Autism thread

I had another bad realization recently. I don't think our house will ever be clean again. There are toys scattered everywhere, which is to be expected, but for most families only lasts a few years. That doesn't bother me.

The problem is the floor in the kitchen and living room is riddled with crumbs and things like dessicated pieces of meat and fruit that little guy throws and carries around then drops. There are sticky spots where juice got on the floor throughout the house as well and I am seriously doubting my son will ever gain the ability to know not to get food and drink everywhere, much less clean up after himself. As winter ends, this is going to mean more ants and roaches too and my wife hates bugs with an intensity bordering on phobia.

We've basically given up on cleaning since it's so much work just to have it a mess again in less than a day. Ah well, no point to this post other than griping and feeling sorry for our family.

I hear you, Gewy... I was vacuuming yesterday morning (never mind washing the floors), when the little guy came in, grabbed some bread, and started trailing crumbs behind him where I'd vacuumed only seconds earlier.
Any chance you might hire a service, give the house one big do over? It won't solve anything, but it might help a bit, if only for a bit of respite?

gewy wrote:

We've basically given up on

I've seen you post a variation on this a few times. I apologize if this is over the line, but have you considered seeing a counselor to help you process some of this? They wouldn't be able to do anything for your son, obviously, but they might help you come to terms with losing him and adjusting to your life ahead.

Owen is making some pretty good progress with potty training at IBI, certainly much better than we ever did. In underwear all day,and diapers at night. He'll urinate no problem, but bowels are a different story. Poor little guy just won't do it, he gets really upset when we try to get him to. He's on a gentle laxative daily, I guess constipation is a known issue for ASD kids.

Super proud of him.

OMG, you don't want me posting pics of the "deposits" my son leaves in the toilet. I don't understand how he does it...

*sigh* At least it's in the toilet.
But yay for progress. Progress, even if it's only during daytime is great news.

As I recall, he was 5, maybe 6 before he went diaper-free and even then he still has accidents at 11; the frequency is rare, but not "never" especially if he's engrossed in something (usually games).

Eleima wrote:

Any chance you might hire a service, give the house one big do over? It won't solve anything, but it might help a bit, if only for a bit of respite?

Nah, it would just be a waste of money. Things would be trashed within a couple of days. Most of what my son does all day now is roam around whatever room he's in, looking for furniture to climb or things to pull off the tables and counters and stick in his mouth. It's a losing battle and we've about just decided our best bet is to accept our state of relative squalor. I just hope the bugs don't get bad.

ClockworkHouse wrote:
gewy wrote:

We've basically given up on

I've seen you post a variation on this a few times. I apologize if this is over the line, but have you considered seeing a counselor to help you process some of this? They wouldn't be able to do anything for your son, obviously, but they might help you come to terms with losing him and adjusting to your life ahead.

Yeah, I should probably see a therapist. I feel like I'm just going through one protracted process of grieving. It's not really like I'm grieving the loss of my son, like you say. It's more like I'm losing basic things that I wanted for my family and myself that I always took for granted. Like living in a home that's relatively clean and not roach-infested. It's just one thing after another. And it's not offset by any hopeful developments to counter it.

That's what I mean when I say you lost your son. You lost that whole life you imagined yourself having, and everything is different. It's absolutely a grieving process.

Wink_and_the_Gun wrote:

As I recall, he was 5, maybe 6 before he went diaper-free and even then he still has accidents at 11; the frequency is rare, but not "never" especially if he's engrossed in something (usually games).

I have a feeling this is how my son will be too.

Something I thought was great: yesterday I was about to go out for a run, and my son asked to go with me. We walked together for about 2 miles. I am proud of him.

concentric wrote:
Wink_and_the_Gun wrote:

As I recall, he was 5, maybe 6 before he went diaper-free and even then he still has accidents at 11; the frequency is rare, but not "never" especially if he's engrossed in something (usually games).

I have a feeling this is how my son will be too.

Something I thought was great: yesterday I was about to go out for a run, and my son asked to go with me. We walked together for about 2 miles. I am proud of him.

I thought the same, but it's amazing what reinforcement will do. We've tried for a year to toilet train Owen, and in the span of 3 weeks they have basically trained him to the point that he actually goes to the bathroom himself about 75% of the time. I'm still amazed.

gewy wrote:
ClockworkHouse wrote:
gewy wrote:

We've basically given up on

I've seen you post a variation on this a few times. I apologize if this is over the line, but have you considered seeing a counselor to help you process some of this? They wouldn't be able to do anything for your son, obviously, but they might help you come to terms with losing him and adjusting to your life ahead.

Yeah, I should probably see a therapist. I feel like I'm just going through one protracted process of grieving. It's not really like I'm grieving the loss of my son, like you say. It's more like I'm losing basic things that I wanted for my family and myself that I always took for granted. Like living in a home that's relatively clean and not roach-infested. It's just one thing after another. And it's not offset by any hopeful developments to counter it.

I guess I should probably add this. I should see a therapist. Just like I should exercise and get more sleep and spend more quality time with my wife and by myself and finish up these various chores around the house and pick up some more work for financial security and see a couples therapist and all the other things I don't have near enough time for anymore.

Not that I had enough time even beforehand...

I'm glad Owen is making progress. Don't ever give up on him. There's a great kid in there. Convincing him to come out is the trick.

Finding a therapist that clicks with your kid is vital.

We were worried when the occupational therapist we had told us she was leaving for another practice after she got married. Little did we know it would turn out like that season of Monk where Sharona left and they brought in Natalie. The old OT was exactly what our daughter needed when she was seeing her, but she's advance to the point where the new OT Is exactly what my daughter needs now.

Neither of them think that ABA would work for our daughter, and given the results we're seeing I'm inclined to agree with them. She never responded to task/reward scenarios (we once tried to get her to try a new food by offering her something she had said she wanted, and her response was to decide that she didn't want it anymore.) The only thing that's been working is to engage her in the things she's interested in. We started doing that because she wasn't talking, and now it's hard to get her to be quiet.

Fortunately, the thing she's passionate about is video games-- talk about sheer luck. She's been playing Little Big Planet since she was four. We started talking to her about that, and encouraging her to try other games (she beat Poseidon in Apotheon by herself while I was at work and my wife was in another room.) Communication is up, and things that used to terrify her (Muppets, for example, would send her running out of the room to hide under the table in her room to cry for hours) are now current objects of interest.

Singing is still the biggest hurdle. My daughter hasn't been able to tolerate other people singing since we tried to song "Happy Birthday" on her second birthday and she cried for an hour. (Interestingly, music CDs are no problem. It's only real people, in person singing that she has a problem with. My wife suspects it's because she has perfect pitch, and she can hear when the notes are wrong. That would certainly explain why people singing Happy Birthday would freak her out.) It annoys my sister-in-law when we get invited to my nephew's birthdays, but I make no goddamn apologies for my daughter having auditory sensitives when we've struggled for so long to get her to deal with the sensory overload of parties in the first place. She (my sister-in-law) can just suck it up and accept that I'll be taking my daughter out of the room for ten minutes when they bring out the cake.

Even there we're seeing progress, though. My son likes to sing and my daughter has begun to tolerate him singing. It's probably partly because he's naturally very good, which mitigates the pitch-problem.

I look at the stuff I just wrote and hesitate to post, seeing how hard everyone else has it, but I ultimately decided that it's good to read positive stories. They promote hope, and hope is important when life gets hard.

That reminds me of when he was younger, he'd lose his sh*t if we ever put "The Incredibles" on. I don't know if it was something he could hear, or the plastic-y-ness of the characters...? He'd scream and cry, yet stare at the TV, like he couldn't look away.

At birthday parties he'd cry every time the candle got blown out, every time, but eventually, he just stopped.

Weird, man.

My son runs out of the room screaming if "Teletubbies" is on, and puts his hands over his ears to block out many sounds he doesn't tolerate, such as the mixer, the shower, and me singing (recorded music is OK).

Do any of you use chore/task charts that earn privileges (such as iPad use) with your children? I'm thinking about setting one up for my son.

concentric wrote:

My son runs out of the room screaming if "Teletubbies" is on, and puts his hands over his ears to block out many sounds he doesn't tolerate, such as the mixer, the shower, and me singing (recorded music is OK).

Do any of you use chore/task charts that earn privileges (such as iPad use) with your children? I'm thinking about setting one up for my son.

Owen was really into Paw Patrol recently, and they had a printable thing that you could put a sticker on each time something was done. We tried this with toileting, but I guess the lure of a sticker wasn't that strong for Owen so we didn't continue. He seems to want instant reinforcement, and usually in the way of junk food!

concentric wrote:

My son runs out of the room screaming if "Teletubbies" is on, and puts his hands over his ears to block out many sounds he doesn't tolerate, such as the mixer, the shower, and me singing (recorded music is OK).

Do any of you use chore/task charts that earn privileges (such as iPad use) with your children? I'm thinking about setting one up for my son.

My kids both responded well to a "do something new X times and you get to pick a big reward." The trick was that it couldn't be constant. We have very defined things to do that were clearly defined as outside of normal, everyday stuff, and we did not substitute whatever new thing we introduced for something they already liked. So with food it was "eat three bites of this food you've never tried" to get a punch on the ticket, and then you get your normal dinner.

We've tried instant-gratification bribes (do this thing, get a treat), and we've tried punitive (do this thing or we're taking away something you like) but neither of those worked. The latter just undermined the trust we worked so hard to build, and the former just resulted in them hating to do the thing they were getting rewarded for even more. I guess they viewed the instant-reward scheme as an admission that whatever we were rewarding them for was so crappy they'd only do it if we gave them a treat afterward.

Gewy,

Could you create a 'tablecloth' for the floor? A tarpaulin or other material that's taped down and which you can change / dispose of every week or so? Even if it's just in the kitchen, maybe you could pick it up and get rid of the crumbs more quickly than trying to hoover everything.

Presumably your son wouldn't get along with a robotic vacuum cleaner, because that could be an option.

EDIT:

They'd be prohibtively expensive for regular use, but sticky floor mats - as used in hospitals and building sites - might be something you could try for cluster points of dirt. Maybe there's a cheaper option out there.

http://www.homedepot.com/p/Americove...

[quote=concentric]

Wink_and_the_Gun wrote:

As I recall, he was 5, maybe 6 before he went diaper-free and even then he still has accidents at 11; the frequency is rare, but not "never" especially if he's engrossed in something (usually games).

My last childhood accident was around age ten for this very reason. My father would drop me off at the electronics section at Macy's, and I'd wait my turn to play Super Mario Bros. It was the only time I'd ever get to touch a Nintendo, so I wouldn't pay attention to anything else.

Yeah, I've thought about some kind of disposable floor covering, but my son likes to throw and carry around food, so it probably wouldn't be effective enough to be worth it.

In my ideal custom built "autism house" that I dream about but will never have the money or time to create... In it, I'd have an enclosed dining room with a tile floor and a drain in the floor, preferably with a garbage disposal. I could just mop everything down into the drain after every meal.

You may think I'm kidding but I'm completely serious.

One of the reasons I keep venting on here is when I tell coworkers or family about my plan, they just nod knowingly and say, "yeah, kids are pretty messy. Mine was at four years old." I feel like grabbing them and saying, "my son is functioning on the level of a ten month old and has been for the last three years! There's no sign this will ever change! What was a phase for you will be a lifetime for me." No one seems to get it.

The fact that I'm starting to more and more envision similar interactions with most parents of kids with autism I know has become even more discouraging.

I feel like grabbing them and saying, "my son is functioning on the level of a ten month old and has been for the last three years! There's no sign this will ever change! What was a phase for you will be a lifetime for me." No one seems to get it.

If it makes you feel any better (and it might), know that that's precisely my situation except that my son is almost six. I get jealous as hell of some of the problems I see parents of other autistic children complaining about because I wish my son were high functioning enough for those things to be an issue. Parents of neurotypical kids I sometimes don't even know how to talk to.

At least neither of us is alone.

I didn't know where else to post this, but I figured here would be best.

My second son turns one today and all I can think of is how a year ago I got chopped up and cut open. Doesn't help that in my heart of hearts I'm convinced that he's on the spectrum like his brother. Doesn't help that I barely got any sleep last night because he threw up around midnight just as I'd passed out after finally putting his elder brother to bed. Doesn't help that we had an encore this morning, complete with a diaper blowout. Doesn't help that I'm alone with the boys this weekend. And last night a college friend of mine was complaining on Facebook that her potty trained, NT son who is a month older than my eldest had an accident that night. I'm having a hard time with some parents of NT who just go on about their kids and complain all the time.
And to top it all off, I saw my son's ABA therapist last night and I have instructions not to kiss or hug my son unless he's looking at me. I just about lost it when she told me that. I see my kids two days a week, and she says it's for his own good and to lessen his behavioral issues and reinforce social eye contact, but... Screw eye contact, it's overrated. Sometimes you just need a good squeeze and eye contact is too stressful. I see them two days a week. Simply typing it is enough to set me off. I miss them every second of every hour I'm away. Anyhow. Yeah. Sorry about the wall of text.
I guess today is just going to be one of those days.

Eleima,

I'm sorry to hear your youngest is sick. We never feel the lack of communication more than when our kids are hurting and they can't tell us why and they can't let us comfort them. I'll admit to having become a mild germaphobe just because I can't stand to see my kids get sick.

It's always good to remember that you are your child's mother, and any specialist you hire is just a consultant. If what they tell you isn't going to work for you, don't feel guilty about doing your own thing. I believe the most important thing with a spectrum child is finding a way to connect with them in a way that makes sense to them , not necessarily to me.

We have a therapist that constantly used to constantly prod our daughter with questions. It didn't work, and it never did. When we started just talking to her (about things she was interested in especially) without demanding responses, she started talking a lot more because she didn't feel pressured anymore.

Such thoughts as I can spare are with you. Don't let the NTs get you down.

Eleima, what a rough weekend you are having on top of everything else! doubtingthomas has great advice. Personally, I do not think I could carry out your therapist's advice. I'm happy to work on eye contact in other areas, such as asking for something, but I also think that, for us, giving positive feedback when he makes eye contact with me spontaneously is worth doing. I also ask if he wants a hug or kiss and let him tell me. I know he likes them when he's in the mood. I wonder if there are cues your son might give if he's in the mood for affection, and if they could be reinforced.

I saw the WP interview with Ari Ne'eman that you linked in the autistic adults thread and liked it. I also saw this and thought this section was apt:

The seed is not the plant. The child is not the adult. And children are such mysteries when compared to seeds. The experienced gardener knows how much harvest she will reap from a row of radish seeds, provided no accidents such as drought occur. A parent can give birth to a dozen children and still only have rough ideas of how that twelfth child will turn out, given no accidents that sway the course of the child's growth or cut it tragically short. Parents see things, many things, but not everything.

My sister (who happens to not be Autistic) was very gifted with mathematics in her teens. There came a point, in middle school, when my father could no longer help her solve problems, despite his degrees in chemical engineering. My sister was calculating problems involving things such as trains traveling through spiral tunnels. It seemed obvious to all of us in the family that she was destined to be a scientist or mathematician when she grew up. Her aptitude in the STEM fields was tremendous.

Imagine my parents' shock when my sister declared art history as her major in university. She went on to work for a non-profit protecting historical architecture before marrying and becoming a stay-at-home mom to two delightful little girls. She was an acorn that grew into a daffodil! I say that not to devalue what she has done. Hers is a well-lived and splendid life and daffodils have intrinsic value. But they are a shock when one expects an oak.

Children are unpredictable. Their life trajectories are hugely unpredictable. And, in many ways, Autistic children are even more so. Although I believe that autism is nothing new and Autistic people have always been among us (though unrecognized and called by other names) a clear understanding of what autism is and what the autistic lifespan looks like is still to come. These are uncharted paths that are in the process of being discovered by researchers, by parents, by Autistic people ourselves.

And therapists, many of whom, in my own short experience, not only have only therapeutic contact with autistic children, but no children themselves. So while their advice can be very helpful, I'm also a little skeptical until I see it working for my son. For example, the therapists on the Early Autism team who worked with my son and now with my daughter I trust because I see the progress and know that their methods are patient and kind.

Thanks a lot, DoubtingT and Concentric. After a day of cleaning poop and vomit, managing meltdowns and doing laundry, I really, really needed that. That excerpt you picked Concentric was perfect, I should've remembered it.
Matt does indeed indicate when he wants affection and often, he'll ask to be held (by coming up against me and looking up Nd holding his arms out), or he'll reach out with his free hand (he sucks his thumb, I don't know how we'll ever make him stop) and tries to reach down the front of my shirt. Which sounds weirder than it is, he's usually trying to hold on to my shirt and is "petting" me. When he wants to be kissed, he'll typically grab my heads with both hands and pull my face to his. He's super affectionate and is very clear on when he wants to be held, hugged and kissed. He just doesn't always look me in the eyes when he does.
When he wants something like food, cartoons or whatever, he does look at us because we've been "training" him with ABA to look at us (or else he doesn't get it). I don't know how I feel about that.
And you're right, Concentric. She doesn't have any children of her own. Neither do the two other therapists I've met.

Bleh. These analogies drive me crazy. For some, raising a special needs child may be a trip to Holland, but for others, it's being permanently detained in the airport because your passport is bad. Sleeping on the hard floor with luggage for a pillow and brushing your teeth in the public restroom.

Some people with autism are seeds that grow into unexpected plants. Others will stay seeds all their life, buried in the ground no matter how much time and effort you spend cultivating them.

Needless to say, the future I imagine for my son right now does not involve art history major or blogging online, but group homes and forever being at the mercy of others who may or may not really care about him.

Eleima wrote:

Matt does indeed indicate when he wants affection and often, he'll ask to be held (by coming up against me and looking up Nd holding his arms out), or he'll reach out with his free hand (he sucks his thumb, I don't know how we'll ever make him stop) and tries to reach down the front of my shirt. Which sounds weirder than it is, he's usually trying to hold on to my shirt and is "petting" me. When he wants to be kissed, he'll typically grab my heads with both hands and pull my face to his. He's super affectionate and is very clear on when he wants to be held, hugged and kissed. He just doesn't always look me in the eyes when he does.
When he wants something like food, cartoons or whatever, he does look at us because we've been "training" him with ABA to look at us (or else he doesn't get it). I don't know how I feel about that.
And you're right, Concentric. She doesn't have any children of her own. Neither do the two other therapists I've met.

This sounds like my daughter a few years ago. One of the reasons we didn't get a diagnosis until she was seven was her communication seemed relatively normal considering our famiy histories (I can think of several close relatives in my family that I strongly suspect would have been on the spectrum if the diagnostic criteria they used today was the same they used back then. Heck, some of the things my daughter struggles with are the same things I still struggle with in day to day life)

She's a bit of a chatterbox now, though we're still working on social appropriateness. Kind of like her father.

Don't give up hope. There is a great kid under the social and sensory processing issues.

There's a lot of bullcrap that's done in the name of ABA. If something doesn't seem right, E, then don't do it. It makes no sense to withhold physical affection from your child! (Didn't they used to think that was what caused autism in the first place?)

Eleima, I don't think I would withhold affection from him either. Maybe give him even more affection if he looks at you, but I couldn't withhold it if he were communicating he wanted it. Doesn't seem right.

For what it's worth, anecdotally, I don't think our ABA therapists have ever emphasized eye contact at all. We did have a speech therapist who focused on promoting eye contact by giving toys when he looked at her. This was while he was on the wait list for his autism therapy program. In hindsight, I'm not really sure she knew what to do with a non-verbal autistic kid, but we figured it was better than nothing at the time. That was back when we were still thinking he might start talking and making progress any day.

I don't believe my son finds eye contact distressing at all, by the way. I just don't think he's drawn to faces like most kids are.

Our Speech therapist spent a lot of time figuring out that things that worked for other kids didn't work for our daughter.

The reason we stayed was that she kept trying new things. If a therapist dealing with special needs kids can't be flexible, I really don't know what they're doing in the field at all. Not every kid is going to respond to what somebody wrote in a book.

The best therapists suggest rather that prescribe.