Hi, New here

iVillage Member
Registered: 02-24-2005
Hi, New here
20
Tue, 06-26-2007 - 12:04pm

Hi,

My son (now 20 months) was unofficially diagnosed with PDD-NOS a month ago. I say unofficially because his dev-pedi said that he is really to young to diagnose him but if he were then that would be it at this point and time. Victor does not talk and only understands me sometimes (sometime he will come when I say come, sometimes he will look at me when I call his name but not always). He does not understand any complex or 2 step directions. He is very inconsistent. He has some sensory issues as well - he hand flaps when he is excited, and mouths a lot of things. He also chews on his books.

He can be very social and happy at times and other times very clingy to me or his dad and not want anything to do with anyone else. Again its inconsistent. Sometimes he loves to play with other kids, sometimes no...

He is smart and seems to figure out his toys and electronics pretty quickly. He has known how to use the TV and remote for months. He also likes to explore and will walk through new houses and look and touch things (even when he is crabby). He doesn't seem to do anything dangerous though which is good.

He doesn't have any motor problems even if he was a "late" walker (15 months). He walks fine, walks backwards, runs, will climb on top of things... and also he has a good pincer grasp and can pick up the tiniest objects. He doesn't "draw" but he will pick up a crayon and make some lines on the paper before he decides it is more fun to put all the crayons on the floor and then pick them up again and do that all over.

He doesn't obsess over anything but he will sometimes do things a few times but he is easily redirected.

He has very good eye contact which makes the doctors and therapists shy away from "Autism" but he is somewhere on the spectrum.

He doesn't waive hi or bye usually but sometimes will. Sometimes it is spontanious and sometimes its when we ask. He's only clapped his own hands once about a month ago which we thought was a breakthrough but we haven't been able to get him to do it again since then.

We have been trying ASL with him but he will take our hands to do the signs (like More, and all done). He will also take our hands and clap them.

Sorry this is so long - I am just looking for others that can relate to the same characteristics.

I don't know how to help him. The dev pedi said he is at a crucial point where it can either get better and eventually he will lose the diagnosis or it will get worse. I am a nervous wreck because of this. He is currently getting ST (but I haven't seen any improvements yet - its been about 3 months). He will be starting SpecialEd and OT (for Sensory) either this week or next. I am so worried that I am losing precious time that I could be doing more. I don't know what to do. I've always read to him and he loves books. I sing to him and do itsy bitsy, twinkle twinkle, and if youre happy & you know it, with all the hand movements - he loves those too but does not do any of the movements with his own hands. I try and play ball and sometimes he will play but more often not. I sit down with him and play with him with his blocks and other toys, I play peekaboo and hide & seek and those he loves too. He loves me pretending I cant find him and then I do and he gets so excited. What else cna I do? I feel he is slipping.

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iVillage Member
Registered: 03-21-2007
In reply to: morgain13
Tue, 06-26-2007 - 1:02pm
hi,
welcome to this amazing site,and a bunch of amazing women.
my ds is dx with pdd/nos.from your post there are similarities in behaviours,but my son was nearly 8 when dx.there was no symptons of behaviour until he started school.
my advice,tackle 1 thing at a time.i know you want to make it all ok for your child but by doing too much at once, it gets confusing rather than helping.
post anytime,with any questions.don't worry if you think they're a bit silly,if it puts your mind at rest its worth it.
we've tackled lots and lots of problems with ds,so if i can help anytime feel free to contact me.
yvonne xxx
iVillage Member
Registered: 02-24-2005
In reply to: morgain13
Tue, 06-26-2007 - 2:52pm

Hi,

Thanks for responding :)

Can I ask what you have done that has worked? I feel like nothing I do works. Everyone keeps telling me to read to him but I have always done this so that isn't helping!

iVillage Member
Registered: 03-21-2007
In reply to: morgain13
Tue, 06-26-2007 - 3:33pm
hi, do you know how to get onto chat?i'll sign in for a bit,you can tell me what you're having trouble with.if i can help,i will.speak soon.
yvonne xxx
iVillage Member
Registered: 03-20-2003
In reply to: morgain13
Wed, 06-27-2007 - 12:20am

Welcome to the board hon!


I'm sure you will get lots of ideas here.

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iVillage Member
Registered: 02-24-2005
In reply to: morgain13
Wed, 06-27-2007 - 8:59am
Sorry I didn't see this yesterday! I got bombarded at work. I don't know how to use the chat. I'll look around the site & see if i can figure it out. Thanks :)
iVillage Member
Registered: 02-24-2005
In reply to: morgain13
Wed, 06-27-2007 - 9:02am

You know the ST said she was going to start using pictures and even came here with a camera a few weeks ago and snapped some photos of all of us but then she never came back with the picture book. I should ask her what happened to that. I can do that on my own though too. I have several books that just have one picture and then what it is which I have used all along but I wonder if real pictures of stuff he is familiar with (like his pacifier) would be more helpful. Thanks for the suggestion!

I don't watch Super Nanny. I have very little time and am addicted to enough shows already! I wonder if I can find that specific episode online.

iVillage Member
Registered: 06-25-2003
In reply to: morgain13
Wed, 06-27-2007 - 10:51am

Hello and welcome,


Well, being here with a 20mo and a provisional DX puts you way ahead of the game compared to many of us. Kudos to you for being so on-top of things.


I read your post carefully, and I had some ideas. I don't know if they will work,

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 02-24-2005
In reply to: morgain13
Wed, 06-27-2007 - 2:32pm

Paula,

The mirror idea is great - thank you! I will definitely try it. I use the mirror to point to his nose which I've been trying to teach him but I didn't think of using it to do signs that he already sort of knows that he uses my hands for - I like that alot - thank you!

iVillage Member
Registered: 06-02-2004
In reply to: morgain13
Thu, 06-28-2007 - 1:43pm

Hi and welcome to the group! I think it's great that your son has been able to receive intervention so early in life. I hope you enjoy this group as much as I do. It's such a wonderful, supportive group of parents who will understand what you're going through.

Amy~Natalie & Lily's mom

iVillage Member
Registered: 01-02-2004
In reply to: morgain13
Thu, 06-28-2007 - 7:58pm
Hi. My daughter also was diagnosed with PDD-NOS at 3. I understand your sense of urgency to help your son. Try not to worry, your getting him help at a very young age. Time is on your side. I know it seems like you and your son have mountains to move right now, but he will start to make progress. A year ago nobody could have convinced me that my daughter would be where she is today. She went from being speech delayed to being above normal range in speech development. She went from no friends to having 5 she plays with regularly. We were at the pool the other day and she went up to another little girl and asked her to play and the two of them played together for 2 hours without any assistance from me or the other mother. I just watched with joy. She was diagnosed more than a year later than your son! You son sounds a lot like our daughter at 20 mos. I don't know where you live and what kind of services you have available to you, but just make sure you have good therapists. If they don't follow through, or they don't seem to be doing what is best for your son, replace them if you can. You do have to be fighter for your child sometimes. Pictures and social stories were like magic for our daughter. Keeping her involved and active in lots of activities helped her a great deal as well, gymnastics, dance, ice skating, swim lessons, soccer. All helped with social, language, following direction, motor skills. All very important. It exhausted me but it was well worth it. It's all paying off. It will for you too. If there is anything I can do to help don't hesitate to ask. Take Care
Kelly

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