Great Expectations…

I saw this meme on my Facebook friends’ feed the other day and I knew there was a blog in there. It reminded me of something my older kids’ dad and I used to jokingly tell them when they got rowdy… “sit still and don’t learn anything.”

It says two...but the truth is that applies WELL past that age...especially to our Aspie/autistic kiddos.
It says two…but the truth is that applies WELL past that age…especially to our Aspie/autistic kiddos.

I want to say more, but I am not sure that I need to with this one. Other than two…ten…or sixteen…age is a number. We need to instead focus upon brain development and judge our children not against others of the same age but against where they were last month, last year or sometimes two or even five years ago. I believe that given time and that chance to learn through play they will get there. In their time and at their pace, PanKwake’s recent growth spurt in her development validate this assumption.

This message is especially appropriate now that summer is here. Kids are meant to be out and about. As much as mine loves her iPad, television and YouTube, I make sure that it is alternated with loads of running, jumping, swimming, ice skating, climbing and building. I went to a conference three or four years ago before we had the autism (Aspie) diagnosis. It was on epilepsy (her co-morbidity) and behaviors. One of the speakers, a doctor and researcher, gave the best advice I have ever heard…get them out and get them moving. He did not believe that any discipline method could truly work with these children. Instead he advocated proactive management of their behaviors by keeping them too worn out to act out. You know what…there is lots to be said for his methodology.

So this summer when your Aspie, autie, ADHD or just plain old ‘normal’ kid whines I’m bored, before things escalate to the point of no return…meltdowns or punishments…give’em something to do. Here are some of our free or cheap ideas…

  • Bubbles…keep them on hand or make them yourself with dish detergent and water.
  • Water balloon fights…form teams even…just be sure to pick up the broken balloons as they can be very bad for fish and marine life if they make it into the oceans.
  • Water guns…Super soakers, especially on a hot day.
  • Walks…in the woods, to the park, around the neighborhood.
  • Hide-n-seek…and this one teaches them counting too.
  • Tag…oh, boy do we know this one.

Get’em out, get’em movin’ and keep’em happy, tired and learnin’. Or that is my theory anyway.

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The Great Pink Divide…Is it real?

Once upon a time…it was assumed that autism/Asperger’s was a boy thing. That girls simply did not suffer from this milady. Then it was recognized that some did but ‘experts’ still estimated that the ratio was 8 boys to every 1 girl. Dr. Tony Attwood shocked some when he said that he believed that ratio was more like 4 to 1. I used to believe that it was 2 to 1, but recently as I have observed and studied it more in PanKwake and other girls, I have come to question even that assumption.

I no longer believe there is any difference along gender lines in the prevalence particularly of Asperger’s or high-functioning autism. Asperger’s is just as likely in pink as it is in blue. The difference is not in them (our children), but in us and the experts. We fail to see it, misdiagnose it and leave them adrift because of our prejudices, misinformation and false assumptions. Plainly put, we cannot see it because we are not looking for it.

Have you ever played those spot the differences games in newspapers or magazines?

Never as easy as it looks...
Never as easy as it looks…

That is essentially what getting a diagnosis of autism or Asperger’s is. There are no blood tests, not even a multiple choice questionnaire that doctors sometimes use to diagnose depression and/or anxiety. It is all a matter of long history taking that can relies heavily upon parental memory of early development, observation of the child’s behaviors and most importantly interpretation by an ‘expert’ who has very little experience with your child. Despite fancy names like ADOS (Autism Diagnostic Observation Schedule), it is still a matter of OPINION…one experts or a panel. And the next one may see things differently.

If that expert or experts subscribe to the view that Asperger’s/autism is a ‘boy’ thing then they can all too easily miss the signs in girls, who do tend to express it differently than their male counter parts. Likewise, the ‘tests’ themselves are skewed to looking for those traditional or male expressions of the condition. So girls, who may have much less trouble making eye contact except under extreme stress, may not score high enough to tick their boxes.

The problem is that it is a vicious cycle that prevents our Aspies in pink from getting the interventions and help that they deserve. But until the ‘experts’ begin to sit on the play grounds as this mom does and just watch her daughter play with other kids…and see how many other girls in that park/school are facing those same challenges, nothing is going to change. You see all the scientific journals, medical texts and DSMs (Diagnostic and Statistical Manuals of the American Psychiatric Association…the bible for diagnosing ALL mental conditions including autism…and the idiots that took away the differentiation between autism and Asperger’s) can never replace a mother’s instinct.

And this mother is telling you right now…there are A LOT of Aspie girls in pink out there, who we are letting down. We need to raise the alarm, shout and scream until the ‘experts’ get it…Autism/Asperger’s is NOT a boy thing…it is a HUMAN one.

Awareness & Acceptance – Why I Light It Up Blue AND Gold

Thank you for this amazing insight. As the Mom of an amazing Aspie girl, I struggle with those words…awareness and acceptance. Your blog today really helped to place it all in perspective. You are right…we should never stop just at awareness, but without that awareness then the acceptance that I crave for PanKwake will never be possible. Thank you for being another brave soul out to educate the world about life on this beautiful, rainbow spectrum of Aspie/autism.

Naming The Stars

People are often surprised about my openness about being an Aspergirl. When I openly state it during a fairly random conversation (in my typically and ever-accidentally blunt Aspergirl way, never really quite realising what a bomb I dropping until it lands), people tend to go through a number of stages.

First is denial. “But you seem so NORMAL!” or “But you cope so WELL!” or “Well, I would never have known!”. This is my most hated stage of the process. It is a whole other blog post to do it justice, but truly, if you lived inside my head for a single day, you would know how much it costs and how hard I have to constantly work to keep that “normal” mask jammed firmly in place in public. You would realise that mentally I have to run up and down a mountain just to keep metaphorically standing still, and…

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A Growth Spurt…

We are all used to them. The kiddo seems to have grown like Jack’s bean stalk overnight. Pants are too short. Shoes too tight. And we rush off to replace their whole wardrobe. But what we are just beginning to understand is that our children’s brains continue to grow over their lifetime. And that they too can experience sudden bursts of development that change everything overnight. PanKwake has just been through one of those…and I am loving it.

Not that many years ago, scientists believed there was a ‘golden’ period of development between birth and five during which children’s brains grew and developed. They even believed that if children missed key milestones during this period, they were destined to remain behind their whole lives. As the parent of a child, whose autism/Asperger’s was not even diagnosed until she was seven, this was a depressing concept. All those missed opportunities for ‘early intervention’ angered me.

BrainBut as part of my continued search for the right options for my Aspie girl, I take online courses in psychology, child development and education. One course that I took last year called Good Brain, Bad Brain helped me to come to terms with all of that. One of the things that reassured me and completely transformed my paradigm was that the brain NEVER stops growing. Yes, we are born with a certain number of neurons. But more important than that are the connections they make. And you keep making those throughout your lifetime.

An analogy to this is FaceBook. If you think of yourself as a single neuron, you can make many connections…friends. And you can keep making those. Yes, occasionally, you lose a friend here or there. But up to something like 5,000 you can keep right on making new friends…no matter whether it is your first day on FaceBook or if your account is years old. What’s more, all of those friends are constantly making new friends. And together you form an interconnected network of friends…neurons.

And after a rough few weeks/months, it seems that PanKwake has made huge strides forward. Of course, the hardest part of all this is realizing when something is simply an issue of not having the right neural pathways. When the best and only answer is to simply…wait for the brain to grow. That is not easy, especially when your child is sometimes years behind their peers in terms of those pathways/connections.

But trust me…it is worth it. Next time, I will talk about one way of measuring that brain development…

Maybe It Is Us…

And not them.

By that I mean…maybe, just maybe…the problem with our Aspie (high-funtioning autistic) kids is not their behaviors BUT our expectations.

We have come to live in a world that is not very child friendly. Where children are expected to be min-adults from a very early age. Look at our modern lives…

We live in tiny apartments with no big back yards for them to play in safely. Rather than being able to just shout, ‘Mom, I am going outside for a bit,’ when they get to feeling restless, they have to compete with our computers, our television, our friends on the phone, our work and how knows what else for us to take them to a park.

At school they are expected to stay for longer and longer days…and more of them every year. When I was little, out school day was 8 to 2:30 with 45 minutes for lunch and at least half an hour for physical education plus music and art. That meant you spent less than five hours sitting quietly at a desk…pretending to learn while you really stared out the window and daydreamed. School started after Labor Day and ended before the beginning of June. Now…7:30 to 3:30 from mid-August to late June. And guess what? Fewer people graduate high school, fewer go to college and fewer get good jobs. And schools, teachers and law makers are constantly screaming we need longer school years?

Now I am not one of those…limit their computer/TV time types…BUT where is Barbie, dolls, smash’em up trucks and GI Joe? One misconception about those with Asperger’s is that they lack imagination. Maybe it is more the case that they do not get enough of an opportunity to use and expand what they do have. Like all muscles, they need to be exercised.

And food (I admit it…I fail on this one, but maybe I need to think about it some more and come up with an alternative)…instead of sitting down and eating dinner at the table, we eat in front of the TV. I read somewhere once that the single biggest indicator of success in school was not socio-economics or level of parental education. It was whether or not the family sat down and ate at least one meal per day as a family.

Of course, another factor over which we sometimes have less control than we think is…single parenthood. As a single mom myself, I do not mean this disrespectfully. I, above all people, know sometimes you have no ‘real’ choice. But that does not change the impacts this has upon the child. I often think…there is a very good reason that it takes two people to make a baby…because they really need two people to raise them. Well, honestly, a whole village…*nods* to Hillary Clinton on that one.

But that too is the saddest part…if our families are fractured…our societies have become toxic to our children. Children are no longer truly valued by them. Instead they are seen as necessary nuisances. That should be still, quiet and not make a fuss.

The truth is that children…ALL children…are meant to be…

  • Loud
  • Smelly
  • Dirty
  • Demanding
  • And so darn cute and lovable.

The difference between our Aspie kids and the ‘normal’ (yes, I know there is no such thing) ones maybe…that like one of my favorite 80s hair bands song…

.

Maybe they simply demand BETTER from us.

Happy Father’s Day

Being a parent is the toughest job out there, whether that be mother or father. But being the parent of a special needs child such PanKwake’s Asperger’s/autism, well, that comes with challenges all its own. So today, Father’s Day, a big shout out to all the amazing Dad’s out there dealing with those challenges…

I forgot one...who go on crazy rides like this one because of high proprioceptive needs.
I forgot one…who go on crazy rides like this one because of high proprioceptive needs.

Dad’s who…

  • Goes to half a dozen stores to find that certain food that is all their child will eat just then (and you thought the cravings ended when they were born).
  • Attends all those damned appointments with ‘experts’ that have no idea what life with a child on the spectrum is REALLY like. Kudos for sitting there calmly and not knocking the arrogant, condescending smile off their faces. And applause if you do.
  • Runs after them when they elope. Look on the plus side, saves on gym membership.
  • Spends more hours in the day playing at the park than sitting behind a desk.
  • Comes home from a hard day at the office to give your partner a break from the little ‘angel’ after an even harder day on the home front.
  • Is the go-to in-house techie expert that prevents so many meltdowns when the laptop, iPad, TV or whatever else just won’t do what they think it should.
  • Most especially huge thanks to those Dad’s with broad shoulders that are always wet with our tears on THOSE days.

Goddess bless and keep you all this Father’s Day and all year long.

My Best Birthday Prezzie…

Last Friday was my 50th birthday. And one of the hardest parts of raising an autistic/Aspie child is dealing with special events like holidays and birthdays. Such things are always challenging…too loud, too smelly, too bright, too many people. And that is for us ‘normal’ people. For those on the spectrum…I cannot even begin to imagine. So what is a Mom to do? A 50th b-day is a truly once in a lifetime celebration. There were friends I had not seen in…forever. And my other daughter who wanted to celebrate as well. So we went with having a BBQ at ours. In fact it turned into four days of stress…

How many 50 year old Moms do this?
How many 50 year old Moms do this?

Friday was my actual birthday and we went to the London Zoo…and she did beautifully. No meltdowns at all. Oh…and at 50 I did something that mothers half my age don’t/won’t…I crawled through the tunnels at the meerkat exhibit with PanKwake.

But what I am most excited about is her birthday present to me. Saturday was that BBQ…and she told me that morning that her present for me was that she was going to try her best not to have meltdown…or if she did then to keep it short. And you know what…she DID it. Not the first…but two very short (10 to 15 minutes) ones. I am so happy. It truly was the best birthday present because 1) she knew how much it would mean to me and 2) she really did do her best.

Of course…there was a price to pay…but that is another blog. For today, I am just going to enjoy the afterglow.