It Will Never Stop Being a Struggle – But It Will Get Better

Back in December, Academy MetroWest hosted a parent workshop called Young Adulthood – Looking Forward, Looking Back. It featured 3 Academy MetroWest alumni, now in their early or mid 20’s, reflecting on the struggles they faced during their school years and the challenges they face now. This is our 3rd year of presenting parent workshops and we’ve had some good ones. This one, to me anyway, was the best one we’ve ever hosted.

In organizing this workshop, my aim was to address a concern that parents have expressed to me many times over the years. When talking with parents over the years, I have come to recognize “the look.” They will come into my office with a look of concern or anxiety and begin asking questions that approach closer and closer to what they REALLY want to ask, which is “What’s going to happen to my boy after he’s done with school?!?!” It’s a hard question to answer even with an educated guess. At Academy MetroWest, we work primarily with kids aged 6 – 15. Occasionally, kids will stick it out through high school but it’s rare that we stay in touch with them once they’re done with high school. We get second hand information from parents from time to time but we don’t often get it straight from the source. This workshop was an attempt to change that.

The 3 young men who spoke, Garrett Gregg, Adam Hurley, and Max Morrongiello did a remarkable job. The reason I sought these 3 out was because I’ve known them to be able to take a step back and look at themselves and their lives objectively and insightfully and then express those insights in ways that are honest, understandable, and compelling. They didn’t disappoint.

In the interest of protecting what’s left of their privacy after the workshop, I won’t divulge their diagnoses. Suffice it to say that none of them would argue with me if I were to describe them, particularly when they were kids, as being well within the confines of “quirky.”

We decided to structure the workshop as a series of questions and answers coming from parents and staff members.  Most questions tended to focus on “big picture” topics relating to what services have and haven’t been helpful over the years and what advice the panelists might have for parents with kids in situations similar to their own.  Garrett, Adam, and Max went into a healthy amount of detail but some overarching themes emerged during the hour and a half that they spoke.

1) Developing Self-Awareness Is Extremely Important

Developmentally, developing a sense of identity is one of the most important tasks for all teenagers. Particularly for adolescents with cognitive/social issues, it is also imperative for them to become aware of their strengths and weaknesses. As kids journey through their teenage years, they come to exert more influence over their own lives and directions they travel. In order to make good, responsible decisions, teenagers need to develop a sense of what they do well, along with what and whom they like and don’t like. Over the course of our presentation, Adam spoke of his feeling that “Self-awareness is probably the most valuable thing a kid can learn.”  He stressed how important this is when considering options for college. “You have to ask yourself ‘are you really ready?'” for a 4 year stint at a residential college or would you be better served as a part time student? Do you understand your limits? Do you recognize when you’re being too ambitious? In talking about his development of coping skills, Adam described the sense of being overwhelmed by the seemingly endless string of challenges facing him during his middle school and high school years and then continued to describe how he deals with similar situations today: “I learned to step back and break things down a lot. It’s still often challenging. There’s still plenty of times when I get overwhelmed. Now I can stop, walk away, and come back latter and see things in a new light. I know my own warning signs. Back in school, I was oblivious to them.”

2) Self-Acceptance Must Follow Self-Awareness

When he was describing the seemingly endless series of obstacles facing him in middle school and high school, Max described a feeling of being made to be “ashamed of himself” just for being who he was. Overcoming that sense and learning to feel okay with who you are is an important step for anyone, but can be a particularly difficult one for those people growing up with special needs. Coming to a feeling of self-acceptance and peace with who you are is critical for developing the resilience needed for facing new challenges. Garrett spoke about first coming to the conclusion that he could be who he wanted to be during his participation at Academy MetroWest but went on to say “… and then when I got older I learned I could be who I want to be outside of The Academy. They can all say what they want about me. The real question is ‘do I listen to them or do I not listen to them?’ The important thing that I’ve learned is to continue being who I am and just ignore all the naysayers who want to just discourage me.”

Given their reliance on routine, rules, and predictability, the move to college or any new post-high school setting is likely to be a difficult one for quirky kids. Learning about the new set of expectations and norms that will now govern their lives, without the everyday presence of parents to support them through the process, is likely to be a challenge that will not come easily or intuitively for them. Setbacks are inevitable. Garrett went on to say to parents “I think it’s important that if they (kids) are going to fail at something, it’s important to teach them the appropriate way to fail. You have to get to the point where you say ‘It’s ok. I can continue.'”

3) There’s a Difference Between Understanding and “Getting It”

All 3 of our workshop panelists were united in their feeling that in our schools, there is no shortage of people who want to help and have an intellectual understanding of how they’re “supposed to” help. However, they were equally unanimous in their opinion that there is frightening lack of people capable of providing that help. Max felt that the problem with school is not the people working in them but with a school culture that emphasizes competition and masculinity, with gym and recess being particularly difficult hurdles to manage. Adam neatly summed up his frustration with school when he said “There were always people who wanted to help or offered to help. I hate to say it but it was very rare that someone actually knew how.” The speakers also seemed to agree that what was really lacking among school personnel was a willingness to listen and offer support.

As a professional who often works in conjunction with school-based professionals, I know for certain that this disconnect does not result from a lack of caring on the part of teachers and administrators. People do not get into the field of education because of the endless stream of financial opportunities awaiting them! My hope is that educators will continue to take advantage of our growing knowledge of effective ways of working with children with special needs in order to more effectively match their interventions to their audience.

4) Listen and Don’t Talk Down to Kids

In 1988, I was a graduate intern at The Academy of Physical and Social Development in Newton. At the time, I had a friend who was coming to grips with a traumatic family background that involved abuse and severe mental illness. I spoke about her to my supervisor, Dr. John Cloninger, and wondered how a therapist would ever be able to help my friend deal with layer upon layer of baggage and emotional injury. John’s response was simple but memorable. He told me that the best thing anyone could do for my friend was just to listen. Not just hear – but listen.

The ability to listen without judgment and to communicate with children and adolescents without being patronizing to them is a vital skill for adults – parents, teachers, anyone who comes in contact with them – to learn. Different kids need different approaches and the best way to figure out which one will work is to watch and listen. During our workshop, 3 people with similar cognitive profiles reflected on the different reactions they had to similar approaches to helping them learn. While Garrett found it helpful when teachers broke big topics and assignments down into small chunks, Max found that that approach made his anxiety worse.

All 3 of our participants confirmed one impression I’ve had for awhile which is that there are no better detectors of BS than our teenagers. It’s important for adults to remember that in their efforts to be supportive or helpful, it’s vital to be straight with them. Be yourself. Be honest. Be empathic. Look for progress but set the bar at a reasonable level. Does that guarantee the results you want? Of course not. But you’ll be much more likely to earn the trust and respect of the kids you come in contact with, which will be beneficial for everyone involved.

Adam also stressed that adults aren’t the only ones who need to adapt. When asked what advice he’d give to kids who are in the same place he was in a few years ago, he responded by saying “(I came to the conclusion that) I’m going to have to be proactive to make my life better. It will never stop being a struggle to an extent. It will always be some work. It won’t be as bad and it will get better and it will get easier and easier as you go along but part of the way to make it better is – you’re going to have to be proactive too. And that’s something that only the kid himself can do.”