Empowering Kids with Special Needs
Ask me about any adult movie (i.e.: Have you seen blank movie?) and my response is likely to be No. Ask me about any kid movie and I could tell you about the characters, plot, and punch-line all in one breath. That’s how it is when you live with a six-year-old and a four-year-old.
So, it shouldn’t be too surprising when I tell you it was in the children’s movie Finding Nemo that I saw a great metaphor of what it is like to live with kids with chronic illness and special needs. You see, both of our children have cystic fibrosis so I do know what it’s like. And, like the clown fish dad on Nemo (named Marlin) I have journeyed from the place of over-protective and “worried about everything” parent to “still worried about everything but handling it a lot better” parent.
I suppose there is always room for improvement in most things in life, especially parenting. The problem with parenting is that we may not realize how much improvement we really need until it’s too late (i.e. my teenagers become hellions, and I wonder what happened). The problem with parenting kids with chronic illnesses is that “too late” doesn’t mean just a dented car or some experimentation with booze or sex - it can mean the difference between life and death.
The struggle to resist one’s overriding and all-powerful parental impulses to rescue, hover, and (over) protect a beloved child is played out only too well in Finding Nemo, just as it is in the homes of millions of families across America and the rest of the world. Sadly, the triumph of overcoming those impulses and the achievement of healthy acceptance, is not experienced nearly enough. The paradox is, it is in letting go of the intense need for control and protection that actually gives the child (and those around him or her) the freedom to become a hero and unlock the greatness of spirit inherent within the soul of one who has learned to cope well with suffering. Just like Nemo!
We begin Nemo’s story with a happy little fish couple embarking on one of life’s greatest adventures - sharing their love and multiplying it by bearing a child or, as in the case of Nemo, bearing thousands of fish eggs! After a disastrous start, where the mommy fish and all the eggs but one are devoured by a big, hungry fish the real story begins with Nemo and his dad “picking up the pieces” of the initial trauma. To make it all the more poignant, Nemo is born with a deformed, or “lucky” fin. So, here we have initial trauma and physical disability - a perfect recipe to create an over-protective, hovering parent, oozing with over-concern for his son’s welfare and condition. He limits, rescues, protects, and controls Nemo; his expectations of Nemo’s ability are low (due to his disability), and he does not trust Nemo. Furthermore, Dad has very little sense of humor. He is somber, worried, and agitated about every detail in Nemo’s life. In fact, Dad’s life completely revolves around Nemo’s. Sound familiar?
The big event in Nemo’s life is his decision to rebel against his father’s controlling, over-protective nature. No big surprise, there. Nemo has no choice but to exert his independence in a way that is contrary to his dad’s wishes because Nemo has never had the freedom to make his own choices. What else is an over-protected, over-controlled clownfish to do? So, he touches a boat in defiance of his dad’s commands just to prove to dad, friends, and himself that he can do it. And, in doing so (if you haven’t seen the movie), he gets swept up by a scuba diver and appears destined to become part of a fish collection in a dental aquarium.
How many kids with chronic illnesses have no choice but to rebel against parental authority by refusing to comply with medical requirements? If a child is not “allowed” to make the choice for death, then they cannot make the choice for life. Parents need to allow their children the possibility of making the “wrong” decision in order to give them the opportunity (and desire) to make the right decision. It is best to allow those decisions (or choices) to take place in small, non life-threatening ways, so that the control over the child’s body is shared over the years, over time. For example, a parent might say, “Would you like to do your breathing treatment before or after your homework?” or “Would you like your insulin shot in five minutes or ten minutes?” or “Would you like to take your pills with juice or milk?” A lifetime of small choices creates a “savings account” of shared control that can be “cashed in” when it’s time for the big decisions of life - such as whether or not to live.
The movie follows two tracks at this point - the story of the dad’s search-and-rescue operation for his son, and the story of Nemo’s journey of rescuing himself. The movie becomes the story of a parent struggling to let go, of learning to trust and accept, thereby empowering the child to become more than either had ever dreamed possible.
As Nemo starts to make his own way around the aquarium, he gets stuck in a filter. I think it is his life’s first defining moment. Immediately, the other fish around him leap to rescue him and pull him out. But Gil, the seasoned old master of the aquarium, stops them and forces Nemo to rescue himself. Listen to this: Nemo (in panic), “Can you help me?” Gil (calmly and kindly), “No, you got yourself in there; you can get yourself out.” No rescue, no over-protection. Gil proceeds to share his ideas about how to do it, gives him encouragement and high expectations, and Nemo gets unstuck all by himself. And now Nemo is proud of himself. His self-image soars; he can do it!
Effective parents do not hover, rescue and over-protect (Helicopter Parents). They don’t demand or command (Drill Sergeant Parents). Instead, they are Consultant Parents. Consultant parents guide their children to solve their own problems by giving loving support rather than answers and quick fixes. They share the control and decision-making. They express sadness and sorrow instead of anger, frustration or worry when children make mistakes. They set appropriately high expectations. They allow empathy before consequences to do the teaching for misbehavior rather than punishment. They ask good questions instead of give lectures and criticism. They use encouragement- not praise. Consultant parents teach their children how to think instead of what to think. They give their children the foundation and skills to become the heroes they are destined to be. Just like Nemo!
Meanwhile, Dad is learning a few things about himself, too. As he searches the ocean for his son, many fellow fish and assorted sea life help him, but one in particular, Dory, joins him on his journey. Dory is a great example of loving support. She is steadfast, loyal, concerned, helpful, reflective, and, best of all, she has a great sense of humor. She is downright funny. And, she trusts.
A few words are needed here about a sense of humor. When you have a child with a chronic illness and other special needs, a sense of humor is sometimes elusive. What is funny about medical treatments, financial burdens, and seeing a child suffer physically and/or emotionally? But, as we find and develop that sense of humor (and it does take time and practice) we can overcome the adversity and focus on life’s blessings rather than its curses. This lightens the heart and lessens the burden. Humor just makes life more fun for everyone around us. Poor Marlin has no sense of humor in the beginning but, after letting go and accepting his son (at the end of the movie), his humor flourishes, and it becomes clear he enjoys life as he reveals his true nature as a clown fish. But it took a journey with many trials to bring him there. Humor on the outside is a reflection of joy on the inside. Sometimes, we have to fake it till we make it. But, that’s okay, too. Humor on the outside can bring joy to the inside.
Dory knows how to have fun in the face of adversity - to look on the bright side of life, to trust in the moment. When Dory and Marlin get caught inside the whale, Marlin gets very angry. He blames others (including Dory) for his “dire circumstances.” Then he hits a wall of despair. He is so wrapped up in his own plight that he fails to see the love around him, the beauty of God’s creation, and the humor of the moment (stuck inside the belly of a whale that Dory actually talks to in whale-ese). He sees only his single-minded quest - to rescue his son - and its impending failure (in his eyes). Listen to the exchange between Marlin and Dory, which marks the beginning of his acceptance of the situation in which he finds himself. Dad: “I promised him I would never let anything happen to him.” Dory: “That’s a funny thing to promise. Well, you can’t never let anything happen to him - then nothing would ever happen to him. Not much fun for little Nemo.” Parents who overprotect and rescue their kids erode their opportunities for life, experience, and growth. They also erode the child’s chance to become a hero.
The climax of the movie brings us to the reuniting of father and son. Note: Dad did not rescue his son; with the help of friends, Nemo finds his own way out of the aquarium and back into the ocean. When first reunited, Dad immediately adopts his old attitude of protection and control, but Nemo’s enduring and compassionate spirit will not allow his father to stop him from rescuing the many fish caught in the gill net, which is about to be hauled to the surface of the water. Nemo has had a taste of freedom from his father’s well-meaning tyranny. Now he has the opportunity to become a hero - not only in his own eyes but in the eyes of the underwater world in which he lives. His Dad has no choice but to let him go and to trust. With this freedom Nemo is able to release the hero that had been bottled up inside his soul by his father’s control, over-protection, and rescue. And, in releasing that hero by courageously rising to the occasion, Nemo changes the lives of those around him.
I think that deep down inside the soul of every child who suffers from a chronic illness is that same hero just bursting to come out. As parents we can encourage our children to become that hero, to face life courageously and joyfully in the face of adversity and suffering. By doing this, we also become heros - both to our children and to others around us. In modeling this, we teach our children how to release the hero within them. It is not an easy journey, but a worthwhile one. Just ask Nemo. And, his Dad.
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Click here to read "Finding Nemo" in Spanish.
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Lisa Greene is the mom of two kids with cystic fibrosis and a parent educator. Foster W. Cline, MD is a well-known child psychiatrist and co-founder of Love and Logic. Together, they have written the award-winning book “Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Other Special Needs” available at Love and Logic.
Lisa C. Greene
Copyright © 2004-2010 by Lisa C. Greene. All rights reserved. Reprinted by permission of the author.