PPT help- PamT!
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PPT help- PamT!
We just had our PPT. They agreed to a "full eval" but not to speech and language testing. We have been told by a very respected psychiatrist that she suspects NVLD. The test that they would give- supposedly kids like my son test really well on (I think it was TOPS or something like that). I mentioned the CASL- they didn't know what that was. They said no to any SPL testing because that is "his strength." It doesn't seem right to me- because I know there are issues taht are more than executive functioning- though I'm sure those are there too- I just didn't know how to respond. I agreed "for now" to not do it. I needed more time to research. I think I asked you this before and you gave me the CASL idea. He's 8 BTW if that helps. Thanks!
TOPS is the "Test of Problem Solving." It's a great test for inferencing, drawing conclusions, and things of that nature. A lot of kids who do well on expressive/receptive language tests have difficulty with this test. From what you've told me of your DS socially I would actually be very interested to see how he would do on the TOPS. There are several tests of pragmatic abilities. I personally don't deal with pragmatics very much, so I don't know the *hot* tests in that area, but that is certainly a language issue that could/should be addressed by the SLP. What type of specific problems is he having that suggests NVLD? I might have some other ideas if you can be a bit specific as to his difficulties.
P.S. You can say that your DS would "supposedly" do well on a test without testing him. I'm frequently surprised by kids on standardized tests! Of course, I don't think stand. tests are the end-all either---just one part of the puzzle, but an important part.
Laura, I'm obviously not Pam but wanted to add a comment here -- I'm assuming you're referring to the school system in this message? If so, I just wanted you to know that as a parent, it is your right to have your son evaluated. They cannot tell you that they will not evaluate your son for speech and language if you want him to be evaluated! It also seems strange that they would tell you he would do well on the test that would be given -- like Pam said, you never know for sure how a child will do on a test until you test them! If we knew ahead of time how they'd do, why bother to test at all? Also, why must the TOPS be the test given? That surely cannot be the SLP's primary test in evaluating kids for language disorders! It doesn't sound as though the speech therapist was actually involved in this meeting -- was she? I can understand those of other disciplines not knowing of the CASL, but I can't imagine the SLP not at least having heard of it, even if she hasn't administered it before. And she must certainly have access to several different language tests that she could choose from in evaluating your son. Generally, the language test chosen is the one most likely to address the concerns; if you haven't talked to the SLP about this yet, I'd suggest doing so and seeing what she has to say. If she was involved in this meeting, I would request another meeting and ask her what language tests she has access to, tell her your language-related concerns about your son, and ask her which of her tests would address this area of concern. Then request that that test be given. Again, the school system cannot deny you an evaluation, that is your right as a parent.
John just had the social pragmatics delay now. (Also it is a test that sees if you answer questions fully.) If they didn't give him the special test for social pragmatics he wouldn't get any speech therapy. The speech teacher had to pull out the special test... got to find the name of it... because she was surprised when he got above average in understanding and talking. He still mixes up she and her pronouns. She said she rarely used that test.
Example of test.
Sophia sees a puddles. She doesn't want her friend to jump in the puddle and get her dress wet. What does she say?
John would say... Stop.
Correct Answer: Sophia: Don't jump in the puddle Mary. Your dress will get wet.
I think you are right to agree for now to get all the other testing done. You can always demand what you want when the other tests are done. Sometimes I am afraid of making enemies of the speical ed director. Sigh....
Of course the test was for a five year old I am sure it is hard the older you get...
A car is coming fast down the street. Tommy doesn't want his friend to get hit but the car. What does he say?
John would say... stop..
Tommy: be careful, there is a car coming down the road. You don't want it to hit you.
Something like that..
The school actually can, and did, deny my request to evaluate him. I can certainly take it further, which I will if they continue to do this. They were extremely adversarial. The SPL did not strike me as being very savvy. She was there at the meeting, didn't know the CASL (I mentioned it) and said that kids "like my son" tend to do very well on the TOPS. The problem is he is EXTREMELY verbal. That is very typical of NVLD. They are not getting that there are most likely language issues stemming from paralinguistics. Like I said, not very savvy and very adversarial. I wrote a letter to the principal stating I am bringing this concern to the table in October.
As far aswhy NVLD is suspected, the psychiatrist, Yale Child Study and our outside psychologist all feel it is higly probable given his developmental history. I don't know that much about it- just learning- but when I read about it I feel like this is the missing piece (and the last one) to the puzzle. All of his other dx's don't explain his difficulties with social nuance, his funny way of speaking (prosody), his difficulty reading tone of voice and body language. He does not ever do dramatic play, doesn't understand fiction, has trouble with inferencing in fiction (but great in nonfiction). He has fine motor issues, proprioceptive issues, blah, blah.... SOme of the testing the psychiatrist did pointed directly to it. She said when things come from within him he can go on and on- he told a great story about King Arthur. Then she asked about 12 kids at a party. Five didn't get an invitation. Why? He couldn't come up with a reason. He finally said they didn't get invitations (very literal) but couldn't give a reason why this might have happened. (She said problems with hypothetical). She said that was highly discrepant. She also had him play COnnect Four (he was terrible) and Othello (he was amazing). Also discrepant. I asked why- because they seemed like the same game to me. She said in order for him to play Connect Four well, he had to have a good offensive and defensive strategy (ie take the perpective of another) and for Othello he just had to have a great offensive strategy.
I shared all of this and the Director of Pupil Services (a nasty man) said that my son's strength was language and they would not give him an eval.
FUn, fun, fun....
Laura, let me rephrase what I said originally -- they cannot *legally* deny you an evaluation. Federal law states: "Each public agency shall ensure, at a minimum, that the following
requirements are met:" .... "The child is assessed in all areas related to the suspected disability, including, if appropriate, health, vision, hearing, social and emotional status, general intelligence, academic performance, communicative status, and motor abilities."
Both you and a psychologist have stated that NVLD is a suspected disability, therefore they are required to assess this area. The quotation above is from IDEA 34 CFR Sec. 300.532, and it is requirement (g), in case you need that information.
I don't understand these horrid school systems and how they run their special education programs. I worked in the public schools for six years, we had a wonderful network of speech therapists in our county that were all in the profession because we wanted to HELP kids, not leave them out there to drown, and our special ed director was very supportive -- if a child didn't fit the mold and we couldn't show standardized test scores to "prove" that they had a delay of some sort and needed services, that was okay! She said we were professionals for a reason, and if in our professional opinion a child needed speech or language therapy, then by all means, they should get it, whether there are numbers to prove it or not! Apparently I worked in an ideal setting, as that's not the story I see from parents in other places, unfortunately.
You can legally fight this and get your son evaluated and possibly even get him into speech therapy at the school for a pragmatics disorder which from your description he certainly seems to have. However, then your son will have a speech therapist who: 1) doesn't sound like she even knows anything about pragmatics so isn't going to know how to provide appropriate therapy to your son; 2) doesn't seem to care so isn't going to exert the effort to LEARN about it so that she CAN provide appropriate treatment for your son; and 3) is not supportive of you and what you feel is best for your child, and who wants their child being taught by someone like that!? So if you push it and "win" and he gets services, you really haven't won at all, because your son still isn't likely to get the help he truly needs.
If I were in your place, what I personally would probably do is just look into private therapy -- if you have a medical card it should be totally covered; if you have insurance, the clinic would be able to tell you whether or not you're likely to be covered and what your co-pay would be. If there's a university anywhere near you with a speech and language program, that's usually an inexpensive way to get therapy, it would be from graduate students but they would be supervised and the professors would ensure your son was getting the right therapy. There's also the evaluation of fighting a legal battle with the school system to get THEM to pay for private therapy because they aren't providing an appropriate education for your son, but it's a tough battle to fight, so I don't know if that's the route you will want to go or not... if you do, the school system ought to have a parent advocate who can help walk you through that.
Is it definitely the TOPS that she said she would be giving him, if she were to test him at all? There is a similarly named test called the TOPL (Test of Pragmatic Language). Regardless, I don't know why the fuss about testing him -- it might take a whole hour out of her day and whether he performs well on it or he doesn't, it would provide you with specific information about what he can and cannot do rather than some vague comment about what "kids like him" usually do... and if he does great on it, then he doesn't qualify and that's the end of things, so if she truly thinks he's going to do fine on it, why not just test him and have it over and done with?
I think it's possible that she's afraid that you're right and he WILL perform poorly and she doesn't know how to treat the disorder and that's why she'd rather talk you out of testing him than test him and then have a child on her caseload with a problem she doesn't know how to treat. Just my guess...
Good luck wading through this tough situation... it really saddens me to see people in a field that is all about helping kids acting like this and leaving kids that don't fit the standard mold of disabilities out in the cold to fend for themselves. It just isn't right.
34 CFR Sec. 300.532
It was actually the director of pupil services who demanded that he not be tested. The room was SOOO hostile, I'm sure she felt she had to say something that would get her out of testing him at the risk of her job. To be fair, I'm not sure she was able to really give her honest opinion. Who knows. UGH. My son has som many diagnoses at this point (5). NVLD would be 6. The idea of more private therapy really would put me over the edge. We have so many appointments as it is. My insurance would cover it- that's not the problem. TIme and family are the issue. Also, the lack of down time for him. I just want them to test him. We need to wade through this mess to figure out what his biggest issues are and go from there. That way we can at least prioritize. I do feel like he is going to get some quality OT at school. I really like the therapist. She's great. I ran into her today- she's already working on his case.
When is this going to get easier?! I'm so tired of fighting all the time. It's really draining. NOt to mention raising this child!
It probably isn't going to get easier. :o( The best solution to this problem of course would be for you to know how to treat all of his different problems and be able to do it ongoing throughout his daily activities, rather than going from therapy session to therapy session and interrupting your family time and overtaxing him with all this therapy work. That's what I love about early intervention; we can go in for a short time, give the parent the strategies to incorporate into mealtime or bathtime or playtime or car time, so the child has "therapy" in natural settings all day long and neither parent nor child is overstressed by all this therapy work because it's just little things worked into things you do every day anyway!
I can empathize with your feeling overwhelmed trying to wade through the mess and figure out the biggest issues and prioritize, I have several kids who are like giant puzzles and we just seem to be missing a few pieces so we can't quite solve it! It can truly be exhausting trying to sort out what is best for these kids and preserving some semblance of normal life for them and their families, as well!
Perhaps a private speech/language evaluation (not therapy, just the eval) would help you in several respects: You could get that one particular puzzle piece you say you're missing and find out exactly what his strengths and weaknesses are in this area; You could ask the evaluating SLP for tips on how to target these areas with him in daily life activities; and you could choose the therapist carefully to ensure you were getting someone who really knows their stuff when it comes to NVLD so that you get both a thorough evaluation and summary of his strengths and weaknesses, and GOOD advice on treatment.
That way you aren't infringing further upon family life by adding one more appointment a week, but you can still get some answers to your questions and hopefully get specific ways you can help your son at home, and share those ideas with his teachers, as well, if he has receptive teachers!
Laura, I totally agree with everything Zoie had to say. One thing I would add though is that you may want to contact Connecticut Parent Advocacy Group about helping you fight to have him tested in the schools if you go that route. Are there any private schools for kids with learning disabilities in your area? That would be another avenue that would allow all of his dx to be treated within the course of a school day, naturally, without shuttling him for one therapy to another.
While you DS's strength may be language in the sense of vocabulary, grammar, ariculation, narratives, etc. it seems fairly obvious based on what you're written and what I know from you that he does have some definite problems with the social part of communication.
Good luck!
Thanks to both of you! We're sort of "out" of time and money at this point, which is why we are going the home district public school route. There are private schools- but they are BIG BUCKS! I think I'm going to try asking for an independent eval next. LOL! We'll see how hard they laugh at me. His teacher does seem great- as does his school based team (with the exception of the school psychologist and SPL teacher- two kep players for my son). Also the Dir. of Pupil Services is an idiot! I may bring my dad to the next meeting as my lawyer. We'll see....
I'll let you know how we do.....
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