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What if I gave birth to a disabled child in the 1950's and 60's

I have been embarking on my journey toward receiving my Masters of Science in Education. This summer one of my courses is Special Education Law. Here is a journal entry from this week:

Journal

As I was reading this week, I came up with many questions to which I want to research further. I have many filters in which I am able to access and judge information presented:

Parent of a disabled child. Teacher of the gifted. Former art teacher. I have organized this journal entry from the standpoint of a parent of a disabled child. Accessing this information and reflecting on my own experiences is cathartic and creates meaning for me.

As a parent, questions flooded my mind as I made myself through the readings and videos in this module: Social and Historical Contexts of Special Education. Particularly, the documentary Unforgotten: 25 years after Willowbrook was very hard to watch. I made myself watch the two hour documentary in it’s entirety. I felt obligated, as a parent of a disabled child, to thoroughly soak in information and relive this tragedy because I and many others still fight on the daily to ensure it (abuse, neglect…) never happens again. These are some of my questions:

What if I gave birth to a disabled child in the 1950s or 1960s? Would I have been forced to institutionalize her? Would my child have suffered more? Would she have been accepted as well into society? Would she be able to grow emotionally or academically?

If I gave birth to my daughter in the 1950’s or 1960’s it is very likely that she would have been institutionalized. Despite all the wonderful change that has occurred over the past 50-60 years regarding disability rights, education of the disabled and their care, I remain a burnt out parent at the end of each day. Without the state provided services we have access to now (only because we moved to a city to get access to them), I would have given my disabled daughter Izabelle up and into the hands of a state institution. My family would have convinced me. I hear on the daily from my mother and grandmother:

“I don’t know h0w you manage her.” “I didn’t want this for you, Rachel.” “It’s just so unfair!”

When my daughter was diagnosed with epilepsy at age four and then at age six and onward more labels added:  ADHD, anxiety, learning disabilities spanning from dyslexia to dyscalculia, developmental delay… I was in disbelief. I was in denial. We pointed fingers and blamed the schools. I was confused, scared, devastated and worst of all I felt alone. As a single working mother, I navigated the health care and educational system. I found many allies along the way. Kristine Binette from the Epilepsy foundation of New England, our phenomenal caseworker’s Ricia and Amanda and other mothers of similarly disabled children remain my harbingers of faith and hope that someday, Izabelle would get the care she needed and that I myself could make it through each day without checking into a hospital...myself (I tried one time and they sent me home with valium).

If I gave birth to my daughter in the 1950’s or 60’s Izabelle would have suffered from unfathomable abuse and neglect in institutions like Willowbrook. She would have been that naked child in a straight jacket covered in her own feces, as pictured in the documentary Unforgotten: 25 years after Willowbrook. (I am brought to tears at the thought.) I, myself on the other hand would probably have had an easier life for the time being. I would have continued my life without all the daily worry I suffer from now. When visiting my child, I would have felt my actions to be completely and utterly selfish. I would have felt enormous guilt and shame. Knowing myself, finding one bruise would have had me in an outrage… but I would have remained powerless without laws such as the Individuals with Disabilities act (IDEA) to protect her.

If I gave birth to my daughter in the 1950’s or 60’s she would not have been accepted into society the same way she is now. She would be the subject of bullying. Her peers would have shunned her. She wouldn’t have had the social skills she has now because she would have been placed in homogenous grouping with others like her and wouldn’t have had the opportunity to interact with non-disabled/neurotypical peers (Backward Children and Forward Teachers, 1913). I would have felt more shame and embarrassment than I do today in the community in which I live.  In the 1950’s or 60’s public buildings wouldn’t have been accessible to us during the times that Izabelle has had to ride in a wheelchair.

If I gave birth to my daughter in the 1950’s or 60’s she would have backtracked significantly educationally. She would have been the culprit of ableist thought (Eliminating Ableism in Education, 2002) and likely no one would have taken the time to find out how she learned best. Her gifts would have remained latent.

My daughter wasn’t born in the 1950’s or 60’s. She was born in the year 2007. Disabled veterans like Judy Heuman and many others paved the way for her so that she could benefit from a public education that is catered to her needs. Izabelle’s educational team at Farrington Elementary School in Augusta, Maine is phenomenal. In her third grade year, she spent at least 60% of her time weekly with same age non-disabled peers and established relationships that will last her a lifetime. She has grown academically despite the damage to her frontal lobe (due to her chronic seizures) and received her first educational and school citizenship awards. The inclusion model has been a game changer for my child. There is a time and place for independent work with Izabelle’s special education teacher and ed. techs but I believe that the most significant growth has occurred due to the feeling of being a part of an inclusive school community that believes in her.

Harbinger of Hope

Hope. 
I lost it and found it again. 

I haven't written in a while... well, because things are actually going better! It's hard to admit... as mothers of medically fragile children, when our children are doing better: 

• We are conditioned for disappointment. As soon as I embrace or celebrate a good streak... it usually ends abruptly in a larger scarier seizure or longer span of unwelcome symptoms or activity. 
• We don't want to rub things in. There are other Moms still struggling with their children and we feel bad. 
• We convince ourselves it isn't real. We have been used to things being hard for so long that we are in disbelief. 
• Observations remain unproven. Why is she better? Too hard to tell... 

Isabelle went 6 DAYS without a seizure. 

I'm celebrating... (reluctantly) 

The thing is, we didn't do anything drastically different the past week... the reason for this hiatus is unclear. Izabelle was sick with a respiratory infection and had high fevers for three days this week. Fevers usually spur increased seizures for Izabelle and makes this even HARDER to tease out. 

• Could it be the high fever detoxing her body?
• Is it all the Ibuprofen and Tylenol we gave her?
• Is it the last two supplements finally working? Its been six weeks. 
• It can't be that we lowered clonazapam 6 weeks ago and it's finally showing... could it?
• We added a new ADHD/Anxiety med on Tuesday... how could that be it? She still didn't seize for days before the addition! 
• Is she reaching puberty and starting to show signs of growing out of her seizures? (To believe this... is truly a risk to my sanity as a mother. I'd rather expect the worst and have it not come then expect good and be devastated.)

"Why tease things out?" To fucking find out what's working and duplicate it!  It's a constant battle!!! Time to watch and wait. We are back to square one. Seizure this morning. The real indicator will be observing her over the next few days to see if the decrease in seizures is a reality. 

My Child

Just how, how did it come to be?
My child...tainted by the horror that is epilepsy.
My child...damaged, delayed and wading through drug imposed delirium from day to day. Recently I've asked myself:
Who IS this child? There are moments, maybe hours where I see my darling Izabelle shine through, other times she's lost somewhere in one symptom or another. I look at other children happily playing while
My child...is too scared that she will have a seizure to stray too far away from me. I see toddlers string together sentences more easily then
My child can find words to express herself. The joy they say, you know parenting, has become a thankless chore,
a burden,
a disappointment...
Is it wrong that after days of time secluded within the intensive care of
My child... I yearn for the ease of connecting with a neuro typical child? This year has been so draining,
part of me has turned cold,
part of me has lost hope,
Part of me has emotionally disconnected and won't allow myself to be fully disappointed again.
I expect the worst...
Not to be grim, but that's the only true pattern with
My child's condition; that it's fucking worsening; that nothing fucking seems to work. Five years ago, it seemed like she was a typical child. I miss those sweet easy days when she was cheerful, happy, seemingly healthy and as plump as can one can be. Where did it all go wrong? Was it the vaccines? Were the seizures there the whole time? If so, how did I miss them?
I just want to go back there.
I don't want to be where we are today.
The most desperate thoughts flood my mind lately. I mentally and physically labor trying to find help for her, for me, so I can have a somewhat normal life too... Some days giving up seems to be the wisest answer. I'm lost now too, trying to help her.  I just want to be a happy, loving mom... not the nurse, the social worker, the pharmacist, the behaviorist... Just the loving mom. Is that too much to ask?

They are to blame.

The pharmaceutical companies have ruined my child. They have her system hooked. The answer to side effects and withdrawal is more pill pushing. We are forced to continue med-ing her more and more. I think back to the early days of her seizure disorder and how easy her seizures were to manage. These pharmas have harmed her more then she ever would have been without them. 

Dogmatic proclamations of a cure can kiss my round ass. 

My brain always goes back to: "You can quit your job, then you can take her off of all the pharmas and nurse her back to health." 

I dream of a safe detox center where we can go to be done buying into this facade. 

I never feel like I can do enough. 

I want her back.

Part of me is broken. 

I numb myself to get through each day. 

I detach to stay sane. 

I hate the fucking neurologists we have been forced to see by default. Only trying to do their jobs but their methods make matters worse. 

Drones put to work by hierarchies to synthetically remedy seemingly abnormal biological manifestations. 

I question that the blame belongs to the same group of medical professionals for causing this retched disorder in the first place! Using the guise of healing to beef up the pharmaceutical industry. You prescribe on a whim but you aren't there for the aftermath.

Your pitocin that so unnaturally set her birth into action...

Your delay to come to her aide when she was in distress in my fluidless and  constricting womb. 

Your medicating the pain I faced after you cut me wide open to get her 'out'. 

Your convincing tone when you told me it was time to vaccinate. 

Your recommended schedule....

I want her back. 

As a society, we have been taught to blindly trust these doctors. What they say goes. 

All those years in medical school and yet they have no clue know what's right for my child. 

She's delayed. 

She's changed. 

Slowly becoming more damaged. 

She's always getting worse. 

That's the only constant I've found. 

And a note to the believers: 

Yes!!! I've prayed for her health and healing!!! 

She's on every prayer list. She's loved. 

Yet, this experience slowly makes one loose faith. 

I pray for her comfort now... 

The healing part... more sure that it can't be done based on multitudes of real life accounts of the exact opposite. 

When will she actually be able to be a kid? She's walks around in fear of the next seizure event. She lacks language skills to seek help, instead she's acting out big time and can't comprehend how to stop acting that way. 

I want her back. 

Oh yes. 

Positive thinking. 

I've been trying so hard to be positive. 

You see my smile right? Well it's real. I AM happy about so many elements of my life. 

This part... this is tragic really. 

One year ago she seemed better. 

I look at old pictures and see a healthier, more bright child. 

Her skinny body :(. 

I see ribs. 

The huge bulge on her frail chest! 

There are no excuses for this.

I want her back. 

Fighting the Guilt

Feeing torn. Yet I need to place my needs first. It's my turn again. I detach (with love). I've succumbed to allowing others to care for my daughter. The primal need to be present for every single seizure is subsiding. I can walk away but more than likely, it's always going to be just plain fucking hard! Each and every time, it's an inward battle. Society tells me I'm selfish, yet the stamina needed to keep placing one foot in front of the other makes it a god damn requirement!!! I'm numb. Desensitized to a certain degree... Medicated to keep my emotions level so I can function. I need to be that last tree standing. Rooted, strong...firmly planted, in the eye of the storm; on the very edge or fully submerged. Do I wait until it's too late to indulge in my dreams, or do I do it... Now, think now. 

What the '=#%&'?

Is some kind of spiritual obstacle course or some type of mean trick!?! Do I really need to run marathons as a mom on a day to day basis! Can someone clone me so I can be a nurse, a caseworker, a pharmacist, a doctor, a playmate, a psychiatrist, a entertainer, a friend...? I wear too many hats. Over and over I'm left with questions like: 'Why would God do this to us?' It's plain cruel and unfair!!!  This hard work can't be all for nothing either! We can't just live and die. There must be a reason, some direction, some bigger plan, some chance of enlightenment!' I'm loosing the people I love to darkness, to the unknown for hours, days, weeks, months, years... I just can't accept so much of the world's suffering. Why are some of the sweetest souls tortured while others appear to be left unscathed? Or does everyone have their own version of misery?

Over the past week I've been kicked, bit, head butted, had objects hurled at my head, I've been growled at... I've had to clean urine out of my child's clothes and bedding because of these damn seizures (Diapers/depends are waiting for us at the pharmacy)! I've had to hold my child in safety holds to keep us safe. Belongings have been destroyed. I've made hundreds of phone calls for both neurological and mental health like a phean. Hell, I've even considered hospitalization. Like the kind where she's in a ward with paid professionals who know how to ease medication transitions. Tonight she refused her meds from me after a seizure. It's so hard working my ass off trying to help this little being then have her snub me! What a thankless job this can be but yet... Somehow so rewarding. Life can be full of so much joy but also so, so, SO much pain.