Well I Did It

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I am going to be in deep doggie-doo-doo when DH finds out, but I did it.

Followed a recommendation and reference my therapist gave me (even though she thinks he's perfectly NT with maybe a little OCD/anxiety stuff going on, and in her very open-minded opinion this is going to set my mind at ease). Got DS5 scheduled for assessment.

10:00 Monday morning. Then I get to have a shiteating social worker drop by Monday afternoon to "fill out a welcome packet." Why don't they just say they're coming to assess the home environment and judge your family?? It would be so much easier if we could just be frank.

I'm really terrified. Not that he will or won't have something wrong (I would love there to be nothing wrong, but I have known for years that something is, and very probably what). Scared of the s**t I'm going to get in with Hubby.

Terrified that these people are going to turn out to be just more enemies. That, if they turn out to be nibshitting bureaucratic busybodies, I'll never get them out of our business. That I'm going to rub them the wrong way and it's going to be another case of another as*hole trying to tear our family apart, and all Hubby is going to have to say is, "Look, another mess you've made that I have to clean up. See, I told you so."

Well, wish me luck. Time to go dust things and hide the Playboys, survivalist literature, and alternative religion books.

Wonder if I can borrow a few extra cats from my neighbor and have him hunt me down an aggressive pit bull.

I hope all goes well, and this turns out to be a good thing. Good luck! It took a lot of convincing before DH came on board, but eventually he did.

Good luck. I know you have been under a lot of stress.

Maybe you can think of the SW as the path to services for your son if he needs/qualified for them. If you go in with the mindset that this person is judging you, you will feel judged regardless of anything this person may say or do or think. Life really is in large part your attitude. You've gone something courageous by doing what you think is best for your child despite having no support from your DH. Try to make the best of it and set yourself up for success.

Good luck to you.

I think my only piece of advice is that in life I have often found what I am looking for. IOW, try your best to clear your mind of negative thoughts and fill them with positive, hopeful ones instead. Confirmation bias and all that stuff. I know that is not easy. But I do think it will help in terms of "rubbing people the wrong way." You will be casting a positive glow instead of a negative one, ykwim?

Regarding your husband, sometimes as a mom, you just have to do the right thing, no matter what dad thinks. Dads don't get things the same way we do sometimes. No offense to all the dads here, but to be honest, MOST dads of kids on the spectrum that I have met are not involved enough with any of it to even THINK of coming to a forum like this, so you guys are not your "typical" dad of a kid with ASD. My hat is off to all of you and wish my kids' dad could be more like you.

I also just want to say that the first time my son was evaluated, I was told there was nothing wrong with him. 2 years later, no one would have said that. Trust your gut and instinct, no matter what the outcome of this is. Your diligence will serve your son well in the long run.

Again, good luck. I hope this is able to give you some peace.

just wanted to add that has been my experience too! Cant tell you how many professionals told me my son is fine, well adjusted, engaging, intelligent and intuitive child. Nothing to worry about....they get to see only the charming side of my son. TOok a long time to get an accurate diagnosis. I agree follow your gut it wont steer you wrong!

good luck!

Well, he probably is a fine, well-adjusted, engaging, intelligent, and intuitive child. I know mine is. He had an absolute ball "playing with the guy in the sweater with no sleeves." He's a mostly happy little guy with a bright personality. He's kind and sweet and helpful. The only thing I had to "scold" him for in the two and a half hours we were there was showing his 3 year old sister to the bathroom without telling me first (bear in mind I was 15 feet away on the other side of an open door and the whole office could probably have fit in my 1500 square foot doublewide with room to spare).

He's just a fine, well-adjusted, engaging, intelligent, and intuitive child who talks too much too long to the point of rambling, takes everything personally, cries too easily, and would still be twirling around in slo-mo on his tippy-toes flapping like a cross between a chicken and a toddler playing at ballet every time he got sad or scared or excited or confused or just plain bored if Mommy hadn't got a bad case of labelphobia and spent a few weeks drumming, "Don't do that. ret*d kids do that. Do you want people to think you're ret*d?" like Grandma did for me.

Point being, you can be a fine, well-adjustd, engaging, intelligent, and intuitive child and still have nonstandard wiring that causes you problems in a one-size-fits-all world with a massive NT bias. Can't change the world, so your choices are change the child, teach the child to cope, or leave the child to flounder and get sad and angry.

Well we didn't get off to a great start. MapQuest hadn't kept up with street name changes in Ellwood City, and I'm not familiar with it enough to know that. Spent 25 minutes looking for a road that had changed names and that ate up the time I'd allotted for getting lost in New Castle. All the street signs were obscured with snow, so we predictably got lost in New Castle anyway. By the time we got there I was too frustrated to remember that even numbers run up one side of the street and odd numbers run up the other, so it took us another 15 minutes to find the building.

This adds up to being over 30 minutes late-- but they'd had lots of cancellations on account of the weather, so they saw us anyway.

He spent about 30 minutes assessing DS one-on-one (or three-on-one, since I was filling out paperwork and you don't combine Bubby, toys, new people, and someone getting attention without DD3 wanting a cut of that stuff, and DD11 had a stomachache and thus tagged along). Then he spent about an hour and a half talking to me.

The guy seemed to have his head on straight...

...and it matters nothing. Now I'm sad and scared and worried and can't think about anything else or sleep.

And Hubby doesn't help. First words out of his mouth: "So what label did they give him?!?" Me: "Honey, I don't know yet. They still need to talk to people." Suppressing the urge to say something like, "Well, dear, my assessment took almost eight hours and then they had to think about it and talk about it for two weeks. I think I'd be a little skeptical of a 20-minute diagnosis, how about you???" Him: "Well I just want to know what we're going to have to fight."

Does everybody act like this?? Like the most important thing is avoiding a label at any cost and everyone's the enemy?? I'll be the first to admit, after the traps I've walked into going, "They're here to help; I'm not going to be afraid," I'm constantly paranoid.

Is any actual physical person actually here actually in my life actually going to be on me and the kid's side??? Is anybody actually going to think about how to get a happy, confident, self-liking little boy with strong coping skills out of this, as opposed to worrying about appearances or what's going to make the school's life easier????

My therapist swears this is supposed to be help and advocacy for us. FOR HIM. Is it really going to be?? And what am I going to have to fight in my own damn home and family to get there?? ONE actual flesh-and-blood person actually backs me up here. And HE is not my husband, not my brother, not even family, and can be readily discredited with, "He doesn't have kids, he doesn't really care, we don't mean anything to him, he's 300 miles away and only sees what you tell him, and we won't go into what's wrong with HIM."

Actually, I was kind of impressed with the psychologist. He seemed genuine. He took time with us and I think he listened to what I had to say (not that I'd know right off the difference between actually listening and merely letting me run my mouth, waiting for me to hang myself). He didn't do something quacky like give us a 20-minute diagnosis. He wants me to consider medication (of course, they all do) but has to admit that 5 is too young to drug and it doesn't have to be the first thing we reach for.

At first he laughed when I started using clinincal terms-- I have a thick accent and don't always use correct grammar and I was already rattled from getting lost and being that late-- and seemed shocked when he asked about my level of education and I said "Bachelor's." I think he was expecting to hear "high school education" or "GED" or "finished 10th grade." I guess not a lot of educated women choose to stay home and raise their kids?!?! Those things kind of pissed me off-- but that's a pretty common local bias. Housewives are uneducated and people from "down south" (read: West Virginia, Kentucky, Arkansas, Louisiana, Mississippi, Alabama, Georgia, and for some reason Arizona) are ignorant at best, inbred half-wits at worst. It's everywhere and I try not to notice, unless I get the pleasure of being impressed by its absense.

Dunno. I tried very hard to go in with the "These are good folks, they're here to help you" attitude. I hope I'm right. I sure don't feel right right now. I'm tired and stressed and sick with fear that they're going to turn out to be bureaucrats trying to keep themselves in jobs at best and more "autistics-are-broken-neurotypicals" Nazis at worst. I don't want to put my kid through a bunch of rigmarole just so another bureaucrat can keep his/her job a while longer, and the thought of him learning to see himself as a broken neurotypical...

...it's like somebody twisting the end of a broken bottle in my gut and heart and soul and mind. It makes me sick. Even though I've about come to the conclusion that it was shame and fear and bullying that made me as normal-seeming-on-top as I am and am coming to believe that that's what has to be done to him if we want him to survive out there, it makes me sick, sick, sick, sick, sick.

Teach him to cope??? YES. PLEASE. PLEASE PLEASE PLEASE PLEASE PLEASE. Make him look "normal" at any cost??? I don't want to let anyone do that to my little Buddy. Not to my big Buddy, either. I don't care if he's 5 or 35-- everything I love and value, all the things that make me want to stay alive, rant and rail and rave against that.

I want to scream, "YOU WILL NOT TEACH HIM TO CUT OFF PARTS OF HIMSELF UNTIL HE LOOKS LIKE A ROUND PEG!! !! ! YOU WON'T!! !! I WILL NOT ALLOW IT!! !! !"

But it won't do any good. Nobody would think of themselves as doing that-- even if it was what they were doing, they'd wrap it up in pretty language so they could feel all good about it. They'd just call me crazy.

And it wouldn't do any good even if they would listen-- because, if that's what they're going to do, I don't have any choice but to go along. These are supposed to BE the advocacy people. If they're not with us, I'm all alone. I can't fight this alone.

I know I'm not supposed to think like that, but it's the truth. I don't have the time, the strength, the confidence, any of the things one needs (other than pure stubborn, and that's a trait of this damn disease that I passed on to my son because I didn't see it as a problem at the time 'cause I was 30 and idealistic and chanting "Difference does not equal deficit" like some kind of religious fanatic) to fight people who think they have good intentions by myself.

The closest I could get to that would be to take my kid and walk away...

...and then what??? What do I do then??? Become an isolated homeschooler against the world??? Yeah, THAT'S a good idea (sarcasm).

I'm sorry it is so hard. Based on my experiences: The diagnosis helps you know what your child needs. Yes, the school will emphasize the help that helps them, but if you are lucky they may care enough to put some emphasis on the rest of it too, without too much of a battle. If your child needs help, it gives you a place to start, and it gives you the power to argue with the school about what help your son gets and it puts some constraints on the school in how and what is disciplined. I am not going to tell you that no one will try to use it against you because that might happen. But as long as you are informed you will have the ammo to fight back. It is trite to say but knowledge is power.

As far as your husband goes, it is not uncommon for a spouse to be resistant. I was lucky in that although my husband has a (healthy) suspicious streak for school interference, he was on board with the diagnosis and the enlightenment that it brought. Our son makes sense to us much more now, and honestly, I make more sense to myself. It may take time, but hopefully your husband will see that potential, too.

Did they say how (much) long(er) it would be before you get the results of the evaluation back?

The waiting is the worst part of any diagnosis. Hang in there.

It is very hard not to catastrophize about an issue that is so legitimately serious. We did get help when we got a good, medical diagnosis - real help - and DS is absolutely and resolutely still a square peg. Good things do happen. Sometimes it takes more than one diagnosis to find the people who "get it," but help is out there.

Bombaloo, you're making a claim I do not understand.



I am going to post a previous post that explains why I have difficulty wrapping my mind around what you say.

http://www.wrongplanet.net/postt206352.html

BuyerBeware, good luck with this. Make sure you obtain as much information you can and that you are able to understand the information including the subtext and the context.

I'm trying hard to think of the advice I'd give someone else when I'm in a good place. Trying to dig up the advice I do give someone else when I'm in a good place.

It's very good to know I'm not the only one with a resistant spouse. Maybe that will keep me from losing my cool when he accuses me of stacking the deck (by being forthright with all the info and observations I have) or of diagnosis shopping when/if I think these people have it all wrong.

I think if I profoundly don't agree with these people, I might wait a while and then over the summer pack him down to the child and adolescent people at Allegheny General. I don't relish the thought of driving into the middle of Pittsburgh and entertaining 3 kids in Germantown for hours and hours and hours when it's bloody hot outside...

...but the people in the PHP there did a really good job with me. They're the reason I'm up and typing instead of in the Great Beyond with my mortal remains in an urn somewhere. It's not the same people, but maybe one good program augurs another.

If it comes to that, I could homeschool him. I know I could. I have the patience and the intelligence and the sense of fun and the perseveration, oops I mean perseverance. Good Lord, I don't even have to design a curriculum. I can get one for free from K12, or buy one from any of a dozen or more hs support outfits. We'll be testing out Sing Spell Read Write over the summer-- it looks like fun and I note Michelle Duggar uses it with her kids; while I have some philosophical arguments with the Duggars I've seen them several times IRL and I really admire those happy, curious, rambunctious, kid-like kids. Even a die-hard liberal has to admit she's doing something right.

What I don't think I could do, is do it alone, with nothing but resistance from DH, what's left of my family, his family (it wouldn't be resistance there, it would be outright hostility). Watching 19 Kids and Counting is fun, but I don't think it qualifies for social support.

ASDMommy, I think I'm going to quote you when I have to talk to The Man again tonight. Those are good words-- that's about my reasoning for doing this. "Look, honey-- A Label is what we need to get support and accomodation out of the system. It sucks but that's how it works. Our alternatives are private school, start talking seriously about homeschool, or continue to watch him struggle."

It's confirmation bias. If one is looking for something to happen, one will generally see proof that it is happening even if it really isn't. Very much akin to a self-fulfilling prophecy.

I'm pretty good at reading that stuff-- I've done it before, more than once. What I can't read, is the stuff that people hide in "neutral language" and "positive phrasing." All those pretty words and PC crapola that I rant about. I'm not good at asking the questions that will expose it if it's there-- I'm not dumb, but I want to be polite and it takes me a while to think of quick comebacks.

BuyerBeware, now it makes sense when you explained it to me. I didn't know it was called this but I really make the effort to try to avoid confirmation bias. This is why I am always doubting, 2nd guessing and 3rd guessing. Things aren't so simple. As an aside this is one of my main issues with Fox News.

I don't like the PC crapola either.

My natural tendency is to think of positive and negative attitude in mathematical and logical terms. I will show you what I mean. momsparky showed me how in a thread we had about employers that it is incorrect in the social-emotional sense.

This is how I think.

1. I failed to create a Tic-Tac-Toe game with an artificial intelligent player.

2. I failed at failing to create a Tic-Tac-Toe game with an artificial intelligent player.

I used what is called double negation. Double negation means has the form of non not A which is the same as A.

Therefore, I failed but if I succeeded in creating the game since I failed at failing to create the game. I am a successful failure. NTs don't think like this in any fashion. Where my assumptions were off was using the terms positive and negative in the wrong subtext. I used them in the math subtext instead of the emotional subtext. NTs use these terms in the emotional subtext and I bet if I used them in the mathematics context it comes across to them as being way out in left field.

Confirmation bias is an accurate description of the point I was trying to make. For me personally the concept I was thinking of is the Buddhist concept of karma. If you think negative (in the emotional sense) thoughts and take negative actions, you are more likely to experience negative results. For example, say you are driving to work and someone cuts you off. You get angry and maybe yell at them or call them names even though they cannot hear you. You think about what a jerk that person must be to have done that to you. Your blood pressure rises and you feel upset. Then you get stuck at the next red light and the one after that. The whole time you are getting more and more upset. By the time you get to work you are unsettled to say the least and you get into an argument with a co-worker. You get the idea, the whole day can just kinda go downhill from there. On the other hand, you could have a totally different response to the person who cut you off. Maybe instead of getting angry you think, "that person must not have seen me, I wonder if he or she is having a bad day" and you don't get upset. You may or may not get stuck at the stop lights but even if you do, it doesn't get you upset because you don't have that base level of anger already started from the guy who cut you off. You get to work and you are ready to have a fine day. Long story short, you have a choice about how you respond in most situations and how you choose to respond can set the tone for the situation as it unfolds. In the OP's situation, if she spends a lot of time thinking about how judgmental the social worker is going to be, then she will probably feel judged regardless because she has that idea already planted in her head.

My experience so far in regards to the professionals who have worked with my son has been very positive. I know that is not true for everyone but it is for us. There are many people out there who truly want to do what is best for my son. Not by turning him into a round peg so that he fits with society but giving him the tools he needs to be a square peg and be a successful square peg. Our kids can learn to cope and interact well (enough) with other people, they just need to be explicitly taught things that NT kids mostly pick up without a lot of direct instruction. And our kids often don't learn with conventional teaching methods. New methods need to be employed.