My Dream

Last year I attended the Annual Law Summit presented by Autism Speaks. It was my first time in the nation’s capital. There was one place I knew I had to go while I was there... the Lincoln Memorial.

Not only did I want to go because of what Lincoln had accomplished or because of his ties to my home state. I wanted to stand in the place where the greatest speech on equality was ever given. Not just to honor the work and legacy of Dr. King but to invigorate my own personal battle for equality within our healthcare system and to end clear discrimination that autistic people face when it comes to health insurance coverage. 

It Comes in Waves - 2012 Blogging Advent Calendar Day 9

We work so hard. We see so many improvements in some areas, while others seem to be in a holding pattern. Then there are the times we worry that she is regressing.

Bianca goes through cycles. We notice that she will have a flood of breakthroughs for a period of 3-4 months and then it is followed by some kind of regression. It is almost like a wave crashing onto the shore. The wave advances and beats down on the sand that is in its way and then retreats. But as the wave returns to the ocean it carries some of the sand with it and slowly over time erodes the beach.

Upon Further Review - 2012 Blogging Advent Calendar Day 8

“There is no planet, sun, or star could hold you if you but knew what you are.”

– Ralph Waldo Emerson

I think it is time to do something… Time for a re-evaluation of Bianca’s IEP.

I am NOT looking forward to it.

Until this year, Bianca had always struggled with returning to school. After a few weeks though, she would get adjusted to her routine and settle in. This year, has been tougher for her.

I don’t know if it is the longer school day (she now goes all day as a first grader) or that her classroom got changed and moved to a smaller room, maybe it is just her. At any rate, she is not where we would like her to be at school. She is making some progress, but she is also constantly out of her seat, escaping from the classroom, mouthing stuff before the paras and teachers can get to her and head-butting the staff on a daily basis. Every morning as Bianca leaves, my wife and I place a bet on who gets head-butted and where.

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.

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.

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.

Nataly's Letter

In the wake of Ann Coulter’s unapologetic use of the “R-word” I wanted to share a beautiful letter written by Bianca’s friend Nataly.

Nataly is one of the helpers in Bianca’s dance class. She is an incredibly happy, warm, loving, fun young lady… who just also happens to have Down Syndrome. If you knew Nataly, you would understand that her disability is the least remarkable thing about her.

Here is what Nataly wrote on the Voces de Familia de Indiana Facebook Page, a page that was just started by a few Latino special needs parents in Indiana. First is the original in Spanish, and then I have it translated in English.

Thank you Nataly for being a great role model for ALL kids. You are an inspiration and our family is lucky to know you.

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.

50 Cent: Apology Accepted

@50Cent has now apologized for the offending tweets that he made regarding autism and special needs children. I think it is our responsibility as those that criticized his comments to work just as diligently to let people know that he has apologized. Too often in these situations, it is the bad that gets spread around like wildfire and the apology gets none of the attention.

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.

STUPID Studies

Pregnancy Linked to Birth of Autistic Children

(Somewhere, USA) – A revealing new study today released from the Science Tribunal of the Uterine Pregnancy Investigation Department indicates that there are direct ties between women that have become pregnant and the birth of children that later become diagnosed with Autism Spectrum Disorder (ASD).

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.

Trick AND Treat

Yet another year of little ones dressed like everything from scary to funny, superhero to anti-hero, dead to undead and then the ones that you don’t know how to classify.

Bianca had a class Halloween Party, so my wife and I went to take pictures, help out and meet other parents of the kids in the room. I have gotten to know the kids pretty well since I volunteer to help with recess once a week, but I am not that familiar with the other moms and dads. The kids seemed to enjoy their pumpkin decorating and nachos. The cookie decorating was a particular favorite of Bianca because she got to eat a cookie, and because she inhaled every possible candy sprinkle she could find.

Flying High

When I think back to when I was a kid, there are moments that I can recall that take me right back to that time and place in which I was truly free. Free of responsibility, free of stress, free of worry… I suppose it is called innocence. One of those moments is riding on the back of my mom’s bike along the Chicago lakefront. We moved from Chicago when I was 8 but when I returned as a young man and would ride my bike or rollerblade along the lake it would take me back… every time.

Have you hopped on a swing lately? Try it. Don’t be afraid of what others are thinking or saying. Just go to a park one day, hop on a swing and fly. I guarantee your senses will take over. It is truly remarkable. I believe that it is the closest to a time machine man will ever get. The breeze in your face, the squeak of the chain, that little jolt that happens when you test the boundaries and soar too high… all of these things can’t help but take you back. You had the phase on the swing where you always wanted your parents to push you because it made you feel safe and secure. You knew they would be right there to catch you if you ever fell. You didn’t even have to kick to keep your momentum going. Your parents did it all for you.

Eventually however, you reached a point in which you didn’t want your parent’s assistance. You wanted to be independent. You hopped on all by yourself; you pushed yourself back and then threw your legs forward. You learned how to maintain control and what your limits were. Your parents, though willing to give you that push, were now no longer a necessity. It was still nice to know that they were there for you, but their mingling in your affairs was no longer vital to the cause.

The Girl of a Million Words

We talk to each other all the time. We didn't use to. Things were not always so easy between us. I suppose that is usually the case in any typical father/daughter relationship. She feels like nobody gets her, and he feels like he is not an important enough figure in her life whose words get ignored. It just took a little while for me to understand her language and speak to her at a level in which she could comprehend what I was asking of her.