Tentative Diagnosis: PDD-NOS

Glendi2.0

Sylvie?s evaluation was yesterday, and like expected, it looks like her diagnosis will be PDD/NOS. Even though we were pretty prepared for this, it?s still a very confusing wave of emotions I?m feeling? sadness, validation, anxiety, even some relief that the diagnosis wasn't more "severe" (if that even makes sense.) We meet with the doctor again next week to get the official diagnosis and should receive her formal report a week or two after that. I guess that?s when the real fun will begin? in the meanwhile, I?m going to try and not freak out about some of the stuff the doctor mentioned, like 20 hours of ABA therapies PLUS another 10-15 by me... seriously, how does that even happen when I have another child in the house?!?

bethmont

The home programming part should be more naturalistic part of interacting at home. You should be given some explicit strategies to try while you play, go shopping, eat meals, get ready for bed, etc. Home programming should involve your other child. If older, the sibling could serve as a model. If younger, the sibling will simply be exposed to more explicit prompts for doing things.

For example, if you are working on developing your child's ability to verbalize wants, you may require that the child says "milk", or "milk please" before giving them a cup of milk. You might model by saying "milk please" (the desired response) and have your child repeat. Here a sibling could serve as a model, where they say "milk please" and you give them the milk. Then it is your other child's turn.

 It probably sounds like an exhausting addition to your day, and at first it can be. Eventually it becomes second nature.

Be sure to ask for specific skills and methods you can use at home, and don't be afraid to ask  the therapists to show you how to do what they want you to do at home. Usually, they are more happy to do so, since help from home really makes their job easier and helps your child make gains much faster.

Glendi2.0

thanks for the advice, ladies... I'm hoping that as we continue down the path of figuring out treatments for Sylvie, things will become clearer as to how to manage it with a sibling... Amelia's 19 months older, and very demanding of my attention these days, so incorporating her into whatever we'll be doing is probably the most important strategy.

skittles_123

We primarily have therapist working with our ds and that is about 16 1/2 hours a week right now. I do some work with him on the weekends (I work), maybe 2-3 hours the entire weekend. We also have a younger dd, who is 14 months old. So, he is getting a little less than 20 hours. My dh or family helps watch our dd when I do therapy on the weekend. I also try to squeeze some in during her naps as well, thank goodness she still does a morning nap. Our goal is to up it to 30-35 hours, but he just started his program 3-4 weeks ago, so we don't want to overwhelm him just yet.

Our application for medicaid (one for disabled children) is being processed and it can take up to 2 more months at this point before we hear anything. We are going to turn in his services as respite services, per the reccomendation of our therapist, as they do not cover ABA.

We also are going through our insurance company right now and our first ABA claim is being processed right now. I already know they will deny, because they told me they would before I even submitted the claim. But, we have to go through this process and appeal it and get denied before we go directly to my dh's company hr department, who said they are willing to go ahead and foot the bill.

So, the reason I say this, is right now, the hours we have are all we can afford to pay right now. We actually cannot afford all of it now, but we are hoping to get back payed from somebody. If we get someone to pay for all of these services, I may be able to cut back my work hours to provide more therapy myself, or if we can find more therapist, we may go that route as well and I will continue to work.

Try not to overwhelm yourself too much.. . it will all work out!