How many second opinions? Or when to stop assessing preschooler if nothing seems to fit?

[Anonymous]

I've not posted in this forum but have learned a lot (especially provider referrals) from reading the archives, so thanks for being such a thoughtful resource.

DD is almost 4 and we've been dealing with behavioral issues since April (hitting us, teachers, friends; yelling; tantrums; etc). Family therapist referred us to sensory processing eval, which found minor issues and recommended weekly OT. After 5 OT sessions, the therapist hasn't been able to see a sensory situation trigger behavior, and thinks it is behavioral/temperment/strong will.

Switched in October from a larger to smaller daycare with staff who are more experienced both in general and with special needs, which is helping. Simultaneously, we did ChildFind and were only referred to have a more extensive speech eval, for not answering questions but saying "I don't know" to simple things she knows (concepts and verbal test result was above average) and extensive verbalization of fantasies. Referred to ChildLink, which is working in the classroom. Continuing to work with psychologist to implement parenting strategies and reading tons of recommended books (including Dan Shapiro's class materials). Being consistent at home as much as possible, including positive reinforcement.

Both ChildLink and new teacher think some combo of ADHD/autism spectrum/anxiety are the cause. We got on lists for developmental pediatricians/neuropsych eval. Had the KKI intake meeting and screening today. Screener was a nurse practitioner, who said: definitely no autism or ADHD, probably some anxiety. Will get full report in 30 days.

Teacher and daycare director think KKI is wrong. DD was also screened by NIH as part of the autism natural history study at 18mo as a healthy volunteer and had no developmental delays. We're contacting them to have her re-screened, as a second opinion. Also planning to work with another therapist who can provide social skills/group therapy in the new year.

My questions are:
Given that some of these conditions can look similar in preschoolers and also co-exist, how many opinions do you need to get if nothing seems definitive?
At this point, do we just need to wait for her to get older so that the issues lend themselves to diagnosis (even though early intervention is best)?
When you can't get a diagnosis, best to just keep working on the symptoms?
How much trust should I put in a 1.5 hour screening by KKI vs. the observations of DD's daily teachers? Should I push for KKI to do more?

Thanks in advance!

[Anonymous]

I have no answers for you but I could have written your post. My son is 3yrs and 8 months. I know longer know what is truly an issue and what is just slightly delayed developmentally. We also got the no spectrum, no aspergers, no autism answer from our dev ped. However we did not get the no ADHD answer and I was told we would have to wait until he was 6 or 7 to rule that out.

I'm curious to read others opinions.

Did anything come out of your more extensive speech eval?

[Anonymous]

OP here. The conclusion of the speech eval was "atypical patterns of delayed responses and excessive verbalizations on 36% of responses. If a child shows interfering behaviors on 20% or more of the test items, additional observation is recommended to determine the source of the behaviors that have been noted. These behaviors can stem from a range of sources and may represent other issues."

So I feel like we are doing our due dilligence to get the extra observation and try to pinpoint the source, but coming up empty handed.

The psychologist we're working with even called the speech therapist to see what the above section meant, because she'd not seen it in an eval report before. Speech therapist said that's what it says in the county (we're in MoCo) "manual" for what to put when there isn't anything conclusive. The psychologist interpreted it as that DD prefers to talk about/try to bring playmates/adults into her fantasy world rather than respond to practical questions or requests to follow directions.

We haven't had our follow-up IEP meeting yet, and I was hoping that if I had a medical diagnosis that shed some light on why we might need some help with specific classroom skills so we could at least ask for a 504.

[Anonymous]

OP--I feel your pain. These darn preschoolers. So damn finicky! The best advice I've gotten so far is from a friend who is also a SLP. She told me that we expect so much from our kids these days. And any kid who is not able to keep up at 2,3,or 4 is looked at to see if they need early intervention. She mentioned that early intervention is a great thing and very important, but that I should keep in mind that some kids just develop slower than others. That there is nothing wrong with them that time won't fix.

Great advice--but it didn't stop me from getting involved with a dev ped, getting a full SLP eval, going through Child Find, changing preschools, and in general driving myself crazy. Like you, I'm coming up empty handed. The more I get my son evaluated, the more the months go by, and the more he develops. My friend may just have a point when it comes to my child.

Does your gut tell you that anything is going to come out of your IEP meeting?

[Anonymous]

OP to 16:21:

Our gut (and those of many of the therapists who have worked with DD and seen the ChildFind/speech reports) is that nothing will come out of the IEP meeting. If she needs something, we'd either need to really prove what we need from the county or pay for it privately (which we're ok with doing if we can figure out what she needs).

But you might be right -- and we're starting to think -- that maybe it is just a matter of time. She isn't really delayed in anything, but there's a sense that she's "different" because she's so unusual in how she imagines things and plays. It is more a matter of figuring out the cause of sudden, intense negative behaviors. And if there isn't a cause, training her to manage them appropriately. While at the same time, we want to preserve the positive parts of how creative she is.

[Anonymous]

I can only talk about Asperger's but I think to rule it out, you really need input from teachers and/or a developmental pediatrician who can observe a child with same age peers. I have a kid with AS who passed all screenings for autism with flying colors and our pediatrician and we never suspected he had any issues at all. He is great with adults: great eye contact, very verbal, etc. It wasn't until he in seen in a classroom with kids his age that any deficits are apparent and I know for a fact that if our developmental pediatrician had not seen him at school and spoken to his teachers, he would never have been diagnosed and given the help and supports he needs.

In your case, I would put more weight on the teachers who work with your child every day than an adult who only interacted with your child for 1.5 hrs.

[Anonymous]

Anonymous wrote:OP to 16:21:

Our gut (and those of many of the therapists who have worked with DD and seen the ChildFind/speech reports) is that nothing will come out of the IEP meeting. If she needs something, we'd either need to really prove what we need from the county or pay for it privately (which we're ok with doing if we can figure out what she needs).

But you might be right -- and we're starting to think -- that maybe it is just a matter of time. She isn't really delayed in anything, but there's a sense that she's "different" because she's so unusual in how she imagines things and plays. It is more a matter of figuring out the cause of sudden, intense negative behaviors. And if there isn't a cause, training her to manage them appropriately. While at the same time, we want to preserve the positive parts of how creative she is.

My son has the intense negative behaviors as well. I haven't figured out how to help him manage them yet. Each time it happens, it brings a new set of challenges. If I knew what was triggering the behavior, it would be so much easier to "fix". What outlets have you given your daughter to express herself?

[Anonymous]

Anonymous wrote:I can only talk about Asperger's but I think to rule it out, you really need input from teachers and/or a developmental pediatrician who can observe a child with same age peers. I have a kid with AS who passed all screenings for autism with flying colors and our pediatrician and we never suspected he had any issues at all. He is great with adults: great eye contact, very verbal, etc. It wasn't until he in seen in a classroom with kids his age that any deficits are apparent and I know for a fact that if our developmental pediatrician had not seen him at school and spoken to his teachers, he would never have been diagnosed and given the help and supports he needs.

In your case, I would put more weight on the teachers who work with your child every day than an adult who only interacted with your child for 1.5 hrs.

16:21 again---PP here has a good point. You mentioned your DD is almost 4. Have you called Dan Shapiro's office to see if he is accepting new patients now? Since part of his evaluation is a classroom observation, it might be beneficial for you.

[Anonymous]

OP, this sounds very similar to my child. In our case, it became very clear after we pulled him from the DC Charter we were at that the issue all along was the school. He was not ready for that structured of an environment and their methods were totally wrong for our son.

We have since moved entirely out of the area where DS is at an all day daycare/preschool whose teaching philosophy is developmentally appropriate for our son. They use positive reinforcement versus the very, very negative system the charter had been using. His new teacher says he is one of her best kids, is very smart, is quick to apologize for bad behavior and is quite reasonable. She thinks our over-anxious check-ins about how he is doing are kind of silly, I think, and when we tell her about our experiences in DC she is shocked.

So, don't assume that KKI is wrong. Our kid definitely had anxiety because the school we had him at was demanding things of him that he was not prepared to give. It shut him down completely to the point where every morning was 20 minutes of hysterics about going to school. When I think about what we put him through (because we are first time parents and didn't know) I feel sick. Do NOT let these teachers/daycare directors - who ostensibly do not have actual degrees in special ed or developmental pediatrics - insist on things that you do not feel are right.

In our case, it's pretty clear now that the school was just utterly incompetent when it came to adapting curriculum to each child's developmental needs, and that his teacher needed to insist something was wrong with him because she was utterly clueless how to deal with any child that wasn't 100% with her program. My son was just one of several boys that she did not know how to handle and who had terrible experiences in her classroom.

[Anonymous]

Anonymous wrote:OP here. The conclusion of the speech eval was "atypical patterns of delayed responses and excessive verbalizations on 36% of responses. If a child shows interfering behaviors on 20% or more of the test items, additional observation is recommended to determine the source of the behaviors that have been noted. These behaviors can stem from a range of sources and may represent other issues."

So I feel like we are doing our due dilligence to get the extra observation and try to pinpoint the source, but coming up empty handed.

The psychologist we're working with even called the speech therapist to see what the above section meant, because she'd not seen it in an eval report before. Speech therapist said that's what it says in the county (we're in MoCo) "manual" for what to put when there isn't anything conclusive. The psychologist interpreted it as that DD prefers to talk about/try to bring playmates/adults into her fantasy world rather than respond to practical questions or requests to follow directions.

We haven't had our follow-up IEP meeting yet, and I was hoping that if I had a medical diagnosis that shed some light on why we might need some help with specific classroom skills so we could at least ask for a 504.

Oh bou, I remember this gobbledy-gook too. When we finally got into a developmental ped at Georgetown she basically said those formal evaluations they give 3-4 year olds are mostly bunk because if they insist on following them strictly from start to finish the process requires these very young children to sustain attention for far longer than they are developmentally able. She is one that many on this forum pooh-pooh but was the ONLY one that made a lick of sense to me and DH. She basically said anxiety and he needs a new school that works better for him. We've done both and yeah, she was right!

[Anonymous]

OP,

First, a big hug. This is an exhausting process and good for you for keeping on top of it all.

Second, in regards to the teacher and preschool director thinking KKI was wrong--it's possible, however a lot of SNs look similar to autism in how they present themselves. (A lot of people think autism first b/c awareness is so much higher.) How many opinions do you need depends on if the feedback your getting is helpful.

If KK, seems to think it points to anxiety, then hopefully you could also see a child psychiatrist. (Re-screening through NIH isn't a bad idea.) Sometimes a diagnosis does take a while to unfold, definitely keep working the symptoms.

[Anonymous]

I don't know if this is relevant, but I have an ASD child, and one of the things you hear so much in ASD-world is how under- or un-diagnosed girls are. You only have to go visit a SN school to see how many boys there are and how few girls in the early years. I think this is true of ADHD too - the boys get diagnosed bc they are a problem in the classroom in preschool, and the girls float along till much later.

Girls tend to be diagnosed so much later because they present "atypically." Is it really atypical or do girls' needs just look different and we're not used to it? I don't know. None of this may be relevant to your daughter. But it might be something to keep in mind.

[Anonymous]

OP here again. Thanks for all the support!

To 16: 37: DD loves movement, so she's taking ballet and karate and we try to take her to outside activities as much as we can. We're considering working with a therapist who is a psychologist and a dance therapist combined to help turn this strength into even more of an outlet for expression.

To 16:40: Yes, I contacted Dan Shapiro, and his voice mail says his office is currently closed to all[u] new patients. We only have until March for DD to turn 4, so I'm not holding out too much hope. We might take the winter class though to at least get to meet him and other parents. We have had some classroom observations -- we had also hired an educational consultant/psychologist to observe at the old school. She didn't notice any of the ADHD/autism-like behaviors because DD's former situation was so egregious.

To 16:41: We felt exactly the same way at the former daycare, down to the 20 minutes of hysterics at drop off because of hating the school environment! We felt the same way about "how could we not have seen this?" but we had to remember we're first-time parents and we aren't trained in this, so we were really thankful to have our eyes open to what is actually developmentally appropriate. Our current daycare teacher and director have many more years of experience than at the former school, so while I do trust their opinions more than DD's former teachers, I also recognize that they don't have the qualifications to diagnose. Maybe what we're seeing now is residual trauma from however many months she really hated the former daycare? Did your son's issues completely resolve in the new environment? After how long? It has been about 2.5 months for us in the new school.

To 17:15: We definitely will keep working through symptoms. I guess the part I struggle with is if I'm trying to find something that might not be there. Because of course I still hope that this is just a phase that she'll grow out of and there isn't really something wrong, but I don't want to just give up because I'm hearing the lack of diagnosis that makes me feel better. The feedback I get is somewhat helpful, but usually the therapists all start with the same thing. And you're right, it is SO EXHAUSTING to keep filling out forms over and over and keep explaining all the interventions we're doing/have tried. Is there an area psychiatrist who specializes in preschoolers who is particularly good with the hard-to-pin-down cases?

To 17:18: Yes, I'd read about how girls are under-diagnosed for both ADHD and ASD because they present differently, and often later. DD is definitely sometimes a problem in the classroom and at home, which is part of why we've been so motivated to find an answer.

Update: The invoice DH brought home tonight says ICD9 codes of #1 "CNS (Minor Neuromotor Abnormality)" and #2 "adjustment disorder." Under recommendations it says "Follow up, same clinic" and checked the box "other" and she wrote "pm" in the line next to it and then "as needed" under length of appointment.

What does that mean? Anyone familiar with KKI know what follow up we should request? There's also a note to refer to social work/psychiatrist for further evaluation and recommendations. I thought that was what we were going to KKI to get? Should I contact Georgetown or Children's next? I also reached out to Stixrud but they are out of pocket so I'd rather stick first to practices that accept insurance if at all possible.

[Anonymous]

Shapiro takes new patients who are 4 yrs old and younger so you have a lot of time to get him. GL!

[Anonymous]

Anonymous wrote:Shapiro takes new patients who are 4 yrs old and younger so you have a lot of time to get him. GL!

No, she doesn't. Her DD will be four in March. That's in three months. Having BTDT, she will never get in with Shapiro. Not trying to be discouraging, it's just a fact.