Doctor visit not what I hoped for.........now what?

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Well I took my 16 year old and my 7 year old in to the psychologist yesterday. The 7 year old did ok with her testing to check on her reading problems but definitely needs the school to do something or as the doctor says they are going to take small problems and turn them into very big ones. She will write up another set up recomendations for me to take to the school. They did nothing with the first ones so my hopes are not high for these either.
We talked about my 16 year old and I explained that the meds really didn't do a whole lot other than the Abilify lessening his anxiety a little. She agreed that if we don't help him now we are going to lose any chance at an education and a productive future. I agree, but when I asked her about the Aspergers she said," it doesn't matter what label I put on him it isn't going to help him get services." Maybe it won't but a diagnosis would give me a better case for the complaints and possible lawsuit I'm gearing up for. I also think it would have been good for him to know, so that he could understand himself more. She wrote a letter for me to take to school with recomendations as well, and it certainly sounds like Aspergers she is talking about, but it has no diagnosis on it. She explains that his problems with visual spatial and part whole reasoning are the reasons for his math and other academic failures. She also talks about signifigant social distress and anxiety in the school setting and that he is extremely overwhelmed by the noise and social demands.

After the first testing I brought the paperwork to school with me, but it was not a complete report with recomendations and a diagnosis like you would need for an IEP meeting. I recieved one of these with my daughter. Maybe she didn't realize this as her assistant who does the testing and reports did this part. I called and told her this when I read the letter to school and it wants to know why he has recieved no testing or evaluations. I don't know I am so confused and at this point all I know is that my son's future is slipping away.

Should I try and find another doctor? It is really hard where we live. If you find a doctor that is qualified to evaluate my kids they are 2 to 3 hours away and the waiting list is 6 months or more or like my 2 1/2 year olds doctor they go back to the state where they were visiting from under the VA Share Program. I would drive to the ends of the earth just to find one doctor I could take all the kids to. This is so hard. Why should I have to fight just to give my kids a chance?

My heart breaks for you.

I had a similar meeting with my sons doctor, as far as giving a DX, he did not understand what the benifit would be. I very pointedly said, "the school will not give him the support he needs without a label". That made him do a right turn and write out a letter with his full cooperation.

You need another doctor. Even if it is just to get the DX, you need need need it. Even if you have to make an overnight trip, especially with your son, it just cannot be put off anymore. Find a good doctor. If you have to wait 6 months, then you have to wait 6 months. Yes, you are close to loosing him, I agree with that, but 6 months is not unrecoverable, at least, it is better then no result.

Perhaps contact the doctor again, and state, "without an AS DX, the school will not help, is there anything you can do?". Also state that if your son has AS, he will be better able to understand himself with the label. But push on the first point, regarding the school the hardest.

I think some doctors are oblivious to the fact that schools will not implament their suggestions, without the label.

Don't give up, you are so close! Even if you don't feel like you are!

I would try to find a psychiatrist or psychologist who specializes in Asperger's. By accident, I found someone who is an expert in Asperger's and she diagnosed me rather rapidly. She actually said I was very easy to diagnose. Now I finally have a psychiatrist and a psychologist who are helping me to deal more effectively with it. Try to seek out a new health care professional.

I don't understand medical people that are unwilling to dx if that's what they see. It's like she's refusing on principle.
My son's pediatric neurologist is the one who sent me to the public schools to get his educational diagnosis to get him started in Early Intervention ASAP. (toddlers don't need a medical dx to get services with the schools) Granted, my son is autistic and not Asperger's. But it was a priority for the Doc to give me the right information.
Are you sure the psychologist is qualified to diagnose? Maybe she can't and assumes you know that ?

Don't give up on that doctor, you can prevail in getting a Dx if you are persistant in asking for one, with th justification that it is the only way to get his services in school, which the doctor obviously understands.

But at the same time do what you can with a specialist, ask to be put on a list for cancellations, do what you have to to get him seen and diagnosed.

Once you get the Dx you can refuse to allow the school to graduate him as a result of them missing the opportunity to identify his LD, and that may get you more time to get him assiatance - in effect pushing back the clock, which would help IMO.

I don't think you need any kind of specific medical report to request the school to do testing to determine if they need an IEP.

An Aspergers dx may not be likely to get you any better services. My son has a label of autism and that did not produce much - except wanting to put him in a self contained calssroom for emotional impaired kids. The AI class was only for kids who were severely effected and only worked on basic skills. Other parents complain that the PDD-NOS label does nothing either. Most schools can actually completely ignore the doctor's MEDICAL label because that does not automatically mean it effects learning. Then they do their own "testing" and if there is a dispute then you have to request a third party to test and so on. This takes lots of time. However, it is a misnomer that simply having a label from a doctor opens the door to all kinds of services. It may depends on what state you are in though.

It is a reality though that labels are determining services - but it is not supposed to be that way. IEP is supposed to be individual - and services are supposed to be what the student needs. However I think that is what is driving up the number of kids on the spectrum - some of whom I have seen on other lists seem to not have spectrum impariments. One doctor who was labeling lots of kids on the spectrum is now being disregarded by the schools no matter who he qualifies. So perhaps some of the doctors are hesitating to use that label. I was reading another thing too where in one of the states they are requiring doctors to report kids on the spectrum - so that is another thing to consider to make sure the label is accurate.

if you trust your school system, i'd ask them to test him ~that is, if you can't get the doc to see that a dx will help get your son the services he needs. most schools won't help unless there's a dx on the table

Hey all,
Thanks for the feedback. I was so down after the doctor visit. This has been such a rollercoaster of emotions. You see I have been fighting "the system" so to speak for the last 2 years because of my now almost three year old son. This is what I deal with as far as the people who are supposed to help us. The Infant and Toddler Program that should have stepped in to help, (especially because my little guy needed physical therapy and was already in thier system), instead refused to take action on anything I asked them to. No tests or evaluations were ever ordered by them, even when he was 6 months old and I begged them for a hearing test because my son would not respond to his name and didn't react properly to noise. After trying for almost a year with no results is when I was lucky enough to find a visiting Dev. Ped. who specialized in autism. He was dx'd at 18 months with autism spectrum and to this day still gets nothing. I went to the school system and although they did some evaluation and found some issues and other evals. were incconclusive, they had to wait till he turned two. At two they decided not to do anything for him and never gave him any further evaluations. It was right around this time that I had taken my 7 year old daughter to another doctor and she was tested and dx'd with HFA with ADHD, it was also recommended that they rule out an LD and dyslexyia. They gave me all the paperwork I needed to have an IEP written up, I had the meeting and the school system did nothing. Telling me things like "she is too smart to be autistic", "You don't want to give her a lifelong label of autism", " we have to classify them in any other way(ie:dev. delayed) before giving them a classification of autism". They sat and told me how they didn't think she was autistic and when I asked why a doctor would tell me she is, they said it was the new fad. So she gets nothing and when I request help because she is still behind in reading and there seems to be an LD and possibly dyslexia still present, they tell me she is doing ok. Shortly after this is usually when they tell me she is going to summer school. They give me answers and make promises that string things along just long enough so that I can't file a complaint. Even when I finally got the Infant and Toddler program to agree that there was no way my son could just go into a Head Start clssroom at three and they made the recommendation to the school system to place him by this past March, it was ignored. So I am up against a brick wall.

This is one of the reason that a dx would so important on my 16 year old. Ok maybe they can deny when one of my kids is dx'd, maybe when two are, but can they really deny when three are? I don't know maybe this is the wrong thinking, maybe I am just hoping that if it is shoved in thier face enough they will do something, maybe I am just being stupid.

I don't have anyone within the system that I can trust to help me, and when I run into problems with the doctor it just makes things that much harder. I was really down, but that doesn't mean I will give up. I'll find a way to make them listen and to help my kids. I am continuing to look for a specialist, maybe someone interested in the research will want to look at the family as a whole.

Thanks for listening to me ramble.

Dx'ing your eldest is not going to help with the younger two. It may confirm that you are Dxing as a "fad". The question may be askekd "how can all three be autistic?" (And it sounds like they are")

What you need to do, is line up your ducks, so in the heat of the moment, you don't loose your arguement. Make a list, of questions or myths you know they will throw at you, and have a logical response that supports your position ready.

Like:

"She is too smart to be autistic".
People with Autism can be very smart, and even have above average IQ's.
(Get some supporting facts or articles).

"You don't want to give her a life long label".
Sometimes you have to call a spade a spade. If a label is what will get her the help and support she needs to make the most in her life, then yes, I do want a label. Some Autistic children do learn to compensate and go on to live normal or near normal lives. But they need the right help and support to do so. What she chooses to do with her label as an adult, is her decision, she may choose to mostly ignore it, however at least she will understand herself better.


Don't let them put you against the wall with nonsensical arguements. I know what you are feeling, my sons school has done the same to me too!

How you come out of that meeting, you need to file a complaint. Start keeping good notes, ask to tape record the meeting, (tell them, "I get so emotional at these meetings, i forget what was said... Do you mind if I record the meeting?) This may then and there, get them speaking a different tune! Take back the drivers seat, it sounds like it may be time to escalate this situation!

I know you are right, I have known this for some time I guess. This may sound really lame but, I have been fighting for so long, I just wanted one time when I didn't have to...ya know what I mean? I have the notes, the letters, the school work all of it. I have drafts of letters ready to finalize, I just need that little bit of emotional strength to move me on. I know it will come, it always does.......I guess that's being a mom,huh.

It doesn't make sense to expect the school to act on another medical dx if they didn't for your daughter. They really are pushing you around with their stalling.
All of the answer you posted are not even relevant to the issue of assessing your kids in school and providing services. It's not their problem if your child has the wrong label. or is too smart to be autistic. heck, they are not supposed to even diagnose anyone "autistic". They assign them an educational term that indicates what specific needs they have.

Goodlord, I had the opposite trouble when my son was first assessed. In Indiana, they declared he was severe and cognitively delayed. I asked about the assessment and they assured me it would be okay, that he would get good services. Well, it was one size fits all there. When we moved to California, he was put in the wrong class and he was stuck there for 6 weeks until my husband witnessed him getting hit by another student. He had been "regressing" because he was mimicking all these nonverbal kids and having traumatic events happen.

Now having been in my 3rd state, I realize that schools don't understand IEPs and how they are supposed to work. They have these bizarre ideas of how disabled kids are supposed to be labeled and shelved.

Same thing happened to our son. He was put into a class with LFA kids and he has a verbal IQ of 142. He was the 1st child with an ASD diagnosis to be included in our city school system with an aide. His mom got rather PISSED OFF and hired the best developmental psychologist as well as worked with an advocacy agency to get him an IEP that worked.

Parents, you don't have to agree with the school system and the law is very clear that the parents' suggestions must form a large part of the IEP. Just walk out of the pointless meetings where they are offering a "slot" in a prgram. Then write a letter requesting another IEP with someone who can grant services. Get you ducks in a row and your experts lined up and demand services. Learn how to play the game.

Take a deep breath, Carolcat, being weary and wanting the struggle to be over is perfectly normal. Take along look in your mirror, See the tiger looking back? Do you think she will lay down and roll over because a NT housecat tells her there is no help for the tiger's cub? Hey I married one of these tigresses, I don't think so.

Don't hesitate to go over the school's head we did. Once we got the Dx however things moved at a smoother pace. Also remind the school officials about "No Child Left Behind",it's amazing what an implied threat can do. If Society wants they kids to fit in Society needs to be aware of its responcibilities to them.

I broke down screaming and crying at the top of my lungs last night, out of pure frustration with what we are going threw with my son. I am only saying this, to let you know that what you are feeling is normal.

We just got back from a 1 week vacation, and the very idea of having to go back to he school, AGAIN, on Monday, and do the whole smile and nod thing, while battling for the right services / IEP accomidations was just too much. I went into overload.

I am hoping it goes better then it has in the past. I wish you the best of luck.

You need to line up your ducks, and push forward (after screaming into a pillow a little) don't allow them to put you against a wall. Bring someone if at all possible, a friend, a family member, someone who is coached prior to the meeting on what needs to happen, and has seen those "lists" you have made. They should be not as attached as you are, and if you get dragged into the emotional bottomless pit they try to put you in, they can stay logical and even headed.

Again, I would ask to record the meeting.

It's true - you can't give up. I haven't even BEGUN to start the merry-go-round with my son's school - but my best friend is a special ed teacher in Wisconsin, and she's already been giving me tips on how to deal with it. Truth is, I'm not looking for a special class, in fact - I want my son tested for GATE because he belongs there. What I *do* want though, is social skills classes - and I won't stop until I get them for him. I hate the idea of having to become one of "those" moms - but I will if need be.

It isn't that schools don't know HOW to do IEP's....it's that they don't WANT to. It is common knowledge that here in California - they widen the scale of "normal" so that less children qualify for services. Well, with a medical diagnosis in hand, the district would be plain stupid to ignore it - because of the "No Child Left Behind" act. USE IT.

Someone else said that as a parent, we are part of the IEP team. We certainly are. Be prepared to walk out of IEP meetings if need be, and suggest they find someone else to write up the IEP or else you'll be having an attorney call them. No district wants that - and it's far easier for them to deal with the parent than it is for them to deal with a legal advocate. As much as I hate to say it, it's the district's policy in most cases to avoid the IEP - and it's our jobs as parents to make sure that our kids get the services they need. It does put us in a precarious position, but you can't let the school dictate what is best for your child without your input, and they'll do it every time unless you know how to be heard. Even with non-aspie kids, our most important job as a parent is to be our children's advocate. Take it to heart.

"EARTH CALLING" Thank you for sharing your emotions with me, it really did help to know I'm the only one.

I do think that the main issue with our schools is that they are doing anything not to give services. There is no money here and the programs what little they have are not the best, but would still be better than nothing. I really have to get my sh*t together here and figure out what is gonna be best for the kids. I do think that with a little help my daughter can do a public school, but I am not so sure my 16 yr. old can anymore and I certainly do not think my littlest son could. I guess I have alot of research and writting to do and it's time to find an attorney. I hope I can find one who does pro bono work. My plan so far is that I am going to write out what I want for each of the kids and then back it up with supporting articles and data. Thanks all for helping me be strong.