APE – the Asperger Parenting Experience

The Life and Times of one Asperger Parent

A Parent’s Prejudice Against Asperger’s

Posted by Patrick on 29 October 2008

This story also appears on Trusera

“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?

Posted in asperger, behavior, family, outreach | 11 Comments »

IEP for ASD Parent-Teacher Conference cliffs notes

Posted by Patrick on 19 October 2008

This post also appears in my journal on Trusera

I went to the first kindergarten parent-teacher conference for my AS son today; although this is not the first time I’ve done conferences (2 years of them in preschool), this IS the first one I’ve attended where there is 1) an established, finalized IEP and 2) an official diagnosis of Asperger’s Syndrome from a developmental child psychologist. Here are my notes, intended to serve as a guidepost for other parents who may be experiencing this for the first time.

I should say, my child has AS and attends a “regular” public elementary school. I visited a few special schools for more ASD-style therapeutic learning opportunities, but his IEP indicates 80%+ regular classroom (he actually takes 2hr/wk out of class), so I couldn’t justify the (wow, large) expense of the optional school.

The typically-developing child’s conference is a meeting with just the teacher and possibly a teacher’s aide. My meeting was attended by the teacher, the speech-language pathologist, the ECSE, and one of the district psychologists, as well as the dean of students. Don’t be overwhelmed by the folks who are there to both give out and receive information; they truly represent the child’s full range of experiences while at school and can offer a varying opinion base as to why certain situations may be more troubling than others.

It always helps to have the child’s home experience in mind when listening to the descriptions of school interactions. If they are similar, good; if they are vastly different, start thinking about how they are situationally different. In my case, they are somewhat similar, but there is more structure at school so he is very successful in that mode.

Take notes. Ask questions, especially of the teacher. Hopefully the teacher will have a journal or some form of catalogue that demonstrates your kid’s progress over time. If they don’t, suggest it, even if it’s for your kid. If it gets testy, ask for an IEP review and document it there (and maybe consider if you’re at the right school).

Share your experiences at home with the child. The school staff only has half of your picture – when they are telling you about the school experience, you’re getting the whole picture and you will probably have a few “a ha”s – the school staff will likely have the same if you share some backstory with them.

If you are doing a full IEP review at the same time, ask for a copy of the meeting notes and make sure to reserve some time for thought about possible changes or time allocations to the SPED services that are available. For AS, many school districts have a social skills group that would be a great suggestion as part of the kid’s at-school experience. And – it never hurts to ask what the staff thinks should be changed, if anything; you may disagree with their opinion, but the IEP is yours to modify.

Hopefully these things help.

Posted in asperger, behavior, family, school | Tagged: , , , , , | Leave a Comment »

Stumping for Colorado A51

Posted by Patrick on 19 October 2008

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.

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A (Brief) Update

Posted by Patrick on 22 September 2008

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.

Cheers,
Patrick

Posted in asperger, behavior, behavioral psychology, family, outreach, school | Leave a Comment »

A Completed Evaluation (finally) and its Diagnosis

Posted by Patrick on 3 September 2008

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.

More to come; stay tuned.

Posted in asperger, behavioral psychology, family, outreach | 2 Comments »

Prelude to a Diagnosis

Posted by Patrick on 5 July 2008

So, I haven’t written in awhile, and for that I apologize. But I owe a follow-up to our endeavor at the hospital in which we are seeking official, medical diagnosis/clearance for one of our sons.

We have met with a developmental pediatrician, and we have done a preliminary interview with a clinical child psychologist. That’s (still) all we’ve gotten done with the hospital. What remains is a battery of testing from the psychologist, which won’t be possible until at least August (we’ve been waiting since last September) The result of the pediatrician visit was a report of findings which, while certainly valid, also yielded that it would truly be up to the psychologist to make a more accurate diagnosis.

What we got in the ped’s report is “autism spectrum disorder …[which is] symptomatic of Asperger’s Syndrome”. During the appointment we got a verbal heads-up that this was coming in our report, and that it would need to be dialed in by the psychologist; however, the ped felt pretty comfortable with the diagnosis based on his observations and his own test results.

So, with that, I want to sidebar and say that this is what we expected. We tried not to lead the doctors down this path; rather, we wanted them to tell us what their diagnosis is instead of us persuading them into this based on confirmation of what we knew were exhibited symptoms. I feel pretty good that we got an unbiased evaluation from a doctor who “knows his stuff” in this area.

When I have more news, I’ll post again. AS is on vacation this month, so I don’t have any real updates on him right now.

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A Diagnosis Follow-Up

Posted by Patrick on 8 June 2008

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.

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Asperger’s Syndrome and an Official Diagnosis

Posted by Patrick on 2 May 2008

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.

Posted in asperger, family, outreach | 4 Comments »

Asperger’s Syndrome Buys a House

Posted by Patrick on 1 May 2008

What a wonderful experience it is to buy a house. It’s oh so painless, and every possible thing that can go right always does, especially on the selling end of making a move.

If you believe those 2 sentences, sorry; they’re meant to be a bit of cheek versus the deplorable tasks involved with selling and buying a new home. Combine those daunting chores with AS and, well, you’ve got a proverbial party for sure. In this post, I’ll describe some of my own experiences.

Our realtor’s name is Steve. I tell my AS son that “Mr. Steve is coming and we’re going to see new houses today”. How do you think that was interpreted? Well, first it was alleged that we were actually going to the doctor and he didn’t want to go because he didn’t want to get any shots today. When I explained that Mr. Steve is not a doctor, we were then subverting him into going to the dentist, which he also will not be attending today. Then, rather flatly, I was informed “I am going to the TV doctor, do you understand?” (the TV doctor is the eye doctor – different post)

Of course we understand; he has AS, so every new event is first catastrophic as the typical AS child first aims for the worst and then improves their outlook slowly as situations become less ambiguous.

Mr. Steve arrives – wailing tears ensue. It’s one of those uber-loud shrieking fits that’s normally equated to a harpy or pterodactyl. But – and lucky for us – when Mr. Steve whipped out pictures of houses instead of a blister pack full of syringes and vaccines, the wailing stopped. In fact, it didn’t just stop – it ceased to exist as if I’d pressed his mute button not a moment before. AS Parents, we have all been in this situation.

So, as AS children often do, our son found his comfort with Steve and proceeded to be his little helper for the rest of the day. By the time we visited our last house, he was running up to doors to show Steve where the lockbox is, and then showing Steve how to retrieve the key once the combination was entered. Yes, he’s 4, but he’s a pretty smart 4.

***

I wrote the above parts of this post in March and never finished it, so I’m here to finish it now. We are still house shopping, and we are still selling our place as well. Not much has changed there. AS has decided that when we have a showing, we’re going somewhere so “Mr. Steve can come play inside”.

The point of this post is to further demonstrate that typical AS children are both rigid in their minds and also hugely in touch with their surroundings. Where we parents find our center with our AS children is when we can provide a pleasant blend of both form and opportunity.

There is no “mold” that can be broken on children with AS; they won’t just wake up one morning and suddenly not be afraid of new stuff and be completely open-ended kids. If we parents try to set that as a goal, we fail before we begin raising them.

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Asperger’s Syndrome and its Companions

Posted by Patrick on 28 January 2008

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:

* Attention Deficit Hyperactivity Disorder (ADHD)
* Oppositional Defiant Disorder (ODD)
* Depression (Major Depressive Disorder or Adjustment Disorder with Depressed Mood)
* Bipolar Disorder
* Generalized Anxiety Disorder
* Obsessive Compulsive Disorder

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.

Posted in asperger, behavior, behavioral psychology, family, outreach | Tagged: , , , , | 1 Comment »

 
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