In this section I've tried to outline some of the major issues that you and your child will face, not only in the next few years, but throughout your child's life. These issues include: Your child's hand appearance, how your child develops skills with that hand, how your child feels about his hand, and how your child's hand affects you. Be wary of thinking that "now you've got it all figured out" or "now everything is OK", because it will change. You will change, and your child will change; but these issues will still be there. Don't look for a fairy tale ending like "my child was born with a hand anomaly, grew up, was able to do everything perfectly, and lived happily ever after." Aviva Bock, a psychotherapist in Newton, Massachusetts, states that it is essential that parents understand that, when raising a child with a hand anomaly, "These issues become part of the fabric of your life. You will check in with them often. There is no once and for all answer."
How Will My Child Adjust to Having a Hand Anomaly?
Many factors that will help your child adjust well are within your control. These include providing lots of support, helping to create a nurturing and accepting environment, exposing your child to others with hand anomalies (more about support groups below), and having reasonable expectations of yourself and your child. It is important to help the child to develop a strong sense of self esteem and to monitor the child's emotional response to his hand. On the other hand, you can't control your child's basic personality and temperament. If your child has an inquisitive nature, readily takes on new challenges, and perseveres despite setbacks, she will have an easier adjustment. If your child has a defeatist attitude, it will be harder for her. Children with congenital hand anomalies make adjustments over the course of their development, sometimes in phases. A child who is well-adjusted as a preschooler may face greater difficulty as a teenager or vice-versa. Children can be extremely resilient - a term used in the field of psychology to describe how individuals draw upon a source of inner strength to enable them to overcome hard times.
What do Children Think About Their Hands?
What a child eventually thinks about her hand, is most shaped by the reactions and comments of those around her. Since her parents - and everybody else who interacts with her - knows about her hand much earlier than she does, their reactions cannot help but shape her own feelings about her hand. As a sensitive being, your child learns to pick up on subtle things, such as body language, facial expressions, voice intonation, and even emotional responses. In the process, the child slowly internalizes others' reactions.
Children may overhear things that others say about their hand, some true, some untrue. Your youngster may repeat (and believe) what other children, in particular, say. For example, a small child may hear remarks and think that G-d is punishing him or that his fingers magically will grow as he gets older. One mother reported that her three year old girl with a hand anomaly said, "Mommy, don't hold that hand. It doesn't have any fingers." This comment may have resulted from an unkind remark. Sometimes children try to hide their hand to avoid bringing attention to themselves after hearing criticism or teasing.
If your child says these things to you, or tries to hide her hand, or if you overhear her saying such things to others, it is important to work with your child to dispel such myths. Sometimes it may be necessary to speak to the parents of one of your child's peers to inform them of the things their child is saying about your child's hand. Just remember, when you talk to another parent, that most children are not intentionally malicious; that for many young children, reality and fantasy are indistinguishable.
What Will & Won't My Child Be Able to Do?
Though your baby is only 2 days, 2 weeks, 2 months, or 2 years old, you may be wondering what life will be like for your child with one or even two anomalous hands, or without any hands at all. I encourage you to write your questions down, no matter how trivial they may seem to be. Parents' worries about what their child may be unable to do generally fall that into three broad categories: functioning in the world, social/leisure activities, and rites of passage. Let's explore each of these.
Functioning in the world. How will my child tie his own shoes? How will she zip her jacket? Will he ever be able to open a bottle of soda? Will she be able to drive a car? Parents fear that their child will never be independent, needing to rely on the good of others to manage. My mother told me that whenever it rained, she always felt sad as she envisioned me - as a child and then later as an adult - trying to hold an umbrella with my "normal" hand while carrying a school bag or groceries with my anomalous hand. One parent spent the first day of his child's life practicing tying a shoe with one hand to convince himself that his child would be able to do this someday.
Social/leisure activities. Frequently, what saddens parents is that their child may not be able to participate in the activities that brought them joy, helped shape their character, or created life-long friendships. Playing a musical instrument, joining the cheerleading squad, or participating in a sport would fall into this category.
Rites of passage. Will my daughter be able to climb the monkey bars at the playground? Will my son be able to go fishing with his grandfather? Will either get asked to the prom? How will they wear a wedding ring?
Children with hand and arm anomalies mostly lead "normal" lives, and they do many of these things. Obviously, the degree of the impairment of the hand or arm will affect what and how much your child is able to do, but so are his level of determination and the extent to which you modify things for him. There are no universals here, since there is such range in the type of anomalies that children have. For some, tying their shoe laces will be very difficult, but not for others; the same holds true for manipulating scissors and opening jars. Most children will have some difficulty with holding the monkey bars at the playground and grasping handle bars on a tricycle.
A Few More Things to Consider:
Watch for things that you may be pushing your child to do - things that may be reflecting your agenda - not your child's wishes. Your child will want to please you and prove that he is worthy of your love by doing these things.
Tools to Succeed
If your child is going to attempt something, give her the proper tools to succeed. Work with her to solve problems creatively; since life will never be tailor made for her, this is an important life skill. Get a sewing machine or find someone who can alter clothes and sports items. Find ways to adapt equipment to your child's needs, rather than expecting her to find ways to adapt her limb use to an inappropriate piece of equipment.
Your Child Doesn't Have to be a Hero
Teach your child that it is OK if he can't succeed at everything. If your child comes home crying because he can't climb the monkey bars, you can respond in one of two ways. You can tell the child that he can 'do anything' and have a prosthesis made to help him grasp the monkey bars (as one family did). Or you can point out that many other children can't climb the monkey bars - and that's OK. Then point out the many things that your child CAN do. Which approach will lead your child to develop a healthier attitude towards life?
© 2004. Laura Faye Clubok, MS, OTR/L, On The Other Hand Therapy.
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