Autism thread

Ugh... is it just me or do people seem to suck more than ever? Maybe it's just that they're the ones that flap their gums, and show their ignorance/bigotry/hatred off to the rest of the world - and therefore, get noticed.

Grrrr... I would have told her off, just like you did.

Thanks, gang. We try to avoid traveling when possible but it is t always an option. And most people assume that I'm being negligent because I'm not showing any response to the meltdown. Ugh. So to complain so much but it's been a tough week.

There really is no light at the end of this tunnel, is there?

Eleima wrote:

There really is no light at the end of this tunnel, is there?

As someone who has been down a similar tunnel under other circumstances, there is light in a way. However, what your light will shine upon will be unique to you. Do your best to look for and appreciate the good things about the time you're in, because it will surely pass. Perhaps I can help with one thing: As a parent I'm grateful for the stories you're sharing. They make me feel not so alone when things are especially difficult. They're gifts that make a difference.

Yeah, having a rough time here too. Little guy had two cavities. Probably because we can't effectively brush his teeth when he fights us. We opted to get them filled at the hospital under general anesthesia rather than physically restrain him in the dentists office.

I think the whole experience was very traumatic for him. He acted so distraught for days and wouldn't let us touch him or pick him up. Poor guy had no clue what was going on, his teeth probably hurt, the anesthesia made him feel out of it, unfamiliar environment, etc. I think he had some kind of PTSD from the ordeal. I feel so sorry for him, and probably we'll just have to do it again later. You could see his entire body just tense up whenever we went to touch him. Like he was bracing himself for us to hurt him.

Luckily after a few days he went back to normal and was in a good mood.

Now he's back to being fussy and randomly letting out thisgod awful yell and hitting his head- hard. It's painful to watch and I have no idea why he's so upset... Or even if he's upset.

Thanks for the kind words, LouZ. I typically am the kind of person who tries to look at the positive stuff, mostly because if I focus too much on the bad I'll go insane, but it's just so hard to be upbeat right now. The last two weeks have been particularly grueling with a very difficult move in a very not baby/autistic proof apartment, and we're scrambling after the boys to keep them from tossing stuff out windows, open cupboards, and touching stoves. Meltdowns have been a dime a dozen. What Gewy wrote resonates with me, because my eldest has been exactly like that, tensing up and refusing hugs and kisses. That's particularly uncharacteristic for him.
And I myself am not handling the transition so well. I'm very selfishly missing the days when I'd commute back and forth and only see my family on weekends, because that meant entire evenings of me time. I haven't gamed in ten days, the ISP is dropping the ball to boot, and the Sunday spent at IKEA sent me in a spiral of meltdowns.
One step at a time, one day at a time.

I'm so sorry it was so difficult for you guys, Gewy. I know that we'll probably have to do the same thing, and to be honest, I'm with you, I'd much rather sedate him then physically restrain him. It's so hard having them be complete ciphers, and not being able to puzzle out what's bothering them. Sending you positive vibes, hope things improve.

Eleima wrote:

There really is no light at the end of this tunnel, is there?

For what it's worth, my daughter seems to be really working her mirror neurons lately. She's asking "the W" questions, like why and when, instead of just requesting things.

On our way to OT, she described to me the pet frog that she wanted (he's blue and named Dorothy). On the way home she told me she changed her mind and wanted a turtle instead (green, but still named Dorothy).

Yesterday she and my wife spent an hour collaborating on a drawing. That's huge for her.

I can't say what the future will bring; every autistic kid is different, and autism seems to manifest differently in girls than in boys; but don't give up. The best thing you can do is just love your kid as he or she is right now.

I know it's easy for me to say, but there's always hope where there's love.

Thank you, Thomas. I'm glad your little girl is making so much progress, that's really awesome. She seems light years ahead of where my boys are, though. I would so love for them to be verbal, if only to make their needs and feelings understood, it would things a lot easier on us all.
If anything, the eldest has graduated from swearing his feces on the wall to simply bringing it to us, so... Yay progress?
And there is love. My youngest had just drifted asleep after breakfast in my arms, and the eldest snuck into our bed in the middle of the night, and I love those moments. But I hate and resent the screaming and meltdowns and willfulness. We can't even take a stroll down a street without fighting them for them to take our hand.
It just isn't supposed to be this hard.

Eleima, how old are your boys again? I think they're both younger than my 5 year old. I've never seen them, obviously, so I don't know how severe their behaviors are, but they've gone through a move recently, in addition to their being ages where developmentally many children are really challenging. That's not a way to minimize, but maybe to see that there might be other stresses contributing to their behavior. Anyway, I am always hoping for your children and gewy's son to find ways to ease things for you and them. It really isn't supposed to be this hard, I agree.

It turns out that our daughter doesn't qualify at this point for special ed. On the whole that is a good thing, but it was a really tough call. It's looking a little more that she's not on the spectrum, more significantly delayed in speech. Her brother is her primary model so that's made it difficult to tell for sure. We're supposed to keep track of her speech and check in towards the end of the year to see about a possible reevaluation.

Thomas, how old is your daughter? And I agree with you about hope and love.

My eldest is almost four now and the youngest is one and a half (so his delays aren't immediately apparent, but increasingly so with every day that passes, especially when compared with the other kids in the day care). But my concern is primarily aimed at my eldest who just isn't making any significant progress at this point on any front, not on being toilet trained, not on brushing his teeth, not on his behavior, not on speech, not on simple small things like holding our hand when going down the street...

Good news that your daughter is making progress and not qualifying anymore. Does she go to daycare and see other children? She might benefit from being with neurotypical kids, maybe?

Eleima, that is very, very frustrating. I know some of what you mean about your sons - I took my son to my daughter's dance class yesterday, and he had a really hard time controlling himself. He's learning more self-control when it comes to acting out and hitting, but still has a ways to go. Any progress we see, even how small, we are learning to appreciate. He's still having a lot of trouble staying dry. I am always sending good thoughts your way.

I hate to say it, but the progress my daughter's been making may be connected to her brother being in school all day. Her daycare is full of typically developing children, and that's helping. Another thing that's helped is putting her in group activities, like nature camp and dance class. I'd like to do that with Alex, but he doesn't have the self-control at this point, in addition to his level of discomfort with groups. We will keep looking for opportunities and suggestions. Martial arts may be a good possibility for him. Or a running/hiking group - he did a 2 mile hilly hike with me last week after a sudden decision to join me for an organized trail run. But it's really hard when the child doesn't seem to be able to follow directions or be aware of safety in public.

ETA: It looks like my son's school (he's in kindergarten) now has a run/walk mileage club, and I'm available to be there during the time his class has their turn, so I'm going to try to join him once a week.

Thomas, I'm interested to hear about your daughter's speech development. I think you mentioned that she wasn't so verbal earlier?

Eleima wrote:

My eldest is almost four now and the youngest is one and a half (so his delays aren't immediately apparent, but increasingly so with every day that passes, especially when compared with the other kids in the day care). But my concern is primarily aimed at my eldest who just isn't making any significant progress at this point on any front, not on being toilet trained, not on brushing his teeth, not on his behavior, not on speech, not on simple small things like holding our hand when going down the street...

Four and five were my daughter's hardest years. She couldn't stand music, and if an episode of a TV show she didn't like came she had a meltdown. She'd scream her head off and hide under her bed until we turned the TV off.

Today, at eight, she still doesn't like to hear people singing in real life, but she likes listening to music in the car, she's seeking out new videos on YouTube (supervised, natch) and if an episode of a show comes on that she doesn't like she goes to her room and shuts the door.

I doubt she'll ever be neurotypical, but given her parents I don't think that would have been in the cards anyway. (My wife has a lot of hyper-sensitivities, and I have executive processing function weaknesses)

We didn't start her in formal therapy until she was six. My wife must have read every book and tried every thing that didn't involve medication or crackpot tinctures. The main thing we figured out was her meltdowns always, and I do mean always, have an explanation, even if it was one that didn't make sense to us. Her SPDs make certain things very hard for her, and when we began to recognize what her triggers were and try to accommodate her, or at least prepare her for situations that might overwhelm her (she couldn't talk much, but she could listen, even when it didn't look like she was) the meltdowns pretty much stopped.

The tipping point for us was Pokemon. My daughter loves Pokemon toys and Pokemon games. We thought she might like the Pokemon show, but she wouldn't even try it. She screamed when we put the DVD in. She wouldn't even try it.

This was when we were in a mode where we thought she could just get over it if she saw that nothing bad would happen, so we tried to force her to watch it. The ensuing meltdown had all of us in tears, and we decided then and there to never try that again.

It took my daughter months to trust us again, (a year later she was still reminding us that she didn't want to watch Pokemon) but we did everything in our power to make sure she felt safe. Now she just asks us to skip the parts of movies and tv shows she doesn't like (thank goodness for DVDs) and she trusts that we won't force her to do anything she really doesn't want to do.

Or, as in the case of doctor visits, she trusts us when we tell her it's important and that it will be over soon. She's been a lot braver about that these past couple of years.

That trust, I think, is the biggest part of the successes we've had. She needs to feel safe if she's going to come out of herself and connect with people, and if that means we have to make a few accommodations that a neurotypical kid wouldn't need, so be it.

concentric wrote:

Thomas, I'm interested to hear about your daughter's speech development. I think you mentioned that she wasn't so verbal earlier?

She was basically non-verbal until four or so. The only thing I remember her saying before her fourth birthday was when she was two and we were walking through a few inches of snow to get to our car. She said "I wanna go in the car." It was the saddest little voice I'd ever heard. She really hated the snow.

Other than that, very little. Sometimes she'd say "more" if she was hungry or thirsty, but that was about it.

My wife found out about a way of talking to nonverbal kids to encourage language development. In a nutshell, the reason she wasn't developing language was because we were overwhelming her by constantly prodding her with questions. On the rare occasions she spoke, we'd ask her for clarification (what did you say?) or elaboration (tell me more about X). Every time she came out of her shell we bombarded her with questions.

To someone with poorly developed mirror neurons, it must have been very stressful for her. Heck, I know how stressed I get when people start asking me questions and I'm a grown-ass man. The non-verbal behavior was basically just her turning away from pain.

So instead of asking questions, we started modeling speech. If she was enjoying a cookie, for example, we'd join her and (calmly) tell her that we liked cookies too. Maybe we'd pick part of the cookie that was particularly good and tell her we liked that part.

Video games gave us a lot of good opportunities for this kind of thing. If she was watching me play, I'd tell her what I thought about what was going on. If she was playing, we'd talk about things we thought were cool or interesting that she was doing.

There's a term for this, but I don't remember what it is. The key thing is to not overdo it. Nobody likes a chatterbox, and her least of all.

Today she's speaking in more complete sentences, telling us what she likes or doesn't like, and lately has been asking WH questions. Recently she's started playing a game with my wife where she describes something silly and my wife draws it based on her descriptions. That's huge!

We've still got a long way to go, but we've seen progress and we've got momentum. It just took a long time to build.

Last couple of days my son has not cooperated with bath time. In fact, he looked scared and confused by it despite the fact that he has LOVED taking his bath for the last year or two. A long time ago he even verbally requested it by saying "ba". Of course that didn't last for more than a week like all of his previous verbal abilities.

Looking at his facial expression, it actually crossed my mind that maybe he has somehow forgotten what the bathtub is and had no idea what to expect even though he's been in it almost every day of his life. Maybe that's how everything is for him? Surely not, but who the hell knows? A depressing thought. What if he is constantly forgetting things like that guy from the movie Memento or something? That would explain why he doesn't seem to be making any forward progress, and has often learned skills only to lose them after a week or two.

I'm not sure if any of you saw this but thought you might be interested:

http://cheezburger.com/8577442048/fe...

"Sesame Workshop is taking a step toward wiping away the stigma associated with autism.

A new character, Julia, has been introduced as a part of Sesame Street and Autism: See Amazing in All Children. Julia will live digitally on an app that helps parents and children with autism communicate through story cards.

The movement to bring Julia to life has taken three years, and includes other pieces to the campaign like "The Amazing Song.""

And more resource information here:
http://autism.sesamestreet.org/

Thanks, Rahmen! I am thrilled about this initiative. I really like the videos I've watched so far from this series.

And of course the anti-vaxxers are losing their collective sh*t. Because a positive portrayal of an autistic person is a deep, personal insult. Or something.

These people are so sickening...

I'm a little disappointed that the character only lives in an app, and not on the show also, but it is a positive step nonetheless. Like Temple Grandin says: different, not less-than.

Kudos to Sesame Street.. always relevant.

I heard an interview with "Maria" recently, and she was talking about some of the stuff that didn't make it, like divorce. They had a story line which talked about snuffaluffagus' parents got divorced, but the test audience began to think that arguments meant divorce, so they scrapped it.

Screw those anti-vaxxers, seriously.

Rahmen wrote:

I'm not sure if any of you saw this but thought you might be interested:

http://cheezburger.com/8577442048/fe...

"Sesame Workshop is taking a step toward wiping away the stigma associated with autism.

A new character, Julia, has been introduced as a part of Sesame Street and Autism: See Amazing in All Children. Julia will live digitally on an app that helps parents and children with autism communicate through story cards.

The movement to bring Julia to life has taken three years, and includes other pieces to the campaign like "The Amazing Song.""

And more resource information here:
http://autism.sesamestreet.org/

Interesting. The South African version, Takalani Sesame, had a similar idea when they launched with an HIV+ character back in 2002. Sesame Workshop is such a great organisation.

My son asked me, for the very first time today, "Hey mom, remember when...?" It made me so happy.

ps: I have faith that all of your children will get to this point on their own schedule.

That's really awesome, I'm very happy for you and Alex, but don't make promises you can't keep. At this stage, I have to be realistic. While there may be hope for #2 (and even then, I'm not holding my breath), #1 is turning four in two weeks. And we're basically exactly where we were a year ago.

What would help you most to hear? The last thing I want to do is make anyone feel lesser than or resentful. I know you are a wonderful mother who is doing the best for your children. And of course they develop as they will.

Oh I feel neither resentful nor lesser! "Different, not lesser than" Temple Grandin said. It's a spectrum and not all our kids are going to be on the verbal end of it, never mind the rest. That's just a fact, feelings don't come into the equation and at some point we have to realize and accept that. My husband says that we have to give our boys every chance possible, so that they can be like me. But although he's right on the first part, he's very mistaken on the second part. I was verbal before two, I was potty trained before three, I didn't get diagnosed until I was thirty and spent most of my life with people thinking I was cantankerous, temperamental.
It's not about what I want or need to hear, that's irrelevant. It's about reality, and my reality is a very different one. I'm really glad that Alex is making great progress, but that is nowhere near where my boys are at, not by a long shot.
Just as we don't promise patients they're going to get better when the odds are split, no promise can be made here either.

concentric wrote:

ps: I have faith that all of your children will get to this point on their own schedule.

Yeah, I don't think this a realistic expectation for my son either. Any limited verbal abilities he once had seen a distant memory, and he hasn't really picked up on any alternative communication strategies either, despite everyone's efforts for the past 3 years almost. I really fear for his future. Can't imagine what it's like to be totally dependent on other people to figure out what you need or want all the time.

Thanks, this helps me to hear. I'm just trying to figure out the best way to express my support for you. It's really hard for me to figure out what's realistic, for my own children, and certainly harder for yours.

My son had his first playdate Saturday, with another boy in his class who looks to be at about the same place on the spectrum as he is. They watched each other play Super Mario Maker and played with some other toys too. The other boy left his toy car here, and Alex remembered on his own to bring it back to him to class today.

Eleima, how are your kids doing with everything in Paris right now? Are they aware of what's happened?

Concentric, that's so awesome that they had such a nice play date, I'm very happy for him!!

As for mine, they're utterly, blissful, completely unaware. My eldest wasn't even aware that it was his fourth birthday yesterday, so forget anything as complicated as the attacks. He hasn't been making any progress since we've moved. We've made no headway in getting services for him. So much so that it's causing some major friction between my husband and me (same old, he says I'm not doing enough and that I don't take good care of the kids), so he wants to move back to my parents with my eldest.
So yeah, just peachy.