All posts by Tanya Savko

Siblings without Rivalry

sibs april 2017

When we were growing up we had a 1978 Chevy Impala station wagon. It was pale yellow, huge, had rear wheel drive, and felt like sailing a boat over the road. We – my parents, brother, two sisters, and I – took many family road trips in it across the western United States. Those of us riding in the “way back” (the third row seat that faced backwards) often got carsick. There was no official nickname for the car, but I called it The Beast. I think at some point we all learned to drive in it. It was one of the first things, aside from going to church every Sunday and having the same wacky parents, that my siblings and I all experienced together.

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I am the eldest of four children raised in a strict (yes, Mom, it was) Catholic home. My brother is two years younger than I am, and my sisters are eight and ten years younger. I helped take care of them when they were little – changed their diapers, rocked them, carried them around like baby dolls.

When I was fourteen, something happened on our mom’s side of the family. We didn’t understand it (in fact I don’t think we do even now), but ultimately our mom and our aunt stopped communicating, and we couldn’t see our four cousins anymore. It was a very sad thing, and I don’t even recall how it was explained to us then. Our mom taught us to love and care for each other. But that family rift, which lasted over two decades, taught us, perhaps subconsciously: We didn’t ever want that to happen to us.

Fast forward to my late twenties: By then my sisters were away at college, I was a single mom of two little boys, our brother lived 700 miles away, and we would all email each other and talk about our very different lives. One sister was studying forestry and living abroad in Mexico, the other one was studying sociology and video production in Portland, Oregon. I had recently gone through a painful divorce and both of my sons had special needs. My brother was living in Los Angeles sharing an apartment with our dad (our parents divorced at the same time I did). There was no texting (and I don’t think any of us had cell phones yet), so email was a good way to keep in touch. I printed and saved a lot of them.

Throughout our adulthood it’s unfortunately seldom that all four of us can be together at once, and we treasure those times. At some point we discovered that we all love wine and travel (probably because of spending many summer vacations in The Beast). Some of our favorite reunions involve wine tasting and talking about our latest trips. Two of us live in southern Oregon and the other two in Los Angeles. We get together whenever we can – baby showers, river rafting trips, graduations, weddings, our mother’s 60th birthday, and our father’s funeral. Good and bad, we are there for each other.

We all went down our own paths as far as religion and politics are concerned; somehow those issues usually don’t come up the few times we’re able to visit. We not only respect our differences (including careers and personalities), we embrace them because they are part of these individuals we love and cherish and couldn’t imagine not having in our lives. There is no passive-aggressive communication, no jealousy, no disparaging remarks. We might laugh a little about our shortcomings, or in mild exasperation – and concern – wonder why someone isn’t doing what we would do if we were in that situation. But from that sad family rift we learned to appreciate each other for who we are and to hold on no matter what.

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Our father’s funeral was six years ago, and our mother and aunt both attended. At one point our aunt approached her and I don’t know what was said, but a moment later they were embracing and crying. I choked back a sob as I realized that through his death our father had reunited our family. We see our aunt, uncle, and cousins as often as we can, making up for lost time. And our mom and her sister have never been closer.

Awareness Revisited

Awareness-Road-Sign silenttruth.co.uk

Nigel had been saving up for a new video camera and was finally ready to buy it. Every week he sets aside money so he can buy Amazon gift cards, and then he can order items online that way, since he doesn’t have a debit card (we’re working on that). I brought $250.00 in cash when I picked him up, and we went to the store to get the Amazon card. He picked out the kind that you can choose how much you want on it, and we walked up to the cash register. The cashier looked tired and flustered, and I could feel the impatience vibe emanating from her as Nigel struggled to find the words to complete the transaction.

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Most Aprils since 2008 (the year I started blogging) I have written a post about Autism Awareness Month. I’ve taken different approaches – one year I posted a bunch of resources, another year I wrote about an experience I had while I was the local chapter rep for the Autism Society of Oregon. I wrote about the first time we were able to eat in a restaurant without wailing and writhing on the floor. And a few years ago I wrote about awareness in action – in our apartment complex.

This year marks 20 years since autism has been a part of our family’s everyday awareness. There have been years when we wore T-shirts and put bumper stickers and magnets on our car. There was the year that I bought a blue lightbulb to put in my front porch light for the month of April. (I’m sure all that accomplished was the neighbors thinking I was being artsy – why would they make the leap that a blue light symbolizes autism awareness? I certainly didn’t have time to explain it to everyone who drove by.) And there were the years long before we had heard of Autism Awareness Month and did nothing to promote awareness other than going into sensory overload at the grocery store, or a restaurant, or pretty much anywhere. Back then no one thought of giving him noise-cancelling headphones; if we had, most likely he would have been fearful of them.

These days, it takes a great deal to send him into sensory overload, and if the possibility exists that it might happen, he brings ear plugs with him. I still blog about autism, but not as much. I tend to leave the awareness creating to the media, who have really taken the helm in recent years. Not sure if that’s a good thing or not.

Regardless, I firmly believe the best method of gaining autism awareness is knowing someone who has autism. And in the last several years, there’s been a much greater chance for that to occur. Knowing an autistic person, or knowing of one, used to be a six-degrees-of-separation thing, but it’s now probably no more than two degrees. Your grandson. Your coworker’s sister. Your neighbor. A guy in the checkout line at the grocery store. You don’t have to know it’s autism. All you have to know is when and how to be patient. The awareness will come.

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“How much on the card?” she demanded after a few seconds, exasperated. In his halting voice Nigel managed to stammer the amount. She would never know how difficult that was for him (being rushed through a verbal exchange). I gently, quietly prompted, “Go ahead and hand her the money now.” And then the vibe changed. The awareness kicked in. Her voice – her whole demeanor – transformed. For the rest of the transaction she was patient without being patronizing. She thanked him and wished him a good day. Maybe even smiled. Score one for autism awareness.

The Most Important Things I’ve Learned

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There was the typical amount of squabbling in any big-sister/little-brother relationship. Most of the time we were close; occasionally somebody did something to somebody else and somebody else threatened to tell on somebody. At one point, around ages 5 and 7, an egregious deed was brought to the attention of our father, who was most likely preoccupied with recording himself chanting in Old Church Slavonic. Disturbed and irritated at the interruption, he still managed to give us a quick life lesson. In an exasperated tone he said, “If someone tells you that you’ve wronged them in some way, you need to say, ‘I’m in the wrong. I’m sorry.’” That was all we remembered of the concise lecture. But learning the value of a sincere apology has stayed with us throughout our lives.

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Most people can’t put their finger on the one most important thing they’ve learned in their lives. I think that’s because there are different things at different points in our lives that are equally important: learning to read, learning to cook, learning to drive, for example. The most important things you’ve learned don’t have to be profound, and they can be viewed different ways without decreasing their value: to do (swim), to be (courageous), to think (I can do this).

Some of the things that top my list: to keep trying (but know how to let go when it’s time), to apologize sincerely, to forgive, to be grateful for everything (good or bad), to never take my loved ones for granted, to not let an opportunity pass me by. And something else I’ve learned that might not stand out for others: self-awareness. When I might be going manic, I’ve learned that if I notice the symptoms early on I can take some emergency medication to halt the process, to keep myself from feeling the relentless, agonizing churning and saying or doing things I might regret. This self-awareness is not an innate characteristic I’ve had; it’s one of the most important things I’ve learned.

Life is about the choices you make. That’s another big lesson I’ve learned in life, and one that I’ve tried to teach my boys. But unfortunately I think it’s one of those things you have to learn by doing, by making the not-so-good choices that bring about this realization. That’s why it’s a lesson, and often hard-won. Perhaps the most important things we learn in life are those that change the course of it – or help us get through it.

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At age 14, three days after seeing his newborn cousin for the first time, my autistic son asked:

“How old will he be when he learns to laugh?”

Random Bipolar Musings, Part 1

minion eye roll

I figured it would be a good project – asking those closest to me how it was and is for them having a wife/mom/daughter/sister/friend with bipolar. What’s challenging? What’s strange? Anything interesting? Anything good? Or not really?

The project – a series of blog posts interviewing my family members – never went anywhere, and I abandoned it. I suppose it’s not an easy thing to tell someone you love what about them you don’t like, what irritates you, what makes you roll your eyes or grate your teeth. How they make you feel bad when they’re manic and their conversational filters are completely off and they say insensitive things. But you try to be understanding, and you’re glad it doesn’t happen very often. And you’re glad they’re aware of it and take their meds religiously. At least there’s that.

Supposedly we (bipolarians?) are a creative lot, but that may be the only across-the-board positive quality. I know I have other positive qualities, but just saying. We’re all different. Some bipolarians are downright assholes. And their family members might feel that way about them too.

It was unrealistic (and probably unfair) of me to think that people would feel comfortable talking about what my disorder means to them, how it affects or has affected their lives. These are their personal thoughts, memories, and feelings, and they have a right to them. They have a right to keep them private. But it makes me wonder – what would they not want to say? And would I want to hear it?

At least no one has to pull me aside to talk to me about my hygiene (yet, anyway). My 22-year-old son who has autism, bipolar, and epilepsy puts off taking showers as long as he possibly can. I went to have dinner with him as I do once a week and gently, diplomatically had to let him know that he didn’t smell good and needed to shower more frequently. A) He says no one else says he smells, so he must not. B) He says he has better things to do.

Don’t we all?

Why We Must Presume Competence

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My son Nigel has long referred to his autism as his “difference.” If someone he knows is nice to him, he’ll say, “She understands my difference.”

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Earlier this year I accompanied Nigel to his annual Individual Service Plan meeting with his service coordinator. We’ve been to this building several times before for other meetings, so he was quite familiar with it. The agency’s mission statement is posted on the wall inside: “…to assist adult persons with Intellectual and Developmental Disabilities and their families to create and direct their own services in an atmosphere of dignity and respect.” I love their philosophy – very person centered and supportive.

But as we sat there in the lobby waiting for the service coordinator, Nigel said, “Why can’t it say ‘Developmental Difficulties’ instead of ‘Developmental Disabilities’? It makes it sound like I can’t do anything.”

I told him he was absolutely right. It should be Developmental Difficulties.

There would be, unfortunately, the notion that if it’s just a “difficulty” fewer supports and services would need to be in place, and less funds would need to be spent. It’s so easy to lose sight of the fact that the person is doing well because of the supports and services, and if you take those away the ability to function successfully, to experience some autonomy and have a higher quality of life, is considerably decreased.

But with the supports and services in place, it’s amazing how much a person with Developmental Difficulties can achieve. Right now Nigel is starting a program called Job Discovery. It’s managed by Living Opportunities, the organization that also enables Nigel to successfully live in his own apartment due to support staff who check in with him daily (read here for more about his experience with this program).

His Job Discovery coach takes him to different businesses in the community who employ individuals with Developmental Difficulties (and anyone else, for that matter), and he meets with managers there to determine if the job would be a good fit for him and if he would enjoy it. So far he has checked out a pet store and a TV station (yes – perfect for someone interested in a film career!) and will look at a restaurant. He gets a few days to shadow someone and “test drive” the job before being hired, and will make the same wage as anyone else would in that position.

It used to be that programs like these (Job Discovery and Supported Living) did not exist for people with developmental disabilities because we assumed it would be a waste of time and funding – they could work in sheltered workshops (at much lower wages) and live in group homes (if they couldn’t live with their parents). This was a huge improvement over institutions, but it still did not presume competence.

So what do we mean by that? We believe that a person can do more than what we might otherwise assume, and we put supports in place to facilitate their success.

A person with Developmental Difficulties can, with support, have a job like anyone else in the community. He may, with varying levels of support, even live in his own apartment.  He or she can – and will – experience a fuller, more satisfying life, the kind we all strive for and deserve.

[Image credit: Vantage Mobility International]

Lessons Learned on a Cruise

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  1. Pace yourself with the food and alcohol intake. Seriously.
  2. The pillows are actually very comfortable.
  3. There are some really funny cruise ship comedians!
  4. Don’t pay to have internet access.
  5. You will gain a new perspective on your life.

I just got back from my first cruise and loved.every.minute.of.it. That could have something to do with the fact that it was my honeymoon, but even so. Loved it.

The endless buffet and sit-down dinners (most of the food was surprisingly good), the cocktails, the sun and the wind, the warm saltwater pool, the glass elevators going up and down seven stories, the hallway artwork, the towel animals, the balcony off our room, the soft-but-supportive pillows, the sleeping in until 10:30, the sunsets (obviously we didn’t catch the sunrises), the stand-up comedy club, the goofy piano bar, the hot stone couple’s massage, the hammocks, the quiet and relaxing adults-only deck of the ship, the underwater sea trek excursion in Grand Cayman, everything about Grand Cayman, shutting off my phone and not going online for the entire 7-day cruise.

On the afternoon of the last day, as I struggled to accept the harsh truth that I would soon be returning to reality, I took a walk by myself around the ship to look for a quiet spot in which to contemplate my life. This was perhaps a tall order for a cruise ship.

But I found a surprisingly unoccupied hammock on the adults-only deck where I listened to the wind while periodically pushing off the floor with my feet to swing myself. As I lay there, I thought about how stress-free the past week had been not having to answer phone calls and texts or look at the calendar or go online to check on things or be on Facebook. I could, if I’d wanted to, but I loved having a good solid week of wireless time.

What could I do to retain that “wireless” feeling after returning home? Being that I want to continue working in my same field (I didn’t have a flash of insight about quitting my job and living off the grid), there was nothing to be done about the phone, and I was okay with that. I don’t spend nearly as much time on it as other people. But I knew that something about my life had to change if I wanted to take some of the cruise mentality home with me.

I thought about what causes the most stress in my life and how I could alter that. I couldn’t eliminate it entirely, but I could take small steps to contain it and make it more manageable. I committed to taking those steps and thought of a simple plan of when and how to do so.

Then I thought about the second-most stressful thing in my life and did the same. And the third. I stopped there because anything more than that would create more stress. Then I dozed in the hammock for a while, hearing the warm, tropical wind and the muffled sounds of people enjoying their last day of the cruise – kids squealing on the waterslide, adults laughing in the hot tubs – all with realities to get back to.

I’ve been home two weeks now, and it was rough getting back into the swing of things. But I do feel that my contemplative hammock time will prove to be effective. I’ve enacted some of the small steps I intended to, and although nothing has really changed yet I feel somewhat relieved that I’ve done that, that I’ve followed through with my little plan. Sometimes a sense of accomplishment is a stress relief in and of itself.

And I’ll go on as many cruises as it takes to figure that out.

[Image credit: cruise ship art in the hallways of Carnival Dream]

The Journey: My Deepest Regret

aidan portland zoo

“I always felt like I was the older brother.”

“I knew I couldn’t count on you.”

“You met my physical needs but that was it.”

These are things I’ve heard over the past few months from my younger son, the one who doesn’t have a developmental disability. He turned twenty this month, and we’ve had some difficult discussions about him growing up with a special needs sibling and a full-time single parent. Prior to hearing these words, I hoped I hadn’t done as badly as I feared. I had hoped he would be okay, that he wouldn’t resent me for the areas where I had failed him.

I was wrong. I honestly did the best I could with the limited support I had. But I should have tried harder.

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I’ve heard from different sources (including a seminar I recently attended) that kids who have special needs siblings either overachieve to compensate or underachieve as perhaps a subconscious way to get their own needs met. And for those in the latter group, the worst time is supposed to be after age 18, as they’re entering adulthood. Their development seems to be in a holding pattern; they are stymied, directionless, depressed. Many of their needs weren’t met while growing up, and it affects them, more than most people realize. More than I realized.

Yes, many children have far worse childhoods, some full of abuse and trauma.  So, no, having a special needs sibling isn’t the worst that could have happened to my son. But he has a right to feel the way he does, to view the whole experience the way he did, and the need to be validated for it.

The special needs sibling? His needs were met twofold, as evidenced by how well he’s doing in adulthood (with daily support). But what about the sibling without the disability? Weren’t his needs just as special? Just as crucial to be met?

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He’s twenty, and I’m just now teaching him to drive. For whatever reason he said he didn’t want to when he was younger. But the sad truth is this: I was then, as always, preoccupied with meeting his brother’s needs. So he’s ready to learn to drive now. He needs to. And this is a need of his I can fulfill.

So help me, every day I will look for more.

[Image: Aidan, age three, at the Portland zoo] 

Things I Learned from Divorce

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Seventeen years ago this month, my divorce was finalized. I think more than anything else that’s happened in my life, all these years later, being divorced makes me feel like a failure. (The only thing that comes close is losing my house, which happened four years ago. But that’s another story.)

Typically in the western world it takes two people to want to get married, but it takes only one person to want to get divorced. And although I’m sure it’s hard enough on the person who wanted to do it, to the person on the receiving end it can be devastating. I could wax poetic about the feelings of betrayal when infidelity is involved. And when your parents are going through a divorce at the same time you are, it’s a whole different kind of miserable. You certainly can’t lean on them for support.

Even so, I thought I did everything right – I didn’t bad-mouth my ex in front of my kids. I thought we didn’t need to have child support court-ordered because my ex would send it every month and not “forget.” I tried to be friends with him after it was a done deal. I tried to be magnanimous about it, and I ended up feeling like a fool.

But you can’t get everything right. It’s divorce, after all. If everything were right, you wouldn’t be doing it in the first place. Here, then, are the Top 10 Things I Learned from Divorce:

10. Don’t think if you’re nice and civil in front of the kids they won’t know something’s wrong. They will, even if they’re little.

9. Don’t take for granted that your spouse will always be your spouse if you don’t make it a point to frequently tell him or her how much you appreciate them. They deserve the best from you.

8. Don’t assume because you look pretty good no one would ever cheat on you. Let me tell you, it’s a rude awakening.

7. Don’t beat yourself up when you realize your role in why things went downhill. It might not justify the other person’s role in the demise of your marriage, but that factor is not worth your focus. Learn from it and move on.

6. Don’t be a martyr. Ask for help, especially if you have special needs kids.

5. Do prepare your kids. If they have special needs or they’re not able to understand when you explain things verbally, tell them visually. Neither of my kids could talk at the time, one was/is autistic, and auditory processing was very difficult for both of them. I bought a book called Mom’s House, Dad’s House that had a cover with two separate (but whole) houses on it and a tree in the middle. It helped the boys visually make sense of what was happening. There was still a lot of anxiety, of course, but at least they had something to go on.

4. Do take the high road, but don’t be a doormat. Protect yourself emotionally. Value yourself.

3. Do communicate. Just because you’re not “fighting” doesn’t mean everything’s great. Be proactive.

2. Do see your spouse as the most important person in your life. Yes, even more than your kids. It’s impossible to have a great marriage without that. This is not a justification to neglect your kids and not nurture your relationship with them. Parenting is a gift and a sacred calling, and our children deserve our full presence in their lives. But you have to put your spouse first. I didn’t, and I should have. This is one of the most important things I learned from divorce.

1. Love is not all you need. It takes so much more than love to create, nurture, and sustain a good, fulfilling marriage. Love is why you do it, but it’s not always how.

The Call You Can No Longer Make

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I was six years old. A long-time friend of my father’s was visiting from the East coast, and we were returning from taking him out to dinner. It was late, and I had been dozing in the car on the way home. I woke up when we pulled into the garage, but I wanted my dad to carry me, so I continued to sit curled up on the back seat and hoped I appeared to be sleeping. At some point my father reached in the car and pulled me to him to carry me to my bed. I wanted to seem convincingly asleep, so I let my arm drop backwards over his shoulder and stick out to the side, as if I couldn’t control it. My dad’s friend, a photographer, commented on the position of my arm and said that he wanted to take a picture. Afraid of potential repercussions (slide shows with the extended family viewing the photo projected onto the living room wall), I let my arm fall back into place as my dad carried me upstairs. He rarely carried me, but I loved when he did. 

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I read an article recently that was written by a man whose father had died five years before, and I was very interested in it because as of last month my dad has been gone five years. I was searching online for opinions about how long it takes to get over the death of a loved one since I still grieve for my dad, sometimes as much as I did in the beginning of the process.

Many sources say it takes ten years, some say five. But this article, written by the man whose father had been dead for five years, says that you never “get over” the death of a loved one. Furthermore, the man (who was not a counselor or therapist, just a guy missing his dad) said, Why would we want to? Why should we want to “get over” someone who had been a huge part of our lives, who loved us unconditionally, and whose love we still feel?

“Getting over” means different things to different people. To some it means when their life will get back to some sort of normal. Others just want to know when they will stop crying every day. But I think for many of us it means when we finally make peace with the fact that they’re really gone, that we won’t wake up after having dreamt of them and think, I need to call Dad; I haven’t talked to him in a while, and then with great sadness and disappointment remember that you can’t.

And that’s what I think that guy meant by “getting over” – that those things will never stop happening. Those things are normal, and we should embrace them. Those things mean we haven’t forgotten, and that our loved ones will always be with us.

[Image credit: DaftPoster]

What We Can’t Say About Autism

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It used to be, eight years ago, parent bloggers could write – without experiencing any backlash – about the challenges of raising an autistic child. Soon, though, we were chastised for saying “autistic” – we were told to say “with autism.” We had to use person-first language, even if we could clearly see that autism affected every area of our child’s development, every facet of his identity, not just how he communicated and interacted socially (or tried to), but the way he thought.

There are others who posited that the difference between “autistic vs. with autism” was mere semantics. The issue turned into a feud that I don’t think has ever been laid to rest. Many haven’t agreed to disagree. Some, myself included, believe that parents should refer to their own child in their chosen way without being criticized. We’ve all heard “you know your child best,” and I wholeheartedly agree.

And now in some circles we are being rebuked for even writing about the parental challenges we have faced. Our children are the ones who experience the challenges – no parent would deny that. But parents of non-autistic kids write about parental challenges they face. Why is it frowned upon for parents of autistic kids to write about their struggles with providing the best life possible for their children, and the trials along the way?

I’m not talking about complainers, blamers, or haters. I’m talking about loving parents who want to connect with other parents who walk the same path. Who hope, through their writing, to continue to debunk the myths and eradicate ignorance.

They do talk about the struggles, the monumental challenges their children have faced. They talk about their children’s determination to learn to communicate or to filter the sensory input that prevented them from doing things they – the children – wanted to do. They say things like, “He’s come a long way.” And that’s the latest criticism – that they had to “come a long way” to therapy-out their different-ness. (Part of me understands where the nay-sayers are coming from – I really do, and I’ve written about that topic before.)

She’s come a long way.

I say that about my happily-introverted self after I spent a year and a half training to teach two-day workshops for my job. It was agony, and I cried a lot during the process. I am now certified to teach the workshops at all levels and I no longer have panic attacks. I’ve always been happy being an introvert – and still am – but I’ve come a long way so I can do the job I love.

I say that about my non-autistic son when he overcomes something that was particularly challenging. His own sensory issues prevented him from riding a bike until his teens, which he now does avidly. He became a voracious reader after having experienced a good amount of difficulty in learning to do so, and he kept trying.

He’s come a long way.

And I say that about my extroverted autistic son when he began communicating by using wooden letter blocks to spell out words and, years later, can have a spoken conversation. I said that when he tried to be social at the playground – because he wanted to – and sadly alienated all the kids. And so many other things he worked hard to achieve – because he wanted to do them, and he didn’t want his different-ness to prevent him from doing so.

Now, I proudly tell people that he’s in a supported living program in his own apartment. I honestly can’t find anything questionable about saying that my son has come a long way. In the validating words of Temple Grandin, my son is “different, but not less” and has proven it over and over again.