posted at 9/22/2011 4:20 PM EDT
Hi - my godson was recently diagnosed with PDD-NOS (Pervasive Developmental Disorder—Not Otherwise Specified). I'm wondering how I can support my friend as she navigates through this difficult time. I used to be a special education teacher in a public elementary school, so I can help her with the IEP team process, etc., however I don't have a lot of direct experience working with kids with this diagnosis. I don't want to overwhelm her by sending her all sorts of websites that I've come across during my search, and so am wondering what information might be helpful/welcome at the beginning of her journey...
If any of you have experience with this, I'd welcome advice on how I might be able to help her, or whether I simply can't at this juncture! She knows she can call me any time to talk, and she has taken advantage of my knowledge of the IEP process and public school systems in general, however I'm wondering if I should be sending her the articles, websites, resources I find, or if that will overwhelm her. I suppose I could ask her! Perhaps I will do that, but in the mean time - those of you with experience, what, if anything, did you find most helpful in those early days of realizing your child had a diagnosis such as this?
Thanks in advance.
posted at 9/22/2011 4:50 PM EDT
Hi, Poppy, I'm so sorry for your friend and her child. That's a tough thing, indeed. I don't have experience with that particular disorder. But, I do know that no one wants articles they can easily find themselves even if you're well-meaning (and, of course, you are!). I think all you can really do is listen. Beyond that is up to a therapist to do, someone trained
in how to help professionally, and I hope she has one or gets one pronto.
As to what to actually say, your vulnerability can go a long way to reach her. I'd say something like this:
- Gosh, I know this is so not about me, but I have to admit I'm feeling at such a loss as a friend right now - I have no idea what to say or how I can help. However, I do hope you know I CARE even if I say the 'wrong thing' (which I'm totally afraid I'll do) or I don't say anything while I wait for you to come to me when you want to talk. I'm here for you, and I'm happy to listen. ...At the same time, I would like to suggest (even though it makes me uncomfortable though I'm not sure why) finding a therapist for you and your husband, or at least you if he doesn't want to go, because my first fear for you as parents is that your needs might get lost in the shuffle as all the focus goes to your dear son. Of course, if you are overwhelmed and lost, you won't be able to be there for him the way you want, and the whole experience will be that much harder for the whole family if you and your husband aren't being taken care of, too. And, I know that while all your friends are willing, we might not be as able as we'd like to attend to your emotional needs the way a therapist can, someone who will anticipate and know how to help you navigate the feelings that are common to parents going through this with their children. You will not be the first family they've counseled for this - they will know the stumbling blocks before you hit them and will be able to help you handle them in a way that I can't even though I am totally here for you."
That's probably what I'd say. I'm not saying it's the right thing to say or the only thing to say...
Bless you and your friends in this scary, overwhelming, etc. diagnosis.
posted at 9/22/2011 7:44 PM EDT
I haven't personally experienced this diagnosis for a loved one, but I'm a school counselor who often sees kids with this diagnosis. I highly recommend the Asperger's Association of New England website http://www.aane.org/.
It has some great resources on there and offers support/therapy groups for the child with the diagnosis, as well as family members.
It's so great that you want to support your friend at this time. I'm sure she's going through a period of shock and probably doesn't even know how she can best be supported. Be there to listen, check in with her often to let her know you're thinking of her. Although she can find tons
of information on the internet, you could try to gather information you think would be useful and put it in a reader-friendly format.
posted at 9/23/2011 8:04 AM EDT
poppy- ditto for the above- however, I have also found that a lot of kids with PDD don't really "fit" with the aspergers or autism crowds... in order to get the PDD diagnosis, you can't meet criteria for either aspergers or autism, which can mean that they look very different.
one thing to think about- meltdowns and inflexibility are pretty common in children with PDD. one of the most supportive things that you can do during one is ask what you can do, rather than staring or leaving the situation. I would also try to be attentive when she makes comments about your child, particularly in relation to her own.
and about the IEP- I am sure that general guidance can be very helpful- but this can be very slippery ground. DH and I both work with IEPs a lot, and we tried to be helpful to friends of ours- (1) it became obvious that we didn't see eye to eye on the kids strengths/weaknesses (2) that what we (as professionals) would recommend was different than what they (as parents) wanted.
posted at 9/23/2011 1:00 PM EDT
Thanks everyone. Kar, you make a good point about not passing along articles/sites that she could easily find herself (because I know she has googled herself almost to death on the subject).
KD - thank you for the specific recommendation. I will ask her if she's heard of it next time we speak.
Winter - I'm being very general in my advice re: the IEP. I would not make any recommendations at all, I'm just telling her what she might expect when she sits down at the table and I'm trying to help her to feel empowered to ask for what she feels her son needs, as opposed to feeling "grateful" at any small service they offer and feeling like she shouldn't rock the boat.
posted at 11/12/2011 1:25 PM EST
In Response to Re: ASD/PDD
[QUOTE]Thanks everyone. Kar, you make a good point about not passing along articles/sites that she could easily find herself (because I know she has googled herself almost to death on the subject). KD - thank you for the specific recommendation. I will ask her if she's heard of it next time we speak. Winter - I'm being very general in my advice re: the IEP. I would not make any recommendations at all, I'm just telling her what she might expect when she sits down at the table and I'm trying to help her to feel empowered to ask for what she feels her son needs, as opposed to feeling "grateful" at any small service they offer and feeling like she shouldn't rock the boat. Thanks again!
Posted by poppy609[/QUOTE]
posted at 11/12/2011 1:29 PM EST
The Lurie Center in Lexington formerly known as LADDERS is a very useful resource. Not only do they have specialist in all areas from doctors to other evaluators relating to eating issues that can be common among child with ASD/PDD-NOS diagnosis but also an entire array of MDs, PhDs, OTs, SLPs and more. They have specialist to just help navigate navigating!!!
Supporting your friend through this early time and help remembering that their child doesn't need to be 'fixed' but loved for who they are and encouraged to succeed to be the best they can be. The same we all want for any child.
posted at 11/12/2011 8:52 PM EST
As a parent whose 5 year old son has the same diagnosis, I can tell you that your compassion and desire to help mean more than you can know. One of the most important things you can do is to continue to be a loving, attentive presence in your godson's life. Sadly, we have had people in our lives that believe we are using our son's diagnosis for attention. As a result, they have refused to educate themselves and end up ignoring him. Taking the time to communicate with your godson in whatever manner is most comfortable for him, showing an interest in the activities he enjoys or even just quietly observing and noting the progress he makes (however small) will do much to support your friend. Offering the gift of your time--to help with errands, therapy appointments or childcare--is a wonderful gesture as well...it often feels as though there are never enough hours in the day! Even the time for a 15 minute walk can be what helps get her through a tough day.