Saturday, August 16, 2008

Who is medicated?

I chanced upon a post by the excellent Kristina Chew today, that referred to her son Charlie taking his Medication so I quickly clicked on to the link and found out that Charlie is on the same meds as Bratty.
And I felt validated.
You see, I always feel a bit guilty about Bratty's medication. When a parent is having trouble with sleep issues especially, I want to try to help and recommend things we tried that might work for them. But the truth is, we didn't really get a good night sleep until Bratty started on medication, this time last year.
The short story is that she was no longer herself. Her anxiety, frustration and obsessive compulsive behaviours had become so intolerable that we were in danger of breaking down as a family. And when she was angry she got violent. We were living in fear of her getting upset and it was horrendous. A very big part of the problem was communication. She didn't have the words to describe what her problem was (usually something to do with change) so she would hunt me down to scream at me until I fixed it. And it was a very hard cycle to break. The more she screamed the more we tried to do what she wanted.

Now when you learn about ABA they teach you this stuff about how the consequences control the behaviour. And as parents we have to decide whether we are going to give in straight away, or not at all. It's like whether you are going to be a coke machine, or a slot machine. When you put a coin in a coke machine, you expect a coke to come out. If it doesn't, you might bang on the side, or even give it a bit of a shake. But you rarely give it another coin.
A slot machine is different. A slot machine is programmed by an evil gambling corporation to pay out sometimes. It actually rewards your persistence by letting you put a few coins in, then win. Then a few more coins, then another win. Until you are sitting there feeding it coin after coin only pausing to accept the wins before starting all over again.

Compare this to a hassled and tired parent in the supermarket with their kids. As soon as you get in the doors, the kids see a snack, toy or DVD that they want and they ask for it. Coke machine parent says YES. Puts it in the trolley and completes shopping in record time. Slot machine parent says NO, kids say can we can we? Parent says no, kids say: Can we CAN WE! and then continues to nag from trolley all the way around the aisles until harried and hassled parent gives in, gets the goodies and then stops by the liquor aisle to drown out the pain.

Of course, SuperParent might have landed in your local supermarket in a lycra jumpsuit and pulling off their helmet says to their kids "NO!, you cannot have a treat, Have a sandwich back in the car!"

And the kids will go along with that, because they know that last time and every other time they played "can we can we". They lost. The coke machine didn't pay out.

The moral of the story is, decide if you are going to give in or hold out. And if you decide to hold out, be prepared to go the distance as the reward will be sweet.

Well Bratty can go for 2 1/2 hours. She can scream so loud you have an actual ringing in your ears, like after a concert. She used to sleep in our bed (not our idea) and would kick us both when she wasn't getting her way. I used to put her in the car and drive up and down the freeway with her; we got stopped by the police once but the young guard wasn't going to mess with the crazy lady in the dressing gown, so he waved us on.
We got some help from a young keen behaviourist who recommended Mark Durand's book "Sleep Better". I read it and after doing some charts I realised I shouldn't be doing anything "fun" during a tantrum so I stopped taking her for drives. We bought a double bed for her room in a similar style to ours and put all our bedding on it. And I started sitting up with her in her own bed until she fell asleep. That is where this blog was born after all; in those hours on the laptop. And when she was asleep, I would creep out, one toe at a time, freezing if I thought she had stirred.
We used melatonin to turn on her sleep reflex, and a weighted blanket to make her feel like our weight was still over her legs.

But she still didn't sleep through the night. And when she woke up, she screamed.

There is a reason they use sleep deprivation as torture. It works.

When the neighbors started knocking on the walls (to tell us what? that she was screaming?)
I used to go insane with anger. One night it went on and on and I ended up sleeping in the car with Bratty. And the next day I was like one of those people you see on Jerry Springer or Jeremy Kyle; screaming like a harridan at the Pig in Knickers next door.

One day, P.I.K. actually banged on the wall at lunchtime; because Bratty had been squealing over a video and I put on some Cuban heeled RM Williams boots and danced a Tarantella on the (wooden) landing.

I was seriously on the edge.

And then we got help. A psychiatrist visited us on referral and after assessing Bratty we started (after a few other tries) on Respiradone.

As Kristina explains on her excellent blog: "Risperdal* can now be used to treat aggression, “irritability,” and “deliberate self-injury " And “it has been shown to be beneficial in treating the associated behavioral disturbances that can interfere with school, learning and family life.”

Family Life? That's us then.

So there is my guilty little secret out in the open. There are side effects. Along the way Bratty gained a lot of weight, then lost it when we changed meds.
We were starting to reduce her dose considerably after she changed schools. Thenew school's structure and organisation seemed to calm her anxiety and she was blossoming. We were down to half a tab.

But then the holidays started and life went to hell again. So we upped the dose.

One more week until school starts and I can start looking out for any changes and maybe start chipping the corner off the orodispersible tab again. I don't like medicating my daughter. So I do want to reduce the dose. And with her new school placement, that could be possible in time. Which would be nice.

But the truth is that someone in this house was always medicating. When Bratty was at her worst, Mr Hammie and I were getting through 8 or 9 bottles of wine per week. Sometimes more.
I would have a couple of glasses every day. Mr Hammie considerably more. And on weekends, there was more.
It was the only way to dull down the constant anxiety and tension in our house. Because if Bratty wasn't screaming then she was probably about to.
And it was a good way of sleeping through a mild tantrum.

It was not healthy, but as a Special Mum friend of mine once said as she was doing her not inconsiderable bottle re-cycling:
"at least we're not on anti-depressants".
hmmmm.

I am pleased to say that I cannot remember the last time we had to go to the bottle bank.
Mr Hammie doesn't drink at all anymore. He has a big bowl of icecream and fruit in the evenings to deal with the sugar cravings. And he has never looked better.

And I am down to one glass a day; a little more on weekends.

I did over indulge a week or so ago. I was feeling very depressed. Bratty was bad, we had increased the meds but they hadn't kicked in. And I had one of those moments when you look at how developmentally delayed she is, and I just fell into the black hole.
Drank a lot, cried myself to sleep and in the morning I felt dreadful.

Alcohol is a Depressant.
You can use it to dull the edges and relax after a stressful day. In small amounts. But it will not cheer you up.
For that, you need a clear head.

I don't recommend medication is a route that everyone should take. We wouldn't even consider it for Boo.
It. Is. Not. The. Cure.

But it has helped us become a stronger and happier family.

xx

* Risperdal is the brand name for risperidone, in our case an orodispersible "quicklet".

21 comments:

Nick McGivney said...

Want to comment. Want to say so many things. Don't know what to say.

Thank you.

K.Line said...

Let me start by saying that you are an excellent parent, that's for sure, and you have only done what is most reasonable to work in the context of your whole family. I know from wine as object of self-medication. When my child was young - and I was hideously sleep deprived (oh, and she would scream for hours at a time) - I drank/ate cookies just to get from point a to point b. That screaming child / exhausted combo is a special kind of torture and I have nothing but sympathy. I'm sure you are on the right track.

Pearl said...

I am sure you have probably heard something like this before, but would you feel guilty if you needed to give a diabetic child insulin? Probably not. So, dont feel guilty about giving Bratty medication that is helping her and the rest of the family.

You said yourself that you are a stronger and happier family because of it, so dont feel like you have to justify your choices to anyone, even yourself.

Hugs for you =)

cybill said...

Hammie, we do what we have to do! No time for guilt, if giving my child some medication to make them sleep and feel better and restores the family to rights - hell, i'll do it. I heard some excellent advice once, that I like to claim as my own "The only way over it, is through it". Keep going.
Also your point about the coke vs slot machine is very timely for me - I must stop paying out!

Sister Wolf said...

This post evoked vivid memories of the battles that rocked my house for years. No one understands the full meaning of the word 'desperate' like the parents of autistic kids.

I worry about meds too, but if they help a child to calm down enough to go to school, and to interact without screaming their heads off, they are making life more livable and create a path toward joining the rest of the world.

What is the divorce rate for parents of kids 'on the spectrum'....something huge, right?

Unending stress is murder on the human organism! Whatever gets you through the day without ruining your liver or impairing your judgement is good medicine for you.

Things will get better. And this post belongs in your effing book. xoxo

Skye said...

Sleep deprivation is truly torture, and anything that can help you all survive (and thrive) cannot be a bad thing.

I just want to say how insightful and fascinating your blog is, I love the way you write!

Casdok said...

It is a hard decision, and when i finally gave in i wondered why i hadnt done it sooner.

Cathal's Mammy said...

What can I say Hammie, you are a great mammy, and I look up to you. If we could all be half the mammy you are, we would a live in a pretty good place. Take it one day at a time, and if that day is too tough, take it one hour, one minute at a time. And as for the meds, if it makes you a happy mammy, and makes Mr.Hammie a happy daddy, and makes Boo and Bratty happy kiddies, then it is well worth it...

The Seeker said...

My dear I'm soooooo sure you do what's the best for your kids and the whole family.

Sometimes we have to take difficult decisions (I know, I've been there with my parents) for the sake of them too.
Being without sleep it's violent and I'm sure your child was suffering too.
So it's not time to feel guilty, it's time to be logical.
You only can help your kids if you're ok, if not... who else?

Also, I would like to call your attention that drinking alcohol, in my umble opinion, it's worst than to take an anti-depressant, because alcohol has more dangerous behavior effects.

You say "it has helped us become a stronger and happier family" so what you're doing just HAS TO BE RIGHT.

Keep going darling!!!!!
Your path is tough so don't torture yourself for trying to make it easier for everyone.

Sending good vibrations with love.

xoxo

The Seeker said...

I just read your comment in my post.
Thank you so much my dear for your words. Tears come to my eyes, but in a warm way, thinking of what you were telling she would remember.
Thank you my darling for your support!!!
Love
xoxo

Maddy said...

Two hours was my limit, then I'd have to call in the cavalry or wear ear-plugs.
Best wishes

Hammie said...

Nick; get back to me. Send me a song choice.
K-line, thankyou. Only parents know what it is like to be truly sleep deprived. When was the last time you stayed up (outside your own home) past 1am by choice?
Pearl: good advice. I will remember it. It's just that insulin is pretty black and white. Risperadol has so many shades of grey.
Cybil; thankyou too. I once told a relationship counsellor that I thought there was no such thing as a brickwall. You have to blast through it somehow. It makes me an intense person. But I can see it is a strength
My sisterwolf: Yes, (see above comment) I think it is over half (which is huge for a catholic country) But we seem to have made it.
and again I say:
"she gets me".
xx
Skye: thankyou. Again a mother knows. I love your blog too!
Casdok: thankyou,. We thought that too. But we had to get to that decision alone, no one pushed us.
Seeker, my Bratty is dark haired, long eyelashed and smells gorgeous in the morning. I forgive her everything when she is asleep. That is the image I will have in my mind when I am old. She will always be my baby.
Maddy, I have since learned to wear ipod earphones. She tolerates that. xx

Emily said...

Your choices are yours to make, completely based on your experiences. It's going to sound like a judgment, but it seems like your choices are good ones from the view on this side of the pond. When it comes to sleep, I'd long for the days of paregoric in yours situation. So I'm kind of draconian that way. Mama needs sleep. Our kids sleep like they're in a coma, so we don't have this kind of issue. Anxiety, mercuriality, probably depression will be our medication maladies of choice.

E

kristina said...

this post rings 110% familiar.

just not so much of the bottles but the Mark Duran book and the car and those d**d neighbors.

dance, and sleep, on!

rm9 said...

I echo Nick. He sums it up for me. XX

Sal said...

Hammie, every time I start writing something in response to these heartbreakingly honest posts, it sounds hollow and idiotic and unhelpful. So I just want you to know that I'm thinking of you. And I'm sending you transatlantic hugs. Pretty much nonstop.

drwende said...

If Bratty had been born without a foot, would you hesitate to get her a prosthetic one?

Medication -- used properly and cautiously -- is prosthetic brain chemicals for people whose bodies don't produce the right stuff automatically.

While I think it's possible to go overboard and start medicating away normal variations in behavior, it's equally reckless to refuse to medicate conditions that are mostly medical.

enc said...

What difficult decisions and challenges you face every minute of every day.

I admire you.

Hammie said...

Dear Anonymous, I have recieved your comment and I will be happy to run it if you will firstly, create a sign on name so I can identify you in future; and if you say whether you are a parent or a professional.
Children with autism tend to live in private homes, where there are challenges and priorities beyond the laboratory conditions of an ABA clinic or school.
The "going to the store" analogy demonstrates how most parents of TYPICAL children go to the supermarket with their kids, as observed by this scientist. It is also keenly observed by most marketing and merchandising companies, hence the placement of said DVDS, sweets and snacks in the strongest position for "nagging" or "pester power" in the layout of the store.
As I said the "super parent" will have set the boundaries and parameters of expected behaviour long before it came to doing a general shop with their kids; hence their immediate acceptance of the NO!.
Many ASD parents will have learned to do controlled shopping only as you describe, and save their "big shop" for when their children are in a school or other care setting, or they shop online and have it delivered. I would never attempt a big shop with both my ASD kids, and if I am alone without anyone to watch them, I grab the minimum at my local service station, drive through.
Any visits to the supermarket with kids will mean a structured "deal" being done before hand, and the goal is usually more about going for a "good" walk (straight back, no dragging or pulling), or reading a list and learning simple money values and self scanning the few groceries, or eye contact and greetings; usually nothing to do with the actual provisions being bought.

As for the "sleep" programme. I consulted with my local health service team for over 2 years for help with my daughter's behaviour. Repeatedly suggesting that we needed some kind of in house help. I briefly considered going to the States to attend the C*rbon* Clinic, but simply couldnt afford it; and could not work out how to replicate and then fade the Clinic conditions while maintaining the behavioural treatment plan we would hopefully adopt.

You see, as a family we had tried standing up to her, and as I said in the coke machine analogy, most kids would give up when they saw that you were going to hold out. They stop putting the coins in, and banging the side of the machine, and walk away.
Often you are not up to the fight. Someone in your house may have a job they have to get up for and do well to put bread on the table, there may be another child who is very distressed by the Tantrumming child's behaviour, in this case our son who also has ASD, self harms when distressed, (hand bites till his hand bleed) and repeatedly says "Bratty is crying".
We live in a small house on a new estate where the developer did not consider to make the walls very thick between rooms, or indeed each house as our houses are terraced (joined together), and our very very unpleasant neighbors would bang on the walls throughout our daughters tantrum.
Yes, I see what you mean about the car; but my daughter found it rewarding to be driven up and down the highway; I got that from the charts. So when I had reached the point of breakdown (as had my husband, son and neighbors) I would get in the car, in the driveway and stay there. So I was the only one who had to listen to the screams as the car is a lot more soundproof than our flimsy house.
I don't what else I was expected to do. I would never raise a hand to my child, and there is simply no way to turn off the sound in such circumstances, short of gagging her. So the car was the only solution.
We have applied for a grant towards having a room renovated and insulated. Our wooden floors suited us when the children were incontinent (a long process) but tend to carry the sound. We can then start to create a safe room for "time out" without deafening everyother occupant of the house.

Our daughter was also in a state managed 6-1 special needs placement at the time of the medication. Where her behaviour was very poorly managed and constantly given in to. Coming home to find Mummy to be the strict one was very confusing and inconsistent for our girl. So she saved her worst blow-ups for me.

In her new ABA school which is supervised and consistently managed, her anxiety, her obsessive compulsive tics and behaviours and her tantrums had all reduced, both in intensity and frequency (I charted) so I began to reduce the dose.
The medication was never intended to be a substitute for good parenting and behavioural management. It was just to give us a window of relief, to help take control again; and to frankly, save our marriage and keep me out of a rest home or hospital.
Now that school has returned and we will not have more than a 2 week break for the next 11 months, I can imagine reducing the medication to the point of phasing it out altogether, in conjuction with some treatment plans to be introduced as part of her individual education plan. The difference it makes to an active mind, to be challenged and interacted with all day, cannot be underestimated. The children are only back at school 3 days and already, things that caused major melt-down a week ago, can be worked out in a matter of minutes.

As your lecturer should have told you in University, a good Behavioural treatment plan always takes into account environment. If there are factors in that environment that will affect the implementation of that plan, then they have to be taken into account. If a family cannot sustain a suggested course of management, then you have to adapt the plan; if the child is to live with the family.

That is why experience behavioural experts always suggest in lectures, "make up your mind when you put the key in the door, either give in straight away, or don't give in at ALL."
I went up to one of these lecturers (he has a clinic in Rockaway NY) after a seminar and asked "what do you do if you made the wrong call?, if you thought you were able to hold out, and 2 1/2 hours later you found yourself hiding under a blanket while your child roamed the house, ready to scratch your face or kick you in the jaw, because they couldn't get you to put their video on 20 volume at 3am?"

His answer, "Then you need help".

(no shit Sherlock!)

I take it from your comment and use of idiom, that you are resident in one of the lucky states where behavioural intervention is state sanctioned and provided for by law, in the child's home.

This sadly is not the case in the Republic of Ireland and it has taken me 6 years to get my children into a recognised ABA school.

Help in the home will be provided unofficially as part of that. And any treatment plans will be developed in consultation with me. However, There is ZERO structure in place for home based overnight treatment plans. And short of being selected for a reality television "supernanny" type show (I have applied) I don't see the funding or structure being provided for in the near future.

The solution offered is one of residential care, and as we found when we investigated short term residential respite, there is no training in ABA or behavioural management, and the situation worsens.

I love my daughter. I want her to live in our family house with her Father and Brother. I did not take the decision to give her liver an additional chemical to process lightly. I can assure you of that.

If you are ever in our neighborhood, and interested in doing some "pro-bono" work, then perhaps you will look us up. Until then consider this
"Before you judge me, walk a mile in my shoes", At the very least you will be a mile away, and have very very lovely shoes.

xx






I take it from your comment to me

Amanda said...

Our daughter was on Risper for two years and it was the best and at the time only decision we could have made. And the hardest. Medication made it possible for us all to sleep, for her to begin to engage with the world again, to learn and function and to take on the positive behaviour support strategies that we has been trying to teach her.
I hate that parents have to justify our decision to help our child in this way. But it seems that as soon as the word 'medication' is uttered, judgment follows soon behind.
If those who judge so easily did have to walk a mile in our shoes, they'd soon get blisters. Not to mention our kids - because she was not a happy child, and she is now. Happy, secure, functioning at school, and now two years later weaned off the meds.

pam said...

im sorry that there was someone who thought u could have done better for gracie. I know you couldn't have done any better for her, or for the rest of you xx