But Sophie is another thing entirely. She LOVES people, like I do, but she freaks out when she sees them, almost to the point of giving herself a seizure. Kind of a party pooping sort of thing, a seizure.
So...I have been taking her out and about a bit at a time. We are always with a caregiver. At first, we just drove somewhere and back. Then, I would go in a store and she would stay in the car. Then, we went into the store...very particular stores...small, not too full of echoes, lots to see. Our local green grocer is ideal. She was really doing well with all of that. The last few hospitalizations have created some interruptions, as has my few days of work here and there (the nurses are not allowed to take the client off premises, but my homeschool person is), but we are getting on with the "desensitization" program.
In the end, I'm not entirely certain any of it will work. To a certain degree, Sophie will always have over sensitivities to stimulus. It's part of her brain damage, but, I have to keep trying, for her sake.
Anyway...
There was a little gathering of the residents of the building last night in the foyer. I was hell-bent on going, if only to see if there was anyone under 80 actually living here...and even then, I thought I could pick up some grand-parent figures for Sophie and great old folks stories for me. I told Sophie what we were going to do and set her up in her chair and off we went, snack in hand. I was hoping the snack would help her be calm.
So, in the elevator we go, down...door opens and VOILA (or WALLAH for Elizabeth)...
It's like a geriatric festival...walkers, grey/blue hairs and all!! We are immediately the centre of attention...and I hear whispering...Sophie...some know her name already....and then the reaction.
When it comes to old folks, there are generally two distinct reactions to Sophie: one group approaches her and the others avoid her like the plague. This is what happens without fail. There is never an in between. So, I met one lovely woman...Leslie...and of course Mike (this is private joke that some of you know) who attempts to ply me with booze spiked egg nog.
And then there is poor Sophie. She is immediately squealing, half in delight and half in horror at what is likely some serious discomfort in her spastic body, taught with tension. She looks like she's smiling, but I can see in her eyes the real pain and the frustration. Those who have gathered around think she is happy; I know better. This is going to be an epic fail and I know it and we leave in about 6 minutes...but...I tried. Sophie tried. And that's all we can do for now.
It is genuinely sad that the poor kid cannot calm herself enough to enjoy the social experiences she so desires. I will not give up, however...we will keep going and try for smaller venues. I want her to have a good life and being surrounded by other human beings is part of that...for both of us.
I have a lovely friend on Twitter whose name is Laura ... whenever her face comes up in my timeline, I think of the song Never Be the Sun, best known as performed by Emmylou Harris (aptly enough, given her condition). She has ME. She has been mostly bedridden since 1994, when she was 14. She lives with her parents, but cannot have any visitors, not even her extended family. It makes me so sad to think how lonely she must be. I find social gatherings difficult myself, but at least I can dip in and out. I hope Sophie can get a little bit of enjoyment out of it.
ReplyDeleteI am truly sorry that Sophie reacts so very strongly to a stimulating environment like a gathering. I have no answers. Adam's body also goes into spasms in a wheelchair after a bit of time. Discomfort results in spasticity which results in moans and a quick exit from wherever. I appreciate the need to get out. My talk, large or small, is limited to postal and other delivery men/women. I do understand...
ReplyDeleteI am so sorry for you and Sophie.
ReplyDeleteWe live a very similiar life and every week I battle to find "something" that can provide some social stimulus without throwing him into a siezure. School is now limited to a hour a day, two days a week, because it is simply too stimulating. He wants to be with the other kids so badly, and then as soon as he starts interacting (being by), it is just too much, and we must retreat. During this time of the year, I find it is especially difficult to watch him miss so much. And personally difficult to constantly balance the need to provide quality experiences against seizure. Adding to it all, relatives, whom still after 13 years, do not really understand, nor accept his limitations and always place unrealistic expectations on him (and us).
I hope you find your way...
It is oddly comforting to hear that others face the same situation with their children.
ReplyDeleteIndigoJo...sad indeed for your friend. Wonder what helps you cope when you are in a social situation?
Phil: yep.
Engstrom: it is indeed heartbreaking. There was a time when she went to school every day in the PM. I wonder if it will ever be something she can do again.
I've pretty much failed at the socializing and the play dates, but we do go out. Dimitri used to get overwhelmed and kind of glaze over and go into autopilot when younger, he does well now most of the time but it was a long slow process.
ReplyDeleteWe went to the same small, quiet coffee shop for years, not exactly a kids first choice, but he does like people watching too (I may be trying to ease my conscience here), that really helped him get used to going out (and wasn't to socially demanding for me). Now we can only go to places that have free wifi because of the iPad, but that's a whole other story.
Your apartment building sounds funny! The blue rinse brigade?
I've thought for a long time that I must have social anxiety, because I seem to dread small talk more than most people. I'm glad I'm not alone.
ReplyDeleteI'm so sorry that Sophie was in pain during the party. That truly sucks.
Daniel tends to either LOVE being out among groups of people (and makes a lot of joyful noise in response), or he shuts down completely. His sister says that it's unfortunate that people don't usually get to know the real him because when he does that they think he's just not "in there".
Just keep trying, mama, and you'll find the right mix for Sophie. Maybe she wanted to protect you from Mike and the hangover that could have come after hanging out too long with him! lol
Emma: I really do think our kids also enjoy just watching. I know Sophie does. Sometimes it's better...and she calls out random names and says "hello" in her pipey little voice. Some people respond positively.
ReplyDeleteCarolyn: I can't do small talk...I have to delve into deep, philosophical or esoteric or political discussions right off the bat, preferably with no more than two people at a time! LOL!!! Scares the crap out of most. For this reason, I love academics and nerdy types. So true too about people getting to see "the real" child. If they only knew how capable, how fun, how wonderful. Oh well...and I doubt I will ever stop trying.
How familiar I am with the social/sensory overload dilemma. Poor sweet Sophie. We persevered for many years and did progress but then peaked and backslid. I don't know how much either Miel or I want to put energy into attempting that long slow climb again---or whether it would work. She does love seeing all kinds of street life from her perch in the van, safely through the window. The only small talk she likes is in Woody Allen movies! And me, I'm rather practiced at the just staring thing, though it's harder to get away with that than it used to be. Oh for the good old days....
ReplyDeleteA: Though I know that sensory issues are usually a big deal in the "autism community", I did not know it was so prevalent among other sorts of disability...I thought it was because of Sophie's stroke. Backsliding...yes..I wonder. Sophie used to be better in some ways...it seems the more cognizant she became the harder it was for her to cope. Anyone else out there with these issues? I am very interested in hearing about this.
ReplyDeleteI'm sorry. Daisy has similar yet different issues (if that makes any sense) so I can kind of understand the anxiety that goes along with taking Sophie out and about.
ReplyDeleteIn my case, I start to wonder at what point someone - God forbid - might try to touch her and she'll start screaming NO NO NO NO NO just before throwing herself on the floor and possibly biting someone or - more embarassingly - herself. Fortunately I've found the times where the children's museum are empty and go to a library program that is very understanding of Daisy's needs (they even skip the clapping songs on the days she's struggling with the noises).
I don't know if this piece of unsolicited advice helps or not but I've found that doing skin brushing, making Daisy jump on a trampoline before leaving the house (okay - maybe this suggestion doesn't apply), and then having her wear a sensory vest under her clothes has made a huge difference in how she interacts with others. It's also not a pain in the ass at all.
So, good for you for sticking with the desensitization process when it can be such an exhausting uphill battle.
You're pretty much a rockstar mom.
The small talk quote you have posted above has become my favourite quote at present- just love it!!
ReplyDeleteRachael's story about Daisy saying "No, no, no, no!" rings a bell. We heard that often from Annie when she had sensory overload. And unlike Sophie, she didn't have a stroke, it was a hypoxic brain injury. But like Sophie, lots of sensory aversion.
ReplyDeleteYour plan to desensitize her will work--don't be discouraged by the sometimes slow progress. Maybe Sophie could handle just walking in the halls of your apartment complex first, and seeing people just casually, where you could wheel past them if she gets overloaded. With Annie, as long as she was moving in her wheelchair, she was happy, but as soon as we stopped, she would tolerate it for about 2 minutes and then start making noises to get moving again.
Re: seizures--Annie sometimes would seize in the middle of the mall when we took her there to stroll around. Once a lady ran up to Annie yelling, "Oh my GOD, oh my GOD!!" when she saw her have a seizure. Of course, my husband was by himself with Annie, and was alternately trying to help Annie and calm this lady down...as the crowd gathered around to watch.
Yeah, sometimes it does seem easier just to stay home. But keep at it. Getting out is good for you and for her.
Rachael: going to look up what a sensory vest is. Is that a weighted thing? We're all rock stars around here!
ReplyDeletemhk: LOL!! Works for me!
Jean: Been too long not doing enough with that kid. She has good days and bad days, though. I think we can win at this. Your picture of a bunch of people freaking out around your child seizing...oy! Kinda funny and kinda awful.