I was asked once, "How does one person change the world?" My reply was, "One story at a time".
The diagnosis of autism was a rare one back in 1988 when Matt was diagnosed - only 1:10,000 affected. Then the numbers grew.....and people began to notice. I went from trying to explain autism to those Matt met each year, to really promoting autism awareness through my stories and speaking engagements using this little website. Although most people know the word autism now, we still have a long way to go to make this world a better place for those on the spectrum. Thank you for helping me promote autism awareness.
Thank you world, for your willingness to listen and to open your heart and mind to the mysterious puzzle that is autism.
Progress Report: Here's what's been happening . . .
November 11, 2014
The Doctor Visit to Oz
Who could predict that Matt could sleep at night without there being something seriously wrong? After all, this is a guy who gets up at 6pm and is wide open until 7am. He calls at 7am as he is getting ready for bed. It usually takes him another hour before he crashes. So when he was discovered sleeping from 10:30pm – 2am red flags went up. Something must be up… right? A fluke here and there is no big thing because he does on occasion try to get up early (early being 1:00pm in the afternoon) but when it happens in a streak like this past week then something’s up – has to be, right?
I talked to Matt this morning and he was sounding good, told me what he watched on TV last night and the games he played. Just after I talk with him, hippie hubby calls and tells me that he called Matt last night – several times. When Matt finally answered the phone he told Tom he was “just taking a nap”.
A four hour nap – at night, when it’s dark . . . Something is surely not right. Keep in mind that Matt does not respond to pain. He could have a third degree burn and you would never know, a toothache, a headache, a broken arm – he does not respond to pain (it does not mean he doesn’t feel it… he just doesn’t respond to it. It’s complicated).
So, after much personal debate about whether to go over and check him, take him to a doctor, or just wait and go over tonight, I decided that a trip to the doctor was in order. I am not a hysterical, worrier mom, nor a determined get-in-your-face warrior mom either. At least, not anymore– those monikers were of a different time when Matt was little and I had to push the medical professionals in a new direction. But let’s consider now that the last time Matt saw a doctor was in 2011… 3 years ago, to have a suspicious mole removed. He is the healthiest guy I know, with his last antibiotic taken 19 years ago – wow. Nineteen years. I’ve changed over those years too. I let the ignorance slide because quite frankly, you can’t fix stupid when there’s arrogance involved – and doctors tend to be arrogant.
Imagine now how I felt when after finally succumbing to the need to have my son seen by a doctor that I find that today of all days, Matt’s doctor was not in the office. He would have to see another doctor. I let them know Matt was autistic. Driving to town I had 2 repeating thoughts; what’s going on with Matt? And *sigh* I will have train another doctor (– dear Lord help us).
I called Matt and told him I was on my way, and that I would be taking him to see a doctor this morning. Matt’s reply was a resigned, “okay”. No argument, no telling me he was fine. Another red-flag went up. When I arrived he was laying on his couch with a pillow over his head (normal sleep position). He slowly rose to greet me. The poor guy was tired. I told him why I wanted a doctor to check him out and explained that it would most likely require some blood-work. We practiced each step of a blood draw, ending in how to hold his arm still. He almost panicked – but I reminded him of his courage, his age, and his adulthood status – and the panic passed. I told him the doctor would most likely push on his belly – so we practiced that too. When I pushed on Matt’s lower right side, he jumped – his knees bending to a half-fetal position. “Does that hurt?” I asked him. “No, I’m fine.” (well of course). “Can I try that again?” I asked. I pushed down again in the same spot. He was ready for it that second time and although he still flinched, it was far less of a reaction than the first. Hmmmm? . . . Appendix?? Yep, we’re definitely going to see a doctor.
After filling out forms a nurse came out and called his name. Her distance from him, her expressions on her face, even the hesitation in her voice – all said she was scared of my son. Silly nurse – she should have been scared of me, not him. As I watched her in her body language I thought, ‘Seriously? Don’t they teach you about autism in nursing school?’ She had no interaction with him (not even a smile) until she had to take his pulse (using a pulse-ox) and blood pressure. She never explained a thing to him and Matt was fearful of her. I talked him through each, explained what they were for and gave her my best ‘Liz- look’ (it’s an evil – go-to-hell look that I reserve for those most incompetent of people).
Enter the doctor. The doctor took a short history and did a short physical. He barely touched my son. Matt never flinched when his lower right side was touched – and I do mean touched. The doctor didn’t press down at all. Since when does having autism mean that a physical is just cursory glance? How many children are sick and their illness not discovered because doctors and nurses are afraid to touch them?
The doctor turned toward me and basically asked what I wanted him to do… so I gave him my list of blood-work and request for a chest x-ray. I told him of Matt’s previous bout with pneumonia – no symptoms except a low grade fever and a change in his sleeping patterns. I told him he didn’t even cough. Of course, the doctor says, “You can’t have pneumonia without a cough”, for which I kindly replied, “That’s what the first doctor said that missed it. The second doctor an hour later took an x-ray and found 1 lung completely full and other half full and he spent a week in the hospital.”
This new doctor then gave me the look – you know the one – the one where they are ‘all-knowing’ and moms are just peons, ignorant and silly. He decided he would order the bloodwork – but not an x-ray, just to prove his point. He ordered a urine analysis too – though I really didn’t think he needed that (because there are very significant smells that go with that – smells Matt did not have).
Oh goody, here comes Miss Sunshine nurse with a urine cup. Silly nurse handed the cup to me. I nodded toward Matt. She grudgingly handed the cup to Matt – with no explanation as to what it was for. *sigh, again*
I walked Matt down the hall to the bathroom – which was right next to the lab and explained what to do. Matt, in his wisdom, looked at the cup, then at me and wrinkled his nose and uttered, “Ewwww”, then walked into the bathroom. The walls are thin and you could hear him doing an outer monologue, “What kind of place is this? Happy Veteran’s Day (sarcasm) … oh yes, it’s Veteran’s day (happy) ……ahhhh (frustration) …….Okay, almost done, almost outta here (resigned).”
As Matt was getting his sample and speaking, I was smiling… thinking, yep, that’s the guy I know and love.
Two lab techs in the lab looked over and I explained to them that Matt was autistic and that we had practiced this, but I would really appreciate it if when they took his blood they announced each step – and they were happy to help. (Excellent lab staff). Matt held steady, looked away at the crucial insertion of the needle, made a face that said ‘ouch’ and then in a flash it was all over. The tech asked him which band-aide he wanted and seeing the wonderful cartoon assortment, forgot that he had just had a needle in his arm, and replied, “Roadrunner!”
Back to the room we went to await the results…..
When the doctor returned with the “All is normal” result he smirked – seriously. How did I keep from head-slamming him into the exam table? I must be seriously mellowing in my old age. Or maybe, I have seen this type of interchange enough times to know that awareness is not reaching those that really need it, and some are too arrogant to even realize they need it. To top off the visit, this soft-spoken, condescending physician remarked on how he knew someone with an autistic child and they made sure he was not left alone, that he had a caregiver at all times and he just cut short of saying – “and why don’t you?” So this is what independence is to those with no or very little autism awareness – an incompetent mother? He basically called me a bad mother for allowing my son to be independent! Between you and me, that is why I wrote the book – so idiots like this may learn something about freedom, and longing and other very human emotions that are part of autism. I bet this guy still thinks of autism as robot-like.
I’m glad I took him so that he could at least have the blood-work done, but all else was basically a waste of time and energy. As I contemplate the signs and symptoms I have come up with 3 things it could be.
1. A slowly festering appendix
2. Another round of silent pneumonia
3. A virus… a simple virus that has him worn out and tired and screwing up his sleep cycle.
I want to think its number 3 – but I am watching for possibilities 1 and 2, and to be safe, Matt is spending today with me and tomorrow with Tom.
This is what an illness is like in the land of autism. And those professionals interacting (and I use that term loosely) with my son are like Dorothy in the land of OZ. When dealing with a person with ASD - especially as severe as Matt’s - I just want to scream, “People, you are not in Kansas anymore!” Toto has more sense about how to treat people than these people did.
Where’s those flying monkeys when you need them?
Available in bookstores December 16, 2014
Reviews: 5.0 out of 5 stars
The World According to Matt Shines Light on Autism
“They say you must walk a mile in another person’s shoes to really know them. Liz Becker is an Autism Mom who walks a marathon in her autistic son’s shoes and details it beautifully in her book Autism and The World According to Matt: A collection of 50 inspirational short stories on raising a moderate/severe mostly non-verbal autistic child from diagnosis to independence.
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Autism Light, created by Alan Stokes, recognizes heroes in and for the autism community.
Honored as an Autism Light #13, on August 11, 2011". There are over 250 Autism Lights now and the number continues to grow. It's an honor to be a part of this autism awareness campaign. Thank you, Alan!
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Matt and I took the challenge. I went first so he knew what to do. He didn't like the idea of eyes-closed to draw, so I leaned in as he was drawing and told him it was okay to open his eyes if he wanted to.... but he didn't. Watch and see what happens when pen hits paper!!