Years ago, my family utilized occupational therapists (OTs) for one of my children. At that time, we had fantastic luck as both of the therapists our insurance covered were wonderful, patient, and good listeners. I assumed all OTs were trained to be this way.
Recently we began OT for another of my children. It has been extremely difficult to find someone who can accept the limitations and stressors my sweet kid has right now. I had no idea that others struggled with this issue, too, until I asked in a local mom group. Turns out that many, many people have difficulty finding quality OTs as well as quality PTs (physical therapists) in my area. What I am hearing from others is that the therapists know their field quite well. However, many do not listen to clients and families, so they are unable to learn how best to serve the client.
Based on my experiences and those replayed to me via chat and in-person, I ended up writing this post. I hope it helps give perspective. Families do want to work with therapists, but parents and children become frustrated after going down the list and trying multiple providers, then having OTs or PTs repeatedly fail their kids.
Noncompliance does not equal a naughty child.
When a child has special needs, your family will come into contact with many healthcare professionals who want to help. They are often experts in their field and have an incredible amount of experience. Ready for the “but”?
They may be experts on a topic or diagnosis, BUT they are NOT experts on your child. One huge issue that comes up time and again is the lack of understanding of anxiety. Many children deal with mutism, or selective mutism, due to their anxiety because they literally cannot make themselves speak when extremely anxious or having a panic attack. Another term to know about is Pathological Demand Avoidance (also known as PDA). PDA is, in essence, anxiety. But this kind of anxiety is extreme. A child may lash out, become mute, ignore, or even run away from a situation that gives them anxiety. Many children, mine included, explain this feeling as a growing pressure that escalates with demands for compliance. This creates an extreme amount of stress and anxiety.
The problem is that these behaviors look like naughty behavior when they are actually behavior borne from anxiety attacks and panic. Sadly, it may be difficult to tell the difference between naughty behavior and panicked behavior when they present so similarly and both mean noncompliance and sometimes even unsafe behaviors. The problem that many families run into is that medical professionals, therapists, and teachers often do not realize that what they assume to be a naughty child is actually a child struggling with anxiety or PDA. It is important for therapists and other professionals to listen to parents, children. Don’t take these behaviors personally or as a refusal to cooperate. Instead, take time to grow a rapport with the child, then things go much more smoothly.
SPD, PDA, and anxiety may prevent touch.
Sometimes touch is seen as part of a physical or occupational therapy session. This is understandable as a therapist may need to show or help a client do something. Some therapists are very thoughtful of boundaries, but others are so focused on meeting goals as fast as possible, that they forget that the clients have boundaries which should be respected in order to build a positive bond.
Children who are sensory defensive will not likely want to be touched. They may have a family member who they tolerate if they need help with writing or buttoning pants. Understanding this is a huge help and knowing when not to push an activity can help build bonds between therapist and client. In short, consent matters. As my child said after a negative therapist appointment, “I am the boss of my own body, not you or anyone else.”
There is plenty of time.
Much of therapy is goal-driven in that there is an evaluation, goals are written, then insurance companies and parents often want to see that progress is being made toward those goals. During the yearly re-evaluation, progress is supposed to be shown. The idea is that, eventually, the client will no longer need the occupational or physical therapy service. However, this is not realistic in all cases.
The problem is that a goal-driven therapy model often does not respect the pace at which a child with special needs can handle demands, changes, and activities. The adults may forget that rapport takes time and working as a team means getting to know the client even if it takes months or years. One of my children recently said, “I don’t think the OT knows me at all. If she did, she’d know not to put pressure on me. It makes me have anxiety and then I can’t talk.” A child having an anxiety attack because a therapist did not take the time to find out that child’s triggers is not going to be successful with the child. Patience is key here. Forcing things won’t help. Sometimes slow and steady is the way to win the race. Yes, even if moving at a tortoise’s pace.
My family will stick up for me.
There is a saying, I’m not sure who coined it, that says something like, “A parent is the expert regarding their child.” I agree. Loving, invested parents ARE experts. They are experts in the child’s special needs, likes, dislikes, and behavior patterns.
If a parent is telling you not to do something, then immediately stop. The same goes for the child telling you no with either behaviors or words. Just as a parent is an expert, so is the child. Your client may have difficulty explaining the issues but learning those behavior patterns and understanding how a child reacts when upset versus happy is a HUGELY important skill for anyone working with clients who are children or who are nonverbal. “Thanks, mom!” That’s what my child said after I had to fire a therapist who thought they knew better than my child and I regarding the child’s needs. The therapist knew us all of 90 minutes total, yet thought they knew more about the child’s needs and caused a panic attack and subsequent regression in the child.
Here’s the thing. An OT or PT may know a diagnosis. They may be experts in their field. That’s wonderful! But they are not experts on each client until they take the time to get to know the client.
This is an ongoing process and forcing a relationship, creating an adversarial process by being authoritarian, and pushing things that trigger a client are never going to help establish rapport. Parents will tell you to stop. Parents will fire you if they see you refuse to listen. The client’s family WILL stick up for them. We are, after all, their best advocates and don’t take that job lightly.
As one of my children recently said, “I want them to understand me. Being pushy doesn’t help.” As adults we may get wrapped up in goals and our agenda. But that’s not important. It is important to support clients and clients’ families by listening, observing, and putting the client first. Work as a team to find out how to help. Make goals together. Listen, observe, and use patience. As I mentioned above, slow and steady wins the race.
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