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What's in a Ph. D.?

About Professionals

I'd Rather Be Anywhere But Here

Look Through the Windows of My World

Through Other Eyes

Will the Real Professional Please Stand?

Why Should You Listen to Me?

What's in a Ph. D.?

The people who hold ph. d.s probably all want to stone me and run me out of town at this point. They’ve no doubt got example after example of what does go into a Ph. D. I understand about the time, energy and commitment that go into acquiring an advanced degree. Even an associate degree is nothing to be sneezed at. I  greatly admire all those who have degrees. However, all the "book larnin’" in the world will not bring you to the places parents of children with special needs have been.

I’ve always said we earn our degrees the hard way; a crash course through forced personal experience, with no breaks, no grades, no good teachers, miserable pay, and no choices. Its a sink or swim situation. When experiences touch you as deeply as many of ours do, they leave impressions and teach us valuable lessons. Our learning is not so much what we read or hear, but what we feel. Any parent of a child with a disability can tell you about that gut-wrenching feeling we so often feel.

We want to fix them, take away their pain, even at personal cost to ourselves, but it can’t be done. They are the ones who can’t see, or think like the rest of the world, or hear, or experience any number of differences. We CANNOT shift that unfair burden to ourselves. We must stand back and watch their struggles on a daily basis. While it’s true that, like a death, the pain fades, it only appears to go away. A certain smell, a phrase, a song, or any number of things can bring it back in full force.

About Professionals

My husband says its because professionals can’t, or won’t, believe that parents are smart enough to understand the system. Information is abundant these days, with television, the internet and all the newspapers. People are much more informed than they were twenty years ago. We have access to information that was not available to us before. There are books that teach us how to do just about everything. We are smart enough to learn and understand what is going on.

My girls had a principal in grade school who I was able to get to know rather well. Over time, I feel, we developed a rather good relationship. We were able to stop, step back and try to see the other person's point of view and give it some credence. We both compromised on many occasions and it worked. Of course it helped that she seemed to honestly believe that all kids were worthwhile. She also wasn’t locked into the belief that her way was the only way. She was able to change with the times. Inclusion began for my oldest daughter in her school.

I remember one thing she told me vividly. She said that teachers wanted parent involvement to be baking good cookies and helping their kids with homework, but not trying to become involved in their (the teachers) teaching or how they ran their classrooms. After all, "How dare we even think that we could possibly have any idea how to teach children since we hadn’t attended college specifically to learn how to do that?"  We are only the children’s parents and that is not where our expertise lies. (I’m not sure exactly where they think our expertise does lie.)

I’d Rather Be Anywhere But Here

Stop and think for a moment about conversations you have had with parents.  Do you ever feel that they're not the "best" meetings you have to attend?  Do you ever feel that perhaps the parents are hostile, or that they don't seem to want to be there?  Do you take it personally? Or do you feel that it's just another "nowhere" meeting?  Do you ever feel uncomfortable around parents if they get emotional?  Do you wish they would just stick to the business at hand and leave all that personal stuff out?

My experience as a parent and as a Parent Mentor has given me the opportunity to witness some professional reactions to parents.  One of the most common statements I hear is that " They don't care." The truth is, we care too much.  Another fact is that we'd rather be anywhere else when we have to have meetings with you. It's not because you're terrible people.  You're just doing your job and we really shouldn't hold that against you.  But the fact remains... if our children had been born "typical" we wouldn't even have to know you.

Many times, as I lay awake at night, I think how much easier it would be for me to get along without an arm or a leg than it is to have to deal with a child who receives Special Education services. I'd give up many, many things in my life if only my child would be okay.  I'm sure other parents feel much the same way.  We truly would cut off our own arm to make this problem go away, and in the long run, that would be much easier to adjust to.

I lost a lot of things when I entered the Special Ed arena. I lost my dream for the all-American family.  My kids probably won't be football captains or Homecoming queens.  I also had to give up a whole bunch of time for me, because these kids don't just take up more of your time.  They take up, and influence it in ways you can't imagine. They change it on an ongoing basis.  While you can get away from it all during summer vacation, it's only intensified for me.

So, in all honesty, I have to say that I wish I'd never met you. If I would have never had to have met you, it would mean that maybe my life would be a little more like I'd dreamed it would be. So it's not you I don't want to be around.  It's what you stand for.  The one thing I still have control over is how I act in public.  There are two things that can make me react in ways I hate.  One is the person who thinks my child belongs somewhere else.  As if they chose to be different and don't deserve a typical childhood.  These people start most meetings with a list of all the things my child can't do.  Believe me, you're not telling me anything I don't know deep down inside my heart.  These people make me angry.  They are being paid to facilitate my child's education.  I get to do it for nothing and at a much higher emotional cost.  Usually when I get angry, I show the hostility I feel about the whole situation.  When my emotions get tapped, it's hard to say how much of what I feel is directed at what you may have said specifically, or at the whole situation in general.  You may not even realize that you've made me angry, because single words or phrases may trigger reactions that I don't have a whole lot of control over.  You have to remember that I already might have a history of "bad" encounters to draw from, especially if my child's disability has been apparent since birth.

The other reaction I hate to display is when I get all teary eyed when someone does or says something very nice.  The sad fact is that society has an easier time ignoring our children's problems than they do dealing with them. When parents are faced with a truly compassionate person, it can sometimes be a "so good it makes you cry" type of situation.

Right now, I imagine you're thinking, "Boy, we can't win with this person!" Not so. You can make me feel more comfortable at this meeting- I realize that you can't truly understand the challenges I face.  I've read about breast cancer and aids and child abuse.  I know all the right words, but I don't really understand the emotions people go through when they face these things. I can only imagine the heartbreak these people must feel.  I do understand the heart wrenching emotions I felt when I learned my daughter was blind.  If you could have felt my pain for only a moment when that happened you'd be amazed that I survived it and you'd treat me with a lot more respect.

I think it all boils down to that one word... respect.  If you can respect my position; value me for being able to cope with an impossible, no-win situation, it will mean a lot.  Don't criticize me for not doing as much as I should.  I'm doing what I can and the fact that I'm not locked up in a mental institution is evidence of that.  Tell me what my child is doing well and think of some ways that we can build on that to help in areas that he might not be doing so well in.

Respect my culture.  Realize that geographics, heredity and economical situations might affect my life in ways I don't choose for them to.  We were faced with a situation in the past where the only way, at the time, for us to be able to have health insurance coverage would be if I divorced my husband and went on welfare.  Luckily, we were able to get coverage and it proved to be an option we only had to consider, but we did seriously consider it.  When you're raised to believe that if you try hard enough and if you're willing, to work that it will be all right.- Well, believe me, that's an unbelievably hard situation to face.  I'm not mad at you; sometimes I’m just mad at the world.

When you hear all this talk about team players and collaboration, it's hard for parents, as well as professionals. We each have our own experiences to draw on- We're being asked to dance, but we're listening to different songs.

Look Through the Windows of My World

You can't walk a mile in my shoes, but you can take a short journey with me and I can show you some scenes from my life.  I don't ordinarily open up to strangers like this, but you're not really a stranger.  You're the person responsible for my child's education.  You may be a superintendent, a principal, a teacher, a guidance counselor or a special education director.  It doesn't matter.  I'll probably be discussing things with you sometime during the course of my child's education.  The object of this is not to make you feel sorry for me.  Far from it.  It's to try to help you understand me and my child.  If you can understand something about the places I've been, you may be able to understand where I'm coming from today.  So let's get started.  You may learn something.

This first window shows you a death.  It's not a typical death.  We didn't get flowers or have calling hours.  It was a very private affair and not too many people even realized it at the time.  This was the death of a dream.

You see, I always thought I'd grow up, marry and have a couple of "normal" children.  When this death occurred, and it doesn't matter whether it happened when my child was first born , or later, as he began to develop, it's still basically the same.  My whole life changed.  I hadn't planned to have a child who had to use a wheelchair, or who would never be able to hear or see, or "pass" a standard I.Q. test.  I was forced to change my whole outlook on the future.  It may have taken a while to go through all the stages I had to go through to get to where I am today.  There was grief. A lot of that.  There was a lot of denial too.  The doctors had to be wrong.  Maybe the denial came before the grief. I don't really remember.  It doesn't make a whole lot of difference.  I had to get through those two stages before I could accept what had ,happened and learn to accept my child and the limitations he would put on my dreams.  I had to come up with a new dream.

This next window shows me after I've learned to accept my child for who he is.  I've learned to take all the backward glances and tasteless remarks in stride.  I've seen ignorance from some people I used to think were intelligent and I've met some really wonderful people who I never would have known, had my child been normal.  I've had to learn how to make people understand that my child is a child first, with a disability second.

I've seen miracles too.  I've seen the first step the doctors said would never happen and I've seen the light of recognition in my child's eyes when he finallygrasped the "meaning" of something.  And I've seen sunsets you wouldn't believe once I had to really look at them and explain them to my blind child.  What may seem ordinary to you has taken on a whole new significance for me.

I've learned a whole new language too.  It's called "medical-ese".  Doctors tend to speak in words you don't hear every day.  At first, I thought I'd never be able to keep all the terms and isms straight, but I did conquer it and I speak it fairly fluently now.  I'm beginning, to learn "teacher-ese" now.  You use a lot of abbreviations and numbers, but I know I can learn your language too, if you'll just be patient with me.  Even though I've accepted my child, this next window will show you my fears for my child's future.  I realize it's going to take a lot more effort if my child is to lead a fulfilling life.  Learning may be difficult for him and in some cases, impossible, but I've really been trying to make his life as normal as possible.  I try to focus on the abilities he has and I try to make him feel worthwhile.

I realize there are some things that my child can't do yet and he may never be able to do some things.  Sometimes, I tend to focus too much on what he can do and not what he can't do, but it helps me and my family.  Some days I seem to be taking three steps backward for every one forward. Maybe I do tend to attach more significance to the accomplishments than I should.

You may only see the bad things about my child.  It may not seem fair to you if you have to spend more time with him or do things differently for one child, when you have a class room full of children who learn things in standard ways.  My child may always be disrupting your class and may not seem to be learning much.  I don't expect you to ignore other students for his sake, but I really don't want him shoved in a back class room with all the other "different" kids either.  He may have to spend some time in a smaller class room with more individual attention.  My goal is to make his life as normal as I possibly can, and being around regular kids helps.  It will take some understanding on both our parts to work this out.  Perhaps some of your brighter students could help my child in some areas.  You'll be teaching them about responsibility and they'll learn acceptance and values that you're not even responsible for teaching.  They'll view children with disabilities as children first and disabled second.  In many cases, they'll learn to accept my child before you will.

As a parent, I know I'm not perfect.  I make mistakes every day.  I realize teachers are only human too.  I also remember the time when some of my teachers were up there with God, in my estimation.  They had such an impact on my life!  It was a shock to find out they led ordinary lives outside of the class room.  I've become more realistic as far as my opinions go.  Your lives probably aren't as worry free or stress free as I used to think and my child may only add to a day that's too full and too underpaid.  If you at least make the effort to try to treat my child as a person, I know how he will view you.  Sit next to God for a while.

My attitude may not be the best you've seen lately.  I may already have had some run ins with the "system" before I ever talk to you.  I may come on too forcefully and seem too demanding.  Maybe I've had to be to get services for my child.  Maybe my sister-in-law has excluded my child and me from every family get together she's had since I've had a "disabled" child.  Maybe my husband isn't supportive.  Or maybe the professionals I've dealt with before have done everything they could to help me.  Maybe I'll assume that you will too, and I won't remember all the hard lessons I've learned along the way.  Or I may remember each one too vividly.  I may be a combination of all these feelings.  Whatever the case, I am just a normal person who wants the best for my child and I'm just trying to make up for the things I feel he unjustly deserves. (disability)

I probably already know that my son won't grow up to be the captain of the foot ball team and my daughter won't be a Home Coming queen, but that doesn't mean that I don't have dreams for them.  I've just substituted other dreams for those I've lost.  We all harbor some pretty unrealistic expectations for our children and I'm no different than any other parent.

If I seem to want too much from you, I don't mean to.  I may have a lot on my mind, or I may not have really accepted the direction my life has taken.  It sometimes takes years for a parent to get to that point of acceptance.  Maybe my pre-planned future keeps intruding, and that's really not too hard to understand when you realize that I lived with that dream for most of my life, whereas I've lived with my "reality" for a lot shorter period.  I may even be feeling cheated because my life seems so different from yours.  There may be a lot of resentment in me, or I could just be tired of fighting the battle.  Maybe I hated driving that old car in, but I decided when my child was born that I'd quit working and stay home with him.  It was where I felt I was needed most.  You may have a better education than me and you may feel more qualified to make decisions about how and what my child will learn.  In most cases, you are the expert and I will (try to) bow to your judgment.  But if you feel I'm realistic and I've accepted my child's limitations, there will be instances when I will know what will work best, and in that case, I am the expert.  I've had an education and have had to learn some things that you should be thankful you've never had to learn.

If you take all the things you've seen through my windows into consideration, you may understand me and my child better.  If we work together, maybe we can do what I pray for each night.  That is to give my child as many opportunities as possible to lead a normal life, in a world that doesn't always seem fair.

Through Other Eyes

I spent some time with a school official the other day.  We carpooled on a trip to Columbus.  This person is a principal at the MR/DD school both my children attended and I have a tremendous amount of respect for her.  She has been there for me as I've advocated for my children to be in the public school system and her understanding of laws has been invaluable.  But as we rode to Columbus, she made an interesting comment, which caused me to really sit back and analyze both our reactions to the meeting we attended on the rules revision.

She said, "The longer I'm in this field, the more I realize that these kids are more like typical kids."

"Big deal, " I thought, "I've known that for a long time." The comment stayed there at the back of my mind though, like many things I hear.  I felt there was some big insight here that I should understand and I think I have begun to understand, to a degree.

Most parents see our children as children first, instinctively.  It's a basic fact for us.  They have personalities, likes and dislikes, fears and loves, as do all children.  Their disabilities become secondary, once we accept and go on with our lives and begin to build new dreams.  When we advocate for them, we expect the professionals to feel as we do about what is possible for them to accomplish.  It may seem to them as if we're looking through rose colored glasses because most of them, even the ones who are so helpful, see them through other eyes.

First of all, they see numbers and labels.  The system forces them too.  Unit funding, minimum and maximum class size, teacher qualification and aides are just a few of the things they have to consider.  Unless a professional has a child of their own who has a disability, they can never really relate to what we see.  They haven't invested the time, nor the energy that we have.  Their futures aren't intertwined in the lives of these children.  They cannot afford to be as emotionally involved as we are and they are not able to live the drama that we do.

Parents don't look through rose colored glasses, but it must seem like we do, especially when we're talking to a professional who is not in favor of what we have in mind for our children before he/she even knows what it is.  All professionals aren't against us, but neither are they completely with us.  Is there any way we can even out the picture?  It might help if we told a few stories and asked some open ended questions when we're dealing with professionals.  Ask what they see for our children and remember that they have been taught to think as they do.  Don't be upset when their views are different than yours.  Work on trying to make them see the same picture you see and don't expect them to understand instantly.  Attitudes are difficult, and sometimes impossible to change.  Good results speak for themselves though, so even if you don't get exactly what you want, don't those rose colored glasses give you cause to believe that your child will?

Will the Real Professional Please Stand?

It doesn't matter  how many letters a person can write after their name. I'm sure its a consideration when it comes to the amount they're paid. I also have to commend them for all the time and effort they've put into attaining that degree. When it comes to the way I'm treated as a contributing member of a team to make decisions about my child's education and welfare however, the letters don't mean diddly squat.

I've found "professional" people who didn't have all the titles to go with their names who treated me in a very professional manner. The following lists how a good professional acts.

1. They don't make judgments about me based on what other people say.

2. They come to meetings on time.

3. They don't talk about other cases during their meeting with me.

4. They don't reject my ideas.

5. They don't assume my child can't learn.

6. They recognize my child's strengths.

7. When giving me bad news, they do it tactfully and with compassion and in a private (if possible) place.

8.  They don't have to take time to read through their files at the meeting to find out who the meeting is about.

9.  They don't assume that their way is the only way.

10. They don't try to force issues.

11. They will admit they're wrong, or that they don't have the answer.

12. They don't pretend to have experience or know how to deal with an issue if they don't.

13. They are flexible.

14. They don't try to rush through a meeting.

15. They don't continually glance at their watch.

16. They are honest with me.

17. They are aware of my rights and they let me know what they are.

18. They don't try to impress me with their titles.

19. They don't resent my input.

20. They truly care about children.

It may seem that all professionals would act in this manner, but it's one of those sad facts of life that they don't. One of the most professional people I know is Krystal's aide. I have no idea what amount of education she has, but the manner in which she treats me is respectful of me and Krystal. She's very contentious and kind. I think kindness, the kind that is genuine, is one that all people who deal with the public should have.

Krystal's pediatrician is also a person who treats me with a great deal of respect. He always gives me credit for being able to care for her. He would let me choose whether to hospitalize her when it wasn't too serious. He follows up on all the questions I ask him and he will admit to not having all the answers.

Both of these people act professionally. If either of them made a suggestion that I found questionable, I would have to question MY reasons before rejecting it. I'd probably do what they suggested because I don't have all the answers either. They both have given me reason to trust them.

Why Should You Listen to Me?

How did I come to this decision, you may ask.  What qualifies me to say "I know better, than you, a trained professional?  Well, my life has taken a lot of twists and turns over the last few years.  I've traveled roads that seemed to lead to nowhere, and I've had to take a lot of detours.  I've actually visited places that you only dream about in your worst nightmares.  But more important than the hard times I may have had, I'm this child's parent.  Whatever decision you make, it will have an impact on me.  It will have a more beneficial impact if we can agree on the decision.  But if we don't or can't agree, it may not be in the best interest of the child.

I know you may think my decision is an unwise one, but I didn't make it lightly.  I lost many a night's sleep weighing the pros and cons involved.  The problem seem to be that either way I go, I will have to make compromises and give up some things.  I just happen to feel that the things I will have to give up if we do it my way are things that I can live more comfortably with.

Sure, I realize that you're a trained professional.  I know you went to school specifically so you could do this.  The books may have told you that your way is the right way.  I didn't go to school to learn what I've learned.  The need to learn it was just sort of there one day.  Just say I took the crash course.  You learned the easy way... by choice and with plenty of time.

Just let me ask you one question.  Have you ever had to live with the results of the decisions you've made in your job?  Have any of the decisions you've made affected your daily life?  Have you ever considered that what the book said may be wrong in any given case?

This child will be living with this family long after you have moved on to another position or when we move on to the next program.  The basis for continuing experiences with other professionals will be influenced during my experience with you.  You can respect and value the impact I will have on this child and help me to build on the strengths that I have, or you can make me feel as if my concerns and ideas don't matter.  You have the privilege of making it easier for me and for yourself and for your colleagues who will follow.  I don't like the reasons we're here.  If I had my way, Id just as soon not be here with you.  It would have been a whole lot easier if I had a child who didn't require your services, but it's not as if I have a choice.  It is your decision whether to include me as a valued team member, or to make me feel inadequate to do the job I have been given as this child's parent.  So stop for a moment and think of the tasks I have before me.  Try to put yourself in my shoes and treat me as you would like to be treated if the situations were reversed.

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