For special needs parents: 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!

[Journey]

I have a special needs child in that she has ADHD and Learning Disabilities. I would (and did) get all of the help I needed for her. These kids need all of the help they can get and by the sounds of it, you are not a rich person and the extras that your son might need are going to be expensive. I know alot of parents who don't get their kids the help they need because they are embarrassed, I can understand that but I don't agree with it. My daughter went through all of the people your son would see (at the dev. ped office) and that was years ago (she's 21 now, still in school) and I have, up to very recently, had to go back to those test results to get her the help she's needed. If your son can go on SSI, you will need proof of testing to back up his disabilites. Youv'e waited long enough for this testing, don't not go, that wouldn't be a good idea.

[Blue Hen]

:iagree:

 

Carole

[joannqn]

I would go ahead with the evaluations too. My son went through all of them as well.

 

Testing can help you get services through insurance and the school district.

 

Having the history can help with getting SSI if he needs it down the road.

 

Having the history will be useful to him getting help as an adult if he needs it.

 

It can also give you a label that will help you find information on how to help him. That was a big one for me. I didn't know what to look up to find the information I needed to parent/teach my son effectively. For us, what looked like severe behavioral problems turned out to be a speech and language delays so we were handling everything the wrong way, which wasn't helping. Once we worked on the real problem, the behavior righted itself. Now that he's mostly caught up on his learning delays, it is still helping me to understand that his language skills will still take a while to catch up to the rest of his academics.

[hsmamainva]

I have two children on the autism spectrum. I know that for my youngest, it's helped her in regards to therapy. We live in a small county and the school system doesn't employ their own therapists, therefore, my youngest daughter receives private speech and occupational therapy, and it's paid for by the public school system. When we were paying for it ourselves, it was costing us nearly $200 a week, so it's quite a savings!

 

Now, not all school systems offer therapy to homeschooled children, but they might.

 

For my oldest son, having that label will help him when he reaches college age (granted, it's a few years down the road!) but it will enable him to receive any special help that he might need (be it extra tutoring, testing modifications, etc.)

 

It's also helped in my homeschool because I'm able to know what areas they each need help with and where to find appropriate materials.

[LNC]

Has he been diagnosed to be on the autism spectrum, or do you have suspicions? If he hasn't been formally diagnosed I would pursue that. You may be surprised and relieved that he is not.

 

I think it is worth it even for your own research into methods, progams, books etc to help your child. My reading about autism has made me a much better mother.

[Jennefer@SSA]

Has he been diagnosed to be on the autism spectrum, or do you have suspicions?

 

He has not formally been diagnosed as being on the spectrum but all his therapists when he was younger and we were in ECI said they saw this in him. I have a Special Education degree and I see much of this in him as well. But no "official" label as of yet.

 

One of the things I struggle with is the fact that our society is a little label happy. If my son is truly Asperger's he would be very mild even within that designation. It can be a very subjective diagnosis when a child is mild. What one doctor calls severe ADHD another calls Aspergers. Please no throwing tomatoes here! I do not want to start a debate. I just have been in the Special Ed field long enough to see this happen time and again. One child goes to one doctor and ends up with one label and the next doctor says something else and on and on it goes.

 

I guess that is a big part of my dilemma. I truly want a label if it's warranted but DO not want any unnecessary labels that would be hard to get rid of later, KWIM?

 

The ADHD is severe...very severe. I just don't know about the ASD.

 

Thanks for all the responses so far. They've been very helpful.

[Pamela H in Texas]

I skipped it and regretted it. I say go ahead and get it. If it turns out you didn't really need it, no biggie. And no one has to know what dxes he got at 7 if they don't make a big enough difference when he's older. Also, if he gets soc security help, then you'd have some of the money towards his therapies (if necessary) and possibly medicaid to help also. Don't be embarrassed to use whatever you can get to help him if he needs it.

[Parrothead]

I skipped it and regretted it. I say go ahead and get it. If it turns out you didn't really need it, no biggie. And no one has to know what dxes he got at 7 if they don't make a big enough difference when he's older. Also, if he gets soc security help, then you'd have some of the money towards his therapies (if necessary) and possibly medicaid to help also. Don't be embarrassed to use whatever you can get to help him if he needs it.

:iagree: I don't have a special needs child, but I have to say I agree with Pamela. Get the testing done to rule out anything or get a definitive diagnosis so you know which way to go in the future. If things are very mild, others may never know he has a label.

 

I wouldn't make a big deal out of any diagnosis either - not at his age. I'm not even sure I'd tell him.

[newbie]

He has not formally been diagnosed as being on the spectrum but all his therapists when he was younger and we were in ECI said they saw this in him. I have a Special Education degree and I see much of this in him as well. But no "official" label as of yet.

 

One of the things I struggle with is the fact that our society is a little label happy. If my son is truly Asperger's he would be very mild even within that designation. It can be a very subjective diagnosis when a child is mild. What one doctor calls severe ADHD another calls Aspergers. Please no throwing tomatoes here! I do not want to start a debate. I just have been in the Special Ed field long enough to see this happen time and again. One child goes to one doctor and ends up with one label and the next doctor says something else and on and on it goes.

 

I guess that is a big part of my dilemma. I truly want a label if it's warranted but DO not want any unnecessary labels that would be hard to get rid of later, KWIM?

 

The ADHD is severe...very severe. I just don't know about the ASD.

 

Thanks for all the responses so far. They've been very helpful.

 

My thinking is labels are for remediation. If you have a label, it might be beneficial to know how to help that child.

 

Sometimes labels can hurt too. In the case of my niece she was labelled by ps as MR, but she has CAPd. I had her dx'ed and had school changed. Which beneficial.

 

Now , since she is 20 and transitioning, harder to get services for CAPD, but would have been easier w/MR. Autism is a label that would get more services.

 

So, if you are looking for help, now or in future, a label can help, but can hurt.

 

Does that make it as clear as mud?

[tibbyl]

Jennefer, I am one of the parents who decided to forego additional diagnoses or professionally-administered therapies. Due to sensitive nature of information, I have PM'd you to spell out our methods used and reasoning behind our regret-free decision.

Edited December 3, 2008 by tibbyl

[Jennefer@SSA]

Thanks...I'll head over and check now. :)

[Kathy in MD]

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!

 

I haven't read all the other posts, but do keep the appointment. You've already waited 11 months, you don't want to wait another 11 to get help for him.

 

If money is an issue, after a full diagnosis, you can ask the doctor to help prioritize what issues to tackle first. Also some problems can be relatively inexpensive to treat if your ds suffers from them.

[newlifemom]

PM'ing you.