By: Mary, mother of Pace
Parent of a Student at Stewart Home and School
Our son Pace enrolled at Stewart Home and School in September of 2014. He was 19 years old and mainly had attended public school. During his four years of high school, he was fortunate to have an amazingly talented and dedicated teacher in the relative isolation and controlled environment of a comprehensive development classroom (CDC). We are eternally grateful for all the skills Pace gained under her diligent eye, but nonetheless, he only was able to graduate with a certificate of attendance, so his options for post-secondary education were very few.
Cue Music: Thank Heaven for Stewart Home and School!
Sub Title: Will the Shoe Fit?
Pace’s diagnosis of autism makes him painfully aware of sensory input, awkward in social situations, and although he may have many wonderful thoughts, he is able to communicate verbally with only a few key words and phrases.
That’s a big drawback when you are new to a situation, and your comfort, care and ability to grow are dependent on a universe of new people.
But Pace is the painter in this scene, and our job is to create the scaffolding. This safe and sturdy platform must be constructed in such a way that it can completely support the artist and also bear the weight of many others helping him. It has to reach far enough, wide enough, and be easily accessed, yet appear invisible. The main event is the painter and his artwork, not the boards and metal that allow him to reach his canvas.
Knowledge is Power
Having an essentially nonverbal child causes many parents to jump into the breach – to interpret, explain, promote, and defend. Our family has gotten very good at doing this for Pace. Yet we try to always follow his cues – constantly vigilant for signs that he agrees or disagrees with how things are going. He will clearly communicate his preferences with behavior we have learned to recognize instantly. How to provide our keys to new people? How to provide helpful information without seeming overbearing? As with most unwieldy tasks to be conquered, it’s best to break it down.
We are All on the Same Team
Focus on the student. The name of this team you are forming is the name of the student. “Team Pace,” in our case, and everyone is all in this together. So break important information down into categories, and make the chunks small enough to understand. Make no assumptions. Have positive expectations. Be clear, and be upbeat. Reward effort, and always express gratitude.
A Sample Strategy
This may not work for everyone, but here is an edited version of how we offered tips about how to deal with Pace. We called them “Cheat Sheets.”
Self Care – morning and evening routines, what your student can do easily, what he or she is still learning to do, and “stretch goals” you believe he or she can master in time and with help at Stewart.
Especially with nonverbal students, always include tips on recognizing stress/anxiety and managing behaviors. Sometimes written supports and pictures are helpful, and tones of voice and the level of prompting are important. You know your student best and what motivates him or her or makes challenges worse. Note rituals, compulsions, and most effective ways you have found to communicate with your student (i.e. “yes” or “no,” “do you want this or that,” questions — nothing open-ended).
Food Preference/Skills – A place to start is to list food likes and dislikes, then let the magic of Stewart take over. Your student will most likely be getting more stimulation and exercise than usual while enjoying more sleep than he or she may have had previously, and this will all contribute to a better appetite and willingness to try new foods. We have found that even though our son has stubbornly refused to give up his true food aversions (vegetables, bleah!), he has surprised us by trying many new dishes. A healthy lifestyle, a creative culinary director, a diligent house parent and positive modeling by peers are wonderful things!
Learning Style — Present your student’s strengths first. List challenges. Note the flipside of personality traits that can be used to the teacher’s advantage (i.e. if the student tends to be a little OCD, any task that is started will likely have to be finished). If your student is a clock watcher or a schedule keeper, make sure to share how you use supports in these areas to help your student get through a busy day and deal with changes and transitions. If processing is difficult for your student, share ways you have learned to clarify and slow things down so as not to overwhelm. Sometimes there are unconventional ways to impart information and learning, like through music, humor, role-playing, and visual supports of all kinds.
Include insight on how fast the student learns and how well he or she retains knowledge and whether or not he or she enjoys independent or group study.
Sensory Issues — Outline what aspects of an environment might affect your student negatively, how to recognize signs of stress, and what strategies have worked to alleviate that stress. If you have developed a sensory “diet” like joint compression, brushing protocols, and/or weighted vests or blankets, explain the routines and provide the tools you use. There are so many things you may take for granted that would be useful for new people to know – like a tendency to gag during routine teeth cleaning!
Danger Signs – These may range from physical or verbal tics to a change in eye gaze. Try to describe what it looks like when your student is losing self-control and strategies you use to keep him or her from going into a full-blown episode. This may be as simple as applying deep pressure on hands or shoulders, lowering your voice, simplifying speech, or disengaging and giving more physical space. There may be things you can ask to be provided like a “quiet zone” retreat in the classroom, a beanbag chair, a box of sensory items to “fidget,” or other things that might have a calming and focusing effect on your student.
These are just some suggestions for areas to discuss with the Stewart team as your student is settling in. We found that our suggestions were received with eagerness and with open hearts and minds. The document was quickly photocopied and distributed to every person who had anything to do with our son’s academic, residential, or social life. That’s a ton of people, and everyone who read it thanked us for it and found it very applicable to the behaviors and challenges they were seeing with our son. “You were right about the teeth brushing,” we would hear. “I tried speaking low and slow like you said, and it worked.”
If something new came up, they simply asked us. “What would you do to get him to move a little faster in the morning?” Or, “Do you have any suggestions for other things he can eat because he won’t even try such and so?” We didn’t always have an answer, but the dialogue has always been respectful and productive. We are grateful for the depth of knowledge and experience that staff and teachers have at Stewart, and we have been bowled over by the skills and confidence our son has gained in a short time.
The Magic and Mystery
We still fret and cry. We miss our son. We pray for his caregivers and teachers. Little by little we are regaining the feeling in our arms that ache to hug him. We spent nearly 20 years building the habit of never letting him out of our sight (except for a few hours or a couple of days with a highly trusted caregiver). We emotionally (and often physically) treated him like he was a fragile egg on a bed of feathers that couldn’t be dropped or we would all die. Driving back down the hill and through the gates of Stewart after leaving our son that first day was terrifying, wrenching, almost impossible. Some of it was fear, some of it was grief, and much of it was guilt that we had failed to do enough to help him become an independent member of society. Friends of ours who are also parents of a resident of Stewart told us they felt the exact same way. And now, years later, they tell us they still suffer fear, grief, and guilt because they did not enroll their child sooner.
It is hard to explain the magic and mystery of Stewart Home and School. Some of it is the incredible team of staff and teachers, many of whom have worked together for decades. Most everyone seems to consider their job a calling, and boy do they have it down pat! Some of it is the breathtaking natural beauty of the place. One starry, crisp, fall night I was walking back to my car from our son’s dorm, and a flock of geese in perfect V formation, melodiously honking, flew directly over my head like some kind of blessing meant just for me. Some of it is the power of the peers. It is almost impossible to “go against the flow” at Stewart. The community feeling of acceptance and joyful celebration of any win is so strong. The compassion and empathy is also palpable. It is a mystery to me how everyone knew our son’s name within weeks of his arrival.
We had so many dreams for our son. We still do. But we always thought we would have to make “it” happen, whatever “it” was going to be. Now we see that our son is perfectly placed in an environment where he can make a great life for himself. He is in charge of “it.” And the word that springs to mind when you look at our handsome son. cheerfully going about learning and growing at Stewart Home and School, is the word gratitude. He is showing gratitude — pure and simple.
Disclaimer: These suggestions are based on our unique experience and may not be useful to everyone. We do hope that some part of what we say may help to reinforce efforts and focus preparations for new and returning student residents. We have been a part of the Stewart family only since September, so we also have a lot to learn!