The Language of Love

Here's another submission from
Suzanne, www.specialneedsmom.com

Watching her face, I anticipate the beginning vocal sound of the word I want to hear. Sometimes her mouth remains still, untrying. Searching her eyes, I wait patiently for understanding.
No matter what my child's language limitation may be, I respect her receptive ability. She may not understand the meaning of all of my words, but she can use her senses . To hear- the soothing tone of my voice, to see-my gentle smile of encouragement as I speak and to feel- the warmth of my touch.

These things are a language she knows. In her mind, she may not only understand, but speak a language of her very own- understanding the language of love.

Suzanne, www.specialneedsmom.com

Stares, Whispers, Nudges and Judgement

I learned something new this past week.
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On Satuday, June 12th, Anthony awoke from his nap and the right side of his head, surrounding his ear, was so swollen that his ear stuck out at an odd angle. Off to the ER we go, only to learn that this is NOT a brain tumor (hey, I read too many Caringbridge pages, what can I say?!), but rather an abcess on the mastoid bone compounded with a major ear infection and a possible dead mastoid bone. No one in our home town is qualified to do this surgery (huh?) so we were transported to Children's Hospital in New Orleans.



After a midnight surgery to drain and remove the abcess, Anthony was left with about 12" of packing in the wound. This was to serve two purposes. One was to allow the hole in his head to heal from the inside out as they gradually pulled the packing throughout the week; the other was to allow the packing, which was coated with a bacterial killing agent, to help fight the rest of the infection. With an open wound behind his ear, the ENT covered Anthony's ear with a plastic cup which was held on with a strap around his head.



So, on to what I learned this past week: Rude people abound, even in a hospital setting. I know that I will never have the complete understanding of this that a parent with a child who has a visible handicap does, but the stares, whispers, nudges and judgement I saw/received this week were unbelievable. I was asked if someone (wink, wink, nudge, nudge) had beaten Anthony. I was asked if he was retarded (this, not from a child, but from the mother of a child who was also in the hospital). Some people asked "WHAT happened to HIM?". Others just stared and shook their heads as if they couldn't believe I would take my child out like that. And a few days after Anthony's surgery when his eye swelled up...well, the questions and stares were worse. Remember...we were at a hospital; we never left the grounds of Children's.



I'm so used to Anthony's liver transplant being *there*. I'm so used to answering the questions about my license plate (DON8LFE), three bumper stickers and ribbon magnet. I love to tell people about organ donation and how it has changed my life. I thought this would be a similar experience. A teaching experience.

I was so not prepared for the reactions from the people at Children's. Oh, the nurses and doctors were wonderful (as they always are). I truly was not prepared to answer questions about whether someone was beating my child! I certainly was not prepared for people who will outright ask, "Is your son retarded?" I would DIE before I said that to someone, and I was astounded that anyone would ask me about that.

So I learned this week that ignorance abounds. But I also learned that I will certainly need to make sure that Anthony does not turn out to be one of those children who stares at a handicapped person. That he should feel free to ask me questions, but that it's absolutely not okay to make that person feel ostracized.

One good thing about our hospital stay this week was Camp Med. Local children attend a camp at the hospital for a week at a time throughout the summer. These children wheel themselves around the hospital in wheelchairs. Counselors follow them reminding them that they cannot use their legs to push open a door. Some of the children had their arms strapped as if they had an IV in. Some had to wear the dressings that a burn victim does. Others used crutches or canes to maneuver themselves through crowded hallways. I know this doesn't even come close to understanding life with a handicap. I do hope, though, that it helps them learn compassion towards those who do live life with a handicap, or in the hospital.

I had to live with the stares, whispers, nudges and judgement for a week, and I failed miserably with a lesson in tolerance. I was rude and abrupt with anyone who asked what I deemed a stupid question. It's obviously a stronger parent than I who can live with those stares, whispers, nudges and judgement forever.

Memories of Sarah

I was going through some old boxes of "stuff" the other day and under a pile of papers I found some photos and a video tape. I looked at the writing on the tape and discoverd that it was the one and only video tape I had ever made of my daughter Sarah. How it got to the bottem of the box of "stuff" I will never know but there it was right in front of me. How could I resist not running to the VCR and poping in that tape. As we sat there watching it I discoverd it was taken the day before she had her cardiac arrest and was life flighted to Childrens Hospital in Pittsburgh. Her face wasn't as happy as I knew her to be but there she was for all of us to see once again. Oh how those memories came flooding back to me. Little Sarah has been gone for 2 and a half years now but it seems like yesterday I was running back and forth between home and hospital.
My mom sat there giving my new daughter Katie a bottle and at 2 and a half months old I don't think she much cares what goes on except keeping her belly full and dry diapers, but when that tape went into the vcr she stopped what she was doing and she sat and stared at the tv watching her sister. It was almost like a message from Sarah. Somehow Katie knew she should look and watch her sister and as she sat there smiling away at the tv and the baby she saw I wonder if she knew it was her guardian angel watching over her. Some people don't belive in Angels or signs but I can tell you I do. Sarah watches out for all of us everyday.

Dear Little One,

Things are not always as they seem.
We were at the park the other day, you and I, and your big sister too. She is four, only a year older than you, but she can run and jump and climb.
And you, completely in love with her, always laugh and clap- and share her joy. Maybe you imagine yourself traveling in her fluid body instead of resting on your own flat feet, managing your weak muscles that prevent you from walking independently.

On this day we can see the playground ahead, and your sister begins to run. My hands are on your waist, supporting your steps with a solid strength that enables you to shuffle your feet into an awkward yet productive gait. You are impatient; there are probably hundreds of tiny footsteps between you and your sister. You reach your arms up asking for help. You want me to carry you. I refuse the voice in my heart and I say “no”. I take your hands in mine and we begin the slow walk together.
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Finally when we arrive at the playground, you want to climb. I hold your waist, your arms and sometimes just your hand to stabilize you as you move
carefully up the steps. A little boy, almost half your size walks by you, too close -his body briefly making contact. It is enough to challenge your balance and you begin to fall. My hand quickly pulls you upright to the stance you had worked so hard to establish.

Your hands in my hands, you lead me climbing clumsily to the top of the slide. I place you in my lap. You begin to scream loudly and I see the boy’s mother studying you and me. Your sister waits below, calling encouragement, anticipating the excitement of your accomplishment. We push off the top of the slide and you are crying in fear as you always do. And five feet later as we reach the bottom I hold you in front of me and you laugh! We are closer to the boy’s mother now, and we make eye contact.

Before I can even consider conversation she asks “How old is she?” Almost three”, I reply... “And your boy?” She answers that he has just turned one, a few months back. She abandons the conversation, afraid and unable to ask the obvious questions. She turns her head and her eyes follow her son instead.

You see, little one….things are not always as they seem. When you are tired and I help you walk, when your weaker muscles need the support of my strength, or when I carry you, you may cling to me. You may even be restless or fussy. Others may see your physical size, your neediness and think I am indulging you. But things are not always as they seem, I know your needs.
Sometimes, you may cry or scream in public it is because I am challenging you. Expecting you to act like other children as we move through public life socially as a family. Others may see a tantrum; I know your special needs.

And when you move your body, quickly, repetitively, distracting or disturbing those around us, they may see immaturity, disruptive behavior.
But I know you are adapting to the challenges of your environment the best that you can. I know your special needs.

Love, Mommy

Submitted by Suzanne Perryman, www.specialneedsmom.com

Differences in Common

Raising a special needs child is a blessing of mixed emotions. She has taught me that the capacity of patience is almost inexhaustable. After 10 years as Lil Sepia's mom, I now know that my road will be filled with joy, pain, laughter, repressed anger at and endless prayers to the GOD that gifted me with her.

A couple of months ago, I watched "Riding the Bus with My Sister", a Hallmark tv movie and feel good tear jerker that will send the "normal" world their seasonal dose of "Thank God, that isn't me" or "Poor poor woman, I feel her pain". Spare me. My reality doesn't end with credits and a good cry.
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Andie Mc Dowell played a harried career photographer that is forced to reconcile with her developmentally delayed sister, played by Rosie O'Donell, after the death of their father. After watching this, I have a renewed respect for Rosie, she played this role without creating a characture or dramatic theatrical overkill. Andie's performance reminds me of my own struggle to deal with the cruel side of society. The side that still throws the word "RETARDED" around as a joke.

When I chose to have my daughter at 31, I would have never believed at the time I would wind up with a child whose existence would so challenged. People can be so cruel, even family will distance themselves out of ignorance or from being uncomfortable around someone "different". Coming to grips with the isolation and stunted sociability has caused me to seek other forms of reaching out to those that I can commiserate with, as well as "typical" parents dealing with the same daily childhood issues.

The reality checks for me come on a daily, if not on an hourly basis. I have chosen not to write much about her. not out of embarassment, but out of frustration. I spend alot of time defending her diagnoses. Mental retardation and Cerebral Palsy are quite a 1-2 punch and my patience with the uneducated and ignorant comments, stares and atittudes wears thinner on some days more than others. When I see children stare, sometimes I take the opportunity to introduce Lil Sepia and give them age appropriate info on her "differences" as well as what they may have in common. The parents I hope will teach their child about disability and sensitivity.

Speaking of that, one of the best books I have read on this topic is "Differences in Common", by Marilyn Trainer. She captures the struggle, with an unflinching look, at the truths of parenting her son with Down's syndrome.






I have read countless books on cerebral palsy, mental retardation, parenting and therapies. Occupational, physical, music, and speech therapies are just a few that have helped my daughter be more independant. It is a difficult balance between sheltering her and pushing her to excel. I fight with family, friends, doctors, teachers and well meaning strangers who want to add their 3 cents to my supposed "plight".

As her mom, I can only hope that I will be able to give her the best of what she NEEDS, most of what she WANTS and pray that society will acknowledge we all have "differences in common".

Who knows, maybe GOD's sense of humor is that WE are the ones who are really "special" and THEY are angels living on earth laughing at US.

I just wonder. ;-)