Evyn (Nicky's older sister) is an old soul. She is smart, intuitive, and protective of me in ways that are all far beyond her years. This sometimes makes it hard to remember she is still just a kid, much less a kid who has had a quite a few rough years.
Evyn's world: Middle school is rough for most kids and she hated hers. She is in her first year of high school and likes it much better. Her dad was rarely available for her, and for as far back as she can remember he made choices that kept him away from us. For years he was there some of the time, but starting 3 years ago he was gone almost all the time. This was a major factor in my decision to file for divorce two years ago. He now lives in
I talk to her and acknowledge how hard it must be to have a brother that always needs and gets attention. I know she understands that it’s not a choice it’s just one of the rotten realities of his disability. She understands he can’t be left alone, she knows he needs therapy, she knows he has problems sleeping because of his seizures and she knows it’s not his fault. She knows this is the hand we were dealt and we have to do out best to work together. With all that understanding, she is a kid and her the whole situation SCREAMS one big “NICKY IS FIRST” and she resents it. On a good note, she has begun to express her feelings and now says without any hesitation “I hate him” and “I don’t want to go anywhere he goes” and “I just don’t want anything to do with him”. I’m glad she’s not keeping it all inside. In many ways this seems like typical sibling stuff and I think it’s good.
She has always been a strong willed girl, an amazing brilliant strong willed individual. She has always had her own opinions and been very independent, which makes her a wonderful leader and not a follower. But now something new has been added to that will, and it seems to be a streak of stubbornness, that can only hurt her. She has come to a place where if things do not go precisely as she would like she shuts down. For example, on Friday when I picked her up from school, she handed me an invitation to a “Sweet Fifteen” party for one of her friends. The party was Saturday night, and she wanted to go and she wanted to go to the store and buy her friend a bird. I said, okay and we went to the bird store looked at birds, then I called two of Nicky’s therapist to see who might be able to watch Nicky at the last minute. Only one of the therapists were available and she could get to our house at 7:00. The dinner portion of the party started at 5 and the party reception began at 7. Evyn began to withdrawal and I knew she was disappointed. I recognized her frustration and shared with her that she had several options. I could get her there are 5 – so she could be there for the entire dinner – and it would be up to her if she wanted Nicky and I to come in. Remember she hates him and probably does not want her friends to see the creepy little brother. The therapist Chaundra, who Evyn really likes and is like a big sister to her could get there at 7. Then Nicky and I would go home or Chaundra could take Nicky home, her call. Me or Chaundra could hang out at the party. And a final option, she and I could just go out and see a movie or do whatever and Chaundra could baby sit Nicky. She hated them all and she refused to go anywhere. She went to her room. There was lot's of drama over me trying to get her to go, Chaundra talking to her, but no luck. This is a typical pattern in our house and I don’t really know what part is teen normal or what part is Evyn’s situation. I call it the zero flexibility factor...typical teen? Maybe.
For the past two years Evyn has been in therapy and I can’t tell you if it’s helping because Evyn really will not talk about her feelings in any depth. Most of her responses are either “Yes” or “No”. There's occasional tears when something is said that connects with her hurt. ...typical teen? Maybe. I sit in on most of the sessions and I feel fortunate that even if she does not know how to take advantage of the time to talk, she is listening and in time she will learn.
I have been sensitive to the realities of Evyn having a special needs brother for a long time. I try to keep balance, and I’m sad I can’t wave a magic wand and give her a typical brother with typical problems. I know Evyn has three major emotional challenges in her life right now, dad, brother and being a teenager. I don’t know what parts to attribute to what and when problems arise that’s frustrating for me. I do know that no matter what I do, she will, at least for now, feel like she is getting the short end of the stick. I really check myself to make sure that I'm not making it worse by letting my guilt for what's happened let her get away with things that will hurt her later. That's a rough one for me, because I truly feel bad for her sometimes, and I so want her to be happy. Typical Mom huh?
Lately, I have been talking more and more about how to get time for her and I without Nicky. We have talked about how we need to take advantage of opportunities to escape for a few hours, when they come up. We have talked about how even when we make a schedule things often don’t go as planned so we need to be creative and seize opportunities. She seemed to agree, but couldn’t put it into action.
So in response to my initial question “What’s normal and what’s worst because of her brother and dad?”. My answer is “who knows” and does it really matter. Most kids have some kind of challenges and all kids are different. The good and bad in life happens to all of us and all I can do is my best – whatever that means – to support my kids. I can embrace my circumstances and through action help them learn how to cope with whatever life dishes out.
If I can do that, Evyn will be fine. She will be strong and able to care for herself and if her special needs sibling was the vehicle that helped make her that way…so be it!
Notes to myself and others
- Remember how it looks for Evyn
- Remember to be loving and patient (when I feel helpless)
- Remember to be loving and patient even when she is behaving in ways that I don’t think help her – let her learn.
- Remember to notice the things that are going well (like her grades)
- Childhood depression is a real thing – keep my eyes open – it could happen
- Remember she is the kid and it’s up to me to guide her
- Remember no matter how smart she is she is still a kid
- Give her special attention whenever and however I can
- Don’t feel guilty, if I’m doing the best I can
- Know that she is doing the best she can
- Remember that this is not an easy time, so the responses are natural
- Try to not get frustrated, it doesn’t help
- She is a great kid and all the good is in there even when she doesn’t let it out
- She knows I love her – that’s why she feels safe enough to give me a hard time
- Watch her and give her options for caring for herself