What's Old is New Again

"Success is stumbling from failure to failure with no loss of enthusiasm." - Winston Churchill

With Bianca at 13 months. Before she regressed.

When Bianca was 12-13 months old (before her regression) she was ahead of the curve on a lot of things. One of those things was labeling.

One of my favorite things to do with Bianca when she was a baby was to grab one of her favorite picture books and flip the pages as she pointed to and told me the names of ALL of the animals. It also became one of the things that made me angriest about the regression… that it took that from us. Bianca became more content chewing on a book than she was labeling once her regression started to kick in.

I would grab her favorite book and sit down with her and witness the gradual decay in her ability and/or interest in labeling. She lost the words altogether eventually. Asking her to participate in an activity became futile. She was much more content to be on her own and to become engrossed in trying to find any microscopic crumb on the floor to mouth. It would depress the hell out of me.

Still, you move on.

Bear, Duck, Frog

As anybody that follows regularly knows, the potty is Bianca's muse.

Yet again while sitting on the potty, she surprised me.

She has a host of stuffed animals that I refer to as "the guys" but she has lately been referring to as "my babies". On a trip to the ER a while back for an infected finger, she brought them along for support and we passed the time labeling them.

Sitting on the potty today she started to name three that we left behind in the living room so that she could sit on the potty.

"Bear" said Bianca, “Duck. Frog.”

“Yes.” I replied, “The guys are downstairs. You can play with them once we are done on the potty.”

“Bear” Bianca repeated with a smile. She then grabbed my hands and forced them to cross. “Bear”

Huh?

“You want a bear hug Binks?” I asked.

Fireflies - Blogging Advent Calendar Day 19

For Day 19 of the Blogging Advent Calendar I wanted to share this with you…

There is a lot of ugliness going around in regard to autism since the Newtown, CT shooting. I think we could all use this and the message it carries.

I hope you enjoy "Fireflies" by the Jubilee Project.

Name Dropper - 2012 Blogging Advent Calendar Day 12

There are good days… and then there are GREAT days.

Yesterday was a GREAT day. It didn't start out that way either. The “day” actually started with me getting home to find Bianca restless and not wanting to stay in bed. So we went down to the living room and Bianca partied like a rock star until… 5 a.m. before she finally cuddled up to me and passed out.

It was my wife’s day to wake up with the kids and she told me that Bianca was none too happy about getting up for school after having been asleep for a whole 2 hours. I worried about her being super cranky and lethargic at school, but when I picked her up at the school to take her to therapy, I was told she had a good day.

We went to speech therapy and I got concerned because while we were in the waiting area she started to melt down. Nothing happened that I was aware of; she just got upset, clinched her teeth and charged at me. Then she started to cry and tried to head-butt the chair and me. I figured that the fatigue must have been kicking in. As the therapist walked off with her, I warned her to have her guard up.

When Bianca returned, the therapist said she had a great session until it was time to transition to leave. She was having a good time, and I know Bianca LOVES her therapists so it was not too surprising that she wasn't in the mood to leave. She rarely is. At least she didn't get upset about not going to swim therapy.

We got home and we only had a couple of hours to play because Sofie had her Christmas program at school. So we got snacks, went potty and played around for a while. Bianca was showing no signs of a kid that had only slept for 2 hours the night before. Daddy was dragging though.

So I hopped on the computer to check some email and social media. Bianca came up to me and got between me and the table and started to hug me, so I went to the Word document I had open, and hit enter until I got to a new page, and made the font size really big. I then looked at Bianca and asked, “Bianca. Can you spell your name for me?”… nothing. We have worked on it some. If I ask Bianca to type a letter, she will do it 9 out of 10 times. This time though, I was asking her to recognize the request, and then spell out her name… without my assistance.

I asked her again, “Bianca. Can you spell your name for me please?”

She looked down at the keyboard, and then while saying the letters… proceeded to type her name!! BY HERSELF!!

I was stunned. I didn't know what to do. I heaped a ton of praise on her but I didn't want to freak her out. I clicked over to my Facebook page that was still open and just typed, "YES YES YES!!!!!"

I had to document this… the video camera was in the basement, so I grabbed my phone, started to record, and just HOPED that Bianca could repeat what she just did.

Sure enough…

The REALLY amazing thing to me was that she even typed “MnM” for “M&M’s”!! Sure she fat fingered a few keys and she held on to the letters too long, but she was SPELLING HER NAME!!! By herself. Not hand over hand… by herself!

Progress people… hope… faith… the layers are being peeled. I just can't wait to see what they reveal.

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.

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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.

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.

The Mall




Outside of torturing our kids by making them see Santa every year, the mall has been a place our family has avoided over the past couple of years. Once our son was added to the mix, it became impossible for one parent to control all three kids and just not worth the tension it would cause between my wife and I if we all attempted to go.

We tried visiting the mall using several different configurations: Luis and Bianca in a dual stroller and Sofie walking, umbrella stroller/dual stroller combo, dual stroller/backpack with a leash, two umbrella strollers, renting one of those car strollers from the mall information booth… you name it. No matter the combo, it was always a nightmare.

M&M’s (Miraculous and Motivating)

With motivation, people can accomplish amazing things. They can lose weight, run a marathon, learn new skills, climb mountains or throw themselves out of planes. Most people find motivation on their own and without the help of others, sometimes they need a gentle push. People get inspired and use that to their advantage to do things that they might not otherwise attempt to do.

For kids on the spectrum, motivators are often found by the parents. They vary as greatly as the individuals on the spectrum themselves. Some have a favorite toy, others a reward system like stickers. Some get rewarded with food like McDonald’s fries or a favorite fruit.

Giving Thanks

Ah… Thanksgiving; the day where most Americans will begrudgingly trek to some relative’s house that they really don’t want to be at, stuff themselves just short of exploding, watch football and if we are lucky… take one second out of their jam-packed day of gluttony and selfishness to be thankful for something… anything.

Most Turkey Days, I am ashamed to admit, I could qualify for all of the above. This year though… life is different. The veil of self-pity, selfishness, depression has been lifted… and boy am I THANKFUL!

I am thankful for my family. My folks are still around and my dad seems to be recovering nicely from his broken hip. My marriage has managed to survive another stress-filled year. My kids are happy and healthy. My father-in-law is still raising havoc at the age of 90! Things at work are going well too, I have a career doing something that I LOVE doing and have not felt like I have ever had to go to a “job”.

Usually that would round out the list. But 2011 has been different. The list is a lot longer, and it is time that some people got some praise and thanks.

Greatest Birthday Gift... EVER.

Since I can remember, I wanted to be a dad.

Most kids could tell you they wanted to be a baseball player, a veterinarian, a ballerina, a fire fighter or some other career goal. I had those too. Mainly stand-up comedian, SNL actor or radio personality were the things I wanted to do more than anything. Somehow I landed in TV, and I feel fortunate enough to never feel like I go to a “JOB”. However, professional aspirations aside, more than anything in life… I wanted to be a dad.

That opportunity finally happened on November 3^rd, 2005. Born exactly on her due date, my beautiful Bianca came into the world… on my 34^th birthday. When asked, “What was the greatest birthday present you have ever received?” most people have to think about it a little. Not me. Not only was Bianca the greatest gift I have ever received in my life, she continues to give and enrich it by teaching me to be a better man, husband and father every day we spend together.

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.

A Father's Day Celebration: Members Only

For this post, I would like to pay tribute and thank all the fathers out there that love their autistic children unconditionally. This is for the dads that have what it takes to be a real man and stand by your family and take your vows seriously. This is for the dads that don’t run from their child being different, and for those that may just now be coming to the realization that they are entering a club that they had no plans on joining.

For many in a marriage, an autism diagnosis can be placed in the “worse” column of “for better or for worse”, but with patience and communication you can survive. Don’t bottle up your fears. Tell your wife, your friends, or share them with others in a blog and you will free yourself of the many burdens you are trying to shoulder and find strength in numbers.

You know that you are the father of an autistic child when:

•  You know exactly what your child is saying even though she has never said it… EVER.
• You go to visit your friends who have children and they apologize for how their kids are behaving, yet you never even noticed.
• You have ever worn more of your child’s food then he has eaten, and he is 6.
• You have ever tried “stimming” just to see what it is all about.
• Using just your peripheral vision, you can snag crayons from your child’s hand before they go in the mouth.
• You are on a plane with a crying child... and don't even notice.
• You see a kid being a complete terror at the grocery store and you do not judge.
• You have been punched in the face by your child and instead of getting angry, you laugh it off.
• Your child saying, “I love you” even if by echolalia makes you feel like you are the king of the world.
• You have eaten a family dinner in the dark on several occasions.
• You have shared belly laughs with a child that you have no reason as to why they are laughing.
• You have been given every crackpot theory about what causes autism and what will make your child better, and have kept yourself from going insane.
• Your child has taught you greater patience, understanding, empathy & compassion than you ever thought possible.

Got any more out there? Go ahead and lay them on me! 

Join in the fun and let’s celebrate! You guys deserve it! 

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

Scenes from an Italian Restaurant

“Could a greater miracle take place than for us to look through each other's eyes for an instant?”
- Henry David Thoreau

An interesting thing happened to my family today. We decided to get a quick bite to eat before Sofie’s dance class so we stopped off at a pizza buffet. We sat at a high-top table near the buffet which we had never really done with the kids before. It actually worked out pretty well because Bianca didn’t have such an easy time getting up and running around. The only real loser in the deal was Luis because the baby carrier was about a foot below the table.

I went for my first pass at the buffet and to grab a slice of pepperoni for Bianca. Pepperoni is her favorite. Not the pizza… just the pepperoni. She will rip it off and eat them one by one. I have even bought her pepperoni for the house and put it in her salads. They are always the first to go.

Elsa and I got involved in a conversation as Sofie ate nothing but oyster crackers and Bianca polished off the cheese and crust of her now pepperoni-less pizza while rocking left and right in her chair. People passed by with their plates full of salad, pizza, mashed potatoes, hot wings and pierogi as we wolfed down our food trying to make certain that we made dance class in time.

Just then, out of the corner of my eye I saw Bianca reach out and grab something from a lady’s plate as she walked past us from the buffet table. Elsa and I both started to apologize profusely.

When something like this happens, it is incredibly stressful. Anybody with a child that has Autism Spectrum Disorder knows… people can be cruel and display an amazing lack of understanding. Sometimes not intentionally, but to say it happens OFTEN is putting it lightly. Many autistic children appear normal on the outside. When they act up or start to have sensory issues, it is easy for an outsider to dismiss the situation as a parent that can’t control their child or somebody that has a bratty kid.

“I am so sorry.” Elsa said, “Our daughter is Autistic.” We have learned from experience to throw this out there as soon as possible so that people understand the situation at hand.

But unlike anybody else that we have ever encountered, this lady stood there with a smile on her face. She held her plate out to Bianca and asked her what it was that she wanted. Bianca grabbed the tomato and shoved it in her mouth with a smile. Mind you, this is a complete stranger’s child pawing at her plate with their bare, grubby hands… and she smiled.


“Oh it is OK.” Said the lady softly, “My oldest has Asperger’s. He is very high functioning, but has a tendency to say not very nice things at inappropriate times. He is 21 years old now.”

The lady gave Bianca a loving pat on the head and said goodbye.

My heart melted. Elsa was moved to tears. The woman never even threw the plate out, or went back and got another salad. She shared, and she did so willingly and happily. This woman displayed kindness and understanding on a level that is beyond comprehension for most… unless you have been there.

The experience has stuck with me all day. I can’t stop thinking about it. Why did the kind blonde lady with her starter salad react the way she did? It is understandable if she was nice and kind AFTER we told her about our daughter’s condition. But she was warm and loving from the start.

Empathy. It was pure, genuine, real… empathy. It was the ultimate example of having walked a mile in our shoes.

The world needs to discover a whole lot more empathy. It appears to be in short supply. Take a moment today to try to see something from another’s point of view. It can only make you wiser and more understanding. Then maybe someday you will find yourself in a position to shock a stranger with kindness and understanding too.

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