Saturday, June 29, 2013

My Message To The Great Wolf Lodge

I have a special needs child who is 49" tall and weighs 38 lbs. She is 5 years old.   She wanted to ride on the slides that are at Whooping Hollow.  In the name of "safety" your staff would not allow her to go down the slides because she is too tall although adults much taller than her are allowed to go down the slides because it is "safer" for their children to go down with an adult.  If this rule exists for safety as your staff claims then you should really examine the rule because putting a child who does not weigh enough and cannot follow directions well enough to go on the other slides is not the safer option.  As a "family" waterpark and one who raves about their compliance with ADA standards I would think you would make some attempt at inclusion of children who would like to enjoy a waterside just like other typically developing children do.  We are scheduled to stay again at the end of July but I'm not so sure now.  The indoor waterpark was a nice thing because getting too hot increases my daughter's seizures, but I was sorely disappointed that we were inside yet she wasn't allowed to ride the 2 slides that she was capable of.  We were offered a free Magic Quest Wand or a free dinner as a way to make her trip "special" and to I suppose appease an upset mother.  I refused both.  I don't want free things.  I want my daughter to be able to enjoy the park she had looked forward to for a very long time.  Shame on you for your treatment of patrons with special needs!

Thursday, June 27, 2013

5 and 6

And 3 million years later I finally post again!  Some huge life changes have occurred since my last post.  Since graduating from nursing school almost 10 years ago I have worked in critical care and the 2 years I worked for a Dr and not the hospital still involved critical care.  I knew about 1/2 way through nursing school that critical care was my love and I never imagined doing anything else.  I thought critical care was my purpose.  And it was...for that season of my life.  After a long chain of events at the hospital where I had worked for so long it became evident to me that I could no longer work there.  There were some fundamental differences in the way I think people should be cared for and the way the hospital thinks patients and staff should be cared for and I could not stand by any longer and pretend to be ok with the direction in which things were moving.  So I left.  It was hard and it was sad because my coworkers were like family but I knew that the bonds we had formed would not be broken by a job change.  I was scared to start something new but I also knew that the same God who had laid it on my heart to leave would continue his plan and take care of me.  I took a job doing home health and I couldn't be happier.  I go to these patient's homes where I care for them and listen to them and I swear that they minister more to my heart than I ever could to theirs.  Most of my patients are in their 70's-90's and they are the most awesome generation.  They are not of the entitled generation.  I want to adopt each and every one of them.  I am so at peace in my new job- a peace I had forgotten because I had no idea how unhappy I was at the previous job until I became happy again.  I took a decent size pay cut but God knows our needs and has made up the difference.  It was a huge step to trust that we could afford an $8+/hr cut but the trust and obedience has been honored.  Kenneth is working a second job on his days off from the firehouse which has actually made him happier as well.  Not being cooped up with the kids everyday has provided him a whole new freedom.  An amazing lady comes to our house and cares for the kids and loves them like they are her own.  God knew I needed her too!  Enough about all of that.  Now on to the kids.  Carly continues to grow up and I fear the hormones are kicking in.  I'm afraid...very afraid.  She's moody and generally just acting more and more like a teenager.  On a good note though she is developing some understanding of responsibility and chores and for that I am thankful.  She's understanding the whole you scratch my back I'll scratch yours thing when it comes to her doing chores equaling me having more time to do things with her.  Don't get me wrong, she is still pretty much a slob but I see progress.  Gabe is doing well too minus the nice GI virus that left him with diarrhea for 3-4 weeks.  No lie.  It was not fun for any of us, and yes, a virus apparently can last that long.  Just ask Dr Goff who had multiple patients with it.  He is talking more and more (especially when his sisters are gone) and has a fascination with tractors and (big surprise) fire trucks.  And then there's Anna.  She got the dreaded virus too and it was for sure worse on her than anyone else.  Just imagine the horror though- 2 kids in diapers each with diarrhea each for 3-4 weeks.  If we never repeated that scenario again I would totally be ok with it but Huggies stock might go down.  Then there was the weight loss that occurred with it- she's back down to 38 lbs.  she was up to 41 before the virus.  Grrrr- 6 months or more to gain it and 1 month to lose it.  She's certainly opposite of me.  She also had another pyloric dilation which appears to be helping her reflux so we will hopefully be backing off on her meds a little sometime soon.  She was able to button a button last night.  I don't think she knew what a big deal it was but I certainly did.  She is still struggling with toilet training and I'm about to the point of just accepting it may never come.  I hate to give up because deep down I know she will do it but it stresses me out and when it comes right down to it, she will do it when she is willing and able and not a second before.  I am thankful that Medicaid now covers her Pull Ups because that makes the acceptance a tiny bit easier.  Although she still only recognizes 2 or 3 letters I am finding that she knows how to say the names of more letters so that is great progress.  Numbers 5 and 6 though, the stupid numbers 5 and 6.  She can't remember it.  It's always 1,2,3,4,7.  Oh we'll, that's more numbers than she could say at this time last year so any forward movement is good.  Right?  I get so frustrated though because anytime I try to work with her (even when I disguise that it's work) she just shuts down and refuses.  I know she's frustrated too and I don't know how to help her.  Anyone ??  She will probably be getting new SMOs (Suresteps) soon too and I know that will be another battle, but a battle that will be easier win now than 10 years from now.  Here are a few recent pictures just so you can see they are still adorable- that will never change.

PS- I posted entirely from the phone, pictures and all so I hope it formats itself correctly.