At the Threshold

Posted on November 15, 2012 by Tanya Savko

Tomorrow, Nigel and I are going to tour a local supported living facility that is a potential home for him in seven months. Now that he’s 18 and approved for adult services, he’s eligible. How did we get to this point?

There is a part of me that is elated, I am sorry to admit. I have been his primary parent for 14 years, and a co-parent for four. And I don’t have much left in me to give. I have been to every single goddamn IEP meeting for 15 years. Not just the annual ones – they happened more often than that for him. Add to that all the extra meetings and conferences with teachers, principals, therapists, and specialists. All the emails and phone calls. God help me. The phone calls – that there was a behavioral problem and I needed to leave work and pick him up. So.Many.Times. The doctor appointments. The blood tests. The changing of medications. The seizures, the horrible seizures and my resulting PTSD. The MRIs and EEGs. The picking up of prescriptions and their not being ready and my time being wasted. The forgetting to take his medication and me having to drive to his school to get it to him. The bullying. The bullshit of dealing with the teachers and school district about the bullying. Having to homeschool him because the school district suggested he be bussed to a different school district. And moving farther back, there were the years of screaming and bolting in grocery stores, restrooms, parking lots, restaurants, almost any public place. The extreme sound sensitivity. The not talking. The echolalia. The explaining/apologizing for his inappropriate behavior. The fear of the future.

But I am also elated about the prospect of him moving out because the past two years, since his epilepsy started, he has been very difficult to live with. By that I mean, as I mentioned in my last post, that he has become aggressive. He has also been verbally abusive to me. He has yelled at me and frequently says incredibly disrespectful things. I realize that a large part of that could have been due to his undiagnosed, untreated bipolar, which we are still jockeying meds to manage. But I am near the end of my proverbial rope. I am holding on – trying to – for seven more months until he graduates from high school with his modified diploma. I feel that I owe him that – staying home with me until then. He has worked as hard as he could to graduate with his peers. That’s all he ever wanted – what he said to me when he was 10 years old (and again at 12) – I just want to be like everyone else.

And it pains me to still see the differences. It pains me to think that, after everything we’ve been through, placing him in a supported living facility is the best I can do for him. He’ll still be able to take GED classes at the local community college. But I’m not elated about that. I’m also not elated that I’m having to “think of the future,” as my mother pointed out. “What would we do if something happened to you?” To be honest, unlike most special needs parents, I don’t think about that. I’m not sure if it’s because, as a long-term single parent, something has already happened to me: I’m a burned out shell of myself. I’ve had to do more than double duty for too long, and the thought of some other entity taking over soon is the only thing keeping me going. Or, the fact that I don’t worry about what would happen in my absence might also be because of a different something, something that parents of children with epilepsy try not to think about but that keeps us awake at night (check out #10 at this link). I may outlive my child.

Regardless, we are at the threshold of the future I previously feared. We are here – transition is now. In childbirth, as many of us know, transition is the period of labor that comes right before pushing. It’s the most intense part of the process and the contractions are the strongest. And the pangs I am experiencing now, before the last push in June, are incredibly strong. I want to do right by him, because I love him fiercely, as much as I ever did, but his behavior is making me think I will not miss him! I know, it’s supposed to happen that way. Some birds need a little nudge out of the nest. But somehow this feels different. Probably because he’s such a different bird.

I tried so hard to ensure the best possible future for him. Understandably, I was crushed when what I thought he needed didn’t happen. But during this time of transition, I am realizing that what I thought he needed for a successful future might have been mere wishful thinking on my part. Even before he could talk, I have always thought that Nigel would succeed on his own terms. Sometimes, I just need to remind myself of that.

image courtesy of http://www1.cgmh.org.tw

When It’s Not Okay

Posted on October 30, 2012 by Tanya Savko

I call my son’s name about five times to try to get his attention. He is clambering on top of a 5,900-foot high volcanic plug in southern Oregon called Pilot Rock. Everyone in our group has reached the summit and is walking around on the larger, more easily accessible area, but Nigel has opted to climb over to the more difficult portion, separated from everyone else, and has happily been there for quite some time. I continue to try to get his attention to let him know we are ready to start our descent, but he does not respond, even though I know he is well within hearing range. He is in his own world, verbally stimming. He is 18 now, and autism is alive and well.

I haven’t posted for a while, and there are several reasons for that. I could delineate each of them, but there’s one that stands out. It’s huge and it’s overwhelming. And it’s not talked about enough in the autism community. It’s usually hidden, brushed under the rug, and denied, when really it’s the bear in the room no one wants to poke. Some of us with older children – young adults, even – are reluctant to talk about it outside of our immediate families because we don’t want it to affect our children’s (possibly soon) future plans and dreams (yes, I’m referring to myself). But maybe that’s part of the denial. If I don’t talk about it, maybe it will go away.

In the past year my sweet, gentle son has become aggressive. And I will not go into detail except to say that it has sadly gotten to the point where I have had to look at supported living options for him, in the event that he can no longer live with me. I hate writing this. But I feel that I must because I know there are other parents experiencing this, not knowing what to do. Feeling blindsided. Feeling alone. Asking why me?

The first thing to do, if you have not done so already, is to contact your local Developmental Disability services office. This is usually handled by the county, but it may be different in other areas. There may be an evaluation process to determine eligibility, so get started as soon as possible. Once your child is found eligible, you will be assigned a case manager who will work with you to discuss housing options and tell you what services are available, including a behavioral consultation that may help determine the underlying causes of the aggression and what to do in the short term to manage it. I also contacted our local police department to tell them about my son and to determine ahead of time what the procedure would be if he were having an aggressive episode and I needed to call 911.

The second, and equally important, thing is to try to figure out what might be causing the aggression. In Nigel’s case, it started about a year ago when we increased his anticonvulsant medication (because he was still having seizures). Each time we needed to increase the dose, he had an aggressive episode, and they continued to get worse. I didn’t make the connection at first, but after six months, I finally did. I did some online research – not just chat boards (although those were very helpful) – but also medical trial reports and studies. It appears that my theory was correct. However, I noticed that he had a couple of aggressive episodes not during a dosage increase, and I also noticed several other symptoms that I recognized as indicative of bipolar (since I have it). So I finally got his neurologist to start him on a new anticonvulsant, but it’s not yet at a therapeutic level for us to decrease the “bad” one. And I finally got Nigel in to see the county’s adolescent psychiatrist just last week. She said that autism and bipolar are often comorbid disorders. And after a thorough evaluation, he received a diagnosis of bipolar and was prescribed a mood stabilizer. Bipolar is often treated with anticonvulsants, but the doctor felt that Nigel’s case is severe enough to warrant additional medication. Furthermore, due to some anxiety and OCD symptoms, Nigel had previously been prescribed an antidepressant, which was no doubt causing manic episodes and aggression.

At the time of this writing, we are still very much in med-change mode, and we have not yet been able to decrease the first anticonvulsant, so there’s no change to report. But I do have one positive note to end on – that we obtained this additional diagnosis while he is still with me, so that I can get him the medication he needs, and above all, that he can feel better. Because to say that he has not been himself is a huge understatement. I know how awful bipolar has been for me, and the thought that his is worse than mine pains me greatly.

I realize that I may be criticized for writing this post, for exposing my son’s problem behavior. But I did not write this post for attention or sympathy, I wrote it for the same reason that I started writing and blogging about autism five years ago: to connect with other parents and help those in the same boat. Our children’s aggression is scary, bewildering, and very hard to talk about. But it’s often part of what we face as parents of children with autism, and we have to talk about it. We owe it to ourselves, and we owe it to our children.

Eventually, Nigel noticed that I was summoning him, and he got down off the rock. But all the way back down the mountain and to the car, he strode on ahead of the group at least a tenth of a mile. He was argumentative in the car. And that night he had one of his worst aggressive episodes ever. I may never fully determine what causes his aggression; most likely there are multiple causes (sounds familiar, I know). But I will do everything in my power to figure it out and help my son. Autism has been our bedmate for quite some time. It’s still alive and well – but, with a few adjustments along the way, so are we.

Surfacing

Posted on May 24, 2012 by Tanya Savko

In 2008, when I was a new blogger, I would find a few blogs that I liked and read them for a few months, and then the blogger would stop blogging. Their last post would be a fairly typical post for them, with no indication that they were going to stop blogging or needed to take a break from it. So I would keep checking back and wonder where they were. And after a few months I remember thinking, if they were going to stop blogging, whether for a while or permanently, why didn’t they write a post to that effect? Why leave us hanging? What gives?

Of course, since last year I did that very thing, I now know the reason. It isn’t because they wanted to leave anybody hanging. It isn’t because they were trying to encourage anticipation or garner attention. It’s simply because they didn’t expect to stop blogging. And probably because of a lot of other things they didn’t expect.

For instance, they might not have expected their site to have been hacked, as mine was shortly after my last post (I must have garnered some attention). Nobody expects that. Neither did I expect my feed to be invalidated (and as bloggers know, having your feed invalidated is a bad thing – cost me $150 to have it fixed). But the upside was getting to rebuild my site and deciding to add some new features, including a page for my Editing Services and a revised About page (less about events, more about what I believe in). It’s been time consuming to rebuild, but also therapeutic.

And boy, did I need therapy. I suppose that was something I did expect. But I didn’t expect that it wouldn’t make everything all better. (Does that make sense?) I somehow thought that with all the time (and expense) I put into psychiatric care and therapy that by now I could go on my merry, well-adjusted way. I didn’t expect that my medication would make me feel dull, uncreative, and sluggish. I didn’t expect that I wouldn’t be able to write for over six months.

I didn’t expect that when I would try to sell my house again, after owning it for nine years, that it would not only be worth less than when I bought it, but less than what I still owed on it. And so, one stress-filled short sale later, I downsized to an apartment less than half the size of my house. I had thought my year of letting go was over, but I found out that I had a lot more letting go to do! My Goodwill tax deduction is going to be pretty substantial, for one thing. But we are settled in our new place, and Nigel can still ride his bike to school, which is important for him.

Nigel. I did not expect Nigel to continue to have seizures. I also didn’t expect that increasing his medication would cause severe aggression, necessitating police involvement. I didn’t expect that my sweet, funny, gentle son would be replaced by an angry, volatile, downright mean stranger. Thank God the worst of it subsided after about a month. But it was a month of stress-filled phone calls and appointments with doctors and counselors, visits to police stations, and being on pins and needles in my own home. Now that Nigel has adjusted to his medication increase, I would like to say that since doubling it he has not had any seizures, but unfortunately he has. And I don’t know what to do. As much as I hate saying this, it feels like epilepsy has the upper hand. I didn’t expect that.

It’s not so much what we don’t expect in itself; the hard part is learning to accept it, to acknowledge that it’s now part of our identity, and ultimately deal with it. Constantly kicking our ribs to move forward, to not crawl into bed and cry (and when you’re wrestling with bipolar, that’s a tall order). But ultimately, curling up on the couch to watch a movie every night – escape – became a greater risk than turning the computer back on and doing what I believe I was put on this earth to do.

It got to a point where something in me couldn’t stay down any longer. I am surfacing. For one thing, I have a book to finish. It’s always been in the forefront of my mind, waiting for me to dive back in. And blogging, well, what can I say? I might need to take an unexpected break now and again, but for me it’s definitely a case of once a blogger, always a blogger. I’m a bit rusty, but I’m back.

It’s Okay Now

Posted on September 18, 2011 by Tanya Savko

I was leaving for work the other morning, walking to my car parked in the driveway, when I heard something that instantly got my attention. It was coming from the bus stop for the middle school kids, and it sounded like an argument or fight. I listened a few more seconds and realized that one kid was loudly “performing” while the other kids stood in a semi-circle around him, laughing, ganging up on him. My PTSD kicked in, my heart raced, and my blood ran cold. Nigel had left several minutes earlier, riding his bike the opposite direction to the high school. I knew that the situation at the bus stop had nothing to do with him. But my body remembered how it felt, four years ago, to know that it had everything to do with my son. That he didn’t know how to interact with his peers so he “performed” for them, acting out a scene from a movie. They laughed at him, and he became agitated and angry, which made them laugh more. As a parent, it was horrible to witness. My instinct, four years later, was still the same as when it was my own child being targeted. I started to go over there to lecture them about not laughing at someone who communicates differently. But after I took a few steps, I realized that the kids at the bus stop were not doing what had been done to Nigel four years ago. The louder kid was trying to engage them in playing along, and they were interacting, laughing together. It wasn’t what I thought it was. It was okay. And, still shaking with adrenaline, I turned and walked back to my car and drove to work, trying to contain the sobs in my chest.

We recently had Nigel’s annual IEP meeting. It was a big one, now that he’s in his junior year of high school. Yes, you read that right – junior year. We’re in heavy transition mode, moving into the “later phase” of transition as described in The Autism Transition Guide: Planning the Journey from School to Adult Life (which is a fantastic resource). We’re almost there, people, and I’m trying not to freak out about it. This is what we spend all our time, energy, and effort preparing for. This is where the money meets the mouth. The moment of truth. And we’ve got just two school years left. There’s a lot to do in little time. The “good” news is that by now, most of Nigel’s IEP goals are executive function-based, as opposed to academic or even social. His social skills class has dropped down to twice a month, and I wondered if it was enough, wondered if his social interaction at school had really progressed to such a low-need level to not even necessitate an IEP goal, even though I agreed that the executive function goals are paramount at this stage of the game.

This past Friday was the high school’s Back to School Open House, and Nigel argued that he didn’t want to go. “I spent over six hours there today!” It was the end of a long week, and I didn’t want to go either. But it’s incredibly important for special needs parents to attend Back to School Night, especially when your child is older and has multiple teachers. It’s a great opportunity to touch base with those who attended the IEP meeting and to make contact with those who didn’t. And I remembered that in previous years it had been awkward discussing Nigel’s strengths and weaknesses with him standing in the classroom. So I agreed that he didn’t have to go, and I went to the high school alone, picked up his schedule and a map, and began wandering the halls to find his classes.

I have a pretty standard thing that I say to his regular ed teachers, which is basically to introduce myself, make sure they are aware that Nigel has an IEP for autism, and tell them that sometimes, due to his autism, Nigel will answer a question or make a comment and get off-topic with an idea that he’s passionate about. I tell them that usually a gentle redirect, to remind him of the topic, will suffice. I tell them that if they have any questions or concerns to feel free to contact me, and I thank them for their work with my son. You’ve got to keep it short and sweet because there are other parents waiting in line to do the same thing. But it’s so important to put in the face time, and so worth it.

Finally, I found each of his classrooms. The teachers who had attended the IEP meeting were genuinely excited to see me and tell me how well Nigel was doing and that they were very happy to have him in their class. That comment alone, which I usually only hear from his special education coordinator and social skills moderator, was enough to generate a lump in my throat. But then, when I said my spiel about him sometimes getting off-topic in class discussions, not one, not two, but all of his teachers got a slightly confused look on their faces and said, “Everything he says is right on topic.” For a split second I thought, my kid? Really? They’re not confusing him with someone else? And then I casually smiled and said, “Great! I’m glad to hear that’s not an issue for him anymore!” But inside I was vacillating between wanting to do cartwheels and trying not to cry from sheer joy. He’s on topic! All the time! They’re very happy to have him in their class! That’s four years of social skills classes at work – that’s what that is. And fourteen years of speech therapy. And nearly seventeen years of believing that it would be possible, that one day he would fit in with his peers, still different, but greatly appreciated for who he is.

Some time ago, my wise friend Elizabeth posed this question: “If you could go back, what would you have told yourself right after receiving your child’s diagnosis?” My first instinct was that I would tell my twenty-six-year-old self, who had a seventeen-month-old and a just-turned three-year-old, non-verbal child with autism, “It will be okay.” I had other things I wanted to say, like “Ask for help,” but mostly, I just wanted my younger, scared self to know that I would get through it. And yes, almost fourteen years later, there are still plenty of concerns for Nigel’s future and many stressful things I need to do to facilitate everything. But for the most part, it’s okay now. Wait – do I really hear myself daring to say those far-reaching words? Have we truly arrived? Part of me says that time will tell. But another part of me says that no matter what happens, if he’s gainfully employed or living independently in adulthood or not, it will still be okay. It is now, and it will be. That much I know. That much I still believe.

Focus

Posted on July 13, 2008 by Tanya Savko

This post originally appeared on my Teen Autism site, but I decided that it’s worth repeating:

Last week a friend of mine found a lost dog, a little Yorkie, running around in a street in our town, and she picked him up so he wouldn’t get hit. There was no owner information on his tag, so she called the animal shelter, but no one had reported him yet. She then proceeded to go door-to-door in that neighborhood trying to find the owner and finally did. The Yorkie, Sam, belonged to two older ladies, sisters living together. They were ecstatic to have him back and invited my friend in for tea.

The younger-looking sister was tall and thin and began telling my friend all sorts of wonderful stories about Sam, going off on tangents about their family members, places they’d traveled, and other dogs they’d owned. The older-looking sister, who was shorter and appeared to have osteoporosis, would periodically roll her eyes and say with urgency, “Focus, Martha, focus!”

I laughed as my friend told the story, envisioning the exchange. It reminded me of all the times, especially in the past few months of homeschooling, when I had to redirect my son Nigel by telling him to focus on what we were doing. I often have to remind myself to focus with all the different projects and distractions I have going on. Focusing is how we achieve our goals in the face of daily life. It’s also how to keep things short and sweet when a stranger returns a lost pet. “Focus, Martha, focus!” I had to write that on a Post-It note and stick it on my monitor. It’s the best advice I’ve heard all week.