Autism


“I Have Something Special In Mind for Him” 2

Thank you to all who’ve commented, online and in person, about the posts I’ve shared about our son and autism. Before I decided to share our story here, I honestly felt scared. I wasn’t sure how people would respond or how it might change relationships for my son or our family. However, once I opened the gates to my vulnerable heart, a flood of love, support, and encouragement rushed in.  Thank you.

You can read all the posts I’ve shared about our son and autism here.

I started sharing these posts in September 2017 but I originally wrote them privately as we were going through it three years ago, 2014. It’s been incredibly helpful to go back and read through them for myself and then to share them now. I’ve almost reached the “equal point” where the past meets our present location.

Here’s one more I wrote that I go back to frequently, especially after difficult moments when I wonder what in the world God was thinking when he thought I’d be able to handle this.

November 2014 –

I’ve been doing a lot of self-searching and re-thinking about myself, our son, and how I approach life and all the overwhelming parts. We’ve still had struggles, but for some reason they seem to be lessening in frequency and intensity. Maybe it’s just a nice phase but I’ll take it and enjoy it for now.

The last major tantrum he had, that I can remember, was a few weeks ago while in adoration – of all places. He had been begging me to let him come with me to our regular Saturday afternoon hour but I always said no because, as much as he always promised he’d be good there for the whole hour, he never was.

But this time he begged, Please! Because I need to get ready for my first Communion!

How could I say no to that?

Well he did pretty good for the first oh, 20 or so minutes, and then he was done. Without going into all the annoying details, suffice it to say that the baby probably would have acted better in there than he did that day.

It didn’t help that I had chosen that day to bring my journal along with me so I could really get my feelings out about the whole situation. Our family therapist had suggested I journal how I feel “in the moment” of his tantrums. And boy oh boy, he gave me every opportunity to write exactly how I felt!

If you were to read that journal entry, you’d probably think it was the writings of an insane bi-polar crazy lady. It started out nicely, positively, but then ended up in a hot scribbled mess.

I glared up at Jesus, present there in the silent Eucharistic host, pathetically pleading with him to save me from all this.

Can’t you see my misery? Why don’t you do something instead of just standing up there watching? 

What started out as a peaceful getaway to spend some quality time with Jesus and my son was now more like a hot boiler room with the boiler about to explode.

And I did, I burst into huge sobbing tears. Everything came out, all those emotions I’d been bottling up were finally released. It was ugly.

Eventually, I calmed down enough to look back up to Him, asking Him for some sort of consolation. And I got this –

I have a special plan for him. TRUST ME. I need you to trust me and know that I have something special in mind for him. [And for you and your family.]

I’d heard this before, during his pregnancy and in his infancy years. Deep down, I knew God had something special in mind with this one. Not that He doesn’t with the other three, but there’s something…different…with this one that I’ve always felt.

Hearing those quiet words – like a quick burst of energy in my heart – calmed me. It re-focused me and helped me remember.

Things might be hard right now with him. Very, very hard. And there are days when I don’t understand him at all and really just want to be able to enjoy my sweet son again but can’t because I can’t see the good through all the bad.

But if all I do is focus on the bad, I’ll never ever see the good that God sees in him. I may even rob whatever it is God has in store for him if all I can do is be exasperated with him all the time.

But there is good there – much, much good!

So I’ve been praying more – like really praying. Not just assuming God knows I need him. I’m praying – out loud. 

Not just when I’m calm and “in my window”, but when I’m out of it, or know I’m about to flee. I send a quick plea for help –

Jesus, be with me! Inject your grace into my heart right now – like the cortisol running high in me. Be my stress-relief. Be my survival-plan. Be my peace. Help me stay calm right here, right now, in this moment. 

And you know something? It’s been helping – tremendously. And because I’ve been able to remain calmer in those moments more, so has my son. It’s not perfect – never will be. But I feel like we are improving, and that’s all I want for now.


My Son knows He has High-Functioning Autism and He’s Proud of it! 3

(Source: https://www.pexels.com)

After we received the official “High-Functioning Autism” diagnosis a year ago for our son (9 years-old at the time), we knew we’d need to tell him but weren’t quite sure how we’d do it or how he would react to it.  After talking with good friends, whose son is also on the spectrum, and praying about it we decided to approach it by focusing on his brain and how it works differently.

As an aside, while saying goodnight to him in his room on the evening of the same exact day we received the official diagnosis from the psychologist but before we told our son, his eyes suddenly lit up and he excitedly blurted out,

My brain is SOOO different!

It caught me off guard and gave me goosebumps. Did he know?  Unless he could read my mind or read the papers from the psych, we hadn’t said anything about this to him before. My heart calmed down when he explained that he’d been reading about the brain at school and how different everyone’s brain works and he found it all quite fascinating. For a few months, “the brain” was the main thought going on in his own brain. He talked about the brain, asked questions about the brain, read all he could about the brain and decided he would become a “brain doctor” one day.

We decided to use his current brain fascination as the lead in the conversation we had with him shortly after the diagnosis day. After family prayer, we asked him to stay with us on the couch before sending him to bed.

“Son, remember how we’ve been talking lately about your brain and how everyone’s brain works differently?

-Excited Nod.

“And you know how we’ve been going to different doctors for a few years now to try and help you with your emotions and anger?”

– Slow nod, anxious eyes, as if he’d forgotten but now remembered…or maybe he thought we he was in trouble.

“Well, after meeting with Dr. X, we’ve learned that – your brain really is cool and it works very differently than many other people’s brains. In fact, your brain is so cool and different that there’s an even a special name for your kind of brain, do you want to know?

– He looks at us, intrigued.

“It’s called high-functioning autism.”

We let him take that those words in and then explained it a little more, telling him it doesn’t mean he is sick or that there is anything “wrong” with him, it just means that his brain works differently.

We told him that because of this, sometimes it’s harder for his brain to do things like control emotions and focus on tasks or make good choices. We told him we were going to help him, together we are all going to help him, so that even though this is how his brain works and even though it’s harder for him sometimes, we’re all going to help him learn how to do things as best as he can.

It was a good, simple conversation that I’ll remember forever. Later, after he went to bed, my husband and I felt relieved but also unsure how  – or even if – he would respond to this news.

In the weeks that followed, we only mentioned it to him again if the situation called for it. If he was having a hard time focusing or treating his siblings nicely, we used that as an opportunity.

“Son, remember what we told you? About the autism? Well this is an example of how your brain has a harder time with focusing or paying attention to others’ feelings.”

Or

“Son, I know this is hard for you – because of the autism – but I’m trying to help you work hard to focus.”

We weren’t really sure though if he understood – or even remembered – what we told him about having high-functioning autism. Until one morning, before school in the kitchen, he came over to me with a shy smile, like the one he makes when he’s been thinking about something and wants to share it but maybe feels a little funny about it, and then enthusiastically declared,

I have high-functioning autism!!

I stopped mid-chew. I was awake now.

I turned and looked at him, a little shocked and intrigued. I asked what made him suddenly say that and he just kind of shrugged,

“I dunno know, it just popped! into my brain and I felt like saying it.”

Ok, then. I guess he had listened to what we told him and had been thinking about it.

I asked him if he had told anyone else about it. We hadn’t planned on making any type of announcements to anyone but closer family and friends until he was ready (er, I mean until was ready). He said no at first and then…

“Well, I kind of told Bill (a friend in his fourth-grade class at school). Bob (another classmate) told us he has ADHD. So I told said, ‘Well, I have high-functioning autism!'”

“Wow. Ok, then. That’s great!”

We told him that was ok to tell others as long as he was ok with it. And that was that.

All that worrying I’d been doing about how he’d react and if he’d want to tell others. It’s funny how one can agonize over something and then, in one simple word or conversation, realize –

It’s all going to be ok. Chill.

I realized in that moment that my son is growing up in a very different time than I did, a time when “being different” isn’t so different after all.  A time when one kid can say, “I have ADHD,” and another respond that, “I have high-functioning autism” in the same way one might have said, “I have blue eyes,” and the other “I have brown.”

He went off to school that morning but I thought about what he said all.day.long. I guess I was just surprised and a little taken aback. I had just found out myself that he definitely has this and was trying to process it all. I had only started sharing the information with family and close friends, and then, just like that – he’s not only ok with it for himself but is ready to blurt it out to his classmates.

It wasn’t him that wasn’t ready to share…it was me. 

A new feeling grew in me. Pride, a good kind. I felt proud that he did pay attention to what we’d told him and that he had been thinking about it. Proud that he felt comfortable with it and even wants to share it with friends at school. Proud that he was kind of excited about it when he’d talked about it – like he’d learned something really cool about himself.

Because he did. 

I had felt afraid of how he would handle this information about himself, afraid of how we would navigate letting others know about it or not. Again, God showed me

TRUST ME. I GOTCHA COVERED.

Later that same day, while I prepared dinner, he suddenly blurted it out again with much more enthusiasm – like he’d been practicing it in his head all day and was finally ready to hear the words out loud.

I HAVE HIGH-FUNCTIONING AUTISM!!!

I stopped mid-stir, warm tears welled up in my eyes (or maybe that was the onions?) and my heart swelled with gratitude and pride. I gave him a big squeeze hug (he loves when I give him squeeze hugs) and asked if he’d been thinking about that a lot. His eyebrows shot up, along with his arms, and he loudly proclaimed,

“Yes!!! I’m just SOOO interested in it!”

Wow! Ok then, that answers that question.

My son has high-functioning autism, he knows he does and he’s proud of it!

(See all posts about our son and autism here)


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)


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)

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