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A Day With Autism in the House
Our 12 year old son, Ryan is obsessed with videos and on this day, he is obsessed with Penguins of Madagascar and not just any Penguins of Madagascar. He is obsessed with one episode titled “The Lost Treasure of the Golden Squirrel”. Seems simple enough, considering just about every video known to the world is available in one form or another on YouTube…just look it up, right? So he did and there it was! Only it wasn’t…it said it was but it was the WRONG VIDEO! Oh, cruel world! Who would put up Season 2 Episode 4 with the title “The Lost Treasure of the Golden Squirrel” and then show “Call of Doody?” The tears and frustration of trying it over and over but it’s always WRONG! But wait, here’s another one…oh but it’s only the 43 second trailer for “The Lost Treasure of the Golden Squirrel” not the full episode…more tears, more frustration. Helpful parent, “let’s try Amazon Prime” only to find “This episode is currently unavailable” Not available to rent, not available to buy…unless I want to buy the entire 56 episode set from Season 2 for $89.00. No I do not.
Ryan then suggests the library. The library! Oh but the library is closed because it’s a holiday. More tears, more pacing, more stemming and repeating…at least the mantra has changed from “It’s the wrong one” to “the library is closed, I’m sorry, the library is closed, the DVD is not here” We look it up at the library to see if we can reserve it…they don’t have that episode. I’m beginning to wonder if this episode really exists or if it has been deleted by the NSA due to the highly confidential material related to the Golden Squirrel Secret Weapons Program.
We take a break from tears and videos and frustration. Ryan has been whisked off to the airport, his happy place, and I am still searching in vain for the lost episode. I stumble across a random YouTube video that shows the opening credits to EVERY single Penguins of Madagascar episode for every season. Seriously who has the time or inclination to record and post that? I try season 2 and TADA! I hit squirrel gold only 6 trailers in and discover that the episode is really number 7 NOT number 2 (the aforementioned Call of Doody). Search for Season 2, episode 7 and yes! It’s there!
Ryan comes home, I’m the hero and after all of the tears and mumbling and misery, he forwards to that one certain scene where the penguins fall down or fly up or crash into something or whatever was in his head that he HAD TO SEE in order to make the world right for him on this day, at this moment.
And then he’s done…for this day.
The next day he comes home and discovers that furniture has disappeared in anticipation of new floors. He is sobbing uncontrollably as he looks at the empty places in the room. Lying on the floor where the couch used to be, repeating “I want the chair back, I want the holes to go away”. I am hugging my 12 year old man child as he weeps for the couch and the chair and his orderly world that is suddenly out of order.
The next day is a better…”when are we getting a new chair?” I want the new chair now. I want the new chair to be gray. Where did the old couch go? When can we visit it?” There is a small light appearing at the end of this particular tunnel. These are the small victories we take in small steps as we just try to keep moving forward. Not every day is like this, most are blissfully tear free and filled with smiles and laughter and so it goes with Autism in the house.
But what will it be like when this house can no longer be Ryan’s house? What happens when our kids who need routine and structure and want friends but can’t quite figure them out need to be on their own? What type of house will work for Ryan?
Our hope is it will be a place like Sunflower Hill. A place where Ryan can have friends who experience the world the way he does; a place that offers support and structure to help him navigate his days. Our hope is that Ryan will be able to live a fairly independent life, that there will be some sort of employment for him and that he’ll be in a safe community. A dynamic place where Ryan can feel good about himself, have the freedom to be who he is and the opportunity to find out who he can become.
Ryan currently lives in Pleasanton with his moms, Diane Berry and Regina Stoops and his two brothers Jack and Evan. Diane is a Director at Anthem, Inc. and Chief Adventurous Mommy. Regina is the Chief Operating Officer of the Berry Boys household. Regina is also a standup comedian and writer who was born and raised in Normal, Il. She spends much of her time finding the humor in her “normal” life. Regina has found that being upset about what comes your way is not nearly as much fun as turning it into a comedy routine. Regina recently performed for the Sunflower Hill Comedy Night and here is a clip from that event: https://youtu.be/xiUiSPrII2o. Follow Regina at www.facebook.com/reginastoopscomedy