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.


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.

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. 😊

My Son Wants You to Know He has Autism. 5

puzzle piece

Last week I shared Seven Things I’d like to Write About. I’m working on the great Eclipse post – it takes a time to get pictures downloaded and embedded! Until then, I’ll jump ahead to the last one on that list.

My son, he’s ten, has high-functioning autism. Yup, betcha didn’t know that. I didn’t either until about a year ago. I’m ready to start sharing about it.

I’m sure that one may have come as a shock for some and maybe as an “Ohhh, that explains it all!” for others. 😉

It’s been a long journey and I wasn’t really ready to write about it or share too much since it’s very personal.  I’m also a protective Mama Bear who wants to shield my son’s reputation. Plus, it was only a year ago that we received the official “high-functioning autism” diagnosis after years of scratching our heads and wondering what the heck was going on with our son.

Now, a year later, I feel like I still have sooo much more to learn yet I’ve also come so far in my understanding – and most importantly in my accepting – of  the autism spectrum and how it relates to my son in particular.

That said, I still hesitate to share for a few reasons that I hope you’ll keep in mind as you read and comment (I love comments!!):

~ I hope no one suddenly avoids my son or treats him differently now that they know. He’s still the same sweet, wonderful, energetic “normal” kid.

~ At the same time I do want people to approach him differently now that they know he is different.

~ I seek and welcome support and encouragement and resources but I’m not looking for a “cure” or a “magic pill”…or any “second opinions”.

~ There are many families who have children on “the spectrum” but all children are still unique.  My child and another’s child may both “have autism” but our situations can still be drastically different.

~ Since I’m still “new” to this autism world and have a hard time keeping up with always-changing politically correct terms, I hope I don’t say anything that may offend others.

That all said, my son keeps telling me that he wants people to know.  One day last year, shortly after we’d told him about his autism, he came home from school and asked me,

Does the whole wide world know yet?

About what?

That I have autism!

Oh…no, not the whole world…do you want them to?


Well, I guess if he’s not shy about it, why should I be?

I’m ready. Ready to share our journey.

For my son – so others will understand him better.

For me – because my therapist (yes, I have a therapist, doesn’t everyone?) suggested writing about it might help me process it all and let others “in” on what we’ve been going through.

For YOU – so that by sharing some of our challenges I might somehow help you in whatever struggles you face within your own families. (And so you’ll know you’re NOT the only one with challenging children.)

I’ll end there for now – it’s past my bedtime! I plan on sharing bits and pieces of our journey and struggles as I can in between other unrelated blog posts so stick with me, this will be a crazy-wacky ride!

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