DIS Dads disABILITIES Thread

[DisDadDoc]

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]

Placeholder.

 

[ClearScreen]

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]

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]

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.]

Will be glad to support and help in any way...

 

[Rental01]

I think this is a great idea.

/me signs up!

 

[tutter99]

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]

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]

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]

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

 

[AJRitz]

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

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]

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]

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!

 

[Singledad]

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?

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

 

[DisDadDoc]

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?

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.

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]

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!).

Yeah, I can see me saying that about some of what DD does.

 

[DisDadDoc]

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

 

[tutter99]

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?

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

Welcome! and thanks for stopping by.

 

[marcgiu]

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