Hearing the diagnosis

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I haven't canceled the next appointment, but I am going to explicitly ask what the goal of the appointments are etc. I would also prefer to meet with her and discuss these things separately from my son. He knows she is talking about it him but my son doesn't (fully?) know what is going on or why we are there. He thinks everyone has these types of doctor visits. To be honest large portions of this have never made sense to me even when I thought I was the only one who knew what was going on.

I think that is a good plan. This way if her justification is sound, but she is not a good choice, you can choose to continue on with someone else. If her entire justification sounds like malarkey then you know you can skip it.

We have never been referred to a dev ped in the 8 almost 9 yrs of my son's life. I have always kind of wondered when one needs one and when one does not. I kind of assumed it is to coordinate care (and recommend therapy/therapists) for issues that a regular ped would not have enough information on to give advice for or to suggest options.

I view my son's dev ped as primarily for medication management. She hasn't been at all useful for recommending other therapists (even when I was asking for behavioral help). If he weren't on meds that need periodic monitoring, I wouldn't be going back for more appts.

A friend of mine (in a different state) sees a dev ped that is much more involved in the big picture. When they visit she discusses things like how his behavior has been, whether to try an allergy elimination diet, genetic testing, and other adjunct therapies. Her son is not on medication.

It doesn't sound like the dev ped you are visiting does either of these things for you, so I would also be wondering whether you need to keep going.

Lol! Yep!

There were times during the meetings with SLTs, Ed Psych etc when I would say something that they didn't seem to expect, e.g., they commented on the fact that my son's formal speech included calling me "mother" and I said that I preferred to be called "mother" as "mum" offended my ear, and that my own mother was the same. They all paused, looked at me, looked at each other, then wrote something on their notes before moving on to the next thing.

ASDMom and Zette; The dev pedi is the one who delivered the ADOS and other tests and provided the diagnosis. We've kept going to her because she keeps saying to schedule a follow up. I don't know what need there is to keep going. Indeed, she doesn't offer any strategies or further insights, therapies, or recommendations. Medication has never been offered. We did the genetic testing right away. It didn't provide an answers or offer any useful information, just a bunch of maybes. She asks about milestones when we go. Does he know is letters, can he sight read, can he draw a person, etc. But mostly it's just "so, how are things?" She talks to him for a bit. Asks do you like school etc. Our developmental pediatrician is not coordinating care or directing anything. In fact as I type this it sort of cements the fact that she essentially tossed that role to the public school system immediately. It was her only actionable item when the diagnosis was given. "Contact the school system and see what services you can get." At the diagnosis she did provide a list of items "some parents choose to do" but then said none of it applied to my son and pushed us towards the school. I found some social skills playgroups which she supported but she didn't seem inclined to push us towards anything except the school system. Our state requires preschool services so it makes sense. But I expected more of what you where saying Zette, that she would offer helpful advice but she hasn't. I really wonder what she will say at our next visit when I ask...I suspect it is the monitoring assumption I have always had. But it doesn't seem to be much use to do that. It certainly isn't pleasant.

My wife went to a neurologist in secret. She had a list of 20 symptoms and rad it to him and asked if he thought our son had Asd. He said what do you think. She said he do es an he agreed. It was a horrible cold way to find out and I wish I was there with her. No advice was given to us. If I were a clinician I would say yes, and explain what Asd is, what we need to do in the near future , how to get early intervention, and what to expect. That's really all you can do. Don't be cold be sure and be helpful.

My son had a similar, but not as extreme, experience with the school district speech therapist doing his IEP. He is a super friendly kid and loves new people. The school speech therapist comes and he looks at her and frowns. Next thing you know he is picking up her bag. At first we think it is because he knows when strangers visit him they have toys in their bag, but no, he hands it to her and points to the door. Then she gives him a toy, a new toy! and he just promptly shoves it back in her bag picks up her bag and tries to drag her by the hand out to the door. We stop him and he stands by the door and just cries. We are in shock, he has never ever done this. She seems not to believe us. I have to take him outside to calm him down. After about 5 minutes he is ready to go in and he plays with her toys but really won't interact. Another 10 minutes go by and the psychologist who is late arrives. My normal super happy guy pops up with a huge smile, opens the door and says hi. He anxiously waits for her to give him a toy and happily participates with her. He even says a few words for her. When the speech therapist tried later I think he said "dog" and "cat" and "no" to her. She seemed hurt, but at least believe us when we said he wasn't terrified of strangers in the IEP report.

He also had another situation when being evaluated for speech and OT. They were back to back(bad idea) and OT was first(worse idea). OT is fun, lots of toys and fun games 30 minutes and then in the same room comes Speech. The speech lady only has a flip chart w pictures and wanted him to talk which he was not doing at the time. He just refused to say anything even the few thing he said on command. He wasn't bad or upset, just not interested. He didn't need OT but they told us to wait 6 months for another speech eval because he was non verbal and not receptive. Next apt was the family psych guy, our second visit. So he reads the report and starts in on how my son might never speak and wasn't listening when I tried to explain he was just bored and tired of being stuck in that same exam room for 1hr. I never went back to him again.

6 months later my guy is in speech and somehow taught himself to read and now not quite two months later is reading at about a 1st grade level. He has pragmatic speech issues, he couldn't tell you for the life of him what happened that morning and has pronunciation issues, but he was speaking before he could walk.