Category Archives: Family

Sibling Angst

Aidan

Aidan: Why the heck, Nigel, is your stick in my room?

I overheard Aidan say this last night as I was walking down the hall, and I empathized. I, too, have found Nigel’s sticks in many places throughout the house, including the kitchen, the living room, the car, my desk, and my bed. Nigel’s stick obsession has probably been lifelong, and to the best of my knowledge, neither he nor anyone around him has ever lost an eye, thank God. I’m not sure where this obsession stemmed from, but it’s most assuredly not abating any time soon. And I bet one of the things he loves about Scouts is being able to handle sticks on a regular basis.

But the real reason I’m writing this post tonight is to highlight Aidan. He’s been feeling a little like second fiddle lately, aware of all the writing I’ve been doing about Nigel on this site, even though I’m careful to minimize the screen when he (Aidan) comes in the room. He’s been pretty verbal about his feelings, too, accusing me of going easy on Nigel and not being fair, playing favorites. I try to spend as much alone-time with Aidan as possible, let him know how loved and important he is, but I can imagine it must be so hard for him. What’s not fair is that he’s the younger brother and he always feels like the older brother. What’s not fair is that as much as I try to ease the difficulty of him having a brother with special needs, it’s still there. And it always will be.

Siblings are the unsung heroes of the special needs realm. Parents, therapists, caregivers, and teachers are openly praised – and deservedly so – for all their efforts with those they work with and care for. But the siblings are not often highlighted, and they should be. Some siblings have had to share a room for years and learned to tolerate and sleep through the noises and habits of someone who doesn’t talk, or whose speech is echolalic. Some siblings have gone to the same school and had kids come up to them, many times, to say, “Did you hear what your brother did today?” And in spite of all that and so much more, they take it in stride and learn to love this person who seems so different and strange and often annoying. The siblings know that even if they’d like to poke their autistic brothers in the eye with the very sticks they leave in their rooms, it’s just another thing they’ll have to live with, and they do. Maybe not without exasperation, but with acceptance nonetheless.

Aidan, I’m so proud of you.

Scout’s Honor

Nigel Receiving First Class Rank

Last night was an important night for Nigel! After being involved in his Boy Scout troop for two years, he has advanced to First Class rank, the mid-point on the way to Eagle.

As I have written before, our family has been involved with Boy Scouts for almost four years, and we’ve been fortunate to have gotten to know some really great Scout families during that time. All the kids just let Nigel be Nigel; they tolerate his “fake laugh” (sort of an exaggerated, cackly rendition of the laugh track on old sit-coms), they hold up his end of the flag when he can’t figure out how to hold it during the Court of Honor, and they don’t pick him to recite the Scout Law because he’s uncomfortable getting up in front of everyone. They accept him and for that I am so appreciative. (I guess they wouldn’t be very good Boy Scouts if they didn’t!)

So, he feels like he belongs, and he is slowly but surely working his way towards Eagle Scout. I don’t know if he’ll get all the way there, but he’s definitely learning and enjoying himself. And that’s the whole point.

Having Autism Vs. Being Autistic

For many years I could not say that Nigel was autistic. I could not say, “My son is autistic.” I would readily tell people “My son has autism,” because to me that was different than calling him autistic. The autism, I accepted. To me, saying someone “has autism” puts the focus on the person rather than the disability. Saying my son “is autistic” makes it sound like the autism is his identity.

But it is. It’s part of his identity.

It took me so long to realize that and accept it. I used to tell friends and family, “We say that Nigel HAS autism rather than he IS autistic, just like you say that someone HAS Down syndrome rather than someone is ‘Down syndromic.'” I’m sure I sounded like I was stuck in some level of denial. I was willing to admit that my son had a disability, but not acknowledge that it was actually part of his personality. 

I’m not sure what changed. Maybe it was a subconscious need to fully process the way autism affected our family. About two years ago, I started saying, “My son is autistic” when mentioning him to strangers or acquaintances. And I was surprised to find that I actually felt comfortable saying it. Sometimes I would say it by myself, quietly, in my room. I would hear the words coming out of my mouth, and with them came a sense of something that resembled peace. Autism didn’t feel as much like this formidable disability when I used that different terminology, the one I had resisted for many years. The word I had told other people not to use: autistic. It was almost a relief that now I could actually say it: My son is autistic! I realized that I had finally truly accepted the autism present in our lives because I embraced it as part of my son’s identity, not just something that he “has.”

My realization was further supported by an interview I recently came across at Natural Learning Concepts, featuring Daniel Hawthorne, a high-functioning autistic adult who was non-verbal until the age of seven. Here is his response to the issue of having autism vs. being autistic:

Do you get upset if you’re called “autistic” rather than “a person with autism?”
“Actually, I prefer to think of myself as being autistic rather than having autism. Autism is pervasive; it affects every facet of my life.  It is not just something I have in the sense that one may have diabetes or epilepsy.  Autism affects the way I think, my personality, my abilities and much more, and I accept it.”

I have come to feel the same way about Nigel. I never thought of autism as a disease (like diabetes or epilepsy mentioned above), but I seemed to think I could refer to it as such, in saying it was something Nigel “had.” I have finally come to terms with the fact that it’s part of who he is. And whether he is able to achieve the high level of functioning that Daniel Hawthorne has, or if he stays the same, or even if he regresses, Nigel will always be the amazing person that he is – my autistic son.