What They Didn’t Tell Me

I’ve been following some great parent support groups on Facebook. A few of them are for Autistic families. Sweet Baby has not been diagnosed with Autism but their words of encouragement touch my heart. Below are some poems I’ve found on these pages and well as a sensory processing disorder support page. Each one brings tears to my eyes and I relate to each in a different way. I’ve changed them just a little bit to fit our situation. I hope if your a mama of a special needs child I hope these poems bring comfort to you the way they did me. I recently wrote a poem myself and will be posting it soon. 

“Here are some things you will not find in your research on autism special needs.

You will not learn how this diagnosis will affect your marriage or other members of your family. You will not be told how it may fundamentally 1234387_10201189676478637_1953455665_nalter your perceptions of what is “normal,” how it may change your view of human beings, how it can force you to question small talk and why we behave the way we do, how it will transform your outlook on life, how it will change you, how your life and everything you assumed to be true, is no longer what you thought.

Having a child with autism may cause you to feel things you never dreamed possible. You may know moments of joy and moments of despair you could not have imagined. You may find yourself going to untold lengths in the hope of helping your child. You may feel distracted, unable to concentrate. Your work and career may suffer. You may learn what it is to be sleep deprived. You will come to know what it means to feel desperation. You will know sorrow in a way no one can prepare you for. You will know happiness in a way no one can prepare you for. Sometimes you may feel both sorrow and happiness within the same day, within the same hour, within the same minute.

You may spend money you do not have on yet another treatment, yet another doctor, yet another specialist, yet another therapy, yet another intervention, all the while rationalizing that if it helps, it will all be worth it. You may contemplate doing things you would have scoffed at before your child was diagnosed. You may find yourself trying things that defy logic and have no medical basis. You may listen to implausible, anecdotal stories and think — we will try that next. You may dream your child is speaking to you in full, complex, beautifully self aware and revealing sentences. You may wake from those dreams believing for a few seconds they were real and not a dream. You will pray that you might dream again. You will welcome sleep, as you never believed possible. You may ache with sadness because your child is crying and in pain and your presence brings them no solace. That ache may become unbearable when your child hits themselves in the face, bites their own arm or hand, punches their own legs or stomach. You may question every maternal instinct you have.

You may feel ecstasy from being hugged, unprompted. You may feel the exquisite joy from having your child reach for you, ask for you or look at you. You may know the joy that comes from seeing your child work so hard at something that does not come easily to them. You may celebrate when they use the bathroom unaided, drink from a cup, sleep for more than a few hours without waking you, try a new food or simply acknowledge your presence. You may feel a gratitude you would not have believed possible. You may cry from happiness when they say a word, any word, even if you are the only person who can understand what the word is. You will know what it is to appreciate commonplace things — eye contact, the correct use of the word “me,” “you” and “I,” physical contact initiated by your child, a word, any word spoken or a smile.

You will feel a fierce love for your child that seems to come from a place that is not of this world. You will know what it is to love unconditionally and you will understand what that really means.”

~ Ariane Zurcher

 

“Dear Mommy, don’t you cry now and Daddy, don’t you weep.1175388_500893776672638_861680460_n
I want to whisper in your ear before I go to sleep.

I know that when I came here, I seemed perfect in every way
And you were so proud Daddy, when you held me on that day.

And Mommy when you kissed me and wrapped me up so tight,
I felt as if I belonged here, and everything was right

When things got really scary, and I began to slip away
I saw your face, dear Mommy as you knelt by me to pray.

And Daddy, I always notice when you wipe away a tear,
or watch the other little boys as they run and laugh and cheer.

I may not be able to tell you how much I love you so,
or even show you how I feel and what I really know.

But when you hold me Mommy, at night when all is still
I feel your dear heart beating, and I know that all is well.

And Daddy when you take me to the park, to run and play
I know that you still love me, though the word’s I cannot say.

So Daddy don’t you cry now, and Mommy don’t you weep,
I want to tell you something before I go to sleep.

I may be sort of different, and you may not understand
I know that I am not that child that you and Daddy planned

But I love you both so very much, and I know you love me too
And one day when this life is done, you will feel my love for you.

I know the future is unknown, and you will always have to be
The ones who love and listen and take good care of me.

The road we walk is rough sometimes, and you cry a lot of tears,
but one day we will turn and laugh as we look back over the years.

So Mommy don’t you cry, now and Daddy please don’t weep
I want to say, I love you before I go to sleep.”

~ Susan Meyer

“The world i once knew had changed forever,
For you my  girl son your extra clever,
Words so unclear you dont always speak,
Sometimes its to much mummy feels to weak.

All the hard work and effort your worth,
For you i’d move heaven and the earth,
I dont mean to get angry or even get mad,
But sometimes its hard and mummy gets sad.

Its hard to know they judge you and me,
Before they understand or even try to see, 
They dont see the struggle we go through each day,
Or the feelings you must have i want to take away.

Mummy gets scared when i dont know what to do,
But please Haylee Sweet Baby know that mummy loves you,
When your sad and angry even when you cry,
I only get sad and angry because i dont know why.

Haylee Sweet Baby I wish I could make it easier for you,
But its so dam hard mummy has no clue,
I try my best to help and understand,
Remember i love you and will always give you a hand.”

~Unknown

 

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