is anyone else frusturated with an easy label?

[HaleyB]

But what you're describing is a systemic problem. This is the way it is set up. The county and school district requires a dx in order to provide services. I understand your concern with MDs that dx kids with something only to get through the red tape. But that doesn't negate the fact that these kids do need help. Call it whatever you (general you) want. The bottom line is that a child needs help. It's a slippery slope when you start trying to determine who is more worthy of the assistance when you say:


I'd rather the system be more inclusive rather than let any child fall through the cracks.

I can't say it better than DISoriented, need is need.

It is the case that the system is streached too thin right now, so fix the system. We should not have to decide who has the greatest need, we should focus on meeting the needs of every child.

 

[MomOf2DisneyKids]

My son has PDD-NOS. He doesn't meet the criteria for Autism but has all the flavorings of it. Fanning himself, inability to concentrate, not being able to sit still, easily overstimulated, prone to meltdowns, extremely rigid, just to name a few. But he's also got a very high IQ, an amazing memory and is the most loving boy one could hope to meet.

I could have written that almost exactly myself!! My DS is 5 and was just diagnosed with PDD-NOS last month, after being previously diagnosed with ADHD, Sensory Integration Dysfunction, and Receptive-Expressive Disorder. We're going to Disney in July, and I plan on getting a GAC, even though (esp if he is having a "good day") he does not LOOK like he needs one. I am so protective of him, and if someone gives me "the look", I am going to be so upset.

 

[joannelee217]

is anyone else frusturated with an easy label? putting on my flame suit. i am tired of people getting labeled autistic when they clearly are not & abusing the system. call it ADHD or ADD but not part of the high funtioning autistic spectrum. there needs to be a new definition, not this so called spectrum. my brother is autistic he can not live on his own, he functions as a 6 year old at 18, he cant cook, he cant speak but a few words, he has difficulty communicating & interacting, he doesnt drive or date, he cant support himself or work, he has a hard time concentrating & is ocd about activities & repatition, he is partially deaf, sensitive to too much noise or stimulation & has colitis, he is handicapped. now dont get me wrong there are many individuals who are disabled but there are to many able minded, able bodied people abusing the system that is here to help the truelly handicapped.

___ I think you need to get off your high horse.
flame flame flame
and shame on you
Just because a disability isn't readily visable doesn't mean it's no t there
and if you think raising a child on the spectrum is easy think again

NO PARENT WOULD LABEL their child simply to to get a fast pass at disney or a shaded spot to wait.


THere are all degrees to all kinds of illness disabilities, etc....
no two are th same.
I feel sorry for you.

Today autism is being diagnosed earlier , and there for early intervention
makes a huge difference.
I never heard of autism spectrums, and never paid much attention , autism was autism.....end of story.

Then it strikes your family, and suddenly a whole new world takes shape.
Its not easy, I thank god every day my little one is highly functioning, I thank god she communicates, I thank god for who she is.
When I look at the whole autism picture, I'm blessed, and even with the blessing I have, its no easy ride.

Do you look at a person and instantly know they are diabetic?

 

[Stacey2grls]

DISoriented I live on the south shore too, in Lindenhurst in Suffolk county. I tried to PM you, but I guess my settings will not allow it, I have to change that! My e-mail address is Staceyateaston@aol.com. Good luck to you and your son! Take care, Stacey2grls

 

[Nik's Mom]

___ I think you need to get off your high horse.
flame flame flame
and shame on you
Just because a disability isn't readily visable doesn't mean it's no t there
and if you think raising a child on the spectrum is easy think again

NO PARENT WOULD LABEL their child simply to to get a fast pass at disney or a shaded spot to wait.


THere are all degrees to all kinds of illness disabilities, etc....
no two are th same.
I feel sorry for you.

Today autism is being diagnosed earlier , and there for early intervention
makes a huge difference.
I never heard of autism spectrums, and never paid much attention , autism was autism.....end of story.

Then it strikes your family, and suddenly a whole new world takes shape.
Its not easy, I thank god every day my little one is highly functioning, I thank god she communicates, I thank god for who she is.
When I look at the whole autism picture, I'm blessed, and even with the blessing I have, its no easy ride.

Do you look at a person and instantly know they are diabetic?

Well said!

 

[DISoriented]

DISoriented I live on the south shore too, in Lindenhurst in Suffolk county. I tried to PM you, but I guess my settings will not allow it, I have to change that!

Sent you an email.

 

[Poohnatic]

To the OP...

My son is diagnosed with Asperger's Syndrome, along with several other issues. When trying to get SSDI to get him services (therapy, more psychiatric visits than my insurance covers), the representative told me to QUIT MY JOB so that my son would get 100% services from the government. That is more disgusting than the though that someone would have the mindset that "my brother's autism is worse than your child's autism". No matter how minor or severe, anyone affected by autism and the related disorders is not going to have a walk in the park and breeze through life.

BTW, I never for one minute would quit my job to get more services. We'll make do with what my insurance provider can supply. Am I a horrible person because I get a GAC? By your interpretation, possibly. My intention is not to make others mad-but to allow for my son to have a day at a park without multiple meltdowns.

Suzanne

 

[momof2OH]

Lots of disabilities are hard to "see". If you were to see my DS (14), you'd think there was not a thing wrong with him, BUT he's got: Bipolar, ADHD, Aspergers Syndrome, Generalized Anxiety Disorder, Hypothyroidism, High Cholestrol, High Triglycerides, and an Immune Disorder. We will be getting a GAC this trip incase we need it. Any number of things can go wrong at any time and we want to be prepared. I want him to have a good time and as much fun as any so called "normal" child/person (if there is such a child/person). I also have a DD (16) who has similar challenges as well as hearing impaired. Both do receive services in and out of school and it has been very helpful.
I am also one who would gladly give anything to have them not have all these "challenges" (would be easier on them) but this is what we were dealt with and we take one day at a time. By the way, I'm a single disabled mom.

For everyone here who has a child/children with some "challenges" to you all!!!!

 

[lewdyan1]

For everyone here who has a child/children with some "challenges" to you all!!!!

I just wanted to share the with you... Our two boys sound alot alike... I hope you have a great time on your trip!

 

[cymomtx]

My son was "unoffically" diagnosed autistic in 1st grade and at that time it was not a priority. In 4th grade his teacher made the assumption "you look normal, I'm treating you normal", all the power to her. But he is not normal and because of her attitude we went through six months of h*** and had him "officially" diagnosed.

Both our oldest DS14 and youngest DD8 are diagnosed with Aspergers. Yes they look normal but once you get to know them you realize there is something different. The older my son gets the wider the social gap gets.

All these individuals are entitled to programs that helps them get on in this world. Yes, there are abusers in the system, but you can't accuse everyone of that.

 

[SueM in MN]

First of all, I am just reading this thread today. I was on vacation over the weekend and did not have computer access (actually, we were camping in a trailer!)
I am very happy that everyone on this thread pretty much "played nice" and there was much more "I'm trying to understand what you mean" than bashing going on.

I think one of the things that makes it hard to understand is that some people look so "normal" compared to other people, but they have a similar diagnosis. That happens whatever condition you are talking about, there are people with very minor involvement to very major involvement. Some need more or less services than others, but no one is less deserving, just different.

• Cerebral palsy(CP) is my DD's main diagnosis. She can't walk or stand and has weakeness and incoordination of her hands. She can usually feed herself if she's having a good day, but has trouble doing anything against gravity with her hands. Compare that to another person with CP who just has weakness of one leg and walks with a limp or a friend of my DD who has very little control of any part of her body.
• Autism. One of the young men in my DD's high school class was autistic on the low functioning end of the spectrum. He hardly communicated and seemed to pay little attention to what was going on; you could definately tell from seeing him for a few seconds that he was autistic. Compare that to my nephew with Asperger's who is on the other end of the spectrum. He looks pretty normal, is very advanced in math and science, but totally freaks out (things like rolling into a ball on the floor and crying) if something unexpeccted happens, like his mom is late picking him up from school. He's had some horrible times in school because teachers just think he's "acting weird" and is doing it on purpose.
• Diabetes. Some diabetics are able to control their diabetes with diet and exercise. Some have very difficult to control diabetes and need to be very carefulk, etc.

I could go on and on with examples, but any condition is pretty much the same.

I think there are mis-diagnosis, but not because people are trying to "get" things (although I have read very occassional news stories about people "coaching" their kids to get a diagnosis so they can get SSI). I think most of the mis-labeling is because the doctor can see there is something out of "normal", but they choose a close syndrome because it doesn't quite fit any particular syndrome (which just means a number of symptoms/signs that occur together). And, as some posters mentioned, without a diagnosis, you often can't get needed services.

 

[mlwear]

Quote:
Originally Posted by Forevryoung
Children dont fit into boxes.

Society today thinks that any child not in the "gifted" program in the elementary schoolds needs services to help them improve to that "gifted" level; thus they need a reason for providing the services (aka a diagnosis) and thus it becomes very easy to label a child. I hate the fact that society consistantly tries to explain a child's behavior by labeling it.


[/QUOTE=LindsayDunn228]I agree with you 100% on that point![/QUOTE]

Hmmm.... my son is in the gifted program AND special ed. How does that sound? He is bipolar and up in the air as to whether he has Aspergers or Nonverbal Learning Disability. I am the one who referred him to special ed. I don't think there is any perk at all involved with having an IEP. My son worries what others will think of him having to get help with organization, going to resource room for 1/2 hour, etc. I don't really care about explaining his behaviors, I just want him to be able to achieve to his best abilities. Every child learns in a different way. My son learns easily, but not like the other kids.
In most cases services are very hard to obtain. You have to fight hard and your child must really need them. I know of kids who do have difficulties but the school does not deem services to be appropriate.
My younger son has classic high-functioning autism. We work very hard to help him. As others have mentioned his disablity becomes more apparent with age.
How does anyone know how someone else feels. What I mean by that is how does anyone know that Disney could be a more difficult situation for someone with LF autism than HF autism? Just as there is a spectrum, not all have the same characteristics. I also believe that some people have better coping skills than others that goes for those that are disabled and their caregivers.
Since I became the mother of a disabled the child the most important life lesson I have learned is to never judge others.

 

[taximomfor4]

I think there are mis-diagnosis, but not because people are trying to "get" things (although I have read very occassional news stories about people "coaching" their kids to get a diagnosis so they can get SSI). I think most of the mis-labeling is because the doctor can see there is something out of "normal", but they choose a close syndrome because it doesn't quite fit any particular syndrome (which just means a number of symptoms/signs that occur together). And, as some posters mentioned, without a diagnosis, you often can't get needed services.

Amen, SueM!! My dd6 has small stature (not dwarfism, just bottom of charts small), gross motor delay, fine motor delay, balance/equilibrium problems, a kidney abnormality (that so far requires monitoring but no treatment), a vision field defect, sensory integration dysfunction, cyst in her brain, tremors, facial dysmorphism, and sinus troubles (abnormally large adenoids). She began with ped at 12 mos for obvious gross motor delay, who referred us to PT, who referred us to Ped Neuro,...geneticist...ped opthalmologist...kidney specialist...bi-annual MRI's to check cyst in brain. She is wayyyyyy intelligent, and extremely verbal. Geneticist is positive she has some sort of genetic syndrome, but nobody can figure out which one. She has NO diagnosis. She qualifies for VERY little anymore, for services, because she has NO diagnosis. Special Needs camps, clubs, etc won't take her, BCMH won't either. So if some dr's want to jump at a close or possible diagnosis, maybe it really is so that the child will not slip through the cracks like ours does.

Beth

 

[puddleduck]

Hi, I hope you don't mind me jumping in as I personally don't have a disability nor do any of my children (other than needing speech), but I do teach children with special needs. I started out teaching pre-school to 1st grade age children w/ dev. disabilities. Some of the children just needed an extra push and were in reg. classes w/just resource help by the time they got to first or second grade. Other kids had more severe disabilities and ended up staying in self-contained classes. Yet, all the children I served needed the services they recieved. I now teach children w/multiple disabilities. All of my students have physical disabilities and mental disabilities. My student's diagnosis' range from cp, angelman syndrome to retts syndrome. They are all more severly involved than any of the kids in the dd class I taught, yet, I have not taught a child that did not need the services.

More examples of ranges in severity of the same disabilities:

CP: I had a teacher in college with cp. He is able to walk, but does so with a limp and his speech can be difficult to understand. He is a very intelligent man. I had a student in my dd class w/ cp. He uses a wheelchair for mobility and is able to operate for short distances himself, but is able to walk short distances if supported under his arms and can crawl around his house to get from room to room, he has limited use of one arm, but full use of his other. He goes to speech, pt and ot at school. He has an assistant who goes from class to class with him (he is now in jr high). The assistant also helps him take notes, organize and works w/ him and the resource teacher one period a day. I now have a student in my class w/ cp. He uses a wheelchair for mobility. He is unable to manuver his chair. He is nonverbal and is tubefed. He depends on others for all his physical needs. He indicates likes and dislikes by smiling, body language, or crying. He is in full time special class. We work on switch use and choice making. He will always need someone to care for him and make decisions for him. He functions in the severe and profound range.
All have cp, but at very differing levels. My college teacher probably did not recieve any services. My first student is not nearly as involved as my current student, and will probably some day live somewhat on his own, but he still needs services and will always need some services.

I could go on and on w/ examples. My point is, every child is different and every child has needs. It is pointless to try to compare, because you would be comparing apples with oranges. I have never had a child in my class who didn't need services, just different levels of service.

Sharon

 

[inkkognito]

___

NO PARENT WOULD LABEL their child simply to to get a fast pass at disney or a shaded spot to wait.

It would be nice if that were true, but I have witnessed it firsthand. I visited Disneyland with an injury that required a GAC. At one of the rides there were two moms, each with a child, laughed and joking with each other about how nice it was to be able to easily find a doctor to label the kids "ADHD" just so they don't have to wait for the rides. They were proud of it and didn't care that I was standing right there and heard every word they were saying. And those kids had a major entitlement atttitude; they nearly ran me over at boarding time, not caring one bit that I was clumbing along in a leg-length cast.

Having a temporary disability made me have new respect for people who have to live with challenges on an everyday basis. And I have hyperacusis, so I am used to odd stares from people who don't understand a "hidden" condition (people think you're nuts when you run like a banshee, with your hands over your ears, as a group of backfiring motorcycles approach). But sadly, there are some who do abuse the system, which I think is an insult to those with legitimate special needs. I think it was the blatant abusers, like the ones I encountered at DL, that the OP was referring to.

Barb

 

[Nik's Mom]

I am a DL annual pass holder and can tell you that many people there were taking advantage of the system, but DL has cracked down much harder. Granted, if a person has a note from some quack doctor, there is nothing they can do about that.

 

[faeflora]

I can so relate to issues around "diagnosis". I was born with my disability and did not know it until I turned 30 and my amazing doctor put all the pieces together ran out of the room, and then came back an announced what "I had".
I have Ehlers Danlos Syndrome Type 3 Hypermobility, which I had never heard of. Turns out my mom has it, and my dad had its sister disease Marfans Syndrome. I was so happy just to get any diagnosis so that I could get the supports that I needed.
I am in college now and without the diagnosis I could not get the accomodations that I require.


Taximom, I am so sympathetic to your situation. My poor mom dragged me to at least 20 doctors when I was growing up to try and figure out what my body was doing. She was amazing, she was also persitent. She kept telling everyone that something was wrong, I was in pain, I couldn't keep up with other kids in the PE class and I was exhausted at the end of the day. She definitely was hoping for any diagnosis just so I could get help.

 

[taximomfor4]

Taximom, I am so sympathetic to your situation. My poor mom dragged me to at least 20 doctors when I was growing up to try and figure out what my body was doing. She was amazing, she was also persitent. She kept telling everyone that something was wrong, I was in pain, I couldn't keep up with other kids in the PE class and I was exhausted at the end of the day. She definitely was hoping for any diagnosis just so I could get help.

Thanks! It is quite frustrating, especially since the peds all KNOW something is truly wrong. Now we are waiting till early puberty, when many syndromes exhibit new signs. They are hoping that something that truly earmarks a particular syndrome will show up. We know what to expect with our dd, but it is quite difficult to advocate without a diagnosis, in many instances. For a little while, she was diagnosed with hypotonic cerebral palsy. But for every dr that agreed with that (very broad, catchall) diagnosis, three others insisted that we should scratch that. I still insist that she very much looks/sounds like Noonans Syndrome. But without the heart involvement that 2/3 of Noonans cases have, they won't dx it.


Hugs for you, for your supportive words. And I am soooo glad you finally got diagnosed. It's amazing that just putting a title on a condition can make such a life-changing difference. Who would think?

Beth

 

[mlwear]

Thanks! I still insist that she very much looks/sounds like Noonans Syndrome. But without the heart involvement that 2/3 of Noonans cases have, they won't dx it.


Beth

Did you see the documentary Autism is a World on CNN? They showed it a lot and I bet if you check they still are in some odd time slots. Amazon is selling it too and public libraries were given copies. The documentary was mostly focused on autism, but the lady it was about has Noonans syndrome. They didn't discuss it at all. But, it may be interesting for you to see.

Taximom--how old is your daugher? Here they put Developmental Delay on every child (I assume not blindness, deafness, etc.) until he/she is at least 7. They being the school system and some other related services. They say it is easier to diagnosis then. The claim is it doesn't matter the label they look at the needs of the child regardless. Parent has to demand and go through the whole process again to get label changed prior to that. I did as we know my son has autism and I wanted his services tailored to those needs.

 

[taximomfor4]

Taximom--how old is your daugher? Here they put Developmental Delay on every child (I assume not blindness, deafness, etc.) until he/she is at least 7. They being the school system and some other related services. They say it is easier to diagnosis then. The claim is it doesn't matter the label they look at the needs of the child regardless. Parent has to demand and go through the whole process again to get label changed prior to that. I did as we know my son has autism and I wanted his services tailored to those needs.

My dd's 7th birthday is today. She was tested for gross + fine motor delay and adaptability issues (sensory integration dysfunction) before preschool, and qualified for services at the public school's preschool both years of preschool. Then, upon entering Kindergarten, they stopped all services because she is very bright, so her delays are not causing grades to suffer. Through first grade this year, we had her in Irish Stepdancing (to help balance/coordination/large-muscle strength) and baton (for fine motor skills, since insurance doesn't cover occupational therapy). We fought the schools this year, for a 504, and THOUGHT we got one but now they tell me it was just an "intervention PLAN" not a 504, so not law-protected. Gotta try again next year. Her SID always seemed like mainstreamed Autistic kids, and was treated like theirs (brushing, etc). I would think she had some form of autism, except that she never had any communication troubles at all, and can be extremely affectionate + cuddly. On HER terms, though.