The radio

I've watched some movies recently, "Mozart and the Whale", "Adam" with main characters who have Asperger's Syndrome (purely for entertainment). I've read a little. Talked to a slew of other moms. I've come to my own conclusion that DS probably fits that label a bit better, though diagnostically, his language delay and toileting issues are not textbook for Asperger's.  Plus the fact that he's a bit young. Wherever he falls on the spectrum... it's not Kanner's Autism & I've been in overdrive trying to understand him better so i can be a better mom and advocate.  It is fair to say, I have been immersed & the asperger's books are helping more than anything else I've found so far.


Today marks a first.


For a long time, we've had pragmatic language on our speech session roster. We've worked on conversation volleys, requests, clarification, commenting, etc. It has only been very recently that, again, his language has exploded. He is still more on his own topics of interest and his longer conversations are usually tinted with lines from tv shows or his books on tape - but they are rather subtle - much of the time he steals their tone and not their exact words. He will even say, 'Look' to get our attention now, which is something that I JUST noticed today. He still has a long way to go, still needing plenty of instruction, but it seems as if he's met a whole new set of goals.  He's definitely starting to come out with some more original thoughts and needs.


I've never actually been a part of one of those conversations where you know that the answer that is coming out is far beyond the expectation of the original commenter. Until today. And even then, it at least started as something that might be expected from a 3 year old....and then he passed the line....and then he sprinted further..... 


Yesterday, we were at Walgreens. DS owns a little MP3 player, got it for Christmas. He saw this same little 'radio' at the store and debated me on buying ANOTHER one. What we would need another one for, I don't know. I imagine it was just his fascination that they sold the exact same one. 


Today, we took baby sis to the doctor. DS took his radio in with him. It is very quiet and I knew it would keep him out of mischief. When the nurse walked out to the waiting area she said,


"Oh, your radio is really cute"


His response, "Yeah, uh-huh. This is my radio. I got it at walgreens. We drove to number [address] 2956 in the black car. When we got there, we went in and walked to number [aisle] 9. It was Twenty nine dollars and ninety nine cents. It is blue with lots of numbers. I have 34 songs. Un-huh. Yep. I am listening to number 17 and I will listen to the whole song. when I get to the end of number 17 I will listen to number 18. I need to listen to the whole song...... "


I had to cut him off to go back to our room, but I would have loved to just sit there and watch this play out until he was done. 


I was amazed and in awe of all the words and sequencing that came out of his mouth. At the same time, I felt a bit sorry for the nurse who had made the innocent comment. And then, also, I knew this is a new thing we'll eventually have to work on. But I was just so happy to see him relating to a comment like that, I would have let him drone on and on all day if I could.

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.

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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.