Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts

Monday, September 19, 2011

The Way You Wish

I sat at a parenting support course this weekend. Learning ways to understand grief and anger and familial stress so that one day, should I be called upon, I too can support someone else when their world has just taken an unpredicted turn. From bad birth outcomes to startling diagnosis further down the track. Everyone has loss. Loss is loss is loss. I may not know where you're coming from, and you can't possible know my loss, but together, our losses are losses. The depth, the pain, the consequences are vast.

One of the things I found myself repeating, in almost every group work assignment was: I take a deep breath and I parent the way I wish I had been parented. And a few eyebrows would raise and someone would eventually come over at a break and ask what I meant by it.

I'm not shy about admitting my passion for Attachment Parenting and the belief I have ingrained in myself of Gentle Parenting. I began reading about Attachment Parenting when trying to become pregnant. I knew there was MORE out there than the shit handling of my own life. I knew there had to be a way to raise a kid that didn't involve him contemplating suicide as a teen.

And there it was. And it lead to internet searches for more information and more forum readings about Gentle Parenting. Not to say that I'm perfect and I strive to be flawless, but I have worked VERY hard over the past year and a bit on mindfulness and being present. I did a 19 week (57 hour) group course in Anger Management because I wanted to learn how to feel something. Normally I would start to feel something, anything, freak out and push it all down until it would just blow up.

And it was a common occurrence in women. You're so primed to look after others that it can feel strange to want to look after yourself, especially if you are a product of domestic violence or neglect. (Especially the neglect part.)

This is stolen from LLL:

"Initially, the phrase "gentle discipline" may evoke mushy, weak, absent-minded discipline. It may remind you of families with no boundaries, children controlling the parents, or selfish, impulsive children that no one wants to be around. Or perhaps you might think of parents afraid to say no, afraid of their children's tantrums.

This kind of parenting does exist, but it is best described as "permissive parenting." Fortunately, gentle discipline has nothing to do with this ineffective and problematic style of parenting. Gentle discipline is strong and effective."

Gentle Parenting isn't about kids running wild and manipulating parents. All kids run wild. And all kids do eventually learn how to manipulate the people they love the most. It's how we, as evolving creatures, work. But, gentle parenting is about putting the need of the moment ahead of MY need to feel validated and in control of the situation.



So, my 2 year old spilled pricey unhomogenized milk allllll over the floor. I wanted to scream, to slap her. To yell and throw the milk container at her. Those were the feelings I had. Right or wrong, that's the way I was working. But, I took a breath and asked: How would I have wanted someone to love me and discipline me?

And that's when I really understood what I was doing. And I use it in every situation. How would I like to be treated that I never once experienced? Kindness. Tolerance. Patience. It works with Adults and truly, ourselves.

Those 57 hours were some of the hardest I've ever experienced. Facing grief. Facing the past. Accepting and acknowledging neglect. And then finding the peace to want to move forward.

"Does it work?" was the most commented statement in response to my Gentle Parenting statements. Does it work? Sometimes. Yes. Sometimes. No. But it is ALWAYS keeping myself, my child and the situation benign and not dangerous. If you're hitting your child, you're not doing the right thing. If you're parenting by threat of physical violence and put downs, it needs to stop.

And that's before we throw in the extra demands of parenting with special needs.

Yes, your child has special needs. Yes, life is hard. I know how it can be. But, it's not ok. Not that all traditional parenting ends in violence. But, a lot of it does. Putting hot sauce on your child's tongue is abuse. I hate to break it to you.

Putting hot sauce on the tongue of a child wit Autism is abuse that needs to be reported. Not that this came up at my parenting course, but it has appeared in some of my internet searches on Autism and Discipline.

Imagine yourself as the small child. The walls are endlessly tall. People tower over you. They hold all the power and control. You are dressed, fed and do what people tell you to do. You act out because of whatever is going on in your insides. And someone hits you. Or threatens you. And tells you they're doing it because they LOVE you.

Now, think about how that child would want the reasonable, sane and loving adult to act. It's not a wish for permission to be a hellion on earth. But it's wanting someone to love you and set boundaries that are fair, proven and gentle. Kids don't stop hitting because you hit them. And they won't stop yelling because you yell at them to shut up.

Good places to start are with Dr. Sears and Wikipedia. This Blog is a nice place to visit as well. You can learn a lot here. And, though I do not subscribe to a religious way of parenting, there are always good insights here.

No, you don't have to eat organic or hug trees. You don't even have to want to give up driving a SUV. You don't have to breastfeed or want to breastfeed. You don't have to eat macrobiotic or cloth diaper. You don't have to wear your baby or home school. And, especially if you're like me, you can openly dislike The Secret, the Law of Attraction and all that bullshit. All it takes to parent peacefully is a commitment to sane, gentle discipline that respects the people involved.


Kids love without boundary. And they love you. Please love them.

Monday, September 12, 2011

Extra Support

I need to find a pharmacist to bother. My own is fantastic, but she is very busy running the place.

She told me that it's generally advised you do not mix melatonin and fluox, or Prozac to the world, as they work in disharmony with one another. Not that there are side effects to mixing the two, but because the brain works hard to synthesize the serotonin into melatonin. Which is why people with insomnia often sleep when they start a SSRI antidepressant. (Which never worked for me, so I take a different kind of drug to induce sleep.)

There is a natural product called 5-HTP which is a natural form of serotonin. Solgar, the vitamin people, have the product on the pharmacy shelves. I don't know if it's chemist restricted, as I haven't seen it in the grocery store, but it seems to help with irritability and sleep problem. It's also suggested for those who struggle with mood disorders.

And yet, melatonin is barred from general consumer purchase?

I'm wondering if you can supplement 5-HTP instead of the melatonin and whether you could safely take it with Prozac, or instead of the prozac altogether. Dosing for children may be difficult to decipher, but it may be worth the hassle to avoid a) the stigma of having a child on an AD and b) the increase in self-harm behaviours in kids with autism.

I think I need to do more reading on what triggers and supplements these two hormones naturally. As anxiety is a learned response to stimui, therapy and medication are probably still needed, so it seems the fluox will still be needed, however, if natural serotonin works in mood disorders, it might just work to kick start the anxiety relief.

The 5-HTP is cheaper than the melatonin, if you include the rx cost, and it's available without issue. I wonder if I bought my pharmacist some nice chocolates whether she'd call the paed and discuss it with him. Not that he's anti-natural therapy, it's just that he's so busy with oncology that I don't want to bother him, especially if I don't have the knowledge to back up my desires.

Argh. Think. Think. Think.

Sunday, September 11, 2011

Melatonin

This is mainly written as a resource for parents in New Zealand looking to start Melatonin in their child.

Our super brainy oncologist Paed (honestly, I'm not sure how we got blessed with him, but sometimes prayers get answered) often uses a drug called Nausicalm (Cyclizin HCl) in his cancer patients to stop vomiting nausea, however, it can also be given to children ages 6 to 12 in 1/2 tablet doses as a sedative. However, sedation with this is generally restricted to acute cases of distress, or, when the shit hits the fan and your paed is away. This is what the GP prescribed. I found it generally only effective on an empty stomach and that the full adult dose was needed (50mg) to stop the intensity of night time anguish.

It was suggested we look into getting Melatonin for Soph as it is a synthetic version of a naturally occurring hormone in the brain. It's something you can easily buy in the US for under $10 a bottle.

However, in NZ, it is restricted. You need to get a script. I'm not sure if it must come from a specialist, but my pharmacist said that most GPs would be equipped to write the script, so I assume it is not specialist only.

30 tablets cost $18.90 for 1mg. However, most people need more than 1mg, with children reaching accumulated doses of 10 to 12mg per night. So, if you can get the script from a hospital physician, this will reduce the cost as you do not pay for the Rx.

I'm unsure whether you can ask for repeats in the script so you do not have to go back to your doctor monthly.

On the first night, 1mg made Soph super drowsy for about 3 hours before she fell asleep. Last night she was up until 10:30pm, as it had no effect.

You can see this becomes a rather expensive venture when one considers that a dose of 5mg a night will last 6 days. You would be spending $56.70 a fortnight to sustain that dose.

My script tells me to increase dose to 2mg in one week should the initial dose fail to sustain a sedative effect.

I suppose one might apply for a child disability payment for the medicine as it is not covered by Pharmac and most likely will not be refunded from Southern Cross.

You can also try www.cherryvite.co.nz for a natural occurring source of melatonin, the tart cherry. Grown and made in the South Island, you pump 3 squirts of the cherry vite into a glass and take it at night. I have not had much success with getting Soph to take it, however, it might be worth a try for those trying a lower doses tablet and want to avoid the extra expensive of doubling or tripling a dose of tablet melatonin.

You can also get capsules if your child can swallow gel caps. However, it too is not cheap and it seems almost irresponsible for the govt to not provide children with autism or ADD/ADHD disorders with a relatively side effect free drug in favour of supplementing chemical drugs they've bought cheaply in bulk.

Friday, September 9, 2011

Parenting Eeyore

A long time before I wanted to have children, I dreamed up the most perfect nursery you could imagine. It was going to be in the inside of Pooh Bear's house. I was going to project life-sized images of Pooh Bear's humble abode into the room and get an art student to paint it all. It would be as though you walked out of your house and into the mind of AA Milne.

I bought old replica print copies of Milne's original drawings, treasured and revered. I touched the cover lightly most nights when trying to become pregnant (and trying to remain sane).



I was a Pooh Bear girl. I carried a larger yellow bear with me on holiday in Rarotonga and he came to many dr appointments, tucked into the back of the car, awaiting whatever medical disaster that was about to manifest. I had grown up on a serious diet of yellow bears. I did not consider him dumb, as many people often refer to him as, but that of a wise, mountain bound sage. Growing up, I had a wonderful Pooh Bear night light that played the Winnie the Pooh song. You twisted the honey pot to release the chimes. I had a Pooh Bear print pillow strapped to my bottom as I learned to roller skate and broke my tail bone.

While Tigger grew massively popular in the 90s, I remained true to my honey obsessed inner talisman. I was and am my own version of Pooh Bear.

However, I married my own version of Rabbit. And Rabbit didn't believe in setting up a nursery, too worried about the cost and whether it would impact the home's value. Over time I had accumulated various Pooh Bear toys, an entire set of characters in a garden theme released by the Shell station years before.

I made do with what I could, being on a tight budget. However, I knew my child was going to be a Pooh Bear, possibly a Piglet or a Tigger.


I hadn't expected Eeyore.



When she was a few weeks old, I would place her in the bouncer with the dangly toys hanging to encourage her to whack and kick them. My brilliant child had amazing hand eye coordination for someone who didn't sleep. At all. Ever.

I propped toys on the top of the dangly toy bar so they would look down and and her and she'd be surrounded by smiling faces, as my own was often covered in tears.

The one she took the most like to was Eeyore. She would smile to him and coo to him. I remarked that my child was an Eeyore, bound to grow up into a dark grey legacy of pessimism and stoicism. My supportive mother-in-law suggested it was because he had big, alert eyes. But I knew. I ruled my life by the wisdom of the Bear, how could I turn my back on the wisdom my daughter was displaying.



And she has always been an Eeyore. Contrary, tart, bitter for her age, afraid of emotion and easily embarrassed by them. She would accept life better if she were a robot, by her own admission, free of emotions and cares.

She carried that Eeyore around for quite a while until she developed her Barbie obsession. Once Eeyore went into the dryer and his mane frayed, she lost interest in him as he was now a bit more mad scientist than sad loner.

Recently we found the tropical holiday sharing Pooh Bear. When we moved from our large, warm designer home into the cold, barren and (I shall refrain from calling it a dump) certainly smaller home, a lot of our goods went into the garage, to be lost for years. Pooh Bear has now been brought into our active lives. He's had a bath, hung by his legs to dry, cooked many dinners and said many good nights, but the girl remains staunchly an Eeyore.



It's been a difficult week for us. In the morning she wakes, often happy and chattering away, but comes down the stairs to revert into an angry, contrary and anxious child. She screams and yells. Both parents desperately try to reign in any impulse to yell and scream. Both give encouragement to one another to push it down, take a breath and re-emerge patient, kindly, loving.

It is the way I wish I had been parented. The urge to smack, yell and kick are growing inside. It is all I know. This is a foreign territory. I have parented as a gentle, kindly, loving parent for so long, much to the amusement of parents who find gentle parenting a fallacy.

Biblical verses about rods and time-outs and how hitting did no one any harm get thrown my way daily. I find it irritating as I don't begin to preach to you about your downfalls as a human being, but it's fine to 'correct' me as you see fit. That's ok, you're going to die a horrid death in my next novel. ;)

I believe you can parent gently. I believe you can parent with an open heart. But I also realise you will, like I did this morning, hit a huge wall. There comes a point where you love your child but you don't like her right this second. When time-outs don't work as you don't have all the time in the world to address every issue.

When parenting a child with Autism doesn't work with your parenting style, or any parenting style really.



I shut down this morning. I just couldn't do it. My body hurt and it hurt to physically push myself down the stairs. And the child who had been happily chatting away to Pooh Bear and I was now a sulky, dark, angry child who refused eye contact and yelled.

I let my husband down. I just walked back to bed and covered my head. I was physically unable to do it. Emotionally broken. I tried to cry, to yell and scream but I was suddenly hoarse, unable to speak. I opened my mouth, pushed with all my might and nothing. I was robbed of motivation. I could't even force myself to get up to go to the toilet.



Eventually I was able to move. To shed tears of frustration. To realise that living with a child that is completely emotionally out of control is hard. Here we are debating whether to put her on an antidepressant and so many people have opinions. So many voices of dissent. So many 'I could do it better than you's.

Other Autism parents say we need more structure. Structure falls blatantly short when the child is stuck in a cycle of screaming and refusing to allow you in. But, I will try. Our house is a mess. It always has been. It's the coupling of people who don't mind mess with a child who constantly creates mess. I can tidy up only to find she's placed things back where she wants them.

I refuse to change my gentle ways. I refuse to parent opposite to my Attachment soul. But it is hard. All I want is to slap her face, send her to her room and throw away her toys. I feel it burning in my body. I feel my hand stiffen.

But I know what happened to the little girl inside me, battling her own demons. I grew to hate my parents, not trust them and seek ways to escape them. My house was more violent than a single slap every now and then, but one slap leads to the next. One moment of meeting MY need to hurt leads to more moments of choosing MY needs over meeting the needs of the family.

We are a broken family. Broken by anxiety, sleep deprivation and behaviours common to those diagnosed with autism. How is physical violence against one another going to replace, solve or divert any of the above? How is sitting on a stair step or naughty chair for 6 minutes going to change someone who is consumed by anxiety about death, monsters and failing?

Someone who sits in a classroom for hours pretending to be perfect only to come home, to her soft spot and lose her shit?

How does one get into the head of Eeyore and ask him kindly to melt into society? To be nicer to his parents? To accept the help around him?

If AA Milne didn't have an answer, I can't imagine how I'm to find one.