20 December 2010

Nothing is Wrong.

"I'm not disabled! There's nothing wrong with me! I hate when you say that, and make things up about me!"

Well, a certain teen doesn't agree with the diagnosis of a renowned children's hospital developmental team, and that's fine. Or the diagnoses (identical) given by several other professionals from other organizations. And the fact that the Regional Center actually got around to FUNDING said teen doesn't mean anything when Elf has been on the list for years with zero help.

And the unnamed teen doesn't care that the (also unnamed) semigovernmental department, that sends a worker out for eight hours a week in our home, seems to agree that he is disabled and needs help. (That's fun, having someone in your home all the time telling you how to parent. The alternative? We could lose all our children if things go wrong and someone gets hurt after a blowup. Yay.)

Oh! Oh! Or the ENTIRE STATE of Missouri. They have consented to fund this particular teen for the Sara Lopez waiver, which basically gives Medicaid services to *just* 200 minors in the state who don't quite qualify for Medicaid financially, but who have needs SO SEVERE that they're concerned the child would be institutionalized otherwise. In this time of cutbacks, please don't think they hand out services to people who don't meet income guidelines *just* because they look pretty like me, ok? :)

So yeah. I enjoy making all this stuff up about his being disabled. I must have that Munchausen by proxy syndrome thing because it's just sooo much fun going to all appointments. Look at how glamourous I am as I enter the center for another session where my parenting is questioned and micromanaged! While I bring all the other children and they get to hear this crap because I have no sitter! The clients are always innnteresting there. But I'm walking the carpet! Snap a photo! Striking a pose -

* Vogue, Vogue *

Ha ha! Ok, y'all just WISH you were me. I'm a star, I tellya. No wonder the teen thinks I'm making it all up! I get sooo much validation and luv from everyone I have to work with on his imaginary problems. It brings joy to my life and gives me purpose. I had nothing else to do. I also think working with the public school is sexxxy and IEPs are hott. Just so you know.

Though our case manager from the Regional Center tells me that all teens are "not disabled." They are all like that. It's disappointing, though, because I thought I had trained my children to accept themselves for who they are while working TOWARD being functional in certain areas. It makes me sad, for instance, to hear Elf pray that he would just be "normal."

And yet... I cannot say I want to take his valid feelings away from him. I look at his going to school next year and think, know what? He can't even cross the street. He can't be left alone in a Sunday School class. He can't follow simple directions in a crowd; it's just all over once he walks away from his siblings or Mom. I'm worried. Maybe he is praying for "normal" because he is worried, too.

So... do you tell your child he's disabled? I don't mean in a constant, belittling way. I mean... do they know what their diagnoses are? And does your kid believe it? Are you the bad guy for mentioning it? Leave a comment here and I'll read it before my next photoshoot.

25 comments:

  1. Mrs. C, my dad just blogged about Temple Grandin and links to a TED talk of hers.

    I'm certainly not an expert after watching her movie and listening to her talk, but I kept thinking of you while watching the movie.

    My opinion--based on knowing next to nothing, so take this with as much salt as you need to make up for my ignorance--if "disabled" isn't a helpful label, you don't need it. Dr. Grandin talks about different types of thinkers. Perhaps she, with experience and background, has some terminology that would be more helpful.

    Hang in there! I wish I had some insights to offer, some support to give, but perhaps you'll find some comfort/encouragement in what Dr. Grandin has to share. Perhaps not.

    Wishing I had more to offer,
    ~Luke

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  2. Recently Musings of A Christian Psychologist posted a list of questions that included the question, "How can I encourage my client to accept/respect their body (and its limits)–right now?."

    I don't know the answer to that. My daughter lost it when I used the word disabled, differently abled, whatever. But, I did continue to tell her that because of prenatal exposure to alcohol she was impulsive and had poor judgment. I told her she would need help to plan, consider consequences and make choices. She needed her time structured so that there was less of an opportunity to be in situations where she would be vulnerable. She needed to select her peer group carefully.

    You know our outcome.

    But, could I have lived with treating her as if she had no deficits? I don't think I could have. What I could do, I did. I tied her consequences to her choices. I set limits that were appropriate for her abilities. I was rewarded with rages, professionals who questioned my parenting ability, sleepless nights... and an adult daughter who is in jail.

    I just watched Temple Grandin's movie too... fascinating.

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  3. I've never seen Temple Grandin's movie, but I'm an Aspie, married to an Aspie and parent to two Aspies. We've been up front with our kids from the start about their diagnoses. And, yes, my son (almost 11) believes it. I'm not usually the bad guy. At least not for this. I don't know if it makes a difference that we've never used the word disabled. It's certainly not a conscious thing. We've just never thought of ourselves that way. We do use the term special needs a lot. I'm afraid I'm not much help here.

    Sorry, no answers here either. Good luck.

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  4. Luke and Larua - you're right... "disabled" has a pretty bad connotation and I can see where most people would want to avoid it.

    Though in our particular circumstance, unnamed teen's goings-on are way beyond the "differently abled" label. And more than just autism going on here, but I'm not blogging that part for the present moment, though reading between the lines you could figure a fair bit out.

    Though it could also be that maybe my attitude toward the word is more because I see zero funding unless the magical word "disabled" is used in paperwork. Somehow nobody wants to fund people who say everything is just fine and they are differently abled. :)

    Maybe I could use more language about "difference," but the problem being that this person doesn't get language nuances and then he mightn't understand what I'm referring to at all. Hm. Will try it though and see what happens when situation warrants next time. He might understand it, accept it and all that in time. He really needs to.

    By the way, let me mention THANKS for commenting, larua! I never know who's reading until they say HI. :)

    J, sometimes I wonder about the "differences" in our children might include the very lack of acceptance of said difference. They don't see their behaviour as a problem?

    And... I get you on the parenting thing. Soon we will have some dude in our house for 40 hours a week. He's a mandated reporter. Paid for by the state. But do I want help with this child? Medicaid coverage through this waiver REQUIRES it. It's called a PCA. And he racked up over $188,300 in medical bills last year. I don't wanna pay that this year... so... sigh.

    The whole family goes through lack of privacy, micromanagement and unfair scrutiny. It feels like it never ends. Because now when kids are in trouble, they go to the outside person to gripe about how unfair it is and person gets all involved. Arrg. :(

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  5. You're going to have someone in the house for 40 hours a week?!?! Where will you put them (now I'm not kidding, here) so that you have a home life? Seriously, what are they going to do, eat meals with you? Cart along to the post office, and hang out on family jaunts to the museum?

    We didn't know what to tell Sydney (yep...that's the girly's name) when she was being tested. We didn't want her to feel bad or ostracized, and yet she needed to know why she was being evaluated and what for.

    We had chosen to use the word 'enabled' and we kept saying that we were all equipped with different skills and talents, and that she is enabled with different ones that some others and that's what makes the world go around. This was going along swimmingly, until one of the 'experts' said right in front of Sydney that SPD is brain damage from birth, and another commenting that Aspergers is an abnormality. Sydney is not stupid. She took a lot of the comments very personally, and to heart. She asked me if people would know there was something wrong by looking at her. I blogged about it at the time...and since them we continue to use the word enabled. She is very capable in many areas, some highly capable....more so than some adults! And then there are areas that she stumbles in, and hey, we all have quirks, some of hers are very noticeable.This made me think, not everyone who comes in contact with her will realize that she's not being a brat when she panics over something ridiculous and makes a scene. To her it's unbearable and frightening and she cannot help it. So we empowered her. She does know what she 'has', and that some people might be intimidated by her diagnosis out of ignorance. But she knows that there will be times where she may need to explain to friends, family, that there is 'something' just in case they see her become obstinant, or overwhelmed. It's not to excuse her behavior, but to empower her so that if they see something that frightens or worries them she isn't embarrased or having to make excuses. It's on the table and they need to deal with it, because she already has!

    Teens are different though. They are self conscious in a different way, and take things differently. Do what you know how to do best...use your Mom instincts and follow your heart.

    I don't know all of the 'in's and out's' of your situation, but another reason we told Sydney was because of her relying on medication at this point to control tics. If she stays with anyone for a length of time during the day, she needs to be given her meds. We had hoped to avoid them, but it just wasn't happening, she needs them to function. She needs to be confident and comfortable with another person knowing what she takes, how much, and what for if there is ever an emergency while she is in their care. We don't want there to be any shame or guilt when it comes to her meds, so again, we empowered her by saying that her tics are a noticeable distraction and hopefully with God's good help she will outgrow them. If she doesn't then that's okay, since God made her just the way he wants her, but we can make them less distracting to her and others with meds.

    I agree that there is a negative bag of crap attached to the word 'disabled'...but you can choose an alternative word that represents it for your son, and let him know that other folks don't realize that. It only has stigma if you keep the stigma as far as I'm concerned.

    I have blathered on long enough. Sorry! :)

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  6. Yes, Blondee, 40 hours a week during vacations, 10-15 on school weeks. Basically most waking hours. Living in a fishbowl to the extreme. I hope I like the fella they hire. I did ask for a man, sexist that I am, because 1. my child is a LARGE PERSON, and 2. half the time he removes all his clothing but his underwear. Aaand I'm not comfy with some lady seeing that.


    What you've described is closer to how we treat Elf. Milder difficulties that can be VERY MAJOR in the wrong setting. But reasonably manageable. I have no problem with autism, the sensory processing thing and all that... but throw in some of this other stuff we're dealing with and "hell on earth" doesn't begin to describe it. Hard to describe the effect it has on everyone... their interactions with one another...

    Then sometimes I think the "negative bag of crap" attached to the word "disabled" has to do with OUR OWN thinking "less" of people with difficulties. Notice how parents affirm their kids for being smart or pretty... no one thinks of "disabled" people as being smart or pretty.

    Ahh well. BTW, Sydney is a pretty name. And a pretty city. I used to live in the suburb of Pymble, NSW you know. :)

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  7. I worry about this too, Mrs. C. Can you tell me when you first talked to your boys about it? How you did it?

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  8. Virginia, I try to be matter-of-fact as possible. And I tell Elf that he has a cute stim, because he does. :)

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  9. Happy Elf Mom, I have no useful advice to offer, but I wish you resolution and peace.

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  10. Dearest Mrs C. I wish I could offer you some comfort or help. You are in my thoughts, and I will be interested to see how The New Dude fits in with the Happy Elf Household.

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  11. Thank you, FedUpMom and Deb. Supportive comments are *always* appreciated, even if they offer no constructive advice.

    Hey, sometimes the advice-free comments are the best, as any parent who has gone to a grocery store with his/her children will attest. :)

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  12. Hey, you've got my son living with you, haven't you??
    Mine isn't too happy about being reminded of his limitations - and I only remind him cos the airy-fairy schemes and ideas he plans are fabulous but impractical for him as he has these limiting anxieties/behaviours/quirks.
    And then I'm the big bad b for telling porkies about what he can or can't do *rolls eyes*.
    We're singing from the same song sheet, sista, Amen!

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  13. Ha! Airy-fairy schemes are *fun*. I didn't get into those this post but I do have me some whoppers as well.

    :)

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  14. As someone who has never been there and doesn't really have a right to have an opinion at all in this case, I don't think I'd tell my kids. I'm just one of those people who never want to speak anything negative over them so they won't own it.

    BUT, again, I have never been there. So......you can just dismiss my entire comment! :-)

    I just hadn't left a comment on your blog in a while and I missed ya! :-)

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  15. Oh boy...I don't know if Christopher "gets" his differences, or if he ever will. We will be up front about his diagonosis as he is able to process it. I am just not sure when/if that will ever be....Plus, our issues are a bit different with the DS.

    I don't think there is a way to make your kids feel OK with their differences without addressing them. I hope that makes sense...Maybe it is the perceived negative connotation around the word disabled, but there in lies the rub, huh? I think we do a dis service to our kids by trying to deal with their "disability" or "super powers" without making them aware of themselves. But in your case, it seems to be a PART of the disability.....kind of like running on one of those gerbil wheels. :(

    NOw, as far as having somebody in your home...we have the flip-side medical version of that waiver. We have a nurse in our home 60 hours per week whether we want it or not. Frankly, it has taken me 4 years to get one we trust and to get some sleep while they are here (we chose the time of the nursing hours to help me get some rest - lol).

    Correct me if I am wrong, but this person is coming into your home to deal with ONE child and you & your husband (I understand the impact on the others though). So from the get-go, I would sit with this person and lay down some ground rules about coming into your home and the impact on your other children, like: smoking, taking your shoes off, hours they are there, what happens if they are ill, meal times, routines, any religious observances, etc. These all sound like small things, but need to be addressed or you will lose all control in your own home. the other thing is that your make it clear WHO they are there for. They may offer advice in dealing with your other children - it is up to you to implement that or not. If he is the only one covered by the waiver, HE is the only one they should have impact on day to day living and interactions. If that is NOT the case, then ALL of the others should be on the waiver as well - it is an all or nothing prospect.

    I do hope that this person will be respectful of your family, and really HELP with the issues going one. I hope that you are really surprised and that this person can become an allie an deven an extended part of your family. That is a learning process for EVERYBODY, and I pray that whom ever comes in is flexible enough and conscious of where their boundaries are.

    It sucks having somebody in your home like that, but we do this stuff for our kids.

    Sending you guys LOTS of prayers & hugs. Let me know if you want a copy of our "house rules" for ideas. :)

    Thanks so much for the birthday wishes for Christopher! Sorry this is so long....

    Steph

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  16. Daja, you have EVERY right to an opinion on this. Bear in mind it just might change if you went through something similar. :)

    I do see where you are coming from. There are several other smaller things, like my daughter having weakness on her left side of her body and my son Emperor having extreme weakness on the right (he crawled like a polio victim!) that I don't really bring up. I've had it looked at, and there isn't much aside from therapy I can't afford to fix it, so there ya go. Not even really mentioned.

    But the unnamed teen has been in and out of the hospital and is illiterate. If he were to OWN it, then he could properly pray AGAINST it and/or make allowances for his difficulties by not getting into certain situations.

    Stephanie, part of the problem with mental illness is that it is perceived to be the parents' fault. Attitudes are improving out there as to the biochemical nature of things and etc. but even medical professionals want your family rules to reflect their standard of what living ought to be.

    And someone has been so violent, and our upheaval so great, that we can no longer refuse help. It's so depressing I can't even put it to words. No one really believes you are a good parent if your kid has emotional difficulty like that. So, I'm left with things being all my fault when I need support the most.

    I don't know how to get that control back over my family because things are so out of control, and all these people must be involved. I don't even know what the house rules are anymore because they keep getting over-ridden and/or someone is out of control and things I never thought I'd do, I find I must for the safety of others.

    I need to really think about your comment because there ought to be a line of respect there somewhere, but I'm feeling like I've been so trampled that it's not there anymore.

    I'm grateful we'll get some help, but living in a fishbowl is not easy.

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  17. Pamela knows she has autism but I'm not sure if she fully understands what it means. We have no idea why, but Pamela has an innate sense that she is not ready to be out in the world. She still likes having her "babies" (shh . . . D-O-L-L) and watching Big Comfy Couch as well as listening to her iTunes and watching The Simpsons and Ferris Bueller's Day Off. We have never used the word disabled or diffabled, but, like Elf, her issues are manageable without help from the outside world. She's not violent and she can regulate her emotions. We have traveled with her overseas and she manages very well with that sort of change. Even though she tries to boss us all around, she is not the Borg and we do not assimilate to her will.

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  18. I have a problem assimilating to a compliant child's wishes. I can admit that. Sigh. :)

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  19. I actually was grew up in a house with an older sister who had a home health aide in our home 40 hours a week. (During my teen years at least). Some of them were wonderful, taking care of the entire family and even starting dinner because mom and Dad were at work and the kids (except my sis) were at school. Others, ... abused my sister. One was not feeding her and eating her food instead.

    My suggestion is that once you are comfortable that you have a good person, use the extra help and lightened load to relax a little and go out with hubby and/or the other kids.

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  20. This person I think is specific to the child, and services probably can't be used for other family members. Though THAT would make more sense because the problems affect the whole family...

    I cannot imagine how your family figured out the abuse or how this person was dealt with. From other people who have been there (other situations) you go through a time where you think you are a little nuts for even thinking it. Then... something happens and you know. I hope your sister is ok now and has good care. Big worry as parents age; it is for me and my children are still younger. :(

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  21. I'm not a parent, and I hate using buzzwords like "empowered."

    Every single one of us has needs. Some of us have additional and/or unusual needs. And those additional or unusual needs can, frankly, suck. It's not fair. But life is not about being the best in a fair world. It is about doing what we can, where we are. And that *doing* requires that we have some understanding of our needs, our abilities, and our limitations. God made us - all of us - in His image, which is the most mind-blowing thing in the world to me.

    I often run with a friend with severe asthma and a lung disease. If she fails to take responsibility for her special respiratory needs by attempting to keep pace with runners without these needs, the result is usually a months-long problem that renders her unable to climb stairs. Fair? No. Sucks? Yes. But I admire how well she *balances* her special needs with her exercise. She sticks to a schedule of medications, monitors her breathing, and - this is key - has developed enough self-awareness to know what she can and cannot do. A truly self-aware person has more guts, brawn, cojones, whatever than the most decorated combat veteran.

    That's how I would approach any type of limitation: an extra level of responsibility that *is* within reach.

    I'm sure you've been there and that this is nothing new :)

    The worst part about cognitive, emotional, or psychiatric special needs is that the condition itself can impede or obstruct recognition of a special need. I just don't know what to do there. It is heartbreaking when someone who desperately needs help simply refuses that help because he does not believe he needs it. Prayers for you and your family :)

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  22. Every single one of us has needs. Some of us have additional and/or unusual needs. And those additional or unusual needs can, frankly, suck. It's not fair. But life is not about being the best in a fair world. It is about doing what we can, where we are. And that *doing* requires that we have some understanding of our needs, our abilities, and our limitations. God made us - all of us - in His image, which is the most mind-blowing thing in the world to me.

    I often run with a friend with severe asthma and a lung disease. If she fails to take responsibility for her special respiratory needs by attempting to keep pace with runners without these needs, the result is usually a months-long problem that renders her unable to climb stairs. Fair? No. Sucks? Yes. But I admire how well she *balances* her special needs with her exercise. She sticks to a schedule of medications, monitors her breathing, and - this is key - has developed enough self-awareness to know what she can and cannot do. A truly self-aware person has more guts, brawn, cojones, whatever than the most decorated combat veteran.

    That's how I would approach any type of limitation: an extra level of responsibility that *is* within reach.

    I'm sure you've been there and that this is nothing new :)

    The worst part about cognitive, emotional, or psychiatric special needs is that the condition itself can impede or obstruct recognition of a special need. I just don't know what to do there. It is heartbreaking when someone who desperately needs help simply refuses that help because he does not believe he needs it. Prayers for you and your family :)

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  23. Allison, that's a great analogy/example! Elf used to have terrible asthma, you know... unfortunately a subject I know a fair bit about. But yep, the child I'm discussing doesn't really get that he is disabled. :(

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  24. It took a while to realize there was a problem, but with 8 siblings and 2 parents, we knew we weren't ALL crazy. We all felt uneasy and noticed she was losing weight. Finally after several of us asking her questions she told what was happening.

    She passed away many years ago, as she had many health issues, but my time with her has made me a better person.

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  25. I'm so sorry she's gone... and yes, you are a very good person. Your heart of compassion for others shines through your posts. Now I know your sister has helped make you the wonderful woman you are! :)

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Non-troll comments always welcome! :)