We are at loss as in how to deal with DS! Help please! Long

July_2009

A little background: DS is 2.5 and is on ASD. He is getting EI (ABA) and OT for sensory issues around 5 hours a week. He goes to full time day care. He is verbal but mostly echolalia. I don't even know where to startreally! We are just getting overwhelmed by the day. I took up a new job and am not starting till the end of this month, so I am able to spend more time with him of late. This has really shed a new light on what areas our areas our son is lacking or rather, we are lacking skills in.

The main issue with him is surrounding his discipline/communication. He will NOT listen to us, the parents. At school, he is supposedly very good, well behaved and no issues. At home, he is the total opposite.  I am sorry if I sound like I am complaining, but what I am trying to say is I have no idea how to deal with my DS's issues. And don't get me wrong, we are really grateful to have our son, we had him after many years of marriage. But we just don't know what we are doing wrong.  I have read books, I have checked out youtube videos on disciplining kids with ASD, I have spend hours discussing with our therapists, tried time outs, but nothing seems to be working and really, I am at my wit's end.

He never listens to us, all our day goes into saying "No, don't do this, don't throw that"  all.the.time. Right now, he is making the office room a mess because I am typing here and not paying attention to him.  Now, I understand that this can be typical toddler behaviour and all we need to do is keep reinforcing his good behaviour with Ipad and bubbles (his favourites) and being consistent. But trust me, to the extent of sounding like a broken record, it is not working with DS. Any time we try to redirect, reinforce, or be consistent with something,  He just throws stuff around when we try to talk to him, he falls on the ground and cries if we want him to do something our way.  He either gets his way or takes the highway. He just wants free reign all day.  I watch him during therapy sessions and I notice how his therapists redirect him when he gets all upset or defiant. We try to use the same techniques at home, but they are a big fat failure. It seems to me like we are not doing something right.

As examples, He stops giving us eye contact when we want him to listen to something for example. As another example, if he is not getting attention, he uses the "I want to go pee pee" trick (he is being potty trained) and gets our attention right away. Or if things get strict around here, he uses "I love you mommy" and hugs me to get me to be nice to him. or starts singing cutely so that we laugh at him and he can carry on with his free reign. If none of these work, he simply throws anything and everything around and becomes uncontrollable. He will keep crying for however long we ignore him and then if I stop talking to him, he tries to come and hug me or try to communicate by bringing his favourite book or puzzle.

I just feel like as parents, we are doing something wrong that our DS does not listen to us. This is becoming endemic and he is showing such behaviour even when we are in public limiting where we go. We are not confident we can handle him in public, so we are not even setting up play dates for him limiting his opportunities for social interactions, which is his biggest area for improvement.

We really need some tips on how to get kids on ASD to at least get to understand what the parents are saying. I am not looking for a magic pill that will better our situation, but just some direction on what other parents are doing to set limits. Also, I should mention that  there is a whole set of other things going on with DS, he has sensory issues, he has weak muscle tone, he limits himself to just a few foods, he won't feed himself at home, so on.  However, he is  very good at numbers, remembering the lyrics of songs, labeling, using new words, using new toys, understanding how things work, understanding when we are getting angry (as in he can read our feelings).

Any tips, suggestions, would be really appreciated to get this household in order. Thanks for reading my post. 

ETA: Did I mention, he is starting to hit, bite and pull my hair out if I don't give him what he wants! 

July_2009

-auntie-:

As another example, if he is not getting attention, he uses the "I want to go pee pee" trick (he is being potty trained) and gets our attention right away. Or if things get strict around here, he uses "I love you mommy" and hugs me to get me to be nice to him. or starts singing cutely so that we laugh at him and he can carry on with his free reign. If none of these work, he simply throws anything and everything around and becomes uncontrollable. He will keep crying for however long we ignore him and then if I stop talking to him, he tries to come and hug me or try to communicate by bringing his favourite book or puzzle.

 

This degree of sophisticated manipulation is somewhat unusual in a child so young who has an ASD dx.

However, he is  very good at numbers, remembering the lyrics of songs, labeling, using new words, using new toys, understanding how things work, understanding when we are getting angry (as in he can read our feelings).

This, too, is very unusual among kids with an ASD dx. One thing that always amazed me was how, when DS and his friends or carpool cohorts crossed the line behaviorally that it was the other kid who got the nonverbals well before DS did.

Are you comfortable with the dx as being correct and thorough?

I mean, saving the worst behavior for home where there's less structure or less clear expectations and unconditional love is pretty typical of this crowd. So is the need to control others. But the manipulation is really atypical at this age. Perhaps you need to get a behaviorist to consult and make a behavior intervention plan you can implement.

We got ASD diagnosis when DS was 21 months old. It was my DH and I who noticed something was off about our DS, so we asked around, talked to our then EI physical therapist (DS didn't walk until 16 months) and got an appointment with Dev Pedi at Children's specialized and they gave us the diagnosis. I think the diagnosis is accurate because:

At 21 months, DS was hardly speaking any words, if he did, he was just saying a few.  His speech bloomed since, but now is scripted (as in something he heard from somewhere), echolaliac.He still has very fleeting eye contact, does not like to mingle with kids his age, he is very social with adults and boys around 5-9 yrs old, but he doesn't see his peers. He just runs right through them and tends to be on his own.  DS does not understand if given choices, he does not say Yes..he uses No for both yes and no answers. And he has a tonn of sensory issues going on which we are working on with an OT. 

So, I am not an expert on ASD, but I know that DS has something going on, they gave him an ASD diagnosis and we took it with face value. But a lot of the things mentioned above seem to belong in the ASD diagnosis too, isn't it?  

July_2009

-auntie-:

A lot of what you mention sounds like ASD, but the manipulation at that age is odd. Maybe there is something else going on as well that will be clearer over time. Some of this sounds almost ODD. The two can be comorbid in rare children.

Thanks for your response. I just read about ODD and it sort of describes me until into 20s. I was the defiant, horrible kid no parent would want, often angry (even now), very tantrumy, sometimes violently and so on. I am really hoping my DS never ever gets into those situations which I had been in, losing friends, being alienated by others because I had no control over my feelings and temper. 

I hope whatever DS has, we are able to help him get better and be as social and friendly with everyone as possible!