Posted in musings, quotes

treating autism

“The absence of effective treatments for manic-depressive illness in earlier times did not mean that these patients were not treated. They were treated with all sorts of substances and procedures from ancient times onward. It’s just that none of these treatments worked, and most were harmful.” – Walter A. Brown, Lithium (emphasis added)

When I came across this quote I thought instantly of modern treatments for autism – not the few designed to help an autistic individual learn to cope with the neurotypical world, but those that claim to cure the condition. Even the most mainstream behavioral therapy is concerning (particularly to autistic adults who endured it as a child), and desperate parents who can’t handle having an autistic child try many stranger and more dangerous “treatments.” Different restrictive or elimination diets are supposed to reduce the behavioral symptoms of autism, according to parental observations; given the oral and textural sensitivities of many autistic people, those diets are likely to become even more restricted to the point of being unbalanced, or very costly for the parents (and objective, blinded research observations show no difference). Parents may choose not to vaccinate to prevent autism, and instead create opportunities for potentially deadly preventable diseases to flourish. And one has only to read about the “bleach cure” to see how supposed cures can cross the line from unwise to abusive.

Autism may not even be curable. It’s highly unlikely a single compound will be found that renders the autistic mind essentially neurotypical, like lithium can regulate and even prevent the mood swings of bipolar disorder. And yet so many people invest so much time, energy, and money into making autistic people act like and think like neurotypical people – even when those efforts are harmful to the autistic people they claim they want to help. It’s like forcing deaf children to speak orally and lip read instead of encouraging sign language, or shaming a wheelchair user for not trying harder to stand and walk. Instead of hurting autistic children to try to mold them into conformity with some neurotypical standard they can never completely reach, support them by making the world more aware and accepting of neurodiversity. Help them develop social skills, adaptive and pragmatic skills, and language skills without trying to change the core of who they are, and learn to see each child for the unique and beautiful person that they are, needs and struggles and gifts all bundled up together.

Posted in sqt

{sqt} – seven quick thoughts from a quick week

I’m linking up with This Ain’t the Lyceum today – head over and read some more!

  1. I’ve been tapering off my antidepressants over the past month and a half (my doctor recommended trying it after a year, and I waited until warm sunny weather would give me some help), and I think it’s going well! I have noticed some old thought patterns re-emerging, but they aren’t strong and all-consuming, and I’m equipped to process them effectively thanks to therapy. I should be completely off by the end of August, and probably due to my long and slow journey away from them I’ve avoided the unpleasant symptoms one can experience when abruptly messing with one’s serotonin pathways 😉
  2. Aubade had yet another dermatology appointment this week and we finally had good news: it appears that her mysterious rash is gone for now (or at least controlled without continued daily use of heavy steroids), and her skin is healthy. We’ll keep an eye on it in case it was triggered by some allergen or environmental factor that might be an issue again next spring, but at least for now she should be comfortable and unmedicated except for moisturizing cream.
  3. In case anyone else needs allergen-free lotion, we’ve been using Vanicream and I like it a lot. It doesn’t have lanolin in it, which can apparently irritate or trigger some people, and it’s probably all completely artificial, but it has a good feel and has definitely helped Aubade’s rash of mysterious origin.
  4. In non-medical news, I got a new camera!! My old DSLR was 8.5 years old and still working great, but there have been some advances since then 🙂 and it is nice to have the added pixels in the sensor especially in low-light settings. The boys have even posed for a me a few times (or at least, smiled at the camera and then asked to see themselves).IMG_0174
  5. It has been hot here, and humid since we’re in between waves of the monsoon, but we have to get out of the house so we’ve been playing a lot out back with the hose. We’ve rigged things so the hose will spray on the slides and the large wading pool will tuck underneath the slides, so the boys can go up and down the slides endlessly to much splashing underneath the mist.
  6. I’m attempting to babysit two little girls from church a few days a week, Limerick and Aubade’s ages; we had our first afternoon together this week and it went so well (despite my bone-crushing anxiety the night before)! All five kids played together well, in kind of a parallel play sort of way, and there was only one instance of quarreling the entire time. I’m sure it won’t always be that smooth and easy, but it was a good start, and left the boys anticipating the next playdate rather than dreading it. From the other mom’s perspective, it’s a chance for her to work and pay off debt; from my perspective, it’s a chance for my boys to make friends and practice social skills in a low-stress environment, and an opportunity for me to contribute monetarily a bit more to the household. Maybe I wouldn’t care about that so much if I were an excellent homemaker… but I’m really not 😛 In fact it’s tempting to use some of the extra income to pay someone to clean the house every other week or so…
  7. We qualified for ESA funds for Rondel for the year! In Arizona, if a “special needs” student (one who would have an IEP) isn’t enrolled in a public school, they are eligible for a certain amount of money to use for curriculum and therapeutic services. Since we’re homeschooling, we can use some of it for some good books and manipulatives, and since health insurance can be finicky about approving therapy, we can also use it for his speech therapy. It’s not a huge sum of money, but it’s enough to be very helpful with things. The eligibility criteria are very specific, but if you meet them the application process is very simple and straightforward, so I would encourage any homeschooler in Arizona with a developmentally delayed child to look into it.

How has your week been? What do you do to cope with the summer heat? What resources have you found in your state/country to support the needs of differently wired students, especially outside the public education system?

therapy

Post-therapy I feel as I imagine Harry felt after one of Snape’s occlumency lessons… I’m sure it’s helpful in the long but it’s not comfortable or easy on the mind in the moment! At least my therapist is friendlier than Snape 😛

Posted in musings

avoidance-based parenting

I wonder if we all parent the way we do in response to our own internal demons.

The mother who feels lonely and insecure, who desires above all to feel a sense of connection and belonging – maybe she is the mom attracted to attachment parenting, because she hopes to give her baby the feelings of security and unconditional love she longs for herself.

The father who always felt distant from his own parents, who never had a listening ear for his stories and ideas – maybe he is the the dad who gets excited about his children’s hobbies and learns enough about them to engage in meaningful discussion about their activities and interests.

The mother who is constantly driven by shame and perfectionism, who tends toward depression and feelings of inadequacy – maybe she is the mother who parents permissively, attempting to free her children from the heavy emotional burdens she carries.

The father who grew up in an unpredictable and sometimes violent environment, for whom love was an unstable things – maybe he is the father who disciplines his own children harshly to try to maintain the control and order he needs to keep his own painful childhood memories from being triggered.

Probably many people, from both healthy and broken childhoods, parent well through common sense or the mentoring aid of more experienced friends. I don’t really think that we all choose our parenting methods (at least in part) through some desire to avoid passing down our own problems! But it is a struggle for me.

What I am realizing, though, is that it isn’t enough to parent out of an avoidance or fear, any more than it is enough to build one’s own self that way. My therapist showed me the importance of creating a positive image to move towards in my own personal development, and maybe that would be a beneficial exercise in parenting as well. What kind of parent do I truly desire to be? What atmosphere and attitudes do I want to cultivate in my heart and home? What qualities do I want to characterize my interactions with my children?

Not only will answering those questions give me a more defined vision than simply parenting in hopes that my children will not be depressive perfectionists because of me, but it will also give me freedom from the vague feelings of inadequacy and shame that come from never being sure of the goal I’m aiming for. And that can only have good effects on both my life and my parenting!

In the next few weeks, I’m going to try to come up with a positive description of how I want to parent, and if I can I’ll share it here! I may even do a link-up party if anyone else is interested in writing about the topic – just comment here to let me know!

Posted in musings

bike thefts and mindfulness

Remember how excited I was about biking in my {SQT} post on Friday? Well… it’s a good thing I’d written that post the night before, because when I went out to the garage that morning both my bike and my husband’s bike were gone. Beautiful brand-new bike (first new bike I’d bought since I was in junior high), stolen. I took the car instead that morning, and worked on cognitive-behavioral techniques about it all day (because sadness triggers a lot of unhelpful thought patterns for me), and prayed about the best way to move forward, and just generally felt sad and disappointed and hurt all day long. It wasn’t just a bike that was stolen: it was my quiet time with God, my exercise time, my outdoor alone time, my time of refreshment and empowerment, that was taken away. And I didn’t know if it would be financially wise to buy another bike when we apparently live in a high-risk area.

But what I did know was that I didn’t want my (very legitimate) sadness to prevent me from experiencing the happiness of all the good things that were just as much a part of my life as the bike theft. Driving home, I thought about how the kids were waiting for me, how they would be excited to see me, and want me to play with them, and fill the house with silly games and wild stories and sweet cuddles – and how my sadness could interfere with my ability to connect with and cherish them, or keep me from feeling the joy of their laughter and craziness. Was I going to let this unknown thief steal the happiness I have with my children? No I was not! It is ok to be sad, I told myself, but right now, in this moment, I am going to seize the joy and beauty and love that presents itself, and let the sadness wait until a time when I can listen to it and determine how to address the practical issues the theft created. The bike was stolen in the past; the commuting will take place in the future; but my children are with me now, offering up their little happinesses, desiring my love and happiness in return. And I can choose what I am going to open my heart up to in this now, this present moment. (Oho! Look at that! It’s my 2017 word of the year!)

One of the things I’ve learned from my therapist is that it’s extremely pointless to try to make a thought or emotion go away. The more one fights it, the bigger and stronger it gets. Choosing to open oneself up to a new thought or emotion, however (a more helpful alternative), allows the unhelpful thought or emotion to slip away, or at least shrink into the back reaches of the mind. So that’s what I tried to do with my sadness and disappointment, by fully living in the present moment so characterized by the happiness (and neediness 😛 ) of my children.

(And in the end, we found two cheap old bikes on Craigslist that will work for now and not be quite as appealing to thieves – or quite as much of a loss if they are stolen! I still miss my bike, but at least I don’t also have to miss biking itself.)

Posted in family life, musings

therapy as playground ladders

On Monday, I took the kids to a park near our house and let Aubade sleep in the stroller while the boys and I played on the playground. It was a challenging playground, a bit above their skill level, and it was fascinating to watch them attempt the various ladders, steps, and climbing walls. They would climb up as high as they were comfortable, then climb back down, then come back and repeat the process, over and over again, until they finally made it to the top – and then they would climb it still more times, until that piece of equipment was no longer a daunting challenge but a mastered skill.

I’ve noticed the same things when the boys are building Duplos, or drawing, or various other activities – if they have a goal in mind, they don’t want to stop trying until they’ve attained it, and once they’ve attained it they’ll repeat it countless times until it is so easy and familiar that they lose interest and move on. (Right now, for example, our home is filled with large 3’s made out of Duplos… it was 8’s for a few weeks but those are no longer challenging for them to build.)

Seeing that drive for mastery and motivation to persevere has made a big impression on me. The boys aspire for perfection in the sense of having a goal and working towards full accomplishment of that goal, but they are more than ready to fail countless times along the path towards their goal. Each failure, each unsuccessful attempt, is seen as a part of the learning process rather than as a setback or a sign of inadequacy – which is radically different from the way I, as a dyed-in-the-wool perfectionist, tend to view my own failures, but much healthier and more rational! So as I struggle with the techniques my therapist has given me, to retrain my brain into more positive habits of thought, I am going to try to keep those playground ladders in my mind: as I climb toward joy, it’s going to be hard, and I might get scared, and I will probably have to come back down and start over a few times – but that’s no reason to give up! Every attempt will make me stronger and bring me closer to mastery of the skills I desire, and maybe someday I’ll be running up from my depressive triggers just like those boys were scampering up rope ladders and rock walls by the end.

Posted in musings

presence and PPD

Back in January I decided that my word for 2017 would be “presence”, with the goal of being more present with my family, community, church, and job, instead of being disconnected or lost in daydreams. It’s not that I think daydreams or introversion are a bad thing – I just don’t want to regret the time I wasted or the things I did half-heartedly because I was distracted with meaningless things. And so I did my best, through the worst of my PPD, to be present with my family. When I could barely make myself get out of bed, I would try to play games and read books in the bedroom. I would try to fill the days with fun activities to keep us going so that the depression and anxiety wouldn’t drag me down and away from them. But I still felt so disconnected, so far away from them and from our life together. I spent hours reading just to escape my emotions, and in the process isolated myself from the people around me. I would watch my children laughing without feeling any corresponding happiness; I would sit with Aubade smiling at me and ache with heart-wrenching sadness. Look at these children, so happy and beautiful, the depression whispered, and look at you, so miserable, so unable to laugh and play with them and appreciate their silliness.

Getting an official diagnosis and some outside, objective perspective helped me see that this inability to feel present was not a moral failing or a character flaw, but a symptom of a disease, and that in itself was encouraging and reassuring; it didn’t solve the problem, but it gave me more strength to fight it. It was a shield against the barbed lies that are, for me, a hallmark of the experience of depression. And at each step, as I sought help and as the depression tried to convince me not to ask for help – that the risks of vulnerability or the potential of getting a bad therapist or the side effects of medication were too great – it was my goal of presence that kept pushing me forward. Because I could tell that I was not capable of being fully present in that state, and because I wanted to be fully present, I knew that I needed something to change.

I never thought that I would take an antidepressant. Those are for weak people, the depression had always told me, and I don’t really like the idea of taking a daily pill (I’m still slightly resentful of my daily thyroid hormone replacement, to be honest, to the point where I once tried going off it cold turkey to see if I’d be ok without it… let’s just say that wasn’t the best idea I’ve ever had). And yet, for this past week when I’ve been taking it, I’ve had more internal peace and happiness than I’ve had for a long time. I’ve watched my baby sleeping or cooing up at me and been filled with deep, deep love instead of the ache of inconsolable sadness; I’ve sat with my boys at the table and laughed at their silly antics instead of ignoring or snapping at them. I’ve planned and cooked healthy meals and cleaned up the kitchen every night, and helped my husband with the laundry, and packed diaper bags and taken the kids out without feeling scared or overwhelmed. I feel like I’m living my life again, instead of just observing it through a dim and melancholy glass: I am present. I hope it lasts but I’m not going to waste time worrying about that; I’m going to enjoy this while I can.