PDD and the future

[Dana322]

I have three sons.  One son "E" dx with PDD-NOS(mild) (DOB 8/30/01) in Nov. and twins "N and B" (DOB 10/09/01) dx in Feb. with speech delays.  They have been evaluated up the ying yang and are receiving all appropriate services.  

The twins are not progressing from their therapy.  EI is very well meaning, but ineffective.  Private therapy didn't really work for the twins either.  I really feel like they just aren't mature enough to accept instruction from a stranger yet if that makes sense.  Also I think the ped. was being conservative with her dx and I suspect they are PDD too because their behaviors in many respects are just as bad, if not worse, than their older brother's.  This makes me so sad because I wanted reassurance and I think she missed the mark.

I feel like a more of a case manager than a parent lately.  I'm having a crisis of confidence with our health care providers and I feel like I'm the only one who knows what needs to be done.  I hate that.  I need help, I don't know everything.  It's so hard to find real help for this.

And I don't like having my schedule dictated by so much useless therapy.  I've already cancelled OT because it was a big load of nonsense.  But even the speech therapists don't get 1/4 out of the boys that I do and they're supposed to be the "experts".  I really called them for help and they're just turning out to be a nuisance.  

As you can tell, I'm feeling REALLY sorry for myself right now.  And I don't want to see a therapist or be on meds myself because no amount of talking is going to make me feel better about this unless I can DO something productive, which, up to now has been pretty much a bust.  

I just want some hope.  I'm beginning to think this is how our lives are going to be.  I understand there are worse things in life to have, like schizophrenia.  But are my boys destined to have lives filled with therapy appointments, psychiatric meds, behavioral problems and torment from peers?  And are my next 20 years are just going to be filled with pain and frustration, staying up nights crying and feeling so scared?  

I've tried to read as much as possible about older kids with these problems for some hope but it really just seems like it never ever will get any easier.  Will my boys be pigeonholed in school as "Special Eds", assaulted by bullies, fail socially, lose self-esteem, smoke lots of weed, go to some dork technical college (if at all) and spend their adult lives single, watching Star Trek and working in IT departments or on the night shift of the Uni-Mart? I'm not trying to be cute...I feel like they don't have a prayer here!  If this is what they have ahead of them anyway I'll skip the "interventions" thank you and just focus on enjoying our lives.

I guess the question is, will anything I do make much of a difference here?  That is the question it seems like no professional I've spoken with wants to honestly answer, because I think they don't know any more than I do.

[Kevin Kennedy, Ph.D.]

Are the dates of birth you noted accurate?

Due to developmental changes that occur rapidly with youn children, it is very difficult to diagnose (except in moderate-severe instances) PDD in young children. In a sense, you do have to wait until development proceeds and you get a surer indication of developmental status over time. It may well be that the providers with whom you are working are not trying to avoid some bad news, but rather are respecting the reality that it is precarious sometimes (depending on the condition) to make firm pronouncements during the first several years about conditions for which developmental issues are at the heart of the matter.

For children with mild PDD, interventions certainly can make a differnce, and there's no need to be pessimistic about this. The best thing is to look at what's in front of you now and try to respond to it, without forecasting a future that is so bleak. Yu're creating a reality that isn't there right now, and that would be discouraging to anyone.

Many young children respond well to Speech/Language therapy, while others don't. Be frank about your observations about the twins; let the clinician know what you're thinking, and see if it does make sense to suspend the sessions for now and pick them up later. Also, if you're able, obtain a second opinion about the children, so you can be confident about the diagnoses.

[Dana322]

The dates of birth are wrong, my oldest is 3 and the twins are 2.  Your recommendations make a lot of sense and I appreciate your candor.  When you are a parent in this position, you often have therapists who push vigorously to "help" as much as they can and that more is always better.  I really needed someone to tell me its okay to back off a little.

[Shiraz]

I have a 4 year old boy and twin 2.5 year old girls.  One twin has been diagnoses with PDD-NOS. She is very "unclear" and we have found a fantastic kindergarten for the coming school year (where she is right now with her sister). They are completely different and not dependent on each other at all. However, I feel that they get a little more self-confidence from each other's presence.

My dilemma is that I have the option of sending her to a special needs kindergarten where she will receive one on one treatment all day long. I have had a 2nd opinion on the diagnosis and she recommended keeping her where she is in order not to separate her from her twin as this may cause trauma that is not reversible. I prefer this myself as her teacher is fantastic - very willing to learn all about PDD and help us. She would have a "shadow" just for her to help her in the kindergarten approx. 2 hours a day and we would send her for private clinician/music therapy twice a week. My problem is that I cannot decide which is the best thing for my daughter.  She is so happy where she is but she has no speech yet (her sister is also slow developeing speech - they are bi-lingual). I don't want to miss out on the possibilities that intensive therapy can give at this age but on the other hand if she is merely delayed in development and the extra help in regular kindergarten this year will bring her up to speed then I don't want to miss out on that either.

Has anyone got some advice for me from their experiences?