Wednesday, March 2, 2011

Determination

Rough day. There's worrisome stuff going on with Big Guy, and (as usual) that seems to attract well-intentioned people who operate in an alternate reality.

There was, for example, the social worker I talked to about how Big Guy's school has documented a sharp increase in self-destructive statements. His comment: "Oh. But I saw him yesterday and he seemed happy!"

Or the nurse who, in response to my concern that Big Guy has been sleeping in school for weeks said, "It's probably just that the teacher didn't bother to wake him up."

Ahem. We're dealing with a child who has chronic dysthymia, a history of periodic Major Depression, and a severe anxiety disorder. I know my child, and I know the symptoms he's had in the past when he's been depressed. I am a sane person, an intelligent woman, and I am well-informed on mental health issues. I am not going to let anyone dismiss Big Guy's shift in behavior with "he's probably just doesn't want to be in school". I don't care if I get labeled a pushy mama. I don't care what excuse people want to serve up. I don't care if they don't like me, because this is my child and he needs help. And I'm going to get it.

I will try to be gracious and respectful. I will warn people when I'm getting annoyed. I will correct them when it's clear they are making false assumptions or don't have their facts straight. I will pray for those who aggravate me. (I will get my child the help he needs.)

I will vent privately to my shell-shocked husband (who always looks at me when I'm like this as if he's not sure I'm the lady he married). I will pray some more, this time for guidance. I will take many deep, cleansing breaths. I will think and think and think. (I will get my child the help he needs.)

And when I wonder how the world can possibly be filled with so many [adjective,adjective, adjective] people who completely don't get what I'm talking about, I will force myself to wonder why so many of my days are nonetheless filled with helpful, kind, thoughtful friends. Because part of the reason I can focus on getting my child the help he needs is that there are so incredibly many good people in this world who encourage me and give me strength. 

Couldn't do it without you.


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17 comments:

  1. Can you even imagine the possiblity that other people may have insight? You are an expert on knowing your child but reading up on mental illness does not make you an expert. There is a reason doctors do not treat family. You are too emeshed to be objective. Allow help in.

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  2. I appreciate your thoughts, but we have been through seven years of treatment for Big Guy, so it's not just a matter of having 'read up' on mental illness. We've lived with it, and with its patterns. And the people at Big Guy's therapeutic school (who have known him for a long time, and are trained clinicians) agree that he is showing alarming signs of clinical depression. They are the ones who are raising the alarm. The people I spoke to today -- the ones who dismissed the concrete evidence, including logs of symptoms -- are people who have known Big Guy for six months, and have no benchmark against which to measure where he is now. They were not open to input, even from professionals.

    Hope that clarifies things a bit.

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  3. Go. Go. Go Julia! I love the laser focus on what is the most important thing. Fierce prayers for that goal.
    xo

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  4. Our family can relate to what you are saying. My 15 year old granddaughter has similar issues. Every time a new agency/professional comes on the scene they assume that the problem stems from poor parenting/problems in the home. My daughter, her mother, has to put up with this each time and has to work through the process to try to get the help my granddaughter needs. It is a frustrating process. And a scary one - when it is obvious to the family that the meds are wrong but getting the professionals convinced is tough. Thank you for your blog - it has served as an encouragement for our family.

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  5. Wow. I'm in the middle of just a run-of-the-mill roller-coaster week. This sure puts things in perspective.

    You're intelligent and sane indeed, and most gracious to Anonymous, and One Tough Dame (which I mean in the very most complimentary way!) and my thoughts and hopes and best wishes are with you. Hope it gets better -- soon.

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  6. @Grammy,
    Yes, it's frustrating. It's equally hard when people assume that the child isn't trying hard enough, and that it's mainly a matter of choosing not to exercise self-control.

    A child who can hold it together in one situation isn't necessarily going to be able to hold it together in every situation. And when a child can manage some things sometimes (but not others), it's worth considering whether that's an attitude or effort problem OR if it means he lacks the coping skills or emotional reserves to manage his feelings consistently. Attitude problems require discipline; coping skills deficits require therapeutic intervention.

    How you define the problem makes a huge difference in the steps you take to solve it.

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  7. Oh my God Julia this kind of thing drives me INSANE. The comments by the social workers are not just unwilling, they alert me to someone who is not up to their job. The teachers just didn't wake him UP? Argh. I'm not helping, sorry :) You keep your head up and keep fighting for your child. You are AWESOME. The constant re-explaining history and symptoms of any disease, mental or physical, is to me, the most flawed part of our systems.

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  8. @Maggie May,
    Sigh. In this case the social worker is a fine human being, but his experience is on the administrative rather than the therapeutic end. He does tend to assume almost everything is a matter of willfulness, maybe because he hasn't worked with many kids like Big Guy before. (The nurse, well, the less said the better!) But yeah, it takes way more work to even communicate than it ought to. Way, way more.

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  9. Praise God that Big Guy has you. Not all parents would do what you do. Maybe that's what the nurse and social worker are used to? But it's not an excuse for them. You have my sincere prayers for all of your family.

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  10. I've always told my kids that I am their greatest defender and most staunch cheerleader. You, however, do not need to say that ~ you are living it! Go Julia!!!! Our prayers are with you and your family!

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  11. You go, mama, and stay the course! Our people with disabilities (various) all need and *must have* at least one advocate! Someone needs to see that all the people involved in the system try to get on the same page. I'll say it again, having an advocate is essential! No one knows better than you what your child needs. Period.

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  12. As a fellow mama and retired Spe. Ed. teacher I can tell you do not stop fighting for him. My youngest son had a learning disability and was ADHD. These are not nearly as extreme as Big Guy and yet I don't know how he would have finished high school and college without me being his biggest cheerleader and strongest advocate. You keep on doing what you are doing Julia. My prayers are with you.

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  13. Love to you. Call if you need to vent or something.

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  14. Sent by Magpie--thank goodness you're not listening to anonymous #1. I wish you the best.

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  15. Praying for you, Big Guy, and your family. A mother's heart knows more than anyone except our heavenly father what their child needs. Take Care - Mizz Bee

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  16. I worked for over 17 years in a non profit that promoted mental health education and support for families. I empathize with your heartache and frustration. Don't give up. The mental health system sucks the life out of you sometimes. Know that there are many out here who understand and support you. Never give up the fight to get your beloved child the help he needs and deserves. Sending a hug and strength for the battle.

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  17. You MUST follow your instincts here. If you are wrong and he gets more help than some believe he needs, so what. IF he doesn't get that help, the alternative is too painful to believe.
    I am a friend of Magpie's from HS. A couple who went to college with me lost a son this year to this terrible disease of depression.
    Don't let anyone talk you out of your feelings about this. And hang in there. Things can get better. We will pray for you and Big Guy.

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