There are stages that all parents pass through as they begin to process a special needs diagnosis. And it’s important to know that these stages or phases exist so that you can be mindful that any negative feelings or reactions can and will pass. And when I say special needs this includes physical, emotional, social, behavioral, or learning disability/difference. There’s a clear range, everything from the kiddo with a 504 plan with mild sensory integration issues, to a nonverbal kiddo with major medical challenges. Whatever the level or type of special needs, parents and caregivers need to process the new path they are on. Are there positive stages and phases? Of course, but those aren’t likely what hang most parents up.
I write this as a mother of two special needs kiddos. With my older son Harrison, I often felt incredibly isolated, misunderstood and stuck in a stage or phase that didn’t serve either of us well. Later, I realized that the struggle was within me, not him. It was after my son Lazlo was born (when Harrison was thirteen) that I was able to show up as a very different and much more effective parent because of time, self-care, mindfulness and awareness of these stages.
As a caveat, in addition to autism diagnosis for both sons, Harrison also has epilepsy and has had some other long term medical challenges. And, before Lazlo was born we were pregnant with a daughter, Sophia, who had Trisomy 18, a 95% fatal condition within the first year. I wrote about her passing in 2012. And later I published a poem “Wisdom at Sweeties” about our memorial tattoos for Sophia. So while I often write about autism and developmental delays, I have had some ongoing experience with processing medical challenges in special needs kiddos as well.
This is typically the moment when either your sneaking suspicions are confirmed by a psychologist, pediatrician, or similar specialist. Or you are blindsided, like I was, by a diagnosis when I thought I was just going to get a little expert advice for helping my toddler. Or perhaps, this might appear in the form of reading a book about a condition and knowing instinctively in the quiet of a bookstore aisle that these challenges or traits are exactly what’s happening. It might also be a trusted friend or care worker coming to you nervously about their concerns. All of this to say, it may come on slowly like a brewing storm or like a tsunami. And depending on a plethora of other factors, you might move directly into the next phase or need more time to process and find your feet.
What does lingering in the shock phase look like? There can definitely be disassociation. I would over work, staying busy to avoid processing the feelings. I noticed many out-of-body moments while driving or waking from a nap. I would suddenly realize I didn’t recognize where I was–whether that was in my room or on a highway or why I was driving there. Or the phone would ring and I’d answer and be talking and realize I didn’t know who I was talking to. Panic attacks can even surface if a person is stuck in this phase long enough without processing the feelings around the news.
This phase might fluctuate and be within yourself or those around you. It often comes out as avoidance and silence, all while suppressing fear and anger. But, it’s normal because we often need to adapt to the immediate demands of our lives rather than be paralyzed. If you are in denial, it shouldn’t be shamed. Be gentle with yourself. If those around you are denying your kid’s diagnosis, it can feel like a form of gaslighting. Grandma or your best friend who has a child the same age don’t think there’s a problem. They say you are over-reacting. For myself, I would read books, but not believe the diagnosis. I would look for clues or errors in doctors’ evaluations of him. I downplayed how much work emotionally and physically caring for Harrison was demanding. Some family members and friends would say things like, “he’s fine, all kids are different, it’s no big deal.”
If you have a partner, denial of a diagnosis can be a huge influence on the relationship. If you and your partner are of the same general view and want to take the same approach for caring for your child, then it might bring you very close together, where you feel deeply understood and supported. However, if you don’t have a partner (Harrison’s dad Ed and I split up just before Harrison’s diagnosis, not because of it), or if you and your partner are in denial about the diagnosis, then the weight of it can be too much for even the most seasoned relationships. Ed and I joke that splitting up before Harrison was diagnosed was a godsend in that we’ve always had a mostly amicable co-parenting relationship. And as each of us could get real breaks from Harrison’s care, time away gave us the room to both work and care for ourselves in distinct and equitable ways. If we had been together, the power plays for whose work was more important would have been incessant. In my observation of many families, one parent tends to take on the lionshare of the emotional and sometimes the physical aspects of parenting a special needs kiddo–and the resentments and repercussions of not getting their personal needs met first, are detrimental.
I hovered in this phase for a few years. This is the phase that I personally feel like was the most toxic. When I had to delay going into an MFA program or when we didn’t get a birthday invite from a friend’s child or when a kid at the doctor’s office asked if Harrison was a kid or a monkey because of the noises he was making–Whew! All of these were sparks. I felt I was a righteous victim and wanted anybody’s ear onto whom I could direct my wrath. To identify as a victim wholly is a visceral experience. When I was in this phase, I was the most unconscious and felt a physical heaviness. I was blinded by my own pain that I often couldn’t see what a fabulous kid I had.
Part of my victim mentality was imprinted growing up in an alcoholic and dysfunctional environment. Previous traumas can get shaken up with a diagnosis that’s unrelated. But the other contributor to my identity as a victim was existential. I was coming to grips with how I viewed God and my evangelical Christian upbringing. I felt myself not buying into the idea that anyone not a Christian was going to hell. Or hell itself. I knew I didn’t resonate with the idea that God gave me a child with a disability because I was an inherently bad or sinful person (one branch of religion) or that God was either testing my faith or trusted that I could “handle” it (another branch of bologna). When I was finally able to get out of this stage, (it unfortunately happened in fits and starts), I’d like to say that I became self-aware and zen about my new life and identity, but that was not the case. Regardless of my own walkabouts towards consciousness, I suggest that becoming aware and practicing self-care and love is the one way to move out of this negative, cyclical thinking.
Another phase parents (and I was no exception the first time around) can get stuck in was going to find the perfect therapy, remedy, or service to heal or at least alleviate a kiddo’s ostensible challenges or differences. Harrison was diagnosed in the late 1990s, a time when less was known about autism, and some legitimate sounding doctors with special needs kiddos were pointing to all kinds of theories and ideas about the cause. I jumped on that train for about four years, draining my savings and retirement like so many parents who long to fix or help their child. I’m not against good science-based therapies, but along the way, I have heard or read in all kinds of journals that the following can contribute to autism:
As exhausting as this limited list may be to read, equally exhausting are the so-called remedies that so many parents are desperate to try. I was repeatedly promised by seeming professionals that Harrison would be mainstreamed into Kindergarten with their treatment plan. Luckily, I didn’t do any of the overtly riskier ones like IV chelation or vitamin B therapy, Hyperbiotic Oxygen therapy, or stem cell therapies), but to be honest, at that moment with the right funds and influence I could have been talked into some of these, I’m sure. The feelings of helplessness are palpable, but I later learned they are a choice. In addition to the direct danger to my child, I also did emotional harm by viewing him through the lens of a problem that needs to be fixed rather than a kid who is perfectly himself and worthy of my love and presence.
At the tail end of my four year Sisyphean effort to dissect autism from my son, I hit a wall. I knew the remedies weren’t helping. All of the hope, money, reading, and planning tanked and so did I. I had come home from a contentious IEP and called a friend to chat about it. While I was out running errands, she dropped off a bottle of scotch on my porch. “Yes, thank you.” I thought. It wasn’t at that moment that I started over drinking, but it was at that moment where I remembered feeling like the alcohol numbed out the part of me that felt raw or unraveled and unable to figure out a way to move forward. This was a dark few months. Lots of day drinking gin and tonics, wine with dinner and scotch over ice or neat at night before bed. One day a few months later, his teacher sent home a note that Harrison had a new word, he asked for “tonic water,” which I had let him have a sip of (minus the gin, of course). Somehow this note shook me up. I immediately thought of my depressed neighbor from my childhood: Pat, watering her yard with curlers and wearing a housecoat with a cigarette and a scotch in the same hand. To me, she always felt sad and tense. I knew I didn’t want to be like Pat, so why was I making habits that followed in her footsteps? Slowly, I came out of this numbing. It wasn’t linear, but I made some changes that eventually lined myself up for healing.
The first part of acceptance is self-care. It isn’t about mustering a feeling that isn’t there. It’s about feeling whole. I directly ask my family for help. I knew I wanted to try some meditation. I wasn’t a meditator and had only brief experiences in yoga classes that I had started to regularly attend. I heard about a free or donation based 10-day silent Vipassana meditation retreat. So I asked my mom and sister and her family if they could come to my place and watch Harrison while I attended. Five of the days, he was with his dad, but the other five my family stepped up. Afterwards, I think they had a better idea of the scope of caring for a high energy special needs kiddo. My brother-in-law Brian took Harrison and his cousin Joe boogie boarding and bike riding along the coastal trail. He said they did the 7 mile loop more than once and Harrison was ready for more. It was good to feel understood. No wonder I was always tired.
At the meditation retreat, I had about 10 hours a day for ten days alone with my own thoughts. It was very challenging. I left my phone in my car in a parking lot at a distance from the campsite in the woods of Occidental, California. No speaking or even much eye contact. Up at 4:30am and in bed by 9pm. Days 3-6 were the hardest, both because it was over the Christmas holiday, and I seemed to replay every worst case scenario, while trying to just breathe and focus as instructed on various areas in my body. Eventually, on day seven, I hit a rhythm, felt lighter, and was able to stay in the moment. So many consecutive days without having to talk or take care of anyone was a gift. I actually dreaded talking by the last day. It was a real mental detox, and the greatest take away was that I had trained myself to be aware during my normal moments like waiting in line. Also, I learned to make a space between a trigger or uncomfortable thought, and my response to it. I could actually see the thought in my mind’s eye and have time to ask myself, “Is that a positive or helpful thought or should I just let it go?”
Coming to a place of peace is necessary in order to move forward in any reasonable way. It looks different for everyone. Over time, I made exercise, yoga, short meditations (sorry, one hour Vipassana sitters) and intention setting, writing, reading or journaling a habit. Once I fully dropped into my own self-care so that it became routine, I was able to get curious about Harrison and how he sees the world. The funny part was that as soon as I made the shift, Harrison sensed that mom was happier, more fun, and interested in him. We started to joke, do activities like biking, jogging, boogie-boarding and skateboarding together, and he started to make gains like reading independently for the first time. Did all of the challenges evaporate? Heavens, no. But I now had the inner and outer resources to navigate them. And I could be present with him, even in difficult times, and not have it impact me personally. If he struggles, I’ve learned that I can guide him, but it really isn’t my personal business in the sense that it isn’t a reflection on me, nor is it my emotional toll to carry. He is his own person that needs respect, love, and freedom just like we all do.
Though I no longer feel like I’m in an emergency, I can liken it to the airline safety message: “Put the oxygen mask on yourself before you put it on someone more vulnerable.”
Many people who have friends with newly diagnosed kiddos, often ask if I can be there as a support. Some turn to or find parent support groups. These can be vital resources for caregivers and their children with special needs. Many exist on social media and provide medical, legal, educational, and referral advice. Others are community based and offer everything from teen gatherings (pre-COVID) to parent yoga classes online. (Yay, MOCHA)
I suggest if a parent group doesn’t fit your style, don’t give up. You might need to change or move to another phase before they work. If you are in a stage like Anger/Self Pity and you hang out with parents who are already at ease with their kids and diagnosis, you might not resonate as these aren’t groups where they are interested in angst-ridden diatribes or woe-is-me type of presence. They will likely be upbeat, talk about how great (not difficult) your kiddo is and have a generally positive take and sage advice. This is good for you.
When I see a mom’s online post about anything from bad science to Facebook Live of their child’s challenging behavior while they talk about how depressed they are, I fight the urge to not angrily confront them about their exploitation of their kid. But then I remember when I was at that stage (Thankfully social media wasn’t a thing back then.) and I remember in my body how I felt similarly. No, instead of anger, after a few breaths, I realize that my best response is compassion. Those behaviors, often like their children’s, are there because they aren’t aware of other choices or are not getting their needs met. We are all so much more similar than we’d like to imagine.