New Entry from Jody’s Spectrum Scene Blog:

Catching up and sharing from the files of my ramblings. This particular set is from November 30, 2015.

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Our oldest daughter asked me the other day, “What kind of autism does Ben have?”

It was a fair enough question as she knows other kids with specific diagnoses such as Asperger’s Syndrome and PDD-NOS, but these labels aren’t something we’ve necessarily talked all that much about when it comes to her brother.

This could be for a variety of reasons:
a) He’s a person, not a diagnosis.
b) There are so many variances even within the different types of autism that no two kids are alike.
c) Specific types aren’t always diagnosed as young as Ben was when we initially took him to Easter Seals.

But, if I’m honest with myself, it’s probably as much
d) we don’t know
as anything.

Initially, this was a little frustrating at best, but the more I’ve thought about it, I’ve begun to wonder if it really matters what kind of autism it is? Beyond knowing how to best help him learn to help himself, do the labels really matter? Yes, they can help us better understand him and how he deals with things, even help point us in the right direction in terms of research, therapy, and assistance, but they don’t change the important stuff.

The bottom line is that he is a person first. Sure, he has a few little quirks that set him apart from his peers, but in all honesty, don’t we all?

Ben’s official diagnosis was simply “autism” along with a side of expressive/receptive language disorder and a slight motor delay. All that really tells us is that yes, he does in fact have autism, communication is going to be a challenge area for him, and he may have a slightly different gate when walking and running than others.

I find myself returning to one of the most poignant pieces of wisdom a dear friend shared with me the day before our diagnostic clinic: Ben will be the same boy coming home from the clinic that he was going into Easter Seals. He will still be your son. You will still love him to the ends of the earth. No label can change that. Diagnosis can help you know which direction to turn, but it will not change anything about who he is or the fact that he is still your son and you are still his parents.

We still laugh and cry. He still wins my heart over every single time he looks me in the eye. We still hug and kiss and love, all the same as before our D-day. Yes, labels can help us know where to head for understanding and assistance, but they don’t define him or us.

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New Entry from Jody’s Spectrum Scene Blog:

Catching up and sharing from the files of my ramblings. This particular set is from October 26, 2015.

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Normal is just a setting on a washing machine.

I’ve read it and heard it a million times over since our son’s autism diagnosis, but when I read that, I often think the truth is, all special needs parents really want is a chance at normalcy. Sometimes I wonder if that isn’t what all parents want: normalcy. I wonder this because I look around and I see people fighting battles of all kinds.

No one is immune to the pressures of this life. Some battle autism, some battle cancer. Others I know press on despite the challenges of dyslexia, ADD and ADHD. Some families live with epilepsy hanging over their heads, and others wonder when the next bout of chest pains will come for their athlete.

Some families wonder where the next job move will take them and how their kids will adjust to the move. Others wonder if they’ll even have a job next month or next week, and if not, how will they provide for their family?

Other families are looking at their growing children and wondering where they will attend college and how, as parents, they will pay the tuition; or if their students will join the military and if so, where will they serve?

We all have challenges of some sort. And I think we all hold on to the glimpses of normal we see in our family life. Perhaps it is those glimpses which get us through the next challenge and the next and the next…knowing that somewhere down in the depths of who we are as a family, there is some sense of normalcy and what that means for our family. Perhaps “normal” is different for each of us.

Perhaps it’s a dad and a son going out to do morning chores together, perhaps it’s that same dad and another son singing happily as they head to the truck to make a Sunday afternoon run to the grocery store. Perhaps it’s a mom and her oldest huddled around old photo albums looking for just the right baby picture to submit for senior honors, or the same mom and her youngest snuggled up as the littlest reads a story for the one who rocks her world.

It’s in these moments of what may seem all too normal to the outside observer, that I realize we are given moments of extraordinary to get us through until the next normal. I hope that I don’t spend all of my moments wishing for the normal, when I could be experiencing the extraordinary.

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New Entry from Jody’s Spectrum Scene Blog:

Catching up and sharing from the files of my ramblings. This particular set is from September 21, 2015.

NECESSARIES vs. IMPORTANTS

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New Entry from Jody’s Spectrum Scene Blog:

Catching up and sharing from the files of my ramblings. This particular set is from September 14, 2015.

A COUNTRY BAPTISM

Sunday is typically family day for us. We do all we can to keep that as a constant, but as our children grow and are more active in their schools and communities, it becomes more difficult. We’re also finding that as the children grow and mature, they develop close friendships and make plans to spend time with those they don’t see in school (ie: church friends) on the weekends. We’ve begun to joke in our home that we share custody of our oldest son with another family from our church as the two boys are often together over the weekends since they attend different schools.

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New Entry from Jody’s Spectrum Scene Blog:

Catching up and sharing from the files of my ramblings. This particular set is from September 3, 2015

I’ve mentioned before how amazing our community is about rallying around its youth. This is never so apparent as it is during the Avon Fat Steer Show. Young exhibitors work all summer long to ready their animals for show – washing; rinsing; leading; guiding; studying their feed and growth rate, making adjustments when necessary; raising their stock for eventual show and sale.

It is so refreshing to see our community take an interest in the young people who work so hard. Watching these kids in the show ring is nothing short of amazing. Truth be told, any one of those animals could very easily walk right out of the ring, kid in tow, leaving behind anyone who tried to stop them along the way. But for the most part, they do not. The endless hours spent in preparation are evident in the way that animal and owner work together. On the occasion that an animal acts up, or gets away from an exhibitor, they are never on their own. Everyone around the ring stands on the ready to assist.

Outside the show ring, friends and neighbors gather to catch up, not on markets and weather, but on life. This is where I see the epitome of community. Countless smiles and rumbles of laughter greeted me each and every time I visited the fairgrounds with our kids. Most often, I was flanked by both of our youngest, now aged 6 and 7.

Thanks to this amazing community, these kids don’t know a stranger at the fair. Even when all the sights and sounds and long hours at the fair have taken their toll on Ben, and there is simply too much stimulation for him to handle, not once did I get a disapproving glance. Those moments we took solace in our quiet spot, a chair with our cattle – those were the moments we retreated, the moments Ben needed to curl up and regroup in the safety of mom’s arms and lap.

While my son wrapped himself in a ball tighter than seems humanly possible and buried his face into arm as I gently squeezed the anxiety away, friends and neighbors greeted me with sympathetic eyes and a knowing smile – not an “I know what you’re going through” but an “I can see this is a time Ben needs you so I won’t speak, but just know that I’m here” kind of smile. I can’t explain the words which aren’t spoken other than to tell you these are the moments that refuel me. These are the times I am reminded that while Ben is our son, he is very much your boy and we are so completely in this together. And I cannot thank you enough.

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New Entry from Jody’s Spectrum Scene Blog:

Life has taken some unexpected turns over the last couple of years. HA! I have to laugh – isn’t that the understatement of the year? And I have to think it’s not just true for me and my family, it’s just life in general. Sometimes, things we enjoy and think we will never give up simply have to be put on the back burner because there are other things which need our attention. “Important” and “urgent” can come to define, even dictate what gets our attention, and sadly, this blog is often one of the first to go.

While I continue to write, those thoughts don’t always make it here. I want to say, “I’m sorry, ” but I really can’t do that in good conscience because it is a choice that I make based on where my family needs me most. Here, thespectrumscene, hasn’t been the answer to that of late and I’m okay with that because while I haven’t been “here,” I’ve been “there.” There is where my family has needed me. There has covered many miles, included countless bleacher seats cheering on our middle set, involved more sets of clues and puzzles than the mind can imagine while playing with our littles, and even some deep discussions while walking the path with our oldest. I wouldn’t trade these moments for life itself. This is who I am, who God made me to be, and I am thankful that while I am “there,” thespectrumscene remains “here” as my outlet for sharing my thoughts and our experiences not just as a spectrum mom, but as a mom; not just as a spectrum family, but rather as a family.

I can’t promise that entries will be regular forever, but I can promise that while I’m there, I’m thinking of here, and when the day allows, I’ll visit to share the joys and struggles, the ups and downs, and all that makes our family us. I hope that our experiences will encourage other spectrum families and remind everyone that regardless of the challenges, there are perfect moments in every day, even the ones we really have to search for them.

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New Entry from Jody’s Spectrum Scene Blog:

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New Entry from Jody’s Spectrum Scene Blog:

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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

*****

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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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.

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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