Last summer was great. My wife and I and our two daughters went to New York City for several days and saw a Broadway play. We went back home to Newport, played on the beach, and went for some great boat rides. We went to Seabreeze Amusement Park a few times, to the zoo, to the movies a lot, and ate ice cream constantly. Good times.
This summer stunk. We sold our house, registered the girls in a new school district, bought two smaller houses, packed up most of our things, and moved into two separate houses. No vacations, no trips, much less ice cream, no Seabreeze, no movies, no beach. The odd part is, it’s not a divorce, it’s a peacekeeping mission. The relationship between my two daughters has become too potentially dangerous for them to live in the same house any longer. And so they don’t. We’ve been reminded by numerous doctors and professionals for years that we’ve been playing with fire by continuing to expose our younger daughter to her sister’s violent episodes. We’ve known that all along, of course, and my wife and I have talked for quite a while about the possibility of splitting the kids up. But there was a huge difference between talking about it and actually doing it. Taking that next step – transitioning from talking to doing – was paralyzing, heartbreaking, and gut-wrenchingly difficult. I know that I could never have gotten to that point on my own – it took my wife’s initiative and courage to make it happen.
Regan is 11 and has significant special needs. She is amazingly high-functioning, incredible, and a true-to-life angel. But she is also volatile, intermittently aggressive, and unstoppable when she has an episode. Her younger sister, Grace (9), has been a target and an outlet for Regan since before Grace could walk. Regan has made Grace’s life very, very difficult, full of stress and fear and pain – emotional and physical. My wife and I initially watched Grace grow into a happy, outgoing, talkative, fun-loving child. And we have more recently watched her grow into a depressed, withdrawn, nervous, angry, self-loathing young girl. The horse that she used to ride for hours every day with a huge smile eventually became just another source of sadness and emptiness and a symbol of her trying to escape from her sister. She still went to the stable each day but would spend more and more time alone behind the barn crying. And one day she just picked up her saddle and bridles, unpacked her locker, brought her equipment home, and cried for days.
Regan has benefitted from countless hours of therapy, special programs, special schools, hospitals, specialists, medication, and so many other resources. Everyone’s attention has always been on Regan, and nothing (nothing!) has been spared to ensure that she gets what she needs to help her grow, develop, cope, and work towards a life of independence and fulfillment. I thought we were doing that for Grace all along too, but now I know that she may not have seen it that way. I’m sure that for every ounce of anger, fear, embarrassment, and disgust she feels for her sister, she has an equal amount of resentment, jealousy, and confusion about why Regan has always had different rules, different expectations, and different consequences than she has. There is a lot of damage to undo before we can hope to move forward, before Grace learns to feel good enough about herself that she can come to terms with her sister and her situation and begin to truly understand the complex hand she has been dealt. Moving them into separate houses is just the start.
Many years ago we were warned that we would likely have to address serious concerns with Grace at some point, because the siblings of children with autism can suffer severe emotional difficulties due to the unusual dynamics in their families. Adding the physical implications of having Regan as a sister, along with its accompanying fear and anxiety, have made Grace even more fragile. We can’t fix Regan, but we know we have to do everything in our power to fix Grace , to make her realize that she is special, that she is incredible, that she is not what her sister makes her, but rather what she makes herself. And under no circumstances will we as parents allow her life and emotional state to crumble to pieces while she perceives that we do everything instead to help her disabled sister.
It is not just the child with the diagnosis that needs a parent’s help; siblings need your help just as much. Their emotional, physical, and mental wellbeing is every bit as precarious and at risk as is your child with autism. And it is every bit as important to see that it is nurtured. It is all too easy to believe that your typical child has things under control simply because she does not have a disability. Typical children can appear so much more “together” and in control of their lives simply by virtue of being compared to their socially and academically challenged siblings. It’s easy to get so caught up in trying to protect, guide, instruct, develop, encourage, and praise our children with disabilities that we may forget to protect, guide, instruct, develop, encourage, and praise our typical children just as much. Or possibly even more so, because in all likelihood, they have developed the perception that they do not get as much positive attention as their disabled siblings, regardless of how proportionately it’s actually doled out. Fifty hugs and high-fives are wiped away by a single frustrated raised voice. I doubt that it’s much different among all-typical siblings, but the inherent foundation of insecurity that exists in most siblings of autistic children makes it a formidable beast to fight, and one that has to be addressed directly and early and continually.
And so, strange as it may sound, we live apart as a family in order to create some stability for our children. It’s certainly not what we ever expected, and I can’t begin to explain how difficult it is not to see my wife and one of my kids every day. But we can see improvements in both girls already, and that encouragement makes it bearable. Every parent should have long ago given up the idea that their life is about themselves. We exist for our children now, and there is no better purpose. As parents we should be willing to sell our souls and eat fish heads to make our children’s lives better. I don’t want to live apart from my family, and I don’t want my girls to live apart from each other. But I do know that this is the safest alternative left to us without putting Regan in residential care (and there is no way on the face of this earth that my wife and I would allow that to happen until there is absolutely no alternative). Grace is happy, laughing, and smiling again, and it is wonderful to see. She misses her mom, and she even misses her sister now that she isn’t forced to be around her and subjected to her routines and abuse. But she reverts back into the same angry, frightened girl when she is around Regan for more than a few isolated minutes. It will be a long time before they can safely live in the same house again, because it will be a long time before Grace is comfortable enough about herself that she will properly understand her sister’s disability.
Difficult as it is and will continue to be, my wife and I know we made the right decision. And Grace knows that we are doing as much to help her as we are doing to help her sister. Maybe it wasn’t such a bad summer after all.