Anonymous wrote:I am so upset and obsessed with my son's recently diagnosed disorder. I can't stop thinking about it, researching it, and don't want to do / talk about anything else. I'm constantly on the verge of tears, it's definitely not helping anyone! I'm just so worried and feel like I HAVE to figure out the right school and therapies or else all will be lost. I guess I'm just reaching out for any words of encouragement or advice. I feel very isolated from friends and family right now.

OP, one day at a time. Knowing is better than not knowing. This way you can make a plan, but it doesn't have to be today. Big hug.

Anonymous wrote:^Social Pragmatic Communication Disorder is not Autism Spectrum Disorder but it's own diagnosis so whoever diagnosed did not give an "easy" diagnosis.

We have both diagnosis. It was a very easy diagnosis for us to be given with an hour evaluation.

^Social Pragmatic Communication Disorder is not Autism Spectrum Disorder but it's own diagnosis so whoever diagnosed did not give an "easy" diagnosis.

We have that too and its only important for treatment/insurance. I freaked out with PDD but I don't fully see it. Your child is the same wonderful child before diagnosis as after. Look at the diagnosis as a tool to get him the help he needs to succeed in life. I find a lot of speech delayed/issue kids are lumped in with autism as its an easy diagnosis rather than taking the time to look at what is really going on.

OP, I know the unknown is very frightening. You are dealing with a new normal. You are going to assimilate this new information in pieces and your sadness is going to abate, little by little. Your child is the same sweet boy.

Right now you are flooding yourself with data, which in a way is good. It's like wearing the t-shirt and singing the theme song. But allow yourself to still trust your instincts -- this is your child, not an illness or a case study.

My eldest is similar. There used to be a diagnoses called Pragmatic Semantic Disorder and I think this is a new version of that. He is partly pragmatic and sort of HFA but without the stims and OCD tendencies.

You will get there. It takes time. Take deep cleaning breaths whenever you remember. Finding a good social skills group was the first best step we took. He started in 4th grade. At first it was the only place he went where kids looked forward to seeing him every week and he them. If you live in NOVA near Falls Church, I would recommend his social skills facilitator. I also go to see her on my own from time to time when I need to sort things out. My youngest sees her on a monthlyish basis for anxiety related to his LDs/ADHD.

Taking time for yourself is important too. Doing stress reducing things. For some it is walking, meditating, gardening, cooking, cleaning, meeting a friend for coffee... What ever floats you to the sea of tranquility (or at least in that general direction).

Other things that have worked for DC is to be active in our Congregation. Our Congregation is very welcoming and he has foun d his place in the senior high youth group. Whatever your faith (evenif athiest or agnostic) there are Congregations that are welcoming.

Scouts has been a great help. This was a hard one for me as I have several isuues with the national group, but on a local level they are great and welcoming.

Playing an instrument is another activity that is social and feel social even if they are not interacting as much as an NT student would interact.

What doesn't work is holing up at home and not venturing out or limiting outside contact.

Online I have found the "Shut Up about your perfect kid" ladies to be great. Wrightslaw.com has been extremely helpful

PPs - THANK YOU. It's amazing how much a few kind words help. I truly appreciate your empathy and compassion. I've dealt with a lot of challenging things, but this experience is truly overwhelming.

Anonymous wrote:OP here - thanks for the advice. I have a therapist and am taking meds. Guess I'm looking for "been there, done that" words of encouragement from anyone who has progressed beyond diagnosis / panic to plan / new normal.

I've been there and I feel for you. I went through something closely mirroring stages of grief, i.e. denial, anger, bargaining (should've done X, if only Y...), depression, acceptance, etc. Allow yourself to have the feelings and you will progress to acceptance over time. And while I think this board is amazing, try not to spend all of your time on this and other boards. I was obsessively trying to read everything, searching for some magical answer, and it overtook my life. Try to take breaks to think about and do other things. I also had to remember that my DS is a lot more than his diagnosis, and he will change over time - things will not always be how they are now. You will progress to a new normal. Promise. Hugs

Hang in there, PP. We have all been there. When my child was diagnosed I couldn't even really admit to myself for months. The first time I actually heard it said out loud casually by a practitioner in passing made me dizzy with anxiety. So I totally get it. I have a couple of pieces of advice. First, do reach out to others, it will really help. After a while so many of my friends were people who had SN kids and we started to be able to laugh some things off, to roll with the punches, to give each other support and advice. Second, give it time, it absolutely gets better. Good luck to you!

Diagnosis is Social Pragmatic Communication Disorder. New diagnostic code. Probably would have been PDD-NOS under DSM-IV. Significant language delay and was hoping that the behavior was rooted in language, but got a differential diagnosis that I trust that there's a social delay element as well. I guess it's an atypical Asbergers - with language delay. Sweet kid, social nature, withdrawn at school. I've got lots of professionals advising, but struggling with my own panic and sadness.

You will get through it, because you have to. It will get easier and the feelings of overwhelm will dissapate.

OP here - thanks for the advice. I have a therapist and am taking meds. Guess I'm looking for "been there, done that" words of encouragement from anyone who has progressed beyond diagnosis / panic to plan / new normal.

OP, my heart goes out to you. Can you tell what the diagnosis is? Perhaps it might provide some encouragement from those who have been where you are now?

Find a therapist for yourself stat. You are going to help navigating your emotions through this and a therapist can do wonders in helping to reduce anxiety (either through talk therapy, anti-anxiety meds, or preferably both). And I'm so sorry you are feeling this way.

I am so upset and obsessed with my son's recently diagnosed disorder. I can't stop thinking about it, researching it, and don't want to do / talk about anything else. I'm constantly on the verge of tears, it's definitely not helping anyone! I'm just so worried and feel like I HAVE to figure out the right school and therapies or else all will be lost. I guess I'm just reaching out for any words of encouragement or advice. I feel very isolated from friends and family right now.