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Saturday, January 28, 2012

Shameless Optimism...

When you are a parent of disability you waffle between shameless optimism of what your child can or could do, and utter despair for what they are unable to do. And at some point in your journey, you hit the brick wall of reality.

I have definitely hit that brick wall of reality and am finding it painful. Sophia is eleven and in grade six. There are moments when she seems like a ‘typical’ eleven year old girl. Sophia knows all the words to any Selena Gomez song, she wants to wear ‘big’ girl clothes, paint her toe nails. She wears deodorant, has her first bra and definitely has eleven year old girl emotional break downs!

Sophia loves to help out in the kitchen and goes shopping with me, following the grocery list with determination. We have real conversations about what kind of vegetables we need for dinner and what apples are our favourite. She can choose between cheddar or mozzarella, cold ham or turkey. Sophia loves to read the ingredients in the food we pick out and fervently announces to anyone walking by the percentage of sugar indicated on the side package.

In these moments walking up and down the aisles, I have shameless optimism that my daughter will grow up and develop into an independent, self reliant woman. That she will have completed her education, have a good job, a social life, and share her home with close friends/roommates. That she will manage her own bank account and perhaps, fall in love, have children of her own.

Slam! There is that damn brick wall. OUCH! It hurts…

Sophia is estimated to be about the developmental age of a four year old. I would say it rings true in that her favorite show is still Barney, and she laughs uncontrollably watching Sesame Street on her iPad. We still have to cut up her food, bath her, and there are moments like tonight at dinner, when she really does not understand the context of the conversation. This typically leads to her brothers laughing and Sophia sitting there with indignation, thinking she knows the answer and is right; a blend of the eleven year old girl and a developmentally four year old child.

Sophia is still so very much infantile. Her emotional maturity is that of a two year old and she still requires so much assistance, twenty four hours a day. This is an aside to the comprehensive medical care she requires; the injections every three hours, the round the clock medications, the skin care, the assistance she needs physically to complete so many basic tasks like bathing, dressing, going to bed, even needing assistance walking up and down stairs. *Note, Sophia ended up in emergency the other day when she fell down a flight of stairs and suffered a major concussion when in the care of someone else who didn’t hold her hand.

The worry, the angst, the fear of her every day never mind her future, hangs over my head like an anvil.

No one can look into your eyes and assure you everything is going to be ok, be alright. Because the reality, that friggen brick wall is right there in front of you. You try to blast your way through, ram it over and over, try to climb it even. And time and time again, you are met with the cold hard truth that when you have a child, are a parent of disability, that there just may be a line in the sand…that the wall isn’t going to move. It is there to stay.

That isn’t to say you can’t make a wonderful garden around it, that you can’t create beautiful graffiti on it’s cold grey. That others can’t come to the wall and sit and enjoy it with you, your child. Because you can…and for your own emotional well being, and for the quality of life of your child, you need to.

Helen Keller said, “I seldom think of my limitations, and they never make me sad. Perhaps there is a touch of yearning at times; but it is vague, like the breeze among flowers.”

It is something I have yet to learn as a parent of disability; to only yearn for what Sophia can do, will do. And not think of limitations, not feel sad. For me, that breeze comes in wind storms, still.

Yet, at the end of the day when I am getting Sophia ready for bed and she tells me exactly how many days are left before a special occasion, or in the morning when she proclaims as usual, that it is going to be a sunny day because she can see that one tiny crack in the clouds…that storm settles into a breeze and I know I am among a flower. It feeds my shameless optimism.

Thursday, October 20, 2011

How do you do it? Defining 'it'

I have written before about the question that I get asked a lot in reference to running a business, parenting three children, tending to a home and of course, caring for a child with special needs. And I am sure there are many of you that relate when asked ‘how do you do it?’. However, I have to wonder if anyone really knows what ‘it’ is?

‘It’ for each one of us parenting, or tending to someone who has any kind of need is so vastly different. Caring for an aging parent, is different than caring for yourself when you are sick, and is different still when caring for a child who has a need. Our ‘its’ are all different, unique to our own circumstances. And none really less or more, just different.

I thought I would share what my ‘it’ is tending to a child with a life limiting illness. Some of the pictures I am about to share may be disturbing, or perhaps, disrupting of one’s perspective of my ‘it’.

Our day begins at 5am, when I am up giving Sophia an injection. Keep in mind, these injections occur every three hours, around the clock. So in theory, I was up at 2am as well.

At 5am after Sophia’s shot, I tend to go back to bed but most mornings lie there semi awake, going through the task list in my head. By 6:30am I am wide awake and the morning hurricane of three children and working parents begins.

For Sophia, herself, her starting gate begins at 7:00am. I get her up, or at least, try to wake her up with kisses and good mornings, to which she will either respond by putting the blankets back over her head or exclaiming as she looks out the window, “Look, Mamma, it is going to be a sunny day!”, even if it is pouring with rain.

I wash Sophia up either by giving her a quick rinse in the shower, or with a wash cloth. Sophia is not ‘dry’ over night and requires the use of pullups and tenas. So, it is important to get her a fresh start.

Typically, by 7:30am, we can count on one of our nurses to knock on our front door and walk in. There was a time I used to worry about my morning hair, or the state of my house and would even get myself up, showered and dressed before they came. I don’t do that as much anymore.

Our nurses prep all of Sophia’s morning meds and help make her breakfast. They feed her in between packing up her lunch and snacks, meds, and extra formula for her day at school.

Sophia is excited about school and is always eager to get through the morning tasks and routines. She ends her pre school time hooked up to a mask with medication in it for her little lungs then brushes her teeth. She then waits anxiously by the front door for the school bus to come and pick her up. My UK nephews affectionately call it ‘the block of cheese’.

Most days, Sophia is able to go to school where she enjoys learning, reading, sharing time with her friends and daily activities in the community. She gets tired and by the time she gets home and is dropped off by the cheese, we know we have a few good hours left before she crashes and burns.

Throughout her day in school, her little fingers get poked to test her blood sugar before every shot and meal or snack. She is constantly hooked up to her backpack which carries a feeding pump and some souped up formula mixture to keep her sugars stable. Toss in those three hour shots and six hour pain meds and she is doing more than reading, writing and arithmetic.

At home, we have the usual dinner time chatter a family of five can create. A lot of yacking, some ‘eewww, I don’t want to eat this’ and a good round of ‘is there any more?’. Ahhh, got to love boys.

By the time 6:30pm comes around, Sophia is exhausted. Though, if you ask her, she will deny it by saying “I’m not tired!” and forcibly raise her eyebrows and open her eyes wide. It has become a bit of a joke now.

And, like the morning routine, it is compiled of syringes, needles, masks, whirls, gigs, creams, gauzes, and of course, plenty of hugs and kisses.

In the course of one day, Sophia requires 8 injections, that is 2,920 needles a year, ten syringes of medication, 3,650 annually and between 8 to 10 finger pokes a day, again no less than 3,650 finger pokes per year. And plus some, should she become sick or require even the simplest of eye creams, or ear drops, antibiotics. Never mind the fact twice a week we have to change the needle catheter in her leg, and every twelve weeks the g tube in her stomach. Oh, and every ten days, the batteries in her hearing aides.

There is more, of course. 365 tenas, 600 2x2 gauzes, 4,200 test strips, 60 feeding bags, 45 feeding tube adapters, 75 insuflon catheters, 364 cans of pediasure, 72 cans of polycose…need I go on? I hope if I every forget a meeting or am running behind, or am late giving you something, you can cut me just a little slack?

So, when you next ask me how do you do ‘it’. You have a slight inside loop on just what that ‘it’ is and all it entails not just for me, but for Sophia. And that is how I do ‘it’, because of this amazing little girl who wakes up in the morning and exclaims, even on the darkest days, ‘Look, Mamma, it is going to be a sunny day!’.

Wednesday, October 19, 2011

Disability Revolution or Disability Revelation?

There are times when I wish I could just put my head in the sand and ignore all the external noise of the world and it’s problems. This past month has definitely been one of those times.

Every day for the past several months, those of us affected by disability, have

been bombarded with one hurdle or another, one exhausting fight after another; the controversy over the recent CLBC closures of group homes, with employment opportunities like the Ridge Meadows Recycling Plant being threatened, and well, yesterday…when the last brick on one of the most horrific crimes against people with disabilities fell.

I am reminded of a quote by Ernest Hemingway, “The world breaks everyone, and afterward, some are strong at the broken places”.

I kind of feel that is where we are within the world of disabilities. With all the controversy, I felt like there was going to

be be a ‘disability revolution’. Let’s stand up in unison, wrap our arms together and storm the powers that be with our mandates, our agenda. Rah rah disabilities!!

Now don’t get me wrong, I still believe we, as families, as communities need to convene our voices, our needs. However, I think we are more at the point of having a ‘disability revelation’ versus a ‘revolution’.

The word revelation is defined as “something revealed, or disclosed, especially a striking disclosure, as of something not before realized.” In a biblical sense, it is defined as when God disclosed of Himself and His will to His creatures.

All the media attention, all the outcry of the last few months means we, those in the disability sector, have been revealed. We have been revealed as passionate, capable, families in need, yes, in need.

We are at the broken places. Ministry leaders have been shuffled, the CEO of CLBC has been removed, and the bricks of Woodlands will soon turn to dust. It does not mean we are fixed, that the pain, the anger, the mistrust has gone away…but we are strong in those broken places.

We still need to convene as families, in community. We still need to develop innovative housing models. We still need to compensate those who have suffered at the hands of others.

We are at the broken places, but we are strong.

And in the words of Abraham Lincoln, “I may walk slowly, but I never walk backwards.” Here is to moving forward, between the cracks, in the broken places to strengthen our world of disabilities and support those in need.

Tuesday, August 23, 2011

Biological Genocide: How Eugenics is making a comeback in the world of Disability

I have had three children and with all three have gone through the mandatory triple screening process that our physicians tuck into a whole pile of prenatal requisitions; it can usually be found before the HIV form, after the ultrasound and blood glucose screening.

And to be honest, I don’t think I even blinked an eye when the doctor explained, in brief, that the triple screen tested for genetic abnormalities including Down syndrome. Well, of course, it did. That is something I needed to know, right? Having a child with Down syndrome seemed like the worst fate, how was I going to raise a child with Down syndrome? Yes, please test me.

Twenty years, three children, two special needs kids later…and I can’t imagine what my life would be like if I had been able to do prenatal genetic testing for autism or any kind of chromosomal abnormality. I know my life would be different.

The Globe and Mail posted a story on Monday titled ‘Deselecting our children’. The article is in reference of Danish headlines to ‘make Denmark a Down syndrome-free perfect society’ by 2030.

In doing some research, I have found a number of articles and references and most use the term ‘eugenics’ in reference to this kind of prenatal genetic testing. Eugenics ‘is the self-direction of human evolution’. Eugenics lost it’s early 20th century popularity when it became associated with Nazi Germany. Eugenics, in my opinion, is a modern day biological genocide.

Dr. Gregor Wolbring writes a great series called The Silenced Targets. He calls eugenics an ‘animal farm’ philosophy where ‘some are more equal than others’. “The community of the ‘disabled’ argues that testing for disabilities, diseases and impairments will increase prejudice against people who are labeled as such. How do other targeted groups feel? Many argue that sex selection lowers the status of women, while selection of sexual orientation would contribute to discrimination against lesbians, gay men and bisexuals.’

In Dr, Wolbring’s paper, it suggests that ‘eugenic decisions stem from socio-economic context and personal or family circumstances, not from the disability or disease or gene ‘defect’.

Another article by Ruth Hubbard on Prenatal Testing and Disability Rights also suggests that this kind of testing does not lie in the disability itself, or prejudice from such or even about “the child at all, rather it is about how one imagines one’s own life from that moment onward. And, just as the decision to abort any pregnancy does not reflect one’s attitude toward people or family life in general, but only toward one’s own prospects at that moment, so it is with the decision not to continue a pregnancy, predicted to end in the birth of a child with a disability one is not ready to countenance at that point.”

I guess what I am trying to say, and what many of the critical thinkers out there are indicating is that the decision to have prenatal testing, to abort a child with a disability or known genetic abnormality is not up to the scientists who are recklessly producing technology to facilitate such decisions, but up to individuals, oh err um PARENTS… who choose to utilize the technology and make decisions based on their social norms. This includes disability, disease, gender, perhaps sexual orientation, and oh, wait, what is next…blue eyes, blonde hair, or perhaps, black hair, brown eyes…long legs, intelligence, artistic, athletic?

Where do we draw the line? As Dr. Wolbring asks “Who decides what is good for mankind?”

I did not ask to have children with special needs, with disabilities, with life limiting illnesses. And it isn’t easy. Each and every day poses it’s own challenges and I know our future will be difficult, different.

But having these children in my life has given me so much more than I could ever have expected. I have learned patience, compassion, tolerance, developed courage I didn’t know existed. My children have impacted community, enhanced the lives of all those around us.

How is that NOT creating a ‘perfect society’? That IS a perfect society…at least in my book.

Saturday, August 20, 2011

The 'Informal Institutionalization' of People with Disabilities: Part Two

The other day I wrote a passionate blog regarding the recent closure of a group home in Richmond. The story has become controversial, not only in the media, but in my life as well.

I live in the world of disabilities, maybe not from a bureaucratic, institutional model, but from a real life, hands on experiential world of disabilities. I am the mother of two of the 697,000 people in British Columbia that have disabilities. Yes, 697,000 people…in our province alone.

After I wrote my blog I received a number of phone calls and feedback, that while everyone agreed what was happening to the four adults living in the home, with the home closure, was horrific, that there was another side of the story. There actually is more than two sides, there appears to be a varied amount of opinions out there depending where in the disability sector you sit.

The group home in question is serviced by the same company that owns the actual home, they are under different names, but they are one of the same. This implies double dipping on part of the service provider / home owner and well, this private company is making money off of disabilities.

Looking into this further, though, DDA, who also services homes in Richmond, was told they must reduce the operating costs for a staff residential home so the budget complies with CLBC funding guidelines. If the service providers fails to do so, the contract is terminated, and put out for tender to others. And in some cases, it means individuals move to another home.

So whether you are a private service provider or an agency like Developmental Disability Association, the reality is, CLBC thinks service provision to people with disabilities can be done for cheaper, less. This can and does, has, compromised the quality of care residents receive.

I am a home owner, I have three children, two of which have disabilities, but even without that experience, in the 20 years I have been parenting, not much has become cheaper! In fact, if you look at the latest release from the Consumer Price Index consumer prices rose 2.7% in the last 12 months; primarily gas, and oh yea, FOOD.

So I am not sure how asking service providers to reduce their fees is in any way reasonable for CLBC to do in our economy. That would be like me asking my staff to do the same work for less pay. Ummm, they would all be bolting for the door.

I still argue that we have to start listening to the reports we have been compiling and not merely asking service providers to reduce their fees, or cost of serving people with disabilities but looking at alternative methods for housing, for servicing the 697,000 people in our province alone.

I am reposting the links I had in my original post regarding the research and recommendations for housing in our province for those in our disability sector. I know from my own perspective, my two children will more than likely live with me for many years until, or unless, a better model of housing exists. Ahhhh, adding that to my list…

In the meantime, the four adults that are now having to relocate are the victims of a system that isn’t working, that doesn’t work, and I challenge the decision makers involved to do the right thing and allow these vulnerable people to simply stay in their ‘home’, a home they have had for 15 to 20 years.

Don’t we ALL deserve that? And until we honor and respect people with disabilities fully, and their families, we have in existence an ‘informal institutionalization’ of people with disabilities occurring in our province.

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