Tuesday, August 23, 2016

Autism Parents: Navigating a Sea of Perpetual Bullshit

There are some places that I expect to have to muddle through outrageous claims and advice about autism.  Facebook is one of those places.  Autism parents are constantly bombarded with advice on how to best help or even "cure" their autistic children.  These opinions are sometimes confined to autism parent support groups in which each parent is giving and getting advice on the best way forward.  Other times articles are posted on our walls by well meaning friends who don't know much about autism, but think that something that helped a friend of a friend or a kid on a talk show might help our kid too.

For parents new to a diagnosis and the world of autism, the amount of advice, recommendations and even condemnations are dizzying.  As we stumble through, some of it we will internalize and work to make useful for our lives and our own children.  Some of it we will blow off as a total quack method or nonsensical voodoo that was most likely thought up by someone trying to make a quick buck.  Some of it we admit could work for others, but we know it's not the best way forward for our child.

Bottom line: we figure it out.  We go through our internet interactions wearing our autism armor, only taking advice from sources we trust and people we have vetted.

Sometimes people with the best intentions get sucked in to pseudoscience and false promises out of sheer desperation.  Because this is a known pitfall, most of us are appreciative of the advice we get from our autism internet support networks, but we leave the big decisions between us (the parents) and our child's doctors, specialists and therapists.

Seems like a legitimate approach, but imagine our surprise when some of the "professionals" with whom we consult turn out to be just as disillusioned as all of those confused internet gurus.  It happens.

A friend of mine with a son on the spectrum who has gone back and forth for a year at a certain medical facility trying to find the right specialist, get an appointment with the specialist, find a way forward for her son with the guidance of a specialist thought her luck was finally changing when she finally got him in to a child psychiatrist.  Up until that time her severely autistic son had seen a pediatric neurologist, ABA therapists, general practitioners, OTs, STs, PTs, etc.  Even with all of that she had been told his regression was again in full swing and therapy would only do so much.  Her concern at this point was treating the mental health comorbidities to help him have more successful days.

Hopeful that this new set of eyes would be helpful in managing medication and recommending a way forward, they went to the appointment.  Much to my friend's shock and dismay, the doc pulled out a book written by Jenny McCarthy and a doctor who should probably have his medical license revoked.  To anyone who doesn't know, McCarthy claimed her child was autistic, started a foundation, headed the anti-vax movement in the states, and later said her child never had autism.  Her foundation advocates healing autism through homeopathic methods and does not recognize autism as a genuine neurological difference.  The doc my friend saw told her to monitor what her child ate and look into chelation therapy (a therapy used to the remove toxins that is not FDA approved and would not be recommended by any doctor in their right mind).  After rolling her jaw up off the floor, my friend left the office, had a good cry that another doctor was no help and moved on.

I think the terrifying part is that this is not an isolated incident.  As healthcare coordinators for our children with autism we are constantly wading through bullshit from professionals and support systems alike and we're tired.  From the general practice doc who won't recognize our child is autistic because they can make eye contact to the psychologist who says regressive autism is a figment of parents' imaginations.  From one psychiatrist who says a medication must be weaned off to another who says the same medication can be used on and off as needed.  From one ABA therapist who says extinction method is the only way to truly stop a bad behavior to another who claims extinction is dangerous and should rarely be used at all.

We get advice from strangers on the foods our kids should or shouldn't be eating.  I've actually had someone tell me red dye was to blame for my child's autism in the middle of a meltdown.  We face the overzealous essential oil consultant who claims by not using oil on our children's throats we are damning them to a life of silence.  We have been told over and over a certain center, a certain regimen, a certain diet, a certain whatever will "recover" our child.  And while we are inundated with advice, most of which we did not even ask for, no one seems to consider that we have done our own research.  We have tried elimination diets.  We have hoped certain therapies would make life easier.  We have already heard about the newest thing you're sending us.  We are consumed by this need to help our child and thus are already in the know of any new treatments, new information or new recommendations that come out.  Another minor detail no one seems to consider: tossing around rhetoric regarding cure and recovery is not only misleading, it's insulting.  Advocating recovery is telling an entire population of autistic people they are currently lost and need recovering.

At the end of the day, we look at our kid and know that we know them better than anyone else.  We make all decisions out of respect and love for them and hope that our regrets will be few.  The best way for us to help our kids is to know them inside and out and take all guidance with a grain of salt, no matter the source. But, my God, we are tired and making all of those decisions would be so much easier if we didn't have to navigate through the constant bullshit thrown at us as we try to do what's right and what works for our kid.  

Thursday, August 11, 2016

Rant of a "Non-Working" Special Needs Mom

As I sat down to write this post about why I do not work outside of the home every sentence came off as an apology or a justification.  So I am starting over and I am going to try to make it clear that this is an explanation and an attempt at opening minds to realize that not every stay-at-home mom wants to be a stay-at-home mom.  And that's okay.  This is not a post to pit working moms against stay-at-home moms.  This is my experience.  I am not preaching that one is better or worse or that one is harder or easier.  I also recognize there are a number of stay-at-home dads, this is not written from or including that perspective because that is not my experience.

Now that the PC disclaimer is out of the way, I want to tell you why I am a stay-at-home mom and how much I hate it (pretty sure we aren't allowed to say that).  A few months ago as I was meeting with our son's autism program school liaison I was explaining to her what our typical weekday entails.

It went something like this:

Mondays: In home ABA 8-12, with school drop off for my oldest child at 9, then school drop off for my middle child at 12:30, then pick up for my oldest at 3:30 and pick up for my middle at 3:50, then in home ABA from 4-6.

Tuesday: Repeat Monday

Wednesday: Repeat Monday but add in a 1:00 counseling appointment for our oldest child who is working through a number of special needs sibling and military kid issues.

Thursday: Drop off oldest at school at 8:50, Clinic Occupational Therapy and Speech Therapy at 9:00 and 9:30, In home ABA from 10:15-12:15, school drop off for middle and then school pick ups.

Friday: In home ABA from 7:45-9:45 (drop off oldest in between), OT and ST from 10-11:30, school drop off for middle at 12:30, then school pick ups, then swim class at 5:30.

So there you have our typical week, not including extra curricular for our oldest.  Of course, you have to consider monthly appointments that are added in throughout and god forbid someone gets sick, because then that's another appointment to work in.  And don't forget all of the parent/therapist meetings and parent/teacher meetings and IEP meetings thrown in throughout the month.  Oh, and all of this is done with a 2 year old in tow and typically on about 4-6 hours of sleep.

After going through all of that the response from this female liaison was, "Wow, so you don't work do you?"

Ha!  Now I get it, she meant to say if you are doing all of that you must not have time or the capability to work outside the home, but that isn't what she said.

This rubbed me the wrong way for a few reasons and a recent encounter in which I was asked about my plans for work after my kids are in school has exposed the wound all over again.

First of all, I think we as women have become so hellbent on equal opportunities in the workplace and proving we are just as capable as men, we are quick to judge the women who are focusing all of their energy on running their household and raising their family (for whatever reason) as if they are somehow less than for not trying to have it all.

Secondly, this question ate at me because I want to work.  I have always wanted to work.  There are some women who have never wanted to do anything other than raising their family, which is commendable.  That isn't me.  Growing up I wanted to be an astronaut or a veterinarian.  When asked what I wanted to be I never said a wife or mom.  I don't think many girls did.  We had dreams aside from that.  After growing up I planned to be a professor or an attorney.  After having three kids, I didn't give up on that.  I continued working towards and earned my Master's, but I don't know that it will ever matter.  You see, as a military wife, supporting my family and my husband's career has meant moving every 1-2 years, which makes holding down a professional career of my own nearly impossible, even without the kids.  As it turns out employers aren't quick to hire women whose resum├ęs show a work history with giant gaps or employment in 3 states in 6 years.  Before I had my children I worked 40-50 hours a week outside of the home and the plan was always to go back to that once my kids were in school and once the moves slowed down.

But as that day gets closer, I know it will not happen.  Our son with autism needs the stability of me home.  Managing his care, his therapies, his medications and playing mediator between professionals, making calls to insurance, keeping up with his IEP and school goals has become a full time job.  And that doesn't even take into account the amount of time and energy spent focusing on his needs, his behaviors, his skill deficits... the list goes on and on.  Even after he is in full day school, he will still have weekly outpatient appointments.  I could entrust all of that to a nanny (that I would probably have to pay more than I would make to take on our chaos), but would she know how to keep all three kids safe in a parking lot?  Would she know how to react if he starts self-injuring on the concrete (when you have to hold the two year old with one arm and keep your hand between his head and the pavement with the other)?  Would a nanny know how to get him in the door to school everyday (a ritual that has become a carefully orchestrated dance with a balance of incentive, consequence and calming techniques)?  Would the regression and inevitably increased anxiety be worth it so I can feel like I am doing something more with my life than "just being a mom"?  Probably not.

I know what being a mom to typical children entails, I was that before I was a special needs mom.  And even then, I found staying home with an infant harder and less fulfilling than working outside of the home.  That's just me.  But being a special needs mom is a different ball game.  And, no, it's not a contest, but I think if I had a camera on me day in and day out, the show would be enlightening to the world outside of our autism and special needs communities.

As a special needs mom I have fought more battles and solved more problems before breakfast than most in office jobs have to handle in a week (and I know, because I did that too).  As a special needs mom I get less sleep than most would think is humanly possible, and then face day after demanding day.  As a military spouse I don't have help from family or someone to call when I'm burnt out.  As a special needs mom, I clean up more disgusting messes than a hospital janitor on a daily basis.  As a special needs mom, this is not just a phase or the terrible twos or threes that we have to power through; this is life.  As a military spouse I face single parent ops and absent daddy for deployments and TDYs.  As a special needs mom I deal with the fall out of that separation tenfold.  As a military spouse I face the work and strain of move after move.  As a special needs mom with each move I have to secure new services, ensure appropriate education, sign off on a new IEP, handle regression and prepare a child with severe anxiety for a new life in new surroundings.  Over and over.

As a special needs mom, I balance the needs of two other children who often feel neglected and left out.  And some days I do a miserable job with that.  As a stay-at-home mom, there isn't a raise or a pat on the back for solving a problem or getting something done well.  As a special needs stay-at-home mom, there's no way to gauge how you're doing at getting the job done and most days you feel like a big fucking failure.  As a special needs mom, there is a constant gnawing at your brain about the future and if you are doing what you need to do to have everything in place so that your child will be able to live as independently as possible, or having a plan in place if that is not possible.  As a special needs mom, or any mom for that matter, you don't clock out in the evening or even for sleep.  As a stay-at-home mom you have to write unemployed or "non-working spouse" while filling out paperwork, and I glare at those boxes every time I check them off.  As a special needs mom you don't have the same freedom to vent about parenthood because doing so means you hate your child's disability.

As a stay-at-home mom you don't get to escape domestic life and go feel like you are a part of something bigger beyond your little family.  Don't get me wrong, my family is the most important thing in this world to me, but family is the most important thing in the world to my husband too and, yet, he still gets to have an identity outside of that family.  I do not and maybe never will.  After being out of the work force for so long, even if my husband and I decided to switch roles so I could pursue a career, starting over at this point would have my earning potential at next to nothing and therefore it isn't a feasible or sensible option.

So, no, I do not work outside the home, but I assure you, special needs stay-at-home moms are the hardest working "non-working" moms you will ever meet.


I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...