A Cut Above the Rest

Today I paid $20 for a $10 haircut... and couldn't be happier.

I took Bianca to get her haircut today, and as soon as we walked into the place, she started to melt down. I sat her in my lap to try and keep her calm but she wanted none of it. She was flailing about, grinding her teeth, trying to head-butt me and kicking all over… and the stylist had yet to even touch her.

As Bianca weeps uncontrollably I wonder why I even bothered giving our name ahead of time and killing time at Target. The whole reason I didn’t stick around was because I didn’t want Bianca to get agitated while waiting. I was trying to be Superdad and was out with my three kids and adult male cousin who is great with our kids, but certainly not used to Bianca blowing a gasket in a public place. My bride was attending the graduation of a family friend and I wanted to surprise her with a new summer “do” for Binks.

A very meek and demure looking lady looked at me as two of my kids were chasing after one another like maniacs and Bianca was in hysterics and hesitantly asks who I was with. “Bianca” I reply while giving a head gesture towards the kid who is now on the floor with tears streaming down her face and snot bubbles coming out of her nose.

Spring Breakdown

Monday starts Spring Break for the kids. I can’t really relate because I never felt this way in my life about school… but both of my school aged children are bummed about it. So are the wife and I.

Sofie just LOVES school. A few weeks back she was complaining that her tummy hurt. She was all bundled up and ready to go catch the bus when she stopped dead in her tracks and held her stomach. “Can you kiss my tummy daddy? It doesn’t feel so good.” I leaned over gave her a kiss on the stomach and not two seconds later she vomited all over the place. When we had to call her off of school she cried and cried. “I don’t want to miss school! I will miss out on all the fun!” she bawled as gigantic tears streaked down her face. She is in kindergarten though, so I will revisit this feeling she has towards school in a few years.

Bianca on the other hand… she gets bummed in a different way. Her sleep pattern gets disturbed, she becomes irritable and starts to act out. Head banging increases, meltdowns increase and then it takes several weeks to get settled back into her routine once school is back in session. So one week off, sets her back about a month.

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.

A Sign of Strength?

Let me preface this post by saying that I am not a “We can only write about good things when it comes to handling life with autism or an autistic loved one.” I am also not in the business of attacking parents or questioning their love for their children, parenting, etc. I think we are all far to quick to judge and call people names when we do not know their reality. As long as people are responsible and careful about what they write, I believe we can tackle any number of issues that arise and that others searching for answers may find comfort in knowing that they are not alone.

It was exactly that desire to draw comfort that drew me to a recent article on The New York Times website.

 

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.

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.

Making Sense of Sadness - 2012 Blogging Advent Calendar Day 16

We will return to our regularly scheduled autism related topic with the next post… for now though, some more reflection on the Newtown, CT. shooting…

I hadn't been able to put a finger on why this whole school shooting affected me so much. It just seems like so much to digest. The world seems so much uglier. It makes you angry and you can’t help but feel hopeless. Every post that I have read that makes good points about fixing mental healthcare, or finding a way to pass gun control legislation that can help protect people is met with people that don’t want to listen. Our society complains about the way things are, but every suggestion to change the status quo is met with fear of change that borders paranoia.

When it was suggested that the shooter had autism, I sat back and watched. I read statements and watched news segments. I scanned various blog posts and read numerous news articles. I was left numb. First because we still don’t know for sure if the shooter did indeed have autism, but secondly because I just didn't see how it mattered. He didn’t kill somebody because he was autistic. He killed somebody because he was mentally disturbed.

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.

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.