Questioning my DC's recent pdd nos diagnosis...would like some input please

DC is 26 months and was recently evaluated. Concerns are

1. speech delay
2. some congnitive delay
3. little eye contact ( I personally think it's fine but proffessionals say there should be more)
4. Not so interactive with adults and peers
5. Can fixate on a certain toy or new toy for awhile. ( Some staring but mostly just holding on to it for awhile)
6. Does not point.

He has no other issues that fall within the spectrum.

He recently attended a full capacity gymboree class and had a BLAST. He went down every slide on his own, he climbed like there was no tomorrow, he participated in one of the setups at gymboree, he hugged two girls then a boy but unfortunately bit him in the shoulder in excitement not because he was angry or anything. I think he was so happy and since he can't communicate he did that, I felt so bad. He grabbed two balls at a time and shot some hoops. When he did see the ball on the floor he would yell Ba!, Ba! There were so many small things thrown all over that I thought he might pick them up and fixate but he didn't he was just all over the room. I was so happy to see how happy he was. What woman told me he was very expressive out of nowhere. What I didn't like was him going up to a few women grabbing their hands to go with him somewhere to play maybe? I do know at this age they should be nervous of strangers but my son is not and that' s a concern because I think I heard that could possibly be a sign of pdd nos??

I just think the way he acted in this class was pretty normal behavior do you think so and if so it just makes the diagnosis harder for me to swallow. I do understand their are some EI people on here and I would love to hear from you as well as all the other moms. Thanks so much!

Edit: Just want to add at home just now he stuck a toy minnie mouse figurine in a toy truck and was saying vroom and moving the truck back and forth. Def. doing some pretend play as well today.

Message edited 9/29/2011 3:18:28 PM.

Re: Questioning my DC's recent pdd nos diagnosis...would like some input please

It's OK and quite normal to question. Who knows "they" may even be wrong but so what, he'll just get that much more attention to detail and it will only help him progress. Labels are hard, I know. I have a 3 year old with PDD and a 7 year old with Autism. My 3 year old does all that your son does, has full language, knows every single animal, sound, ABC's, can count to 100...I could go on and on. But he is different. It's easier for me to tell because I also have a 2 and 1 year old that are typical so I can see the differences. Just with the simplist task he performs different than my 2 year old. But he's got the dx., and I'm rolling with it. He's come so far and is still going. I truly believe that someday his label will fade away.
As for my 7 year old, no Life is a struggle for him and he's non verbal. They are night and day and it boggles my mind that there both placed in the same catagory. So it is what it is and my point being try to forget it, take all the help and hopefully when he's older and you can look back and just smile. GL!!

Re: Questioning my DC's recent pdd nos diagnosis...would like some input please

Your son sounds so so much like my son at that age. Johnny was evaluated at 27 months, shown to have pdd-nos.

He just turned 5. The diagnosis was changed at 3.5 years old...no long showing signs of being on the spectrum but possible ADHD...we are still wondering about that.

He has full conversations, friends, playdates all the time, loves his little brother, and is just doing wonderfully. I thank god everyday for how things turned out.

I would not put a stock in the pdd diagnosis...do what i did....i looked at it as a tool to get services. I never changed the way i thought about my son..i thought of him as a wonderful little boy who had trouble communicating sometimes and had some sensory issues.

His language took off...then things started really turning around. The pretend play you mentioned is a GREAT sign..it really is. There are many positive things there but i understand the pdd-nos diagnosis for now. As for the pointing....i would take his hand, isolate his index finger and point it up to something while exclaiming and labeling it. "OHH look at the plane in the sky!" or "Oh look, there is your blue cup!". He'll start doing it himself with time.

If you want to fm me, feel free! I've been through it all!

Re: Questioning my DC's recent pdd nos diagnosis...would like some input please

Re: Questioning my DC's recent pdd nos diagnosis...would like some input please

I agree with the others, even if you have doubts about the diagnosis, take it seriously and get any services that are available to you now while your DC is so young.

The symptoms for PDD-NOS and any autism spectrum disorders vary greatly from child to child, but sensory issues and socialization issues are pretty common as well as speech issues. My son speaks very well, his vocabulary is in the superior range, but his pragmatic speech test scores were quite low, so there is a disconnect. On some level he speaks well, but he has difficulty talking to people in a group, his peers, or adults he does not know well. He doesn't have cognitive delays, but he has fine motor delays and sensory processing issues. But his diagnosis is the same, PDD-NOS. I think you mentioned rough play or too strong hugs, and DS does this too. I guess I'm saying your child may have some symptoms and not have others--every child is different. It's great that you are seeing some pretend play--we finally are here too, but it follows a few months of therapy, so it's fantastic your DC is already doing this on his own.

But I would read whatever you can about PDD-NOS, autism, or sensory processing disorder (if this is an issue) and do what you can for him. If it turns out that he doesn't have this at all, great and none of the therapies will have a negative effect on him--most are fun actually. For my DC, I figured I'd rather err in that direction than ignore the red flags and realize when he's in Kindergarten that he needs a lot of help.

Re: Questioning my DC's recent pdd nos diagnosis...would like some input please

My DS was over 3 years old when he was given the diagnosis.

Since recieving services, he "took off". His speech, social skills came a long way.

We are still working on eye contact (just a bit) and he still stims (a bit here and there, but, he's learning how to control it).

Take the services! Your DS will come even farther along.
Like someone said, the diagnosis can vary child to child.

Re: Questioning my DC's recent pdd nos diagnosis...would like some input please

DD is PDD-NOS and I understand how hard it is to digest hearing that your child is on the spectrum. The label is there to give you services and they can never hurt-only help!
Every time I look at DD's IEP, it's like someone is punching me in the gut. She was 3.5 when she was diagnosed and within weeks after starting services, her improvement was amazing. It will get easier...trust me!

Re: Questioning my DC's recent pdd nos diagnosis...would like some input please

Just wanted to send hugs and to let you know, that your "gut" rarely will mislead you. (in fact, my dd's nutritionist calls it the second brain lol).

Don't get caught up in the label or diagnosis. Just focus on what needs to be addressed so your ds can progress. Sometimes these kids just develop "out of order", find the strengths and build upon them. The strengths will trickle down to fill in the holes of what may need improvement.

Re: Questioning my DC's recent pdd nos diagnosis...would like some input please

My DD was diagnosed with PDD recently as well. Right now, we're in the middle of getting her re-evaluated by a developmental ped at LIJ. We had our first appt this week and we go back in 2 weeks, then we'll get our diagnosis. DD was evaluated by EI and there were quite a few discrepencies in the reports that we're not true of DD. I'll give you a few examples. OT evaluator said that DD can't pull her socks off. They day the evaluator came, she was barefoot and she has been seen pulling off her socks. That evaluator also said that DD gets irritated by loud noises. The sound of the vacuum, blender makes has no effect on her, not to mentioned the other day we walked past a construction crew using a jackhammer and this kid didn't even flinch. They pyschologist said that DD was afraid of her doll. Unless the doll is Chucky, she never showed any signs of fear towards any toy. One of the therapists wrote that DD can't feed herself finger food. She can feed herself finger food, but it has to be when she wants to eat. Don't get me wrong, I know that DD has issues, but if you are going to write a report about a child and come up with this kind of diagnosis, get the facts right and tell the truth.

DD has some words, she learns new ones almost everyday when she watches Nick Jr.

Following commands isn't really there. Occassionally, she'll do what you ask, but its rare.

She likes to line up things.
She has sensory issues. Loves to chew on her straws in her sippy cup. Still puts everything in her mouth.

Right now, she gets speech and special instruction, but the pyschologist suggests ABA therapy. I'm waiting for our next appointment with the ped. devel. doctor before making any changes.

One thing that I would like to add was what the ped. devel. doctor told us. The diagnosis isn't set in stone. Things do change and with the help that the child needs, he or she will not have this label for the rest of their life. When I first told our coordinator that the psych. said PDD, she said to take the label with a grain of salt. Don't get me wrong, we were upset with the diagnosis, but I know that it will not follow her for the rest of her life because she's going to get the help that she needs.

Message edited 10/1/2011 8:54:57 AM.

Re: Questioning my DC's recent pdd nos diagnosis...would like some input please

I'll echo what a lot of other posters said.

While it didn't feel like it at the time and hearing it was crushing and earth-shattering for us....his diagnosis was the best thing that could have happened to us. My son was also sort of displaying some characteristics and not others. It seemed like you could argue it either way. However, once EI heard PDD it was like an instant hook-up to services that they weren't giving me before. He had already been in the EI system for a year before the diagnosis and we were barely getting an hour or two a week of therapy. It was pathetic. And had they continued to not take us seriously had we never gotten the diagnosis I don't know where my son would be now. He has made phenominal progress. We're not out of the woods yet and not sure that we will ever be but I have purposely not gotten him reevaluated because at this point it doesn't change anything. And I don't want to give his school any possible reason why they would take away anything he gets now.

Re: Questioning my DC's recent pdd nos diagnosis...would like some input please

I just wanted to add many hugs . And while getting DSs diagnosis was very upsetting to say the least, finding out what might be wrong was oddly liberating to me as a mother, if that makes any sense. For me, something didn't seem right for awhile, and having some idea of what was wrong, was very helpful to me in accepting my son as he is right now. I guess I understand why he does certain things, and while we are absolutely trying to get all the help we can for him, there is a level of understanding that was not there before. I don't know if this makes sense, it's hard to describe.

When you don't know what's wrong, it's easy to second guess a lot of the things you do as a parent, or at least it was for me. Dealing with the known is always easier for me than doubts.

Feel free to FM if you would like.