Today my kiddo taught me: Sometimes the things that we want most, are just out of our reach.
Cyclone Kid and I are usually full of cute stories and funny accounts of life along the Autism Spectrum, but today we could use your help with something.
We’re working with Autism Minnesota in support a bill currently being considered by the Minnesota Legislature. The bill called “HF3172” includes provisions that will insure that Minnesota children with Autism can continue to access medically necessary therapy without their parents being required to face overwhelming costs or unreasonable bureaucratic barriers to proven treatments for their children. These provisions can all be made into law without any further cost to the state by utilizing funds that have been allocated to the Governor’s Autism benefit which has already been approved.
There are ten law makers that sit on the Omnibus Supplemental Budget Bill Conference Committee and it important it is important that these 10 individuals hear from as many people as possible via phone and/or email voicing your support for the HF 3172 Autism Provisions prior to their meeting at 4:30pm on Monday, April 28th. All you need to do is email or call with the message:
“Please support all of the HF 3172 Autism Provisions. Minnesota children with autism are counting on you to adopt these crucial changes to state law to ensure that they can have a chance at a brighter future.”
You can find additional information at http://www.autismminnesota.org.
I’ve listed the contact information for the 10 committee members below. So if you could spare a moment to contact one of them on behalf of Cyclone Kid and the other Minnesota kid’s with. Autism we would greatly appreciate it.
2014 Omnibus Supplemental Budget Bill Conference Committee contact information:
District 45A (Crystal, New Hope): Representative Lyndon Carlson: 651-296-4255 email@example.com
District 7A (Duluth): Representative Tom Huntley: 651-296-2228 firstname.lastname@example.org
District 67A (East St Paul): Representative Tim Mahoney: 651-296-4277 email@example.com
District 04B (Detroit Lakes, Dillworth): Representative Paul Marquart: 651-296-6829 firstname.lastname@example.org
District 63B (Minneapolis): Representative Jean Wagenius: 651-296-4200 email@example.com
District 44 (Minnetonka, Plymouth): Senator Terri Bonoff: 651-296-4314 firstname.lastname@example.org
District 64 (St. Paul): Senator Dick Cohen: 651-296-5931 Use his online e-mail form found here: http://www.senate.leg.state.mn.us/members/member_bio.php?leg_id=10106
District 11 (Cloquet, Hinkley, Pine City): Senator Tony Lourey: 651-296-0293 email@example.com
District 06 (Chisholm, Hibbing, Virginia): Senator David Tomassoni: 651-296-8017 firstname.lastname@example.org
District 43 (Maplewood, Oakdale): Senator Chuck Wiger: 651-296-6820 email@example.com
Miss Shannan Paul
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My latest example… I’ll start by welcoming you to Target®. I don’t work there, but, like so many other outstanding little consumers, Cyclone Kid and I are big fans. He is a child of very few words, and one of those words is “Target®.”
The plan was to stop in to our favorites store to grab a present for a birthday party we’d been invited too. As is the case with most “normal” kid activities, I was more excited about the birthday party than he was. As is also often the case, the plan was not meant to be.
We never made it to the party. Instead, Cyclone Kid had a “meltdown.” It happens with kids on the Autism Spectrum. It sucks, but it happens. It’s why I’ve become very adept at ignoring the occasional stares from other shoppers, while I wait for my kiddo to get it together.
This particular meltdown included a dash toward the toy aisle and a mother/son chase scene that would have made many a track star proud. But it was after that, when the story gets good. I caught up to Cyclone Kid about 26.2 miles away from our cart (Target® seems a lot bigger when your chasing a freaked out 5 year- old) I got him to sit down and hunkered in to wait for the rest of our “meltdown” to run its course. We had a lot of hot, exasperating, hunkering going on.
Now meet our new “angel.” Her name is Mary. Mary works in the Target® Pharmacy, although she chanced upon our motley twosome in the Girls’ Clothing section. As she was passing by I waved her over and asked to journey to the other side of Mount Doom. Mary kindly obliged: no weird looks or odd questions. Then she came back and kept me company while Cyclone Kid decompressed. She didn’t have too, but she did. She looked and my little man and even through his tears and his “meltdown,” Mary said that she could tell that he had a sweet heart.
We talked for a while longer and ended up on the subject of trains. Again, Cyclone Kid is a big fan. Turn our Mary had a train set that she had spent years collecting with her grandson. The set had grown over time, but like kids tend to do, her grandson had outgrown the trains.
How far back do you trace an improbable collection of occurrences? Did it start with a decision to go to the store? An invitation to a birthday party? An “angel” getting hired at a pharmacy?
Mary had just started looking for a new home for that train set. Now, that train set happily lives with a Cyclone Kid, who has a sweet heart that shines through even in the midst of a “meltdown.”
See the little dude in the photo, over there? That’s my Cyclone Kid. The reason I work so hard. The little man who makes me laugh, without saying a word. He is my handsome, fuzzy-headed companion. That’s my kid, and as I’ve mentioned before, he also has Autism Spectrum Disorder.
I adore him, but he can be a lot of work. One of the things that took a long time for me to come to terms with is that I can’t do everything. That was a harsh realization for me. I’ve always prided myself on not asking for people’s help, and not being a bother to anyone. And frankly, not risking the disappointment of putting yourself out there and not getting back the response that you desired.
It is not something that I admit easily, but it is something that I should have admitted sooner; before I developed the permanent, exhaustion-fueled bags under my eyes. Kids are a lot of work. Kids with Autism, increasingly so, and no, you don’t have the time or energy to be great at everything.
This leads me to my latest Cyclone Kid story. If you can’t tell from the photo, Cyclone Kid is quite the bundle. At 5 years-old he’s already more than half my height and weight, and as strong as a baby bear. But, he doesn’t know that, which is okay. At this point, he’s still an adorable baby bear.
The other day while we were playing, he gave me one of his baby bear style hugs and knocked us both off balance. In typical Mama Bear fashion, I elected not to fall on him and instead reached out to brace myself against the nearest wall. As it turns out, drywall is no match for Cyclone Kid and me. My hand went right through, creating this lovely hand-sized hole in our wall.
That was awesome. I took a deep breath and then laughed for 10 minutes. (I’m a comic. If we don’t laugh at weird stuff like this, we’d burst into tears.) Then reality set in, that chuckles do not repair drywall.
Here’s where the “helping hand” comes in. I considered trying to fix the hole myself, but instead, I mentioned the fiasco to my good buddy, Derick. Of course, he laughed at me too, but after only two compulsory, “Sure I can help you with your hole,” jokes, he patched things right up. Totally worth it!
My “Knight in Plastered-Armor” took about 15 minutes to do what would have taken me all day, or even worse turned into an “I Love Lucy” style disaster.
(Don’t get me wrong. If I ever get a sitcom, that’s totally what’s going to happen in the episode. We’ll call it “Plaster-geddon.)
Many families with children on the Autism Spectrum talk about how they wish that they had asked for help sooner. I am no exception. So thank you to all the good friends that have stepped up to help this occasional “lady in distress.” Cyclone Kid and I appreciate you all very much.
Miss Shannan Paul
What’s your weekend like? Trips to the park? Morning cartoons? We get that sometimes. But, we also have therapy sessions. My little Cyclone Kid works hard and sometimes to get enough therapy hours in. We’ll pick up a Saturday morning ABA session.
Instead of Bugs Bunny, he was working on his Vocal Imitation Trials, Letter Recognition and Time Compliance. Things that he has to practice daily so that he can catch up to his peers. Like I said, Cyclone Kid works hard.
Me, I kept busy downstairs in my office. Including working on this lovely little display of my sword collection. I think I’ll start a Pinterest Board, called “Sharp Around the Edges.”
Hope that your Saturday is beautiful.
Miss Shannan Paul
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Here’s something that I’m putting in print, so that I can get the frustration out of my head and release it to the universe to bounce around with the other random frustrating things in the cosmos. I hope it has fun out there in the chaos.
One of the biggest obstacles that my Cyclone Kid has is his communication skills. He does well with receptive communication, for instance explaining a process to him or telling him to do a task, or telling him a story. But, he’s not great at verbalizing things and we don’t have a lot of words in his vocabulary yet.
He still wants things, though, like any other 5 year old, but he can’t always effectively communicate what he wants. Which is the cause of our current YouTube battle.
He’s figured out how to work the “search” feature and wants my help in typing in the subjects for the videos he’s looking for. Which would
be great, but I’m not always sure what video he wants me to search for. It turns into a complicated game of “Guess Who.”;
He probably thinks that Mom doesn’t know how to spell “Cars” or “Train” – whatever his little agenda is. Silly mama, that I am.
Its something we’re practicing. I’ll get better at asking him the right questions. He’ll get better at saying “train” or “Lightening McQueen” (What a mouth full?)
Or, maybe I’ll delete the YouTube app, and we’ll find something else to do. Wait, that was the frustration creeping back in.