TIME for Action - 2012 Blogging Advent Calendar Day 4

Yesterday I was stunned to see that on my friend Luau’s personal Facebook page he posted a link with a few choice words to the following article and headline written by John Cloud (@JohnAshleyCloud)  that appears on TIME’s Health and Family section:

Windows to the Soul - 2012 Blogging Advent Calendar Day 3

Before Bianca regressed, her eye contact was nothing short of incredible. She has the biggest eyes and she would look at me with such intent and curiosity that I knew she was absorbing everything coming her way. Just locking eyes with her from across the room would make her light up like a Christmas tree.

At some point in her regression, like most autistic children that particular characteristic went away. In fact, she started going out of her way to avoid it. At first I tried to make her look me in the eyes. After some research, I quickly learned that was probably not the best course of action. I would just let her do what she felt comfortable doing. If she felt like looking me in the eyes… so be it.

You do miss it though. What is it about that particular part of our anatomy that conveys so much? She would often come close. She would watch my mouth a lot; stare at my nose… but the eyes? Very rarely.

2012 Blogging Advent Calendar

I thought I would do a little something different this holiday season. In honor of the time of year that it is, I would like to start a tradition of a Blogging Advent Calendar.

I don’t normally post on a daily basis. I don’t have the time for it. I don’t have the energy for it. I am also pretty lazy when it comes to writing. If my juices aren't flowing, it is hard for me to write. I have tried to just sit down and just write a post when I have nothing in particular to share… just to see what comes out. The answer: nothing.

I do however make great headroom in tweaking my iTunes library, playing Sporcle games or getting caught up on a television show that until I forced myself to write about something had no interest in watching.

I am so lazy in fact, that I am starting this advent calendar on December 3^rd, but writing this post as if it were the first day of December.

So here goes nothing, 25 days of autism-centric musings by yours truly. I will probably be reduced to writing about the day to day minutiae as opposed to larger topics that I like to tackle, but it should be fun and hopefully you get a kick out of it.

If you like what you have seen and read, please take a few seconds and vote for Lou's Land as one of Babble's Top Autism Spectrum Blogs. (Though I think this site is all kinds of messed up)

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

To keep up to date with everything Lou's Land, please subscribe to my blog, "Like" me on Facebook and follow me on Twitter.

Holiday Help

Holidays can be an extra stressful time for autism parents. We have all the regular stressors that any other family has coupled with autism-proofing decorations and presents, dealing with expectations that we show up to all the family functions and handling the stress that comes from those family functions like trying not to blow our top at the stares, the patronizing tones, the judgment, the pity and of course keeping all of the breakable keepsakes that have been handed down for generations that are seemingly kept on every low surface imaginable in one piece. Dare I mention the terror of a “Code Brown” at somebody else’s home?

Since the holiday season is upon us, I thought I would supply all of my fellow autism parents out there a simple form letter that you can send to your relatives who don’t get why it is you may prefer to stay at home as opposed to going to a loud house crammed with extended family.

Disclaimer: To MY immediate family. Thank you for being so great. This is not about you, but meant as satire for the scores of autism families that are not as fortunate as we are to have the support system we do… so Cyndi… relax.We love you and Bianca ADORES her nina. LOL

Dear <Insert host family member name here>,

Thank you so much for the invitation to the <holiday> party! Unfortunately, we will not be able to attend. It isn't that we wouldn't like to be there, but it would be very difficult to relax because my kid(s) is/are not accustomed to your home. We have spent years figuring out how to “autism-proof” our home, something that just isn't fair to expect of others to be able to do overnight.

I know you will say that family will help watch, that it isn't a big deal and that we should not worry about it, but it is a big deal and no matter how much experience people may have watching kids that are not autistic, I can promise you that it will not be enough to understand how carefully you have to watch <insert kid(s) name here>. Little things like leaving an unlocked door to the outside unguarded for a few seconds can mean the difference between life and death.

It is too bad though, because <significant other> and I love going to your house and admiring how pristine you keep your lily white carpet. By the way, how many generations did you say those plates were in your family? They look as good as new! We particularly like to marvel at the 10 coffee tables loaded with those glass trinkets. Also, it is very comforting knowing that <insert dead relative> is right there on lower shelf of that bookcase watching over the family as we get together.

<Family member> loves all the artwork and family photos you guys have on your walls. That gorgeous wallpaper is something to behold and in some of your rooms, the walls are so white that I can’t tell where your carpet starts and where the walls begin.

What we will REALLY miss though is that lovely tomato based dish that gets served every time the family gets together and the countless number of glasses full of various colored beverages that people leave unattended… to say the least of the cutlery! How do you get knives THAT sharp? Catching up on all the gossip in the kitchen full of scalding hot pots and open flames is always a favorite of <family member>.

Will you guys have the tree up already again? All of those glass ornaments with all that meaning behind them. I can’t believe how ornate that tree can get. It is almost like just walking past it you can knock down an ornament, yet there they are… hanging on by a thread. I suppose that is why there is the mountain of neatly wrapped presents under the tree begging to be opened. It helps to keep people at a bit of a distance.

I guess we will just have to miss out on all the great parenting advice that <oldest member of the family> dishes out every year! I will never forget when he/she told <mom’s name> how all <insert kid(s) name> needed was some good discipline and that <mom’s name> should stay home more often. That is the kind of advice you just can’t pay for.

I guess we will have to wait until next year. Thank you again so much for the invitation, I guess we are just going to have a small quiet <insert holiday> celebration with kids.

Sincerely,

<Insert name here>

PS: Please say hello to <Drunk, loud, not-funny, racist relative> for us!

If you like what you have seen and read, please take a few seconds and vote for Lou's Land as one of Babble's Top Autism Spectrum Blogs. (Though I think this site is all kinds of messed up)

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

To keep up to date with everything Lou's Land, please subscribe to my blog, "Like" me on Facebook and follow me on Twitter.

How the Other 87 Live

One of my nephews (grandnephew technically) had a birthday party tonight at one of those bouncy house indoor places today. We didn't feel that it would be wise to take Bianca. Not because the cast on her foot would slow her down any, but because since it does NOT slow her down, it really serves as a dangerous weapon to anybody in her path.

I could just see Bianca jumping like crazy and coming down with her cast on some poor unsuspecting kids face. It would not be pretty.

A Break in the Routine: Part II

Did I mention that I am NOT a morning person?

The appointment with the orthopedic pediatrician was at 7AM. I fought through the fog of sleep and got up. Thank goodness I set 5 alarms on my phone… I needed all 5 of them. Bianca needed several more. She was NOT moving. I got her dressed and carried her downstairs and out the door to the man-van. I strapped her into the car seat as her sleep remained undeterred.

We got to the specialists office and of course I had to fill out paperwork. Bianca was awake now, so I had to keep one hand on her and try to fill out the forms with the other hand while being tugged in every which direction. I felt bad handing it in because it looked like a serial killer had just filled out a form, but then I remember that they read “doctor” so I figured it was OK.

The staff was incredibly pleasant. Everybody was very concerned about Bianca and they were very in touch with the fact that she is autistic. They fawned over her, complimented how pretty she was and marveled at bond between us. It really made me relax. I was already nervous about the appointment and on edge because I had no idea what was wrong with Bianca.

A Break in the Routine: Part I

Since we could not really afford a big family vacation, I decided that I would use my remaining vacation time to take off a bunch of Friday and Saturday nights. I work a 4 day work week, so this would reduce my work week down to 2 days and allow me to enjoy some time off with the family. You may not be aware, but Tuesdays, Wednesdays and Thursdays (my normal nights off) are not exactly HOPPING. So, we scheduled a bunch of outings that we normally would not do and treated my time off as a bit of a “stay-cation”.

For the first time in our 13 years together, we actually went to a bunch of adult Halloween Parties that our friends hosted. It was a nice break in the routine for a couple that works opposite schedules to reduce babysitting time and costs and share a bed with a 2 year old that refuses to sleep in his own room anymore.

Happy Birthday Bianca!

I can hardly believe that it has been 7 years since we first met. I remember it like it was yesterday. That moment remains in a three-way tie for the happiest day of my life.

You changed me in so many ways. You have taught me what it means to be a man and father, unconditional love, acceptance, patience, the danger in projecting my dreams onto others and how to avoid a head-butt.  Each day since you were born has been brighter. Even the darkest days with you in my life are brighter than the best days before you were born. You give life reason and meaning.  You have shown me my mission.

I am so proud of all you do. Every little added skill, word, sign and ability makes me marvel at your can-do spirit and your ferocity at tackling life’s challenges.

If I could have designed the “perfect daughter” before you were born, autism certainly wouldn't have been in the equation. That is why I am glad we as parents have no say in who enters our lives as children. I am glad and proud that you are OUR daughter, autism and all. I can’t imagine my life without you exactly as you are. Of course I hope that you can overcome the obstacles life has placed in your path, and I know you will do your best.

I have said it before; you are the greatest birthday gift… EVER. So as I share this 7^th birthday with you, please know that I love you for the person you are and for the person YOU want to be. I will serve as your protector, your champion and your father all along the way; never regretting that you came into my life. I hope that as you grow older I can impart on you that just because something is a challenge, doesn't mean that it isn't enjoyable, rewarding and worthy of love.

Thank you for 7 years of lessons. I look forward to a lifetime more. .. smiling, laughing and loving all the way.

If you like what you have seen and read, please take a few seconds and vote for Lou's Land as one of Babble's Top Autism Spectrum Blogs. (Though I think this site is all kinds of messed up)

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

To keep up to date with everything Lou's Land, please subscribe to my blog, "Like" me on Facebook and follow me on Twitter.

Memory Building

This is really more parenting than autism, but I thought I would share my experience and the thoughts that have come from that moment.

It is 2:30 AM and I find myself lying in bed and watching Ghostbusters... it is funny how our memory works. Every time I see this movie, I remember a really happy moment in my childhood. One that helped to shape me into the father I am today.

My One Percenter

I want YOU to make Autism an important issue in the election!

I am going to try and not get too political here. Truth be told, that is a difficult thing to do, because I tend to wear my political leanings on my sleeve.

All this talk about the secretly taped Romney fund-raiser, and his assertion that apparently 47% of the electorate is full of people that are looking for a hand-out and have feelings of self-entitlement got me to thinking.

I don’t know about 47%, but at least around 1% of the population should feel like they are entitled. They should be entitled to the therapy they need without discrimination from health insurance companies. They should be entitled to going to school free from bullying. They should be entitled to every opportunity imaginable to reach their full potential.

Autism Dads

You are involved.

You are present.

You consider 5 hours of sleep a "good night".

You are patient.

You have become immune to the stares.

You know that you can indeed give more than 100%.

You drive your child around from therapy to therapy.

You walk for your child.

You have mastered the art of remaining calm when things escalate.

You are a fighter.

You are tired.

You give your wife a shoulder to cry on.

You are a mind reader.

You know it is OK to cry.

You know showing emotions doesn’t make you less of a man, but more of one.

You advocate for your child.

You are engaged.

You go out to eat anyway… screw em!

You scour the web for information.

You hurt when your child hurts.

You are scared.

You survive on no sleep.

You somehow manage to be functional at work.

You wish you could fix it.

You accept that you can’t and love your child unconditionally.

You try desperately to communicate with your child.

You change your priorities.

You raise awareness.

You smile.

You are a master at body language.

You are deaf to the whispers.

You shake your head at the injustice of the health insurance companies.

You have been hit, bitten, scratched, and pinched all in the matter of minutes.

You celebrate every milestone like you just won the World Series.

You honor your vows

You educate.

You laugh.

You have perspective.

You cope.

You have your entire belief structure come into question.

You ask, “Why me?”

You ask, “Why not me?”

You know the greatest gifts you can give a child are not presents, but presence.

You want things to be better, but don’t know if you would change a thing.

You love your child so much that you could burst.

You redefine the word “Dad”.

You are everything a man should aspire to be.

You are the father to a child with autism.

You are a hero.

If you are an autism dad and are struggling to find answers, I would like to suggest a few good places to go where you can read about the trials and tribulations as well as thoughts and ideas of other dads with kids on the spectrum. These are just a few that come to mind of the top of my head, if you know of others, please post them in the comments below.

Happy Father’s Day boys!

Ancora Impartial
Autism Daddy

Autism Light
Bacon and Juice Boxes
Both Hands and a Flashlight
Fathers for Autism
Find My Eyes
Gingerheaddad
Happy Trouble
Jason Hague

Joel on Autisable
Just a Lil Blog

Lost and Tired
Pancakes Gone Awry
Pucks and Puzzle Pieces

Run Luau Run

Stuart Duncan

If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.

To keep up to date with everying in Lou's Land, please subscribe to my blog. "Like" Lou's Land on Facebook and follow Lou's Land on Twitter

A Happy Anniversary

One year ago today, I transferred a number of Facebook notes that I had written about my family’s experience with autism to Blogger and started Lou’s Land. I didn’t really put a lot of thought into it. I didn’t think anybody cared what I had to say and only did it after being bugged by several friends to make my experiences public.

What I discovered was that not only did people seem to relate to my writing; I could entirely relate to the feedback that I got in return. People shared their life, their stories, their intimate fears, their joys and triumphs all of which helped to make me understand that we were not alone in our journey. Where one on one therapy had failed, the online autism community had healed me. When you are scared of what lies ahead and are searching for answers, it helps to find people that have been where you are and can show you where you are going.

Walk Now

To better understand somebody, don’t just walk a mile in their shoes… walk three miles by their side.

This was the conclusion I drew last year after participating in my first Walk Now for Autism Speaks event in Chicago. The event moved me so greatly and the people touched me so deeply that it literally changed my life forever.

Autism was no longer a deserted island. There were people out there that lived it and breathed it every day just like I did. There were families that looked just like mine walking the path down Chicago’s beautiful lakefront. Their struggles were our struggles. Autism was not the isolating sentence I thought my family had received, it was quite the opposite.

My Better Half

 

Bianca enters the world!

There is nothing sexier than the mother of your children.

Not from where I stand anyway. When I see my wife interact with our kids, I am more attracted to her than at any moment throughout the day. It is love. Watching your partner creating a memory with a being that is equal part you and her is magical. Those moments last forever in the minds of kids. I know because at the age of 40 every time I walk along Chicago’s lakefront I am 4 years old again and riding on the back of my mother’s bike in a bright orange seat. It is like it was yesterday.

 

I don’t write about my wife specifically very often. She is in my writing; she is around, but rarely the focus. I get asked why. I get asked why A LOT. “Where was your wife?” one email asks. “Are you separated?” inquires another. ”Are you guys OK?” worried one reader. The reason I don’t write many specific things about my relationship is because I am not certain how much of my wife’s life she wants shared. The blog and the videos are my thing… not hers. She is incredibly supportive of my efforts. She is proud. You can probably find a comment or two of hers on various things I have done, but she is content to be behind the scenes. She isn’t jealous of the attention I have gotten for my efforts, the only jealousy she has (she jokes) is of my relationship with Bianca because she is clearly a “Daddy’s Girl” in every way, shape and form.



Sofie comes a year and 22 days later!

I am going to break away from my usual rule for the day, because it is HER day. She actually gets two days. May 10^th is Mexican Mother’s Day and then she gets the second Sunday of May too. She deserves a lot more Mother’s Days than that.

The Conversation: Part 1

(Just a quick note… the conversation is paraphrased and not verbatim.)

It had to happen someday. I was hoping that it would be much later on, but I suppose we were just postponing the inevitable. We have to do this all over in a few years anyway, so I guess we might as well get on with it and hope for the best.

I have thought about it many times. I have had the conversation in my head more times than I can count. I planned well in advance because I knew at some point in her young life, Sofie was going to have to understand why Bianca is the way she is, she was going to have questions and it was only a matter of time before they came up and we had to explain autism.

The Tragic Case of Stephon Watts

Of the posts I have written, this has been the toughest. I purposefully delayed publishing my thoughts on this subject publicly because it was very difficult for me to write about this story without becoming incredibly angry. My anger is primarily focused on two things. I hoped that with time the anger would subside and I could write without my judgment and opinion being clouded. I do not know that I have been entirely successful, but here it is… the tragic case of Stephon Watts.

Photo from JUSTICE FOR STEPHON WATTS!!! Facebook page.

Dear Bianca...

In honor of Autism Sunday, a letter to my daughter:

Dear Bianca,

Do you know how perfect you are?

Your smile can melt the coldest of hearts. Your laugh fills the air with so much joy that one can’t help but share in your happiness. Your hugs tell me that not only do you love me, but you appreciate me.

Each day you surprise us. Your intelligence is so impressive. You communicate so much by saying so little. Your deep, brown eyes talk for you. They let whomever it is that you need to communicate with know what they need to know… unless you feel like talking. When you do decide to use your incredible vocabulary, I light up. I know how much you are trying. I know how badly you wish you could communicate verbally without such a struggle. I see that in your eyes too. Especially when they tell me you want more juice, a chocolate chip cookie, that you want to hog the television, or that you want to eat yet ANOTHER cucumber.

There are times that I find myself just staring at you and marveling at how pretty you are. Everybody says that you and your brother look just like me, but when I look at you I see your mother’s beauty shining through. We struggled for so long to have a family that when it finally came to be, your mother and I were ecstatic. I would not for ONE SECOND of my life ever regret having you. Autism be damned, you are my daughter. You are my light. I could not love you any more if you did not have autism and I certainly would never think to love you any less.

You have taught me so much in these six years. Because of you, I am now a fully realized man. Where once stood a sarcastic, narcissistic boy stands a man humbled and full of compassion. I know what I am supposed to do. I know who I am supposed to help. I thank you for helping me to understand what is important in life and what my priorities should be.

There is still a long road ahead of us. I couldn’t ask for a better travel companion.

I love you Bianca. Thank you.

Dad

If you have not already, please take time to watch my videos, "Fixing" Autism and 

Autism Awareness with Nichole337 and share them with your friends.

To keep up to date with everying in Lou's Land, please subscribe to my blog. 

"Like" Lou's Land on Facebook and follow Lou's Land on Twitter

Dad vs. Man

"Sometimes the poorest man leaves his children the richest inheritance." - Ruth E. Renkel

Being a dad doesn't mean you can’t be a man. When you have a child with special needs, they need their dads to be as involved as possible. Being a dad makes you a BETTER man.

Some men feel that the two are mutually exclusive. Scratch that. Some women feel that way too, so I guess it is some PEOPLE feel that being a dad means you can’t be a man.

Why do I say this? I say this because to me it is almost like there is an opinion out there that a guy has to turn in his “Man Card” in order to be fully vested in their kids. By that I mean that they take part in and are an active participant in ALL of the day to day routines of their kid’s lives that their schedule allows.

It is a disturbing phenomenon that I see firsthand almost every day. In the vast majority of events, therapies and functions that I attend, I am one of the only guys if not the only man in the room. At first I chalked it up to my unusual work schedule; my days off are in the middle of the week which allow me to be really active in Bianca’s week. But I work nights when I do work, so I am able to participate in weekend activities as well… and again, I am in the minority by a LONG shot.

The Holiday Spectrum

“Traditionalists are pessimists about the future and optimists about the past”

-          Lewis Mumford

Christmas. It conjures up different meanings for different people; some religious, others more secular. Anymore, I just think of crazy people killing each other in stores over really inconsequential material items.

What Christmas almost always means for everybody is tradition. Each year people make a habit of decorating their house the day after Thanksgiving, some families trek to a certain relative’s house that always seems to hold court on Christmas, some families have gift giving traditions. The process of decorating the home is a tradition for most. They break out all the Christmas related trinkets that they have collected throughout the years, most with sentimental value. Ornaments on the tree are usually special for people as well. They were either given by a family member, or maybe they denote a special event in the life of your family… like a birth… or in our case three births. There are midnight church services that families go to in a celebration of their faith. Maybe you are one of the people that have developed a new tradition and pitch a tent for Black Friday specials outside of a store? If so, take some milk with you to pour into your eyes if you go to Wal-Mart,


We take these rituals for granted. When Christmas comes, we execute these traditions as if we are on auto-pilot. We do them, because that is what we have ALWAYS done. To do anything different would seem foreign. They are almost like a reassurance for us that we have survived another year.

A Little Perspective Folks

“Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections.” - Unknown

Somehow I volunteered to be a Room Parent for Bianca’s school. I am not sure how I ended up volunteering. I got a call out of the blue saying that I had signed a form indicating thatI was interested. I have no recollection of signing the form at all. The only thing I can figure is that after another sleepless night, I blindly signed the form while in a walking coma.

 It isn’t a huge responsibility, and I was glad to be able to help. I volunteer to help in recess once a week and I love all the kids in the class and would do anything for them. Being a Room Parent basically requires that you plan a couple of parties: Halloween and Christmas. Pretty easy stuff, but when you have three kids (one with special needs) and work full-time, and work an opposite schedule of your spouse… time can be hard to come by. I missed planning the Halloween party because my dad broke his hip during the planning week and I went to be with him and support my mom. So I am trying to do a lot more for Christmas to make up for not being so involved last time around.