Mothering Forum banner
1 - 3 of 3 Posts

· Registered
Joined
·
427 Posts
Discussion Starter · #1 ·
I'm looking for mamas who have a child with a PDD-NOS diagnosis.

I posted a couple of months ago in Toddlers about my son's speech and language delay. He is now 20 months old with almost no language at all. He has no words, and he understands almost as little. At his last evaluation they mentioned PDD-NOS, Pervasive Developmental Delay - Not Otherwise Specified. This is the first I've heard of this, but they told me that it is like autism, but for kids don't don't fit the technical autism diagnosis. My son has some signs of autism, like not holding eye contact, strict adherance to a daily routine and schedule, no attempt to communicate (no words, gestures, or imitations), and so on. However, he doesn't have many of the social charactersitics, like he does point things out to me, he pretend plays, he is generally very affectionate and tries to make people laugh.

I'm not sure what questions I have. A professional tells you that your son may have something like autism, and it's like your brain just shuts down. I wonder at what point they would actually diagnose this? Am I going to have to wait for years to have a diagnosis? Once he is diagnosed, then what? I wonder what kind of journey this will make for us as a family. My head is just spinning right now.
:

In my heart, I know there is something that is wrong with my son that goes way beyond "late talker." I've always felt there was something off about him, and little clues and puzzle pieces are starting to materialize. D*mn, I wish I had been wrong.


I do have another question, for those with more than one child. How do you keep from spoiling the one who has a diagnosis? Right now I feel like I want to buy him a million toys and take him somewhere quiet and just hug him for hours. I'm guessing this will wear off?
 

· Registered
Joined
·
427 Posts
Discussion Starter · #4 ·
Thanks, Laura. My son has been in speech therapy for more than 2 months, and we have been using signs at home. I know that he is communicating, especially how much he loves me. But as far as verbal communication goes, either receptive or expressive, he has no interest at all. He has made no progress at all in ST, and actually, he seems to have regressed. He could say mama and daddy specific when we started therapy and he had one word, but now he has no words at all, and doesn't even say mama and daddy anymore.


Thanks, skellbelle, I'll look into that.
 

· Registered
Joined
·
427 Posts
Discussion Starter · #14 ·
I haven't come back to this thread because I've been mulling over the posts for a while. There has been so much support and so many words of wisdom here that I am in awe.

I'm feeling much better about the whole thing now. I was devestated. Now, though, I know that I just love him for who is he, and that is not conditional. So I love all of his quirks as well, because it's just a complete package of who he is. This realization has really helped me relax and stop focusing so much on trying to figure him out.

I have lots of decisions to make, like how much I'm going to push for a diagnosis, or if I'm going to push to not have him diagnosed right now. I also need to figure out if or what I'm going to tell the family as well, and how I'm going to handle strangers when we're out if the situation arises.

I need to let go of knowing what the future holds for me and my family. I'm not a real day by day kind of person, but I need to learn to be one now. I'm kind of feeling my way along right now, but I also feel confident that we have a strong loving family and we'll be just fine.


How many hours of therapy do your children do a week? I'm having a bit of a struggle with the ST because our insurance has approved us for 2 hours a week, but I haven't been able to get them to get them to schedule us for more than 30 mins a week. I am pretty sure that during our follow up ped. developmentalist appointment he is going to set us up with the therapy that PDD_NOS kids need, but I'm not sure what that entails.
 
1 - 3 of 3 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top