Private neuropsychology appointment coming up

[LifeLovePassion]

Anything I should know or make sure they do properly? It is an all day event. Some parent time, then testing with DD. I'd love to hear from the pros.

 

Looking at autism, mental health, learning challenges.

[PeterPan]

Are they giving you questionaires to have other people fill out? That's one challenge with homeschooling, to make sure you have people who have seen the behaviors you're seeing so they can get it marked on forms. For us, a one day, one time impression was really misleading. Ds has days when he's really connected and days when he's really, really withdrawn. Also, novelty is different for him. 

 

The SLDs are easy to diagnose. Stuff like anxiety, depression, ADHD, they'll slap on at the drop of a dime. It's the autism question that is easy to screw up. I'd ask what tools they're running, because it's the one you'll come out really frustrated about if they screw it up.

 

For us, what was *most* conclusive and helpful was having a behaviorist come in and spend hours with him in our home. Then he was really himself and she could just have lots of time. When the neuropsych (first eval for ds) was doing so many things, everything was just cursory, with quickie impressions. Like oh he did this, not autism. And I was like but why this, this, this, and this, and he's like oh well I didn't see that. 

 

And in our case, we really didn't get that our very aggressive speech therapy sessions were functioning like ABA in some ways for him, improving connections. We did a TON of speech therapy before his first psych eval, and the psych blew us off. Then when our funds were depleted and we were doing less, it was more obvious (regression). 

 

Sorry to be so cynical. Hopefully it will go really well with you. Are you driving a long way? Some autism clinics do all one day like that. They'll do multi-factored evals and run SLP, OT, someone who specializes in play, psych, everything. Really, it can take two separate evals like that. I think if you really have the autism question on the table, you want to make sure the person/team is spending a long time on the question. The psych who diagnosed ds with ASD spend 6 hours over multiple sessions *just* on the autism question. The psych who blew us off (removing extremely impolitely word to describe him), did a GARS and moved on. I couldn't even understand the GARS and it was old form, not keyed to DSM5 that we should have been diagnosed under. When the autism specialist used the newer GARS, it was totally obvious and easy to diagnose. And he ran multiple other forms and spent a LOT of time on just the autism question. 

 

When I started, I had an autism specialist psych, then was iffy and went with an SLD specialist neuropsych thinking we could get it all under one roof. That's how we got burnt. It put us behind MONTHS and created tons of strife in our house, because then dh was like see, you're just diagnosis searching, the guy said it wasn't autism and was ADHD. (remove more impolite words about said neuropsych). So that's why, to me, I'm really cautious. You might not get both really examined well in one eval. In theory you should, but I'm just saying good luck on that and be sure. Really ask a ton of questions. 

 

If an SLD gets missed, it's not gonna kill your marriage. If this psych glosses the autism question, that's rough

[TrixieB]

I would be sure they don't keep plowing ahead through the testing if your child doesn't have the stamina for it.  One of my kids had a one-day testing; kid was offered breaks but didn't take them (because really, it needed to be phrased "now we are taking a snack break" for this kid) and the tests were one after the other, non-stop.  Some of the results were questionable and the tester either didn't have the flexibility or take the time to figure out how to deal with the tests that my kid didn't respond to.  So now we have an eval that is not all that useful.

 

My other kid had a fatigue limit of about 90 minutes.  When the neuropsych (NOT the same person who worked with my above kid) saw this, she arranged for us to come back for additional testing sessions weekly until finished.  This kid's evaluation is accurate.  Also, she spotted issues that previous docs hadn't noticed, made appropriate referrals, and now my kid is getting help.  I think I may have her do a new eval for my other kid when we can afford it.

[LifeLovePassion]

Well it will be a long day, but I think it could be just the first day and they will do more if needed. I did have some other people fill out the paperwork, but really they only see the better side of things. I have recorded multiple cell videos of some of the more extreme stuff in hopes of it explaining what I cannot. She has an autism diagnosis through the school system so that will help that they can compare to those tests and reports.

 

What are the better tools for them to use?

[PeterPan]

All the tools are standardized, so it's not like one tool is bad and another is good. It's just that, as you're saying, if the people filling out the forms don't SEE the behaviors, they can't mark them. And sometimes people don't see things because they're in low demand situations or really working around stuff. Like if they're only doing highly preferred activities and making no demands, then of course they don't see the behaviors that you do when you say come over and do this less preferred thing, sigh. 

[popmom]

All the tools are standardized, so it's not like one tool is bad and another is good. It's just that, as you're saying, if the people filling out the forms don't SEE the behaviors, they can't mark them. And sometimes people don't see things because they're in low demand situations or really working around stuff. Like if they're only doing highly preferred activities and making no demands, then of course they don't see the behaviors that you do when you say come over and do this less preferred thing, sigh. 

 

This is definitely one of my concerns as we waiting for our feedback appointment later this week. DD was given the ADOS--which was part of a comprehensive evaluation that included achievement testing, IQ, etc. The ADOS takes less than an hour. 

 

I'm hoping that our psychologist will give just as much importance to the parent interview and all the questionnaires we filled out as to the ADOS.

 

I agree with what others have said. Our psychologist let us know up front that she would watch for signs that dd was needing a break . She also gave me the option of interrupting the testing if I felt like she had had enough. (I was in an observation room) She said she didn't mind ending a session early and rescheduling for another day if dd needed it. Our testing was divided up over two days, and she did fine..

Edited April 3, 2017 by stephensgirls

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Edited August 17, 2017 by Guest

[LifeLovePassion]

All the tools are standardized, so it's not like one tool is bad and another is good. It's just that, as you're saying, if the people filling out the forms don't SEE the behaviors, they can't mark them. And sometimes people don't see things because they're in low demand situations or really working around stuff. Like if they're only doing highly preferred activities and making no demands, then of course they don't see the behaviors that you do when you say come over and do this less preferred thing, sigh.

Yeah I am debating not turning them in at all since I already knew she presented generally fine during times she would be observed by these people. And since they are inexperienced, I think they are looking for positives to be an encouragement. I think her years in the public school system for her iep will be the best help anyways.

[LifeLovePassion]

Our new evaluations will be at an autism center and we will have a team perform the evaluation. In our package of questionnaires we received a couple that were suppose to be filled out by the kids' school teachers. We homeschool so those were sent in blank but I was thinking, since your child has a diagnosis from the school system already, couldn't you have someone fill out the questionnaire that was involved in that evaluation? Is she in school? Are there teachers that can fill out the questionnaire? In our case, my 13 yr old received his own set of questionnaires to fill out, but he is older.

She hasn't been regularly involved in the school in a couple of years since they switched to digital days. I could no longer bring her on a set day (like Wednesday). Now each day is numbered so if there is a day off, the kids don't lose out on a specialist, so now she would go day 3, and the day of the week could rotate. too hard with our other activities we have. Not sure the evaluator would remember her as we are in a huge district, but what we did just update with them was this fall, so it's current.

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[Storygirl]

I'd suggest taking some time to write up a history of what you have seen that has caused you concern. Write about what she was like as a toddler, why she got the autism designation from the school, what you have experienced with her at home through all of her different ages and stages. Be thorough.

 

It will help you prepare yourself for the intake interview, and you can give a copy to the NP, so that they have your written perspective and not just the notes they jot while you are talking during the appointment. It also makes sure that you don't forget to mention something.

 

I wish we had done this for our very first NP appointment. We went to the intake interview and answered the NP's questions but didn't do well enough at explaining all of our concerns.

 

For the evaluations our kids have had since then, I have taken my own written notes to the meeting. And when I say notes, I mean a dozen or more typewritten single-spaced pages. I've learned to be extremely thorough. My kids don't show all of their quirks all of the time, so to make sure the NP knows about them, I've learned to be very specific in the information I offer.

[Storygirl]

Getting outside people to do those evaluations can be hit or miss. Recently we had two of DS's teachers fill out a form for the pediatrician, and when the doctor looked at them, she said they were so different from one another that she might think they were writing about two different children. The teacher who was less perceptive sees DS daily for class at school, so it's not like she doesn't see him often. But she sees him in one kind of structured setting, along with the other 19 kids in his class. His intervention teacher, on the other hand, works very closely with him, one-on-one, in his areas of disability, and her observations were spot on.

 

So it can be iffy.

 

But I'd also be wary of just not completing the forms, because the NP uses those to help figure things out. Back when we were homeschooling and didn't have outside teachers, for one of the appointments DH filled out the "parent" form, and I filled out the "teacher" form. Your NP may or may not accept that as an option.

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Edited August 17, 2017 by Guest

[Pawz4me]

I'd suggest taking some time to write up a history of what you have seen that has caused you concern. Write about what she was like as a toddler, why she got the autism designation from the school, what you have experienced with her at home through all of her different ages and stages. Be thorough.

 

This is what I did before DS's testing. He was 17 before we sought an official diagnosis, so there was a lot to remember.

 

FWIW, the psychologist who did his testing didn't ask for anyone other than the three of us (me, DH and DS) to answer questionnaires. DH and I each had a set of questionnaires that we answered separately so that she had independent input from us. The two of us discussed a few of the questions we weren't clear on, but we didn't discuss our answers. It was interesting in the end to see where our answers had varied and where they'd matched. 

[LifeLovePassion]

I'd suggest taking some time to write up a history of what you have seen that has caused you concern. Write about what she was like as a toddler, why she got the autism designation from the school, what you have experienced with her at home through all of her different ages and stages. Be thorough.

 

It will help you prepare yourself for the intake interview, and you can give a copy to the NP, so that they have your written perspective and not just the notes they jot while you are talking during the appointment. It also makes sure that you don't forget to mention something.

 

I wish we had done this for our very first NP appointment. We went to the intake interview and answered the NP's questions but didn't do well enough at explaining all of our concerns.

 

For the evaluations our kids have had since then, I have taken my own written notes to the meeting. And when I say notes, I mean a dozen or more typewritten single-spaced pages. I've learned to be extremely thorough. My kids don't show all of their quirks all of the time, so to make sure the NP knows about them, I've learned to be very specific in the information I offer.

Thank you for this idea. I have been working on this today. Going through old meeting notes (what I submitted to them) and I am already have quite a bit. I still need to look for some old scans on the computer tomorrow and the IEP and testing reports.

 

I will get my last outside survey back Thursday and I hope she has a bit more insight since she is a more experienced homeschool mom. But I do think people are trying to find the good and be reassuring.

[LifeLovePassion]

My write up is 5 pages long. Crazy! Interesting to look back and see that some things are exactly the same as her early years, and seeing what areas she has made improvements in. 

 

New question. As much as I want to figure out exactly what is going on and if we are dealing with Autism and possibly more, is there any disadvantage to selecting "yes" on the box that says they can share the information with her primary Dr.? While we need this testing, I still want her the least labeled as possible IYKWIM. 

[Storygirl]

It wouldn't bother me for them to share, but we've always shared all reports with our pediatrician and have also shared diagnoses with the schools, during IEP meetings; I'm not worried about labels at all, though and think they are helpful; I know others feel differently.

 

I would think a primary care doctor should know whether a patient has autism.

Edited April 6, 2017 by Storygirl

[PeterPan]

If you want to take the report to your ped, you could do it yourself. If you check the box, the psych will mail it. 

 

The first psych we saw mailed his report, and the ped just sat there astonished, because the report SO did not match the child in front of him. So it's not like the ped will just turn off his brain. 

 

And yes, you'll want the ped to know. You may want to discuss meds at some point. You may need referrals to get insurance coverage for stuff. 

 

I'm sort of a don't need doctors kind of person. We're never sick, don't particularly care to go see them, etc. Really though, the ped has turned out to be our friend on this. This man just bends over backward to help us. If you need help, your want your ped in your camp helping you. And you don't know when you'll need that help, kwim? All it takes is something to change, something to set off the anxiety, something where you're like WOW I NEED HELP, and you'll be wishing you had him in your court.

 

And no, with the change in the laws, autism doesn't matter as a pre-existing condition. It might as well be in there.

Edited April 6, 2017 by OhElizabeth

[LifeLovePassion]

I'm sure our ped will be surprised too. I've brought up concerns, but they were more dismissed. It wasn't until I did the initial preschool evaluation(with the schools) that their reports agreed with me that something was off and it wasn't just me. From there we did a full school evaluation where she qualified for services under the autism heading. It's crazy how getting a diagnosis like this can be reassuring (among many other feelings) that it is not a result of bad parenting.

 

I just sent off about 100 pages to the NP ahead of our Tuesday appointment. (our forms, my typewritten history, previous IEP and testing reports from the school). 

[LifeLovePassion]

New question. Did you/would you bring your child to results meeting? She is 10, close to 11. They said it was up to us at the clinic

[PeterPan]

We did *not* take my dd when she was that age. Some people will do the appt with the parents and then have another, shorter meeting with the psych + parents + child. You're probably going to have significant questions to talk through that you DON'T want to talk through in front of her. 

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[Storygirl]

My children did not go to the follow up meeting. We were able to ask questions and process the results ourselves, without having to also be concerned with how the child was taking it. We then discussed appropriate things with the children afterward, at their level of understanding. Each of them was around age 10 or 11 at the time of their evaluation.

Edited April 14, 2017 by Storygirl

[Pawz4me]

DS was 17 when he was tested. DH and I met with the psychologist to get the results and she left it up to us whether we wanted to set up an appointment for her to explain his results to DS. At his age it certainly made sense to have her explain things to him. I think it would be a harder decision for a younger child.

[Innisfree]

We did not take our younger dd to the discussion meeting. She was 10 at the time.

 

Recently I made a different decision when we got an evaluation for our 14yo dd. She had requested the evaluation herself, and had specific concerns and questions. Although dd was on the young side for attending the discussion, the psychologist agreed to her presence. I think that overall it went well.