What Autism Has Taught My Husband (Part 4)

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.

To view previous posts:

What Autism Has Taught My Husband (Part 1)

What Autism Has Taught My Husband (Part 2)

What Autism Has Taught My Husband (Party 3)

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 22:

The name of Jesus will STILL be praised.

He Arose from Candace R on Vimeo.

*Wow! Love this!
*Candace Russell I love hearing them sing! L or L, do either of you know the name of that sweet, 28yo, nonverbal gal with autism that was at the conference last weekend? I was blown away to hear some of her story and to read her writings, especially her thoughts on Jesus. Her book of poems was incredible.
*Love this! I remember singing this song in my Grandmother’s church at about the same age.
*Not fair! Tears streaming! What is it about hearing a child you love singing Praise to God?, gets me every time. Z loves to come in and sing with us on Sunday mornings, breaks me up whenever I hear her sweet voice. And your two boys just totally made my day!
*Brian Russell Beth, we sang it every Easter too. I like the version on this dvd better, though.
*Your sweet boys!! Love this!
*Fabulous!
*SO sweet! H loved music from the day he was born, and he was humming songs on pitch way before he could speak at all. I vividly remember when he finally got the words to go with his song “God is so good” and we ran to get the video camera! Of course no sharing on FB or anything like that way back then! God is good– all the time!
*Maybe the best lesson of all!
*Candace Russell Amazing L !! I gotta admit, your boy stuns me with his talents. You guys are such a precious family!
*Brian Russell And all the time– God is good!
What autism has taught me – Day 23:
The generosity of good friends. Can I just say we have some unbelievably GREAT friends. From the moment of Camden’s diagnosis we had friends lining up to help and encourage us. One special friend/family offered to come to our house for a week’s time once a year to watch the boys so Candace and I could get away and have time for ourselves. I believe 2014 was the first year we didn’t utilize this offer, but that was on our end. Before Camden received his adaptive bike this family purchased for us a bike trailer so we all could go for a bike ride as a family. They also open their house up to us twice a year for several days stay as they live near C’s biomedical doctor. This gives us the opportunity to do some fun stuff in the area too like Sea World, Morgan’s Wonderland, etc. When we switched C over to an organic diet, another sweet family brought us a couple bags of organic food along with an envelope stuffed with a VERY generous amount of cash. I’ve had a co-worker offer several times to watch the boys if needed (BTW – If an offer like that is made and not excepted it’s not because we don’t appreciate the offer or trust you. It’s just that it can be exhausting in itself writing up everything you would need to know. Additionally, we just like being w/our boys and don’t want to leave them. :)). There’s SO many more things I could list here of how we’ve been encouraged along the way. Many times it’s just by simple words that let us know you love us and are here for us for ANYTHING. Yes, I would say we are incredibly blessed by the sweet generosity of our friends. Much love to you all.

“So, being affectionately desirous of you, we were ready to share with you not only the gospel of God but also our own selves, because you had become very dear to us.” 1 Thessalonians 2:8

*Candace Russell We could write about this one for days! Both of those families you referred to have thrown life lines to us over and over again. I love having gal pals that weep when you weep and rejoice when you rejoice. Such a gift and reminder that as a friend, you don’t have to have deep profound things to say. The most important thing is just to be there.
*Candace Russell Have to share this pic. We are staying with our pals in SanAntonio/New Braunfels for a few days. Camden loves trains, and here is what was waiting for him when we arrived tonight.
*Brian Russell There is also our sweet friend at http://pinteresttoldmeto.blogspot.com/ that loves to love on mamas of special needs kiddos.
*Brian Russell We even have many friends we’ve never met that have supported us and encouraged us by participating or assisting in the Swing Fore Camden golf event. We look forward to meeting some of those friends this year.
*You guys are easy to love!
*Awww. You two are easy to love and who could not just adore your sweet boys?! Love seeing you two comment back and forth on these fb posts, you guys are really rockin’ this life together. Such a sweet couple you are!
What autism has taught me – Day 24:
Ten Things Every Child With Autism Wishes You Knew (by Ellen Notbohm). We came across this book early on in our journey and I found its words insightful. I will share the first five tonight and the remainder tomorrow. These are very general in nature and not applied equally or at all for all – it’s a spectrum, right?

1. I am first and foremost a child. I have autism. I am not primarily “autistic”. My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings, and many talents, or are you individualize by one trait?

2. My sensory perceptions are disordered. This means that the ordinary sights, sounds, smells, tastes and touches of every day that you may not event notice can be downright painful fro me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself.

3. Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call me from across the room, this is what I hear: “*$<%$@&, Billy. @#%^*&$$.” Instead, approach me and speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language very literally. It’s very confusing to me when you say, “Hold your horses, cowboy!” when what you really means is, “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “This will be easy for you to do.”…Idioms, puns, nuances, double intenders, inference, metaphors, allusions and sarcasm are usually lost on me.

5. Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

*It’s a great book! Just unpacked it out of a box this evening.
What autism has taught me – Day 25:
Ten Things Every Child With Autism Wishes You Knew (by Ellen Notbohm) part two.

6. Because language is so difficult for me I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.

7. Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one right way to do most things.

8. Help me with social interactions. It may look like I don’t want to play with other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation…I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses.

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented…Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.

10. If you are a family member, please love me unconditionally. Banish thoughts like, “If he would just – ,” and “Why can’t she -.” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. (So grateful our family loves Camden unconditionally).

*I definitely love that precious boy!
What autism has taught me – Day 26:
The Warrior Mom (This is a BIG one but was saving it for my favorite Warrior Mom’s b-day!). We’re all familiar with “Mama Bear,” right? Bears usually won’t attack humans — but get between a mother bear and her cub, and she’ll tear straight through you. Threaten her children, and you are in for a world of hurt. Well, let me tell you a little something about “The Warrior Mom.” The warrior mom is mama bear 24/7. It’s a relentless, non-stop, advocacy pursuit for her cub. It’s protecting him, fighting for him, educating herself for him, speaking for him, challenging the status quo, not accepting “no” when a “yes” is needed, it’s standing in the gap – often against mainstream propaganda backed by deep purses, its a flat-out selfless endeavor in making sure her little cub is loved and protected. I know quite a few of these warrior moms. They’re smart, passionate, and fearless. They’re anything but lazy. Their hearts are pure gold and full to the brim with compassion. I am grateful for Camden’s Warrior Mom, the Warrior Moms that Candace loves so dearly and calls friend, and the Warrior Moms community that are out there fighting and making a difference for those affected by autism. You woman are amazing. Love to all.
*Well said. WM are amazing individuals!
*Candace Russell So extremely grateful for the support of my Warrior Mom friends! And for the encouragement and inspiration from those I don’t know in real life but learn from in books and cyber-land.
*Thank you Brian!!
*Aw, so sweet. Strong.
*
What autism has taught me – Day 27:
That Candace and I, as Camden’s parents, who love him and know him better than anyone this side of Heaven, should have the final say for his medical care – not some political bureaucrat trying to tell us what to inject into our child.
*Preach it!
*Candace Russell couldn’t agree more
*Parents know best. Absolutely!!
What autism has taught me – Day 28:
The superhero sibling. The reality is just because Carson (little brother) doesn’t have an autism diagnosis doesn’t mean he’s not affected by it. One of the things Candace and I have been mindful of from the start is to never let Carson get in his head that he’s not important, cared about or loved. We let him know just how special he is to us, our family, and that he too is love immeasurably. He’s still only five, but we’ve never asked him to be anything more to Camden than what we would in a typical brother relationship – to love each other, be respectful to each other, to play, share, and talk nice to each other, etc. But the type of relationship that Camden and Carson have forged over the last 5 years has been something special. Watching them play together is a complete joy. Carson has really been the best playmate for Camden as he’s always asking him to play something or trying to get him involved. I’m certain there are things Camden does today because of little brother’s encouragement. Carson is learning there are a lot of things that he’s better at in doing than his brother, but he sees us helping and guiding Camden and he’ll often do the same. A few weeks ago I was out front with the boys as they were riding their bikes. As I was talking with a neighbor Camden started pedaling his bike down the street to the end of the cul-de-sac. Carson noticed he was taking off by himself and said, “Dad! Camden’s riding his bike down the street by himself!” and sped after him on his bike to make sure he was alright. Just this past weekend Camden started tossing a ball up the stairs and watching it come back done; something he’s never really done before – at least on his own. He did that for about five minutes before Carson joined in by going to the top of the stairs. So they tossed the ball back and forth to each other for 20 minutes. I was actually in shock by how long Camden participated. Camden doesn’t really play with other kids, but he will/does with Carson, and that’s because Carson had to learn how to play with him along the way. I am so grateful for their love for each other and pray it will only continue to grow as they do.

 

*This is an amazing blessing you guys have – the two of them so close even at this young age. Something we sorely needed and missed with H.
*The fact that Camden and Carson are wearing both Mine (#10) and Kai’s (#8) numbers makes my heart happy!
*Great story of two brothers, Brian. You have an awesome family and these are fabulous pictures!
*Precious post. Sweet brothers.
*This one is my favorite. Brought tears to my eyes.
*Candace Russell My fave too! So thankful for our little dudes!
*LOVE!!!
*Awesome
*Siblings are so important to kids with autism because most other kids/people don’t take time to get to know and learn them. Well at least that’s what I’ve seen firsthand.
*Crying again – I love these posts. So sweet.
*Get me a Kleenex!
*
What autism has taught me – Day 29:
A greater dependence on God.
*I think kids in general do that. 
What autism has taught me – Day 30:
Autism awareness/action doesn’t end for us on April 30th. I understand that most people do not “recognize” autism awareness day/month. I know I never used to. So a BIG, “THANK YOU,” to everyone who joined me throughout the month to hear one father’s experience with autism. With that said, tomorrow will come. The puzzle piece yard art will be put away (no HOA note this year ). The autism flag will be lowered and all the signs of autism awareness will be gone. But the truth is every day for us is autism awareness day. It does not come around once a year. It does not take a holiday. There is no summer break. But we keep moving forward. We keep learning. We keep praying. We keep trying new things. We keep failing. We keep progressing. We keep trusting. We keep hoping. And most of all, we keep loving – loving our great God who chose me, of all people, to be the earthly father of these very special treasures, and loving these precious souls with every ounce of my being. Thanks for sharing the journey. Much love to all.
*I’ve loved reading your perspective this month, Brian.
*Candace Russell So proud of you for doing these posts, Love! I think you’ve done such a great job.
*Thank you Brian for your posts. I learned a lot about autism and even more saw the great love you have for your son. Many blessings to your family.
*What a treat to share this month with you– incredible insight and wisdom — something we for sure didn’t have in the early years of this journey.
*Love your great family. So proud of you for sharing a glimpse into your lives. Honored to be your family’s minister and more importantly your friend.
*Well done Brian!
*Thanks for sharing all of this!! You and Candace are so amazing!! God chose well!!! Those to amazing little man are blessed beyond words to have you all as parents!! And I am blessed to call you brother and sister!! Thanks again for sharing!! Love you all!!
*Thank you for sharing!!

*I found out that another niece of mine has a son, who was diagnosed with autism. It seems to be more prevalent than I thought. Thanks Brian and Candice for yall’ s reports of this lest I may not been aware of some of these things about it. Surely, your work is not in vain.

*What Brian’s daily autism post has taught me:
1. Read Brian’s daily posts in private because you will most likely cry.
2. Appreciate the individuality of each child. They are all so unique, so special and have such great gifts. No cookie cutters, but appreciate their special gifts.
3. No matter how ‘stressful’ it might be as to parent your individual child, the only way to keep moving forward is to be thankful that parenting is a gift from God and don’t take it for granted.
4. Appreciate ALL the people in your life that help in your parenting journey. Whether your child has special needs or is just a really fiery red head that loves to test you on a daily basis, you can always lean on and learn from other people.
5. Brian and Candace are truly inspiration people (although I already thought that about them both even before they got married and became parents :))).
Thank you Brian for your posts this month!! I have read them all and if I ever missed a day, I made sure to go back and read it. You are fantastic people and I love you both!!
*Brian Russell Thanks, D.
*I have been reading your daily posts throughout April. I could not bring my self to push the “like” button because I understand dancing on that thin line between counting and recounting my blessings and knowing that there are losses to be grieved. So while I do not necessarily celebrate Autism, I do celebrate you, Brian. I celebrate your bright, beautiful boy and all that he teaches me. I celebrate your little in-house stand-up comedian with the golden heart. I celebrate my friend whom I have loved for a very long time who is real and thoughtful and brave. I thank you for sharing so much from your Daddy’s heart. There is a daddy in my house who, like you, loves his children well. It seems bizarre to have so much suffering and so much sunshine mixed up together, I know. But you keep fighting the good fight. You are standing in front of your little family making trails in the jungle, fighting off tigers, smiling at the monkeys, making this strange life an adventure. You are a blessing, a gift, a treasure and I am grateful to call you my friend.
I so appreciated Brian’s posts. We gals are often pretty open about our thoughts and feelings, but to hear from a dad is not as common. It’s helpful to hear a guy’s perspective. Great job, Love!
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