I have three children, my oldest ("Ryan") is incredibly bright and graduating college in a month. My youngest ("Amy") has physical and mental disabilities with the mental age of about 4. When Ryan was home for Easter he talked to my husband and me and requested we get somebody to watch Amy at his college graduation. We said we would think about it and have been unable to make a decision. On one hand, Amy can be very difficult to handle in crowds and has a hard time empathizing with others and giving them the attention they might want or need. There are also only two tickets for handicap accessible seating, which means my family would not be able to sit together during the ceremony. Ryan was 6 when Amy was born and he has always been loving and compassionate toward her, so I think this stems from a desire to have this event be about him, not about all the logistics that surround a handicapped person. On the other hand, I am afraid that this will set a terrible precedent. What other events will Amy be excluded from, weddings, funerals, our 50th wedding anniversary party? How would we explain this to Amy, who is very sensitive? My husband and I would appreciate any guidance you have.**
There are two key elements contained within this letter: First, the complex feelings of a "healthy" sibling to a more complex-needs child; Second, the myth that attending a graduation ceremony is a good way to spend your time on a beautiful May afternoon.
The first is something that parents of disabled children need to take into consideration. A friend of mine just wrote her dissertation in Psychology on the siblings of disabled people. Her interviewees all shared the same sentiment of shock that anyone would choose to talk to them. "Wouldn't you rather talk to my sister? Or about her?" It is important to remember that those who can care for themselves sometimes need emotional care as well. That is not something that a single day of graduation can solve. That is something that all parents should do for each of their children.
Twins are the same way. Twins are often bundled together, and many of them like that bundled life. But they also need alone time where they can just be individuals. It is a shame that Ryan has had to wait 22 or more years to request alone time with his parents.
But Ryan, my dear poor Ryan. What a thing to request alone time for!! Graduation ceremonies are undoubtedly THE WORST. Most readers of this blog have sat through dozens of them and spent them all daydreaming about torturing the speaker to death. They are formulaic, pompous, and empty. The music is terrible. There is often the singing of a school song that no one ever hears until the day they graduate. The speeches usually feature empty sentiments about the prospects of this bright young group of people in BLAH BLAH BLAH I can't even write a parody of these without falling asleep at my computer. The highlight is 90 minutes of people marching awkwardly across the stage. The whole point is to watch people stand in line. Just scratch my eyeballs out RIGHT NOW.
Listen, Concerned Mom. You are doing Amy a favor by taking her anywhere but there. Explain to her that graduation ceremonies are terrible events designed to suck the life out of you. Then tell her that she gets to go out with grandma (or whoever) for the day. Let's go to the Zoo! Or a museum! Or on a boat. It will be a treat. Ryan gets his (boring) day. Amy gets a better consolation prize. Everybody wins.
But then, later, take the graduate out for a real day out. Do something more fun than sitting in a huge gym listening to the Vice President of Comcast talk about how inspiring her career is to people holding nothing but a BA in religious studies and philosophy. Just because Amy needs more attention and supervision that Ryan does not mean that Ryan doesn't need attention at all. And just because you give Ryan some attention during his graduation is no reason to assume that you can never allow Amy to go to any other family event. Excluding her from weddings and funerals is just your way of justifying your desire to place Amy above Ryan in every single way. Stop.
(**If you were wondering: source )
All good advice. Also consider the possible scenario that Amy misbehaves in the crowd, causing a disturbance that distracts other families. The parents would feel compelled to step outside with Amy until she can compose herself. Though no fault of her own, Amy has diminished the enjoyment of her family and other families in attendance.ReplyDelete
Hmm. . .I've twice been among the adults accompanying an actual 4-year-old to a parent's graduation, and in both situations it seemed to work for the child to be there, but the adult-to-child ratio was quite high in both cases (other parent plus at least one grandparent plus at least one other friend/relative), and the 4-year-olds in question were quite mature and well-behaved (e.g. capable, in one case, of entertaining hirself by reading during the ceremony). Also, in both cases, the ceremonies were outside, and there was room for the child to move around without disturbing others. I think there's less argument for bringing a 4-year-old (or person of equivalent mental age) to a sibling's than a parent's graduation, and little argument at all for bringing a child (or childlike person of any age) who bores/tires/gets restless easily, and/or won't understand/remember what's going on (we didn't bring my grandmother, who was well into dementia, to my brother's graduation in the same town; we did go by later and take pictures with her and him and his diploma -- an option that is available here, at a party or other after-celebration, however small/family-oriented; inclusion isn't an all-or-nothing affair).ReplyDelete
It also strikes me that these parents are at the beginning of a long and crucial conversation with their two non-disabled children, who will probably eventually need to take over the guardianship, if not the day-to-day care, of their disabled sibling, but probably have some choice about whether and to what extent they do so (I'm not sure of the law in this area). It also strikes me that they're aware of this on some level (hence the list of potential future events). Ryan seems aware of the larger issues, too; he has given them an opening to start the conversation, but/and he's done it by asking them to accept some boundaries. If I were the parents, I'd take his underlying message seriously, and pick my battles carefully. The question is not whether Amy is going to feel left out from time to time; sadly, whatever happens, she's going to end up watching her siblings do things that she will never be able to do, and that will probably be painful for her (and probably even more so for her parents, who are probably doing a bit of projecting here). The question is whether, in pushing the two able siblings to care about Amy's feelings (and/or their own feelings as projected onto Amy) as deeply as they do, the parents will push them away (from Amy, and from themselves), or whether they will bow to the reality that, especially in their twenties, the two older siblings will increasingly want lives of their own. I suspect that the parents will get much more cooperation in the long run if they ask for rather than expect their other children's help with Amy, and respect whatever boundaries the older siblings (and, eventually, if relevant, their spouses/partners) may set.
My little sister was mentally disabled, probably not too different from the sibling above. She did attend my graduation, both from college and from military training a year later. My school was small, and while the speakers were as eye-gouging as any other, the procession lasted nowhere near 90 minutes. I may have thought differently have I been expecting several thousand people to walk across the stage over the span of a few hours.ReplyDelete
But my sister would have been incredibly affronted if she had not been included. She was quite proud of her brother, though I don't think she always knew exactly what she was proud of me for doing. If the ceremony were onerous enough that her sitting through would have been iffy, we would have found a way to include her in the celebration in some other way. That would have been important to her, and it would have been important to me.
The writer sounds as though this is the first time Ryan has ever had a special day all to him. If that is the case, I really feel sorry for Ryan. While it's understandable that parents have to give some children more supervision and attention than others, we also have to recognize that every child deserves (or ideally should have) some undivided attention from their parents, regardless of their situation.Delete
The fact that he wanted to ask for this to be special, and that the writer's reaction was "OMG we will have to bar her from every single future event ever if we skip this one!!!" makes me think that this is part of a longer pattern of prioritizing Amy over Ryan in every single situation.
Which makes me sad.