Sometimes I feel like I am out on an island…not a sunny white sanded island…a island where it is full of trees all looking the same and nowhere to go or get out…on this 3 year journey of being Maddie’s mom the same things happen over and over again…and then I just get tired and annoyed with them…examples and what set this tirade to its tipping point…people writing the “r” word on facebook; standing in line at Bountiful Basket and hearing the volunteer use the term mentally disable and of course the upcoming IEP…since I have moved on from the initial shock of having extra chromosome loves…I have moved to the shock of ignorant people…when I hear or read someone use the “r” word….or a person who works with people with extra needs- say and use the phrase mentally disable…I do not like that phrase…it just makes me cringe…it makes me think… is that how someone would describe my Maddie…insert “r” word, “mr” word…or mentally disable…I would describe Maddie as mentally able and sufficient to contribute to society…or better yet not even refer to her brains but who she is a person…and then there is the fast approaching IEP meeting…that is a waste of my nerves….today Maddie was tested and sure enough the therapist concluded what I already know…Maddie is turning 36 months old and is at approximately a 18 to 24 months developmentally …yeah I know…I know…I am not so wrapped up into Maddie that I do not see her true milestones, skills and tasks in her tool belt…I told her therapist that I am officially not attending the IEP…not doing it…I am not sitting at a table and listening to something I can read for myself…alone…with wine, tissue, and on my own controlled terms…I know at this meeting they will tell me what they will provide and we will set goals…I know what they will provide it will be on the document that I have to sign to get services…this is a long process and I feel like I did in the beginning…no control…community child….with no end in sight…I know what to do when she is not getting what she needs…I speak up…not difficult…and if they do not take care of it…I will…Chad, Max and I will pick it up and teach…we will carry her and we will push her…we will hold her…it is our job to…and goals…Maddie’s goals are what she succeeds to master in this year…I am not sure were my anger, frustration, uneasiness are coming from…for goodness sakes it is pre school…with a side of therapy…two times a week…not her going away for a day or even a night…just 2 hours 2 times a week…but this feels big…this feels scary…and the sad thing is Maddie does not even know what is coming…we talk about it…but she does not know Mommy will not stay…so now I put Maddie into this world…where people refer to her as the “r” word or the mentally disable…I will hear things like it is my “calling” to work with people like Maddie…I hate that…I feel it is condescending to tell a anyone that it was there calling to work with my child…really do not do us any favors…because you get far more from just being in the presence of my Maddie then she will ever get from you…I know I will get used to Maddie being independent from me…and I know that she will love it…and I know she needs it…but this truly is easier said then done…I want to ride both sides of this fence…I want to receive therapy and assistance with Maddie…but I do not want a community child…I want help to raise her -on my terms…not on a standardized tests and money terms…I want Maddie to receive all the extra OT, PT, SP, reading one on one or in a group…but I want her included in a regular classroom and not segregated out….and I want her to play sports, participate in plays and walk in the graduation line because she earns it…not because she was born with extra and it looks good for them as a school….I want Maddie to live life to her fullest potential…I want her to be described as Maddox, Maddie or Mads…the nicest chica I know…exhale…
Monday, April 16, 2012
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Deep deep breath!I could write this myself, it is so much what I feel too, ( except we do virUtually all Owey's therapy because there is nothing in town here) Owen could start preschool next week but I am not ready to let him go, there is already a spot for him, I just have to say yes and I just can't do it yet.
ReplyDeleteOwen communicates a lot during the day at home but when he is around others that gets reduced to smiles and blown kisses, He knows others don't understand sign, I guess I am worried about him shutting down - being isolated in his own world.... All this reminds me I have to get onto finding out if he qualifies for a personell aid during the day.......
This was an excellent post. You have put to words some of my biggest issues I wrestle with that I did not know how to put to words. Like "community child..." yes, that is exactly what I cannot stand and feel. Kristen is mine, and I do not need those that "are called to help her" pitying her and helping her because somehow it may make them feel fulfilled. I too want Kristen to participate because she earns it too. I so get what you are talking about here. I think that is the core of what bothers me about the "team" at the IEP. She is just another special needs kids to sign off on...I feel it is a rare day where they see Kristen for the individual she really is. I also think that is just another reason why I do so much myself with her...or maybe my control issues too. Whatever the case, maybe we could someday get together with our children's IEPs and two bottles of wine, one for you and one for me, and read them on our own terms together...:) It would be great therapy for us, huh? Great post again.
ReplyDeleteCould understand and relate to every single word you wrote here Kim. I do not like my son feeling like a "community" child either. I like to think I have enough sense to help guide and teach Russell that I don't need a team of people telling me how I should do it! I respect other opinions and advice, but in the end, I want to do the job. I want to raise my son, my way.
ReplyDeleteI never thought of a community child before, but you are so right! So you tell them what extras you think Maddie needs. She can be in a regular classroom, and she can play sports if she wants to. I guess we just have to be careful about that fine line, and man, that can be hard sometimes!
ReplyDeleteThe 'community' child hit home with me too. Its hard to always feel like there are others that think they know whats best for our kids. Maddie will do great at preschool! I think the transition to school is harder for parents and kids when they've always been together. I'm so excited for Claire to go to preschool, but not for the IEP process!
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