“Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism,” These words were written by the founder of Autism speaks a couple of Decembers ago. We are not supposed to be living, merely existing in an autistic void of despair and suffering.
She’s so right.
My heavens you would not believe what my autistic sons have been up to. It’s been truly harrowing.
One kid often doesn’t want to eat lunch, another takes forever to complete his school work, and yet another spends too much time on his I-pad. One time he left waffles ON his I-pad.
Truly, this is darkness.
The worse of the worst, I stepped on a lego left out by one the other day.
(if you haven’t ever stepped on a lego barefoot, you do not know pain)
The most heinous behavior occurs during the Holidays.
I thought I’d share some surveillance photos of their nefarious activities of late.
They’ve been watching Christmas tv shows and reading Christmas books.
They thought they could cover it up but no, they never put anything away.
Parents of typical children will just need to imagine what THATS like, I know, its hard.
They’ve also helped…
(gasp!) MAKE TREATS
and managed to have a hand in our annual tradition of MAKING HOMEMADE ORNAMENTS. (cue jump scare sound effects)
This time we made non-edible cinnamon ornaments to give as gifts to the grandparents.
This autistic child just recently had to have more eye surgery and yet even he participated.
I anticipate that their “next move” holiday wise, will be in the opening of presents.
Maybe we’ll see some lights displays first.
I suppose it isn’t suffering.
(hey, i still have cinnamon up my nose!)
My outlook on my children is not defined by the maybe or could haves or might have beens and certainly not by some standard of non-existent “normalcy” or narrow view of family life.
In all seriousness, I KNOW it can be hard
Celebrating the holidays with a child on the spectrum and everything going right is very possible, nay probable, with these tips in mind:
- Make sure your preparation activities include the child BUT Do not force involvement in activities like those mentioned above but keep them open for participation at the child’s level/desire to do so. One son used to only want to put two or three ornaments on the tree, now he stays till its finished. Example of doing it wrong: A parent inclined to force a child to sit on a strangers lap in a mall for a picture all in the name of tradition needs to re-evaluate their priorities.
- Have plenty of shows and books about the holiday on hand, include them in story time (an excellent small tradition to start if you haven’t already) and put them on the television. Maybe they’ll want them, maybe they won’t, but they’ll be there when and if they do. Doing it wrong: Forcing a child to sit through “Twas the night before Christmas” when they don’t want to. We’ve been having a “Christmas Carol” marathon. Kid participation has been spotty. I’m not insulted.
- When going places keep hunger, tiredness, sensory issues and your child’s time limits in mind. Doing it wrong: A child dragged to a crowded noisy mall for “fun” shopping for hours on end is set up for a meltdown. Another problem is in trying to visit everyone or visiting at homes where there is nothing to do. If you plan to stay long, bring distractions for the child. Some may say this is letting the child run the show, or spoiling. Forget that. This is respect and accommodation for your child’s differences, doing so will make it easier for both them and YOU. I have to keep on eye on this for myself as well.
- Make family traditions for your holiday. It could be something religious like lighting the yule log, menora or advent wreath, a special meal, or a tradition like ours, making homemade ornaments. Traditions tend to define us, and are remembered for lifetimes.
Whatever you celebrate, I hope you have a happy holiday.
Note: If you really truly are just “existing” or waiting for your child’s “next move” know that it doesn’t need to be that way. Life can be better.