All posts by Chris

We Are Never Alone

New Entry from Jody’s Spectrum Scene Blog:

Dear God,

Thank you for going to school, going to church, playing at home.  I love you.

Amen

*****

THANK YOU

This is the prayer of a little boy on 9/11/2016, a little boy we once were told may never be able to communicate effectively.

Fifteen years ago, I stood in disbelief as the events of 9/11 unfolded before us, pregnant with our twins and suddenly questioning everything I thought I knew about life and how we would live it. My hopes and dreams for the world our son and his unborn siblings would grow up in were being tested.

I shook my head, not able to comprehend the way our world had just changed and held my son tight as often and as long as he would let me.

Our leadership stepped up. President Bush reassured us, “I can hear you, the rest of the world can hear you, and the people who knocked these buildings down will hear all of us soon.”

America united and over time, peace in our hearts was restored.

Four years ago, I also stood in disbelief as doctors, therapists, and other professionals, told us our son may never be able to communicate with us, may never understand what we tell him or be able to express himself effectively, may never be able to build friendships or relationships of any sort. He may lash out at us. He may run away from us. He may never this or never that…my hopes and dreams for one of my sons were again being tested.

Once again, I shook my head, not able to comprehend the way our world was changing and once again, I held my son tight.

Diagnosis day is different for every family, and in fact, different for each person in that family as we all feel and process differently. For us, it was confirmation of something we already knew in our hearts. Yet, hearing the words still pack quite the punch.  For me, it was the beginning of a battle in a war we’d already begun.

A month later, another initiative in this battle to hold onto our son and help him move forward commenced with Easter Seals’ Intensive Therapeutic Autism Program (ITAP).

ITAP’s director and her staff quickly became trusted confidants as we began traveling to Peoria for Ben to participate in their three hour program twice a week. Ms. Wiebler assured us that she could hear us, she could hear Ben, and after only a few days into the program, she already knew that everyone would hear him very soon. We united and over time, peace in our hearts was restored.

Life may never be what we once expected, but the peace the prayers of this little boy on the anniversary of an event so breathtakingly terrible brings to my heart reassures me that I am heard; my faith in our creator reassures me that he is heard; and the moments we slow down, allowing ourselves to both hold and be held reassures me that we will never face any battle alone.

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Success Masqueraded as Failure

New Entry from Jody’s Spectrum Scene Blog:

Nearly three years ago, I wrote about how our spectrum son looked me square in the eye backstage at play practice, put his hands on my cheeks, and asked, “Mommy, can we please just go home?” http://ift.tt/2b5qltO

I wrote about how defeated I felt by autism that it was stealing the joy our boy had flourished in on stage as a soldier boy just a year previous. I wrote about how disappointed I was to be giving up, to let autism win, to walk away from something I knew our boy had so completely enjoyed before.

In rereading that piece tonight, I realize now that hindsight really is 20/20, or at least a little closer to anything we can see in the heat of the moment. Reliving the emotion of walking out of rehearsal knowing that was the end of Ben’s show season, I failed to recognized something even more monumental in the life of an autistic child than performing on stage – I failed to recognize that he was his own advocate. He didn’t need me to speak for him, interpret for him, or seek help for him. All he needed me to do was to LISTEN to him. He needed me to listen and honor his request, and once I did, I had my boy back. My smiling, happy, laughing, joy-filled boy had returned to me.

I relive the moments of despair from that season three years ago every time I go backstage at the Opera House our other kids have come to know as another home. Tonight was no exception as tonight was audition night for the younger set (read: Ben & Ali).

Ali is very much like our bigs, ready to jump on stage and perform at a moment’s notice in any way, shape or form her director requests. She is clearly one of the happiest kids around when her feet hit that black platform. Ben is more of a depends on the day kind of kid. He absolutely LOVES to watch his siblings perform and he typically wants to have his moment in the spotlight as well after all is said and done, but it really just depends on the day as to whether he actually wants to be “in” a show. Fortunately, I have come to realize this is perfectly acceptable, even applause-worthy considering his placement on the autism spectrum, particularly if he is in fact able to articulate his desires as to whether or not he will participate.

And so it was, time to head to our beloved Opera House for Oliver Twist auditions. Kids were given a script and encouraged to read part of a scene and then sing Twinkle Twinkle Little Star. Our director, Ms. M., gave me a script and suggested a few different parts for Ali to read. When I asked Ben if he’d like to read, too, he hopped right up and joined in. They took to the stage and read the scene with two older girls, smiled and giggled as they returned the books to Ms. M.

She then suggested they sing a song together. Ben took Ali by the hand, stepped forward and belted out the most flat rendition of Twinkle Twinkle Little Star you’ve ever heard. I have no idea what it was that made him decide he was going to sing off-key, but I had asked him to sing loud, and loud he did. It took all I had not to belly laugh as I watched his eyes dance. Ali, bless her heart, just sang along, best she could, hand in hand with her best friend, BenBen.

8-18-16 Oliver Twist Auditions1
8-18-16 Oliver Twist Auditions2

I have no expectation of lead roles for these two or even lines for Ben as I realize his struggles can be exemplified on stage and that can start a downward spiral for the other kids, but I am so thankful that he wanted to participate, albeit on his terms. (Yes, I can still hear him in my mind and I am still smiling.)

And just as important, I am ever so thankful for a place like the Ellisville Opera House where everyone knows your name, everyone gets a chance, and everyone is loved. I can’t think of a greater gift to give our young people. If you’d like to contribute to that atmosphere, mark your calendar for September 30 – October 2 to attend a performance of Oliver Twist I’m sure won’t soon be forgotten.

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Our Kind of Autism

New Entry from Jody’s Spectrum Scene Blog:

There’s an article making the rounds entitled, “My Child Has The Kind of Autism Nobody Talks About.” It’s not an easy read. In fact, it really pushes the emotions of this spectrum mom, not because it’s wrong, but because there are some aspects of it with which I can definitely relate.

Autism isn’t an easy road. There are many challenges, many struggles, many difficulties. But it is these trying times which make the milestones, the victories all the sweeter.

I tend to not write so much about the difficult times, but rather focus on the successes, the overcoming, the persevering. I do this because it is my intention that our spectrum boy will someday be able to read through all these entries and get a glimpse of his childhood through our eyes. I don’t want him to ever feel like he was a burden; like he was a challenge; like he was someone or something to be persevered through and overcome. Autism is a part of him. It cannot be separated out from him. It does not define him, but it is very much a part of him.

I could write volumes on the frustrations, the hours upon hours of therapy and work devoted to helping him, not to mention the gallons of tears cried in frustration; but these aren’t the stories on which I want dwell. Yes, these are an important part of our journey and help us to work through the times we get a message saying something along the lines of “just wanted to alert you to some issues this morning…”

Yes, there are issues and for some they are many, frequent, daily, perhaps even hourly, but I also don’t think it’s fair to stereotype all autistic kids into a group which is identified as being nonverbal kids with behavioral issues, Yes, that is the reality for some, but not all. Not Ben. While communication is something we will continue to work on for years to come, he is very verbal, so much in fact that we spend a fair amount of time asking him to quiet down a bit. It’s a wonderful problem to have indeed!

Bottom line, these kids are kids and every single one of them is loved for exactly who they are. And this, I have to believe, is exactly how it was intended to be.

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Don’t be Duped by Lists

A quick scan through social media can lead you through any number of lists: to-do lists, don’t-do lists, top 10 lists of this that and the other.
I happened upon one this evening from TheAutismSite.com blog which touts the Top 9 Signs that Your Toddler May Have Autism.

1. Lack of Smiling
2. Rare Imitation of Social Cues
3. Delay in Babbling & Cooing
4. Unresponsiveness to Name
5. Poor Eye Contact
6. Infrequently Seeking Attention
7. Lack of Gesturing
8. Repetitive Behaviors
9. Delayed Motor Development

OLYMPUS DIGITAL CAMERA

As you can see, Ben just didn’t fit every marker on the list.

As I read through this list, I found myself shaking my head. You see, our spectrum son wouldn’t have fit into more than one of these categories his first two years of life. He was very much a “normal” kid, there were just some things that were different as compared to his older siblings, not wrong, but different. Because of my husband’s involvement in education as a career, he knew long before I did what we were looking at, but even I knew something was different. Because our son was meeting typical milestones, our doctor suggested a “wait and see” approach to answering the oddities that were quickly making our son “him”; again, nothing wrong, just different.

It finally took a long talk with a trusted cousin whose son had recently been diagnosed with Asperger’s Syndrome before I could wrap my mind around the possibility that what I considered as a “maybe” could very well be a “reality” and even at that point, I had to call our pediatrician to ask for a referral to Easter Seals so that we could begin the diagnostics process not because we wanted him to be autistic, but because we knew we had to find answers for our son.

It would be another 18 months before we would have the diagnosis and even begin to know who and what to ask in order to better help our son, but I shudder to think if we had given up based on a list such as this simply because, well, he didn’t fit the mold of that list. My point here is that as parents, we know our children, and quite often, we know when we need to move on in seeking help for our children. I think back and realize how easily we could have written off the oddities that just made Ben his own little person, but we knew there was more to it than a different personality. Because we followed our gut instincts, we were able to get him the help he needed so that he could enjoy things like an afternoon at the park or the beach and time spent with peers. These still are not easy things for him to tackle, but because of the efforts of countless people along the way, they are at least a possibility. And the smiles that come with the requests to go back to the beach are simply priceless.

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It’s Hard

“Autism is hard – kicked in the gut hard.” This thought hit me Sunday as I’d been through dozens of sets of clues with our spectrum son in just a few short hours that seemed to stretch into days. Autism is hard.

It’s tears and fears; worry and frustration; heartbreakimg and heart-sinking. And that’s just for me, I can’t even begin to imagine the struggles he faces and works through every single day.

It’s also full of sighs and smiles; love and hugs and kisses and sometimes even snuggles, but never for very long; it’s belly laughter so big you need to catch your breath and dry your eyes; it’s pride in him, and joy bigger than life itself as he smiles and laughs and runs at us with all his might.

A few moments of quiet allowed for reflection and took me back to those many, many clues and all the emotions that came in those hours with our boy. Further reflection took me to his four siblings and I realized that autism isn’t so hard. It’s not our life, it’s only part of our story. Parenting – parenting is hard.

Seasoned parents warn young moms to “Enjoy these moments!” because they will be gone all too soon. “Carpe Diem!” “Seize the Day!” “Don’t wish these moments away!”

Confession time: I LOVE being wife to Chris and mom to Rob, Tom, Jac, Ben & Ali. LOVE LOVE LOVE LOVE LOVE it! There’s no question this is at least part of what God made me to do. I truly love it. But, I do not love every single moment. I do not love the frustration and the heartbreak, the tears and fears, the struggles and the growing pains, but I am thankful in all of them – thankful that I am able to live these days with these people.

Parenting is hard, but I sure wouldn’t trade it.

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Yes, It’s Been a LONGGGGGG Time

It’s been a terribly long time since we’ve spent any time here at all updating what is going on. Unfortunately it mirrors out life pretty closely in that these days we are often busy and don’t get much done other than what NEEDS to be done. We have made some technology changes that hopefully will eliminate some of those challenges and make updates easier. Here is to trying to do better!

No, we haven’t dropped off the face of the earth!

Wow! I guess we are a little behind in getting a post on what’s going on in the Janssen household these days.  We need to try and be a little more diligent.  I’ll ATTEMPT to hit the highlights since our last post, and hopefully we can fill in the holes of what I miss.

I think the big news of the year is in the spring Ben did get an official diagnosis of Autism.  He is on the spectrum although many of the professionals agree he is on the higher functioning end.  That being said it is still amazing the small little victories we enjoy.  Small things like Ben telling us he had a tummy ache last night and then confirming that by getting sick an hour later after we got home.  I strongly believe that this whole experience will teach us to always notice and celebrate the little things.  With this diagnosis, he has started therapy twice a week in Peoria at Easter Seals.  This has been quite a change in our schedule as Peoria is over an hour away and he goes for 3 hours a day 2 days a week.  It has been an adjustment, especially with summer ball schedules mixed in, but we do believe we are seeing good progress with the process.

Speaking of summer ball, the “big 3” have been busily enjoying summer ball this summer.  All three teams started the season strong with multiple wins and it has been an exciting summer.  Robert is finishing up his last summer of summer ball and has decided to go out with a bang.  He has had the best season he has had in quite some time.  He is fielding much better and is hitting the ball well.  He has made some new friends in having guys from Abingdon and Bushnell on their team this summer and he has really enjoyed it.  Thomas’s team has had a good summer as well.  They’ve won some and lost some, but in his usual manner, Tom has continued to ALWAYS be upbeat and hustling!  Jac had a different experience this summer in that she and a classmate were the only two on a team from Bushnell.  There were more from her class involved in summer ball, but they combined girls from Avon and Bushnell and then split them on two teams.  She found a strong love of catching, and of course Dad will try and foster that love.  With a little coaching she has started to really come around as an up and coming catcher.  Ben and Ali spent a lot of time at the ball fields this summer and have their favorite playgrounds, but also due to the extreme heat this summer have spent some evenings at home either with one of the big 3 or Mom or Dad.

Robert managed to have a few other experiences this summer in that he was involved in the Senior Rascals performance of Dear Edwina.  He’s moved into the Senior group now.  He tried telling us he had a very small part with only a few lines.  He’s old enough that we would drop him off for practices and didn’t see the play until performance, and found out he was not completely honest.  He didn’t have an overabundance of lines, but certainly had times when he stole the show with his lines but especially his non-verbal communication.  Great performance.  Rob spent a week with his Grandfather at Lincoln’s New Salem park near Springfield where he attended a day camp essentially training him to be an “interpreter” at the site teaching people about the site and the history. He really enjoyed it and the staff was very complimentary and was really advocating for him to return!  This was also the summer of work for Robert in that he got his first taste of real employment.  Rob decided he wanted to sign up for detasseling this summer and it’s meant some early mornings with hot working conditions, but he has enjoyed the paychecks.

Thomas and Jaclyn have also stepped up and been helping out bunches at home with the busy schedules.  Thomas enjoyed a week of Bible camp last week at Faith Bible Camp, and this week both he and Jaclyn are spending their time at Lincoln’s New Salem park.  We are so looking forward to the reports of their experiences this week.  Ben continues to make progress and work on things both at Easter Seals and at home.  In the fall he will be attending Pre-school at least part days to try and make that transition as well.  Ali continues to keep us all smiling with her love and care for all of her siblings, but with a special bond with Ben.  We can see already that she, Rob, Tom and Jac will all play a critical role in Ben’s future and they are all so caring and helpful in that regard.

Jody continues her work as Church Secretary and the challenges that it brings.  Chris continues his work as Junior/Senior High Principal at Spoon River Valley and the challenges that the job and the schedule bring.  We are all so thankful for the opportunities and blessings that God has provided.  Jody has been struggling with a hip injury sustained from a fall on the ice last winter.  Jody and Chris are both scheduled to run in the Macomb to Peoria run on July 21st to benefit St. Jude Children’s Research Hospital.  Jody’s training has been disrupted by the injury and her running will probably be adjusted on Saturday, but so far the recovery is going well.

We have such busy schedules that we don’t often take the time to personally get in touch with our friends and family that mean so much to us, however, we are so blessed for each and every one of you.  A short electronic note either here or on Facebook always means so much!

 

Perhaps…

As I peruse through the “most recents” here on Facebook, I often relate to the musings of my friends as they share snipits of their days.  Lots of smiles & some laughter, too; feeling like in some small way we’ve reconnected or stayed in touch.  It’s amazing as we get older & the miles multiply between our homes just how much those few seconds can boost my spirits.  And then there are times, that I realize what a varied group we are and sometimes, we just see things differently.  I’ve decided this is pretty much just due to life circumstances as many of the comments that get to me most are very similar to what I may have thougth as recent as a few years ago.  Tonight’s gander through status updates has lead me to to some reflecting.  Or perhaps it’s because we’ve enjoyed an amazing couple of days with so many from our community, relishing the simple things, soaking up the moments focusing on our kids.  Perhaps it’s a little of both.

Our son has autism.  He seems to be fairly highly functional, but there are still struggles.  In a week of hustle & bustle like this one, I usually just hope to survive without a major meltdown for Ben (or me) but sometimes, that is even too much to hope for.  So far, this week has not been one of those weeks.

Wednesday night was Scrambles Night.  The kids are divided by gender & age & get to chase & attempt to catch chickens or pigs depending on their ages.  I got to watch my three middle children participate; two of them with HUGE grins.  One even won their heat.  The third did not so much enjoy it, but he tolerated it.  That’s our Ben.  He found comfort being by mom & not touching the chicken.  Two days earlier, we couldn’t even get him to go near our chicken pen, much less go IN it, so just getting him inside the gate was a major milestone.  I’m the photographer for the scrambles, so I didn’t get any pictures of Ben & the chickens, not that he got close enough for that anyway, but it really warmed my heart when one of the organizers reached for my camera & said, “Here, let me do that.” and took a picture of me & my boy.  He didn’t have to do that, but he did.  I don’t have a lot of pictures of me & my kids because I’m usually the one taking them.  And it wasn’t a great picture because Ben wasn’t looking at the camera, but that’s Ben.  Eye contact is hard for him; especially with a stranger, in a pen with chickens, and a lot of people and loud noises.  Noise is also hard for Ben.  But it’s a picture of me & my boy & I love it.  Thank you, Frank.  I’m sure you didn’t think twice about it, but you have no idea what that picture means to me. 

Thursday night was the Pedal Tractor Rodeo.  Again, kids are divided by gender & age to maneuver through a course of cones on a pedal tractor.  Sounds simple & fun, right?  For most kids, yes.  For Ben, fun to sit on the tractor, but not so simple to coordinate the legs to work the feet to move the pedal, not to mention the eye/hand coordination of steering.  And oh yea, the speakers – more loud noise.  It helped it was his dad’s voice, but it was still quite loud for his little hypersensitive ears.  He was the last one in his heat & honestly, I never thought he’d do it.  But he climbed on & sat there.  And sat there.  And sat there.  Instead of his turn being up, the helper really helped – as in pushed him through the course; the entire course.  They were about 1/2 done when I noticed the deafening silence as the stands had grown quiet.  My mommy heart began to pound & my mind raced wondering “What are they thinking?”  I know it doesn’t matter, or rather shouldn’t matter what others think, but let’s face it, as moms, we want our children to be accepted.  And that’s when I heard it.  One small voice.  (Remember the loud noises thing?)  One voice I recognized from way at the other end of the bleachers saying, “Goooooooooo Beeeeeeeeeennnnnnn!”  And the helper kept helping all the way to the finish line.  And everyone clapped & said “Yay Ben”.  It was a pedal tractor rodeo and his time put him dead last, but for a moment, I think I almost knew what the parent of an Olympic gold medalist feels like.  Not because my son won the gold, but because this amazing community we live in treated him like he had.  And why?  Because he got on the tractor & held on while someone pushed.  Thank you, Jay for being my son’s horsepower.  And thank you, dear friends, for encouraging my son through your cheers & clapping. 

Friday afternoon was the annual Afternoon of Fun for Kids.  It really is a remarkable day for the kids – no high tech video games, just a bunch of kids running races.  Boring?  NO WAY!  Our kids look forward to it all year long & this year, Ben was old enough to participate!  But would he?  I thought not.  Once again, this little guy surprised me!  And the compassion of the leaders made me so thankful to be living here in this snapshot of America.  I made a mistake & took him down a heat early for one of the races so we stood off to the side to wait our turn.  The leader gave us a gunny sack so Ben could “get used to the feel of it.”  I hadn’t even thought of it, but what a great idea.  He wasn’t all that sure of it at first but b/c he had that extra few minutes, he was all about the jumping in a sack.  Mind you, he didn’t get but a few feet from the starting line, but he was there & he was participating just like all the other 3 year olds.  And that did my heart good.  Thank you, Shelly, for thinking of my boy, when even I was not.

And Friday night, while gone with our oldest on a quick trip to convenient care (an entirely different story) I received a picture via my phone.  Can you imagine my surprise when I saw it was Ben on a stick horse prepping for the stick horse race during the horse show?  Add to this scenario that Chris was ther with our four younger children, without me.  He is an amazing dad, but Ben is sometimes a handfull.  Thank you, Chris, for never backing down & never saying anything even remotely close to “deal with him” or “he’s yours” or anything else that would indicate I was on my own with whatever situation we faced.  You are my rock.  I am so blessed to walk this journey with you.  And thank you, Shelly for helping Chris while I wasn’t there.

All the while through these milestone moments for our Ben, his siblings (ages 13, 9, 9 & 2) were all cheering him along; encouraging him as only a sibling can.  And again, my mommy heart melts.

It’s moments like these that I am so thankful that God has put us here and blessed us with these amazing children.  Ben has good days and he has not so good days.  Our 13 year old said to me tonight, “You know, Mom.  Everyone has a bad day sometimes.”  He is so right.  Why should a bad day for Ben feel like such a letdown & failure to me as a mom (Where have I gone wrong?  Why can’t I do more for him / be better for him?  Aren’t I supposed to be his best advocate?  How can I do that when we can’t get through the day without major issues?)  Why do I obsess over these “bad days” when we all have our days?   Thank you, Rob, for your ever-so-enlightening observation.  Kinda makes up for that trip to convenient care. 😉

So here’s what I’m thinking tonight,  when you’re out & about & you get frustrated b/c someone else’s child is screaming, please try to remember: not every screaming child is a brat or needs to be “disciplined” & not every parent who calmly sits by while said child screams is a slacker.  Perhaps the child has special needs.  Perhaps one or both of them has had a really tough day & this dinner out, allbeit at McDonald’s, is the one bright spot & that spot just got a little dimmer.  Perhaps this is the only few moments they’ll have together all day & it’s still not going well.  Perhaps we could all benefit from a deep breath & a friendly smile…

Another St. Jude Run in the books!

Last Saturday we finished up another St. Jude Run. This year Jo joined in on the fun and great fun was had by all. We had a smaller team this year of only 11 from Avon joining the group from Macomb in our relay style run from Macomb to Peoria. However, we managed to raise $9000 for St. Jude in the process. Our friends and family were amazingly supportive in their efforts to sponsor us and support us with encouragement and prayers. It was an amazing experience to again spend the day with great people pushing ourselves and raising money for a great cause. I just can’t help but think about all the support St. Jude gives to children with cancer and their families. We made the trip with Jo running about 7 miles and me going about 9. She has now been nursing a bum ankle, but it is getting better. We finsihed the day off with a wonderful dinner and a presentation of a check to the St. Jude’s telethon for $95,000. It was a fabulou experience and we are already making plans for next year. This event marks the beginning of the end of summer. Next week we kick into Fat Steer Show and then the summer will officially be over.