Speechless Close To Home: Real Families, Real IEPs

[Drogo]

A small talk thread for those who know and love extraordinary, differently-abled children and adults. 

[neuromom]

Thanks, Drogo! I knew what I was posting was not related to the episode, but I didn't know where else to put it. This is the first show that I've seen in...forever..that has some meaning for me.

[Big Mother]

tHANKS SO much for creating this thread; bc I'm finding myself commenting on every thread about my own experiences as a SN parent.

[dmmetler]

I'm finding this interesting because I suspect I'm a different generation than a lot of ya'll are. I was, quite literally, the first kid with neuromotor disabilities mainstreamed in my school district following PL 94-142. I'm classified as mild/moderate (basically, I can do all major life functions, but am considered impaired in all of them)-in my generation, a big part of being mainstreamed was being able to get by with limited assistance and without the school having to change too much. 

 

i think one reason why the show may ring truer to me than it seems to for some of ya'll is that while I've taught and worked in schools under full inclusion, JJ's position is very much like what mine was, and that fight for independence when your parent has spent your entire life fighting for you to have a seat at the table at all is very real. I hope the show sticks around enough for JJ to transition to college. 

[bros402]

I majored in Special Education in college. Apparently it was stuck in my brain that PL 94-142 was the Education for All Handicapped Children Act. I'm considered disabled by the SSA - disabled enough to only have a review for SSI every 5 years now.

[bros402]

12 hours ago, neuromom said:

 There definitely is training for feeding and toileting. But it's all done on the job after the person is hired.   Of course for true medical issues, and medically fragile children, there would be an actual nurse assigned. And that person is a nurse full-time .  At least that's how it is in California .  My son has some significant disabilities,  But none are medical.  However, there are several students at the school that arrived with their full-time nurse that stays  with them  throughout the school day. 

Here inn California , Regional centers are nonprofit private corporations that contract with the Department of Developmental Services to provide or coordinate services and supports for individuals with developmental disabilities.  They assist with providing services, therapy and other things that may not be provided through insurance.   I was able to get a tub lift for my son through the regional center because Kaiser denied the claim.

 

Ahhh, okay. We have a county disability offices here and they contract some services out to groups.

[neuromom]

8 hours ago, bros402 said:

Ahhh, okay. We have a county disability offices here and they contract some services out to groups.

Our county disability offices (which we call the Regional Centers) do contract out for some things also. I'm not sure about groups, but I know they contract individuals. Different types of therapists , like PT, occupational therapy, orientation & mobility and behaviorists , etc, can be contracted out to individuals. 

Come to think of it, the school district contracts out the same way. My son has PT, OT and O&M, and all are on contract through the distinct. The problem we can run into with that is if the particular individual therapist isn't working out with my son. Its a "Maya worthy" fight to get another one. 

[bros402]

14 hours ago, neuromom said:

Our county disability offices (which we call the Regional Centers) do contract out for some things also. I'm not sure about groups, but I know they contract individuals. Different types of therapists , like PT, occupational therapy, orientation & mobility and behaviorists , etc, can be contracted out to individuals. 

Come to think of it, the school district contracts out the same way. My son has PT, OT and O&M, and all are on contract through the distinct. The problem we can run into with that is if the particular individual therapist isn't working out with my son. Its a "Maya worthy" fight to get another one. 

Yeah, districts have a bunch of doctors on retainer - check the board of ed meeting minutes - they might have more people on contract. The school district I attended, for example, had my pediatric neurologist on contract for many years (I didn't know he was one of their contracted neurologists, either) and they had like 5 other neurologists, too.

When I was in school, I remember some of my classmates would have OT & PT outside of what the school provided - I imagine the district and private OT/PT would talk to each other from time to time.

What is O&M? I'm not familiar with that. Is it something involving mobility? What kind of things are done in/with it?

[neuromom]

20 hours ago, bros402 said:

Yeah, districts have a bunch of doctors on retainer - check the board of ed meeting minutes - they might have more people on contract. The school district I attended, for example, had my pediatric neurologist on contract for many years (I didn't know he was one of their contracted neurologists, either) and they had like 5 other neurologists, too.

When I was in school, I remember some of my classmates would have OT & PT outside of what the school provided - I imagine the district and private OT/PT would talk to each other from time to time.

What is O&M? I'm not familiar with that. Is it something involving mobility? What kind of things are done in/with it?

Ooops...sorry..O&M is orientation and mobility. It's for the blind and visually impaired. They train him to maneuver through his environment as independently as possible. That includes using a cane. 

[bros402]

3 hours ago, neuromom said:

Ooops...sorry..O&M is orientation and mobility. It's for the blind and visually impaired. They train him to maneuver through his environment as independently as possible. That includes using a cane. 

Cool. Thanks.

[kathyk24]

On ‎10‎/‎1‎/‎2016 at 8:34 PM, dmmetler said:

I'm finding this interesting because I suspect I'm a different generation than a lot of ya'll are. I was, quite literally, the first kid with neuromotor disabilities mainstreamed in my school district following PL 94-142. I'm classified as mild/moderate (basically, I can do all major life functions, but am considered impaired in all of them)-in my generation, a big part of being mainstreamed was being able to get by with limited assistance and without the school having to change too much. 

 

i think one reason why the show may ring truer to me than it seems to for some of ya'll is that while I've taught and worked in schools under full inclusion, JJ's position is very much like what mine was, and that fight for independence when your parent has spent your entire life fighting for you to have a seat at the table at all is very real. I hope the show sticks around enough for JJ to transition to college. 

I'm 49 so I was the first generation of kids with disabilities to benefit from inclusion. I've also known people who were nonverbal like JJ who had to prove their intelligence. I also had to switch schools many times due to inaccessibility as JJ has.

[neuromom]

In regards to what Empress1 said in the episode thread..these people need to keep their house clean for JJ to get around. It's not the biggest house, and he's in a wheelchair. My son CAN walk, but he has visual impairments. So I keep EVERYTHING off the floor. All the furniture and tables are pushed up against the walls, so,he has the biggest space to manuever around. And if he falls, he won't hit anything. 

Jimmy's "bulletproof " speech was right on the money though. There are things that used to bother me, and now I'm likely to just say "f#%% it" - I just don't have the time and energy for stupid stuff. Like what people think.

Edited October 7, 2016 by neuromom

[bros402]

3 hours ago, neuromom said:

In regards to what Empress1 said in the episode thread..these people need to keep their house clean for JJ to get around. It's not the biggest house, and he's in a wheelchair. My son CAN walk, but he has visual impairments. So I keep EVERYTHING off the floor. All the furniture and tables are pushed up against the walls, so,he has the biggest space to manuever around. And if he falls, he won't hit anything. 

Jimmy's "bulletproof " speech was right on the money though. There are things that used to bother me, and now I'm likely to just say "f#%% it" - I just don't have the time and energy for stupid stuff. Like what people think.

I was very confused about how they had stuff on the floor, too.

[Lava VaVoom]

Love this show.  It reminds me of life with my youngest brother, who died April 1st. 

[Crs97]

 Any real life pet peeves that you're hoping the show will address? My biggest one is people who use the wheelchair ramp as a loading zone and park right in front of it. Usually the medical transport vehicles are the worst offenders. You park to take your child into a doctor's appointment only to find that the ramp is blocked. How difficult is it to pull your car ahead of the ramp so that others can use it while you are helping your passenger exit?  Drives me crazy and I would like to live vicariously through Maya's rant.

[bros402]

2 hours ago, Crs97 said:

 Any real life pet peeves that you're hoping the show will address? My biggest one is people who use the wheelchair ramp as a loading zone and park right in front of it. Usually the medical transport vehicles are the worst offenders. You park to take your child into a doctor's appointment only to find that the ramp is blocked. How difficult is it to pull your car ahead of the ramp so that others can use it while you are helping your passenger exit?  Drives me crazy and I would like to live vicariously through Maya's rant.

I like how they dealt with "inspiration porn" in tonight's episode

I want them to have an episode that is an IEP meeting. I want to see how accurately they display the meeting. It'll probably be Maya goes in expecting a fight, then they agree to everything she asks for, even things she is just asking for to test them, then she has to show them how to put it in the IEP.

Edited October 13, 2016 by bros402

[neuromom]

9 hours ago, bros402 said:

I like how they dealt with "inspiration porn" in tonight's episode

I want them to have an episode that is an IEP meeting. I want to see how accurately they display the meeting. It'll probably be Maya goes in expecting a fight, then they agree to everything she asks for, even things she is just asking for to test them, then she has to show them how to put it in the IEP.

Yes yes yes! I imagine we WILL get the inevitable IEP meeting! I can't wait! And I imagine Maya won't have too much trouble getting what she wants. It seems the principal , as inexperienced as she is with all these issues, is open to learning how to do things right.

[alexvillage]

On 10/13/2016 at 0:13 AM, Crs97 said:

 Any real life pet peeves that you're hoping the show will address? My biggest one is people who use the wheelchair ramp as a loading zone and park right in front of it. Usually the medical transport vehicles are the worst offenders. You park to take your child into a doctor's appointment only to find that the ramp is blocked. How difficult is it to pull your car ahead of the ramp so that others can use it while you are helping your passenger exit?  Drives me crazy and I would like to live vicariously through Maya's rant.

Yes. The point of view of the disabled person, instead of the family/parent. And that the point of view of the disabled person prevails. Maybe bringing in a disabled adult that JJ can relate to as he grows up.

I say that because usually things get very bad really fast when parents (mostly, usually) think they know everything that the disabled child needs and refuse to listen to adults who have very similar experiences, because it might not fit the usual perception and assumptions of what disability is. There is a lot of defensiveness.

Inspiration porn is always a good theme. It happens way too often.

Going deeper in the relationship between Kenneth and JJ - black guy, disabled person - explore the disparities and inequalities disabled kids who are also minorities face, the lack of supports.

[bros402]

11 hours ago, alexvillage said:

Yes. The point of view of the disabled person, instead of the family/parent. And that the point of view of the disabled person prevails. Maybe bringing in a disabled adult that JJ can relate to as he grows up.

I say that because usually things get very bad really fast when parents (mostly, usually) think they know everything that the disabled child needs and refuse to listen to adults who have very similar experiences, because it might not fit the usual perception and assumptions of what disability is. There is a lot of defensiveness.

Inspiration porn is always a good theme. It happens way too often.

Going deeper in the relationship between Kenneth and JJ - black guy, disabled person - explore the disparities and inequalities disabled kids who are also minorities face, the lack of supports.

An episode from JJ's POV - or at least partly from his POV, would be really interesting.

A disabled adult would be interesting. The adult wouldn't even have to be similar in severity to him, just having a disabled adult be there for him would be a great thing.

[neuromom]

Quote

   4 HOURS AGO,  MAMA NO LIFE SAID: 

Yes, what would I know?  As a single mother of two, making a teacher salary, my autistic son was not able to qualify for any benefits until he was 18 and showed no income of his own.    4525 for two parents isn't much, you know?  Roughtly 54K for a family of 5.  And then not even that when you're paying for meds/therapies/etc. Which was my point.  Why kill yourself for two small paying jobs when you have to constantly ask off for dr appts, therapy, etc when you're just as well off not working?  I've known lots of people give up the stress of working so they can take care of their special needs kids. They give up vacations, new clothes and furniture....again, sounds pretty much like this show.

 

And SSI is supplemental income for the disabled.  No, It's not the same as SS disability but I think it's clear to all of us that JJ didn't get hurt on the job.

I could do this all day......

(I hope I copied and pasted correctly!)  I hear you , Mama No Life! I gave up a great paying job because I have a son with severe disabilities, and it was getting too difficult for my parents (in their 70s ) to babysit while I worked. And to pay for help, it would cost most of my paycheck! It doesn't pay to work if you ARE a full time caregiver. I am also a single mom of two and my ex does nothing for the special kid except basic child support. 

My full time job is caring for my kiddo. But I do work what is an allowable part time job to make some extra. Because medical (provided by his dad) AND medi-cal don't provide everything. Special therapies are out of pocket. Oh, and my son doesn't qualify for SSI. I dip into my retirement to pay for things. People would be surprised how much of my gross income goes to medical expenses. 

This show is pretty realistic from my POV. 

[Mama No Life]

Absolutely.  Great post neuromom.....

[bros402]

16 hours ago, Mama No Life said:

Yes, what would I know?  As a single mother of two, making a teacher salary, my autistic son was not able to qualify for any benefits until he was 18 and showed no income of his own.    4525 for two parents isn't much, you know?  Roughtly 54K for a family of 5.  And then not even that when you're paying for meds/therapies/etc. Which was my point.  Why kill yourself for two small paying jobs when you have to constantly ask off for dr appts, therapy, etc when you're just as well off not working?  I've known lots of people give up the stress of working so they can take care of their special needs kids. They give up vacations, new clothes and furniture....again, sounds pretty much like this show.

 

And SSI is supplemental income for the disabled.  No, It's not the same as SS disability but I think it's clear to all of us that JJ didn't get hurt on the job.

I could do this all day......

I was not attacking you - I was just stating some stuff - as a lot of people confuse SSI and SSDI, not saying that you would, but a lot (more than you think) of people conflate them. I didn't get SSI until I was 20 (applied a month and a half after turning 18, though), because my parents were never told about it - I received one SSI check a few months after I was born, then nothing else, so my parents assumed that I was ineligible for it after that. There was a period of time there where my parents could've used a SSI check, but nobody told them that SSI was a thing for disabled children. New vacations, new clothes, new furniture - those are all luxuries that a lot of people don't get. I didn't go on a vacation until I was 11, most of our clothes were bought in the clearance section (Or with coupons, coupons are great!) and I think the first non garage sale piece of furniture we got was a couch we got when I was 13 - it was a little while after the bill we still had from my birth was forgiven, around when we got my braces - my dad put the braces on the home equity line of credit, what was a few hundred bucks added onto it when it was $4000 for the braces (I had an overbite, an underbite, and a crossbite - made it more expensive than normal for the standard metal braces).

[alexvillage]

Food for thought.

I hate the term and know many disabled people who were in Special Ed, called "special needs" who also hate it. Once stigmatized as "too severe for mainstream*" , given the accommodations, they thrived.

http://www.startingwithjulius.org.au/he-aint-special-hes-my-brother-time-to-ditch-the-phrase-special-needs/

 

*don't like the premise of "mainstream" either. It should be inclusion all the time.

yes, I know the system is broken. It is still wrong. 

[neuromom]

2 hours ago, alexvillage said:

Food for thought.

I hate the term and know many disabled people who were in Special Ed, called "special needs" who also hate it. Once stigmatized as "too severe for mainstream*" , given the accommodations, they thrived.

http://www.startingwithjulius.org.au/he-aint-special-hes-my-brother-time-to-ditch-the-phrase-special-needs/

 

*don't like the premise of "mainstream" either. It should be inclusion all the time.

yes, I know the system is broken. It is still wrong. 

My kiddo has "severe disabilities." I have used the term "special needs" and "disabled " and "developmentally delayed"  (and probably a few others..except "handicapped") depending on the company I'm with. Because people get so sensitive over the labels. And I live in PC California...and it drives my bonkers! I used to get frustrated over it all. I even asked a social worker "what term am I supposed to use for MY kid?" She said "you're the mom, you get to choose." So..alrighty then..it changes. 

[bros402]

There is a lot of debate over the various labels. Ultimately, it is down to the person (or their parent). Some like person first language, while some find it offensive.

Also, mainstreaming has its purpose - inclusion is not for every student. There are some students who need a self contained placement. There is no one-size-fits-all placement. I am torn over the term special needs - I would say it is a very situational term. As long as they don't use the r word or call me a cripple (I'm not even in a wheelchair. Not saying that to justify the use of that term ever, but, uhhh, yeah), I am usually okay with whatever term they choose when referring to me.

Edited November 8, 2016 by bros402

[alexvillage]

Inclusion is not for everyone because not everyone is willing to include. Maybe some students will prefer not to be in a inclusive class. The problem is that the default is to segregate first (followed by not presuming competence, not investing in the child, not caring about understanding the support needs). If included, the disabled child, and the non-disabled peers, will benefit. That's been studies and reviewed. Universal design is about that. 

http://ollibean.com/universal-design-and-disability-acceptance/

Quote

And I live in PC California...and it drives my bonkers! I used to get frustrated over it all. I even asked a social worker "what term am I supposed to use for MY kid?" She said "you're the mom, you get to choose." So..alrighty then..it changes. 

The problem with PC is that it can be extremely ableist. But I can see ow hard it is when you are dealing with people who learn about disabilities from a set of "how to do" guidelines (not that social workers cannot be good and know things, or even be disabled themselves. But their work usually includes following guidelines on how to speak, what words to use, etc). I am for using the least stigmatizing: disabled, developmentally delayed. These terms tell you who the person is. And by saying the word(s), we de-stigmatize it (herd though, because of ableism). Unless one is ashamed of being disabled, or having a disabled loved one. 

Good article here.

http://ollibean.com/person-first-language-and-ableism/

[neuromom]

Those are good articles, Alexvillage. The second one is especially pertinent to me. Its nice to have an article that supports my way of thinking. It is so much easier to say "disabled". I never really liked the term "special needs", but here in CA, they tend to use that term a lot. Even as the MOM, I get weird looks if I use "disabled". But seriously, that is what my kid IS. And it's not a negative term. It's a descriptive term. And he has disabilities that make it impossible (currently) for full integration. He is getting the one on one attention that he needs though. And he is constantly growing and changing and gaining new skills.

All the semantics tend to make my head spin. My son is disabled. I am a mom of a disabled kid. And as long as you speak to my kid with love and respect, he doesn't focus so much on the word, as on the feelings behind it. 

[possibilities]

I always prefer "disabled" to any of the euphemisms, because I think the attempt to pretty things up comes from an idea that the situation is embarrassing, and that the other terms are kind of whitewashes. If you aren't ashamed of it, why not just call it like it is?

I've had friends and allies who have different takes on it, though-- people who are genuinely self-respecting and not just condescending sugar-coaters, so I've decided the terminology is not as important to me as the actions people do or don't take. Actions speak louder than words sometimes.

[Big Mother]

So coincidental! On Wednesday I went to my local autism moms' support group. Though we don't drink. It's a brunch, so we have a delicious spread, laugh and cry, and catch up on each others' lives. It's held in a neutral place. It's a great break from reality and to get resources. It actually made me happy that Maya already has such a group in her new neighborhood.

[bros402]

3 hours ago, neuromom said:

My son with multiple disabilities is not able to do buttons or zippers. Though he is cooperative, I actually do have to dress him. And it's difficult for ME, while facing him , to button buttons or do pants with zippers. Things are worse when he can't stay still. It took several years , and severest gentle "hints" to get family and friends to buy easy pullover shirts and sweat-type pants. My ex husband was the worst! (His dad) he'd buy the "stylish" button/zipper pants and jeans that HE would wear...then wonder why our son never wore them.

I can do zippers - if it is something on pants, I can do those, I just have to... clear the way first, to avoid anything painful happening. With something like a coast, I have to look at it or I might miss the part that you put the zipper in to secure it or however you'd phrase it. I've been looking at magnetic dress shirts lately, but they are *expensive* (like $60 a shirt) and they look so... old. Like the kind of dress shirt you would see on a 70 year old.

 

5 hours ago, Big Mother said:

So coincidental! On Wednesday I went to my local autism moms' support group. Though we don't drink. It's a brunch, so we have a delicious spread, laugh and cry, and catch up on each others' lives. It's held in a neutral place. It's a great break from reality and to get resources. It actually made me happy that Maya already has such a group in her new neighborhood.

Remember in one of the episodes, she mentioned how she had a mom's group from one of JJ's earlier schools? Maybe it is that group, since it seems like a regular thing, the mom's group.

[alexvillage]

RE: getting dressed, what to wear

I understand that the conversation is in relation to JJ, and maybe more specifically to disabled people who are similar to JJ, in the supports they need.

While I am all for teaching, allowing the person do as much as they can by themselves, I think it is important to remember that putting too much emphasis on this idea of "independence" is not necessarily good for the disabled person.

Some disabled people will not, never, be able to do anything (physically) independently. They will always need help. If we start "valuing" more the ones who are more "independent", we forget that autonomy, choice, are much more important.

I know several people who really on support for all those basics things. Yet, they are leaders in the disability community, they are activists. Many have been guests at events in places like the White House. Check the disability history: Ed Roberts.

I am not chastising anyone who commented, just throwing this out there because this would also be a good theme for the show: autonomy is much better than the supposed independence. Doing things "correctly" and "following steps" is supposed to teach more than one "goal". It is supposed to teach them how to think for themselves, how to advocate for themselves. They will need that. If they cannot learn the first part (goal), that's ok. The second part (advocacy) is the one that will serve them better anyway.

[neuromom]

Bros402 is probably in a much better position than my son in regards for advocating for himself. My son has multiple disabilities and needs assistance with everything. And he is not able to communicate effectively to be able to advocate for himself. I am his 24/7 caregiver...and his advocate.

Being able to advocate for himself would be wonderful....down the road (he's almost 12) . But for now, our goals are a little more ...modest. I strive to assist him in HIs desire for independence and autonomy , and allowing him choices. By the way, he chooses the looser fitting pants and the shirts sans buttons..because it allows him more freedom of movement as he gets around.

[bros402]

2 hours ago, neuromom said:

Bros402 is probably in a much better position than my son in regards for advocating for himself. My son has multiple disabilities and needs assistance with everything. And he is not able to communicate effectively to be able to advocate for himself. I am his 24/7 caregiver...and his advocate.

Being able to advocate for himself would be wonderful....down the road (he's almost 12) . But for now, our goals are a little more ...modest. I strive to assist him in HIs desire for independence and autonomy , and allowing him choices. By the way, he chooses the looser fitting pants and the shirts sans buttons..because it allows him more freedom of movement as he gets around.

Yeah, I am able to advocate for myself when my anxiety doesn't get the better of me. I usually do better when I can write a letter - had to do that a few times in college - the university I went to was 3 hours away from being out of compliance with FERPA.

 

19 hours ago, alexvillage said:

RE: getting dressed, what to wear

I understand that the conversation is in relation to JJ, and maybe more specifically to disabled people who are similar to JJ, in the supports they need.

While I am all for teaching, allowing the person do as much as they can by themselves, I think it is important to remember that putting too much emphasis on this idea of "independence" is not necessarily good for the disabled person.

Some disabled people will not, never, be able to do anything (physically) independently. They will always need help. If we start "valuing" more the ones who are more "independent", we forget that autonomy, choice, are much more important.

I know several people who really on support for all those basics things. Yet, they are leaders in the disability community, they are activists. Many have been guests at events in places like the White House. Check the disability history: Ed Roberts.

I am not chastising anyone who commented, just throwing this out there because this would also be a good theme for the show: autonomy is much better than the supposed independence. Doing things "correctly" and "following steps" is supposed to teach more than one "goal". It is supposed to teach them how to think for themselves, how to advocate for themselves. They will need that. If they cannot learn the first part (goal), that's ok. The second part (advocacy) is the one that will serve them better anyway.

Yeah, with students with disabilities, it's all down to getting whatever the student can try to achieve into their IEP - for some students, they might keep them until 21 - I wouldn't be surprised if they have JJ take an extra year, even if it is just to keep the series in high school for another year.

For me, independence isn't much of a possibility now. Before, I might've been able to do it with some supports - I can't use a fork & knife to cut food, which limits what I can eat, so when I am alone, I usually just microwave things, or have food I can just stick a fork into, hold the fork up, and eat what is on the fork.

An important thing that some people don't consider when thinking about people with disabilities is that everyone has a different level of independence - some people will always need help with something. Heck, even average people need help with things - everyone isn't a plumber or a handyman, they need help with things like that. It reminds me of the quote by Rick LaVoie (I better remember this quote, my education program didn't have much in the way of multimedia, so we watched the F.A.T. City workshop video like 10 times in 2 years), "Fairness means that everyone gets what he or she needs."

[Big Mother]

I'm only partly through the Thanksgiving episode but I have some comments. I was able to relate to how the family had Kenneth over and are relating to him like a family member. We've had MANY MANY caregivers over the years and they really end up becoming part of the family; they are privy to the drama, theyr'e here when family stuff happens, and they're brought up to speed. As for the douchey relatives; I'm very fortunate that everyone in my family is very supportive and no one would act as awfully as the DiMeo's did; but my family tends to be more in the 'uncomfortable' / awkward / not sure what to say / tears welling up in their eyes / "I dont know how you do it" kind of camp. We've stopped bringing our son to family events and leave him at home with a caregiver or send him to a respite family for holidays, since he doesn't behave at all and it makes it impossible for us to participate in holidays. (he likes it better this way too).

[Zanne]

On 11/7/2016 at 2:09 PM, alexvillage said:

Food for thought.

I hate the term and know many disabled people who were in Special Ed, called "special needs" who also hate it.

It depends upon the situation, the era, etc. My district is currently undergoing a rebranding and instead of Special Education, it is now Special Services. They're pushing the person first identifiers, such as "a student with autism" rather than an "autistic student" and so on. There is no way to please everyone with one all-encompassing, acceptable phrase. Just as with gender identifiers, the best way to get what you want is to tell people when they start talking about it.

[bros402]

The district I attended had the LDT-Cs under the banner of Special Services since at least the early 1990s - Director of Special Services, office of special services, stuff like that. Self contained was used for self contained classes, etc.

The kids, on the other hand, would call it special ed, special classes, or [Teacher]'s class. My district mainstreamed as much as possible when I was a student (I was in Kindergarten in the 1995-1996 school year), so the general education students were familiar with students with disabilities. When I was in my education program, some of my classmates had never had a student with a disability in any of the K-12 classes - when I asked them, they would usually say one of two things: "Oh, they were in their own classes so they didn't interrupt our classes." or "The district just sent all of them to another school."

The people in my education program were all going for a BA in Special Education (which gave us a General Education certification (PreK-3, K-5, K-5 & 5-8, 5-8, or K-12) and a Teacher of Students With Disabilities certification), too. Most of them, even at the end of the program, couldn't name more than 1-2 things a teacher might notice that could indicate a student might have ADHD (And they were all the stereotypical "oooh! Shiny!" stuff).

[alexvillage]

Quote

It depends upon the situation, the era, etc. My district is currently undergoing a rebranding and instead of Special Education, it is now Special Services. They're pushing the person first identifiers, such as "a student with autism" rather than an "autistic student" and so on. There is no way to please everyone with one all-encompassing, acceptable phrase. Just as with gender identifiers, the best way to get what you want is to tell people when they start talking about it.

True, anything coming from agencies, schools, etc usually use PFL - and sometimes go as far as demanding that everyone uses PFL. My friends is Autistic and we were talking to someone from the state when my friend typed using IFL. The woman corrected her saying that "the correct way is...(PFL)". 

I don't have a disability diagnosis but I always use IFL because all my disabled friends use it. If someone "corrects" me I have a few comebacks and one of them is from an article I shared: "a need is not special if everyone needs it"

[OrigamiNightmare]

I'm not sure this the greatest place to put this, but it is important. I love the show and binge watched the whole thing in 2 days. I remember the 1st time I saw someone with CP (like me) was on The Facts of Life. It was one of those "very special episodes".

http://www.aapd.com/take-action-to-save-the-ada/

They're trying to weaken the Americans with Disabilities Act (ADA). I wish this were bigger news out there!

[bros402]

22 hours ago, OrigamiNightmare said:

I'm not sure this the greatest place to put this, but it is important. I love the show and binge watched the whole thing in 2 days. I remember the 1st time I saw someone with CP (like me) was on The Facts of Life. It was one of those "very special episodes".

http://www.aapd.com/take-action-to-save-the-ada/

They're trying to weaken the Americans with Disabilities Act (ADA). I wish this were bigger news out there!

As far as I can see, it looks like no action was taken on it? https://www.congress.gov/bill/114th-congress/house-bill/3765/actions

[OrigamiNightmare]

That's great news!

[OrigamiNightmare]

http://www.rawstory.com/2016/12/keep-them-in-diapers-leaked-audio-allegedly-reveals-michigan-mayor-cruelly-mocking-disabled-people/

http://www.theeagle.com/news/schools/report-special-education-students-denied-services-in-texas/article_84cff21a-78a7-11e6-a881-13748f083726.html

Arrrgh!

[Crs97]

We lived in Texas, but moved after the kids were born.  A lot of my family is in education and have repeatedly told us that we can never move back.  My mom has been emailing the reporter who broke the story to thank him for shining a spotlight on a terrible situation.

[neuromom]

Ugh! Awful! I didn't realize TX was so bad! I'm in CA, and it's "no great shakes" here either, but I do believe it's generally better than TX. Our issue locally is that my city is a middle class/working class city that is right next door to the "upper class" university city. They "ship out" their most severe special ed kids - who end up in OUR public schools. They do this so it doesn't affect their overall test scores, which are pretty high. Meanwhile, our public schools are rated more "poorly" because we have a lot more special needs kids, as well as a high percentage of kids who are "English as a second language". All this affects test scores, which are not the fault of the many great caring teachers we have.

[bros402]

I have not heard good things about Texas with regards to students with disabilities.

NJ is sort of... interesting - we have the highest autism rate in the nation - so, a lot of schools have been started over the last decade to help with it. Some are private schools - but one is a magnet school started by a few counties banding together - it covers students 3-21.

However, spots in this magnet are coveted - they usually try to have students stay in their home districts as long as possible, so they can take the most severe cases.

Where coverage can be lacking is learning disabilities. There's a school two towns over that is a private school for students with emotional disabilities. Like 20 miles south of me is a school that is for students with multiple disabilities. There's a school for students with autism near it, too. Districts here try to ship out the most severe cases of whatever as quick as they can, they'd rather pay the cost of OOD placement than try to help the students. They tried to pressure my parents when I was in PreK and K to get me sent to the school for students with multiple disabilities (Which costs something like $85,000 a year) because they did not think their teachers could help me.

First grade rolled around, I had a massive seizure, then I started to make gains academically.

[neuromom]

Bros402 ..did the seizure help you???  After 7 years of being seizure free, my son started having occasional seizures last winter, about the time he hit puberty. And the seizures seem to precede some sort of brain growth and acquisition of new skills. Like the brain is rewiring itself..quite amazing.

Edited December 17, 2016 by neuromom

[alexvillage]

20 hours ago, OrigamiNightmare said:

http://www.rawstory.com/2016/12/keep-them-in-diapers-leaked-audio-allegedly-reveals-michigan-mayor-cruelly-mocking-disabled-people/

http://www.theeagle.com/news/schools/report-special-education-students-denied-services-in-texas/article_84cff21a-78a7-11e6-a881-13748f083726.html

Arrrgh!

That's exactly the kind of thing that kills disabled people. It starts with the words, the dehumanization, than a parent murders her son and gets "involuntary manslaughter" with time served (3 1/2 years). The prosecutor thought she deserved compassion. Nobody talks about the kid, because he is blamed for the murderer's "suffering".

Seriously, for anyone who bothers to learn history, this is how the holocaust began. I have no problem calling parent murderers nazis. 

 

And yes, Texas is a mess. Parents who are fighting are not allowed to speak at the hearings because they get cut off.

[neuromom]

4 hours ago, alexvillage said:

That's exactly the kind of thing that kills disabled people. It starts with the words, the dehumanization, than a parent murders her son and gets "involuntary manslaughter" with time served (3 1/2 years). The prosecutor thought she deserved compassion. Nobody talks about the kid, because he is blamed for the murderer's "suffering".

Seriously, for anyone who bothers to learn history, this is how the holocaust began. I have no problem calling parent murderers nazis. 

 

And yes, Texas is a mess. Parents who are fighting are not allowed to speak at the hearings because they get cut off.

Yes yes Yes! Omg!  I think you're the first person ever that I have seen bring up the holocaust in regards to disabled people.  I have been trying to educate people myself for years and Ithey don't want to listen. So you and I can set our little table alone together  ....

 People just don't understand history. As for me, I am totally frightened by the fact that we have a very strong Eugencis movement already in place in our country.  And because people don't understand history, they are easily fooled into buying into it because it's sold under other names.  Even though I try to engage in conversations about it, people generally don't want to. All I can do is just be "awake"  in regards to what is going on around me so that I can best advocate, and protect, my son. 

 And I am fortunate in that my son attends a special school and I generally don't have to "fight" for anything.   The school is very supportive. And my son gets the services that they believe he needs.  In fact I was question recently because I was the one who decided to drop his physical therapy. He was getting 45 minutes a week at school of traditional physical therapy,  but it was  conflicting with the specialized therapy that he was getting after school (that I pay for).  His brain was getting "confused"  because the approach and theory of the specialized therapy is not the same as traditional therapy. And a specialized therapy is doing wonders for him so we're sticking with that. But I think I was the first parent ever to request that a service actually be removed from his IEP !

Edited December 18, 2016 by neuromom

[possibilities]

2 hours ago, neuromom said:

 I think you're the first person ever that I have seen bring up the holocaust in regards to disabled people.

You are hanging around with the wrong people! (I kid... sort of....)

I was listening to an interview this week, with an author who wrote a book about the history of "autism" (i.e. the evolution of the word and how it's used, among other things). He specifically said: "the Nazis practiced on disabled people" on the way to exterminating their other targets. I think this is well-known among general historians who study the Holocaust, and also among disability rights activists, but not really by anyone else. Too many people still think: "well, that's different" (because they think we are worthless anyway).

[bros402]

13 hours ago, neuromom said:

Bros402 ..did the seizure help you???  After 7 years of being seizure free, my son started having occasional seizures last winter, about the time he hit puberty. And the seizures seem to precede some sort of brain growth and acquisition of new skills. Like the brain is rewiring itself..quite amazing.

Yeah, I had three seizures that lasted a total of 1 hour 45 minutes. Before the seizure, I didn't really understand math - if I were asked "If you have one apple and I give you one apply, how many apples do you have?" I would answer correctly. If I were asked "What is one plus one?" I would have no idea what the answer was.

After the seizure (1996), I started to understand math. The theory of my neurologist at the time is that I had a large buildup of electrical activity in the brain which led to some cognitive delays. I had no seizures until 2005, around puberty - puberty can affect people with epilepsy.

With your son, it could be neuroplasticity of some kind - I just hope his seizures aren't too severe and they are able to keep them under control with medication (I have been on 9 anti-convulsants since 1996, which is apparently really unusual).

[alexvillage]

12 hours ago, neuromom said:

Yes yes Yes! Omg!  I think you're the first person ever that I have seen bring up the holocaust in regards to disabled people.  I have been trying to educate people myself for years and Ithey don't want to listen. So you and I can set our little table alone together  ....

 People just don't understand history. As for me, I am totally frightened by the fact that we have a very strong Eugencis movement already in place in our country.  And because people don't understand history, they are easily fooled into buying into it because it's sold under other names.  Even though I try to engage in conversations about it, people generally don't want to. All I can do is just be "awake"  in regards to what is going on around me so that I can best advocate, and protect, my son. 

As possibilities said, disability rights activists have been saying that forever. The problem is that nobody wants to listen to disabled people. Just check disability advocacy organizations. Some of them have 1 or 2 token disabled in their boards, basically none of them employs disabled people, they all silence the people they claim to work for, the biggest autism advocacy group uses only negative words when referring to autistics. TV shows and movies love to make disability a heroic reason for someone to dies or to ask to be killed.

It is great you are happy with your son's school and how things are going but I would suggest that you start looking - if you haven't yet - for adults who have the same disability as your son and who are somehow involved in activism. Things get very bad once they are adults. I am not disabled and all I write here is not because I learned in school, or from so-called experts. EVERYTHING I know about disabilities I learned from disabled people themselves and that's why they allow me to join them in protests and such. And I am still learning because there are so many wrong assumptions