“Oh, your kid only has Asperger’s; you’ve got it easy. Try dealing with my life and my kid for a day.”
Ever heard that before? I heard this from an autistic kid’s parent just this week. At first, I guess I found it hard to believe that someone would explain what I deal with daily as “easy”, even comparatively. And, though I made no formal reaction to the comment, it did make me think about how there seems to be a division of opinion towards differing functional levels in the autism spectrum.
After some thought, I realized that I’ve heard the same comment before, just presented in a slightly more elegant package. In fact, even in some LAUNCH classes I took right after the diagnosis, I noticed parents would have different levels of empathy when talking to other parents.
I don’t try to hide my son’s condition, though sometimes it doesn’t really show through and a bystander may not notice any difference from a NT kid (a common theme with Asperger’s kids). Does that make life “easier” than a parent who nurtures kids with lower-functioning autism?
If you parent a kid with (what I call “classic”) autism, have you ever thought this; or, if you parent an AS kid, has this ever happened to you?
This post can also be found in my journal on Trusera
In Colorado there are 12,500 people on the waiting list for developmental disability funding that enables them to (afford the ability to) participate in treatment programs. Out of that number, 2/3 are on an immediate waitlist – meaning that they are only waiting for money to become available.
Colorado is voting on a state statute titled Amendment 51 which provides the additionally-needed $185M to essentially end the waitlist for developmental disability treatment. This money comes from a 0.2% state tax increase (2 cents per $10) phased in over 2 years.
Although my child has AS and is not on a CCB waitlist because his condition is mild (and we don’t want to take away someone else’s opportunity when they need it more), I am surrounded by families who struggle every month – who have to choose between therapy and life necessities.
It makes sense to approve additional funding, even with the current state of the economy – those who are on the waitlist or who are paying with their retirement funds to treat their 3 year old are impacted much more severely under the current conditions. Though opponents say that this extra money could be gathered by reallocating how Colorado spends its current funds, there haven’t been any plans created by opponents which detail how to allocate $185M with a zero net change to the taxpayer. I would suggest that the opponents of this measure are not among those who are in touch with the 12,500 people that can’t get a fair shake.
I’ve been attending some LAUNCH classes at The Children’s Hospital, which I feel fortunate to have locally. This is continually one of the top 10 facilities for children’s needs in the US, and though we had to wait a VERY long time to get seen there, my reflection on the matter is that it was worth the wait. The LAUNCH classes are mostly educational (with some direct Q&A) with our developmental child psychologist helping families understand the ins and outs of the entire autism spectrum. I’ve certainly learned a good bit about different treatments that are available, even if I’ve not yet decided to pursue one.
In other news, trusera contacted me about blogging for their website over the next few months to discuss Asperger’s Syndrome – today I’ve accepted their offer, so much of my time over the next few months will be spent authoring for them. You may even see some of the more well-written stories from this blog on there if I’m pinched for time.
And, reaching out for support – do you guys know about and/or use the Yahoo! Group called MASK? It’s official name is maskas99 and it is an invitation-only group, but it is very active and has a lot of input (though some of it is little more than drivel).
Sorry there’s not more time. AS is doing ok so far in kindergarten; we talk to his teacher frequently and we are pretty much aware of where he’s at socially, and we still work to improve it.
I apologize for being vacant from the blog for awhile. Yes, all this time has been spent in limbo somewhere between waiting for appointments and attending them.
Last week, I had the pleasure of taking AS out of kindergarten for a day and escorting him to his evaluation at one of the top 10 children’s hospitals in the US. Those who’ve been through the cognitive and adaptive 4-hour exam with a child understand very well that this is not an easy task.
As expected, he performed brilliantly on the cognitive exam. The psychologist commented several times that he was performing well above his age range for the tasks he had. I was surprised, because most of the objects for the task were things he’d never seen before – like cubes that are different patterns on each side.
And, as expected, when it was time for social, adaptive play, he stumbled, and stumbled, and stumbled. The two parts of the exam were clearly night and day, and it was relatively easy for our psychologist to conclude that AS really does have Asperger’s Syndrome, or some form of high-functioning autism that is very near to it.
I believe at this point we are somewhat relieved to have officially learned this about AS. It does open up things for us which were closed until the diagnosis became official, so that is morbidly good.
Over the coming weeks, I’ll begin sharing some of our outreach options and how they do or don’t work for us with AS as they are applied. We were introduced to the CCB (community board) but because he has an IQ over 70 (it was approximated at 110 to 125, actually) we’re pretty much just hoping for some respite money or some advice.
You know, what I think is funny is how, once you hear that diagnosis for real, we all start questioning what properties of ASD we actually have ourselves. While I’m no hypochondriac, I do profess to small amounts of OCD and ADD at the same time; I also admit a little bit of adolescent aloofness, but then again, it’s an easy mold to slip into for the tweener who rides a wave of shifting insecurity.
We don’t blame anyone for this, nor should we. AS can’t succeed any better than before just because we find root cause after some exhaustive search of the entire family trees for 10 generations. The focus has to be on right now, on what’s next, on the near and not-so-near future; that is where we will succeed.
Following up on my previous post as I said I would, I still do not have anything official from one of the best children’s psychological and developmental teams in the entire nation. It’s much simpler than you may think – they aren’t sitting in the lab mulling over volumes of brainwave data to calculate some probability; hell, if that is ever going to happen we haven’t gotten to that part yet.
No, it turns out that every appointment I had with the Children’s Hospital – ranked 7th in the nation overall – was either canceled in error, rescheduled without just cause, or just plum canceled because the doctor couldn’t make it.
Was I furious? I still am. Children’s still owes me a phone call that tells me when I can send in Mr. AS for his 2-session psychological evaluations. I’d certainly hoped to do them between the time we return from Japan (a different post I’ve not written yet) and the time kindergarten starts, but that’s a 3-week span and the timing doesn’t seem likely.
In recap, this evaluation was initially scheduled in December, 2007 for May this year because that was the first available appointment; it was initially scheduled as a 6-hour full eval in one session. Show me a 5-year old child that can tolerate 6 hours of medical torture and I’ll take away their medication. Exactly one day before our appointment, the hospital called to cancel it “because the insurance company needs yada yada yada first…”. I simply said to the appointment line worker “perhaps you could have considered that in the gap of 6 months that I’ve spent waiting for this appointment as to avoid such a conflict” and I guess I struck the magic note on her marimba or something. The very next day I was in their office meeting with the clinical psychologist getting my business handled.
So, I’m sorry to say to my readers that I still “got nothin’” to confirm what I already know, as I said in my last post. But, as a parent of the kid enduring this, I just want it to be done with so we can move forward.
So, since I began this blog to share my insights about parenting a child with AS, I thought I’d share some news as well. This might not turn out to be an advice post as most of my other ones in this blog are.
This month we are going in to see a battery of doctors who will be testing and prodding and poking and hmm-ing at our older son, referred to in this blog as AS, to provide us with an official, medical diagnosis of his condition. That being said, we may find out that AS doesn’t have Asperger’s at all, but we are pretty confident that we’re going to hear a panel of professionals tell us what we already know – that he does have this condition and his case is on the mild side.
The question is begged: why are we even doing it if we know the outcome? For us, I think it’s about closure. We’ve spent the last three years (since he was just turning 2) trying to figure out why none of the “traditional” parenting skills were particularly effective, why several of the things which should be easy to understand for a child are like throwing a glass of water at a forest fire, why we’ve had to be so unconventional and “work so hard” to get him to the functional level he’s at today. So, we don’t need a doctor to tell us that he’s got AS so that we can feel like we’re battling a known thing or so that we can feel like what we’ve done was “worth it” – we’re not trying to compartmentalize our child. We are more interested in using the resources which become available to us when he is indeed diagnosed to build upon the foundation we’ve tried to give him. It’s what any concerned/proud parent would do.
Of course, I will post the outcome of our visits. Even if AS is proven medically not to be officially AS, I will likely keep maintaining this blog as long as there are readers for it.
Hello parents. Today I want to talk about something a little less parent-focused and a little more diagnosis-based. I promise not to diverge from my own experiences and advice too often, but I will share some personal experiences in this post as well.
It’s commonly-held that Asperger’s Syndrome is rarely alone in the mind of a child. Often, AS is either mistaken for some other condition, or it is properly diagnosed and later discovered to also be symbiotic with another psychological/genetic/emotional/otherwise distressing condition. Briefly, I want to touch on what these are. Parents, this isn’t to increase your level of paranoia; I’m going after awareness, I promise.
This information is transcluded from aspergers.com, a publicly-available website offering this information at no charge.
Asperger’s Disorder may not be the only psychological condition affecting a certain individual. In fact, it is frequently together with other problems such as:
Most likely, you believe your AS child has ADHD or OCD unless their particular case makes them especially sedentary. I’ve believed that my AS son has ADHD for quite awhile, yet he has been successful in school once he learns the routines of attending. The truth is that it takes a medical professional (in many cases a developmental pediatrician specializing in psychological disorders) to accurately diagnose any of these conditions. The one exception to that statement is ODD, which is actually a behavioral condition rather than a psychological disorder.
What should we do as parents? I recommend some research; use this Internet – that’s what it’s there for. Secondly, I recommend you discuss all of your concerns with your child’s pediatrician. Chances are that if you’re battling AS at home, you’ve already done this. After that, reach out and ask for others to share their experiences. That is the purpose of this blog, and I hope that others can benefit from what I place here. So you all know, I normally have my AS son with me when I am posting in this blog since he is infatuated with computers; he is a constant inspiration for me to provide genuine life experiences.
I’ll be posting about something more close to home next time.
Oh no; it’s inevitable. Parents realize the onset of an AS meltdown about 2 thoughts before the AS child self-realizes that their routine – their woobie – isn’t going to be there this time or beginning with this time through some course. One of the hardest things to do as an AS child’s parent is impart change. Yet, change happens all around us every second undeterred. What is it with this one routine which makes it an impossibly-hard challenge to adjust, even if the adjustment is a small one? Let’s think about this for a minute.
I’ve said this before – but I have a lot of new readers (and thanks for reading) – let’s consider the mind of a child with AS versus a “normal” child. A “normal” child’s mind is quite like a car; it drives on a road from point A to point B, and often realizes that there is more than one way to get from A to B, but chooses a preferred route understanding that other routes offer different opportunities along the way. If the preferred route is unavailable, a secondary route can be taken with minimal interruption and may prove to be better than the original. So, what about a child with AS? Their mind functions quite like a train; they are quite capable of getting from A to B in a timely fashion, but there is only one real path to accomplish it. Changing the route somewhere in the middle often causes a cascading effect if it is even possible; but, rarely the train is able to switch onto a different line and still arrive with little impact.
Let’s use this to discuss children’s routines and use the start to finish of a routine as A to B. AS children have one method that they will use for any activity, though in some milder cases adaptability is a moderately-developed skill and this is less true. AS children do not want to comprehend change – they are stepping out of their safety zone into some vast unknown realm of chaos, much like a train jumping its line. How do we impart change as parents?
I’ve talked to many parents who have tried either brute force or bribery to no avail. I’m also guilty of trying the bribery approach with mildly-successful results. But in trying to be a parent who wins over the hindrances of AS, I wanted to find a way that’s both effective and not based in false-pretense. I’ve learned that demonstration is the best way for my aspie to accept a change. What works for me is what I call the “watch papa” approach.
Ok, so that sounds well and good, but my kid’s already tuned me out and is melting down so I can’t try that. Yes, I hear you; yes, it happens. I deal with that all the time – using the method of small decisions I described in my last post, first I aim to get my child calmed down enough to listen to what I’m saying. If I am trying to enact something simple, I break down the changes themselves into the decision process and get it done that way. However, this is also effective in a proactive manner – and this is how I recommend doing it to prevent said meltdown. Parents normally know in advance that they’ve got to make a change to a kid’s routine. The key here is to introduce it to the child before you actually need it to be accepted whenever that’s possible. A good time to do this is immediately after something that they enjoyed doing, or alternately whilst they are playing – you should always try to choose a happy time. Right when kids wake up is not normally a happy moment for them, so don’t try it then.
So, in review – change happens. Be proactive. Make kids make decisions if necessary. Don’t be fake.
Before I begin this post, I’d like to first state my personal position on this topic. I teach my children an appropriate, truthful representation of how to think of Santa Claus; both my AS son and my younger son alike hear the same story. In my other blog, I go on a somewhat personal rant about this very topic.
Now, my AS son is 4 and this is the holiday season where millions of children are anxiously awaiting a visit from Santa Claus, or Father Christmas, or whatever name he may go by in other countries around the world. Natually, my son is anxiously awaiting a similar thing, but only because he hears it at school, and what he hears at school differs from what I teach him at home. So there’s confusion with him, and as AS parents we know that confusion is not a good thing for our children.
Every time we go shopping somewhere, there is a “mall santa” waiting to have pictures taken with all the sniveling kids in line with their soccer mom mothers drinking a mocha soy chai latte on their cell phones in their bone-white-goose-down vests with the faux-fur lined knee-high snow boots and completely oblivious to the fact that their kids are ripping up the fake landscape. My AS son always says, “What are they doing?” to which I always answer, “They are telling their children that they don’t care about them.” And my AS son always looks like he doesn’t understand, but I know he does. He’s not tempted to go sit in the lap of some old, fat codger because he knows a different version of the Santa Claus legend. If he ever asks me who the person they’re waiting to see is, I say that someone “who represents Santa Claus for children to give their wishes to”.
See, I believe deceit is something which children do not forgive so easily. What’s more is that AS children may not have the ability to forgive – this is my son in some ways. Memory like an elephant, he will never forget situations where the expected outcome was not what he expected or if he was surprised [startled] while we were out. He is still talking about a visit to the zoo 2 summers ago (he was barely 3) where a roaming goose snapped at his hand for offering it a peanut.
Ultimately, many AS parents are often wondering the same thing with their young children; do we tell them a story about Santa Claus which may make them happy for right now but we know will devastate them later? Or, do we tell them the truth and spin the truth in a positive manner so that everyone is happy? For me, there isn’t much of a choice.
I’ve found that lots of AS children have an affinity for music, specifically drumming, because it is a motor skill that they can be good at even by approximating movements. My AS son is a die-hard fan of the Blue Man Group – when their music is playing everyone has to be quiet so he can hear it well enough to air-drum along (the same is true with guitar hero 3 – he likes about 5 songs on that game that he will air-drum for the whole song). But BMG is by far his favorite music.
If you’re not familiar with BMG, go onto youtube and look for a video of Tracy Bonham and/or BMG doing a song called “Up to the Roof”. This is a good one that’s live. Somehow, my son who is 4 years old understand this song, and it is now his “anthem”. Considering the challenge of being a kid with AS, I think it’s appropriate. The lyrics are below; what do you think? What is your AS child’s personal anthem?
All I see is not for me. What I want you have not got.
Tried to use things you sold me, no matter what the cost Tried to go the way you told me, but each time, I got lost The stairs didn’t lead me anywhere!
I’m taking the fire escape up to the roof. Don’t care if it’s not the way you find the truth. Time to make this right: to rise above.
This room and all of you Who say I should do like you would Tried to live the life you sold me, no matter what the cost. Tried to walk the way you told me, but each time I got lost The stairs didn’t lead me anywhere!
I’m taking the fire escape up to the roof. Don’t care if it’s not the way you find the truth And when I get up that high, I don’t know what I’ll find But I’d rather look at the sky than wonder why I let you take my time Time to make this right: to rise above.
I’m taking the fire escape up to the roof. Don’t care if it’s not the way you find the truth And when I get up that high, I don’t know what I’ll find But I’d rather look at the sky than wonder why I let you take my time. Time to make this right: to rise above. Time to make this right: to rise above
