intensive level evaluation

iVillage Member
Registered: 01-13-2008
intensive level evaluation
5
Thu, 03-06-2008 - 10:25pm

well they truelly dont think she is on the spectrum one said could have been pdd-nos , but they said after an hr they really saw how socialable she can be. and i said yes once she grows comfotable in her surroundings she does well with most adults, but not children.. but as of now all they saw fit was to diagnose her with SPD, speech delay (said shes a yr behind), and Anxiety Disorder w/OCD tendencies (said she was acutally one of the most anxious kids theyve seen)...


and i guess i should be happy that she isnt on the spectrum although i wouldnt have felt any different ya know. but something in my heart is telling me this still isnt right..


if i may give u a few scenerios and yall tell me if u think i should get further opinions, maybe seek the help of a neurologist ???


rylee doesnt communicate like your typical toddler, shes great at labeling, or saying one to two words now to help us understand her wants and needs. but one thing that she does that strikes me as ODD is shell ask "good night sleep?" at all times of the day & i just say yes baby u did have a good night sleep. i noted today in a 2 hr time frame she had asked me that 5 times, and each time its as if shes never asked it. like her brain is just misfiring or something ??!!! or like just yesterday she wakes up from nap, and i enter her rm saying hi miss rylee, and i pause for her to say something, and instead of saying what a typical toddler would (hi mommy), she rubs her bed and says "clean sheet, ooh soft"...


i dont want to sit here and throw myself a pitty party because i know how much worse things could be, but i just feel lost and u ladies are the only ones who understand any of this stuff.


thanks for listening!


AMY

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iVillage Member
Registered: 04-28-2007
Thu, 03-06-2008 - 10:58pm

Amy, here's the thing, Rylee is still very young. At age 30 months Cian's only dx was speech delay through the kennedy Krieger Institute and Early intervention. Now at age 4.5 he is a very gentle, but definitely diagnosed Aspie.

At age 2.5 Liam's only dx was "he's very busy" and this from supposed professionals. Now his dx include HFA/ADHD/Mood disorder-nos.

I say this to let you know when they are this young it is SO HARD to get a true and definitive Autism dx, especially if they aren't eating drywall, and spinning for hours and saying "now on DVD....." 27 times in a row.

My gut says follow your gut. Take what they are offering, but push for more. Does this eval mean she'll get more services?

Dee

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Registered: 03-26-2003
Thu, 03-06-2008 - 11:01pm

Well it is very hard to diagnose more verbal children with autism spectrum disorder however, I will say it is my experience with children who have that combination of symptoms you mentioned they do end up on the spectrum. OCD, anxiety, sensory processing disorder, speech/language delay or disorder. Yeah that kind of speaks volumes of PDD.

BTW my oldest was a lot like that. The first neurologist diagnosed her with dyspraxia (motor skills thing simlar to the SPD which wasn't diagnosed as often then), language disorder (also a year delayed with weird language) and ADD. She also had anxiety and weird rituals but he didn't make diagnosis about those. He said she wasn't PDD because she looked at him and smiled when he entered the room. Cait did better with adults as well and she was a rather smiley kid. She didn't interact with him, he made a noise entering the room and she looked up. She happened to be smiling at the time.

We weren't satisfied and we took her for a second oppinion. She went to a neuro-psyche for testing who did diagnose her with PDD-NOS at first. The reason it was PDD and not autism was because of how social she was with adults but by then she had been in special ed preschool for a year and there was tons of documentation of how she wasn't social with peers, language issues, etc.

Currently she is nearly 14 and her diagnosis was changed to Asperger Syndrome by one doc and HFA by another. She is doing very well in the grand scheme of all things autism but she is still definitely on the spectrum.

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Registered: 11-28-2006
Thu, 03-06-2008 - 11:46pm

I agree, follow your gut!


I think I posted on another thread what hell I went thru getting Chris Dx-d and he was older!


Just stick around, wait for a bit and try to get an eval from another doc if you can.


I thought Stanford was the bomb, until they told me some weird things.

iVillage Member
Registered: 02-28-2008
Thu, 03-06-2008 - 11:55pm

Hugs to you.

Rylee is very young still. I didn't take Graham for an ASD eval until he was 7 because I had heard that they couldn't tell for sure until then and even then they gave him NVLD with Asperger's characteristics because he was "so young". No one would have given him a forsure spectrum label at 3. He wasn't lining up toys or spinning or hand flapping.

Take the labels. Get the services. Do what you can and what you feel is right for your DD and then wait and see how she develops. If she's not on the spectrum you will have done right by her and if she is on the spectrum you will have done right by her. I can tell how much you love her and that's what she needs most of all. A label isn't going to change that.

I know not knowing is hard, but even when you do know that they are on the spectrum, it's still hard because you don't know what the future is going to be like for them. Will Graham ever find love? will he be able to hold a job? will he even be able to handle middle school?

You've done so much for her already. You've been proactive and gotten her evaluated and gotten yourself educated and found this board. And that's a lot.

You're a great mom.

Drea

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Registered: 01-25-2007
Fri, 03-07-2008 - 3:46am
I really do believe that Moms know best. I've spent 7 years trying to get medical and school personnel to see my son's problems before he was diagnosed. It's frustrating, maddening and flat out a waste of precious time, but there you have it. Take whatever services they offer you and continue to educate yourself. I was doing things like role playing and social stories with him long before the therapist thought to suggest them. You can do it too. Good luck.