People are people. We all deserve to live without fear.

Right now arguments for and against, Bill C-16 are being heard in the Canadian Senate. The main purpose of this bill is to amend the Canadian Charter of Rights and Freedoms and the Criminal Code to include gender identity and expression. What this means is that those who identify as something other than their assigned at birth sex and also might express gender differently from the norm can do so freely; without fear of discrimination and persecution.

The level of prejudice against gender non-conforming, transgender and nonbinary individuals is astounding. Many of these individuals are children, whose parents are also being criticized, ostracized and persecuted for allowing their children to be themselves. Yes, even in Canada. Our Senate had the opportunity to set a shining example of tolerance and acceptance not only to its citizens, but to the world.

There are many road blocks and opposers. Those who hold closed minded beliefs that there is no gender spectrum. Who believe that we are male, or female, determined by our reproductive organs at birth. That allowing our children to be anything that does not conform to the social construct of gender identity is not only wrong, but abusive. Parents who fear for their children’s safety. People who claim to be Christians, yet who refuse to love and support those who need it the most. Then there is the bathroom issues. People are afraid to let them use washrooms that don’t match their assigned at birth genders. Which leaves them incredibly vulnerable to attack, both physical and sexual. What they are all missing though, is the true spirit of the bill.

The Bill is meant to protect one of the most vulnerable and misunderstood minorities in our society. The ones who risk assault, whether physical, verbal, emotional/ psychological or sexual every time they leave their homes. Those who often cannot go to the churches of their choice because of being shunned and rejected for being themselves. Who are subject to ridicule and judgment wherever they go. Who are at higher risk for suicide, because they cannot be themselves, and cannot bear to be who society says they should be. People who don’t want to harm anyone; they simply want the rights to be treated as human beings whose rights to safety and existence are protected under Canadian law.

If you are in Canada, please contact your senators and let them know that this bill must be passed. Whether you agree with how they are living their lives or not is irrelevant. The point is that these people are humans, who have just as much right to live in freedom and peace without fear as you and me. Many are children, whose loving parents not only fear for their safety, but for a future without protection from discrimination and hate crimes. Help keep ALL of our children safe. #PassC16

Love and blessings,

Maria

Words as Weapons

I’ve been bullied my whole life. Not being well versed in social skills or nonverbal communication has often left me open to attack. It’s not that I never tried to fit in. I did. I desperately wanted to belong. I had no idea that I was an Aspie growing up. I was just a nerd, and a bookworm. I wasn’t athletic or particularly coordinated; wasn’t well to do or stylish; or even popular among the misfits. I never understood why nobody really liked me; or why my so-called “friends” would only hang out with me when they had nothing better to do, or because they had to.

The physical attacks I could handle. The laughing, pointing and taunting hurt. The looks of disgust and contempt from my classmates (and later peers) became commonplace. I barely noticed (or at least acknowledged) them after awhile. It was the words. Those words still haunt me. Every mean word ever said to me, to this day, I have taken to heart. I remember them all. I play them over and over in my head, like a record. Try as I might, I just can’t seem to erase them, or to let them go.

Even now, as a grown woman, I am still vulnerable. I am afraid to speak my mind, for fear of being attacked by those who don’t share my opinion. By those who would judge me for my beliefs, and for being too sensitive. No matter what I say, it seems that I am wrong. I’m complaining too much; or being self-righteous  or preachy; or just downright naive. So I just don’t say anything at all. People think I am antisocial or snobby. It’s not that. I just have no idea what to say, or how to say it.

After a while, it starts to eat away at you. You doubt yourself, constantly. You feel guilty for having an opinion. For needing validation and comfort. Eventually, you start to wish that you just didn’t think or feel at all, so that you wouldn’t hurt so much.

You practise conversations in the mirror, or as you are doing daily tasks. You play each scenario over in your head, over and over again. Then when it’s time to face the music, you choke. Your words somehow fail you. It’s as though you have forgotten how to speak at all.

Even online, it’s the same thing. You post a status. Someone doesn’t like it. You second guess yourself, and remove it. Post another one. Get attacked for that. You just can’t win. So you end up posting meaningless crap like what you had for dinner, because you are pretty sure that it’s safe.

It’s all about the words. Online, you can’t hear a person’s tone to know if they are angry or amused. In real life, a word spoken in anger can repeat in your mind like an echo. It becomes etched on your brain. So much so, that if heard enough, you start to believe it. You believe the thoughts that come when you hear these words. It makes you doubt yourself. Kills your self esteem. It’s much easier to not say a word, than to erase the damage that it can do. The old adage “Sticks and stones may break my bones, but words will never hurt me” is wrong. So wrong. No weapon is as powerful as that of the spoken and written word. Please. Before you react in anger, or think you are harmlessly teasing someone, stop and think of how you would feel if these words were directed at you. Choose your words wisely, for you can never take them back.

My children never cease to amaze and inspire me.

My child is becoming an incredible young woman. She sings, acts and writes. She’s only 14, but has the soul of an old poet from days long gone by. She just wrote this, and I had to share it with you:

Today has been a tough day without you

By TC

I sat in the waiting room, waiting for someone. That someone was you. I looked out the window, looking for you.

I saw nothing. I sighed, “When will she be here?” I wondered.

I sat there for what seemed like an eternity.

I looked out the window again, and you still weren’t there. I sighed again at the lack of anyone there. Not a single soul to be seen.

Another eternity of sitting in the all too familiar chair I’ve always sat in. I was getting worried.

“Did she go the wrong way?” I wondered.

I heard something. Filled with excitement, I looked out the window again. There were people, but now you. Cars pulled into the driveway, and people entered the building. I had my coat on the seat next to me, reserving it for you. I was starting to get even more worried.

Then I looked at the Television…

I saw security footage. There you were, beside a bed in the hospital. You were leaning on the bed, crying softly.

“I miss you so much…” You whispered. The rest of the bed moved into view, and I saw a familiar face.

I looked out the window, panicking.

“C’mon, c’mon, c’mon! Where are you?”  said out the window.

I then sat back down in that same chair I sat in for ages. “She’ll never come…” I mumbled. I teared up, then heard something else.

I looked out the window, and saw one last car pull into the parking lot. I looked away as the car parked. I couldn’t stand it anymore.

I sat down, tears from my eyes puddling onto the floor in front of me.

I heard someone walking down the hall. The door then opened. I looked towards the door beside my chair. I saw you. You walked over to me.

“How long were you waiting?”

“Too long.”

You picked up my coat off the seat I had reserved for you, and sat down. You hugged my coat, like you had been desperate for anything to do with me for years.

I smiled, held you, and said the most meaningful words I’ll ever speak.

“Today had been a tough day without you.”

Learning to let go

Being a parent is hard. Especially teenagers. It’s frustrating and heartbreaking and so damn hard.

You spend years trying to make sure that these special little humans you have been entrusted with grow up right. With morals, and values, and manners. You try to steer them away from making the same mistakes as you. To teach them to learn from their and your mistakes (it’s not always a good thing when they follow in your footsteps in some respects, after all).

They start out needing you for everything. Some days you have to hide in the bathroom just to get a minute to yourself. You are their whole world. The moon and stars were hung under your command. Then one day…Everything changes.

You notice it in subtle ways. They start to resist holding your hand. Want to get their own snacks or drinks. Don’t need you to fall asleep anymore. Want to get baths on their own. Things like that. You notice them becoming less of a child, and more their own amazing young individual. Who gets older, and taller, and wiser every day.

Then they get a bit older, and assert their independence more. Going to hang out with friends. Taking a bus on their own. More and more you feel them slipping away from you. You worry. Are they ready? Have I taught them enough? Did I miss anything? Will they be okay? Will they stumble and fall, and get back up with their heads held high, and try again? Do they still need you? Will you always be the “go to person” that you are now?

It’s silly, I know. We are supposed to raise them to be successful at living on their own. To go off into the world and be amazing. We’re supposed to relax, knowing that we have done our jobs. It’s time for us to live again as adults, not just parents. Except, when you have a child, especially one with extra needs, it’s not that easy. The urge to hold on tight is even stronger. You worry that you haven’t done enough. That they will have trouble living on their own. Getting a job. Finding love. Maybe even raising a family of their own. When you have a child who is considered to be “high functioning”, their expectations don’t always match their abilities. Sometimes they exceed them. Sometimes, they just don’t match up. The urge to helicopter is overwhelming. The older they get, the harder you have to fight it.

Back to the whole “letting go” idea. Our lives have become so entrenched with taking care of their every need and all of the extras, that you forget that you are a person too. Not just a parent. Even more panic sets in. What if you forget how to adult? If you don’t know who you really are? What if you don’t like who you are without being an Autism mom? What if you and your spouse can’t connect and relate anymore? I know that many people would tell me not to complain. I am lucky that my kids have the potential to go out into the world and be superstars. Or to be really amazing, ordinary average guys. Except that they aren’t ordinary, average kids. This is my problem. I have no idea how I am ever going to be able to let go. 😦

Enough already!

I am fed up. Frustrated. Heartbroken.

I just can’t wrap my head around how cruel people can be. How closed minded. How judgmental. How unwilling they can be to understand and accept things that cannot be controlled. Things that are not a choice.

You don’t get to choose your parents. Your race. Your gender. Your sexuality. Your neurology. These are things that are  predetermined by the powers that be before you are even born. Yet somehow, people seem to think it’s okay to think you are less of a person or unworthy because of them. Especially if they make you “different” in a way that is not pleasing to them.

Don’t like my Autistic child’s special obsessions, needing extra help to do what you think are menial tasks, their meltdowns? Too bad. Their Autism is how their brain is wired. They were born that way. Did they choose to be? No. Still, it makes them no less worthy, important, deserving of love and acceptance.

Don’t like the idea that a man might feel more like a woman, or vice versa? Does the idea of a man kissing another man, or two women being married and parents make you uncomfortable? Too bad. Their sexuality and gender orientation are not a choice, either. Are they proud of who they are? I sure hope so. For those who are brave enough to come out to their family and friends, and eventually the world, I admire and applaud your courage and strength. I am a firm believer that you don’t choose who you fall in love with. Love chooses you. Love knows no gender. It knows no race, religion, or any other status in life that may cause you to be looked down upon for not being “socially acceptable”. Who made up the rules, anyways?

Here’s how I see it: Love is love. People are people. We’re all human. We all need love. We all need acceptance, friendship and understanding. We all need companionship.

Before you judge another, stop. Think of how you would feel if you were the one being judged. Being told you were a disappointment because of who you are, or because you don’t live up to some imaginary ideal of who someone thinks you should be. Being told you weren’t good enough, or insulted and ostracized for being you. Living in fear of someone finding out who you really are, where you come from, what you believe in, who you love. Really think about it. Still want to say something? Still think you are better than them? I sincerely hope not. Nobody should ever be ashamed to be themselves. Would you really want to be the one to make someone feel that way?

Enough already. It’s time to end the hate. #PeopleArePeople  #WeAreAllHuman #LoveisLove

It’s not okay.

I’ve been debating about writing this blog. I’ve thought about it for days. Played over in my head what I want to say. I feel that I need to express my feelings about what happened on Sunday at Pulse Nightclub in Orlando. Not because I know someone who was murdered or injured there; although I know people who did know at least one of the victims. It’s because it has affected me deeply and profoundly, in a way I never thought it would. I have mourned for these people and their families. I also in a way, have mourned for the future for the generations to come. We’ve fought and won a few battles, but so many more have been lost or yet to be fought. I don’t think our children will ever truly know what it’s like to live in peace and harmony (or if in fact such a thing is even possible to exist).

I am Canadian. We have much stronger gun control here (except it seems in the big cities- although gun violence is still nothing like it is for our neighbours down south), and I support it. I realize that guns aren’t the problem, necessarily. I strongly feel that automatic weapons should not be available to civilians anywhere, but I digress. The problem isn’t the guns or their availability. It’s the reason people use them. It’s the hatred, the intolerance, the prejudice. We as humans tend to fear or dislike what we don’t understand. We don’t like when people are different or have different lifestyles than we do. As much as we tout the whole “mosaic” of multiculturalism, there is a long way to go.

This was not about a man who happened to be a Muslim. I think that ISIS was an excuse that he used to hide what really was going on in his head. The hatred, the fear. The self-loathing. This is the problem. There is a lack of support available. For those who have mental health issues. For those who not only are living with it, but those around them. Learning tools to help loved ones, as well as themselves. Most importantly, it is about the loss of life of innocent people who were just out to have some fun. To look for and express their love without fear of being judged or hurt. In what was supposed to be a safe space.  I took my boys to a vigil last night for Orlando. I am not sure how much sank in, but I hope that it taught them something about compassion and tolerance, and the effects and consequences of intolerance. *Note: I do NOT feel sympathy for this man. He was violent, evil and hated the world. There is NO excuse for the actions that he took. Nothing can lessen the pain he caused.*

The biggest problem is the issue of hatred, prejudice and intolerance. It is something that is handed down from generation to generation. It’s so ingrained in us that often we don’t even realize that we are perpetuating it. It shows up in seemingly innocuous things we find ourselves saying every day: “I’m not racist, but…”; “I’m not gay, but…” “I’m not religious, but…”. If we haven’t said these things ourselves, we have heard loved ones say them. It might be a thought. A hesitance when we see something or someone who is different and makes us feel uncomfortable or fearful. When we realize it, we feel ashamed and guilty.

Yet so many of us still fail to act upon changing it. Changing the way we think, and the way we act. It goes far beyond posting on social media. It is reaching out to someone who is suffering. Someone who is disabled, or mentally ill being made fun of or stigmatized. An immigrant being targeted by the racism of others. Someone who is different than the status quo being bullied. An LGTBQIA couple being glared at or being shunned for expressing their love for one another. The list goes on and on. Those who are different from others, whether it be due to sexuality, gender, race, religion, disability, mental or physical illness, socio-economic status or even political beliefs (or whatever makes them different).

I try to teach my children to be tolerant. To not judge others for any reason. To accept and love people for who they are. To stand up for those being oppressed or bullied. Still, I struggle a lot. I struggle to teach them how to react when THEY are the ones being targeted. You see, I don’t really know what to do in that situation. Tell an adult or someone you trust. Well, that only goes so far. What if the ones they tell do nothing (or can do nothing) about it? How do I teach them to protect themselves? They’ve both been targeted before. My youngest, for being Autistic/ADHD and being tiny. For my oldest, for being Autistic and for being bigger than his peers. Also, for mental health issues. Soon, as he becomes more comfortable and discovers where he stands in his gender and sexual identity, I will need to worry about him even more. Worry about his safety. Worry about his self-esteem. Worry about his depression and desire to self-harm and suicidal thoughts. All things that he has struggled with for years already at the tender age of 14.

I want to support them. To teach them that they can be anything they want, and whoever they want. That they can love without worry of being persecuted. That those who really matter will love and accept them no matter what. The problem is, according to society, that still isn’t true. They will be limited because of their Autism. My oldest will be judged for having mental health issues and for being LGTBQIA. I want so badly to prepare them for the world, and to one day set them free to spread their wings without worrying about getting that phone call. The question is, how do I do that? How do I teach them that it’s okay to be yourself, but only in certain places? That I want them to love who they are and follow their dreams, but that they need to be careful of those who don’t feel the same way?

I’m terrified for what the future holds for our children. As much progress as we have made in securing equality for all, we have so much farther to go. For every step we take forward, we seem to take another backwards. The world is full of so much violence and hatred. It’s no wonder we are afraid to let go, and that so many of us have become “helicopter parents”. In some ways it hinders our children, but can you blame us? It’s a lot scarier out there than it was for us growing up. The more we learn, the more we have to learn. I just hope that we, and they, are up for the challenge.

 

Why? Because People Suck. That’s Why.

People are funny. They want to fit in, even if it’s with a bunch of judgmental a**holes. Why? Because we’re human. Humans need other humans to survive. It’s both a blessing, and a curse. The world would be so much easier if it weren’t this way. Unfortunately, none of us would be here at all if it wasn’t true.

You see, when people are different, it’s a problem. Other people don’t understand different. It scares them. It disturbs them. Yet, it fascinates them to think that there is possibly other ways to live than the way that they do. Other ways to think. That there is life outside of the fishbowls that they live and find comfort in.

People are judgmental by nature. If something doesn’t fit in with their way of seeing or doing things, it’s wrong. Even those who say they don’t like to judge, do just that. It’s in their nature. They can’t help themselves. Even when they know it is wrong, and don’t want to do it. We try not to think about it, because the guilt is just too much sometimes. We are a selfish bunch. We don’t like to think that maybe the way we are doing something could be done a different, better way. Or that others may be more entitled to something than we are. Or that someone’s suffering could possibly be worse than ours. Admitting that means admitting that we’re wrong, or flawed, and we don’t like to feel that way.

Say for example, that you are out with your kids. Maybe one is Autistic, and is having a bad day. He/she is just too overwhelmed by all of the sensory input that is smacking them in the face everywhere they turn. So they get frustrated that they can’t make it stop. A meltdown ensues. Along the way, you may see one or two sympathetic onlookers. Others will look at you with disdain. Others still, will be downright offended. Judging you on your parenting skills. Telling you that you shouldn’t take your children out if you can’t control them.

Then you react. It’s like dealing with the school bullies all over again. Except you’re an adult now, and this isn’t a playground. The rules have changed. You have to be civilized. You have to resist the urge to punch them in the face for being ignorant jerks who have not learned how to mind their own damn business. Who can’t accept that people are not all the same. Or that you, and the child you are currently slinging under your arm while bracing yourself for their violent objection to you doing so, have just as much right to leave your home as anyone else.

So instead, you muster a “Sorry, my child is Autistic”, or “What’s the matter, haven’t you seen a meltdown before?” or “Can I help you?” with an angry, hurt look on your face. Sometimes your words aren’t so kind. So you curse and hurl insults at them while you try to muster some sense of dignity while dragging your screaming child out of wherever it is that you are. You’re angry, and hurt, and exhausted. In your head, you are judging those who are judging you. Thinking what insensitive a**holes they really are, and who the f**k do they think they are, anyways? They aren’t perfect, either. So why are they making a difficult situation even harder than it has to be?

The reason is simple. Why? Because people suck, that’s why. There’s no use in denying it. We can advocate until we are blue in the face for acceptance for whatever causes we support. But when it really comes down to it, how much of the response we get is just going to be lip service to get us to shut the hell up? Think about it. Everyone is different. We all have our own quirks, and likes and dislikes. There are different cultures and traditions, social classes, etc. Everyone is entitled to their own, as long as what they do doesn’t interfere with what we do. We are a very hypocritical, contradictory bunch.

It’s okay to be different. It’s good to accept and include everyone. How boring would life be if we were all the same? It sounds great in theory, but it’s almost impossible to have this actually become reality. Even those who are fighting for the same things as we are can’t agree. Like in the Autistic community. Those who are, or have children on the so called “higher functioning” end of the spectrum, get offended by stereotypes perpetuated in the media by those who choose to spotlight the struggles of those on the “lower functioning” end of the spectrum. Or, those who have children on the more “severe” end will complain and say that they are angry about how the other end represents Autism. Like it’s all fuzzy and warm, and sparkles and rainbows. Or  they’ll say that it isn’t really Autism. That they have no idea what it’s really like to deal with the “real” thing. Again, it’s the whole mentality that nobody is allowed to feel anything that we don’t. Nobody’s suffering is worse than our own. Nobody is allowed to experience the same things differently than we do.

If we really want to put and end to injustice, prejudice, bigotry, etc in our world, we are going to need to change ourselves. Which is not something that will be easy. Humans don’t like change. If we are to be honest with ourselves, we must admit that in order for true acceptance and inclusion for all to exist, literally everyone is going to need to change the way that they view the world and their fellow human beings. Everyone. Including ourselves. It’s not a very pleasant thought, is it?

Why April is the hardest month

April, as you may know, is Autism Awareness month. Time to flood social media with posts about “Different Not Less”, how many children are diagnosed with Autism as opposed to previous years, etc, etc. It’s when the anti – Autism speaks campaigns come into play,  the anti-vaxxers come out of the wood works, the arguments over whether to “light it up” blue or red, “colour the world”, or to “tone it down taupe” begin yet again. Not knowing what to post, or not post is so frustrating. No matter what you post, someone disagrees.

For some, to be an Autistic adult being inundated by a constant barrage of “cause and cure” propaganda  or (hopefully) well meaning posts from non-Autistics about awareness and acceptance (which make us feel like we are broken, damaged, or like we have to remind people that we are people too), can be exhausting. It’s easy to forget sometimes that Autistic children grow up to be Autistic adults.

To those who are not part of the Autism community, they have no clue what it’s really like. To be caught in the middle. To not know who, or what to support. Nobody likes functioning labels vs they are necessary for support. Talks of what therapies are and aren’t good. Dangerous “cures”. Anger over people even suggesting that Autistics need “curing”. Debates over Autistic vs person with Autism.-is it a part of who they are, or something they have? People arguing over whether it’s a condition, or a disorder, or a disability, or none of the above.

There is also a division between #ActualAutistics and “Autism Parents”. Those on the Spectrum feel that parents shouldn’t be called that unless they are in fact, actually Autistic. Others say that as parents of Autistics, they are entitled to the title, because they live with an Autistic person every day. Their every waking moment revolves around their Autistic child, so they feel that the title is deserved. Then there are those who are both Autistic and parents. Adults who may be “higher functioning” themselves, but who may have children on varied levels of the Spectrum. With so much division in the community, it is hard to find their place amongst it.

We are fighting for our children to be accepted and included not in spite of their Autism, but as human beings; yet we can’t even accept each other within the community. It is full of drama and cliques. It’s like being in high school all over again. We are so busy arguing over semantics, politics and trivial matters that we forget what we are really trying to do.

Our children (and in some cases ourselves) are not defective. They are different. Their minds are wired in a unique way that makes them see and do things differently than others. Do they have challenges and struggles that we hate to see them go through? Of course. The thing is, they are trying to adapt to a world that wasn’t made with inclusiveness in mind. It was made for non-Autistics. All we want is for the world to be safe and welcoming for everyone. Autistic and non-Autistic. For those with disabilities, and those with “different” abilities.

We need to stop fighting. It’s unnecessary. We ALL have the right to our OWN opinions. To say what we honestly feel. Without being judged by others. How can we ask for others not to judge us and our children, if we can’t stop doing it to each other? Unfortunately, nobody is going to agree with you 100% of the time. You will always have a critic, and someone will always be offended. At the end of the day, Autistic or not Autistic, we’re all people. We all deserve to be on this planet as much as anybody else.

 

 

 

Guest Blog: The Hardest, and The Best Decision I’ve Ever Made

[Blogger’s Note: This blog entry was written by a friend, who wished to remain anonymous, for the protection of privacy for her family and her son.]

Parenting is always difficult. Sometimes it’s the hardest decisions that turn out to be the best decisions. This is about how I knew my son needed more help than I could give him and that I couldn’t do it alone. As parents, many of us will have to ask ourselves about our children’s options. When is it best for for our children to live in the community, but not with us? A lot of us have gone through this and many more of us will at some point. Our kids deserve to live as happily and as independently as they can, but how do we know when and where that is? Parenting a child with special needs can make us feel isolated. Whatever decision we make as moms and dads, I want parents to know that they’re not alone! We make our decisions with the best of intentions and the most hope for our kids!

About three and a half years ago, my then 15 year old went through a “crisis”. He is autistic, non-verbal, doesn’t type or communicate well, he has intellectual disabilities, and now epilepsy. I knew that I had to reach out and seek help in order to help him, but I had no one to turn to for advice or experience. I didn’t know anyone who had been through this before me. I knew I’d be judged. It’s inevitable in parenting, and especially special needs parenting, someone will have an opinion. Sometimes it’s a relative who has all the answers. Sometimes it’s someone on the internet who has the solution to your individual situation. You should or shouldn’t medicate. You should or shouldn’t try this therapy or that treatment. Their experience with autism, or any other condition, is yours. My son and I had to reach bottom for me to not give a shit and do what was best. I placed him in a “crisis” placement through our state’s agency that coordinates services for people with disabilities. Since then he has lived in a group home during the week and at home Friday through Sunday.

I knew his crisis was bigger than what I could handle when he was breaking windows, eloping at home, school, and his after school program. He began being aggressive, something he never had been. He was also putting himself in horrible danger. Even though he was in a harness, he somehow got out and bolted from his school bus. He had such a meltdown at school, throwing furniture, it took four male adult staff members to restrain him. It was during a no-demands moment. He would literally go days without sleeping in kind of a manic state. One of the issues in our decision to label it a crisis and request the help was that we live about 35 miles from his special education school. I couldn’t transport him safely and with our urban traffic, it could mean a 2 hour bus ride with stops for other kids. It got so serious, I literally couldn’t be with him alone, and I was afraid of what would happen if I couldn’t ensure his safety. At about the same time, he had his first tonic clonic (gran mal) seizure. I believe the behavioral and psychological crisis and the onset of seizures were related. After the seizure, his psychiatrist called me and urged me to have him see a neurologist as soon as possible to start anti-epileptic drugs, as she thought the behaviors could be related to auras or other seizure symptoms. I’ll never know for sure what was what, but he is very stable now. He has gone back to being his happy, silly, gentle and kind self. He sleeps again. He doesn’t bolt or wander.

The “crisis” placement was an intensive group home placement with only one other resident. They got him stabilized from a psychiatric perspective and we worked on the seizures. The placement was great, because it wasn’t a psychiatric hospital, but they worked directly with a psychiatrist. They were experienced in helping kids of his functioning level. No other treatment team wanted to work with someone like him: non-verbal and intellectually disabled. The staff was great. We’d all meet once a week to have a good plan. Interventions were implemented consistently and he improved. He slept again, the aggression, self-injurious behaviors, and property destruction all diminished.

Here’s where quality of a home makes a difference and acceptance is critical: Once he was stable, he moved to another group home close to his school. It was a lousy fit, to be kind. The overseeing organization was good, and the intention was good, but the staff was not. That can turn something great sour. On the surface it looked fine. It was a beautifully kept home, but that’s where the fit ended for my son. His requests were ignored. Accommodations and recommendations made by their behaviorist were implemented spottily at best, but they weren’t upfront about that. Staffing was sometimes below what was agreed on for him. He was allowed to become so constipated he was “impacted”. A sinus infection was ignored. We’d argue about whether he needed medical treatment. It always seemed it was his fault. Don’t people know that being in pain and being ignored will make anyone act out?! So will not being accepted as an individual with individual needs. Behavior is communication. He sure did act out. He was given a 30-day termination aka eviction.

My son was so fortunate that he had a fantastic state social worker who went out of his way to find a perfect home. The social worker knew the owner and knew that it was well run. My son has been there on the weekdays for a year. It’s about 5 miles from his school, with no freeways. The owner is wonderful. I trust the owner as much as anyone other than myself or my husband. The staff are caring and interact with the residents. They say what a sweet and gentle person he is. They take the young men on hikes, out in the community and to the public recreation spots. Honestly, they are out more than we were. My son has grown more in the last year there than he has for several years before that. Developmentally he’s doing things I thought he couldn’t. His “behaviors” are down. He doesn’t need to communicate his frustrations through behavior. No, his behaviors aren’t perfect, no one is perfect, but the difference is respect. If I’ve learned anything from this, it is that I will always speak up the minute there is a problem, not because I think everyone is out to get my son, but because it’s my duty. I’ll follow my gut. Had the social worker not known this was a good fit, I would have brought him home. I was making plans to do that. I won’t let anyone throw him under the bus, so to speak. I’ll always fight for him. There will be good and bad placements, but I’ll never assume anything again. Speaking up keeps people on track. Care giving isn’t about looking good, it’s about doing good. Most of all, he deserves to be treated with the same respect and dignity as anyone else! All people do, regardless of disability or diagnosis!

I have kept this very private, but it’s a story that needs to be told. I’m doing this anonymously because I don’t know how much he’d like told. I want to protect him. Even though my son cannot live independently, I believe he is happier in this situation. He has an opportunity to be more autonomous than he would otherwise. When we made the placement, I got a lot of negativity from some people. “Oh I could NEVER do that.” from other parents. Please mama, never, ever say never, you never know. All caregivers are not abusive. Some are and we need to protect the vulnerable. Keep your eyes wide open. I also got scolded for treating the co-morbid psychiatric diagnosis with meds. I had to get to the point where I just didn’t care what others might say. I have only him and my conscience to answer to. Even now, I don’t go out of my way to tell people about our decision. If someone asks about him, I tell the truth, but I like to be in charge of what I divulge, and there are a lot of people I don’t trust any longer. I want to protect him from internet know-it-alls who’d diagnose, treat and parent him. If we think about it, many older teens who are not autistic are also ready to move on and move out. My older daughter was ready to go away to college after high school. My son is more independent this way. Having him home on the weekends at home is completely by our choice. I want it that way and he looks forward to the visits. His medical condition was beyond my control. I couldn’t ensure his safety at home and I couldn’t stabilize his psychiatric state, but I remain close to him so that I can advocate for him. I teach him to advocate for himself to the biggest extent he can. I am so grateful for the progress he has made!

I’m sharing this because I completely feel for the heart wrenching decision so many of us will have to make for our children. It may not be that our children are in crisis, it may be that as we age we can no longer care for our kids. Whatever our children’s or our situations, I want parents to know some things: I want them to know that they are not alone! Others have had to make the same choices. It’s never easy. We all doubt ourselves. Whatever choice we make, it doesn’t matter what others think. I also want parents to know that they should trust their guts. I want them to know should not stay silent when something fells wrong. I want parents to know that their decisions aren’t perfect, none are, but even so, they can be the right decisions! If my decisions were perfect, I’d win the lottery and start my own wonderful community where all people would fit. Someday that dream will come true. In the meantime, here I am writing this. I’m here to say that our decision about our son’s living situation was the right one for him and that it was the right one for us as well. He’s come so far, and so have we. Don’t give up hope!

World Autism Awareness Day

So, as most of you know from the assault of posts on Facebook and other social media today, it is World Autism Awareness Day. Or, as almost half of my friends on here see it, every day. We are the ones in the “Autism trenches”. There are so many things I could say, but there just aren’t enough hours in the day to possibly say it all. However, here is an abridged version:

We are the people who are the cheerleaders for our kids and fellow parents of those on the Spectrum; the therapists for our children (when we can’t afford professionals and just do what we have learned through the little bit of therapy we have had provided for us, and through what we have learned from others and the internet); the chauffeurs to the various appointments (or in my case, the ride arranger); the ones who are up all night when night terrors strike, or because our Autism kiddos have an internal clock all their own.

We are the ones who endure countless dirty looks when out shopping and our children have yet another meltdown; the ones who cringe when we see the school’s phone number on our call display. We are the fixers of many broken things; the cleaners of many, many messes; we are the cooks of several meals a day, since everyone eats something different.

We are lonely. We are isolated. We are overwhelmed. We are terrified of what the future may hold for our children, or what will happen to them if something were to happen to us. We worry, a lot. About so many things that many people take for granted as a given every day. In our lives, very few things are certain. We also are the ones who love our children more than it is humanly possible to love another human being.

We live and breathe Autism every minute of the day, every single day.
Some days are a shining success; where we are overjoyed at the little miracle that we have just witnessed. More days than that, we struggle to make it through – struggling to compensate for sensory issues and prepare for outings to avoid massive meltdowns; struggling to understand why our children think and act the way they do.

We understand the sensory issues. We understand the need for structure, routine, sameness. What we don’t understand is what triggers it all. What is it that they see that frightens them, or repulses them, or frustrates them so? No matter how many triggers you identify, there are always more left to discover, or more around the corner.

We struggle to explain to our children the difference between reality and fantasy; the difference between lying and the truth; the rules of safety and society. We try our best to explain to them why the other kids at school won’t play with them (or why/how they are frightened of them); why others just don’t seem to “get” them.

There is so much about Autism that we don’t understand. That doctors, parents, even those of us on the Spectrum ourselves, cannot possibly fathom. Today is a day that we need to make others aware about society’s lack of awareness for a condition that affects 1 in 68 children in North America (that is the current number of children that the CDC are telling us are affected today). We have so much more to learn.

I just wish that there didn’t have to be a day to promote it; that people would open their eyes and their hearts and take the time to try to really understand and learn. Till then, I will just try my best to do my part to help others be aware and try to understand. Above all, no matter how tough it gets, I will hope.