The Change, The Choice

There were hard years. 

Years.

I'm sure there will be more.

Devastating times when I wasn't sure how our family would move forward. How we would make it through one more day. How my marriage would survive. How we could continue to all live under one roof. Things happened I don't talk about publicly. 

There were many sleepless night. 

Tears. 

Anxiety. 

Fear. 

What would the future bring? 

Why me? Why my child? 

Why must we endure a life this hard?

Why must I watch my child struggle to fit in? Be accepted? Be happy?

We were exhausted. 

Angry. 

Betrayed by the universe, insurance companies, schools...friends. 

What had we done so wrong to be cursed with this affliction?

Autism. 

Why? 

Change happens slowly. Sometimes at an infinitesimal rate. 

A crack in those bitter feelings, here or there. 

The ability to see joy in the faces of our children. They find happiness in a different place, a different way, yet it's there. The darkness isn't as pervasive as we once thought. Our eyes are open, bit by bit. Sometimes they snap shut again, but we slowly begin to see the small slivers of light. 

We loosen our grip on the dreams made years ago, realizing we can't move forward without setting them free. We create new dreams. Different, yet important. 

Acceptance begins it's slow journey into our hearts and minds. The realization that none of us are ever promised a perfect life. 

None of us. 

That how we play the cards we're dealt makes the difference between love and hate. Joy and sadness.  

I can no longer fight my own children. 

I am not the victim of their autism. 

Their struggles. 

Their hardships.

Because, yes, life can be so.utterly.hard. 

But, autism isn't being done to me. Autism just is. 

I will help my children. Fight for them. But never, ever claim to be a victim of them. I won't sit around feeling sorry for myself. What does that accomplish? It just drags you deeper into a hole that maybe one day will swallow you completely. That's not the life I want, no matter how hard things get. 

I must be a champion for my children. Their cheerleader. The one convincing the world of how beautiful they are. That they are not wrong. Damaged. Worthless. 

I love them more than I ever thought possible. I will accept them for all they are, good or bad, easy or hard. 

I won't focus on the tough times. I won't look for heartache, but instead look for times of joy. Joy I can share with others. I will focus on the light, because it's there. Even when we can barely see it.

I will not be a martyr. I will take a long look at myself, and change what needs to be changed. Be honest about my part in my children's behaviors. I look back and know there were times I made it worse, not better. It isn't just about them. Their issues. It's about my issues, too. It's about treating them with respect, and not damaged goods. 

They are my children. 

Whole. Lovely. Mine. 

Raising a child with special needs is challenging. We must deal with more than others. Prepare for life down the road. But we cannot allow that to get in the way of enjoying them. What they bring to the world.  We must do what  needs to be done, take the extra steps we' are required to take, but without wishing for something else. 

Because, no matter what, that's not reality. Not how the world works. 

There is no magic wand. No time machine. No crystal ball. 

No one said this would be easy. Not by a long shot. But we can still make a choice. Take the path of fear, anger, sadness. Shaking our fists at the gods for the life we've been given. Finding the negative in everything that comes our way. 

Or, we can choose to see our children as the gifts they are, just as they are. Showing the world true acceptance. Showing our children unconditional love. Showing ourselves and our children how strong we are, and how different is never less. 

Two paths. 

Which will you choose? 

In Case I Wasn't Clear...

Murder is wrong.

Period.

I Want Her to be Proud

There's a reason I blog more about K than I do B. Sure, B just recently got his diagnosis, but he's always been the same kid. It's not like something changed just because he received a label, and I don't blog about K just because she's had one longer.

You see, B is happy. He is content, living in B-world, talking non-stop about dinosaurs, and planets, and giant squid. His friends love and accept him. He has his moments, and his rigidity is definitely at the forefront lately, but it doesn't weigh him down. He loves going to his social group, because "his friends are there!", and his self-esteem is as strong as ever. Sure, he has Aspergers, but it hasn't, as of yet, negatively affected him. Sure, other people get annoyed, but it's not about other people (and, seriously, Ben is a fantastic kid, so if you can't get past the Aspergers and sensory issues, move along). It's about how he feels about himself as a person. And right now, he feels pretty good.

For K, it is different. I think a lot of it has to do with her being female. Girls are so much  more intricate in their social groupings, even in preschool. She was left behind long ago, and girls are much less forgiving of those who are "different". It's why most of her actual friends are boys.

She has also struggled with low self-esteem for as long as I can remember. My heart aches watching her, as she tries so hard to navigate life, and is struck down at every turn. So much more is expected of girls, and feeling like you are never "right" takes a toll.

What I want most for K is for her to be proud. Proud of her accomplishments now, and in the future. For her to focus on the great things about herself, like her love of animals, her artistic ability, her sense of humor. To know that just because she is viewed as different, doesn't mean she isn't fabulous. That normal (however that's defined) is overrated. That through her struggles, she will gain strength, and there will be those who accept her unconditionally.

I want so much for other children to be taught by the school, by their parents, that different is not less. But, I am realistic. I know there are some who just don't care. Who would rather their child be the star quarterback, or head cheerleader, than a friend to my child. It's my responsibility to make sure my kids are proud of who they are. That they feel confident in themselves, and have a firm grasp on what makes them great. That way, when someone looks at them as not good enough, it won't matter. They'll know better.

Especially K, who I know will face more challenges down the road. I don't want the harsh words of others to pave her way in life. I want her to stand tall. Be proud. Know she has worth, and that she deserves so much happiness. I want that for all our girls. Especially mine.

Just Right

As you know, K started a new school about a month ago. After a long search, we found someplace I felt she would be comfortable. Tiny classes. The ability to take breaks, or do work outside of the classroom, whenever she needed. Understanding. People seeing her as a kid who wants to do well, and not as a kid who is trying to make life difficult.

She has been happy, and I have been happy.

But, I started to hear this nagging voice in my head. Can K really succeed at this school? There's no ABA. I mean, how can she succeed without ABA? There aren't incentives to change behavior. How will she do well without incentives? I felt like maybe it was impossible for K to succeed, have a future, without these things. She has autism! How else will she learn?

Then I realized something. For years K has had all those things. ABA, incentives, behavior plans. People structuring her day with rules and routines, barely allowing to make a choice on her own. Not respecting when she needed space. Forcing her to stay someplace, or do something, even when she couldn't handle it, because that is what's "expected". And guess, what? Things never got better. This is K's third program this year! Third! That doesn't exactly scream success. Not by a long shot.

I think we are so conditioned to think our kids need this therapy or that, we forget to stop and see if anything is helping. Or, if anything is hurting. And that's not to say that every kid is the same. It's about taking a look at your child, and seeing what is right for them. If things have been bad for a long time, or your child is such a ball of anxiety they can barely function, it's time to figure out why.  

I had a kid this year who was so consumed by anxiety, she never wanted to leave the house. Somehow, in my mind, I felt that she just needed more. More ABA. More structure. More therapy. Because obviously she wasn't getting enough if all she wanted to do was sit in her room, alone.

Now I realize it was too much. The pressure to change. Act differently. Make "better" choices. It took its toll on my girl. The fact that she fought me on therapy didn't mean she needed more, it meant I needed to back off, and let her voice be heard. That no one's opinion is more important than that of  my own child. Sure, she's an autistic 9yo, but she's also her own person, and I need to respect her as such.

This realization will also help me going forward with Ben. I won't make the same mistakes twice. I will be much more aware of what works, what doesn't, and what he truly needs. I don't care what the "gold standard" is anymore. I care about what makes my kids happy, and successful in their own right, not compared to their typical peers.

So, no, K's new school doesn't use ABA. She doesn't have a bunch of different sticker charts driving her behavior. Things aren't taken away when she doesn't meat the standard for "typical" that day. She is allowed to be herself, even when things aren't going perfectly. She isn't restrained, or put in a room alone. She is loved and cared for, viewed as a whole person, and not as someone who constantly says and does the wrong thing.

It's hard to break away from everything you've been told is "right", when it comes to autism. Taking the time to look back, and realize nothing has been "right" in a long time, gave me the strength to let go of everything I thought needed to happen, and see that my girl is happier than she's ever been. Sure, we still have more trying times, but now I am more open to seeing that maybe those times are caused by us trying to force K to be someone she is not.

She is K. She is autistic. She will always be autistic. It's time to just let her be. Maybe that's what she's needed all along.

First, Do No Harm

I have two children on the spectrum. Very different, yet much alike. They are who they are, and I love every piece of them. If I could literally carry them around with me in a kangaroo pouch, I would.

But, something has been drilled into me since receiving their diagnosis. That I have to help them. That I need to send them to this therapy or that. That society won't accept them how they are. That they need to change.

So I send them off to speech therapy, occupational therapy, social groups, counseling, ABA. In school, outside of school. Forget after school activities, we just have therapy. Even the fun stuff is not typical...it's fun stuff meant for those with autism.

I don't think twice about it. I'm their mother, and it's my job to do everything in my power to help them succeed in life. To be happy and independent. To find fulfilling jobs, and have fulfilling relationships. Because success is only measured one way. By what people consider normal. By the achievements of typical peers.

Lately, though, something has been bothering me. The fact that my kids, at every turn, are being told that they are wrong. That how they think is wrong. That how they behave is wrong. That being autistic is wrong, and they have to change who they are. They must fit into a specific mold, and if they don't...

Wrong, wrong, wrong, wrong, wrong. 

I can't fathom going through each day being forced to change who I am because I'm not "normal" enough. I can't imagine what it's like to set aside who I am as a person, so I can earn stickers and pick a prize. To memorize scripts of what it's like not being autistic so I don't get in trouble, or lose my favorite activity.  Allowed to be myself only when a cute picture can be taken to show "acceptance", or so my parents can claim they respect all that I am.

Even in small ways, we are telling people something is desperately amiss. It leads people to feel sympathy for parents when they kill their children, because those kids (and adults) were just wrong.

Worthless.

Empty. 

Incapable of thought. Feelings. Barely human. 

What am I putting out into the world about my kids? My kids who are my life, my loves. I claim to accept them, while spending every extra penny on things that scream, something is wrong here! 

We place the burden of acceptance on our kids. We don't teach their peers to accept them. We teach our kids how to be accepted. 

It's not OK.

I've seen what this year has done to my kids. My children who have been told in so many ways, by so many people, that they are not good enough. That they are bad. That they need to change.

And I wonder why they aren't happy. Why their self esteem is shot. Why they hate school.

The murder of Alex Spourdalakis not only devastated me, but awoke something inside me. The fact that because our kids are looked at as less, things like this continue to happen.

I am supposed to protect my children, but I now realized I've failed. I've inadvertently made my children feel as though they are not OK. I've allowed them to be around people who drill that into their brains. Not that anyone did anything malicious. We all thought what we were doing was right. It's what every doctor and teacher and professional told us to do.

But, we were wrong.

Wrong, wrong, wrong, wrong, wrong.

What we put out into the world about autism is why there is no help for our kids. Why people look at them like they aren't whole. Not worth time, money, care.

I really think it's time to take a good, hard, look at what we are doing, and why we're doing it. What we are conveying about our children. About autism. How truly accepting we are of our kids, and if we are doing more harm than good.

All I know is something has to change, because human beings are being murdered (abused, mistreated, silenced), and it needs to stop.

We need to start really presuming competence, and seeing a person, not a diagnosis. Teaching our most affected to communicate, making that a priority above all else. Giving them a voice, because they are people who deserve to be heard. 

We must look at our higher functioning kids, and realize how our words affect them. Even if they don't come out and say it, put yourself in their shoes. Say this, do that, act this way...all of it telling them they just aren't good enough. Even coddling them, lowering expectations and treating them with kid gloves, sends a message of inequality, not just to them, but to the world. 

I don't know all the answers, or how to be a perfect parent. Not by a long shot. I just want my children to know they are good enough. Worth as much as any one else. That I am here to support them, and keep them safe, but not change. Not fight. I am on their side. I will follow their lead. It's not about me, the parent, it's about my children. All of our children.

Your children.

And the people, children and adults alike (because autism doesn't go away at 18), who have suffered at the hands of their caregivers, who deserved so much better.

When Murder Becomes the Only Option?

Let me start out by saying, 100%, I do not condone any parent murdering his/her child, for any reason. I don't care how hard life gets, killing an innocent person is wrong. Period.

(Please read each link before continuing to read this post). 

A lot of us within the autism community first heard about Alex in this story. A young man left to languish at a hospital, not getting the care he required for medical issues, due to his autistic behaviors. It was heartbreaking to read about this mother's struggle to get help for her child. How could anyone allow a child to suffer like that? There were petitions and pleas for calls to be made to the hospital, begging for someone to help this child.

But, I admit, I lost track of the story. Life happens, and after the initial shock and outrage, it slipped from my mind.

And then this happened.

I thought to myself, is that the same boy? The same one that was locked away in that hospital for so long, not getting care (according to his mother). It couldn't be, I thought. It couldn't be the same child. His mother was fighting tirelessly for him. There was no way this could be the same young man I read about weeks before.

But it was.

And I felt sick.

I'll be the first to admit I do not know what life is like with a severely autistic child. That is not my world. I would never claim to understand the lives of these children, or their families. But, I know murder would never be an option.

What upsets me, too, is how this family was failed. And not just by the government, or the hospital. By members of the autism community, like me, who forgot. Who got lost in our daily lives, while Alex's story faded into the background. We want services for our children. Help for families. Yet, most of us do nothing beyond posting a story to Facebook, or writing a soon forgotten blog post. Blog posts and status updates don't help families. They don't help autistic individuals like Alex (I am in no way using the lack of servies as justification. There is no justification for what this mother did. The thing that matters is this boy did not get the help he needed, and that's not OK. It's about him, not his mother).

I'm ashamed that I forgot about him until yesterday.

I don't deny life was hard for his mother. I cannot, and will not, defend her actions, though. Alex was a person, not a diagnosis. He was a human being who deserved so much more, including not being forgotten about by his own community.

We can all do something. Write a letter (many letters!), contact our legislatures, do what we can to fight for kids like Alex. There should have been somewhere for him to get help. Real help. Regardless of what his mother believed, or who disagreed with those beliefs. It's not about that. It's about a person!

You don't have to buy a plane ticket to D.C. and march on Capitol Hill to make a difference. Maybe it feels like our voices won't be heard, like one person can't make a difference, but a lot of voices will, have to, make a difference. Our kids shouldn't be murdered. There needs to be help for them! Kids like Alex...for whom autism is a matter of life and death.

(I know Age of Autism is not a favorite site to some, and I certainly do not go along with a lot of what they believe, but they have several posts on Alex's situation that I think are important to read, just because they provide more specific information on his case. In no way am I looking for a debate on bio-med, or anything else. It's just gives a bigger picture of what this poor kid was going through. What he was going through, beause in my opinion he should be the focus. Not the ones who decided to take his life).

Here, Here, and Here.

One Step Forward...

Sometimes, when I look at K, like really look at her, I just see a 9yo girl. A 9yo girl who has come so far. Who has made progress by leaps and bounds. Who I can trust to take the dog on a walk down the street, or a bike ride to the "second stop sign" in our neighborhood, all by herself. Who talks about fashion, and wants to wear make-up. Who rolls her eyes at me, and acts like I'm ruining her life. Just a 9yo girl.

Then, something like yesterday happens. Perseverating over a boy at school constantly setting off a fire alarm timer (seriously, who's bright idea was it to make "fire alarm" an option on a timer!?). Having a giant meltdown because she doesn't understand why she can't attend a birthday party of one of B's classmates. A meltdown like I haven't seen in a while, where I am lucky our neighbors mind their own business so I don't have to deal with the police showing up, asking why my kid is screaming at the top of her lungs (not an exaggeration) for a half hour.

Or the days she withdraws from us, and wants zero interaction. When she tells us not to talk, and that she doesn't want to talk, either. Where her body just seems so uncomfortable in the world. The times autism doesn't allow us to forget, if only for a moment, it is here.

To some, autism is just a different way of thinking. Not a disability. Not negative. Just a difference. I'd be lying if I said I haven't tried to hop on that train, because it sounds pretty good. Then reality crashes in, and I realize for K, autism isn't just a "difference".

Being autistic, having autism (whichever she chooses down the line) has a negative impact on K's life. It just does, regardless of how wonderful some claim it to be. It has caused other kids to shun my child. It has caused restraints in school. It has taken her out of our community, to a private school an hour away. It causes her heart to break over and over, because she can't understand social rules. It causes her to lash out, unable to handle frustration. It causes her to be overrun with anxiety on a daily basis.

It takes my 9yo, who can do things similar to her peers, to suddenly take giant steps backwards. Always.

Earlier this year we had an IEP meeting where a comment was made in the context of discussing placement. Someone said that K will always be how she is right now, so where she is educated doesn't matter (ie, she can be in the substantially separate class forever, no big deal). I took issue with that statement. I want so badly to believe that K can be successfully mainstreamed one day. That it does matter where's she's placed, because the right placement now could positively affect where she is down the line. That no one can look at my sweet 9yo, and predict the future. That how dare anyone decide her life for her, or say she'll never learn how to cope.

But, the truth is, maybe I am scared they are right. Maybe for all the progress we see, there will always be steep regression. Regression that will keep her from being truly independent (which she wants so badly). With her peers. Within society. That autism will always have this impenetrable hold, regardless of anything we do. Any school she attends. Any therapy she tries, or med she takes. That as many times as I tell her how smart and beautiful and talented she is, she'll always "hate her life" (her words). You might want to look at autism as just a difference, but that's not K's experience in the world. And it's her experience alone that is authentic to her. No one else can speak to that. No one.

It's been a struggle for me as K's mother to watch lately. As she struggles between being a 9yo girl, with typical 9yo girl interests and attitudes, to being under siege by an invisible thing that won't let her just be. Of course autism isn't something I can separate from K, but it is definitely a difference that has interfered with who she wants to be, what she wants to do, how she wants to live.

K deserves, just like anyone else, to have a chance at the life she imagines for herself. Unfortunately, days like yesterday make it painfully clear how things aren't always in her control. The difference in her brain makes sure of that.

It's just not fair.

Autism isn't just a difference to K, it's a disability. That's the honest truth, regardless of how others would like to paint the diagnosis, or generalize how it affects everyone. No mother likes to see her child hurting, and that's my truth.