She’s Trying To Kill Me

You’re all aware of Snowbell, my evil cat.  Oh, don’t be fooled by her ridiculously cute chipmunk face and strangely short legs or her blue eyes and kittenish ways.  No, no.  I’m convinced that she is really trying to kill me.  What other explanation could there be for her behavior?

Snowbell the Diabolical has a plan.  What is her plan? To deprive me of sleep and induce some kind of psychosis that will result in my death.  She is winning.  Her strategy? She pretends to have an obsession with her food dish as I’ve already described..  As soon as she sees the bottom of her dish–even if it’s full of food–she panics and runs around the house mewing.  She searches me out, cries, and leads me to her dish in a flustered, anxious state.  I stare at her dish.  I observe that it does indeed have food.  Sure, a bit of food has been eaten most likely by Snowbell herself, but Snowbell must perpetuate the deception that she’s obsessive.  The dish must always be full lest she display panic.

Enter Ginger the Buxom, our other cat.  I suspect that Ginger is eating the food, too.  Well, of course, she is.  She lives here.  She is allowed to eat from the food dish and eat more than her share she does! This would account for her present girth.  Perhaps Snowbell has just struck a bargain with Ginger.  Maybe Ginger is in collusion with Snowbell and she, too, is trying to kill me by pretending to enable Snowbell’s obsession with the food dish.  Ginger eats just enough of the food to reveal the bottom of an otherwise full dish, thus, giving Snowbell a reason to have multiple daily and nightly panic attacks.

What did Snowbell do last night? She pretended to sleep peacefully on my feet.  Around 2:30 AM she began to try to kill me…yet again  She lightly scratched at the wall which produced a very annoying sound akin to a cat filing their claws with sandpaper.  I ignored it.  Eventually, she scratched more  loudly.  This must be when she began filing her claws with a Dremel tool.  I ignored her still.  She proceeded to claw the box springs.  At this point, I began to fantasize that I was Lara from “Dr. Zhivago” and was wearing Snowbell as a hat.

Julie Christie  Doctor Zhivago (1965)

Oh what a warm pelt you have, Snowbell.

Then Snowbell appeared on the bed.  She stood on me and cried.  I ignored her.  She stood on my chest and cried.  I played dead.  She sniffed my face to check for life.  She then turned her attention toward my husband.  He is easy prey because he’s predictable.  He isn’t as determined and tenacious as I.  All Snowbell has to do is scratch his face, and she’ll get a response.  She looked at me in the darkness, and then she quietly stalked over to his side of the bed, sniffed at him, and then attempted to scratch his face! I, however, grabbed her and locked her out of the bedroom before she could make her mark.  I thought I’d won the battle.  I thought it was over.

I have been trying to defeat this cat, but, so far, she has bested me.  I have ignored her.  I have locked her out of our bedroom.  I have tried to put her on a feeding schedule.  Nothing has worked.  It doesn’t matter what I do.  She comes for me every single night and begins the nightly hunt just like the night before.  I think she likes it.  Last night, she kicked my ass.  I was up five times.  FIVE TIMES.  I ignored her.  I locked her out of the bedroom.  This time, however, she upped the ante by caterwauling by our door.  O the noises that damn cat produced! I let her back in.  She started the Scratching Protocol again right where she left off.  I locked her out again.  She started howling again.  This went on until 6 AM until I just gave up and got up.  As soon as I got up, she ran into the kitchen and sat by her bowl.  There was food in it, but the bottom was exposed.  She looked at me anxiously.  I pointed at her dish and said, “I am not giving you more food.  You will eat what’s in your bowl before I give you more food.  Stop this nonsense, Snowbell!” That cat had the insolence to eat the food in her dish after depriving me of four hours of sleep.

Guess who wants to kill whom now?

Resources:

How To Tell If Your Cat Is Plotting To Kill You?

The State of Grace

Grace had a check-up with her wonderful neurologist, Dr. Fabulous.  We went over all the basic lab work done to see if any of the primary mitochondrial disorders were present.  None were.  This is good news.  Mitochondrial disorders usually cause a shorter life span.  The addition of the Topamax at 100 mg a day has almost completely knocked out Grace’s migraines.  Gone are the seven to ten days killer headaches that completely debilitated her.  Success! The swallowing problem is still an issue as is the hypotonia.  She still walks like Shaggy from “Scooby-Doo” when she’s tired, and she can’t swallow food or speak clearly on some days.  I know that this is the hypotonia in action, but I don’t know why she’s hypotonic outside of a possible EDS diagnosis.

So, I had a moment of brilliance sitting with Dr. Fabulous.  Grace struggles with constipation.  I shouldn’t say it like it’s an occasional thing.  It’s more like a lifestyle if constipation can be a lifestyle.  When she was little she would lie in bed and weep while pulling up her knees.  I would try everything I could think of to ease her pain, but nothing worked.  Finally, I took her to our family pediatrician fearing the worst whatever “the worst” might be.  Her torso was X-rayed, and, as it turned out, she was completely backed up from stem to stern.  Our pediatrician scratched her head in amazement.  How does such a small child achieve such incredible blockage? I recall her asking me if Grace ever used the bathroom? I shrugged.  She was four.  I didn’t exactly check the toilet anymore.  How exactly were we to solve the problem? Grace’s doctor prescribed repeated daily Fleet’s enemas and Miralax.  Aaaaaw yeah….what kid, or adult for that matter, doesn’t love the word “enema”? My skin crawled.  I have many a childhood experience with the dreaded e-word being an undiagnosed Celiac until my mid-30s.  The thought of putting Grace through repeated enemas made me feel ill, but the thought of Grace never pooping again made me feel just as ill.

We went home and hit the bathroom.  Grace was brave.  I was brave.  We did everything the doctor ordered.  The kid never pooped.  Not once.  I think I gave her an entire container of Miralax and ten enemas to no avail.  Suddenly, the light went on.  If I have Celiac Disease, then perhaps Grace might as well or, at least, non-Celiac gluten intolerance? So, I took her off gluten.   In a few weeks, she had achieved regularity.  It was rather astonishing.

So, here we are today, and Grace is back to complaining about that mystery pain in her abdomen.  It’s not all the time as it was in her pre-school days, but it seems to strike at night as it once had.  I ask her if she’s going to the bathroom, and she can’t recall.  Hmmm.  She indicates that it might be difficult.  Of course, she’s on all this medication.  That might have something to do with it.

So, where was my stroke of genius? I asked Dr. Fabulous if Grace’s observed hypotonia could be internal as well.  Could Grace be experiencing a hypotonic bowel? Dr. Fabulous looked at me and said, “My gosh! Yes, she absolutely could be! It’s smooth muscle, but in every child I’ve ever worked with who has hypotonia, they’ve always had hypotonic gut issues.  Great connection.”  I think I preened on the inside a bit.  We’ve been trying to figure out the cause of Grace’s bowel issues for ages, and no one has been able to give us a decent answer! The solution? There isn’t one.  You can’t fix a hypotonic bowel.  We had already changed her diet which would have been suggestion #1.  Now, we need to add Miralax to her daily regimen.  Miralax isn’t a laxative.  It draws water into the bowel to promote stool softening so that people can “go”.

Why talk about all this? Well, children with neuropsychiatric disorders like schizophrenia spectrum disorders and even bipolar spectrum disorders–particularly of the early onset variety–will often have other health issues.  The 22q11 deletion is not uncommon to children with early-onset schizophrenia.  With genetic deletions come other health problems like muscle and gut problems.  I watched Dr. Fabulous pace the office when we were talking about the lab work and Grace’s several health issues.  She was chewing her lip.  I think that she believes something else is at play on a more foundational level, but she doesn’t know what it is yet.  So, she is ordering another neuropsychological work-up to see where Grace’s functioning is at now.  It’s been two years since she’s had one.

If you have a child with bipolar disorder or any kind of schizophrenia spectrum disorder, make sure that you get a neuropsych done.  That is one of the best things that you can possibly do for your child.  The wait is often long for a good neuropsychologist, but you will want the data from the testing to see exactly where your child’s strengths and deficits are.  Because white matter is lost over time in schizophrenia (and the experts are still wrestling with the exact nature of schizoaffective disorder in children), it’s absolutely necessary to get neuropsychological testing done every few years in order to see if your child has lost ground or maintained it.  Two years ago, Grace was in the prodromal phase of her illness, and her working memory was at 3%.  Grace has experienced a decline in her functioning in the last two years so another run of testing will determine where her decline has manifested, and this will let her team know where to focus their efforts.  It is for this reason that I believe it is a very wise decision to have a neurologist on your team particularly if your child has migraines.  Finding a worthy pediatric neurologist, however, is something of a herculean effort as you can read on this blog.  When we did, however, I swear, the angels sang.

So, it looks like we’ve got more testing in our future,and Grace will be drinking Miralax daily.  But, she no longer has the crippling migraines.  I’m also adjusting her diet and observing if there are improvements.  We shall see…

B12 Deficiency and The Paleo Diet

I came across Chris Kresser recently.  He’s been around for a while, and he’s just released a new book, Your Personal Paleo Code.  The Paleolithic Diet is reaching fad status now, and I usually stay away from fad diets.  After what Dr. Terry Wahls accomplished with supplements and the Paleo Diet, however, I had to sit up and pay attention.  Dr. Robert Lustig even supports the Paleo Diet.  These people aren’t idiots but neither are some of the naysayers.  For the past few months I have continually run into the Paleo Diet and ignored it until my neighbor, a registered dietitian, recommended I look into it.  Then Chris Kresser released the aforementioned book.  I went back to his website.  What did I have to lose? The dude is no slouch!

I bought the ebook because I’m a Kindle junkie, and then I noticed he had seven free ebooks all addressing different health issues.  When I was in high school I just knew that I was going to medical school.  A seizure disorder thwarted my plans.  Chronic sleep deprivation, medical school and residency don’t go together.  So, I chose differently.  Consequently, I now find myself doing all sorts of reading about health in an effort to see if I can help Grace feel better and improve my own well-being.  It’s something, right? The first ebook I read was about B12 deficiency.  It’s a quick and dirty read.  You’ll be done with it almost as soon as you start, but if you have any issues with depression, anxiety, cognitive slowing, memory loss, or neuropsychiatric conditions, then you’ll want to read this ebook.

What does Kresser have to say?

What do all of these diseases have in common?

  • Alzheimer’s, dementia, cognitive decline and memory loss (collectively referred to as “aging”)
  • Multiple sclerosis (MS) and other neurological disorders
  • Mental illness (depression, anxiety, bipolar disorder, psychosis)
  • Cardiovascular disease
  • Learning or developmental disorders in kids
  • Autism spectrum disorder
  • Autoimmune disease and immune dysregulation
  • Cancer
  • Male and female infertility

Answer: they can all mimic the signs and symptoms of vitamin B12 deficiency.

He starts off with this:

Data from the Tufts University Framingham Offspring Study suggest that 40 percent of people between the ages of 26 and 83 have plasma B12 levels in the low normal range – a range at which many experience neurological symptoms. 9 percent had outright deficiency, and 16 percent exhibited “near deficiency”. Most surprising to the researchers was the fact that low B12 levels were as common in younger people as they were in the elderly.  That said, B12 deficiency has been estimated to affect about 40% of people over 60 years of age. It’s entirely possible that at least some of the symptoms we attribute to “normal” aging – such as memory loss, cognitive decline, decreased mobility, etc. – are at least in part caused by B12 deficiency.

Why is B12 deficiency under-diagnosed?

B12 deficiency is often missed for two reasons. First, it’s not routinely tested by most physicians. Second, the low end of the laboratory reference range is too low. This is why most studies underestimate true levels of deficiency. Many B12 deficient people have so- called “normal” levels of B12.

Yet it is well-established in the scientific literature that people with B12 levels between 200 pg/mL and 350 pg/mL – levels considered “normal” in the U.S. – have clear B12 deficiency symptoms. Experts who specialize in the diagnosis and treatment of B12 deficiency, like Sally Pacholok R.N. and Jeffery Stewart D.O., suggest treating all patients that are symptomatic and have B12 levels less than 450 pg/mL. They also recommend treating patients with normal B12, but elevated urinary methylmalonic acid (MMA), homocysteine and/or holotranscobalamin (other markers of B12 deficiency).

In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country.  (B12 Deficiency)

If Kresser’s observation about Japan’s Alzheimer’s and dementia lower rates in relation to B12 is sound, then I feel shocked.  I thought about it and decided to do some research on B12 and schizophrenia.  Had anyone done any studies? Were there any results? Yes.  In March of 2013, the results of a study were published in JAMA wherein 100 patients with schizophrenia were given B12 and folate:

“The symptoms of schizophrenia are complex, and antipsychotic medications provide no relief for some of the most disabling parts of the illness. These include negative symptoms, which can be particularly devastating,” says Joshua Roffman, MD, MMSc, of the MGH Department of Psychiatry, corresponding author of the JAMA Psychiatry paper. “Our finding that folate plus vitamin B12 supplementation can improve negative symptoms opens a new potential avenue for treatment of schizophrenia. Because treatment effects differed based on which genetic variants were present in each participant, the results also support a personalized medical approach to treating schizophrenia.”

After looking around the journals, I found that there is research being done on folate and B12 in relation to dementia and schizophrenia.  It seems that there is a genetic mutation that affects the metabolic pathways which affects folate metabolism, and this mutation directly affects the negative symptoms of schizophrenia.  There is a connection between elevated homocysteine levels and low folate and B12 levels.  It’s all very complex.  Needless to say, B12 and folate matter.  Other countries are doing better than we are.  This is an easy fix.

Resources:

Randomized multicenter investigation of folate plus B12 supplementation in schizophrenia

Dr. Terry Wahls and The Wahls Protocol: Dr. Wahls wrote her first book, Minding My Mitochondria, and it is now nowhere to be found.  No one wants to give it up.  It was a runaway success, but the publishers will not release any more editions because Wahls is releasing her second book The Wahls Protocol in March.  Wahls theorizes that MS is a mitochondrial disorder at heart, and that’s how she treated her own illness to get well.  Keep in mind, Grace’s neurologist thought that her illness might be mitochondrial in nature as well.

Dr. Robert Lustig: Dr. Lustig’s talk on sugar, Sugar: The Bitter Truth, was a Youtube sensation, and it’s now a short book.  I have the book.  I recommend it.  You can’t approach health, healing, and well-being without taking a look at the standard American diet (SAD) of which sugar is a huge part.  If you really want to feel horrible about eating sugar, then read this study: International Variations in The Outcome of Schizophrenia and Depression in Relation to Dietary Practices: an ecological analysis.

Chris Kresser: Kresser’s website is full of ebooks, recipes, links to his podcasts, and all sorts of other resources.  Of all the people recommending the Paleo Diet, I think Kresser is the most centrist in his approach.

Coping Tutor

I just stumbled across this new app while I was doing some research on B12 and schizophrenia.  Did you know that B12 and folate help with the negative symptoms of schizophrenia? B12 is our friend! I’ll post all the information when I have it together.  Anyway, Coping Tutor is an app for people with schizophrenia.  I signed up Grace for a 14-day trial, and it uses CBT to teach you how to deal with your positive symptoms particularly the symptom of hearing voices.  Grace does not hear voices.  She hallucinates.  The only thing she ever heard was the footsteps of the men chasing her.  I think this is a great idea, however, for empowering people.  Plus, it connects you with a larger community of others dealing with schizophrenia spectrum disorders.  You’ll know that you aren’t alone.  That’s fabulous.

So, what do you get with Coping Tutor? Tutorials and games, a daily log to record incidents of hearing voices (or I suppose you could record your hallucinatory events), CBT training in the form of thinking styles (i.e. cognitive distortions), and daily CBT lessons.  This would be a great app for people who can’t access therapy often.  I’m also imagining that this app is for people who lack support in their daily lives.  Sometimes we have to create the environment that we want for ourselves by seeking support elsewhere–even in app form.  That saying, “Be the change that you want to see in the world,” seems to apply to many of us.  We all have to start somewhere when we are looking to create change.  If you can use an app and you’ve got the desire for something better, then Coping Tutor just might be for you or someone you know.

Coping Tutor

Fail

In which my husband tries to encourage me

“Babe, you look tired.  Tired and…shiftless.”

“Tired and shiftless?”

“Yeah, tired and shiftless.”

“Shiftless.”

“Doesn’t ‘shiftless’ mean ‘in need of a pick-me-up’?”

“No! It means lazy and indolent.”

“Oh God, no, I didn’t mean that! No, you look…uh…uh,”

“Choose your words wisely.”

“You look beautiful and resplendent in that…old, blue robe that you always wear.”

“Right.”

Five minutes later…

I turn on the Keurig to make a cup of coffee feeling that familiar craving after my husband’s subtle suggestion that I look tired and in need of a pick-me-up.  I suddenly hear a sound that I can only describe as one of my kitchen appliances peeing on the counter.  I turn around and observe that I forgot to put my coffee cup under the Keurig while it was brewing my coffee.  Hot coffee is streaming all over my counter.

“OHMIGOD! I forgot to put a cup under the Keurig! I AM shiftless!”

Parenting A Teenaged Girl

It seems like our kids make developmental leaps overnight.  There’s nothing subtle about it.  They’re like growth spurts.  One day, your child is short and her jeans fit as they should.  Two weeks later nothing fits anymore, and you’re scrambling to find the money in your budget for a new wardrobe for your child! This is how it feels with Doireann.  She’s about to turn 17.  I remember turning 17.  It felt monumental to me.  I wasn’t just a kid anymore.  I wasn’t an adult either.  Seventeen feels like some weird developmental limbo.  Kids make a lot of weird choices when they’re 17 many of which aren’t so awesome in large part, I think, because they know that they aren’t exactly children anymore.  They don’t, however, have the life experience, wisdom, or brain power to be out there making adult choices either.  There’s a reason most of us look back on high school and shudder.  It’s fuckin’ hard.

I think it might be harder if you’re an only child or a first born.  If you’re an only child, then your parents are entirely focused on you.  I was an only child with the condtion of having two older step sisters one of whom was sleeping with her boyfriend.  My mother found The Pill in her room, and, suddenly, no one cared what I was doing.  Score! My other stepsister made it her goal in life to make my mother’s life Hell on Earth since that was what my mother was doing to her so she sneaked out at night, used drugs, and had lots of sex as well.  She drove her father crazy and kept my mother busy for years.  Score again! I’m being sarcastic here, but you get the point.  All the attention was off me.  I went from being an only child to the youngest of three girls.  Suddenly, I was able to watch two older girls make mistakes and learn from them.  Only and first born children don’t have that privilege.  They are the guinea pigs.  When we parents screw it up with our parenting styles, we usually do it with our first borns.  Sure, we can learn from our mistakes and not repeat them with our other kids, but the damage has been done.  I’ve done a lot of apologizing with Doireann–“I’m sorry.  That approach did not work.  If you felt shamed by what I just said, I’m really sorry.”  Then, it’s off to bed I go where I replay the incident in my head in slow motion, paying close attention to the look on her face when I unintentionally hurt her, and I feel terrible and guilty.  O, parenthood.

I have actually apologized to Doireann for her guinea pig status.  I have apologized to her for being the one to go first.  I have apologized to her for seeing my parenting style change over the years because I’m learning and improving as I go.  I don’t parent her younger siblings the same as I parented her because I know more now than I did when she was younger.  I made more mistakes parenting her.  I have told her that this is obviously the goal of growing older.  We grow wiser and get better.  In the back of my mind, I’m trying to play this card for her–“You never let ME do that! I never got away with that!”  She’s never said anything like that, and she will not doubt remember things differently than I.  I don’t want to be the mother that says, “It didn’t happen that way.  You don’t remember it the right way.”  That’s gaslighting and crazymaking.  I want to be supportive and helpful.

Doireann had a breakdown last night.  I think it’s typical of the age.  I think Doireann cries once a year.  She cried last January as well.  She is a high achiever.  She takes all IB/AP classes.  She’s involved in theatre.  She’s in Science Olympiad.  She’s never home.  I ask her often how she is.  She’s a one word reply girl.  “Fine.”  “Tired.”  “Good.”  She works on the weekend for our neighbor, John, as his assistant, and he makes good use of her time albeit the tasks are often menial and disgusting.  He texts her with tasks like “Clean out my fridge,” or “Clean my oven.”  It’s good life experience.  Last night, however, she had a massive panic attack that culminated in an hour of crying at the dining room table.  She said that she hated school.  She hated everything about it.  No matter what she did it didn’t matter because there was always more work to do.  The work never stopped.  It didn’t matter if she graduated because then it was off to college to do more work in a cramped room with a horrible roommate most likely.  Then, she had to get a job where she would do even more work.  Nothing ended.  It was just work, work, work, work.  What was the point? Sometimes she just wished that she didn’t exist so that the work would go away.

I tried to penetrate her thinking, but anxiety isn’t rational.  She was spinning like a top.  I asked her who told her life was like this, and she had no answer.  She kept saying that she had to do well.  Like a mantra.  I asked her who told her this.  “The school.  They always tell us this.  We have to do well or we won’t go to college.”  That makes me want to pull my hair out.  I try very hard not to hate anything or anyone, but I’ve had just about enough of my school district.  They seem to victimize everyone.  Prey upon the high achievers until they break.  Prey upon the low performers until they stop performing altogether and their parents remove them.  Achievement and education are NOT the same thing! Why does no one seem to know this? She said that she wasn’t good at anything else but “doing well”.  She sucked otherwise.

As a parent,  this was hard to hear.  She sucked otherwise? I finally had to ask her if she believed that her worth was tied to her performance.  No answer.  I tried to punch some holes in her perceptions about performance and her future.  She continually said that she wouldn’t do well in life and be successful if she didn’t do well in high school.  Finally, I had to tell her that many people find their way differently.  Einstein dropped out of high school before deciding to go back a year later.  Bill Gates dropped out of Harvard.  Ben Franklin and Thomas Edison were high school drop-outs.  Even Walt Disney dropped out of high school as well as Charles Dickens!  I’m not advocating not pursuing education.  I’m simply saying that intelligent, creative people often don’t find their way in life by traditional roads.  I had to take a semester off during college due to a serious health condition, and I was none too pleased to do so.  I thought my life was over, but I went back and finished my degree.  I did well! And you know what? My high school performance had absolutely no bearing on my college experience.  None.  What the hell are high schools telling young people today? Is fear and intimidation the best way to motivate adolescents?

In the end, my husband and I discussed possibilities, strategies, and truth, and I discussed the idea of containment with her which is a DBT strategy (Dialectical Behavior Therapy).  It’s an excellent coping strategy for anxiety, and it works.  It actually grows new neural connections.  Today, she is taking a mental health day and staying home to catch up on homework that she avoided doing for THREE MONTHS.  Just one assignment.  But, apparently, she hates doing it so much that she avoided it for three months.  It’s due on Wednesday.

Parenting is hard.  Being almost 17 years-old is hard.  High school is hard.  Being the oldest girl in a family of girls where every one of your siblings has at least one DSM-IV diagnosis is really hard.

Isn’t life interesting though?

Dreaming A Little Dream

I come across all sorts of articles on a daily basis expressing worldviews on what it’s like to be _________.  Fill in the blank.  It’s the Op-Ed on My Life article.  These articles aren’t meant to enlighten and bring others into the fold.  They seem to be meant to further alienate and silo the human experience.  Someone feels offended by someone else’s research or point-of-view and has to declare that they won’t stand for it.  One group of people dislikes Simon Baron-Cohen’s research on Theory of Mind (ToM) as a marker of autism spectrum disorders (ASDs), for example, because it somehow implies a deficiency in cognitive empathy.  Not my child, they shout! And a new Weltanschauung is spewed forth.  Another clique in the world at large is formed.  We must define ourselves by yet another check box.  Do you believe in Theory of Mind? What’s your stance? Violence in schools runs rampant.  More questions.  What’s your stance on gun control? The ObamaCare website turns out to be one giant Charlie Foxtrot.  What do you think of universal healthcare? What’s your stance on peanuts in schools? Do you really let your child eat GMO corn? Don’t you know that sugar is a toxin? Gluten will kill you! And...andand

These questions, accusations, and constant assessments don’t create unity.  These articles don’t help us understand each other.  They polarize us.  If it’s not working mothers vs. stay-at-home moms, then it’s the special needs parents vs. the parents of “normies”.  One parent shouts out, “You couldn’t possibly understand my life! You leave your children with a nanny all day and trot off to work with the insouciance of some libertine! I actually care about my children!” Then another parent shouts back, “I like working! Besides I have to work.  At least I’m not letting myself go! I’m a good example to my children of what a woman can be.”  Then comes the coup de grâce: “Right.  When you see them!” Between the guilt-tripping, moralizing, and one-upmanship that I hear and read, it’s no wonder that alienation and loneliness are on the rise.  Parents of special needs children are putting out books entitled Shut Up About Your Perfect Kid!, and successful career women are putting out books like Lean In suggesting that we could break the glass ceiling if we just do more.  Commit! Really just try harder.

Try harder.

Isn’t that what we are all doing already? It seems to me that no matter who you are, where you live, your tax bracket, or your genetic profile, you are not going to get out of this life without hitting rock bottom a time or two.  Or three.  Or more.  No matter how hard you try.  This is the nature of the human condition.  Suffering is a certainty.  Not a suggestion.  Why are we pairing off, labeling ourselves and our children, and pointing fingers at each other when what we really need to do is put some of our differences aside and share a meal?

Peel away the political posturing, cynicism, resentment, judgmentalism, and NIMBY (Not In MY Backyard!), and who are we? We’re people.  Plain and simple.  We’re human beings with hopes and dreams for ourselves and for the next generation.  Yes, I have a child with an ASD.  She was born screaming, and she didn’t stop for two years.  My third daughter was born with all her fingers and toes intact.  She was healthy.  She met her milestones.  My husband and I dreamed dreams on her behalf.  When she was 10 years-old she entered into the prodromal phase of childhood-onset schizophrenia.  There went that guarantee.  There went those dreams.  What’s going to happen to her now? Will she ever move away from home? Will she ever be able to hold down a job? Our ASD girl is more likely to go to college and marry than my daughter with the schizophrenia spectrum disorder, but this is life, isn’t it? I could get cancer.  My husband could die in a car accident.  How do you suppose the relatives and friends who lost children and family at Sandy Hook Elementary School feel about the bigger ontological questions of life or the families who have lost loved ones in Iraq and Afghanistan? I’m not being flippant.  Far from it.  One day your life is normal and good.  The next moment, it’s a nightmare.  This is reality, and there is no getting away from it.  Whenever we get pregnant, there is no guarantee that our babies will be healthy even if they are born healthy.  They might not stay healthy.  We are not privy to future events.  We only have today.  This moment.

If loneliness, suffering, and alienation are par for the course in our life experiences, then why can’t something better also be part of our lives? What might we do with the present moment that might affect the future for the better? At the end of the day, stay-at-home and working mothers alike love their children.  We both have that in common.  You know what else we have in common? We’re women! Why choose relational aggression, competition, and jealousy when we could choose support, kindness, and acceptance?  What does that cost? Nothing.  Furthermore, why do special needs parents and parents of neurotypical children walk a divided line? Yes, I know quite well what life is like inside the pressure cooker of raising special needs children, but I also have a neurotypical daughter free of any DSM-IV diagnoses and another daughter with bipolar tendencies.  Raising children is hard! All parents have certain things in common.  We all lie awake at night wondering if we said anything that day that broke our children for good.  We wonder if we’re becoming our mothers (or fathers).  We wonder what kind of friends our kids have and if they’re good enough.  We wonder if we’ve talked about sex enough.  Do they really know how powerful it is? Do they understand the longterm consequences of becoming sexually active? Do they understand birth control? We wonder if we’ve instilled enough self-esteem into our kids so that they’ll make good choices in future relationships.  If we have girls we wonder how they feel about their bodies.  If I had boys, I would probably wonder the same thing.  Then, I would wonder how they felt about girls’ bodies and if they sincerely respected them.  We wonder about a lot of things as parents, and it doesn’t matter a bit if your child has special needs or not.  Your worries might be different, but we all worry.  In this, all parents can give a sincere, warm hug to any other parent out there and say, “I’ve got your back.  You would give anything to take away the suffering of your child.  I would do the same.”

Yes, there are certain things that some parents will never have to endure simply because they have healthy children, but to judge another parent because they don’t have a special needs child is wrong.  To assume that another person can’t or won’t empathize with you simply because they haven’t been a part of the shared experience is inappropriate and narrow.  I’ve never had to watch my child undergo chemotherapy, but I’ve had to leave my 11 year-old daughter at the psych ward of a hospital a few times.  I had to listen to her call for me while she choked on her tears as a nurse dragged her away.  Pain is pain.  Disappointment is disappointment.  Suffering is suffering.  Every human being on the planet has shared in the common experience of suffering.  We are all linked in that way.  We are all bonded.

I think it’s time that we lay aside some of our grief, anger, and disappointment and look at the people around us.  I don’t care if they are conservative or liberal, gay or straight, homeschooling or sending their kids away on the bus every morning, or talking about how awesome their Mandarin-speaking, ballet dancing toddler is.  We are living in a world that is far more interested in creating division than unity, and it’s up to us to look beyond superficial presentations and sensationalized media reporting in order to see what’s underneath.  It’s no easy task to build meaningful relationships or even reach out and make new connections, but what are our options? Do we want to be a part of building supportive communities where everyone is welcome, or do we want to perpetuate relational isolationism and insular thinking with phrases like, “You couldn’t possibly know how I feel,” and “Your life is easier because of ______.”  It’s just as easy to say, “Do you need help?” or “Would you like to have a cup of tea with me?” or “You look awesome today!” or “I see that you’ve got your hands full.  I’m running to the grocery store.  Can I pick up some essentials for you while I’m there?”

Do you know what the hard part is? Accepting the help.  Accepting the compliment.  Admitting weakness.  Being vulnerable.

All it takes is one person reaching out and another person accepting the invitation.  That’s all.  Authentic community always grows.  So, I challenge myself and in so doing I challenge you to lay down any preconceived notions that you have about others in your sphere of influence and make a new connection with someone.  Practice being the kind of person in your community that you dream your community could be for you and your children.  If we all practiced this, think about what our little patch of influence might look like in 2015.

“Love is what we are born with. Fear is what we learn. The spiritual journey is the unlearning of fear and prejudices and the acceptance of love back in our hearts. Love is the essential reality and our purpose on earth. To be consciously aware of it, to experience love in ourselves and others, is the meaning of life. Meaning does not lie in things. Meaning lies in us.”   Marianne Williamson