Thursday, October 27, 2005

I'm Having an I-Hate-Autism Day

GRRRRRRRRRRRRRRRRRRRRR!!!! I'm going to try, my dear friends (and you are all my friends by now), not to rant and rave and get to down, but las night was REALLY shitty. Not SmallBoy, but with Ex's take on Asperger's.

He called last night and asked me about SmallBoy's behavioral therapy. I told him that it was going well, but we've only been twice, since insurance only allows so many visits/year, not to mention that in the second visit, the therapist is still doing background work with him. You see, SmallBoy has issues listening when he is at his dad's for the weekend. He just doesn't do it. Ex also has a new baby, about 3 1/2, 4 mos old. SmallBoy doesn't really know how to interact with the baby, nor does he really know how to express his frustrations that he really likes the baby, but can't play with him. SmallBoy also doesn't understand that he can't really get right in the baby's face or play rough with him like he does with his brother and sister. Not only that, but there is always that underlying issue of jealousy. The kids are with their dad only two weekends a month, so SmallBoy a) still hasn't adjusted to the new baby, even though he loves him to pieces (he told me that he thinks being a big brother is wonderful and that he loves having a little brother. In fact, he asked when PC and I will be having a baby - not gonna happen, but still....), and b) still wants his time with his dad - alone, without baby in tow. I told Ex that perhaps time alone with SmallBoy would be a good way to make him feel special. As a matter of fact, I suggested that Ex take SmallBoy to his Cub Scout meeting tonight.

Ex went on to express the fact that he and his wife are concerned that SmallBoy defies them and won't listen to either of them when he is at their house. He said that LargeBoy and Girl constantly have to yell at SmallBoy, that he flips out and has tantrums like a baby and makes up his own rules, not abiding by the house rules. He says he has mood swings. (Is anyone else thinking, "Hmmm, isn't that all about ASD?") I explained to Ex that SmallBoy is on the spectrum. I had to cut it to the quick for him and say to him that Asperger's is a form of autism. He replied to me with, "We've read that book on Awsperger's and we know all about it. He shouldn't act like this."

Wait. It get's worse. He then went on to say to me that, as much as it pains him to do this, that if SmallBoy's behavior doesn't change significantly in the next visit, that he will not be able to have him on the weekends because he fears for the baby's safety. I was FLOORED. My SmallBoy wouldn't hurt a flea. He needs assistance with social skills, with how to act in certain situations. He needs to learn how to find the language he needs to use to express himself properly. I told him that he needs to do a lot more research on ASperger's. I said that I communicate with other parents every day who discuss all of these same things. That SmallBoy is not just being a problem child. That he is not just defying his father. Hell, he listens to me. Yeah, we have our bad days and our good days, but that's the nature of Asperger's. I know what to do, how to work with my little man. Ex does not. I told him about blogs and Asperger's and autism sites.

I told Ex that I am doing everything that I can to assure that SmallBoy lives a very successfull life, but that takes MONEY - something I don't have. Ex refuses to contribute anymore than he is legally required, which makes getting SmallBoy help extremely difficult. And I told him that. I said that insurance only covers so much. I was just absolutely fuming. I know that I'm still missing elements of this conversation with him because I'm so infuriated.

After I hung up with him, I told PC what was going on and he just held me while I cried. How can he deny his own son simply because he is "difficult" (or because he doesn't know what to do because he's not fully educated in the ways of ASperger's). I likened this to people who would institutionalize family members because they were "weird" or "off" or "strange" or "difficult". And please forgive me if this sounds awful, but I have to say, that I'm extremely lucky that my child is "easy", as far as the spectrum goes. His receptive and expressive language is for the birds, his social skills suck, his mood swings are godawful, but he is such a wonderful boy. He is loving, caring, compassionate, sweet, friendly, for the most part - happy. But you know what? Even if he was "difficult" or more severe, as we say in the ASD community, I would still love him and do everything in my power to see that his life is as perfect as I can make it for him. He is my SON. God, I'm just SO livid.

We've all written about people who don't get it. Never once, however, have I seen a parent of an ASD child who doesn't get it. I understand that he is not with SmallBoy on a regular basis. I understand that it's a really hard thing to accept, that your child is "different" than other kids. So what should one do in this case? Research. Educate yourself and others. Make an effort to understand what causes this and what to expect from your child and, more importantly, how to teach your child, how to understand your child, how to work with your child, how to make sure your child knows that you love them UNCONDITIONALLY.

I could rant on long and loud, but my head is really starting to throb with anger right now. HELP.


Anonymous said...

Did you tell him that the Drs./clinicians who tested him last summer said he was very "high end" successful BECAUSE he had such a good, loving home!! That he surprised them with how well he did in many areas BECAUSE his mother had done such a good job with him? I have seen you with him....there must be negative vibes at Ex's house....what part of adjusting to a new baby doesn't he get???? He needs to take Smallboy somewhere away from new wife and baby. Time alone with Small...well, you know all this. Perhaps talking to new wife....she may have a better head on her shoulders. I'm as livid as you are. Fathers in general don't always "get" their kids as well as moms....but this is so important!! Hang in there....Small boy is SO lucky to have you!! Meem

Roni said...

I don't know what to say except that I'm sorry that the Ex is being such an ass. Also that mothers like you are an inspiration to me, esp on mornings like today when Ella was being a brat all morning and made me all pissy.

Anonymous said...

yes - Smallboy is extremely lucky to have you as his Mom! I would love to have a few words with Ex. I reiterate everything from Meem's comment and more. You give Smallboy so much - and he has a wonderful brother and sister to love him too. PC shows more love, patience, and attention to Smallboy than his own father and you have given Smallboy that as a positive in his life too. I too am livid that he should treat Smallboy that way. I'm with you all the way - GR

Octoberbabies said...

This is so incredibly difficult to deal with. Wouldn't you agree that the hardest part about dealing with Autism is how OTHER people deal with Autism??? India's autism never bothers ME. It's how everyone else responds to it (anger, fear or worse laughter) that infuriates and saddens me. It is especially bad when its your own family.

Because she "looks normal" I always find myslef having to super-explain her autism to people so that they don't judge her when she goes apeshit in aisle 5, you know what I mean? But with her I always have "part of her autism manifests itself in the fact that she doesn't really speak" to fall back on as proof that there is in fact an explanation for what others may mistake as "bad behavior". But SmallBoy speaks so it must make the explanation that much harder.

Sorry I can't be comforting, but girl, I GET IT!!!!

Deep breaths,

mommyguilt said...

Thanks everyone. I cannot even begin to tell you how thankful I am to have all of you and to be able to reciprocate this wonderful support back to you.

Amy said...

I am so sorry to read this and be able to tell all of the stress you have upon you as well as the hurt. You have been such a great sounding board for me and I am more than happy to reciprocate that :)

You are in my thoughts....

Eileen said...

I am very sorry to hear what you are dealing with. It must be extremely difficult to deal with an ex in the first place and then to add the fact that he just doesn't get or understand your son's special needs. This really sucks. hang in there, maybe he'll come around.

Juggling Mother said...

He's an idiot. pure and simple. tell him it's not a choice between having smallboy or not, it's a choice between seeing ANY of the kids or not. In the unlikely situation he choses none of them, then to be honest he was obviously intending to do that at some point anyway.

I had exactly the same argument with my mother a few months ago, where she said she didn't want Mstr A to visit any longer if he was not going to respect her. It got pretty heated, but I basically said that if she was asking me to make a choice between my mother or my kids, the kids will always come first, and they come as a job lot!

She failed to apologise, but she has been much better around Mstr A since!

Oh yes, Mstr A is only 5 anyway, and hasn't even been diagnosed yet, although we are all reasonably certain it will be some kind of autism & probably Asbergers when the Psych tests get done.

Fortunately I live in England, so once diagnosed he will get all the therapy/treatment he needs free on the NHS, so I am confident he will learn to interact acceptable in time.

We also have a small baby, he adores her, but also does not understand that he can not yell & wave his arms in her face. she's gotten used to it & finds it hilarious!

Sorry for hi-jaking your comments, but this really touched a nerve.

PM said...

So....the idiot shows his true colors once again. One would think he'd get tired of that crayon and find a new one in the box of 64 crayola crayons.

We've always known he is a buffoon. But, to make such comments about small boy is unconscienable (sp?) and down right dastardly.

I'd keep him home. It sounds like the atmosphere at the idiot's house upsets all the kids. And, quite frankly, they don't need it. Large Boy and Girl are so busy trying to keep Small Boy away from the idiot and the baby to minimize the stress that it's probably eating them up, too.

Sorry in advance....He is such and Asshole. I feel bad for the new Mrs. Idiot.

Hang in there. Your still the world's greatest mom. If I could be half the mom you are, I would be phenomenal.

Protect small boy at all costs. If you don't, who will?!

So, tell me, have you had to hold PC back from just kicking the s*** out of him? Maybe you should let him go....just a thought.

Love you. Call if you ever need a shoulder to lean on or vent too.

mommyguilt said...

Yep, that's pretty much what I thought you'd say PM! Thanks doll!

Thanks to all of you. You have NO idea...well, yes you do. You are all truly wonderful.

BIG hugs & smoochies to all of you! And to all of your wonderful NTs & ASDs!

Astryngia said...

Hi mommyguilt - I've just discovered your blog and before I get to say hello properly and nicely (like you do!), I'm really fizzing over your experiences!

You know...if he was my EX, I'd stop him in his tracks with a bit of high-end research viz : AS is passed down in the genes. The male genes.

I bet that would make a little silence in the conversation!!!


I'm about to have a rant about mine, so do pop on by and join in!!! ;-)

Moi ;) said...

I have a hEx who's a doozy, too. Tightwad doesn't begin to describe him. Idiot is clueless. Sounds like those moron boys oughta hang out!

All I can tell you is that maybe it will be better for Small Boy if he doesn't have to go be someplace where they don't "get" him, where they have no clue as to who he really is. If the child is so angry and upset with them as to defy them, and they don't try to help, well, he does not need more anxiety. AS provides enough of that when they hit puberty.

And if you need help and support, please join our Autism Bloggers ring (and Yahoo group). :) We're a friendly bunch. And maybe we can help you find help getting SmallBoy what he needs in school, etc.

Cheryl said...

I agree with moi & meem - Aspergers kids dont play up for the sake of it, they simply react to what they cant take. They cant take doublespeak, mixed messages, changes in system or routine. Things have to be logical and predictable and most of all fair. I'm really surprised that the change of importance in his father's life hasnt had him waking up with nightmares. He's doing great and so are you.
Found this because you visited my blog - and you've even linked me! Wow, thanks :-)

Marti said...

Oh, my dear. How we do end up dealing with so much more than parents of nts, huh? I have to agree with everyone who recommended that your children all take a wee break from their pere. If Large Boy and Girl spend their time being the interpreters for Small Boy (yelling at an aspie is akin to yelling at a person who doesn't speak English, btw ... just gets louder and more annoying, but not necessarily clearer) then they are parenting him. That is their father's job. Obviously that is a job he's having a hard time doing right now. My shrink said something the other day, which you may or may not agree with, but which struck a nerve with me, because my parents were so horrid and mentally ill and drunk when I was growing up ... "People do the best that they can do all the time." So, your ex has no gene for parenting an Aspie. Brand new information. He found himself a new wife and got himself a new kid. ... Small Boy has you and PC [who obviously gets it because he held you and let you cry]. I'm not familiar with being a divorced person, only the child of divorce, so I don't know if you have to do something legal to protect your rights ... that is, you don't violate the custody agreement and end up in hot water. I'd check that out, and then keep the kids home in their loving, stable environment without a baby. Perhaps Ex needs some time (I wish him hordes of sleep deprivation and colic). Perhaps something can be agreed upon whereby in a while Ex and the kids can do dinner out without the baby ... ease back into their "family" life with him (on the bi-monthly basis). So complicated is life, but I'm feeling for you. Keep looking into RDI ... you and PC can do it at home ... no therapists. Get the book and teach yourself.

Cheryl said...

I see you come out and comment sometimes, but worry how you are, and what happened with ex and smallboy.
Are you alright?