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.

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