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: 06-28-2007
In reply to: morgain13
Thu, 06-28-2007 - 8:45pm
Hi,
I am new here, too, and will post about myself and my family, but I wanted to comment on your story too (and have already done that in another discussion- I'm starting to feel very comfortable here!).
The other folks are right, it is wonderful that your child was at least "red flagged" so early, it rarely happens. All three of my children have received a diagnosis of autism, and all three were at 22 months or younger. As for what you can do, as a parent and also as a speech pathologist for 12 years, I think the most important thing you can do is decide what services you think your child needs by scouring the different therapy options and seeing what you think best matches your child, and then doing everything you can to advocate for him to get those services in place. It is the hardest part of getting all this news because there are so many different theories and methods out there, how to know what's best for your child is so difficult. What I have heard over and over is, regardless of what you choose, more is better because when your child is actively participating in directed therapy, he is being engaged, and it's all about engagement. Your son actually sounds very much like my kids- if you looked at how each one of them interacts with me you'd likely not have any concern. Bring in another person, though, or try to get some eye contact when he's engrossed in a repetitive activity then forget it- none of my kids could consistently respond to his name before the age of 2. In kids with high functioning autism, pdd, Asperger's and the like, attending and the importance to attend ("joint reciprocity"- I do something, you do something) actually has to be learned. I don't understand it, but somehow the importance is there, sometimes, with the one person that actually has become the child's "regulator" (like you, his beloved mom), but even then it's not nearly as often as a typically developing kid, and nowhere near what it should be with other people. As I've seen with my kids, every single thing had to be learned, from how to share a moment to how to get someone's attention to how to ask for something.
All my kids did sign the way your son is- they wouldn't sign independently, only when holding my hands. I think what's important is that he's signing, and from your description he's actually initiating the request, but can't make the movement without your hands (which is his "prompt"). It could be a motor thing in that he doesn't know how to move his hands without you, or a planning thing, where the muscles know what to do but can't do the sequence without your touch. Wild, isn't it? From a communication standpoint though, I can tell you it doesn't matter why he needs the prompt, what matters is if he's initiating the movement and you can feel that in his hands. Only you'll know, though- which for me I tried to turn it from something I had to make sure his therapists knew to something just my guy and I share. With three kids with autism and what feels like a million therapists and support people in our house, it feels like there is so little that is just for us. . .
You are stimulating him to the best of your ability right now. Intensive intervention, whichever type you choose, can't be provided directly by the parent- you're his parent, not his therapist. I struggled with this for so long (especially since I AM a therapist!) until finally a friend told me "if you act as his therapist all the time, he'll miss out on having a mom". That made lots and lots of sense. Get him as much therapy as you can, in or out of your home, and do the things that feel right to you to spend time with him as his mom. I think that's the best thing you can do.
Hope that helps:-)
Cynthia
iVillage Member
Registered: 02-24-2005
In reply to: morgain13
Fri, 06-29-2007 - 10:31am

Kelly,

Thank you so much for sharing your story with me. It makes me feel so much better when I hear positive things like that!

I live in NY and we have a pretty good Early Intervention program here (or so I am told). Things take a little slow to get going but I think I am finally on the right path. I have filled all the paperwork and had all the meetings to get an OT (for Sensory) and a Special Ed Teacher for communication (and he already has a ST). The special Ed teacher starts today and I'm really excited to see what she does. I know the ST plans on using pictures which she always forgets but I do like her so I think next time before her appointment I will call her & remind her to bring in the storybook she made for Victor (it has pics of us, our dog...).

Victor just started daycare 2 weeks ago and I think that has helped. He still cried during the transitions of us leaving him in the morning and they tell em he also cries when they come in after being outside but he is letting the teacher hold him and he will go sit on her lap and he even will go up to some of the lids to see what they are doing! His ST has been going there a few times and she says that he is alot better for her there than at home - I guess I distract him. So I might start letting her go there for their sessions from now on.

iVillage Member
Registered: 02-24-2005
In reply to: morgain13
Fri, 06-29-2007 - 10:40am

Hi Cynthia :)

I'll look for your Intro post.

I agree that more is better & I am kicking myself that when we first had Victor evaluated (at 16 months) they suggested ST & Special Ed but we wanted to start off slow so we only chose ST. But even though it seems a lifetime to me I keep telling myself that he is only 20 months and that is still early and he is starting Special Ed today so I haven't lost that much time.

Victor did something very exciting yesterday - he put his hands together when I asked him if he wanted more. He didn't do that back & forth movement but he was clearly communicating that he wanted more - he did this over & over for his pretzel snacks. I did it with him this morning too but he seems a little lazier - sometimes he would do it and sometimes he wouldn't but my ST said to keep doing it over & over or he will lose it. A few times I didn't even prompt him with the word more - I would ask him what he wanted and he still did it (though my talking might be aprompt anyway).

How old are your kids now? Maybe thats all in the Intro post. I can't wait to hear about their stories as I assume they are older & have been going through therapy longer.

iVillage Member
Registered: 01-02-2004
In reply to: morgain13
Fri, 06-29-2007 - 12:28pm
If you haven't gotten it already get the books The Out of Synch Child, and Activities for the Out of Synch child. They are great. I got so many great ideas for activities that I could do at home with Riley that she thought were fun and didn't even realize that they were forms of therapy for her. Your decision to have the therapist go to daycare is excellent. It's way better to do it there than at home. When we got our dx we decided to keep her in her typical preschool and have all the therapists go there and work with her in the classroom. It was hard for me at first being the only parent who had a child that needed extra help but it was definitley the best way. The therapists were able to use the other kids in the class as models with speech and social interaction, etc. Riley is now down to just getting OT to help her learn handwriting, etc. to prepare for kindergarten. Again it is so great that he is getting help at such a young age. By the time he is ready for kindergarten he will have progressed so much! Take Care, Kelly
iVillage Member
Registered: 06-28-2007
In reply to: morgain13
Sat, 06-30-2007 - 11:28pm
My little cherubs are 5 1/2 and headed to kindergarten in Sept (about which I'm ready to have a stroke), 3 next Tuesday, and 1 1/2, so actually they aren't "older" older (I think, like, headed into middle school when I hear the word "older"). The gains, however, when early intervention is really early, are absolutely remarkable, and data supports that. It's equivalent to the myriad of skills a baby typically picks up between birth and one year of age. It's just that we as human being are so used to seeing that remarkable rate of growth. What we're not used to seeing is a child who is essentially non-verbal at 2 1/2 talking in 2 and 3 word phrases at 3. Now early intervention (EI) doesn't always work this way for every kid, and EI is just the classifier of the service, not any specific intervention method, but EI has such potential for young children with autism because they're young. "Neurotypical" kids (you like that?! Crazy terms they come up with!) learn many things between birth and five, but learning how to learn usually isn't one of them- that's supposed to come naturally. With my kids, they have all had to learn how to learn, the intervention that has worked for them (and so I will be getting my third into very soon) is Verbal Behavior Analysis, which I'm happy to tell you more about, and it has worked. The middle one was still non-verbal, and practically non communicative at 2 1/2 years. Now he's turning 3 next week and is using 2 and some 3 word phrases- it's pretty scripted, pretty rote, but it's coming, and this child who could care less that anyone was around him at 16 months now knows exactly what's happening around him and is totally aware and involved in his surroundings. The other day when he POINTED in the sky to an airplane and said "airplane in sky" I just about fell over.
I'm very proud of my guys, and if I can figure out how to get a photo of them up here I'll post it. Not of them all together, mind you, I don't think we've been able to sit for a photo all together since the baby was born!
Cynthia
iVillage Member
Registered: 02-24-2005
In reply to: morgain13
Mon, 07-02-2007 - 8:51am
Is VBA a type of ABA? I've heard a lot about ABA but I don't know exactly what it is except that its intensive. That is so great to hear that your little one went from no words to sentences! I hope that EI works for us too. The Special Educator started last Friday and the OT starts today (for Sensory) and we've had the ST for a few months now. He started daycare camp 2 weeks ago and honestly I think Daycare has done more for his development then ST has, but hopefully with all of these things now, he can learn to learn!
iVillage Member
Registered: 06-28-2007
In reply to: morgain13
Mon, 07-02-2007 - 3:34pm
Verbal Behavior Analysis uses the principles of ABA and, actually, operant conditioning, to shape pre-communication behaviors like attending to others and sharing events with others ("joint attention"- both people looking at a plane in the sky, then looking at each other to acknowledge the event), and to ultimately shape appropriate communicative behaviors. The concept was shaped into an intervention method by Vincent Carbone, and you can find out a lot more on his website. I had looked into Floortime a lot when we first started this adventure- that is a method developed by Stanley Greenspan and is totally different from VBA or ABA. We ended up using components of floortime and we still do, but each child seems to be responding to floortime differently, where they are all responding to VBA with the same success- it takes a while to see it, but it has happened.
It doesn't surprise me that you're seeing more improvements at daycare then with the speech therapy alone. I think I saw in an earlier post, and I agree, that speech should be done at the daycare if possible, along with home for carryover. While home is a primary learning environment for young kids, it doesn't allow for the variety in communicative demands that daycare does, and if he's in daycare for any part of his day, then it's a primary learning environment, too! Plus the peers there offer a huge advantage over home- positive peer pressure! My oldest has made many improvements thanks to the gentle nudging of his peers, and the middle one has reverse mainstreaming opportunities where typically developing kids come to his class and he can see what typical language and behavior looks like. Maybe, if you have a nephew or niece, or a family or neighborhood friend with a little one to participate in some home based speech therapy with your son, that could be helpful.
Anyway, I'd love to talk more about VBA if you'd like! If we can figure out this chat thing. . . !
Cynthia
iVillage Member
Registered: 02-24-2005
In reply to: morgain13
Mon, 07-02-2007 - 4:05pm

Victor will display joint attention *sometimes*. If I point at something he can look but if he is focused on something else he will ignore me. He will look at me when seeing someone new or when someone is asking him something to show me he's scared (I think). My battle is trying to get him to do this consistently (and other things like look at me when I say his name, come when I say come...). I will check out the site on VBA. Thanks.

I did look into Floortime and do incorporate it into our day - I try to spend as much time with him as possible but its hard when you're a working mom!

I have no idea how the chat works - I clicked on it and then I get a new window but I don't know what to do then!

The daycare thing makes sense. I will definitely tell his ST to go both day sthere from now on. I still want the Special Educator & OT here at first so I can learn from them but then I will send them to daycare too.

iVillage Member
Registered: 06-28-2007
In reply to: morgain13
Mon, 07-02-2007 - 4:57pm
Oh, absolutely, you want all the service providers in your home so you can see what they're doing, ask questions, etc. You might want to talk to the daycare about all these services your son is getting and how they feel about having these folks in their establishment. It can be overwhelming for some providers, in other situations when the daycare sets up lesson type activities (which for 2 and 3 year olds is mostly losely structure play activities) a special educator can be seen as a person coming in to tell them what to do. In my situation "consultation" has been bumpy, and that is certainly different from a service provider with a specialty coming into your son's daycare and helping him take advantage of naturally occurring events. If there starts to be any "well you could make the lesson more appropriate for him if you. . . " from the special educator or "you should have him sign like this" from the ST, the daycare people could respond really well, or have a very tough time with it. You just want to make sure you talk to the daycare people first- you may have already done that!
I have no doubt you're doing everything you can to spend as much time as you can with your son. Floortime is a very difficult, intense and tiring program, and I really am lousy at it even though I've been trying to do it for 4 years now. . .and I don't even work out of the house!! I can't imagine doing all this and working a full time job (that's the plan for me in about 2 years, but I'll worry about that later!)
Cynthia
iVillage Member
Registered: 02-24-2005
In reply to: morgain13
Mon, 07-09-2007 - 12:33pm

Hi,

Sorry it took me so long to post - I was away for the weekend.

The daycare he goes to now actually has an EI program in it - I don't use it - he goes to the regular class but they are all familiar there with kids with PDD/Autism. I might transition him to the program at some point but for now I like having the therapists come here part time & part time there.

Working full time is hard but so far I only have one child (three if you count by husband and my dog, lol). I can't imagine dealing with more right now and yet I want more children. I am sure I will find a way to make it work when that time comes. I know the likelyhood of my next child being on the spectrum is much higher now which is a lot to take in and it saddens me but what is meant to be is meant to be!

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