Autism


Learning to Drive Autism

I’m still here! Are you? Now, where was I?…

Oh yes, last time I blogged about autism and our son I shared how God reassured me in that He “has something special in mind for [my son].” As I noted there, I started sharing these posts in September 2017 but I originally wrote them privately as we were going through it three years ago, 2014 and the last one I wrote was a year ago (2016).  And now, it’s time to write new ones. It’s hard to catch up on a years worth of life! Feel free to come along with me as I stumble back through a year of fragmented memories.

We received the official High Functioning Autism diagnosis (used to be called Asperger’s Syndrome) in September 2016.  As I said before,  I felt relieved to receive the verification of what I’d suspected about him. Though I didn’t want him to “have Autism”, I felt a certain satisfaction knowing there is something that explains his behavior.  I didn’t know exactly what it all meant or where we’d go from there but, as a friend put it to me – At least now I knew what road we are on. 

Well, I’d like to say life was easier after that – and in many ways it was because I at least had the big question answered. I felt like I finally had the right key to the car I’d been sitting in and I felt very excited that I finally had the answer.  But then…I sat there in the car and realized I had no idea how to drive or where I was even going to go! This was no self-starting, self-driving smart car – nope – this was a good ol’ stick-shift-and-clutch kind of machine.

It didn’t take long after the diagnosis for me to feel almost as confused and helpless as before.  I guess I naively expected that someone would call me and offer to take my hand as we walked through this new path with our son.  “They” would explain autism to me and how it related to our son. “They” would tell us exactly what he needed and where to get it. “They” would be there in his “out of the window” moments when I had no clue how to handle him and “they” would tell me exactly what to say or do.  “They” – the experts who knew more than my husband and I  – would teach us, train us, encourage us, and guide us.

I looked for “They”, calling around different “autism-specialist” places in our area hoping “They” would take pity on me.  Instead, I ran into wall, after wall, after hard-concrete-reinforced-wall.

Yes, we’d love to help…would you like to add him to our two-year waiting list? Bam!

Yes, we offer free services….but he’s not severe enough. Bam!

Sorry, he’s too old (most “free services” end at age 5). Bam!

Um, how much will that be….oh! Each time for how many times each month or week?  Yikes.  Expensive!!!! Bam!

And, a super-high insurance deductible we’d never reach before paying burning a hole through our pocket and our savings. Bam!

Once again, I felt trapped. Trapped in the gap.  The gap between typical and severely atypical, the gap between too young and too old, trapped in the gap between making too much money and not enough.

Looking back, however, I see that I was also trapped in my own grief. Yes, apparently grief comes not only after the death of a loved one like I was already experiencing, it also comes after a life-changing diagnosis.  And, like death-related grief, there are normal “grief stages” one goes through.  Without realizing it,  I was in the Denial and Isolation phase about the autism (like with my dad’s death) even though I told myself I accepted it.  I both yearned for help to walk us through this journey and, at the same time, recoiled and just wanted my son to “be normal”.

Looking back, I think one reason I didn’t find the help I sought was because I was looking for someone who would make my son “normal” again – and our life easier.  That person did not exist because that was an unrealistic expectation. 

I also assumed “They” were the experts and knew more than we could about how to help our son. I assumed everyone else – the therapists, specialists, teachers – would be the ones to tell me what my son needed and what we needed to do for him.

I had the key. I started the car. For a while I sputtered along awkwardly riding the clutch and grinding the gears trying to decide which gear to shift into next, still unsure of our destination.

Then, slowly, slowly my foot eased off the clutch and the gears didn’t grind quite as loudly. I prayed more for acceptance than for a miraculous “easy button” to suddenly appear. I prayed more for guidance – that God would lead me to the right resources and the right people.  I prayed more for grace-filled patience to deal with the out-of-control moments.  And He answered me.

I waited expectantly for the LORD, and he took notice of me and heard my cry.

With my husband’s encouragement, I took steps to make sure my needs were taken care of so I could function better and have the physical and emotional strength I needed for my family. I joined the Y and developed exercise routines; I found a great doctor and counselor to navigate me through all the grief and confusing emotions that go along with parenting a child with unique needs; I searched for books and podcasts and other resources to give me a better understanding and perspective of the what and the who of Autism; and I simply took time to just be with God and enJOY Him in the subtleties of life.

For everyone who asks, receives; and the one who seeks, finds; and to the one who knocks, the door will be opened. (Matt 7:8)

I reached out to a local parent-to-parent group and met a mother whose son had similar struggles as ours and I found a  support group for Catholic Mothers with Special Needs Children – it was the group I didn’t want to need but when I finally started going I knew it was the group I needed and wanted.  Though we all faced our own unique challenging children, we all shared the same hopes and prayers for them and our families. I discovered how powerfully encouraging these simple words can be:

Me too. 

or

My child, too. 

Slowly, slowly – God breathed His Grace through me and slowly, slowly my grief turned into hope and I began to see the joy and peace in myself, in our son, and our family.

May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the holy Spirit. (Romans 15:13)

About six months after the diagnosis, we finally found a therapist who was an “autism specialist”, didn’t have a two-year-long waiting list, was located on our side of town, and was more than happy to work with us and our budget. Through that, the support groups and resources I plugged into, I feel like I’m finally getting the hang of “driving the car”.

I still ride the clutch and grind the gears more often than not and I’m still not quite sure where the heck we’re going, but I’m going – and that’s the first step to getting wherever we’ll end up.

What I am doing, you do not understand now, but you will understand later.(John 13:7)

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


“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)

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