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Above Inspirational Messages from About.com's Love Notes for Special Parents

http://specialchildren.about.com/od/needinspiration/ig/Notes-of-Encouragement/

The Misunderstood Child


I am the child that looks healthy and fine.
I was born with ten fingers and toes.
But something is different, somewhere in my mind.
And what it is, nobody knows.


I am the child that struggles in school,
Though they say that I'm perfectly smart.
They tell me I'm lazy - can learn if I try
- But I don't seem to know where to start.


I am the child that won't wear the clothes
Which hurt me or bother my feet.
I dread sudden noises, can't handle most smells,
And tastes - there are few foods I'll eat.


I am the child that can't catch the ball
And runs with an awkward gait.
I am the one chosen last on the team
And I cringe as I stand there and wait.


I am the child with whom no one will play
- The one that gets bullied and teased.
I try to fit in and I want to be liked,
But nothing I do seems to please.


I am the child that tantrums and freaks
Over things that seem petty and trite.
You'll never know how I panic inside,
When I'm lost in my anger and fright.


I am the child that fidgets and squirms
Though I'm told to sit still and be good
Do you think that I choose to be out of control?
Don't you know that I would if I could?


I am the child with the broken heart
Though I act like I don't really care.
Perhaps there's a reason God made me this way -
Some message He sent me to share.


For I am the child that needs to be loved
And accepted and valued too.
I am the child that is misunderstood,
I am different - but look just like you.


©Kathy Winters 2003
 

A Trip to Holland

By Emily Perl Kingsley

 

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans…the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy.

But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
 

HOLLAND SCHMOLLAND

By Laura Krueger Crawford
 

If you have a child with autism, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this: Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives. You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides and gelato. However, when the plane lands you discover, much to your surprise, you are not in Italy - you are in Holland.

You are greatly dismayed at this abrupt and unexpected change in plans. You rant and rave to the travel agency, but it does no good. You are stuck. After a while, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in wooden shoes, the French fries and mayonnaise, and you think, “This isn't exactly what I planned, but it’s not so bad. It’s just different.” Having a child with autism is supposed to be like this - not any worse than having a typical child - just different.

When I read that, my son was almost three, completely non-verbal and was hitting me over a hundred times a day. While I appreciated the intention of the story, I couldn't help but think, “Are they kidding? We are not in some peaceful countryside dotted with windmills. We are in a country under siege - dodging bombs, trying to board overloaded helicopters, bribing officials - all the while thinking, “What happened to our beautiful life?”

That was five years ago. My son is now eight and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created… well… our own country, with its own unique traditions and customs.

It’s not a war zone, but it’s still not Holland. Let’s call it Schmolland.

In Schmolland, it is perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end to end. You can show affection by giving a “pointy chin.” A “pointy chin” is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person’s shoulder. For the person giving the “pointy chin” this feels really good, for the receiver not so much – but you get used to it. For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion.

If you are sad, you can look downcast and say “Oh Pongo.” When mad or anxious, you might shout, “Snow can’t stop me!” or “Duchess, kittens, come on!” Sometimes, “And now our feature presentation” says it all. In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00am, are all traditional Schmutch pastimes.

The hard part about living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we argent always successful. It’s perfectly understandable that an 8-year-old boy from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year old out of the store kicking and screaming while all the customers look on with stark, pitying stares.

But we ignore these looks and focus on the exit sign because we are a proud people. Where we live, it is not surprising when an 8-year-old boy reaches for the fleshy part of a woman’s upper torso and says, “Do we touch boodoo?” We simply say, “No we don't touch boodoo” and go on about our business. It’s a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings. And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland who insist that the pants must come off no matter where they are, and regardless of whether another pair of pants are present.

Other families who are affected by autism are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking with a person from Norway, (or in our case someone from Schmenmark talking with someone from Schmorway), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions.

“Oh your child is a runner? Mine won’t go to the bathroom without asking permission.” “My child eats paper. Yesterday he ate a whole video box.” “My daughter only eats 4 foods, all of them white.” “My son wants to blow on everyone.” “My son can’t stand to hear the word no. We can’t use any negatives at all in our house.” “We finally had to lock up the VCR because my son was obsessed with the rewind button.”

There is one thing we all agree on: we are a growing population.
10 years ago, 1 in 10,000 children had autism.
Today the rate is approximately 1 in 250.


Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic pre-disposition has collided with too many environment insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous systems of developing children. One medical journalist speculated that these children are like the proverbial “canary in the coal mine” here to alert us to the growing dangers in our environment. While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what “could be” to “what is.” I look around at this country my family has created, with all its unique customs, and it feels like home. For us, any time spent “nation-building” is time well spent.

By Laura Krueger Crawford
 

 
Mothers Lie

By Lori Borgman


Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.


She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.

She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible.

That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.

Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.

Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.


Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go, her latest humor book now available wherever books are sold.

‘Just for this day’

By Sally Meyer

Just for this morning,

I am going to smile whenever I see your face, and laugh when I feel like crying.

Just for this morning, I will let you wake up softly, all rumpled in your flannel pyjamas, and hold you until you are ready to stir.

Just for this morning, I will let you choose what you want to wear, and smile and say how beautiful you are.

Just for this morning, I am going to step over the laundry to pick you up and take you to the park to play.

Just for this morning, I am going to eat a huge breakfast , with bacon, eggs, toast and waffles, and you don’t have to eat any.

Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that 100 piece puzzle together.

Just for this afternoon, I will unplug the telephone and keep the computer off and sit with you in the garden blowing bubbles.

Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.

Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.

Just for this afternoon, I won’t worry about what you are going to be when you grow up or who you might have been before your diagnosis.

Just for this afternoon, I will let you help me bake cookies, and I won’t stand over you trying to ‘fix’ things.

Just for this afternoon, I will let you put all kinds of barrettes in my hair and lipstick on my face, and I will tell you how pretty you have made me look.

Just for this afternoon, I will take you to McDonald’s and buy us both a Happy Meal, so that you can have both toys.

Just for this evening, I will hold you in my arms and tell you a story about how you were born, and how much we love you. Just for this evening, I will let you splash in the bathtub and not get angry when you throw water over your sister’s head.

Just for this evening, I will let you stay up late while we sit on the porch swing and count all the stars. Just for this evening, I will bring you glasses of water, and snuggle beside you for three hours, and miss my favorite show on TV.

Just for this evening, When I kneel down to pray, I will simply be grateful for all that I have and not ask for anything.

Except just one more day.

"For Dhylan"

~ Copyright Sally Meyer 1999 ~

For more poems by Sally Meyer, click here

Ten Commandments for Parents of Special Needs Children



1. Take one day at a time, and take that day positively. You don't have control over the future, over today, or over any other day, and neither does anyone else. Other people just think they do.


2. Never underestimate your child's potential. Allow him, encourage him, and expect him to
develop to the best of his abilities.


3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.


4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.


5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.


6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.


7. Be honest with your feelings. You can't be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.


8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.


9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.


10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.


11. There is no 11th, silly. (See the 10th).

 

The Special Mother

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew."

"Forrest, Marjorie, daughter. Patron Saint, Celia."

"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it."

"I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive.

Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.

I will permit her to see clearly the things I see: ignorance, cruelty, prejudice--and allow her to rise above them.

She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles.

"A mirror will suffice."

-Erma Bombeck

Heaven's Very Special Child


A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above --
This special child will need much love.
Her progress may be very slow
Accomplishment she may not show.
And she'll require extra care
From the folks she meets down there.
She may not run or laugh or play
Her thoughts may seem quite far away
So many times she will be labeled
'different,' 'helpless' and disabled.
So, let's be careful where she's sent.
We want her life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they are asked to play.
But with this child sent from above
Comes stronger faith, and richer love.
And soon they'll know the privilege given
In caring for their gift from heaven.
Their precious charge, so meek and mild
“Is heaven's very special child."


©Edna Massimilla
 

The poem is very moving, and I'm pleased to reprint it. It was written 50 years ago by Edna Massimilla of Hatboro, Pa., the widow of a pastor, when their daughter, a child with Down syndrome, was born. (She is now with the Lord.) When I spoke with Edna, who was 90, she explained that she wrote the poem to emphasize that every creation is for a purpose, and she's still writing poems and songs especially for children with disabilities.

-Dear Abby
 

(See related article here)