Friday, October 29, 2010

Book Review: All Cats Have Asperger's Syndrome by Kathy Hoopmann

I've referred to this book several times on this blog but I've never actually done a review. This post aims to change that.

When we were initially struggling with the Aspergers diagnosis for my eldest son, we jumped into a whole heap of complicated books. They were generally a good read but most of them were way too clinical.

Then I heard about this book and I decided to buy it off amazon without having even looked inside. I couldn't find it in any Australian bookstores though funnily enough, now that I know what I'm looking for, I've seen it lots of times.


First Impressions
I suspect that had I seen inside the book before I bought it, I might have had second thoughts about buying it but then, I would have been wrong. It's not just the covers that you shouldn't use to judge books by - sometimes you really do need to read them first.

At first glance, the book looks quite shallow. It's sort of like the famous "blue day book" except that all of the pictures are of cats - and I'm much more a "dog person".

The layout of the book is one big colour picture per page and one or two lines of text.

Read it through cover to cover and it's a completely different experience. Each page introduces a new concept or puts a different spin on an old one. It's just a line or two of text of text and a picture of a cat - so it's not detailed in any way but somehow between the line and the picture, you really end up thinking about what is being said.

The book is very linear though and each page builds on the others which precede it (you shouldn't start reading from the middle). By the end of the book, you have a firm grasp of the outward signs of aspergers and at least a general idea of what it feels like to have it.

You will probably have picked up a few good parenting tips along the way too.


Using the Book
My wife and I were so impressed with the book that we got our parents to read it too. It's amazing. We'd been trying to explain aspergers to them for ages and somehow this book is capable of doing it in 30 minutes,

My eldest son, who struggles with his reading but at 10 is just starting to read books without pictures, finished "All Cats Have Asperger's Syndrome" in a single sitting. It's easy enough to be accessible to him. It also provided an amazing opportunity to discuss how he feels.
In fact, I'd classify our conversation during and immediately after reading the book together as one of the most important conversations we've ever had. He really opened up.

I'd strongly recommend "All Cats Have Aspergers Syndrome" to anyone with aspergers in the family and to all teachers and practitioners who deal with children with Aspergers or High Functioning Autism. It's one of those books you simply must have available for discussions and explanations with parents, relatives and educators and it has amazing potential to get your child talking about how they feel.

All Cats have Asperger Syndrome is available on Amazon and in most good bookstores. There's even a companion book called "All Dogs have ADHD" which I haven't read yet but it sounds interesting.

Kathy Hoopmann's web site is here; http://www.kathyhoopmann.com/index.html

Honesty Clause: This wasn't a review copy. I went out and bought this book - and I'm very glad that I did.

Monday, October 25, 2010

Article: "Best and Worst Jobs for Aspergers Adults" on My Aspergers Child

I just want to draw your attention to a very good article

The article is called;

Best and Worst Jobs for Aspergers Adults

and it was published on the My Aspergers Child blog.

The article gives tips for aspie jobseekers and tips for parents with aspie children in the latter stages of school. It also contains a few good lists of the best and worst types of jobs for aspies.

It's well worth a read.

Wednesday, October 20, 2010

Get Away from Me with Your "Perfect Kids" - Part 4: School and Sports (Final)

School
I can remember taking my wife home from the school in tears because one mother had told us that she was in a panic about her son and thinking of pulling him out because he was only a level 12 reader. Our son was in his class too, but at the time, he was only on level 2.

It's not that the other parent was insensitive. She probably didn't know what level our son was on. The real issue is that parents of children with academic special needs shouldn't discuss their children's progress with other parents. There really is no comparison and it will only get you upset. Given time and resources your child will flourish. In fact, five years later, our son is just finishing up the diary of a wimpy kid - and he enjoyed it!

Unfortunately, academic talk is common at school while waiting to pick your child up. Sometimes it's better to stay in the car. Some parents delight in telling you all about their child's achievements and eagerly ask about your child's work. Sometimes it's genuine but often it's all about them feeling that their child is "better". Sadly, some people need to put others down in order to "build themselves up".

Whenever possible, make sure that you identify these types people and stay well clear of them. You'd be surprised at how much parent-talk transfers to the school yard. Other children sometimes quote their parents, "My mum said that I have to stay away from you because you're not very smart" or "because you get into trouble too much". It all impacts on the already fragile self-esteem of special needs parents and special needs kids. We don't need those kinds of friends and the less ammunition you give them (through conversation), the better.


Play-Dates and Outings
Once we arranged a play-date with another child who had aspergers. We were hoping to be able to provide our son with a good "similar" friend. Unfortunately this particular child was a "smart aspie", someone with Aspergers syndrome but without the ADHD and learning difficulties that our son has. The boy's special interest was Harry Potter and he'd read all of the books - our son by this stage had just moved up to level 4 readers. The boys had a good time at our house and they still play together occasionally.

Unfortunately, the play-date has never been returned and our son has never been invited to the other boy's house. At first I consoled my wife by suggesting that not all parents have play dates but this idea was shattered when she discovered that all of the other kids my son is friendly with have had several play-dates at this boy's house. It's just our son who is excluded for some reason.

Then there's the incident where a mother came over to where my wife and several other mothers were talking and invited all but one (guess who) to an outing. My wife came home shattered but worse... the next day our son came home from school with full knowledge that he'd been excluded because all of the other kids had talked about it.

The same thing happens at school with parties. Your child will know when they've been excluded. It's a good sign that you need to look for other, better friends with more open-minded parents. It's also important to try to establish a group of friends outside of school - that's where sports come in.


Sports
From my Point of View
Ok, this first section is a little off-topic but I think it provides some necessary background...

I've never been a big fan of sports myself. For a start, I've got low muscle tone. It's part of the aspergers condition. It doesn't mean that I can't be muscular but it means that my muscles aren't attached to my skeleton in quite the same way as other people's. They're too "floppy". When I try to work out, I'm more inclined to injure myself because my limbs tend to bend back further than other people's. I put too much strain in all the wrong places.

As a result, I've never been able to do proper workouts and I've never been a particularly muscular person. My unusual gait means that although I used to be quite good at sprinting, my general running ability was decidedly second-class. Then there's my co-ordination, or lack of it...

I could go on forever but I think that my feelings about sport are probably best summed up by a two minute scene from the IT Crowd" TV show. It's well worth a watch, quite funny but it struck a chord too. I was stunned when this aired because until then, I'd assumed I was the only person who felt like this.


Sports and the Perfect Kid
The real reason for the inclusion of sport in this series stems from my time as a parent with my son, then 5 on the school soccer team. It was painful to watch my son chase the ball around without ever getting near it. He was a tall boy for his age but even with those long legs, he just couldn't run fast enough.

Even worse though were the times when he did get the ball. At those times, the ball would hit his foot and it would be as if in slow motion. He'd look down and you could almost see him saying. "Ooh, what was that? It's a ball. I wonder where it came from". He'd look up to try to work out the circumstances behind the ball reaching him then, "People are shouting at me. What are they shouting? Oh, kick it? Where should I kick it? That way? Ok... ". I'd see him reach a decision and bring his foot back to kick the ball but by that time another player would have taken it off him.

The disappointment on his face was plain to see but as a parent I had to try to be encouraging at half-time despite the fact that it really seemed futile. It would have been ok if the other kids had been equally bad at soccer but unfortunately many of them were good, very good. Some of the dads appeared to be soccer fanatics.

As the season wore on, it began to get more and more difficult to get my son to complete the second half. He would stand around and kick the dirt, sit down on the sidelines or simply wander disinterestedly off the field. Who can blame him? To him, as it was to me, soccer wasn't a sport, it was a "standing around waiting" game - because he never got a turn.

The "icing on the cake" however came from the soccer hooligan mums and dads who started by quietly advising their kids at half time and then eventually began shouting out things like "don't give it to that kid!" I could see my son's self esteem crumbling.

We'd decided well before the end of the season that it would be our son's first and last season. We were going to have to find a replacement activity, one that didn't suffer from parent hooliganism and one in which everyone was accepted for who they are. To my surprise, scouts fitted the bill perfectly (so far).


The Series
This brings me to the end of the "Get away from me with your perfect kids series". If you've missed the other parts of the series, you can read them here;
I've covered a few common groups but I'm sure that there are plenty more. Keep an eye out because even the best groups turn bad sometimes. When groups stop being supportive, it's time to leave.

Article: My Story of SPD Through Poetry by Jennie Linthorst

I really have to say that I'm not usually a great fan of poetry - especially of poetry which doesn't rhyme. I've got a long history of writing poems though admittedly they've become quite sparse in recent years.

My poetry is usually funny and rhyme tends to help it. Very occasionally, I delve into darker matter but I usually feel constrained by time and linearity. I feel like I want to get my whole point across but also to digress. There's not enough lines to say what I want to say.

I don't read a lot of poetry online either. Usually it's too shallow for me.

THEN

Along comes Jennie Linthorst.... wow.
I think this could be the first time a poem has ever brought tears to my eyes.

Jenny has gotten over the limitations by writing a series of eight poems, each one moving deeper into what it's like to be the mother of a child with sensory processing disorder.

I'm stunned. Hartley Steiner's 30 SPD stories in 30 Days series is amazing. It's turning up some real gems - and this is one of the best.

The Lindhorst Family: My story of SPD through Poetry
by Jennie Linthorst

Have a read.

Monday, October 18, 2010

Campaigning against Apathy - The Manchester Bullying

I mentioned this on twitter/facebook a few days back as a gross miscarriage of British justice but now it seems that a National Autistic Society in the UK is beginning a campaign - and I want to encourage as many readers as possible (in all countries), to sign up and voice their opinions.

Last week, it was reported that the three boys who tortured a boy with aspergers - and this is serious torture which will leave him emotionally scarred forever - got off with 80 hours of community service.

A link to the UK Daily Mail article is below - I urge you to read it because it describes the abuse and the ruling in detail;


Evil teenagers who 'tortured' autistic boy, 17, for three days free to roam streets after judge fails to lock them up
By JAYA NARAIN


The sentence was a 3 month curfew and 80 hours’ unpaid community work.

What happened to the autistic boy was tantamount to rape and I believe that it would leave a similar level of emotional scarring.

"Now he has nightmares and he does not trust people. He is scared of everything really and now this lot are free to walk the streets."
- The boy's Grandmother

The crimes have been admitted to and the bullies took video footage of the "event". All the proof is there and yet, the sentence reflects an unbelievable degree of apathy on the part of judge Jonathan Geake who said he had taken into account the attackers’ ages, remorse and the fact they had pleaded guilty.

What about the victim who has to move to a different area and try to rebuild his life? Why is it that the judge seems to care more for the feelings of the attackers than the victims? Why is this tolerated? Would it be different if the boy wasn't autistic?

Please take a few minutes to fill in the campaign form and add to the petition for a stronger sentence.

Thanks to ClaireLouise for making me aware of the campaign.

Saturday, October 16, 2010

Article: Feelings Matching and Memory Game

I'm just drawing your attention to a resource that a reader pointed out to me at the "I can teach my child" blog (http://www.icanteachmychild.com/)

I Can Teach My Child

The article is called Feelings Matching and Memory Game and it explains how to create flashcards to teach feelings to your child.

Although the article was originally written to teach very young children, it could also be used to teach older children with aspergers the rudiments of facial expression interpretation.

It's well worth a look.

Tuesday, October 12, 2010

Get Away from Me with Your "Perfect Kids" - Part 3: Family

In part 3 of this series about when our support networks go wrong, we look at family.
If you haven't already read them, you might want to read Part 1: Introduction and Part 2: Mother's Groups.


If there's one group of people who you can always rely on for support and acceptance, it's family - right?
Right... Except when they don't.

One nice thing about family is that they'll usually stick up for you in battles against non-family, like school. They generally won't come out and support you but they'll at least make the appropriate empathetic "umms" and "aahhs" when you talk about the problems.

The problem is that families generally aren't shy about coming forward with ideas of their own. If those ideas lead to conflict with other family members then the old "favourites" games come into play and the rest of them take sides. You could find yourself on the receiving end of abuse and even "excommunication".

The Genetic Link
Families vehemently deny genetic links because it implies that there is something "wrong" with them or worse, with their bloodline. Where there is clear published research available for the genetic side of things, they'll usually try to blame a specific individual who has married in. Finally, when all else fails, they'll simply deny that your child has the condition that they have been diagnosed with, citing all manner of sterotypes and anecdotal evidence to support this.

Even worse, the negative behaviours that you'd normally put down to your child's condition get blamed on your own parenting abilities. There's nothing that destroys a parent's faith in themselves quite as well as criticism from their own immediate families. Your child's hyperactivity could be blamed on their eating habits, their "low muscle tone" is blamed on computer gaming or television and their anxiety is blamed on the excess of shelter you provide.

It doesn't stop there either; a lack of reaction to a gift is your fault for "spoiling them" or for not teaching them proper manners. Meltdowns are your fault for giving into them in the past and many of their other behaviours, such as lack of eye contact are your fault for not exercising appropriate discipline.

The problem is that some of these criticisms ring true. Perhaps you do feel guilty about some of these things. All parents have nagging doubts. Does my child really have this condition? Am I just "doing it wrong"? Rather than being a bad thing, it's a sign of a good parent to question their own judgement from time to time. Perhaps there are ways that you can reduce some of the issues with changes to your parenting style.

Reduction is one thing. Elimination is another thing entirely. Your children have been diagnosed. They have a condition and it's nothing to do with your parenting abilities. Having family attack these "weak points" just isn't fair. All it does is strain family relations. No good can come of it.


Corrective Parenting
As new parents, we all need a little advice from the older generation at times and when we want it, don't worry, we'll ask for it.

Sometimes though, we want to do things our own way. Sure, the response of the older generation to childhood behavioural problems was to spank all of children in the room rather than find out how a fight started but that was then - this is now. That world and those days are gone.

It's hard enough to do the shopping with a meltdown-prone child while there are other people about giving you disapproving stares. It's another thing entirely when you're trying to soothe an overwhelmed child while your mother or your mother-in-law is telling you loudly that all the child needs is a good whipping.


No Sympathy
Then there's the lack of sympathy. Sometimes as parents, that's all we want. A little empathy, a little sympathy. Someone to say, "You're doing a good job". Instead, we get,
"You're not the only one who has had to raise kids. We've all done it - so get over it!"

There are a few problems with this statement. First of all, I seem to remember that when I was young, the grandparents took a much more active role in the family. The baby boomer generation seems to love spending their retirement years travelling overseas, on bus trips and generally having a good time without their children.

Couple time is a thing of the past. I can remember my parents leaving us at home while they went out. That sort of thing would be unthinkable today. Parents who do that could have their children taken off them. I can also remember the older generation coming over to mind us while my parents got their much-needed couple/recharge time.

The parents of today are working increasingly longer hours. It's also much less common for mothers to be able to stay at home. Today's society depends on a double income. Then of course, there's the high divorce rate. Many of today's families are single parent.

Sure, I know we're not the only generation to have to raise kids but the conditions have changed and we need support - not criticism.


Unsupportive Partners
I could write reams about this, not that it's a problem in my family. My partner is the best and most supportive person I could wish for. It's just that this is a problem I hear about time and time again. "Despite the diagnosis, my partner doesn't accept that our children have .....".

It's difficult enough when you're facing opposition from the grandparents but when it comes from your immediate family, it makes life almost impossible. How can you effectively treat a condition that one parent doesn't believe exists? There are so many ways in which the disbelieving parent can block the treatment and support that your child so desperately needs.

If this is an issue in your family, then it needs to be sorted. You might be able to fight for your child now but eventually you'll be worn down. Instead of fighting, compromises are needed. For example, regardless of whether or not your child has aspergers, it's a given that speech and/or occupational therapy can help. Instead of concentrating on the diagnosis, concentrate on the possible treatment. Any help for your child is better than none at all.

Friday, October 8, 2010

Article: The Bollard Family by Gavin Bollard

I'm just drawing your attention to an article I wrote for Hartley's 30 Families in 30 Days SPD Fundraiser.

It's simply titled; The Bollard Family and it's available on Hartley's Life with 3 Boys.

I figured that since the series was about sensory issues, I'd just pick one of the groups of sensory issues in our family to talk about. In this case, it's oral.

Tuesday, October 5, 2010

Get Away from Me with Your "Perfect" Kids - Part 2: Mother's Group

It's obvious that parents of special needs children need support and that often they will turn to support groups, relatives, friends and acquaintances for that support. In this series, we're looking at how these support groups can sometimes turn into your worst nightmare.

This time, it's the turn of the "Mother's Group"


So, What are Mother's Groups Anyway?
I'd better clarify this because I'm sure that the support structures probably differ from one country to another. In Australia, Mother's groups are usually local groups of mothers who have all had babies at around about the same time. Hospitals and Neighborhood centers often put new mothers in touch with them.

I'll agree that mother's groups have their place. They provide a sounding board for mothers with questions about babyhood and motherhood. They provide much needed social contact for otherwise housebound mothers during that critical first year and they provide a great early warning system when your child is slow to hit those all important milestones.

There's a flip-side to all this though. Dysfunctional mother's groups can make you feel like a failure as a parent. They can make you set unrealistic goals for your children and they can make you feel excluded. It doesn't take much to tip the balance in a mother's group from functional to dysfunctional.


The Natural Parenting Influence
Mother's groups often force "natural parenting" concepts upon you - and can exclude you if you fail to follow them. Some of the terrible ideas which come from natural parenting include;

  • Cloth Nappies are Better: In fact, cloth nappies are more likely to give you child nappy rash and are quite expensive in terms of time and effort than their disposable cousins. I'm sure that there a situations where cloth nappies are better but really, it's a mother's choice to use whatever works for her.

  • Immunizations should be avoided: Some mother's groups get very pushy about the idea of immunization. Some claim it causes autism, many claim that it's unnecessary. There's enough research to suggest that immunization does more good than harm. Again though, it's a mother's choice.

  • Children should not be allowed sweets: It's amazing how many mothers freak out when there is confectionery at a child's party. They claim that it makes children hyperactive and fat. Maybe it does but only in large quantities. Again, it's a parent's choice what they expose their child to.
There are lots of other examples including television viewing, McDonald's food and herbal remedies instead of medicines. Note that I'm not saying that these things are wrong - just that mother's groups have no right to impose their own personal viewpoints on other mothers.


Breastfeeding
Breastfeeding is probably the greatest example of the natural parenting influence gone wrong. There's enough research around to suggest that usually "breast is best" but ... sometimes, it isn't.

Sometimes mothers need to be on medication which seeps through into the milk, sometimes they're not well equipped for the job, sometimes mothers have other issues like anxiety and PND which interferes with feeding and sometimes mothers just don't feel comfortable doing it.

Whatever the reason, there are times when breast is NOT best - but nobody will tell you this, least of all those other breastfeeding mothers.

Even worse, breast feeding is pushed really hard from outside the mother's group. Hospitals, neighborhood centers, doctors and the media often present a one-sided view of the issue. Mother's group is full of mothers who make breastfeeding seem easy and who talk about it as being a crucial part of motherhood. You can imagine the pressure on a new mother to conform and the feelings of failure when it just doesn't work. These mothers receive a whole lot of unnecessary advice about the various things that they should try and they're constantly fending off questions about whether or not their mother was able to breastfeed them. They receive incredulous stares and snide comments when they take out a bottle and when their children are sick or slow to meet their milestones, there is the inevitable stream of comments about this being caused by not breastfeeding.

This is bullying at it worst. There's no other name for it.


Milestones
Then there are those milestones. When did your baby first sit up, look around, walk or talk. All babies are different and while it's nice to know when those milestones start, you don't need constant reminders that your child isn't hitting them at the appropriate ages. Mothers worry about this enough without constant judgement and comparison from their mother's group.

Some mothers will proudly insist that their child is toilet trained at amazingly early ages. This is despite medical evidence which proves that children can't possibly be trained below a certain age. What these parents are really doing is "toilet timing". It simply means that their child is so regular that they are able to anticipate the times they need to use the potty and make sure that the child is in position.

They'll never admit it of course - and pity the poor mother whose child has delayed toileting. You can imagine the kind of pressure these mother's groups will put her under. When the other mothers are happily taking their children off to toilets, it's painful to be still changing nappies under their critical gaze.

It's not just the looks and the comments though. It's the fact that the new mother has to sit with her crawling child while all the other similarly aged (and younger) children run around. By being delayed in its milestones, her child singles her out as being "different" and as the constant stream of well-meaning advice "have you tried this..." and "this is how I did it..." begins, that fragile self esteem begins to crumble.


Gifted and Special Needs Children
Then of course, there's the mother with the "gifted" child. These children usually aren't really gifted but somehow the mother makes her child out to be super-special with comments like, "my child is writing her name" or "he's already reading". They talk about special schools, interviews and how their child has been accepted.

If your child has delayed speech or is showing signs of difficulty with simple tasks, these comments only serve to "rub it in" and make you feel worse. The mother of the special needs child will begin to question her own abilities as a parent not realizing that at least half of what is being said is simply "keeping up with the Joneses" style competitive comments. A lot of it simply isn't true.

There's also the other special needs children - those with a formal diagnosis. These are often the children of experienced parents or teachers who recognize the problems before they begin to exert an influence. Their child gets an early diagnosis and whole lot of early intervention and funding. They may even start reaching academic milestones before many of the other children in the group. The first "special needs" child in the group will tend to define "autism" for the rest of the parents. If he has poor social skills but good mathematical or reading skills then suddenly your non-academically minded child looks even worse in their eyes.

If you get a subsequent autism diagnosis, you may get some sympathy but the other mothers will still wonder why your child isn't doing as academically well as the other "special needs" child in the group. Again, there may be comments about your abilities as a parent.


Segregation
Finally, there's the point at which formal separation begins. The other mothers increasingly notice that your child is different. They may notice a lack social skills, frequent meltdowns or simply poor use of language and increasingly they direct their children's play towards other children.

The exclusion of the child leads to the exclusion of the mother. These parents want to talk about "happy" things. They're simply not interested in the plight of the special needs child and they don't want to understand the mother's feelings.

As the affected child is increasingly excluded from social events, such as birthday parties, so to is the mother - she's simply not invited. It starts with kiddie events but it soon spreads to adult events like "mothers nights out". The irony of course is that the mother of a special needs child probably needs the company of other adults more than most but the exclusions take all of this away from her. If she has any insecurities, the exclusion will only make them grow.

If you're in a mother's group and you're in this kind of situation, you need to get out fast. This is a sure sign of a damaging and dysfunctional mother's group. It's only a matter of time before you overhear something that you shouldn't or before these exclusions become so overwhelming that it leads to confrontation.

You're better than that.

I'd just like to acknowledge the help of my wife in writing this post. A lot of the things here are very feminine and there's no way I would have picked up on them without her help. Thanks a lot Joey!

Monday, October 4, 2010

Article: The Struggle for Acceptance by Gavin Bollard

Just drawing your attention to an article I have written on the Static Vox blog.

It's called The Struggle for Acceptance and it's part of a series aimed at increasing understanding of what it is like to navigate the world as an adult with autism.


You can also see an earlier post on the subject by Rachel Cohen-Rottenberg.

By Rachel Cohen-Rottenberg


Thanks Stat Mama for creating this series. Please check out her blog as it's very insightful.

Saturday, October 2, 2010

Get Away from Me with Your "Perfect" Kids - Part 1: Introduction

No, this post isn't a rant - at least, I hope it isn't. Like most of my posts, it's simply designed to raise awareness. In this case, I'm kicking off a series about the sorts of negative comments that parents of children with special needs face.

Being the parent of one or more special needs children is a difficult and often thankless job. Other parents, get praise, excitement and love from their kids - and so do we - but sometimes our kids don't react quite the way we expect. Sometimes they seem less grateful for expensive gifts, less receptive of our hugs and less expressive of positive feelings for us. It's tough for our kids but it's also tough on us as parents.

Sometimes we feel burned by the whole experience - and we don't need someone else to come along and tell us what we're doing wrong - or how much better their child is than ours.

It's a sad fact that sometimes special needs parents express a sort of "evil glee" when they hear about other people with "problem children". Are we bad people because of that?

I hope not.

It's not that we want bad things to happen to others and it's not that we take pleasure in the news. It's just that we crave understanding - and sometimes the only way to truly understand a situation is to experience it.

I was recently reading a page called the "Top Ten Snappy Answers to Annoying Comments" on autism.about.com and I was thinking... "Yes, sometimes I'd love to give those responses out. I've heard most of those annoying comments myself and it would be so satisfying to snap back. Of course, I never would. I'm too respectful of others (or perhaps I'm just conflict-avoidant or chicken?).

Whatever the reason, the thought still stands. Those "out of experience" comments do a lot more harm than good.

In this series, I want to take a look at some of the damaging support groups out there. Now there's a contradiction in terms. The groups I'm talking about could (and usually do) provide a lot of much needed support but then suddenly and without warning they start doing a lot more damage than good.

As a parent, you need to know how to recognise the signs and you need to know when to quit. Hopefully this series will give you some of the clues.

Next Time: I'll start by looking at babyhood and mother's groups.

FTF: Post 9: "Finding My Inner-Self" By Diane M. Renna


This month's "First things First" post is by Diane M. Renna, a Reiki Master Teacher and the author of "Meghan's World: The Story of One Girl's Triumph over Sensory Processing Disorder".

You can find a lot more information at http://www.meghanstriumphoverspd.com/.

The post is available on Diane's site (bottom of the page) and also at Asperger Ninja and I urge you to read it.

Friday, October 1, 2010

The Drug Bandwagon - Ritalin

This was meant to be a companion post to "the drug bandwagon" but I've been so sidetracked lately that it's slipped a little.

I've talked quite extensively about Ritalin in the past but I was answering some questions for someone recently and I figured that the information was worth sharing - even if it covers some old ground...

Disclaimer
As per usual, when I do a drug-style post, I just want to start with a quick disclaimer. I'm not a doctor, so any advice I give should be treated as lay-person's advice which should be checked by a professional.


The Question
The question I was asked was about Metadate CD however Metadate CD is just another name for "day-strength Ritalin" - as is Concerta. Ritalin and Concerta are brand names while Metadate CD is the generic (cheaper version).

Everything you read about Ritalin and Concerta holds true for Metadate CD.
(but of course, not everything you read online is true).


The Horror Stories about Ritalin...
It's true that there could be some nasty side-effects with Ritalin. The same goes for every single drug in history - including Aspirin which has a much, much worse track record. No drug is 100% safe so use any drug with caution and consider doing a test on yourself (either parent) first before you try your child. Unless your child is adopted, you're the closest genetic matches for your child and will be better able to assess the likelihood of side-effects.

Don't forget though that the adult dosage is probably much higher than the child's dosage. As a good starting point, the dosage is calculated by weight. If you weigh double your child's weight, then in theory, you'd need to consume double the quantity to get the same effect.

Of course, your doctor should be able to give you a much better idea of the ratios but if they are resistant to the idea for health reasons, then consider this - if your doctor doesn't feel that a particular medication is safe for you, how can he warrant that it will be safe for your child?


The Detractors of Ritalin
There is a strong anti-Ritalin movement however you'll find that it usually stems from two sources;

  1. The Church of Scientology, which doesn't recognize Autism as a condition and which opposes the use of any drugs (including Aspirin).

  2. Parent groups who are opposed to the use of any medication in children (and often think that everything comes down to either parenting or diet).
Understand that both groups are biased and that sometimes their information can be downright "lies". They use a lot of scare tactics and with a considerable amount of success.

The fact is that Ritalin has had over 50 years of clinical tests and it's arguably one of the safest medications of its type for children today.

Of course, that doesn't mean that you should write-off the advice of parent groups. Fish Oil and various dietary changes didn't work for my son but maybe they will for yours. Every child is different and perhaps one child's genes make him more susceptible to alternative medicines than another.

Even if the natural drugs don't actually work, sometimes the placebo effect is all takes.


Suitability for Purpose
I'm often told that people are on Ritalin because they have aspergers without having been told that the child also has ADHD. Ritalin is an ADHD drug - not an Aspergers drug. There is no drug which is known to be effective against aspergers. So, if your child doesn't have ADHD, then you probably shouldn't be giving him the medication.

There are two main types of ADHD.

  • ADHD - Hyperactive: These are the kids who you see "bouncing off the walls" in Supernanny.

  • ADHD - Inattentive: This used to be called ADD. In this case, the child isn't hyperactive at all. It's just very difficult to get their attention - and almost impossible to keep it.

ADHD is a very common co-condition for people with aspergers. Find out for sure whether your child has it or not. This will help you to decide on the issue of medication.


It doesn't work for everyone
Ritalin works differently in different people - which is one of the reasons why I suggest you test on yourself first. Some children react really well, while others don't. It's rare for a child to react poorly to ritalin but it's reasonably common for it to seem to have no effect. In these cases, you may find yourself under pressure to increase the dosage. Small short-term increases are acceptable but if you don't see changes quickly - it's time to discontinue.

Ritalin also affects people of different ages differently. A child who has no response on ritalin at a young age may respond better as he gets older (or vice versa).


Expect Results - or Discontinue
Ignore the information online about it needing to get into the system. You should see major behavioural changes within the first two weeks. If you don't, then discontinue use.

It takes about 1 hour to get into the system and the effects usually last for four hours. Of course, if your child is on a day strength variant, you may get 11-12 hours out of it. You will notice some significant mood changes as your son comes off the ritalin, so try to be tolerant at that time of night.


Too much, Too Little
Too little Ritalin and your child will be their usual disruptive or inattentive self. Too much and while they seem like the model student they will have actually "zoned out". This is what I call the "zombie effect". Your child needs exactly the right dosage to retain their personality and quirks while suppressing the attention deficit urges.

Teachers tend to love the zombie state, so be careful and test the ritalin at home before you let your child use it at school. You need to see the effects in order to gauge the correct dosage. The idea of the ritalin is to give your child more control over their own impulses - not to suppress them altogether.

Your child may also need more ritalin as they get older as it's often determined by body mass. If your child goes through a growth spurt, don't be surprised if the paediatrician recommends a higher dose.

Of course, the reverse is also true sometimes. As your child develops more and more self-control over their own impulses, they may be able to reduce the dependency on Ritalin. If possible, give your child a chance to operate without it - on weekends and school holidays. Of course, if there's learning involved (eg: scouting activities, weekend tutoring etc, you might consider giving medicating for certain occasions). Just be sure to use it to give your child self-control, not to make your job as a parent easier.

Make sure that your child's school knows about the ritalin and knows when you increase or decrease the dose. They can help to watch for "danger signs". You'll probably encounter a lot of different opinion about medicated children in school - both positive and negative. Be prepared for people who can't suppress their urge to comment and don't let it get to you.


Side Effects
There are a few side-effects to ritalin but the most well documented ones are loss of sleep and lack of appetite.

Remember that the tablets last for 12 hours and make sure that you don't have your child on medication close to bedtime. You may find that it helps to have a mix of both day-strength and half-day tablets. (not for the same day obviously but for days when you forget the tablet or need to give it to your child later).

Some parents give their children Melatonin to help them sleep after Ritalin. This is ok but it's counter-productive if the ritalin is still active in their system. If the ritalin is keeping your child up at night, try either giving him his tablet earlier in the morning or switching to two Ritalin tablets per day (you'll need the school's co-operation if you do this).

Ritalin also puts a bit of a horrid aftertaste in the mouth, so make sure that your child has finished their breakfast before you give them the tablet.

Ritalin does not bring about long-term change. In fact, it drops off quite drastically when you stop taking it. There are articles about traces lingering in the system but that's true of any medication. Any changes it makes to your child should be temporary.


Alternatives
There are obviously drug alternatives to ritalin but these are all at least a little more dangerous because they've had less clinical trials. Another thing which is commonly used in place of Ritalin is coffee. Believe it or not, coffee is often just as good with ADHD children.

Changes to diet can also help but only if a child has specific intolerances to various food colorings and preservatives etc. Sometimes it's worth a go though.
I hope these help anyway.

Ultimately, you have to make your own choice - and it's always difficult.