While quizzical is not exactly the right word, what I am going to try to write about is a piece of our autism "Puzzle”. But, since we are past “P” and onto “Q”…two words, artistic license.
Let me warn you, this is going to be a long post so go to the bathroom, grab a coffee...please bear with me while I try, in my convoluted way, to explain a part of Riley World.
There is a poem “Welcome to Holland” by Emily Perl Kingsley (click here if you’d like to read it) which compares the experience of someone finding out their child has a disability to having a trip to Italy rerouted to Holland. Some parents love this poem and some do not. When I first read this poem shortly after Riley was diagnosed, I bawled like a baby. I could relate to this poem.
In life, it is hard to understand the “how and whys” unless we can relate to a certain/specific situation. It can be even harder to live every day in an environment and still not understand all the “how and whys”. This is what living with autism can be like.
What I consider to be Riley World’s greatest challenge is communication. If you do not know how to say/explain something or can not understand what is being asked of you…think how hard life would be.
Just in case you decided not to read the poem, not to worry, you’re in luck because I am going to provide you with a scenario of my own. Here goes…
You are being taught a foreign language (for example French) but, only for 1 year. You will get to know some key words/phrases. Just the basics though, like how to say water (or wine) and ask where the bathroom is. But you will probably not pick up on the nuances of body language or facial expressions...that’s covered in year two.
Now, imagine you are a guest at someone’s home in Saint-Tropez. They only speak/understand French. No English. You try and answer as best you can with a simple “oui or non” (that’s yes or no for those who don’t know any French). They ask a question. You answer. There is a pause and you are afraid you may have misunderstood the question so quickly change your answer to the opposite. They ask the same question again, you want to be polite so you go back to your first answer…or repeat your last response. Have you ever been in a situation like this???
Even though Riley is almost 26 years old, his language comprehension level is, at most, at about a 9-year-old level. Often times he appears to understand what you are saying. R has an excellent memory and learns most things by rote. He can say and even do all the right things so you assume he knows what he is doing. Unfortunately, that can be the downside because he may not understand why or what he is learning.
Now that you have no idea what I am talking about, here’s what brought all this on.
Yesterday I had to do some minor repairs to Riley’s "New" Puppy. Puppy is starting to show some major signs of hard loving.
So, in my infinite wisdom, I decided perhaps a patch might help the faux fur loss. Riley was most excited when I explained and even showed him what I was going to do. After I finished my handiwork, his enthusiasm was…well, not exactly…enthusiastic.
Not being new to Riley World, I realized something was amiss. Although many FB friends commented how lovely the heart was, I had a slight inkling (after the fact of course) that the patch might be interfering with where he snuggles his face into puppy. But, I decided to hold steady and avoided his eye contact for the rest of the evening.
Apparently…my feeling was correct because this is what we woke up to this morning.
Riley had my "sewing kit" (I did not exaggerate when I said I do NOT sew) out on the Island along with the dismantled heart.
See that hole?? That hole was NOT there before. A direct result of scissor damage trying to remove the heart.
Attempt number 2. Perhaps a patch under the faux fur with a more even/flat stitch might work????
Nope. I learned my lesson and asked Riley if he wanted me to "take it out". He did. Want it out.
Attempt number 3. I looked up how to do an “invisible seam” on YouTube because that blanket stitch was a major fail!
It may be a little "bunched up" but...Riley was happy.
Oh, and an additional clue that Riley was stressed out about the patch…he also unwrapped the entire bowl of leftover Easter candy in the night. In previous days we might find one, maybe two unwrapped ones in the morning.
Long, looooong story short...communication is really hard in Riley World. And even though Riley may have challenges with his verbal communication…he makes his displeasure crystal clear. If you made it this far, thanks for hanging in! Back to my regular shorter posts tomorrow.
PS...I'll let you know if New Puppy makes it through the night unscathed.
You did good, especially for a non-sewer. Is that spelled right? Sewer as in someone who sews not sewer where your wastewater goes.
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