Twas the night.. Blogging Advent Calendar Day 24

Christmas Eve… the big day for us.

We put the tree up and decorate on Christmas Eve, then spend the evening with our family at one of my brother-in-laws house. The kids usually fall asleep in the car on the way back home, so after we carry them off to bed “Santa” finishes any last minute gift wrapping and takes all of the presents out of hiding and places them under the tree.

The highlight for me is usually playing Santa at the family gathering. I started doing it the Christmas after Bianca was born. She is a November baby, so when her first Christmas came around she was only like 6 weeks old and so was her little cousin. Playing Santa allowed for both of them to get a picture with the jolly elf for their first Christmas. They family has expanded at an incredible rate and 7 years later, there are now 13 kids ages 7 and under so Santa is now a big hit. The adults in the family like it as well because Santa works a little “blue”.

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.

Hospital-ity - Blogging Advent Calendar Day 18

There is nothing fun about having to take a kid to the ER. Add autism to the mix and that makes it all that much less funner.

We had to take Bianca to the ER… again. Last time it was a broken foot, this time it was a REALLY infected finger. I just hate it. Nothing makes me feel worse than having to hold Bianca down while she is freaking out as doctors and nurses do stuff to her.

Yuck. It was bigger by the time we got to the ER.

Kudos to the ER staff who fast-tracked Bianca because they were sensitive to her autism and didn’t want her to be in a place that she was not comfortable.

It goes against everything in my makeup. I spend the vast majority of my time with Bianca working towards avoiding meltdowns. There is no option in the ER though. She is going to meltdown. She is going to get upset. She is going to hate me. I just hope that she forgives me.

Who Turned Out the Lights? - 2012 Blogging Advent Calendar Day 17

Breaking away from Newtown, CT posts and marveling at my son's appreciation for a top that we have now spun 1000 times without complaint from dad because I have never been so happy to do something so mundane with my child...

I am not sure if it is part of Bianca’s autistic makeup or perhaps some sort of OCD, but for some reason Bianca has really been into turning the lights off lately.

There have always been some lights in the house that upset her if they are on. The kitchen light is the most obvious and difficult one to address. Do any of you have to cook in the dark? It is easy to microwave in the dark, and that is the extent of my cooking prowess, but for my wife who likes to cook up our favorite Mexican dishes… it is difficult.

It doesn’t appear to be a sensory issue because she doesn’t mind certain lights on. It is just that others being on upset her. I have tried making her turn them on, keeping them on all day, seeing if she wanted sunglasses… nothing seems to help, except turning the light off. She has no trouble with the lights on at school or at a mall or store, but in the house… some lights really bug her.

Dinner at Rancho Melgarejo ;-)

We have eaten in the dark for the better part of 4 years now. The dining room light is another light that bothers Bianca a lot. It makes things interesting to say the least. Once Bianca is asleep, we are so used to being in the dark that we often forget to turn lights back on.

What is funny though is when Bianca gets ready for bed and goes upstairs. She turns on the light in the hallway so she doesn’t trip and then she turns the light on in her room and goes and lays down in her bed waiting for me to kiss her goodnight and turn the light out.

I am thinking about modernizing our living room (where we spend the vast majority of our time as it is baby-gated off from the rest of the house) and putting in remotely controlled recessed lights and a password protected digital thermostat along with a hardwood or laminate floor. It may be the only way. I love making things comfortable for her, but at the same time there is only so much of our lives we can live in the dark.

The problem is that since I am not 100% sure what the root behind the obsession is that whatever we do could just upset Bianca more and that is the last thing I want to do.

Anybody else struggle with this? Maybe it isn’t lights, it is something else? I would love to hear your stories and what approaches you have taken.

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.

What a Croc - 2012 Blogging Advent Calendar Day 13

Meltdowns can happen for a variety of reasons. Unless you really know the kid and his or her autistic traits it is hard to get to the root of the issue.

I know Bianca fairly well. She is a daddy’s girl and I spend tons of time with her. We work on her gaining skills, we play, and we just sit and enjoy each other’s company. I know her like the back of my hand. I can predict reactions and meltdowns just from our wealth of time together.

Bianca, much like George Costanza must feel “no encumbrances” when she goes to the bathroom… the pants come off, shirt comes off and shoes and socks are coming off as well.  So after she finished her business, I took her into the bedroom to throw her clothes back on. Her diaper, shirt and pants went on without a hitch. I reached for her Crocs and placed them on her feet and Bianca went ballistic. I have never seen anything like it. She started crying, started banging her head into the bed and was flailing her feet. I stood back, not knowing what exactly to do.

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.

Potty Mouth - 2012 Blogging Advent Calendar Day 7

I wonder how many great inventions, plays, songs and ideas have come to people while on the toilet.

It has to be pretty staggering right? I think we get inspired because if all is going well, we usually don’t have much going on. We are in there killing time. Waiting for something to happen and staring at the walls. So the mind wanders. Maybe you fantasize about being wealthy, or hitting the big shot in a game. If you are a parent to a crazy house full of three kids… maybe you just lock the door and hope for a little bit of peace and serenity.

For the most part, we look forward to going to the bathroom. Bianca is starting to get to that point. Potty training is starting to come around. A lot of my friends that have kids on the spectrum have told me that 7 is the magic age for a lot of them. I dunno about that. Time will tell. But my wife and I can’t wait for the day that Bianca is fully potty trained and “Code Brown” or “Poo-caso” are no longer terms being used in our house. We believe that day will come at some point.

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:

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.

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.

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.