The Eternal Orange

I had my first IQ test in first grade. I was identified as a student who might qualify for and benefit from the gifted program, and IQ is the strongest determining factor. I remember all sorts of puzzling questions. Now, I love puzzles. But they have to have a purpose, so it may be far […]

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He’s Back!

Oh my… So much to stay and no clue where to start.  But that’s a good thing right?  The last four months have been pretty busy in this little household.We struggled a lot over the winter months with the kiddo.  His behavior and mental …

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Be Your Way

The following is a Facebook status written by my wife about an experience she had recently at an area Burger King.

A little context here… This particular Burger King is one that I spend hours at and quite a bit of money. My mother-in-law has pretty advanced dementia, so we usually drop my wife off so that she can have some quiet time with her mom while the kids and I kill time at this Burger King because of the indoor play-land and free WiFi. Bianca gets to use her iPad and my other two get to run around like nuts and blow off steam.

It was because of this familiarity, that my wife chose this particular establishment to duck into in a time of desperation.

A few years back, this sort of incident would have crushed my wife to the core. I couldn’t be more proud of her response to an incredibly stressful situation. But what if this had happened to a mother not nearly as far along in her journey raising an autistic child as we are?

To the blond young lady working the register at the Burger King on Route 30 in Valparaiso on August 15th… Yes, the very loud and opinionated lady who made it a point to sarcastically yell across the restaurant as I was walking out with my 3 boisterous children, “Thank you for coming. Please come back again”. 

I understand that it may have annoyed you that I didn’t purchase anything. That I just rushed in, with a look of panic on my face, spent a whole 8 minutes in your restroom, and proceeded to walk out with my kids. I may not have spent money there today, but I have done so many of times, as we visit your restaurant when we visit my mother at the nursing home. You see, I have a 9 year old daughter who is still not completely verbal; one who I am so very proud of because she works so hard at communicating with us. 

Until almost 4 months ago, we were spending an insane amount of money on diapers (which cost quite a bit more than those that babies wear, because of course, she’s 9). We finally got a break in that department as she is now wearing big girl underwear.

We have come a long way, but we’re still struggling with little accidents as Bianca has yet to learn how to control certain functions. Example, if she says (and signs) “potty”, we must find a potty… NOW! There is a tiny window between her expressing her need and her actual using the potty. We are teaching her to “listen” to her body so that she doesn’t wait till the last minute to tell us she has to go. 

Today was an eventful day. We got to see the Air Show downtown and we were very grateful to have many porta-potties available. We left Chicago and headed to Valparaiso, Indiana for a family member’s birthday party. Perhaps it was my fault for not stopping at home to see if she had to use the potty. We were 15 minutes from our destination when I heard Bianca say “potty, potty”. I acknowledged her need and assured her that I would stop as soon as I could. 

My intention was to stop at this very Burger King, take her to use the restroom, and buy the kids some Icees. However, not a minute passed when an all too familiar smell came over us. (Bianca was wearing a dress, thus making this that much more of a crisis). 

The kids started to complain, and the panic set in. My kids, as well as every other parent with a child on the spectrum know what comes next! As gross as this may sound to everyone else, the smearing and even ingesting that typically follows is nothing short of a fecal war movie. 

I step on the gas, praying not to get pulled over, begging with Bianca to not pull her undies off, and to hang tight. She kept reaching, but would stop at my command. Needless to say, those were the longest 7 minutes of my life. I was worried less about my car or the mess I’d have to clean, and more about adding to the trauma my other two kids already endure. I knew they’d come to understand, but the heartbreak of being so close to enjoying themselves with the cousins they love, having to turn back around after being just blocks away was something I didn’t want to see. 

I pull into the parking lot like a maniac, still pleading with Bianca not to take her clothes off or reach into her undies. I get the kids out, then slowly pull her out. I rushed into the restaurant with only the diaper bag, leaving my phone and purse behind. I get into a stall, and proceed to clean up. Luckily, (thanks to her healthy eating habits) the mess was minimal. Major Code Brown averted. I cleaned and changed her. Put her in a fresh pair of pants and shirt. Then I washed her hands. 

She rarely listens to me the way she listens to her daddy. Today, she proudly obliged to my desperate pleas. I’m so proud of her. Meanwhile, my other two minions were still freaking out, wondering if there was a mess in the car (and there was not). I cleaned the stall even though there were only a couple of spots affected. And I dried my sweat. I couldn’t buy Icees as I’d left everything in the car. 

So as embarrassed as I was by the employee’s comment, followed by the snickering and laughter of her co-workers, and the judgmental stares, I managed to continue on with our plans.

What would have normally resulted in a tear fest, cancelled plans, and a night of self-pity, ended up being a fun filled evening for my children. Bianca has come a long way, but so have I! My child is not a monster. She will not stay home. She will not be hidden from society because the world isn’t prepared to deal with her. She is learning, as am I. So if you want to embarrass someone, go ahead. But today, I’m not ashamed. I’m a proud Autism mom!

We have come a long way. A long way as a family and a long way as a society. But you can see there is still a lot of work to do. Perhaps it was just youthful ignorance on behalf of the employee. I am sure that the employees have been talked to about letting people entering the restaurant know that the restrooms were for customers only. But imagine how different the outcome would have been had the young lady behind the counter simply asked, “Is everything OK ma’am?”

And perhaps therein lies the lesson. In a day and age in which we safely hurl snark from behind the screen of our electronic device of choice in the cyber world, let us not forget that in the real world compassion, empathy and understanding go much farther and are more appreciated.

In all honesty, this event could have happened anywhere. Burger King didn’t set out to wrong my family. It was a lapse in judgement by an employee. Still, the current slogan at Burger King is “Be Your Way”. Nobody defines that slogan more than Bianca. She is true to herself and as authentic as you can get. Maybe BK needs to take that slogan to heart and encourage their employees to not be so judgmental.

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

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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.

“Are you ready?” she asked.

“I am… not so sure about her though.” I replied with a shrug and that state of calm that we autism parents can go to as the world around us is in a complete state of disarray.

I sat in the chair and plopped Bianca in my lap. This was a piece of cake when she was 4, but is really much more of a chore now that she is 8 and weighs 52 pounds.  Bianca is one smart cookie though, and as we all know forgets nothing. She knows that she has gotten her hair cut at this place before and is now in complete panic mode. Nothing is working; not my phone or scripting her favorite shows, not deep pressure hugs or singing our favorite songs. Yet while all of this is going on, the very slight and quiet lady starts to brush Bianca’s hair gently working the brush through knots and tangles.

Any time she would get some hair detangled and brushed out, Bianca would fling her head to make her hair shift or just grab her hair and mess it up. The lady would back off, wait, smile and start all over again. She must have done this a hundred times. She finally got to a point where she could start to spray Bianca’s hair down but as she did Bianca was still losing it. Now she was saying, “Rain, rain go away”, “Water”, “Agua”, “Hair” and going limp so that I could not hold her. Still, the beautician was patient and took advantage of opportunities as she got them.

As all Hell is breaking loose in my chair, an older gentleman gets seated right next to us. There were 6 other chairs that were empty in the place, it just so happened to be this guy’s luck that the two people working had their stations right next to one another. Do you know that this guy got his entire haircut done while Bianca was in the throes of despair and I did not get ONE look… not one stare? And I was waiting for it. I had the apology and explanation ready to go. It was like we weren’t even there and believe me there was no way to miss the side show that was this.

The stylist tried to put Bianca’s hair in clips so that she could do a proper job, but she quickly realized that it wasn’t going to work. She looked at me with a smile and quietly said, “I am sorry, but I am afraid that I will not be able to cut her hair. I am really afraid that I could cut her, myself or that her hair would not be even and I would hate to give her a bad cut. Maybe we try another day?”

I told her that I understood and asked her if I could have a few minutes with Bianca to see if I couldn’t calm her down.  I let her stand in front of me and got her interested in watching YouTube videos on my phone and as Bianca stood there watching Dora on my phone, the lady started delicately brushing Bianca’s hair. She then showed Bianca the brush they use to powder people with and she loved the soft feel of the brush on her face. She watched her video and played with the brush and then Bianca began to settle down, smile and started doing her happy scripting. As she did, slowly and delicately the stylist began to snip away at her hair.

Every once in a while Bianca would put her hands up or flip her hair around and the beautician would step back, smile and then resume.

All in all, it took a little over an hour for Bianca to get her haircut. In that hour I never saw Phyllis express one ounce of frustration. She never had a snarky comment or tone. I never felt judged as being a bad parent or for having an out of control kid. All she did was to give Bianca a cute haircut with kindness and patience. So thank you Phyllis at the Supercuts in Merrillville, Indiana. Your demeanor helped to put this dad at ease.

And that is how I came to pay $20 for a $10 haircut. Wish I could have paid more.

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

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No Island Here

There is an article floating about from HuffPo about things that an Autism parent will never say. (You can see it here.)  At first I didn’t really know what to make of it. I still really don’t.  In the article it talked about how stressful raising an Autistic child is and how lonely.  It said parents are peacekeepers from everyone to the family to school to complete strangers.  It claims we are isolated as parents of Autistic children.  It talks about hurtful comments.
It gives the impression that it is all inclusive, that all parents feel that way.
I don’t.
Maybe I don’t have guilt over meeting my son’s needs because I only have him.  I am able to devote my time to him without “worrying” over “unfair” treatment to siblings.  My issue with this claim is really simple: empirical research suggests otherwise.  Research shows that NT siblings are enriched by their lives with their SN sibling, not hampered by it. They are more open and understanding of those who are disabled and more likely to help their peers.  They also harbor no ill will towards their SN sibling for any reason.  Imagine that: NT siblings of SN children RECOGNIZE that they are simply different in what they need and support how things happen at home. They get it and understand it. They also often grow up to help support their siblings in their adult life, making sure they have what they need.  So, why would parents need to harbor this “guilt”?
I’m not a peacekeeper. I don’t try to make everyone happy nor do I care to. I don’t have the time or energy for that. Frankly, I don’t give a rat’s arse what some stranger in the supermarket thinks of us. It doesn’t really affect me if they are that shallow and judgey. We don’t know them. It’s a reflection of them and their character, not us or ours. Our life will go on as usual. I don’t “try not to look bothered.” I’m NOT bothered.  I also will not be a peacekeeper at school. That’s just straight up push-over nonsense.  I will not allow ANYONE to walk all over me. I will not appease them to make them happy. It’s their task to make me happy. Plain and simple. If your school isn’t making you happy, get a lawyer, learn your rights. I also don’t try to keep peace in my family or with my friends. If they can’t respect my views and how I do things, then we will spend our time with someone who accepts us as we are. We won’t be run over by anyone because they are “offended” or upset by something we do. (Thankfully this isn’t anything I really have to deal with.)
Maybe that author is isolated, but I sure as hell am not.  You see, I put effort into my relationships with family and friends to maintain them and keep their value.  Do I compromise myself in the process? No. Just read my last paragraph.  For every one person who has dropped out of our lives we have gained 10 or more who are more than happy to share our lives. My friends and family have all done what they can to learn about my son so that they can support us however they can. We have some real people of value in our lives. I have also found my way into a larger community of people who share my experiences and are also raising an Autistic child (or 2).  I have never felt isolated.  I never will. I also don’t like the author’s assumption that my son isn’t part of the social world. He has friends. He loves people. He’ll chat the ear off anyone he knows. He plays with and shares interests with his friends at school.  We are also very close. We are not “isolated” as if we are two strangers living in the same house. My son will find a way to talk to me.  Communication is not always speech. He’ll write. He’ll draw. He’ll create. He tells me everything. Sorry, no isolation or lack of social interaction here.
Do I hear stupid things in regards to my son being Autistic? Sure. But it’s a teachable moment. Education is the single most powerful tool in the world. I also hear hurtful things about me, my parenting, and even my weight (how I need to gain a few pounds, for the record I’m healthy and fit and at a perfect weight). I get assumptions all the time about how because I’m deaf I should be dumb. Have I heard, “He doesn’t lookAutistic…” You betcha. It boils down to the ignorance (meant by the true dictionary definition) of the person making the comment.  They simply do not know or understand.
Is raising an Autistic child stressful? Sure. Just look at how we are treated. Look at how anyone with a disability is treated. Time and time again, day in and day out, we are treated like we are less than human, not worthy to be alive or tended to. We cannot get the help we need, the services we deserve.  But that doesn’t mean it’s unbearable or too much to handle. I don’t think raising an Autistic is that hard, frankly. He’s just another kid. (See here.) Able and capable of doing what all other NT kids can do. We just do things differently. Our routines are different. Our needs are different. It certainly isn’t this down-in-the-pits, oh-woe-is-me, horror.
I do not worry about the future. My son will be just fine. He will live where he chooses to live, be it here or his own home, doing whatever he wants to do with his future. He is well loved by so many. Since we are not isolated in any way, socially or geographically, I have no concerns over anyone being around to lend him a hand when he needs it. This holds true whether or not I am here or not. I know he will be ok. I have confidence and faith in him and our circle. After all, we started the foundation to his own self-determination long ago. The seeds of self-advocacy and independence are well planted. What do I need to worry about?
We don’t “suffer” anything. We enjoy life. We are whole, complete, even content. Is it really that hard to believe?
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