Goodbye

    Am I the only parent who has an autistic child who just considers themselves a mother? I'm not an "autism mom." In fact, very rarely do I even feel much of a connection with parents who have a child on the spectrum. There are a few and they know who they are.

   Am I the only one that hates assessments? The sterile atmosphere scattered with toys and fluorescent lights beaming down above, the presence of a stranger requesting my son "perform" for them so they can see what he can say or do. It only counts if he does it right then and there.

   Am I the only one who hates it when people tell them sorry that their child is autistic? How could you say "sorry" about my beautiful, curly headed, squealing, precious child? Does anyone else honestly like to be pitied?

   Is anyone else scared that this type of thinking, this pity, this shame people feel, will eventually be known to their children? That kills me more then anything. To think my son will someday know that people pity him and are sorry he is the way he was born! It terrifies me!

   Sometimes I wish I could live off the grid. Drop the therapy, sell everything, live out in the middle of nowhere. Yeah, I know there are tons of holes in this fantasy and we don't need to go there.


  As time goes on I have realized the problem is not my son or "his people." It's so many of you out there. For the time being, I am done blogging. It doesn't serve much of a purpose to me anymore. It use to be therapeutic, now it's just a waste of time. Of course, I will still dote on my son all over Facebook and post advocacy related things until everyone deletes me for being so annoying. I don't care.

   I  know this doesn't sound "sunny," but the truth is, things are great. I look forward to every new day with Lukas and I honestly feel more fulfilled then I have at any other point in my life. No longer do I sit and question if I have made the right choices in life, if I should change careers, or wonder what if. I have this calling and the calling is to be the best mother I can be to my son.
 

 

 

The Fourth

  As most parent's of children with autism know, the fourth of July can be a day that is not fun or exciting. In fact, it can be downright hell for some. The reason being that there is a lot of sensory things going on that can be difficult for autistic people to deal with. The crowds, smells, and the change in routine is just the beginning. The fire works can be too much visually and the loud booms can seem deafening and painful to someone who is sensitive to noise.

  I have held off on taking Lukas to actually see fireworks. I figured he was too young and I didn't want him to be scared. Lukas is 3 this year and we would be able to view the fireworks by walking a short distance downtown. I really wanted to try it out with him because I had a feeling that he would handle them just fine. I figured if it didn't work out, we could make a mad dash home. I sat and watched the weather report and it was a horrible night for fireworks, but I held onto hope like a child that they were still going to happen.

  My neighbor friend Lori decided to come over with some sparklers to make up for the fireworks probably being canceled. I thought Lukas may have no interest, but it turned out he was thrilled by them. He jumped up and down and giggled and adored him. We ended up deciding to brave the weather and the three of us walked downtown to see if the show would go on. As we were waiting it began to POUR. We stood at the courthouse, pushed together like sardines with other people while the rain came down. Lori's husband was waiting nearby with his car to rescue us and take us home. We were about to dart when all of a sudden the fireworks started! BOOMBOOM! The moment of truth? Lukas didn't mind at all. He watched them while Lori held an umbrella over our head. When they were finished we dashed through the rain to a car waiting for us to take us home. We were soaked and I didn't care, Lukas didn't care, and I don't think Lori cared either.

  I am so proud of Lukas. I don't know if he will always handle the fireworks so well, but he sure did this year. Rain, chaos, people galore and he remained cool as a cucumber. This was a fourth of July that I will always remember.

Dinner and the Park

   Today Lukas and I stayed in our jammies and watched Thomas the train movies. We took a nice long nap which I know I am going to pay for later when Lukas is bouncing around at 11 o'clock tonight. After our long day inside I was having some serious cabin fever. My parents always said, "You don't need fireworks all the time." I beg to differ, so we went out to dinner.

   Anyone who has a child with autism knows the struggles of going out to eat. We didn't even try until recently because we had a couple bad experiences and it was just stressful and not enjoyable for any us. Plus, going out to eat is kind of a waste of money when you are trying to live frugally. We debated on going to a buffet where the food is immediate so we wouldn't have to deal with Lukas waiting for food. The thing is, neither of us wanted to go to the buffet restaurant, so we went to a regular sit down place where we wait for our food.

  We made our plan. If there was a problem after we ordered drinks, we would just pay for the drinks and leave. If there was a problem while eating, we would get our food in a to go box and leave. No biggie and no reason to stress about it. Lukas went in armed with his I-pad. He sat nicely the whole time, ate his food and did get up once, but he stayed within a few feet. I told him not to leave. Michael got up to get him and I had Michael wait to see if he would try to take off. Instead, Lukas came back and sat on my lap. He was awesome! The dinner was stress free! We left and when we walked out I told Lukas to say "Bye Bye" and he did.

  We decided to take him to the park after dinner. There were a few little league games going on. Lukas wanted out of the field and yelled, "Bay Ball!" Future baseball player? Maybe. He told us the things he wanted to do at the park like, "Slide" and "Swing." It kind of broke my heart when we left and he didn't want to leave. He was yelling, "SLIDE!!!" as Michael buckled him into his car seat.

  The point of this post is to encourage parents to go outside of their comfort zone with their child sometimes. Make a plan if it doesn't work out then don't stress about it. We had an awesome evening that wouldn't have happened if we didn't even try. We always follow Lukas' lead and I think that's the most important thing. I truly believe these things are all learning experiences for Lukas and they will be good for him in the long run.

A year later

   June 22nd passed by and I didn't even realize it. You see, June 22nd of last year just so happened to be the worst day of my life. This was the day that Lukas was diagnosed with Autism Spectrum Disorder. I started blogging soon after his diagnosis as a way of coping with the new information I had gotten. In the beginning this blog was even titled, "Screw Autism." The evaluation was not a good experience (see my first post) and was filled with outdated doom and gloom information. It was no wonder it was the worst day of my life.

   Fast forward to today. I would have never imagined that June 22nd would come and go without me noticing. My husband Michael and I are at peace with autism. I can't deny that I don't worry or stress myself out about the future and it's certainly not always butterflies and rainbows, but neither is raising any child. I realize that our life is different and we have to be more flexible then other parents. I realize that we are up against a world that doesn't understand us and sometimes this is even applied to the people who are closest to us. My job is to help them understand.

   Lukas has gone from an 18 month old with one word (shoes) to a 3 year old who though uncommon for him, told me today, "I want water, please!" in an angry demand to go to the river and wade around. He is not conversational yet, but he labels and makes requests such as, "Milk, please!" He cares most of the time now when I leave the house and yells "Maaaa!" but still usually only slightly smiles on my return. He doesn't interactively play with other children, but he has tried and he likes being around people. We have even made friends with a local group of moms, which is wonderful for us.

  As Lukas has gotten older he has become more difficult. He gets especially frustrated by things he can't communicate to us. He hates coming home from being out and about. The meltdowns are tough, especially when he bangs his head on the floor, pulls his own hair, or smacks himself. He gets so frustrated or overwhelmed and it kills me because it drives him crazy. I have to turn off emotions when this happens and most of the time the meltdown just has to run it's course. When it's done, he usually comes to me and has me hold him and then all is well. I tell him I understand and everything is ok. Meltdowns and difficulties aside, the majority of our time we are happy. He has come so far and he has so much more to go. He is still so young and I plan on enjoying every moment we spend together.

Let the sun shine in

    It's time for another update! Lukas turned 3 on April 18th. We took him to Tweetsie Railroad for the day and we all had a blast! He has made so much progress since we went a little less then a year ago. He waited nicely in lines (before one of us would have to hold a place in line and one would have to run around with Lukas.) Last year, he didn't show very much interest in the train, but this year he smiled and was thrilled to be on it. Last year, we had to get him something to eat outside of the park because we knew he wouldn't eat what they had. This year he sat nicely at a table and ate. The best part for me was him riding the merry go round. He use to have a hard time gripping on and seemed bored with it. This year he SMILED, gripped on well, and looked around with wonder! I cried! He rode tons of rides like last year and was even upset when we left because he wanted to stay. Magical day.

   Lukas exited early intervention and has just finished his first week of therapists coming into his private preschool to work with him. He will be working with a speech therapist, an occupational therapist and a special education teacher. I am so grateful that his preschool is so wonderful, accommodating and inclusive. It's exactly what Lukas needs and he adores school. Today was Mom's Day at school where they did a performance for all of the mothers. Gone are the days of me worrying if Lukas will be OK on the stage. Each time he has always done great. He knows exactly what he is supposed to be doing. I can't wait for the day when he is able to sing along. Always always always presume competence.


   There is no huge statement in this blog post. Only that Lukas is doing well, progressing, learning new things, and branching out with foods. He has totally changed my perspective on life and made me a much better person. I look forward to waking up with him everyday and love him just the way he is.


  

The R-Word or: At Least Four Things You Should Probably Never Say in Mixed Company

*Warning: The following article contains language that may be considered offensive. This article is intended for educational purposes and does not advocate that the inflammatory language contained herein be used in everyday conversation.

 

            Through my experiences I’ve found that more often than not, people use the word ‘retard’ so loosely and so frequently that one almost forgets the rancor that lies just below the surface. It is a word filled with hate and judgment. It is a word that cuts to the very core of anyone who has ever fought with a disability. It is a declaration of war for anyone who has ever been bullied or ridiculed. For the person saying it, it is often nothing more than a stock insult that is easily thrown about without much thought. For the person at the receiving end, it can be devastating. How two people engaged in such an altercation can derive two very different meanings from this word is not as complicated as it first appears. All you have to do is have a little empathy. I believe a short anecdote will illustrate my point:

 

Brad and Tom are playing basketball. Brad has a sister who has cerebral palsy. Brad loves his sister. Brad has had to defend her against hecklers and bullies for as long as he can remember. Tom does not know about Brad’s sister. Brad has just called a foul on Tom. Tom, believing the call is incorrect, tells Brad that he is “fucking retarded”. Brad is hurt.

 

This nonchalant put-down can be heard during countless interactions every day, especially between young men. It is used so frequently that it has entered our collective vocabulary. Some believe that this cavalier attitude towards the word has sucked the venom from it and left it merely playful and innocent. I aim to convince you otherwise.

            What do you hear when someone says the word ‘faggot’? I suppose it depends on who you are. If you’re a homosexual, you probably hear a hateful slur aimed at dehumanizing or emasculating you. You hear someone who has targeted you because of who they believe you to be, a stereotype, and not who you really are; an individual. If you’re a straight man, you probably hear a harmless jest. You hear manly banter designed to poke fun at someone with little to no regard of the group being maligned.

            What do you hear when someone calls you a Jew because of frugality? If you are actually Jewish you might hear three thousand years of anti-Semitism. You might hear the gates of Auschwitz closing heavy behind you. Or maybe you just hear someone whose ignorance or unfamiliarity with the Jewish people has left them believing the caricatures presented by Christian civilization. If you’re not Jewish, you probably simply hear a classless joke that you probably wouldn’t repeat around your kosher friends.

            What do you hear when someone says the word ‘nigger’. If you’re like most Americans, you probably cringe when even seeing in printed on paper. If you’re an African American, you probably hear the crash of waves against the hulls of the slave ships. You might hear the songs of your ancestors as they sweat in the cotton fields. You might hear the voice of your grandmother as she tells you stories of the 1950s when people like Strom Thurmond were not villains but public servants elected to protect the good people of this country from the rising tide of lazy Negroes.

            How do you feel? Are you uncomfortable? Do you squirm or fidget when you read these words? Would the word ‘retard’ offer you the same type of distressing anxiety if it were uttered? Some will argue the validity of comparing slurs like ‘faggot’ to a juvenile insult like ‘retard’. At their essence, though, they are the same. They both mean to marginalize a group of people. We have taken these people and turned them into a punch line. We are brought closer together when we push them further away from us. These minorities are the butts of our jokes. It’s funny because no one wants to be a nigger. No one wants to be a faggot. No one wants to be a retard. That’s why it’s funny. You are laughing, right?

            If we do ban the word, one could argue, it will simply be replaced with a different pejorative term. All you have to do is look at the etymology of the word ‘retard’ to understand that this is true. Mental retardation had three separate classifications before the early 20^th century. Those with profound mental retardation were referred to as ‘idiots’. Those with severe to moderate retardation were called ‘imbeciles,’ and those with mild mental retardation were called ‘morons’. These were the official medical terms used unanimously throughout the West. The term ‘retard’ slowly replaced these terms as they were deemed offensive. Of course by the 1960’s the term ‘retard’ had become just as offensive as the previous terminology. So whether you’re referred to as a “Mongoloid’ or a ‘retard’, it is the intent behind the word and not the word itself that truly deserves an energized revamping.

            Hate starts in the heart and in the mind, but until it reaches the lips it is almost undetectable. It hides in the shadows until you speak and all of your prejudice and malice spill out as freely as you let them. I advocate not to control anyone’s speech or to force their hand and control their thoughts, but to persuade their hearts. Our hearts influence our thoughts. Our thoughts influence our actions. Our actions have the power to make this place better than we found it or much, much worse. Besides, once you start dictating what people should think you start wading in some pretty murky water.

            Freedom of speech is not as all enveloping as some would have you believe. While I understand the desire to denounce the politically correct among us as uptight and unwavering (and without a sense of humor), I also understand that speech can sway people’s actions and those actions are not always polite. Speech can rile people into   frenzy. That’s why you can not instigate a riot. Speech can motivate people to kill, that’s why you can not commit conspiracy to murder. Speech can infringe on the rights of others, and that’s why hate speech is restricted by the federal government. Don’t be guided though, by the FCC. Be guided by plain moral decency. Do not let the government or the politically correct among us guide you. Let your heart guide you.

            Is it ok then to make a joke about people with disabilities if your heart’s in the right place? Ask comedian Anthony Jeselnik. For his hopefully short lived show on Comedy Central, he posted a picture of a girl with progeria side by side with a picture of Gollum. This girl has a disease that will eventually kill her and the joke is that she is as ugly as a creature from Lord of the Rings. Is it funny? It is specific. Any humorist knows there’s more gold in specificity than being broad and general. Let’s narrow it down then. Who is retarded? Are autistic people retarded? Are people with Aspergers retarded? Or are we strictly referring to folks with Down Syndrome? If it’s ok to make a Jew-joke around a bunch of Catholics, is it ever ok to make a joke about disabled people? With 1 in 50 kids now being diagnosed with ASD, the odds say you should probably keep your mouth shut.

            We are all bullies to a degree. I don’t say any of this under the illusion that I haven’t spoken these words myself at one point or another. I have had the opportunity though, to have my eyes opened wide. I know that I’ve said mean things. We all have said mean things. It’s human nature to hurt each other. We say things that devalue others in order to bolster our own poor self esteem. This is a false sense of satisfaction we get though when we hurt others. It is not real. It is not lasting. There are people out there who can be persuaded to open their hearts. There are those who will not be persuaded. To them I say: just as though you wouldn’t say the n-word around the Brooklyn Nets, you should probably check your surroundings before muttering the r-word. You never know when you’re in mixed company.

 

We Need Equal Rights: NC House Bill 498

Special interests groups are like bands playing at a music festival. They’re all standing on separate stages vying for your attention. By themselves they all sound good. Yeah, you tell yourself, why not support the cause to stop deforestation in the Pacific Northwest? That sounds like a righteous cause. But when you’re standing in the middle of an open field with eight stages surrounding you, it doesn’t matter if the best bands in the world are playing because it all sounds like crap when it’s mixed together. But if autism affects your life, chances are your ears are already tuned to pick up on that frequency and that frequency alone. Don’t get upset when folks say that you have a one track mind. It’s not tunnel vision; it’s clarity. And if autism affects your children, you better be on one of those stages yourself like the late Peter Tosh demanding your equal rights because no one else is going to fight for your family with that type of gusto. Case in point: NC House Bill 498.

If you live in North Carolina and ASD affects your life in any way then you’ve probably already heard about House Bill 498. It’s a proposed bill that will prohibit insurance companies from denying claims filed by parents of autistic children for therapies proven to enhance their quality of life. If you live in one of the 31 states that specifically require insurers to provide coverage for autistic people then you’ve already fought this battle and understand how difficult and how important it is to the future of our children. If you live in one of the other 18 states that currently do not have laws regulating insurance companies and their policies regarding autism, lace up your boots because it’s going to be a long hard night in the fox hole. If you were wondering, the music festival metaphor has been paused and replaced temporarily with a war metaphor because there’s really nothing pleasant about gorilla warfare. Unless, of course, you have an iPod and then it’s only mildly tolerable.

Why fight at all? you might ask. Well, let me first explain how health insurance works. You, the insured, pay an insurance company thousands of dollars a year so you can get prescriptions drugs and doctor visits at a discount. You’re also hoping that you don’t come down with anything huge like AIDS or cancer, but are confident that your insurance company will foot the bill if you do. Your insurance company feeds off your misplaced confidence in them and, while gladly taking your money each paycheck for some discounted prescriptions, will do everything they can to deny your expensive hospital bills. This gives you the option to either ruin yourself financially or simply lay down and die. So when you make the decision to fight for NC House Bill 498 or some similar bill, you’re not fighting for a government handout. You’re just fighting for what you’ve already paid for. You’re fighting for what you’re entitled to.

Before 1920 women in America were not entitled to vote. They had to fight for it. Genevieve Clark had to fight for her right to vote. She had to plead with her father. She had to argue, to beg, to discuss and to rationalize with him. Her father was the Speaker of the House. Genevieve Clark had to convince him to endorse that bill. Who will you convince? Who will you email? Who will you call? Whose doorstep will you stand on demanding your equal rights? What stage will you be on?

Before 1954 little black children in America had to walk passed schools designated for little white children. Sometimes they would have to walk miles passed these schools. Linda Brown was forced to attend one of these schools. Linda Brown was forced into a sub par school. Linda Brown was given a sub par education. Linda Brown was a third grader in Topeka, Kansas. Her father had to fight for her. Her father had to look his little girl in the eyes and promise to do all that he could to provide her with a decent education. Then he had to live everyday after making sure he didn’t break that promise he made to his little girl. No one gave her those rights. Those rights were fought for. How hard will you fight? How loud will you scream?

Mathew Sheppard was murdered in 1998. Mathew was tortured and murdered by two men. Mathew was homosexual. Mathew was tied to a fence after being severely beaten. He was left there for eighteen hours before being discovered. He died shortly afterwards. The two men told Mathew that they were homosexual in order to gain his confidence and lure him out into the country. Their defense during the trial was temporary insanity. They claimed after convincing Mathew that they were gay, he made sexual advances towards them. It was those advances, they claimed, that drove the two men temporarily insane. They killed Mathew because he was homosexual. The fight for LGBT rights is still being fought. It is being fought for vigorously. It is being fought for by the parents of Mathew Shepard. It is being fought for by any parent who had to bury their child. It is being fought for by anyone being told they can’t marry the person that they love.  It is being fought on a state by state level with the mantra “Are You on the Right Side of History?” Well, are you?

Susan B. Anthony wasn’t born an advocate. Neither were you. She was just a woman who was tired of other people telling her how this life would be for her. Those same people are trying to dictate your life and the lives of your children. Become a parental advocate. If you are an adult with autism, advocate for the next generation. Don’t let this country deny today’s children the same rights that were denied to you. If you live or currently reside or have been even temporarily placed under the umbrella term ‘disabled’, I urge you to stand in solidarity with those fighting this fight. Martin Luther King once said, “What affects one directly, affects us all indirectly.” But when fighting for these rights, be warned, I believe they did the same thing to Peter Tosh that they did to Dr. King. So are you willing to fight? Are you willing to dig deep in the trenches? Always remembering that one voice can ripple through the still waters of humanity, are you willing sing?