Last week was extremely tough with Janey, peaking on Wednesday, which would been in the running for one of the worst days for her and for us ever. She was in a fury all day. She lunged at me over and over, scratched herself badly, cried without stopping----it was incredibly tough. We went for a while to my friend Maryellen's house, which Janey usually loves, but this time, she was just as unhappy there, and extended her attempts to bite to Maryellen. The evening featured both boys needing rides from places far away, and Tony took her on one of the rides, even though that made it a ride straight through hell, because he could see I was a zombie by that point. Then I watched her, and she thankfully finally fell asleep at about 7:15.
Tony had called her psychiatrist that day, and thankfully he was able to see us Thursday at 10 am, on an emergency basis. Usually Tony takes Janey to see him on his own, but I went this time with them. I had a feeling what would happen, and it did. He suggested we try a medication I was resistant to in the past. It's a medication that is often used for ADHD, a high blood pressure medication that also works to slow down the system a little, as he put it, to "give her a minute to think before she acts" The main side effect, he said, was tiredness. At this point, tiredness didn't sound like something bad.
Now I'll stop her and answer the critics that are in my head, because they speak to me louder than anyone else does. Why give Janey medication? She already takes some, why give her more? Why not try something else? Aren't I doing some kind of experiment with her, using drugs at such a young age? Why can't I find a behavioral way to manage her behavior? And the underlying voice, the mean one, saying "What kind of mother are you, not to be able to handle your own little girl and to just turn to drugs to calm her down?" Well, voices of dissent, I invite you to read a few entries of this blog written when Janey is at her worst. This isn't annoying behavior. This is life-threatening behavior. If unchecked, I think Janey could honestly seriously injure herself, or others. At the very least, she isn't learning or thriving or having fun or being really anything a child should be able to be when she is hysterical, furious, lashing out, crying, not sleeping, for days on end. The most powerful argument I told myself---what if all of this was part of a "strictly medical" problem? What if I decided, because of my own beliefs, to not get her help with that medical problem? I think few people would support that. In fact, if that failure to get her help resulted in some dire end, I could be in major trouble for NOT getting her help. Why is it that because autism and the mental health issues it sometimes creates are not considered "medical" problems, getting medication to help them is often seen as giving up, as bad? I don't know, when I think of it that way.
Anyway, the medication has had mixed results. The very first day she took it, Friday, the result was sleep. Sleep most all day. I sat next to her all day, making sure she was okay otherwise. I think she'd been operating on a huge sleep deficit---I know we were. She slept Friday night fairly well too, and Saturday, slept much less (I had read the tiredness usually wears off quickly) and was generally in a better mood. There were still outbursts, but they were muted. Sunday, yesterday, was the huge big day for us. Tony and I took William to college (and a huge shoutout to him here! My baby boy, in college!) and Freddy watched Janey for eight hours. If Janey had not been a little better due to the medicine, I would not have left Janey with him, and I would have missed seeing William off, as I've missed so many milestones in his life. I'm very glad I was able to be with him. And Freddy's report on Janey? She was "great". She did sleep a couple hours, but those hours were made up for last night, when she was up from pretty much 1 am on. So not such a great result from the medication in terms of regulating her sleep. As I write now, she's been napping about an hour also.
I'm not sure if this medication is right long term, but we had to try it. The psychiatrist mentioned that in the mid-term future, we will probably be looking at mood stablelizers for her. I know what that means. I know children are no longer diagnosed as bi-polar, but if they were, I know Janey would be so diagnosed. Her cyclical highs and lows are very, very, very pronounced. I know, from a cousin and a friend's husband that are/were bipolar, or manic-depressive, that it's one of the closest to being purely medical of the psychiatric diseases. It is not treatment, well anyway, without medication, from what I have seen (and they were both severe, severe cases) If Janey is bipolar in addition to her other challenges, I will welcome medication at the age that becomes appropriate.
And so we go on. We are trying. I don't know if I am doing the right thing or not. I never do. I only know I have to try, to try to help Janey live a decent and meaningful life, and to stay alive myself as I do so.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
8 comments:
I think there are right and wrong ways to approach medication and I think you are doing it well. Its not the "let's give my kid something, anything to make them manageable". Its weighing pros and cons and deciding for yourself- I think she does need it, you all do.
Actually I do have experience with bipolar, my husband was diagnosed over 10 years ago now. The medication made a huge difference (I totally mean we would not be together now if he were not medicated). Initially he was on ani-depressant and mood stabilizer, but as time wore on he was able to wean off the anti-depressant. He tried to be off the mood-sabilizer but went back on his own will- he found his mood just swung too wildly and he couldn't control it by self-control alone (he did try). Now I'm telling you this because this is a non-autistic man who couldn't control it, even though he really wanted to. Give the meds a chance, maybe she really does need it.
I did read there is a link between bipolar and autism. Hugs to you.
I truly appreciate you sharing that. It made me feel much, much better, about a lot of things. My cousin who is bi-polar tried three times to take his life---and was very, very nearly successful the last two times. He's a brilliant man with so much to offer, and he can't control the moods, the swings. Your husband sounds like the same kind of man, and in fact most people I've met who are bi-polar are amazing people. When I am thinking rationally, I feel okay about carefully considered medication. I wouldn't be alive without replacement thyroid. William would not have been alive to go to college tomorrow without the medications that saved my life when I was pregnant and near death from pre-eclampsia. And if medication can make the difference between Janey living a good life or a life that I don't think anyone could call good, then I need to be open to that. You are such a wonderful writer and friend---you helped so much today.
I like Sophie's comments so very much about your reason for trying the medications being for the right reasons. When Janey's life--and YOURS--reach such a state, thoughtful, sincere effort to find some kind of solution seems to me to imply a "trial" of many different types of things. Since the cause of the outbursts is not known, how can one say that it might not be a medical reason? How can it not be said that MAYBE it IS something medically or chemically that is missing or needed, and that a particular medication might not be providing something that is exactly what is needed. I know you wouldn't try anything without paying close attention to the side effects and the results, but how better can you find answers than to TRY something? As you said, Janey is NOT able to accomplish anything positive when she's in these moods (and neither are you) so I think you have every right AND responsibility to TRY whatever may have worked for others.
Suzanne, I have not lived your life but I do know something about a child with mental illness. My son was diagnosed with schizophrenia at 16 and committed suicide at nearly 19. He had been a lovely creative and very gifted child until puberty although looking back, he was very different in some basic ways to my other two children. He was VERY hyper active as a child and and had very little impulse control all through his life...none really. His deterioration into the illness happened at puberty. I write from the point of view that we were not legally able to have him medicated during his illness as he was ' not a danger to himself or others' -until he killed himself, and under the law he was allowed to refuse medication. He never saw himself as sick, and insisted that everyone else was. Schizophrenia is also one of the more medical conditions although the efficacy of medication is much less universally successful than with bi-polar. What I am trying to say, is, had I had a crystal ball and seen the endpoint of the illness I would have moved heaven and earth to have him at least tried on meds. So, yes as a mother in a somewhat similar position, be assured that you are doing the right thing here. Your grace as a wonderful parent to Janey ( and Tony, too, ) shines from every single thing you post. I so hope for some more peaceful waters ahead for all of you.
My husband and I were both moved to tears by what you wrote, Grammacello. You helped us more than you can know to feel peace about our choices with Janey. I will think often of your son, I know.
Hi Suzanne, I just found your blog and this, my first entry, was pretty powerful. My son, also 9, is on the spectrum and we, too, tried everything possible before entering the world of allopathic medications. I was diagnosed with ADD as a child (1977) and it took my mother 7 doctors until she found one who didn't reflexively reach for the script pad. I spent years on the Feingold diet which worked well for me, but did not work for my son.
In the end, we moved towards allopathic medications for some of the same reasons you cite, but primarily because the behaviors (and it sounds like my son is not quite as far along the spectrum as Janey) were preventing him from living his life in a real and meaningful way. He was not connecting with his peers, our house was in constant emotional upheaval, and we spent most of our time policing behaviors and bracing for the tantrums. We have, at various times, had to have conversations with professionals about how to deal with 911 crews, whether to hospitalize, etc., although we've never quite gotten to those extremes.
I say all that because the medications helped enormously. The one you have started Janey on, if it's the same blood-pressure/sleepiness one my son is on, has helped a lot, especially with the aggression. It did take some tweaking though, and, since the dose burns off quickly, he ended up on half a pill three times a day for stability. He's also on other meds, and the combination has enabled him to function far better in this world and has enabled us to do things like take our first family vacation to a non-family destination in two or three years.
Finally, on sleep, we got his initial diagnosis at the Lurie Center and perhaps Janey sees the doctors there. It's a great support for kids on the spectrum. One of the doctors there told us early on that we can give our child melatonin to help combat the sleep issues, and that has brought an enormous amount of peace to our home because bedtime no longer takes 3 hours.... we've switched him to a sustained release, and that stopped the 1/2/3 AM waking. The doctor told us to start with 0.5 mg for three nights. If the child is not asleep in about 30 minutes, increase by 0.5mg and go another three nights. Don't go over 3 mg without going back to the doctor.
These lives appear to have chosen us, but we do the best we can within them. I would encourage you to view the medications as a small part of the big picture, and a part which may enable Janey to have a happier life with closer relationships and less struggle.
Peter
Thanks so much, Peter, for your very helpful thoughts and experience. So far, Janey's reaction to the medication (Tenex) sounds very much like your son. Actually, we are right now on day 2 of our own first attempt at a family getaway (not really a vacation, but a start!) and Janey is being remarkably better than we expected her to be. Still not sleeping, but based on what you and others have told me, I think it's time to try the melatonin. I've been thinking of it for a while, but somehow now that Janey's other behaviors are a bit more under control (and I'm knocking on wood saying that!), I feel ready to work on sleep.
I love what you said about the medication being a small part of the bigger picture. That's a very helpful way to think of it. As you said, this life has chosen us, and it's up to us to figure out a way to make it the best life possible with the parameters we have been given.
I look forward to talking with you more. I'm glad you found the blog!
Trying is all we can do! You are absolutely doing the loving thing, you are trying to improve the quality of her life, maybe even better health! There is always a reason for a child lashing out and not sleeping through. And if it is something simple as her body missing something and finding what can help her, why wouldnt we try? Hope Janey finds peace with her body and mind soon. Hang in there! This has to be a phase. Everything is a phase. Nothing lasts forever, isnt that the truth?
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