Things I wish I had known when Monkey was diagnosed.

Every once in a while I’ll skim through some of my older posts and find myself shaking my head over some of what I wrote. Perhaps it’s just wishful thinking but it seems to me that there was an awful lot of hysteria and near hysteria back in those early days that I just don’t feel any more. It started me thinking, what do I know now that I wish I had known as a newly diagnosed parent?

  1. There is no magic therapy/medication/supplement that will fix this and he will only be little once. Don’t lose those moments to fruitless searches.
  2. This is not my fault. Yes, they are my genes but I DID NOT KNOW and I deserve a little slack.
  3. There are going to be stupid people who say stupid things, who do stupid things, don’t let them ruin your day.
  4. There are going to be mean people who say mean things, who do mean things, don’t take it. Stand up for yourself, for your child.
  5. If it is working, you are doing it right. Forget the book, forget what your neighbor’s sister’s cousin thinks…you are doing it right.
  6. A day, a week, a month…it’s not a long time. It will be over in a heartbeat.
  7. You will be OK too, someday.1

I know there are a ton more. Are there things that you know now that you wish you had known then?

  1. I had to edit to add this because it is really true. You have to learn all of this in your own time but keep it in mind when you are feeling helpless or hopeless. []

22 thoughts on “Things I wish I had known when Monkey was diagnosed.

  • August 14, 2012 at 11:08 am
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    Drugs are wonderful. So are supplements. Don’t be afraid of them, they just might be what you and/or your child really needs.

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    • August 14, 2012 at 11:12 am
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      I cannot argue there, Bonnie, as demonstrated by my abject fear of giving up Celexa!

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    • March 24, 2017 at 7:32 am
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      Reply
  • August 14, 2012 at 11:32 am
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    oh, Melissa Welin, so great. i’m still working on most of this, as you well know, but so glad to have help with it all 🙂

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  • August 14, 2012 at 11:38 am
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    Leah, I don’t want this to sound condescending in any way but I think you are doing amazing! It’s all a work in progress for most of us 🙂

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  • August 14, 2012 at 12:44 pm
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    I think one of the hardest things I had to learn to overcome was sitting in the IEP’s and hearing his present level of performance and hearing what he “wasn’t” doing and what “age appropriate” tasks he should be accomplishing. I would sit there with tears in my eyes and barely able to even speak(yes…me barely able to speak). Then I decided to make a switch and informed the staff that we would be talking about his present level of performance with a positive tone, only talking about what he was doing and what he accomplished. It changed the whole tone of the IEP and didn’t leave me in tears! It was a challenge for the staff at first, but has made all the difference! If only someone had suggested that to me years ago…..

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    • August 14, 2012 at 3:05 pm
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      Oh, I *love* this! This is hands down the most awful part of any evaluation…the list of ways in which he doesn’t stack up. Very nice solution!

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    • August 14, 2012 at 3:06 pm
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      Thanks, Missy!

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    • August 14, 2012 at 3:05 pm
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      Thank you 🙂

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  • August 14, 2012 at 2:34 pm
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    You will have bad days, but the good days more than make up for them. Well written, as always, Melissa!

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    • August 14, 2012 at 3:06 pm
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      Thanks Rachel…and the good days get more and more frequent too!

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  • August 14, 2012 at 5:29 pm
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    Don’t trade a single moment of any and all of your children’s lives whether they are diagnosed with or without. Each child brings us all closer together esp within all of these FX families. Keep up the good work as these children and adults will profit by it all.

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  • August 14, 2012 at 10:04 pm
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    I think that the first should be emphasized to ALL parents–Don’t try to push your kids to be more than they are when they are little. Just let them be little. Fantastic writing as usual, Melissa.

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