Fathers For Autism

I am a road-worn father of an amazing autistic daughter and NT son. I started this blog to provide information, a sounding board and a voice for fathers of autistic children.

More to see on my Facebook page.

Monday, February 25, 2013

Looking In...

Pssst...are you in there?

I know you can hear me, because you smile when I say the words "tickle" or "pickle", but your eyes are far away. 

Where do you go, I wonder? 

Are there unicorns there? Do they dance just for you? 

Am I allowed to dance with them, with you, too? I really would love to dance with you...

Are you conquering an evil Warlord or solving the riddle of the Universe? I bet you could, all on your own. You have superpowers, remember?

You are so strong, so wise, and so smart. You challenge my intellect and stretch me to limit. A limit I didn't even know I have.

Are you coming out today? Can my daughter come out and play? ...please...

I love you so much. You must know that, because you're always listening and I tell you every day.

Wednesday, February 20, 2013

STFU and Listen! - February Edition

Alright men, it's that time of the month again...oh stop, I meant the time where I get a little real and non-flowery. 

Here we go...

* Children, regardless of diagnosis, are still children. 

They want to play, have fun, connect, learn, grow and be loved. 

Your child's diagnosis DOES NOT define them any more than their eye color does. This is one facet of their life and they need to feel like they are more to you than "autistic" or "aspergers" or "insert diagnosis here".

Go play with your children, any way you can.

If that means making a fool of yourself, then, for crying out loud, make a fool of yourself! Do you remember when you played cops and robbers or cowboys or any of the other role-playing games we did as a kid? Do you really think you looked cool and put together? Of course not.

The challenge for you is to find a way to connect with your child no matter how daunting the idea. You may have to try 100 things before you find the right one, but don't get discouraged and don't give up.

They absolutely KNOW when you have given up. So don't.

* Stop blaming!

You are not going to find an answer to your challenges by wasting your time blaming everyone for the cause.

Here's some questions for you: If someone walked up to you and said "You're right! I did it...I made this happen.", will it change anything? Will you then allow yourself to focus on your child rather than the culprit? Will the time lost, due to your frustrations, be worth it?

* Talk to someone!

Contrary to popular belief, we men are not "rocks", "pillars" or "stone". We are allowed to have feelings about this and we need to express them. Maybe not in the typical way, but somehow. I tend to talk to the guys I play sports with or I write.

The more you keep it boxed up inside, the worse the explosion will be when you finally let it out. Trust me, I know. I am one of those who always stored my emotions inside like a vault. No one was allowed in. I figured it was what people expected of me and what was best for the situation.

I was dead wrong. Allowing my emotions to come out gave people insight to how important this was for me, how engaged I was to my daughter, and brought me closer to my family. In the end, it made me a better father because I was able to communicate with my daughter even though she had no words.

* Get off the damn couch and help!

This one likely doesn't apply to a lot of people, but it had to be said.

* Don't use your work as an avoidance.

You know you do it. You justify the heck out of this, but you know it's happening. I did it too.

You work hard every day to provide, clothe, and house your family. It is as important as anything else that you can do for them. Of course, working late, extra hours, and on weekends can bring in more money if you're hourly, but doing it to have some time away from the chaos at home is simply avoidance.

You are stronger than that. You know you are, but you allow yourself the excuse because it's an easy one.

* Pay Attention.

This is probably the most important thing I can talk about. Some days can be a nightmare and, eventually, you may want to zone out. This is a natural human response to uncomfortable or overwhelming situations. It is also counterproductive to all of the work you have done.

If you disappear from your life, you might find that everyone has moved on when you return.

(Again, these are this month's musings. If I offend, that is not my intent. My goal was to lay it out there, open and raw. Sometimes that is the best way to clean a wound, bandage it and allow it to heal.)

Friday, February 15, 2013

My Daughters Wedding...

The familiar music begins slowly and the air fills with anticipation. A low murmur rumbles through the crowd as all heads turn toward the main doorway. There is a quiet, but intense scramble as the patrons on both sides of the aisle fumble for their cameras.

There is a young man on the dais. He is handsome and kind and he looks at the doors in wonder, awaiting the love of his life. He reminds me a little of me, not surprising I suppose, she was always a Daddy's girl. He pulls on his jacket a little, nervous, hopeful, unsteady. He smiles uncontrollably and hopes her day went perfectly.

I can't see him just yet. I'm behind the door, holding her arm.

The door starts to open and the room falls silent, those in the front breathless. The music starts to swell as the bridesmaids and groomsmen pace their way to the stairs, nervous smiles on their faces. The girls have roses in their hair and, for once, love their dresses. The bride styled them individually, she's thoughtful that way. The boys have matching roses on their lapels and are whispering their steps to avoid losing count.

The Maid of Honor and Best Man make their way down the aisle. There is a familiarity and love uncommon in this pairing. She is beautiful and graceful, her dimpled smile lighting up the room. He has tamed his mop of blonde hair and gives a quick wink to the Groom. The Maid of Honor kisses the Best Man's forehead, as any mother would, and they take their places.

My turn. I'm not sure who's shaking more, me or her. I give her once last hug as my baby, she smiles at my tears and brushes one away. I support her arm as the music cues our walk down the aisle.

I think about her journey to this moment and am in awe of her strength, perseverance, and growth. Not just her growth into a woman, even though I still see red curls in pigtails, but her growth throughout her life. Every day flashes before my eyes. I feel her bring me back with a gentle squeeze of my arm.

Her bringing me back...I can't help but smile.

The young man on the dais finally sees her. He smiles. She smiles. I well up with tears.

This man will take care of her now. He will be her shoulder, her rock, her love. I have told myself it will be easy because he is everything I have hoped for in a son-in-law. I find myself wanting to walk slower, the stairs coming too quickly.

I am openly crying now.

I say some words, she looks me in the eyes...in the eyes...and smiles. I look at her one more time, bewilderment and joy blending with a sense of peace. She is simply stunning. Her eyes are shining and her hair in fiery curls down her back. She wears her gown as if born to it, and is unafraid and confident among the stares. She has always been unafraid. She is my little princess all grown up.

Her eyes stay a moment longer on mine and then turn towards the young man. I guide her hand to his. I suppose I have been working for this exchange her whole life. He takes her hand gently and leads her to the stage as I sit down.

My work is done.

As I watch them, I reflect on her life yet again. This time all of the successes, the small victories, the little smiles. She and I have been through a lot together, she is now ready to keep going. She has outgrown me and I am so incredibly proud of her that she did.

(This is my dream, my fondest wish. I hope for this every day and fight for this every night. I can't know if I will ever get here, but that I can dream it makes me keep trying. I will now cry a little more, as I have cried while writing this. Thank you for taking this journey with me, you make these dreams feel more attainable.)

Friday, February 8, 2013

Friends...


I'm having lunch with an old friend tomorrow.  He and I have been friends since just after High School (20+ years) and have drifted apart over the last 5-6 years.

The same period of time since my daughter was diagnosed as autistic.

We used to hang out all the time.  We got together for holidays, sporting events, Birthdays, or just to simply enjoy each other's company.  He hosted my daughter's first Birthday party at his house and we used to talk on the phone at least every other day.

So, what happened?  What changed?

I imagine many of you have already considered the potential answer: my daughter's autistic and he couldn't deal with it.  Possibly.  My group of friends has definitely diminished over the years and I am not so affable a guy that I give people the benefit of the doubt when the evidence is so damning.

But, is that a fair conclusion?  Am I simply condemning him without trial, without confrontation, without proof?  What other reasons could there be?

As with all things, I first looked at myself.  As a mere human, I am incapable of forcing someone to think, decide or act a certain way.  I can present my arguments, provide direction, and even try to manipulate a response, but I can't bend people's minds to my will.

Yoda, I am not.

So, what about me?  What did I do, what actions did I take, how did I change and how could that have had an impact on our friendship?

Once I asked these questions, I instantly came up with a hundred answers.  The most glaring is my forced isolation due to the chaos associated with an autistic household. My house was a wreck in the early days.  Total, complete nightmare.  I never let anyone over and was always too busy to go anywhere but work/therapy/grocery/home.

I also didn't call as much.  Mostly because I was so scattered that I usually remembered my friends during the last 4 minutes before I passed out for the day.  When I did finally talk to him, my conversations were usually autism-centric and complaint-driven.  I must have been a blast to talk to.

In retrospect, I wouldn't have wanted to hang out with me much either.   That said, the person I am today, after going through this journey for a while, would have fought to maintain the friendship regardless of the challenges.  Friends are simply too rare and too valuable.

The big question is: Do I let him off the hook?

Of course I do.

I always have to remember that my friends, who do not have autistic children, couldn't possibly understand the life I live.  Unless you have gone through the inner turmoil, fear, doubt, mistakes, small victories, meltdowns, breakdowns, rebirth, growth, and daily mental arm wrestling that we have, you just don't get it.  You can't.  It's not fair for me to assume you can.

Could he have done more?  Absolutely.

If I was him, having never lived this life, would I have done more?  No idea.

The fact remains:  Friends are too rare and too valuable.  They are often flawed humans who don't understand, but the good ones want to and the great ones will always be there for you, even if they have no clue how to help.

Thursday, February 7, 2013

Autism is not contagious...

Please excuse the inflammatory title, but it needed to be said.  

Over the past 6 years, I have noticed that people tend to have a visible reaction when they discover that my daughter is autistic.  I have seen people become upset, confused, sad, repulsed, empathetic, scared, typically a negative response.   The reactions are more subtle when we are in public, but the underlying themes are the same.

(My first reaction was fear and uncertainty.  What do I do?  How do I fix it?  Where's the duct tape???
I've since embraced the fact that there is nothing to fear and duct tape, although highly effective at making refrigerator box forts, would not help.)  

The interesting thing for me is watching parents 'protect' their children from mine.  As if, by contact, their children could become autistic as well.  Although I don't know if there has been a certified scientific study performed, I am fairly confident that autism cannot be contracted by sharing a slice of pizza or riding next to someone on the bus.  

Unfortunately, this reaction is not uncommon and causes some challenges when trying to arrange playdates with classmates, inviting kids to parties, or being invited to parties.  

My daughter loves her friends from school, but seems to be omitted from the guest lists more often than not.  She plays with many typical children at school who adore her.  They embrace her differences and are always trying to bring out the best in her.  With any luck, they will be a positive influence on their parents...

Dragon Slaying...

To my friends who have questioned their life, their path, and their strength to keep going:

We all have had those days. It's good to admit it, get it out there and face it. Sadly, too many people will take it to the next step and act on it. Run away, leave, phase out, lash out, cheat, lie, blame, or simply become apathetic.

This life is a reality that we need to embrace as a day to day existence with life-long hopes and goals.

One of the pitfalls is comparison. We look around at other parents with typical children and wonder "Why me?". It's not a valid question, because you will find no answers.


My son is a typical boy who will be turning 5 tomorrow. By all accounts, he is progressing as any child his age would...by that, I mean he is kind of a jerk. It's not his fault, he's a boy, he's almost 5, he has my genetics...he's supposed to be a jerk.

I have often said that my son is a lot more challenging than my daughter even though she is autistic. He causes more headaches, more frustrating moments, and higher blood pressure. More than one time I have looked at him and thought "could you please just not be you today?".

If he were my only child, I imagine I would be wondering "Why me? Why did I get such a difficult child? Why couldn't I have gotten one of those nice ones I see on TV? You know, the spunky ones who ask all of the right questions and help the hero solve the murder."

I mention my son because it is all about perspective. He can be a handful, but he presents the types of challenges I expected as a father and am well-equipped to handle. Mostly because I was a jerk too, so I know where he's coming from.

I wasn't expecting my daughter. I didn't know what to do, how to 'fix' it, who to talk to or what to say. I was, at first, completely lost. There are days when I still feel that twinge of uncertainty because she throws a slider and I was expecting a fastball.

I had to let go. Let go of expectation, ego, comparison, pre-existing knowledge, and my over-whelming need to fix things. I needed to accept things as they are and accept her as who she is. Period. 

That doesn't mean become complacent. Oh no. 

It means that I had to embrace my new existence, build new expectations, and be proud of my life. You heard me. Proud. 

Anyone who gives themselves to the challenges of an autistic household has the right to stand up and be proud of their life! This is hard. This can be defeating. That said, those that find hope in a properly held spoon or a grocery store visit without a meltdown are silent champions who deserve the admiration and respect of those around them.

You certainly have mine.

Your child needs you. There is no question about that. You are the dragon slayer, the guide dog, the warm blanket, and the barrier against the storm. Your impact, every hour of every day, is immeasurable. 

Be proud of who you are, what you do and the challenges that you face. You are definitely not alone. There are a lot of us out here who are going through it as well. None of us are perfect, but we keep going because we know that our children need us, they're worth it, and, if we don't, who will? 

I will be my daughter's champion for as long as she needs me and several years more. For those that choose to champion their children as well, it is an honor to slay dragons with you.

Princess Class...

I took my daughter to a Disney Princess class today. Basically, it's a theater class for 5-8 year-olds where they dress up as Disney Princesses and rehearse to perform a show. 

Although she was clearly different than the other girls in the class, there was no mistaking the positive differences. 

My daughter was fearless. 

As a former performer, I can tell you that almost every performer I have met is insecure. In fact, it is this insecurity that drives us to seek the attention and affection of complete strangers.

My daughter couldn't possibly care less what others thought of her. She heard the music and started singing along as if the song was written for her. Which, to her, it was.

It was when she started dancing across the stage while belting out a chorus that the other girls in the class started smiling and wanting to dance with her. Their fear and embarrassment kept them attached to their chairs.

This all happened before class even started and this was the first class.

At the break, all of the girls danced and sang together on stage. Their fear and insecurity minimized by a spunky little redhead who showed them the way.

And, yes, Daddy was up there singing and dancing Princess songs too.

Armor...

My armor is pretty strong. I've been told that, in many cases, it's too strong. 

Not only does it keep me insulated from the harsh outside world, it protects me from feeling, expressing and hurting too much. 

In essence, it keeps everything in and everyone out. 

"There's no time for that right now". "No one wants to hear me crying or whining". "It's not about me and my stupid feelings". "Nobody gives shit, nobody cares, so why should I bother?".

Solid. Those are some pretty solid excuses to not open up. The one that I didn't mention was "Look, I have a lot of emotions about this and, if I open up just a little bit, they'll all come rushing out".

I have said every single one of those excuses and, for the most part, believe them wholeheartedly.

Doesn't make me right. Certainly not healthy.

About three years ago, I was driving home and a song came on the radio. It was called 'Hurt'. I hadn't heard it before although it was apparently a fairly popular song.

About three minutes into it, I was crying so hard I had to pull over. I couldn't stop crying...it was like a dam burst and all of the bottled up emotion rushed out.

When I was done, I laughed for a while. Not at having to cry, or the song or how ridiculous I felt. No, I was laughing because my wife was right. Again. She told me I would either have a heart attack or burst into tears at a moment's notice.

She was right. Dammit.

That day marked the first real break in my armor. Honestly, I wouldn't have done it voluntarily, but it was eye opening. I started allowing emotions other than anger and fear (safe emotions) to live on the surface.

My wife noticed, my friends noticed and, most importantly, my kids noticed. It was like they had a new Dad. One that experiences with them. One that is reachable, open and unguarded.

They felt, rather than heard, that I loved them.

Open up. Let the armor fall a little. You will be better for it. I know I am.

Batman


Toddler


Leo




My daughter saved me from myself...

Like a lot of people, I was caught up in my own expectations of what I thought life was going to hold for me. I had it all figured out and the powers that be were simply going to mold the world around my ego. 

My ego was enormous and not in a good way. 

You see, there is a lot that can be accomplished if you have enough arrogance to assume you are entitled to it. We have built a society that caters, in many ways, to this concept.

Unfortunately for my former self, relationships are not one of these things. You are not entitled to love, respect or a healthy marriage. Also, your ego can't raise children.

Sounds funny and stupid, huh?

Sadly, there are a lot of guys out there who think this exact way, they just don't spell it out for themselves like this. They would prefer that their wives continue to 'hold the fort' and be enamored with them while they work, hunt, play and be generally disengaged.
This concept doesn't work in any situation, but especially not in an autistic household.

Our egos are irrelevant. In fact, they are a barrier to progress, connections, and the future of our relationships and children. Yes, it's like that.

For example, before my daughter was born, I thought about all of the Daddy/Daughter things that I was going to do with her. Dances, socials, Sweet 16, etc. I also wondered whether she would be like Mommy or Daddy, whose eyes or smile she would have, whether she would be funny like me or charming like her. Typical things, but unfair and in the way.

My daughter opened my eyes to the fact that she is who she is, not who I expected her to be. That said, she is so much more than I ever thought she would be and she amazes me every day.

The thing is: she can only amaze me because my ego is no longer in the way. I can see her now.

She saved me from myself. She made me a better Daddy, husband and man. The least I can do is live up to her expectations. :-)

Lessons from Disneyland...

* The Guest Assistance Card is a lifesaver. Much like a Fast Pass, this will get you to the front of the line which, if your child is as patient as mine, can make all the difference. 

* The Producers of the Alladin show are pretty awesome. There is a wheelchair bound lady in the cast and they incorporated her into the show beautifully. 

* The Fast Pass guy at the Cars Land racing ride is kind of a jerk. Ok, it's true, we were 10 minutes earlier than the return time indicated on the card, but he didn't need to be an ass about it. Besides, when you see a little girl drop to the ground and scream in frustration and disappointment, you might make an exception.

* The guy who works with the Fast Pass guy is pretty awesome. When he saw us on the side, my daughter now vomiting from stress, he made sure we made it through without incident. He went with us all the way to the ride.

* I can carry 75lbs indefinitely. My daughter got stressed from the crowds and wanted to be carried...all day. Between the backpack, full of medicine, clothes and food, and my daughter's squirmy body, my arms, shoulders and back got a wicked workout.

* Small World is evil. It seems every time I enter that ride, it breaks down while I am in there. Did you know it's a small world after all? I do.

* The diner in Tomorrowland is a great place to watch the fireworks. Seriously. No crowds, you get to sit comfortably and eat dinner.

* Several places are shutdown during and after the fireworks. In our case, the Peter Pan ride and Pinnochio. It takes the fire dept 50 minutes to check after the show.

* Have a plan. We knew exactly where we were going and was able to prep my daughter all along the way. Outside of Carsland and the 40 minutes after the fireworks, it was all good.

Illness...

Sharing. We teach our children to share: their toys, a tasty snack, a kind word or two. 

Today's share was a different kind. One that I know all of you have received from your children more than once. 

Illness. 

Yup, my daughter showed her love, affection and generosity by sharing her sore throat, headache and fever with me. You see, she is starting to be on the mend, but felt that this viralgoodie was too delicious not to give to Papa.

I knew it was going to happen. She had sneezed on me quite a bit earlier in the week but was well enough for Disney, so I thought we were out of the woods.

Oh no, the Redhead is far too sneaky for that. She knew. I could tell by the slight smirk that she had a doozy for Daddy.

So, SuperMommy has a sniffling girl, a needy boy and a 200lb baby to take care of. I am grateful she is up to the task, but wary of the "gift" knocking her out too.

We need her.

Advice From The Redhead...

My daughter makes me laugh. A LOT.

Whether it's reaching out and patting my bald head with a sad, little face as if to say "Oh Daddy, your hair ran away...", or when she starts laughing with that beatific, infectious smile and draws you in to her joy, she has the innate ability to peel away your grouchiness and replace it with a warm coat of happiness.

In talking with a lot of other parents, this is not uncommon, but seems to get lost in the therapy, tantrums, stimming and so forth.

Which is tragic.

So, here's some advice to your kids from the Redhead:

* Gummi Bears, when squashed into a sticky mountain, make an excellent addition to any carpet or hardwood floor. My Little Pony, trucks and stuffed animals stay put when you put them on it. For advanced players, add toothpaste for lava...

* Some words sound like other words. "Fork", "funk" and "sheet" can cause Mommy to glare at Daddy, which is hilarious...

* When asleep, little brothers make excellent Sharpie tigers.

* Slick tiles + water from sippie cup + Daddy's big feet = hours of laughter!

* If you curl your toes just right, you can prevent almost any shoe from getting on your feet...stare at Daddy's face when you do this.

* Shakes or soup? Still working out which makes better bubbles...

* The trick to fake sleeping is loud, steady breathing. Usually only takes 2-3 minutes for Daddy to believe you. Wait another 15 minutes for him to get comfortable or fall asleep, then "LA LA L-LA LA LAAAAA!"

* Fart on Daddy's lap. Seriously. Then laugh and run away.

STFU and Listen - January Edition

Men, I understand that you don't want to be preached to, patronized or told how to raise your child. 

I get that. I am totally the same way. 

Here's my promise to you: if you can take a moment to read what I have to write, think about it in context with your situation, consider what makes sense and what doesn't, and make logical changes as needed, I promise to keep this page clean of BS, pretense, and patronizing condescension.

OK, so here's some tough love...keep in mind, a lot of this may not apply to you, but needs to be said.

It's not your wife's problem. Say this to yourself until you start believing it. It is not your wife's problem. It's yours. This applies to so many things, but recognize that you are in control of your actions and need to take responsibility for more than just what you've allowed for yourself. Man up and own this. Learn your child, their therapy, their needs, your wife's needs, etc. Be able to anticipate, plan ahead and compromise. You are your child's champion, fight for your child. If you don't, who will?

Stop avoiding reality. This "Autism thing" is real and isn't going away because you ignore it. As I have said to many people, "If, 15 years from now, you find that your child is not able to live an independent adult life simply because you could not be bothered with therapy, follow-through, and an hour or two a day of your time, what kind of person does that make you?".

Let go of your expectation of who you thought your child was going to become. Seriously. This is one of the biggest issues we face as parents and it is even more so in an autistic household. It's BS. It isn't valid in any situation. Your child will show you who they are, not the other way around. Your expectations are clouding the situation and getting in the way of your relationship. Drop them and open your eyes to the person in front of you who has a much more challenging road than you do.

It's OK to not be good at this. None of us are. We are only experts in hindsight. We're all crap until we've done it. Feel free to ask for help, advice or a sounding board. This is hard stuff, no joke, and to expect you to understand everything before you've had a chance to digest the information is unfair and unjust. Just don't use that as an excuse not to learn.

Calm the heck down!!! You know what I mean, so just calm down. None of this is 'easy', but it's certainly a LOT harder if you're angry all the time. Take a moment to regroup if you need to, then jump back in, but recognize that this is challenging for everyone, most especially your child.

These are this month's musings. If I offend, that is not my intent. My goal was to lay it out there, open and raw. Sometimes that is the best way to clean a wound, bandage it and allow it to heal.

Lies...

My daughter doesn't lie.

There is something very real about that concept. I feel an extra sense of responsibility when I talk to her because of it. Almost as if her truth is challenging all of the little, buzzing lies that swarm out of my mouth on a daily basis. Not big lies, mind you, but the kind of lies that we, as a society, have come to understand as normal behavior.

For example:

"Hey! How are you doing?" "Oh, I'm fine."

"Did you like that dinner I spent 3 hours cooking for you?" "Oh yeah, it was great!"

"Does this dress make me look...?"

You get the picture.

With my daughter, you always know where you stand and what is expected of you. She certainly has no qualms providing feedback on things that are unsavory, inedible, or 'non-preferred'. In fact, she will gladly let you know what's what, and usually without concern over whether her style was uncouth or socially acceptable.

Unfortunately, her words aren't always as forthcoming as mine and that is where my masterful sleuthing skills come in handy. Oh, I don't go around puffing on a pipe or anything, but I can figure out the difference between frustration, anger and gas at a glance. I am also fortunate enough to have a fairly pleasant speaking and singing voice which tends to calm her down long enough to work out more complex issues.

For me, the real challenge is whether to adopt her style of truth without compromise or to continue to finesse conversations with white lies. I feel an obligation to try it her way, but I'm not sure if society is ready for that yet.

There's an irony there, of course. My daughter can bluntly speak the truth to total strangers and they accept it charming and adorable, but my truths are considered boorish and rude.

And yet, it's simply the truth.

Perspective...

Perspective is a brutal mistress. She smiles at you sweetly, then slaps you in the face. Hard.

Two years ago I had a double mastectomy. 

I'll let that sink in...took a while for me as well...

Yup, after several specialists and a lot of introspection, I decided that the risk was too great and had everything removed. I am part of the 1%. One of 2,000 men who have breast cancer-related surgery every year.

The surgery was long, the recovery was longer and I had an awfully long amount of time to think. For those of us with over-active minds, sitting and thinking for days on end is never a good idea.

Now, before you think this is a cry for sympathy or a call out to fill my page with comments, understand that this information is merely to illustrate the sharp right turns that Ms. Perspective can force you to make. Of course, I never saw it coming and still don't think that I have allowed it to fully permeate my psyche, but it did have a profound impact on my priorities.

First, I realized that I wasn't any good to my family dead. Harsh, painful, honest. I HAD to start taking care of myself.

Then, I shortened my list of close friends and broadened my respect, admiration and love for those within my inner circle. The cliche of 'your true friends are the ones who stand by you when times are worst' is absolutely correct.

Finally, I needed to experience every moment of every day. I am still working on this. Life has a way of forcing routine which tends to foster complacency. It is in our nature to follow a pattern, find security in it, and embrace that security due to fear of change. I have made many impactful changes over the last two years due to the understanding of the frailty of life. Not only my life, but all those I care about.

Today, I spoke to a dear friend of mine about breast cancer: the surgery, the recovery, risks and so forth. She is going in for surgery in a couple of weeks to remove a cancerous mass.

She is scared. The Mistress sucker-punched her. I plan to help my friend heal her wounds, find her way, and make it through this.

Please...kiss your children, hug those close to you, love yourselves. There are no guarantees, except for what you do today, right now.

Crocs...

Bought some Crocs for my daughter today. 

I didn't really want to, but I did it on faith. 

Some highly intelligent people had mentioned that ASD children tend to have an affinity for Crocs...so I bought some.

Now, I feel kind of dirty. Like the time, back in High School, when I poured Frosted Flakes on my History teacher's lawn...he was mean, threw erasers at people, I still feel bad about it...

It's not really about the shoes. Although, I do find the shoes to be rather hideous, even though they have Hello Kitty on them. OK, maybe the Hello Kitty makes it worse for me, I'd much prefer my son's Spiderman shoes...just sayin.

You see, I have always been someone who builds, fixes, or otherwise finds solutions to problems. I analyze, read manuals, troubleshoot, research and then make a decision. It wasn't until my daughter was born that I really started listening to other people's advice.

Of course, my ego was in the way.

If there is one thing that has made the most difference in my relationship with my daughter (and anyone else for that matter), it would be when I let go of my ego and opened my mind. It wasn't easy, but it was like a veil had been lifted and I could finally see her for who she is and not what I wanted or expected her to be. Obviously, I still work on this every day and have to check myself when I feel like I might be putting the ego-goggles back on.

Which brings me back to the shoes.

I don't feel dirty over following someone else's advice. The unclean feeling comes from my initial internal reaction to puff up my chest and reject the concept until I had proof. My ego again, rearing its ugly head. It doesn't happen much any more, but when it does I always think back to who I was before my daughter cracked the hard candy shell to find the soft, nougat-y center in the middle.

I don't miss that man and I am glad he only pops up when I am out buying ugly shoes...

Not Ready...

"She's a big girl now and should learn to do that on her own..."

This statement has many applications. I'm sure many of you probably just thought of several examples. In this case, my wife was referring to my daughter being able to fall asleep by herself. She tends to want to cuddle on Daddy's lap before bed.

Of course, age and size have nothing to do with where in her development she 'should' be. Those that believe as much tend to be the same people that give disapproving looks when I am out and about with my daughter. They consider her to be 'unruly', 'obnoxious' and, my personal favorite, 'misbehaving'. Once they are done passing judgment on my daughter, they turn their steely gaze on me as if to say "You're unfit to be a parent and should be tarred and feathered and run out of town on a rail!"

Pththththththt!

To those that would condemn, judge or condescend: I have two girls and one boy that I need to impress on a daily basis, you are not allowed within my circle of impressiveness. Don't worry, whenever I start to feel too impressive I can always rely on my wife to, with one look, place me firmly back into the cold doghouse of humility. ;-)

With regards to my daughter's inability to fall asleep without Papa Bear, my wife and I both know that my daughter is starting to assert her independence. We know that she is ready.

My wife wasn't talking about my daughter. She was talking about me.

Because Papa Bear isn't ready...

Sacrifices...

Like many of you, I have sacrificed many of my own aspirations for my children. 

Is this a good example? 

Should they struggle and not have what they need because I wanted to be or do something other than what I am doing now?

Is there a bitterness associated with those questions? Not for me. I made my choices and am at peace with them, but I imagine there are many who go through this inner struggle.

Some choose one path, some choose the other.

Would a blend satisfy either? Not likely, but I am curious to talk to those who have tried.

I don't ask these questions due to a chink in my armor. I ask because I went through this struggle a while ago and still name it one of the greatest battles of my life...bloodless, but a battle filled with carnage in any case.

In the end, I feel I won. I wouldn't know if I didn't, but my kids are growing, expanding and without fear or worry.

That is a victory, to be sure.

My Wife...

My wife is extraordinary.

Although this is true, it seems a little lacking in magnitude. 

I could include gorgeous, funny, wicked and charming as descriptors, all of which are true, but they aren't really pertinent to what I'm talking about. 

Instead, I will try a list to see if I can properly convey the entirety that is my wife's awesomeness:

* She is clearly stronger than I am. 

She chooses to teach Special Needs children as a profession while coming home to an autistic child at night. She could do any other career she wanted, but decided to make a difference as a teacher. Yes, I am always called upon to brutishly carry heavy things from point A to point B, but she is, without question, the pillar of strength in this family. It's funny, because she often refers to me as her 'rock', but I would be nothing but wet sand without her to hold me together.

* She is insightful.

Kids fall down, they cry, they run to their Mommy. Kids get scared, they cry, they run to their Mommy. Kids go to their room, they fall silent, Mommy runs to them.

* She is patient.

In our world of ABA, DTT, IEP, and other fun acronyms, she manages to see the log-term big picture and doesn't lose her cool over short-term setbacks. Meltdowns are normal, she says, like the waves of the ocean: some are smooth, some are rough, you just ride out the rough waves until they pass.

* She is tireless.

This life is not easy. There are days when you want to throw your hands up and say 'Enough!'. My wife thinks these thoughts, just like the rest of us, but she linebackers them aside and keeps going. This is not due to a lack of self-worth or a sense of martyrdom, it is because of an understanding of her value and impact to our children.

* She is a Ninja Butterfly

Life changes every day. It throws curveballs, fastballs, and sometimes tries to knock your helmet off. My wife adjusts to all of these changes as if she was prepared for them, waiting to metamorphasize. At her core, though, remains the amazing woman I fell in love with many years ago.

She is my daily hero. She is my inspiration. I am, quite humbly, her life partner.

Resolutions...

New Year, new month, new day, new hour, new minute, or new second...changes happen moment by moment. 

I imagine people use the yearly milestone to refresh expectations, goals, and hopes. This is fair, I suppose. It just doesn't seem realistic in an autistic world. 

Of course, you can definitely make long-term goals (see: IEP), but we all know that they are mostly ethereal and don't have an immediate place in a minute-by-minute environment.

So, what to do about the trend of New Year's Resolutions? Hmm...

I resolve to be more patient. Not only with my family and friends, but with all of those people who judge, condemn and condescend.

I resolve to try to be healthier. This seems like the standard resolution, but mine is not for a bathing suit or date night. No, mine is to be around longer for my daughter...she needs her Daddy and I need to respect that by challenging myself to live longer.

I resolve to be the example of the man I want my daughter to marry.

I resolve to breathe when I want to grind my teeth, to smile when I want to growl, and to strangle my steering wheel less. My steering wheel didn't cut me off...

Moving...

We're moving. Yup, during the holidays, we are moving to a new home.

For parents of an autistic child this is about as appealing as standing naked on a step stool in front of a pan of hot, sizzling bacon. (Many of you just cringed, myself included)

My house is a nightmare of boxes, dust, sharp objects, swallow-able things, and controlled chaos. Of course, we have supplemented the madness by adding a bunch of new, exciting toys on Christmas day. Fortunately, this has diverted enough attention to allow my wife and I some time to box up the most dangerous items and clean up any interesting dust bunnies that were discovered behind bookcases.

The real challenge is keeping my daughter calm during all of this change.

So far, we have been mostly successful, but we have 3 more days until the move and then the transition to the new place.

Or strategy is this:

Pizza, movies, park, iPad, 'Hey, look Honey, you get to see how your bed was made', movies, iPad, walk, Wii Dance, secretly pack up 1/3 of her toys, tickle time, Daddy dances funny, park when movers arrive, party, iPad, 'We get to go on an adventure in a new house', Mommy and Daddy scrunched into her bed with her, movies, iPad.

The x-factor is my Son who is very adept at play-by-play. He can, from 3 rooms away, tell my daughter what his parents are doing despite our mad ninja skills. Of course, he's very excited about all of this change and can't wait to get to the new place, so we don't want to squash his positivity, but we need to find a way to keep him from setting my daughter off.

We are thinking duct tape and bungee cords, but I've heard that might chafe after a while...

Any suggestions?

Breakthrough...


Had a pretty significant breakthrough last night, so I apologize for gushing about my daughter, but it happens from time to time...;-)

I was lying in her bed, trying to get her to go to sleep. As many of you know, this can be a daunting process without morphine and a sledgehammer, but we do what we can. 

She was replaying the day's events in her head and starting babbling. She often doesn't realize that she is talking and that her words come out as simple sounds rather than full words. I tried to regain her focus and asked her to turn off the video in her head so she could go to sleep.

She stopped her sounds, looked me straight in the eyes and said calmly "Daddy, don't push me.". It was as if the window had opened and I was allowed a brief moment inside. I saw clarity, intent, and a fierce, keen intelligence.

Having worked with her every day for 7 years, I knew this was there, but I rarely get to see it and usually not so abruptly.

I put my head down on the pillow next to her and watched her for several minutes as she slowly relaxed and went to sleep, marveling at the complexity of her mind.

Of course, these brief moments are always bittersweet. They bring me to tears because of the gift of that moment, the gift of her life, and the hope for moments to come. Sadly, the happy tears always dry up. They are the cheesecake you know you shouldn't eat, the fizzy pop song you know you shouldn't like...they are a guilty pleasure, but one taken greedily and without regret.

As I woke her up this morning, I saw that she was closed again. It's OK. Like working out for that cheesecake, I will continue to run hard on the ABA and Adaptive Skills treadmill for another slice, another song, and another peek through the window.

PTSD...


I was in my son's class yesterday for a Holiday party. As I looked around at all of the little faces, I glanced up at the door and imagined a man walking in, killing at random. I couldn't tear my eyes away from the door...another parent came over and asked if I was ok and broke me out of my trance. 

I then walked over and hug my son fiercely, which elicited a 'Daaaaaad...'. 

People often say "I can't imagine...". Sadly, I can. I am cursed with the gift of a vibrant imagination and I can imagine the horror, the fear and the last moments of those scared, helpless children. I can see my son's face running and screaming. I can see my daughter not understanding the noise, covering her ears and walking towards the gunman, reaching out to the gun to stop the offending sounds.

I can't imagine living without my children, knowing their last moments. I can't imagine the futility of my anger and grief. I can't imagine knowing that there was nothing I could do, say, or change that would reverse time and bring my child back to me.

My imagination isn't strong enough for that.

Sleep...


45 Minutes. 

That's how much sleep I got last night.

You see, my daughter had gas pain and would wake up every 30 minutes screaming. She had long since passed the offending gas, but was re-living the experience in her head again and again. 

So, I folded myself into the 1/2' X 6' rectangle that was the edge of her bed and stayed with her all night, comforting her with my presence and words so she would calm down enough to sleep.

Being able to watch her face calm down, relax and then drift into peaceful sleep in one of my favorite things.

Of course, when you first started reading this, you thought I was complaining of my lack of sleep. Quite the contrary, I was given the gift of being able to be my daughter's Daddy...compared to that, sleep is over-rated.

All Eyes On Me...


We went to Chuck E Cheese tonight. As we were leaving, my daughter had a pretty serious meltdown because she was having a good time and didn't want it to end. 

Of course, several of the parents there thought my daughter was simply misbehaving. 

As my daughter was rolling on the ground screaming, and I was kneeling next to her repeating soothing words, I could feel the collective disapproval in the room.

Don't worry, it doesn't faze me or adjust my focus on my daughter, but it does make me sad that there isn't more understanding and tolerance.

Eventually, as I was carrying my 57 lb angry badger out of the building, I stopped very briefly and smiled to those looking, making eye contact with those I could see.

Interesting that I work every day to make eye contact with my daughter, but people that disapprove don't want to make eye contact with me...

Crying...


I was reaching out to other autism sites today. I found a lot of common themes: frustration, fear, loneliness, confusion, anger, and regret. Of course, you anticipate that when meeting people who face a challenge like autism. 

What I was not surprised to see, though, was the love, adoration, hope, joy, and pride in their children. Not surprised at all.

I feel all of those emotions every day, the good and the bad. I feel no shame over my acceptance of my weaknesses because I am proud of them. They show me that I am not just human, but open to the array of internal conflict that comes with the territory. That openness brings me closer to my daughter: my fear, my anxiety, my elation, my joy are equally valid and equally important in my evolution as a father.

I cry. I tell myself it's ok to cry.

I cry when I'm sad and I cry when I'm happy. My wife elbows me in the ribs and, with a grin, calls me a big baby, but I am proud of myself because I am comfortable with the fact that my daughter is important enough to me to be able to cry.

Frustration...


Frustration is normal...at least that's what I'm told.

It's funny, I never feel normal when I am frustrated. I feel out of balance, out of sorts and somewhat out of control of my emotional state. I suppose 'typical' is a more accurate word, but, if I only get frustrated in a-typical situations, does it really qualify?

Of course, I have as many (if not more) frustrated moments with my typically developing son as I do with my autistic daughter, but the style and situations are very different. When I first considered being a parent, I knew the challenges it would bring and those are the ones I face with my son: acting out, need for attention, pushing boundaries, etc.

What I never expected was limited interaction, lack of focus and attention, lack of environmental awareness, sensory sensitivities, and a delay in speech, motor skills, and social skills.

I just assumed my child wouldn't have those challenges. I was banking on being able to communicate, to reason, to negotiate.

That was my assumption. Never a good way to start a relationship...

So, when I find myself frustrated, I go back to my assumptions and ask myself whether I am frustrated because I assumed it would be easier to communicate, to reason, to talk things through. If so, I take a deep breath, let go of my assumptions and begin again.

It's not always easy, but it puts things in the right perspective.

Sharing...


I dropped off my daughter at school today and saw a fellow autism parent who I hadn't seen in a while. I pointed out how great it was to see her son sitting calmly and patiently in line, waiting for the teacher. Last year, he would refuse to wait more that a few moments before wandering off or having a meltdown.

She was both excited at his progress and relieved that I noticed. It took me a second to understand this relief and then came to the realization that she had no one to share his progress with.

We spoke for a bit on his changes and I watched her go, wondering at how isolated she must feel.

It is because of people like her, amazing parents who feel alone in this daily challenge, that I choose to speak out, advocate, and communicate.

A Healthy Lunch...


I was at a business lunch today and the subject of kids came up. I mentioned that my daughter is autistic and the two guys I was with both lowered their heads.

The older gentleman said that he just found out a year ago that his 17 year old son is autistic. He said that it changed his perspective on how he parented (less demanding, less harsh, etc.).

The other guy also said that his 8 year old son is autistic and that they recently purchased a house in a less desirable location so that they could be closer to a better school.

The interesting part for me was that these two have been working together for 10 years and neither knew about this until today.

They left lunch talking quietly to each other about similar challenges and goals...excited about not being alone.

I left there knowing that I saw something special happen right in front of my eyes...simply because I was not afraid, ashamed or concerned with the topic.