Friday, March 30, 2012

just follow me! already...


Do you not just love anonymous…do you not just love people who comment anonymously…I do…I think it is hilarious when giving an opinion; and that opinion is obviously not of a person that has a child with a “special” ability…I am thankful they read my blog…and I even like that they take the time to comment…what I am not a fan of…the just roll with it approach…the just get over it line of thinking….and the just be thankful your daughter is able to be in the society in which we live…I read every comment…I take every comment and think about them…learn from them…gain understanding and a sense of reassurance…I even find peace in comments…to find others are living like me…that others think like me…that others are and have walked in the shoes I am so desperately trying to slow down…anonymous just needs to sign in…so we can have a conversation…about everything…and as for the doctor comparing my little girl to others…no he does not…not one doctor has compared Maddie…they always tell me Maddie is perfect for Maddie…it is the uneducated that compare my daughter…my daughter will not necessarily need assistance in school…she just may talk like she walked…and she may do math like she manipulates me…I do not know yet what my baby will need or do…that is the frustration of most…only time will tell if she is what the lame folk call a high functioning person with Ds…schools do NOT just provide what my child may need…that is a false hope that many believe that are not a mother of a extra ability child…the school will provide what they deem necessary and prudent to my child…based on the standardized test they will give her…and yes because of her diagnosis money will always be tied to Maddie in her education…punishment…no I love taking tests with strangers that talk down to me…with soft, fake, condescending voices I am sure Maddie wont mind either…she is just a child….right? and a child with Ds….so what will she know! Punishment … Nah…never forget when reading about a mothers journey…we are fickle at times…smiles

7 comments:

  1. Amen!!! I always love it when people who have no idea of what the heck they are saying feel the need to tell me all kinds of stuff in regard to my child with special needs! Thank you, you just said all that I have always wanted too!!

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  2. I have no idea what struggles you will have ahead with Maddie. You do well with what you have today. I can tell you as the mother of 2 very high functioning special needs children that you will have to battle the school system. All I can tell you is to get very familiar with 94-142, as well as any other add on that your state may require. In an IEP meeting go in with the attitude of NO COMPROMISE and choose carefully what you can put back on the table. Then don't expect the school to follow it. Be there reminding them. Call them on the carpet. They will call you confrontational even when you are just standing up for your child. An example of this is that in Mollie's IEP it stated strongly that Mollie would attend gym class dressed out as the other children were. She would be expected to learn the rules and sportsmanship of every game and the physics of being active. She would take the written tests along with the class and that would determine her grade. But she would not be allowed to participate in any game or phys-ed activity that could be considered in any way competitive. It also stated that a graded activity other that described above could be considered competitive. So at the end of the semester the coach decided that Mollie had to participate in the physical challenge portion of the final. He had her run up and down the bleachers 20 times (not the 100 he demanded of the other children) and then make her way through the obsticle course that he had set up. While she was climbing the band tower she fainted and got a huge gash on her head when she fell. In the meeting where I went to tear him a new one he actually said to me "She never was in any real danger. I had the AED ready in case I needed to use it." The principal and the counselor thought I was over reacting when I stood up to scream "What kind of #%^&#$% fool are you? The school board settled with me before I took that one to court. What I asked for was for the coach to sit down with our pediatric nurse educator in the cardiologist's office and discuss LQTS, and Mollie was exempt from any phys-ed class for the rest of her school career. I'm not trying to scare you, but these are the kind of stupid battles that you will have to fight. You may have it easier because they will be able to see Maddie's disability, where as with Mollie the problem is with the resting phase of her heart, well out of anyone's sight. She looks healthy so they assume that she is. One sage piece of advice, If you ever go into a meeting and they ask you sit in a child size chair when they are all in teacher's chairs, walk out on them. Do not negotiate until they are willing to play nice. Also, your husband needs to go to these meetings with you. Two are stronger than one.

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  3. Thats why I put a tracker on my blog! Your comment wasn't too nasty, which is nice, but why hide, and not have a conversation? Thats what makes me crazy! I just got a comment about how I must be the problem because no doctor in two states is good enough for me. You better believe no doctor is good enough for my little man! Of course this person was too chicken to put their name on it! Thats ok, with my tracker, (and a little help from friends,LOL!) I will just block that IP address!

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  4. As far as I know Owen has never had an age comparison done for any area pt, st, OT, intellect. I wonder why therapy here doesn't need to test, maybe it will happen - when he goes to school..? Here preschool is all play based and many kindys are too. Personally I hate the thought of my little bubble being burst by some random so called experts!

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  5. This was great. Since I have so few readers, I have not received any comments I do not know where they come from. That would be annoying. I love your statement about "what the lame folk call a high functioning person with Ds." After having been through another IEP, I have a feeling it will be a long road, even with good intentions coming to the table from our side. Oh, this walk...the IEP part is no fun, really. But, the little girl I so enjoy at home is worth every minute of fighting for her though. She is a blessing some may never understand. And, that my dear blogging friend, is something you completely do.

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  6. I find it funny that anonymous commenters are always the ones with the "best" advice or the strongest opinions and they some how know everything about anything...And yet they will not own what they write. I don't take anyone seriously and do not take what they write to heart if they themselves cannot even sign their name to their ideas and thoughts.

    Love what you wrote here Kim. People who do not have a child with Ds don't have a clue what it is like...

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  7. I don't like the anon comments either. Like you said, if it's important enough to comment on, sign your name!

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