Updated: Jul 21
It may shock some to learn that we have another child. A girl. She is sweet. Loves all things Harry Potter and Cubs oriented - she can recall every detail in the book series and can rattle off the ERAs for Chicago's north side starting pitchers. She is an athlete, an avid reader and has a wonderful talent for writing...poetry, lyrics, stories...anything really. She started middle school this year. My memories from that time are a bit hazy. I am fairly sure that I blocked much of it out as a defense mechanism. I did not quite fit in the private school setting with my permed hair and extra 20 pounds. It was a bit rough. But it is for most kids, including my daughter. There is an uptick in academics, and social pressures are magnified by Instagram and the rest of the social media platforms. And there are hormones. At 42 I can now recognize that all these kids are just trying to figure it out (mean girls included). But, while my middle school days were tough, I did not have the added stress of having a sibling with a disability, which just adds an extra layer of "stuff".
We try hard. I am the coach for some of her softball teams. My husband has one to one activities regularly with her, like taking her to movies, as well as engaging her with old school cinema at home (I think our girl is the only 12 year old who seeks out music from the Rocky series). We have planned outings that are solely for her - concerts, introduction to Universal Studios, etc. Would we do all these things if we did not have a son with a disability? Hopefully. But I am sure that they would include her brother from time to time and we are very careful to not include him in these instances. She's on a swim team, tennis team, basketball team and softball team - that's a lot of games - and in those cases we do take our boy with us. At first it was hard but we learned to bring sound cancelling ear phones, various preferred items, and two cars in case we needed to extract Daniel from the scene. Our girl is trying to figure it out. Daniel's behavior can be embarrassing if you care about the looks from others, he can be unpredictable and our attention is always partially focused on him. It is just the way it is. As the other sibling I understand that there is anger with that internal struggle of - I don't like my brother or his disability yet I do love my brother and want to protect him.
And in the cases when Daniel should be punished or reprimanded there is the lack of understanding as to why we punish him differently. Kids with ASD don't do well with yelling or stern talking. For us, that leads to anger from our boy (and objects flying) or uncontrollable crying (followed by objects flying). There isn't a huge attachment to toys. So, if we take his favorite bristle blocks away...that doesn't have any long term effect. Our boy will just move on to something else. Time outs don't work, neither does logic on occasion. Most times, in the moment, we are just trying to get through it and look to find the teaching moment at a later time when he is calm. But, from a sibling perspective - all of it looks to be grossly unfair.
So, what to do? I don't think there is a magic bullet and hope that, like most girls her age, she will come to appreciate the situation as it is, and realize that we were always trying our best. It is such a delicate balance and weighs on our minds daily. We continue to encourage her to expand her network - both in terms of friends and activities. There is no limit to how large a support system can be...and support is key. We encourage her to write in her journal so that she can express herself without filters, and we continue to provide 1:1 opportunities so that she can have exclusivity to her parents. So, we are trying...and then we received Lily's report card. In addition to excellent grades it read "Lily, you are a standout softball player -- your catching, throwing, fielding, pitching, hitting, and mental skills are terrific. Most importantly, Lily, you are a supportive teammate who instills confidence in your peers through your actions as a leader".
My husband wanted to find something for our daughter that would be relatable. Given her love of reading that naturally led to researching for a book. Written by a young 10-year old who has a sibling with autism, "Autism Through A Sister's Eyes" fit the bill. It is an easy and short read and we know that our daughter appreciated feeling like there were others like her out there.