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. 

On Functioning

**Disclaimer:  I write from my perspective as a parent of a "high-functioning" child on the autism spectrum. I'm absolutely not here to judge anyone else's perspective, diagnosis, or child.  These are simply thoughts on the term functioning as it pertains to our specific situation.**

Autism a 'spectrum disorder.'  To me, this indicates a many-faceted and layered rainbow of abilities and challenges given to unique individuals. Unfortunately, the diagnostic critera make it look more like a sliding scale. This is where I start to grumble at the term "functioning."

My son has a High-Functioning Autism diagnosis, formerly Asperger's Syndrome. He is incredibly smart, hyper verbal, and gifted in too many ways to list here. 

However. 

He cannot dress, bathe, or use the toilet without prompting, redirection, and most times, assistance.  He forgets to drink anything if it's not brought to him with the amount needed to be drunk marked on the side of his water bottle.  He will ignore or not notice the need to move his bowels to the point, we've landed in the ER twice fearing a hernia or appendix rupture, only to find he was so severely constipated, the pain rendered him immobile.  He's currently unable to go into a noisy restaurant without earplugs or spend more than a couple of minutes in a store with harsh fluorescent lighting without his sunglasses (even with them, stores are touch and go).  He stims uncontrollably when in uncomfortable or exciting situations, his body desperately trying to soothe his dysregulated brain. His social anxiety keeps him from typical childhood occupations like extracurricular activities, clubs, parks, and birthday parties. He tries and tries, but it always proves too much and leaves him feeling defeated because we quit or had to leave early... again... while the other kids he desperately wants to be with continue to run and play, oblivious of his struggle and the effort it took him just to show up.  He wants to spend the night with his grandparents, but can't stay once he gets there because he needs his own bed and routine to calm his anxiety enough to sleep.  He does not communicate feelings, emotions, needs, or wants in developmentally appropriate ways.  He hits, kicks, karate chops, threatens, and screams in order to make his needs and wants known.  At this point, his preschool-aged sister functions more independently than he is able.

I have every reason to hope that with the right supports in place from now until the transition to adulthood is made, our son will be able to live and function independently.  But right now, I'm still prompting and using visual schedules to remind him to put his shoes on the right feet and reading social stories to explain why hitting, screaming, kicking, and spitting at friends and adults (a phase of development NT kids his age left behind about three or four years ago) is not a way to solve problems. 

I know the term low-functioning in reference to the autism spectrum is usually used for persons whose symptoms severely inhibit communication, have a low IQ, and/or whose symptoms interfere severely with their prospective ability to be independent.  According to diagnostic criteria, my son is not low-functioning.  According to his daily life, he's not high-functioning either. He's in survival mode.  He's "getting-by-functioning" a majority of the time (though, of course, we have better and worse days).  We're doing everything we can to change this and encourage and support his slowly progressing independence.  We don't want him to simply function.  We are not raising a robot; we are raising a human being. We want him to be a human being who thrives.  He'll get there.  We know he will, because we will never give up on him. We'll even let him live in the basement (assuming we ever have a basement).  Because that's what parents do. High-functioning or not, neurotypical or autistic, grown-up or child, everyone needs a support system.

My son with Asperger's is not high-functioning today.  One day he will be.  One day, I will stand and look up into the face of a high-functioning, handsome, grown up man with Asperger's Syndrome who can accomplish anything he desires through hard work and effort. He will thrive. And guess what?  He will still need our love and support.  We'll be there to give it.

Magical Cloud Dough

Mondays are very sensory oriented around here. The kids are usually slightly dysregulated from the weekend break in routine and I'm usually more than a little exhausted for the same reason. To ease the transition back into school work, appointments, therapy, errands, etc. I try to provide a sensory activity. Many times, we make play dough or play with water beads. Sometimes, I just turn the kids loose in the trampoline and swings to get all the vestibular and proprioceptive input they can handle.

Hands down, their favorite tactile activity is cloud dough. This is the easiest and cheapest activity you'll find. It's two ingredients and can occupy my kids for hours at a time. I will warn you; it is a mess. I highly recommend doing it outside. We normally spread a tarp or vinyl tablecloth in the yard to play, but you do what works for you.

It's got a great silky texture. It's moldable, but not stiff or sticky. It's non-toxic, even edible if made the right way. You can color it if you like, but it's just as fun if you don't. So, without further adieu, my recipe for Magical Cloud Dough.

Ingredients:

8 cups of all-purpose flour (rice flour can be used to make a gluten free version)

1 cup of vegetable, canola, olive, or coconut oil

Optional:  Add 1-2 TBSP powdered tempera paint to color your dough. To make scented dough, add 1/4 tsp. of your choice of essential oil (we made lemon today and it smells so fresh!). I wouldn't recommend adding scented oil or tempera paint if you have a child that does not understand that even though the dough is edible when made this way - it does not mean it's for eating!

This recipe is easily halved and turns out great if you only want a small batch of dough. With two kids, I've found that the recipe shown gives enough for each of then to have plenty of their own dough without running out.

When you've decided on the amount you want, take your ingredients, put them in a large bowl, mix them together with a spoon or whisk, then use your hands to mix in all the leftover lumps of oil. That's it. Seriously. Voila!  Hours of moldable, magical fun! It lasts for weeks if stored in an air tight container in the fridge. The coldness adds an extra sensory experience. The knot rule is, do not get it wet! It turns to muck. Not nearly as much fun.

If you're up for it, get your kids in on the making process. Let them measure ingredients and do the mixing. You'll have a bigger mess on your hands, but they'll be so proud to have made their own fun! What are you waiting for?  Go make this now!

I adapted this recipe from www.tinkerlab.com. Visit their website or follow them on Facebook for more awesome activities!

What I See Now

 Since my son was officially diagnosed with autism, I have been racked with a sense of guilt.  How did we not see?  How did we not know?  We're his parents. We should have been the first to notice something was different about our boy.  Yet, it took us six years for my husband and I to finally say to each other, "Something's not right."  It took us seven to say to a doctor, "Something's not right."  Gone are the early intervention years for our son.  Gone is that crucial window to address what I see now were obvious speech and auditory processing issues, visual perception problems, fine motor delays, gross motor delays, scripting, echolalia, repetitive behaviors, social and emotional delays, and all the other warning signs that glare at me through home videos of my precious curly-haired toddler with chocolate on his chin babbling about toy trains in a language only we could understand.

There have been so many 'what-ifs' and so many 'buts' banging around in my head the last few weeks I've literally been overcome by that hot, sick feeling of guilt. And each night I've closed my eyes, my own script starts to play.

"I'm your mother.  I should have known.  I should have seen.

I should have seen before you were one and could recite every animal sound we asked of you in addition to a handful of their names, but rarely answered to your own being called.

I should have seen when we read the same bedtime story every night for so many years, your daddy can still recite it today.

I should have known at age two when we could NOT leave the store without buying ANOTHER plastic 'horsey.' When you spent hours organizing them and making me read from horse fact cards your great-aunt bought as a gift.

I should have seen when you begged to watch the same Thomas the Tank Engine DVD for weeks and months on end.

I should have known that a three-year-old speaking in a language comprised of only vowels was odd.

I should have seen and taken notice of you rocking your body as you blew out the candle at your third birthday to cope with the noise while we sang.

I should have known the day you bolted in the grocery store and for five heart-stopping minutes, you were gone.

I should have known at four, when your Thomas fascination was still going strong, that you were scripting the lines from the movies while you talked about yourself in the third person, inserting your name into the movie lines as if you were a character too.

I should have seen when Thomas gave way slightly to dinosaurs and we played "classification" on the living room rug and you became so angry when I forgot which category paralophosaurus fell under that you scattered the neat lines of them and refused to play anymore that day.

I should have known when you were five and knew all the days of the week, months of the year, and taught yourself how to tell time so you could keep track of every minute of his day and know exactly what time your daddy would get off work and be home each night.

I should have looked twice at you constantly standing on your head and folding yourself into a ball, hiding under chairs and tables, long after other kids had outgrown that kind of thing.

I should have seen at age six when we finally found a playgroup, but you spent all of your time sitting with the adults chatting or trailing behind the other kids, content to watch their games instead of asking to join."

These are the thoughts I've gagged and choked on for months. They have kept me up at night, gnawing at my mind and pulling at my heart.  That small voice inside whispers, "You should have known. You should've seen." And I fall apart every time.

My beautiful boy. I wish I had known. I wish I had seen.  But, let me tell you what I was looking at instead.

I was looking at your smile. How it shows your dimples and the way your eyes crinkle like your daddy's.

I was looking at your gentle way with animals, bugs, birds, and even spiders.

I was admiring your intelligence. In awe of all you were learning.

I was watching your logical mind put pieces of the world's puzzle together. I was listening to you explain to your sister how plants grew and where the Sahara was. 

I was watching you admire Claude Monet and decide you wanted to be just like him when you grew to be an old man (pipe, beard, and all).

I broke down in ugly tears when the occupational therapist finally mentioned autism. Because by then, I knew. I knew what I saw.  Even after all the books I'd read, documentaries I'd watched, having gone through an autism evaluation with your little sister, I still cried at the cacophony of emotion exploding in my heart. I felt so overwhelmed and relieved and grateful and GUILTY all at the same time.  I cried because I felt I should have known, should have seen. I cried because I didn't want to change you. I cried because I didn't know how to stop the struggles and pain you were going through every time we walked into a store with fluorescent lighting or someone started a diesel truck nearby.  I cried because as smart as you were, you didn't understand why things were SO hard. I cried because you wanted so badly to whistle and tie your shoes, but no matter how long you practiced, you just couldn't seem to learn and you thought it meant you weren't special. I cried inside when I watched you want to interact with a friend, but turned away instead because it was just too much for you.  And I silently berated myself.  Why did I never see?  

Maybe, I was blinded by your beautiful soul.  And over the last year as the struggles came harder and faster for you, I found myself finally seeing past the torchlight of your gorgeous, muddy, giggling little boy self.  Finally comprehending that inner-beauty alone couldn't stem the anxiety, control the frustrations, keep you from lashing out, or manage the challenges you were facing.  I watched, feeling helpless, as your behavior regressed and each day became a struggle, your emotions no longer manageable for you.  I knew now you needed help, and it wasn't help I could give by reading you another book or watching a nature video together.  It hurt as I watched you lose interest in friends, in playing.  I watched you out the window as you sat in the hole you so carefully and painstakingly dug, content to run dirt through your hands for hours.  Then I saw.  I saw it all and then I looked over my shoulder and saw a breadcrumb trail of signs that had been there all along.  The stimming, the echolalia, the scripting, the hopping, the flapping, standing on your toes, unable to grasp a pencil, but able to recite sonnets from memory.  And so much later than you deserved, I finally asked for help.

We're on a different path now.  It will, no doubt, be a rocky one. Probably with its fair share of potholes and steep hills.  But I'll walk every step with you, your hand held tightly so you don't fall behind.  If you get tired, we'll rest together.  If you feel like running, we'll run.  Faster and freer than cheetahs on the plain. If it gets too hard and your legs give out, I'll carry you with your curls tucked under my chin. If it gets dark, I'll find a flashlight so we can watch our feet together. We might have to walk in the rain sometimes.  I'll bring an umbrella, and you can carry it. If we get lost and need a map, we'll make one together, complete with compass rose. I'll be your shelter if it gets windy, until you're strong enough to walk alone.  And when that day comes, I'll walk the path beside yours.

Maybe I should've seen you struggle, long before I have.  But I promise from here on out to look through your eyes.  I will feel with your heart, not mine. I will always try to know. I won't.  Not always.  Because even moms can be blind.  But even when I'm blind, I will love you, just as I always have. I will love you so big and so much that there is no measure on earth for it.  I will pour such an infinite amount of it on you, it would be easier to number the stars or count the molecules in the air.

So, my silly crazy boy, at the end of our road, all the things I didn't know and didn't see...and even the things I see now and know.

They will all pale in comparison to how much I love your beautiful soul.

What Special Needs Parents Want You to Know

Special needs parenting is not something I ever imagined before it became my story. Little to no thought on my part was given to parents with exceptional and differently abled children. As an education major in college, I always thought exceptional student education was just not my thing. I didn't have what it took. And back then? I was right. I didn't have what it took. However, fast forward eight years and two special needs kids of my own later, I've found what it takes. Or at least I usually find what it takes. You see, there is no "right stuff" to being a parent of any kid, no matter their abilities or challenges. Having children with special needs has mellowed my thoughts of the right or wrong way to do things. What works for some, doesn't for others. And it's okay. All parents will face judgment of their decisions in some form or another. We'll all get a sideways look or a blatant stare when our child is screaming in the grocery store. As parents, we ask that you don't stare, don't comment rudely, don't roll your eyes or suggest a spanking. *And for God's sake, don't ever touch that child (special needs or not) without permission!*

What we need from you is empathy, compassion, an attempt at understanding that life is hard when you're a kid and doesn't get easier when you grow up.  Special needs children are called special needs because they need more. More support, more understanding, more effort put into accepting them along with their challenges or differences. This also means special needs kids have special needs parents. So, what do we want you to know to help you understand what might help make the toughest job on earth a little easier? It just so happens, I have a list right here...

We hide things from you. (And we're good at it.)
I once spent an entire grocery shopping trip crying silently. It had been a hard week and a harder day. I was mentally and emotionally drained. I had given every ounce of patience and used every strategy in my book to control the behaviors, the meltdowns, the anxiety. And still, I felt it hadn't been enough. My husband must have heard it in my voice because he left work early and met me at the store. He kissed me on the head and took the kids without saying a word. He knew. And as I watched their backs as they headed to the Pokemon card aisle, the tears came. And they flowed for the next two hours as I numbly remembered to get the right brand of cereal and the right flavor toothpaste. No one's heard that story before. And many people wouldn't believe it. We're good at hiding. Because sometimes burying the feelings is all we can do. So next time you see someone inexplicably sniffling over the bologna, if you can't give her a smile, at least stop staring. You don't know what struggle she's got buried under the giant bag of Cocoa Puffs.

We work harder. (At everything.)
I don't mean this one to sound rude or abrasive. I don't mean it to downplay the challenges of others, because I don't know them. All I know are the parents of special kids who work tirelessly and ceaselessly to advocate for their children. They work a regular job and come home only to be on duty of a different kind. They're waking up early, going to bed late, forgetting to eat, forgetting to shower, yet still getting to therapy on time, spending money they don't have to get their kids into the school that fits their needs best. They spent all day serving someone else's needs, haven't done anything for themselves in months, and they know it has to be this way. Even if they don't like it. They have to work harder to make it to play dates, to take a trip to the store, to deal with something that didn't go down as planned. We have to work harder to make our marriages and partnerships strong. Because our kids need more of us and we sometimes forget to save some for each other. We work harder to have friends and remember it's okay to let the little things go. Respect us, please. If our kids don't "look" special needs or "seem that bad", it's because we've worked hard as a family to get where we are. The hardest thing to hear is someone who doesn't see our daily hard work invalidate it before we can explain.

We love when you learn about us. (And teach your kids.)
My son has Asperger's Syndrome. Both my kids have sensory processing disorder. My husband has a cousin who has asked us what life is like for them and how we deal with it as parents. I love her questions. She truly wants to understand their differences. I can't begin to explain how much it would improve my children's (and my own) life if everyone weren't afraid to politely ask, "Sensory seeking behavior? What's that like?" We crave your understanding. We don't want or need pity. We don't need you to do things for us. (Unless you're sending coffee or wine, then by all means -bring it on!) We simply want you to see things from our perspective. And a good start is learning our story. What do our kids' diagnoses mean? How does it shape them and make them who they are. Only through educating yourself can you try to see from their perspective. One thing I absolutely love about sitting in the occupational therapy waiting room is watching my kids intact with kids who are different from themselves. They don't see diagnoses or labels. They see kids. Kids like them, but a little different. And they already, at four and seven, have learned that the differences don't matter. We're all just people and every person is different. As my son said recently, "There's only three types of people. Babies, kids, and adults." The world would be such a beautiful place if everyone else could think the same.


We are happy. (Even if it looks different from your happy.)
We live life to the fullest of our abilities. It may not look like your life or your abilities, but we live it. We are happy. We celebrate moments other parents will forget. I stood in a dollar store and cried tears of joy the first time my daughter said a three word sentence. My heart leapt with excitement when my son asked to leave a function at our local community center because he was able to verbalize his sensory overload! It took seven years for him to recognize that feeling. I was ecstatic and bubbling over as his dad took him to the car to watch Jeff Corwin videos on his tablet instead. We are happy with three hours at a local amusement park, even if we only ride one ride, because it means they knew their limits and were able to transition without a meltdown. We're happy staying home in our pajamas because it means a day without stress and no need to spend the next day in detox and recovery mode. We might be happy that we married such strong, loving people who will never let us down. We might be happy to have friends who get us, family who love us, and children with such dazzling smiles. Our happy is different, but so is our parenting. We're okay with that and you should be too.

The bottom line is, parenting is the toughest job there is, no matter what challenges you or your kids face daily. Respect the journey of others because most likely it won't look like yours. A journey that's different from your own is still valid, still worthy, and still needs to be appreciated. None of us have the right stuff, but we're working on it.

Just Another Day

Yesterday was something for my son that I've heard referred to as "diagnosis day." That phrase always incited a small bll of fear and anxiety in me. It sounded cold and forbidding. Like life as you know it will never be the same after "diagnosis day." For months I've been in a strange place of simultaneous dread and eagerness for an answer. A name to give this entity that has the power to control, mystify, and delight. So yesterday, I sat across from an experienced psychiatrist and at the end of a couple of hours; there it was. The thing that causes my son to have so much anxiety about leaving the house, that causes noises and florescent lights in the grocery store to make him "car sick," the reason he can read with the skill of a child five years older than himself but can't remember how to spell his favorite color, the reason he hops on his toes and flaps his hands when he gets excited, the reason he was stoic when I was in tears because a childhood friend of mine passed away, but was beside himself when I casually mentioned he needed new bed sheets. It's the reason for the disparities in his skill set, his avoidance and ineptitude of social interactions with his peers, his rigidity in not being able to perform a task unless it's on his calendar. It's also why he's so interesting, so verbose, so gifted and intelligent. It means he hasn't had a haircut in over a year because he can't handle the feeling of clippers vibrating or loose hair touching him and he's irrationally terrified the scissors will cut him. He's a scientist, logical and honest to a fault. It blows his mind that not everyone thinks like him and other's mistakes frustrate him to no end. He's currently obsessed with Tolkien, Pokémon, and Abe Lincoln and will discourse about them for hours. He's eccentric and quirky and absolutely beautiful.

 My son has Autism Spectrum Disorder. My son's version of this spectrum disorder is called Asperger's Syndrome. And while it makes him the beautiful, inquisitive, and unique kid that he is, it's not all rainbows and good times. With his Asperger's comes crippling anxiety, obsessive thoughts, compulsive behaviors, vocal and motor tics, possible seizure activity, learning difficulties despite being highly, highly intelligent. It comes with visual perceptual difficulties, auditory processing issues, fine motor skills delay, and a staggering amount of clumsiness. He endures sideways looks and stares from people who don't understand how a kid can look perfectly normal one minute and meltdown from sensory overload the next, effectively reverting to behavior that looks more like a three year old than a gifted first grader. He has vocal tics that he can't control at times. Many people don't seem to understand that he doesn't WANT to clear his throat every forty five seconds; he simply can't stop. He wants to play with the other kids on the playground, but he doesn't know how and it causes him so much stress to think about it, he ends up sitting under the picnic table with a book instead. You will always know where you stand with him because he will give you honest answers, even if you don't like what you hear.

As the psychiatrist gave the diagnosis we knew we'd hear, he said something that resonated with me and my husband. He said, "We use labels for kids like your son to give them answers for their behavior, not excuses for it." My son's diagnosis is an answer. He'll still have to make his bed tomorrow and he will still get grounded from screen time if he hits his sister or speaks rudely to me. He doesn't have an excuse; he has an answer for who he is and how his mind works. I could've hugged the psychiatrist, but my son has taught me to respect the physical boundaries of others, so I said thank you instead.

We left the office and took the kids to the park. I called my mom and told her. She was glad her grandson had an answer that would help him. I messaged my best friend, who happens to be a fellow spectrum mom. I told her the relief I felt. She said simply, "I get it." And I know she does. I asked my son what he thought about the whole thing. He said, "The doctor told me he had lots of other patients with the same things as me, isn't that cool?" I texted my son's occupational therapist (who gently encouraged or search for answers). She texted back, "Welcome to the A-train!"  We are lucky and grateful to be surrounded with support and people who appreciate my son and our lives for what they are:  spectrummy.

My dad said it best, "Today is like any other day for me. I love your children."
 He summed it up well. Our son has an autism spectrum disorder, what some call Asperger's Syndrome. We love him.

And that's it. Diagnosis day. Just another day, but with answers.