Wednesday, June 29, 2005

Not Otherwise Specified

Hi, all! This is my first post. I have been meaning to post for such a long, long time, but things have been going very well with my son, and I really haven't felt like even thinking back on how unbelievably hard our lives have been. Up until now. And lately. Like, the past year. The past year has been amazing and so very easy.

See, my son, R, is four-and-a-half and he is autistic. He has PDD-NOS to be exact. That stands for Pervasive Developmental Disorder, Not Otherwise Specified, and is included in DSM-IV for cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met. He is just now starting to speak, and he is pretty behind socially, as well. R is very, very affectionate, sweet, and even-tempered. I cannot believe how sweet and even-tempered he is considering that he hasn't been able to communicate with us verbally, and there really is only so much a person can pantomime. If it were me, I would be surly.

Okay, so, I was reading something online, in a debate forum on a mommy board, and out of nowhere someone stepped up and mentioned meeting a woman with an autistic child. This someone, I'll call her B, seemed to feel superior to this woman because the woman hadn't heard about the gluten-free diet yet. Her autistic son just turned three and was recently diagnosed. B stated that she couldn't believe how like a deer in headlights the woman was, and that the woman didn't even know to change her son's diet--B's words: "...that she would rather keep her son imprisoned in his own mind and unable to communicate than to feed him differently."

I became irrationally angry at this point and went a little berserk. And after I typed through my irrationality, I thought it might make a decent post:

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I would like to say that not every person with autism is the same. Not all are imprisoned in their own minds, by any stretch, and it is insulting to the n-th degree to say as much.

That poor deer in the headlights woman *is* a deer in the headlights. Knowing when your child is three is an amazing bit of parenting in and of itself. If she hasn't yet heard of the gluten-free diet, she will.. And secondly, it is unbelievably offensive to think you know more about autism than that woman, or anyone for that matter. Just because you know about the highly publicized, largely ineffective diet certainly doesn't mean you know autism.

Could you help her child when he is melting down? Do you know his stims? Can you figure out what he wants to eat, as he is incapable of telling you? Do you know which door to use to enter the store so that he doesn't see a fountain or an escalator or those spinny garden decorations, any of which will throw him headlong into a stim that will inevitably end in a meltdown?

Do you know if he hates itchy tags or loud noises or crowded or cramped spaces? Your laundry detergent, your vacuum cleaner, your blender....does he need to watch water coming out of a faucet for hours? Will he want you to rewind the same 4 seconds of television for fifty minutes? Does he hate hats, sandals, jello, mud, dogs, cats, birds, garages, forks, spoons, and only drink out of the blue and green cup with the handles?

Stuff like this has made up 1/1,000,000 of my day, every day, for years.

So forgive her if she hasn't heard about the "special" diet that will free her son from the prison of his own mind.


Tuesday, June 28, 2005

The Language of Love

Here's another submission from

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.


Monday, June 20, 2005

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.

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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.

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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.

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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.

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Saturday, June 18, 2005

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.

Friday, June 17, 2005

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,

Friday, June 10, 2005

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. ;-)

Tuesday, June 07, 2005

What I Wish...

Moreena asked me ages ago what I wish that my parents had known about having a child with a disbility when I was growing up. It's taken some time to come up with as it needed some thought and I would be interested to hear comments. [as an aside, I mentioned the question to my mum and she requested we "not go there" so I don't have her take on it]

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I’ve had cerebral palsy (CP) for all of my life and have always been a wheelchair user to a certain extent. My journey with cp has been a difficult one and I don’t think I’ve fully reached my destination of “acceptance, Holland” yet… I’m a lot closer than I was even one year ago and I do spend a lot of time there but I do still occasionally spend sometime in “Longing, outside looking in, outskirts of Italy, border of Holland”… Longing is a place where you expect to find those who have just been diagnosed or had their child diagnosed with a disability or serious health problem.

Sometimes though, those of us years past diagnosis and even people like me who have never known anything other than life in Holland can be found there, sitting in our wheelchairs looking over at the so called “normal” people, the Italians and feeling wistful, wishing we could be like them. Longing isn’t a very nice place though… it doesn’t have the Rembrandts, the windmills and the tulips of Holland and it doesn’t have the children running and jumping and living their lives free of medical hardship which Italy does. It’s just a dark place, an empty cold place which you must move on from in order to flourish and survive. You can always return for a brief visit when things get tough if you must but it’s not the place to set up camp and live forever.

However I don’t expect to ever fully arrive there over in Acceptance, Holland to stay… just like happiness, it’s more of a journey than a destination I think.

I don’t have a problem with my disability, many years have passed since I was the shy girl who hated her “problem” and the wheelchair which represented her “cage”. I do still have moments of I hate this… but now they are usually very short and quickly become replaced by “it’s not the cp that I hate it’s the problems that living in this world causes.”

There’s a lot I could wish I had known a lot younger in life… there are things I *do* wish I had known when I was younger which would have made things a lot easier for me and taken a way a lot of my tears and traumas. I was asked what I wished my parents had known when I was younger… That was a question which took quite a bit of thought.

After some thought this is what I have decided. For me, I think I wish they could have known that what they were doing was right... that forcing me to be independent and do things for myself even when it was a struggle and I screamed and cried and said I hated them was a very good thing because it made me who I am today. If I could go back as I am now and say one thing to my parents when I was younger it would be "thank you"

I think they probably knew that it was the right thing to do otherwise they wouldn't have done it but not only did they have to deal with my reactions they had to deal with others too.

And as I’ve learnt throughout my life dealing with well meaning, pitying or even disapproving strangers can make the journey with cp so much harder.

When I was younger I used to be able to walk a lot more (it’s not uncommon for people with cp to lose function when they have the growth spurt in their teenage years) and used to walk more than not. I was walking around tescos with my mum and fell. Because of the way I walk it is extremely obvious that I am disabled – my upper body “swings” from side to side with each step.

So anyway I’d been walking in the supermarket and fallen. I had recently learnt how to get myself up when I fell and it was a skill I was very proud of. So proud that when my then physiotherapist came to see my at nursery right after I learnt it I went “look what I can do” and threw myself on the floor so she could see me get myself up off of the floor. I digress…

But then, as now, when I fell in a “new” place I was a bit unsure of what to do. We had also learnt as I think most parents do that its better not to make a fuss if I fell because it would make things worse. So she just went “go on then, get yourself up” and up I got.

Standing near to us was a woman from the salvation army. She obviously felt very sorry for me and began to pray for the “poor handicapped girl”. Whilst I have no problems with the concept of prayer and religion I have a huge issue with this. Praying for someone you do not know in the middle of the supermarket just because you feel sorry for them and feel that they need better/different treatment or surroundings is plain and simple wrong. There is such a thing as silent prayer but what she did is pray out loud for me which meant that everyone heard.

My mum has since said that it made her feel as though this woman thought that she was a terrible mother just for doing something that she [my mum] knew was best for me. To give an idea of how much this must have affected my parents – I probably was only five or so when this happened and have no clear recollection of this happening. But this is an incident which has been repeatedly mentioned at various times ever since that I now remember it

I think now so many years have passed since this incident that it no longer bothers any of us but at the time it obviously did and if the girl I am now possessed a time-turner like they have in Harry Potter and could go back in time to see my mum and me as I was then I would have to say “keep going, it must be tough but look at who that little girl clinging to you hand becomes – I am who she becomes and if it wasn’t for all the struggles, all the tough times, all the times you did something and then wished you didn’t have to – I wouldn’t be who I am now.

That’s not to say that I think my parents did everything right. I can think of at least one incident where I think they maybe did wrong. This was when my brother who is just under four years younger than me was allowed to do something for the first time – something I had not been allowed to do. I was about 13, maybe 14

But I don’t see how they could have done it any differently and to be honest I think now looking back on it with the perspective that the luxury of being a decade past the event brings, I needed that to happen.

I kicked to the best of my ability, I screamed and I well and truly made it known that I thought this was the most unfair thing ever. But still my brother was to go and I wasn’t.

Some comment I made showed my parents that I was under the mistaken impression that if I did enough physio I would be cured and would no longer be disabled. We talked and my mum and I cried together whilst she explained that she would do anything to take my cp away from me but it was never going to happen.

And yes, I do think that perhaps allowing my brother to go and making me to stay when I knew I was the oldest and was very proud of that fact was a little harsh. But that was a situation which was always going to be tricky. Either me or my brother were always going to be upset by the decision.

As I didn’t get to go I hurt badly on that day. But I also learned a very important life lesson and started moving away from my spot in Longing, and making those difficult first few steps along the rocky and somewhat winding road towards Acceptance, Holland – the one I still travel now.

So if I could tell the parents of the newly diagnosed and growing up Emma one thing. It would be do what you think is right, follow your hearts and do your best.

Even if your child treats you like it’s the worst thing you could do for them, if family disagree and strangers disapprove… they are your child and you have to do what is right for you and for them. And when they’re grown up and can look back on events with 10, 15 or even 18 years since they happened. They will probably thank you. Because good times, bad times, painful times, happy times, without them and more importantly without their parents love and support they wouldn’t be who they are. The disability or illness which they have isn’t what defines them and makes the person “Emma” it’s the experiences, and most importantly the nurturing they have received.