X-Post - What is the benefit of getting an "official" label?

[Jennefer@SSA]

Here is my dilemma and I could really use some wise input from others further along this road than I. My ds7 has a doctors appt next Tuesday at Texas Children's Meyer Center for Developmental Pediatrics. We have waited for this appt for 11 months. Now I am wondering if I should keep it or not.

 

Ds7 is ADHD. That we know for certain. He also has SPD issues, although no longer severe, that complicate the ADHD. We also know he is on the Autism Spectrum. It is this last thing we are most interested in learning more about. Is he severe enough to warrant the Asperger's label or not? Also, is there anything else we may be missing?

 

As a homeschooler do I really need this label? Will it help me with insurance to get more therapies (we are currently doing none due to the fact we don't have great insurance and we would pay for everything at almost 100%)? Will it help later down the road with college?

 

If we keep the appt. he will be seen by a developmental pedi who will spend time with him as well as spend time talking to me to get "the big picture". Then she will send us on to any and all other specialists she feels he may need to see. They have OT's, PT's, Child Psychologists and just about everyone else you can imagine at their fingertips. I think the only other specialist they will want him to see is the Child Psy to evaluate further for ASD.

 

I am very confused. And added to that I still need to pay off the unexpected surgery I had last month and had to get new tires on our Suburban (not cheap!). That was the all the money and then some we had saved for this appointment. We can pay it off in installments but I don't want to do that if we decide we don't need the appt. at this time.

 

Thanks in advance!

[Michelle T]

My DS is diagnosed with ADHD, dyscalculia, and dyspraxia. These diagnoses will allow him to get accommodations if he wants to go to college and needs to take SAT or similar tests. It will allow him to have accommodations as needed in college classes.

 

It gives me some understanding in the struggles he deals with, as well as some reassurance that his problems aren't just due to my being a lousy teacher!

 

I haven't tried to get benefits from our medical insurance yet, but plan on trying to get some sort of occupational/physical therapy. I'm hoping if his doctor prescribes it, and with his diagnosis of dyspraxia, they will pay for OT.

Michelle T

[Guest JC In Chicagoland]

Jennefer

 

I think our son's are very similar. Mine is almost 7 and I am not sure if he has a Dx of HFA or Aspergers. I don't really care. But we have a long history of evaluations that give him a Dx of pragmatic and expressive delay and ADD. The school has him Dx as Autism (but that is the whole spectrum....). He just went through a whole list of tests from school. OT, SLP, Social Worker, Learning Behaviorist, School Psychologist, Nurse. The tests were pretty good and they have a fundamental understanding of him. But not to the levels I know him. I am seriously starting my study of The Well Trained Mind to start at least a part time homeschooling for him when he goes into 1 st grade. He is in Kindergarten half day so I am starting the program on a superficial basis.

 

My suggestion is to have the school do a full eval. on him. I know you are homeschooling but you are still entitled to evaluations through the schools. They will not give you a Dx but you will see where his deficits and strengths are. Now they will only evaluate on his deficits in an school setting. But this is FREE !!! So maybe start there. Then if you want more information, just delay the other comprehensive expensive exam for later in 2009. You might get all you need from the school. Call them first. Just because you homeschool does not mean you are not entitled to the therapies of the school. As long as you pay property tax in your town.....:-)

 

I love your website too....you are inspiring me to take my son out of school!!

 

Jacey Capurso

Illinois

[Niffercoo]

I would check your health insurance policy to see if they would cover therapies at all, even with a diagnosis. There is a catch-22 with insurance and autism spectrum diagnoses, at least if you're getting your insurance through a small business like my husband does. Our insurance does not cover ANYTHING related to PDD/Autism Spectrum disorder. No OT, no ST, no evaluations, no office visits, NADA. And on top of that, now that my kids have "autism spectrum" in their medical histories, they can become uninsurable if we ever lose group medical coverage. Had I known what I know now, I would not have used our health insurance when we were getting the diagnoses. I would have paid out of pocket (which is what I had to do anyway, except now the insurance company knows about the diagnoses and our rates skyrocketed).

 

As for the future, I don't know how much it will help. From the information I've gotten on this board, it doesn't seem like homeschoolers get many SAT accomodations anyway, regardless of the paper trail. The chances of my son being able to go college seem so remote considering that he's 12.5 and is still struggling through MUS Epsilon (Fractions). It's just too early to know for my little girl, but it's hard to hold up hope when she's almost 7 and can't read yet.

 

The one thing the diagnosis did help with was knowing that there was "something" going on. I'm not one of those people who does well with "Oh, this is just one of those quirky kids and I'm OK with that." I took every comment, every stare, every tantrum as proof positive that I was the world's worse parent. I literally sobbed both times when the doctors (different ones for each of the kids) told me their diagnosis. It's still hard, and in the back of my mind I still wonder if I were a better mother, maybe they wouldn't have autism. But knowing there was "something" was helpful for me.

[Niffercoo]

 

My suggestion is to have the school do a full eval. on him. I know you are homeschooling but you are still entitled to evaluations through the schools. They will not give you a Dx but you will see where his deficits and strengths are. Now they will only evaluate on his deficits in an school setting. But this is FREE !!! So maybe start there. Then if you want more information, just delay the other comprehensive expensive exam for later in 2009. You might get all you need from the school. Call them first. Just because you homeschool does not mean you are not entitled to the therapies of the school. As long as you pay property tax in your town.....:-)

 

Jacey Capurso

Illinois

 

This does vary by state law. In Georgia, we are not entitled to services as a homeschooler. We are classified alongside "Parentally placed private schoolers" and are eligible for a fixed dollar amount of services based on a formula, and this varies by county. When I called 2 years ago, our county was offering $1500 per child, but the evaluation had to come out of that money, so basically there was nothing left if your child did manage to qualify.

 

I know that many states are different though. A call to your county board of education would be a good first step if you're not familiar with homeschool laws (related to the IDEA act) in your area.

[Jennefer@SSA]

Thanks for the sweet words about my blog. Homeschooling a special needs child can be quite a challenge and that's what I try to share - the good and the bad. I want to be real and not yippy-skippy (Did I really just use that phrase?:D). I am so glad it has encouraged you. That's one of the reasons I do it! :)

 

Thanks for your advice for the schools as well. It is not an option for us here to have him evaluated and honestly those are exactly the people I would NOT want to have his information. Currently we are very lucky in Texas not to have any restrictions on homeschoolers whatsoever; we don't even have to write a letter of intent to the school district! Things can change though and I have other friends homeschooling special needs children in other states with very strict rules. If the state does not feel their children are meeting their goals they can put the child in school against the parents' wishes. Not my cuppa for sure. I am hoping our freedom stays as great as it currently is but things may change and I want to be prepared just in case.

[Jennefer@SSA]

The one thing the diagnosis did help with was knowing that there was "something" going on. I'm not one of those people who does well with "Oh, this is just one of those quirky kids and I'm OK with that." I took every comment, every stare, every tantrum as proof positive that I was the world's worse parent. I literally sobbed both times when the doctors (different ones for each of the kids) told me their diagnosis. It's still hard, and in the back of my mind I still wonder if I were a better mother, maybe they wouldn't have autism. But knowing there was "something" was helpful for me.

 

I wanted to hug you after reading this..not because I pity you but because I get it! I struggle with feeling this exact same way at times, too. I really struggle with the aspect of worrying about what everyone else thinks when they see ds have a melt-down or throw a tantrum. It is really, really hard.

 

Thanks for sharing and I am calling my insurance right now to find out if an Autism dx would get us any therapies.

[Niffercoo]

I wanted to hug you after reading this..not because I pity you but because I get it! I struggle with feeling this exact same way at times, too. I really struggle with the aspect of worrying about what everyone else thinks when they see ds have a melt-down or throw a tantrum. It is really, really hard.

 

Thanks for sharing and I am calling my insurance right now to find out if an Autism dx would get us any therapies.

 

Jennefer, if you haven't already called, you might need to use the term 'Pervasive Developmental Disorder' when you ask. That's the umbrella term for autism, aspergers, etc.

 

I hope you are able to decide what to do. Austin was almost 10 before we finally got his diagnosis. That's a long time to think you're a bad parent, and a long time for a child to be continually frustrated that they can't behave the way you are wanting them to. I think we're just now beginning to undo the emotional damage (for parents and son) that all of those years of not knowing did to us.

[Guest JC In Chicagoland]

This does vary by state law. In Georgia, we are not entitled to services as a homeschooler. We are classified alongside "Parentally placed private schoolers" and are eligible for a fixed dollar amount of services based on a formula, and this varies by county. When I called 2 years ago, our county was offering $1500 per child, but the evaluation had to come out of that money, so basically there was nothing left if your child did manage to qualify.

 

I know that many states are different though. A call to your county board of education would be a good first step if you're not familiar with homeschool laws (related to the IDEA act) in your area.

 

Coming from IL - I am sad to hear that they are giving you all so much trouble. Having a set dollar amount for "private / home school" kids is something I have never heard of. In IL, they are more than willing to give appropriate therapy to kids who need it regardless if they are in the public or private school. If your child is home schooled, you can bring him to the public school for additional SLP, OT, etc. There is no set dollar amount. The schools are also pretty open to homeschooling, even allowing the child to attend public school part time while home schooled the other.

 

Having a special needs child is hard enough. I am sorry you all have to feel on the defense with your local educators. I will admit, we did move here from NJ and they were a lot more difficult to deal with there. I don't absolutely love the IL school we are in but they are at least trying. In NJ we had lawyers and the whole situation was such a mess. I was more than happy when my husband had to transfer to Chicago. (My family is here too.)

 

Also, my HFA son has a seizure disorder too. If you want to read a great book, find "Seizures and Epilepsy in Childhood, A Guide" by John Freeman, MD. He is a doctor out of John Hopkins. Also any book by Orin Devinsky MD. They both write for the parent, not the medical community. This will help you get a basis for what is actually going on when your child has a seizure disorder. These books have helped me speak more intelligently with my son's neurologist. I am able to understand the BASICS of why he wants to medicate my son and what they are seeing on the EEG. (MY son has an abnormal EEG, but not obvious seizures. Just epileptic activity while he sleeps.) This is a tough one to deal with...but you can do it. :Angel_anim:

 

Best wishes.

Jacey

[EKS]

Official diagnoses can help when you talk to people about your son's difficulties. A diagnosis provides a term that people are familiar with to understand what is wrong and can sometimes qualify your child for certain services. However, be cautioned--an autism diagnosis (including Asperger's) can make it difficult for your child to get health insurance and will (from what I've been told) exclude him from military service.

[AngieW in Texas]

I haven't pursued getting an official diagnosis for my two older girls. I have an unofficial diagnosis of Asperger's for both of them. My oldest does have an official diagnosis of ADD-inattentive, but that doesn't affect her insurability. My middle dd is more obviously Aspie.

 

My youngest is not spectrum at all, but is dyslexic. She has been tested through the ps every three years to build a paper trail in the hopes that we will be able to get accomodations on the SAT/ACT when the time comes (if accomodations are needed). We will have to lay out $1500 to do a full neuropsych eval when she's in 10th grade, because the "official" diagnosis has to be no more than 3 years old for the college board tests.

[cillakat]

I haven't pursued getting an official diagnosis for my two older girls. I have an unofficial diagnosis of Asperger's for both of them. My oldest does have an official diagnosis of ADD-inattentive, but that doesn't affect her insurability. My middle dd is more obviously Aspie.

 

My youngest is not spectrum at all, but is dyslexic. She has been tested through the ps every three years to build a paper trail in the hopes that we will be able to get accomodations on the SAT/ACT when the time comes (if accomodations are needed). We will have to lay out $1500 to do a full neuropsych eval when she's in 10th grade, because the "official" diagnosis has to be no more than 3 years old for the college board tests.

 

there was a recent lawsuit wrt that specifically.....

 

it seems like we're gaining ground since there is no evidence that dyslexia goes away. Or does anything else that would necessitate new testing every three years;p

 

K