Parents: Share Your Thoughts

Image courtesy Bigjom@freedigitalphotos.net
Image courtesy Bigjom@freedigitalphotos.net

Are you a parent of a child with OCD or an anxiety disorder?  I would love to hear your thoughts.  I mentioned in a previous post that a proposal I submitted to do a presentation at a national conference was accepted.  In a couple of months, I will be traveling to attend and present at that conference.  My topic is about the important role parents play as part of their child’s anxiety treatment team.  I will specifically be identifying things clinicians can do, or can encourage parents to do, that will help parents be a strong link in the treatment team for years to come.

For example, when my son was first diagnosed with OCD, his therapist suggested a couple of books for me to read.  I did so – voraciously – and they helped me to really wrap my head around his diagnosis, and to understand how to effectively support his recovery (even in situations we hadn’t discussed in treatment).

Another example comes from my experience as a clinician working with parents with anxious children.  I find that it is essential that I convey empathy for what a parent is going through.  Many parents are terrified, frustrated, confused or a plethora of other emotions when they walk through a therapist’s office door.  A parent who feels understood is going to be a much more willing and confident participant in the treatment team.

So my questions to you:  What things have you found help/helped you to feel more a part of the treatment team, or to feel more connected to what was going on in treatment?  And what helped you to feel like you were/are valuable and effective at helping your child overcome anxiety?

I will be presenting to clinicians and researchers from around the United States and Canada and I would love to incorporate the ideas of other parents into what I share.  Please put your thoughts in the comment section below.  All identities will remain confidential in my presentation.

I look forward to your thoughts!  – Angie

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13 thoughts on “Parents: Share Your Thoughts

  1. Our oldest was diagnosed with depression and anxiety a few months ago, following in her father’s footsteps. Looking back I now see the signs of both over the last few years, and though we’ve always been open with the kids (knowing their genetic predisposition for these illnesses) and discussed the importance of getting help if needed, I feel like I let her down in not picking up on it sooner.

    In her sophomore year in high school, I became concerned about her eating habits as she lost more and more weight. She didn’t listen to me, and I finally forced her to go to the doctor, with me present. Thankfully she did listen to the doc, who spoke plainly and handled the concern beautifully, and that was enough to turn her around. We came up with an eating plan, iron supplements, and follow-up blood tests, and our doc was great in making sure that the three of us were on the same page and working together. That was one of several issues that should have made me put two and two together and come up with depression/anxiety. Sigh…hindsight. -Amy

    1. Sounds like you, the doc, and your daughter made a nice team. Hindsight…yes…sigh. I think most parents have been there. There were signs that Blake had OCD for a long while before I got a clue – and then even longer before we sought help. I think that since we live in the situation, we are simply doing the best we can – and then, at some point, all the pieces fall into place in front of us. – Angie

  2. Congratulations once again on your talk, Angie. I doubt I can tell you anything you don’t already know. We did not have the greatest experiences with Dan’s providers at his residential treatment program, and I wrote a post about a year ago on what would have made it better:. Maybe that might help? http://ocdtalk.wordpress.com/2013/02/17/its-not-us/

    Of course every situation is unique, but the bottom line to me is this. Therapists are seeing our children in the worst shape of their lives. Health care providers don’t really KNOW their patients (unless you are dealing with a long-term pediatrician or other doctor). They know their DISORDER. That’s where parents can be invaluable, to give insight into what makes their children tick. So I guess the answer to your question as to what made me feel valuable during my son’s treatment would be to be listened to and taken seriously, and respected for what I had to contribute. Because while the therapist might know OCD, I know my child better than anyone, Parent’s insights need to be paid attention to. Geez, I think it’s time to write about this again so I might blog about it soon, with a link to your blog of course. :). And if you decide to use any of my input, it doesn’t have to be anonymous.

    1. Thank you, Janet. Your comments are so helpful. One of my core points in my presentation is that clinicians need to assist parents to recognize that they (the parents) are the “experts” on their child – nobody else is. My thoughts based on my own experience is that parents need to be empowered in this way. Your comments stand this idea on its head, in a sense, in that I also need o address that the clinicians need to remember that the parents are better experts on their kids and know them better than anyone else. Yes! This gives me another point to highlight! I see parents relinquish what they know to the “experts” far too often – it has to be a joint/team effort. Thank you! Thank you! – Angie

      1. Hi Angie & Janet,

        This is Prerna Martin from the Columbia University Anxiety & Mood Research Clinic. This is such an important topic, thank you so much for contributing from your own experience to this discussion! We’re actually in the midst of recording a series of videos on OCD for providers, parents, teachers and other people that are involved in a child or teenager’s OCD. I’d love to get any input you might have on some of the most important things for providers or parents to keep in mind when trying to treat OCD. I’ll definitely look through your posts as well.

        Angie – congrats on the proposal acceptance! We’ll look forward to hearing more about how the presentation goes. If you can share any materials from that, we’d love to offer that as a resource to our families as well .

        Warm regards,
        Prerna

        (Contact info: pmartin@nyspi.columbia.edu, 646-774-5793)

  3. Pingback: OCD and Family Involvement | ocdtalk

  4. I went to a pediatrician when I suspected OCD. I wanted to rule out anything else. Sadly that was a mistake. The pediatrician had no clue and was actually harmful with the OCD. She didn’t “get” it. And she pushed my loved one for answers they couldn’t give. (Can you teach the medical profession to refer to a therapist rather than pushing a child??? 😉 ) Anyhow, what helped most was to find a therapist who DID get OCD. Reading her website she explained that she worked with OCD children. That helped me to contact her. She also shared during a session that she (the therapist) struggled with OCD. I found it immensely comforting that she knew where we were coming from. She had real life empathy. I saw an adult who has made a life and that there was hope. The other thing that really helped me, as a parent, along with some books was to tell me it wasn’t my fault. There wasn’t anything “I” did or didn’t do to make my loved one like this. She really helped us to understand that OCD was a part of my loved one, but not my loved one. Does that make sense? Like someone has diabetes, but isn’t diabetes.

    I know these are rather random and not a well thought out post. Sorry. 🙂 Also being able to be in the room with my loved one. They were very young. So being in there and learning how to talk to my loved one when we weren’t in therapy was great.

    Good luck on your presentation. I hope you can give many professionals some great tools.

    1. Thank you so much! These comments are VERY helpful for me (not random at all). So, self-disclosure on the part of the therapist helped give hope, and it was so important to hear that it wasn’t your fault in any way. Also, framing OCD in terms of being a “part” of your loved one, but not the sum total of who your loved one is. Oh, there are so many great points you’ve made. Thank you! Although there won’t be pediatricians at this particular conference (most likely), I am on a mission to educate doctors, too – since they are usually the front line (the first people parents often take their children to). Thanks so much for your contribution to this!

  5. Cathy Hanson

    This is such a good question and something that I have thought quite a lot about recently. My 21 year old son was diagnosed with depression when he was 12. It was only last year, after 2.5 years of ECT treatments, that he finally received the diagnosis of OCD and anxiety disorders. I now realize that his anxiety began when he was quiet young. What is ironic about this is that we live in Ann Arbor, Michigan and have always had access to outstanding care. So, what do I suggest? I think when a child is diagnosed with depression, parents should be given information regarding anxiety disorders at the same time. Depression and anxiety so often are connected that it should be a discussion with families from the start. If an anxiety disorder is present, parents should have time in the appointment for discussion regarding family accomodation behaviour. Resource information such as books, web sites and support groups should also be provided and discussed. I know with me, there are times when the information is too much for me to take in, so having the information reinforced and discussed often would have helped. Good luck with your presentation and thank you for your work in this area.

    1. Cathy, Thank you so much for your input. It is incredibly valuable to me. I think that it is very insightful to consider discussing depression and anxiety together. And good point about discussing the information often – I know that I’ve really only learned as much as I have by reading and discussing over and over (and there is still always something new that I learn!). Wishing the best to you and your son. Thank you once again. -Angie

    1. Okay, this is sooooo.. funny, but I almost put another comment on your blog about how much I like Dr. Dan Peter’s work, too (because I’d noticed that you had posted about him in the past). I’ve corresponded with him, watched some of his webinars and I read his blog posts, too, sometimes. A great resource!

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