Guess what?

One of the things that I truly appreciate about Bianca is the level of our communication. I understand her like no other person. I know what she means when she furrows a brow just so, squeals a certain way or pulls my hand in a certain direction… and of course when she just plain asks for stuff.

 Her speech is coming along pretty well. More and more she asks for specific things or uses words to describe her environment. Just the other night while at a party she told me “Back home” when she clearly had enough of the environment and all that was going on. That certainly makes things easier and has led to a lot less meltdowns over time, but despite all the advancements her level of communication is still quite different and definitely well behind that of a NT 7 year old.

I don’t know why this particular thing I am about to share is such a source of pride and joy for me. It seems so incredibly silly… ridiculous really. But maybe that is exactly the reason why. It is just fun.

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.

Lighting It Up Blue

April is Autism Awareness Month and April 2^nd is World Autism Awareness Day as declared by the UN General Assembly. It is also the day that Autism Speaks asks for residences, businesses and buildings to change their exterior light bulbs from white to blue in an effort to kick off Autism Awareness Month and raise awareness via a promotion called Light It Up Blue.

Before we are even there I have already read my fair share of posts and comments criticizing the event. I have seen attacks on everything from the event actually doing nothing to help autistic people, to wondering just who it was that chose blue to represent the autism community in the first place.

If you are relatively new to the autism community… get used to it. It seems that no organization or individual can do much of anything without somebody thinking they are going about it all wrong. Stay positive though. Just go with what you feel like is the best way to honor your autistic loved one or if you are autistic, whatever makes you feel proud. For my family, we enjoy participating in Light It Up Blue.

Hard Headed - Blogging Advent Calendar Day 20

Sometimes you just aren’t fast enough.

When Bianca wakes up in the middle of the night, she tends to get upset and meltdown. Who doesn’t?

Unfortunately for us though, it means she has to find a way to release the pent up energy that comes from not being able to communicate exactly what it is that is upsetting her. She will cry, kick, flail and punch… but most often her frustration manifests itself in head-butting. So when we hear Bianca get REALLY upset, we run into her room to soothe her.

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.

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

That Awkward Moment When... - 2012 Blogging Advent Calendar Day 11

That awkward moment when a stranger starts talking to your non-conversational autistic child, and waits for a reply.

It happens a lot with us. We will be at Target or the grocery store and inevitably a little old lady will see Bianca and want to compliment her. Bianca is a really pretty little girl… big eyes, long hair and an incredible smile. Her looks betray her more severe autistic traits in the eyes of a stranger. They just see a pretty little girl who is smiley and singing. Her looks also work against her when she is melting down as well because she looks like a 7 year old that has parents that do not know how to control their child.

So what do we do when that moment comes in which the well-intended stranger comes up and asks Bianca her name, or how old she is only to get what they perceive to be the cold shoulder? Added to the mix is the fact that we are Latino. I could pass for a whole myriad of ethnicities, but my wife is pretty clearly Mexican. So then the nice person starts to speak slower and LOUDER. I think it is because they may suspect Bianca doesn’t speak English, but it could also be that they think she is deaf. 

Autism Beatnik - 2012 Blogging Advent Calendar Day 10

Let me set the mood if I may... I would like to take you to the Beat Generation of the 50's and 60's. We are in a dimly lit cafe and I am stepping up to the mic weighing 80 lbs less and with my goatee still completely black.

I strain to look at my note-cards through my dark glasses, bongos between my legs and a steaming hot cup of coffee (in this fantasy I like coffee) next to me. We are in San Francisco and the vibe is right.

I play a riff on my bongos as you, the audience, start snapping your fingers... Jack Kerouac eat your heart out...

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.

The Chair Necessities - 2012 Blogging Advent Calendar Day 6

It seems that I am always in some sort of war with our health insurance company. As always, I will not name which insurance company we have, I will just refer to it as Azure Cross Azure Shield or ACAS for short.

So as I have referred to many times in my posts, Bianca is an eloper. It has gotten better, but when the mood strikes… FORGET ABOUT IT. That kid is gone. Vapor. “Asses and Elbows” as we used to say back in the day. With age comes height and with height comes longer legs and with those longer legs comes a larger stride. Now you wouldn't guess it by looking at me or my wife, but we aren't really runners. So now at the age of 7, catching Bianca is requiring the understanding of pursuit angles like an NFL Safety.

Cardboard Box Time Machine - 2012 Blogging Advent Calendar

Looking through my garage, I found several large cardboard boxes. I thought I might put them to good use by making something creative out of them. Back when I was a kid a cardboard box was whatever the imagination could conjure.

 

If I could make a cardboard box into one thing, I think that I would create a time machine. Sure it would be tempting to go back in time and play the winning numbers of that obscenely large Powerball jackpot. I could warn Abraham Lincoln to skip the theater. I could even go back and not select Jamaal Charles with my first round pick of the 2011 fantasy draft.

But if I could go back in time to any point I wanted. I think I would go back to when we first suspected that Bianca was autistic and settle myself down.

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:

So Long Good Friend - 2012 Blogging Advent Calendar Day 2

“It’s inevitable when you buy a pet. You’re supposed to know it in the pet shop: it’s going to end badly. You’re purchasing a small tragedy.” - George Carlin

It is a sad day at the Melgarejo household. While sleeping on the love-seat (where she is not supposed to be) our dog Sadie fell to the ground crying and clearly in distress. She knocked into furniture, knocked over speakers and toys and was hitting her head really hard on the floor and wall until she crumpled up in a twisted heap by the front door. Sofie and Bianca were in the living room too. Bianca was in an opposite corner pretend playing with her Backyardigans, but Sofie was watching TV and saw the whole thing. I told her to go upstairs while I called for my wife for help.

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.

Simple Words (Guest Blog)

The other night as I was laying in bed my R2D2 message indicator went off telling me I had an email... yes I am that big of a nerd. When I checked the email I found a message from a fellow autism dad, board member and friend who was clearly hurt and angry. His son was upset, his wife was upset and being the caliber of man that Dan is... he was upset as well.

He needed to vent. So as I had done long ago he turned to writing. He let it all out and worked through anger. Then he did the most important part... he shared it.