A funny thing happened on the way to the office this evening…..OK, I was on the way to Rafael’s.  Regardless, I ran in to an old friend of Deb and I’s, Heather.  Heather has known Dayna since she was a baby and she teaches here in our county.  Part of her teaching includes her students reading my blog.  I’m actually more stunned and touched by that than I can express here, but she mentioned that her students had questions about our situation.  She was able to give me two of those questions tonight, so I thought why not answer them right here on autismchallenges.com?

#1 – How does Dayna celebrate Halloween?

Truth is….that’s hard to say.  Dayna is somewhat indifferent to Halloween and other holidays.  For one thing, our neighborhood is crazy on Halloween night.  Lots of parents, lots of trick-or-treaters, lots of commotion and lights.  That alone normally turns Dayna off, it’s too much to process for her.  We have tried in the past to walk around, and she seemed to always want to go home.  There is also the uncomfortable part of walking a teenager by hand to someone’s door, but I guess at this point if someone has a problem with that I really don’t care.  And if they let me know they had a problem with it I would probably egg their house.  But regardless of all that here’s the thing, we really don’t know if she wants to go home or stay out.  She doesn’t seem to enjoy it but she can’t tell us in any certain form, so we do our best to determine on our own.  That’s where it can get frustrating, because you always have to question if you are doing what she wants or what she does not want.  For example, we had a holiday party at a very good friend’s house to attend the night before Halloween this year.  We typically do not attend events like that, because no matter what the event or holiday we find that Dayna spends her time asking to go home, sometimes creating a scene, and often making it hard for us to be part of the rest of the event.  Of course that normally means we as a family then don’t get to go anywhere, because we don’t want to leave Dayna out.  That’s a whole topic for another post.  But this particular night, the day before Halloween, we decided it was more important for the rest of the family to attend the party.  We wanted to be part of a group, let Dayna’s brother and sister enjoy time with other kids and have a sitter stay with Dayna.  We were sure that’s what Dayna would want.  And the truth is, we had a great time and it was much needed for Kiley and Sean…and Deb and I.  When we got home however, we were all downstairs still in our costumes, and Dayna came downstairs from her room.  She was crying hysterically….but would not tell us why.  Now that’s not a situation that is unusual, Dayna has times when she cries uncontrollably without reason to us, and other times when she laughs uncontrollably.  But in my mind, I could not stop thinking….was she sad because she didn’t get to be a part of the night?  Did she see us dressed up and wanted to be a part of the fun?  For all I know she may have been sad she could not find a video tape in her collection of hundreds, or maybe a show on cable was no longer available.  We’ll never know, and that’s what can be hard.  You always wonder if you did something that upset her and she can’t say it.  You always have to weigh what’s good for Dayna with what’s good for everyone else.  So I guess the answer to ‘How does Dayna celebrate Halloween?’ is the same answer to how does Dayna feel any other day….only she knows for sure, and she can’t tell us directly.  But we do our best to figure it out!

#2 – How are Kiley and Sean effected by Dayna’s sleepless nights and behaviors?

That’s not a cut and dry answer either.  It’s a ‘moving target’ in some ways.  Both Kiley and Sean are younger than Dayna.  Kiley by about two and a half years, Sean by almost ten.  When they are young, Dayna just seems normal.  It’s like they tune it all out, like a commercial on TV.  For instance, as I write this Dayna is jumping up and down in her room right above my head, and Sean is sitting on the floor in front of me.  The ceiling fan is shaking and the noise is loud.  Now I’ve already gone upstairs and asked Dayna to stop.  Of course she has not stopped which is frankly driving me crazy!  Sean though seems to be completely oblivious to it all.  He tunes it out completely.  I think their bodies also get trained in some way, most importantly to sleep through some of the commotion in the middle of the night.  But as they get older….as Kiley has, it does get more difficult.  I recall a trip home from Virginia in the car late at night.  Dayna wanted to be home, and we still had an hour to go.  For an hour she screamed and cried at the top of her lungs, non-stop.  To Deb and me it was tormenting, to Sean it was annoying, but to Kiley it was too much.  She started to cry, just out of frustration.  It had become too much for her to handle, and rightfully so.  As she has grown older, those situations of frustration are more frequent.  To both Kiley and Sean the reality is that they do not get the same things that other kids their age may get.  We are limited in what we can do with them, we don’t go on vacations far from home, we don’t go to amusement parks.  We don’t get to spend time with other families very often.  Sound familiar?  Yea….I touched on it above in the first question.

It’s not all like that though, its not all bad for them.  I believe the whole situation makes them stronger.  Kiley and Sean see things differently than other kids.  They may not realize it, but they do.  Things aren’t always perfect, things aren’t always easy.  They’re more understanding of other kids that may have some disadvantages or needs.  Most importantly, not everything can be fixed and they know that.  What we can do and we have to do is adapt, and adjust.  Yea….it’s not that simple, but at the same time it is…you know what I’m saying?  And they have that built into them by what Dayna has taught them.

So the question was, ‘how has all of it effected them? ‘  Answer: It’s turning them into better people than they realize they are.

So that’s it….for now.  Have more questions?  Send them to me!  (Or tell you’re awesome teacher Heather…pictured below when Dayna was a baby…and at Special Olympics more than a dozen years later!).

img0042014-05-07 11.34.14

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