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I Scream At Night

And Krystal Wants to be a Painter

The Test

Good-Bye Hawaii

The Day I Found Meaning, a Parked Car Hit Me

Professional Parents

Rebels with a Cause

I Scream At Night

It's not appropriate for people to scream in the course of the day, unless you're my seven year old, who scream intermittently just to make sure she still can.  Adults who scream get labeled very quickly.  People avoid us and won't accept our phone calls.... forget about returning them.  When you're a parent, dealing with professionals, as well as your children, can begin to get to you after a while.  I have days when I would like to scream at people all day, but unless I'll never see them again, I don't dare.

All "tips" for parents tell us to dress right, come prepared, know our facts, don't get emotional, etc.  It's a lot to remember and it only adds to the pressures we sometimes feel when dealing with professionals.  I've come up with an alternate set of rules to follow, which I hope will be easier to remember.

1.    STALL, IF YOU'RE NOT SURE - My husband has an annoying trait that he employs when someone is boring him.  No matter what the person might say, his reply is, "Is that right?" When you hear him say that, you know that what you're saying is going right in one hear and out the other.  It drives me crazy when he says it to me. So I say it when I'm talking to someone who might not be saying what I want to hear.  It seems to be a noncommittal statement which gives you time to think and in no way labels you as difficult.  In fact, you sound interested, when in fact you're just stalling.

2.      SUBSTITUTE A GESTURE - Think of your favorite gesture that you only use when people have their backs turned to you, like sticking out your tongue or making a face.  Tug on your ear, sort of absentmindedly, but think you are doing the other thing.

3.      STATISTICS LIE - Remember that statistics lie.  I was told that blind children have more accidents than sighted children by an insurance company.  My daughter is nearly six years old and has never had an accident due to her blindness that required medical attention.  The sighted children they surveyed must live in glass bubbles.  In fact, I think the same people who work for the Neilson Rating system are the only people who ever fill out surveys for statistics just because they know how to. What can you expect from people who sit in front of a television set everyday?  They always take my favorite shows off the air, so I'm surely not going to take their word for anything.

4.    BORROW A FRIEND'S BEEPER - Arrange to be paged during the meeting.  It will give you time to collect your wits and make the professionals wonder what you do.

5.      IMAGINE PEOPLE NAKED - People who do public speaking sometimes imagine their audience naked to overcome nervousness.  If it works in a crowd, why not in small groups?

6.    TAKE NOTES - I don't take notes well if I'm involved in the conversation, but I always pretend I am, even if I'm only making out my grocery list.  Take a tablet and write...... anything.

7.    KNOW WHAT YOU WANT - A couple hundred years ago, there were no cars or trains and people used horses for transportation and horse dealers are notorious for being unscrupulous.  Some professionals are descended from horse dealers.  They will never give you the best deal on the first go round.  If you think what they're offering you is equivalent to a 20 year old sway-backed mare, keep dickering.

8.    YOUR CHILD IS AN INDIVIDUAL - We bought a new television set several years ago.  It was being repaired for something every week.  The dealer finally gave us a different one, but it was the same brand.  It's been maintenance free.  Just because something didn't work for another child with the same disability as yours, doesn't mean it can't.  You are there to talk about your child so keep the subject focused on him or her.

9.    DON'T BE RUSHED UNNECESSARILY - Chances are you don't get paid to go to meetings about your child.  Professionals are being paid for these meetings because it's their job, and they probably chose their vocations.  You have neither option, so don't try to accomplish in half an hour what should require an hour.  Don't be rushed.  Schedule another meeting to finish up if necessary.

 10.      BALANCE YOUR WEIGHTS - A parent of a child with a disability carries a heavy load.  It's like carrying around the maximum amount of weight that you can handle on a barbell daily.  When thing get hairy, it's like adding 40 pounds on one side and maybe 15 on the other.  Not only is it too heavy now, but you're unbalanced.  Learn to delegate responsibility by giving some of that weight to others.  Just remember to put your value and priority weights on first and never give them up.

11.   PLAN FOR ONE YEAR AT A TIME - Professionals can't be expected to make your child their life's work.  When your child enters school, you're talking about a nine month period, so find the people who will be involved with your child for the next 9-12 months who are supportive and work with them.

12.   STAY IN A CROWD - Never go to an important meeting alone, if possible. Not only will you intimidate the professionals with your entourage, but you'll have objective people with you who will remember and understand what was said if you get emotional or out of control. (maybe one of them can take notes.)

13.   NEVER SAY "FINE" or "WHATEVER" - If the meeting isn't coming along as planned and you're really feeling lost, discouraged or disgusted and all you can think about is getting this meeting over with, NEVER, NEVER, NEVER say either of those words.  It's like telling people you're not interested, and if you do say them you might as well lie down and ask everyone to use you for a rug.  Say - "Great," or -What was that?" or anything else.

14.       APPRECIATE PEOPLE - If some people truly support you or go that extra mile for your child, don't go home and tell your husband about them.  Well, you can, but don't stop there.  Let those good people know you appreciate them.  Everyone likes to be told what their good points are and the rewards of remembering them to let them know are tremendous.

I hope you've enjoyed my "rules".  The issues parents deal with are all so heavy and I hope these have made you smile once or twice.  There's just one more I'd like for you to remember... Always wear matching socks.  You're feet might think they're strangers, trip you up and end up hiding in your mouth!

And Krystal Wants to be a Painter

My youngest, who is seven years old and blind, announced today that she wants to be a painter when she grows up. My first reaction was that all too familiar gut-wrenching, sick feeling I get when the realization that she really is blind hits me. I didn't have the heart to tell her she couldn't be a painter because she was blind.
I wandered around the house, more or less moping about the whole thing, when it struck me that a painter isn't necessarily a painter, as in still life or portrait pictures. She could be a painter that painted in textures. Her impression of the world in textures or whatever she chose.

Here I am, thinking I'm one of the worlds biggest advocates for normal lives for special kids, falling into the stereotypical trap of what people can and cannot do. Since I've been doing some serious thinking about how to convince both of my children's teachers that they're more normal than abnormal, the irony of what had just happened was significant.

The ingrained and learned prejudices don't go away just because of one incident, or even a dozen. They are so deeply imbedded in many of us that some of the decisions we make aren't necessarily based on our new awareness of the world of disabilities all the time. If I, a parent, can forget about the need to be creative and innovative, how can I expect her teacher not to forget?

As parents, we have to have ongoing communication with those who teach our children and share our ideas with them. We also have to "stay on our toes" and try not to fall back into the same old traps of setting limits on what our children can do.

I am sometimes amazed at many of the strategies my friends come up with when they are interacting with my children. They do things and explain things differently than I would, but it works. Sometimes I think parents can get so involved that they cant always see the forest for the trees. We're so involved with our kids that we tend to overlook some major areas.

Once I realized how mistaken I'd been about my first reaction, I mentally kicked myself soundly and went back into the living room to tell her that yes, she could be a painter. In fact, she can be anything she wants to be, with a little imagination.

Later the same evening, as I was giving her father a haircut, she said she wanted to learn to cut his hair. I didn't say no, but I will have to give this one some serious thought. But, hey, it's his hair!

The Test

There is a protocol that parents are expected to adhere to when they attend meetings with professionals. Professionals know what to look for at these meetings. I think they have an unwritten code where the parent is expected to score at least 85% before they are taken seriously. Unfortunately, this protocol is not shared with parents. We are expected to know all the right moves and have all the right answers without being told what the moves nor the questions are.

I find this an unfair situation. If we're going to be judged, we at least need to be aware of the fact. When they send out the forms notifying us of a meeting, they should include a checklist that lists how we should act at this meeting.

There checklist might look like this:
· Please be on time, even if we're not.
· Please wear decent clothes.
· Plan to have this meeting over with in half an hour.
· Don't surprise us with new or different goals.
· Agree with us. We ARE the professionals.
· Don't whine or cry.
· Come alone.
· Sign where we tell you to.
· Leave your kids with a sitter.
· Act appreciative of our time.
· Don't interrupt us when we're speaking.
· Never raise your voice.

This may seem like a formidable list, but I assure you, there are ways to comply with most of the criteria. Just do the following:

· Being on time is in your best interest. It's a common courtesy for any appointment or meeting. Arriving early is better because then, if they're late, you have that on your side to remind them of.
· Wearing decent clothes will make you feel more confident and perhaps less intimidated.
· If the meeting ends up with unresolved issues at the end of the half hour, ask if you can schedule another half hour meeting later
· If you have been presented with a preview of the goals and objectives before the meeting (which should be done), make sure that you've mailed your changes to them before this meeting.
· You can always say, "I agree with what you're saying to a degree, but might I suggest.......?"
· Whining or crying is never acceptable. It puts you at a disadvantage and it's embarrassing. Try to avoid doing this.
· Request, in writing to tape record the meeting prior to the meeting. Tell them you don't trust yourself to be able to remember everything that's said. They will probably agree to bringing another person.
· Never, never sign in a space where you're not supposed to! (We're stretching the rule on this one!)
· It's better for you if you can leave your other kids at home. You need to be able to concentrate fully on this meeting.
· It never hurts, and only helps, to thank people for their time. It's another common courtesy.
· Again, common courtesy dictates that you shouldn't interrupt anyone.
· Raising your voice makes you appear unreasonable and you DO want to pass the test, don't you? People tend to respond better to requests made in a reasonable manner.

So, now you know the rules. Although I realize that meetings will get out of control at times and things don't always work out the way you want them to, you now know the questions necessary to ace the test.

Good-Bye Hawaii

I save everything.  I think saving too much is a disorder in its own right, but I don't know what the technical term is.  However, even dedicated pack rats like me have to throw some things out occasionally.

I just watched the garbage man drive away with enough broken and half-ofs to pay for a ten day, all expenses paid, fun-in-the-sun vacation in Hawaii for two.  Those of you who live with children who are hyperactive or who have attention deficit disorder will have no problem understanding what I'm trying to say here.  You probably have your own lost vacation.

My oldest, who has a diagnosis of high functioning autistic, has also been diagnosed at one time or the other as ADD/hyperactive.  She's eight years old now, so we've accumulated quite an impressive "collection" over the years.  There are at least three pairs of cracked, scratched or broken contact lenses, thirteen tangled or broken necklaces, eight or ten containers with eye shadow that had been used as water colors and one broken figurine of a Doberman that my sister paid a bundle for.  There are also four or five pairs of panty hose that were transformed into puppets before ever being worn, eighteen single socks, twenty-seven mutilated earrings, six boxes of broken crayons and fourteen unwound audio cassettes.  Not to mention the 35 millimeter camera that she washed, or the brand new box of computer disks with the pancake syrup on them.  Let's not forget the baby doll parts, the broken vases, the tom sheets or the cut up books either.

If I had thrown all this stuff out as it was destroyed, it wouldn't seem such an enormous amount, but I always meant to fix it or find alternate uses for the "halves".  But somehow, I never got around to doing those things.

Even as I watch the garbage truck drive away, I catch a glimpse of my daughter swinging from the clothes line in my backyard.  Hawaii would be nice, but she is worth it all.  I haven't had to repaint any rooms for the last year. (Probably because all the magic markers have been destroyed.) The sound of breaking glass is heard less often and the progress she has made is remarkable.

Maybe I should encourage the artwork.  She may grow up to be a famous artist and she may send me to Hawaii one day.

The Day I Found Meaning, a Parked Car Hit Me

I guess you're thinking that if I was bit by a parked car, I obviously was doing something wrong. Maybe I was drunk or stoned and only thought I was hit by a parked car. I mean, obviously, its not possible to be hit by a parked car. Perhaps I should title this A Parked Car Hit Me and Then I Found Meaning.  It holds a little more water that way because some unexplained things do happen occasionally.

Maybe I was visited by a strange force and I gained understanding through some divine intervention; or maybe I'm simply touched in the head and just crazy.

Maybe this title is just too undefined.  Perhaps if I had used When the Parked Car Hit Me, I Began to Understand that Strange Things Can Happen.  A little wordy, but beginning to be a bit more believable, wouldn't you say? You still I'm not quite right, don't you? Let me rephrase this again..

Wait, I know how to make you understand; how about I Didn't Believe it Was Possible, but a Parked Car Was Shoved and Hit Me.  Are you beginning  to believe it actually happened yet? Now you know that something that was actually possible happened, and me, as rigid as I can be about some of my ideas, can possibly change my views.  I guess shoved was a key word that I left out.

It's still possible that I made this whole thing up just to see if you would believe me.  Maybe I just want to make you to think that special things happen to me, or maybe I'm trying to find out how gullible you are. Sorry, it is a true story. But who would shove a car? Wouldn't you think that I would notice that a car was being shoved? Or another thought. Just where do I hang out? I mean if parked cars are being shoved around, I must be in a rather questionable area. Sounds like a pretty rough neighborhood, huh? It seems that for every little bit of credibility I establish, another question arises that makes you wonder what kind of person I am.

Perhaps its time to give you all the facts. That's probably what I should have done in the beginning, but I guess I wasn't thinking too clearly. Actually, it happened at a grocery store. (Nothing too questionable about that, is there?) An elderly gentleman was pulling out of his parking space. Not looking, or maybe not seeing too clearly, he backed his car into the car parked next to him. The car he hit was shoved into me. After the incident, I  realized that no-one would believe me, but it had happened. It also made me realize that what people say, although it can sound totally unbelievable, can be the truth.

So what was the reason for this stupid story?  I was trying to make a point about what we hear parents and professionals saying. What may sound completely unbelievable can be true. Given the right circumstances, stuff happens and its not always because of the reasons you may think of first. The moral here is to get ALL the facts before you form an opinion. Or do you still think I might be crazy?

Professional Parents

They don't have a degree to qualify you as a professional parent, but the world of Acadamia would be hard pressed to teach through courses what we've learned first hand.  No college courses, no matter how grueling, could promise to simulate the gut-wrenching fear and pain we have experienced as parents.  Nor could it simulate an experience that would provide a person with the clarity of vision we experience when we face prejudice in its rawest form and all its injustice.

What makes a parent become a "professional" parent?  Initially, we all start by fighting our own battles.  Somewhere along the battle line, we begin to see that others are still where we've come from.  A truly compassionate person has such a capacity for empathy that the pain of all those others is added to our own burden, so we continue to fight the battle, even when our child has passed that stage.  That's where the knowledge we've gleaned firsthand gives us the right to speak for others.  It gives meaning to the heartache when what we have learned can help others.

But, with the right to speak for others comes a tremendous responsibility.  For when we speak for others, our actions become the actions of not just us, but of the masses.  We must realize that others will be judged by what we do and by how we do it.

In the world of disabilities, diversity is a highly valued trait, and one we should embrace by all means.  However, within that diversity must run a common thread of professionalism that will gain respect and cause the movement to advance.  Parents who engage in the role of "professional" parents should have a code of ethics that permeates their actions.  As to what those ethics are, and even though each person will have their own personal values, the actions we take must reflect the bigger picture.  It is not unusual for us to be rather single-minded at the beginning of each battle or cause we fight for. Single-mindedness is a necessary trait because it helps us to focus on what we are trying to change.  Having a definite goal will help deter us from being talked into a less effective solution.  It all seems to point to the methods we use to get to our goal and how much destruction we leave in the wake of our battles.

There are time when systemic, meaningful change can only occur through drastic measures.  However, much of what we change, in order to be permanent and lasting, has to be subtle.  The shift in the way many professionals see and deal with our children can't be made to happen, but must evolve.  We must make believers out of the skeptics and make them believe that it was their idea to believe.

So, how do we do that?  The best advice I ever received about how to get others to buy in to what I believed was, "Give them something they need for nothing." So, we make ourselves invaluable to them by our services and advice that benefits them without causing them to have to work any harder.  If at all possible, we do it in such a way that it seems as if it was all their doing.  We stand on the sidelines as they bask in the glory of what each change has wrought.  On a subconscious level, they might realize that we are responsible, but the lure of the spotlight will, in most cases, combine with the ego and make that a moot point. Always remember to thank them for their advice and help, and preferably in a public manner. Diplomacy. Period.

Although I see this as one of the basics for the professional parent, I have difficulty being diplomatic at times. I'm more inclined to want to cut to the chase or heart of a matter rather than quibble over a sequence of words that lead to a conclusion. Whereas many professionals seem to want to discuss for the sake of discussion, rather than for the sake of reaching a meaningful solution. I try to carefully choose what I stand up for and to always ask if what they are proposing is based on how the real world operates. That's where many of my experiences give me the insight they may lack. And I'm there as their reminder that what they decide actually impacts "real" lives.

One of the pitfalls for the professional parent is that no-one is going to like what you do all the time. Some people will oppose you every chance they can simply because they don't like you. (Or parents in general.) Personal agendas have no place in the lives of professional parents. We cant afford to be baited and become involved in battles of personalities. That's another reason why having a definite goal is important. If you can envision your goal, you will realize that becoming involved in petty personality conflicts will only delay reaching your goal. You then circumvent this person, or your course of action. Its not always possible to do this, but if you do have to engage in personal conflicts, you have to decide:

1. Who will benefit from the conflict?

2. Who will emerge the winner in the eyes of the majority?

3. Is it worth the time and effort to win the battle?

4. How will it affect those who come after me?

Rebels with a Cause

I used to think that God made a terrible mistake when he gave me kids with disabilities.  I remember attending my twenty year high school reunion, drinking too much and making the comment to some of my old friends that anyone of them would have been better equipped emotionally to handle a situation like the one I was in.  They were smart, poised, model citizen-type people and I'm sure they all keep house better than I do.

I'd been smart, but more inclined to party than study.  I'd lived a double life.  Always doing my work, but throwing spit balls the minute the teacher turned his back, and later smoking behind the school and skipping class to go to the beach.  Being on the honor roll during the day, but chugging quarts of beer with the best of them at night.  Passing driver's education with flying colors, but racing my dad's car at night.

Life on the edge.  Silently (sometimes) defying the rules of society, but never outright rebellion.  Wearing hippy clothes, protesting, partying a lot.  Being different.

Now that my kids are in school and I have the job that I do, I'm coming into contact with more and more parents with children with disabilities, who, just like me are changing the system.  I see some commonalties between some of us that are successful . 

• We aren't afraid to bend the rules.
• We're not typical Ward and June Cleaver type parents.
• We've already done our thing our own way, rather than society's way.  
• We've had causes before.  Our cause now, (our kids) is an old familiar friend.
• We're not followers.
• We believe strongly in equal rights.
• We hate oppression.
• We know how to be devious.
• We know how to conform when it's necessary-- How to court the system
• We believe in fun.

The things that got us into trouble when we were in school are serving us well

Many people would and will stick strictly to society's rules, never questioning the wisdom of the people who made them.  We have always, although sometimes silently and in small ways, questioned society's rules and believed in our right to do what we believe is best for us.

We may have been rebels of a sort back in our day, but now we have a cause. (although when you're older and you fight for change, the term somehow gets changed to pioneer.  Wonder what Webster has to say about that?) We're exactly the kind of people our kids need to make their lives better.  We won't sit back meekly when the school says "Johnny should be in Mrs. Smith's special class." We're willing to try new medical procedures if they might help.  We still take chances.  And we teach our kids to laugh.  We know how to follow our dreams and we know how to use guerrilla warfare to infiltrate the systems.  We are still rebels, still doin' our thing but with a reason now.  The best reason in the world.  Our kids.

So, maybe God does have a clue.  He may have known what he was doing all along.

...a story about the joys & fears of raising unique children