A Parent’s Prejudice Against Asperger’s

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?

IEP for ASD Parent-Teacher Conference cliffs notes

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.

A (Brief) Update

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

Prelude to a Diagnosis

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.

Asperger’s Syndrome and its Companions

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.

Asperger’s Syndrome and Changing a Routine

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.

Asperger’s Syndrome and the Power of Choices

Unruly. Undisciplined. Untameable. Unstoppable. Unbelievable. We all have our un- word to describe our aspie at their worst moments. AS parents also know very well that we can often do little but make the situation worse by trying to actually be a parent in those times. If parenting skills are useless, what do we have left? Ah, but parenting skills are far from useless, at least in my case. What I find useful with AS in my house is the pure power of letting the kids make choices. Let me explain.

I should say up front that I’ve learned first-hand this technique is more powerful with AS children than it is with synaptically normal kids. Why that is – aspie kids thrive on structure, rigidity and order. When they deluge into chaos, this technique is an effective method to insert those qualities which the average AS kid craves. Normal kids may or may not, depending on age and developmental capacity, be able to discern decision making from any other parenting technique because it may not be something they desire.

So, how do I do it such that it’s effective? I’m sure you’re wondering. I do have some tips and advice to share. First let’s set the mindset of the parent before attempting to use this technique.

• You must, as a parent, abstract your personally-bound emotions from the situation and be an empathetic enabler.
• Maintain a level head and do not play the emotions of the child.
• Your child is not weak, and in their own mind they are doing nothing improper. You should understand that very clearly so as not to dole out punishment unjustly. Chances are that the child will not understand the intent or basis of the punishment.

Now let’s talk about the actual decision process a little bit. Here are the things that work for me:

• As with all children, tone of voice is critical – it is the most important element of the message you wish to deliver. If your voice is scornful, you will be ignored or feared, but not heard. If you are airy and hyper-gentle, your message will be heard but lost. Find a middle-ground here. I like to think of the Mister Rogers demeanor when framing my own voice. Something firm but soft, and gentle.
• Be sincere. This is especially true with kids over 5 who can deduce that they are being deceived. You must present your child with 2 truthful choices, else you will not be effective ever again with this method. AS children often do not forget when they are wronged.
• Analyze what you’d like your child to do. Break down the end state into smaller tasks if necessary and present more than one set of choices. Here’s an example: kid likes but for some reason doesn’t want to eat broccoli and is having a meltdown because it’s on the plate. First question: “would you like to eat your broccoli or would you like to sit quietly and not eat?” notice that you have an out that’s enforcable. Second question: if the kid chooses to eat, “would you like to use your fork or spoon?” or something similar.
• Reward them if they fall back in line with your regular expectations, depending on the situation

I promise you this is an effective technique. It gets me through so many chores with both of my children, but especially with AS. What techinques do you use? Have you tried the decision path method described here and had success? Had failures? I’d like to know.

Asperger’s Syndrome Goes Out to Eat

Parents, I empathize with you in writing this post.  Yes, I’m talking this time about the sometimes-joyous, often-difficult experience of taking our AS child(ren) out of the house for a meal at a restaurant.  Some parents dread it, others are unphased by it, and I am somewhere on the low end of concerned by it, just to make a comparison.

In this episode, AS goes to a local dine-in Mexican restaurant.  As Denver is very populated with a large Hispanic community, most of whom come up from Mexico, you can assume safely that there are some very, VERY good Mexican restaurants in most neighborhoods with reasonable prices.  Most have 1 or 2 amazing dishes – at this restaurant, the speed of service is legendary and the food is wonderful.  Nonetheless, I digress.  So AS goes to a local restaurant.  What’s the routine?

I find it very helpful to sit in the same family configuration used when we eat at home.  AS sits to my right, his mother on his right, and our younger, non-AS son on her right/my left.  We try to sit in booths at restaurants, so AS and mom sit in one seat and my younger son and I share the other, but we are in that same pattern.  If we were playing bridge/hearts/spades then the kids would be partners, if that helps visualize.

Mexican places work especially well because they immediately have something to munch on at the table (chips/salsa). AS can’t wait when he sits down – it is always time to eat at that very moment.  Generally, we order him something similar to our own food – we purposely avoid getting something childish from the kids’ menu, else he would be getting a burger everywhere we go and he’d grow up thinking all restaurants ever serve is burgers (they are all the same).  It also helps him see that he is “a big boy” because he gets the same kind of food as mom and dad and he gets the same-sized fork and spoon as we do.

So what’s the struggle, you ask?  Well, I’ll say up front that both of our sons are not very picky; they will eat anything we give them at least once – the range is from squid to spaghetti and all items in between.  AS is particularly fond of cherry tomatoes, daikon radish, corn on the cob, red cabbage, and steamed rice (he’s half Japanese, after all).  But imagine the woe when what he orders contains something he doesn’t want/like; imagine the woe when the food is too hot and he’s starving; imagine the woe when AS wants to eat something that the restaurant doesn’t serve.  What do you do? What do we do? I’ll tell you.

First, because AS has a penchant for forgetting he is indoors and thus begins yelling, I remind him that we are not only not at home, but we are inside somewhere else.  Second, in a very calm tone I deal in small, compartmentalized choices for him that he can understand.  An example chain of this is, “AS, do you want to eat dinner or sit quietly by yourself?” (he always answers “eat”).  Next -> “AS, do you want to eat A first, or B first?” sticking to items on his plate. (either answer). Next -> “AS, do you want a spoon or a fork to eat A/B?” and that usually settles it.

I really do recommend using choices with your AS child where possible.  The key, which I think I’ve said in a previous post, is two-fold:  your tone of voice must be calm, sincere, and gentle.  Don’t be fake; don’t be angry; don’t be wishy-washy – kids are worth more than that.  Just be a parent with a level head at this point.  The second key is to make the choices realistic and obvious.  By obvious I mean give them options for which they understand the meaning – don’t be abstract, kids don’t know that A means A, B and C until they are older.  If you try this and it doesn’t work off the bat, don’t give up.  You’re actually helping your child’s decision-making skills by doing this, and you’re helping yourself put a quick end to often difficult situations.  Maybe this is worth a separate post; that’ll be the next one perhaps.

Wrapping up, let me hear your feedback. What do you do that works for you? How do you tackle outings at places like restaurants that are bound to fail for some miniscule reason?  What advice can you give to other parents?  The comment lines are now open…

Asperger’s Syndrome Goes Bowling

Well, it was MLK day in the US, so I was off work and the boys were out of school (only my aspie goes to school on Mondays anyway). We decided that we’d go out to have a family lunch (another post unto itself) and then try our hand at bowling. The bowling outing, I must say, was much anticipated after my aspie learned how to maneuver through Wii bowling (the Wii Sports version, not the full-on bowling game that’s out there). Though he lacks some actual technique, which I don’t expect him to have at 4 years old, he is actually pretty good at the game version and has beaten me a few times.

We chose an AMF bowling center near the house, mostly because it is near the house and if things went very badly, we didn’t have far to go to get home. I was more concerned with energy levels depleting in both of our boys than anything else since it was immediately after a large Mexican lunch. However, we didn’t have issues.

The hardest part of the bowling experience… well ok the most difficult of the difficult parts… was when we first arrived and had to endure a 20-minute wait to get a lane. All aspie parents deal with impatience – I believe I deal with a severe case of impatience by comparison and I have a less stressful time in other areas typically troubling for autistic kids’ parents. Fortunately, this center had a game room. At 4, my kids are still happy to be toying around with the games and not whimpering to shovel money into them to actually play; I’m thankful for that, because every game at this place was 50 cents or more and appeared to be pretty short games. Nonetheless, we got through this with minimal kicking and screaming.

Bowling itself was an amazing event. My aspie is actually intelligent above age level in many functional areas, and severely deficient in a few others. For example, at 4 he can count to 100 and can multiply (yes, multiply) up to 5×5 in his head, but he can’t read very well (out of disinterest) and he has difficulty using logic to solve problems. He is bi-lingual in Japanese and English and knows age-appropriate ASL, but he has trouble with sentence structure. Anyway, off subject. Bowling was an amazing event, as I said. He’d never been to an actual bowling alley before, so the location itself was pretty high sensory overload. They were doing cosmic bowling or whatever where they turn on a bunch of blacklights and then strobe all these disco-esque things all over the lanes with party lights — it’s great for kids but if you actually want to bowl it’s hard.

The first time he went to bowl, I had to show him the proper way to hold and roll a ball. This didn’t go well. He has the coordination to perform the throwing motion, but the 6-pound ball was too heavy for his fingers to carry, so we went with the “granny shot” between-the-legs push instead. This was great — after 3 times of accompanying him to the foul line to ensure he didn’t fall on his face, he spent the rest of the time going through the entire routine by himself. When it was my turn, he was anxious enough to show me which ball was mine and how much it weighed so I would hurry up. I abstracted myself a little bit from the experience and saw a miniature rain man going through his routine from start to finish every time it was his turn. It was quite an experience. Plus he scored an 85 and nearly beat his mother, so it was fun for everyone.

I detail this account not out of pure desire to recollect a positive experience, but to provide some insight into the inner workings of my son. Every child with AS is different in their own way; I feel fortunate to have a son with full motor skills and strong academic capacity.

What I want to hear from those who read this blog are some of your own positive experiences, some types of activities that work well for your child(ren), or some other things that you do to pass the time in a positive, successful way. Hopefully the things that are shared here create some ideas for other AS parents who are searching for answers or options.

The Economy of Asperger’s Syndrome

Here’s something that we do in my household with our children. My older son has AS as my loyal readers know, so this exercise is mainly for him, but this is an effective tool for all children; “synaptically normal” regular children would hopefully catch on at least as quickly as an AS child and be able to be influenced by it.

We use a full-scale economy with our two boys – by this, I mean that we have a serious collection of fake money (that we got from the Lakeshore store at Park Meadows) that our boys can earn with their good behavior. By that same token, they can certainly be issued citations and lose money for poor behavior; yes, we actually write citations out (we also got them from Lakeshore) so that we have a written record of why each child lost some of their money. The point is, our children can use their money to buy from our special prize vault.

Things in the prize vault aren’t always toys. Think of things that your children like enough that they’d be motivated to earn money for buying them. These could be toys, but they may also be things like a trip to somewhere they like, or it may be some movie they want to see or even small prizes like candy – use your imagination but don’t spend a lot of money building up vault.

What I recommend to get something like this up and running are a few things:

1. Buy your prizes in advance.
2. Let your children see what you’re buying, and let them know that those things are going in the prize vault. By no means do you let them play with, open, or otherwise get accustomed to what you’re buying – that detracts from their motivation to “earn” it.
3. Let your children help place a price on the items you’re buying. If you’re using currency-style fake money, you may choose to price items at their actual register price; but if you’re not spending much, that means they’re not earning much to get the things you’ve bought. In our house, the minimum is 4x cost for anything <$1 when the kids don’t place a higher value.
4. Keep the prize vault somewhere that children cannot get to, for obvious reasons.
5. Don’t spend a lot of money.

The key to this system being effective is to enforce it. What we have done is made a very short list (our children are very young) of tasks for which money will be lost. My recommendation is 1 list item per year of age, so that the list is easily remembered. This is where your parenting skills are tested — when it’s time to subtract money, don’t be rash, upset, scornful, or mean; all you must do is notify them that they’re losing money and then show them that you are taking it out of their storage bin. Once your kids begin to realize that they can’t buy the things they want, they begin to understand the value of their behavior.

Granted, AS children don’t deal well with failure; they don’t deal well with negation and they don’t often understand what about their behavior warranted the demerits. That’s where the list of bad actions is critical; that’s where the tone of your voice is critical; that’s where you need to show that you love your children but that you also have to be fair. Sure, there might be some whimpering and some pent-up anger the first few times; in fact, there is likely to be some with any AS child regardless of the failure’s severity. Stay the course; this system is working wonderfully.

My favorite book for AS parenting tips is still Brenda Boyd’s Parenting a Child with Asperger Syndrome; in this book there is a pretty detailed list of things that one family put in their prize vault – it includes a range of toys, sweets, and special visits/trips like what I described.

What’s in our prize vault? Here’s my current list. As a side note, we are set up to let our boys earn about $1/day if there are no setbacks; more if they are especially good/helpful. For times when they are well above and beyond their years (I mean 3 and 4), we give them a blindfolded, free pick from the bucket-o-stuff.

toys
8x hotwheels cars @ $5
2x tonka trucks @$15
3x Thomas train cars @$10
4x activity books @$5
1x (grand prize) hot wheels play city @$50

candy
12x charms blow-pops @ $1
dove milk chocolates @ $0.50
m&m fun packs @$0.50
ice cream drumsticks@$2

other
1x trip to chuck-e-cheese’s @$25
1x trip to cici’s @$20
1x family movie night (at the theater) @$20
1x mystery prize (it’s a coloring book) @ $10
2x lunch at papa’s office @$10