I decided to start this series for several reasons.
First, we spend our entire Thursday in “therapy.” Case goes to neurologic music therapy in the morning and then from there, we go to his infusion at the hospital. Sometimes in between, we go to an incredible park in downtown Nashville known as Dragon Park for the immense mosaic tile dragon coming out of the ground. It has a play structure built with kids with special needs in mind. Of course, we do lots of fun physical therapy stuff there like climbing, walking on balance beam structures, etc.
Second, I cannot over state the importance of therapies, both traditional and nontraditional, for MPS kids and other children with special needs. Unfortunately, MPS parents are often told by early intervention programs or school systems (or even doctors) that their child is not yet “delayed enough” to receive services at all or an adequate level of services. This is incredibly unfortunate, harmful to the child overall, and legally incorrect (we’ll cover the legal aspects of early intervention and IEPs in other posts). With any understanding of a progressively degenerative disease, one would conclude that a high level of services initially, with the ability to scale back, is the most beneficial to preserve skills.
I intend for Therapy Thursday to (1) highlight different specific therapies for our kids – both traditional, like successful physical therapy methods, and nontraditional, like the subject of today’s post, neurologic music therapy, and (2) review different pieces of therapy equipment, like weighted garments and other things we can use at home to support our kids.
For Therapy Thursday to be the most effective for families reading this site, please comment to add any additional insights or opinions you have about the post and any experience you have had, good or bad, with that therapy.
Neurologic Music Therapy
So today, I thought I’d highlight the therapy that Case is currently receiving as I type this post. We are at a clinic in Franklin, TN called Pediatric Therapies and Case is receiving neurologic music therapy (NMT) from Gloria Isaacks who is both a board certified neurologic music therapist as well as an occupational therapist. Case has also received music therapy at Vanderbilt Children’s Hospital in connection with his infusions there.
NMT is is defined as the therapeutic application of music to cognitive, sensory, and motor function due to neurologic disease of the human nervous system. NMT is research-based and its treatment techniques are based on the scientific knowledge in music perception and production and the effects thereof on nonmusical brain and behavior functions. Populations served by NMTs include, but are not limited to: stroke, traumatic brain injury, Parkinson’s and Huntington’s disease, cerebral palsy, Alzheimer’s disease, autism, and other neurological diseases affecting cognition, movement, and communication (e.g., MS, Muscular Dystrophy, etc). A good overview of some of the different techniques of NMT can be downloaded here and of course, Wikipedia also provides a broad explanation of music therapy generally and NMT in particular.
While it is not specific to NMT as a methodology, the American Music Therapy Association (www.musictherapy.org) has a wealth of information to educate you or your child’s team about music therapy. You can also read additional scholarly articles describing the use of NMT and music therapy in general.
Because MPS is a degenerative brain condition, affecting the brain in unique ways may allow us to preserve brain function for as long as possible. Repetition of skills in school and other therapies, supported by using NMT techniques to work on those skills as well, may offer that additional degree of affect on a child’s brain and may help in preservation of skills while new treatments are being tested and approved (like the intrathecal trials).
However, because MPS is so rare and I have not heard of many children using NMT, it is difficult to assess whether it truly makes a difference. My logic and interaction with Case says that it does, at least for him. I’ve also watched many sessions through the blackout window and it helps me discover new ways to reach him.
NMT is not generally covered by insurance, so there are several options for paying for it. It generally runs between $50-$100 per 1 hour session. First, private payment of course is acceptable and if you have the money for that, yeah!
Second, the school system is another source of potential funding. Although some school districts may not know this, music therapy has been ruled by the federal Office of Special Education to be a related service under IDEA. Thus, if your child meets the criteria, is just like asking for a more traditional therapy, like physical therapy. Some schools offer music therapy as part of their programs or you can fight for it to be included in your child’s IEP. To tell you how difficult that might be (not to discourage you!), we engaged in that battle but lost even though we had current private therapists on record stating that Case was the prime candidate for using NMT and Case’s NMT evaluation showed the same thing. We could have fought and taken it to due process, but the issue was that Case was still making progress under traditional therapies and the school said that he was receiving the appropriate education under IDEA, the special education law. Our issue was that given the degenerative nature of his condition, we did not want to wait until he was losing ground, we needed to maximize his learning NOW to retain as much as possible and with an eye on the clinical trial to hopefully regain skills.
Third, like private funding, another source is fundraising, the option we pursued. We were incredibly blessed to have friends and family support us by both holding their own fundraisers for Case and by working with us to find other ways to raise money. We will talk about fundraising and catastrophic illness/special needs accounts in another post as well, but suffice it to say, monies raised for Case pay for his NMT since it was specifically prescribed by his physician.
NMT provides opportunities to work on things at home, which is great. Since Case has always been musically motivated and enjoys music so much, we have lots of instruments and bought some additional specific ones when starting NMT. When you understand the premise of NMT and several different methods, you start to be able see many ways you can implement it.
Specifically, we use a xylophone, desk bells, and maracas to work on colors, 2-step directions (hit the green bell, then the red bell), crossing the midline (crossing chest to reach instruments, shaking both maracas with crossed arms).
We use clapping and singing to establish rhythm for walking slowly or doing other tasks at a deliberate pace. We also use songs to sequence events (putting on his shoes) or to create reminders (we have a song about keeping his seatbelt buckled).
The goal of music therapy is not to make your child musical, to learn songs (as a goal in itself), learn instruments, etc., it is to use their unique response to music to help learn or retain other skills and meet other goals, like IEP goals. Case works on speech, occupational therapy, safety, and behavioral goals in NMT. There are no “musical” goals.
Also, NMT is different than music therapy alone. Those trained in NMT have additional training in methods to reach brain processes in different ways. Some preschools or schools may have music therapists, but you must be discerning and evaluate their training, methods, and style to discern whether this will provide any true additional benefit to your child’s therapy regimen or whether outside private therapy is warranted.
NMT and music therapy generally are also different than Therapeutic Listening Therapy. I’ve found that sometimes schools view them interchangeably and often advocate for Listening Therapy over music therapy not, it appears, because they have any particular thoughts or evidence that it might work better for a particular child, but because they already have the supplies for Listening Therapy and so it may not cost them anything more. On the other hand, putting NMT in a child’s IEP or offering it generally at the school may involve significant additional expense. That is not to say that I have anything against Therapeutic Listening – we have never tried it. Case distinctly responds to live music and instruments, so it appeared that he was a prime candidate for music therapy with a certified therapist.
As with any therapist, it is important that the NMT understand your child’s condition (ideally, that they have experience with another child with that condition, although with MPS, that is unlikely) so they can understand why your child has difficulty with certain skills and create their therapy plan accordingly.
Some children will not benefit from NMT. Either the do not respond uniquely to music as a medium (although they may even enjoy it) or it otherwise is just not appropriate for them. Some kids are already so “therapied” with many doctor and therapy appointments that adding NMT will not make sense in the long run. For us, NMT is currently Case’s only therapy appointment outside of school and it has shown such benefits, especially with homework, that we feel it is worth the extra time for him and us.
I am incredibly thankful to have a solid NMT in the area who is now an occupational therapist as well. At some point, I think Case could be at a level where we phase out the formal therapy and move to the homework that we do, but for now, music is so integral to his personality and the ability to get and give instant feedback with the therapist (as opposed to notes home from school therapists) is so important with the steady changes from the clinical trial, that we continue with a therapy that works for Case.