Normally on friday I try to post something “fun”. So today I thought I would share what packing for a morning medical appointment for a medically fragile kid looks like.
You know. Just for fun!
Normally on friday I try to post something “fun”. So today I thought I would share what packing for a morning medical appointment for a medically fragile kid looks like.
You know. Just for fun!
I follow many special needs mommy blogs and Facebook groups. It is always interesting to watch the trends, themes, and general sentiment each group promotes. If I were to describe the tone that I see crossing my Facebook feed these days it would be a combination of the superhero narrative, and sheer anger. Many of the posts that stream across my timeline support blogs and messages that perpetuate the notion of superhero parenting and the theme of spiritual transformation along the journey. We already know that I don’t agree with those blogs as a general, though not absolute, rule.
The other theme I see is anger. A lot of anger. I get that one. I spent a long time being very angry.
One of the most angry posts I have seen in a while was a blog documenting one parent’s backlash against the advice to engage in self-care. There are tomes written about the importance of self-care for parents with special needs kids, and most of us know that we are supposed to take care of ourselves. However, for a collection of parents who have a hard time eating three healthy meals a day and getting a decent night’s sleep, such advice is hard to take, and even harder to follow. This parent’s post practically screamed her anger about receiving advice from people who had little to no insight into the chaos of her life and her difficulty with engaging in personal self-care. I understood this parent’s anger. Most of us are in the position where there are very few people who can take care of our kids, and securing caregivers other than ourselves is complicated and expensive. For many of us, any kind of ongoing and substantive self-care is a pipe-dream.
Today I was running an errand and the person in front of me was complaining about how busy they were. The cashier reminded this person in front of me that they had control over their busyness. Therein lies part of the problem. Society seems to think that we can control the content and busyness of our daily lives. Perhaps those of you who aren’t raising complicated kids can, but we who have kids with complex and severe disabilities often cannot. We spend our days providing care and responding to health issues that we may not have even anticipated. For us, any sense of control in our daily lives often is an illusion. Perhaps we have a handle on things for a while, but it takes very little to topple that house of cards before we are sitting in a heap. Which is why self-care is even more important. And yes, I know I am speaking in paradoxical terms.
For us parent with kids with disabilities sometimes taking care of ourselves means that, at least for a time, we are not taking care of our kid to the best of our ability. I know to survive I had to learn to be okay with that. There are moments when my kid has been parked in front of a TV so I could have a cup of tea and chance to catch my breath. I have sent him to respite knowing full well the care offered was second-rate to my own. You know what? Sometimes that has to be okay. In the end I decided that for me to keep being an effective parent overall I would need accept that there would be moments that my kid was getting slightly less than stellar care. What can I say, I am a realist.
To those parents who become profoundly angry about their inability to engage in self care I would say this. I get it. I really, really do. I understand your anger. I understand your frustration. I know we are telling you to do the impossible. I know what it is like to live months wondering if you would ever sleep or visit with a friend again. I know how hard it is to find someone to care for your child. My kid needs nursing level care. But you know what. Do something for yourself anyway. It is imperative that you find the time. It’s the classic airplane and oxygen thing. The plane is out of control anyway. If you don’t breathe there are at least two of you who will suffer. If you take the time to catch your breath at least semi-regularly before you crash the chances are much more likely you will both be okay.
For my self-care I play soccer three nights a week. There is NOTHING better than kicking the crap out of a soccer ball when you are overwhelmed or frustrated. My husband worries there have been moments I imagine the ball is his head!!! These days I am adding punching to my kicking habit and have taken up karate. My kids find it pretty funny. I was practicing my kata last night and my kids didn’t stop laughing once. NOT ONCE. I was actually getting a little worried they would hyperventilate. Karate and soccer not only maintain my sanity, but keep me in decent physical shape since I also happen to lift and physically manage the care of a kid who is almost as big as I am. So really, in the end, it is also in Matthew’s best interest that I kick and punch.
As Nike says. Just do it!
If you’ve been reading my blog for any length of time you know that I resist the notion of the Erma Bombeck God and kids with disabilities. Bombeck, many years before her death, wrote a vignette that involved God and an angel sitting up in heaven hand-picking special needs children for special parents. In the early years I found this idea affirming and comforting, but in recent years I have rejected the idea on both personal and theological grounds.
A few years ago I stumbled across a qualitative research article that explored this very idea with mothers raising kids with disabilities. Since I find research interesting I got kind of excited. Weird. I know. The research is summarized in a chapter authored by Gail Landsman in a book called Transformative Motherhood: On Giving and Getting in a Consumer Culture edited by Linda Layne if that sort of thing also interests you.
Landsman argues, as I do, that this idea of special parents being chosen for special kids is primarily to support the emotional well-being of parents who are raising able-bodied kids. But it is her rationale for this idea that is quite interesting. She reminds us that in our current world we have this sense that we can control things, including health and by extension the health of a foetus. And in many cases she is right. We can make the sick better. We can do things to increase the chance of a healthy baby. We know we shouldn’t drink or smoke while pregnant. We know to take pre-natal vitamins and folic acid. Some may choose to have pre-natal testing to identify any possible disabilities and some will even chose to abort that foetus. Landsman suggests all of this, taken together, has nurtured this idea that creating the perfect baby is well within our grasp. Our society often forgets, or ignores, the idea that things just happen sometimes to good people who do everything right. Life is not, and never has been, fair despite our need to believe it is.
For Landsman then, if we can create the perfect baby what does it mean for those of us who gave birth to a baby society considers not perfect? You will note I emphasize society here. Many of us “special” parents think our kids are perfect exactly the way they are. Landsman suggests society has two responses. Either the mother is to blame and did something wrong to create a baby with disabilities, or the mother has been uniquely chosen for a special gift because they are a special person.
Landsman argues that parents of able-bodied kids actually buy into both ideas. They will often choose to believe that their child is healthy because they did all the right things thus making them ideal parents and supporting their sense of control. However they will attempt to extend some form of “compassion” to those of us with kids with disabilities by suggesting our kids, seen as less then perfect and healthy, are a chosen gift to a unique and strong parent. This idea also allows many parents of “typical” kids to keep their sense of control while also hanging on to their idea of a benevolent God because that God has chosen parents for kids with disabilities who are uniquely gifted for the journey.
Landsman notes that this thinking then very easily transfers into the notion that God doesn’t give you more than you can handle. Parents of able bodied kids are often quite clear on the idea that they couldn’t handle the demands of a complicated kid. They know there is no way they could live the life many of us live. But those of us with complex kids? We must be different apparently. We are saints and superheroes chosen by God.
It is a nice story – this narrative society has created. Too bad many of us with extraordinary children don’t believe it is true.
This past weekend W5 aired a one year follow-up about parents raising triplets with severe cerebral palsy. Not surprisingly the parents described a life overwhelmed with caregiving responsibilities and medical traumas. The parents had also spearheaded a successful charity which is noteworthy and deserves mention. Threetobe has raised thousands of dollars for stem-cell research geared to addressing neurological impairments.
Unfortunately the segment also shared that one year after the original story aired the parents of the triplets had split. The interviewer, with appropriate dramatic flair, asked the mother if any marriage could possibly survive the caregiving demands with which they lived. I was relieved when the mother replied that many marriages survive, her’s didn’t.
There is this pervasive myth that raising a child with severe disabilities increases a couple’s risk of divorce when the truth is that among parents with children with disabilities the rate of divorce is no different than that of the normal population. Let’s not get too excited here. That means that half of all these “special needs” marriages will end in divorce. Marriage, it seems, is a flip of the coin. This first myth about “special needs” marriage is countered with a second myth, that if your marriage has survived it must be somehow extraordinary. Ah, yes. It didn’t take us long to get back to the saints and superheroes narrative. And like many of the myths that describe our extreme caregiving journey, this one isn’t particularly helpful.
As an aside my husband has just walked by and read this post thus far. He advised me that I should probably let the secret out. He actually IS a superhero which is probably why our marriage has survived. But I digress.
Marriage is hard work. Like really, really hard work. Those of us raising special needs kids don’t own the story rights to difficult journeys. Life has a habit of throwing all sorts of curveballs at us that throw all those wonderful fairy-tale like plans we start out with into total disarray. Illness, disability, job loss, financial hardship, mental illness, death, isolation, abuse, infidelity or even just the fact that people and goals can change over time – all those can strain and break even the best relationships. Life is hard and one of the things I heave learned during my own journey is that most of us live through some pretty difficult stuff that can stress any marriage to its core. I am not convinced those of us with special needs kids are a whole lot different. Blaming kids is never a good idea. The challenges with which we live are probably just more visible to the general public giving lots of fodder for the construction of these pervasive, and not particularly helpful, myths.
About two years ago I was at a conference dealing with childhood disability. At one point the speaker cited the statistic that “special needs” marriages end at roughly the same rate as all other marriages. One parent in the audience became quite upset by this idea. He believed that citing this statistic negated the extraordinarily hard work that had been necessary to keep his marriage intact. For him, the myth was important because it made the survival of his marriage both unlikely and unique. But for me this parent completely missed the point. Keeping any marriage intact is extraordinarily hard work. As extreme caregivers there is no doubt our lives are very difficult. I am brutally clear on that point. But we are not the only people familiar with lost dreams, difficulty, tragedy, and so on. We are not the only people who have had to work very hard to keep our marriages intact, or who have had to live with the profound loss of divorce when that hard work wasn’t enough.
Ultimately my point in all of this is, like the mom on W5 said, some marriages survive life’s challenges regardless of those challenges, and some do not. Judgement and unhelpful narratives really cloud the issue. Very good people who worked hard at their relationship get divorced, and very average people remain married. Dooming a marriage because it involves parenting a special needs child (or three!) is not helpful. Neither is creating a narrative that suggests that any marriage that survives extreme caregiving is somehow unique and extraordinary. Fairy-tales and myths about life and marriage are not helpful. Let’s get real.
This past Saturday I sat down to read the newspaper with my morning coffee and once again read about a mother who had attempted to kill her child with severe disabilities. There is a publication ban so we don’t know the names of the individuals involved. What the news tells us is that the mother of an 18 year-old son with severe autism, whose behavior at times became violent, has spent the last 18 months in prison after the attempted murder of her child. In a desperate act she overdosed both her child and herself on codeine after watching her partner resort to punching her son into submission during a severe behavioural outburst. The presiding judge, Justice Colin Westman, in an act of humane compassion refused to allow the mother to serve additional time and has allowed her to return home. According to the Waterloo Region Record the judge, echoing many of my previously voiced thoughts on the subject, stated that our communal lack of support, including financial support, for parents raising complex children makes us all responsible. His direct quote, “shame on us as a society”. We all know I agree.
The prosecuting attorney, Jane Young, alleged that the mother created the dire situation herself by refusing to access professional supports, arranging her life to support her son, and resorting to self-medication to cope. Ms. Young alleged that it was these choices that led to the mother’s overwhelmed state eventually leading to her utter inability to cope and attempted suicide/homicide. Ms. Young goes on to harshly judge the mother calling her “misguided”, “stubborn”, and “very unrealistic”.
Are you freaking kidding me?
Where do I even begin?
Anyone raising a complex child is fully aware that the resources Ms. Young so confidently allege could have made a difference to this mother simply don’t exist. Services when available are fractured and inadequately funded. Parents are bounced between multiple ministries and funding, none of which offer adequate support. Throw in the fact that parents raising kids with diagnoses leading to behavioural challenges are often blamed for their kids’ behaviours, making the system at times punitive and judgmental (a lot like Ms. Young), and you have a recipe for disaster. Is it any wonder we keep reading these news articles?
Many children upon turning 18, like the child in question, lose all their pediatric supports including respite support and funding, to be replaced by adult services that are beyond inadequate or don’t exist. I live in fear of my son’s 18th birthday and my kid has above-average resources. Wait lists for services, care, and funding, are brutally long. Parents, including those in crisis, may wait years for a long-term care bed while struggling to manage the care of a child who is becoming larger, harder to care for, and increasingly complex. In other words Ms. Young, where are these supports you suggest could have prevented the mother’s overwhelmed state?
Ms. Young further alleged that the mother became unrealistic about her ability to cope. She labeled the mother misguided and stubborn. It is this part that really gets my goat. Parents like this mother, and like me, get up every day for years and decades and live lives that are unsustainable and unrealistic. It is the air we breathe. The world has been telling us since day one of our child’s life that it doesn’t matter how unrealistic the care demands are we must keep doing what we’re doing. In fact, if we advocate for more resources for our children we are told we are “unrealistic”, “stubborn”, and “misguided” about the availability of resources. Sound familiar? A few weeks ago I wrote about a mother who was labeled as a “trouble mom” because she had the audacity to suggest her child needed more consistent nursing support. It appears parents will be condemned regardless.
Extreme parental caregivers often live close to the proverbial edge. We are repeatedly told by a world that doesn’t care, and won’t help, we need to keep functioning. The garbage about not being given more than we can handle is just that, garbage. We don’t sleep. For decades. We lift 120lb kids. Daily. We are financially stretched. We advocate to a world that tells us we are being difficult and unreasonable when we are simply trying to support our vulnerable children or relieve our overwhelming burdens. We quit our jobs. And you know what? We do not have a choice. We do all this because we love our children. But we also do it because society has made it unbelievably clear that they aren’t willing to help in any substantive way. Our lives are unreasonable because society seems to think that we can do it all and then feels justified passing brutal judgment when we inevitably cannot. Look at the Latimer case. Look at the Ali case. How many times do we need to tell this story? How many times will I write this blog post?
And then there is the final point. The legal system suggests that to prosecute these parents any differently than any other attempted murder/murder charge diminishes the value of a disabled child’s life. I am the first to vehemently assert that my child is fully human and fully valuable and should be treated as such. But it is both galling and unbelievably ironic that it is only when a parent understandably snaps that our society demands our children be treated equally. It is only when a parent finally falls apart that our children are deemed worthy of equal treatment. Until that point parents and children with extraordinary needs are told day in and day out that we are unworthy. We are not worthy of adequate funding. We are not worthy of adequate supports and care. We are not worthy of communal compassion. We are not worthy of having a voice in important conversations. We are not worthy of inclusion, or an inclusive world. Apparently the only thing we are worthy of is unrealistic expectations and harsh condemnation when we fail. We cannot win.
These tragedies, and make no mistake they are tragedies, do not begin when a parent snaps. They have been years in the making as society stands back and refuses to help and then inevitably judges overwhelmed parents by unrealistic standards they themselves would fail to meet. Once again we have abandoned a parent for 18 years and then crucified her for understandably and inevitably reaching an end point. Justice Westman’s response, while affirming and a breath of fresh air, is too little, too late.
These stories remain our collective shame. How many times will I need to write this tragic rant?
As parents of extraordinary children we are often asked to share what parenting our children has taught us. For many reasons, several already discussed here on this blog, I resist these sorts of questions that romanticize this difficult journey and force parents to ignore chaos and offer a sunny soundbite usually designed to make others feel good and virtuous. As Craig Davidson author of Precious Cargo: My Year of Driving the Kids on School Bus 3077 answered when asked that question during a recent CBC interview, “these kids are not mini-Obi Wan Kenobi’s, it is not their job to teach us the great mysteries of life”.
However I did want to share some of the things I have discovered while caring for my son.
1. 60cc syringes can double as turkey basters in a pinch.
2. “How did you get poop THERE?” is a perfectly reasonable question to address to my 17 year old son.
3. “How did I get poop THERE?” is an equally reasonable question.
4. Hot coffee and really good hand lotion are signs that there is a God and She loves us.
5. There is nothing worse than the smell of puked Peptamen.
6. 6occ syringes made excellent water guns for children whose pacifist mother did not allow toy guns. This particular problem was eventually rectified when their father came home with an arsenal of super soakers telling me that such toys were essential for a “normal” childhood and were not likely to turn my children into mass murderers. Thus far my (now 15, 17, and 19 yr old) children are not mass murderers and the super soakers have been enjoyed by young and old alike.
7. You can read Robert Munsch books for 17 years continuously and never get tired of the stories. They are that good.
8. Tinkerbell movies can be equally as effective as morphine. Makes you wonder if Disney is doing something subliminal we can’t understand.
9. The Wiggles and Teletubbies videos played endlessly qualify as torture and guidelines for their safe use and consumption should be mandated by the UN.
10. I was apparently put on this earth to do laundry.
Call me crazy, but I like my coffee hot.
A while ago I noticed that coffee seemed to taste better while consumed in my car. It was usually take-out coffee so I went through this whole analysis of whether it was the coffee, the cardboard cup, or what, that made the joe taste better. And then it dawned on me. The coffee was HOT. When drinking coffee in the car I couldn’t get distracted by life. I had nothing else to do but to drink the darn coffee as I drove.
I love weekends. On weekends I have a nurse start at 7am so I am not responsible for Matthew’s morning care. On weekends I get to drink my coffee piping hot. I usually have a second cup and drink IT piping hot. Hot coffee might well be my bliss. What can I say. I am easy to please!
Because during the week my life usually looks like the picture below.
The cup of coffee you will note is full. It is also stone cold.
Every morning I make a pot of coffee with the plan that I will drink a cup while it is still hot. What can I say, I live in a state of perpetual hope. Some might call it delusional I suppose. Every morning I take that cup into Matthew’s room to start his morning care. I assume I will drink sips of the hot coffee between priming his feeding tube, drawing up meds, maybe even while doing his nebulizer treatment. And every morning I get caught up in the busyness of morning care and the darn coffee becomes cold. Another opportunity lost.
In two more days it will be Saturday and I will enjoy not one, but TWO, steaming hot cups of coffee. You see. Perpetual hope!