Monday, September 8, 2014

What Maddie is up to...

Maddie began kindergarden last week...not sure how this happened so fast...in the midst of raising Maddie it felt like time slowed down...her milestones came with long periods between celebrations...when she was a baby and toddler I literally thought Maddie would never get to where she is today...but she/we made it...it was anticlimactic at best...so in turn this week I pondered about why I was numb...this is what I think happened...Maddie simply put can do anything...the difference is that she gets there slower...she gets there and it looks different then what I have experienced...but it is not less and it is not more...it is just perfect for Maddie...I have a motto that raising Maddie is a marathon...not a race...I still compare Maddie; I probably always will...it's just my nature...sometimes it makes me feel insecure...sometimes it makes me sad...but what kills me, eats at me is that where she was last year did not want her...could not handle her...they acted as if it was a chore to have Maddie in their classroom...the sometimes email after I would repeatedly ask would say that Maddie was naughty, not listening, not on task...after her exit IEP they mentioned they stopped all sign language and pecs with Maddie...this was why they were having issues...Maddie is still pretty non verbal...she has words and we understand her and her therapy base program understands her...but if you do not take the time with Maddie she will not perform...she will not want to understand...and then she will be off on her own...getting into the sink or trying to escape...but this year...Maddie is busy!! And she is in the best of the best of programs in our public school system where the teachers want her and care for her and communicates with me and Chad...and is just present in Maddie's day to day....she then goes to her after school therapy program that is stellar offering speech, OT, PT, feeding, community life skills...daily! Yes I said daily minute by minute purposeful therapy...she goes swimming, climbing, jumping...holy cow...then on Fridays she has a dance/tumbling class that she absolutely loves with her friends from school...amazing...the lift in spirits in our whole home...because our girl is thriving and excelling...

Now if we can get her health to understand that we do not have time for more!! We went to the ophthalmologist a month ago and the pressure in her brain has not improved nor has her eye sight...so back to Denver we go next week to see the neurologist...best case we wait and see...worse case  is unknown...I say unknown because this whole thing has been bizarre and scary...we also will see her  pulmonary  and  GI doctors to check in on things...again best case is we will see them in 6 mo...worst case is hearing something that is not expected....more...more medications, more tests, more doctors, more visits...we need a break from all this and worry about what we will be for Halloween!