Kaitlynn's Place

This is a poem that my mother, Chloe Oliver, wrote for Kaitlynn:

 

I saw you walk the garden path tonight.

You ran and romped as children often do.

You picked a flower and gave to me.

We walked together and you called my name.

You reached and grasped your mother's hand.

Then, in an instant, you were gone

Chasing butterflies and cats and little puppy dogs.

 

I saw you play with friends tonight.

Other five year olds with whom to say:

"Come, let's slide the slide and swing the swing!"

You yelled and screamed with great delight,

Running and chasing each other round and round.

Exasperated, you sat down to catch your breath.

Then, jumped back up to do it all again.

 

I saw you dance the dance tonight.

Wiggling in motion to each beat of the music.

You swayed to the rhythm and sang each line

As I and your mother watched every move.

Then you said: "I'm a star,come dance with me."

And we knew it was true and knew that we must.

So, we all swayed and wiggled and danced and sang.

 

Morning came, and I knew it was a dream.

For in your little chair,you do no such things.

Trapped in a body that will not work,

You sit in your place and watch all the world.

You watch the others and always observe

Every movement, each gesture, and each spoken word.

And I know that you want and desire what I dream.

 

I know that you do and someday you will.

A day will soon come when all is made right.

The earth will be cleansed and the lame will be whole.

And you my dear child will do many things.

No longer bound, your chair will not hold you.

You will walk and expound on all that you know.

No longer will actions be trapped in my dreams.

 

Then, we each will walk the garden path

And we will dance and sing together.

We will take each other hand in hand.

Yes, we will romp and play and learn.

We will do it all together

And we will do it with delight.

Till then,my love, you do it in my dreams.

 

Love,

NANNAN OLIVER

 

 

 

 

 

It is often very difficult for the siblings of special needs children to cope with all that goes along with having a special needs child in the family. Special needs children require an extraordinary amount of attention, care, love, devotion, and share of the family income. This can create difficult and often conflicting feelings for the unaffected sibling such as: 

• Fear of the special needs child dying.
• Jealously, anger and or resentment that the special needs child gets a larger share of family resources and attention.
• Anger over lack of attention or share of responsibility.
• Anger over not being able to go places and do things because the special needs child can’t.
• Embarrassment over the physical and mental differences of the special needs child.
• Guilt over the above feelings.

Sibling rivalry isn’t uncommon, but when one child is labeled as “normal” and the other is “special,” it inherently creates feelings that are emotionally disruptive and detrimental to the family unit. Parents need to be astute on how the siblings are coping with having a special needs sibling.

Watch for the warning signs that your child might not be adapting and coping with having a special needs sibling:

• Eating and sleeping changes.
• Frequent medical complaints- stomach ache, headache, etc..
• Hopeless feelings or comments.
• Perfectionism.
• Lack of concentration.
• Lack of self -esteem.
• Depression or speaking of hurting themselves.
• Loss of interest in activities or anger over inability to partake in activities.
• Frequent bouts of crying or worrying.
• Withdrawal from the family unit.
• Speaking of or actually hurting the special needs child.

   
The last warning sign is very important. It is very easy for jealously, anger, and resentment to turn into violence, especially if the warning signs that the child isn’t coping well are ignored. Speaking with the family physician, seeking professional counseling, and joining  support groups can be very helpful. Support groups that involve the entire family can be a great outlet for siblings to talk with peers that also have a special needs child in the family. Everyday friends that don’t have a special needs child in the family often do not understand, much less relate, to the pressures and feelings of being a sibling to a special needs child.

Some great resources that may help siblings cope and express their feelings constructively, family adjustment, and parents are:

The Sibling Support Project.
The Winds of the Hurricane:  Siblings in the Storm of Illness, by Joan Fleitas.
SuperSibs!
Siblings for Significant Change
It Isn't Fair! Edited by Stanley D. Klein and Maxwell J. Schleifer
Living with a Brother or Sister with Special Needs: A Book for Siblings, by Donald Meyer and Patricia Vadasy.
When Madness Comes Home: Help and Hope for the Children, Siblings and Partners of the Mentally Ill, by Victoria Secunda.
Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs, edited by Donald J. Meyer

I don’t want this post to seem all “negative.” Siblings of special needs children may often need help adjusting. However, studies have shown that kids that grow up feeling positive about their special needs sibling, are more likely to develop qualities like- patience, kindness, tolerance for differences ,  compassion, helpfulness,  empathy, dependability, loyalty, etc.. in adulthood.