The following article appeared in the Fall 2008 edition of Parent to Parent, a quarterly publication of the Kentucky School for the Blind) and is reprinted with permission.
If you had asked me ten years ago about music therapy, I’m sure I couldn’t have given you a good answer. Actually, there’s a lot that I couldn’t have told you about. In 2001, my husband and I entered into a whole new world. That’s the year our son Theo was born. They say that having a child is a life altering event. Boy, they weren’t lying. Let me tell you a little about our experiences so you know where my insight comes from. With any luck, some of your questions about music therapy, therapeutic listening therapy, music instruction and their differences will be answered.
In November 2001, Theo was born 18 weeks early at 22 weeks 5 days gestation. He weighed in at 1.21 lbs. and was 11.5 inches long. This begins the journey into many new, exciting and at the same time terrifying worlds. Theo stayed in the Neonatal Intensive Care Unit (NICU) in Louisville for 18 weeks. About a month into his stay, he contracted MRSA pneumonia. Most of the medical personnel did not expect him to make it through the night. He made it through the night and to this day still fights pneumonia at times. He requires daily breathing treatments and we are ever watchful for signs of upper respiratory illness. He is improving all the time.
About 2 ½ months into his NICU stay, Theo had frequent eye exams to watch for Retinopathy of Prematurity (ROP). By three months into the stay, he had a round of laser surgery in both eyes. A quick footnote! ROP occurs when the blood vessels in the retina do not form correctly. Instead of forming in a line, they start forming on top of each other, which results in a rupture and eventually will cause torn and/or detached retinas. The laser surgery is done to break down the vessel buildup, hoping that the vessels will start to form correctly.
By the end of the NICU stay, Theo had received three rounds of laser surgery in both eyes and was still having problems. As we were planning to bring him home, the eye doctor checked his eyes again and found a tear in the retina of the left eye which meant surgery while he was on a vent and the possibility of an increased stay in the NICU. As it turned out, Theo went through the surgery like a little trooper and came right off the vent. A couple of days later, he was finally home and then the playing field changed.
At this stage, we knew Theo was visually impaired but we had no way of knowing to what degree. Before leaving the NICU, we were given the Visually Impaired Preschool Services (VIPS) telephone number 1-888-636-8477 and web address http://www.vips.org. I was told these folks were the “GO TO” people for visually impaired kids from birth to age five. They were not lying! Most of the VIPS staff have kids or other family members that are visually impaired. They can help with just about any question you have pertaining to vision impairment and how to teach your child to be all that they can be. They were as much an asset to me as they were to Theo! They introduced us to music therapy at about the same time Theo started preschool. They did music therapy as a group session and he really enjoyed those times.
Home from the NICU, we started in Kentucky’s First Steps program. This is where Theo started therapy and where my husband and I begin to learn what teaching techniques work best with our son. We learned about his strengths and we learned early about his struggles. Those things still hold true today. He will always be stronger at getting from point A to point B than he’ll be with feeding and talking. After his second birthday a First Steps Occupational Therapist introduced us to the world of therapeutic listening therapy. We have used two different programs. The first and probably the one Theo prefers, because it is more kid friendly, is the Vital Sounds program through Vital Links (http://www.vitalinks.net). The other one we used while he was in preschool and had good response from was The Listening Program through Advanced Brain Technologies (http://www.thelisteningprogram.com). This is a CD program that a person listens to through specialized headphones. The music tends to be classical and is modified or modulated to work on things like spatial awareness, body awareness, attention and focus, sensitivities to sounds and textures, etc.
Theo is a much more focused and loveable child when he’s on a program. He moves better and generally feels better. He sleeps better and it is a more restful sleep. About four weeks of being off of a program, I can tell he is ready to go back on one. If you’ve ever had a cat in the house that sees something outside and it starts running from room to room like it’s possessed, then you can appreciate this little glimpse into Theo off of a program. Around 7 PM every night, Theo would start running from room to room laughing hysterically. Sometimes it would take hours to calm him down. I tried calming music, swinging, weighted pressure vests, holding him in a “big mommy hug” and nothing works like his listening program. He EXPECTS to do his listening. It’s as if he knows he needs it to keep him glued together. Now those of you who don’t like to stay on a schedule, beware. These programs are a minimum of eight weeks of commitment, listening twice a day for 20 minutes each time. The specialized headphones cost around $150. These programs must be organized through a therapist that has training in the program. Having said that, I would NOT go very long without one for Theo.
Once Theo aged out of First Steps, he moved into the preschool arena. What a constant challenge. We’ve had some very good experiences and some very bad ones. Theo really was not ready for the preschool world. He was truly terrified. Now, we met some great therapists and the teachers tried hard. Theo is a hard kiddo to teach at times. It takes a special way of teaching. We had basically four preschool teachers in the nearly three years he was there. His last teacher had the most experience dealing with kids like Theo. Now, I know you’re thinking, she keeps referring to him like he’s quite different from other visually impaired kids. Well, I say it like that because we found out part of the problems we were dealing with were in fact due to his lack of vision, but so much more of the problem was due to his being autistic. So we now have a double whammy to figure out and overcome.
Let me go back to our first full year of preschool. This is the year we got our first taste of one-on-one music therapy. Boy, did he love it and he started picking up the things that he needed. This is a good place to give a little info on music therapy. This therapy takes the information being taught in the classroom, the skills being taught in other therapies, molds it together and puts it to music with the child learning, “I can do this.”
Theo picked up new skills all the time. He learned how to take turns and how to follow directions. He started making new sounds and putting them to music. He was exposed to many kinds of musical instruments by the therapist. Some of these instruments he loved, some he hated, but the experience and exposure was priceless. It opened his world in ways that I could not have opened for him. He had two full years of music therapy through his preschool and there were times it was the only bright spot.
Preschool was hard on Theo at times. He tended to be over stimulated from being around the other kids and all their noise. Theo still struggles in a room full of people. Now, he had his good times and his bad times. Lorinda Jones is the Music Therapist that worked with Theo first. If you are interested in learning more about this therapy, she can refer you to someone in your area. Her email address is losnotes@alltel.net. Some school systems receive grants to help pay for music therapy through the school year. We put aside money from our tax refund to pay for Theo’s music therapy through the summer months.
Now, here are a few things you should know! Make sure your Music Therapist is trained in music therapy. They have to know how to make everything come together so the child can get the most therapeutic experience. It’s more than just playing music. It’s more than listening to music. It is bringing all of these worlds together in terms the child can understand. Every blind child I’ve ever met loves music and understands music and that is why it is such a great vehicle to teach the blind, multiple disabled child.
Once Theo aged out of the preschool program, he started attending the Kentucky School for the Blind (KSB). Here he has been introduced to music instruction. Theo does enjoy his violin lessons but he knows they are very different than his music therapy. Music instruction concentrates on one instrument and involves following the instructions from the instructor. Like I said, he does enjoy it but knows it’s not the same. Do I have an opinion on which one is better? NO! They all have their place. For a kiddo like Theo he thrives on all of them. Can he live with out them? Yes, but with out them he’s not all that he can be. The hardest thing for any parent of a child like Theo is in weighing out which is most important and how to make it all come together. With any luck, you will find yourself a great team of people to help you along the way. I know that we have been blessed. Theo is blessed for having learned from the listening programs. Overall, Theo is a happy boy!
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