looking for opinions...

iVillage Member
Registered: 10-23-2005
looking for opinions...
5
Sat, 02-17-2007 - 6:38pm

Hello,

Im just introducing my daughter and just looking for opinions... we still really don't have an official diagnosis and i just wnated to talk about her symptoms. well she initially had Hypotonia and still doesn't walk but we are certain that she will we just aren't sure when.. she walks on her knees right now...runs (reallyf ast!) kicks a ball..everything on her knees but she does have all the necessary reflexes and such to walk so we're just wiating. she has been in therapy (PT, OT, and ST) for a year now and her expressive skills are norm for her age but she doesn't really uinderstand what she says she does Echolalia and Echopraxia and her receptive skills are and always have been about 4-6 months behind. at one point she could answer questions like what is your name and how old are you but now she won't if i ask she will either repeat the question or else change the subject like point out her eyes or feet. the neuro is a bit stumped he said what she has fits into a developmental disorder. but...so far thats all i have.. she does play pretend but mostly i notice she takes little piece toys out of whatever container and hand them to me or pile them wherever and she loves to color. she is friendly to people and affectionate to me. but if people talk to her in public she will just stare. she goes to daycare for about 6 months now and she still does not interact with the children 9 times out of 10 when i pick her up she is by herself. by the way she is 26 months old now. she turned two in december.

iVillage Member
Registered: 05-16-2006
Sat, 02-17-2007 - 8:55pm

Welcome,
Well you are on the right track. On paper from what I read she's classic PDD. She's got a little of this, little of that ect.
My son didn'tg get his label till 2 yr 9 mons. It'll be one year of actual service counting EI March.
Time sure does fly. LOL
Getting your daughter help is the most important thing. Not having a DX is withholding extra/possibly free services she is entitled to.
If you feel that the person you have seen for your daughter is hesitating, get a 2nd opinion.
This is the most difficult time. Getting the answers and just trying to comprehend all the news that falls into place afterwards.
My son is 3 1/2 now. He has his good and bad days. He was ALWAYS behind on speech. We NEVER thought Autism. PDD is so vague just because I've seen other children DX'd w/PDD who are alot worse than my son.
Depends on the therepist and doctors. He goes to a Special Ed preschool 3x per week and gets ST and OT there. He also recieves ST and OT 2x outpatient and goes to a social skills group 1 day a week.
We are busy busy busy. My son also was DX's with Dispraxia (sp?). His fine motor skills are behind but slowly getting there.
I see alot of progress. I have days I cry my eyes out. I give myself a pity party on occasion but I realize this is what life dealt me. If I don't help this child, Lord knows what will happen later.

Good Luck
((hugs))
Nora

iVillage Member
Registered: 10-23-2005
Sun, 02-18-2007 - 7:44am
thanks yeah im in canada so there isn't really a whole lot more that she would receive like the dev. ped said last summer even if there was a diagnosis the treatment would be the same. although i think she would really benefit from having a worker for her at her daycare. and...for that i would need a diagnosis. the neurologist actually is finally doing something for me apparently everyone else has suspected the dev. disorder but he has been the only one who has told me anything! he just wasn't too sure what to do for her but he was going to search around to find someone who could maybe find a diagnosis for me so im just waiting to hear from him im gonna give him another week before i start calling down there :) he did say also that he def. doesnt' think she has autism also because she communicates so well even tho she doesn't really understand a whole lot her long term memory is really good she memorizes words she repeats and uses them again in the right context... anywyas hes stumped but...at least he will admit most dr's i have seen wouldn't dare lol so im really glad hes thinking of finding someone else to evaluate her. it has been a very long time it took about 8 months of fighting with drs just to get her into therapy! the only thing he really said was to just correct her pronouns with the echolalia. its frustrating too because she just doesn't seem to understand when shes doing something she isn't supposed to. if i take a toy away from her she doesn't care and same thing with time-outs she could care less and if i threatena time out shes just all "OK" lol any suggestions? I think too the neurol suspected aspergers he asked if she does anything super well or have that one thing she just loves to do that nobody else can kind of thing and i said no not really and he said not yet anyways. sorry my post is just all over the place lol

iVillage Member
Registered: 07-12-2005
Sun, 02-18-2007 - 4:01pm

Bella Heather,

First of all, welcome to the board! Pull up a comphy chair, drink of choice, and take a cyber cookie.

I have to agree that what you've described sounds like PDD. It could be Asperger's, but without a full eval I couldn't tell for sure. But do hang around and read, ask questions, etc.

On the note of her walking on her knees, I have to ask, does she have full extention in her legs? I ask because I have a 4yo DD with Policy's Syndrome, which is an orthopedic disability and she walks, runs, dances on her knees, and the primary characteristic is a localized limitted extention of one or both knees. For her it's both, though one has more extention than the other.

She's very active and enjoys sports as much as she can do them. Much more than her older sisters with ASDs. She's in a wheelchair when she goes outside because she'd tear up her knees if we let her run around on them on concrete or rugged terrain. She doesn't have any feeling in the joint of her knees (which is not typical of PS, btw), but everything else, above and bellow the knees are very sensitive and dexterous. She refuses to wear kee pads or anything else to protect her knees that have to actually attach to them. I sew thick pads on the knees of her pants, and she seems to like that okay.

Is your daughter physically active despite the knee-walking? That's something I'd be interested in hearing about, no matter the reason for it.

As for the rest, like I said, stick around, ask questions, etc. Even if she doesn't end up being on the speactrum we won't mind helping you get to bottom of what's going on. Nothing worse than knowing SOMETHING'S wrong, but not knowing WHAT, or what you can do about it.

~Candes

APOV on Autism

iVillage Member
Registered: 03-20-2003
Sun, 02-18-2007 - 10:56pm

Welcome to the board.


I see you've gotten some great advice.

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iVillage Member
Registered: 10-23-2005
Mon, 02-19-2007 - 6:52am
well with the kneewalking shes about as physically active as she can be i guess. before winter she really didn't do a whole lot outside hopefully in the spring...
she does quite a bit with her knees she can go really fast! our aunt was over saturday morning and she couldn't believe how fast annabelle was on her knees...and that speed was nowhere near fast for her! she can even kicka ball with her knees. but she does has full extention of her legs she can cruise around furniture and walk hand-holding. but as soon as she feels you loosening your grip on her hand she drops to her knees she has a toy push walker and she will not push it around walking either. its really strange! she basically has everything she needs to walk the only thing is her left ankle falls in so maybe that is what her problem is i dont know. the PT seems to think she should still be able to walk... she has supports now for her feet so hopefully that will fix it and help a little bit. she has only had them about a week now. they did give her kneepads she gets mad when they go on but then she forgets about them but they are cutting into the backs of her legs so thts no good so im not really sure what they will do this week fo rher..maybe if they are a bit bigger it will help that i dont know. her knees are really scuffed upa nd red & swollen at night now. the neuro just thinks maybe she is just afraid of falling and was going to look for something that shed feel secure using for walking..so hopefully! she was late with all her gross motor stuff tho she crawled at 12 month and sat up at 13 months and pulled up to stand at 17. for the echolalia the neuro just said to just keep correcting her pronouns which ive been doing so we'll see. im just still waiting to hear from the neurologist... :S