Talking to Camden’s 2nd Grade Class about Autism

I visited Camden’s 1st grade General Education class last year to talk about autism. His 2nd grade inclusion teacher was super supportive about having me come this year as well. Autism Awareness Month is a natural time to go into the classroom, but I can see how it would probably be more helpful for me to go sooner…after the students have gotten to know Camden a bit, but before the end of the year. They had a lot of good and sincere questions that they may have been wondering about for months.

Here is the letter that went home to the students. (It is almost identical to last year’s letter, as I haven’t found a book that I like better. Would love to hear suggestions if you have some.): parent letter image

I had 45 minutes to share, and it went FAST! The kids were extremely attentive, kind and engaging! I introduced myself and we jumped right in with this 4-minute Amazing Things Happen video.

We went over the three main characteristics of autism:
1. social impairment
2. struggles with speech/communication
3. repetitive behaviors12891488_10154091992909283_1672379358648847446_o

I tried to make sure the students knew that I was sharing Camden’s autism. There is a saying that goes, “If you’ve met one person with autism, then you’ve met ONE person with autism.” Autism is a spectrum disorder, meaning that has a broad range of what it looks like from person to person. Just because Camden likes/dislikes/does certain things, does not mean everyone with autism is like him. One of the challenges of autism is that it is an “invisible” disorder, meaning you can’t see it. If someone has Down Syndrome, or is deaf, or is paralyzed, you can see it. Many times, a kid with autism may appear to be a brat if they are having a meltdown. Maybe it looks strange to see them wearing noise-cancelling headphones at a basketball game. It might seem rude when they don’t respond to your question. Unless you know that someone has autism, sometimes people make assumptions. yoder visit 2

We discussed some of the statistics of autism:
1. 1 in 68 US children have autism.
2. 1 in 42 US boys have autism.
3. I didn’t go over specific numbers on wandering/drowning/bullying, but
discussed that the rates are significantly higher for those with autism.

I shared about Camden’s early days, and we talked about the difference between classic autism versus regressive autism. Camden falls into the classic autism category, as he missed milestones early on. We received in-home early intervention services from a speech therapist, occupational therapist, behavior therapist, nutritionist, and physical therapist. Camden was an extremely fussy baby with significant gastrointestinal issues and a sleep disorder that still persists to this day. I would share concerns, and was told “he’s just a boy”…”you are worrying for nothing”…”just let him be him”…”one day you’ll be begging for him to be quiet”…etc. Our in-home therapists, our pediatrician (who never even gave us the 15-month screener for autism), friends, and family members felt that  my concerns were unfounded and that there was nothing to worry about. ONE friend told me it was a good idea that I was getting Camden evaluated as she did see some red flags. So for my family (and numerous others who share similar stories as ours), when I read that the rates of autism are going up because of better diagnosis, I have to admit that is not our story. Camden does not have high-functioning autism where you are trying to decide if he’s just quirky or if it really is autism. If you’ve seen or met Camden, there is no doubt that he has very significant delays in each of the three main areas of autism.

I shared this quote with the students:not being able to speak quote

We talked about some people who were perceived as not being smart because they couldn’t speak or had altered speech, and we discussed how frustrating it would be to have people discount you or assume you aren’t smart simply based on your speech or lack thereof.

My uncle is deaf and was in special education during school despite being extremely intelligent. He has his doctorate in Education and is an amazing educator. He was teacher of the year for his district last year.

I showed this picture of Carly Fleischmann and told the students a little bit of her story: carly

Carly was diagnosed with severe autism and speech apraxia and the age of 2. She is nonverbal. Doctors said she would never progress beyond the mind of a small child. At the age of 10, she made a huge breakthrough when she typed “HELP TEETH HURT” on a computer. Her parents and therapists tried to get her to communicate through typing, but she refused for months. One of her therapists, Howie (pictured above), decided that if she wanted something, she would HAVE to type it. They knew she had the ability, but she needed to be pushed. It worked!! Today, she types with one finger and she has found her voice! She still struggles with OCD and communication, but she has proven that you can’t judge a person just from what you see. Her IQ is over 120 (above average) and she has a talk show called “Speechless.” Carly now prefers to use a communication app called Proloquo. You can learn more about her story in this 7 1/2 minute 20/20 report.

I showed a picture of Niko Boskovic and we talked a little about his story: letterboard

Niko is a young man who is non-verbal with autism. He started using a letter board (through the Rapid Prompting Method) after he and his mother attended a Rapid Prompting Method workshop in 2015. Niko’s mom always knew and believed that her son was smart…she just didn’t know how smart until he was able to communicate with the letter board. Before the workshop, Niko had been in special education classes. I saw on his blog where he posted a picture of himself on the first day of school the year that he started attending general education classes. Here’s what he said: “Today is the first day of school. I am looking forward to it because I want to learn so much. Happiness is knowing that I am late to the game, but I can still play.” 🙂 I was amazed by this 5 minute video highlighting Niko’s story.

I gave the students two examples of when Camden’s voice went unheard. Pear-8

Camden takes leftovers in his lunchbox, so I package it up when I am making dinner. One night, I had put his entrée, fruit, and drink in his lunchbox, put it in the fridge, and then we sat down to eat. That night the pears were disgusting! YUCK! We couldn’t handle the taste or texture, so we threw them out. The next day, when I picked Camden up from school, his teacher mentioned that he didn’t want to eat his fruit, but she had him finish it since she assumed he was just protesting. As soon as she told me, I felt horrible, as I realized at that moment that Camden still had the gross pears in his lunchbox that I had packed the night before. Can you imagine? Having to eat something gross, but not being able to tell someone (or get someone to listen) that you did not want to eat it? But since you struggle with communication, you were forced to do what you were told. That would be hard. *Apparently, Camden’s classmates mentioned this story several times to his teacher today. Please know, that this was no one’s “fault.” It was unfortunate. I wish I had thrown out the pears, but it slipped my mind. Camden’s teacher had him eat the pear, because I encourage the staff to have him eat since I send him with a reasonable amount of food. 99% of the time, Camden finishes his school lunch with no problem.

Camden went through a time when he loved watching the Cars movie and playing with his character cars. One night, he was playing with his vehicles from the Cars movie and I heard him say something about “Doctor Hudson.” I was making dinner, but briefly explained to Camden that the car’s name was Doc Hudson, not Doctor Hudson. He kept on playing. This happened at least three more times until several days later, Camden brought me his dvd player, and said, “Look.” The screened was paused on this picture: Doctor_hudson_dr_of_internal_combustionIt’s as if Camden were telling me, “Look lady…I know WAY more about the Cars movie and characters than you do. You make the dinner. I’ll know the stuff. Please listen to me. Just because it’s hard for me to speak does not mean that I don’t know what I’m talking about.”

And I wonder how often things like that happen for my kiddo.

my-brother-charlie-bookWe read the book My Brother Charlie. It’s written from the perspective of an autism sibling. Colorful illustrations and it’s good about discussing some of the challenges and joys of having a sibling with autism.

I received the students’ questions ahead of time. I found their questions interesting and insightful. Some of the questions were easy to answer. Some of them I had to take my best guess. And some of the questions don’t have easy answers.

  1. Does Camden like sports? I would venture to say that he enjoys watching sports more than playing them. But then again, he sure looks like he’s having fun in PE! He likes being in the pool, riding his adaptive bike, and going to Top Golf. If monster truck driving is a sport, then that might be his favorite to watch. =)
  2. What does he do in speech? Camden had his private speech session the day before, so I brought real-life examples of what he’s working on. Things like pronouns, prepositions, choosing the object that does not belong, using clues to guess an object, etc.
  3. How do you get autism?  I made sure that the students knew that autism isn’t contagious. It’s not something you catch like strep or a cold. And that just because they may feel like they have one characteristic of autism (like maybe social situations are really hard), that does not mean they have autism. They would know by now. I touched on the difference between classic autism and regressive autism. But mainly I shared that we don’t know for sure how people get autism and that researchers are working hard to learn more.
  4. What would Camden like to play with me? Camden LOVES recess, and will get upset on the way to school if it’s a rainy day and he can’t go out.  He enjoys racing sometimes. He likes playing on the playground equipment. Oftentimes, he enjoys watching other people play. I’ve seen him at the top of the slide just looking out and taking it all in. Like with any friend, it’s important to try and read his body language. Does it seem like he’s smiling and having fun?…then keep it up! Does he seem frustrated and like he needs some space?…then maybe give him a little time. Feel free to ask a teacher for suggestions.
  5. Why does he say “no” when I ask him a question? That’s a good one! My best guess is that Camden’s routine is so important to him, that if he hears a question like “do you want to go to the gym?,” he stresses that his schedule is going to change. Past and future tense are also hard concepts for Camden to grasp, so if you ask him, “Did you go to Medieval Times last night?,” he will say “no thank you” for fear that you are going to make him go NOW.
  6. Why does he make noises sometimes? That’s another good question that is somewhat of a mystery. I’ve heard some people with autism say that it’s to self-regulate when there is a lot going on around them. For Camden, he seems to do it most when he’s happy and excited. Sometimes he can be noisy when he’s scripting or reciting lines from movies, commercials, or books. He’s always working on memorizing something, and he will script it until he’s got it down.
  7. What is his favorite thing to do? On normal days he certainly enjoys electronics (his iPad and dvd player) as well as riding bikes, jumping on the trampoline, going to the park, racing his remote controlled car, swinging, etc.
  8. Why doesn’t he stay in our class the whole time? Our campus has a program for students with autism that’s called STC, or the Structured Teach Class. While inclusion time is really important for Camden to learn communication, social skills, and to work on academics, he seems to learn new information best in a 1:1 or small group setting. Special education students have what is called an IEP (or Individualized Education Plan), where goals are made specifically for that student based on his or her needs. Here’s the way our district defines the STC program: The Structured Teaching Class (STC) is a centralized, self-contained instructional arrangement designed to meet the needs of students who have characteristics associated with autism. STC provides a high degree of structure, a low student to staff ratio, and systematic use of a variety of research based interventions to enhance instruction, develop communication skills, and manage student behavior. Students have the opportunity to participate in many academic and non-academic activities with their non-disabled peers. STC classes are located on several general education campuses throughout the District.
  9. Does he like to watch movies? YES! Camden likes the Toy Story movies, Cars, movies about trains and vehicles, and he loves educational videos. He often will set the TV or video to closed caption so that he can learn the words while he watches. If Camden is in charge of the remote, it can be hard to watch with him as he likes to rewind his favorite parts or the parts he’s trying to memorize over and over and over again.
  10. Where is his favorite place to go? Hmmm…he really enjoys places like Great Wolf Lodge (actually, any hotel) and Medieval Times, but I would guess that camping and the beach are his most favorite places.
  11. What is his favorite food or place to eat? Camden is on a special diet due to allergies and gastrointestinal issues, so he doesn’t love a lot of the typical foods and restaurants that many kids enjoy. He does love mangos and chips. He typically eats a meat, veggie, and fruit for meals.
  12. What does Camden like to do when he gets home from school? Well…most days Camden has what is called ABA therapy after school. He has people that work with him on communication, play skills, social skills, academics, etc. After therapy, he gets some free time on electronics before we eat dinner. Here’s a picture of Camden with one of his therapists. He was working on his speech for the Living History Museum. We have a room set up in our house that’s kind of like a classroom. audrey

I gave the students a 4×6 picture of Camden. The photo had some possible similarities and potential differences listed. We talked about how we are all special and unique, and how we all have things that make us different.

DSC_1423

I shared this 2-minute video about Dillan, a teenager with autism who is nonverbal. Thanks to the iPad, Dillan is able to communicate. I am so amazed and excited to see stories like this of children who are able to find their voice in this world.

I printed this booklet titled Growing Up Together to send home with the students. It’s an easy read that touches on what is autism, how kids with autism act, why children with autism may act a certain way, what causes autism, and how to be a friend to someone with autism. Here are the tips on how to be a friend:

When you become a friend to a person with autism, you both learn a lot from each other. Here are some ideas that can help you be a better friend to a kid with autism: •  Accept your friend’s differences. • Know that some kids with autism are really smart, just in a different way. • Protect your friend from things that bother him or her. •  Talk in small sentences with simple words and use simple gestures  like pointing. •  Use pictures or write down what you want to say to help your friend understand. • Join your friend in activities that interest him or her. •  Be patient – understand that your friend doesn’t mean to bother you or others. •  Wait – give him or her extra time to answer your question or complete an activity. •  Invite your friend to play with you and to join you in group activities. Teach your friend how to play by showing him or her what to do in an activity or game. •  Sit near your friend whenever you can, and help him or her do things if they want you to. •   Never be afraid to ask your teacher questions about your classmates with autism.  • Help other kids learn about autism.

My time was up, and I looked at the precious faces of those 2nd graders and I thanked them from the bottom of my heart for being kind and respectful toward Camden. I thanked them for being good role models for him. I told them how much it means to me to see Camden at school with his peers…to see him included and learning and having fun.

We are so incredibly proud of Camden and who he is! He works really hard and has come so far. He is dearly loved by his people. =)

 

 

 

2016 Autism Awareness Tees

World Autism Awareness Day is April 2nd. Last week I shared my thoughts about autism awareness, what awareness in action means to me, and our newest t-shirt design.

Counting on Hope began as a way to help with our family’s expenses. My husband and I desire to do all that we can within our means to help our son, Camden, be as healthy as possible. We adore him just as he is, while continually raising the bar to help him be his very best. Especially when the boys were younger, I wore a lot of autism tees. I wasn’t willing to stop getting out and about, and the shirts were an attempt to wave my white flag for understanding when Camden was struggling. Instead of buying other people’s shirts, I decided to put my own together. Up until now, I’ve kept a surplus of inventory. This approach hasn’t really benefited our family in the fund-raising department, which is why I am moving over to a pre-order format (think Sevenly).

We are offering FOUR designs for our Autism Awareness pre-order. And guess what??? They are available all the way from youth small to an adult 3XL!! The deadline to order is 11:59PM on Sunday, March 13. Orders will ship on March 23. preoder final


This green V-neck is our newest design. Click here to find it on Etsy.
Green AU teeI’ve had lots of requests for a V-neck design, and I finally listened. This tee honors both of my boys. Autism shows a glimpse into Camden, and the green reflects my little guy, Carson, who was born on St. Paddy’s Day. Green is his favorite color. =) This shirt runs true to size. It’s 50% polyester and 50% cotton jersey knit. In this picture, my husband is wearing the large and I am wearing the medium:
Brian Candace Green TeeHere’s my friend, Leslie, in the small:

**While most people find the shirt true to size, it’s important that you check the size chart to see what would be best for you.
ADULT SIZE CHART:
Green Adult Size Specs
YOUTH SIZE CHART (The youth shirt is a dark heather grey and is a 50/50 cotton/poly blend):
Kid Green spec cropped


Here’s our Different Not Less tee. I first heard that phrase from Temple Grandin, and liked it. Click here to see it on Etsy.
Puzzle_final mock-upThis shirt runs true to size and is quite forgiving. You’ll want to do your queso eating in this design. It’s 65% polyester and 35% cotton. It’s a soft-style and super comfy. The color is called Heathered navy, but everyone calls it grey. Here are some folks in the Different Not Less tee:
DNL tees
**While most people find the shirt true to size, it’s important that you check the size chart to see what would be best for you.
ADULT SIZE CHART:
DNL Adult Specs
YOUTH SIZE CHART:
DNL youth specs


Next is our Autism flag tee. Click here to find it on Etsy.

It’s not really the autism flag, but it should be. It has the traditional colors depicted for autism as well as the puzzle piece. This tee runs true to size and is 90% cotton and 10% polyester.
Autism Flag TeeHere I am wearing the medium:
Candace Flag Tee
And Brian in the large:
Brian large flag tee
**While most people find the fit true to size, please check the sizing chart to be sure.
ADULT SIZE CHART:
DNL Adult Specs
YOUTH SIZE CHART:
DNL youth specs


The last design available for pre-order is our Autism Awareness short-sleeved baseball tee. Click here to find it on Etsy.

This baseball design was the first we released. It’s currently available in the short-sleeve raglan and the short-sleeve 2-button baseball jersey. Click here to find the short-sleeve raglan on Etsy and here for the 2-button jersey.
BBall SS RaglanIt’s 100% ring-spun cotton. Light-weight shirt with a grey torso and navy sleeves. Please note that this shirt tends to run a size large on women. I am typically a medium, but wear a small in this. Most women find this to be true, but it’s up to you to check the size chart to see what would work for you.
ADULT SIZE CHART:
Adult Bball specs
YOUTH SIZE CHART:
Kid Size BBall specs
The baseball tee also comes in this 2-button baseball jersey. Click here to find it on Etsy.
HenleyThe 2-button baseball jersey is Heathered-grey. It’s a 50/50 cotton/poly blend.
It runs true to size, but please check your measurements in the chart below:

ADULT SIZE CHART:
Henley Adult Specs
YOUTH SIZE CHART:
Henley Youth Specs
THANKS A TON for stopping by to see what we have to offer! Hope you find something for yourself, a teacher/therapist, or a loved one!

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!

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.

What Autism Has Taught My Husband (Part 2)

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. You can read Part 1 here.

Before posting Part 2, I totally forgot to share this last week, but you just gotta see my sweet boys singing “He Arose” for Easter. Love seeing and hearing them singing together about the resurrection of Christ. Does  this mama heart good!

He Arose from Candace R on Vimeo.

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 8: (Not gonna lie, this post got kind of long).

The importance of a good team. This very well could be the most important lesson in this series, for Camden wouldn’t be where he is today w/o the tremendous value of each player’s contribution(s) to Team Camden.

Camden’s EARLY INTERVENTION team started with a great bunch of gals (ABCBA -Jennifer, Early Intervention Specialist -Lindsey/Tosha, OT -Michelle, SLP -Andrea) from ECI (Early Childhood Intervention). They did A LOT of the “heavy lifting” as they laid the groundwork for Camden’s ABA (Applied Behavioral Analysis) therapy. This was all very new to Camden and these gals endured some very fussy/yelling sessions. I tell you it was very difficult to watch and hear as a parent, but we knew it was necessary for Camden’s development. It was Michelle that would do the difficult thing and left us with some literature – essentially an autism checklist, as these interventions began before we even had an autism diagnosis. I say difficult because who wants to tell or suggest to a parent that their child may have autism. Thanks for loving Camden enough to do that. And thank you, ladies, for your EXTREAM patience and nerves of steel

At the age of three, Camden would progress to Lawson Early Childhood School – our district’s preschool program for children with disabilities – where he would meet his EDUCATIONAL/Preschool team (Teacher -Jami, Paraprofessionals -Missy/Maribel/Genesis, SLP -Roz/Sarah, Assistant Principal -Mrs. Gerig). Camden was greeted with much love (a recurring theme) and continued to flourish under their training and instruction. It was very difficult sending our three year old off to school, but these gals were the perfect fit for Camden as they stretched him to do more and more. Camden continued to make steady progress (it’s a marathon) in many areas including potty training. Can I get an AMEN for that alone! And I would be remiss if I didn’t mention one of the assistant principals, Mrs. Gherig. She recognized how hard it was for Camden to transition from the car to school in the morning so she became his personal escort.

At age five Camden transitioned to kindergarten where he met his EDUCATIONAL/Elementary team (Principal -Judy, Teacher -Brandi, Paraprofessionals -Maria/Jackie, SLP -Sheaffer/Stephanie, OT -Sondra/Helen, Adaptive P.E. -Janice, Music Therapist -Jessica). Enough can’t be said about this team and how well Camden responds to them. At dinner time we each share a blessing for the day and Camden often says Ms. Brandi. They too continue to stretch Camden AND his parents as they’re talking some business about taking Camden on a field trip. Yep, get on a bus and go somewhere kind of field trip. We hope and pray this will be our team for several years to come. Additionally, I can’t leave out Dr. Foster on his educational team. Dr. Foster leads the special population for our district. He has been vital to our team in many ways.

Camden’s MEDICAL Team -Barry Smeltzer MPAS, PA-C and his wife, Linda. Barry’s goal with his patients is to heal the underlying issue(s) and not just manage the symptoms. Barry has been instrumental in helping Camden’s gut to heal, which is where most of these underlying symptoms occur. While Barry seeks to heal the gut, Linda seeks to get good foods into the gut. I mention the other day Camden went from eating a rotation of two to three foods to practically anything we give him with the exception of grapes and blueberries (they engage his gag reflexes for some reason) and Linda was a great resource, coach, and encourager for Candace in this process. I love their personal story and their passion for healing our kiddos.

Camden’s SPIRITUAL team – The leaders and volunteers in the Kids Incredible program at First Baptist McKinney. This isn’t just a place to drop kids off so their parents can attend a service/Sunday school. It’s an intentional program with bible lesson and crafts. Camden always has a craft to bring home. One Sunday he brought home a crown “hat” that he made in regard to the lesson. He enjoyed wearing it until a swift wind carried it away. Camden was quite disappointed, but the team came through and helped him make another one the following week. For more on this see Day 4.

Camden’s SUMMER team – Jessi, Kerry, and crew at Child’s Path. Their slogan, “Preparing the child for the path not the path for the child”, offers valuable insight into their mission. We are grateful for this team that allows Camden to thrive in a different setting with diverse experiences throughout the summer. Their efforts are fruitful and their love abounds.

Camden’s PRIVATE SLP/OT (Rebecca at WalkEZ TalkEZ and Ces at Sensibilities). Though Camden does not currently receive private speech & OT, we are grateful for their prior work with Camden as well as their continued presence in our life as supporters and encouragers. We are richly blessed by you.

Camden’s FINANCIAL SUPPORT team – Without this team Camden would miss out on many services and opportunities. Many thanks to all our friends at LifePath Systems, Prosperity Place, Masonic home and school of Texas, Variety of Texas, National Autism Association of North Texas, FirstHand Foundation, and Ambucs. Thank you so much for your support. If you’re heavy on money and light on places to give, may I suggest one of these organizations above.

Last but not least, Camden’s FRIENDS & FAMILY team (which pretty much includes everybody above as well ). Don’t know what we would do w/o you. Y’all are very special to us and play an important role – the role of you. Thank you for all you do and say to encourage us and love us (extra cool points if you’re still reading this). To God be the glory.

* So glad you have a great team!!
* Candace Russell So incredibly grateful for all the amazing folks on “Team Camden!” Before Camden turned 3, I always say it was the grace of God, the ECI gals, the CCC congregation, and my pals at SuperTarget (and the many calls to my mama) that got me through the darkest of times. We do have some of the most incredible people loving on our big guy and helping him to become his very best.
*Brian Russell So much more I wanted to say and so many more people to name, but had to keep the length somewhat realistic.
*Your family is truly wonderful. Although many do not even consider their own role in this journey – Candace and Brian you should be applauded for never giving up, seeking health and knowing Camden has so much to offer this world. You stayed together as a couple, as a team and as his parents. You sought out what Camden needed and made it happen!! Many do not know that our community has the highest divorce rate – 80%+. This journey of Autism is like no other and you all really need to cheers your hard work and your dedication to your family. We are honored to be apart of your team. xo
*Candace Russell VERY kind of you, L. Thank you. I am indeed grateful for a loving and supportive spouse.
*Brian Russell Don’t steal my thunder for another post, Linda. Thank you for saying.
*Well we can just say I gave a sneak peak of how rockstar parents handle an Autism diagnosis:)
*What an amazing story of love <smile emoticon>
*I see a book deal in the future!
*It is amazing how connected you are to the “team” throughout the years. Hunter still has very special members of his “teams” over the last 20 years that he has stayed in touch with, including his very first teacher in the 2-yr. old class of PPCD (in VA he got to start PPCD at age 2 with only 4 in a class), and Mrs. Maureen is now a Facebook friend. He has never forgotten the names of his favorite “teachers” either, he can recite them in order by years and names of the schools.
*Candace Russell I love that, L!!
*we are so very grateful for EACH of you!! Thank you for all that you have done to care for our son and our family.
*Yay! So proud to have been a part of TEAM CAMDEN!!!!!!!
What autism has taught me – Day 9:

That a lot of employers still don’t provide any/adequate coverage for autism. Not much more to say about that w/o getting to fired up. Just wanted you to know too. ‪#‎healthcareisajoke‬

*Umm…..yeah!

*Candace Russell AMEN TO THAT! What baffles me are the companies that like to talk about hiring those on the autism spectrum, but they do not want to offer the insurance coverage when they are young that might help them get to the point of employment. Leaves me scratching my head, but not as much as our insurance plan that covers Applied Behavioral Analysis therapy (the most researched, data-driven, effective treatment) but NOT for autism. So a family has a child that is diagnosed with autism and they hear about the importance of intensive early intervention, but many employers do not want to pay for it. That can be extremely discouraging for families. Fun stuff! Back to unicorns and rainbows.

*Dislike

*Brian Russell Evidently Candace couldn’t resist getting fired up about it. Preach it sista.

What autism hast taught me – Day 10:

Eating organic is not cheap. I not sure where Candace heard it, but she refers to Whole Foods as Whole Paycheck. There’s a lot of truth to that…unfortunately. It’s SOOO much cheaper to eat out of a can, box, plastic dish in the frozen section. After Candace and I were married, and before Camden’s diagnosis, we used to price match at Wal-Mart. Candace couldn’t wait to get in the car to check the receipt and ask me to guess how much we saved. We could be millionaires in a few years if we could go back to that system. Now, $4.99 for a lb. of organic grass-fed ground beef is a major sale…like buy 15 lbs. kind of sale. Just about everything is double in price if not triple. I’m really hoping the vegetable garden yields a harvest this year. We’ll see. And the notion of getting some chickens to put in the back yard sounds better and better all the time. Until tomorrow.
‪#‎voteforGMOlabeling

*Candace Russell Still amazes me how little we used to spend on groceries. I used to tell people about Wal-Mart price-matching…”If you only price-match the meats/poultry and produce, you will save SO much money.” Grateful that we have never gone without, and even though I was a tad uneasy about it at first, I am so glad you are overseeing the budget and the we’ve got renewed focus.

*It’s a shame it’s so expensive to eat healthy! I admire you both for all you do to make life better for your boys.

*You found grass fed organic beef for only $4.99/lb?! I thought $5.99 at Aldi was good.

*Brian Russell I didn’t know Aldi rolled like that – organic/grass-fed, that is.

*Easier to do up here surrounded by farms but when the price of beef went up…. Ouch!

*Depends on the Aldi, but the one on the east side of Plano has a decent selection of some organic stuff. Some produce, canned beans & tomatoes, a great jarred pasta sauce without added sugar, etc. The grass fed/organic ground beef is relatively new there. It’s not local, but I can get over that.

*Candace Russell Good to know K. Hopefully we will get an Aldi in McK one of these days. We get ours from Sprouts but it comes from Uruguay so perhaps iffy.

*About to get an order for 6.50 a pound.

*Candace Russell B that is your local gal, right?

*Have y’all ever invested in a beef share (going in with another family on a cow & divvying up the meat after it’s butchered)? I know that is expensive too but I’ve thought about doing it.

*It’s a farm about an hour from here and they’ll deliver to M from time to time. They do whole/ half cows too, but we just want ground beef so that’s all we’ll order.

*Allen just finished our garden. lots of new veggies this year. new compost box too. hope it is a good crop! we need to save too!

What autism has taught me – Day 11:

Your dreams don’t end, they just become different ones. I like this poem by Emily Perl Kingsley that attempts to “describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel”. PLEASE do NOT take from this that we don’t love or except Camden for who he is. We love that little man with all our heart. He brings us so much joy and he makes us laugh all the time. We couldn’t imagine life w/o him and his very precious personality. With that said:

“It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

‪#‎EmilyPerlKingsley‬, ‪#‎welcometoholland‬

*Candace Russell Hands down, I would take Camden and autism over no Camden at all. In a heartbeat. That boy is gold!
*Such a great analogy. It is also exactly how I feel after cancer stole my chance to be a bio-mom.
*Someone shared this with me when B was young and it helped me to make sense of my feelings. My heart still breaks over the things that he will never do that we take for granted, but my heart rejoices in all of his accomplishments. We look forward to seeing him free from his disability in Heaven. It will be such a joyous time! You all are such great parents for Camden. He is blessed to have you and I am blessed to have worked with Camden. I LOVE seeing all of his progress! Amazing!
*Candace Russell So love the way you put it M. The ongoing mix of a heart breaking over what is not and a heart rejoicing over what is. And you are so right…healing is coming one way or another. Thankful to have you as a friend!
*I did a bible study a few years ago where the term “grieving forward” was used to explain how to go through your grief, but keep moving on. It came right after Dave had his heart attack and our life was no longer going to be what we thought or planned. I think of that phrase often, even now, when I still feel ” grieved” over what we have lost, but God is good, and so is our new life! oxox
*It is a true lifetime of grieving, but what I’ve learned is that it ebbs and flows, every low is met with a high. When all his friends were riding their bikes freely through the neighborhood, he was not. When all his friends were getting their license, he was not. When they were all getting accepted to colleges, he was not. When they all posted fabulous pics from their fabulous prom night, he was not — and I cried a lot!! When all my friends talk about their empty nest adventures, we never will. Those times hurt, and they come at different intervals throughout the years, but when there is a victory that happens for him that is so exciting, it makes it all okay again. Like you, Candace we wouldn’t change who he is, and are thankful for how God crafted him. It’s just not Italy.
*Brian Russell True that about the ebbs and flows, L. A little perspective is warranted too. I think of families with a child(s) that will never have the chance to experience the things that we’ve already been able to experience with Camden. Watching him walk, run, climb slides…SAY, “I love you”. I know there are parents and caregivers that long for those things too. Definitely grateful for all of Camden’ abilities.
*Agree!!! C is perfect just the way he is. He was made in God’s image and God doesn’t make mistakes! <smile emoticon>
*I take that to heart! Not just about having a child with different abilities, but just life in general when it doesn’t work out quite like you had planned. Thank you for sharing!!!
*Candace Russell Still cannot believe I didn’t know that J. <frown emoticon> I am so very sorry. M, “grieving forward”…good way to put it. L, have you read Karen Kingsbury’s book Let Me Hold You Longer? I bought it before Camden was born. Read it to Brian a couple of times and he couldn’t help but to laugh as I got all choked up reading it, as I was thinking about my new baby, Camden, going away to college. I remember thinking how hard it would be to see him drive away like that. And now, it’s obviously a different sadness as I realize he may not have the opportunity to drive away. But then I can think about some of my dear friends and family members that are struggling to have a child at all. Sigh.
What autism has taught me – Day 12:

A greater respect for parents & caregivers of special needs kids. I thought I had a fairly good respect of such things. I understood that it must be tough. I just never fully understood how tough it can be, and there was really no way for me to know. My best friend growing up had an older sister with special needs (fully dependent on someone else). I saw the love and care her parents provided. Fed her every meal, bathroom and Hygiene responsibilities, transporting…I mean everything. I went with them on a short family vacation to the baseball hall of fame and witnessed a little bit of the 24 hour care. This sweet girl is now in her fifties and her parents have provided loving care – tiresome, wearisome care – but loving care nonetheless for virtually her entire life. I think of them often as a source of encouragement. I think of them often as I now understand more fully, but not completely, their own experiences in raising a child with special needs. I understand what I’m sure was/is numerous nights of wondering what will happen to my child when I’m gone. I understand what it’s like to bathe, dress, assist in feeding a 6 1/2YO and wonder how much longer will I be doing this. Yet in during what I’m sure was difficult days their faith was strong and continues to this day. They taught me about Jesus, both in Sunday school and by example. I know they prayed for me and loved me as a son. They had all the excuses in the world, but I didn’t see any made. While their journey is different from ours I understand, and I have a much greater respect for them – which is tough because it was already at ceiling level before. And not just them, but all families with a special needs loved one.

“but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31

*Candace Russell such beautiful people!
*Yes, the hugest respect! We got to hear Joni Erickson Tada today and it totally drove that point home. When she talked about having to have her every single need cared for by others, and how overwhelming a job that was, it really was humbling. We, as parents of kids on the spectrum, work so hard on adaptive skills to get our kids more independent, it just takes so much more repetition and practice most people can’t understand that. We used to pick a skill and work on it all summer, like making his own lunch, or one summer it was making scrambled eggs in the microwave. But it took all summer. Teachers would wonder why we didn’t work on more academics “that were more important”. But what I knew as a mom, who would be caring for him for a lifetime, was that the independence would be the most important later, and it has proven to be true. But the teaching and care-giving part just becomes part of your world and the way you operate every day.
*Brian -this is so sweet. I will make sure that my in-laws are able to read it. I know for fact they do love and think of you as a son. Love you and your sweet family!!
*Brian Russell Thanks, T. Crazy love to you and yours as well!
What autism has taught me – Day 13:

That it can be isolating (self-inflicted or not). For us, it was just mentally and physically draining to take our little guy anywhere early on. If the car ride there wasn’t draining enough – literally praying that the traffic lights would stay green so the cries wouldn’t escalate to a whole new level – any place that we might venture to would be spent trying to keep C from a meltdown with virtually little to no socializing. And so we often turned down invitations in favor of sanity. As I mentioned in an earlier post, we stopped attending church for about 6 months because we couldn’t get 5 minutes into the service before getting paged. Candace and I ended up alternating weeks staying with C in his class so the other could enjoy the service, but those efforts just didn’t seem enough to keep up the charade. Please know we had great friends and family that did not isolate themselves from us, though, that is sadly sometimes the case. Instead, they reached out to us and often made generous offers. The fact is, as challenging and monotonous and mentally draining those times were, getting out into a social setting was much more so. While we still have to make sure we’re prepared for various social settings, trips, etc., the isolation days are behind us. But for many, those days still abound, and even others are just entering that season.

” The LORD is near to the brokenhearted and saves the crushed in spirit.” Psalm 34:18

*Come to find out From my niece , my 4 yr old great nephew has been diagnosed with autism. He has a form of epilepsy that causes him to go into convulsions ever so often. Now I don’t know if one has to do with the other. Do you think that it does?
*Brian Russell I’m not learned enough on that, K, to answer with any certainty. I have heard it said that most if not all autistics will experience some form of seizures at some point (I believe it was said in the preadolescent years), but I don’t recall the source or even if it’s true. Perhaps another reader can speak more authoritatively on this.
*Candace Russell K, as you know, one can have epilepsy and not have autism, but it is certainly common for those with autism to have epilepsy. Up to 30% of those with autism also have epilepsy. Epilepsy, allergies, GI issues, etc are referred to as co-morbid conditions of autism. That’s why it is important for a person with autism to be with a medical-care professional that will address all the issues and not say something like, “oh your kid has sever constipation or excessive diarrhea?…that’s just because of the autism.”
*Candace Russell Very thankful those days are behind us. Hopefully, we never forget how it felt so that we can throw a lifeline to others in a similar situation. Not that we haven’t had ups and downs, but I am always thankful that if we were gonna be isolated, at least we were isolated together. <smile emoticon> Hey Mother, remember when Camden (and Carson) would be screaming in the car and you’d tell me that it wouldn’t last forever?…only about 15-24 months. Good times.
*Thanks Candace. So autism COULD have brought on the epilepsy but NOT the other way around, correct?
*Candace Russell Kirby, what I do know is that epilepsy is not uncommon in autism and that I’ve seen news stories and read reports of babies having various reactions which later on was discovered that these kids also had autism. I would recommend Dr. Bock’s book titled Healing the Childhood Epidemics.
*I just found about his (my great nephew’s) diagnosis about a couple of days ago. I knew he had epilepsy.
*Ok Candace. Thank you . I’ll let my niece know and repost her these posts you and Brian have put out ,maybe this will give her a better understanding, as it has me.
*Makes me happy that you are able to do more and more as a family. One thing that makes me happiest as a teacher is when I hear of new successful family experiences. One family was able to enjoy a nice Easter dinner out. Made my day.
*Candace Russell M, I LOVE hearing about and seeing your family’s successes! I admire you greatly, and how you researched, did the work, got up over and over and over again through the night to do what was needed, and you fought for your son’s health. And now you are helping other kiddos. You are inspiring! And K, I hope your neice has a good support system. It makes a world of difference. If she needs someone to chat with, she can message me.
*I’ll see what I can do . Thanks again Candace and keep on keeping on, for all this you and Brian are doing is definitely not in vain.
*Thank you, Candace Russell. God has given me so much by healing my baby! And, He has flung doors wide open for me to help other children on the spectrum and their families!
*I love you guys more every day!! Amen to this post, lived every word of it, got better, went through it all again when he entered teen years, now it’s getting better, slowly again. One things for sure, we know who our true friends are after all these years, and they are gold!
* We continue to Pray for all of you. I know that he is a blessing to you and others. We love you!
*Brian Russell Thank you, M. We LOVE you and T too. Can’t believe it’s been so long.

What autism has taught me – Day 14:

The value of family (again, just reaffirmed it). I hesitate to write this because there may be couples or single parents reading this whose family has chosen to pull away instead of rallying behind them. I’ve read some testimonies where this occurred and its quite heartbreaking to think about. So, Candace and I are very grateful for our family support. Early on Uncle Kerry offered to come and stay with C one Saturday a month so Candace and I could go have some time to ourselves. It usually wasn’t for more than a couple hours, but it was a true blessing for us to be able to have that time.

I remember early on when things got tough and the minutes were long, Grammy came and stayed with us for about two weeks to help out. This was a huge help, especially for Candace during the day when I was at work. Our family as a whole understands and willingly makes whatever accommodations are necessary for C when making plans to be together.

With C’s diet it can be quite challenging when traveling. So when we travel to PA twice a year – for usually 10 plus days – His grand mom asks for the grocery list, which can be very specific, so she can make a Whole Foods run and have the items ready and available when we get there. His aunt and uncle, whose house we stay at, are over-accommodating in making sure we have what we need for C.

Two years ago C’s oldest cousins, Kaila and Kai (I believe 21 &18 at the time) planned a golf tournament all on their own called “Swing Fore Camden” in effort to raise money for his therapies and such. This June they will host the 3rd “Swing Fore Camden” golf tournament, and this year we are fortunate enough to be there to witness firsthand all the love that goes into this event. Candace and I are blown away by this effort. We are grateful to all who support this event in anyway. The emotional support we get just from the thought is more than we could ever ask for. Any money raised from the event is just bonus.

I could go on and on with many more stories of how our family supports us on this journey. We are truly blessed beyond measure and grateful for our beautiful family. Love to all.

“Beloved, let us love one another, for love is from God, and whoever loves has been born of God and knows God. Anyone who does not love does not know God, because God is love.” 1 John 4:7-8

*Candace Russell I am so jazzed that we get to attend the Swing Fore Camden Tournament this year!! Camden’s first-ever unprompted prayer was, “Dear God, thank You for golf carts. In Jesus’ name, Amen.” Not kidding. https://www.facebook.com/events/371898182996712/
*LOVE!

I’ve really enjoyed Brian’s posts and am glad that he’s taking the time to share each day during the month of April.