A little refresher from part 1 (unless you want to read the WHOLE thing here) – I realized after 9 months of blogging that I hadn’t really discussed my children as autism siblings. My autistic daughter (G) is my middle child. My older daughter (E) is three years older, and my son (J) is three and a half years younger. In part 1 I focused on E and her experiences, now I’ll focus on J.
By the time J was born we had already been through what was probably the roughest time in our lives with G. Sure there were hard moments ahead, but by the time J joined us the realization that something wasn’t “right” with G had already passed, the in-home therapists had come and gone (because she had started school and got her therapies there), the doctor’s visits weren’t as frequent and the terrifying medical tests were over and had all come back negative. Even though there were still many issues to confront, the most frightening ones were behind us.
Unlike our oldest, who had to adjust to a sibling and then adjust again to that sibling’s special needs, J has known nothing different in life. He was born into it. He’s learned to “go with the flow” from practically day one. G LOVED him from the moment she met him in the hospital (actually she loves all babies, even still). This was good and bad – of course we were happy that she loved him, but G loves ROUGHLY. “Gentle” is an extremely difficult concept for her, even now (although she’s much better). She was also having problems with biting and scratching people, not only as an outlet for frustration or anger, but to express excitement. We had to make extra effort to protect J from her. We rearranged the living room so that we could gate off the bassinet in a corner, and we found a “bug net” for his stroller to keep her hands away from him. Eventually as he got older he learned how to protect himself but for years we had to be hyper-vigilant whenever the two of them were together.
They actually ended up being good playmates for each other. Because G is developmentally behind her chronological age, for a while we even referred to the two of them as “the twins.” They played with (or I should say “used”) the same toys and we even had to buy doubles for a lot because they would fight. Around the time J turned six we started to notice him surpassing her in some areas. That’s when he first started to notice something was different about his sister. It took a while for the “noticing” to become verbal questioning, but that eventually came too. And my husband and I had to find words, just like we did with his oldest sister, to explain that G was “different.”
The word “autism” only appeared in our house in common usage in the past year. For the longest time G lived in ignorant bliss. SHE didn’t know she was different, and my husband and I didn’t feel the need to point out something to her that she didn’t see. But our oldest knew the word, and we ended up “giving” it to J too, so that he would have a name for what was different about his sister. Then it was only a matter of time until we had that conversation with G too. Now it flows easily.
J is 8 now and G is 11 1/2. They still play together, although J takes the lead on most of the imaginative play. G still likes to line up toys and play very simply, and sometimes J gets frustrated with her. Occasionally you’ll hear him say, “I wish I didn’t have a sister with autism,” but you’ll also hear him say, “I wish I didn’t have a sister,” period, as in wishing he was an only child – mostly when he doesn’t want to share or when things aren’t going his way – very typical sibling stuff. He knows there are things he does better than her, and for the most part he doesn’t “rub it in.” There are times when he helps his big sister, opening a bag of snacks, or a door handle (fine motor stuff is really hard for her). He helps me if I’m trying to get her to do something she doesn’t want to. For example, she doesn’t like the bedtime routine, but has a meltdown if she’s not “first.” So if she’s complaining about brushing her teeth, I’ll say, “Well, if you don’t want to then J can go first,” he smiles and she yells, “NO, I’ll do it!” and off she goes. He knows the drill.
I don’t know how much longer they’ll play together, how long it will be before he moves beyond her completely in terms of the kinds of toys they play with or manner of play. He has just started to get into video games, so it might begin there because as I said above, fine motor activities are very hard for her and she has NO interest in computers or video games. I guess like with all things autism, we’ll cross that bridge when we get to it.
*Since he’s only going into second grade the issue of his “special” sister hasn’t come up at school yet, although at the beginning of each year I always fill in the teacher about our home situation in case he brings it up.