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.
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.