What Autism Has Taught My Husband (Part 3)

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.

To view previous posts:

What Autism Has Taught My Husband (Part 1)

What Autism Has Taught My Husband (Part 2)

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 married? 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

*Thank you!
*Brian, I’ve been reading these posts for sometime now, and I wanted to let you know that I have truly enjoyed reading and sharing your thoughts.
*Brian Russell Just been told (by my wife) ABLLS is with two Ls. Case in point, right? Do I get credit for at least knowing about ABLLS?
*love that you mentioned the ABLLS (yes, 2 Ls)!
*Candace Russell Good stuff, Love! I was thinking yesterday and today about your job. Remember several months ago when you said, “I could never work from home full time.” Then I said, “Well, cool, b/c I could never have you work from home full time.” And then about TWO WEEKS later you were working from home full time. One of these days we’re gonna have to stop saying “never.” smile emoticon Remember that first day when I served Carson mini muffins from Jason’s Deli for breakfast and you asked if that was really what he was eating for breakfast? Now I am cracking up, but it wasn’t so hilarious that first day. We’ve learned and grown along the way, and now I can say that I am extremely grateful to have you working from home full time. I love that our life isn’t filled with hustle and bustle. I am thankful that you get Camden dressed in the morning and you make breakfast for Carson, but more than anything that you are HERE. You know what’s going on with our family. Thanks for not ever checking out just because things got hard…sometimes really really hard. *Bonus on working from home=money saved on gas, you not having to drive a non-AC truck 40 miles in traffic, timed saved, etc. We have been well cared and provided for.
*This was soooo beautifully written. My heart is full.. Gives a whole new meaning to Stay At Home Mom. They really don’t get to “stay at” any one place for long for all of the advocating for their child/family’s needs to be met. I’m truly seeing so much out of your writings this month. . Hugs
*That message was very refreshing… Candace you and your family are so inspiring! !
*Amen!! Breaks my heart how many of our families in our Incredible Fridays ministry are just single mamas going it alone.
*Brian Russell Mine too, M. But it’s inspiring to see all the volunteers who show up to serve in Incredible Fridays and truly minister to these mamas and couples. I always made it a point to tell the ones who were assigned our boys how blessed Candace and I are by their service.
*Beautiful said. I remember researching until the wee hours of the night. That so described my son’s younger years. Often, I don’t think husbands realize what it takes to get it all done.
*Well said! You’re both amazing parents. Candace has taught me a lot of things over the last couple of years. I love and adore you all.
*Nothing more to say than beautiful. Love you all.
*Okay…so I’m thinking all of these “DAYS” need to be compiled into some sort of reference guide Brian! Candace Russell!!!! This one is sooooooooooo good. You’re a lucky girl!

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 for 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

*This one is my favorite. It’s beautiful and so unfortunately true. It would appear “we” are the ones with the “issue”.
*We could all learn a valuable lesson from how Camden views people.
*Candace Russell Thankfully, he still loves and accepts me despite the amount of time and tissues he has used in his attempt at mole removal on me.
*Whoa! This one really got to me! So beautiful. Thanks for sharing with us. Are you sure you have to stop at day 30?
*Brian – each day I look forward to reading your “what autism has taught me” series. Some of your thoughts have made me laugh – others have made me cry – but all have brought me to a better understanding of families and individuals who are blessed with children with special needs. You’ve put so many things in perspective and you have taught me so many things along the way. What you are doing in sharing your thoughts is truly what this month is all about with autism awareness. I am so proud of you and Candace for sharing all your trials, tribulations and joys – it has been a blessing to me and I’m sure many others – and selfishly I hope you don’t stop on day 30. My love to all ot you – Aunt H
*Brian Russell Thanks for saying, Aunt H.

 

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 2nd, 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.

*Brian Russell There is something to be said for routine when the wife is out of town. #missingmysidekick

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!

*My C has those same things. And I love that episode too! Fav part is the ending when he goes back and finished everything. smile emoticon
*I have to say this one used to be a quirky annoyance and has turned into a serious issue, almost growing by the year. And unfortunately we can’t even watch Big Bang Theory because it is way too much of our reality. Believe me, when it’s in your face every day, it’s nothing to laugh at. frown emoticon
*I’m A LOT like that… I may be able to walk away but it’ll really bother me and keep popping up in my thoughts
*Brian Russell L, with your guy being older, I’m curious if he has an awareness of some of these behaviors he’s doing?
*Candace Russell Wish I wasn’t replying from inside of a van with a leaking windshield during a severe thunderstorm. Fun. But anyways…L, you bring up a good point…these things are kind of cute and quirky until they consume the life of someone we love. Our OT use to explain sensory issues…we all probably struggle to some degree, as it bothers most of us gals to have a loose piece of hair dangling from your arm. We try to find it and remove it, but most of us can still function and carry on even if it is still there. It’s when a person cannot carry on that it moves from a preference/quirk to an obsession. That’s when it is sad and tough. I can tell Camden to let it go and not worry about it, but that doesn’t compute for him.
*Brian, he is aware it is a problem, and we have strategies that we work on with his counselor/behaviorist every two weeks, but sometimes he gets too far “into it” that he can’t pull back and see how to use a strategy, then he just spirals into a full “incident”. I use the word “incident” because “tantrum” is not what it looks like at 21. It is 1-2 hours of argumentative dialogue that goes in repetitive circles, sometimes escalating into aggression, sometimes not. But it always starts with not being able to “let it go”, “move on” or needing some closure of precise wording (even if words have been used that mean the exact same thing). Most of the time the “incidents” correspond to levels of overload, stress, holidays, etc.
*Very interesting read and comments. Definitely affects more than just autism. Both of my kids have interesting anxieties, but Luke’s current obsession is expiration dates on food and drinks, as it equates to possibly getting sick, which is his major fear.

 

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.”

*AGREED. I think most are TOO quick to write a prescription. I’ve really enjoyed learning about natural remedies and alternative medicine since moving up here. My doctors look for the “cause” not just the symptoms. We’re each individually as unique as snowflakes!
*Yes, yes, yes!!
*The same principle can apply to education as well. It is not a one size fits all proposition.
 
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.”
*Goes back to your one size fits all post regarding medicine. I learned that from my dad and again teaching. Not everyone learns the same. Not everyone responds the same. Just gotta keep at it until you find that sweet spot.
*And this is true for all children!! You can’t patent each child the same and I’m learning that every single day. LOVING your daily posts. I’m getting my daily dose of inspiration from Brian each day this month!

 

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.”

*Candace Russell What about the good and free diet? smile emoticon
*Well I’ll be…Very interesting. I’ve never heard of Casein. Getting rid of gluten helped my sister SIGNIFICANTLY with her fibromyalgia. I wonder if getting rid of the other would help more. Thank you for sharing Brian!
We just returned from a wonderful weekend in San Antonio. I’ll share about our trip and Brian’s last segment of What Autism has Taught Me posts next week.
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