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Some Days

Some days are just hard.

My oldest was diagnosed in the Asperger's spectrum when she was 5 years old. I wasn't surprised. I knew that there was a disconnect somewhere but what ever I read about Autism was a step too far from what I was experiencing with her.

Everyday is a lesson. Everyday we try to remember the tools that we've been given to guide her toward good choices. Her first reaction to things always seems to be 'anger'. That emotion is so far removed from the rest of us in this house that it can make some days incredibly, incredibly hard.

It's a roller-coaster.

Thank goodness my youngest was born with an easy going disposition. (I think this angers her big sister even more!)

There are some great days. Some really great days. Those days give me hope because then I know I'm seeing the real Katie. And she feels it too. And she wants to feel good. Our job is to remember how we got to this "feel good" place and do these things over and over again. Did we feed her something different? Did she get more sleep than usual? Less sleep? Did we cut back on video games? Did we give more one-on-one time?

There was a time when we had a chart for all these things, and more. But, trying to live your life by a check-off chart isn't easy. And daily living just gets in the way. "We didn't check off yesterday. What did you eat yesterday morning?".

School will be out for summer very soon. Transitions aren't easy. I'm planning activities and hope that this summer is the summer that we finally get her on a positive path. For her sake, and ours.

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24 comments:

  1. Wow. I haven't been reading your blog long but I had no clue. Thank you so much for sharing something that I know can't be easy living--much less writing about.

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  2. I'm sorry to hear that Ann. It must be really tough. But it sounds like you're doing a wonderful job, so keep up the good work and I'm sure things will get better.

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  3. I can only imagine how hard that is, I find it hard enough to raise my toddler who has no such diagnosis. I hope the transition from school to summer days spent at home will be as easy as possible and that somehow, through that checklist, you'll be able to figure out just the right recipe for happier days for Katie.

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  4. Thank you for sharing your story with us. I've worked with Asperger's kids in the past and, while it can be frustrating, is rewarding when you see that they have made gains. Every little achievement is worth a big celebration. Many hugs to you, my friend.

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  5. you are wise to be preparing for summer. my daughter always struggles with change, keeping her busy seems to help... most days. have a good afternoon

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  6. Ebb and Flow and Ebb and Flow.

    Nice post.

    Ann

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  7. I am glad I stumbled across your blog from the entre card. I read you blog and I thought am I reading something similar that i have blogged. My son is 7 and has High Functioning Autism. We have our good days and bad. I totally am familiar with transitions not going easy. What helps me cope is my blog. If you ever want to stop by and read some of the thing I have written about my son please do. I am going to add your blog to my blog roll so I remember to come back and read! Thanks for sharing your story.

    http://supermommytotherescue.com

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  8. I feel your pain. My middle is ADHD and also has a major disconnect. We have some really great days and then, well, there are really bad ones. She irritates us all to no end sometimes and I also am thankful to have a great 3rd child.. he has a great easygoing disposition. But it is a struggle. Thanks for speaking out!

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  9. Sending positive thoughts for that positive path. Thanks for this post:)

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  10. Hi Ann,

    Check your mailbox later, I'm going to send you something. ((HUGS)).

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  11. 2 of my friends have children on the Asperger's spectrum. A challenge for sure. But this I know...you were never given more than you can handle. You will grow more as a person and Mom than most of us will. Thank you for sharing this today.

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  12. Ann,
    I found you from the Mom Bloggers Club. My husband and I are both in Special Education and host a podcast for children called Night Light Stories http://www.nightlightstories.blogspot.com. I love your honesty! I look forward to visiting your blog often.

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  13. Hang in there. I'll be praying for a smooth transition.

    (BIG HUG)

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  14. I can only imagine... I have a freind whos daughter has this and they have struggles... now that she is 13, it has actually gotten a little better... I will keep you in my prayers...

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  15. I hope the summer goes very well and is indeed a good break for you all.

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  16. Aw, the poor girls. Is there any kind of medication she can take to stabilize her moods? I know that no one likes to medicate their kid, but sometimes it turns out to be the best thing for everyone.

    Justine :o )

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  17. We tried living by charts, reward systems and more when my oldest was misbehaving in school. You are right- it's like another job!

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  18. YOU ARE AWESOME!! I love your blog, and your attitude! You are so right to just take everything day by day- sometimes thats what God has intended for us to do in the first place....

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  19. Wow. I've been reading your blog for a while and had no clue - I can't even begin to imagine what it's like to get through the day-to-day things...thanks so much for sharing your story. Keeping you in my thoughts and prayers!

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  20. My 10-y-o has special needs as well. Nonverbal learning disorder. He gets angry and frustrated SO easily. He knows he should be able to do things faster, and gets angry when he can't. I found a sport that he enjoys and that helps him to find his balance. I hope you, with the help of your IEP team at school when she is old enough, can help her find her way. He also takes socialization training through the speech therapist at school. Kids with aspergers need that and the early intervention can work wonders. There is a group near me called TASK. Team of Advocates for Special Kids. They give seminars on how to be a super advocate for your kid. To prepare and be able to face down a 7-person panel of the school administration, and insist (politely) on the services that your child needs. Sorry, maybe you already know this stuff, but it has been an invaluable help to me.

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  21. One of my best friends son has this as well. She has her ups and downs. I try to help out as best I can, but really, as an outsider I'm sure I have no idea how the reality of it. Just know you're not alone, and that other care, :)

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  22. I did not know you had a child with autism. I have several friends who are dealing with autism (although to different degrees) and one of them is Nancy Alspaugh Jackson who is the executive director of ACT Today. That's the organization that I ran for (Wyatt's Run is named for Nancy's son Wyatt who has autism).

    I am learning more about autism and am amazed at how many people are effected. There are a lot of different therapies (as I'm sure you know) and they are often cost prohibitive (as I'm sure you also know). ACT Today provides grants to families in need so that they can better help their children who have autism.

    You may be familiar with this book already...The Horse Boy by Rupert Isaacson. There is also a documentary with the same title. Here's a link if you'd like to check it out. I read an article in a magazine about it--that's how I first learned of it.

    http://www.horseboymovie.com/story.php

    I wish you much luck for the summer. You are a loving mother--that's for sure! Stay strong and take it one day at a time (that's what my friend Nancy tells me that does and she has some really difficult days also).

    Susan

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  23. It sounds like you're doing a beautiful job as a mama. The chart thing reminds me of the newborn days... just yesterday I found the calendar where I charted the kidlet's day in detail in her first 6 months. It made me very tired just reading it! I can't imagine needing to keep it up for years to find the right combination for ensuring better days.

    I hope summer brings all sorts of answers and good times to your entire family! ((HUGS))

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  24. Some days are just hard. Period. Glad to have you met you, Ann! :)

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