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

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

+1. I am having a lot of trouble understanding this PP who seems to think that all "services" can work for all kids no matter the actual diagnosis.

The pp is saying it is not worth fighting the educational label under which you get an IEP. There are 13 educational labels for obtaining an IEP + developmental delays for younger children. So all the hundreds of medical issues and diagnosis have to fit into one of those 14 categories to obtain an IEP. Obviously very few people are going to get an exact match to their diagnosis.

The whole point is to get an IEP - Individual Education Plan.

After getting an IEP, then you decide on what services and supports is needed for that particular child with the rest of the IEP team. THAT is what is worth spending your time fighting for NOT dithering over the education label that got you the IEP. The individual education plan is what determines what supports and services your child receives not the education "label". The IEP team (parents are members) comes up with the IEP not the education label.

It is very much worth the expense of hiring an educational consultant/dev ped/neuropsych to help you get your child the best IEP possible and since most parents have zero experience with IEPs hire an expert to help you ... And make sure that the IEP is followed.

Not everyone can afford the expense of a lawyer or advocate. For us, by the time we paid for an advocate, we might as well pay for private school and services, which is what we did (our insurance picks up most of the expense and co-pays are reasonable). If I spent $6 on an advocate and a small private, which gives my child a very small class size and personal attention is only $12, sadly its not worth the fight. (we are lucky that is an option for us).

The label is important. You can argue its not, but you have never been in some of our situations where it has impacted our kids. I was pushed to ABA rather than intensive speech. Did it for a few months to cooperate and realized it was a waste and went back to intensive speech. I'm too tired from all the running, tutoring my child, etc. to want to take on another fight with people who barely know my child.

If you decide to spend the money after your DC finishes preschool, have the lawyer/advocate fight for the services/supports in the IEP. It'll be money better spent than fighting over the education label.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

+1. I am having a lot of trouble understanding this PP who seems to think that all "services" can work for all kids no matter the actual diagnosis.

The pp is saying it is not worth fighting the educational label under which you get an IEP. There are 13 educational labels for obtaining an IEP + developmental delays for younger children. So all the hundreds of medical issues and diagnosis have to fit into one of those 14 categories to obtain an IEP. Obviously very few people are going to get an exact match to their diagnosis.

The whole point is to get an IEP - Individual Education Plan.

After getting an IEP, then you decide on what services and supports is needed for that particular child with the rest of the IEP team. THAT is what is worth spending your time fighting for NOT dithering over the education label that got you the IEP. The individual education plan is what determines what supports and services your child receives not the education "label". The IEP team (parents are members) comes up with the IEP not the education label.

It is very much worth the expense of hiring an educational consultant/dev ped/neuropsych to help you get your child the best IEP possible and since most parents have zero experience with IEPs hire an expert to help you ... And make sure that the IEP is followed.

Not everyone can afford the expense of a lawyer or advocate. For us, by the time we paid for an advocate, we might as well pay for private school and services, which is what we did (our insurance picks up most of the expense and co-pays are reasonable). If I spent $6 on an advocate and a small private, which gives my child a very small class size and personal attention is only $12, sadly its not worth the fight. (we are lucky that is an option for us).

The label is important. You can argue its not, but you have never been in some of our situations where it has impacted our kids. I was pushed to ABA rather than intensive speech. Did it for a few months to cooperate and realized it was a waste and went back to intensive speech. I'm too tired from all the running, tutoring my child, etc. to want to take on another fight with people who barely know my child.

If you decide to spend the money after your DC finishes preschool, have the lawyer/advocate fight for the services/supports in the IEP. It'll be money better spent than fighting over the education label.

You WILL NOT get the right services with the wrong label. Labels drive services, even when they aren't supposed to.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

+1. I am having a lot of trouble understanding this PP who seems to think that all "services" can work for all kids no matter the actual diagnosis.

The pp is saying it is not worth fighting the educational label under which you get an IEP. There are 13 educational labels for obtaining an IEP + developmental delays for younger children. So all the hundreds of medical issues and diagnosis have to fit into one of those 14 categories to obtain an IEP. Obviously very few people are going to get an exact match to their diagnosis.

The whole point is to get an IEP - Individual Education Plan.

After getting an IEP, then you decide on what services and supports is needed for that particular child with the rest of the IEP team. THAT is what is worth spending your time fighting for NOT dithering over the education label that got you the IEP. The individual education plan is what determines what supports and services your child receives not the education "label". The IEP team (parents are members) comes up with the IEP not the education label.

It is very much worth the expense of hiring an educational consultant/dev ped/neuropsych to help you get your child the best IEP possible and since most parents have zero experience with IEPs hire an expert to help you ... And make sure that the IEP is followed.

Not everyone can afford the expense of a lawyer or advocate. For us, by the time we paid for an advocate, we might as well pay for private school and services, which is what we did (our insurance picks up most of the expense and co-pays are reasonable). If I spent $6 on an advocate and a small private, which gives my child a very small class size and personal attention is only $12, sadly its not worth the fight. (we are lucky that is an option for us).

The label is important. You can argue its not, but you have never been in some of our situations where it has impacted our kids. I was pushed to ABA rather than intensive speech. Did it for a few months to cooperate and realized it was a waste and went back to intensive speech. I'm too tired from all the running, tutoring my child, etc. to want to take on another fight with people who barely know my child.

If you decide to spend the money after your DC finishes preschool, have the lawyer/advocate fight for the services/supports in the IEP. It'll be money better spent than fighting over the education label.

You WILL NOT get the right services with the wrong label. Labels drive services, even when they aren't supposed to.

If you feel that your input is ignored or disregarded by the IEP team and your child's needs are not being met by the IEP, get an advocate to help with the IEP.

Good luck!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Right, PP you can submit all the outside evaluations you want to the school district. As I said they don't have to accept any of the findings.

Then you fight. Tooth and nail.

Since you think its that simple, please help the rest of us. Since it shouldn't take more than a few hours as it is so so simple, I'm sure you'd volunteer your time.

Not the PP you're responding to but I've got a lot of experience with this. I'd be happy to chat with you off thread. After having invoked my right to an IEE (because we disagreed with how the school was proposing to respond to our DC's disabilities) and filed a state complaint, I'm very comfortable with taking a stand. FCPS has made me what I am and I'm happy to talk to people who haven't cleared the hurdle I have. That hurdle can look intimidating until you actually clear it. Let me know!