I have a strong affinity for Cliff Hanger from the PBS cartoon, Between the Lions. He's resourceful, but he's always left on the edge of that cliff.
I’m tired. Specifically, I’m tired of Asperger’s.
I don’t hate it or my son who has it. I’m not angry at the brain he has, that brilliant brain that thinks in completely different ways than my neurotypical brain. I’m not out to “fix” him or “cure” him. He’s not broken or sick. His Asperger’s is part of who he is as much as his grey/green/blue eyes and his love of all things cat-related.
But I am exceptionally tired. Tired of the explosions rocking our world. Tired of walking on eggshells, wondering if this time he’ll accept my “no” with a head tilt and relaxed, “Okay,” or whether he’ll erupt into a tantrum of Vesuvius proportions. Tired of guessing how he’s understanding what he’s hearing and seeing, knowing it isn’t how I see or understand and and that he often forgets just how differently he perceives the world, at least differently than his brother and I do. Tired of hearing myself yell when I can’t take it anymore. Tired of crying when I hate that I yelled at my kid, my kid with Asperger’s.
He’s tired, too. He’s tired of traveling and returning home and all the routine-breaking that goes with that. He likes the places we’ve gone, the family we’ve seen. He liked Stunt Camp, even though he was teased by one of the other kids. He really liked SUUSI, the Southeastern Unitarian Universalist Summer Institute (read: giant UU church camp) we attended in July, a place he marveled at, summing it up in one tear-jerking statement, “I like it here. No one teases me here.”
Like these trips and visits or not, the transitions torture him. And when he’s tortured, so am I. Yeah, I’m the mom. I should be able to weather his storms time and again, always staying calm (since that works better with almost every person when they’re upset) and sane (as that works better for dealing with life in general). I should not yell, not scream, not threaten with school, not slam my door and cry in frustration over the moment, in fear of his future, in sorrow for mistakes of the past, in anxiety about keeping the three of us in one piece emotionally while he pounds on my door again, yelling to be heard again. Yelling, pounding, crying in frustration, crying in fear, sorrow, and anxiety.
It’s messy that way, at least for me, parenting a child with Asperger’s with a large dose of anxiety and a dash of ADHD on the side.
There’s plenty of frustration, fear, sorrow, and anxiety all around. There’s also anger, anger that’s usually anxiety turned sideways, fear turned upside down, and sorrow turned inside out. Anger is his default emotion, since the others are often just not accessable or expressable or something. The others just seem lost in translation, with only anger surfacing. The anger wears me out. His and mine.
I’m desperate for another emotion from him. Occasionally, he’ll talk about being afraid: afraid of his room, the backyard, the front yard, some math problems, new piano pieces, and countless other places and conditions that he hasn’t yet expressed or can’t name. He just assumes I know what he fears, how he feels, what he knows.
But of course I don’t know. While it may not be true of all on the spectrum, a lack of Theory of Mind is part of Bryce’s Aspergers. He has a terrible time seeing from another’s point of view, at least in real life. He’ll admit it freely and has even volunteered is challenge when flustered. Sure, offer him a hypothetical Theory of Mind test, and he’ll give the right answer. He has enough logic skills to do that. In real time, with emotions running high, it’s a different story.
Worse yet, he struggles to interpret his own internal milieu. Thanks to lots of conversation between the two of us and some time with a fine therapist, he’s more often able to label at least his anxiety and sometimes communicate it. He still generally screams it in anger, but screaming,”I’m really anxious about this math problem,” mid-meltdown at least gives me a bit more information than his usual rants. And, if I’m not too far over the edge (lately, I tend to be hanging by a fingernail), that bit of information gets through and allows me to reframe the situation and change my (highly ineffective) all too-frequent response of yelling back.
So I’m tired. Perhaps not so much of his Asperger’s itself, but of hanging onto this cliff during this siege of meltdowns. Emotional regulation required emotion recognition, and that’s still in early stages for him. Somehow or other, we’ll find a way up, and I’ll come off the cliff and stand on solid ground again. Somehow.
I am feeling this way exactly today. We are new to the world of Aspergers, as my son was just diagnosed in June. So I am also tired of maneuvering around the world of insurance companies, therapists, and scheduling nightmares. I am tired. Thank you for putting it into words and sharing so beautifully.
Kim, that sounds exhausting. Overall, I was relieved with the diagnosis last November. It explained so much and gave me a direction in which to focus my energy and resources. He’s taken some steps back lately, reminding me of last fall, and it’s nerve-wracking. Guess I wanted consistent forward progress and my effort to always pay off in his responses. Doesn’t work that way. Ouch.
Good luck to the world of Aspergers!
Sarah
You deserve a vacation!
I understand why you are tired. Is your son in therapy?
I agree, Amy. I have two days off this weekend. Now and then divorced parenting pays off, but I’d hardly advise it as the sane route to parenting kids with special needs.
He spent about 6 months in therapy with a fine psychologist (actually, we went together). He fell into habitual responses and patterns, however, as he tends to, and while some good came out of that time, we all decided to take a break. He’s been in a social skills group since then, but that’s not challenging him as hoped, so we’re stopping that. His therapist is adding a new staff member — a psychologist/behaviorist who will do home visits — who may be a good match. We’ll see if this is doable. He sees psychiatry regularly, and it looks like a bit more med tweaking may be in order.
Sarah
I really think any challenging kid with Asperger’s needs to be in therapy on an ongoing basis throughout childhood and adolescence. The traits of ASD can be variously challenging at different ways during different phases of development. To me that’s more the core foundational step than medication. Therapy can be more difficult to gain cooperation with during the teen years so I think it is good to establish it as a given earlier on.
Best of luck.
Therapy requires a degree of cooperation that we didn’t have toward the end. I agree it is a crucial part of the solution, but it only makes sense to do it when it’s productive. OT, PT, social skills groups, psychiatry appts, SP, psychologist appts — there are many roads. Some work better at some times, while some are best for others. Time, money, and energy prohibit it all from occurring at once.
Without the meds my son is currently taking, therapy could not occur (we tried, and with more than one therapist). Initiation of a low dose of SSRI made initial therapy useful. I’ll likely post about meds sometimes, but it is a charged area, and I’m in no shape to take what some folks dish out about it.
Thanks for your thoughts.
I identify with the yelling. I know it’s not the right thing to do in any situation, but I’m literally at my wit’s end. Sometimes it feels like I either yell, or I’m going to kill the kid. Raising a kid with Asperger’s sucks. Hang in there, mama!
-Taryn
Yelling does happen, although I continue to work on more effective ways of parenting and of keeping my sanity. Parenting a child on the spectrum is indeed challenging. With my son’s tantrums less of an issue now, I’ve had more chances to appreciate the fascinating way his mind works. In many, many ways, his Aspie mind absolutely rocks, and I know he’d not be him without it.
Hang on. It can get easier!
Sarah
You put into words what I’m sure so many of us feel on a daily basis I know I do……thank you. Navigating the maze of services, trying to balance work, family, home, and a child with special needs is a challenge. Some days I could just scream, but then at the least expected moment my Aspie son will come to me, and say I need a hug. I try to think of those moments when I’m hanging from a thread. Thanks for sharing your thoughts and feelings.
Heather
Aspergers is challenge for a praent as well as a child. As a praent, you are never sure that your child will be safe even after he long reaches adulthood and has graduated from college. On the positive side, they are honest, work hard, and are very dependable in their field of expertise. While my son may not be perfect in the many people’s eyes, he is the perfect son for me.
i just found your blog through googling asperger’s and homeschooling. i just started homeschooling my first grade son this year. He was diagnosed with asperger’s last year although we have known for a long time before that he was not quite typical. i found such a sense of comfort from this entry. i have been exhausted emotionally the past few weeks trying to muddle through the world of asperger’s. my son, like yours, expresses all of his emotions through the lens of anger. he also struggles with crippling anxiety. i have described life with calvary as a constant hostage situation. i am constantly trying to talk him down, save the innocent bystanders, and understand his conditions. thank you for sharing. there is something so comforting in knowing that i am not alone in all of this.
Oh, thank God. I found your blog by googling “I yelled at my Asperger’s child” because I felt so guilty and crappy and horrid for yelling at my kid while he was mid-meltdown tonight. Reading your entry and the comments after it helped me realize that, like you, I am tired (and human). I still feel guilty, but I don’t feel alone. Bless you as you travel the Asperger’s road!