Speechless Close To Home: Real Families, Real IEPs

[neuromom]

13 hours ago, bros402 said:

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).

My son usually has a build up, and then a "release" of energy that culminates in a seizure about once a month. He's almost 12, and has been medication free since he was four. We do holistic medicine and homeopathy since he was two. He had uncontrolled epilepsy at that point , which had a very specific cause. The homeopathic cures him of the epilepsy (well, eliminated that specific cause anyway) , elimanited the spasticity that was causing the "CP", restored his vison to a degree ( he has CVi, but used to be completely blind) and cured his asthma. Fortunately he has a very supportive neurologist who supports our holistic approach and is pleased that he doesn't need medications. 

8 hours ago, alexvillage said:

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

I am always on the lookout for people like my son, but have had no luck so far. He has a unique set of disabilities, and really has remained "undiagnosed " for most of his life. He's even pretty unique in his "unique " school.  

Ive been in the disability "community" going on 12 years, though I'm. Not familiar  with any advocacy groups. But then, I live in a rural area north of the state capital , so I imagine most of the groups are located in the capital city. I DO live right next door to university town..and for all their claims of being "liberal" and "advocates" for people with disabilities, the evidence is in their own schools, where they dismiss the most severe cases, or remove "problem" kids from their schools.

i imagine that the treatment of people with disabilities may differ by region, or state? I live in a state that is essentially broke, though politicians will never acknowledge it. As a result, they try to "cut costs" in certain areas. And I'm sure the disabled community suffers disproportionately.

Edited December 18, 2016 by neuromom

[Court]

Sadly, I think the treatment can vary from school to school even in the same district. We've had a wonderful experience with two different children. My oldest has a range of needs.

The school that is about a mile from us has a terrible reputation in that area. My friends are shocked at the differences in how we've been treated by the school and how smoothly everything has gone. 

I honestly think the other school's goal is to get the parents to choice their children out to a neighboring school.

Edited December 19, 2016 by Court

[bros402]

19 hours ago, alexvillage said:

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

I learned more about IDEA and the Social Security Act just from my experiences with it and reading chunks of the laws. The employment rate of people with disabilities is abysmal - and I feel horrible that I have joined the incredibly high percentage of unemployed people with disabilities (Not in a condescending way - I fully expected to be working by now... but life gets in the way).

[bros402]

10 hours ago, neuromom said:

My son usually has a build up, and then a "release" of energy that culminates in a seizure about once a month. He's almost 12, and has been medication free since he was four. We do holistic medicine and homeopathy since he was two. He had uncontrolled epilepsy at that point , which had a very specific cause. The homeopathic cures him of the epilepsy (well, eliminated that specific cause anyway) , elimanited the spasticity that was causing the "CP", restored his vison to a degree ( he has CVi, but used to be completely blind) and cured his asthma. Fortunately he has a very supportive neurologist who supports our holistic approach and is pleased that he doesn't need medications. 

I am always on the lookout for people like my son, but have had no luck so far. He has a unique set of disabilities, and really has remained "undiagnosed " for most of his life. He's even pretty unique in his "unique " school.  

Ive been in the disability "community" going on 12 years, though I'm. Not familiar  with any advocacy groups. But then, I live in a rural area north of the state capital , so I imagine most of the groups are located in the capital city. I DO live right next door to university town..and for all their claims of being "liberal" and "advocates" for people with disabilities, the evidence is in their own schools, where they dismiss the most severe cases, or remove "problem" kids from their schools.

i imagine that the treatment of people with disabilities may differ by region, or state? I live in a state that is essentially broke, though politicians will never acknowledge it. As a result, they try to "cut costs" in certain areas. And I'm sure the disabled community suffers disproportionately.

Marijuana?

 have latent nystagmus and left amblyopia.

I have a unique set of disabilities - dysgraphia, ADHD-PI, fine and gross motor dysfunction, underdeveloped muscles, hyptonia, epilepsy, the two aforementioned visual issues, cognitive dysfunction secondary to seizure disorder and learning disability, and a variety of anxieties. They think the first three + the epilepsy may be caused by a very mild case of PVL (death of white matter - in my case, it is surrounding the corpus callosum). Had the PVL because i was born at 25 weeks.

 

3 hours ago, Court said:

Sadly, I think the treatment can vary from school to school even in the same district. We've had a wonderful experience with two different children. My oldest has a range of needs.

The school that is about a mile from us has a terrible reputation in that area. My friends are shocked at the differences in how we've been treated by the school and how smoothly everything has gone. 

I honestly think the other school's goal is to get the parents to choice their children out to a neighboring school.

Absolutely - treatment varies within districts, all depends on the climate fostered by the administration.

[neuromom]

13 hours ago, bros402 said:

Marijuana?

 have latent nystagmus and left amblyopia.

I have a unique set of disabilities - dysgraphia, ADHD-PI, fine and gross motor dysfunction, underdeveloped muscles, hyptonia, epilepsy, the two aforementioned visual issues, cognitive dysfunction secondary to seizure disorder and learning disability, and a variety of anxieties. They think the first three + the epilepsy may be caused by a very mild case of PVL (death of white matter - in my case, it is surrounding the corpus callosum). Had the PVL because i was born at 25 weeks.

 

Absolutely - treatment varies within districts, all depends on the climate fostered by the administration.

Edited December 19, 2016 by neuromom

[neuromom]

Bros402...you definitely have a full basket! You come across as someone who is very thoughtful, articulate and intelligent. Which just goes to show, that people are not defined by their disabilities! Way too many people make assumptions of people's cognitive abilities based on the "labels" , and even on appearance.

 

and as far as anxiety goes, my son has had some issues with that also. His "language"  it's not understandable to me, although my mother seems to understand quite a bit . ( she thinks it's because her brain is structured differently because of her dyslexia )  in any case, my son has issues at times where he will bite his hand because he is very frustrated. Generally because he's trying to say something and he's not being understood.

 

apologies for the "split post".  For the life of me, I can't figure out how to correct it .

Edited December 19, 2016 by neuromom

[bros402]

10 hours ago, neuromom said:

Bros402...you definitely have a full basket! You come across as someone who is very thoughtful, articulate and intelligent. Which just goes to show, that people are not defined by their disabilities! Way too many people make assumptions of people's cognitive abilities based on the "labels" , and even on appearance.

 

and as far as anxiety goes, my son has had some issues with that also. His "language"  it's not understandable to me, although my mother seems to understand quite a bit . ( she thinks it's because her brain is structured differently because of her dyslexia )  in any case, my son has issues at times where he will bite his hand because he is very frustrated. Generally because he's trying to say something and he's not being understood.

 

apologies for the "split post".  For the life of me, I can't figure out how to correct it .

Yeah, people like to make assumptions based on how someone looks - or a label on an IEP - or something like that. Not the best way for a teacher or someone to judge somebody. I had an evaluation in early 11th grade - it was my first since 1st grade (My district liked to violate IDEA!). I got there and my IEP case manager was doing the educational assessment. She says "Okaaaaaaayyyyyyy, don't worrrrryyyyyy if this is haaaaaaaaaaaarrrrrrrdddddddddddd. You donnnnnn't haaaave toooo anssweerrrrrr everyyyyyyy questionnnnnnnn." She stretched the words like that and said it very slowly. She looked shocked when I answered a whole lot of the questions correctly - my scores on the vocabulary and more word-focused stuff were pretty high - above high school level (Last time I had a neuropsych eval, my Verbal scores were, for the most part, at or above a post-graduate level and he said that I should take the LSATs "for fun" because he said I would probably score incredibly high on them).

This woman was in every one of my IEP meetings since I had entered HS. I was in AP classes (Which she tried her hardest to try to make me not sign up for them, because "Students on IEPs can't take AP classes!" which was the sequel to "Students on IEPs can't take Honors classes!"), so it isn't like it was much of a surprise.

I didn't really speak intelligibly until I was 5 - my mom could sort of understand me, my dad couldn't. A day where I would point at the fridge and grunt if I were hungry or thirsty was a good day. I apparently gave my mom a *lot* of black eyes when I was a toddler - that is how I got out my frustration.

Yeah, I haven't figured out a way to correct the posts either - most forum systems like to make it intuitive to edit posts... this one is not.

[neuromom]

14 hours ago, bros402 said:

Yeah, people like to make assumptions based on how someone looks - or a label on an IEP - or something like that. Not the best way for a teacher or someone to judge somebody. I had an evaluation in early 11th grade - it was my first since 1st grade (My district liked to violate IDEA!). I got there and my IEP case manager was doing the educational assessment. She says "Okaaaaaaayyyyyyy, don't worrrrryyyyyy if this is haaaaaaaaaaaarrrrrrrdddddddddddd. You donnnnnn't haaaave toooo anssweerrrrrr everyyyyyyy questionnnnnnnn." She stretched the words like that and said it very slowly. She looked shocked when I answered a whole lot of the questions correctly - my scores on the vocabulary and more word-focused stuff were pretty high - above high school level (Last time I had a neuropsych eval, my Verbal scores were, for the most part, at or above a post-graduate level and he said that I should take the LSATs "for fun" because he said I would probably score incredibly high on them).

This woman was in every one of my IEP meetings since I had entered HS. I was in AP classes (Which she tried her hardest to try to make me not sign up for them, because "Students on IEPs can't take AP classes!" which was the sequel to "Students on IEPs can't take Honors classes!"), so it isn't like it was much of a surprise.

I didn't really speak intelligibly until I was 5 - my mom could sort of understand me, my dad couldn't. A day where I would point at the fridge and grunt if I were hungry or thirsty was a good day. I apparently gave my mom a *lot* of black eyes when I was a toddler - that is how I got out my frustration.

Yeah, I haven't figured out a way to correct the posts either - most forum systems like to make it intuitive to edit posts... this one is not.

Oh, brother! The ignorance of people just floors me! It seems insane to me that school's would try to put "limits" on kids with IEPs, when the goal should be to get them as high functioning as possible- and allow them to challenge themselves to better themselves as ANY kid would want to do!

i haven't suffered a black eye yet. But I have had a minor case of whiplash (from a head butt) and a near broken nose (when my son, at 10 years old lunged at me and nearly bit it off) . And I have a nice collection of bites and scratches all over my arms, shoulders and back. And most recently, he has been pulling out my hair (not intentionally though- he grabs my head and pulls my face to his as he's talking, and his fingers get stuck in my hair)

ive become pretty adept at reading his "body language" and sensing when a lot of these things may happen. And I'm pretty quick at getting out of his way! But, it's also the reason I can't get respite (I qualify for 25 hrs a month) because I wouldn't dare leave a near stranger with him. Not only could HE hurt THEM, but they may retaliate and really hurt him also. 

Edited December 20, 2016 by neuromom

[bros402]

9 hours ago, neuromom said:

Oh, brother! The ignorance of people just floors me! It seems insane to me that school's would try to put "limits" on kids with IEPs, when the goal should be to get them as high functioning as possible- and allow them to challenge themselves to better themselves as ANY kid would want to do!

i haven't suffered a black eye yet. But I have had a minor case of whiplash (from a head butt) and a near broken nose (when my son, at 10 years old lunged at me and nearly bit it off) . And I have a nice collection of bites and scratches all over my arms, shoulders and back. And most recently, he has been pulling out my hair (not intentionally though- he grabs my head and pulls my face to his as he's talking, and his fingers get stuck in my hair)

ive become pretty adept at reading his "body language" and sensing when a lot of these things may happen. And I'm pretty quick at getting out of his way! But, it's also the reason I can't get respite (I qualify for 25 hrs a month) because I wouldn't dare leave a near stranger with him. Not only could HE hurt THEM, but they may retaliate and really hurt him also. 

The case manager who did that also refused to document discrimination against me by multiple teachers and held an illegal IEP meeting (Never sent notice of the meeting to my parents and then held it without them because "It'll all just be the same!" - didn't even call my parents to tell them there was an IEP meeting. My mom worked right down the road, she could've just told her boss and spent 45 minutes at the school!). She eventually retired "due to disability" a few weeks after the district settled with a parent after they filed for Due Process, but before the hearing was held. The board of ed meeting minutes said "in excess of $100,000" was set aside after legal fees.

My suggestion would be to try some of those respite hours - better to get him used to other people helping him sooner than later. Maybe the first few times just spend some time in the backyard or something so you can help if you are needed.

[topanga]

Please don't yell at me, but why are emotions so strong when it comes to the constantly-changing nomenclature surrounding people who use wheelchairs or have other physical/mental diagnoses? My questions are sincere and not at all facetious.

Yes, it's obvious why we don't call people "crippled" or use words with negative connotations like the R-word. 

But according to what I see on TV and read on social media handicapped is out, disabled is out, and using phrases like physically or mentally challenged might get me dirty looks.  So what are acceptable words and phrases?

I've heard the term "differently-abled." But how true is that? Yes, I'm amazed that many people with diagnoses are able to live independently, have jobs, sustain relationships, and communicate in ways that maybe they couldn't a few a years ago. But 1) Not everyone has these abilities. Some people continue to have limited physical or psychological and/or social skills. Therefore they technically are not as "abled" in those areas as other people.  Do they get a different name? 2) What about the actual reality of a physical or mental condition? For example, my mother became blind a few years ago. Yes, she can move around her apartment with ease. But she still needs assistance from another person when walking to the dining room to eat meals,  and she can no longer read books or drive.  So me calling her "disabled" doesn't mean she has no value to society and can't do anything independently.   But if I were to call her "differently-abled," isn't that falsely declaring that she can do everything she used to, but with accommodations? My mother can't drive or read books. And there are no accommodations for that. Sure she can listen to audiobooks, but she can't read them on her own. 

Please advise. 

[possibilities]

I have heard that there are some people who think "differently abled" is cool and correct, but I don't personally agree with that and none of the activists I know use that term. To me, it's a total BS whitewash. I think they are trying to put the emphasis on what we can do, vs what we can't, to "be positive" and challenge the stigma (many people think we can't do anything and are worthless, so saying we're just different, not defective is an attempt to address that). But personally, I think it's a load of crap.

If you mom had proper mobility training, she could probably navigate to the dining room on her own. I had a blind girlfriend who traveled independently all over the place, on airplanes, taking taxis, on foot, on buses and trains, etc. For sure she had no problem moving around her own home. She lived alone and did all kinds of stuff for herself. It's not impossible. Ditto reading: she was able to read braille, though very few books are available in braille. There are also optical scanner devices that can convert print into raised letters that you can feel with your fingers, if you are trained in it, thus allowing you to read with your fingers. Yes, it's a hassle-- both to learn how to do it and and to get the equipment and training. But I think in general that there is way too much emphasis on what people are used to and not enough on what is possible with adequate resources.

On the other hand, I know there are things that are not possible. I can't do certain things, with or without any kind of accommodations.

But there is a way of thinking about disability that is focused on the can'ts and then there is a way that is focused on the cans. What is my value as a person, what can I do, what is my life about, what is my potential? Very often, disabled people are thought of as the sum total of what we can't do, and not what we can, and that is a sure way to ruin someone's life.

There is something called the "social model" of disability. It differs from the "medical model". Basically, the medical model says that a disabled person is someone who can't do something. This is a defect. Tragic! Limiting! Sad! The "social model" says that everyone can do some things and not others, and what is valued by society is what determines who is disabled vs non-disabled. This puts the focus on everyone's value and potential, not on validating some and tossing the others into a pile of oopsies.

So for me, as a social model person, I consider "disabled" to be an accurate term-- socially defined, there are barriers to my full participation in society, and values assigned to my strengths and weaknesses that put me at a disadvantage. This goes beyond my experience of my body and personal reality, and into how others perceive me.

There are historical associations with various terms, which is why they are offensive. I personally sometimes call myself crippled, but it's like using the n-word: something you can choose to do if you are technically in that category, but not everyone is comfortable "reclaiming" it and you should never say it if you're not "one of them." I'm a lesbian and I and most of my friends call ourselves "dykes" but it feels a lot different when we use it than when some hateful piece of shit yells it at you as an insult.

The prejudice against disabled people is often different in tone than the prejudice against lesbians or people of color, in that disabled people are considered sad and pathetic and treated as though we either are not aware of what is going on or are just worthless. So people are less likely to yell at us angrily, but are more likely to speak to us in sickeningly sweet voices that reduce us to insignificance. By contrast, as a lesbian, I would not get that kind of treatment but people might be hostile to me and think I'm a sinner or disgusting or yell at me with anger. But either way, it's framing my existence as something lesser and unwanted and not fully human and not belonging in the world. This has practical implications for how the world is structured, as well as psychological implications for how we feel about each other and ourselves.

The words used to describe us are loaded because they are reflective of the way we are treated, and how our lives are made more or less difficult/possible/impossible, and so when people are pushing back against the words, it comes from pushing back against unwanted and harmful ways they've been used.

Some people think it's better to say "people with disabilities" instead of "disabled people" because it changes the emphasis on the person (who also has a disability) vs a person who is defined primarily by being disabled. I understand where that impulse comes from, but I don't care about that myself. I don't call myself a "person with Judaism" or a "woman with lesbianism" (I'm Jewish, a lesbian, a Jewish lesbian, a Jew). So I'm ok being a disabled person, too. It's the same thing to me.

But I get where others may be coming from when they look at it another way.

I hope something in this helps.

Basically, as people work for our rights, the dialogue changes.

[bros402]

Yeah, i'm fine with disabled and when referring to someone with a disability, I err on the side of person first language, because that is just the nice thing to do.

Today I had the fun time of trying to get medicaid to take back money that they overpaid because my primary insurance overcharged them.

Medicaid told me to just cash the check, but they won't give me anything in writing saying that.

I am going to have fun next week, I guess.

[possibilities]

Socia Security overpaid me once, by accident. I called them and asked them why I had gotten this extra check and they told me to just spend it, not to worry about it, and if they made a mistake it was my lucky day and I could keep it.

Later, I got another letter in the mail, saying I had to repay it. They  took a percentage of my regular check every month for several years. I tried to fight it, because they had TOLD me I could keep the money, but I lost.

I would be very careful not to let Medicaid put you through a similar situation! If they won't take it back right away, save it somewhere in case they change their mind, or document very carefully that they understand the situation and won't punish you later for keeping it!

[MsNewsradio]

18 hours ago, possibilities said:

Some people think it's better to say "people with disabilities" instead of "disabled people" because it changes the emphasis on the person (who also has a disability) vs a person who is defined primarily by being disabled. I understand where that impulse comes from, but I don't care about that myself. I don't call myself a "person with Judaism" or a "woman with lesbianism" (I'm Jewish, a lesbian, a Jewish lesbian, a Jew). So I'm ok being a disabled person, too. It's the same thing to me.

While I also understand where the impulse comes from, this is a big issue in the autistic community. For many, using person first language (she has autism) versus identity first language (she is autistic) is considered almost insulting. It's viewed as an attempt to separate the person from their autism, and seem as though it's something damaging that needs to be distanced from.  As you said, you wouldn't call someone a person with Judaism. Or say that a person has left handedness. They are Jewish, or they are left-handed. 

I'm autistic. It can be disabling. I find neither saying I'm autistic or I'm disabled to be an insult. You cannot separate me from my neurology. They are intrinsically linked. It literally shapes how I perceive, process, and react to the world around me. I would not be me if my brain were "rewired". And it reads as needing to underline/emphasize our humanity - "Well yes, they're autistic, but they're still people!" No kidding. We're all people. That really shouldn't have to be spelled out - it's redundant. No one goes around saying "Here is a person with neurotypical-ness". 

I think bottom line though is especially when talking to/about a person, to just ask the individual how they want to be referred to. Some people care greatly, and others don't care at all. I'm in the camp where I'm not going to jump down someone's throat if they use person first language around me, but it does bug me a bit, and I'd prefer they use identity first language if they're referring to me.  

[neuromom]

Very good question, topanga, and great responses!  When my son was younger, I was given a pamphlet by the regional center on the "proper terminology ". I got so confused!  And I told the social worker so. She said that since I'm the "mom" , I get to decide what terminology I prefer to use with my kiddo. And that confused me as well. That all led to me being nervous when using any type of label or description for my son..because goodness, I was the MOM and I wanted to get the terminology right! 

For a while I referred to my son has "special needs" - but that led people to believe that he had learning disabilities, or some other "special" need that would require some form of accommodation, but belied the fact that my son needs MAJOR accommodations.

My son has "multiple disabilities." And that's a fact. And it's who he is, and. I don't see it as a "negative" term. It is the term that best describes him. I've basically gotten to the "screw it" point. I call my son "disabled" (differently abled, to me, is a ridiculous term and an attempt to be PC).

It all has to do with the "tone" that someone uses with the words. And I welcome people who see me out with my son (who is 12) and may have questions. So, if someone were to see my son and noticed that his behavior wasn't "typical" and they asked "is your son disabled?" In an inquisitive way (no one has ever had the guts to ask yet!) I would  say "yes! He has multiple disabilities! " and then I'd probably list them!  :-) I always like to educate people and bring awareness where there is genuine curiousity. 

[bros402]

23 hours ago, possibilities said:

Socia Security overpaid me once, by accident. I called them and asked them why I had gotten this extra check and they told me to just spend it, not to worry about it, and if they made a mistake it was my lucky day and I could keep it.

Later, I got another letter in the mail, saying I had to repay it. They  took a percentage of my regular check every month for several years. I tried to fight it, because they had TOLD me I could keep the money, but I lost.

I would be very careful not to let Medicaid put you through a similar situation! If they won't take it back right away, save it somewhere in case they change their mind, or document very carefully that they understand the situation and won't punish you later for keeping it!

Yeah. I had to deal with Social Security last year because they claimed they overpaid me $26,000.

Turned out they *did* overpay me by $2600 (I was in college, was saving a chunk of backpay for the tuition for the next semester).

They had updated their software like the day before the letter was going to go out and it decided to move the decimal point, making $2600.00 into $26000.0.

Got that letter in March.

They just resolved it Wednesday (I filled out all of the paperwork back in April, but they lost it when they were doing their "annual office rearrangement"). I should get a letter in the next 2 weeks.

With Medicaid, I am not touching that check - especially since they won't give anything in writing. The way it works in NJ is medicaid contracts out to HMOs, so I called the HMO, and they said that they cannot take money.

It's weird.

5 hours ago, neuromom said:

Very good question, topanga, and great responses!  When my son was younger, I was given a pamphlet by the regional center on the "proper terminology ". I got so confused!  And I told the social worker so. She said that since I'm the "mom" , I get to decide what terminology I prefer to use with my kiddo. And that confused me as well. That all led to me being nervous when using any type of label or description for my son..because goodness, I was the MOM and I wanted to get the terminology right! 

For a while I referred to my son has "special needs" - but that led people to believe that he had learning disabilities, or some other "special" need that would require some form of accommodation, but belied the fact that my son needs MAJOR accommodations.

My son has "multiple disabilities." And that's a fact. And it's who he is, and. I don't see it as a "negative" term. It is the term that best describes him. I've basically gotten to the "screw it" point. I call my son "disabled" (differently abled, to me, is a ridiculous term and an attempt to be PC).

It all has to do with the "tone" that someone uses with the words. And I welcome people who see me out with my son (who is 12) and may have questions. So, if someone were to see my son and noticed that his behavior wasn't "typical" and they asked "is your son disabled?" In an inquisitive way (no one has ever had the guts to ask yet!) I would  say "yes! He has multiple disabilities! " and then I'd probably list them!  :-) I always like to educate people and bring awareness where there is genuine curiousity. 

Multiply disabled is a good catchall - it was my IEP category PreK-12. It's pretty useful.

It's sort of fun when I go to a doctor, they ask about medical conditions, I say I have multiple disabilities, they give a look like "Haha, you probably just mean you wear glasses and maybe have ADHD."

Then I rattle the list off and sometimes, eyes bug out. It is fun at this point in my life.

I usually educate my doctors on something my first visit - usually about what dygraphia is. Education helps remove the stigma associated with disabilities. I have epilepsy, my dad had epilepsy (His went away) - for years, he would tell me not to tell doctors I had epilepsy, because then they would think I was [r-word] - because when he was younger, if he mentioned he had epilepsy, doctors would start to treat him with "kid gloves"

Edited January 27, 2017 by bros402

[Ithaca2323]

My stance on person-first language is that I could not care less, almost literally. I'll refer to you however you prefer—because that's just common courtesy—but the whole debate is tiring to me.

I know we're capable of handling multiple issues at once, but I'm married with a young daughter, and honestly, there are more important issues to focus on. The lack of affordable, accessible houses. The fact that so many day cares lack accessibility. The paucity of existing solutions for the challenges of caring for a baby. I just don't care what I'm called when I'm trying to figure out those issues.

[dmmetler]

For some reason, the Surprise party episode didn't appear on demand until this week's did. Anyway, I love the way this show is going into the sibling dynamics so well. I have been in the position of being the oldest with CP and having my parents tell my brother to keep an eye on me. That really is a frustrating position, even when you know it is only the logical thing to do (let's face it, you don't leave the person with the uncontrolled seizure disorder in charge of making sure everyone gets to school on time when the next sibling can drive). 

Dylan rings true as well-she has to be the "normal" one, the strong one. My husband comes from a family with two of four children having significant disabilities, and, to make things worse, his father split. DH was basically Ray-academically focused, school was his outlet, got a lot of scholarships to go to specialized summer programs, and camps, etc. His youngest sister was Dylan-the normal one. The one who didn't rock the boat, was always there, and was stable. 

[bros402]

So for those with children - the school year is coming to a close over the next four weeks. Anyone have plans for the summer?

Personally, i'm going to continue doing what I have been doing - lying on the couch, might go to Atlantic City for a day trip in August and gamble $200.

[dmmetler]

We're flying to Reno so my DD can do a specific program (which is why flying to Maine for a specific camp is not surprising to me. I can imagine that camps designed for kids at JJ's level of physical needs are relatively rare. I know several for kids with other special needs, but usually they're focused on kids who need minimal physical assistance.) We've done our family vacation there for the last 2 years. This is the last year for her to do the week long program. The teens go for 3 weeks, which is a bit long for DH and I to stay there for our vacation. 

[Big Mother]

WHere I live in NY there are quite a few summer camps for kids with physical disabilities from the Jewish community. I can name at least 3 off the top of my head. But I get that it's not common all across the U.S.

My son who is severely autistic aged out of the camp he attended for four summers and I can't imagine what we'd do this summer. Thankfully we moved him to a residence a few months ago and he is extremely happy and well cared for there, and will have an amazing outdoor experience as well.

[neuromom]

17 hours ago, bros402 said:

So for those with children - the school year is coming to a close over the next four weeks. Anyone have plans for the summer?

Personally, i'm going to continue doing what I have been doing - lying on the couch, might go to Atlantic City for a day trip in August and gamble $200.

 I'm actually leaving in two days with my 12 year old to go to Squaw Valley ((CA) for the No Barriers Summit. I have him signed up for activities such as playing drums, adaptive swimming, day hikes (wheelie for him! ) and "feeling music" (vibration). I'm so excited about it! When we went last year, he learned to tread water for the first time,,,,and I was introduced to a special therapy called Neuromovement (the Anat Baniel method) and it has been AMAZING for his development and reorganizing his brain! (My 72 year old mom is doing it too and it's helped her tremendously)

Bros402 posted some info about other camps, which I will keep on hand for when my son gets older. 

Dmmetler...which camp in Reno is that? I ask only because my brother lives there. 

[neuromom]

Hi everyone! I know we are on summer hiatus , but I thought I'd check in. I took my 12 year old to the No Barriers Summit this month in Squaw Valley , CA. It was amazing! Lots of activities for my kiddo, including swimming and hiking . They even had adaptive skiing (in June!) thought it was a little much for my kid. 

I really enjoyed the speakers, which included Zach Anner.  I had never heard of him before until he guest starred. He was absolutely hilarious ! I even downloaded his book afterwords. Marlee Maitlin "spoke" and was awesome as well. The keynote speakers were Noah Galloway (opening ceremony) and Erik Weinmayer (closing ceremony) I had the privilege of speaking to both.

probabky the most awesome experience , however , was the opportunity to take a class called "Feeling Music"- with Mandy Harvey, who just auditioned for Americas Got Talent ..and earned the Golden Buzzer.  Her class was  during the last session. There were only about 10 of us, and my son was the only kid. As luck would have it, he had a "seizure "  at the very beginning of the class. Everyone seemed concerned,  but I explain to them that I wasnt surprised because he had SO many experiences , that his brain needed to "process" them all..which all leads to a "reset" (seizure ) which is pretty much necessary for his brain growth.  He woke up at the end of class and wanted to stand up and walk.  And Mandy asked if he would like to "feel" her guitar... and I told her that he likes to listen to voices and music and I ask her to play a few chords.  But she ended up singing the entire song "Try" - just for him! And he was dancing and laughing and singing along...we were all in tears at the end!

 Needless to say I was excited to see that she did so well  On AGT,  since I know her story and how incredibly hard she has worked. 

runor has it that No Barriers may be in NYC next year. Too far for us, sadly.  If any of you on the East Coast are able to go next summer, I highly recommend it! 

[bros402]

That sounds like an awesome time!

No need to not come here just because it's summer, we can still talk in the social topics

[bros402]

How is everyone doing, now that school is starting within the next month? Having a good end of summer?

[dmmetler]

The "can I have a family?" Brought back memories. Back in the early internet days (pre WWW) I was on a listserv for parents of kids with CP and the single question parents asked me most was "you're married? To someone able bodied? How does that work?"Having said that, I married someone who had grown up with a sibling with CP. That makes a difference. I'm at the mild/moderate end, though, and the demands on a spouse are less "physical caregiver" and more "need to be understanding". 

 

On careers, JJ may end up being in the situation where he can't afford to work. I know two people who are similar in functioning to JJ who are minimally paid volunteers for non-profits (often working and paid for only a handful of hours/week, but volunteering far more), because the jobs in their fields (both work with computers, one as a website designer, the other as a DBMS specialist) simply cannot cover the costs for someone like Kenneth. They have to keep their federal and state support. 

[bros402]

15 hours ago, dmmetler said:

The "can I have a family?" Brought back memories. Back in the early internet days (pre WWW) I was on a listserv for parents of kids with CP and the single question parents asked me most was "you're married? To someone able bodied? How does that work?"Having said that, I married someone who had grown up with a sibling with CP. That makes a difference. I'm at the mild/moderate end, though, and the demands on a spouse are less "physical caregiver" and more "need to be understanding". 

 

On careers, JJ may end up being in the situation where he can't afford to work. I know two people who are similar in functioning to JJ who are minimally paid volunteers for non-profits (often working and paid for only a handful of hours/week, but volunteering far more), because the jobs in their fields (both work with computers, one as a website designer, the other as a DBMS specialist) simply cannot cover the costs for someone like Kenneth. They have to keep their federal and state support. 

I have mild CP and a few other medical issues - so I have the issue of "Can I risk trying to work and losing all of my coverage?" - since I have a disability waiver to keep my mother's insurance over 26. The federal and state support is vital to my survival.

[neuromom]

22 hours ago, bros402 said:

I have mild CP and a few other medical issues - so I have the issue of "Can I risk trying to work and losing all of my coverage?" - since I have a disability waiver to keep my mother's insurance over 26. The federal and state support is vital to my survival.

Do you know if that waiver depends on the state you are in? I haven’t thought that far down the line...yet. At least I try not to as I just have to take things day to day with my son. And he’s not quite 13.

[bros402]

1 hour ago, neuromom said:

Do you know if that waiver depends on the state you are in? I haven’t thought that far down the line...yet. At least I try not to as I just have to take things day to day with my son. And he’s not quite 13.

We have Aetna - I found it referenced in like a subsection of a subsection in the plan booklet (My mom gets insurance through her employer) - then we had to call Aetna, talk to a few reps to find someone who knew about it, then we got connected to some department (I think Chronic Care Management?), and they sent us the paperwork - neurologist had to fill out a paperwork and write a letter, and we had a few other doctors write letters. First time I was approved for a year, earlier this year I was approved "for the duration of coverage stated above" - with nothing stated above.

 

The name of the form is Request for Continuation of Coverage for Disabled Child. It was also referred to as a disabled dependent waiver. I actually didn't qualify under NJ's Dependent Under 31 Law (well, I did, but we would've had to pay $1000 a month for the plan - we don't pay anything for this, since it is still family coverage, as my dad uses the plan). They had a giant page of perjury warnings - they listed pretty much every state, including CA.

Edited October 21, 2017 by bros402

[dmmetler]

On the “JJ not on track to graduate”, I thought “real ways schools dropped the ball” might be instructive”.

 

i got dropped from Speech/Language on moving to middle school despite still clearly qualifying. The rationale given was “teens don’t want to seem different”. Without having the therapist to work with, several parts of my IEP (like prior notice of oral assignments so I could work with the speech therapist on them) didn’t happen. That happened for a year  until I asked about it myself-and then it took another year to get me back into therapy. (And my speech intelligibility rose dramatically in high school because I had a therapist who worked on that instead of specific articulation, so that time was not wasted).

[readster]

20 hours ago, dmmetler said:

On the “JJ not on track to graduate”, I thought “real ways schools dropped the ball” might be instructive”.

 

i got dropped from Speech/Language on moving to middle school despite still clearly qualifying. The rationale given was “teens don’t want to seem different”. Without having the therapist to work with, several parts of my IEP (like prior notice of oral assignments so I could work with the speech therapist on them) didn’t happen. That happened for a year  until I asked about it myself-and then it took another year to get me back into therapy. (And my speech intelligibility rose dramatically in high school because I had a therapist who worked on that instead of specific articulation, so that time was not wasted).

Congrats on that. My son has gone through the same issues. He also has sensory issues, but he just switched schools and his old one closed. So, the SpEd staff was shuffled around and he got a different set of teachers. As a result, his language is great, but he gets over hyped on things and needs more break times. Unlike the previous year it was the other way around. Wish at times, special ed departments would communicate about things. They were unaware of his speech issues until the first day of class, but knew his sensory issues, but they didn't send his notes on what they did with him. Why shows like Speeceless go to extremes with teachers on TV series. They take the story about the bad ones instead of the great ones and push it to the extreme. But enough on my own kids and one of the teachers I was pissed at. The show needs to just stick with: "Because they moved so much and the current schools just didn't do their work." needs to be their reason for JJ to be off track because that is something that Maya and Jimmy would feel bad about because they know they caused it. 

[dmmetler]

The thing is, it’s on both sides. My parents didn’t catch the reduction in services until it started causing trouble in the classroom grade-wise because the IEP support had no one to provide it. 

 

The same applies here. A school putting JJ in 1/2 of a stretch Algebra 1 class and School B missing that JJ actually has not completed Algebra 1, and that not being noticed until school F is looking at credits for graduation would also be something Maya and Jimmy should have caught. Since JJ was in a special needs school at one point, it would be very possible that some classes weren’t offered at all at. High school level, and it was missed when he transferred to a mainstream setting. Maya would have been the most likely person to catch that-but the fact that classes weren’t offered at a level leading to actual proficiency would be on the school. 

 

Another option would be for JJ to struggle with required tests due to a weak background due to moving frequently or low standards at his prior schools, and that now that the school isn’t giving him an automatic bye due to being disabled, it’s coming out that he’s not as well prepared as everyone thought, he has to play catch-up. Again, it happens. And again, it partially falls on the parent.

 

I think they could either handle this very well, or very poorly. I have hope that they’ll handle it well.  I’m very nervous about the homeschooling part of it-TV tends to handle homeschooling badly, and honestly, pulling a kid out midway through senior year (and pulling out siblings who are successful in a fit of pique) rarely ends well. 

[bros402]

My district cut services for me while hiding it in a super long IEP meeting. I was being mainstreamed from self-contained, but they didn't want to pay for another OT to provide services to me, so they put it in a single sentence in like 5 or 6 pages of papers my parents had to sign at that meeting.

I hope it is that it is because of them moving so frequently, so he doesn't have the proper background knowledge. I think they will handle it well, given how they have handled previous topics.