I posted recently about my DS and we just got a preliminary dx of PDD-NOS for him. Next, I have to take my referral to an occupational therapist now for a full examination and follow up therapy I guess.
I have sifted through the threads here but it's so hard to find the answers to my specific questions, so I apologize if I am asking things that have been asked so many times before and I thank you for your understanding!
First of all, our pediatrician said that because DS did not actually show signs of regression (loss of language, withdrawal of affection etc.) and because DS is so advanced in some ways we should be cautious about overreacting about the dx. I don't understand this exactly- DS has shown a rapid increase in the symptomatic behaviours of ASD lately (echolalia and other speech things, spinning, lining up toys, playing with parts and wheels, etc)- does this not count as regression? Also I failed to ask if we should EXPECT regression, loss of language, withdrawal of affection? What does it mean if a child doesn't regress in the typical ASD ways but still exhibits spectrum behaviours? Is regression pretty much guaranteed to occur eventually?
I don't know how long it will take to get my son an appointment with the OT. There might be a significant wait. What can I do in the meantime to start helping him? Can someone recommend books that I can read to grasp what I can do as a caregiver to offer him the best support at home? This is really important to me and I am so in the dark right now and feel like what I normally do with him is not enough. I want to help.
Is the PDD-NOS dx pretty likely to change over time or after a more extensive evaluation? It seems from my limited reading that PDD-NOS can be a sort of catch-all dx. Should I be trying to get a more specific dx in order to tailor ds's treatment? Or is this broad dx better in the long run in terms of giving him more options for treatment?
Finally, we have been dealing with sleep issues for DS for a long, long while and they seem to be getting worse by the day. We have been trying to successfully night wean DS for 6 months- he still consistently wakes up asking for milk getting violent and very, very upset. I have health and anxiety problems that are partly caused as well as exacerbated by ongoing sleep deprivation we've experienced since DS was an infant. My original plan was to have DS completely weaned around the time he is 2, because we were planning to TTC (we are putting this on hold indefinitely now) and for my own health reasons. DH is saying that the only way to get him to stop asking for milk at night and tantrumming about it constantly is to completely wean him at once (He nurses 2-3 times a day). Now I think his resistance is related to his ASD. I don't know what to do now- I still want to wean him, but it's so difficult and he is so resistant to changes in this regard. I know we can't continue with the sleep situation getting worse and worse though. I don't know what I'm asking here- does anyone have experience weaning a toddler with ASD? Or dealing with terrible sleep problems?
I feel like I have more questions swimming around in my head, but can't quite sort them out now. I am so thankful for this resource and that there are caring moms sharing their advice and experience here on MDC. I never knew how much I would need it.
Thanks again for reading.