Thursday, 7 November 2013

Watching, Waiting, Hoping.

Note: Before I start, I'd like to give a "heads up". This post is about supporting our son with the help of a medication (Ritalin). There is a lot of very scary information about Ritalin (in fact, any medication) out there. There are also a lot of people who are passionately against the use of medication, and Ritalin seems to be on tabloid style current affairs programs and talkback radio every week, and always in a negative light. If you are someone who is absolutely against medication, especially Ritalin, then can I respectfully ask you to please just skip this post. I'm not out to change anyone's opinions, nor am I looking for other people's opinions (to be quite blunt), I'm just here to share our story. Thank you.

The Bubbly One collected an additional diagnosis today. ADHD. Surprising? Not at all. How do I feel about that? I have no idea. It just is, as it has always been, we just have it on paper now.

I wrote this two weeks ago after a visit to Bubbly's developmental paediatrician, and I was just going to delete what I'd started and just not bother. Bubbly's ADHD diagnosis wasn't a shock. Like his autism diagnosis, his paediatrician gently began to broach the subject after I spoke about his hyperactivity, his impulsiveness, the danger he's putting himself in on a regular basis, his running off and his frustration with himself when he cannot attend to anything he wants to. He danced around saying the words, and like his first diagnosis, I confirmed it. "He ticks all the boxes" was how I phrased it this time. There was no grand announcement, just an explanation to the school as to why he will be taking Ritalin.

... fulfils the diagnostic criteria for Attention Deficit Hyperactivity Disorder under the DSM V...

It's true. It just is, as it has always been. We've recognised when he is sensory seeking and why. We swear by sensory integration OT, we use a sensory diet, and continue to do so. We've already started Catapres (Clonidine) in a bid to help our boy to get the sleep his mind and body so desperately need and to help him to concentrate at school, and it has helped. He has positive behaviour plans in place everywhere he goes. He has been in speech therapy since he turned two and we implement everything at home and school. Everything has helped. But we had finally reached a point where we had to acknowledge that none of it was enough. If we could live between home and school for the rest of our days then perhaps we could have avoided this. If we were content have our child struggle to learn, to concentrate, to blame society and a lack of acceptance for his low self esteem, then perhaps we could have left things as they were.

But the reality is that there is a world out there that my son needs, and wants to be a part of. My son has a love of learning, but he also knows his limitations. He always has, and if he thinks that he isn't able to do something then he will not try. He couldn't concentrate. He couldn't sit still. He couldn't relax and do the things that he likes without bouncing and moving and fidgeting and getting up to do things, and then getting distracted by other things, and then being thoroughly confused because he had no idea what he wanted to do or how to go about doing it anymore.

I'm confused just reading that, and if you are too then that's just a little insight into how he was feeling!

He was also at risk constantly, no matter how much I was glued to his side, and sometimes this also put his little brother at risk also. "Helicopter mother" is a mild term for the level of supervision needed to keep The Bubbly One in one piece. He ran onto the road, over and over again. He would have done so many more times had he not been wearing a harness or had me holding him in a death grip. He ran at stairs with no awareness that he would fall with his low muscle tone and poor coordination, he grabbed at hot things, he'd run into water over his head, be pulled out and do it again, and again. I returned from a minute toilet run and found him with a carving fork from the dishwasher in his hand the other day waving it perilously close to his brother's eyes and his own. Earlier that morning he'd pulled the (locked) utensil drawer so hard that it broke and flew out of the bench top, scattering all manner of sharp items onto the floor at his feet. Then once I'd repaired it he did it again, and again, and again (yes I'd removed the sharp items). These are just a few examples of what we see nearly every day and every near-miss terrified me.

 So I had "the" conversation with Bubbly's paediatrician, and he told me that the most successful and safest drug for treating ADHD is Ritalin. I'd done my research and it terrified me. There are so many horror stories out there about Ritalin and it's sister drugs, and there is so much hate out there for parents who give it to their children. I expressed all of this to The Bubbly One's paediatrician, and he gave it to me straight. He talked through the side effects, how it should and should not work, and how we ease him onto the dosage so as to make the transition easier for him, and hopefully lessen the side effects. He gave me a plan to ease him onto it so as to minimise the side effects as his body adjusted to it, monitoring forms for us and the school to complete to track side effects and performance measures, and some reading material on what we could possibly expect during the transition period.  He also talked about what he has witnessed in his decades of experience in treating children like my Bubbly One, and he told me the statistics that you don't hear about, where it has been a wonder drug, and indeed, when I later posted on my Autism Bubble Facebook Page the response that I got was overwhelmingly positive.

I have to admit, this surprised me. I expected to be flamed for even considering giving Ritalin to my child, but I had comments and private messages saying that the first week or so was tough, but that they hadn't looked back, that their children had made huge progress once they could concentrate, and the added benefits to their relationships and self esteem. There were also others, like us, who had contemplated walking down that road but hadn't yet, because they were afraid, because they'd heard the horror stories, because they'd spoken with doctors who had accused them of seeking a "quick fix" and who'd heaped judgement on their heads for even thinking of medicating their child. So many of these families begged me to keep them posted on how The Bubbly One went, and I suppose this post is for them.

I wish I could offer more to those families. I wish that I could say that Ritalin has solved every struggle we've had. But I don't have a clear conclusion as to how we feel about it yet. I can see some great things happening for my Bubbly One, and I can see some other things that have us concerned that perhaps this isn't the right dose for him, or the right drug. He has been on his full dosage for five days, and after nearly two weeks we are still waiting and watching. Like anything in this blog, I can only describe our experiences, and I can only interpret how I think my son was and is feeling. I like to think that I'm very tuned in to him, and truly, I do know him better than anyone, but I don't always know what's going on in his mind, and I am the first to admit that sometimes I have no clue and I get it wrong. So here is the last two weeks, as I saw things.

Days One to Three
The first three days were terrible, and it really put Bubbly and our family through the wringer. Bubbly got the common side effects of Ritalin which were headaches and appetite loss, and stemming from that, nausea and possibly abdominal pain. He was irritable and so noise sensitive that he couldn't stand any sounds that his brother made, something we hadn't experienced since the first couple of months after The Little One was first born. My heart broke all over again at this and I nearly stopped it then. He was also eerily quiet (once the paracetamol had kicked in and his head wasn't aching). He had meltdowns after school, from the moment he got into the car and continuing for an hour or so after we got home, until such time as I was able to get some food into him because he'd be white as a ghost and shaking by that stage. School reported that he was very quiet and still, and that he'd needed the pain relief I'd supplied. He had concentrated well on his work, but he hadn't been his Bubbly self. He also struggled to sleep and was waking at 2-3am again, despite having his bedtime clonidine, and the "rebound" hyperactivity once the lunchtime dose wore off was as full-on as before taking the medication.

Days Four to Six
On day four the headaches seemed to subside, though his appetite diminished even further, so getting calories into him became a big part of our morning and afternoon/evening routines. I tried meeting him after school with a dietary supplement drink they use in hospitals here for patients with poor appetite and that seemed to help. Once he drank that he began to slowly eat and was beautifully settled and happy. For the first time in a long time I heard giggles and singing from the backseat instead of screaming and thumping, and the good mood continued at home though he grew more hyper as the afternoon progressed and woke at 3:20 the next morning. Despite that though, he was focused and interactive at feeding therapy- totally different from any other time when I've been involved in an activity at school. I saw him follow a six step visual schedule without issue, which he'd never done without huge effort by his support person (and huge resistance from him). Day six was uneventful.

Day Seven
We tried the afternoon dose on day seven, which we have the option of using or not using, and even though it was only a half dose it's not something we'll be continuing. It totally killed what little appetite he had, he couldn't sleep and he woke up wired at 2am the next morning and then was asleep again at 7, which then confused his day entirely, and also brought on the headache we thought he was rid of.

Week Two
From there though his behaviour at home has steadily improved. His eating is still a concern, and he is more difficult to settle for the night, though he is still out by 8:30 so we really can't complain about that, and the early mornings are down to once or twice per week. The Little One has been very unsettled and miserable due to teething and separation anxiety (the joys!) this week, and my Bubbly Boy has managed to stay calm through some very trying mornings. He's also interacting with his little brother again, something that had started to dissipate pre-meds and something that I was also very worried about. Now instead of ignoring him, or getting annoyed with him, he is smiling back and taking notice of the little brother who adores him, and who follows his every move. He's also clearly taking in a lot more and responding appropriately. We've seen an increase in his conversational language (it's still not much but enough that we've noticed). I've noticed more echolalia and scripting emerging, and he is copying the movements and following the instructions given on some of his DVD's that he watches at home.

I've also been able to take him out without major difficulty, and he's enjoyed himself and interacted with people when they've spoken to him, whereas before he was always too hyper and fixated on things to notice. His behaviour plans are working a lot better and he's understanding why things might not be the way that he wants them to be. For example, I took him shopping early one evening (during his "witching hour" actually, that's how good he's been) and the bakery where he always buys a donut before going into the supermarket was closed. Normally this would've resulted in a screaming, door-banging meltdown, but this time he actually listened when I explained that the bakery was closed and that the people had all gone home for the day, and he was easily redirected to the car. So with us, it's been mostly positive- not perfect, we've still had some good tantrums and plenty of hyperactivity of an evening, but the meltdowns have decreased because he is coping better with the demands being made of him, and he seems to be understanding what's happening better because he's slowed down enough to process things.

When he's not with us is mostly when we're seeing the things that concern us, particularly at school. The Bubbly One's school has been nothing but supportive and have worked with us every step of the way, but Bubbly hasn't seemed to be as happy in his school environment, whereas it used to be the place that brought out the best in him. Where we struggled at home, school managed easily and they'd seen very little of the behaviour that was the norm at home. The Bubbly One is one of those kids that turns up ready to work. He keeps it together all day long, then when he is home and feels safe the stress comes out. On Ritalin he is certainly focused and concentrating well on his work, but he is anxious. He is seeking reassurance and cuddles often, his hands are over his ears constantly and he is just not quite his usual bouncy, bubbly self. He's also not eating much at all and they are struggling even to get the supplement drink I'm sending in into him. He's also choosing "sad" a couple of times a week in his "feelings" part of his visuals that he brings home to talk about his day with us, but when he gets in the car he is happy and laughs at me when I ask him about it, so I'm really not sure what's going on there.

I can tell that his teacher is trying to be positive but that they don't think it's right for him at school, and I respect their opinion. They've done things with my boy that I've never been able to get him to do. But I also have to wonder whether the environment at school is contributing to his anxiety and noise sensitivity. His school has a lot of construction work going on and this means that the second we pull up in the mornings he jumps and covers his ears because he can hear power tools. Today (Day Thirteen), there was less mechanical noise at school and he had a great day with much less clinginess, and was much more "himself". Has his improved concentration been making those already feared sounds more prominent to him? His OT is inclined to think so. Perhaps it simply is an increase in anxiety, caused by the meds. It can be another side effect of Ritalin. I'm not sure, and it's what we're currently trying to work out. So for another week or so we will continue to watch, and wait.

So that's where we're at. Waiting, watching. I feel guilty for even writing this, given that it's not my body having to adjust to the medication, but I have to say that it's also been really difficult for Daddy and I. Neither of us slept much for the first five days, though we were exhausted. We were distracted as we went about our everyday work- for the first time ever I totally messed up our finances, paid the wrong bills and had to borrow money from my parents to cover our mortgage (thank God they can and did help), and Daddy, ever the perfectionist with painful attention to detail, was making mistakes at work. But more than those things that can be fixed, we were so desperately worried for our little boy. We love our kids more than anything on this earth, and we felt every cry, every scream of frustration and every babbled attempt to tell us what he was feeling in those first few days like a stab to the heart. Though I'm not sorry that we're trying this medication, I truly wish that there had been another way. I hate the "trial and error" of this process with a child who can't tell us much about how it is affecting him. I wrote back in June:

My son's life, his emotions, his experience of the world, is for the most part interpreted for others by me, and it has been gut wrenching to see him so unhappy and not know what was turning his world upside down, nor what I could do to make things easier for him. It was terrifying to give him a medication, even when his paediatrician (whom I trust) said that it was safe, to wait and watch for possible side effects and to feel like I was pinning my hopes for my son on something that might make things worse for him.

Different medication, same emotions, only tenfold. But nearly two weeks later, I think, and so desperately hope, that we have seen the worst of this process. We see the paediatrician in a month for review, and if need be I can call him before then. We may need to reduce the dosage or try another medication if the side effects are too great. But for now, we watch, and we wait, and we hope.