Raising Asperger's Kids

No matter what I do with HSB and collegeman they have a glitch between the napkin on their lap and their mouths. In variably HSB will come home from school with peanut butter all over his shirt. I ask him everyday what happened to his napkin and he says it was still there. Collegeman will not pick the napkin up and use it to wipe his mouth unless you tell him. It just sits there on his lap and when he eats pasta and sauce he will walk around with tomato mouth ring all day if we let him. Yesterday HSB did the same thing.

Now it’s not like we have not taught them manners. It’s not as if they had not been eating with utensils, napkins, place setting since they could sit upright. It’s not like etiquette was not taught in this home. It’s not that proper social graces are not taught in this home. I just can’t figure it out. How come these two rather intelligent young men, whom I know, know how to take care of themselves appropriately, have never gotten the hang of the napkin?

Aspergers you say. Well, that goes just so far. The aspergers is the reason they need to be taught on a constant basis about socials kills and life skills. But it is not the reason that they are pigs. I could blame their lack of executive functioning skills on their table manners. But that would be a copout too. I could blame it on the attention issues; they can’t focus enough to figure out what to do with the napkin. But they focus enough to eat their food (OK with collegeman not so much, he can get distracted at meal time, but HSB has no problem putting food from the plate into the stomach). I could blame it on their OCD, but then that totally would make no sense, because you would think that with being obsessive compulsive one of the things they would want is to make sure that their face is clean. They do like looking nice and appearing nice and smelling nice in public. So it’s definitely not the OCD causing this issue. I could blame it on their memory lapses. Maybe they forget what to do with the napkin? That one would work, possibly for HSB; memory issues are a true concern for him, but not for collegeman.  Yet then again anything HSB reads he remembers almost verbatim, it’s the auditory instruction he has issue with (hmmm maybe a cue card? No not really a good idea…never mind) No memory can’t be it; they remember full well what that piece of paper on their lap is for.

I think that the reason they don’t remember to wipe their mouths while, and after eating is simply because they are teenagers. Yeah I’m gonna go with that. So for a change something that is happening with both boys that probably has nothing or very little to do with their aspergers and more to do with the fact that they are teenage boys. There just seems to be a hump that they are just not ready to get over when it comes to functioning in the real world.  I’m not talking about the social and life skill sets that they are behind on, this is very different. I am talking about that teenage boy look of being lost in a space-time-continuum. Scientists tell us that the teenage brain is underdeveloped. That there is a disconnect between hemispheres and that that effects their ability to make good judgments. Well, I think that that disconnect also affects their ability to remember what to do with a napkin, in much the same way that they forget to put the cap on the toothpaste, close their draws of their dressers and put their dirty clothes in the hamper. Never mind blankly stare at you when you tell them that their office is a mess and it has to be organized.

I know I’ve written about the organizational issues when it comes to aspies (here, here), but this is so totally different. This isn’t about not knowing where their homework assignment went to or how everything is piled on the floor of their room. This is the stereotypical, old dishes under the bed and you can’t figure out what the smell is situation. This is one of those times when you look at your child, whom you know knows what is going on and ask, did it not dawn on you that the dishes on your desk need to be put in the sink and that the orange peels that have started to turn into penicillin need to be thrown away? You would think that if they wanted clean underwear, they would understand the concept of the hamper as opposed to going commando to school and then having to change for gym without any underwear on in front of their peers. It doesn’t faze them ever.  Nothing dawns on them.

They have chores that they do every week at home. Simple easy chores since they are in school. When the hamper gets filled up bring the dirty clothes to the laundry room. Every week they need to vacuum, dust and mop. That is all, and they never do it unless I tell them. They would get all annoyed about me, the micromanager, so I stopped micromanaging and put the chores on their white boards. Three weeks nothing got done. I found hubby vacuuming at 2 in the morning because he just couldn’t stand it anymore. So we went back to me telling them every week to do their chores and they then went back to getting annoyed that I micromanage. Sorry but this is not aspie nonsense, this is full blown teenage pain in the ass nonsense.

I know it is hard to parcel out whether what is going on is the aspie in your child or age appropriate rebellion or ding battiness. But believe you me, this I just know, what is happening with the boys today has nothing to do with their aspergers.  These boys are taking teenage ditziness to a new height when it comes to the home and their person. I remember that movie Clueless, when Cher is explaining about high school boys and how they rollout of bed and put on a baseball cap backwards and the girls are expected to swoon, AS IF, is her response. I’m going to use it as mine too, when my boys ask me why something they had to participate in didn’t get done because they  ditzed out, I am going to respond with a simple, “as if” who is going to do it for you.

You know, I look at them and see not teenage aspies, but teenage boys, whom at times you just want to knock some sense into. You want to take them and shake them and tell them to wake up and get a clue. You want to tell them to remove themselves from whatever nether world they inhabit and join the real world where dirty dishes go in the sink, garbage ends up in the garbage can, clothes in the hamper end up in the laundry and the paper on their lap-the napkin-gets used to wipe the tomato sauce off their face. I know it’s just a matter of time that the hemispheres of their brain will engage and they will enter the world of common sense and leave the fog in which they live. But until that time I am going to learn to close the door, do raids on the garbage and plates in their rooms,  nag them about their chores and bide my time until neuroscience can find a cure for being a teenager. On second thought I really hope they never do. There is something to be said for extending childhood into adolescence into teenage hood. There is something to be said for the time when it’s really not a matter of life and death because you forgot to do your chores, clean your room, or use a napkin. Adulthood will happen of this I am sure, you see all it takes is one big smile out of the both of them and I see the charm that is in their souls and the men that they will one day be. Hopefully by then they will have learned how to use a napkin and will not walk around with tomato ring mouth.

 

Until next time,

 

Elise

So here’s a subject I had never really thought about in great detail. I was on twitter and came across an issue tweeted by Sharon daVanport (blog-talk radio, twitter,  facebook) a director of the Autism Women’s Network (AWN). Someone in the forum had been harassed by the police for no reason. Their story goes that they had been eating in Subway and when this person went out to their car two police officers called the person by name and surrounded the writer. The person had no idea who they were even though they evidently knew the poster. They refused to let the poster leave until the poster answered how she was.  They then followed her in their cruiser for several blocks. The poster was scared, confused and frightened. She asked for help. What should she have done? Did she do anything to warrant the police officers harassment? I feel frustrated because I had no way to help this person. I have no idea what if any advice really exists to give her. The police obviously were harassing this young person. They obviously thought it was funny knowingly upsetting her. Then why did they do it? Well, I think we all know the reason for that; some policemen are not peace officers but bullies with a badge. But the reality is, how often will our children face a situation like this and how do we teach them to handle it?

I know that I live in a very small town and that the police chief knows my husband from the Community Emergency Response Team. Hubby is the chairperson of the all volunteer group and was just responsible for setting up the shelter in our town during the snowicane.  I know that there are only 20 police officers in our town all together and that they tend to be respectful and good people. I have seen them in town when the middle school gets out, directing traffic around the miscreant adolescents, usually yelling at the kids to get out of the way of the cars, but for the most part, not interfering in youthful fun.  I have dealt with them myself when I was a lecturer for the Juvenile Law Center, when I lectured middle schoolers about their rights and obligations under law in society.  They all seemed nice and genuine about their desire to help the kids. Only once did I detect a swagger, where the officer barreled his way into class, with a pistol on his hip and two deputies at his side.  Truthfully the kids ate it up.

Personally, I have never had to deal with an abusive, aggressive or rude police officer in my life. Well, once in Boston as a college student when hubby made a wrong turn in the car. We were lost and very confused. But I think the Yankees had just clobbered the Red Socks once again and the Bostonians take their baseball just a little too seriously for my taste. But for the most part whenever I have shown respect to a police officer no matter where I was, the respect was returned. Funny though, how such incidents stay with you. This happened decades ago and I can still see that police officer's face, see his march fom the car and I feel the surprise at his hostility. I was taken aback and truthfully a little scared at that moment. So I totally sympathize with the poster on AWN.

However,  I have to say, in the back of my mind I always think about the boys in relationship to police officers or some form of authority figure. I know they do not look people in the eye and they do not always answer right away. Those trained to catch liars are not trained to understand autism. I am afraid that the boys’ hesitancy and their indirectness may be misconstrued. I know it has to be an issue because the author Jodi Picoult just wrote a book with an aspie protagonist who gets in trouble with the police for those reasons.(No I have not read the book, but if I do I will let everyone know what I think).

I try to teach them to be respectful of police officers. I try to teach them to make eye contact and answer when spoke to. I teach them that police officers are their friends and there to help you. I teach them that behavior is everything and that people judge you by what you do and say. I teach them that as they grow into young men, meltdowns in public will bring the police and that people will not look kindly upon any societal infraction. I teach them that they cannot yell at strangers. I teach them that they should not grouse under their breath or act strange in any way. (It is hard to tell them how to behave and to make sure that they listen and practice. So much they still cannot control when they get overwhelmed. They are both terribly rude when they are at their most anxious and I would think if they are stopped by the police their anxiety would go through the roof. Rudeness is not going to be understood by a police officer, and especially not appreciated.)

I teach them to obey the law. I teach them that just because they have aspergers does not mean they will not be punished if they break the law. I make sure on their medical alert necklace has their diagnosis of aspergers on it and that there are emergency numbers with a list of medications as well. It is for medical purposes but it is also an instrument of security, that if they ever do get stopped they can show it to the police officer who just might read what it says.

I know that there are programs out there that train police officers to become aware of autism and how to deal with it. I know that there are programs where you can register your child and their disability with the police. But in a big city how much training would the officer actually get? How much time would they have to understand what is going on? Police officers are faced with life and death decisions that at times need to be made in a split second. Are they going to endanger themselves because they are not sure if the person having a meltdown is dangerous or is that person autistic?

I know this doesn’t answer the question of the young autistic person who was hassled by the police just because she wanted to eat lunch. I know that this post doesn’t answer any questions, it just raises them. I guess I have no answers myself, except to teach my boys how to behave and that they must always always be respectful to a police officer. I teach them that they must always obey the law and expect punishment if they don’t.

Luckily neither one thinks law is a joke. When collegman was 5 he took something out of a store by hiding it in his coat pocket. After we walked way he showed me what he had. I marched him right back to the store and had the store manager talk to him. Now that was a nice man and he told him that what he did was stealing and that it was a crime. That if he took from a store he could go to jail. Now I think it effected both boys, because to this day, neither one will even drink a soda in the supermarket until I pay for it, even if I tell them to just hold on to the bottle and show it to the checkout person and tell them that you  drank the drink. No, no they will not drink it or eat anything from the cart, even a cookie from a bag full of cookies. Actually I let it be. It’s a good lesson. Let them be scrupulously honest. It’s ok. We live our lives that way too. In fact, as we leave a store to this day, collegeman still asks me if I have paid for everything. (I guess politics is not in their future)

But still I worry about the authority figure who thinks it’s funny to harass someone who is defenseless or without the ability to fight back in anyway.  What do I tell my children, if the people who are supposed to protect them turn into the bullies they’ve had to deal with all their lives? There are post incident actions, sure. You can file a complaint and bring a lawsuit. But what do you tell them to do in the middle of the incident other than to be good and try to be respectful? I wish I had an answer for them and I wish I had an answer for that poster in the AWN website. But I don’t and that scares and saddens me.

 

Until next time,

 

Elise

I have decided that I am tired of being tired. It’s not even that bone aching tired that you remember from parenting an infant. I would not even call it sleep deprived, even though as parents of autistic children we all know what it means when our children’s rhythms are off and they can’t sleep. How we stay up with them, night after night and adjust our lives to their world view and inner clock. No I am not talking about that kind of tired. I am talking about a different much more ingrained tiredness that effects how we think and feel. How our brain works and how we perceive the world.

I am tired of all the stress. It seems that there is a never ending barrage of stress related issues that just don’t let up. On the regular front you have the economy.  Oh boy do you have the economy. I was watching the news and they talked about growth and economic indicators and how everything was starting to look so much better. For whom may I ask? So many of my friends are out of work.  So many who still have a job are being paid less than they were just a few years ago for double the work. The news talked about a decline in wholesale prices. Where and for whom? I haven’t seen it and you can rest assured no one else I know has either. Food prices went down they say. You know it’s not like we eat steak but every time I go to the grocery I pay more for less. My electric and gas bill hasn’t gone down. Car and appliance repairs remain the same. Clothes are no cheaper.  They talk about lower vacation prices, who has money for vacations? Hell we had stopped going on vacation before the recession. I don’t get it and I don’t see it. And this is just the regular everyday cost of living. I haven’t even talked about the medical costs.

Now these medical expenses are a killer and we all know that. No one charges less. The cost of medicine hasn’t declined. I have to say my insurance company hasn’t decided to give me a break on my co-pays or my premiums. If anything everything went up. However, luckily we do have insurance and at least it pays for something for the boys. It’s ironic you know, that the things I truly need help with, like the therapies, and the life and classroom coaches no one can be bothered to help with. But I am expected to help everyone else. (Now you know that we are a charitable (here)family. But it gets tiresome when the world only approaches you with their hand out and not a hand up) I even thought about registering collegeman with the state disability authority to get some support, until they told me that the support he needs (coaches/aides)they don’t supply for those with invisible disabilities. I am so tired of those in Congress telling me how “rich” I am and thinking of new ways to take my money and throw it away on garbage. But most of all I want to know, when does someone help us? When does someone who has control over the day to day existence of people actually truly give a damn? Don’t tell me the healthcare bill will fix that, it doesn’t. Read here for why.

There is the bright side of course. Collegeman is doing so much better in school. His behavior is great. I just received an email from the disability director that collegeman’s history professor even told her that he is much improved. We know he is becoming more social and even accepting the fact that people really like him, they really do. Highschoolboy is on track, or for what passes for on track for HSB, can’t really tell for sure with him sometimes. Of course, with HSB it’s different kinds of issues than with his older brother. HSB is less the 16 year old aspie and more the 16year old 16 year old. That is, in and of itself, an interesting conundrum for me. You see with all my experience with collegeman and his adolescence I have never had to deal with “normal” teenage issues. Let me tell you, they are a challenge, but truthfully with the boys, it’s all good. At present we are on an upward swing.

Yet I still worry, I worry all the time for them. I know it’s a normal parent state of mind, but I think our worries, when you have autistic children, are very different than the average family’s worries. No matter how functional your children are, there is always that nagging little man in the back of your head saying what if.  What if, at every stage of their development and what if, at every stage of a new experience; what if, at every stage of them just walking out the door. While it is a given that an average child will grow into a self-sufficient adult, it is not a given for our children no matter what we do. Yes, the higher functioning, the more chance they have. The higher functioning the more chance they have to have the life we want for them, but society has to comply, and that is what worries me. I don’t like leaving my children’s future in the hand of some unnamed, unseen force called society. I don’t trust society. I trust myself, society has its own agenda and I am not sure that my children fit into society’s vision of the future.

The truth of the matter is, is that I am tired of being frightened. Sometimes I am frightened all the time. I used to blame my sleepless nights on menopause, or a late in the day coffee, or that glass of wine with dinner. But in truth I don’t sleep because I am frightened. I realized we, like most Americans in today’s world, live frightened. We live with such angst and anxiety about the world in which we live that we don’t sleep. Add to that the worries that come along with parenting an autistic child and it just runs you down. Unfortunately, I don’t think I will stop being frightened anytime soon. But perhaps we can be frightened together. Maybe that will help. It might not help me sleep, but at least we can commiserate and give each other a hand-up.

Until next time,

 

Elise

Squidalicious (aka @shannonrosa) has written a blog about fully funding the IDEA. Let's see if we can add our voices to the cacophony of sound on Capital Hill. Sometimes, advocating isn't always just about the school and the playground. Let's do it people.

 

Until next time,

 

 

Elise

No I am not going to discuss the Ali-Foreman fight. But what I can tell you is that Ali and Foreman had nothing on my two boys. Let me tell you when the rounds start going here, the rounds start going. Now it’s not always fisticuffs in fact most of the time it’s just plenty of mean words.  Which believe you me is bad enough. Punches may sting for awhile but those words can be damaging. And with two boys with OCD who never relent, sometimes the fighting just goes on and on and on.

I have told you stories about how the boys can’t agree on anything. How even at holiday dinners they need to be sat at opposite ends of a table because the entire meal is spent arguing about the existence of God. I do have to tell you it is tiresome. No not tiresome in the fatigues sort of body ache way, but tiresome in the enough already way. Get over it and get over yourselves. I try to tell them. People are entitled to their opinions and their opinions don’t have to agree. Of course, then you turn on the news and everyone is just so polite and respectful, NOT.

But what do you do when it’s your home and your children can’t and won’t get along. It is a very interesting problem. At least in many homes there is a neurotypical sibling whom you can try to reason with. But here in this house, with two aspies on board, it’s like arguing with two brick walls. Now don’t get me wrong, you can argue with them, you can reason with them, you can talk to them like civil humans beings and have a wonderful articulate discussion about almost anything in the world, except their sibling.

The irony that surrounds their relationship is that HSB emerged from the womb in love with his older brother. I know they say that infants don’t smile or react to people right away, but I will tell you that the only time HSB lit up as a newborn or smiled, was when collegeman was around. You saw it in his face. He lit up. His little arms would start going and you could just tell that the person he loved most in the world had just came near him. This attitude continued throughout their childhood. HSB was collegeman’s protector. Like the time I grabbed him from attacking a counselor at camp whom he thought had made his brother cry. Heaven forbid you made collegeman upset, his enforcer, HSB, would have a word with you and would make you an offer you couldn’t refuse where collegeman was concerned.

But then something very interesting started to happen. HSB realized that he was his own person. It happened some time in middle school. HSB started coming into his own, which also meant that he didn’t listen to everything that collegeman told him. Boy did collegeman not catch on to that right away. In fact it was just something collegeman was neither about to acknowledge nor relinquish the control that he had once had on his younger brother. You see it had become the way life was. Collegeman said to HSB, “jump”, and HSB would reply, “How high?” Not anymore I’m afraid. Collegeman never really took well to the change.

It wasn’t the adulation so much that he missed. I am not even sure he understood how much his brother looked up to him. But it was more that collegeman thought of himself as HSB’s mentor or sensei. Collegeman decided it was he who would guide his brother through the trials and tribulations of life. For awhile it worked out well. But then HSB decided to try life on his terms not anyone else’s. Not a good move where collegeman was concerned.

Now it has gotten so bad that if collegeman even makes a suggestion to HSB, HSB automatically rejects it without giving it another thought. It’s a knee-jerk reaction to what he perceives as his brother being a budinsky. Now I do have to tell you that collegeman is at that wonderful stage in life, when our brilliant and delightful and joyful offspring think they know everything. Collegeman has decided that he is going to teach everyone, including his father and me.

I do have to tell you that I try to emphasize to collegeman how to act and how to behave when he interacts with people. When collegeman was entering college and he was excited because he thought he was done with bullies and assholes, I did put a damper on his euphoria a little. I had to explain to him that no matter where you go in life there will always be that one asshole. The trick, I told him, is to not be the asshole. Then you will be ok. I am afraid at times; collegeman can be the know-it-all asshole in the room, and especially with his brother. So therein lies the rub. How do we get collegeman to let HSB figure things out on his own and teach him how not to get insulted by  HSB’s independence thereby starting a commotion. Meanwhile HSB has to learn to be gracious about his brother’s advice, not get insulted by collegeman’s attempts to help and then start a commotion of his own. It really is two sides of the same coin.

Yesterday was what I termed the last straw for me. We were in the barbershop, both getting their hair cut. Not really a big deal and not really a traumatic event. They go. It gets cut. We pay. We go home. Done. Not yesterday.  HSB has taken to saying silly one-liners he reads off his favorite websites. They are in context in his mind but generally out of context for the rest of the world. Well HSB let out a one-liner. I was going to correct him but before I got there off spouts collegeman, yelling at his brother to shut up. HSB then of course gets insulted and they begin, in a crowded barbershop, to yell at each other.  People talk about stares when your little children misbehave because of their issues in public, guess what kind of stares I received yesterday when my full grown pain in the asses started yelling at each other in public.

Needless to say, I moved in quick and for the kill.  Shut them both up in a never you mind parental, I will punish you, shut your mouths mode sort of way. They got quiet, but there was the perpetual scowl on collegeman’s face and a grumpy demeanor. The rest of the visit was uneventful and successful. The boys ended up with haircuts. We paid and we left. But just outside the barbershop I saw the looks again and turned on them in the middle of the street. I did that mom with the finger in your face and chastised them both as being ridiculous and above all embarrassing themselves and me in front of people in the town. Told them they are 16 and 19 and need to act their ages. That they were to shut up, stop fighting and cut in out or I will make them miserable. Even when we got in the car I had to tell collegeman to wipe the scowl off his face.

Sometimes I am just at my wits end when they fight like that. The best part about yesterday was when collegeman told me he was going to have to teach Jared because he, not I, knew how to parent his brother. Just use your imagination with what came next out of my mouth.

I know that in reality collegeman means well when he tries to teach HSB. He sees issues that HSB has and wants to fix them and is frustrated that HSB does not seem to try to fix the issues himself. He doesn’t understand why HSB doesn’t take school as serious as he should and why he doesn’t seem to work hard. Yep that parts frustrating for us too. We do try to teach collegeman that even though it’s frustrating he should let us handle it or allow HSB to make his mistakes. So of course collegeman goes the other direction and declares HSB a nonperson and doesn’t talk to him at all. We tend to have extremes in this house; nothing is ever half-way.

HSB for his part should not push his brother’s buttons. Now you may ask does he even know when he does that. Yeah I’m pretty sure he does know, known for quite some time too, and as with all manner of younger brother, really like pushing those buttons. Then of course, he gets upset when collegeman pushes back.

The true irony in all this is that what they are annoyed about in each other is the issues that each of them have. So collegeman can see when HSB is lazy, but not when he is. HSB can get annoyed with collegeman’s one-liners from the Big Bang Theory, but repeats the one-liners he likes. They have so little patience for what they perceive to be each other’s problems and faults that its truly comical at times. You have to laugh how they seem to have each other figured out, but they don’t fix those same problems in themselves first.

What to do? They do share a bedroom, interestingly that goes really well. But the areas that are important to them are their offices and for that each is off limits to the other. No problem by me actually. They do share the basement, take turns working out and playing their games. That they actually do really well. It’s truly the interacting part that causes them trouble. Truthfully I am not sure how much of the fact that they annoy each other is the aspergers and how much is just plain old sibling nonsense.

I can’t make them like each other (deep down inside I think they really do).  I can’t make them be friends. But I can insist on civil discourse and respectful interaction in the house and that’s what we are working towards. Not there yet, but we are working on it.

Told you Ali and Foreman have nothing on my boys.

Until next time,

 

Elise

P.S. If you read the previous blog you will note the discussion about collegeman’s beard and how we finally relented to letting him keep it as long as it was groomed. Pain in the ass had the barber shave it off yesterday. Go figure.