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This one is about: The Tools We Give Our Children

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The Tools We Give our Children
     by Joanne Green

Our children who are cleft-affected, face life with a few more challenges than most other people -- and to meet those challenges, perhaps they need a few extra tools in their tool boxes. And so we, as a group - parents, and particularly cleft-affected adults - together compiled a list of the unique tools our children need in order to build a strong and healthy life.

And so, here it is - the compilation:

The tools for our children's work bench would include:
1) INFORMATION!!!!!! -- How can they deal with any issue they know nothing about? They need to be given information in a form they can understand -- and that means age-appropriate language. (This is not the same as "age appropriate concepts", as a child is pretty capable of handling almost any information as long as it is presented in a way he or she understands it.)

2) LANGUAGE -- A child has to have the words to tell you how he or she feels inside. Many times children fail to communicate a hurt simply because they don't know how to label it. Joey's expression, "it hurt my heart" when a little girl in his preschool class made a comment about his lip was a good example. He groped for words to express to me how another child's words made him feel. What, though, if he didn't have the language to express that?? Children recognize abstract concepts at a very early age, but it may take a while longer for them to develop language skills to label those concepts - - unless we help them.

3) TRUST -- A child must have someone in their lives that they can trust with their feelings and insecurities. If a parent always invalidates a child's words ("what do you mean nobody likes you??? EVERYBODY likes you - - now go on out and play!") then the child will not trust that parent with their deepest fears. Sometimes the hardest thing for a parent to do is to hear their child.

4) OUTLET -- It's hard to bottle up unspent energy, and fear and anger are huge energy-generators. We need to allow our kids to cry, or to yell, or to find some way to release that energy in a way that will be healing to them. For some, it could be art. For others it could be acting. Still others may find an outlet in sports. Some may just need to yell for a bit. They need this chance to release - - and sometimes we have to guide them toward a socially appropriate way to express it, yielding the most positive outcome.

5) ALTERNATIVE -- Everybody is "best at" something -- even if it is only personal best. Our kids need positive alternatives on which to spend their energy. Our kids need to hear when we are proud of them -- they need to see the light spark in our eyes when we recognize a job well done. Jessica, for instance cannot talk (apraxia) and she cannot write (poor fine motor - again, apraxia) but the day she brought her reader home to me and "read" it to me herself, she and I BOTH celebrated, and my girl felt like a million bucks. SHE DID GOOD!!!! and she knew it. Find your child's positives and never fail to point them out.

6) POSITIVE SELF-AWARENESS -- Most people can point out what is WRONG with them, but how many of us feel comfortable identifying what is RIGHT? Our kids need to be able to counteract the negatives with known positives. We need to help our kids find their strengths - - not tell them their strengths -- help them find them. That way, when we are NOT there to point them out to them, our kids can still identify what is RIGHT and good about themselves.

Social Phobia (a natural outcome of a negative self image ) is definitely a dragon that we need to help our children slay - early -- while it is still nothing more than an annoying little lizard.  With the proper tool, our children WON'T let it grow to a disabling condition!

7) SUPPORT SYSTEM/LOVE -- So many things can be accomplished in life (or pulled through) in an atmosphere of unconditional love. The knowledge that someone loves and accepts you through it all makes you realize that you are worth loving.

8) FOUNDATION (OPENNESS, HONESTY, LOVE) -- Nurture, love, support, your child. Talk honestly, welcome questions, and even welcome fears. Welcome these things with openness, love, and most of all HONESTY. Don't lie to your child. Nurture them and tell them the truth.  No, it shouldn't matter what a person looks like on the outside, but in all honesty sometimes it does. And once in a while, that person appears, bringing with him all that ugliness. Only a foundation of openness, honesty and love will prepare your child for when that happens.

9) A MODEL OF EXPRESSION -- Facts ARE one thing, but expression of emotion is another. You as parents have the responsibility to open up to your kids. When you are scared, express that. When they are scared, encourage them to express it. When they question, encourage that questioning. Be on the look out. If you don't open to it now, your child will face it later, often when they are on their own.

10) ADVOCACY -- By first advocating for our child, we can teach them how to advocate for themselves. Particularly, we teach them that they have rights, and they have every right to claim them.

11) CONTROL -- Regardless of a child's developmental level, she should be allowed to exercise appropriate control in her situation. Very young children can choose what to take to the hospital -- which parent will spend the night -- what foods will be included in the liquid diet. Older kids can take more control. When will the surgery be scheduled? What sort of anesthesia will be used to go to sleep?  Will she have this particular surgery at all? Involving our children in the decision making process gives them the tool of control.

12) REALISTIC EXPECTATIONS -- Children need to know exactly what to expect and what not to expect from each procedure. Surgery leaves scars -- always. The child is born with a cleft, and later has a repaired cleft. It's not perfect, but it's completely acceptable. An expectation of perfection sets our children up for a sense of failure. One of the soundest tools in a child's work box would be realistic expectations.

13) ATTITUDE -- A positive attitude begets a positive attitude. And that, in turn, helps to ensure the best possible outcome. Negativism is a child's greatest foe, and a positive attitude is his greatest ally. Expect the best, and something good is likely to happen.

14) A PERSPECTIVE OF THE DE-VALUED CLEFT: Our children need to see the cleft as neither a good thing nor a bad thing - just a thing -- a part of their lives. It is a part that will touch every area of their lives, but it is only ONE small part of the whole person. If the cleft is labeled a "bad thing" then your child will forever feel victimized. The reality is, cleft happens once in every 700 births, and your child pulled into the seven-hundredth slot. They neither won the lottery, nor did they draw the black dot. They simply were born with a birth condition that requires correction. That perspective will go a very long way in helping your child to handle questions and comments that may come their way concerning cleft issues.

15) COMMON EXPERIENCE -- Knowing at least one other person who faces the same issues you face helps tremendously. You know you are not alone. Parents must seek out ways of making sure their child knows somebody else who was born with a cleft. Joining a support group with other cleft-affected individuals would help. Getting to know others via the internet and listserves such as cleft-talk helps. Letting them know persons of celebrity
status who faced cleft issues helps too. It is so very lonely when you are the only one you know. And so refreshing when at last you meet another.

16) A SOCIAL OFFENSIVE -- Teach our children to be the one that others look up to - the one who has the good ideas - the one who initiates the fun activities. Teach our children to be PROactive in their social development, and not REactive - hoping that somebody notices them for all the right reasons.

17) VALIDATION -- We need to validate for our children that their loss is real, and that they have a RIGHT to feel angry, sad, or even confused. They have, after all, suffered a valid loss.

18) PERMISSION -- Our kids must have permission to feel what they feel -- to express what is really going on inside of them, and not what they believe we want them to say. Teaching our children to "be calm, be still, be placid" is teaching them to bury their fears. And fears have a way of rising from the dead to be even MORE fearful later on. They have permission to be scared. Permission to be angry. Permission to express pain. And permission also, to overcome those difficult emotions. They need to know that even if others do not understand their experience, they will at the very least accept it.

19) HOLISM -- A child is more than the sum of her/his body parts, and all of his/her parts are connected into one body/mind/spirit.  This means, to cite only one example, that no matter how many times the parent hears the surgeon and other professionals say, when talking about their child, "revise THE lip, sculpt THE nose, lengthen THE columella," the parents take care to make it known that their utmost concern is the *whole* child. (Correcting the actual language to "HER lip, HER nose, etc., may or may not be necessary -- it's the underlying attitude that matters.) Communicating this respectful attitude to all individuals who will come in contact with the child -- from anesthesiologist to surgical team to recovery room nurse -- is essential. They must understand that they are dealing with a WHOLE little spiritual being in human form -- not just body parts -- and that they must behave accordingly.

So there you have it - - 19 tools in our children's tool chests. And it is up to us as parents to supply them. Are we up to the task? Well -- we'd better be. Our children, after all, cannot build without them.

Joanne Green
Director and Founder Wide Smiles

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