What is this? Long, sorry.

[Guest guest]

What is it in my ds that makes him need to control things and have to live life

in reverse until he gets it right? Here are some examples:

Tonight he was overtired at bedtime (which always makes it worse). He saw his

cash register and wanted to play with it. I had to tell him no because it was

bedtime. We were in the middle of his bedtime ritual and we were supposed to be

at the point where he gets 20 kisses from me. I kept trying to redirect him,

but no matter what I would say or do, he just said he wanted to play with his

cash register. I finally told him that if he wouldn't do kisses then I was

going to leave the room. He was still stuck on the register, so I left. Then

he ran after me screaming and agreed to do kisses, so I did them. Then it was

supposed to be Daddy's turn for kisses. But Daddy did big brother's kisses

while my ASD ds was freaking out with me, so he then wanted Daddy to redo big

brother's kisses before he could have his own kisses. I could go on...

This type of stuff can rule our days. We try to accomodate him as much as

possible. We do require that he ask nicely (because he always demands first),

but we try to let him control the world as much as he needs to. However,

sometimes we just HAVE to say no, and MAN he just can't let go.

Okay, so I know this is autism, but can you all help me more with what this is

both in definition and causation? Is this OCD? Is it stimming? Is it both?

Is it stimming until he can't do it any longer and then it is OCD? For

instance, if he is singing while arranging magnetic numbers at the refrigerator

(pretending he is playing with a CD player) and that got " messed up " somehow and

led to a tantrum, would that have been just OCD or a stim that he is OCD about

or just a stim? Am I making sense?

This used to be a HUGE problem for him. Then he was doing so well with all this

stuff up until a few months ago and then he got worse. I can't figure it out.

Mb12 shots seemed to make it worse, so we stopped them, started folinic acid,

and restarted. He did seem to do a little better after a week off the shots and

did seem to get worse again when restarted, so we pulled them again and haven't

restarted, but haven't seen a difference going off this time.

He definitely got worse when we tried Super Nuthera, so we pulled that after 6

days.

These particular behaviors didn't really change one way or the other when he was

on a month of Diflucan.

This is the worst part of autism for me. My ds has done incredibly well in many

areas during this same time period. His verbal skills have jumped tremendously.

He has had big cognitive gains. His social skills have improved a lot. His

pretend play has improved, etc. BUT he just gets so STUCK. Sometimes I feel

like we are living life in reverse so he can go back and " do it right. " This

particularly happens when he won't cooperate and we have to make him do

something. For instance, if we have to cross a parking lot and he refuses to

hold my hand, I have to take him by the hand anyway or pick him up or whatever.

He then will tantrum until he can go back and do it again cooperating the second

time. Most of the time, we can get him to cooperate the first time, but

sometimes it doesn't matter what we do - he just won't cooperate the first time,

so instead we have to have a tantrum and then a replay. Sigh. The saddest part

to me as that this child was literally the happiest baby EVER for the first year

of his life. I feel like he struggles so much now and has lost that happiness

(although he is much better now than he was when he first regressed.) He

struggles so much with feeling grumpy and tired and controlling.

So many of his " delays " aren't even true delays. His OT can't get him to do

anything because he doesn't want to do it. So she may have had to evaluated him

as being unable to do a skill, but it is because he WON'T do the skill. She

couldn't get him to draw a straight line, but all on his own, he will draw

letters from the alphabet. I feel like we spend a lot of therapy time spinning

wheels because she is trying to teach him to do stuff he can already do. His

problem is that he WON'T, not that he can't.

We call him (lovingly) the beautiful tyrant and have figured out that he WILL

take over the world someday (hopefully for good purposes.)

I don't know what to do for him...I don't even know what he is struggling with

(OCD, stimming, pain, naturally detoxing something as he gets better, high

testosterone, high mercury, low serotonin, or....????) It is weird how he is

getting better and worse at the same time.

He does well on high vitamin A (we have done it twice), he has sky high mercury

(no chelation yet), and is on SCD, CLO, trienza, vit D, selenium, and folinic

acid. He just started Pro-Bio Inulin free probiotics three days ago. Before

that he was doing only Acidophilus.

We really should get him back on mb12 not just for his methylation pathway, but

because he is deficient in it. He also desperately needs vitamin C as it came

up as a zero on his testing. He was supposed to be getting that in his SNT. He

isn't supposed to take high amounts though because his oxalates did come back

high.

Okay - sorry so much information, but I wanted to tell y'all enough to go on.

Thanks in advance,