Wednesday, December 18, 2013

Another School Meeting and a big milestone

Another busy day:)

We had another IEP meeting for all three little ones....things have taken so long to get into place for them.  I'm frustrated with the whole process and shared my frustration today (why are you shocked?)  But I do feel mostly good about the team in place.  Sam was scheduled for an evaluation for speech with the Speech Therapist with the "wonderful" people skills (said with much sarcasm) but I asked for another evaluator.  I look at my situation like this.....I absolutely refuse to deal with someone who is grumpy up in my house.....Now they can be grumpy till the cows come home somewhere else but I don't have to have it in MY home!  And I won't have it in my home.  We deal with so many people in and out of our home everyday that I have totally decided I won't have someone, whether it is someone from the nursing agency or elsewhere that doesn't treat me with respect or is grumpy, in my home!   I'm not into 'negative spirits" or anything like that...LOL  I don't' give someone like that that much power BUT I'm not going to deal with it either!

One thing I laughed about today was a statement from one of the school board personnel, she said "Mrs Clanton loves whoever loves her kids!"  And that is true, if you love my little ones (or big ones) I'll probably love you too:)  

One thing I, along  with MOST special needs moms would want EVERY single teacher, therapist, evaluator, "professional" , medical personnel etc to know is ....WE LIVE THIS LIFE!    We know our kids....You, Mr/Mrs Professional went to school, work with kids....BUT we live it!   Today someone was sharing some goals that I thought were just a bit goofy for our situation and I reminded them "this is NOT my first rodeo"  I've been LIVING with a blind child for almost 10 years now.  I'm a little beyond the basics.....believe me I could teach the class on how to live and deal with a blind child.  There was a time when I didn't know WHAT to do but thankfully I had the Division of Blind Services and their children's program, Lighthouse for the Blind   to instruct me as a mom. With Blind Services and Lighthouse, MANY of the people I deal/dealt with have vision issues themselves.  Some are completely blind so Blind services and Lighthouse  come at things in a WHOLE different way!   It's so much better....100 times better because I'm learning from people who have lived it and have a degree too but they know it from having lived with that particular disability for years.  And the staff that are not visually impaired tend to be much more easy to relate to because of the staff around them.  They learn by DOING not just in a classroom.    Plus over a decade, you pick up a few things on your own LOL!   That attitude just kills me! 

All I can say after the meeting is I'm glad I know a few people that have worked with and are still working with my little ones who are in it to see change and don't really give a rat's behind about all the rhetoric and "correct wording".  They are ALL about the kid and how to work with that kid, they don't try to work with Sarah like they work with Sam or like they worked with another child.....they look at the child and focus on the child in front of them.  And they listen to my input.  I don't know but I do live with the child.   I found myself rolling my eyes a few times today to say the least....  I forget what was said in all the conversation but something was said about Sarah and how she pushes on her eye, waves her hands in front of her eye and even sometimes softly hits her head near the eye.  These are all "blindisms" and most blind kids do some of those, even if the child is perfectly fine mentally.  Anyhow someone remarked about Sarah doing it (and she was right then cause she was a bit tired of everyone) and I remarked "You should have seen her a year and a half ago when we got her home"  Heck she has come so very far WITHOUT any help from the school board at all, so it cracks me up when they begin talking all concerned....I want to say "well where the heck were you all, all those months ago??"   We are dealing with and working with Sarah and boy is she responding in an amazing way!   So yeah, I'm still dealing with a bit of an attitude you think?

So after we finished that fun experience I took the kids to eat at our favorite restaurant  "Sunrise"  then on to the DMW...the Division of Motor Vehicles so Steve could get his driver's license rather than the permit he had......  He took the driving test last week in Driver's Ed but today was the first day we could go and get the license....  Then down the street to our insurance agent Baldy Boyd  (isn't' that a funny name) to find out how bad it will's not too bad to add him to our insurance.  In Florida we only have to add a child after they get the full license not just the permit.  Steve is so proud that he has "safe driver" which cracks me up since he has only been driving a few months!  But he has the real deal now and can drive by himself (not going to happen yet!)   But he is really a good driver.  We've been pleased with how he handles himself and the car.   It's just scary for us.  We'd like him to have more experience driving before he takes off on his own.  I actually would like him to have about 20 years of driving experience before he takes off on his own LOL 

I don't want to be a negative person or someone who always expects the worse.  I battle that daily...sometimes hourly.... because I've had the worse happen.... having a very traumatic childhood,  Jon's mom was killed in a car accident right after we were married....having lost the twins, having a child born with so many special needs, then the accident..... I tend to expect the WORSE instead of thinking things will be ok.   So it scares the crap out of me to have a son who is driving.  I just pray that he stays safe.  I really don't worry so much about HIS driving but I worry about the other drivers not driving good and him just  not having the skills to avoid an accident.  So  does anyone have a nice underground bunker for sale???  LOL

I don't' know if you can tell but Steve has lost 15 pounds (and that was more than a week ago)  he has changed his diet and is jogging every day!  He is getting back to his triathlon  shape if not better! He actually runs much more than he did when he was in training.  Back then he didn't run every day like now and most days he uses weights.  Then he exercises for about 30 minutes and does sit ups etc.....  He almost never drinks soda now!  That is a miracle! 

Thanks for praying for my dear friend's grand daughter.  Sabrina did take more by mouth today!  I've not got a big update, we were both running today but hope to hear soon.  Please keep praying for this beautiful little girl! 

Selah did not want to stand in the stander today.  She actually got a little teary.  Most days she stands up for about an hour.  It helps her bone mass and growth.  Hoping it was just an off day for her and that nothing is going on.  Otherwise she seems fine.  Thank you for all your prayers for Selah! 

1 comment:

  1. Yeah for progress with school, even if it is slow! Most teachers and staff respect a parent that is passionate about their children, even if they have different ideas!
    Congratulations on Steve's license! Prayers for the car and the driver always! Our daughter was the passenger in a car accident with a friend driving and that was enough for me to want to keep her home forever! No answers...
    BTW, LOVE the Christmas photo! (Sorry it's been a while since I've stopped by :)