Our children who are affected by disability 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.
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.)
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.
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.
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.
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.
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!
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.
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, or how they talk, think or move 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.
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.
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.
Regardless of a child’s developmental level, she should be allowed to exercise appropriate control in her situation. Involving our children in the decision making process gives them the tool of control.
Children need to know exactly what to expect and what not to expect from what ever interventions they need. For example - the child who is born with a cleft, and later has a repaired cleft, needs to know it wont be fixed 100%, surgery always leaves scars but that’s completely acceptable. An expectation of perfection regardless of whether your child has a physical, emotional or mental disability is problematic, it sets our children up for a sense of failure if they aren’t a hundred percent recovered. One of the soundest tools in a child’s work box would be realistic expectations.
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.
A Healthy Perspective of the Disability
Our children need to see their disability 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 their disability is labeled a “bad thing” then your child will forever feel victimized.
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 the same or similiar condition. Letting them know persons of celebrity status who faced similiar 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.
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.
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.
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.
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 that no matter how many times the parent hears the individual concerns of the teacher, the therapists, the doctors - the parent must remind those involved that we are working towards the betterment of the whole child. They must understand that they are dealing with a WHOLE little spiritual being in human form - not just deficets and body parts - and that they must behave accordingly.