2.27.2010

Confusion says....


I have found myself back in a place I visited shortly after the diagnosis. 

Confusion.

Winter break was a rollercoaster. 5 weeks off, some time at home, lots of time spent traveling here and there, no real schedule or routine. We had a couple of good weeks and a few really rocky ones. Therapies were hit or miss, with an insurance glitch and vacations. Out of nowhere, seemingly, came this flash flood of behavioral stuff I just wasn't quite expecting. Meltdown city is where I live on any given day. If he isn't melting down, he's engaged in a preferred activity. There are moments where he is just playing nice and engaging with his sister, being silly or complying with requests -- but the overwhelming part of his day is spent in His world with His rules and His expectations. Now, I don't mean he's in a corner all day perseverating on letters and numbers ---- but if the day isn't going just as he plans, we are all in for a real treat {insert sarcasm}.

Potty training is exactly the same at it was. 100% prompted for pee, though we can go whole days without 'accidents', it is 100% controlled by when and whether we send him and how compliant he is or is not. He lacks the piece where he understands he NEEDS to go. He is unaffected by the accident itself - not upset - not needing new clothes - he can go on about his regularly scheduled day and not care. 

My poor boy has now been restricted from playing computer since Thanksgiving because this reward is solely attainable through pooping in the bathroom [our system is supposed to help him move toward the potty, but he only has to start IN the bathroom to reduce anxiety and show us his ability to know ahead of time] and he is not able    .....or is he?    .....I don't know.  I am up to my eyeballs in poop filled undies in our attempt to give him enough TIME to 'get it'.  
......Is it helping?      ........Is it hurting?

All of our reward systems put in place (after our psych consult) have hit the trash. Revamped over the past week.

I've got 3 books started, none finished, and about 5 more on a waiting list. [see booklist]

The current influx of confusion has multiple levels.

I have compassion for my Three-and-a-half year old little boy who, at least on SOME level  isn't wired the same as my two-year-old. And at the same time, his language, his manipulation, his abilities make me think....... is using a different kind of discipline or support just giving in?

So, where is that line? Where do I draw it? What DOES he get and what does he NOT get? I feel like a failure at discipline.....    ..... or do I? 

xx  time out doesn't work
xx  popping is not an option {reaction is incomprehensible}
xx  delayed reward only turns into a debate
xx  immediate reward turns into perseveration
xx  natural consequences turn into all out meltdowns

Does he willingly choose to not comply with getting dressed for school in the mornings because he deceitfully and manipulatively wants something else? Is it anxiety? Is it a problem with routine? Is it a mom-softie giving in too easily? Is it inconsistency?

I wear two hats.

One hat is my ASD hat. When I put it on, I believe my son needs me to help him be better. To help him navigate. He needs me to steer him through the ever confusing world that doesn't conform to his ideas. When it is time to leave or we are late - he wants to change the clock. When there is no address at a business - he wants to put one there. When he thinks it is time to do X,Y, and Z -- there is no alternative. I am there for him to navigate with him and help him understand the world doesn't rotate around HIM.... and I don't want to punish him for disobedience that I don't even know if he understands. And then there is the sensory piece. Maybe the material is upsetting him. Maybe I forgot a part of the routine he has in his mind.

And my other hat is my mom hat.  The hat that holds expectations. It tells me that I have allowed him to 'get away' with manipulation. It tells me I have let him down by not expecting more. It tells me to put him in time out and show him that there are consequences to our actions. It tells me that he doesn't want to get dressed because I have allowed him to take control.  It tells me that I am babying him and he will never learn if I don't make HIM do it himself.

I am certain I need BOTH hats and neither works well without the other.

********************************************************************
My main problem is confusion. 

It used to be about diagnosis. Then it was getting others to understand him. Then it was finding the right therapists. Then it was preparing for the IEP fight to help them understand the disconnect in ability & deficit.

All of that is over and somewhere along the way he started growing up. He's 3.5 and the expectations of a child growing ever closer to 4 are just different than that of my tender 23 month old who was newly diagnosed. It isn't just about sentence length and motor planning anymore.

It didn't always matter where on this spectrum he fell. And now, all the sudden it does. 

If i could just understand why he does some of the things he does. If I could just understand his comprehension of the expectations we have for him. And so I read..... in hopes to find a profile that helps me to understand my boy better. And to be a better mom, too.

13 comments:

Queenbuv3 said...

First, don't forget to breath. You're son is chronologically 3.5. But where you need to SEE him is where he is developmentally. You really have to throw out what he should be doing according to his chronilogical age. This can be very hard for a lot of parents to face. Our son is 11 and although he has areas of skill that are at a second grade level, developmentally he recently tested at about a 3.5 year old. But numbers don't matter unless they help you help your son better. We have always looked at our son's progress compared to where HE was. If you constantly look at where your son should be compared to peers of the same age you will be upset and put unrealistic expectations on him. You really need to look to him for cues when he is ready for potty training and other "skills". He probably isn't able to understand many of the things that are expected of him or isn't capable of meeting expectations because of where he is developmentally.

Our son was not fully potty trained until he was about 7-8. We used to put underwear on him with a pull-up over it when he went to school and out in public so he would feel uncomfortable when he went his pants but not make a mess. At home we let him go in his pants along with having a schedule for going to the bathroom. I cleaned dirty poopy underwear for two years. Any time he went in the toilet we gave him lots of positive reinforcement through verbal praise. Punishment in the form of not earning a prefered item or activity does not motivate anyone to potty train. And just as you are beginning to see you can't make someone use the toilet. He has to not like the mess and discomfort of going to the bathroom in his pants and/or enjoy the praise and sense of pride he gets when he does go in the toilet. With his sensory issues and developmental delays he is probably just not capable of doing it right now.

I hope some of this helps.

Brenda said...

My son potty trained at 2 1/2. The earliest thing he's ever done for milestones. But here's the thing ... He's potty trained in that he can hold it. He cannot tell that he needs to go to pee or poop. Physically cannot tell. So I prompt him. If he is under stress for whatever reason (feeling sick, too many people, strange place, traveling, etc, etc), he will go in his pants. Because he can't figure out what his body's telling him and what it means. This is true for every body sensation: sleepy, hungry? He can't tell.

For me, it absolutely helps to know that this is a neurological problem with him. Not behavioral. That's why no amount of rewards or punishment would help him. And that's what prevents me from saying "he's x years old; he should not be doing this."

Hugs to you. Hope you find your resolution soon.

Brenda said...

Oh and P.S. We are still not night trained and I'm fine with that. Getting sleep is a priority in our house!

A little boy just 3 years old said...

Thank you for your thoughts. I think this is the primary reason I need to understand him better. I've got all my books and have only had a few moments to read. It is very deceiving when he's passing SOME goals so quickly. I just don't want to do him a disservice by quitting and I don't want to make him suffer.

The 'taking away computer' was never meant as a punishment. Actually as positive reinforcement. It was supposed to be taken away because I needed something highly motivating to encourage him to understand what we were meaning about going poop in the potty. I have taken 2 opportunities to help him be sucessful (when I found him just prior to going in his pants and moved him to the bathroom and praised the wazoo out of him) and he got his time on the computer. But it didn't translate.

It's very hard to just QUIT something you've been working so hard on. It isn't a clear cut thing that can CANT do it....there are signs. But, for now I will try to find time to read my books, understand better and hopefully figure out what is best for him.

goodfountain said...

I can relate to this a lot. I always wonder whether I should be disciplining Charlotte differently (more strongly) than I do.

Also, I get what you mean about passing some goals so quickly and others taking longer. It's uneven development and part of what makes them who they are.

It is true that our kids don't respond the same way to discipline as typical kids. My younger NT daughter is a great example of that. The 'standard' discipline techniques really do work on her. With Charlotte, they didn't. Especially at 3 1/2. Now, it's much better at age 5 1/2. MUCH better.

As for the potty - I am of the opinion that we as parents need to back off and our kids will train when they are ready. If you don't want to go back to diapers all the time (and who can blame you) I would teach your son to ask for a pull up to poop in. We did that for 9 months before Charlotte poop-trained. She'd ask for a pullup when she needed to poop.

You don't want to get into a battle of wills or a power struggle regarding pooping -because you will most definitely lose.

If I remember rightly when Charlotte was that age, I focused on doing my best to ward off meltdowns and negative behaviors by removing things that caused meltdowns and behavior. I tried to make it easier for her to be successful rather than more difficult.

Best of luck. And just so you know -three was most definitely the hardest year I had with Charlotte. It's going to get better.

A little boy just 3 years old said...

Goodfountain, I keep up with your blog and have thought for a long time that I needed to listen good to you b/c your little one makes me think SO much of my own. I even ran across the comment you left me about a year ago stating that, yesterday.

Im just so glad to hear that my choices of discipline now won't harm him for life ;) because some days that's how it feels.

We try and try and try to have him tell us he needs a pullup and poop in the bathroom but he wont (or cant). That is our goal right now. I've helped him be successful at that twice and rewarded him with his favorite computer games. It didn't help, not yet anyway.

The pooping is so random, I have a hard time catching him. But he SEEMS to get it. It is SO hard to figure out...which is why we haven't stopped yet.

We've definitely tried to lower the anxiety around it & we never make him feel bad when he goes in his undies. It's hard. There is no real clear cut answer b/c at SOME point I am convinced he will need help, he is not going to potty train himself. No parent just wake up to a potty pooping child (ok, maybe a couple) --- so I feel that I will have lowered my expectations on what he is capable of if I don't help him with this.

Thanks for commenting!!!

What kinds of language goals have you had over the past year? Has she been in speech? I notice she also has advanced vocab, etc... but I KNOW there are still issues. Your input might help me some.

Queenbuv3 said...

I find it interesting how goodfountain gave you pretty much the same advice and you kissed her butt and basically told me thanks but I know what I'm doing.

Taking any of my advice is not going to make your son severely Autistic. I feel like you don't want to hear anything I say because you think my son is the way he is because my husband and I somehow did things the wrong way in raising him. This kind of attitude is what is fueling the fanaticism in the "cure" and "anti-vax" crowd. I'm sick of people making the assumption that our son is severely affected by his Autism because we somehow failed to do the right things to help him when he was younger.

I give you and other parents of very young children with developmental delays who may or may not be on the spectum because I have been through everything with my son and want to help other parents have more support and maybe make things easier for them then they were for us when our son was little. We didn't have all the media attention on Autism that there is now. We didn't have blogs to read and get advice from other parents.

If you don't want my advice and are just going to reject everything I say than just tell me and I won't waste my breath.

I really think you need to put down the books unless one is entitled how to raise-insert your son's name here-and just enjoy what he can do. You should be counting your blessings that your son has verbal communication at 3.5 and likes social interaction. The skills you describe him having right now are light years beyond skills my own son has at 11. So many parents would be thrilled to see those things in their child.

Sorry if this sounds harsh and forgive me if I am wrong but sometimes the truth hurts. I'm just thinking about your poor little baby (3.5 is really little) with all this pressure on him to perform constantly. He needs some space to just be himself and not constantly be under a microscope.

What is the worst thing that might happen if you take a break from analyzing, reading and scrutinizing everything he does? You might enjoy him for a minute and realize he is a really special kid and he is doing the best he can with what he has to work with.

By the way, we did have to stop potty training for a while and he still potty trained just later than most kids. Sometimes you do have to "just QUIT something you've been working so hard on." Because it isn't working. You're son is the one doing all the work and under all the pressure to meet expectations.

A little boy just 3 years old said...

Woah Queenbuv. I am very sorry if I have upset you by my silence or something I said.

I have known for quite some time now that Goodfountain's daughter and my son have a lot of common ground. It was a very easy response for me. Your thoughts and comments were not as easy for me to process, so I was planning to come back and re-read later when I had more time.

I think you have run across some who may fit the profile you state, but that is not me. Your words are overly vicious ....I am very sorry I upset you to that point.

You did make a lot of assumptions about my boy and how much I do or don't love/care for him.... but I never made any about yours. I do not subscribe to the voodoo of cures and antivax. I do not think ANY parent is to blame for the severity of their child's autism.

My child is different. I can reflect on the experience of SOME others, not everyone.

I do not state his verbal/social stuff to upset anyone or to make anyone feel he is better than or worse than any other child. Just because we don't live the same difficulties YOU do, doesn't mean I can just sit back and relax.

For all of the great, awesome, wonderful stuff he has.... there are also things that have me on my toes constantly. It is not my choice that I either have to appease his special interest in business numbers and calm him when he can barely breathe he is so upset that the post office has not got an address on the building. I know there is something I can do to help him with that better. It is NOT ok to continue giving into this level of anxiety.... so it is not an option for me to put down the books and just sit back and watch his life play out. Without some help, some intervention, some therapy....

This blog, as I have stated in the past, is not a place for me to document my life as a whole. This is where I come to parse out and unload ASD. I cannot base medical/psychological/developmental/neurological decisions about my son's care on blogger comments. I do appreciate others sharing, and I don't mind sharing.

But, wow. If my blog upsets you this much, you are welcome to take it off your reading list.

I am very sorry.

Queenbuv3 said...

"Just because we don't live the same difficulties YOU do, doesn't mean I can just sit back and relax." What is that supposed to mean?

Because your kid is higher functioning you think that all this obsessive and relentless intervention is going to cure him? And that because my son is so severe that we have become lazy and complacent in helping him make progress? What makes you think we don't do everything we can and put in a lot of effort, without pushing our son too hard or having unreasonable expectations on him, to help him make progress and become more independant?

Maybe if you ever read my blog you wouldn't make such offensive assumptions about our level of effort to help our son. Wow.

And if you aren't taking time to relax and enjoy life and your son you are missing the point of having children. God doesn't make garbage and children with special needs are here for a reason and have the right to be happy and be themselves. Acceptance doesn't mean doing nothing. Your level of effort to change your son doesn't mean you love or care about him more than I love or care about mine.

There is a reason why many of the things you are trying aren't working. Which was the point I was trying to make about where he is at developmentally along with his sensory issues and anxiety as apposed to his chronilogical age. The definition of insanity is doing the same thing over and over and expecting a different outcome. When you try something and it doesn't give you the result you are trying to achieve you need to stop and try something different or just stop and let things take their course. It sounds like you have so much anxiety and stress yourself around your son's issues.

I have faith in God and let him guide me in every area of my life. My son was given to us for a reason. God trusted us with his care and knew we could love and accept him and do everything we could to protect him and help him. I have discovered over the years that I have very little control over many things in my life and it's better for me to listen to what God is trying to tell me and sometimes he is telling me to let go and let him guide me down the path I am on. I don't believe that anything happens by chance. You are still a good mother if you accept your son "warts and all" and accept that he isn't perfect and accept that sometimes you are suppposed to just sit back and relax and not try to fix everything.

I hope you can find some peace.

Scott, Bri, Elijah, Abigail said...
This comment has been removed by the author.
A little boy just 3 years old said...

It was in relation to your comment that I need to stop reading the books and obsessing. I am really done being on the defensive.

Thank you for your insights & I really do wish your family well, I know you do a wonderful job and are a great mom.

Chelli said...

I think that you and I are in very similar positions with our munchkins.

My son is 39 months old and we have been going through the potty training thing off and on for a few months now. Noah goes in the potty if we prompt, but never lets us know if he has to go and rarely lets us know after he has went.

The discipline has definitely been an issue. We also saw a psychologist (2 of them actually) to see if they could offer any suggestions. We were given a few different ideas, but none of them have really worked all that well. It's really hard because it's hard to tell if/when Noah is just being manipulative or he really doesn't understand what is expected of him.

I also try to read as much as I can, so that I can find anything that may help Noah. Keep up the good work!

goodfountain said...

Did you read my post on Caddywampus? Maybe you could write a story like that for him so that when, say, you get to a building that doesn't have an address you could say, "Oops, they forgot to put the numbers on the building! Caddywampus!" The whole theme of the book is that there are things that are out of our control, and when that happens we acknowledge it and then move on.

Maybe we could email and I could give you some more of the specifics of how the book is written. It has helped Charlotte a lot with dealing with what she perceives to be mistakes. The unexpected. It's like a code word for her. I don't know if your son would respond as well given he's younger, but it's worth a shot. Maybe his SLP could help?

As for current speech goals, hers are in the realm of staying in conversation. With adults, she's great. With kids, she tends to fade off. There will be a few rounds of back and forths and then she spaces out. No real clue on why. Just part of ASD I guess.

What helped a lot was last summer she did a group social skills class. It was after that class that I noticed she began to initiate conversation with other kids. The first one I remember was her telling a little boy, "I like your shoes." It was so funny. They had a little convo (he was ASD too) about his shoes.

Her language really took off when she turned four. That is really common among hyperlexic kids. I wouldn't be surprised at all if that's what you see, too. Lots more spontaneous language, more commenting, and a much better job of answering questions.

Hang in there! You are doing a great job and I admire your tenacity in working to figure out how to help him. That's about all we can do!