Good for you for getting an outside eval. It hasn't been until just recently that my son was diagnosed. He had delays, but not significant enough for anything more then speech up until our last eval. Now he is 55 months, on the level of a 34 month old. Maybe if he had gotten help earlier I wouldn't be at this point. Like others have said, if you know something doesn't feel "right", then more then likely your intuition is spot on.
Sozzy -- YOu'll find the legal criteria for schools doing evals is on this link from Wrightslaw. You'll see that the decision cannot turn on any single test or eval.
http://www.wrightslaw.com/law/code_regs/20USC1414.html
I'm a firm believer in Mother's intuition. If you think something's not right, it probably isn't. I think having him get an outside evalutaion will make a HUGE difference. I had my son evaluated twice by two different sources. He just turned three in the beginning of November. When the school evaluated him, they were so off base. I sent them the evals I had before the IEP and by the time we got to the IEP, they were singing a different story. Their "final" draft of their evaluations was very contradictory of their initial ones and very similar to the ones I sent them. Interesting, isn't it? Also almost all the whole IEP was from the recommendations of the Dev Ped from Boston Children's. Apparently big names bring clout.
As far as how in the world are you supposed to trust these people to educate your child? When you figure that out, let me know.
The only service DS is currently getting from EI is speech, and this is what the school evaluated him for. DS was given a test called "The Preschool Language Scale-4". Is anyone familiar with this test? I watched the SLP administer the test, and can recall only TWO questions that required a verbal response from my son. 1) What do you do when you are hungry? and 2) Whose shoes are those? (answered incorrectly.) The rest of test was having my son point at pictures in a book to answer questions like "What do you do at night" (answer, point to someone sleeping) and "Which one is red?". The long and short of it is DS does not qualify based on these results, but this test did not really seem to address the social aspects of communication, which is where my son really has trouble. Sigh.....
As we discussed my concerns, the school team seemed to have answers for everything, such as:
Echololia ~ According the speech therapist, this is just to help my son process things. (I know this can sometimes be the case.)
Can't/Doesn't ask or answer questions ~ This is just because questions are hard for kids.
Incorrect use of pronouns ~ this is just because my son is only 3, it is very common in kid his age
DS Can't/Won't say hello and goodbye, nod or shake his head for yes/no etc....these are the concerns I have about DS and they completely pushed this stuff aside. And then we discussed my concerns about PPD-NOS in general. Here are a couple nuggets...
~DS's focus on laundry detergent bottles - According to the school psychologist, this is because the bottles are colorful and have rainbows on them. (Just gotta laugh here....)
~DS is nowhere close to being able to dress himself or potty train ~ Don't focus on the milestones so much, and you have to give or take a year on the milestones. For example, a milestone of 3 years means a child should accomplish the task between 2-4 years. (Again, this was from the school pyschologist.)
Thankfully, we are having an outside eval in January, so I am going to hold back until then. The really sad part is I am on the verge of wanting to believe them, and to believe my son really is just a quirky, but typically developing kid. I can see how a child in need could easily slip through the cracks of the system.
Going forward, assuming we are able to get DS a dx and then qualify for services, how in the world am I supposed to trust these people to educate my child? I guess we are sort of in a holding pattern until January, but I'd love to hear some feedback on this one. Anyone ever heard this sort of nonsense from their school district? Anyone care to comment? Wray, if you read this, I'd looove to hear your take.
Oh yeah, here is one more you all will really love. "You shouldn't worry about his development unless a problem is pointed out by someone else, like a doctor or teacher." I could go on with more insanity from these folks but I'll just stop here.
There is very little out there in regard to standardized assessment of pragmatic language skills. For a child under 3 years of age, the Rosetti Infant Toddler Scale can be utilized. It will look at some communication skills such as greetings, and closings.
One of my boys received speech therapy in EI and also one hour a week of verbal behavior ABA through EI. His main problem was speech though (and still is his main problem, he is now 7yo). He was given the PLS and did score below the cutoff on it for services. The school system also did the following tests on him when evaluating him for preschool at age 3:
Battelle Developmental Inventory (on this test he qualified for services in the adaptive domain, because at 3 he was not toilet trained, did not eat with a spoon or drink from a cup, or dress himself)
Developmental Assessment of Young Children- communication subtest (he scored about 1 1/2 standard deviations below on this)
The Devereux Early Childhood Assessment
Vineland Adaptive Behavior Scales (again he scored below the cutoff for adaptive behavior on this)
It sounds like your son is a little ahead of where my son was at that age, my son had just started to put 2 words together a couple of months before he turned 3. I'm not sure if there is a test that will assess pragmatics in children under 3, there is one for children ages 3-6 CELF Preschool-2 though. I would ask about pragmatic language testing as well, that may be an issue for your son. I also have found outside evaluations to be very helpful.
(I am fron NJ)
when you take your child for private evaluation ask your case manager for a list of district -approved doctors. The case manager should provide this for you. This way you will get your diagnosis from a doctor who is "recognizable" by the district as an expert. If he says in his eval that your son is autistic and needs this and that , the school will have a difficult time to reject his diagnosis.
When you get the diagnosis (and if a doctor says PDDNOS ask for autism diagnosis ; you may get more with diagnosis "autism" vs "pddnos") find out what the school district offers. Do they offer special schools? Would you feel OK with sending your son to school out-of-district ? Will your son have an opportunity to be exposed to NT kids? It is a long process to make a decission and you probably are looking for September placement.
But until September you may qualify for school to pay for 20 Hours ABA therapy + speech + OT. Talk what programs are provided for kids in Summer time.
Everytime you speek on the phone write down what the case manager says and send all your letters to school via certified mail. Also you can bring tape recorder to IEP meeting. I went with the lawer and it helped shool become more friendly
If you cannot afford the lawer look for a parent advocate who can guide you through. Ask for a copy of your kid's rights. ... actually the school has to offer it to you before you ask. If they did not, documet it and send a certifiied mail.
I know it is a lot of work , but squeeky wheel gets all the attention. good luck!
Megpl -- ALthough Districts and parents all WANT a medical dx, a medical dx is NOT necessary for classification under "autism." Also, a District is not allowed to REQUIRE it. When special ed law was first determined back in 1975, they PURPOSELY left out of the law the requirement of ANYTHING medical. There was a method to their madness. If the schools were allowed to REQUIRE a medical Dx, they'd be in the business of PAYING for each and every medical DX. That's because IDEA requires that the appropriate education our children get must be FREE. That means that requiring parents to pay for a medical Dx is out. That said, many, many dx's HAVE been paid for by Districts. What happens around here (LI,NY) is that a parent will come to the IEP meeting with a dx from a type of doctor the school doesn't like. For example, a typical pediatrician (yes, some are willing still to put in writing that a child has a particular autism spectrum diagnosis). The IEP team objects and then is in the position of being asked for an Independent Educational Evaluation at public expense. Around here, that costs them at least 00 a pop. "Autism," educationally, includes ALL Autism Spectrum dx's (autism, PDD-NOS, Asperger Syndrome, REtt's and Childhood Disintegrative Disorder). Although a dx is not required in the law, it's always much easier to make the argument WITH one.
Sozzy, I am glad to hear that you are getting outside evals. In my state, for a child to qualify for speech services, no other evals have to be completed. Most of the time, these children just have problems with articulation and not necessacarily expressive/receptive language. But yeah, for speech, that's all they have to do, well that and vision and hearing screener. So I am assuming that since he was receiving speech through EI that's all the school system deciding eval him on. With that one test, they look at the final quatiant or standard score. He either makes below the cut off or he doesn't. Clearly on this test, he didn't make below the cut off. If I were you, I would make sure the outside evals cover EVERYTHING. I mean, cognitive, speech AND language, adaptive, OT, PT, sensory, autism rating scales, etc. I would also go back and writie a letter to the school distict asking them to complete a FULL evaluation, meaning all the things listed above. That way, they have their own and you have one you are bringing in. With a full evaluation, if there is a delay, it will show up. Even if you can't get a label of ASD right now make sure they look at developmental delay.
I have had experience with the test they gave him but not enough to really say anything about it. I do know that is it a commonly used evaluation tool and is accepted by the speech language therapists I have worked with. I have seen it given, I have given it. If it wasn't a valid tool, meaning that if it always gave results that were not accurate, it wouldn't be so used. So you can trust that test, but you might can question if the evaluator stuck to the prompts and administering guidelines or if it might have just been an "on" day for your son. In fact, you will proably see that eval given if he contines to still get services.
Alot of times, parents think that if they go get an evluation from a hospital or another therapist that is in some other setting than the school enviornment that the results are more believable. The thing is that the same tests are commonly used. The people who give the tests in schools are just as qualified to give them as people in another setting. (I am referring to tests like the one given to your son. NOT ASD specific evalutations, the GARS or ADOS.) The results are usually pretty close if not the same. I don't like to hear parents say that they trust someone else other than the school to give evals. I am again just talking in general, not if you feel the school is not and will not provide the right evals. There are many times that requeting an outside Independent eval is justified. But I don't think that using outside people right from the get go is the right thing to do. Not that you have done that, this is to anyone who reads. I just think that sometimes parents are fooled by the different settings and think that a private pay person is better at giving the same set of tests than someone at school. The IQ tests are usually the same. Cognitve, adaptive, and language are too. I understand that some parents have trust issues and this plays in to the attitude towards school evaluations, but I just wanted to mention that it has been my experience that when students are eval'd by a another professional, they are usually given the same tests. Just seems that one or two tests become the norm for evaluating different areas.
Keep us updated. But I think you should make sure that FULL evals are being done. If you don't remember, contact whoever you need to to chagne it. Don't forget about putting things in writing.
Tzoya,
I am sharing my understanding and what we went through...
I don't have a book in front of me, but I recall that dx must be made by an expert in the field. In our case (my district) only MD (neurologist od develp.ped) can make this diagnosis. And yes, the district will pay for the diagnisis.
Since I wanted to "speed" things up I scheduled the apt. myself. The other reason was that when I (or my insurance) pay for the visit the doctor really "works for me". But since the district has a limited list of doctors that according to them are experts in autism, I wanted to make sure that I will use the "right" doctor.
I addition I paid for psychologist + speech therapyst evals etc ... their opinion was not considered by the district.
Meg
Order the book From Emotions to Advocacy by Pete Wright. It's and worth every penny. The district HAS to "consider" any outside evaluation you bring in. But that means they just have to read it, not believe it. However, you don't have to believe THEIR evals, either. You can ask them to pay for a second opinion (called an IEE). Yes, medical dx's are considered in IEP meetings. Oftentimes, they are very important. But they cannot be REQUIRED and a school district cannot be required to pay for one. In practice, many school districts DO pay for one (a diagnosis is medical, an assessment is educational. A school district can only do the latter, a doctor has to do the former). This is all very, very complicated to explain here, but the recommended book (which should become the BIBLE for all of us) does a great job of explaining EVERYTHING in plain English and giving excellent examples, including sample letters to send to the District. Every parent who ever gets an ASD dx should be IMMEDIATELY handed this book, which applies to all states because it's based on Federal laws (not to mention Pete Wright's amazing wisdom).
I wanted to say I agree with Wray on asking the school for a full evaluation and you should get one too. However, you DO NOT have to choose from their list. The psychologist only has to be liscensed. I would never choose from the schools list. Also, not commonly known is that school psychologists do not have to be certified by the psychology board, they are exempt. I was angry when I found this out. The psyc. that tested 2 of my children told me and testified in a court of law that he was board certified. The degree he has is an educational consultant. I decided to look and he was not a board certified psychologist! Not by the psychology board. By the school board. Google your state, for example, NJ psychology Board and it should link you to the board and then all you have to do is type in the name of the psychologist to find out if they are certified and have a speciality area. Make sure you put everything in WRITING and get the evaluations from both sources and see what everyone comes up with.
Good Luck and Happy New Year
Venus
Dear Sozzy: