Wasted Time Revisited

I try to focus on the positive here. Even when it’s hard to find a “silver lining”. In August 2015, I wrote about how Em was angry about Wasted Time. I then reworked it in July  for Facebook to show how far she’s come in a year. It’s time to reblog it here… this is one of those pieces worth reposting *with a few tweaks* as it shows Em’s perspective and thoughts along with other things.

It’s a little long, sorry. Please read this.

I’ve posted both the original and commentary on where she is now.

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The last few weeks have been hard. Extra hard on Emelie. Some things have had her re-evaluating her life. At 14 there isn’t much life to evaluate, but to her, it’s a lifetime. She has been looking at relationships and connections. She’s been thinking about people she loves and adores. She’s comparing herself to her peers.

She will always be re-evaluating. She will always compare. She still thinks about relationships. She hyper focuses on it sometimes and it drives me crazy. I can’t explain to her how to fix things that aren’t broken, and that people can’t be made to “love” her or “like” her. I can’t make people she longs to spend time with her realize how desperate she is for their love, affection, understanding and time. All I can do is be HERE for her.

That has led to a lot of anger and frustration. She has realized just how much her autism has affected her interactions in life. She has realized how her life has been affected by so many different factors. So much of it led to what she called “wasted time”. You know what I’m angry too. I’m not angry at her. I’m angry with her and for her.

I wish I could say we are past the anger phase. It’s more than anger, though, it’s a rollercoaster. She’s angry. She’s sad. She’s frustrated. She doesn’t want to dwell on the past. Yet, the past keeps repeating itself and she is trying so hard to find her peace. The past is the past and she’s learning to accept that we can’t change it but we can learn to accept what it is and how it’s shaped her life. Both for the better and the not so good. I just don’t know that she’ll every be able to let some of it go as some things have and shouldn’t have happened.

She’s angry first and foremost at the psychiatrist she saw for four years. The psych swore up and down that Emelie did NOT have autism. She gave Emelie a diagnosis that put Em on a path of medicines that didn’t help her and missed interventions. Em was begging for “help” and pleading for someone to hear her. This doctor ignored the signs. She blatantly refused to acknowledge even the remote possibility. Em remembers it. She said it affected everything since. I had to remind her it wasn’t all bad but mostly, it was. It was wasted time in the sense that there was a struggle to understand the whys and help her the best ways possible.

She’s a better person than most of us would be in her shoes. She’s trying so hard to let this particular thing go. I think she’s still angry but more sad that this woman wouldn’t listen. That she ended up with medications that she should never have been on but understands why she was. The more she reads up on how girls on the Higher Functioning end of the spectrum are misdiagnosed, and often given the same dx as she received, she feels less alone. She realizes there is a long road still to be traveled for girls on the spectrum and the diagnosing process.

She’s angry for missing out on things in life because she couldn’t cope. From family functions to going to places that everyone talks about. She struggles with the idea that she hasn’t connected with family members the way she thinks that they should. That has led to a distance now that she feels cannot be regained. In some ways, she blames that wasted time on not bonding with relatives that she desperately wants to see and spend time with.

This one is tough. I used to sense more of a disappointment and sadness. Now she is angry. She doesn’t like to talk about this because it reminds her of her struggles. Then we point out how far she’s come and she will entertain a brief conversation. Anger? Yes. It took many years but now she is hurt and angry because she wants to be loved and accepted as she is and feels that unless she fits a certain image or persona, by certain people, she will never have the relationship she does deserve. This is something that bothers her and will trigger meltdowns and tears.

She’s frustrated. She feels like time has slipped away from her. Emelie sees how her bond with Christian is strong as well as us. Yet, she feels that her bond with Christian suffered during those years when we didn’t understand what was going on. She struggles with the wasted time of yelling and fighting and melting down and how it pushed them apart. She struggles to see the good times. BUT she knows that WE love her and will always be here for her.

There is a lot of repair going on here. Christian is 18 and not as much a part of the picture. I think they are in a holding pattern but if push comes to shove, she will reluctantly admit that he is better than he once was. However, he is trying more to give her the support she needs, when he can. Patience? Neither of them are there yet, but I see it happening. Give it 10 years or less. The respect is coming slowly now.

She has other relationships she looks at and things about how they seem to be driven by “fear” and not “loving” Em because she’s “broken”. She has lamented on how the other kids in their lives weren’t broken therefore more lovable because of her. Sadly, in those relationships, it’s hard to show her otherwise. They are relationships that shouldn’t be like that but appearances are hard for her to look past. The wasted time of “fear” has led her to question those relationships and love.

She’s upset. While she realizes she’s not “broken”, she’s at the point that she doesn’t care anymore if people who should want her in their life do or don’t. She’s done being an afterthought or feeling like a “forced” person in their lives. She tells me all the time that she is trying to let it go. Actions speak louder than words and both are silent on so many fronts. She is putting the past in the past and moving on. With them or without them. Their choice. However, there is such a deep pain that is visible. The tears and anger break our hearts for her. All we can do, be here. Pick up the pieces we can. And fight for her. If we don’t, they won’t.

In the span of things, she feels broken, unwanted by so many, unloved by the few she deems SHOULD love her, forgettable so easily, and she’s fighting back. She’s struggling to figure it out. How to get past that wasted time frame and move forward. She ticked off and she’s bound and determined to not lose out on life to any more wasted time.

She’s a determined individual. If I had half the knowledge that she has at almost 15 years of age, well, I’d have been a much happier individual. She still wants love. She still wants friends but she’s trying to be strong and figure out how to make friends that are there when you need them. And there is progress. She has a few friends who are there for her and one girl who has prioritized Em and made her feel important to SOMEONE.

This isn’t necessarily a bad thing. It could be a very good thing. She’s realizing not everyone is going to see her as “perfect” just the way she is; perfectly imperfect. Rather, she’s learning how to silence her critics. Including the loudest one of all, herself. We’re here to help her and guide her but she’s got to come to terms with it. Just like we did, 3 years ago when she got the RIGHT diagnosis that set her on a whirlwind course of change and understanding.

She has learned quickly the best way to silence the critics, is to be honest with herself and us and be true to who she is. She is pushing herself more. She wants to keep lines of communication open and she realizes that sometimes we need to discuss situations to make sure there is a true understanding since she still struggles with separating frustration/anger/extreme sadness. We keep doors open for dialog.

I have faith that she can do just that. It’s going to take time. That time won’t be wasted. It’s going to take love. We have plenty of it to give. She’s going to need support. She’s got over a thousand reasons to embrace that support system that adores her. Mostly, she’s just gonna have to learn to be herself and love who she is. Those that love her and want to know her, they’ll be there for her by starting to make sure she knows it.

It’s a small support circle. She is making progress and every day that happens is a step forward. Even on days she slips and regresses we remind her that tomorrow is a new day. And for the record… she doesn’t hate her autism. She’s just frustrated about the struggles.

Overall, I think that the one constant she has is being frustrated over her struggles. I hope and pray one day she can look back and read all this and realize just how far she traveled across the board *emotionally, psychologically, physically, mentally* in a short period of time. That and she realizes just how much we are here for her. No matter what.

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Who Changed?

I did write this originally for our Facebook page. However, I felt so strongly about this I needed to post it here too.

This last week and a half I’ve had so many questions and heard so many things, it’s been intense. So, I figured we’d address the “elephant” in the room and put some things into perspective. This could get a little long, but please read it because I think it says a lot about us, our culture and society as well as our perceptions.

This could even be classified as Em’s own personal “social” experiment if you’d like. She’s been asking us for over a year to allow us to let her dye her hair black. She didn’t feel like she was taken “seriously” as a blonde. She felt like she was lost in the crowd and never heard. And sadly, I think she’s proven to herself through this change how right she may have been.

I’ve heard she’s changed. I’ve had people tell me that they are worried about her. I’ve heard she’s not the same sweet girl she used to be, that she’s gotten very vicious and sarcastic and her humor and style has become very dark. The whole reality is though, she really hasn’t changed as much as people seem to think. The changes are so minute they shouldn’t have made a difference but they did because suddenly people’s perceptions of her changed and they started paying closer attention to her.

1. Her sense of humor has always had some dark, twisted and somewhat sadistic undertones. It’s just more noticeable now that people are listening and watching her.

2. She’s still just as sarcastic as she was before. And the witty comebacks that seem vicious at times have been there far longer than people caught. She grasped sarcasm and embraced it fully. Sometimes we have to reign her in but part of her autism is learning social boundaries. And she is still working on that.

3. She isn’t changing into some girl who wears only black and starting to wear a leather jacket. She’s had that jacket and wore it for well over a year. Dark colors are her chosen colors on average but she loves bright colors too. It depends on the day, just like anyone else. However, once she dyed her hair, she wasn’t just a “cute” girl in a leather jacket. She has this image of a “tough” girl in a leather jacket.

4. People used to look past her so never realized she muttered under her breath and talks to herself. Sometimes she does it to remember key information or answer a question that she’s not 100% sure she’s got right. Sometimes it’s also to remind herself to use her coping skills. She’s always done it, but now she stands out to others.

5. She still has the same hopes, dreams, fears and insecurities. The difference is now people perceive a confidence in her versus a timidness. There is a slight change in that but that was more about her tired of being a “wallflower” ignored. And it’s more frustration and calculated “confidence” versus a true confidence. Fake it until you make it kind of thing. And that was actually starting before she dyed her hair. As people NOTICED her that fueled the idea of being heard.

6. She still has a deep love of nature, animals, and justice. Her three passions.

7. Sensory issues are still issues that she deals with daily.

People think she has changed. She hasn’t changed. What’s changed is that people now notice her and she stands out. She doesn’t fade into that cute little wallflower. She’s shocked them into to noticing her.

Before, she was this cute and timid blonde who faded into her surroundings, even when she was screaming out for people to notice her. Now, she’s perceived as this fierce and fearless girl who doesn’t care what others think.

And the crux of the matter comes down to she’s both. She’s timid in how she feels inside. She’s trying to embrace and push herself into society. And when she did so before, her voice was lost in the crowd. Now, this tough gal persona, helps her voice be actually heard ~ for better or worse. She does care what people think. She wants people to realize she’s there. She wants people to reach out to her.

Yet, this isn’t something just limited to Emelie. How often do we as a society ignore the timid and meek looking individuals? We run over them with our own ideas and thoughts and squelch their voices. Yet, those who look like “trouble” is brewing or fierce and ready for a fight we listen to and even steer clear of them. They have a voice and it very often gets heard.

Look around you. There are many of both sides of Emelie out there. They both deserve to have their voice heard and be taken seriously. They are two sides of the same coin. And they very often are feeling lost and changing the hair color or shocking people around them shouldn’t be the solution. We need to draw them into the fold and make sure they feel loved being who they are.

~  Jenn ~

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Holding The Deep Breath

I use breathing techniques to control my anxiety. Em uses it too. I’m usually pretty good about being able to cope and deal. However, where my children are concerned, my anxiety shows more. Especially with Em. The unknown. The uncertainty. And still trying to show her we believe she’s capable. Fine lines and balancing acts.

You see, kids like Em don’t stay small forever. They grow up. They become teenagers. They eventually become adults. Depending on where they are on the spectrum determines a lot of their ability to live independently or not. And in some cases the co-morbid diagnosis that they have play strongly into how they function. Sometimes leaving parents apprehensive as to where their future is for them.

Emelie isn’t black and white. She lives in a gray area. She very well may live and thrive independently as an adult. In fact, she more than likely will. However, there is that little rain cloud of wonder that screams “what if she can’t”. Once you let that little cloud in, the doom and gloom starts and the “what ifs” start running around your head. Shutting them down means having a “plan” in place to handle those what ifs.

That means having to take that deep breath, hold it, think positively but purposefully and exhale. It means addressing those concerns head on. What if Em can’t hold down a job? What if her dreams don’t come true? What if she fails? What if she can’t live on her own? Will she be able to take care of herself? If not, then what?

We have to proactive and while we NEVER want to assume the worst, it’s a double edged sword. We can’t let go of that anxiety without a plan of how to handle the unknown, best and worst case scenarios. We can’t embrace and hope the best without addressing the worst. While we never hope we have to implement any of those “nets” we consider, the reality is, life is unpredictable on a good day. For these individuals that unpredictability sometimes offers more challenges for them than they can handle.

In the end, whatever will be will be and I have hope and faith that she will thrive and succeed but sometimes… I have to prepare in case. As her parent, my job in life is to watch out for her and protect her, as much as I can. Sometimes, that means letting her make mistakes and “fall”. But sometimes that also means stepping in to lend her an hand and help her find her way.

Kids don’t stay little for long. And Autism doesn’t change that. It only changes the services and people willing to step up and help. Programs and therapies become more scarce. Understanding is strained and often lacking. And at the end of the day, they are still struggling and finding far fewer people to help them or be compassionate and understanding.

We need to do more for these individuals who will age out and need more care. We need to do more to support caregivers in general of anyone who has special considerations. We need programs to help them find their “place in this world”.

And these are often the things I find my nightmares about or things that will keep me up late at night.

Being You…

So, I thought about where to start to get back on track. Oddly enough, I found inspiration from a quote that I stumbled upon. It bridged two worlds. Both my past and Em’s future.

When I was Em’s age now, I fell in love with reading stuff by Shel Silverstein. So for me to stumble across this quote was irony at its best. This particular quote was one that my mom also had found when I was around Em’s age and shared it with me. She taught it to me. She drilled it into me. I find it very heartwarming to know, I’ve taught Em this as well. As well as stressed it to her.

Listen to the mustn’ts, child,
Listen to the don’ts –
Listen to the shouldn’ts, the impossibles, the won’ts –
Listen to the never haves,
Then listen close to me.
Anything can happen, child.
Anything can be.
~ Shel Silverstein

So many times we all limit ourselves because of a label, something someone else has said or made clear what they think about us or even we let our self-doubts stand in our way. We find ourselves in a rut or a comfort zone dreaming of things what we wish or want to do. Or like in Em’s case becomes a need to do. And we don’t or won’t. Sometimes we need that gentle nudge or push.

We become anxious. We fight fear on two fronts – fear of failure and fear of success. The unknown dream or goal will have a known outcome. Regardless of that outcome

Regardless of the outcome, there is an experience to be faced and lived. With Em, every experience contains a lesson for her. Sometimes the lesson is something as small as learning how to cope with the challenges she faces or believing in herself. Others are lessons about trust and learning to let go.

My point is this, ANYTHING can happen. ANYTHING is possible. Unless we learn to quiet those voice and attempt things ~ we’ll never know. For us, try is huge. If you learn something, it’s not a failure. It’s a learning experience.

Time to Refocus

I’ve gotten lost this last year. I’ve needed to prioritize where I write. I needed to figure out balance and how to approach things here and on our facebook page.  Psst! Check us out  at http://www.facebook.com/EmsJourney

I think I’ve figured it out. So brace yourself. The blogs are going to flow. I have some posts on facebook that I wanted to update and elaborate on here.

We are getting this resolved and starting back with the basics. For now, I’ll strive for 1 post a week. However, some weeks we may get more posts in.

Back to blogging. Back to writing. Back to the focus I always had strived for.

Just a Message

We live in a highly polarized society. Everyone has to be right. Everyone should be frightened into submission. Everyone should care if they offend someone else; no matter the personal cost. Sounds like we live in a society run by bullies. If you don’t feel the same way, prepare yourself.

Just reading that first paragraph you’d think I meant politics and hot topics. You’d be wrong. I’m talking about how it feels to live in the autism community and how it feels when people try to tell us how to raise our kids. It’s how we hear the same “theories” and newest “scientific reports” over and over again.

My favorites though are two that go hand in hand with bullying; specifically of our kids. One lies in the theory that autism isn’t “that” bad and we enable our kids by not “pushing” them hard enough. That the worse a child’s autism appears the lazier that parents are. The second lies in the idea that we need to “bully proof” our children by not labeling them and taking that “power” out of the hands of the bully.

Many times the people who have told me or people I know these things have very little understanding of what autism is and why we choose to “label” our child. Often there are no questions for us to why some of us have told our children their diagnosis and explaining what it means for them. Often we are willing to explain and answer or our kids are so that we can eliminate what could snowball out of control.

Recently, while trying to explain to a parent the struggles, our kids have from sensory overload and communicating she couldn’t wrap her head around it all. I tried so hard to stay calm. This person first tried to tell me why the labels are detrimental to our kids. So I tried to explain that while sometimes those labels do hinder our children with people not able to see assets in some cases or deficits in others they do empower our children. I also tried to explain why some people choose to share with the children their diagnosis and sometimes their peers in kind. Empowerment is so huge for our kids but they already feel “weird” in social settings and while it’d be great to “ignore” it, often the explanation of how their brain works is that AHA moment for them to understand. It’s also important for us to tread carefully balancing how they view this. We never want our children to feel “broken” or “unlovable”.

I tried to explain to her how our kids are like MACs trying to work with PC software in a PC world. Just like the software needs to be adjusted in order to work sometimes our kids need some help to adjust to what life is throwing at them. I tried to explain that our kids brains work differently. I even have gone into depth with people in hopes that understanding our kids will show that we are really up against the challenges.

I also have been known to lose my temper. I’m not proud of those moments. It gets old trying to help others understand sometimes; especially when they are dead set that we are just lazy parents who don’t give our kids enough XYZ to help them through the day or to fend off bullies. It’s a fragile balance we all maintain and there are days we struggle too.

The long and the short of it, compassion and understanding will take everyone far in life. If we all try to teach our children compassion and looking beyond “differences” bullying could disappear quite a bit. If we all quit getting offended by everything and try to be kind instead I think there would be less stress all around.

Let me be perfectly clear on one thing, though, we are used to battles that look bleak. We are used to fighting for our children. We are used to being the voice for them when they have none to use. As a parent of a child on the spectrum, you develop a wherewithal that allows you to be readily available to protect your child with a look. We know how to fight fights that need to be fought and if our children get bullied we will rally to find out a solution.

We try to teach our children about social norms and expectations but their little brains work so much faster than themselves sometimes that they do things on impulse without even realizing it until after the fact. We then work with them to right the wrongs if necessary and help them to understand it so hopefully it doesn’t happen again.

Bullying isn’t tolerated by many of us. And many of us are working towards change. Will you join us?

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Vulnerability and Fears

One of her greatest fears is never finding a guy to love her for her. She’s going to be fifteen and this unknown haunts her. She’s fixated right now that the guys don’t see her as pretty or beautiful. They don’t see her humor. They don’t find her intriguing. She is still so young yet she’s so afraid of her future. I want her to let go of that fear and enjoy her youth.

Our conversations lately show vulnerability that I see in many young ladies. With Em it’s even deeper though. She feels so misunderstood by her peers and that she stands out for all the wrong reasons. While she is trying to focus on being young and just not worrying about the future, she has this innate fear of being alone in the future. So, even though she is trying to put it out of her mind it manages to creep back in.

She is only now starting to voice these conversations; the “what ifs” and the depth of that fear are just coming to the surface. She understands that she may have to wait longer than she thinks is “fair” but she’s afraid it’s because of her autism and anxiety. She’s afraid that who she is will chase away everyone from her life. She’s afraid she’ll have to settle for someone just to be loved.

It’s so hard to see this girl who is usually so strong be so vulnerable. When I think of all the potential situations she could face because of that vulnerability I want to protect her from all the heartaches and pain. Yet, I know the best way to do that is to continue to help her find her path. To teach her that she doesn’t need someone else to be happy or loved. That she doesn’t have to “settle” to be happy. We need to teach her to be happy with herself and know that when that guy comes along that is right for her; he will love her as she is.

Too often we see people get into relationships for the wrong reasons. Too often we hear of them settling. I want her to be happy. I want her to love and be loved. I want her to find the person who will love her and care for her and understand her. She’s not going to be easy to love, but are any of us when we put all of ourselves out there?

This is a message to everyone. The right person won’t try to change you. They will love you with all your flaws and imperfections. They will embrace you and love you as you are. They will cry with you. They will wipe away your tears. They will hug you and hold you when you are in pain or need support. They will laugh with you and make you laugh. They will be the one person that you find yourself smiling when you think about how they make you feel. They will make you feel special, even without trying. They will be there when you are at your worst and love you through it. And you’ll do the same for them.

I’m not ready for her to be so worried about all of this now. In the meantime, we’ll reassure her the best way we can. We’ll help her through this. Baby steps on her journey…

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