Monday, March 26, 2012

and so it begins...

Maddie is fast approaching her 3rd birthday…with this of course there is party planning…but there is also transition…yes transition -can be good…needed…but obviously it comes with things that are not fun…irritating…changing of therapists…yuck! I am not happy about this…not one bit…but it is what it is…and so we move on…testing…standardized testing…hate those two words…especially when it comes to my Maddie…we are beginning to start testing to see where Maddie is at…REALLY I already know where she is at…and I know where she should be…so lets skip that meeting that tells me all the things I do not want to be reminded of…and then expect me to be thankful and positive…not that I am not thankful…but I am human and it gets to me when someone tells me that Maddie is testing at a 18 month age level and she is 36 months…sigh…and sigh again…when we were discussing dates, times and expectations of her new therapist and beginning preschool…I had a realization…a moment of clarity of sorts…I was talking about how it was Down Syndrome Awareness’s day and we were celebrating…and they did not know about it…WHAT!…it is almost the biggest day of the year and when you advocate for this cause you should know the day! 3/21 is a BIT obvious…(and for those who do not know 3 chromosomes 21st chromosome =Ds) then I was mentioning testing and the lawsuit in WA…they knew nothing! Never heard of it…mind you one of these people is a mother of a child born with Ds…so I assumed she gets it! but no…then I realized that my world that I hold so close to my heart…is not everyone else’s…so for them to see the beauty in Ds comes from only my daughters looks…her attitude…what they feel when they interact with her…but “most” people I do not think want to feel the whole picture of living with a person with Ds…they want the instant stereo type that is projected from Maddie…cute, happy, doll like, quiet, -the perfect child…but this is not Maddie…but it is her in a snippet of time…and that is what standardized IEP testing does…they put a person in a little box…with a pretty bow and call it good…not quite capturing the whole child…or the whole package…so I wonder if I am a no show to the IEP meeting if they will think I am a bad parent that does not care…I am not…I just find it pointless…they asked me a ton of questions about Maddie and asked what my expectations of school were…I told them for her to have a positive educational experience and be school ready…what more can I ask…I am still her parent and her first teacher…Maddie is great because of who we have surrounded her with…little teachers run through my house everyday with her…teaching her life long skills that cannot be taught by an adult…I am going to miss watching her every second of the day…I am going to miss seeing her light bulb moments and having someone maybe -hopefully writing them in a folder for me to share…I am going to miss Maddie when she is at school…I know that it is the best thing for her…I know that it will be great and so will she…but I will still miss her…and I will still wonder what she is up to and if she is good…I feel like I blinked and she is almost 3! WoWsA!

9 comments:

  1. I know how you feel. It went by so fast. I am really nervous about school too but at the same time I think it will be good for Luc.

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  2. Oh man, we're still several months away, but it seems like it will be here in a blink of an eye and it's a little scary! Like you I know it will be good for Sutter because he learns the most from being around Landon but at the same time I like to be there to see it! As far as the testing goes, I'm trying not to even think about that! LOL

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  3. Okay, I cannot stand that box you refer to. I get so what you are saying. Testing is never fun either...a true necessary evil. But, let me say, at the end of the day it will be okay. I think I did not sleep for a whole week before Kristen's testing at this age (and also had a lot of stomach problems if you know what I mean...I know TMI!) It will be okay because you are awesome parents, a great support system, and a beautiful start on an amazing life! Yes, three years goes by way too fast. My girls are eight and almost five!!! :)

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  4. I hear you LOUD and CLEAR. I know one thing for sure Mama Bear will make sure all is well for her Maddie.

    I am not sure what your background is with such things as IEP's and such but it is within your legal rights to have an advocate. Some systems have them for free others do not. You can also invite her current therapists to go with you to the meeting. You do not have to sing ANYTHING until you are completely satisfied. They may need to add new 'boxes' on their forms if you deem it necessary.

    They will want to tie you up quickly in a neat little bow so they can move on about their day. Take the time you need to get all the explanation you need. Happy to answer any questions you may have as they come up.

    Praying for capable caring hands for Maddie!!

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  5. Oh, I despise the testing and evaluating to see what age level my kid functions at! I mean when he is 9 are we still going to test him so they can tell me he functions at a 6yr old level? It's stupid.

    You guys seem to do things a little differently down there...I hear all of you talk about the age 3 and all the IEP's and stuff...We don't do that here. I guess I don't understand why they give your child an IEP at that early of an age? What exactly do they do at age 3 with an IEP? I feel out of the loop, I never know what you guys are talking about! lol

    No matter what Maddie rocks...And she has a personality that is going to kick ass in school, she is going to love it. But I would feel the same way as you...I would miss her tremendously during the day.
    Hope all goes well in the upcoming months preparing her for everything...I cannot believe she is turning three so soon!

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  6. I'm already dreading this transition and we are still 10 months away from Claire starting school! I am going to try to visit a couple of preschools while I am on maternity leave though...

    I also get when you mean about our world not being others world with regards to Ds. I realized that if we don't share the stories of the lawsuit or WDSD, others won't know. Even though it's old news to us, I know that by sharing on our blogs or FB that it really does teach others more about Ds.

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  7. You know how I feel aboit IEP's. I hate them! I feel like I waste so much time. I didnt know her and Arina were so close in age. I cant wait until Arina can go to preschool, because I know she'll have a blast!

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  8. When you see the doctor does he compare her to others in her age group - yes he does! She will require special assistance in school and the funding is dependent on her individual needs and the cost of those therapies. The school system is built around 'yardsticks' - don't fight it and/or deny her. The school provides the tools to 'enhance' her skill levels - it's not a punishment.

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  9. I can't believe Maddie's almost 3 already!! Time is flying by. I hate those age scales. They drive me crazy, and I get this little *twinge* every time someone even mentions them. I don't know if that ever gets easier, although I hear the age comparison so much less now that Sammi's older, because I think they don't test like that much anymore - they don't need to know what age she's functioning at in each skill set. Thank goodness. Ugh. Your girl is beautiful and smart and will do whatever she will do. Keep the expectations high and watch her soar. Maybe I missed something, but I'm not sure what Anonymous is trying to say here...what's not punishment? School? I didn't get the impression that you thought it was... Is it not okay to miss your baby when she goes off to school? Is it not okay to be frustrated by the process? That doesn't mean you're/we're *expecting* to have a miserable experience.

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