Looking back I can see that I made several mistakes when we began our journey into therapy-land.
First, I assumed that therapy was therapy and that all therapists were similar enough. Just like you would expect that even a semi-competent doctor could treat a common malady, I expected that a pediatric therapist could help with the issues that we were facing, issues that are uncommon for the general population but very common in the special needs community. I learned that this was not the case when our first feeding therapist told me that "we just have to hope that she doesn't develop an oral aversion" whereas our second feeding therapist gave me specific ideas to help with oral sensory development.
Second, I bought into the idea that more therapy = better outcome. I bought into the idea that therapy could help "fix" whatever was wrong. What's worse is that I bought into the idea that Juliana just needed to suffer through it and get with the program. I listened to outsiders instead of listening to my own intuition. That was wrong. While I try not to overestimate the power of intuition I have become wary of completely disregarding it.
Third, I underestimated the importance of a therapist who is knowledgeable about sensory processing and integration. Granted, we only received this diagnosis relatively recently. However I thought that any pediatric therapist of a reasonable repute would be somewhat knowledgeable when it came to sensory issues. But alas, this is not the case. Based on my experience the opposite seems to be true; our former therapists didn't have a clue when it came to sensory integration. The word "sensory" was never even mentioned. These former therapists would simply try to "push through" therapy sessions with Juliana. She didn't like it, but we had to get it done, so we would just keep doing it and hope that she would get over it.
I regret handing over my baby to people who often didn't know what they were doing. Sometimes I stopped the sessions when the crying was too much but sometimes I didn't. I was always present for her and I always let her know that, but it rarely mattered. What she wanted was to be out of the therapist's arms and into mine. It usually hurt to watch and as time went on and therapy sessions did not improve, I began to really wonder if we were harming her instead of helping her. I agonized over the right course of action. She did have extreme separation anxiety her first year of life and she wouldn't even let David hold her if I was in her line of vision. Is it a coincidence that this anxiety is markedly improved since we have fired all of our former therapists?
After meeting with our new OT several months ago I realized that our entire therapy team needed an overhaul. We discontinued OT through Early Intervention and we now see a music therapist instead. This has been fun for both of the kids. We discontinued seeing our old PT and now see a new PT that understands sensory integration. We discontinued speech but will probably pick it back up a later date. The result of these changes have been phenomenal. Juliana now really enjoys her therapy sessions! She seems to be benefiting from them. I really enjoy watching her have fun. Because she is having fun and not distressed, I am able to pay attention to Calvin during this time. The time requirements of therapy seem much more manageable now as well. The PT and OT can combine their sessions so we are out of the house for appointments only twice a week. The music therapy takes place at home.
These experiences have helped me develop my own criteria for therapy:
- It should be fun and games. Would other kids want to join in on the therapy session? These days Calvin always wants to play with Juliana and her therapists - not so much the case before. I think that learning happens when kids are having fun and not when they are miserable or suffering.
- It should be optimistic and upbeat. The OT and PT that we now see are so optimistic. I never realized before that this optimism was lacking from therapy. For instance a previous therapist might have made a comment about how Juliana was at a six-month skill level even though she was twelve-months old. This kind of commentary is unnecessary and unhelpful. Our new therapists don't speak this kind of language. We talk about where she is and not where she isn't. When the OT recently told us that Juliana was mostly at age-level on a social, emotional and cognitive level we were over the moon! Never mind that her gross motor skills are way behind.
- There should be hugs and kisses. The therapist should kiss your child. Our new therapists give hugs and kisses and seem to really enjoy working with Juliana. I hear them telling kids regularly "I love you." This really means a lot to me. I like that the kids are seen as real people with real needs and real feelings and not just as an object that needs to be fixed or worked on.
- Knowledge, passion, but most importantly... a gift. A good therapist has more than just knowledge; she has a gift for helping others. Some people have this and some don't. Looking back now I believe that this is something that can be assessed after just one visit. It is one of those things that you just know.
- I'm the mom, and I know best. If you even insinuate that this is not the case? You're fired. I don't want to be pushed or guilted into doing something that I know is not in Juliana's best interest.
- We're a family first. I struggled for a long time with trying to balance the very different needs of my children. I want to work with people who understand that we need to be an integrated family and not a family that spends all of our time doing therapy. At our first visit with our new OT she had me in tears when she spoke about how both of my kids had needs. Of all the doctors and therapists that we've seen, she was the first person to acknowledge the sibling issue.
It took me a year to develop these standards. On one hand I wish that I had known this from our first day of therapy but on the other hand I'm just glad that I figured it out at all. In Disability Is Natural author Kathie Snow discusses her interviews of adults with developmental disabilities. She found that very often these people had painful memories of therapy; memories of strangers touching them and moving them and forcing uncomfortable experiences, all while their parents stood by and let it happen. Ouch. In our fervent desire to help our children, we subject them to things that we would never do to children without disabilities.
Ultimately I plan to quit therapy altogether although this idea seems overly ambitious, crazy and a little sacrilegious. We're not at a point where I feel that this is in Juliana's best interest but I am hoping that we can reach this point within a year. I am still learning a lot from our therapists and I feel certain that Juliana is still benefiting. However as time goes on I am learning more and more ways to bypass therapy altogether, thereby helping to insure a normal childhood for both of my kids and a normal family life for all of us.