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Autism Self-Care Special Needs Type 1 Diabetes

When Your “P” Won’t Come

You know that feeling you get when you embark upon that exciting rollercoaster for the first time? The one everyone has raved about? I’m not talking about the wimpy “gentle” ones, but the really badass kinds, the kinds that leave your knees a quivering pool of jelly the moment you exit? Maybe you’re a thrill-seeker and you’ve been looking forward to this adventure. Or, maybe you’ve been dragged on this ride by someone else quite reluctantly. Maybe you thought you wanted to check it out, but now that you’re loaded up and on board, a twinge of cold feet is setting in. Whichever the case, your seatbelt is strapped and there is no turning back now. Your heart starts thumping, your pulse is racing, and your palms are sweaty as you nervously clutch the harness. You try not to think too hard about how that harness is the only thing holding you in, keeping you from plummeting to your death when that coaster kicks in. Gulp. An array of nervous thoughts flow through you as your trolley slowly climbs that first hill. You start asking yourself “do I let go and allow myself to thoroughly experience this or do I hang on for dear life and pray it’s over fast?”

I’m usually in the later camp. I tend to seek out the wild rides, only to experience a hint of cold feet once I’m headed up that first steep cliff. There are times when I’m taking it all in, enjoying the rush of adrenaline. Other times, I start wishing the ride would end and hope I don’t toss my cookies all over the people in front of me. There are some rides I just have to be in the right mindset to attempt. The Hulk at Islands of Adventure in Orlando, Florida is one of those rides. The first time I rode it, I was feeling pretty adventurous, but as soon as my cart catapulted into the air at lightning speed, I felt my heart lurch into my throat. My pulse raced so fast, I almost wondered if I was experiencing a heart attack. The intensity of adrenaline was tolerable at first, but by the middle of the ride as I was tossed around each loop, I felt the urge to close my eyes to survive it. I kept thinking to myself “if I could just pause it for a second, I can catch my breath.” But the ride didn’t pause. It kept looping and flopping in every which direction, hoisting my petrified numb limbs along with it. Finally, the ride slowed for a couple of seconds, allowing me to bravely reopen my eyes and survey the landscape around me. “Whew, I’m still alive,” I comforted myself and tried to calm my racing pulse. But, then I realized, I was only climbing another steep hill. So, instead of catching my breath and regaining my strength, I was too distracted in fearful anticipation of what crazy intense drop lay ahead at the top of that next hill.

Though I really loved the ride and thought it was one of the most exhilarating roller coasters I’ve ever experienced, I really appreciated it the most when it was over. I can’t tell you the relief I felt when the harness released me and I placed my wobbly feet back on solid ground. I was appreciative of the opportunity to experience it, but I definitely needed a little more time before I was ready to brave that adventure again. But, imagine for just a moment that relief never comes. What if you were stuck on that rollercoaster forever, with no hope of ever stepping off? Can you imagine the panicked feeling of knowing there was never an end in sight? You were destined to experience the highs, the lows, the loops, the descents, and the heightened state of adrenaline continuously for the rest of your life…

This is the best description I can think of to depict what it’s like to be a special needs parent. Sure, there are some exhilarating moments. And, maybe the thrill seekers are well equipped for the ride. But, even the most equipped would still eventually look for an ending. And the ending never comes. Just when the ride slows down and you hope to catch your breath, that next ascent up the hill arrives, leaving you in dreaded anticipation of what awaits you over the cliff.

It makes sense, then, that there are a huge percentage of special needs caregivers who live with Post-Traumatic Stress Disorder (known as PTSD). The constant state of heightened adrenaline, the dreaded anticipation of being launched over that cliff, the turmoil and chaos that ensues daily as you try to meet your child’s many needs. When you live in this chronic state of stress and anxiety, it is enough to overwhelm the nervous system. When people think of PTSD, they tend to think of veterans of war, affected by the trauma of witnessing massive explosions, horrific and graphic casualties, or experiencing the loss of some of their fellow comrades. One does not usually consider a parent caring for chronic medical or special needs as a qualification for “trauma”.

But, imagine these scenarios for a moment:

  • You never know when the next public autism meltdown will occur with your child. You’re always bracing for it. Constantly in a heightened sense of alertness, combing the entries and exits for an escape plan the first sign of threat.
  • You wake up with nightmares every night, reliving the time you had to administer the life-saving glucagon shot to your unconscious child in hypoglycemia to save their life. Every time you close your eyes, you picture your child lifeless on the floor.
  • You have to help restrain your panicked, flailing child as they scream through one more set of needle pokes, MRI scans or IV fluids.
  • You watch helplessly as the surgeons once again wheel your child away to the operating table for another surgery, unsure of what the results will be.
  • You recieve a call from the school, informing you that your child has been bullied and physically attacked once again by their peers.

Now, imagine these situations were a daily occurance for you. You live each day in constant fear, constant hypervigilance and the same nightmare replays over and over like Groundhog Day. You can start to see how the label “trauma” is an all too accurate description. I think a lot of parents don’t know they are living with PTSD. Perhaps it’s because that “P” kind of throws us. The word “post” implies that our trauma is now over. That we are now living in the aftermath. But, for a lot of parents, it will never end. There is no “after” until we have left this Earth. But, even then, so many parents face the biggest fear of all: what happens to my child when I am gone? Who will care for them then?

So, what do we do when our “P” won’t come? How do we cope with this rollercoaster of life? Do we clench our teeth, close our eyes, and hunker down as firm as possible while the ride loops on forever? Or, do we take our hands off that harness and live in each moment, wherever that trolley decides to throw us? Either approach will not stop the ride. So, it’s up to us how we choose to spend it. I am no trauma therapist and do not pretend to be an expert in this field. I also recognize that my trauma experience may look different from another’s trauma. But, I do find that the mindfulness approach improves my coping skills significantly. Researchers have confirmed that when applied correctly, mindfulness practices can be very helpful in relieving some of the symptoms induced by toxic stress and PTSD.

Mindfulness, in a nutshell, is a practice of being present in the moment. It is an awareness of the sights, sounds, smells, tastes and touch we experience in our environment, free of judgement. Though it was derived from Buddhist traditions, what mindfulness looks like for me is a release of control to God. It is recognizing that I am not the rollercoaster conductor. Whether I like it or not, my life is in his hands. I can clench, scream, close my eyes, or vomit. I can live in fear of what bump or tilt lays around the next corner. But, that fear will not magically change the rolleroaster’s course. For a control freak like me, this is a concept I struggle with on the daily!

“And, which of you being anxious can add a single hour to his span of life?” Matthew 6:27

“Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” Matthew 6:34

How will you handle this rollercoaster of life? I know my “P” may never come. Or, perhaps my child with autism is high-functioning enough that there will be a “P” for me. Perhaps there will be a miracle cure for diabetes in my daughter’s lifetime. Time will only tell. I choose to let go of the worry of tomorrow and focus instead on the gift of today. For now, I’ve traded in my “P” (“post”) for a new “P”: “Present”. And that is how I live sufficient for the day.

*If you or someone you know appears to have symptoms of PTSD, please consult a mental health or medical professional. This blog is not intended as a substitute for mental health treatment.

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Autism Self-Care Special Needs Type 1 Diabetes

“We Were On A Break”

I’ve always been an extrovert. Growing up, there was nothing worse in life than missing a party. If there was a social event, I was there. I drew energy from being around other people and large social gatherings. In fact, I could almost feel my tank emptying when I was forced to spend time alone. You could describe me as talkative, enthusiastic, social and usually in search of the spotlight. I could walk into a room full of strangers and within three minutes, I’d have a group of new best friends. Then…I had kids.

And, motherhood came in like a wrecking ball. In those early days, I functioned in a constant state of bewilderment and sleep deprivation. I couldn’t understand why it looked so easy for everyone else, while my babies screamed bloody murder wherever we’d go. They never slept. They hated the car seat. They hated the noise. They hated the quiet. They hated baby-wearing. They hated being left alone. I struggled tirelessly to find that magic formula that would convert my colicky children into the quiet, happy, cooing little babies I’d see all my friends had been gifted. Looking back, I believe it was early sensory sensitivity that caused all the commotion. But, I had no idea how to make sense of it at the time. All I knew was I had to give up on my social life. There is no going to lunch with friends, when you have to leave the restaurant after 5 minutes. There is no gabbing casually on the phone with a friend when your kid is howling like a screech-owl in the background. It was extremely isolating. And, I found myself gravitating towards the life of an introvert, because of the anxiety that accompanied public ventures with my kids.

As our kids grew older, I was able to slowly ease back into social opportunities. However, we struggled with new challenges as a result of their disabilities. Living with autism meant one could expect an average of at least 2-3 meltdowns per outing when our son was younger. Can I just tell you how exhausting that is, both physically and emotionally? Can I also tell you how exhausting it is to send your daughter with Type 1 Diabetes to sleepovers weekend after weekend, terrified that she could die in her sleep while in someone else’s care? The spontaneous parties thrown together on a whim that other people take for granted are simply not an option for our household. Socializing requires massive planning and preparation. We must stock and carry a full inventory of medical supplies and snacks on us at all times, including my daughter’s emergency glucagon shot. Every social event that involves my T1D requires substantial coordination on my part with the parents or hosts of the party to ensure that they understand the necessary basics and emergency protocol. And, though our son has made tremendous progress with public outings, he still often requires advanced notice of what to expect on the agenda, warnings of when transitions will occur, and what the social rules entail. Pile all that on top of each other, and some days, it’s JUST.NOT.WORTH.IT!

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It took some time in therapy to identify that I was struggling with social anxiety. Me. The social queen. I scoffed at the notion. How could I possibly be averse to social situations now when they had always come so naturally to me most of my life? But, once I considered the validity of the social anxiety {when I have my kids} theory, I was able to formulate some coping strategies. Though most therapists don’t recommend becoming a hermit as the answer, it was exactly the answer for me. I was so overwhelmed as a special needs parent that I had to identify what stressors I could easily remove in order to even find my battery to focus on recharging it. As it turned out, most of my stressors involved meeting social demands. So, I decided to take control and in the words of Ross Geller, I went “on a break!”

I took a break from volunteering, from social events, from acquaintances, from church, and just about anything or anyone that started setting off those anxiety triggers. I took that time instead to find myself. I explored hobbies, started a new part-time DREAM job that I loved, and focused for the first time in years on myself and my self-care. And, it worked! That is when I truly started to heal.

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So, here are some lessons I learned while “on a break” I will impart to you:

  • Living independent of others’ expectations and opinions is so freeing. I love the quote my husband often preaches: “What others think of me is none of my business.” Try it and I guarantee it will reduce your anxiety by more than half! When you finally decide you don’t care what others think or live indebted to their obligations, you learn the power of saying “no”. What a relief I feel each time I say that lovely little two-letter word! 😉
  • Finding a hobby or creative outlet is a healthy way to send positive signals to our brain we are so craving when bombarded with negative alerts day in and day out. Our daughter with Type 1 Diabetes is usually not enthusiastic to join diabetes support groups or advocacy campaigns. When you live with this disease 24/7, sometimes you just don’t have anything left of yourself to give. Many well-meaning friends invite us to different diabetes events to offer their support. These events mean a lot to me, personally. I find the community support so helpful. But, I’ve learned that it is perfectly okay to decline some invitations for my daughter’s sake. Everyone copes in different ways and our daughter prefers not to give diabetes anymore time than she has to. Instead, she finds enjoyment and escape in her artwork. This is what brings the smile back to her face after a rough day of battling blood sugars or insensitive peers.
  • It is possible to grow in our relationship with God when we remove the middle men. Another words, it’s okay to tell church “we’re on a break.” Yes, I know. This one might be a bit controversial to some. (I could write a separate piece alone on special needs in the church and probably will!) I found that church was too painful during my time of grieving. Not only was it hard to find childcare workers who were equipped to handle our children’s needs, it also forced me to go deeper than my soul could handle at the time. Many of the Sunday messages focused on not getting stuck in the cycle of bitterness. Well, I was stuck indeed and not going anywhere for quite some time. I just wasn’t ready to go forward as fast as the messages wanted to take me. I needed time off alone with God. Alone to move through the grief at my own pace.
  • You don’t have to figure out “why.” This was a tough one for me. I wanted to know what I had done to piss off God so bad! And have you ever noticed that when anyone is suffering, they are always referred to the book of Job? That damn book of Job is my Achilles’ Heel, I’m not gonna lie. I still struggle to understand why that chapter of the Bible is comforting to some. For me, I can’t seem to get to that part where Job has everything restored and doubled because I get hung up on where it seems God is letting Satan manipulate Him. I’m reading it the whole time, thinking “God, why are we negotiating with terrorists here??” After years of reading the Bible, I have still not found peace with that chapter, so I find that is is better for me not to dwell in that story very long. I suppose you could say the Book of Job and I are “on a break.” A very long 20-year break, so far…..
  • It is okay to distance yourself from the people in your life that are not good for you. This is not necessarily limited to the obvious “toxic” people, but even those who are just walking such a different journey that they can’t relate. For example, there were times where it just hurt too much to be around friends whose children were “perfect.” The matters they perceived as significant parenting concerns seemed so trivial compared to the issues I was facing with my kids’ disabilities. I came to the point where I recognized that I just felt drained, depressed and defeated when I was with them. It didn’t mean I wanted to stop being friends. It simply meant I needed to go “on a break” so I wasn’t inundating my spirit with constant comparisons of our children.

So, if you are struggling with depression, anxiety, trauma and burnout in your life, I encourage you to consider these points. Give yourself permission to take a Sabbatical. It might be time to evaluate areas of your life that are stifling your mental health, and identify areas that will add value instead. What people, thoughts or activities do you need to tell “we are on a break?”

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Autism Special Needs

The “A’’ Word

I recently commented on another blogger’s beautifully written post about going public with her daughter’s diagnosis. Her post resonated deeply with me. You see, it has truly only been within the last year that I have been able to utter the word “autism” when referring to my own son. Before, I would use phrases such as “he has some special needs,” “he has some quirks,” “he has a language delay” or even pushed the limits and said “he has ASD,” secretly aware that the average person usually doesn’t have a clue what that acronym represents.

It didn’t help the fact that it took us four years to obtain an official medical diagnosis. Our son often walked that line of “high-functioning” to the point where he could fool some mental health professionals on a good day. But every therapist and teacher that worked closely with him concurred that they had no doubt in their minds he was on the spectrum. It was confusing for us to know how to describe his condition when we had no medical label. We still received necessary services and early intervention for him regardless of the missing label. But, there were certainly times I felt compelled to explain his behavior to other parents and friends or family members and felt unsure how to proceed.

I’m not sure why I was so scared to say that “A” word. It weighed heavily as if my precious child would forever bear a Scarlet Letter “A” across his chest if I admitted the label to others. I was afraid that no one would ever see past that letter once he was branded. They might never see all the wonderful traits that I see. The clever little way his brain thinks, the sweet heart he has towards his animals and his family, the amazing laugh and infectious smile he has when he thinks something is funny. When I think of all the ways he brings us light, my mommy heart could burst with pride. But, oh, how easily others could rip that same mommy heart to pieces with one wrong look or comment in his direction!

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I vividly recall a time early on in his “tantrum” days when we tried to enjoy a weekend getaway vacation. In those days, we could barely go out in public with him, but we still proceeded with a dolphin show for our daughter’s sake. In an ordinary day for us, he had a complete meltdown, the kind of explosive screams that could peel your tires off your car. (If your child is on the spectrum, you know exactly what I’m talking about, right?) But, it just so happened that an elderly lady passing by was so startled, we thought she might need her smelling salts. The look of disgust and judgement was evident on her face as she struggled to find her composure again. The rage inside me boiled over and I immediately went into full-blown “fight or flight” mama bear mode. It wasn’t necessarily her fault that she was ignorant about autism meltdowns. At her age, she probably had not been exposed to advocacy and awareness. It was probably a wonderful opportunity to offer a learning moment for her. But, my grief and my pain did not care. If not for my darling husband (who knows my temper well), I am positive that I would have been arrested for assault on an elderly woman. In my mind, I wanted that “shriveled up old prune” to understand the pain that I felt and the deep-seated hurt that her nasty looks conveyed. My raging explosion trumped my 3-year-old son’s meltdown. Not my finest moment. ?

Moments before the epic meltdown…..

Somewhere around that same time period, I had a dream one night. A nightmare really. My son was in conflict with another child a short distance away from me. Her father witnessed the altercation and came to his daughter’s rescue. But I knew somehow it was all a misunderstanding due to my son’s communication delay. The situated escalated quickly to the point where the father was screaming at my son, threatening him. I ran to his side to intercede, full of fury. I frantically tried to explain that my son had autism. But I could not speak the word. It literally would not roll off my tongue. The dream stayed with me for a long time. That feeling of desperation, trying to explain and defend my son from danger due to his condition, haunted me for quite a while. But, I think it truly reflected the fears and the turmoil rooted in my conscious during a difficult time of processing my son’s diagnosis.

Though I’m still fiercely protective, time has passed and my grieving heart has healed. I have moved into the cycle of acceptance, an achievement I attribute most to the people in our lives who really showed up along the way. The people who saw our son for the treasure that he is. The therapists, the teachers, the counselors, and the friends who cherished him as their own. The ones who looked at him and saw all the unique little gems in him rather than just “autism” like it’s some elusive plague to try to understand or pity. These are the people who showed me that our child can thrive, can be himself and that the “A” word is not a death sentence.

My son has autism. There, I said it. I can now say the word the same way I can say my daughter has Type 1 Diabetes. Just as there are misconceptions and ignorance about Type 1, I can appreciate the same for autism. I now know that those misconceptions will never change if we simply try to hide our kids’ condition from the world. I think my greatest fear of all was that my children would be rejected by society. But, there is a meme out there that resonates well: “I would not change you for the world. But I would change the world for you.”

So, here I am seeking to change this world one blog post at a time. The world is blessed to know our son. They will know he has autism and a host of other incredible qualities, as well. I may concede and accept that “A” word. But, it is not the only word that describes him. He also carries “L” for loved, “C” for cherished, “W” for wonderful, and a whole slew of other letters.

So, when you look at my son and other individuals with autism, I hope you that you will think of some new “A” words, such as “Awareness” and “Acceptance.” If you are a parent with a fresh diagnosis, I offer you hope. Your child should not be defined by their autism. They are still the same wonderful unique individual they were before. The rest of the world just needs to catch up.

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Other related posts that might interest you:

Autism Family Home Self-Care Special Education Special Needs Type 1 Diabetes

He Knows What You Need

We’ve wrapped up our first week back to school and the second week is now well under way. Last week, I was filled with relief by a smooth transition back and comforted that both kids seem right where they’re supposed to be, following months of prayers and nervous deliberations about the right school/therapy placements. However, I find myself a little anxious again. The first week “high” is fading and all the little hiccups that naturally accompany two kids with multiple disabilities are starting to surface. The late nights dealing with blood sugar monitor malfunctions, the morning routine resistance when we’re in a hurry, the worries about social conflict and misunderstandings that pop up in autism, and the fight to keep my son in his AFOs in the afternoons are all just a few examples of the challenges that come up. It’s a rather tiring juggling act each and every day.

In the midst of these challenges, it’s hard not to go back to that dark place where I start to wonder and ask myself “why me?”, “why my kids?” over and over again. After a long year of nonstop hiccups last school year, my soul longs for peace. The journey has been long and I’ve been weary from the burden of worry and battle on behalf of my children. New opportunities like homeschooling for my daughter opened this year that have relieved some of those burdens. But, with the special needs life, even when your kids have the right supports, there will always be some hicccups. There will never be the perfect life, free of all problems.

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Though I know I can’t be surprised by problems, the first signs of hazard can bring a sense of dread in a battle-weary mama like me. For a few moments this week, as I lay my head on my pillow, I felt those oh so common feelings of despair creep back in. The “what if’s” played through my mind:

  • “What if this year won’t go as well as I hoped?”
  • “What if things never get better?”
  • “What if my kids fall behind and never catch up?”
  • “What will become of my kids when I’m not there to help them?”
  • “What if I can’t sustain the help? How long can I live like this? Always fighting? Always trying to keep up?”

Sleep deprivation always compounds these negative thoughts. But, yesterday morning’s “verse of the day” devotional arrived at just the right time:

“And when you pray, do not heap up phrases as the Gentiles do, for they think they will be heard for their much speaking. Do not be like them, for your Father knows what you need before you even ask.” -Matthew 6:7-8

For your Father knows what you need before you ask. Yes, He does. He knows my children’s needs even more than I do. He knows where and how to meet those needs. And, I was once again reminded that it is not MY job to meet their needs. It is His job. It is mine to listen and follow Him. I am comforted because I know we have heard clearly from Him this school year. I can rest knowing that we have done our job.

The hiccups and challenges may still come but I can be at peace knowing we’re on His path. A weary traveler may need to take a break and rest from time to time and that is ok. Yesterday, He showed me that He knew MY needs before I even asked: a good catnap! So, I obeyed, even though I had a million things I wanted to accomplish. I woke up refreshed and renewed, at peace to pick up on the trail where I left off. It is easier to hike the path knowing it has what you need along the way and that you have One who has gone before you to direct you upon it. We continue to follow and believe that He who called us will equip us (Phil. 1:6). We may stumble and fall from time to time, but His journey will not fail. I know this because He assured me He knew what we needed before I even asked.

What needs do you or your children have today? Rest easy, friend. He already knows before you even ask.

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