From Our Affiliates

Poem Called “I Am The Child” Shows Love Gained By Having Special Needs Child With Phelan McDermid Syndrome


Phelan_McDermid_Syndrome_Microdeletion_Chromosome_22

My name is Andrea and my son Andrew has Phelan McDermid Syndrome (aka 22Q13 deletion). This genetic disorder is caused by a microdeletion on chromosome 22.

Our son means the world to us and we are incredibly thankful to have him in our family! There are so many poems describing what is gained from knowing and loving an individual with an intellectual disability.  One of my favorites, called I AM THE CHILD I have pasted below.

There is a wide range of severity of symptoms observed in people with the Phelan McDermid Syndrome, but most exhibit moderate to severe developmental delays, physically and intellectually, but especially in speaking and communicating. Very low muscle tone is a common trait of the syndrome, and many kids with PMS have problems with eating, sleeping and emotional stability.

For more information on PMS, visit the Phelan-McDermid Syndrome Foundation.

I AM THE CHILD

(Author Unknown)

I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of — I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.

I do not give you rewards as defined by the world’s standards — great strides in
development that you can credit yourself;
I do not give you understanding as you know it.
What I give you is so much more valuable — I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don’t learn easily, if you judge me by the world’s measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strife’s and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.

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