Turtling and Pooping

We saw a new pediatrician yesterday.  While my son started the visit hiding under the waiting room furniture, we all left feeling more hopeful and validated than we have in months.  You see, until you have a child with autism, you really can't understand how grossly uneducated the majority of society is concerning the struggles and issues autism throws at you. 

Now, I promise this will not strictly be a "poop talk."  But, it will start that way...

You see, we have been concerned with our son's chronic and severe constipation for years. Countless times, we've brought it up with multiple doctors, only to be told it was a) likely a behavioral issue, b) he needed to increase his fiber, c) we should put him on a stricter bathroom schedule, d) it was perfectly normal for kids his age, and e) all of the above.

We've presented in the emergency room multiple times because of a small boy who was doubled over and screaming in pain because his abdomen hurt so badly. 

Last fall, when I made an appointment with the family doctor we used at the time, I demanded he be examined because we were almost positive our son had the beginnings of a partial rectal prolapse.  Again, we were told after a brief exam that our son was "fine" and we should get him a fiber supplement and put him on a better bathroom schedule. 

Fast forward a few months.  I find my son in pain in the bathroom and see a huge prolapse that warrants an immediate trip to the emergency room.  We choose a different ER.  An ER that we drive an hour and a half to access.  And finally.  FINALLY.  Armed with a detailed narrative and graphic cell phone photos, we see a physician's assistant that takes us seriously.  Two days later, we present at a new pediatrician's office (the same hour and a half drive away) and spend nearly two hours discussing my son, his physical issues, and discoursing on and ruling out possible causes for his GI issues.

Why was this visit so different from all those times at the family doctor and the ER when they told us our son was fine, just acting out because of anxiety or not wanting to go because he was "too busy?"

Because this lovely physician has a son with autism.  Like ours. 

We are on the right track now to finding out the cause for our son's GI issues.  Amazing things happened that no one has ever bothered to do for him, like blood work and actually reading his prior evaluation records. 

We are hopeful, maybe even confident, that we will find a cause to our son's discomfort, his pain, his miserable struggle that has been "going potty" for far too long.

So, this post is kind of about poop.  But it's mostly about awareness.  And education.  And being a relentless advocate. 

Because parents shouldn't have to figuratively (or literally) stand on chairs and scream to be heard.  My husband and I are the parents of a highly intelligent and highly verbal child.  Who has autism.

He can speak.  In fact, he speaks incessantly.  About Star Wars.  About Pokemon.  About planets.  About his beloved dogs.

The number of times a day, no, a week, he communicates something relevant about his feelings or his health or his needs?  So rarely that the household screeches to a stop to listen when it happens. 
More often? Never.  Zilch.  Nada.

Because speech does not equal communication.

And just because my son has autism.  Just because we live in a rural area.  Just because I have to be my hyper-verbal nearly 8 year old son's voice most times.  Does NOT invalidate his health.  His well-being.  His quality of life.

As a parent, I have been in "turtle mode" for months.  I have struggled with knowing something is not right, but feeling beaten down and guilt-ridden because over and over again we've been told our son is "fine." 

Listening to a doctor with a plan to help my son feel better, to discover the root cause for his digestive issues, and even do further testing for other concerns I've brought up over and over, only to be rebuffed by countless other 'professionals'......

Well, I was kind of like a turtle who has been moved out of a traffic-filled highway, only to find himself safe in a cushion of green grass close to a shady tree and a clear, cool stream to drink from.  

I can finally poke my head out of my shell a little.  Test the air.  Smell the grass.  Maybe even take a few steps toward the stream. 

My turtle shell had morphed from safe place to prison, and I'll stand for it no more. I want the grass, the fresh air, the cool water.  I refuse to hide in a shell prison, forced there by the ignorance of others.

My son, "turtling" for real.

I don't have an answer that will fix the problem of the (in our experience), vastly under-educated medical community concerning autism and the potential of related physical and mental health issues. 

But I can urge you, as parents, that though your autism dance may be one step forward and one step back; NEVER stop dancing.

Never stop advocating.  Never stop screaming from the rooftops and demanding to be heard.  And if you're in full turtle mode like I have been, don't put up with those that make you feel forced to stay inside where it's safer.  Find the ones who are willing to risk the traffic to get you out of the highway.

And hold onto them.

What I Want Others to Know About My "Medicated" Child

I would love to tell you about my son.  There is so much I want others to know about him.  His kind heart, his wild creativity, his love of science, and his compassion for animals down to the tiniest insect and earthworm. To know him, is to love him. He's an incredible kid.

My son also has autism. And sensory processing disorder.  And obsessive-compulsive disorder.  And a tic disorder.  And anxiety.

Any one of those things would be enough to interfere with his daily life, his functioning ability, his well-being.  All of them combine to make him an anxious, sleepless, aggressive, violent, depressed, anti-social wreck who struggles with self-esteem while grappling with obsessive thoughts and compulsive behaviors while living in a world not made for him. Whose societal rules he struggles to understand and whose sensory input assaults him from the time he wakes up til the time he goes to sleep. 

Part of the reason my son has obsessive thoughts, compulsive behaviors, extreme anxiety, insomnia, depression, agression, and panic attacks is because he has a chemical inbalance of serotonin.
Serotonin is a chemical found in the human body. It is a neurotransmitter, which means it carries signals from and within the brain, as well as other parts of the body. It is believed by researchers to contribute to well-being and happiness.  And my boy's body doesn't produce enough on its own to effectively contribute to either.  So he now takes a medication to help his body produce serotonin in a way it can't on its own.

I've wanted to write about mental health and medication for children for a long time.  After many false starts and posts written in my head, I came up with a list of four things I want you to know about my son, who happens to take medication for his mental health and well-being.

1.  My son is not a "zombie."
I've seen and heard so many people talk recently about today's children being "over-medicated" and that we are the "Prozac nation."  Educated and seemingly rational people calling other parents out on social media for "medicating" children to avoid being a real parent. To them, I say this. My son's medicine does not make him a zombie.  We are not doping him up on something because we can't control his behavior. After exhausting all available options to help him with the struggles his diagnoses present, we (his parents) along with a psychiatrist with many years experience in childhood mental disorders, made the decision to try a medication that treated the symptoms of his diagnoses.  And thus far, it is working beautifully.  No, we are not throwing him a handful of narcotics each morning to keep him "out of it" so as not to deal with him.  He is bright and articulate. Most days, he is a joy to be around. He is helpful, empathetic, and pleasant. Even more so now that his brain isn't constantly on red alert - fighting the compulsion to put things in order and organize his surroundings to get rid of the nagging, anxious thoughts that run like white noise in his head all day.  He is able and willing to engage in the world, rather than hide from it.


2.  Medication is not a silver bullet.
My son feels better when he takes his medicine.  He is more regulated, less anxious.  He can engage and his brain is quiet enough to better focus on things around him, rather than become stuck on what ifs and did you knows.  His emotional outbursts and violent episodes have decreased tenfold after starting medication.  But, there is no silver bullet.  Those episodes have decreased, not disappeared.  He participates in several hours a week of different type of therapies and classes to work on various skills and issues.  I still have to watch him like a hawk in case he becomes overwhelmed and bolts.  I monitor his peer interactions from a distance because he doesn't yet understand the difference in children being playful or bullying him.  He's vulnerable and emotionally immature.  Medication will not fix that.  He will have to slowly learn and grow and one day, maybe, he will understand those social nuances. The pill he takes is not intended to fix him, but to allow him to work on being his best self.  Which leads me to my next point.


3.  Medication is not "fixing" him.
He is a seven year old boy.  A human boy.  Not a piece of furniture.  He is not broken, and therefore, does not need fixing.  Even if he did, his medication is not made to "fix" broken people.  Much like insulin does not "fix" diabetes. A diabetic does not take an insulin shot to cure himself of diabetes, but to control the symptoms the disease causes.  An SSRI (like my son takes) does not "fix" someone with anxiety or depression.  It helps to control the symptoms caused by them by increasing a brain chemical his/her body is not adequately producing alone.  Medication is not a glue holding my son together, nor it is a crutch holding him upright.  It relieves some of the anxiety, the panic, the overwhelming nature of autism and so many other co-morbidities.  Medication provides enough quiet space and calm thinking in his brain to give him a chance to utilize the coping and social skills he learns daily.  It gives his overworked brain some breathing room to remember sensory strategies and calming techniques when he finds himself in sensory overload.  Medication is not fixing his diagnoses, but helping him navigate them successfully.


4. A child on medication does not equal lazy parents.
Knowing our son has a better handle on his anxiety and compulsive behavior does not mean we have been able to get lax in our parenting.  Far, far from it. If anything, we are more vigilant.  More observant of behavior patterns and triggers, of sensory problems and social miscues.  We are better able to determine whether an emotional outburst was due to an anxiety issue or if it was simply a cry for attention.  We still hold him accountable for his behavior and choices.  Just as his diagnoses have never been an excuse, neither is the fact he takes medication for them.  I would love to tell you that medication has made our lives a cake walk.  That I no longer have to intervene when he and his sister argue in concern for her safety.  I'd love to tell you he goes straight to bed without coming down to get us at 11pm to ask one more time if we have to leave the house tomorrow.  It hasn't. We still have to remind him to follow the visual schedule.  We still have to monitor his bowel movements. We keep track of his anxiety and what set it in motion.  We employ sensory and behavioral methods to keep our house running as smoothly as an autism house can. We are still exhausted and ragged at the end of the day because medication does not allow us to ease up and relax. Medication does not provide any of us an escape from autism or SPD or OCD or anxiety or vocal tics or perseverations. In addition to not relaxing, we now also monitor him for side effects, adverse effects, and whether a cold medicine might interact with his current medication and put him in danger.  We are still annoyingly involved in his therapy, his progress.  We are still constantly aware of his state of mind and well-being.  We still keep track of what he eats and watches on TV.  We still do everything we can as his parents to ensure he is happy, content, kind, compassionate, and successful in his daily life. And then some.


Medication for mental illness is not a thing to be demonized or vilified.  Nor should it be worshiped and hailed as a cure-all.  It is a tool.  Just another thing in my boy's arsenal of coping mechanisms and techniques to ensure he reaches his full potential and can not only function successfully, but happily.  Maybe you knew these things about mental health medications.  Maybe you didn't know any of them.  And maybe.. just maybe... this post will make someone stop and think before they pass judgment on a parent who has a "medicated child"- like mine. Before they pass judgment on the child who will eventually become a "medicated adult." It is not a weakness or a crutch and it is high time we end the stigma.

Real Talk

I started blogging about special needs for me.  For my family.  For parents like myself and my husband.  Parents who have spent agonizing months waiting for evaluations. Parents who have celebrated milestones alone because every one of their child's peers all passed it long ago.  Parents who have cried in a public place after hearing their child's first four-word sentence spoken spontaneously.  Parents who don't want to care that their child has no friends, but whose hearts still sink a little as they watch him avoid peer interaction. 

I choose to share mostly positive things.  There are those who have criticized some blogs, passing judgment on them for being "too happy" or "not showing enough of the negative side" of autism.  Autism is not always happy.  Not having autism is not always happy. No one has the best day of their life every day. 

However, in our autism journey, the highs seems to be higher.  The lows seem to be lower.  We have hard days in every week.  We have hard moments in every day.  We are not lacking in challenges and difficulties.  They are so plentiful, in fact, that if I focused too much on what my children can't do or how difficult our 'everyday' reality is compared to what it could be, I would drown in the collective weight of it. 

So I make a daily choice. To not focus on the meltdowns. The hours spent on the phone with insurance and doctors trying to secure services and push for referrals. The hours spent talking with the school to ensure they know my child's needs. The multiple times a day I've had to help a child with a self-care task they "should have" mastered years ago. The times that I've gotten in the car after a playdate and cried on the way home because, yet again, we couldn't handle it. The nights I've not slept, not because a child kept me awake, but because I was overcome with fear and anxiety and guilt and wrestling with the ugly possibility that for our foreseeable future, all of these negative things are simply on repeat... 

I focus instead on what my children CAN do.  I put out to the public the good times, the progress, the first times, the funny times.  I choose not to wallow in the hard days.  I choose to celebrate and build upon my children's capabilities, rather than their deficits.  Sometimes, I share a hard day, a meltdown, an obstacle we're facing.  But I do not post about every single one.  (I'd have a pretty depressing blog and page if I did.)  And though the autism community seems to be getting a lot of flack for this positive focus; when was the last time you read a blog post or social media story by a parent on how their 'typical' child was given detention, grounded for poor choices, or received a failing grade?  How would you feel about a blog if a parent incessantly talked about their child's flaws rather than their virtues? 

It's not an attempt at creating a 'false face' of special needs.  It's a conscious decision to share things that build up rather than tear down, that encourage rather than discourage, that can be cheered on and not wept over.  I'm not trying to gloss over our hard days, I'm just trying to not live there. 

I want to show that we can survive, even thrive, despite days that drag us down. I want to show that you can be beaten, and get back up and overcome. I want to show that a diagnosis is not the end of your world. It is not the end of good times and positivity. 

I want to put something out there that shows parents they're not alone.  We've been there too.  It gets better.  We're there right now.  It is hard, but it is also beautiful.  We'll be there in ten years.  It gives us hope and light for what is to come.

It's real talk. It's not an attempt to degrade or belittle our children by sharing details of our life.  It's not an attempt to degrade or belittle your journey because we focus on the bright side of ours.  It's about focusing on something good in my world and hopefully bringing good to the world of others.
If you don't agree, you have every right. But there's no need to judge, accuse, and attack. None of us have time for that.

An Open Love Letter to our Library

Dear Library Staff,

We came to our first preschool story hour two years ago. 

We had to leave because my daughter had a meltdown and tore apart some shelves.  You may not remember that, but I do.  It took all my courage and strength to try it again when school had started and the summer crowd thinned out. But we did it.  And it was a little better.  Slowly but surely, she came out of her shell.  She started to sing along, to do crafts independently.  Then one day, she ran to you and took your hand.  She hugged you and claimed you as hers.  You ceased to be strangers and became one of us.  A safe place, full of friends.

My son loved you immediately.  He talked of nothing but library days and started checking out books by the dozens. I was shocked when he spoke to you, befriended all the staff, charmed you with his facts and brutally honest commentary on life.  He even found a few friends his age there, though he preferred you.  If I lost sight of him, I found him with one of you.  At the checkout counter chatting about our family dog, at the craft table in deep discussion about his plans for retirement, learning to use the Minecraft server, or behind the director's desk laughing at a poop joke. You're his kind of people. A safe place, full of friends.

That doesn't sound like too much.  But these are huge milestones for my children.  Milestones I wasn't sure they would ever see realized.  Progress I was scared they'd never make. 

 

Because two years ago, my daughter was essentially nonverbal.  She could repeat only ten words at two and a half years old.  Her severe sensory issues prevented her from typical daily functioning.  She screamed all day, she wouldn't eat anything but yogurt, she'd never picked up a toy, let alone a book.  At that time, I felt like I'd failed her.  We were in speech and occupational therapy four days a week and awaiting a full developmental evaluation at an esteemed pediatric clinic.  I was terrified and drowning. Fast forward two years, and the gravity of her sitting happily, doing a look and find book, while chattering away about her favorite color and princess may be lost on some, on you even.  But never on me.  Never will I watch her light up and high-five you without marveling and silently sending up a grateful prayer into the universe. 

 

My son flaps with excitement on the way into story hour.  It's cute and sometimes silly.  And it's progress.  That blur that just flew past the checkout desk on his way to the graphic novel section has such severe social anxiety, we've had to give up every other activity we've tried.  You are his only place. Two years ago, he sat through the stories and songs with his hood up.  I don't know if you noticed, but he never pulls his hood up anymore.  Sometimes a baseball cap or sunglasses, but even those are slowly being phased out. I will always be grateful he's expanding his mind through books, but I'm even more so that you're expanding his comfort zone. If it wasn't for you, I'd never get him to a Lego Club, a science day filled with noise, a story hour filled with touchy-feely toddlers.  He doesn't always do the crafts.  His motor skills are delayed and it embarrasses him that he needs my help.  He has vocal and facial tics. Did you notice? If so, you never make him self-conscious or call attention to them. He walks in your door with a swagger in his step (or just running full speed) because you have made it known he's welcome there. That full speed swagger makes my heart sing.

You welcome my children. You respect their differences and encourage their individuality.  You show them what acceptance means. You remind me what it looks like, when I've all but forgotten.

The ones in the front, lying on the rug?  Those are mine.

 You're our place. I consider you part of our tribe; your building, our wigwam. Your acceptance is our peace pipe. And there's no one we'd rather pow-wow with than you. It's a very groovy thing.

With all my love and gratitude,

Seeker and The Prof's over-caffeinated Mom

Us Vs. Them

I'm going to be blunt.  To keep this short and sweet.
My son with autism is not in competition with yours.  Nor is he competing with his neurotypical peers.  Nor is he competing with others on the autism spectrum.  He is doing the best he can to live and thrive with a neurological disorder that makes life confusing and difficult at times.  It is part of who he is.  It's the only life he knows and he doesn't care if he's "as autistic" as someone else, or "more compulsive" than another child.  The only competition he's concerned with right now is winning a computer at our library's summer reading program.

I am not in competition with you or any other parent I know.  I don't envy you your 'typical' child.  I don't feel we've won one for Team Autism when my son knows a science fact yours doesn't.  I don't feel we've forfeited to The Neurotypicals when my son has to leave a store due to sensory overload.  It makes me happy when you accept and include my son.  It makes me disappointed when you avoid him (and me) because you're not sure what to say.  I try to surround myself with people who support me without passing judgment or trying to compete.  Because that's the kind of friend I want, that's the kind of friend I strive to be.

We're human.  We make mistakes.  We do and say things we didn't mean or maybe they just came out wrong.  We dwell.  We want to win.  I get it.

But hear this:
Autism is not a competition.  There is no us versus them.  We are all in this together.  Autism can be an incredible thing.  But some days, it can also kick our butts. Our children are gifted, but autism itself is not a gift.  It's the toughest, most rewarding job you'll never get through if you don't have support and love from people who believe in you. 

And the clincher? 
There is no winner. 

Sorry guys, but there aren't blue ribbons and gold trophies waiting.  Because it was never a competition.  There is no Us vs. Them.  ASD vs. NT.  Organic vs. Monsanto.  ABA vs. Floor-Time.  PECS vs. AAC.  None of it really matters.  What matters is support.  What matters is listening.  What matters is bravery and advocacy.  What matters is doing what is best for the child you have.  What matters is love.  Loving your child.  Loving yourself.  Loving your community.  Loving all of them enough to say no more competition.  No more negativity, no matter who it's directed toward. 

 

We're all in this together.  No more mockery, bashing, or negativity toward any group of people.  I cringe when I see people ask for "autism acceptance," yet throw dirt at "NTs" or families with "typical" children.  And I ask you please, no more.  Just love from me.  Just love for my spectrum boy.  Just love for yours, boy, girl, spectrum, or not.  Just love for the kids who don't quite know what to say when my son stims.  Just love for the moms who don't know what to say about their kid not knowing what to say.  Just love for the 'typical' kids who made MVP and went to summer camp.  Just love for the moms who are rightfully proud of their accomplishments. Just love for the mom who cries at night because her child might never live alone.  Just love for the one struggling to get hers through the store.  Just love for the moments and the life we have, not the one we see someone else living.  Just love for progress, no matter how small.  Just love.

The A Train

My husband and son both fall on the spectrum.  I often try living their 'autistic experience' by listening to their feelings and perspective.  I ask them lots of annoying questions, since they rarely offer lengthy (or even brief) verbalizations of feelings or thoughts without my badgering prompting. 
So, I ask and I listen.  And I try to imagine.  The hypersensitivity required to feel the vibration of the window air conditioning unit running in an upstairs bedroom by touching a counter in the room one floor below.  How stressful the need to rely on attributes like voice and hair length to recognize friends and family due to almost total face-blindedness. To remove theory of mind and experience the confusion and unpredictability brought on by being perpetually surprised by the actions of others. To become adept at conversing only in song, movie, or book quotes; at using someone else's words to express feelings or communicate needs and wants.  The calm stimming provides, creating mental 'white noise' to prevent over-stimulation. The need to tic that like the urge to sneeze, can't be stifled.  The literal language barrier. The need for sameness, for order.  How upsetting someone's summer haircut or furniture rearrangement can be to a person who catalogs a friend's identity according to long hair or whose mental map of  home is based on the current couch placement. And when those things change, imagining an entire mental file that has to be deleted and rewritten according to the new standard.  When your entire world, thought process, and actions are built upon these rules and orderly files, having to rewrite too many at once or having them unexpectedly deleted, causes mental havoc, and can even temporarily crash the entire system.

I'm fascinated and awed by my spectrummy boys' life experiences. It's the same life I'm living, yet not really alike at all.  It's as if we're on two separate trains heading the same direction.  Their rail line runs parallel to mine. While we pass the same country, same scenery, eat popcorn in the dining car, our tracks may even cross one another, and we will eventually arrive at the same destination (preferably Hogwarts), my beloved boys are riding on a narrow gauge steam engine, while I'm stuck on a diesel (make Thomas the Tank Engine jokes about diesels here).  Our destination and method of transportation are similar, but our journeys are so vastly different.

You don't know autism unless you're riding the A train, using the ASD operating system to navigate the switches and level crossings. I've known my husband for half of my life.  I learn something about him and his journey each day.  My son constantly enlightens me on what his autistic brain is like (I had no idea he was essentially faceblind until a few days ago!).  My husband, my son; they know autism. It is their method of transport, their operating system. To presume you know it for any other reason; well, that simply fails us all. Without acceptance and respect for their journey, a journey in which they see detail and minutiae that is blurred through my fast-track diesel train window, we do the world a disservice.  To assume their operating system is 'less' because it is different, is like saying a ride on an engine powered with coal is less than a ride on the one the diesel train because it takes longer to travel the same distance.  People are used to diesels.  They see the narrow gauge and struggle to understand, to know it.  They want to take it apart, disassemble it to see how it runs. What makes them it brilliant, so odd, so quirky, endearing, and at times, even dysfunctional.   

This curiosity is not a crime. We can learn, and learn much, from people with autism.  I devour the works of autistics like Temple Grandin, Jacob Barnett, and John Elder Robison; grateful and fascinated by the look inside their mind and way of thinking.  It's like reading a brochure or manual for that other railway, that other engine, from my seat on the diesel train.  And while I believe education about something is the fastest way to bring about a modicum of respect for it, I've also found that knowing autism isn't what matters most.  Before you disassemble the train to see how it works, accept and respect that it does work.  Maybe not in the same way as a diesel, but this does not make it defective.  Respect that the tracks look different and the engine is unique.  Learn all you want.  But before you try to take the train apart, remember this:

Acceptance and love trump knowing any day. If education is how you begin your journey to love and respect, I urge you to get your information from someone who knows autism. So, when the trains stop at the station, cross the tracks and visit the narrow gauge platform. It's the one resplendent with detail and full of intriguing characters. You won't be sorry.  You might even fall in love. 

Be Good to Yourself

In the event of a loss of cabin pressure, please secure your own oxygen mask before assisting others....

Anyone who has flown before has heard instructions of a similar sort.

Just as you would secure your own oxygen mask to avoid passing out before you could save your children, you have to stop and take a deep breath in every day life.  Lately, it seems self-care has become a buzzword.  We all realize its necessity and purpose. But we also need the mindfulness to know what it looks like for our unique situation. To know what it looks like for you, you've got to slow down long enough to know yourself. 

My self-care ten years ago looked vastly different than it does today. My self-care has changed drastically since having a second child four years ago.  What worked and made me happy then, doesn't fit the bill today.  What was once enjoyable (window shopping or maybe a spontaneous trip to a theme park), literally makes me cringe to think about today. I am a greatly variable entity, and chances are...so are you.  So, stop right now and ask yourself.  Who am I?  You might be surprised at what you find.

Image credit: www.jkhnelson.com

Once you know who you are and what is most important to you, explore your self-care options.  HINT:  If you don't enjoy it, it probably doesn't count as self-care.  Other than that, there are few rules in this area.  Your budget, whether and how often you are able to find trusted care for your children, your time constraints, your work schedule... all those things are factors, but ultimately, you choose.  Still balking at the whole self-care phenomena?  Here are a few tips to send you in the right direction.

1.  Self-care does not have to cost money.  We run a family budget so tight, it squeaks.  Frankly, spending cash on myself when I know it's straining our budget elsewhere does NOT relax me.  Other than an occasional Mcdonald's latte or trip to the local discount store for a dollar bottle of nail polish or lipgloss, I tend to steer clear from self-care that costs.  Some argue that errands are not self-care.  But for an autism mom who has been through a grocery meltdown, I can say with confidence, a grocery trip made alone with a coffee in hand can feel like total liberation.  Whether you choose to leave the house or stay in, being good to yourself doesn't have to strain your budget.   

2.  Self-care can happen at home.  I'm not good at leaving my kids.  The only people who have ever babysat for us are immediate family members, and this only happens two or three times a year.  As much I'd love to go out with my husband or even alone, sometimes it is just not worth the stress, planning, and fallout from an interruption in routine and familiar.  More often than not, daily self-care for me is getting to do my nails without interruption or sitting down to eat my dinner before calling the kids to eat.  That may sound grossly simple, but you'd be surprised how relaxing it can be to sit and eat an entire meal without having to assist someone, cut up food, clean up spills, and run for extra napkins half a dozen times before sitting down to your own (now cold) plate.

3. Self-care is not selfish.  Becoming a parent does not exclude you from anxiety, depression, stress, or frustration. You will get angry with your children, your spouse, yourself.  You will feel overwhelmed and under-assisted.  More than once. You will feel that no one in the entire world understands just how exacting and tireless the demands of your life can be.  This is normal.  In fact, I would raise an eyebrow at anyone who claims to have never felt this way. Self-care is necessary for your mental, physical, and emotional well-being.  It's not selfish to take a soaking hot bath when you've been carrying a colicky infant for 6+ hours a day to lessen their screaming.  It's not selfish to send your wild and sugar-hyped kids outside to play so you can read a chapter of your book in the quiet.

4.  Special needs parents self-care may not look like self-care at all.  Getting groceries alone?  Sitting down to eat dinner?  Painting your nails?  Getting a three dollar coffee?  Yes, I realize these probably don't count as self-care to some people.  I know a few parents with typical children who have their kids go to the grandparents for the weekend, go out for drinks after bedtime, or get massages with their girlfriends.  It's great!  This is self-care! More power to them!  For me (and many of the special needs parents I know) these things aren't always, if ever, possible.  My child's anxiety won't allow them a sleepover with Grandma.  For some, maybe respite care can't come past 9pm.  Maybe they've had to pay co-pays and buy therapy equipment and there's just no money left for a deep-tissue massage (no matter how badly they could use it). Self-care is unique to the individual. Just remember to respect what it might look like for others.

5.  Self-care can mean relationship care.  Now, this one is for all types of relationships.  Spousal, significant other, mother, father, sister, brother, etc.  I talk.  A lot.  My husband does not.  But he understands my need for verbal expression and he listens and talks to me. He encourages me and validates my capability.  It is extremely likely he is on the autism spectrum, and verbal communication is not his favorite. I feel privileged and valued when he takes the time to talk with me.  In turn, I try to communicate his way.  I make an effort to do things that may not be priority for me, but that matter to him. Most importantly, I do them not out of a sense of duty or obligation, but out of respect, caring, and love.  I want to build him up and validate his capability, as he does mine.  We are individuals with many differences, and we make a point to highlight the good in each other. Take advantage of your support system, whatever form it may come in. These people love you. Let them. And return the favor.