On Therapy

One of Becca's old therapists is giving a lecture on working with pediatric patients and their families, and she asked me if there was anything I'd like to pass on to a group of aspiring therapists.  Apparently, I had a lot to say, so I thought I'd share it with you.  Preemie/special needs parents, what else do you have to add?

So here's my advice to therapists, which is also fairly applicable to nurses, now that I think about it.

Balance the professional and the personal.  We've had some sessions in which I've felt like the therapist and I interacted more than Becca and the therapist.  But worse was the therapist we had that was SO "professional" that it was completely isolating.  I didn't feel like I was involved in her therapy at all.  I sometimes wondered if I should just wait in the lobby - Lord knows I could have used some downtime for myself and a book!  I know absolutely nothing personal about that therapist to this day.  (And if I'm completely honest, I'll admit that I'm petty enough that it at times affected my implementation of our home therapy program.)  Being the parent of a preemie is SO SO SO isolating.  Remember from September through March (or whatever RSV season is in your area), family, doctors, nurses and therapists -- and maybe a few close friends -- are essentially the only people we see and interact with on a regular basis. Seriously.  So be friendly with us, even if you can't/don't want to really be friends with us. You are our support system.  I mean, I don't need to know about the fight you had with your boyfriend last night, but I love knowing that you've got, say, a daughter the same age as Becca or a kid in college or a pair of pugs that are the light of your life.  Give me something to humanize you and make me feel like we are partners in our efforts.  (Note: if you do have a child about my child's age, DO NOT compare their abilities.  We do that enough already and don't need your help in that area.)

Know that therapy fatigue is real.  Most of these kids will be in multiple therapies each week, each with a home therapy program, likely alongside lots of medical needs.  Let us know what we need to be doing, but prioritize.  We can probably only manage about 2 assignments a weeks.  If it's appropriate, give us permission to sit in the lobby occasionally.  Most likely we'll want to be in the sessions, but every now and then a break is an amazing treat.

Work together with us on goals.  Don't just make them up on your own.  At least run them by us and see what our priorities are.  With all due respect, I know you are a professional, but in the grand scheme of things, what matters are MY goals for my child (and if they are old enough, their own goals), not your goals.  Therapists come and go, often frequently, but we're the ones raising this child.  Provide a written copy of the goals (whether it's hard copy or e-mail) so that we can remind ourselves of them and share them with other parents, caregivers, etc.  

Help us work with the doctors.  Sometimes you are able to get access to them that we are not able to get on our own.  Sometimes you can express our concerns to them and they will be received differently (and taken more seriously) if they come from you.  However, remember that we are the experts on our children, not the doctors. 

I can't believe I have to mention this, but it has happened on more than one occasion: if my child makes some kind of artwork/picture/design/anything on paper during the session, DO NOT THROW IT AWAY IN FRONT OF HER.  Even if it's a mess of shaving cream on construction paper to you, to them it's a work of art that they are proud of.  Set it aside, and when I don't take it with me, toss it - but not in front of the kiddo.  They notice these things, even at age 2.  Becca even requests that her pictures goes on the wall (we have a special frame) or on the fridge.  Sometimes she puts them up herself.  She knows that what you do with a picture is a commentary on it.  So respect her efforts and her feelings, please.

And in general, if we are a little high maintenance, a little (or a lot) scattered, not always punctual, and/or just generally nutso, give us some grace.  Unless you have been in our shoes, you can't understand the scars that our journey has left and the stress that we continue to be under. We have spent too much time fighting for our children's lives for us to be normal, and with therapy, we're still fighting for our children's quality of life, even if they aren't in physical danger anymore.  A pattern of missed sessions and non-compliance is one thing, but otherwise, a little kindness and understanding can go a long way with us. And we will love you forever for it.