Sharing grace...

Easier said then done I think...as my quest goes on to learn how to bend with Maddie...I have to learn how do this gracefully...I am not graceful...anyone that knows me would never put me and grace together and then to put sharing into the mix well that is when all hell breaks loose...when I learned Maddie's diagnosis I hated all the doctors appointments that went with it...all the planning and forethought...then I had Maddie and when I reflected back I was so thankful for all the doctors visits and trips to Denver...it prepared me for life with Maddie...no longer was I scared of hospitals and most importantly I knew how to talk with medical workers...from doctors, to nurses, to office people...i knew how to navigate insurance companies and not care when I called bullshit...but I learned never to let something go...and when dealing with Maddie school communication has been a struggle on my part...I am not sure if I am to good at it...I thought I made it very clear at Maddie's IEP that I needed weekly email communication...I really did not think it was much of a big deal...in the past month I have been asking for more...more updates and real information on how Maddie is doing...not if she is cute or if they like her...how she is really doing...I know that my child is stubborn, independent, loose interest quickly and talks a lot....and I did I mention that she thinks she should be the teacher...well she does with her hand on her hip and telling each child what she thinks they need to do...and I get that this can be really frustrating for a teacher that is trying to teach not just my child...so I asked and asked and got bits and pieces of information..land WHAM a copy of her IEP...and all the stuff I thought I knew she was doing she was...and now she is decrease in behavior skills at school...why would they wait till this to talk with us...I have been asking and the communication I get is that she really enjoyed a activity or that she is loving to dance...it's always been positive...I do not need positive...I need real...I do not like only talking about behavior issues a couple times a year...I think we need to whip it in the butt now...not when it gets to out of hand...so I emailed her teacher and asked for more...again...asked for a behavior plan...asked for reinforcements...asked for them to make sure they are challenging her enough and making realistic expectations for her...I am new to this and I even get the obvious worksheets are NEVER a good thing...real life is what teaches...play...other children...other children with good behavior helping show my girl the way...so this is it...this is my introduction to school and educating Maddie...this preschool is where I will learn grace, I will learn to advocate with out being mean...and simply put I will learn when I need to speak up...how to speak up...and when to shut up...now if I can just keep repeating "help me understand with grace and patience" please!

I email because then it is documented...I want everything I ask for to be on record...for her IEP meetings...

typical Maddie...

looking...

next month we are going to the Down syndrome clinic in Denver...we are seeing many doctors and having a sleep study done...but I am going back and forth if we should...it seemed like a good idea...it seemed like the right thing to do...I want to make sure Maddie is good...I want to make sure she is hearing properly...I want to see where she is with speech and motor development...if she needs orthoidics...and if she has sleep apnea...in that couple of days she will see great doctors and therapists...that work with Down syndrome daily...but I do not want to search for something that is not wrong...but then I do not want to stand back and do nothing because I am scared of another diagnosis...I get so jittery on if we should or not...Chad is indifferent...I do not want to be that mom...the mom that has to go to doctors and be hyper vigilant about my child...I would not do this for Max because he is fine...with Maddie she gets a cold I call the doctor I ask him about everything vitamins, sleep, eating...with Max he gets a cold I tell him he is fine and to cover his mouth and wash his hands...I get that the start with Maddie was full of suprises and unknowns...and because of that I am head shy when it comes to more or different...we are going to Children's Hospital and we were at Prespertarian/St. Luke's Hospital for all her other surgeries...so change is scary and what ifs...when I made the appointments my reasoning I thought was sound...Maddie snores when she sleeps and is very tired...lets try to rule out sleep apnea considering she is on thyroid medications and she should have a tad more energy...her feet...they curve in and down...I put her in good solid shoes daily not cute ones like I would like so it helps keep her balance and her feet from falling or drooping...she does good with them...but I want to know if it truly is ok or if we need to do more...her hearing was good a couple of years ago...but I know things change with hearing and I want to rule out problems for speech...with all our speech therapists I would like to get them all to have a good starting point...I am not sure why I get scared...why I try to talk myself out of it....remembering it is about Maddie and not about my feelings is at times difficult...so we will spend some of our spring break in the hospital just like last year but hopefully a better outcome and not so dramatic...I want this to be a positive reassuring visit...I do not want to get my hopes up to high...it amazes me that people that work with families still refer to Down syndrome in slang terms...but then again it could be me being to sensitive...wow am i wishy washy

Overbearing...

I skirt around things...I write an email...save it in draft...reread it...think about it...I ask myself is it mean...to aggressive...am I being to pushy...I get tired of second guessing myself...I get tired of wondering if I am asking to much...why is it I just cannot say or ask...what the hell is going on with Maddie...what did she do at school today...did she have a good day or a bad day...did everyone be nice to her...did she get her feelings hurt...I have a child that cannot tell me...I have a child that comes home with a stamp on her hand and I do not know why...I have people that teach her all day...and I know very little about them...I know very little about what they do with my daughter...this is when I think I need to go and sit and watch...I would be totally content going to school with Maddie everyday to see how her day went...I think that's why I love tumbling I get to watch what she does...who she plays with...and if she gets hurt...because then I get to talk to her about it and we can have a nice conversation...even though she is not clear in words she is clear in her intent of the jibberish...I get what she is saying...her new therapists give me a full couple of pages of detailed accounts of what she did with Maddie...how Maddie reacted or acted...she puts feelings into it...it is like I am there and Maddie and I can recall her time...it is in a weird way "normal"...I want to know about Maddie day...I want to know if someone hugged her...I want to know what she had for snack...simple enough right! But it is not simple...not in the slightest...it is painful to know I know nothing...this is something I never thought of when Maddie was a baby...it was not on my worry list...not being able to communicate with her was just not there...I thought by 3 almost 4 years old we would be able to have a conversation...but not today...