RISING BEYOND MEASURES OF SPECIAL ED CLASSIFICATION

I believe music is an instrument.

It can create the initial thought patterns that can change the thinking of people.

-        John Coltrane

Special Education is a world of normative comparison. Measured against a comprehensive set of behavioral, developmental, and educational standards, young people with Special Needs are ushered into categories designed to notify parents and teachers as to how best address urgent and particular student needs. Alongside the potential emotional impact  that such diagnoses may wield comes an opportunity for Child Study Teams to bestow upon their charges a truly special gift:  the gift of experience-based Music Programming.  Throughout the last decade of our musical work in several New Jersey Schools of Special Education, we have witnessed countless young people lift themselves up enough to see out, over and beyond the walls of categorization and learning/behavioral challenges that so often aggressively obscure their own vision towards personal success.

We have witnessed some pretty remarkable things…

It has become a regular event to see groups of students play hand drums for 20-30 minutes at a time without  stopping to speak. The prolonged mental focus and physical organization displayed by these music players stands in sharp contrast to the “deficit of attention”  and “hyper-activity” so often ascribed to their behavior.

We have seen young people choreograph solo modern dance pieces that not only reflect a fluidity and control of body but also demonstrates a strong ability to sequence and memorize creative movements representing the very emotions that can take too much hold of them in stressful situations.

We have seen students terrified to speak in class who have proudly asked to make announcements as members of the school’s Stage Crew.

We have seen the shyest of shy students flourish in well supported live performance opportunities.

Several times, we have heard students state that the music program is what keeps them in school.

We have seen students whose reading and writing skills are considered below grade level dazzle listeners with intricate freestyle and composed rap lyrics complete with effective use of such literary devices as metaphor, imagery, and allusion.

One exceptionally talented 17 year old student was invited to perform at the New Jersey Performing Arts Center after being selected as one of the statewide finalists in a Songwriting Contest. This contest is designed to educate students about the dangers of drug and alcohol abuse. This young man wrote extraordinarily powerful lyrics about his own experience with substance abuse as well as how it negatively interacted with his prescribed medication. The dangers he spoke of were painfully real as this young man endured psychotic episodes induced by his former abuse of illegal drugs. As he moved toward recovery, his recitation of 2 pages of lyrics served almost as a mantra he repeated several times a day in preparation for what was a truly inspiring live performance in front of hundreds of people at NJPAC.

As we have seen, felt, and heard; Music is powerful. Music is universal.  Music resonates within and between us all.  When we help young people  re-recognize their undeniable and natural connection to music we foster a greater sense of belonging,  we build community, and we enhance self-esteem.

All it takes is a hand on a drum, fingers on a keyboard, a stomp of feet, the raising of voice. We can make music happen anywhere; at any time. As music educators, our goal is simply to help facilitate the reconnection of young people to their music. No experience but human experience required.  And when that human experience holds exceptional challenge, it deepens our duty to preserve and encourage  the intrinsic human connection to making music.

 -Pete Kalvert

  Founder/Director, Music Ascension LLC

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• How did last summer go?  Thinking about this is a good start to planning the upcoming summer.  Many families that I speak with will decide to keep their child home and come up with activities here and there to fill the time.  It seems like a great idea when looking for relief from the stresses from school, homework, rushing out of the house in the morning, etc.  However, this takes a toll on the family, particularly the primary caregiver.  I find that the month of September is a difficult transition for parents as they have been exhausted from the summer.  This puts pressure on the family as the family may not have rested and regrouped during the summer and is not prepared for the start of the next school year.  If this sounds familiar, maybe consider some more structured activities for your child over the summer.

• Making summer plans can bring the next challenge as to where to send your child, and does your child want to attend.  Finding the magic fit of a program that you feel comfortable sending your child to, and the focus of the camp being something that your child is interested in may be difficult to find.  Talking to other parents and reaching out to the community may be good options to help with this.  The other point to consider is do you send your child to a camp that has experience in managing the needs of your child?  This is a very personal question.  I have worked with many families who have placed their child in mainstream camps.  Often the camp experience goes fine and the child was able to participate in activities that he or she would otherwise not have.  However, the silent side of this decision is the question of actually how well the child integrated socially at the camp and what impact that had on the child.  Making it through a camp is one thing.  Looking at the new skills learned and self-esteem building is another thing.  For this group of children, making it through a camp does not necessarily mean they were able to integrate and thrive.

• I also encourage families to consider where their child is academically.  The summertime can be a great time to provide some tutoring to build skill and confidence in academic areas of need.  I often encourage parents to create balanced opportunities for using the summer to build academic strength, increase skills around independence, and address social skills.  As camp Altitude is a 2-week program, it offers an opportunity for campers to build skills at our camp but then allows them the time to focus on additional areas of growth over the summer such as academics.  All while providing some structure for the child and an opportunity for parents to recharge themselves emotionally to prepare for the next academic year.

• Considering the idea of a sleep away camp may be difficult for many families as they are concerned about how their child will thrive away from home and their usual routine.  An important part of my work with families is helping parents think through their goals for their child after high school.  If parents find it important to have their child move out of the house after high school at some point, creating experiences for the child to be away from home will be critical.  Being away at camp during the summer helps the child realize that he or she can be successful living away from home.  This is a huge concept for young adults to have when they are starting to consider their plans for the future.  Their experiences being away from home in middle school and/or high school can positively shape their view of independence for the future.  In addition, parents gain the experience that their child can be successful outside of the home.  This helps parents become less anxious when talking with their child about plans for the future.  Parental optimism and excitement for encouraging independence is critical for the child moving forward towards adulthood.

Thinking through these points and talking with friends and family may help to crystallize a plan for your child that will provide a fit that is right for your family.

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One way to look at the role of self-confidence is that it should be the first part of a positive cycle of teaching. For example, when a child is presented with a new task such as being given money to go into a store to buy a desired item on his own, creating excitement for the child regarding how proud you are of him and excited that he is ready to take on this new skill will create pride in the child. That self confidence that come from the success of his step into independence should be held onto by the family and used to encourage a new step towards independence that the family feels is appropriate.

Most children want to be independent but can feel overwhelmed by what it all means. Breaking down tasks to manageable sizes for your specific child and then being aware of the importance of building confidence after each step will pay off as the child continues to mature. Building independence without also building self-confidence can lead to stalled progress for the child and family. Maybe take a few minutes to think about how you are working on building independence with your child, and if you are adding the right dose of self-confidence to keep the momentum going.

Opportunities for the child to be away from home are another way to build independence and self-confidence. Here is an article that also addresses this issue. http://autismdigest.com/tips-for-teaching-essential-independence-skills/

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I have been working in various capacities with parents of children with social cognitive challenges including autism, Asperger’s, NVLD, and other similar challenges since 1989. There have been years during the course of my career where I have focused more on direct work with children providing counseling or social skills. Over the past 10 years my work has been specifically focused on working with parents, including parents whose children are young adults. Throughout my years of experience I have found that the skills needed to parent children with social cognitive challenges are unique. My focus has been to help parents understand their child’s perspective and their individual needs. As parents become more confident with their parenting abilities, significantly more can be accomplished in helping their children to function at their personal highest potential. In my work with parents we also address grief, as the grief process is a natural part of the experience of parenting a child who has special needs. Many of my clients find some healing from grief as they come to understand the unique strengths and challenges of their child. To learn more about my work feel free to look at my web page at www.marcischwartz.com.

During the course of my work I came to notice that a typical challenge for parents of children with special-needs was the tendency to feel isolated in their communities. To address this, I have created a series of parent support groups (and a sibling support group) where parents can both learn and connect with other parents dealing with similar challenges. For more information please explore www.asdparentalsupport.com.

From my many interactions with families, I have come to learn a few additional challenges that parents face. One challenge is the importance of working with youth who have social cognitive challenges on building their independent living skills. Many parents and educators will focus on academics as a sign of success but I have observed that, without independent living skills, it is difficult to translate academic success to what the young adult can handle after high school or college. Helping children to build independent living skills is frequently a challenge for parents, as change can be slow in home settings where years of patterns have been entrenched. Getting kids out with their peers can be critical to building these skills.

I have also observed a lack of summer social experiences for this group of kids. So much is learned from traditional camp experiences, which can contribute to the development of social skills, independence, working with groups, communicating, advocacy, etc. Without the proper setting, many kids with social cognitive challenges may miss out on these opportunities. I have spoken to many families who have sent their high functioning kids to mainstream camps. While this can result in a positive experience with the right staff and setting, oftentimes the support which is really needed is simply not available to the child, and the child finds that he or she is not able to express his or her needs in these settings. These experiences can seem positive on the outside as the child completes the camp, but we have to ask; was the child’s self esteem enhanced, did they learn new skills? Frequently it is difficult to know.

In 2010 I founded Camp Altitude, www.camp-altitude.com to address the goals of providing a setting where campers with social cognitive challenges can find a place for building their independent living skills, social skills, and most importantly, have a fun camp experience with a staff and group of campers they can connect with in self-esteem enhancing ways. As we have learned more and expanded our program we now offer residential Camp Altitude West experiences to children in Middle School and High School in California, as well as residential Camp Altitude East experiences for the same age group in New Jersey; additionally, we are launching a day camp for 3rd to 5th graders in California this year!

My goal in the programming and services which I provide has been to help families learn and create the best outcome for their child based on who their child is and his or her unique strengths and challenges. This will look different for each family. This blog will talk about ideas, strategies, perspectives, experiences, etc. that can enhance our understanding of the best ways to support families and youth.

As we are excitedly gearing up for camp this summer, we are pulling together new ideas to build on our current curriculum. We are bringing on new staff to enhance our programming, including an Athletics Director, Music Director, Art Director, Drama Director and Outdoors Director. Hiring great staff is something we feel proud of at camp, as it is one of the reasons I believe we have been so successful. Staff that understands that working with our campers demands a different outlook on engaging with campers is critical. I was thinking about this recently as I was watching a group swim lesson with 3 kids and 1 instructor. There were 2 girls and 1 boy in the group, all about 11 years old. The girls were easy to engage for the teacher but the boy kept more to himself. The instructor clearly enjoyed working with the girls as they responded to his instructions and his playfulness. When the instructor turned to the boy and tried the same engaging words, the boy had no response. The instructor playfully called him a “dork” and moved on.

To me, this was a great example of how some kids need a different approach to engage them. But most adults don’t take the time to think about changing strategies and instead simply move on. Many kids with social cognitive challenges don’t say anything about such interactions as they often have difficulty processing and or verbalizing what happened in the interaction and what went wrong. The child might feel like it was a negative interaction but not be sure why.

How can the adult change the interaction if he or she sees that the child is not engaging in the expected way? The first part is for the adult to notice that the child is not engaging in the expected way, which is no small task. Once the adult is aware, then taking a few seconds to think about the child’s perspective is helpful. In the swimming example, the child might not understand the point of being playful in the water if the purpose of being in the pool is to learn to swim. Or the child might not have a “silly” side to him and simply had no idea how to respond to the playfulness. Or it could be any number of things that are unique to the child.

Working with youth with social cognitive challenges takes more time for the adults. It just does. But the payoff for the child and the relationship can be enormous. We see that at Camp Altitude. By the end of the session there is so much empathy and understanding from the staff towards the campers that there are often tears during the last night when we say our goodbyes. That final night was built by many interactions between the staff and campers that involved effort by the staff to understand each camper. When the camper sees and feels that effort he or she often responds positively and opportunities for learning and growth happen. It is great to be a part of that.

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