Cracking the code—why labels don’t matter so don’t drive yourself crazy

[Anonymous]

Anonymous wrote:Lucky you, PP, that you can afford private in the DMV.

You're assuming too much PP.

It scares the crap out of us because we make pretty good money but still not sure we can "afford it", but going to try it anyhow. We have spent 7 years in a "top MCPS" school and every single year praying that "next year things would get better", yet DS is falling farther and farther behind even with a tutor because he is too far behind and we are constantly playing catch up while trying to keep up with his current classes. His future life success is truly at risk if we stay in public.

All I can say is good thing I work too!

[Anonymous]

Anonymous wrote:

Anonymous wrote:Lucky you, PP, that you can afford private in the DMV.

You're assuming too much PP.

It scares the crap out of us because we make pretty good money but still not sure we can "afford it", but going to try it anyhow. We have spent 7 years in a "top MCPS" school and every single year praying that "next year things would get better", yet DS is falling farther and farther behind even with a tutor because he is too far behind and we are constantly playing catch up while trying to keep up with his current classes. His future life success is truly at risk if we stay in public.

All I can say is good thing I work too!

So are you.

Sometimes the public option is the only option people have. If that's the case, figure out how to make it work the best you can for your kid. Public school is failing a lot of kids, not just kids with SN. So you're among a small minority PP that can actually contemplate a private option.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Lucky you, PP, that you can afford private in the DMV.

You're assuming too much PP.

It scares the crap out of us because we make pretty good money but still not sure we can "afford it", but going to try it anyhow. We have spent 7 years in a "top MCPS" school and every single year praying that "next year things would get better", yet DS is falling farther and farther behind even with a tutor because he is too far behind and we are constantly playing catch up while trying to keep up with his current classes. His future life success is truly at risk if we stay in public.

All I can say is good thing I work too!

So are you.

Sometimes the public option is the only option people have. If that's the case, figure out how to make it work the best you can for your kid. Public school is failing a lot of kids, not just kids with SN. So you're among a small minority PP that can actually contemplate a private option.

Okay you need to take a chill pill PP. you are out of control and make no sense. I won't be responding further to your comments. have a nice day.

[Anonymous]

Good post OP. Parents get themselves crazy over labels, even when the label fits. The goal is the get your child the best support possible for his/her unique needs and to keep your child from turning off of school and feeling dejected. As a parent of a kid with SN I understand their initial reluctance, but I am always surprised by the parents who never get past it.

I have known parents who did not disclose anything and let their kids flounder rather than even get an IEP. I have known parents who went to great lengths to find the 1 clinician willing to call ASD ADHD. (Newsflash: many clinicians consider them on the same spectrum and ADHD does not imply higher functioning than ASD-even socially believe it or not. Many kids with ASD get the needed social skills interventions and by a certain point can function better socially than kids with ADHD who were not getting social help despite deficits).

As parents I think we need to alas ask ourselves

1.) Is my reluctance to accept a label about my child's needs or about my ego

2.) Am I doing the best I can t get my child the services he/she needs to thrive or even just manage?

3.) Am I accepting my child for who he/she is or for what his/her actual needs are?

[Anonymous]

Anonymous wrote: Good post OP. Parents get themselves crazy over labels, even when the label fits. The goal is the get your child the best support possible for his/her unique needs and to keep your child from turning off of school and feeling dejected. As a parent of a kid with SN I understand their initial reluctance, but I am always surprised by the parents who never get past it.

I have known parents who did not disclose anything and let their kids flounder rather than even get an IEP. I have known parents who went to great lengths to find the 1 clinician willing to call ASD ADHD. (Newsflash: many clinicians consider them on the same spectrum and ADHD does not imply higher functioning than ASD-even socially believe it or not. Many kids with ASD get the needed social skills interventions and by a certain point can function better socially than kids with ADHD who were not getting social help despite deficits).

As parents I think we need to alas ask ourselves

1.) Is my reluctance to accept a label about my child's needs or about my ego

2.) Am I doing the best I can t get my child the services he/she needs to thrive or even just manage?

3.) Am I accepting my child for who he/she is or for what his/her actual needs are?

It's not ego. It's the fact that mislabeled children rarely get the help they need.

It's much, much tougher to go in and fight against the grain. It's so much easier to roll over and let them label your child with whatever suits their purpose.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

OP, what a crock of lies you are spreading. As someone who had to fight tooth and nail to keep a false ASD diagnosis off my kid, I know it makes a huge difference if you are incorrectly labeled. I've seen it firshand.

Parents should ALWAYS insist on accurate labels, even if lazy, incompetent school personnel try to tell you otherwise. I've gotten every service we've needed AND forced them to use the correct label.

You didn't actually read any of the original post. A medical diagnosis ISN'T the same thing as a designation to receive IEP services. It's not a crock of lies; it's the law. You can receive an IEP for only the following:

• autism;
• deaf-blindness;
• deafness;
• emotional disturbance;
• hearing impairment;
• intellectual disability;
• multiple disabilities;
• orthopedic impairment;
• other health impairment;
• specific learning disability;
• speech or language impairment;
• traumatic brain injury; or
• visual impairment (including blindness).

So your child may not have autism, but unless the school can attribute one of the above 13 potential diagnoses, he won't get an IEP either. That is my point. Until the law changes and has more inclusive language, the "label" the school uses may not be accurate but will get you accommodations and services.

But honestly, PP if you've been fighting tooth and nail to keep off an ASD diagnosis from your child, my guess is you are fighting the wrong battle.

Oh no, I read your whole post the first time.

You left out Early Childhood Developmental Delay. In my state you can be under that until you are 7 years old. At 7, my son was switched to Language Impairment. Specific Learning Disability also would have worked.

I well know a medical diagnosis isn't the same as an educational label. I had multiple medical assessments of my child saying he was not autistic, but instead severely language impaired, with processing issues and learning disabilities. But school districts do whatever is easiest for them. So if they have invested their resources in an ASD program, that's where they want to throw as many kids as possible. Very few outsiders or even parents understand the difference between school labeling and medical diagnosis, though. Our school district outsources a lot of services, so to have an incorrect autism label leads to a whole lot of wasted, unhelpful therapies and approaches.

My school district personnel was also under the false assumption that Language Impairment would only get you speech therapy. They were wrong, of course; any tick of any of the categories gets you ALL the services a child needs to access the curriculum. It took a parent with guts like me to stand up to them for them to realize they weren't following the law.

I've met only one parent who was happy they accepted an ASD label for their language-impaired child. The rest curse the day they let themselves be talked into it by the schools, or even doctors who were only trying to "help" because the inflated diagnosis brought more services.

x's 1000!

Our MCPS middle school just tried this shit with us. This was after two COMPREHENSIVE, private neuro-psych evaluations (one just completed a couple of months ago) + detailed report from a top KKI developmental pediatrician stating otherwise...and 5 previous years of IEP meetings in his MCPS elementary school where this was never discussed or mentioned. Even after all of this, the school "psych" (insert under-breath cough here) insisted that we agree to adding the ASD label to DS' IEP at our last 3 year review. I flat out told them that I would absolutely not allow it or ever agree to it and that if it meant that they would have to pull his services, then they had my permission and invitation to do so as we were already supplementing with private tutoring and other therapies.

I am so happy that I stood my ground and advocated for DS because we are currently applying to various private schools and I know that they would not even give him a chance with the ASD label in his IEP. These schools have more applications than seats and are looking for reasons to NOT admit your child, and this gives them an easy out - even if your private evaluation does not state ASD.

And I feel badly for those children who's parents do not know better or trust that their school is truly trying to do what's best for their child. I used to believe this, but then later realized how sadly naive I had been all those years. My DS is just an experiment to them.

How do you know?

We had lunch this week with the Ditector of Development at an Ivy. It's all about grades and test scores and by the time your child is past elementary, they have an academic record for the schools to based their decision on. Not sure why you think private schools will discriminate solely on the basis of having ASD as a disability but not other disabilities?!? They don't care what the disability is as long as the student can do the work (with reasonable accommodation).

Most of the top private schools in the country explicitly state that they do no discriminate for disabilities in their mission statement.

[Anonymous]

Anonymous wrote:

Anonymous wrote: Good post OP. Parents get themselves crazy over labels, even when the label fits. The goal is the get your child the best support possible for his/her unique needs and to keep your child from turning off of school and feeling dejected. As a parent of a kid with SN I understand their initial reluctance, but I am always surprised by the parents who never get past it.

I have known parents who did not disclose anything and let their kids flounder rather than even get an IEP. I have known parents who went to great lengths to find the 1 clinician willing to call ASD ADHD. (Newsflash: many clinicians consider them on the same spectrum and ADHD does not imply higher functioning than ASD-even socially believe it or not. Many kids with ASD get the needed social skills interventions and by a certain point can function better socially than kids with ADHD who were not getting social help despite deficits).

As parents I think we need to alas ask ourselves

1.) Is my reluctance to accept a label about my child's needs or about my ego

2.) Am I doing the best I can t get my child the services he/she needs to thrive or even just manage?

3.) Am I accepting my child for who he/she is or for what his/her actual needs are?

It's not ego. It's the fact that mislabeled children rarely get the help they need.

It's much, much tougher to go in and fight against the grain. It's so much easier to roll over and let them label your child with whatever suits their purpose.

Says who?

As a parent, I did all the right things, caught signs of delay early, did all the EI interventions, went to developmental pediatricians and the psychologists for evaluations and testing. My kid has complex diagnoses and is not autistic. I thought getting an IEP for school would be a cake walk to get him the help he needed.

Boy was I wrong. I did not understand why the school district kept bringing up autism. I did all the leg work for them had a stack of reports. I was frustrated, angry, tired, had moments of doubt--were all these experts wrong?

For those who don’t want the autism diagnosis b/c their kid would not get into such and such private school. It’s great you have that option. For those who insist that a medical professional misdiagnosed their child, I don’t know if you’re in denial or if the diagnosis is accurate. You however, have the option to re-test, re-assess, re-evaluate.

So when private school isn't an option and you already know what your kid's actual diagnoses are, where do you go from here? When your kid doesn’t fit neatly into a checkbox, you can get into a Mexican standoff with the public school or you can negotiate for what your kid needs. Just getting that educational designation of any kind means nothing. It is still a struggle to get appropriate supports. It's never ending and exhausting.

Once I understood why the system works (or doesn't) the way that it does, is how I came to my version of “How I Learned to Stop Worrying and Love the Bomb.” I am and have always been my kid’s biggest and best advocate.

[Anonymous]

Just FYI, an actual medical autism diagnosis would have been very helpful in term of early intervention. Without it you don't get as much speech, OT, or behavioral/educational services covered. But oh well. Sign of weakness on my part.

[Anonymous]

Anonymous wrote:Just FYI, an actual medical autism diagnosis would have been very helpful in term of early intervention. Without it you don't get as much speech, OT, or behavioral/educational services covered. But oh well. Sign of weakness on my part.

Not always. DC gives everyone under 5 yrs old, k age, an iep under developmental delays even if there is a medical diagnosis for ASD.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

OP, what a crock of lies you are spreading. As someone who had to fight tooth and nail to keep a false ASD diagnosis off my kid, I know it makes a huge difference if you are incorrectly labeled. I've seen it firshand.

Parents should ALWAYS insist on accurate labels, even if lazy, incompetent school personnel try to tell you otherwise. I've gotten every service we've needed AND forced them to use the correct label.

You didn't actually read any of the original post. A medical diagnosis ISN'T the same thing as a designation to receive IEP services. It's not a crock of lies; it's the law. You can receive an IEP for only the following:

• autism;
• deaf-blindness;
• deafness;
• emotional disturbance;
• hearing impairment;
• intellectual disability;
• multiple disabilities;
• orthopedic impairment;
• other health impairment;
• specific learning disability;
• speech or language impairment;
• traumatic brain injury; or
• visual impairment (including blindness).

So your child may not have autism, but unless the school can attribute one of the above 13 potential diagnoses, he won't get an IEP either. That is my point. Until the law changes and has more inclusive language, the "label" the school uses may not be accurate but will get you accommodations and services.

But honestly, PP if you've been fighting tooth and nail to keep off an ASD diagnosis from your child, my guess is you are fighting the wrong battle.

Oh no, I read your whole post the first time.

You left out Early Childhood Developmental Delay. In my state you can be under that until you are 7 years old. At 7, my son was switched to Language Impairment. Specific Learning Disability also would have worked.

I well know a medical diagnosis isn't the same as an educational label. I had multiple medical assessments of my child saying he was not autistic, but instead severely language impaired, with processing issues and learning disabilities. But school districts do whatever is easiest for them. So if they have invested their resources in an ASD program, that's where they want to throw as many kids as possible. Very few outsiders or even parents understand the difference between school labeling and medical diagnosis, though. Our school district outsources a lot of services, so to have an incorrect autism label leads to a whole lot of wasted, unhelpful therapies and approaches.

My school district personnel was also under the false assumption that Language Impairment would only get you speech therapy. They were wrong, of course; any tick of any of the categories gets you ALL the services a child needs to access the curriculum. It took a parent with guts like me to stand up to them for them to realize they weren't following the law.

I've met only one parent who was happy they accepted an ASD label for their language-impaired child. The rest curse the day they let themselves be talked into it by the schools, or even doctors who were only trying to "help" because the inflated diagnosis brought more services.

x's 1000!

Our MCPS middle school just tried this shit with us. This was after two COMPREHENSIVE, private neuro-psych evaluations (one just completed a couple of months ago) + detailed report from a top KKI developmental pediatrician stating otherwise...and 5 previous years of IEP meetings in his MCPS elementary school where this was never discussed or mentioned. Even after all of this, the school "psych" (insert under-breath cough here) insisted that we agree to adding the ASD label to DS' IEP at our last 3 year review. I flat out told them that I would absolutely not allow it or ever agree to it and that if it meant that they would have to pull his services, then they had my permission and invitation to do so as we were already supplementing with private tutoring and other therapies.

I am so happy that I stood my ground and advocated for DS because we are currently applying to various private schools and I know that they would not even give him a chance with the ASD label in his IEP. These schools have more applications than seats and are looking for reasons to NOT admit your child, and this gives them an easy out - even if your private evaluation does not state ASD.

And I feel badly for those children who's parents do not know better or trust that their school is truly trying to do what's best for their child. I used to believe this, but then later realized how sadly naive I had been all those years. My DS is just an experiment to them.

How do you know?

We had lunch this week with the Ditector of Development at an Ivy. It's all about grades and test scores and by the time your child is past elementary, they have an academic record for the schools to based their decision on. Not sure why you think private schools will discriminate solely on the basis of having ASD as a disability but not other disabilities?!? They don't care what the disability is as long as the student can do the work (with reasonable accommodation).

Most of the top private schools in the country explicitly state that they do no discriminate for disabilities in their mission statement.

Meaning schools like Trinity, Horace Mann, Collegiate, etc all in NYC and others like Exeter...

[Anonymous]

Anonymous wrote:

Anonymous wrote:Just FYI, an actual medical autism diagnosis would have been very helpful in term of early intervention. Without it you don't get as much speech, OT, or behavioral/educational services covered. But oh well. Sign of weakness on my part.

Not always. DC gives everyone under 5 yrs old, k age, an iep under developmental delays even if there is a medical diagnosis for ASD.

We participated in EI and had an IEP. We also supplemented with private services. If our kid had an ASD diagnosis, we would have been covered for more services and would have paid less out of pocket.

People often avoid public EI services b/c they don't want their kid given an ASD diagnosis. EI doesn't diagnose your kid and neither does the public school system. At some point if your kid needs services in elementary school or older, you will be given a label, which may or may not match any actual medical diagnosis you've received.

[Anonymous]

Anonymous wrote:

Anonymous wrote: Good post OP. Parents get themselves crazy over labels, even when the label fits. The goal is the get your child the best support possible for his/her unique needs and to keep your child from turning off of school and feeling dejected. As a parent of a kid with SN I understand their initial reluctance, but I am always surprised by the parents who never get past it.

I have known parents who did not disclose anything and let their kids flounder rather than even get an IEP. I have known parents who went to great lengths to find the 1 clinician willing to call ASD ADHD. (Newsflash: many clinicians consider them on the same spectrum and ADHD does not imply higher functioning than ASD-even socially believe it or not. Many kids with ASD get the needed social skills interventions and by a certain point can function better socially than kids with ADHD who were not getting social help despite deficits).

As parents I think we need to alas ask ourselves

1.) Is my reluctance to accept a label about my child's needs or about my ego

2.) Am I doing the best I can t get my child the services he/she needs to thrive or even just manage?

3.) Am I accepting my child for who he/she is or for what his/her actual needs are?

It's not ego. It's the fact that mislabeled children rarely get the help they need.

It's much, much tougher to go in and fight against the grain. It's so much easier to roll over and let them label your child with whatever suits their purpose.

My thoughts exactly! My DS is ASD and ADHD but labelled by school ED and as such IEP meetings consist of fighting for goals with the school saying he cannot have certain goals as they are not ED related. My son is failing all subjects, receives discipline (not help) for losing school work, not participating in class and not looking at the teacher when she is talking. She actually said in the IEP meeting "would it kill him to look me in the eyes when he is talking? He is clearly fibbing if he can't look at me"
Anyone who thinks a label doesn't matter is a fool.

[Anonymous]

PP, have you tried to re-assign the Emotional Disturbance designation?

[Anonymous]

Oh, PP. I'm so sorry. I hate when teachers tell my kid to look at them when they speak. I've seen this several times and I cringe! Some teachers, a lot actually, haven't the foggiest clue! It's so depressing.

This thread is depressing why is everyone so up in arms. We are all fighting th same fight, people! We should band together for better school choice! I wish Maryland had vouchers for charter schools. I would pull my kiddo out of the local public mess!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: Good post OP. Parents get themselves crazy over labels, even when the label fits. The goal is the get your child the best support possible for his/her unique needs and to keep your child from turning off of school and feeling dejected. As a parent of a kid with SN I understand their initial reluctance, but I am always surprised by the parents who never get past it.

I have known parents who did not disclose anything and let their kids flounder rather than even get an IEP. I have known parents who went to great lengths to find the 1 clinician willing to call ASD ADHD. (Newsflash: many clinicians consider them on the same spectrum and ADHD does not imply higher functioning than ASD-even socially believe it or not. Many kids with ASD get the needed social skills interventions and by a certain point can function better socially than kids with ADHD who were not getting social help despite deficits).

As parents I think we need to alas ask ourselves

1.) Is my reluctance to accept a label about my child's needs or about my ego

2.) Am I doing the best I can t get my child the services he/she needs to thrive or even just manage?

3.) Am I accepting my child for who he/she is or for what his/her actual needs are?

It's not ego. It's the fact that mislabeled children rarely get the help they need.

It's much, much tougher to go in and fight against the grain. It's so much easier to roll over and let them label your child with whatever suits their purpose.

My thoughts exactly! My DS is ASD and ADHD but labelled by school ED and as such IEP meetings consist of fighting for goals with the school saying he cannot have certain goals as they are not ED related. My son is failing all subjects, receives discipline (not help) for losing school work, not participating in class and not looking at the teacher when she is talking. She actually said in the IEP meeting "would it kill him to look me in the eyes when he is talking? He is clearly fibbing if he can't look at me"
Anyone who thinks a label doesn't matter is a fool.

Who diagnosed your child with ASD and ADHD? Have that person put it in writing. You need to get the diagnosis changed. Check out Wrightslaw.com and arm yourself with knowledge. You have every right to get it changed.