Memory Lane

My baby graduates June 8th.  She is going to walk across the stage in her cap & gown.  I’m going to cry like a baby.  Yes, I am very happy she has made it this far.  I guess it’s just the change has me thrown a little.

There are good things happening for her after she graduates.  We found a good program for her and I found out that her sister, who is already her respite provider, can be her 1 on 1 aide for the new program because of Taylor’s health issues.  That’s going to be so great.

I won’t have to worry about what is going on with her during the day.  That’s always been the hardest part for me…Taylor transitioning from one school to another.  When your child is non-verbal you have to learn to trust those teachers that you leave her with everyday.

I’ve only ever had one bad experience with a school and that was when Taylor was 10-11 years old.  Her seizures had started to get really bad.  After music class one day, Taylor just stopped walking.  They said she didn’t cry, but just wouldn’t walk.  No one called me at work.  They sent Taylor home on the bus like normal.  My oldest was watching Taylor then and she said something was wrong with Taylor’s leg.  By the time I got home at 10pm, Taylor was crying and her foot was hugely swollen. 

I rushed her to the ER and she had a broken leg!  When I went to the school the next day to figure out what happened, they said…”well, we had Taylor being watched by an older (12 year old) DS child when it was music time and they said the girl told them that Taylor fell while doing the “Hokey Pokey”.

Seriously?  You left my constantly seizing child in the care of another special needs child and no one saw what happened to her?  Not to mention that earlier in the school year, I would go pick Taylor up from school and find her outside at the top of the slide…by herself!!! Hello?  She has bad seizures….remember?

Okay, sorry.  I made myself mad all over again just relaying that story.  Anyway, fortunately, in all of Taylor’s school years, that was they only bad teachers so I count myself lucky.

Sorry for the vent.  That kind of came out of left field.

A Day Out Bowling

 

 

Saturday, I went bowling with my daughters and grandkids.  Taylor had spent the night with her sister and we thought it would be fun to do something together.  Taylor loves to bowl.  That was her first community trip when she was 3 years old and in the public school.

Taking the special kids out into the community has always been a big part of Taylor’s learning.  It teaches the kids how to act and it gives the community the chance to know these kids are here.  I’m sorry if that sounds a little off, I just don’t know how to word it any different.

I’ve always believed that taking the special kids bowling, to the store, to McDonalds, and the like gives people who may not have anyone special in their family or who may never come into contact with someone like Taylor the chance to see them as people/kids.

Now I’ll admit that Taylor is pretty popular in our town.  She knows more people in Lebanon than I do.  People always comment how much her smile lifts them up and how they love how happy she is.  I like that.

Years ago, when Taylor was 6 and we were living in Atlanta, one of the kids in Taylor’s class never went anywhere unless with the class.  Her mother said she just couldn’t deal with how people stared at her child.  I’ll admit that that was something I had to get used to and depending on the situation, it can still get to me.

However, I’m not going to deprive Taylor the joy of socializing in the community because some adult can’t deal.  I sat and talked with this mother.  I invited her and her daughter to lunch and walk around the mall several times a month and eventually she learned to just enjoy her daughter’s joy at being out.

I didn’t do anything but understand and be there for her and I’m sure when the time came, she was there for another mother.  Okay, this blog started out as just a “look, we went bowling blog” and ended up in a completely different place.

I guess that can be a bonus of blogging…being able to get things off your mind you didn’t know where there.

Sharing an Awesome Post

I read this here and just wanted to share it with others. 

 

Top 20 Reasons Moms of Kids With Special Needs ROCK

 

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.

2. Because we’ve discovered patience we never knew we had.

3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.

4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.

5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.

 
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.

 
8. Because we are strong. Man, are we strong. Who knew we could be this strong?

9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.

10. Because we work overtime every single day.

11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.

12. Because we are more selfless than other moms. Our kids need us more.

13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.

14. Because we inspire one another in this crazy blogosphere every single day.

15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.

16. Because we never stop pushing for our kids.

17. Because we never stop hoping for them, either.

 
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.

19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."

20. Because, well,YOU tell me…

Stubborn Girl

I’m experimenting with new fonts so if you have trouble reading this, please just let me know.  I’m crazy that way…I love to constantly change fonts but sometimes it can annoy those who read my little blog.

Have I mentioned that Taylor is stubborn?  About 6 months ago, Taylor got on this kick of not wanting to get on the school bus to come home.  I would get a call from the school and have to drive to get her.

I’m thinking, lord if they didn’t know better, her teachers would swear Taylor was abused and didn’t want to come home.  Honestly, I have no idea what started that little trend.  But then, it’s Taylor, so no way to find out.

It’s been a good 2 months since we really had any more issues with her not getting on the bus so I thought we’d gotten through that little development.

Not so fast.  Yesterday, I’m dealing with a customer when my cell phone rings.  I can’t answer it so I just finish with the customer and wait for the voicemail.  Sitting beside me is The Bossman, dealing with another customer and his cell phone rings.  Of course, he can’t answer it either. (Note": the caller ID just says unknown so no way to know it’s the school.)

By the time I can listen to my voicemail, it’s the school saying Taylor is still there because she refused to get on the bus.  Now if she weren’t over 6 feet tall, they could have maneuvered her on the bus. *laughs*

My daughter Brandy sends me an SMS message on my computer saying the school had called her…yep, they went right down the list.  So Brandy went and got her.  Well actually, Taylor told Brandy no when she tried to get her from school.  However, Taylor the flirt, said yes to Brandy’s boyfriend when he said “come on Taylor, lets go home”. 

Damn brat (said with love).  This is one of those times when I would love to know what Taylor’s reasoning is for not coming home.  I do have my suspicions…that’s how much Taylor loves school.  So that just makes her graduation that much more bittersweet.

I decided to use a picture of Taylor when she was happy to get on the bus.

*YAWNS*

 

Tired.  Exhausted.  Sleepy.  No matter what word you can think of to describe lack of sleep…that’s me.  Last night had to go down as the most exhausting night in my grandkids babysitting history.

I got more sleep when they were infants.  At least then, you could fall asleep while the babies laid on you.  Last night it was “no kid” sleeping night.

Let’s see.  Gavin went to sleep really well.  So did Ally…at least i thought so.  It was Taylor that kept getting up making dozens of trips to the bathroom.  Okay, so her tummy might have been upset.  When I went in her room to check on her,she kept pointing to Ally in the port-a-crib.  I thought she was just showing me that she was there. 

Anyway, after an hour of her pointing, I leaned down to check on Ally and realized she was sleeping in throw up.  Yuck!  I picked her up, washed her off and laid her in bed with Taylor.  I changed the sheets and put her back to bed.  I thought, okay, that’s the end of that.  Nope, from then on, she would cry about every 20 – 30 minutes. She would go back to sleep when I rubbed her back.

I had moved Gavin from the couch to the futon in Taylor’s room which was fine until he woke up scared.  I had already made my bed on the couch so I could deal with them without waking The Bossman every time i had to get out of bed.

Gavin asked me to come lay with him on the futon.  As soon as i did, Ally started to cry and then Taylor would sit up.  By 4am, even Gavin had had enough, so I made him a bed on the floor next to the couch and at 5am, i finally dozed off on the couch.  Of course, Taylor The All-Nighter, decided to turn her TV on at 7:30 this morning…quite loud.

Gavin was really good.  He asked if he could have a pop tart, and he quietly ate it watching SpongeBob while I dozed on the couch for about another hour.

At 8:30, I finally gave it up, got Ally out of bed, laid her on the pallet on the floor where she still is.  Poor baby doesn’t feel good.  Taylor is happy she has her room back to herself and Gavin goes from the computer to the TV.  He’s being a really big boy this morning and I’ve enjoyed his company.

The nights of Nanas. *laughs*

Even though it was a rough night, the kids have been really great and I've had a lot of fun with them.    They are growing up so fast.  Ally has the vocabulary of a 5 year old (she’s 2 1/2) and Gavin is just smart.  The Bossman and I saw him surfing Amazon looking at train stuff.  How that boy got to Amazon.com, I have no clue.  The Bossman was amazed as well.

I’m tired again just reliving last night.  At least The Bossman is still firmly ensconced in his bed sleeping peacefully.  *smiles*