"Special" Needs - What is Normal Anyway?

Every ‘special needs’ child is a symbol …
of the triumph of Life.

After visits of our own to Children's Hospital, and hearing from both families and professional caregivers I wrote the following article ...

A long hardwood table centers the sullen room; around it sit a number of medical professionals in conference with a couple of young parents.

Their oldest is about to enter Kindergarten. Normally an exciting time of wonder and anticipation, this meeting was to confirm five years of mounting fears: “Our conclusion is that your child seems to be functioning cognitively at the moderate-to-severe handicap level.”

What does a parent feel, hearing such a verdict?

As we ask that question, in all of our lives we can recognize there will be times where, as one suffering parent described it, we find ourselves ‘grieving the loss of expectations’, of dreams not realized.

This is common ground for us to find a starting place of understanding: Some suffer loss during pregnancy; some in the battle against illness; for others it is recognizing at the moment of birth what the ultrasound test did not show up.

What is it like to have a special needs child, to be the parent, for example, of a baby who they say has perhaps two years to live?

Imagine the anguish of the parent who is supposed to decide when to give the ‘Do Not Resuscitate’ order. You try not to think about it. Frankly, basic concerns just to keep the child healthy and here overwhelm the issue. The mission of life is to comfort and to care.

You may in your office ascribe medical terms to the test conditions and try to draw objective conclusions; but you are not there to see the little one laugh who is said to have no higher-level brain functions; to appreciate how this little one, who is said to be unable to hear or see, stops crying and arches toward his mother’s voice, who kicks away to his father’s tickles, who is so amused by his big sister.

One brain specialist matter-of-factly told a new parent inquiring as to the extent of their baby’s problems, "The child will not see; the child cannot feel.”

Pointing to a wall chart he said, “You see this area, here, that is where human function happens in the brain -- there is nothing there. The brain is less than the size of that of a cat." This is a specialist who ought to have his own head examined.

You have to find some way to laugh when life is like this. These parents sometimes make jokes and put them on the Internet (see the web site our-kids@maelstrom.stjohns.edu):

Did you hear the one about two doctors, a hot air balloon, and a neurosurgeon?

Two doctors are floating in a hot air balloon about twenty feet above the ground and they’re lost. They see a man on the ground.

Dr. #1 calls down, “Excuse me. We’re lost. Can you tell us where we are?”

The man on the ground says, “Why, yes. You are floating in a hot air balloon about twenty feet above the ground.”

Dr. #2 says to Dr. #1, “That is a neurologist.”

Dr.#1 says, “How can you tell?”

Dr. #2 says, “Because what he just told us is completely accurate … and totally useless.”

Who are we to decide presumptuously that a baby born without certain brain functions is not a person? “Humanness,” remarked one parent profoundly, “is such a soul-thing.”

Should we not be ready to do for this one in a ‘permanent vegetative state’, as they call it, everything we would do for a sibling rushed to Children’s Hospital Emergency in full cardiac arrest? Must we not agree as a first principle that all human life is inherently valuable?

Medical professionals can talk so clinically about your precious treasure, the one you cradled as the most beautiful baby on earth. The astounding truth is that each parent who surges with this loving sentiment is absolutely right!

Although the little one emerges wrinkly, discoloured and covered in cheesy vernix, at that moment we receive trembling the mysterious, precious gift of life; and beauty is beheld.

I have come to an inescapable conclusion in speaking with parents of special needs children, with their caregivers, teachers and doctors: Life is sacred; from God and not from us.

Life is a mystery of Design at which even the pediatric specialists, in their gestational observations, can only marvel.

With tremendous consolation, another pediatrician explains how special our special needs children really are.

“Many developmental complications will naturally induce a termination of pregnancy so that only one in five pregnancies lead to birth. As a result the medical community is left with only a hundred or so study-able syndromes. And we are left with very special children who are survivors. They are victors.”

Every special needs child is a symbol, not of inconvenience, nor of hardship, nor pitiful hopelessness, but of the triumph of Life. Remember that. We call them ‘special’, and rightly so, because they are extra special gifts entrusted to remarkably special parents.

Many readers will be outsiders looking in on the world of parents with their special needs children. The parents alone know how valuable -- how tremendously much these kids are worth -- because they are closer and have been entrusted with a special care.

Here’s how one parent, feeling misunderstood, shared the plight:

Where are the parents? They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for test results to come back and wondering: Is this the time when my child doesn’t pull through?

Where are the parents? They are sleeping in shifts because their child won’t sleep more than 2 or 3 hours a night; they are constantly watching lest he do himself or another family member harm; they are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care …

Where are the parents? They are trying to spend more time with their non-disabled children, trying to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working at two and sometimes three jobs in order to keep up with extra expenses.

Where are the parents? They are struggling to survive in a society that pays lip service to helping those in need, as long as it doesn’t cost them anything. They are trying to patch their broken dreams together for their children and families. They are busy, trying to survive.

Caught up in our own hectic rush of the day-to-day, we need to appreciate that parenting, for some, includes having to ache and worry for their child's surgeries at Children's Hospital … worry your child will leave the bedroom, the house, at night; worry your child may run into the street at any moment and for any reason; worry about fire, deep water, and high places.

That trying four year old, whose autistic curiosity takes him into the strangest places, is special because of the ability to see the world in a unique way. What some see only as liability is actually tremendous potential for creativity and inventiveness, maybe to change the world. An earlier generation called them ‘retarded’, seeing only the obstacles.

Let us pray for the vision impaired … who can only see differences in people, not the person who is inside

Let us pray for the speech impaired … who can only speak with harsh and hurtful words, instead of kindness and understanding

Let us pray for the emotionally disturbed … who cannot seem to care for anyone that is any different from themselves, instead of trying to love everyone, different or not

Let us pray for the hearing impaired … who can only hear the misspoken words, instead of listening for what someone is trying to tell them

Please God … help these truly disabled people so that this world can become a better place for all your children. Amen.

_{--Tina Yows}

It's all about perspective – how we see. We've changed the wording to ‘special needs’, but have we necessarily transformed the stereo-typical reactions?

One educator observed how peers at school can be so cruel about any differences from the norm they perceive, be it ability, shape, or colour. “Prejudice starts in the home,” she said pointedly.

Perhaps it is the siblings of special needs children who will grow up learning, and in turn teaching, a lesson we all need to learn -- to be more sensitive to the needs of others.

It is important to talk about this at home. Don't be embarrassed for us. Treat us and our kids like everyone else: as someone special.

My prayer is that the sharing of these vulnerable words might be a beginning of greater openness and acceptance, in a community where needs are all around us -- needs we can't just push towards institutions and conveniently ignore.

Ponder the unconventional and deeply personal value Jesus attributes to the needy in welcome of the blessed to their reward (The Gospel of Matthew 26:31-46):

‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you took me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty…? When did we see you a stranger and invite you in, or needing clothes …? When did we see you sick or in prison and go to visit you?

The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’

Jesus sides not only with the wealthy or the healthy who are able to pay back, but mercifully with ‘the least of these’. May that same spirit of grace and compassion flow through community from all our hearts, and may love mixed with faith be yours.