My dd did great at the pediatrician's yesterday! She participated in the vision test, stood on the scale, let the doctor do EVERTYHING she wanted including taking off her socks !!!(which if you remember about my dd's latest fear of the cuts on her toes that is huge in of itself, let alone at the doctor's office. The cuts are healed, btw, but dd still won't look at her feet or go barefoot). She tried to do the hearing test but got too scared and wouldn't let them take blood pressure. That's it! She didn't even cry! I was so incredibly impressed. (She used to cry in the parking lot and waiting room and kick and scream at the dr). She was truly amazing
I talked to the pediatrician about the severe receptive/expressive language disorder dx and speech therapy. I told her about my main concerns - which were mostly about language, but also the unusal fears, the great lengths I have to go to to get her to overcome them (gradual exposure), sensory issues and a few other points of concern. The doctor said dd's fears fell into the "standard deviation" for "weirdness" among kids. We talked about how she is with other kids (always been social, interested in other kids, cousins, etc.) and I also had the preschool director observe her in the classroom and reported what she said. The ped. said it didn't sound like PDD. She actually said it was NOT PDD. But then she started talking about the spectrum and getting her to a ped. neurologist and get her cognitive abilities checked out etc. etc. I was so confused, I asked her to clarify. I thought PDD was an umbrella term for 5 or so different varieties which include autism, pdd-nos, aspergers, rhett's, and one more I can't remember right now. So when she said it's not PDD I thought she meant she's not on the spectrum. But I guess what she meant was it's not AUTISM. It gets so confusing!! Even the doctors don't know the terms! She asked dd how old she was. Of COURSE, DD didn't answer because she has a language disorder and CAN'T (although dd was very social with dr, saying hi and calling dr. by name and otherwise talking with her). We know she's supposed to be able to say her name and age - but she has a language disorder. ANSWERING (and asking) QUESTIONS is a goal on her IEP for crying out loud!!! So then dr. starts talking about how else she may be on the spectrum because she should be able to answer that!! She wrote on my preschool med form that dd was mildly dev. delayed - uh, wait a minute, WHY? Because she can't answer a question when she has a language disorder??? All the other age-appropriate questions she asked - about getting dressed herself, can she draw a circle, etc. dd is right on target. I simply don't understand???? It was the same with the preschool dir. She said dd didn't "interact" with others kids because she didn't use "spontaneous" speech (which is NOT true, she does just not at a 3 year old level) because she doesn't say something like "come play with the blocks with me." BECAUSE SHE CAN'T!!! But the dir. then says dd sits at circle time, sings the songs, listens to the stories, does all the activities, sits next to the other kids at activity time, runs around with them and generally plays near them. Sounds pretty good to me. She kept talking about the lack of speech and I kept saying I KNOW I KNOW she ranks in 2 percentile in total language- she is going to LACK SPEECH!!!! I'm just confused on why the speech DISORDER isn't being taken into account and being thrown around as THE BIG ISSUE when we already KNOW she has a language disorder. I'm soooo confused. I talked to her speech therapist about it today and she explained AGAIN (because I KEEP asking) that language disorder is a criteria for PDD but that she sees lots of kids with language disorder that don't fall on the spectrum. If the doctor said dd's unusual fears are within the realm of "normal" range, she's been dxed with a severe language disorder (that CAN stand alone), she interacts (to her capacity given a language disorder) with peers and there are no motor issues/behaviors, then why does the ped. still think she's on the spectrum and questioning her "IQ and mental capacity"? I'm all for going to the ped. neurologist and glad to get the referral because I want this whole thing put to rest. Rule it out or rule it in and let's get on with it. Plus she DOES have a neurological disorder with the language disorder so getting her hooked up with a ped. neurologist makes sense. I want to make sure she's getting all the help she needs and no stone is left unturned. I am NOT worried about her "cognitive abilities". I think if they want to test her intelligence, be my guest. They will be surprised (she surprises her ST EVERY session so far!!) . I don't know. Maybe I'm just in denial. I don't want there to be anything else going on. I don't even want there to be a language disorder. So maybe I'll be the one surprised??? Am I making distinctions (language disorder vs. PDD) that aren't there? Am I NOT understanding something fundamental here? Am I being blind somehow, clinging to the hope of language disorder only? I'm very confused. I'm going ahead with the evaluation so even if in my head I'm angry and confused and frustrated, I'm NOT hindering or against getting any evaluations and further help for my dd.
I'm so with you on the confusion thing there sally. Read my Ds did good w/ ST post lol. I'm so far from understand my own ds, that I can't begin to give you expert advice on yours. But I will say this, you're doing a GREAT job! You are questioning everyone (who cares if they get sick of explaining it, you need answers and that their job!), trying everything, working w/ her, and being extremely observant to make sure you don't miss anything of dd's behavior. I don't know how those things could be considered "normal weird behaviors" to me. I mean I'm not a dr or anything. Honestly things you wrote about dd made me think it was odd. My nt dd who just turned 4 has cried and freaked out to get a cut of course. And she would take coaxing to get me to look at it. But she never freaked out over band aids. I mean maybe it could all be related to her speech impairment where she just can't tell you what the real problem or fear is and so she just freaks out. I dont know. I would just keep doing what you're doing which is trying it all and looking for the RIGHT answers.
Amber
OH and when you find those "Right" answers, let me know what they are will ya lol. Cuz I'm lost too!
Hey Sally WOW! What a mess huh? You go and expect to find out one way or another and it leaves you more confused than you were before. Im even confused!
Yes kids can have language delays similar to kids who fall on the spectrum without actually meeting enough criteria to be on the spectrum.
She might have OCD behaviors with the cuts and bandaids. add or adhd behaviors with attention, or anything else along with the language disorder and just not meet the criteria for any of the 5 different dx's that fall under the PDD umbrella. www.childbrain.com has all the criteria for a dx and how they are dx's and explanations of each dx and so on.
Tourettes often displays like ASD's as well and the two are somtimes confused because tics can be hard to distinguish from stims or repetitive behaviors. You may want to look into it as well.
I would call and ask the dr to clarify what they mean and the way you understood everthing They need to explain so we understand not to leave us with more unanswered questions. Now some drs do refer to PDD-NOS as PDD. WHY they cant make it easy to understand is beyond me!
Hi Sally,....whew, I'm w/ you very confusing!!!
Well, to me she sounded like she did great...Its hard for them to assess our children in a short visit and many times when Nicholas didn't respond to or do what he was asked by a doctor I would tense up because I KNEW he could do it and did for me when I asked...he says hi, he does so much appropriate stuff, drew a circle for the ped neuro, pointed to the horse...almost everything...but still pdd/nos and I do know there are issues, but as long as he gets his services and gets all the therapy he can handle to help him, they can call him what they want LOL...I'm not laughing at you at all...I'm just laughing because as much as I think I know, I still feel completely clueless at times...I mean I know the textbook term...I know the symptoms..but all our kids are so different...its really difficult...and like Michelle said, if the dr's cant get together on terminology, how the heck are we suppose to understand! ; P
I want to tell you this...your dd sounds like she is doing super and I'm so happy for you both...I hope you can make some sense out of everything....and when you do...PLEASE LET ME KNOW LOL... big hug to you and dd!
Ali
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