In observance of Autism Awareness (or as I like to call it, Autism Awareness in Action) Month, my husband has been sharing “What Autism Has Taught Me” posts on his Facebook page each night. I’ve enjoyed following along. Reading peoples’ comments reminds me that there is still a big need for awareness. Hopefully, that awareness leads to action. And I gotta admit that I’ve learned a lot about high-functioning autism from some of my pals recently.
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In recognition of autism awareness month, I thought I’d share 30 things throughout the month that autism has taught me. So here we go:
What autism has taught me – Day 15:
It’s what separates the men from the boys. Can I just tell you this in love, men? If you have a child with special needs, there may be no greater time to Man-Up than at this moment. It’s not a time to run and hide and be absent, but a time to be present and involved. Your family needs you now more than ever. This is your opportunity to lead your family through challenging and often uncertain days.
Remember that beautiful gal you marr…ied? Chances are she’s working like a dog advocating for your treasure. Drop-offs, pick-ups, this therapy, that therapy, RESEARCH, dissecting ABLS, observations, RESEARCH, teacher conferences, ARD meetings, planning and prepping for doctor visits with the biomedical team, planning social events, summer activities, grant writing, did I say RESEARCH? Look, the list goes on – and this on top of normal everyday life responsibilities. Is it any wonder you feel like she has no “time” for you? Guys, this is our chance to serve our wives as we committed to doing when we said, “I do”. To lighten the load by doing our part and responsibility. To help out a little bit more around the house. To make our wives take time for themselves (I say “make” because most feel too guilty to do so). We need to quit thinking selfishly and put the needs of our wives ahead of ours.
And then there’s your child(s). They need you like crazy; both your neuro-typical and special needs child if that be the case. They both need you as a constant presence in their life. They both need to know that their dad loves them to the moon and back. They both need to know that when the going gets tough, dad is there leading the charge in his God-ordained role.
I know it’s our nature to want to “fix it.” And it’s challenging, perhaps humbling, that we can’t fix it – at least not overnight. It may not be the adventure you had planned, but it is an adventure…a different adventure…an exciting adventure when you see the difference you’re making in your child(s) life. I’m not saying I have this all figured out. For every finger I’m pointing at you I have three pointing back at me. Perhaps you haven’t been the presence your family has needed. Start now. Perhaps you’ve buried yourself in work to “hide” from the challenges at home. It’s time to be courageous and step up. Perhaps you just simply don’t know what to do and so you do nothing. Talk to your wife. I know she can respectfully and happily guide you where you can help (right, ladies?). Your family needs you now more than ever. It’s time to Man-Up!
“25 Husbands, love your wives, as Christ loved the church and gave himself up for her, 26 that he might sanctify her, having cleansed her by the washing of water with the word, 27 so that he might present the church to himself in splendor, without spot or wrinkle or any such thing, that she might be holy and without blemish.” Ephesians 5:25-27
What autism has taught me – Day 16:
To adjust your perspective. Camden often has a different way of looking at things. For instance, often he’ll tilt his head to look at something that normally wouldn’t cause for a head tilt. Sometimes it seems his head is tilted nearly upside down just to get that different perspective. He used to love watching the news ticker at the bottom of the screen and try to see where the words disappeared to. The boy has a very good attention fo…r detail. But one thing C does that we all could learn from is how he “adjusts his perspective” towards people. When C looks at a person he simply sees a person. He doesn’t see skin color in the way our world has often come to see it.. He doesn’t see and judge “the outward appearance” of the person as we tend to. He doesn’t notice or care if the person is wearing the latest pair of Nikes or Wal-Mart specials. He doesn’t see a person with a disability that might do things a little different than the rest. He doesn’t have within him the ability to stare at a person because they may look or behave “weird,’ nor has he learned the art of making fun of people as other kids his age are learning to do…and some adults continue to do. He simply sees the person. I love you, my son, for having this great ABILITY the rest of us struggle with so much. Mighty God, give us the ability to adjust our perspective of people to how you seem them. Amen.
“…For the Lord sees not as man sees: man looks on the outward appearance, but the Lord looks on the heart.” 1 Samuel 16:7
What autism has taught me – Day 17:
Every day is Groundhog Day. I have to be honest, I didn’t know about this idea of “every day is groundhog day” until Candace informed me. I guess I had never watched or paid much attention to the movie. For those who don’t know, in the Movie “Groundhog Day” starring Bill Murray, every day Bill Murray’s character woke up he was reliving the same day over and over, and over again. This repeated day in the movie just happened to be February 2n…d, which is Groundhog Day. Perhaps a lot of you feel the same way and don’t even have a kiddo on the spectrum. Let me tell you, this takes it to a whole new level. Not just because of the routine with therapies and such. It’s often because a child, and even adults on the spectrum, need that routine. They need to know exactly what is coming next and any deviation might lead to a “meltdown” For instance, every night at 7pm (give or take) we start our children’s worship dvds/devotion/prayer time. Every now and then something will come up that has us out later than expected or were just flat out tired, and so we’ve tried to skip the devo time and head upstairs for the next phase. Oh no, Camden will call us out on it. He needs his Jesus music time. (I suppose it’s handy for that part of the day, right??). Camden has become more flexible in deviating from routine, but he’ll still let us know when he’s not happy about it. So, yes, every day is Groundhog Day, with a few twists thrown in every now and then
“This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:24
*Candace Russell And heaven forbid I pick him up from school early. smile emoticon The boy needs completion and routine. His mama doesn’t necessarily help with getting him to adapt in this area. I am a tad found of routine myself. Just like in the aforementioned movie, hopefully repeatedly practicing GroundHog Day gives us opportunity to learn and improve and not lose our minds. smile emoticon He’s so funny.
*To be honest, I am not a fan of change. I guess that is why I got sick to my stomach on the first day of school.
What autism has taught me – Day 18:
I’m struggling to find an appropriate title for this one, but let me try to describe. Some of our friends on the spectrum, including C, seem to have a deep need for closure, order, completion – perhaps OCD qualities. Let me give you an example. I took the boys to the trampoline park today. They both had a great time like they always do, but right before our time was up C looked up and saw a basketball stuck in the ceiling. He didn’t want the ball so he could play with it, he just knew it didn’t belong up there. Well, he became quite agitated that we were leaving with the ball still stuck in the rafters. Ten minutes later he is still upset to tears thinking about the ball (see attached picture of eyes). Another example is let’s say he drops an almond on the floor, he fixates on that one almond until it’s picked up. He just can’t let it go (I guess there’s a certain respect for that one). One more example that just cracks me up, about three years ago we were at Texas Roadhouse and C kicked his highchair back and it started to flip back. I was able to grab a piece of the chair in time to at least soften the impact, but C’s leg was hurt in the process – he didn’t want to walk on it for some time. After we got home Candace put a blanket on the floor in front of the TV for him to rest on; he didn’t move from that spot for the rest of the afternoon. Later on he wanted me to help him up to go to the bathroom. He was holding on to me as he walked, slowly and gimpy to the bathroom. On our way he noticed one of the coffee table drawers was not completely shut. This guy stops, bends down slightly and pushes the drawer all the way in. Evidently he just couldn’t stand it being ajar ever so slightly. I have to admit The Big Bang Theory sitcom makes me laugh. One of my favorite episodes is the one titled “The Closure Alternative” because it made me think of C. In this episode Amy tries to help Sheldon with his “closure” obsession where he has to make sure that everything is completed. Amy takes Sheldon through a series of OCD Exercises where she won’t let him finish things to help him with his compulsive need for closure. After Amy leaves Sheldon runs through all the exercises again, but this time completing them. He then rolls over on the floor appearing to be in ecstasy. I was thinking – that’s my boy!
What autism has taught me – Day 19:
That mainstream medical practices aren’t always best. Did I say that? Yep. Just because its recommended (to soft of a word?) by the American Medical Association or the CDC doesn’t mean it’s appropriate care for ALL patients. There is no cookie cutter medical care. I’m not saying that there aren’t medical practices that are appropriate for a large, perhaps majority, of people. But there is also a population of people where some practices may do more harm then good. And in the words of Mr. Gump, “That’s all I have to say about that.”
What autism has taught me – Day 20:Don’t stop trying something no matter how epic the fail. I know this is a rule we all should probably live by, but it’s a critical element in regards to autism. That first, second, third attempt may end in a complete meltdown – not to mention how the child responds wink emoticon, but you have to keep trying. That sounds so cliché in saying, but sometimes the experience is so disheartening, so draining both mentally and physically – just a total spirit crusher – that you vow to yourself never to try that again. But the truth of the matter is you can’t fulfill that vow; you can’t give up. And so you keep at it with the hope of “next time.”
What autism has taught me – Day 21:
Why a Gluten-free/Casein-free diet is often beneficial if not necessary with an autism diagnosis. It certainly has been a significant benefit for Camden. In her book Gut and Psychology Syndrome (GAPS) – Natural treatment for Autism, Dyspraxia, A.D.D, Dyslexia, A.D.H.D, Depression, Schizophrenia, Dr. Natasha Campbell-McBride(MD, MMedSci(neurology), MMedSci(nutrition) provides a rather simplistic explanation for this:
“Everybody knows that… the main purpose of having a digestive system is to be able to digest and absorb food. Scientific and clinical experience shows that without healthy gut flora the digestive system cannot fulfill these functions efficiently. A good example is the digestion of milk (casein) and wheat (gluten) proteins, which happens in two stages. The first stage occurs in the stomach where, under the influence of digestive juices produced by the stomach walls, milk and wheat proteins get split into peptides, some of which have morphine-like structures called casomorphines and gluteomorphines (or gliadinomorphines). It is a normal process and happens in all of us. Then these peptides move to the small intestine where the next stage of their digestion happens. They get subjected to pancreatic juices and then reach the intestinal wall where they are broken down by enzymes, called peptidases, on the microvilli of enterocytes. This is the stage which is missing in people with abnormal gut flora because of the poor state of their enterocytes. As a result casomorphines and gluteomorphines get absorbed into the bloodstream unchanged and cause problems in the body, in particular interference with brain function and immune system function. There has been a considerable amount of research in this area in patients with autism, schizophrenia, ADHG, psychosis, depression and auto-immunity, who show high levels of casomorphines and gluteomorphines in their bodies, which means that their gut wall is in no fit state to complete appropriate digestion of these substances. Clinical experience shows that when the gut flora is restored, many GAPS patients can digest casein and gluten in moderate amounts without their symptoms returning.”