James continues to have the opportunity to write for the ECNV newsletter. Its a great organization committed to helping people with disabilities gain independence. The prompt for this newsletter was: “A lot of times we see parents with disabilities shelter their children from the world, instead of encouraging them to follow their dreams. Their intentions are to protect them, but this often results in the children not being able to live up to their full potential. For this newsletter, please describe your experience with this scenario and what kind of side effects can come from sheltering persons with disabilties as they mature”.
“Helping Hand, Not Hand Holding”
My experience with my parents has been one of growth and evolution. I needed a teacher, and they provided. I needed a companion, and they provided. I needed nutritional support, and they provided. Throughout my life my parents have provided me with all of my opportunities. I am appreciative of all their support, and now I am ready to be more independent. I would like to care for myself. I see my future including a meaningful career and independent living. Because of all their support, I have the ability to freely express my thoughts to them through my letter board. I have been able to share with them my goals to be an independent adult. I know it will not be easy, but they are supporting me in this journey.
Although I can’t say they have sheltered me, because I have been able to see and experience many new things, I think my parents have protected me from failure to a certain extent. I think this type of parental protection happens in many cases. For anyone seeking independence, failure is part of the journey. When parents take the possibility of failure away, even with the best intentions, an opportunity to learn and mature is denied. Many adults want to make life easier for the next generation. However, failing is a main ingredient in the recipe for success. In the case of young adults with disabilities, we are seen as fragile and helpless, not to mention incapable. At times, believing in myself feels impossible. I can imagine that at times it can be scary to let your child fail, especially when you have been providing and protecting them for so long. However, for those of us with limited abilities in speech, motor movement, or emotional regulation, we need to become strong individually and learn to count on ourselves. We also want to feel proud and accomplished, and even disappointed some times. These feeling are ones we can own and truly value.
My parents have always been willing and able to give me what I needed. Now, what I need from them is to let me provide for myself. I am still a teenager who wishes for freedom to do as I please, but each day I need a team of people to help me care for myself. Next year, each one of the adults in my life will only be around for minimal support. Each one of my tasks will be done by me, solely. However, in order for this goal of mine to become a reality, a lot of work on my part and also my parents and support team will be required. It will take a new mindset. Currently, I let my parents facilitate things around me. I will have to allow them to take a step back. I will have to experience failure and learn from it. This will include everything from everyday tasks, to communication, to transportation. I will have to be uncomfortable. I am starting to realize that growth happens when we are uncomfortable and open to learning from those experiences. As children, just as much as our parents, we like to stay in our comfort zone. In order to reach our true potential, we need to be open to change and our parents need to let us be uncomfortable. I am thankful for my parents being so aware and invested in my future. They believe in me, that is the best gift I can receive from them.
Returning James 
Great piece (and I like your picture, haha)! I confess to having been a parent who tried to shield my kids from failure too much–it’s a trap we all fall into and I’m trying to be better about that now (better late than never). It’s interesting, this struggle to be considered an adult. Garth remarked earlier tonight that when you say, “You’re an adult,” to a young person, they think that means “whee–I have more freedom.” But we as grown up adults see being an adult as meaning we have more responsibility….It can be a struggle! We wish you the best and God’s blessings as you make this foray into your next season, James.
Hey Debbie! Yes I had the perfect picture handy! This is an important topic and challenging part of life with or without disabilities. Thank you for sharing about your family!
James, very true, we are all victim to this as parents- there is a great discussion on a facebook page called the Autism Discussion Page with an interesting read. Conditioned Dependency
”Conditioned dependency” is a condition that I see very frequently in child, teens, and young adults on the spectrum. It is a condition of becoming overly dependent on others to do for you, because they haven’t expected you to do it on yourself. It is assuming that the person actually has the potential to do it, but we do not expect it of them. Learned helplessness is very common in developmental disabilities, because we often feel that they cannot do things, so we never give them the expectation.
This condition occurs for three main reasons: (1) we lower the expectation because of the disability, thinking they are not capable, often holding the child back, (2) because of their opposition, anxiety, and fear of meltdowns we are scared to push them, or (3) with our busy lives, it is simply faster to do it ourselves, then to teach them. These three things are always a balancing act, when raising a child on the spectrum.
We should be very careful to not “assume” that a child doesn’t have the ability to learn something, regardless if they are verbal or nonverbal, social or not, etc. I think you should always assume “competency”, meaning that if they don’t know “how” then they have the ability to learn it, with support. If we start there then we are always holding the bar a little higher, and not letting their “autism” lower our expectations. In my 30+ years of working with developmental disabilities, our greatest disservice is the low expectation we assume. We get what we expect, and that often holds the child back.
WE-DO ACTIVITIES
To avoid conditioned dependency, and become a good coach for your child, think of using daily routine activities as “We-Do” activities. If the child is not totally independent in a task, then don’t simply do it for him, but make it a “we-do.” In we do activities the child learns to be competent by “doing together” with you, helping each other out, learning by doing with you. In we do activities you don’t teach by standing back and prompting the child to do it. You teach by “doing it together, side by side, assisting each other. We tend to either prompt the child to do it, or we do it for him. We need to take the time to “do it together”, allowing the child to learn by following your lead and doing it together. You simply guide and assist, rather than do for them. You always expect the child to be an active participant (learner) in the activity. You scaffold the activity (bathing, dressing, putting dishes in the dishwasher, raking leaves, whatever) to provide only the support needed to maximize success, while fading that support as the child becomes more independent. You teach the child to feel competent by following your lead, and actively engaging with you. By turning daily activities into “we-do” activities, the child learns that he is expected to be an “active participant” in everything, and gains greater feelings of competence.
Many children on the spectrum are scared of uncertainty and avoid risking and learning new things. If you allow them to fall into this “comfort zone” of avoidance, it becomes harder and harder for them to grow. This is another topic of its own. Children on the spectrum have strong comfort zones for everything (participation in activity, social interaction, sensory sensitivities, emotional security, avoidance of “thinking”, etc.). We want to teach these children to feel “safe, accepted, and competent.” To do this we need to continually be stretching these comfort zones, keeping the child feeling safe by stretching very carefully, but not allowing them to become too comfortable in their comfort zones. By doing so, the child learns to feel comfortable risking and learning new things, while experiencing mastery and building self-confidence. Remember, the child’s with ASD natural tendency it to “stay in the comfort zone”, thus the need for “sameness.” So, we always need to be stretching these comfort zones, through “we-do” activities, so the child first feels safe by “doing it together”, and then confidently doing independently.
So, do not do for your son or daughter, do it with them, framing and scaffolding the task to make it successful, but stretching their learning.
James, My husband and I are opening a group home for our daughter with autism who types to communicate. Thank you for this valuable insight. Many parents have problems letting go to give their children space to grow. Your insight encourages me.
Brooke I continue to be amazed at James’s great wisdom. You and your husband are doing a superior job in parenting James. God bless you. Nancy
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