Posts tagged ‘stages of grief’
I worked on a research paper with my favorite professor in college. Part of our hypothesis was that behavior doesn’t change language. After showing that no matter how integrated Spanish-speaking people became in American culture, their ties to their native language did not change, I became a believer in the idea that language changes behavior as opposed to the other way around. While I wouldn’t go as far as saying the book The Secret is truth and gospel, I do believe there is much power in the thoughts and words we chose to believe and use.
That probably explains my attempts to constantly see the upside for everything going on in our lives. Husband getting downsized last spring? The initial freak-out was replaced by the thought that it was an opportunity for him to find the perfect job, since the other one was clearly not. C getting picked on at school? He will grow up to be a much more sensitive person. My own health going off the deep end? It’s an opportunity to really change the course of how I will feel in 20 years and take stock in both my physical and emotional well-being.
However, to be totally honest, there are huge gaps of simple, utter frustration and stress. While I think we’ve certainly accepted what is with C and actually take quite a bit of joy in the things his diagnosis brings both him and us, it does take its toll. Some days, within 15 minutes of his being home from school I’m ready to jump out the proverbial window, despite living in a one-story house. I wonder if I have the patience or stamina to give this child what he needs, because I often think what he needs is so much bigger than what I can give him. And sometimes that frankly just sucks. Raising a child with a diagnosis is hard, and it’s a lot of work. It takes its toll on me as a parent, and no matter how much I love C just the way he is, I can’t stop the gray hair from coming, my heart from being weary, and my head from sometimes craving an escape to somewhere, anywhere, but here.
I’ve written a lot in the past about the stages of grief when dealing with a diagnosis of any sort for a child. Having experienced both medical traumas along with the developmental challenges, I can say the medical traumas were more immediate and frightening while the developmental ones still sometimes keep me up at night.
However, I suspect for a lot of us, there comes a time when we pass through something akin to acceptance. There are frequent blips back to denial and anger smattered in there, but for me, I’m mostly hanging out in the land of “what is” these days. It’s not that I’ve given up and stopped trying to give C the tools to make his path in life that much easier, but I think all parents do that. And it’s not that I think there’s nothing left we can do to make C healthy and happy. We’re doing that too.
I suppose I’ve just settled into being a parent, and a parent to this child in particular. I remember once talking to the parent of an adult child with autism, and she (so haughtily, it seemed to me) smiled knowingly when I told her about doing hab work and supplements and a zillion therapies. “Oh yes,” she said, “I remember those days. You’re still in that period of frantically trying to do everything you can thinking your time is running out.”
I was moderately offended, even after I realized she was right. I didn’t really need to hear it at the time, and if I could have the conversation to do again, I’d remind her that at one point she was in the same place I was. We all go through that; the initial stage of late nights, plugging in every keyword from the neurologist’s report into google trying to find something that will explain what is happening. I’ve been through the constant therapy appointments, driving six hours round trip once a week over two major mountain passes simply for feeding therapy. Couple that with OT, PT, ST and hab, and we had a full load for awhile.
Now I’m sort of between the Mom who seemed so condescending and the Mom I used to be. Somehow, where I am now is not quite so frantic. So harried. So wearing. There are still days that seem like they will never end, and there are still tears of frustration at times. But for the most part, there is more calm. I’m not googling all the time. I put on jewelry and sometimes even make-up. The all day sweats and ponytails, while still present sometimes, are mostly behind me. I even have some friends that have nothing to do with special needs kids. And sometimes, we don’t even talk about our kids at all.
Just like our spectrum kids, I don’t suppose all of us parents have landed in the same place on the continuum. I hope when I get to the place that Mom before me was, I’ll remember what it was like to be in the thick of things with my kid and be empathetic to those in the trenches. But I’d also like to tell the parents coming up behind me that they’ll get here too, eventually. Maybe not at the same time or place that I did, but the peace will come. I promise.
Fixing or curing C’s autism has never been on my radar screen. His health and happiness are all that’s important to me, and in helping his health, his autism has taken some hits along the way. I’ve wished away the challenges autism has made him face, although I also see the flip side of his becoming a better person for having weathered those challenges.
During a particularly difficult period a few years back, I visited a therapist who told me to get angry at the autism. I puzzled away at that for months, never coming to a resolution. How could I be angry at the autism? C is autism and autism is C just as much as he is sweet and has dimples. It’s just part of who he is, and being angry at it seems counter-intuitive to me.
However, I recently understood what it meant to be angry at autism. For once in C’s life, I found myself so angry at something that happened that I wanted it all to go away. I wanted him to be a typical kid, a kid who never would’ve been put through this. More than anything, with a fury and desire I’ve never felt before, I wanted his autism to be gone.
The feeling was gone almost as quickly as it came, but I suspect I’ll always remember where I was and what was happening when I felt it. In that moment, all I wanted was that one word that is so rightfully taboo in our world because it is such a wrong word. In that moment, I just wanted him to be normal. But then the feeling went away, and back I went to my normal, in which everything just IS.
During C’s K year, we had a terrible year and had to pull C out of one school mid-year and start another. All of us were sick constantly, and C was the worst. Too much free time spent in the bathroom at school landed him with monthly bouts of diarrhea and one trip to the ER after a night of vomiting every 10-15 minutes for 8 hours straight. It was an awful year, and it couldn’t end soon enough.
Part way through the year, I sought counsel from a therapist who didn’t do the usual, “And how does that make you feel?” Instead, it was more of a dialogue between us, with Barbe showing her understanding by saying, “Well of course you are depressed, who wouldn’t be?” I needed a break, I needed to focus on myself for awhile, and frankly, I needed some help. She proved the answer to all three of those things.
One thing Barbe asked me to do was make a list of how I could get out of my current situation. What could I do to make it better? As I listened to her describe the exercise, my mind was swimming with possibilities. The list would be pages long, I thought. However, when I sat down to write it out, I only came up with three. The first, completely unreasonable, was “Write and publish a book, make a zillion dollars and hire a nanny.” It was completely unreasonable to me because I couldn’t imagine anyone else picking up C from school. How could I justify giving away precious hours in the day to someone else? I’m his Mom, and he needs me. And I need him.
The second, which we’ve done, was “move back to family.” Back near willing and able grandparents has proven key in our escaping occasionally for brief respites. Ga and Pa take C to therapy appointments sometimes, and have him spend the night every once in awhile. It’s never enough (could they just move in???), and they do have busy lives of their own, but every little bit helps.
The third and most powerful idea has been the one that dances through my mind continuously. I have been on various paths through accepting what is while not giving up on helping C be the best and happiest C he can be. I’ve never thought accepting meant giving in or giving up, but I’ve come to a better peace and understanding about what is since writing the answers to that question. The last answer to the question of how to get out of my situation? “Get okay with being in.”
I’ll never accept this. I’ll always accept my child for who and what he is, but as long as there is hope, I will never, ever quit for him. We are continually looking for new ways to help C break through the barriers in his brain and body, and I doubt I’ll ever give up the search. With each new step, be it therapeutic or medical in nature, we find something or someone that helps, and it often comes in forms we don’t expect.
There are some moments when I feel like I’m beating my head against a wall, but they always pass. When I’m at my lowest, C does something that amazes me in its power to bring back the faith. So no, I’ll never accept this for him. It makes him who he is and I completely accept him for who he is but I will continue in my quest to find ways to make his journey through this world happier, healthier, and safer. So I suppose I’ve failed the acceptance portion of the stages of grief, but that’s okay by me.
Back to the stages of grief….
Last year was terrible as we lived far away from family, we were all sick constantly, C had a horrible school situation, and we couldn’t find therapists. I was stressed to my limit, and finally broke down and saw a psychotherapist myself. When I told her I thought I was depressed, she laughed and said “Of course you are depressed – I’d be worried about you if you weren’t!” What a relief to come across someone who thought this was absolutely normal given the situation. I had never thought about it in that way, and wondered if perhaps I was overreacting. Having someone objective acknowledge the stress of what we’ve been through gave me the strength to start moving beyond it.
I still struggle with bad days, and have come to realize that my bad days often coincide with C’s bad days. I try very hard not to make HIS bad days coincide with MY bad days. I know people think kids with autism don’t notice other’s feelings, but I don’t find that to always be the case. With C, it’s not that he doesn’t recognize how others are feeling sometimes, but rather he internalizes how others are feeling to such an extent that doesn’t really know how to cope. He is very reactive, and sometimes I think he has the weight of the world on his shoulders.
I’ve heard people talk about the five stages of grief in terms of dealing with a serious diagnosis for a child. You grieve for what they might have been, the loss of normalcy, the things you thought you could take for granted. I, for one, feel like I have gone through the stages of grief in varying degrees multiple times with each new issue that arises. I change from stage to stage in any given year, month, day, and even minute. From day C was born (and subsequently nearly died), we’ve been dealing with one thing after another. That’s not to say there haven’t been good days; happily, there have been many, many of those. But as each new issue started, I kept thinking “This will be it. This will be the last thing to happen.” I no longer say that to myself.
Here’s the list: respiratory distress syndrome, pneumothorax, pulmonary interstitial emphysema, pulmonary hypertension, hypotension, sepsis, apnea, bradycardia, oligihydramnios, prematurity, tracheomylacia, global developmental delays, oral motor dysfunction, failure to thrive, hypotonia, sensory integration dysfunction, reflux, reactive airway disease, asthma, left-side weakness, ankle pronation, atypical tongue grooving, toxic synovitis, ataxia, verbal apraxia, oral apraxia, plagiocephaly, food allergies, unspecified autoimmune disease, impaired methylation abilities, yeast problems, absent glutathione production, high functioning autism, developmental coordination disorder, hyperlexia.