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Autism Self-Care Special Needs

Recovering from Autism Recovery: What They Don’t Tell You About Early Intervention

Perhaps you are the parent of a child who has been newly diagnosed with autism or you see the red flags and suspect the diagnosis. I have walked in your shoes. I have been where you’re at right now. And, I know it is overwhelming. There is so much to process and so many fears …

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?”

For more like this in the future, you can subscribe to the blog or follow me on Facebook or Instagram. Check out more special needs resources on my Shop page, as well. Other posts you may like:


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