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. The doing part. I’m gonna share Brian’s first week of posts, but before I do, I want to show you the yard art that he made. He’d made one the year after Camden was diagnosed. With all the rain and wind and the fact that he’s had to make at least three updates as the autism numbers continue to climb, it was time for something new. I like it!
Here we are in April of 2011. This is the first sign that Brian made.
And here’s Camden in April of 2012.
In 2013 the numbers went from 1 in 70 boys to 1 in 54 boys having autism. Here’s Camden in April of 2013.
In 2014, the numbers rose to 1 in 42 boys with autism in the United States. Sigh. Maybe that’s why we have no pictures from last year. Too depressing.
On to Brian’s “What I’ve Learned About Autism” posts. I am also going to include the comments received. Some were enlightening. Many were encouraging.
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 1 – Autism is a spectrum. Hence, Autism Spectrum Disorder (ASD). Unless your life is affected by autism in some way, you, like I previously, only had Rain Man as your source of reference. Not every person with ASD wants to go to Kmart or can count how many wooden sticks fall in a pile like Dustin Hoffman’s character in the movie. True,… there are some kids/adults that are “high functioning” and perhaps have a very unique talent or skill set. But there are also some precious friends on the spectrum that are considered low functioning and are very dependent on someone else for practically every task. Autism cannot be reduced to a single cliché; it’s a spectrum. Like the adage goes, “If you’ve seen one person with autism – you’ve seen one person with autism.”
*Love this. Looking forward to the next 29 posts!
* Candace Russell I am looking forward to reading these throughout the month! Glad you’re doing this. It is interesting how many people think of savants when they think of autism, although less than 10% of those with ASD would be classified as such. And the reality is that the vast majority of those with autism are still living with their parents or in a facility.
What Autism has taught me – Day 2:
Autism taught me that I was way more judgmental than I gave myself credit for. Before autism, if I had seen a kid(s) playing with electronics at the dinner table I would have been ALL over that – thinking how bad those parents are. Or if I saw a child “acting the fool” in the grocery store I would have thought to myself – that child needs a good woopin’. I guess that’s why it was so hard for me to get used to the idea of Camden having the… iPad or DVD player at a restaurant. I could feel all the judgmental eyes on me condemning me for being a bad parent. The truth is, those judgmental eyes don’t have the whole story. But I was them once too. They don’t know that the only way we could get any kind of nutrition in our son was with the help of such devices. They don’t know that the only way Candace and I could enjoy a lunch or dinner out as a family was with the aid of the DVD player. They don’t know that my little guy was fussin’ in the grocery store – not because he was a spoiled, undisciplined brat, but because something in him did not like backtracking down an aisle if I forgot something and had to go back. (BTW – he still does not like backtracking in the car. Just tonight we had to backtrack as we were looking for a new ball field. He was not a fan). For other kids on the spectrum, it’s the noise is too loud, or the lights are too bright, or the buzzing sound those fluorescents make seem like a jet engine to them, etc. But it doesn’t stop at autism. Perhaps that guy letting his kids run amuck just lost his job and is doing his best to cope with the financial burden. Maybe the lady at the store is a single mom with two jobs and is doing the best she can just to keep moving. Yes, autism has helped me think the best first…to consider there may be more than what’s before me. I’m still a sinner saved by grace, but autism has helped me to try to see the person with the eyes of Jesus, not with judgment, but with love, compassion, and mercy. To God be the glory.
Autism has taught me that I’m very confused on what the word “epidemic” means. We can have 12 cases of the measles virus, or 3 people with West Nile and it’s an epidemic. It’s all over the pages of the newspapers and it’s the lead story of any news outlet for weeks. In regards to autism, statistics suggests around 1 in 68 American children are on the au…tism spectrum – a ten-fold increase in prevalence in 40 years. ASD affects over 2 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10% to 17% annually in recent years. Forgive me, but these are the kind of numbers I associate with the word epidemic. Not 10, 15, 20, or 100. Yet autism rarely makes the news nor carries a sense of urgency that these numbers (epidemic numbers I might add) suggest. So, yes, I’m a little confused on what the word epidemic means.
•Autism is the fastest-growing serious developmental disability in the U.S. …Many people only connect epidemic with infectious diseases and essentially pay little attention to the alarming rise. Brian, you know I am a melancholy akin to Eeyore, so in my feeble little mind, it’s hard for me to see much changing until the rates are completely and utterly out of control, and there are many other parents like us that will be coming to the end of their lives crying out to God to protect their precious vulnerable children (who cannot speak up for themselves) from the people who would do them harm.
*Brian Russell Sure, better diagnosis may/probably accounts for some. But the rate of increase far out-paces whatever difference better diagnosis would account for. It’s been increasing at an alarming rate and not enough is being done to determine why that is.
*Candace Russell R, I do understand how that would seem logical. I can only speak from personal experience and from the stories I have heard from other parents, but in regards to better Dx, people thought I was over-reacting re: my concerns about Camden. Our Early Childhood Intervention Coordinator (who has a daughter with Asperger’s) from when Camden was 18 months – 3 years old…our pediatrician…a precious teacher friend who has gobs of AU experience…ALL thought I was WAY off. If Camden were a high-functioning functionally-verbal kid, I’d get that more. But that wasn’t the case at all. I look back over Camden’s records and notes (when I can handle it) and the signs were obvious. We weren’t even given the 18 (or 15, whichever) month screener for autism. But that just us.
* Can one outgrow this?
*Brian Russell Outgrow? No. “Recover”? Potentially, and even that at various levels and usually with early and aggressive interventions. Good question, K, but there’s not a “one size fits all” answer here.
*Candace Russell K, I have two friends (separate families) whose children have lost their diagnosis thanks to a lot of hard work and early intervention. Last year, 2 kids in my son’s class exited the autism program and no longer receive autism or special ed services, as they no longer have an autism diagnosis. Some folks would estimate that about 10% of kids on the spectrum will lose their diagnosis. Typically, the kids that lose their diagnosis are those with what is called “regressive autism”, meaning that they developed typically, and then regressed and lost skills.
The Kids Who Beat Autism New research suggests that one in 10 autistic children sheds symptoms before adulthood. But no one knows…nytimes.com|By Ruth Padawer
*I see. Continue your good work in bringing awareness to all of us that don’t know much about it and hopefully that 10per cent will eventually become 100. Thanks and prayers going up for your success.
*Great conversations!! Raise the awareness! We are reading even if not commenting:)
*I’ve cried tears of joy and ached over your stories thru the years. I was worried with Phillip because of my age when I had him. I pray that awareness is brought to the forefront so more studies will be performed to figure out possible causes (at the very least). I attribute so much to the “crap” put in our food and drink.
* These are great posts Brian!!!!
* Yep, very good point. Very. good. point.
What Autism has taught me – Day 4:
Autism taught me that the body of Christ (the church) is a beautiful treasure (actually it more like reaffirmed it) .The early years of our autism journey was tough; so much so that we took about a 6 month hiatus from church (more on that another day), this was a hard decision. We eventually got to the point of giving church another go and visited a church Candace and I attended in our college years, Central Christian church in Richardson, TX. They did not have a special needs ministry per se, but what they did have was love and they ministered to our family during an extremely tough season. The Children’s minister, Mary Kruse, made every effort to ensure our boys were taken care. There was a sweet couple there, James & Sandra, which served in the children’s area that took great interest in our boys. Perhaps it was because they too had a teenager on the spectrum, though higher functioning, and understood our journey. But I think it was just their sweet spirit. Additionally, one of the worship leaders, Kevin, was kind to let Camden be on stage, touch his guitar, sit behind the drums, in-between services. Camden has always been drawn to music and this simple gesture really touched my heart. Lastly, the senior minister, Hank, met up with me for lunch one day and allowed me to share and cry as he listened (right there in Subway mind you). He reassured me that my guilt for not being more active in serving was unwarranted and, instead, said we want to serve you and your family. We are forever grateful to that sweet congregation and they will always hold a special place in our hearts. As Camden got older we felt the need to find a church that had an established special needs ministry. Candace’s search led us at First Baptist McKinney. They have a special needs ministry for kids of all ages and needs called Kids Incredible. The volunteers that serve in this ministry have hearts of gold and are led by a very special gal, Dr. Melissa Ewing that has that same colored heart. There are so many way cool people that serve in Kids Incredible that I want to list here, but do not want to accidently omit one of these treasures. If you’re one of these peeps and are reading this, just know you’re incredibly special to our family and to our Camden. I am so grateful for this ministry at First Baptist McKinney in allowing us to, once again, be a part of the body of Christ in a meaningful way. And yes, we have even found opportunities to serve. My challenge to you is, if you live in the Collin County area and currently do not have a church to call home…for whatever the reasons, I encourage you to visit one of these churches. Perhaps you’ve wanted to try church again. Maybe you never set foot inside a church. Let me tell you the body of Christ is a beautiful treasure that is waiting to welcome you and love you right where you are. No “cleaning up” needed. And no better time than tomorrow, for Christ is risen. See you there!
*Brian Russell I would be remiss if I didn’t mention my friends over at Ranchland Church in McKinney. They too are ready to welcome you with arms wide open. Point is, find a church to call home.
*Candace Russell I truly am stunned at times to think of all the amazingly beautiful people we have connected with, and how people have cared for us at times when we had nothing to give in return. Central Christian Church will forever hold a special place in my heart. We were a mess and they didn’t mind at all.
* Candace…I believe you and Brian always have given to others in return…for instance your hubby likes to give me a hard time…but he also listened to anything I ever needed to talk about…and just hearing of the journey you have traveled as a family has blessed my heart…
*Brian, this is SO crucial!! When H was born we lived in Fairfax, Virginia just outside of DC, and we found a church in Falls Church where some other Texas “transplants” had found a church home. When we got H’s diagnosis, and even before when we knew things were not “right”, we had incredible support from this church family. They had an amazing special needs ministry that provided “buddies” to go along with each special needs child to Sunday School (or nursery) and it was such an amazing ministry to us during those early years when we wanted to retreat!! Instead we were able to bond with our small group Bible study friends who walked with us through those years and are still good friends even though we left DC before H was 5. It was a missing piece when we moved back here to TX for sure.
*Brian Russell Agreed. And I’m familiar with both the Fairfax and Falls Church areas. I grew up about 80 miles NE of DC.
*So true! Don’t know if we would have made it through the early years without our church family.
*Such a blessing! I love that our church has a special needs group as well. Ours is called Team Access.
*I think many times churches get caught up in getting their members to serve instead of serving their members. But on the flip side… It does take a village. In order for the church to serve its members, the members must be willing to serve. What a blessing to find places that embrace you and want to serve you w/o the guilt. Its what service is all about. We each need to serve and be served… Each in their own time. Am i babbling or does that make sense?
*Brian Russell I hear you, Ro. That’s why the author of Hebrews implores us to not give up meeting together…It’s so that we can both encourage and be encouraged. Some of us may be at a time in life when we need a little more encouragement than what we can offer in return and that’s ok. But God used that time of great need for me to make me stronger so that I can now come alongside the next person(s) in that tough season of life and encourage them. The body of Christ is beautiful that way.
* Yes! What a beautiful ministry your sweet family has become. To more than you know. Happy Easter Yankee… Precious blessings for you all!
*Brian Russell To God be the glory.
* Aw, awesome post!
What autism has taught me – Day 5:
Not to “Presume Competence”. That is to presume what Camden can and can’t do at risk of not allowing him to achieve and adjust his potential. For instance, Camden just got a Cutie out of his Easter basket (how many kids do that, right?), peeled it all by himself and ate it. I don’t know about you, but I prefer to use a knife to get the peeling started. Presuming competence would be for me to think he can’t do that yet and peel it for him – like I’ve done just recently. So, I can’t say I still don’t do this at times, but I do try to be aware and not make so many presumptions on his abilities.
*Candace Russell He does continually amaze me!
*Yes an amazing boy! So special. Enjoying your posts Brian.
* Thank you so very much for sharing these daily posts! As someone who has not had an up close and personal view of these amazing Autism super heroes, I greatly appreciate you sharing your heart this way. I am learning so much from your father’s heart that text books have not taught me. Thank you!
*Brian Russell You’re welcome, L. Thanks for saying.
*It’s hard NOT to do things for your children… Its what we do. Allowing our children to grow and “do for themselves” is HARD. I find myself battling that quite often.
My face lit up reading that he did that for himself! (Ally peels it the same way… And i only use a knife for the regular oranges. Cuties come apart pretty easy!)
*Candace Russell I agree, R. A lot of us gals seem to struggle with that. For me, it’s wanting to do things for Camden so that he knows I love and care about it him, but I am having to retrain my mind to realize that helping him gain independence (at an appropriate time) is loving him. If it weren’t for Brian and for Camden’s amazing team, I can see how I might unintentionally hold him back somewhat.
*Brian Russell Part of the issue here is neuro-typical kids Camden’s age and even younger, like Carson, want to do things on their own and will even tell you quite emphatically. Additionally, I can dialogue with Carson and find out his feelings on the matter to see if he really needs help doing a task, if he’s being lazy and just wants me to do it, or if just a little encouragement was needed. There are times when Camden will verbally request help, but there’s no dialogue.
What autism has taught me – Day 6:
That when someone tells a parent of a special needs kid, “I don’t know how you do it,” it’s not really a compliment. I know the person means well and is trying to be an encourager (and I really thank you for your effort.), but what it can sound like is – I don’t know how you love your child. True, it can be tough and sometimes you feel your at the end of your rope, and options, and ideas. While it is tough, the “not doing” is not an option. While the season is difficult, the doing what has to be done for my child is easy…even if its hard. Perhaps you could say, “I know your in a tough season of life, but you’re doing a great job.” Just something to think about. Know that I love you all and am greatly encouraged by your friendship.
* You guys are amazing! I’ve loved learning and sharing with you… even the little bit you share here has proven to be a blessing! One day… One breath at a time. Your kids are BEAUTIFUL gifts!
*Candace Russell Good insight, Love. I realize that sometimes people just don’t know what to say, so they try to fill space by saying stuff like “I don’t know how you do it” or “God only gives these special kids to special parents.” I know that I am certainly guilty of saying unhelpful stuff. I like this article that was written by a mama whose son was diagnosed with autism at 2, and after years of intensive ABA therapy, recovered and lost his diagnosis.
* Essentially it is about loving that child no matter what, I think.
*Yes, yes, yes!
*This reminds me of several people telling me that didn’t I believe God knew best after I had my miscarriage. I knew they meant well but my heart had just been broken and it really wasn’t helpful. I do tell everyone that I believe you guys are amazing and the insights you’ve shared just continue to show that. Love to all
*Candace Russell VERY good point, Aunt L! Those types of comments can be extremely hurtful. frown emoticon
What autism has taught me – Day 7:
To celebrate even the smallest of achievements. For most, the autism journey is a marathon. Big changes aren’t seen overnight. Typical milestones are met much later than their NT peers if at all. The growth and development is incremental, and a lot of days you just think you’re spinning your wheels. BUT…one day you see your child do something that you never thought the day would come and your overwhelmed with joy. Camden went from not being able to take the 2 inch step down from our garage floor to the drive, to climbing steps one at a time, to alternating steps as he climbed, to being able to climb steps w/o holding on (though he still prefers to do that), to climbing the cargo net to the top at recess, to being able to make his way back up the slide to the top. As most kids, I had fun climbing back up the slide. As a parent, I’m not fond of it because of the “policing” you have to do to make sure no one tries to slide down as someone is going up. But I realize it’s typical behavior. So, I was so proud of Camden when he engaged in some neuro-typical behavior and, just recently, was able to climb all the way back up to the top of the slide. Camden also went from eating two to three different meals to where we now eat 99% of our meals as a family, but it did not happen overnight. In our house we have to celebrate the smallest of achievements because we know that one day Camden will surprise us again with something big.
*Candace Russell SO TRUE! It’s fun when we haven’t seen our PA family for 6 months and they are able to see the changes and growth more clearly b/c so much time has passed. The dinner-time changes are super exciting (sharing meals together, praying as a family, sharing a daily blessing), doing some “normal” fun family activies has been a blast (going camping, going to Sea World, our beach trip, etc), and enjoying our family time in the evenings (singing along to our praise and worship dvds, a simple Bible story, and praying for a family member). Shoot, even just being able to take both boys out by myself without it ending in a migraine is HUGE! #slowandsteadywinstherace
* It’s always fun for us to hear about Camden’s achievements when ya’ll come to visit. His Aunt, Uncle and cousins are always so proud to tell us what’s new!
* THOSE moments… Gold medal Olympic winning.. National anthem singing moments!
*Yes!! All H would eat was about 5 items due to oral motor and sensory issues, all the way to about 4th grade. Then all of a sudden one day, “Mom, can I have a salad?” He started with plain lettuce for a few weeks, went to adding a little balsamic dressing, then BAM ate everything in sight! We are still shocked as we think back on it! But it all started with that silly green salad! And he still wants a salad with dinner every night!
* I am really enjoying reading your posts. They are so insightful, and inspiring. I LOVE hearing about Camden’s successes, and yours as well.
* Candace Russell Here’s the pic that Ms. B sent me last week of Camden independently climbing up and then down the ropes. Woohoo!
*Brian Russell Next up, the rock climbing wall!
*LOVE reading these!!!! Yesterday J’s teacher said he went over to another boy with autism at recess who was in behavior and on the ground crying and HUGGED him and said, ARE YOU OK? Empathy!! So cute and so sweet. The other day I read Brian’s post about not doing everything for our kiddos and I let J cry for help with getting the lid off the water bottle and he did it himself in 10 seconds- I think I don’t give him enough credit or challenge him enough to expand his self-help skills so that encouraged me to try to do that. Thanks for your insights Brian! Love hearing about Camden!
*Brian Russell So sweet of J. Glad to be of services, M!
*Candace Russell M, EMPATHY!!! That’s amazing!!! Fist bump to your little man! And that’s awsome about him getting his lid off and allowing him some independence and opportunity for success. Woot woot!
Next week I will share Brian’s FB posts from week 2. I’d love to hear what you’ve learned if you’d like to share. =)