The Diagnosis 2

In my last post, I wrote that I at first didn’t want a label for my son…until I needed it.

A big part of me didn’t want a “label” for him…but then I wondered if it would be easier and help me explain his behavior to others…and myself if he did have one.

I decided we needed to know “the answer”.

One big question I’d like answered is: Is he “normal” or is there really something physically/neurologically different about him? If I could peer into his mind, would there be some sort of sticker in there somewhere, a label marked “Normal with a grumpy disposition?” or “Aspergers” or “ADHD” or “IHNO” – I Have No Clue.

The family therapy was a great start for us – and again, it was the best first step we made. For me, it was the beginning of an acceptance of who my son is…and the acceptance that I did need outside help to learn how to help regulate my son’s moods and anger issues.

While Family Therapy did help in many ways, we reached a point where we felt like we were spinning in circles or at least beating around a big giant bush that was obstructing a clear path forward.

Through prayer and many conversations with very good, wise, and patient friends, we decided it was time to get a fuller perspective and understanding of what exactly makes life so hard for our son. At that point, our family counselor had mostly said he didn’t think it was autism/aspergers so I decided maybe we should look into ADHD as a possibility.

Long story shorter, we got him set up with a new psychologist  – thanks in GREAT part to a good friend’s referral. We specifically asked him to do a comprehensive and thorough evaluation so as to leave little doubt about the answer. (We were tired of all the uncertainties and back and forths.)

Thankfully, we had really found the right doctor this time, he is incredibly thorough and took as many extra steps as needed to get to the right evaluation.  My husband and I and our son spent an initial visit together and then our son spent two afternoons with him doing the ADHD survey evaluation.

The last day, after all the testing finished, the Dr. came out looking a little perplexed.

“Well, I really don’t think he has ADHD,” he said very certainly but then hesitated before adding, “….and I don’t think it’s autism….”

But he kind of trailed off at that point and said he wanted to spend more time looking over the results and talking with his colleagues about it.

“I’m not certain yet what it is, but I want to figure him out.”

To which I quickly responded,

“You and me both!”

Though I didn’t get the final answer I was hoping for that day, it was reassuring in a way to know even the professional felt perplexed by my son!

After about a week, the doctor called and asked my husband and I to come visit with him and we spent a little over an hour going through a verbal questionnaire (different from the written one we’d already handed in). This gave us the opportunity to delve into our answers more and give practical real-life examples of our son’s behaviors and struggles.

After going through that questionnaire together, he said he believed we could put autism back on the table. He explained a little about how the world of autism was undergoing many changes in how autism is diagnosed and how the understanding of autism was expanding beyond the stereotypical traits most people associate with autism. Asperger’s Syndrome, as it had been called for decades, was now included in the general “autism spectrum” instead of a stand alone condition. In light of the new diagnosing protocols (DSM-5), he really felt our son could indeed “fit” into the autism diagnosis after all.

He handed us the evaluation results with his official diagnosis:

High-Functioning Autism.

Some parents may feel crushed to hear those words about their child and see them typed out so officially in big black ink.

Honestly, I only felt like crying because we had finally reached it.

The Answer. 

The verification of what I’d suspected about him since he was about 4/5 and now he was almost 10. That’s a whole lotta years of not knowing what’s going on with your child and not knowing how to help him or respond to him and now knowing why?! Why, Why?! Why is he like this?!

Am I happy he “has autism”. I wouldn’t say it like that. What I do say is –

I love my son.

After that day, I felt incredibly relieved and satisfied knowing there is something that explains his behavior.  I didn’t know exactly what it all meant or where we’d go from there. As a friend put it to me –

At least now I knew what road we are on. 

(See all posts about our son and autism here)


Sunflower Day 

Here’s some sunshine (or at least sunflowers) for your dose of simple beauty for the day.

Photo credit goes to my awesome husband!

Sunflower Sunset

Sunflower Sunset

Sunflower Sunset

Sunflower Sunset Panorama

Our seven-year- old planted skyscraper sunflowers and this one finally bloomed!

He diligently watered and checked them every day.  He’s so proud of his sunflower! 

 EnJOY your day!


I Didn’t Want a Label…until I Needed It. 1

pig ear with label

When our son’s therapist changed his initial suspicions from Asperger’s to “just anxiety” I felt relieved…at first. I understood Anxiety and felt like it was something we could deal with, fix it, and get on living a happy family life together. I told our therapist we weren’t looking for a label yet, we wanted to focus on how to help him with his behavior first.

In our counseling sessions that year (his second grade year), we focused on developing “emotional management” skills for him and us, as his parents. Our therapist illustrated a “window” as a sort of analogy of how we all handle emotions.

When we are calm and collected, we are inside of our window. But when the emotional intensity starts rising, the window slowly opens and eventually it can get to the point that the window opens completely and our emotions are now “outside of the window”. At that point, the logical, thinking part of the brain turns off and the smaller, fight-or-flight part turns on. (I felt like he was talking as much about me as out son.)

Our first goal was to keep him “inside the window”, especially when his emotional intensity started escalating and the window crept open. We also worked on techniques to get him – and me – back inside the window when the poop hit the fan and all hell broke loose. After a few sessions, he developed a slightly better handle on understanding what his emotions are but still needed work on knowing what to do with his emotions and how to properly react with them without hurting others or himself.

For a while, all our new tricks “worked” until one day they just didn’t anymore.

When things went his way, he was great. In fact, I should really stop here and state that when he wasn’t “outside his window” he acted so kind and sweet and funny.  I’m only focusing on the hard side of life during those days but it wasn’t all terrible.

The horrendously awful bad times eclipsed those good moments so much it was hard to see the good through the dense fog. When he felt bored or had to do any type of work which carried no benefit or interest for him, a switch flipped and so did he. He became like a scared bird in a cage, flapping around everywhere not sure what to do or how to handle it all. I felt like flying away too.

Dear God, make me a bird. So I could fly far. Far,  far away from here. (I feel you, Jenny!)

I walked on egg shells with him just hoping to God that no one said or did anything that might flip his switch the wrong way. It was like having an 8-year-old toddler – but bigger and smarter.

As hard as this all was, I still kept so much in. I hated the bad moments but struggled to accurately describe why things were so hard without sounding like a big huge whiner. I wanted help but I didn’t want others to know this side of him. Even though I wished I wasn’t alone, I still wanted to preserve other’s view of him as a kind and sweet boy. Since he always showed his quieter side in public, I felt embarrassed, I guess, or afraid others wouldn’t believe me.

I didn’t get him. It pained me to not understand my own child.

Again, my mind reverted to the doubts and questions from the previous year. Again, I felt like there was something more than “just anxiety” going on here.  I don’t know if I was naïve or stubborn (or both) but I lived in a fuzzy back-and-forth of wanting him to “have something” and wanting him to “grow out of it” already. A big part of me didn’t want a “label” for him – I’m kind of anti-labels – but then I wondered if it would be easier and help me explain his behavior to others…and myself if he did have one.

I wished I could peer into his mind, and look for a label in there somewhere marked “Normal with a grumpy disposition?” or “Aspergers” or “ADHD” or “IHNO” – I Have No Clue.

Finally, I decided I wanted – needed – to know: Is he just “quirky” or is there a real “problem, and does this problem have a name – more importantly – does it need a name?

“For each difficulty, there is a gradient of severity. We need to separate whether it is a ‘problem’ (i.e. significantly impacts the quality of a child’s life and merits significant intervention) or a ‘quirk’ (i.e. an unusual feature causing less impairment.”  (Kids in the Syndrome Mix)

I still felt so confused and anxious about all this. I realized I was either in denial or crazy. But then I stepped back from the situation and pointed this out to myself (yup, the crazy mom talking to herself)

If these behaviors were merely “quirks”, why has it “impacted the quality of his life and our family’s so drastically?

Another friend prodded me to admit I didn’t worry about the other kids the same way and – though they were no saints – their behaviors didn’t impact our lives enough that we succumbed to outside help.

I was waiting for him to “grow out of it” but, as he started third grade and turned nine, I knew it was time, time to look for better answers, and hopefully better solutions….

{Remember, as I share about our journey with our son and autism, I’ll share where I was, where I am now, and where I hope to be.}

(See all posts about our son and autism here)


Boys will be Boys…or is it More than That?

boy jumping kid-enjoy-sun-set-157878

{As I share about our journey with our son and autism, I’ll share where I was, where I am now, and where I hope to be. Today, I’m starting from the beginning before I knew what I know now.}

I don’t remember anything obviously different about my son’s infancy – he sat up, crawled and walked at all the “right” ages. That said, I remember when he was born, I did have a deep-down feeling there was something…different about him. I couldn’t quite put my finger on it but it was there, whatever it was. If I could go back with the knowledge I have now maybe I would see things I didn’t see before. Or maybe others noticed but didn’t say anything.

When our son was about three we noticed subtle changes in his behavior, a regression of sorts. Where before he was a generally mild-tempered baby, now he became agitated easier and walked around with a semi-permanent scowl.

His little brother, our third child, was born around this time so we figured he was just having a hard time getting used to another little person in the house taking up mama’s and daddy’s attention.

Since he’s our second child, the first boy after a girl, whenever I mentioned how different he seemed compared to his calmer, obedient, imaginative and precocious older sister, the same clichéd responses bounced back to me.

He’s just being a boy.

Or

Boys are so different from girls! 

If I had a dime for every time I’ve heard those words…

He acted impulsively, easily angered, and had the.worst.tantrums! Oh, those tantrums! I’m sure I earned more than a few years off purgatory for those hellish, hellish days.

Though his behavior drained the heck out of me in those early years, I still clung to hoping this was all still within the boundaries of “normal”.  Though I grew up with three brothers, I didn’t feel like I had much to compare to since he was my first son and it seemed like all little boys acted impulsively, lost focus easily and seemed oblivious to other people’s feelings.

Well, boys will be boys, right?

Or will they? Over time, his erratic behaviors intensified at home and I grew more and more confused and frustrated.

He behaved his worst when he was with me and at home. We never had anyone outside of family “complain” about him or bring up any serious concerns. In school, his teachers described him as a sweet and kind boy who was just kind of “shy”, struggled with following directions, and often seemed like he wasn’t paying attention – unless it was about something he was super interested in or excited about. Then it was hard to get him away from that. He had friends, looked people in the eye and, from what I could tell, interacted well socially.

Since he only acted “badly” with me, my next “logical” conclusion was that it was just me. I was the problem.

{If I were talking right now, I’d probably start choking up.}

Was I doing something wrong as a mother? I was told I shouldn’t take things so personally, but when he acted like an “angel” for everyone else all day but then turned into a growly-faced-green-eyed monster as soon as he was with me, it was hard not to feel hurt and confused by that.

Don’t get me wrong, I was so thankful he behaved well at school and with his friends. But I started feeling like it would make things easier if he didn’t so I knew for sure it wasn’t just me.

I know that was so selfish and vain but that’s how I felt. I tried prodding teachers and his friends’ parents to see if they might say anything, but no one really did. Or maybe they were afraid of offending me?

My mind tortured me with a swirl of questions, doubts and fears.

I went ahead and checked out some books from the library on Asperger’s Syndrome and Autism, ADHD, and other “spectrum” conditions. As I read and went through the checklists in these books, I noticed his behaviors lined up with some of the listed characteristics but then not with other more commonly known ones and his behaviors weren’t consistent in every environment.

{Note: Most of the books I read were from the library and written years before our current understanding and terms for Asperger’s and Autism.}

I hated those books! I banned myself from reading blog posts about it to prevent even more confusion and frustration.

I over-analyzed everything he did, hyper-observed him and constantly compared him to other boys his age desperately wondering – is my son normal…or not?

I looked and looked for where he fit but he was his own unique shape with no matching hole. 

If I noticed him doing something like walking around on his tiptoes while flapping his arms around like a bird, I’d freeze in fear – he has autism.

But then, I’d see another friend of his do the same thing and let out a sigh of relief.

Nevermind, he’s just a normal boy. Calm the heck down, brain!

Then, during one of his hours-long meltdowns, I’d sob as I held his door shut so he’d stay in “time out” and completely tear myself apart.

This is all my fault. I should have played with him more or read more books with him, I didn’t give him enough attention after the baby was born…I’m a terrible mother…

Then, I’d read something about autism or ADHD and it would start all over again.

I felt like I had become a crazy paranoid mother looking for an excuse to make me feel like less of a failure who couldn’t handle her own child. I felt isolated, confused, and weary.

Finally, when he was about seven and after the absolute WORST summer ever with him at home, I broke. I could not do it anymore. The day-long tantrums. The hellish meltdowns. The brain-rattling screaming. The disobedience. The constant bothering and not listening. No. more.

I sent a message to our family doctor – whom I had shared my concerns with but hadn’t taken much action yet since he didn’t notice any other major red flags – and he sent us a referral for a family therapist who specialized in behavioral therapy.

I will say right now – going to a family therapist was the scariest, most humiliating, best thing we did.  

Our son was very quiet in the first few sessions and seemed aloof and disengaged. This led the therapist to at first admit he suspected Asperger’s as a possible explanation. {Remember this was pre-DSM-5 when it was still called that.}

Though I didn’t like hearing this, it at least made me feel less alone in my own suspicions. However, after a few more sessions, our son opened up more and the therapist seemed to change his initial insight and suggested our son only had a bad case of anxiety.

The therapist gave us practical ideas (which I’ll share later) we could use at home to help ease his anxieties and handle his meltdowns better. Life improved in some ways but worsened in others.

At first I felt relieved he “only had anxiety”. I forced myself to stop reading anything about Asperger’s, Autism or ADHD because it was making me crazy.  But deep down, I wasn’t satisfied, I knew there was still something else going on…

To be continued or this blog post will turn into a book chapter. 😊

(See all posts about our son and autism here)


The Great American Total Solar Eclipse! {With Pictures} 1

Alrighty, now for number three on my list of 7 Things I Want to Write and Share. (What?I never said I’d go in order.)

Wayyy back in 2012, my husband, his parents, I and our kids stood in wheat field observing a partial solar eclipse.  On our way home, my husband told us we’d get a chance to see a total solar eclipse in about five years.  It seemed so long away at the time and then suddenly five years went by and on August 21st, 2017 we really did!

A few months before the great event, he scouted out a viewing spot in Nebraska close to a place he travels to work sometimes right along the center of the path of totality.  The morning of August 21st we woke up at 5 a.m., packed up his scope and photography tools, some food and water, the kids of course, and headed north.

Since we started early the roads weren’t overwhelmingly crowded. It was only when we stopped to fuel-up that we noticed how unusually busy the small-town gas station was for a Monday morning. Other than that, there weren’t any obvious signs that something spectacular was about to occur.

Well, except for this one –
20170821_074320

However, once we entered into Fairmont, NE, we started seeing more cars parked on the side of the road and small gatherings of people here and there with campers and tents set up.

We pulled off the main highway onto a dirt road and things started feeling a little strange. We passed by a few other people parked on sides of the road, sitting on their lawn chairs sipping beverages. They waved to us as we drove by – as if  it was just another usual day in Fairmont. (Who knows, maybe that is what they do there every day?)

I felt like I was part of something…odd…and potentially exciting. But mostly odd…and slightly like the part in a movie where everything is going along normally right before an alien invasion descends upon the earth.

We arrived to the spot around 9:30 a.m. and, to our dismay, someone else was already there! How could they?! Didn’t they know we had already claimed that patch of dirt lonngggg before they even knew there would be a solar eclipse. I bet they just found out that morning. Sheesh.

Oh well, we drove down a bit further and ended up finding an even better spot by the corn field, so there.

My husband started setting up his equipment and the rest of us made ourselves comfortable. We forbade the use of the word, “boring”, I mean what could be so boring about hanging out by a cornfield on a dirt road in the middle of “nowhere”?

Setup for the Total Eclipse

Thankfully our daughter brought Uno and the boys’ light sabers were in the trunk so that kept them “entertained”.  We also packed food that I threw at them to fend off any whining.

One might wonder, what happens when you’re hanging out in a cornfield for a few hours with kids who inevitably will have to “go to the bathroom”.

I looked up portable toilet ideas on pinterest the night before and came up with this –

20170821_125054

I was pretty proud of this portable toilet idea and thankful we brought it.

Around 11:35 a.m. the moon began its transit over the sun but clouds had come in making us nervous about what the view might be like for totality.

Total Solar Eclipse 2017

It remained cloudy and we prepared ourselves for disappointment.

Then, about 30 minutes before totality, we sighted a blue clearing moving in our direction and remained cautiously hopeful, hoping it would make its way over us just in time.

Ten or so minutes before totality,  the blue patch made its way over us and  the clouds opened up at just the right time!

Total Solar Eclipse 2017

As the moon closed in, the temperature dropped from a muggy 85F with a hot breeze down to what felt like a cool 65F breeze. We looked up into the sky and saw stars and planets and the horizon in every direction looked like a sunrise/sunset.

The picture on the left is 7 minutes prior to totality, and the one on the right is about half way through totality.

Eclipse Darkness

It felt like evening…and morning, but it was one o’clock in the afternoon! By now we were all standing in the middle of the dirt road, looking around at this surreal sight, crying out in excitement and shock at what we were seeing!

I just kept turning and taking it in, my heart pumping faster and I felt excited and slightly terrified…this was so bizarre!

My husband excitedly announced totality and we all took our solar glasses off and looked up and saw this –

20170821_130252

It’s a terrible picture but you can kind of see the black dot in the middle of the sun. It doesn’t look all that impressive in this picture but when I stood there and looked up and saw it, I…I just can’t explain in words the feeling of seeing such a terrific sight. It was unlike anything I’d ever seen before.

I can see how people got so freaked out about this before they understood what an eclipse was – or even that the moon and the sun were objects in outer space and not gods.

For my husband and me, our kids, and his parents, it was two and a half minutes of the greatest celestial events we’ve ever witnessed.  I can still close my eyes and see it.

It was amazing enough to view and experience this event in person, I’m so thankful and proud of my husband for capturing a photographic record of the Great American Total Solar Eclipse.

Below are some of my favorites, check out his Total Solar Eclipse album for more.

Totality with the corona shining brightly around the moon.

Total Solar Eclipse 2017

Total Solar Eclipse 2017

These “solar prominences” (not to be confused with “solar flares”) are awe-some.

Prominence Closeup

…and the chromosphere of the sun peaking around the lunar limb, about 26 seconds after totality was done. (His words, not mine.)

The show’s finale came just after totality ended, the sun’s light peeked around the edge of the moon creating the spectacular “Baily’s Beads” effect. 

Total Solar Eclipse 2017

Closeup of Baily's Beads

For me, seeing the Baily’s Beads is what I’ll remember the most from that day. So brilliant!

As annoying and distressing the clouds were that day, they really added a different dimension for some of the pictures. We were fortunate that a clearing of the clouds happened just minutes before totality, then they came back right as totality was ending as shown here.

Total Solar Eclipse 2017

Before that day, I really didn’t know what to expect and honestly had no idea how cool it would be.  As we drove home and in the days that followed, I’ve tried to come up with the right words to describe it all.

Amazing, awesome, terrific and magnificent!

Simply put, it was “out of this world.”

 

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