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!
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.
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
*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.
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 w…e 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.
*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.
*About to get an order for 6.50 a pound.
*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.”
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
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 of…ten 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
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
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.