Autism thread

I've really been laying low this summer - just too busy with life. Here's what's been up with my children: Catherine's therapists are really on the fence about whether her difficulties are due to developmental delay or autism. She's done really well in a nature camp and dance class this summer, even picking up on cues based on other children's behavior.

Alex is now almost 100% potty trained. It took finding the right positive incentive to add to the negative ones. So in addition to not being able to use the iPad and not have milk if he had an accident, I took him out to buy several toys of his choosing, all under a certain price. Every day he is dry, he keeps privileges and gets to pick a toy. That's been expanded to a choice of toy or a Costco berry smoothie, or even what he calls an "adventure" (i.e. shopping trip) with his father.

On the other hand, he's had a much more difficult time with impulse control. He's hit, kicked, and even spat on me, and has done this to other children at daycare, even one of his therapists. We're trying to figure out the best response. I'm reviving some of the PCIT methods, and thinking about talking to a behavioral therapist. He does have behavior as a rubric on his IEP.

I hope things are well for everyone in spite of the very real stresses and difficulties. My husband and I are really worn out this summer.

Not really, but thanks for asking.
I'm glad Catherine is doing well, and hope things keep moving along so well. Congrats to Alex for potty training, and I hope you manage to solve the biting and kicking at daycare. Something must be bothering him to set him off like that, and hopefully you'll find out what soon enough.

I do hope things improve for you all around. Having two children on the spectrum - well, we might be in the same situation, and the time and energy in addition to the financial stress is too real. We are trying to understand the reasons for Alex's behavior but haven't got there yet. We're trying to catch the moment where he's about to react to redirect him.

I saw this recently and liked it:, especially since Alex is stubborn. I find Judy Endow someone with much valuable insight.

So we've had another "smear feces all over the walls, the floor, the play mats, the door, the bedposts...
My mother and I cleaned while my husband took him to the bathtub. He still reeks. We might need to scrub.
Seriously. f*ck this sh*t.

In another news, the MOCOS enzyme is revealed to be a player in ASD (Nature article, originally published in Molecular Psychiatry).

Yeah, we're up to feces smearing episode number 3 here. Luckily only one was bad. Lots of close calls though.

It sucks. I'm so tired.

Aaaaaaand episode three during naptime. I'd already changed two poopy diapers this morning so I didn't think...

I'm tired too. At this point, I just want to lock him in a room with an open window.

So sorry Eleima. At this rate, we can have a contest. First one to ten wins.

I was on call last night and had to go into work, so wife let me sleep in. Come upstairs this morning. Wife and son are out somewhere, but there's dried up feces stains on the carpet and linens and clothes scattered all over the place. No doubt she was wrestling with him trying to clean him up and it got everywhere. I wish she had just waken me up... Not that there's enough time to when it happens.

So now basically we're at a point where we have to be constantly vigilant, ready to act the moment he starts having a BM. So tiring and stressful yet so boring as well, as he just runs around stimming and putting things in his mouth.

I guess we have to get some kind of special needs clothes that he can't take off or overalls or something. And pray that potty training works eventually.

I hear you, but *how*?!? How do we monitor BM at this point? Like I said, mine had had two poopy diapers this morning and even though I could hear he was awake in his room and resisting his nap, I didn't suspect that he had decided to paint the next Lascaux in his room. He was wearing a diaper, a onesie and pyjama pants.
At this point, maybe duct tape is an acceptable means to secure a diaper??
And egad, but the smell is a tenacious thing. I think we might need to paint the walls. We've been at it with bleach, vinegar, ammonia.

Try a product called "kids and pets". It has special enzemes to remove smell and works great for pee and puke. I imagine it would work good for feces too.

I'll take a look and see what's available in my side of the pond. Thanks, WizKid.

I have heard of people using duct tape to secure diapers. Whatever works. I hope this is a passing phase for both of your children, Eleima and gewy. My son did it, but only a few times. That was plenty.

I've been asked to join the planning committee for the local school district's Collaborative Autism Team. There will be 3 open presentations during the school year about autism-specific topics. The team is made up of a mix of parents and school district folks who oversee special ed. I'm excited. Any advice?

Congratulations, Concentric!! That's really great news. I've little experience in such matters, but my advice would be to come prepared. Try to find out beforehand what will be the different talking points, and some observations or suggestions planned. Obviously, you don't need to map out everything, but have a few major points ready. As for the presentations themselves, who will be giving them? Good topics would be basic stuff like what is autism, what do we know about it and debunking some of the common myths and misconceptions.

As for me, we've had two more poop incidents this weekend, although thankfully, the damage was minimal this time (poop smearing was limited to the hardwood floor or the wall).
My eldest's vocabulary seems to be improving a bit though and that's good. Of course, it's most unintelligible, but he seems to like to "talk". Hopefully, that will keep moving in the right direction. We've an appointment mid September with the government branch that handles handicaps, so they can assess "the impact of our child's handicap on our daily lives." Hopefully, we'll finally get that green light and access to financial aid and services. Not holding my breath, though. We met a renowned French expert on autism, through a friend of a friend, and he basically estimated that only one child in three in France gets the help they need. Appalling.

My youngest is doing okay and responding well to the efforts we've been putting. He still has a couple of idiosyncrasies were trying to steer him clear of and he'll typically bang his head on a wall or floor when frustrated. He also has language delays, with very little babbling at 17 months.

We just got a bunch of extra large special needs onesies that fit my son, who's about 45 pounds now. This little guy doesn't know how to use a doorknob but somehow, while I was using the restroom, he managed the magic trick of removing his diaper without unsnapping his onesie. Wet diaper just lying in the floor when I came into his room. Onesie still on him, albeit wet.

Still, they seem to have slowed down his ability to get to the poop, which gives us more time to respond. We still feel like we're on guard for it all the time though. And it's not going to make much difference if he goes in the middle of the night. Doesn't help much with diaper changes either; they're still a messy struggle.

I'm beginning to think dirty diapers might finally be bothering him somewhat. Not sure. Maybe this is a sign to start potty training now?

I'm fairly certain, Gewy, that it means that they *are* bothered by the wet diaper and the poopy diaper. They just don't know how to deal with it and don't know any better. We should start a semblance of potty training soon, but we're waiting until the youngest' daycare opens after the summer break. Too complicated when there's both kids to chase. Apparently there's a whole procedure in ABA for potty training, but it's super time consuming and you pretty much to do nothing but that. Works well, though, at least that's what we were told. Will definitely keep you posted and pass along tips if we manage it. Would be nice to have only one of two kids in diapers...
Hang in there, Gewy.

FWIW, my son resisted potty training until he realized he really did not like the feeling of a poopy diaper. He's regressed a bit when it comes to peeing, and we had wet pullups last evening and this morning. So he's losing privileges and isn't happy about that.

It looks like the topics are set for this coming year. The audience for these meetings are educators and interested parents. There was a college student who also attended - she's on the spectrum and is interested in self-advocacy. This year we will be talking about ASD and safety, self-advocacy, and one topic to be decided. I am guessing I will be helping with organizational tasks, which is great. Over the next year, I plan to be in contact with people who can help students on the spectrum transition to and succeed in higher ed. There's a good program at the community college where my husband works, and I'd like to get some information from the people who run it.

Ah yeah. Potty training protocol is basically going to be hanging out with our son in the bathroom every waking minute, loading him up with fluids and rushing him to the toilet whenever he starts to go. Sounds pretty torturous. So boring for everyone involved. Therapist did say she usually saw good results though. Typically takes a week on average.

Getting it done in one week would be wonderful. Good luck.

I asked my son a couple of weeks ago what would count as a "good adventure" (that's one of the privileges he loses if he wets his diaper). His answer: "One, two, three, four..."

This semester I'll be sitting in on an grad level autism seminar taught by the woman who diagnosed my son. PM if you'd like to see the readings. About 15 people from the community will be sitting in in addition to the enrolled students. We won't get any CEU's or academic credits, but I'm looking forward to the opportunity to learn.

That's really cool, Concentric!!! I'd be curious to take a peek at the readings, and will shoot you a PM when the seminars start. I'm very interested to see what if any impact the differences in culture will have in what is said (comparing to what I've heard/learned over here).

Little update, Owen started Junior Kindergarten this week and is having a blast.

I hate to gloat, but this kid has come insanely far since his diagnosis. He went from non-verbal in December of 2013, to attending JK with very little supports. He has turned into a social butterfly, and I think because of his ABA and IBI therapy he is even ahead of most of his peers when it comes to school readiness. Fully toilet trained, and even riding a bus on his own, to and from school. The pediatrician said he may actually lose his diagnosis, now I might actually believe her. We have worked so hard to get him where he is, and it's so wonderful to see it all pay off.

He can write his name, and read and spell mom, dad and Owen.

I feel so blessed, and just love the hell out of this kid every day.

That's great news about Owen!

Alex has been adjusting reasonably well to kindergarten. His school principal did a great job matching him with a kindergarten teacher. He's a smart kid: he is teaching himself to read and do math. Where he needs help is with social and other behaviors. So one of the measures of success is not getting removed from the classroom for his behavior. So far, so good.

Must be an amazing feeling.

I am starting to be scared to death about how my son will adjust to public school in a couple of years. I just don't think most have the resources to work with someone like my son. I've been reading too many horror stories of underfunded school districts trying to get by with the bare minimum (or less) then becoming antagonistic when you ask for more help. I can't see my son managing with anything less than 1:1 aide right now. He's so destructive.

That's teally good news for Owen and Alex. Glad things are going so well!

Gewy, does he have to go to a public school? I completely understand your concerns, we've decided not to enroll him this year, at least until he has an aide. Kindergarten would be just impossible with the destructive meltdowns and lack of toilet training.

We were able to get a 1:1 aide (and he does need it). Alex is in a public school. We've benefited from a lot of good advice from the strong parent advocates in our community, as well as being assertive (and probably luck is involved too). You can do it, gewy. Good luck. And to you too, Eleima. Alex is a lot better with potty training, but still needs help. Stay hopeful - Alex still has bad meltdowns but we do see (slow) progress.

Listened to a really interesting elegy/interview about Oliver Sachs and autism the other day - thought it might be of interest:

So a thing happened. Matt and I had to take a train trip, about one hour, we left around 9am. He was mostly well behaved at first, except he kept bouncing up and down and all over his seat, not sitting still for a moment. Towards the end, it got more complicated, he wanted to lie down on the floor and I wouldn't let him, so ensue meltdown.
A young woman seated behind us kept sighing loudly and eventually kicked Matt's seat pretty fiercely. I turned, looked her straight in the eye through the crack between seats and said "that was not necessary."
We arrive at our destination, the meltdown continues because he won't wear his coat or shoes. People start filing out while I ignore Matt and keep him from spilling out into the aisle. One kind man asked if I needed help to deboard which I was grateful for, but declined, since I just needed him to ride it out. Along comes an elderly woman who decides to rather audibly mutter something about my poor parenting skills. I was so angry. I'd been calm the entire while, handling Matt's meltdown but having other people make it harder than it already is... I was furious. I turned and spat "he's autistic, you **expletive**" Needless to say, she didn't have anything to respond.
People are ignorant and judgemental. Ans that's okay. I used to ignorant and judgey too. But I never would've said a word. That old hag just added insult to injury.

My kid is non verbal, destructive, isn't potty trained and almost four. I see very little improvement in the past year and can't reasonably expect any in the year to come.
I don't need to deal with this.

I know PurEvil had the incident in the dinner when a kind Samaritan came over and even paid the bill, but have any of you been in this kind of situation,? And how do you respond? I try not to lose my cool, but this was too much.

Eleima - I'm so very sorry you were both treated that way.

Just as a parent, when our kids were little there were moments they behave poorly because they were tired or cranky or any little thing that is completely understandable. I've always appreciated when other people choose to assume you are doing the best you can under the circumstances and have always tried to make sure I share that simply act of kindness when I face those situations with other people's children.

Big hugs to you, Eleima. That's trial by fire, no doubt. I know that you are a caring and loving mother and are doing your best. As is Matt. Shame on people who can't find it in themselves to be kind (though I've been there and try to do better). I try to think that many people are more like the man who offered help.