start any other potentially helpful services? :confused3

Welcome! Sometimes it can be hard to come to a useful diagnosis. Frequently, I think, kids go through a few before they are "correctly" labeled (whatever that means). But your plan is a good one, start as early as possible!

Personally I have multiple issues myself (ADD is one of them), so yeah. just checking in. :rolleyes1

At our house, when we see one of these behaviors in ourselves (which frequently occurs!), we joke that DS "comes by it naturally" (to imply he gets it from us!).

Singledad
05-12-2011, 08:40 AM
Welcome! Sometimes it can be hard to come to a useful diagnosis. Frequently, I think, kids go through a few before they are "correctly" labeled (whatever that means). But your plan is a good one, start as early as possible!

Thank you for the welcome. Yeah I know about the troubles with diagnosis, and outside of the fact that the label helps define what therapy to try, I could care less what the label is. Call her spam for all I care, just make sure we are doing all we can to help her succeed to the best of her abilities!

At our house, when we see one of these behaviors in ourselves (which frequently occurs!), we joke that DS "comes by it naturally" (to imply he gets it from us!).
:lmao: Yeah, I can see me saying that about some of what DD does. :thumbsup2

DisDadDoc
05-12-2011, 10:08 AM
Call her spam for all I care, just make sure we are doing all we can to help her succeed to the best of her abilities

:rotfl2::rotfl2::rotfl2:

tutter99
05-12-2011, 11:00 AM
Hi there! Popping in. My DD just went through her first through the school system evaluation, and got the label of Significant developmental delay until age 6. (she is 5 now.) She currently is in twice a week, 30 min at a time, OT to deal with fine motor skills and sensory processing disorder. The school's plan is to evaluate her for autism spectrum when she turns 6. My plan is to get her evaluated now. Why wait to start any other potentially helpful services? :confused3

Personally I have multiple issues myself (ADD is one of them), so yeah. just checking in. :rolleyes1

Welcome! and thanks for stopping by.:thumbsup2

marcgiu
05-12-2011, 11:10 AM
Hi All

My 4 year old son had ASD and is the most amazing kid - he has learning difficulties sure but he is the nicest , friendliest , most affectionate child we know and everyday we feel priveliged to have him in our lives.

He is going to WDW for the 4th time in May (from London) and loves flying (more than me)

He has a 7 year old brother who he idolises and both can't wait for the next trip.

We know that he and us will have challenges but we could not have wished for more. Its sometimes easy to get down or worry about the future but I don't think all of us could be any happier
:grouphug:

DisDadDoc
05-12-2011, 11:14 AM
Hi All

My 4 year old son had ASD and is the most amazing kid - he has learning difficulties sure but he is the nicest , friendliest , most affectionate child we know and everyday we feel priveliged to have him in our lives.

He is going to WDW for the 4th time in May (from London) and loves flying (more than me)

He has a 7 year old brother who he idolises and both can't wait for the next trip.

We know that he and us will have challenges but we could not have wished for more. Its sometimes easy to get down or worry about the future but I don't think all of us could be any happier
:grouphug:

Welcome, Marc! Come join us on the main thread as well! http://www.disboards.com/showthread.php?t=2717685

My wife and I have often said to each other that if we could push a button and remove our son's autism, we wouldn't do it. It is too intrinsic to who he is and what we love so much about him!

marcgiu
05-13-2011, 09:47 AM
Welcome, Marc! Come join us on the main thread as well! http://www.disboards.com/showthread.php?t=2717685

My wife and I have often said to each other that if we could push a button and remove our son's autism, we wouldn't do it. It is too intrinsic to who he is and what we love so much about him!

Thanks for the welcome

I agree , I would not change a thing about our Son. We also had great news yesterday regarding his school as well. We wanted a school which gave him the support he wanted but also allowed intergration with the mainstream. We got our first choice.

Have many others had challenges/stresses regarding schools?

tutter99
05-19-2011, 12:45 PM
Well, we have our "post evaluation" meeting at the school on Monday. Came home the other night and DW was on the brink because the school psychologist had called to give her a "preview" of her findings. Basically told DW that its very inconclusive since he shows signs of ODD, ADHD, High Functioning Autism, and just extreme immaturity. Nice she was able to narrow it down for us!

She also brought up that she has never seen a child have a meltdown when his parents came to pick him up for an appointment before so maybe there were some issues that might be resolved through family counseling. The incident she was referring to happened two months ago, we have picked up DS from school at least 10 times without incident for Dr's appointments but on this occasion made the bad mistake of showing up at school when all his classmates were lining up to play outside for recess. But, they felt it should be in the report.

Also, it seems like his teacher is getting frustrated with having to "deal with him". DW sent an email to his teacher to point out that the daily point chart they use to help keep him on task had really looked like it had improved over the last few weeks. The teacher replied with all these other things that she considered a step backwards that we were hearing about for the first time. Have any of you experienced things like this where if it was any other kid it would be considered "normal" behavior for their age but since they are having to give your child extra attention they are being harder on them or going out of their way to point out things they are doing wrong?

AJRitz
05-19-2011, 01:15 PM
Well, we have our "post evaluation" meeting at the school on Monday. Came home the other night and DW was on the brink because the school psychologist had called to give her a "preview" of her findings. Basically told DW that its very inconclusive since he shows signs of ODD, ADHD, High Functioning Autism, and just extreme immaturity. Nice she was able to narrow it down for us!

She also brought up that she has never seen a child have a meltdown when his parents came to pick him up for an appointment before so maybe there were some issues that might be resolved through family counseling. The incident she was referring to happened two months ago, we have picked up DS from school at least 10 times without incident for Dr's appointments but on this occasion made the bad mistake of showing up at school when all his classmates were lining up to play outside for recess. But, they felt it should be in the report.

Also, it seems like his teacher is getting frustrated with having to "deal with him". DW sent an email to his teacher to point out that the daily point chart they use to help keep him on task had really looked like it had improved over the last few weeks. The teacher replied with all these other things that she considered a step backwards that we were hearing about for the first time. Have any of you experienced things like this where if it was any other kid it would be considered "normal" behavior for their age but since they are having to give your child extra attention they are being harder on them or going out of their way to point out things they are doing wrong?

We had some similar issues with the daily reports we were getting from DS' teachers. We were quite blunt with them. We simply said that the purpose of those forms wasn't to blow sunshine up our a$$e$ and make us feel better about how things were going. They were the only tool we had to monitor how things were REALLY going when he was apart from us, and if they weren't going to give us the full picture - the good and the bad - then the forms were useless. The teacher actually sounded relieved after we said that. Unfortunately, far too many parents only want to hear about what angels their children are, and will actually argue with the teacher about including negative things on the reports. :rolleyes:

Unfortunately, the things you're describing from the evaluation are good examples of why it is my opinion that evaluation should be done by a professional, third-party, evaluator and not a school psychologist. While there's no "magic" to nailing down a psychological diagnosis, they really should be able to do better than that. What you report sounds to me like a very much "by-the-numbers" approach (Option "A" was marked three times on the evaluation, and Option "B" was marked two times, and Option "C" was marked four times -- gee, it could be any of them!?!), which lacks the critical analysis of those numbers that you should be able to get from a developmental specialist.

Singledad
05-19-2011, 02:33 PM
Have many others had challenges/stresses regarding schools?

I think most of my challenges/stresses with the school go more along the lines of I do not speak up enough/was in too much of a hurry to start services.

I want DD in speech as well, but didn't push it. I want her evaluated for autism because of a fear I had back when she was younger, and then the school stating this is a pattern they see in autistic kids. But rather than push for it right away, I just wanted to sign off and say we can tackle that later, lets just get OT started!

So now if I Wanted the school to do an eval for autism I would have to wait until she is 6 years old and her current label expires. and speech wouldn't really be done until then either. (teacher said they usually don't worry about speech until they are 8! seriously, that is TOO LONG to wait.)

That said, I have gotten a referral to get her formally evaluated by a child development center. Why wait when I can get this done via the medical community and know they are looking at the full picture, not just autism, not just how this would effect her learning. plus, I could possibly get her into a speech therapist over the summer, who knows. I just got off the phone with the person who arranges things and she warned me that it would most likely wouldn't be until late summer that she gets actually evaluated. Still sooner than when she turns 6. (which would mean waiting nearly a full year for results.)

DisDadDoc
05-20-2011, 09:23 AM
Well, we have our "post evaluation" meeting at the school on Monday. Came home the other night and DW was on the brink because the school psychologist had called to give her a "preview" of her findings. Basically told DW that its very inconclusive since he shows signs of ODD, ADHD, High Functioning Autism, and just extreme immaturity. Nice she was able to narrow it down for us!

Your school psychologist sounds like a gem! (not!) I think I'm starting to come around to Aaron's point of view in your case, you need a medical person who can actually sort through the clinical picture and come to a diagnosis, rather than the check boxes approach.

She also brought up that she has never seen a child have a meltdown when his parents came to pick him up for an appointment before so maybe there were some issues that might be resolved through family counseling. The incident she was referring to happened two months ago, we have picked up DS from school at least 10 times without incident for Dr's appointments but on this occasion made the bad mistake of showing up at school when all his classmates were lining up to play outside for recess. But, they felt it should be in the report.

This cements my view that she doesn't know what she's doing. Ridiculous. Did she actually talk to or observe your son to try to figure out what his trigger might have been? Or was she just jumping to a snap judgement? Sounds like the latter...

Have any of you experienced things like this where if it was any other kid it would be considered "normal" behavior for their age but since they are having to give your child extra attention they are being harder on them or going out of their way to point out things they are doing wrong?

All the time. It's a constant battle... :confused3

Hang in there, Randy!

DisDadDoc
05-20-2011, 09:35 AM
We had some similar issues with the daily reports we were getting from DS' teachers. We were quite blunt with them. We simply said that the purpose of those forms wasn't to blow sunshine up our a$$e$ and make us feel better about how things were going. They were the only tool we had to monitor how things were REALLY going when he was apart from us, and if they weren't going to give us the full picture - the good and the bad - then the forms were useless. The teacher actually sounded relieved after we said that. Unfortunately, far too many parents only want to hear about what angels their children are, and will actually argue with the teacher about including negative things on the reports. :rolleyes:

Although we've had the opposite experience. We like to hear both the good and the bad, but our son's teacher only has negative things to say. In fact, he seems to relish writing extensively on these forms about all the bad things he perceives. :confused3

Fortunately, he's made kind of a fool of himself over the year (with embellishing things to flat out lying) and his principal has been very supportive of us (essentially telling us that he agrees that this guy is an idiot).

Good to hear bad, but it can be overwhelming

DisneyFed
05-20-2011, 10:13 AM
My wife is a School Psychologist (Specialist Level School Psych--Master's plus 30--PhD Develeopmental)....

Anyway, she constantly battles with the schools she supports because of the exact same thing you guys are talking about here. She is very very very hesitant to "label" a young child (and I quote..."how do you label a kid like that? They are, after all, children who are developing, and contrary to popular belief no one, I repeat NO ONE develops the same way. There's no true rule book to this.)

Her main pet peeve is that teachers (here at least) don't want to teach anything other than the kids who are perfect angels (few) and that "get it" the first time every time (even fewer). I've heard some of her meetings, essentially if the teacher has to put any kind of effort into the child at all "something's wrong with them and they need to be self contained, diagnosed, removed from my classroom...etc. etc.". God forbid any extra effort might get involved.

What ends up happening is the Guidance Counselors and Principals end up backing the teachers (they work at the schools, my wife works for the District) and really fight her on findings, suggestions etc. etc. She will often give advice on how to work with the child (like giving stars for meeting goals, etc.), but they often refuse to do it because "the other kids don't need it, why does he"...

It gets very frustrating for her. I'm not saying all School Psychs are this way, some in her office are not....they are more interested in serving the interest of the school than of the child.

My wife considers herself a Child Advocate, and the heck with what's easiest for the school....though sometimes she does have to deliver less than desireable news to parents, but even so she will tell them there's nothing "wrong" with their child....there are just things that can be done to help them.

My wife blames standardized testing for a lot of this....school's are more worried about getting that "passing grade" than they are "teaching kids"...

Wow...maybe this needs to be in the Rant Thread:lmao:

tutter99
05-20-2011, 11:58 AM
The first time we got the call from the school "suggesting" we talk to DS's Dr about ADHD we made an appointment with a child psychologist. We have met weekly with him since December and take in all the "point sheets" and notes we get from the school. We had discussed testing with him but since he was under the opinion it was just immaturity we agreed to take a sit back and wait approach. When the school said they wanted to do testing we spoke to our psychologist and he said since a good portion of the testing was "standard" we should let the school do it as opposed to us paying him to do it, then he would do the other developmental evaluations which the school excludes, because they rarely support their case or brings up additional service needs, that would give a more complete view of DS.

Doc - I know it hasn't been very long but have you noticed any changes now that you have the dog? Apart from spots on the rug?

Singledad
05-24-2011, 06:16 PM
we got the extended school year services! woot! :woohoo: I was pretty worried that since we didn't have documented loss of skills, the head guy would try to deny DD ESY, but with me knowing about the emerging skills part of ESY we managed to get it.

OT 1x a week for 8 weeks, starting when their summer school program starts. (june 20 something.) so she will still have some break times, but not the full span of 3 months. :cool1: :yay: :woohoo: :banana: :cool1:

also, it is awesome to see others who near bout cry talking about how much progress DD has made in this small amount of time. Today was the fathers day brunch at headstart. when I got there I got to see DD painting on the easel, standing right next to a photo from the beganning of this year of her painting there... in the photo she is holding her brush in a fist grip. Today she was holding it right! Where is the happy tears smiley? :lovestruc

Then her 4k teacher mentioned how today, DD and I got to the school early for OT, so we went to the playground and the AM 4k class was headed out too. For the first time today her teacher watched DD walk outside to play hand in hand with another kid. :eek: :woohoo: Sure it only lasted about 30 sec, but for my kid, that is HUGE. :cloud9:

and talking life skills, I got to share the news that for the first time in her life, yesterday DD wiped herself after going #2. :eek: :eek: :eek: :worship:
I mean, I wouldn't have even known if she hadn't forgotten to flush! Who cares about that really? :rolleyes1 She wiped!!! :woohoo:

I could go on about these emerging skills, but seriously, it was such a great feeling hearing and sharing these 'little things' that we all are seeing in DD since she started OT. Not even a full two months later, and we are seeing such strides! :lovestruc :cloud9:

I wrote most of this in my trip report, but figured it also went here as well. :goodvibes

tutter99
05-24-2011, 06:35 PM
we got the extended school year services! woot! :woohoo: I was pretty worried that since we didn't have documented loss of skills, the head guy would try to deny DD ESY, but with me knowing about the emerging skills part of ESY we managed to get it.

OT 1x a week for 8 weeks, starting when their summer school program starts. (june 20 something.) so she will still have some break times, but not the full span of 3 months. :cool1: :yay: :woohoo: :banana: :cool1:

also, it is awesome to see others who near bout cry talking about how much progress DD has made in this small amount of time. Today was the fathers day brunch at headstart. when I got there I got to see DD painting on the easel, standing right next to a photo from the beganning of this year of her painting there... in the photo she is holding her brush in a fist grip. Today she was holding it right! Where is the happy tears smiley? :lovestruc

Then her 4k teacher mentioned how today, DD and I got to the school early for OT, so we went to the playground and the AM 4k class was headed out too. For the first time today her teacher watched DD walk outside to play hand in hand with another kid. :eek: :woohoo: Sure it only lasted about 30 sec, but for my kid, that is HUGE. :cloud9:

and talking life skills, I got to share the news that for the first time in her life, yesterday DD wiped herself after going #2. :eek: :eek: :eek: :worship:
I mean, I wouldn't have even known if she hadn't forgotten to flush! Who cares about that really? :rolleyes1 She wiped!!! :woohoo:

I could go on about these emerging skills, but seriously, it was such a great feeling hearing and sharing these 'little things' that we all are seeing in DD since she started OT. Not even a full two months later, and we are seeing such strides! :lovestruc :cloud9:

I wrote most of this in my trip report, but figured it also went here as well. :goodvibes


AWESOME NEWS! Congrats on the services. Sounds like she is making some great advances:cool1::cool1::cool1::cool1:

Hope you have lots more opportunities to need the "happy tears smiley" in the coming months.

DisDadDoc
05-25-2011, 08:53 AM
we got the extended school year services! woot! :woohoo: I was pretty worried that since we didn't have documented loss of skills, the head guy would try to deny DD ESY, but with me knowing about the emerging skills part of ESY we managed to get it.

OT 1x a week for 8 weeks, starting when their summer school program starts. (june 20 something.) so she will still have some break times, but not the full span of 3 months. :cool1: :yay: :woohoo: :banana: :cool1:

also, it is awesome to see others who near bout cry talking about how much progress DD has made in this small amount of time. Today was the fathers day brunch at headstart. when I got there I got to see DD painting on the easel, standing right next to a photo from the beganning of this year of her painting there... in the photo she is holding her brush in a fist grip. Today she was holding it right! Where is the happy tears smiley? :lovestruc

Then her 4k teacher mentioned how today, DD and I got to the school early for OT, so we went to the playground and the AM 4k class was headed out too. For the first time today her teacher watched DD walk outside to play hand in hand with another kid. :eek: :woohoo: Sure it only lasted about 30 sec, but for my kid, that is HUGE. :cloud9:

and talking life skills, I got to share the news that for the first time in her life, yesterday DD wiped herself after going #2. :eek: :eek: :eek: :worship:
I mean, I wouldn't have even known if she hadn't forgotten to flush! Who cares about that really? :rolleyes1 She wiped!!! :woohoo:

I could go on about these emerging skills, but seriously, it was such a great feeling hearing and sharing these 'little things' that we all are seeing in DD since she started OT. Not even a full two months later, and we are seeing such strides! :lovestruc :cloud9:

I wrote most of this in my trip report, but figured it also went here as well. :goodvibes

That's wonderful news! I'm very happy for you!

Don't be embarassed to tear up. I relish those tears of joy! You have to embrace the positive!

tutter99
05-26-2011, 12:45 PM
Well we had our school meeting Monday, and I’m proud to say I didn’t go off on anyone………………….for the first 45 minutes. The school psychologist brought up DS’s meltdown when we picked him up a recess that one day again and I asked her completely straight faced if she felt it was common practice to base a diagnosis or make recommendations on 1 incident out of 20 events that was to this point unrepeated?:confused3 Apparently this was her “trigger” (Funny, I found hers but she can't find DS's) because she went off on a rant about the reason we didn’t see the behaviors at home that they see at school is because we are “enabling him” and that we should make future appointments that pull him out of class just as he is going to recess to see if the behavior repeats itself. I told her if that was the case then all these meetings we have sat through at the school where they explained how they were “refocusing” DS to keep him engaged was really just “enabling him” (just a note here, I don’t think school psychologist like you making finger quotes in the air).

So enough fun, in order to get him the services he needs we are agreeing to have him labeled by the school as ADHD, although their evaluation showed signs of ADD, ADHD, ODD, High Functioning Autism, Bipolarism, and a few other things (how’s that for narrowing it down?). The other route they were suggesting was to label him as Severe Behavioral/Emotional Developmentally Delayed which was the red flag we were told by our Psychologist to watch out for because that would open the door for them to try to assign him to a full time special ed class. The ADHD plan would give him special education resources a few times a week for 30 minutes and for his grade one teacher to be able to request assistance from the special ed department to assist if he was having a rough day (ie a quieter place for him to go and finish work or discuss what is bothering him).

The very interesting part of the meeting came when we reviewed the educational portion of the testing. We knew going into this that a lot of DS’s problems were caused by him being bright for his age and possibly being a bit bored in class. The testing put his IQ at 129 and in the aptitude testing for his verbal and reading skills he ranked in the 99th percentile. Due to the results of the testing the principal finally admitted that there was no way she could recommend he be held at the kindergarten level:worship: and that she had already contacted a rep from the academically gifted program to meet with us and his potential teacher for next year to begin developing an IEP and a strategy to keep him engaged with the class but at the same time challenged academically.

I thank you all for the support on this thread, and Chris for your support on FB. It’s still going to be a rough ride for the next couple of years to get him started on track but at least we know what type of ride we are on now! Medication probably won’t be discussed until the fall since he only exhibits these behaviors at school but I’m sure I’ll have lots more questions when that starts.

AJRitz
05-26-2011, 12:55 PM
Well we had our school meeting Monday, and I’m proud to say I didn’t go off on anyone………………….for the first 45 minutes. The school psychologist brought up DS’s meltdown when we picked him up a recess that one day again and I asked her completely straight faced if she felt it was common practice to base a diagnosis or make recommendations on 1 incident out of 20 events that was to this point unrepeated?:confused3 Apparently this was her “trigger” (Funny, I found hers but she can't find DS's) because she went off on a rant about the reason we didn’t see the behaviors at home that they see at school is because we are “enabling him” and that we should make future appointments that pull him out of class just as he is going to recess to see if the behavior repeats itself. I told her if that was the case then all these meetings we have sat through at the school where they explained how they were “refocusing” DS to keep him engaged was really just “enabling him” (just a note here, I don’t think school psychologist like you making finger quotes in the air).

So enough fun, in order to get him the services he needs we are agreeing to have him labeled by the school as ADHD, although their evaluation showed signs of ADD, ADHD, ODD, High Functioning Autism, Bipolarism, and a few other things (how’s that for narrowing it down?). The other route they were suggesting was to label him as Severe Behavioral/Emotional Developmentally Delayed which was the red flag we were told by our Psychologist to watch out for because that would open the door for them to try to assign him to a full time special ed class. The ADHD plan would give him special education resources a few times a week for 30 minutes and for his grade one teacher to be able to request assistance from the special ed department to assist if he was having a rough day (ie a quieter place for him to go and finish work or discuss what is bothering him).

The very interesting part of the meeting came when we reviewed the educational portion of the testing. We knew going into this that a lot of DS’s problems were caused by him being bright for his age and possibly being a bit bored in class. The testing put his IQ at 129 and in the aptitude testing for his verbal and reading skills he ranked in the 99th percentile. Due to the results of the testing the principal finally admitted that there was no way she could recommend he be held at the kindergarten level:worship: and that she had already contacted a rep from the academically gifted program to meet with us and his potential teacher for next year to begin developing an IEP and a strategy to keep him engaged with the class but at the same time challenged academically.

I thank you all for the support on this thread, and Chris for your support on FB. It’s still going to be a rough ride for the next couple of years to get him started on track but at least we know what type of ride we are on now! Medication probably won’t be discussed until the fall since he only exhibits these behaviors at school but I’m sure I’ll have lots more questions when that starts.
Congrats on getting the services your son needs, recognizing the attempt to warehouse your child, and restraining yourself from choking the #$!^ out of someone who so desperately deserved it. :thumbsup2

Squeaker has had a really rough week. He's been mostly OK at school, but at home he's been on a hair-trigger for a random meltdown. I suspect that part of it may be that he's in the midst of a growth spurt, and that's messing with the absorption rate of his meds (hence the tendency to melt down in the morning, when he hasn't had his morning dose yet, and after we get home in the evening, but before he's had his evening dose yet). I just hope we're able to get him back under control soon. I've got that training trip to Colorado at the end of June, and at this point I'm concerned about DW's ability to deal with him by herself when he goes into full meltdown mode. He's just gotten so big and strong, I'm nervous about her ability to keep from getting injured and/or keep him from injuring himself.

DisDadDoc
05-27-2011, 08:16 AM
Well we had our school meeting Monday, and I’m proud to say I didn’t go off on anyone………………….for the first 45 minutes. The school psychologist brought up DS’s meltdown when we picked him up a recess that one day again and I asked her completely straight faced if she felt it was common practice to base a diagnosis or make recommendations on 1 incident out of 20 events that was to this point unrepeated?:confused3 Apparently this was her “trigger” (Funny, I found hers but she can't find DS's) because she went off on a rant about the reason we didn’t see the behaviors at home that they see at school is because we are “enabling him” and that we should make future appointments that pull him out of class just as he is going to recess to see if the behavior repeats itself. I told her if that was the case then all these meetings we have sat through at the school where they explained how they were “refocusing” DS to keep him engaged was really just “enabling him” (just a note here, I don’t think school psychologist like you making finger quotes in the air).

So enough fun, in order to get him the services he needs we are agreeing to have him labeled by the school as ADHD, although their evaluation showed signs of ADD, ADHD, ODD, High Functioning Autism, Bipolarism, and a few other things (how’s that for narrowing it down?). The other route they were suggesting was to label him as Severe Behavioral/Emotional Developmentally Delayed which was the red flag we were told by our Psychologist to watch out for because that would open the door for them to try to assign him to a full time special ed class. The ADHD plan would give him special education resources a few times a week for 30 minutes and for his grade one teacher to be able to request assistance from the special ed department to assist if he was having a rough day (ie a quieter place for him to go and finish work or discuss what is bothering him).

The very interesting part of the meeting came when we reviewed the educational portion of the testing. We knew going into this that a lot of DS’s problems were caused by him being bright for his age and possibly being a bit bored in class. The testing put his IQ at 129 and in the aptitude testing for his verbal and reading skills he ranked in the 99th percentile. Due to the results of the testing the principal finally admitted that there was no way she could recommend he be held at the kindergarten level:worship: and that she had already contacted a rep from the academically gifted program to meet with us and his potential teacher for next year to begin developing an IEP and a strategy to keep him engaged with the class but at the same time challenged academically.

I thank you all for the support on this thread, and Chris for your support on FB. It’s still going to be a rough ride for the next couple of years to get him started on track but at least we know what type of ride we are on now! Medication probably won’t be discussed until the fall since he only exhibits these behaviors at school but I’m sure I’ll have lots more questions when that starts.

Wow. Excellent job not punching anyone in the face! :thumbsup2:thumbsup2 (although no jury would convict you!)

Does your private psychologist feel comfortable diagnosing him? You probably haven't had a chance to shown him/her the school's assessments yet, but maybe he/she can sort through it?

Yes, try to avoid the "Severe Behavioral/Emotional Developmentally Delayed" label or the "Oppositional Defient Disorder" label. Both of those make it easier for them to not mainstream him, which could make him even more bored, causing him to act out more, etc...

I'm going to put in another plug for scouts and boys like your (and my son). It really gives you a chance to have him interact in a larger group setting, and since you can be there with him, you can step in and make course corrections. Since it is you there, not the school, you can be sure that he's getting the support he needs. He can also make friends and it gives him a "team" identity. As these kids get older, self-esteem can be a real problem. Having a team/groupp identity that they can fall back on is a huge deal to help prevent that. Tiger dens start in 1st grade.

tutter99
08-22-2011, 12:04 PM
Hey Dads!

I thought I would resurrect this thread since the new school year is starting.

DS starts on Thursday and we have a meet the teacher night tonight. I am hoping for a better year this year now that we have identified DS's issues and can have a plan in place from the start instead of spending 3/4 of the school year debating whether or not he is doing these things on purpose.

Here's my question: DW and I have noticed some definite improvements in maturity in DS over the summer as we gave him more responsibility, of course we have no idea how he will behave when he gets into a class with 20 other kids. Do we wait and see how it goes for a few weeks or should we work with the teacher to immediately implement the plan that was started in the spring? I would like for him to have consistency right off the bat but at the same time I don't know if bringing up all the things he "did wrong" in the spring might hurt his self confidence since he tends to be hard on himself.

AJRitz
08-22-2011, 01:35 PM
Hey Dads!

I thought I would resurrect this thread since the new school year is starting.

DS starts on Thursday and we have a meet the teacher night tonight. I am hoping for a better year this year now that we have identified DS's issues and can have a plan in place from the start instead of spending 3/4 of the school year debating whether or not he is doing these things on purpose.

Here's my question: DW and I have noticed some definite improvements in maturity in DS over the summer as we gave him more responsibility, of course we have no idea how he will behave when he gets into a class with 20 other kids. Do we wait and see how it goes for a few weeks or should we work with the teacher to immediately implement the plan that was started in the spring? I would like for him to have consistency right off the bat but at the same time I don't know if bringing up all the things he "did wrong" in the spring might hurt his self confidence since he tends to be hard on himself.

I vote for giving him the structure NOW, up front. Frame it the same way that you did here for us - you want to give him the opportunity to show how much he's matured over the summer. It's not about any past "failures." Rather, it's a way for him to track his progress and celebrate successes.

AJRitz
08-22-2011, 01:52 PM
I should probably post my own update as well, since DS4 started new meds recently. We had felt like we were seeing progress with the Intuniv, but after an initial adjustment period, it seemed that once DS shrugged off the med making him sleepy, it also became ineffective in helping him manage his behavior. As summer camp was ending, he had a couple of really explosive incidents (including one where he picked up another kid and actually threw him in the trash can :scared1:). So we finally took the "ultimate" step with his meds and started him on Adderall. This is essentially the medication of last resort at this stage. Our doctor isn't comfortable prescribing anything else to a child DS's age. He is still taking his Intuniv as well. More on that in a moment.

For the most part, the Adderall has been a good thing. He's doing much better at school. He started a new school year last Wednesday, and we haven't had a single report of a violent outburst (though it's admittedly only been three days). One of the big things I've noticed is that the Adderall appears to allow DS to process empathy in a way he couldn't before. I don't want to give away spoilers, but we watched a couple of different movies since the medication change, and he actually gets choked up/teary at emotionally appropriate moments - something he's never really done before.

The down side is that Adderall has screwed up his sleep cycle. It's very difficult for him to nap (it is, after all, essentially pure amphetamine). And because it is amphetamine, you have to let it "wear off" before bed. And it's pretty obvious when he's "coming down" from his meds. His behavior after the Adderall wears off is very difficult to manage. As I mentioned above, he's still taking his Intuniv. I'm considering suggesting that we delay giving that to him until he gets home from school, and see if that helps him as he's coming down from his Adderall.

Cinderella's Fella
08-22-2011, 01:55 PM
For both of you, Shalom aleikhem!

DisDadDoc
08-23-2011, 08:22 AM
Hey Dads!

I thought I would resurrect this thread since the new school year is starting.

DS starts on Thursday and we have a meet the teacher night tonight. I am hoping for a better year this year now that we have identified DS's issues and can have a plan in place from the start instead of spending 3/4 of the school year debating whether or not he is doing these things on purpose.

Here's my question: DW and I have noticed some definite improvements in maturity in DS over the summer as we gave him more responsibility, of course we have no idea how he will behave when he gets into a class with 20 other kids. Do we wait and see how it goes for a few weeks or should we work with the teacher to immediately implement the plan that was started in the spring? I would like for him to have consistency right off the bat but at the same time I don't know if bringing up all the things he "did wrong" in the spring might hurt his self confidence since he tends to be hard on himself.

I vote for giving him the structure NOW, up front. Frame it the same way that you did here for us - you want to give him the opportunity to show how much he's matured over the summer. It's not about any past "failures." Rather, it's a way for him to track his progress and celebrate successes.

I definitely agree. The school should expect that the plan is the same as the spring (for consistency) and Aaron's comment about "It's not about any past "failures." Rather, it's a way for him to track his progress and celebrate successes" is very well phrased! But should I expect anything less from our lawyer? :thumbsup2

DisDadDoc
08-23-2011, 08:48 AM
I should probably post my own update as well, since DS4 started new meds recently. We had felt like we were seeing progress with the Intuniv, but after an initial adjustment period, it seemed that once DS shrugged off the med making him sleepy, it also became ineffective in helping him manage his behavior. As summer camp was ending, he had a couple of really explosive incidents (including one where he picked up another kid and actually threw him in the trash can :scared1:). So we finally took the "ultimate" step with his meds and started him on Adderall. This is essentially the medication of last resort at this stage. Our doctor isn't comfortable prescribing anything else to a child DS's age. He is still taking his Intuniv as well. More on that in a moment.

For the most part, the Adderall has been a good thing. He's doing much better at school. He started a new school year last Wednesday, and we haven't had a single report of a violent outburst (though it's admittedly only been three days). One of the big things I've noticed is that the Adderall appears to allow DS to process empathy in a way he couldn't before. I don't want to give away spoilers, but we watched a couple of different movies since the medication change, and he actually gets choked up/teary at emotionally appropriate moments - something he's never really done before.

The down side is that Adderall has screwed up his sleep cycle. It's very difficult for him to nap (it is, after all, essentially pure amphetamine). And because it is amphetamine, you have to let it "wear off" before bed. And it's pretty obvious when he's "coming down" from his meds. His behavior after the Adderall wears off is very difficult to manage. As I mentioned above, he's still taking his Intuniv. I'm considering suggesting that we delay giving that to him until he gets home from school, and see if that helps him as he's coming down from his Adderall.

Glad to hear that's helping! I have a couple of friends locally who rave about the effects of Adderall on their kids. One of them has complained that it contributes to weight gain, so FYI

We haven't started school yet (next week), so keeping our fingers crossed! Our DS doesn't have his best 2 friends in his class or team this year, but he's handling it well and the kids and parents have agreed to do lots of sleepovers. He went through this once in 4th grade, so he's familiar with it. All in all, I'm impressed with how he's handling things. But I don't have to tell you guys that you're always waiting for that second shoe to drop...

AJRitz
08-23-2011, 11:26 AM
Glad to hear that's helping! I have a couple of friends locally who rave about the effects of Adderall on their kids. One of them has complained that it contributes to weight gain, so FYI

We haven't started school yet (next week), so keeping our fingers crossed! Our DS doesn't have his best 2 friends in his class or team this year, but he's handling it well and the kids and parents have agreed to do lots of sleepovers. He went through this once in 4th grade, so he's familiar with it. All in all, I'm impressed with how he's handling things. But I don't have to tell you guys that you're always waiting for that second shoe to drop...

DS had his best day yet yesterday! Only one minor meltdown at bedtime. Most importantly, another kid took his recently-acquired Perry the Platypus plush, and colored on Perry's bill and tail. In the past, this would be caused an impulse reaction that almost certainly would have involved a call from the school to come and pick him up. (Even if the other kid deserves it, you just can't smack another kid in the head). But instead, he kept it together and remained calm while Perry got a "bath" when he got home and (luckily) came out all clean. Yay!

Interesting about the weight gain thing. Most of what I've read (and seen, based on DS' response) suggests that Adderall usually leads to weight loss (amphetamine amps up metabolism, and contributes to loss of appetite). Though I could see some weight gain being caused simply by the fact that the kid is capable of sitting at the table at mealtime!

tutter99
08-23-2011, 01:23 PM
DS had his best day yet yesterday! Only one minor meltdown at bedtime. Most importantly, another kid took his recently-acquired Perry the Platypus plush, and colored on Perry's bill and tail. In the past, this would be caused an impulse reaction that almost certainly would have involved a call from the school to come and pick him up. (Even if the other kid deserves it, you just can't smack another kid in the head). But instead, he kept it together and remained calm while Perry got a "bath" when he got home and (luckily) came out all clean. Yay!


Great news, he did better than I would have if someone defaced (or de-billed, or de-tailed, you get the idea) my Perry!

That's been one of the rough spots with DS, getting him to realize that even if someone does something to him, if he retaliates, he will probably be the one who is blamed. Is it fair? no, but it's pretty much the rules he will have to live with his whole life since he will likely always be the tallest/biggest kid in his class.

DisDadDoc
08-24-2011, 08:17 AM
Interesting about the weight gain thing. Most of what I've read (and seen, based on DS' response) suggests that Adderall usually leads to weight loss (amphetamine amps up metabolism, and contributes to loss of appetite). Though I could see some weight gain being caused simply by the fact that the kid is capable of sitting at the table at mealtime!

Yes, you would think that wouldn't be the case (although you'd think that a stimulant wouldn't calm kids down, too!), but I think that's exactly it for this one! His weight gain has been dramatic. He finally sits still and can eat!

marcgiu
11-29-2011, 09:46 AM
Hope everyone is well

Has anyone see this thread - i'm glad the little girl is OK but I have never read so many ignorant comments regarding Autism/Disablities in my life!!

http://www.disboards.com/showthread.php?t=2839227&page=7

DisDadDoc
11-29-2011, 09:23 PM
Hope everyone is well

Has anyone see this thread - i'm glad the little girl is OK but I have never read so many ignorant comments regarding Autism/Disablities in my life!!

http://www.disboards.com/showthread.php?t=2839227&page=7


This thread is horrifying! There are some bad people out there on the internet. Really makes you appreciate what we have hear. I hope they banned most of the commenters on that thread.

Singledad
12-03-2011, 02:01 PM
Hope everyone is well

Has anyone see this thread - i'm glad the little girl is OK but I have never read so many ignorant comments regarding Autism/Disablities in my life!!

http://www.disboards.com/showthread.php?t=2839227&page=7

Holding in there! yourself?

I can't even finish reading that thread. :sad2: :sad1:

marcgiu
12-05-2011, 08:26 AM
Holding in there! yourself?

I can't even finish reading that thread. :sad2: :sad1:

All good thanks - Tomas is progressing well in reception and we are getting good reports

Thread is a joke - I was half dissapointed that it was closed when I come across it, may have had one or two things to say:mad:

How are everyones families?

tutter99
12-22-2011, 02:16 PM
Well DS had his check-in yesterday for us to go over his IEP (Improvised Education Plan) and for the most part it went very well. His teacher is awsome this year and the addition of him spending a couple of minutes each morning with with a social group to get him focused and review anything that might have gone wrong the previous day sems to have resolved a lot of issues.

We were able to break out his daily behavior chart by month and it showed a consistant improvement. At the begining of the year he was having about 50% of his days catagorized as good, it jumped up to the 60's in October, 65% in November and 80% in December:cool1:. I was pretty impresssed with that concidering the chaos that the holiday season takes on the "normal routine".

It was a bit strange, we thanked his teacher for being so strict with him and holding him to his classroom behavior promises, she actually started to tear up.

DisDadDoc
12-22-2011, 02:22 PM
Well DS had his check-in yesterday for us to go over his IEP (Improvised Education Plan) and for the most part it went very well. His teacher is awsome this year and the addition of him spending a couple of minutes each morning with with a social group to get him focused and review anything that might have gone wrong the previous day sems to have resolved a lot of issues.

We were able to break out his daily behavior chart by month and it showed a consistant improvement. At the begining of the year he was having about 50% of his days catagorized as good, it jumped up to the 60's in October, 65% in November and 80% in December:cool1:. I was pretty impresssed with that concidering the chaos that the holiday season takes on the "normal routine".

It was a bit strange, we thanked his teacher for being so strict with him and holding him to his classroom behavior promises, she actually started to tear up.

Nice! Great news! We had our PPT today as well (must be that time of year). Also went very well! And even more rewarding was how all the teachers went out of their way to tell us what an inspiration and help he has been to the other kids in special ed. Then it got pretty dusty...

tutter99
12-22-2011, 06:59 PM
Nice! Great news! We had our PPT today as well (must be that time of year). Also went very well! And even more rewarding was how all the teachers went out of their way to tell us what an inspiration and help he has been to the other kids in special ed. Then it got pretty dusty...

Good news all around, now we don't have to return their gifts!!!!

twokids0204
12-22-2011, 07:21 PM
How did I miss this entire thread until now?

Bookmarking to catch up later...

DisDadDoc
12-22-2011, 07:23 PM
How did I miss this entire thread until now?

Bookmarking to catch up later...

I goes inactive for long periods, Brian, so it probably dropped off the screen. Good alternative to the disABILITIES thread, which the mods do a good job with but can get pretty wild sometimes... :confused3

twokids0204
12-22-2011, 07:31 PM
I goes inactive for long periods, Brian, so it probably dropped off the screen. Good alternative to the disABILITIES thread, which the mods do a good job with but can get pretty wild sometimes... :confused3

Yeah - I prefer getting my info from this group - I have learned to avoid mod's as much as possible lately ;)

My son is currently timing himself on how long it will take him to run from the living room, to the refrigerator in the kitchen. So I may need some info on transferring a 7 year old from a tile floor to the emergency room with a broken leg.

DisDadDoc
03-23-2012, 06:59 AM
Bumped for PPT meeting coming up!

tutter99
03-23-2012, 12:01 PM
Bumped for PPT meeting coming up!

Hope it goes well!

DS has had a rough time since the 2nd week of January. Playing phone tag between his pediatrician and psychologist today trying to get him set up on meds. His behaviors have been showing improvement but he just can't keep it together at school anymore and we are worried about the long term damage it is having on his self esteem.

thheaton
03-23-2012, 01:38 PM
Bumped for PPT meeting coming up!

good luck, we recently had our IEP meeting went really well. she has met all her goals and we had to write all new ones.:thumbsup2

aggordon2
03-28-2012, 03:28 PM
I am glad I found this thread. One of my sons is PDD-NOS. And he can be a handfull. We were giving him medication that is usually used for ADHD but we had to stop because he was losing weight. He has a hard time focusing on the task at hand and someone (us, teachers, support staff) always has to keep his focus on what he is doing. Sometimes it can get very frustrated with this situation, but then there are times when its all worth it.

Let me stop, cause I feel like I am starting to ramble.

I am still glad I found this thread.

DisDadDoc
03-28-2012, 06:13 PM
I am glad I found this thread. One of my sons is PDD-NOS. And he can be a handfull. We were giving him medication that is usually used for ADHD but we had to stop because he was losing weight. He has a hard time focusing on the task at hand and someone (us, teachers, support staff) always has to keep his focus on what he is doing. Sometimes it can get very frustrated with this situation, but then there are times when its all worth it.

Let me stop, cause I feel like I am starting to ramble.

I am still glad I found this thread.

Welcome! Glad you found us! Hope things start to get better. Spring is tough for everyone

DisDadDoc
03-28-2012, 06:16 PM
good luck, we recently had our IEP meeting went really well. she has met all her goals and we had to write all new ones.:thumbsup2

Great news! Ours was supposed to be today (hence my day at home today), but got moved at the last minute until April 12th. Spoke to his doctor on the phone today and I think we're all set for a strategy to transition to a new school next year. Just need the school to agree ...

thheaton
03-28-2012, 08:59 PM
I am glad I found this thread. One of my sons is PDD-NOS. And he can be a handfull. We were giving him medication that is usually used for ADHD but we had to stop because he was losing weight. He has a hard time focusing on the task at hand and someone (us, teachers, support staff) always has to keep his focus on what he is doing. Sometimes it can get very frustrated with this situation, but then there are times when its all worth it.

Let me stop, cause I feel like I am starting to ramble.

I am still glad I found this thread.

welcome to the thread. feel free to ramble, sometimes it helps.

thheaton
03-28-2012, 09:06 PM
Great news! Ours was supposed to be today (hence my day at home today), but got moved at the last minute until April 12th. Spoke to his doctor on the phone today and I think we're all set for a strategy to transition to a new school next year. Just need the school to agree ...

It is sad that we have to get our strategy together ahead of time, but if you come unprepared they will run everything they can by you. We have been lucky and haven't had to fight for anything but I'm sure that will change once she hits 5 or 6 yrs old. Good luck on the 12th.

tutter99
03-28-2012, 11:22 PM
I am glad I found this thread. One of my sons is PDD-NOS. And he can be a handfull. We were giving him medication that is usually used for ADHD but we had to stop because he was losing weight. He has a hard time focusing on the task at hand and someone (us, teachers, support staff) always has to keep his focus on what he is doing. Sometimes it can get very frustrated with this situation, but then there are times when its all worth it.

Let me stop, cause I feel like I am starting to ramble.

I am still glad I found this thread.

Glad you found us too!

tutter99
03-28-2012, 11:34 PM
Well today was DS's first day on Vyvance, no complaints of headache, stomach ache, and ate all his diner so hopefully he will avoid most of the side effects. There were about a quarter of the comments there are normally on his point sheet from school and he didn't seem to have the issues being argumentative that had been getting worse.

Of course I had to spend 15 minutes on the phone with the owner of the dive center where he takes swimming lessons because his new instructor asked for him to be removed from his class because he is too worked up and not listening. Not that I am making excuses but the other 3 kids in his class are all over the place but know enough to stop themselves when the instructor says so (DS takes a bit longer to calm down).
Luckily the owner is a great guy and after I explained what is going on with DS and that we are trying medication he moved DS to a later class with only one other kid in it who he knows will not get DS worked up.:thumbsup2

aggordon2
03-29-2012, 08:43 AM
Welcome! Glad you found us! Hope things start to get better. Spring is tough for everyone
Thanks for the welcome!

welcome to the thread. feel free to ramble, sometimes it helps.
Sometimes rambling is the only thing that makes me feel better.

Glad you found us too!
Thanks!


Last night I just conked out around 7pm. I did not wake up till about 6am this morning! Does it ever get overwhelming that sleep seems to be the only answer? Well that is what happened to me last night.
Since both boys are moving into middle schools next year, we have been on the grand tour. We have been doing double duty since both of them go to different schools. Our fear is that they (NYC DOE) will place my son in a school that will not work for him and then the fight will start. We have been through this before to get him services and eventhough we know the process involved, we are not looking foward to it.

aggordon2
03-29-2012, 08:50 AM
Well today was DS's first day on Vyvance, no complaints of headache, stomach ache, and ate all his diner so hopefully he will avoid most of the side effects. There were about a quarter of the comments there are normally on his point sheet from school and he didn't seem to have the issues being argumentative that had been getting worse.

We have tried Vyvance with our son and though he had good results in school, he was not eating as much as he used to. He lost about 5 pounds when we took him off it for a while to get his weight back up.
What dosage is he on right now? Our son started with 20mg, then when up to 30mg, that was when he started losing weight.

tutter99
03-29-2012, 09:18 AM
We have tried Vyvance with our son and though he had good results in school, he was not eating as much as he used to. He lost about 5 pounds when we took him off it for a while to get his weight back up.
What dosage is he on right now? Our son started with 20mg, then when up to 30mg, that was when he started losing weight.

They started him on 20mg, because his psychologist and his pediatrician decided to drag their feet getting in touch with each other last week, we only got the prescription on Tuesday night and started him yesterday. Today is his last day before Spring Break so we won't get a really good gauge of how it is doing until he is back a few days after the break. We are going to keep him on it over the break just to gt him used to it and any possible side effects.

Lucky for us he is a really good eater, so hopefully he'll keep his weight up.

Did your son have any side effects from it other than the weight loss? Do you think it was his metabolism speeding up from the medication or did he lose his appetite?

NWDAD
03-29-2012, 10:41 AM
Just found this thread, I have 2 kids with RAD, FAS, ODD and others, alphbet soup. They are both over 18 now and out of the house but I have 12 years experience with schools. So if I can be of any help feel free to ask.

marcgiu
04-12-2012, 11:43 AM
sorry not been on for a while - hope all are well

Booked a trip over xmas to WDW and DCL - Has anyone been on the DCL with their Autistic Child , if so were there any specific challenges?

DisDadDoc
04-14-2012, 06:32 AM
sorry not been on for a while - hope all are well

Booked a trip over xmas to WDW and DCL - Has anyone been on the DCL with their Autistic Child , if so were there any specific challenges?

We'd like to, but our son is terrified of the idea of it, so don't know if we'll ever get him there

Urugami
04-16-2012, 04:56 PM
My son has been on Vyvance for 5 or 6 months now. Started out at 20mg, moved up to 30 after a couple of months, and just started him on 40mg a couple of weeks ago.
It certainly does seem to help him focus and obey a bit more (pity it's mostly when he's not around us :) ), so in general it's doing a lot of good for him, and letting his teachers see a little of what he can really do, but he's still a struggle most days, especially after it wears off.
We think it's been interfering with his appetite some. He's never really eaten a LOT, so even though he's quite tall for a 6YO, he's skinny. That being said, since he's been on the meds, he hasn't been eating much of his lunch, and dinner is ususally a struggle to get him to eat what we think he should. If we keep at it after he says he's done, we can get him to eat more, so thankfully he's not losing any weight, but personally, I'd like to see some more meat on his bones, if you follow me.

Glad to see this thread here, and hoping I can get and give some help or reassurance.

tutter99
04-17-2012, 02:04 PM
My son has been on Vyvance for 5 or 6 months now. Started out at 20mg, moved up to 30 after a couple of months, and just started him on 40mg a couple of weeks ago.
It certainly does seem to help him focus and obey a bit more (pity it's mostly when he's not around us :) ), so in general it's doing a lot of good for him, and letting his teachers see a little of what he can really do, but he's still a struggle most days, especially after it wears off.
We think it's been interfering with his appetite some. He's never really eaten a LOT, so even though he's quite tall for a 6YO, he's skinny. That being said, since he's been on the meds, he hasn't been eating much of his lunch, and dinner is ususally a struggle to get him to eat what we think he should. If we keep at it after he says he's done, we can get him to eat more, so thankfully he's not losing any weight, but personally, I'd like to see some more meat on his bones, if you follow me.

Glad to see this thread here, and hoping I can get and give some help or reassurance.

We started DS on 20mg and it had very little affect, which from what we read is pretty common. Over Spring break they bumped him up to 40mg (so we could use up the 20mg pills we had left. The first week back from Spring Break he had more good days at school than bad. The mornings were good but after lunch it was the same old problems. When we spoke to the pediatrician towards the end of last week and they thought because he eats a ton and still only has a BMI of 10 his metabolism was eating up the medication long before school was over. They decided to bump him up to 50mg and although we were skeptical he did great yesterday, we'll have to see how the rest of the week goes.

He is having stomach pains and is definitely eating less but from what we've read it should taper off by the end of the week.

Urugami
04-17-2012, 05:20 PM
They decided to bump him up to 50mg and although we were skeptical he did great yesterday, we'll have to see how the rest of the week goes.
He is having stomach pains and is definitely eating less but from what we've read it should taper off by the end of the week.
It's hard to tell with our DS whether it's true or not, but he does say his stomach hurts around dinner time (we give him the meds before school, probably like you do), so we doubt it's from the Vyvance. Personally, I think it's more likely an excuse trying to get out of eating so he can go play with something.

tutter99
04-18-2012, 11:31 AM
It's hard to tell with our DS whether it's true or not, but he does say his stomach hurts around dinner time (we give him the meds before school, probably like you do), so we doubt it's from the Vyvance. Personally, I think it's more likely an excuse trying to get out of eating so he can go play with something.

If you do a search on vyvance and stomach ache it is pretty common. I kind of had your line of thinking that if he is taking it in the morning it would be worn off by dinner but I think it might be something in the drug causing it not related to the stimulant part. The point I saw on another ADHD board similar to that was that one of the other side effects is insomnia (haven't seen any of that) which wouldn't make sense either if you were giving the pill in the morning.

Have you ever noticed you have a day where it is like the pill was a dud? Yesterday DS had a rough day (not terible, but rough) and the behaviors were like those he had before starting the meds. The weird part was he didn't complain about his stomach and ate like a horse at dinner. :confused3

Urugami
04-18-2012, 05:38 PM
Have you ever noticed you have a day where it is like the pill was a dud?
It's really hard for me to tell, since on weekdays I don't see him until about 5PM, at the earliest. Plus, on weekends, DW is prone to (read: always has) giving him reduced doses. i.e., now that he's on 40mg, he's been getting some of the remaining 20s; before that, we were cutting 30mgs in half and giving him those. So naturally I don't see much of an effect then, and I don't see how that helps his body/brain stabilize into some kind of equilibrium, if that makes sense.