The Endless List of Therapies
When my son Declan was really young, before I had truly learned that I couldn’t control the course of his disease, I dragged that kid to every kind of therapy I could get him into. I bought into the hype.
Early intervention! No child left behind! You can fix it if you can just get him enough help!
While no therapy program actually promises to ‘fix’ your child, that’s what I heard. It felt like if I could just find the right combination of therapies, and get him enough of that therapy, he could catch up. He could be “normal”.
I think this instinct and urge is normal, and I see it all the time in the new parents of children like Declan. We want to help. We want to believe we have control. We don’t want to watch our children struggle and suffer. So we do anything and everything we can to try to fix it.
And none of it worked. At least not until I reset my expectations and came to terms with the fact that none of these things were going to change one core fact: Declan would do things on his own timeline. If and when he was ready. And I could support him getting there, but I couldn’t force it and I couldn’t control it. And once I accepted that, I realized that therapy did exactly what it was supposed to do. It did work. It met him where he was and supported him in his journey.
When I finally accepted this — that I couldn’t control Declan’s progress — we were all so much happier. Because when I accepted this, I also learned to give him, and all of us, space and grace. I slowed down. I started picking and choosing between therapies instead of trying to drag him to every single one I could find. I chose the one(s) that matched the area he was needing the most support with at the time and put the others on pause. And we all were better off because of it.
That said, there are a lot of different therapies and they can each be extremely helpful when used appropriately, so I’m listing them here, along with some information about what they are and when we found them to be useful or not, and why.
· Physical Therapy: PT helps with physical function, mobility, and strength. Think running, jumping, bending. Or for young toddlers or babies — crawling, walking, sitting up, etc. We found PT to be extremely helpful when Declan was very young and figuring out how to use his body. He struggled to learn to sit up on his own — both the transition to sitting and then sitting unassisted. He struggled with standing, walking, everything. PT was the single most important and helpful therapy when he was a baby and toddler. But once he got to the point where he could walk on his own, PT just wasn’t that helpful anymore. For him at least.
· Occupational Therapy: OT helps people engage in occupations by enhancing their ability to perform daily tasks. I think of it this way — If physical therapy is more about gross motor, Occupational Therapy is more about fine motor. Think tying your shoes, writing, using a fork, getting dressed. It also helps with sensory processing and routines that make independence possible. This became more important for Declan as he got older and started trying to do some of these things. When he was a tiny baby, it didn’t help as much. Then for a while, OT & PT were his primary therapies. Because of Declan’s fine motor issues and how much they impacted him, OT was probably the most consistent therapy throughout his life.
· Speech Therapy: There are actually multiple types of speech therapy, and unfortunately, insurance categorizes them similarly and so you often can’t get both at the same time anyways. That really bugged me when I was trying to cram as many therapies as possible into Declan’s life. But once I stopped doing that, I no longer cared. It’s good to know though.
o The first is plain ‘ol speech therapy. The therapist works with you to form words and sounds and get past lisps or other speech impediments. Sometimes those are driven by cognitive issues, sometimes by physical issues.
o Also done by the general speech therapist is ‘communication’ therapy. They will work on helping the patient to understand how and when to use certain words, like assigning words to feelings, or other comprehension.
o Devices - Sometimes the speech therapist will also help with other forms of communication. If a patient cant speak, but understands words, there are communication devices available that the therapist can help order, set up, manage, and teach to the patient.
o Feeding Therapy: another form of speech therapy (although occasionally done by OT’s), because it uses a lot of the same muscles and skills as speech, there are speech therapists who can also work on feeding. This can mean helping people get past oral aversions, or developing the muscles and skills needed to manage food and swallow.
o Vital Stim Therapy: a subset of a subset - Vital Stim is sometimes done by feeding therapists, who are usually a subset of speech. This is hyper specialized, so finding a speech therapist who can do this is often a challenge. And the evidence on how much or if it works is mixed. The general idea though is that the therapist will use electrical current to stimulate the muscles needed for swallowing. Done while the patient is actively attempting to swallow, the idea is that by triggering the muscle activation, the muscle can be strengthened. Vital stim is a fascinating idea, and makes a lot of sense, but whether or not it works for the child often depends on what is causing the weakness in the first place, and how bad the issue is. It’s an intense and time-consuming therapy. Protocols and prescriptions vary, but it usually means 30 to 60 minute sessions multiple times a week for weeks or months. Vital stim didn’t help Declan, but I dont regret trying that one. It was a lot of work to get him to all of the appointments, but I’m glad we at least tried.
· Music Therapy: I wish we had started this one sooner. This was especially effective because of how much Declan loved music. Music therapy is kind of an umbrella therapy. A skilled therapist can use music to address PT, OT, or ST needs. For Declan at least, I witnessed them using songs to motivate him to work on certain vocalizations that he struggled with and otherwise wasn’t interested in working on, or motor skills that the music called for. I dont proclaim to fully understand all of the ways that music therapy can help. But I was shocked at how beneficial it actually was. And even better, they came to us! (Not all programs come to the home. If that’s something that helps you too, then you’ll have to filter out the programs that require you to go to them.) But just as importantly, Declan absolutely loved music therapy. He looked forward to it every week. He couldn’t participate in a lot of the extra curriculars that his brother could. So this was one of his.
· Play Therapy: This is one that we have experience with through Declan’s twin instead of Declan. Play is the language of children, and they often don’t have the maturity or vocabulary to talk through things. But they show it through play and can absorb messages through play. I’ll be honest here, at first I was super skeptical. How was playing games going to help him? But Nash’s therapist has been amazing, and I’ve seen real progress that I am confident ties to his work with her. When I check in with her, she has as good of a read on where he’s at emotionally after one 45-minute session as I do after a week at home. And he comes out of his sessions feeling and behaving more regulated and calm. For any child who has things to work through; divorce of parents, adding a new sibling to the family, being a sibling of a medically complex child, or losing a sibling, I’m now a big believer that play therapy can help. And if it isn’t a fit, find a different therapist. This is one of the best things I’ve ever done for my son.
· Equestrian Therapy: We never did this one, but it was on my list of things to try. It is supposed to help with emotional and psychological regulation, and benefit people with disabilities or mental health issues.
· Water Therapy: We also didn’t get to this one because Declan had a trach for most of his life, and water + trachs don’t mix. But I was planning to look into it more once Declan’s trach stoma had healed and he could start learning to swim. Water therapy is physical therapy in a pool — great for strength, balance, mobility, and sometimes pain management.
I’m sure there are others that I don’t know about. Each of these therapies can be super helpful in their own way. My hope for you is that you will pick and choose. You can start and stop these at any point. Kids fatigue and get tired of working in one lane for too long. Keeping things fresh for them will help make whatever therapy or therapies you have them in more effective, and will help keep things manageable. I hope you take the time to enjoy yourself and your child. Let ‘good enough’ be a valid plan.
