Archive for April 2011
I’m roused from my sleep suddenly, viciously, by Pudding’s scream. My husband rushes out of bed before I can even move. He doesn’t come back, choosing to sleep in the chair by her bed instead. Melatnonin doesn’t help, the weighted blanket is working, or the white noise, or anything else. She just needs her sleep, just like the rest of us. This is the second time he has gone to her, and I know he is too tired to do it again. He has to work in the morning. It is 4 am, and my heart pounds. I try to breathe, I’m suffocating. Amongst the noise of thoughts pushing for attention in my head, one is louder. This is anxiety, it shouts. I listen. I try to breathe in and out, slowly, quickly, through my nose or mouth, anything to calm myself.
Sleep evades me. Though I’m in a fog from headache tablets, I can’t find the peace I need. Eventually I get up. I’m not supposed to have anxiety. My husband has struggled on and off all his life. For my girl, it is the shackle of her autism. My boy doesn’t escape it either, but this is new to me. Now I’m in anxiety’s grip too.
I come downstairs and start to type, hoping that I can write out these thoughts that are looping around my head. This has been building up for a couple of weeks, not just for me, but for Pudding too. She has been struggling with sleeping alone. Stressed and exhausting, I allowed her to sleep with me. I know it isn’t the right approach, and by taking the path of least resistance, I’m exacerbating the problem, but I’ve just been too stressed.
Wait. The path of least resistance has led to this stress. These things are not happening independently. I’m stressed, so I slack, and that exacerbates the problem which makes me….you’ve guessed it- more stressed. And Pudding doesn’t so well surrounded by stress. She absorbs and then reflects all the emotions around her. It makes her anxious. Seeing her struggle makes me more stressed, and round and round, and down and down we go.
So I must stop. I have to be the one to stop the spiral, because she can’t.
I need to focus on calming her by providing what she needs, not what is easiest to give her. First she needs patience, a resource that is in incredibly short supply when we don’t get sleep. She needs positive reinforcement. She needs her senses soothed even if she doesn’t feel like doing the things that will help her. She needs consistency and she needs social stories to explain what is going on. In short, she needs all the supports that I readily provide when I’m feeling at my best, but which have somehow dropped away as my anxiety took its hold.
It is not to say that I’m not allowed to feel stressed, or anxious, or just plain miserable. I just need to make sure that when I’m feeling this way, I don’t take away all the things that she needs to prevent her from these very same feelings. It was a revelation: I can be the beginning of the anxiety, but that also means I can end it. It will take more effort at a time when making an effort is the last thing I feel like doing, but the results are already promising. And she has slept through the night by herself before, so she will do it again, as always, in her own time, and with the supports she needs.
As for me, I feel better already. Maybe this is the beginning of the end of anxiety.
Taking part in the Mental Health Blog Party:
May 18th, 2011
This was going to be a very different kind of post. Very early yesterday morning I started to write through a very bad mood, and in the process of doing so, had a revelation, and ultimately came to a resolution. Now, the working through of the problem is worth a post in itself, but that will simply have to wait for another day, dear Reader, as I’m far too excited about the results of my solution. I know that I’m being cryptic, but just bear with me. I become far less coherent when I’m giddy, as anyone who has ever had a drink with me will tell you.
So my resolution was that I had to be more positive. That my negativity was causing havoc on the rest of the house, and creating a vicious cycle of anxiety. It isn’t that I didn’t have justifiable reasons for feeling negative, and I do have every right to go a day or two without being Ms. Perky Perfect, but as I was the only one capable of breaking the cycle, I needed to do so, or face the fact that things would only continue to spiral downwards.
I resolved to do so with all the gusto of someone who had been awake since 4 am with a two day-long headache, and really needed it to end. Pudding needed to do calming activities that she liked and were rewarding. Two of these activities had been incorporated into her reward chart, so it was time to get working on them. Pudding does a listening program that was prescribed by her first OT. She listens to modulated classical music through special headphones. We’ve noticed an improvement with her anxiety when we do it, but she resists the activity, and I hadn’t felt like fighting her.
With the promise of a token, I coerced her into doing her music. We went downstairs to draw on her easel, and I helped her put on her weighted vest. Usually we draw together: she likes drawing people, and I get the more difficult requests, like “Easter” or “aquarium.” This time I drew a cat, and asked her to write it. She’d only ever written her name freehand before, I was expecting and instant refusal, but she wrote each letter as she sounded it out C-A-T. Her first written word! Only last week in her evaluation I’d said that she couldn’t do it, and here she was amazing me. That was enough of a result to keep me happy, and reward the positive approach, because, you know, Pudding isn’t the only one who needs positive reinforcement!
She told me she was going to draw me. Nothing new there, she likes to draw people. But after she finished she wrote as she sounded out M-U-M! I knew she was able to spell cat from an app on her iPad, but Mum was something else entirely! Afraid it was just a fluke, I asked her to do it again. She both drew and wrote it again. She didn’t write Dad when I asked, but she did a very good try at her brother’s name.
And then I ran for my camera, because I wanted to keep this memory, and if negativity overwhelms me again, I can click on this page to chase it away again. It took some working through to get to my solution, but I think you’ll agree that the results are worth it.
Guest post by Spectrummy Daddy
Spectrummy Mummy likes to joke that I have permanent foot-in-mouth disease. It seems that I have a knack of making comments at exactly the wrong time, and usually I don’t even realize I’ve done it. I’ve decided to tell you one of those times, and how it has now paid me back.
The day before we discovered Pudding was on the way, my longest-serving friend, Chandler (not his real name), and his wife, Joanie (or hers), were in town visiting Spectrummy Mummy and I before we left for Luxembourg. Now, to understand something, Chandler and I think a lot alike. We used to get in trouble all the time in classes we had together. In fact, in one class, the teacher was so sick of it, he moved Chandler to the other side of the room, and we still got in trouble because we’d exchange a look and just laugh. With this in mind, picture the 4 of us as we’ve just gone to a Caribou Coffee after a cold time in front of the White House taking photos.
Joanie and Spectrummy Mummy went to find a table while Chandler and I went for coffee. Chandler likes his coffee a lot. We order, wait to get our coffees, and head to find our lovely wives. As we sit down, and with Chandler’s love of coffee in mind, I ask him a simple question: “You’re not going to be one of those parents that let their kids drink coffee, are you?”
Joanie and SM look at me aghast, and Chandler just looks confused at their horror. To both of us, it seemed like a perfectly normal question. All of this took place in exactly 2 seconds, as I glanced to SM’s right. There sits a little 4-year-old drinking coffee, and his father has just heard what I said. I quickly add: “Cause that would be awesome,” hoping this will assuage the gentleman. He looks at me, and says kindheartedly, “Well, you’ve got to teach them to drink the good stuff early, right?” SM and Joanie are just embarrassed, and Chandler is still trying to figure out what was going on. I vowed right then and there two things: 1) I would always look around when making judgmental pronouncements, and 2) I would never be that guy whose kid drinks coffee at coffee shops.
As Spectrummy Mummy’s post the other day showed, my kids are intimately familiar with the symbol for Starbucks, and they like to talk about “getting a coffee.” They don’t drink coffee, but it sure looks like they do when they have milk in a Starbucks cup. Maybe that kid long ago was just drinking milk, and I was being a pretentious jerk. All I know is that we get those looks of disdain when my kids talk about getting coffee, and I always think back to that day. I think about the looks I get from other parents when my kids act up, and I remember I was a bit judgmental as well. I also remember the look of understanding from the father, and I try very hard to be as cool as he was that day.
Today is my 200th post, which I think allows me to call myself a prolific blogger, because I like using big words.
As you might gather from the opening, I’m in a much more upbeat mood. Having got my fears off my chest in yesterday’s post, I proceeded through the appointment with stoic calm. I tend to handle stressful situations pretty well, I’m not a bad person to have around in a crisis, or even after a crisis. But there is probably nobody worse to be around before a seismic event. Leading up to that point, I blow things out of proportion, I worry about the worst case scenario, I am doom and gloom. So a simple appointment at the hospital causes momentary panic, and then I deal. It may not be the best strategy for dealing with life’s twists and turns, but there you go. Having called into question my ability to deal with Pudding’s needs, I was calm, rational and prepared by the time we got there.
Pudding woke up with a cold. I’m not going to use that as an excuse for the results of her testing because:
- We did not accompany her for the testing, and won’t find out for a few weeks how she performed, she could have done really well for all I know.
- There is always something. If not a cold, then a bad night, or she was out-of-sync, or something would mean she wasn’t on top form. Top form days are awesome, but they are rare. Let us use this day as our baseline, however it turns out.
- The testing is not carried out to send me into a vortex of despair, much as I may have thought that in the wee hours of the morning. It is to determine which interventions will be the most useful to her at this stage. The vortex of despair is just an added bonus, for those who like to see me lose my composure. I must admit, it is quite funny.
- It is the best we can do with what we have. Really, I should have come to that reason first and stuck there. I might just end my next 200 posts with that sentence.
As we were not, in any way, questioning the validity of her ASD diagnosis, we got to skip a lot of repeat testing, and just concentrate on her current performance. Her part was over very quickly. In fact, the psychologist commented on just how difficult it is to keep up with her, so quickly did she move through the tasks. Yes, you don’t have to tell me that!
We’ll get all the results when we return in May, but as much as they mattered to me when I couldn’t bring myself to complete the forms, I honestly am not concerned now. At the beginning of the meeting, the psychologist asked why we were there, and instantly I felt relieved. Oh yes, the panic was for a reason. I’d almost forgotten we were there for something!
I asked for their expert advice on preparing Pudding for the move to South Africa. I told them that we’d found a great preschool program that I’m happy with, but asked what else we need to put in place to best facilitate her development. We answered many questions about her strengths and weaknesses, and the good and bad parts about the services she is currently receiving. I’m confident that they now have a pretty good idea about our girl and where she is now, and will help us to help her reach her full potential.
I’m optimistic about the move, and assured that we’ll be able to prepare her as best we can. We do the best we can with what we have. Today what we have looks like a whole lot more than yesterday. We have 102 days to get it right, and every day I’m going to repeat my new mantra. You can join in too.
The Package of forms from the hospital is just as heavy as last time. Its bulk doesn’t comfort me, though they are blank, I’m scared to complete them. I quickly hide them in a drawer. It loiters in the drawer, unopened, for three months. I know it is there, but I will myself to ignore it. Finally, one week before the appointment, I have to open it, can put it off no longer. Lucky that I did, there are forms for her teacher to complete, and there is only one day remaining before Spring Break. I quickly tuck the rest of them away.
We’ve completed these same forms before. That time there was a sense of urgency. In my desperation to understand, I pushed away the overwhelming thought of what my answers would mean, and just responded to the questions posed about my girl’s development. Just questions, they don’t define her. Then those forms were evaluated, and more evaluations took place, and a label came which still doesn’t define her, but altered the course of our lives nonetheless. That label brought answers, and understanding. It brought recommendations for therapies that we just couldn’t afford.
It also gave us a new starting point. A ground zero from which to chart her progress. And this is the part that scares me. The first time around, we compared her development with her peers, now we compare her to her younger self. Yes, there has been progress, but has there been 20 months of progress? In our game of snakes and ladders, are we moving forward? I can’t help but reflect that had we been able to follow their guidance, there would have been much more of that elusive progress. The feeling as familiar as the package of forms: Guilt.
Guilt is debilitating. It leaves me prone. I must fight it, because she needs me to keep moving forward so that she can too. We do the best that we can, with what we have. That maxim motivates me. My armor. I size up my enemy again: Guilt. Nothing compared to the opponents my girl faces every day. The best that I can do right now, is simply to fill out a few forms. It isn’t easy for me, but like my girl, I try my best. Time to open that drawer.
I did open that drawer on Tuesday. There was no filling out the forms though. Every time my attention was elsewhere, a pair of supervillains intent on destroying
the house, my patience, each other, the world took over. Eventually when peace was restored with bedtime, I opened up the envelope again, and got to work. I don’t remember what answers I gave the first time around, but I suspect many things remain the same.
But there are so many things those forms don’t measure. A burgeoning sibling relationship, the ability to work out what she needs even when her system is threatened, the capacity to make friends, flexibility in the face of disappointment. So much more than I’d have hoped for the last time. I just need to remember that for today. I’ve been trying since the early hours of the morning. I have the same worry and guilt as ever, but now mixed with pride and hope. The heady cocktail of a Spectrummy Mummy doing the best I can, with everything I have. Just like any other day.