Feb 27, 2009

Mainstreaming your child with a cochlear implant

As part of our blog site, the editorial team decided from time to time we would pick a topic of interest from the week on the discussion forum and discuss it here.

One of the major topics this week started off with a parent asking what other parents were doing with regards to their child with a cochlear implant in the mainstream setting - did the child have an aide working with them, or were they mainstreamed without any additional support?

A range of responses ensued, further highlighting other issues around mainstream settings.

Some students were mainstreamed with a school aide supporting them directly in the classroom. Other students were supported by a Teacher of the Deaf (TOD) who would visit the school and withdraw the child from the classroom to work with them one to one. In some instances the TOD may work in the class with the students.

For those that had an aide, there were varying amounts of time, some for a certain number of hours a week, and in some instances where a child is using ASL, they may use a combination of an interpreter for some lessons, and then an in class aide for those lessons in which the teacher is fluent in ASL. Some parents described having the aide in the classroom for some of the time as a way of improving the student to teacher ratio rather than using it for direct one to one time. Still other students spend time in the school "resource room".

When parents request an aide for their child as part of the Individual Education Plan (IEP) process, there are some things to be aware of. There are many very good teacher aides however the vast majority offered by schools are often untrained and inexperienced with working with a child with a hearing loss. School districts save money by hiring someone of a lower pay scale. That said there are certainly some outstanding aides, so don't dismiss the idea outright. Perhaps the issue that maybe isn't discussed often enough is "what is it that the aide is supposed to be doing with the child?" Is the aide going to spend time withdrawing the child one to one to teach the child unknown vocab, pre-teaching concepts? Is the aide going sit right alongside the child and even turn his/her page for them? (Don't laugh too loud, it has happened!!) Where the role of the aide is undefined, there is a minefield of potential problems. If the aide does not have clear direction, then they may feel they need to "do everything" for your child to justify their presence. This does not sit well when we are trying to raise independent children with a capacity to self-advocate. However if the aide is told to simply "shadow" the student and only intervene if necessary, then the aide will be comfortable sitting back and allowing the child to try, since they are directly following their role as defined in the IEP.

By and large school resource rooms should be for what we call curriculum support. A place where the staff know the school, know the program and can help the child with some additional time and support to reinforce concepts taught in the classroom. They may also even pre-teach some content so the child knows what is happening when a new topic is started in the class group. School teachers do not have the specialist training in deaf education that TODs have, and as such it is unfair to expect them to fulfil a role that expects that of them. TODs have an understanding of the kinds of speech gaps that students with a hearing loss may have. They also have an awareness of the specific areas of learning that are often more difficult for children with a hearing loss, for example double meanings.

Where students have a TOD visiting them, they are often withdrawn (or "pulled out") to work by themselves with the teacher in a separate room. TODs, because of their qualifications and training, will focus on more specific areas of language acquisition. Depending on the child's level, they may be doing very basic tasks for example pre-teaching or post-teaching, or for an older child, specific aspects of language, eg idioms, auditory memory for multiple tasks/requests. The much older teen may perhaps even be working on specific aspects of self advocacy and how to manage the multitude of teachers and classrooms in the middle and senior years of schooling. (For more information, you may wish to read one of our past blog posts, "What is a TOD"? written by a TOD.)

There are a vast range of options for supporting the child with a cochlear implant in the mainstream setting. This will depend on things like age at diagnosis, age at implantation, any language delays on starting school etc. The best way for parents to go about this process is to gather as much information as possible about what other parents & schools in their district and beyond, are doing and using that information to help plan what might best suit the needs of the child. However perhaps the issue that is as important as what that support might look like is what are the specific roles of the support personnel? Parents should be making sure that those roles and responsibilities are clearly defined in the IEP document so that everyone understands their part in the process. The other thing is that any goals set need to be reviewed at specific time points to see whether or not your child is meeting those goals. If they are not, perhaps the support services need to be re-evaluated to make sure your child is getting the support required. If by chance your child is meeting those goals, this is not a reason for the school to cut that support. They are meeting those goals because the support program is working the way it is supposed to!! BUT that might be a whole future blog!

If you would like more information including some helpful advice for teachers, like repeating instructions, seating, acoustics, check out this link, starting on page 8...click here

Feb 20, 2009

Little Drummer Boy (and his neurotic mom)

We're not a family of professional musicians, but we do enjoy listening to music and all have our eclectic tastes. Our older son, Colin, is a natural on the piano and keyboards and plays for pleasure. My husband and I curate our personal iTunes libraries and have holy wars of whether or not The Beatles trump Nine Inch Nails. But music is not something our son, Jeremy, who uses cochlear implants to hear, has gravitated towards in nearly the way he's embraced his Wii or Lego Bionicle collection.

Jeremy got his first cochlear implant at age 4. Even though 4 is considered late by today's standards, he gets a tremendous amount of benefit from his CIs and attends a regular elementary school where it's difficult to pick him out from the crowd in terms of academics, speech, or language. When it comes to music, I think he realizes he doesn't hear it the same way other children do. Still, for the past several years he has been looking forward to the band program that 5th graders at his school can participate in. He had his heart and mind set on playing the drums.

Finally, 5th grade arrived. We went to "band instrument pick-up day" where we were issued a drum pad and drum sticks. The idea of the drum pad -- which looks like a grey octagonal mouse pad on a heavy board -- is that it allows kids to practice the rhythms without having to lug a large and heavy drum on the school bus and home. He got a couple of drumsticks and a cool electronic metronome to go with it. (At the weekly lesson at school, drum students could play a real drum. )

At first this was pretty exciting. Jeremy proudly showed off his drum pad to Dad when he got home from work. But within days, reality set in. Tapping out rhythms on a drum pad is about as exciting as tapping a pencil on a desk. Combine that with Jeremy's perfectionism and my lack of familiarity with percussion (I can read music but know nothing about drums), it's a scene set for frustration. Inevitably, he'd put off practicing until the evening before the weekly school lesson. Jeremy and I would be exhausted from the day -- me from making dinner and him from doing his homework. He would reluctantly begin drum practice, with me coaching. (What we both really wanted to do was sit down at the end of a long day and veg in front of the TV.) To make matters worse, we misplaced the metronome and had to rely on the headache-inducing built-in metronome of our Yamaha keyboard. (CRACK! ding, ding ding, CRACK! ding, ding, ding...)

Jeremy was new to reading music and I had to review with him the difference in quarter and half notes. And I wasn't quite sure how one would really play a half-note on a drum anyway. You can't really hold a note, can you? So why, then, didn't the score just say "quarter-note, rest"? These questions and doubts infiltrated my mind and seriously undermined my ability to help. (My yoga teacher would be appalled.) And it was not even my drum!! I was anti-helpful. Jeremy felt he had to get each piece exactly right before moving on. If he didn't do it perfectly, he would crumple. Drumsticks would fly. I began to wonder if drums were such a good idea after all. In spite of this, Jeremy's ability to do a drum roll was amazing! And he did "get" the rhythm. Totally.

Around December, things began looking up. The drum pad was really so boring, that I figured maybe a way to lift Jeremy's spirits was to get him a real snare drum. Thank you, craigslist.org! I found a drum for a reasonable amount of money and drove to a house in the neighboring town to pick it up, hoping the seller wasn't actually a psycho killer with an elaborate scheme to lure unsuspecting (and even suspecting!) drum buyers to his lair. He wasn't. He was a perfectly nice guy and a professional drummer, and I walked a way with a steal. It was only 3 weeks before Christmas and 5 weeks before Jeremy's birthday. The drum would have made a perfect present, but the agony of the past few practices made me feel it was cruel to withhold it for that long. I gave him the drum immediately. Jeremy was thrilled! The drum is loud! Thank goodness it's possible to adjust the snares and to use a pad on it. I figured out a way to help Jeremy mark his music with a red pencil so he would know which beats to count and which to play. He still put off practicing until a day or two before the lesson, but was significantly more enthusiastic about band in general.

I thought maybe that besides reminding (nagging) Jeremy to practice, I should disengage myself from the practice sessions. It was his thing after all, and I was introducing unnecessary anxiety and doing more harm than good. If he asked for my help, I offered to simply "keep him company" in the room where he was practicing. I desperately wanted to call the band teacher and ask how Jeremy was doing, but I held back. The teacher is the 5th grade band director for the entire school district and also teaches the middle school band students. Although I was in need of reassurance, I knew he had his hands full and figured he would call me if there was a serious problem. But how was Jeremy doing??

Before I knew it, the date of the first 5th grade band concert arrived. (So soon? Would he be ready?) My husband, Jeremy's brother, Colin, and I all arrived at the concert, which was held in the auditorium of Jeremy's elementary school. We listened impatiently to the 4th grade string orchestra (they played 12 excruciating pieces!), and then the 5th grade string orchestra. Finally it was the band's turn. Jeremy would be playing the bass drum in the concert and his friend, Reid, was playing the snare. To our delight, Jeremy and Reid stood, in their button-down finery, in the back row clearly visible to the entire audience! For all of Colin's band concerts, he was hidden in the 3rd row with his saxophone. We considered ourselves lucky if we could catch a glimpse of Colin's foot tapping underneath all the chairs. But there was Jeremy with his very large drum! He looked proud! He was smiling -- beaming! ...but I was nervous. What if the loud volume of the entire band flooded his CI sound processors and made hearing anything impossible? Surely that bass drum would be loud and if he made a mistake, everyone would know. Would the other players be annoyed?

The band director waved his baton. The band started up. Boom, boom, boom, boom went Jeremy on his bass drum in perfect time with the music. We smiled, watching Jeremy mouthing the count of the beats - ONE, two, three, four, TWO, two, three four... It went perfectly -- in fact, the beat he set led the band. We were so proud of Jeremy, and so thrilled at the unexpected surprise of actually being able to watch him play. And the bigger thrill of seeing him do yet another thing that years ago I never imagined he'd be able to do ever didn't leave me for days. Indeed, as another parent said, every sound is a present.

by Lydia

(Lydia and Jeremy live on the street in New England where the American Christmas carol, The Little Drummer Boy was composed.)

Just for fun, click to view: Jeremy at the piano