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The Reality Bust

To Fight the Endless Battle

It Isn't Easy

What Society Says

I Want to Ride a Bike

Another Monday

My Pain, Your Pain

The Reality Bust  

When my children entered grade school, reality set in. It took me quite a while to recognize that the I wasn't in the protected environment of Early Intervention. and preschool anymore. My children were some of the first to receive E I services in our county. Krystal was part of the very first preschool class. Although Id had some disagreements with people Id dealt with during those first five or so years, they hadn't been anything to really worry about.

Kindergarten for Kimberly had begun while she was at the MR/DD program, which is where she also attended preschool. The principal at MR/DD was always willing to listen to my concerns and to share her thoughts with me. I don't know if she truly thought Kimberly would be better served in her home school, or if she just respected my wishes. At any rate, she was a tremendous help at getting Kimberly moved from the MR/DD setting to her home school.

Kimberly entered Kindergarten in the middle of the year, going all day, every day in  1991.  The other children attended every other day. ((check date)) She repeated Kindergarten in full the 1991-92 school year. She wasn't identified to qualify for special education until she entered the first grade.

By that time, she had been identified as having autistic behaviors. Although the teachers in the school were unfamiliar with autism, we did receive some pretty good services from many of them. Some of them made more effort than others to find out about autism.

I have to say here that Kimberly didn't display all autistic behaviors, but more often than not, her behavior was more autistic than any other. I'm not sure people have always agreed with me on that issue, but its my belief that the teaching strategies used for autistic children have benefited her.

Krystal attended Kindergarten three days a week at the Visually Impaired unit in another school about twenty-five miles from us. She attended her home school the other two days. I received a good deal of opposition to that that year. I believe they spent more time trying to convince me to send her to the VI unit than they did trying to accept her. I truly felt that both of my girls belonged in their home school.

Many of the professionals I dealt with in those early years felt otherwise. Although inclusion was the new thing at the time, it only gave me ammunition to advocate for what I probably would have done anyway. I never did feel that the accidents of birth that had caused my children to have problems was any reason for them to be separate from other children.

To Fight the Endless Battle

My kids are both in inclusive classrooms.  The school remains open to me.  I'm welcome to come in anytime I please and I don't believe they intentionally lie to me.  If they call me the parent from Hell, they've kept that fact from me.  It's more omission of the facts and the laws that hinder me.  Therefore, the roadblocks.  They still exist and I still have to overcome them.

Whether they're intentional or not, doesn't matter, because I honestly feel I know more about special education laws than most of the professionals.  I know positively and without a doubt that I do know more about the outcomes of the laws because I've seen the effects firsthand.  I live with the outcomes the decision makers are responsible for.

I know about the difference between the "visible" disability and the "invisible" disability because my children have managed to have disabilities that encompass both categories.  God has decided that I need my character built, but I think he's gotten carried away with the degree to which he wants to improve it.  Someone should tell him that an apple tree cannot grow roses, but that's a whole different subject.

What matters in this narrative is how I got here.  The never ending quest for equality that I've fought for my children for the past six years.  And the battles I've won.  They are significant victories too.  Sometimes, when I've had an extremely bad day, (or week) the successes are all that have kept me from succumbing to the pits of despair.  So, my purpose here is to explain how I've managed to get to where I am today so that others will know how to avoid the pitfalls I've encountered and mostly, so they will be able to say, "This has worked.  This is what we need to do to make it happen here," to a professional who says, "We simply don't have the resources to do what you ask."

I can't take all the credit for my successes though.  I'd have to say that I was "set up" to succeed.  My children's Early Intervention teacher believed in us.  She treated me as a valuable resource rather than an interfering parent.  My first attempts to be involved weren't discouraged.  Rather, they were encouraged and I was lucky enough to go right into the preschool program and find another teacher just like the first.  The principal at the MR/DD facility where both my children attended Early Intervention was supportive of my wish for inclusion.  She helped with advice and moral support to take the leap into regular education.  I also found a "regular" preschool for my blind daughter and I saw that an ordinary teacher could be extraordinary, proving that the best teachers in the inclusion movement simply are the best teachers.

A little background here... My oldest, Kimberly, who is eight now, is adopted.  We got her at 16 1/2 months old, knowing that she was classified as a special needs child.  We were young and naive at the time though and didn't realize (or wouldn't admit) that her problems were due to anything more than lack of love and stimulation.  She was six years old before the diagnosis of high functioning autistic was reached.  The delay in her diagnosis was partly due to the arrival of her sister at 23 1/2 weeks gestation, weighing in at a whopping 1 pound 2 ounces on Kimberly's second birthday.  We were otherwise occupied with more pressing matters to concentrate on as much as we should have on her.

When the heavyweight came home, after nearly six months at Children's Hospital, we were still more involved with her than Kimberly.  But Krystal also brought an apnea monitor, oxygen and numerous prescriptions to be administered daily, so it was more than the average baby brings home from the hospital.

Kimberly progressed, even though we had to deal with the death of my Father, plus the news that Krystal's retinas were completely detached.  She was blind.  Not Ward and June Cleaver's life by a long shot.

Two factors are important for my success.  First, as I said, I was "set up" to succeed.  Good people were my first contacts.  The second was my conviction that life was not going to be easy for my youngest, given her blindness and other related problems.  I stifled the urge to keep her in a glass bubble and we exposed her to life, just as if she'd been a normal, sighted child.  We treated her as a normal member of the family.  It was her right.

This belief, ingrained so deeply in me, has stood the test of time.  Because we see and treat her as normal, it's inconceivable that others should treat her any differently.  I will go to the mat for her when her right to a normal childhood is denied.  When Kimberly finally received her autistic diagnosis, it was easy, no, normal, to expect the same for her.

So, we're back to the road to inclusion for my two children and how I got there.  As I said, the principal at the MR/DD school believed that Kimberly would benefit by attending her regular school.  Even though she had attended the preschool at the MR/DD program, this principal was an advocate for me.  Kim was in regular kindergarten for a year and a half.  

The battle would have been much harder for me if I hadn't had so much support from my childrens' earliest teachers. I might easily have given up, or compromised my positions without those people who encouraged me to fight for my beliefs. Although the federal laws are there to ensure that our children receive a Free Appropriate Public Education (FAPE) , it wont happen in many cases unless the parent is aware of the law.

It Isn't Easy

Being the parent of a child with special needs sure isn't easy.  It's hard work to make our children appear acceptable to the rest of the world.  We don't dare confess how hard some of our days are, because then it would be too easy for all the people who deal with our children to say, "It's even hard for this child's parents to deal with him/her."  So, we learn to smile, when we'd rather grit our teeth, and we answer questions patiently, even if they're stupid.

Some days it would be nice if we could be totally honest with everyone and tell them just how difficult our days really are, but I'm sure we'd all be committed, plus, we'd never be asked how our days were again!  Wouldn't it be nice to be able to say, "I'm so sick of my child controlling my life," or "I wish my kid was normal." But these words are definitely not what people want to hear, nor are they words we could say without feeling pangs of guilt for days afterwards.  The cold, hard fact remains though.  We think them and because we think them, we feel stressed out because we can't say them.

When you're fighting for inclusive educational settings, like I am, the last thing you want to do is admit that your child is difficult to spend a whole day with.  You don't want to demand that they get special treatment, because, after all, you're also asking that they be treated just as the typical kids are.  Deep down though, you know that they do require more attention, more patience, more of just about everything.  But you also know that the time and energy you give them is demanding and not everyone is capable of being as diligent as you are.  You won't always be there for them so they have to learn to survive in the normal world, even if it can be a cruel place.  Add that to the demands they place on you and you've got a lot to deal with.

It would be nice if people understood what it's like for us, but that's not something that can be easily understood.  We wouldn't understand it if we didn't live it.  So it's really impossible for others to understand if they haven't been through it. Many people might say they understand, but so much of the time that phrase is simply empty words.  I don't doubt that the people who say them don't think they do mean them.  But the fact remains... twenty-four hours a day, day after day can only be understood after you've pulled about three months worth of them yourself.

So, it seems as if parents of children with special needs will always have this extra burden to bear.  We'll always be expected to be smiling and upbeat if our children are to be accepted.  We'll always have to downplay the stress and demands they put on our lives.  We'll always have to go that extra mile to ensure that they are included.

But, on the upside, we're providing some positive models for our children to follow.  Whatever your child's problem, much of what they learn is from the parent.  And some of the most important things are implied, rather than taught.  You don't teach attitudes, you live them and your children absorb them.

What Society Says

People always make over babies. Babies are lovable no matter what disability they might have. When they're little and just beginning to get into things, its just so cute! However, kids get older every day. The child who had such an indomitable spirit at two or three suddenly becomes "aggressive" at six or seven.

      The child who wasn't quite up to par mentally at an early age begins to be an embarrassment when they get older. Peoples tolerance seems to diminish as our children get older and our tolerance to their attitudes becomes non-existent at times.

(NEED TO FINISH) 

I Want to Ride a Bike

My oldest daughter, Kim, age 10, was recently evaluated by Occupational and Physical Therapists who said she would never be able to coordinate hands, eyes and feet to be able to ride a bicycle.

My gut instinct told me that this must be a mistake.  I thought about it off and on for almost a year.  The idea of getting her a bicycle grew and really took root.  So... for her birthday this June, I took the plunge and bought her a bicycle.

She pushed it around for a few days and sat on it a lot.  She even put her feet on the pedals.  I knew I had to provide some incentive, so we took the show on the road. (Literally!  Of course we do live on a dirt road.) The going was tough.  She just wasn't sure she could trust herself I pushed a bit and she finally began to pedal.  And then she was off! Talk about a proud little girl!  Talk about a proud mother!

This was one of those times when I really felt strongly that the professionals might be wrong.  I have to say that the day she was evaluated, I could see why they came up with the conclusions that they did too.

But one factor was missing.  Incentive.  With incentive, our kids can do things the tests say they can't.  If we can make them want to do it, they'll find a way.  We just have to find the incentive to make them want to try hard enough. Kim is now a fairly decent rider.  My instinct paid off.  I just have one tiny problem.  See, I also bought a bicycle for her younger sister, Krystal, 8, who is blind. (Call me an optimist!) How do I get Kim to act as a guide for Krystal?  There isn't much of a seed for incentive to grow there, but I can't keep running along side for too much longer!!!

You might think that its all a matter of learning how to cope. To a certain degree, it is. There definitely are strategies you have to learn in order to survive. And you do apply these skills.

Another Monday

The bus has stopped at my house three days this week. Logic tells me that it must be Wednesday, but the way things are going, it sure seems like Monday!

The parakeet was dead this morning, the baby sitter called and said she was moving to Texas on Friday. (I knew I should have hired the second one I interviewed.) My youngest is still saying she has the flu because her left shoulder and her stomach hurt. (?) I found a thumb tack under the mattress of the kids bed, (it's a waterbed) and some of the things in my refrigerator are not only growing but beginning to move and form communities.

The swimming pool is still up, the dog has fleas, the vacuum cleaner wants a new job description as a coat rack and my oldest used the last roll of toilet paper to wrap up the cat.

My kids do have their problems.  My husband doesn't understand me.  The phone rings off the wall at the most inconvenient times.  The world is not an oyster.  I don't have all the answers.  Monday, Monday.  The world goes on.

Tomorrow will be another day. (I hope it's not a Monday!) My kid's will still have their problems.  I can hope that Texas will disappear so the baby sitter will have to stay.  But as I sit here and ponder the situation, I realize that my life is happy.  I can laugh about things.  I can remember when laughing was not a part of my day and I can tell new parents who have children with disabilities that their days will improve.  They too will have days when their biggest problem is that it seems like their third Monday that week.  Days when the differences are minor.  Days when they forget that their children are different because life does go on.  We survive.  But, if I don't go and get that refrigerator cleaned, I may have a mutiny on my hands!

My Pain, Your Pain

Sometimes I want to run to the top of the highest mountain and yell loud enough for the whole world to hear, "Look.  I made it.  You haven't beat me yet!" I don't know what feat that would accomplish. Probably, no-one would stop what they were doing to listen.  They've all got places to go and people to see.  I might feel better for a moment or two, but I know it won't help me get to the end of the journey any quicker, because I know from experience that this mountain isn't the last one.  Now that I'm up here, I can we that there are even higher mountains yet to climb.  I wasted a lot of energy running to the top of this one, which means I'll have to slow down a bit to catch my breath.

As I look back, I see all the new people beginning this journey.  They're carrying their banners, flaunting their outrage, proclaiming their grief, screaming their agony...

I remember when I began this journey... I was just as boisterous as they are.  The emotions inside of me, were just as turbulent as theirs are.  I can feel their pain and it hurts.  And I want to help, but some things take time.  When they are ready, I'll still be around.

I'm still carrying my banner just as they are, but mine's much smaller and more manageable now.  I know I have to carry it every day and I can't afford for it to be so heavy that I'm unable to manage it.

My outrage is still there, but I've learned not to flaunt it.  Outraged, angry parents are seldom given the opportunity to do much of  anything since they're so emotional and unstable.  My anger is still there, but it's a different kind now. Ill always be angry about the injustice of my child having a disability, but I've learned that ~being angry at the whole world takes too much energy. Directing my anger in productive ways at specific things that can be changed is more productive and less taxing.

And my grief is much more, private now.  My grief and the, guilt I may feel over what I have and haven't done... It's not a popular emotion to wear to parties and meetings.  People tend to mumble their condolences and move on to a less depressing person.  I may not show it but its always here inside my pocket.

Then the agony.  Ah, yes that constant thread that permeates our lives.  Whether it be back-wrenching or soul-jerking, my scream remains.  I've just learned how to control the volume.  It may be silent now, but its also constant.

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